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
Living with Asperger's
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
"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."
'A little eccentric'
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
"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 realise 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.
International support group
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
It wasn't until many years later that she realised his issues went far beyond
being what she called "ornery." The local medical community was no help, Rodman
Eventually, as she was contemplating divorce, the marriage counsellor 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
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."
To learn more about living with Asperger's, visit Families of Adults Affected With
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