"You're not really autistic!"
How does it just dawn on somebody they are on the spectrum??? How do others that are older decide they are on the spectrum??? Schools won't even take real diagnostics so none of the self made Adult Asperger's have any real claim to anything but a way to put down what helped my child to not be on the list of who you're searching for.The thread, both on LB/RB and as carried on elsewhere, is appalling. A parent actually had the gall to message me that I was not actually disabled, but was instead hiding behind the cover of autism to shill for the government and big medicine. This person argues that anyone speaking, traveling, blogging, and conducting research can't possibly have a "serious" neurological disability.
Stifling my outrage as best I can: tell my mother, who sat with me when I was in intensive care as a toddler that I am not disabled. Tell that to the mother who did physical therapy exercises, moving my limbs to reduce the effects neurological damage. Tell that to the mother who became a teacher's aide in special education. And tell that to my wife, who has stood by me through more than any human should, from medical emergencies to "treatments" gone bad. My wife was treated poorly by me, and I do blame medications and lousy diagnostics. We both had some miserable years due my disabilities. That's one reason I don't like medications or psychologists who see what they want and give horrid advice (as opposed to neurologically-trained psychiatrists).
I'm not hiding behind anything when I speak on issues of education, support, and treatment. I'm not selling any therapies, no promises of cures, no assurances that your child will or will not be a successful adult.
What people like me do is speak out for compassion and understanding of those adults now being diagnosed with neurological / learning disabilities and those children who will become adults with various diagnoses and special needs.
From the editor of Age of Autism:
Why are there stories in the news from around the U.S. on the need for services for adults with autism? What did we do with these people in the past? We would have had to provide for their needs even if they were incorrectly labeled as mentally retarded. Why don't they just go where autistic adults have always gone?Yes, why don't those of us with neurological difference just slink away into institutions? Why don't we leave the discussion and take our "mild" disabilities with us so Generation Rescue and AoA can save the real autistics?
I am not proud to be disabled. I am humbled by the fact my friends and family, especially my wife and my mother, have made my life possible.
Why are there adults now "suddenly" appearing? Because health care improves, diagnostic instruments change, and even definitions evolve. A century ago we could not test for some forms of cancer. That does not mean those cancers did not kill people -- it means we misdiagnosed the causes of deaths. Just because people once died of "hysteria" and now are properly diagnosed with seizure disorders doesn't mean those seizures magically appeared one day.
There was no diagnosis of "autism" when I was a child. There was no diagnosis of "high-fucntioning" or "Asperger's Syndrome" until the later 1980s and early 1990s, depending on the specific clinician and how reliant he or she was on the DSM criteria vs. other emerging standards for ASD diagnoses.
Yes, I was diagnosed as likely "retarded" and later as suffering "brain trauma" by general physicians, neurologists, and various specialists. The diagnoses changed. I did not go shopping for the label of "autism" and still don't always accept it. It was much easier to think I was "ADD/ADHD" and eccentric.
No, I am not using autism as a cover to attack the views of some people. I do think there are charlatans and snake oil salesmen out there who should be exposed for preying on parents and individuals with special needs, but I don't accuse the parents of lying or having false motives.
There's a lot I want to say, but it is best to realize people are angry, frustrated, and desperate to find someone or something to blame for the challenges they and their children might face. I can't ease that anger. What I can do is ask that people treat adults with disabilities grouped as ASDs with more respect. We don't deserve accusations of dishonesty any more than those concerned parents do.
I'll keep calling the charlatans what they are, because I honestly don't think they are self-deluded. I think they are predators on families. If that means I'm "not really autistic" to some people, so be it.
I might be outraged, but it is at the people and organizations feeding the conspiracy theories and telling the public that people like me are frauds. I simply cannot be angry at the parents -- only saddened that they feel it is okay to lash out at self-advocates.