~Rumi

All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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03 June 2009

You Want Summa Dis!


[Disclaimer: I fully endorse autism-related support groups that are autistic-friendly, empowering, positive, and proactive. I would like to both acknowledge and thank all autistic people, clinicians, doctors, parents, therapists and other professionals who lead these groups in inclusive respectful ways.]

Imagine my surprise when I received the email response below from a potential attendee/supporter of the Autistic Self Advocacy Network - Portland chapter. The response below is a reaction to the brief email I sent to this person who requested further information about our group. I advised this person to bring something of interest to share with our group, as we like to encourage the passionate interests of autistic people:

Bring something to share with the group?!!! That last part just ruined the whole idea of attending for me; it makes it sound like a daycare for the awkward! What is it like socially awkward show & tell or something? I think I might just stick with Wrong Planet if that's the case...

At first, I was horrified, but then I thought better and decided to turn this email into a blog post about the burning opposition and inner seething many autistic adults feel toward groups led by *well-meaning* clinicians and therapists.

Just because a person is autistic and may have specific needs, does not mean he or she will jump at the chance to join a patronizing group led by a clinician or therapist who may not be sensitive to the real needs of autistic people. Many autistics are on the lookout for groups that lay the foundation for empowerment, respect, and self-advocacy. Pessimistic support groups focusing on cures, pity, and what's wrong with autistic styles of being, are void of real-life application for the self-determined autistic.

Why should the self-determined autistic have to go about life feeling as if he or she is a detriment to society, or that they should never have been born? Who decided that autistic individuals should reach adulthood only to continue carrying a torch blazing with hopelessness and regret? How does this foster self-esteem? Is prolonged pity proactive or pathetic?

It often radically stunts the development of autistics to grow up in an environment where there is a constant sense of sorrow and tragedy. How is the autistic individual supposed to reach a functional sense of autonomy while learning, or even attempting, to survive in such a counterproductive atmosphere?

The constant barrage of negativity surrounding autism--including twisted media hype, fear, and panic--needs to stop. As it stands, there is no cure for autism. That noted, valuable resources should be directed toward quality of life oriented studies, as well as services intended to enable and integrate autistic people.

This brings me to the importance of organizations such as:
I would like to mention a new autistic-run magazine created by Sharisa Joy Kochmeister titled The Voices and Choices of Autism, set to debut later on this month. This is a brilliant example of what autistic people are capable of accomplishing if they are supported and taken seriously, as well as encouraged to defy medical and pity-based odds and barriers.

Amazing things happen when autistic people refuse incorrect assumptions and myths and instead persevere by setting goals related to their passionate interests.

*If you're interested in a free subscription to The Voices and Choices of Autism then email Sharisa (who gave me permission to list her email address here) at:

sharisajoy@yahoo.com

.............................................................

So here's the second email response I received from the above temporarily-disgruntled-autistic who showed interest in the Portland ASAN chapter--after I further explained our group mission:

Ah, then I apologize for my previous rude outburst. From what it looks like, 99.95% of these groups are parent support groups, with maybe only a minor populous of actual autistics, kind of like Autism Speaks (zing?), so my initial impression was patronization. Now with a clear head, I see I was way off.

There's nothing like a successful outcome for the autistic alchemist who sets out to transmute opposition into understanding.

2 comments:

  1. I'm glad your correspondent figured out ASAN wasn't like that --- sounds like he or she's had some disappointing experiences with autism support groups.

    I do think it could be awesome, educational and helpful for everybody if adult autistics and parents of autistic children could talk about the challenges autistic people face at *EVERY* stage of life, but having just one or two token autistics in what's primarily a parents' group is not the way to do it. That's just a recipe for exhausting and alienating the few autistics who do join such groups.

    (I think, ideally, an adult autistic should lead one of these mixed groups, to combat the tendency for group discussions of autism to ignore us. And, of course, having our own spaces is valuable, too; I just think there's also a need for open communication between us and parents of autistic children.)

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  2. I just added a disclaimer at the top of this blog. I'm sorry if I offended any of you *fabulous* understanding and supportive parents, doctors, therapists, and other such people who work hard to ensure that autistic people are enabled, respected, and empowered.

    @ Lindsay: You made a very good point by addressing the need to talk about and support the challenges autistic people may face during ALL stages of life.

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