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.