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>A Long Way To Go: Join us at Autism Acceptance*

April 4, 2010

>This was posted as a comment at The New Republic. While I used the qualifier “if” referring to ASAN, it may appear that I was asserting as an affirmative that “ASAN as an organization does not include the severely impaired within its ranks, within leadership and policy decisions, then there’s a problem.” I’ve been directed to ASAN’s public policy page, which states the following:

“ASAN does not consider any neurological type to be superior or inferior to any other. We do not discriminate against or exclude any Autistic person because of his or her diagnostic category, support needs, or disabilities. We oppose the practice of separating Autistics into high- and low-functioning groups, which incorrectly suggests that people function at the same level across all areas. Each of us has a unique set of skills and challenges; a person who requires assistance in one area does not necessarily lack ability in another. Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities. When ASAN refers to the Autistic Community, we include all people on the spectrum regardless of their diagnostic category or their support needs.

In addition, we use the term Autistic Community to refer inclusively to people who have been identified by professionals as being on the autism spectrum and to those who are self-identified. We recognize that there are many reasons why a person may fall into one group or the other, and we respect the right of individuals in our community to make their own choices in this regard. Many Autistics were given a diagnostic label in childhood or sought a formal diagnosis in adulthood to obtain services and accommodations. Others have not done so for reasons that include financial barriers, lack of qualified professionals in a locality, obtaining sufficient accommodations on an informal basis, or the political view that our community should not have professionals as its gatekeepers. ASAN believes that all of us can and should work together in solidarity to accomplish our common goals.

ASAN’s allies include many family members, professionals, educators, friends, cross-disability advocates, and others who are not Autistic but who support our struggle to overcome ignorance and to ensure equal rights and opportunities for the Autistic population. We seek to promote understanding and cooperation among the various groups that share concerns about how Autistics and all people with disabilities are treated in our society, working toward the goal of human rights for all people regardless of neurology or disability.

Updated 4/7/10

Original Post:

As a roundabout way of getting to my main point, one of my issues with Autism Speaks is that they don’t speak for individuals on the spectrum; appointing Robison goes almost nowhere in rectifying that as Robison is a bit of the able politician as well in that he seeks to get everyone to like him, so that he attempts to straddle all divides, a position, that when not based on the the scientific evidence at hand, is foolhardy at best.

I suppose that if one is speaking only for oneself, choosing to include only those you wish to is fine, but when you assert that you speak for all individuals and yet shut yourself off from listening to them, you forfeit that “right.” If this is indeed the case, and ASAN as an organization does not include the severely impaired within its ranks, within leadership and policy decisions, then there’s a problem.

If ASAN does not represent the entire range of the spectrum, and if Autism Speaks does not, then it seems to me there is a need for an organization that does indeed do that, that is democratic in its organization. It won’t solve the problem in that there will still be divisions, but it might solve the problem in everyone being heard.

We’re trying to set something like that up through the creation of a facebook group called Autism Acceptance (well, truthfully, since December, Kathleen and I (and T and L of course) have been with Respect for Infinite Diversity, but there is a decided lack of drama to the idea of positive support for all people). We’re trying to get all those who would be interested in actively creating and volunteering within the group to join and offer their ideas as to what they would like to see in an organization. It’s my opinion that such an organization should be a mixture of parents and individuals on the spectrum, that it actually help people in local communities.

There is a place for political activism, there is a place for scientific evidence, but there is also, just as important, for actually helping people in need, for providing support structures for all members of the autism community so that they are not isolated.

We have a long way to go, and while I think some divisions are absolutely unavoidable and necessary, my thought is that if one is interested in acceptance, appreciation, and accommodation, and willing to work to make those things a reality, then the rest will work itself out in the wash.

–comment I left at The New Republic.

*name a temporary one, permanent name to be decided by membership*

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9 Comments
  1. April 4, 2010 4:54 pm

    >I have to agree with the commenter over there – "everyone being heard" and "Facebook" is a bit of an oxymoron.

  2. April 4, 2010 6:25 pm

    >I thought ASAN does have members that are on the other end of the spectrum?

  3. April 4, 2010 7:29 pm

    >I hadn't looked lately over there, so I haven't seen that comment yet, jypsy. You know, I understand that everyone's not on facebook. I do. And I understand that people are busy with their lives and have their own particular interests to pursue, and that's great. Not everyone wants to get involved in something; not everyone wants to volunteer. That's fine. Kathleen and I set up Respect for Infinite Diversity in December; we created a forum, we tried to enter some resources for every state. We asked our friends and folks on different facebook groups to add information on resources in their area so people looking for help would have an easier time. We've got a whopping 15 members and by and large Kathleen and I are the only ones who've entered information. Again, that's fine. I'm okay with that. I get that drama and divisiveness draws more people in. Making a positive difference and trying to actually help people isn't nearly as interesting. And I know you would get that; you and your son do good work that doesn't get the attention it deserves.We're doing the best we can and we're trying. If putting a group on facebook gets us more folks who can hear about it and find the group, then you can't blame us for trying. I mean, we get less than a dozen people who look at the Respect blog. So, it's obviously not the way to get attention. And we're certainly not trying to run the show; the Autism Acceptance group is working group to try and bring together people who are interested in starting an organization that will give individuals with autism (from the huge and wonderful diversity that there is) and parents with like-minded goals the chance to connect, to discuss and to create a democratically arranged organization that is led by the group, that works on goals the group agrees on, that works to effect real change and help in local communities.You don't want to do it on facebook, you think there's another way to reach large numbers of people with similar goals, I am all ears.

  4. April 4, 2010 9:28 pm

    >Nightstorm,I have no idea. I think the main concern is that there are none on the board.

  5. April 4, 2010 10:52 pm

    >Yes, it is true…although facebook feels big-it isn't really in the grand scope of things..But what can one do..yes we work in our communities..do what we can..but it does seem that if there is no drama involved-people aren't interested. Sure people will write blog posts-when they feel a wrong has occured..And that is wonderful..What I don't understand is this..Over and over I have heard people complain because there is no help..or no information..or that the amount of information is so vast they don't know where to start. We thought that establishing RFID would be a step in the right direction..a step towards getting all sorts of information together in one place..Both Kim and myself are not interested in running the show-or being top dog in the autism community. We are both commited to trying to make the world a better place..to working towards acceptance, inclusion, awareness..for everyone. But I agree with Kim…unless there is drama..no one seems to be interested. So yes, please share your ideas..I know that I can speak for Kim in saying-we really want to do this..:)

  6. April 4, 2010 11:30 pm

    >I am wondering if it would make more sense to have the Facebook group changed to a Page for RFID and set it up to automatically import RFID blog entries. You could also set up a Twitter account that would post a link to new blog entries automatically, and then post to the Twitter account about updates to the RFID web site.I haven't been to the RFID discussion board, and I haven't read the RFID blog in-depth yet, but I would be interested in helping however I can with the goals you've described here. It sounds like something I can definitely stand behind. My e-mail address is on my blog. 🙂

  7. April 4, 2010 11:46 pm

    >@jannalou,We already have both a fanpage and an RFID group page; the fanpage automatically incorporates the blogposts. In a facebook conversation with several folks on the idea of creating something that would attempt to fill in the gaps of AS and ASAN, we began the discussion at the RFID group page, but decided that since the new organization would hopefully be something begun from a consensus of many individuals and set up as a non-profit, that any name should be decided by the group.Kathleen and I are personally happy to run RFID as a pure volunteer, no direct-money raising operation that is grass-roots. The forum is http://www.infinitediversity.proboards.comand the blog is http://www.respectforinfinitediversity.blogspot.com. Kathleen and I look forward to getting to know you. Any resource information you have, we would be beyond thrilled if you added to the forum. 🙂

  8. April 4, 2010 11:54 pm

    >I guess I should have just said ""everyone being heard" and "Facebook" is a bit of an oxymoron." I only agreed that "I think your idea is wonderful except for one thing: facebook." and my problem with Facebook is that it doesn't follow that it would see "everyone being heard". As far as "help" and "information" and "in one place", sure, now that you can access Facebook pages without having to have a Facebook account that part works. But "being heard" on Facebook means having a Facebook account. Jannalou makes good points here in the New Republic blog comments about how Facebook can support a more widely accessible site. I'm not even exactly sure what it is you want to do. I don't believe you need drama to get attention. What do you mean by "you and your son do good work that doesn't get the attention it deserves."? Perhaps you & I have a different definition of "attention"?But I'm sorry if I inferred or implied I had any better ideas. I just don't think Facebook is the platform where everyone can be heard. Maybe I just want to think I'm an "everyone" too….

  9. April 5, 2010 12:26 am

    >@jypsy, I was referring to the first responder training you help with.Yes, I'd read that comment by Jannalou, and it's certainly a good point. I made the point that we have at least three sites outside facebook that have gotten little attention.I suppose I'm inclined to think that drama is indeed necessary because it is when there is conflict that people get stoked up. When people have something to push back against, they can get worked up enough to act. For example, AS and its dramatizing autism as the enemy and something that must be valiantly fought against brings in the fundraising bucks, and they get away with funneling less than 40% of it into research and do little if anything to actually help people. Age of Autism whips people up into a feeding frenzy over big pharma and gov't conspiracies to destroy a generation of kids, and they're all spittle-flecked and mad over there, funneling money into their various anti-vax cure-autism groups.When I write a post that's harsh and critical of AoA or the anti-vaxxers, that gets read and may get comments, but if I write a primarily positive piece, it draws little to no comments and readership goes down. Countering (still a small blog, but growing) gets far more readers than RFID, Detritus, or other blogs Kathleen and I participate in, all blogs that I consider to contain our better work. But there's no drama or much less drama at those blogs.For what Kathleen and I would like to do, I recommend our RFID blog. It sets in place our personal goals. For the Autism Acceptance, of which we are only a part, well, it's a work in progress; we're still waiting for folks to chime in and say. I fear it will go nowhere, that talk is far easier than committing to action and that perhaps action by group consensus gets one spinning around and going nowhere in particular.Kathleen and I want to help those who are in need; folks who are in need of medications, in need of mentoring, in need of support, or in need of information. We'd like to help folks get those things, for them to know they aren't alone, and that who they are matters. We want accurate information about autism out there and parents to have the support they need so they don't go to the woo. We want adults and children on the spectrum to have the support they need. Sigh. We want, as I keep repeating like a broken record, acceptance, appreciation and accommodation, and to be fair, to add in Squid's fourth A (she proposed this on A Life Less Ordinary in the comments), action to make the first three a reality.

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