Abstract
Autism has long been viewed as a disorder characterized by persistent deficits in need of a cure. This medical or pathologizing perspective has been confronted by a social model of disability, which places the burden of the challenges faced by the autistic community on society's failure to accommodate neurological differences. A more nuanced, interactionist model suggests that disability arises from a poor fit between personal characteristics and environmental demands. As part of a mixed-method study on terminology pertaining to autism and related concepts, 14 French-speaking autistic adults from Quebec participated in semistructured interviews. They were asked their definitions of autism, the concept of disability, and whether autism is a disability. Qualitative analyses revealed that respondents were prone to view autism through the lens of a social model of disability. Autism was defined as a neurological difference rather than a mental illness. Although many conceptualized disability as a personal limitation, they were reluctant to label their diagnosis of autism as a disability. The difficulties they face stem from “disabling situations” due to environments and social norms tailored to a neurotypical majority of people. This aligns with the neurodiversity movement, which advocates social change while also recognizing the support needs of autistic individuals.
Lay Abstract
Autism spectrum disorder has long been characterized as a series of deficits. Terms like “person with autism spectrum disorder” emphasize the disorder rather than the individual. This negative perception of autism is beginning to change. This study interviewed fourteen French-speaking autistic adults from Quebec. It explored their views on what autism and disability are, and whether autism constitutes a disability. They expressed that autism is not an illness requiring a cure. Furthermore, it is not a disability. Nevertheless, autistic individuals often find themselves in situations where they feel disabled due to their differences from the norm. Specific adaptations can enhance the inclusion of autistic people. The neurodiversity movement could play a significant role in reducing the discrimination faced by autistic individuals.
Introduction
Autism has long been viewed as a disorder characterized by persistent deficits that require treatment or a cure. For instance, the American Psychiatric Association includes autism spectrum disorder (ASD) in its diagnostic manual, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (APA, 2022), categorizing it among neurodevelopmental disorders. Much of the research on autism centers on etiology, aiming to suppress or prevent the condition (Kapp, 2020). However, advocates from the autistic community have challenged this medical model (MM), asserting it is unnecessarily pathologizing (Bury et al., 2023; Fecteau et al., 2024; Kapp, 2020). Supporters of a social model (SM) of disability argue that society's lack of accommodation leads to the oppression and stigmatization of autistic individuals (Oliver, 2013). The Quebec-based Disability Creation Process (DCP) (Fougeyrollas et al., 2019; International Network on the Disability Creation Process [INDCP], 2010) provides a middle ground between the MM and SM of disability. This model, often employed in rehabilitation, education, and service planning in Quebec, offers a systemic and dynamic perspective on human capacities. It emphasizes a relational approach and an inclusive viewpoint. The DCP perceives disability as arising from the interaction of personal and environmental factors. Individual characteristics (including physical impairments), personal identity, and lifestyle habits (such as social roles and daily activities) are manifested within both a physical and a social environment (family, society), which can create varying degrees of disabling situations. Consequently, disability is not an individual's intrinsic quality but results from a poor fit between personal characteristics, lifestyle, and environmental context, hindering social participation. Less recognized among Anglo-Saxons, the DCP shares similarities with the neurodiversity movement (NDM) (Kapp, 2020), the ecological model (Chapman, 2021), and Dwyer's interactionist model (Dwyer, 2022) of disability. All assert that disability is the product of a poor person–environment fit. They acknowledge the necessity for social change while also emphasizing that individualized support is essential for the well-being of autistic individuals (Dwyer, 2022; Dwyer et al., 2024).
Recent studies on language preference in autism reveal the long-standing dominance of the MM. While person-first language (PFL) was thought to show respect for the individual by “putting the person before the disability” (Vivanti, 2020), some English-speaking advocates view the placement of the diagnosis after “person with” as derogatory, as it aligns with the MM (Botha et al., 2023). Person-first language emphasizes the disability, which can result in stigmatization (Botha et al., 2023; Gernsbacher, 2017; Sinclair, 2013). It also disconnects the condition from the individual's identity (Bury et al., 2023; Fecteau et al., 2024; Geelhand et al., 2023; Kenny et al., 2015; Sinclair, 2013). Instead, placing the adjective “autistic” before “person” would more accurately reflect the understanding of autism as an identity (identity-first language) rather than a disability (Taboas et al., 2023).
In French, the word “person” (personne) precedes the ASD diagnosis, as well as the adjective “autistic” (personne autiste). As a result, the intention behind identity-first language or PFL is less pronounced. However, studies surveying French-speaking populations have revealed that the majority preferred to be identified as autistic people (personnes autistes), rather than as people living with autism (personnes vivant avec) or as people with an ASD (personnes ayant un trouble du spectre de l’autisme) (Fecteau et al., 2024; Geelhand et al., 2023). Participants in both studies among French speakers indicated that autism is not something separate from them or something they can abandon, demonstrating their preference for identity-first language. The term “disorder” (trouble) was noted as particularly offensive and pathologizing, prompting a preference for the term “autism” over “ASD.” Building upon a mixed-method study regarding language preferences and the terminology used to describe autism or autistic individuals (see Fecteau et al., 2024), our research team aimed to explore how autistic adults, family members, and service providers define autism, autistic identity, disability, neurodiversity, autistic pride, and media representations of autism. This current study specifically focuses on autistic adults’ definitions of autism and disability, along with their responses to the question: “Is autism a disability?”
Methods
Recruitment
Our study is part of the larger participatory research project mentioned above, which initially consisted of an online survey on the terminology to favor or avoid when referring to autism respectfully and consensually. In this mixed-methods study, we asked 327 French-speaking respondents about their terminology preferences in autism. The participants were aged between 18 and 85 and older and were autistic (42.8%), parents of an autistic child (17.7%), professionals (22.6%), or fell into the “other” category (friends or family members other than parents; 8.0%). They were mainly recruited through francophone organizations throughout Canada. Participants were asked to complete an online survey that included demographic questions, a rating task to indicate how much they preferred six specific terms to designate autistic persons, and a ranking task assessing participants’ most to least preferred and most to least offensive of these six terms. These tasks were followed by open-ended questions to justify their answers. At the end of the online survey, the respondents could indicate their interest in individual interviews. The interviews were conducted in person, by phone, or by text, depending on the participant's preference. Five researchers conducted the interviews, two of whom identified as autistic. The participants were allowed to choose between an autistic and a nonautistic interviewer. Interviews lasted approximately one hour.
Participants
Fourteen autistic adults were interviewed. Nine self-described as female, four as men, and one as nonbinary. Their ages varied from 18 to 62 (M = 37.36 years). Most (n = 11) had been diagnosed in adulthood (M age = 35), and two were self-diagnosed. Only three participants had been diagnosed in childhood (at 5, 9, and 17 years of age) (Table 1).
Demographic Characteristics of Participants.
ASD: autism spectrum disorder; NB: nonbinary.
Community Involvement and Elaboration of the Semistructured Interview Guide
The overall research project adhered to participatory research principles (Poulin et al., 2023). From identifying the research topic to disseminating results, four researchers and four autistic adults collaborated throughout all stages of the study, including the current investigation.
Interviews commenced while the online study was ongoing. We analyzed the first 100 comments left by survey respondents to clarify their choice of terminology. After a thorough review of the comments from participants in the online survey, we identified topics of interest. Two autistic adults and two researchers elaborated on the semistructured guide. Autistic members subsequently suggested additional themes to explore in the interviews (e.g., autistic pride). The final semidirected interview guide included four sociodemographic questions and 19 open-ended questions regarding terminology preferences, diagnosis, identity, and concepts of autism, disability, neurodiversity, autistic pride, and the representation of autism in the media. The interview guide was sent to participants one week before the interview to allow for adequate preparation.
Analyses
Thirteen interviews were audio recorded; only one was conducted via text message exchange. The recordings were transcribed verbatim. The verbatim recordings were analyzed thematically (Paillé & Mucchielli, 2016) by three of the coauthors (CLN, IC, and GO). One is a graduate student in psychology and a research assistant, one is an autistic adult from the community who received her diagnosis in adulthood and identifies as female, and the third coder is a female academic researcher. Most of the interview participants were female and diagnosed in adulthood. Hence, the experiential knowledge of the autistic coder seemed particularly relevant for data analysis, helping to increase the credibility and validity of the data. She felt comfortable challenging our understanding of certain answers, and her interpretation was given greater weight in our choice of subthemes. The interview content was examined for commonalities and differences among answers to the main research question: “Is autism a disability?” Given the small sample size and the very narrow questions under study, no computer program was used to extract themes and subthemes relevant to participants’ descriptions of autism, the definition of disability, and their views on autism as a disability or otherwise. All three coders read the participants’ discourse multiple times. Analyses were not limited to their answers to the three previously cited questions. Nevertheless, the emerging themes were grouped in the codification grid according to three questions: What is autism? What is your definition of disability? Is autism a disability? The authors convened four times as their individual analyses of all 14 interviews progressed. They first met after analyzing three interviews to exchange their understanding and propositions of themes based on participants’ experiences, meanings, and reality (Braun & Clarke, 2006). After analyzing another three, they reconvened to check whether new themes had emerged and how they could be named. They met after all interviews were analyzed to refine the themes perceived by each of them in the selected interview excerpts, narrowing down the number of subthemes by grouping what seemed appropriate. Finally, they tested whether these broader themes, identified by consensus, accounted for all the data and if saturation had been reached.
Results
The coding grid and emerging subthemes are presented in Table 2.
Themes and Subthemes.
What is Autism?
The definitions of autism provided by the respondents focused on their differences. Moreover, some chose to specify what autism is not. This theme is divided into three subthemes illustrating participants’ views of autism: “Not an illness,” “A difference compared to the social norm,” and “A particular neurological configuration.”
Not an Illness
From the outset, the people interviewed stressed that autism is “not an illness” (Valerie), nor is it something that can be cured.” (Thomas) Participants were adamant in rejecting the MM's pathologizing view of autism. “It's far from being a flaw or something negative that must be corrected, so everything that is an illness, disability or deficit is problematic… I’m different, but I’m not a version that needs to be corrected or perfected.” (Emily) As such, the respondents suggested that autism is not a condition in need of intervention but rather a different “state of being.” (Alice)
A Difference Compared to the Social Norm
The perceived difference relates to “normality.” In response to the medical term ASD (trouble du spectre de l’autisme), one participant explained that it is “not a disorder as such. Often the disorder emerges during contact with social norms [and] the way society functions.” (Zara) In a society where being neurotypical is the norm, “If you’re autistic, you [don’t] function like a neurotypical person.” (Lili) There is “the majority who do things one way, but [there's] that small percentage of [autistic] people who do things differently.” (Fatima) As this respondent explained, it is “another way of functioning than the normal way of most people.” (Julia) Among these differences, emphasis was placed on “a way of evolving in society, of perceiving, of interacting.” (Alice) Akin to the DSM's (APA, 2022) definition of ASD, Paul states that “the [autistics] people communicate differently, and they have more intense interests than people in the general population.” (Paul)
A Particular Neurological Configuration
Beyond the noticeable difference in social behaviors, half of the participants referred to the neurological difference of autism. Autism is explained as a “neurodevelopmental particularity… The brain is configured in such a way that it processes information differently, in a way that is not typical, therefore atypical.” (Zara) Beyond information processing, the wiring of the autistic brain is said to be “a neurological difference that affects several aspects of a person's life.” (Olivia).
What is a Disability?
Two main themes emerged regarding the definition of a disability provided by the respondents. The first refers to a characteristic specific to the person that imposes limits on them. It is perceived as permanent. A second conception of a disability stipulated that the extent of the disability can vary depending on the context.
A Personal Limitation
One participant defined disability as an individual drawback, “a disadvantage compared to a normal person” (Thomas) regarding overall functioning, which reduces the person's autonomy. “In comparison with a person said to be normal… it's something [that] you’re missing … You’re supposed to function like the person next door, but you’ve got something that makes it impossible for you.” (Julia) Along the same lines, a disability is described as a set of restrictions or barriers that prevent the person from performing certain activities or that require assistance. “It's someone who, compared to others, or to the norm… starts off at a disadvantage.” (Michael)
For some, these barriers stem from personal characteristics that cannot be modified. “I think it's a barrier that prevents someone from being able to perform certain tasks.” (Ben) Alice seems to agree: “ The disability is […] our body, our mind, our way of being, of thinking, um, of perceiving things and interacting, […] which imposes restrictions on us, physically, intellectually, emotionally, um, restrictions that are permanent, that will never be cured, that can’t be reversed…[and] that prevent a person's participation, fulfillment, personal fulfillment [and] participation in society.” (Alice)
Conversely, another participant emphasized the dynamic aspect of disability. “There are no limitations that last forever… A disability is not necessarily for life. It evolves according to the person's environment.” (Chloe)
Society Produces Disability
Although many participants viewed disability as “a part of the person” (Olivia), others adhered to the SM of disability. “It's when we have trouble interacting with our environment… it's really the environment between us and around us that's problematic.” (Emily) Moving toward an interactionist perspective, Zara explains that “disability stems from an obstacle that is put in place [and] without any adaptation to get around it, to overcome the obstacle.” Borrowing from the DCP, well-known in rehabilitation services in Quebec (Gouvernement du Québec, 2023), the term “disabling situation” is used. “People who control how the environment is built, have certain needs, so they build this environment for their own needs, not for the needs of certain minorities, and when a person has needs that are not being met by the existing environment, they’re in a disabling situation. I really like the term ‘disabling situation’ because it places the disability on the situation, not on the person.” (Paul) “I like to say ‘person in a disabling situation’ rather than ‘disabled person.’ People often tell me that it's a bit of a pain because it's longer… But it makes the distinction. It's true that a person can be in a disabling situation all their life, but sometimes it can also be temporary.” (Lili)
Is Autism a Disability?
The responses to the question “Is autism a disability?” were nuanced. It seemed impossible to give a definitive yes or no. Alice said it clearly: “Am I a disabled person? I don’t know. Sometimes yes, but more often not.” Autism spectrum disorder cannot be perceived as a disability based solely on a person's diagnosis. Instead, participants appear to be describing a view of disability that is interactionist or ecological. To them, it seems to be the interaction between a neurodivergent brain and a neurotypical environment that brings out the disability.
No, Autism is not a Disability
Some do not consider autism a disability. “For several months, about a year ago, I wondered whether or not I had a disability. Because I’ve always accomplished whatever I wanted.” (Valerie) As long as their diagnosis does not restrict their behavior, autism is not considered a disability. “Because a person learns to live with it, and it doesn’t prevent them from doing what they’re capable of doing…” (Ben) “I never realized that I had a disability. And I don’t think I have a disability, but if I look at it logically, well, I do have a disability because there are things I’m not able to do. I’m able to go out and talk to people and have fun, but doing groceries is hell. So logically, I have a disability, but anyways I haven’t internalized it yet.” (Julia)
“I don’t think I have a disability per se, but I know that at work… there are small daily adaptations [that are put in place].” (Chloe) If a person has certain resources, or if accommodations or adaptations are made to their environment (especially at work), then autism is not a disability. “For crying out loud, when I’m walking my dog in the woods, I’m not disabled at all!” (Zara)
Yes, Autism can be a Disability (Certain Conditions Apply)
Some participants perceive autism as a personal limitation, whereas others consider that society produces the disabling aspect of autism.
Autism is a Personal Limitation
Participants were less hesitant to regard autism as a disability when it was linked to intellectual disability. “I think people often associate an autistic person with someone who is disabled, as they associate autism with intellectual disability.” (Ben) “There are people who are more or less disabled. Autistic people who are more or less disabled… [For] autistic people who have intellectual disabilities, it means giving up some things… [the ones] who have more difficulties than me. They have more of a disability than I do.” (Alice)
“For me, it's a disability because I have a hard time interacting with my environment, so I have trouble working full time, for example. I have to work part-time because I can’t do more. It's hard for me to live independently. I live alone, but I have a hard time with house cleaning, cooking, doing my paperwork… I have to ask for help. It's hard for me to function in society, it's hard to work in an environment. I can’t work in a company, so I’m self-employed. I had run-ins all the time with my coworkers, so for me it was a disability, because I couldn’t do everything I wanted to do.” (Emily)
“Autism can create obstacles or difficulties to doing certain things, like there are difficult things, or it can make it almost impossible for some people to do things in their daily lives. [For example,] going to a public place because it requires energy… We have less energy, so it can be hard to do certain things, like showering and eating, and we need tools. We need more support than the ‘average’ person… So, yeah, I’d say it's a disability.” (Olivia)
“Me, it's more my hypersensitive side that makes me suffer. My auditory hypersensitivity, yeah, hearing, physical contact, touching. That, man-o-man. Just fabrics, jewellery, chains, makeup. Forget it! You can’t wear that!” (Nora)
Autism is Disabling Due to Society
Some autistic people are considered disabled by society and must be recognized as such to access services. “Culturally, we’re seen as people with a disability. We’re put in the same category as the disabled.” (Michael) “For me, disability is more… like a category on a government document that you have to fill out for statistics, logistics… like a count. You have to know how many people have needs in order to create the appropriate structures… I’m someone with an invisible disability.” (Fatima)
Lastly, as perceived by autistic individuals, the interaction with the environment and society produces the disability. Even participants like Alice, who considered disability to be a personal characteristic “in your body,” later revised her opinion by stating, “It is disabling for me; my situation becomes disabling.” Similarly, Lili described disability as a “physical or mental condition.” When asked whether autism was a disability, she replied that “it is not autism in itself that is a disability; it's the social context that is disabling.”
“For me, it's a disorder that we can call social.” (Chloe) “We have a way of functioning that's not necessarily optimal in a neurotypical environment.” (Fatima) Through specific adaptations, their disabling situations begin to fade. “It's not the nature of autism that makes it disabling, it's the societal context… [Therefore, autistic people] are more at risk of being rejected, of experiencing difficult moments or being underestimated.” (Lili) “Do I experience disabling situations? Yes. Many. Moreover, the vast majority of them are social.” (Zara) “I’ve got a disability because I’m not adapted to this society. And society doesn’t change to accept us; we have to wear a mask, we have to fit into society's mould… It's the society that reflects at me the image of a person with a disability, but for me, I don’t have a disability.” (Valerie) “The day when, socially, people have a little better understanding of the social difficulties, and a little better understanding of autistic people's strengths, then the disability will be so much less important. It’ll be less, almost erased. It's a little utopic, I realize. But since the disability is, the way I understand it, largely related to the social situation, if society improves its perspective of it, then automatically the social problem will become less problematic, and autism will be seen less as a disability.” (Michael)
Discussion
Our results demonstrate a rejection of the MM of autism as a condition requiring treatment, as illustrated by the subthemes “Not an illness” and “A difference compared to the social norm.” Autism is not perceived as an illness, nor is it defined as a mental health disorder. Nevertheless, it is recognized as a neurological difference, as shown by the subtheme “A particular neurological configuration,” along with the acknowledgment that it poses limitations and challenges (i.e., “A personal limitation”). Societal norms and expectations may be the reason that autism is experienced as a disability, as revealed in the subtheme “Society produces the disability.” Some consider that autism is not a disability (i.e., “No, autism is not a disability”). In contrast, others believe it sometimes is (i.e., “Yes, autism can be a disability”), depending on the situation and accommodations that are put in place.
Is Autism a Disability?
In response to our primary research question, some participants view autism as a physical condition that imposes limitations on their social participation. Other studies have found that autistic individuals associate many of the challenges they face with their autistic traits (Pecora et al., 2016) or with the disclosure of their diagnosis (Sreckovic et al., 2023).
Nevertheless, the term “disabling situation” was used repeatedly. For several respondents, the conceptual model of disability proposed by the Quebec-based International Network on the DCP (Fougeyrollas et al., 2019), which has been adopted by rehabilitation services in Quebec and the Office des personnes handicapées du Québec (OPHQ, 2009), appears to serve as an implicit or explicit point of reference. Likely inspired by the SM of disability (Oliver, 2013), the DCP indicates that disability is not solely inherent to the individual. Rather, the disabling situation arising from the interaction between a person's characteristics and their environment restricts full social participation and the execution of daily activities and expected roles. This interactionist model of disability adds nuance to the understanding that, under certain conditions and contexts, autistic individuals may not perceive themselves as having a disability. Without directly referencing the neurodiversity movement (NDM) or the ecological model, the autistic adults in our study articulated their views on autism and disability using a similar conceptual framework, consistent with the arguments presented by Dwyer (2022) and Chapman (2021).
However, some participants who initially did not view autism as a disability reconsidered their stance later in the interview, asserting that under certain social conditions, it is in fact a disability. For instance, Julia believes she has a disability because there are specific tasks she finds challenging, and she acknowledges that she has “not internalized it yet.” This statement may relate to the concept of internalized stigma, as she recognizes that the obstacles she encounters in public spaces and during social interactions could indeed be significant enough to classify her autism as a disability. As others have pointed out, society considers autism as a “bad” trait, resulting in infantilization, discrimination, and dehumanization (Botha et al., 2020). This apparent ambivalence from our participant may suggest her view of specific behaviors as flaws, particularly when societal expectations are unmet (Turnock et al., 2022). Even when they have developed a positive identity, some autistic adults manifest a certain amount of internalization of external stigma (Botha & Frost, 2020) which could make them more vulnerable to low self-worth and poorer mental health (Han et al., 2021).
Consequently, for most of our participants, being neurodivergent in a world designed by the neurotypical majority places them in a “disabling situation.” Julia further illustrates this struggle by stating, “You're supposed to function like the person next door, but you've got something that makes it impossible for you.” Both in professional environments and educational institutions, autistic individuals seek accommodations similar to those requested by others who are more readily recognized as having a disability—namely, those whose differences are visible. In the case of autism, the difference in information processing is invisible, making it more challenging to advocate for their rights as individuals in a disabling situation. To improve their well-being and biopsychosocial functioning, numerous studies indicate that autistic people require accommodations and environments that consider their sensory and social specificities (Accardo et al., 2019; Khalifa et al., 2020; Lindsay et al., 2021; Quigley et al., 2024; Sarrett, 2018). They also desire greater awareness and sensitivity toward autism among their peers and society.
In the meantime, many autistic people find themselves in a double bind, having to live with the negative consequences of stigma and discrimination, such as low self-worth and poorer mental health, if they disclose their autistic identity, or the detrimental psychological and physical consequences of concealment or camouflaging to avoid the stigma (Botha & Frost, 2020; Botha et al., 2020; Cook et al., 2021; Han et al., 2021; Lindsay et al., 2021; Perry et al., 2022).
Addressing the Stigma
The concept of neurodivergence as a descriptor for autism could help reduce the stigma associated with this condition. Indeed, the neurodiversity paradigm recognizes that the neurological uniqueness of autism identified by our participants does not represent impairment or disorder but rather a difference within the broad spectrum of normality (Hunt & Procyshyn, 2024; Jaarsma & Welin, 2012; Kapp, 2020). On the one hand, some individuals with a neurodivergent profile may be disadvantaged by society to the extent that they are consistently placed in adaptation mode or even overadaptation. They might camouflage their autistic traits to avoid drawing attention to their neurological differences (Botha et al., 2020; Cook et al., 2021; Perry et al., 2022). On the other hand, accommodations in both the physical and social environment concerning the cognitive characteristics of autistic individuals are not only possible but may be preferable to intervention initiatives that aim to force them to conform to the norm while masking their differences (Camarata, 2022; Dwyer et al., 2024; Hunt & Procyshyn, 2024; Taylor, 2023). Consequently, the movement toward neurodiversity advocates for dismantling the barriers to social inclusion, beginning with a more inclusive language than that often adopted by traditional psychiatry (Bottini et al., 2024; Shaw et al., 2022). Moreover, it celebrates differences and encourages society to concentrate on the unique strengths of neurodivergent individuals to benefit all, with autistic individuals being the primary beneficiaries (Hunt & Procyshyn, 2024).
However, this conception of autism is not unanimous. Critics of the NDM argue that it only applies to certain autistic individuals who do not struggle with oral speech, nor have an intellectual disability, or high support needs. As Jaarsma and Wellin (2012) contend, others may differ so greatly from the norm that they cannot be simply regarded as neurodivergent within the spectrum of normality. Critics assert that their differences are deemed too significant to be considered “natural” and that social accommodations are insufficient to reduce their impairments markedly. This conception requires further investigation from the viewpoint of those concerned.
Limitations of the Study
A convenience sample like the one used in our study presents certain limitations. Interview participants had no associated intellectual disabilities and spoke fluently. Thus, they are far from being a representative sample of autistic individuals across the spectrum as discussed previously. Additionally, we had an overrepresentation of autistic people who identify as women. Furthermore, the inclusion of undiagnosed autistic adults in the small sample size may pose a limitation (Fellowes, 2024; Lewis, 2017). As demonstrated in multiple studies, women tend to be underdiagnosed or diagnosed later in life (Cremone et al., 2023; Milner et al., 2024). In fact, eight out of nine women were diagnosed in adulthood. This limitation, however, contributes to our understanding of the female profile of autism.
Regardless of participants’ gender, the interviews were held very soon after they had received their autism diagnosis. Twelve of the 14 participants had confirmation of the diagnosis six years prior or less. Could the reinterpretation of a long past marked by doubt, challenges encountered or overcome have biased their definition of disability in favor of a more social vision, calling on society to change instead of trying to change autistic behaviors? Studies suggest that autistic people diagnosed in adulthood have a more positive vision of their identity (Fecteau et al., 2024; Fletcher-Watson, 2024; Kiehl et al., 2024; Overton et al., 2023). In all likelihood, as adults, they first tried to understand autism on their own through social media and blogs, which led to a more positive autistic identity than when information about autism comes from the medical or family environment (Bury et al., 2022).
Conclusion
This study enabled us to articulate the definition of autism as perceived and understood by autistic individuals. It also revealed that the specific characteristics of the autistic neurominority in a neurotypical environment present challenges to the extent that they sometimes feel disabled. It is essential to recognize that, from their perspective, disability is situational, meaning it is caused by the interaction of personal factors (including but not limited to the specific traits of autism) with the characteristics of the environment. A society that acknowledges neurodiversity could reduce the stigma associated with the disabling situations experienced by autistic individuals in Quebec and beyond. Ultimately, the genuine social inclusion and fulfillment of autistic individuals and other neurodivergent people would be achievable by adapting to the physical environment but more importantly by altering our perspectives and the social interactions they encounter throughout their lives.
Footnotes
Acknowledgments
The authors express their profound gratitude to all participants who graciously contributed their time, experiences, and insights. Their invaluable contributions have significantly enriched our understanding of the personal experiences and conceptualizations of autism. Furthermore, the authors extend their sincere appreciation to the Université du Québec en Outaouais for their financial support, which was instrumental in the successful execution of this participatory study.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Fonds institutionnel de développement de la recherche et de la création de l’Université du Québec en Outaouais awarded to the GRAADA. Institut Universitaire en déficience intellectuelle et en trouble du spectre de l'autisme, Université du Québec en Outaouais (grant number NA, 3451035).
Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.