The 'Learning Curve' of Living With Asperger's

By Lisa Esposito
HealthDay Reporter

THURSDAY, April 18 (HealthDay News) -- Asperger's syndrome is disappearing as an official diagnosis, but people who live with its symptoms will continue to struggle.

"I would say that Asperger's is sort of like 'autism light,'" said Liane Holliday Willey, senior editor of the Autism Spectrum Quarterly. "Our verbal skills tend to be more developed, and we have less moments of going inward. We don't present as obvious, so we kind of fly under the radar."

"But our [lack of] ability to read your mind or read your motives is a big red flag," she said. "And that's what gets us hurt physically and emotionally and career-wise."

Holliday Willey, 53, has written books on life with Asperger's and serves as an autism consultant in Grand Rapids, Mich.

"I've had very bad things happen because I couldn't read perspectives," she said. "I'm pretty smart, and I'm educated and you'd meet me at the mall and think, 'There's a quirky girl.' You'd never have any idea how much of a struggle this all is for me."

Certain situations can be too much, Holliday Willey said.

"When I sit down to take a test, to interact with a human, to be on my own without support -- all of these groovy strategies I've created over these past 50 years can disappear pretty quickly," she said. "So I can kind of go back to a more obvious state of autism."

"Now I can take a minute to go reboot my hard drive and figure out how to behave, until it gets to the point where I'm just emotionally tired and I make my exit," she said.

Brian King, a relationship coach for people on the autism spectrum, was diagnosed with Asperger's in 2007.

"I've learned a lot of strategies that allow me to manage," said King, who lives in Illinois. "And if by virtue of those strategies I'm able to manage life more effectively, am I by any means beyond the Asperger's? No way."

He said children with Asperger's need a lot more than just traditional talk therapy.

"You need to work with this child's entire support system -- parents, siblings, educators -- to give this kid the best chance to succeed," King said. "People on the spectrum are unique in the way they're challenged and the way they need to be approached and to learn the skills they need to succeed in life. The learning curve can be huge."

Eric Lipshaw, a 21-year-old student at Oakland University in Rochester, Mich., found out he had Asperger's at age 7.

"Obviously it made things harder with friendships over the years," Lipshaw said. "Social cues, and I was oversensitive to noises and smells. I remember often in elementary and middle school I'd spend almost an hour or two a week in the [nurse's] office. I'd get terrible headaches from the fluorescent light bulbs cycling.

"I was stuck, I was rigid, I absolutely despised changes in schedule," Lipshaw said. "I was pretty much bullied my entire high school career."

"My parents worked their [rear ends] off -- and I'll love them forever for it -- to make sure I was as well-adjusted as I could be," he said.

Today "nobody would realize I'm anything but a little eccentric until I disclose to them that I have Asperger's," said Lipshaw, who has a campus radio show and hopes to work as an on-air radio talent after graduation.

Decades ago, Karen Rodman married a man who "I knew all along was intelligent, a musician, quiet -- but I did not understand to what extent [he had problems]."

It wasn't until many years later that she realized his issues went far beyond being what she called "ornery." The local medical community was no help, Rodman said.

Eventually, as she was contemplating divorce, the marriage counselor pulled her aside. "She told me that she thought my husband had Asperger's syndrome and Tourette's [syndrome]," Rodman said.

Rodman had never heard of Asperger's. She spent the next weekend in book stores reading anything she could find on autism and Asperger's.

"Light bulbs over my head the more I read," she said. "My husband had been living a lifetime with two neurological-biological-developmental disabilities -- and no one knew it except his family, behind closed doors." She boils down her existence as a "neurotypical" -- a term for someone not on the autism spectrum -- spouse to one word: lonely.

In 1997, Rodman founded the international support group Families of Adults Affected by Asperger's Syndrome.

Holliday Willey's father also had Asperger's for most of his life, but only discovered that as an older man.

"My father was 75 when he was diagnosed," she said. "At that point, he said, 'Now I understand why I was bullied. Now I understand why I was never promoted to management.' He was a brilliant engineer. But he didn't have that social communication, that nonverbal communication, those sensory problems adjusted for."

Her mother -- the neurotypical in the family -- had a lot to deal with, Holliday Willey said.

"My mom was under the impression that I didn't like her, didn't love her, didn't respect her. I didn't hug her," she said. "Now that she knows it was not her -- it was our neural wiring -- she'll say, 'Give me a hug if you hate it or not; it's for me.' So I'll hug her and go, 'Eww, that's enough, let go,' and she'll tease me about it."

Copyright © 2013 HealthDay. All rights reserved. SOURCES: Liane Holliday Willey, senior editor, Autism Spectrum Quarterly, and autism consultant, Grand Rapids, Mich.; Brian R. King, L.C.S.W., relationship coach, Illinois; Eric Lipshaw, college student, Oakland University, Rochester, Mich.; Karen Rodman, president and founder, Families of Adults Affected with Asperger's Syndrome

View the original article here

Guideline Changes Have Asperger's Community on Edge

By Lisa Esposito
HealthDay Reporter

THURSDAY, April 18 (HealthDay News) -- People with Asperger's syndrome -- mild autism with normal or sometimes superior verbal ability and intelligence -- are at a crossroads: Their diagnosis is about to disappear.

In 1994, Asperger's was recognized as its own disorder in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-4). For some people, realizing that they fit into the Asperger's diagnosis was a "eureka" moment of sorts.

In mid-May, however, the American Psychiatric Association (APA) will unveil the latest edition of the diagnostic manual. In the DSM-5, the Asperger's term will not exist -- and many people with Asperger's are upset.

Hallmark symptoms -- significant impairment in work and social functioning, inability to understand nonverbal communication, repetitive behaviors and restricted routines -- will be folded into the term "autism spectrum disorders," ranging from the mildest to most severe autism.

The APA says that with the change, diagnosis will become more accurate and consistent.

"The intent was that it would make diagnosis more straightforward," said Catherine Lord, a member of the APA group that updated the diagnoses. "They're not necessarily different disorders because, at least biologically, nobody can differentiate Asperger's from autism."

"One of the good things that the idea of Asperger's syndrome did was make people aware that somebody can have quite significant social deficits but be a very intelligent person," said Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. "The goal of our committee is not to lose those people but to say they can be recognized within this broader concept of autism spectrum disorders."

But many with Asperger's believe they will fall off the spectrum and lose access to needed services. And they fear that their very identity is at stake.

Some people with Asperger's syndrome "formed their first identity of normality within the group," said Liane Holliday Willey, senior editor of the Autism Spectrum Quarterly and an autism consultant in Grand Rapids, Mich. She has Asperger's.

So does Brian King, an Illinois-based relationship coach and licensed clinical social worker. With the change, he said, "people who have embraced the Asperger's label are now thinking, 'I have an Asperger's support group. I call myself an Aspie. If you take that from me, who am I?'"

It's not clear how many people have Asperger's. Estimates vary anywhere from three in every 1,000 to one in every 200 people. But experts say the impact of the change will be widespread.

In the United States, DSM diagnoses are closely aligned with health insurance billing. Internationally, governments and social agencies use the manual to approve funding for services and research.

"[The DSM] has repercussions throughout the world, especially the English-speaking world," said Tony Attwood, an adjunct professor at the Minds & Hearts clinic in Brisbane, Australia.

"I think the banning of the term Asperger's syndrome is too premature," Attwood said. "They're very upset [in Australia]. So they have to explain to, for example, employers, that they are now to be called autistic and have mild autism."

In October, APA member Lord published a study that found only about 10 percent of children would lose their autism diagnosis under the new criteria. Attwood, however, said estimates of people who will lose funding eligibility range anywhere from 10 percent to 75 percent.

King said people who are not obviously struggling may lose out.

"If there is some kid in college who's an intellectual juggernaut -- they can pass socially, who can think his or her way through social situations -- but is so in need of services on campus, in need of accommodations, that's the person I'm worried about," King said. "The one who, underneath it all, is suffering, but is so good at passing that they're off the radar of a lot of diagnosticians."

For children with Asperger's, early intervention, which includes parent training, is considered ideal. One question is whether early intervention will be easier or harder to obtain under the new criteria.

"In California, for example, if you have an Asperger's diagnosis, you are not eligible for the autism services as a young child," Lord said. But Attwood said he's concerned that with the change, "parents may not be eligible for early intervention services before the child goes to school."

Lord said a family "must be ready if they meet someone who doesn't understand the new criteria to be able to say, 'Look, one principle is a lack of social reciprocity. And even though my son is 12 years old and very bright and does go to school and does love his teacher and does take turns well, he still really struggles with ... understanding what a friend is even though he has play dates and does do things.'"

Eric Lipshaw, 21, a student at Oakland University in Rochester, Mich., is "110 percent" against the diagnosis change.

"I get disability support services, assistance on campus," Lipshaw said. "They give me a scribe for my handwriting -- that's illegible. They have note-takers and anything else we need."

Some job seekers with Asperger's turn to agencies that specialize in people with disabilities. Other adults need social security benefits or residential services. Some will lose these services along with the Asperger's diagnosis, Attwood said.

Karen Rodman, president and founder of Families of Adults Affected with Asperger's Syndrome, said although the Asperger's listing in DSM-4 was inadequate it was better than not using the term at all.

Rodman, whose husband has Asperger's and Tourette syndrome, said people with the diagnosis and their family caregivers already have unmet needs for assistance that will only get worse with the change.

One undercurrent in the debate has been the suspicion that the change was made to cut costs. Attwood and King both said that although that might or might not have been an intention, it will be an effect.

"The medical insurance companies and other agencies will save money," Attwood said. "I can't say that this has been the driving force of the change; all I know is that this is the highly probable outcome. With fewer people being diagnosed, it's going to be less expensive for the agencies that support such individuals -- either government or private."

Some people with Asperger's may fit under "social communication disorder" in the new DSM-5.

The manual also is adding "sensory sensitivity" to the autism spectrum criterion. This involves extreme sensitivity to a person's environment, including the touch of other people, the sensation of the clothing they wear, and sights, smells and sounds around them. Attwood praised this addition.

"The ultimate impact of the DSM is going to be wait-and-see," King said. "It's a guideline, not an absolute end-all and be-all of how to treat this. A clinician can use their own judgment based on their own experience."

Copyright © 2013 HealthDay. All rights reserved. SOURCES: Catherine Lord, Ph.D., director, Center for Autism and the Developing Brain, New York-Presbyterian Hospital/Weill Cornell Medical College, New York City; Liane Holliday Willey, senior editor, Autism Spectrum Quarterly, and autism consultant, Grand Rapids, Mich.; Brian R. King, L.C.S.W., relationship coach, Illinois; Tony Attwood, adjunct professor, Minds & Hearts Clinic, Brisbane, Australia; Eric Lipshaw, college student, Oakland University, Rochester, Mich.; Karen Rodman, president and founder, Families of Adults Affected With Asperger's Syndrome

View the original article here

Asperger's and Violence: Experts Weigh In

Dec. 19, 2012 -- Reports that Newtown shooter Adam Lanza had Asperger’s syndrome, a highly functioning form of autism, have led some to wonder whether that diagnosis could have played a role in the mass shooting, which killed 20 children and six adults at a Connecticut elementary school last week.

As with many cases such as this, the answer is complex. While experts are clear that Asperger's doesn’t make a person more likely to commit a violent crime, some say it may affect the way a crime is carried out.

Advocates for people with autism are more direct.

“Autism did not cause this crime,” says Peter Bell, MBA, executive vice president for programs and services at the nonprofit group Autism Speaks.

Bell, who also has a son with autism, says it’s important to understand that the condition is a developmental disorder that arises early in life. Children and adults with autism spectrum disorders struggle to communicate with others. They may feel socially isolated and have trouble feeling like part of a group. They may also have repetitive or restrictive behaviors, like rocking or shaking their hands.

“There’s absolutely nothing in that definition that talks about violence or committing aggressive acts,” Bell says.

Indeed, psychologists and psychiatrists agree that people with autism or Asperger’s are not more likely to commit violent crimes than members of the general population, but they say in very rare cases, it can happen.

In those isolated instances, forensic psychiatrists tell WebMD, a diagnosis of Asperger’s or autism may help explain some aspects of seemingly unfathomable acts.

“I think it does matter. I think that’s probably part of making sense of this horrible thing that happened. I think that’s part of the equation,” says Marc Hillbrand, PhD, a clinical psychologist at Yale University in New Haven, Conn.

Hillbrand has studied the psychology of mass shootings, but he had no direct knowledge of Adam Lanza’s medical history.

“What’s so unusual about this individual, if indeed he has Asperger’s, is the use of weapons. There are a few cases of people with high-functioning autism who have committed violent crimes using weapons, but it’s a very small number of people,” he says.

Marianne Kristiansson, PhD, professor of forensic psychiatry at Karolinska Institute in Stockholm, Sweden, has published one of the few studies looking at the characteristics of a small number of violent offenders who also had autism.

She said when she heard about the Connecticut shooting, her first thought was that the shooter might have had Asperger’s.

“That was just my diagnosis,” Kristiansson says. “This offender behavior that he has presented is quite typical of a subject with ... autistic traits.”

View the original article here