Orac and his neurodiversity followers get it wrong

I have been reading the latest blog entry of "Orac", a cancer surgeon who occasionally writes about autism and the anti-vaccination movement and seems to have a neurodiversity following. I could not resist making a comment there when I felt that he was trivializing the hardships that persons with mild autism like myself have endured in their life. I won't post my comment here but I guess anyone interested can read it on the respectful insolence blog.

Orac writes: it is disturbing that she views autism as so frightening. The main reason it's frightening is because that's the message in the media and the anti-vaccine movement: that autism is terrifying, that it "steals the child's soul" (that's what Jenny McCarthy's co-author has said); that it is beyond hope. While there's no doubt that raising a child with severe autism is an incredible challenge, the image of autism many parents have is that it is all like the most severe cases, when it is not. As the term "autism spectrum disorders" implies, it's a spectrum, from the very mild to the very severe.

So, it would appear that Orac would believe that a mild case of autism such as I have is nothing to be frightened of. He does not understand what it is like not to have romantic relationships, not to be able to make a living, having had to attend special education schools, having been fired from multiple jobs, having phobias, having an uncontrollable addiction to self-stimulatory behaviors and having a perceptual motor impairment that prevents people from being able to handwrite very well or do other activities. He seems to believe that the prognosis for those with autism, particularly the mild cases, is not hopeless, but I must disagree. Aside from the severe cases, people are afraid of autism because it is a problem, it makes lives of those and their loved ones quite difficult. I agree that it is a noble goal that he disputes the anti-vaccine crowd and speaks out against the biomed quackery and I commend him for it. As far as I can tell, Orac has no personal experience with autism whatsoever. He seems to have some unrealistic ideas about autism that come from having listened to the mistruths of so many members of the ND movement who read and comment on his blog. But there is another side to this story and I believe that Orac should listen to persons on the spectrum who are not neurodiverse. I hope that he will read my comments and at least think about them.

Of course, various neurodiversity spinmeisters who read his blog tried to refute what I said. One person named Pablo did not understand how I would complain about ND on one hand and also complain about being in special ed on the other. He has the false belief that ND is in favor of equal rights for persons with autism and want them to be educated with mainstream students. Pablo obviously does not know about Ari Ne'eman's and ASAN's activities in lobbying for full federal funding of the horrible IDEA law. This law helps parents pay for special education schools. So exactly the opposite is true. ND tries to lobby for special ed, at least some of them.

Another response from someone called Clare:

Ummm... since many of the self-same advocates are themselves mildly autistic, I think they are very well aware of the hardships... That said, I think you misinterpret Orac's point, which is that blanket characterizations of autism as a "frightening" condition are likely to dissuade parents from seeking realistic and effective medical advice (and interventions as and where appropriate), and instead drive them towards "therapies" that are ineffective and frankly dangerous

My dear Clare: I am very skeptical of the autism of many of those in the ND movement. Most of them allegedly have Asperger's and did not have the speech delay I had as a toddler. Even the one's claiming Asperger's I question whether they really are on the spectrum and I know many of them never went to special ed schools, were able to get married and in some cases make a good living. I don't believe most of them have had experiences like mine. If research could go ahead unimpeded then perhaps we could find real effective treatments or even a cure. But the ND's that Clare defends don't want this. They want to stop science research that will find the genetic and neurologic etiologies of autism that will lead to real treatments. Unless it is Laurent Mottron's research just done on high functioning autistics that just tries to prove how smart or how great autistics are. Until real answers are found many parents will become desperate and try quick fixes that might be dangerous and are of dubious value. The ND movement just helps propagate this by preventing legitimate treatments and cures from being found.

One person calling themselves Calli Arcale challenged me to tell Temple Grandin what I said, even though my problems are more severe than Grandin's. She (or he) also goes on to state that if certain people engage in fear mongering against autism, then people will spend money on chelation and other ineffective biomed treatments. They state that autism is manageable so, they can just do these manageable treatments rather than the biomed/DAN type treatments. I do not agree that autism is manageable. I do not believe there are any effective treatments and the prognosis for most persons with autism, even mild autism, is poor.

She goes on to state:

People get the idea that autistic people are monsters, and then they don't want to spend money to help them. They want to lock them away where they will not hurt the general public. That's what was done with autistic people a century ago. People were so afraid that they decided that these people were not really people, and that it would be okay to take away their rights to life, liberty, property, and self-determination.

jonathan, I think making "neurodiversity" a movement a la feminism has some of the same dangers that feminism itself has -- that is, it runs the risk of becoming a parody of its goal. That doesn't mean it's always wrong, nor does it mean that the basic idea isn't sound. Feminists are definitely known to go overboard; but women do deserve equal rights to men. Neurodiversity could eventually go too far as well; but that doesn't mean autistic people (and depressed people, and addicted people, and so on) aren't every bit as worthy as "normal" people.

You say that neurodiversity has had the opposite effect, that it has increased stigma -- could you elaborate, please? I'm not aware of any instances of this happening, especially since very people in the general public are even aware of the movement. (They're more aware of Age of Autism and such.)

Needless to say there are persons with autism who hit babies and commit crimes and even kill people as a direct result of their autism. That is not to say the majority of persons with autism are like that. But autism being a dangerous condition in at least some cases is certainly a reality. If anyone makes autistics look like absolute monsters it is those in the neurodiversity movement. From being sweared at by David Andrews, from having Clay Adams and Phil Gluyas insult my mother and write insulting name calling comments which I never post on here, and going to other blogs and ridiculing me and from the abusive and condescending remarks I had to endure from Alyric before she passed away. Not to mention the fact they teach teenage kids like sadder but wiser girl that people like me are like Jews who help Nazis murder other Jews and Ari Ne'eman claiming autism speaks is morally complicit with murder and the autism bitch from hell saying that persons like myself should be strangled to death and turned into cat food. This is the stigma that is created towards autistic people. This is one reason why I blog critical posts of neurodiversity. I feel they make us all look like monsters when most of us are not like that at all. With increased media coverage, particularly of Ari Ne'eman, there has been much greater awareness of neurodiversity and this will probably continue.

Comparing the woman's lib movement to ND is absurd. ND is not about equal rights. It is about denying persons the right to treatment and cures that might exist. It is about spreading propaganda like the autism no myths video staring Ari Ne'eman who claims that the prognosis for persons with autism is just fine when nothing is further from the truth.

So Orac and his ND followers get it wrong.