New approach to FASD in N.W.T. focuses on accommodation, not behaviour

A new wave of thinking on how to work with those who live with Fetal Alcohol Spectrum Disorder (FASD) has arrived in the Northwest Territories.

It aims to recognize FASD as a brain-based physical disability, with symptoms or effects expressed through undesired behaviour. But instead of a focus on correcting the behaviour, this "brain-based" approach is focused on accommodating the disability before the bad behaviour happens. 

A three-day workshop in Yellowknife this week presented the approach to more than 150 parents, and front-line social, mental health, and justice workers in the N.W.T.

"Until recently … FASD has been understood as a condition," said Nathalie Brassard, the FASD consultant and facilitator with FASCETS Canada West who led the workshop.

"We knew what caused it, but we didn't really know quite what to do for the individuals…. We focused on … behaviours, not realizing that behaviours are only a sign for the root cause, which is a brain that functions differently."

It's estimated by the Centre for Addiction and Mental Health (CAMH) that one out of every 13 women who consume alcohol during pregnancy will deliver a child with FASD — a disorder with a range of mental, physical and behavioural effects that result from neurochemical and structural brain damage in the mother's womb. It can interfere with a person's ability to successfully function in daily life.

In Canada, the CAMH estimates that eight out of every 1,000 children have FASD, although rates are generally acknowledged to be higher in special populations, such as the child welfare system or the justice system. According to the Northwest Territories Health and Social Services Authority, there are no statistics on the prevalence of FASD in the territory, but between one and four per cent of the Canadian population is affected by the disorder.

A paradigm shift

Brassard described the change in focus — from behaviour correction to disability accommodation — as a paradigm shift.

"The importance is to realize who we have in front of us — to ask ourselves, who is this person? What do they need? How do they function or function differently? What's hard for them?" Brassard said.

"By providing accommodation and support, those behaviours that we've been focusing on reduce on their own, and diminish and disappear."

But accommodation will vary from person to person, said Shawna Pound, the territory's adult FASD program co-ordinator with the Northwest Territories Health and Social Services Authority. The trick is to identify what a person needs in order to overcome undesired behaviour, and then to put mechanisms in place to account for those needs.

As an example, she describes a person with FASD who is chronically late for work. That person may, through disability, lack the capacity to understand what is going wrong every day. For the rest of us, it might be obvious that the person needs to set alarms as reminders to get to work on time. What may be unique about the person with FASD is the inability to make that judgment call, to recognize there is a problem, and to set an alarm.

"They need someone to set the reminders up in their phone, or maybe they need a phone call," Pound said. "It'll look different for everybody."

Pound said that the three-day workshop this week qualified participants for formal facilitator training in the method. She said a few people have shown interest in the year-long training process, and her department would like to see the approach expand in the North.