Reading through online autism forums will erase any doubt about stigmatization of those on the spectrum. Some autistic individuals say you just need to look at vaccination debates to get an idea of how many neurotypical people feel about autism. The fact that some people are more willing to risk the chance of their child being infected with a possibly lethal disease—rather than the small (or, according to some research, nonexistent) chance of “getting autism”—lets the autism community just how stigmatized the condition is.
Stigma. According to the Cambridge English Dictionary (Cambridge Advanced Learner’s Dictionary & Thesaurus) it is defined as: “A strong feeling of disapproval that most people in a society have about something, especially when this is unfair.” Unfair indeed, especially when autistic individuals mostly view autism as a fundamental part of who they are.
Stigma, the shameful history
As shameful as modern day stigmatizing is, it does not hold a candle to the dark past. The word stigma has Latin and Greek origins, its historical definition being, “mark, or brand.” The ancient Greek word stizein referred to being branded or tattooed with a sharp stick. Originally the word may have referred to a scar left by a hot iron (Stigma, Merriam-Webster.com dictionary).
Recorded history allows insights into the stigma attached to mental illness or differences from the time it was linked to sin, and a taint on the hereditary history of families. Stigma attached to mental disabilities may have intensified in the 19th-century with the separation of mental health treatment from mainstream healthcare (Shrivastava et al., 2012).
It is obvious from history—and art, if you have a look at some of the ancient works portraying asylums—that mental health patients or people who behave differently from what is considered “the norm” have always been ostracized by society.
Possible reasons and effects of stigma
A lack of education and awareness are probably the top reasons behind stigma. Those with mental disabilities, cognitive disorders and developmental disabilities are probably also stigmatized due to the nature and complications of their conditions. Certain symptoms like unexpected (in a neurotypical view), unpredictable behavior or violence could also lead to mental illness stigma (Arboleda-Florez, 2002).
Erving Goffman explored the concept of stigma in his book titled: Stigma: Notes On The Management Of Spoiled Identity (Goffman, 1963). According to Goffman a “spoiled identity” causes a person to experience stigma, and stigma describes the experience of living with an attribute that is discrediting. (Goffman, 1963).
While the reasons behind stigmatization are open to debate, the effects are clear to see. Reading about a spoiled identity, parents of autistic children would go to great lengths to protect their children from the stigma and prejudice of the neurotypical world.
The choice is daunting. Children with autism spectrum disorder often do well with early intervention and treatment for symptoms, but the child would need an autism diagnosis to get the appropriate therapy and support.
Unfortunately, once a child is diagnosed, the stigma society attaches to autism may follow and influence his/her life permanently. So parents fear getting a diagnosis…and they fear not getting one.
Autism research allows us to see what stigma does, not only to the child, but also to the parents and family of the child (Kinnear et al., 2016). The study by Kinnear et al. indicates that autism behaviors contribute to the challenges families experience when raising a child with autism, and such behaviors also contribute to stigma. Most importantly, the above mentioned study concludes that stigma plays a significant role in predicting how challenging life will be for the parents of children with autism.
Stigma and the invisible disability
Autism spectrum disorder is sometimes referred to as an “invisible disability”. The symptoms associated with autism, such as difficulties with social interaction, are not apparent when you see a child with autism. Parents speak of the difficulty of being in public with their autistic child when they are experiencing a meltdown or sensory overload. People, unaware of the child’s diagnosis, often make rude remarks about behavior and a lack of discipline.
Parents have (justifiably seeking empathy for their child) actually made public proclamations about their child’s condition in cases like these. Letting the world in on your child’s other ableness is, however, not always a way out of stigmatization. Once again, it becomes apparent that both speaking out and keeping quiet (about a child’s autism diagnosis) exposes parents to stigma.
Decreasing the stigma
Some in the autism community advocate for less stigmatizing terms; instead of referring to autism spectrum disorders, the more neutral “autism spectrum conditions” often find preference. Ideally the autism community should be consulted about preferred terms, as a considerable amount of offense and stigma results from labeling by neurotypical individuals. If someone speaks about their neurodevelopmental condition, it does have a very different ring to a neurodevelopmental disorder.
Beyond better terms, an increase in awareness and education may also lessen stigma when it comes to autism. A study (Gillespie-Lynch et al., 2020) suggests that a reduction in stigma (of conditions like autism) accompanies an understanding of others’ perspectives. To this end, the study found that in training sessions where individuals with specific diagnoses explained the reasons behind certain behavior, stigma was reduced—this was the case for all conditions reviewed in the study except for psychopathy.
A shared perspective
If, like described in the study (Gillespie-Lynch et al., 2020) a child with autism shared his/her perspective, or raised awareness of the challenges of some autism related symptoms, would anyone still be muttering about getting the child “under control”? Probably not, even when we merely scratch the surface on the daily challenges a child on the spectrum may face:
- Not making eye contact is not a sign of rudeness, to many autistic individuals maintaining eye gaze actually burns their eyes. To others, a lack of social communication skills may also lead to their eye contact difficulties. Others still, find eye contact distracting when they are trying to concentrate on what is being said in an overwhelming sensory environment
- If you’re not educated about autism, you may see stimming or meltdowns as strange or even frightening—many believe fear underlies all stigma. Maybe sentiments of strangeness will give way to empathy when the reasoning behind this behavior is explored. Stimming or self-stimulatory behavior and meltdowns are often the result of sensory overload or an inability to express frustration (people on the spectrum often face challenges in expressing emotions)
- From an autistic individual’s perspective, neurotypical behavior may not always make sense either. Consider that many sosial rules and standards are constructed by and for neurotypical people—research indicates that the autistic brain may be differently wired and motivated (Zhang et al., 2020)
Stop the stigma
When considering the many adjustments and challenges in the lives of families with a child with an autism spectrum disorder, it is almost unthinkable that stigma will be one of the biggest hurdles.
Keeping in mind the communication difficulties of many individuals on the spectrum, especially those that are nonverbal, we should consider the voice of high-functioning autistic people (previously diagnosed as asperger’s syndrome) a blessing.
Society can be taught about the experience of stigma from a neurodivergent point of view, and with that knowledge we can change discriminatory terms, behavior and expectations. “It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.” Coach Elaine Hall (Coach E).
References:
Arboleda-Flórez J. (2002). What causes stigma?. World psychiatry : official journal of the World Psychiatric Association (WPA), 1(1), 25–26.
Definition of stigma from the Cambridge Advanced Learner’s Dictionary & Thesaurus Cambridge University Press
Gillespie-Lynch, K., Daou, N., Obeid, R., Reardon, S., Khan, S., & Goldknopf, E. J. (2021). What Contributes to Stigma Towards Autistic University Students and Students with Other Diagnoses?. Journal of autism and developmental disorders, 51(2), 459–475. https://doi.org/10.1007/s10803-020-04556-7
Kinnear, Sydney & Link, Bruce & Ballan, Michelle & Fischbach, Ruth. (2016). Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives. Journal of Autism and Developmental Disorders. 46. 10.1007/s10803-015-2637-9.
Merriam-Webster. (n.d.). Stigma. In Merriam-Webster.com dictionary. Retrieved April 28, 2021, from https://www.merriam-webster.com/dictionary/stigma
Shrivastava A, Johnston M, Bureau Y. Stigma of mental illness-1: Clinical reflections. Mens Sana Monogr. 2012;10(1):70‐84. doi:10.4103/0973-1229.90181
Zhang, Z., Peng, P. & Zhang, D. Executive Function in High-Functioning Autism Spectrum Disorder: A Meta-analysis of fMRI Studies. J Autism Dev Disord 50, 4022–4038 (2020). https://doi.org/10.1007/s10803-020-04461-z
