Reasons, Rationale and Representation

Yesterday, I attended a function for the arts. Not a minute too soon, either. When the well runs a little dry, one has to replenish. For me, its art and literature that inspires.

A few parents discuss how they do not write about their child, or reveal anything about their own autism, their past. This is utterly fine -- not everyone is comfortable in revealing truths about themselves, their relationships, their families and all that complicated stuff that goes with it. Some autistic individuals fear that information will be used against them, and already so susceptible to scrutiny and hate, I don't blame them. It's really a personal choice about how much one person can take. "Exposure anxiety," is an issue when raising awareness about autism -- while Autism Speaks may have huge walks and people come together, it is much more difficult to physically coordinate an event of solidarity among autistic people and their supporters, for many of these reasons. That is why we must work together to find solutions of accessibility. Online solidarity has certainly changed the face of civil action and we have to keep working.

I have deliberated over Adam's privacy issues over and over again. I try to be careful in how I express myself in order to keep his dignity in mind, but I also try to communicate that we too have our challenges. I never know when I may change my mind about how I write here or elsewhere. Yet, for now, I always come up with the same conclusion: Adam makes me so proud. Adam is autistic. Adam shows me (and hopefully others) that being autistic is really no big deal -- that despite the fact that he needs a little extra assistance here and there, he really is a great kid, with so many possibilities. We owe him, and others, the accomodations that he needs so that he may have a chance. We would ask no less for any other child.

After listening to the concerns of parents with older autistic kids on the Revolution Health conference call, in person and on many of your blogs, I am excited about the future. Here in Canada, we have college courses that are adapted for many disabled individuals. Organizations like D.A.N.I, won't take NO for an answer and are working towards creating employment opportunities for many autistic and other disabled individuals. Overall, the pulse is changing. I find that more and more people are open to accepting autism and including autistic people. I believe that the increase of autism diagnosis is steering us towards an inclusive society, more than any other time in our history. Do I believe this because my attention is focussed on autism? Perhaps. But have you seen many people diagnosed with mental retardation these days? I see more and more kids being diagnosed with autism and parents who want their children to be a part of society. That is the engine I'm talking about here. It should not be an urealistic expection of making autistic kids, "normal," per se, but rather, helping autistic kids to achieve their potential. Let us never underestimate that!

Many people who have never understood autism are reading fiction about autism. While those of us who are involved in autism everyday have many criticisms about how autism is represented, must remember that some novels have begun to change (for better or worse) some naive public perceptions -- many people who read this stuff come up to me and reveal "I never knew that people with autism are intelligent," for instance. This mainly from books like The Curious Incident of the Dog in The Night-Time and The Speed of Dark. Now I could scoff at the fact that others think that autistic individuals are "less than human," "not that intelligent," or come to terms with the fact that this is the first step in changing a perception -- so many people are never exposed to people with disabilities because we are not yet a fully integrated society. There are many hurdles to overcome in autism perception and representation, and our collective diligence in demanding more and better will only help to continue to shape this perception in a positive way.

Ralph Savarese's book Reasonable People is another example of a parent who has embarked with his child, D.J. in changing public perceptions. They have opened their lives, their challenges, and their family so that the rest of us may learn. This is why we share, write, create. This is why art is so important to humanity. Reasonable People is now finally available for purchase.

So, at the end of the day, Adam is my pride and joy. He is autistic. When I tell people he is autistic and their faces drop because they don't know anything, or don't know what to say, I talk about how terrific he is. I smile -- because he really does make me smile everytime I think of him. I remember a time when I knew nothing about autism. I never rubbed shoulders with a disabled individual in my school. Thanks to Adam, I've had to learn and the world has opened up for us. I can also tell you, smiles are contagious and open up the world for others as well.

Last night, I saw this dance troupe (Complexions Inc.)and two of the dancers from NYC came to our home. One of the dancers moved his body like I've never seen. I want to call him "rubber man." But his performance was more beautiful than that. It was as if his body was carving space -- I could see the archs of light that followed the movement of his arms and legs. Just like many shows I've seen, I think -- wow, Adam would love this. Many autistic individuals would love these performances. So, I'm going to start writing letters to the Toronto Symphony Orchestra, theatre troupes and dance companies to have special days where autistics can come, enjoy, whoop and flap. I'm calling it PLEASE DO DISTURB. Since I know from first-hand experience that art can change lives, I feel so strongly that Adam should have access to many performances in his life -- it inspires, enhances, and helps us create our own performance, this art form called life.

When What Seems Broken Is Perfect

WHEN WHAT SEEMS BROKEN IS PERFECT is a guest post by Barb Farlow. I got to know Barb after I wrote a letter which was published in The Globe and Mail on "prevention." The article was written in February 2007 and titled: "Expand Prenatal Gene Tests, MDs Urge."

Barb called me to discuss her daughter who was diagnosed with Trisomy 13. Barb is a professional engineer and mother of five children at home. She is married "to the greatest guy in the world." After an incredible amount of effort and a lot of help from ethicists, health care providers and patient safety advocates in Canada and the US, she was able to obtain change at a presitgous hospital here in Toronto. The hospital invited them to tell the story of their daughter -- Annie --to the Grand Rounds to which she says "we are certain that it will have a positive effect for the care for all special children." Annie's story will also be told at medical schools, a genetics and ethics conference in Calgary and an International Ethics Conference.

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The graph is still taped to the inside of my kitchen cupboard, pencil on a string dangling down beside it. It depicts the progression of my newborn daughter’s weight, most days showing a moderate increase and thus reflects a thriving child. It ends abruptly at 80 days.

How can the value and purpose of a life be determined? Can these be measured by longevity, intelligence or the productive contribution of an individual to the economic base of society? Even more important, who has the right or ability to make this judgment?

My husband and I were recently faced with a very difficult situation. We are in our 40’s, educated and financially stable. We have 5 children at home and we love sports and travel. The kids do well at school, are athletic, and all are healthy as horses. Life was good to us. We were pleasantly surprised when we discovered that we were expecting a new life to love and nurture.

We first heard of our unborn daughter’s genetic condition long before she was diagnosed. It was considered a lethal condition, an extra 13th chromosome. Most babies don’t make it to birth and those that do live a few years and are severely disabled. I thought, “Well, what is the point of that life?”

When the geneticist uttered the dreaded words, “your daughter has trisomy 13” and it was a diagnosis about my baby and not someone else’s, the reality was entirely different. With the ferocity of a lioness, I wanted to love and protect this little girl, and do all that I could for her. If her existence was only to be a few more months of kicks and flutters in utero, then I wanted her to have that life for the sake of both of us. We named her Annie.

After the diagnosis, the research began. It was frantic, and went long into the night for months. We researched medical details and personal stories. We communicated with parents all over the world who had a child with this very rare condition. We discovered that the babies can live longer, but they may need a lot of medical treatment. The most amazing discovery was that the parents continually stated that they treasured and delighted in every day of their child’s life. They knew with certainty, that the gift of that life was not theirs to keep. The children, called “survivors” were blissfully happy and progressed developmentally, albeit slowly. It became increasing clear to us, that unless the medical intervention to provide life was excessive, Annie was better off alive than dead.

We were not sure how we could do it. I was the kind of mom who usually forgot to pack a diaper bag. I would often be impatient when one of my children couldn’t master the math skills in their homework. Could I ever develop the patience for a child who may not be able to sit on her own for a year? How could we fit Annie’s care and needs into our busy schedule? We had 5 soccer teams in the summer! We were more frightened than we had ever had been in our lives. Love for Annie compelled us forward.

Annie was born full term, crying. She was mildly afflicted, as the syndrome goes. She needed a very small amount of oxygen and had hypoglycemia. Annie could not take all of her nutrition orally and so she had an NG tube (nasal gastric tube), which was a tube that went in through her nose down into her stomach. I became skilled at its reinsertion, every 3 days. We fed her expressed breast milk. Somehow, we dealt with all of the issues. We knew that with time, Annie would take more feedings orally and her need for oxygen would lessen, and likely be eliminated completely.

We were aware that the first year would be rough. Everyone pitched in. Our 12 year old son took over the lawn maintenance and his older sisters took on Annie’s developmental progress and bought “mind stimulating” music and ordered her a “Bumbo seat” to help develop strength.

The whole family came together in ways that I never dreamed possible. We discovered how true our friends and family were by their support and encouragement. Somehow, the homework got done and the gang made it to their soccer games.

At age 75 days, Annie smiled at us for the first time. Even now, a year later, the memory of that first and only smile causes me to cry.

Annie experienced respiratory distress at age 80 days and was transferred by ambulance to the Children’s hospital. The physicians told us she had pneumonia. Our beloved baby died less than 24 hours later.

There are two ironies to this story.

The first is that we thought we had a choice of life for Annie but the reality is that we did not. The medical records, which we instinctively felt compelled to obtain and have had reviewed, reveal no signs of pneumonia. An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.

The hospital issued a letter of apology stating that sometimes “communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry.” Recent developments in medical science can be used to diagnose and terminate certain lives but the choice to use medicine to prolong these lives doesn’t seem to be an option.

During her 80 days, our little Annie taught us our greatest lessons in life. Through her life, we experience the deepest sorrow and the most intense love. She taught us the true meaning and purpose of life and we are forever changed as a family. Our children have learned that if they are ever in need, their family will love them, protect them and do anything to support them just like we did for Annie. They developed an incredible empathy for the disabled and the vulnerable.

The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all.

Revolution Health Conference Call

I participated in absentia in this. Unfortunately I had another function but here it is for the rest of you to listen: Revolution Health.

Thanks to Dr. Michael Weiss, a developmental psycologist in Connecticut; Dr. Robin Chernoff, a pediatric developmental specialist in Maryland; blogger Autism Diva; Kathleen Seidel of Neurodiversity; and Jan B of Just a Mom, That’s More Than Enough and Madeline McEwen-Asker of Whitterer on Autism and Kristina Chew of Autism Vox. What a great way to pull people and this dialogue together. Special thanks to Cynthia Samuels for bringing everyone together.

Joy Is Not An Outcome

“We grow up believing that what counts most in our lives is that which will occur in the future.” Mihaly Csikszentmihalyi, Author of Flow.

“I never think of the future. It comes soon enough.” Albert Einstein

“Worry never robs tomorrow of its sorrow, it only saps today of its joy.” Leo Buscaglia

“Our future is not predictable. Our future is the result of the choices we made.” Garth Brooks


In the “autism debates,” how much of this is true – that the crux of what we seek lies in a desired outcome? Whatever therapy that is debated to be “right” for autistic children, this is the foundation upon which it has been built – that the outcome should be that the child should function, should be as normal as possible, should live as much of an independent life as possible. It seems that we are so focused on these outcomes, that we’ve forgotten about today. For me, I know that there are hard days. Frustrated days. Even worrisome days – worry is about tomorrow, about an expectation, about a desired outcome. For me, my frustration gets directed outwards on a society that doesn’t seem to understand autism, doesn’t know how to accept Adam fully as he is.

I forcibly took some time away from all of this. I recommend it for everyone – to live your life, go out (find that babysitter if you must), and do something you enjoy. Moving out of autism, you begin to realize what quality of life really means: it’s not living for tomorrow but for today. It’s enjoying your life and your child. It’s about creating your life and your reality. It’s not that you give up educating or on your child. It’s just that you don’t worry so much. How many times are we really putting our children under an impossible magnification? It seems that once your child is diagnosed autistic, the bar is raised higher for our kids than for others. Every tantrum, every bit of anxiety all goes scrutinized as the “fault” of autism. It’s simply ridiculous. No one can live a life like that without snapping.

There are many people coming and going and we’ve been doing a multi-disciplinary “therapy” (I prefer to call it tutoring or education or just one to one assistance) for three and a half years now. For all these years, all we’ve been focused on Adam’s “progression.” Reading all of your blogs, I would say we’re all pretty much focused on that. One assumes that progression must lead to someplace – a fantasy of a child who talks, who goes to school, maybe even university. In the meantime, we if think about the worst-case scenario (that our child will never become anything), our bodies are in constant fight or flight mode, a state of panic for what does not yet exist, and we’ve come to learn that being in “fight” mode all of the time is a contributer to chronic stress – we are putting our bodies in the thing that we are actually thinking about. Perhaps we’ve even attached our sense of self to these particular outcomes, or attached ourselves to a habitual way of thinking and “treating” autism.

Think of an elastic band for a moment. You’ve got that band in your hand and are pushing and pulling it back and forth. What do you notice about the rubber band? It seems malleable and it moves back and forth – we are pushing and pulling the band to get that motion. Then what? If we pull to hard, the band may break, or worse, the band may hit someone else and hurt them. But where does this rubber band go? While it is moving constantly through our push and pull motion, it still ends up going nowhere. So although I’ve used the word struggle many times, and felt like talking, dealing, and confronting autism can be a “struggle,” a constant push-pull action that seems to be going nowhere, I would now like to change that word to STRIVE. What happens when we strive? We begin to move forward with what is.

We have come to believe that a struggle is noble. We believe that if we don’t struggle, then the undertaking is unimportant. I think I’ve had it wrong. Struggle is not what I want. I just want to move forward with what is. I want some flow. I want to spend more time with my son, who has just turned five and whose life is traveling at a speed that I never could have imagined. While we must strike a balance between teaching and living, we must always remember that our children are only children for a very short time. We need to cherish the moments.

In Flourishing, edited by psychologists Corey Keyes and Jonathan Haidt from Emory University and the University of Virginia respectively, Martine E.P. Seligman of the University of Pennsylvania writes in the chapter titled “The Past and Future of Positive Psychology.” I found the following quote very revealing:

“Prevention was a theme of the 1998 meeting in San Fransisco. We asked how we can prevent problems such as depression, substance abuse, and schizophrenia in young people who are genetically vulnerable or who live in worlds that predispose them to these problems. We asked how we can prevent murderous school yard violence by children with access to weapons, with poor parental supervision, and with, perhaps, a mean streak. The answer does not lie in the disease model (Catalano, Berglund, Ryan, Lonczak & Hawkins).

What we have learned over 50 years is that the disease model does not move us closer to prevention of these serious problems. Indeed the major strides in prevention have resulted from a perspective focused on systematically building competency, not correcting weakness. Positive psychologists have discovered that human strengths act as buffers against mental illness (Keyes & Lopez, 2002.) Much of the task of prevention in the 21st century will be to continue this fruitful line of work and create a science of human strength, the mission of which will be to understand how to foster these virtues in young people. (Bornstein, Davidson, Keyes & Moore, in press).

By learning optimism, not out of naivete, “we do not repair damage, but instead teach skills.” Optimism also moves us forward. It is creative and empowering and keeps us in a productive mode.

It’s been an interesting week just thinking about where we are. I’ve had to think about how long we’ve been on this path and about the quality of our lives together and what I want that to feel like. I want more time with my little guy before he grows up. I want to teach him myself some days because I have the patience and love for him that no one else will ever have, and I do find those precious connections we share that enable him to learn. I do become frustrated some days. But it’s not because of Adam, it’s because I haven’t listened or don’t have the time to listen. It does take time. We have been so happy together this week, and he really wants to learn from me, his parent. Being with therapists all the time is no way to live. In the beginning, we were told we HAD to do therapy for 40 hours a week – we all pretty much hear that one. Our children are not happy exclusively with therapists. Our children need us.

There may never be a eureka moment in autism science. We may never know everything there is to know. As Isaac Asimov said “The most exciting phrase to hear in science, the one that heralds new discoveries, is not the ‘Eureka!’ (I found it!), but ‘hmm, that’s funny.’” In other words, we may learn not what we seek, but rather something entirely unexpected. So there is no sense in waiting for something that may never occur. It only makes sense to continue with what we have right in front of us, and what that asks of us.

“Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world.

We should take care not to make the intellect our god; it has, of course, powerful muscles, but no personality.

We cannot solve problems by using the same kind of thinking we used when we created them.” --- Albert Einstein


Joy is not what Adam will become. My joy comes from living with him, from possibilities that I don’t invest in too heavily. Joy comes from being with Adam, and what he reveals to me every day.

Happy Birthday Adam

It is Adam's 5th birthday today. We had a little party on Saturday and the parties will continue -- in our house they are nice quiet parties.

I am so proud of my little guy. He woke up all smiles, still cooing the way he did years ago. He is trying so hard to talk, but it's not really coming yet. I'm looking at Dynavox and other systems -- he sure likes the lightwriter we are playing with right now.

Problem is, here in Toronto, there is a wait list to get these devices because many "therapists" don't think they work for people with autism. At costs of $6,500-$10,000 Canadian, the average family can not afford to buy them. Bloorview Macmillan here in Toronto can "prescribe" them as they are the government's designated "prescriber." Yet, who can afford to wait two years, let alone swallow that price tag?!

Adam needs devices, computer programs and more. He needs these things to be subsidized and accepted in the classrooms. We need to press our government officials and make them understand what accomodation means.




Today, on his 5th birthday, I do not mourn the child I do not have, I celebrate the Adam I do have, to whom I responsible, and to whom I owe a great amount of fortitude and joy. His life is full of possibilities, and he will never disappoint me.

Endgame

My recent viewing of LUCY – a play at CANSTAGE at the Berkeley Street Theatre in Toronto inspired some real feelings with regards to how our lives are viewed by others. LUCY is not alone at fault for raising arms-length fascinations of autism – movies like Rainman, and others that deal with peripheral views of disability as opposed to films like The Sound and the Fury and My Flesh and Blood which deal with in-your-face, real issues confronting those with dis-abilities. Autism Speaks and their recent parading of autism as horrible fate-worse-than-death scenarios on Larry King and Oprah don’t help. Oh but wait, “my life is better because of my autistic child” recent statements by the advocates who earlier stated how terrible their children were, is making the issues confusing (quite frankly I see no point in being politically correct when you are trying to beat the autism out of the child rather than dealing with the issues and enjoying the child you have). All of it effects our lives deeply:

We go into a store and two women who watch Adam hop to a row of books at the bookstore feel it is their right to stare at him and say “autism,” like we can’t hear them. Friends (with all the right “intentions) feel it’s okay to call out of the blue to proclaim they saw Michael Waldman proclaim that television causes autism, so gosh, it must be true and I better do something quick because I must be a bad mother for plopping my son in front of the telly (like by golly, that’s all we do all day). People feel it is okay to watch every single move Adam makes and talk about autism in front of him, rather than engaging with him. I do consider the media and representations of autism very much a contributor to the way we treat and regard autistic individuals.

There is a real difference between people calling asking “what do you think about such and such,” and authentically trying to understand. But it’s not fair to stare or to assume that all we want to do is talk about autism all day long. We don’t. I may say I don’t feel like talking about it. We don’t feel like being stared at all the time. All Adam and I want is to walk out into the world and to live our lives freely. We want to work, to go to school and live as we want and are able. While one might argue that all the fuss is raising awareness about autism, and arguably, make us able to accommodate autism better, we must also be aware of the dangers are in making people “fascinating” like “pathologies” for our consumption or entertainment, rather than really getting to know us. There are days that I feel like the political chess game called autism is becoming quite boring, and yet ironically dangerous for us not to participate in. It may be a game without conclusion and yet, a game Adam can’t afford to lose.

A Review of LUCY

At CanStage in Toronto is the play LUCY, written by Damien Atkins who, in consultation with Autism Speaks, The Geneva Centre and the University of Toronto’s Department of Anthropology, starring Philppa Domiville as Julia, Tony Munch as Gavin (Lucy’s father), Seana McKenna as Vivian (Lucy’s mother), and Brendan Murray as therapist and head of Lucy’s school, and last but not least, Meg Roe as Lucy.




Named after the well-known fossil known as Lucy, she is one of the oldest and best-preserved skeletons of a hominid (two-footed, humanlike primate). Lucy was of the species Australopithecus afarensis. Her remains were found in Hadar, Ethiopia, in 1974 by American anthropologist Donald Johanson and his student, Tom Gray. During her life, Lucy stood about 3.5 feet tall and weighed close to 65 pounds. The shape of her leg bones, pelvis, and spine indicate that she walked upright. She is estimated to have been between 25 and 30 years old when she died of an unknown cause. Compared with humans, Lucy had a small skull, long arms, and short legs.

It’s interesting to hear a play begin with Lucy, an autistic thirteen-year-old talking, reflecting about the mother she peers on from above. When the spotlight shines on Lucy, she is lucid and not autistic at all, perhaps intended to suggest an ability to self-reflect, to think. The play begins with Gavin, Lucy’ s father divorced from Vivian, her mother, to request that Vivian, an anthropologist, take Lucy for one year so he can connect with his new bride. “I’m exhausted,” he proclaims. “I didn’t think I could have life again.” Vivian, who left Lucy as a baby, eerily reminiscent of refrigerator mother theory, reluctantly usurps her traveling life to welcome this “stranger” into her home. Gavin arrives, schedules in hand. Lucy repeatedly rings the doorbell and once inside, settles into drawing on the floor. “She needs a lot of structure,” says Gavin, telling Vivian to do the same things, buy the same things lest Lucy devolve into a set of tantrums. Lucy also gets accepted into a new autism school after being on a wait list for three years and, “where they can do a lot for her,” he says.

Vivian gets acquainted with her daughter – Lucy turns on the television and takes off her pants. “Put your pants on,” says Vivian, “put them on or no TV.” A battle of wills ensues, Lucy retreats to the bathroom, we hear a few bangs, and comes out with feces on her hands.

“Did you do anything out of her schedule?” asks the brilliant therapist.

“I told her that if she didn’t put on her pants there would be no TV.”

“Her pants are made of corduroy,” he says, “it’s called sensory integration dysfunction. Her pants were painful to her and she was communicating to you that she didn’t want to wear them.”

Is this sounding like an autism 101 class yet? The first act certainly felt that way. Anyone living with an autistic person may have been cringing during this first part of the play. In fact, writer Atkins obviously was so fascinated with all the theories in autism that he had to get them all in there as quickly as possible to the point that the true meat and potatoes of the play – the idea that autism is a form of human evolution – a way for humans to survive in this over-populated, closely knit world – was not really explored. The play chugs along making quick stops at all the autism theories we hear about in the news today. We witness the devoted but exhausted father who “does everything” for his child by enrolling Lucy in endless therapies. We learn that Vivian is “autistic” as she prefers digging fossils in Africa over engaging in social repartee. The play shows Lucy overwhelmed by the therapists in and out of her life with an interesting auditory and visual montage of the voices in her life – of “do this, do that” and “use your words,” echoing painfully in her head.

Vivian becomes the mother obsessed with vaccines and mercury theory – unable to view herself as the genetic material that made up Lucy -- and moves all to quickly to an accepting mother, appreciating the gifts of her daughter. They become the coup d’etat against the outside world of theory and intervention. They bond, they read books together, and Lucy is allowed to express herself in her art. Vivian cuts off all therapy and decides to move to Africa with her daughter to finish her book, and let Lucy be herself. “Don’t you see?” Vivian says to Julia, her assistant. “We are not meant to live this way.” She begins to talk about how civilization is wrapped up in doom and gloom, how people use technology more and more in order NOT to socialize and engage in confrontation. Her theory, based on survival of the fittest, is not that autism is an aberration, but rather, that autistics ARE the future. To Vivian, autistic people are a genetic evolution of human survival – humans that are more pragmatic, who prefer to be alone, who do not get wrapped up in emotional webs that are not working. Contrary to disability, Vivian views Lucy as perfect. “No one will stand with you on this,” says her assistant, Julia.

In an interview in NOW magazine, director Atkins says, "I guess the point of the play is the validity of putting people in categories, boxes that distance you from others and don't allow for real understanding or compassion."

"I feel strongly that Lucy's not aware of her difficulties," says Meg Roe, who plays the young autistic woman. "For that reason I didn't want to know too much about the clinical aspects of autism but rather to draw on behaviours that came from me, from how I am in the world. Creating Lucy was more a matter of exacerbating my own habits, bringing out my own traits in a more intense way. In earlier versions of the script, Lucy screamed a lot; now she's finding different ways to communicate."

I was actually interested that Roe did not talk to autistic individuals before rendering the traits of an autistic young woman. She said in a Canadian television interview that she didn’t want any one autistic person to shape her character. It shows. While Roe may have exacerbated her own traits, she doesn’t quite pull autism off.

"It's hard to know whether what I'm doing is working, because I can't see how I'm affecting the other actors," she notes. "Lucy rarely looks at the others and makes little eye contact. I just have to trust that Damien's text, director Eda Holmes and my own instincts will lead me in the right direction."

The instincts are off. The play is nothing more than a string of stereotypes glued together -- a collage of autism politics and theory.

Where is this all going? The play doesn’t give us a greater insight into the autistic experience than we can already derive from autistic art, or books and experience written by autistic people. It is a difficult task, this attempt of trying to relay autism theory against an interpretation of autistic experience. We get the sense too, as Atkins ties up the play in haste. In the end, the therapists and the ex-husband come to take Lucy back to her therapy, because “she needs to get better.” The mother doesn’t fight for her, but says to Lucy “I’m sorry.” There was a point when Lucy is on the floor reacting to all the dissension, the yelling between Vivian’s assistant who inappropriately intervenes with the ex husband and the therapist. When Julia said “this isn’t survival,” as Lucy wreathes upon the floor I wanted to say “oh yeah?” With the suggestion that the government wishes to employ a National Autism Surveillance Strategy in Canada, the idea of intervention and the invasion upon others telling our family and autistics how to live their lives feels all too real. So I felt her wreathing is survival. It is communication.


I can’t help thinking as I write this of Munch’s The Scream: shut up and leave us alone already. The rest of live the consequences of theories and speculations and interventions every day. We get calls every time some quack wishes to publicize their latest theory, or gasp with excitement when autism is on someone’s famous television show again. What people don’t know is that this is life as we know it. Stop peering at us and let us live it.

While the play wishes to suggest many things, namely how we relate to one another, there are too many themes and director Atkins bites off more than he can chew. He may leave our heads swirling, but eventually we don’t end up in any place different than where we already are – except that maybe we’ll receive yet one more telephone call: did you see Lucy lately?

Sensitivity Begins At Home

Just like in The Music Man, March came in like a lion. April approaches with trepidation, as snow has fallen on what should be the early days of tulips and daffodils.

The year has begun with challenges. Mother’s health, my knee surgery, anxiety and I wonder how it all effects my little guy, who is so attune to the environment and moods around him. I can’t say that my own immune system isn’t effected when the house in under duress. I too, like Adam, am very much effected by moods, and environment. I consider at times that the best remedy is to go escape to the country and get the heck out of the punitive demands of the city. There is something of a pulse here in Toronto – programs to run to, schedules to adhere to, and obligations to attend to. It is endemic to the way we are supposed to live here in the city, I suppose. I don’t always like the way we are forced to live, and I don’t think it’s all that healthy for Adam who is so touched by all the stress. The world stops for no one, as they say.

The other factor is our doom and gloom society – be it through terror and “war on whatever” campaigns – it is exhausting. There is very little happiness in society these days, which makes it all the more important that we focus on creating it. Forget about the doom and gloom campaigns that are intended to scare you and get you to act and throw money. Create a world that you want to live in by starting at home. When I become overwhelmed, I just try to remember what is important and focus on that. I wonder how important these primary years are – those milestones as it were – to Adam’s life. I wonder about just learning, being happy, experiencing and living life.

I have four step-children in addition to Adam. Two are out of town at university now. One of my step-sons came to me yesterday and asked for my advice. He rarely does this, so I took it very seriously. He said at Kings College in Halifax, his psychology professor told them of various therapies for autistic people and that ABA was “necessary.” Joe, my step-son, asked why Adam wasn’t “better yet,” with all the programs he has at home. I would like to meet that professor who gave Joe the idea that Adam should “get better,” as opposed to simply learning the best way he can. So I went into my spiel about helping Adam to learn and be the best he can be. I don’t know if Joe understood this yet – he was the one son that went to an all boys school that demands that you “be someone,” – that successful doctor, lawyer or business man. Joe went on to describe how he had an Aspergers boy at his camp where Joe was his counselor. The boy had “behavioural” problems, Joe said, and “was not allowed to return to camp.” “We judged him as we would have anyone without a disability,” he said, but he said it as if he were questioning himself, and trying to understand.

It is here that I find that people have the wrong idea about inclusion – as if it takes no extra effort or training, and that the onus is on the person with the disability to “fit in,” as was clearly the case at this camp. It is clear that no matter how “nice” people are, that if they don’t understand autism and don’t have the toolbox, so to speak, they can do little for the autistic individual. Inclusion isn’t just including, it is learning HOW to include, to listen, to accommodate and to understand. An autistic person cannot be included without such understanding and provision, whatever that provision may be because it may be different for each autistic individual.

So now the camp loses, the Asperger’s teen loses. He is not allowed to come back on the basis that he does not fit in among the group of “nice” people. I asked Joe to consider when that may happen to our dear little Adam.

The Autism Acceptance Project

On google, you are finding the old home page. The Autism Acceptance Project has a new website and forum.

Brian Henson's Response to Senate Committee Report

I have provided my blog to The Autism Acceptance Project's autistic board members to comment on the recent Senate Committee Report: Pay Now or Pay Later: Autism Families in Crisis. Below is Brian Henson's response to the report first. The second half is his comment on why The Autism Acceptance Project did not participate, nor was invited, to these hearings. We are working on doing so in the future:

One of the centre comments of the Senate Committee on Autism in its report "Pay Now or Pay Later" is the following statement (from Item H, in Part III: Action Needed by the Federal Government):

"...the [Senate] Committee supports the symposium announced by the government and recommends that: Health Canada invite autistic individuals to attend the symposium and be given the opportunity to contribute as equal partners in an exchange with other participants and Health Canada ensure that the symposium is conducted with a clear set of goals and defined outcomes and is based on consensus building."

This statement is, albeit, a first step, but the requirements (or conditions of inclusion) of the symposium, as outlined above, are just not precise enough. What is the definition of "equal" in the first recommendation? Would anyone care to say that it could mean equal representation for each participant in the symposium for those who are autistic individuals and those who are not? This is highly unlikely, given the per-capita rate of autism today and the number of non-autistic persons and organizations wanting to be represented at such a symposium.

Also, there is no mention in the statement that autistic individuals be represented "as equal partners" in any future symposium orchestrated by the federal government (or a branch of the government, including a crown corporation). This leaves the statement of equal partnership as just an olive branch to get autistic individuals to feel as though they are having some say in the development of governmental resources, when the case might be just the opposite--they might be used just as "pawns" to show how autism needs to be treated, because the individuals, themselves, do not "behave" as a "normal" person would behave, and anything these autistic individuals, regardless of the number, had to say at such a symposium, would "go in one ear and out the other", as far as parents, professionals, and government policy makers.

In the second part of the statement, it mentions "a clear set of goals and defined outcomes", but does not indicate (except by "consensus building") what these goals are oriented towards. Also, what is consensus building? Is it just taking what the majority of people at such a symposium want, and ignoring what the minority are saying? If, for every hundred non-autistic persons at such an event, there was just one autistic individual, how would one establish both the concept of equal partnership with autistic individuals, while, at the same time, building consensus?

These issues are not new, as far as symposiums (and the myriad of other forms of human interaction), but still require a better outline, available to the public, before the symposium itself, on how these issues are going to be handled at such a symposium or conference. That way, each person participating in such a conference, whether as an individual, or a representative of an organization, will understand what to expect beforehand, and prepare accordingly. For example, will there be provision at such a symposium for persons who used other means of communication (such as facilitated communication) to be able to present their views and priorities on autism? Will written briefs sent by those not present be considered just as important as the presentations by those attending the symposium? Will it be open just to persons in Canada, or will persons (professional or otherwise) from outside Canada be able to attend and present at the symposium? Will issues affecting human rights, aboriginal issues, and other issues, beyond autism (medical or otherwise) be open or restricted at such a symposium? These are just a few of the questions that need to be answered in outline form, open to the public, before any such symposium is ever scheduled. Without such issues being addressed ahead of time, there will just be more confusion and conflict wrought out of such a symposium.

Of course, if the outline of the symposium, itself, is far too restrictive, in any way, there might be more protests than input at such a symposium. Therefore, those preparing for such an outline of the forthcoming symposium need the assistance of various persons experienced in the principles of negotiation, and how to avoid conflict (and confusion), in yet another attempt at human interaction as a basis for policy making at the government level.

This is Brian Henson's response as to why The Autism Acceptance Project has not yet participated in such hearings:

The question seems to arise, as to TAAP not being involved in the recent Senate Committee Hearings.

That question is whether inclusion can be demanded or built. It seems to be a question of time. Those who see it as a demand (and without such a demand, no inclusion can be conceived) are ready to point a finger at anyone who does not demand inclusion (as they do, at that moment). However, those who see inclusion as something built in the form of diplomatic initiatives, see it as a test of solid but persevering patience.

If one is ready to confront those who are against inclusion, then the diplomatic moves will flow; but if one is not ready for such a confrontation, then the demands will be seen as purely rhetorical, and of no subsistence.

TAAP, at the time of the Senate Committee Hearings, was not ready, due to various factors, none of which was apathetic in nature; and these factors, including the fact that TAAP was not invited to participate in these hearings, must be taken into account. To suggest, in any way, that because TAAP did not participate in the Senate Committee Hearings it was being supportive of those organizations who deride autistic
individuals in any way (because such organizations were present and forceful at the Hearings) is just not applicable.

If you do not defend a neighbour at every moment does not indicate, however slightly, that you are spreading hatred towards that neighbour. Perhaps you were just not there, at that moment, when the neighbour needed defending, or were limited as to the type of defence you could enable.

Like a hockey team player who has less energy than a week ago, and slips once or twice during a game where that player's team is defeated, it is not the onus on that player to prove that he was the one who lost the game (due to that player's decreased energy); there were just too many mitigating circumstances as to why the team lost. However, and this is important beyond the score: the team cannot be self-reproaching over one loss; it must move on to the next game, whether that game is tomorrow or next year.

Likewise, it is not a matter of portraying TAAP as being at fault for not attending the Senate Committee Hearings, and causing those opposed to inclusion to be seen as the victors at the Hearings. There will be more chances ahead for TAAP to be included, and often when the slower approach is taken towards political issues, the stronger the basis will be over time. When solid connections are made, however long that might take, the bonding is far more permanent, and the results go far deeper than just one set of hearings or one symposium. These results will be a much stronger stand in support of inclusion of autistic individuals in their own needs and support systems,whether by private interests or governmental interventions.

Therefore, TAAP has pursued the role of bringing autism awareness to the public not by trying to portray itself as a front runner, ready to persuade by popularity, but by trying to portray itself as the group with the most solid foundation as a basis of its stand that autistic individuals, themselves, must be full party to any discourse about the needs and supports of each autistic individual. While other organizations, more bent on the current situations, will fall over time, due to a lack of a solid foundation, The Autism Acceptance Project will, with its solid foundation, withstand the pressures over time to withdraw or to decrease its stand on the full potential of autistic individuals.

Please note that these are individual comments made by TAAProject board members. Stay tuned for more comments from The Autism Acceptance Project board members, autistic and non autistic, alike. To reach Brian Henson, please email ryley@taaproject.com.