The Need to Re-examine the “Face” of Autism
The “face of autism” — or the way we envision autism and autistic people — is directly related to the most prevalent stereotypes surrounding the disorder. The mental health field overall is antiquated in its view of autism. Unless mental health professionals have taken continuing education courses with a focus on autism spectrum disorder, how it presents in marginalized groups, and how intersectionality plays a role in how the disorder presents, they can easily misdiagnose or dismiss the possibility of autism completely during assessment.
Before the recent interest of the mental health field in understanding the nuances of autism spectrum disorder, it was common to refer to autism in women as female autism, or the now defunct label of Asperger’s. As research progresses, there has been an emphasis placed on if there are phenotypic differences between autistic men and autistic women. While there are some neurological findings that point to differences in processing social cues, the biological differences are unremarkable and do not support an assertion that there is a significant biological difference between male and female autists. There is growing interest in dissecting the social differences between autistic men and autistic women as the factors that tend to obscure earlier ASD diagnosis in women center on communication styles. This could be in large part to how women are socialized to be more amenable and less direct, therefore developing an ability to mask many of the social traits that stand out as obvious markers of autism in males.
Harmful Representation
There are also many harmful stereotypes that affect those that do fit the picture of what most people assume autism looks like. This can affect not only them but also trickles over into negatively affecting marginalized communities. For example: it is a common assumption that autistic people are incapable of empathy. When this is applied to a white male — the population most often associated with autism — it makes it acceptable to excuse a propensity for directness and socialize them to be ok with not learning nuance and how to communicate with people of differing neurotypes.
White men of all neurotypes are less likely than women and people of color to be tone policed or considered rude when being direct. Rather, it is seen as a sign of confidence and strength. This can be a positive side effect if it helps the autistic male to mask and fit in socially, however it can become a deficit if the autistic male also has additional social deficits or comorbidities, like anxiety. Being assumed to be confident and assertive can push the male autist to mask and expend energy fulfilling a role that is not authentic to who they are. Conversely, a soft-spoken, highly sensitive autistic male might have their autism misdiagnosed if they don’t present with the more commonly held stereotypes of autistic males.
When applied to women and people of color, this stereotype can lead to additional diagnoses and interventions (i.e. operant defiant disorder, borderline personality disorder, etc) as it is not socially acceptable for women or people of color to be direct. It is often interpreted as being rude, aggressive, and / or socially unaware. It is common for women and people of color to receive multiple diagnosis of varying personality and behavioral disorders without having autism suggested or considered as the link between the different symptoms and presentations (Price, 2022). According to the DSM-5, “autism spectrum disorder is diagnosed four times more often in males than in females. In [clinical] samples, females tend to be more likely to show accompanying intellectual disability, suggesting that girls without accompanying intellectual impairments or language delays may go unrecognized, perhaps because of subtler manifestation of social and communication difficulties.”
Research done on adults, women, and POC is markedly less than that done on white, cis-hetero, males — which has led to the false narrative that women, non-gender conforming people, and POC cannot be autistic or that the condition is rare in marginalized populations. Common symptoms / indicators of autism / ADHD present differently in non-males, adults, and POC. According to the American Pyschological Association, “cultural and socioeconomic factors may affect age at recognition or diagnosis; for example, in the United States, late or under diagnosis of autism spectrum disorder among African American children may occur.”
In the article “Biases, Barriers, and Possible Solutions: Steps Towards Addressing Autism Researchers Under-Engagement with Racially, Ethnically, and Socioeconomically Diverse Communities” researchers found that people of color as well as those from lower socioeconomic brackets are underrepresented in autism research, which has contributed to the disparities in healthcare and health outcomes (i.e. inaccurate or missed diagnosis). As a result, more people are seeking alternative solutions to help them understand how their brains work and begin accommodating themselves to be best positioned to flourish and stop floundering in their environments.
Self-Diagnosis and Self-Advocacy
Due to the outdated and incomplete understanding of autism in the mental health field, there has been an increase in people self-diagnosing as autistic. Self-diagnosis has largely been supported by the autistic community and early research shows a high rate of accuracy of those that have self-diagnosed. Women and BIPOC communities who face difficulties in access to quality healthcare or who are in an underserved area without access to diverse groups of culturally competent mental health professionals have found comfort and community among self-diagnosed autists. Those that have self-diagnosed and have later received a clinical assessment are shown to be over 90% accurate in their self-assessment. Researchers have attributed this to the natural propensity of autistic people to be self-reflective and logical.
The increase in self-diagnosis has also raised awareness for the need to self-advocate. Historically autism research and treatments have been conducted from an allistic perspective. This has directly contributed to the continuation of harmful therapies like ABA (applied behavior analysis) being considered the gold standard in autism therapy. ABA therapy essentially trains an autistic person with operant conditioning, much like how a dog is trained, to ignore their natural instincts so they can behave in a way that is more acceptable for allistic people. This therapy is harmful in that is does not address the cognitive and emotional mechanisms at work that are causing certain behaviors. A primary example is how ABA therapy treats stimming. Instead of understanding stimming is a self-regulatory behavior that helps an individual regulate themselves either mentally or physically, it is treated like a purely disruptive and undesirable behavior that must be put under control as to not disturb others.
By allowing autistic people to play a primary role in leading the research and suggesting alternative therapies and interventions, we will move closer to bridging the gap between the allistic view of autism and the lived experience of autistic people. Groups like ASAN — Autistic Self Advocacy Network — have emerged as leaders in promoting the need for more autistic representation in autism research and therapy. Their motto ‘nothing about us without us’ means that autistic people need to be involved whenever autism is discussed. When non-autistic people make decisions about autism without autistic input, those decisions more often than not have ableist undertones and can be harmful to the community. This makes it harder for us to get by in the world. Decisions about autism need to be made with autistic people. That way, we can make policies that help us live our lives and teach people how to be understanding and supportive of the autistic community.” (Autistic Self Advocacy Network 2022)
Shifting Our View on Autism and Disability
One of the major initiatives of the self-advocacy community is advocating for a shift in how we view autism and disability. We can begin to do this by viewing autism through the social model of disability versus the current medical model of disability. “Historically, disabled people have been the objects of study but not the purveyors of the knowledge base of disability” (Mander, 2022). Research has focused on the opinions of academic “experts” instead of capturing the lived experience and expertise of disabled people themselves. This has contributed to the persistence of viewing disability from the medical model — viewing the disability as something that needs to be changed through medical intervention. This view places the onus on the disabled person to find ways to adapt to a world that was not designed with them in mind, leading to interventions like ABA therapy.
The solution to this issue would be to shift our view of disability to the social model, which asserts that it is not the disability itself that causes disabled people to struggle. Rather, the environment and lack of accommodations is what disables people. Our society is widely inaccessible to a variety of people; however, we have been conditioned to consider it normal. Shopping malls are not designed to accommodate those with sensory issues; therefore, they remain largely inaccessible to those that struggle with loud ambient noise, lack of social distancing, bright lighting, convoluted signage, and a myriad of other sensory and social triggers that can lead to overstimulation and potentially a meltdown.
The social model of disability would shift the responsibility to the community to create a space of belonging for disabled people and would work to find ways to help them thrive and not just survive. The antithesis of ABA therapy would include education for both autistic and allistic people to better understand how each group communicates, what environmental factors influence their ability to function, and incorporate techniques that help tap into the benefits of each neurotype.
The Importance of the Allistic / Neurotypical Community Embracing Autists
Both neurodivergent and neurotypical people benefit from an increased understanding of how each group thinks and communicates. Using the social model of disability to shape our new perspective on autism research and treatment, we can identify several areas that would benefit from increased understanding and improved communication between autistic and allistic people.
Social — improvements in social acceptance and social adaptability arise when both neurotypical and neurodivergent groups understand how to effectively communicate and interact with each other. Allistic communication relies on intrinsic understanding of implied social cues. Autistic communication relies on clear, direct communication and rarely uses subtext. By understanding and embracing these differences, autistic and allistic people can adapt their style of communication when engaging with each other.
Emotional / Psychological — research shows there is potential for a decrease in distress, anxiety, depression, and suicidal ideations when neurodivergent people feel supported, integrated into the community, and encouraged to be their authentic selves. The stress of masking has contributed to increased levels of anxiety, depression, and suicide among autistic people.
Physical — many autistic people experience a host of physical symptoms related to their neurological disorders that can be exacerbated by the stress and distress of ostracization / othering. Authentically integrating neurodivergent people into society can improve / alleviate physical symptoms (pain associated with anxiety attacks, migraines, etc.)
As more research emerges about autism and how it presents in marginalized groups, we will continue to see a push for more input from the autistic community in how we are represented and what accommodations will help to improve not only our lives, but the lives of everyone around us. By shifting the focus from pathologizing autism and autistic behaviors to learning ways to integrate and take advantage of natural expressions of autistic people, we as a society stand to gain a lot. Autistic people will stand a better chance at authentically integrating into previously inaccessible spaces and allistic people can gain valuable skills in direct communication and integrating emotion and logic. Bridging the gap that was previously held open by the lack of autistic representation in autism research can change our society and help us evolve beyond the current divisions that keep us from seeing how much we have in common and how much we can learn and grow by better understanding the lived experiences of those with varying neurotypes.
References
American Psychiatric Association Publishing. (2022). Diagnostic and statistical manual of mental disorders: Dsm-5-Tr.
Autistic Self Advocacy Network. (2022, September 30). Retrieved October 1, 2022, from https://autisticadvocacy.org/
Elizabeth H. Morgan, Rylin Rodgers, John Tschida; Addressing the Intersectionality of Race and Disability to Improve Autism Care. Pediatrics March 2022; 149 (Supplement 4): e2020049437M. 10.1542/peds.2020–049437M
Eddie Chaplin, Jane McCarthy, & Debbie Spain. (2020). A Clinician’s Guide to Mental Health Conditions in Adults with Autism Spectrum Disorders : Assessment and Interventions. Jessica Kingsley Publishers.
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Jack et al. (2021). A neurogenetic analysis of female autism. Brain, 144(6), 1911–1926. https://doi.org/10.1093/brain/awab064
Mander, A. (2022). The Stories That Cripple Us: The Consequences of the Medical Model of Disability in the Legal Sphere. Victoria University of Wellington Law Review, 53(2), 337–362. https://doiorg.libproxy.gmercyu.edu/10.26686/vuwlr.v53i2.7765
Maye et al (2021). Biases, barriers, and possible solutions: Steps towards addressing autism researchers under-engagement with racially, ethnically, and socioeconomically diverse communities. Journal of Autism and Developmental Disorders, 52(9), 4206–4211. https://doi.org/10.1007/s10803-021-05250-y
Price, D. (2022). Unmasking autism: Discovering the new faces of Neurodiversity. New York, NY: Harmony Books.
Stroth et al. (2022). Phenotypic differences between female and male individuals with suspicion of autism spectrum disorder. Molecular Autism, 13(1), 1–15. https://doi.org/10.1186/s13229-022-00491-9
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