MATTHEW TAYLOR

This story is about my brother. Jack is severely autistic. He has very little in the way of spoken language, and so I feel like I need to use this platform as a way of speaking up about his experiences on his behalf. Everyone who has autism experiences it differently. Some traits are more common than others, but it is immensely nuanced. Jack’s quirks are roughly as follows: he enjoys being in a strict routine — and becomes very stressed when that routine is broken. He enjoys specific food in a specific way, and he has an insatiable appetite. He repeats dialogue and noises from songs, videos or books that he likes in order to ease his anxiety. He also likes to carry certain objects and dress a certain way in order to reduce his anxiety further. Jack sometimes struggles with concepts like empathy, privacy, sharing and politeness. He also has obsessive-compulsive disorder. Needless to say, he requires a lot of time and attention.

 

It’s weird writing this all down because, for our family, this is all our normal. He’s my brother, and I love him. He shows affection in his own small way, whether it be a small hug or a smile, or a simple “thank you”. It all feels so normal, but that also doesn’t mean it is easy. My parents took (and continue to take) the large majority of the care work, which is immensely stressful for them. The simple routine of going to bed for any regular person is a fairly quick one, but for Jack, can take up to five or six hours. The prep for bedtime used to have to start pretty much as soon as he was back from school. Their determination to take as much of the stress and pain from me as possible is what has allowed me to flourish and become who I am today.

 

Throughout my teen years, I will openly admit that I wasn’t as understanding of Jack as I should have been. I wanted privacy, but his OCD meant that every door had to be open as wide as it could go. We managed to teach him that at night, doors should be closed — but to Jack, this meant that he had to slam every door to make sure that it was as definitively closed as possible. I despised some of his habits, I was really sick of living with him. The years and years of Jack finally going to sleep at 3 AM after slamming doors for hours were awful. But for my parents in the next room, it must have been even worse - and then for Dad to wake up for work at 6 AM and do it all again, I never grasped how they had seemingly infinite patience.

 

I think I was about 16 or so when I snapped out of my teenage angst and my attitude towards Jack started to shift. I had spent the day in Birmingham with one of my best friends and was travelling home. I remember I had left my key at home. Mom was in looking after Jack, so I knocked on the door. I waited and then I knocked again, a little louder. Mom ran to the door, fumbled with the latch and through tears screamed, “Jack’s having a seizure!”. Everything was a blur. I faintly remember propping his head up with a cushion, Mom trying to hold his head still whilst he was thrashing, his eyes were glazed over. He came around a few minutes later, achy and very disorientated. I remember Dad rushing home from work, paramedics, it was all terrifying.

 

Since then, Jack has been diagnosed with epilepsy, which is disproportionately common amongst severely autistic men - usually after they go through puberty. He’s had many seizures over the last six or seven years, but I remember that one the most vividly. It made me realise how, even though he is a little strange, it would be infinitely stranger to not have him around anymore. For just over a year now, Jack has been living in a fulltime residential home, looked after by care workers who understand him, accommodate for him and help him navigate the world in his own special way. My parents struggled to adjust to living without him – to have the axis around which you revolve suddenly shift one day was really tough, but I think they’ve found a happy medium where Jack is growing, and they have a little time for each other once more.

 

Mom spoke to me recently about enjoying everything twice. Jack has lost his liberty and has never been able to enjoy moments of solitude - and because of this, I should jump at every opportunity I get. I hope to spend the rest of my life living enough for the both of us, and I hope when the time comes for me to be Jack’s primary carer, I can be as patient, as thoughtful, and as loving as my parents have been.

"I never grasped how they had seemingly infinite patience"

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