We are moving...

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?

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.

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

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

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

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

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.