#064 Reinier deSmit: My FASD Engine

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Imagine living five decades thinking you didn’t fit in, but not quite sure why? Despite having a high IQ, you feel like you are a ‘problem child’ because of your behaviours. Today I talk to an adult on the spectrum:  a storyteller. He weaves stories through his words, music, and photography. He is a super cool dude, and I can’t wait for you to hear about him and his outlook. 

As much as I’m an absolute advocate for being who you are, I still in my deep gut and heart know that we all have to modify a bit to relate to each other. It doesn’t make it wrong. To be authentic. (I moved) from being a victim to it’s a choice how I interact. 

Reinier has led an interesting life and has a unique perspective. We talk about his journey of self-reflection. How his high IQ masked his disability and the lengths he went to trying to figure himself out - and how it all changed when he found out late in his life that he was on the Fetal Alcohol Spectrum. This interview has a lot of metaphors and contemplation, including:  

• How a DEVO song led him to the realization of the mask he was wearing. 
• Why he explains he is like a car with a 5-speed transmission – missing third gear. 
• Where he was when he had his aha moment that changed his life. 
• What he discovered when he changed the lens on his view of himself. 

“Why can’t I be normal, was my universal mantra for 5 decades. Now it is, I don’t want to be normal. My job (now) is to re-inspire people that you are dealing with a conscious being and their brain is not a signifier of their ability of consciousness. Neurotypicals don’t know how hard someone with FASD is working.” 

This episode is full of stories. Stories about changing his name, conversations with his mom about alcohol use during pregnancy, how getting a diagnosis cleared up wasted life energy and what his philosophy of below the neck and above the waist living means. He has advice for caregivers and explains how he views his role in advocating for and supporting other individuals with FASD. 

There are so many metaphors and wonderful stories in this episode that I am sure you will find something that fits with your philosophy not only as a human being but as a caregiver or an individual on the Spectrum. Let me know what your favourite quote, story or piece of advice is. 

Show Notes: 

Home Page - AwesomeAwareness.com 

HOME - brillianteye.ca 

Home - C3inc 

Email: reinier@brillianteye.ca 

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