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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, November 21, 2005

A day in the life of Speech Language Therapy:

November 21, 2005


I pressed Adam today as I increased my expectations (moving towards joint attention), and introduced some new activities into our repertoire (e.g. Elefun, pretend play with the picnic/food). Adam was not interested in the picture schedule I showed him. If I had to venture a guess as to why he moved the blue card away it would be because I chose all of the activities without asking for his input.

The first game was the Elefun game. Adam and I shared in the excitement of the ‘butterflies’ flying around and he watched me as I caught them with the net. With encouragement and direction, Adam helped me re-load the butterflies into the machine. He was determined to figure out the on/off button by himself. At one point he got up, walked around the toy house and then came back to try again, this time with success.

Next, we worked on a puzzle, a new puzzle. Adam was not interested in this at all! He inserted one of the four pieces I left for him and then refused to do any more. He walked away from the puzzle and headed for the spare bedroom. He stood there he said, “open door”, “I want open door”. I followed him to the door but hesitated before opening it for him. When he looked at me I opened it and told him, “It’s good to talk and look”. Once inside the spare room, we played our favorite Pillow Plop game for a bit of a break.

After that, I began to set the table for the stuffed bear and the toy person. I used a lot of self talk as I put the items on the table. Adam wandered about the room, occasionally looking towards me and what I was doing. Eventually he came close enough to the table to signal interest in the activity. I invited him to join in and he helped set the table and distribute food to the toys (e.g. “Bear needs a spoon. Give Bear a spoon” or “What does bear want to eat? Corn or spaghetti?). Adam fed the Bear ‘pizza with peppers’ with a hand over hand prompt.

Finally, we played with bubbles. I used this activity to target joint attention and cued Adam to look at me after looking at the bubbles (I pointed back and forth between the bubbles and my eyes and told him to “say and look”). This worked well while I was holding the bubble container. Adam complied and went for a walk around his toy house before returning to me for more of the same. I moved the house away from its corner location and Adam stayed with me for two consecutive turns, whining before each one. Eventually I placed the bubble container in front of me. He picked it up and placed it in my hand!

Some things I noticed:

1) Adam had a fascination with round objects today. He picked up the net, the stepping stones, and the pizza pan to wave or to turn them around, like a steering wheel, watching the objects closely. He was deep in thought during these moments and did not connect with me at all, even if I imitated the action.

2) Adam’s walk around the toy house may have provided him with additional time to process changes, re-group, and self-regulate his emotions. He used this walk twice throughout our session, both after the puzzle and during the bubbles. When I moved the house he did not modify his path, and thus did not have the opportunity to reduce his anxiety. Sorry Adam.

I'm hoping that many people will come to Jonathan's opening on December 1st at Lonsdale Gallery. He and his father are driving up from New York to be at the opening. TV will be there. I want everyone to come, afterall, this is a show to promote awareness about autism that is becoming so prevalent. I do not want my son to live on the margins of society, and no autistic person should have to.

I'm including an excerpt on Jonathan's work in the context of art-history:

Art And Autism

When Jonathan Lerman (b.1987) was barely three years old, his parents noticed that instead of continuing to develop normal intellectual abilities, he began to withdraw from the world around him. His capacity to speak, play, experience emotion, and relate to others began to erode. Intensive therapy and special schools could not bring him back, and he slipped into a sort of arrested life. He was diagnosed with autism, a neurological disorder. Then, suddenly, at the age of ten, he began to draw. He did not compose stick figures and crude backgrounds, as children usually do, but parts of faces, eyes, mouths and noses stylishly rendered. In a short time, he was drawing entire portraits, some from life but most from impersonal sources such as television and magazines. He worked rapidly and with uncanny expressiveness, capturing the essence of his subjects in sharp, sweeping lines and smudged shadows. He was a prodigy, a savant of the charcoal crayon.

In clinical parlance, Lerman suffers from a severe from of autism known as Kanner’s autism. As less serious but more prevalent form is known as Asperger’s Syndrome. Kanner’s autism is often associated with prodigious achievements in a single narrow area – rendering, calculating, memorizing, or playing music, for instance. Autistic artists like Lerman live in a largely visual world, which they can render but not interpret symbolically, a world very different from the schizophrenic, whose constant task is interpretation. According to neurologist Oliver Sacks, these so-called savants lack the very basis of artistic expression, the capacity to transform what they see – imagination. They are rendering machines, and their work cannot be regarded as purposeful, symbolic communication. At a deeper level, according to Sacks, people with autism lack what imagination itself depends on, the ability to experience their own inner states or intuit them in others. In the words of the author Temple Grandin, who is herself autistic, such people confront other human beings like “an anthropologist on Mars.”

According to this description, the “art” of the people with autism springs full blown and can never develop, since they accumulate no intrinsic creative awareness of past work against which to measure current creations. Their productions are, in Sack’s telling phrase, “raw, pure expressions of the biological,” their lives, “a collection of moments,” vivid, isolated, devoid of any deeper continuity. As Picasso famously remarked, there are not prodigies in art. That is, art is the product of experience and reflection as much as it is the expression of raw rendering talent. Beneath the dizzying variety of styles and abilities of artists with autism – styles as different as the precise multicoloured architectures of Jessica Park (b.1958), the rough-framed, google-eyed self-portraits of Larry Bissonnette (b.1957), the graphic industrial fascinations of Laan Irodjojo (b.1969), and the bold gestures of Lerman – lies an unreflective, unchanging void, a negative nirvana.

If Oliver Sacks is right that artists with autism never develop as acculturated, “real” artists do, then, like gods and monsters, they do not bear the burden of time and cannot tell us something essential about being human. They cannot inspire us with forms of celebration in the face of our progress toward oblivion. But this is misleading. Only modern art has explicitly assumed the tragic burden of isolated self-consciousness and a temporality that hurtles us forward into the unknown. Earlier art and most scared art sees the world as more static, and human consciousness as only one of its elements. The fact that the “vision” and technique of artists with autism do not seem to change or expand in range or depth means that their relationship to the world is not changing. Is that relationship incomplete? Certainly. Is the self behind it incomplete, limited? Perhaps, but the self as expressed in art is not some discrete thing but only the gestures that embody it, the traces it leaves behind. The repertoire of gestures can be rich and varied or narrow and repetitive, but the validity of any gesture cannot be dismissed without a loss to our sense of what it means to be human and the ways that created forms can testify to the diversity of that experience.

From Lyle Rexer’s, How to Look at Outsider Art

Sunday, November 20, 2005

My mother's birthday yesterday and her eldest sister died. I couldn't sleep again all night thinking about life, death, what's important and what's not. How unremarkable a life seems at the point when it is all most of us will be forgotten. I thought about deathdays as opposed to birthdays -- and how significant they are. I remember the days my grandparent's died. When I walk around Mount Pleasant Cemetary, I study not only the life span but wonder about those I wish I knew mine, knew Adam' long do we have and what will the rest of our lives look like? I just can't help myself think like this. The mind reels over and over in the darkest hours of 3 a.m.

I think about Jonathan coming to Toronto and how excited he is about having his show here in Toronto and how he should be excited. Everything he's about is being validated. And it's not just for the sake of his autism that I'm doing this. He is also a strong artist. His mother, Caryn, told me how he's having a hard time these days -- some aggressive bouts, how he hates having them. Is it the hormones of adolescence? Seizures? The medication he has to take? Frustration with not being able to communicate so that others understand him? One or all of the above? That's the mystery of autism. For many, it has some tough sides. Yet, his mom says that 90% of the time, he's happy and social, enjoys the recognition of his art ... a "joy," she says. I sighed. I can relate to that word.

Going to a regular nursery school was the best choice I could have made for Adam at this time. For all the fretting I did at the beginning, he is talking and relating more and more all the time. All of us have noted the changes. He is more curious about his environment and he plays more functionally on his own than I've ever seen. He still can do repetitious things, but sometimes I let it go for a while, and one he's finished, he stops and moves on, on his own.

It is Sunday. We're going to O.T. soon. We do it 2x a week now. It's been the best thing for him. Learning how to use his body, how to sequence his actions to do a task, has done wonders for him exploring the enviornment on his own -- like typically developing children do without any help.

My O.T. said that the DSM is going to change to include Sensory Disorders -- it certainly makes me wonder how many diagnoses' will change yet again. Everyone is getting diagnosed with autism now, but as we continue to refine the specifics of each child, we'll be better able to tell if a child who has sensory issues is as autistic as the psychologists tell us. Certainly, these are all brands of neurological differences in our children. But the more we know, the more we can do in the way of therapies. I truly hope I will never have to put Adam on any medication. I am so anti-meds -- I see them as temporary solutions, not cures. I prefer to take the therapeutic routes. Work and play and relate day in and day out. People don't realize my schedule or the schedules of other parents with children with special needs... Wake up, teach how to dress, teach how to eat with a fork (all of this takes a little longer), go to school, meet with teachers, work on programs, find a smidgeon of time to write, pick up Adam, have lunch -- teach to use that fork, get ready for therapy, meet with therapists, take part in part of therapy, put Adam for nap, relax with Adam (mommy time), get ready for dinner, all the while teaching how to request for things, to answer my questions, to discriminate between objects, make a choice... it goes on all day long... then at night, we have a new sleep ritual so that Adam can learn to self-regulate since his brain goes non-stop and he could otherwise stay up all night.

He plays around me now and waits for me to do something with him, circling my chair -- sweetie.

Max, Adam's 16 year old half-brother plays with Adam everytime he's here. It just comes naturally to Max...and last night at my mom's birthday dinner, we talked of Wills and who would take care of Adam should something happen and Max just said, "I'll take care of him." Just like that. No big deal. And I know he can and he would. And I know that out of anyone in the family other than my parents, he knows about Adam intuitively and he's seen what goes on day to day in this house. I know that he get's it. So Adam is truly lucky to have him. I am touched and even relieved to know that there is a person like this in Adam's life. I don't have any brothers and sisters, so this touches me to the core.

Wednesday, November 09, 2005

For many months Adam never took to teddy bears. He does not cling to a blankie or a bear the way we see many other children do. Other comfort objects have included books, and comfort tactics, stroking his belly or my arm.

Yesterday, I pulled out the many stuffed animals we acquired from friends and family over the first few years. Adam hugged them and really took to Elmo and Cookie Monster. He loves Elmo and I realized that when he becomes distressed sometimes he says "baby Elmo!" almost as if he's asking Elmo to rescue him -- it has that same intonation.

He couldn't get enough of Elmo when I pulled him out last night. We sang "Elmo's Song" together (this Elmo is a puppet, so I used him as such). We sang over and over and over again -- he kept passing Elmo to me and asking "Elmo! Elmo's song!" He sings the last words of a sentence -- I've been using that intraverbal tactic for some time. We did the same for "C is for Cookie" song. I thought I was going to lose my voice, but hearing Adam's voice singing and all that eye contact and joy between us, I would have sung 'til I dropped.

So I put Elmo and Cookie Monster to bed with Adam last night. He gave Elmo "five", kissed him. I'm trying to use them for pretend play and the development of symbolic thought. He didn't seem to have any problem with any of it accept that it was repetitive. He did Elmo first, then Cookie Monster and we kept going like this. I then tried to vary it each time.

Every week, it seems the lights keep getting brighter in Adam. He still needs his time to do his letters (I let him line them up after a session or in the evening). He needs to do what he likes and what relaxes him like us all. But I find when we balance between having to keep working on his engagement and his skills, and letting him be obsessive for a little while, he is a happy, balanced kid. I'm not trying to extinguish Adam's "behaviours"...I'm trying to expand it without taking it away, for to do so might result in a behavior that is more difficult to cope with. I have seen little aggression in him. He gets a little angry with me if I don't do what he wants or one day, if I don't take him to bed and he's super-tired. I find that if I acknowledge that he's frustrated, he is grateful and calms right down. It all comes down to respecting your child and reading them correctly. If we feel acknowledged and loved, we all do better in life.

I'm trying to always figure out his sensory requirements. He is squinting a lot these days and I wonder if all the visual stimulation (he is a visual learner), hurts his eyes, or if he's just checking out the world -- what it looks like when he squints. He does love to hold up his arms and flick his hands (he has found that it makes shadows) and I am trying to just replace that with something else. I find if I start saying "hands down," it just makes the action more obvious to me, to him and to everyone else. It's like Tourettes and I see how neurologically there is a connection -- the body does things unvoluntarily. If you tell a Tourettes person to stop, they have to "do" their tics even more. So I try to replace it subtlely by distracting Adam. Better to look at a book or play with something else. And at home, give him times to just do it. I find that all his "stims" just end up going away. Another one pops up -- they all come and go.

I've been optimistic these days. I said to another couple two days ago that I wouldn't change Adam. He is the boy I have and who I love. I still lay awake many nights thinking about all this, worried about other kids who have autism who do not have the resources to pay for therapies, schools -- people who can help them along in life so that they are less frustrated. I have a dream -- that awareness about autism can be raised to such a level where we can set up systems to enable them.

Sunday, November 06, 2005

Beyond Words: the drawings of Jonathan Lerman
-- Insight into an autistic mind --

Londale Gallery
410 Spadina Road
December 1-20, 2005.
Exhibition Opening: December 1st 6-10 p.m.

Jonathan Lerman is an artist with autism. He is unable to speak so we cannot ask what inspires him or what triggered him to suddenly begin drawing at the age of ten. Today, at seventeen, Jonathan is prolific and shows no signs of slowing down. He has been featured in the New York Times, on The Today Show. He is in high demand because,as an artist with autism, he draws faces with uncanny insight. Publicity is not something he’s keen about, says gallery owner Kerry Schuss, his representative in New York City who bravely took Jonathan on at the age of twelve – something his colleagues in the industry felt he was crazy for doing. “He has trouble with crowds and cannot stop moving around. When you see him, you might think he isn’t capable of anything.”

Lyle Rexer, who wrote a book about Jonathan and also How to Look at Outsider Art writes: “Looking at Jonathan’s work is an affirmation that he sees everything. Working with the assurance of Matisse and the speed of Picasso, and the humour born of a cartoonist, Lerman has created an unforgettable body of work. His drawings include portraits of actual figures as well as figures from his own imagination, and rendered with great acuity. These drawings overturn the stereotype of the so-called savant artists as an unchanging talent sprung to life fully-formed. Instead, Lerman shows the detail, the restless experimentation and rapid growth of an artistic sensibility.”

Lerman is first an artist, and second, a person with autism. His drawings refute theories that people with autism are “mind-blind”, in other words, cannot perceive emotions or understand that others have their own thoughts. It is unusual, in fact, to find an artist with autism who draws faces with the depth of perception that Jonathan does. It therefore shows that an autistic person can have enormous capacity for perception.

As art, Lerman’s drawings stand alone. They draw the viewer in like a good novel and make us ask for more. We witness a beginning, where Lerman’s body parts are dismembered and then watch them come together like a recognition of others and of himself. Associations are made (“The God is Wrong”) so that we wonder what meaning they have for Jonathan. Like the autistic artist Joseph Connelly who brings together multitple objects in his shadow-boxes, associations between objects holds great significance, again blowing the theory that autistic people have difficulty with symbolic thought.

Jonathan Lerman, like some other people with autism, is a person with a gift. Michael Fitzgerald, who writes about Autism, Aspergers entwined with creativity and genius writes: “Ever since the term autism entered the public mind, its perception has not been linked with genius and creativity. Rather, in the minds of many people, autism is associated with a very significant learning disability. A genius is a person with high ability, with or without autism, who produces a work that changes our view of a subject.” Is Jonathan a genius or a person with a gift? At seventeen and still going, we have time to wait and see.

As a mother with a young son with autism, curator of the show, Estée Klar-Wolfond wanted to use art to to raise awareness about autism. She wanted everyone to know that lack of speech and different types of behaviour do not indicate a lack of intelligence, but quite the opposite.

Through Jonathan Lerman’s work, we can begin to see that even the most affected people are capable of thought and a unique perception. We are viewing here a “different sort of person” and Estée hopes that by taking a view into Lerman’s world, we can begin de-pathologizing the phenomenon of autism and respect this community’s insights and abilities.

Proceeds from sales go to autism causes.

Wednesday, November 02, 2005

I have to write a press release for Jonathan Lerman's exhibit. Like most nights, I lay awake grappling with myself -- wondering how to communicate about him, and about autism, in a way that doesn't belittle his work. He is first an artist, and second, a person with autism. The interest in the show is autism, for sure, but how do I resist the sensationalization of autism? I think just by stating that it is indeed a struggle to avoid talking about autism -- I mean, those of us without it, are innately fascinated by the brain's functioning, and any other perspectives, like autistic ones, that help us to understand the enormity of human capacity.

Can someone with autism please write to me?