The Autism Acceptance Project

Backgrounder

The Autism Acceptance Project
Tapping into Human Potential and Dignity

§ The Autism Acceptance Project: Tapping into Human Potential and Dignity is a not-for-profit organization working toward achieving acceptance and tolerance of autism in society.

§ The Autism Acceptance Project was founded by Estée Klar-Wolfond, writer and curator. Estée’s young son Adam was diagnosed with autism at 20 months of age.

§ Through a series of annual events and exhibitions that support positive views about autism, the organization seeks to support parents and people with autism by advocating for educational support and a variety of services that enable identity, dignity and quality of life for both adults and children who are autistic.

§ Celebrating its second year, The Joy of Autism: Redefining Ability and Quality of Life is a gallery exhibition of international artists with autism at the Lonsdale Gallery from October 5 until November 5, 2006 and a lecture series by renowned academics, researchers and individuals with autism held on October 10th, 11th, 12th and 16th at the Al Greene Theatre at the Miles Nadal, Bloor JCC.

§ There are many autism fundraising organizations who solicit funds for autism cures. The autism community (autistic people) is dissatisfied and offended by such organizations touting autism as a tragic epidemic and illness. They believe that the relationship between illness and being autistic is a misnomer misleading the public and the media. By waiting for a cure, autistic people continue to be marginalized. The educational system, while improved since the seventies, still remains unprepared for the increasing number of autistic children.

§ The Autism Acceptance Project will present dialogues and exhibitions to understand autism further and debate the humanitarian issues surrounding it. With out the over-riding moral obligation to treat every human being with value, respect and dignity, we cannot establish acceptance, tolerance and support within society.

§ The Autism Acceptance Project will expand its mandate to not only present annual lectures, exhibitions and concerts that bridge understanding, but also to assist schools and educators with programs that address each individual’s learning needs.


http://www.taaproject.com/

On Memory and Forgetting

Hillel of Greater Toronto brought Elie Wiesel two days ago. I had the privilege of meeting him personally, and listening to him talk at University of Toronto's Convocation Hall, a day before Oprah aired her visit with him to the Auschwitz death and labour camps.

The confluence of my recent meetings, travel to Jerusalem to witness many beliefs divided by walls, how co-existence is possible if tended and policed, and how violent fanaticism is the one of the most inhuman of human traits -- merging with the incorporation of The Autism Acceptance Project and its event this October called The Joy of Autism: Redefining Ability and Quality of Life, against this background of recent events: the abhorrent Autism Speaks video, and the murder of three year-old autistic girl Katie McCarron. All of this resounds deeply within me and should within us all.

Dr. Wiesel questioned this complicated time. "How is it that Auschwitz didn't rid our society anti-Semitism for good" he asked rhetorically. We all say, "never again." Most of us vow to stand up for the impoverished, the oppressed. Yet today, like then, when injustice rises up, people can't seem to bring themselves out of their silence. Lessons of propaganda - what it is and what it means - goes unnoticed and sadly endorsed by others. There is still a population that continues to support fanatical messages without understanding what marketing, positioning means. "Good" propaganda must always contain elements of truth -- it sways you emotionally and in a one-sided way. I do not share the opinions of these mothers (who were edited, by the way -- we did not get to hear their complete sentences), and many of you do not share the same views as myself. Yet, the cause, the purpose of the video is to raise money for a cure. The motive is clear. I wish everything was at least as transparent, even if in this incredibly naive way.

Autism Speaks did wrong. NAAR and Autism Speaks continue to do wrong because they continue to exclude the autistic population from its mandate and research. This is why, as former corporate chair of NAAR Toronto, I withdrew my support and sponsorship. Any organization that uses language against the desires of a culture, race, or type of people who have identified themselves as a culture, is immoral. We have learned to be careful about semantics where race and religion are concerned. Why is there so much problem in understanding the inhumanitarian treatment against the autistic? At the utter agony of this population who struggle to be accepted, and to avoid negative labeling, these organizations continue to do so anyway. Many Europeans deemed the Jews subhuman, undeserving of fair treatment. Many people today do not feel that autistic people understand themselves and purposefully exclude them from autism "dialogue," decisions about research, and continue to take away their right to choose and decide for themselves. Some mothers will claim they would rather be dead than living with autism, while their autistic child plays in the background, alive, but otherwise treated like furniture. Their words about their children are selfish -- how it affects them -- and they describe and talk about their children as objects rather than humans. Other parents abuse, neglect and even murder their autistic children because they believe their lives are too difficult living with it. The lists are long in Ontario of autistic children who are abused to get into Mukibaum. "Autism Every Day" is rampant with parents pulling and tugging on their children (a set of behaviours rather than people) amidst quickly edited excerpts. It is a dark video inciting little hope. It disempowers parents so maybe, just maybe, they feel life is no longer worth living with autism. Afterall, the premise of the video is that life is too hard with autism. It has actually enabled others to excuse the murder of Katie because of this premise. I call on Autism Speaks to retract the video and apologize for its offensive marketing of pity. It has done not only a disservice to the autism community, but ironically, to its very own cause. I'm sure many are suspect of this undignified attempt to market autism.

While neighbours stood silently during the Jewish genocide, there are parallels to many injustices today. How is it we can remain asleep? How is it that one of you may be thinking that the comparison between the Holocaust and Autism Marketing is extreme? Germany was financially suffering. Hitler found a whole race to blame for it. Then, that race ceased to be viewed as human. Then, that race was murdered because Germany thought they would be better off without not only the Jews, but Gypsies, the disabled, the "feeble-minded."

We must stay awake to past lessons in every community of race, ability or religion. We must continue to open ourselves to discussion and debate and accept many views. We must learn to respect a type of people, an autistic people, and listen and acknowledge the messages they give to the rest of us, even if we don't always agree or fail to understand completely. The Autism Acceptance Project hopes to empower both parents and those who are autistic through balanced views, with the over-arching belief that all humans have value, deserving respect, support and dignity. You don't have to agree with every one, but you have to accept those who have the same respect and tolerance for you and for others. Any marketing, message, or research that is underway or disseminated must be done with this value in mind. With all of life's lessons in current and past human atrocities, this is our moral obligation.

But the problems of humanity and its inhumanity continue. Dr. Wiesel said this, and he wondered if we were, as humans, all of God's great mistake. And yet, he believes in humanity. In my byline for The Joy of Autism above, I borrowed one of Wiesel's lines: "Despite inhumane acts, I believe in humanity." This value must be our guide.

"We Jews," he said in his quiet voice, "sing. We sing when we're happy, we sing when we're sad." Life if filled with injustice from which we have an opportunity to grow and learn. There is joy and value in all human life. May all parents find this joy, no matter how hard the struggle; may we continue to raise our voices and words against the wrongdoings of NAAR and Autism Speaks and of those whose special interests are doing harm to those who are autistic.

We have the tendency to rest on our laurels and forget. May we be nudged to remember. May a life never live, or end, in vain.

Da Code, Da Belief, Da Danger

My recent trip to Israel on a United Jewish Federation Prime Minister’s mission was too short. A mere nine days, cut short because I didn’t want to leave Adam for the entire twelve, was filled with snapshots, images etched in my memory forever.

I think everyone should go to Israel and start in Jerusalem. I landed at the King David hotel, opened my French doors to overlook the walls of the Old City – a mere square mile inhabited by 35,000 Muslims, Jews, Christians and Armenians literally on top of one another.


The Old City 

I started at the Dead Sea – a visit to the Masada where 965 Jewish settlers felt it was more important to die for one’s freedom than to surrender to the Romans. Then to Qumeran – the home of the Dead Sea Scrolls – where this cultish sect of Jews maintained the very Jewish traditions that are kept, more or less, today. The fine invisible thread of a people, in fact of all people, and this seabed of belief, lies here in the dry hot dessert.

After floating in the Dead Sea, I slept the rift in time away. The following day I went to the Old City, walking through slippery lime stone streets to the Church of the Holy Sepulchre and touched the ground where Christ was crucified. I walked about the Church, now divided into spaces owned by various Christian sects, walls built to illustrate regions of ownership within a formerly gothic style church – its flow entirely disrupted. The Greek Orthodox community owns most of the church now, but the keys to all the holiest Christian sites are held by a Muslim family – considered non-partisan enough to keep an equality and peace among the divided sects of Christians.

I walked through the Muslim market, to the Cardo (the Jewish market) and in one day, I visited Christ’s tomb and then prayed at the Western Wall. High above that is the Dome of the Rock -- the holiest place for the Muslims as it is thought to be where Mohammed ascended to heaven. That very evening, upon returning to the Kotel (wall) for Shabbat, watching the most religious (Hassidim) of Jews dancing and praying at the wall, I heard Church bells and Muslim prayers over speakerphone under the full moon -- a collision of smells and sounds in the cool evening air. If one listened carefully, the murmurings of history, the prayers -- the sentiments of faith could be heard.

I was here at a more peaceful time in Israel, knowing how dissention and violence can errupt at any moment, but for now, kept at bay by the seam line and the many police stationed around the the old Temple, where Palestinians sometimes throw stones at the Jews praying below. Coffee shops and restaurants are now guarded by security, so when I walk past the Hillel Cafe that was bombed just a short time ago, now rebuilt and filled with customers again, I can rest, a little, knowing that there are now people on the lookout for suspicious characters strapped with bombs.

I rode past the site near Gilo where a bus filled with children going to school was bombed -- the man thought to have spent the night in a neighbouring Arab home.

Jerusalem to me manifests human paradox – to co-exist and yet remain divided by this great ideological divide called belief. Religions claim ownership to holy sites, and other sites are deemed holy by those who want to believe (there is more than one burial site for Mary, for instance). People interpret scripture, and it too has been re-written. On the eve of the Da Vinci Code’s movie release and the idea of the quest for one truth, we must always remember that according to mankind, there is always more than one. Belief is the engine behind such quests and the etchings left by man the multiple truths of many beliefs. Israel epitomizes cultural and religious tolerance despite the violence. The violence epitomizes the dangerousness of belief -- the warbled footings of a human construct.

I have caught up with the news of the past days and the video distributed by Autism Speaks, "Autism Every Day." It is a repulsive video, a type of religious zeal taking away the dignity of a child, of many people with autism and example of how belief can ruthlessly expend human life, or the dignity of it. What is understandable is the "loss" in the sense that we all have to reframe our expectations in life. What is not, is the positioning of the video, the parents who choose to view people with autism as a loss. We can all choose to view and act positively or negatively in life. We all face the same challenges. I felt sorry for all the kids who had to hear their parents talk about them in that manner on the video. A child does live up to their parent's expectations. These parents have very low ones.

Marketing "religion" as this video does, is unforgiveable -- this shameless act of marketing pity to make a buck requires a vigilant response from all of us. As innocent and heart-felt as this video may seem, and in because I'm talking about Israel I will say it here: a visit to Yad Vashem (Holocaust Memorial) made me remember how inoccuous belief appeared on the surface of all European citizenry. It was a belief that the Jewish people were at fault for lowering their economic status, and were subhuman. In the case of these parents, there is no excuse to talk about one's child in the way they have here, or to mention that the only reason you didn't drive off the Washington Bridge (in front of your child) is because of your other neurotypical child waiting for you at home. The positioning of this video is classic propoganda.

In the fractionalized community of autism believers, this religious phenomenon of belief is no different. The complexity of human functioning is like the cracking of a code. Some scientists and autism organizations continue to perpetuate the idea of a “mystery” that requires de-coding. New codes are cracked about genetics and neurology and sects are created. And, as we come closer to "knowing," we begin to have an enormous responsibility to protect and covet all human life.

I prefer to believe that all life is incredibly awesome. At the end of all these paths, do I really need to know what causes autism? Does it really make a difference to know why Adam does the things he does? Or is it our exploitive curiousity? To what end do we study autism to the extent that we do? To help? At whose request -- the mother who might take the life of her autistic child becuase her life is too "hard?"

With knowledge, may be all beget wisdom.

Oops, try again.

“What is Buddy Bear reading?” Adam points the mouse to the right answer. “A book. Buddy Bear is reading a book. Good job.” In the time it took me to fly and return home from Israel, Adam has “mastered” (sorry for the autism teaching jargon – some of this never leaves one’s repertoire after so many years of hearing it…yet another reason why semantics are so incredibly important). If Adam is learning a new concept in the Buddy Bear programs like “categories,” and clicks the mouse in trial and error to find the right answer, the child-narrator says “Oops, try again.” He does, he gets it. Even if rotely, Adam is building his own bridges to understanding the meaning of language. It is up to us, and his environment to put together the rest.

Adam figured out a mouse program that I couldn’t. He learned in a week to pick the “different” icons in order to move forward in the game, how to maneuver the mouse, how to exit the program. Various instructors have had a hard time in some instances getting Adam to pick “the one that’s different” in an “array” of whatever. An instructor will sit with Adam and say the words “pick different,” “find the one that’ different.” Adam may or may not respond. Maybe it depends upon his mood. Sometimes he’s just not understanding what the expectation is if it’s a new task. I mean, I am over exaggerating a little – he’s great at matching, but it seems more so if there are NO SPOKEN WORDS.

It has been a hard time since I got back from Israel. We arrived early in the morning the day before yesterday. Adam heard us come in and sat at the top of the gated staircase and smiled when he saw me. For the rest of the day, he clung like it was life or death – a natural response since his mommy was away for nine days. Perhaps it was a mistake to take him to school and drop him off there. He was miserable because mommy came back and then was gone again. For me, it’s a push to keep life as regular as possible. I am very happy that he is responding in this way. All I am is a little jet-lagged.

We go to shabbos dinner at my mother-in-law’s yesterday and Adam doesn’t want to stay very long. They’re home is tall and a little cavernous – typical of newly built homes. The floors are hard marble and reflect sound all over the house from top to bottom. For Adam, when he’s not in the mood for crowds, it’s a dose of misery – the children’s voices pinging all over the house making it difficult to hear oneself think. Adam flicks his hands, he cries, he’s heading out the door without me. He is very stressed out and when he is, I know the rest of the family is thinking THIS IS AUTISM. Adam’s lack of words, his anxiety and it becomes difficult for others to see what lives and breathes within him. He goes up to the computer and he flies. My little four year old is becoming a whiz – packing in loads of information I can hardly imagine and I keep having to find new computer programs now. (If any of you have any suggestions, send them my way).

A friend and fellow mother at school arrives with dewy eyes to pick up her son yesterday. We lean against the hallway wall, and she confides in me.

“You know what it’s like, Estée. I’m having one of those weeks when I’m realizing what acceptance means. I mean, our lives have changed forever. Is this how we have to live the rest of it? What if [our son] can’t work? Who will take care of him? I just read that only seven percent of autistic people get jobs.” Her eyes begin to well some more.

“I don’t listen to those statistics anymore.” I say strongly, trying to inspire hope, partly frustrated by them. “I’ve heard them all too. I’ve been frightened by them. That’s why we as parents have to keep advocating for school supports, for our children. You don’t expect a person who has difficulty walking up stairs do so without a banister, do you? Why do we expect that of our children? If Adam doesn’t get to university until a little later, who cares? Whose timeline are we on anyway?”

Adam begins to tantrum. He wants to get out of my in-laws house. The noise level rising, he managed to still get through dinner and a little swim. He is right at the door and I decide that I’ve made him wait long enough. I haven’t had much time to say hello to anyone, talk about my recent trip to Israel, and I am tired and can’t win this “battle.” I drive home, really frustrated, and like many other times, wanting also to cry. I open the door and Adam begins to grin from ear to ear. This is what he wanted. He just wanted to be home. It may or may not be his autism. It may or may not have been the noise level. It may have just been a need to have mommy all to himself in our quiet place – a bath, a snuggle and time to ourselves.

Like good ‘ol Buddy Bear, life is full of trial and error. Last night was just a little “Oops, try again.” And we do – we try and try again and somehow we just figure it out.

Ode to Joy

If I could only live a hundred years
because of you
and when considering this world,
only because of you

Adam fell asleep tonight, his little head on my heart. Tomorrow night he will not sleep there. I will not be putting him down to sleep. I will be missing him enroute to Israel.

A friend from Israel was over this evening – he worked with “severe” autistic children in his past. He took one look at Adam and kept saying “no, look at him, he’s fine,” his bright eyes glowing within brown Egyptian skin, his thick Hebrew accent melodic with broad hands gesticulating. Of course I know that Adam is “fine.” I accepted the good intentions with which language often betrays and let him continue. This friend relayed a story of an orthodox man he knew who had nine children, one of them autistic. This man told our friend that the one with autism gave him the most joy of all of them.

I understood instantly, I think. I believe it’s all about expectations. When you have a child with whom you don’t know what to expect, then everything can become a joy. Expectations, and failed ones, imprison us. A vicious cycle, I consider, ensues. Yet, even more than that, at least for me, Adam makes me appreciate life so much more than I ever have. Adam: each and every pain and triumph, his innocence, his brilliance, his happiness and yes, even those frustrations that he learns to overcome he is red hot life throbbing through my raison d’etre.

Frida Kahlo once said that she never wanted to live life after the one she had lived – there was so much pain in hers. I also see the agony of life often (is it that artist’s “angst” or a way of seeing?). It is Adam that has given worth, this life, my life, everything. I know there are many Adams in this world. We all need to take moments, to see, to give us this sense of joy and value in every human life.

Adam breathes life for us all to consider and all to bear.


ARUNDHATI ROY:

NOT ONLY IS ANOTHER WORLD POSSIBLE, HE IS ON HIS WAY. I CAN HEAR HIM BREATHING.

Coming Home

Sorry, readers. I’ve been busy organizing the October event: The Joy of Autism: Redefining Ability and Quality of Life, which is coming along nicely. You’ll be able to access a website by the end of May.

I’m also getting ready to go to Israel without my sweet Adam. It’s like he KNOWS. I likely eminate the “I’m anxious” vibe, or something sentimental. He looks into my eyes, gives me a kiss, snuggles against me. There is never a moment when I travel that I do not miss his sweet cherub cheeks beginning now to draw down.

The week has been full of smiles. The sun is shining everyday and it’s like summer here in T.O. – three weeks too early and making me a little nervous that we’re going to have a summer like Phoenix.

Adam has been talking in full sentences now and then, which I like to report after recent anxiety issues. If he gets frustrated, the words are still difficult. Some sentences are slurred, some are perfect. Even his slurs are becoming clearer, and I have to attribute that to maturity, since he’s had no SLP for a few months now. He is doing well in school so much so that his teacher has said that he no longer needs a facilitator -- he approaches teachers and friends more without one. I attend school fifteen minutes early every day to spy on him. I watch him playing alongside other children and while he still needs a little extra assistance and reminding, all I see is a really happy child. Maybe he's a little happier since we purchased a twelve foot trampoline for our backyard last weekend. It's like his own personal paradise.

So, I cherish these peaceful times when things seem to be steady. It wasn’t like that before. From the time Adam was conceived, I purchased every developmental book out there – I had to know how he was growing, week to week. When he was born, I referenced the same developmental books, making sure he was doing all those things on time. It wasn’t until his first birthday, and after little Adam began reading letters and numbers at eleven months, that we noticed he wasn’t very interested in people -- preferring to watch Maria sing to The Sound of Music as the barrage of invited guests tried to couchi-coo him.

Now, he is very interested in people. He is very social, for Adam. He smiles all the time. He wants to play with others -- I would say he prefers to play with people than to play alone. There is a real joy that I feel in him -- well worth the worry, work and the wait. Beyond that our joy has come from my acceptance of him as he is. It was an acceptance (and learning) that all of those timelines didn’t matter, and were in fact, detrimental to his individual development. It was an acceptance that our lifestyle had to be adapted, that Adam needs more time, more support. Regarded for who he is, we have achieved happiness wrapped in all the everyday challenges and realities. Today, instead of that "tragedy" we once thought of called autism, "masking" our son, or worse "stealing" him, today Adam is a smart, charming, wonderful little boy with the same potential belonging to any other child -- whose future I look forward to instead of brood about.

We are travelling without Adam, as you likely gathered. We've travelled without him before, but I don't travel as much as I used to. I can't stand being away for too long. Last year, returning home after a week in France, Adam heard my voice from the bathroom, smiled from ear to ear, and lunged into my arms. It was one of my happiest moments. It is true that the best part of going away is coming home. Maybe it's the same with autism. The diagnosis is the flight away, the worry is the journey in a foreign place, and your child, my sweet Adam, is home.