Abstract
Autistic testimony can be used to both broaden and constrain current theorizing about autism, and to educate lay people of the experiences of (some) autistic individuals. One way to access this testimony involves reading autistic autobiographies (autie-biographies). Dinishak and Akhtar outline several potential benefits of autie-biographies, including questioning assumptions, counteracting stereotypes, and increasing understanding of autistic experiences. As a first step in examining whether autie-biographies can produce these benefits, we coded book reviews of 52 English autie-biographies for three themes (suggestions for research/policy; changed views of autism; increased empathy/understanding) and found evidence for all three. These results suggest that reading autie-biographies may benefit non-autistic readers.
Lay Abstract
One potential way to gain an understanding of autistic perspectives involves reading autistic autobiographies (autie-biographies). If autie-biographies influence readers’ views about autism and autistic people, then book reviews of autie-biographies should indicate changes in the review authors’ views. In this study we examined whether book reviews of autie-biographies: 1) contained suggestions for research and/or policy; 2) suggested changes in the review author's view of autism; and/or 3) mentioned an increased understanding of autistic experiences. We found that most reviews contained one or more of these themes, suggesting that reading autie-biographies might be an effective way to influence non-autistic people’s views about autism.
Attention to the testimony of autistic people can counter harmful and erroneous stereotypes (Jaswal & Akhtar, 2019). Such testimony has been incorporated into programs designed to reduce stigma against autistic people (Jones et al., 2021). One way to benefit from autistic testimony involves reading and reflecting on autistic autobiographies. Dinishak and Akhtar (2022) describe potential benefits of autie-biographies (a term first used by Donna Williams, see Van Goidsenhoven, 2017), specifically for non-autistic autism researchers and claim that taking narrative first-person accounts seriously can both broaden and constrain current theorizing about autism. These books may also have positive effects on non-autistic lay readers; e.g., countering stereotypes and myths about autism (Akhtar & Dinishak, in press). To examine whether autie-biographies might have these effects, we coded book reviews of 52 English autie-biographies for some of the benefits outlined by Dinishak and Akhtar.
The “phenomenological data” contained in autistic testimony can serve as “a control on theorizing” (Dinishak, 2019, p. 19) and can promote epistemic justice (Dinishak, 2021; Fricker, 2007), given their moral and epistemic value. These data can also counter negative assumptions and provide less stigmatized reasons for behavioral characteristics (Jaswal & Akhtar, 2019).
Other potential benefits of autie-biographies include challenging myths and providing “alternative explanations of the behaviors and experiences associated with being autistic” (Dinishak & Akhtar, 2022, p. 579). More specifically, these books can lead to “countering stereotypes, and increasing understanding of autistic experiences” (Dinishak & Akhtar, 2022, p. 578). They may also counter epistemic injustice by centering autistic authors as experts on the experiences of being autistic, creating novel hermeneutical resources for autistic readers (Hillary, 2020) and combating neurotypical ignorance and lack of respect for autistic authors (Catala et al., 2021).
If reading first-person accounts changes non-autistic readers’ conceptions of autism and contributes to a better understanding of the experiences of autistic people, we would expect book review authors (the vast majority of whom are non-autistic) to mention some of these effects in their reviews. Three general themes capture the potential benefits outlined by Dinishak and Akhtar: 1) suggestions for research and/or policy related to autism; 2) changed views about autism; and 3) increased empathy/understanding of autistic experiences. We coded book reviews of 52 English-language autie-biographies for these three themes.
Method
Data collection
On 7/17/22, a WorldCat Advanced search for Keywords: autism and autobiography, Audience: Not juvenile, Content: biography, Format: Book, Language: English yielded 233 results. We excluded edited volumes, books written by non-autistic family members, and those written with co-authors. If there was not enough information in the title or the book description in WorldCat to determine whether the book was sole-authored by an autistic individual, we searched the title on Amazon.com or Google.com for a more detailed description. After independently classifying the 233 results and eliminating duplicates, both authors met to resolve the 3 disagreements, resulting in a total of 72 titles. Fifty-two non-duplicate titles were then added from the first 3 websites that came up in a Google search of “autistic autobiographies” on 7/28/22.
The first author searched all titles using author's last name as an additional search term on EBSCOhost: Academic Search Complete, filtering for book reviews in English, and eliminated 72 books with no reviews in this database. For books with multiple reviews, the first review in each of these three categories was selected: Academic Journal, Magazine, Newspaper. If no academic review resulted for a particular book, that title was also searched on PSYCINFO (filtering for book reviews). To find additional newspaper reviews, each book title and author's last name were searched on Google News (excluding newspaper articles that included interviews with authors). This resulted in a total of 52 titles with at least one review: 8 titles had all three types of reviews, 10 had an academic and a magazine review, 6 had a magazine and a newspaper review, 5 had only an academic review, 19 had only a magazine review, and 4 had only a newspaper review. Thus, a total of 84 reviews were coded.
Coding
There were 3 coding categories: suggestions for research and/or policy; changed views of autism; and empathy/understanding of autistic experiences. See Table 1 for examples of quotes in each of these categories. Each review was coded for the presence (yes or no) of each of the three codes by both authors independently (reliability was 88%); they then met to resolve the disagreements.
Coding categories with examples.
Community stakeholders were not involved in this study.
Results
Approximately 90% of the reviews contained at least one of the three themes. Figure 1 displays the percentage of each review type that contained each of the three themes. As this was a descriptive study, we did not compute any inferential statistics. The academic reviews tended to be longer and were more likely than magazine and newspaper reviews to contain one or more themes. Each theme appeared in slightly more than half of the newspaper reviews and about a third of the magazine reviews. No theme was more frequent than the others in academic journals and newspapers; in magazines, there were more reviews that referenced empathy/understanding than reviews containing the other two themes. We now turn to a discussion of each of the themes.
Percentages of the different types of reviews that contained the three themes.
Suggestions for research/policy
It is perhaps not surprising, given their audience, that many of the reviews found in peer-reviewed academic journals contained suggestions for research and/or policy (e.g., “Not only is this book a good resource for individuals with AS, their families, and educators but it could also be used as a guide … to educate peers regarding the unique differences among their classmates with AS”). Another book is described as providing “actionable advice.” Other research suggestions included focusing on neglected topics in autism research such as “emerging sexuality” and other topics related to adolescent stages of development.
Suggestions were sometimes implicit. For example, in one review, behaviors that are often targeted for “intervention” were highlighted as having value (“stimming… is unfairly condemned in many educational or clinical settings”), suggesting that these behaviors not be targeted (Kapp et al., 2019). Similarly, by quoting “you can count on one hand the number of clinics adept at diagnosing Autism in girls and women… Race and class also contribute to vast disparities in diagnosis,” the review author suggests that researchers and clinicians pay more attention to intersectionality (Botha & Gillespie-Lynch, 2022).
Changed views of autism
Some reviews indicated major changes in the authors’ views (e.g., “Every page dismantles another preconception about autism”). Others described challenges to specific stereotypes (e.g., “Many of us assume individuals on the autism spectrum prefer to be alone. Daniel describes his loneliness and his joy in finding love”). Similarly, “a defining characteristic of autism is held to be a lack of empathy, yet Higashida [the author] shows a delicate regard for the difficulties his condition creates” and “counters the notion that [autistic people] lack empathy with the observation, ‘people with neurotypical brains aren’t so fantastic at getting to grips with our emotions.’” This particular quote is related to the concept of double empathy (see next section), but it also points to some under-appreciated similarities in autistic and non-autistic behaviors/experiences. Some reviews suggest, directly or indirectly, that autistics “have more in common with neurotypical individuals than appearances would suggest.” Sometimes a focus on differences leads to stereotypes that hamper understanding, for example, “the adolescent stages of development in people with Asperger disorder [may not be appreciated] if we focus on their idiosyncrasies.”
Several reviews reframed behaviors often viewed by non-autistic people as negative, for example, “the greatest strength of the book is the way it makes perfect sense of unusual perceptions and behaviors” and “what may seem bizarre and unpredictable follows its own internal logic.” “We learn a new way to view stimming,” “special interests are rendered joyful,” and “picky eating…is reframed as a need for comfort, routine, and familiarity.” Some reviews described books as providing a “positive vision of how an autistic life can develop; benefits of being on the spectrum, without downplaying the challenges,” and “an optimistic view of the possibilities for children who may, early in their lives, appear limited in their potential for development.” Similarly, some challenged the “conception of autism as incapacitating” and focused on strengths such as “autistic honesty,” and “extraordinary eye for detail,” and the fact that “autism forges connections and perspectives that aren’t available to the neurotypical.”
Almost a quarter of the reviews called attention to the heterogeneity of the autistic experience, suggesting that before reading the autobiography the reviewers may have tended to homogenize autistic individuals. One review eloquently describes one book as “creating the portrait of a unique individual, not just a labeled type” while another explicitly contrasts scientific accounts with autobiographical accounts: “in the scientific literature, the person becomes … a type rather than a flesh and blood individual.”
Empathy/understanding of autistic experiences
As the Higashida quote above indicates, non-autistic people are often not good at understanding autistic people's perspectives, the less-often-considered aspect of the phenomenon known as the double empathy problem (Milton, 2012). Several reviews suggest that autie-biographies may reduce this problem by providing insights into “what communication is like for people with autism,” “the perplexities of everyday existence” for autistic people, and “the motivation behind behaviors that may appear aimless.” One review highlighted the “insuperable disconnection between what they want to say or do and what their brain allows them,” while another stated that “different ways of perceiving the world, and of reacting to it, come to seem perfectly natural and comprehensible.”
Interestingly, academic reviews were equally likely to describe increased empathy for autistic experiences (e.g., “Recommended reading for anyone who really wants to know what it feels like to have Asperger syndrome” – emphasis added) as they were to make suggestions for research/policy. Given the brevity of the magazine reviews (most consisted of only one paragraph), it is striking that over half of the review authors chose to highlight increased understanding of autistic experiences (e.g., “opens the world of autism to readers” and “opens us up emotionally and intellectually to perspectives and experiences that too frequently pass us by”). As these quotes suggest, the potential benefits of autie-biographies are both emotional and intellectual; how emotional identification might mitigate the double empathy problem may be a fruitful direction for future research.
Discussion
The review authors’ reflections on their own experiences reading autie-biographies and their assessments of autie-biographies’ value for other readers suggest that autie-biographies can provide practical suggestions, counteract stereotypes, and increase understanding of autistic experiences. Even in the shortest reviews we found evidence for increased empathy. But increased empathy for what? By definition, autobiographical accounts are about the experiences and perspectives of particular individuals. There is no one “autistic experience.” Sub-groups of autistic people are marginalized in various ways (Cascio et al., 2021) and not all of their intersectional experiences are represented in existing autie-biographies. As one review author noted, “There is a sizeable and growing body of first-person accounts of autism; we need all of these voices, each different, each unique.” While we should avoid generalizing from existing autie-biographies, any first-person account that challenges a myth about autism is valuable in that it provides alternatives to existing overgeneralizations (i.e., stereotypes) about autistic people.
Why might narrative accounts be particularly effective at challenging myths and stereotypes? First-person narratives can change minds in ways that non-narrative accounts generally do not because they allow emotional identification with the protagonist (de Graaf et al., 2012). Similarly, first-person accounts may be especially well-suited for “shifting perspectives and challenging preconceived notions” (Dinishak & Akhtar, 2022, p. 584) because they are in the form of stories. Stories are particularly good at encouraging perspective-taking because becoming “absorbed in a narrative can stimulate empathic imagination” (Koopman & Hakemulder, 2015, p. 79). Furthermore, a recent meta-analysis suggests that narratives in general can be effective at combating stigma and first-person narratives even more so (Zhuang & Guidry, 2022).
To be clear, we are not claiming that reading autie-biographies is the only, or even the best, way to influence non-autistic perspectives on autism. The current study suggests it may be one effective way to engage empathy and change attitudes of non-autistic readers. This hypothesis could be tested in survey and interview studies that explicitly ask non-autistic readers if and how reading autie-biographies has changed their views of autism and autistic people. Studies in which non-autistic readers discuss these books with autistic individuals of various intersecting identities might be a powerful way to avoid overgeneralizations and contribute to overcoming the double empathy problem (Chapple et al., 2021).
Because the vast majority of review authors were non-autistic, we have focused on the effects of autie-biographies on non-autistic readers; it will be important for future studies to examine their effects on autistic readers as well, especially given that they are often written with autistic audiences in mind (Hillary, 2020). A recent study suggests that seeing neurodivergent characters represented in narrative fiction can aid identity development in neurodivergent teens (Webber et al., 2024). These teens said that reading about neurodivergent characters’ experiences could support self-understanding and self-acceptance, make them feel less alone, and reduce stigma, especially if the characters were presented in positive (non-stereotypical) ways. Similarly, Hillary (2020) describes autie-biographies as helping autistic readers connect to other autistic people and better understand their own experiences, and as challenging stereotypes and deficit-based views of autism. Autie-biographies that challenge stereotypes about autism and autistic people may also counteract epistemic injustice (Dinishak & Akhtar, 2022).
Prejudicial stereotypes (e.g., a deficit in theory of mind) lead to perceived credibility deficits (testimonial injustice) and undermine how autistic experiences are understood (hermeneutical injustice). Because autistic authors create “the language and concepts needed to describe autistic experiences” (Hillary, 2020, p. 686), they contribute to knowledge about autism and autistic experiences, thereby combating hermeneutical injustice. As noted earlier, autie-biographies center autistic authors as experts on the experiences of being autistic, thereby combating the neurotypical ignorance and lack of respect for autistic authors (Catala et al., 2021) that contribute to testimonial and hermeneutical injustices. And our data suggest that reading autie-biographies may engage empathy and increase understanding, two possible routes to countering some forms of epistemic injustice. Of course, eradicating epistemic injustice will require much more than individual effort (Fricker, 2007), but by countering stereotypes about autism and showcasing the diversity of autistic experiences, autie-biographies ideally can benefit both autistic and non-autistic people (Akhtar & Dinishak, in press).
Footnotes
Acknowledgments
We would like to sincerely thank Asmaa Elshinawy and Adama Bah, without whose valuable assistance this project would not have gotten off the ground. Thanks also to Morton Gernsbacher and an anonymous reviewer for very helpful feedback on earlier drafts. As we finished writing this article, we received the sad news of the passing of Janette's mentor, Ian Hacking. As he has been a major influence on our thinking about autism in general and autistic autobiography in particular, we would like to dedicate this article to his memory.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
