Thursday, June 26, 2008

Myths of autism

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.

7 comments:

kristina said...

not exactly a restful summer (or "vacation," sigh).

let us know what ensues.....

r.b. said...

Been there, done that. You are doing a great service to just listen as the clueless develop their own mindsets.

We've got to stand up for each other. If you recognize a meltdown...give those parents support! Let me tell you, it feels really good. And the shock on their faces is priceless!!!

Bonnie D. said...

I can relate to all you have said. I especially dislike when people come up when he's right next to me, usually after observing him, and seeing some odd behavior, and asking ME "How old is he?". I usually say "I don't know, why don't he you ask him!?". I know it's snarky, but I can't help it!

AnneC said...

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.

This is one reason why I'm leery of drawing a major distinction between "Asperger's" and "Autism" -- while there may very well turn out to be identifiable "sub-groups" within the spectrum demographic, it is not at all clear to me that everyone who ends up labeled Asperger's is somehow irrevocably and categorically different from everyone who ends up labeled Autistic ("classically" or otherwise, and particularly when you're talking about children, as it is literally impossible to predict eventual trajectories).

The fact that people perceive "autism" as implying lack of hope whereas "Asperger's" somehow implies "greater potential" is a huge problem as far as I'm concerned, as it feeds the myth that you somehow can look at someone and determine exactly how they'll function and present as an adult. Which you really can't.

Furthermore, from my perspective as an Asperger's-diagnosed autistic person, it is abundantly clear to me that there's nothing to get comfortable about as far as diagnostic categories go -- I technically don't even meet the Asperger's criteria as I had self-help delays, but unless someone happened to encounter me on a particularly bad day or in mid-meltdown, my guess is that they'd not likely presume I was anything but "extremely high functioning" or have any clue as to the extent of the difficulties I had as a child.

(I haven't blogged about Alex Barton at this point, but I find his story chilling in part because that easily could have been me.)

IMO, everyone raising an autistic child (or any child, for that matter) is in the position of having to walk a delicate line between expecting too much, expecting too little, planning too rigidly for a particular future, and not planning enough, and I can totally see how confounding this can be (even as someone who doesn't have kids and doesn't plan to)!

Joeymom said...

I also find it interesting that my child, who is "classically" autistic, functions far better than most of the Asperger's kids we've met- except for the speaking. I would be leery of labeling any of the Asperger's kids we know as "high functioning" since they have so much trouble functioning; but I know they are labeled that way. Of course, i dislike the who "high/low functioning" terminology, as it appears to have little to do with being able to actually function.

I think my point is that flip-flopping diagnoses isn't that helpful. Asperger's Syndrome is autism. Using Asperger's as a synonym for "verbal" is a mistake. To use it as a benchmark for progress or future potential is just ignorant.

AnneC said...

I think my point is that flip-flopping diagnoses isn't that helpful. Asperger's Syndrome is autism. Using Asperger's as a synonym for "verbal" is a mistake. To use it as a benchmark for progress or future potential is just ignorant.

Okay, you get a standing ovation for that. :D

atelier jax said...

I so understand everything you wrote. My son is also very verbal and social, but cant hold a conversation for very long. He just does not get it and really doesnt care to. Except when it is his priority. I think everyone needs to just stop classifying everything. It is a weird human need to define a place in society. Where you fit in and where you dont. I think we all want our kids to fit in, but in the grand scheme of it all, it does not totally matter. Use all experiences as chances to show him something and learn and not get caught up in what other people think. Besides, do you remember anything when you were 5, 6, 7, 8, etc. I only remember from pictures. So savor the moments and make new memories everyday!