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.

Another urban legend: the old grey man’s genes ain’t what they used to be

My husband (Ian) sent me a link re Father’s Age Is Linked to Risk of Autism and Schizophrenia.” Well, of course, I gently reminded him that this is hardly breaking news, as these findings keep resurfacing at regular intervals. I recalled that he was the one who first brought the old man/schizophrenia information to my attention a few years ago. This latest “breaking news” has also become a thread in the ISEPP discussion forum. Member Randy Cima responded that “This is another nonsense psychiatric geneticist “study. You first have to buy the idea that “autism” is a “disorder,” – it isn’t – then you have to buy the idea that genes cause “disorders” – they don’t.

Dr. Cima has written an interesting article refuting causal connections between genes and behavior.


According to the the author’s bio, “For 35 years, Dr. Cima was the CEO of several MH agencies for children in California. He is a vocal opponent of psychotropics for kids. In his last agency, 26 of 30 children were medicated. In 3 years the number was 6 when he retired. He now writes and lectures on the subject.”

Excepts from article:

If you are among those who periodically declare, when talking about human behavior, that “it’s genetic,” or “it’s hereditary,” or “it’s in the gene’s,” please, my friend, be aware you are perpetuating this growing – and so far completely false – urban legend. Heed Professor Garfield’s cautionary words. Please stop. You have no scientific reason to continue this growing falsehood about our behavior.

Also, please consider, “psychiatric geneticists” do the vast majority of these “studies.” Please make room for your well-placed disdain for “modern psychiatry” to include this growing industry. Why do they do this? You know why. To develop “medications” to provide “treatment” so that you will buy them to “fix” those “bad genes.”

There’s a gene for everything,” one of us said. “Google it,” someone else said, so I did, on my very smart Smartphone. And that’s how it started. Someone would think of a human trait, condition, emotion – anything – and I would insert that word and add “gene.” For example, someone said “depression” so I googled “depression gene” and looked at the hits. You know how this works. I’d pick the most recent article or website, open it, and read the first few paragraphs, and add it to the list. Running out of ideas, we’d try anything. Someone yelled out “fairness!” Just as quickly, someone else said: “Fairness!? Oh come on! Fairness can’t be in a gene!”

Apparently, it can.

There it was. The “fairness gene.”

33. GAY MICE – 7/14/10 (POPSCI). A group of Korean geneticists has altered the sexual preferences of female mice by removing a single gene linked to reproductive behavior. Without the gene, the mice gravitated toward mice of the same sex. Those mice who retained the gene, called FucM, were attracted to male mice. (FucM is short for fucose mutarotase.) FULL ARTICLE – http://www.popsci.com/science/article/2010-07/has-gay-gene-been-found-female-mice

53. PREAMATURE EJACULATION – 12/1/08 (NewScientist). The volunteers in Dr. Marcel Waldinger’s study were 89 men who had so-called primary premature ejaculation, meaning they had always suffered from it from their first sexual contact onwards.For a month, their female partners were asked to use a stopwatch at home to measure the time until ejaculation each time they had intercourse. [Marcel D. Waldinger is a neuropsychiatrist and head of the Department of Consultative Psychiatry and the outpatient Department of Neurosexology at Leyenburg Hospital in The Hague in The Netherlands.] FULL ARTICLE – http://news.bbc.co.uk/2/hi/health/7657092.stm  

Rossa’s point:
Yes, you might protest, but schizophrenia and autism are serious mental health disorders, unlike these rather frivolous examples above. There must be a gene causing these! Let’s think of your objection  another way. Revenue from drugs for schizophrenia prescriptions filled by people who are convinced, in spite of the evidence to date, that schizophrenia is a genetic and biochemical brain disorder, no doubt fund the vast amount of these other studies. The so-called genetic disorders that inspire the most fear (e.g,. premature ejaculation) will be the ones that eventually find their way into the drug pipeline.

Working the system

I just left a comment over at Michael Cornwall’s Mad in America blog post. In my comment I linked to an excellent article in the Los Angeles Times about the reasons behind the vast surge in the autism diagnosis.

The LA Times article provides plausible reasons for the jump in autism rates that are not what meets the eye. According to the author of the article, autism has boomed in large part because parents want access to state funded services, and they talk amongst themselves about how to work the system to their advantage.

Three-year-old Benjamin was nothing like the severely impaired children Bailey had seen in clinic waiting rooms. But he didn’t speak much, was mesmerized by ceiling fans and liked to be left alone.

On the day of his evaluation by specialists from the L.A. Unified School District, Bailey purposely didn’t feed him breakfast. “I wanted him to look as bad as possible,” she recalled. “It’s not like he didn’t deserve services. I just wanted to stack the odds in our favor.”

It worked. Benjamin threw a tantrum. Over the next three years, the district paid for speech therapy, motor skills training and the attention of a one-on-one aide throughout the school day.

….. Peter Bearman, a sociologist at Columbia University, has demonstrated how such social forces are driving autism rates.

Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.

Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.

Living within 250 meters boosted the chances by 42%, compared to living between 500 and 1,000 meters away.

The reason, his analysis suggested, was simple: People talk.

They talk about how to recognize autism, which doctors to see, how to navigate the bureaucracies to secure services. They talk more if they live next door or visit the same parks, or if their children go to the same preschool.

The influence of neighbors alone accounts for 16% of the growth of autism cases in the state developmental system between 2000 and 2005, Bearman estimated.

In other words, autism is not contagious, but the diagnosis is.

I thought about posting the L.A. Times article when it appeared in December 2011, but decided not to at the time. I try to stick to the knitting on my blog, meaning I stick to schizophrenia as much as possible, and weigh the pros and cons of posting information about other diagnoses, even though, there is much in common between many mental health diagnoses. I decided to post the link today because both the Cornwall article and the L.A. Times article are excellent contributions to our growing understanding of how social factors shape trends in mental health diagnoses diagnoses.

Cornwall writes:
When I-Ward closed I was transferred to an adult clinic as a therapist for about 3 years until the bio-psychiatry, big pharma agenda made possible by NAMI testimony got the statewide Bronzon legislation passed. That law said that so-called severely and persistently mentally ill adults should be given priority for the allocation of adult services that are funded by the state and federal government.

It was supported by bio-psychiatry claims based on their incurable brain disease model that asserted that consumers were best served to be maintained by medication and case management. The law didn’t say therapy had to be eliminated, but the statewide cowardly mental health director’s association saw the handwriting on the wall and decided to announce the wisdom of eliminating therapy ASAP to placate NAMI, and the growing power of Psychiatry in every county system.

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.

Reading between the lines for help

I must say I am beginning to get weary of reading between the lines when it comes to finding helpful therapies for schizophrenia. What I mean by this is that there are many potentially useful therapies out there for autism, dyslexia, attention deficit disorder, pervasive developmental disorder, depression, etc. Rarely does the word “schizophrenia” appear in the list of conditions treated. So, once again, I gotta make the link myself. It’s not like these problems are really all that different, so why does schizophrenia perpetually fail to make the list?

Schizophrenia deserves better. I am pleased that there is now serious focus on autism , but let’s also keep in mind that schizophrenia is more prevalent in the population, and has serious social and economic consequences. In many ways, schizophrenia and autism are not that different, so why this disparity of focus? Is it because schizophrenia happens to adults or is it because schizophrenia is still thought of as untreatable, or both? If you really pay attention, the child who goes on to develop schizophrenia as an adult shares at least some of the traits in one or more of these other conditions.

Chris is currently doing the Tomatis Method. He goes to the center at 9 a.m. to avoid the crush of children at the end of the school day. Tomatis is a method of auditory training incorporating the music of Mozart and Gregorian chants. I had to read between the lines to see if it could be useful for schizophrenia. Apparently, it can be. I understand that the one and only article written by Dr. Alfred Tomatis on his method’s applicability to schizophrenia is in French and has not been translated for a wider audience. I will write more about the Tomatis Method later when I get a better feel for any observed benefits.

Reparenting and Jacqui Schiff

Another proponent of the bad parenting school of thought was social worker Jacqui Schiff, who took a number of schizophrenic young people into her household in the early 1970s to “reparent” them, using Transactional Analysis techniques that she had learned from Dr Eric Berne. All My Children, published in 1970, provides a graphic account of the struggles she and her husband went through in the process of reparenting. She is scathing about the failure of parents to send the right messages to their children, which, she claims, results in their subsequent development of schizophrenia. Despite the fact she is acquainted with the parents of her charges in only the most superficial ways, she feels qualified to pass judgment on them, while making the same questionable judgments in her reparenting that parents make in parenting. She is particularly harsh on the mothers.

This harsh view of the parents, and in particular the mother, was shared by many psychiatrists at the time, notably Dr. Loren Mosher, Dr. Leo Kanner and Dr. R.D. Laing. Unfortunately, blaming the parents played right into the hands of drug companies. Why do I say this? I say this because drug companies don’t blame the parents. Drug companies claim that schizophrenia is a matter of biochemistry, by implication not by bad parenting.

By labeling schizophrenia a brain disease, not a result of bad parenting, psychiatrists and drug companies have made it easier for parents to say, “Look, it’s not my fault my child has schizophrenia; my child actually has a brain disease.” They have also ensured fat profits for pharmaceutical companies for years to come by this particular logic. What parents, feeling bad enough about the situation, would want to believe that it was their fault, especially if they had raised other well-adjusted children?

At the same time, and this is important, why would parents prefer to believe that their son or daughter has a damaged brain? Why would anyone want to believe that they were somehow “damaged”? That idea is horrible. It is a hopeless view. It is locking the young person into a lifetime of misery and dependency on drugs. There are many websites devoted to showing computer images of the damaged schizophrenic brain. One such website shows pictures of early and late gray matter deficits in schizophrenia. “But”, proclaims the website, “while there is a significant loss of brain gray matter, this is not a reason to lose all hope.” (see link below) Yes, according to the website, these deficits may be reversible and scientists are hard at work on inventing a miracle drug that could potentially reverse these cognitive declines.

I began to appreciate these out-of-favor psychiatrists (and one social worker) after I decided that there was no way I was going to believe that Chris had a damaged brain. The more I read, the more I agreed with them. They were downright interesting. They weren’t trying to toe the politically correct line. They criticized the pharmaceutical industry and psychiatrists for entering into unholy alliances. For all of the emphasis on the pharmaceutical approach, patients weren’t getting much better and of course, there were the side effects. All of this struck a chord with me.

They seemed to be in favor of schizophrenia as giving added value to the world. R. D. Laing believed that schizophrenia was a creative process leading to spiritual and emotional healing and noted that other cultures view schizophrenia as a state of trance, which could even be valued as mystical or shamanic. Isn’t finding “value” in schizophrenia more likely to lead to healing?

I looked into Dr. Leo Kanner’s work again and realized that, as with much of our sound-bite-obsessed culture, even in 1960 his remark about refrigerator mothers was probably blown out of proportion. Dr. Kanner had gone on to say something that shows an understanding that the origins (he was referring to autism) might go further back than the parents have control over. “The children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of early parental relations with our patients…We must, then assume that these children have come into the world with innate inability to form the usual biologically provided affective contact with people.” He then challenges the mothers to turn against the psychobabble of the contemporary psychiatrists in favor of their (the mothers’) innate common sense: “[R]egain that common sense which is yours, which has been yours before you allowed yourselves to be intimidated by would-be omniscient totalitarians.” Well said, Dr. Kanner!

http://www.schizophrenia.com/disease.htm

It’s likely I am at least part of the problem

I’m going to have to come clean early in my blog. For some time now it has been no longer permissable to blame the parents especially the “mother” for a child’s schizophrenia. But surely it would be remiss of me to attribute my son’s problems entirely to him. I am operating on the assumption that I can help his healing if I find out what it is about me that has affected him. We have heard over and over again that the parents are not to blame. Maybe so, but since schizophrenia emerges in the teenage years, parents are the people who have controlled the environment up until then.

Dr. Loren Mosher was a former chief (1969–1980) of the Center for Studies of Schizophrenia at the National Institute of Mental Health. He blamed schizophrenia on bad parenting, typically by the mother: “There are two aspects of family life that have been consistently highly associated with what’s called schizophrenia. One has been dubbed ‘communication deviance.’ It’s simple. Just means that when you sit with these parents, you can’t figure out what the hell it is they’re talking about. They can’t focus on things. You can’t visualize what they say. They go off on tangents. They are loose in the way that they think.” He stated that the other thing that was clear from studies was that “when families are very hostile to and critical of their offspring, that’s not good for them.”

Dr. Mosher’s patronizing view of the parents echoes the view of Dr. Leo Kanner, who wrote the first English language textbook on child psychiatry in 1935. In it, he adopted the term “infantile autism” to describe a set of behavioral characteristics of certain aloof children. “All too often this child is the offspring of highly organized, professional parents, cold and rational—the type that Dr. Kanner describes as “just happening to defrost enough to produce a child.” Such a mother became popularly known as a “refrigerator mother”, a term used for mothers of autistics but also of schizophrenics.

An article in the British Journal of Medical Psychology (1961) claimed: “In the interviews they manifested chaotic forms of communication while sounding superficially sensible. . . The mothers of schizophrenics did not adapt well to external reality, as shown by poor reality testing, marked denial, and projection. Disorders of thought were prominent, giving an impression of ‘diluted schizophrenia’ in these mothers.”

I am willing to entertain the thought that I may have communication deviance while sounding superficially sensible. I have always thought of myself as on track and a cut to the chase type of person. Nobody has ever accused me of not being on track. Come to think of it, my university English professor once said that I write well, but vaguely. Hmm. Since I started paying attention to this flaw, I have stopped using vague terms like “seems to” and “appears to”. I am trying hard to be more definitive, if only to avoid an impression of diluted schizophrenia. There are enough people around me at work who give off this impression.

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1. The Child Is Father, Time (July 25, 1960), http://www.time.com/time/magazine/article/0,9171,826528,00.html
2. http://www.pep-web.org/document.php?id=paq.031.0431a