Seeing Beyond the Behaviour: One Family’s Journey with FASD
SEPTEMBER 17, 2026
For FASD Awareness Month, Jason shares his family's experience raising his adopted son, Jack, and why understanding FASD starts with looking beyond behaviour.
When you meet Jack, one of the first things you notice is how much he loves people. At 14, Jack is passionate about music, basketball, and his PlayStation 5. He enjoys meeting new people and has an impressive ability to remember the people he meets around his Toronto neighbourhood. His father, Jason, describes him as having a “huge personality” and being exceptionally social.
What you may not immediately see is that Jack lives with Fetal Alcohol Spectrum Disorder (FASD) and an intellectual disability. For Jason, understanding the difference between what people see on the outside and what Jack is experiencing underneath has been an important part of their family's journey.
You always have to remember that the behaviours that we have are the symptom of the disability.
September is FASD Awareness Month, and September 9 is International FASD Awareness Day. While awareness includes understanding the importance of alcohol-free pregnancies, it also means creating greater understanding and compassion for people living with FASD and the families and caregivers who support them.
For Jason, awareness means going beyond knowing what FASD stands for; it means understanding how the disability can affect a person's everyday life and recognizing the person behind the diagnosis.
A Diagnosis That Helped Make Sense of the Journey
Jason and his wife didn't set out to become caregivers to a child with FASD. When they adopted Jack, they didn't know that prenatal alcohol exposure would ultimately be part of his story.
As Jack grew older, teachers began noticing that he was missing developmental milestones. Initially, he was diagnosed with global developmental delay. Eventually, Jack received a diagnosis through the FASD clinic at St. Michael's Hospital. The diagnosis gave Jason and his family a framework for better understanding Jack's strengths, needs, and experiences.
FASD is a lifelong disability associated with prenatal alcohol exposure. It can affect brain development, and influence areas such as learning, memory, attention, communication and emotional regulation. Every person's experience of FASD is different.
For Jack, some of the challenges associated with his disability include processing information, remembering tasks, managing time and money, and understanding the connection between an action and its consequences.
But those challenges are only one part of who he is.
“He's off the charts when it comes to connecting with people,” Jason says.
Jack has been given opportunities to develop independence in his neighbourhood, and he rarely misses a chance to say hello to someone he knows. Jason can be out shopping with Jack when someone unexpectedly greets him by name. Jack may struggle with remembering a task or direction, but he remembers people.
It's a reminder that a diagnosis doesn't tell the whole story of a person.
Looking Beyond the Behaviour
One of the biggest lessons Jason has learned is that a person’s behaviour can be a symptom of FASD, not simply a choice. For someone living with FASD, situations that may seem straightforward to others can be much more difficult to process. Fatigue, sensory stimulation, changes in routine, emotions or other triggers can contribute to dysregulation. When that happens, the behaviour people see may be the result of challenges that aren't immediately visible. And that can be difficult for others to understand.
Jason says there are often expectations that a consequence will automatically teach someone not to repeat a behaviour. But for Jack, the connection between an action and its consequence isn't always there. That means responding to behaviour after it happens isn't always enough.
Caregivers and professionals also need to understand what happened before the behaviour and what supports might help prevent situations from escalating. “If you just see the behaviours and you chalk it up to behaviours, you're going to have no empathy for it,” said Jason.
Understanding the disability doesn't mean that challenging situations don't have an impact. It means recognizing that the person experiencing them may not have the same ability to process, regulate or understand what is happening as someone without the disability.
For Jason, that shift in perspective has been essential.
When Systems Don't Understand
Understanding isn't always easy to find. Jason says his family has encountered people who meet Jack and see his outgoing personality first. Because he is friendly and engaging, they may initially assume that supporting him will be straightforward. Over time, however, the complexity of his needs becomes clearer.
Navigating school and community services has been one of the more difficult parts of the family's journey. Jason believes greater awareness and education about FASD among educators, service providers, and the broader community could help to ensure people receive support that reflects how the disability affects them.
In Ontario, FASD is not listed as its own category of exceptionality within the province's special education framework. Students may instead receive support through categories such as behavioural, communicational, intellectual, physical or multiple exceptionalities.
For Jason, improving understanding is an important first step. He believes that when people don't understand FASD, they can focus on what happened rather than why it happened and that can lead to frustration, blame, and missed opportunities to provide the right support.
The Emotional Side of Caregiving
Caregiving can bring emotions that aren't always easy to talk about. For Jason, one of those emotions has been grief. A therapist helped him understand the concept of “ambiguous loss,” which is the experience of grieving something that doesn't have a clear ending. For Jason, that meant recognizing that it was okay to grieve the future he may have imagined for his family while still deeply loving and celebrating the son he has.
“It's okay to grieve,” he says.
Self-care has also become important. For Jason, that means running, biking, and going to the gym. It means finding respite and making time for himself. It also means protecting his relationship with his wife and continuing to communicate about what they're experiencing. And it means resisting the temptation to let caregiving become isolated. Jason and his family continue to travel, spend time with friends and family, go out for dinner and find ways to include Jack in the life they've built together.
This can be a very isolating disability. The last thing you want to do is isolate yourself because it's hard.
Planning for an Uncertain Future
As Jack gets older, Jason is increasingly thinking about what his future will look like.
Some parts of that future can be planned. Jason and his wife have worked with professionals to put financial plans in place to help provide for Jack when they are no longer able to do so themselves.
But financial security is only one piece of the puzzle. The bigger question is what independent living will look like for Jack as he becomes an adult. That's much harder to predict.
Jason has begun conversations about what adulthood and community living could look like for Jack, but there are still many unanswered questions. “It's the part in the middle that is very uncertain at this point,” he says. For Jason, planning is a way of taking action where he can, while accepting that not everything can be predicted.
Finding Community and Giving Back
Through his experience as a caregiver, Jason has also become an advocate. He's involved with Surrey Place's Family Advisory Council, where families and caregivers share their experiences and perspectives to help inform the organization's work.
For Jason, being involved has provided something that can be difficult to find when living with FASD which is community. “This disability is lonely,” he says. Being part of the Family Advisory Council has helped Jason connect with others, share what his family has learned and give back to an organization that has supported them. For him, advocacy is also about helping other caregivers feel less alone.
Awareness starts with Understanding
Jason doesn't have all the answers about what Jack's future will look like. But he knows what he hopes people will understand about his son today. Jack is more than his disability. He's a teenager who loves music, basketball, and video games. He's someone who loves meeting people and remembers the people he meets. He's a son, a brother and a member of his community. And when challenging behaviour occurs, there is more happening beneath the surface than people may realize. For Jason, that's where FASD awareness needs to begin.
Awareness means understanding that FASD is a lifelong disability that can affect people in many different ways. It means challenging stigma and assumptions. It means recognizing the strengths and individuality of people living with FASD. And it means recognizing that caregivers need understanding and support, too.
It also means approaching conversations about prenatal alcohol exposure with care. FASD awareness should never be about assigning blame or shame. Families and individuals deserve compassion, accurate information and access to meaningful supports.
This FASD Awareness Month, Jason's story offers a reminder to look beyond what we see on the surface and to see the person behind the behaviour.
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