Tag Archives: AutCom

AutCom 2012 Conference – The Best Kept Secret

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.

Ari Ne’eman

Jennifer Paige Seybert

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.”

Jordan Ackerson

Tracy Thresher

Larry Bissonnette

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.

Expectations, Acceptance And The AutCom Conference

I am in the midst of preparing the presentation I plan to give at the AutCom conference Saturday, October 6th.  There will be lots of visuals and (hopefully) some humor. I intend to talk about our  journey from diagnosis to terror, despair, anger, determination, discovery, acceptance and HOPE!  I will keep it personal and hope that our story might resonate for other parents, while also explaining why and how the words and voices of Autistic people have so completely changed our lives.  (I use the word ‘our’, because it is not just my life that has changed, but Richard’s and by extension both our children’s too.)  I hope to illustrate the ripple effect of our actions, all of our actions and how important it is (to me) to do everything I can to change the way Autism is perceived.

I have found that in talks such as the one I am about to give, one walks a fine line between trying to share one’s personal experience and ‘lecturing’ or being seen as dictating to others how they should or shouldn’t behave.  I don’t know that I’ve always gotten that balance right, in fact, as I write this, I know I haven’t.  But there are a couple of points I know are universally important.  Things I can do and try to do – be honest and hold myself responsible for my actions.   While also being hyper aware of what Emma would say were she in the audience.  Am I saying anything that would wound?  Am I saying anything that might make her feel badly about herself?  If she were there, would she object?

On this blog I have shared all kinds of things about my past, my personal struggles, things that happened long before I ever had children because it’s important to me that people reading this blog understand, my “issues” are not caused by my husband or either of my children.  My issues are what cause me to react the way I do.  It is this baggage, some of which I’ve unpacked, some of which I continue to struggle with, that cause me to trip up and behave the way I do.  Neither my husband nor my children CAUSE me to lose my temper, feel sad, fearful, depressed or impatient.   I felt all those things long before I was fortunate enough to have a family of my own.

When I am feeling disgruntled about my life it is not because of my husband or children or anyone’s specific neurology, it is because I have expectations that have gone unmet.  Until I am able to fully embrace and accept myself, my life and everyone in it fully, I will grapple with feelings of discontentment and despair.  My level of annoyance and dissatisfaction are in direct proportion to my unmet expectations.  This is my life’s work.  This is what I need to be vigilant about.

Given all of this, it is particularly fitting that tonight Richard and I are going to a meditation workshop with our two favorite Buddhist teachers, Ezra Bayda and Elizabeth Hamilton at the Open Center.  Their lecture is appropriately entitled –  Freedom From Fear: A Zen Perspective.

Nic does the NYTimes crossword – April, 2002

Emma ‘reads’ the NYTimes – 2003

Autism, AutCom, Huffington Post, Podcasts, Sprinkler Parks and Tea Parties

It was a jam-packed weekend.  Sunday Nic and Emma played together in one of the many sprinkler parks dotting this amazing city we are fortunate enough to call home.  (Not the sprinkler park.  Home, as in New York city… okay, you know what?  Never mind.  Just look at the adorable photograph.)

Yesterday, Richard and I spent the entire day at the Upublish BEA conference, which was pretty amazing.  Richard’s any-day-now-soon-to-be-listed-on-Amazon-five-star-Clarion-reviewed-amazing-genre-straddling-thriller, The Book Of Paul, will be available for public consumption soon and so this was a particularly relevant conference for him, and me as I am working on my book about Autism, our family and Emma.  I know – do we really need another book about autism?  I’m thinking we do, particularly after reading some of the comments on my most recent piece on Huffington Post, The Depiction of Autism and Why it Matters.
Meanwhile the wonderfully fun and up-for -anything Jackie, adored by both our children, took the kids to various parks and swimming.  She then invited Emma to a tea party celebrating her arrival to New York five years ago.  (This is the kind of thing we New Yorkers do, throw parties to celebrate our moving to this wonderful city of ours.)
Emma, thrilled with any event that affords her the opportunity to wear one of her pretty dresses, was extremely pleased.
Meanwhile halfway through the Upublish conference, I received an email inviting me to speak at the upcoming AutCom conference this October, which will be held in Maryland this year.  I am honored and look forward to it!
Friday afternoon my piece The Depiction of Autism and Why it Matters was published on the Huffington Post.  By Sunday it was getting some attention on Facebook and so they bumped it up on HuffPo, giving it a more prominent place on their Health News home page.  A large number of Autists commented, for which I am grateful, both for their perspective and support, but also because, as one of my favorite people, Ibby said, “You’ve found your daughter’s people.”
Finally, the interview I gave on Friday (my first podcast!) with Bryn Johnson of WebTalkRadio – Business Cafe – When a Passion Leads to a Business with guest Ariane Zurcher  is now available for your listening pleasure.  The first half is about business and being an entrepreneur and the second is almost exclusively about this blog and autism.