what I think of the new DSMV
February 12, 2010
I’m posting the various articles written recently, since the draft DSMV has been published for review. I think it’s important to hear all of the input, the different sides. But here’s what I think.
I think a diagnosis is important in order to get services in school and in the medical community. The problem I have encountered is that because of a single diagnosis, the “systems” want to place my child in a one-size-fits-all approach. This does not work for my child, it does not work for any child. Here is what I mean specifically.
My child was diagnosed 2 and half years ago with “unspecified nervous system disorder”. This means nothing to me and it means nothing to schools or the medical community. I couldn’t figure out why they even used those terms. He was evaluated and diagnosed by a whole multi-specialty team at the University of Washington. So these were well-qualified professionals. They had a difficult time figuring out what “category” he fit in. Why? Because he didn’t and he doesn’t fit into any one category.
We have since had two separate psychologists who specialize in asperger’s confirm that he has asperger’s. And when I review all of the criteria for autism (classic, regressive, PDD, asperger’s, etc.) he definitely does not fit any other category of autism. Asperger’s is the best fit. However, he does not have all “symptoms” of Asperger’s. And even today, the best psychologist in this area, does not see many signs of Asperger’s or Autism when they evaluate him. Here is what they do see.
They see that he is very clearly smart, i.e. he has all cognitive abilities as typical children and, in fact, he is more capable in some areas than typical children. He very clearly has auditory processing disorder. He cannot take instructions verbally. This was very clearly identified two years ago in his evaluations and has been very clearly confirmed in his most recent evaluations. Also very clearly confirmed is that he has anxiety disorder.
Now, auditory processing disorder, asperger’s disorder, and anxiety disorder. If my child is diagnosed with just “Asperger’s” and all of his education and medical services are designed around that, we would struggle big time to serve him well. And, in fact, this has been the case for the past two years. Until I educated myself about what is “really” going on with him, we couldn’t serve him well. The diagnosis of Asperger’s didn’t help much.
He is highly social, highly communicative, and he’s smart. So teachers have a difficult time ‘believing’ that he doesn’t understand the instructions, but it indeed does take 2 or 3 times of repeating or showing him visually until he gets it. Without understanding auditory processing disorder, teachers would penalize him for not getting started on his work, asking too many questions about the instructions, etc. He was getting punished for something he could not control, this is an area of significant deficit for him. But for children with autism, they try to teach the skill of taking instruction and getting started. Not all children with autism have auditory processing disorder and in fact some do better with auditory instructions than visual. So you can’t do a one-size-fits-all treatment.
People have a hard time believing that his behavior problems are because he does not understand normal social interactions or cues. If you had a radio on your desk while you were trying to work and it was bothering you, you would turn it off or move it away from you. Right? Well, for a child with Asperger’s who has not yet learned social thinking skills and may have sensory integration issues, if another student is sitting closely next to him and is bothering him with a lot of body movements or noises, he wants to turn it off or move it away. He does not yet have the skills to politely ask the other child to move or stop or whatever. Again, an important distinction to know with my child. Instead of penalizing him for pushing the students desk away, it is perhaps an excellent opportunity to teach social thinking.
Finally, if he is in an environment that does not understand him and he gets penalized for his deficits, his anxiety just becomes out of control. Of course it would.
So what I would like to see in the DSMV is less “categories” of diagnosis and more specifics. My child’s diagnosis might look something like - auditory processing disorder, social skills deficits, sensory integration and anxiety disorder.
If you look at most kids, and certainly all of the educated parents of autism that I’ve met, they all have the same issues. It’s not just about getting the “diagnosis” so that we can have services and have our child placed in a category or a program. It’s about identifying the specific deficit areas so that we can help our children. The expertise exists out there to get these very specific diagnoses. But translating that into actually getting our children the help they need is still a big challenge, particularly in schools.
I have seen changes in the autism field move at the speed of lightening the past two years. Two years ago I couldn’t find services for my child. Now, I can’t keep up with all of the appointments! And I look forward to even 5 years from now, looking back and thinking “wow, we were living in the dark ages when my child was in elementary school”. The future is about looking at our children’s unique abilities and deficits, educating them according to their individual needs and ensuring they have the medical resources that coordinate with school resources. This isn’t just for kids with autism, this is for all children. I look to the future with much hope for our children.
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