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Searching for solutions

by Archives March 16, 2005

HAMILTON (CUP) — Daniel Tammet can recite pi to 22,514 places.

He’s an autistic savant, one of a small handful of people with incredible mental abilities. He’s a real-life Rainman, and he represents the public perception of a little known — and misunderstood — disorder.

The diagnosis of childhood autism began in the early 1940s. Around the same time, Asperger’s was first diagnosed in Germany. These are just two of the pervasive developmental disorders linked by impaired social and communication skills and repetitive actions. Usually, these disorders are referred to collectively as autism spectrum disorders.

ASD occurs more commonly in children than Down’s syndrome or diabetes, but has a much lower profile. The perception that autistics all act like Dustin Hoffman in Rainman is misleading.

“I think traditionally you hear the word autism and you think of Rainman. Although (Rainman) had a significant splinter skill, he was quite disabled,” said Rick Ludkin, the area program manager at Woodview Manor. However, he noted, “over the past 10 to 15 years there has been a broadening of the whole definition of ASD.”

Woodview Manor is an assisted-living facility in Hamilton for people with moderate- to high-functioning autism or Asperger’s.

Dora Cheung, who graduated from McMaster University with a degree in psychology, has worked at Woodview Manor for the last two and a half years.

“It’s interesting work,” said Cheung. “Working here, you learn a lot of patience. It’s a lot different reading about (a specific disorder) and then actually coming face-to-face with a person with that disorder.”

Cheung pointed out that the skills she thinks of as common sense can be difficult to learn for people with autism. She says she had to relearn certain skills so she could teach them to others.

“The job is great. It’s really fulfilling to come to work and help people,” said Cheung. “It’s rewarding to see people in the community and the skills they’ve learned, and you’ve played a small part in it.”

Cheung noted that the level at which an autistic person functions can vary widely. Cheung mostly works with those who are moderate or high functioning.

“They go to the Y, they have jobs, they take the bus, they’re out in the community,” said Cheung. “A lot of our guys are successful.”

Psychology is not the only discipline that studies autism. Many genetic researchers are studying the connection between genes and the disorder.

However, a McMaster psychologist has gotten the most attention recently in the field of autism.

Melissa Rutherford met a mother of twins at a banquet two years ago. The mother had kept a meticulous journal of the first years of the twins’ lives.

“From birth to six months, the two twins looked similar — they developed the same socially — but from six to 12 months, we started to see a difference,” said Rutherford.

The difference between the two twins (one boy and one girl) became more pronounced as they got older. The male twin was eventually diagnosed with autism at age three.

The diary is so remarkable because the progress of an autistic child was recorded before a diagnosis was made, and the female child acted as a control group.

“I knew there was potential there (in the diaries). It’s hard to get a description of social development before one or two years, and if you want to do research on a one-year-old with autism, you can’t, because there are no one-year-olds diagnosed with autism,” said Rutherford.

Because autism is such a complex disease, psychologists like Rutherford get information from their colleagues in other disciplines.

“A lot of the clues in autism come from genetics information. The more you look at autism, the more confusing it gets,” said Rutherford. “It’s a very prevalent disorder, but we don’t know the cause of it, and we don’t have a cure.”

Rutherford also pointed out that autism is still largely a mystery, so researchers have no idea how it starts.

Currently, Rutherford is following up on the diary by looking at children with autism to determine what predictors exist in very young children.

The connection between autism and genes means that researchers are looking at younger siblings of children diagnosed with autism to watch for the possible onset of the disorder.

The sooner an autism diagnosis can be made, the better. Early intervention with intensive behavioural therapy is usually recommended. With therapy, some children with autism can attend regular schools.

In the U.S. last year, 27 per cent of children with autism were in a public school classroom. A decade before, only 11 per cent of the 22,664 autistic children were in classrooms.

A large part of this jump is the number of higher-functioning autistic children being diagnosed. However, intensive therapy is helping them stay in the classroom longer.

As students reach middle-school age, however, they have a hard time keeping pace with their peers. Although many people with ASD have average or above-average IQs, the nuances of a conversation, like understanding sarcasm or interpreting body language, can be incredibly difficult.

Although most autism experts recommend starting behavioural therapy as early as possible, Rick Ludkin admits that Woodview Manor is working backwards.

Ludkin started the Woodview Manor program in 1988. Everyone who lives at the Manor, in either the main teaching unit or one of four semi-independent units, is over 18.

“We started the program for adults, but we also thought we should start the process earlier, so we now have groups with teens,” said Ludkin.

According to Ludkin, one of the great disadvantages to the autistic people he works with is the “high-functioning” label. Individuals who are considered high functioning get less funding because there is an assumption they need little assistance.

“In fact, it’s just the opposite,” said Ludkin. “Without funding, the quality of life for high-functioning autistics is not particularly good.”

The high-functioning designation means that an individual has an IQ over 70 and basic language skills.

Frustration is always present for those who deal with autism. A shortage of funding and lack of support plague those with the disorder.

“Parents of these folks have been advocating on their behalf since they were infants, and it’s been one long struggle. It’s been very, very difficult for a lot of them,” said Ludkin. “Twenty years ago, autism was still chalked up to poor parenting.”

Ludkin has been struggling for years with an unwieldy aid-distribution system. Like many social services, he finds he has to scramble for a dwindling amount of funding that has been frozen since 1993. Woodview Manor is given enough money to support 15 people, but they

have helped as many as 80 people at one time.

For those who work with autistic people, one of the greatest rewards can be seeing the people they work with making progress. However, both Cheung and Ludkin are careful not to take too much credit for the success of the Manor’s residents.

“The triad of impairments that make up the diagnosis of ASD are part and parcel of (high-functioning autistics’) lives,” said Ludkin. (But) we’ve been reasonably successful in terms of helping a good number of people.”

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