Autism rates were rising when my son was diagnosed with autism 12 years ago in July of 1999. Before too long, we heard talk of an “epidemic of autism” and, over the past decade, we have watched the figures change, to 1 in 166, then to 1 in 100 and 1 in 94 in New Jersey where we live and now, according to a recent study of children in South Korea, to 1 in 38. In an editorial, Frances Allen, chair of the DSM-IV Task Force and professor emeritus of psychiatry at Duke University School of Medicine, says the reason for the increase is that autism has become a “fad diagnosis”:
The most likely cause of the autism epidemic is that autism has become fashionable — a popular fad diagnosis. Once rare and unmistakable, the term is now used loosely to describe people who do not really satisfy the narrow criteria intended for it by DSM IV. Autism now casts a wide net, catching much milder problems that previously went undiagnosed altogether or were given other labels. Autism is no longer seen as an extremely disabling condition, and many creative and normally eccentric people have discovered their inner autistic self.
These are fighting words, especially Allen’s rather condescending statement in the last sentence. His claim of autism as a “fad diagnosis” seems to rest on a narrow definition of what it means to live with an “extremely disabling condition” and of what it means to be “severely autistic.”
According to Allen, the reason for the increase is that the criteria for diagnosing autism have been expanded too broadly, to the point that, if your child has any sorts of delays in their speech and development, parents (eager to get expensive school services) seek a diagnosis. Allen blames over-publicity of autism by advocacy groups, parents and others and a willingness to count cases of autism according to broader criteria.
This dramatic swing from under- to overdiagnosis has been fueled by widespread publicity, Internet support and advocacy groups, and the fact that expensive school services are provided only for those who have received the diagnosis. The Korean study, for example, was financed by an autism advocacy group, which could barely contain its enthusiasm at the high rates that were reported.
The Korean study paid no attention to the bias that haunts all epidemiological studies, which always overestimate pathology rates by including as disorder even very mild presentations that do not have clinical significance. It is entirely plausible that 3% of the population may have some smidgen of autism, but it is entirely implausible that so many would have symptoms severe enough to qualify as an autistic disorder. Reported rates should be regarded as an upper limit, not as a true reflection of the rate of actual mental disorder.
Human nature, neurological illness, and psychiatric disorder all change very slowly, if at all. Environmental toxins do not usually just pop out of nowhere to make a condition 100 times more common than it was less than 20 years before. A more plausible scenario is that DSM IV gave autism purchase by introducing a milder form that is close to the extremely populous boundary of normality. Then autism took flight on the wings of definitional diffusion, internet contagion, financial incentive, and naïve interpretation of epidemiological results.
Allen is directly challenging the theory that better diagnosis and increased understanding at identifying and detecting autism account for much of the rising prevalence rate.
Measuring “increased understanding and knowledge of autism” is indeed not something that one can do and the “better diagnosis” theory is roundly disputed by proponents of theories of environmental agents as causing autism. Allen’s criticism of this theory differs though: He seems rather to mock those wishful thinkers who have, later in life, sought an autism diagnosis. Either you’re severely autistic, or you’re just a label-seeker.
Our son Charlie can be said to fall under the latter category, as his speech and academic and cognitive abilities are very limited, he will require 24/7 care for all of his life and has a history of sometimes extremely challenging behaviors that have made schooling in a separate center for autistic children necessary and preferable. However, Allen overlooks the fact that just being able to have more academic and communication abilities, to have a normal IQ, to go to college and even be married, does not mean that one does not have extreme challenges that can limit one’s opportunities and have effects on one’s health, income and many other areas.
Allen’s limiting an autism diagnosis to only a few who are severe according to his definition is dismissive and overlooks the fact that many do need support and understanding about their differences. He bases his claims on an assumption that, “back in the days” when autism was rare, we — well, doctors, psychiatrists, psychologists — knew precisely what autism was, diagnosed it accurately and did not miss any cases. Has he forgotten that “back in the days” many believed that the cause of autism was parents? That people would hardly seek out a diagnosis for their child that carried such a huge stigma? That an autism diagnosis was the equivalent of having a scarlet A on your forehead, as parents were blamed for causing autism by emotionally withdrawing from a child? That one reason for the increase in autism diagnoses is that we as a society have become more accepting of and open about having a child with a disability?
That, in other words, it might really be better that autism has become so “popular.” At least children and others who need help and support have the chance of getting these rather than suffering due to some unknown, unnamed condition.
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