Myles Himmelreich does not look like someone living with a disability. He possesses confidence, a wide, easy smile and an ability to connect with people. He speaks at conferences all over the country with audiences of up to 1000 people.
He is a husband and a father with a successful career, and he lives every day with Fetal Alcohol Spectrum Disorder (FASD). Himmelreich was asked to present his story over 10 years ago when a friend asked him to speak at an FASD conference; he’s been doing it ever since.
“We need to normalize the conversation around FASD,” he shared. “There’s so much stigma and shame and blame around FASD. There’s no reason we should be afraid or scared to talk about it.”
Himmelreich has known he was living with FASD his whole life, but he didn’t actually start to understand it until he started going conferences, learning about it and being able to connect it to his own experience.
“I didn’t fully understand the exact differences between myself and the other kids,” Himmelreich said. “But I do remember in elementary school, probably about Grade 5 is where I started thinking that I acted weird and different than the other kids and I didn’t understand why. I didn’t know why I couldn’t control the way I acted. I just did it, and then right after I did it, I would be like, ‘Why did I do that? Why would I act that way?’
“Once I learned, understood, and became accepting of my diagnosis, then I learned, understood, and became accepting of myself,” he said.
Himmelreich explains FASD as a “whole body diagnosis” that can affect the physical body as well as the brain. He was one of 500 people living with FASD that participated in a groundbreaking study on the effects of FASD on the body.
“There has been a lot of research done on FASD’s effects on the brain but little on the body,” Himmelreich explained. “This study found that people living with FASD are more likely to suffer from health ailments much earlier than they should for their age.”
For example, people with FASD are 147 times more likely to suffer from chronic hearing loss, develop early-onset dementia in their 40’s, or live with various forms of arthritis in their teens.
Just diagnosing these conditions can be a challenge, as doctors aren’t often expecting to find these diseases in younger patients and they often go untreated.
“I have hearing loss, hip dysplasia, osteoarthritis and scoliosis,” shared Himmelreich. “And I’ve been living with these since I was a teenager.”
No two people with FASD will have the same challenges due to the wide variation of alcohol effects on brain development. FASD is different in every individual, but there are common traits. Some present the classic facial features associated with the disability (small eye measurements, flat philtrum, and a thin upper lip), some outgrow some of these features, and some never present them at all.
“Science tells us there’s a four day window during pregnancy where the facial features will be affected,” said Himmelreich. “But despite all of the research, scientists still do not know how much alcohol and when will cause the most effects.”
People often think that FASD is associated with social, ethnic, or cultural background. While a common misconception is that this disorder only happens to alcoholics from impoverished communities, two significant risk groups are actually post-secondary students and professional women.
In both cases, women not planning a pregnancy can easily go some time before realizing they are pregnant — during which time they’ve had a few social drinks on weekends or some wine after work. And any amount of alcohol during pregnancy creates a risk for FASD.
Current studies suggest that closer to four per cent of individuals in Canada have FASD, around 1.4 million people. Those born with the disability are at increased risk of being in the justice system, substance abuse, and mental health issues.
Most individuals affected by FASD are not diagnosed until adolescence or adulthood, if at all. Often the diagnosis only comes when a child’s behavior leads to various testing, and FASD is often referred to as an “invisible” disability for this reason. However, Himmelreich doesn’t see it this way.
“Regardless of whether or not a person presents any physical signs of the disability, we can see FASD once we know what we’re actually looking at,” Himmelreich explained. “FASD can incorporate processing issues, sensory issues, cause and effect, struggles with concrete and abstract, and chronological versus developmental age. We can see those things, but unfortunately society will see many of these things as bad behaviour and jump straight to punishment.”
This is where Himmelreichsees the opportunity for real change in how we interact with FASD individuals. His approach involves ensuring the individual is being understood and supported based on where they’re at, not where we’d like them to be.
“If an individual is 19 years old but is developmentally 12, are we supporting them where they’re at?” he said. “It’s about finding that individual’s strength and focusing on that. If a person is really good with horses, lets focus on that. Let’s not get stuck on the fact that they can’t spell their last name.”
For Himmelreich, his individual strength lies in connecting with people, the ability to tell a story, and getting people to understand what it’s like to live with FASD.
Part of his approach involves incorporating the audience into his world. A volunteer is given a bendy pencil and told to complete several tasks while wearing thick gloves, flashing glasses, and listening to two sections of the audience count as fast as they can to 100.
“This is what school was like for me,” he explains. “There was so much sensory overload happening all the time, yet the teachers routinely thought I just wasn’t paying attention, or I just didn’t care.”
Now 41 years old, Himmelreich has learned what works for him and how to incorporate into his life to make it better. His symptoms are all still there, they haven’t lessened, but his ability to deal with what comes into his life has grown by leaps and bounds. And he is focused on helping others by normalizing the conversations around FASD and getting people to better understand that those with FASD face the same challenges that everyone else does, such as problems managing their money or their time.
“Most people face similar challenges those with FASD face every day,” he said. “I’m not ashamed to have FASD. The best thing we can do is to find strategies to help those living with FASD and understand it as best we can.”