Date Published: April 5, 2022
For Kathy Wilcox, the bullying began in fifth grade. The school seemed to blame her for her classmates’ taunts. “I remember the guidance counselor telling my parents that I should take it as constructive criticism and try to fit in better,” she recalls.
Decades later, she faced blame and rejection again, this time as the mother of a small boy who stared at fans, did not understand taking turns, and had outbursts. She saw the disapproving looks from the parents of other children in her son’s preschool programs. “The stink eyes I got from the parents were unreal.”
In those moments, Wilcox felt the stigma that society attaches to the condition that both she and her son share: autism.
Around the world, many societies view autism as a source of disappointment, annoyance, or shame. According to some researchers, this social stigma may keep families from seeking a diagnosis and services for their children, from participating fully in their communities, and from enjoying the same quality of life as their neighbors. Stigma may affect an autistic person’s ability to make friends, date, and get or keep a job. Some adults even worry about telling their doctors that they have autism.
Simply put, stigma influences public health.1
What is Stigma, Exactly?
Eustacia Cutler’s daughter was diagnosed with autism in 1950, a few years after an American psychiatrist first described the condition. Cutler’s husband wanted to put their daughter in an institution. At that time, many children with developmental disabilities were sent to such places, away from their families and communities.
But Cutler insisted on keeping her daughter at home, where she received intensive therapy and schooling. In 1960, Cutler toured an institution for children with severe disabilities, and she flinched. She recalled the tangle of emotions over what she had seen: “However intelligent I think I am, however charitable and reverent of life, lodged deep in my mindless dreams is a clammy anxiety over these poor beings. Fearing the very sight of them may cause some horrid contamination, I, too, want them shipped off. Out of sight.”2
Three years later, sociologist Erving Goffman defined the concept of stigma, in a way somewhat similar to Cutler’s description. He said that stigma originated with the ancient Greeks, who would literally brand someone to identify him as a slave, traitor, or criminal. Stigma is a “deeply discrediting” feature that makes the person who has it “tainted” and “discounted,” he wrote. “By definition, of course, we believe the person with a stigma is not quite human.” Others distance themselves from stigmatized people – and their families or friends.3
The Unique Nature of Autism Stigma
The shame and isolation experienced by people with autism and their families is similar to that experienced by other groups whose differences set them apart. But autism has some unique characteristics that have created an almost perfect storm for rejection, some researchers say.
Autism may involve behaviors that society finds to be frightening or uncomfortable. Some people with autism may hit, yell, or hurt themselves. They may violate other people’s personal space, ignore social rules, or laugh or make noise at the wrong time.
Yet autistic people look just like everyone else and they often speak, which may make it harder for others to understand or even accept that they have autism.4
“For many families, that makes the presence of out of control behavior or socially unexpected behavior that much more stigmatizing, because there’s not a clear indicator of why the child is behaving like that. Parents may worry that the behavior is being attributed to bad parenting skills, laziness, a lack of motivation, or other negative qualities in the child or in the family,” said Inge-Marie Eigsti, Ph.D., who is researching stigma in families in SPARK, the largest study of autism.
Autism Stigma Today
Much has changed since Goffman described stigma in the mid-20th century. The United States has adopted laws promoting the public education, fair treatment, and inclusion of people who have disabilities in society.
But parents and autistic adults continue to tell researchers that they struggle under the weight of social disapproval, exclusion, stereotyping, and judgment.
A large study of children on the spectrum found that about 75 percent were left out of activities by other kids often or sometimes. About 13 percent were physically bullied, and 37 percent were teased, at least some of the time.5 For that study, researcherssurveyed families in the Simons Simplex Collection, which, like SPARK, is an autism project of the Simons Foundation.
A child’s autistic traits and disruptive behaviors played the largest role in how often people rejected the child, according to the study. The more behaviors the child had, the more isolated and excluded the family felt from friends, relatives, and social activities. About 32 percent of the families were excluded from social events, and 40 percent isolated themselves from friends and family, the study said.5
It’s not surprising that some families would isolate themselves at times, when even a trip to the store may result in criticism of their parenting.
People sometimes feel compelled to provide unwelcome parenting advice, according to several mothers in the SPARK study. “So many people have told me, ‘Oh, he needs a good spanking,'” says Teisha Glover, a SPARK participant whose 10-year-old son has autism.
Other parents told researchers that their relatives and friends have made comments such as, “some people shouldn’t be parents.”6
Stigma from the Perspective of Autistic Adults
Of course, autistic adults also feel judged, or worse. Some have told researchers that they may hide their autism from others to keep from being stereotyped, harassed, or mocked.7
Concerns about discrimination can interfere with medical care. “I am very careful when it comes to disclosing my [autism] diagnosis to my healthcare providers, because I fear it’s gonna affect my healthcare,” an autistic adult told researchers.8
“People think that people on the spectrum aren’t capable of being functional independent adults and making good decisions,” says Kathy Wilcox, an autistic participant in SPARK. “I have faced that as a parent. I have faced that in my job.”
For example, a co-worker who knew about her diagnosis talked down to her and tried to take on some of her duties, apparently on the assumption that Wilcox’s autism made her less able. “There are things that are harder for me at work because I don’t pick up on all these [social] cues, but there are things I’m very, very good at,” Wilcox says. She works with clients who have autism, for whom she shares a connection.
She worries that others will judge her parenting skills if they know about her autism, even though it gives her special insight into her autistic son.
And the effects of stigma can linger, affecting the image people have of themselves. Some autistic people and their families report self-stigma: they may believe society’s message that they are somehow less worthy than others. Autistic adults have told researchers that they try to hide their autism “to avoid feeling ashamed” or because “being me isn’t good enough.”9
A different research group is studying stigma in parents of children in SPARK, to see whether it contributes to disparities in autism services among families of color. One early finding is that Asian and white parents are more likely to internalize stigma, essentially blaming themselves for their autistic child’s struggles, says researcher Karla Rivera-Figueroa, a Ph.D. candidate working with Inge-Marie Eigsti, Ph.D.
Stigma and the Neurodiversity Movement
Autistic adults, and parents, have led efforts to remove stigma and promote neurodiversity, a term coined by an autistic sociologist, Judy Singer. Neurodiversity emphasizes the strengths of people with autism and the value that society receives from human differences. Many autistic people feel pride in who they are.
As for Eustacia Cutler, and the autistic daughter she kept out of an institution so many decades ago, they played a role in this effort, too. Cutler’s daughter is Temple Grandin, the scientist, college professor, author, and self-advocate whose life became the subject of an HBO movie.
One statement attributed to both mother and daughter is that autism makes Grandin “different, not less.” That is a simple, but eloquent, counterpoint to stigma.
Interested in joining SPARK? Here’s what you should know.
Photo credit: Getty Images
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- Cutler E. A Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story. Arlington, TX: Future Horizons (2004)
- Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster Inc. (1963)
- Moyson T. and H. Roeyers Except. Child. 78, 41-55 (2011) Abstract
- Kinnear S.H. et al. J. Autism Dev. Disord. 46, 942-953 (2016) PubMed
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- Cage E. and Z. Troxell-Whitman J. Autism Dev. Disord. 49, 1899-1911 (2019) PubMed