PROGRAMMING NEEDED TO HELP CHILDREN WITH AUTISM: EXPERTS

There's a statistic cited on websites and in blogs: 78 per cent. That's the percentage of autistic children who will develop a mental health disorder in their lifetimes, according to a study published by the University of British Columbia's department of psychology and the A.J. Drexel Autism Institute at Drexel University.

But it doesn't have to be this way, say experts and parents interviewed for this story. That statistic does not need to become a reality if there are significant changes to the services provided and how they are provided.

WHAT CAN BE DONE?

Bruce Mcintosh, a Mississauga father of two children with autism, says the wait-list for core autistic services — which is currently at an estimated 60,000 in Ontario — needs to be lowered. The current wait-list for these services can last anywhere up to two years, depending on where you live in the province.

Core services refers to the essential programming for autistic children, namely applied behaviour analysis (ABA), occupational therapy (OT), and speech therapy (ST).

Mcintosh faced a threeyear wait time for his thenthree-year-old son with autism, and rather than wait, he remortgaged his and his wife's house, and sold one of their cars.

"We did everything that we could think of that would allow us to pay for our son's therapy," he said. "But I said, it's the top priority because after 40 years of research, we know that this (is) what works ... We almost went bankrupt."

The general consensus on autism is that early intervention in children as young as two or three with some sort of therapy is best. Mcintosh said the therapies he invested in have taught his son how to speak, curtail his aggressive behaviours and stopped him from running away when he's scared.

Now, his 23-year old son lives semi-independently thanks to community living, and has a job. "He wasn't talking when he was five years old," said Mcintosh, founder and president of the Ontario Autism Coalition.

"I was really concerned about where he would be when he was an adult. Now he's happy and I'm really proud of him. He (has) done fantastically well, but without the therapy, he wouldn't have been able to do that."

Because autism is a spectrum and manifests differently depending on the individual, with different behaviours and challenges, there is no one type of therapy that works for all.

Nevertheless, early intervention programs also include family training, speech therapy, hearing impairment services, physical therapy, and nutrition services.

CARE FOR CAREGIVERS

One of the challenges in supporting autistic children is that their needs tend not to be seen holistically, said Kira Vimalakanthan, clinical psychologist and director of research for mental health services at the South Asian Autism Awareness Centre (SAAAC).

For example, it is known that the health of the caregiver and the broader family environment will impact the health of the child with autism, but this information is not always considered in informing, or providing funding for, their support needs.

"The mental health of individuals is inherently connected to the mental health of the family," explained Vimalakanthan. "Many autistic individuals depend on their parent caregivers much more than others might. I've seen challenging family dynamics that are blamed on the autistic individual when they exhibit challenging behaviours and a decline in functioning. Caregiver mental health is vital."

Caregiving for a child with autism is often complicated by the lack of funds and services.

"This is an incredibly stressed out and underserviced population," Vimalakanthan said.

SAAAC offers an eightweek skills-based support group available to any parent or caregiver of an child with autism in the province.

LACK OF ADEQUATE TRAINING

Once the mental health condition has arisen, it can be hard to find the people with the right training to deal with the issues, explained Vimalakanthan.

Mental health providers rarely have experience in dealing with autism, said Vimalakanthan.

"So families seeking services for their autistic child or autistic adults seeking a service might be turned away or might have a hard time finding people who are experienced (in) treating their mental health concern with the appropriate modifications to treatment that are needed (for autism)," Vimalakanthan said.

"And on the other side, people who have training with autism, don't have mental health expertise in order to be able to support these individuals sufficiently."

INCLUDE AUTISM THERAPIES UNDER THE CANADA HEALTH ACT

For several years, there has been a growing movement among the parents of children with autism to have autism listed under the Canada Health Act, explained Carly Eby, founder and executive director of the Autism Centre of Toronto.

This would mean a national policy on autism, and would ensure that the necessary therapies are funded by medicare.

Currently, there is a hodgepodge of services that are inconsistent depending on where you live in the province or the nation.

"If autism were recognized under the Canada Health Act, it would allow provinces to put healthcare funds towards treatment for medical conditions related to a person's autism diagnosis," Eby said.

STORY BEHIND THE STORY: When we heard that those with autism often lived with mental health issues, we wondered what could be done to improve the situation, and what needs to change.