Saturday, February 26, 2011

THERAPY-NOS (Not Otherwise Specified)

Once again, a professional has questioned my son’s diagnosis. “He sounds like he might be more ODD (oppositional defiant disorder) than Asperger” she said. “Who diagnosed him?”
Ugh. Here we go again. I have been on this carousel ride more than once. He has been pegged as having PDD-NOS (pervasive development disorder-not otherwise specified), ODD, Aspergers, and high-functioning autism. Oh, and there was the kindergarten speech therapist who thought he was retarded and had no sense of reality. He was FIVE. She thought he couldn’t understand the difference between reality and fantasy. Don’t most kindergarten students have trouble with that? Isn’t that why we have such fun with the tooth fairy, and leprechaun traps, and fairy dust? But…I digress.
Once again, I have to advocate for my son to a professional. The thing is, the DSM changes and evolves more often than an Aspie changes wardrobes. What difference does it make what label you put on him today? The new DSM will come out and the label will change. The other thing is, and this is a big one, I live with this kid. They don’t. Why do so many people think they can make quick decisions about this boy that they have never spent any significant time with?
It doesn’t just come from professionals. Family, friends, even strangers readily supply their brand of therapy and advice.
“He just needs a change” (Has this person ever MET an ASPIE?)
“He needs more structure” (Oh my stars! We live and die by the whiteboard and lists.)
“He needs less structure”
“He needs a quiet, calm, environment” (this person doesn’t have five kids)     
“He needs medication”
“He needs to get off all of that crap” (the medication)
“He needs this system…this book…this method…this therapy…and on…and on…and on…”
Let me just say, advising is easy, but I LIVE with this kid. I have been living with him every day, for sixteen years.
I need advice from people who actually live this situation. I need advice from people who understand what it means in Aspie World when school is cancelled abruptly for snow, when school assemblies alter an entire day’s schedule, or when the weather changes and ruins a dry, warm walk to the bus stop. I live in Aspie World. Those small, seemingly harmless changes are like throwing a large stone in the center of a calm pond. It creates a huge splash and then there are waves and finally ripples. The family- every other member of the herd- fights desperately to keep their little sailboat level on the precarious waves.
I once heard a very successful Aspie say “if you’ve met one person with Aspergers, you’ve met one person with Aspergers.” How absolutely true.
My advice to all experts, professional and not otherwise specified: Put the DSM, back on the shelf. Don’t make assumptions. Don’t toss around diagnoses like beach balls. Meet my child (or anyone’s child) and walk a mile with them before you give advice. We (the families who care for children on the autism spectrum) need support and advice. We need a beacon on the restless waters. Don’t throw more stones at our pond. Throw lifesavers, or get off our beaches.

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