Having Joey in Vacation Bible School is a bit of a challenge for my nerves. Not Joey himself; Challenges for ME. You know, my own issues. We all have them. I can see how different Joey is from kids his own age. That can be hard- not because it is a problem, but because I'm a human parent who wants my kid to be happy and have friends. It is also hard because so many folks come up to me, knowing Joey is autistic, and say weird things, like, "You've done great work! He's doing so well!" All I did was drive. Joey did the work part. "Are you sure he's autistic? He seems so normal!" Yes. Yes I am. Um... thanks? "Oh, normal kids do that, too." This is in response to things like having a small tantrum over losing a turn or signs of frustration from not understanding the rules of a game, or something like that. Yes, normal kids have tantrums; excuse me while I intervene before this becomes a meltdown.
They mean well. But they have preconceptions of what autistic people can and cannot do, and Joey isn't fitting those parameters. some of these preconceptions are spread by parents, therapists, and caregivers of autistic kids- and I have even seen some of them on sites written by autistic people.
1. Autistic people cannot lie. They need to stop by my house. Joey's IEP includes taking responsibility for his own actions, instead of trying to foist his misdeeds on someone else. ("Joey, did you just take that toy from Sally?" "No. Andy took it." Andy is no where to be found, and the toy is in Joey's hand, and I watched him take it from Sally...)
2. Autistic people are "uncompetitive." Oh, haha. Joey's latest perseveration is, "I win! I win first!" and "I'm a loser! I cannot win. I lost." Joey likes being good at things, and being better at things than other people- just like other kids.
3. Autistic people cannot be spiteful. Sure they can. Joey sometimes hides toys just so Andy won't have it. He picked this behavior up from Andy.
4. Autistic people cannot be social/they don't like people. There are still doctors in the world who will not diagnose a child as autistic because they are "too social." This is a bunch of baloney. Joey loves people, loves to participate, and is highly social. He may not have the skills to be successfully social, but he gives it the old college try every time.
5. Classically autistic people do not speak. If your child speaks, s/he actually has Asperger's Syndrome. People actually will change a child's diagnosis when they start speaking to Asperger's, as if that is the sole difference between "classic" autism and Asperger's Syndrome. Joey is verbal, but is "classically" autistic, not Asperger's. He remains severely communication-challenged. He has a lot of trouble answering questions or following a conversation. "Verbal" does not mean "not communication-disabled." I think parents don't fight the change because Asperger's is seen as a sort of "autism lite" that is more manageable; there is some psychological thing of "my kid is improving! He's no longer Autistic; he's Autistic Lite!" There are more success stories out there about people with Asperger's, as opposed to people with "classic" autism. The change in diagnosis is seen as a glimmer of hope for people who do not want to be "stuck" caring for their child for the rest of their lives.
As others of these myths rear their ugly heads en masse, I'll let you know. In the meantime, I'm still fighting the "autism is caused by bad parenting" myth and the "I shouldn't have to deal with your disabled kid in public" attitude. Don't like my kid learning to relate to public places? Don't like it that he needs to chew some gum in order to calm himself and navigate the store? Well, guess what: I hate the smell of coffee. I don't go about telling people with coffee breath to get out of my space, even though I find it disruptive and disgusting. Get a clue.