It appears to be official - the definition of autism will change soon
. The article itself doesn't have any specifics, but this article
says the proposed definition at the time was "...the person would have to exhibit 3 deficits in social interaction and communication and at least 2 repetitive behaviors, a much narrower menu." For a fuller breakdown of what repetitive behaviors qualify, you can go here.
Before I get to the rest of this blog post, I recommend if you have any concerns over whether or not you or someone you know would have problems in the new definition, you call your physician/pediatrician/neurologist or whoever gave the diagnosis of autism and talk to them. I also recommend you stay calm - I would bet they're getting swamped right now. Good luck.
I don't know how we'll be affected yet. Taking my own advice, I've got some calls in to various people and will get more information and see how we need to go from there. I don't know how my wife's support group will be affected either. As with much in this life - my particular one and in general - it's a wait a see situation.
It's worrying, of course. If Xan is decided to not be autistic, I kinda don't think the banishing of the diagnosis will remove his problems in turn, POOF! - like changing a book's contents by switching the dust jacket. He'll still be very nonverbal, still be sensitive to sounds, still have his issues both obvious and obscure. He just may not be able to access materials to help him with that and be in a class that can allow for his situation.
In short, changing what they say he is won't change anything about who he is.
It's sad to realize and know that in that classic self-test of "describe yourself", for him, 'autistic' will probably be high on the list if not the first word that comes to mind if he could answer. Sad, but necessary, because to a great extent it does define him, his troubles, his frustrations, his special needs that we have to be aware of and adjust for and be ready to help with. Perhaps some families choose to ignore, or maybe lie, about that first word in their child's definition, using excuses like 'they'll grow out of it' or 'just a phase' or 'everyone's got some quirks'. I would hope not, but maybe some people use the definition of autism as an excuse or a chance to game the system. In some cases perhaps this new DSM definition will winnow out people like the hopefully fictional character on Glee
, of whom I was not particularly impressed nor offended, which would not be the case for anyone trying to game the system by spreading the meaning of autism so thin you could read through it.
While I worry about what the change may have in store for us, one thing I don't want to do is make his MAIN definition be 'autistic' for anyone else who chooses to describe him. I prefer it to be brilliant, for being able to do so much and be so smart with everything he has to go through. Or strong, for being able to function, if imperfectly at times and badly at others, even with the daily odd feelings he has to go through. Or clever (not to leave out the close cousin 'sneaky') for being able to work around his communication problems and still get across a lot of what he needs to be known.
As I said before in another post, he IS autistic - at least according to current diagnosis - but that does not have to be all of who he is. I will never allow him to be dismissed by his definition, as if that one word is the fullest possible description of who he is.
So, while I will argue that he is autistic and does need the services and help he gets now, I will not use that as a limiting border for him. He can, does and will transcend and overcome his problems.
While the word autistic defines his condition, it does not define him.
In other news: The 2nd Annual Calhoun County Autism Walk is a go. It is again being done by my wife's local support group, web site www.calhouncountyautisminfo.com
. It will be April 28th, at Oxford High Stadium. If you want to join, volunteer, donate or what have you, e-mail me at BHRobin@aol.com and I will get you any information you need. For more information on the walk or any other autism questions, check out her site.
Hope to see you all there.