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In June 2022, a group of researchers from the University of California Santa Cruz published a paper in Autism in Adulthood, updating a 2011 study published in Disability Studies Quarterly that found that autistic people were overwhelmingly represented as children by parents, charitable organizations, the popular media, and the news industry.  

2011 Study 

The 2011 study noted that the lack of representation of autistic adults limited public awareness of those adults’ needs in areas such as employment and housing, for example. As a press release from the University of California Santa Cruz noted, the 2011 paper’s authors theorized that “the bias toward representing children might be due to factors like advocacy organizations being led by parents and clinicians and a predominant focus on initial diagnosis and treatment of autism.” The 2011 researchers were Jennifer L. Stevenson, PhD, then an assistant professor of psychology at Ursinus College in Collegeville, Pa.; Bev Harp, then an autistic writer and speaker and a student in the Master of Social Work program at the University of Kentucky; and Morton Ann Gernsbacher, PhD, then the Vilas Research Professor and the Sir Frederic Bartlett Professor at the University of Wisconsin-Madison.  

2022 Study

The growth of the neurodiversity movement has led to an increased focus from self-advocates on how autistic adults can live successful, productive lives as they age. The Santa Cruz researchers wanted to know if this, among other influences, has made a difference in how autistic people are portrayed, hypothesizing that they would find “more representation of autistic adults.” 

In replicating the 2011 study, the research team looked at the websites of well-known autism advocacy and charity organizations. Twenty percent of the photos on those websites in 2019 depicted autistic adults, compared to 5% in 2011. Eighty percent of the websites mentioned autistic adults and linked to related resources for them.  

The researchers also examined trends in the entertainment industry, analyzing 124 movies and television shows released between 2010 and 2019 that featured autistic characters. In those movies and tv shows, 58% of the characters were children, compared to 68% in the 2011 paper’s original analysis. The researchers wrote that one possible factor in this improvement could be the trend toward hiring consultants to advise on how autism is portrayed, likely because of the efforts of autistic self-advocates.  

In the publishing industry, however, autistic individuals are still overwhelmingly portrayed as children. In the 2022 study, the researchers’ review of 484 English-language fiction books published between 2010 and 2017 that included a mention of an autistic character in the book’s description found that 81% of these characters were children, compared to 91% in the 2011 paper’s analysis. When the 2022 research team looked at books for adults, representation was better, with 67% of autistic characters represented by children.  

For representation in media, the team analyzed 90 news stories from 2020 in print, television, and radio that featured one autistic person. They found that 58% of these stories featured autistic children, compared to 79% of stories in the 2011 study. However, the study writers noted that in many of the stories the autistic adults were portrayed as childlike, with their parents also included in the story.  

The study’s conclusion lists a number of factors that the researchers believe have likely contributed to the increase in representation of autistic adults, including: 

  • Autistic self-advocacy. 
  • Autistic journalists who not only write about autism but presumably influence their colleagues as well. 
  • Non-autistic journalists who interview autistic self-advocates as sources. 
  • Autistic adults serving on boards of autism organizations. 
  • The use of autism consultants for television shows. 

In the article on the University of California Santa Cruz website, Janette Dinishak, a coauthor of the 2022 paper, wrote that there needs to be “a continued increase in the number of representations of autistic adults, along with an improvement in the manner of that representation to reflect the heterogeneity of how autism manifests across a person’s lifespan. Autistic people need to be part of the conversation on how to improve that representation, and they also need to be given space to represent themselves.”

 Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.