A Thornhill couple is advised by provincial officials to leave their 19-year-old autistic son, who wears diapers, at a homeless shelter if they can’t look after him.
A family in Haliburton says they “hope and pray” their two daughters won’t have to care for their 21-year-old autistic brother, who functions at a Grade 2 level, once the parents can no longer do it themselves.
And a distraught Whitby father, whose 21-year-old autistic son smashes dishes and damages parked cars in fits of anger, says he can’t find a program that can handle him.
These are among thousands of stories across the country of autistic children who have grown up and are now young adults — a group long forgotten by existing services and whose families are overtaxed with their care. Nowhere else on the autism spectrum is Canada less prepared than with this growing cohort of wasted young lives.
The writing was on the wall a decade ago when a rising number of young children were being diagnosed.
Even as members of that first autistic boom in the 1990s reach adulthood, the numbers of newly diagnosed children show no sign of abating.
Today, one in 88 children in North America is diagnosed with an autism spectrum disorder (ASD), according to the U.S.-based Centers for Disease Control and Prevention.
By that measure, at least 100,000 adults have ASD in Ontario, including up to 20,000 in their twenties.
It begs the question: What level of care and support are we willing to give these young adults whose abilities and needs are wide-ranging. And what will we do for the newly diagnosed a decade from now?
For Dr. Wendy Roberts, the absence of any plan to address this growing cohort is yet another symptom of the country’s fractured approach to children and adults with autism.
“Children with autism grow up to be adults with autism,” says Roberts, co-director of autism research at Toronto’s Hospital for Sick Children. A recently retired pediatrician, she has been working with autistic children and their families for 20 years.
“The tragedy is that for most of these kids, there is no transition planning in Ontario. It’s absolutely crisis-based care.”
If someone is diagnosed with cancer, a broad system of emotional, social and medical support kicks in, quarterbacked by the provincial health ministry. There is no such coordination for autism, even though, like cancer, the condition has a wide range of social, psychological and medical implications, and affects the entire family.
Roberts believes Ontario needs an interdisciplinary team of professionals — doctors, nurses, teachers, psychologists, psychiatrists, social workers, therapists and job coaches — in every region, and that the Ministry of Health needs to take charge of autism throughout the life cycle.
In his annual report last June, Ontario’s ombudsman flagged the gap in services when teens with autism and other developmental disabilities become adults. Since April 1, the office has investigated 26 complaints from families with nowhere else to turn.
One couple from Sarnia contacted the ombudsman’s office when the government refused to provide residential care for their 21-year-old autistic daughter. The husband was diagnosed with terminal colon cancer and the couple could no longer care for her themselves. In desperation, they abandoned her to a respite home.
A Thornhill mother also complained to the ombudsman after emergency funding for her 19-year-old autistic son’s care in a group home was about to run out. The woman’s marriage had collapsed under the weight of caring for him and she had previously been assured the group home could keep him.
“Public policy says you need to create a transition plan for these teenagers, but to what?” asks Marg Spoelstra, executive director of Autism Ontario, the province’s largest autism advocacy group. The organization, which first sounded the alarm in a 2008 report, is still waiting for a province-wide strategy for autism.
“We have made some gains in services for children. But children with autism will spend most of their lives as adults and we haven’t even scratched the surface when it comes to meeting their needs.”
No Canadian research can tell us what happens to teenagers with autism once they reach adulthood. So what we know is mostly anecdotal — and the picture is not pretty.
After age 18, they lose their pediatricians, publicly funded speech and language services, and behaviour therapy. By age 21, they are no longer entitled to attend public school.
More often than not, young adults with autism continue to live with their parents, without jobs or friends, or much of anything to do. Many are depressed. Some end up on the street or in jail, with little to no chance of exploring their learning potential or career capabilities.
Yet up to 70 per cent, though lacking social skills, have normal to high intellect and can benefit greatly from further education and employment. Those who are lower-functioning need day programs, vocational training or residential care.
Housing is particularly problematic.
“It is every parent’s dream to have an independent, happy, adult child living on their own. My dreams are no different for a child with autism,” says Andrea Stafford, a single mother whose son Chris wound up in a homeless shelter when he was 17.
“The attitude in Ontario is that these young adults will just live with their parents until the parents die,” she says. “Then they will move to long-term care.”
Stafford, who lives in Georgetown, says she watched helplessly as her hormone-charged autistic son was barred from high school for fighting, then bounced through Hamilton’s shelter system because there was no room in group or respite homes.
For almost three months, Chris lived in a Hamilton youth shelter. Every day, Stafford pleaded with her MPP, the school board and community service agencies for a safe place for him.
While on the street, Chris fended off a knife-wielding drifter and called 911 for help when a drug-addled friend passed out and cracked her head.
It wasn’t until Chris went missing for 24 hours and police were called that community agencies finally found the teen a respite-care bed.
Diagnosed with Asperger syndrome, Chris, now 20, has a relatively high-functioning form of autism. Chatty and engaging, he now lives in a group home with four young adults with other developmental disabilities who are largely non-verbal.
But he longs to live with people “more like me.”
“If I look at other people with autism, I often ask myself: Where do I fit in? Do I fit in with the smart people? Or with the retarded people? I don’t like using that term, but that’s what some people call us these days.”
He has volunteered at the local library, but lately spends most of his days sleeping. Stafford worries her son is becoming depressed and might one day choose life on the streets.
“The people I met on the street were better than school. They were like my family,” Chris says. “They treated me like an equal.”
The Ministry of Community and Social Services spends $1.7 billion annually to assist about 60,000 developmentally disabled adults, including those with autism. It provides direct funding, day programs, respite and residential care.
But wait lists are long. About 3,700 families are waiting for direct funding to hire their own support workers. Another 6,000 are waiting for residential care.
The ministry has no idea how many of those getting services or waiting for help have autism. It doesn’t collect data based on disability.
In April 2011, funding and support for these adults was consolidated under Developmental Service Ontario, to ensure equitable access across the province.
However, services tend to be geared to adults with intellectual disabilities. That leaves people with high-functioning autism or Asperger’s ineligible for help.
They also have trouble qualifying for the federal Disability Tax Credit or the Registered Disability Savings Plan, even though they often have trouble getting jobs and living independently.
With so little research on how best to serve adults with autism and so few social service agencies trained to work with them, growing numbers of autistic teens reaching adulthood face an uncertain future.
David and Michele Shapiera, who live in Haliburton, are paying someone to help their 21-year-old autistic son fill his days, now that he is no longer eligible to attend public school.
“Basically, my wife works to fund that companion,” says David Shapiera, whose son Luke functions at a Grade 1 or 2 level.
“We have survived the early screaming sessions that followed us in public settings during his first five to seven years of life; the onset of aggressive hormones in the teen years which would leave my wife bruised if the aggression was vented her way; the constant and continuing struggle with the school system to have a program for Luke that was more than babysitting; and now face the unknown as he no longer can go to school,” says Shapiera, a 51-year-old lawyer in Minden.
“We struggle to find a way that he can exist day-to-day with a purpose — and a way we can exist where our sole purpose is not to find Luke’s sole purpose.”
He adds: “We hope and pray that we are not leaving a legacy to our older daughter, who is finishing a master’s program, or our younger daughter, who is finishing high school, of having to assume care for their brother.”
Even in cities where day programs are offered, waiting lists are long and parents often have to pay up to $100 a day. Many programs aren’t equipped to accept those with severe behaviour problems.
Mastan Dhaliwal, who lives in Whitby, says his 21-year-old non-verbal son smashes household items when he is agitated. He runs into the street, damages parked cars and even attacks passersby. No local programs will accept him.
“I am happy to pay someone to look after him, but no one will do it,” Dhaliwal, 59, says of his son Pawandeep.
Dhaliwal’s wife had to quit work 13 years ago because the school called her so often to come and pick him up. Now, Dhaliwal often has to leave work to protect his wife from their adult son’s aggressive outbursts.
“We have never been able to go out to a movie or a meal because of him,” Dhaliwal says. “It is no life.”
North of Barrie, a group of parents of young adults with a range of developmental disabilities, including autism, has launched a petition for more provincial funding.
“I’m a single parent and I earn $12.22 an hour. But it costs $15 an hour to pay a support worker to take my son to programs,” says Gloria Noseworthy, 52, of her struggles to keep 21-year-old Zach busy during the day, now that he can no longer attend public school.
In June, an American study of almost 1,000 young adults with autism, published in the medical journal Pediatrics, found 35 per cent had no connection with work or school two years after graduating high school.
That was significantly higher than youth with other learning and developmental disabilities.
Most research on autism is focused on youngsters, says Paul Shattuck, the study’s lead author and an assistant professor at the Brown School of Social Work at Washington University in St. Louis, Mo.
Young adulthood and the first few years after high school set the stage for adulthood, he says.
“What we found isn’t very promising.”
Shattuck says he hopes his groundbreaking research will lead to new studies to show why young adults with autism fare so poorly after high school, and what changes are needed to increase their participation in education, employment and other meaningful activities.
Autism Ontario’s 2008 report, entitled Forgotten, warned a single generation of adults with autism in Canada could cost $1.4 billion to $8.4 billion if the proper supports are not in place. It called for a range of services, everything from job coaches and better housing options to crisis support.
Four years later, there is still no strategy.
Andrea Stafford worries that, even though her son Chris is off the street, his future remains bleak.
“Where are the programs and opportunities for him to discover his unique talents and live up to his potential?” she asks.
“There is no system. There is no plan. There is no policy or thought about their future.”