We Learn to Include By Including

This rendition of "Not a Puzzle," from our autistic board member of The Autism Acceptance Project, Brian Henson. It comes on the heals of many other renditions of autistics not viewing themselves as a "puzzle," as represented in so many charitable campaigns today.

Last night, Adam didn't sleep until 5 a.m. Once in a while we have the episodes. They seem to coincide with too much stimulation in the evenings, or if we forget and let him run and jump around. He sure is a happy little guy, so it wasn't a distressing evening. He simply didn't want to go to sleep. Believe me, we've had many of those nights in the past. About three years solid from the time he was born. I have to admit, I got to a point where I was so sleep deprived, I was in tears some days. Luckily, we moved beyond it and sleep soundly most nights, so this is now an exception.

While I was awake, I was thinking about Brian,Martine and Michael, our autistic board members (and we want to expand our autistic membership), and other members of the TAAProject advisory. Recently, we had a visioning meeting. It was wonderfully stimulating, as we discussed all the issues about autism these days. We have a forum where we can do that at TAAProject with the one goal to keep it positive and guided by our autistic members. Us "non autistics" have a lot of opinions about autism. Our board has clinicians on it, a lawyer who for us, represents "public perception" about autism, some parents and of course, autistic people. What I notice is that the autistic members are quiet. They let us non autistic people go on and they don't aggressively edge into the conversation -- largely because they can't and often because they won't. I often had to stop the conversation in order that they could "have the floor." Afterall, this is who we are doing it for, so we put the weight of our decisions there. It made me think how safe environments for autistic individuals to participate is steamrolled over by most of us. It made me consider when I began moderating comments on this blog when an autistic person from the US called us at TAAProject and said "thank you, I didn't feel safe to comment before."

Michael, Brian and Martine can come to meetings. Some autistic people cannot. Last year, when I considered putting on a panel discussion to debate the ethical issues with Wendy Roberts (a genetics researcher), heads of charities here in Canada, and other autistic people, the overwhelming consensus was that it would be difficult to process in that type of setting for the autistic members of the panel.

All of this has made me consider what it is we have to do at TAAProject to make it work so that autistic people CAN participate -- how do we provide access? How do we enable "panel discussions" to work be it through live feed, be it providing questions and have people write answers in advance of presentations? Afterall, Dr. Roberts and the like get the floor often enough, and autistic people do not. How do we make autistic people who currently feel unsafe, safe to discuss the important issues that face them every day? How do we honour certain sensitivities for individuals who want to participate, with light, noise and unrelenting stares? How do we use technology and forums to further allow autisitcs to particiapte world wide?

These are the considerations that will hopefully turn to action on our part. Asking autistic people what they need and observing how one can sucessfully accomodate, is the first step to inclusion.

"You learn to read by reading.
You learn to write by writing.
You learn to include by including" -- Paula Kluth

Animal In Translation

Our dog’s name is vagina. Oh my yes it’s true. We found out a couple of months ago while eating my in-laws place in Florida. They have a fellow who helps them out from the Philippines. He broke the whole roasted chicken with his hands before he cut it into pieces, his hands glistening with fat. My brother-in-law asked what we were going to name our new puppy.

“Kiki,” said Henry.

Holding his wet fingers in front of him so as not to get anything marked with the fat, Berardo, the man from the Philippines, could barely contain himself, not wanting to interrupt the family conversation.

My brother-in-law noticed.“What’s so funny,” he asked.

Berardo hesitated in between his giggles, not sure if he should say what was on his mind. We began to laugh with him, ignorant, but curious as to what was so funny.

“In my language, Kiki means vagina,” he giggled shyly.

Well that was plenty of fodder for my two brothers-in-law -- this perilous world of language, translations and meaning. It makes me wish I'd research the name a little more, 'cause now it is forever on my mind. But it doesn't change her -- the fact that she is still an innocent, beautiful dog.

“It would be like if you came to my country and called your dog, pussy,” Berardo elaborated.

Ah well. It’s still a cute name for a dog. But it gives a whole new meaning now when I say “Kiki come!”

Joy from John

The other evening, I managed to watch a few minutes of TV. I love the show The Actor's Studio when I can watch it. John Travolta was on the other night and this is what he has to say about joy and sorrow taken from a written interview following the show:

In 1992, on a trip to Maine with Preston and their infant son, Travolta had an inspiration. He wanted to write a story about a bright, sensitive young boy who loved airplanes and all the romance and dreams they symbolized. Through that little boy, Travolta wanted to express his own feelings about life and to share those feelings with the people he loved. The result was Propeller One-Way Night Coach, a delightful fable that was published in 1997 by Warner Books. The story, with drawings by Travolta, runs only 42 pages, but Travolta says it contains the essence of his philosophy of life:

Always focus on the positive. [bold mine] Never give in to negativity and darkness. Count your blessings, not your laments. [bold mine] Stay as warm and open and receptive as a child. Dare to go your own way, dare to be free. And in good times or bad, never be afraid to lead with your heart.

"In the little book, the kid really does that," says Travolta. "He looks sorrow right in the eye.[bold mine] He sees the front-page story of an airline crash and thinks, 'That must be awful. But I can't think about that now.' He doesn't ignore that, he acknowledges it, realizes it's awful, but in order to survive, he moves on to something that's going to get him through. [bold mine] I think I've done that my whole life. I've tried to make my life an ascent, as opposed to a descent. [bold mine] The character in the book is real, but he always looks on the bright side of life. [bold mine] He looks at the glass as half full.

"If we can't think of life as something potentially joyful, life isn't worth living. [bold mine] That's why when actors speak of wallowing in the darkness, I think there is enough darkness, there's enough tragedy. [bold mine] If you look around you, there's a war in Bosnia. There are people being murdered. There are enough crashes. There's man's inhumanity to man. There's abuses. It's all there, very evident. It's much more difficult to look at the brighter side of it. [bold mine] I would almost like to see people challenge young artists to look on the brighter side, rather than indulge in the evident. Because right there you've got all the darkness and sadness you'd ever want. At a moment's glance. So the real challenge in life is to look for ways to handle the upset--and to always look forward towards something to live for." * [bold mine]

Listening to this over and over again from philosophers, thinkers, and now from John gives a whole new meaning to the term applied to autistics like Adam -- when he jumps and flaps his hands -- "happy dance." (If you've never tried it, you should. It is quite liberating).

Acceptance, Appropriateness and The Whole Damn Thing

When I did that Podcast interview, I just found out that my mother had to go in for urgent surgery. She is recovering at home now and things look okay. I also work on a committee for the Jewish Board of Education here in Toronto (remember I am a convert, having gone through the public and the Catholic systems). This committee has a university course at York University to train willing teachers to work with all kinds of special needs children. We are also working to get more inclusion happening within the day school system here. When I said on Podcast that “at the end of the day, we do a lot of things for Adam,” we do. We, like many parents, have tried a few things at the beginning and continue to look at how we teach in addition to what we teach based on Adam’s needs: what issues are arising for him, what he is learning or needing to learn at school. I have never found a great “method” for Adam – a “one true thing.” I have found that for Adam, knowledge of as much as possible allows one to extract the best of the many approaches to autism out there. Adam is my guide. I have to work very hard (and I mean VERY hard), to find the right accommodations for him. Sometimes, I feel like a failure – that I am only human, have only so much time, and he needs me to work faster to find those accommodations. Other times, I know that as I plug away each day and study and learn more from autistic people, this is the best anyone can do.

As Adam approaches five, I feel we are at the edge of what we thought was going to be the end of “autism treatment.” When he was diagnosed early at eighteen months, other parents of autistic kids seemed envious, as if Adam had a higher chance of “recovering” from autism because of “early intervention.” Adam is hyperlexic. At nearly five, Adam cannot converse, although he can whiz through a computer learning program and has superior reading skills. So this is our scenario, in a very little nutshell. As Adam grows, his anxiety (the same anxiety he had on the day of his birth when he came into the world and did not sleep for thirty-six hours), still exists. But it is not all Adam. He is affable, extremely affectionate, charming, humorous, curious, active, and wants to be social even though this can be very tough to execute.

Our issues come from the anxiety and from other children who now can see that Adam is very different from them and who don't know HOW to interact with him, because this too needs to be taught to "typical" children. Last night, we went to our dear friends for Friday night dinner. They also have five children (I have four step-children and one of my own). Their children are all still young and live at home. The youngest, a girl, is Adam’s age. She is gregarious and LOUD. At least loud for a sensitive mom with an autistic son who feels his pain. I did not prepare Adam. He had a long day and when he entered everyone said “hi Adam,” with patience, but still overwhelming him. They love him. They have no intention to hurt him -- they were just being friendly in the "typical" way -- with "typical" language, which Amanda made note is invasive for an autistic person. Then, their HUGE dog approached, frightening Adam a little more. Adam cried and wouldn't let go of me. I tried to console him. He began to say “go!” and “away!” I took him upstairs to find an ABC book in a quiet room, but he still would not let go of me. He kept saying “away!” and I think he even said a sentence “I want to go!” The little girl came in the room, and because she is little and acts the way she should, still makes enough noise to frighten Adam. Henry came in, took him to the TV and Adam settled a bit. He made these throaty, quiet wails as he tried to settle himself.

As a parent who just arrived as a guest to our friend’s house, there are a few feelings I had. The first, because this doesn’t happen very often, but is certainly beginning to, I felt frustrated because everyone feels bad for Adam. They jump through hoops trying to be quiet so that he can settle down. I also feel bad for Adam, as he is clearly communicating with me that this is just too much for him -- he is saying with words “go,” and “away.” He is trying to get me to help him, while I try and persuade him to stay with potato chips and ABC books, none of which worked. So caught in between to worlds, I feel so terrible. Luckily, with television, Adam calmed down. When it approached eight-thirty, and he had to go to the bathroom but didn’t want to go in their bathroom (we have developed a little fright of bathrooms out of our house -- not autistic per se, but just a part of being a kid who has to get used to it). Henry had to take him home just down the street. When he got into his familiar surroundings, he was as happy as a "clam." (Are clams really happy?)

Perhaps it is this part of the autism disability that parents find difficult – having to do things because they are part of your lifestyle, and the other, because they are obligations. I didn’t make Adam sit at the dinner table, even though I wish he could sit beside me because I love him and want him there. I wanted him to feel good about being there – sometimes this needs a little more time. Why push him when he found his comfort zone for a couple of hours? I also know that with Adam, everything takes a little more time, a slightly different path. While our journey may be zigzagged, I can also say that Adam achieves more than I imagine some days – like tolerating a loud echoic gym to play Sportball on Saturdays. The instructor came to me and told me how proud of Adam he was – because in the beginning, Adam would cry as the noise was way too loud. Now, he has no problems with it and is so happy at Sportball. So, this is about hanging in. This is about developing a tougher skin as a parent when others do stare. But it is also about accepting the zigzag journey and discovering things you would have never otherwise discovered along the way.

Adam is a busy and pretty social guy especially in settings that he knows. He goes to OT, has SLP, and does some 1:1 therapy here at home, derived from play therapy. We teach skills within a text-rich environment with instructors even though he is able do many of those skills so beautifully on the computer. I want him to try and learn how to answer a question, as much as I want to learn how to understand Adam. As Amanda Baggs put it, I think speaking bilingually is a necessary skill for autistics, even if it is the unfortunate result of non-accpetance of others, or a misunderstanding of what autism is by society. My expectations of Adam's ability here, are I hope, still adaptive to Adam's style.

He goes to school now and I’m sending him to a school next year for SK with all kinds of kids with a shadow -- it isn’t a special needs school in particular and it took a bit of coercion to get him in. This summer, I’m looking further into FC and technology and will try to learn to scaffold Adam’s communication on the computer, as he may need a lapboard. I think, once he learns to read and write, he may become independent on the computer. I am trying to watch his skill-set and find ways of accomdating it.

All of this learning should be called autism learning for anyone who wishes to teach autistic people. It should be learning with autistic people, not learning how to teach in rooms without them. Learning how to teach in autism is dangerous when we use a medical model as a basis for teaching versus having to try harder to understand autism with autistic people, and marrying that with our skill set as teachers to what is already available -- a kind of filtering as it were. This kind of periphery knowledge of autism, or a "pathological" understanding of autism as a deviance from the norm doesn't help. Teaching is not about making someone they are not. Teaching is about helping someone and hopefully lessening their anxiety. It is about recongizing differences and challenges that must be dealt with while finding the abilities to work with. It is not about taking away the “stereotypy,” but focusing on these innate abilities indigenous to every autistic person so they can learn and grow into competent autistic adults. I am not holding up the bar of normalcy to measure this success. I really do believe that the gift of being human, and all the things all kinds of people can teach us, is immense if we work to listen.

Autism acceptance may be a little different for everyone -- some parents have more to deal with than others, and we need to find ways to both support autistic people and the parents who care for them. If an autistic person needs a medication for anxiety, it doesn’t mean you’re not accepting autism. If you use a tool to teach so that your autistic child can learn skills to communicate, that doesn’t mean you are not accepting autism. The difference between acceptance and non acceptance is rooted in a desire to fundamentally change the person who was born to you in ways that they cannot be changed. Persons with CP were approached behaviourally in the 1970’s with a “treatment” called Patterning. It held with it a believe that the person with CP had to crawl before they walked as this was thought to be an “appropriate” developmental milestone. This was very popular therapy back then, touted in similar ways as ABA is for autistic children today as needing to learn “appropriate” ways of behaving and learning as “developmental milestones,” – this concept that one’s learning course needs to be sequenced accordingly for success against the "normal" course of development. With many neurological and other disabilities, however, this fails. A child with a neurological disability like autism, downs, CP, cannot necessarily attain these “appropriate” developmental steps. Usually, I hear from some well-known researcher here in Toronto, that Adam does certain things now because he is at a two-year old level emotionally. I don’t buy it. He is a five year old autistic boy. He is an autistic boy who is part of my world, the way my family functions and has learned to adapt and interact in an autistic way – a valuable way. He has superior intelligence to other children his age. Yet, because of his innate autistic way of being, one school wanted to hold him back a year because he isn’t acting “emotionally” appropriate for his age. It may seem logical to parents while children are little. One year doesn’t seem like much. But the years pass, our children remain autistic, and the judgments don’t get any easier.

The other day at JK, I spoke to a grandmother of one of Adam’s friends, K, who has Aspergers. Apparently, they are forging a friendship of putting their faces close together during gym and they are very happy together. The grandmother told me that K came home and said “I’m a bad boy, but the other kids are good.” She said she was shocked – he was equating his worth with that of the other kids – the “good” kids who were not autistic. He saw himself, by comparison, as “bad.” If that doesn’t make every parent of an autistic child out there furious, it should. As long as we hold up this holy grail of being “indistinguishable” from others, our children will continue to feel bad about themselves, as the world thinks being autistic is inherently wrong.

It never ceases to blow my mind
It does it to me everytime
Standing here looking at you
It makes me wonder what he was up to
Was he thinking about me
When he thought about you -- Keith Urban from Album Love, Pain and The Whole Crazy Thing

Autism Podcast

First, I want to thank Anderson Cooper of CNN last night for having Amanda Baggs and Dr. Morton Ann Gernsbacher on his show with Sanjay Gupta. It was a positive a fair TV program about autism, which we don't see very often.

Here is the Autism Podcast show I also did recently. I am only speaking this quickly because I found out my mother had to go into urgent surgery about the same time. All is well now.

You'll Never Think The Same Way About Autism

Amanda Baggs will be on CNN's Anderson Cooper tonight at 10 p.m. "You'll never think the same way about autism again" was the byline for the upcoming show. View the CNN story here.

Many thanks to Amanda for stepping out and doing this difficult thing.

Good Practice in Representing Autism

I just gave my presentation in Montreal at Giant Steps. It was called "The Selling of Autism: how the marketing of fear manipulates the way we treat autistic people." It came on the heels of the 60 minutes piece and of course, the piece in The Globe and Mail, with the advent of prenatal screening not that far off.

I couldn't do too much this week, as my mother went for urgent surgery yesterday. With two rounds of cancer already, and now this surgery, I can tell everyone with certainty that autism is certainly NOT like cancer. Autism is another patch on the quilt of humanity. It is not always easy, but nothing in life is easy.

When I visited Thomas Henderson at Giant Steps in Montreal, a beautiful school for autistic children up to age eighteen and met the kids, I felt at home. The kids were wonderful, all very happy, smiling at me or working. I had the pleasure of meeting another Adam there -- who presented at the ASD Perspectives Lecture Series, autistic and nine years of age. NINE! He presented for one hour. How many other nine year olds would be able to make an hour-long presentation? Adam came up to me and told me he was on CTV. He was quite excited about that. He asked if I had a website, as he so desperately wants one. I said I did. He kept begging his mother: "I want a website too!" and I felt I got the mom into a bit of trouble. Adam, apparently, has found his way into university chat rooms, and like any parent of a young child, she is very concerned about the potential danger. I then met Hugo who also made a presentation, who told me how he enjoyed letters and numbers -- certainly like my Adam -- and how he likes the number six, but not the five becuase the five looks like it could eat you. I heard kids whooping like my Adam does, and for a moment, I thought it was him. There was artwork everywhere, Smart Boards (very cool white boards that kids can use wireless keyboards to do classes, but that you can also write on), pecs, kids doing sign language, and OT room and mroe. But what struck me, as how at home I felt there among the children and teenagers. I felt like I wanted to stay there. I realized, that this was a real telling -- that despite what we write about something, ideals do not always reflect the way we truly feel when we are immersed with dis-abled people -- that we know when we are no longer prejudiced, in this case towards autistic people, until we are swathed within a community of autistics. In my case, I felt warm. I felt I belonged. I wished that my Adam was there with me.

There really is so much to say in how the piece in the Globe was written, how it showed no other balanced side to those who really love their dis-abled children as they are, who find the joy that is inherent in their children mixed in with all those challenges. It doesn't reflect how those with dis-abled children, like the Downs Community of the Canadian Downs Syndrome Society, feel about those wanting to prevent autistic or Downs babies from being born (notice how they celebrate Downs). It doesn't reflect how wonderful my Adam is, who is like the many of the other autistic kids and that the "remediation advocates" use to complain about autism, despite the fact that they like to diagnose Adam without meeting him in order to state that their plight is worse.


When Brenda Deskin announced on CFRB Radio: "Autism is a living nightmare: my son Michael hit me today," I felt really bad for Michael, as autistic people are criminalized all the time, and that is inherently wrong. We need not unfairly represent in order to receive accomodations for our children, or support as parents. One does not need to advocate this way at the expense of a person's dignity. It calls into question about whose life is at stake here, whose career, whose reputation, whose pocketbook, as it seems people are more concerned about all of this rather than really seeking to assist and educate people with autism.
Further, considering how the dis-abled were referenced in history (Nazi Germany), we might need to call into question the legality of making references to the costs of being human. Deskin's fact sheet, co-written with Andrew Kavchak and written in 2005, suggests that not only should special education classes be delivering ABA therapy (ergo you have no choice in how you wish your autistic child to be educated), it also states: that "autism is a lifelong affliction [bold mine] that will result in 90% of afflicted individuals being placed in institutions and residential facilities." The "fact sheet" says it just like the Nazi's did.

It calls into question, when a reporter suggests that all special needs kids should be screened (Boston Globe Editorial: A Clash of Rights in Education) before being allowed to enter schools and programs because someone has over-generalized and criminalized autism,
what prejudice is and why the same screening does not exist for non autistic people who can be more agressive and violent. Prejudice IS a different set of standards that we apply to one set of people over another, noted Professor Emeritus, Bernard Lewis from Princeton, and it is alive an well in autism. All children can be a challenge for their parents. Parents and society still have a responsibility to protect their children from a world that will apply prejudical standards. Therefore, the way we talk about our children and represent autism, is so important here. In our society, representation matters.

Today, with Canada's Fetal Alert Network, the stats show that in Southern Toronto, almost all women who have a confirmed amnio for a genetic defect will terminate -- even late term abortions for children with a cleft lip.

There is some urgency here. We have a huge lack of information and education about living with a disability from those who are disabled and the families who love them. Instead, the media prefer to write about disagreements, challenges, and drama and prejudice is rampant. I was so sad that the article with Szatmari did not contain a balanced view, or a view from an autistic person. Autistics from The Autism Acceptance Project board wrote in after the article, but their letters were not published. We do not get to hear that often from autistic people in the media in order to have ethical discussions about what screening means for autistic people. I wrote in a letter that also went unpublished and of course, only a letter supporting the prenatal screening steamroller was published. I find it continually astonishing that reporters call parents first regarding opinions (including me) and never autistic individuals. Science is big drama these days -- big breakthroughs into understanding our genetic makeup. But we are more than our genes. We are a composite of genes and spirit -- an ineffable makeup of the mystery of the imagination and human spirit. In light of what we know and can do with human life, how much must we now begin to discuss our responsibilities to protect life, to protect that part of being human that we do not know, and perhaps must not "know," for it is what makes us who we are.


On the advice of Margaret Somerville, where I derived this idea of protecting human spirit from her books: The Ethical Canary and The Ethical Imagination, and who is an ethicist and professor of law at McGill University, I suggest we begin by finding what we share as parents and autistic people -- what we value. If I can send out an idea for others to blog about, is not always what divides us (but it is necessary in order to identify bias and prejudice), but also, what unites us. I ask that people expand this list of what it means to implement a "Good Practice in Representing Autism". I have begun a list:


1. Inclusion of autistic people and their voices in fairly talking about autism, at all levels of policy making regarding autism;
2. Reflect autism as a diverse condition that has strengths and challenges;
3.Autism not as defeat in relation to “norm,” but a different way of thinking and learning;
4. Inclusive language instead of exclusive
5. Humanitarian references (not dehumanizing ones)
6. Ethical discussions at all levels: media, autism organizations and societies;
7. Discuss how we protect the “mystery” of being human: What is LIFE?

Reasonable People

Ralph Savarese’s book Reasonable People: A Memoir of Autism and Adoption is a heart-wrenching memoir of autistic abuse, abandonment, adoption and durable love. Ralph, who is an English Professor at Grinnell College in Iowa writes about his family’s arduous journey to adopting DJ who has been separated from his “neurotypical” sister, Ellie. Their biological mother, Rhonda, a substance abuser, is in and out of their lives and later creates obstacles in the process of adoption. During Rhonda’s absences, Ellie was left to assume care of DJ until she was taken to move in with her biological father. The father, who is self-described as “an unemployed former drug user,” marries an HIV positive woman who takes in Ellie, in order to rebuild a “normal” life – a life without DJ. DJ, in turn, is subjugated to the perilous world of foster care. The split between biological siblings is the constant source of pain for both throughout,and we view it through DJ’s transcripts and Ralph’s re-telling of events.

Emily, Ralph’s wife, is an expert on inclusion and had been working with DJ. One evening she brings DJ their home. In a charming early encounter, we watch as Ralph falls in love with DJ when they lock foreheads and stare at each other -- this is their first “connection.” Soon after, Ralph begins to engage DJ in a tickle game which becomes their early pathway to life and love together.

As the story opens, Ralph foreshadows the stress to come by illustrating the brief reunion of DJ and his biological sister, Ellie, and how the shadow of sorrow follows their temporal happiness:

“With great difficulty Ellie pulled DJ uphill. At six, her birth brother, whom she hadn’t seen in nearly three years, understood rollerblading to be a matter exclusively of somebody else’s exertion. While you labored, he’d stand with his legs a bit too close together, his chest a bit too rigidly upright, his eyes more than a bit too captivated by whatever birds were darting overheard or leaves were rustling in the wind….With amazement, we watched the girl effortlessly reassume the role of facilitator as she directed DJ around the park….Even more significant, she refused to be saddened by what her brother couldn’t give her after their long separation – what he couldn’t say or do. But then he had given her something. In fact he’d stunned her, stunned all of us, when just before we were to meet in the city, he’d spotted his sister a full block away, run up to her, and like a character in a French movie, placed his hands on her shoulders and kissed her on both cheeks…The girl seemed to ride the gesture right into the afternoon, as if it were pulling her.”

It pulls us too. We can’t help but root for the reconnection of DJ and Ellie throughout the book. The anguish that DJ experiences as a result of separation is increasingly evident as he begins to acquire language through Facilitated Communication which Ralph notes, “I’m with Margaret Bauman, a neurologist at Harvard who appears in Autism Is A World and who is quoted in the Washington Post article as saying that FC was “oversold in the beginning” and then, like the proverbial baby, “thrown out with the bathwater.” Ralph shows the belabored task of teaching literacy to DJ and it how it opened up a whole new world of psychological stress and awakening. “Language meant anxiety,” said Ralph:

“Language meant fear….Put provocatively, language is the group home of life. By the time an infant recognizes his separation from his mother and can speak of her as a discrete object, he is already racing toward the lonely singularity of adulthood.” And,

“Ellie became the name he’d track like a bounty hunter through the swamps of longing…”

As DJ’s literacy unfolds, we begin to witness increased aggression and violence at home and at school, and we learn more of his own abuse in foster care. Ralph refers to DJ’s mind in these references to abuse like a “Mission Impossible communiqué, combusting immediately after it’s read.”

Savarese’s parlance about DJ, and the recapturing of a traumatic past through FC, continues to suggest that we need to look longer and harder at cognitive disability and all disabilities. The violence and aggression, alongside Emily and Ralph’s perseverance to help DJ - through the post-traumatic-stress, through trials of medications, through the rocky road of mainstream schools and inclusion (even though inclusion worked to DJ's and his classmate's benefit because of the Savarese's) - all communicate the challenge of autistic behaviors while suggesting that we must always consider that there is more to our autistic children than meets the eye; that autism does not render a person unaware. In fact, we sense where this autism journey might take us early on when Ralph states in reference to raising DJ, “To us there was no such thing as unbridgeably distant.”

There may be no such thing as a bridge that can’t be crossed but Ralph illustrates there are many broken bridges. His radar for prejudice is acutely sensitive throughout the book, and this is illustrated in the way the public viewed DJ’s behaviors on an airplane, to schools, and sadly, to a visitation with Ellie and the biological father when the latter says,

‘Does he take their tests.? What’s the point of this inclusion stuff, to make the parents feel better about having a retard for a son?’ The man actually used the word ‘retard.’ I don’t’ know if he’d discerned that he was in trouble with his daughter, had exaggerated DJ’s disability, or whether he suddenly felt that he was in trouble with himself….I don’t know if he was merely like so many other people who know nothing about disability and advance a case of prejudice.”

Ralph succeeds by making DJ not only the main character, but gives him his own voice by relaying their computer “conversations” to us, which are recorded meticulously.

“Part of what we were doing was compensating for the autism, but mostly for DJ’s belated emergence. In fact, DJ would end up becoming a great professor of feeling, understanding in its innumerable cultural inflections – all of this a rejoinder to the autism experts and their ‘devastating’ theories.”

In Ralph’s book, we bear witness to this difficult process of adoption, autism, stress, epilepsy, trauma and the struggle to connect and create a family against many odds. One can’t stop thinking of the challenges that adoptive parents take on willingly while others may complain endlessly about the plight of their family because of autism. But Ralph will have none of that. While there is pain, there is never talk of a cure, or of wanting DJ to be anyone other than who he is, except to alleviate the struggle. Like most parents, Emily and Ralph want to help DJ with communication, and to have him happy or at least content despite a life of loss, to hopefully replace it with a life of gain.

For all of his autistic behaviors and inability to talk, DJ is bathed in Ralph and Emily’s considerate light, where all of his actions are interpreted as real communication and thus DJ is returned from a level of subterranean species back to humanity: “Only her goodbyes would provoke the emotional scurrying of a frightened animal or the hiding-in-plain-light routine we’d come to think of as the mind in brilliant camouflage.” Here, Ralph makes reference to DJ’s encounter with his biological mother.

Perhaps Ralph is predisposed to taking care of DJ: “Can one be too serious? Can one still live, as Thoreau once put it, ‘deliberately?’” With all of his self-deprecation and reflection throughout the book, I am convinced that Ralph and Emily’s act to adopt DJ was not to be benevolent for the sake of it, or to bestow pity on DJ, although they truly had strong feelings for what he had been through. It is their persistence and work with DJ that carries the narrative. There is a sense of what’s right and wrong, and justice due to DJ. There is so much pain throughout, and despite all, the triumph is one not only of will, it is one where we watch a child, otherwise lost and forgotten in the world of foster-care, now remembered, celebrated and succeeding as an autistic individual -- and respected no matter what.

The last chapter was left for DJ to write. As a parent of an autistic child, its message struck me as serious, considering the lessons we are learning about autism, and how autistic people best learn:

“Dad has written a book about my fresh start. I’ve written the last chapter. Please read it because in it I write about how years of early lessons were wasted. Why weren’t you teaching me to talk, to read, and to write? All you had to do was awesomely encourage me as smart and really kind, and fresh start really could have begun sooner. Your breathing would make me nervous. People weren’t assuring me as sweet, inspiring me to work at dreaming of typing to responsibility act like everyone deserving respect…Quite pleased that you are respecting and reading this tested-as-smart, growing up boy’s resentment. I live in constant fear that respect will be taken away, and I will have to return to easy years of doing nothing….Reasonable people should each see what they can do to free people who can really understand.”

This is not necessarily a story with a proverbial happy ending which some people come to expect: a miracle cure for autism as it were, or DJ’s journey to “normalcy.” Sadly, DJ and many others like him, will continue to be subject to discrimination, and the anxiety may never really be over. As a daughter of an adopted child, I am also more than aware of the painful, incomplete legacy that lives on inside the adopted one, and how that can even carry on in continuing generations. This is, however, a story about what life is all about: trial, error, perseverance, and faith in people. Faith in love. Ralph, Emily and DJ give us that, and much more.

The Reason: The Joy of Adam

For Adults with Special Needs

Congratulations to Kathy and Danny Laszlo, organizer of DANI "Developing and Nurturing Independence." I hope the Toronto community will come out and support this fundraiser to nurture the independence of adults with Special Needs. I am priviledged to be honoured at this event with also Rabbi Joseph Kelman, co-founder of Reena, Carol Goldman, principal of Zareinu Educational Centre and Dr. Gerald Friedman, chief of pediatrics at York Central Hospital. Please view this article for more information on the upcoming GALA EVENT.

Son Caged in Class

As I become more sensitive to perspectives and language, I caught this article today in The Globe and Mail: "Son Caged in Class, Parent's Say."

" 'Just imagine. My son would come back from school and he always appeared troubled. He had tried to tell us what was going on, but we couldn't understand what he meant. It wasn't until we asked him and his twin brother, who is in the same class, to draw us a picture of this enclosure that we realized what it was...'

Ms. Sinotte insists that Felix is a normal intelligent child and said there was no reason for this treatment."

SCREEEEEEETCH. What does this mean? That it's okay for other children who are "not normal" or let's posit for a moment, autistic, to be caged?


"The school board called a news conference yesterday, explaining that it is normal practice to place turbulent children in an isolation area for about an hour throughout the course of the day 'so they can rest and clam down.'"

Hmmm. I can think of better rooms, like snoezellen rooms,for instance, that provide that calm and are not cages.

What era are we living in?

Life

Prenatal Screening and Ethics

In the Globe and Mail today, you will find a series of letters, and one paragraph of one I sent in, published regarding yesterday's article "Expand Prenatal Gene Tests, MDs Urge."

Two pages later, one of my favourite ethicists was quoted on The Ashley Treatment, Margaret Somerville, who is author of many wonderful books (The Ethical Imagination: Journies of the Human Spirit, The Ethical Canary) and founding director of the Centre for Medicine, Ethics and Law at McGill University.

She also targets NYT writer Peter Singer for his latest support of The Ashley Treatment and writes:

"He believes in extrinsic human dignity -- that is, dignity is conferred on us by others; we have dignity if they see us as deserving it and that depends on how well we function mentally and physically. Below a certain level, we don't merit dignity and the protections it affords. And because dignity is conferred, not innate, we can, as Mr. Singer proposes, confer on animals the same kind of dignity we do on humans. Humans are not special in any relevant sense and thus not deserving of respect different from that owed to other animals. So if you can redesign your dog, why not your disabled child?

Mr Singer says the surgery is ethically justified on a wide definition of 'best interests' and uses a utilitarian ethics analysis. That analysis does not involve an inquiry into whether something is inherently wrong. What is and isn't wrong depends on circumstances.

I suggest we need to inquire into inherent wrongness (a prinicple based on ethics analysis). The arguments that the intervention on Ashley is inherently wrong would include that we're dong something to this girl we would never do to a non-disabled child; that it's not 'the least restrictive, least invasive way' to achieve a necessary benefit (an ethical requirement for 'wounding' interventions such as surger) because we could provide assistance to the parents; that it's only peripherally therapeutic and cannot be justified on htat basis (although a medical cloak makes us feel better); and that Ashley is being treated as an object to be 'designed,' not a natural person to be respected whatever her state -- which afterall is 'her..."

Once we leave ethical analysis at the individual level, the case has very disturbing features at the level of societal values. May we redesign disabled people to make them easier to care for? They used to take out all the teeth of the mentally ill people so they couldn't bit their caregivers, but we are rightly appalled by that now. And waht about the precedent it sets for our society with respect to how we value and treat disabled people in general?

In deciding the rights and wrongs of the Ashley case, we should keep in midn that the 'ethical tone' of society is not set by how it treats its most powerful, strong and independent citizens but how it treats those who are weakest, most vulnerable and most in need. It's hard to imagine anyone better fitting the latter description than Ashley."

On February 19th, I'm presenting a talk at Giant Steps in Montreal which I've now re-titled: The Selling of Autism: How the Marketing of Fear Manipulates The Way We Deal with Autistic People. In it, I will be talking about my experiences as a parent, as someone who initially knew nothing about autism faced with dire messages from parent groups, doctors, and of course, the media.

Articles and doctors who promote prenatal gene tests as 'mandatory,' or necessary, only heighten the fear, the urgency. The article on screening yesterday states that it will enable better, earlier interventions in the context of disabilities and Down's Syndrome. We've heard that before in autism. But I ask better than what? If, as we are beginning to understand, autistic people do learn naturally, in an autistic way from their environment (a way underappreciated by the larger population so much so that we are seeking to ameliorate autism and autistic learning altogether as 'inappropriate'), what better intervention can their really be? ABA studies with children under the age of two have been useless, as the children could not "respond" under that age.

I suppose you are thinking like I'm thinking that "in your face," therapy might the way in autism, but how much more "in your face," can you be to a six month old baby than we all likely already are?

I am skeptical and concerned that prenatal testing for disabilities, under auspices of finding "better interventions" will be used as a cost-effective measure to get rid of any person with a physical and neurological difference, instead of accomodating people. We saw the costs of the "mentally ill" written in German posters and ads to justify their extermination under Hitler. Juxtapose this financial "analysis" against our modern politics and lobby efforts: "it will cost taxpayers," or "autism will be a burden on society if..." and we can see that we have not come very far.

Just Super

There are days when I'm just pooped -- surgery, new puppy and life in general. Minus thirty with the windchill and a low pressure system that makes my head want to explode, it feels like all I need is a dose of springtime, fast! Adam and I headed to the movies yesterday, something he has begun enjoy these past several months for the first time. So far, he's seen Flushed Away, Happy Feet, Charlotte's Web and yesterday, a boring flick called A Night At the Museum. We headed back to the car and a gust of wind nearly blew Adam out of my arms and wouldn't allow the door of my Honda Odyseey to close. My fingers were frigid with pain. I vowed not to go out for the rest of the day, so we hovered over the fire and dipped strawberries in chocolate sauce.

I forgot it was Superbowl Sunday, because I just don't care. Well, not until it started. A friend and his son, a year older than Adam came over to watch it with Henry and Max. After his bath, Adam went downstairs to join the "boys," noshed on pizza and ate a few potato chips. He was positively giddy and silly, obviously enjoying the gang, and intrigued with the patterning of the football players and the numbers on the field, for a few minutes anyway. Snuggling in between everyone was much more fun. Later, he played a bit of ball with the five, soon to be six-year-old visitor, something we don't see often without prodding. He was jumping, laughing and all red in the face.

I took him to bed at eight -- it took a while to settle down. All I could remember is how giddy and silly and red in the face I used to get at his age when people were together, having fun, eating chips and pizza and free to play in the basement.

The apple doesn't fall far from the tree.

On Not Being Human

Dr. Morton Ann Gernsbacher just released this article in her Presidential Column On Not Being Human

Also read Susan Senator's post today and her reaction to this piece -- another way of criminalizing the disabled (remember Captain Hook as a narrative figure as an example of how the disabled have been represented) and therefore finding reason to either exterminate or segregate them. Read the Boston Globe article she posted today here.

The First Step in Dehumanization

A Credo For Support (People 1st version)


In April, I am going to Aushwitz and Treblinka. It will be a difficult trip as I have another story to tell outside of autism, but that's for another time. For many reasons, I am profoundly affected by prejudice and labelling that dehumanizes people. In Europe, the first step to dehumanization was to make the Jewish people wear the Yellow Star of David on their clothing. The second step was to take away their ownership. The next, to ghettoize them -- you see, people were not ready to accept instant extermination of the Jews. It had to be a process. It was the process of dehumanization that is disturbing me greatly, and this post is intended to make us all think critically, of how we may be naively doing the same thing to disabled and autistic people.


It may seem benevolent to seek a cure for autism, if you believe autistic people are ill, if you believe that you are helping them through research by "solving a puzzle." But ask yourselves this: when you refer to humans as a puzzle, are you also stripping away of piece of their humanity -- suggesting that with autistic people, a piece of them is missing? This is not a healthy way to represent autism. Humans are never a puzzle and we have to consider how attitudes are shaped by representation. If you think language and symbols are trivial, and not that important, think again.



I think if you want to do something right, if you need a logo, use the rainbow, the circle, any symbol that accepts diversity, that denotes that we all belong and we are all equal.



Please read other responses to the way Autism Speaks conducts its marketing. Just click on each number to begin reviewing:
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There are many more people who are disturbed by the marketing and goals of Autism Speaks. I'll leave it up to you to search for more.