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, 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.

On Autism: “Neurodiversity” vs. “Cure”

I originally wrote this piece on 10 April 2007 for a previous blog.  I am reproducing it here, because the issues still concern me.

The other night was typical for me: I went to bed around 10 p.m., then began waking up promptly an hour later. Try as I might, I couldn’t get back to sleep and stay that way. So, as usual, I eventually gave up. While times like this cry out for staying in bed, maybe reading a book or watching TV until I can fall back asleep, those options don’t work so well for my husband, who doesn’t face the insomnia that haunts me. The only option was to move out to the living room. But what to do once I was there? Get online, of course.

I’m horrible about reading and answering my email, so I decided this was an opportune time to do that. As I opened my email, I found a message from a local listserve. The organization is called P.A.S.S., short for Parents for Autism Support & Services. It’s basically a self-help group here in Tucson that puts parents of children with autism in touch with each other. When we need advice on schools or therapists, suggestions about getting the state to provide needed services, or just support, we can contact this source of first-hand information and advice. Most of us face a lot of struggles getting needed services for our children. On top of that, we get tired. Like it or not, taking care of a child with autism is harder than taking care of most neurotypical (NT) children. Just keeping these kids safe is often a 24/7 job.

On this day, however, the email from P.A.S.S. wasn’t a parent asking for a recommendation for a speech therapist or school. Instead, the woman who runs P.A.S.S. was letting us all know about a memorial service. She mentioned the service was for a local autistic boy whose mother had murdered him. As I’ve been caught up in my own son’s needs for the past few months, this tragedy was news to me. I had to find out more.

The story is one of horror: a 5-year-old autistic child was given 12 Tylenol PMs by his mother, resulting in his death. I’m assuming his mother was overwhelmed with his behavior and was trying to quiet him. That’s the only (twisted) explanation I can determine for the murder. It also turned out that she had been forcing the child’s feet and legs into extremely hot water to discipline him. A sheriff’s deputy had come the day before the child died and found him with his legs bandaged. The mother explained them as the result of a fall. The deputy thought that was perfectly reasonable. We now know they were covering burns caused by the scaldings inflicted on this child.

It came to light that this was one of the woman’s three children. The other two–both teenagers–had been removed by CPS after the oldest attacked the 5-year-old. The youngest was left in the household. The woman was living with two “friends,” one of whom apparently helped her “discipline” the child. The father was out of the picture, as the mother was not in contact with him. I’m not thinking he would have been much help, though, as he had been charged with child abuse for choking the middle child–whom also had been diagnosed with autism.

Of course, everyone wants a quick, easy explanation for what happened. The mother is a monster. The father is a monster. It must have been caused by drug use. You name it, someone has claimed they know the whys and wherefores of this case. It couldn’t possibly be a complex issue that takes some time to come to grips with. The saddest thing is that this vulnerable child, whose communication was likely stunted enough that he would have been unable to get help, was left behind in a house where violence was not new. At the very least, the state should have been providing extensive respite services for this family. There were clear signs that they lacked the ability to deal with the children. If any of these kids was going to be left behind, the mother needed a lot of help coping with some of the more difficult aspects of raising a child with autism. The mother, in turn, clearly failed to reach out for help that she obviously needed. When the police came, she lied about the injuries she had inflicted on her son. Instead of asking for help from friends, family or the state, she chose to injure and drug her child. The other adults in the home sat on their hands or actively helped her torture this sweet boy. Clearly, jail is where these people belong. Unfortunately, that does not absolve the state of Arizona or Pima County for failing to protect this vulnerable child when there were clear signs that he needed them.

That’s not where the story ends, however. In my efforts to research the case, I stumbled upon a site and message board for parents of autistic children. This site is run and frequented by devotees of a philosophy known as “neurodiversity.” In essence, they argue that autism (or Autism Spectrum Disorder, which includes autism and several related disorders) isn’t “wrong,” it’s just “different.” Parents are expected to celebrate the fact that their children have autism. Anyone who dares suggest that a NT life would be easier or preferable for their child is attacked as a moral monster. Those who seek to make their children’s lives safer or easier are reviled as bigots.

As the mother of a six-year-old boy who has autism, these people infuriate me with their tone and sense of moral superiority–not to mention the danger they pose to my son’s future. My son is prone to self-injury. He bites himself. He hits himself. He runs and crashes into the furniture. He climbs on things with no concern for his safety. Leaving him alone in a room long enough to go to the bathroom puts his safety at risk. I never know what he will be doing when I come back. When taken outside, I must keep physical contact with him at all times to keep him from injuring himself or wandering off where others may injure him. This is not “normal.” This is not merely “different.” This is dangerous. This is something that must be treated through therapies. This is something that my son will always need help to cope with. This is not a good thing, as the neurodiversity devotees would claim.

The unfortunate part is that the other side of the debate is equally out-of-touch. These are parents who claim that autism is a new disease, having emerged in the second quarter of the 20th century. Its cause? Mercury-poisoning, primarily from vaccinations. Their rants are equally intolerant and off-base. They have no proof for their claims. They rely on anecdotes. They ignore evidence that doesn’t support them.

So, where does the truth lie? The fact is that I agree with the neurodiversity advocates that autism is rooted in genetics. That is not to say that I think it is only genetic. There may be environmental triggers that exacerbate the genetic predisposition. However, I agree that genes play a significant role in the development of autism. That is not to say that autism is just fine and dandy and should not be treated in any way. Unfortunately, that is the position of the neurodiversity crowd. They would leave a child to injure himself because it’s simply his way of dealing with the world. He’s just “different.”

The fact is, many mental disorders are genetic in nature. Schizophrenia appears to have a significant genetic component. That does not mean it is “normal” and should remain untreated. In fact, like autism, it can lead those with the disease to injure themselves or otherwise place themselves at risk. Many medical conditions are genetic in nature. Heart disease, diabetes, high blood pressure, and even some cancers appear to have genetic components. They still pose significant risk to life and to health. They still need to be treated. “Genetic” does not inherently equal “good” or “normal.”

To see the danger posed by neurodiversity advocates we only have to look back on the release from institutions of thousands of mentally ill individuals in the last half of the 20th century. In the U.S., the state of institutions was atrocious. People were locked up for life, abused, and left to fester, rot and die. There is no doubt this was deplorable and had to come to an end. However, the method of ending it was simply to open the doors and turn the mentally ill onto the streets. Laws pertaining to involuntary commitment were made stringent. People would be stabilized, then returned to the streets where they soon fell back into their previous ways. They put themselves in danger. Some of them put others in danger. They were easy targets for “normal” people who exploit those who are weaker than themselves. Most of the mentally ill population certainly did not live “better” lives than they had in the institutions. So, they went from the frying pan into the fire. Instead of taking a considered approach–figuring out which individuals truly needed the kind of ’round-the-clock care of an institution, deciding which individuals were likely to flourish on their own or in less restrictive environments, improving the care and conditions in the institutions, and acting accordingly–they simply threw the baby out with the bath-water. The neurodiversity crowd would have us do the same with individuals with autism. Stupid. Foolish. Deadly.

Still, the other side poses dangers, as well. There are so-called treatments and cures out there that are barbaric. I agree with the neurodiversity crowd when they say that ethics often go straight out the window as soon as autism is mentioned. Just a few weeks ago, I watched a television news magazine on ABC that followed the Rotenberg Center, a “treatment” facility in Canton, Massachusetts. The same institution has been investigated by other news outlets, as well. It was founded by Matthew Israel, a student of behaviorist B.F. Skinner. This monster had created a program that involved putting electrodes on the skin of children with autism. Any time the child showed “behaviors,” s/he was shocked with a very strong charge of electricity. The reporter allowed herself to be shocked with the device these children are forced to wear. She writhed and jerked in intense pain for quite a long time. The “nurse” administering the shock told her that a child who continued behaving in an undesirable way would receive repeated shocks until s/he stopped. The barbarity of such a practice is nauseating. How such individuals could not be charged with child abuse is unfathomable. Such averse behavior would never be allowed when dealing with a NT child. In all likelihood, if the diagnoses of autism and mental retardation was not connected to these children, this “doctor” would be in jail, as would his staff. Instead, he receives millions of dollars from school districts to torture some of their exceptional education students.

The problem is that we can’t turn to the opposing camp for answers. They are too busy ranting about mercury poisoning. They climb to the rafters and scream about every new “cure” for autism. They turn their children into guinea pigs. I will not do that. What’s more, I don’t buy into their mercury-poisoning theories. The first blame placed on a vaccination was levelled at MMR. My own son developed symptoms of autism before he had that vaccination. I had been holding off getting some of his vaccinations for a variety of reasons–one of them, the storm about autism and vaccines. Once he already had the signs of the disease, it seemed foolish to leave him at risk of curable diseases by failing to vaccinate him. Put simply, he was autistic before he ever got that vaccine. So, now do they claim it is all vaccines, not just MMR? What proof do they have? The ability to move from one “cause” to another with such ease just smacks of unscientific grasping at straws.

Like the neurodiversity crowd, the cure crowd feels very self-righteous about the course they’ve chosen for their children. It’s not enough that they think they are doing the right thing; everyone who makes different choices must be convinced to do the same. If that should fail, these obstinate parents must be condemned and vilified. I have experienced this firsthand. Approximately 18 months ago, my son and another boy sat in a therapy room together. My son was getting speech therapy, while the other boy received sensory integration. It wasn’t the boy that made the impact, though; it was his mother. She began loudly and forcefully expounding on the benefits of some new injection her son was getting. It made all the difference, she claimed. Every parent should do it. In fact, she flatly told me, I was running out of time. I had to get on the ball and get these injections for my son right now or I was failing him. To do so, I should change doctors, I was informed. She gave me her doctor’s name. The fact that I adore my children’s doctor, have no desire to change, and must choose doctors approved by my insurance plan didn’t phase her. She was so far into her spiel that my comments weren’t even heard. Needless to say, my son never got those injections. What he has received is a lot of therapy, a lot of help at home, and a lot of help at school. He has made amazing progress without chelation or any other anti-autism elixir d’jour.

When it comes to our children, it’s expected that parents will be passionate. When it involves something as misunderstood as autism, that passion is bound to increase exponentially. However, logic, understanding, and basic decency needs to prevail. There are valid arguments on both sides. Autism is not simply an example of diversity. However, it is also not caused by vaccines. It is life-long. It can be managed, but it cannot be cured. Most importantly, acting like self-important judges and juries of other parents does nothing to help anyone’s child. It’s time to knock it off.