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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  

Thursday, December 29, 2005

I am in Florida and have had no time to write down anything...until now. Adam has been keeping me busy here...he loves the waves of the ocean, running up and down the beach (with a huge grin I have to add), and enjoys throwing sand in the water when not letting it spill from his hands so he can enjoy the visual part of this. He still jumps up and down and flicks his hands in the air -- his visual self-stim. It really is the most interfering behaviour he has. Everything else is manageable -- he doesn't stim to self regulate, he is easy to transition, enjoys novelty. We are lucky -- but I wonder how much of the work that has been done with him has helped too. I remember when he was so stuck on his routes and if we took one wrong turn away from the park, there was a major meltdown. So, we just kept breaking our routines to keep him flexible. One thing is for sure, as a parent, we have to endure the crying to move beyond the stickiness of autism -- the areas where our children find it either difficult to transition or can't disengage from something.

I have started reading When Babies Read: A Practical Guide to Helping Young Children With Hyperlexia, Asperger Syndrome and High-Functioning Autism, by Audra Jensen. She writes down everything as prompts for her child. Now that I'm getting into potty training with Adam, I'm going to try what she suggests -- putt9ng index cards around the house "I need to go potty," and at scheduled times, go to the card, make him say it, then take him to the potty. It worked for her child to articulate that he needed to go -- the most challenging part of potty training for Adam and I right now. In an attempt to get Adam to speak, my therapists want to pull back to one-word mands because Adam is chunking his sentences (ie; confusing "come here Flor" for everyone instead of just "come here"). This says that Adam doesn't truly understand what he's saying (the difference between the command and Flor's name in this instance). Yet, everytime I write something down, Adam understands what to do. I know it is still a prompt, but who cares? I want my therapists to really understand his reading capability to prompt and teach him. I also want Adam to learn to read before it's too late (the window begins to close at 4, apparently). Adam can read and decode words, but he can't do it with all words. He needs to be taught phonetics. Once he has this tool, then it is easier to teach him so many things.

Of course, I feel I need to jump all of this today, as the sun rises in front of me above the ocean. Ahhh. But I think I'll hold back a bit and just use a card here and there this week. Adam is on his vacation and I only want to help him enjoy it.

Check this out:

Sunday, December 25, 2005

It's Christmas Day and Adam has gone for a long walk with grandma. We are off to Florida tomorrow to see Bubby and Zaida. I know Adam will love it. Now that I've taken him off milk, I notice a difference in his language again. He is speaking more and is much more attentive and intentional in his communicative gestures. Either it's just a coincidence or it's the milk that aggravated him. I'm letting him relax this week -- enjoy the sounds and smells of the ocean, the feel of the sun.It is so grey and damp here in Toronto -- it also dampens the spirit.

I was up until 4 a.m. last night. My head keeps spinning. This time I was thinking about how much all of this therapy costs us a year, and all the other families who struggle to afford it. My girlfriend, whose child is recently diagnosed ADD, is going to put her son on Ritalin. After all her research, she determined that it was the best thing for him. She said to me, "imagine if Adam could take a pill in the morning..." I did imagine it. It did seem easier. I admit it. If it would make him less confused about his envrionment, then I imagine he would want it. I don't know. These issues, and the bioethical ones I've been thinking about, are not easy.

Our kids need the therapy. Our kids need the research. Autism is the most underfunded area of research, yet it effects so many children. While debating many of the issues, I never want to undermine the research -- it helps us understand the functions of the brain, autism, and if we are wise, we must always struggle with issues surrounding tolerance and disabiltiy, ability...

Adam is doing great again. He has figured out how to jump from high surfaces into the pool or into beanbags -- something he could not do before. He is speaking more and I am determined to help him to read more -- as he does it naturally and I believe this is a gateway to more learning for him.

Friday, December 23, 2005

In the dark hours of 2 a.m., my son asleep at his grandparent's place, I twirl my hair obsessively whirling thoughts on my pillow instead of closing my eyes. It is yet another sleepless night when tomorrow morning I have to meet with a new school for Adam. Instead of just thinking, I kept the promise I made to myself many a sleepless night ago to just grab this computer and write the damn stuff down.

I entertain thoughts of the salsa lessons I always wanted to take, maybe a hip hop lesson or two -- to get connected to my body again -- this one that is sagging just a little more than it used to -- a far cry from my fitness instructor/modelling days of my twenties -- those jobs I juggled while going to school. Now, when I get work, my mind disconnects from the body and while it reels, I feel more tired and sluggish. It's all about time and paying attention to these things of health and vanity. Like Emmanual Kant, I consider the rituals of daily walking, at the very least, to stay connected to myself and other possibilities that surround me. Walking, for Kant, prepared him for his daily writing. I truly love being immersed in work, but I also long for a kind of freedom I once had -- smoking cigarrettes on my window sill in Freiburg (I've long since quit and can't stand the stuff), luxuriously writing down poems, stories and diaries of worries that now seem sensual and sometimes, just plain trivial in the grand scheme of life as it is for me today. That is what youth is for -- all of those wonderful experiences that prepare us for the life ahead -- the life of giving another young person the same opportunities. Marriage for a woman should definitely be put on hold until at least 30. There is so much wonderful living to do before we have children. Then, at least when we have them, there is no real unknown or imagined life. Only the reminisced one.

I believe I also can't sleep because Adam isn't home. For all the work our children bring, we miss them so when they go out. Everyone I talk to seems to have the same experience. Love is truly built out of all the tough steps of life -- and sometimes,just sticking together. It amazes me, because remember I only have one child of my own, the infinite love I feel for Adam. I wish, sometimes, I could have more children, but Henry has 5 and he's done. I respect that and now that I'm getting older, I feel I am done too. Adam can get the benefit of all of me instead of a sibling. I was an only child too. It just is what it is. Is there any point living the imagined life?

Thursday, December 22, 2005

As I've been calling schools -- and the ones who might take Adam (there are only 2 that integrate) -- I've come to the conclusion that I, and my therapists, must do more to prepare Adam for the basics: ability to sit and attend. Schools consider it a disruption to the class if children are wandering around. We really have to push him harder and I have to give him a little more "tough love." I suppose I am terrified at any other option and I feel that he has so much to offer it would be ashame if he couldn't get into one of the integrated schools.

Adam is downstairs now in his facilitiated play group. Two other boys in the group are also autistic -- but they talk and attend more. It terrifies me. I wonder why Adam doesn't talk and interact as much as they do. I hear him crying. He does not want to be down there with those kids today. But he has to be. There is no other way through this barrier than to push him. When he begins to interact more with other kids, and talks to them, I will be so happy.

Wednesday, December 21, 2005

Helping or Hindering: ABA cases and it's role in discrimination of autistic children. That's the topic I will write on soon. Keep checking in for it.

I've called OISE at U of T. They too do not take kids with autism. Everywhere I ask,we get turned down. I keep asking myself why? With all the legislation to provide equal rights to education, WHY? I know we can't legislate prejudice away, but maybe it's a step in the right direction. Without legislation and advocacy, where will our children go?

I am disappointed with the ABA schools -- I called Montesorri School for Autism -- and although it's director is so very nice, and she wants to integrate, she is new and her program only services half-days for kids with autism. So too, it is too specialized. The goal of integrating is not yet achieved here.

We need a small school to start the model for integrating autistic kids -- providing enriched programs and IEPs (Independent Education Plans) to service everyone from the gifted to the delayed, while keeping them together. In such a school, the neurotypical kids can build their self-esteem by learning to help and teach those that require extra assistance, thereby building a future model for tolerance in our society. In autism, where expression is largely different or difficult, I truly believe that exposure is also important. We must never underestimate the cognitive abilities of autistic people. Just because the manifestation or output is atypical, it doesn't mean that autistic people aren't absorbing everything that is presented. We need a school that honours this while providing supports so that people with autism feel empowered and can build their self-esteem. I am shocked how we are being turned away at every school. The alternative is that I do this myself -- and I already have people ready to jump aboard. It will have to start small, and as I said, the model will be built so that it can be supplanted to other schools. What I envision is a plan that will finally make Ontario legislation for inclusive schools possible, successful and efficient.

As for the piece I am preparing on ABA cases, I believe the plight of parents is the same as mine-- the struggle to educate our autistic kids. I don't believe in the slow-paced approach and isolation that ABA programs cultivate (most therapists won't expose kids to new things until the task is "mastered" -- thereby totally viewing the typical response as the means to the end). The main and big difference is the legal argument used -- constructed with semantics like disability, inability and dependence -- the view that in the end, strips away the dignity of autistic people as people who want to be independent, are abled, require special assistance, but also have equal rights. When I get frustrated with autism, it is my problem, not my son's. This frustration is built from years of my growing up NOT exposed to different people. Now that I've learned otherwise, I believe we must grow and nurture a youth that wills support and include our kids in society.

Tuesday, December 20, 2005

Yesterday, I was frustrated. So Adam demonstrated what he could do. Here's a little note I wrote to all of Adam's therapists this morning:

It is interesting to note that Adam does not stim at all during art activities. He is focussed and engaged. This tells me that he enjoys the visual stimulation of art and that he is desperate to learn. Morgan always plays classical music while he's making art. Adam loves music too -- all of this is a great gateway to learning, language and socialization.

Here's a little story of what happened last night: As you know, Adam's stims have been up this past week or so. His attention has been challenged (seemingly). I've been teaching him how to dress himself intensively this week. Last night, before bed, I took off his socks and threw them over the bed adn onto the floor. When Adam was playing on the bed a little later, he spotted one of his socks. He focussed on it, got off the bed, grabbed it, came back on the bed and laid on the pillow and began putting on his sock. He said, "sock!" Every time I worry, he gives it to me. He lets me know he's paying attention, even though it doesn't look like it and he can frustrate me. There is no doubt that he has to learn what's appropriate by learning to pay attention -- especially in the classroom or with other teachers. But then, Adam teaches me that even though he doesn't look attentive, he is paying attention. Sooo, I wonder if this is a fine balance of moving along with programs and EXPOSING him to lots of things even when you think he hasn't mastered it, even if done incidentally before formally. Because of lack of attentiveness, I believe that kids with autism could be held back needlessly because the rest of us think they aren't learning. I sure hope that Jonathan and Adam have demonstrated that this is not necessarily so.
Adam always gives me these surprises, just so I know that he's with me.

Now, I have another good story after all the disappointing school calls I've been making: Eric from Crestwood Valley Day Camp. I had a long conversation with him and have enrolled Adam in his camp for 3/4 days. He wants Adam and asked all the right questions and wants to keep him challenged while recognizing his needs. It was a relief to finally talk with someone who cares and gets autistic children. We talked about the challenges of finding schools and he suggested Willow-wood. I will have to check them out. Apparently they have dond a nice job with integration, even though they started out as a more special needs school. So too, I will be meeting with Gail Baker of The Toronto Heschel School to see if she would be amenable to my starting a program there that would work for autistic kids. The goal really is to keep them integrated. I know Adam would do well there, and it is not fair for us to discriminate against him, and children like him, just because we think they are not paying attention. Not when he will actually get something from the experience, even if it looks different the way the rest of us acquire knowledge and learn. I think this just about sums it up. If we truly appreciate the way the kids learn differently, the way they need to be with other kids of all types, perhaps we and teachers will learn to appreciate their unique style of learning and being, and never underestimate them again.

So I am sorry I said I hated autism yesterday. Like us all, I have moments of frustration and self-doubt. It lasts about an hour, at worse, a day. I'm just trying to be honest here. Otherwise you might think I'm not real. And boy, this is REAL.

Saturday, December 17, 2005

Consider these thoughts from Paula Kluth on Inclusive Education:

Some parents and teachers assum that some students with disabilities cannnot be provided an inclusive education because their skills are not similar enough to those of students without disabilities. This is perhaps the most common misconception about the law that exists among families and teachers. Students with disabilities do not need to keep up with students without disabilities to be educated in inclusive classrooms; they do not need to engage in the curriculum in the same way as students without disabilities; and they do not need to practice the same skills as students without disabilities. In sum, no prerequisites are needed for a learner to be able to participate in inclusive education....students with disabilities can participate in general education without engaging in the same ways and without having the same skills and abilities others in the class may have. In addition, this example highlights ways in which students with disabilities can work on individual skills and goals within the context of general education lessons. It is also important to note that the supports and adaptations proviced ...were designed by teachers and put in place to facilitate a [particular students'] success. [A special student] is not expected to have all of the skills and abilities possessed by other students in order to participate in the classroom. Instead teachers [can create] a context in which [a student] could "show up" as competent."

Although understanding inclusive education, the laws related to it, and practical strategies are important, nothing is more helpful in learning about inclusive schooling than doing it. Teachers in today's schools must make a commitment to value the participation of all and to work toward good inclusive practises every day. It is my hope that readers will understand this chapter as a call to action, begin to see inclusive schooling as a verb, and help students with autism gain access to inclusive classrooms and educational experiences.

Perhaps the most important reason to pursue inclusive education, however, is to provide all students with an education that respects the diversities they bring to our schools. As one teacher commented, inclusive schooling is not for about students with disabilities, it is for and about all learners. `I don't call it inclusive because of [my students with autism]. I call it inclusive because ...I am a teacher of all kids.' (Kasa-Hedirkson, 2002, p.145)"

By moving towards inclusive education I guess it is political. There is no way avoiding it, I have moved into action. Everyone I talk to doesn't understand inclusive education or understand that special kids can integrate into the classroom. Money, resources, training, all come into dialogue. What it requires is a change of heart and mind - thinking out of a very narrow box.

Friday, December 16, 2005

To open a school or to create a type of Outreach Program to integrate one or two autistic kids in a regular classroom -- with well trained teachers and with a flexible and open school staff -- that is the question today. If I could do this in one school, then perhaps it could be used in others -- and the legislation that exists for inclusive education would be much more effective.

I am so concerned about schools. I am talking with my friends today who are experiencing the same plight as I am, but they are two years ahead of me -- schools who turn their autistic kids away, schools that turn us away without being blunt about it. There is no place for them, and now there are so many children with autism. How many more years is this going to take?? Even schools who teach the learning disabled don't want the autistic kids, because the social component is difficult to teach and deal with. Then there are the ABA schools, and there are lots of parents like me who do not want our kids there. I do not want exclusive ABA all day long for my child.

Where integration would help my son, with extra assistance, it remains elusive. Will continue this later...a ladder has to be put into my office library now...

Thursday, December 15, 2005

For those of you who were looking for the segment on Canada A.M. yesterday, it has been postponed to air between Xmas and New Years.

In the meantime, I have refocused on Adam again. He is so cheerful these days. But I need to do more to make him talk and become more independent. Nannies and loving grandparents just put food in front of him and don't give him choices. In a rush to get to school, we don't give Adam enough time to dress himself. We are not giving him opportunities to discover, try and make mistakes. When he's pushed, he does so well, but it does take a great deal of patience and budgeting of time. There is a price to doing exhibitions and writing books -- the price is less time for my Adam.

I went to The Alan Waldorf School yesterday, which is not the school for autistic kids. They claim to be co-educational, but after inteviewing a couple of schools now, I can see how talking the talk and walking the walk are two completely different things. The principal said they would take him but I couldn't talk to a "remedial" teacher (hate that word), until I paid the $100 deposit for registration! She went on and on about how the school "taps into the energy of the universe." Medieaval penmenship is a requirement as well as drawing for every single subject -- the student notebooks look like artifacts but I wonder how much they are actually learning. I asked that principal if a child with motor difficulty could use computers. There was no flexibility -- the penmenship seemed more important than the content. We all know that it doesn't matter how we write, it matters that we UNDERSTAND. In this school, every teacher looked like a hippie -- one teacher may teach Sanskrit while yet another teachers about the Saints and yet another into gnomes (yes, it's true). So when it came right down to it, she said, while using her fingers as quotation marks, that "so called high-functioning autistic children" may not be able to move too far in the school, to which I wanted to reply - why would they?

Discrimination abounds. It is disguised which is the most disgusting kind. It is disguised by principals saying they are "open" to having children who are different, but really, they are not and push you away with rigid programming and lack of flexibility. It is disguised by friendly voices, and the hiring of "remedial staff" and "educational assistants," most of whom know nothing about autism. As parents, we are invited in for tours just so those schools can't be blamed for being prejudiced. As parents and autistic people, we are pushed to the margins so that others do not have to deal with us and our children.

What kind of society are we? THIS IS NOT GOOD ENOUGH. I want to expose all this ugliness and each and every school I encounter that does this to us. I want to tell you of all the good I find in the world as well, so that gets more exposure in the end than those ignorant people that run schools like The Alan Waldorf School, The Willow School, and The Mabin School -- all who have turned us away with disguised discrimination. (The Mabin said to us that there is not enough room in the classrooms for shadows). At least the Willow School -- who told us they have one autistic child as a favour to someone they know -- said straight up that they don't take autistic kids. In the end, ignorance about autism is no excuse and furtive discrimination for those with any special needs is akin to any other kind of racial or ethnic discrmination.

We have schools that are fractionalized, even an autistic community within itself, divided in what we believe is good for our children. There are more schools popping up for kids with Learning Differences. The Public School system tries to integrate and I still have to look at the ones that have been recommended. Discrimination abounds but it always takes me by surprise. I mean, my son is beautiful in every way. I am always shocked that he, and other innocent children like him, are subjected to such naivete.

I believe that we parents are given assignments. Every child requires something. There is a great irony when I hear another parent complain that their otherwise unscathed child is not developing the way s/he likes -- I marvel at the luxury of that complaint.

And yet everything about Adam is a gift. He has taught me to slow down, to appreciate every single step. He doesn't lie, he is not greedy like some other children. Buying him toys where other children would become spoiled does not effect Adam in the same way. Toys are his tools for learning -- much more so than non-autistic children. I see him playing with toys and exploring him in a way that a one year old does easily. Where other parents get caught up in which Ivy League School they would prefer their kids to go to, what cars to buy them (my husband does this with our other kids, so I see it in my own household!) I will receive simpler and what I think are richer gifts -- the gift to learn what it means to be human -- of patience, kindness, of frustration and triumph, the pain of isolation and the utter joy of when he will gain a friend, or even a girlfriend one day. When Adam celebrates his Barmitzvah, it will be a momentus occassion -- instead of getting caught up in the carnal hype of the party -- the party will be woven from the painstaking steps to get there -- and those are the best parties of all. Happiness really does come from the simple things that the rest of us take for granted. From talking and reading other parent accounts, I am preparing myself for the future while also taking in the moments as they occur. Moments of bliss are constructed of painstaking work. I can't write naively about the joys of my son without discussing the pain and frustration which is part of the package.

So I do worry that Adam isn't speaking like his fellow autistic peers. I consider it my fault because he is capable and I'm still doing too much for him. So I do get tired sometimes, impatient too. I make mistakes. All one can do in life is keep trying.

Friday, December 09, 2005

The best has happened - the show now has a life of its own. The Toronto Star covered it to a point beyond my expectations. I was on CBC Metro Morning and Global TV and tomorrow we're on Canada A.M. And this is all to raise positive awareness about autism. There is a steady stream of visitors to the gallery making comments in the guestbook like "this is a very important exhibition." I think so. I believe that awareness does change the world one tiny step at a time.

I believe strongly in inclusive education and changing the way we view people with so-called "disabilites." I am currently researching models around the world of inclusive schools -- they don't take the resources and the money that we think they do. And they are so successful in other countries. For reference, take a look at Inclusive Education sites online and the UN Convention on The Rights of the Child, tthe UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities and the UNESCO Slamanca Statement. These documents recognize the human right of all children to inclusive education. Also there is The Ontario Coalition For Inclusive Education.

I am pressed to get back to Adam's programs now. I am concerned that he his displaying some inconsistencies, which may tell me that we have to cut back on some of his programs in order to refocus on some missing component skills. I always feel that if I take my attention away for too long, this happens. It must be a parent's inclination to feel like they are never doing enough. In particular, Adam is having difficulty with making choices. Instead of consistently saying what he wants from two items, he echos both items, or says the thing he doesn't really want (he gets the broccoli and he gags!). We try writing out the sentences (which he likes and can read), but it's not helping with the concept of making the choice. So his SLP at school will give him a blank item (piece of paper) and the item of choice, and repeat it until he grasps the concept. Laura is giving him just the two objects, and that still seems to be the best option yet.

Also, the Neoprene Vest seems to be helping at school. When Adam is motivated, he is so focussed and attentive, but when he's not, or if he's tired, he just keeps moving around. He is seeking out a lot of deep pressure these days -- crawling under pillows and asking for "squish." So the vest gives him some pressure and he seems to enjoy it.

His OT wants to try having a visual box -- a box consisting of visually stimulating toys that he can play with 5 times a day for a limited period. She wants to do this to fulfill his visual stimulation needs. She finds that the visual distracts him the most in the classroom. Although he is easy to redirect and focussed and attentive while doing something, if left to his own devices, most (not all) of the time, he would be looking around the room. I am wondering if the visual stimulation will over-arouse him or fulfill the need. Everything is a test.

He was so tired this afternoon, my Adam. This morning he was so affectionate and snuggled into my arm making the sweetest sounds of contentment. This afternoon, he nested his little head into the crook of my arm and fell asleep. Such a far cry from the days of nursing himself to sleep -- a far cry from the child weaned only two months ago. I tried weaning him for months (years, actually). I tried giving him a bottle from the time he was an infant. He would have nothing to do with it! Then, one day, I decided to try again -- this time with a glass of warm chocolate milk (just a pinch of cocoa for the taste). It worked because he was ready. It didn't work a year ago, or the year before that. One just has to keep trying. One worries so much about all of these steps. Then when they are accomplished, the struggle to get there is easily forgotten. That part amazes me. How we quickly forget the effort. This is the kind of effort an autistic child must make every single day.

Friday, December 02, 2005

I am marvellously tired. The opening and autism awareness event went as good as I hoped -- everyone seemed touched by Jonathan and floored by his work. We had over 200,maybe 300 people attend the opening! It was on Global TV. Friends who believe in me, admitted they were not expecting work of this calibre. I can understand -- what one might expect when you talk about raising awareness for autism is a nice little exhibit of student calibre work -- wonderful expressions of the human spirit, but still, not necessarily excellent works of art. That's the other reason why I picked Jonathan for this exhibit. Just like you and I, autistic work can be good or average. Why I picked this work is not only for its intense emotional conveyance, but for its artistic excellence - simple strokes of line that, like a well-written sentence, becomes loaded with feeling and innuendo. By picking good art, writing, music, the message is clear. The message about what is possible for autistic people is clearer. Like the rest of us, we trascend the burdens of life in the works of Mozart, Van Gogh, Picasso, get the idea. Most people intuitively know the difference between great and average, and we seek the former in order to see ourselves and all that we can be. We rather fly freely in the simple sweeping air, than become snarled in confusion. Jonathan's work is simply that: lucid.

The evening was crowded, filled with the music of Rosemary Galloway and the Norm Amadio trio. Wine poured while everyone marveled or quietly took in the panels I installed, "The Voices of Autism: In Their Own Words," and contemplated. People commented how overwhelmed they felt. I was overwhelmed that they were overwhelmed, and I said it. I was excited that the audience related so well to this show, and yet grounded in my passion to express my belief in the abilities of autistic people, of my son. These expressions, the work, is easy when it comes to one's child.

Dr. Roberts spoke eloquently and it was wonderful how she shared the humour and the poetry of her autistic clients. Alan Lerman was incredible -- his dedication to his son was so apparent.Jonathan wore his headphones to muffle the sounds and greeted everyone with a hand-shake and asked lots of questions about the people he met -- names, where they were from. He asked my husband Henry, "why don't you have any eyebrows?" and Alan commented there would soon be a painting or drawing of him!

Jonathan insisted on staying until the end. He basked in the limelight and I was so excited for him. We stopped at Shopper's Drug Mart on the way back to their hotel (Jonathan's lense popped out of his glasses), and Alan ran in. I asked Jonathan, "Do you want some music?"

Pause. "Yes"

"Do you like classical music," I asked, twisting around to watch him.

Pause. "Noo!" An emphatic negative from a typical teenager in the backseat, in the dark.

"How about rock?"

Pause. "Yes." All was good now. I put on Q107 and on came The Doors.

"Do you like this?"

Pause. "Yes." He seemed calm. The flurry of the night ending as we rested on Cloud Nine. I thought I'd stop talking and let him relax, until he asked, "Are you sleeping?"

He was great. I could relate to some of this conversation with my son, as I teach him how to answer questions. He pauses as he needs more time to think about how he's going to answer, or what might be the right answer. I worried about speaking what I call "dumbspeak" to Jonathan -- that slower, more articulate way of speaking as if he can't understand if I go too fast. I worry I might be patronizing him, patronizing Adam. I can talk normally to Adam and now much of the time, he'll just do what I say, if it's a direction or I say we're going to do something. It's a hard call. Sometimes I have to repeat myself to Adam, to give him more time to process, and other times, its just as fluid as can be.

In the car with his dad and I, Jonathan would make comments, but mostly ask questions, or answer them. Coversation is more difficult, disjointed. His hand and his art are his dialogue instead. When Jonathan was younger, he didn't communicate. Now that he's older, he's communicating more. When he's older still, who knows? More still? Probably. People with autism often develop these skills later.

Caren, his mother, said to me today, that no parent should give up hope for their child. Autistic children need to be exposed to everything just like other kids, for you never know what they have inside them. She speculates that they would have never known that Jonathan had any artistic ability unless he had that serendipidous date with a piece of charcoal and paper at an after-school program.

I am glad that many people from the autism community came -- even the ones I may not agree with. I am terrible at politics and find it difficult to take extreme political stances in these court cases. I just can't agree with ABA and how they -- and this is a new one -- call it "the only life-saving therapy for children with autism." You gotta like that life-saving bit. Really makes a point, doesn't it? And yet there are so many parents I've met now who feel just like me. We see that therapies that focus social interaction skills help our kids significantly. Extracting from different approaches helps too -- I do a bit of behavioural conditioning in that we may use bubbles to get a response out of Adam that is more difficult to get -- but it's natural -- like giving a kid a lollipop to learn how to toilet train. In cases where motivation may not be as apparent to learn something, this approach can be helpful. But as soon as a connection is made, we don't rely on reinforcement, other than praise, for the sake of reinforcment. And we really don't use this that often because we taught Adam the joy of relating early on -- and that in itself garners his attention - something you need in order to learn. At the end of the day, children with autism benefit significantly from good teachers. Patient, knowledgable, willing to adapt to the child and his/her needs. It is not the teacher's agenda, but child's we're interested in. One can't learn, or learn the joy of learning and then become independent, if one doesn't feel the motivation from within. And to think that autistic children do not intrinsically have that motivation, some, any motivation within them, is to say that they are not human. Finding that motivation is the key to unlocking the learning process and the joy of living in the world -- something all autistic people are entitled to.

Even if at odds philosophically, we parents love our children. I hope the autism community can de-politicize autism so that we can get on with the business of helping our children -- seeing them as whole beings, accepting them for who they are, and helping them in areas of need as well as finding their niche in life.
Beyond Words: The Drawings of Jonathan Lerman
- Insight into an autistic Mind -
By: Estée Klar-Wolfond, M.A., Curator

There are many myths about autism. Perhaps because there are so many pieces of the puzzle, so many areas of the brain that are affected and are still being studied, that it leaves room for too much speculation. As a result, we take the view that people with autism, and their behaviors, are a mystery to us. Like aliens or foreigners, we watch their behavior with bewilderment, and sometimes fear.

This view is a danger to people with autism because so many people are affected. Currently 1:166 children are diagnosed with autism in Canada and it is most diagnosed after mental retardation and cerebral palsy. The condition affects communication, socialization, perception and movement. Its symptoms can be mild or severe. Children with autism are treated all to often for their behaviors and not the core of autism, which then reduces their self-esteem. Too often, we hear that we are seeking to CURE autism, when many autistic people say they do not want to be cured. While one opinion may not reflect another, it does alert parents that we must be careful of whose interests we’re purporting.

Michelle Dawson, who was profiled in Canadian House and Home (2003) is a letter carrier in Montreal who has autism. “She laughs easily, reads voraciously and takes pride in her perfect work record. She has language problems – she’s not sure if she really understands the words she uses or if she just memorized how to use them. She says, `I really like books, but mostly I like looking at the words. But having read the same stories over and over again, I have them in my head and use whole sentences from them.’ She says that because of her quirks, people may judge her to be weird – unfairly, she states, `because its much like judging a blind or a deaf person while not acknowledging that the person is blind or deaf.’ Michelle is adamant that people like her be judged for who they are and what they can do, and not some behavioral standards developed by so-called “normal” people. `What’s wrong with being autistic?’ she asks. `Why are we considered to be so disastrous? Why are we such a mystery? I think we should be allowed to be who we are. We work hard, we’re honest, and we contribute a lot without getting much back.’ Michelle wants people to understand that it’s not easy having autism in a non-autistic world. `I think people should recognize that the entire burden should not be on us to be like them, but rather, to acknowledge how hard it is for us.’”

Autism is not really a mystery. At the core, people with autism are like all of us – they need to be accepted for who they are, to be happy, to have fulfilling work and to be loved. As a mother of a 3 year old son with autism, I feel strongly that he, and others like him, be integrated in a regular classroom – as integration in the school sets up the foundation for a democratic society where no one person with special needs be marginalized. Consider this from a severely autistic adult:

All my life I was enrolled in classes for the profoundly retarded. The pain of that isolation, I can’t describe. Some classes consisted of putting flashlights together and then they would be taken apart for the next day’s project. I never spoke or made eye contact. I hummed and self-stimulated. No wonder they thought I was hopeless. I was always treated well but my intellectual needs were never addressed because nobody knew I had any intellect at all. Sad to say, many like me remain in that same hellish situation. (Treacy, 1996, as taken from Paula Kluth, You’re Gonna Love this Kid: Integrating Autistic Kids in the Classroom)

When Jonathan Lerman was 2 years old, his parents state, “he slowly began to slip away.” A formerly alert and cheerful infant, he now wouldn’t respond when his parents called out his name. “The few words he once knew were gone,” they write. “He would tear his hair out in clumps when he was upset. And although we longed to comfort him, he resisted our attempts. It has long been widely believed that children with autism do not comprehend emotional states of others and, indeed, may be extremely limited in their ability to understand or experience their own emotional states. For many years, we assumed it was so for Jonathan.” Then, one day, when Jonathan was ten years old, his parents received a phone call from he school. Jonathan began drawing – “not stick figures and crude backgrounds,” as art historian Lyle Rexer states, “but parts of eyes, mouths, stylishly rendered. In a short time, he was drawing entire portraits, some from life but most from personal 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” (Lyle Rexer, How to Look at Outsider Art, pp.64-5). That was written when Jonathan was twelve years old. Today, at eighteen, Jonathan has demonstrated that he, as reflected in his art, is growing through varying representations of people, their interactions and positioning. He also paints and sculpts. The Lermans write: “What does Jonathan’s talent mean in the larger scheme of things? We believe that Jonathan, through his work, teaches us that we must open our eyes to the world of people with autism. He is helping us expand our knowledge and transcend our beliefs about their perceived limitations….Jonathan may only be one person with autism, but we have no way of knowing that other people with autism do not experience a similar degree of emotional connection and simply lack the talents to express it.”

Jonathan’s work has been categorized into the Outsider Art genre – which refers to self-taught art. The critical art world has begun to take it seriously, people collect it, and its market is far-reaching – he is quickly becoming and “insider.” Perhaps Outsider Art has gained status in the art world because as in modern art, let’s use Jackson Pollock or even Vincent Van Gogh as examples, artists are regarded just as much for their psychoses as for their art. The human mind and its manifestations are intrinsically entwined. As I researched and studied creativity and autism, learning about Henry Darger, Joseph Connelly, as autistic artists, or other gifted minds such as writer Lewis Caroll, or philosopher Ludwig Wittgenstein, scientist Albert Einstein, or entrepreneur Bill Gates, those whom I call autism celebrities, I was staggered when I came across Jonathan’s faces. To-date, I have found no other artist with autism like him, who perceives humanity with such profundity. It now becomes impossible for you to leave here today, carrying the myths in your mind that autistic people are rendering machines – only capable of quick calculations and are robotic in the way they live upon the earth. This is why I eagerly wanted to share Jonathan’s work with the Toronto community. Finally, we begin to see visually what is possible. We can see for ourselves that he registers and feels intense emotion, that he has an incredible intellect despite the way he functions. But perhaps, if we were to only consider the surface of him, we would be unaware of it. This is Jonathan’s way to let us into his world. It is his way to self-actualize. By looking at his work, we must then consider how every “disabled” person in the world may have a vibrant inner life. It can be a painful thought, as we who are abled find it difficult to consider a body without movement to be anything other than a quiescent being. The rest of us have not experienced the awesome malleability of the human brain and spirit -- the human ability to adapt to the environment no matter what area of functioning may be impaired.

We know from research by Dr. Patricia Czapinski that anatomical issues may be a factor in facial expression in some autistic people. We know that registration of intense emotions may make eye contact difficult for people with autism. Sad to say, that when we don’t see affect from some autistic people, the inference is that autistic people don’t have emotions. I hope you are now convinced that this is nonsense. What friends and family can do is to speak to an autistic person with respect, directly to them as if he or she is listening, with emotion towards them because they are human and need you. As a mother, I want you to understand that my son, and people with autism have physiological and neurological difficulties with things that the rest of us take for granted.

I don’t really want to bore the reader with the construct of our day. There are many parents of autistic children who live it the same way, more or less. But for those of you unfamiliar with this world, I might be remiss to leave out at least, its essence. Our day is filled with teaching, of learning HOW to use a toy, to put on a sock, to play with a friend, to answer a question, to feed a doll, trying to peddle a trike while steering, or clap hands to a song on cue. Once the how is learned, Adam begins to take off. But the learning is deliberate – step-by-step - and a great deal of patience and understanding is required. Days are filled with therapists coming and going from our home, Occupational Therapists, Speech-Language Therapists, therapists who teach cognitive, social and self-help skills. Weeks are spent organizing of team meetings, programming, more research, advocacy, meeting with nursery teachers, and for us soon, meeting with elementary schools and trying to find the most flexible ones. Adam, and children like him, works hard to learn about their world and function within it, unlike other kids who learn naturally from their environment. Days are filled trying to understand and assist Adam’s sensory requirements as he flaps his hands above his head because he needs to, or wants to be squished underneath a pillow in order to relax. For other parents it may involve dealing with seizures and medications, or episodes of frustrated aggression. My days are spent with endless worry about the future (no matter how optimistic I try to be) – of whether my child will be accepted or bullied, and wanting to protect him from the pain and isolation that discrimination may bring.

No one child or insensitive person will be able to beat the autism out of Adam. Autism is a way of being and experiencing the world. I hope to teach him that no one person can beat his spirit. Autism is so pervasive that it affects the way one moves, feels, and sees. It affects all the senses. My husband once asked the question of “why do therapy if the goal is not to cure autism or make Adam appear less autistic?” to which I responded that the goal for Adam is to understand his world, to learn how to communicate his thoughts and desires, to self-advocate and self-actualize and in essence, to feel fulfilled. Adam is a partner in his own therapy as we learn to respect the way he sees the world while helping him to communicate his own thoughts. It is an unfortunate fact that we feel less valued if we can’t communicate and then get left behind. I uphold the belief that if we build supports to set children up for success, even the most affected can be fulfilled. Autism is as much a social construct in that we do not yet provide enough opportunities to enable self-esteem or identity.

Research, as done by Dr. Wendy Roberts and others around the world, helps us identify early markers so we employ interventions as early as six months of age. We can begin working on socialization and pragmatics earlier which has proven to be beneficial. Thanks to research, some of which becomes refuted or improved by more research, helps us understand the inner workings of the autistic mind. It helps me as a parent understand and empathize with my son so that I can be a better parent. I call upon everyone to support research that enables us to provide better therapeutic interventions.

Upstairs, I have created a wall called the Voices of Autism. These are the people who can talk or write about what it feels like to be autistic. Like all of us in this room, we have different talents and capabilities. Some autistic people are artists, musicians, writers, computer programmers, scientists, bus drivers, professors, doctors, and others have a more difficult time, being in need of extra care.

I am only one parent of a young autistic child who wants to raise awareness so that my son can reach his potential with less discrimination in the world. I am adamant that he not be forced to live in the margins of society because people do not understand autism. But it is those with autism who must also step up to the plate and speak, or draw, communicate in some way on their own behalf, and our responsibility as parents, fundraisers, teachers and scientists to make way. Autism may sometimes be beyond words, but the voices, both reverberant and real, continue to fill my head. May the collective voices of the autistic community become loud enough for us to hear what it means to be human so we can build a more tolerant society.

Estée Klar-Wolfond, M.A.
Curator of Beyond Words: The Drawings of Jonathan Lerman
December 1-22, 2005.
Lonsdale Gallery, Toronto.