Wednesday, June 13, 2007

Talking amongst ourselves

I find this curious and disconcerting. Here is a group of people who are willing to talk for days about nothing but the true meaning of advocacy and how the concept of Neurodiversity fits with autistic advocacy and rights.
Yet, not a single person responds to my sincere request for input on how these ideas might best be presented to a group of uninitiated persons talking about autism and services.
Don't get me wrong, I'm more than willing to present what I think needs to be said, including the disclaimer, of course, that this is just one individual's viewpoint.
I do find it unnerving, though, that a group (and I don't mean organization, but people who talk to each other regularly) so motivated to debate these topics internally does not wish to address what is going to be said directly to those who have never heard of Neurodiversity, Autism Hub or any such thing.
Just an observation...


  1. I didn't know how to answer what you were asking.

  2. Me neither, I am sorry.

    Sometimes it seems such a huge thing to have to explain to people who may have very different worldviews in an easy to digest format.

    I hope some people come up with helpful comments.

  3. Sometimes it's easier to argue semantics and concepts than actually figure out things like the answer to your question. I don't think I have any answers, either. I have ideas, and those ideas may or may not be useful, but I would need to know more about what you're asking and why before I could even begin to answer.

  4. I doubt if anything I had to say would matter being as I am persona non grata these days.

    However I consider neurodiversity to be an offshoot of the disability rights movement, which itself is an offshoot of the civil rights movement, indeed the phrase "nothing about without us" came to the UK disability movement via South Africa thanks to Vic Finkelstein (a white disabled anti apartheid campaigner). Oh yes I can disagree with Vic too, but the disability movement seems to have grown up beyond name calling.

  5. Many thanks to all three of the above. It helps to know that the problem is that I haven't been clear (happens all the time, believe it or not!).

    I attended this conference (for parents and professionals mainly, but a handful of autistic people were there) last year. They had a Provider Expo with tables of information, mostly on therapies, organizations like the local ASA branch, biomed junk, etc.

    This year I asked for a table to recruit university students with AS for a research project I'm doing. I asked the person in charge if I might also distribute some information on Neurodiversity, explaining that I wanted to introduce the idea of autistic civil rights and some concerns autistic adults have about being excluded from the general discussions going on among both professionals and the media.

    She agreed on the condition that I not directly challenge specific organizations in my handout, and that the information not be overly confrontational. (She declined to have any of my own posters, for example, but approved a handout of general statements on the concepts of neurodiversity and autistic rights).

    My question is: Considering the disagreements about what exactly comprises "neurodiversity", should I remove the word itself? Or rewrite the handout to be more inclusive? Or completely reframe it as an Autism Advocacy pamphlet (which might be more accurate, but would neccesitate having the coordinator approve it again)?

    Maybe all I need to do is be very clear that this is my own interpretation.

    However, I wanted to see if anyone had something in particular he or she thinks is most important to say. I have other projects I am considering out there in the physical world, and I don't want to misrepresent in any way these concepts which are of vital importance.

  6. Larry,
    Thank you. I appreciate your statement very much, and am happy you have chosen to participate in the discussion. Persona non grata? I think not!

  7. I wanted to answer that I thought, since the conference you will be attending will likely have a large "parent" population, that offering them a link to the Autism Parent's Forum would be very appropriate, and would bear fruit in that acceptance and understanding of autism is promoted heavily there.
    Unfortunately, whether right or wrong, I chose not to comment until and unless some autstic people chose to do so first. Based on my interpretation of recent discussions on the Hub, I was passively ceding the role of leadership or agenda-setting, since I am NT.
    But there it is - I think it would be great if you included in your information the address for the Autism Parents Forum.
    Thanks, Bev.

  8. Thank you, Steve
    I will check out the parent's forum today. I've not read it myself, but am interested to see what's being said there.

  9. I would feel very uncomfortable in that situation, and given the circumstances it is better to go for autism advocacy as there has been enough misunderstanding about neurodiversity already.

    If you are going for neurodiversity it is important to emphasise that autistic people are not the only ones to face discrimination, lack of access to appropriate services, educational rejection and are not the only ones to be preyed upon by every quack and snake oil salesman out there.

    You are lucky to be given a table, a certain local organisation would not give me that privelege, nor do they advertise my local group in there newsletter.

  10. Like Steve, I was consciously staying out, as a non-autistic. But you could do worse than also point people towards Christschool's video of 16 ways to be allies:


  11. I guess when I've given talks to parents, I've never given talks about neurodiversity or about any specific concept. I more give talks with whatever principles I have embedded in the talk.

    For instance, I've given talks to parents before on how to encourage self-advocacy skills in their children, regardless of level of communication competency etc. I incorporate a whole lot of ideas that may have words like "neurodiversity" into the talks, but I don't make them the focus.

  12. Bev,

    I assumed that you would know your audience: your locale, the demographic of the attendees, etc and that whatever you did would be helpful. Use your best judgement. I'm not sure if people who aren't there can really give that much insight to what you need to have on hand.

  13. Laurentius Rex, Ballastexistenz, Club 166, Camille,

    Thank you all for taking the time to comment here. This is very helpful to me and I appreciate your viewpoints. I am feeling much more grounded. Sometimes I get this vague, borderless feeling and just want some feedback to make sure I haven't lost my mind and imagined something into existence.

    I've learned from this experience to try to be more direct when asking for help. I will, most likely, need to learn this lesson again (and again).

    Stay tuned for the outcome of this endeavor sometime next week. Hopefully, I will not be pummeled by the curebies and biomed fans in attendance.

  14. I've said this before, on other blogs and forums: I constantly wonder why so many parents of children with autism spectrum disorders -- especially Asperger's Syndrome -- seem oblivious to the fact that it's so commonly hereditary.

    Is it a form of denial? Ignorance? Or are they affected themselves and just can't recognise it, despite understanding it? (This is an aspect of ASx that I struggle with continually. I constantly fail to recognise situations that I understand thoroughly -- once it's pointed out to me!)

    Ergo, is this thread a case in point? Are people unable to articulate answers because it's too close to the forest for them to see the trees?


  15. I know for sure there's a strong argument that can be made in favor of neurodiversity in the area of innovation and problem-solving in the workplace. Even people deemed to be "suffering" from some "mental conditions" can add valuable perspectives to situations or view premises from different angles that add much over the ways in which things are typically viewed.


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