Beyond The Spectrum
A serious developmental disorder that impacts the nervous system with variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour.
Growing up with an autistic sibling, I’ve always wondered how different life would have been if he wasn’t on the spectrum. My brother was diagnosed when he was three, I was seven. While I barely understood what was going on then, most of my childhood memories have been about taking care of him. His experiences were my experiences, his pain was mine, his wins were shared, his joy was my joy and yet no amount of observation, research and hospital visits helped my family truly understand how he viewed the world or what it is like for him to go through life. All we could do was gather all our strength every day, acknowledge his struggles and do the best we can.
Autism isn’t linear. Every person with Autism is different. While most have issues that come under a common bracket of Autism, the strengths and struggles could be so different and the severity could vary. It’s why it is called a spectrum.
My brother has many sensory issues and unique needs we have to cater to. Crowds are torture to him, with the intense claustrophobia. Loud noises are his poison. His dietary needs are specific. Everything needs to be on schedule and WE HAVE TO STICK BY IT, NO MATTER WHAT. Bright lights are scary for people like him, it feels like a needle through their eye and they tend to make him disoriented since he is more sensitive to this than us non-autistic folks. Change is hard for him, every small step needs to be verbalised to him multiple times until he internalises it. Communication is a challenge, he can’t speak coherently, and he is mostly non-verbal but he tries. He is very dependent on us for basic day to day activities from eating to bathing to wearing his clothes.
Every time we decide to take a trip, or even go out for the evening - the anxiety is real. The endless what-ifs, “What if he falls sick?” “What if he doesn’t like the weather?” What if he has a meltdown from loud noises?” “What if he doesn’t get the food he’s meant to according to his dietary restrictions?” “Is this place too crowded for him?” Do we have a doctor’s contact in this city?” Have we packed his medicines?” “How do we handle someone saying something ableist about him?” “…should we just stay home?” The world doesn’t make it easier for us either - “Some families should learn to control their children”, “So uncivilised”. “Is he *insert the R-word*?” So do we deprive him of the simple joys of life? Of travelling and seeing new places, eating his favourite food at the restaurant, watching a movie he enjoys, going to the park, going on a drive, playing catch - no matter how difficult some of those things were for him and us, he deserves to have those experiences just like the rest of us and the society was never equipped to help us help this child.
My brother’s needs and problems were different and society isn’t yet tailored to make space for “different”. The social stigma follows us everywhere. I’m happy there is more awareness now than 15 years ago, but have you personally made the effort to understand or learn to contribute to these autistic individuals' well-being? Because knowing about Autism through some cousin’s neighbour’s brother in law’s kid who is “different” isn’t enough.
April of every year is Autism awareness month, which is now called Autism acceptance month. This shift in vocabulary is important because it is one small step toward inclusivity and a huge leap of faith that society follows through on creating a safe space for Autistic individuals and their families. We don’t need your sympathy or pity. We don’t need more ableism. We just need some effort in making this society a well equipped and safer space for these individuals and your willingness to educate yourselves. Come with an open mind, heart and kindness.
Here is me, trying over and over again, every year- hoping my words will make a difference. That difference will help families like mine. It will help people like my brother because every day that we don’t fight to integrate them into our society and make their lives easier is a missed opportunity to make this world better.
This is Varshini Raaj signing out.