The families of teenagers with autism are struggling across Ontario as gaps in support leave parents as primary caregivers and limited resources in schools don't meet students' needs.
Windsor experts are highlighting the difficulties in providing consistent care to young people after CBC News shared the story of Adbullah Yar Khan, a 16-year-old whose mother said is no longer allowed to attend Holy Names Catholic High School after hitting an educational assistant.
Now Shabana Shahab is left as her son's primary caregiver, a position that is placing increasing strain on her and the teenager.
"I've talked to other parents like her," said Dr. John Strang, director of the Ozad Institute, which researches neurodevelopment disabilities.
"It's kind of no-man's land between 16 and 19 years of age. You are still a child, but you're still an adult in your body size and in some other ways," he added. "There is a problem with these gap services and what to do."
'Our life is like a living hell'
For Shahab, those gaps mean she showers, feeds and sees to the every need of her son, a task that can sometimes be too much.
"There's no place for our kid. Our life is like a living hell," she said. "We are getting older. My son is getting bigger. He needs two people for personal care. We face all these challenges alone."
Support services are also experiencing increasing pressure, according to Family Respite Services executive director Cathy Shanahan.
The organization provides support for about 1,000 kids dealing with disabilities in Windsor — about half of which are on the autism spectrum.
Limited support a problem in schools
Providing care and support in schools can be complicated, said Shanahan.
"Unfortunately their options are very limited," she said. "We have been told very clearly by our funders that funds can't be used during the school day, the board of education is supposed to cover the school day.
Autistic children need flexible, specialized programs and staff who understand them in order to succeed in the classroom, she added.
"If you can't talk you want a person who really gets what you're all about to support you," Shanahan said. "It takes somebody who is really interested in supporting someone who had those kind of challenges."