Friday, January 18, 2013

I Wish The Word "Recovered" Would Disappear

The New York Times, has printed an article entitled "Some with Autism Diagnosis can Overcome Symptoms, Study Finds. " The article goes on to discuss a study of 34 autistic individuals who seem to no longer have autism-like characteristics and some in fact have lost their diagnosis altogether. Not for nothing, this article really annoyed me. I think the irony here is that at one time I would call what happened with CM1 "recovery" too, for lack of a better word. But as I have grown, and my children have grown, I understand that while CM1's outward symptoms and actions no longer would elicit a diagnosis of PDD, (and maybe under the new DSM-5 even aspergers, depending on the particular moment of any particular day) his entire being is that of an autistic individual. My sons' autistic brains are their brains and no science, no therapy, no psychiatric professional can change that. No one has the right to take from them who they truly happen to be.

And guess who also makes an appearance in the article, but the autism world's own psychiatric Dr. Evil, Volkmar. He in one sentence decides that those who were once autistic but now are living independently, will only develop depression and be suicidal. I suppose he has never met any autism self-advocates in his lifetime. Someone really should introduce this so-called professional to the people of ASAN AND GRASP.

I left the following comment for the reviewers. Not sure the NYT will print it so I post it here.

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 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 they are not all suicidal and depressed. 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. 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 would really be nice. 

DSM Conundrum, Time to get a Grip
Would You Use the Word "Recovery"
U is for Dispelling Unreality


UPDATE:  Apparently the NYT  did post my comment HERE