Saturday, May 31, 2014

Rethinking the Definition of Autism and Aspergers

By Elise Ronan – The Times of Israel - Elise is the parent of two youngmen on the autism spectrum. She has been a volunteer special education advocate in …

Once again we have a mass murder and once again the media-whores are trying to blame it on aspergers, guns, misogyny and “white privilege.” When the reality is that the issue is mental illness and how it is treated, or not treated, in the United States. The family was fast to let the world know that their sociopath-narcissistic-highly disturbed-son had been diagnosed with aspergers. Not certain why that is even relevant. It is not that this family didn’t try to get the authorities involved. They actually alerted the police, who instead of searching his apartment or trying to get him involuntarily committed, found this murderer charming. Overly charming, by the way, is how most would describe every sociopath. Yet the question becomes, what is the point of letting everyone know about the autism diagnosis?

Yes, aspergers is the diagnosis of the moment. When doctors can’t figure out what category their patients fit into, they reach for something that is all encompassing. It just so happens that this decades all encompassing mental health diagnosis is aspergers. Before that it was ADD. Before that…who knows, but it was something. The problem too, is that psychiatry is a science that is not necessarily quantifiable in the same sense that something physical is quantifiable. Psychiatric definitions and understanding change as society changes. The “powers that be” in the psychiatric community consistently alter their view of what is a mental health disorder, and constantly change their opinion on what is, and is not, a cause for mental health concerns.

An additional problem that you have in the community is that so many of these book-learned people have never really dealt with autism or aspergers. They only read a book; took a class; heard a lecture. But they have no real experience in dealing with anyone with autism. A lot of times they simply look into the DSM and pick out something that sounds good and may be applicable to the situation at hand, something they simply cannot define for certain at the moment. That is exactly what happened with the boys when we visited one particular therapist.

Even though they had been given the dx of aspergers, when this particular therapist filled out his forms for insurance, he went into the DSM and looked for the dx that listed what he thought was more applicable to the boys. I argued with him that they had a relevant diagnosis that was appropriate. But he decided he knew better because as he pointed out to me, the DSM listed 4 applicable characteristics of “autism” instead of aspergers, which as far as he decided was more appropriate to the boys. He had never actually worked with, or had experience with, anyone with autism or aspergers. We went to him because he was used to working with adolescent males and highly recommended for that purpose. I had not realized until that moment that there really was a huge difference in approach when dealing with adolescent aspergeans and NTs.

Yes; we ended up leaving that therapist, but not because of this difference of opinion. When my younger son was having trouble with his 5th grade special ed teacher, instead of defending my son, he supported the teacher. Instead of coming up with some relevant classroom procedures that needed to be put into practice for my son, or relevant organizational skills that he had to learn, and that the teacher had to work on, this therapist decided that the teacher couldn’t be incompetent. The fact that he was having issues according to this therapist, had to mean that my son needed some heavy medication like risperdal or even an even stronger antipsychotic. (FYI- I am not against medication. I am against unnecessarily medicating.) According to this therapist there was no way that the teacher could be a gross incompetent,even though he had never met her, spoke with her or interacted with her on any level. Someone who is incapable of seeing the failings of another “professional,” is not someone you want working with your child.

As a note: I had not been told by the school district that this particular special ed teacher had been informed earlier in the year that she was not receiving tenure due to not meeting teaching standards. So she not only didn’t do her job vis-a-vis my son for the year,  but his entire class. (He was a fully included student with special support. And because the support was inadequate the entire class suffered.) In fact, she actually lost my son one day as well and tried to blame it on other people. The district did force her to go on medical leave half way through the year and put in a substitute, which helped the situation greatly. But unfortunately he had already been set back tremendously in his development. It took years and some very hands-on competent teachers to bring him back into the groove.

Meanwhile, I have been having a change of mind. The fact that the definition of autism/aspergers has been reworked by the DSM may not in the long run be entirely bad. I know that the aspergers community is very angry and there are psychiatrists who are unhappy about the methodology used to decide upon these new criteria. But perhaps when it is harder to diagnose someone with aspergers/autism, therapists and psychiatrists will actually have to figure out what is truly going on with a patient and not just decide that everyone with social issues must have aspergers/autism.

Autism is not simply about someone not understanding social issues. Autism is an entirely different brain wiring- a different operating system so to speak. It means that people see the world differently and interact with the world differently than an NT. It means they learn differently and work differently. It means they are able to think outside the limited box that the world has set up for itself. Autism does not mean that those with the dx are sociopathic, psychotic, violent or devoid of the ability to function within society on a healthy basis. These are all very different mental health issues. Quite frankly no, every sociopath is not an aspergean and every aspergean is not a sociopath. In fact one has nothing to do with the other.

The problem that you face is that the psychiatric community has made a habit of giving our children a list of dxes. These co-morbid issues are what cause the problems in society. While our children may have aspergers, they can also have OCD, anxiety, ADD, bi-polar, schizophrenia and (sadly) may even be a sociopath. But premeditated violent tendencies associated with the most extreme forms of these mental health issues have nothing to do with autism. They have to do with the comorbid issues. In fact, most of these co-morbid issues also do not result in violence or outward aggression either.

The interesting issue is whether under the new DSM definition would any of those with the most severest form of mental health issues even have a comorbid dx of any kind of autism? Would the psychiatric community be forced to actually reevaluate their patients to ensure that there is a real review of what is going on with their patients instead of dumping them into the mental health issue of the moment? Will there be more oversight and more accountability of the psychiatric profession instead of the media and society going  “autism” monster hunting?

Frighteningly, we have to be ever vigilant that the “witch-hunters” do not once again try to come after our children because of the reporting by an irresponsible media, police inaction and the psychiatrists who did nothing to stop a murderous rampage. My boys have no problem with telling everyone they have aspergers. They are proud of who they are. The problem is, that society’s ignorance about mental health and autism causes others to have problems with them, and it is this lack of societal education that is the real threat to their future.

A version of this blog post originally appeared in Raising Asperger’s Kids

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