What caught my attention was the marketing of various intelligences today as attributes, not as deficiencies. In autism, however, we definitely have difficulty reconciling the differences. We sometimes understand and acknowledge autism as a different way of thinking and perceiving on the one hand, while on the other view the manifestation of the very same thought and perception process as impaired, deficient and in need of many therapies to correct. No doubt, autistic people face challenges and those that seem painful (indeed the perspectives on this vary greatly depending to whom we are talking) to many of us are the ones that get targeted for treatment. I wonder, however, if the very idea of thinking in proverbial opposites is the source of our problem — the one that categorizes individuals as “dumb” to “gifted.”
We are definitely conflicted in many ways regarding the way we think about autistic thought and contribution and Seth’s post helped me consider further how we might work to making autistic thought and perception process another one of the age-old multiple intelligences we don’t need to glorify, but take for granted in the best of ways.
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:
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.”
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.
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.
For over a month now, Adam sings this song a lot to me. It’s so ironic, isn’t it? My “little guy,” as he now calls himself, is beginning to talk more, is in to show-and-tell, and even playing the “teacher” — asking me to answer HIS questions (as if I didn’t already know that he is the Master and I am the student), and his voice has grown louder when he talks as if he is saying HEAR ME, HEAR ME… HEAR ME!!! When he sings this song to me, I imagine him thinking of how indeed when he grows older, he knows he will grow stronger.
I’m not an expert in “how to argue,” but I’m learning. It’s never to late to learn and improve, particularly when it comes to an advancement of how we discuss the plethora of views concerning autism. What is largely missing is a critical analysis and an understanding by most of us how to engage in ethical debates. The following consists only of a couple of sources found on the Internet:
From, The Way They Argue Now: “They should resist the temptation in order to cure liberal proceduralism of potentially inhumane tendencies; after all, procedures without persons do not necessarily lead to justice.”
Please feel free to add more references in the comments section so that we can all spend some time re-visiting the method of autism discourse.
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:
This is an interview with Paul Collins, author of Not Even Wrong: Adventures of Autism and Jennifer Elder. While we might shy away from citing autism as a “mystery” in that the term can alienate and separate autistic individuals from “other humans,” I don’t think Jennifer and Paul mean it that way, necessarily.
I like Paul’s comment on Morgan’s taking in the environment as “cultural artifact.” I know of many artists and thinkers and collectors who consider the environment similarly. While our autistic children seem to take in information systematically again, I have to wonder if how we see autism is the way that autistic people see themselves. Temple Grandin helps us understand this encyclopedic and visual approach to learning. We also have learned about autism as a sensory-learning (Tito Mukhopadhyay and others) of the environment.
Speaking of “cultural artifacts” and the visual world, I found this really great video on the object-world done for an artist’s porfolio. Note how the objects are lined up and the image that is then created. What then, might the difference really be in being autistic and the visual world when so many of us are inclined visually? Is it safe to categorize autistic people solely as visual learners? Or, as Collins and Elder suggest briefly, is autism just an accentuation of human traits that exist in every one of us?
The nice thing about art is that it is a language without words. It’s why I believe strongly that it is an important (not nice and trite, isn’t-the-Autie-a-genius) approach to appreciating not only how autistic people may see and develop, but of course of understanding humanity — a very broad statement, I know, but art is a way to bridge the barriers of looking at people with neurological differences as “abnormal,” “retarded” and the like.
It is also highly ironic that I write about art and that the art world seeks so many words to critique and analyze it. Yet, at the end of the day, we have a gut response to art before we have an intellectual one.
I was thinking about this as Adam has turned to art. This is not just peripheral observation…it goes deeper. Adam studies all the elements of things with ferocity and concentration. He will hold any object in his hand — even a part of an object, turn it around and study it, tap it and consider all of it’s physical properties. He may or may not label it, as he has done since he was eleven months of age (labeling, that is), but I consider that his sharing in this manner is simply his way of sharing with me because he has trouble with words. Yet, his understanding goes far beyond the label.
W.J.T. Mitchell, in his essay Visual Literacy or Literary Visualcy? (excerpted from Visual Literacy edited by James Elkins) asks how seeing is different from reading. “Even more interesting, what would happen if we reversed the positions of tenor and vehicle in the metaphor, and treated reading as ‘tenor’ — the thing to be explained — and vision as the vehicle that might help explain it? What would happen, in other words, if we thought of our task as one of research and teaching in reading, based in models drawn from seeing and the visual system?” (p.11).
It is in this vein that I believe we can begin to explain our words about autism and challenge our very basic assumptions. For instance, consider the two drawings below. Adam, at the age of 8 has fine motor planning difficulties. It is very hard for him to hold a pencil or crayon, but in the first drawing one can see it’s coming and that he is trying extremely hard to express himself.
The drawing beside it, also a Lion, was executed by a same-aged “typical” peer. By contrast, one can see the marks in this drawing made with strength and certainty whereby Adam’s drawing seems a little tentative and soft by virtue of his motor planning difficulty. Take another look. Adam took great care and time rendering that drawing. So much so, he even walked away, came back to reconsider it and lightly put the finishing touches carefully on the tail several minutes after it seemed finished. It was so lightly drawn that it was difficult to photograph. Look at the perspective and how he tries to implement it. It is not a flat drawing. He can see how the body has several dimensions. Compare it to the “same-aged typical peer” drawing — wonderful in its own rite but by contrast, there is, as of yet, no conception of perspective. In one drawing the earth is round, in the other, flat.
Adam's "Lion King"
A drawing of a lion from a same-aged "typical" peer
It is interesting to me to watch Adam’s “visualcy” manifest. It is interesting because he does not fit into any developmental mold. While his hand his light, he is ahead of the curve by way of his perception. One might mistake motor-planning difficulty with Adam’s “retardation,” as it was formerly labeled. Now how dangerous is this when we consider how to teach an autistic person? What assumptions about his intelligence are we making? When I think of schools I get extremely nervous about moving him too slow or too fast. One simply has to SEE.
James Eklins, Visual Literacy, New York: Routledge, 2008.
What do Michel Foucault, who taught at the Collège de France and Edward Scissorhands have in common? What do they both teach us in relation to how people with cognitive differences are treated by the legal system?
Foucault’s lectures from 1974-1975, compiled in the book Abnormal (Edited by Valerio Marchetti and Antonella Salomoni), suggest that our legal system is a mechanism of exclusion. Foucault argues that the emergence of abnormal in the nineteenth century constitutes the basis of human as: “the monster, the individual to be corrected, and the onanist.” It was the nineteenth century that saw the system of “normal” birth in the way we understand it today. Adolphe Quetelet established a measure of the stars that was also used as a model to create a “statistical norm” of humans for political purposes during this period. It should not be surprising then, that this system of “regularities” was used in medico-legal practice, and “produced a psychologico-moral double of the legal offense [thus] creating [a model] of the ‘dangerous individual.'”
Just how do we determine who is dangerous? The question is important since people with cognitive differences have been marginalized, feared and unjustly incarcerated. I do not think it needs rementioning that this fear underlies, even, the many media reports about autism and the fierce quest for a cure. Foucault, further, cites legal examples of how we exclude, judge, fear and incarcerate individuals who MAY BE a danger to society.
“The examination is that form of knowledge and power that gives rise to the ‘human sciences,’ and thus that contributes to the constitution of the domain of the abnormal. The examination of the ‘dangerous individual,’ for example, implied a control not primarily of what individuals did, but of what they might do. [italics mine], what they are capable of doing. ‘Dangerousness’ meant that the individual ‘must be considered by society at the level of his potentialities and not at the level of his acts,’ not as someone who had actually violated a law, but as someone whose potential behavior had to be subject to control and correction.”
Foucault has also said, “Expert opinion shows how the individual already resembles his crime before he has committed it.”
He also said in his lectures, “The first property is the power to determine, directly or indirectly, a decision of justice that ultimately concerns a person’s freedom or detention, or, if it comes to it, life and death. So, these are the discourses that ultimately have the power of life and death. Second property: From what does this power of life and death derive? From the judicial system, perhaps, but these discourses also have this power by virtue of the fact that they function as discourses of truth within the judicial system. They function as discourses of truth because they are discourses within a scientific status or discourses expressed exclusively by qualified people within a scientific institution. Discourses that can kill, discourses of truth, and, the third property, discourses — you yourselves are the proof and witnesses of this — that make you laugh. And discourses of truth that provoke laughter and have the institutional power to kill, are, after all, in a society like ours, discourses that deserve some attention…These everyday discourses of truth that kill and provoke laughter are at the very heart of our judicial system.”
As Foucault cites specific legal cases, it becomes clear that the least element of proof has been enough to entail a certain element of penalty. I do not think I need to cite specific cases in autism where autistic people are marginalized, assumed to be dangerous, and who often are mistreated by those in law enforcement. These stories are in the news every month. Stories of how autistic people are feared manifest in our treatment of them and the burden of proof lies heavy upon the autistic person.
As I watched Edward Scissorhands again last night, which should be a cult film of the disability genre, I want you to pay specific attention to the court scene and the “expert” opinion and then the group of women perpetuating fear. As autism is diagnosed by observation only, I hope to illustrate the bias that underlies our thinking and permeates our society and how it effects the treatment of autistic individuals not only by our formal institutions, but as Foucault takes further, in the law:
Michel Foucault, Abnormal: Lectures At The Collège De France, 1974-1975, New York: Picador, 1999.
I am really disappointed that the Autism Hub is on “hiatus.” A lot of people were referred to the Hub around the world and it is an extremely important gathering of blogs in support of autistic people. I remember when the Hub was started in and around 2005 by Kevin Leitch and what an undertaking that was. The Hub, since, has been explored at universities world-wide and on television.
My vote is to get it back online as quickly as possible. How can we help to do that?
I was doing a little mother’s day research this evening. When I saw Sophie, I was really happy. I was happy because I know Adam thanks me for all of these things that I do every day and I do not need him to say it just because it’s Mother’s Day. I can see his appreciation everyday when he sees me, grabs my face to look at me, when he snuggles with me, when he jumps into my bed, when he comes to me when he’s sad for comfort. We have the same connection.
All I need is this, and Adam needs my unconditional love.
It’s great being an autism mom, as it is any other kind. Happy Mother’s Day to all the autism mothers and grandmothers today.
We naturally wish to describe and understand a perception that seems foreign to many of us. As a parent to an autistic person this means a lot to me — attempting to understand Adam’s perception. Autism “experts” write prolifically on describing what autistic behaviours “mean” and these behaviours, observed by non autistic people, get interpreted and become at best, anemic descriptions of a kind of human experience. Autistic people do better at such descriptions, for obvious reasons. Yet so often, words fail.
I thought I’d post this video by musician John Cage as it provokes some thought on trying to describe the meaning of sound, that which is sensory and pleasurable, and for some autistic people, painful. As we know that so much of autistic experience is sensory, it got me thinking about the sensory experience — how life (that is, our “sensory life” ) is experienced differently by some and how others who do not understand human difference might attempt to explain inadequately.
Cage goes on to say that sound has no meaning — it just is. I thought this video was not only interesting for the purposes of thinking about perception, but also how we experience and attempt to describe autistic people. For me anyway, I felt some intersections when watching this and it in many ways reminded me of the In My Language video made several years ago by Amanda Baggs (which for convenience in case new readers have not viewed it, I have placed after the John Cage video):
Unlike Dawn, I am not a woman with Aspergers nor a primate anthropologist who has garnered much of what she has learned about humanity through primates. If you have not read her book, Songs of A Gorilla Nation it is a must-read. It has left its imprint upon me for years now. No, I am a mother of an autistic child, similar but not just like, her child, relating to my son in unexpected ways, finding my points of context from art and my own awkward experiences growing up — trying to overlay those in helping me understand Adam’s path. My stress has mainly come from outsiders who have put the pressure on us to change and be something other than what we are. I am glad to understand this stress and pressure in order to better help Adam chart his course.
From the time I began The Joy of Autism blog — and been downright attacked for it when it first started in 2005 (see right margin for the archive) — I was incapable of viewing Adam as that “blight” and “burden” that autistics were named. Everything Adam did was a downright miracle to me. Today, Adam — a kind, affable, giggly boy, has developed a curiousity and way of learning that never ceases to expand my own world and way of seeing things. Like Dawn’s son, however, Adam is changing, developing tics. He is growing into a world that he is beginning to understand in ways that I knew (and feared) he would. One could say it happens to all parents. Yet Dawn’s essay, however, cites a few exceptionalities to the growth.
People fear each other. The flavor of distance seems to me to be how a community organizes itself. The codes of distance constitute the law—for the living and the dead, so people close the lid on the toilet when they sit down to talk to someone else in the bathroom, signaling that they don’t intend to dominantly mark their territory in the midst of the other; and men can’t pick up and hold a crying child who is a stranger. This is why people always smile and say hello more often when they are on a trail in the forest, far from help, than when they are on a city street.
Unfortunately, the chief danger and distance he was learning is that people can tell you that what you are isn’t what you should be. I knew that the children at school were teasing him for talking to plants and bugs and rocks. His teacher told us he had a learning disability and had some attention deficit problems. He was starting to not be able to sleep at night and had anxiety attacks. Where he had always been an easy child he started to throw himself to the floor and scream over the smallest challenges. He started to be unable to go to restaurants because the lights hurt his eyes and the normal noise of conversation hurt his ears—he would cover them with his hands and rock, trying to get under the table. He developed strict routines and would fall apart if something unexpected happened. He started to develop tics. He was becoming contextually autistic.
This essay is beautifully written. Remembering Teryk, her son, playing in the prototype sensory room set up at The Sheraton Hotel in Toronto, where I introduced myself to Dawn and received such a warm hug from her, I feel we share a bond beyond that introduction by way of this piece on the special privilege of raising an autistic child. It is the bond of easing ourselves into the world as both autistic people and as their parents amidst the deluge of questions, quandaries and challenges that continue to face our children all the while loving them and getting them for who they are. And who better than Dawn?
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.
because finding joy doesn't come without struggle;
because the point is to find it;
because if an autistic person calls autism their way of being, not an illness, then it is;
because every human has value and is a joy;
because despite inhumane acts, I believe in humanity;
but most of all, because of my son Adam.