to the autistic people in the crowd

It was a call for autistic people!

It was a call for autistic people!

In my last post ‘Autistic Voices’, I almost congratulated our State organisation’s (AMAZE) attempt at promoting autistic voices in their ‘SPECTROSPECTIVE’ movie project. I barely discussed that several of the videos submitted and shared were from a carers point of view and sacrificed the dignity and privacy of their autistic children (such as Addie’s video here http://www.spectrospective.com.au/gallery-4.html#). It was disappointing that those few videos compromised the message but I was so used to it that I accepted it as inevitable. However, just today I read this blog post by Jess from ‘A Diary of a Mom’ and I realised that AMAZE could have done better. AMAZE called for autistic voices (stories of autism from an autistic persons perspective) so they should have been the only videos shared. Neurotypical people should not be hijacking our voices. Neurotypical people already get most of the attention on the discourse of autism. Neurotypical people could learn from Jess. I could learn from Jess. Keep spreading your words Jess and amplifying ours, we need allies like you ūüôā

a diary of a mom

I had made a decision. Before I said anything else, I would say this. Even if it were technically only addressed to 3 out of the 240 people in that room, it mattered. And it mattered that the other 237 hear it.

This is what I said.

I did my best to transcribe the words (below) for those who find auditory processing challenging. Any errors are wholly unintentional.

Thank you so much. Thank you for having me here to all of you and Lisa and Maeghan for all of the incredible that work you’ve done here. I hope you guys can take a minute now that you can breathe and appreciate what you’ve done. This is some pretty amazing stuff. Above all, thank you for ensuring that I am sharing the stage with Michele [Gauvin} who will speak for a few moments later. That’s Saturday, April 4, 2015

‚ÄĚ target=‚ÄĚ_blank‚ÄĚ>really important stuff.

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Autistic voices

Our state autism organisation is called¬†AMAZE.¬†According to their website “Amaze is a member-based not-for-profit organisation and is the peak organisation for Autism Spectrum Disorder (ASD) in the state of Victoria. Amaze represents around 55,000 Victorians who have ASD¬†and work for the benefit of all individuals¬†and their families and to promote better understanding of ASD in the general community.”

To promote a better understanding of autism¬†in the general community is a massive task when there is so much misinformation¬†about it. The AMAZE¬†Facebook Page posts are often followed with passionate comments about¬†the sorts of¬†‘awareness’ articles they should and shouldn’t post from¬†neurotypical¬†parents of autistic children¬†versus autistic people. A lot of the comments reflect ignorance and fear. The debates are predictable¬†and painful.

Some neurotypical¬†people, such as parents of autistic children,¬†believe that¬†autism is the worst thing that has ever happened to them¬†or that it creates undue stress on their children¬†so they¬†wish their child didn’t have it and they would embrace a cure.¬†Meanwhile, autistic people¬†who¬†embrace their autistic identity, both their strengths and vulnerabilities, feel that their disability arises from a lack of acceptance and inclusion. Not only do autistic people feel¬†that they are¬†undervalued and therefore discriminated against¬†but that they are a likely target¬†for eugenics through the search for a¬†“cure”.

AMAZE will never please everyone but it should be¬†clear which path favours social justice. Unfortunately, social justice has never¬†been an easy path to take. If¬†AMAZE chose to please the majority¬†(a numbers game) they will be catering to neurotypical¬†narratives of autism, which can often be ableist¬†and unintentionally harmful to autistic people through stigma. If they chose to please the minority¬†they are doing right by disability advocacy guidelines “Nothing about us without us”¬†but they will lose popularity and likely donations to further “promote a better understanding of autism” (ironic).

We can support autistic people AND¬†their families while being respectful to autistic people but¬†the task of helping the neurotypical¬†majority to see that seems enormous. It’s almost as¬†though you need to¬†give people¬†a degree in autistic experiences to understand why this is necessary.

Perhaps AMAZE has decided to tackle the difficult¬†path with their recent attempt at doing something¬†different for the World Autism Awareness Day (autistic advocates would prefer the day to be¬†called ‘Autism Acceptance Day’). Instead of the usual march,¬†sporting blue shirts with the latest prevalence numbers printed on them (we are not a number),¬†AMAZE chose to call for autistic people to video record their stories and send them in. The stories were edited¬†and¬†condensed into a 17 minute¬†movie shown at cinemas in Victoria, on the 2nd of April¬†and available to be watched online or by purchased CD.

The initial call was for autistic people to contribute but a few family members chose to speak on behalf of their child/children from their neurotypical perspective and how it affected them as carers, which was particularly unfortunate in the cases where the children were portrayed as a burden. However, the broader message of acceptance was clear enough for those willing to listen.

I chose to watch the movie online,¬†in¬†the comfort of home, with my autistic sons so that I could expand on different concepts that were raised. Much to¬†my surprise¬†and my boys delight, part of my video recording¬†featured in it (at 14:03 min)*. You can view the¬†edited movie¬†and the individual videos at www.spectrospective.com.au. I’m curious¬†to know if you found that it helped you to understand autism from the lived experience and made you question the common narratives of burden, numbers and cure.

*Although my boys were keen to contribute a video recording of their own, my husband was concerned about their privacy, which I respected, so they did not contribute.