I was already of the opinion that Autism Speaks is a problematic group. Their message is so dire, bleak, that it seemed pretty clear to me: they are doing more harm than good.
But when the co-founder of AS recently addressed the Vatican and equated autism with leprosy…and used dehumanizing words that infantilize autistics…the group really took their rhetoric to new lows. (Don’t take my word for it…read this transcript of the Vatican statement, courtesy of Unstrange Mind. Wright’s nasty performance here is a perfect example of everything that is wrong with AS.)
But, hey…a new year is upon us. Great time to reflect, identify problems, change course.
With that in mind, I’ve put together this list of helpful resolutions for AS to consider. Think of it as a corrective…as my little gift to you.
Autism Speaks: these are your New Year’s resolutions…
1. We will stop using language that stigmatizes autistics
You do realize…the stuff you’re saying about autistics? That we’re lepers? Burdens? You’re saying that stuff out loud. We can hear you.
Case in point: I’ve been told by far too many parents that they took their autistic child to an event sponsored by AS (a walk, for example) thinking it would be an empowering outing for their family…only have to someone from Autism Speaks address the crowd and refer to autistics as diseased, a burden, a scourge, all while their child was standing right there, taking it in.
Demonizing autism might work as a fund-raising tool…but it’s the opposite of advocacy. It hurts and damages the community. And autistics hear all of it. Kids, teens, adults…they hear every single derogatory word you say.
Stigmatizing autism: this needs to stop in 2015.
2. We will stop spreading false stereotypes.
There’s nothing wrong with discussing the challenges presented by autism. The hard stuff, the difficult situations, the tough days…all of that should be on the table. But so should every other aspect of life on the spectrum. The personalities, the competence…the fact that autistics are human beings who deserve to be treated with dignity and respect- in other words, all of the stuff you leave out…that should be included as well.
By representing only a small, misleading facet of the autism spectrum- by emphasizing only the bleak and (thanks to your phrasing) the hopeless – you reinforce toxic, outdated stereotypes.
3. We will update our rhetoric.
When everything you say sounds like a fear-mongering medical pamphlet straight out of the 1950s, you have a problem.
Our understanding of autism has changed drastically in recent years…yet your perspective is virtually unchanged from the way we viewed autism many decades ago. According to you, autistics are “shut down”, “lost in their own world”…they’re missing, barely recognizable as people (again, if it sounds like I’m exaggerating, do check out Wright’s statement to the Vatican).
That doesn’t mean there are no tough days and challenges to talk about. But it does mean that the mindset of your organization is beyond archaic. The rhetoric of AS represents is out of date and serves only to inundate the public with destructive misinformation.
Autism is a spectrum. Stop hiding that fact. Start educating the public about about what “spectrum” means. Start using descriptions that are current, accurate.
4. We will stop using stats that include ALL autistics if we’re going to exclude most autistic voices.
You like using prevalence rates to scare up donations- “1 in 68 children are on the autism spectrum”, “70 million people have autism”, and so on.
As many have pointed out, the problem is that this statistic represents the full autism spectrum. That’s a huge range of lives and hearts and experiences. And yet, the message of Autism Speaks only accounts for a small percentage of that range (really, none of that range, since their facts are often distorted and misleading).
In a context where AS can so regularly misrepresent what autism is, the 1 in 68 statistic is manipulative. It’s dishonest. It’s selective amnesia for the sake of lucrative donation bait.
If you’re going to exclude so many autistic perspectives, fair enough…but stop using statistics that include all autistics.
5. We will start advocating for the people we actually claim to advocate for.
Your organization isn’t called “Parents Speak…about how much they hate autism”. It’s called Autism Speaks. Try actually doing some advocacy for autistics…not just the very small percentage of hateful people who agree with you that autism is akin to leprosy.
Absorb autistic perspectives…listen to the community. Stop working against the very people you claim to speak for.
These are simple suggestions. Resolutions. Ways to end the harm you bring with every event, every statement, to the autism community.
I personally think it’s too late for Autism Speaks…they’ve eroded their own credibility beyond the point of repair. But, hopefully I’m wrong. No matter who is doing the speaking, we have to do better than this. We have to elevate these discussions, lift them far above the bottom-feeding rhetoric of Suzanne Wright and her organization.