New research from UC Santa Cruz shows incremental improvements in the portrayal of adults with autism in films, television, books, media coverage and advocacy organization websites. The study, published in the journal autism in adulthoodfollows a paper 2011“Infantilizing autism”, in Quarterly Disability Studies, who found that popular representations of autism were overwhelmingly child-centric.
The previous paper sounded the alarm about the lack of representation of autistic adults, which can limit public awareness of the unique needs of some autistic adults, such as employment and housing. At the time, the authors of the 2011 article – Jennifer L. Stevenson, Bev Harp and Morton Ann Gernsbacher – speculated that the bias in the representation of children could be due to factors such as organizations advocacy led by parents and clinicians and a predominant focus on initial diagnosis and treatment of autism.
However, since then, the neurodiversity movement has grown steadily, especially as autistic self-advocates have worked to emphasize how people with autism can thrive throughout their lives. life. And a new team of researchers, led by UC Santa Cruz psychology professor Nameera Akhtar, questioned whether those efforts, and other potential influences, may have affected representations of autism over the course of the last decade. So they decided to replicate the 2011 study.
“This is an important question to follow, because adults with autism often say that it is very annoying to them that autism is almost always portrayed as having to do with children, and it is as if it makes them invisible. “, said Akhtar. “They talk about how it’s like falling off a cliff when they’re 18, because there are very few resources available to them after that. But, of course, you don’t stop being autistic and needing accommodations when you become an adult.
To see how trends in representation may have changed, the research team looked at the websites of some well-known autism charities and advocacy organizations. Reviewing online records from 49 state and regional chapters of the Autism Society of America, the team found that 20% of photographs depicting people with autism were adults, compared to just 5% of photos when the study of 2011 originally reviewed these sites. While children were still heavily favored, this was a statistically significant improvement. And 80% of websites at least mentioned adults with autism and linked to related resources. A review of 16 other autism charity websites found similar results.
The study also researched trends in the entertainment industry. Researchers analyzed 124 movies and TV shows released between 2010 and 2019 featuring autistic characters. They found that 58% of these characters were children, compared to 68% of autistic characters were children in the original analysis of the 2011 paper. The new paper indicates that one factor that may contribute to this improvement is that production teams are increasingly using consultants to advise on proposed depictions of autism, likely due to calls for more accurate depiction of autistic self-advocates.
However, the levels of representation were quite different across the publishing industry. The research team looked at 484 English-language fiction books published between 2010 and 2017 that included a mention of an autistic character in the book description. 81% of these characters were children, up from 91% at the time of the 2011 article analysis. This is a statistically significant improvement, despite the continuing disparity. The new paper conducted additional analysis showing that representation was better among books aimed at adult audiences, in which 67% of autistic characters were children.
The research team also analyzed 90 print, television and radio media stories in the United States that featured an autistic person and were published between April and May 2020. 58% of these stories featured children with autism, versus 79% of stories in a similar analysis for the original study.
But the new paper notes that even though adults with autism are increasingly portrayed in the media, they can still be portrayed as children. For example, the study showed that a third of stories that included adults with autism also mentioned their parents. And previous research found that non-autistic researchers, parents, and clinicians are more likely to be portrayed as autism experts than autistic adults themselves.
Overall, the authors of the new study say that while their findings show a move towards a more numerical representation of adults in representations of autism, there is still a long way to go, including in the ability of these representations to truly reflect the lived experiences of adults with autism. Janette Dinishak, associate professor of philosophy at UCSC, co-author of the new paper, says she hopes future improvements in representation could include increased attention to the intersectionality of autism with gender, race , ethnicity and other social categories or identities.
“We need to see a continued increase in the number of representations of autistic adults, as well as an improvement in the manner of that representation to reflect the heterogeneity of how autism manifests across a person’s lifetime. nobody,” she said. “People with autism need to be part of the conversation about how to improve that representation, and they also need to have space to represent themselves.”