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Opinion / Viewpoint

Portrayals of autism on television don’t showcase full spectrum

by  /  7 November 2017
The Expert:
Expert

Alison Singer

President, Autism Science Foundation

If you’re a fan of either of two new television shows that debuted in the United States this September “Atypical” on the streaming service Netflix or “The Good Doctor” on ABC I’ve got news for you. You’re watching an overly positive depiction of autism that doesn’t reflect reality for the majority of people on the spectrum.

To the TV-watching public, autism has come to mean the verbal, higher-skilled, savant end of the spectrum, because individuals at that end make for interesting characters.

In “Atypical,” the protagonist Sam’s autism complicates the typical struggles high school students face, from finding a girlfriend to fitting in with the popular teens. But Sam never seems to spend any time in a special-education classroom, much less at a special school.

In “The Good Doctor,” Shaun, the eponymous doctor, struggles with the stress of being a brilliant surgeon; he’s a compelling character but a far cry from most nonverbal, intellectually disabled adults with autism who struggle to find any job at all.

And in “The Big Bang Theory,” a wildly popular comedy that has been on the air for 10 years, one of the leading characters, Sheldon, is a scientific genius with Asperger syndrome-like tendencies. But unlike many adults with autism, Sheldon lives with his friends and is engaged to be married. His habit of knocking three times on his neighbor Penny’s door is seen as cute and endearing; in real life, the stereotypies many adults with autism have are self-injurious and downright dangerous.

These enormous disparities reflect a broader challenge: The word ‘autism’ is applied so broadly as to be practically meaningless. In the previous version of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-IV), ‘autistic disorder’ was defined as a specific cluster of characteristics, including abnormal social interaction and communication, and a restricted repertoire of activity and interests.

The manual included separate diagnoses for Asperger syndrome and pervasive developmental disorder-not otherwise specified — which were typically given to people on the milder end of the spectrum.

But in the current version of the diagnostic manual, the DSM-5, those diagnoses have disappeared. Since 2013, when this version debuted, individuals with a wide range of autism features have all received the diagnosis of ‘autism spectrum disorder.’

Lumped together:

These days, someone with autism can have a genius-level intelligence quotient or have intellectual disability and a score far below average. It can include someone who has no language, minimal language or intact language. It can apply to an individual who has self-injurious, aggressive behavior, or someone who has trouble navigating the social scene in the school cafeteria. It can describe a person who graduated from Harvard Law School or an individual who exited high school with a certificate of attendance.

Thanks to years of research, we know that autism encompasses core features that are present in each person who is diagnosed. Every individual with autism has to have impaired social communication skills and restricted or repetitive behaviors to merit a diagnosis. But beyond that, these individuals’ abilities are vastly different. Saying someone has autism provides almost no information about the type of treatment they need; this is the opposite of personalized medicine.

The autism community must find new terms to apply to subtypes of the condition so that the diagnosis is meaningful and leads to a specific set of appropriate treatments. Developing more specific language around autism will allow clinicians and others to personalize their approach to care and provide benefits to all people on the spectrum.

The DSM-5 was supposed to do this; it was supposed to provide greater specificity so that an autism diagnosis would point toward potential services. But hardly any clinicians apply the criteria in the way they were intended. For instance, clinicians are supposed to use a table to indicate the level of severity. But almost none do. Instead, everyone is lumped together as having diagnosis 299.0: autism spectrum disorder.

Left behind:

The use of this term is a disservice to individuals on both ends of the spectrum, and to those in the middle. It may, unintentionally, be depriving many people of the attention and supports they need, because on TV, autism doesn’t look that bad. On the other end of the spectrum, several self-advocates who have discussed this issue with me recounted how hard it was to access services because they didn’t fit the mold of severe autism and “didn’t look disabled.”

Research has revealed how incredibly heterogeneous autism is; to use a single term to describe it is a contradiction to the knowledge we have gained and a setback for the people we love.

We need to start seeing characters on TV and in movies who reflect the breadth of experiences of people with autism — not just the brilliant surgeon, but the child who bangs his head on the floor so hard and so often that his retina detaches; and not just the high school student who struggles to date, but the one who is so fascinated by the color yellow that he sits home alone watching “SpongeBob SquarePants” all day. Otherwise, people who are highly challenged and struggle every day are at risk of becoming invisible.

Hollywood’s blind spot — or maybe it’s a blind eye — speaks to our society’s aversion to confronting the realities of autism. But in the end, it’s not Hollywood’s fault that autism is presented unrealistically.

The reality of severe autism can be disturbing. What we see on TV and in movies reflects our own reluctance to deal with the enormous burdens severe autism places on individuals and their families. Still, shining the Hollywood spotlight on the Sams, Shauns and Sheldons leaves our most vulnerable individuals in the shadows.

Alison Singer is president of the Autism Science Foundation.


  • KGJ

    You could say that today’s TV characters give an overly positive impression of people diagnosed with ASD if one in 2000 kids was being diagnosed with the condition as in the ’70s or ’80s. But now, 1 in 42 boys is diagnosed with ASD, and very few of the people who were diagnosed with ASD in the last 10 or more years were nonverbal past the age of 4. My son was diagnosed with ASD and went to preschool with a bunch of little boys who were also diagnosed with ASD. Contrary to the impression of physicians and therapists who specialize in ASD and should know better, all those boys were verbal and toilet-trained. My son is now a straight-A student in high school taking all honors classes. He has mediocre reading and writing skills but brilliant spatial and math skills and awards from state-level science competitions. I’m glad popular culture shows ASD in a positive light. The people who need to catch up from their negative point of view are the so-called autism specialists and experts who still think the criteria for ASD diagnosis from 40 years ago apply to the people who are diagnosed as on the spectrum now.

    If you want a more heart-rending depiction of people with ASD, maybe y’all shouldn’t have expanded the criteria to lump in so many people.

    • Peter Lloyd-Thomas

      KGJ, you hit the nail on the head. By ever diluting the “autism” diagnosis in the US DSM, it now has little meaning. The same is true of “autism awareness”, be aware of what? That some kids are quirky, or that some punch themselves in the face?

      The solution is take psychiatrists out of picture and put neurologists in charge. Then strive for an accurate biological diagnosis not some vague observational diagnosis.

  • Greg Love

    We agree that Hollywood’s depiction of autism is inaccurate. To a casual observer, I appear more like Dr. Murphy or Sam or Sheldon Cooper, even as I deplore the stereotype Sheldon Cooper and Sam represent. I am not either of them. I am not merely “quirky,” though Allison and parents like her continually maintain that anyone not like their children is just that: quirky and socially awkward. You do not know nearly as much about my life as you believe you do, so stop pretending to do so.
    Moreover, you want Hollywood to represent autistic children like my son, or like your son, on the “other end” of the spectrum. My son is also non-speaking, and he also is intellectually disabled. You want the viewing public to see the “enormous burden” that autism places on your family and other parents like you. Tell me how this would look any different from the autism hit pieces produced by Autism Speaks during your time there? You want something that Hollywood would never produce: a sitcom on how hard your lives are and how much you wish your children turned out differently. You want the world to see exactly what you showed us years ago when you admitted you thought about driving off a bridge. You want to go back to the days of Kanner’s rare childhood disorder before autistic adults who can speak and type joined the picture, muddling everything up. Stop giving lip service to people like me, saying we do have “problems,” but they pale in comparison to the pitiful tragedy of your lives.
    Until you can prove that those in our community with the highest support needs can be depicted on screen as valid human beings, treated respectfully as disabled autistic people and without the ceaseless burdensome tragedy narrative of non-autistic parents, I do not trust you.

  • Cat

    I would like to point out that the author has made a factual error in her article.
    The author laments the fact that the DSM-IV diagnoses of ‘Autistic Disorder’ and ‘Asperger Syndrome’ have been combined in the DSM-V, so that “individuals with a wide range of autism features have all received the diagnosis of ‘autism spectrum disorder’ “.
    Under the heading “Lumped Together:”, the author states that “these days, someone with autism can have genius-level intelligence”
    The author seems to be under the mistaken impression that the DSM-IV used IQ to distinguish between those with ‘Autistic Disorder’ and ‘Asperger’s Syndrome’. This is not the case. They were distinguished by whether a person had language or other cognitive delays.
    It has therefore always been possible for a person with ‘Autistic Disorder’ to have “genius level intelligence”. I have never heard of Alison Singer, but the fact that she appears to be president of something called the ‘Autism Science Foundation’ is a little worrying.

  • Zwerger

    My understanding is that, although not well understood, the incidence of autism and comorbid intellectual disability is thought to be at least 50%. I can assure Greg Love that I wouldn’t wish my ASD daughter’s significant self-injurious behavior on anyone. That, however, in no way means I see her a burden – I love her deeply and can’t imagine my life without her. I see her as having just as much value as a human being as any other human being – but that doesn’t mean I would wish her suffering on any other human being either. I can tell you that society sees her as a burden – and as someone not worth supporting – services for ASD individuals with high support needs continue to be cut. And, unfortunately, the “squeaky wheel gets the grease” – we parents have to talk about the significance of the high support needs of our children in order to plead for necessary funding. We would love for the support of the entire autism community in this endeavor – but we find ourselves having to fight for our children even with the autism community as valuable human beings often in ways that emphasizes their (and our) struggles. There is a strong human “sympathy” component for the support of non-profit and government funding for our children – talk to any nonprofit fundraising department and they will tell you how much that is true.

  • Miranda

    Well said. Dispensing of the Aspergers category was a foolish decision that has hurt the entire community. We needed more sub typing, not less. Catherine Lord should have known better.

  • Agree that removing Asperger from the DSM was not the greatest move.

    I didn’t think Atypical did a bad job depicting the Aspie end of the spectrum. And although I’m enjoying The Good Doctor, I don’t like the propagation of the idea that all (or even a significant number) of auties have some savant skill. I’ve certainly had that as the first question a couple of times when I’ve mentioned that my kids are autistic.

    There’s a UK show called The A Word that has just started its second season that may be worth checking out.

  • LauraWatchers

    I have ASD, and though I have suffered the hardships of life with ASD and know that it isn’t all sunshine and flowers to have someone like me for a child. I love watching The Good Doctor and would like to remind you that TV shows are not based on actual reality, unless specified, they are just stories with a main character on the spectrum. They are not supposed to make people upset they are to give people with ASD a “good guy” “hero” they can relate to and enjoy watching in the same way that people watch soap operas and other shows. Let us have our “good guys” and “heroes” like everyone else and stop comparing ASD with TV .

  • ProfessorAlbee

    Well-written article. As a forty-four year old high-functioning autistic individual, i am able to personally attest that not all autism cases are created equal. Even though i am pro-‘neurodiversity,’ i have always been a pragmatist who knows full well that not all autistic individuals would be able to embrace this uniquely novel concept. Never have i trusted the American Psychiatric Association’s diagnostic criteria with respect to the various types of autism prior to 2013, especially that of Asperger Syndrome. in my case, i was originally given the diagnosis of ‘early infantile autism’ back in January 1978.

  • PredictionError

    All of those TV shows are unacceptable even as depictions of “high functioning” people like me. Like you’d expect from autism, my life is very lonely. It’s not helping me in ANY WAY that popular TV shows poison people’s understanding of autism, so that they find the very IDEA of me having a romantic life the subject of a comedy. Big Bang Theory spreads the idea that I must be a misogynist. The Good Doctor does clearly racist things like put the obviously-illegal employment discrimination in the mouths of the black guy and the Asian woman. The main character’s hire-me speech is ridiculous. Speaking from the experience of actually going to grad school, you would not, under any circumstances, explain about your Christianity in a job talk. He would have to know that to have even gotten that far. Actual faculty hate sappy stuff about how you had a relative with a health problem. So does everyone. It tells the committee nothing about how you’re going to get publications or help them on a practical level.

    You can’t think of something better to put on TV about “low functioning”people than their worst, most unpleasant moments? Carly Fleischmann’s interview with Channing Tatum is good television that also respects her dignity over the need of autism parents to whine about a possibility all parents should consider before having children. Every child might be born with a health problem, and you have no moral right to complain about life you chose to bring into the world. You lost your bet that the kid would be a prop for your dream of what your future would be like.

    When I’m dealing with normal people stigmatizing me over my race or my autism, the lack of empathy on display dwarfs anything attributable to autism. Normal people are too mean and too loud. Autism is fine.

    • Linda Krueger

      PredictionError, Bravo!!

  • Sasha Azeria

    I think it’s lovely that you speak for better representation of disabled folks between threats to murder your own disabled child 🙂

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