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Autistic Freedom

Filed Under (ABA, Ableism, Acceptance, Activism, Advocacy, Anxiety, Art, Autism and Intelligence, Autism and Learning, Behaviours, Communication, Computing/iPad, Contributions to Society, Development, Language, Law, Movement Disturbance, Obsessions, Parenting, Politics, Safety, school, Sensory Differences, Transitions, Wandering) by Estee on 26-06-2013

I’ve been thinking and planning with Adam’s team the next stages of his learning and doing our map project. Every once in a while, I got down the dark whole of blog comments and blogs that consistently regard autism, even its many complications and struggles, as inherently “bad.” The issue we have with thinking in these terms, although safety is an ongoing concern for many parents including myself, is that we think we can shape behaviour without truly understanding it, and that what we are talking about is bad behaviour. Behaviour is something that we can control, impulse and many disabilities are not constituted by the will of a person. So when we talk about shaping behaviour and “positive” behavioural support, we always have to question our subjectivity and how we’ve come to make sense of autism.

Given many of our children are not provided access to alternative communication support, and cannot tell us otherwise, and that it takes time and care for many autistic people to learn how to communicate (if they can), the Antecedent, Behaviour, Consequence (ABC) mode of tracking behaviour will remain problematic, and the very recognition of that can be helpful. There are often too many conflating factors that precede a behaviour so, while we do our best to interpret it, it is always difficult to claim one cause. Here I find that I’m needing to ask many different players in Adam’s life for information so that I can cobble together the best interpretation I can, bearing in mind that this is merely an interpretation.

So with recent events and noticing Adam’s propensity for visual memory, needing to know his environments, I continue to study maps and autistic art and will experiment how this might be useful for Adam. This is another example of the visual map I found by an autistic artist found at Drawing Autism: 50 WAtts. It’s part of my interest in helping Adam draw his own maps as a way of understanding his own environment. This means, I have to be careful how I enable and support him, and be in a continuous reflexive state of mind in terms of enabling versus prompting him which would therefore NOT be his own communication.

Felix: Imaginary City Map, Age 11

Here’s how the artist responded about the work:

What was the inspiration for this piece?

Generally I start drawing one street on different spots on the edge of my paper. I make the streets grow toward one another.

Who are some artists that you like?

None. I study road maps and atlases in detail and generally I scroll the full track of our trips on Google Earth.

I turn now to education in hopes to keep honing in and improving it when I think of Adam’s needs. Under the rubric of the Medicaid system in the US – a system that is already in existence – advocates seek more, or varied, habilitative services for autistic individuals. This is an important beginning within an existing system and we have to keep discussing the medical model and its effects on the way autistics are included and regarded as full citizens, or not, in society. In Canada, we also require more choices that fit with parental values and wishes for their autistic children, and this was addressed by Doug Reynolds in his paper for Autism Ontario: Looking Forward: Has Intensive Early Intervention Hijacked the ASD Agenda? The work of autistic people in this is valuable in how I think about Adam and his education and the extra supports and help he needs. Bear in mind, I write here a blog post, not an essay. Here are some of the ideas that I think about that I have not yet formatted into a paper.

To go on, if a parent wants an education for their autistic child, they should be able to work with a school to attain it using some key principles:

1) Respect for autistic identity and personhood;
2) Understanding learning at one’s own pace and an acceptance of it (as opposed to a linear model for learning and development);
3) Understanding and completion of complicated sensory profiles and the time it takes for accommodations to be put in place and,
4) recognition that accommodations frequently change and must remain flexible;
5) Recognition and acceptance of family-hired (which could fall under a direct-funding model from government support) support workers as reasonable accommodation in classroom – for transitions, programs, to help with accommodations and if needed, supported communication and whatever accommodation an individual and family might need to enable success;
6) Transparency by schools – to allow parents in for observation, to review class binders, etc. Considering many of our children are non-verbal, it would be good to not only communicate in binders, but to allow drop-in visits (even if a bit of arrangement is needed to respect others). This enables open-hearted communication and better accommodations.
7) Communication aides and technology and access to supported communication and devices as legal right to communicate as autistic people. As an example, an ABA therapist will often say “use your words,” thereby implying that an autistic child is stubbornly with-holding them. Considering the levels of frustration an autistic person has when they cannot communicate, do we not think they would use their words if they could?);
8) Recognition that most autistic people we name as “inconsistent” and “discontinuous” or “having regressed” is often a result of sensory issues and transitions, and that learning happens at unexpected rates. Sometimes, the teaching agenda must be put aside when an autistic person may seem “disregulated” and build back tolerance. An autistic person can often jump several grade levels in reading, for instance, and then appear to have regressed. This is not necessarily indicative of a regression so much as a need for a body to regroup. Therefore,
9) testing autistic people academically so they can advance grades must happen with re-presented formats, over many sessions, and then, the best result should be taken as an achievement of grade or pass so that the autistic person is not held back until they “recover” from autism to normalcy and thus never allowed to advance, or potentially restrict their pace and ability. To understand the seriousness of withholding education as a right, see Moore vs. British Columbia and the note that remediation may result in adverse effect discrimination because it assumes a person has to reach a certain level of normal performance before granted the right to be educated. Of course we want children to generalize skills and be as independent as possible or to achieve an 80% mastery, but often this concept of discontinuity is missed or misunderstood and education is held-back.

These have been my considerations of late and, and I support a variety of methods that befit a child and the combination of many may suit for different people and different situations, so long as they do not harm or torture an autistic person.

ABA is pretty much the only method which is used in Canada to remediate autistic people before granted access to education (particularly people labeled with Low Functioning Autism, who are non-verbal, or who have complex sensory systems). It can be a useful strategy also within a curriculum but it needs to keep examining itself from within and by studying autistic autobiography and potential effects of behaviourism on self-identity. I am suggesting that autism schools also need trained teachers in regular and special education and need to:

1) Be inspected by the Ministry of Education for meeting curriculum requirements (the adapatation and accommodation piece is an extended discussion);
2) Adopt other methods that we know help an autistic person learn through re-presentation of materials (see Judy Endow);
3) Be reflexive about the psychological effects of shaping behaviour and compliance may have on autistic individuals self-esteem and identity;
4) Learn creative methods and enable an autistic person to go on outings to educate not only life-skills, but other interests by using other methods and creative strategies. I remember one professor of an autistic child stating that when her son was interested (or people tend to label “obsessed” with asphalt), she took him to an asphalt factory.

Do schools undergo this kind of creative exercise for autistic children who, for instance, may bolt and may be so enamoured with routes and maps so as to learn something as opposed to controlling behaviour? Sure, we have to attend to immediate safety concerns, sensory regulation and building tolerance – these are important steps to an autistic person’s success. Yet my question persists – what can we do that teaches an autistic child to creatively channel their passions and proclivities? What are we telling an autistic child day-in and day-out about them when we ask them to “comply” to our agenda without enabling some of theirs? What is freedom if not mobility? Is an autistic person a slave to the performance of normalcy if they are not allowed to freely move their bodies in order to feel safe and secure? (See Judy Endow and Tito Mukhopadyhay). For instance, there is so much autistic autobiography about how autistic people need to protect themselves from over-stimulation – reverting to their iPad in order to be part of a group, squinting their eyes, or if they do not feel their bodies, they feel frightened and must flap their hands or lie on the ground in order to feel safe! If we are talking about “safety” how are we helping? To what extent to researchers and teachers use and take autistic autobiography seriously?

The other issue I need to bring up today is one of freedom of choice. What I find concerning about models of teaching for autistic people specifically is the judgement of some parents against other parents for choosing what they feel is right for their families and their children. It is not right to state that an autistic person has to undergo a certain drug or therapy or blame a parent or an autistic person. The freedom of families as well as autistic people is at stake, and while I wish to trouble this, I realize this has many angles and complexities within such a discussion. Some autistic people feel a parent agenda, if it is one of just becoming normal without critical regard, can result in problems when autism is seen as a disease that requires potentially harmful remedies. So by no means is this discussion an easy one, but there is no freedom if Canada only presents and makes available one kind of service. In short, Canada, with an autism agenda led mostly by parents, needs to consider what it’s building and its long-term effects. There needs to be choice for families, a respect for values and an invocation of substantive equality in our systems.

Here I wish to close with an opening – with the words of Melanie Yergeau, autistic, from her essay, Socializing Through Silence:

“My silence is in fact a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words – your words, the out-of-the-mouth and off-the-cuff kind – I often do so out of fear. Fear that my rhetorical commonplaces – the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds – will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all…This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer communication. I understand that speaking is how you best learn and interact…

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that – when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or ‘scripting’ lessons – when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.”

— From: Loud Hands: autistic people speaking, pp. 303-4, The Autistic Press.

Now, how can we respond?

Judith Snow at the ROM (closes March 4th)

Filed Under (Advocacy, Art, Inclusion) by Estee on 09-02-2012

Who’s Drawing the Lines: The Journey of Judith Snow

A celebration of an artist’s triumph over perceptions of disability

Opening August 20, 2011, the Royal Ontario Museum (ROM) presents Who’s Drawing the Lines: The Journey of Judith Snow. This intimate exhibition explores paintings by Snow, a quadriplegic artist and world leader on inclusion issues for people labeled as disabled. Who’s Drawing the Lines reveals how, through her unique way of creating art, Snow overcame a lifetime of perceived limitations to express “all that is in [her] heart”. Featuring over 20 works by Snow and several by another artist in her Toronto guild, the exhibition confronts common perceptions of disability and illustrates the artist’s emancipation from these stereotypes to honour her physical, intellectual and emotional diversity. Who’s Drawing the Lines: The Journey of Judith Snow is on display in the Hilary and Galen Weston Wing, Level 2 until January 20, 2012.

“Who’s Drawing the Lines is the most recent in a series of ROM displays illuminating contemporary issues that affect the community at large,” said Janet Carding, ROM Director and CEO. “Exhibitions such as Out from Under in 2008, and last year’s House Calls with my Camera shine a spotlight on diverse aspects of society and expand our understanding of the human condition. I know visitors will be moved by Judith Snow’s personal journey and motivated to help her create a world where we all celebrate our differences instead of being defined by them.”

About the Exhibition:

Who’s Drawing the Lines, showcases 27 paintings—23 by Snow and four by Felicia Galati, a fellow artist in the Laser Eagles Art Guild, an initiative founded by Snow to offer individuals with limited physical mobility the opportunity for self expression through art. Many of the paintings reflect Snow’s innovative approach to art-making: she has used a head-controlled laser to indicate selections, and currently works with a “tracker”, a person who follows her spoken or gestural directions in order to express her emotions and create these artworks. Captioned videos and photos in the exhibition also depict the various artistic techniques used by members of the Laser Eagles and contextualize Snow’s personal journey to become an artist and social innovator.

The ROM has created several accessibility initiatives complementing the exhibition. All label text is amplified to a larger font and is placed lower on the walls to be easily viewed by visitors using mobility aids. For visitors who are blind or who have vision loss, a tactile book accompanying the exhibition is available incorporating Braille, large print text and graphic raised-line drawings. Also available is a descriptive audio recording interpreting seven of the key art pieces presented in the exhibition, creating a visual image for those who would not otherwise be able to experience the art. An interpretive pamphlet summarizing the exhibition’s themes and content is available in person and online for all visitors. For more information on accessibility at the ROM, visit www.rom.on.ca/visit/access/index.php.

About the Artist:

“Inclusion is about the willingness to take a unique difference and develop it as a gift to others. It is not about disability.” ~ Judith Snow

Judith A. Snow, MA (York University, Toronto, 1976) is a social inventor and a builder of inclusive communities that welcome the participation of a wide diversity of people. She is also a visual artist and the Founding Director of Laser Eagles Art Guild. Snow is known for championing inclusive education, support circles, individualized personal assistance, person-directed planning and facilitated art. Born in Oshawa, Ontario in 1949, Snow was diagnosed as being quadriplegic at seven months of age. At age 12 she made her first sketch while at a rehabilitation centre. However, her artistic talents were not nurtured until, at age 55, Judith found a way to paint. This led to the liberation of her passionate expression—in art and in life. Since then she has experienced the dichotomy of being seen by many as severely disabled and by others as being a fully contributing citizen and inspiring leader. For more information about the Laser Eagles Art Guild, visit www.lasereagles.net/pages/default.asp.

Other Links Regarding Judith Snow and Her Work:

The Judith Snow Foundation
The Toronto Star
“Creating What I Know About Community.” Article for Inclusion Network by Judith Snow
“The Quiet Voice” by Judith Snow

Everyday Is A Work of Art

Filed Under (Art, Inspiration, Joy) by Estee on 07-02-2012

Tagged Under :

I have a favorite non-autism blog right now. It’s by friend/artist Carla Lipkin called A Water Colour A Day. I love Carla’s work (and she’s a lovely person too).The blog is a work of art — you must check it out.

It got me thinking of how another friend of mine, years ago when Poloroids were the rage, took pictures of herself every day the year before she turned fifty. On her fiftieth birthday, she put them all up and they made an exceptional piece. Blogging and journaling can be art too. The watercolour above is something I did a couple of months ago really quickly. I used to paint all the time while I was taking art studio and art history. Now it seems my duties as mother have taken precendence over the projects I really love doing. I have to ask myself why this has happened?

Looking at Carla’s blog made me think about the importance of the everyday. For some of us, we like to document it. We really do take the small stuff for granted. Adam also has artistic ability. Wouldn’t it be fun to make a little time every day to document something of our lives, no matter how seemingly trivial or small. At the end of the year these little things add up. Besides, isn’t every life a work of art?

A Breeze of Good Feelings

Filed Under (Acceptance, Adam, Art, Joy) by Estee on 14-06-2011


I’m going to ramble about good feelings. Following the shock of last week — hearing that Adam’s class was going to be dismantled — I felt like I was in another hurricane. That short story ended quickly, though, as the school came through to accommodate Adam for next year. They too understood the tumult he has been through. For me, it was a wake up call to our future. It’s not that we don’t know something’s coming, right? It’s interesting how something has to happen to get us to the next level. The occurrence reminded me that it’s time to leave the past behind, and get back to learning the next phase of advocating for Adam’s needs. It’s also time for him to learn that he’s autistic and what’s involved in that so he can begin advocating for himself. It’s not that I don’t think that he knows he’s different. What he needs is a toolbox of self confidence and skills to be able to stand up to the people I stand up to now as a neurotypical person.

It’s another reason why I love Autistic Pride Day which is on June 18th. I imagine what positive messages we can give to our children while they are growing up (for there are otherwise too few) — that difference is neither good nor bad, it just is. We are all unique individuals with differing needs and strengths. It’s important to be proud of ourselves, even if we have our challenges. We are proud to be autistic, or family members of autistic people. I would like to help empower and enable Adam in this way. A walk next year (as there is little time to prepare this year), would be a wonderful, peaceful way to walk proud.

Change has blown in in so many ways. It is because of times like the school news that I need to celebrate Adam, myself and the people we love. We are losing his aide of seven years and are welcoming a new one into our lives. We’ve hired a new male aide worker on weekends who I hope will become a part of Adam’s life. His team is shape-shifting and I see Adam soon sitting around the table for part of our meetings and later, for all of them as he tells us what he wants to do with his life and how we can best support him. Sometimes all of these changes literally knock me off my feet they are so exhausting, which is why I take as much time as I can to beam. There is love all around and I don’t take it for granted. There is a person in our lives and lots of music and good feelings all around. I no longer feel I’m swimming way off in the deep ocean. I believe I am arriving at shore — or the ship I’ve been building is at least sturdy enough to lead us there.

The really simple things make me extremely happy. The pummels and disappointments — whether they be from our past or about school — make these moments even more special. I can tell we are settling as I can’t wait for Adam to come home from school. I used to be so tired and worried about Adam’s distress. Just last year he was spasming so much he needed an EEG. Now, he saunters into the house with his lunch bag, flicks off his shoes and runs down the hall to the kitchen where his snack awaits. After reminding him to wash his hands, he perches himself at the counter and noshes at red peppers or fruit. If that’s not enough, he’ll ask (lately) for popcorn with vinegar (yes, that’s right). He’ll get the popcorn himself and after learning that pressing too many buttons on the microwave actually locks it, he turns to me and asks, “Popcorn, puweeze.” He is not quite satisfied until I open the package and turn on the microwave. Then, he’ll go into the pantry and grap the large plastic jug of white vinegar. “Vinegar, puwezze.” He hands over the heavy jug so I can pour it on top (yep) on top. He moves back to the counter stool and gets the popcorn from the bottom of the bowl first so it’s soaked, and chews on one piece at a time

I can also tell we are settling by our routines. Adam nestles into my arm at the end of each day while I watch Peter Mansbridge on The National. Sorry, Peter, but you put my son nicely to sleep. Adam his happy to watch with me quietly for a while. Then his eyes begin fall shut slowly and when he’s breathing deeply, I carry him to his bed, even though he keeps getting heavier. As I pull the baby blue blanket right up to his chin, he is grinning with his eyes tightly closed. “Goodnight my sweetheart,” I say. I kiss him and leave the room, remembering myself at his age, just as happy when my mother or father did the same.

I feel like Jodie Foster in Little Man Tate. Sure, we are not as verbally articulate, but we are no less expressive. We understand each other. We have our many ways. Like them, Adam and I lie around and watch the clouds together; and I hold him tight when the lights are low and the house is quiet except for the whir of traffic outside.

Without disturbing too much privacy, I think there are only a few things I can share as Adam’s ally — simply because I need to express these good times — like his love of music, for one. Adam also has some cool dance moves. This is a combination of raising his arms up in the air to swaying them with the rest of his body side to side, to a full on rock on jump and hand flap — and let’s not forget his electric smile. Adam is increasingly adept at piano and tries his hand at guitar (I think he prefers guitar — no lessons involved). There is no question that he has artistic ability (see photo).

This could just be becoming the happiest time in our lives. That’s why the news of last week was so upsetting because it takes so long to find balance and when there are additional challenges with a child, the last thing one wants is more. I know there are more challenges ahead, but today I decide to take in the light breeze.

I was once told when Adam was first diagnosed that this was going to be a “marathon, not a sprint.” Well, after a few years now, I don’t just think it’s a marathon…it’s Ironman. All of the work is really important, especially in a world that still does not fully understand and accept autism, but it’s not everything. It’s not what Adam will remember or what will necessarily trigger his heart. He’s going to remember when I carried him to bed and pulled the blanket under his chin. He’s going to remember lounging out in the yard and watching and naming the clouds with me when I’m gone. I think the work that we do goes without saying, but it’s also important to stop and listen to the music, to experience love. It’s everything.

For The Love of Letters, Lists and Other Things

Filed Under (Art, autism, Autism and Intelligence, Autism and Learning, Development, Obsessions) by Estee on 10-03-2011

I love letters. I’ve loved typeface since I was a child, remembering picking up my mother’s collection of old brown volumes of Encyclopedia Brittanica. I admired the letters, words and sentences before I could read them. Around the age of four, I tried to write letters of the alphabet by sounding them out. I was proud as I showed my mother warbled symbols drawn with red crayon. I don’t know if I wrote all the letters correctly, but I yearned to read… and write. 

These days I’m still attracted to typeface and letters, am a big fan of Cy Twombly and the artist, Agata Ostrowska (a printmaker whose work I’ve posted at the beginning here), and others who incorporate text into their work. It’s an “obsessive interest,” I guess you could say. I love the way one word can have one meaning when it stands alone, but when placed beside another, can connote something different.

Long after my “obsession” was contently embedded, I gave birth to an autistic child who also loves letters and read them by 11 months of age. I revelled in his ability while many others told me to be on alert — that Adam, with “hyperlexia,” meant that he would be able to decode words and letters, but his reading skills would still suffer later on — when he had to read phonetically and comprehend.

Yet, the other day, while sitting on his bedroom floor in the twilight,  I pulled out some pictures and words that I thought were completely unfamiliar. It seemed no-brainer to him. He just knew what all these pictures were. He picked up the information somewhere and organized it. I think kids like Adam are like sponges, picking everything up and making sense of it in their own way, despite the fact that we don’t always think so.

Language and comprehension is like art. We don’t necessarily acquire it the way Penelope Leach and Dr. Spock insist young children do, and we cannot be certain of how it is experienced and acquired, except that it does seem to be experienced on many sensory levels. We can make assumptions by how a person communicates, through different forms of expression. Like art, language acquisition, although widely studied, is largely ineffable; so vast that we will never know enough.

Lists, and obsessive interests like purported autistic collectors and artists like Joseph Cornell and Gregory Blackstock added fuel to my existing interest in not just letters, but the lists they can become. These are the way we organize information and make sense of them — the child who lines up the trains, the objects, perhaps,the artist who draws cities in perfect detail from memory, or the child who builds their knowledge like intricate networks of scaffolded knowledge. These are the ways we make sense and order of things.

Umberto Eco, art historian and novelist, by virtue of his profession, is interested in form, structure and order. As a curator of art, I too understand the art of catalogue. I enjoyed working in a library for part of my university career for this very reason. I loved the smell and feel of card catalogues in and of themselves. I understand the way curators and librarians collect things and how important it is — these libraries of human thought. In his book, The Infinity of Lists, Eco made me think about how I think Adam acquires language — like the curator — filing and cataloguing and even enjoying every sensory aspect like the musty smell of the card catalogue. How we take for granted the sheer art form of it.

 

To finish this post, I’ll leave the idea hanging for now. Just enjoy this. It’s something Adam found, actually:

But since we have digressed abundantly,
Turn back thine eyes forthwith to the right path,
So that the way be shortened with time.

This nature doth so multiply itself
In numbers, that there never yet was speech
Nor mortal fancy that can go so far.

And if thou notest that which is revealed
By Daniel, thou wilt see that in his thousands
Number determinate is kept concealed.

This primal light, that all irradiates it,
By modes as many is received therein,
As are the splendours wherewith it is mated.

Hence, inasmuch as on the act of the conceptive
The affection followeth, of love the sweetness
Therein diversely fervid is or tepid.

The height behold now and the amplitude
Or the eternal power, since it hath made
Itself so many mirrors, where ’tis broken

One in itself remaining as before.

– Excerpt from Dante’s The Divine Comedy, from Paradise, Canto XXIX, VV, 126-45.

Bosch Junior

Filed Under (Adam, Art, Autism and Learning) by Estee on 26-02-2011

Adam brought home a large scale drawing he made with his teacher — about 3×3 feet. He loves animals and started drawing them. Then he starting adding features. He shared the coloured pens, asking his teacher to draw things, using all his own languge, and adding different characteristics.

In this massive drawing, for instance, is an icecream butterfly, a snake dragon with zebra stripes (again, I’m using the language he uses as he is talking more all the time now), a dragon horse, a zebra pig, a strawberry cat, a cookie elephant and lots lots more.

I am loving this — marveling at the picture and how Adam made his imaginary world come to life and how, perhaps, he might be experimenting with ideas. Now, I’m thinking of Adam as my little Hieronimus Bosch…junior.

Ah, that wonderful autie mind!

Creative Behaviour

Filed Under (Art, autism, Autism and Learning, Inspiration) by Estee on 09-02-2011

I’m thinking a lot about behaviour today. I don’t often re-post the articles of others, but in my search, I came across this blog: Forward: FWD (feminists with disabilities) For A Way Forward.

A study recently released in Delaware found that disabled students are more likely to be suspended for ‘behaviour problems.’ More specifically, while 20% of the students suspended1 were disabled, disabled students only make up 14% of the student body. The study questions this disparity, asking why it is that disabled students are at more risk of suspension although there is an established body of law that is designed to specifically provide protections for disabled students, and to limit the circumstances in which they can be suspended.

The article asks, not ‘why are students with disabilities more likely to be suspended,’ but ‘what makes disabled students behave badly?’ I personally think that’s the wrong question. What is ‘bad behaviour’? How is this being defined, and who is defining it? It’s good to see some mandatory accountability in the form of tracking discipline numbers and reporting them, but accountability is only one part of the equation. If districts are not taking action to address the disparities, reporting them doesn’t make that much of a difference.

And are schools adequately identifying disabled students? While there has been more of a push in recent years to identify and intervene when disabilities are observed in the classroom, there tend to be racial and class inequalities when it comes to diagnosis and treatment. Likewise, there are disparities in identification; a teacher may attribute differences in learning and communication styles to disability in a white child, and ‘bad attitude’ in a nonwhite child, for example.

The approach to this particular educational disparity seems to be focused on what ‘makes’ students ‘behave badly’ instead of asking whether teachers are being adequately trained to work with disabled students and asking what ‘bad behaviour’ is and who is defining it. It assumes that everyone should (and can) engage in specific patterns of behaviour and it suggests that ‘abnormal’ behaviour patterns should be punished.

Are students suspended for not using modes of communication familiar to teachers? For needing to stand or pace while learning? For needing a quiet environment for learning, and for becoming upset when one is not provided? For needing orderly and precise schedules? For not completing assignments they don’t understand or find impossible to finish? For attempting to create and maintain personal space? For expressing any number of needs and needing a space where they are accommodated? For tics in the classroom?

When nondisabled people are the ones defining ‘normal’ behaviour and deciding what is bad and worthy of suspension, inevitably you are going to end up with disparities in student discipline. When teachers are not provided with adequate training, when they are dealing with classrooms that have too many students in them, when they are being burdened with a lot of additional work outside the classroom, a tinderbox of circumstances is created and disabled students tend to lose.

Suspension is a serious punishment. Students missing a month or more of school is a serious problem. Until we reframe the way that we talk about classroom behaviour, we’re going to continue missing the heart of the problem.

— article by s.e. Smith

I quote this because I’ve been writing about behaviour recently, citing the issues with have with how we teach autistic people because their “behaviour” is, purportedly, the “issue” of learning, or at the heart of, we are told, “learning how to learn.”

Instead, I’ve coined recently the term “creative behaviour,” and am watching Adam learn and gravitate on his own. How do we continue to foster the creative process? How can we move away from thinking about autism as a set of behaviours, implicitly “bad.” How, is the ultimate question, do we help children like Adam, express themselves?

Let’s think about this for a bit — what we know about creativity and the work we can produce. Let’s step out of the autism box and all of the implications we press upon autistic people (for the label alone) and think about what it is we are really trying to achieve.

Creative thought is the ability to think about the world in unique and fresh ways and convey this to the world. By bringing our unique thoughts to others, we help to shape the way we do things, and the way we think about other people. Creative thought also helps solve problems. We hire people to do a lot of problem solving for us, yes?

I now turn to Twyla Tharp, author of The Creative Habit: Learn It And Use It For Life.

There’s paradox in the notion that creativity should be a habit. We think of creativity as a way of keeping everything fresh and new, while habit implies routine and repetition. That paradox intrigues me because it occupies the place where creativity and skill rub up against each other.

It takes skill to bring something you’ve imagined into the world: to use words to create believable lives, to select the colors and textures of paint to represent a haystack at sunset, to combine ingredients to make a flavourful dish. No one is born with that skill. It is developed through exercise, through repetition, through a blend of learning and reflectin that’s both painstaking and rewarding. And it takes time. Even Mozart, with all his innate gifts, his passion for music, and his father’s devoted tutelage, needed to get twenty-four youthful symphonies under his belt before he composed something enduring with number twenty-five. If art is the bridge between what you see in your mind and what the world sees, then skill is how you build that bridge.” (p. 9)

Yes, skill is really important. A way in which to convey meaning to others is vitally important. The rituals and habits we establish are the practice we need in order to produce something. Creativity sparks when we stare into space, have that second snack from the fridge, putter, and when we appear to be doing nothing at all.

Adam takes piano lessons once a week. We’ve adapted the lessons, and his fingering is getting pretty good. I started teaching Adam to learn piano in a more traditional way a couple of years ago, even though we’ve learned to accommodate the lessons. He learns from a teacher who expects him to practice everyday and who can be stern about him sitting at the piano. In this case, Adam needs a bribe. I’ll ask the teacher to make him work for the candy, and he’ll oblige and finish practicing. Okay, it’s hard to learn piano in the traditional way. Yet, like Twyla says, creativity is a habit. It requires tons of preparation. So we stick with the program.

I’m teaching myself how to play the guitar. I struggle with the chords, my fingers just beginning to become numb at the tips; hurray, I’m building my first callous on my left index finger — a good sign. I pick it up every morning while Adam waits for his ride to school. He comes over and strums a good rhythm. He smiles and then gets really into it and forgets I’m there. A couple of days later, as I’m making a second cup of coffee, Adam goes to get the guitar leaning against my bookcase. He takes it to the couch and begins strumming on his own. He’s focused. This time, he doesn’t want me to help him.

Two great examples, I think, between the art of repetition and practice, and the space to explore. Rather than seeing Adam as behavioural, because he may avoid that which is difficult in formal practice (I was the same, by the way, when I was a kid), I explore the value of both methods of teaching and learning.

Art and music have been part of my entire life. I’ve taken music lessons with the strictest of teachers. When I thought I could fart away in art class, Sister Collette (don’t you just love that name that belonged to a Franciscan nun?), scolded me every week if I submitted a project late, and then loaded me with more work and deadlines because of it. While I was artistic, I didn’t think an art teacher would be so strict. “Art,” she said, “will teach you the greatest discipline more than anything else in your life.” I probably worked the hardest when I was in her class, where I stayed for my entire five years of high school. Art was an elective course, an option. Art wasn’t a “prerequisite” like math and science. We think of art in trite ways — all we have to do is be gifted, talented, and the muse will bless us.

Na uh. Art, like life and very much like in teaching autistic children, is the ultimate example. There is something intrinsic in all of us that we can express, and need to express. We find the tools to help us express it, and usually the ones that we most gravitate towards, but that doesn’t mean learning how to use them is easy! We work daily becasue the manifestation of our inspired thought is more difficult to express to others.

What I’m trying to say is that teaching autism is an art and has to be viewed in similar ways. We find the tools (aka “accommodation”) and we teach the child how to use them everyday. We repeat, but we do not de-value the unique process of taking in the world (aka: like when they are appearing to “not be in the room” or “in their own world”). And as the living art forms that all humans are, we must also as teachers and parents, forget looking at autistic kids as a Diagnostic Manual of symptoms and behaviours. For the human body and mind, in it’s infinite wisdom, finds the tools with which to also express iteslf. Let’s learn how to use them.

What is Healing?

Filed Under (Acceptance, Art) by Estee on 25-05-2010

We talk a lot about healing in our day. “Healing autism” is the idea that we can get rid of it rather than letting it be. In this video from York Institute for Health Research, Holly Small discusses how dance enables healing by re-integrating our experiences with our bodies and emotions.

As we discuss the idea of healing, I’m wondering if we are able to view autism in this way — to not just create a revisionist view of autism, but even to reintegrate the experience — being a parent or a person with autism. The following video made me consider how we process experience as both typical and the neurological minority. Assume for a moment, based on our assumptions about rates of autism, that autistic people are the minority. I phrase it in this way because I am in the arts. I come across traits in “typical” people who are able to discuss their atypicalities and sensory abilities that seem outstandingly similar to autistic people, although some more major handicaps may not be present in some of these artists such as motor planning issues or an inability to talk. Yet the atypicalities are certainly present.

What I like about the following video is the way healing is discussed by integrating experience. Acceptance is like an integration of experience, and the expressions we make both scientifically and creatively become manifestations of how we re-integrate the understanding of this into our consciousness. The video speaks of other interesting things too which I could of gone on about (schooling for instance), but I’ll leave the rest of the video to speak for itself. Copy and past this address to your browser:

http://www.yorku.ca/yihr/Research/miniDocs/holly/index.html

Miraculous or Naive?

Filed Under (Acceptance, Activism, Advocacy, Art, Autism and Intelligence, Autism and Learning, Autism and The Media, Communication, Development, Joy, Parenting, Politics, Writing) by Estee on 24-05-2010

It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

Why Disability Art is Just As Important As Any Other Kind

Filed Under (Art) by Estee on 18-05-2010

I have one big wish. It is for the use of public media (YouTube and the like) for the production of accessible art and video installation work. I am posting a few videos here to consider. Not only is Disability Art is as important as any “other” kind of art, it is important in various discussions about viewpoints, perspectives and issues facing us today. And sometimes it simply stands on its own as a visual or sensory experience.

The Sound of the Alphabet

Filed Under (Art) by Estee on 17-05-2010

Adam isn’t the only one who has a fascination for letters. Before Adam, I’ve been very caught up in them and have chosen works of art that play with them — Cy Twombly among many others. I find this video particularly lovely by Paul Lansky and Grady Klein:

Expression for Every Ability

Filed Under (Art) by Estee on 03-05-2010

As I return to one of my passions these days which is dance (these days Tango, specifically), I think about all the different forms of expression. I have been teaching Adam some creative movement this year which he also very much enjoys.

Watch these wheelchair dance videos:

This is a video poetry piece by Petra Kuppers and Lakshmi Fjord :

I hope to encourage more work like this by autistic people specifically by posting this. It is what I will be working on as I re-invent The Autism Acceptance Project’s website this year.

Remembering The Reason

Filed Under (Acceptance, Activism, Art, autism) by Estee on 24-03-2010

I decided to post this after seeing it again for the first time in three years. It was a lecture I gave at M.I.T.

Sometimes its good to remember why we started something, measure how far we’ve come, and plan what still needs to be done. Seven thousand registered members later to The Autism Acceptance Project (www.taaproject.com), and a monthly newsletter, we want to continue to achieve greater understanding about autism.

I’ve got some of my own answers to the following questions, and I’ve certainly learned a lot more since giving those talks. But I want to ask you:

How far do you think we’ve come since 2006? What would be a main point or goal you think we need to achieve in the next two years?

Ever Tried, Ever Failed: No Matter, Try Again

Filed Under (Art, To Get To The Other Side) by Estee on 21-01-2010

I’m excited about this:

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This is a painting made for me by Carla Lipkin (click on her website for more information about her artwork). I believe if you click on the image, you will see it more clearly. Carla has worked on it for about six months in preparation for my move next month. It now sits proudly in my dining room. It is a compilation — about thirty layers — of quotes and words I have sent her that have significant meaning for me as I “get to the other side” of my life after divorce. Over the past year, I have been reading and writing and meditating rather than putting myself out there too soon. I believed that mourning a relationship that was the most significant of my lifetime (so far) warranted no less of a process.

I decided, with Carla, to make something beautiful out of this period, and I am excited that it manifested in this result. I want to thank Carla and Hilary (her mom and my dear friend) for supporting me and for making an exceptional commissioned work that will remind me that there are no failures in life — only experiences. That said, thanks also to Adam’s dad not only for thirteen years and for Adam, but also with whom I hope to share a future of positive co-parenting of our wonderful boy.

My Kind of Welcome Mat

Filed Under (Art, Critical Disability Studies) by Estee on 20-01-2010

Some of you know that I have curated a few exhibitions. In 2005 and 2006 I curated two exhibitions in Toronto regarding autism in attempt to question stereotypes. On Valentines Day, I will be moving into my new home with Adam. It’s a cheesy holiday, I know. Yet, if I have to move out of the home my husband and I built together, let the love pour into my new one….very symbolic. My new home is about belonging.

The art I put in my home, as I see it, is an act of love. On a prominent wall in the entrance, leading up the stairs, I’ve placed some significant photographs (significant for me), which were in fact turned down by an organization that I proposed to do an exhibition with because “they may upset people.” I was told that, because most of the photographs were of nude, that this was the issue — not that they were both nude and disabled people. I would argue, however, that they would not likely turn down the Venus de Milo. She’s nude and she has no arms.

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I am building my own “outsider” art collection. You will find me always putting the term “outsider” in quotation marks because while it is a recognized term in the art community as a genre unto itself, the implication is that it is a genre on the margins of the art world because most of the art that was produced under this category is “self-taught.” Yet, it is a genre large enough to have created a category, but not quite significant enough, one could argue, to belong to larger art community that participates at Art Basel, Venice Biennale, Dokumenta, and at major private galleries an public institutions. I personally feel the attitude is changing. The term “outsider” has remained precisely as a symbol of how we might have formerly regarded the artists who produced the work as individuals who were relegated to the margins of society. I like to think that we have more respect for individuals today who were treated as “marginal” people.

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Disability, beauty and sexuality and the idea of acceptance and belonging are big issues when considering the essence of identity. On my wall, I have place a photograph of “Scarlett” in an rampaged room (I collected this photo from Europe), along with a series of Diane Arbus-type photographs by other well-known photographers. I compare them to the visionary Diane Arbus because she also studied families and circus people up close and challenged society to revisit ideas of what it means to be human in a time when such individuals she studied were sent to the circus for us to view as freaks. Diane used her camera to move in close, make us uncomfortable and like the freak show, she knew we wouldn’t be able to take our eyes away.

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When I put them up I thought of the upcoming house-warming and “renewal” parties (I like to call it that for now as I am in a period of renewal) and the way people are going to react to the photos confronting them in my front hallway, knowing how one institution already responded. Will this upset people; will they think these photographs are weird? I considered. Will it make them uncomfortable? For certain, I anticipate many conversations in my home about what it means to be disabled, what is beauty, what is identity and what makes a sexual being. On the one hand, I wonder about art in the home as typically people put up neutral things — should I have put up an abstract or a bunch of flowers?

Yet in my home, I have an autistic son. I live with difference and the beauty of his difference every single day. Not only do I want my son to see people with disabilities as humans — but beautiful humans and I want him to see himself as “beautiful,” if beauty be equated with value. I am often struck by how “beautiful” people in wheelchairs are still regarded more than average-looking people in wheelchairs. We often consider it “a shame” that “such a good-looking person” be confined to the wheelchair, as if the value of the person is now cut in half.

The people in these photographs are a mixture of beautiful and average-looking people with a leg missing, non-functioning legs and average-looking people with “mis”-shaped faces and bodies. I think to question beauty is important — from manufactured beauty to the beauty inside a person. Christine — the woman with one leg — is also reflected from a mirror on my fireplace mantel on an opposite wall. Everyday as I chastise myself for not being thin enough or young enough, I hope to be reminded that I am more than what I appear to be. I’ve advocated for Adam all of these years and all of these people, including Adam, have reminded me to be less judgmental of myself as a woman living in graceless times — where we carve ourselves under knives and lasers to become something “more beautiful.” I am not attempting to chastise the entire industry of prosthetics or plastic surgery because the industry has also helped a lot of people cope with events like breast cancer, burns and so on. But I hope that in raising the question we can all see how complicated the body has become. As a woman, I’ll admit this is a great area of conflict for me and my emotions can’t keep up with my head.

So, I had to question who else might put these works front and centre in their home (which is why I’m writing this post). It’s fine to look at such images at exhibitions and in book, but the home, where we manifest our identities may be something different. I’m trying not to self-adulate, because I found myself questioning. I know that some people will not understand and may initially feel uncomfortable (the precise opposite of what we try to accomplish in our homes as we want to welcome people to them). Across from the photos, by the way, sit two paintings that I purchased from Larry Bissonnette — a well-known autistic artist, and my two Jonathan Lerman pieces (also an autistic artist) are on the stairwell going down to the basement.

I have a series of thoughts and hopes, perhaps, as I put the work up. First, it will prompt discussion — some of it may be difficult, I understand. Second, I want to question stereotypes of not just disability but what is beautiful as we (especially me) spend many dollars and energy seeking to look more perfect and defy our age. And last, I actually want people in my home to let their hair down. I want the judge in everyone to disappear.

In my view, it’s the best welcome mat money can buy.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.