My Photo
Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza  

Thursday, March 30, 2006


Gone Golfing

My husband thought it would be a good zen-like experience for me -- the worker-bee who never quits.

I may just go crazy, or maybe I'll have an epiphany through the arch of my swing, or the simple sweet chirp of a bird. Who knows. In the meantime, great dialogue happening over Open Arms post (see previous entry), everyone...thanks. So much to ponder over regarding support for parents in the mire of mixed messages and misinformation.

I also want to make an autism blogger-oath -- someone pointed out to me that Acceptance Therapy I spoke of in previous post is also controversial. So, whenever I mention something that I have not researched, I will say so, so that no-one suspects I am actually promoting it. If I do promote something, I will research it.


Tuesday, March 28, 2006


Open Arms

Recently, I’ve been writing about how friends and family had treated us, with good or innocent intentions, however thoughtless, in an honest vein. I’ve been talking about acceptance to the point where advocacy pools us all into two camps: the curabies versus the neurodiversity types. Sounds like teams for a Harry Potter quidditch match.

The term acceptance is being interpreted as a do-nothing approach in a culture that needs to do something for just about everything. Depressed? Take a pill. ADD, take another pill. Epileptic? I’ll continue on that one in a moment. Pills are a matter of choice. I do believe that there are people who really need them. I also believe that we live in a culture that over-prescribes them. I’ve listened and respect people’s choice to take them temporarily, permanently, whatever. I ask you all, however, to consider the bigger picture for a moment.

All parents (I say this loosely – there are parents who abuse their children), want the best for their children. When confronted with the term autism, there is little chance for a parent to trust themselves and not be swathed in fear. There is an entire culture and history out there that has helped construct that, so I understand that it is extremely difficult for parents to steer away from wanting to “help” their children.

When Adam was first diagnosed, I was confronted by one type of “scientifically proven therapy.” I joined an organization that funded research in support of a cure because I believed, at first, that autism was an illness that masked my son’s true potential. At least that was how autism was presented to Henry and I. Once we enter the “stream of autism,” as parents, there is little choice to believe these messages as sole choices in a culture that does not accept acceptance for people who are different.

I hired therapists who viewed Adam as a pathology and that didn’t feel right. After two months of being in “the autism stream,” I decided that something was horribly wrong with this view. It took a while to trust myself, after hundreds of hours of reading and attending conferences. I really believed that the answer to Adam’s autism, to his progress, was out there somewhere, extrinsic of me. I believed that we needed to impose forty hours of therapy and usurp our family life, and that the pay off would be an end to his autism, or at least make him “indistinguishable from his peers.”

It wasn’t until I read books by people with autism that I began to view autism differently. I agonized over all my choices and prejudices about autism. In this world that also doesn’t support parents very well, it is very difficult to stand on one’s own and not listen to all the things other parents are doing and think you are not doing the best for your child. A parent tends to worry about what they’re not doing.

The odds are really stacked against parents. Our idea of “normal” is an historical construct (see previous posts on this) beginning in the mid-1800’s with Charles Darwin’s survival of the fittest theories. Karl Marx supported ideas of the perfect man in outlining ideal physical attributes of the worker, which was the basis for socialism – an average. We began to construct hierarchies of preferred traits as history continued with its evil side culminating in the Holocaust. Today, these ideas carry over into a consumerist culture, with a billion dollar industry invested in ideas of human beauty and perfection, leaving us otherwise in debt and continually miserable. We fight fat, we fight disease, fight ourselves, and what? Fight disability? There is a lot of effort in fighting and it leaves parents empty and exhausted, not to mention consigns our children as innocent victims -- there is always an innocent victim in a war. How do you think this has effected our quality of life? Isn't it time -- and perhaps we are on many levels now -- to re-define what quality of life is not only for us all, but for people with disabilities?

The anonymous commenter of yesterday's post, who believes autism is the evil taking away her son, feels that acceptance is synonymous with doing nothing. She further makes a fundamental mistake in believing, as a result of a culture that supports her in this false-belief, that autism is the enemy. For the rest of their days, her child will feel that there is an enemy within, and both of them will be forever miserable. People will offer diets and pills, but the autism will still be there.

False-beliefs need to be corrected, and parents who feel this fear might just need our open arms. This is not an attack by any means. It is a comment that there is a prevailing attitude that is harmful to all people with disabilities. There is a marketing machine of research and pharmaceuticals that need to take more responsibility for their ethical mistakes.

This afternoon, I met with JoAnne Dahl fro Uppsala University and Dr. Emanuel Shapiro a psychotherapist from New York who has written books on relating to patients. JoAnne was giving a presentation in Toronto today about,Acceptance and Commitment Therapy (Stephen Hayes, Kelly G. Wilson, Kirk Strosahel) and I received a call to go and speak to these two scholars today. The idea (and I haven’t yet read the book), is that when we have to understand our preconceptions in the way we look and judge people, overcome them and accept others as they are. Once we accept ourselves and others, we make a commitment to support them. I learned from Joanne that some epileptic seizures can be controlled without medication, that children often have seizures because it is a way to avoid physical abuse, a way to stay home with their parents, or a means to feel good. Through acceptance, and working through the barriers to it, the seizures can be controlled by the epileptic person. If this is true, it is an interesting study about non-acceptance and frustation and anxiety. Please note that I am not supporting this theory before investigating it,but want to mention it as an interesting piece of information that was given to me today, and we can all investigate it further. I know little about epilepsy and in brief investigation, have come across papers about techniques for self-control of seizures. I invite others who know the science better, to comment.

I was asked at Adam’s school today by another parent who reads this blog, “How do you do it? How do you just not listen to all the diets and therapies out there?” Did I manage to look at things differently in my art-history classes when we turned paintings upside down to see what we otherwise couldn't right side up? Or was it my philosopher-father who taught me that for every belief, there is an equally compelling other that taught me to question everything? Whatever the reason, this is not about keeping up with the Jones’ anymore. I really care about my son’s wellbeing. I read as much as I can, with whatever energy I can muster in between playing with Adam, and lately, teaching him on the computer – something he has lead me to. I have chosen to view his so-called “behaviours,” as functional needs, his “obsessions,” as interests, and remember how Dawn Prince-Hughes had to repeat words of things so that she could absorb them, or how Zilari’s father fostered her interests by feeding them even more. Adam’s latest “obsession” with calendars has enabled him to type the months out on the computer, and soon, I’m sure I can teach him more about the calendar and how he can use it. If I had viewed all of these obsessive interests as dysfunctional, or strange, I could never nuture Adam's potential.

If I have to rely on the DSM IV, I would otherwise view all of this “stereotypy” as dysfunctional because it seems foreign to me and what other children do. Aggressive behaviour is always a function of non-acceptance and often, frustration. When Adam becomes angry with me, it is usually over something that he can’t do when he really wants to – like writing when his hands are not mature enough to hold a pen well. If I choose, as I’ve learned from autistics like Dawn Prince-Hughes, Zilari or Donna Williams, to understand Adam’s learning style, his perceptual differences, he processing differences, and his sensory differences, and respect them, I come to learn how unique he is and this stuff doesn’t seem that odd at all anymore. Sometimes, we just have to go into someone else’s world to understand them. I try and do this with Adam every day and I believe it can be done in every world, one that seems even more foreign than Adam's.

Acceptance is a commitment to your child. To love them forever, to find joy in them, to believe that they have every ability to learn. If we believe this, we can begin to build and provide the supports they need to achieve. Without it, our children will forever be subject to discrimination and closed doors. A pill won't open them, I assure you. Autism is forever.

To walk in another man's shoes always leads us down the road of compassion.

Monday, March 27, 2006



Adversity’s sweet milk, philosophy.
William Shakespeare

Awakening is process. Some people stay asleep their entire lives. Others have mini-awakenings and slip back into old habits and ways of being, simply because thinking outside of boxes seems impossible, and still others have major awakenings because of what life thrusts upon them. Whatever the cause, whatever the means, the point is to wake up.

This past week, I’ve had a series of conversations, with different people I know well, who have raised questions in me on how to advocate for autism, as it is most complex and challenges our everyday notions of how we live and raise our children. It also raises a personal issue in me about the meaning of friendship. A while ago, I wrote about advocation as the Sledgehammer and the Song, stating we need both styles in advocating for the rights of the disabled. Back then, I was taking a softer stance, trying to be the song, and others with autism challenged me in a positive way. My awakening can be read right here on this blog, in black and white. Awakening begins with an agitation that something is not good enough, and the process of action takes a little longer to develop.

I’ve been gentle with friends who have hurt me with what seemed like harmless comments. Afterall, there was a life before Adam, and that kind of talk didn’t bother me then. Isn’t the onus on me to maintain the friendship as is? I’ve had to think long and hard about that one before writing about events that have shaped our family journey with autism. By my 41st birthday last week, I decided that life is too short and that honesty and writing my story is an important process for me and for others. It is also important to figure out who will continue to stand by me in these important moments that have come to define, in large part, who I am. If I continue to call people “friends,” and I give my time and my heart to them, then I need to make sure they know for what I stand. I like to think that if you are honest with someone, the truest friendship can spring forth, if of course, the person wants to stand with you, and we are all willing to listen to each other. I suppose if I am honest with a friend about how I feel their comments and behaviour have effected me, it means that I believe that that friendship has a possibility to grow into something much more profound. So too, I am open to hearing about all of my follies as much as another lovely friend lifted up her arm in mock breast examination mode and laughed, "Oh no! I've just found an emergent ideology!" It was funny and while I wouldn't call these ideas a cancer, I do claim they can often be more cumbersome than my monthly PMS.

Trouble is part of your life, and if you don’t share it, you don’t give the person who loves you a chance to love you enough,” said Dinah Shore. I like to think that autism isn’t trouble, but it is a fundamental shift in the way I've come to live.

Time has a lot to do with shaping opinion. It is doing a lot to slowly change the attitudes of people towards disability. In a conversation with a family member this past weekend, it left me considering the reality that advocates and people with disabilities are facing.

At a party on Saturday night, I grabbed my crantini, enjoying the people and approached a familiar face. She asked me what I was up to, and to be safe, I said “a little bit of this, a little bit of that,” shrugging it off as mindless party babble. I mean, I don't want impose my "emerging ideologies" at every single social event. Even I need a reprieve! But she probed me a little further, and asked if I would be organizing another exhibition. She got me going about the Canadian Autism Acceptance Network, the organization I am in the process of establishing to organize lectures and events that will change the message that autism does not necessarily need to be cured, but rather, needs to be supported and accepted.

“Why wouldn’t you want to give Adam a pill to cure his autism?” she looks at me as if I am a crazy, irresponsible parent.“To me that seems ridiculous,” she scoffs, drink in one hand, her other hand dismissing me with a quick flick in the air.

“It is not for me to decide. It is up to the person with autism,” I say. “People with autism say they do not want to be cured, they want to be accepted as they are.”

“Well what about the people who can’t decide? I think it is up to the parents,” she sums up quickly. “The child should not be a burden on the rest of the family.” I am not making this up, folks.

I am taking a couple of big swigs of my crantini and turn to Henry who is signaling me to cool down, knowing how passionate I tend to get. “Get me another would you?”

Her face is becoming ascetic, and she is on the attack. “It’s fine for you, you have the means to help Adam,” accusing me of sufficient resources, which translates into more respite, I suppose. “Consider all those people who don’t have the money to help their children,” assuming that they even need the kind of “help” she is inferring.

Of course I have to assume this family member possesses the following presumptions: that I hand over Adam to others, and that raising him is not an active process for me and, that other parents who have less means are incapable of raising children who are not “normal,” or more appropriately stated, challenged, without listening to hundreds of countless stories from them and the daily work they do. Like many of us who do not have to actively engage, she is full of arm-chair opinions.

I slowly begin to draw my sword, as her words have wounded me and I’m not one to cower. “That is why we need to fundamentally change attitudes about difference, so we can get supports in schools, in places of employment,” I try to say calmly, failing miserably, as the pitch of my voice gets a little higher and more intense.

“I don’t want my kids being held back by kids with special needs,” she said to my face. I manage to compose myself enough to think of a respectful response despite the kick in the stomach she just gave me.

“That’s a problem,” and then I get nasty, “because my kid just might be smarter than your kids,” ouch, really low blow. “I’m sorry,” I backpaddle quickly. “It’s just a point, I’m not saying your kids aren’t smart, but I believe it is a right, and is a necessity to mix people of differences so that we can transcend that kind of attitude.” My face is visibly red. She is saying, in essence, that Adam needs a pill to be cured of his autism, that I am an irresponsible parent for not wanting to cure him, and that people with autism should be aborted. She further assumes, perhaps, that like her, I am a couch philosopher, whose opinions come out of nowhere, and I don’t spend countless hours researching and thinking about this.

“I think people should be able to abort if they learn of disability or autism,” she starts again. “I believe people should have a choice. There are families who fall apart over these things.”

“I agree, there are some families who fall apart -- with these things and many other things, and in our culture, it seems ludicrous to not say that choice is a right. But I don’t think there is enough information about what the choices are.” When I was shuffled into a genetic counsellor’s office, they told me the stats, but not anything about what quality of life I would have. I assume also that most people out there fearfully believe that one’s quality of life disappears after having a child with a difference. If I had been told autism when I was pregnant, I wouldn’t have known about the unique gifts and changes in my life that have resulted in Adam, and sadly, he may not be with us today. At this point, I would not change a thing accept the attitudes of people who will effect his life.

At another party, a friend asked me “Okay, people who are high-functioning say they don’t want to be cured, but what about those who are low-functioning?” This is a friend who always asks me frank questions, but I really want to correct her about the functioning issue. While in reality she is right, there are people with more and less handicaps in society, the issue has nothing to do with one’s personhood or inner life or level of intelligence. If we are going to define disability into spectrums, let us do so only in the name of providing supports.

“Some `low-functioning’ people are actually not what you think they are.” I am agitated with my own answer. It seems to be the only way I can segue into the tougher issues of simple acceptance, no matter what level of disability we're talking about. “If they find another means to communicate, like typing, you will discover that despite the challenges, they too do not want to be cured, but just accepted and supported for who they are. Also, a lot of issues you think are autism, aren’t autism. There are co-morbid issues like epilepsy.” But I haven’t gotten to the crux of the matter, and I do not know what it is like to be “severely” impaired, either. I only read the materials by those who are, and meet them, to learn what it might be like to be them.

In terms of advocating for autism, making way for the final point, making autism more acceptable is how it manifests, and usually peters out there. “Einstein had autism,” is not intended to make Adam and people like him more acceptable to a society that has difficulty thinking outside the box. It is to say that there is so much human potential that remains untapped because people with disabilities are not presumed competent – they are judged for how they look, how they behave, and what they cannot do. If we continue to do this, we may be getting rid of all the Stephen Hawkings’ of the world. Likewise, those who are not like Hawking have a right to be here and have a right to find ways to enable their Identity and find personal fulfillment. I am a believer that just because one is severely disabled, doesn't mean they do not deserve to have a full life. Certainly, the onus is on the society-at-large to ensure that they can have it. For the rest of us, the assumption that they, the severely disabled, feel nothing but pain or are unaware and therefore sub-human, is a terrible assumption to make.

Yet another friend this past week read my blog and accused me of self-pity, despite the posts “The Economy of Pity” and “Now What?” I found that accusation a little surprising, actually. This is not a move to seek vendetta for any previous comments that may have hurt me. Instead, this is a dialogue that means so much to me, my son and to others. The point is to have others consider their embedded views and assumptions about disability. I retaliated in an email stating that accusing me of self-pity is like saying the Jews victimize themselves when they raise their own human rights issues and anti-semitism, no different than women complaining about their equal rights, and not so unfamiliar in the example of African Americans fighting white oppression.

Most people would prefer to sit comfortably visiting exhibitions, to view ability, savantism – the sensationalized view of the autistic so that it is at least understandable, dare I say, palatable. They would prefer to be inspired by my words of ability instead of suggesting that we all have to look at ourselves, our collective history, and how this effects our thinking and way of living. The latter requires active engagement by people never wanting, or needing based on circumstance, to actively engage. When another party, the Jews, the blacks, the gays, impose their desires as a community who feel entitled to the same respect and civil rights, and it touches us in the sense that we will be effected in how we live our own lives, where our money goes, and the semantics we use, many of us jolt negatively. The former method of advocacy, the more passive approach, is an easier one where one has to do nothing and the onus is on the disabled to prove themselves worthy to co-exist in a society dominated by so-called "normal" people.

There are inherent dangers purporting this kind of safe message so we don’t offend others. Yet there are millions of people who are differently-abled, who deal with prejudice and sereptitious, or “unintended” discrimination and prejudice every single day.

So I’ve taken my “awakenings” public. I consider every single day in whose name I do this -- if it will positively or negatively effect Adam. I’ve come to the conclusion that an awakening is a call to act. It is a moral obligation. Instead of confined within the walls of academia, universities, we need take the issues to the street --the reformed eugenics movement, medical genetics, bioethics, and the idea of perfecting ourselves -- all of this needs to be considered in how our endeavours in the name of consumerism and progress are still aimed at perfecting the human race. (Joan Rothschild, The Dream of the Perfect Child):

By mid-twentieth century, eugenic discourse had shed its racist rhetoric and supporting genetic justification, thanks in part of evolutionary biologists and the realities of a post-Holocaust world. The movement gained a new respectability and was recast in positive terms, as seeking to improve the entire gene pool and de-emphasizing the coercive measures central to the old eugenics. A reformed eugenics rediscovered the role of the environment, which was joined to biology to bring evolution back into perfectibility discourse. But perfectibility discourse, as redefined by the scientists and reformed eugeniscists, still sought to use genetics to control procreation, now extended to control cultural evolution. The new eugenic rhetoric, however, had little connection to medical practise. It was not until medical genetics developed as a clinical specialty in the late 1950’s, providing physicians with new tools to identify and help prevent disease, that the door opened to introduce eugenics into reproductive practice. But, by the 1960’s, a new generation of doctors did not have a eugenic agenda. The irony was that, just as even a reformed eugenics lost its following, reproductive medical practise gained the tools to mark and weed out the imperfect, according to medically defined criteria.” (The Dream of the Perfect Child, p.52).

Let me move to Orange Life, a magazine distributed by Canada’s national newspaper, The Globe and Mail. The magazine is about fashion and beauty and dedicates a few pages to un-cited statistics, splattered artistically over its pages. I read the stats, thinking about the ideas of late, and one in particular jumps out at me: “1 in 10 would abort a child if they knew it had a genetic tendency to be fat.” Then another, “80 to 90% of women dislike the size and shape of their bodies.” “Canadians spend $5.3 billion on cosmetics annually.” “Americans spent just under $12.5 billion dollars on cosmetic procedures in 2004.” “Young girls have indicated in surveys that they are more afraid of becoming fat than they are of cancer, nuclear war or losing their parents.” This list goes on, within these glossy magazine pages that spead out pages of thin, lanky models with perfect skin anyway.

In 1947, The World Health Organization defined “health” as coextensive with quality of life. Health was defined as “not merely the absence of disease, but a state of complete physical, mental and social well-being…. That definition which set no limits on the scope of health policy or health care, was widely criticized and, though it remains a piece of interagency political rhetoric, plays no scientific role even at that WHO.” (From Quality of Life and Human Difference, David Wasserman, Jerome Bicekenbach, Robert Wachbroit). The authors argue that this definition assumes that the lives of people with disabilities is of low-quality -- that the treatment [by WHO] of the personal and social challenges of people with disabilities and health problems creates a demeaning impression of the impact of impairment. It is the basis for the “pro-choice” movement, as people assume it is “cruel” to bring a child with difference into the world, and that their quality of life is significantly impaired. Ultimately, the source of genetic research and identifying human genes is to reduce the cost of supports for the disabled, in the environment, in the schools, in the workplace – and therefore, to create a perfect, selected race.

I can’t tell you how many parents, friends, have said just as matter-of-factly to me that they don’t see how children with disabilities can be integrated with supports in schools with their children. “It’s too expensive... it will require too many resources... teachers can’t handle it,” are common arguments I hear. In fact, as my family member said to me, most people believe that the disabled will pull their own children down. Yet, not everyone will say that out loud.

I argue that we will achieve a more compassionate race. I argue that these ideas of success and achievement are limited, and people need not fear people of difference. Fear is best killed by familiaritiy, I always say. I argue that we all need to reconsider, as parents and people with disabilities or not, what quality of life really means and how we want to re-define it for future generations.

Near the end of the party and my week of last, I thought of drinking my worries,and all this adversity away. Then, I had a conversation with a family friend who has a child with Cerebral Palsy and it was like meeting with an old friend bathed in sunshine. Once you have a child with a challenge or “handicap” (a handicap means that the source of the problem is in the environment, not the person. It means that if I have hurt my leg and it is a requirement that I climb a staircase without a rail, I am handicapped), there is an innate understanding between people, who accept and love their children for who they are amidst a society that doesn't. Not all parents do this, but there are many I have met who do.

“How do people’s attitudes about disability affect you, has it effected your friendships?” I ask her.

“You get used to it,” she says. “Some friends will stick with you, others can’t handle it. You end up making new ones.”

“Hmmm,” I nod knowingly, cradling my last martini of the night.

“Last year P had a series of bladder infections because her teachers didn’t take her to the bathroom. We had to ask them to take her and now her infections are gone. They just assumed she didn’t have to go, but she won’t make a sound or verbalize unless you ask her. Advocacy becomes part of your everyday life.” She purses her lips and smiles. There is a little bitterness in the journey to acceptance as our intolerant society inflicts the exhaustion.

“She has such a sense of humour, P,” said the mother, "She's wonderful."

I am not just a parent with an opinion. I am a parent listening to people with autism, listening to them to guide me in the process of raising Adam, and in the very messages that need to be heard about good and bad science, how to teach, how to parent a child who feels and perceives differently from me, and who are defining what quality of life means for them. I like to think I have an informed and evolving opinion.

I ask all of my friends, even those with countering opinions, just to come and listen. This is not an attack. We are all at different points of awakening. It’s a process. There is a community of differently-abled people who want their “label,” their handicap, their disability, to be as commonplace as saying someone is black or white. The only purpose of the label should be to acquire the supports one needs to function and be accepted as just another human being in this world.

“Are you Estée?” a woman with a warm face approaches me on the dancefloor.


“I just want you to know that your name came up in my book club when we were reading A Curious Incident of the Dog in the Nighttime and someone suggested that we read your blog.”

“Really?” I am dumbfounded and a little tipsy from the three martinis I’ve downed with debates.

“I want you to know that I really enjoyed reading it. It is really important what you are saying.”

Now that, my friends, is the reason for all of this. Cheers and good-night.

Friday, March 24, 2006


Keep Smiling

Today, Adam had dental surgery. He has soft teeth and bad bacteria that tooth brushing, flossing and flouride treatments just couldn't beat. We arrived, and experience a little from last year's ear tube implants, I must say the hospital staff accomodated us beautifully. A little bit of advocating for Adam's special needs really went a long way....

Adam has gained, quite justifiably, an incredible fear of doctors and their gadgets. Forget the dentist. He won't have anything to do with him anymore. Last week's visit to his pediatrician resulted in screaming, tearing out my hair, and yelling to the doctor "go away" repetitively. All of these events lead us to decide that it was better to give Adam general anaesthesia to get a lot of needed work done, than to subject him to a series of dental appointements.

To prepare, I called the anaesthesiologist a week in advance. I asked to be in the O.R., and that Adam be given a light sedative so that he wouldn't panic once he had to have the mask. I asked that I be in recovery before he awoke so that he wouldn't panic and scream like the last time -- I don't know how he perceives things when he wakes up. At first, when I advocated for Adam, there was some hesitancy. I needed to tell the woman that Adam was autistic and recently developed a severe fear of doctors. Subsequent questions proceeded -- was he "high or low functioning?" she asked nicely.

I said he was autistic and there was no such thing as high or low functioning -- I felt that I needed to stay with the facts that I knew: that he could talk a little but in a circumstance like this may not talk at all, that he would scream if they tried to pin him down, that he would resist everything and would need extra time, and require sedative before anasthesia. I asked that the crew talk softy to Adam and not raise their voices if Adam resisted. I mentioned that Adam panicked the last time he was in the recovery room and that it would be best if he could see my face when he awoke.

"It's scarry for all kids," she said.

"I'm sure it is, but we can't honestly say that we know how he perceives the experience and if he is extra disoriented," I replied. "I feel it is important to support him and make sure he gets the accomodations he needs."

After half an hour of requesting, the very pleasant woman said she would do everything she could and even came to the waiting rooms to meet us today. I had a chance to recap all of these with the head anaesthetist. All of our requests for Adam were honoured and respected, and as a result, this surgery, which took two hours, was much less traumatic than his last one. One might even say, smooth.

Just before surgery Posted by Picasa

In contrast, I saw another autistic older boy today. He was non verbal but made noises. He kept "regarding" lego pieces, his body hovered into a ball on the floor, after the pre-operative examination -- he moaned in terror and the legos calmed him. He tried to resist as they made him transition from this room to the O.R. waiting room. There were more legos to regard when I saw them there, but I wondered why the same accomodation wasn't made for this child who could not advocate for himself? At one point, his mother grabbed him aggressively by the arm and forced him to put the legos away. I was shocked. These were the obvious means by which he was soothing himself. She looked visibly annoyed with him, but I couldn't tell if she was just scarred herself. You know that feeling when you want to burst into tears, but instead you literally swallow them? Well...

Later, that same boy came out earlier than Adam from surgery, walking with his father, but moaning and making sounds like a wounded animal. The distress was clear enough communication for me. His moans became mixed with cries when they passed the doorway, I could see the son try to burrow his head in his father's chest. The father kept talking to him firmly, "shhhhh, shhhhh," moving his own body away from his desperate son's. Now, all of these observations and judgements are mine, I know. But I never felt so sad in my life for a child. There was a coldness there and I simply couldn't relate.

Adam slept most of the day today and when he woke up, came to and later laughed a little, I was shocked. All of his back teeth -- upper and lower -- are silver capped. He looks like that guy from James Bond with all the silver sharp teeth!! I knew they were capped afterward -- the dentist told me. He also had two "baby" root canals. Apparently, his teeth are deteriorating quickly -- tightly jammed teeth and this lactobacillic bacteria that don't give his little teeth much of a chance. Thankfully, his front teeth are still white, but let me tell you, Adam's smile is very different when he laughs. I thank God that these are just baby teeth and they will fall out. The silver will likely dull with time and mastication. Yet, I know his smile will keep on shining, even if a little brighter than before.

Thursday, March 23, 2006


Now what?

Now that we are all beginning to understand the impact of pity, and the interpretation of actions, what is the right thing to do? As a parent, what is it I'm asking for? It is enough to point out the erring ways of others, but what about the things that others can do for me, or for other parents with autistic children? Here are some things from my viewpoint, and I think other parents should add to the list so that we make a wish-list for our friends who otherwise don't know how, or feel the need to tippy-toe around the issue of autism:

1. Ask a lot of tough questions about autism to the parent who is dying to answer you. (Not every parent is the same, some are in denial about their children's autism). Tough questions, the ones that seem offensive, are actually not because you are asking them with an open heart.

2. Don't pretend the autism isn't there. Some people feel that dealing with something politely is to ignore it all together. This is really tough on the parent of an autistic child. The autism is there, our family lives are different.

3. Don't ignore the autistic child and play only with the other children. There is nothing more relieving for me than to see others just hang out with Adam, not just talk about him in front of him. Even if the autistic child doesn't seem to be paying attention, the need of the autistic child is your quiet voice, taking their lead, and patience. And if all it is is sitting with the child, either watching them or playing side to side, but not engaging, so be it. Some autistic people explain that being autistic is like being a cat. They like to circle for a long time, and when they feel comfortable with you, they will pounce.

4. Don't talk "dumbspeak" to the child with autism. Don't talk loudly as if they cannot hear you. Just talk slowly, and if they don't respond, don't demand a response. A friend is not a therapist.

5. Autism is not a cold. Don't ask "is he better yet? or "is he making any progress?" The inference is that he is not good enough as he is. If you want to ask about school possibilities or what his capabilities are, then just be frank and ask.

6. If a friend learns their child is autistic, talk a lot about it. Like death, not all people who mourn need or want to be alone. Don't fall silent. It made me feel as if something was terribly wrong and that hurt a great deal and broke my trust to the extent that I clammed up around that person all the more.

7. Don't ever say to a parent "you are so strong to do this," or "the reason you have an autistic child is because God thought you were special to handle it," or "I'm so proud of you for handling this," kind of gibberish. Having a child with autism doesn't mean we are strong or special, it just is. Open, detailed talk is more important than empty praise.

8. Understand that most parents with autistic children live and breath this every day. It may be the only thing they can talk about for a long time. Most people do not want to be distracted from the autism. My distractions are books, travel, movies and academic discussions and debates. But hey, that's just me.

9. Don't suggest that Adam go on the GF/CF diet because you know someone with autism who improved. Don't assume that becuase you know someone with autism, you know everything there is to know. If you know one person with autism, you know ONE person with autism. Every autistic person is different. If you're going to go on about mercury poisoning, chelation therapy, ABA, or tell me that you have a friend I should talk to to get more information, take a deep breath and PAUSE. Every parent of an autistic child likely knows more than the person or the therapy you are suggesting and may be philosophically opposed to what you are talking about. Better to ask a question about what a parent thinks about the subject at hand than to suggest it might "improve" the child.

10. Many parents, even the fighters, can become depressed. Depression is not a weakness, actually, it can be a great sign of strength. Many great inventors, composers, activists, writers and artists, have been depressed. It often means that the person can see a whole picture that others may not see. There is the depression of the person who cannot see, and the depression of the see-er. There is also joy in depression. The are entwined. What parents with autistic children face everyday is a lot of bias and discrimination in public places, in schools, even from doctors. We are faced with people who believe that children "get" autism like a disease and hear it in the media everyday. Parents can get confused with so many differing messages about how to help with hundreds or therapies and diets, myths about vaccine poisoning and more. There is no one expert or piece of information that a parent can rely on. Some parents are at a war of belief with each other within the community of autism, whether or not autism can be cured, or an autistic fetus should be aborted when the opportunity presents itself in the future. Others, like myself, believe that autism is a way of being and that these pervasive attitudes are a human rights issue. When our children are denied access to camps and schools, or supports within them, it is an issue of rights...I could go on. Anger abounds and many of us may sometimes come on too strong. Forgive us.

11. Understand that there is anger and then there is forgiveness. I have been angry about that event with the friend, but also acknowledge that to "err is human, to forgive is divine." Some friends can grow past debates and disputes, others cannot. I have made many friendships from disputes (you know who you are XX) to find that many of us are exactly the same.

Ah, the point at last.

I want to be able to help some of my friends with the tough questions, or who are just uncertain what to do with a parent who is someone raising an autistic child. Some just know how to deal with me intuitively, others seem to need a little more direction. I'm curious if others have anything to add.

Wednesday, March 22, 2006


Autism is a Netherworld

This is a story for parents and friends of parents with autistic children. Something has happened between myself and a friend that has spewed many bottled up emotions regarding Adam’s autism. This is a friend, like many others in my life, who have dolled out “empathy” regarding our lives with autism. Yet, the problem with empathy is, what is the message? Is this person empathetic because they feel something is wrong or missing from our lives because of Adam’s autism? In fact, empathy from others, leaves many parents of autistic children feeling isolated. Empathy connotes that something is “wrong.” Pretending autism is not a different life in and of itself, also doesn't cut it. Autism is a netherworld. It is neither, in the words of Paul Collins, an ability or a disability. It is a way of being, different than mine.

This story goes back to the weekend of November 28th, 2004, the weekend we suspected that Adam was autistic. We weren’t sure on a Friday that we should decline the previous dinner invitation from our friends down the street. We explained what we had just learned and why we were tentative. But these friends said “nonsense,” and insisted we come despite the news. My eyes were puffy, my heart pounding. The news, or discovery, just three hours old. My girlfriend did not try to mask the tension and instead embraced it, talking about the many learning differences of her five kids and some information she gleaned from a paper she did in school about autism many years before. Adam trotted back and forth in their home, exploring rooms and hallways with a nanny following behind – he was a mere nineteen months old. I will remember every aspect of that day from three o’clock on, and how relieving it was that these friends did not stare at Adam or try to mask the issue with fake empathy.

That weekend was really tough. I cried too much, yelled too much. There was too much advice from friends pouring in like a deluge, and I wondered why I didn’t know about autism before. There was too much information on the Internet, which we scoured the entire weekend anyway. With this type of news, as with any crisis we are confronted with in life, my instinct was “to beat this thing.” Obviously, the early view was that Adam had something, and with therapy and diets, we could overcome it. Since then, I've come to learn that autism is not something you have, it is something you are.

Sunday rolled around. We were invited to other friends but by this time, I really wanted to cancel. We should have cancelled, but Henry convinced me that it was good to get out, as Friday’s experience was a positive one, and this would help get us out of the tunnel of despair. We arrived at our friends' and a playpen was set up for Adam. I placed him in and turned on his favourite Baby Einstein videos. He jumped up and down reciting the alphabet and counted to twenty. Then there was silence. These friends stared at Adam for the longest time, sadness and fear crossing their faces as if they were looking for the defect. Now, perhaps they were thinking, everything was explained. I was enraged. I yelled at them. How dare they stare. How dare they feel sorry for us!

“Oh Estée,” said this girlfriend laced with a bucketful of pity, as if my anger represented my own fear and disappointment over Adam. No, I was angry at their staring, at their new fear of him. I pretended through dinner and cried all the way home. There is nothing more isolating than friends who stare, who believe there is an abnormal, who think it is kind to disperse pity on you. How do you continue to have a fluid relationship with people you can’t be honest with? To this day, I’ve wanted to tell these friends how angry I am with them for not listening, which I interpret as not really caring and I hope this story helps others who are friends of autistic parents understand how pity can be interpreted. I've tried to find the opportunity, but some people are just more open than others to these issues, perhaps. There are lots of people with "pity" who will pull out their wallets at the drop of a hat, who will support any charitable endeavour for autism. It is something they at least can understand. It is a tangible way to help. At least they are doing something for this “horrible disorder,” right? Alturism, however, exists largely for ones-self, not for the other. While I searched early on for organizations to support Adam, like NAAR, I've also come to learn how many people will not accept autism by supporting this organization, thus viewing my son and people like him, as an aberration, an illness that must be cured.

The expectations I’ve had with doctors over the years has been fairly high. Since my girlfriend belongs to this profession, I expected more.Yet, even with Adam’s doctors, I’ve always expected that they will understand sensory defensiveness, and take their time with Adam. To my dismay, I am always shocked how they raise their voices like he’s dumb, actually making the whole experience of a doctor visit more terrifying for him, and how they expect Adam to behave the way they expect. I've had to educate the "professionals," something I did not expect when I was seeking support for our family.

Expectations. There are a whole lot out there about autism. There are a whole lot from me towards the people I love, which sets the bar perhaps a little too high. It is a problem because autism doesn't fit any frame, so perhaps no one is right or wrong here. There are many expectations I’ve had to reframe in my own life and the way I look at Adam and the way I look at others. Knowing what I know now, the daily explaining I have to do about autism, I expect people who know me to listen and learn, not to feel sorry for me. I expect them, as this is the most important thing in my life, to help me disseminate positive messages about autism, as I am confronted day in and day out with people who don’t understand, who get their misguided messages from big organizations seeking to cure autism, from television. I expect them to ask me questions if they are confused. I like open, tough questions. I expect that, because they love me, they will understand that my tears don’t come from the fact that Adam has autism, but rather, from the fact that even those closest to me, still don’t entirely get it, or that I have to advocate for Adam every single day – and that can actually be very exhausting. It is exhausting for messages to largely fall on deaf ears, but it is utterly important to keep on trying.

Failed expectations can leave one feeling angry. I am still angry to a large degree because I haven’t been able to tell this person how I have interpreted her pity, or that weekend episode. I am angry that there is so much prejudice in society and I keep trying to dig deeper so that people might see it for themselves, and how views about normalacy and perfection are social constructs serving only to marginalize people like Adam. Failed expectations, however, are also cathartic and freeing. It means that there are no boundaries and we can, if we choose, transcend all of this.

Don’t mourn for me. Don’t mourn for those with autism. Autism is a world – a netherworld, a place filled with paradox. We need understanding for autistic people as both different and the same; we need acceptance of autistic people as intelligent, but also handicapped in a world that thrives on language and other physical and social functions; we need to provide schools that intellectually challenge persons with autism while providing supports in the environment for sensory needs and different styles of learning; we need you to understand that autistic people see the world differently and may behave differently, but are not to be viewed as a set of behaviours or pathologies that should just “fit in” with the rest of society; we need you to understand that people with autism may appear disinterested but want to belong; we need you to acknowledge that autistic people may want to belong but also need time alone because processing the world is much more difficult; we need you to understand that people with autism want to contribute to society and the rest of us need to support education and occupational opportunities to enable self-esteem and identity; we need you to understand that as a family, the daily structure of our lives is different from yours, but we still want to be included. As a parent, I don't want you to tell me that I need to go out more, no. I need you to support the work I am doing right now.

No dear friends, if I cry today on my birthday, it is because all Adam and I seek is your unconditional love. It is the only birthday present I want.

Tuesday, March 21, 2006


The Archeology of Ideas, Writing and Censorship

I'm a controversial figure. My friends either dislike me or hate me.

--- Toni Morrison, speech, Sarah Lawrence College, Bronxville, New York,1978

Censorship is tough stuff. How much should one reveal or censor a private conversation in non-fiction, or reveal the line of a furrow so deep that my friends would recognize the person in fiction? I recall a course I once took with writers David Bezmogis, John Metcalfe and others talking about this very subject – about using friends and family and people we know in writing, to which the final conclusion was “don’t they know you’re a writer?” In other words, every experience, every conversation, every aspect of a writer's being and perspective is… “material.” I need not ask permission to write and shape things as I see them. I have a right to see things the way I do. I may wrap someone in another "identity," in the context of an event or conversation to protect that person, but even if I changed the colour of someone's shoes, s/he would know about whom I was writing, even if others do not. The question always on my mind is, if the intent is to further an argument, to shape an argument bathed in descriptions of the experience, how much does one have to reveal? How much truth is there in fiction, how much fiction in the truth? John Metcalfe critiqued my draft book about my experiences and noted that even in a piece of non-fiction, the "artifact" is what's left. The craft of writing, the descriptions of people all have a purpose in writing, in an argument. In writing, both fiction and non, everything is shaped by the perspective of the writer. Further, there is not one fiction writer I've met so far, who does not "use" all the people in their lives to shape their characters.

This blog is about discussing human diversity within the context of acceptance. Once one begins to think about things, to go on the archeological digs of "why" and "how" and "to what end," it is natural to consider how one lives as a reflection of belief. Every point I raise is something that is on my mind in this vein. Somtimes I reflect on the origins of our current ideas, as innocuous as they may seem, to question how pervasive our ideas of perfection are within this context. Everyday conversations are examples of ideologies, known or unknown. I can’t censor my thoughts or my words and no one should try. Explorations into how we feel, think, and what we do are essential in looking at the complexity of autism.

I've had hundreds, if not thousands of episodes and conversations yet to write about in the subject of autism, and hundreds of more personal past "mistakes" in the way I've lived which juxtapose my emergent ideologies. I've had friends who with the best of intentions, have left me feeling utterly isolated in the way they view autism and disability, the way they disperse "empathy", and the way they look at and behave around Adam -- I intend to write about these experiences in order to continue to promote awareness and understanding. This is important stuff to write about, the meat and potatoes of living with autism. Should I edit the conversations? Censor the characteristics that shaped the experience? The ones that evoked strong emotion in me as I write about my experiences will likely remain on the page.

I may be wrong and I may be right in my evolving opinions, and the importance is in the asking "what does this mean," and "what is the origin of that idea?" Here are some other good quotes on writing I thought some of you might enjoy:

David Ben Gurion:
Anyone who believes you can't change history has never tried to write his memoirs.

Denise Levertov:
One of the obligations of the writer is to say or sing all that he or she can, to deal with as much of the world as becomes possible to him or her in language.

Jessamyn West:
Writing is a solitary occupation. Family, friends, and society are the natural enemies of the writer. He must be alone, uninterrupted, and slightly savage if he is to sustain and complete an undertaking.

Ralph Waldo Emerson:
Put the argument into a concrete shape, into an image, some hard phrase, round and solid as a ball, which they can see and handle and carry home with them, and the cause is half won.

Margaret Chase Smith:
Moral cowardice that keeps us from speaking our minds is as dangerous to this country as irresponsible talk. The right way is not always the popular and easy way. Standing for right when it is unpopular is a true test of moral character.

Martin Luther King, Jr.:
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.

As I learned from writer teachers and friends, the stuff of life, of conversation, is material. I do, however, believe in respect. It is difficult to draw the censorship lines in writing.

First say to yourself what you would be; and then do what you have to do.

Sunday, March 19, 2006


The Economy of Pity

My background is unique in discussing the economy of pity. I began my circuitous career as a curator of art, later a director of a large event, then a corporate fundraiser and marketer for two major health charities. I also summized that art made me an effective beggar of money (not many love to fund art, to my chagrin). After Adam was diagnosed with autism and NAAR came to Toronto, and coming from Jewish family entrenched in the Hebrew ideal of tzedakah (helping those in need), it seemed natural for me to raise money for the cause that was dear to my heart: autism. At the NAAR Kick-Off Luncheon, I was asked to speak about autism. I sat and waited for my turn as Corporate Chair, becoming agitated already with what I was hearing. I was listening to leaders talk about how they “lost” their child, how devastating it was for them, poems elicting a tremendous amount of pathos from the audience. In my speech I instead spoke about research to help us understand our children with autism better. I did not talk about cures – I spoke about awareness. It was my hope that others would share the same optimism. I quoted Paul Collins:

“Autists are described by others – and by themselves – as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin what it means to be human. Think of it: a disability is usually defined in terms of what is missing. A child tugs at his or her parents and whispers, “Where’s that man’s arm?” But autism is an ability and a disability; it is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.” -- Paul Collins, Not Even Wrong.

I was approached afterward by educators and parents, who said they thought my speech was the best. While I am a very good speaker, I considered that my words about acceptance was the source inspiration as opposed to those mothers weeping at the “loss” of their children. It didn’t take long – a meeting with Glenn Tringali, a phone call with Alycia Halladay, appealed for my continued support to sit as Chair of NAAR. I remember sitting at The Four Season’s Hotel with Mr. Tringali, saying that if I joined, my mandate would be to raise awarness – the brand that I was selling. I addressed a consideration when Dr. Buxbaum made a quote about being able to prenatally test for autism, and to what end. A snarky email later, addressed to me by Joseph Buxbaum, and no return call from NAAR agreeing to my wish, I quickly realized that NAAR’s marketing appeals are not acceptable, if in fact inflexible. This is not to say I haven’t met scientific researchers funded by NAAR who are themselves questioning the marketing and the research, and in order to protect them I will not reveal their names. Believe it or not, there are scientists out there who have come to the same conclusion that I am revealing here. Similar to the difficulty of pulling away from ABA to try other methods of teaching Adam, leaving the gods of research initially made me uneasy. Afterall, what might the research tell us? Who was I, not scientific in the least, to question the gods? Once looking carefully at the bulk of research, I realized that it will go on with or without my support. It doesn’t need me. There are people who will find the genes, who will sell the pills, who will abort the fetus. The only thing I can keep doing, we can keep doing, is to keep talking. Give speeches, make exhibitions, run media campaigns. Did you know that eighty per cent of fetus’ with Down Syndrome are aborted? Isn’t that number shocking? I think of little B running down the hall of Adam’s integrated nursery school, a huge smile on her face, living life to its fullest and wondering what is wrong with my wiring that I’ve missed out her type of joy. Having children who are “different” is an unexpected experience, a positive one, and I keep trying to figure out how to impart a message of experience to others who have never had the challenge, and ergo, the ultimate benefit of one.

NAAR recently posted a book about accepting autism on their website. While it’s an attempt, I still appeal to them to change their fundamental error – to suggest that autism requires a cure at the utter dismay and disagreement of those with autism. I’ve asked NAAR to consider giving me an opportunity to voice these concerns, to change their semantics, and to conduct research only directed by autistic persons and to keep one ultimate goal in mind – the acceptance of and quality of life for families with autism as they are. Change, if it happens at all, will be slow. Now partnered with Autism Speaks, NAAR has an annual budget in excess of $30 million, with CIBC World Markets in the US trying to raise more “miracles,” and Home Depot is doing their part donating $25 million to the cause.

I certainly can’t offer a matching grant of that amount to get NAAR to listen to me, but I am a parent who “can speak up for my child,” and do so by listening to others with autism as well. I can’t compete on the same playing field with cause-marketing thrusts to make companies appeal, with their good intentions, to customers. What I suggest companies are missing is a due-diligence. Do they know what brand of pity they’re paying for? In War Against the Weak, Edwin Black writes about the first three decades of the 20th century when American corporate philanthropy “combined with prestigious academic fraud” created the pseudeoscience of eugenics that “institutionalized race politics as national policy. The goal: create a superior, white, Nordic race and obliterate the viability of everyone else….How? By identifying so-called `defective’ family trees and subjecting them to legislated segregation and sterilization programs. The victims: poor people, brown-haired white people, African Americans, immigrants, Indians, Eastern European Jews, the infirm and really anyone classified outside the superior genetic lines drawn up by American raceologists.” We always have to ask ourselves what is the end to this means of genetic research. Must we simply accept the good with the bad in the name of progress?

War Against the Weak By Edwin Black discusses how American corporate philanthropies launched a national campaign of ethnic cleansing in the US. Posted by Picasa

It seems to me, after having made hundreds of solicitations to corporations myself over the years, that no one thinks twice about the brand of pity they disperse. Pity is one and the same and it just makes us plain good. There is little discrimination going on the world about who is soliciting for what. So long as the message is filled with a little bit of logos and a whole barrel of pathos, the cause is whitewashed under the guise of “doing good.” It is a problem with altruism, actually. This is how Nietzsche felt about so-called `benevolence’:

Is it virtuous when a cell transforms into the function of a stronger cell? It must do so. And is it wicked when the stronger one assimilates the other? It must do so likewise: it is necessary, for it has to have abundant indemnity and seeks to regenerate itself. One has therefore to distinguish the instinct of submission in benevolence, according as the stronger or the weaker feels benevolent. Gladness and covetousness are united in the stronger person, who wants to transform something to his function: gladness and desire-to-be-coveted in the weaker person, who would like to become a function. The former case is essentially pity, a pleasant excitation of the instinct of appropriation at the sight of the weak: it is to be remembered, however, that “strong” and “weak” are relative conceptions.”

Therefore, the whole idea of charity segregates people into strong and weak and forever keeps the “weaker” members of society at a disadvantage, serving only to marginalize them. On the other hand, where would the Stephen Hawkings of the world be without the help, the selfless behaviour, of others? Love from his caregivers was what kept him alive, and archeological digs have revealed the remains of people who evidently lived for long periods of time being crippled.

I will posit here, in this initial draft, that Autism is the one “disability” that may change the course of philanthropic history, that may be able to jolt citizens into giving with knowledge as well as with heart. Autism is neither a race nor a disability, it is a way of being. It may even be viewed as a course of human evolution, and most illustrative of all human difference. On the surface, it appears alien, and from within people with autism maintain huge capability and intellect, often able to communicate themselves through alternative means, if presumed competent, if given the chance, much like Stephen Hawking. Organizations that seek to fund this “difficult and mysterious disorder,” to "cure it," as a war waged against the autistic population, instead of listening to them, may become baffled at the ability of autism, despite its superficial dysfunctions. It is finding itself at an intellectual and philosophical divide with those they are seeking to cure. Parents are baffled, or angry. Afterall, aren’t they just good people trying to help others? Shouldn't parents who struggle day in and day out, whose expectations have been taken from them, have pity bestowed upon them?

I say no. I say that as difficult as it is for many families, who experience a "spectrum" of challenges, this is life's test. "The best thing about the future," said Abraham Lincoln, "is that it comes one day at a time." We have time to reframe our expectations and to find joy in autism.

Corporations, innocent and unknowing of this divide and the abilities of those with autism are giving money – perhaps one day to find themselves confronted with violations against human rights. I don’t think they are prepared. People with influence (those in control of the media), appear shiny and credible in the eyes of fellow CEO’s. Logos – the rational appeal of statistics and numbers manipulated for Pathos is the thrust of this economy. The most “underfunded disorder,” “1:166 children affected,” mixed with a little “epidemic” lingo is enough these days to convince a CEO to give. On top of that some media profile, signage and press releases for being a “responsible corporation” -- another rational and economically sound reason to give.

Autism requires donors to do their research. It requires others to talk to people with autism as the experts of it. It requires philanthropists to fully understand the motives of charities asking for money for the sake of a cure.

"Autism is finally speaking," says Suzanne Wright. "Now the world will listen...Be loud, be brash, be emotional, be angry," added Bob Wright.

"Don't accept it," Ms. Wright continues.

Yes, Mr. And Mrs. Wright. Autism is speaking. But not through you.

Saturday, March 18, 2006


New Identity?

In the name of quasi-anonymity, of standing up by hanging low, similar to registering for votes, but never talking about a stance with colleagues and friends, I belligerently make a comment about the need to hide ourselves in order to protect others. A reality perhaps, but a shame indeed.

How's this one?  Posted by Picasa

Friday, March 17, 2006


Anonymous Critics

I have an anonymous critic. It's not that worry about different opinions. I have to wonder, however, about the validity of anonymity online. It has raised a whole lot of issues in my mind about debating on an even playing field.

I find this anonymity fascinating. I have to wonder who and why this person wishes to state their opinion without revealing themselves. Afterall, this a respectful dialogue. We fellow bloggers respectfully disagree with one another. Thank heavens for opinions, for the ability to learn from one another, and in the words of a blogger with whom I had a heated debate once, someone I came to admire, to have a opportunity to “stretch ourselves.” Inflexible opinions are not healthy – the ability to empathize with one another is our ultimate goal in the name of human rights.

I suspect this anonymous person has written me before, expressing some opinions about me in the past (if it’s not you anonymous, I’m sorry, but how can I know?). I asked the person, who spoke of me as if they knew me personally to “come out of the bushes of anonymity.”

Anonymity reminds me of the cowardice Nazi youth who slithered into Jewish graveyards to desecrate them in Toronto two years ago, to hide in the night to paint swastikas on the doors of Jewish homes. The Internet is also a scary place. People don’t have to be true or real. They can put on personae, lie about their identity. I often wonder about this when I am blogging to personae instead of "people" and I think it’s something we all ought to consider. If we don’t set a precedent here, to reveal our identities in these important discussions about human rights, then is there a point to the Internet, to the Blog?

Consider another couple of quotes I pulled from the Internet:

"Looming as the new preferred method by those who seek to diminish the quality of life of Jewish Australians is harrassment through electronic mail. The Internet has made it easier for individuals to be anonymous, reach large audiences adn operate with very little expenditure..." From Sticks and Stones and Hate Mail, Australia/Israel Jewish Affairs Council, 1999.

I think of Anthrax, and the surreptitious acts of terrorist organizations that veil themselves in anonymity.

Here’s another comment on Internet communication:

"All the same, I believe that the most tragic outcome of promoting sites like is that it will only foster even more sterile and untruthful interactions between human beings...If people mistrust each other so much that they're afraid to reveal their email addresses and phone numbers, why in the world are they bothering to talk to each other in the first place?" From E Commerce News Internet Anonymity Promotes Cyber Cowardice.

"To be one's self, and unafraid whether right or wrong, is more admirable than the easy cowardice or surrender to conformity." -- Irving Wallace.

As Ghandi alluded, the point of sharing opinions is to see ourselves, the err of our ways, to see others, and to better mankind:

"It is good to see ourselves as others see us. Try as we may, we are never able to know ourselves fully as we are, especially the evil side of us. This we can do only if we are not angry with our critics but will take in good heart whatever they might have to say."

Still hope you, anonymous, will join us for all you are, in the comments section.

Thursday, March 16, 2006


Don't Get Too Cheeky

Okay, you've all seen the inevitable materialize. Autistic basketball player goes to Hollywood.Don't get too cheeky, don't get too critical...we still need heros. I like the fact that he says that he is just who he is. The last line in the article says it all, doesn't it?

If he didn't get this publicity, (and yes, there is a lot more to his story than a two minute frame),the world might not be seeing the positive, way of being, aspects of autism. A Hollywood story isn't always that bad. The public really does have a TV attention span, you know.

What's in a Name?

Well, it's happening. I've begun incorporation for Canadian Autism Acceptance Network -- C.A.A.N.

The organization will be the umbrella under which the exhibition and lectures this October will be organized -- for the purposes of raising awareness about the need for acceptance of autism.The organization will not advocate for a cure. It will support research only directed and requested by autistic persons. The primary goal of the organization will be event and media driven. Participants in this year's exhibition who are confirmed are:

Donna Williams
Michael Moon
Dr. Nehama Baum
MukiBaum Centre for Complex Disabilities
Jonathan Lerman
Caren and Alan Lerman

I also have a list of prominent unconfirmed participants, who should be confirmed shortly.

I am looking for Canadian autistic persons to consider joining the board. Please send letters of interest to:

Tuesday, March 14, 2006


The Difficulty of Knowing

There is an old adage: Ignorance is Bliss. In the case of liberal eugenics, human genome research and ethics, some people might think this as they read on. As we come closer to discovering what makes us physically human, we come closer to becoming god-like. In the name of progress we fly higher and seek control. Apollo had a son called Phaethon, who was human. Phaethon nagged at Apollo to let him borrow the sun chariot and fly across the sky. Finally Apollo agreed. Phaethon proudly drove the sun chariot up into the sky, but then he lost control of the horses. The sun chariot dived towards the earth, burning everything. Finally Jupiter had to stop him with a thunder bolt.

In the name of progress, human genetics, biotechnology and the economic engine that will profit dearly from it all, this movement will go on. To what end is yet to be determined. In the meantime, let’s keep talking about what this all means as my son hugs me from behind with his cherub smile this morning.

I’ve been pondering my first pregnancy with Adam. The expectation of him. Needless to say, after thirty-six years of waiting, I was ecstatic. I was in Barcelona when I found out, unknowing of the apparent irony of Gaudi’s warped buildings, Dali’s surrealism – beauty born from "juxtaposing unrelated systems and altered established visual order."

When I came home to Canada was when my apparent joy was met with foreboding – my first ultrasound and nuchal screen and then shuffled in to a genetic counselor’s office to talk about the 1 in 244 chance of giving birth to a child with some kind of genetic defect. I think they told me what kinds of defects, but the discrepancy between them obviously meant nothing to me because I can't remember. That was a like throwing a bucket of water on my flame. Not having children before, I had no idea I would be subjugated to a tiny office with a stranger giving me statistical factoids – whose supposed disengagement angered me. In fact, I remember feeling pressed, asking questions of what it all meant…I just remember that severe countenance giving me probabilities devoid of empathy.

I called my obstetrician and asked him what it all meant. Did he or did he not feel that from my test results I was going to give birth to a defective child? He tried to root himself in statistics, reserving himself to the facts instead of any judgment. I searched for a tone of voice that might allude to an opinion. I found myself in an unexpected ethical debate with myself – strewn into a situation of making prenatal decisions about my child that I was wholly unprepared for, and in fact, given a choice that I never asked to have.

I felt jilted out of my joy. The news of risk not sobering, just agitating. It was overwhelming information. I did not know what to do with it. If I wasn’t so excited with having my first child, would I have listened to that counselor and aborted? I did not have the amniocentesis. Sheer excitement and determination was the force behind the birth of Adam.

Doctors, geneticists and genetic counselors are trying to remain in the neutral ethics zone. Remembering the false neutrality of that counselor, how I was shuffled into a genetics counseling office without given the choice, the warning of what that was going to be all about, I consider that the scales are tipped against this whole movement towards the rights of the disabled, and for that matter, the fetus. It is said that The Human Genome Project will identify over 100,000 genes and diseases without cures over the next ten years. I think it is obvious to state that ethically, we are not ready for this. What do we do with all that information, all that choice? There is difficulty in knowing.

I take these thoughts to daily life with friends. I know a dermatologist, working with people's desire to transcend time, people's vanity. I remember once how she considered to pin back her son’s ears for fear that he might be ridiculed in school. Of course, readers who know me will understand how absurd I feel this procedure is in the context of human difference. Let him have his ears, I say! Let him exult in his uniqueness! Yet, I know she is trying to protect him, as all parents are inclined to do. What cost is her seemingly innocent motive to “protect” her son, to the rest of us who fight furtive discrimination every day? Discrimination is so deeply rooted within us, perhaps within human nature itself, that we must tear down concrete walls with bare hands.

There are many people who put their children on Ritalin because kids simply cannot not perform in school or complete their homework. The Ritalin “is amazing,” they all say. “Joe’s [made-up name] teachers have said he is doing so well.” The teachers are satisfied that little Joe doesn’t act out in class anymore, now uniform and compliant, I suspect. "Joe" can now focus on what he has to do, I'm not saying that in itself is a bad thing. Parents are often left with no other recourse. What I am saying is that it's a shame that the "system" won't accept him for who he is. A friend asked me once “what if there was a pill Adam could take…” Ah, that thought was for a moment, tempting. I could escape all my worries if Adam’s autism could be cured by a little pill, right? This is an excellent question. What if? Would I stop this rampage about discrimination and eugenics if Adam were, all of a sudden, normal? After all, what would I have left to fight for?

Little pills, escape from any kind of struggle or pain, is all too tempting, I might speculate, for all of us. What kind of absurd world might we have if we were all operating on even-keels, on pills? (I always tend to use Ritalin as an important part of this debate). I think of a Stepford Wives world here. Within the “normal,” rigid classroom, a child who acts, or thinks, outside of the box is rejected. I must admit that to undertake the alternative, to stand up against the school system is a difficult and time-consuming undertaking. My friends do not willingly choose the path of such resistance, nor are they in a position where they need to. They are extremely intelligent and hopefully will recongize the importance of this posited argument.

I have a big reason to be concerned. My father was a victim of the Lebensborn movement in Germany, and if not specifically bred for Nazi parents, he was stolen from a Polish or Scandinavian family and put into a German one in Breslau “for his Arian features.” As a result, he had a difficult relationship with his parents and after coming to Canada in 1952, left his parents at fifteen, the pain of being any part of Nazi Eugenicism a complete repulsion to him at that young age. He tried to convert to Judaism. His daughter brought that realization full circle as he now has a Jewish grandson.

I am considering today how the Eugenics Movement has too much steam in its disguised innocuous research, and ideals that can be traced back to the universal worker of Karl Marx, who sought uniform and idealistic physical traits of workers, for the sake of the nation.

Just how much do we conduct science for the sake of mankind? Or is it the quest to be like the gods? What drives us in these quests? The greater good, or control? If we want a greater good, we always have to take the other, more unpleasant side or progress. We also have to understand that all words may sound the same, but have entirely different meanings.

I am certainly not saying that most people are evil or have evil intent by actively participating in cleaning up the human race. I am not accusing parents who give their children Ritalin or consider pinning back their ears for aesthetic reasons.I am suggesting, however, that the pressure to belong, to fit in this "normal box" is immense. I am also suggesting that wrapping up language and intention in palatable words, ones that seem to be harmless, or disguised for the greater good of humanity, may in fact be just the opposite. Hitler’s propaganda promised a better Germany – more jobs, economic stability. You can wrap up intention in all kinds or good words, but it doesn’t mean the same thing.

In looking deeper into my social responsibilities, in putting some intention and action behind my beliefs, I have to reconsider the rights of animals, the rights of minorities, the poor. I can’t sit back and scratch myself debating this intellectually as I sit comfortably in my chair. I am considering how I can best participate. I am incorporating a Canadian organization which will deal with acceptance. Yet, I consider that as the years progress, this will evolve into an organization to undertake political action. It is unknown territory for me (any words of advice are welcome at this stage). Let me begin with incorporating and organizing the exhibitions and lectures this fall. (help me with the name please – I like Action for Autism and Project Ability – both out of the UK). I’m not exactly sure where I’m headed. There is difficulty and responsibility in knowing.

Monday, March 13, 2006


To Live is So Startling...

To live is so startling it leaves little time for anything else --Emily Dickenson

We didn't make it to Vail. Life intervened. This time, with a flu bug and a nasty fever. Henry and Max have gone ahead, leaving Adam and I alone this week to get better and perhaps discover the unexpected.

There are a few things going through my mind -- a luxury of unscheduled, impromptu time. I am going to be 41 next week. I have two frames of mind right now about growing older:

1. I'm not really ready (or am I?);
2. Let the wind blow where it may (this thought takes a little for effort).

Children punctuate time. Before Adam, I was husband-less and free, for a time. I met Henry with four children and that stopped this nomadic existence -- moving senselessly from here to there. I could forget about obligations when the kids were not with us -- we had them only part-time. I got married and had my first child at 37. The mind-clock began here. Time is always felt most dramatically in conncection with birth and death. On Saturday, I chatted with Henry's 92 year-old grandmother. "Where does the time go?" she asks. Adam will be four in April. Where does the time go? It's been two years since he diagnosis. Where did that go? Perhaps it is good to remember that the grim reaper looms not to far off in the distance, that time is a huge train station clock hovering over our heads.

My favorite clock at Musee D'Orsay -- Henry, Joe and Max in the background. Posted by Picasa

We can measure it, forget it for a while, melt away within it, distort it, but time will keep on ticking. Time, it's the only thing we really have -- it cacoons my mother who has stuggled with two bouts of cancer, carrying her fragile body, for now, with grace. It wisps around my father whose spirit remains timeless, but peppers his blond hair with grey, freckles his Nordic skin a little more each year. It has made its first sinister introduction to Henry in his aching hands, and me, while I don't remain unscathed, untouched by time, I hear it brushing against my door, scurrying busily about the neighbourhood. I watch as it nears my bell -- all too aware that it is coming close. If time is the only thing we really have, let it be full of events, people, places, moments, and joy (we can feel joy only in the presence of its counterpart: pain). I cannot fathom a life without time framing it, without beginning, middle and end. Henry does not like to think of the end and would take the immortality pill if it were ever available. I suppose I need clearer boundaries.

I've been re-reading comments on my blog. I enjoy re-reading well-thought out comments. In my post The Lonliness, The Struggle and the Profound Joy of Autism, Lisa Fischler said...

I highly recommend the book "The Spirit Catches You and You Fall Down" which is the story of a young girl with epilepsy. The book deals with issues of how we define illness, quality of life, adequate treatment, etc. according to our cultural beliefs and practices. Many cultures don't tolerate disability of any kind, but some consider it to be part of human nature and are able to see what is special and, more to the point, human about those in their midst who are a bit "different".

Maybe it's because we are so obsessed with success that we have a hard time appreciating what is joyful and worthy in any life, even one that is painful. Westerners have an aversion to difficulty and pain, to the point where we can't understand why someone would "want" to suffer - which is odd, considering that suffering was once taken to be noble and spiritually uplifting in Western religious traditions. I personally found a lot of value in a spiritual path that teaches that we don't have to "do" or "be" anything special in order to fulfill our life's work - that just sitting and breathing, or whatever you're doing, is "enough". Being 100% engaged with life, whatever life might look like, is doing life's work. This perspective says that life is worthy when you're imprisoned or oppressed, when you're ill or dying, when you're shunned or beloved or misunderstood.

And it has always struck me as foolish to write someone off as "damaged" when I've personally worked with kids who have defied the odds. I look at Helen Keller, Stephen Hawking, Temple Grandin, and other notable examples of folks with one difference or another who've been able to rise up, and the common thread I see is that these are people who fully engage with life and somewhere along the way had people believe in them at a critical time in their development. As long as our kids have that, who knows what could happen. Not that our kids need to be physicists or PhDs - they already are who they are. Just like the rest of us.

Considering my thoughts about another looming birthday, about the journey so far with Adam, and how I see he is growing before my eyes more quickly than I could have ever imagined, I have to let Lisa's comment envelop me. I have to remember that my life, my time, is not defined by how hard I work and what I seek to achieve, but by simply being. Success and achievement serve one final function -- to remain immortal. Gilgamesh (see Epic of Gilgamesh) worked so hard to achieve immortality and it fashions the way we live today. It drives business people, authors and artists to make art, write books, build buildings with their names on them. It is a difficult construction, this immortality business, this quest for Holy Grails, for Utopias, for Ideals. It provides steam under Eugenicist movements, while at the same time, inspiration that we all have something to offer in this world. Inspiration, Aspiration, Hope and Being also have their counterparts. It is up to us what we decide to build with our blocks of time.

I wonder if I can die content with the fact that I'll just be dust in the wind -- immortal only as long as Adam lives and remembers me. He is, however, my life's work. Time will certainly get me, but my legacy will live on, if only in him.

Friday, March 10, 2006


Bikini in my Baggage

I am frantic, so why the hell am I sitting here and blogging today? In a few minutes I will return upstairs in the midst of sweaters and toys that will fly around the room as I pack for Vail. I will confirm the many reservations I have made to accommodate Adam and our family.

Blogging is a nice escape from the inevitable hectic journey ahead. I have closed my door and am drinking a nice LARGE cup of coffee. I really hate packing. I hate unpacking even more. I hate planning how many pairs of socks and underwear I will need. I labour over which outfit I need for the evening – what if I don’t feel like wearing the one I chose come Tuesday night? How I yearn for those days when I could just pack a little bikini and head onto the plane – without making any plans. Okay, fine. I’ve never walked on a plane with just a bikini in my bag, but oh how I long to. Imagine if I can just walk into the middle of some strange place and let experience become me -- to let it unravel me, shape me, and become part of my memory forever. I came close many times. Living in Europe, when I had little money, it seemed I could breath in everything more fully, walk for hours, meet new people, taste the food sold on the street – flavours, locations, the people who with whom I ate -- still a colourful memory today.

I took reprieve in cathedrals on cold walking days, reading the story of stained glass windows, meditating and keeping warm amidst the low rumble and shuffle of visitors. I ate bratwurst with sauerkraut in the Markt between classes, watching German folk buy their fruits and vegetables at a price that choked me back then. I’ve walked the cobblestones of Strasbourg, close to where I studied and the fanciful boulevards of Paris from the outside looking in. I loitered along the solitary paths of the Black Forest Mountains after a snowfall, nary a cow or person in sight the higher up I went. I’ve traversed to carpet vendors in Turkey, and sipped Turkish coffee in stalls on hot summer days, stopping to listen to Muslim chanting over speakerphones, golden turrets above my head. I’ve visited David in Florence, and walked in the footpaths of great men. I’ve waltzed to grand Vienna and visited the singing hills of Salzburg, feeling Mozart not too far behind. I’ve entered the universities, the music schools to hear other student’s aspirations climbing do re me in cavernous halls, history listening. I remember the full taste of Schaumwein (Strawberry Wine), a three Deutsche Mark luxury to the pops and cracks of New Year’s Eve in Freiburg and recall the vision of gypsy huts behind treeless and grassless apartment buildings in the Slovak Republic, the decorative embroidery of table clothes and doilies trying to brighten the history of their Marxist oppressors. I’ve hitched rides to see jungles and monkeys on remote parts of islands – visited only by die-hard surfers searching for bigger waves. I’ve soaked in sunshine with the smell of warm beer and roasting chickens on the west side of the Atlantic, where African winds blew gentle kisses across my cheek.

I long to see the colourful markets of India punctuating the duller shades of a spent land. I hear the voices of Ethiopia call me to see with my own eyes, the suffering. I wait to visit Israel this May, to take a dip into Middle Eastern sand. Without walks, without journeys, without time, without freedom, we cannot discover. I’ve been on the outside looking in, and now with age and a little more money, been on the inside looking out. It is these poorer times that remain the most endearing and memorable, as well as the times when spontaneity had little use for money. The rich man’s vacation is sometimes very poor by comparison.

The family vacation: Hmm...structured, another home-away-from-home. Yes, Adam will indeed benefit from a new experience, and yes, he will likely enjoy all this novelty, and yes, it will be a lot easier to have everything around me, easily accessible. Daycares, swimming pools, shops, movie theatres. The first-world has become a series of Disney locations – one-size-fits-all, with the conveniences of home.

There is something to be said, and welcomed in convenience, in being prepared. I will think about transitioning Adam onto the plane, making books for him to visualize the experience. I have yet to pack the DVD’s the books, the food, the toys, the crayons, the hats, mitts, ski pants…and of course there are my books and computer because I don’t ski anymore (knee injury). I’ll work out, go cross-country skiing and snowshoeing. One does need a lot of STUFF for a March Break ski trip.

Adam will wear skis for the first time on Monday. I’ve enrolled him in the Adaptive Ski Program. In the afternoon, we will mush with the dogs on our first dogsledding escapade. Of course, I do not know, nor can really predict how Adam will take to all of this. I suspect he will cry when ski boots are placed upon his feet – he won’t understand why they will move, or barely, like lead. He will hate wearing the helmet and will scream (he hates putting anything on his head or near is ears). I will hold it on and say “you have to wear this,” sweetly, lovingly, as I break out in a sweat, hoping for him to calm himself. I will watch him crying, becoming scarred going down the hill, the lovely people helping him – they will be dear, I suspect. Adam will get the hang of it, he will enjoy the movement, the feeling of gravity moving down the hill. The movements will be repeated and he will become a little more at ease every time.

To further prepare, I will take him to the ski shop tomorrow. We’ll try on boots, look at skis and then talk about it some more at home with pictures. While this may make the equipment look a little familiar, it will be the experience that will make the lasting impressions.

I remember my first trip away from home with my parents. I was as old as Adam is now. It was to Ottawa. The trip was made by car, and to me it felt like a very significant journey, with stops and a night over in Kingston. When we reached our destination, we visited the Parliament Buildings. I still have a picture of myself, standing against my father at the Eternal Flame, in my little green dress with a newly bought pair of sunglasses to match and fancy white shoes. I marveled at those sunglasses, those rose-coloured lenses, and consider the memories that Adam will cherish forever from this trip, suitcases, DVD, Pringles and all. I will be looking through Adam’s lense and savour the unexpected joys of being his mom. I may still bring the bikini (there is a swimming pool), even if it comes with the rest of the baggage.

Thursday, March 09, 2006


There Are No Prodigies in Art

There are no prodigies in art -- Pablo Picasso

There is no art without the artist. For Jonathan Lerman [see gallery statement and video footage in my sidebar], as Lyle Rexer alludes, the self and the compulsion, not the subject or the talent, makes the art. Taking this view, as Picasso did -- "art came through the accumlation of experience, which kneads the unconscious and constantly reshapes it, thus making the prodigy self-less, the victim of whatever subject seizes him, victim of his own aptitude" -- gives Jonathan's savant label a different meaning. If we take the view that art is part of him and his universe, the method by which he has come to express himself, then Jonathan is really, different and at the same time, like the rest of us.

I took a trip to Vestal, New York this morning to meet with Jonathan's parents and to look at more work by him. I brought back with me some of the colour charcoal drawings this time, some completed when he was as young as twelve years of age (he is now eighteen). For Jonathan, charcoal is a native tongue. It is more acute for me after I viewed his oil paintings -- a lot more contrived (apparently he has an art teacher now, so this may be part of the reason). His sculptures are interesting and look like folk art. Yet his drawings sing. For a young man who has great difficulty communicating verbally, his line is lucid, sparse at times, but speak volumes. It is a sophisticated language, this, as verbal language is hard pressed to describe multiple states in a single word.

In some of his later pieces, I am struck by the numerous faces [not pictured here] that surround some of Jonathan's favourite rock musicians, or renderings of rock personae unknown. Caren, his mother, states that she suspects Jonathan is suffering from temporal lobe seizures which may be resulting in some aggressive behaviour, and visual hallucinations. Caren notes that he sees different faces, sticking out tongues, heads floating in air. Jonathan "wants them [the hallucinations] to go away," she says, and looks forward to the day when someone can help him.

It is apparent to me, that these drawings are Jonathan's world -- a definition of himself within it, and affirmation of "I" in the universe, as well as a continuing investigation of it -- as he sees it and as it comes to him. Alan, Jonathan's dad, said to me today that he is interested in doing "something real," meaning, Alan thinks, that he wants to continue to do portraiture.

Jonathan is also interested in religion, and often asks other people "if they are Jewish," says Alan. He is also aware of ethnic origin and draws people of different races and makes up endearing names for his made-up characters.

The Jewish Shaw Posted by Picasa

Untitled, Jonathan Lerman Posted by Picasa

Untitled, Jonathan Lerman Posted by Picasa

I will continue this investigation of art and autism, talent and savantism as I continue to head towards the "really big show" in October. Indeed, the tendency to classify all persons within and without of autism, seems to be the tether we can't do without.