I’ve talked about autism many times, but I’ve never been completely honest about its complexities. I have told and retold the story of my brother’s life with ASD in order to simply send across the message that “autism exists”, but in an era where there are more ways to send messages than there are to speak, it’s easy to tell the world that something exists. I’ve been saying saying the wrong things the whole time.
Over the last three or four years, I’ve had the pleasure of meeting siblings of autism and finding an immediate connection. I recently introduced two women I know to each other – both of whom are now friends of mine – and these women could relate to the things I saw in my own household with almost no exception. They know the autism that no one outside of our families has ever seen.
Yes, there’s an autism that you have never seen.
Everything I talked about, they understood. They’re both the eldest sisters of young men who live with autism and more than anyone, they understand the battle of growing up trying to adapt to, understand and love the diagnosis. We never really reach an end point. We also can’t love autism 24/7, because it’s an endless learning process; it’s a challenge folded into countless brutal and beautiful experiences. When we speak of awareness, we speak about the autism no one understands except for us. We speak of the danger(s) of people thinking they know, and offering sympathy on the basis of assumptions. When I ask for awareness, I’m not talking about the seemingly functional autistic characters that we’ve seen on television.
No … I’m not talking about Rain man or I am Sam or Snow Flake, I’m trying to fight the social practice of oversimplifying the diagnosis to rocking back and forth, being good at math and minimal eye contact. I’m talking so much more than that.
I will no longer lie about how real, raw and relentless autism is.
The conversation with my friends, Sara and Faduma, wasn’t sugar coated, they know exactly what I mean when I say autism is an emotional and spiritual journey. For siblings like us, it’s a relationship that needs nurturing, faith, self-assessment and so much patience. It has everything to do with who we are as women, and even more to do with the women we are trying to become. We laughed knowing that the stories we shared helped untangle the knots that we’ve had in our chests for many years.
I think awareness needs to especially be about saying the things we are often conditioned to keep as secrets. Autism is not a secret; nothing about it should be concealed, and I mean nothing at all. In my late twenties, I’m still building the courage to tell my brother’s stories as openly and as proudly as possible, and it’s a lot of work. The autism I’ve known in my home is continuously redefining my views on love, passion, relationships and dreams. It’s slowly forcing me to change my comfort zones and it hurts. But I couldn’t be any happier about that level of growth, even if it comes with a little bit of pain. Very few siblings have what we have, and regardless of its nature, autism is something special, and it’s ours.
My brother has spent years changing me – and my brother and I don’t have conversations. We don’t share stories of our relationships, news about our jobs and we don’t argue – but we know each other with an indescribable perfection. We have a bond that doesn’t require words, in fact, our love never needed words – I’m finally understanding that it’s because our love has no questions. I stopped asking questions and I stopped wondering why, because autism is not in need of a ‘cure’ or a solution. In order for real awareness to exist, people need to stop asking ‘why’ there is autism.
My 19-year-old brother, my baby brother still eats with his hands when he feels like it, and I will never ask why. My brother uses scissors to cut his food, and I mean all his food: his hot dogs, his sandwiches, even his pasta – he won’t eat anything otherwise, he finds comfort in knowing that his food is a product of his own craft and the sound of scissors gives him appetite. Who am I to deny him that right?
My brother – like both my friends’ brothers, has run out of the house, in broad daylight and mid-evening, and in negative degree weather, with no shoes on and no destination in mind. He just ran without worries. Oh … and that’s shoeless on a good day, on a real day, he could bolt out of our home with no clothes on. And I won’t ask why, because so what if he needs to feel free for a change?
These siblings know what it means to have 5 different locks installed on our house doors, keys to our bedrooms with hiding places for our expensive things – because laptops and kitchenware have gone flying in all directions. With these ladies, the stories needed no elaboration.
My brother will hum a Christmas Carroll when he’s edgy, and we know that it’s the prequel to a meltdown, why would I ask questions when all he’s doing is singing to express his pain? It’s such an essential part of his character. My brother has never been to a fancy dinner or a family function and he hasn’t seen our extended family in almost a decade. My brother doesn’t need physical proximity, he knows exactly what he feels, and he’ll hug only when he feels like it and when he means it. He can’t lie, he can’t break hearts, and he can’t deceive.
My brother, who I thought never understood the act of giving gifts, openly embraced me when I bought him new clothes on his birthday and called him handsome, so how people assume that those living with autism don’t understand words is beyond me.
It isn’t true, they understand everything, and they know exactly what they need.
Yes, they can hear you, they can feel your energy and they do get offended when you speak to them like 4-year-olds when they’re teenagers. They can tell when you’re preventing them from being themselves. The awareness we need is that of diversity and difference, we don’t all have the same process of self-expression.
My brother will turn the lights at home on and off for 30 minutes non stop because it’s comforting. In our home, we have the Sponge Bob Squarepants, Super Mario Bros. and the Backyardigans on repeat from 1:39 seconds over and over and over … sometimes for as long as half a day, and we all have the songs memorized.
In my house, we throw a celebration when my 19-year-old brother says all of our names, slowly and with hesitation because he’s really really trying and he wants us to clap for him. Autism isn’t always about words, but when we have that moment of triumph, we love it.
My brother is also a badass. Yeah, he’s a badass. He has single-handedly shut down a busy Toronto highway at 7 p.m. and was followed by two police cars simply because no one with him understood why he was kicking and screaming in the van. My non-verbal brother was pinned down by his workers on the ground while waiting for the cops to come and “resolve the issue” – I’m still not sure what the issue was.
My brother’s worker came to my parents’ home yelling that my brother took a leak in her car while she was driving him around, and I didn’t understand why pee was such a problem. My brother is a visionary: where people see seats, my brother sees the opportunity for urinary release. Seriously, she should have been told that autism is as unique as it is unpredictable. Plus, plastic seat covers are always on sale at Walmart.
But it’s easy for us to hysterically laugh at all of this now, autism hasn’t always been funny. Sometimes the tears were not those of careless laughter. My brother is the teenager who tried to run out of the hospital as he was suffering from a stroke because he didn’t care that half his body wasn’t moving. It didn’t matter. He wanted to run again, he wanted to fight the weakness away. He doesn’t have the patience for pity.
Anyone who lives around autism and who truly knows its severity, lives on the hope that they will one day no longer have to pretend to live like a nuclear family.
In my home, we can break out into dance at 9 a.m. because my brother is playing music out loud at breakfast time. I carry my almost 20-year-old brother on my back and chase him around the house in a Scream mask for no reason. We don’t take life seriously all the time. But I honestly don’t know how to believe in ‘normal’ anymore, I don’t think I want anything to do with the idea.
I don’t want the autism community to be a product of preconceived notions and limitations, or for autism to be the outcome of cultural definitions or a receiver of sympathy. The only ones who can try to define it are those who know it, not those who observe if from a distance. As families of autism, we re-understand it daily, and we haven’t gotten over how difficult living around it can be.
I don’t think the knots in our chests will ever really go away.
On some days, when my brother is feeling sick or being fussy, I could give this 19-year-old a bath without batting an eye. I can talk about my brother on a first date because I know it’s real and incredible and difficult and it has everything to do with me, and I now know that difficult can be beautiful too, but I live with a constant fear in my gut because I know some relationships aren’t made for that challenge.
Siblings of autism can recognize someone who lives with it in a millisecond, we know how their eyes speak, we’ll recognize that unwarranted smirk anywhere. We know that a man in his 30s holding his mother’s hand in public, wearing an oversize jacket and periodically grabbing his groin is not harming anyone.
We know the bounce in their steps, we know the head lean and we know those dancing hands way too well, and it’s still not simple. I don’t think I like anything simple anymore; I love songs on repeat, I can handle a day out of sync, I love oversize clothing. Autism is a part of my own being too. The real awareness needed is the understanding that autism will never look like anything familiar. The truth about autism is that it’s something new everyday; a new quirk, a new gesture, a new song, a bigger smile.
For us, it’s a love without limits, and it’s a story without secrets.
I love someone with autism, and I love them better than words. I love autism because it makes a better me every day. It forces me to constantly discover. I love it as shamelessly, as openly and as freely as possible