The Autism “Epidemic”: More Neurodiversity vs. Cure

This piece was originally written on 12 April 2007, and published on an old blog I ran.

The fight between the neurodiversity devotees and the cure devotees is not likely to end any time soon. It has reached the point where it is purely about rhetoric and self-righteous condemnations of the other side. Charges of child abuse are thrown back and forth. Each side pronounces itself the holders of pure scientific evidence. The other side is dependent on junk science, of course. Neither will admit that they fall back on anecdotal evidence far too often.

Last night, I spent some time perusing neurodiversity.com, a site with an obvious viewpoint. The owner of the site, Katherine Seidel, inspires slavish devotion from the neurodiversity proponents. They trumpet her recent efforts to get a scientific study removed from a journal. Apparently, censorship is something to be applauded. They accuse the men who did the study of junk science and bias. These particular men are the regular targets of their hatred. They use this success as an opportunity to bash those who believe in the possibility of curing autism. Again, the devolve into name-calling and self-righteous pontificating. Whatever the “misrepresentations” of these two men, the tendency of the neurodiversity crowd to consistently take part in ad hominem attacks and accusations of bigotry weakens any credibility they might have. Both sides of this argument behave like children on the playground. 

For all their claims of the scientific basis of their claims versus the pseudo-science and misrepresentations of the cure proponents, the neurodiversity group commonly resorts to the same tactics they find so objectionable when used by the opposing side. While accusing the other side of relying on anecdotes, they trot out their own anecdotal “proof” of a genetic cause for autism: they have seen evidence of it in other family members or themselves. Does that constitute proof? Would it if the other side placed their faith in such personal testimonials? That’s highly doubtful. While I personally believe that the primary cause of autism is genetic, the behavior and tactics of this group does nothing to advance that theory. Their hysterical screeching, finger-pointing and name-calling does little to back up the idea that they are the rational parties in this debate.

Underlying this debate is the question of an autism “epidemic” over the past several decades. Of course, proponents of the cure blame this on environmental factors, specifically vaccines. The neurodiversity crowd, quite logically, point to the change in diagnostic criteria and practices. They have proof of liberalization of the diagnostic criteria. What they don’t have, however, is proof that diagnostic practice has changed–and they don’t seem to think they need to produce any. If they are to stake their claims to the consecrated ground of scientific proof, then they do, in fact, need to produce such proof. 

There is certainly anecdotal evidence that current diagnostic practice includes a certain amount of intentional misdiagnoses. This can best be summed up by the oft-quoted statement of National Institute of Mental Health psychiatrist Judith Rapoport that she would “call a kid a zebra if it will get him the educational services [she] think[s] he needs.” In fact, I have personal knowledge of such practice. A child that shares a therapist with my own son was given the diagnosis of autism despite the reservations of the psychiatrist involved and her therapist. The grandmother insisted that the child had Asperger’s Syndrome (also doubtful), which the psychiatrist said he’d be more comfortable diagnosing. However, the state of Arizona does not provide services for those with AS diagnoses as it does for those with diagnoses of autism. The psychiatrist agreed to give the child the diagnosis so she could continue to receive her services. 

While I do not blame the family for working to get the child services at all costs, and I understand the actions of the psychiatrist, this kind of behavior does a lot to undermine the legitimacy of claims of “epidemic.” If this kind of misdiagnosis is at all common, it could account for a significant portion of the increase in autism in the U.S. The U.S. health care system is squarely to blame in this case. Our practice of care for the wealthy and neglect for the poor and middle class forces desperate families to take desperate measures.

There is already evidence that a significant portion of the increase is a result of liberalized diagnostic criteria, specifically the creation of the PDD-NOS (pervasive developmental delay, not otherwise specified) diagnosis and the increase in Asperger’s Syndrome diagnoses. AS was not added to the Diagnostic and Statistical Manual of Mental Disorders (the DSM) until 1994. PDD-NOS was added seven years before that. There are indications that as many as three-quarters of the increase in Autism Spectrum Disorder diagnoses has occurred in these two categories.

Finally, the very claim that autism has genetic causes is as unproven an assertion as the claim that mercury in vaccines has led to an “epidemic” of autism. Several studies have found various genes that are present in some people with autism. However, there has never been any study that has linked autism to a specific gene definitively. In most cases, these genetic indicators are present in some individuals, but not others. What conclusions are we to derive from that? That only those with these markers are “real” autistics? That the genetic markers are coincidental? That there is a confluence of genetic and environmental factors that cause autism? It could be any of these three possibilities or it could be none of them. The fact remains, however, that the neurodiversity crowd has hitched its wagon to a star that is just as questionable as the one the cure crowd is following. It is not that I disagree with all of the assertions of the neurodiversity devotees. It is that I disagree with their claims that their position is based on pure science, while the other side is based purely upon emotionally charged pseudo-science worthy of ridicule and disdain.

It is tragic that these warring groups of “concerned” parents can’t realize that their behavior is far from helpful. Both sides are doing more harm than good to the welfare of people with autism. The insistence that autism is just “different,” and we should all celebrate it is foolish. My son’s autism is not just a matter of difference. It is an impairment. If he is unable to deal with the world around him, he will be in continuous danger throughout his life. This will keep him from ever being able to live an independent life. This inability to cope with the environment without significant help is an evolutionary dead-end. Organisms that cannot adapt to their environment are prone to dying out–on the individual and group levels. That is not what I want for my son. Anyone who is so in love with “diversity” that they think the inability to adapt is something to be celebrated really needs a remedial course in evolution. 

On the other side, the proponents of cure are willing to put their children through one medical procedure after another, whether there is evidence to support the efficacy of these procedures or not. Like the parent of a terminal cancer patient who inflicts painful procedures on the dying child in desperate, unrealistic hope of cure, these parents forget about the child they have; instead, they form tunnel-vision focused on the child they wish they had. They are willing to put their children in schools were “aversive” treatments–including electrical shock–are inflicted on their children. In essence, they are willing to forego all semblance of scientific method or ethical behavior in hopes of a cure that probably doesn’t exist. Individuals with autism can be helped to deal with their environment. It is unlikely that their fundamental autistic nature can be changed, however. Focusing on helping them integrate their autism into the world around them is the best thing we can do for these kids. Neither of these militant factions seems interested in that. They are too busy trying to prove their own rational and moral superiority.

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