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Location: Toronto, Ontario, Canada

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

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

Monday, October 31, 2005

There was an article in The New York Times a couple of weekends ago where a mother discusses the emergent sexuality of her teenage autistic son. She talks about how he is finding girls "hot" and asking even the "hottest" girls out on dates, unaware of the cliques and social niches that may influence other boys. She is concerned he'll have his heart broken, but then she notes that he doesn't seem to mind.

A response to this article that I read yesterday was by an enraged mother with another son with autism -- a child with lower functioning. She was upset how this mother was upset, or representing her son -- noting that not all autistic people are verbal and that all parents of autistic children work hard.

I am, quite frankly, upset by the politics of autism. The politics of which therapy is better, the court cases, whose doing a better job, which child is doing better -- the comparisons of one autistic child to another -- which is probably done by the best of us, but which is unfair to the child.

Has there ever been so much competition in the Deaf, Blind, Downs, Cerebral Palsy and other communities? What does all this dissention serve?

One mother may want to avoid me because Adam is "doing better" than her son. I may then turn around and sigh as I see another autistic child who is doing something that Adam cannot yet do. I know that comparisons that we make, even silently, are inevitable, but they are torture and in the end, are useless.

I see autism as a spectrum. Each child is on a different point on the spectrum. In other words, each child learns differently and has to jump different, and in some cases, more hurdles. But I believe the learning can happen. Does it really matter when it happens. Whose time line are we on anyway? So what if it takes someone until the age of 40 to become independent. I think we should be so glad for it and glad for that person.

Autism, the way I understand it, is a different brain construct. Instead of superhighways (those connections in the brain that make certain things for us a given), are as Dr. Gutstein puts it, "country roads in persons with autism." The processing takes a little longer, but with more and more use and practise, we can mold that maleable brain into making the connections more efficient.

Dr. Sacks talks freqently about the incredible pliability of the brain -- we certainly do know the abilities of stroke victims who are able to reconstruct speech and other areas of functioning using completely different areas of the brain -- different than the areas that those functions were orginially based.

Every person with autism can and will learn. I wish parents would stop the painful comparisons that torture them and begin looking at autism, even at its most challenging, with more hope.

Saturday, October 29, 2005

My eyes are blurred. I've been up every night this week -- either from 3 a.m. on (Adam's sleep patterns are changing again and he wakes talking about the things he's seen the previous day), or, I've been out until 3 a.m. at fundraisers. Met some genome researchers last night from Toronto Western Hospital.

Then today, I took Adam to the Snoezellen Pool at Bloorview Macmillan Centre. The word snoezellen is actually taken from two Dutch words: "snufflen" meaning to seek out and explore and "doezelen" which means to relax in a wonderful place. The idea is to expose children with various issues to relax and in Adam's case, the visual stimulation and relaxation enables him to talk more and focus.

So I take Adam to the change room -- there is another mother needing the large flat changing table to change her child with cerebral palsy who must be around 7 years old. The girl is listless and her eyes are nearly closed, leaving the impression that she could be sleeping. The mother talks sweetly to her child, getting her ready to enjoy the pool -- a shallow pool where the lights are dimmed so we can see changing-coloured fibre optics, lights and shapes on the walls, with soft music piping in.

Another child -- a young teenager cannot move around much. She is taken from her wheelchair and placed in the shallow water path that leads like the yellow brick road into the actual pool. I'm afraid she is going to drown as she sucks in some water and cannot move her head well.

A young boy -- not much older than Adam is also autistic. He is afraid of the water and screams as he's being placed in it while the bright lights are on. Soon, the lights are dimmed, and he calms down. His mother can gradually take him into the water as they watch the shapes move on the walls and he is relaxed and learning to enjoy the water. He cannot talk.

Adam is delighted (we taught him how to swim with a suit that keeps him afloat -- he was no longer as fearful and he learned how to doggy-paddle with a look of glee). He wants to jump in. He is yelling "water, water!...1,2,3 Rocketship!" as he pleas with me to throw him up in the air on the count of three. He is singing "twinkle, twinkle little star" when is sees the stars projected onto the walls. He swims to the lights, to the bubble tank. He lets me swish him around. He jumps up and down and sings with me in the shallow end. He says "splash, splash" as he kicks the water around.

I felt at odds, really. Adam was having a ball. He could move his body at will. The visual stimulation fulfills his sensory needs so he can talk more (although he is talking more in general at home too).

Here I am talking about CURES for diseases without considering the thoughts and desires of those who cannot move their bodies at will. While Dr. Sacks talks even of paraplegics who learn to adapt, I take a deep breath about my recent arguments and what they imply. I can talk only of the community I am directly in -- the community of autism, and from a parental perspective, not an autistic one. I honour the words written and spoken by autistic people and I encourage them to keep talking about themselves and their perspectives. I can only hope to facilitiate some of this.

I cannot speak for the parents whose children are physically disabled, for instance, but I do know one mother of a child with CP who talks with pride about the major achievements of her child -- milestones that are part of everyday life for the rest of us. These are the miracles that the "abled" world cannot partake in. They make us appreciate life, in all its forms.

Thursday, October 27, 2005

Back to my musings about CURES. I suppose I should clarify why it is I have the perspective I do. After working as an art curator, I became a very adept fundraiser, so much so, I was hired to lead various arts festivals and later, became director of corporate development for some health charities here in Toronto. I am the developer and the mind behind one charities' click to give program, which was called "Click for the Cure." Alongside one other major charity, I was the first in Canada to get it online and generate corporate support for it.

So I know the leverage and power of that word from a marketing perspective. In order to have the needs of the charity met, the drive had to be goal driven. Being goal-driven gives a reason to support a cause. If not a cure, then why? Why give? To give for any other reason than a cure seems too evasive and uncertain.

Of course, within autism, I do hold a different perspective. I believe that research has enabled us to understand the complex framework of autism so that we can understand people with autism and offer them a better quality of life through such understanding, and providing better and more appropriate education.

It is not as if I am saying stop the research. I am not daring or confident enough halting hundreds of years of PROGRESS. I do ask questions, though. I believe we are all asking the questions about what progress actually means, at what costs do we achieve it, and, are we really progressing?

Through science, technology, economics, we have nearly deified ourselves. We have come to a point where we believe we can FIX anything. The environment has gone to pot? -- it's okay, we can fix it when we need to. Getting old? -- don't worry, we can extend your age and cover it up with botox. Progress seems to be intrinsically entwined with having control, and with immortality. Remember Gilgamesh? We have become victims of our own hubris. Jane Jacobs states: "History has repeatedly demonstrated that empires seldom seem to retain sufficient cultural self-awareness to prevent them from overreaching and overgrasping. They have neglected to recognize that the true power of a successful culture resides in its example. To take it successfully, a society must be self-aware." (p. 176 Dark Age Ahead). In terms of a cure of autism, which will sometime be on the horizon, I ask that we continue to ask the questions that I mentioned in my previous entry.


Adam is talking more than ever these days. I've been insisting that he answers questions, I model the answer or I have prompted it -- he had a difficult time understanding what yes meant until I put it over and over into context. Now, he's telling me he's hungry, he answers me when I ask him if he wants something (Yes or No), he calls for me, or Flor, he answers all kinds of questions and he understands receptively. He can print his own letters, and do so many things that he couldn't do a year ago.

As in progress, it is better to measure it in years and months than in days or weeks. It is easier to see the huge and deliberate strides Adam has made within a year.

Tuesday, October 25, 2005

I talked earlier about the quest for the cure -- that Holy Grail if each and every disease and disorder (and I think we are creating more of them than ever).

Dr. Sacks spoke about the Deaf and the Blind. When he asked people who adapted -- adapted their brains, their senses after a period of having hearing or sight and then losing it, most of them claimed that they would not want to be cured. They stated that they would not know how to cope going back after this period.

On the radio program that I keep referring to, The Infinite Mind, AS panelists said they did not want to be cured -- that they didn't feel "broken." They felt that they were better off "than the neurotypicals."

I had this discussion with NAAR - The National Alliance for Autism Research -- as I was the sponsorship chair this past year. The word cure is part of their marketing and their raison d'etre. The money gets dispersed to prominent researchers around the world to study autism. In my view, it is a greater understanding of autism that is enabling us to provide better therapies and making us better parents in dealing with autistic children. I believe in the research, but I'm not sure about the cure. Yet, I know there are some families who desperately want to find a cure. I asked NAAR, in honour of autistic people who are offended by the semantics of cure, disability, abnormal, erradicate autism, to be careful of those words and to exchange them for difference.

In my strong opinions about not abiding by one type of therapy, draconian approaches in some ABA programs, poor teachers and agencies who claim to be the experts in autism, and basically, those aiming to finanically benefit from the plight of others, I am aware I run the risk of certain people being wary of me.

Like an autistic person, I feel misunderstood. Shouldn't we be asking the question about what is may mean if we find a cure for autism?? Should we not leave the decision to cure autism to those who are autistic? And if we do have cures, which part of autism will it address -- there are so many areas of co-morbid disorders in some people autism -- anxiety, self-injurous behaviours, and many more. Which parts can be addressed with "a cure?" If we find a cure, what aspects of autism -- the gifted parts -- can we maintain? Autistic people claim that autism is part of their personalities. Are we stripping away their being by taking away their autism? Are we saying that they, as autistic people, are not vital and important? Are we suggesting that they are....broken? By making people the same, are we therefore not running the risk of homogenizing society?

These are questions that we must ask ourselves now. We may be 50 years from some sort of "cure" and in the meantime, we should be debating this bioethical issue.

I hope I can make a dent in furthering awareness about autism. It will be autistic people who will ultimately have to keep advocating for themselves as they will have the strongest voice, and I'm so glad for their website,, and the many books that are written by them including Donna Williams, Dawn Prince-Hughes, Stephen Shore, among the many others.

I attended a school meeting today. One father mentioned that he never understood the culture of difference until he had a son with an issue. I am learning that we "normal" people are closed to a wonderous world. There are cultures of different kinds of people out there that are truly fascinating and have every right to the same education and places we do. Deaf people have their own graceful dynamic language, autistic people curiously migrate to one another. There is a world out there that is bigger than we are.

When I was born, my mother used to tell me the story how she counted all my fingers and toes was grateful that I came out "normal." I think about that today, and consider how absurd a thought that was, now that I have a son with autism. We must ask ourselves what is normal? Normal seems to be one of those mytholgoical vapours that have been passed down -- normal seems to be anything that does not act differently in any way than a neurotypical person. But considering how vast the population is of people who are not NT, perhaps we must reframe our way of thinking.

And so I come to autism as a social construct. We create difference and inequality in society by how we provide, or do not provide supports. Paula Kluth in her book about inclusive education for autistic children You're Gonna Love this Kid states:

"Many people with autism have experienced difficulties due to societal and cultural ideas of how people should look, interact, move and behave. Although most people with autism will tell you that "it" is real, that they do experience things in different ways, that their bodies are uncooperative, or that they have sensory or communication problems, it might also be suggested that autism is in some ways exacerbated by an inflexible society. That is, autism is a social construction; it is a phenomenon that is created and recreated through culture, interaction and social circumstances. For instance, people may feel more or less disabled on any given day based on whether appropriate supports are provided for them or whether they are expected to communicate in a conventional way."

Jonathan McNabb, she writes, suggested that neurotypical individuals (people without autism), stop assuming that difference means deviance and start understanding the autistic experience from those who live with it. Consider a passage written by people with autism where they imagine a world where autism is the norm and being typical is a problem:

"Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviourally rigid and frequenly insist on the performance of dysfunctional, destructive and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared with persons on the autistic spectrum. NT is believed to be genetic in origin. Autopsies have shown the brain of the NT is typically smaller than that of an autistic individual and may have overdeveloped areas related to social behaviour."


Researcher Uta Frith also notes how mental disorders "are largely defined by the social context of their time." More children now than ever are being diagnosed with autism. Is the result of nature, the environment or new diagnostic criteria (The DSM IV) that came out in 1993? Schools lack the resources to truly understand and service the autistic child. Emergent curriculum is extremely helpful, but most schools use the canned curriculum. Integrated schools with Emergent Curriculum could help foster in a broad sense, an equitable and democratic society, while addressing the specific learning needs of each child (the Indpendent Educational Plan). I am dreading the challenge of finding the ideal school for Adam and wonder if I should open my own. Did you know that most gifted children are learning disabled? Food for thought, dear reader.

I am waiting for Adam to write words, now that he is writing letters. He has already spelled words with his magnetic letters. As a mother with a child with autism, I hold the same hopes and dreams as I would for any other child. I hope he will be able to recount these days for me (most autistic people have incredible memories because the same neural pruning that occurs in other children at 18 months of age doesn't happen -- many autistic people recount their own births, which I find fascinated [see Dawn Prince Hughes for reference on that]).One mother wrote a book of her interpretations of her son's behaviour and later, the autistic child was able to write why he behaved the way he did and recount his perspective.

Most of all, as a parents with children with autism, we can never lose faith and optimism. Yes, in reality there are worrisome days (what parent doesn't have them?), but something tells me to go out dancing and be happy. I have a beautiful son.

Monday, October 24, 2005

I am organizing an exhibition of Jonathan Lerman's work at The Lonsdale Gallery in Toronto. Jonathan is a 17 year old autistic young man. It will run from December 1st-20th. What struck me about Jonathan's work are his faces. So far, in my study of art executed by autistics, the execution of faces isn't typical. Maybe doll-like faces like Henry Darger, but not the kind of faces that show such depth of perception of his subject's character. They may be primitive and Picasso-like, but the type of observation that is beneath the surface is evident. Simon Baron-Cohen, in his speculations about the absence of Theory of Mind in autistic people can now be debated. (Theory of Mind suggests that autistic people are not capable of empathy or recognizing expression because they are mind-blind, in other words, not aware that other people have their own point of view separate from the autistic person).

On some occasions, and even today, when a child cries in Adam's class, Adam will go to that child and hug them. He will get jealous when other kids pay attention to his shadows at school. If Adam is "incapable" of understanding others, then how is he capable of these actions? Obviously, the theory is somewhat flawed.

Other HFA/AS (High-Functioning Autistics/Aspergers)who have verbal skills, eloquently express that they can understand body language and have emotion, understand emotion, etc., but what makes social interaction difficult is understanding all of this in real time. Because body language is so fast and fluid and cooincides with speech -- the processing of all of this at the same time can be difficult for some autistic people.

Just when others don't think an autistic person isn't paying attention, beware. I have a theory that their way of observing may not be entirely typical, but in fact, over sensitive in many cases. Either through peripheral vision, sensitive hearing, everything is getting in -- if even in an overwhelming way. I never doubt that Adam is exceptional in many ways. I never doubt that he is listening and understanding. I have learned that sometimes he just needs a little extra time to process things.

Sunday, October 23, 2005

On the radio program called The Infinite Mind, well-known panelists such as Simon Baron-Cohen, Stephen Shore and others talk about an autistic expression of love -- that parents must reframe their experiences. Instead of a hug, an autistic person might pull hair as an expression of love -- the context must be observed.

Last night at University of Toronto, Dr. Oliver Sacks appeared warm and meticulous, posessing eyes that smiled with a humble defiance that comes with age. In fact, as the evening wore on, I realized that this was THE trait that the actor Robin Williams captured of him brilliantly in the movie Awakenings. Dr. Sacks was articulate yet hesitant in his speech and spoke about "different modes of being." Like the AS people who spoke on The Infinite Mind as well as those that write on, he feels that society needs to rid the notions of normal and abnormal. Instead, we must replace this notion with another semantic, and the word different kept popping up.

I write in my book that Adam's ABA therapists pathololgized him. This for me, a mother and an ardent observer of my son, was not only distasteful, but unbearable. How can a good therapist come into a home of a different sort of person, and begin to follow a list of skills and behaviours and suggest that we would want to make that child as they should be? Surely, when Adam was diagnosed, I thought that this indeed was the goal. But as our lives progressed, and progressed with these new people, therapists, consultants, supervisors and government representatives coming and going daily from our house, I began to feel uneasy. The ABA people came in with the promise of making him "functional," and spent little time observing him as a person but more as an aberration.

Luckily I fired all my ABA supervisors and agencies that I tried for Adam within the first four months of his therapy which began at age 20 months. I also pressed my husband to abandon TPAS (government) funding as they mandated us to do a minimum of 30 hours of ABA therapy a week -- an impossible demand of such a young child. It's difficult for me to hear the glee of parents in school hallways these days "we're so relieved we got TPAS funding yesterday..." (The government recently increased the age to receive this funding past the age of 6 and all of a sudden people seem to be getting funding everywhere). I know of parents who have fought court cases for this funding and have lost their homes and have had to move out of the city. The stress that this puts on a family is too high a cost for the return. Certainly, ABA is NOT the only scientifically proven therapy that works in autism. The myth that it is keeps getting regurgitated by so many -- parents use this in the papers, in our first phone calls when Adam was diagnosed. Parents are putting all their stakes on the vapours of this myth, and that's scarry indeed. There are many therapies that work and ABA is the fashionable therapy of the day. Indeed Oliver Sacks also said that about every four years, the hip therapy of the day predominates. Funny how the government wouldn't look at ABA 10 years ago. Anyway, in my view, it has become all too political at a great cost to people with autism.

Once Henry asked the question, "if you believe Adam will always be autistic, why do therapy? Isn't your goal to make him more normal?" I stuggled with this question for a while until I realized that the purpose of therapy was to make Adam a happier person -- to help him understand himself and his world, to increase self-esteem, to learn new skills that would enable all of this, and most importantly, relate to people. I turned to therapies that felt more suitable for Adam -- to work on sharing and relating, to help with skills that would give him a sense of pride so he could continue with them at will. We moved to approaches like RDI and Floortime and just plain old "incidental teaching" if we want to use technical words here (I ascribe to no one therapeutic approach -- but bits and pieces of those techniques that reach a child). When we did, it was like Adam had his own awakening -- he became so happy and related to us in a way he never had before. He enjoyed playing peek-a-boo, sleeping bunny, and other games and giggled all the time. He became extraordinarily affectionate. My mother said it well : "it was like we were alone in the room when we were with him and now it's completely different."

So, after trial and error, some research and plain old instinct, I can say a year and a half later that listening to Oliver Sacks last night was a confirmation of what I came to believe on my own: that we must honour Adam's autism as part of the person he is and we must nurture his obsessions (or strengths) as well as challenge him in areas that will make him feel competent and give him more self-esteem. I believe in challenging at the right time. There was a day when he woudn't be able to play with a certain toy because of motor problems, but when he is ready, it is time -- and then he can play on his own without assistance. This independence is critical in life and to make us feel whole. I don't believe that even people with the most severe of disabilities can't have some semblence of this feeling, no matter what their limitation. Dr. Sacks mentioned we must encourage activities that enable IDENTITY. Certainly we all feel expanded when we engage in creative pursuits, sports, cooking... It is what makes us human and frees us from the heaviness of life and the limitations of SELF.

Dr. Sacks said "autism must be recognized as a different mode of being and must be proud of itself." As a mother, I do still struggle. The outside always wants to pound in, in such negative ways. School is on the horizon with its rigid currciulae, notions of normalcy, standardized testing. The world is not so empathetic, although we are making strides. Adam is an only child with four older half-siblings, two who are now in university. So I view him as an only child in the sense that he doesn't have a sibling in his face -- relating and demanding on a daily basis. I feel the onus is on me to keep the relating going -- from school, to facilitated play groups here in the house -- I feel a need to keep him exposed to other children in the absence of this sibling. When Henry is not home in the evenings, the onus is on me to play with him, to keep relating. It makes me tired some nights and when I am, I often feel guilty or angry that I'm tired. Logically, I know it is the way it is and I cannot be so hard on myself. I don't have complete control and we all do adapt, and Adam will too. And for that matter, my control could also have a negative impact. It's all a fine balance, I know. Then again, down time and just hanging with mom or dad, is just as important. Being with Grandma and Grandpa for a few hours on the weekends is a gift and a memory he will have forever when they are gone.

Life is pain and happiness and they are intrinsically connected. Without one, we couldnt' feel the other.

Saturday, October 22, 2005

Regression in autistic child development is common, I hear. Adam will progress in many areas and at times, he appears so "normal" and I feel we are "scott free." And then it happens. For a week or two, he regresses into repetitive behaviours, in particular, visually scanning letters and numbers, lining them up, or getting a letter, in sequence, go jump on trampoline, get next letter and so forth. I thought I got used to these little regressions with the relief of knowing that he would still learn and that curve would keep going up, up, up...

I just experienced his longest regression and I became quite upset about it. He started a new integrated nursery school. It is a busier setting and more demands are being placed on him. There are two carpets in the room, one with letters, the other with numbers. Of course, his safe place, when he's uncertain, are letters and numbers, so everytime I peeked in, I would see him contort his body on the floor to look at each letter or number in sequence. At the beginning of week four, I'd had enough. "Push him," I urged the teachers and his shadows. "If he's not transitioned out of there and taught how to play with others and other things, he will never feel competent."

I was so freaked out (it seems I am always pushing people where Adam is concerned), I cried in front of Adam. I think he understood, because that same afternoon, he "snapped" out of it. He began to use his words, he was so "on." I will have to find the psychiatrist's name of the phenomenon that I've heard about -- where parents and children mirror each other's emotions, but when the child feels understood, they feel they can move on. I'll get that reference later.

As far as letters go, I let him do them when he finishes other things. In fact, at age three, Adam is writing his own letters on his magnadoodle. I am so amazed at his determination. I've heard of other kids using keyboards, but not write, and not this young. Has anyone else encountered this? It's also amazing because Adam had fine motor problems, yet with focus and determination, I guess anything can happen. This is autism's gift. It enables focus of such high degree, that so much can be achieved in the niches that interest our children.

For fun, I've been teaching Adam the piano. He has begun to use two hands now, just having fun. It's great. That's how I became interested in the piano -- just hacking around. The only thing I do is play for him. I've also taught him do, re, me. He has begun to imitate me.

So, I've been thinking this week of how the scale tips so dramatically when Adam learns. He exceeds in one area and the other seems like it has gone away forever. But I believe that can't be. It seems to be stored somewhere until another connection is made. Then another concept is understood, a new skill emerges. Tiny building blocks are constructed each day, and his learning is so intricate and deliberate that I am fascinated some days and awe-inspired on others.

I'm going to listen to Oliver Sacks tonight at University of Toronto. He's speaking on sensory integration. Keep you posted.

Monday, October 03, 2005

Adam is at the park with Donna, his nanny. I'm trying to get him tired for a nap before going to his bubby's for Rosh Hoshana.

He was so happy today and at school. We are attempting to set up a facilitated play group here at the house with some of the kids at school - many of whom are non-verbal or have trouble with verbal expression. They have all gravitated to one another, this group, like they appreciate each other and they are still clear in their communication. They likely understand each other and appreciate the fact that someone isn't babbling their heads off so fast that they can't understand or keep up.

Henry and I spent some time together this weekend and we are both newly determined in eating better and losing some weight. This is refreshing, so I worked out for an hour and a half today, in my new attempt to lose 10 or more pounds.

Adam is back from the park, so it is time for me to put him for a nap. He is saying my name, mum, mum...It is time.

Sunday, October 02, 2005

You can tell I'm better 'cause I haven't written here in a while. It's amazing how much one must catch up with after an illness. I'm watching Elmo with Adam while writing this...unless I won't have time...he went to Downey's Farm with Henry and my father while my mother and I went to a smokey baby shower that my cousin was throwing for her daughter...I lasted 15 minutes there with my chest...I can't believe how incredibly negligent it was of my cousin to organize a shower in a smokey environment with her daughter who is pregnant, her mother, who is on an oxygen tank and my other aunt who is severely asthmatic.

Anyway, I left after 15 minutes and my mother stayed. My poor mother. I wanted to support her but I really have a hard time with the smoke.

I gotta go already. Too many people need me. :)