Studies have found that the incidence rates of anxiety and depression in the autistic population are over 50%, more than double that of non-autistic people (Kirsch et al. 66). I aim to examine how the social construction of autism as a disorder, as opposed to a neurotype difference, sets the stage for stigmatization and institutionalization. Using the stress process model, these factors combine with a lack of social support to cause stress proliferation and can explain autistic people’s increased psychological distress. (Note: I use identity-first language in this paper due to an overwhelming preference for it in the autism community; Cage et al. 473).

Social Construction

To examine autism, we must first examine its definition and how that definition has been socially constructed by the psychiatric field. The current criteria for autism are a) Persistent deficits in social communication and social interaction across multiple contexts, and b) Restricted, repetitive patterns of behavior, interests, or activities, with the DSM-V-TR adding that “current symptoms may be masked by compensatory mechanisms” (APA 57–59). These deficits in social communication refer to “social-emotional reciprocity” (atypical approaches to social interaction and failures to initiate or respond); “nonverbal communicative behaviors” (displaying appropriate eye contact and body language); and “developing, maintaining and understanding relationships” (APA 57). These criteria reflect a judgment of how well someone’s communication style matches the societal norm, rather than an inherent deficit. Furthermore, research suggests that autistic people do not face social and communication issues when interacting with each other (Milton 884). The characterization of “Highly restricted, fixated interests that are abnormal in intensity or focus” (APA 58) also relies on a societal judgment that having less intense interests is normal.

These criteria point to autism being a socially constructed disorder. Social constructionism views normality and abnormality as cultural definitions applied to behavior and argues that deviance has no objective definition outside of the cultural rules that define it (Horwitz 48). Some sociologists go further and argue that there is a fundamental conflict in using medical remedies to treat a social problem whose definition is so dependent on the diagnoser’s worldview (Szasz 113). Under this view, society only pathologizes autism because autistic people are a minority whose behavior is culturally deemed abnormal.

There are, however, aspects of autism which cannot be explained by either social constructionism or a social model of disability. Sensory hypersensitivity (“adverse response to specific sounds or textures”) that can result in meltdowns is inherently disabling, as is “extreme distress at small changes [and] difficulties with transitions” (APA 58). Executive dysfunction, while not explicitly acknowledged in the DSM, is also a common trait of autism (O’Hearn et al. 1110) that causes difficulties in task switching and initiation. However, these traits are not as salient as autistic people’s atypical communication and social difficulties, which is the focus of most psychology research as well as most negative stereotypes and stigma towards autism.

Of course, the definition of autism has also changed over time, with the fifth edition of the DSM consolidating autism, Asperger’s Syndrome, and Pervasive Developmental Disorder - Not Otherwise Specified into one spectrum, due to the large degree of overlap between their signs, symptoms, and treatment (King et al. 107). The task force for each edition of the DSM engages in a conscious social construction of disorders (Whooley 94) that is in line with their overall goals. For instance, they reclassified autism as a developmental rather than emotional disorder (Liu et al. 1393), as part of a larger shift in the field from a psychodynamic perspective to a medical one (Horwitz 45). Some might see this expansion of autism criteria as medicalization, a process whereby previously non-medical problems are defined and treated as medical, and diagnostic criteria expand (Conrad & Slodden 62). Medicalization theory points to pathologization, or medically defining normality and ignoring social contexts, as inherent problems with the DSM. It also considers the influence of pharmaceutical companies, consumers, and advocacy groups on how disorders are defined, not just psychiatrists.

Pharmaceutical companies have not found a medication that changes autism symptoms, so autism diagnosis and treatment have not been affected in the same way that ADHD medication and antidepressant usage has been driven by the drug industry’s financial interests (Schwarz; Horwitz 50). However, despite previous failures, many autism drug trials are currently ongoing (McCarty), meaning that pharmaceutical financial interests may become a larger factor in autism medicalization in the future.

The influence of consumers and advocacy groups must then be delineated between parents of autistic children and autistic self-advocates, as their goals often diverge. Parent-run groups have historically sought a cure and treatments to allow their children to better integrate into society, while autism self-advocates typically criticize this position as prioritizing an idea of normality over people’s quality of life. In terms of diagnoses, parents can be reluctant to use the term autism or disclose the child’s diagnosis to them, wanting their child to feel normal and appear normal to others (Almog et al. 4066), whereas autistic people typically see diagnoses as a means for self-discovery and live happier lives when they know about their autism from a young age (Oredipe et al. 205).

Beyond DSM criteria, securing a diagnosis requires recognition of symptoms and access

to knowledgeable doctors (Liu et al. 1398). Research shows that the social diffusion of information about autism within social clusters (and now the internet) drives the rise in diagnosis, not changes in actual incidence rates. This is consistent with overall trends in mental health, where treatment and diagnoses have increased over the last 20 years while depressive symptoms stayed constant (Johnson 54). Clinical providers’ racial and gender biases also heavily impact which diagnoses and treatments they choose to provide, despite the standardized symptom criteria (Loring and Powell 12; Link and Milcarek 288).

Labeling & Stigma

Autism is a label that defines someone as abnormal, created in large part due to social construction. With the label comes stigma, which links discrediting stereotypes to an attribute (Management of Spoiled Identity 3) and results in status loss, discrimination, and a sense of separation from non-stigmatized groups (Link & Phelan 538). Both the struggles and normal acts of stigmatized groups are viewed differently, and they are held to strict standards that may not even apply to “normals” (Management of Spoiled Identity 6). Autism is a stigmatized identity, in part due to infantilizing and dehumanizing medical narratives that portray autistic people as incapable of personhood and community and claim that autistic individuals lack epistemic authority to contribute to knowledge on their disorder (Botha et al. 428). Only two of the ten most frequent autism stereotypes are positive: “high-intelligence” and “special abilities”, which are more associated with media portrayals of savant syndrome than an average autistic person. Qualitative interviews reveal that autistic people generally view autism as a value-neutral part of their identity, but must continually manage external stigma from non-autistic people (Botha et al., 444).

Stigmatized groups face the pressure to deflect stigma by distancing themselves and

hiding their label (Link & Phelan 537). Autistic people tend to conceal their identity, and

mask/camouflage their traits to avoid negative judgments based on autism stereotypes or invalidation of their identity if they do not fit a stereotypical image of autism (Botha et al. 440), which unfortunately causes worse depression, anxiety, and stress (Cage et al. 479). Research has found that having close ties to someone with a certain condition can decrease stigmatization of that condition (Perry et al. 439), but the likelihood of rejecting stigmatized people is highest in closer spheres of interaction like friendship (Pescosolido 13). Combined with people’s reluctance to disclose their autism, this avenue of destigmatization is limited. Reducing stigma by portraying autism as treatable (McGinty et al. 82) is also not an option, because there is no cure.

Institutionalization

Historically, institutionalizing severely autistic children was the norm, often under 24-hour restraint if they showed self-injurious behavior (Leaf et al. 2840). Institutionalization involves a stripping of the self and dehumanization (“The Moral Career” 123), where even normal behaviors are interpreted as abnormal due to one’s status as a patient (Rosenhan 257). Applied Behavioral Analysis (ABA) interventions have replaced asylums and aim to teach behavior that allows autistic people to function in society. However, they face criticism for making neurotypical behavior a goal, which self-advocates see as continuing to dehumanize autism (Leaf et al. 2845).

Prisons, considered by some to be the new asylums, have much higher autism prevalence

rates than the general population (Young et al. 112), in line with other lifetime psychiatric disorders (Schnittker et al. 455). While there is a lack of quantitative research on autistic people’s interactions with law enforcement, autistic people of color face an increased threat of racial injustices in the criminal justice system, and the associated consequences of psychological and physiological stress (Alang et al. 8; Boen 299).

The Stress Process Model

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The stress process framework provides a means for understanding why autistic individuals develop anxiety disorders and depression at such high rates. Pearlin and Bierman’s  model posits that stressors, resources, and social statuses are all interrelated factors that impact mental health outcomes, and that stress proliferation can explain people’s resulting distress (326). Firstly, primary stressors can be divided into life events (traumatic or other deeply impactful events) and chronic strains (persistent stressors associated with social roles), both of which are relevant to the struggles that autistic people face. 

From childhood, autistic children are more likely to be bullied, with prevalence rate estimates ranging from 60-94%. One large review found that within a one-month period, 44-77% of autistic children were bullied, as compared to 2-17% of typically developing children (Hoover 294). Autistic adults also face more employment difficulties, financial hardship, and domestic abuse than non-autistic adults (Griffiths et al. 1521), and the prevalence of sexual violence against autistic women may be 2-3 times higher than against women in the general population (Cazalis et al. 13). These primary stressors lead to a variety of secondary stressors, and autistic people furthermore face anticipatory stressors and discrimination stress due to their stigmatized status (Pearlin and Bierman 329).

When it comes to moderating resources, coping, social support, and mastery can mitigate

the effects of stress (Pearlin and Bierman, 330). However, social support for autistic people, as divided into similar others and significant others (Thoits 152), is often harder to find. Similar others can validate feelings, provide advice, and be role models, but a distinct lack of openly autistic people due to stigmatization and negative stereotypes means that it is difficult to find positive mentors. Social difficulties may also narrow autistic people’s pool of significant others. However, it is important to acknowledge that this research is based on people’s self-reported perceptions of social support, which has a weak relation to actual received support (Thoits 150). Thus, autistic people may believe that they receive more or less social support than is actually offered, further adding variability (Turner and Turner, 2013). Contrary to popular opinion, autistic people may desire social connection, but society attributes behaviors caused by a lack of eye contact and motor stereotypies to a lack of interest in others (Jaswal and Akhtar 11). The problem is that seeking social connection and support can become another psychological hurdle as social stressors exceed people’s capacity to adapt (Pearlin and Bierman 332). Deliberately masking autistic traits for the purpose of social interaction, as discussed earlier, is detrimental to mental health and increases distress and depressive symptoms (Cage et al. 479). Anxiety itself further undermines a sense of mastery over their life, diminishing moderating resources and exacerbating distress when a new stressor occurs.

In conclusion, the stress process for autistic people is driven not only by social difficulties and traumatic events, but by external stigma towards autism and a resulting lack of social support. These factors are difficult to disentangle, speaking to the need for viewing stressors and resources as interrelated chains in the proliferation of stress. The stress process model provides a great framework to examine psychological distress in autistic people, and an explanation for why anxiety and depression so frequently co-occur with autism.