Abstract

As the diagnosis of autism spectrum disorder (ASD) becomes more prevalent in society and an autistic culture develops and moves forward, colleges and universities are in the position of supporting students with similar differences but opposing views about how to address those differences. The autism acceptance movement emphasizes the need for change by educational institutions and society at large, while the medical model perspective seeks to understand cause and believes autistic people need treatment and even need to be cured of autism. This article uses a disability identity development model to explore the potential impact of autism acceptance and medical model perspectives at different stages of development. Postsecondary program elements that emphasize neurodiversity, understanding strengths, and the building of academic strategies for success that support students who are in the process of identity development are recommended.


Identity, one's definition of the self, is a cornerstone of wellness and well-studied feature of adolescence and emerging adulthood (Arnett, 2004). Groups that are marginalized in society share distinctive features of identity development as they define themselves amidst a broader culture marked by racism, heterosexism, ableism, and other forms of oppression (Mio, Barker & Tumambing, 2012). Similar to racial, ethnic, and sexuality minority groups, autistic individuals 1 develop identity within a culture that may not understand or accept their distinct ways of being. How can autistics forge positive identities in a cultural context of ableism? This question has not been addressed directly by research, but insights from contemporary autism movements offer possibilities. The autism acceptance movement, the medical model, and Jennifer Gibson's disability identity theory are discussed in relation to autism identity development in the college years, and concrete suggestions are made for postsecondary institutions.

Diagnoses of autism spectrum disorder (ASD) have more than doubled in the United States since the year 2000, increasing from 1 in 150 to 1 in 68 (CDC, 2014). As diagnoses increase, more adolescents and emerging adults may be forming identities amidst two movements that disagree on the best way to understand autism. The autism acceptance movement, which stems from a disability studies perspective, maintains that autism is a normal human variation that should be accommodated by an informed mainstream. Efforts associated with autism acceptance include the neurodiversity movement, autistic self-advocacy, and autism rights. The medical model perspective, from which a great deal of scientific and educational research has emerged, views autism as a pathology in need of a cure (Lim, 2015). The postsecondary years are a key time for identity development. A question faced by college students on the spectrum is, "how much should I mold myself to social conventions versus find a cultural niche that accepts me as I am?" Similarly, colleges must ask, "what aspects of ASD-linked behavior should be accepted and what is best rejected?"

The questions above are echoed in the words of autistic adults. In an ethnographic study of adults with Asperger's, participants described the dilemmas of interacting with the neurotypical world. Themes include fitting into neurotypical social conventions versus being oneself, and meaningless versus meaningful training, referring to the line between "training away your personality" versus useful training (Rosqvist, 2012). The tension that Rosqvist's participants described between being yourself and "fitting in" mirror the divergent emphases of the autism acceptance movement and the medical perspective.

The opposition of disability studies and the medical model is not new, but the debate is particularly active in discussions of autism as diagnosis and popular and academic coverage have increased. Books that astutely examine the history and alternative view of autism as contributing society's diversity have recently gained attention in academic circles as well as with the general public (Donovan & Zuker, 2016; McGuire, 2016; Silberman, 2015). The field of disability studies emerged in the 1980's to reframe disability as a social, political, and cultural phenomenon rather than a medical one (Linton, 1998). Since its inception, the field has grown with numerous graduate and undergraduate programs at colleges and universities across the United States (Syracuse University, 2015). Following a civil rights framework, disability studies inquiry has demonstrated the malleability and situation-specific notion of disability as well as its connections to privilege, oppression, and social power (Nielsen, 2012).

A prevalence study estimated that .7 to 1.9 percent of enrolled college and university students met the diagnostic criteria for ASD, although many were unlabeled (White, Ollendick & Bray, 2011). While earning a postsecondary degree is a life goal of goal of most students who have a disability, many do not achieve this goal (Sanford, et al., 2011). After high school, 57 percent of disabled students focused on postsecondary education and 14 percent on employment, while 29 percent were found to be "continuously or increasingly disengaged," (Wei, Wagner, Hudson, & Shattuck, 2015). Of 11 disability categories, autism was in the lower third of college enrollment and graduation (Sanford, et al, 2011). These figures show that more work is needed to achieve equitable postsecondary access for autistic learners.

There is growing support for the idea that part of the difficulty faced by autistic individuals is the inflexibility of educational institutions (Mullen, 2015). Nicholas W. Gelbar and colleagues (2014) conducted a systematic review of published studies from 1999-2013. Based on analysis of 20 articles describing the collegiate experiences and supports for autistic adults, Gelbar et al. concluded that research about autistic college students is scarce. This article proposes that developing a positive autistic identity is a key to academic and life satisfaction, and it discusses the impact of two prevailing paradigms: the autism acceptance movement and the medical model, on identity development.

Autism Acceptance Perspective

Those in the autism acceptance movement define autism as a variation in normal human diversity to be accommodated and embraced rather than a condition that must be cured. This view is rooted in the perspective of disability as a social construction rather than an inherent, immutable, and broken part of a person. This view does not deny individual differences, such as heightened sensory sensitivity that can come with autism, but highlights that the social environment causes stigma, not the difference (Wendell, 2013). The person who has heightened sensory sensitivity may perform very well in a low-stimulation environment but become physically uncomfortable to the point of agitation in an environment that has too many irritants. The problem and the solution are not within an individual, but rather in the person-environment fit. A related concept is neurodiversity: the notion that learning differences like dyslexia, attention deficit disorder and ASD are cognitive variants with strengths that contribute to the evolution of technology and culture rather than 'check lists of deficits' that define a disorder (Silberman, 2015). Autism acceptance is a specific aspect of the broader neurodiversity movement, a movement started by autism advocates and used in social justice efforts for a range of neuro-based differences including ADHD and dyslexia (Armstrong, 2011).

Emerging voices of autistic people and allied educators are discussing signs of autistic culture. Autistic bloggers are numerous, including Lydia X. Z. Brown, writer of the widely read blog Autistic Hoya, and internationally published autistic author John Elder Robison. A growing body of popular literature includes the work of John Elder Robison, Temple Grandin, Daniel Tammet, Donna Williams, and others who explain the first-hand experience of autism. Popular literature about ASD includes the work of Oliver Sacks and the well-known juvenile fictional work by Mark Haddon. Haddon's novel, The Curious Incident of the Dog in the Night, gained status as a best seller and won the Whitbread Book Award in 2003 (Hacking2010). Groups such as The Autistic Self-Advocacy Network (ASAN), Autism Women's Network (AWN), and Aspies for Freedom organize via the Internet to support people with ASD from a non–cure point of view. These cultural developments are the work of autistic people defining what autism means and making an empowered space for others. The developments grow out of increased communication, often facilitated by the increasing availability on line technology which has allowed members to work together, support one another, dispel stereotypes, and exchange ideas in a non-face-to-face setting.

According to the autism acceptance perspective, ableism is the central difficulty for neurodiverse individuals. Parallel to sexism and racism, ableism is a cultural status quo that privileges an able-bodied "norm" and systematically denies equality for those who fall outside the norm (Billawalla & Wolbring, 2014). The effects of ableism are both internal and external, impacting an individual's self-esteem and treatment by others. Overt examples include bullying, exclusion, hate language, and direct discrimination, as well as well-intentioned "help" that does not respect the autonomy of persons with disabilities. Subtler manifestations of ableism include stereotypes, prejudicial attitudes, and unquestioned societal conventions that dis-privilege autistics. Like the other –isms, ableism is difficult to change because it is deeply rooted in culture and unintentionally perpetuated (Adams et al., 2013).

A position statement of the Autism Self-Advocacy Network (ASAN) points to the inequality stemming from ableism, "Many of the barriers faced by Autistics and others with disabilities arise not from the condition itself, but from prejudice and stereotypes that have the effect of excluding us from full participation as citizens with equal rights and responsibilities in society," (2015). According to this view, the gap will be reduced when mainstream culture accommodates the different ways that autistic people function socially, and it is speculated that this is happening already on college campuses (Robertson & Ne'eman, 2008). The need for cultural equity for persons with disabilities has been recognized by the United Nations Convention on the Rights of Persons with Disabilities (UN, 2007, Article 30, paragraph 4).

Links between the gay rights movement and deaf rights movement have been made to support the autism acceptance perspective (Solomon, 2012). While the parallels are not uniform, both rest on the notion that in the mid-Twentieth Century in the West, being gay (APA, 1968) or being deaf was seen as a malady located within an individual, and now they are understood as human diversity (Jaarmsma & Welin, 2012). Paralleling and fueling this social change has been the emergence of deaf culture (Halpern, 1996) and gay culture as supportive communities focused on the distinctive issues and experiences related to being deaf or being gay. In the twenty-first century they have become established cultures and are recognized for the contribution to larger mainstream culture. For example, "deaf gain" reframes deafness as a phenomenon that has the potential to contribute to and improve society. It is argued that enhanced capabilities of deaf people in areas of facial recognition and spatial perception are part of a unique way of being, and deaf culture has led to the expansion of the general offerings in the fields of language, education, and theater. (Bauman & Murry, 2014). Participation in these cultures is seen as a part of the journey to a positive identity (Hardiman & Jackson, 1997).

In addition to online niches, the autism acceptance movement has mainstream coverage in articles such as "How autistic adults banded together to start a movement," Washington Post, July 2015. The piece profiled Alanna Whitney, an autistic woman, as she prepared to join a gathering of adults with autism—where she could "relax and be herself." Hanna Rosqvist discusses autistic spaces and the importance of advocating for such spaces where friendships can develop (Rosqvist, Brownlow, & O'Dell, 2015). Voices of autistics are also heard in the media with increased news coverage, an HBO special Autism: The Musical (2007), and even a comedy troupe known as Asperger's Are Us. These cultural offerings are likely a cause and effect of greater autism understanding in the general population.

Energized by the work of autistics and their allies, autism acceptance is a social justice movement working to challenge ableism by promoting equality, access, and participation for autistics. Despite its empowering message, autism acceptance is controversial. For some, it is seen as an equal rights movement, liberating individuals from being seen as pathological just because they are different. For others, autism acceptance neglects to account for the challenges experienced by those who live with the most severe forms of ASD (Jaarsma & Welin, 2012; Solomon, 2012), which may preclude independent living and be accompanied by related medical issues such as seizure disorders, gastro-intestinal conditions, obesity, and insomnia (Jones, et al. 2015). As prevalence rises and research and popular press on autism continues, the tension between these perspectives will be at the core of identity development for autistic individuals.

Medical Model View of Autism

In contrast to the philosophy of autism acceptance, Autism Speaks, a giant and controversial global advocacy group, has the following mission: "We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism," (Autism Speaks, 2016). Typing "autism" into Google will yield Autism Speaks as the first site that comes up, an indication of the prevalence and influence of the medical model approach to autism.

Scientific inquiry is also weighted toward a disease view of autism. Studies of genetics show multiple, complex risk factors (Kopp, Climer, & Dougherty, 2015) and use disease-based terminology such as "overall disease risk" and "pathogenesis" (Talkowski, Minikel & Gusella, 2014). From a neurocognitive perspective, ASD has been called "a common and often highly debilitating neurodevelopmental condition" (Pellicano, 2012), which is associated with executive function (EF) impairment. EF is a set of cognitive processes involved in governing the capacity to start, stop, and shift focus, It effects working memory, inhibition, planning, and organization. Autistic individuals who had been diagnosed but are so high functioning that they no longer meet the diagnostic criteria have been found to have relative EF weaknesses (Troyb, et al. 2014).

Taken together, these literatures focus on autism as a pathology. Research attempts to characterize the deficits, uncover disease etiology, and test potential curative approaches. Advances in quality of life for autistic persons created as a result of scientific and medical findings is beyond the scope of this article; however, it is acknowledged that this research is likely the outcome of good intentions and has led to greater understanding of the intricacies underlying ASD.

Summary Autism Acceptance and Medical Perspectives

The autism acceptance and medical perspectives agree that life can be difficult for autistics, but they differ in their understanding of the primary source of the difficulty. Autism acceptance focuses on prejudices and rigid conventions in society that are stacked against neurologically diverse individuals, while the medical and scientific communities focus on genetic, biological, cognitive, and behavioral differences that accompany ASD and consider them to be deficits. Conflict between these perspectives is significant. For example, while Autism Speaks wields influence with a $60 million budget, it is widely criticized by advocates for its medical model perspective, lack of autistic leadership, and fear-mongering approach to raising funds (Robison, 2013).

It is within this context that autistic people are forging identities, particularly during the college years. In short, autism acceptance says, "You're okay; they don't understand" and a medical perspective says, "You're not okay, but maybe you can get better." The autism acceptance perspective empowers a more positive sense of self than the medical perspective; however, identity processes are complex and each perspective may contribute to growth. While medical model advances can add to quality of life for autistic individuals, this perspective is limited in supporting positive identity development because it is designed to study what is wrong. By contrast, the autism acceptance movement frames autism in a positive light and creates community, both of which are critical for positive identity development. The following section briefly summarizes Gibson's (2006) identity development model and considers the impact of the autism acceptance movement and medical model at each stage with the aim of enriching knowledge about how to work with diverse students.

Identity Development

The development of a stable, positive identity is a core feature of well-adjusted adult life, and emerging adulthood is an active time for identity development (Arnett, 2004). Self-knowledge and abiding identifications—with music, social groups, political views, ethnic heritages, hobbies, philosophies, etc. enables a person to create stable, satisfying social relationships and fitting occupational pursuits. The way a person perceives family, community, school, peer group and the media all provide context for identity development. The person who knows and likes herself is best able to forge path that is suitable and fulfilling.

Developmental psychology is rich with models of how identity comes about, including the seminal Identity and the Life Cycle by Erik Erikson (1959) and Education and Identity by Arthur Chickering and Linda Reisser (1993). Numerous social identity models describe unique identity processes experienced by individuals who belong to minority groups living within a majority culture. These diverse models share core features that identity is grown over time, that it happens in a socio-cultural context, and that stable identity it is critical to human flourishing (Quinones-Rosado, 2010). Following this tradition is psychologist Jennifer Gibson's Disability Identity Development Model (2006), which sheds light on how disability identities are formed.

In Gibson's model, individuals with disabilities can go through three distinct identity stages: passive awareness, realization, and acceptance. The stage model is not a rigid set of steps, but a general pathway that has been observed in individuals over time. This section circles back to the autism acceptance movement and the medical model, and speculates about the positive and negative impact of these perspectives on identity development. For the purpose of this discussion, it is assumed that Gibson's model can be applied to ASD identity paths, but this has not been empirically tested. This is a theoretical discussion intended as food for thought and, possibly, the basis for future empirical inquiry.

In the first stage, passive awareness, which is associated with childhood but progressing into adulthood for some, the person does not identify with the disability and may try to keep it a secret. Effort will be made not to associate with others who have a disability. It is likely that the medical perspective of ASD would be most appealing at this stage based on an internalized normative view of human functioning from which ASD is an aberration. Language in the literature such as "debilitating condition," "suffering with," and "pathology," underscore why a person would want to keep his condition a secret, after all, it is seen as a dehumanizing fate by accomplished doctors and researchers. By contrast, the autism acceptance perspective may be rejected by a person at this stage. If ASD is a source of shame or masked with denial, it makes little sense to associate with those who are trumpeting and celebrating their ASD. At this initial stage, the view of self is strongly influenced by ableism and views of the individual's prevailing culture.

Realization, the second stage, may happen in adolescence and early adulthood. In this stage, the person may face her condition directly and experience negative feelings about it. She may try to overcompensate for perceived weaknesses or lash out in anger or helplessness about her plight. According to Gibson's research, self-hate, anger, and concern with what others think are common at this stage.

While the following research was not conducted using Gibson's model, it echoes themes of emotional distress matching the realization stage. In a university study, autistic students described the challenges and positive aspects of their collegiate experience. They reported that feelings of anxiety, depression, and loneliness are prominent in their college experience, as are difficulties managing workload, time, sensory input, and new social demands (Gelbar, Shefyck , & Reichow, 2014; Van Hees, Moyeson, & Royers, 2014). College faculty members have observed autistic students working with similar social and anxiety-based challenges (Gobbo & Shmulsky, 2014).

A person in the realization stage may rebel against self-negating messages, such as those that are prominent in the medical model, which uses the language of pathology, disease, and hope for a cure. Places where she perceived messages that she is broken, sick, or less than others may be the target of anger, and the medical model language conveys such messages. At this stage, the autism acceptance perspective may offer hope with its positive, empowering messages about autism. Instead of making costly efforts to fit in a neurotypical world, an autism acceptance perspective suggests that the world must, instead, accommodate autism-based differences. Joining an autism-friendly community is a way to reconcile the dissonance and knowing one has ASD and knowing the negative messages about ASD.

It is also possible that an autistic person at the realization stage may seek to address challenges by using medical and therapeutic advances. Upon facing her profile more directly, the autistic person may learn strategies that enable her to navigate the neurotypical world in a way that enables her to better meet her goals in academics, social connection, employment, and other areas. In autism activism literature, this is called "passing," and it is known to be an emotionally costly way of being for an autistic person (Endow, 2014).

The final stage is acceptance; in this stage, the person embraces his differentness. He may become active in disability causes, befriend others with disabilities, and see himself as equally relevant and valuable as individuals who do not have a known disability.

Gibson's acceptance stage aligns closely with the autism acceptance movement, which also focuses on empowerment for autistics, celebration of traits and strengths, and forging cultural connections among like-minded others. The writers, artists, bloggers, and online networks described earlier in this essay are voices for autism acceptance, both as a movement and as an identity status. While challenging an ableist culture is key to Gibson's acceptance stage, a person operating at this level may also choose to use knowledge from the pathology-based medical model with less risk. Because acceptance is authentic and self-created, the person can maintain a strong sense of self despite messages about deficit from the outside. For this reason, he may also take usable insights from the medical perspective without damage to his sense of self.

Gibson's model shows how positive identities are formed, and her research has found that many adults reach the stages of realization and acceptance (2006). From an identity lens, it is clear that the autism acceptance movement supports the quest for positive identity, and the influential medical model offers little in the way of identity support. This is not news in the disability studies community, which continues to advocate for ending a pathology-based understanding of disability and recognizing the value diversity. Postsecondary institutions are in a unique position to use the insight from disability studies to help all students, including autistics, forge positive identities.

Postsecondary Practices to Support Autistic Identity

Being a college student is a valued social role, and the psychosocial benefits to students who have ASD include improved self-esteem, access to a valued social role, and greater community involvement (Hart, Grigal, & Weir, 2010). Autistic students bring diverse strengths to the postsecondary academic setting. Ability to focus for extended periods, attention to detail, deep knowledge in specialized areas, adherence to rules and protocols, and outside-the-box thinking are among the strengths noted by postsecondary faculty about college students who have autism (Gobbo & Shmulsky, 2014).

Even when achieving academically in college, students who have ASD report social and emotional challenges. In a study of college students who self-identify as having ASD, 80 percent agreed that they have the academic skills to succeed and only 41 percent said they have the social skills needed. Students in this study also noted loneliness, roommate issues, feelings of isolation, and depression in their college experience (Gelbar, Shefyck & Reichow, 2015). Social and executive function challenges were identified in a qualitative study of autistic students transitioning to college (Alverson, Lindstrom & Hirano, 2015). A discussion of the link between psychosocial difficulties and identity development are beyond the scope of this article; however, it may be productive to examine their connection in future research.

Students forging an autistic identity will have different needs at different points in their journeys. Institutions can support development with the dual aims of creating widespread acceptance for autism while also providing social pragmatic support for individuals. These concrete actions can happen harmoniously and simultaneously, hopefully resonating with students at various levels of self-understanding.

To cultivate a positive identity, it is necessary for the autistic person to frame autism as positive or neutral, not negative, and to find a community of like-minded allies. Colleges and universities that are interested in the social development of its students must cultivate ASD-positive communities, so that autistic students can find solidarity and understanding. Disability-based discrimination and internalized ableism are among the forces that autistic students face, and community support can be a buffer and a source of strength. Colleges and universities can promote autism acceptance by nurturing autistic groups and by educating students, faculty, and staff about this form of neurodiversity.

If autism were entirely understood and accepted in all of its manifestations, then it may not be necessary to provide social pragmatic instruction, but acceptance is still emerging. There are costs for behaving outside social norms, and autistics often pay this price. Therefore, a complementary suggestion is for postsecondary institutions to offer social pragmatic programming to students who seek it out or who are referred by a disability office. Classes, groups, and mentors that subtly teach self-awareness and social pragmatic skills could be sources of support for those who are actively grappling with an autism identity and desire to gain skills that will enable access to social communities.

Concrete Suggestions for Postsecondary Institutions

Support Autism Identity and Culture

  • Nurture student initiatives related to ASD identity, such as ASD blogs, news columns or clubs, mentorships and co-curricular opportunities geared toward students with ASD.
  • Promote social cyber platforms which may allow for more social participation among individuals who prefer to avoid face to face participation.
  • Challenge faculty to make their curricula and teaching styles more ASD friendly. Course possibilities include but are not limited to, explaining expectations with specificity and clarity, providing explicit consistent structure to classes, providing opportunities in course work for students to exercise their strengths.
  • Offer academic curricula in diversity and disability studies, both fields that illuminate and change prejudice in regard to difference.
  • Support research that can advance this perspective including ethnographic research, positive psychology and creativity research that focuses on ASD.
  • Invite popular autistic figures to campus.
  • Involve the autistic community on matters related to research, teaching, support programs, and campus diversity

Provide Social Pragmatic Education

  • Offer first year programming targeted at students with ASD. These programs would include elements available to many first year students making the adjustment to college, along with components that focus on executive function and social interaction strategies.
  • Train a small cadre of academic advisors and counselors who have an understanding of and sensitivity to students in this group. They can serve as important guides as students make academic decisions early in their college careers.
  • Use peer mentors, trained students who have an understanding and recent experience of the challenges faced by students with ASD.
  • Offer opportunities for students to be exposed to information on ASD from both an autism acceptance perspective and a medical model perspective with the goal of helping students to understand their own relative strengths and weaknesses as learners.
  • Ensure that disability offices have up to date information on accommodations, technology-based and otherwise, for students who have ASD.

Conclusion

As students move through the changes associated with forming an identity that includes ASD as a key element, many will for at least periods of time find themselves between the two perspectives described here. They may struggle early on with their own desire to "fit" into academic and later work environments, while finding frustration with the inflexibility of others in their communities. Autistic individuals are creating identities in a world that often sees them as broken and in need of a cure, a view found in the medical model. While medical advances have the potential to make aspects of life better for autistics, framing autism as pathology may be detrimental to healthy identity and counter to philosophies of respect for diversity. The autism acceptance movement is a competing paradigm to understand autism. From this view, autism is an identity, not a sickness. Online groups, writers, bloggers, and artists who have autism are creating a supportive environment for identity development. It is likely that the tension between these paradigms will persist for the foreseeable future, especially if ASD diagnoses increase.

It is often the mission of colleges and universities to provide an environment for co-curricular social growth for all students. Understanding competing views of autism is essential for college personnel who hope to foster positive development in autistic adolescents and emerging adults. This understanding will aid educators as they work to meet ethical and legal obligations to optimize the collegiate environment for students. To this end, there are concrete measures to nurture autism acceptance movements on campus and promote social pragmatic learning. Sensitivity to the challenges students face as they develop an identity influenced by the neurological differences of ASD is an essential element in building the best possible environment for positive personal development.

Culture contributes a great deal to identity as autistic students choose to merge with or exist alongside the prevailing college culture. Postsecondary institutions have a history of tolerance for differentness and programs that are designed to advance narrow bands of specialized knowledge. Both are hallmarks of ASD. That same tolerance contributes to making college campuses verdant environments for the growth of autism acceptance, a movement that promises to realize the potential of neurodiverse learners and thinkers.

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Endnotes

  1. Development of a positive autistic identity is the emphasis of this article, so identity-first language, such as "autistic person" is used rather than the person first language advocated by the APA (1992; 2016). Naming autism is a debated topic as Lydia Brown expressed in a 2011 blog post. She wrote, "In the autism community, many self-advocates and their allies prefer terminology such as "Autistic," "Autistic person," or "Autistic individual" because we understand autism as an inherent part of an individual's identity—the same way one refers to "Muslims," "African-Americans," "Lesbian/Gay/Bisexual/Transgender/Queer," "Chinese," "gifted," "athletic," or "Jewish." On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as "person with autism," "people with autism," or "individual with ASD" because they do not consider autism to be part of an individual's identity and do not want their children to be identified or referred to as "Autistic" (Brown, 2011). Autism Spectrum Disorder (ASD) is the name used in the APA's Diagnostic and Statistical Manual-5th Edition (DSM-5). The term Autistic is a more general descriptive term. Both are used here interchangeably.
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