Master of Our Own Destinies?

For those of you interested in the History of the American Eugenics Movement, go see this interesting website: Image Archive of the American Eugenics Movement, further to my earlier post: A Better Breed of American


Captain of my own destiny, keeper of my dreams. 

Hard to believe that such a movement would state that my son be sterilized, marginalized, and worse, would not deserve to exist. The movement is all to recent to forget, and perhaps lurks around the corner again.

Autism Diva wrote a post on mercury today and I wrote a comment on her blog quoting from the site mentioned above:"By mid-19c most scientists believed bad environments caused degenerate heredity. Benedict Morel's work extended the causes of degeneracy to some legitimate agents -- including poisoning by mercury. Richard Dugdale believed that good environments could transform degenerates into worthy citizens within three generations." The talk of mercury now, and the words from history, send shivers up my spine.

Must there be a "cause" for autism? Is it another attempt to "degenerate" the autistic?

All I can say today is, let us never forget.

This Is What It's All About

I am compelled to share a paper that landed on my computer this morning written by my 16-year old step-son, Max:

Adam's World to Mine
By: Max Wolfond

I was thirteen years old and preparing for my Bar Mitzvah (Jewish ceremony into manhood) at my desk when I heard yelling from the room down the hall. My heart began to pound, as it often does when I hear panic. Moments later I heard my step-mom Estee scream "My water broke!" At an instant my dumbfound face turned immediately to a smile. She was rushed to the hospital by dad and a mere eight hours later, Adam was born. Unlike my clever response at age three when my sister was born, "I knew it was going to be a boy or a girl," when I first saw Adam I was speechless. I had never been so happy to see a baby cry in my entire life. I don't know if I realized it consciously or subconsciously, but at that moment, I knew my life would change forever.

About a year and a half later people began to notice things. Adam was not making eye-contact like most 18-month old babies, nor was he socialable as the other kids in his nursery. It became somewhat of a concern to the family and to Estee especially. I cam home from school one cold December afternoon to find Estee struggling to hold back tears. She told me that Adam had been diagnosed with autism. At the time I was not exactly sure just what autism was, although I had known somebody at camp who was autistic. I did my best to show sympathy for my dad and Estee by saying I was `sorry.' So life went on and Estee began to hire therapists to work with Adam. She hired two therapists who worked closely with him, on basic skills such as interaction as well as trying to stengthen his verbal and non-verbal communication skills. At about one, my brother Adam took a keen interest in letters. Soon, he could recite the whole alphabet and identify letters at random. He could also count to twenty.

Adam is now three and two-thirds old and is working with a therapist daily as well as attending Nursery School for half the day. He has a very busy life and no doubt keeps Estee and my dad's lives busy as well. Adam is now able at less than four years of age to read a number of words and write the letters of the alphabet. He is very compassionate and gives a hug to just about every friendly face he sees. Like any kid his age his favourite foods are pizza and chocolate. Something as simple as jugging can make him smile and laugh, and often cause him to burst into song. When he hurts himself (bumps his head or falls), it takes all of thirty seconds to put a smile back on his little face. He is the most loving and happy three-year-old I have met to-date.

I find "Adam's world" to be the most intriguing of anyone in our family or any of my friends. This is not to say I love him any more than the rest of my siblings or my parents, but his interaction with others is more fascinating than most people I have met without autism. The goals of the work Adam is doing with Estee and the therapists have changed since he started. Where as the initial goal of the therapists and our family was to "cure" Adam of autism, it is now quite the opposite. We believe that it is not Adam who needs to be cured, rather, our society who needs to be cured of its phobia of difference. Society needs to learn to accept people for who they are, not who they want them to be. Our new goal is to try to get a better understanding of Adam's way of thinking and how he sees the world, to better the way we can interact with him. I feel people around can learn from Adam and learn other things from other's with autism. A common misconception and assumption people make is that all people with autism have the same problems and same strengths as one another. In truth just like all human beings, people with autism spectrum disorder are all extremely unique. Techniques we use to help Adam may be different than the ones to help "Sue," but the primary goal remains the same: Acceptance.

On April 11, 2002, the stork dropped off a helluva gift. My baby brother has given me so much love and happiness, and so much to learn. I am certain he will gain abilities that will take him on an endless path of success in his life and I pray people will be able to see past the word often put in front his name: Autism. The uniqueness he possesses will show the world that "they" are not all the same, and are wonderful people too. The initial tears on my step-mother's face the day she got the news have quickly turned to tears of joy. Adam is growing into a sensitive yet strong human being. He is to me a brother, a friend, and a teacher, and I am certain my life could never have been so great without my younger brother Adam.

Could a brother and an old step-mom be any luckier? Can a sixteen-year-old change the world?

A Better Breed of American

The Sunday New York Times reviews a book that some of you might also be interested in: Better for All the World: The Secret History of Forced Sterilization and America's Quest for Racial Purity by Harry Bruinius.

The book reveals how in 1904 biologist Charles Davenport established the Cold Spring Harbour Laboratory on Long Island as a national center for eugenics reseach and policty planning. Several years later Davenport created a Eugenics Record Office with Harry Laughlin at its head, "sending field workers across the country to indentify the `germ-plasm' of unfit family strains so it could be eradicated... Bruinius deftly plays up the contrast between the eugenicist's obsession with cold measurements of human value and their own messy lives, which were marked by disease and behaviour that could have qualified them as unfit."

"Cold human measurments of human value," can be attributed all the way back to Gottfried Achenwall in 1749 who created the word statistik -- used as a political arithmetic, but that concept was later applied to the body in medical science. Bisset Hawkins defined medical stastics in 1829 as "the application of numbers to illustrate the natural history of health and disease." (Disability Studies Reader). It was the French, Adolphe Quetelet (1796-1847) who applied the most generalized sense of the normal. "He used the "law of error" by astronomers to locate a star by plotting all the sightings and then averaging the errors, [and noticed] it could be equally applied to the distribution of human features." (Disability Studies Reader, Edited by Lennard J. Davis, p.11) "He then too a further step of formulating the concept of l'homme moyen, the average man. As we can see, an ideology about a middle class was born from these early concepts.

"In America and elsewhere," The New York Times Review states, "enthusiasm for eugenics was broadly supported by elites. In Britain, people as varied as Winston Churchill and George Berhard Shaw embraced its goals, and there was lively debate about how much the state itself should control reproduction on individuals. Eugenic science especially appealed to Fabian socialists, who saw it as further justification for abolishing class -- after all. once the playing field was level the effect of heredity could finally express itself clearly and be studied....

Bruinius sees America's leadning role in the eugenics movement as a reflection of its utopianism. `Seeing their country as a land of innocence, many Americans had long clung to the idea of self-purification, attempting to excise that which posed a danger to the social good...Bruinius describes how Hitler modeled Germany's sterilization policies on California's 1909 sterilization law. While reports of Nazi racial policies provoked a growing outcry among the American public, eugenicists themselves remained enthusiastic, with some traveling to Germany to study its program."

Some of us may already know that the so-called "mentally ill" and "developmentally disabled" in 33 states underwent the procedure of sterilization.

Perhaps this book and understanding the history of eugenics and the quest for perfection only hovers beneath the frightening surface of the Holocaust and awaits its day to seep out of the cracks of biotechnology and genetic engineering. It lives in marketing pulls for things as seemingly trite as botox, plastic surgery and the quest to stay "perfect" for as long as possible.

It is the American Dream gone way way awry.

The Wind and the War

The migraine has passed and I spend some time reading on the beach print-outs from autistics on rights, Jim Sinclair's good piece "Don't Mourn for Us," the ongoing online debate between Michelle Dawson and Wade Rankin, and my Disability Studies Reader.

Adam runs up and down the beach, watches sea gulls and parasails on this windy day in Miami, happy, but...oblivious to the hundreds of man o war (sp?) that in the last few minutes, have swept up onto the beach. It is the first time I've seen so many man o war but I've heard of what they look like -- these blue balloon-looking creatures. I jump out of my chair and pull him away from the water quickly.

The wind and the war -- may the wind blow away the injustices and wash the war away.

What I've Learned So Far

In my recent quest to ask some lingering questions about autism, I've learned that all parents love their children and the journey with autism is a complex and emotional one.

I think there is a point here for all activists, even to those who are autistic, in fighting for equality. The emotional journey this is for parents is significant and shouldn't be underestimated for the sake of philosophy. Sometimes, the fight becomes more important than the person, and when this happens, we have to reconsider the position from which we argue. I think parents deserve all the kudos in the world for doing everything they can for their kids with autism. As long as we all have an open mind and an open heart, our kids will thrive. Children thrive on love. (disclaimer: sometimes parents do things out of "love" for their kids that are medically dangerous -- I will never agree with parents on that).

In respecting parents, emotions, feelings, (I have my moments), when we have the energy, the arguments for equal rights for the disabled, I believe, are still vital ones in order to obtain the respect and concessions our kids will need. We may debate a great many issues, but let us never judge one another through a blog -- we can never know how people live, in what circumstances, and just as much as we have to respect the rights of people with autism, we have to respect the work of the people who parent them.

I've been debating what to write this past day or so -- what it means to write a blog (a self-gratutitous act, notes for my book, sharing with a community), and have come to the conclusion it is all of that. I may be wrong, I may be right, I may provoke to the point of annoyance, but in sharing all of our words, the point of this, for me, is to learn. And I must say, many of you are helping (read Zilari's response to my request to write on "How and What to Teach" -- thank you so much, Zilari!! (see PartProcessing in sidebar). As a parent, I am no expert on what it feels like to be autistic -- from a social discriminatory sense, from a sensory perspective, but I can be an advocate for my son and continue to try and work for his best interests. I AM, however, an expert in what this feels like for me, and how incredibly insensed I become at anything that smells of discrimination, or alludes that my son is less than human, normal, because he is autistic.

I will continue to have many questions -- I will debate and provoke standards, systems and popular thinking because it is important for ME on MY journey -- I'm very interested in the rights of the disabled, a movement which has only surfaced recently despite an enormous international disabled population. The next questions I will have when I get home from Florida is the construction of "normalcy," a construct that is as recent as the mid-1800's. Also, I am interested in PreRainManAutism's (see sidebar for link) posts on anthropology and autism, which puts a lot of today's hype into focus.

So for what it's worth, as I suffer from a migraine and consider the burdens I often feel in the face of what may lie ahead for us, despite debates, my heart is with every fellow parent out there.

Deconstructing A View Continued: Autism as a Gift

Kev of Left Brain/Right Brain made a comment about Sigourney Weaver's "autism is a gift" statement in reference to her newly released movie "Snow Cake" where she plays an autistic woman. Weaver talks about how she came to talk to autistic adults and observed a greater appreciation, in them, for the details of life -- a child-like view and a sense of wonderment as Einstein once stated. While I initially thought of Weaver's comment that "autistic people are gifted" a little naive because it is a generalization, I have to rethink this in terms of the pool of humanity -- each of us having inherent gifts within us.

In our society, which values homogenization -- a mediocratization of humanity and its manifestations, the idea of giftenedness is translated into genius. The two are connected, but not the same. I prefer Michael Fitzgerald's definition of genius which states that a person with it must alter the way we view the world. Giftedness can be viewed as having a special ability or talent. In this wider definition, we can view everyone as gifted in one area or another. In short, it is a similar concept to "different intelligences."

Jasmine O'Neill, author of Through the Eyes of Aliens: A Book About Autistic People, and herself autistic, seems to also view autism as a gift:

"I believe there are intelligences that cannot be measured. I believe Autism is one of these. Autistic people must be discovered [Donna Williams' version of the "cat" mentioned earlier].They must be coached to reach their full potential. They are worth much more than being subjected to idiotic theapies, which push them to repeat endless tiny tasks. Use tiny tasks as stepping-stones to mysteries beyond. Autistic people must be allowed to live their lives the way they please. They need to feel happy about themselves and be proud of who they are." (pp 56-57)

In this mornings post of mine Asking the Questions -Deconstructing a View that I wrote while packing my bags this morning, I ask the question of what we are teaching to autistic people is right. Is acceptance about transforming autistic people to our way of responding to and acting in the world?

"Their [autistics] gifts are formidable assets. Even autistics who aren't savants have special gifts, which aren't present in non-autistics. Autistic people naturally are better at simply being themselves. They are not magicians. they should never be criticized or called stupid because of the way they live. People who are adept at focusing attention like a laser beam are people who can retain details. The tiniest details they notice escape other people's attention. Minute details are important too. They exist. Plus, they can build up one another to create big details.

Savant gifts are present from birth. They are honed, as the person grows older. A misconception is that only mentally slow autistics can be savants. I am a savant in music,writing poetry, drawing and some electronics. Savants are amazing, fascinating people. They may never be able to live independenly. Some of them never grasp the complexities of regular human life enough to be able to drive a car, or look after a bank account by themselves. Yet, they have one or more very superior gifts which they can perform better than other people can. Also, there are those svants who do very well at many things; they have their specific savant abilities, combined with a knack for picking things up rapidly (one sign of the type of intelligence measurable in IQ tests), and they are whizzes at various things. They thirst for knowledge. They are insatiable.

Contrary to waht a few teachers still believe, most autistics enjoy learning. There are many examples of this. If an autistic is interested in learning, but is unable to get others to teach her, she will find a way to teach herself. Sometimes, communication skills aren't developed enough to tell others what she wants to learn about. Other times, too many surrounding people don't have faith in this `autistic cripple.' If other people are condescending, and have no faith in the special child or adult, he will begin picking that up and have no faith in himself." p.57

In my post called Sensing the World Into Existence, I entertained this notion of intuition and exceptional sensing by Adam. The way he hones into my emotions in a split second, the way he inherits them as his own and is so sensitive to people in general -- there are many times I believe that his sense about people is much more acute than mine (and I like to think I'm pretty intutitive). There is just as much, if not more value in this way of living, and like Weaver suggests, and the way Albert Einstein stated, our society no longer values the child-like perspective, the sense of wonder that gets lost in the face of the quest for the material, the quest to be like others, and hence, nothing.

I hope this extensive quote from Jasmine's book further suggests that autism is a gift, and further, how we may be misguided in our approach to teaching our autistic children. If we take this view, perhaps we can create learning environments that nurture inherent strengths and talents instead of focussing on the negative, on remediation (sorry, there's that word again), and on changing autistics to be like us.

(I'm in Florida now and can't yet figure out how to make links for you on this computer...bear with me!)

Asking The Questions -- Deconstructing A View

In a world that I cannot fully understand how do I know how and what to teach? I’ve asked the question to Zilari who wrote a great post “Listening or Not Listening” about what is important to teach autistic children.

My main concern is that we are trying to teach “connections,” and “appropriate responses” to people who see the world upside down, so to speak. I am doing just this – trying to interpret Adam’s perspective and finding the modes of teaching that will nurture his inherent strengths. Because we live in the environment we do, see the way we see, we do not know what else to teach. We set up classrooms in a particular way, we talk to respond to questions, write tests -- it seems that autistic intelligence and perspective is completely different from our own and that perhaps we should not be the ones imposing teaching styles and methods upon our children. So, hopefully our friend Zilari (and the rest of you with autism, I hope), will continue to shed light on this as much as Larry Bissonnette, Sue Rubin, Lucy Blackthorn did in Biklen’s book Autism and the Myth of the Person Alone.

I also find words of wisdom from Squaregirl, who is autistic and teaches children with autism. Donna Williams who consults online has agreed to attend my festival this October. I have also discovered a great deal about Adam through correspondence with her. In trying to support people with autism, I really seek out their advice. It largely comes out in their writing, as it can be the easiest means in which to communicate.

Donna wrote me that typical teaching styles do not always befit the child. In the case of Adam, he is like a “cat,” she said, and when cats are ready, they will join in. I don’t think that RDI or ABA will be patient enough for cats. RDI claims that the autistic child is “confused” about the environment and we, as parents, have to be their guides. That sure makes sense to me. In this methodology, we are teaching children how to have a relationship with us, assuming that this could never develop on its own, in an autistic way, and perhaps that way is not acceptable to us as parents who long to hear the voice of their child, who crave a hug and affection. But does this show of affection and relationship mean the same thing to an autistic person who doesn’t see anything inherently wrong with the way they see things, but rather, struggle within a world that forces them to be like us, or may show affection in an utterly different fashion? Did Tito’s insistent mother convince him what was “good” for him? Did Stephen Shore, whose mother didn’t have any interventions, fare any worse? Acceptance and what that fully means is a fundamental question as I continue my struggle to understand.

As a parent, it feels wrong to sit and do nothing. There is an autism culture out there pressing us to give our kids tons of remedies and therapy. Our culture is wrought with pressure to hire an expert, buy a drug, go on a diet…DO SOMETHING to fix things, because the way things are can never be right. There is always some marketer out there who says we can have more, do better. Then, in our kids we see improvements, so it must be right, right? Do we ever consider if “improvement,” whatever that means, could happen on its own, with an individual’s development of consiousness or SELF? Afterall, where would these kids be without remediation? Out of love for our kids, I too justify my actions – trying to help Adam “connect with the world” (do I presume he doesn’t in his own way?), respond, get by in school, keep him safe in an unsafe world. All seem to be worthy goals, and they are done out of sheer love, and fear, for our kids.

Mainstreaming seems to be a goal too – anything that helps our kids “blend in,” garner a group of peers so they won’t feel alone – this is one aspect of autism that shakes us parents to the bone, and one that kept me in shock the minute my husband uttered the word “autism” on November 28, 2004 at 3:30 in the afternoon. Picturing my son without friends, or with peers that look at him oddly, judgmentally, simply broke my heart.

Today, when I read people with autism, I feel more at ease about autism but now worry that what I am doing still does not honour Adam’s way of being fully. The intellectual debate is important because we are at a stage when we do not accept difference and disability entirely.

In a discussion with my husband about words, he stated that the word “remediation” is like “splitting hairs.” His eldest son, who went to an all boys academic school, did a math remediation course, he said. So, on the surface it seems harmless. And yes, it may be splitting hairs. But what of “remediation” classes for special needs kids in public schools? Is that the right word? It offends me because it assumes that all special needs kids are cognitively delayed ---that they need to be fixed.

“Too often, individuals with autism are asked to make accommodations, to use `typical behaviour,’ and to learn `appropriate social skills.’ Instead of asking students with autism to make all of the adjustments, teachers and students without identified disabilities can rethink their ideas about concepts such as `typical,’ and `appropriate’ and question whether conforming is always the best way to support students with autism. For instance, instead of asking the student with autism to study all of the social norms of attending a basketball game (e.g.; sitting on bleachers, cheering when the home team scores), all students and teachers in the school might expand their notions of what appropriate participation looks like." (From Paula Kluth Your’e Gonna Love This Kid: Teaching Kids with Autism in the Inclusive Classroom p.107).

Taken a step further, if we can accept differences in development, that development does not always occur on the same timeline for everyone, then we might be able to rephrase education as “individual.” Individual Education. It is a term that is used today but not to its fullest potential. Think of all the skills and talent we could develop if we really understood different ways of learning, seeing, understanding? I think there is a lot of possibility in that. For this reason, I turned to a lot of books on different intelligences and gifted learning to discover that most gifted people have a learning disorder. In the face of autism, that makes complete sense. It acknowledges that giftedness is inherent in so many of us, despite other areas of weakness. If we can view all of us as gifted in some way, in a more general sense, then we might be able to honour the person’s individuality, and difference.

To me this is the most important thing we can do as parents to help our children and ourselves in appreciating them. It is reframing our views, thinking about our actions, our words and what Being, Belonging and Becoming means in this question of what it means to be human.

We are off to Florida to visit Adam’s grandparents now. It is a time when I can stop and watch Adam run sand between his fingers and stand at the foot of the ocean, wondering how this world looks to him without always having to “re-direct” him. There is a kind of freedom in acceptance.

Stumbling Over Words

I anguish over how to put things. I find that expressing myself often comes out wrong in this heated dialogue about autism. I stumble over my own words, trying to say the politically correct thing, something that sums up a thought just so, a word to describe the formidable nature of autism and acceptance -- and turn to autistics for answers. I seem to never never get it “right,” as being who I am is intrinsically wrought with problems from a set of experiences that inhabits the way I see things.

But the words must continue to flow, the effort must never cease.

I am confused as to why, when I say that we need to accept our children the way they are translates to some of you as a parent who idles – does nothing for one’s child. In some personal emails directed my way, I am under the impression that my use of that term “acceptance” means I sit back, marvel at Adam flicking his hands in the air and say everything is okay -- that somehow there is simple poetry in that and it should just be. (There is some poetry in it, by the way, but it can get in the way of learning). That baffles me. Accepting the autism does not mean giving up, it does not mean that children of all kinds do not need to learn. It does not mean that everything about autism is wonderful. It simply means I accept the autism in my son as his way of being, for better or worse. As he grows older, he will have a way of showing me the way he sees the world. I accept that he will not be like me. He will have obstacles and he needs my support and society’s acceptance the way he is in order to feel like a validated and contributing member of society, and to feel a part of it.

I am constantly anguishing over teaching styles and do not abandon a style of teaching simply because I hold these principles of accepting the autism. I just do not want anything to harm my child, or to squelch any of his sense of SELF. -- it is a myth that autistics are not intrinsically motivated by many things and must be constantly reinforced artificially. As I said in my previous entry, I simply try to cull from different teaching approaches to find what works for Adam. I have an “antibehaviour behaviourist” (her words, not mine) consultant on my team, who has learned to welcome many styles of teaching. We debate and follow Adam’s lead in what he wants to learn because I see that he has many interests. At this stage, Adam’s perfectionism sometimes prevents him from trying again, so lots of praise is important for him now. I want to encourage every attempt he makes. He is so intelligent, my little guy. I pains me to think that just because he doesn’t want to say hello to someone on cue that his entire mental faculty is judged in an instant.

I am incited by people who want to cure autism. This is clearly against the wishes of those with autism. Strict behavioural approaches also hurt people with autism. It’s not that I don’t think all behavioural tactics are horrible – we use them everyday with all kinds of children to motivate them from potty training “stickers,” to stars on a spelling test.

Whatever language you are using, “remediate,” “teach,” “help,” “help connect” -- many of us are simply trying to help our kids learn within the environment we live, and with the obstacles that are present. At the same time, other people who use those same words “accept” are doing just the opposite in the way they do things. Some people talk the talk, but they definitely don’t walk the walk. Meaning is subjective and words can be manipulative.

Accepting autism does not mean that we as parents do not want to help our children function and hopefully enjoy the world in which they live. We simply want to respect the viewpoint, the perspective so that the world will make a place for them, give them a voice, let them make choices for themselves. As I said in my post “What Is Quality of Life?” empowerment is about choice and it belongs to everyone with any kind of disability. If we do not continue to raise awareness and BELIEVE in autistic intelligence and competency, then society will not provide autistic people with any rights of self empowerment. This is why I think language is important – we always have to think about how the rest of society will decipher it when it comes to creating tolerance and opportunity for our children as they grow into adults.

I know I’ve started a debate about semantics and how I believe it reflects the way we think and feel and then how we act in society. It seems I too am making a lot of mistakes in my own semantics, and look to the community of autistics for help. Even that word “autistics” I discovered, is the more accepted word, where I thought referring as “people with autism,” was more respectful. I am wrong, however. In Why I Dislike First Person language, Jim Sinclair wrote in 1992:

But when I – and other autistic people – choose to refer to ourselves as autistic and express our preference for being referred to that way, and we are told that our opinions don’t count because non-autistic people have decided it’s better for us to be called something else, this shows absolute contempt for us as self-aware, communicatively competent people. The idea of putting the “person first” in language makes about as little semantic sense as saying “White Christmas” is racist…To put it bluntly, your prejudices are not our problem, and you should find ways to deal with your prejudices without trying to cut our nature off from our personhood. It is tremendously invalidating to say that people’s basic perceptual and mental processes are so inferior that they’re not compatible with personhood.

I apologize if I’ve offended anyone with autism. I am always stumbling over my words. Everyday, I seek to find the politically right way to state things. I encourage autistics to help me along the way, for I will never know what it means to be you and how you feel about the way I represent you in my writing.

The language debate takes its toll. Kit Weintraub likes to really twist language around to state that autistics who dispute her are “not really autistic at all,” and that the plight with her son is different, more serious. This is an example of a parent of an autistic child who is doing nothing to advance her child’s rights and opportunities and in fact is herself, discriminatory against autistics. This is just one example how parental community is ripe with prejudice:

In Support of Michelle Dawson and Her Work from autistics.org, Kit Weintraub “claims that she doesn’t want her children to be cookie-cutter people, but on the other hand says that if she could erase her son’s quirkiness, she would, because people don’t accept him for it. She describes medicating her daughter for her behaviour and hospitalizing her to use a `tough’ behavioural approach to get her to eat when she started having sensory aversions to food textures, and makes it sound as if this the only possible solution to these situations. Above all, Weintraub does the usual things that are done to dismiss the opinions of autistic people:

- She questions whether we are really autistic at all, showing the skills we do have, particularly intellectual and writing skills;
- She simultaneously makes accusations about lack of empathy, insight, or compassion that are often leveled against autistic adults who disagree with the presumed parental status quo;
- She mistakenly equates the statements “We don’t want a cure,” “Autism is an integral part of who we are,” and “We don’t want `help’ that harms us” (which we do say) with the very different statements of “We don’t want help with anything,” “We have great lives,” and “We think all parts of autism are absolutely wonderful” (which we emphatically do not say).
- She brings out descriptions of her children that are intended to show how different her children are from us, without ever meeting us to know how we were at their age or even how we are now. As Dawson herself says, “How you can tell me when exactly it became good science to diagnose over the Internet.”
- She makes it sound as if problems (when they are actually problems) have an all-or-nothing solution – either her methods or nothing, and that means Dawson is advocating neglect.
- She blames her children’s difference for the cruelty that other people to show to people who are different, thereby shifting the responsibility for their actions off intolerant people and onto autism.”

From Weintraub’s words to our ears, this example shows how semantics reflect the way she views her child and people with autism. It is very important that we all try to watch our words because others are listening and interpreting them. I don’t think dismissing it as “perilous territory,” is an excuse to give up on trying. The work on our part, will always be to clarify our meaning.

On a personal note, Adam found the right words today. A child was bullying him and Adam retaliated by pushing them away and saying "NO!" I say this because in the past he has always been passive to a bothersome tug. I have been hoping and praying for him to find the words and initiation to retaliate when people bother him. He is truly a little cherub, snuggling sweetly to me, hugging the dear people in his world. At times I’m afraid that he doesn’t discriminate enough -- not everyone will be his friend in life. Yesterday, he developed some canker sores in his mouth and he looked to me for help, putting his hand to his mouth saying “mouth, ouch!” I was so happy to hear his little voice. It is afterall, what I need to understand his needs. I’m happy he is finding his voice so he can speak up for himself. It certainly doesn’t matter how he communicates, it just matters to me that he can so that I, the alien in his world, can help him.

None of us know it all and it is vitally important that we open our ears to autistics. What drives us emotionally may not always be in the best interests in our children. The head and an open heart must work harmoniously. Autistics.org, is a great site that demystifies autism and speaks for the rights of autistics. I find the site is extremely helpful to me in raising Adam and helping me see him. Here is another quote from In Support of Michelle Dawson and Her Work article:

“Some of us assist parents in finding solutions of how to raise their children in a way that respects their uniqueness, including autism, and does not hurt them, but also helps them grow. We do not think of parents as the enemy, nor as refrigerator parents, but we have little patience for the particular parents who insist we are bad for discouraging harm to autistic children. We are not oblivious to the difficulties involved in raising autistic children, particularly in current societies, and we are not ignorant about possible solutions that don’t involve mistreating people. We simply don’t believe that being the parent of an autistic child, or even loving one, means that a person suddenly becomes incapable of harming that child.”

I like to think about how my son would feel if I told him he had to be “remediated,” which implies, rectified or fixed. Once I think of it that way, I can steer clear of those words and find other ones that reflect better my absolute love for him, and my efforts to learn about autism and accept him for who he is with it. It is important to think of these words because someday, science may just one day find a way to “fix” our kids and then there will be no more like them. Is that what we want?

Insidious harm can most definitely dwell in words.

No Pessimist Ever Discovered the Stars

It is wonderful how much time good people spend fighting the devil. If they would only expend the same amount of energy loving their fellow men, the devil would die in his own tracks of ennui. Helen Keller

There is such dissention among parents about autism. Parents “fight the battle against autism,” “remediate autism,” and use behavioural methods to make their kids more like them. Let’s stop beating around the bush and call a spade a spade.

I understand and empathize with the process of learning about autism and how difficult it is to just accept it -- the way we view the world is difficult to transcend. The important point is to transcend it.

I will reveal how I’ve come to this point on my journey, a journey like every other parent I’ve read, more or less. First, I noticed parents were in some kind of reticent competition to see whose child was “doing better.” I noticed this when my son was first diagnosed – some sort of strange comparison between parents as to whose child was going to “beat” autism first. It was thought that if one child was verbal, that child had an advantage over the other. We all wanted our children to be PDD-NOS or Aspergers, if we had to have a diagnosis at all – anything that eluded to normality, better functioning, and to being more acceptable to society. Catherine Maurice said she “cured” her kids of autism. We all believed her. So, we all wanted to try as many strategies as possible to “remediate” the autism, and most of us went to every conference and workshop imaginable (RDI, Floortime, ABA conferences…I traveled all over the US in search for a way to "cure" Adam as "quickly" as possible).

If I had to describe my journey in all of this, I can tell you right off that not one person could “cure” the autism out of Adam. I hired and brought to Canada every person I could. If I couldn't, I went to the US to visit them personally. The unexpected happened during the process -- another kind of transformation, and a more fundamental and important one at that.

When viewing how little “experts” understood my son, and viewed him as pathology, a set of “behaviours,” or as diseased, I knew that we had taken a wrong turn. When we practiced more social strategies (RDI was a turning point, I must say), Adam lighted up. It was like he was happy to be acknowledged, to play. But the Connection Centre took our full fee and stopped servicing us because I needed to integrate their strategy with ours. Doing an obstacle course three times a day for fifteen minutes hardly seemed like enough. (We never got our money back, by the way). Just before I was to enter Adam in nursery school, Dr. Gutstein told me directly not to: “It doesn’t matter when he enters school,” he said to me firmly. While I agree, it hardly matters in the sense of time, it did in that Adam derives a great deal of satisfaction from being with peers and is a wonderful observational learner. I wouldn't have discovered that if I hadn't put Adam into school.

We still use many modals of teaching today, but in our own way that is successful for Adam. Everyday, we do the hard work of figuring out how best to teach Adam – and believe me we really have to find answers ourselves. I always appreciate a new strategy practised or researched by another to see how we can cull from it. Adam, if I must provide a progress report (seems to be wanted) is happy, he is in nursery school and he will be attending a “regular” primary school -- I am working with that school to obtain the accommodations he needs. I found a school that is flexible, private, and willing to work with us to teach Adam in a way he needs. None of this will be easy, but I find a positive attitude goes a long way with teachers.

Over time, in researching autism and running my son's team as my full-time job, I stopped listening to the “experts” and turned to people with autism. It is through them that I am at a wonderful place on this journey – learning to absorb, live with, and continue to try and understand autism perspectives. I have come to view it as another marvelous way of being and I believe this benefits Adam and my entire family. Adam continues to learn as we respect his many needs. I believe he could have become aggressive, banged his head – and he might if he meets the wrong teacher. I know that it is because we acknowledge his frustrations and help him through them that he is a “well-adjusted” kid – he seems to be developing good sense of self and a healthy attachment to me. There were signs early on that this could have been quite a different scenario. Had I listened to the experts, we would not be at this point today.

Stephen Shore is autistic and obtained his doctoral degree in Special Education at Boston University. He noted that during his day, there were no interventions for autism, with the exception of his mother who did "what she felt was right." (from Reflections of a Different Journey: What Adults with Disabilities Wish All Parent's Knew, p.57). "It is important to do what seems right for your child."

All in all, a parent really has to learn, study, and trust themselves and respect the point of the journey that they are on -- the journey never ends. I know this is hard to take in an era of gurus and genome research – and a view of science as a new God with supposed cures and answers for everything. At the heart of the matter, this all has to do with embedded stereotypes about disability.

Here are some points that I have come to learn and believe on my journey as a parent of a child with autism:

1. All autistic people deserve to be accepted for who they are with autism. They cannot change, and becoming “indistinguishable from one’s peers” should not be the ultimate goal in teaching them. In fact, it’s a horrible and sinister goal.

2. People with autism deserve a right to be treated and taught intelligently and be offered the supports that help them learn in the style that befits them. Not all autistic people learn in the same way; not all autistic people are created equally.

3. Autism cannot be remediated. Period.(Semantics reflects thought so watch your words!)

4. No parent should support any organization that seeks to cure autism. Any one person or organization that uses these terms is fundamentally against the lives of our children. To them, my child is an aberration, and the “enemy.”

5. My child deserves to have patient teachers -- ones that do everything in their power to find what drives him to learn.

6. My child has a right to learn the following: want, wonder, discovery and desire – not simply learn “how to respond.” He has the right to choose and make decisions about his own life and to be presumed competent.

7. My child deserves and will likely go to university. A child most often (albeit not always) lives up to the expectations of their parents. It's all about what we believe. Further, various supports and accommodations at university can be made.

8. Achievement carries no timetable.

9. As a parent, I am my child’s one and only advocate. I do not expect an expert, a teacher, and an organization to do this for us.

10. No Jim Partington, Catherine Maurice, Steve Gutstein, Ron Leaf, Stanley Greenspan and the like is our saviour or will save my child from autism. Some people have talents in operationalizing teaching methods. These people have done just that. There are good things in many methodologies, but not one is “autism religion.”

I highly recommend autism cynics to start reading books written by autistic people. Also, read Reflections from a Different Journey. (See sidebar).

No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit.
Helen Keller

A Happy Day for Autism

The Globe and Mail today put on its front page, an article with Michelle Dawson and Dr. Laurent Mottron from Montreal. They are colleagues "The Postie and the Prof" who have pooled together to dispel all myths about autism. There is a scientific community who believe in the intelligence of the autistic population! "The problem is that autistic intelligence is not measured accurately," Dr Mottron said..."In much of the autistic community -- support groups dominated by parents of autistic children ... is public enemy number one. They want autism to be a sickness that needs to be cured," she said. "They say horrible disgusting things so they can get more money for their lobby groups. They make me sick," Dawson said.

Bravo. Read the Globe and Mail link for full story above.

Autism R and D

Three points converge to a head.

Point One--Awakening: I turn on my blackberry to receive an email newsletter from NAAR stating that their merger with Autism Speaks is completed, and they will together “fight the battle against autism.” Like the war on drugs and the war on Iraq, they got the President Bush’s wife to join in. It’s all sympathetic to the triumphant war hero, and many like to be just that, even at doing so at the expense of others. Even Alan Greenspan has decided to get “bullish on autism.”

Point Two -- Early A.M.: Had breakfast and went to get an overdue pedicure before a short jaunt to see grandparents next week in Florida. Hubby bought me Jasmine Lee O’Neill’s book, Through the Eyes of Aliens: A Book About Autistic People. I read while my feet are immersed in soothing warm water. I consider buying it in bulk for the October show, for my family and friends as the Autism Reader 101. I am nearly in tears at her ode “For An Autistic Child:"

To you in your world,
Locked inside yourself,
An island,
Isolated winds in your mind,
To you, locked inside beauty,
Inside anguish, inside joy,
You live
Breathe
Die
Emotions
too profound to understand,
Little one curled up rocking,
Your floor your world,
Safe,
Just you,
Your little expressive hands,
Like tiny little birds,
talking in flutters,
your little angry snarls
repel a monstrous outside realm,
your beloved treasures:
Buttons
Diminutive faery animals
Smooth wooden beads
Dots of sunlight on your wall
Humming your songs
to calm your anxious hands,
Safe,
Just you,
At one with rhythm,
Your world
only bits of those others
who come and go like currents of air,
barely ruffling your forelock,
Your face a delicate empty mask
to those who see only with eyes,
Those who don’t understand,
your world,
To me,
watching you,
I see myself,
I sing songs for you,
little one, to tell you,
You don’t have to forsake your world to be free.

I hold back the tears behind my new reading glasses, hiding my face behind the book face:


Through the Eyes of Aliens by Jasmine Lee O'Neill...should be Autism 101 Reading. 

“The autistic world isn’t a dark and horrid chamber. It perhaps sometimes appears that way to outsiders. Knowledge and understanding will lessen the fear. For, as an autistic fears new or unknown people, events, places, even foods, a non-autistic may also fear a world inside another that seems incomprehensible…” (p.18)

Fear is the ogre. It is the war-monger. It lives in Presidencies, in massive organizations, and in research that seeks to ameliorate people with autism.


Point Three -- Lunchtime: Picked up Adam and we go to music class -- we haven’t been in two weeks because of how ill he has been. On the positive side, he was watching his peers and especially the teacher – he seemed to be having a good time. On the other side, he preferred to lie down and watch the ceiling in circle, and he didn’t want to be “redirected.” I felt that he was being directed so much at one point, that he wasn’t allowed the time and space to be competent. He preferred to circle and watch like a cat, and when he was ready, he pounced in. The other children were watching him. It is all too noticeable, being a parent, trying so hard to appreciate him for himself, for his autism, to appear on the surface accepting and unaffected, and watching other eyes full of judgment and wonder -- in children as young as three.

“You should not seek to change what you are, or try to do it to another. I also don’t agree with the therapists who try to prevent an autistic child from seeking refuge in her inner world. There are extroverts and introverts. If an autistic person doesn’t actively relate the way others do, so what?” (p. 21)

It all comes to a head -- P.M.: Begin writing and am feeling discombobulated --- Why or why do we have so much fear of people who are different in the world who can persuade the Laura Bush’s with words like “fight,” “battle,” and “war” and a multi-million dollar budget. I call for peace. Stop the fight against my son. Love him and accept him for all his wonderful traits. Let’s start a new Autism R&D project – Autism Respect and Dignity.

Drops in the Desert

One day a family drives to Haifa -- a son with cerebral palsy and a hearing aid. Thirty-six years ago, hearing aids were obvious – wires coming down from the ears and a box against the chest. Mother, father and son had to make a stop. Father got out and two young children, around the age of six, came out of a store and stared at the boy in the car with the hearing aid and mumbled something to themselves. Mother notices and says,

“Do you want to know what this is about?”

The children hesitated, unsure of what to expect.

“Come, let me show you,” she beckoned.

The children approached slowly while Mother took one of the earphones out of her son’s ear. The son couldn’t move, so Mother explained to the children why he couldn’t move and why he had the funny earphones with wires.

“Why did you do that?” asked an observer. “Do you think they will care?”

“It’s like a drop of water in the desert,” said the Mother. “Over time, there will be more drops and then something will grow.”

When it comes to creating tolerance and awareness in our society about disability, we are pouring drops in the desert. It seems like we’ll never get far, that our voices will never be heard, but over time the drops will become more frequent and we may have ourselves one fine oasis.

Dr. Nehama Baum has people with complex disabilities enter her centre. Some are suicidal, homicidal, and incredibly aggressive when they arrive. Most have come from complicated backgrounds, some even abusive – from families who have tried so hard to change them, and like putting a square peg into a round hole, we all know this is impossible. When they enter MukiBaum and are acknowledged for who they are, however, with schizophrenia, autism, and a number of other complex issues, they are able to calm down, learn and attain the quality of life I talked about in yesterday's post. When one is talking about autism in this context, I must also refer to other disabilities. I cannot interchange one for another when it comes to conversations about acceptance.

"If one can acknowledge the other’s voices in their heads and enter their inner world," (referring to schizophrenia) says Nehama, "they feel respected and become easier to reach." No matter what, Nehama wants to enable Identity in some of the most severe cases of disability you will ever hear about. Some continue to paint and have become quite prolific while others have used art as a therapeutic tool.


Jordan, from MukiBaum Centre for Complex Disabilities has 5 diagnosis'. One of them is schizophrenia. 

So why am I going on about this? I do so to continue to raise awareness and will be setting up an organization to do this. I am organizing another big arts event this October -- so far featuring Donna Williams, Michael Moon, Mukibaum patients, and Jonathan Lerman. I will be seeking more -- email me if you’re interested. We are all bricklayers – we need to build the bridge between the world of disability and the rest of us. As Autistic Bitch from Hell states (I love her writing, but hey, can you change your name…you are hardly a bitch), the true meaning of Neurotypical is that there is, in fact, no such thing as normal:

"The neurodiversity movement is based on the belief that there is no such thing as normal when it comes to the human mental landscape. The neurotypical person simply does not exist. Together we display a wide variety of neurological behaviors and abilities..."

Consider that for a moment so we can stop creating that lingual and conceptual divide between “us and them.”

And the drops in the desert story? It belongs to Dr. Nehama Baum.

What Is Quality of Life?

Front and centre of this dialogue about autism is inclusion. At the heart of the matter, understanding and acceptance that people with autism and other disabilities is needed, and as parents and people diagnosed with ASD, we need to keep up aggressive dialogue and awareness-raising so that equality can be achieved.

Too often, “mainstreaming” and “integration” are touted as goals for children with autism without recognizing the missing components that make this successful. As mentioned in recent posts by Autism Diva, and Elmindreada, “mainstreaming” currently leads to bullying because children are not taught to accept difference, and integration is mere lip-service as schools try to integrate by have little idea of how to successfully include and educate children with learning differences. As Adam and I prepare for entry into JK, I think long and hard about what we are in for in terms of prejudice, snubbing by his peers, and his need for a different mode of learning in order to achieve the quality of life I believe we are all referring to.

When we talk about quality of life for people with autism we usually talk define it in subjective terms as “being happy,” “being fulfilled,” “having a job,” “getting married.” While these should still remain goals, we cannot reach them if we do not acknowledge the missing links in the system that result in endless obstacles.

In essence, we are talking about a paradigm shift in thinking – an evolution of how we view disability. While it has changed significantly over the years, we still run into a general concept that “quality of life” for people with disabilities is the physical care of them, while ignoring other spiritual needs -- as caregivers do not believe these needs are at all present or desired in people with disabilities.

So what is quality of life for persons with disabilities? Society, for the most part, still largely shoves its differently-abled members in places where it will not disturb and perturb them, where it will not agitate their homogeneous state. As I noted in my post Smack Dab in the Middle, a recount of my first visit to the MukiBaum Centre for Complex Disabilities in Toronto, my personal prejudices, despite my having a child with autism, were all too notable. In this recognition of my state, and how I arrived to it, I realized how hard we must work to include the heterogeneous members, the disabled members, into our communities more rigorously.

Nehama Baum, PhD and founder of MukiBaum, talks extensively about quality of life for people with disabilities, and the power of art education in embedding a sense of self and identity. In her paper, “Enhancing the Quality of Life of People with Dual Diagnosis: The Power of Art Education" (The Journal on Developmental Disabilities, December 1997), she notes through her research that “[people with disabilities] are seen [by their caregivers] as not being able to make decisions because of a lack of intellectual ability, and more simply, because they do not know how. The perception is that they cannot interact because they are acting out and they do not possess talents because people with developmental disabilities are not capable of creativity. As a result of these long-held beliefs, caregivers have felt that their role was predominantly to care for the physical needs of the people in their charge and to ensure that they comply with what the caregivers perceived to be the `best for them.’”

As I continue to evolve the way I myself view disability, autism, and my son, I consider in this last statement, all the therapies and modes of autistic education that teach compliance because “it is best for them.” Is it? In doing this, are we truly accepting and understanding the difference? While I cannot entirely change my viewpoint (I have my limitations), I will still want Adam to pay attention when he is learning, or when I am speaking, but perhaps I will also be able to adapt and empathize that he comes about things differently.

Baum goes on to define quality of life encompassing these basic human needs:

Being = refers to one who is an individual
Belonging= refers to a person’s fit with his/her environment
Becoming=refers to the intentional activities a person becomes involved in when striving to achieve goals and actualize wishes

We must ask ourselves if the scientific communities and organizations like NAAR are enhancing these opportunities for personal power of those with autism in their use of phrases like “epidemic” and other negative semantics that paint a picture of people with autism as slightly less capable, a little less than human. In preparing marketing campaigns and slogans for the purposes of fundraising, what damage are they doing to the ongoing struggle to obtain “equal rights” and acceptance of people who are different?

“Reiss, Levitan and Syszko (1982) observed that, in many cases, when an individual has a developmental disability, other aspects of his/her life are not acknowledged. Reiss et al. called this phenomenon `overshadowing.’…Such perceptions influenced the development of services that were provided to these individuals over the years (Menolascino, 1994). Programs for people with dual diagnosis tended to emphasize teaching based on the perceived deficits of the individual, without taking into consideration areas other than practical skills for living and adaptive behavior. Such programs gave little attention to exploring and developing the potential of these individuals…Furthermore, this approach has also emphasized behavioral interventions with externally imposed standards of appropriate conduct. No acknowledgement was given to other possibilities. Therefore, programs that accentuated such areas of life as creativity, artistic talent, inner growth, cultural identity, economic self-sufficiency and community inclusion, were not developed.” (p.103)

Organizations like NAAR, Autism Speaks, Cure Autism Now, many behavior analysts (not the evolving ones), many peddlers of autism products, diets, cures, some scientists, even some parents ascribe to a reductionist view of the person with autism – a judgmental view regarding a person’s Being. (see yesterday’s post on Do Animals Have Feelings, Do Autists?). “For example,” states Nehama “if it is assumed by others in his or her environment, that an individual is manipulative, suspicion about the motives of all the person’s interactions may develop. Similarly, when an individual is evaluated as an `aggressive behavioral problem,’ the social environment might become more rigid in its expectations and more restrictive in its allowance of freedom and choice. In turn, this increased restrictiveness could affect the individual’s ability to intentionally choose goals, initiate activities, adapt to life changes, and develop as a person (i.e.; the Becoming area of life).”

When Dr. Joseph Buxbaum indicated the plight of parents, and I hear parents who want a cure for autism because their kids are banging their head against the wall, I consider that these components of enabling a sense of empowerment and self have been ignored in exchange for the ongoing struggle to make our children “like us.”

Nehama goes on to say that while quality of life is a complex concept, with subjective and objective evaluation of physical, material, social and emotional well-being, the holistic approach touches upon many aspects of a person’s life and incorporates both empowerment and choice. (p.99) As much as the objective realm is important (housing, employment, income), “the subjective realm (social support) is comprised of a general feeling of well-being, feelings of positive social involvement, and opportunities to fulfill one’s potential.” (p.102) I do believe that fulfilling potential is the utmost goal for Adam because I see so much potential. As a curator of art, this was also apparent in the work of Jonathan Lerman – how the spiritual side of him is still growing, exploring and is utterly intact (see my side-bar for video footage of the exhibition).

“In order to enhance quality of life of individuals with developmental disabilities…an added effort has to be put into developing opportunities in both the objective and subjective dimensions. In doing this, there needs to be an emphasis on creating a balance between them. This should be a process that is person-centered and person-referenced, but that also takes into consideration environmental realities.” In her studies, art (painting, drama, movement and music) “are psychodynamic therapeutic modalities for the promotion of consciousness, emotional growth, and well-being of children, youth and adults with dual diagnosis.”(p.103)

In my posts Sensing the World Into Existence, and On Becoming a Self, I also explore the a need to enable self-fulfillment, actualization and awareness through sensing, art, and acceptance. As we learn to appreciate and accept people with autism, as we begin to think about and define what we mean by quality of life for people with differences, we will be able, as parents of children with autism and as adults with autism, advocate for the supports that will enable a sense of SELF. Even more important, we will offer people with autism empowerment and choice over their own destiny.

Do Animals Have Feelings....Do Autists?

A recent article in MIND (Scientific American February/March 2006 issue), discusses scientists who debate the issue about whether animals not only have emotions, but are aware of their emotions. It is this self-awareness and reflection that connotes an emotional sophistication akin to humans.

Charles Darwin was the first to devote an entire book on the topic, The Expression of the Emotions of Man and Animals and concluded “striking similarities between human and animal behavior.” Later, reductionists stated that “all animals are merely organisms that follow hardwired, instinctual behavior patterns. They are devoid of feelings.” (p.26)

This statement resonates with similarities to our scientific community studying autism today. From Hans Asperger to Simon Baron Cohen’s mind-blindness theory (see Zilari's post on the topic) to recently Joseph Buxbaum’s rather sinister personal response to my blog, the person with autism is reduced to a subset of component parts. By looking in too closely, some scientists cease to see the forest for the trees.

Antionio Damasio who wrote Looking for Spinoza, cites the difference between social and instinctive emotions. He notes that feelings stem from self-reflection. “Primary emotions include fear, anger, disgust, surprise, sadness and joy, and Damasio ascribes them to many animals….To Damasio and many others, emotions are physical signals of the body responding to stimuli, and feelings are sensations that arise as the brain interprets those emotions…For social emotions, he lists sympathy, embarrassment, shame, guilt, pride, envy, jealousy, gratitude, admiration, contempt and indignation.” (p.27) Some scientists believe that these emotions are largely automatic and inborn – “routinized mechanisms to help them survive.”

Sound familiar?

Feelings, the article states, are born of awareness of the body’s response to emotions and an ability to self-reflect on those emotions. “Damasio theorizes that pygmy chimpanzees, for example, may be able to show the social emotion of pity for other animals but that they do not realize they are exhibiting pity.” (p.28) This sounds like current autism theory “children are unable to attribute the beliefs of others.” Or taken further, people who claim that people with autism are unable of feeling empathy.

In response to that theory, I think about Dawn Prince Hughes who has Aspergers, and her learning of herself through her Gorillas in Songs of a Gorilla Nation. Here she speaks of one Gorilla she names Nina:

“…She stood up and with a flourish snapped the burlap from her neck, then let it billow out before her while she held two of its corners between her thumbs and fingers….She spread it out on the grass and smoothed out the wrinkles. When the material was perfectly flat, Nina eased herself down in the middle of her picnic blanket and looked up to the keeper after letting out a long sigh. She seemed suddenly self-conscious as she noticed the look on my face. It had been an incredibly involved set of steps, and we were awestruck.” (p.126)

Hughes not only observed the Gorillas and decoded many of their complex social and emotional nuances, but she came to learn about herself through them:

“Very cautiously, I tried to apply the things I’d learned from the gorillas in social situations. I tried to put people at ease by acknowledging them with quick sideways glances and smiles – which evolved from submissive primate grimaces and are intended to convey that no harm is meant.” (p.134)

Here is another example:

“…Eventually I showed him the contents of my lunch…He pointed to the bottle. Still feeling stupid, I shoved the bottle against the window and shrugged my shoulders – it wouldn’t fit through, I tried to say. He pointed to the wall where the keeper threw his treats. He knew the trail led to a secret area close to where I sat. He raised his eyebrows. `Walk up there and throw it down to me…what kind of stupid gorilla are you, anyway?’ he seemed to say.

I shook my head and pointed to my seat and notes, a feeble attempt to demonstrate my duties. He turned his body away from me and reached back to bank the window with his fist, pursed his lips, let out a raspberry, and then pointedly ignored me. Occasionally, he would turn to look over his shoulder and purse his lips in my direction. He didn’t need to say it in English; I knew what was going through his mind.

This was one of the first times I remember knowing for certain what another person was thinking and feeling, and that my actions were a direct cause of their subjective experience. Something about the directness of his communication, combined with the honesty of his body language and his emotions, painted a kind of consistent and forthright picture that allowed for a moment of communication that was, paradoxically, more intense and more subtle than that of a human person. It demanded that I stay engaged until the moment had resolved with both of us as participators. It is clear to me that not only do apes have a language that is complex and holistic, but by communicating with us, they illustrate that it may be we who are less skilled at the art of sharing true subjective experience.” (p.136)

This is obviously the problem of humankind – our arrogance and delusion of superiority over other species and even, other humans.

The article in MIND, notes that feelings such as joy arise from the mind’s awareness in bodily emotions. Sumatran “orangutans swing from branches and splash their hands into pools of water for no apparent purpose than just for the fun of it.” (p. 29). Studies show that brain metabolism for animals is not very different from those in humans. In the end, it is still “not possible to prove whether an animal possesses conscious feelings [any more] than we can be sure about what another person is truly experiencing.” (p. 29)

Again, science has no slam-dunk answer. I posit that there are elusive things in life that simply aren’t measurable through fMRI’s, namely the complex process of imagination, perception, emotion and self-awareness. While we may see areas of the brain fired up in response to certain stimuli, the complex ingredients of being human can never entirely be distilled. For to distill them is to reduce humanity to component parts.

It could be said that we have Damasio approach to understanding autism – how people with autism think and feel to an extent that some scientists reduce the person to a mere organism, and an aberration of nature at that. The approach is disturbing when it splices characteristics of our children into little bits, and those little bits are INTERPRETED by the scientist, hence subjective and often wrong.

I will argue that there is no such thing as empirical science -- it has been argued before. Go on line and take a look at some of the research projects going on out there. Every abstract, every project is subject to the scientist’s bias, presentation of stimuli, environment…it is so difficult to obtain an unbiased view. At least an artist, a scientist of sorts, and in my view a better expert of what makes up the sea of mankind, admits to viewing the world through a set of inherited lenses.

Science is still filled with fallibility, subjectivity, and judgment. One theory in science and in art will always supercede another. We will forever be changing our view of the universe. May the arguments continue so that we can stay true.

Happy Valentine's Day

Happy Valentines Day Bubby, Zaida, Serena, Joseph, Max, Maddie, Grandma,Grandpa, and Daddy....I am feeling better as you might see from my jumping 

Autism Kisses

Remember that nanny I was telling you about in my previous LOVE post? Well, she took off. Adam was sick yesterday with the croup and stopped breathing and she just LEFT. I couldn’t believe it. Good riddance, I guess. The good news is Adam is better today, taking Prednisone and breathing a lot easier. It was a scary day yesterday.

My heart breaks. It is because of Adam that she left. For him, my heart gets all ripped up. I don’t care about her. I care about him, and all the people who come in his life and those who don’t stay because they can’t handle “having to play” with him. I know, I know…what did I do keeping a girl like that? A favour to my other part-time, 15-year loyal nanny? Partly. Hope in a human being, always. I always think that people will “come around.”

I should have listened to my instinct. It’s always too damn right. Never fails. Every time I turn my back on instinct, I screw up. I was right. Should have listened to Blink.

Blink, written by Malcolm Gladwell, a University of Toronto history grad, quotes Simon Baron-Cohen’s Mind-Blindness theory in his arguments about intuition. He notes that people with autism cannot “read” minds in the important first-impression stage and are at a disadvantage where intuition is concerned, thereby losing an edge the rest of us have to make split second, profitable decisions (yes, it’s all about BUZINESS -- at least business people seem to be the book's primary audience). People with autism claim that “real-time” mind and body reading are difficult, but are hardly incapable of understanding others. I am always interested in how people with autism claim that they can think of their responses long after a conversation – how the processing takes longer. I suppose there are millisecond clues that are processed unknowingly by me…those clues we can’t break down into little bits, and call intuition. All I can do to perhaps come close to understanding that difficulty are those times when I am stumped by a person’s words – all those witty responses and come-backs I could have said long after the moment is over. Yet I hardly think that experience does the ACTUAL autistic experience justice.

Anyway, my heart will mend. No matter how hard I try to find the right people to encircle Adam, to be part of his world, I am guarded. I only want positive people around him, but I cannot always thwart off the negative, hurtful ones. I cannot always be around.

On the upside, I have written little about the people who do love him, from within and out of the family. Laura, his wonderful therapist who has gone on this journey with me and who is the most wonderful part of Adam’s expanding life; Morgan, Adam’s loving shadow at school who has unshattering belief in Adam’s abilities; Bianca, who is leaving us to have a baby, but who has stood by Adam and felt the hurt along with me; Ellen, Adam’s OT who has been more `right’ about Adam than any psychologist or doctor or “expert”; Stacy, who works with Adam once a week at OT with an unending white smile and more recently, Leslie, who has brought her lovely, calm and positive attitude into Adam’s life and is helping to shape his programs; to Flor, who stays by Adam and who plainly loves him; to Jaclyn who has taught Adam how to “bend his knees”; to Paula and Nancy, his teachers at Nursery School who always go the extra mile for Adam; to my friends who pass no intrinsic judgment and ask Adam to come over and play; to his music teachers who accept him for who he is; to the Snoezelen people who let him relax and just be; to grandparents who take this journey with Adam and I daily; and of course to my immediate family who deal with it all so lovingly. To all of you, a hearty thank you.

I talk too little of these people who make our lives wonderful and hopeful every single day. Without all of you, my optimism and strength would not be possible.

Tomorrow is Valentine’s Day. Hubby is skiing with daughter in Whistler. I am planning a sweet dinner (Pickle Barrel with candles?) with my other true love and reason for being. I didn’t budge all day from Adam’s side yesterday and in between his wheezes for air, I realized again how large love is and how my little heart can hardly contain it. Like today, Adam will surely lean into me tomorrow and give me his little kiss – for his "senses" or for love, I’ll take his “autism kisses” any day.

The Poetry of Autism

It is perhaps difficult to consider the poetry of autism as my son struggles for air, looking up at me searchingly – “what is happening to me?” He is sick and we are on pneumonia watch. He doesn’t have it yet, but he is very ill this weekend. I write in the darkness of his room as he sleeps, not letting my eyes off him.

I imagine the poetry of autism is similarly difficult to comprehend and a parent watches one’s child bang their head against a wall, or bite oneself in the frustration of not being understood. The following premise “the poetry of autism,” is not in any way to belittle or forget these moments. Rather, I consider that autism, it’s way of seeing and sensing the world, poetic. As I read Donna Williams, Susan Golubock, or Larry Bissonnette, their style of communication and use of written language is plump with metaphor and meaning. In fact, it takes me a few repetitious readings of a sentence or a paragraph at times, to fully appreciate the entire meaning. As in poetry, the language of autism sometimes requires unraveling. The language reads sometimes like stream-of-consciousness writing.


Here is what Donna Williams wrote me in response to Adam’s schedule;

“yes, grandparents are really important
Having other attachments
Being flexible about new discovery environments
That’s building WANT and wonder.”“

I want him to to have hands on `doing’ based, tactile, kinesthetic experiences with sound, form, line, light, movement, space so he WANTS to talk about, draw, build, compose as expression brewing from these things…if he chases the world, then the potential is great…so activities should inspire, be about DISCOVERY and wonder and one discovers and wonders when the answers aren’t already jumping out at you, then the understanding isn’t `theirs’ its `yours’ and that builds self and a relationship with the external world as `one’s own world.’ Without this, it is `their world.’”

Donna’s grammar is more intact than some. Her writing leads us from one image to another which leaves my head swimming – one has to dive in to her language to understand the rhythm of her world. It is in joining this rhythm that we perhaps catch a glimpse of the way she sees it.

Even more akin to “poetics” is the prose of artist with autism, Larry Bissonnette:

“Casting teepee posts of happiness in the ground of slaves to big accounts will never make your life better.” (Biklen, Autism and the Myth of the Person Alone, p.169)

Larry’s political views are apparent, as most artists struggle between the call of money versus the call for Truth, which is within our grasp, through art.

“Tapping well of silence with painting permitted songs of hurt to be meted with creativity.” (Biklen, p.170)

The phrases ‘well of silence,’ ‘songs of hurt,’ and ‘casting teepee posts of happiness, ‘in the ground of slaves,’ are all distinctly visual and metaphorical images. Silence is a well. Hurt is a song. Teepee posts of happiness can rise and fall. Slaves are often confined to the ground, work the earth, and are as good as dead.

“Leaping into stream of creativity prepares artist for partnering technique with passion and dramatic vision of malleable for beauty real world. Same beam of enlightened belief in artist’s abilitiy as is shown on president of nation is required.” (p.175)

If the president could tout the artist’s ability here, acknowledge the fluidity of thought and process, might we be able to change the notions of autism? If we shared the same ‘beam of belief,’ like the light of TRUTH, then it is possible.

“My pent-up time in tested for learning patterns of best behavior institution wasn’t entirely greys; it offered personal periods of great relationships with friends with disabilities.” (p.174)

Bissonnette was thought of as mentally retarded so he was institutionalized during his youth. “Tested for learning patterns of best behavior,” tells us that his life was full of tests, and he deciphered through patterns, what was expected of him. When Adam did ABA therapy, he was tested all the time. (I only did so-called ABA therapy for 2 months when we started this journey…thank God.). I could see as well, that Adam could learn the expectation at 20 months, very quickly. But it didn’t teach him anything about his world. James Partington told me once in a conversation over the phone: “all we’re trying to do is teach your child how to respond.” It was that statement that made me close the door to “pure” (whatever that really means) VB and ABA forever. I didn’t just want to teach Adam how to respond, I wanted to teach him how to learn for himself, enjoy the world, garner what he wanted from it, and I still believe and see through him that this is possible for all people with autism, and is happening for Adam.

“Past life of institutionalized person lets in novel ideas. Outsiders to this life can’t go out and obtain it. It’s significant that my artistic style lets me express personal perspectives of autistic but intelligent old Vermonter.” (p.177)

Indeed, Bissonnette is an intelligent “old-Vermonter."

“Producing art is like making puppets on strings because massive edges of inspiration in creating graspable figures get constricted by people’s patterned control of sticks put on strings. Not allowing people with disabilities their patterns of inspiring art through total freedom of expression is like limiting creativity with censorship.

Artists like Larry urgently make situations of doing art into large statements; occupying worlds of public awareness; calling for justice for people without speech; praying for true freedom of splashing language over pricey spreads in people beautiful but superficial magazines; moving down stereotypes of disability and leaving people speechless over power of brushed on with wild, outside the mainstream ideas, steeped in the tradition of autistic compulsivity.” (p.179)


And,

“Look up early lessons in learning about my struggles to communicate and determination of others to make me learn to eat neatly and talk clearly was really most important factor in my rostering of skills. I am seriously past learning swimming in the shallow end of the pool of language but I am ever told `can do’ words by others like Aunt Theresa and that is the sled that pushes me to accept excellence over languishing in mediocrity.” (p.181)

Needless to say, we as parents should accept this kind of equality for all our children, no matter what type of disability obstructs. There is not one person with autism who hasn’t told me that there was someone believing and pushing them to succeed (and that success is different for everyone). It is the parent’s will to accept this equality of excellence, meaning that we all have a right to work towards and attain it, to accept and believe that everything is possible, even with children who have been diagnosed at the “severe” end of the spectrum.

“…I’m not asking that life’s expectations
be changed for me.
I seek only acceptance for the ways I choose to meet them.
Remember what gives joy to you
is often very uncomfortable for me.
The way you would do something
is often not the way that would
enable me to best succeed.
Or more importantly
find pleasure of self-satisfaction
in what I might accomplish.
I don’t experience loneliness
or have the same needs and wants that you do,
so don’t pity me for not having what I don’t miss or want.
I recognize that your life,
with all its complexities
has its own set of difficulties.
Your definitition of accomplishments
and what you find encouraging
go beyond the simplicity
which defines me.
I’m only asking for the same rights
and freedoms you seek for yourself:
To be accepted for who you are,
To be the best you that you can be.
Don’t assume that I want or think or experience
the way that you do.
As nice s you think it is to be you,
I only want to be me.”
----Susan Golubock from “Our Lives in the Universe of Autism,” Women from Another Planet, pp. 70-71

That, my friends, is the sum of all these parts.

Sensing The World Into Existence

What if Adam can sense the world? What if this sense, his intuitive sense even, is more robust than his other senses? In my conversations with Donna Williams, this seems plausible. I have been so focused on visual-spatial skills, but not of Adam’s other sensing mechanisms. As I was disorganized and literally sick to my stomach at temporarily losing some of my vision at the eye-doctor (see yesterday's post "Unfathomable Mind"), I realized how I have come to over-rely on my vision and hearing, and under-rely on my other kinesthetic and other sensing mechanisms. In essence, those of us that share the same faculties have come to view the world through a very narrow tunnel of vision – where other worlds can be experienced through different avenues of perception.

This led me to think about Bruce Chatwin’s The Songlines, which I read years ago. The main character, Arkady, spends time with the Walbiri Aborigines of Alice Springs. The Walbiri sing the “world into existence.” Without having traversed the country, the world doesn’t exist.

“He liked Aboriginals. He liked their grit and tenacity and their artful ways of dealing with the white man. He had learnt, or half-learnt, a couple of their languages and had come away astonished by their intellectual vigour, their feats of memory and their capacity and will to survive. Arkady learned of the labyrinth of invisible pathways which meander all over Australia and are known by the Europeans as `Dreaming Tracks,’ or Songlines to the Aboriginals as `The Footprints of Ancestors’ or `The Way of the Law.’ Aboriginal Creation Myths tell of the legendary totemic beings who had wandered over the continent in the Dreamtime, singing out the name of everything that crossed their path – birds, animals, plants, rocks, waterholes – and so singing the world into existence.” (Bruce Chatwin, The Songlines, p.2).

Does what we perceive really exist? If it exists does it exist in the same way for others? As I consider that a blind person perceives the world entirely different from the way I do, I can easily suggest that we each perceive the world differently. If we believe this, then we must believe that the way people with Autism perceive is differently from us, and even among themselves as a group labeled Autistic. If perception is different, then we must completely rethink the way we evaluate and teach people with Autism. ABA leaves little room for creativity, discovery, and kinesthetic exploration. We are dealing with a group of people who are simply human with a set of different sensing and perceptual mechanisms – entirely valuable, completely fascinating. As I consider this along with my own biases, perceptions and the layers of belief systems that I have inherited through an inflexible world, I am coming to appreciate Adam and his wonderful complexities.

Like the Walbiri tribe, I suggest that Adam is sensing his way into existence. His visual and touch senses, his intuition, his ability to feel rhythm and pattern may be his strategies for making sense of this world and finding himself within it. While we both make the journey to cross each other’s paths, as his parent, I am obliged to SEE him, his world, as much as I hope that he will continue to join me in mine.

Unfathomable Mind

I got my first pair of reading glasses. I call it the perils of turning 40. I went to the ophthalmologist and got two doses of eye drops – the yellow one that burns and then the ones that dilate the pupils.

I have always thought of myself extremely eye-sensitive. I remember as a toddler, my eyes were at the same height of the hooks that held various tools at the hardware store and I use to squirm and squint – the thought of me falling into them and poking out my eyes all too consuming.

Then came friends with contact lenses. I would watch their first trials of putting them in and being unable to take them out of their eyes, or worse, getting them stuck in their lids. Ugh. Just the thought makes my skin crawl. Needless to say, I will never be a candidate for contact lenses. I’ve had wonderful vision all of my life until about a month ago, I picked up a medicine bottle and couldn’t read the fine print like I used to. In desperation, I picked up those drug-store glasses, the magnifying ones, and I could read the fine print much better. One morning, I woke and couldn’t see the TV screen. Thankfully, this was short-lived. Soon after, I noticed that when I read, the words were jiggling on the page.

So I went to the eye doctor.

When she put those drops in, I couldn’t read a thing – not my watch, not my phone. My eyesight was so profoundly affected I couldn’t even dial the phone by myself. This alone, sent me into chaos – an unmanageable oblivion. I couldn’t see the contents of my handbag to pay, I couldn’t find my keys, I was dropping all my receipts from the day all over the floor and I couldn’t find my prescription for the glasses the doc just handed to me. Losing some of my sight for a short time put me into a tailspin. I had a headache from straining to see. I felt sick. I couldn’t work or even watch TV. I had to lie down for the remainder of the afternoon.

My dependence on my sense of sight is all too profound. By losing part of my sight for this short period of three hours, I became disoriented, unable to coordinate the rest of my body, even. I realized how underutilized my other senses are, and this lead me to think about how we under-appreciate the use of other sensing mechanisms that people with ASD may use to compensate for the sensing on which I have come to over-rely. Dr. Oliver Sacks talks a lot about compensatory abilities in the deaf and the blind. So too, I feel that Adam intuits, senses people and his environment in order to manage. I am sight-centric as well as audio-centric. I process primarily through these avenues while avoiding or ignoring and underutilizing my other capacities. In a conversation I’ve been having with Donna Williams about my son, I have come to realize that he may be about 50% meaning deaf and he intuits the rest of meaning through pattern, theme and feel. Donna says regarding Adam: “BUT he’ll likely become such a master at this compensation he’ll do it better than most non-auties ever could…that’s enough to `get by’ receptively, but it’ll be a challenge when people expect their dialogue to be responded to more specifically, more precisely, their instructions followed more accurately.”


The mind of man is the world’s true dimension
And knowledge is the measure of the mind;
As the mind in her vast comprehension
Contains more worlds than all the world can find,
So knowledge doth itself far more extend
Than all the minds of men can comprehend. ---- from A Treaty of Human Learning by Fulke Grenville (1554-1628)

The Changing Face of Autism

“Thinking in Pictures,” is a phrase used long before Temple Grandin did for the title of her own book to describe the way she perceives the world. It is a phrase that is used by many people with various diagnosed learning disabilities, dyslexia, and autism spectrum disorder to describe the way they understand the world and how they think. In order to comfort parents, many artists, writers and scientists were able to achieve a great deal with some form of substantial learning disability: Hans Christian Anderson, Albert Einstein, Thomas Edison, Gustave Flaubert, Thomas Jefferson, Harvey Cusing, Auguste Rodin, Leonardo Da Vinci, George Patton, Ludwig Wittgenstein, William James, Woodrow Wilson, Nelson Rockefeeler, William Butler Yeats, Lewis Carroll and someone we hear little about, Michael Faraday, who Thomas West introduces in his Overview of In the Mind’s Eye.

In 1841, Michael Faraday was recognized as one of the leading scientific minds of Queen Victoria’s Britain (West). Faraday’s visual imagination, more akin to a poet than a scientist’s, his mind’s eye, is responsible “for many fundamental discoveries in chemistry and physics although he hated these specialist terms. He preferred to call himself a `philosopher.’” (West, p.29). His most known achievement was the concept of subtle electromagnetic “lines of force” as well as the concept of the nonvisible electromagnetic “field.” “So sensitive was Faraday to these `lines of force’ that for him they were `as real as matter.’ His powerful visual conception of these ideas provided the basis for James Clerk Maxwell’s famous mathematical equations which, in turn, provided the foundation for modern physics by defining the relationship between light, electricity and magnetism” (West, p.29). They were also the foundation for Einstein’s later theory of relativity. Faraday was horrible at mathematics and could not transcribe his intuitive, visual theories which are the basis for the way we live today – “Faraday perhaps the greatest electrical inventor of all, was completely innocent of mathematics, and he developed his notion of lines of force in a remarkably unsophisticated way, picturing almost like rubber bands (West). There was ambivalence towards Faraday in the scientific community – “showing their difficulty in taking seriously a scientist who was not a mathematician, no matter how original, productive or prescient the scientist may have been” (West, p.30).

By the 1860’s Maxwell, an admirer of Faraday, put his theories into mathematical analysis, which proved to be solid. “Maxwell explicitly stated that the development of his own equations was merely a translation of Faraday’s ideas into conventional mathematical form.” (p.31).

In terms of thinking in pictures, Thomas West states, “One might wonder whether the time for this mode of thought has entirely passed, or whether there is much value to be gained by returning to it to deal with some difficult contemporary problems….A partial answer to this question might be obtained by reminding ourselves that `sensitivity’ to `lines of force,’ also seems partly to characterize the thought of Albert Einstein. Einstein’s `productive’ thought was intensely visual in nature…” (West, p.33)

It is interesting now to note that Faraday expressed a learning disability, Einstein, possibly dyslexia or ASD (I’m still not sure whose poster child Einstein really is) and a notable bunch of leading thinkers had tremendous difficulty in typical learning environments. In reading about dyslexia and learning disabilities in Thomas West’s In The Mind’s Eye, I am reminded how many a disability is really a trend, perhaps a fabrication of our day in the sense that we identify absent or weak skills in people while ignoring strengths on the basis of what we value.

In the late 1800’s, in a literary society, and until more recently, people with dyslexia were considered “stupid,” or cognitively delayed. While many dyslexics will attest that they expend an enormous amount of energy compensating for their deficit, in other words, disguising it, it is also well recognized that people with dyslexia have a number of significant or special abilities, primarily visual-spatial ones. In the 1980’s more prominent people began to reveal their dyslexia. “As dyslexia and learning disabilities have become more clearly identified with persons of high intelligence and ability, these conditions seem less frightening and people are less reluctant to admit the problem and seek appropriate help.” (p.46) Today, we would hardly consider dyslexia a major “disorder” requiring a “cure.” We have learned to appreciate the abilities and have come to learn to teach people with dyslexia so that we hardly think twice about it.

It is on this last point I will posit that Autism is the new Dyslexia. It is the New Trend in the disability realm -- being touted as an elusive disorder, a “behaviour,” and prescribed limiting modals of teaching, while a multi-modal approach would respect the unique learning styles and perceptions of the Autistic. I also propose that Autism, like Dyslexia-Past, is a construction of our society -- our expectations of what is considered “typical” behaviour and performance, as defined by our economy and educational system. In our economy we value language – our world is filled with marketing symbols and verbal messages. Language is also the sine qua non of development if we take a look at modern development “scales” as one example. Classrooms are taught primarily with text books. For children who do not think literally, the education system is quite a challenge. Further, as West notes, “our educational system, in focusing on remediation of certain disabilities, may be dealing with only half a condition, and he least interesting half. Somehow, a way needs to be found to deal with a very broad range of skill levels to address both unusual abilities and special difficulties in the same individuals” (p.41). We often note the people in history who have succeeded despite their disability, when we should be noting that they succeeded because of it. The value of particular abilities is time specific. Today, we value a literal and literary society. We value a homegenized society at the expense of possibly losing a huge pool of gifted, but unusual people.It is because of the fact that the brain is “wired” differently, for the reason that some people with ASD sense the world or see in pictures, that many major achievements have been realized.

I have argued earlier in this blog, and West seems to agree, that computerization of current systemized professions like law and medicine, will change the face of our economy yet again. If we have a society that appreciates visual-spatial intellgience, and an economy that rewards it, this may change the face of autism all together.

Autism and its prevalence of diagnosis because of changes in the DSM IV in 1993, has become a new economy unto itself – full of interventions, tests that are akin to snake-oil salesmen preying on unknowing and terrified parents. As a parent, I would like to see less hype in the Autism communities, and more work being done in appreciating our kids for who they are while obtaining the support and strategies they require. I prefer that my child not be treated as an elusive specimen requiring reams of data.

“Einstein first played with images in the visual right hemisphere, the apparent source of new ideas or perceptions of order, possibly relatively independently of conventional thought, current scientific understanding and education….Such observations as Einstein’s occur frequently in the literature of creativity. The concept of two modes of consciousness has been cropping up in the medial literature for at least a hundred years, particularly with reference to artists, musicians, and composers. What is new is that research on the two hemispheres of the brain has yielded such substantial evidence that serious investigators have been forced to reverse a major trend of scientific thought (behaviorism) and not only recognize once again, the concept of consciousness, but also entertain the concept that there are not one but two major modes of consciousness, each fundamentally different from the other – one that we know a little about, the other that we know almost nothing about.” (p.26). In observing and appreciating my son's perceptual abilities and trying to understand them, I believe I am coming closer to understanding autism than many a scientist.

I feel we have lost sight of the big picture. I believe that noting intelligence – those who have made remarkable achievements because of the special wiring of their brain, need to be mentioned for the sake of understanding autism and learning disabilities in general. By remembering these marvellous stories of success, people with autism may be able to gain access to education they require and deserve. It took society to realize that prominent people of their time had dyslexia for it to receive different teaching approaches and strategies. I believe the same has to happen with autism.

I also believe that we may be focusing in too closely on autism – putting it under a microscope – to the detriment of those who have been diagnosed with it. “Sometimes if you focus in too closely, too early, you run the risk of losing sight of a larger pattern, one that is only visible by stepping back a distance, to get a view of several variations on a theme, a view of the pattern of the larger whole.” (West, p.80). I think all parents can relate to viewing every little motion as something to do with an "autistic behaviour," rather than a typical course of development. It is also ironic that in doing so, we may be losing sight of the wonderful processing that is occuring but which we cannot see or understand.

I can hear the gasps as I write this. Yet, I think we all have a lot to learn from history. We all seem to acknowledge that Autism’s landscape -- it’s shape, our perspectives on it and more specifically, our children -- is changing from day to day. Let us all keep an open mind for the benefit of our children.