Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

Autistic and non-autistic adults’ agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research.

Traditional expert knowledge of autism derives from observations by professionals who often lack the lived experience of being autistic, whose understanding and acceptance of autism might increase by listening to autistic people (Nicolaidis, 2012). Many autistic scholars and self-advocates view autism as a form of diversity rather than pathology, and an increasing number of researchers similarly conceptualize autism in terms of strengths and weaknesses rather than only deficits (e.g., Pellicano and Stears, 2011). Scientifically based knowledge of autism has tended toward greater recognition of interpersonal and developmental capacities over time, such as the reclassification of the conception that the majority of autistic individuals have intellectual disability from accurate (Stone, 1987) to false (Gillespie-Lynch et al., 2015) on the Stone Autism Awareness questionnaire, a change assisted by autistic professionals who specialize in autism, such as researcher Michelle Dawson (Dawson et al., 2007). Nevertheless, the deficit- and behavior-based diagnostic criteria for autism that anchor autism research and treatment continue to locate communication problems within the autistic person (American Psychiatric Association [APA], 2013) rather than examining how interpersonal interactions (De Jaegher, 2013) and societal factors (e.g., Kapp et al., 2013; Kenny et al., 2016) contribute to the challenges experienced by autistic people. The conception of autism as only an impairment within autistic people has been critiqued by autistic (e.g., Milton, 2012; Yergeau, 2013) and non-autistic (e.g., McGuire and Michalko, 2011; Dinishak and Akhtar, 2013) scholars and advocates for misrepresenting mutual challenges between autistic and non-autistic people, and facilitating misconceptions of and stigma toward autistic people.

Increasing interest in the degree to which challenges associated with autism arise from societal misconceptions about and stigma toward autism has contributed to a growing body of research examining misconceptions of and stigma toward autism among people who are not autistic (e.g., Gray, 1993; Mak and Kwok, 2010; Campbell and Barger, 2014; Obeid et al., 2015; Harrison et al., 2017). This research, typically conducted with non-autistic college students, has found that greater knowledge of autism and high-quality personal connections with autism coincide with lower stigma toward autism (Nevill and White, 2011; Gardiner and Iarocci, 2014; Gillespie-Lynch et al., 2015; White et al., 2016). A much smaller but growing body of research has examined how autistic people think about autism, including their evaluations of how it is currently represented and researched (e.g., Kapp et al., 2013; Pellicano et al., 2014a,b; Jones et al., 2015; Kenny et al., 2016; Fletcher-Watson et al., 2017). The current study is the first to compare the degree to which autistic and non-autistic people agree with extant scientific knowledge about autism, how they define autism, and the degree to which they endorse stigmatizing conceptions of autism. Our central hypothesis, that autistic adults would demonstrate greater awareness of scientific knowledge about autism and would describe autism in less stigmatizing ways than non-autistic people, is grounded in growing evidence that autistic people may often have enhanced understanding of fellow autistic individuals (e.g., Komeda, 2015) and resist medical constructions of autism (e.g., Kapp et al., 2013).

Evidence that autistic people often build upon unique insights derived from the lived experience of being autistic to obtain heightened knowledge about autism as a scientific construct would provide further impetus for emerging efforts to involve autistic people meaningfully in autism research and design of interventions. Recent literature reviews of participatory research about autism, wherein autistic people are meaningfully involved in all aspects of research, have revealed very few autism studies utilizing a participatory approach (Jivraj et al., 2014; Wright et al., 2014; but see Nicolaidis et al., 2011 for a strong example of participatory autism research). Indeed, autistic respondents to an online survey reported that interventions for autistic people are not well-aligned with their needs and interests because autistic people are rarely involved in designing such interventions (McLaren, 2014).

Autistic People’s Knowledge of Autism
Failure to consider the perspectives of autistic people is problematic not only based on principles that value active participation by people in matters about their lives, but also because some autistic people use the focused interests that are part of the diagnostic criteria for autism to systematically research autism itself (e.g., Hurlbutt and Chalmers, 2002). Analyses of discussion forum posts revealed that many autistic adults followed closely, and had strong opinions about, the revision of the diagnostic criteria for autism in the DSM-5 (American Psychiatric Association [APA], 2013; Giles, 2014; Linton et al., 2014). Moreover, interviews with three autistic adults revealed that they had researched autism extensively and considered themselves “the experts” on autism (Hurlbutt and Chalmers, 2002, p. 105). Nevertheless, interviews with 11 autistic adults published a decade later revealed that participants felt that their perceptions continued to be overlooked in favor of academic expertise (Griffith et al., 2012). As one autistic participant stated, “everybody is an expert bar the person with a diagnosis. That needs to change” (p. 14).

Autistic People Question Common Assumptions about Autism
Autistic people describe unique insights about autism derived from the lived experience of being autistic (Jones et al., 2013, 2015; Huws and Jones, 2015). They report that non-autistic people often do not understand autistic traits such as repetitive body movements, which autistic people say reflect sensory atypicalities (Davidson, 2010; Donnellan et al., 2012) and self-regulation strategies (Yergeau, 2016). Although autism is defined by socio-communicative difficulties in conjunction with restricted and repetitive interests and behaviors (RRIB), non-autistic laypeople often define autism solely in terms of socio-communicative difficulties and fail to recognize RRIB, including sensory difficulties, as core aspects of autism (e.g., Bakare et al., 2009; Campbell and Barger, 2014). In contrast, autistic people indicate that sensorimotor challenges contribute to their socio-communicative challenges (e.g., McGeer, 2004; Chamak et al., 2008; Robledo et al., 2012).

Interviews with nine autistic college students at a specialized college for autistic people revealed that they felt that only autistic people could truly understand autism (Jones et al., 2013). However, they felt that each autistic person could only speak about their own form of autism rather than about autism more generally. Participants indicated that non-autistic people have stigmatizing misconceptions about autism. They reported that sharing insider perspectives of autism with other autistic people conferred a sense of belonging. An autistic co-author of this study stated that autistic participants’ beliefs that non-autistic people could not understand autism reflected autism-related difficulties adopting other people’s perspectives. He asserted that autistic people develop the self-awareness and communication skills needed to educate others about autism with age. Indeed, additional analyses of the aforementioned interviews revealed that the autistic students felt that they had become increasingly socially aware with development (Huws and Jones, 2015).

While autism researchers often interpret neutral and even positive differences as deficits (Gernsbacher et al., 2006), autistic adults often positively reinterpret the diagnostic criteria for autism (Rosqvist, 2012a). Autistic people commonly report feeling relieved when receiving an autism diagnosis in adulthood (Punshon et al., 2009; Jones et al., 2014) and better understood by other autistic people (Sinclair, 2010; Rosqvist, 2012b; Jones et al., 2013). Similarly, interviews with 10 autistic adolescents revealed that most did not feel that autism was a disability (Jones et al., 2015). Although they recognized challenges associated with autism, such as stigma, they valued the ways that autism made them unique. Nevertheless, many autistic youth describe autism as a source of struggle or a barrier to social inclusion and yearn for normalcy (Humphrey and Lewis, 2008).

Many autistic adults identify societal factors that contribute to challenges associated with autism (e.g., Kapp et al., 2013). They embrace an identity as autistic and reject “neurotypical” behavioral norms by aligning themselves with neurodiversity, i.e., the viewpoint that autism is a natural identity with strengths and weaknesses that contribute valuably to human diversity (Hurlbutt and Chalmers, 2002; Sinclair, 2010; Nicolaidis, 2012; Rosqvist, 2012a; Walker, 2012; Kapp et al., 2013; Pellicano et al., 2014b). The neurodiversity movement challenges the medical model, wherein autism is framed as an impairment within the individual that should be treated and normalized, by emphasizing positive aspects of autism and rejecting the need to normalize autistic people and cure autism.

The neurodiversity movement has been misinterpreted as only representing the voices of “high-functioning” autistic people by researchers (Bagatell, 2010; Jaarsma and Welin, 2012) and the popular media. For example, Lutz (2013), the mother of a “lower-functioning” autistic child, wrote an article in Slate Magazine entitled “Is the Neurodiversity Movement Misrepresenting Autism?” She stated that the neurodiversity movement is “a group of high-functioning individuals opposed to medical research” because they themselves do not need it. However, self-advocates in the neurodiversity movement vary widely in their support needs; they often reject functioning labels as hierarchizing development in relation to an illusory ideal of “normal” that some autistic people are more (i.e., high-functioning) or less (i.e., low-functioning) close to while obscuring contextual variations in abilities, with potentially adverse consequences in terms of autistic individuals obtaining needed supports (Savarese, 2010; Yergeau, 2010; Bascom, 2012; Nicolaidis, 2012; Walker, 2012). Indeed, the neurodiversity movement and the medical model overlap in recognizing that supports are needed to ameliorate challenges associated with autism (Nicolaidis, 2012). For example, an online survey revealed that autistic adults were more likely than non-autistic people to be aware of neurodiversity and to view autism as an essential aspect of identity that needs no cure (Kapp et al., 2013). A subsequent online survey replicated Kapp et al.’s (2013) finding that autistic adults prefer terms for autism, such as “autistic person,” that indicate that autism is a central aspect of identity (Kenny et al., 2016).

Autistic People Recognize Challenges Associated with Autism
Despite viewing autism as central to identity, autistic participants in the study by Kapp et al. (2013) did not differ from non-autistic participants in negative emotions toward autism or in the perceived importance of supports to help autistic people gain adaptive skills. This overlap between the neurodiversity movement and the medical model indicates a more nuanced perspective on disability than the standard social model wherein impairments are believed to arise solely from societal factors. The perspective of autism endorsed by many members of the neurodiversity movement is more consistent with a biopsychosocial model (Engel, 1977) of autism, wherein internal differences interact with social factors to create challenges associated with autism (Kapp, 2013). For example, an autistic researcher pointed out that reduced theory of mind, which has been postulated to be a core deficit within autistic people (Baron-Cohen et al., 1995), is not an impairment that resides within autistic people but rather a mutual difficulty relating, as neurotypical people also face often unacknowledged challenges understanding the minds of autistic people (Milton, 2012). Further evidence that autistic adults’ perceptions of autism align with a biopsychosocial model arises from research demonstrating that some autistic adults recognize that autistic traits interfere with employment and socialization, and attempt to pass as “normal” (Griffith et al., 2012).

Stigma: A Key Challenge Associated with Autism
Behaviors associated with autism may elicit higher levels of stigma than the label “autism” does (Butler and Gillis, 2011). In fact, stigma toward behaviors associated with autism is reduced when people are made aware that the people exhibiting the behaviors have a diagnosis (Brosnan and Mills, 2016), by decreasing perceptions of personal responsibility for atypical actions (Chambres et al., 2008). Indeed, autistic people with fewer symptoms (who appear more “normal”) report higher levels of stigma directed toward them than their more severely affected peers (Shtayermman, 2009), possibly because non-autistic people misinterpret them as intentionally deviant.

Stigma toward autism is reduced not only among those who are made aware that someone has a diagnosis but also among people who have more prior experience with autism. Studies conducted with college students have revealed more knowledge about (Tipton and Blacher, 2014) and less stigma (assessed with a Social Distance Scale) toward autistic people among a small number of participants who indicated that they had nuclear relatives who were autistic and/or who were autistic themselves (Gillespie-Lynch et al., 2015). Other research with college students similarly finds greater willingness to interact with (Nevill and White, 2011) or more positive attitudes toward (White et al., 2016) autistic peers among those with an autistic relative or personal contact, with further findings that the quality rather than quantity of direct contact plays a decisive role in acceptance of an autistic peer (Gardiner and Iarocci, 2014). White et al. (2016) reported that those who knew an autistic person less often identified observable behaviors such as lack of eye contact in connection with autism, which they suggested might indicate that with personal experience people may find that autistic individuals do not all conform to stereotypes. Whether autistic people’s direct lived experience with autism lends enhanced knowledge and reduced stigma through challenging deficit-based (mis)conceptions was not examined in prior work due to small sample sizes.

Does a Focus on Normalizing Autism Contribute to Stigma toward Autism?
Consistent with the lack of consideration of how autistic individuals conceptualize autism, autistic adults continue to feel that their voices are not heard (Milton and Bracher, 2013; Pellicano et al., 2014b). Indeed, researchers express skepticism toward the prospect of yielding significant power to autistic people (Pellicano et al., 2014a). The continued disempowerment of autistic people is evident in the ongoing representation of autism in ways that many autistic people (and some parents of autistic people) disagree with strongly. Nicolaidis (2012), a physician and the mother of an autistic child, stated that recent autism awareness campaigns by researchers and funding agencies that describe autism as a kidnapper of children and as a living nightmare for families contribute to stigma toward autism. These campaigns are extreme examples of the medical model. A secondary aim of the current study was to investigate the hypothesis that medical-model orientations toward autism, such as the desire to normalize and cure autistic people, contribute to stigma toward autism.

Aims and Hypotheses of the Current Study
This study was designed to assess the following hypotheses:

(1) Autistic adults and close family members of autistic people (non-mutually exclusive categories) would express more awareness of up-to-date scientific understanding about autism and less stigma toward autism when compared to people without each relationship to autism.
(2) Autistic adults would more commonly include internal experiences in their definitions of autism, define autism as a neutral difference, and/or critique the medical model than non-autistic people.
(3) Participants who endorsed more of a medical-model orientation toward autism, or expressed stronger interest in finding a cure for autism and in helping autistic people appear more normal, would endorse heightened stigma toward autism.

Findings generally support the notions that autistic people are autism experts through their lived experiences and reduced tendency to view autism through a deficit-defined medical model compared with non-autistic people. Autistic participants exhibited more knowledge about and less stigma toward autism, and more often described autism internally, or in terms of the lived experience of being autistic, than non-autistic people. They exhibited more awareness of recent changes in the diagnostic criteria for autism than non-autistic people. These findings suggest that autistic adults may be highly aware of diagnostic conceptions of autism, while often critical of their behavioral, deficit-only basis (Rosqvist, 2012a; Giles, 2014; Linton et al., 2014). Future research should compare autistic people’s understanding of autism to perspectives on autism expressed by autism researchers in order to evaluate the degree to which autistic people and autism researchers exhibit compatible forms of autism expertise.

Autistic participants’ conceptions of autism often aligned with those of the neurodiversity movement, in that they most frequently described autism as positive or neutral biological differences, and least frequently endorsed the medical model, e.g., by exhibiting the least interest in normalization or in finding a cure for autism. In our sample, less interest in normalizing autistic people and heightened knowledge of autism were associated with one another and with lower stigma toward autism. In addition to neurodiversity-aligned viewpoints, our findings suggest that other factors, such as experiences with autistic people, may reduce stigma toward autism. While autistic people reported far less interest in curing and normalizing autism than others, both autistic people and family members exhibited reduced stigma toward autism. Indeed, reduced interest in normalization and heightened knowledge about autism among autistic participants accounted for their reduced stigma toward autism.

A key implication of these findings is that interventions designed to normalize autistic people and cure-oriented organizations, legislation, and research may contribute to stigma toward autism. However, the current findings are correlational. Future research should examine if exposure to media messages indicating that autism should be cured and/or that autistic behaviors should be normalized leads to heightened stigma toward autism among autistic and non-autistic people.

These findings provide support for the importance of listening to autistic people and becoming more familiar with their experiences in order to address and counter stigma. Indeed, people aware of the neurodiversity movement are more likely to view autism as a positive identity that does not need a cure (Kapp et al., 2013). Although superficially surprising, our finding that numerically more autistic participants supported (55%), rather than opposed (26%), the medical model in their definitions of autism is consistent with prior research demonstrating overlap between the medical model and the neurodiversity movement in terms of shared recognition of challenges associated with autism (Kapp et al., 2013), which is consistent with a biopsychosocial model of autism (Kapp, 2013).

Findings offer clues about how stigmatizing misconceptions about autism might contribute to marginalizing autistic people in society. Autistic participants were more likely to recognize that most children cannot outgrow autism and to reject a misconceived autism-violence link. Media have repeatedly covered research on individuals who “lose” an autism diagnosis, such as a much-publicized newsmagazine article published during recruitment for this study that interviewed families of individuals who were described as having beaten autism (Padawer, 2014). Yet such individuals still have social difficulties (Orinstein et al., 2015). Autistic people often learn to cope by selectively masking autistic traits, but such learned behavior may be effortful and taxing, and does not mean a person is no longer autistic (American Psychiatric Association [APA], 2013). Similarly, empirical evidence has not found autistic people more likely to commit any crime (King and Murphy, 2014), yet media speculations about whether serial killers are autistic (Berryessa, 2014), and sympathy for parents who murder their autistic children (Waltz, 2008; Gross, 2012), may fuel exceptionally stigmatizing misperceptions of dangerousness (Feldman and Crandall, 2007).

Additionally, autistic adults were more likely to agree that autistic people have empathy; as autism by definition involves atypical social communication, autistic people may express their connections to others differently while legitimately feeling and sharing them. Consistent with emerging research (e.g., Smith, 2009), autistic participants frequently reported in their open-ended elaborations an excess of empathy that they struggled to express. Indeed, to successfully navigate “typical” society, autistic people may need to develop an explicit “theory of mind” even more than other people, with many autistic adults expressing considerable insights about their own and other minds (e.g., McGeer, 2004; Williams, 2004; DeNigris et al., unpublished). Non-autistic people’s tendency to view autistic people as lacking insight, aloof, prone to violence, and able to outgrow autism may lead them to doubt an individual’s autism diagnosis when that person is knowledgeable, outgoing, or otherwise effective in self-presentation (Smukler, 2005; Yergeau, 2010; Milton, 2014).

Limitations and Future Directions
Reliance on a convenience sample of people who were willing and able to participate in an hour-long survey for no compensation limits the generalizability of findings. Participants were likely motivated to participate by an intrinsic interest in autism. Indeed, participants in this study exhibited substantially more knowledge of and less stigma toward autism than college students who participated in previous studies for academic credit (Gillespie-Lynch et al., 2015; Obeid et al., 2015).

Findings may not generalize to autistic participants who lack the verbal and computer skills needed to complete the survey. In addition, our analytic category of “nuclear family member of an autistic person” contains a great deal of unexamined variability as we could not distinguish between nuclear family members whose conceptions of autism were formed through relationships with autistic family members who do not speak and/or who have an intellectual disability and nuclear family members whose conceptions of autism were formed through relationships with highly verbal and/or gifted autistic people.

A fairly large number of participants in each group were unemployed, which suggests that our results (and online surveys more generally) might over-represent viewpoints of people who lack other things to do. Given that autistic people are more likely to engage with the neurodiversity movement online (Kapp et al., 2013), findings might represent the views of autism advocacy communities to a greater extent than samples of autistic participants recruited offline. Indeed, like autobiographies (Chamak et al., 2008; Davidson and Smith, 2009) and other online studies (e.g., Kapp et al., 2013; Pellicano et al., 2014b), this sample included a high proportion of autistic women and Caucasian individuals. Although we posted invitations to participate on a wide variety of Internet sites, including self-advocacy, anti-vaccine, and pro-cure groups, the degree to which the viewpoints captured are representative of the broader population remains unknown.

A key limitation of this study, and other Internet-based autism research (e.g., Kapp et al., 2013; Pellicano et al., 2014b; Kenny et al., 2016; Fletcher-Watson et al., 2017), is that we did not verify diagnosis of participants who self-identified as autistic. Some participants who self-identified as autistic might not have met criteria for autism while some participants who self-identified as not autistic may have been motivated to participate because they have heightened autistic traits, but have not been formally diagnosed. Many adults who meet criteria for autism may lack a formal diagnosis, if not also self-awareness, of autism (Brugha et al., 2011). Therefore, the current findings may not be representative of the viewpoints of many autistic people, including those who do not self-identify as autistic. Nevertheless, several factors complicate the ability to diagnose autism in adulthood. Behavioral assessments may lack sensitivity to coping mechanisms developed by adulthood; many autistic adults who no longer register on behavioral tests still demonstrate difficulties typical of autism, and self-report an autism diagnosis (Lai et al., 2011). Furthermore, many autistic adults lack reliable records of diagnostic history (Brugha et al., 2012). Women may be under-diagnosed, in part because autism may manifest differently in females (Kirkovski et al., 2013; Linton et al., 2014), who may tend to develop more superficial compensatory strategies by adulthood (Lai et al., 2011).

To address these limitations in generalizability, future research should be conducted online and offline using probability sampling and should include autistic participants with varied skills for whom diagnosis can be verified. Given the paucity of research comparing conceptions of autism across cultures (Norbury and Sparks, 2013), the inclusion of participants from around the globe was a potential strength of this study. However, more equal numbers of participants from different regions and representing different ethnicities than were obtained in the current study is needed to gain insights into how cultural differences may influence conceptions of autism.

This study demonstrates that autistic people should be considered “autism experts” as they often build upon insights derived from the lived experience of being autistic by researching autism systematically. Autistic people who have developed heightened understanding of autism may be particularly well suited to teach other people about autism, as they tend to endorse less stigmatizing conceptions of autism, have reduced interest in making autistic people appear more normal, and may often have heightened empathy for the challenges others face (Komeda, 2015).

As our participants were adults who were motivated to seek out dialog about autism by participating in an uncompensated online study, we do not suggest that all autistic people exhibit heightened factual knowledge about or reduced stigma toward autism. As many of our survey respondents indicated, each person, regardless of whether or not they are autistic, is unique. Some autistic people seek out factual knowledge about autism while others believe that they can only be experts in their own particular form of autism (e.g., Jones et al., 2013). Autistic people have been reported to gain greater understanding of autism, themselves, and how to effectively educate others with age (Jones et al., 2015). The current findings suggest that autism trainings for autistic youth would benefit from inclusion of knowledgeable autistic adults as program mentors.

Findings also provide preliminary support for Nicolaidis’s (2012) hypothesis that autism awareness campaigns that focus on the importance of normalizing and curing autistic people do indeed contribute to stigma toward autism among both autistic and non-autistic people. Although knowledge is not yet power for many autistic people, identifying how autistic people think about autism is a first step toward developing research that is relevant to their interests and the needs of the community whom the research is intended to serve. Furthermore, the study suggests that involving autistic people as well as other people familiar with and knowledgeable about autism, such as close relatives, as empowered collaborators in the research process may help produce more accurate understanding of autism alongside greater acceptance and reduced stigma.

Read more at original source: http://journal.frontiersin.org/article/10.3389/fpsyg.2017.00438/full


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