Com(mentary)Aut(ism)World

Moved the blog.

2010-05-30T21:36:00.002-06:00

No icon this time, just a note to let you all know that the blog has moved to a new home: http://jannalouise.thehoskincentre.com/blogs/asd/

Everything's been imported, including comments. I'm deciding what to do with the categories and tags, and I need to fill in the links and stuff in the sidebar. I'm probably going to be playing with the theme for a while, too. But this is its new home, and where it will be from now on. There is an RSS link, though - enjoy!

2010-04-05T18:51:00.005-06:00

There are currently at least two issues being argued over. The problem is, I think, that we are getting them mixed up in our minds because they involve some of the same players. Note: This is my take on the situation, and may not be entirely accurate. I'm not going to be able to please everyone. If you have corrections to this account of events, please do post them to the comments or e-mail me so we can talk about it. I can't promise that I'll edit the post, though, because I want to keep it about my interpretation of events. I might make a comment to it with any new information that seems important.

Issue One: ASAN & Accountability

To my mind, this is the issue that really needs to be addressed publicly, and soon.

Information is currently one-sided, because ASAN hasn't made any formal statements. (So far as I can figure out, ASAN isn't making any statements at all except to shut down discussion of the issue on its own lists.)

What is the issue, specifically?

ASAN has apparently made some claims about Michelle Dawson and her work that are not true. So far as I can tell, ASAN has failed to respond to her accusations in any reasonable fashion (or at all, aside from an apology that didn't seem to address all of the concerns Michelle had). (I note here that, as I said above, this is all one-sided information, because ASAN hasn't made any public statements about the situation, which occurred nearly a year ago now. As a result, the only information that is accessible to me is Michelle's version of events, and while Michelle certainly considers herself to be error-free, I know for a fact that she often misinterprets things people say.)
ASAN does not seem to have a policy in place regarding the promotion of ASAN by its leaders. Such a policy should include requirements for disclosure regarding the individual's role within ASAN, if this is not immediately apparent in another way.

Since ASAN is a lobby group that claims to represent autistic interests, it would be in its best interests to deal with these two points, both internally and publicly. Not doing so will continue to hurt its standing in the minds of everyone, particularly the autistic individuals it claims to represent.

Issue Two: Michelle Dawson herself

There has also been a lot of buzz about Michelle Dawson. For the most part, this buzz has been critical of Michelle's black and white style of thinking - her difficulty with seeing others' points of view - and her responses to those who either disagree with her outright or who attempt to challenge her to think about things in a new way.

I've stated my case in several places now. I stand by what I have said, and I won't be a regular reader of TMoB anymore, nor a poster there. That is my choice. I have not tried to take anyone with me, and I won't. Michelle's work is incredibly important, and I hope she continues with it, regardless.

This post explains my involvement and views perfectly.

So now what do we do?

DJ has written a very good post about what needs to happen. That, coupled with the post by almandite (linked above) should inform us as we go forward.

I hope they do.

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A couple of things

2010-04-02T18:24:00.005-06:00

First, the second issue of AutistiConnections should be out on Sunday. It was supposed to come out yesterday, but my life hasn't been conducive to putting out a magazine. And then today I realized that we forgot to renew the domain, so we have to wait on that, too. When the site is back up, you'll be able to check it out at http://autisticonnections.org. In the meantime, if you want to submit something about independence at the last minute, please do so. You can e-mail me articles, stories, poems, or artwork at janna@thehoskincentre.com. Please include a short paragraph about yourself, and be sure to let me know what name you would like to be published under.

Second, this blog is eventually going to go the way of the dodo. I'll be importing everything into a blog I have over at my primary web domain and will make a final post here with a link to the new location once it's been done. There are a few other blogs up and running over there already; feel free to check them out at http://jannalouise.thehoskincentre.com/blogs. I'll leave everything here, but any new posts will go up over at the new location.

I think that's it for now. Thanks for reading. :)

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I'm getting married!

2010-01-06T21:21:00.002-07:00

I suddenly realized I should inform my few readers of the news: as of Christmas morning, I am engaged!

The details will all be posted over at our wedding blog, so if you're interested that's where you'll want to go. I may well post here about the trials and tribulations of attempting to plan a wedding with unmedicated ADHD, but for the actual wedding information, you'll want the wedding blog.

Oh, speaking of medication, I have concluded that I do, indeed, need meds in my life. I've asked my doctor, but she only prescribes Strattera, and we all know how horrible that is, so I'm waiting for a referral to a psychiatrist. I hope it goes through soon...!

A quick word about my writing.

2009-12-15T17:54:00.004-07:00

I am a writer. As part of my commitment to writing, I participate in Script Frenzy and NaNoWriMo each year.

For NaNoWriMo, I write Young Adult novels about teens with disabilities. This year, I wrote the third book in a series.

The Möbius Strip is about youth with disabilities who attend an alternative school in Calgary, Alberta.

Tumbling is about Talia, a 14yo autistic girl with tardive dyskinesia (a result of the antipsychotics her mother had her take for several years). She wants to be a competitive gymnast. She also has to testify in the trial of the man who sexually abused her. Tumbling was the novel I wrote for NaNoWriMo in 2008.

Relevé takes place two years after Tumbling. Shortly after her 16th birthday, Rosemarie's boyfriend dumps her. Then she fails her audition for the ballet corps she has wanted to be a part of for years. After nearly destroying her friendship with Talia, Rosemarie re-evaluates her life and dreams, finding new strength and self-understanding. Relevé is a complete rewrite of the novel I wrote for NaNoWriMo in 2006.

Pointillism follows Relevé. Tim is 17 and has unmedicated ADHD. He desperately wants to attend the Alberta College of Art & Design (ACAD) next year, but is having a horrible time getting his portfolio and application finished. He is Rosemarie's former boyfriend, and still has feelings for her. Pointillism is the novel I wrote for NaNoWriMo in 2009.

If you are interested in reading more about these characters, check out my blog, Sylvie's Song. Sylvie is a recurring character in the YA books. In Sylvie's Song, she's five years old. Sylvie is autistic and uses pictures for her primary form of communication.

As with much of my writing, this is meant to promote awareness of disabilities and give individuals without disabilities an idea of what life is like for those who do have disabilities.

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A few thoughts and a story

2009-12-15T09:24:00.008-07:00

I think I've written about this sort of thing before, and I doubt this is going to bring out a lot of new information. But I want to share something I wrote this morning as a comment on another blog entry, and I want to share the story of an encounter I had this fall. I'm hoping that this will help add to the discussion - or maybe begin the discussion - about diagnosis, treatment, society's response to disability, and myriad other topics I may or may not end up commenting on in this post. (In case you weren't aware, I tend not to plan out my blog entries ahead of time. That's why a lot of them get rather rambly.)

As you ought to know by now, I have an ADHD diagnosis. I was 28 when I obtained my diagnosis, and it was largely a relief to know what had been causing me so many problems all my life. I didn't tell people about my diagnosis at first. I told my family - parents and siblings only - and a few close friends, but that was all. I didn't want to have to deal with the stigma the label carries, and I wanted to see if other people noticed a change in my behaviour when I started taking medication.

Over time, I started talking about my ADHD whenever it seemed appropriate. I decided it didn't matter who knew about it or what they thought; I approach my life on my own terms, and I'm not interested in trying to achieve others' ideas of "success" - only my own. (Whether or not I'm able to be successful on my own terms is a whole other story, but that's not the point here.)

In October of this year, I met a rather... abrasive individual. This person was part of a group at the time. I met with this group and mentioned my ADHD; the response I got from this individual was the beginning of a tirade against Big Pharma, which apparently invented ADHD in order to sell more medication. When I pointed out the degree to which my ADHD affects my life, and explained the difficulties it causes me, I was given the stock response "everyone has that sometimes."

The thing is, yes, everyone does "have that sometimes." But not all the time, and certainly not to the degree I have it.

But wait, it gets better!

Later on that evening, this person made a connection between me and autism, and proceeded to state that vaccines cause autism. "No, they don't," said I, and returned to a different conversation going on with others in the group. But this person wouldn't drop the subject, and at one point I said that quacks and crazies believe that stuff. Eventually the subject was dropped, thank goodness.

Except it wasn't; I received several private messages on a web site from this person, all providing links to sites like Generation Rescue. These messages continued even after I said I didn't want to talk about it (primarily because it was obvious that there would be no fruitful discussion). In addition to this harassment, several off-topic posts were made on the forums of this web site, and when the posts were suppressed and the person reprimanded, this individual retaliated by arguing and calling the head moderator names. The person was summarily banned from the site, but came back a couple of weeks later (adding a 2 to the end of the original user name) and made one post, which used many expletives and called the head moderator even more names. Again, the individual was banned from the site.

And there is more: I received a friend request on Facebook from this person; the accompanying message was, again, disparaging of the head moderator of the aforementioned web site. I rejected the friend request and received a message asking why. Because we aren't friends in real life, and because you harassed me when I said I disagreed with you about vaccines causing autism.

Some of the people reading this may know of whom I speak. I have been very careful in this post to avoid naming the web site or the person in question; I haven't even given the individual's gender. This is because I do not wish to draw more negative attention to the person, who I believe has Asperger Syndrome (AS) but probably is undiagnosed - and if there has been a diagnosis, there is a severe lack of understanding about AS itself and how it affects one's life. If this person comes across this post and chooses to respond publicly, obviously I have no control over that. I have done what I could to preserve this person's privacy and dignity. I would ask that commenters to this post do the same. Thank you.

Recently in an ADHD community I belong to, we've been trying to figure out what's going on with the responses we get when we tell people we have ADHD. Everything from "I don't believe in labels" to "ADHD doesn't exist" to "oh, everyone has that problem sometimes." The best explanation I've seen so far is basically that people have been societally conditioned to believe that trying hard will always result in success, and that a lack of success is an indication of laziness and/or lack of passion and/or self-involvement. (Severe paraphrase, as I haven't asked permission to quote or anything like that.) This absolutely explains the last two responses, but not the first.

What I've noticed is that people who "don't believe in labels" (which isn't actually true, by the way; they still use words and nouns and names...) are often people who either work in the field in some way (and so they really ought to know better) or people who are undiagnosed (and so are possibly afraid of the label) or both. I think that people who "don't believe in labels" mean well - they are trying to make us feel better about our disability by telling us that they don't view us as being any different from them.

Here's the problem with that: it's still a form of ableism. On the surface, it's better than "ADHD doesn't exist" or "everyone has that problem sometimes," but practically speaking it denies the very real fact that there are huge differences in the way I process the world, experience time, and manage my life. And all three of these responses invalidate my experience as a woman with ADHD. I find all three responses incredibly offensive, as they deny the reality of my entire life.

On to the comment I mentioned at the beginning. You can find the post itself here. It is basically a quote of an article from NewScientist. The parts the blog owner put in bold are very interesting reading, and definitely cause for pause and thought. This is what I said:

I definitely think there are many things wrong with the DSM and the methods they use to decide what goes in, what comes out, and how to classify things.

I also agree that a lot of the time the treatments only deal with symptoms, not causes. Apparently there’s a lot of discussion about antidepressants right now, as they don’t actually do what people thought they did.

At the same time, I have a diagnosis of ADHD, and I know that I need to get back on medication if I am going to be able to lead the kind of life I want to lead right now.

What I would like to see is more research into the causes of mental illness and mental disorders. Rather than looking at a list of behavioural and emotional symptoms, there should be scans and tests done to determine the cause and appropriate treatment.

For one thing, it would eliminate the “try this” approach currently espoused by psychiatric professionals, in which people are prescribed medication after medication until something “sticks” (i.e., works). For another thing, it would greatly lessen the number of people given medications to deal with side effects to deal with side effects to deal with side effects…

Hm. I guess that about sums it up, really. There may well be more coming on this subject in the future, but this will do for now.

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I am SICK of this kind of garbage.

2009-11-23T11:07:00.005-07:00

I got a piece of SPAM in my e-mail this morning because I "have expressed a public interest in advancing education and research regarding Autism." Just so everyone's clear here: this blog doesn't mean I want spam in my Inbox. In fact, if you've read my blog, you will know that this blog doesn't mean I want information about curing autism or ADHD, either.

Yup, you've guessed it: that's what this e-mail was about. *sigh* I've unsubscribed and told them in the feedback that they're insane and that if they'd read my blog they would know my reply and wouldn't have sent me the spam. But come on, people. Ignorance is not an excuse. Not when the answer is right here, in plain sight.

Shall I spell it out for you?

I AM NOT INTERESTED IN FINDING A CURE FOR AUTISM OR ADHD.

That doesn't mean I think life is all hunky-dory for the families of autistic or ADHD individuals. I know for a fact that it isn't. It doesn't even mean that I think autistic or ADHD people are all happy as they are. I know for a fact that a lot of them aren't.

But I don't think the answer is elimination of autism or ADHD.

There's a lot of education that needs to be done, of both society and autistic and ADHD individuals and their families. The difficulties autistic people face in their lives aren't all due to societal discrimination, but an awful lot of problems would be ameliorated if society were more accepting of the kinds of differences we see amongst the disabled.

As for me, myself, and I, well, I have ADHD. I don't make that a secret. In fact, I'm pretty dang open about it. And you know what? Not only do I not want to be cured, I also don't think that all these people marketing behavioural strategies plus homeopathic cures are on the right path. Not all ADHD responds to medication, and behavioural interventions take an awful lot of dedication if they're going to work properly. I've been off medication (Dexedrine is my med of choice) since May 2008, and I am done with being med-free. I've tried remembering to take herbal stuff instead, and it just doesn't work. I'm losing the gains I made in the first couple of years post-diagnosis. In the last two months, I have seen a serious decline in my ability to manage my life. The most recent posting I read - really, skimmed, since by now I've read it all before - said that there aren't any long-term results posted about ADHD medication in children. A brief scan of PubMed indicates that this is a false statement. In addition, the blog entry states that ADHD medication causes anxiety and depression. In my experience, if the medication causes anxiety, it's the wrong medication. Find something else. Try something else. The right medication won't cause anxiety or depression. To be perfectly honest, I'm more anxious right now than I have been since I started taking medication for my ADHD. And while my mood seems to have mostly evened out, I do have blips on a soberingly regular basis. The right ADHD medication will make this better.

Until I get back on my meds, I suppose I could just stop clicking links.

Or, better yet, here's an idea: how about all these people who don't have autism or ADHD stop trying to "fix" me, or "eliminate" people like me, and start learning how to help me have a happy, fulfilling life?

Now, there's a useful way to spend your time.

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It's no secret.

2009-10-21T15:47:00.006-06:00

It's no secret that I have ADHD. I'm open about it. I talk about it whenever it seems appropriate.

It's no secret that I don't think autism is The Worst Thing Ever. I've known a lot of kids and a lot of adults (both online and off) with autism spectrum disorders, and I have found them all incredibly interesting and entertaining (though sometimes frustrating) human beings.

It's no secret that I don't currently take medication for my ADHD. I stopped in May 2008. I'm reconsidering that decision, based on the difficulties I've been having in my life since I stopped working full-time - that lack of structure seems not to agree with me. I'm sure I'll post once I come to a final decision about it.

It's no secret that I don't think autism is caused by vaccines. I think it's primarily genetic, possibly with some kind of environmental trigger. Even if that trigger turns out to sometimes be vaccines, I don't think that's a reason to refuse vaccination for children, since I would prefer a live autistic child to a dead non-autistic child (and a lot of kids who don't get vaccinated are autistic anyway, so it's a crap shoot either way). I advocate intelligent vaccination schedules - check blood titers prior to vaccination (don't give a vaccine if there are already antibodies in the blood), only give one vaccine at a time (and spread them out), and weigh the risks of actual vaccine damage for each vaccine. The risks of not vaccinating far outweigh the risks of vaccinating, in my opinion; herd immunity is beginning to dwindle because of the number of people who aren't allowing their children to be vaccinated, and that means a rise in things like pertussis (which can kill infants) and measles (which isn't fun and does, occasionally, kill people).

It's no secret that I am a Christian. I was raised in a Christian home, and I continue to attend church every Sunday. I even wear a cross earring in my left ear, in addition to the usual earrings most women wear.

It's no secret that I think that trying to teach autistic children to pretend that they aren't autistic is damaging to their psyches and completely unhelpful. I think it makes a lot more sense to teach to their strengths, to focus on effective communication, and to ensure that the base reasons for disruptive and/or inappropriate behaviours are sought out and dealt with. (In other words, "task avoidance" is probably not the actual reason for a behaviour - figure out what about the task is distasteful and deal with that.)

It's no secret that I am something of a writer. I don't mean just this blog, I mean fiction. I have had an article published (Calgary's Child in fall 2007), but no short stories or novels. I have participated in National Novel Writing Month (NaNoWriMo) every year since 2001 (except for 2003), been a Municipal Liaison (ML) since 2005 (Calgary 2005-2008; now Saskatoon), and moderated the Character & Plot Realism Q&A forum since 2006. In 2006, I finished the 50,000 words that qualifies me as a winner. I achieved the goal again last year, in 2008. My novel last year was supposed to be the second in a series, but after some thought I have made it the first in the series, decided to rewrite my 2006 novel to be the second in the series, and this year's novel will be the third in the series. I'm writing Young Adult novels about teens with disabilities. I'll let you know when they start being published.

It's no secret that I have a low tolerance for disrespect. One of the reasons I think as I do about how we approach autism is that I think many current methods are inherently disrespectful of the individual's wants and needs. Arguing with someone who has a disorder over whether or not that disorder exists is disrespectful and devalues the struggles that person faces every day.

It's no secret that I don't censor people who disagree with me, either. Looking through the comments on this blog (especially my previous post) should make that abundantly clear. I don't delete comments that disagree with me, I respond to them (when necessary). I am a fan of discussion. Of course, my preference is that it be done respectfully.

It's no secret that I'm more interested in quality of life when it comes to disorders. I care less about what causes a disorder and more about how that disorder affects a person's life. I want to help people have happy, fulfilling lives, whether that means they knit blankets, run a business, or volunteer at the YMCA. The point is that people with disabilities should get to decide what to do with their lives, whether or not it's "productive" or "contributes to society."

In essence, it's no secret that I think that all human life is sacred and valuable, simply by virtue of the fact that it exists.

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I almost missed it - ten years ago today...

2009-08-21T21:23:00.004-06:00

Ten years ago today, I embarked upon this strange and wonderful journey. It was the day I started my training in Lovaas-style Applied Behaviour Analysis (ABA). I was one member of a five-person team of therapists who would be coming in to the family's home to work with their three-year old son. He would be scheduled for over 40 hours per week, so that if anyone missed one of their two-hour shifts, he would still be likely to get his full 40 hours in. That 40+ hours was scheduled across all seven days of the week, though there were only two sessions on Sunday - plus our weekly team meetings. My starting wage was only $7.50 per hour, and I was working, on average, 10-12 hours per week, not counting the meetings.

Our consultant came to Thunder Bay from the Wisconsin Early Autism Project (WEAP). She conducted a three-day start-up workshop that started on August 21, 1999; she returned every three or four months after that, to conduct two-day follow-up workshops at which she advanced the curriculum and taught new techniques to the therapists as necessary. The child's parents paid for her transportation, her hotel, and a rental car, plus (I am sure) her fee.

The child was incredibly cute, the youngest of three children. His two older sisters were sweet and wanted to be involved in everything, but of course that's not always possible. The boy had blue eyes and light brown hair cut in a bit of a mullet (primarily because he refused to go near a hair salon). He was still in diapers. He didn't speak.

We had some teaching from the consultant about what autism is, what ABA is, and what we would be doing. Then we played with the child one-on-one, trying to develop a bit of a rapport with him while the others looked on.

The consultant taught us the techniques. Setting out the materials, what words to say, how to say them, how to prompt, and how to fade those prompts. How to praise, what to use as reinforcers (e.g., gummy bears, sparkly toys), and how to let him know he got the wrong answer. How to take data.

Then she taught us the "programs" that we would begin with - the same ones that are often the beginning of any ABA program (my memory may be faulty; I don't recall which we started that weekend):

Receptive Labels, in which the therapist sets out an array of items and requests one of them. The student is to pick up the correct one and place it in the therapist's waiting hand. This begins with 3-D objects and moves to pictures.

Receptive Imitation, in which the therapist performs an action after saying, "Do this." The student is to imitate the therapist's action. This begins with objects (e.g., hitting a peg with a hammer, pushing a car off the table) and moves to gross motor actions (e.g., turning around, clapping).

Matching, in which the therapist sets out an array of items and gives the student the match for one of them. The student is to place his item next to the matching one. This begins with 3-D objects and moves to pictures.

Receptive Commands, in which the therapist tells the student to perform an action. The student is to perform the action. This progresses from Receptive Imitation; the student is taught actions in Receptive Commands only once they are mastered in Receptive Imitation.

Puzzles, in which the therapist removes the pieces from a puzzle and sets it in front of the student. The student is to put the puzzle back together. This begins with simple shape puzzles with peg handles and pictures below to show where they're meant to go and progresses to full jigsaw puzzles.

Expressive Labels, in which the therapist holds up an item and asks its name. The student is to label the item. This progresses from Receptive Labels; the student is taught to say labels only once they are mastered in Receptive Labels.

Vocal Imitation, in which the therapist makes a sound after saying, "Do this." The student is to make the same sound. This begins with simple sounds and progresses to various combinations, until the student is imitating full words.

There are many other "programs" used in ABA programs, like Toy Play, Spelling, and Fine Motor. I have worked in a lot of ABA programs over the years, and I've worked through most of these programs.

Ten years.

That's a long time. I've had the privilege of working with many wonderful children over the years, and many amazing families to boot. The lengths to which these children's parents are willing to go, to provide their children with what they believe is the best possible educational option, is phenomenal.

And while I do not want to go back to the world of teaching autistic individuals to pretend they are normal, I do recognize the value of that initial training I received, ten years ago this weekend. It taught me how to teach. It taught me how to manage behaviour. A few years later, I was getting compliments from my fellow Sunday School teachers for how I managed my elementary students and dealt with the discipline - the other teachers were older than I, and parents. Just last year, I was able to manage a large group of writers as I headed up NaNoWriMo in Calgary.

My time as an ABA therapist has certainly come to a (welcome) end, but thanks to it, I learned how to give myself structure. I learned how to break things down into steps so that they are more manageable. I learned that it's okay to get help if you've never done something before. I learned that there is a progression to learning, and I learned how one thing builds upon the last until you have a strong foundation... and then a strong building.

This entry's icon was created by the author.

Edit:
In a comment elsewhere, I was asked what I think should be done with autistic children - leave them unable to communicate with friends, parents, or siblings?

Of course not! And any regular reader of this rather irregular blog should know that by now. :) Here is what I said in response:

Teach them. But not to pretend they're normal. Autistic people need to learn to deal with the world, not pretend they have no differences. In order of importance:

1. Communication (Effective, functional)
2. Sensory Processing Differences (Arousing, coping, calming)
3. Physical Health (Medical, dental, psychological)
4. Life Skills (Hygiene, cooking, cleaning, money)
5. Academics (Reading, writing, arithmetic)
6. Behaviour Management (May not be necessary, if the rest is done well)

ABA is about teaching autistic children to pretend they're normal. It's putting sub-par glossy paint over wood that really just needs a sanding and a coat of varnish. Eventually it bubbles and peels or chips away, and the end result is uglier than it was to start with.

(Also: why do so many people think that the alternative to teaching autistic children to pretend to be normal, or the alternative to ABA, is to not teach them anything at all?)

Respect, dignity, and rights.

2009-07-10T05:39:00.005-06:00

re⋅spect /rɪˈspɛkt/ [ri-spekt]
–verb (used with object)
to hold in esteem or honor: I cannot respect a cheat.
to show regard or consideration for: to respect someone's rights.
to refrain from intruding upon or interfering with: to respect a person's privacy.
to relate or have reference to.
(courtesy of Dictionary.com)

dig⋅ni⋅ty /ˈdɪgnɪti/ [dig-ni-tee]
–noun, plural -ties.
bearing, conduct, or speech indicative of self-respect or appreciation of the formality or gravity of an occasion or situation.
nobility or elevation of character; worthiness: dignity of sentiments.
elevated rank, office, station, etc.
relative standing; rank.
a sign or token of respect: an impertinent question unworthy of the dignity of an answer.
(courtesy of Dictionary.com)

right /raɪt/ [rahyt]
–noun
a just claim or title, whether legal, prescriptive, or moral: You have a right to say what you please.
Sometimes, rights. that which is due to anyone by just claim, legal guarantees, moral principles, etc.: women's rights; Freedom of speech is a right of all Americans.
adherence or obedience to moral and legal principles and authority.
that which is morally, legally, or ethically proper: to know right from wrong.
a moral, ethical, or legal principle considered as an underlying cause of truth, justice, morality, or ethics.
(courtesy of Dictionary.com)

In the comments to this post, I found several references to all those poor autistic adults who are stuck in institutions because they weren't given ABA and never recovered, so they simply are incapable of higher-level cognition or any form of independence and need to have their lives dictated by non-autistic people, who of course know better than the autistic people what is best.

Many people have written elsewhere about institutions, and these people have personal experience with them, so I won't address that specifically (I would link to those posts, but can't find them right now; please feel free to share in the comments). What this post is about is the attitude of non-disabled people toward individuals with disabilities.

Basically, the attitude can be boiled down to "I'm worth more than someone who has a disability, because I am not disabled." This lack of respect for others leads to the removal of dignity and the stripping of rights of individuals with disabilities.

Let's be clear here: a person is worthwhile because he or she is a person and is alive. I don't care if the person can't communicate anything more than basic emotions and is unable to perform any personal care tasks (e.g., A, who I wrote about here), is able to speak in complete sentences but has mobility difficulties (e.g., J, who I wrote about here), or is able to pass as completely non-disabled in their everyday life and is able to perform most necessary day-to-day tasks without support (e.g., my friend DJ, who blogs here). There is a certain intrinsic worth to every human life, and we stand to learn something from everybody, no matter their cognitive abilities.

All people are capable of some level of understanding. Organizations that provide services to individuals with disabilities often create "plain language" versions of their literature, to give individuals with cognitive delays (or even English as a second language) a better chance at understanding it. Some organizations I know of in Alberta have gone so far as to help the individuals they serve create videos that make processes clearer for everyone. (Please note: these video projects are done at the behest of the individuals receiving service, so nobody is being exploited.)

Respecting a person means preserving their dignity and enforcing their rights. It means understanding that their opinions about things might be different. It means allowing them to speak out, even if what they say is disturbing on some level. It means granting privacy. These principles are important for everyone, by the way, not just individuals with disabilities. We need to learn to respect everyone in our lives.

Arguing for respect does not deny the difficulties many people face as a result of their disabilities. I would say that A, the woman I mentioned earlier, is the most severely disabled person I have ever met. Yet she lives as full a life as possible, in her mother's home. She has friends as well as staff, and I got to see video of her birthday party the day I met her family. She couldn't open her presents, but a niece did so for her, and she smiled throughout the process - an indication that she understood that these things were for her, and that she liked them. Indeed, clothing was obviously chosen with care and attention to things like A's favourite colour and what is popular right now for young women in their twenties. A will probably never be able to say words, and she will probably never type blog posts. But she is cared for and about, and her needs and desires are considered carefully by those around her. That is respect.

There is more I would like to say here, but this will suffice for now; my own disability is causing my writing to become more disjointed than I would like. Eventually I will find the words and put them up for all to see.

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New e-zine.

2009-06-24T18:15:00.002-06:00

In 2005, I had an idea for a magazine.

Well, it took a while, but there is finally a web site up and I am hoping to have an issue out in October. Autisticonnections is going to include writing and artwork by individuals with autism, autism-related disorders, and other neurological disorders like ADHD. We will have poetry, fiction, and personal essays, and hopefully a few proper articles, as well. None of the contributors will be neurotypical, if at all possible.

Please check out the web site at http://autisticonnections.org. I would love some volunteers to help me out with this project, and of course I need contributors!

Ableism is bigotry and discrimination at its worst.

2009-06-17T19:46:00.006-06:00

One of my dear friends, J, has cerebral palsy and fibromyalgia. As a result, she has mobility issues that she handles quite nicely with her service dog and wheelchair. She is sometimes able to navigate without either, but as a general rule she prefers to bring her dog to help her get around. This dog was trained by her and is incredibly well-behaved. He wears a vest when he's working, so you know when you can't pet him. The two of them do presentations about disabilities and service dogs for schools and organizations.

J and I met via NaNoWriMo, that writing contest I do every November (you know, where I have to write 50,000 words in 30 days). As you may or may not be aware, I was the regional coordinator (ML) for Calgary from 2005 until 2008. (I may choose to take up the mantle for Saskatoon, but that's beside the point.) I take my ML duties very seriously, and always did my best to ensure that the locations I booked for meets were accessible for individuals with disabilities who used wheelchairs as well as for anyone who had to rely on public transit to get where they were going. J brought her dog along to the first meet she came to, and it was a complete non-issue. There were nearly 50 people in our party, and the place was busy, but he was great and lay under the table and didn't disturb anybody. He behaved the same way at every other meet she brought him to. The one time J used her wheelchair, it was cumbersome and unwieldly, and there were a lot more issues getting her where she needed to be.

This weekend is the birthday of J's mother-in-law. There is much drama surrounding whether or not the dog is to come to the birthday dinner, which is being held at a restaurant he has been to many times in the past.

J's sister-in-law asked if they could leave the dog behind, purportedly because when she told her mother that the dog would be there, her mother sounded "sad." She says that J should just use her wheelchair.

There are many reasons why the chair is not an option, the main one being that J uses botox injections to loosen up her leg muscles, and at this point in the botox cycle she is in pain a lot of the time. The chair exacerbates this pain. That alone is reason enough to forgo the chair and bring the dog instead. In addition to being more difficult to maneouvre, the chair will draw more attention than the dog, and it limits J's independence. Given the fact that Aids to Daily Living are meant to increase the independence of individuals with disabilities, it should be fairly obvious that the dog is a better choice, period.

Except, apparently, the mother's feelings about this matter trump the many reasons why the dog should come. According to the sister, the dog should not be an option because her mother should be happy on her birthday, and because the mother sounded sad on the phone, the dog's presence would make her unhappy, and that is all that matters.

Unfortunately for J's in-laws, one person's happiness does not trump someone else's right to be as pain-free and independent as possible, especially when the methods to be employed break no laws and put nobody in physical danger.

Here is how I put it on Facebook (names have been altered):

There is absolutely no reason why [the dog] should be left at home.

It is discriminatory to try to mandate what Aids to Daily Living (ADL) an individual with a disability can and cannot use. The point of ADL is to INCREASE INDEPENDENCE.

[The dog] is a better option than the chair because the dog increases independence much more than the chair does. I have seen both in action, and the chair is much more difficult to deal with.

I have never even THOUGHT about asking that [the dog] be left behind for events that I have run, because it would be discriminatory to do so. Accommodation means booking the event in a place where individuals with disabilities will be comfortable and that is easy to access for those with mobility problems.

The chair causes pain, as well, which is important to consider. I don't think someone's emotional comfort is more important than the physical comfort of someone else, especially if the person who will be in physical pain is already dealing with constant pain anyway. What kind of a person would expect or even ASK that of somebody? Seriously?!?

Accepting somebody means accepting their disability, as well. This means accepting the different ways they cope with their disability. Some people with ADHD take medication, others do not. Some blind people use guide dogs, others use a cane. Some deaf people communicate using speech, some use sign language. Some people with mobility problems use a service dog, some use a wheelchair, some use a scooter, some use a walker, some use a cane. Some people with epilepsy have a service animal that alerts them to seizures, some don't. There are a lot of different ways to deal with disabilities, and only the person who actually has the disability knows what is best for their particular problems.

Someone needs to ask C's mother why she doesn't want the dog there. Sparing her feelings is a ridiculous excuse for not doing so. So far, all of this discussion and drama is taking place without her input, and that is not right. So somebody ask her. Then maybe there'll be some light shed on the situation, and a properly informed decision can be made.

In short, your closed-mindedness should not be J's problem, and if she and C choose to attend this dinner, I really hope they bring [the dog] along, because that is what is best for J and her disability.

The response from the sister was to completely ignore all points and focus in on her mother's happiness on her birthday. To which I replied as follows (names modified):

Wow, B, did you even read everything I wrote?

Yes, a person's happiness on their birthday matters.

However, the RIGHT of a person to be INDEPENDENT trumps the happiness of another person. [The dog] helps J to be more independent than the chair does.

Also, the RIGHT of a person to be as FREE OF PHYSICAL PAIN AS POSSIBLE trumps the happiness of another person. [The dog] is a less painful option for J right now.

Have you asked your mother what she thinks yet? Cuz if you haven't, you really should.

No, my opinion doesn't affect the situation. I never thought it would. However, it would be an incredibly Good Thing if you took a moment to actually LISTEN to those of us who deal with disabilities on a daily basis.

This is ableism, pure and simple. C's family (J's in-laws) is assuming that J can choose which mobility aid to use based on the convenience of others, and this is simply not true. While those of us who are mobile have the freedom to choose between walking, running, riding a bike, and any number of other choices, J hasn't got those choices. If she's going to get somewhere, she often needs the dog or her wheelchair. I think she does sometimes use another mobility aid, like a cane of some kind, but I have not seen her use it. I have, however, seen the dog in action, and I think he is probably the best option most of the time.

The extent of the sister's bigotry, by the way, is seen in her assertion that if J were blind and used a guide dog she would still ask that the dog be left at home. I can understand, to some extent, asking that a service dog be left behind, since they are less common and not as well understood as guide dogs. But to ask any individuals with a disability to change his or her accommodations to suit your sensibilities is outrageous. (And we know it's not allergies because C grew up with dogs in her home. This is something directed entirely at J and her service dog and seems to be something to do with disabilities in general.)

As J has put it, the dog is a part of her. Accepting J means accepting the dog. That's all there is to it.

To sum up, let me give the response Brad Bill offered over on Facebook (again, names have been altered):

The long and the short of all this seems to be that B has fallen on the wrong side of this issue. And the bigger problem is that --even if she knows it-- there's no graceful way for her to climb down and admit she's at fault.

As was said earlier, a person's right to be comfortable and largely pain-free will always be more important than someone else's perceived "comfort" or "happiness" --even on her birthday.

We do live in a free country, so B is perfectly entitled to think/feel whatever she likes, but anybody with a shred of wisdom and compassion and decency will know better.

Sad.

Sad it truly, truly is.

Detriment of the child?

2009-05-02T11:24:00.004-06:00

I now have confirmation that the Canadian Union of Public Employees (CUPE) 748, in BC, is planning to remove the "detriment of the child" clause from its collective agreement with the school district(s) it serves. This clause ensures that no changes are made to the staffing for a child with a disability if that disability is one that requires consistency in said staffing (i.e., children with severe disabilities that require specialized supports in order to be included in their school settings; such support positions typically pay more than others).

To make things more clear, what this means is that special education aides (SEAs) in the union will no longer have any job security whatsoever, unless they're lucky enough to have the seniority required to let them pick and choose the plum assignments. While education and experience will likely still have a bearing on the hiring decisions, gone will be the days of a child retaining his or her aide throughout several years of his or her education. Retaining an SEA is important, mainly for continuity of care and security of the child. It also means that precious time is not lost at the beginning of the school year, as the SEA and the child get to know one another. When a change is made, the new hire needs to be introduced before the end of the prior school year, and the old aide needs to train the new one, gradually stepping back until he or she is completely out of the picture.

Without the "detriment of the child" clause in place, the schools will not be able to take into account the wishes of the children or families they serve. No, they will, instead, be required to allow 60yo Anne, who's been a secretary for the last 20 years, be an SEA for Billy, an 8yo autistic child, because she's taken a couple of courses in being an SEA and has seniority over Elizabeth, who is 24yo, has been working with autistic children for the last five years, and has been Billy's SEA for the last two. (Please note: None of these people are real. I made them up. It could happen, though, and that's the scary thing.)

I hate unions. Let's be clear on that right now. I think unions are, by and large, a huge waste of time. They are still necessary in some industries (e.g., mining), but overall they cause more headaches than they solve. Unions benefit the people at the top and screw over the people at the bottom. No different from the rest of society, I suppose. Part of the reason so many people in the automobile production industry got laid off was that the union refused to renegotiate wages. So, since the companies had to cut costs somewhere, they had to fire a bunch of good workers because they couldn't afford to pay them anymore. That's how messed up unions are.

Now, let's look at how unions (at least in Canada) work for the schools. What we have is a teacher's union and a support staff union. In the teacher's union, we find - well - teachers. In the support staff union, we find secretaries, bus drivers, janitors, librarians, and SEAs, to name a few.

What's the problem here?

The problem is that SEAs work directly with children and enhance their learning. Without the SEA, the child often can't attend school. This is very different from the other occupations included in their union - these occupations do not work directly with the children, and their presence does not make or break the children's education.

Real life example of how completely screwed up this system is:

A couple of years ago, the teachers in Calgary went on strike. Okay, that's the way it goes. All the children stayed home from school, because there were no teachers, so no education for any of them. Eventually, the union and the school board got things sorted out, and everyone went back to school.

Then the support staff union (CUPE) went on strike. The difference here was that all the kids still went to school. Except the kids who needed SEAs.

This is not equal opportunity education. It is not equality. It is discrimination.

If there must be unions, the SEAs should be in the same union as the teachers, or they should have their own separate union.

Children shouldn't be denied an adequate education simply because some people at the top of CUPE want to make a buck.

I can't escape it.

2009-04-23T16:46:00.003-06:00

I'm not totally sure I want to, anyway.

I walked over to Tim Horton's this afternoon. This is a daily occurrence; it takes about 15 minutes to get there, I have a mocha and read my current novel, and then I walk home (or, today, to the library). It's a good walk, I go quickly, and I get in my cardio for the day.

I went too late in the afternoon today, though; I'm still experimenting with when is good - this location is pretty busy, and I sometimes have trouble finding a place to sit. So I ordered my drink and looked around for somewhere to sit.

The 4yo girl was blonde and very cute. She was sitting in a high chair at a table with her mother and (I assume) grandmother. I took the table next to them, and the child and I exchanged looks. I smiled, since I'm friendly and like children, and she smiled back. Then she started turning quickly and gasping at me, so I responded appropriately to her overtures; apparently this was the way to go, as she started tipping her head back to look at me upside-down. I responded by turning my head so we were both upside-down.

This did not go unnoticed by the adults in the child's life. I was informed that this little pixie is "actually very shy." (Not the first time that a child behaves toward me as if I were an old friend right from the start!) Her mother told her to ask me my name. She did so, and we embarked upon a 15-minute friendship. The child's voice was very quiet, and I had to lean in close to hear her when she spoke to me. It didn't help that I kept getting distracted by her adults' conversation.

It sounded like the little girl's older brother was having trouble at school. There were changes being made to how he was being dealt with. When he tantrums, he is put into a time out room (adjacent to the classroom), and the class is now being vacated because he makes so much noise that the others in the class can't get any work done, anyway. Classic situation for an autistic child, don't you think?

I held my tongue, though I desperately wanted to ask them if there'd been a Functional Behaviour Assessment done, and if the triggers for these meltdowns had been identified. It sounds to me like the boy's school is reacting instead of being proactive.

But I said nothing, because I am a stranger - not just to this little family, but to the city. There is no reason for anyone to listen to me.

Except that I care.

Next time, I think I'll speak up.

A bit about me and ADHD.

2009-04-20T18:19:00.003-06:00

This was originally posted at The Buzz on Meds.

I was diagnosed with ADHD when I was 28. I'm now 32. It was February 11, 2005. I had gone in looking for the diagnosis, but I definitely wasn't prepared for it to be confirmed! I came home with mixed feelings. Did the diagnosis change who I was? Did it matter? What should I do next?

Well, I went to my GP with my papers and all; since I'd been diagnosed by a psychologist, I needed the GP to prescribe my medication. He stonewalled me (wanted to refer me to a psychiatrist, said, "You've waited this long, you can wait a little longer"), even though the medication I was looking at was Concerta, which is notoriously difficult to abuse!

I changed doctors.

I was put on 36mg Concerta, once a day, to start. It worked pretty well at first, but the rebound was bad and it stopped working well after a while.

So we moved up to 54mg Concerta once a day. That was an experience and a half! I had been told at my assessment that I was using anxiety to compensate for my ADHD symptoms and if I went on much longer without getting help, I would probably develop a full-on anxiety disorder. Well, 54mg Concerta gave me a week-long anxiety attack! Needless to say, I went back to the 36mg dose in short order.

I tried using just natural remedies like 5HTP that summer. I realized it wasn't working the day I managed to talk for a full 45 minutes, non-stop, about two or three different topics while driving my brother home from church. Oops! I called my psychologist, and she suggested I ask the doctor about Dexedrine, because it is often better for people with anxiety.

I was put on 10mg, twice a day, and it was amazing! No rebound, and an instantaneous effect! I had no appetite for three weeks, which wasn't ideal as I tend to forget to eat when I DO get hungry, but aside from that, I loved it. (I also lost about ten pounds, which was a great bonus.)

I stayed on that dose for about six months, then went to talk to my doctor about the problems I was having with getting myself to go to bed. People experienced with having ADHD know that there's this thing called inertia that makes it so we can't change activities. Well, that was happening really badly for a while. The only problem was, the doctor decided that the Dexedrine must be keeping me up, and he switched my medication! (What would have been better was giving me a 5mg dose for after work, to keep the medication in my system until bed time.)

So I was taking 36mg Strattera, once a day. It was okay, but really didn't help me at all. I actually found myself having a difficult time understanding things I read (not good for a consummate reader whose reading comprehension has always been above-average) and making really weird typos (such as typing 'the' as 'eht' and other really weird mistakes that happened both between hands and within the same hand, and I often spelled words completely backwards that were longer than 'the'). Still, I stuck with it for six months.

The day after my 30 birthday, I went to the psychologist again and talked to her about the Strattera. She started to write a note to my doctor about getting me back on Dexedrine with extra 5mg doses, but then decided to have me do a quick assessment for depression. I scored very close to the point where I would have been involuntarily committed due to the severity of my depression.

So, off to the doctor I went, note in hand. Except the note said I needed an antidepressant and no more Strattera. I had to wean off the Strattera, and then I started taking 150mg Wellbutrin, once a day.

Wellbutrin was HELL for me. I spent a week working half-days because I had to be at work for some of the time, but I felt hungry and nauseous ALL THE TIME, and I only felt semi-okay if I was lying flat on my back. The doctor took me off the Wellbutrin pretty quickly and put me on Cipralex instead (it's the Canadian version of Lexapro).

I took Cipralex from October 2006 until May 2008, and was on Dexedrine again for most of 2007. In May I weaned myself off the Cipralex, and I have been med-free ever since. I currently take St John's Wort to help keep my mood stable and check my anxiety.

While I was dealing with all the medication changes, I was also in counseling. I had started it before I got assessed, and was doing a Women's Self-Esteem group at the time. That was very helpful. I stopped counseling in the spring or summer of 2006, I forget which.

So, what do I do now?

I have had a Palm Z22 since the fall of 2005. I use it to keep track of my schedule and my to-do list. I set alarms to remind me to do some things - the alarm serves as a trigger to change activities. I also set an alarm for appointments that goes off an hour and a half before I need to be somewhere, because it takes me about an hour to get out of the house, so that gives me half an hour to get where I'm going.

I have methods for doing things - routines that keep me on track. The structure of my routines helps me manage my ADHD symptoms. The only problem with that is that when my routines get disrupted, I get really flustered and anxious, and then I can end up immobilized.

I used the medication, when I was taking it, to help me focus while I learned the skills I needed in order to manage my time and my life in a more effective manner. Things aren't perfect, but they are much better now than they were when I was trying to get by using anxiety to compensate for my problems.

I'm not anti-medication, either. If I decided I needed more focus, I would go back on Dexedrine without a worry. But I know that I don't need it, so I don't bother. I think that if you can use medication the way I did, to help you focus while you learn the skills you need, and then you are able to stop using it, that's great! I am also very aware, however, that a lot of people simply aren't able to stop taking the medication. It's different for everyone, and we all need to do what makes the most sense for us.

We are moving...

2009-02-17T16:31:00.000-07:00

It was bound to happen sooner or later. My boyfriend, with whom I have been living for just over a year, has gotten a job in his field. Unfortunately, taking this job necessitates a move from Calgary to Saskatoon.

He leaves for S'toon on Friday (February 20), as the company he will be working for wants him to start on February 27, and he needs to have time to look at places to live and (hopefully) find a good one for us. I will follow at the end of March, cat and guinea pigs in tow.

I hope you all enjoy reading over the next six weeks, as I attempt to remain organized enough to actually pack an entire house by myself!

Disability and Sexuality: A Matter of Rights?

2009-02-14T00:00:00.003-07:00

So I wasn't sure if I could participate in this blogging adventure, but then I met a very cool family and learned of a very cool story about them. I'm not going to give any identifying information, of course, but that is definitely not needed for this post.

The characters:

A, a 20-something woman who requires 24-hour care, is unable to move independently, and cannot speak or otherwise communicate except through body language and facial expression.

C, A's mother, a strong woman who believes in the rights of individuals with disabilities and will fight for her daughter's right to have a full life until the day she dies.

A's staff members.

A lives at home with her mother, and the staff come into the home to assist C to care for her daughter.

The story:

One of the staff came into the house one day and said, "C! The Chippendales are in town! We have to take A!"

C wasn't totally sure about it, but A was a legal adult, so she decided to have the staff explain what the Chippendales are to A. They would be able to tell from A's reactions whether or not she would like to go.

A got very excited as they explained the Chippendales, so they purchased the tickets. The day of the outing, A allowed three people to work on her. They did her hair, her makeup, and her nails. They got her all dressed up, and off she went (without her mother, of course).

Typically, when A gets that excited about something, she wears herself out and falls asleep partway through the activity. But this time, she stayed awake for the whole show, and she got two kisses - for free!

Next time the Chippendales are in town, she'll be going again.

When C told me this story, she prefaced it by saying that I might think it was inappropriate. But I don't. Not really. I mean, I don't know that I would choose it for my own child, but that's primarily because I probably wouldn't want to go see the Chippendales and wouldn't think that my child would want to go, either.

The important thing here is that C recognizes that her daughter is a sexual being, and that, despite the many barriers A faces in her life, she has the right to enjoy her sexuality in whatever way is possible for her. And that's why I chose to post this story for this blogging event.

This post's icon was created by the author.

Well, that got a little heated... (on ABA) :: Part 2

2009-02-09T16:05:00.003-07:00

I got a reply to what I wrote last night. The person with whom I am discussing this is currently working as an ABA therapist in Ontario (pardon me, that's IBI in Ontario). I'm afraid I don't recall just when she finished her training program.

She said she's skimmed Michelle Dawson's paper on ABA and will read it later; she is offended by the use of "autistics" in it:

We only use people first language, so we don't really use the word "autistic." So, to me Dawson's article is like reading an article advocating the well-being of First Nations people that keeps referring to them as "Indians."

She also points out that they don't use aversives at all and defines the types of punishments used in the programs. (I, of course, know all about this, as I worked in the field for several years.)

Ontario defines ABA as a treatment, not an educational method. Why am I not surprised? Let's ignore what it truly is in favour of the definition that will get the most attention! (That's autism advocacy at its best, people!)

And, of course, I get the line about helping the children be as independent as possible. "It's not about making them appear normal, it's about independence!" Except that in ABA programs, little attention is paid to the actual developmental curve the child is on. No, we must instead focus on where the child "should" be, according to his age. Never mind that autistic development is not only delayed, it is markedly different from non-autistic development. That's why the skills profiles of autistic people are spotty. They tend to develop more advanced skills without first developing what the rest of us would consider to be "foundation" skills. I don't totally understand how that's bad; Einstein was unable to perform simple arithmetic, but he was able to come up with profound theories about how the world functions.

Anyway, here's what I said in response:

Michelle herself is autistic, so she's using the term she herself is most comfortable with. I prefer to use the word as an adjective, but I say "autistic children," "autistic adults," and "autistic individuals" out of respect for the preferences of the vast majority of autistic people I have met, both on and off the internet.

I would be appreciative of the literature review reference.

ABA is educational. That is what it is. Pretending that it's going to eradicate autism is what people are doing when they call it a treatment and call it medically necessary. It isn't. Autistic people won't die without ABA. Not if they are receiving the correct supports to enable them to live as independently as possible.

I know a woman in the US who is "severely" autistic. She also has a movement disorder. She lives on her own, with staff who come into her home during the day. She communicates with an augmentative communication device - she types, it talks for her. She uses a wheelchair a lot of the time, because her movement disorder affects her ability to walk.

I know an autistic man in the US who has a full-time job (last I checked, at least) and who prefers typing to speaking. He used to talk all the time, but eventually found that the energy it took to form speech just wasn't worth it. He can express himself much better if he types it out.

I know autistic adults who have had "nervous breakdowns" in their twenties because they have been "pretending to be normal" for so long. It is incredibly stressful to try to be something you aren't (or at least to appear to be so).

I speak from extensive experience. I spent my entire life trying to be someone I wasn't. Then I got my ADHD diagnosis, and things changed. I'm ADHD. That explains a lot of my "quirks" and most of the things I have always had difficulty with in my life. The world isn't set up for me any more than it is for autistic people. My executive functioning problems get me labeled "lazy;" my distractability gets me labeled "ditzy;" my hyperfocus gets me labeled "obsessive." But put me in a situation where my "deficits" are accommodated and my gifts are channeled, and I am incredibly successful.

It's the same with autistic people. The challenge is finding the right situations and environments for them, particularly since autistic people have so many more sensory processing differences than most ADHDers.

By the way, I'm not picking on you. You just happened to ask about something I am incredibly passionate about. This is helping me put things into words. So thank you for the dialog. (And for what it's worth, I felt the exact same way you do, ten years ago when I started in the field.)

And now it's time for me to go do something else for a while.

Blogging on Sexuality

2009-02-09T08:53:00.004-07:00

On February 14, a bunch of people will be blogging about disability and sexuality. Please consider participating, and don't forget to sign up at Dave Hingsburger's blog.

First post about it

Second post about it

This post's icon was created by the author.

Well, that got a little heated... (on ABA)

2009-02-08T23:08:00.003-07:00

I did that meme on Facebook, the one where you list 25 random things about yourself. Here's one of my random things:

7. I was on Global TV news in February 2007 because I was lobbying against the bill that would make Applied Behaviour Analysis (ABA) a mandatory treatment for autistic children and had sent out press releases and written letters about it. (The bill wasn't actually about making ABA mandatory, but it would have funded the treatment and that would have wound up making it mandatory.)

I got a comment from my brother wondering what was wrong with ABA, since he doesn't know anything about it. I also got a couple of comments from a friend who currently works as an ABA therapist. I got a little long-winded and probably overdid things in my reply, which took four of the Facebook comment boxes. I probably got some of the science stuff wrong, but since I'm primarily speaking of my own experience, I'm happy to make changes where necessary. (And I did direct interested parties to Michelle's paper on ABA!) Here's what I wrote:

The bill would have said that ABA should be funded by Health Care, which is stupid because ABA isn't medically necessary (though FEAT would like people to believe it is) - it's an educational tool, and that is all it is. That's why the bill was a Bad Idea. (The one good thing is that it would have made funding for services mandatory across the lifespan of the individuals. The bad thing is that since there is so much pro-ABA propaganda out there, it would have wound up being the only option.)

As for what's wrong with ABA, I suggest those interested read Michelle Dawson's paper on the ethics thereof, which can be found here: http://www.sentex.net/~nexus23/naa_aba.html

Remember, I made my living doing ABA for several years. But I also have made sure to become educated about other things regarding autism, and while I think ABA is certainly a good teaching tool, the claims made about its effectiveness are dubious. There haven't been any proper studies done comparing specific "therapies," to my knowledge, and since ALL children learn and grow over the years, there is a fair amount of development being attributed to methods that may or may not have anything to do with said development.

Aside from that, I have a huge problem with the lack of respect for the children that is shown in these programs. Maybe I just got on bad teams, but there were a lot of them, and it was rampant in every single one. Good intentions there were, but they still didn't respect the children.

And what happens to the kids who don't "recover?" Or the ones who develop enough communication and social skills that they are able to express their understanding of what's gone on?

I'm a community aide for a teenager who had ABA for many, many years. Her parents decided to put an end to it at their last contract renewal, moving into community aide services instead of continuing behaviour therapy, because (this is my understanding, I may be incorrect) they have recognised that it's more important to help her learn to manage her life as she is instead of constantly reaching for "normalcy." She's not going to be "normal" - autism doesn't go away. You are born with an autistic brain, and that doesn't change. What changes is your ability to deal with the differences between how your brain functions and the way the world is set up.

One of my friends - autistic, adult, married, working - was in an ABA program for three months back in the 1970s. She has PTSD from it.

"But it's different now!?!" Sure, it's different. Kids in ABA programs still grow up knowing that something's "wrong" with them, that they just aren't good enough as they are.

There are much better ways to help kids learn. An integrated approach makes the most sense. Speech therapy for communication, including augmentative devices and/or sign language. Occupational Therapy for fine motor development and sensory processing differences. Did you know that forcing a child to use a pencil can cause PAIN if they have low muscle tone? An OT can diagnose this and provide excellent exercises to help combat the problem. But most ABA programs make poor use of these specialists.

Read the article. Michelle explains it all from the science angle.

Um, yeah. I think that's it for tonight. I have to get some sleep. I'll post updates as they happen.

United Stand for Autistics

2009-01-31T00:01:00.001-07:00

I belong to the Aspie Underground group on Facebook, and today is the United Stand for Autistics.

From the event page on Facebook:

What can you do to help?

Print out the campaign ads, which are available as the group photos, and post them in your general area.

If you are a college student, post them around your school.

The short version:

Scheduled to start a week or two after colleges resume sessions, this campaign consists of the following:

Raising awareness that anti-autism propaganda exists and is bad

Raising awareness of the search for a pre-natal test for autism and raising awareness that this is a problem

Encouraging people and companies to sever ties with organizations proliferating anti-autism propaganda and funding the eugenics threat

Note: This campaign does not take a stance on a cure in general.

Since I can't really do this offline, I thought I would do it online, here in my blog. So, here are the posters I liked the best:

Feel free to share. Hopefully, clicking on the images will take you to a larger image. If not, try going to the events page (linked above); they're all there in the photos section!

Punny, punny, punny...

2009-01-30T09:01:00.003-07:00

My boyfriend is an undiagnosed Aspie. He loves puns. He sent me the following this morning:

Veteran Pillsbury spokesman Pop N. Fresh died yesterday of a severe yeast infection. He was 71.
Known to friends as Brown-n-Serve, Fresh was an avid gardener and tennis player. Fresh was buried in one of the largest funeral ceremonies in recent years. Dozens of celebrities turned out including Mrs. Butterworth, the California Raisins, Hungry Jack, Aunt Jemima, Betty Crocker, the Hostess Twinkies, and Skippy. The graveside was piled high with flours as longtime friend Aunt Jemima delivered the eulogy, describing Fresh as a man who "never knew how much he was kneaded."
Fresh rose quickly in show business, but his later life was filled with many turnovers. He was not considered a very smart cookie, wasting much of his dough on half-baked schemes -- conned by those who buttered him up.
Still, even as a crusty old man, he was a roll model for millions. Fresh is survived by his second wife. They have two children and another bun in the oven. The funeral was held at 350 for about 20 minutes.

No, he didn't write it. But this is his kind of thing, to be sure. Feel free to share this with the autistic person in your life - he or she just might find it as entertaining as I did.

Oversight on the part of the City of Calgary leads to discrimination against individuals with disabilities.

2009-01-15T20:06:00.003-07:00

Winter hit Canada hard this year, and temperatures everywhere have been pretty cold. The snow storms just prior to Christmas had everyone in a tizzy, especially in places where it rarely snows, like Vancouver.

I live in Calgary, where we get snow every winter. However, we also get chinooks. A chinook is basically lots of warmth that melts all the snow. Typically, it will snow and get really really cold for a few days, then we'll get a chinook and the snow will all melt. A week later, it will snow again. Rinse and repeat. That is Calgary.

Calgary drivers are, arguably, not the greatest drivers in the world, especially when it comes to snow. I don't know what it is about this city, but every time it snows, most people become complete idiots, driving as though they've never seen snow before in their lives. (Yes, this happens every time it snows after a chinook.)

This year, we had more snow than usual. The city ploughed the main roads, which is all they are required to do due to policy. I think they also ploughed the transit routes, which is a Good Thing.

Well, we've got a chinook that's just started, and the snow in the residential streets has been packed by cars so that the street is at the same level as the sidewalks. That's pretty deep snow. Guess what happens when it starts to melt?

That's right: it gets soft and slushy.

Since some of my readers may not know what slush is, let me explain. You know those drinks with crushed ice and flavouring? 7-Eleven calls them Slurpees. Yeah, well, slush is like that, only it's snow and dirt and salt, and it's on the ground. (Don't eat it!)

Slushy snow is really hard to drive in, especially when it's this deep. If it's too soft, your car sinks right in, and it's difficult to get purchase enough that your vehicle is able to move. I'm lucky, in that I have a Pontiac Sunfire that actually has decent tires. It's pretty low to the ground, though, and it's front-wheel drive; I have to admit that I have gotten stuck once so far this winter.

Now that I've explained the road conditions, allow me to tell the story of my afternoon.

As my regular readers may recall, I spend two hours every Thursday afternoon with an autistic teenager. I function as a Community Aide, and we usually go out into the community, often to the library or the book store. I arrive at four o'clock, which is about the time she arrives home from school. She uses a Handi-Bus for this transportation, which, for those who do not know, is a service used to assist individuals with disabilities to get around the city. Several schools hire them to transport their students, and they are also able to be booked by individuals. The Handi-Bus system is meant for people who, for whatever reason, are unable to access the regular Calgary transit routes, and it provides door-to-door service. However, it is not a taxi service.

Today, I arrived on time for my shift and found three women (one of them the mother of the girl I work with) trying to help the Handi-Bus driver get un-stuck.

Yes, people, that's right, the bus my client takes to and from school every day was stuck in the snow in the middle of the cul de sac.

Of course, I parked in a nearby driveway and went to help. With the bus being rear-wheel drive, I got nicely sprayed by snow more than once throughout the event. And yes, we did eventually get the bus un-stuck, but it took the addition of two men and a lot of maneouvering to do it.

There are two reasons why the bus got stuck: first, the road had four to six inches of softened (melting) snow on it; second, the tires were not very good. Why is this a Bad Thing? Because there were still students with disabilities on the bus. It took half an hour to get it un-stuck. This is a disruption to those students' routines and schedules, and while the bus driver obviously had no control over getting stuck in the snow, the fact that it happened is entirely unacceptable.

My client's mother phoned Access Calgary, her alderman, and the city's infoline. I don't know the details of her conversations, but I know that she talked about the need for winter tires on the Handi-Bus, the need for the Handi-Bus routes to be ploughed, and the need for education in winter driving for Handi-Bus drivers. She had difficulty getting through to the alderman, so she wrote an e-mail. She also took pictures of the street in front of her house, including the ruts that the Handi-Bus dug in the snow.

This woman would never use the word 'discrimination' in her advocacy on this matter, but I will. The fact of the matter is that if the city ploughs the Calgary Transit bus routes, it needs to also plough the Handi-Bus routes. To refuse to do so is discrimination against people with disabilities. It denies these people the ability to get around the city - an ability that everyone else in the city has.

I honestly don't care if my own street never gets ploughed. I have a car, and it's doing quite well in the slush. I'm also just one block away from a ploughed road, so if I'm uncertain, I can drive over there to get out of the slush. And if my car is ever completely immobilized by the slush, there is a major bus route that goes along that ploughed road.

But this girl, and the many others like her who require the Handi-Bus in order to get around the city, needs her street ploughed. Her mother is going to drive her to school tomorrow morning, because she can't risk putting her on a bus that will probably get stuck somewhere.

I hope the City of Calgary chooses to rectify this situation.

A Friend Like Henry: solicited book review

2009-01-03T22:39:00.003-07:00

A Friend Like Henry, by Nuala Gardner, is billed on the cover as "The remarkable true story of an autistic boy and the dog that unlocked his world." While I definitely think that the book is worth reading, I don't think the dog unlocked the boy's world.

Nuala Gardner is the mother in this story, so we're reading her version of events. The book is, thankfully, neither overly emotional nor overly descriptive of things that aren't directly applicable to the story (both problems I've noted in parent-books over the years). At the end of the book, just before Nuala's Afterword and the book club discussion questions, Dale (the autistic boy) gives a few explanations for his behaviour.

Nuala is impressive in her ability to recognize that Dale was autistic from the beginning (would that more parents could see this in their children). The struggle she and her husband went through to get their son properly diagnosed is amazing, and I am honestly rather amazed that they stuck with it. In fact, they pushed throughout Dale's childhood to make sure he was in the right school placements and had all the opportunities they felt he should have for socializing, so that he could learn from his same-age peers.

This isn't really a story about a dog who unlocks an autistic boy's world, though. Rather, it's the story of a family that rallied around their autistic child and found ways to harness his interests so that he could learn and participate in activities outside of his home. Dale's perseverative interest in Thomas the Tank Engine got the whole family through a lot, including the death of Nuala's mother; meanwhile, Dale's interest in and ability to relate to the dog (Henry) allowed his parents to teach him hygeine and conversational skills, and even got him eating a varied diet.

Dale's little sister, Amy, was born after much trial and tribulation; she also is autistic, but regressed after a seemingly normal infancy. The siblings are very different in their autistic traits, something which Nuala stresses.

I had difficulty understanding how upset Nuala and her husband, James, were when faced with Amy's diagnosis, but I'm sure that's just my own "Theory of Mind" coming into play. I also had some difficulty with the emphasis Nuala and James placed on Dale stopping things like running in the garden; in Dale's section at the end of the book, he explains that there were some things that he did to feel calm and more himself, but that he stopped doing them to make his parents happy. This is a problem, in my mind, because there could be repercussions later on in Dale's life if he doesn't find other ways to feel calm.

Those two concerns aside, I applaud this book for its honesty and straightforward account of life with Dale. I very much enjoyed reading it and highly recommend it as an account of how a severely autistic child was helped to manage his life without any special programming besides a bit of speech therapy - all else was done by family members, friends, and teachers at school.

One small warning, though: Henry does eventually die (he's old by then), and that whole part of the tale is definitely tear-inducing.

This post's icon was created by the author.

2008-12-11T21:36:00.000-07:00

Another e-mail from said list owner in my inbox tonight. This time saying that I am "constantly sniping" at him, "after all that [he's] done for [me]."

I have not been constantly sniping at him.
He hasn't done anything for me, so far as I know; I wouldn't mind clarification on that point, but I won't be responding to his e-mails.

Apparently I am being nasty and arrogant, as well. Yes, I am capable of both, but I didn't think I was behaving like that in this instance. (Well, I mean, aside from my public posts about the whole incident. Which I'm only making because I think people should know not to join said group.)

The best is when he says he deserves respect because he's laboured so long in the field, so selflessly, and follows that up by asking what happened to my Christian upbringing. And his final point is that I should check out how I treated him over the years because it was inappropriate.

People who actually deserve respect don't need to request it.
I do my best to offer respect to all people, until they show me that they don't deserve it. This is because I am a Christian. I don't let other people's opinions sway me one way or another.
If I recall correctly, any time I "sniped" at this person, it was in direct response to his claims that all bad things in the world are due to feminism, and anyone who disagrees with him on anything is a feminist (in the bad sense). Since I am female, these claims were often directed towards me, especially when I was working as a behaviour therapist (the worst kind of feminist, apparently).

If he wants to actually discuss this, let it happen openly. I won't be e-mailing him; he can comment to my blog if he actually wants to "set the record straight."

It gets better!

2008-12-11T14:14:00.002-07:00

So, yesterday I wrote about how I got kicked off an autism discussion list that I've belonged to since 1999.

When it happened, I responded with two e-mails. The first pointed out that I'd had no warnings prior to the kick. The second pointed out that he's kicked me off the list for something I said ON A DIFFERENT LIST.

Today, I got an e-mail back that said that he might reinstate me if I apologize for all the times I snipped at him, since he was so gracious as to give me a platform to promote myself.

That caused me to do a double-take, as I have never, to my recollection, "promoted myself" on the autismlist, nor any other list I belong to, except as a possible informational resource. I might offer links to my web site or blog from time to time, but I never promote my services anywhere, and I certainly have never asked people for money in return for my thoughts and input into situations they are dealing with! (And aside from that, I only snipped in response to his under-handed pot-shots, so I don't know what he's talking about.)

Needless to say, I've told him I'm not coming back, and I told him he's not a nice person and that he is unreasonable. (To which he merely responded, "Good")

Ha, I got booted off an autism discussion list.

2008-12-10T16:32:00.004-07:00

I've belonged to the Yahoo! groups Autismlist since 1999 or something, so it's kind of strange to think that I'm no longer a member. What kills me is that all I did was agree with someone else (who, so far as I know, wasn't booted) that the list owner had said something that wasn't really "kosher" - i.e., asking an autistic man what his credentials are to be criticizing the owner's obsession with telepathy and facilitated communication (FC), bringing it up in every discussion as being "the best treatment" (which it isn't; it's a communication method, not a treatment method). I said that I've seen such tactics used in other discussions, and it seems that usually those who ask for people's credentials feel "caged" - they know they're going to lose the argument, so they try to cast aspersions on the people they're arguing with. And... I'm gone. No warnings or anything, just gone.

EDIT: I just realized that the discussion I got booted for was taking place on the AutAdvo Yahoo! group, not the Autismlist one. So the owner kicked me off HIS list for agreeing with someone ON ANOTHER LIST about the owner's "debate methods."

This is actually pretty funny to me, now; before it was just mildly amusing.

International Day of the Disabled Person

2008-12-03T16:58:00.002-07:00

I know, I know, it's been a long time. I'll be back regularly eventually, I'm sure. Life has just been crazybusy lately, that's all.

I'm really just posting today to make sure everyone knows that today is the International Day of the Disabled Person. One of my co-workers ran our agency's booth at a trade show for it today.

What do you think people should be doing on this day, if anything? Is such a day even necessary?

Tell us your thoughts.

This post's icon was created by the author.

Help! I've been "staffed"!

2008-09-18T20:54:00.003-06:00

A few people have written about the "staff mentality" and how it's all about power. Amanda has done an incredible job all by herself; you can read her posts on the topic by clicking her name at the beginning of this sentence.

Well, on Monday, I got "staffed."

And I didn't like it one bit.

Here's the story:

Monday, being the third Monday of the month, was our Autism/Asperger's Meetup Group. Can you believe, this group has been in existence for five years? DJ (the coordinator of the group, who was diagnosed with autism at the age of two and a half) and I were rather shocked to realise this.

Anyway, my boyfriend and I met at the restaurant for the group, as we always do. It was a smallish group this month; just DJ, T, and myself and my SO (plus T's mother and another gentleman I don't know, sitting across the room from us).

A new woman arrived. We greeted her. She told us her name (we'll call her L), and explained that she was staff from the employment organization (I forget the name) that another member was staff at. This other member is great and has always treated everyone at the group as an equal; she's there to help, and she really does want to get to know everyone as people - which is good, since only a few of our members are clients of the organization she works for.

L proceeded to ask DJ what the structure of the group was. DJ explained that we don't have a structure; we come, we eat, we chat, we go home. It's really just a social time, when we can be ourselves without fear of recrimination or strange looks or anything like that.

There was a bit of a pause in the evening as R arrived with his father; R sat across from DJ, and his dad went to sit with T's mom.

And then L sat down at the next table and proceeded to introduce herself to us again, following which she "suggested" that we tell her our names. In that voice parents use when their children have forgotten their manners.

After we'd all obediently told her who we were, DJ introduced L to the parental units. T's mother invited her to come sit with them. And she responded, "Oh, I thought I'd stay and see what they're going to talk about."

Now, until L arrived, we'd been having a lively conversation about animals and their behaviours. Mostly cats and dogs. After she said that, I didn't much want to talk about anything. She was intruding and treating us like we were ten years old, and every one of us was over eighteen.

Thankfully, L did end up sitting with the parents. And our little group of five ACs proceeded to have a great discussion about everything from video games to religion to food.

After the others had left, DJ and I (and my boyfriend) talked about how it had felt to be "staffed" like that. DJ was (understandably) offended that L seemed to be trying to take over the group. My boyfriend was annoyed with the way she had spoken to and about us. And I... am still processing things.

Because I wonder:

would she have behaved the way she did if she'd known that I have an ADHD diagnosis, not AS or ASD?
was I offended because "I shouldn't be treated like that because I'm not autistic" or because nobody should be treated like that?
have I ever treated anyone like that without realising it?

I don't question my motives in attending the group at all. I started going because I was already friends with DJ and had been working with children for several years; I wanted to get to know some autistic adults in 3D (as opposed to online). I kept going because I got to know several of the regulars quite well, and because I felt accepted as just myself. And I keep going because I have a lot of friends in the regulars (plus, I met my boyfriend there).

The good part is that today, when I was working with LM, I was much more aware of how I spoke to her. She's fourteen and has an autism diagnosis as well as something seizure-like and I think something else that impacts her cognition (I've never actually asked what her full diagnoses are). I try to always respect her and treat her as I would any other fourteen year old, but there are some things that she definitely isn't able to do at a fourteen year old level. So the question I was asking myself today was, "Am I really treating LM as she deserves to be treated, simply by virtue of the fact that she is a human being?" I think the answer is yes, but I'll continue to ask myself that question every week when I go over to her house.

Back to the story.

The next day, at work, I ate with the CEO of the organization (I changed jobs and have been working for the Alberta Council of Disability Services (ACDS) since the end of August), and I told her about my experience. She was appropriately aghast. We also talked about a few other things, but that is more a topic for another post, after I double-check about confidentiality and conflict of interest and the like.

Anyway, I think that next month, if L shows up again, I'll take a moment to talk to her about her attitude. And perhaps I'll share Phil Schwartz' article from autistics.org - "Identifying, Educating, and Empowering Allies." (All with DJ's go-ahead, of course!)

Someone needs to speak up, and I'll do it if nobody else can.

This post's icon was created by the LiveJournal user rivertammuvielu

Getting things done.

2008-08-15T09:29:00.004-06:00

I had coffee with a friend last night. She is also a writer, and we were discussing our current projects at one point.

This friend is currently working on a novel and five short films (22 minutes each).

I am working on the second draft of a YA novel, the first draft of a movie, and the first draft of a general fiction novel. I'm also working on a Mass, but that's music and we were talking about literary work, so I didn't mention it.

My friend expressed some wonder at how methodical I am. The fact that I "just do it" when it comes to my writing is, I guess, something that is difficult to understand. The thing is, I had to make a decision about my writing, and I need to get it organized so that I could keep track of my projects and be accountable to myself for getting things done. Since I am primarily writing for myself right now, things are fairly easy to keep straight, and I have no deadlines. This is both a blessing and a curse, because I'm really good at finding other things to occupy my time. (A fellow blogger, Douglas Cootey, recently wrote about this phenomenon.)

Since my friend was so awestruck at the thought of how methodical I am about my writing, I thought it might be beneficial for me to share my method. It could help others who are struggling with the kinds of problems I'm working through.

There are several components to my method:

Time Management
Document Management
Commitment

Time Management
I read a phenomenal book about this last year. It's called Time Management From the Inside Out, and it's by Julie Morgenstern. The principles in this book are simple and easy to put into practice, and it's all about finding a solution that works for you, rather than applying someone else's method to your life and expecting it to work. You really do need to read the book to get the full effect, but I'll summarize what I do here.

I categorize my time. I have five categories, and that's it.
- Janna Time - stuff that's just for me, like showers & baths, reading, watching TV, exercising, etc.
- People Time - stuff that involves other people, like meals with my boyfriend, coffee with friends, parties, church, etc.
- House Time - stuff that is all about maintaining the house, like cleaning, doing dishes, etc.
- Creating Time - stuff that has to do with writing, artwork, music, etc.
- Work Time - stuff like checking my e-mail, working with the few clients I still have, and (once I have one again) my job
I use my Palm (I have a Z22, nearly three years old) to schedule my time - I do a month at a time and then update weekly as well as daily, depending on what kinds of things might change. Each category is a different colour, so when I look at my day or week, I can see at a glance what's going on. I schedule my time at home as well as appointments and work away from home, and I set alarms for appointments that I have to be on time for. (Long experience tells me that the alarm has to be set for 90 minutes prior to the start of the appointment, as it takes about an hour for me to get out of the house and half an hour to get to my destination by car.) My regular at-home schedule is flexible (except for those appointments), so when things change it isn't a huge crisis for me. (I still don't like having my routines disrupted, but that's going to happen whether or not I want it to, so I have to deal.)
I use my Palm to keep a to-do list. This is something I can refer to when necessary, as a reminder of what I need to get done in a day. I may or may not follow it, but I try.
I keep my Palm synced with my desktop computer. This lets me check my to-do list on the big screen, change my schedule easily, and still carry things with me when I'm out and about.

Sample Daily Schedule

Time	Activity
7.00 a.m.	Get up, breakfast, toilette (shower, brush teeth, do hair, get dressed)
8.00 a.m.	Dishes, cleaning & tidying
9.00 a.m.	E-mail & blogs
9.15 a.m.	Writing
10.15 a.m.	Snack, cleaning & tidying
10.45 a.m.	E-mail & blogs
11.00 a.m.	Writing
12.00 p.m.	Walk/exercise
12.30 p.m.	Lunch, dishes
1.00 p.m.	E-mail & blogs
1.15 p.m.	Writing
2.15 p.m.	Baking, cleaning & tidying
2.45 p.m.	E-mail & blogs
3.00 p.m.	Writing
4.00 p.m.	Snack, cleaning & tidying
4.30 p.m.	E-mail & blogs
4.45 p.m.	Writing
5.45 p.m.	Make dinner, cleaning & tidying
6.30 p.m.	Eat dinner
7.30 p.m.	Dishes, make tomorrow's boxed lunches
8.30 p.m.	Time with my boyfriend, reading time
10.00 p.m.	Toilette (brush teeth, wash face, general get ready for bed time)
11.00 p.m.	Bedtime

Document Management
Different things work for different people, so I'll just share my solutions with you. Julie Morgenstern has also written a book called Organizing From the Inside Out, and it talks about how to decide what to keep and how to organize your papers. I'm a long way from actually having my stuff organized, but I've made notes and have many plans for all these things in my life. It's very similar to how you organize your time, using categories and prioritizing.

For me, document management is basically project management. I knew I needed to be able to keep track of what project I was working on and what stage of the writing process I was in for each project, so I created a spreadsheet using Google Docs. I have a different worksheet for each type of project (articles, long adult fiction, children's books, etc.) and each worksheet includes the same information:

Keyword (a word or phrase that identifies the project for me)
Fiction/Non-Fiction
Type of piece
Audience (child, teen, adult)
Start Date
# Edits
Finish Date
# Submissions
Final Title
Publisher
Notes

When I complete a stage in my active projects, I can go into this workbook and locate another project that I'm interested in working on. Since I have several pieces that I've started but not quite finished, I would like to polish them first. The best part of this system is that I can continue adding ideas to my spreadsheets, so I don't ever feel like I'm forgetting something.

I also use different programs for different projects or stages of writing:

For movies, I use CeltX, a free scriptwriting program that automatically formats your work as you go along. I can also use it for other types of scripts, from musicals to plays to comic books.
For first drafts and for short pieces, I use MS Word. OpenOffice works just as well, of course! Because I tend to write from the beginning to the end, without much of a detailed plot in mind, it's better for me to use something that doesn't require planning ahead. It's simple enough to save several versions of a short piece as I edit it, too.
For book-length manuscripts in their second draft (or later), I use yWriter, a free program that allows me to plot things out a little bit more. I can write scene summaries for the whole book, then go in and work on whatever's next without worrying about where it's going - it's all right there in the program!

Commitment
Finally, I had to make a commitment to myself that I would work on my writing at least once a day. (That's why it's on the sample schedule so many times.) When I sit down to write, I have to write one scene per active project - no ifs, ands, or buts allowed. This means that I actually accomplish something every day that I do any writing, and that increases the likelihood that I'll do it again the next day (or even later on that same day).

I only have four active projects at the moment, including the Mass, and they're all in different stages.

The Social Habits of Dolphins is my YA novel. I'm currently working on the second draft. I had to completely restructure the book, and there's a fair amount of research I have to do before I can call this draft finished. Next I'll have to find a couple of people to read it and make comments so that I have notes to work from for my third draft.
Vertical Reality is my movie. It's based on a concept album by one of my favourite Christian musicians, Eric Champion. I'm working on the first draft, which means that I'm basically just trying to get the whole basic idea down on paper. Then I'll pass it off to someone who understands scripts (like, say, that friend I had coffee with last night) to get notes and thoughts on it.
Cut of Finer Cloth: O Come All Ye Faithful is my general fiction novel. I'm working on the first draft right now, and all I'm working from is a concept. It's fun, but difficult.
A Pentecost Mass & Liturgy is about half done. I'm working on the music now, and once I have the basics down I need to consult with an organist so I can write the organ parts properly. (I'm not even a pretend pianist.)

I want to do at least four drafts of a piece before I consider it finished and begin shopping it around. So none of these are anywhere near being done, but at least they're being worked on regularly!

When I finish the current draft of any piece, I can go into my workbook and choose another project to elevate to "active" status. I'll then work on the current draft for that. Depending on how long it takes to finish the drafts and get comments from readers, I could end up with far more than four active projects on my plate. But this arrangement allows me to focus just a little bit at a time while making real progress in my work.

As we know, distraction and executive dysfunction are two very big issues for me. This method of tackling my writing is how I'm keeping myself on track and sidestepping the executive functioning problems that plague my days. I'm attempting to apply the method to other parts of my life, as well; it doesn't always translate perfectly, but I'm doing my best. And there is progress to be found, so I guess it's working!

The Experiment.

2008-08-03T23:03:00.003-06:00

Well, I'm doing it again.

Waaaaay back in 2002, I attempted the GF/CF Diet. I wanted to see what it was like for a non-autistic person, as well as how difficult and how costly it really was.

I didn't do very well at keeping up with it, but I did keep data.

So I'm doing it again, only this time with a well-thought-out plan for the progression of the experiment and the data I'll be keeping.

I probably won't talk much about The Experiment on this blog, except incidentally, but I've converted my Yahoo! GeoCities web site into the home of all my data and other information. Today was my first day, and I've put up the log for today already. You can also check out the data from my 2002 attempt.

The main page of the site explains exactly what I'm going to be doing, and how, and it lists what I'll be keeping track of as I go along.

This isn't a great study, as it's a single design case study. But I've given a lot of details about what I'm doing, and there will be plenty of data available. Hopefully this will make it easier for others to attempt a duplication, should they be so inclined.

And that's what's happening in my world right now - oh, except that we're going to a wedding at 8.00 a.m. on Friday morning, in BC. Which means we're leaving Wednesday after work, driving all night so we can catch the first ferry to the island on Thursday morning, so we'll be there on time for the wedding. Don't ask me, it's my boyfriend's step-brother. (The wedding reception should make things fun, what with my being in the no dairy stage...)

A small oversight.

2008-07-22T15:08:00.004-06:00

I have finally achieved the unachievable: I just passed the written test for my Alberta Class 4 driver's license. This gives me legal permission to take the road test for said license. I also got my physical done, which means that once I pass the road test I will be able to get the license right away.

I need to get my Class 4 for my job. The Alberta government requires all people who are paid for driving other people to have this level of driver's license. Regardless of how silly I think it is, it has suddenly become a necessity for me to get the same license as EMTs, taxi drivers, and school bus drivers (maximum of 24 passengers) need. (It has not been necessary before this because I didn't drive my Preschool Unit Funding clients when I was working for an agency previously, and because I typically don't charge private clients for driving them places.)

The written test itself was not really very difficult. Had it been administered on paper, I'm sure I would have passed the test on the first try. Unfortunately, it was given via computer, and today was my third attempt. Thank goodness I passed!

I remember, "back in the day", when I got my learner's permit for my Class 5 license, the testing was done on paper. The Alberta government has now updated things so much that the paper test is no longer available. I have been hoping to locate such a thing since I failed the computer version the first time (last Monday).

The problems with the computerized testing, as I see it, are:

the testee is only able to see one question at a time;
answers cannot be changed, as incorrect ones are noted as the test is taken; and
if the testee skips a question, it is simply tacked on to the end of the exam and all skipped questions are repeated at the end in the order they were originally presented.

Benefits of paper testing for those who are able to demonstrate need:

the testee is able to see all the questions at once and decide which order to answer them in;
if the testee suddenly realises that there is an incorrect response, it can be changed; and
if the testee skips a question, it can be attempted later on, when the testee has had time to think it over for as long as necessary.

Today, when I went into a different registry and asked about it, I was informed that nobody is even allowed to give the paper version anymore: it's all done by computer. I was, naturally, apprehensive about this situation, and I shared my concerns with the agent as we got me signed up to do the test.

"I was really upset when they did this," she said. "I mean, what about older people who don't know how to use computers? Yeah, it's just point & click, but still!"

I agreed. "The paper test needs to be available as an option for people with learning disabilities. I have ADHD, and the computer version just isn't a good fit for that."

Well, maybe that's not exactly the conversation we had, but it is the gist of it.

I plan to get this changed. I'm not totally sure how I'm going to do that yet, but I will be doing some research over the next little while. Keeping the option of paper testing available for the disabled and elderly isn't offering an "easy way out", it's leveling the playing field. One's ability to drive safely and follow the rules of the road has little to do with one's ability to use a computer or take a test in a specific manner.

(And, yes, I did pass on the third try, but the point is that it shouldn't have taken me that many attempts. I am a smart person, I have been driving for nigh on 16 years, and I did study for this test.)

"Can you help a community without really being a part of it?"

2008-07-06T13:26:00.004-06:00

The quote that forms the title of this post is from a documentary about the making of the film The Second Chance. The movie, which stars Michael W. Smith and was directed by Steve Taylor (both big names in the Christian music world), is really about the social inequalities (class, race, etc.) that still exist, and what our response should be. It tackles the issues from within a faith paradigm, but makes its point without shoving Christianity down the viewers' throats. I recommend this movie, if you can find it to rent anywhere, and I definitely recommend checking out the special features on the DVD.

The quote caught my attention, as many such things do, because it makes so much sense. The woman who said it was a former resident of the projects, who got herself out. She talks about how money isn't what's needed, though it helps - people are needed, to teach and to help those struggling against society's strictures reach their full potential.

The movie itself is about a man (Smith) who is the son of the senior pastor at a large mega-church. He's on the fast-track to becoming the next senior pastor there, used to play piano for Tina Turner, etc. This church has a small mission church (actually founded before the large one) in the projects, called "The Second Chance Community Church". Smith's character makes the board at the big church upset, so they "sentence" him to community service at the inner-city church. He works in tandem with the pastor there, and over time he begins to learn that the answer to the problems of the people there is not to throw money at them, but to actually take the time to get to know them, to learn who they are, to really live with them and share their lives.

So I began to wonder about the autism community (it always comes back to this for me). Regardless of your position on any of the hot topics of the moment, mightn't it do some good to really try to understand where everyone is coming from? Obviously those of us without children cannot really experience parenthood any more than it is possible for a white person to really experience what it is like to be black, or a hearing person to really experience what it's like to be deaf, but there is a lot to be learned in the attempt. Same goes for non-autistic people trying to understand what it's like to be autistic.

Instead of this open-minded approach to debate and discussion, I often see closed-minded pushing of agendas. This sort of thing benefits no-one. I promise.

Somehow, the autism community needs to find a way to become one community. Those within a community don't have to agree on everything any more than individuals in a family have to get along all the time. But dialog needs to be real dialog, not meaningless avalanches of words that try to bury understanding and open-mindedness.

So, I guess what I'm saying is that I'd rather serve and listen and do my best to help where I can than be involved in arguments that probably won't help anything in the end.

What about you? (And do you even understand what I'm getting at, since I'm not totally sure how coherent I'm being right now.)

All In the Serve - Michael W. Smith

Never gave you nothin’
People couldn’t explain
Never gave you nothin’
Without something to gain
Never could slow down, no
To study your face, but now
I want to know your name

Hold my feet to the fire
Till I’m making a sweat
Till I never forget
Your calling keeps me up at night
Give me enough
Here it’s all in the serve

Locked in the dark place
I kept driving past it
Better to be safe
Than what you’re about
Give me another chance
To go where you go now
I’m here to walk it out
I’m here to walk it out
I’m here to walk it out

It’s all in the serve
It’s all in the serve
Here it’s all in the serve

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Why Vaccines Are Important.

2008-07-02T23:52:00.005-06:00

Okay, so Ramesh Ferris looks nothing like Mal Reynolds. For one thing, Ramesh has more muscle in his upper body. For another, Ramesh is of Indian descent (as in, he was born in India). But he's still a "Big Damn Hero" in my mind.

Ramesh is a polio survivor. He was adopted from an orphanage in India by the current Anglican bishop of the Diocese of Algoma, Ron Ferris, and has lived nearly all of his life in Canada. Because of this, he has had access to all kinds of health care and rehabilitation that he would not have had in India.

Ramesh can walk because of crutches and braces, but he only has these things because he was lucky enough to be adopted into a Canadian family. Six years ago, he visited India and saw first-hand what his life would have been like without that intervention.

Now, Ramesh is using a hand-cycle to cross Canada - from Victoria, British Columbia right through to Cape Spear, Newfoundland. I met him on Canada Day (July 1), as I was attending the celebrations in Thunder Bay, Ontario, with my parents. (I am currently on vacation, house-sitting and cat-sitting for my parents as they visit my youngest brother and his wife in Toronto.)

I've provided some links below so you can explore things on your own, but I wanted to give a nice preamble and leave you with some facts about polio to keep your brain active for the next little while. All of these points can be found on the official web site for Cycle to Walk.

Polio (poliomyelitis, or poliovirus) – source: http://www.rotary.org/
Enters through mouth; multiplies in tonsils and lymph nodes. Proceeds to
gastrointestinal tract.

Virus multiplies in intestines and spreads via feces (diaper changes, contaminated water, poor hygiene, etc.).

Can cause paralysis within hours and attacks motor neurons in the brain stem, affecting breathing.

More than 10 million children will be paralyzed in the next 40 years if the world fails to capitalize on its US$4 billion global investment in eradication.

Historically, polio has been the world’s greatest cause of disability.

A single dose of vaccine can cost as little as US60¢.

Polio in the Developed World
Polio is literally an airplane ride away.

Like people in other developed countries where national immunization programs have protected generations from the devastations of polio since the introduction of the Salk (1954) and Sabin (1961) vaccines, Canadians have come to feel so safe from the disease, that many now consider it unnecessary to immunize their children.

In today’s age of frequent, international travel, all non-immunized people are at risk no matter where they live. Polio is literally an airplane ride away.

In July 2007, a positive case of polio was confirmed in Australia, as was the case in 2006 in Singapore. The GPEI News also reported the isolation of wild poliovirus (wpv) in the sewer water of the city of Geneva in August 2007. It is “due to high vaccination coverage and good sanitation” that detection of the virus was not considered to “represent a significant risk of outbreak.”

Polio in Canada
If asked, most Canadians would say that polio is “solved.” So, educating Canadians about polio, the vaccines and advocating continued immunization is absolutely necessary.

Polio is not solved.

In Canada, the immunization rate against polio is at 89%; leaving nearly four million Canadians (11%) vulnerable to this viral infection. According to WHO calculations, the rate of immunization is presently low enough to put Canada at risk for at least localized outbreaks.

“As long as a single child remains infected with the poliovirus, children in all countries are at risk of contracting the disease. The poliovirus can easily be imported into a polio-free country and can spread rapidly amongst immunized populations. Between 2003 and 2005, 25 previously polio-free countries were reinfected due to importations.” - (WHO)

Canadians should be aware that in addition to the threat of new polio infections, more than 10 million polio survivors worldwide are living without access to the rehabilitative support that would enable them to overcome the devastating physical effects of polio.

Polio in the Developing World
Despite the great success of the Global Polio Eradication Initiative (GPEI), spearheaded by Rotary International (R.I.), the World Health Organization (WHO), the U.S. Centre for Disease Control and Prevention (CDC) and UNICEF, in reducing the number of new cases by 99% since 1988, the hard fact is today, polio is still very present in four countries; India, Pakistan, Afghanistan and Nigeria.

Polio remains endemic in four countries:

Nigeria: 264 new infections
India: 590 new infections
Pakistan: 30 new infections
Afghanistan: 13 new infections
Polio has re-infected the Democratic Republic of the Congo, with 41 new cases in 2007. A total of 95 instances of polio infection occurred in non-endemic countries in 2007.

A Culture of Crawlers
They are doomed to living on the ground, to getting about from place to place by crawling, using sandals over their hands to protect them and pieces of rubber tires strapped over their knees... These polio survivors without rehabilitative support are called ‘Crawlers’. They are so many as to constitute a ‘Culture of Crawlers.’

They need our help.
Year-to-date infections in 2007 Source: http://www.polioeradication.org/

Facebook

Official Web Site

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Canadian Stuff

2008-06-25T07:26:00.003-06:00

In my e-mail this morning, there was an update from the FEAT/AB message board with a subject of "SAF". (I don't often post to that board, but I like to keep tabs on it so getting it in e-mail is useful.) I followed the link and read about an organization in Edmonton called the Self Advocacy Federation. It sounds pretty cool. I'd link you to their web site, but they don't seem to have one. Basically, it seems to be a group of people with various developmental disabilities who give presentations about their lives. It sounds like it may be similar to the Disability Action Hall here in Calgary, though I don't know much about either group. I'm hoping to attend the next DAH meeting (in July).

As I was attempting to research the SAF, I came across a very cool web site, called "What Sorts of People Should There Be?" I think this site - and its accompanying blog (of which Kristina and Amanda are already aware) - are very interesting, and I can't wait to explore it all in the coming days.

It's very exciting to discover things like this when I'm not really looking for them on a regular basis. Hopefully I'll locate more as time goes on!

The importance of being honest.

2008-06-20T16:29:00.003-06:00

I'm sure some of my readers know of the play and movie, The Importance of Being Earnest. This isn't about that. Of course, I haven't seen it, so if I'm wrong I hope someone will correct me. (I just read the synopsis on IMDB, so I'm pretty sure I'm right.)

Anyway.

I want to write about the importance of being honest. I'm not talking about "honesty is the best policy" or "Thou shalt not lie" or anything like that; I'm talking about being honest with the people who are working with your children. Obviously this is important whether your child is autistic or not, but it becomes vital when you are dealing with professionals who are attempting to work with you and your child in order to improve your lives and help your child learn skills that he will need in the future.

There is an important part to this type of honesty. You need to be honest about your expectations for your child. You need to be honest about your expectations of the staff working with your child. And you need to be honest about how much effort you are willing to put in. On top of all of that, if any of the staff does something you are uncomfortable with, or if anyone falls down on the job, it is vital that you speak up immediately. You can't expect things to get better if you haven't told anyone you're displeased.

Lack of honesty causes a lot of stress, across the board. Parents become stressed because the staff aren't living up to expectations. Children are stressed because the parents are stressed, and because programming isn't being carried over from session to home life (lack of consistency). Staff aren't typically stressed if the parents are exceptional actors, but all the stress ends up landing squarely in their court when the parents finally reach the end of their rope and start complaining.

So, really, seriously, don't worry about hurt feelings. Understand that, except for a fairly obvious few, most of us are in the field, working with these kids, because we love the kids and want to do right by them - and by you. Recognise the fact that we can't fix things if we don't know they're broken (or becoming broken). Be blunt, don't try to be "tactful" or whitewash things. Just tell the truth, the whole truth, and nothing but the truth.

It's way easier on everyone.

Honest.

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Wait, families with autism? (TACA and vaccines)

2008-06-04T17:31:00.003-06:00

I wasn't actually aware that it was possible to be a "family with autism", but that's what Talk About Curing Autism (TACA) uses as its tag line (families with autism helping families with autism).

TACA had a rally today about vaccines, where Jim Carrey and Jenny McCarthy were the celebrities in attendance (well, the ones who are highlighted on the main page of the site). Not anti-vaccines, but "let's slow down here, don't give so many all at once or so close together!" Which is kind of cool, really, and is a view I have held for many years. (Not because I think vaccines cause autism, but because I don't see how it's a good idea to inflict a small, developing body with so much outside material all at once.)

I found out about the rally while I was driving home from work this afternoon. I was listening to Shine FM, the local Christian radio station, as I do every day. The usual Drive show host was away today, so Johnny Mac was hosting in her place. Johnny's an interesting host. His jokes are pretty well all groaners, but I enjoy them anyway (good thing; my boyfriend is really punny), and he's often proven himself to be highly intelligent - which he did again today, to my pleasant surprise. (By which I mean, I was apprehensive when he said we were going to talk about vaccines, but he was quite insightful and respectful and had actually researched the topic in a sane manner before deciding to talk about it.)

Johnny outlined the point of the rally and then asked people to call in with their thoughts. What's amazing to me is that he only shared two calls, and both of them were quite good (well, one was mine, so I guess I shouldn't boast, but whatever).

The first caller was an employee of the Calgary Health Region, and she noted how important vaccines are. She pointed out that as fewer children are vaccinated, the risk of epidemics of diseases we are trying to eradicate (measles, mumps, rubella, diptheria, scarlet fever, etc.) increases for everyone. Anyone in Calgary who wants more information about vaccinations can call 403.943.LINK

As for myself, I made a few points. First, I noted that people really need to be educated about what side effects could occur. Second, I noted that vaccines are not a cause of autism, and even if they were, I'd rather have a live autistic child than a dead child. Third, I pointed out that it's possible to get combined vaccines separated out and split over several months.

In our conversation, one of the things Johnny and I talked about - this wasn't aired - was that there is no proven link between autism and vaccines. I took the opportunity to state that there are people who believe vaccines cause autism, even though it's been proven otherwise several times over. He seemed to appreciate that.

I'm posting this and then sending Johnny the link to my blog, so hi Johnny! Thanks for taking my call and doing some responsible journalism on this topic - even if it was just a chance for people to call in and get on their soapboxes!

Bias, Respect, and other thoughts about the online autism community.

2008-05-10T10:01:00.003-06:00

We're talking about respect on a list I belong to: how to teach people about treating others with respect; how to disagree with one another respectfully; etc. This discussion has been quite interesting, and has come around to the topic of bias, and how everyone has a bias, whether they admit it or not.

When we interact with people, our biases come out of hiding. We may not be aware of what's going on, but it does become fairly obvious. And not all biases are necessarily "bad"; caution when interacting with strangers is, in my opinion, a good idea.

However, bias can get in the way of respect, and that is definitely a problem.

I try to operate on the assumption that all people are worthy of my respect, regardless of who they are, what they've done, what they haven't done, etc. I do my best to treat everyone with respect, giving them the benefit of the doubt when they behave in a manner I dislike, and offering my opinions without judging them or their opinions.

It's not easy. People can be very obviously closed to hearing what I have to say. They "put words in my mouth" (extrapolating meaning that was not there). And it becomes incredibly difficult to respond to such behaviour with respect, since disrespect engenders disrespect.

Unfortunately, I do have a bias against people who are intolerant of others' differences. This bias makes it incredibly difficult for me to treat such people with respect. As a result, I try to distance myself from such people and discussions about these kinds of issues.

Of course, this coping mechanism isn't exactly productive for someone who wants to be an advocate for the rights of those with disabilities.

And so I have to work to participate in the kinds of discussions that make it difficult for me to behave respectfully towards those involved. I'm hoping that I'll be able to help create change this way - even if it is a small change.

True objectivity does not exist. Even in the world of science, we have experimenter bias, writer bias, and reader bias. (Never mind the biases of the editors of the publications the papers are being published in!) It is very important that we all acknowledge the existence of such biases in our lives, and do our best to look past them to get to the real "bottom of things".

For my part, I am going to attempt to focus more on that whole "respect" thing. We have to treat each other with respect, at all times. No questioning diagnoses, no insults - just honest questions and responses when we're discussing these issues that we all care so much about.

Yes, this is difficult. Some autistic people have difficulty recognising the validity of others' opinions. (A lot of neurotypicals share this problem.) A lot of us in the community are blunt, and bluntness is often read as being rude in the world. However, true rudeness has a different quality to it from plain old bluntness, and it's important also to recognise that.

At the same time, having a diagnosis (of any kind) doesn't excuse us from being polite and respectful. It is not impossible for us to learn new skills, just difficult, and while it may be difficult to see the point in learning these particular skills, it will - in the end - enable us to be taken more seriously in the world at large. The general public will respect us and our message much more, and they will really begin to listen.

And, in the end, isn't that what we need?

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One of those days...

2008-05-07T17:02:00.003-06:00

I started work this morning by engaging in a lovely battle of wills with my 3yo client.

I put out his Picture Communication Symbols (PCS) (he is currently working on discriminating between "open box" - the box of toys I bring with me - and "Cheerios" - which is supposed to be out at all times) on the sheet we have on the wall by the kitchen, as always.

He went over, pulled down the "open box" PCS, and immediately started tapping his teeth with it and chewing on it.

I took it away and stuck it back on the wall.

He retrieved it and went back to mouthing the PCS.

This continued for several minutes. He became very frustrated, yelled at me (if he could speak words yet, he'd have been swearing at me, I'm sure), and at one point collapsed on the floor and attempted to bite my heel.

I tried to replace the PCS with a "stim strip" I had in my binder, but he was having none of that. His mother tried giving him some Cheerios, but they wound up on the floor.

Eventually, I picked him up and deposited him on the couch with a piece of ginormous Lego, which he picked up and used for tapping his teeth. Once he was calm, I pulled out my new bubbles and we had a nice quiet moment.

*****

This afternoon, the fun started when my 4yo client decided he should take all the toilet paper off the roll instead of actually using the toilet when it was time to go to the bathroom. (This is something he is capable of doing on his own, when reminded to go, and there is a picture schedule in the bathroom to remind him what to do.) I walked him through everything and didn't let him do any steps on his own, which resulted in a crying child.

And then the SLP (speech therapist) arrived, and we were attempting to go over the IPP since the update is in a couple of weeks, and the boys decided they should fight constantly. Basically, my client never managed to get down to a solid state of calm, and so every time his 2yo brother did something "wrong" there was a meltdown.

We ended the session early.

*****

All of this while I have a head cold. It's so much fun working with kidlets sometimes!

So, yeah. I'm about to go try to sort out the back entry of my house. We've been living here for nearly three weeks or something, and it's still mostly boxes. I'd like to be able to put the guinea pig cage in its proper place by the end of the day, since he's currently stuck in a room I don't visit very often, and he's a rather social little guy.

And, of course, you all know that I really do love my job and the kids I work with. I wouldn't give this up again unless I absolutely had to!

Awareness, Acceptance, Accommodations, Advocacy, Awful, Awesome... this post brought to you by the letter "A".

2008-05-06T21:43:00.000-06:00

I'm pretty well tired of all these "A" words. Including my own diagnosis and that of the kids I work with.

Okay, not really. But I was reading some comments from people in an ADHD community I belong to, and a lot of those comments were incredibly negative. Things about how ADHD isn't a good thing, it doesn't help them be creative - it keeps them from accomplishing anything. And posts in autism communities that are along the same lines.

Yes, these are posts from people with the diagnosis who dislike something that is so much a part of who they are.

And you know, it makes me sad to know that these people don't like themselves, aren't happy with themselves as they are.

It's taken me a long time to figure out where I stand on all of this, especially in relation to myself. I've always talked the talk, but I admit that I haven't always really walked the walk.

Granted, that's been difficult due to my depression, but still.

Here is something I wrote recently - a comment in said ADHD community:

I was diagnosed as an adult - 3 years ago, in fact. And the diagnosis was the equivalent of relief for me. Finally I had a name for the things I'd always had so much trouble with. But at the same time, I didn't want to tell people about my diagnosis because of the stigma. (I'm over that now.)

ADHD is definitely a part of who I am. It's not a bad thing, it's not a good thing, it just is.

There are definite drawbacks to ADHD. I have trouble concentrating, I have difficulty with social stuff, and the executive dysfunction is a pain in the butt. At the same time, the positives are my ability to have several projects on the go at once (I'm learning to actually complete things), my ability to laugh at myself when I do or say something a little "off", and the hyperfocus that lets me write an entire first draft of a short story or article in an hour or less. (I'm a writer.)

I think that all people are creative, whether they are ADHD or not - it's just that highly creative people tend to be disorganized (doesn't mean they're ADHD), and so you find a greater proportion of ADHDers in amongst those disorganized highly creative people than in the rest of the population. That's my opinion, anyway, given that my best friend is highly creative (she's an artist) and somewhat disorganized, but not ADHD.

The same kind of thing goes with intelligence. I think that you are simply likely to find a higher percentage of people with ADHD (really, any learning disability) in amongst those who are highly intelligent than you will find in the general population.

I'm old. Well, I'm not really all that old - I'll be 32 in September - but I'm definitely far too old to be worrying about what's wrong with me. I know what's "wrong" with me: I have moderate clinical depression and severe inattentive ADHD. And I always have had some type of depression, and I always have had ADHD.

There's no point in grousing about it, no point in feeling sorry for myself. When I do get depressed, it's not because I have ADHD, or because I have depression, but because of situations or hormones that are making it hard for my antidepressant to do its job.

I don't have a lot of patience for people who give up. Probably because I have always refused to do so. Every time I get knocked down, I pull myself up by my bootstraps and keep on going. Sure, my personal journals are full of world-ending statements of how I'm giving up, but that's all so much hot air. I keep plugging away - because I know what I'm capable of, I know what I want, and I'm willing to work to get it. I don't expect medication to instantly make my life better, I don't expect my life to be perfect because of it, and I don't expect people to cut me all kinds of slack because I have a couple of diagnoses. I do expect medication to help me make my life better over time, I do expect my life to improve because I am working towards that end, and I do expect people to be understanding when I hit a snag.

Because that's all the drawbacks are - snags. ADHD isn't something I'm trying to overcome, because it's part of me. To overcome ADHD would be to overcome myself, which means I would cease to exist as myself. (How existential!) When I hit a snag, I work to untangle myself, I find strategies that might help keep things smooth next time the same sort of thing comes up, and I keep on going - because that's all I really can do.

My life isn't easy. It's never been easy. Sure, we could play the comparison game for hours - I was never dirt-poor, I always had fairly nice things, my parents weren't drunkards or druggies, I was never homeless or drunk or high, etc. But I've had other problems, faced various monsters and come out on top, and I have done most of this without knowing why everything was so difficult for me.

And then we have the other side of the coin - the people who talk about how ADHD or autism makes them better than the "normies". Again, I can't stand this, either. And the sad part is, it's not just those who have the diagnoses spouting this stuff - just like the "horrific suffering" people, there are neurotypical (or pseudo-neurotypical) people out there who like to believe that ADHD or autism is a wonderful thing.

Some of the things I've heard along these lines have to do with being the next step on the evolutionary ladder, everyone with said diagnoses being genii, etc. etc. etc.

Again - ADHD is just a part of me; it doesn't make me any better or any worse than anyone else, it just makes me different.

There are good things to having a variable attention span, believe it or not. I can hyperfocus for hours at a time and get something done (well) in less time than someone else might take. I can jump from one task to another without a lot of hassle. I'm interested in dang near everything, which means that I know a little bit about most things in the world. (Funny how that works!)

And then there are the other things that might be due to ADHD and might not, but since they're who I am, I figure I may as well not bother quibbling over the source. Things like my creativity, my fascination with words, my love of guinea pigs, my ability to reach the "unreachable" (autistic children), my musical talent, etc.

But it's all just part of who I am. I'm quirky, like everyone is.

And while ADHD is definitely a part of who I am, I think that really only one word really describes me properly: Janna.

This post's icon was created by its author.

Emergence: Labeled Autistic - very short book review

2008-04-10T15:40:00.005-06:00

There's been a lot going on lately, and we're moving house this weekend (yes, I know, again). One of my guinea pigs died on Sunday, and even though I'm taking my Cipralex like a good girl, the depression with regards to that just isn't going away. So when I woke up this morning and there was a foot of snow on the ground (and on my car) and the radio traffic reports were saying that hills and ramps were really slippery (and Calgary is all hills), I decided I should call in absent to work, take an unpaid day off, and get myself that desperately needed day to myself.

Well, I haven't been totally unproductive. I wrote part of my Script Frenzy movie (it's like NaNoWriMo, only for a 100-page script), edited/rewrote two more chapters of my 2006 NaNo novel, put away the clean dishes, and sorted out the clean laundry. In a little while, I'll be doing some market research - basically, "where can I send this article/story, and do I have any ideas for this place since it sounds good?"

I also took a bath and finally finished reading Emergence: Labeled Autistic, by Temple Grandin.

Temple is, of course, one of the more famous autistic adults in the world. Bernard Rimland wrote the Foreword and calls her a recovered autistic; nowhere in the book do I see that possibility.

The book is very well-written, and I love the visual language Temple uses throughout. I am partially a visual thinker myself, and I have always appreciated such things in writing. (Not long passages of description, mind you, but those turns of phrase that immediately evoke an image so that you are able to see the scene in your mind's eye.)

In her last chapter, Temple talks about various points that parents and professionals should think about when they encounter an autistic person. It is very good in its broad scope, and recognises a lot of the different approaches we might take in helping these people learn to navigate the world.

I would say that my only problem with this book is with the times Temple steps out of the narration to pontificate on her own theories of autism and autism treatment, education, thought, etc. As an autobiography, it is very good. However, the theories she presents don't quite sit right with me. It would take some research on my part to learn if any of them are actually based in psychological theory, as - like Temple - I have only an undergraduate degree in psychology.

All in all - I do recommend the book. Temple is a good example of the possibilities that exist for autistic people of all stripes. It is so important to find and nurture that one area of obsession - that one thing that can always culture perseveration, no matter what - and deal with any anxiety and sensory problems, while encouraging effective communication.

This post's icon was created by the author.

Implication by Association?

2008-04-05T12:00:00.003-06:00

Everyone else is blogging about this, so I figured I might as well get in on the act.

Basically, it would appear that unreasonable demands are being made of Kathleen Seidel (pictured here with Amanda Baggs, at AutCom in Edmonton 2006), in the form of a subpoena to produce an incredible array of records for a court case with which she has little to no connection save for having written about it a couple of times, largely to explain why it's a foolish waste of time.

Or, at least, that's the impression I got. I'm not one who follows this kind of thing closely (as I have probably noted in the past), and I don't pretend to understand either law or science all that well, but I've read most of the posts about this particular issue and I can say, with a fair amount of certainty, that the subpoena is even more pointless than the case to which it pertains.

What is particularly interesting is point #5 in the subpoena, which asks for all records and correspondence Kathleen has had with people whose blogs are listed in her blogroll. In fact, the entire blogroll is reproduced in the subpoena. Including my own blog - this one you are reading right now.

I actually didn't know that Kathleen had linked here, and I'm rather honoured to learn of my inclusion in her blogroll, especially since I'm not really about "facts" and "science" but "humanity" and "emotions". The subpoena, I guess, is attempting to implicate those of us in her blogroll as aiding and abetting Kathleen in her blogging? This makes little to no sense to me. (And I do wonder if the subpoena will be able to have much impact on me anyway, given my Canadian citizenship.)

There are two main reasons I decided to post about this, though: online handles and religion.

Ralph at Homo Autistic makes a good point when he says, "I don't know if the transcript of legal cases such as "Sykes v. Bayer" are public domain but the intention (or part of it) seems to be to *out* everyone, including or maybe especially those who use nicks or pseudonyms." Now, like Ralph, I use my real name for most things online, and where I use a pseudonym to log in I am just as likely to use my real name as a signature to my posts. I've been "threatened" (unrelated to autism advocacy) with exposure online in the past, and to be perfectly honest it did not intimidate me because I've been a public figure for years; if you google my full name, you will see just what kinds of things I'm about and have been doing online over the years. So such a possibility is not exactly a concern for me, though it may well be for other people on Kathleen's blogroll.

As for religion, I find the subpoena to be concerning because of its specific mention of Islam ("religious groups (Muslim or otherwise), or individuals with religious affiliations,”). The Rev'd Lisa Sykes is a United Methodist reverend. She and her husband are seeking retribution from the drug company Bayer for reportedly causing their son's autism. Or, at least, that's what I gather.

At the same time as this trial is going on, the couple are using untested, dangerous medical interventions with their child, in the hopes that they might cure him. Again, that's what I have figured out from my reading.

I am a Christian - an Anglican, to be specific - and I am appalled at the conduct of this woman. My father is an Anglican priest, as is my uncle and one of my brothers, and this kind of abuse of the legal system is not something that makes sense in our (well, in my) understanding of Christianity. Of course, I am coming at things from the angle that autism is present at birth, which means that God either "caused it" or "allowed it", so the drug companies can't be at fault, and obviously the Rev'd Sykes is of a different opinion.

However, the subpoena is clearly an unChristian act of intimidation on the part of the Sykes' lawyer, and its specific mention of Kathleen's religion as potential cause for concern at her blogging activities is prejudicial and should not be allowed. In other words, "shame on you!"

My most recent Biblical study has been on the Creation story, as I was asked to tell it at the Easter Vigil service at the church I used to work for. But I have also recently been reading a book about confidence in women, and how we gain that through our faith and close relationship with God. When I read about Christians (and those of other religions) doing such untenable things, I wonder what their relationship with God is really like.

And that's all I have to say about that.

In other news, I would like to link you to another awesome post by David Wolman.

Oyah, the disclaimer:

I am not involved in the production of the blog at neurodiversity.com in any way, shape, or form.
I know nothing about US law.
I am fairly uninformed about the case in question.
I don't actually know a lot about biotreatments in autism.
I am not affiliated with the Anglican church in any official capacity, unless you count my membership with my church's music team.
I am not affiliated with David Wolman in any way, either; I just like reading his blog.
I have met Kathleen Seidel exactly once, at AutCom in Edmonton in October 2006. That was cool. That was when I met Joel Smith, Amanda Baggs, and Kassiane Sibley (I probably spelled your name wrong, Kassi; sorry!). I've been working on a blog entry about it for a while; eventually it'll get posted.

I think that about covers it. If I've missed anything, let me know!

A very good blog post.

2008-03-21T18:31:00.003-06:00

Here's the link: Autism and that other word

It's at David Wolman's blog. David is the man who wrote the article in Wired magazine.

I highly recommend you read both this new post and his article (and this older post, about reactions to the article).

Girls and ADHD and eating disorders etc.

2008-03-18T22:05:00.003-06:00

An article on the CBC web site announces that teenage girls with ADHD are more likely to develop bulimia than their non-ADHD peers.

The afternoon announcer on Shine FM, the local Christian radio station, asked for people to write her an e-mail about this article.

Here is what I wrote to her:

Hi,

I wanted to write because I am a 31-year old woman who was diagnosed with ADHD at the age of 28. Suddenly everything made sense (well, nearly everything); my lack of organizational skills, my sensory sensitivities, my impulsivity, etc. Two years later, clinical depression was added, and I am currently only taking medication for my depression - nothing for my ADHD.

When I was diagnosed with ADHD, I was also told that I had been using anxiety to manage my ADHD symptoms. I have the inattentive type of ADHD, and that makes me less likely (according to the study) to develop an eating disorder. However, my anxiety came out (and still does come out, occasionally) in the form of obsessive-compulsive behaviours and some very mild self-damaging behaviours. I bit my nails until I was 17 (at which point my parents got me fake nails for my grade 12 grad, and that got me to quit). When I was feeling badly about myself (due to depression &/or anxiety, or simply because I'd made some social faux pas yet again), I would often find solace in either eating too much or consciously limiting the amount of food I could eat.

Even though I am now on medication for my depression (and it does work, thank God!), I still find myself engaging in these self-destructive behaviours. There are some obsessive or compulsive behaviours that are not harmful to anyone, and I have never really been concerned about them, even though some of them have to do with food, because they are literally harmless (having to do with what order I eat my food and the fact that I sort my Smarties and M&M's by colour and then eat them in order either by number or rainbow). However, I still catch myself deciding that I "don't deserve to eat because I'm so stupid", and I tend to snack on junk food when I'm bored. The former hasn't happened since January, but I still worry about it. One thing I've always been glad of is that I'm so impulsive, I will never actually develop anorexia - it's impossible for me to stick to any kind of limiting plan like that for long!

I think I was very lucky with my family. My father, an Anglican priest, and my mother, a piano teacher, raised my three younger brothers and I with understanding. They nurtured our differences and allowed us - even encouraged us! - to be ourselves and to be individuals. While there were certainly some areas in which they had trouble being as supportive as they could have been (I was actively discouraged from pursuing a writing career, something to which I know I have been called), we were generally accepted as we were and taught to do the same for others. (Not a one of us is quite "normal", so really who are we to judge?)

I have worked with autistic children since 1999, and I have found that it is easier to teach children (regardless of their diagnosis; I have also taught Sunday School) if there are clear boundaries and expectations set and if the children's interests and strengths are the focus of the teaching. Individuality is something that is so important to us all, and it needs to be encouraged and grown in our children and teens. Without that, self-esteem is even harder to come by. And trust me, I know all about having poor self-esteem.

I have been in counseling in the past, both before and after receiving my diagnosis. I sought it out when I was nearing burnout because my anxiety was becoming unmanageable - I was having panic attacks. I am no longer in counseling, but I am still learning how to work with my brain (instead of against it) in order to manage my life.

I trust God for a lot of things. I've had to find ways to keep on top of my finances, because I tend to impulsively buy gifts for people - not a bad idea, but when you're on a tight budget already, not a good one, either. I'm still not totally together financially, but I'm learning what works for me and what doesn't, and that's the important thing. I spent two years working full-time as a church secretary, and I finally had to leave that job because it required so much from me that is so incredibly difficult. Being a secretary is hard work! You have to be organized (not something I am good at staying, though I can often get there on my own) and on top of a lot of things all at once (that I'm good at, but I'm also easily distracted). I've gone back to working with autistic children full-time, and this work is much more suited to the way my mind works; I'm able to be creative in my approach to my sessions with the children, they often change activities before I'm even ready to move on (that's pretty amazing), and we seem to understand each other fairly well.

Of course, as I noted earlier, my true calling is writing. I've had one short article published in Calgary's Child (last September/October), but I'm working on a couple of novels and write short stories a lot. Writing has always been one of the best ways for me to communicate, and it affords me the opportunity to feed my random and distractible mind - if I'm interested in something, I can research it and then write about it and then attempt to sell the result!

Learning to embrace myself as I am hasn't been easy. But I have to keep in mind the fact that God made me this way - ADHD is developmental, not acquired - and that while I certainly do have challenges in my life, he has also taken care of me all along. I do my best to follow him and be an example of Christ to others, and I truly believe that the best way to do that is by not only accepting others as they are, but by accepting myself as I am.

After all, the greatest commandment is to love God with everything we are, and the second is to love others as we love ourselves. How can we love others if we don't love ourselves?

-Janna

--
http://thehoskincentre.com

"Nobody realizes that some people expend tremendous energy merely to be normal." - Albert Camus
"I want to remake the world; anything less is not worth the trouble." - Karen Cushman

With the Light: Raising an Autistic Child, by Keiko Tobe

2008-03-17T10:47:00.004-06:00

With the Light: Raising an Autistic Child is an amazing book. It held my attention from start to finish, and I can't wait to lay hands on volume two!

The book is a manga, or Japanese comic book. The story told is one many families with autistic members will know well - the worry, the confusion, the desperation, the lack of understanding from others (including family). It is fiction, but based on information gleaned from interviews with many parents of autistic children.

What I appreciated most about the book is that it doesn't really touch upon the idea of "cure". The mother, Sachiko, merely wants her son, Hikaru, to be happy - and to call her "Mommy". (The scene in which he does finally do this brought tears to my eyes.) Her husband, Masato, begins as a workaholic who blames his wife for Hikaru's troubles - but changes his tune after a personal revelation about his own life.

The struggle to find Hikaru an appropriate school placement is very realistically portrayed. He is eventually put into a special education program at the local elementary school. At the same time, one of Sachiko's friends decides to place her own autistic son in a school for disabled children.

The small family also grows near the end of the book, as Sachiko and Masato welcome a daughter, Kanon, into the family. Kanon is developing typically, based on what we see in the story thus far.

I highly recommend this book as light reading. It took me a few hours to get through it, but I did read it all in one day.

And as I said, I am looking forwards to the second volume.

This post's icon was created by the author.

Not Being "Other".

2008-03-12T22:48:00.004-06:00

I was one of those quiet kids who sat in a corner and read as much as possible. I held in disdain any peers and adults who didn't share my skills and knowledge.

But I was lonely.

I desperately wanted friends, wanted the other children to like me. I just couldn't figure out how to convince them to play with me. I also had trouble dealing with making mistakes or being treated like I was stupid (which is generally the result when you make a social faux pas). And showing the others that I was talented, smart, etc. didn't get them to want to be friends with me, either.

So I developed a very rich inner life. I read voraciously and imagined vivid, fantastic stories. Daydreaming eventually became writing - a natural progression, I think, for one as addicted to reading as I.

I remember the first time I realized I could actually have proper friends. I was ten years old, and my grade five teacher recommended that my parents send me to a summer camp for children with creative gifts.

We did all the usual summer camp activities - hiking, campfire, swimming, etc. - but our main activities were things like writing (stories and plays), drawing, painting, and textile crafts like making paper. I think we even did some music, but I don't remember if I brought my clarinet, and I'm pretty sure there was dancing because one of the girls I befriended was a dancer.

Yes, I made friends. With girls (always difficult for me). I actually got along with my cabin-mates and was included in conversations and activities - not begrudgingly, but desirously!

I think I've been searching for that same sense of belonging ever since.

I've had friends (including females) before and since, but it's rare that I find a group of people with whom I feel included and truly valued as an individual. Even at that great summer camp, I was occasionally left "out of the loop" - but I don't think it happened as often there as it did (and does) in other groups.

I often feel left out of conversations, even when I'm supposedly a part of the group. And I definitely lack an "off switch" when it comes to talking. I still have that impatience for people who I think should "know better". And somehow I still think I should be able to win friends by "showing off".

This post's icon was created by the author.

It's probably okay to show these people as children,
since I don't remember anyone's name.
If any of these pictures is of you, please e-mail me! :)

Inspiration?

2008-03-10T22:57:00.002-06:00

I saw Autism: The Musical tonight and will be seeing it again in a couple of weeks. After my second viewing, I'll post a review.

I found the movie (documentary) very inspiring. Not because of the challenges the autistic children overcame in order to put on their show, either.

In 1988, Oliver & Company was in theatres, and I saw it with my family. In 1994, The Lion King came out. I saw it in the theatre twice in one week - once with friends and once with a child I was babysitting. And in 1999, I saw The Prince of Egypt with my best friend. These movies were all just as inspiring to me as was the movie I saw tonight.

It is the fact of these movies, their very existence, that inspires me. That someone crafted and created them. The music is inspiring, beautiful, amazing. There is truth inside each movie. And that inspires me.

I don't know yet what I'm inspired to do. But I feel hopeful in a way I haven't for a long time.

And that is good.

Being yourself.

2008-03-07T21:27:00.002-07:00

Last Wednesday was our education day for work. We attended a lecture in the afternoon, given by a doctoral candidate - Shane Lynch - at the University of Alberta. His lecture was about Positive Behavioural Support, which is a type of Applied Behaviour Analysis that is used in many fields besides autism treatment.

At one point in his lecture, he asked the director of the agency to list off about seven things she'd done on Saturday. She had to think pretty hard to remember everything, but she did manage to put together the list. Then he told her to tell him all of it again, this time without using words with the letter 'n' in them, and if she did, he was going to hit her in the head with a pen. That was a lot harder, but she managed it. Then Mr Lynch turned to the rest of us and said, "Now, imagine if I told you do do that for two weeks."

It was his analogy for what poorly-run autism treatment programs do to the autistic children they are "helping".

The icons I use on the posts here were created from screencaps of various episodes of the TV series Firefly (they also include some caps from the 2005 movie, Serenity). The series and movie were created by Joss Whedon, who is the creator of both Buffy the Vampire Slayer and Angel, both TV series that were amazing commentaries on our time. Joss' sense of humour is somewhat "off", as you can see from the quote in the sidebar, "Remember - always be yourself, unless you suck." But he is also a man of deep thought and insight, as you can see from another quote in the sidebar, "A person who is broken becomes whole partially because the people around her decide that she is."

Many of the icons I use feature the young woman in the icon on this post. River Tam, portrayed by the actress Summer Glau (who can currently be seen on TV playing the terminator character in The Sarah Connor Chronicles), is a broken person. Her mind has been shattered by the government, causing her to ramble incoherently at times - but her enhanced psychic abilities make it impossible to know if she is truly speaking nonsense. And, of course, to top it all off, the girl is a genius.

I like River a lot. Not because I think I am like her, but because the struggles she faces are so realistically portrayed. And because, when you watch the series and the movie, you can see her growing and changing - becoming that whole person Joss is speaking of in the second quote.

But River is always herself, no matter what, and that is part of what makes her so appealing, so charming - so charismatic.

I wish I could be like that.

I don't think people ever truly know who they are - not fully. But wouldn't it be beautiful if we were all able to truly be who we know we are at any given moment?

That is what I'm learning to be. But it's difficult, because I'm trying to overcome years of conditioning to "not use words with the letter 'n' in them".

Ah, someday...

Communication

2008-03-03T22:15:00.002-07:00

My boyfriend has undiagnosed Asperger Syndrome. Makes things difficult sometimes, what with the communication problems that come with that and the ones I have due to my ADHD. We had a bit of a blow up last night. Not really a fight, just a bit of difficulty that we were eventually able to resolve.

This afternoon, I had a session with a 13 year old autistic girl (this is a private contract, not through the agency). We went out to the book store and then hit Starbucks, where she got herself a Jones root beer.

Those familiar with Jones soda know that the lids contain sayings from fortune cookies.

Before I tell you what this girl's lid said, let me tell you a bit about her.

L is 13, tall and solid. She prefers to speak, does not read, and is extraordinarily good at puzzles, when she can focus. She gets stressed on occasion and has what appear to be small absence seizures (which have never been picked up on in neurological testing). She loves to go out and do things. When she has a meltdown, it's a quiet storm that typically includes tears, hair pulling (mine, not hers), attempts to get at some food, grabbing at people, pinching, and scratching (not violent pinching and scratching, just holding tightly and digging in). Speech is difficult for her, though it is her preferred method of communication. Her apparent functioning level is that of a much younger person.

She loves Franklin books and DVDs, Shrek, looking at pictures, talking about what we're going to do next, flipping puzzle pieces, and asking questions. She adores music and often chooses to listen to a CD or her MP3 player when she needs to calm down. She likes Arthur books as well, and loves to watch The Sound of Music over and over - just specific scenes, of the songs she likes best (Edelweiss, So Long Farewell, and sometimes The Lonely Goatherd).

And today, her Jones soda lid said, "You were born with the skill to easily communicate with people."

I don't know if that's irony or a prediction of her future.

The ideal service provider?

2008-02-23T17:59:00.003-07:00

Had First Aid training today, for work, and at the end of the day I got into an interesting discussion with a couple of co-workers. I didn't get to really expound upon why ABA isn't the best way to go (we don't do ABA at the agency I work for), and I definitely couldn't have done it scientifically anyway, but the chat got me wondering just what sorts of things I should be focusing on as I move through my career. I'm thinking again about school, and what I would study if I went back, as well as what kind of services I would focus on if I were to open my own agency and become a service provider.

I obviously have my own ideas, but I'm curious: what would you want in a service provider? As a parent, as an autistic person, as a professional in the field - what would you like to see being offered? Don't worry about whether or not things are already offered elsewhere - this is "in an ideal situation", what kinds of things you've been glad to see provided and what kinds of things you have sometimes wished you could access?

In which Janna experiences, first-hand, just why point #6 in her booklet is so important.

2008-02-21T16:37:00.003-07:00

The title of this post, is, of course, referring to the sixth point in this post.

Take care of your child's physical body.
Vaccinate him. Take him to the doctor regularly. Have his vision checked yearly, for eye health and other such things. Take him to the dentist regularly.
Pay attention to your child's body language. If he has poor body awareness, he may not realise that he is in pain or where, but there are certain behaviours that will indicate it to you if you are watching carefully.
Teach your child how to wash himself in the bath or shower. Teach him how to brush his teeth. Begin these "simple" hygenic routines (including when & how often) when he is young.
Pay attention to your child's diet and his reactions to food - including toileting, if possible. Any changes or abnormalities should be met with a visit to a doctor and probably some modification of his diet. Do your best to discover if your child has any food allergies or intolerances.

So here's the punchline: I am getting a root canal done on Thursday, February 28, at 12.00 noon.

The story itself is a relatively good one, in my opinion, and it illustrates just how important it is to teach that when & how of good hygiene, as well as just what poor body awareness can result in.

Keep in mind that my diagnosis is ADHD, not autism, and that my ability to communicate and look after myself is very good (seeing as how I've been on my own for 13 years and have managed without too many disasters).

At some point last week, I realised that my tooth was hurting. I have no clue when it actually started hurting. This is the second molar from the back, on the top left. Half of the tooth is a filling anyway, because of my poor dental hygiene (about which I have written elsewhere).

I know the pain was really bad Friday night. It was tolerable Saturday night, but horrible Sunday night. On Monday, Juniper and I invested in a small bottle of clove oil, which worked quite well until sometime Tuesday. Tuesday night, the pain was unbearable.

Wednesday morning, I bit the bullet and called the dentist. I got in for 11.00 a.m. that day.

The dentist diagnosed me after some x-rays and tapping my sore tooth with something frozen. (That didn't hurt at all.) Turns out that the tooth is dead, and the roots are all infected (which is why the tooth is dead), and the infection has spread into my sinuses.

The upshot of it all is that I'm taking Amoxicillin three times a day for the next week and getting a root canal on Thursday. In case anyone was wondering, dental care is not covered under Alberta Health, and I'm in between benefits at work, so I have to pay the $1300 (plus another $1000 for the crown) on my own.

The thing is, this is not likely to cause my dental hygiene to become what it should be. Executive dysfunction will make this difficult; a healthy fear of the dentist and lack of funds will do nothing to overcome that obstacle!

So, I've added 'hygiene' to my Palm Pilot, as part of my morning and evening routines. I'm hoping that I'll be able to make this happen, the way I used to make things happen when I was working at the church, by printing off a daily to-do list.

So here's the breakdown on how point #6 fits this story, in case you haven't figured it out on your own.

Take care of your child's physical body.
Vaccinate him. Take him to the doctor regularly. Have his vision checked yearly, for eye health and other such things. Take him to the dentist regularly.
Pay attention to your child's body language. If he has poor body awareness, he may not realise that he is in pain or where, but there are certain behaviours that will indicate it to you if you are watching carefully.
Teach your child how to wash himself in the bath or shower. Teach him how to brush his teeth. Begin these "simple" hygenic routines (including when & how often) when he is young.
Pay attention to your child's diet and his reactions to food - including toileting, if possible. Any changes or abnormalities should be met with a visit to a doctor and probably some modification of his diet. Do your best to discover if your child has any food allergies or intolerances.

Obviously vaccinations and vision care aren't a factor here, and neither is regular doctoring. However, regular dental appointments are vital, and are supposed to be spaced - at most - six months apart.

My poor body awareness means that I didn't realise that I was in pain until the pain was severe. This means that I also have no idea how long it hurt before I clued in to the fact that this was more than the usual "sensitive tooth" thing. Basically, things got a lot worse than they had to before I called the dentist.

And my lack of routine for dental hygiene is probably what caused the situation to begin with.

I don't blame my parents for this, by the way. They taught me how to brush my teeth, and they did make sure I did so every night before bed when I was young. It's just that they didn't know they had a child who would need more help and more supervision in order to make that a routine. They didn't know that they had a daughter who needed to have everything all chained together and drilled into her right from the start (yes, I mean from the start, as in from infancy). My opinion is that all parents should do so regardless, but that's not really prevailing wisdom, so we won't talk about that right now.

My mouth still hurts some. The antibiotics should kick in sometime tomorrow; I don't know if that means I will be in less/no pain, or what; the doctor didn't say. But in the meantime, I still have the clove oil, and massaging my gums with my finger or drinking cold water or juice seems to help.

Oh, and I wrote about this now because I know that I won't be able to write about it at all next week; I'm not sure how functional I'll be after spending an hour and a half in the dentist chair, having drilling and whatnot going on. A regular cleaning takes a lot out of me; a regular filling is worse... this is bound to be the worst thing ever.

I worry about the state of the world.

2008-02-16T14:25:00.000-07:00

Some people really don't "get it".

Over on ISCABBS, in the Medicine forum, there was a discussion going on about vaccines. Specifically, the HPV vaccine that is being given to 12yo girls in the USA.

Some people think it's ridiculous, others think it's fine. And then there's this guy:

Nov 14, 2006 14:09 from Knightshade
Except carriers die eventually. The disease would be gone in a generation or two if everyone were vaccinated and the vaccine were highly effective.

Notice how nobody gets polio around here anymore?

[Medicine> msg #84893 (8 remaining)] Read cmd ->

So I responded with the following:

Nov 14, 2006 21:43 from Jubilee
Knightshade> "Notice how nobody gets polio around here anymore?"

Not strictly true.

The reason why we still get polio vaccine is that polio still exists in the world, and people coming from other countries can carry it.

My mother's sister married a missionary surgeon, and their kids grew up in Angola and Canada (4 years one place, 4 years the next). My youngest cousin in that family missed his polio vaccine because they ran out in the place they were, and he *got it and nearly died*. He was 2. He's now 24 or 25, and still has some problems popping up even though he got better. (Basically because polio doesn't actually go away completely, it just goes dormant.)

And THAT is why vaccination is important. Just because "nobody gets that anymore", it doesn't mean NOBODY gets it anymore.
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And then the conversation got a little bit ridiculous:

Nov 15, 2006 07:58 from Knightshade
Err... I said around here.

As in in the US.

Because the vaccine has wiped it out.

If the third world nations had also had full vaccination for a generation or two it'd be wiped out there too.

That's how we got rid of smallpox too.
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Nov 15, 2006 10:33 from Jubilee
My point was that if we stop the vaccine, then there will be outbreaks because there are people who go to the countries that still have it. And they bring it back with them.

Why else would there be whooping cough and measles outbreaks happening since people have stopped allowing their children to be vaccinated? Those "don't happen anymore" either.
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Nov 15, 2006 11:13 from Knightshade
Here's my original post. I still can't figure out what part you're trying to disagree with-

Nov 14, 2006 14:09 from Knightshade
Except carriers die eventually. The disease would be gone in a generation or two if everyone were vaccinated and the vaccine were highly effective.

Notice how nobody gets polio around here anymore?

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(context- it was in reply to someone suggesting vaccinating everyone was silly since there's still "carriers" out there today)

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Nov 15, 2006 11:50 from Jubilee
I don't know that we're actually disagreeing so much as saying the same thing in different ways.

The point is that vaccines are important to continue until the disease is no longer anywhere *in the world*. I took issue specifically with the "around here" part, because if that mattered, we'd all die fairly quickly of things like measles.

If there's a vaccine, it should be used. Period. I think I'm behind on my boosters; I should check that out. I refuse to get the flu shot, but that's mainly because I almost never get sick (my last bout with the "flu" was actually an adverse reaction to my new meds - no Wellbutrin for me!) and also because I haven't seen anyone give a good reason for me to be vaccinated against last year's flu when I didn't even get *that* last year.

However, these other vaccines all make a lot of sense to me. I am worried, though, about the mentality that seems to come up time and again, that says "Nobody gets anymore, so my kid doesn't need to be vaccinated against it." The thing is, if you have children who aren't vaccinated against something going to school with kids who are, and then a new student comes in who perhaps is an immigrant from one of those countries that doesn't have a vaccine program and is a carrier of that disease, then you're going to have an outbreak. And the parents who didn't get their kids vaccinated might (might - that is, it is possible to die from these diseases, which is why there's a vaccine for them) end up with dead children instead of live ones. I don't know about anyone else, but I'd rather have a live child than a dead one.
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I don't follow the science stuff really closely. I freely admit that. But I know enough about it to know that this sort of thing is the result of the ridiculous campaigns of the anti-vaccine crowd. Ignorance, too. In this day and age, when it is as easy to fly to Nigeria as it is to fly to Vancouver, it's better to be safe than sorry, don't you think?

Personally, I'd rather have a live child than a dead one. That means vaccinations, unless someone can prove that my kid is highly likely to die (I mean physically, by the way) if s/he gets one.

Granted, that's moot since I have no children.

This post saved as draft and added to as the conversation progressed.
Posted once the discussion had scrolled out of the forum in question.

ABA vs Play Therapy.

2008-02-15T16:56:00.002-07:00

If you've been reading for long, and if you've looked around this 'blog for information about me, you'll know that I was once a fairly good ABA therapist. That's ABA as in "Applied Behaviour Analysis" - more specifically, the type of ABA developed by Ivar Lovaas as an autism treatment.

This type of teaching requires one-to-one interaction between the autistic child and his or her therapist, in a room free of distractions. All of the teaching is done in a very clinical, discrete style. Once a skill has been learned in isolation, it is generalized with other, similar skills, and later moved into the "real world". The specifics of the program - what is taught, how it is taught, and how one knows something is learned - are laid out in the program binder by a consultant. Everyone working with the child is expected to run the program in the same way. Deviation from this program will result in confusion for the child, and the skills will not be learned as quickly, if they are learned at all.

Again, if you have been reading long or have delved into the personal information on this 'blog, you know that I have moved away from the discrete trial type of teaching and am currently employed by an agency that adheres to what they call a developmental play-based approach to autism treatment.

Play therapy of the type I do now is done wherever one happens to be, with whomever happens to be there. Siblings are included, as are parents. Teaching happens in the kitchen, in the living room, in the bathroom, and in the bedroom. There is no isolation of skills being taught; everything is generalized right from the start. The specifics of the program - what is taught, how it is taught, how one knows something is learned - are laid out in a program plan, which contains goals and strategies from behaviour therapists (who only tackle behavioural problems), occupational therapists, physiotherapists, and speech-language pathologists. It is up to the individual working with the child to create and recognise learning opportunities during the sessions, and to help the parents incorporate strategies into their daily lives.

This morning, as I followed my client around the house, imitating his vocalizations (trying to show him that we might converse someday), squeezing his feet (he's a deep pressure junkie), and taking the sudden opportunity to teach waiting (he wanted into the kitchen for a cookie but hadn't had lunch yet), I thought about how the work I do now is so much more challenging than the work I did as an ABA therapist.

As an ABA therapist, I was not required to be creative. In fact, it sometimes seemed to me that creativity was actively discouraged in some of the programs I worked in. An ABA therapist, when it comes right down to it, must simply do as he or she is told, without question.

I don't know if you've noticed, but that's not exactly my personality.

As a play therapist, I have to be creative. It's up to me to come up with lesson plans and ideas for teaching skills that we have on a child's program plan. My job is to actually get down on the floor and play with the child, relating to him or her as if I, too, were a child. At the same time, I have to retain that level of control, so that the child does not become confused about my status and authority.

I've been thinking about the difference between the two for a while now, and I am interested in trying something here on this blog.

I would like to take some goals - IEP goals, perhaps, or just a random goal - and write up a sample of how an ABA program would teach those goals and how a play-based program like the one I currently work for might tackle them.

If you would like to see the difference and have some goals to offer, please e-mail them to me at janna@thehoskincentre.com. I'll change the names, of course. If you're offering a goal that you or your child has achieved, I would love to know how it was achieved and how long it took!

Thanks, everyone!

Coming Up...

2008-02-06T19:13:00.001-07:00

Well, as noted in my news section and in the sidebar, I've just published a booklet about "What You Can Do to REALLY Help Your Autistic Child". The booklet can be downloaded and printed off for free, to distribute to parents of newly-diagnosed children.

In some discussion about the booklet, I've been asked to create one for professionals (teachers, therapists, etc.) and one for adults to give to their friends & family members. I will begin working on these booklets once I have an idea of how to address things.

I have also been taken to task for the wording used regarding Facilitated Communication in the section on communication. I admit, I did not give the correct caveats regarding this particular method of communication. I will publish an edited version when I publish the next booklet, and I will correct the mistake at this time.

This posts' icon created by hobbitseeker, of the LJ community Big Damn Icons.

Domestic Bliss.

2008-02-04T20:30:00.000-07:00

I'm going to take a moment now to write about relationships. Specifically, I'm going to write about my current romantic relationship. There are a lot of types of relationships - siblings, parent-child, work, friends, etc. - but I think romantic relationships are the kind of relationship many people find most interesting.

Since I began writing on this blog, I've been involved in a total of three romantic relationships (the current one being the third). The first was a long-distance relationship with an autistic guy who was much younger than I was. The second was a short-lived relationship with a man I had attended high school with. My current relationship is with a man who is a self-diagnosed Aspie. He has been married before, which is not a quality I thought I would be okay with when I was younger. But we are well-matched in many ways, and that is far more important.

Because we both have some trouble with communication, we have decided from the outset that we should be as open and honest with each other as possible. We don't really think in the same way, but often our thought processes follow the same progression (just in different styles). There have been some difficulties, of course, primarily because I don't always have words for things I am thinking or feeling, which means I can't explain myself - and my dear Aspie man has an innate need to understand things and find out everything he can about something he doesn't understand.

We met in October, at the Asperger's Meetup group I've been a member of for a few years now. It was rather strange, as we both realised from the beginning that we would be together and be married. It wasn't "love at first sight", though; love definitely grew as we got to know each other. It was merely an instantaneous knowledge that we were meant to be married.

I have recently moved - with the guinea pigs - into his house. I have taken over the kitchen (getting rid of his excess - why would anyone need 30 mismatched dinner plates and four blenders?) and turned the second bedroom into my office. The three-month old kitten (who thinks I'm her mother) sleeps in my hair every night. (You do not want to know what kitten hair looks like in the morning.)

And we are definitely happy. Life is settling into a kind of routine that I have long desired. From what we eat to how we discipline the kitten (she hasn't quite figured out yet that she shouldn't try to eat our dinner or climb our legs), we work together to get things done. I never really thought of myself as being tremendously domestic, but I seem to be turning into someone who actually cares about housework and the like.

Someday, I will be posting here with news of our engagement and pending wedding. We are merely waiting for him to be hired in his field (he is a hardware engineer) and for us both to get some of our finances straightened out before we take that step. We want children someday, too, and I plan to stay home with them and homeschool them.

In the meantime, we have Roy the kitten and Napoleon and Katonia the guinea pigs. Quite the little family. :)

Back in the saddle...

2008-01-07T14:13:00.000-07:00

I have a new job.

For the past two and a bit years, I've been working as a church secretary. I'd basically burned out in my previous career - that of working with autistic children - largely due to the politics involved in being an "independent contractor".

While I've appreciated the steady income and job security at the church, it's become clear to me that I am simply not cut out for an administrative office position. These two years have given me time to reassess my skills and abilities, and I have to say - while I'm a capable office administrator, it's not one of my gifts and it is most definitely not an enjoyable position for me.

So, I have found a new job.

I'll be working for LEAD Foundation, a local organization that provides both PUF (preschool unit funding) and Specialized Services to children with special needs in the city and area. Their primary focus is autism.

My last day at the church is next Friday, January 18. Tonight, I meet the family of one of the children LEAD would like me to work with, and if we are a good match, we will move on from there.

I am looking forwards to getting "back in the saddle", as it were. Getting back to working 1:1 with children - particularly autistic children. Getting to be creative - truly creative, as we turn ordinary, everyday objects into the most amazing, wonderful toys. Playing physical games like tag, wrestling, giving piggy-back rides. Sensory play. Building with blocks. Learning even as I teach.

Every child I've ever worked with is different; an individual; an exciting person I'm privileged to meet.

So... I'll soon rejoin the "professional" ranks. I think this is a good move for me to be making. I hope it's as good for the children I'll be working with!

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My Own Lack of Restraint.

2007-12-31T13:19:00.000-07:00

The topic of this post is not a pleasant one, but it is certainly an important one. It is not something that only autistic people need to be concerned with, either.

The topic is the use of restraints.

I'm currently researching this topic, looking at web sites and journal articles about restraints and how and when they are used.

My personal bias: I am against the use of restraints. I have never felt the need to use restraints. I have never had training in the use of restraints. I do not wish to receive training in the use of restraints.

People die in restraints. People are terribly injured in restraints.

Restraints are often about power and control, and they are abusive in nature.

The impetus for this investigation?

I recently discovered that a local program, one which I had hoped was a good program, uses restraints.

The Salvation Army's BRIDGES program is geared towards preschool children (aged three to six years). The children attend school at this program. A class is twelve children, and there are two "Child Care Counsellors", a teacher, and an aide in each class. That is a ratio of three children to one adult.

The children in this program have emotional and behavioural disturbances/disorders; many come from abusive home situations. Few, if any, are on the autism spectrum. I want to make that clear right from the start - I am not upset about this program because autistic people are being abused in this manner, but because children are being abused. PERIOD.

The people employed in the program are expected to maintain a calm demeanour at all times, because a raised voice can trigger abuse flashbacks for the students. This is to be applauded.

Unfortunately, the fact that restraints are used "as a last resort" is the reason I will never be able to recommend the program to people.

I cannot conceive of any situation in which it could be necessary to restrain a preschooler in a "basket hold" (the only restraint used by this program, as it is the only restraint allowed by Alberta law, even though it is just as deadly and injurious as any other restraint). If I, as an adult, allow an interaction with a child that young to escalate to the point where I fear for my own safety or that of the child or others in the room, then I must naturally be in the wrong profession.

I've worked with children who had violent outbursts.

One boy would get completely overloaded and then explode without warning. He frightened pretty well everyone in his life when that happened, except for his father and me. We knew how to calm him down: leave him an escape route and provide whatever deep pressure he would allow to his feet and legs. Once he was able to listen, talk him down. It worked every time. And he was nearly as big as I was.

I've been head-butted in the nose without warning (luckily, no bleeding or breakage). I've been bitten in the arms and had a bruise on my right wrist for over a month due to one such incident. I've had my hair pulled, both from the ends and at the scalp (scalp hurts more, trust me). I've been pinched, kicked in the head, and scratched.

I have a scab on my hand just healing over finally, from a gouge received two weeks ago today when the 13yo girl I work with had a meltdown. Hers aren't "violent" - she is a quiet storm when she gets overloaded and anxious.

When a preschool child begins to "lose it", the best plan is to try to talk them down or distract them. If things escalate despite your best efforts, pick them up and remove them from the situation. As the adult, you are able to do this easily. Away from the distressing environment, it is easier for the child to calm down. It is possible for them to hear you when you tell them it's okay to be upset, but we have to try not to hurt people and we can't always get our way. And it's possible to come up with a livable solution to the problem - one the child can take ownership of, because he helped come up with it.

That is my anecdotal experience. Soon I hope to have empirical evidence, as well. I welcome discussion of restraints here and in my e-mail, and I would appreciate any evidence for or against my position, as well.

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Prejudice masquerading as open-mindedness.

2007-10-23T22:22:00.003-06:00

Statements that really bother me:

"She's really involved in the Catholic church, but she's really nice."

"He's black, so I wasn't sure, but he's really nice."

And a recent conversation that demonstrates precisely my point:

"I had a date Sunday afternoon."
"Oh? Who with?"
"A guy I met at the meetup last week."
"Oh, is he autistic?"
"Asperger's."
"So is he high functioning?"

For me, these things are secondary matters, if that.

For other people, apparently, they are of primary importance and their presence in one's life must be justified by such things as "nice" or "high functioning". Because, of course, we can't be friends with (or date) a person simply because we share common interests and enjoy spending time together. Of course if we have a different religion or attend a different denomination we can never be friends. Of course if we are of different ethnic backgrounds we can't possibly get along. And a person with a spectrum diagnosis will never make a good friend or lover.

Apparently I missed that memo. I think I'm glad I did.

Call for photos

2007-10-18T00:19:00.001-06:00

I have turned the list from the previous post into a booklet, but I am in need of some photos to put in it to illustrate the points. These pictures will basically form a collage, or splash page, on the inside cover of the booklet, and they will be the only colour in the entire publication.

So, all you parents out there, if you have a particularly precious photo of your child that you would like to share with the world, please copy & paste the text below into an e-mail and attach the photo. I can be reached at janna@thehoskincentre.com.

I, , give permission for the photo(s) attached to this e-mail to be used in the What You Can Do to REALLY Help Your Autistic Child booklet by Janna Hoskin, of Calgary, Alberta. I understand that this booklet will be made available, free of charge, to autism societies and autism advocates around the world. I claim full ownership of the copyright of the photo(s) here attached, and I am the legal guardian of the child or children here pictured. I hereby grant Janna one-time use for the above-named publication. I understand that Janna will contact me again in the future, should she wish to illustrate future publications using this/these photo(s).
Date:
Full Name:
E-mail Address:

When I'm finished, I'll make the booklet into a PDF and place a link here on this site as well as on my web site. It will be available for free download and printing for anyone who wants to use it, though I would appreciate an e-mail saying you're printing it and for what purpose, so that I can keep track of such things. (How it was received by those you gave it to would also be great!)

EDIT - 04.02.2008

The booklet is finally finished. I decided to use the pictures to illustrate specific points in the booklet, instead of doing the splash page that I had described initially. I've done two versions.

The first, which you can download here, is a booklet that you will want to print double-sided on letter-size paper and then fold. The pages are numbered! The second, which can be found here, is more like a newsletter type of document. This one you can print either double-sided or single-sided, again on letter-size paper, and then staple in the top left corner to pass out to people.

Finally, both versions are PDFs. You'll need Adobe Reader (a free program) in order to view the documents. I hope you find these useful!

As noted previously, these documents are available for free download, printing, and distribution. They are meant to be used as informational resources, particularly for parents who have recently received their child's autism diagnosis or who suspect their child may be autistic. I ask only that my name and contact information be kept intact with the document. Thank you.

What You Can Do to REALLY Help Your Autistic Child.

2007-10-16T12:23:00.000-06:00

I spent this past weekend at AutCom, in Edmonton. It was a restful end to a rather stressful "vacation". I'll post later about it; I want to draft the post and then have certain people check it over so that I don't say things they don't want publicized etc.

This particular post is in response to the most recent comment on my post about the book review I wrote for What you can do RIGHT NOW to help your child with autism. The commenter asked me for my own "top 10" items, so yesterday I drafted a list and got input from a few people at the autism meetup last night.

And now, without further ado, I bring you my own list of what you can do to REALLY help your autistic child. It's just in point form right now, and I would definitely appreciate input and suggestions. Who says it just has to have ten items on it? Certainly not me!

What You Can Do to REALLY Help Your Autistic Child

Be realistic with & about yourself & your child.
- Recognise that your child is still your child - nothing has been stolen or killed here, except perhaps a few of your fantasies. And, let's face it, no child grows up to be precisely the person his parents imagined during pregnancy.
- Allow yourself to be upset about the diagnosis, and don't try to hide it. Emotions are not "good" or "bad" in and of themselves, they simply exist. It's what we do with them that generates value judgments.
- If you find yourself constantly "stuck" in negative thought patterns (not "bad", just negative), get some counseling to work through it. Your child needs you to be functional, and people who are depressed are only marginally so.
- Don't believe the hype. Autism is not the end of the world, and autistic children grow and develop, just like their neurotypical peers do - just at a different pace and in a different order.
- Don't throw out your dreams for your child, just modify them and keep modifying them as he grows. And make your primary goal his happiness.
Read everything you can find by autistic people, and meet as many autistics as you can.
- The best way to learn about autism is to get to know a lot of different autistic people. Every time I meet someone new - in person - I learn something new that I hadn't thought of before.
Meet your child where he is at right now.
- Don't expect him to be someone he isn't. This means you have to abandon your ideas of what is "normal", because he never will be (and shouldn't feel the need to be).
- Recognise that your child's abilities will grow and change globally over time, but he may not always be able to demonstrate them in a given moment. Sometimes he will be able to perform "typically", and sometimes he will not. Other times, he will perform above his peers.
- Don't expect more than he is able to give. By the same token, don't expect less than he is able to give.
Establish functional & effective communication.
- This is the most important thing you can do to help your child, after you've dealt with your attitudes & expectations. Even if your child speaks, some form of Augmentative/Alternative Communication (AAC) will be useful for times when speech is difficult or impossible.
- The most functional & effective types of AAC are pictures and typing (including Facilitated Communication). Get one of these going (or all of them), and remember that AAC has been proven to encourage speech (scientific references not available at time of writing).
Deal with sensory & motor development.
- These are tied together, and sensory processing differences will absolutely have an impact on your child's motor development.
- The goal is not to change your child's sensory processing so that it is the same as other people's, and we don't want to "desensitize" him, either. The goal is to find ways to help him feel comfortable in the environment. This could mean ear plugs or earphones. It could mean coloured lenses. It could mean only wearing flannel and cutting all tags out of his clothes. Be creative.
- Also, we don't want to force your child to perform motor skills that are painful for him. Low muscle tone will cause a lot of problems with both fine and gross motor skills, and while it is possible to compensate for low tone by building muscle strength, it is important to recognise that this kind of compensation uses a lot of energy, so he will probably tire sooner than his neurotypical peers.
Take care of your child's physical body.
- Vaccinate him. Take him to the doctor regularly. Have his vision checked yearly, for eye health and other such things. Take him to the dentist regularly.
- Pay attention to your child's body language. If he has poor body awareness, he may not realise that he is in pain or where, but there are certain behaviours that will indicate it to you if you are watching carefully.
- Teach your child how to wash himself in the bath or shower. Teach him how to brush his teeth. Begin these "simple" hygenic routines (including when & how often) when he is young.
- Pay attention to your child's diet and his reactions to food - including toileting, if possible. Any changes or abnormalities should be met with a visit to a doctor and probably some modification of his diet. Do your best to discover if your child has any food allergies or intolerances.
Educate your child.
- It is highly improbable that your child is incapable of learning. Teach him academic skills. Send him to school with an aide, if necessary, or home-school him. However you do it, teach him academics. Stimulate his brain.
Parent your child.
- Autism is not an excuse for poor behaviour. At the same time, it is a reason for some things. While you need to be sensitive to your child's needs, it is also important to be sensitive to the needs of other people.
- Take parenting classes if you are uncertain about the different styles of parenting. You want, in the end, to have raised a person who is thoughtful of others and who leads a good life.
Encourage your child's interests.
- An intense interest in watching birds could well lead to a career in ornithology. A love of putting things in order could lead to a career in a book store. You never know what your child will achieve if you are encouraging and realistic.
Allow your child to be a child.
- Children play. Children read books for fun. Children are creative beings. So is your autistic child. Don't take that away from him. He shouldn't be harassed all day by adults trying to force him to "play correctly" (that's not play, that's work), or read out loud to them (again, work), or draw the same picture over and over (not creative).
Foster pride within your child.
- He should be proud of who he is and what he can do, just like all children should. Don't fake your own pride of him, but do your best to find something to be proud of every day.
- A healthy self-esteem includes pride in oneself as well as humility. A person with no pride has poor self-esteem, and a person with no humility has too much self-esteem.
Show and tell your child that you love him daily.
- Love includes respect. Respect his needs. Respect him as a person. Give him the kind of control he needs to have over his life. Once in a while, join him in his happy stimming. You will both be happier for it.
- Daily, give him the kind of hug he likes best. It may be the lightest touch to the back of his head. It may be a deep-pressure squish or squeeze. It may be a "regular" hug.
- And, finally, use your words. There are only three you need use every single day: "I love you."

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Another year older.

2007-09-16T22:10:00.000-06:00

Friday was my birthday; I'm 31 now. It's been quite a year, to be sure. I've been published, I've been on the news, and I've slowly been getting myself pulled together.

I move next week. I'm going to be working evenings and weekends as a live-in nanny for someone who works evenings and whose husband is a professional skier. She used to work at Margaret House, the residential home that's run by the Society for the Treatment of Autism - one of those 'ABA-only' non-profit service providers. I'll be working for her in return for my room, so my rent and utilities will no longer be a burden financially. (And, for those who are wary, we're working out a written agreement that will assure me time for myself.)

I'm still on 20mg Cipralex for the depression and 20mg Dexedrine for the ADHD. I do hope that someday I will be able to go off the antidepressant, and maybe even the stimulant, but right now I definitely need the medication.

Work is going well. This summer I was able to really take control of things and start to define my role and the position itself. It's still very much a work in progress, of course, but so am I, so I'm not complaining!

And there's the thing. I'm a work in progress. My life is a work in progress. But it's good. I'm doing things the way I need to, the way I want to, and it's working out.

This isn't an advocacy post, or really an autism post or an ADHD post or anything like that. It's just a short update.

So I'm another year older.

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When it isn't simple.

2007-09-06T13:19:00.001-06:00

The power at my house got shut off yesterday. There were things I could have - and, certainly, should have - done in order to prevent this occurrence. Be that as it may, the power was shut off, and I had to deal with "Customer Service" people whose main purpose in life seems to be to upset and confuse me, leave out vital information, and tell me it's all my own fault.

See, what happened was that when I moved in February, I called the power company and said I was moving and needed to have power at the new address. I gave them the new address. We had power. All was well.

Except it wasn't, because I didn't get any bills. They were still going to my old address (where I have never had power in my name). So last Friday, we got a disconnection notice. I called the number on the notice and reached customer service, which is when I discovered the stupidity of the old address. We corrected that, and he gave me the number for the payment arrangements office, but there was a long wait and I was at work.

Needless to say, the call didn't happen in time, which is why the power was disconnected.

But this isn't really about the power and how I feel the power company failed me, it's about how the system fails people like me all the time, every day. When I was on the phone with the rep in payment arrangements, he told me a number of things (all "you should have" statements) that show that he assumed he was speaking with someone who has a neurotypical brain, or at least a decent level of executive functioning.

Not sure what I mean? Let's break it down.

First, here are the steps for paying a bill, using internet banking (my preferred method of dealing with this stuff):

Bill comes in the mail.
Open the bill.
Check the amount owing.
Go to the computer.
Open the bank web site and log in.
Check bank balance.

If balance is high enough, set up the payment for today's date.
If balance is too low, figure out when next payday is and set up the payment for then.

File paid bill in a pile of papers and forget about it.

Keep in mind that this process can be sidelined at any moment in time, and sometimes steps 4-6 will get skipped in their entirety.

Now, the steps to paying a bill if you don't actually receive the bill:

Realise that you haven't gotten a bill from service provider X in a couple of months.
Call service provider X and navigate voice recognition system.
Find out from customer service rep why you didn't receive bill.

Write down balance owing.
Write down new account number.

Go to the computer.
Open the bank web site and log in.
Check bank balance.

If balance is high enough, set up the payment for today's date.
If balance is too low, figure out when next payday is and set up the payment for then.

File piece of paper with balance owing and account number on it in a pile of papers and forget about it.

Given the complexity of step number one, even, it shouldn't be at all surprising that I never got around to calling the power company to find out why I never got a bill.

You don't think that's complex? Here's the breakdown:

Month one: realise that gas & cable bills have come, but no power bill.

Wonder idly why power bill didn't arrive, but remember calling so figure that maybe it's bi-monthly billing or something.

Month two: again, no power bill.

Think of calling power company, but driving to work at the time, so resolve to call first thing at work.
Arrive at work and promptly forget all plans to call power company.

Months three through six: still no power bill.

Not even registering at this point.

Don't even get me started on those horrid voice recognition systems, the long wait times that seem to be designed to get you completely stressed out before you get to talk to a person, and the customer service reps' inability to understand the simple fact that half the responsibility for my lack of payment falls squarely on the power company's shoulders.

So, Mr Smart-Aleck Customer Service Rep from yesterday, sometimes it just isn't all that simple to call the power company when I don't get my bill like I ought to. Perhaps the service provider should take more care in their hiring so that mistakes like the one made back in February don't happen again.

PUBLISHED!!!!

2007-08-30T10:53:00.000-06:00

My article about the Friend 2 Friend Society was published! I'm so happy! Check it out at http://www.calgaryschild.com/downloads/issues/cc-septoct-web.pdf (pages 84-85).

Oh, um, that PDF is HUGE. A shorter version PDF can be found at http://jannalouise.thehoskincentre.com/JH/CC200709.pdf. This should download a lot faster!

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My first solicited book review.

2007-08-29T23:11:00.000-06:00

This is the link and basic overview of the book review I have done of Jonathan Levy's What You Can Do RIGHT NOW to Help Your Child with Autism. It's not a positive review; I'm sure you can tell that from the grade I gave it in the chart below. The link is to the PDF of the 1,009 word review I wrote, which doesn't get as deep into things as my chapter-by-chapter reading of Greenspan's book does, but definitely makes my point. (I hope.) Oh, and don't worry, I'll be doing a chapter-by-chapter analysis of this particular gem as soon as I'm finished with the Greenspan, so you'll be treated to my sarcasm and cynicism that way. This review is more serious than my analyses.

Since books about "treating autism" tend to be all about evaluating the autistic person, I've decided to grade all the books I review on a scale I found that is used to grade college-level essays. I've provided that scale at the end of this entry.

Enjoy!

What is it they say about good intentions...? Solicited review of Jonathan Levy's What You Can Do RIGHT NOW to Help Your Child with Autism	D (9/15=60%)
Summary :: 4 :: no references beyond personal experience Commentary :: 3 :: plusses are all described very well Critique :: 0 :: no negatives considered Overall :: 2 :: no scholarly research indicated, and no real insight shown

Summary	/5	Thesis clarity; Explains key concepts; Links ideas together; Coherent summary; References
Commentary	/3	Clearly identifies main points of interest; Indicates merits of the views presented; Cogently describes impacts of views
Critique	/3	Clearly identifies main drawbacks/problems; Cogently describes issues; Considers response to issues
Overall	/4	Clear introduction; Conclusion; Scholarly research; Offers insight or interesting points of view
Total	/15	A+/90%/13.5; A/85%/12.8; A-/82%/12.3 B+/80%/12; B/75%/11.3; B-/72%/10.8 C+/70%/10.5; C/65%/9.8; C-/62%/9.3 D+/60%/9; D/55%/8.3; D-/52%/7.8 F/50%/7.5

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The Growth of the Mind - Part One :: The Processes That Build the Mind - Chapter Five

2007-08-28T22:57:00.000-06:00

I apologise for the length of time that has passed since I posted my last entry on this book. I honestly believe that, not only was the too-low dose of Strattera not helping, it was also causing me dyslexic-type problems. My reading comprehension was nearly decimated. And then I moved house and the book wound up not easily accessible anymore. With the advent of requests to review new books, I came to the conclusion that I'd best get on with it, so that I can regale you with sarcastic comments (and, hopefully, some seriously wonderful reviews) of these other books.

The Origins of Consciousness, Morality, and Intelligence

...the origins of consciousness, morality, and the higher levels of intelligence. Here the term consciousness is obviously more broad than the sense used in the emergency room, implying a complex combination of perception, intentionality, and selfhood that permits reflection and understanding. (p. 110)

...how children and adults actually grow. The transition from a newborn organism that is simply a biological entity to a person functioning intelligently and self-consciously occurs in observable developmental stages. (p. 110)

I wonder what Greenspan's opinions are regarding (1) abortion and (2) infanticide? At what point is human life sacred, if a baby isn't a person?

The Growth of Consciousness

Consciousness, a subject at the interface of psychology and philosophy, brings together the perspectives and traditions of each discipline. ...physical structure of the brain and such subjective experiences as self-awareness and contemplation of specific emotions and ideas. ...early theories involved suggestions of both a physical or objective as well as a spiritual or subjective aspect of human consciousness and mental phenomena. ...dualism between materialistic objective and individualistic subjective views of human nature is a continuing, unresolved theme... important social and political implications. (pp. 110-111)

...Daniel Dennett... would like to believe that all mental phenomena, including consciousness, must be explained by the physical activity of the brain. As we have seen, however, the brain grows through constant interaction with affective experience. ...children who do not have certain types of interactive experiences... even when their brains function normally, may lack the capacity for self-reflection. ...children with physical problems affecting the functioning of the nervous system also evidence impairments in consciousness. Children with autistic patterns rarely display any degree of self-awareness and self-reflection until later in the course of therapy. (p. 111)

I find this whole train of thought unsettling and offensive.

How does experience become integrated into the physical activity of the brain to create these levels of consciousness? ...the brain's ability to experience and organize emotion. (p. 111)

I think that Greenspan is less a scientist and more a philosopher.

...the growth of consciousness relates to the evolving awareness of our own affects or emotions. (p. 111)

...the infant initially experiences global states such as calmness, excitement, and distress that appear to be largely physical in nature. As the nervous system grows, infants are able to experience and express their state of mind more subtly... an infant must have interactive experiences with caregivers; deprived infants tend to continue to evidence more global expressions. ...experience continually refines physiologic expression and growing physiologic regulation serves as an organizer and expressor of more complex interactive emotional experiences. (p. 112)

Over time, as experiences are organized in a continuous cycle by a growing range of affects, a subjective inner world is formed. ... Both the inner subjective world and the awareness of outer reality emerge gradually from the feedback loop of interactions between affect and experience. (pp. 112-113)

Emotions therefore not only become the complex mediators of experience but also serve an internal organizing and differentiating role. What starts off as a physiological system receiving the input of the senses becomes, through the results of developmental experience, both a complex social tool and the vehicle for structuring internal mental life. (p. 113)

The evolving cycle of experiencing and categorizing appears to affect the physiology of the brain, rather than just vice versa, in an intimate dance between nature and nurture. (p. 113)

Our word for emotions indicates their dual nature: what we call "feelings" are not only psychological states but also concrete, visceral sensations. (p. 113)

The tie between emotional and physical feeling is thus neither accidental nor symbolic. ...wired into our neurology and musculature. Merely acting out the external form of an emotion can produce something of the genuine affect. (p. 113)

Emotions alone do not build consciousness, however, any more than sensory experience by itself builds the mind. ... The growing brain, with appropriate nurturing, becomes a better and better pattern detective. These patterns become more intentional and complex, organizing into the six levels discussed in Chapters 3 and 4. As described, at levels five and six they are translated into images and a representational sense of self, or consciousness, arises. (p. 114)

But autistic people are often highly gifted in their ability to see patterns. So perhaps their brains are more highly evolved than non-autistic brains?

What we typically mean by "consciousness" is self-reflection, which represents a fairly late stage of development. (p. 114)

The first sign of consciousness is simply a baby's sense of aliveness: the bubbling of his feelings in response to sensations at a time when he cannot yet distinguish himself from the world around him. ...sense of affective aliveness. (p. 115)

Even prior to the formation of symbols, there is cohesion, purpose, and a type of meaning. (p. 115)

It is hard for the adult to imagine how an infant or toddler experiences himself during the stages of this process. ... Perhaps only in certain forms of artistic expression can earlier forms of consciousness be tapped. (p. 116)

...consciousness clearly varies from individual to individual in the content of the emotional drama embraced by it. ...the ability to experience the most basic human emotions in ourselves and others and to reflect on these in the context of our families, society, culture, and environment. (p. 116)

Maintaining higher levels of awareness depends on essential physical needs being met and emotions being regulated so that intense affects to not obscure the subtle patterns and variations that support higher mental abilities. ... The highest levels of consciousness only are possible when material requirements and the need for security are met. (p. 117)

Reminiscent of Maslow's heirarchy of needs.

...complex problem solving involving two-way affective communication depends in part on an evolutionarily advanced aspect of the parasympathetic nervous system which has pathways into the cerebral cortex. ...the ability to make rapid physiologic shifts in response to affective problem-solving interactions with things and people. (p. 117)

The most crucial of human capacities, then, is the immeasurable power to register the world through affects, integrate these into an emerging consciousness, and express with the body as well as words and symbols a vast range of feelings. (p. 118)

...if affective development is essential in shaping the mind, solutions to the ills of both the individual and society must take it into consideration. (p. 118)

The Roots of Morality

Regard for others develops from a sense of shared humanity. This capacity develops only in a baby who has the chance to interact routinely and consistently with an admiring, supportive caregiver in a relationship that provides security and intimacy. (p. 119)

The feeling of being cared for and caring for others eventually becomes the basis for empathy. (p. 119)

At school age, children are able to be empathic in the true sense of the word because they feel secure enough about who they are to lend a piece of themselves to experiencing what another person might feel. ...the ability to consider the feelings of others in a caring, compassionate way derives from the child's sense of having been loved and cared for herself. ... We learn about empathy and compassion not from what we're told but from how we're treated. (pp. 119-120)

Another important developmental root of morality derives from the child's participation in preverbal interaction. ...safety versus danger, acceptance versus rejection, approval versus disapproval, pride and respect versus humiliation, ...initially understood through such exchanges between caregiver and child. ...early communications reflect many of the family's personal and cultural patterns. (p. 120)

To the degree that there are different reactions in different families to a child's expression of emotions, explorations of her body, or first altruistic leanings, varying expectations begin to form regarding what's good and what's bad, what's right and what's wrong. These expectations shape the deepest level of the growing mind, below that of words or even visual images. ... Subsequent experience may strengthen or challenge these primary beliefs. (pp. 120-121)

...it is important to distinguish compassion and empathy for others from the acquisition of complex social skills that involve comprehending the intentions of others, understanding their feelings, and even behaving in prosocial or altruistic ways. ...the reading of social signals and the more advanced capacity for cognitive abstraction are not the essence of moral development... These abilities, which underlie general intellectual and social development, are requisite before many higher-level social and cognitive skills, including certain aspects of moral reasoning, can be acquired. The critical ingredient that determines how an individual uses these skills, however, is the quality of compassion and caring. Morality is defined by this quality, which rests on emotional experience. (p. 121)

This bit is confusing; is Greenspan saying that SOCIAL SKILLS "underlie..." or that MORALITY does?

As the child moves from the preverbal stage into that of using ideas, his view of his own intentions and his expectations of others are vastly enriched. ... Coupled with compassion, the ability to grasp a range of one's own and others' feelings makes possible the gradual maturing of the moral sense. Painful experience, however, can heighten polarized patterns. ... Fixed beliefs derive from rigid personal needs that do not allow an empathic grasp of the complexities of other people's lives. (p. 122)

Mature empathy and morality are possible only after an individual develops the ability to connect emotions and ideas, to reflect on himself and his actions, and finally to construct an inner world of stable values alongside that of changing experiences. (p. 122)

...moral capacity has sometimes been assessed along mostly cognitive lines. ... What is often not sufficiently understood is the importance of a person's emotional range and flexibility to the growth of moral sensibility. ... In areas in which we feel anxiety and conflict, we often tend to have overly concrete rigid, or polarized views. Most of us are therefore more empathic and morally discerning in some emotional areas than in others. (p. 122)

...our sense of morality continues to develop throughout our lifetimes. ... A seasoned ethical perspective cannot arise when personal experience does not allow abstracting principles of human behavior. Wisdom and morality are close cousins, both the outcome of a long developmental process cultivated by affective experience. (p. 123)

Certain people seem to put their traumas behind them by trying to prevent others from suffering as they did. ...as children they usually had at least one adult who treated them with compassion or love. ...individuals who lacked any such positive relationship in their early lives are often unable to use their own challenges as a motivation for improving the plight of others. Although some mental health professionals maintain that denying problems can lead to deeds of kindness and caring, it is rare indeed that this is true of anyone not fortunate enough to have had some experience of warmth and compassion in childhood. (p. 123)

...it's important to distinguish between children who are indulged with material things and opportunities and children who are given real warmth and compassion. ... Strong or weak coping skills can be passed on within a family for generations. (p. 124)

Even when this sort of care is provided, however, it is only half of what is required for developing a moral sense. The other has to do with structure and limits. ... A child who is not given an appropriate structure and limits often develops a negative self-image because she doesn't feel confident about handling her own feelings. The key to establishing structure and limits is to build them into the child's everyday experience. They must be firm but gentle, consistent but flexible. (p. 124)

I think maybe this is what Mom meant about not having enough limits, but she didn't have the language.

Children who require especially strict limits because of either early challenges or their own physical makeup also need extra warmth and compassion. The more difficult the child, the greater the tendency in parents or other caregivers to increase the limits reflexively, perhaps punitively, without simultaneously increasing their emotional support. Punitive limits alone often lead either to fear or to aggression and rebellion. Firm, gentle limits coupled with a sense of security contribute to an internal sense of responsibility. (p. 124)

Moral values are highly personal, shaped by a distinct blend of each individual's religious and cultural background, beliefs, and experiences. Principled people of good will may differ on issues like aortion or euthanasia or the proper role of government in our lives. Even so, they share certain characteristics. They struggle with upholding their views while maintaining an attitude of respect, compassion, and responsibility toward others. While good people can have different views on many complex issues, they agree on the fundamental need for empathy toward their fellow human beings. (p. 125)

Yet somehow, Mom & Dad raised "principled people of good will."

A New View of Intelligence

...refining what we mean by intelligence in light of this understanding of development. Intellectual capacity is more than mastery of impersonal cognitive tasks... or analytical thinking. Nor does it seem helpful to regard each separate talent or ability as a special type of intelligence. Our definition of intelligence... should focus on the general process whereby individuals reason, reflect, and understand the world. (p. 125)

Do away with the concept of savants!

...two interrelated capacities: the ability to generate intentions and ideas, and the ability to put these creations into a logical or analytical framework. ...successful mastery of the developmental stages we have outlined. The extent to which these abilities can be applied in different areas of life determines the breadth of a person's intelligence. (p. 125)

Intelligence... can probably never be reproduced artificially. Computers may be able to perform certain cognitive operations, sometimes even more effectively, and certainly faster, than humans. But unless they acquire the ability to experience and react to emotion, silicon chips will be unable to exercise intelligent discrimination. (p. 126)

So Data has an "emotion chip", it's just not as complex as the one he had in Nemesis or the episode of TNG with Lore etc. (Also maybe in First Contact, but I haven't spoken with my brother the expert on the topic.)

...two different approaches to "educating" computers that to some extent parallel different learning philosophies are both experiencing limited success. ...Douglas Lenat of the University of Texas at Austin, attempts to program into a huge computer all the factual knowledge and rules of human behavior and conduct in the hope of producing a superior intellect. Rodney Brooks at MIT, taking a bottom-up approach that is closer to the humanistic tradition but is nonetheless materialistic, designs computers that are able to learn from experience. Thus far, both approaches have failed to reach the levels projected for them, and in creative reasoning they can be outdistanced by a young child. (p. 126)

What separates human intelligence from that of computers... is the fact that we possess a nervous system capable of - indeed, specifically designed for - generating and evaluating affect. Thus, even though machines may "see" in the sense of responding to visual stimuli or "hear" auditory ones or "think" in the sense of manipulating symbols, they do not have the capacity for reflective consciousness, as opposed to simple physical registering of light or sound waves or other signals. Consciousness and all the powers it entails grow out of the reactivity of our cells, the myriad affects this reactivity generates, and the integration of these by the nervous system. (p. 126)

...we have tended to underemphasize the generative aspect of intelligence, the creation of intentions and ideas, instead focusing more on how intentions and ideas are put into a frame of reference. ...most modern cognitive theorists have dwelled primarily on the analytical rather than the generative aspects of intelligence. ...enormous stress on teaching children to organize and order their ideas. ... In children with autistic symptoms or environmental disadvantages, my colleagues and I saw that unless we mobilized these generative capacities and helped the children learn to form intentions and ideas, their thinking remained overly concrete, sterotyped, and repetitive. When we create natuarl situations of strong affect, children were able to generate desires and images and to be creative as well as logical and reflective. ...more emotionally interactive styles tended to produce thinking that was both more creative and more abstract. (p. 127)

Perhaps we have paid less attention to the generative aspects of intelligence because we haven't understood the processes involved in their production. Because ideas emerge from affects and intentions, it is quite possible that the dichotomy between reason and emotion is partly responsible for our oversight. (p. 127)

People often contrast intelligence, by which they mean a high level of cognitive ability, with talent, which is usually defined as outstanding facility in an expressive field. ... Fine differentiation and a grasp of relationships are the essence of intelligence, regardless of the field. Both intelligence and talent imply that an individual is skillful in certain areas of endeavor. But intelligence requires something more. It goes beyond talent in that it involves a systematic understanding of why and how things work... (pp. 127-128)

Intelligence also requires the ability to express that understanding symbolically. Thus, not only can the person perform well; she can explain how and why she does what she does. (p. 128)

An intelligent explanation, however, needn't be given in words. (p. 128)

Standard IQ tests measure intellectual aptitude through limited linguistic, mathematical, and spatial tasks. Many areas of intelligent activity are not represented. (p. 128)

Nearly every field of human endeavor thus offers some scope to the exercise of intelligence, though not all in the same way. ... True intelligence in any field requires deep and extensive knowledge and experience. (p. 129)

Some fields, to be sure, may afford intelligence only minimal scope. (p. 129)

Intelligence testers generally concentrate on cognitive skills in certain symbolic fields. Conventional testing thus equates high intelligence with the ability to do well at manipulating words, numbers, or shapes. ...since intelligence arises from affect and not merely from cognition, no true definition can limit it to so narrow a range of abilities. (pp. 129-130)

The genuinely intelligent person has breadth as well as depth; she is intelligent across a range of activities and interests. (p. 130)

The prevailing definition of intelligence, and all the life-determining decisions based on this understanding, cry out for radical revision. (p. 130)

Greenspan obviously needs some lessons in grammar... he keeps using the wrong verb tenses.

Rather than measuring intelligence with a single cognitive yardstick, we must find ways to evaluate it in terms of its depth and breadth. Some people evidence creative analytical ability across a wide range of intellectual endeavors. (p. 130)

A full description of intellect would also consider the depth of an individual's creative and reflective capacities. The ability to generate or create ideas, then to reflect on them and organize them into a logical framework is, we believe, an essential part of a definition of intelligence. ... Mastering the content of a field, along with a great deal of experience using it, gives one the opportunity to attain far greater intellectual depth in a discipline than is possible for someone just starting out. (pp. 130-131)

Intelligence also includes reality testing. ... The formation of a sense of reality and the ability to reason logically is... fundamentally an emotional rather than a cognitive process. (p. 131)

It is the sense that inner affects and intents can produce affects and intents in others that establishes the psychological boundary necessary for the sense of causality and, later, reality testing. (p. 131)

When individuals have significant dysfunction in the physical makeup of their nervous systems or in their family and interaction patterns, there is a higher likelihood of problems in testing reality. (pp. 131-132)

Our appraisal of reality is in part, therefore, a subjective emotional operation in which we call on our common biology and set of experiences to elucidate a shared sense of reality. (p. 132)

Intelligence in its most general sense is based on our ability to connect affect or intent to our growing ability to sequence behavior and symbols, both verbal and spatial. ... As our affects connect with more complex abilities to sequence symbols in dynamic, problem-solving situations, we may be able to see varying levels of intelligence more clearly in other members of the animal kingdom as well as in humans. (p. 132)

I see this in Katonia & Napoleon keeping each other company since Princess died.

Intelligence reflects the mind doing its most important work. ...understanding the common origins of basic mental abilities provides a new way of viewing many of the challenges facing our society. (p. 132)

According to this, I come from a family full of highly intelligent human beings. I think that the breadth of our interests and expertise is indicative of this.

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Another Year...

2007-08-21T20:03:00.000-06:00

Today marks my eighth year of working with autistic children. It's been quite a year, and quite a journey.

In the past year, I've developed friendships with a number of autistic adults. (Well, I don't know if they'd call me a friend, but I consider them such.) I organized a letter-writing campaign about Bill C-304. I was diagnosed with clinical depression. I started to learn a lot more about my own personal communication difficulties.

AutCom is coming up in October, and I am excited to attend. There are so many presenters with whom I have conversed online, and I am looking forwards to meeting them.

I am hoping to start a magazine by, for, and about autistic people in the next couple of months. The possibilities in this venture are unlimited, and that also excites me.

I have finally decided that it's about time I started working on my own book about autism. Something that gets into things from the point of view of a 'professional' who doesn't want to eradicate autism from the face of the earth.

The past year has been one of amazing growth, to be sure, and the coming year promises to be one of many changes and more growth. I hope I can live up to my own expectations.

I've come so far since August 21, 1999 - both personally and professionally.

I have confidence in myself.

I am taking control of my life.

I am largely content with how my life is progressing at the moment.

I believe fully in the individuality and importance of autistic people to society.

I refuse to participate in the attempt to suppress a person's identity "so he can fit in better".

I'm not afraid to speak up about what I believe - I have courage.

Some of you out there have known me for a long time. I'm just curious... how have you seen me change over the years? Even if you've only known me since I began this blog, have you seen positive change taking place? And what sorts of things do I still need to work on?

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See, they just keep growing. And developing.

2007-08-08T23:31:00.000-06:00

I babysat A & D tonight. I don't know if you remember them, but I have written about them before. A is the older boy, and is a non-speaking autistic who has a DynaMyte. D, his 3yo brother, talks enough for them both, let me tell you.

I think the last story I told about them was the night D chose to drop videos and DVDs between the bed and the wall after A was asleep.

Tonight, they had dinner early and had their bath early, so I wouldn't have to deal with their bath (you get sopping wet if you bathe those boys). Normally, they have a snack and watch one DVD after their bath, and then it's bedtime. Tonight, their DVD (Veggietales) ended an hour early, so we put the TV on Treehouse (small children's TV) and played a tickle game.

A was right in there with D & I. It's the first time he's really been interested in playing with us. They were taking turns jumping on me and having me tickle them. Of course, no sound coming from A besides his throaty giggle, but D was chatting up a storm.

A would come up beside me and turn a little bit sideways, bouncing on his toes and leaning in. That was his signal (which I recognised immediately, though I hadn't seen it before tonight) that I should tickle him.

That's just the way it is, you see.

A may never speak, but he can certainly communicate. And he's growing and developing, even without ABA (he has a play-based home program).

Funny how that works.

Body Awareness

2007-08-06T18:10:00.000-06:00

One of the things people talk about a lot in relation to autism is body awareness. There are at least two types of body awareness that I know of, and I'm going to talk about both in this post.

The first is "The Body in Space" - how people perceive their bodies in relation to the world around them. This has to do with personal space as well as how we relate to things in our environment.

The second is "Internal Functions of the Body" - how people perceive the way in which their bodies signal various needs. This has to do with everything from being hungry or thirsty to needing to go to the bathroom.

The Body in Space

I used to have a large bruise on the outside of my left leg, just below my knee. I found it when I was showering one Friday last month. It took two weeks to disappear, and I still don't remember how I got it.

At the same time, I had a much smaller bruise on my right arm, about halfway between my wrist and my elbow. That's another bruise I don't remember getting.

I don't remember most bruise-causing incidents. I remember how I popped the cuboid bone out of place in my left foot, and I know how I got most of my scars, but random bruising just isn't memorable for me. I think it's probably because I often bounce off door frames when I am walking through a doorway, and I walk into tables and chairs with startling regularity.

I've been accident prone all my life. I can fall off sidewalks and trip over nothing. I think for me, it came part & parcel with being tall and gangly and having ADHD. I just don't have great spatial awareness. (This is very true of me and most things; I can't pack boxes very well because I always overestimate how much stuff will fit into a given amount of space. How I manage to park without hitting anything is beyond understanding.) My body awareness - that is, my external body awareness - just isn't all that great.

I've watched other people, those non-klutzes. I love ballet, and I saw Karen Kain's farewell tour when she came to Calgary many years ago. Other people seem to be able to walk around corners without hitting their head on the wall. (When I was twelve, I was used to it.)

What is really interesting is that, at the height of my klutziness, I could pick my way through a tight crowd without connecting with anyone else. In school, I was able to wend my way through the halls while reading a novel without walking into anyone or anything. And two weeks ago, I caught the leg of the 11-month old toddler I was babysitting just as he began to slide head-first down the stairs we'd been navigating together.

My injuries seem to be mainly caused by my lack of awareness of where my body is in relation to things. It seems that I know where my body is in relation to people just fine.

Internal Functions of the Body

My awareness of my body's internal functions is much better than my awareness of my environment.

I know when I need to go to the bathroom. I know when my period is about to start. I know when I'm hungry. I know when I'm thirsty. I can tell the difference between anxiety and high stress levels.

Of course, the other side of this is my executive dysfunction, which means that while I am aware of my body's internal functions, I do not always react appropriately to them.

I will put off going to the bathroom until the very last second. I regularly forget to eat, and I definitely don't drink enough fluids. I don't take breaks when I should. About the only internal function that I actually deal with correctly is my period - and that I am paranoid about, so I will often start wearing panty liners days before I actually begin to bleed.

There are a lot of different things that go into body awareness. It's so important to understand this. The reason a child doesn't potty-train at the typical age is not necessarily because of a lack of understanding body signals, just as the reason a child continually walks into things isn't necessarily a problem with gross motor skills.

And I do wonder, if we took the time to actually figure out why these things were happening, how these children would grow up.

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Non-standard non-autistic communication?

2007-07-23T11:41:00.000-06:00

I remember when I first stumbled upon alt.support.autism and started posting there. I didn't have my ADHD dx yet, and I was wondering (yet again) if maybe I was AS. It was wonderful to find a place like asa, where most of the regulars were autistic and understood what was going on with me when it came to sensory processing, socialization, stress, anxiety, and so many other things I have difficulty with that neurotypical people just don't.

In particular, I found it refreshing and freeing to be able to post there and say what I meant - and have it understood as being exactly what I'd written. ASA, for me, was a community of people who, as a general rule, didn't write with subtext and didn't expect me to be writing with subtext. And at that point in my life, it was precisely what I needed in order to find my best communication style.

Of course, there were personality conflicts; I don't think it's possible to have any kind of a group of people without some disagreements. Most disagreements were logical in nature rather than emotional, though, and that, too, was a welcome change from "the world", where disagreements nearly always descend into the personal realm of insults and emotionalism.

Every once in a while, someone would read into what someone else had written, and then there was a general group reminder posted, that pointed out that on asa we rarely use subtext; if we want to insult you, we will be blatantly obvious about it. What we say is what we mean, and if you are offended by something we don't explicitly say, you may well be putting meaning into the words that isn't actually there.

How tremendous! To be able to interact with people who communicate without subterfuge, who say what they mean, who don't mince words. Sure, I got offended a few times. But I quickly learned not to take things as personal attacks, because they rarely (if ever) were. It's not that I developed a thick skin; more, I became used to the communication style.

The thing is, this straightforward communication style is very natural for me. I love words, and I love playing with them, but generally I, also, say what I mean. I just tend to be rather "purple" about it (as Mr Carpenter would put it*).

I have read a lot of criticisms about the Internet, and how the lack of body language makes it harder to know what a person means. For me, it has long been a simpler way of communicating. Writing is my passion, but it is also the best and easiest way for me to express myself accurately. When my voice fails, I can usually write (though occasionally that fails me, as well - that's when music or art saves me).

I have noticed, over the years, that toss-ups, arguments, and disagreements are most likely to occur between neurotypicals, and that these misunderstandings tend to be emotionally-based. It seems that the blunt, non-subtexted communication found in most truly autistic communities is a guard against these sorts of blow-ups.

Of course, autistic people are not immune to emotionally-laden discourse, and even the most patient will lose their cool from time to time. But what I have found most interesting is that often, if there is a disagreement that becomes (or begins) emotionally-based, it is due to one or both people forgetting that they are not interacting with neurotypicals.

I do this, too, when communicating with autistic people online. Because my offline life consists mainly of interactions with neurotypical adults, I sometimes forget that autistic communication is so much less complicated. This usually doesn't happen with those autistic people I consider friends - those whom I have known for a long time, whose communication style is part & parcel of how I perceive them - but with those whom I have just met, or whom I do not interact with regularly.

And I do think that it happens, perhaps understandably, that autistic people sometimes think that I am using subtext when I am not, simply because I am not autistic. When this happens, I am always taken by surprise. I have become used to having my words taken at face value by autistic people, probably because I spent so much time on asa to begin with.

But my writing style has also evolved since I first began visiting asa, and I think that perhaps the wordiness - the "purple" - makes it more difficult to see the meaning I am stating so clearly (to my mind). So I think I must begin to "de-evolve", to return to the point-blank, straightforward communication style that used to be a hallmark of my writing.

*Mr Carpenter is the wonderful teacher in L.M. Montgomery's Emily books who tells Emily when her writing is too full of beautiful words and needs to be cut up - it's too "purple".

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Let's give them something to talk about...

2007-07-17T09:19:00.001-06:00

A recent discussion elsewhere has gotten me thinking about some of the things we (those of us with "disabilities") talk about a lot. We sit around and bitch and moan about how "nobody understands" what it's really like to have whatever diagnosis we've been saddled with. But we don't step out and do anything about it. Then, when our allies try to do something to help with the situation, we gripe and complain about how "it's the wrong thing" and actually makes things worse. But we don't offer any ideas for replacing or fixing it.

It seems to me that perhaps we are all very used to being oppressed. And while we don't like it very much, having that change is really kind of frightening.

I just finished writing an article for a local publication (I'll provide more information once I'm sure it's being published) about the Friend 2 Friend Social Learning Society, which is based in BC. The Society gives presentations in schools about what autism is and how everybody is different - we all have different kinds of minds - and that it's okay to be different, we just have to allow for those differences.

With children aged 3-10, they do a puppet presentation and have some hands-on time with the puppets, etc. Ages 10-18 get to play a sensory simulation game and do some other activities that engage everyone. At the end of these presentations, the students and the teachers all come away with a better understanding of where the autistic child is coming from; at the same time, the autistic child often has realised that he's not broken or defective.

The sensory simulation game is what started the discussion I mentioned at the beginning of the post. I will share my side of the conversation; the other person involved may choose to reveal themselves in the comments here. My goal in posting this is to open up discussion and perhaps find some new methods, ideas, and solutions to the problems mentioned in the passages I am about to quote.

I agree with you 100% about the need for educators to have an excellent knowledge of autism. The problem is that there is no real way to get that knowledge at this time, save doing the kind of thing I and others like me are doing: getting out there and learning directly from autistic people what autism is and is not. The books don't tell us what we need to know, and the "experts" don't know what we should know, either. So, we need to change that. The best way that I can think of right now is to get the correct information into the hands of the general public, not merely into the scientific journals. Yes, science is absolutely vital, and all research about autism needs to be ethically sound, but if non-scientists do not have access to accurate information, we can't expect the changes we're working towards to really gain any kind of hold on society.

I also agree about disability simulations, and I've read the article on Ragged Edge before. At the same time, we need to actively present people with functional alternatives to these sorts of things. I remember, when I was doing that one term of music therapy, we had a course about physical problems, and we all had to take some time during one of those classes to use wheelchairs and braces and crutches. For me, it wasn't one of those "enlightening experiences" people always talk about. It was interesting, and a learning experience, but I didn't for a second believe that a few minutes in a wheelchair gave me any inkling of what it would be like to be a paraplegic. The problem with all of this is that non-autistic people are looking at autistic people from the outside, and autistic people are looking at non-autistic people from the inside, and it is extremely difficult to describe "what it's like" to be something that is simply the way life is for you.

For myself, there's a song that plays occasionally on the Christian radio station here that has a very frenetic pacing to the background music. The words also go very fast. I commented one night to a friend that this song "is what my brain is like", and she laughed. It is incomprehensible to non-ADHDers - they just can't figure it out. What we need is to find a way to describe things that put everyone on the same playing field.

For example, one of the kids I babysit is extremely sensitive to gluten. When he eats it, he gets bad diarrhea. We call it "goopy poop". One day when I was over, I was having stomach problems (I'm lactose intolerant, and I think I had too much milk products that day). He got testy with me about how I was always going to the bathroom, and I was able to tell him that I was feeling the way he always did when he had goopy poops. He understood after that, and there was no more complaining.

To my understanding, the Friend 2 Friend Programs talk more about "differences" than "difficulties". I am working on changing my language, as well, though it is difficult for me to do so when a lot of those differences we see in autism are also differences I myself have dealt with all my life. I know, first-hand, the difficulties I have faced in my life as a direct result of the way in which I perceive and interact with the world. The thing I am still working on understanding is that those difficulties were (and are), by and large, more a result of my living in a world that is not designed for ADHDers to function well in than it is a result of my ADHD.

[snipped paragraph that is not relevant]

Getting back to the sensory simulation stuff, it's impossible to simulate perceptual differences without simply affecting the sensory organs instead. As such, I don't think that particular objection [that sensory simulations are bad because autistic sensory processing is different at the perceptual rather than the sensory - at the organs themselves - level] to the simulations is valid. The objections listed on the Ragged Edge page are absolutely valid, as often disability simulations do result in that "inspiration" thinking that is so ridiculous and false. Coping mechanisms abound, and those make our lives as adults easier than the lives of the non-disabled who are pretending for a little while.

Cool facts are great, but we need to reach all learning styles. Some people learn by doing; some learn by seeing; some learn by hearing; some learn in various combinations of the three. Making the learning fun by turning it into a game also helps get the kids involved. As the programs stand currently, they are developmentally appropriate and engaging for all children. There is always room for improvement, of course, and that is where speaking up with ideas for those improvements comes in.

So, how do we teach those cool facts about autism in a game format? It needs to be appealing to kids ages 10 and up, and it needs to have a physical component as well as a visual and auditory component.

And to make it more clear:

...How do we teach children cool facts about autism and make it fun and engaging for all learning styles?

...I think that the process of discussing the problems I brought up is how we will find solutions to those problems. Refusing to talk about them at all just ensures that the problems continue.

The points I raised:
Educating the general public is the best way to change society; the problem is that the correct information is difficult to lay hands on for people who are not scientists.
It is impossible to explain to someone "what it's like" to be something you've always been, because that is "normal" for you and you have no reference point for their "normal". Finding common reference points is the best way to render an equal playing field. The problem is finding those common reference points and then figuring out how to explain the differences.
...

I'm not saying we should continue doing disability simulations until we find something better. I'm saying we should find something better now, so let's talk about it and make the change.

I'm not saying that some education is better than no education, so let the incorrect information go out into the world anyway. If I really believed that, I wouldn't be here at all. I'm saying we need to find a way to get the correct information out there now, so let's figure out what to do and do it.

So, any ideas? How do we change these things? What are good experiential alternatives to disability simulations? How do we get the right information out there?

Conversations.

2007-06-18T21:51:00.001-06:00

"How old do I have to be to get a job as a waiter?"

"I think fifteen or sixteen."

"Cool. Can I work at Boston Pizza then?"

"Maybe, but they have alcohol, so you might not be able to do that until you're eighteen."

*****

"Hit it, guys!"

"I hit it!"

"Hit the ball!"

"It's not a ball. What is it?"

"It's a puck."

"That's right, what are we playing?"

"Air Hockey! Hit it guys!"

"I can't, it's too far away!"

*****

"Wal-Mart has Dora slippers, and Bob the Builder slippers, and Spider-Man slippers."

"Really?"

"Yes. Why do they have them?"

"Because people like to wear them."

"Yes, little kids like them. Why do they wear them?"

"To keep their feet warm."

"I don't like slippers."

"I know."

"The slippers have soles."

"Yup, they do."

*****

Conversation #1 was last week, with the now-ten-year old older brother of the twins. That's the kids I babysit on Tuesdays after school. His birthday was yesterday, and we were talking about when he's going to be a teenager. It astounds me, the things that come out of his mouth; he talks about whether or not certain video games are appropriate for his younger siblings to watch (the twins are six), and he uses those words to do it. He is an incredibly smart kid. And has no diagnosis save Developmental Coordination Disorder.

Conversation #2 was today, with LM, the twelve-year old autistic girl I met this evening. Her mother is going to check my references, and then I will start babysitting for them on occasion. After I talked with her mother, LM and I played air hockey for a long time and then we played with a beach ball. She loves music, puzzles, balls, and air hockey. She talked constantly, always communicating something. I could tell a lot of it was scripted, and her pronouns were reversed, but once I caught on about the pronouns I was able to simply respond as if she'd used the correct one when making a statement or asking a question about "you". Before I left, I asked her if it would be okay with her if I came over and played again another day, and she said "yes please". Her mother said I was great with her.

Conversation #3 is characteristic of the conversations I have with BW (who is twelve) when slippers get on his mind. He has a phobia of them, which I accommodate by warning him and avoiding stores that have slippers in them. He can't tell me why he's afraid of them, just that they have circles on the bottom and that the circles are on the soles of the slippers. I've tried explaining that they're like shoes for indoors, but that hasn't made an impact. So, we simply avoid slippers as much as possible.

There are other conversations I have that aren't as easy to reproduce here. I converse with autistic adults on a regular basis, and consider a few of these to be my friends. Not all of these friendships are online-only, though they do generally begin that way.

I enjoy my relationships with all of these people, children and adults, autistic and non-autistic. I especially like talking with them and learning who they are and how they think about and relate to the world. Autistic or not, everyone has a unique approach to life, and learning about those differences enriches my own life.

By THE WAY...

2007-06-10T13:28:00.000-06:00

This is one of those occasions on which my faith intersects with my advocacy.

I went to church this morning, as I do on Sundays, and my priest's sermon was incredible. He usually provides a handout with fill-in-the-blank statements on it, and then there is a PowerPoint display to give you the words to put in the blanks as he goes. I'm going to share the handout, then my thoughts as to how in the world this is pertinent to this blog.

TITLE: By THE WAY
TEXT: Luke 7.11-17
June 10, 2007
Soon afterwards he went to a town called Nain, and his disciples and a large crowd went with him. As he approached the gate of the town, a man who had died was being carried out. He was his mother's only son, and she was a widow; and with her was a large crowd from the town. When the Lord saw her, he had compassion for her and said to her, "Do not weep." Then he came forward and touched the bier, and the bearers stood still. And he said, "Young man, I say to you, rise!" The dead man sat up and began to speak, and Jesus gave him to his mother. Fear seized all of them; and they glorified God, saying, "A great prophet has risen among us!" and "God has looked favorably on his people!" This word about him spread throughout Judea and all the surrounding country.
Luke 7.11-17
By THE WAY, tough questions are allowed.
God is big enough for my questions.
By THE WAY, Jesus looks out for the lowly.
and by doing so he was pointing to the Kingdom.
For Jesus, Kingdom ministry was among those who had no voice.
By THE WAY, this story isn't here for my enjoyment, it is here to make a difference.
How close am I to the Kingdom ministry of Jesus?
Am I prepared to spend time with the kind of people Jesus spent time with?
How do I point to the Kingdom by what I say and by what I do?

"THE WAY" is capitalised this way because we aren't talking about the phrase "Oh, by the way..." - we're talking about Jesus on his way to Jerusalem. More "the Way" of the Quakers, the purposeful path Christ trod, than an afterthought.

As a Christian, I find it disturbing when my fellow believers turn away from, or (for whatever reason) don't think that the inclusion of those who are different is important. It actually bothers me that we volunteer for stop-gap charities but don't actually do something tangible to make it so that the charities are no longer necessary.

But let's look at why this is pertinent to this particular blog - why I'm not just popping it onto my God-blog as a point of interest.

By THE WAY
- If the Way is something good, something great, then it may be a difficult path... but it will be worthwhile to follow. I think that our way (or, at least, MY way) is one that leads to true acceptance and inclusion of all diversity.
Tough questions are allowed.
- I think it is important to ask the questions in our heads and in our hearts; it is just as important to understand that questions are not necessarily going to be answerable at the same time as they are probably not (usually) malicious in intent.
- Questions are really important. We should always be questioning ourselves and our purpose. Why do we do what we do, and are we working towards our goal effectively or not?
Jesus was all about helping those who had no voice.
- As a widow, with no male heirs, that woman was without status. Jesus giving her back her son gave her status in the community again.
- The phrase translated as "he had compassion" literally means that "he felt her pain in his gut" (or something like that). Jesus took on the sorrow of others and helped them.
Jesus spent time with people nobody else wanted to spend time with.
- People without status, people who were looked down upon, "unclean" people. And he didn't do it because he felt sorry for them. He didn't do it so other people would like him better. He didn't help people to get brownie points. He did it because he cared about these people and he felt their pain. He knew them, and he loved them, and he wanted them to have better lives.
If we are working towards a goal, our words and actions need to point towards that goal.
- Infighting is going to happen. We don't want to coddle people, but we don't want to hold them to higher standards than other people. Even when unspoken, those standards create unnecessary pressure.

I don't think that having an argument about something (as happened recently here on the Hub) is the end of the world or the end of the movement. I think it points to a greater need for self-examination. We all need to be aware of our purposes and our goals, and be sure that we are really working towards those purposes and goals in the most productive manner we are able.

Everyone has different causes that tweak their social justice metre. My cause is autism rights. Overall, I believe that diversity is an important and vital part of our existence. Without diversity of all kinds - sexuality, gender, race, religion, neurology, etc. - we lose something of our humanity.

Maybe what I'm saying here doesn't totally jive with all of my readers. The religious overtones of it may grate against your spiritual sensibilities. The analogy isn't perfect. But I was impressed, as I sat and listened to the sermon this morning, with the importance of continuing what we are doing - continuing to work towards this goal of acceptance and understanding - even if we feel we are doing it all alone.

"People are always so boring when they band together. You have to be alone to develop all the idiosyncrasies that make a person interesting." Andy Warhol

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Resistance is never futile.

2007-06-04T13:13:00.000-06:00

I am still horribly behind in my reading of the Hub blogs. I have all the blogs I like to read on RSS, so they're downloaded every day. This means that I don't have to read them unless I have the energy... which means that I get rather behind if I have a bad day or I'm out late or I get sick or I go away for a few days. And I'm behind right now.

But I've been reading about the current situation, and I thought maybe it was time for me to weigh in on the topic, as a non-autistic ally who's been questioned more than once about her advocacy.

Estee has written an excellent post that references Phil Schwartz' essay about allies. I'm going to talk about the essay I was referred to (referenced in Phil's essay) when someone was trying to convince me that I couldn't be an autism advocate because I was NT (this was before my ADHD dx).

What is good about this essay is that it identifies three types of pseudo-allies, and it describes the difference between a pseudo-ally and an ally as having to do with power dynamics (something Joel has recently discussed). The other good thing about this essay is that its author points out that people who are members of the population in question can also fall into these patterns. In other words, it's not just non-autistic people who can be considered to be pseudo-allies.

I was first introduced to the ally essay back in early 2004, when my e-mail address began with "treatautism", and my signature file included the job title of "ABA/IBI Therapist". The idea that someone who made money off of autistic children could possibly be a true ally was reprehensible to a few people (and confusing to a number of others). This is one reason why I'm pleased to be able to limit my autism-related job title to "Respite Worker".

As jarring as it was to be told off "in public", the essay itself was eye-opening and helped shape me into the advocate I am becoming.

The Missionary gets points for helping us, but the problem is that they are often helping us their way. They get points; we get used. Remember: Nothing about us without us!

The Vulture exploits us, often making money off of our needs, our art or our lack of power. When a Vulture makes money off our art, it is often more money than we make off of it. The Vulture started multiplying at an incredibly fast rate after the passage of the Americans with Disabilities Act.

The Do-gooder is motivated by a conscious desire to help the less fortunate and a sub-conscious desire that is patronizing and condescending.

We need allies and are grateful for the true allies. And, some of our best allies started out as pseudo-allies. Invariably, talk of this type produces the question of “How can I tell if I’m a true ally or a pseudo-ally?” Usually, it is a true ally asking this question, because the pseudo-ally often doesn’t even have a clue that this problem exists.

The answer is rooted in power dynamics. Here’s one clue: If someone appreciates your work and leaves you feeling powerful, they are probably an ally; if they leave you feeling grateful to them, they may be a pseudo-ally.

Where is the power in an organization that presents artists with disabilities? Is it all in the hands of non-disabled people? Are there board members, staff, and advisors with disabilities within the power structure of an organization?

ON THE QUESTION OF ALLIES
© 2000, by Aprille Annette

In a comment on the post I linked to by Joel, he notes that "I’m hoping there are some allies who haven’t thought about these issues, haven’t seen themselves in a position of power, but now recognize that there is some power dynamics at work and that they’ve got to be extra-careful to make sure that doesn’t get used in a bad way, certainly not used against autistic people, and certainly not used as a substitute for autistic people."

I remember being that ally. The one who hadn't thought about these issues. The one who didn't realise she had power. And you know what? It's distressing to be told you may be a "bad person", especially if you (as most people do) like to think of yourself as a "good person".

The thing is, criticism (even if not levelled at us tactfully - face it, tactful criticism rarely get the point across properly) should give us pause. It should make us look at ourselves carefully and do some soul-searching. We should all - all of us non-autistic wanna-be allies of the autistic rights movement - be carefully ripping apart our own preconceived notions of who and what we are about, so that we can properly represent ourselves and our fellow allies (autistic and non-autistic alike) when we are called upon to do so.

Having said all of that, I am fairly sure that I am, in fact, a true ally.

I do my best to consult my autistic acquaintances whenever I am considering a new undertaking. Even when I have already begun something, I seek out autistic people to join me in the effort, and would generally prefer not being in charge.

I make no money off the needs of autistic people save for babysitting, and that isn't an autism-specific kind of thing (I babysit non-autistic children, too!). While I do hope to one day become a published writer, I hope to do so as a novelist rather than through writing about my experiences with autistic children. But even then, it would be my life I was writing about, and I would spend more time talking about how working with the kids I've met over the years has impacted my understanding of myself than I would about the kids themselves.

And I truly hope I don't come across as condescending, because that's not something I like to be - even when I'm talking to small children, I may simplify my language, but I don't talk to them like they're stupid.

My goal, in all that I do, is to open doors so that autistic people can walk through them and get the changes made that need to be made. I accept criticism when it is given; I use what I can and discard the rest. Sometimes I might feel attacked, but I am usually aware that I'm not actually being attacked when I am criticised. Then again, I have years' worth of experience interacting online with autistic people, so the general communication style (which is more comfortable for me to begin with) is not usually grating for me.

As ABFH recently pointed out, Jews began the NAACP. Why? Because "the Jews who got involved in the struggle for racial justice knew all too well that they, too, could easily fall victim to the popular ideology of Aryan supremacy. They understood that when society becomes more open and accepting of human differences, everyone's lives are safer."

And that is where I am coming from. I, as an ADDult, know quite well that ADHD and other manifestations of neurodiversity will be next on the chopping block. I strongly disagree with the anti-autism rhetoric that is used in the media and by organizations that purport to speak for us without actually consulting us.

To me, neurodiversity is like all other types of diversity: its acceptance allows for differences and individuality. It keeps life interesting. If everyone in the world were neurotypical, the world would be an incredibly boring place to be. We don't want to become the Borg*. No assimilation for us!

Phil draws heavily on references to the gay community; bloggers have been talking a lot about racism.

But now I'm wondering if those are really good examples - if even the Down Syndrome and Deaf communities should be used as role models for our advocacy. It is possible that autistic advocacy, simply by nature of the types of people involved in the movement, needs to look very different from these other important human rights movements.

I think it is a good idea for people to come together in their advocacy efforts. I also think that it is important that they pursue things in their own way. Where different efforts overlap... that's where we come together and get organized.

So go out, be an individual, and if you happen upon some others who share a part of your vision, work together... but don't try to assimilate each other.

* I apologise profusely for the Star Trek reference, but it just made so much sense and fit so beautifully that I had to use it...

What a weekend.

2007-05-27T17:20:00.000-06:00

The Victoria Day long weekend was May 19-21 here in Canada. That means I had last Monday off from work. So, it was a four-day work week. Keep in mind that I work for a church.

We had a funeral on Thursday, which required a fair amount of organization as well as leaflets.

There was a wedding on Saturday morning and two baptisms on Sunday morning. For a wedding, I do the leaflets, the wedding certificate, the register, and I fill in some of the information on the marriage license. For baptisms, I do the baptismal certificates, the register, godparents' certificates, and I label the baptism candles. This is all on top of my usual Sunday prep work (leaflets, marking the readings, and doing up the prayers list).

Sunset - and a teammate's ponytail sticking out the eye hole of the
toque she's wearing backwards.

Friday night, I did the Relay For Life. This was my first time, and I'm definitely looking forwards to next year.

The Relay For Life is basically a twelve-hour walk-a-thon to raise funds for cancer research. Hundreds of people gathered at the rugby grounds just south of Calgary on Friday evening for the opening ceremonies. The people participating are in teams, usually of ten people each (though my team was only five people), and the idea is to keep at least one person on the track at all times. That's why it's a relay. Of course, with such a small team, we were unable to maintain the one person on the track at all times ideal, but we did our best, and I probably walked for a total of five or six hours, with breaks here and there.

Dinner was provided - beef on a bun, coleslaw, and pasta salad - at 7.00 p.m. At midnight, they served hot soup - your choice of minestrone, chicken noodle, and cream of mushroom - and cake. Breakfast was about to be served when I finally left - pancakes and scrambled eggs, and probably some kind of meat. There were also fruit, yogurt, granola bars, bear's paws, and chips available to snack on. Not to mention coffee, hot chocolate, bottled water, and juice available all night. They looked after us well.

The track was delineated by luminaries, which you could
purchase for $5 apiece, in memory of people. They were candles in
white paper bags with sand in the bottoms and holes punched in
the sides and paper taped on that named the people they were
purchased for.

Walking isn't as hard as you might think it would be. It's also a lot harder than you might think. After a while, my legs started to hurt - from the hip down the knee, in behind - and that was what eventually did me in. I couldn't go anymore.

And then I went to get my things out of our tent, and as I was stepping out of the tent, my right foot caught in the doorway and I crashed to the ground. Which wouldn't have been a big deal, except that I landed hard on my left leg - basically crouching - and wound up spraining both my ankle and foot. So, I've been limping all weekend because my foot hates me, not because I'm sore from the walking (that's actually not a big deal for me, since I often have that sort of muscle pain anyhow).

I got home around 7.00 a.m. and slept for ten hours. Had some weird dreams, too. I won't bore you with them here.

It felt good to go do that on Friday. To put myself out a bit for something that really matters. The money we raised will go towards trying to cure something that truly needs to be cured. Cancer has affected my family: my aunt nearly died of leukemia, and my grandmother had breast cancer that couldn't be treated with radiation therapy because she had a heart aneurism. She had a mastectomy, but the cancer came back, and the aneurism is what eventually killed her.

Sunrise over the bleachers.

Cancer and diabetes are at the top of the list for things I would like to see cured. Diabetes has affected my family, as well: one of my cousins has Type 1 diabetes (he nearly died of it before he was even two years old); and my mother has Type 2 diabetes that developed from gestational diabetes.

From walking to talking to karaoke, Friday night was a time of fun and togetherness. Next year we're talking corporate sponsorship and a larger team. Anyone want to get involved?

Luminaries set up to spell out "HOPE".

A battle of wills.

2007-05-15T21:52:00.000-06:00

I babysat today, as I do on Tuesdays, for the 9yo boy who has twin 6yo siblings (fraternal, boy-girl). If you recall, I worked with the 6yo boy for two years when he was in preschool.

This young man has low muscle tone and Developmental Coordination Disorder. He had to write (print) a sentence for his homework, an idea about the sentence "It will grow". I got to work with him on it.

I sat down with him at the table, and he was incredibly resistant to the idea of even coming up with a sentence. All he had to do was copy what I wrote, but I wanted him to make up the sentence himself. So I got him to put the pencil down and just talk to me about things that grow.

We wound up with a lovely sentence: "Pumpkins start as a pumpkin seed."

His letters were very much all over the place, far too large, and rather messy, but I didn't push him about that - I could tell he wasn't in the right space to really focus well at the time. So when he said he didn't want to write anymore (after only copying the first word), I said we could take a break and go play, then come back and do the next word.

That method worked really well; his printing got steadily better as the afternoon wore on. But when it came time to print "pumpkin" for the second time, we hit a wall.

He wrote "Pump" and then there wasn't room on the page for the "kin". He started writing in the circle on the last "p", which wasn't acceptable. I picked up an eraser and started to explain what I would do. I never erase anything on a child without first explaining what I'm erasing and why. I wanted merely to erase the "ki" so that he could try to fit them in right next to the "p".

He hit me in the face.

I took the pencil away from him and put him into a time out.

He yelled and hollered, but eventually we got to the point where he heard me out and agreed to try it.

When the space wasn't big enough, there was nearly another outburst, but he easily calmed and agreed to redoing the whole "pkin".

Then he kept goofing around with the "k", which eventually resulted in yet another time out and yelling match (well, I didn't yell, but he yelled enough for both of us).

But the word did eventually get printed properly.

Let me note here that the kid, even on this "off" day for printing, does a better job than many of the older autistic children I've worked with on their printing.

So then it was time to get his shoes on so he could join his siblings in their water fight (which they announced to me by soaking me when I went out to see what they were up to).

First we had to find the shoes, which was nearly outburst-worthy.

Then we had to put the shoes on.

"Janna, you put the shoes on me, I can't."

"You've been able to put your shoes on by yourself since you were three. I'm not going to do it for you."

"But I can't!"

Following this statement, he picked up his shoe by the velcro strip, let it hang in midair, and poked his toes at the opening. Naturally, the shoe merely spun in circles and his foot was left without a shoe on it.

This particular "discussion" repeated many times. I kept refusing to put his shoes on for him, but I did give him suggestions like "sit on the floor" ("NO!!!!!!"). Finally I opened one of the shoes completely for him. He came and sat in my lap, told me not to say anything, and put his shoes on.

Happy as a clam, the child proceeded to get a water gun and head outside.

There are a number of possible reasons why this afternoon went the way it did with this kid.

First, I look at him. Was he tired? Was he stressed? Was he just "not in the mood"? Maybe his hand was hurting so the printing was difficult. Was he just trying to get out of doing things on his own so he could get to have fun?

Possibly. Any/all/none are possible.

Next, I look at myself. I have a cold right now, and I'm losing my voice. It's also difficult to hear, so I don't necessarily know how loud my voice is. I may have been too demanding. Meds issues are currently making me dizzy (don't worry, the issues will be sorted out by the end of the week), which makes pretty well everything a tad more difficult for me.

Now, combine the kid's possibilities with my situation, and I think we can easily explain the whole afternoon.

Sometimes, the will I do battle with is my own.

I don't much like battling my own will. I don't often win.

My current battle has to do with my meds situation.

You see, last week I ran out of Cipralex (my antidepressant). If it had been Dexedrine, it wouldn't matter since that's something I can stop and start as needed. Cipralex, on the other hand, is one of those things that is supposed to be tapered off, not stopped cold turkey.

But I'm not out because of something beyond my control. In fact, I simply didn't feel like going to the pharmacy to collect my next 60 pills in time, even though I knew I was nearly out.

If I hadn't woken up with a cold on Saturday, I probably would have figured out that I really needed the pills a lot sooner than today. Instead, I figured that I was feeling dizzy because I had a head cold.

However, my ears aren't really all that clogged anymore, and I'm still completely dizzy all the time (well, if I move). Don't worry, I'm safe driving, just not walking or turning my head - stuff like that. So I came home and looked up withdrawal side effects for antidepressants, and I found out - surprise! - that dizziness is one of the definite joyous things that happen with Cipralex withdrawal.

So tomorrow at noon, I'm going to the pharmacy to pick up my next 60 pills. And then I'm going to start back down at 10mg instead of 20mg, to be safe. And I won't be going off my antidepressants without talking to the doctor first and getting instructions.

How have I gone this long without my medication?

Well, I've been really busy lately. The pharmacy that prescription is at is kind of out of my way.

But those are the excuses I use.

In reality, I wanted to try going without meds. I really wanted to give it a go. I thought I was doing well without them.

So the battle is between my brain that knows I should really still be on them, and that cold turkey is the bad way to stop taking an antidepressant (especially after seven months), and my brain that really wants to be medication-free.

After the near anxiety attacks I've had today, my explosive responses to driving, and the extreme tiredness that I'm just unable to deal with... I'm sure that I need the meds. Today, especially, was a return to the old Janna. The one that had two emotions (besides nothing): angry and happy. Granted, this was old Janna with new coping methods, but it still wasn't ideal.

So, regardless of whether or not I want to be on them, I guess the meds are here to stay.

Which kinda sucks, but I guess this is one battle I've won, in the end.

Or did I lose?

Repeat Performance :: Blogging Against Disablism Day

2007-05-01T20:08:00.000-06:00

It's that time of year again. Time to write about disablism. The idea that all people are created equal, until there's something different or disabling in their makeup. The idea that leveling the playing field by granting accommodations to those with disabilities is somehow making things too easy for the disabled people in question.

I don't look disabled. I'm a tall, full-figured 30-year old woman. I have full use of both arms and both legs, as well as all my fingers and toes. I wear glasses, so I suppose that could be considered a disability in some ways, but vision correction is practically normal in this day and age, so I don't consider it such.

I dress fairly well, though I could stand to lose some weight. Even obesity isn't really a disability, though, and I don't look horribly overweight anyway. I have a full-time job that I'm reasonably good at. Most of the things I would list as problems are things that plague everyone at some point in their lives (money, organization, etc.).

But I have a disability.

Two years ago, I was (finally) diagnosed with ADHD. It's something I've written about fairly often on this blog, because my life experiences so closely parallel those of the autistic children and adults I know.

Shortly after my diagnosis, I began to wonder about requesting accommodations when I went back to school (now a question, as I'm hoping to be able to achieve my dream job without needing to do anything more). What would help me in lecture classes? I made a list, and I do have it somewhere in a box down in my garage (I moved at the end of February, but haven't totally moved into my house yet), but since I'm not sure just where, here's what I expect would help me if I went back to school now - after being on medication and in counseling for the last two years.

A Disc O Sit - a round cushion to sit on that would keep my butt from getting sore but also let me move around as needed without being disruptive.
Permission to video tape (not just audio record) lectures. This is important because I'm more visual than audio.
Copies of the professor's transparencies or PowerPoint presentations. This is important because my hand cramps up if I have to write too much. (Combination of tendonitis and suspected low muscle tone.)
The use of an AlphaSmart to take notes on. I want a simple keyboarding unit rather than a laptop because I know me, and a laptop would let me zone out way too easily. Not by playing games or surfing the web, but by prettying up the notes. This would also help with the hand situation.
A seat in the front of the lecture hall. It's easier to stay on task if you feel like you're being watched by the professor. Funny how that is.
The right kind of pencil grip to use on both pencils and pens in exams. (Again, this helps with the hand issue.)
I don't need extra time during exams, and I don't need a separate exam room. I don't get test anxiety, either. But I don't do well on long-answer tests, because my recall isn't very good. That is part & parcel of my disability, especially combined with my depression. As such, I would really appreciate the chance to show my knowledge of the course material by writing a paper on it. That would be the best accommodation ever. It would allow me to show that I understand and have learned what I was supposed to, while at the same time giving my personal slant on things.

The thing is, most of the things on that list wouldn't really disrupt or disturb the class. Walking in and pulling out the cushion wouldn't bother anyone, and beyond a few odd looks I'd get there'd be no problem. The AlphaSmart, pencil grips, and a seat at the front of the room also would not cause a disturbance.

Getting permission to videotape the lecture might be more difficult, so I may have to settle for an audio recording only. More difficult, but not the end of the world. Getting copies of transparencies or PowerPoint presentations would put the professor out a little bit, I know, but again... that's really not a huge deal in the grand scheme of things. I wouldn't be surprised if other students in the class would benefit from such handouts.

The testing alternative, though? I seriously doubt anyone would ever give me that accommodation. Everyone else in the class has to write the test, so why should I get out of it?

Here's the thing: my brain simply doesn't work the same way as those other students. It never has, and it never will. I have test results from school going back years and years (sometimes being a packrat is useful) that prove my ability to do exceptionally well on multiple choice tests while flunking long answer exams (or at least doing much more poorly than my apparent level of intelligence would indicate I should do).

Work stuff is easier for me; I have to write everything down so I don't forget it, and I get distracted way too easily, but when I'm focused I'm hard to stop, so it goes fairly well - especially when I'm having a good day. I have an office chair to sit on, and in my current office the whole floor is wood, so I can roll all over the place and spin to my heart's content. I use a computer for nearly everything, and I bought a proper pencil grip almost immediately when I got the job, so my hand is safe when I have things that can't be typed.

Everyone has something that they need to be accommodated for. Some people work too far away from home to be able to walk, so they need to either drive or take public transit. This is an accommodation. Some people go to bed at the same time every night and get up at the same time every morning, because they feel more productive during the day that way. This is also an accommodation.

What accommodations do you want/have/need?

Be honest.

Addendum.

2007-04-23T11:42:00.000-06:00

Last night, I babysat SS.

In the two weeks since I was last there, he has begun speaking.

"Hal" (help)

"Up" (when prompted)

"Kee" or "Dee" (squeeze)

It's not a lot of words, and it's all still one-word phrases, but it's the exact same sort of beginning speech we see in typically developing children when they're about one year old.

And he's still the same SS - still loves to climb on things he shouldn't, still has that impish twinkle in his eye, still affectionate in his own way, still goofy as can be.

We didn't watch a Bollywood movie last night, though his mother told me later on that he'd been asking all day for one and she had put him off, telling him I was coming and we could watch one while I was there. Instead, we left the TV on Treehouse, and he actually watched it a fair amount. He also played with some toys - perhaps not "correctly", but it was still play.

I put him to bed at about 10.00 p.m. and he was asleep within fifteen minutes.