Tyrone Cook
Being Autistic and having several cooccurring conditions is like living with some very unpredictable flatmates! Tyrone Cook shares this light-hearted look at how his autism shares space with epilepsy, deafblindness, and a nervous system that sometimes has a mind of its own, leading to some hilarious (and frustrating) “flatmate disagreements.”
Hi my name is Tyrone, I am 45 years old (will be 46 in August), and I am Autistic. But as well as being Autistic, I have two rare syndromes called PHACES Syndrome and Functional Neurological Disorder (or FND). Because of these two syndromes, my autism shares my body with cooccurring conditions.
My autism lives with deafblindness, epilepsy, cardiac issues, skeletal and nervous system issues, diabetes, and limbs that work when they want to!
Sometimes, just like in an average flatting situation, there will be disagreements between the “flatmates” and the autistic self. For example my autistic self wants to eat its favourite food that has been put in front of me for dinner, epilepsy on the other hand decides “No, that’s totally unacceptable!” Next thing my food is threatened to be thrown everywhere!
Another example of flatmate disagreement is while writing this article. My autistic self was determined to have all these words written and get it in on time, my brain on the other hand was thinking “Nah, she’ll be right”.
There are also times when the flatmates get on just fine too, like they ALL love water. In water my body tends to behave (most of the time, though epilepsy does sometimes get a little too excited, and I will go absent.) In water, my autistic self gets to express itself, but when it’s time to get out again it’s all on because the flatmates know it’s going to be cold!
My heart sometimes annoys my autistic self too. We will be in our happy place and enjoying some TV or getting some sleep and my heart says “I think I will go faster than a racing car.” My nervous system likes to join in too, where I tell anyone dealing with my feet that they may want to stand to the side, or they may get a smack by a foot that unintentionally kicks them!
Yup, my Autistic self has flatmates and if I could share everything that goes on in the “flat”, you would be reading a book!
Tyrone Cook is a legally deafblind, minimally speaking, Autistic Christian from Hamilton, New Zealand. He finds joy in discussing topics like cats and space. His experiences during the COVID-19 lockdown were featured in the publication “Life in a Pandemic,” published by Life Unlimited Charitable Trust in September 2020.