On World Autism Awareness Day

I write this in response to this day because Autism Speaks does not speak for me or my children. (http://tigerbeatdown.com/2012/04/09/autism-speaks-but-you-dont-have-to-listen/)

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My children have autism. I am their mother.

Usually I’d type out, “I am the mother of two autistics,” but it always sounded selfish to me. I try to modify the sentence so it’s them first, but also they are not defined by autism. My son and my daughter are two of the greatest people I know. They are kind, generous, stubborn, beautiful, talented, intelligent, and they are all that is right and good with the world to me.

When they were first diagnosed with autism at three and four years of age, I remember I wrote this long suffering blog post about “mourning.” Soon after I grew to regret it. I’ve regretted a lot of what I used write to back then. In an internal effort to try to make sense of my struggling with motherhood, I’d forgotten that I wasn’t just around to love my kids and to keep them safe. I am a mother because I chose to bring them into this world and thus it is my responsibility to make sure they can navigate it. Not only that, but I realized that there was no way I was going to let society ever point the finger at their “disability.” My children aren’t disabled. Society is disabled in every single way. I must try to help make a society that is accessible to all, especially to my kids.

I am wary of these type of awareness days, especially when it pertains to autism. Their abilities are treated as freakish and abnormal. Whenever someone posts about an autistic child/adult suddenly singing opera like a pro, or drawing detailed landscapes from memory, or communicating the words,  “I love you,” on a computer, it’s always treated as if it were a “miracle.” Listen, autistics aren’t freaks and they aren’t here to perform a “normal” to you for your amusement. Autistics are human and are as complex and as special as every single one of you out there.

I am also tired of movies of parents of autistics and their struggles. Although I am highly aware and have benefitted from the support that awareness brings to us parents, what about the autistic adult? One day my teenagers will be adults functioning in a world not made to accommodate their specific needs. What of their struggles?

My eldest is a high functioning autistic. As a toddler he’d have meltdowns that would have security in malls called on us and kicked out. There were instances were people would get so fed up with his noise that they’d try and “assist” by yelling in his face. With every ounce of patience in my bones I’d take my son to a safe place away from those people and out of his way yell in their face to see how they’d like it. My son used to make the world hear his confusion. Now as a teenager, he can be awkward, but he’s so funny. He’s smart, handsome, very unaware of the potential in him. He surprises himself every time he’s able to excel at the stuff he enjoys. My son plays guitar and he’s a voracious reader. He’s a stubborn teenager, and his issues are now mostly social navigation (he’s been heavily bullied in the past), but who doesn’t go through that? He’s got friends and takes the bus. Now I try to get used to the fact that he just goes out on his own without me holding his hand or prompting him. My son is a fierce independent.

My youngest is mid to low level autistic. This spectrum descriptor is not at all accurate, but it’s how people understand her. A few hours after I gave birth to her, she turned to me and gave me a huge smile, with giggles even. She’s always been a happy child. With three words sentences she makes her needs known. She bangs her head against the backs of seats, can’t cross the street by herself, stims almost constantly, and can’t stand crowds of people. Certain noises affect her greatly and there’s nothing worse than delays on the subway. She makes brilliant media pastiches on youtube and picks up musical instruments as if she’s known how to play them all of her life. Her intelligence knows no bounds and between her school assistant and I, we can’t figure out how she makes everything bend to her will. I call her Daughtermonster mostly because she always leaves people feeling good about the world. In three words she’s able to bring insightful and honest perspectives. When Daughtermonster smiles, it’s a mixture of mischievousness and wonder. You never know what she is truly thinking, but never assume you do know because you’ll be shown how wrong you really are. She’s a spitfire and a princess warrior. She’s tall and beautiful and although she depends on me for a lot, I can tell that one day she won’t. I’m trying my best to make sure that she will only need to depend on herself.

I am wary of these type of awareness days, especially when it pertains to autism.

Autism Awareness Day is every day for autistics.

To autistics:

Thank you. Thank you to my children for helping me grow. Thank you for being who you are. You are the greatest thing that has ever happened to me. Thanks for the adventures so far. Never change and keep fighting for your right to party. I’m behind you, supporting you in a perpetual standing ovation, all the way to infinity and beyond.

If you are the new parent of an autistic child, I’d like to say this: 

Congratulations! Wipe your tears away. You are about to embark on the most challenging, but amazing adventure yet. Your children will change you for the better and make you stronger as a result. Your children are perfect, beautiful, and amazing people. Try your best to defend them, to advocate for them, and most of all, to understand them in their way. Now I know there are challenges all over the spectrum. I know most of them well. But not all autistics manifest their stimming or behaviours the same way. Each autistic is different and some treatments work and others don’t. You help your child in the best way you can, but listen to them. Listen to autistic adults. They have perspectives that might help you in advocating for your child.

Happy World Awetism Awareness Day. It’s time we all step up to the plate.

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My kids and their dad.

Many thanks and hellos to Farida Peters, Abee Ellen, and all the other parents who share and try their best to make this an accessible world.

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If you’re looking for a good autistic themed movie, I highly recommend Snow Cake.

I welcome autistics to recommend other films or books in the comments.

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One thought on “On World Autism Awareness Day

  1. Thank you for posting this moving warrior mom piece. It really speaks to me as a mother. And as someone with relatives with Autism. And you are absolutely right about those adults over 40 with ASD – most of whom have never been diagnosed. They community still sees them as weird, eccentric, and someone to avoid. Most of them have learned their own coping skills – many of which are problematic in helping them socialize, or find and keep employment. Many have become hermits or loners because no one understands, and our society is too quick to label as odd or strange what is not understood. In fact, the very development of an understanding and diagnosis of ASD, and the reading I have done have helped me understand – and even get assistance for a couple of older people in their 50’s and 60’s who were simply not coping – and not assisted by anyone. The expectation that everyone should fit the so called norm has isolated so many. Carry on mom. Your writing about this subject helps all of us.

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