Autism Speaks has been talking for ten years now, without pausing to first listen in any meaningful way to #ActuallyAutistic people. The ongoing hoopla of #AutismSpeaks10, the online birthday party AS tried to throw itself as a prelude to its eighth annual International Autism Awareness Day, reminds me that most people — unlike me — don’t talk about autism 24/7.

Then again, my position is unusual. I am the autistic mother of an autistic son, and a special education advocate. In my world, dialogues revolve around autistic rights and responsibilities, collaborative discussions between many people including other autistics, our families, and the professionals hoping to walk with us bolstering our choices and easing our difficulties en route. Amid the flood of words, this is what I have learned:

Speaking is good. Listening is better. Deeply understanding is best of all.

It took me until my adulthood to grasp this concept. When I was a little girl, I often spoke before listening, saying stuff that got me in trouble with audiences of all ages. Conversational gems such as “I bet my vocabulary is bigger than yours,” rarely went over well. Moreover, I couldn’t fully hear responses. Not that I wasn’t listening; I was listening as hard as I could, every minute of every day, but between the auditory processing difficulties and uneven social skills inherent in my kind of autism, I found it almost impossible to grasp my conversation partners’, words much less the subtext of those words.

I almost, but not quite, sympathize with the sentiment behind #AutismSpeaks10, an orgy of self-congratulation by the most recognizable and heavily funded organization that purports to help autistics like me and my son. I get that it’s hard to hunker down and listen to people who bring a message you don’t want to hear. When I was AS’s age, I couldn’t hear such messages, and when I eventually could, it was only with the support of many neurodiverse allies. By contrast, it seems to me, that AS is purposely sticking its organizational fingers into its institutional ears. I know I’m not alone in this impression, because I’ve been participating in some of the autistic-led online counter campaigns, like #ActuallyAutistic and #HighFunctioningMeans.

I, unlike AS, do not presume to speak for every autistic’s most profound area of disagreement with the organization. There are various frustrations, all of which share the common theme that Autism Speaks needs to change its ways. AS needs to show that they are listening to us by acting upon the expertise we keep offering and they keep rejecting.

Some of us focus on legitimate protest of Autism Speaks’s unending natter about cures, because most of us don’t think of ourselves as sick. Heaven knows, I can’t hold onto a shred of self-esteem, much less engender self-confidence in my treasured son, if I relentlessly look at us through a lens of pathology. What concerns me most in my various roles, however, is not as much the names AS calls us, as where the organization’s money is going, to whom and how it could be allocated more effectively.

I’ve been listening, really listening, to Autism Speaks speaking for ten years now, and I see good reason to question their priorities. When they say they support Autism Education, I hear a pitch for Light it Up Blue, their annual public autism awareness campaign, which neither informs nor materially supports the funding of the respectful, individualized schooling my child is entitled to by law. His day-to-day services, fueled by our careful cooperation with his therapists, teachers, and school administrators is the foundation for his future independence and ability to serve a community that fully values him. Autism Speaks does not include significant support for these home and school-based services in their mission.

Other Ways to Support Autism Advocacy

Autism Society of America |
 What they do: Yearly conference features numerous autistic presenters, and there are adult Autistics integrated into their core staff and advisory panels. Why donate: consistently proven itself interested in what we Autistics identify as our own needs.

Autistic Self-Advocacy Network  What they do: Public policy advocacy, the development of Autistic cultural activities, and leadership trainings for Autistic self-advocates.Why donate: They are an autistic-led organization and largely unmatched in the amount or quality of legislative advocacy they do.

Autism Women’s Network | What they do: Work to develop more inclusive, accessible communities and opportunities for Autistic women, as well as call for the zealous prosecution of hate crimes against disabled people. Why donate: They are an autistic-led organization and support female-specific Autistic needs.

Personal-level donations to local schools vetted and approved by Autistic adults | What they do: Educate autistic students in your own community. Why donate: It supports students blossoming into self-advocates, learning to determine their futures based on their special interests.

When Autism Speaks says it supports research, I hear about their (to me, unappealing) image of far-future generations free of the neurological makeup intrinsic to what makes me who I am. I’m more interested in my son, and our present and immediate futures, rather than the almost-impossible-to predict fates of people who won’t be born for many years. I’ve heard not a whisper from AS about research targeted toward providing immediate, deliverable employment, housing or medical services to current generations of my autistic family.

I haven’t given up listening to Autism Speaks, because it doesn’t seem productive to talk back when I haven’t at least tried to understand why they say what they say, disingenuous as I often find their language. Maybe someday they’ll reciprocate and show by their financial decisions that they are finally listening to me and others who share my belief, at which point maybe I’ll even donate to them. Until then, though, they’re not getting a dime from me.  Here are a few organizations I’m more interested in supporting instead:

My own childhood underlies my decision to never tell my autistic son that he needs to listen harder. He’s already doing the best he can. He’s calmer and more observant than I’ve ever been, so I assume he picks up on more meaning than most people credit him for. I’m trying to follow his example and hope now that he’s taught me better, I can do better myself.  So I challenge AutismSpeaks to do the same. Whether autistics talk through spoken language like me, or rely on alternate forms of communication like my son, we are worth whatever effort it might require to fully understand us, and to listen to us.


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Categories: Disability + Disability Advocacy