1/18/2010

Counterpoint: What responsibilities do we have to the autistic community?

In her blog Raising Complicated Kids, Accidental Expert tells a heartrending story so many families have experienced. I personally have known people who went through the same experience, and more than anything else, it inspires me to become a researcher.
When I ask all those professionals what it does look like, no one has an answer. They only scratch their heads. Again.

Right now, all I know is, we have a child who exhibits extreme moodiness, is irritable at best, and gets severely stuck on the most benign issues. The other night a two hour meltdown ensued after she was asked to clear the table before she began a painting project.

What I've come to realize is that all those so-called experts are just as confused as we are. ...Why just until a few years ago, the medical profession didn't think Bipolar could manifest until later teen years. As for Asperger's, it wasn't even a diagnosis until the mid '90s.

There is little research available. These are kids after all. ...Why the more I see, the more I firmly believe that many of the interventions, the medications, and even the diagnoses themselves, are educated guesses at best. Life is complicated. Its rarely linear. And, as I look at my house in all its glory, it is certainly not neat. So why the preoccupation with fitting our children into pretty little boxes?
The more I look at these "pretty little boxes"--ADHD, NLD, SPD (and its subdisorder APD), ASD--the more I think very few people actually fit into them. All these disorders share symptoms--primarily attentional, sensory processing, and motor/praxis problems. In a sense, the same child could be any or all of these things. On the other hand, many people are like Accidental Expert's children: they don't fit in any of the boxes. They have attention and executive problems that don't fit classic ADHD; they have the praxis and sensory problems of NLD without the rigidity or problems with abstract thinking; they have the social problems of ASD while showing uncanny empathy and insight into others, when they have the chance to think about it. They don't seem to have any defined disorder. And yet, they may feel unable to cope with certain classes, with completing homework or chores, with daily living tasks, or with social relationships.

There is nothing like the frustration of a person who knows there is something wrong with him, but can't find an answer to the question: "what is it?" Or a person who is handed a box which doesn't really fit, then handed another box, then another, then another. And left to wonder whether all this time and money spent on consulting "experts" left her better or worse off than when she started.

Labels are supposed to carve nature at its joints. The current labels are all wrong because they don't do that. They're a rough collection of behavioral symptoms, the equivalent of "Headache Disorder" or "Stuffy Nose Syndrome." I want to do research that changes this. I want to ask the hard questions about how attention, sensory processing, and more complex cognition develop and interact with each other. I want to understand how these functions go wrong. I want to understand what symptoms actually go together, and why. Most of all, I want to ensure that no one ever has to go hunting through Label Land ever again.

Accidental Expert drew a very different conclusion than I did:
In the end I believe the answers won't come from the doctors, the scientists, but from us the parents. We're on the front lines. We live this every day and love our children for who they are and not the labels they possess.

So, as I step down from my soap box tonight, the only advice I can leave for others is to trust your instincts. Don't be afraid to fight for what you think is right or against what you know in your heart is wrong. After all, accidental or not, we are the experts.
Well, of course she's right that parents know more about their child than anyone else, and it's up to them to fight for their children. I've known several twice exceptional (gifted and learning disabled) people. Those whose parents didn't fight the endless labeling, drugged them, and left them to fend for themselves in an inappropriate educational environment struggled with depression and academic stagnation in high school and college. Those whose parents fought for them every step of the way, by obtaining appropriate diagnoses, rejecting inappropriate ones, and using educational alternatives when needed, struggled along the way but ended up successful.

Yet I don't think parents can come up with consistent, effective drugs and therapy for their child. Asking them to do so would be like asking parents to come up with cures for depression on their own. We need scientists and researchers. It saddens me to see Accidental Expert turn her back on the medical profession and on research, and ask others to do the same.

It's understandable why she does this; researchers and clinicians haven't lived up to their responsibility to the autistic community. Researchers in particular: clinicians wouldn't be scratching their heads in response to Accidental Expert's kids if they had decent categories to work with. Our responsibility is not to come up with theories about neurotypicals or to investigate a curiosity of nature. Our responsibility is to create a science of the development of individual differences that ensures that no child will ever be bombarded by ill-fitting labels ever again. When we live up to our responsibilities, I hope people like Accidental Expert will regain their faith in doctors and scientists.