With shows like ‘The A Word,’ ‘The Good Doctor’ and ‘Atypical,’ how do people with autism and their families feel about media representations of their lives?
Carlos Lopez remembers how it felt to watch his son, Sammy, stand on the sidelines at a birthday party, terrified to move even an inch, for fear one of the many colorful, floating balloons might make a loud pop. Lopez has learned to problem-solve on the spot, stuffing tissue paper in Sammy’s ears as an added sound barrier beneath the headphones Sammy always wears to block out the excruciating noise of the world. Lopez also knows well, from the early days before he understood autism, the helpless feeling of being unable to calm his young son during a meltdown.
Sammy, who has autism, is now thriving at age 14, a high honors student and a talented visual artist with a group of good friends. Lopez says a team of supportive people helped them reach this point. While there are still many challenges and occasional worries over the future, Lopez now understands aspects of autism that help him connect more deeply with Sammy. One of Lopez’s glimpses into his son’s mind came after watching the awarding-winning film Temple Grandin (2010), based on the title character’s life story. It helped him to understand that Sammy is just wired differently. In the film’s memorable words: “Different, not less.” After watching the movie for the first time, Lopez recalls, he felt “so overwhelmed in a good way because I felt like it helped me see what it might be like inside his head, and maybe what he’s thinking. I felt a lot of gratitude for that, and I just wanted to go hug him.”
Writer and speaker Erin Clemens, 28 and on the autism spectrum, also says Temple Grandin resonates with her. “I really relate to the movie, with the images that pop into her head and the sensory issues that she deals with.”
The connection Lopez and Clemens feel to this movie is one that writers and producers undoubtedly hope to emulate with shows like ABC’s The Good Doctor and Netflix’s Atypical. But is this growing body of TV representations of autism actually making those desired connections?
Yes and no, says autism entertainment consultant Kerry Magro, who is on the autism spectrum himself. “Many parents/guardians I’ve spoken with seem encouraged, while the self-advocate community wants more representation of other characters on the spectrum,” says Magro.
Clemens agrees that the positive and negative reactions are about half and half. She says, “I think some parents get annoyed because they keep showing one end of the spectrum, and not the self-harming, nonverbal and destructive side that they may feel they deal with often.”
That is the sentiment of mother Erin Daugherty, whose 10-year-old son, Zachary, is on the spectrum. Daugherty feels there should be a show that depicts more of the day-to-day challenges some parents face, such as meltdowns or the seemingly simple trip to the grocery store, mall or church. She recalls having to leave playgroups early because her son was playing too aggressively and the feeling she had when noticing other kids were meeting milestones that her son wasn’t. “I think people don’t realize that we notice. I have an older child who’s [neuro]typical, so I know.”
Currently, BBC’s The A Word probably comes the closest to showing a family living life with a young child on the spectrum, but it’s a pretty heavy drama and has received some criticism for being a bit of a downer and missing the magic and beauty and even humor that many experience living with a family member with autism.
Daugherty says her idea of a good show about autism would have lightness and humor mixed with the realism of daily life. She points out that there really are some difficult aspects of having a child on the autism spectrum. She remembers, for example, the first time she realized every boy in her son’s kindergarten class was invited to one boy’s birthday party, except Zachary. “I felt like I was mourning what he should have been doing. But you can’t make people invite your son to a party.”
While Daugherty is a fan of The Good Doctor, she doesn’t think people in real life are as accepting or accommodating as Dr. Murphy’s fellow employees on the fictional show. She wishes people were as accepting in real life but says that hasn’t been her experience. “I think it [The Good Doctor] is more like how we want people to be.”
Perhaps the writers are hoping the portrayal of accommodating attitudes will rub off on the viewers and culture through the power of suggestion.
But one criticism of the integrity of these shows seems to be based on the fact that none of the stars themselves have autism. Magro explains, “Unfortunately today almost all [95%] of disabled TV characters are played by people who are nondisabled…. Theater therapy helped me a great deal when I was in school, and today I know many fantastic actors with disabilities who just want to be given a shot.”
Magro, who was once nonverbal but is now an international speaker and writer, has consulted on the films Joyful Noise and Jane Wants a Boyfriend. He says the teams working on these films reached out to him to make sure they were portraying the characters accurately. Magro says, “This is something we need to see more of from shows today: more involvement from individuals on the autism spectrum, both behind the scenes and on-screen.” He has put inquiries out to consult for both The Good Doctor and Atypical and is waiting for a response.
Magro is quick to point out that it’s difficult to accurately represent the spectrum because of the sheer nature of autism. Magro says, “It’s hard at times to look at the word ‘accurate,’ because autism is a spectrum. If you’ve met one individual with autism, you’ve met just that one individual with autism.”
Yet writers and producers continue to try, with mixed success. Magro says both The Good Doctor and Atypical have received acclaim from the community.
Atypical has definitely presented some controversy, however, mostly over not hiring an autistic actor to play Sam, nor employing any writers or producers with autism.
Another criticism of Atypical is the comedic element, which some say frames Sam in a way that makes the audience laugh at him, not with him. In Teen Vogue actor Mickey Rowe, who is on the spectrum, writes, “To me, Atypical teaches us to laugh at people’s differences — and not in a good way. It is entirely possible that the show’s creators aimed to prove that Sam’s issues were the same as anyone else’s: who hasn’t felt awkward as a teenager or in relationships? But the way the storylines execute their punchlines and morals doesn’t seem to provide a lot of room to create those connections.” In the same article, Netflix showrunner Robia Rashid responds to some of the criticism by saying, “We’re telling a very specific story, Sam’s story, and not trying to speak for every person on the spectrum.”
There is definitely a sector of the community who do not view Atypical negatively, including Lopez. Besides the fact that the main character shares a name with his son, Lopez says watching Sam on Atypical reminds him so much of his Sam. “Despite the controversy, it’s one of the first shows I’ve seen that has gotten the closest to how Sammy talks, not catching social cues, the whole world of what I think he lives in. I think it’s great,” says Lopez. He especially likes the positive spin that shows like Atypical seem to have, in contrast with the real-life media coverage he sees, such as misinformation on the news. Lopez says for a while he felt like every time there was a shooting, newscasters dropped phrases about the shooter possibly being on the autism spectrum, which he feels spreads harmful stereotypes about autism.
As writers, producers and actors strive to “get it right” in creating realistic shows that are inclusive, the idea of an all-encompassing show that offends no one seems almost unobtainable. However, many in the autism community do report feeling encouraged that autism is getting more attention in entertainment. Clemens, who points out that she can really only speak for herself as one individual on the spectrum, states, “I am personally grateful for any awareness.”
Current shows that center on a character with autism feature male protagonists. Magro says, “The challenge moving forward is digging deeper into the autism spectrum by looking at girls who have autism, along with those who are on the severe end of the spectrum.”
Clemens points to evidence that females are beginning to have more representation. She references a female character with autism on Grey’s Anatomy as well as a new movie, Please Stand By, in which actress Dakota Fanning plays a young woman with autism. “So while I don’t think there are currently enough films or TV shows with women on the spectrum, I think it’s slowly getting better,” Clemens says.
The gender gap in autism portrayals is not the only issue that concerns people with autism, though. Clemens says there are certain stereotypes that get to her. “The stereotypes about being on the spectrum that really bother me are that everyone on the spectrum is a savant or takes everything completely literally, as if everyone is Rain Man. I feel that every TV show or film I’ve seen shows that in some way.”
While most people in the community agree that entertainment about autism has come a long way since Rain Man, many agree with Clemens that there is still an undercurrent of assumptions that will take quite a bit of evolution to rewrite on-screen.
Like that of empathy. “For a long time, it was commonly believed that people with autism couldn’t connect the dots emotionally to be empathetic. But what they’ve realized over the past few years is that it’s the opposite. It’s an overabundance of empathy to the point that [some on the autism spectrum] don’t know how to react,” says Lopez, who says his son often overreacts or underreacts depending on the scenario. “It might look like they don’t care but it’s the opposite.” The lack-of-empathy stereotype cuts deep for Magro too, as it’s tied to the false belief that individuals with ASD are incapable of forming meaningful relationships. He shares that this has not been his experience. “Some of the kids [with ASD] I work with are the most empathetic people I’ve ever met.” While the empathetic, relational piece has been touched on in some poignant moments in The Good Doctor and even in some gentler scenes in Atypical, writers and producers will need to up the ante if they really want to present authentic depictions that connect with the community.
Magro writes this well in a recent commentary on HuffPost: “There seems to be an obsession with autism political correctness in some autism-related projects. Producers strive for realism in portraying these autistic characters with the danger of not clearly understanding the individuality of each person on the spectrum. It’s a razor’s edge. Trying to avoid producing ‘inspiration porn’ but also making the programming meaningful to those in the autism community.”
When Lopez asks Sammy what he thinks after watching movies or shows with autistic characters, he usually says something like, “Well, it’s kind of like that, but it’s more like this,” and then proceeds to explain what it’s like for him. For Sammy, it’s sometimes easier to express his emotions and insights through his art. In a recent comic, Sammy was able to articulate some thoughts about moving houses, switching schools and missing a close friend. His dad remembers how worried he was about his son. “For Sammy, structure is what helps his everyday life seem manageable and predictable. I had talked with him in the past about changes and had wondered how much of what I was saying was sticking.” But Sammy surprised him one day by presenting him with a particular section in his comic that read: “Things don’t always go as planned, and some things happen that are beyond our own control, but life can still be good.” Carlos recounts his reaction: “As I’m reading it, my eyes begin to fill with tears. I was overwhelmed with gratitude because I knew that he got it.”
Using art to convey thoughts, feelings and stories is what writers, producers and actors do when they create shows. Shows created to tell stories of people on the spectrum need to incorporate the artistic input of those on the spectrum. If people with autism aren’t included, everyone misses out.