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Learning to live with autism

When Jenny and Brian Purvey would call their one-year-old son Tristeen, he would not come. Nor did he follow simple instructions. It was as if he was ignoring them. The Purveys had daughter Harlee two years before Tristeen, and when she was his age, she came when called.

"I knew something was wrong but I didn't know what," Mrs. Purvey said. " We took him to the Child Development Project. There was no diagnosis. They said he was delayed."

But Tristeen was autistic. The diagnosis didn't come until he was more than two years old.

"It was a friend I've had since I was five years old, who came to me one day and said she saw a TV show where there was a boy who looked just like Tristeen," Mrs. Purvey said. "She said he just sat in his high chair and did nothing. Just like Tristeen would. She said it was called autism and we should get Tristeen checked for it."

The Purveys followed the advice and asked his paediatrician for a referral. Tristeen sat on a waiting list for six months before he was seen and tested at the Kennedy Krieger Institute in Baltimore, Maryland.

"They (the Institute) gave us a full report with a list of recommended programmes and therapies. That's all well and good, but there are no programmes and no therapist in Bermuda for autism."

Mrs. Purvey said when they returned from Baltimore, they searched furiously for information.

"Everyone talked about this one lady who had three autistic children. I searched in the phone book and finally found Tricia Crowe and the Bermuda autism support group. That's how I learned much of what I know now."

Ms Crowe put Mrs. Purvey in touch with Establishing Operations, a consultancy group specialising in teaching autistic children. Mrs. Purvey retained their services.

"In January they came and taught my mother and I in detail," she said. "The programme we have implemented is verbal applied behavioural analysis."

The programme components are specific to Tristeen's needs. When the consultant met with them a lot of data was compiled.

"We would count things like how many times he asks for something," she said.

While the process might seem tedious the results have been tremendous. Mrs. Purvey and her mother started Tristeen on the programme this January and saw marked improvements almost immediately.

"Within three weeks he started talking," she said. "We were amazed and surprised to find he knew things we didn't realise he knew."

But to ensure he gets the level of support he needs at this stage, the Purveys have had to employ a full-time therapist.

"No one in Bermuda wanted the job. We advertised here and abroad and finally found Leanne in Canada," she said.

Leanne Reid is Tristeen's therapist and works a full weekday shift with him. She continues to compile data on his behaviour and each week the results are emailed to the consultant at Establishing Operations. Each month a DVD showing footage of Tristan working with Leanne is also sent. The consultant reviews the information.

"She (the consultant) let's us know if we can move ahead and implement a new programme," Mrs. Purvey said. "Every three months she flies down and does a day of consulting with us also."

So far Tristeen is "flying through the programme", his mother said. "He can count and knows his colours which is more than some three-year-olds, but he is still behind." She said retaining a specialised therapist and the consultant will be ongoing until he doesn't need them.

"He is on the milder end of the scale for autism and everyone believes that for him this (independence) is a real possibility," she said.