Moved the blog.

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!

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?

1. 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.)
   
2. 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

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!

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.

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

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.

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.

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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