April is National Autism Awareness month — an entire month dedicated to educating the masses on Autism Spectrum Disorder, inspiring inclusion and acceptance, and promoting the changes necessary to do both on a national scale. It’s a vibrant time that truly celebrates neurodiversity. It’s also a time where we shine a light on the challenges that can come with living with ASD or caring for someone affected.
My relationship with Autism Awareness is turbulent. Granted, we’ve come a long way since I was first introduced to Autism back in the late 90’s.
MY BROTHER NICK
I was six years old when my younger brother, Nicholas, received his diagnosis. He was two. He’d shown a number of obvious symptoms leading up to it — delayed speech, mismatched emotional reactions, and a fixation on organizing our toys into long, neat lines. When my parents explained it to me, I had two immediate concerns: “Is he going to die?” and “can I catch it?” Once assured that, no, it’s not a contagious or lethal disease, I went right back to being my carefree self, proud to have my own little brother to spend my life bossing around. I didn’t quite pick up on my parents’ worry back then. Or maybe I did, and I just don’t remember it.
Things changed quickly as we got older. Nick never really started talking. Instead, he communicated as best he could through different sounds and behaviors. He also moved around a lot. Through childhood up to today, my brother is always fidgeting or ‘stimming’ — a word referring to specific behaviors that include hand-flapping, rocking, spinning, or repetition of words and phrases, as described at verywellhealth.com. This keeps him active and healthy(ish) through a poor diet of fried and oily foods. He’s a very picky eater, but it doesn’t just come down to taste. My brother is very particular about textures and presentation as well. In fact, if you were to cut a grilled cheese sandwich for him horizontally instead of diagonally, it can trigger a meltdown thanks to comorbid Obsessive Compulsive Disorder.
Meltdowns are beasts in themselves. The National Autistic Society defines a meltdown as ‘an intense response to overwhelming situations’. While they look different for each person affected by ASD, Nick’s are almost always violent. Specifically, he used to lash out at the nearest person and attempt to bite them. Sometimes there would be warnings — high pitched yelling, rapid stimming with his hands, or harsh grinding of his teeth. Other times, he’d just do it. Either way, it was scary and upsetting. I’ve been bitten about a dozen times over the course of my life, usually on the arm. Other members of our family have endured worse. In fact, he once bit my mom’s face and foot in the middle of the night for no obvious reason. She looked like she’d been stung by an army of bees for a week.
BAD DAYS
There have been standalone instances that taught me to be afraid of my brother — at least for a little while. First, as a child, I remember the night where he grabbed me by the face and refused to let go. He dug his nails into my cheeks until they bled, just before my father was able to rip him away. Years later — I was in my early twenties — I remember being on a Skype call with some long-distance friends. I must have been speaking too loudly because Nick burst angrily into my room. At this point, he was a six-foot-tall, two-hundred-pound adult. He lunged to bite me as I scrambled off my bed, then chased me around the room until my parents could intervene. My father put a lock on my door the next day, and I secured it every single night for three months straight.
Nick has long since learned that it’s not okay to do things like this. Unfortunately, instead of aiming his upset at us, he’s taken to hurting himself. Honestly, it’s worse. There’s a baseball sized callous on his right arm where he has repeatedly bitten himself over the last decade. I’m truly relieved that his meltdowns are fewer and shorter lived as an adult, but that callous is a blatant and heartbreaking reminder of how frustrating his Autism is. Not just for us — for him.
I realize this might paint my brother in an unfair and savage light. I’d like to clarify that Nick is a happy, healthy, and delightful person ninety-five percent of the time. He’s very affectionate with me and my family, and we’ve come to understand his individual methods of communicating over the years. As best as we can, anyway. But, he has bad days just like everyone else. He gets scared, upset, and irritated just like anyone else. He has interests and needs that change over time, creating new challenges to be overcome. He’s also gone through some interesting phases over the years — some more amusing than others. My favorite was the paper-ripping phase. Nick would tear up newspapers and magazines and scatter them around the house like confetti. One time he covered our entire living room floor. There wasn’t an inch of hardwood flooring to be seen. I think my parents would have been angry if they weren’t so fascinated. Other phases included breaking into my vanity and smearing my makeup into my rug. He also had a habit of digging into my candles and chewing on the wax. Once, he poured an entire bottle of conditioner out on the bathroom floor and spread it out like polish. In retrospect, I know it was all a matter of sensory for him. But, to an outsider, my brother was either a complete weirdo or a delightfully eccentric artist in the making.
THEN VS. NOW
That brings me back to my original point — society has undoubtedly come a long way since 1997. Back then, Nick would frighten people at the grocery store by abruptly tearing things off the shelves. We’d get asked to leave movie theatres when he couldn’t keep quiet or sit still enough. On the few attempts we made to visit theme parks, entire families would glare as we used a special pass to cut to the front of the line on each ride. Little did they know we’d have to endure the same roller coaster fifteen times in a row because Nick doesn’t give up on things he likes that easily. He also doesn’t ‘look Autistic’, whatever that’s supposed to mean.
We also collected thousands of stares and remarks from people who sat near us at restaurants. Nick is a very messy eater, so we always made a point to tip generously to make up for the mess he’d leave behind. One woman had the audacity to follow us out to the parking lot and berate my father for his poor parenting. Ironically, this happened at Friendly’s. Women like her and instances like this were commonplace for years. Nobody knew what ‘Autism’ was and, if they did, they didn’t understand it very well. Nick’s behavior was mistaken for temper tantrums or indiscipline. My parents’ exhaustion was looked upon as negligence. Every single person to cross paths with us took it upon themselves to either avoid us or judge us. I took a lot of this to heart growing up. It made me want to be as perfect as a kid as possible to avoid burdening my parents further. It made me very protective of them, too, as well as my brother, especially as family and friends took their respective exits from our lives.
Flash forward to today. It’s April, and Autism Awareness Month brings forward a celebration. Imagine that! A celebration of this condition that has completely shaped the scope of my family’s lives. People approach us with kindness and understanding now, going out of their way to relate to us with their own experiences. ‘Is he austistic?’ they ask, ‘My niece’s son is, too.’ They ask thoughtful questions. They refer us to programs, and charities, and community events that have been tailored to those with special needs. They flaunt bumper stickers, magnets, and puzzle pieces to show solidarity. Waitresses stop us from apologizing for the mess. We belong, and Nick is welcomed into this world with wide, open arms.
So, why would I have misgivings about Autism Awareness Month?
THE DIVERSITY OF AUTISM, AND THE AWARENESS OF DIVERSITY
Autism Awareness and Acceptance has certainly made strides over the years. What some may have once considered a disability — or worse, a burden — is now embraced as an essential part of being oneself. That’s why the subject of a ‘cure’ for Autism has been one of extreme and polarizing discourse. Many both in and out of the Autistic community argue that the pursuit of a cure is an insult — that there is nothing inherently wrong with being Autistic, hence there is nothing to cure. They’re right, too. There is nothing wrong with being Autistic. However, Autism is diverse. So, it’s the diversity of Autism that I feel Autism Awareness Month fails to really highlight.
Let’s look at my brother again. Nick is a wonderful person who I love beyond words. I adore his playfulness, his laughter, and his incredible ability to sing. I mean, the guy can hit notes beyond my range of comprehension with the greatest of ease. He flourishes in this musical family of ours. He’s a riot on Snapchat, too, with a particular affinity for the dog-ears filter. Still, my brother cannot speak. My brother faces a tired ordeal every time he wants to express himself. My brother cannot tell us when he’s upset, angry, or in pain. We will never fully know if or when something is wrong.
There is more to consider. My brother has no peers, or friends, or traditional relationships outside of our immediate family. He has no real hobbies to build upon. He doesn’t understand a lot of what we take for granted as neurotypical people. He doesn’t shower by himself. He doesn’t cook for himself. He will likely never hold down a job or have a romantic relationship. His life will lead him to group home care once my parents are too old to look after him. He would become a ward of the state if, god forbid, something was to happen to us.
Outside of Nick, there are my parents to think about. I can’t itemize the thousands of sacrifices they’ve made to take care of my brother, and to give him as fulfilling a life as possible. My mother gave up her career to be a stay-at-home full-time caregiver. She still is on the verge of 60. My father is still the sole bread winner, too, and together they’ve missed out on a lifetime’s worth of their own relationship. Everything has been and will always be scheduled around Nick and his needs. He is a constant. We don’t regret that — we love him. We’re more terrified of the inevitable day when he isn’t anymore. We have no idea what life will look like beyond it.
This is the case for so many families, and for so many people on the spectrum. These are folks who struggle to be proud in April, and who receive incredible backlash when they express their struggle. It creates ignorance and isolation in a time where we’re supposed to be extra understanding and inclusive.
Be honest — were you really aware?
Neurodiversity is worth celebrating. That is an absolute fact. I simply challenge you to remember my brother when you do. Remember him when you see a shiny ad campaign meant to represent all Autistic people. Remember him when you advocate, and donate, and vote. Remember him so we can celebrate, too.
Also, remember how dang photogenic he is because, wow, so unfair.
If you’d like to learn more, here are some excellent resources on Autism, advocacy, and inclusion:
https://autisticadvocacy.org/
https://www.autism-society.org/
https://www.autism.org/self-advocacy/
https://researchautism.org/
