Friday, April 1, 2011

What is in a Label?

April is Autism Awareness Month. I thought I would share part of my son's story here in case someone else in the same situation of their child being possibly being mislabeled ADHD. A couple weeks ago I took my oldest child(12 years old) to Children's Autism Clinic. in Seattle. We had waited 6 months for this appointment. The long and short of this is that we don't know if my kid has Asperger's even after our appointment. It is complicated. Isn't that the story of my life? It complicated that he has some well established labels with symptoms that overlap with one and another. We have been calling this ADHD and later ADHD with anxiety for long that is all we saw. Like many people, our general pediatrician managed our son's ADHD. Our son had been labeled ADHD since Kindergarten. It wasn't until 4Th grade that we knew we couldn't hobble along like this with our son. 3rd grade was to put it bluntly a nightmare. We hired a Psychiatrist and then a Therapist for our son. Some of the insightful specialists that #1 son see said we need to look into this further. Things aren't adding up and he isn't responding to his treatment in a typical way. That is how we ended up at Children's. So now, we need to wait another 3 to 6 months to see a clinical psychologist. This specialist is going to make the definitive decision is this Aspergers or not- maybe.

Part of me is WHY BOTHER? and even LARGER PART says, " What if we have been looking at this ADHD/anxiety all wrong?" You find yourself questioning," What if we had known he had Aspergers in 1st grade? Would we have done anything different? Is he mislabeled?" I just don't know. That is the honest answer. These long waits for appointments just give me time to ruminate. It would be lovely not to second guess yourself.

Labels in my son's world guarantee services that he will or will not receive from school. He is in Middle School and his current labels have garnered him some protections in Middle School. He is fully mainstreamed and has no academic accommodations. He does attend 1 behavior class and has access to behavioral teacher whenever he needs her. I really can't say enough positive things about the individual teachers who have really worked to make it a successful year for him. Some of them were a complete surprise like the gym teacher. Despite and because of his abilities, he is doing OK and really great academically. He is excelling academically on the honor roll but not excelling in his personal relationships. In so many ways he has proven me wrong. By the way, Middle School is hard on parents too.

Changing my son's label/diagnosis will not grant him additional accommodations in Middle School. The only reason to bother with getting this evaluation is because anything that opens a door or window into knowing what is in my son's world makes it worth it. Anything that improves his quality of life, I want to do that thing. I want him to know that his abilities are gifts and not crutches. I want him to live his best life. I want him to be successful in the real world. Isn't that what all parents hope for? Somehow from that perspective, the labels don't matter. Because the only important label is son.

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