Autism’s Social Barriers

The chances of detection and treatment depend on who you are and where you live

By PAULINE TAM, Published in The Ottawa Citizen

OTTAWA — It’s the unspoken rule about autism services that Anne Jovanovic knows all too well: Getting help for her son, Mica, requires her to wage a constant war with the gatekeepers of provincial programs.

Since Mica was diagnosed two years ago, Jovanovic has parsed government documents and doggedly pursued officials to press her case. In doing so, the federal public servant has established herself as a mother whose demands can’t be easily dismissed.

“My own mom has taught me that when I don’t get what I want, I find out who’s going to give it to me,” says Jovanovic. “I don’t take no for an answer.”

The result is that her five-year-old son has the type of provincial help that is the envy of many Ontario parents with children on the spectrum: $46,000 in lump-sum payments to cover some of the $73,000 annually for a private provider to give Mica therapy.

The funding gives families the flexibility and continuity that they look for in autism services, which is why it’s the preferred choice of many. But at any given time, only a handful get it.

The vast majority of families who are on the waiting list for Ontario’s autism intervention program have little choice but to accept intensive therapy for their children that’s delivered directly by one of nine regional providers, including the Children’s Hospital of Eastern Ontario.

Families view the service option as less desirable because of the seemingly arbitrary way by which children are discharged from the program. For children whose families are already paying for private therapy, the service option is yet another disruptive transition that their little ones don’t need.

Not every parent has the time, resources and tenacity to fight the way Jovanovic does. And it’s not just warrior moms that contribute to sharp imbalances in how autism services are distributed.A University of Pennsylvania study   has shown that compared to Caucasians, fewer ethnic or racial minorities are diagnosed with autism. That’s not because the prevalence rates are necessarily lower in those communities, experts say.

Rather, these groups face social barriers such as language, cultural stigma, lack of access to family doctors and a reluctance to challenge medical opinion. Such factors often prevent them from getting timely help for their children.

“Very often, depending on the culture, people take the word of their doctor at face value,” says Suzanne Lanthier, former executive director of Autism Speaks Canada, an advocacy group.
“We know that even in major metropolitan centres like Toronto, doctors are ignoring the early warning signs of autism. We need to do a better job of educating parents of different cultural backgrounds about the early signs.”

The uneven attempts at early detection has led to efforts by a handful of specialists to improve the medical care offered to all children suspected of having autism, regardless of where they live.

Dr. Wendy Roberts, a developmental pediatrician at Toronto’s Hospital for Sick Children, has worked in recent years to train more family physicians across the country to spot autism’s red flags. With autism rates continuing to soar, primary-care providers will inevitably see more children on the spectrum, requiring them to have the latest science-based tools to do early screening, says Roberts.

The disparities in care are a window into how social class — that elusive blend of income, education, occupation, postal code and cultural background — plays a powerful role in shaping the health and long-term outcomes of people on the spectrum.

Class informs people’s understanding and acceptance of autism, the level of support they get from their families, their relationships with doctors, teachers and therapists.

The more education and income parents have, the more likely they are to spot autism’s early signs, or press their doctors for a specialist referral. They are in the best position to pay out-of-pocket for their children to get a speedy diagnosis and early intervention, allowing them to bypass the long waits for publicly funded services.

In Ontario, children with autism can wait up to four years for a type of intensive therapy that, if given early enough, can change the course of their lives.

Educated and affluent families also tend to be more willing and able to participate in research studies that test experimental therapies and treatments. That’s especially true if they live near an autism research centre.

Indeed, access to services can vary greatly depending on where families live. Those in the country’s rural areas have the fewest options, since most autism services are in big cities.

Even a major centre like Ottawa lacks an autism research program, which deprives families of the chance to try promising new therapies and practices. It also robs pediatricians, psychiatrists, psychologists and other professionals who treat children on the spectrum of the opportunity to become leaders in their field.

And because autism services fall outside of the Canada Health Act, provincial governments don’t have an obligation to fund them, creating even greater divides between the haves and have-nots.

What few services are covered don’t always have a secure place in the system. This is particularly the case as the demand for autism services continues to outpace funding and provincial budgets are being squeezed.

“There’s a constant attempt to try to get you out of specialized services because it’s more expensive,” says Maureen Bennie, a Calgary mother of two teenagers with autism. From the day her son, Marc, 15, and daughter Julia, 13, were diagnosed as toddlers, Bennie has learned that parents who present themselves as formidable opponents fare best.

In her now-routine appearances before a provincial panel of nine experts, whose duty is to assess her children’s continued eligibility for autism-services funding, Bennie has learned how to be a strong advocate. In recent years, she has brought along extra supporters to help her make her case.

“These experts would be firing questions at you and you would have to prove that your child was worthy of having the services,” she says. “It’s very difficult to think clearly and come up with the arguments. It helps to have an extra set of eyes and ears.”

And because Bennie has two children on the spectrum, she spends twice the amount of time and energy defending their right to funding. “We’re well funded now, but that hasn’t been without a fight,” says Bennie, director of a company called Autism Awareness Centre Inc., which organizes conferences and sells books on autism.

Experts say as long as autism services continue to be excluded from the Canada Health Act, which governs federal health transfers to the provinces, governments will continue to grind along with chronically underfunded systems that pit families against one another.

“What we have to do is have a bigger debate about what we are doing with the $200 billion a year that we spend as a country on health,” says Herb Emery, a health economist at the University of Calgary, who’s studying ways to improve autism supports for Canadian families.

He proposes a national strategy, which could spell out what essential autism services look like. However, more funding for autism supports would inevitably mean capping funding increases for hospitals and doctors, says Emery.

“As long as we continue to keep funnelling money at an acute-care treatment system that is not set up for a condition like autism, we’re just going to have bigger problems going forward, as the costs of Medicare keeps rising and the needs of these families are increasingly unmet.”

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