Not like you think

Autism affects one in 137 births in Newfoundland and Labrador, according to the Janeway. (Stock photo.)

October is Autism Awareness Month and Newfoundland and Labrador has a higher rate of autism than the national average. Scientists still don’t understand what causes autism, and why doctors are diagnosing more children with the neurological disorder.

Whatever the cause, the effects for parents and children alike can cripple families and limit what an otherwise-promising child can accomplish in life.

Shawn Hayward talks to one St. John’s mother about her child’s experience with autism.

Georgina Cook says she and her family were shocked when they heard the diagnosis. Eric, her only child, was autistic.

Being a parent would not be how she imagined.

“And not just for the mom and dad, but grandmas and grandpas, aunts and uncles,” she says. “Especially with a young child, it’s really difficult.”

Autism affects a person’s ability to communicate and interact with their environment. Autistics often show repetitive behaviour, such as arranging objects in patterns, and extreme oversensitivity or lack of sensitivity to sound. Autistic people can become socially isolated and unable to find work as adults if the disorder goes untreated.

Perceiving differently
Cook and her husband first noticed their son was different when he wouldn’t respond to loud noises.

“We were walking up the street, and a fire engine went past,” she says. “I had to cover my ears, and he didn’t even notice it.”

At first Cook thought her two-year-old son might be hearing impaired, and brought him to a public health nurse. The nurse booked them an appointment with an autism specialist at the Janeway Children’s Hospital.

The waitlist for a diagnostic examination is usually 10 to 14 months, but Cook was lucky. She had brought Eric to a doctor who knew a specialist in child development. After two months on the waitlist, that doctor got her an appointment when another family cancelled.

Early diagnosis is important for the future of an autistic child because if treatment starts he or she has a better chance to overcome the symptoms and lead a normal life.

Eric soon began government-sponsored therapy.

Parents need accounting skills
Parents of autistic children in Newfoundland and Labrador have to employ therapists themselves. The provincial government pays the parents, but parents are responsible for filing pension forms, employment insurance, and taxes with the federal government.

Cook, who had been in school to become an accountant, had experience with payroll, but she says most other parents have to learn skills normally required of small business owners.

“For those people with no idea about taxes and looking after a business, it can be very daunting,” says Cook. “A family just found out their child has a neurological disorder, and to nearly have to start their own small business? It’s a real challenge for them.”

Government-funded therapy only lasts until the age of six in Newfoundland and Labrador. Cook took a therapy course so she could do it herself, which put her education as an accountant on hold in order to spend more time with her son.

“I stayed home to take care of our son and give him the best I could possibly give him,” she says.

Structure and practice
Eric takes applied behavioural analysis (ABA) therapy, which uses flash cards to help autistic children interpret the world around them. The child is asked to repeat phrases they’d use in daily life, and indentify things they see with categories. The therapist asks the child to point to a card showing something you’d eat, for example, and the child would point to the picture of a sandwich.

Now, after seven years of therapy, Cook says her son’s verbal and social skills have improved to the point where most people wouldn’t realize he was autistic.

“If you met my son and extended your hand, he should shake it and say ‘hi,’” she says. “Other children would probably back away from you. He’s not as interactive as his peers, but if they come up to him, he will talk to them about different things, and interact that way.”

Many autistic children show an above average ability to memorize facts. Cook says her son is very interested in naval ships, and can see just the outline of one and tell you its name and country.

“It’s amazing how much information he has in his brain,” she says.

Autistic trend
Eric is one of 190,000 Canadian children with the disorder. The Janeway Children’s Hospital estimates one in 137 children have autism here in the province.

Scientists suspect autism may be caused by genetic predisposition triggered by the pregnant mother’s environment—but they don’t know the exact mechanism.

Trish Williams, executive director of the Autism Society of Newfoundland and Labrador, says parents in the province are lucky to have short waitlists for treatment, but they must wait longer for diagnosis than those in other parts of Canada.

If autism is noticed early, the child has a better chance to learn along with other kids their age, and to compete academically.

If it’s not, the prognosis is much worse.

“We have children with autism who, because of their behavioural difficulties, can only attend school for 45 minutes a day,” says Williams. “Their right to an education is being seriously limited because you can imagine: you’re not learning very much in 45 minutes.”

Cook’s son, now 11, is in a Grade 6 class, and gets help from a challenging needs teacher. Cook says she’s hopeful about Eric’s future, based on how much his language and interaction has improved.

“At four years old, he said his first word: ‘mom,’” she says. “At 11, now he’s talking in full sentences and has great comprehension. Seeing how far he’s come, I fully expect him to get a job and do something that he enjoys.”