Kyle Echakowitz says his transition from high school to college was not just stressful, it was downright "scary."
Becoming a postsecondary student meant having to learn how to manage his time, figure out a course load he could handle and advocate for himself. The switch was particularly daunting for Echakowitz, who has Asperger syndrome (now included in the diagnosis for autism spectrum disorder, or ASD), as well as attention deficit hyperactivity disorder, anxiety and depression.
"It was a very, very big change," says Echakowitz, 20, who is now in the second year of a social-service worker program at Toronto's Seneca College. "This is … a lot of pressure and responsibility, and it makes you just feel very frustrated with yourself and your own abilities – or lack thereof."
Becoming an adult at 18 also meant leaving the care of his long-time pediatrician to start seeing a family doctor. "That was a really difficult transition," he says. "My old doctor, he understood me, he was very involved and he was very understanding, whereas now it's kind of like, now I'm on my own."
A new study suggests Echakowitz is not alone. Young adults with ASD are much more likely to have psychiatric problems than their peers, according to researchers from the Institute for Clinical Evaluative Sciences and York University. More than 51 per cent of young adults – between the ages of 18 and 24 – with ASD in Ontario also have at least one psychiatric diagnosis, the study found. That compares with almost 39 per cent of young adults with other developmental disabilities, such as Down syndrome, and almost 20 per cent of the general population.
And yet it is during this transitional period that they will age out of the system that has provided services throughout their childhood. In Ontario, individuals make the leap from child to adult social services at 18, and those with developmental disabilities typically leave the public-school system by 21, which means a disruption of their daily routines and separation from familiar health professionals and service providers. In Alberta, the switch to adult services also occurs at 18, with transition planning usually starting at 16. Alberta students are eligible to attend public school until the age of 19, though those with disabilities may be allowed an additional year.
In British Columbia, eligibility for autism funding and most other programs for children and youth with special needs ends at the age of 19, although there is no maximum age for children with disabilities to attend public school.When this transition period occurs, parents and caregivers say they are often left to find and pay for services themselves.
"There is very little funding for these kids after they turn 18," says Echakowitz's mother, Jodi Echakowitz, who is a board member of the Asperger's Society of Ontario. For instance, she says, while her son was able to take advantage of the Ontario Ministry of Children and Youth Services' Special Services at Home program as a child, which helped pay for things such as respite care and one-on-one support when he went to camp, he could no longer access those funds as an adult. His psycho-educational assessments, which were used to determine the supports he needed, were previously covered by his local school board but are no longer covered.
The study, published on Wednesday in the Journal of Autism and Developmental Disorders , also found that young adults with ASD were more likely to visit a psychiatrist or a hospital emergency department for psychiatric reasons.
In Canada, it's estimated that at least one in 94 children has been diagnosed with ASD. To plan for their health care, it's necessary to better understand their particular needs, says Dr. Yona Lunsky, an author of the study and director of the Health Care Access Research and Developmental Disabilities program at Toronto's Centre for Addiction and Mental Health (CAMH).
While other research tends to focus on children with ASD, this study looked at young adults, says Lunsky, who is also an adjunct scientist at the Institute for Clinical Evaluative Sciences. "It's specific to this very vulnerable time period when people are transitioning from school to whatever happens after and from being children to being adults."
The researchers analyzed the health characteristics and use of health-care services of 5,095 young adults with ASD, 10,487 young adults with other developmental disabilities and 393,263 young adults with no developmental disabilities, using data held at ICES (Institute for Clinical Evaluative Sciences).
Young adults with ASD had similar or slightly lower rates of diabetes, hypertension and asthma than those with other developmental disorders. But their rates of psychiatric diagnoses and use of psychiatric care stood out.
The findings suggest a need to examine how health services can better address mental illnesses such as depression and anxiety in young adults with ASD, Lunsky says. For instance, she says, psychiatrists and psychologists who work with adults are often not trained to work with people with ASD and other developmental disabilities.
"If we know that [mental illness] is something that they're likely to develop, can this give us ideas around … mental-health promotion, prevention of mental illness and early screening and making sure that we give people the supports they need early in their trajectory?"