CHEO opens clinic to improve FASD assessment, providing answers families need

OTTAWA — Janet Carioni is thrilled to see CHEO’s new assessment clinic for fetal alcohol spectrum disorder (FASD) assessment and diagnosis. The clinic brings together, in one place, all the expertise needed to make the best and quickest possible diagnosis of FASD.

As an occupational therapist with clinical interest in FASD and a mother with lived experience, Janet knows firsthand why this clinic is so vital for the community.

“I have two wonderful kids, each with a diagnosis of FASD. I had to navigate getting their diagnosis myself, including finding and paying for a private psychological assessment,” says Janet. “I’m lucky because I knew where to look and what to do on my own. But not everyone does. Most parents just know their child has difficulties. This clinic will help families get the answers they need.”

FASD is a lifelong disability, estimated to affect 4% of Canada’s population, most of them undiagnosed, according to the Canada FASD Research Network. People with FASD will experience some degree of challenges in their daily living, and need support with motor skills, physical health, learning, memory, attention, communication, emotional regulation and social skills to reach their full potential.

In Ottawa, more than 1,100 elementary students are estimated to be affected by FASD. Prior to CHEO’s new assessment clinic, no multi-disciplinary FASD assessment service existed in the region.

Now, CHEO’s multi-disciplinary FASD Assessment Clinic streamlines the process, using best practice guidelines from the Canada FASD Research Network.  

With one centralized spot for comprehensive FASD assessments in Ottawa, families can more quickly get to a place that allows them to focus on what matters most, their child’s strengths and successes.

“So often, our kids are defined by their struggles, by what they can’t do. It's important to identify strengths. This clinic will give children the opportunity to learn that they have things they are good at too,” says Janet.

“Parents get to see their kids in a whole new context,” says Shai Rowan, CHEO’s social worker for the FASD Assessment Clinic. “They’re often surprised by their children's abilities during the assessment appointments. They get to see their children explore their skills in a safe environment, supported by professionals who understand their needs and challenges. It's a powerful and positive thing to see.”

CHEO’s FASD assessment team consists of a social worker, psychologist, psychometrist, occupational therapist, speech-language pathologist and pediatricians. Each health professional assesses the child based on the child’s strengths, needs, history and symptoms. Youth and adults with suspected FASD are also eligible to access this service. Parents often accompany their children during these visits.

“Families appreciate that we’re able to help them by coordinating all their assessments in a timely manner,” says Shai. “We’re also taking away uncertainty by connecting families with professionals who understand what they’re going through and can give them answers.”

The process begins with a discussion with the clinic’s social worker. During this visit, the social worker reviews relevant background information, such as the behavioural and medical history, previous assessments, and recent report cards. This information allows the team to schedule all the necessary assessments. The social worker also goes over what to expect during the process and will support families deciding whether they’re ready to move forward with an assessment.

After these visits, the team comes together to discuss a diagnosis decision. Patients and families then debrief with the social worker and psychologist to review the decision and consider the next steps. Regardless of the outcome, the clinical team connects families with community partners and resources that can support them.

Looking ahead, Janet is confident that CHEO’s FASD Assessment Clinic will provide the answers parents and their children need.

“Having the correct diagnosis matters with FASD. There are many subtle differences that add to the complexity of FASD, but our kids can achieve outstanding outcomes and live their best lives with accurate diagnoses and connections to the right resources.”

To find out more, visit CHEO’s FASD Assessment Clinic webpage.  

Partner quotation

“We’re delighted that the Ontario government has funded CHEO to establish a multi-disciplinary Fetal Alcohol Spectrum Disorder Assessment Clinic for children and adults in Ottawa. Since creating our Fetal Alcohol Resource Program six years ago, we’ve heard about the challenges and high costs of obtaining a diagnosis for this permanent brain injury. This assessment clinic will be vital in allowing those we support with suspected FASD to receive a timely diagnosis.” – Heather Lacey, Executive Director of Able2.