People really don’t like being told that the numbers of autistic diagnoses are rising because it has become “fashionable.” It elicits passionate outcries that autism is a genuine condition, and there is genuine suffering going on. And leads to people – quite rightly – demanding evidence that it has become popular in a way that has led to incorrect diagnoses.
However, pointing out that a growing number of cases of autism aren’t actually autism, is not the same as claiming it isn’t “real”; it’s just the claim that some of the time, autism is a useful label to achieve certain ends seen as more important than an accurate diagnosis. Furthermore, there is evidence and facts that strongly suggest an increase based around such false diagnoses. I will expand on that below. Before I go further I want to acknowledge and explain the depth of emotion you inevitably see in response to professionals who point out this fad-nature of autism diagnoses.
Parents of autistic children get used to having to defend themselves and their children from the ignorance of lay-people, who think there’s nothing wrong with their child that a bit of discipline wouldn’t fix. There are also a large number of vocal people out there who deny autism is a legitimate diagnosis in any situation. So when we see professionals pointing out that there are instances of autism that aren’t really autism (and that is in part responsible for the rise in autism numbers), those well-meaning and passionate parents of genuinely autistic children, react the same way that they would when faced with people who out-right deny autism or attack their child’s diagnosis. It’s no surprise that the common response by parents is “come look after my child then, and tell me there’s nothing wrong with him.” That is an understandable reaction to someone claiming autism doesn’t exist or an individual’s specific child isn’t autistic, but an entirely confused and irrelevant response to the claim that autism is over-diagnosed because it has become fashionable.
That word “fashionable” or “fad” is what often gets the heckles up: How can it be fashionable to have a severely challenged child who has objective problems that stay with them a lifetime, despite every intervention? Problems that can even sometimes be identified by differences at a genetic level? That seems a perverse claim. And it would be a perverse claim, if it was being used to deny the suffering associated with autism, or being taken as a claim that people always enjoy having a child with autism. But fashionable in this context is referring to a number of easily observed trends: Clinicians that purposefully label a child “autistic” when they are not, because they (for example) want the best services for that child, and individuals who proudly self-identity as autistic because the term has become equated with superior intellect and creativity, while also explaining (or excusing) other (less savory) aspects of their personality and life-style.
Indeed, it seems that these sorts of cases are what Allan Frances is referring to in his much-attacked recent article, “The Autism Generation:”:
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.
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.
So where is the evidence of this “fashionable autism;” of (at times purposeful) misdiagnoses and over-diagnoses?
Yes, we all know of people who self-identify as autistic because they think it’s trendy and somewhat amusing to do so, because we all know people who think they’ve got whatever the buzz is lately. They’re the same sort of people who think they have the latest virus because it’s on the news a lot (even though they just have a cold). Not just hypochondriacs; perfectly normal folk who start seeing themselves in a different light just because they keep coming across the same topic and start to self-identify. “I’m sad” becomes “I’m clinically depressed” (even though they never seen a professional about it). “I’m fat” becomes “I have big bones and metabolism problems” because that’s the in-thing to say. This is not the same claim that no one is ever clinically depressed or no one ever has metabolism issues, or that the associated suffering of the genuine complaints is untrue. It’s just that some people are highly responsive to fads, and these sorts of fads appeal to the idea that our problems are not of our own doing, some external or uncontrollable force is victimizing us. It shifts the blame.
I have also met and heard of the parents of children who neglect or even abuse their children (depending on how you want to characterise their parenting), and then label the predictable resulting behaviour as autism or Aspergers. Of course the vast majority of us don’t do this, and have genuinely autistic children who we passionately parent with the sort of dedication that leaves us physically and emotionally exhausted everyday. But some do. There are ass-hats out there who genuinely refuse to parent or discipline their child, and then seek an external or uncontrollable explanation to place the blame on, instead of their own failings. Thinking there is no one who would ever do such a thing, is like believing no one would ever kill or rape or steal; just because something is unthinkable and immoral to you, doesn’t mean it doesn’t happen. Fact is, there are some crap people out there, and some of them are doing the sorts of things that give the rest of us a bad and undeserved name.
But are there professionals who would support and encourage such mis-diagnoses? Yes. The same way there are doctors who diagnose precocious puberty because it matches a theory they have about autism and supposedly justifies an expensive treatment plan. The same way doctors variously lose their licenses because of dodgy and unethical diagnostic (and other) practices. But it’s not just professionals pandering to an eager audience; some of them also actively seek out those clients and generously hand out diagnoses when they haven’t otherwise been requested or suggested by the parents or individuals concerned. Once these practitioners get a name for such liberal diagnoses, word of mouth attracts an ever-growing clientele who are positive their child deserves a diagnosis that has been turned down time after time at other practices.
Indeed, I have written about such a local doctor before. He is the go-to guy for an autism spectrum diagnosis, and I’ve heard from many parents who are positive their child doesn’t have autism despite his diagnosis that they do. Parents who research and attend meetings and read books so they can better understand their child, and find out their child simply doesn’t match the information every other professional body is telling them about autism.
It’s not just dodgy doctors who would do such things (doctors perhaps seeking the money and profile that comes from being known as the go-to guy). Perfectly good and arguably moral doctors, will also very often give a diagnosis for reasons other than accuracy.
Those good doctors are like the ones spoken about in Grinker’s book “Unstrange Minds.” A quote from one such doctor in his book: “I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I’ll call a kid a zebra if it will get him the educational services I think he needs.”
Grinker’s book outlines the growing and impressive supports in place for children with an autism diagnosis (note though, as a side point, that “growing and impressive” does not equate with “adequate”). Often the services that would suit an autistic child’s special needs, will also suit a child with a different diagnosis, but because of particular classifications or funding they are better off going under the head of “autism”: “..if a mentally retarded child without autism is incorrectly given an autism diagnosis, he or she might actually get better treatment than would be possible under the correct diagnosis.” Or the child has minor problems that fall short of the autism spectrum, but would benefit hugely from access to the services available to autistic children (such as extra individualised tuition and behavioural management strategies.)
Grinker also explains the variations in diagnosis from one clinician to the next: “They make the diagnosis that they believe is most helpful for the child, but are not slaves to DSM criteria. This is why you can take your child to four clinicians and conceivably get four different diagnoses.” It is easy to see how, with the increase in awareness and services for autism, that there could be a significant shift towards “autism” when trying to choose the “best” diagnosis for an individual child.
Grinker refers to a study in 1988 about ADHD, which showed notable diversity in the diagnoses given by clinicians for the same group of children, “The clinicians agreed with each other only about 25 percent of the time…“. (Anyone interested in reading further about these variations, and how funding and services can lead to an inaccurate increase in diagnostic numbers, would be well advised to read the book, it really is an eye-opener. All of this feeds into his wider argument that we are not experiencing a real “autism epidemic.”)
So there is evidence for the inconsistency of diagnoses between clinicians, meaning a diagnosis of autism might not always be “objective”, particularly at the edges of the disorder. On top of that, there is actual incentive in some countries and regions to pursue a diagnosis of autism. It’s also easy to understand why some parents and individuals prefer the label “autistic” over comparative terms (“naughty”, “aggressive”, etc), and that various clinicians for various motives will accommodate those people. Add to that the increasing awareness and de-stigmatisation of autism, and it’s really quite easy to see autism in terms of being “fashionable” and that fashionableness impacting noticeably on diagnosis numbers.
How much all these factors play into the actual increase, is unclear and no doubt hard to establish. Made all the more impossible by the number of other factors also feeding an increase: Increased awareness, increased understanding, changes in the way autism is defined and counted, and real increase in incidence. Trying to figure out which of those factors is dominant, or the percentage of relevance of each to the whole in relation to each other, is a challenge (to understate it hugely). At the very least, there is good reason and evidence to not simply dismiss the notion of over-diagnosis and mis-diagnosis.
So when we see someone pointing out that autism is popular or fashionable, it’s a good idea to put aside the (fully understandable) emotional and defensive reactions that we’ve developed as parents of children who are frequently misunderstood. Try to clarify whether the person is denying that autism exists. If they are not denying its existence, and merely pointing out that diagnosis numbers have increased – even for children who are borderline non-autistic or simply not autistic at all – then I think that claim has to be looked at seriously. There does appear to be evidence for shifting diagnoses depending on who’s performing the diagnosis, and evidence that clinicians will choose a diagnosis based on services provided rather than what precisely matches the official manual they’re meant to be working from. The quality and quantity of that evidence is something of interest, no doubt. But the existence of the problem, is not in doubt either.