Carol Gauthier’s youngest son will turn 18 in April, an age typically celebrated as an important milestone, the point at which a child starts their adult life. But for Carol and her husband, this birthday brings a lot of uncertainty.
The Gauthiers adopted their son when he was one, and he was diagnosed with Fetal Alcohol Spectrum Disorder (FASD) at the age of five. Over the next several years more diagnoses followed including attention deficit hyperactivity disorder, oppositional defiant disorder and sensory processing disorder. Despite the challenges, Carol and her husband always managed to find their son supports—family therapy, occupational therapy and costly assessments which qualified him for special school programs.
With his eighteenth birthday looming, the Gauthiers—like many other families across the country—are struggling to figure out what comes next for their adult child living with a developmental disability. Carol’s preference is for her son to stay in school which he can technically do until he’s 21. However, he’s made it clear he won’t and as an adult she can’t force him. The Gauthiers have started the process of applying to Disability Services Ontario (DSO), the gatekeeper for adult developmental services across the province. But even if their son is approved, it’s unclear what kind of support he’ll receive and whether or not it will be delivered in a way that meets his needs. On a good day, he can make scrambled eggs with supervision.
FASD is a brain-based disability that results in a wide spectrum of impairments. The most recent estimates suggest up to three per cent of the general population could have the disorder, which equates to more than one million Canadians possibly living with FASD.
This means at any given time there are thousands of children living with FASD who—by legal standards—suddenly become adults on their eighteenth birthday. The societal expectation is for these young adults to move out of their parent’s house, go to school and get a job. The reality tends to be a cohort of young people who have lost access to their pediatricians and publicly funded supports that come with school, not to mention burnt out caregivers trying to navigate the murky waters of limited adult supports. For those without a caregiver, the picture is often bleaker: homelessness, addiction and incarceration are not uncommon.
Dr. Gail Andrew is a developmental pediatrician at the Glenrose Rehabilitation Hospital in Edmonton and has spent the better part of 30 years working with families living with FASD. Over this span of time, Andrew says very little research has been done and barely any progress has been made in improving the transition process for youth living with FASD entering adulthood.
“All this research and work in transition started with medical conditions that were very black and white, like transitioning someone into an adult diabetes clinic,” says Andrew. “FASD is a medical diagnosis but it doesn’t fit into a nice measurable medical model.”
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Disclaimer: The views and opinions expressed in this article are those of the authors and do not
necessarily reflect the official policy or position of the Edmonton and area Fetal Alcohol Network Society, its stakeholders, and/or funders.
I’ve seen this article shared by several people online. It’s a fantastic and also sobering article. Thank you for sharing it!