“Autism Speaks.” Such an ironic name, considering the number of autistics and their families who wish Autism Speaks would shut up.
I had concerns about Autism Speaks before, but I have concerns about a lot of autism charities. I often find these charities too dedicated to a singular view of autism and too ready to dismiss and exclude the types of autism that don’t fit their message. That stands true for some self-advocate autistic groups as much as it does for groups advocating for the worst affected by autism; I wish both extremes would just be more open and honest about the varieties in experiences and needs of autistics and their families. I do think it is possible to have a strong message about the realities and needs around autism without denying its diversity, in fact I think respecting and recognising diversity is in the interests of everyone on this planet, just perhaps even more so for groups with more obvious differences in society.
But then an Autism Speaks co-founder recently released a statement about autism through the Autism Speaks website, and it reads like a confirmation of all the worst things I have ever heard about this charity, and upholds some very damaging and distorting views on autism, to the point that I think the statement does damage to families and children like mine. So I want to address it from my own little corner of the world, on my own little blog, to speak for myself and my son against Autism Speaks.
The message we get about autism from the statement is one of utter crisis. Autism is first compared to crises of millions of children going missing or getting gravely ill, both types of events that are objectively terrible and deeply tragic. Just like autism… right? Apparently my family isn’t living because of my son’s autism; we’re breathing and eating and maybe sleeping, but we’re only existing, not living. I’m apparently living moment-to-moment in despair and fear about my son. And apparently raising a son like mine will cost 2.3 million $US (apparently there’s no need to either explain where that figure comes from or how it compares to the costs of raising anyone else’s son). Emergency; urgency; monumental health crisis. WON’T SOMEBODY THINK OF THE CHILDREN!
Oh the irony that the writer asks us to consider what message we are sending, when the message she is sending is just so damaging.
She makes it abundantly clear she is talking about “autism.” “This is autism” she says a number of times. She throws in the occasional “maybe” and the occasional “most,” but almost always she talks about autism as a singularly horrible event. The numbers she uses to scare the public include the whole spectrum from the most severe to the most mild, yet clearly her message of doom, gloom and despair applies to only ever a proportion of the autistic people across America.
How hard would it have been to say “severe autism” when that is what she’s talking about, or some other – any other – way to indicate that what she is talking about is a proportion of the autistic population rather than autism itself? Not only that, but even the most severely affected children are not automatically a cause of utter despair; it’s damn hard work, I know I’ve been there. And that’s another point: Many of our children do not remain in the same severe state as they start out, but the way the Autism Speaks message is packaged clearly makes autism out to be very much like a life-sentence of horror.
Yes the provision of adequate services and supports can and does help that progression and makes autism easier to live with, yes I appreciate that Autism Speaks sees itself here as advocating for the proportion most in need. But no, I do not think the only way to package that message requires lumping all autistics together in this way, labeling them as some sort of horror for both families and societies, and generally scaring the living heck out of any newly diagnosed family.
I think a message of what wonders and fantastic outcomes can be achieved with good attitudes and supports towards autistic people, would have been a far more effective and accurate message. Highlighting studies that evidence the benefits of early and appropriate interventions, and the difference it makes to have a more inclusive educational system and society, is a good approach too. These messages would have given hope and motivation, rather than the better-off-dead undertones that come through their existing approach.
As it stands, their approach divides and upsets the autism community, rather than unites and reflects their lived realities. I don’t see how that is a good thing.
At the end of the day, Autism Speaks is free to package their message as they see fit, and if they think packaging autism as a devastating crisis is the best approach then I suppose we must disagree on what is in the best interests of autistic individuals and their families. I’m sure Autism Speaks provides some lovely and useful services and advocates well for autism families on occasion, but to see such a divisive and deeply negative view-point being proclaimed on their own website by a co-founder, says to me that there is something wrong with the way that organisation views the very people it sets out to speak for.
Maybe Autism Speaks should stop speaking for a bit, and listen to what the rest of the autism community has to say too:
- “Autism Speaks does not speak for my son.” Mostly True Stuff.
- “No more – a letter to Suzanne Wright.” A Diary of a Mum.
- “This is not our autism.” Reinventing Mommy.
- “Autism Speaks does not speak for us – THIS is autism.” Living on the Spectrum.
- “A mouse that roars – standing in defiance of Autism Speaks.” The Autism Wars.
- “Dear Ms Wright, Autism Speaks, and any others out there who may read this...” Mama’s Turn Now.
- “My son is not lost.” Dmitry Laughs.
- “Autism Speaks is not and has never been listening, despite their slogan.” Autism From A Father’s Point of View.
- “A view of Autism Speaks from afar.” The Tumultuous Truth.
- “@AutismSpeaks does not speak for this family.” Yeah. Good Times.
- “I resign my roles at Autism Speaks.” John Elder Robison.