Accepting and indulging differences

“It was time to do some work of our own. If Tyler felt alienated and alone, it was because we had failed to acknowledge—and accept—his difference. I was so focused on the conceit that my son would be like Kevin Costner’s character in Field of Dreams that I failed to see the son I was lucky enough to have. It was time to get to know Tyler.”

This story* from the National Journal reminds me in a different way of Rupert Isaacson’s journey with his autistic son, which he recounted in the memoir The Horse Boy. Isaacson tells an unusual story of riding horses in Mongolia and visiting Siberian shamans in a search of healing. He had early on noticed that his son had an affinity with horses and shamans so decided to immerse himself in what his son was interested in to see if this had a curative effect. Isaacson makes the point that if your son or daughter is interested only in trains and numbers, then indulge their love for trains and numbers by joining them in their pursuits.  Further reading: interesting interview with Isaacson

*PERSONAL ESSAY

How Two Presidents Helped Me Deal With Love, Guilt, and Fatherhood
Guidance from Bill Clinton and George W. Bush taught the author how to accept and understand his son’s Asperger’s syndrome.

By Ron Fournier

Updated: December 4, 2012
10:35 a.m.

November 29, 2012
9:00 p.m.

Temple Grandin movie hints at something polite society avoids

I stayed up all night watching three movies on the plane ride home, one of which was Temple Grandin, an HBO movie starring Clare Danes. Temple Grandin is a scientist at Colorado State University who focuses on the humane treatment of stockyard animals. She is more widely known for also being on the autistic spectrum, showing characteristics of Aspergers Syndrome. Autism, like schizophrenia, used to be widedly seen as a reaction to an unnurturing mother.

The movie begins in 1966 when Temple enters college for the first time and then flashes back and forth through her early life and her growing sense that her Aspergers allowed her greater understanding of the psychology of stockyard cattle. I haven’t read Grandin’s book, so I don’t know how closely the movie followed it, but it is the relationship with her mother that shows that the old view of autism may be making a comeback. This is more a cause for hope, not despair. In one scene in the movie, the doctor giving the original diagnosis of autism, or juvenile schizophrenia, as he called it, when pressed by the mother, said that the origin of autism was thought to be a lack of physical warmth on the part of the mother. The mother replied in words to the effect that she was the same mother to her other child who was fine, but that Temple was unresponsive. Though linking autism to a lack of the maternal mothering instinct has been roundly dismissed in the era of the biochemical brain disease model of the “illness,” lack of physical responsiveness is a childhood clue that someone may develop schizophrenia or autism. Certainly, this was my experience with Chris, and Dr. Abram Hoffer has noted the same kinds of observations from mothers of his patients.

We could conclude that the theory of emotionally distant mothers has been overturned by science, as most of this generation believes. But the movie hints that the emotional bonding connection to autism is valid. It shows this at least two ways. First, the mother (Julia Ormond) definitely comes across as cool. The director could have insisted that the mother be portrayed as palpably warm, the type of mother seen in TV commercials giving out chocolate chip cookies and kissing bruised knees, but instead the mother played it cool. Not that she wasn’t well-intentioned, not that she didn’t love her daughter, but she was educated, rich, and well, cool in demeanor. I’m assuming that Temple Grandin herself had a lot of say in the content of this film and how her mother was portrayed.

The second way of showing that Temple had failed to bond with her mother (it’s a two-way street, of course) is the rather startling way that Temple had of calming herself down when she got violently agitated. She built herself a containment box, just as she had seen in the stockyards to calm down the cattle. Wikipedia describes it below. Note the amusing term “sensory integration dysfunction,” newspeak for mother/child bonding, but trying to make it look like it’s all about the biochemistry.

During Temple’s college years, she conceptualized the squeeze machine, which was designed for herself because she had a sensory integration dysfunction and disliked physical affection by people. The machine hugs both sides of her to calm her down, as she controls the pressure, and it makes her relaxed whenever she becomes tense.

The reason I’m promoting and endorsing, to some degree, this unpopular stereotype of the mother is that the importance of mother/baby bonding has been deliberately sidelined when it comes to understanding and treating autism and schizophrenia. Mothers are understandably sensitive on this issue and, knowing this, pharma has been quick to seize a market opportunity. What have we given up by doing this? Lots. Real help is the most important thing. We are afraid to even look at the family environment, the impact of our ancestors on the present generation, and how we repeat patterns of behavior without even being aware of it. We shouldn’t be so afraid. Confrontation with ourselves can subtly change family dynamics, for the better. There are several psychotherapies that fill the bill in this respect and wonderful sensory integration therapies like the Tomatis Method, that can help the individual flourish in body and mind. But we lose all of that by being overly sensitive to the truth, that mothers (and fathers) do matter in the child’s personal landscape.

Mother/child bonding may be only one contributor to the expression of schizophrenia and autism, but I have noticed that seeking out certain kinds of psychotherapies and body/mind therapies has done Chris a world of good and I get good reports from others about what it did for their relative. Non-pharmaceutical alternatives are a valid avenue to explore. Diet matters, too, though diet is not the focus of this particular post. Temple appeared to exist on yoghurt and green jello. There’s obviously something biochemical going on, that the psychology of nutrition (is there a psychology? there must be!) could address. Many people have reported that their symptoms cleared up or were greatly alleviated by rigorous attention to diet.

This movie may be an example of how the accepted view of schizophrenia and autism over the past fifty years is now changing.

How do you feel about this?

According to yesterday’s New York Times,* Aspergers syndrome is proposed to be struck from the next edition of the DSM, due out in 2012, in favor of the term “autism spectrum disorder.” I suggest that the DSM editorial board hit the delete button and do the same thing for schizophrenia, in favor of a more nuanced perspective, as appears to be the case with the jettisoning of the Aspergers’ label. The DSM proposed change recognizes that there are different levels of functioning within autism, and that there are often other accompanying health problems that need to be treated.

This is a step forward, at least. Why not extend the same courtesy to schizophrenia, which seems to be on the bipolar, depression, mania, OCD spectrum? Although I am most definitely not in favor of saddling anyone with a psychiatric diagnosis, taking on the likes of the American Psychiatric Association, publisher of the DSM, will have to be chipped away at over time. What exactly is the difference between Aspergers, which can be terribly taxing on the individual and the family, especially when the child is young, and schizophrenia, which often allows a trouble free childhood and academic success, often brilliance, but provokes a major crisis in the adolescent years and early twenties? Well, for one, Aspergers is a recent addition to the DSM (1994) and it is easy to give up something you haven’t become entrenched in. (I had actually never even heard of it until my son was diagnosed with schizophrenia.) Schizophrenia, in contrast, functions as both the the holy grail and cash cow of the mental health industry. Wait, no, I take that back about the holy grail part. The APA and pharmacology aren’t interested in curing schizophrenia. It’s too much of a cash cow. They just pretend they are interested.

“Asperger’s means a lot of different things to different people,” Dr. Catherine Lord is quoted as saying. “It’s confusing and not terribly useful.” (I say the same goes for schizophrenia.)

The New York Times article quotes the efforts of the Aspergers’ lobby to widen the understanding of Aspergers to include health issues that accompany this diagnosis. The autism lobby has done an excellent job of bringing the message to the psychiatric community that there are underlying health issues that can be addressed, very often successfully. Many people say exactly the same thing about schizophrenia. I won’t quibble about deleting one more meaningless diagnosis in the DSM, but while they are at it, they should treat schizophrenia in the same way.

Unfortunately, the diagnosis of schizophrenia is too big a diagnosis for the APA to relinquish. That they will hit the delete button for schizophrenia is unlikely, given that the latest APA news to be posted on its site is “Brain MRI May Pinpoint High Psychosis Risk.” Nonetheless, let’s keep in mind that the gay rights lobby forced it to delete homosexuality from the DSM in the early 1970s. It can be done.

It can be done, were it not for the fact that the public seems to have bought the APA’s and NAMI’s negative view of schizophrenia. There is no powerful lobby for schizophrenia taking the same position that the autism lobby has succeeded in doing. This means that the battle to normalize schizophrenia on the spectrum of human conditions and delete it from the 2012 DSM is lost before it has begun due to a lack of organized opposition to the prevailing viewpoint.

“All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public.”

Mark your calendar for January 2010 and let them know that Aspergers isn’t the only meaningless label. Here’s the APA’s website address. http://www.psych.org/

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http://www.nytimes.com/2009/11/03/health/03asperger.html?hpw