The Autcom conference was a fleeting glimpse into paradise. A tiny taste of how the world could be were we accepting of each other, treated all people as equals and with respect, without prejudice, without assumptions, without bias. Autcom was a window into how the world could be, but isn’t. Not yet. Words do not do this conference justice. How could they? How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea. A vision. How do you describe that?
Accommodation – it’s a word we hear, but what does it really mean? At the Autcom conference it meant waving hands at the end of a presentation instead of clapping, lowered lights, snacks that included gluten-free and casein free items and non dairy alternatives. Accommodation meant no one stared disapprovingly at anyone who stimmed or made noise or got up to leave in the middle of a talk. Accommodation meant people were polite and moved chairs that might be blocking someone’s ability to come or go. It meant using a microphone or repeating a question for those who weren’t able to hear the first time. It meant being respectful and considerate when someone came up to peer at your name tag and it meant understanding that when that person gently touched your hand after a presentation it was their way of thanking you and I defy anyone to not see the beauty and love in that. Accommodation meant slowing down while someone typed their answer or question or thought. It turns out accommodation means being a thoughtful, considerate human being who is respectful of others. How is it this isn’t done automatically, as a matter of course. How is it that we as a society have drifted so far from this very basic and easy way of being in the world?
The single biggest issue I had with this wonderful conference was that there were too many terrific things going on at once and it was impossible to see and hear everyone and everything. To give you an example of this – on the first day of the conference after Ari Ne’eman’s welcome and an opening keynote address by Jennifer Paige Seybert, was Savannah Nicole Logsdon-Breakstone’s presentation – Loud Hands Project’s Neurodiversity 101. At the same time, Larry Bissonnette, Pascal Cheng, Harvey Lavoy and Tracy Thresher were doing a presentation on Supported Typing, which I really needed to go to in order to assess whether this might be something we could use to help Em communicate more effectively, but next door to them was Nick Pentzell, Hope Block, Jacob Pratt and Autumn Dae Miller presenting “Rated “R”: That Oh-So-Difficult Topic”. I cannot tell you how much I wanted to hear them too and later heard from others that it was a not to be missed presentation, sadly though, I missed it. Human Development Journey was presented by Cecilia Breinbauer about using DIR, which was the method Richard and I were trained in by the late Stanley Greenspan, after abandoning ABA.
That evening after dinner and a wonderful performance by Jordon Ackerson who reminded me of Emma because of his beautiful voice, we watched Wretches and Jabberers, with a Q&A with Larry and Tracy. This was my third time watching this documentary, which I posted about last month ‘here‘. I asked them about self-injurious behaviors, something both engage in during the film. I asked for their opinion about the commonly held belief by many that SIBs should be thwarted and how parents and caregivers are often unsure how to deal with this. Tracy typed, “That was years of frustration with no way to reliably express myself working its way out through my behavior the problem was lack of communication which pissed me off.” Larry typed, “I lived in an institution so I was locked in arms of restraint its legal but immoral and only represses anger nothing looks more kind than softly spoken words and lit up smiles.”
Read that again. “… nothing looks more kind than softly spoken words and lit up smiles.” The presentations were terrific, but it was what is possible that this conference represented, which affected me most profoundly. The AutCom conference was an example all organizations, who say they are interested in Autism and helping those who are Autistic, should follow. Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more. At my presentation there were more Autistic people than not, for which I was truly honored by. The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness. Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together. Accommodation and inclusion means we ALL benefit.
“It turns out accommodation means being a thoughtful, considerate human being who is respectful of others”
yes. (I wanted to write “well duh” but that doesn’t quite fit it, as “duh” is rude, and I don’t want to convey that. I want to convey the fact that it’s just so very very true.) Thank you 🙂
Thanks E. Yeah, it was very much a *duh* thing, I know exactly what you mean! To be there, to witness it, to see how easy and fluid it can be, made me all too aware of how far society has drifted. Perhaps though, society can be shown that this other way is possible. Perhaps people can begin to catch glimpses of this and will see how wonderful it is. Perhaps more and more people will choose this because it feels to wonderful to do so!
When you described the warm loving accommodating mood of the autcom conference I thought “what a contrast to the 2 supposedly NT men trying to strangle each other and then shouting f–words and worse at one another. Neurotypical? Then I want out! I want to be with you and all the autistics who obviously know more, much more about sensitivity, emotion, empathy, compassion, and accommodation. Labels don’t describe inner feelings and thoughts, frustrations and all that goes together with autism.
And the sad thing is that those 2 men who were trying to kill each other are never going to go to anger management, while autistics who have to suffer at the hands of people who are labeled NT, try to do something about being heard, understood, treated with compassion, and loved.
What sort of world do we really live in?
And why aren’t there more NTs around who are like you, darling Daughter?
Dearest Mom, what a lovely thing to write. Thank you. Sending you and the pups love.
If there were more people around like your daughter, so many of the world’s problems would be solved immediately. You must have done something right!
Ariane!! I will be tweeting and posting this one … endlessly…
This sounds so much like H’s experience at the Arizona TASH conference in June, where he was invited to attend (as a self-advocate).
“H was so accepted and appreciated for who he was in the moment! This is what I promote when I work with educators and parents – but what a wonderful thing to feel and experience when it is my child on the receiving end.” Here is the link for those who might be interested: http://30daysofautism.wordpress.com/2012/06/14/the-amazing-arizona-tash-adventure-a-roadtrip-with-h-part-2/
Thank you… as always for your perspective and your advocacy!
Leah, thank you for leaving the link to your wonderful piece and to your wonderful blog. For all who may be unfamiliar with Leah’s blog, 30 Days of Autism is terrific, as is Leah, who I’m also really honored to call my friend!
Sounds like an amazing weekend, and an amazing place to be. I wish I could’ve been there. Did you have someone take a video of your presentation? I would SO love to see it if you did!
It was wonderful Angie and I wish you could have been there too. My presentation was a bit delayed because we ran into technical difficulties and at one point thought my power point wasn’t going to work at all, so I was going to have to ramble on without any visuals! But luckily we did manage to get it all working, but no. No one videoed it. I have to tweak the power point to post it on the Autcom website as it is just slides without much text, so it won’t really give people any idea of what I was saying. Not sure when I’ll have time to do that…
Ariane – As a member of the AutCom Board, I am so glad that you have discovered the AutCom experience and very much appreciate your comments. I will share them with other Board members but would also like to share them with all our members by reprinting them in our newsletter. May I have your permission to do that? You took some wonderful photos. Would you email them to me for our newsletter also?
Oh Sandi it would be my pleasure. I’m so pleased you liked this post. Sadly most of the photographs I took were out of focus! I didn’t have my glasses on and thought they were all fine, argggg! Shall I send photos to the email you’ve used to leave this comment or do you prefer I send to another?
Ariane – please send them to both this email and to firstname.lastname@example.org
My husband puts the newsletter together.
We had a very busy fall but are finally getting to the newsletter.
Thank you and Happy New Year!
Yeah but everyone can see me and my handsome sons, so who needs words really?
Well exactly Ib and since there are TWO slides of you, it could be argued that I just post those two with the words: ‘nuf said.
Lucky hubby guy not only get’s to read all the wonderful stuff above, but got the daily/nightly news each day of the conference, PLUS, the extended report that keeps getting extended every time she thinks of another awesome thing that happened. Jealous? Discuss.
Argh. Plus you get to be a Real Writer in a Leather Jacket while you are at it.
Ahh… Ib that’s okay because you’ve got those awesome John Lennon shades..
Most excellent! I have simply read and reread your post numerous times, just soaking in your experience, your words about it and all the while imagining such a world where we treated each other with respect, concern and dignity. As I so often sign off…
p.s. (not thinking too well today) What was the focus of your presentation?
I spoke of how autism is depicted from an advertising angle, how it’s been “marketed” and how that leads many to feel tremendous fear, which in turn makes it much easier to sell parents on various dubious treatments for their children. I talked about my journey through all of this, from trying desperately to save my child from what I viewed was going to be the inevitable outcome of her autism once Richard and I died – an institution – to finding hope in the blogs written by Autistics. I talked about my friendship with Ibby and how powerful that has been and since most of the people listening to my presentation were autistic I encouraged them to keep speaking out. I tried to convey how important their voices are and how it was their voices that changed me and my families lives and how grateful I was to them. (I think that’s a pretty good summary of my talk!)
“Another step for mankind”. Well done!
Thank you Ann! It was indeed!
I was there too and the words that kept running through my mind over and over were these: respect and strength. I have never been in rooms where people—all people—were treated with such tremendous respect. Then I thought about how strong all of these people are, how many have been through really terrible things, yet they stand in front of groups of people to tell them to keep walking with heads high. Phenomenal.
I must have seen you! I would have said hello, had I known. What a wonderful event!!
I was in your last panel. I’m not very good at approaching people I don’t know, but I was waving hi in my head. 🙂
And by “in,” I mean “at.”
Oh no! I wish I’d known. There were way too many of us on that panel, it was too bad, I actually tried to bow out as I thought it would be nice if Jordan and Laura and some of the other parents had had more time to speak. Next time we will say a proper hello to one another! The name tags were helpful but now I have the images of people’s name tags in my head, but I can’t pair them with the person’s face, so I’m still at a loss as to who was who. It’s one of my many failings, cannot attach names to faces easily!
Wow… that just sounds… so awesome. I wish I could’ve been there. I wish we had something so affirming here in Oz. (we’re working on it, but yeah…)
I wish you could have too. It was truly transformative!
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Hey AutCom friends – so glad to meet several of you who I’d only “met” online. MCIE was proud to be a sponsor, and enjoyed every minute!
“How do you describe a room full of people who are connected not through race, nationality, religion, political views or neurology, but instead are connected by an idea. A vision… Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together.”
This is the world I dream of! The one I want to help grow in the seedbeds of faith communities, and encourage others to grow elsewhere… Thank you for sharing and letting me live vicariously until next year!
It really was wonderful to be a part of, it gives me hope that this microcosm of what is possible might be replicated elsewhere!
I am sorry I missed your presentation, but happy I met you!
Aww.. Amy, so happy to have met in person! It was wonderful having some time to talk!
Sounds really powerful and peaceful and reassuring. I wonder, can you point me to a prior post, if you’ve written one, about why you think ABA is a problematic approach? For our Lucy, so far, it seems like a good approach but I’m quite aware that others have been challenged by it. I’m just not quite sure I understand why. Perhaps there’s a difference between “east-coast” and “west-coast” ABA…I’m in Oregon, and everything seems gentler and more respectful here.
Whoops, I meant to add a smiley face at the end of that — I’m mostly kidding about “kinder and gentler” Portland, although maybe not 100%. Anyway, just seeking to understand; I don’t mean to be challenging anyone’s decisions.
Such a hot button topic and although I certainly haven’t made my views regarding ABA secretive, I also haven’t written a post devoted to it. But I know some people who have found some good pieces about it. Here is the best link I’ve found to date regarding ABA, it’s from Michelle Dawson, who is Autistic – http://www.sentex.net/~nexus23/naa_aba.html The only piece I’ve posted specifically targeting ABA as something to avoid is the interview I did with the Markrams – Kamila and Henry both neuroscientists – and was published on the Huffington Post – http://www.huffingtonpost.com/ariane-zurcher/intense-world-theory-for-autism_b_1897461.html
and this is the classic piece by Morton Ann Gernsbacher on whether ABA is
‘scientifically proven’ http://psych.wisc.edu/lang/autism-research.html
I’m told Oregon is much better about regulating what is acceptable even from an ABA viewpoint, but I still find the entire pavlovian approach when applied to any human being extremely problematic. But I know people who swear it’s been enormously helpful. We had an absolutely horrific experience with it and Emma regressed. I also think ABA works from a deficit approach, in other words the child is seen as deficient and work is then done to ‘correct’ that.
Hope this helps! 🙂
Thanks for the links; I appreciate the different views and information! I think the combination of Lucy’s particular skills and challenges, plus perhaps a unique “ABAish-but-not-really-ABA” approach at her current school, are contributing to make it the right place for her now. Basically it seems to me simply like the teachers/therapists care more and are more capable of dealing with challenging behaviors (tantrums/meltdowns in Lucy’s case) than typical teachers have been. I haven’t witnessed or read in their literature any repetition/rote learning, and certainly no adverse punishment responses. I very much appreciate knowing what to be looking for, though, because if I ever did see any of the downsides your links (or your personal experience) mentioned, I would react immediately. Lucy needs challenge and support and love and appreciation…I’m happy to feel like she’s getting it.
Thanks wonderful to hear Melissa and it sounds as though you are on top of it. It took me far to long to see that so many methodologies were working through the lens of deficiencies, while also NOT presuming competence. This is a deadly combo for anyone regardless of neurology. As long as there is a presumption of competence and not the opposite, you will be well ahead.
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