When My Autism Gets Too Big
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.