Autism: a moral panic
When the Centers for Disease Control announced last year that an average of one out of 150 children had autism, it convinced many people that America was seeing an explosion of autism cases.
Before the 1990′s, the official estimates were one autistic child out of every 2,000 to 5,000 children. Several autism advocacy groups took that as proof that some environmental toxin, such as mercury preservative in vaccines, had caused a huge spike in the autism numbers.
But there are now intriguing indications that most if not all of the autism increase is the result of broadening the criteria for the diagnosis and identifying children with autism who would have been labeled with a different diagnosis in the past.
A 2006 study in the journal Pediatrics found, for instance, that the national increase in identified autism cases in elementary schoolchildren between 1984 and 2003 had been paralleled by a similar decrease in the number of children labeled as retarded or learning disabled.
Paul Shattuck of Washington University in St. Louis, the lead author of the study, wrote last year that “in 44 of 50 states, the increase in autism was completely offset by a decrease in the prevalence of children considered ‘cognitively disabled’ or ‘learning disabled.’ “
Some very outlandish claims have made about the supposed ‘rise’ in autism from many quarters – some have even sneaked their way into Wise Traditions, a publication from the Weston A. Price foundation that I used to respect.
As someone who is a fourth generation asperger (that’s a family history of roughly a century, long before anyone had invented the term), and a sociologist, I would define the media rhetoric surrounding the supposed ‘rise’ in autism as a moral panic – a form of mass hysteria. Examples of other moral panics include, gay sexuality, the millenium bug, foot and mouth disease, single mothers, immigrants ‘taking over’, youths (‘hoodies’) who hang out on the streets, and bird flu.
Some of the features of a moral panic include the demonisation of a subgroup within society and the emotive language used to describe the phenomena. The media usually lead and fuel moral panics with the use of unrepresentative and extreme portraits of the phenomenon in question, and the misuse of statistics. If you are autistic and reading this, you are probably as sick as I am to read offensive and bigoted descriptions of autism as ‘devastating’, ‘monstrous’, ‘robotic’, ‘destroying children’s and parent’s lives’ and ‘stealing children’s soul’s’.
In an interview this week, Dr. Shattuck said that because of changes in the definition of autism and how it is measured, it is impossible to know how much it may have increased from past years.
But his study certainly suggests that “diagnostic substitution” — labeling someone as autistic today who would have been labeled as retarded 30 years ago — is a substantial part of the picture.
Dr. Shattuck’s study isn’t the only one showing this trend.
In a 2004 study, Lisa Croen of the Kaiser Foundation Research Institute in California and her team found that the increase in children diagnosed with autism in that state between 1987 and 1994 was almost exactly paralleled by a decrease in those diagnosed with retardation.
In case you didn’t know, the Kaiser Foundation Research Institute is THE most trustworthy, independent, and thoughtful scientific institutions in existence. Kaiser operates independently of financial influences and makes highly critical scientific reviews and examinations of data based on extremely rigorous critera rarely employed by other scientists.
Nancy Minshew, the director of the University of Pittsburgh’s Center for Excellence in Autism Research, said last week, “I used to think there were more cases [than in past years], but I don’t think so any more.” She is now convinced that the higher numbers are “not an increase in the number of cases, but are an improvement in recognition.”
In past decades, she said, it was often hard to get doctors or schools to diagnose higher-functioning children as having autism. They were often labeled as having “behavior difficulties.”
Dr. Shattuck said other epidemiological studies have shown that the rate of severe autism has stayed steady at about one to two children per 1,000, so that the main part of the increase to an estimated six to seven children per 1,000 has come in the milder, higher-functioning forms of the disorder.
That points partly to the broader definition being used for what are called Autism Spectrum Disorders today, he said.
“When we talk about autism spectrum disorders,” he said, “we’re talking about kids who have very different symptoms. Some are severely retarded; some have high IQs; some have pathological shyness; others want to have contact but are socially awkward.”
In other words, the definition of autism has expanded to include asperger’s syndrome. Asperger’s syndrome was only added to the DSM-IV in 1994. At that point it became an official syndrome and millions of people who had previously been classified as normal were suddenly considered autistic. So when people talk about the ‘massive rise’ in autism since the early 1990′s, they are in fact talking about the ‘massive rise’ in asperger’s syndrome. With awareness comes diagnosis. A bit of a no-brainer really. Left Brain Right Brain has numerous good articles on bad statistics.
And when people say they don’t remember seeing so many autistic children when they were growing up, or ask where all the adults with autism are, there are two possible explanations, Dr. Minshew said.
One is that many autistic children in the past were never sent to school. In what she called the “Forrest Gump era, you didn’t even go to school, or you went to a totally separate school.”
Indeed they do. My aunt worked at a special school for many years until it was closed down. At the time it was closed under the misguided community integration policy, it was one of the few surviving special schools in Nottinghamshire. The children there received special therapies and had chill out rooms. I’ve no idea what happened to those children. You can’t put a child who rocks and headbangs, cannot speak, and yes, smears poo, into a mainstream classroom. At least, not unless you want them to be abused by their fellow students.
The other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.
There is even a kind of logic to that, Dr. Minshew said, because some of the hallmarks of schizophrenia — behaving oddly, a lack of facial expressions, poor eye contact, speaking in a monotone and using fewer gestures than normal — are “essentially the same” in both autism and schizophrenia.
David Mandell, an epidemiologist at the University of Pennsylvania medical school, recently surveyed the adult patients in Norristown State Hospital in Eastern Pennsylvania, nearly all of whom are labeled schizophrenic, and found that about 20 percent of them meet the behavioral criteria for being autistic.
Donna Williams was one of them. She was diagnosed autistic in adulthood, after a childhood where she was believed to be deaf, and labelled psychotic and disturbed. Neurologically and genetically speaking, autism and schizophrenia are not that far removed. One of the genes in common is a variant of Catechol-O-Methyltransferase, disproportionately found in schizophrenia, bipolar disorder, and autism.
While he believes misdiagnosis in the past explains a part of the increase in autism numbers, Dr. Mandell also believes the growth has been too great to be accounted for just by continuing genetic abnormalities.
“The increase is probably too fast to be genetics,” he said, “so there probably is something that is environmental, but there is nothing to suggest it’s the vaccines.” Studies raise questions about increase in autism cases
Let me see… what has changed about our diet since the early nineties? Well, schoolchildren have been eating an increasingly additive-heavy diet. During the same period the government has increasingly promoted the consumption of fresh fruits and vegetables, and these fruits and vegetables have increasingly been picked before they are ripe, and the varieties used have increasingly been bred for resistance to pests. All of these factors increase salicylate consumption. At the same time, calcium propionate started to be added to bread products and is now ubiquitous. Simultaneously big supermarkets took over the meat supply and began the mass vacuum-packing of meat. It is quite normal for meat to be three months old before it is eaten now – something that taxes even the average person’s resistance to amines. So amines and glutamates have increased too.
From my own perspective, I was raised on a very bland diet of cereal, bread, milk, fresh meat from the butcher’s, and potatoes. I refused to eat fruit except for the rare banana, or in the form of Ribena blackcurrant juice, and I wouldn’t eat most vegetables with the exception of cauliflower. I didn’t taste broccoli until I was perhaps eleven or twelve years old. This was around the time that mum and dad decided we should all eat more interesting and experimental foods. Like pizza and spaghetti bolognaise. Yes, you did read that right. Those were exotic foods to us. When I was thirteen years old we were all diagnosed with fibromyalgia. During the same period my ability to socialise declined to almost zero. I spent most of my teenage years as a voluntary mute.
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