While FASD is a physical disability with over 420 co-occurring conditions, (see: FASD: A Whole-Body Disorder with over 400 co-occurring conditions) the part of the body that connects this, the brain, is invisible to our eyes. Very few people with FASD have any visible characteristics. When people can’t see a disability, people are quick to judge.
Despite being the leading cause of developmental disabilities, Fetal Alcohol Spectrum Disorder remains largely unknown. It is most often misdiagnosed and almost always misunderstood.
We now know the majority of people with FASD do not have what was previously referred to as “the face of FAS” – in fact previous studies have shown only 10% do. That means the other 90% may have similar struggles and challenges, but because they do not look like they have a disability, they may not be provided with the support or accommodations they need to help them succeed. We shouldn’t have to “look” like anything. We should be provided with what we need. FASD is the pink elephant in the room.
Most people find individuals with FASD friendly, polite, engaging, funny and helpful. When you spend more time with them you may notice certain quirks and challenges they may have in navigating the everyday world. They can be impulsive, a black & white thinker, unorganized, not connect actions with consequences, perseverate, and have trouble transitioning or remembering things, even if it has been done a hundred times. These are symptoms of the disability – but if people are not aware these are beyond their control, they may think they can be controlled and therefore will give consequences instead of accommodations.
In 2017 Holland Bloorview Kids Rehabilitation Hospital (Toronto, Ontario, Canada) launched a national awareness campaign, called Dear Everybody. Although not specific to FASD, (or even Canada), the campaign is dedicated to breaking down disability stereotypes and challenges everybody to reexamine prejudices and assumptions. One statistic revealed in the campaign hauntingly echoes my first wish about friendship: 53% of kids who have disabilities have zero or only one close friend. Although it doesn’t ease the loneliness for individuals without a friend, it shows us they are not alone in their struggle to form friendships.
Individuals with FASD are so often misunderstood. People see the behaviours, not the symptoms of the disability. My 2nd wish remains: recognition that not all disabilities are visible – and expanded to say: so there can be more inclusion, understanding and support.
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