The neurodiversity movement takes an identity politics approach to autism spectrum disorders, proposing autism spectrum disorders as a positive “neuro-variation” to be approached only with interventions that assist individuals without changing them. This article explicates the concept of neurodiversity and places it within the context of autism spectrum disorders advocacy and treatments. It draws from fieldwork conducted in a midwestern urban center, from June through October 2008, with support groups for parents of children with autism spectrum disorders. Neurodiverse sentiments were identified within these groups, despite the pursuance of treatments to which some neurodiversity advocates might object. Therefore, although neurodiversity has influenced parents of children with autism spectrum disorders in this sample, its role as a medical advocacy group has not been fully realized. This article attempts to place neurodiversity in better conversation with advocates and medical professionals.
Autism spectrum disorders (ASD) have become an increasingly prominent issue in politics and popular media over the last several years, with reported diagnoses skyrocketing to as many as 1 in 91 (Kogan et al., 2009) and an estimated average prevalence of 1 in 110 children diagnosed with ASD (Centers for Disease Control and Prevention, 2010). Within the network of organizations, industries, and systems that composes U.S. medicine, ASD are defined as disabilities and fall under the heading of “Pervasive Developmental Disorders” in the current Diagnostic and Statistical Manual of Mental Disorders—Fourth Edition, Text Revision (DSM-IV-TR; American Psychiatric Association, 2000). ASD include autistic disorder, Asperger syndrome, and pervasive developmental disorder not otherwise specified (PDD-NOS). Per the DSM-IV-TR, pervasive developmental disorders “are characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behavior, interests, and activities” (p. 69). These three areas of “impairment” form a triad of characteristics central to most descriptions of ASD emerging within the culturally dominant discourse advocated by the medical and educational authorities that often identify and manage people with ASD. However, as a British scholar and parent of a child with ASD explains, “To read about autism in the United States is to confront an often bewildering array of medical and therapeutic methods and acronyms, put forward and contested… driven by argument, with no consensus on any aspect of the condition” (Murray, 2008, p. 21). This outsider perspective is useful in identifying the culturally specific nature of ASD in the United States and illuminating the way in which both the definition and management of ASD in the United States is contested. Such contested issues of diagnosis, management, and access to services arise saliently within advocacy movements.
Advocacy organizations around ASD emerged almost simultaneously with the establishment of autism as a discrete condition. Leo Kanner, who first described autism, worked closely with Bernard Rimland, father of a child with autism and founder not only of the Autism Society of America, but also of the Autism Research Institute (ARI; Eyal et al., 2010). Rimland founded not only the Autism Society of America, but also the Autism Research Institute (ARI). ARI generated possibly the best known advocacy movement in this field, Defeat Autism Now! (DAN). DAN advocates a biomedical approach to ASD, based around a casein-free gluten-free (CFGF) diet, supplements, and other interventions such as chelation (Adams, 2007). Since 1995, DAN has held annual conferences for “carefully selected physicians, researchers and scientists” working on developing and advocating these treatments (ARI, 2008a). At the time the research reported in this article was conducted, ARI provided a list of clinicians, titled “Defeat Autism Now! U.S. Clinicians,” who provide such treatments and attend DAN clinician seminars at least once every two years, and lists of naturopaths, homeopaths, and nutritionists (ARI, 2008b). DAN rejects the disability model of ASD as pessimistic and discusses ASD instead as a disease from which someone can be “recovered” (Edelson, n.d.). Since the completion of this study, ARI has substantially changed its DAN practices. It announced that it would hold future meetings as “ARI conferences,” partly in response to self-advocate criticism of the Defeat Autism Now! name (Silverman, 2012, p. 176), and stopped maintaining a practitioner list (Silverman, 2012, p. 182; for an in-depth discussion of changes undergone in 2011, see Silverman 2012, chapter 5).
The prominent organization Autism Speaks also invokes a disease model in searching for a “cure” (Autism Speaks, 2011). Both the disease and disability models of ASD may use behavioral therapists, physical therapists, occupational therapists, psychiatrists, and sensory integration specialists in hopes of treating, recovering, or curing ASD. Organizations and individual spokespersons have a variety of terms they prefer to describe their goal, but the underlying model of disability versus disease divides the goals into two categories: those that hope to manage symptoms and behaviors associated with the lifelong condition of ASD and those that hope to ultimately eliminate ASD.
Perhaps less well known is the advocacy of neurodiversity, a type of autism pride that posits ASD as naturally occurring, and even positive, neuro-variations in human cognitive wiring that should be celebrated rather than eliminated. The neurodiversity approach sees ASD as a disability and accordingly takes a disability rights approach. Neurodiversity advocates explain that “supports for autistic people should be aimed at helping them to compensate, navigate, and function in the world, not at changing them into non-autistic people or isolating them from the world” (Sinclair, 2002). Such assistance supported by neurodiverse organizations include “speech therapy, sensory integration therapy, and general counseling” as well as “emergency housing, specialised medical services, and employment support services” (Aspies for Freedom, 2011). Perhaps most important, neurodiverse approaches to ASD heed the motto of the broader disability rights movement: “Nothing about us, without us” (Autistic Self-Advocacy Network [ASAN], 2011).
This article briefly describes the neurodiversity approach to ASD, introducing it as a consideration for policies and practices that address parents of children with ASD, such as the family-centered approach to care (described in, for example, Bamm and Rosenbaum 2008; Johnson et al., 2008; and Shelton and Stepanek, 1994). Within a “Medical Home for Autism,” this approach holds that “autism intervention strategies must be considered within the context of the overall family and their circumstances, needs, culture and preferences” (Waisman Center, 2008, p. 6). This article draws on data from an anthropological study to present one such influence on the context of these families that often goes unrecognized: neurodiverse perspectives on raising a child with ASD. Identifying the influence of neurodiversity will contribute to the development of family-centered care and other programs and policies focused on ASD by illuminating a previously underdiscussed perspective.
Although coinage of the term neurodiversity has been credited to Judy Singer (Ortega, 2009; Savarese & Savarese, 2010), others point to Jim Sinclair's 1993 speech “Don't Mourn for Us”—which addresses parents of autistic children and expresses hurt at attempts to change individuals with ASD—as the starting point of the “movement” (Boundy, 2008). This landmark followed quickly after Sinclair's cofounding of the Autism Network International (ANI) in 1992, which Ortega described as a reaction against the “emphasis on treatment and cure” among parents' organizations (2009, p. 428). The neurodiversity movement has since expanded. ANI hosts an annual retreat-style conference, Autreat, for individuals with ASD (for information on Autreat, visit their official Web site at www.autreat.com). The Web site neurodiversity.com acts as a library of references useful to those interested in a neurodiverse view of ASD. It is maintained by Kathleen Seidel, mother of a son with an ASD diagnosis, who also identifies traits characteristic of ASD in herself. Several Web boards facilitate communication between Internet users with ASD, such as the British-based AspiesForFreedom.org, an explicitly neurodiverse forum. Moreover, the Internet abounds with “bloggers,” who identify with neurodiversity and write about their experiences and perspectives (Clark & Van Amerom, 2008).
Neurodiversity advocates, particularly the Autistic Self-Advocacy Network (ASAN), have contributed to the political world of ASD in the United States by successfully campaigning against New York University's “Ransom Notes” campaign in 2007 (Kras, 2010) and protesting Autism Speaks, including their similar “I Am Autism” video (Wallis, 2009). In 2010, ASAN's founder Ari Ne'eman began serving on the National Council on Disability (Silberman, 2010). In Canada, Michelle Dawson successfully argued against federal funding for Applied Behavior Analysis (ABA) in the Canadian Supreme Court (Orsini, 2009; Silverman, 2008) and has collaborated with psychiatrist Laurent Mottron in conducting neurodiverse psychiatric research (e.g., Dawson, Soulières, Gernsbacher, & Mottron, 2007).
“Intervention,” the neurodiverse approach holds, “should aim at helping the autistic child manage and/or surmount his/her particular ‘surface’ sensory or social challenges without attempting to fundamentally alter his or her essential being” (Nadesan, 2005, p. 208). Objection to such alteration can apply to both the disability model and the disease model described above. Aspies for Freedom expresses objections to some behavioral therapy approaches most clearly. Their homepage explains that they object to “any attempts to make [individuals with ASD] ‘normal’ against their will.” They strive “to oppose physically or mentally harmful ‘treatments’ targeting autistic people,” including “20–40 hr/week ABA, restriction of non-harmful stimming [self-stimulatory behavior] and other autistic coping mechanisms” (para. 11). They criticize treatments not only for the use of aversives and the common advocacy of long, strenuous hours, but also for “focusing on ‘normalisation’ rather than help” (para. 26). They further seek “to prevent eugenic elimination of autistic people by opposing pre-natal testing for autism” (Aspies for Freedom, 2011, para. 5). The neurodiverse response to cure-based approaches can be observed in the debate between Autism Speaks and the Global and Regional Asperger Syndrome Partnership (GRASP) over the very word. Autism Speaks focuses on curing ASD, but GRASP, an organization of adults with Asperger syndrome, finds the term offensive (Carley, n.d.). Sinclair (1993) expresses a similar rejection of curing when he explains “autism is not an appendage” that can be separated from a “normal child” buried beneath. Aspies for Freedom (2011) specifically aims “to oppose the idea of an autism ‘cure’” (para. 18) for similar reasons.
Although this article uses person-first terminology, many advocates of neurodiversity explicitly prefer the adjective autistic because, in the words of Jim Sinclair (1993), “autism is not an appendage” (para. 5). Rather, “it is not possible to separate the autism from the person” as person-first language does grammatically, “and if it were possible, the person you'd have left would not be the same person you started with” (para. 6). In the wake of writings like these, many scholars self-consciously use both “with autism” and “autistic” in their work, to honor the validity and good intentions of each perspective (e.g., Schreibman, 2005; Grinker, 2007; and Nadesan, 2005).
The body of scholarly literature on neurodiversity is small, but growing. In 2010, the online journal Disability Studies Quarterly featured a special issue Autism and the Concept of Neurodiversity, addressing “insider and outsider discussions of ASD” (Savarese & Savarese, 2010, para. 40). The issue uses a critical theory approach and includes publications on the history of neurodiversity, media studies of ASD representation, cultural critiques, and creative works by individuals on and not on the spectrum (Savarese & Savarese, 2010, para. 14). Beyond this informative issue, other qualitative research thus far has included descriptions of the movement (e.g., Boundy, 2008; Bumiller, 2008; Nadesan, 2005; Offit, 2008; O'Neil, 2008; Ortega, 2009; Silverman, 2008) and discourse analysis (e.g., Broderick & Ne'eman 2008) that draw on print and electronic media to define the concept of neurodiversity. Discussions of ASD policy consider the effect of neurodiversity nationally (e.g., Baker, 2006; Baker & Steuernagel, 2009; Orsini, 2009) or individually from a teachers' perspective (e.g., Jurecic, 2007). A theme issue of The Journal of Ethics in Mental Health considers neurodiversity's implications for bioethics (e.g., Fenton & Krahn, 2007; Glannon, 2007). Scholars have thus far addressed neurodiversity primarily through materials available online. The prominence of online materials has been attributed to greater ease in communicating online for individuals on the spectrum (e.g, Bagatell, 2010; Ortega, 2009). However, the role of neurodiversity offline has been underinvestigated, leaving the lived experience of neurodiversity still in need of study.
Advocates and scholars alike have presented a picture of opposition between parents of children with ASD and adult and adolescent self-advocates with respect to their conceptualizations of ASD (Clark & Van Amerom, 2008; Orsini 2009). In the Autism Speaks/GRASP debate, a representative from GRASP considers that the goals of these groups may not be harmonized, noting, “What helps parents is often mistakenly spun as helping the autistic or ‘aspergian’ individual (and, to be fair, vice versa)” (Carley, n.d., para. 16). Orsini (2009) goes so far as to classify the parental perspective as “the autism movement” of parents seeking policies oriented toward access to treatments, versus “the autistic movement” of self-advocates seeking to create a positive identity on the basis of a disability rights paradigm. Ortega (2009) presents a more nuanced view of the relationship between neurodiversity and approaches seeking to change people with ASD, particularly the much celebrated ABA therapy and the more controversial cure approach of organizations such as Autism Speaks. Ortega does present this relationship as primarily between self-advocates who describe treatment as oppression and pro-cure activists, largely parents. However, noting such examples as Temple Grandin and Judy Singer (adults with ASD who support some interventions) and Kathleen Seidel (the mother/advocate who founded neurodiversity.com), Ortega points out that “neither all parents oppose self-advocacy movements, nor all autistic adults favor neurodiversity” (p. 430). Moving beyond a strictly oppositional framework, Ortega argues that ASD activism/advocacy “is defined by conflicting discourses or ideologies, rather than by homogenous groups with antagonistic positions” (p. 427). This article addresses the need for work drawing from offline sources that engages neurodiversity and contributes to this problematization of the opposition between parents and neurodiversity by providing an on-the-ground example of neurodiverse sentiments from an exploratory study with support groups for parents of children with ASD.
A special issue of Ethos subtitled Rethinking Autism, Rethinking Anthropology demonstrates the value of anthropological inquiry into this field. The editors identify the value of anthropology in moving away from the biomedical discourse to a phenomenological and ethnographic discourse that focuses on the lived experiences of those affected by ASD (Solomon & Bagatell, 2010). Using this approach, Bagatell (2010) presents findings from her participant observation with a support group run by and for adults with ASD. She links the emergence of a community formed around ASD to three factors: broadening diagnostic spectrum, self-advocacy movement with disability rights, and the Internet. Although Bagatell does not focus explicitly on neurodiversity, she does find it co-existing among discourses of curing and treating among support group participants. Whereas Bagatell conducted participant observation among a support group for adults with ASD, this article presents similar research among support groups for parents of children with ASD. It contributes to the growing literature on ASD by introducing an ethnographic component that looks at the influence of neurodiversity among parents actively engaged in managing their children's ASD.
This study draws from field research conducted in a Midwestern urban center from June to October 2008 among support groups for parents of children with ASD, supplemented by interviews and ASD literature provided by these groups. Support groups offered an opportunity to interact with parents who were at the time explicitly engaged with their role as parents of children with ASD and with the act of community building. Data were gathered using a cross-sectional multi-method ethnographic approach, consisting of participant observation in support groups and qualitative interviews and contextualized with supplementary documents. Informants parented children with a variety of diagnoses and ages ranging from three to 18, but were drawn together by their common self-identification as a “parent of a child with ASD.” All research was approved by the Washington University Institutional Review Board and funded by the Office of Undergraduate Research.
Participant observation occurred in three settings with a total of 12 informants. Two sessions with a total of 5 informants occurred at a nutritionally based support group that met in a health foods store and discussed dietary and related approaches to curing their children. The first meeting involved a mother with two teenage children on the spectrum, one boy and one girl, and the coordinator, an occupational therapist. The second meeting involved a parent of two preteen adopted girls, only the elder on the spectrum; a mother of two teenage children, a girl and a boy, whose son had Asperger syndrome; and a brand new member with a recently diagnosed young son. The third session, with seven informants, occurred at a behavioral therapy-based group that met in an ASD organization's community center and discussed treatments and activities for their children. In addition to its coordinator, this meeting was attended by four family groups: one mother with three children, the younger two (a boy and a girl) on the spectrum; one stepmother parenting two children with their biological father, one son with Asperger syndrome; one mother–grandmother pair discussing a (grand)son with ASD; and one mother–father pair with an older teenage son with ASD. Detailed notes were taken during and after the meeting, a format preferred by informants (Emerson, Fretz, & Shaw, 1995; Lofland et al., 2005). Examples presented below are adapted from these notes.
Five interviews were conducted using the semi-structured qualitative interviewing format outlined by Weiss (1995). Three interviews occurred over the phone, two in person at local cafés. Interviews lasted from approximately 30 to 90 minutes. Three informants (two phone interviews and one in person) attended a behavioral therapy-based group whose members did not consent to have the ethnographer attend a meeting. These interviews take the place of intended participant–observation in that group, which was coordinated by the same ASD organization as the other behavioral therapy-based group. One of the informants (interviewed in person) worked with ASD policy professionally and had two teenage sons on the spectrum. The other two had two children each: an elder son with ASD (one preteen, one preschool aged) and younger child without a diagnosis. The remaining phone interviewee worked for a statewide peer-to-peer mentoring organization for parents with ASD and had a son with developmental disabilities. The remaining in-person interviewee founded a fund-raising organization focused on providing families affordable sensory integration equipment and relationship development intervention (RDI) therapy and had a young son with ASD and two younger daughters not on the spectrum.
The majority of informants from this sample were White Anglo women, with four exceptions. One mother in the nutritional group, married to an American military man, emigrated from Eastern Europe. A two-person family unit in the behavioral therapy-based group seemed to be of Latin American descent. One father attended a support group with his wife.
Both groups, as well as the mother/professional who organized a not-for-profit, supplied documents that have contributed to this discussion of the politics and social world of ASD support. The behavioral therapy-based group provided a list of preferred specialists and a workbook on Groden Relaxation. The nutritionally based group provided an information packet containing a mission statement, magazine articles, DAN Conference publications, information on dietary supplements, and CFGF recipes. The mother/professional provided a brochure and mission statement for her organization. These documents constitute an important part of the experience of the group and therefore inform the analysis below by giving context and contrast for mothers' comments. Another mother/professional interviewed informally provided a wealth of materials on patient- and family-centered care, drawn upon in the conclusion as an important goal in the local field.
As no group particularly promoted neurodiversity, this perspective is supported through information from online sources, such as neurodiversity.com, Autreat.com, AutisticAdvocacy.org, and AspiesForFreedom.com. Use of these online sources is limited to Web pages, and does not include blogs, chats, or other information that may be considered human subjects research. Online sources also contributed to understanding the DAN (Autism.com) and RDI (RDIConnect.com) approaches to ASD discussed by mothers. Supplementary analysis of these documents provides a context for mothers' perspectives as well as a point of comparison on which to judge the influence of the “conflicting discourses or ideologies” described by Ortega (2009, 427). Much of this contextualizing exposition has been accomplished in the introductory sections above, which serves as a backdrop for the claims of influence presented in the following paragraphs.
Field notes and interview data were analyzed using issue-focused coding (Emerson et al., 1995; Weiss 1995). This process began with open coding in which field notes and interviews were read as a data set for emerging themes using the inductive research process of grounded theory (Bernard, 2006). Open coding yielded many preliminary themes, including neurodiverse sentiments. Once initial themes emerged, all data were recoded with a reading focused on identifying explicit and implicit themes relating to the overarching theme of neurodiversity and elaborating subthemes such as expressive positive ideas about ASD and resisting negative ideas about ASD.
In a study of coding methods and saturation, Guest, Bunce, and Johnson (2006) point to the value present in small sample sizes, concluding that for studies aiming to “understand common perceptions and experiences among a group of relatively homogeneous individuals, twelve interviews should suffice” (p. 79). As this sample (N = 17) addresses a highly focused study within a specific group, parents involved in the local ASD support network at this time, topics were saturated among these informants.
The organization that coordinated the behavioral therapy-based groups focused primarily, although not exclusively, on ABA. Documents provided at the support group included information on Groden Relaxation techniques and lists of preferred specialists and resources with a range of services both for ASD specifically (such as residential centers, developmental pediatricians, and geneticists) and simply for accomplishing routine visits (such as dentistry) with ASD-friendly practitioners. The nutritional group's information packet explicitly aligned the group with DAN and announced its focus on “recovering” children through a list of methods including nutritional, dietary, and secretin therapies as well as auditory integration training, sensory integration, ABA, and speech therapy. Certainly these groups provided a lot of overlap. However, they use them in different ways—some to treat but not to eliminate ASD and some to “fully recover” their children. Documents provided at the nutritional support group accuse “conventional” approaches as considering autism “incurable.” ARI retorts with the motto “Autism is Treatable,” meaning interventions can be used to accomplish “recovery” for children with ASD (Edelson, n.d.). This discourse highlights an ideological tension between approaches that seek to treat but not to cure ASD and approaches that seek to treat it for the sake of “recovery.”
Despite tensions surrounding particular approaches, observations and interviews with parents and parent/professionals reveal much overlap; few parents or professionals expressed solely a commitment to one approach. The behavioral therapy-based group's preferred practitioners list included DAN doctors and resources. At the support group session, the stepmother and the mother of the mother–grandmother pair began discussing the potential role of starches in their sons' daily functioning. The grandmother remarked that it was hard to find gluten-free foods, and the room began to buzz with suggestions of shopping locations. During individual interviews, two mothers from the other behavioral therapy-based support groups also mentioned the nutritional approach. One mother/professional explained that the DAN protocol had been invaluable in the treatment of her elder teenage son with classical autism. With her younger teenage son with Asperger syndrome, however, the protocol proved useless. When asked about the prevalence of this overlap of approaches she may have seen in her work with other parents, she replied, “Smart parents use both.” Another mother interviewed specifically mentioned why she did not use biomedical approaches such as those advocated by DAN with her preteen son. She explained that because his Asperger syndrome is mild compared with that of some other individuals with ASD, she has the “luxury of not having to try everything out there.” This statement was echoed by a mother of two (the elder teenage son has Asperger syndrome) in the nutrition-oriented group who explained, “When you get desperate, then you'll do it [the diet].”
The nutritionally based group also saw overlap with ABA therapy. One mother whose young son had recently been diagnosed and was doing well in ABA therapy attended the group for the first time. She repeatedly asked if the approaches advocated by this group would alone be enough and if she should discontinue ABA in favor of dietary approaches. No one outright supported this approach, but many shared their individual and second-hand success stories with the diet. One mother reported on an online group for enzyme supplements, explaining, “There's this mom who has apparently recovered three boys.” The coordinator also took this opportunity to share how she became involved with the nutritional approach. She knew a mother who started the diet 13 years ago after encountering it online. In two years, her son went from nonverbal to recovered. “If it weren't for [her and her son],” the coordinator explains, “I wouldn't be doing this, and we wouldn't be sitting here.” Ultimately, no one advocated abandoning ABA and merely putting biomedical approaches first.
These instances of overlap within support groups demonstrate that parents navigate a variety of approaches and ideologies in treatment-seeking behaviors, often pulling from approaches that have been discursively positioned as incompatible. Neurodiversity, in its opposition to normalizing approaches to ASD, has at times been presented as at odds with parents' approaches (Carley, n.d.; Clark & Van Amerom, 2008; Orsini, 2009). However, several themes emerged in their conversations and in interviews that indicated an influence of neurodiversity throughout this process. This section describes three ways in which participants expressed sentiments in line with neurodiversity: (a) by translating their child's behavior to others; (b) by expressing positive ideas about ASD; and (c) by resisting negative ideas about ASD.
Translating Child's Behavior to Others
Mothers and coordinators sometimes translated their child's behavior in ways that accepted the validity of ASD as cognitive variations rather than disorders. For example, when discussing a negative reaction to changed routine, the coordinator of the behavioral therapy-based group explained, “We all do that, he just takes it to the extreme.” The mother/professional with teenagers expressed this same perspective, defining ASD as “normal behavior to an extreme that precludes other normal behavior.” She tapped the table casually and compared this normal self-stimulatory behavior to the “stimming” behavior associated with ASD. Her normal stimulatory behavior taken to the extreme, she explained, would preclude other normal behavior, such as this conversation. She expressed a similar acceptance when she described affection among children with ASD, challenging the assumption that these children do not show affection by explaining they show it in different ways. She described this through a sample conversation with another parent: “Your child bites to show love? Mine puts his chin in my shoulder.”
These comments classify individuals with ASD as not so different from neurotypical people. This same mother/professional also expressed this theme when she explained her approach to treatment: Individuals with ASD must learn to manage negative emotions just like neurotypical individuals, who are trained to resist their own urges. Mothers also identified similarities in the needs of people with ASD and those without. During the behavioral therapy-based group, the coordinator discussed emotional management techniques, which two mothers commented would be useful for their husbands as well.
Expressing Positive Ideas about ASD
Mothers also expressed neurodiverse sentiments when they described the value and worth of their children with ASD, as it relates to the condition. The mother of a preteen son with Asperger's interviewed from a behavioral therapy-based group explained that not only is ASD a part of who her son is, a lot of his positive qualities are in fact “because of his diagnosis.” The stepmother from the other behavioral therapy-based group expressed a similar sentiment comparatively, saying, “My brother is not on the scale [i.e., does not have an ASD diagnosis] but he's gifted, so he was the odd kid out all through school, so he gets [my stepson].” This statement not only makes ASD understandable, it compares it with a valued trait: being gifted. A mother/professional explained that her young son with ASD offers her a new perspective on life. “Society is greedy,” she said. “My son teaches me to slow things down.” Neurodiverse sentiment also appeared within the nutritional group. The mother of teens reported her son's experience of ASD. She quotes him as telling her, “‘I'm a little socially awkward and people think it's adorable,’” commenting, “He's really grown into it.”
Resisting Negative Ideas about ASD
Narratives of resistance also reveal a neurodiverse mindset. The mother of a preteen son with Asperger's described her experience with a certain ASD awareness group in the area. She sometimes attends their events but is disheartened by their focus on the negative aspects of ASD. She notes that the negative focus does help to raise funds, but it offends her. She stresses that these are “great kids [who] have a lot to offer,” and it is therefore important to “keep things positive.” The mother/professional with teenage boys actively resists the misplaced sympathy of others who keep things negative, such as a school administrator who wrote a letter referring to this woman's “great burden.” “I hope,” she replied, “by the great burden you do not mean my child; he is my greatest joy. The burden has been dealing with people like you for the past 15 years.” This same mother/professional also describes her difficulty answering others' questions about her son in his presence. She worried that an angry response to questions like “what's wrong with him?” would validate the question and indicated something is, in fact, wrong, an impression she doesn't want to give him. The mother/professional with a young son responded to frequent sympathies from others by asking, “Why are you sorry? I'm not.” These narratives of resistance also follow neurodiverse principles by challenging negativity and accepting the potential for positivity within ASD discourses.
Mother/professionals also voiced specific objections to other approaches in ways not too dissimilar from the quoted objections on Aspies for Freedom's Web site. Two spoke out against Autism Speaks. One expressed disdain for their genetic research, which she saw as geared only toward prenatal testing and pregnancy termination options. The other lamented that their research isn't helping her kid, in contrast to the not-for-profit she runs that directly gives families the things they need. This same mother/professional had previously visited the ASD organization that hosted the behavioral therapy-based groups and advocated primarily ABA. However, she found that ABA was “making our son a robot” and teaching only instrumental skills. For this reason, she pursued instead the dynamic communication skill development of RDI. These examples highlight the common interests parents and neurodiversity organizations may share.
These results highlight the presence of neurodiversity where it may not be expected, both within groups that advocate approaches to which neurodiversity advocates might object and within a parent population that is often considered in opposition to the goals of neurodiversity through their interest in seeking such treatments and cures. Despite these tensions, this article argues that neurodiversity does influence parents in parent support groups, if subtly, in the ways described previously. Although this study did not intentionally seek out neurodiversity or prompt participants to discuss it, nor did any of the groups participating self-consciously advocate a neurodiversity approach, neurodiverse sentiments emerged.
Because of the preliminary nature of this research and field difficulties incurred in June when no support groups were able to meet, this article's picture of ASD is not nearly exhaustive enough for conclusive declarations. However, it identifies the important presence of neurodiversity among parents of children with ASD. Despite its limitations, this study brings to light some potential themes worthy of further study.
This study has been limited by the gender and ethnic homogeneity of the sample. Although several mothers commented on the role of their husbands in child-rearing, a discussion of this perspective is beyond the scope of this article. More research is needed to address these populations.
Another intriguing matter of demographics concerns the specific diagnosis of the children in question and how it impacts treatment-seeking behaviors and ideological attitudes of parents. ASD covers a broad range of functionality and severity, which may affect the acceptance of neurodiverse perspectives by both parents and individuals with ASD. As this relationship has been the subject of some debate and competing claims to “authorities” to speak for people with ASD, further research with a larger study must address variation in participants' diagnoses to clarify the degree to which neurodiversity can be associated with specific types of ASD.
This article should serve to alert the medical and parental community to neurodiversity's potential as a medical advocacy movement, as individuals with ASD are presenting valuable feedback on approaches, both through descriptions of individual experiences and developed theories on bioethics. It further demonstrates that parent and self-advocate organizations do not need to be in opposition, as both share common goals of improving services for people with ASD. Further attention is needed to address the absence of self-advocate voices in ASD research, policy development, and ASD-focused organizations. Moreover, if researchers can learn what narratives of neurodiversity parents are using and finding meaningful, this knowledge can be used to improve doctor–patient and provider–parent interactions. Neurodiversity can help develop new ways of introducing a diagnosis that give parents a different toolbox for coping. This knowledge can contribute to the goals of a person- and family-centered care that “recognizes parents as valued partners and decision-makers in the care of their child and establishes regular, ongoing communication with reciprocal exchange of information,” including “listening and acting upon parent concerns” (Waisman Center, 2008, p. 17) by familiarizing providers with an additional aspect of parental concerns and a different potential model with which to frame diagnoses and treatment. Whereas Baker (2006, p. 26) advocates “protecting and promoting programs addressing neurodiversity for teenagers and adults with autism while focusing on neurological disability for children with autism,” this study has shown that neurodiversity has a role for parents of children with a wide age range and could be incorporated into initiatives targeted to this group.
Finally, as these results stem from a broader study of ASD not focused on neurodiversity, they highlight a need for specific research directly into this approach in both online and offline communities. As a medical advocacy movement, neurodiversity is speaking, and the medical and advocacy community should be listening.
This manuscript is based on my senior honors thesis in Anthropology at Washington University in St. Louis. This research was funded by the Washington University Office of Undergraduate Research, and I am grateful for their support. I would also like to thank my senior honors thesis advisory committee at Washington University: Rebecca Lester, Bradley Stoner, and Paul Shattuck. Additionally, I give thanks to the many people at Case Western Reserve University who assisted me with the preparation of this article, particularly Anastasia Dimitropoulos, Eileen Anderson-Fye, and Lee Hoffer.
Editor-in-Charge: Dianne Ferguson