Autism peak bodies can get it so wrong

Yesterday, Aspect, which is one of Australia’s largest autism peak bodies shared this link (TW: early intervention, parent feels) on their Facebook page.

This one story forms a larger part of their current fundraising campaign, and it makes me feel icky for a number of reasons.

Firstly, it seems to imply that verbal communication is superior to other forms of communication. If that implication isn’t clear enough in the actual story, it sure came out in what they wrote on their Facebook page when they shared this story. Quoting their words:

“It’s a wondrous experience to hear a child with autism speak for the first time after struggling to communicate. That was certainly the case for Chelsea’s parents.”

Yup, it’s all about parental feels. What about Chelsea? How did she feel?

Secondly, this is the personal story of a child. This child will grow up, and her name together with her parents’ names are on the internet – forever. She will grow up without the choice to disclose her neurology. That choice has been taken away from her.

Thirdly, this story was shared for the purposes of raising funds for early intervention. A lot of early intervention programs can be traumatising to Autistic people. Furthermore, they probably don’t really do much.

I commented on their page. I did it carefully because I wanted to be heard. I tried to use words that would get them to listen rather than silence me. I wrote:

“You know what makes me sad? It makes me sad that verbal communication is positioned as superior to any other form of communication. It makes me sad that these stories always focus on parent feels. It makes me sad that these stories are actually those of real people who’s right to privacy has been violated. It makes me sad that all of the above is done for fundraising purposes.”

I was not the only one who commented with that theme. A few other people had similar issues. I know those people to be either Autistic people, or strong allies. Most of our comments were deleted.

Aspect stated

“Out of respect for Chelsea and her family, to whom we are incredibly grateful for the way they have shared their story to help others, and with reference to our House Rules we will now delete any off-topic or offensive threads in response to this post. We have valued the feedback provided and the support offered, and hope that you understand our course of action.”

They also invited us to call or email them our concerns – because, of course, we have to be the ones making contact with them to raise our concerns after we’ve already raised them.

So, which others did this story help? Aside from pushing Aspect’s fundraising agenda, who did it help?

The problem with autism peak bodies is that they are so entrenched in the raising awareness model of fundraising that pushing for acceptance and understanding appears to be foreign to them. I actually don’t believe that they can make the switch to acceptance and understanding because they would have to reformulate their fundraising plans.

And that makes me overwhelmingly sad.