ICare4Autism – An Opportunity to Make a Difference

I attended the ICare4Autism conference in Jerusalem last week.  I wrote about this not long ago in the post Synchronicity, Jerusalem and Autism. As a quick recap Jerusalem was the place Richard and I had intended to go for our honeymoon.  Not six weeks before we were due to leave, the intifada broke out, forcing us to abandon our plans. That was thirteen years ago.  This past May I received a letter from the “State of Israel” inviting me to be their guest.

In addition Dr. Henry and Dr. Kamila Markram were presenting at the conference.  They are the neuroscientist team who came up with The Intense World Theory For Autism, the only theory to date that has validated my observations of my ten-year old daughter, Emma.  When I read they were going to be in Jerusalem this past winter I joked with Richard about how amazing it would be to meet them AND go to Jerusalem.  At the time we just laughed at the insanity of the idea and went on with our lives.  Then the invitation arrived.  I knew it meant I would need to write about the conference.  Writing about the conference was why I’d been invited.

Except I do not consider myself a “journalist.”  I am not an impartial, unbiased observer, prepared to provide an even-handed summation of my observations.  I am highly opinionated and exceptionally biased in my ever evolving perspective on autism.  I regard the motivations of most so-called autism advocacy organizations with suspicion and even outrage.  I am frequently hostile in my view of the self-appointed Autism experts, medical charlatans and other “professionals” who make a living off desperate parents, like myself.  If I had all the money I’ve spent on the various “cures,” biomedical interventions and dubious therapies we have employed over these past eight years, I wouldn’t have cared about an invitation providing me with airfare and hotel accommodations.

In less than a year, my perspective has radically changed.  Had I attended this conference last August my focus would have been on meeting as many researchers and doctors as time would allow.  I would have spent each break roaming through the many tables set up outside the conference rooms selling all manner of goods purported to help a child with Autism (and yes, that is how I would have described my daughter – a child with Autism) hoping for something that would cure my daughter with the same longing and desperation that had dragged me from one “specialist” to the next for all those years, not so very long ago.

But that was before.

That was before we began implementing Emma’s literacy program.  That was before Emma showed signs that something we tried could and would work.  That was before I read Henry and Kamila Markram’s Intense World Theory.  That was before I began reading the blogs of Autistic adults and as a result began communicating with a number of them (see yesterday’s post).   Suddenly, and it really was relatively quick,  I began to view my daughter through the eyes of someone seeking to understand rather than fix.  I began to see her actions, whether it was stimming or echolalia or self-injurious behavior – as her attempts to communicate rather than aberrant behaviors that needed to be quelled and eliminated.

Was ICare4Autism going to be different than any of the other organizations out there promoting interventions, therapies and the ever illusive and questionable promise of a cure?  The information I compiled prior to the conference did not look promising.  But, I kept reassuring myself, the Markrams would be there and if nothing else, I had set up an interview to speak with them.  Beyond that there seemed little to distinguish them from any of the other organizations using “autism” in their name.  Still I went to the opening dinner with an upbeat, hopeful attitude, eager for a better idea of the organizations intentions.  When the opening video played I consoled myself that at least the distraught parents filmed were not openly weeping and talking about their distress in front of their children.  By the way, just in case anyone misunderstands me, less than two years ago I could have been one of those sobbing parents and I would have wept in front of my daughter and spoken of her with the mistaken assumption that she couldn’t understand.  It would not have occurred to me that hearing her mother speak of a desire to cure her might have made her feel horrible, sad and depressed, things she wouldn’t be able to communicate to me, which would only further her sadness and feelings of isolation.  I get it.  Really I do.

The conference began with a Welcoming Ceremony with a speech from the founder and CEO, Joshua Weinstein, who called for communication and collaboration.  He spoke of plans to move their headquarters to Jerusalem, a city with a long history of misunderstanding and strife, making his call for communication and collaboration all the more significant. The Mayor of Jerusalem, Nir Barkat spoke of his pride in hosting the ICare4Autism conference and eagerness in it becoming a world center for Autism research.  Dr. Shekhar Saxena, director of Mental Health and Substance Abuse at the World Health Organization spoke briefly as did a number of others.  And then the Autistic Boys Choir got on the stage.  Seven teenagers began to sing, their voices rang loud and clear, their pitch was perfect, their enthusiasm and joy infectious and the audience began to weep.  I was right there with them, madly rummaging around for my kleenex, trying not to let out too much noise other than the odd sniffle.   I wept from sheer gratitude, because these teenage boys/men were like my daughter.  One young man in particular who clearly reveled in performing reminded me of Emma.  So yes, I wept from relief, from joy, from seeing Autism shown not as a tragedy, but as difference and of hope for what can only be described as the possibilities, not just for our children, but for us as a society when we hand the microphone over to those we say we care about and want to help – Autistics.

Over the course of the next day and a half I tried to meet with Joshua Weinstein, but for a variety of reasons, wasn’t able to.  Then finally in the afternoon of the last day of the conference, I saw Joshua Weinstein and mustered up the courage to approach him.  I spoke to him about why the Autism = Tragedy model needed to be discarded, that while it may get people to write checks it was an unbalanced view, completely disregarding the feelings of Autistics (our children) who are being sent the message that they make their parents and families desperately unhappy, the very people who are supposedly trying to help them.  Josh was not only kind and receptive, but later thanked me for coming over to him.   He assured me that he really was interested in communicating with Autistics and would take me up on my offer to introduce him to a number of people I know, both verbal and nonverbal, and am in contact with.

Josh invited me to be on the advisory board, which I’ve agreed to.  He is working with a number of people at the UN, as well as WHO (World Health Organization) and asked that I attend the UN meeting.  He has, since we spoke at the conference called and we are in email contact demonstrating his sincere desire to follow through with his promises and words.  Am I surprised?  Yes.  I am.  But more than that I am hopeful.  Hopeful that ICare4Autism will actually include the very people they say they care about by putting them on their advisory board and by listening to them as they develop and attempt to fulfill their mission in becoming a world-wide Autism organization that does more than pay lip service to those who are Autistic.

“Caring about autism – what we know of it and how we put it in our narratives – is something from which all manner of people can and must benefit.”  Representing Autism Culture, Narrative, Fascination by Stuart Murray

Autistic Boys Choir

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17 responses to “ICare4Autism – An Opportunity to Make a Difference

  1. What can I say? What a wonderful recap of a roller-coaster ride. You are making a difference every day in letting people know that the voices of autistics are the most important ones that parents of autistics can listen to!

    • Thank you for taking care of everything so that I could mull this over and write about the conference. Thank you for your suggestions, your edits, and rewrites, thank you for always cheering me on. Mwah!

  2. What I would like to see is writings by Autistics (with their permission of course) included in the Huffington Post, and Autistics in person at global meetings/UN/WHO/Jerusalem/icare4autism. Wouldn’t that be a welcome breakthrough? In fact all persons who are labeled, and therefore shoved into categories without their permission or input, have a right to be heard and read. The autism movement could be another foot in the door against centuries of discrimination against “the other”, the “not-us”, the “them”.

    Love your posts,
    The Biased Against Labels Granma

  3. This post is worthy of many WOWS! The trip, the conference, your go-get-em-ness and your new position as a result. I am glad that I “know” you. You are a WOW! 🙂

    • Thank you Charlotte. Just left a far too lengthy comment to the New Mom on your blog. Thank you for giving all of us a chance to help another mom. Each of us is doing what we can to change things, one small step at a time!

  4. Thank you for this Ariane! Spectacular!

  5. You know, it occured to me the other day that if my daughter had been born to parents like you and your husband, she might’ve actually had a chance in this world. You have more devotion to Emma in your little finger on a bad day than I think I’ve had to Risa her entire life. 😦

    I’m only now beginning to figure out the damage I’ve done to her over the years. We’ve only done the bare minimum for her because we can’t *afford* to do anything that Medicaid and SSi won’t cover. Looking back now, there are so many things we might’ve been able to try that could’ve made a difference.

    That doesn’t even mention the resentment I’m sure she’s felt her entire life, the talking and lamenting about her right in front of her. The assuming she doesn’t understand anything we’re saying. The getting angry about her tantrums instead of trying to figure out what’s wrong.

    The not letting her just be *herself*, without trying to *fix* her.

    This isn’t on my husband, just on me. From nearly day one he completely accepted Risa for exactly who she was, whatever that might one day mean. All these years later, it’s obvious why he’s her favorite.

    I’ve been such a bad mom, Ariane. While my kids have been growing up, I’ve been so completely absorbed in my own issues that I’ve scarcely paid attention to them, it seems. Especially with Risa. I’ve left her to her own devices because she seems happier that way, when in reality it was just easier to make sure her basic needs were met, and let everyone else do the therapy. Which she has never had enough of.

    You say you regret some of the things you’ve done with Emma, but at least you had the opportunity and means at your disposal to try things outside the box. And how do you know they *didn’t* help her? That maybe things were sinking in when you didn’t even realize it?

    Emma is leaps and bounds away from where I think Risa will ever be, and lately, it’s been especially painful to read about it. That’s why I haven’t been around much.

    Sorry to be such a downer. Maybe I need an impartial person to talk to? This has got me very upset lately.

    • Angie, I’m just grateful you are talking about some of this now and yes, we could all stand to talk about things like this to someone who is completely impartial, I know I have had to. But I’d like to point out to you, as someone who really had perfected the art of beating myself up, recognizing this stuff, sitting with it and trying not to repeat it, as best we can is the best we can do. I am sending you love.

  6. Thank you. I really need it right now! I just feel like such a failure.

  7. (Emma's therapist)

    Incredible post and fantastic news about your new position on the advisory board! Very smart move on their part to have you join their team. You’re easily the MVP of our team! Seven years and counting of watching you do what’s likely equivalent to 3 or 4 phd’s in autism. Can’t thank you enough for continuing to shape how I view autism and how to best assist autistics. Thanks, congrats, and YGG!

  8. Pingback: Posting Under Pressure | Emma's Hope Book

  9. Ariane,
    You are amazing! Mahalo for all you do to change the world’s view of autism!

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