The rise of autism poses one of the biggest current challenges facing North American families and school systems everywhere. The latest education jurisdiction to step into the breach was the Canadian province of Ontario. In response to the mounting pressures for expanding services, the Ontario government announced a new $333 million, five-year autism program initiative packaged as good news.
Instead of being welcomed by parents of autistic kids, the move sparked a firestorm of provincial and local community protests. Hundreds of parents descended upon the Ontario Legislature to protest on April 12 and, three days later, local groups carrying signs reading “Autism Does Not End at Age Five” rallied in more than half a dozen smaller centres, including Ottawa, Kitchener, Aurora, Sudbury, Mississauga,and Waterdown, near Hamilton.
Young children with autism spectrum disorder in Ontario were promised shorter wait times for intensive therapy covered by the province, but those ages 5 and up will no longer be eligible as part of a revamped Ontario system. The New Ontario program aimed to cut wait times in half for Intensive Behavioural Intervention (IBI) within two years, and then down to six months by 2021, according to the Ministry of Children and Youth Services.
The decision meant that 2,200 children ages 2 to 4 would be removed from wait lists over the next two years, while some 1,378 in treatment after age five, over half of the 2,000 currently served, would be transitioned out with an $8,000 grant intended to subsidize the less intensive Applied Behaviour Analysis (ABA) therapy. Denying access to children over age five left many near desperate parents completely “heartbroken” and some totally outraged over being denied the needed services.
Ontario’s Minister of Children and Youth Services, Tracy MacCharles, broke into tears when faced with the barrage of opposition, and Irwin Elman, the provincial Child and Youth Advocate, sided with the aggrieved parents, urging the government to postpone its plans. “The debate is not about waitlists,” He added. “It’s about children. It’s about people, and it is about their possibility and futures.”
The Canadian province of Alberta stands out as an exception. Since the mid-1990s, Alberta Education has embraced more school choice, especially in special education services. Alberta’s direct funding system provides grant support for kids with developmental disabilities, based on each child’s needs, to pay for whatever services suit them best. Options include special needs schools, a range of behavioural, speech and occupational therapies, respite care, camps, and personal support workers to accompany children to recreational activities.
Children are assessed through the Family Support for Children with Disabilities program, which determines the amount. Wait times are minimal. Parents have choices, unlike in Ontario, where IBI is the only sustained treatment covered by the province. While Nova Scotia has a Tuition Support Program, it is limited to children with diagnosed SLD attending three designated schools enrolling fewer than 230 students. Financial support to attend specialized programs is extremely rare elsewhere in Canada.
One example of such a school program is Janus Academy, a Calgary, Alberta, school for children with autism. It’s a specialized private school where parents pay $12,000 in tuition each year for a program that costs $40,000 per student to operate. In other words, providing access to a specialized IBI program at a quarter of what parents would pay in Ontario.
Teaching autistic children using IBI can be expensive, but it can produce noticeable gains., especially if started in the early years. The Alberta government underwrites most of the difference, and the school also fundraises to support the tuition subsidies. “We don’t have to fight the schools (for what the children need), they’re partners with us. And I know they are learning,” reports Janus Academy parent Tim Ingram, formerly of London, Ontario. The intensive and wrap-around support, he adds, helps the whole family function, but it takes some extra effort to secure a place in such a school.
School can be tough for autistic children and teens, but many have a worse time once they leave the system. A study by the A.J. Drexel Autism Institute in Philadelphia found that only 19% of American autistic people in their early 20’s lived independently, away from their parents. Wherever they live many are isolated: one in four said that they had not seen friends or received invitations to social events in the past year. Some autistic people prefer their own company, but many are unhappy.
Preparing and training autistic young people for the workforce is emerging as a priority in the new economy. While academic studies on global employment rates for adults with autism are rare, the UN estimates that 80% do not work. A survey by Britain’s National Autistic Society, a charity, suggests that only 12% of higher-functioning autistic adults work full time. For those with more challenging forms of autism, only 2% have jobs.
Job training, life-skills coaching and psychotherapy could really help in tackling the problem. An American study found that 87% of autistic youngsters who were given assistance to find a job, got one. Only 6% who did not receive support were successful. But in most countries, services disappear the moment autistic people finish full-time education.
There is hope that the life prospects for those with autism will improve in the future. More progressive business leaders and enterprises, as reported in The Economist, are stepping-up and providing more flexible employment arrangements to take fuller advantage of the truly unique skills and aptitudes of autistic people. Providing early treatment and effective intensive behavioural intervention is where it has to start.