"Clearly the label we use has extreme importance, and we need to make every effort to be accurate. Getting the label right is important for many reasons, not the least of which is that diagnosis often drives treatment planning, selection of medication, educational programming, and the way we conceptually and emotionally view our children."
Earlier this week we went to our second appointment with a new doctor. As was his procedure, I had spoken with him previously the week before so that he could be brought up to speed with Michael and his diagnosis. From now on he will be meeting with Michael and then with me as we work through how we can help him function better in school and with others.
This has been a wild ride for us as a family. And it continually brings up changes in diagnosis and treatment. This is sometimes because we are focusing on one thing (behavior) or the other (focusing and attention) and these different goals do not always fit together. Sometimes a medication that works for his attention skills, causes him to behave in ways that mark him as different (OCD behavior). Sometimes if he is not on his focusing medication, he is hyper-active and will not stop talking to you about his latest obsession.
Sometimes we get stuck on the labels too. For the longest time I have been saying he is ADHD. But there has always been the other label of Aspergers. I have always shied away from that label as every professional we have seen has said that while Michael has some symptoms of Aspergers he seems to be, if anything, on the high functioning end of that spectrum. And, frankly, it seems that when using one label versus the other--more acceptance is shown with the ADHD label.
However, with this new doctor, the first point he wanted to make was that he believed his diagnosis could be Aspergers. Part of me says--who the hell cares what he is, just help me help him! But the other part of me wonders if I should pursue the other diagnosis through the school system to see if there are other accommodations that they could be giving him.
And then there is the whole labeling thing in the first place. I hate that I often have to point out that he has ADHD--I have gotten into a habit of doing so and I had started out not ever pointing it out, but as time has shown me that people seem to be very mean and intolerant of people who are different or quirky, it has been my default button to push to try to make sure he doesn't get hurt (or at least not get as singled out).
In the end I will have to just see what this school year brings. I hope it brings not only learning but some understanding of how to fit into this society which can get very hung up on labels.
"Whatever their profile, whatever their label, both the child with ADHD and the child with Asperger’s syndrome require us to change our assumptions about relationships and our expectations about behavior. They are both demanding, confusing, exhausting, and frustrating. Inside, each is a child who needs tolerance, our informed understanding, our thoughtful interventions, our patience, and our love."
Quotes from this wonderful article.