Researchers pulling back the veil on adult autism

This article was printed in the July 20, 2008 Vancouver Sun newspaper. Sharon Kirkey, Canwest News Service

Was the young doctor autistic?

He didn't think so: "I don't walk on tippytoes or get hypnotized by Wheel of Fortune," he explained.

But he did get upset when people didn't say what they mean. He loved math. "And then there's this odd thing I do with my hands and my nose when I'm excited and I think nobody's looking," he once wrote in the Canadian Medical Association Journal.

He thinks he may be on "some distant end" of the autism spectrum. At the other end are people like the man who organized his wife's CDs by the composer's date of birth and fell asleep on the floor during social events; his wife thought he was eccentric.

Or the office clerk who beat up a woman on his way to the bus stop one morning for the simple reason she was in his way. He was obsessed with not walking on the cracks between the tiles on the sidewalk.

Autism in children has never been more in the news. But few are talking about the adults, experts say, and few therapists are available to treat the illnesses in adults just as more are seeking help.

The official criteria for diagnosing autism spectrum disorders apply to children. Some adults only recognize autism in themselves when their child is diagnosed.

On the high-functioning end of autism is Asperger's disorder, "and that's the group that's coming to people's attention," says Dr. Deborah Elliott, assistant professor of psychiatry in the division of developmental disabilities at Queen's University in Kingston, Ont.

Even Asperger's is listed under the category "usually first diagnosed in infancy, childhood or adolescence" in psychiatry's official guidebook, the Diagnostic and Statistical Manual of Mental Disorders, and it was only in 1994 that the syndrome was added.

Adults with Asperger's have normal or above normal intelligence, but their social skills are disastrous. They avoid eye contact, have difficulty forming relationships and can't pick up on normal social cues, signs and facial expressions.

They may be able to get an advanced degree, but once employed they can't interact with their co-workers in a normal way. There's no normal coffee chit-chat, Elliott explains. They sometimes ask embarrassing questions and easily lose their tempers.

"A disagreement with a co-worker or a boss, or someone looked at them wrong, or it was a cloudy day instead of sunny like the weather man said, or you gave them the wrong sandwich," says Karen Rodman, founder and director of Families of Adults Affected by Asperger's syndrome, Inc., or FAAAS. "There's no rhyme or reason. And the problem is with everyone else around them. It's never their fault."

Some are diagnosed with social anxiety disorder, bipolar or depression. "You treat the depression but then you're left with somebody who still is a bit odd and eccentric," Elliott says. "That may be the first time they actually come to somebody's attention. Yes, he's depressed, but the reason he's depressed is because he can't develop relationships. Even though we've treated his depression, he's still stuck with disability."

Far more men than women are affected. Asperger's and high-functioning autism has been described as the extreme of male thinking, says Dr. Rutger Jan van der Gaag, a professor of clinical psychiatry at Radboud University Nijmegen in The Netherlands. "Very much detail, very little empathy."

Famous people from Isaac Newton to Einstein exhibit Asperger-like traits. "When you think of the rigidity and scrutiny you need to accomplish some of the big scientific achievements and inventions, if you're distracted by the beauty of life outside the lab, you're never going to have the perseverance to do so," van der Gaag says.

Many adults with autism recognize something is wrong, Elliott says. "They know they're not 'getting it.' They're not getting cues from people, they know they're being marginalized, they're aware they're different." But they often don't come to the attention of mental health experts until they're reprimanded at work for making an inappropriate comment, or charged with harassing or stalking.

"You can help them understand that they have a syndrome that makes them different," Elliott says. "That somehow relieves them from feeling that they're doing something terribly wrong."

skirkey@canwest.com

I think this report states a very valid point. Many adults recognize they have symptoms of Asperger's after they receive a diagnosis for their child. Is that your experience? I know I see it in other family members very blatantly.
Do you think you or someone else in your family would receive a diagnosis if testing was sought? Does the awarness that you have about Asperger's affect your interaction with those people?

Feel free to leave a comment!

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  • 7/23/2008 4:16 PM Tamara Winfrey wrote:
    I found out I had Asperger's when I was 34, & am now 37. I knew something was wrong all my life but I didn't have a clue until my niece was dxed with it. You could have knocked me over with a feather when they told me I was on the autism spectrum. I have lost jobs because of this, and even though my family knows, it's still difficult to make them understand that I don't want to do the things they want to do. I go through life never knowing when I'm going to hurt someone's feelings, offend someone I care about or make someone angry, all unintentionally. They get upset because I don't want to do things like go see fireworks, even though they know I can't take the noise and flashing lights. I have meltdowns during holidays because it's too much stimulation. Being a woman with this just makes it that much more difficult. I'm supposed to be bubbly, outgoing and all that. Nobody understands why I can't bond with other women, and women are hurt when I don't want to do girls night out types of things. I hand-code HTML for web pages and I wrote a novel-- I'm working on my second novel now-- but I can't schmooze customers to do websites full time, and I can't pitch the book to a publisher or get an agent to listen to me. I want to contribute to society, but society won't let me because I can't communicate their way. Worst of all, they see me as a genius and that only makes it more difficult for them to understand why I can't simply adjust. I can't find a doctor who will listen to me because they all see autism as Dustin Hoffman rocking back & forth in a corner reciting a phone book. There are 2 kinds of neurotypicals-- those who have written me off as hopeless, and those who don't believe anything is wrong with me even though they whisper about what a weirdo I am behind my back. Then there are idiots like Michael Savage who think I'm faking this to get disability or something. I don't want disability-- I want to be given a chance by people who accept me for who I am. Knowing that I have Asperger's is nice because I know that this is just the way I'm wired, but at the same time it underlines the futility of me trying to be heard and understood. I can't find any resources out there to help adults; all the specialists and organizations seem to be dedicated exclusively to children. If there were just an organization that matched adult Aspies to employers and schools looking for our skill sets it would be a great help, but there isn't, and I don't think I could do it by myself. If you're an adult it seems that it's too late for you and you have to sink or swim. I'm afraid that any results of this research will come too late for people like me to benefit from it. I am definitely not a kid any more, but I don't understand why this seems to preclude me from getting any kind of help. You may not be able to fix my social skills, but it would be nice if you would give me a chance to fix your gadget. The things we we CAN do might surprise you.
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