No one disputes that diagnosed rates of autism have increased enormously over the past 15 years or so, around the world. However, other people write it off as essentially a cultural phenomenon: we’re getting better at detecting the disorder and more willing to label kids as having it.
I subscribe to the latter view, but there’s very little hard evidence for it. To prove that diagnostic changes have occurred, rather than a true increase in autism, you’d have to know what would have happened to today’s kids, say, 20 years ago. Would they have been diagnosed? We have no way of knowing. At least not until someone invents a time machine.
According to authors Soumya Mazumdar and colleagues, there’s a zone of high autism prevalence in California, areas where kids aged 0-4 years old are more likely to be diagnosed with the condition. The epicentre is L.A.; there’s actually three overlapping hotspots centred on Santa Monica, Alhambra and North Hollywood.
In these clusters, autism rates are between 2 and 6 times higher than the rest of the state.
This is the saddest moment in my 45 year career of studying, practicing, and teaching psychiatry.
The Board of Trustees of the American Psychiatric Association has given its final approval to a deeply flawed DSM 5 containing many changes that seem clearly unsafe and scientifically unsound. My best advice to clinicians, to the press, and to the general public – be skeptical and don’t follow DSM 5 blindly down a road likely to lead to massive over-diagnosis and harmful over-medication.
Just ignore the ten changes that make no sense.
Brief background. DSM 5 got off to a bad start and was never able to establish sure footing. Its leaders initially articulated a premature and unrealizable goal- to produce a paradigm shift in psychiatry. Excessive ambition combined with disorganized execution led inevitably to many ill conceived and risky proposals.
These were vigorously opposed. More than fifty mental health professional associations petitioned for an outside review of DSM 5 to provide an independent judgment of its supporting evidence and to evaluate the balance between its risks and benefits. Professional journals, the press, and the public also weighed in- expressing widespread astonishment about decisions that sometimes seemed not only to lack scientific support but also to defy common sense.
DSM 5 has neither been able to self correct nor willing to heed the advice of outsiders. It has instead created a mostly closed shop- circling the wagons and deaf to the repeated and widespread warnings that it would lead to massive misdiagnosis. Fortunately, some of its most egregiously risky and unsupportable proposals were eventually dropped under great external pressure (most notably ‘psychosis risk’, mixed anxiety/depression, internet and sex addiction, rape as a mental disorder, ‘hebephilia’, cumbersome personality ratings, and sharply lowered thresholds for many existing disorders). But APA stubbornly refused to sponsor any independent review and has given final approval to the ten reckless and untested ideas that are summarized below.
Yes, I am going to talk about…autism. The last time I did so I was inundated with people trying to convince me of the dangers of immunizations and their causal link to autism. I really, really, really don’t want to go anywhere near that one.
No, I am not going to talk about the cause of autism; I am going to talk about my observation of the rise of the diagnosis of autism, and a plausible explanation for part, if not most of this fact. The thing that spurs me to write this post is a study by the CDC which was quoted in the NY Times:
The new report estimates that in 2008 one child in 88 received one of these diagnoses, known as autism spectrum disorders, by age 8, compared with about one in 110 two years earlier. The estimated rate in 2002 was about one in 155.
The rise in numbers is cited as one of the main evidences for some external source – a new thing in our environment – that is causing this rise. The article, however, gives another clue:
The frequency of autism spectrum diagnoses has been increasing for decades, but researchers cannot agree on whether the trend is a result of heightened awareness, an expanding definition of the spectrum, an actual increase in incidence or some combination of those factors. Diagnosing the condition is not an exact science. Children “on the spectrum” vary widely in their abilities and symptoms, from mute and intellectually limited at one extreme to socially awkward at the other.
Children with such diagnoses often receive extensive state-financed support services — which some experts believe may have contributed to an increase in numbers.
That last sentence holds the golden ticket. What would make me think this? My experience.
DSM 5 has suddenly become a star press attraction. In just the last three weeks, more than 100 news stories featuring DSM 5 appeared in major media outlets located in more than a dozen countries. (For a representative sample see Suzy Chapman’s post on Dx Revision Watch.) The explosion of interest started with a flurry when The New York Times published two long DSM 5 articles and three DSM-5-related op-ed pieces, all within a few days. An unrelated press conference in London then generated a widely distributed Reuters story and also many independent pieces. Several other reporters had also been working on their own DSM 5 stories that just happened to arrive at the same time.
The intense press scrutiny of DSM 5 is really just beginning. I know of at least 10 additional reporters who are preparing their work now for publication in the near future. And many of the journalists whose articles appeared during these last few weeks intend to stay on this story for the duration — at least until DSM 5 is published, and probably beyond. They understand that DSM 5 is a document of great individual and societal consequence — and that its impact and risks need a thorough public airing.
The press coverage has been almost uniformly and devastatingly negative. The two most common themes are 1) DSM 5 will radically expand the boundaries of psychiatry, medicalising normality and leading to unneeded and harmful treatment; and 2) DSM 5 decisions are being made arbitrarily, based on narrow input and lacking sufficient scientific support. The DSM 5 proposals that have elicited the most concern are changes in the definition of autism and the expansion of major depressive disorder to capture much of normal grief.
The articles sometimes contain small inaccuracies and sometimes emphasize peripheral issues. And the most dangerous DSM 5 proposals get far too little mention. I will discuss in later blogs how DSM 5 will worsen the over-diagnosis of attention-deficit disorder and the over-prescription of antipsychotic mediation. But the press has gotten the main points just right and somehow manages to see the risks of DSM 5 much more clearly than do the people working on it.
Reports of autism cases per 1,000 children grew dramatically in the US from 1996 to 2007. Source: Wikipedia.
It’s hard to imagine more chaos in the world of autism than what we see happening right now. Autism is more and more in the public spotlight. The numbers are huge and no one can explain them. Since 2009 we’ve been told that one percent of children have autism. Among boys alone, it’s almost two percent. Mainstream medicine can’t explain the stunning increase in a once rare disorder. For years health officials gave doctors credit for all the autism everywhere. They said it was the result of “greater awareness” and “better diagnosing.” Children who were mislabeled as something else were now correctly called autistic. The criteria for diagnosing autism was laid out in the Diagnostic and Statistical Manual of Mental Disorders (DSM)and a child with symptoms would be placed somewhere on the autism spectrum, as it came to be known. This included very high functioning autism and Asperger’s syndrome all the way over to the other end of the spectrum to those with severe intellectual impairment and all the signs of classic autism.Continue reading…
Finally a proposition to stop the epidemic of ASD (Autism Spectrum Disorder). But is it valid? An expert panel at the American Psychiatric Association is proposing to do just that. The D.S.M., Diagnostic and Statistical Manual of Mental Disorders is undergoing the most dramatic revision in 17 years. The D.S.M. is the standard used to diagnose mental disorders.
By new definitions, most of those now diagnosed with high functioning Aspergers will lose their diagnosis. Experts believe that this will stem the rising tide of numbers of those diagnosed with ASD, numbers which now are reaching “epidemic proportions.”
“We would nip [the rising Autism rate] in the bud,” said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal.
There has been an argument raging for years with one faction claiming that the numbers are merely the results of better diagnoses, while many experts still hold that that still doesn’t account for the fact that one child in a hundred is now diagnosed with ASD.
The paper is from Leonard et al and it’s published in PLoS ONE, so it’s open access if you want to take a peek. The authors used a database system in the state of Western Australia which allowed them to find out what happened to all of the babies born between 1984 and 1999 who were still alive as of 2005. There were 400,000 of them.
The records included information on children diagnosed with either an autism spectrum disorder (ASD), intellectual disability aka mental retardation (ID), or both. They decided to only look at singleton births i.e. not twins or triplets.
In total, 1,179 of the kids had a diagnosis of ASD. That’s 0.3% or about 1 in 350, much lower than more recent estimates, but these more recent studies used very different methods. Just over 60% of these also had ID, which corresponds well to previous estimates.
There were about 4,500 cases of ID without ASD in the sample, a rate of just over 1%; the great majority of these (90%) had mild-to-moderate ID. They excluded an additional 800 kids with ID associated with a “known biomedical condition” like Down’s Syndrome.
So what did they find? Well, a whole bunch, and it’s all interesting. Bullet point time.
Between 1984 to 1999, rates of ID without ASD fell and rates of ASD rose, although there was a curious sudden fall in the rates of ASD without ID just before the end of the study. In 1984, “mild-moderate ID” without autism was by far the most common diagnosis, with 10 times the rate of anything else. By 1999, it was exactly level with ASD+ID, and ASD without ID was close behind. Here’s the graph; note the logarithmic scale:
Are we finally ready to close the door on the much-disputed link between the MMR vaccine and autism?
On January 30, Britain’s General Medical Council ruled that Andrew Wakefield, a gastroenterologist, had acted “dishonestly and irresponsibly” in conducting his research that established a link between autism and the MMR vaccine. And yesterday, the British medical journal Lancet finally retracted the resulting 1998 study authored by Wakefield that helped drive MMR vaccination rates in the U.K. down to the point where in 2008, measles was officially declared “endemic” in the country.
The Lancet’s editor, Richard Horton, told The Guardian “It was utterly clear, without any ambiguity at all, that the statements in the paper were utterly false,” he said. “I feel I was deceived.”
The GMC investigation, entailing 197 days of evidence, submission and deliberation between July 2007 and January 2010, exposed an unscrupulous researcher who falsified data, used sloppy laboratory techniques and subjected children to painful and potentially harmful medical tests like lumbar punctures and multiple colonoscopies to try and prove his notion that MMR vaccinations cause bowel disease and autism. Wakefield even went so far as to offer children attending his son’s birthday party £5 to donate blood samples.
The investigation of Wakefield and his shoddy and unethical research methods began in 2004 when British journalist Brian Deer began talking with parents of the 12 children involved in Wakefield’s study and reviewing medical records. Since then, Deer has dedicated countless hours and words to setting the record straight about Wakefield’s work—including the finding that his research was funded by lawyers representing parents who planned to sue vaccine makers for damages.