A diagnosis with Fetal Alcohol Spectrum Disorder does not need to limit a person’s potential, says a specialist living with the condition.
Myles Himmelreich travels across Canada speaking about his life with FASD, and how others can better understand the disorder’s challenges. He brings his experience to the Port Alberni Friendship Center this Friday, Nov. 16, bringing a message that might surprise some in attendance.
“There’s so much stigma, shame and blame that’s connected to FASD,” said Himmelreich. “A lot of that is because of the lack of information, plus misinformation that people have.”
Fetal Alcohol Spectrum Disorder is defined by Health Canada as a range of disabilities caused by the mother’s consumption of alcohol during pregnancy. This can cause developmental delays, intellectual problems and difficulty in social settings. People with FASD often have difficulty learning in school, understanding the consequences of their actions, handling money and telling the time. The condition can bring lifelong challenges with alcohol, drugs, holding down a job, paying rent or getting along with others in a socially appropriate manner.
FASD is difficult to diagnose, as each individual’s version of the condition is unique. When Himmelreich was adopted at the age of three, his new parents were aware of fetal alcohol exposure, but he didn’t receive a formal diagnosis until he was in his mid-30s. Research suggests that although FASD often entails learning difficulties in school, those diagnosed do not necessarily have a lower IQ than the general population.
“There was a lot of struggles in school because of what looked like not doing my work or not paying attention, was actually things like sensory issues, or struggling with the lights, noise or smells,” recalled Himmelreich. “I would learn something, but then I couldn’t retain the information and be able to do the homework.”
From an early age this was perceived as a refusal to properly apply himself to his studies.
“People think it’s bad behaviour and [they] jump straight to punishment, which was my experience in school,” said Himmelreich. “I got up every day feeling, ‘Okay, great, I’ve got to back to this place where I fail every day and I’m told I’m not good enough or I’m not trying hard enough’.”
Although he was developmentally behind his peers, Himmelreich was able to find some acceptance during his teenage years by supplying alcohol.
“To be accepted and have friends all I had to do was show up with a bag of weed or a case of beer,” he said, noting that this company intensified the degree that he was misunderstood by other kids. “All I knew was, I’m weird, I’m different and nobody likes me.”
Across Canada an estimated 3,000 babies are born with FASD each year, and approximately 300,000 live with the condition across the country, with a higher representation in Aboriginal, rural and remote communities, according to Health Canada.
To be given a fair chance in life, those with the condition need others to see their abilities, said Himmelreich.
“It’s a matter of finding what the individual’s strengths are, and focussing on those. I think we much too often focus on what people can’t do, rather than what they can do,” he said. “It’s finding what your success is.”
Age the age of 40, Himmelreich has progressed beyond the frustrations of his youth. Recently married, his busy schedule is taken with caring for his eight-month-old daughter, travelling as a motivational speaker and serving as a consultant for the Assante Centre, which performs diagnoses for people with FASD and autism.
In 2017 Himmelreich led a study with two other researchers who are also diagnosed with FASD, collecting data from over 500 people living with the condition across Canada and the United States. With an average age among the study’s subjects of 27, the research team found a surprising prevalence of physical ailments that normally afflict older people, including osteoarthritis and early onset dementia.
“What we found through the survey is that the bones, the muscles, the organs, all of those things are being affected by the intake of alcohol during pregnancy,” said Himmelreich. “Individuals with FASD are being affected with health issues at a younger age.”
Despite the many challenges that condition brings, Himmelreich continually sees opportunity for personal growth.
“It can be a struggle at times, but I always try to take whatever experiences I have and try and understand where it’s coming from,” he said. “I don’t ever want to be seen as a victim who suffers and I don’t ever want to use FASD as an excuse. So it’s understanding that I’m going to struggle with sensory issues and stuff, it’s also understanding that I can learn what I can do about it.”
Myles Himmelreich is being brought to the Port Alberni Friendship Center by Circles of Cedar, the friendship centre and the Foster Parent Support Society. He will be speaking 9:30 a.m. to 2:30 p.m. on Friday, Nov. 16. The event is free with lunch provided, but preregistration is required. Seating is limited, so if interested, provide your name to Circles of Cedar at penn.circlesofcedar@shawbiz.ca as soon as possible.
