The Stigma of Autism: When All Eyes Are Upon You
What parent of a child with autism hasn't had one of those moments in public? Your child is screaming, spinning or making noises, and you're on the receiving end of disapproving stares or outright hostility from The Annoyed. "Control your child," The Annoyed says coldly. Maybe he assumes your child lacks discipline; maybe he recognizes the disability but blames you for subjecting him to such behavior. The Annoyed can be a stranger, an acquaintance or cousin Pat.
At that moment, you feel the stigma that societies around the globe attach to autism. In different ways and to different degrees, people in many countries view autism as a source of disappointment, annoyance, shame or worse. According to some researchers, 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. Simply put, stigma influences public health.1
Stigma is born of culture, so it may look different depending on whether you are living in South Korea, Australia, the West Bank, Japan or the United States. Pope Francis recently told Roman Catholics worldwide to help with "breaking down the isolation and, in many cases, the stigma burdening people with autism spectrum disorders, and just as often their families."2
The shame and isolation experienced by people with autism and their families is similar to that experienced by others whose differences set them apart. But autism has some unique characteristics that have created an almost perfect storm for shame and rejection.
In more serious forms, autism often involves "extremely disruptive antisocial behavior," wrote Australian sociologist David E. Gray.3 Some with autism may flick their fingers repeatedly, hit, scream, or hurt themselves. They may fail to make eye contact or speak. They may violate other people's personal space, causing fear and discomfort. Yet they look just like everyone else, making their behavior doubly suspicious to the uninformed.
"It is this combination of pervasive disability and apparent physical normality that gives the stigma experienced by families with autistic children its unique quality," Mr. Gray wrote in 1993.3
People with autism alone usually do not have identifiable facial characteristics, such as in Down Syndrome, nor do they typically use devices such as wheelchairs or canes to alert others to the presence of a disability. As a result, their unusual behavior may be mistaken for terrible parenting, a dangerous lack of self-control, or mental illness. That may increase the burden of stigma. One Israeli study, for example, found that caregivers (mostly parents) of people with autism reported feeling more stigmatized than caregivers of people with physical or intellectual disabilities.4 In another, new study, almost all of the American and Canadian parents and scientists interviewed said they believe people with autism face stigma, according to an author, Ruth L. Fischbach PhD.
Autism: The Early Days
Eustacia Cutler's daughter was diagnosed with autism less than a decade after it was first described by a psychiatrist in 1943. Her husband, thinking his strange and silent toddler either "retarded" or "insane," wanted to put the little girl in an institution. That may seem surprising today, but in the 1950s, many American children with developmental disabilities were sent to such places, away from their families and communities.
Ms. Cutler insisted on keeping her daughter at home, where she received intensive therapy and schooling. In 1960, Ms. Cutler toured an institution for children with severe disabilities and deformities, and this time even 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."5
Three years later, the sociologist Erving Goffman would define the concept of stigma, in a way somewhat similar to Ms. Cutler's description. He noted that stigma originated with the ancient Greeks, who would, quite literally, brand someone to identify him as a slave, traitor or criminal.6 Stigma is a "deeply discrediting" feature that makes the person who has it "tainted" and "discounted," he wrote in Stigma: Notes on the Management of Spoiled Identity. "By definition, of course, we believe the person with a stigma is not quite human." So-called normal people distance themselves from the stigmatized – and those associated with them.6 The stigma of a disability could spread to the person's family, almost like an infection.
That was 50 years ago. What is stigma like in the 21st Century?
It depends on where you happen to be. A Palestinian mother on the West Bank described the family reaction to her son with autism: "Some of the people from my family were understanding. Others were not. They were telling us to get rid of him. To get rid of him! [They said], 'Why are you taking care of him?' That is how some people think. When he got sick, they kept telling us, 'Why are you even spending money on him?'"7
Another parent on the West Bank described the public reaction: "It is very difficult to walk with your disabled child in the street. Everyone leaves what they are looking at or doing and starts watching your kid. You feel like you are the star of a puppet show."7
In a 2011 study, a research team that included Drs. Young Shin Kim and Roy R. Grinker found several surprising things about autism and stigma in South Korea. First, the autism rate was 2.6 percent, the highest reported from any country. But even more puzzling was the fact that two-thirds of the children with ASD were undiagnosed and untreated.8
The researchers noted that stigma may keep families from pursuing autism diagnoses and treatment. "…Koreans consider autism to be a stigmatizing hereditary disorder; autism (chap'ae) impugns the child's lineage on both sides and threatens the marriage prospects of unaffected relatives. As a result, autism is often untreated, misdiagnosed as attachment disorder, or unreported in records."8
Attachment disorder is a social interaction problem caused by neglect in early childhood. Many Korean mothers seem to prefer the attachment disorder diagnosis, even though it places blame for their children's condition squarely on them, according to a research review by Dr. Grinker and others.9 Many Koreans believe attachment disorder to be more treatable than autism and, unlike autism, it does not stigmatize the entire family, according to that review.9
Regardless of what it's called, any kind of "disorder" may seem stigmatizing.
The Stranger: What it Means to be Different
This is a society where you are called 'stranger' if you are a little different from the others.
Schools in Japan began offering special education for students with developmental disabilities in 2007, according to a study in Social Work. Doing so was fraught because of the premium Japanese culture places on fitting into society and interdependence. Many parents and teachers believed labeling a child as different and needing special education could disrupt his relationship with other children, exposing him to social harm and henken (prejudice or stigma). "In summarizing Japanese cultural responses to 'difference,' one teacher remarked, 'This is a society where you are called 'stranger' if you are a little different from the others.'"10
The study described how teachers at one Japanese school engaged in a very elaborate dance to get parents to accept extra help for students with learning disabilities. A special educator slowly and gently worked to cultivate relationships with parents, who were reportedly fearful of henken. One mother did not want the special educator to speak to her in the hallway, lest other parents deduce that her child was different. Another mother noted the particular stigma attached to autism: "If there is an incident, we often hear [the media] say something like 'the darkness of kokoro'" (heart and mind) with autism.10
Labeling: Us vs. Them
Parents in other countries also struggle with whether to have their children labeled with an autism spectrum disorder (ASD). In Great Britain, researchers Ginny Russell and Brahm Norwich studied parents who accepted an ASD diagnosis for their children, along with parents who deliberately avoided a diagnosis. The parents in the latter group had been told by professionals that their child might have ASD, but they resisted having their children assessed and "labeled."11
The British study noted that many parents face trade-offs when having their child diagnosed. The diagnosis may invite stigma, prejudice and the loss of a parent's feeling of "normalcy." On the other hand, a diagnosis can open doors to therapies and educational services that may improve the child's symptoms and quality of life.
The avoiders – the British parents who didn't want their child diagnosed – often cited stigma and rejection as a major concern, not unlike their Japanese counterparts. One parent explained, "When you apply perhaps a medical label it all seems to be, to the outside world it seems to be a lot more serious, a lot more scary… they start thinking, oh well, maybe I don't want my child to play with him." Some worried that society was labeling as "abnormal" traits that were merely eccentric or different.11
Reframing Autism and Stigma
The parents of diagnosed children generally worked to reduce the stigma of ASD, according to Russell and Norwich. When their child was behaving "inappropriately," for example, some would explain that he has autism or that his brain was wired differently. They encouraged other parents to seek assessments for autism. Some also focused on their child's strengths. One parent described how she grew to marvel at the way in which children on the spectrum think, and "how fantastic they are."
Efforts to de-stigmatize disability have led to changes in the language. The phrase "special needs" takes the focus away from the "deficits" of a disability.11 British autism expert Simon Baron-Cohen, among others, wants to replace autism spectrum disorder with autism spectrum condition because condition is "less stigmatizing." It also "reflects that these individuals have not only disabilities which require a medical diagnosis, but also areas of cognitive strength," they pointed out.12
Oftentimes, those seeking to de-stigmatize a group will focus on how similar they are to "normals," to use a phrase from Dr. Goffman. Including children with special needs in "regular" classrooms may foster the kind of interactions that reduce stigma. In Martha's Vineyard circa 1900, deaf residents apparently experienced no stigma or isolation from hearing residents. A form of hereditary deafness was so common on that Massachusetts island that hearing residents routinely learned and used sign language with their deaf neighbors, according to an article in Social Science & Medicine.13
In the case of Asperger's Syndrome, a high-functioning form of autism, that de-stigmatization effort may also involve pointing out the advantages of having Asperger's. For example, some advocates point to brilliant historical figures such as Albert Einstein, whom, they speculate, may have had traits of Asperger's. (Asperger's was not identified as a psychiatric diagnosis until 1994.)
As a result, Asperger's has become associated with intelligence or technical prowess in some quarters. In other places, it still carries a stigma, but less than that attached to classic autism. A 2013 study of more than 500 health care providers and educators in Australia found that they believed an autism diagnosis to be more stigmatizing than Asperger's. Half of them opposed plans to combine Asperger's and autism into a single diagnosis of autism spectrum disorder; some cited increased stigma for people with Asperger's as a reason.14
Autism as a natural variation
I am a Proud Autistic. – Tito Mukhopadhyay15
Some adults with ASD have led a neurodiversity movement that celebrates autism as a natural variation of the human condition and opposes efforts to cure it. These advocates prefer supports and accommodations for people with ASD, rather than treatments that would erase harmless autistic behaviors.16
As professor Ralph J. Savarese explained in Disability Studies Quarterly, neurodiversity means "a willingness to make room for difference as difference (not pathology)."17
Some neurodiversity advocates with milder forms of autism have garnered media attention, but what about those with severe autism? They appear in the mainstream media most often when they have been given the opportunity to demonstrate extraordinary skills – or to challenge preconceptions of autism.
The poet Tito Mukhopadhyay was diagnosed with severe, nonverbal autism in India in the 1990s. His mother, Soma Mukhopadhyay, taught him to communicate through writing, by using her own style of teaching. Mother and son have been the subject of television shows, articles and blogs. The author of The Mind Tree and other books, Mr. Mukhopadhyay looks forward to a world beyond stigma. He writes: "One day I dream that we can grow in a matured society where nobody would be 'normal or abnormal' but just human beings, accepting any other human being –ready to grow together."18
People like Mr. Mukhopadhyay challenge or discredit the old view of autism as a "devastating global disorder that robs people with autism of their very humanity," Professor Savarese wrote in Reasonable People.19
Different, not less
As for Eustacia Cutler, six decades after her daughter's diagnosis, she travels around the United States speaking to parents at autism conferences. She is often accompanied by her now-famous daughter: Temple Grandin, the scientist, college professor, author and advocate, her life the subject of the eponymous HBO movie. One statement attributed to both mother (in the movie) and daughter is that autism makes Dr. Grandin "different, not less." That is a simple, but eloquent, counterpoint to stigma.
- Families Face Autism Stigma, Isolation reports on a study of stigma among families in the Simons Simplex Collection (SSC) autism research project.
- For information on neurodiversity, see IAN's article, The 'C' Word in Autism: Common Cause in Spite of Conflicting Perspectives.
- IAN Blog: Expectations Unmet: Why Are We So Quick to Judge?
- Take our nonscientific poll: Have you felt stigmatized because of autism?
- Webinar with Dr. Fischbach on results of a study on stigma and other topics. Her team interviewed parents and scientists involved in the SSC.
- Link, B.G. & Phelan, J.C. (2006) Stigma and its public health implications. Lancet. 2006 Feb 11;367(9509):528-9. Abstract.
- Pope: Break down isolation, stigma of autism. (2014, Nov. 22). Retrieved from http://en.radiovaticana.va/news/2014/11/22/pope_break_down_isolation,_stigma_of_autism/1112005
- Gray, D. E. (1993). Perceptions of stigma: the parents of autistic children. Sociology of Health & Illness, 15: 102–120. Abstract.
- Werner, S. & Shulman, C. Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. (2013). Res Dev Disabil. 2013 Nov;34(11):4103-14. Abstract.
- Cutler, E. (2004) A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story. Future Horizons.
- Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster Inc.
- Dababnah, S. & Parish, S.L. (2013) “At a moment, you could collapse”: Raising children with autism in the West Bank. Children and Youth Services Review 35 (2013) 1670–1678. Abstract.
- Kim, Y.S., Leventhal, B.L., Koh, Y-J, Fombonne, E., Laska, E., Lim, E-C, Cheon, K-A, Kim, S-J, Kim, Y-K, Lee, H., Song, D-H & Grinker, R.R. (2011) Prevalence of Autism Spectrum Disorders in a Total Population Sample. Am J Psychiatry. 2011 Sep;168(9):904-12. Abstract.
- Kang-Yi, C.D., Grinker, R.R. & Mandell, D.S. (2013) Korean Culture and Autism Spectrum Disorders. J Autism Dev Disord. 2013 Mar;43(3):503-20. Abstract.
- Kayama, M. & Haight, W. (2014) Disability and Stigma: How Japanese Educators Help Parents Accept Their Children's Differences. Soc Work. 2014 Jan;59(1):24-33. Abstract.
- Russell, G. & Norwich, B. (2012) Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders. Clin Child Psychol Psychiatry. 2012 Apr;17(2):229-45. Abstract.
- Baron-Cohen, S., Scott, F.J., Allison, C., Williams, J., Bolton, P., Matthews, F.E. & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population study. Br J Psychiatry. 2009 Jun;194(6):500-9. Abstract.
- Groce, N.E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard. Cambridge (MA): Harvard University Press, as recounted by Green, S.E. (2003) “What do you mean ‘what's wrong with her?'”: stigma and the lives of families of children with disabilities. Soc Sci Med. 2003 Oct;57(8):1361-74. Abstract.
- Kite, D.M., Gullifer, J. & Tyson, G.A. (2013) Views on the Diagnostic Labels of Autism and Asperger's Disorder and the Proposed Changes in the DSM. J Autism Dev Disord. 2013 Jul;43(7):1692-700. Abstract.
- As quoted in Savarese, E.M. & Savarese, R.J. (2010). "The Superior Half of Speaking": An Introduction. Disabil Stud Q. 2010;30(1). View article.
- Kapp, S.K., Gillespie-Lynch, K., Sherman, L.E. & Hutman, T. (2013) Deficit, Difference, or Both? Autism and Neurodiversity. Dev Psychol. 2013 Jan;49(1):59-71. Abstract.
- Savarese, R.J. (2010) Parent & Sibling Roundtable: Neurodiversity and Caregiving. Disability Studies Quarterly. Vol 30, No 1 (2010). View article.
- Mukhopadhyay, T.R. (2003) The mind tree: A miraculous child breaks the silence of autism. New York: Arcade Publishing.
- Savarese, R.J. (2007) Reasonable people: a memoir of autism and adoption. New York: Other Press, p. xiii.
Photo of Soma and Tito Mukhopadhyay reprinted with permission of HALO at www.halo-soma.org.