@AutismSpeaks… #ActuallyAutistic Speaks Back


The one thing I am glad to have learned over the past couple of years is to get off my high horse, check my privilege and support people who know better than me.

By those who know better than me, I don’t mean paying reverence to middle-class, egotistical, faux-left-wing writers who latch themselves onto a populist issue with as much depth as a Mulder and Scully ‘monster of the week’ episode. *cough* No. It means listening to the people who actually know what they’re talking about and live experiences that I do not.

For example, if there is an issue that infringes on women’s rights then I shouldn’t try to lead the criticism, I should shut up and support women giving the criticism. It doesn’t mean we should all be silent, but we should recognise that nobody knows best more than those affected.

As an investigative journalist, the ‘be the voice for the voiceless’ rhetoric is profoundly endemic within media circles. However, shouldn’t we now ‘echo the voice of the voiceless’? For in this day in age, quite a number of those (but not all) considered ‘voiceless’ now have a platform that carries their voice without editorial interference – social media.

And so we come to #ActuallyAutistic – a brilliant example of those taking back control from others who apparently speak for them. Autism Speaks, a charitable organisation set up in February 2005, is:

“the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.” (Link)

You’ll note the bold. Autism Speaks views autism from a pathological viewpoint – it’s, essentially, a disease in their eyes. Here’s an example of their message:

As someone who is not an autistic person, I can only imagine that living in societies and economies that place so much trust and value on what ‘normal’ means must be difficult and fucking frustrating. That’s my privilege in not having to deal with that.

However, the one thing we can all relate to is being very aware of the seemingly constant need to ‘normalise’ ourselves – it affects everyone: from our looks to our behaviors. Yet, through such social policing, we continue in a quest to be ‘normal’ and label everything else outside of this sphere as in need of fixing: ‘weird’, ‘strange’, ‘abnormal’. Both you and I could continue until ad nauseam. Hence why criticism has been directed towards Autism Speaks.

The organisation doesn’t appear to come from the standpoint that autistic people are equals; rather, it views autistic people as incapable of making choices for themselves.

There’s no recognition of the need to fight for the rights of autistic people; rather, the fight is against autism.

I am absolutely aware that there are autistic people who don’t want to be autistic, but that shouldn’t infringe on the mental well-being of those who do not want to be ‘cured’. Note the contrast in Autism Speaks to, for example, the Autistic Self Advocacy Network (ASAN). The ASAN works to:

empower Autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the Autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!” (Link)

Finally, we come to #AutismSpeaks10 – a hashtag to celebrate the organisation’s 10th birthday:

Instead of receiving warm praise for all the work done by the organisation, the hashtag was, instead, commandeered by those identifying as #ActuallyAutistic. In the spirit of what I referred to previously, I think these tweeters can speak for themselves: