Centers for Disease Control and Prevention
WORKING TO COMBAT THE STIGMA OF AUTISM by Al Baker, via NYTimes.com
Parents of autistic children, like Jaewoo Kwak, 8, can face stereotypes and misconceptions in the Korean-American community.
Autism, or the fear of it, chased one Korean mother from her Queens church. “I very carefully told the mom: ‘I think your child is a little different. Why don’t you take the test for autism?’ ” said the Rev. Joy Lee of the Korean Presbyterian Church in Flushing. “She told me, ‘Oh no, my child will be O.K.’ So then she quit. After that, she did not pick up the phone.”
Ms. Ko said her own mother refused to discuss Jaewoo with relatives and friends after he was given his diagnosis.
It crushed another Korean mother — twice. First, she said, when her son received the diagnosis, and again when friends saw it as a sign that she herself was sick. To cure him, they said, she needed psychotherapy.
Sun Young Ko, of Forest Hills, whose 8-year-old son, Jaewoo Kwak, was given a diagnosis of autism 18 months ago, said her own mother refused to discuss her grandson with relatives or friends. “She’s kind of hiding,” Ms. Ko said.
Raising an autistic child is hard enough, let alone raising one in a culture in which the stigma surrounding autism still runs high. Now, inspired by a 2011 study of a South Korean city that found relatively high rates of autism, a leading advocacy group is teaming with churches, doctors, schools and news organizations in Flushing, trying gingerly to bring Korean parents around to the idea that if there is something unusual about their child, concealing it and avoiding help are absolutely the wrong things to do.
“More so than other populations, Korean-Americans really measure their own self-worth, and the worth of the family, in terms of what the child is able to achieve and what the child means to the family,” said Roy Richard Grinker, a professor of anthropology at George Washington University and the senior author of the South Korea study.
“If I have a child with autism, there is no effect on our house value, on the ability to make friends and on an ability to get promoted at work,” said Dr. Grinker, who wrote the book“Unstrange Minds: Remapping the World of Autism” about life with his autistic daughter, Isabel, now 21. “A lot of Korean families fear that.”
It is a crucial moment for autism across the United States. The number of children who receive a diagnosis of autism has been rising for years, without any consensus about why, other than increased awareness of the condition. At the same time, autism itself is being redefined: the newest edition of the country’s manual for mental disorders, released weeks ago, collapsed some categories of autism, including Asperger syndrome, under the umbrella of “autism spectrum disorder.” Some experts have predicted the change will lead to fewer diagnoses, and hence cuts in public spending on therapy and special education.
In New York City, the number of public school students classified as having autism this year, 10,199, or roughly 1 percent of enrolled students, is up 50 percent from four years ago, according to the city’s Education Department. Diagnoses among Asian students have also jumped. But while they make up 16 percent of the school system, they account for only 8 percent of those with autism diagnoses.
The South Korea study, which was financed by Autism Speaks, the same advocacy group behind the Queens effort, screened 55,000 students in the Ilsan district of the city of Goyang. Researchers found that 2 percent of them were autistic, but that two-thirds of those students had not previously received a diagnosis or any psychological or special education services. The prevalence was surprising, because it was nearly twice the ratereported in the United States, according to the Centers for Disease Control and Prevention. A similar study is under way in South Carolina.
The Korea study attributed the large number of undiagnosed cases to the stigma of autism. In recent interviews, sometimes through translators, Korean mothers of autistic children in the New York area opened up about their experiences. Several said the diagnosis strained their marriages. One, Mee Hee Kim, said it contributed to her divorce. The mothers also described the subtle ways that they and their children were shut out of normal social or familial encounters, a problem parents from many cultures report, or how they isolated themselves, retreating from invitations to dinner parties or play dates.
Some also worried that their autistic children’s siblings would struggle to find spouses in the Korean community. Ms. Ko, 42, the mother of Jaewoo, said the sadness led her to contemplate suicide, though she never attempted it.
Often, a diagnosis leads to guilt.
“In my experience, so many people ask me: ‘Did you do something wrong? Do you guys fight each other in front of the kids?’ ” said Anna Im, the mother of a 14-year-old autistic boy. “Koreans believe these little things affect the child and they become autistic.”
The outreach effort in the Flushing area, where the bulk of the city’s 90,000 Korean residents live, began with a round of interviews in the community and an adaptation of autism literature for Korean readers. In late April, the local Korean news media were briefed on the project. Then the translated autism materials were spread to 60 pediatricians, preschools and early childhood centers.
In a year or so, researchers will measure whether several early childhood agencies that contract with the city are seeing spikes in requests for help from Koreans grappling with autism. The hope is that whatever is learned about the disparities can be used to assist other ethnic groups and immigrant populations.
“We are trying to build a model, for outreach and facilitation, that would support immigrant families, minority families, to access services available from school systems and from cities and states,” said Andy Shih, an official at Autism Speaks who is managing the initiative.
As diagnoses of autism have become more common, some early intervention providers have taken advantage of the growth in public spending, and lax oversight, by billing for services that were not needed or never provided. Dr. Shih acknowledged that some businesses might “exploit parents scared and confused about how to best support their children.”
That is why, he said, Autism Speaks took care in translating and disseminating the literature on autism, and engaged only with providers recommended by the city’s Bureau of Early Intervention. “We want to get it right and make it useful,” Dr. Shih said.
Unscrupulous providers are not the only potential pitfall. Young Seh Bae, 48, who leads a committee of the Korean American Behavioral Health Association and is the mother of a 16-year-old boy with autism, said she worried that a focus on Koreans, in both the South Korea study and the Flushing effort, could exacerbate stereotypes.
“When you look at the different cultures, and compare the disabilities issues, why do you have to just look at Korea?” she said. “Why don’t you look at certain parts of the United States? What about Oregon? Or Oklahoma?”
And though the study in South Korea was “rigorous,” Dr. Winston Chung, an assistant professor of psychiatry at the Geisel School of Medicine at Dartmouth, said it should be viewed carefully because the researchers used tools designed by a Western culture to measure children in an Eastern one. Typical behaviors in a “Confucian society,” where the norms for eye contact, gesturing social reciprocity and expressing oneself are “profoundly different,” and where the skill of nunchi — measuring someone’s mood and desires without speaking — is valued, could be misconstrued as autistic in some cases, he said.
“In Korean culture, harmony is prioritized, and some kids growing up with this social pressure might be better off keeping their heads down and mouths shut, and these tendencies could be mistaken for autistic traits from a Western perspective,” said Dr. Chung, whose parents were born and live in Korea.
Still, community leaders acknowledge that resistance to autism diagnoses “is a continuous problem,” said Assemblyman Ron Kim, a Korean-American who grew up in the Flushing area.
But it is better than a generation ago, he said, when families thought autistic children were possessed, “where they were literally demonized.”
- Autistic child’s breakthrough gains worldwide fame (kvue.com)
- David Mitchell: learning to live with my son’s autism (guardian.co.uk)
Health care and workplace policies need to recognize the full impact of autism, and alleviate costs for the families with greatest needs
- Despite law, some families lack autism coverage (utsandiego.com)
Mobile gadgets provide numerous easy distractions from work. But what if these devices could actually help people with developmental disabilities stay on task in the workplace?
A team of occupational therapists recently published a four-year study of three people with autism spectrum disorders, or ASD. The subjects were all provided with a job and given a specially programmed iPod touch to help them keep that job. Each iPod featured several apps, including task reminder alarms, checklists and video prompts for self-managing behavior. The three people with an ASD used the iPods to help them work successfully as custodians or housekeepers. The study is in the Journal of Vocational Rehabilitation. [Tony Gentry et al., The Apple iPod Touch as a vocational support aid for adults with autism: Three case studies]
The CDC says that about one percent of all U.S. children are diagnosed with an autism spectrum disorder. Only about 15 percent of U.S. adults with an ASD have paying jobs.
As millions of us allow mobile devices to impair our communication and socialization, those with an ASD may find that the same devices can help them become better integrated into society.
[The above text is a transcript of this podcast.]
- There’s an app for that: Apple iPod Touch helps adults with autism function in the workplace (eurekalert.org)
Designer appears in PSA for the philanthropy Autism Speaks
Public service advertisement (PSA) for Autism Speaks, featuring renowned fashion designer Tommy Hilfiger.
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Hilfiger said that one of the reasons he chose to appear in a public service announcement for the philanthropy Autism Speaks was to honor his16 year-old daughter, Kathleen.
He said that she when was five years old, she was given the diagnosis of being “developmentally delayed.”
Despite seeing doctors at Harvard and Yale, he couldn’t get a grasp on what the trouble was.
Finally they discovered she was “on the spectrum of autism” — but it still left more questions than answers.
He’s proud of his “really smart” daughter who now attends a special school.
“She’ll come and wake me up in the middle of the night and ask, ‘Am I intelligent?’ or ‘Someone in school told me I was a retard, is that true?’ It’s just heart-wrenching.”
While he’s happy his daughter is getting the care and help she needs, he wishes that more people cared about autism.
“The government is not involved in it. People aren’t donating enough money. There’s not enough research,” he said. “There’s no cure. It needs help, so we’ve become involved.”
He said that having a stepchild with similar problems has proved to be a comfort for his daughter.
“Dee has a son my daughter’s age who had the same issue,” he said. “That really brought us together.”
It’s why we do what we do; as parents of children on the Spectrum, we know if we make the efforts our kids do everyday, their lives and their futures become brighter. Why do we read and agonize over IEPs, diets, treatment options? Why do we immerse ourselves with articles, information sessions, videos, and Autism support groups? It is certainly not for our own entertainment; we are the parents: it is our responsibility and our one true calling. We are here to apply all that we have learned to lighten their load and give them a real chance to become happy, well-rounded and independent adults. -Ed
Autism scientists search for help, for their own kids’ sakes
Kevin Pelphrey is one of the top autism researchers in the country. He’s also a father of three, including two kids diagnosed with autism spectrum disorders.
Neuroscientist Kevin Pelphrey has earned a Ph.D., a long list of awards and million-dollar grants from the National Institutes of Health.
None of that impresses his 6-year-old son, Kenneth.
“‘Dad,’ he says, ‘why haven’t you cured autism yet?'”
Young Kenneth has good reason to be impatient — and unusually curious about his father’s work, says Pelphrey, one of the country’s leading autism researchers. Two of Pelphrey’s three children — Kenneth’s big sister, Frances, and little brother, Lowell — have been diagnosed with autism-spectrum disorders.
“I’d really like to cure autism and be out of a job,” says Pelphrey, an associate professor of child psychiatry at the Yale School of Medicine‘s Child Study Center. “I wish I had more ideas faster.”
Pelphrey is one of a handful of leading autism scientists who also have children with the disorder. Autism-spectrum disorders, which cause impairments in communication and socializing, as well as repetitive behaviors, now affect one in 88 children, or more than 1 million in all, according to a new report from the Centers for Disease Control and Prevention.
High-functioning autistic adults are also contributing to the study of autism. In a recent essay in Nature, University of Montreal psychiatry professor Laurent Mottron singled out the work of a self-taught researcher with autism, Michelle Dawson, with whom he has co-authored 13 papers and several book chapters.
Families, of course, have a long history of rallying to the aid of their children, using whatever talents they possess. Most of the major non-profits funding autism research — including the Simons Foundation, Autism Speaks and the Autism Science Foundation — were founded by the parents or grandparents of people with autism.
Working for a cause
“It’s definitely why I do what I do,” says Edwin Cook, a professor of psychiatry at the University of Illinois at Chicago College of Medicine, whose autistic brother died in 1989 at age 28. He’s currently studying genes related to autism, as well as helping to lead advanced clinical trials of a drug to treat social withdrawal in autism. “I’ll die not knowing what I wanted to, but hopefully I will have contributed a little bit along the way.”
Ricardo Dolmetsch, an associate professor of neurobiology at Stanford University, says his son’s autism diagnosis has changed both his personal and professional life.
A decade ago, Dolmetsch was working in biophysics. He changed fields when his son, now 9, was diagnosed. Transforming the focus of his research, he says, was part of the “phases of grief” that parents often undergo when faced with a diagnosis of autism. After overcoming their initial denial of their son’s condition, both he and his wife felt compelled to “leave no stone unturned,” says Dolmetsch.
“It was very traumatic,” says Dolmetsch. “We had to change the direction of my lab. We had no funding. We had no track record. But it’s motivating for me and for my lab. There is nothing like working for a cause. It’s why we do what we do.”
Dolmetsch’s work has been singled out by Thomas Insel, director of the National Institutes of Mental Health, as a “game changer” in autism. To help scientists study the autistic brain — a notoriously difficult task, given that doctors can’t routinely biopsy the brain, as they might a colon tumor — Dolmetsch found a way to “create” brain cells in a lab dish, by transforming skin cells of autistic children into stem cells, then back into neurons, or brain cells.
This work was made more difficult, Dolmetsch says, by the fact that caring for a child with a disability is a full-time job. Although his wife, neurobiologist Asha Nigh, supports his research, such as through managing projects and writing grant proposals, she has put her own scientific career on hold in order to care for their son and his brother, age 7. In his opinion, Dolmetsch says, his wife has earned an honorary doctorate “in getting insurance coverage for stuff.”
“The finances of autism are brutal,” Dolmetsch says. “The amount of continuous care these kids need is a lot. … The only thing that works at all are behavioral treatments,” which, depending on the state and one’s health plan, may not be covered by insurance, he says. “They’re very intensive… and they’re horrifyingly expensive.”
In some ways, knowing too much about autism can be a burden, Dolmetsch says.
“On the one hand, I get insights from him and his buddies and going to the clinic,” Dolmetsch says. “The downside is that there is a certain amount of denial that is important when you are raising a child and you don’t know exactly what is going to happen to them. It’s harder to have that denial if you are a scientist. You’ve seen it in other people, and you know what can happen and you know what the statistics are.”
Still, Dolmetsch feels lucky that his work may help scientists better understand what’s happening between brain cells in children with autism, and even lead to new drug therapies. He also works hard to mentor young researchers and interest other scientists in autism.
Dolmetsch says he also tries to answer questions from other parents, who write to him for advice. Because there are so few effective treatments for autism, many parents turn to alternative therapies. In many cases, however, those therapies are ineffective, a waste of money or, even worse, dangerous, Dolmetsch says. Recently, he’s gotten a lot of e-mails from parents looking to go abroad for mysterious “stem-cell therapies,” he says, including treatments in which practitioners offer treatments made with stem cells derived from fat, at a cost of up to $30,000.
“There are a lot of hucksters,” Dolmetsch says. “They’re springing up everywhere. … In the best case, it’s fraud, because they will put the cells in your body and they will be attacked by the immune system and die. In the worst case, they will cause something terrible, like cancer. … This has to be fraud, because we are not about to put stem cells in anybody’s brain. People are just super desperate. I’m just as desperate as they are.”
Siblings change things
Pelphrey was studying a subject relevant to autism — the “social brain” — when his daughter was diagnosed, at age 4. Like Dolmetsch, he shifted his research to focus exclusively on autism. Insel notes that Pelphrey has helped to change the way people think about autism, by finding that the siblings of autistic children appear to share some of their brain patterns, but find ways to compensate.
“You can see why they’re so passionate,” Insel says.
Pelphrey didn’t think much of enrolling his youngest son in one of Yale’s research projects, assuming that the child would serve as a control group of “healthy” kids to their autistic siblings.
Instead, his son, Lowell, was also diagnosed with a form of autism, called pervasive development disorder-not otherwise specified, or PDD-NOS, at age 1½. In spite of Pelphrey’s expertise in autism, and experience as the father of an autistic daughter, he hadn’t noticed his son’s symptoms.
“We honestly thought he would get a clean bill of health,” Pelphrey says. “Then we found out he was developing toward autism.”
Thanks to that early diagnosis, Lowell began 32 hours a week of early behavioral therapy. He has made impressive progress. Today, at age 3, Lowell no longer has any autism-spectrum diagnosis, Pelphrey says.
“He’s not on the spectrum anymore,” Pelphrey says. “We kind of altered his developmental course. He still has subtle language and social deficits, and he’s awkward and shy. But it’s a matter of personality at this point. Frankly, he’s not all that different from most of my professor colleagues. I think he will have a very different life.”