Autism: Piecing it together

[Guest guest]

http://ottawasun.com/News/Columnists/Sherring_/2007/12/02/4701885-sun.html

Sun, December 2, 2007

Autism: Piecing it together

By SUSAN SHERRING

The headline screams out -- Fighting for My Autistic Son.

And there, on the front of a recent People magazine, is the beautiful and blond McCarthy, promising to tell readers about her son Evan's surprising breakthrough and how funnyman Jim Carrey helped her heal. Heady, eye-catching stuff.

Doesn't hurt that son Evan is also picture perfect with his blond curls and blue eyes.

Like other parents, McCarthy found herself surfing the Internet in search for help after her son's "devastating diagnosis."

Shortly afterward, she began a wheat and dairy free diet for son Evan, telling People she almost immediately noticed a positive change in his behaviour and his speech.

Problem is, there's no good scientific evidence to prove a relationship between diet and improved behaviour for autistics.

It's all anecdotal, though hundreds of parents swear by its effectiveness. (Research is now ongoing at the University of Western Ontario looking for a link between food and autism.)

But, for now, in the world of autism, it's just one of the many unknowns. Diagnosis isn't easy. There's no simple blood test, but a complex assessment looking at skills in three basic areas: Communications, socialization and behaviour.

In many cases, with treatment, behavioural problems associated with autism can be modified, but the mainstream medical community will tell you it can't be cured.

In Canada, there's still no national strategy, no uniform level of care. And while resource groups exist, families who receive a diagnosis of autism for their precious child often feel abandoned by the system, making their way through a maze of information and paperwork, having to decide for themselves what treatment route to take and how to cope with an often out-of-control child.

In the summer of 2006, when Tara Schuessler first heard her three-and-a-half year old daughter Kaelen was autistic, her world immediately changed.

"We sort of knew she had autism before we had the diagnosis. All the signs were there. So it wasn't a shock, but it was still devastating," Schuessler said.

"I guess before I did the research, the word autism was very startling."

For many people, the only understanding they have of autism comes from the movie Rainman, portrayed by Hoffman.

"Then (with research), we realized what a vast spectrum autism really was. There's such a range and there's so much complicated terminology. It's so complicated.

"I find myself educating my family and friends," Schuessler said.

She and husband Mark settled on Applied Behaviour Application (ABA) treatment, the most commonly accepted treatment.

"ABA, in my opinion, is the only scientific, evidence-based treatment that works," she said. Rather than let Kaelan get worse while languishing on a waiting list, they paid for private therapy.

"When I reflect back, and l look at other families who have it worse, my husband and I knew the right steps to take. We knew what we had to," she said, adding they can only afford nine hours of therapy a week, the minimum recommended.

"But she's responded, and I know it doesn't work for everybody. We're going to do private therapy for as long as we can."

Kaelen, now four-and-a-half, is in a regular school with a support worker helping out.

"She now speaks in full sentences. She's quite social, doing well. We're really optimistic, though we try not to think too long term, not too far in advance," she said.

Many mysteries remain.

The biggest unknown is the cause and the cure.

The medical community doesn't have an answer for either one.

Another of the great unknowns?

While many in the field believe autism is on the rise, reaching epidemic proportions, that too has a big question mark over it.

Has it really reached a crisis situation?

The medical community isn't in agreement whether there are actually more people with autism or if it's simply being diagnosed more. That the definition of autism is more inclusive and better understood.

Another controversy? Childhood vaccines. While the scientific community has studied a connection between vaccines and autism, and ruled it out as a cause, some parents still can't help but believe there's a connection between the timing of childhood vaccines and the change in their child.

While struggling with the diagnosis, and learning to cope with a child with autism, many parents find themselves also fighting the system, lobbying to bring attention -- and increased funding and research -- to the issue of ASD.

It appears to be paying off.

After years of languishing on the backburner, autism is finally getting some of the attention it deserves.

Researchers at the Offord Centre for Child Studies heralded a breakthrough with an international consortium in the discovery of one gene and a previously unidentified region of another chromosome as the location of another gene that may contribute to a child's chances of having autism.

The findings were based on genetic samples from nearly 1,200 families with two or more children who have autism, and it's a study Canadians took part in.

The work is considered a major breakthrough to better understanding the disorder and improving diagnosis and treatment.

It's hoped the new information in hand with researchers are one step closer to finding the specific genes that cause autism.

But with words like epidemic and crisis tossed about, the issue is also finally getting the ear of some sympathetic politicians.

Case in point? In the recent provincial election, the New Democratics and the Progressive Conservatives both targeted autism as an important election issue, both featuring election ads addressing the importance of increased funding for autistic children.

This past summer, it was revealed the Ontario government had spent more than $2.4 million in taxpayer dollars on a seven-year court battle just to fight parents of autistic children.

In Ottawa, Tory MPP McLeod has also played a province-wide role in getting autism front and centre .

After she defeated New Democrat opponent Laurel Gibbons in a byelection last year, she asked Gibbons to join forces with her to push for change.

Gibbons, who has an autistic child, has used elections to push forward the issue of increased funding and research for autism.

"This shouldn't be about party politics," said McLeod. "I was very involved in writing my party's platform and autism and much of it came from Laurel."

As documented in a recent Senate committee report, things are changing, albeit slowly.

"A generation ago, the vast majority of the people with autism were eventually placed in institutions, while many others were misdiagnosed," the report, released in March, reads.

The people who help families also see more attention given to the issue.

Reisch is the charity co-ordinator for Children at Risk, a support group for families with autism. They try to fill in where they see a void, like its sibling support group, which helps brothers and sisters of autistic kids.

"It's all parent-power," said Reisch. "We screamed and we yelled and we launched court cases. If we sit back, nothing happens. But it's extremely exhausting, and a lot of people get burned out, a lot of marriages fail," she said.

Her son Ian, about to turn 15, was diagnosed with autism when he was 18 months.

"My child is 24/7, he can't be left alone," adding he's closer in development to a five or six-year-old. "He has no sense of danger. I describe him as a locomotive without the engineer. He has the physical ability to do anything, but not the cognitive sense, and now that he doubles and triples in age, it's extremely wearing," she said.

But while she sees change, she doesn't think most people really have any understanding about what autism really means.

"Unless your living with it, or know someone who's living with it, it's hard to understand. It's a cognitive disability and it's scary if you don't understand it. You can't see it like you can a physical disability."

"Our kids don't look disabled, but their behaviour is so off the wall."

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WHAT IS AUTISM?

Autism, or Autism Spectrum Disorder as it's now called, is described as a neurological disorder which causes developmental disability. The spectrum refers to the severity or developmental impairment -- which of course in turn -- also affects the level of functioning.

ASD results in problems in communication and social interaction, along with behaviour problems.

In extreme cases, there can be out-of-control temper tantrums, throwing of objects, angry outbursts and absolute meltdowns.

The symptoms vary significantly from child to child. No two autistic children are alike. Depending on where they are on the Autism Spectrum, some can't communicate with others or be left alone. Others -- like those with Asperger's -- make it to university and hold down jobs.

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AUTISM REPORT

What a recent Senate report says on autism

It is unclear whether the actual prevalence of ASD is changing over time, but the number of diagnoses has been on the rise. Currently, the rate often cited for ASD in Canada is six per 1,000, or one in 166 and is consistently detected three to four times more often in boys than in girls. This translates to about 48,000 autistic children aged zero to 19 and 144,000 adults within Canada.