Autism Awareness vs. Acceptance
What is it?
Why does it matter?
As a former “autism mom” who faithfully lit it up blue during the month of April and searched tirelessly to find all the pieces of the puzzle of my son, I want to take a few minutes to talk about why I no longer do these things… Why I am simply a mom. Why there are no blue lights or puzzle pieces in my home, office, or social media. And why I now advocate for autistic acceptance instead of autism awareness.
“Awareness” denotes the idea that people need to know autistic individuals exist. This goes along with the idea of invisible disability, and the expectations our society places on humans without fully understanding them. Ok, that’s fine. But, incredible amounts of controversy exist around the foundations of this movement (with very good reason). And it doesn’t go far enough.
“Acceptance” brings with it the idea of inclusion and value. It goes beyond awareness and calls us to a higher standard of understanding.
Autistic acceptance doesn’t mean we just accept unsafe behaviors or offer no supports. On the contrary, it means we work with the autistic individual to solve the problems that lead to unsafe behaviors.
Also, it means we offer appropriate supports. Ones that are led by the autistic individual’s needs and what they communicate they want.
Acceptance is about understanding autism is not some “foreign invader” in my child’s body. And it will not be cured. Instead, it is intrinsically part of who they are, a whole person full of value in all of their complexity. And their voice matters.
We all learn, grow, and change (in my mind, one of the greatest aspects of being human). And this is not about shaming those who are not where I am.
Rather, there is validity in the struggle to help our children with autism work through problems causing behaviors that put them and others in danger.
There is validity in the fear that our children will experience unfairness and pain. If you find yourself wanting to cure this “thing” that seems to be obliterating the life you imagined, I get it. I have been there.
But, let me tell you why I’ve changed: listening to autistic adults.
I have listened to adults with autism like My Autistic Soul, who taught me that stimming (flapping, rocking, humming, and other repetitive behaviors that soothe the individual) is both healthy and necessary.
Or a whole group of generous people with autism who give their time, knowledge, and lived experience to offer resources for parents of autistics at Ask Autistic Adults. They taught me that the majority of the autistic community prefers identity first language. But, best practice is to ask the autistic individual what they prefer.
And there are the actually autistic adults (as opposed to the neurotypical people giving information about autism) at neuroclastic.com, who have more thoughtful and educational posts than I can even begin to name here.
For timeliness, check out C.L. Lynch’s 2019 article, “It’s April, So It’s Time to Argue About Autism Speaks.” This is where I learned why autistic adults call Autism Speaks a hate organization and feel outrage over the puzzle piece and blue lights.
Listening to autistic adults has turned my world upside down in the best way possible. Now, I am learning about self-determination and disability justice and the value of neurodiversity. Also, I understand my own child better, and that is deeply good.
Autistic adults are asking us not to just to be aware that autism exists. Instead, they are asking us to accept them for who they are, allow them to stim as a self-soothing tool, and have other necessary supports to live a meaningful and fulfilling life. They are asking us to recognize the gifts they bring to our families and communities, welcome them into spaces as whole people, and not try to change them to fit a neurotypical standard.
And I agree. Acceptance, not merely awareness, should be our goal.
I still have a lot of learning, growing, and changing to do (I hope that never stops), so help me out.
Which autistic adults have most impacted your life?
Who are you learning from?