Why I got a diagnosis for my kid with Asperger's

Bemusedly, I have watched the debate over whether the kids with higher functioning autism should be diagnosed and/or treated. Whether they are stealing services that should be used for lower functioning kids or stealing money from normal kids who deserve to have more of an already over-stretched school budget. Whether over-zealous parents want their kid's every quirk ironed out. My first two boys couldn't have been mistaken for high functioning. Although my oldest now has language, his speech has that odd autistic quality, he perseverates on favorite topics, he stands too close and forgets common social rules (burping and farting loudly in a restaurant are just not acceptable.). My middle son. Let's just mention that at 11 his language is just emerging. He bites and hits himself, sometimes others. So a diagnosis for either boy was not optional.

Then comes boy #3. Speech at all the right times. Likes his bedtime story. Sleeps with a whale and penguin. Talks about adopting a dinosaur, mostly to annoy his older brother who screams "That's not true! Dinosaurs are dead for millions of years, right mom?!"

Boy #3 goes to kindergarten. Where it comes to my attention that he can't find where to line up after recess after 2 months. And he can't recognize his classmates and name them (and still can't after 7 months.) He can't pack his backpack or follow class routines. His teachers love him. And, just like my other 2 boys, a girl adopts him and mother/smothers him.

Well, yes, it's pretty obvious that he has attention problems. I took him in to the doctor. Overwhelmed the neurologist with my concerns. Yes, we start Focalin and I'll refer him for a team evaluation. The Focalin did help. He could better follow the visual schedules and classroom routines. But he still played alone at recess because he can't understand the ever-shifting rules of the playground. And he began crying that he didn't want to go back to school. The only reason I could get out of him was that he was "frustrated."

The team evaluation turned out to be a single SLP performing the ADOS. I sat in the room and had to remind myself to be quiet and not help him. He demonstrated pretty much classical Aspergers signs through the whole thing. Why do people get married? So ladies can wear a wedding dress. What is a friend? Uh. He could describe routine things but not non routine. Toothbrushing, yeah Vacation. What? (How about this last weekend staying at a hotel? What was that, chopped spinach?) Poor eye contact. Whenever he was overwhelmed he simply reverted to talking about whales The whole nine yards. It wasn't iffy.

But was it necessary? A lot of people are geeky. Maybe he's the next Steve Jobs. Our pediatrician said "don't stick him with a diagnosis."

But here was my reply:

There are lots of geeks. And many of them had perfectly miserable childhoods. Always out of step. Alone on the playground. Rarely asked to birthday parties. Too awkward to get a date. Bullied.

Isaac is already out of step in kindergarten. Where being a little different is actually the norm. What happens when kids start dividing into cliques? How does he resolve his speech problems? Not the one where he lisps a little. The one where it takes him so long to get a sentence out his listener just moves on.

Adults love him. He has an advanced vocabulary and loves to talk about things adults find amusing. Ocean animals, space. Adults don't mind (too much) when he rambles on and on and on about his favorite topics. And they don't mind waiting for his thoughts. Or repairing the conversation when he misses the point.

But peers won't do that. They will move on. Interrupt him. Ignore him. Eventually teachers will not call on him because he takes so long to answer. And my confident happy boy will become miserable.

Learning the social rules and how to play with peers will probably not stop him from becoming Steve Jobs. But addressing his problems will lessen his difficulties. And hopefully ensure his growing up is happier.

Comments

  1. I know where you are coming from. I hesitated getting diagnosis for my eldest child (Aspergers) I couldn't face having him labelled, it seemed that his problems with other kids would only be worse if he singled out by having a 'condition' As a result his school life was miserable and I eventually had to remove him from mainstream, get him diagnosed and get the help he really needed before anything improved. Now I have a six year old with high functioning autism and I didn't hesitate getting her diagnosed and the help she needs. Already she's blossoming and I have much higher hopes for a happier future for her. I'm with you all the way on this one, and I wish you and your family well.

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  2. I taught in school for children with asd, catering for those across the whole spectrum. Higher functioning children, in some ways, appeared to have more difficulties because more was expected of them but they were also acutely aware of their differences. Having that 'label' means that his teachers/peers will recognise and allow for the difficulties he has and will ensure Isaac realises there is a reason he has difficulties in certain areas, that there's not something 'wrong' with him and that he can learn strategies to help. You did the right thing.

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