Over 50 years ago, there were several theories in the area of social psychology put forth that I have been thinking more about lately. Like vinyl records, Polaroid cameras, and fanny packs, they can be worth pulling out and reexamining in order to help illuminate the complicated process of how individuals with disabilities absorb how the prevailing society views them.
Part of our self-esteem is directly influenced by what society considers our potential value to that society (Rousseau, 2002). We can go as far back as 1902 and find a reference to this in the work of the American sociologist Charles Horton Cooley, who wrote about the “looking glass self.” How we view ourselves must include others; in fact, he goes as far as to suggest that the society and the individual are so intertwined that they cannot be assessed as separate phenomena.
In this way, the macrosystem (how does society view and value who I am?) cannot be understood independently of the microsystem (how do I feel about myself?). What our society believes about neurodivergence and the value and the place that individuals with ASD have in our society has a direct link to the emotional life of that individual. What happens on a macro level counts, and there is immediate relevance here for those of us who identify as neurodivergent as well as those of us who love, support, and mentor individuals in this community.
In the same year that Lawrence of Arabia won the Oscar for best picture, Erving Goffman wrote about stigma theory (1963). An individual who possesses characteristics and traits that are not valued by society is vulnerable to becoming a devalued individual. When the prevailing societal view values that which is neurotypical, anything different in comparison is vulnerable to stigma.
For people on the spectrum, research shows higher incident rates for social exclusion and depression compared to neurotypical cohorts. Interestingly, Goffman evaluated the difference between traits that are devalued and observable (discredited) versus traits that are not immediately observable but would be stigmatized if revealed (discreditable). There is a link here for those people on the spectrum who feel pressured to camouflage behaviors that others might categorize as “autistic” in order for the individual to avoid being identified in some way, as Goffman would put it: to remain “discreditable” and therefore less likely to encounter stigma. However, many individuals experience this as emotionally exhausting and anxiety-producing and a way of being in the world that is inauthentic and alienating.
In 1968, the Beatles’ White Album dominated the Billboard 100, and the construct of a self-fulfilling prophecy was put forth. In this research, which would be considered unethical today, teachers were given false information identifying those students who were exceptional in the classroom, and by the end of the school year, those students ended up doing significantly better than their cohorts (1968). What someone believes about your potential can shape and reinforce how well you perform academically. Similarly, almost three decades later, American social psychologist Claude Steele’s research demonstrated how individuals perform below their ability when they are aware of negative biases about the group with which they identify. Known as the “stereotype threat,” negative biases on a macro level complicate and undermine one’s ability to reach their potential in the here and now. Although the researchers who studied self-fulfilling prophecy were in elementary school classrooms and Steele’s work focused on race and gender, they both are relevant to the vulnerabilities of the ASD community.
In 2012, there felt like a paradigm shift when British sociologist Damion Milton discussed the double empathy problem. Neurotypical and neurodivergent people are likely to have difficulty understanding each other’s perspective, with neither one being the correct, ideal, or preferred point of view according to society. The neurodivergent perspective is a difference, not a deficit. This shift supports a bidirectional lens to come into focus: yes, society clearly impacts the autistic individual, but this individual can have an impact on society as well.
We, as individuals, can speak authentically to society about who we are, and in this way, we can impact what we perceive to be misinformed or overtly malevolent about us on the macro level. Self-advocacy and public storytelling become important vehicles for people with disabilities to shape the zeitgeist. Clinically, creating therapeutically oriented groups for neurodivergent participants helps to build the foundation for finding one’s voice in order to be able to have this type of influence both individually and collectively. It is worth our taking the time to consider how we can empower the development and the broadcasting of the voices of people on the spectrum regardless of the role that we play in their lives because the potential impact reaches back to the values of the very society that we all exist within. As strong, as powerful, and as penetrating as societal views can be in terms of what a person with a disability might think of him/her/themselves, the opposite has also emerged to be true and is of critical value for us at this point in time.
Kenneth Mann, PsyD, is Director of Outpatient Programs for the Developmentally Disabled at Westchester Jewish Community Services. To learn about the wide range of programs Westchester Jewish Community Services offers to individuals with intellectual and developmental disabilities, please visit www.wjcs.com/services/jewish-programs/.
References
Goffman, E. (1963). Notes on the Management of Spoiled Identity. Simon and Schuster, N.Y.
Milton, Damion (2012). On the Ontological Status of Autism: the ‘double empathy problem’; Disability and Society (27), 6, pgs. 883-887. https://kar.kent.ac.uk/62639/
Rosenthal, R. & Jacobson, L. (1968). Pygmalion in the Classroom: Teacher Expectations and Pupils’ Intellectual Development. Holt, Rinehart & Winton.
Rousseau, Nathan (2002). Self, Symbols and Society: Classic Readings in Social Psychology. Rowman and Littlefield Publishers.
Turnock, A. & Langley, K. & Jones, C. (2022). Understanding Stigma in Autism: A Narrative Review and Theoretical Model. Autism Adulthood, Vol 4, No 1, 76-91. https://pmc.ncbi.nlm.nih.gov/articles/PMC8992913/
