Tuesday, April 28, 2009

Are You Aware? XXV: A World of Extremes

When I read articles like this, I often wonder about the extremes our world seems to be pulling in to. And how many of the people I know don’t exist on either side.

On one side, folks who seem to believe that autism is only a deficit, something to be eradicated like polio. Do all of them believe that vaccines or heavy metal poisoning is to blame? I suspect that is not the case. What bothers me about this end of the interpretation spectrum is that Joey would not be who he is without autism. He would be a different person completely. There is something in this idea that denies who autistic people are as individuals, insisting they are actually someone else. That really, really bothers me.

On the other end of the spectrum is extreme neurodiversity. This is the idea that autism is “just a difference” and shouldn’t be addressed at all. This complete acceptance and embracing of autism may seem like a great idea, especially compared to the complete denial of the opposite extreme. However, there are problems here, too. Extreme neurodiversity wants to put an end to therapies such as speech therapy and ABA. If you‘ve ever tried to work with a bad therapist or poorly done ABA, you know why. If you have a therapist who is domineering, rather than supportive, what are you really training the child to do? What does it mean to be “functional”? Do all stims need to be squashed? What about the gifts my child has, the way he sees the world?

Here at Life With Joey, we prefer middle ground, thought, and individualization. This is a middle ground that rarely gets talked about in the media. We believe therapies are tools, and our purpose is to support Joey and provide him with the skills he needs to thrive and appreciate his talents and strengths… which, you might note, is the exact same purpose we have for using tools available for Andy. There are domineering parents in the world, with and without autistic children. If you just dictated to your child what they will study in college, you might what to think about that again- is that really supportive, or are you projecting yourself onto your child? There is a difference between guiding and forcing, and it is important to know the difference when trying to raise children (who will grow up whether you raise them or not.)

So well-done ABA can be a useful tool. Floortime, TEACCH, RDI, pivotal response training, PECS, sensory integration, speech therapy, occupational therapy, physical therapy… tools, not ends. Be aware that the first therapist you come across might not be a good fit. That finding what is right for your child or loved one can take time and work, and lots of research. Not everything is helpful or necessary for every child. Joey didn’t need 40 hours a week of pure discrete trial training. Often being aware of different methods and being able to actively adjust and mesh together different methods and understandings is key to individualizing your approach to your loved one. Don’t just dismiss things out-of-hand; check it out. Pay attention. Document what works.

For us, Joey needed to be able to speak and use language. It isn’t a matter of just putting a keyboard in front of him; he types like he speaks (the processing issue is in putting the words in correct order and tense, not just getting them out of his mouth). He needed to stop tracking in the classroom so he could focus and learn (he can come home and track to unwind all he likes). Yet he is still our Joey, and we wouldn’t want him to be anyone else.


farmwifetwo said...

Stands, claps, cheers... What she said :)

We had the horrible ABA with the little one. We'll stop there.

My children are in the school system, integrated (#2)/mainstreamed (#1) and using http://www.edu.gov.on.ca/extra/eng/ppm/140.html Ont's PPM 140 with great success.... I made certain it was not that IBI/ABA crap we'd had before it. And I am consulted always about IEP's and goals and methods to reach those goals. They wanted in the last IEP to put "child must make eye contact" for the little one and I got it tossed. He does make eye contact, if he trusts you, in short spurts... that's more than good enough for us, it's on his terms only.

We've done extra homeschooling, we've worked on speech, reading, typing, etc. My eldest will be "normal" once he becomes an adult (job, family, friends - as he chooses) but no where has his brain been transplanted or made "normal". He's just been educated and taught independant living skills.

I'd like to say the same will happen for the little one... doubtful... but we'll continue... a little homeschooling, independant living skills, and lots of hugs and kisses.

Everyone is entitled to an education, to learn communication and language using whatever methods/technology that requires. But... they must be treated with respect and to remember they are CHILDREN not "AUTISTIC".


Stimey said...

This was one of the things that scared me the most when I started exploring the autism world. I saw all the division and anger and it freaked me out. Since then, I've found a lovely group of people that occupy that central territory you speak of. And I've also found people who think differently than I do, but who respect that I think differently, and that I respect that they think differently, and that is that.

This is well said.