This is Me: My Life Book

Young Offenders Help Deepen Science’s Understanding of Fetal Alcohol Spectrum Disorder

A pilot project in Winnipeg helps young offenders cope with a medical condition that has a large impact on the justice system: fetal alcohol spectrum disorder (FASD). FASD is an umbrella term covering the range of physical and cognitive disabilities that can occur when a fetus is exposed to alcohol. Although Health Canada estimates that FASD affects approximately nine of every 1,000 babies born in this country, the rates among prison inmates could be much higher, according to studies conducted in Canada and the United States.

The Understanding Youth with FASD and Making Accommodations Project is designed to help young offenders diagnosed with FASD, and the people with whom they come in contact. The Department of Justice Canada’s Youth Justice Fund supported the project for three years beginning in 2009.

Deidre Bissonnette oversees the project and works directly with participants. Since the early 1990s, she has served as both counsellor and programmer at the Manitoba Youth Centre, a youth correctional facility for young offenders.

“This project is unique because it focuses on the particular abilities of each individual,” she says. “It helps them, their families and the people they come in contact with understand how to deal with the effects of FASD.”

Manitoba Ahead of the Curve on FASD

Although FASD was first identified in the 1970s, it remained poorly understood until relatively recently. Diagnosis is a key part of the challenge, because the condition is associated with a broad range of behaviours and physical and mental disabilities. Canada’s first accepted diagnostic standard was published in 2005. The standard involves tests conducted by several specialists, including a physician, speech pathologist, psychologist, occupational therapist and social worker.

“I was in medical school when some of the first research about FASD was published,” says Dr. Sally Longstaffe, a developmental pediatrician based in Winnipeg. “I have devoted much of my career to understanding FASD and I feel most fortunate to have been able to help some of the many individuals and families affected by the condition.”

As medical director of the Manitoba FASD Centre, Dr. Longstaffe is part of the multidisciplinary team that has helped make Manitoba one of the world’s leading jurisdictions for FASD research and treatment. Established in 2009 as part of the Winnipeg Regional Health Authority, the Centre provides diagnostic, education and training services.

“In our work,” says Dr. Longstaffe, “we see many youth with FASD who have struggled all their lives, are often highly vulnerable to negative influences, such as criminal gangs, and are easily preyed upon. So it’s not surprising that many of them end up in trouble with the law.”

FASD and Canada’s Justice System

“There’s no question that FASD has a hugely negative impact on the justice system in Manitoba,” says Justice Mary Kate Harvie. A former defence lawyer who was appointed to the bench in 2000, Judge Harvey believes that new approaches are needed to help young offenders who have FASD. She is one of many in Manitoba’s justice community who are working on effective solutions.

“I’m a big supporter of anything that helps individuals obey court orders,” she says. “And the earlier that intervention begins the better, because many youth with FASD end up as repeat offenders.”

The Making Accommodations Project grew out of the collaboration between Manitoba’s justice, medical and social-service communities. The project is voluntary and is open to young offenders incarcerated at either the Manitoba Youth Centre in Winnipeg or the Agassi Youth Centre in Portage la Prairie. Following a clear diagnosis from the Manitoba FASD Centre, participants work one-on-one with Deidre Bissonnette to identify specific abilities and challenges.

This is Me - My Life Book

One of the activities the youth in the project complete is a work known as This is Me – My Life Book: a written record of personal views, likes and dislikes told in their own words and illustrated with drawings and clip art. Youth are encouraged to describe what makes them angry and what helps to calm them down. Typical chapters titles are: what I want people to know about me; my learning style; my goals and plans; my circle of support; and what helps me have a good sleep.

“Creating the book helps someone living with FASD understand themselves, make sense of the world around them, and communicate effectively with other people,” says Deidre Bissonnette. “These are often major challenges for people with FASD.”

The project builds on the current scientific model for FASD. Given that little is known about how exposure to alcohol impairs brain development, the model focuses on FASD’s impacts on an established series of brain functions, also known as brain domains. These include cognitive abilities, such as memory, adaptive behavior and communication.

“By measuring a person’s ability to complete tasks associated with specific brain domains, we can get a relative assessment of their abilities and disabilities,” says Dr. Longstaffe. “This enables all of us - individuals with FASD and their families, along with doctors, youth and social workers, and justice officials - to speak the same language. It also makes it easier to develop treatment plans.”

While there is no cure for FASD, there is evidence that people with FASD can learn to adapt to the condition - a possibility that inspires Deidre Bissonnette.

“The My Life Book project focuses on their abilities,” she says. “For some of these kids, it’s the first time that anyone has shown an interest in what they’re good at; the focus has always been on their problems, on what they can’t do.”

It takes anywhere from four to 25 hours for a youth to complete their book. More than 40 youth participated during the first three years of the project. Several continue to update their books regularly.

The books have tremendous practical value as communications tools, particularly when youth move to a new school, group home or other setting. Bissonnette says that participants share the books with parents and other family members, along with social workers, teachers, and juvenile correctional counsellors.

Dr. Sally Longstaffe is also optimistic about the future of people with FASD. “The collaborative projects now underway are generating new knowledge about the potential for continuous improvement,” she says. “This is a big change from just a few years ago, when there were no meaningful supports of any kind for youth with FASD.”

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