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8:30pm January 27, 2012

➸ People with milder forms of autism struggle as adults

autisticinwonderland:

allies-person:

youneedacat:

Some of the article is bunk. And it comes as no surprise to me — someone who follows the research (this is not new) and runs a mailing list for adults with daily living skills problems. (And no it’s not the social skills that cause these problems. It’s the sensory, cognitive, and motor things that cause these problems, that cause also social stuff. Get it right people.) But at least they’re noticing.

And no it’s not that they didn’t get enough early intervention. It’s that the whole standard classification model of severe and mild is total bullshit. If you count severity by actual number of autistic traits, those the most severe do at least a bit better, all other things being equal. What this study says is not that we need to force all autistic toddlers into programs that push them past their limits as far as possible (which may make for worse adult outcomes if you understand what that actually means). It means that we need to open adult DD services to adults with every form of autism based on need rather than IQ or type of autism or so called severity. I get services under the label severe autism that some people labeled Asperger’s need equally much but can’t get.

Basically this is one study that demands the answer, no shit Sherlock. Actually listening to adults rather than treating us like slime could get people to understand much better.

If there were a way to “like” this post especially, I would do that.

I am really fortunate in that my (also autistic) husband and I were recently able to find someone who is going to provide us with in-home daily living coaching for a few hours a week starting this week.  We’re fortunate in that we can pay for it ourselves, as I highly doubt that the DD centers in our state would accept us as clients.  I have wanted this kind of service for a long time and am so happy that it’s finally happening.  Other people who need this kind of service should be able to get it, too, and not just for a few hours a week if more is needed.  I am a firm believer that services should be allocated on the basis of need, not diagnosis or “functioning level” or anything else that’s just superficial.

And yes, it would certainly help if “experts” stopped reducing all of our problems to “poor social skills.”  Poor social skills is not the reason why the dishes aren’t clean.

This would literally be a lifesaver for me. I would much rather be put in a group of people with a range of disabilities similiar to mine. Instead of being put in a group of kids with severe mental challenges, developmental delays, Cerebal palsy and down syndrome.

I mean each person functions at a different level. Yeah, I also have a more mild to moderate form of autism. But I also suffer from varying developmental, intellectual and cognitive delays. I wasn’t even diagnosed with Autism until about thirteen and that really made a huge impact because by the time I got my diagnosis, it was too late for me to get any more help other than the speech therapy. Problem is, I have read my records and I was supposed to take therapy for early intervention and ABA type services but my school was too ignorant to try and get me into anything like that.

Plus, what also makes it harder is the cost and whether or not insurance covers a service. Like, for example, if I did ABA therapy, the insurance could easily refuse paying it because they might think that where I only have a mild form of autism that its not needed. My autism was not as bad growing up as it is now.

I was very eccentric and hyperactive as a child. I had very little social interaction that was odd and not normal for my age. I did have a good set of interests any child would but they were odd. I had litttle to no imaginative play either.

But as I got older, it got worse and now, every little change that occurs causes a huge outburst for me. Environmental stress can send me spiraling out of control to the point where my parents are scared to death.

You ask my parents and they can tell you that my autism has gotten WORSE rather than better.

It’s the same for me. (And the kind of pressure to perform that behavior mod requires actually makes it worse for me.) I was first diagnosed at age 14, since when I was born an autism diagnosis required absolutely no social interaction altogether. (Which… didn’t even exist for the people who did get diagnosed back then, but enough people thought it did. My parents knew I interacted with them. They were mostly worried about my communication when it dropped off at around 15-18 months or so.) These days I’d have been diagnosed by the age of 2 if not earlier. Anyway, when I was about 12 things started getting much, much more difficult for me, although it took people a few years and a spectacular crash and burn before they realized how bad. And by the time I was in my early twenties I’d lost the ability to talk and had practically no ability to take care of myself even with lots of verbal prompting. Fortunately by age 19 I’d been accepted into developmental services and SSI or I’d have been wrecked. At this point I’ve also got a lot of physical issues. I was actually diagnosed (practically the moment my shrink heard about it, since he’d known me since I was a lot younger and watched it progress) with a parkinson-like/catatonia-like movement disorder that basically amounts to a minority of autistic people having lots of already-existing autism-related difficulties getting worse and worse over time.

But there are a lot of reasons why autistic people can have things get more difficult over time, and that’s just one of them. Adolescence and early adulthood seem to be common turning points for that to happen, but some people burn out well into middle age or even when elderly. And virtually nobody is researching this even though from the cross-section of autistic people and families I’ve been exposed to, I’ve seen it happen time after time. Some autistic people think that it might happen especially to those of us who were trying as hard as we could to do things we really couldn’t sustain doing, much like seems to be true of post-polio syndrome. But whatever it is, it happens, it’s real, and a lot of people don’t want to admit to the reality because that would ruin a lot of programs that claim that if they can get a kid to act normal for a few years then their work is done.