Tuesday, January 22, 2013

More "Recovery" Crap Rears It's Ugly Head

This time its the Wall Street Journal. I left a similar comment to the one I left in the New York Times.

I am the parent of two youngmen with aspergers. My oldest was in fact correctly dxed with PDD-NOS at 5. We were told that he would probably never have anything equaling a typical life.Through therapy, meds, support and our refusal to allow psychiatric professionals like Dr. Volkmar to tell me my oldest son was incapable of "XYZ," he has persevered and is now scheduled to graduate from college in the spring. He is also in the process of applying to graduate school. He was redxed as aspergers by middle school.

Autistics are now also learning how to be independent and self-sufficient happy adults. Contrary to Dr. Volkmar's assertion simply because they do not meet his criteria doesn't mean they are not happy nor independent. Additionally if the individual in question still has deficits, then he needs social skills support. It does not make him less of a person nor less capable in his life. By the way I know many neurotypical people who are quite set in their ways and would like a relationship but don't seem to be able to find anyone to share their lives with too. Meanwhile, most of the autism self-advocates I have come into contact with are quite happy and fulfilled human beings engaged in the same day-to-day activities as their peers.Something apparently the Dr. Volkmar's of the world seem to resent.

Would I call what happened to my son "recovered?" No I would not. What he did was learn how to compensate for how his autistic brain sees the world and how to help himself in our neurotypical society. Simply because you no longer exhibit certain characteristics doesn't mean you are no longer autistic. No one can rewire the autistic brain. The "trick" is how to help autistics learn to navigate the world as it is so that they have the same right to life, liberty and happiness that the rest of society enjoys. That is it in a nutshell. I wish people and professionals would stop calling it something it is not and trying to turn my autistic-brained sons into people they are not. Simple respect for who my sons are, while celebrating their real world accomplishments, would really be nice for a change.


I truly wish the professionals would deal with the reality. You cannot cure autism. The brain is the brain. Trying to rewire the human brain is impossible right now anyway. The truth of the matter is that it isn't about helping our children it is about aggrandizing themselves. Professionals no longer have anything to talk about. Therapies, meds and successful support systems have basically been established, so the chattering classes come up with this nonsense. They need some new mishegas (nonsense) to give their life purpose.

Instead of calling it "recovered" maybe they need to call it "socially functionally" or "socially independent." And yes I can see some self-advocates not liking that terminology. You can come up with your own vernacular of what you would call it besides "recovered."

When someone is in control (meaning no outward characteristics) of their depression, or bipolar episodes, or OCD, it doesn't mean they no longer are effected by the way their brain is wired. They simply have learned through support, meds and therapy how to control their issues so that they can function and probably lead happy lives. The same should be for autism.

Truth is for most people in society they hear the word "autism" they hear "living nightmare." So, I don't know if it is society's need to find a "cure" for their nightmares, that everyone and their brother, needs to believe in "recovery." To me its the same when television or movies need to make the disabled someone with magical abilities or that there has to be a positive reason that a person is autistic. Society needs to believe that on the other-side of disability is a true calling or meaning in "suffering." Someone needs to tell them, that there is no meaning in suffering and that sometimes life is horribly unfair. (One look at a oncology ward would tell you that. Also recent pictures of Syrian refugee camps could also prove my point.)

But hey I suppose that is the Jew in me. We don't believe that suffering leads to anything but pain and hurt. We don't believe that there is anything positive in suffering. Personally I think  Job was an idiot. So I don't need to believe there is a reason for disability and I do believe that at times, God is a real asshole.

No I don't need to believe in the term "recovery," but on the other hand I do know that my boys got better. That they have learned to function and to access their autistic brains to their benefit. I have seen them grow, develop, mature and understand the world around them. Are they still behind their peers in many ways? Sure, but in other ways they are way ahead of their peers too. No one ever seems to talk about that part of our reality. Will they one day be happily ensconced in an independent life? That is the goal. We will have to see, and as the cliche says, only time will tell. But for right now, we keep our eye on the ball. Trying to make each moment count and see what tomorrow brings.

But remember what I have always said...stop trying to project what your child's life will be. Take each moment, each second if necessary, and deal with the issue of the moment. Then one day, maybe ten years from now, you will look back and realize, just how far your child has come. Then some idiot doctor will tell you that your child simply because they can play with friends or talk on the phone is no longer autistic and the configuration of their brain doesn't matter.....OY

Elise