My Autistic Daughter Doesn't Need Your 'Awareness'

Jody Allard

Jody Allard
Jody Allard

April is Autism Awareness Month and it's almost impossible not to be inundated with puzzle piece symbols and requests from organizations like Autism Speaks to "Light It Up Blue" for autism awareness. As the mother of two autistic kids -- one of whom has substantial support needs -- I realize you might expect me to be a fan of these awareness campaigns; after all, any publicity is good publicity, right? Wrong.

It's hard to imagine there's anyone left out there who hasn't heard of autism. There is a new Muppet on Sesame Street with autism, who actually reminds me a lot of my own daughter, and every day there is another article or essay in the media about autism. But despite all of this awareness, there hasn't been a corresponding increase in acceptance of autistic people. And, unfortunately, organizations that focus on autism awareness are partly to blame.

When these organizations talk about autism, they often use language like "tragedy" or "epidemic" to describe people like my daughter, and they promote the damaging idea that autistic people are a problem or a puzzle to be solved. Autism isn't a disease to be cured like diabetes or cancer. Many autistic adults say autism shapes their identity and makes them who they are -- and they have no desire to change it, regardless of how much support they need to communicate or survive in a world that isn't optimized for their neurology. That's why many autistic adults say they prefer identity-first language to describe their autism; they are autistic, not a person with autism.

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My oldest son is also autistic. He's 19 years old now and I was surprised when he told me that even if he could change his autism, he wouldn't. He recited all of the ways in which not being autistic would make his life easier, but he also told me all of the things he thinks his autism gives him, from his deep love of computer programming to his ability to focus on his passions for hours. He's realistic about his challenges and support needs, but he is happy with who he is. 

I'm proud of my son for having the courage to love himself in a world that tells him he's broken and flawed. But even more than that, I'm ashamed of autism awareness messaging that prioritizes pathology over humanity. My daughter and my son aren't research studies, they are deeply valuable individuals -- and there's no room for them in any movement that fails to see them in their entirety.

Jody Allard
Jody Allard

This doesn't mean I have any illusions about the challenges of autism. My days are bookended by therapies that help my daughter communicate, interact, and build confidence in a world that batters her senses more than I can imagine. Her special education team at school has done their best, but she still struggles to tolerate a public school environment and I'm in the process of making a difficult decision about her placement next year.

My days begin with meltdowns and end with meltdowns, and these are immense challenges that I still wouldn't trade, because my daughter is kind, artistic, and funny. She is the first one to cry when someone is in need, and she is overwhelmed by the depth of the empathy she feels for the people around her. My daughter wouldn't be the same person without autism, but you'd never get to know her if all you heard was autism awareness rhetoric that painted her as a failure of genes, environment, or parenting.

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Autism awareness organizations like Autism Speaks will gladly take your money, but the bulk of it goes to research for a cure -- a cure that doesn't exist and that autistics may not want, even if it's developed down the line. Of the more than $1.3 billion spent on autism research between 2008–2012, only 2.4 percent went to research on services and supports, while the amount dedicated to investigating the needs of autistic adults was only 1.5 percent. The real impact of the push for a cure is fewer resources devoted to finding the support autistics need today. 

I've often said my daughter is lucky. Her classmates go out of their way to include her, and not a week goes by that I don't find stickers or a drawing in her cubby that came from a classmate as a gift. I used to take these as signs that my daughter's classmates accepted her, but one day, as I watched her turn away as they spoke to her, I realized they've done anything but. They've accepted her into their world, yes, but they've never gotten to know hers. Perhaps it's never occurred to them to try because they've never seen any adults model that perspective to them.

Acceptance is about more than a willingness to "allow" autistic people into shared spaces. At its core, it requires more of all of us. It requires us to step outside of our own neurology and try to understand someone else's. It requires us to have the empathy we claim autistics don't, even as their empathy overwhelms them.

So this April, spare me the autism "awareness" memes. Don't donate a dime to Autism Speaks. Instead, seek out the words and company of autistics, and give them the acceptance they've always deserved.

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autism, special needs moms