When researching whether autism is overdiagnosed, Google’s related search suggested, “Why is everyone autistic now?” Is autism on the rise and affecting individuals in record numbers, or is there a problem with diagnostic criteria resulting in an ever widening spectrum where normal behavior is pathologized…
Could I be on the spectrum? Maybe you entertained this thought while those around you speculated about traits of neurodiversity in visionaries like Mark Zuckerberg and Bill Gates. We like to think of ourselves as at least a little exceptional, our hidden genius just misunderstood.
Online quizzes and pop psychology fuel us to read more into our garden variety social awkwardness and intense interests. Quirky behavior, slightly south of the social norm may be enough for a diagnosis on the spectrum—even if it’s on the periphery where mild, or borderline autism is found.
Google schooled society in pseudoscience so, sometimes, we self-diagnose and borrow symptoms from medical conditions. We speak about neurodiversity and our differently wired brains, we use attention deficit hyperactivity disorder (ADHD) as a synonym for creativity, and we identify with gifted Aspies. While this chatter may contribute to destigmatizing some conditions, it could be responsible for diluting the seriousness of a true neurodevelopmental disorder like autism—to the point where an article about surging rates of autism in Silicon Valley was titled The Geek Syndrome (Wired Magazine, 2001).
Media and cultural shifts are not the only elements influencing the possible overdiagnosis of autism. Parents sometimes accept an autism diagnosis even though they know their child is more likely to have sensory processing disorder or some other condition. Autism is a recognized medical condition and a diagnosis means treatment can be obtained, and perhaps more importantly reimbursed. There are many other factors contributing to the perceived or real overdiagnosis of autism, but before getting to those, I want to know if autism is actually being overdiagnosed.
Prevalence of autism rising
In 1943 Leo Kanner introduced the world to the term “infantile autism”—the first systematic description of the condition (Kanner, 1943). The term autism, however, was coined long before this, by German psychiatrist Eugen Bleuler, to describe characteristics of (a subset of) adult schizophrenia.
The 1960s marked a dark period in autism’s history where the condition was mostly blamed on mothers not loving their kids enough. Fortunately science prevailed, and in the late 1970s a revolutionary twin study (Folstein & Rutter, 1977) highlighted the genetic component of autism. Estimates of autism prevalence in the 1960s and 1970s averaged around 1 in 4 000 children (Lotter, 1967).
Compare that to the current CDC figures which tell us that around 1 in 54 children are on the spectrum. Does this sharp rise in prevalence indicate overdiagnosis of autism spectrum disorder (ASD)? Maybe, but other factors influencing diagnosis should also be considered; factors like the context in which children were diagnosed and their surrounding circumstances at the time.
Autism was thought to be the result of an unloving mother or aloof parenting style. The now discredited “refrigerator mom” theory was popularized by influential academics like Bruno Bettelheim and caused much anguish to mothers who were held responsible for their child’s condition.
Stepping back into the 60s, how would a so-called “refrigerator mom” have dealt with diagnosis and treatment? Perhaps seeking a diagnosis was a shameful business best avoided.
Autism may be overdiagnosed when you look at just how sharply the prevalence rate increased in the last few years, but maybe a dramatic contextual shift also means it’s much easier for parents to seek out a diagnosis and treatment.
Neurodiversity is becoming more acceptable—in fact desirable—as different ways of thinking are celebrated. As autism education and advocacy evolve, parents fortunately no longer suffer under vile burdens of shame and blame. But has diagnostic criteria for autism also evolved and become inclusive of “normal” behavior—possibly leading to overdiagnosis?
Diagnostic criteria, the evolution
Many researchers believe the rising prevalence of autism is only a reflection of evolving diagnostic criteria and changes in reporting practices. Others believe the frequency of autism occuring is increasing because of a combination of factors like overdiagnosis, increased awareness, an expanding definition of autism, and more controversial reasoning like associations between autism spectrum disorder and increasing nutritional risk factors (Neggers, 2014).
A Danish study (Hansen et al., 2015) titled Explaining the increase in the prevalence of autism spectrum disorders: the proportion attributable to changes in reporting practices attributed almost two thirds of the increase in autistic Danish children to how autism is diagnosed and tracked.
Does this mean we are not really seeing an “autism epidemic”, but rather more children are being diagnosed and that is why the prevalence rates keep increasing? More global studies are needed before definite conclusions can be reached but the influence of changing diagnostic criteria and reporting practices cannot be denied.
In the above mentioned study (Hansen et al., 2015) around 60%, or almost two thirds, of the increase, in those affected, is attributed to changing diagnostic criteria and reporting practices, but what accounts for the other 40%? Seems like the jury is still out on that matter, but perhaps this is where overdiagnosis plays a minor part.
A broadening spectrum
At first autism was regarded as a type of childhood schizophrenia, from there it was considered a condition resulting from aloof or loveless parenting. As more was discovered about the condition, research directed it to be viewed as a developmental disorder.
Today we know so much more about the condition, and yet much of the knowledge showed just how much we still need to learn. Most experts do agree, however, that autism is a complex neurodevelopmental condition with a spectrum nature. Many feel this broad and slightly vague description of autism may be a factor in overdiagnosis—if a spectrum condition is broad enough eventually anyone could find themselves on it.
This creates much controversy in the autism community. For individuals who face daily battles because of their symptoms, a glib reference to being on the spectrum is offensive. Parents who lose themselves in the constant care of a high needs child feel understandable frustration when Hollywood egos proclaim they may be on the spectrum despite their highly publicized social life.
As a parent it is difficult not to get swept up in media hype. You read about autism prevalence sky rocketing, the media increasingly refers to an “autism epidemic”. The message of early diagnosis and intervention being key becomes part of the parental subconscious. You start paying more attention to your child’s eye contact, any repetitive behavior becomes a red flag, and if their first words are lagging the diagnosis suddenly seems obvious.
DSM-5 Autism Umbrella
To avoid overdiagnosis should autism spectrum disorder have a strict, narrowly defined diagnostic criteria? The Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013) is the latest version of the influential manual used by psychiatrists and other doctors to diagnose mental conditions. The fifth edition consolidated previous separate categories under the umbrella term of autism spectrum disorder.
The decision to do away with these previous categories like aspergers syndrome was not well received by all. The DSM-5’s umbrella term for autism created much controversy among researchers and medical experts. Some felt the new autism category is too broad, while others thought the diagnostic criteria would leave kids who desperately need intervention to fall through the cracks.
When reading all sides of the argument, it seems like precise diagnostic criteria for autism will always be a bit of a gamble. Narrow the criteria too much and those on the threshold, or individuals with atypical presentation, may be deprived of a diagnosis and therapy. Broaden the diagnosis to be more inclusive and suddenly the spectrum caters to all.
The spectrum nature of autism does make diagnosis tricky and plays a part in overdiagnosis. Even doctors admit to struggling with the boundaries of autism, When a disorder or condition occurs on a spectrum the threshold could become murky. Doctors may notice the obvious needs of a child, depriving them of a diagnosis may seem cruel, especially when a child does seem “almost autistic”.
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So what does research say, is autism actually overdiagnosed? Recent studies do seem to point to an overdiagnosis of the condition. Not only is autism being overdiagnosed but research also suggests that the difference between those with autism and those without the condition are shrinking (Rødgaard, 2019).
Does it matter? If an extra 10% of kids are being diagnosed with autism are the implications serious enough to warrant a revision of diagnostic criteria? Mothers struggling to get resources for their children who require significant support answer with a resounding yes.
Autism, the gateway
Others feel it perfectly okay to use autism as a gateway to getting children the services and resources they need. The former head of the US National Institute of Mental Health, Judy Rapaport famously said: “I’ll call a kid a zebra if it will get him the educational services I think he needs.”
The intention behind constructing an umbrella term to cover autism spectrum disorder was probably not to create enough shade to cover every difficult-to-diagnose childhood disorder. But if your child will only get the necessary interventions with a recognized diagnosis like autism, parents are likely to steer the diagnosis in this direction.
Resource allocation is not the only contentious issue linked to overdiagnosis; inflated prevalence rates also lead to false perceptions with far reaching implications. When parents hear autism is affecting more and more children every year, they want a culprit. Some tangible risk to remove from their lives. This atmosphere creates the perfect breeding ground for fear mongering about vaccinations, toxic diets and parenting mistakes.
If we could zone in on a more precise autism definition, or if our understanding of the condition was complete, would overdiagnosis still occur? Some individuals on the spectrum feel the misdiagnosis and overdiagnosis is part of a bigger problem—we still don’t know what autism really is. Austistic individuals should contribute to redefining autism, a definition constructed from the inside will have a significant impact on better diagnoses.
Another area that needs to be addressed with urgency is a separate medical diagnosis for sensory processing disorder (SPD). The fact that many medical professionals refuse to believe in the legitimacy of this condition means parents feel pressured into accepting an autism diagnosis for their children—to receive treatment, services and interventions. It will be difficult to determine, but interesting to note the overdiagnosis of autism because of conditions like SPD.
Not overly concerned
Reading about autism overdiagnosis, it becomes obvious that many medical experts are not too worried about it. They seem to accept that a child who needs help will sometimes receive the correct intervention, under a not quite right diagnosis. Maybe autism is being overdiagnosed, but hopefully the estimated 10% who fall into this overdiagnosis category are getting the right intervention under the wrong label.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
Folstein, S., & Rutter, M. (1977). Infantile autism: a genetic study of 21 twin pairs. Journal of child psychology and psychiatry, and allied disciplines, 18(4), 297–321. https://doi.org/10.1111/j.1469-7610.1977.tb00443.x
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.
Lotter, V. (1967) Epidemiology of autistic conditions in young children. Soc Psychiatry 1, 163–173. https://doi.org/10.1007/BF00578950.
Neggers Y. H. (2014). Increasing prevalence, changes in diagnostic criteria, and nutritional risk factors for autism spectrum disorders. ISRN nutrition, 2014, 514026. https://doi.org/10.1155/2014/514026.
Rødgaard, E. M., Jensen, K., Vergnes, J. N., Soulières, I., & Mottron, L. (2019). Temporal Changes in Effect Sizes of Studies Comparing Individuals With and Without Autism: A Meta-analysis. JAMA psychiatry, 76(11), 1124–1132. https://doi.org/10.1001/jamapsychiatry.2019.1956.