Marina Sarri
Release Date: April 5, 2022
For Kathy Wilcox, bullying began in fifth grade. The school seemed to blame her for teasing her classmates. "I remember the school counselor telling my parents to take it as constructive criticism and try to fit in better," she recalls.
Decades later, she once again faced guilt and rejection, this time as the mother of a child who looked down on fans, didn't know how to take turns, and had outbursts. He saw the disapproving looks from parents of other children in his son's preschool programs. "The smelly eyes I got from parents were unreal."
In those moments, Wilcox felt the stigma society attaches to the condition she and her son share: autism.
Many societies around the world view autism as a source of disappointment, anger or shame. According to some researchers, this social stigma can prevent families from seeking diagnosis and services for their children, fully participating in their communities, and enjoying the same quality of life as their neighbors. Stigma can affect an autistic person's ability to make friends, date, and get or keep a job. Some adults even bother to tell their doctors that they have autism.
Put simply, stigma affects public health.1
What exactly is stigma?
Eustacia Cutler's daughter was diagnosed with autism in 1950, several years after an American psychiatrist first described the condition. Cutler's husband wanted to institutionalize their daughter. Back then, many children with developmental disabilities were sent to these places far from their families and communities.
But Cutler insisted on keeping her daughter at home, where she received intensive care and an education. In 1960, Cutler attended a facility for severely disabled children and shuddered. She recalled the tangle of emotions over what she had seen: "As smart as I am, as charitable and awe-inspiring as life is, deep within my meaningless dreams lies a sweaty fear for these poor beings. Afraid that just seeing them could cause terrible contamination, I want them taken away as well. Out of sight."2
Three years later, sociologist Erving Goffman defined the concept of stigma somewhat similar to Cutler's description. He said the stigma came from the ancient Greeks, who literally branded someone to identify them as slaves, traitors or criminals. Stigma is a "deeply discrediting" trait that leaves the person who bears it "tainted" and "disrespected," he wrote. "By definition, we naturally believe that the person with stigma is not fully human." Others distance themselves from stigmatized people and their families or friends.3
The unique nature of the autism stigma
The shame and isolation experienced by people with autism and their families are similar to those of other groups whose differences characterize them. But autism has some unique characteristics that have prompted a near-perfect storm of rejection, some researchers say.
Autism can involve behaviors that society finds scary or uncomfortable. Some people with autism can hit, scream, or injure themselves. They may violate other people's privacy, ignore social rules, laugh, or make noise at the wrong time.
However, autistic people are like everyone else and talk a lot, which can make it difficult for them to understand or even accept that they have autism.4
"For many families, this makes the presence of runaway behavior or socially unexpected behavior even more stigmatizing because there is no clear indicator of why the child is behaving the way they do." Parents may worry that the behavior stems from poor parenting skills, laziness, lack of motivation, or other negative traits in the child or family,” said Inge-Marie Eigsti, Ph.D., who researches stigma in familiesWORK - WORK, the largest autism study.
The stigma of autism today
Much has changed since Goffman described stigma in the mid-1920s.aCentury. The United States has enacted laws that promote public education, fair treatment, and the inclusion of people with disabilities in society.
But parents and adults with autism continue to tell researchers they struggle under the weight of social disapproval, exclusion, stereotypes and judgment.
A large study of children on the spectrum found that about 75% often or sometimes stayed out of other children's activities. About 13 percent were physically bullied and 37 percent were teased at least sometimes.5For this study, researchers interviewed families in the Simons SimplexCollection, which, like SPARK, is an autism project of the Simons Foundation.
According to the study, a child's autistic traits and disruptive behaviors played the biggest role in how often people rejected the child. The more behaviors the child exhibited, the more isolated and excluded the family felt from friends, relatives, and social activities. According to the study, about 32% of families were excluded from social events and 40% isolated themselves from friends and family.5
It's not surprising that some families are isolated at times, when even a visit to the store can provoke criticism of their parents.
According to several mothers in the SPARK study, people sometimes feel compelled to give their parents unwanted advice. "A lot of people have said to me, 'Oh, he needs a good spanking,'" says Teisha Glover, a SPARK participant whose 10-year-old son has autism.
Other parents told investigators that their family and friends made comments like "some people shouldn't be parents."6
Stigma from the perspective of autistic adults
Of course, autistic adults also feel judged or worse. Some told researchers they could hide their autism from others to avoid being labeled, harassed, or ridiculed.7
Concerns about discrimination can affect medical care. "I am very cautious about sharing my [autism] diagnosis with my healthcare professionals because I fear it will affect my health care," one autistic adult told researchers.8
"People think that people on the spectrum are incapable of being independent, functioning adults and making good decisions," says Kathy Wilcox, an autistic SPARK participant. "I've dealt with that as a parent. I was confronted with that in my work."
For example, a colleague who knew of her diagnosis approached her and attempted to fill some of her roles, apparently believing that Wilcox's autism made her less capable. "There are things that I find harder at work because I don't recognize all these [social] cues, but there are things that I'm really, really good at," says Wilcox. She works with clients with autism with whom she has a connection.
She worries that other people might judge her parenting skills when they find out about her autism, even though it gives her a special insight into her autistic son.
And the effects of stigma can linger and affect people's self-image. Some autistic people and their families report self-stigmatization: They may believe society's message that they are somehow inferior to others. Autistic adults told the researchers that they try to hide their autism "so as not to be ashamed" or because "being me isn't good enough."9
Another research group is examining stigma in parents of children in SPARK to see if it contributes to differences in autism services between black families. An early finding is that Asian and white parents are more likely to internalize stigma and essentially blame themselves for their autistic children's struggles, says lead researcher Karla Rivera-Figueroa, Ph.D. Candidate in collaboration with Inge-Marie Eigsti, Ph.D.
Stigma and the neurodiversity movement
Autistic adults and parents have fueled efforts to eliminate stigma and promote neurodiversity, a term coined by autistic sociologist Judy Singer. Neurodiversity emphasizes the strengths of people with autism and the value society places on human differences. Many autistic people are proud of who they are.
Eustacia Cutler and the autistic daughter who kept her out of an institution so many decades ago have also played an important role in this effort. Cutler's daughter is Temple Grandin, the scientist, college professor, author, and self-advocate whose life became the subject of an HBO film.
A statement attributed to the mother and daughter states that autism makes Grandin "different, not less." This is a simple but revealing counterpoint to stigma.
Are you interested in joining SPARK? Here it iswhat you should know.
Photo author: fake pictures
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