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.

2 responses to “On Autism: “Neurodiversity” vs. “Cure”

  1. As a woman with Autism, I agree that children with Autism need to be protected and therapy is also very helpful. If I did not receive the therapy and was left in an asylum, I would not be here right now. I honestly think there needs to be a line on what would be considered controlling the Autistic person’s true self and behavior that is unacceptable. For example, “stimming” should be considered acceptable if it doesn’t physically harm the child and that certain social behavior are unacceptable like assaulting a woman. I have seen many instances where Autistic and Aspie men get away with VERY misogynistic behavior because that somehow is their “true Autistic self” and use their Autism as an excuse for their behavior.

    • Teaching my son boundaries is something my spouse and I are working hard on. One day, he kissed a girl at school. She didn’t take offense, but it bothered me. It bothered me that he could grow up thinking that it’s okay to make romantic or sexual overtures that were not welcomed by the woman. My spouse and I have tried to explain to him that kissing is fine, but not when you don’t know someone. When you don’t know them, you need to ask first. Admittedly, it’s a difficult concept. In our family, we kiss each other a lot. So, he doesn’t know that it’s not okay in all circumstances. It’s up to us to teach him that, the same way we teach him how to safely cross the street.

      He’s 12 now, and he’s beginning puberty. He has taken to rubbing himself on furniture and the like because it feels good. Again, I’m trying to teach him that he can do that, but he shouldn’t do it in front of others. It’s something he can do in his bedroom, but it’s not acceptable or fair for him to engage in sexual behavior that others may not be comfortable seeing.

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