AUTISM AWARENESS MONTH: NOTHING ABOUT US WITHOUT US!

To some, Autism Awareness Month might mean purchasing puzzle shaped cookies at local restaurants in order to support a cure for autism. For others, it might mean participating in walks, writing letters to legislators, screening an autism-focused movie, or connecting with community members to raise positive awareness. But there are many different kinds of awareness. When I polled several Autistic self-advocates by asking, “Do you feel anything is missing in the big picture of Autism Awareness? If so, what changes would you like to see?” this is what they had to say:

 

Alyson Bradley in Christchurch, New Zealand:

We need national recognition.  This is a hard question for me because I have autistic, mental and intellectual differences.

And I feel it’s time that the links within these neurological differences were united. There is no “one type” when it comes to the autism spectrum. Any list is simply a suggestion, and not representative of ALL individuals on the spectrum, so I feel it’s hard to educate when there are so many varied differences. In fact, “awareness” often seems to complicate and confuse individuals who do not know much about autism (people generally only take any knowledge in part and then label everyone the same). Neurodiversity makes more sense to me. We need a unified recognition of varied neurological differences within society!

Dusya Lyubovskaya in Massachusetts:

I wonder if Autism “Awareness” is the right description. A lot of people know the word autism, but having an Autism UNDERSTANDING Month would make far more sense. Being aware is quite different from understanding what Autism means. If you ask a person about Autism, perhaps they might laugh, or look at you like you have two heads, or say, “You mean like, Rain Man or Forrest Gump?” But there is much more to the topic of autism. It is not black and white, as autism is rather *colorful*. Autistic brains are so colorful! And we are all so different from each other despite our commonalities. Our brains are unique… Sometimes I feel like I am from another planet because I do not understand non-autistic people. And I realize that I do not understand them because what they say is different from what they do, and then I get confused because I think that I am missing something. Anyway, Autistic brains just work differently. And we also might have co-occurring issues (examples: Dyspraxia, face blindness, etc.) But because we look at the world differently, we are more AWARE of our environment–we are more able to see the colors and shapes of our environment. I cannot always say the same for non-autistic people… And I have so many thoughts that I do not know how to verbalize! I wish non-autistic people would be willing to look or think more out of the box and realize that we are all different and have various ways of perceiving the world and that that is NOT a bad thing. Please learn to appreciate us Autistics. We can learn from each other and work together to make this a better world for ALL of us.

Katie Miller in Maryland:

Listening to Autistic Adults is missing in autism awareness, in addition to human rights issues.

Meg Evans in Ohio:

What’s missing from autism awareness? At first glance, it seems an odd question. Autism awareness is all over the media, making clear the need to address significant problems in many areas – education, employment, community services and supports, and more. Everywhere we look, it seems there’s some new autism-related initiative. With so much attention being paid to autism, how could anything possibly be missing?

Awareness campaigns, however, can cause the public to overlook the real people they’re about. Autism ends up being perceived as if it were something separate from the person – a collection of problems to be dealt with, rather than a group of people in need of understanding and accommodation. What’s missing, all too often, is the willingness to simply listen to the concerns of the Autistic community in a quiet, nonjudgmental way. The din of autism awareness has gotten so loud that the voices of real Autistic people sometimes can’t be heard above it. If members of the public, instead of simply contributing money to an awareness campaign, would take the time to sit down and talk with Autistic people in their communities, I expect our society would move a lot farther toward acceptance.

Melody Latimer in Texas:

Autism Awareness has so far been about making everyone aware of all the hurt and harm that befalls a family with an Autistic child. There has not been enough on what the faces of Autism look like. The outcomes of Autistics are often overshadowed and ignored. I was diagnosed in adulthood, but in college, I had a friend. She was diagnosed Autistic when she was a toddler. She got all the interventions. She got all the care. Now she has a degree, she’s married and just had a beautiful baby boy. Where is her story?

Once families accept their child’s Autism, they can move on to helping them. The results for those who gain intervention and help–even an Autistic individual with profound support needs–is a LOT better than anyone ever makes them out to be. Even for those of us who are diagnosed as Asperger’s Autistic and had no intervention have better lives than most awareness campaigns make out. The problems we most commonly face are not because of our disability, but because of the perception of our disability or our differences.

Paula C. Durbin-Westby in Virginia:

Accepting autistic people as we are is one glaring omission from the mainstream of autism awareness. Many people have, over the years, promoted a different sort of “awareness,” one from the positive end of the “awareness spectrum.” For the first day of April I launched a (mostly) Facebook event called Autism Acceptance Day. Over 1200 people have signed up so far: the event has become more than one day, and is ongoing. The number of people interested in supporting an event dedicated to acceptance shows that people—autistic people, parents, families, teachers, and friends, are tired of the now-stale alarmist rhetoric about autism being a “devastating disorder.” Acceptance of real human beings, with all our quirks, disabilities, gifts, personal preferences for how we live our lives—that is what has been missing from the big picture. The efforts of those of us who see autism as something other than a set of dire statistics to be aired out once a year are steadily gaining ground. My hope is that one day people will approach autism and autistic people with more understanding and more respect for our differences and disabilities.

Savannah Logsdon-Breakstone in Pennsylvania
:

I think there’s a lot of focus on Parents of Autistics, and on small children. Most of the awareness stuff this month tends to rely heavily on the pity factor. The counter stuff still has a lot about children, about potential, etc. and I don’t know if there’s much actual acceptance work going on. I feel like too much of it hinges on shaming those with Intellectual Disabilities, and focusing on “Well, look at all this potential some of us have!”

Acceptance of Autistics who maybe don’t have the savant element or high “intelligence” or what have you, it’s kind of made along side the gifted ones, and for those Autistics with co-occurring Intellectual Disabilities, I feel like we rarely hear from them. It is almost like we are so scared of being lumped in and having this blanket statement of ID because of our history, and it makes me uncomfortable. I think we need to nurture spaces for ID voices in the community, in addition to the work we do just around Autistics. I think that it’s the right thing especially once we factor in Disability Justice principles.

Sharon da Vanport in Nebraska (Executive Director of AWN)
:

I’d like to see more autism organizations engaging autistics on a sincere level with respect to advancing alternative communication, education, employment, and community  supports. As par with times past, we entered April with many of the visible autism organizations limiting their awareness campaigns to causation and cure.  Progress in the autism community will be solidified only upon the inclusion of autistic adults in legitimate decision making roles within all autism organizations. This includes leadership and decision-making roles with what constitutes a movement toward formidable and actionable solutions.

With that said, it’s wonderful to see those within the autism community openly embracing autistic adults.  Two in particular are:

(1) Rethinking Autism::  their new Public Service Announcement, Autism Support Group was released on Friday April 1st, serving as a fantastic kick-off to Autism Awareness Month.  The message calls for the autism community to listen to what autistic adults have to say, and to not shut them out.

(2) The Coffee Klatch’s Tweet Chat on twitter.  It was TCK who provided a networking platform for Autistic’s Speaking Day this past Nov. 1st.

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