Why Autism Is So Overdiagnosed in America
Autism is, arguably, one of the most misdiagnosed mental health conditions in America today. About 90% of the time I come across a client with this diagnosis, it is incorrect. In the current Diagnostic and Statistical Manual of Mental Disorders (DSM 5), autism is referred to as Autism Spectrum Disorder or ASD. It has three levels of severity, based upon the amount of support the diagnosed person requires to manage in life: level 1 requires the least, and level 3 the most.
Fundamentally, ASD is about persistent, lifelong, clinically significant interpersonal deficits and rigid cognitive behavioral patterns. They make socializing very difficult and gravely impact activities of daily life, like taking a shower or grocery shopping. Many people, including clinicians, look at the formal criteria for ASD and check off a bunch of boxes that superficially ‘feel’ applicable. Unfortunately, they often forget that proper clinical diagnosis needs to consider possible alternative explanations for the symptoms. It should also be based on materially evidenced impairment, not mere subjective complaints.
Three Levels of ASD
Mild
Needs support in social situations.
Manages daily life mostly independently.
Moderate
Needs regular support in social and daily activities.
Difficulty adapting to change.
Severe
Needs support in most areas of life.
Limited communication and independence.
There is a wide range of functional interpersonal behavior among humans. True ASD, even at level 1, is noticeably far from it. Many people with ASD might even resemble an individual with an intellectual disability. And indeed, these conditions frequently overlap.
Almost any introverted or socially awkward person, if not careful, could label himself with ASD. Many people, if so inclined, may ascribe to themselves at least some of formal ASD traits. However, such a subjective review of the DSM criteria is not enough. It must be supported by a broader behavioral pattern, developmental history, and significant degree of impairment. A quick, if unofficial, test of whether a person has ASD would be self-sufficiency. If a person doesn’t require any level of minding in his or her life, then ASD is very unlikely.
Why all the misdiagnoses then? That is where things get both interesting and a little controversial. I want to be clear that I do not know for sure. But I do have ideas and opinions that I’m prepared to share. I think ASD has skyrocketed in diagnosis for a few reasons.
The first is the most obvious: privileges. It might sound strange, but if a person can swing a diagnosis like ASD, he or she might qualify for accommodations that grant an advantage. This is especially evident in academic settings. Extra time on tests, homework, personalized support, and generally more patience with one’s behavior are a few examples.
The second is also obvious: money. I’m not sure how many of you are aware of the term medicalization. It refers to a situation where a nonmedical, commonplace human experience is medically commodified. In other words, it gets labeled as a medical issue so that it can be justifiably “solved” with medical or behavioral health interventions. That, of course, generates a lot of money for people in related fields, including therapists.
The third is a little less obvious, but I think many have started to notice it: identity. We live at a time when some people collect identities as a means of social capital, allowing them to participate in grievance politics and to “opt out” of unfavorable social groups. ASD is a popular and, frankly, easy-to-obtain diagnosis that achieves these ends seamlessly. Should a person find herself without a desirable political community with which to ally, or worse, gets labeled as part of a problematic group, an ASD diagnosis can act as a figurative get-out-of-jail-free card.
The fourth cause is classic avoidance. When people feel they do not fit in somewhere or are awkward, different, or just not as talented as others at a given thing, they might look for an explanation that relieves them of the responsibility to change or accept their circumstances. An ASD diagnosis allows people to relinquish that responsibility and put the blame on forces out of their control.
Fifth, because of the stigma associated with intellectual disability, many people would rather their child or loved one be labeled as autistic, as opposed to intellectually challenged. On top of that, ASD has been associated with hidden talents like eidetic memory due to such films as Rain Man. In reality, most people with ASD have no such capabilities. In any case, I believe that many individuals who are intellectually challenged receive an ASD diagnosis because it makes their family members more comfortable.
Sixth and finally, there is, in my view, a decline in the standards of American behavioral and mental health practice, leading to fast, loose, and lazy diagnoses that favor the most well-known conditions, like ASD. It is also important to remember that the criteria for ASD are easy to research and emulate for a short period. In many cases, no evidence beyond self-reporting is required to support the assertion that a person has had lifelong symptoms. There are also more comprehensive assessments that might include a specialist with hours of questionnaires and testing. But frankly, I’ve seen even these miss the mark by a mile.
Reasons for Increase in ASD Diagnoses
A viewpoint on six contributing factors
Privileges
A diagnosis may bring accommodations, extra time, and added patience.
Money
Ordinary differences may be medicalized, creating demand for services.
Identity
A diagnosis can become a social identity or shield from criticism.
Avoidance
A diagnosis can explain struggles and reduce pressure to change or adapt.
Stigma
Some families may prefer an autism diagnosis over intellectual disability.
Loose Standards
Broader, faster, or lower-quality assessments may increase diagnoses.
A lot of conditions in the DSM are difficult to diagnose on the basis of theoretical knowledge alone. Many clinicians simply do not have experience with actual cases of ASD. It can be a little like surgery. It is one thing to be book-smart in the way of surgical operations, and another to have practical experience and exposure. You need both to be effective. This is every bit as true when it comes to mental health diagnoses.