Integrating autistic perspectives into autism science: A role for autistic autobiographies.

LAY ABSTRACT: Autism science faces challenges in how to think about autism and what questions to focus on, and sometimes contributes to stigma against autistic people. We examine one way that non-autistic researchers may start to combat these challenges: by reading and reflecting on autistic people's descriptions of their personal experiences (e.g. autobiographies) of what it is like to be autistic. In this article, we review some of the advantages and challenges of this approach and how it may help combat some of the challenges currently facing autism science by focusing studies on the questions autistic people find most important, counteracting stereotypes, and increasing understanding of autistic experiences.

Still Infantilizing Autism? An Update and Extension of Stevenson et al. (2011).

Background: Stevenson et al. (2011) examined photographs and language used to represent autism on chapter websites for the Autism Society of America, autism charity websites, movies, television shows, fictional books, and U.S. new stories and found that they overwhelmingly used children to represent autism. Methods: Using Stevenson et al.'s methods, we tested the hypothesis that, a decade on, these same sources would now include more representations of autistic adults. We statistically compared our findings with theirs. Results: On the chapter websites of the Autism Society of America and in fictional books, the hypothesis was supported in that there were more representations of adults (19%-20%) than in the original study (5%-9%), but there were still far more representations of children than of adults. In movies, television shows, and U.S. news stories, there were equal numbers of representations of autistic adults and autistic children. Conclusions: These findings suggest a move away from infantilizing autism in some domains, but they rely on a narrow construal of "infantilizing": the underrepresentation of autistic adults in media. However, even when autistic adults are represented, they may still be infantilized in various ways. Future research will need to examine the impact of infantilizing media on both autistic and non-autistic people, and other ways in which these representations are limited (e.g., gender and race/ethnicity).

Why is this an important issue?: A prior study showed that most representations of autistic people in the United States portray children. It is important that the public not perceive autism as a disability that only affects children. If autistic adults are not adequately represented, they and their needs become invisible. What was the purpose of this study?: We wanted to see if representations of autistic adults in the United States have increased in the decade since the original study was published. What did the researchers do?: We counted the numbers of representations of autistic adults and autistic children on the chapter websites of the Autism Society of America, autism charity websites, in fictional books, movies, and television shows with autistic characters, and in U.S. news stories that mentioned autistic people. We then compared these numbers with the numbers from the original study. What were the results of the study?: On the chapter websites of the Autism Society of America and in fictional books, there were more representations of adults than in the original study, but there were still far more representations of children than of adults. In movies and television shows, as well as U.S. news stories, the number of representations of autistic adults was equal to those of children. What do these findings add to what was already known?: These findings show that there has been some progress in increased representations of autistic adults in the United States. Our study cannot tell us what exactly has contributed to this change, but we speculate that the rise of autistic self-advocacy is the most likely candidate, as it has trickle-down effects such as hiring of autism consultants for movies and television shows and journalists' increased use of autistic self-advocates as sources. What are potential weaknesses in the study?: Our analyses, as in the original study, are limited to depictions of autism in the United States and examine only one aspect of representation (age). Gender, race/ethnicity, and other dimensions of autistic representations need to be examined in future research. How will these findings help autistic adults now or in the future?: Knowing about representation of autistic adults is important because of the many potential benefits of accurate representation, such as access to accommodations and resources beyond childhood (e.g., jobs, healthcare). Positive media representations may also help reduce stigma and stereotypes.

Experiencing social connection: A qualitative study of mothers of nonspeaking autistic children.

Autistic children do not consistently show conventional signs of social engagement, which some have interpreted to mean that they are not interested in connecting with other people. If someone does not act like they are interested in connecting with you, it may make it difficult to feel connected to them. And yet, some parents report feeling strongly connected to their autistic children. We conducted phenomenological interviews with 13 mothers to understand how they experienced connection with their 5- to 14-year-old nonspeaking autistic children. Mothers of nonspeaking autistic children represent a unique group in which to study connection because their children both may not seem interested in connecting with them and have limited ability to communicate effectively using speech, a common way people connect with each other. The mothers in this study interpreted a range of child behaviors-some unconventional, but many conventional-as signs that their children were interested in connecting with them, (re)framed child behaviors that could undermine connection as caused by factors unrelated to the relationship, and expressed several convictions that may help build and sustain connection in the face of uncertainty about the meaning of their children's behavior. Even though their autistic children may not consistently act in conventional socially oriented ways, these mothers reported perceiving their children's behavior as embedded within an emotionally reciprocal relationship.