TV isn’t making my son look bad enough

I was expecting better when I saw the Vice headline TV is obsessed with an unrealistic portrayal of autistic people. When I complained about The Good Doctor, I thought it was making us look bad.

The Vice article was written by an Autism Mom. Her complaint is that the show is unrealistically positive.

This is not a show I want to watch. I’m tired of what the entertainment business thinks autism looks like—it’s a perception that’s far removed from reality.

The well-known pop culture motif of the “autistic savant” likely started with the release of the film Rain Man in 1988. While savant syndrome is real, it’s actually quite rare—only 10 percent of people with autism are estimated to have savant abilities. But the stereotype has hung around stubbornly since then, appearing in film and television to spread the misconception that autism—despite its varying degrees of impairment—is something that can also bear desirable or even enviable gifts.

That message is damaging in more ways than one. It’s insulting to the large percentage of people on the spectrum without savant abilities, because it implies their stories aren’t as valuable or worth telling. It also promotes the falsehood that an autism diagnosis nearly always comes pre-packaged with extreme giftedness.

“It’s true that many individuals with high-functioning autism have very high levels of intelligence and savant-like abilities,” says Harry Voulgarakis, a psychologist and director of the Shoreline Center for Social Learning in Connecticut. “But it’s important to remember that this is a small percentage of individuals on the spectrum…in fact, about 40 percent of people diagnosed with autism spectrum disorder [ASD] have an intellectual disability, or a lower range IQ. So while the media representations of ASD are not necessarily inaccurate, they are limited in the many aspects of ASD that they are portraying.”

Alright, so an Autism Mom disputes that autism “is something that can also bear desirable or even enviable gifts.” When I was growing up, I was told I’m gifted and not that I’m autistic. It served me better, due to attitudes like this. I’m absolutely able to do things other people can’t because they can’t keep up with an autistic person’s special interest. Perseveration is adaptive persistence, depending on the situation. I’d say that I experience intellectual things that are awesome and I can’t share with very many people.

Autism Mom is the one who can’t see anything good in it, the one who says that message is “damaging.” Right…

The psychologist, who officially helps autistic people, wants to dispel the notion that we aren’t retarded. Anything to make Autism Moms feel validated that their child is truly awful.

She wants more stories about non-savant autistic people:

Why? Why are we afraid to tell stories about autistic people that show the truth? The most recent estimate from the National Institutes of Health shows that about one in every 68 children has ASD. Yet we are still afraid to look autism in the face on screen and accept it for what it really is: a disability that is difficult, challenging, exhausting, and sometimes painful. This kind of convenient erasure does all of us—particularly those in the autism community—a deep disservice.

I think everybody knows it sucks, because most people wouldn’t say they’re jealous and wish they had Asperger’s. People are resistant to understanding why it’s “difficult, challenging, exhausting, and sometimes painful”: normal people.

Notice how unconvincing the second paragraph is, in context:

Living with, working alongside, and caring for someone with autism is messy. They may never read or write or speak. They might be able to talk extensively about Harley-Davidson motorcycles, but not about how they felt when their mother died. They may fly under the radar, judged simply as “strange” or “odd,” and be perpetually misunderstood. They may engage in self-injurious behavior. Their lives may be an endless string of therapy appointments, interventions, evaluations, and insurance battles.

It’s lonely and frightening, both for autistic people and those who welcome them into their hearts—the people who love them in spite of all the messiness. Of course, being part of an autistic person’s life can also be funny, enlightening, inspiring, and transformative. Autism isn’t any one thing: not all bad or good, not all joy or devastation, not all giftedness or impairment. It’s called a spectrum for a reason—it possesses a million different shades of itself.

It’s almost like she’s using social scripting. You’re just supposed to acknowledge those things. It’s one of the steps.

I think it’s ridiculous for Autism Mom to cite inability to speak well about grief for a parent as a sign of autism. When normal people do therapy, how often do they speak freely and openly about their feelings from the beginning? It’s normal for people to be horrible at dealing with their emotions and then become a mess when they drink too much. Being human is not a pathological sign of autism.

Would Autism Mom feel good if her son wrote a thoughtful essay about how hard it is to love her?

Although my son is smart and likes to help people—and could certainly become a doctor one day if he had the desire—he’s not a savant. If he decided to pursue a career in medicine, what would his life actually look like?

He might ace his medical boards, but have to carefully rehearse his bedside manner to avoid seeming brusque or uncaring. He might look forward to the moment when he could lock himself in his office to complete paperwork, craving silence and solitude. He might cite statistics and studies in a sincere attempt to be comforting when a fearful patient asks about the life expectancy of a cancer diagnosis. He might bottle up his frustrations during the day, maintaining a composed veneer of professionalism, and then release his pent-up emotions on his spouse when he returns home.

Perhaps the more important question is this: How would people respond to him if he did behave this way? Remember, he wouldn’t have the saving grace of being supernaturally smart. He wouldn’t be Dr. Shaun Murphy—he would just be himself, part of the ungifted majority of people with autism.

If he wasn’t a savant, how would people treat him? I don’t know the answer. But if someone made a television show about that character, I’d watch it.

Why doesn’t she ask an autistic doctor?

I don’t see what’s so bad about her description of adulthood. That’s just life. But something about it means I need a “saving grace” if I act that way (being overwhelmed in a country famous for unhealthy work-life balance).

I don’t want people who read Vice to see this shit before they see something, anything from an autistic adult. Being autistic is lonely. I want to be able to write an OkCupid profile like a normal person and not have some random lady steal the meaning of all the words I need to use to explain things. She’s preemptively making people think I’m a fucking leper, because she doesn’t know how to love her son properly. It’s some bullshit.

She can’t imagine that autistic people might see things differently and value things differently. From Paul Graham’s Why Nerds are Unpopular:

I know a lot of people who were nerds in school, and they all tell the same story: there is a strong correlation between being smart and being a nerd, and an even stronger inverse correlation between being a nerd and being popular. Being smart seems to make you unpopular.

Why? To someone in school now, that may seem an odd question to ask. The mere fact is so overwhelming that it may seem strange to imagine that it could be any other way. But it could. Being smart doesn’t make you an outcast in elementary school. Nor does it harm you in the real world. Nor, as far as I can tell, is the problem so bad in most other countries. But in a typical American secondary school, being smart is likely to make your life difficult. Why?

The key to this mystery is to rephrase the question slightly. Why don’t smart kids make themselves popular? If they’re so smart, why don’t they figure out how popularity works and beat the system, just as they do for standardized tests?

One argument says that this would be impossible, that the smart kids are unpopular because the other kids envy them for being smart, and nothing they could do could make them popular. I wish. If the other kids in junior high school envied me, they did a great job of concealing it. And in any case, if being smart were really an enviable quality, the girls would have broken ranks. The guys that guys envy, girls like.

In the schools I went to, being smart just didn’t matter much. Kids didn’t admire it or despise it. All other things being equal, they would have preferred to be on the smart side of average rather than the dumb side, but intelligence counted far less than, say, physical appearance, charisma, or athletic ability.

So if intelligence in itself is not a factor in popularity, why are smart kids so consistently unpopular? The answer, I think, is that they don’t really want to be popular.

If someone had told me that at the time, I would have laughed at him. Being unpopular in school makes kids miserable, some of them so miserable that they commit suicide. Telling me that I didn’t want to be popular would have seemed like telling someone dying of thirst in a desert that he didn’t want a glass of water. Of course I wanted to be popular.

But in fact I didn’t, not enough. There was something else I wanted more: to be smart. Not simply to do well in school, though that counted for something, but to design beautiful rockets, or to write well, or to understand how to program computers. In general, to make great things.

At the time I never tried to separate my wants and weigh them against one another. If I had, I would have seen that being smart was more important. If someone had offered me the chance to be the most popular kid in school, but only at the price of being of average intelligence (humor me here), I wouldn’t have taken it.

Much as they suffer from their unpopularity, I don’t think many nerds would. To them the thought of average intelligence is unbearable. But most kids would take that deal. For half of them, it would be a step up. Even for someone in the eightieth percentile (assuming, as everyone seemed to then, that intelligence is a scalar), who wouldn’t drop thirty points in exchange for being loved and admired by everyone?

He continues:

Nerds don’t realize this. They don’t realize that it takes work to be popular. In general, people outside some very demanding field don’t realize the extent to which success depends on constant (though often unconscious) effort. For example, most people seem to consider the ability to draw as some kind of innate quality, like being tall. In fact, most people who “can draw” like drawing, and have spent many hours doing it; that’s why they’re good at it. Likewise, popular isn’t just something you are or you aren’t, but something you make yourself.

The main reason nerds are unpopular is that they have other things to think about. Their attention is drawn to books or the natural world, not fashions and parties. They’re like someone trying to play soccer while balancing a glass of water on his head. Other players who can focus their whole attention on the game beat them effortlessly, and wonder why they seem so incapable.

Even if nerds cared as much as other kids about popularity, being popular would be more work for them. The popular kids learned to be popular, and to want to be popular, the same way the nerds learned to be smart, and to want to be smart: from their parents. While the nerds were being trained to get the right answers, the popular kids were being trained to please.