As defined by the Autism society, autism is a developmental disability that can impact a persons social skills, communication, relationships and self-regulation. It’s defined by a certain set of behaviours which affects people at varying degrees, which is why it’s called a ‘spectrum condition’.
Textbook definitions don’t really work for me and my family so this post is about my younger brother, and what autism means for him and for us.
My brother got his diagnosis around the age of 2. His development was unquestioned up until this age, until things slowed down a bit. Being 6 at the time, I can’t recall much of it. Often I look to photographs to engage my memory but these years fall blank as we don’t have much of those either.
The diagnosis was difficult for my family, there wasn’t as much information at our disposal then and we were left with professionals telling us that he would live a ‘less than fulfilling life’. I can’t imagine any parent would take that news well.
I haven’t always been the most informed on autism, how it works or how it plays out. The variation in the type and severity of symptoms is so vast that autism is a ‘spectrum disorder’ but thanks to the endless resources; websites, personal blogs and social media, I’m more informed than I have ever been, and it gives everyone else a chance to know too.
My personal favourite has to be a TikTok account of all things. @paigelayle uses her privilege of being able to speak on behalf of the autistic community as a means of education. It was through her that I learned the damaging effects of using the term ‘high-functioning’ with autism, and how it simply means a persons autism is at a level where it affects the people around them less, completely minimising the problems they might face on a daily basis.
Cases of autism are so varied but with these resources at hand, I’ve been able to understand my brother a lot better. He isn’t the most verbal but he expresses himself in ways I’ve never seen in anyone else. This boy is so full of love and joy. He’s the first smile I see every morning and the last person I like to give a cuddle to every night. In between this, he has so many interests.
In fact, it’s known that individuals with autism often hold special interests, something they have a specific passion for. SPARK for autism found common ones to be trains, maps, animals, video games, comic books. My brothers past interests have been capital cities, flags of the world but his current one is films, damn, that boy can watch films. Certain scenes are on repeat in the house, always.
He’s not always actively watching but he’s certainly listening. His interest is peaked when he’s watching the ending credits, something we didn’t pay much attention to until we found him writing up the entire cast and crew from memory, days later. This is something he’s shown a lot through his teenage years.
He used to sit and scroll through the calendar on my mums phone while we were all busy, and then one day we found he was able to recall what day of the week a certain date was… from 60+ years ago to present day. “Okay, the 5th of March, 1996?” “Tuesday” without a single hesitation. His memory amazes us, there’s something new every day. He applied that to music, listening to songs and recreating the notes on a piano until he could play a song by ear without any difficulty.
I remember he used to watch tv when he was around 8 years old, with an open Thesaurus on his lap, flicking through pages occasionally but only glancing down every now and then. There was one occasion where I was writing a project for school and frantically looking through the pages for a word. In frustration I must have said this word aloud and without a thought, he said “271”. I flicked to page 271 and there it was.
The autistic brain is difficult to explain from a neuroanatomy POV so I’ll break it down a bit. Firstly, we split the brain down the middle into 2 halves/hemispheres. The connections between these halves aren’t as strong in autistic brains, but within this, the brain has significantly more ‘gyri’ and ‘sulci’, the deep folds and grooves in the brain, meaning a larger surface area and more connections/synapses.
So in autism, there is short-range over-connectivity and long-range under-connectivity. In practical terms this means tasks that require multiple areas of the brain (social communication, motor skills) can be a bit more challenging, but in tasks which require a single part of the brain (paying attention to small details, memorising steps/procedures), the autistic brain can excel.
His intelligence, his memory is something we will never stop learning about. My brother might not be verbal but he surpasses most people in ways you couldn’t imagine. We’ve always been scared to see how he might be in the real world, a cruel and ableist one, but in within our four walls, he has always been the source of love and light.
My baby brother is 20 now, can’t call him much of a baby at all really! Often he lives in his own little world, but those moments where he’s let me in have been some of the best memories of my life. Now, we find ourselves singing at the top of our lungs on long drives, dancing around like fools, quoting films and tv shows just to make each other laugh.
When my mental health gets the better of me, I have my own personal little ray of sunshine to cheer me up. Though he can’t communicate it, I know he feels my pain and it hurts when I see him struggling to tell us how he’s feeling. Every day can bring a new challenge but with him in my life, every day is good.
I can’t imagine myself being a big sister to any other kind of kid, and truly I wouldn’t want it any other way.