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Autism: Why early treatment is the key

THINK of autism and many of us think immediately of the movie Rain Man. Dustin Hoffman's portrayal of an autistic man with a gift for numbers and total recall earned him an Oscar and raised awareness of a condition that had been a complete mystery to many.

Raymond Babbitt highlighted one aspect of autism, but Hoffman's character was by no means typical of the condition.

Most people still know little about autism, despite its prevalence. One in 250 children born is autistic, according to the latest research carried out by the Autism Society of America.

Statistically, that means there could be 60 to 80 autistic children under 18 in Bermuda. Around 30 have been diagnosed, as well as at least four adults, but it is believed that many more are going through life without treatment, because of the widespread lack of awareness of the condition and the fact that there is no one test to diagnose it.

And in some cases, it is thought that families have avoided seeking treatment through fear of facing up to the fact that something is wrong, sometimes through shame.

But the fact is that if autistics are diagnosed and treated, particularly at a young age, they can go on to lead successful lives. Early treatment is the key. That is one of the points that the Bermuda Autism Support and Education Society is trying to get across this month, which is Autism Awareness Month.

TRICIA Crow has three autistic children and says she fully expects them all to go to university, get jobs and to be able to live normal lives.

She said it was true that seven-year-old Geoffrey and six-year-old twins Richard and Michael were sometimes hard work, but that seeing them reach the kind of milestones that parents would normally take for granted of their children had been richly rewarding.

"When it takes five years to hear your child call you 'Mummy', it means a lot more when you hear it," said Mrs. Crow.

"It has been a really interesting experience, seeing how they think and work and how quickly they can learn.

"They will sit in a corner alone and play, but they don't learn that way. You have to work at it. Of course it is very tiring and very hard and it wears on you.

"But every little step they make seems like a huge step, so it is very rewarding. Progress that parents would normally take for granted means a lot more.

"I know a woman (Holly Kibbe) from the US who works with those with autism and she is constantly working hard and travelling. When you ask her why she does it, she says that when she goes to someone's home and makes a difference and sees the gratitude in parents' eyes, it just makes her want to do more."

Difficulty with communication is one of many symptoms that show up with autistic children. A lack of eye contact and no pointing, waving or grasping in the first 12 months are signs. A failure to say single words by the age of 16 months is another.

These signs do not necessarily indicate a child has autism and checks by a team that may comprise a neurologist, psychologist, paediatrician, speech therapist and a learning consultant could be necessary to determine whether autism is the problem.

Autism is four times more likely to affect boys than girls, but autistic girls are likely to be more severe cases.

Mrs. Crow and her family came to Bermuda from Canada five years ago. They were still in Canada when they feared that something was amiss with their first child. They sought medical advice and came face to face with the lack of awareness about autism.

"Geoffrey was 14 months old when we started thinking something was wrong," said Mrs. Crow. "He would stack things and line things up. But more than anything it was the screaming. He would scream for long periods at a pitch that could break glass.

"We took him to a doctor and he said that Geoffrey would talk when he was ready.

"With the twins, they were developing perfectly normally at first. They would make eye contact and point at things, but within a week of them turning 18 months, they turned and started showing some aggressive behaviour."

It was after they had moved to Bermuda that they first discovered that the children were autistic and immediately began to give them all the necessary treatment.

Autism shows itself in different ways as children grow up. Some of these traits are present:

Prefers to be alone, aloof manner and difficulty mixing with others.

Little or no eye contact and may not want to cuddle or be cuddled.

Tantrums and noticeable physical over-activity or under-activity.

Over-sensitivity or under-sensitivity to pain.

Aggressive or self-injurious behaviour.

Unresponsive to normal teaching methods and not responsive to verbal cues, acting as if deaf although hearing tests are in the normal range.

The cause of autism is a mystery, though it is generally accepted that it comes with abnormality in brain function, and there is no cure.

However, if the condition is diagnosed early, research has shown that life is likely to turn out considerably better. And many autistics, like Raymond Babbitt, have a gift for numbers.

"Some are very good workers, good at math and excellent with computers," said Mrs. Crow. "And it's interesting that around 96 per cent of the fathers of autistic children do very technical jobs like engineering or working with computers.

"Teaching autistic children presents special challenges. They have a lot of difficulty with abstract concepts, but they like visual aids. For example, if you say three minus two is one, they will understand it if you show them a pile of three blocks and take two of them away.

"Autistic people don't learn in the conventional way. We need to teach them in a way they can learn. So really, autism is our problem, not theirs."

Education is one reason why it is so important to diagnose autism early.

"You get a window up to the age of seven when autistic children can learn quickly. After that it gets more difficult," said Mrs. Crow.

"Autism is a spectrum disorder and you get varying degrees. You have those who are low functioning and those who are high funtioning. And if you give them the necessary help early in life, they have a better chance of being at the high-functioning end of the range."

Ideally, autisitic children needed 30 to 40 hours of treatment with different specialists, including speech, occupational and physical therapists and a development pediatrician, Mrs. Crow added. But in Bermuda, it was difficult to obtain that amount of treatment.

"It depends on the severity of the autism, how often they can study with other kids in a regular classroom," said Mrs. Crow. "It is good to allow them to mix with other children at playtime. And with subjects such as math and spelling, they can usually join in with others."

Mrs. Crow is a founder member of the Bermuda Autism Support and Education Society (BASE), a charity set up only two years ago.

"It started as an autism support group," said Mrs. Crow. "There were three of us - myself, Debbie Larcher and Thea Furbert and soon we felt we needed to do more.

"It was difficult to get the right therapies here, because people didn't understand why they were necessary. So we decided we had to make people understand what autism is and we renamed the group BASE.

"It wasn't that people didn't want to know more about autism, it was that the opportunities weren't there. The very first workshop we held attracted more than 100 people. There were doctors, teachers, nurses, paediatricians, parents, grandparents and even a 93-year-old lady who came because it sounded interesting.

"Our main aims were making people more aware of autism and education. Over the past two years we have brought a lot of prominent people to the island for training, like Dr. Vincent Carbone, who is in demand around the world. When we advertised him, we had people from the US calling in about it.

"And we made it affordable. A course that would have cost $400 in the US, we offered for $75 including lunch. We get very good financial support and more and more, we are getting Department of Health and Education officials on board.

"We started off with 20 members in 2001 and now we've got 120 members, mostly professionals looking to benefit from what we can offer. We have a $4,000 library on autism which we are building up, as there were no books on autism in the libraries here. Education is our main focus." Rain Man had done wonders for raising the global awareness of autism, said Mrs. Crow.

"Rain Man represented a very small section of what autism is - there are some people like him but not many - but the film certainly brought out the word," she said.

"A movie starring Tom Cruise and Dustin Hoffman is a great way of bringing something to the forefront."

Mrs. Crow said awareness was so important, not only for parents who might suspect something was wrong with their children, but also for those encountering autistics in everyday life. Autistics did not learn social skills in the same way that most people did, she said, and the concept of personal space was one they particularly struggled with. People aware of autism would be less likely to see their behaviour as rude and more likely to be helpful and understanding.

BASE is promoting several events to mark Autism Awareness Month. Today is Denim Day, when workers contribute money to dress casually at work.

Next week there will be three seminars on Monday, Tuesday and Wednesday evenings at the Bermuda Underwater Exploration Institute, featuring visiting speakers from Connecticut, Michael Powers and Kristin Powers.

The first addresses the subject of assessment and treatment of challenging behaviour in autistic children. Tuesday's seminar will be on sensory processing and registration of autistics, while the third seminar is on education of high-functioning autistics.

Each seminar will run from 6.30 p.m. to 9.30 p.m., costing BASE members $5 each and non-members $15 each.

The month will end with Autism Awareness Tag Day on April 30. Autism Awareness ribbons, emblazoned with a jigsaw puzzle pattern of many colours to represent the mystery and complexity of autism, as well as the diversity of the people affected by it, will be worn by BASE supporters throughout April.

BASE can be contacted by e-mail at basebdayahoo.com and anyone wanting more information can contact Tricia Crow on 293-5333, Paul Lambert at 238-2892 or Thea Furbert on 236-8307.