It was recently announced that the Aspergers diagnosis, which falls on the autism spectrum, would be eliminated from the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) due out in May 2013. This is the reference and guide book for many mental health professionals, especially psychiatrists. Instead, those individuals who previously would have been diagnosed with Aspergers will be simply diagnosed as Autistic, although a rating scale of the severity of symptoms will also be used.
There is technically nothing wrong with that decision, which was peer reviewed by mental health professionals and put up for a vote. Only life isn’t technical, is it? While there are many articles on the web by Asperger individuals voicing their displeasure at this change, I’m going to instead address this as the mother of an almost 10-year-old boy who, approximately 18 months ago, was diagnosed with Aspergers. I’ll be the first to admit, that in that psychiatrist appointment, I did not jump for joy. I cried, sobbed and literally screamed at the doctor that I would be (insert expletive here) if I would let this horrible thing stop my son from graduating from a great university and going to work for NASA. After I composed myself (sort of), the psychiatrist informed me all of that and more was possible. Life was just going to be different for my son, our family and everyone with whom he interacted. That prediction has been remarkably true. My son, like many Asperger individuals, has difficulty interpreting social situations and body language. He engages in one-sided, long diatribes without noticing other’s discomfort. But the joy our son has brought us makes me cringe at the thought of an “autism cure”. My son looks at the world differently, which sometimes is socially awkward, but in my opinion, the inventors, entrepreneurs and scientists that impacted history and bettered our world did so, as well, and thankfully!
Some of the ‘mistakes’ that would horrify other parents have made me see the world through my son’s remarkable eyes. Once at a restaurant when the African American waitress brought our drinks, he innocently looked up at her and said, “You have a beautiful color of skin!”. Most children might treat a bout of insomnia by watching cartoons. My son last week instead built a LEGO Mindstorms and Tetrix rolling robot with four wheels on rotating axles with a computer box brain with an ultrasonic sensor.
But if Aspergers already falls on the autism spectrum, what’s my issue with the change? Aspergers isn’t just a diagnosis or how I think of my son. It’s many other wonderful things: an identity, a shared community that supports each other locally and long-distance and so much more. The proposed change would give my son a severity “number”. Think of it like this … how would you feel if instead of different races, nationalities or religions, a group of “experts” eliminated those and gave us all numbers? Do you know how ridiculous I’m going to feel the next time I post on the local Facebook page for parents with autistic children, “Wanted: playdate with new friend — need a #4 or #5”?
The day I read the news article detailing the change to Aspergers in the DSM-5, I took a few moments to calm myself. Then I waited until my son was relatively calm and asked him to sit down with me. I explained everything, because I’m not a believer in withholding information from children unless it involves material as severe as serial killer details or pornography. I told him there was no committee that would ever be able to tell him who he was or should be. We discussed that in future conversations, he could introduce himself however he wished. I also prepared him for possible rude comments by others who might tease him that “there is no such thing as Aspergers.”
My child is autistic. My child is an Aspergers individual. He has NEVER been a number, and he never will be. Assigning numbers to people happens in prison or concentration camps. My son is a beautiful, free soul who will change the world, and there isn’t a committee of experts in the world that can change that.
I would like to thank readers, new and old, for bearing with my absence for a few months while I dealt with some serious family issues. Please check out two Facebook pages: Special Needs Parenting I did NOT sign up for this (open page) and the closed group (please click to apply) of the same name. I will be addressing some recent reader emails and questions along with posting new pictures that space limits here do not allow. You may also follow me on Twitter @Jhobbssaunders and email me at email@example.com.