Written by Ginny Grant
One year ago today, Reframing Autism’s Facebook page was born.
For the two years previously, Reframing Autism had run small Autistic-led workshops. But, with our first grant from the National Disability Insurance Agency in Australia funding us to establish ourselves as a charity (auspiced by Plumtree Children’s Services), we were ready to form a program of activities that would help celebrate Autistic identity, embrace the Autistic community, and empower Autistic individuals.
The launch of our Facebook community heralded our intention to take this organisation – with our messages of respect, acceptance, and empowerment – from our local community in Sydney, Australia, to the wider world.
Within six weeks of creating the Facebook page, we’d gathered our first 1000 likes and were beginning to feel a groundswell of kindness and encouragement beyond our immediate networks. It seemed our growing audience appreciated the messages we were sharing as memes, blogs, tip sheets and more, along with some of our all-time favourite resources by Autistic advocates.
We also published our first webinar, Talking to Children about Autism, by founder and CEO Melanie Heyworth – the first of many informative free webinars available on our YouTube channel. Melanie’s insights were received with gratitude from many parents who were unsure whether to share their child’s Autism diagnosis with them, and if so, how to do it. (Spoiler alert: yes, you should definitely share this vital part of your child’s identity with them and doing so is not nearly as difficult as you may think!) Our short animation based on this webinar, published on our Facebook page in November, has received more than 40,000 views.
In late October 2019, we held our first conference, co-hosted by Plumtree and Reframing Disability and attended by more than 200 parents. An outstanding line-up of Autistic advocates, including Dr Emma Goodall, Dr Wenn Lawson, Katy Reid and Kylieanne Derwent of The Autistic Realm Australia, spoke on important subjects, and we also launched the beautiful self-directed documentary Bouncing Words by twelve-year-old Cadence, which offers a fascinating glimpse into language and communication from the perspective of a non-speaking person. The documentary premiered on YouTube the next week.
By early November we had reached 2500 likes, and it was clear we were lining up (as we Autistics rather like to do) an engaged community of Autistics, their families, and respectful allies.
In November 2019 we also launched our next webinar: Embracing a Positive Autistic Identity by Autistic advocate Shadia Hancock of Autism Actually. We continue to produce free webinars, including What do our Autistic children really need? by Ally Grace of Suburban Mamma and a two-part series on empathy with Autistic Autism researcher, Jessica Harrison.
By January 2020 we had cracked 5000 page likes.
We published a position statement on therapies and interventions in February,which set out our deep concerns regarding any therapy or intervention which attempts to ‘normalise’ Autistic people or suppress intrinsic Autistic behaviours. The position statement has been embraced by the #ActuallyAutistic community and its allies and shared widely.
Also in February, we held our very first live masterclass, with Autistic activist, researcher and psychologist, Dr Jac den Houting, on Autism and anxiety.
By March it was plainly clear the world was facing an unprecedented health crisis in COVID-19. We reached out to support our Autistic community at this time, and have continued to do so throughout the pandemic, recognising from our own experiences that this time of uncertainty, disruption and isolation would have a profound impact on many Autistics.
The Reframing Autism team wanted to try to provide a lift to our Autistic community. We decided to create a new series of short videos showcasing Autistic advocates from all over the world. The videos would cover four important topics: Autistic wellbeing, identity, stimming, and passions. We were overwhelmed by the response from the advocates we approached, including some of Australia’s and indeed the world’s best known Autistic advocates, writers, speakers, and authors, as well as new and emerging ones. In all, we produced 35 short videos, which to date have had a total of more than 90,000 Facebook views.
As the world has seen through Black Lives Matter, activism does not stop for a pandemic, and of course we offered solidarity to the movement and to our BIPOC community members. We also produced some of our own advocacy, joining other Autistic-led organisations in calling for an immediate halt to charity Spectrum Support’s Project Eleos Talisman, an identifying symbol or marker of Autism to be worn publicly by Autistic individuals. Then in June, we published a response to psychologist Tony Attwood’s unevidenced and irresponsible comments on gender identity and Autism, which has been shared far and wide.
From May, we have been part of a collaborative research project with four universities, interviewing more than 130 Autistic adults, young people and their parents around Australia about the impact of COVID-19 lockdowns on their lives, the first major investigation of its kind.
In June, we also launched a brand-new accessible website, rich in Autistic-created content. The site is compatible with screen readers and adjustable text for the vision impaired. It also uses plain language English.
And while we were very, very busy, we couldn’t let Autistic Pride Day slip by uncelebrated. So we reached out to our Facebook community for help, asking them ‘What makes you proud to be Autistic?’ From these responses we created a video, a joyful collaboration involving many of the RA team and their families, viewed by 13,000 people, and an e-book, illustrated by Mandar Nelson.
By July we exceeded 10,000 Facebook page likes.
As we wrapped up our short video series, we moved on to launch a blog series, highlighting the diverse lived experiences of Autistic individuals. We can’t wait to share more fascinating stories in the months to come.
For now, though, our current focus is on our very first parenting retreat, to be held next month in New South Wales’ stunning Hawkesbury region. The retreat is an opportunity for parents with newly diagnosed Autistic children to learn from Autistic members of the Reframing Autism team. We plan to run these retreats biannually in the future. (Subscribe to our database to be among the first to find out about the next one.)
The vision of Reframing Autism has always been to shift the narrative of Autism from a disorder that needs fixing, to effect social change and to empower the Autistic community to flourish. And it is through this very Facebook community, now 12,000 strong since our very first post exactly one year ago today, that we can see that change beginning to happen.
So, happy Facebook birthday to us! We thank you for your tremendous support over the past year and look forward to bringing you so many more authentic Autistic insights, while nurturing and celebrating Autistic identity and culture.