Hi all:
I've been meaning to share this, and Pooks' recent thread reminded me of how important these types of threads can be with regards to how we think about and talk about autism.
Last Thursday & Friday, I attended the Victorian Autism Conference along with a few members from EB as well. I think we were all there for the same reason: To be inspired and to be informed. Mission accomplished!
Unlike most autism-oriented conferences that have been held in Australia in the past, this one went to great lengths to highlight the voices of people who are actually autistic (which makes perfect sense) -- including a number of people wearing "multiple hats:" autistic + parenting kids on the spectrum; autistic + parent + teacher; autistic + mental health professional, etc. There were also a lot of thoughtful accommodations -- quiet spaces, turning off the hand dryers in bathrooms, starting and ending sessions on time -- to make the event more inclusive.
There was no sugar coating of autism at this event -- in fact, many of the sessions focused on specific challenges that autistic people (and their families) might face. But instead of the "Woe is me" attitude that tends to pervade autism-related events, for the most part, this conference focused on solutions, support, acceptance and empowerment.
There were so many memorable moments from this event that I wish every person who is raising or teaches someone on the autism spectrum or wants to learn more about autism could have been there. It was unlike any other autism-related event I have attended, and I have been to many over the years! The key note speech by Steve Silberman, author of the best selling and critically acclaimed "NeuroTribes" was absolutely spectacular and really set the tone for the conference.
For me, and I think for many others, the biggest highlight was hearing from a panel of teens on the spectrum from The I CAN Network. They all had different profiles -- some were at autism specific schools, others at mainstream; some were quite verbose, others had more challenges with oral communication, they have a myriad of interests and life experiences -- but all had important messages to share.
I'd like to expand on a few of the themes that they touched upon (as did the conference):
* RECOGNISING AND LEVERAGING STRENGTHS: Far too often, the focus of parents, teachers, medical professionals and broader society is on what autistic people can’t do and what their “deficits” are. Rarely do we look at autism through a strengths-based, abilities-centered lens. Every autistic person, every human being -- no matter how high their support needs might be -- has relative strengths and the ability to grow and develop. It's important to presume competence.
* THE IMPORTANCE OF CHAMPIONS: These young people feel good about themselves because they’ve found “their tribe.” Mentoring programs like The I CAN Network, which allows kids and teens on the spectrum to connect with young adults on the spectrum and other peers, can be pivotal. So are the other adults in that young person’s life -- like a parent or a teacher -- who nurture their strengths and believe in their potential, even when they might doubt it themselves. Chris Varney, the founder and Chief Enabling Officer of The I CAN Network, has spoken at great length about the teachers who believed in him, as well as his "unstoppable" mother who refused to accept the doom and gloom prognosis that specialists made when he was a young boy.
* ACCEPTANCE, NOT TOLERANCE: One of the most memorable lines came from 16-year-old Lochie when he told the audience: "Don't just tolerate us...celebrate us." Tolerance of people on the spectrum is not enough. “Tolerate” is what we do when we sit through a boring event or when we manage to deal with the loud party our neighbor has thrown. Acceptance doesn't mean that we sugar coat a person's needs, but it does means embracing the person as they are rather than viewing them as some flawed version of normal.
* LANGUAGE AND MINDSETS MATTER: How we as a society talk about autism and autistic people matters. The media often portrays autism in doom and gloom terms. There are parents with very public blogs or platforms who vent about the "burden" of raising a child with additional needs or who share their child's most vulnerable moments with the entire world. There are people who actively promote myths of "epidemics" and "cures." There are ways that we can fight for accommodations and better support for our kids and families and adults without demonising autism. Our kids are listening, and the mindsets we as a society hold and words we use make a difference in how they view themselves and how they world views them.
* THE REAL EXPERTS: If we want to learn more about autism, we need to consider the input of people who are actually autistic. I'm sure others who were at the VAC can attest that the insights from autistic young people and adults is precisely what made the conference so powerful.
I left that conference feeling more hopeful and energized than I have in a long time. With young people like these helping us "re-think autism," and with more and more of us parents and teachers and community members listening to what autistic people have to say, I believe we will see some fundamental shifts in terms of how our kids and all other autistic people are viewed and treated by society.
I think there is a real opportunity for us parents to be major allies in this cultural shift, and I hope we will take that opportunity to do so.
I wish I could have bottled the energy and spirit from the conference because it was that powerful.
The I CAN Network is putting on a fabulous professional development day in Melbourne in November -- I will share details in a separate post on the "Education" board in case anyone wants to pass along to their own school or friends who are teachers.
Cheers,
BMJ
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- To learn more about The I CAN Network (currently doing a lot of work in Melbourne & SW Victoria but also expanding), please check out:
http://icannetwork.com.au/
- To read the full April series of "Humans On The Autism Spectrum," including Lochie's profile, please check out:
http://icannetwork.com.au/humans/
- To see Chris Varney's very powerful TEDx presentation, "How My Unstoppable Mother Proved The Experts Wrong," please see:
https://www.youtube.com/watch?v=T1HQKB2txgY
- To see Steve Silberman's wonderful interview from last Friday on ABC News Breakfast (great to have an informed interviewer), check out:
https://www.facebook.com/breakfastnews/videos/10154019021653983/?pnref=story
It looks like the 2017 Asia Pacific Autism Conference (APAC) in Sydney is also shaping up to be inclusive and reflective of autistic voices, which is great news.