Families of children with autism under 'severe stress': Report

Families of children with autism are under "severe stress" as they juggle advocating for their children, arranging treatment and tending to their own busy lives, according to a new study by the Laurier Autism Research Consortium.

"Many parents quit or downgrade their jobs to care for their children," said co-author Janet McLaughlin in a news release. "Other family members often work extra hours or take on weekend or evening jobs to pay for the therapies their children need."

And the uncertainty, is unbearable, she said.

"When you can't make predictable choices that throws people into chaos," McLaughlin, who is the mother of a child with autism, told CBC Kitchener-Waterloo.

"Even within my short period of dealing with this, my son is now seven, I've already dealt twice with the shock and stress of having been told that his supports are about to be removed — supports that I was expecting and counting on."

Needs-based program necessary?

McLaughlin and fellow researcher Margaret Schneider, based out of Wilfrid Laurier University in Waterloo, Ont., surveyed more than 700 families with one or more children on the autism spectrum in the summer of 2018.

The survey included 179 questions with both closed and open-ended respondents.

The study only involved parents and primary caregivers of children and youth with autism, and the researchers noted the sample represented "more privileged families."

The survey was also only conducted in English and there were few Indigenous or new immigrant families that took part.

It was conducted one year into a new program devised by the former Liberal provincial government and the same summer as the Progressive Conservatives were elected to form the provincial government and moved to evaluate and redesign the way autism services are delivered in Ontario.

The pair's main recommendation is that families need autism services tailored to the individual needs of each child 

"Various people have made the argument that this would cost us billions of dollars," McLaughlin said. "It's really important for people to realize that by opening up to a needs-based system, it doesn't mean every family is going to take home $60,000 or $80,000 a year. In fact, if we properly support children it will mean overall costs will go down over time  — and that's what many studies have shown."

Province changes funding

The Ontario Government's new autism program, under the Progressive Conservative government, has been a point of controversy as Minister of Children, Community and Social Services Lisa MacLeod has tried to cut down the 23,000-person wait list. 

The government's initial approach was to provide families with direct funding for treatment, capped at $20,000 for children under six and $5,000 a year up to age 18 — based on a sliding income scale. Households with incomes over $250,000 would be ineligible. 

The money would go directly to families, instead of service providers who deliver the programming.

After backlash, that plan was tweaked in March; no change was made to the allowances but the tie to family income was eliminated so all families with a child with autism would be eligible for funding, MacLeod said.

Speech language pathology, physiotherapy and occupational therapy were also added to the list of provincially-funded services. The government has said those changes will cost the Ontario government an additional $300 million.

At the same time, the government also promised there would be a needs-based element added to the funding model.

Exactly how that will work is being determined by an expert panel appointed by the government — which includes McLaughlin.

Unimaginable pressure: MPP Amy Fee 

Amy Fee, the PC MPP for Kitchener South-Hespeler and MacLeod's parliamentary assistant with a focus on children and autism, said as a parent of two children with autism, she sympathizes with the families who took part in the study.

"The pressure that having a child with autism or any special needs can put on a family is unimaginable," she told CBC News. "You're thrown into something you never expect to have to deal with as a family and just trying to come to terms with the emotions of having a child that needs extra supports, then the fears of what does the rest of my child's life look like?"

She said the day-to-day life can be a roller coaster for many families and sometimes people outside the family unit, like extended family, friends and co-workers, just don't get it.

Fee says she fought to have McLaughlin on the province's advisory panel because her expertise is "very vital for us as a province but also for us as a region, to be able to bring back what's going on in this region to the panel at the provincial level."