Introducing the Autistic Self Advocacy Network of Winnipeg
April 2 is World Autism Awareness – or better yet, Autism Acceptance Day. Who could tell us more about autism than people who are autistic? So to mark the occasion, we met with members of Winnipeg’s Autistic Self Advocacy Network (ASAN) to ask them some questions. Here’s what they said:
What is ASAN?
The Autistic Self Advocacy Network is a group run by autistic adults whose goal is to raise autistic voices in social and political conversations that affect our lives. We operate under the slogan “nothing about us without us”.
What does ASAN Winnipeg do?
We plan and organize events for the autistic community, both for social connection and for activism related to autism in greater Winnipeg.
Just in the last year, we have:
- Submitted a List of Issues report to the United Nations Committee on the Rights of Persons with Disabilities
- Sent a delegate to Geneva to speak at a United Nations Committee on the Rights of Persons with Disabilities side event on the use of restraint and seclusion in schools
- Created submissions to government consultations on the upcoming federal accessibility legislation and the possibility of Canada signing onto the optional protocol of the United Nations Convention on the Rights of Persons with Disabilities
- Sent a delegate to the National Youth Forum on Accessibility in Ottawa to discuss barriers facing people with disabilities in Canada
- Hosted a vigil for Disability Day of Mourning, an annual event remembering people with disabilities who have been murdered by their parents or caregivers
- Took part in a Vulnerable Persons Standard coalition, working to get adequate safeguards in Canada’s assisted dying legislation
- Presented on the topic of autism in front of the clinical staff at the Manitoba Department of Families
- Had a table at the Autism Society of Manitoba conference in October
- Acted as autistic consultants with Manitoba Theatre Centre when they did Curious Incident of the Dog in the Night-Time, discussing the most accurate possible portrayal of an autistic person, wrote a piece for their program and educational resources, and consulted on their first-ever sensory-friendly performance for their Inclusive Theatre Initiative.
Why is ASAN important to families of autistic children?
ASAN members provide an adult voice to express what it’s like to be autistic. Children don’t always have the words to express what the world is like for them. We’ve grown up as autistic children and are now autistic adults, so we can offer insight and resources to help others understand what it is like to be autistic.
This is especially important as children get older, and services peter out. We can offer support and advice, and show you that your child will be fine. We offer role models and a sense of community.
You’re really articulate and it’s actually a bit hard for me to tell you’re autistic. My child seems to be a lot more affected. How can you speak for the whole range of autistic people?
How can a neurotypical person speak for an Autistic Person? This group is about helping people have a voice. Autism is a lot more nuanced than the one-dimensional range from “high-functioning” to “low-functioning” allows. Even though we may have different abilities when it comes to being able to articulate thoughts eloquently, autistic people still have a lot of other important traits in common. We have similar experiences of the world, and of our own bodies, that neurotypical people don’t have. These go beyond simply being verbal or non-verbal or being able to pass as neurotypical. So we have a lot more in common with your child than you may know.
What are your hopes for the future of ASAN Winnipeg?
We would like to continue to increase the ability of autistic people to self-advocate, and to get autistic voices heard more in politics, as well as in mainstream society. We also want to help build a stronger autistic community in Manitoba and across Canada. We are working toward acceptance – autistic people learning to accept themselves, as well as neurotypical people learning to accept us as we are.
What can I as a parent do to support ASAN?
Donate. ASAN Winnipeg is not yet incorporated, but you can donate to us via the American ASAN Association.
When you donate money to autism-related charities, please watch which organization you are supporting – whether they are actually helping. Many autism organizations, such as Autism Speaks, have very limited involvement of actual autistic people on their boards, and support rhetoric that implies autism is a tragedy or that autistic lives aren’t worth living. There are much better ways to raise awareness and understanding, and that’s why we also don’t like to wear blue on Autism Awareness Day.
Listen to what we have to say about various issues, rather than only connecting with other parents and researchers. Research the Autistic experience and how our brain functions as told by Autistic people. As with any group of people it’s hard to tell what’s really going on from the outside. It’s a lot easier to advocate for and help people if you understand their experience as much as possible. One resource we love is the video blog, Neurowonderful, which has been created by a member of ASAN in Vancouver. You can view their videos here and their Tumblr blog here. You can also go to the ASAN National website here.
You can also help by making sure our voices are heard. Use your power to raise autistic voices. You do have power – with governments, and in your social connections. Rather than speaking on behalf of autistic people, try to give us a platform to speak for ourselves.
What would your group like us to know about autistic people?
There’s a saying that goes “Autism is not a processing issue – it’s a different operating system”. Simply put, this means that autism is not a tragedy. It’s not a disease. It’s just how our brain works. It may be different from the way neurotypical brains work, but that doesn’t mean it’s wrong. Just like a Mac and a PC work differently, but both are ultimately fully functional computers.
Accept all of us – we all have different skills and needs, and everyone deserves acceptance and accommodation.
Functioning labels do not assess my skills or needs. Autism is a wide and diverse spectrum and everyone has a different experience. Labeling people as “high-functioning” or “low-functioning” erases the amazing variety that exists within the autistic community. As the saying goes, “If you’ve met one autistic person, you’ve met one autistic person.” Functioning labels cannot contain us.
Autism is a neurodevelopmental disability, not a disease. It doesn’t need to be fixed. Neurodiversity – the diversity of human brains and minds – is a normal and important part of human diversity, and it should be honoured. There is no one “normal” type of brain, any more than there is a “normal” race or a “normal” gender. Instead of working to “fix” or “cure” autistic people to make us more like neurotypical people, work on accepting and supporting us to live in the world as we are.
Members of ASAN Winnipeg will be at the Autism Walk on April 2. They and their supporters will be wearing red and will be happy to chat with anyone interested in learning more about ASAN.
Many thanks to Baden Gaeke Franz, Maggie Dimock, Randy Delaney, Janine Torgerson, Simon Jardine, Garrett, Rae, and other members of ASAN who participated in this interview.
*According to the group’s preference, this post has used identity first language.