When Myles Himmelreich was a child and diagnosed with Fetal Alcohol Spectrum Disorder (FASD), the doctor only told his parents that he would have trouble learning and reading. But a lot more was going on mentally and physically.
Sitting in class at school, he couldn’t focus on what the teacher was saying because of his heightened senses: flickering lights, loud sounds, and the feel of clothing against his skin were continuous distractions.
So when the teacher would ask him for an answer, he wouldn’t know because he couldn’t focus on what was being said.
However, he was seen as not caring about learning and being lazy.
And what Himmelreich calls “bubble trouble” makes it difficult for him to sit still because he is constantly moving.
It was the same way when he got out of school and started working.
But he doesn’t spend time focusing on the negatives, he focuses on his strengths and says society needs to think this way too. What he wants people to know is what they can do to understand a person with FASD: instead of seeing their behaviours as bad, instead ask ‘where does this behaviour come from?’
FASD is a brain injury, similar to what people sometimes get in a car accident and the problem is it’s an invisible disability.
If someone is in a wheelchair, people would likely hold the door open for them; if you see someone wearing a hearing aid, you will speak louder.
In other words, when people see someone with a disability, they will accommodate that person but when they don’t see a disability, they think it’s the person’s behaviour that’s at fault.
It’s best to ask yourself how you can have more patience or understanding with the person or ask that person what works for him or her; how can we change to support the individual.
When FASD is discussed, it needs to be an informative conversation and not a judgmental one, said Himmelreich.
That includes greater understanding for mothers whose children have FASD because often, it’s not that they don’t care about their child and most children born with FASD don’t have mothers who are drunks, he said. It can be a woman who’s a casual drinker and when she finds out she’s pregnant, the baby could already have FASD, he said.
Himmelreich is part of a health survey looking at the physical characteristics of people with FASD.
People know the brain is affected by FASD but it affects the entire body and can cause higher rates of diseases and at earlier ages than the average population.
For example, there are people in their 20s with early onset dementia and 14-year-olds going through early menopause.
Himmelreich had arthritis in his knees and hips when he was 12 and he couldn’t ride a bike because it hurt too much.
The problem is doctors don’t think to diagnose these diseases in young people, he said.
He has his own meaning for FASD: F is for Faith that he has a purpose for being here; A is for Ability to focus on things and do them; S is for Strength to find what he’s good at doing; and D is for Determination to face struggles and if he gets knocked down to get up again.
Himmelreich was here last week to talk at the Kermode Friendship Society and REM Lee Theatre about his life because as he says, the best way to understand what it’s like to have FASD is to ask a person with it.