White Coat, Black Art

'You're weird, you're different and nobody wants to be your friend': the loneliness of FASD

White Coat, Black Art speaks with parents, educators and advocates who say fetal alcohol spectrum disorder, or FASD, gets less respect and fewer resources than almost any other developmental disability.

About 4 per cent of Canadian population lives with FASD, says the Canada FASD Research Network

Myles Himmelreich, left, with his wife Amy and daughter Alyxandra. (Submitted by Myles Himmelreich)

Myles Himmelreich says many people don't understand the daily struggles for people living with fetal alcohol spectrum disorder or FASD.

"In school, it was: I was lazy. I wasn't trying. I didn't care. And then I would get detention — when in actuality what was happening was, I maybe was struggling with the sensory issues: it was too bright. It was too loud. There was too much going on," he told White Coat, Black Art host Dr. Brian Goldman.

Himmelreich was born with FASD. It's a devastating diagnosis caused by the brain damage that occurs with prenatal exposure to alcohol.

Symptoms can include learning disabilities, speech delays and trouble regulating emotions. It can be difficult to diagnose, as the symptoms are similar to other developmental disabilities.

As a teenager, Himmelreich says he had the developmental capacity closer to that of a seven-year-old. But the school system and social structures around him, he says, expected him to behave the same as his peers without FASD.

"It would be like getting upset at a baby that isn't walking and talking when they're three months old because you're looking at these kids that are four," he said.

Himmelreich describes what it's like to live with FASD in this animation:

FASD widely misunderstood, says Myles Himmelreich

4 years ago
Duration 1:22
In this animation, Himmelreich talks about his own struggle with fetal alcohol spectrum disorder.

According to a 2018 report by the Canada FASD Research Network, an estimated 1.5 million Canadians have FASD. That's about four per cent of the country's population. For children in welfare or foster care, the prevalence could be as high as 11 per cent.

Conclusive data is hard to come by due to what the report characterizes as "methodological challenges and varied results" in the FASD studies that exist.

The report also said that despite a "common myth" that Indigenous populations experience a higher rate of FASD, there is no conclusive data to support the claim.

Dr. Ana Hanlon-Dearman, medical director at the Manitoba FASD centre and network in Winnipeg, says teachers are often the first to notice possible signs of FASD. But she told Dr. Goldman that it's best to look for signs of FASD before school age, to better prepare parents as well as educators.

Dr. Ana Hanlon-Dearman is a medical director at the Manitoba FASD centre and network in Winnipeg. (Ingrid Misner/Submitted by Ana Hanlon-Dearman)

Without that diagnosis, many symptoms could be chalked up as "intentional behaviours" or a lack of discipline.

"We may see people apply terms like, you know, a person is struggling, and it seems intentional. But it really isn't intentional. They really are just struggling to kind of make sense of what the environment is demanding of them," she said.

Miles Himmelreich says that struggles in school are often made worse by the social challenges of children with FASD.

"The only thing you've been told is, you're weird, you're different and nobody wants to be your friend."

Laurie Whyte's adopted children, Richie and Carly, both have FASD. Carly was diagnosed quite early, but Richie wasn't diagnosed until symptoms appeared when he was in the first grade.

"He would sit in the middle of the carpet and scream" at his school in Guelph, Ont., when there was a transition in activities, she told White Coat, Black Art's Jeff Goodes.

"He wasn't able to dress himself to get outside, so every recess was a struggle. And the school really pushed that he needed to do those things by himself, so he would have full meltdowns on a regular basis."

Laurie Whyte, right, and her son Richie at a Pregnant Pause Baby Bump Gathering, an FASD awareness event in Guelph in 2017. Richie was diagnosed with fetal alcohol spectrum disorder (FASD) when he was in the first grade. (Submitted by Laurie Whyte)

Whyte searched for support and understanding from health care, education and social services, but continually ran into dead ends.

"There were no programs for him to go to with other kids with fetal alcohol. He was not allowed into programs that were for other kids with developmental disabilities because fetal alcohol wasn't considered a developmental disability and it often still isn't at this point," she said.

He also had difficulty reading signals from classmates, which meant he was often lonely. Desperate for friends and approval, Richie was often teased or strung along by bullies who pretended to be his friend.

"He was told to do things that were completely inappropriate but because he wanted friends he would do it," Whyte remembered.

She would keep him home, to protect him but Richie would get frustrated and run away. That led to encounters with the police.

"More often than not, the police weren't all that helpful," said Whyte.

During those encounters, Richie would often have trouble following officers' line of questioning and instructions.

"They would perceive that as being defiant and uncooperative. They would become more threatening. He would become more threatening, because he was scared. And that never went well."

The Canada FASD Research Network estimates that up to 23 per cent of Canadian offenders have FASD.

Richie, now 17, was recently placed in a home that provides intense one-on-one treatment for teens with behavioural issues. His mother says he's had a rough few months, and sometimes spends nights on the streets. Whyte says what he needs most at this point is "support from people who understand."

'Everybody has a purpose'

Dr. Hanlon-Dearman says she sees lots of patients with FASD who do well as adults — if they get the kind of "multidisciplinary" and long-term support they need.

That could include speech and language therapists, occupational therapists or educational supports. In adulthood, their needs could include housing and daily living skills assistance.

She says she's seen an increase and improvement in the "diagnostic capacity" for FASD, either at the Manitoba FASD centre and network where she works or similar centres across the country.

"We know more, and we're doing better. So I do feel hopeful," she said.

Myles Himmelreich consults on FASD, and gives motivational speeches — working to be an advocate for people living with the condition, and their family and friends. (Submitted by Myles Himmelreich)

Today, Himmelreich is in his 30s, and has learned to cope successfully with FASD. He currently lives in Surrey, B.C., happily married and a father to daughter, Alyxandra.

He now consults on FASD, and gives motivational speeches — working to be an advocate for people living with the condition, and their family and friends. He hopes to be a pillar of support to those who, like him, feel they were forced to cope by themselves without guidance.

"I use the acronym FASD not just as fetal alcohol spectrum disorder, but as a way that I choose to live my life. And that is: F is for Faith; A is for ability; S is for strength; and D is for determination," he said.

"And I feel if you can live your life through that, you'll find where you fit in this world. You'll find your purpose, because everybody has a purpose."

Written by Jonathan Ore. Produced by Jeff Goodes.