Shame and Stigma
I feel no shame in saying “my son Charlie has autism.” But is the stigma that was directed at the parents of autistic children—who, in the mid-20th century, were thought to have caused their child to become autistic by being cold and withdrawn—entirely gone? Even as we understand more and more about autism, are some shame and stigma still attached to being autistic, and to those who are the parents and family of autistic persons?
Autism is mentioned along with ADHD and mental illlnesses such as depression in a new book, The Mark of Shame: Stigma of Mental Illness and an Agenda for Change, by Stephen Hinshaw, chair of the Department of Psychology at the University of California at Berkeley. An article in the January 16th UC Berkeley News notes that Hinshaw argues that, until there is a “civil rights movement” for those with mental illness—as long as there is prejudice and stereotyping and, indeed, fear of the mentally ill—they will continue to (in Hinshaw’s words) “‘lose out on major life opportunities,’” from obtaining a driver’s license to job discrimination.
As Congress considers legislation that would require the same health coverage for mental illness as for physical ailments, lawmakers are becoming more receptive to evidence of the injustices suffered by those with disorders ranging from depression and attention-deficit/hyperactivity disorder to schizophrenia and autism.
Hinshaw, who has long studied developmental psychopathology and has written about his own father’s “lifelong struggle with misdiagnosed bipolar disease,” writes that, despite the many advances in the treatment of mental illness (including medication and psychological therapies), the “public perception of serious mental illness is more negative today” than it was half a century ago.
A 2005 government-funded study, the National Comorbidity Survey Replication, found that fewer than half of those who reported mental illnesses during that year sought treatment, and those who did waited at least a decade, by which time they were more likely to have developed additional problems.
“‘Concealment,’” Hinshaw writes, “‘remains a major means of coping.’”
Indeed: I was very struck by Hinshaw’s writing that the stigma and the shame about the mentally ill are greater today, at the beginning of the 21st century, than they were in the middle of the previous century. There is certainly less shame and stigma about autism than was the case fifty years ago; one has only to watch the documentary Refrigerator Mothers or read Clara Claiborne Park’s The Siege: A Family’s Journey Into the World of an Autistic Child (1967) to see how our cultural perceptions of autism have drastically changed. And yet, is there some residual shame about having an autistic child that impels efforts to “conquer” and “cure” autism? To prefer not to say that autism is at least partially genetic in origin, lest having an autistic child in the family means that others in a family may also have an autistic child, an autistic grandchild?
Questions like these remind me of how important it is to keep working to understand autism so that, one day, there truly is no “shame and stigma” about having autism in the family. I end with Hinshaw’s words:
“Neglect and exclusion impede adequate research funding and clinical care, fueling the myth that mental illness is lifelong, hopeless and deserving of revulsion.”
And this myth, like the myth of the “refrigerator mother,” are very much in need of debunking.
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POSTED IN: Books, Health, History, Medicine, Psychiatry, Psychology, Stereotypes
12 opinions for Shame and Stigma
Lisa/Jedi
Jan 17, 2007 at 9:53 am
It will be interesting to see what reverberations occur as a result of lumping autism in with mental illness… It seems a very complicated issue to me & one that depends a good deal on point of view. I speak as the child of a person who strugged with bipolar mental illness for most of his life (& I suffered from the abuse & confusion of living with such a parent), the sister-in-law of a schizophrenic person, & the mother of an autistic child. Autism crosses that line between “mental illness” & neurological difference, at least in our experience with Brendan’s extreme OCD anxiety, & many people with autism rely on medicines that are used specifically for psychiatric illnesses. How we perceive any “illness” leads to how it’s treated & responded to, & I will admit that it’s easier for me to think of my son’s difficulties as being autism, rather than due to mental illness, but to be honest, isn’t it all based in the brain? Is it useful to separate everything out neatly & say that some people are “mentally ill” & others have “physiologic brain chemical imbalances”? Does it make the resulting behaviours easier to cope with if they arise from some other source than “mental illness”? I’m not a neurologist, so I don’t understand the subtle differences that there may be, but I can’t help but see the predjudice against mental illness driving us apart, rather than holding us together. Conversely, I can see how many people with autism have been harmed by being treated as though their autism were a mental illness, rather than a developmental disorder that responds to a variety of therapies… Our society’s failure to see & value people as individuals has caused so much harm…
And I must admit that I’m surprised that there is more predjudice now than 50 years ago… there seem to be so many more people in treatment for depression these days & so much more openness about discussion depression that I’d think the shame factor would be dropping.
Leila
Jan 17, 2007 at 1:06 pm
I have no problem telling this to people (family, old friends, new acquaintaces), except for the few ones that I know would be able to use this information against me in a cruel way. There’s a lot of ignorance out there.
tracy roberts
Jan 17, 2007 at 5:59 pm
please read my blog tracytalks there is an item about user carers and touches on th subject of stigma in mental health act changes
mcewen
Jan 17, 2007 at 6:13 pm
I’m surprised that prejudice is worse now that 100 years ago. Perhaps it’s because we’re able to communicate better today that we’re more aware of ours and other people’s prejudices?
Cheers
ashley
Jan 17, 2007 at 10:19 pm
Good point McEwen. And lovely poignant response Lisa/Jedi! Your name always catches my attention when you comment.
I see many children at the preschool and elementary school level that have a “rap” just for being a handful by other teachers and parents of potential play dates.
ex: A story about a “wild” boy that spit on a friend’s birthday cake at his party lived on two years later. Can’t this boy catch a break? Hasn’t he grown up a bit since kindergarten? How many parents spreading the story even witnessed the incident?
Young children at their alleged most intuitive points in their lives pick up on this rap as well. Autism aside, a child with a behavior plan, an IEP, very tough in the mainstream world to be seen beyond the rap. So where does a “major” disability like Autism leave those kids? It’s not easy.
Autism Vox » What else can we talk about if there’s no autism epidemic?
Jan 18, 2007 at 4:15 am
[…] “Sometimes in the panic of the ‘epidemic,’ however, we forget how lucky we are in North America—lucky to have a label that doesn’t stigmatize the way it used to,” writes Grinker in his book’s last chapter, “Beyond the Curve.” He mentions Jason McElwain, the autistic teenager who scored seven baskets in the closing four minutes of his high school team’s basketball game in February 2006, and who has been the reason for both celebration among the autism community and also the source of critique, as some have noted that the media coverage is great, but there are still those children with “severe autism” who are “low-functioning” and who point to why a cure for autism ought to be found. We’re lucky that we are finally getting more accurate prevalence rates, that we have medication and treatments that help people with autism, and that we can now imagine positive and productive futures for them. The chidren diagnosed with autism throughout the 1980s and 1990s have already grown up and are being treated more humanely than autistic adults were in the past. (p. 290) […]
catherine
Jan 26, 2007 at 12:16 pm
i’m not sure how this fits exactly — but upon learning of my son’s recently diagnosed bone/endocrine disease a friend actually asked me, “well, you’d rather a bone/endocrine disease than autism, wouldn’t you?” personally, i haven’t ranked these sorts of things and find any disease or syndrome or whatever undesirable for my son, if i actually had any control over it. also, already wearing out trying to explain something chronic and incurable . . .
Kristina Chew, PhD
Jan 26, 2007 at 4:26 pm
It does fit and I really appreciate your sharing it—–I guess your friend’s question reinforces in me how pervasive negative perceptions of autism are.
Autism Vox » Shame and Stigma: On what happened on January 19th
Jan 27, 2007 at 9:03 pm
[…] On January 17th, I wrote about the “shame and sigma” still associated with mental illness, autism, ADHD, and other psychiatric disorders. A book, The Mark of Shame: Stigma of Mental Illness and an Agenda for Change, by Stephen Hinshaw, chair of the Department of Psychology at the University of California at Berkeley, argues that, until there is a “civil rights movement” for those with mental illness—as long as there is prejudice and stereotyping and, indeed, fear of the mentally ill—they will continue to (in Hinshaw’s words) “‘lose out on major life opportunities,’” from obtaining a driver’s license to job discrimination—-and even to attending school among their peers. Another quote from Hinshaw is relevant here, I think: “Neglect and exclusion impede adequate research funding and clinical care, fueling the myth that mental illness is lifelong, hopeless and deserving of revulsion.” […]
Autism Vox
Jan 27, 2007 at 9:06 pm
[…] On January 17th, I wrote about the “shame and sigma” still associated with mental illness, autism, ADHD, and other psychiatric disorders. A book, The Mark of Shame: Stigma of Mental Illness and an Agenda for Change, by Stephen Hinshaw, chair of the Department of Psychology at the University of California at Berkeley, argues that, until there is a “civil rights movement” for those with mental illness—as long as there is prejudice and stereotyping and, indeed, fear of the mentally ill—they will continue to (in Hinshaw’s words) “‘lose out on major life opportunities,’” from obtaining a driver’s license to job discrimination—-and even to attending school among their peers. Another quote from Hinshaw is relevant here, I think: “Neglect and exclusion impede adequate research funding and clinical care, fueling the myth that mental illness is lifelong, hopeless and deserving of revulsion.” […]
Autism Vox » What’s Your Label? Your Diagnosis?
Feb 27, 2007 at 8:18 am
[…] Gifted? Autistic? Or Just Quirky?: As More Children Receive Diagnoses, Effects of These Labels Seem Mixed reads the headline for a February 27th Washington Post article by Maia Szalavitz. The article describes the rising number of American children who are given labels that range “from psychiatric and neurological diagnoses such as Asperger’s and attention-deficit disorder to educational descriptors including “gifted” and “learning disabled.” Indeed, parents—once fearful of the stigma associated with such labels, are now (according to the article) seeking them out, in order for their children “to get them extra time on tests, to receive insurance reimbursement for treatment, to qualify for extra educational services or simply to have a name (and treatment) for a problem.” […]
Stigma and Pride
May 13, 2008 at 12:09 pm
[…] the stigma attached to mental illness that rings true. There’s been more than a few people whom […]
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