April is World Autism Awareness Month, and it’s clear that in movies, literature and especially television in recent years, there has unquestionably been an increase in characters on the autism spectrum.
Television shows such as Atypical (about a brilliant high-school boy who hopes to go to Antarctica and to start dating, not necessarily in that order); The Good Doctor (about a young man who is an autistic savant and whose genius expresses itself in his brilliance as a physician); The Big Bang Theory (where there is no question that the brilliant and eccentric Sheldon is on the autism spectrum); and the Israeli series On the Spectrum – which is set to be remade around the world – about three Tel Aviv roommates who live with their autism diagnosis but try not to let it define them, have brought autism out of the shadows and into viewers’ living rooms.
These shows are extremely well done and appealing, and there is no question that they have added to viewers’ understanding of autism. All good, right?
WELL, YES and no. There is no problem with any of these portrayals of autism. What is problematic is what is not being shown – people on the lower-functioning end of the autism spectrum, what has been described by professors Helen Tager-Flusberg and Connie Kasari as the “neglected end of the spectrum.”
As the mother of a young man with autism who is categorized as medium-functioning, I am especially sensitive to this issue. (The high-, low- and medium-functioning labels are problematic terms that many find insulting or uncomfortable, and I am not a huge fan of them. It would perhaps be more useful and respectful to categorize people by whether they can live independently or not.)
Like many, my son has lots of skills but cannot live independently, and only the craziest optimist would believe he will ever be able to. But people like my son – especially those who are nonverbal and cannot speak or have very limited speech – aren’t likely to be featured on your cable network or streaming service anytime soon. That’s understandable perhaps – writers like to write dialogue, and you can’t write for people who can’t speak.
Life with low-functioning people on the autism spectrum requires enormous patience, and since a great many of them prefer to stick to well-ordered routines, their lives wouldn’t make great TV. Watching a meltdown is dramatic all right, but it isn’t the kind of drama that most people would enjoy watching.
One show that has given a glimpse into the lives of a family dealing with autism that bears some relation to the reality that many people who are raising children with autism know is The A Word
, a BBC series that is a remake of the Israeli show Yellow Peppers,
a look at a family in a rural area coping with their young son’s diagnosis and (very slow) progress.
But that is one show out of many. I can say that whenever I write about a series about brilliant, quirky and verbal people with autism, I get emails and phone calls from parents of kids like mine, essentially saying, “Why doesn’t anyone tell the stories of our families, of our kids?”
Part of the problem is that autism burst onto the world stage for many with the 1988 Oscar-winning film Rain Man
, in which Dustin Hoffman plays an autistic savant. That was the model of a person on the spectrum back then, and for many it still is, even though only a tiny percentage of people on the spectrum have savant skills. I’ve spent a huge amount of time with people on every part of the spectrum over the years, and I can say that Rain Man
is quite a sensitive and realistic portrayal of a higher-functioning autistic person, one that, like On the Spectrum
, gives a sense of the challenges they face. The 2017 movie Keep the Change
, about a young couple on the autism spectrum in New York, was a beautiful look at their strengths and weaknesses.
As much as I enjoyed Keep the Change
– and I really loved it – as I watched it, I couldn’t help thinking: If only my son could travel around the city alone by bus and join an amateur theater company. My son, in spite of his fluency in two languages and his ability to read and write in both, can’t go anywhere alone, because he is so impulsive he would walk into traffic if he were left unsupervised.
This is a common issue with people on the spectrum who can’t live independently, and while many advocacy groups focus on issues such as increasing acceptance of people with autism – a goal I support, for obvious reasons – we parents of lower-functioning children are obsessed with keeping our children safe and can’t worry much about such abstract causes. A 2017 study done at Columbia University revealed that the average lifespan of people on the spectrum is just 36, and that children and teens with autism are 40 times more likely to die of an injury than the general population.
When I watch these television series about higher-functioning people, or when I see organizations pour time, energy and money into helping only those with autism who are verbal and independent, it causes bottomless frustration. It’s as if you were caught on a mountain in a terrible storm, and you came across a fortified house, but instead of taking you in, the people inside wanted to engage in a debate about hiking in inclement weather through the window, leaving you standing outside.
In terms of public policy, I feel that voters cannot make an informed choice about the issues if they don’t understand what is actually going on with many – if not most (there are no reliable statistics on how many people are on each end of the spectrum) – people who have autism.
In most group homes for people with autism, for example, while the supervisors have degrees and experience, the day-to-day work is done by young people earning minimum wage, who understandably leave the moment a better opportunity comes along. This has a huge impact on the quality of care residents receive.
If people’s only picture of autism comes from television portrayals of those who are high-functioning – if they think of people with autism only as quirky geniuses with a different way of looking at life – they would have no way to understand that the lack of funding for programs for lower-functioning people with autism is a huge public health crisis, both in Israel and around the world.
So I can only hope that in the coming months and years, someone who is a television or movie executive and also has a child on the spectrum will find a way to dramatize the lives of the millions of people around the world like my son.The writer is the author of the novel If I Could Tell You, which was inspired by her experiences as the mother of an autistic son.
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