Monday, March 7, 2011

The difference between Autism Awareness and Autism Acceptance

If you're actively involved in autistic self advocacy, are autistic yourself, have an autistic sibling, an autistic friend, an autistic partner/spouse, an autistic child, or an autistic friend, you have no doubt run into an "Autism Awareness" event, either advertised on the internet, or gone to one in your community. They're usually marked by an emphasis on children with autism, a plethora of puzzle ribbons, and a decided feeling that it is not for autistic people at all, but rather, designed for relatives (read: Parents and guardians) of people with autism. These events usually don't take place in autistic-friendly environments, have loud noise, large crowds, and sickeningly bright and flashy décor as part of the package. Usually the speakers will be doctors, parents, representatives from charities, but rarely autistic people themselves. The focus of these lectures will typically be how to curb or mask autistic behavioural traits like stimming, the latest in ABA techniques, or sales representatives for chelating agents and alternative medicine.
Sometimes this isn't the case, but let's face it: Autism Awareness is so 20 years ago.
Back when autism was a relatively unknown thing, occurring in a scattering of families who didn't particularly talk about it publicly or bring their children out to play with others or integrate them into regular schools, an Autism Awareness event made more sense.
Nowadays though, with 1 in 100 of us having some form of autism, the spectrum being recognized as varying from nonverbal to chatterbox, and every teacher, caretaker, doctor, therapist, and babysitter knowing about autism, Autism Awareness doesn't make sense, either as a phrase, or as a marker for an event about autism. The misconceptions are still rapid and widespread, but Autism Awareness doesn't seem to be working towards rectifying the stereotypes. Since the events are typically put on by non autistics for non autistics, they do little to reach out to autistic adults who may be starved for the chance to enrich their lives with knowledge of their disability and resources, or even get a diagnosis.
But an event geared towards Autism Acceptance can make a fundamental paradigm shift in public events geared towards autism a reality. Autism Acceptance forces people to re-examine their prejudices, find out what it means to be autistic from an autistic person, and takes the focus off of curing and more on improving the quality of life of autistic people who need help now in building and maintaining productive, meaningful lives.
So, next time you see one of these events, I dare you to ask the coordinators, either in an email or in person, what they hope to accomplish with their event, and challenge them to rethink doing an Autism Awareness event, and gear it towards Autism Acceptance. Tell them what a difference it could make to reach out to autistic adults in their community by asking them to be involved with their project. Ask them to book an autistic speaker. Ask about putting it in a sensory-friendly environment or making a sensory friendly environment so autistic people won't be alienated from attending.
Or better yet: Put on your own. Start small and work your way up. You never know what will come of it.

7 comments:

  1. Why remove the focus from curing? What about the improved quality of life that would come from cure?

    ReplyDelete
  2. @lurker: There would be no improved quality of life from a "cure". You can't "cure" autism, because it's not a disease. Narrow focus on finding a "cure" for autism has resulted in millions being frittered away in research and development, while autistic people continue to languish without resources such as access to therapists, adult education, job training, and medication. You know, things we actually want and need.
    "Cures" are at most, distractions. Autism is an integral part of every autistic person, and a so-called "cure" would accomplish nothing short of making them a different person, who's lost something big about them.
    Autistic people don't want cures for our autism, we want understanding, resources, and accommodations so we can live happily as ourselves. That's a lot cheaper than some expensive pipe dream we don't want or need.

    ReplyDelete
  3. I would consider cure improved quality of life due to increased ability and what can be done with that increase. The lacking of basic abilities is what is to be cured. I think the concrete material aspects of the problem should be dealt with. Research into it isn't futile, although not all of it is helping. I think the goal is worth it.

    Those resources aren't being provided sufficiently anyway. And funding for cure and resources aren't mutually exclusive. There is only so much those resources can do, and in the long run that costs lots of money. The resources available often are being implemented inefficiently. I've been receiving vocational services for a year now, and still haven't received enough of the practical help I need, and am likely no closer to actually getting a job than I was years ago.

    I don't consider cure as an unworthy distraction. Even if it is an integral part of every autistic, the specifics of that don't constitute the pertinent issue, which is that of functioning. Curing the problems regarding that wouldn't change anyone's personhood. I think it would rather ensure liberty and autonomy. I don't see how I don't need a cure when everything indicates to me that I do. Which autistics don't want cures?

    ReplyDelete
  4. I repeat: Most autistics don't want to be cured, myself included. There's a plethora of pro neurodiversity blogs out there which oppose curing, run by autistic people. If you want proof, I offer you a list of blogs run by autistic people who oppose curing:

    Amanda at the Autism Nonsite:
    http://amanda.autistics.org/
    Erica at Adventures of an Interplanetary Exchange Student: http://earthtoerika.blogspot.com/
    Lindsay at Autist's Corner: http://autistscorner.blogspot.com/
    Luke at An Aspie Revolutionary Writes:
    http://anarchoaspie.wordpress.com/
    Elesia at Aspitude:
    http://aspitude.blogspot.com/
    Astrid at Astrid's Journal:
    http://astridvanwoerkom.wordpress.com/
    Sarah at Cat in a Dog's World:
    http://autisticcats.blogspot.com/
    Clarissa at Clarissa's Blog:
    http://clarissasbox.blogspot.com/
    Elizabeth at Daughter of the Ring of Fire:
    http://blog.elizabethkateswitaj.net/
    The Goldfish at Diary of a Goldfish:
    http://blobolobolob.blogspot.com/
    Rachel at Journeys With Autism:
    http://www.journeyswithautism.com/
    Kat at Katy Doesn't Live in Smithton:
    http://autistickat.blogspot.com/
    Sarah at Kitaiska Sandwich:
    http://www.kitaiskasandwich.com/
    Corina at No Stereotypes Here:
    http://nostereotypeshere.blogspot.com/
    Codeman38 at Busting Myths:
    http://aut.zone38.net/
    Neurodivergent K at Radical Neurodivergence Speaking:
    http://timetolisten.blogspot.com/
    Michelle at The Autism Crisis:
    http://autismcrisis.blogspot.com/
    Estee at The Joy of Autism:
    http://www.esteeklar.com/
    Unstrange Mind at Unstrange Mind:
    http://unstrangemind.wordpress.com/
    abfh at Who's Planet Is It Anyway:
    http://autisticbfh.blogspot.com/

    All of them have wonderful posts about the joys of their living with autism. They range all over the spectrum, from being verbal and independent to being institutionalized and nonverbal and using communication devices. And all of them have made it clear: We don't want your cures, and we don't want your idea of what constitutes a happy life.
    I don't know if you're new to autism blogging or what, but here's a hint: It is never a good idea to tell an autistic blogger what she should and shouldn't want out of her autism, and you should never equate neurotypicality with liberty and freedom, or suggest that our lives are less than just because we can't perform particular functions. It's going to get you into very hot water.
    If you continue to try and push cures in this neurodiverse space, I will break out the curebie bingo. Curebie rhetoric is not welcome here.

    http://www.autistics.org/library/bingo/card-03.jpg

    ReplyDelete
  5. I'm familiar with those blogs. I don't think of the issue as being about neurotypicality. I'm not sure what I'm supposed to do and expect in my situation as someone diagnosed on the spectrum.

    ReplyDelete
  6. I just started an Autism Acceptance Day event on Facebook. Of course, autism acceptance is *every* day, but what with the added hype in April, I've started a day for people who want something a bit different. So far 581 people have signed up on FB, and I also started a blog because non-FB people were asking me to do something non-Facebook.

    Facebook event: http://www.facebook.com/event.php?eid=207480192599697

    Blog event:
    http://autismacceptanceday.blogspot.com/

    Please feel free to post comments, articles, links, to either or both of these. NO person's article or blog entry will be posted on the sites without that person's permission.

    ReplyDelete
  7. @Paula! This is excellent! I'm signing up for both facebook and the none facebook blogging. I think that is called a blog "carnival" but I'm not sure. Thank you for taking such initiative! Bravo!

    ReplyDelete