Hope and support after Aspergers

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Hope and support after Aspergers

ASPERGERS TRAITS

Asperger Syndrome is hard to diagnose, but behavioural signals

include:

Stressed or depressed behaviour.

Behaviour indicating anxiety, such as pacing, clicking pens.

Unusual repetitive movements such as hand flapping, finger twisting,

tics.

Unusual or no response to emotional situations.

Being described as hyperactive, inattentive or unfocused.

Highly developed verbal skills, poor writing skills.

Difficulty handling unstructured times such as recess or gym class.

Inability to make friends.

ASPERGERS FACTS

Statistics are vague and varying, but Aspergers occurs in roughly one

in 1,000 people.

Only one in eight Asperger children are girls but they often are very

sensitive to any touch, including something as slight as that of a

clothing tag. Some will eat only a certain food.

Celebrities who have been reported to have Aspergers include director

Spielberg, actor Dan Aykroyd, scientist Albert Einstein and

pianist Glenn Gould.

The name comes from a Viennese psychiatrist, Hans Asperger, who noted

the cluster of characteristics in the 1940s. A British doctor brought

his work to contemporary attention in the '80s.

One mom's struggle leads to group offering practical expertise on

baffling syndrome

Dec 27, 2007 04:30 AM

Dunphy

staff reporter

A 10-year-old girl refuses to wear anything but her bathing suit. In

winter. To school. To the distress of her parents.

A 12-year-old boy is obsessed with Toronto's transit system,

memorizing the location and number of every city bus and subway route.

Normal-looking and normal-behaving in many ways, these are GTA

children with Asperger Syndrome, commonly thought of as a form of

high-functioning autism. But it's rare and frequently misdiagnosed as

an attention deficit or anxiety disorder, or even giftedness.

In fact, Aspergers children are often overwhelmingly bright, but they

can't process more than one thing at a time. Super sensitive to

outside stimuli, they easily overload. One describes being in a

classroom like being in a closet with 2,000 people talking at once.

As a result, they often have highly focused, if unusual, interests.

They may know the latitude and longitude of every world capital city,

but they can't read non-verbal communication and therefore are duds

at social interaction. Worst of all, they are smart enough to know it.

" I'm so bad, I should be dead, " Leaton told his mother,

, when he was just 7. He'd fly into rages – punch and kick – but

not be able to tell his parents why. But he is also a sweet,

affectionate boy who loves reading maps.

Then, last summer, at age 11, he was diagnosed with Asperger Syndrome.

" He's happier because he knows it's not his fault now, that parts of

his brain don't connect. They're all there; they just don't connect.

Now we just have to learn the skills to get along with this, " says

his mother , a retired teacher.

She is finding them – and moral support – in the new Eglinton Ave.

offices of the Aspergers Society of Ontario.

For eight years, Margot Nelles ran the society single-handedly out of

the pantry nook off the kitchen of her small home in Toronto's

Wychwood Park area.

There Nelles organized two ground-breaking conferences and helped

publish a respected Canadian text on a syndrome that has really only

been on the health radar for less than two decades.

As a mother of two boys with it, she has become the foremost expert

and resource for other parents.

" Aspergers needn't be a bad thing but parents are usually devastated

when they hear the diagnosis and often don't want to tell the child, "

says Nelles, 44.

" If they don't tell, depression will happen. They are smart kids.

They can see they are not connecting. The depression derails them.

It's inevitable. Whether they are 16, 18, 23, it will happen. "

Asperger Syndrome was first included in the DSM-IV, the diagnostic

bible of the psychiatric community, only in 1994.

" It really is new, " says Stoddard, a social worker with a

practice specializing in Aspergers. " We are really struggling with

how to identify these kids and adults and to differentiate high-

functioning autism from Aspergers. It's still not clear. "

Eight years ago when Nelles was trying to get help for her eldest

son, Zack, now 16, things were positively murky.

" I had been looking for help since he was 2 1/2, " she recalls. She

had been told repeatedly she was a bad parent, a hysteric; she was

told her child – who would twirl on the floor for hours – was just

going through a phase.

" She was a mess and he was such a sad little guy, " recalls Carole

Nelles, Margot's mother.

Dr. Leon Sloman at the Centre for Addiction and Mental Health

diagnosed Zack with Asperger Syndrome.

When Nelles told her son that things would get easier now that they

understood the nature of the problem, the boy replied: " I always

thought I was a broken, rotten kid. " Those words propelled her into

action.Two weeks later, Nelles, at one time an associate television

producer, was back in Sloman's office with a plan for a registered

charitable organization and a board of directors. She had spent her

savings to start a website for the new organization. Almost

immediately the emails and phone calls started.

" There was a complete vacuum in terms of facilities for these

children, " Sloman says.

Nelles suggested group meetings so the children could interact

socially. That was the start of a flourishing program that takes

place at the Centre for Addiction and Mental Health every Wednesday

afternoon. While the children are meeting, so are their parents.

Nelles talks for at least two hours to every family who phones or

writes her. " Why should other people take all those years (I took) to

get on the right road? " she says.

Nelles and her mother, who helps co-ordinate the parents' groups,

scramble to pay the facilitators and the experts they bring in.

They've never received government money but many of their 200 members

do their own fundraising. Two years ago they received a windfall

private donation of $50,000.

Nelles' work is paying off for GTA kids with Aspergers.

The girl in the bathing suit is now wearing regular clothing. She has

a small gang of friends at school and plans to be a counsellor-in-

training at a camp this summer.

Leaton is starting a new school next month. It is for

children with Autism Spectrum Disorders. Next year, fingers crossed,

he will be enrolled in a special class for Asperger kids taught by a

teacher with Asperger Syndrome.

" Because he is bright they are telling us there is no reason he

couldn't go to university, " says Leaton.

" There is hope, " Nelles says. " Aspergers is not a dead-end sentence. "