Becoming an Ally of Autistic Self Advocacy

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I’ve been thinking and learning a lot about Autism in the past few months.  A series of several events have brought me back to concerns and questions about Autism over and over again. I’m going to try to recount those events and what I’ve learned from them here:

~~The reactions to the Sandy Hook school shooting and media uproar about Autism and Asperger’s Syndrome left me devastatingly angry and disappointed. I tried to write a blog post or even just a Facebook status update about my anger and frustration that weekend, but couldn’t seem to find the words.  Now, several months removed from my initial outrage, and several relevant life-experiences later, I’m hoping to piece something meaningful together.

~~Without doing some weird, tokenistic “I know someone with Autism so I will now speak about this…” rhetorical move ((or at least calling attention to it as a limited, limiting move but the only one I really know how to make, while making it)): my twelve year old brother is on the spectrum, and my family has known this for about six years now.  I say that to acknowledge that I have a personal investment in these issues, not only a professional/academic one.  This personal investment has distinctly colored my recent discovery and exploration of these conversations.  In response to any useful information or example I find, I ask, how is this applicable or useful to my brother or my family and how can I pass this usefulness on to them or bring them into contact with these conversations somehow? I haven’t taken that step yet. Still collecting information.

~~After discovering, through course readings, that disability studies is an academic field, meeting some awesome people/professors who do this kind of research, and searching around the inter-webs for conversations about these topics, I decided to attend a conference called “Autism Speaks Back: Neurodiversity and Disability Studies” here at the university last week. One of the conference speakers, Jordynn Jack, outlined some of the conversations that went on at the conference and on Twitter.

~~The most encouraging pieces of information I’ve gathered from course readings, people researching these topics, the inter-webs, and the recent conference are related to Autistic self advocacy and the Autistic Self Advocacy Network (ASAN):

  • ASAN takes as one of its core tenants “Nothing About Us Without Us”.  Meaning, that organizations spreading awareness about and support for Autism should be representative of people living with Autism by including those people in their leadership and membership.  ((This tenant alone seems like the penultimate way to avoid the kinds of media mis-representation that so enraged me during the Sandy Hook media coverage.))
  • Important ways to encourage and further self advocacy include connecting young people living with Autism and their families to mentors.
  • Conversations about Autism should take into account the diversity of experiences of Autistic individuals.
  • Being critically aware of and changing the use of language and terms and rhetorical constructions surrounding Autism is an important way to bring about systemic changes in the ways Autism is defined and researched.  For example, using and exploring the term Neurodiversity can be a useful way to avoid approaching Autism awareness through a deficit model.
  • Funding support and services for people living with Autism > funding “a cure.”

Overall, I want to learn how to enter this conversation as an ally of Autistic self-advocacy without committing any serious blunders out of ignorance or out of an overwhelming in-earnest desire to find the best possible resources and role models for my family.

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8 thoughts on “Becoming an Ally of Autistic Self Advocacy

  1. As an Autistic adult, I want to say welcome to you, and I want your brother to know he’s not alone. There are many Autistic people around, there are thriving communities.
    And as for how to enter the conversation as an ally- look at what Autistic people are saying, make sure more people see what we say. Help people understand that we are different, not broken. Help people learn the difference between teaching Autistic people to act less autistic and supporting us, helping us gain useful skills, helping us find coping mechanisms that work for us.
    Welcome.

  2. Hiya!

    As an Autistic adult…we need more people who want to support us & less who want to fix us. Read autistic bloggers. There are a lot of us. Yeah. And we’re awesome. Kinda weird, some of us sound kinda angry, but we’re awesome.

    And I welcome most people who see that, & who use their privilege as a really real person to show that to other people, with open flappy arms.

  3. My brother is also autistic. He is 59 years old and non-verbal. He recently started working with an iPad as a communication device. My 10 year old daughter is also autistic and was non-verbal until age 3 1/2. I feel exactly as you do, Aubrey. You said everything I have been wanting to say, but much more eloquently. I want to be a part of this community as well. I was lucky enough to attend a program recently where Brenda, from the above post and Landon Bryce of ThAutcast and Elizabeth (Ibby) J. Grace, one of the contributing writers in the book “Loud Hands: autistic people, speaking”, spoke and it has changed my life. I am currently reading this amazing book and it is truly enlightening. Autistic people have much to say and we need to listen.

  4. Pingback: The Course Blog, and Beyond! | My Quarter Life Crisis: My Life, My Dog's Life, & Pop Culture Things I Like

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