Autism & Me: The Hardest Thing

Yesterday I talked about crashing, today let me just briefly talk about the hardest thing we’ve encountered in raising our autistic son.

He doesn’t look different.

You can tell when someone is blind, or an amputee, has Down’s Syndrome or MS or is in a wheelchair. But my son does not look abnormal.

In a way, this helps. He doesn’t encounter immediate discrimination.

But in a way it works against him. Imagine, if you will, that your child becomes more excitable/stressed any time he or she is in public, the more people, the more stress/excitement. Now, they also have oversensitivity to sound. You decide to go out to dinner at a buffet, because the kids love it and no one can decide on one thing to eat. Except the restaurant is packed. It’s loud it’s noisy, there’s at probably a hundred people all at tables in the same room…And even though your child wants to be there, has been there before and was excited when you arrived he/she is starting to have a problem behaving because there are just too many people and too much noise and your child cannot turn all that stimulation off. (This is another trademark of autism. Essentially they can’t “tune things out” like neutrotypical people can. This leads to amazing powers of observation and recollection of detail, but problems in a lot of other situations.)

They want to behave, but they just can’t because their whole world feels out of control and it’s sending their body and brain into panic mode. You try to talk, to reassure, but it’s not helping.

And the people around you begin to stare. They begin to look at you with sneers on their face. Maybe someone even butts in and tells you, “Control your kid!”

Now to hell with what other people think, but would they be as quick to complain if your child had some obvious disability? And that reaction puts more stress and you and on your child, who usually doesn’t want to misbehave.

This same principal affects how everyone deals with my son. An administrator at his first school outright told the teacher that he wasn’t really autistic, she was just handling him wrong. The same teacher had no autism training and (in my experience) seemed to think that with enough pushing he could be normal. When he had problems with school work she pushed harder. When he couldn’t do it, she assumed he was just misbehaving.

Because he doesn’t look different people always assume he is just misbehaving or being vindictive/mean rather than realizing that he may be just confused and frustrated.

For a long time we struggled to teach him that he was not a bad child. That his problems with using his words and understanding what other people wanted of him weren’t his fault. And that he could overcome them. Self esteem has been a huge issue for us.

I’m very happy that he has been building a good foundation of self confidence this past year. It means so very much to me. And remembering how he looked at me when he didn’t understand something, and had spent the day being told, maybe not with words, but with others’ reactions to him, that he was just stupid or not capable, or he was just being mean…well, that has been the hardest part.