Saturday, December 29, 2007

When My Autism Gets Too Big

[second post today]
I recently found a book my parents got me for Christmas a couple years ago which I really hated. It's called When My Autism Gets Too Big. I thought it could be very useful had they not described it as the child's 'autism' getting too big, but as it is I don't want any autistic child reading this book with the idea of using this to help them.
It reminded me a bit of the common practice among parents of autistic children of referring to a meltdown or something similar as an 'autistic moment'. I protested that once on a listserve for parents of autistic Down Syndrome kids, but was not able to describe the biggest problem with it.
I act more or less obviously autistic at different times. Sometimes I'm upset and self injure, speak repetitive phrases or can't talk. Sometimes I'm happy and I flap and trill. Sometimes I talk intelligently and pedantically about rare syndromes to a person I've just met. Sometimes I avoid looking people in the eye and don't react when they greet me. Sometimes I act fairly normal, sometimes I act autistic in one of the myriad ways that autistics tend to act.
All this time, the underlying autistic cognitive style I have is the same. I'm just in different situations, feeling different moods, making different choices. NTs are not judged more or less NT depending on whether they're chatting with their friends, studying a subject they're interested in, taking a break to listen to music they enjoy, crying or yelling at someone or both, or really excited looking forward to something fun. They're just acting the way that person acts in that circumstance.
And so many autistic children don't really understand what autism is. If you watch videos about 'recovered' autistic children in which they're asked what autism is, a common reply is to demonstrate some of the stims they used to do. 'Autism is flapping your hands like this.' Studies have shown that siblings of autistic children tend not to understand autism very well - for a variety of reasons, autistic children likely have an even poorer understanding of autism than that.
And I hate the idea of a child who doesn't really understand how they are different associating 'autism' with being overloaded. If they think that's all autism is, they will not understand why they have such different likes and dislikes than the other children, why the others don't make sense to them, and why they are so good at some things and not others. If so, what's the benefit of the diagnosis for them?
The biggest benefit of being diagnosed autistic for me, and many other older autistics, is increased self-understanding. But we can search out and understand the information out there about autism, and think critically about it, and keep looking for our answers. Autistic children often can't do this. Their only source for understanding autism is what the adults in their life choose to tell them. And if what these adults choose to tell them is just associating autism with overt behaviors or specific moods, then their diagnosis gives them no help in the difficult task of understanding themselves - a task already made difficult by the pervasiveness of the NT perspective and lack of discussion of the autistic experiences.
I wish they'd taught kids to think of it as, if not overload, then 'too much X', like the standard 'too much birthday'. NT kids, when they are overloaded, are not told that their 'allism' has gotten too big. Instead, people say they've had 'too much' of whatever they were doing. Don't tell autistic kids that autism means overload or stimming or something like that. Make it clear that autism goes deeper than that.

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Blogger elmindreda said...

So true. They're deprived of the cultural context that ought to be their birthright, and that many autistic people seem to find the most helpful and useful thing.

4:04 AM  
Blogger Andrea Shettle, MSW said...

I followed the link to this book and it seems that in the re-print it's been retitled to "when my worry gets too big." I'm guessing, though, that the content is probably pretty much the same (I didn't try digging deeper).

I think your comments here help reinforce why it's so important for autistic children to have some kind of contact and interaction with autistic adults. And ditto for the parents so they will have a better idea how best to take advantage of "teachable moments" to help their autistic children understand their own autism better.

In reading what autistic adults on line say, I am often struck by the big gap in generalized understanding there is between how parents/professionals/others understand autism compared to how parents/professionals/others understand, say, deafness and the smaller, nuanced impact of how that affects daily life and the little things you can do to work around it, accommodate for it, account for it etc. My parent's understanding of my deafness is not 100 percent perfect in every way, but I do remember learning a few coping strategies from them (for example I remember at age 7 asking some hearing adult to write something down so I would understand them -- I think I may have first gotten the idea of using writing as a mode of communication partly from my parents). This is partly because my parents made a point of listening to deaf adults about their experiences from when I was little onwards. But I think it also probably helped that they have had the chance to be in contact with professionals and other parents who ALSO have a fairly good basic understanding because that means they had more chances to pick up things that deaf adults might not have time to communicate to them (there being probably mroe parents wanting to learn than deaf adults able and willing to teach, as in the autistic community). The broader autistic/parents/professionals community does not seem to have quite reached that point yet where certain really basic things (like autism being more than just stimming) are just circulating in the community as "common knowledge" so it can be transmitted to newcomers to the community more quickly. I hope that will gradually improve over time: the US Deaf community has been a cohesive, active force for I think much longer than the autistic community, which probably explains much of the difference. Then parents would have a better understanding not just of autism itself but also how to help their young children (including siblings) understand autism and what it means for them. That will never replace the necessity of having contact with autistic adults, but could be a valuable supplement to it.

I hope this comment did not appear to be too much of a nonsequitor to your post. I know it's not really the point you were trying to make.

Andrea Shettle

7:24 AM  
Blogger stevethehydra said...

I do occasionally say things like "I'm having a particularly autistic day today", but i don't mean by that that i'm "more" or "less" autistic on different days, just that sometimes particular aspects of my autism show more than other times.

I watched a documentary about a specialist school (in the UK) for autistic kids once, with the cringeworthily awful title of "Make Me Normal" (which was actually a quote from one of the kids). This 13 year old girl begged her teachers to "make her normal". In some ways the school looked like it would have been better for many autistic kids than a "mainstream" school, like having an understanding of autistic learning styles - but, from the stuff the kids were saying, they were seemingly being taught that "their autism" was a separate thing from themselves, and an undesirable thing that they had to fight against. I really, really didn't like that encouraged self-alienation - and i think self-hatred and a desire to be "cured" is a logical result of that kind of approach...

4:26 PM  
Blogger Naomi J. said...

Interesting post. I think parallels could be drawn with learning difficulties, physical impairments, all sorts of disability-related things. Non-disabled people have a tendency to try to separate out the 'disabled part' of me, and distance themselves (and me) from it. That doesn't do me or my identity any favours. Accepting myself as a whole, who is disabled as well as a teacher and a committed partner and a proud aunt and a big fan of tea, that's what makes me happy.

4:33 AM  
Blogger Ettina said...

'When my worries get too big' is a variation for children with anxiety disorders. They're mainly aimed at different groups of children.
I had an idea at one point of setting up a pen-pal organization to help parents of autistics get in touch with autistic adults.

2:04 PM  
Blogger unashamed said...

What bothers me is when people don't even want to TRY to understand. My roommate (former partner) has us seeing a therapist that is like this, particularly with me being autistic and it comes out a lot around her because something about her is too intrusive for me so I want to run. I was rocking on the floor doing my alphabetical cities of Michigan and she said I was being avoidant..maybe so but it because something she said actually made me want to run for the door (I did) but didn't leave..instead did the next best thing. I could rant forever about this but I won't.

4:59 PM  

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