Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Autism: a moral panic

with 15 comments

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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Written by alienrobotgirl

6 February, 2008 at 10:39 pm

Posted in Autism

Tagged with ,

15 Responses

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  1. When I was in school (20 or so years ago), there were lots of partially mainstreamed kids with disabilities. I only remember one who would’ve been on the autism spectrum. The others had things like Down syndrome or cerebral palsy, or else were quite mentally retarded. These kids only joined us for things like art classes. I can recall at least one who was physically abusive to the other kids. If kids with that level of disability were allowed to be mainstreamed, I don’t see why at least some kids with autism wouldn’t have been.School aside, I can see a difference in the kids I see on a day-to-day basis. They didn’t always display such obvious signs of autism spectrum disorder. They didn’t used to scream constantly, make repetitive noises, spin in circles, and completely avoid eye contact with those around them. Something different is going on, and I don’t think it’s just because these kids are more visible today.And if things like food additives contribute to the problems of today’s kids, I don’t see why it’s such a leap to suspect vaccines as well. Kids get way more of them today than they did in the past. And the shots still contain potent neurotoxins (mercury is in some flu shots, and aluminum is used as an adjuvant in other vaccines). Whether you eat it or get it injected, a toxin is still a toxin… and it’s not supposed to be in our bodies.

    raw by default

    7 February, 2008 at 3:47 am

  2. It’s nice to see you active on your blog. Personally, with a mouth full of amalgam, I’ve not a lot of time for the mercury theory. But that may just be my bias. It strikes me as very clear that those of us who adopt a LC eating pattern will frequently go to eating real food and with just a little nudge that food will be grain free. So how much of the generally good effects of LC are from the lack of carbs and how much is the lack of the junk which accompanies the carbs is open to negotiation.Although the elderly meat can obviously be a problem for some, I’m lucky with my MAO systems (I think). Actually, I guess I’m not that good socially……… HmmmPeter

    Peter

    7 February, 2008 at 9:39 am

  3. Alien Robot Girl

    7 February, 2008 at 9:15 pm

  4. Hi Raw,I live in the UK, not the US, so my experience of the school system is quite different.As the article points out, the kids who were in those days described as being ‘mentally retarded’ are these days getting diagnoses of autism.As I mentioned, something different is going on, and it’s called food flavour chemicals. PDD/autistic/ADHD children are very sensitive to food chemicals. The more food chemicals you put in the diet, the more children that previously would have been fine on a lower chemical diet start to respond to them.’A toxin is still a toxin’ ignores biochemistry. Toxins are all quite different in their effects on the body. Salicylates and amines don’t work by being toxins – they have very specific effects on prostaglandins and neurotransmitters.Whilst there is ample evidence for the effects of food flavour chemicals on the behaviour of PDD kids, mercury toxicity has been studied extensively and has very different symptoms to those seen in autism. There really isn’t a viable biochemical mechanism by which mercury or other heavy metal poisoning would cause autism. The amounts of mercury involved have to be massive and ingested over an extended period in order to produce behavioural changes through nerve degeneration – and the changes are madness, not autism.

    alienrobotgirl

    7 February, 2008 at 9:37 pm

  5. Could it be something else about the vaccines?I mean you hinted yourself that foods we don’t tolerate could explain the increase. So, could vaccines, could they not?I have read stories by parents where virtually overnight their child is autistic following a vaccination.My daughter clearly does not tolerate them so I have stopped getting her vaccinated. Since then both of my partner’s brothers have a son diagnosed with Autism, both Asperger’s I think.

    Sherrie

    13 February, 2008 at 9:12 am

  6. Hi Sherrie,Reactions to vaccines are normal – even adults get them. This is how the immune system learns to recognise the pathogen.http://www.nlm.nih.gov/medlineplus/ency/article/001389.htm Vaccines don’t cause food chemical intolerance reactions. It’s the genes involved in food chemical intolerance reactions that are also involved in autism.The only thing mercury does is grab hold of a bit of SAMe. A very small bit, because the amount of mercury is equally small.When you have food chemical intolerance and you get ill, you have a reaction to being ill that is the same as if you had eaten some food chemicals because being ill releases histamine and alters arachidonic acid metabolism. This is also true of when you get a vaccine.What parents see when they get their child vaccinated is this chemical reaction. The parent thinks the vaccine caused the autism, but the autism was already present. Just to further ‘confirm’ the ‘causality’, autism first becomes noticeable during the period of development, when the baby fails to develop as expected.When you ask the right questions what you usually find is that the baby in question has already had a history of colic and food chemical intolerance symptoms.There is very little acceptance for the mercury theory amongst adult aspergers and high functioning autistics. This is because we know our families are riddled with similar quirky personalities – and not necessarily those in the direct line.Asperger’s happens in the same families that have asthma, eczema, ADHD, fibromyalgia. There’s no getting away from that. No one ever blames asthma on vaccines.

    alienrobotgirl

    13 February, 2008 at 9:40 pm

  7. This is where I am having trouble.If certain food chemicals, additives and environmental factors could aggravate autistic tendencies then why couldn’t a vaccine?

    Sherrie

    14 February, 2008 at 3:45 am

  8. Because vaccines don’t affect neurotransmitter balance and production in the same way that food chemicals do. There’s no plausible biological mechanism for it.

    alienrobotgirl

    14 February, 2008 at 11:57 am

  9. alienrobotgirl

    17 February, 2008 at 2:47 pm

  10. Interesting…If its not autism then what about those mothers whose child seemingly goes from normal to autistic? overnight following immunisation?Do you think it is something else, a mis diagnosis? or perhaps for sensitive children maybe the immunisation makes them more susceptible to food chemicals?Or purely coincidence?For example on the failsafe groups you hear of people telling how their child was fine and then after say a one time fluoride treatment at the dentist or a course of antibiotics their child starts having problems or at least becomes severe enough to show that they are suffering from food chemicals?

    Sherrie

    18 February, 2008 at 10:43 pm

  11. Sherrie, it is autism. It was autism from birth, but the environmental circumstances weren’t there to make the child appear autistic.I am autistic. I have always been autistic. But surely reading this blog you must have realised the differences between me on failsafe and me off failsafe. On diet: a calm, happy, technical person. Off diet: crying, insomnia, withdrawn, raging. What we stereotypically define as ‘autism’ i.e. social withdrawal is largely governed by serotonin receptor polymorphisms and aberrant glutamate processing. You should see me after I eat glutamates. I am _literally_ autistic in this sense. I become very withdrawn, I sit quietly. I really wish everyone would go away and leave me alone because they are noisy and distracting. I’m spaced out. Sometimes I do stuff like rock or lie on my knees with my head on the sofa.

    alienrobotgirl

    20 February, 2008 at 8:52 pm

  12. The second point – the idea that a trigger causes it and children were just fine beforehand. I’m sure a lot of parents perceive that. But when you quizz them, it turns out their baby had colic or unexplained rashes and upset tummy that they had just dismissed as ‘normal’. Sure, a big dose of chemicals or an infection triggers a big reaction that can sometimes take weeks to die down. I’ve been there. But what are you going to do about it? Avoid ever catching the common cold?

    alienrobotgirl

    20 February, 2008 at 8:57 pm

  13. I do wonder about the vaccine thing. I don’t believe that vaccines cause autism. But the vaccines do have MSG in them. I do wonder if some of these parents really are seeing an “overnight” dramatic change in their toddlers’ behavior. It doesn’t have to be mercury poisoning. What if what these parents are seeing is a chemical-sensitive child’s first exposure to MSG?

    methylethyl

    15 December, 2008 at 1:02 am

  14. You know, when you said this I thought “this must be an internet myth,” but you’re right, it’s totally true.

    “Monosodium glutamate (MSG) and 2-phenoxy-ethanol which are used as stabilizers in a few vaccines to help the vaccine remain unchanged when the vaccine is exposed to heat, light, acidity, or humidity.” Centers for Disease Control, additives in vaccines

    alienrobotgirl

    9 February, 2009 at 12:33 pm

  15. You know, when you said this I thought “this must be an internet myth,” but you’re right, it’s totally true.

    “Monosodium glutamate (MSG) and 2-phenoxy-ethanol which are used as stabilizers in a few vaccines to help the vaccine remain unchanged when the vaccine is exposed to heat, light, acidity, or humidity.” Centers for Disease Control, additives in vaccines

    alienrobotgirl

    9 February, 2009 at 12:34 pm


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