LAST WEEKEND, SESAME Street announced the introduction of its first character with autism, a little red-haired puppet called Julia.
It underlined the US children’s show’s thoughtful approach to educating children, and on bringing the experiences of different types of people to the screen. Those involved said that there was much discussion about how to do it right.
“The big discussion right at the start was, ‘How do we do this? How do we talk about autism?’” Sesame Street writer Christine Ferraro told US TV show 60 Minutes.
It’s tricky because autism is not one thing, because it is different for every single person who has autism.
Julia’s puppeteer, Stacey Gordon, happens to be the mother of a son with autism, and said: “It’s important for kids without autism to see what autism looks like.”
Here in Ireland, a study from the National Council for Special Education found that 14,000 students have an autism diagnosis. That’s one in every 65 students, or 1.5% of the school population.
Sixty three percent of students with autism attend mainstream schools, while 23% attend special classes in mainstream primary and secondary schools, and 14% attend special schools.
Sesame Street isn’t the first show to depict someone with autism or asperger’s – or who displays traits common to autism or asperger’s. Others include:
- Maurice Moss, in The IT Crowd
- Abed Nadir in Community
- Brick Heck in The Middle
- Max Braverman in Parenthood
- Will Graham in Hannibal
- Saga Noren in The Bridge/Broen
- Dr Sheldon Cooper in the Big Bang Theory
- Sherlock Holmes in Sherlock
- Legion in X Men
Not all of these characters are diagnosed as having autism or Asperger’s Syndrome, and there are varying opinions as to how successful they are in their depiction.
TheJournal.ie spoke to two people with asperger’s who explain that not only is it important that people with autism or asperger’s are represented in popular culture, but that it’s not done in a damaging way.
‘If you meet one person with autism, you meet one person with autism’
Adam Harris (brother of Health Minister Simon Harris) has Asperger’s Syndrome and works in educating people about autism and asperger’s. He welcomes the news about Julia in Sesame Street, but hopes people realise that those with autism or asperger’s are all very unique individuals.
“I particularly welcome the fact this is for young children – the earlier we talk and the earlier we give the information, the better,” he said. But at the same time, Harris noted that children can be very open about the idea of autism and Asperger’s.
“Kids don’t see difference. What happens between when they are small children and we are adults? Our attitude changes so much.”
“Children will be the champions of this inclusion and hopefully they will be able to educate the whole family,” he said.
Harris said that while it is good that Ireland is mainstreaming people with autism into the community, he believes “we don’t mainstream our discussion of autism”.
This has the effect of almost creating a taboo around the issue, he indicated. That’s where his organisation AsIAm comes in. It works to provide information about autism while educating and empowering people- and providing a sense of community too.
Harris said that there’s a saying: “If you’ve met one person with autism you’ve met one person with autism. None of us are the same.”
All the time you meet people who think every person with autism can count cards like Rain Man, that every person at autism is a wizard at maths like Sheldon from the Big Bang Theory. That is not the case and it’s important that people understand that.
And yet, Harris understands why these stereotypes can appear. “It’s a challenge if you try and portray any minority,” he said. “[But] it’s about trying to get the message across while not stereotyping.”
When done wrong, Harris said that a depiction of a person with autism/Asperger’s Syndrome can have negative effects.
“I think it can be extremely damaging. You see positive examples and negative examples. Because everybody’s experience of autism can be different,” he said. “For example, the book the Curious Incident of the Dog in the Nighttime, I think it’s a good depiction, but is that everyone’s experience? No.”
He singled out the Ben Affleck movie The Accountant as being particularly egregious in its depiction of autism.
“I’ve never been more frustrated watching it in the cinema,” said Harris. “I didn’t know what the takeaway message was. It was very damaging, it very much associated autism with violence.”
This viewpoint is also shared by Cork-based Dr Stuart Neilson, who was diagnosed with Asperger’s Syndrome at the age of 48. It was a relief for him to finally get a diagnosis, though it happened late in life (he’s now 53).
“The one I hated was The Accountant,” he said. “I thought it was really, really awful and dangerous.” In particular, he questioned the fact that in the film, Ben Affleck’s character deliberately exposes himself to things which affect him negatively in a sensory way.
He feared there could be “quite well-meaning versions of responses to that film that are harmful”.
Harris describes it as a “real responsibility” for people working in popular culture to be responsible in how they portray people with autism.
“We already have to face so much stereotyping and misunderstanding and misinformation,” he pointed out. “It is important that the popular media doesn’t make it worse.”
Doing it well
Neilson said that while Sesame Street enables children to learn how to respond and play with a child who has autism, what is being missed in the discussion is how a child with autism themselves would feel.
“The one they haven’t talked about is Julia looking at herself on screen and saying ‘that’s me’,” he said. ”It’s really critical being able to see yourself in the films you see.”
He believes films like The Girl with the Dragon Tattoo, Adam, My Name is Khan, and the book Extremely Loud and Incredibly Close did this well.
So too did a book by an Irish author. ”I read a lot of fiction and I don’t see a lot that I see myself in. I think the one that I really loved in the last 10 years is Sara Baume’s Spill Simmer Falter Wither,” he said. The book has a 57-year-old protagonist who is described as “weird” but not given an official diagnosis.
“She said she didn’t want to have a diagnosis because it’s not related to the story, but you can see his traits,” said Neilson. “When I was reading that I thought ‘oh, that’s so much like parts of my life’. My life has turned out very differently because I have a very supportive family. But for him, his family is ashamed of him… I could imagine the outcome of that.”
In the study Representations of autism in the media: perspectives in popular television shows, Katie Dowdy of the University of Arkansas said that previous studies by Safron (1998) and Draaisma (2009) “successfully assert that interpretations of individuals with autism are frequently exaggerated in the media as a way of captivating audiences rather than providing authentic portrayals of the disorder”.
By accepting these stereotypes as the norm, people will expect individuals with autism to manifest some type of “special skill” during their encounters. By not living up to the idealized image, the people with autism become a “diminished capacity” (Draaisma, 2009) in the eyes of the typical developing person.
She noted how important YouTube vlogs (video blogs) have been in showing the variation of personal narratives of autism. These put the story into the hands of the people that it directly affects.
Big Bang Theory
One of the most commonly-known depictions of what appears to be autism is Sheldon Cooper in Big Bang Theory. He’s a super-nerd, played by Jim Parsons, who though a genius lacks social skills and the ability to recognise sarcasm or irony.
The creator of Big Bang Theory has said that Sheldon Cooper wasn’t conceived to be a character with autism, but he’s clearly a person those in the ‘aspie’ community believe does share traits of autism.
Neilson described Cooper as a stereotype, saying: “I think some of what he does is very dangerous as far as stereotype goes”.
Neilson attends a service in Cork called Aspect, for people with autism or asperger’s, and they’ve had many discussions about Sheldon Cooper. One of the aspects they dislike is his wealth.
“In the series where he’s going down and trying to choose a games console, ‘should I buy a games console?’ Our clients can’t do that, our clients would be discussing where they can trade in their last cartridge. He’s not representative. They are also all white apart from [one character], and they are all male unless you consider Amy as an honorary person with autism.”
Neilson has also noticed people misusing the phrase ‘aspie’ like they would OCD. “Now people are saying ‘I had an aspie moment’ and they don’t have asperger’s at all, but they’re saying it because they pick it up from Big Bang Theory and the way people respond to the Big Bang Theory. I think that’s harmful… It trivialises it.”
But he does note the absence of girls and adults in depictions of autism and asperger’s in popular culture. Much of this relates to the first studies of autism, which only focused on boys.
He said he was shocked to hear that some universities still use Rain Man as a means to teach students about autism. In this film, Dustin Hoffman plays a man with autism who has mathematical and observational abilities that aren’t shared by everyone with autism.
Neilson would advise anyone who wants to write about or depict someone who has autism or Asperger’s Syndrome “to spend time with people who have the diagnosis they are writing about, to have an understanding, and maybe to go to the environment they are writing about”.
In his work, Harris said that most people he meets don’t want to discriminate against people with autism. But he said that often people “don’t have the information to understand what it is like to have autism or to know someone who has autism, because so many challenges are misunderstood.”
People were mainstreamed in a “very Irish way”, he said: “We’ll do that but let’s not talk about because it is awkward.”
Harris pointed out that what people might not realise is that people with autism or asperger’s can learn to adapt to their environment once they have support. However, they “will always need certain things”.
Bringing about change “will take time” and means people should be “willing to do things a bit differently”, he said.
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