Are We Listening?

The audience waved their hands in the air – the deaf sign for waving. There were others who rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in the front and squealed in acknowledgment when the speaker said, “just because you don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other setting, this highly intelligent, non verbal autistic eleven-year-old may have been asked to leave, or others might have stared, thinking that he didn’t think of anything at all. Yet Drake kept doing this. He sat longer than any other eleven-year-old I’ve ever met and made his noises in acknowledgment of the important points.

“I am fortified by being here,” he wrote on his Lightwriter.

I sat in the room and wished Adam was with me, his soft five-year-old hair brushing my jaw, snuggling up to me as he always does, and then taking breaks to jump up and down. Yet, I felt comforted in knowing that he would be there next year, and the year after that. I felt comforted that all of these people are him years from now, and how privileged I felt that they were paving the way, for it is a tough way, like swimming up a rapid flowing stream.

It is rare to sit in a room with so many other autistic people, some walking back and forth in the lunch room humming to themselves in a heightened perhaps even ecstatic state, where I can only imagine in other less accepting settings, would be frowned upon. When I came to squeeze into the small space where this young man hummed to deposit my lunch tray, he politely moved away to make room for me, extremely aware despite the fact that others would believe otherwise.

When I saw him next time in the leisure area, he was asking others to play a board game with him. Other autistic kids were hanging out together, and sprawled themselves out on couches in front of the TV, not unlike other teenagers. Around the grounds, people wore badges that indicated if they wanted to talk, if they would only talk to people they knew, or if they did not wish to talk at all. There were many times I wanted to flip my own badge that indicated the latter – as I am a person who likes to absorb and observe, yet have been taught to socialize and be diplomatic and suffer from a compulsion to keep that impression going. Although it’s a skill I’ve acquired, I still find it exhausting. I wished that those badges existed at the many functions I have attended, where most people pretend to be something that their not, or interested in things that others say that they actually have no interest in at all. I consider all the wasted time I’ve had to spend doing "small talk." and all the time I spend in explaining life as we know it to people who don’t have the time to understand.

The heat was oppressive this time of year. Yet, we were shaded by trees. My hair unkempt and my skin moist from the humidity, I unraveled. I could do what I needed to, to think. We were free to lie down during lectures, or roll up and be comfortable on the otherwise uncomfortable frayed wool couches -- remnants from the 1970’s. No lights were on in the summer heat, the hard-working garbled hum of old air conditioners tilting precariously in the windows of the lecture room.

The atmosphere was as honest as the discussions were. We tried to figure out how to manage all the issues confronting autistic people today, how to give another message to parents that there are more options than they are aware of – because they don’t hear it when all they hear about is ABA (in Canada specifically). The atmosphere was welcoming, where fear and confrontation were strangely absent. Strange because it is a sad reality of autism politics these days – where some non autistic people never get exposed to disabled people to hear the real views and issues. It was strange as it was relieving. This was autism, and it was comfortable. I didn't have to be appropriate, I could say when I had to leave without a guilty fuss. No one will judge me here. And no one will be judged.

It’s called Autreat. It’s a place I’ve never felt or experienced before, and I will want Adam to come again so he too can be fortified. Adam’s fortification is what’s tantamount here, as I try to raise him so that he knows who he is with autism, amidst a world that doesn't understand it or explains it inappropriately. It is important that he understand himself as not a defect, but as a person. It is why we as parents cannot accept misery rhetoric, because no matter what level of “functioning” (that term means nothing as it has no bearing on either intelligence or awareness), no autistic child should have to grow up in an inhospitable environment that threatens their self-worth. Inhospitable and unsafe environments are those in which we seek to normalize and reward normal responses to tasks where the autistic response is never acknowledged, rewarded or accepted, thus valued. By never rewarding an autistic person for being autistic, we threaten their self-esteem and identity. Most will grow up being confused because every well-intentioned therapist was so “nice” to them.

We have to train our therapists and clinicians to understand autism – because most of them currently do not. They do not yet understand how an autistic person learns. They turn to operationalized methods that all seek at this time to make the child not autistic, without valuing the autism. DRI and RDI are also designed to “create a mind,” or have a child "play normally" to which the autistic audience gasped in disgust. What are those "gurus" implying? That the autistic people who could sit and listen, and contribute, either verbally or in writing need to re-create their minds in a fashion that suits the rest of the so-called "normal" population?

I surmised that many parents are and are reluctant to give up ABA becasue they may not understand that there ARE so many options and so many opportunities to educate and for a great quality of life. The latter is what hopefully unites us. What disunites us is the definition of what that quality of life entails – a life with or without autism. I seek the former because I have seen that we can live a good life, thank you very much.

Quality of life is not determined by whether or not you drive a car, but rather, what you make of your life, and your attitude. Autistic people are capable, and how can we express to parents who only see -- particularly those whose children who are more profoundly affected by the disabling aspects of autism – sensory issues, anxiety, no spoken communication – that their children are there and aware.

How can we express that the most important thing – our children’s right – is to be who they are, but to provide AC (augmentative communication) in the absence of speech, instead of trying to force them to talk when they cannot.

How can we express that it is the teachers and clinicians who must learn how an autistic person learns, and not expect a typical response that can render an autistic person a robot. (All an autistic person ends up learning is to respond the way the instructor wants so that they can get the hell out of there).

How can we express the dangers of therapies that try to teach in a way that is not natural – for our benefit so WE can feel satisfied that the child has responded – that the child may in the future as a result of such approaches, not understand who they are?

This is the most important aspect. Know who you are. Accept your autistic child for who they are because this will allow them to know themselves. Pave the way for acceptance and yes, teach. But learn first. Learn how an autistic person learns and keep trying to adapt until you find the method that clicks with your child. That will constantly change.

Be a parent, not a therapist. Do not treat your child as a project, but rather, treat them and raise them as a child. Model actions so that a child can learn. Do not expect typical answers to “what is this?” and other typical questions. Find out ways to pull out what the autistic child does know. Do they know and answer better on the computer? Then use that. Accept all forms of communication, for they are valid and real. We are all obligated as parents to find the AC that works best for our children. That is their right to have over and above all those other therapies and monies wasted on “behavioural therapies.”

Allow breaks for autistic children to re-focus. Truly seek to understand their sensory needs. Do not offer artificial reinforcements, like “good talking!.” They are fake and the child will know it. Accept echolalia as sometimes the only language a child can retrieve, particularly in moments when they are overwhelmed, and then listen to what their body language and faces are telling you.

Most parents want the best their our children. The difference is in how we regard autism – a medical disease, which it is not, or a disability with social implications, in other words, we have to deal with the societal barriers that obstruct the opportunities for our children. We cannot accept the latter. We must accept autism and move on with the real barriers – the attitudes that will continue to proliferate segregation.

We need to be advocating for inclusion in the school system and for the accommodations that need to be made to acquire that. We need to educate others as to the value of doing this – for all children, not just the disabled ones – in cultivating sensitivity and understanding. We need to teach our children how to advocate for themselves – yes, even the non verbal ones. And for those who are more profoundly affected by the more disabling aspects of autism, we can seek the help of other autistic individuals to be mentors and to advocate for the services that do not degrade and oppress others.

The one thing we must do is to make other parents aware that there are so many options about which they hear little or are belittled by an ABA movement that continues to espouse inaccurate facts about ABA under the guise of false scientific “proof.”

We need to stop participating in genetic research studies which determines only “prenatal risk” and threatens the existence of autistic people. This research is done under the guise of providing “better and earlier interventions,” which are non existent. What babies need is love, support and engagement like any other baby. The only purpose of this research is to determine genetic risk factors. We do not hear about research that seeks to help autistic people be the best autistic people they can be.

We need to redirect our attention to merging help (with the more disabling aspects of autism) with respect (respecting the autistic person’s right to exist) and realize that there is life beyond an over-simplified “cure.” Further, helping the more disabling aspects of autism (anxiety, sensory issues) can exist outside of a "cure" for autism.

I urge every parent (but for those who visit this blog, I bet I’m preaching to the choir), to actively seek out the alternatives and become proactive in not accepting strategies that change your child to “appear normal” because they will ultimately be very damaging to their self-image as teenagers and adults, and we will have greater problems to contend with later. There are options outside of ABA which takes time from you to actively watch and listen and respect your child.

Above all, as Anne Donnellan said in 1984, “make the least dangerous assumptions” about your child. Or as Douglas Biklen said, “presume competence.”

“The least dangerous assumption states that in the absence of absolute evidence, it is essential to make the s assumption that , if proven to be false, would be the least dangerous to the individual.” (Zach Rosetti and Carol Tashie from the Communicator, Autism National Committee Newsletter, Inclusive Education edition.)

The constant banter that autistic or non verbal people who do not look you in the eye are “not there” or “not aware,” or “cannot speak for themselves" is an extremely dangerous assumption. All people can speak for themselves in many different ways.

Are we listening?

The Robin In The Window

There is a robin that keeps banging into our window. For nearly a month now, it must be, but I’ve really noticed it lately. I thought the robin would be gone by now, failing to get into the house. Perhaps, I thought, he sees something he wants to get to in here, or more eerily, as Margaret Laurence once said in her novels “a bird in the house means death in the house.” Is some kind of death knocking at our door?

I heed "hidden" messages.

I am beginning to get worried about the bird. He seems no less affected by his beak-banging. I considered that something might be “wrong” with the bird. But knowing better, I turned to google to look up the meaning of the behaviour.

Birds, particularly robins, repeatedly bang into windows because they see their reflection. They are trying to fight the “other” bird for the territory. It’s perfectly understandable given the bird’s perspective. And then, I came to think about the irony of my interpretation: of fighting against our own shadows and came across the term egophrenia as I found written by Paul Levy: [It is the ] ‘ME disorder,’ for short. If ME disorder goes unrecognized and is not contained, it can be very destructive, particularly if the person is in a position of power." (Please note that I do not agree with how he makes references to "illnesses" in his article, but the over-riding idea of it is interesting in the context I have quoted here).

Apparently President Bush is egophrenic. I would venture a guess that he is somewhat delusional, and a collective manifestation of the way North Americans have come to think about their place in the world. We see it in everything, including autism advocacy. We have come to live the big lie, chasing the perceived enemy, that which lies outside of ourselves because we no longer want to take responsibility for what we do and how we contribute to injustice and the world in which we live. Autism Speaks is egophrenic and not self-reflective in the least at the moment. It is but one example.

We fight what we create. We fight ourselves, as the robin does its own reflection. If a polemic gets created, it does so with the creation of an “us” and a “them.” Fighting autism, fighting in the name of getting children services by creating an evil which is the other– the evil which is our own true reflection.

The robin reminds me of pushing myself constantly to avoid kitsch and rhetoric -- to consider myself as contributing to the polemic. The robin reminds me that what is out there is me. It is us.

Now what do I have to do to change it? What about all of us?

Joys of autism expressed by other parents

You know, I don't get to everything as quickly as I should, so I was quite surprised when I came across this today on About.com by Lisa Jo-Rudy: The Joy of Autism: A Mother's Day Gift. I hope it encourages everyone every day.

After reading it, read the post just beneath on happiness.

Have an enlightened day.

The Assumptions About "Happiness"

The days in Toronto are bright and we received Adam's glowing report card yesterday. He belongs now to a very inclusive school -- a special and rare place from what we've experienced and heard about schools. Adam and I went for a picnic in the afternoon, and generally enjoying a little more time together as we wait for camp to begin. This child of mine observed by science as the child with "faulty wiring" who in fact, has many abilities.

As I appreciate the moment, despite the little sleep I've been getting this week, I stumble onto the stoop to pick up The Globe and Mail while drinking instant coffee because my coffee maker broke at 6 a.m., I turn to "Are you Happy? And does it really matter?" by Leah McLaren. I am not happy that I can't get my cup of java at six because I had to let the dog out and I otherwise would have slept in. In Leah's way -- her healthy dose of pessimism -- I would say no, happiness doesn't matter. As quickly as the days ebb and flow, our moods and circumstances can change. One day, we receive the glowing report card, the next, someone may put up barriers to Adam's access into another program. It's not all fun and games. It's just life. What we have today, we lose tomorrow, I once heard, and I try to remember that everyday.

"Joy of Autism" is meant to be a statement about our need accept what comes our way. Autism is neither good nor bad. It is just the way it is like life just is. So, if you've come looking for self help, you've come to the wrong place. The Joy of Autism is a place to work out how we can live and surpass the barriers that confront my son and individuals like him. My son is where joy does reside for me. Quietly as it should. The blog title is just a simple statement that I love Adam as he is, because in doing so, we can live a little more peacefully. Because in doing so, he can live a little more freely -- at least within the confines of his home. Because when we're together, its hugs and smiles and yes, struggles at times. And we try not to fret too much over them. It is a statement that we accept people and listen to how they feel about their oppression with whatever race, religion or disability community they belong. And it is a strong counter statement to those who engage in fear mongering.

With that joy and acceptance there is also anger. Anger that others ignore autistic people and the value of my son in other settings. Anger that it is so easy for people to let roll of their tongues that he is as if he's "in his own world," without a second thought. Lack of thought exists everywhere. It exists every time we never question a statistic, or a rhetorical line or even consider another point of view. Different cultures will correct us with our thoughtless use of prejudicial phrases and assumptions. Autistic people are correcting all of us all the time -- and yet, there is a public and even parents who think that because they are trying to help their children, the use of such language is okay, without critically thinking of the how it effects an entire community. Even worse, they think they are more correct than the autistic adults our children will one day become.

As Phil Schwarz said in his essay, "Building Alliances: Community Identity and the Role of Allies in Autistic Self Advocacy" from the book Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum, a book I highly recommend, he talks about aspects of Personhood, or identity are shaped by autism. Being an autistic person himself with an autistic child, he says that these aspects,

"are not intrinsically disordered. They may be atypical. They may require significantly different teaching and child-rearing approaches. They may even put us at an ergonomic, economic or social disadvantage in conventional society. But they are not all intrinsically defective. Often it is society's intolerance or lack of accommodation, rather than anything intrinsic to the autistic characteristic itself, that renders the characteristic disabling."

He also characterizes autism not just about atypical individuality, but acknowledges that many autistic people experience characteristics of autism that "are intrinsically disabling, sometimes profoundly so," and cites lack of oral or written communication and lack of self-help skills and effective judgments about safety issues as examples. Sensory distress and impulse-driven behaviour are other characteristics. But this is how is defines the problem of reconciling the identity aspects of autism to the disabling characteristics in the way that society handles it right now:

"It is difficult for parents and family of autistic individuals who are profoundly disabled in such critical respects to see autism as anything BUT those critical disabilities. This is particularly true of parents of children who appear to be developing normally up to a certain age and then begin to lose those skills. It sure sounds and feels and is lived like something that is 100% bad and, therefore, worthwhile attempt instead to eradicate 100%.

However, even autistic individuals who are profoundly disabled eventually gain the ability to communicate effectively, and to learn, and to reason about their behaviour and about effective ways to exercise control over their environment, their unique individual aspects of autism that go beyond the physiology of autism and the source of the profound intrinsic disabilities will come to light. These aspects of autism involve how they think, how they feel, how they express their sensory preferences and aesthetic sensibilities, and how they experience the world around them. Those aspects of individuality must be accorded the same degree of respect and the same validity of meaning as they would be in a non autistic individual rather than be written off, as they all too often are, as the meaningless products of a monolithically bad affliction."

Based on these extremes -- the disabling factors and atypical individuality, Phil says, they are more so disabling because society devalues the atypical aspects and fails to accommodate the disabling ones.

That my friends, is what we are working towards -- a place where the group we seek to "help," we listen to. We do not get offended when we are corrected by the group. We are the parents. We have a duty to listen because one day, our children may be the same people correcting others tomorrow.

In closing, about assumptions, I post the article written by Ann MacDonald a few days ago in the Seattle Post Intelligencer:

By ANNE MCDONALD
GUEST COLUMNIST

Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents' request, given a medical treatment called "growth attenuation" to prevent her growing. She had her uterus removed, had surgery on her breasts so they would not develop and was given hormone treatment. She is now known by the nickname her parents gave her -- Pillow Angel.

The case of Ashley hit the media in January after publication of an article in a medical journal about her treatment. It reappeared in the news recently because of the admission by Children's Hospital and Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only with the consent of a court.

At the time of the initial publicity about growth attenuation, Ashley's parents wrote on their blog: "In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."

I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley's.

Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damage at the time of my breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne, Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk.

Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."

Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. St. Nicholas offered little food and little time to eat it -- each staff member had 10 children with severe disabilities to feed in an hour. That was the roster set by the state and accepted by the medical profession. Consequently my growth stopped shortly after admission. When I turned 18, I weighed only 35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall.

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years.

In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value.

After I left the institution, an X-ray showed that I had a bone age of about 6, a growth delay almost unheard of in an 18-year-old in the developed world.

I was not only tiny but lacked any secondary sexual characteristics (a significant difference from people with naturally small stature). I was a legal adult, but I couldn't see over a bar, much less convince anyone to serve me a drink. I didn't see small stature as desirable.

My new doctors said that presumably I had the growth potential of a 6-year-old, so my new caregivers and I worked on increasing my size. My contribution was to eat everything I was offered. It worked. I started growing immediately, reaching a final height of 5 feet and weight of 120 pounds. That is, I grew 18 inches after the age of 18. Along the way I lost my milk teeth and reached puberty.

At the age of 19, I attended school for the first time, eventually graduating from university with majors in philosophy of science and fine arts. "Annie's Coming Out," the book about my experiences that I wrote with my teacher, was made into a movie (Best Film, Australian Film Institute Awards, 1984.)

Unlike Ashley, I'm now an ordinary height and weight -- but I don't get left out, nonetheless. Though I still can't walk, talk or feed myself, I'm an enthusiastic traveler. My size has never got in the way, though my hip flask of Bundy rum often causes alarm at airport security. I love New York for its galleries, its shops and its theaters; hearing Placido Domingo at the Met was one of the highlights of my life. Interestingly, Ashley is also reported as enjoying opera
-- maybe it goes with the turf.

Many otherwise reasonable people think that growth attenuation was an appropriate treatment for Ashley. In an Op-Ed piece in The New York Times, for example, moral philosopher Peter Singer wrote: " ... there is the issue of treating Ashley with dignity. ... But why should dignity always go together with species membership, no matter what the characteristics of the individual may be? ... Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."

Ironically, I'm a friend of Peter's, and I've discussed ethics and disability with him previously. Despite this, he obviously didn't call me to mind when he wrote about Ashley.

This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means "brain damage which isn't going to get worse." It's occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley's doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty.

When Singer wrote that, "Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognizes them. She is expected to have a normal lifespan, but her mental condition will never improve," he has accepted the doctors' eyeball assessment of Ashley without asking the obvious questions. What was their assessment based on? Has Ashley ever been offered a way of showing that she knows more than a 3-month-old baby? Only someone like me who has lain in a cot year after year hoping that someone would give her a chance can know the horror of being treated as if you were totally without conscious thought.

Given that Ashley's surgery is irreversible, I can only offer sympathy to her and her parents. For her sake, I hope she does not understand what has happened to her; but I'm afraid she probably does. As one who knows what it's like to be infantilized because I was the size of a 4-year-old at age 18, I don't recommend it.

My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own.

Anne McDonald is a writer and activist for the disabled

Autism in Canada: Our Brave New World?

I am disturbed every time I pick up a copy of an autism society magazine and read the comments by our "leading" autism researchers. I've just got to be honest here. I want to work with others in order that we create better opportunities and a world of respect and acceptance for autistic people, and I know this post may seem undiplomatic. But it's got to be said. We have to up the ante in our Canadian efforts to understand autism.

As the founder of The Autism Acceptance Project, I receive emails from parents who find The Toronto District School Board, unaccepting -- not accommodating autistic children on playgrounds and not providing family-appointed shadows (right now, an EA is ascribed to a child). Shadows are simple solutions -- if the family feels comfortable and has a good personal rapport. Shadows can be a child's best advocate. They can ensure our children's safety from abuse where many of our children are non verbal. Many of our kids are academically strong and should be in safe schools -- this does not mean segregated ones. It means schools that appreciate the special need of the child and that value diversity and inclusion. What we have is a drive to conformity -- as school teachers cannot handle the numbers of students in the classroom, or may lack an enthusiasm for teaching under crowded conditions.

And I don't hear anyone fighting for our kids. I hear a lot about ABA -- a goal to make the child conform and dangerously perceived by politicians to be a quick fix to make children normal so they don't have to support or pay for them later. Yet, people with disabilities can and do contribute to society and sometimes needs support well into adulthood. These issues never get addressed in the same fashion.

I hear about finding the location of the gene(s) for autism and preventing it. What is disturbing is this trend to ignore the culture of autistic people, and a failure to recognize the real issues facing our disabled population and how they feel they should be provided access and what would be helpful to them -- as they see it.

I am reading Autism Society of Ontario's Spring 2007 edition of Autism Matters. There are too few interviews of autistic people and how they feel about the policies being made by non autistic people. The magazine also contains an article titled "Unraveling the Mystery" on the research of Peter Szatmari and Stephen Scherer. Now, Autism Society of Ontario wants to be a "non partisan organization." I was asked to speak at their recent "acceptance" conference because of that position. Yet as I consider the politics of autism and this so-called non partisanship, there is something very missing -- the largesse of opinion and articles by autistic people, the absence of which makes the magazine, partisan. I am asking ASO and like organizations to raise these issues, as they are the prevailing issues in autism today. It should defend the rights of autistic people first and posit those issues in a dignified way. While we as parents have a voice, it must stand alongside the population to which our children belong. Not everyone will agree, but we should never discount the opinions of autistic people just because it doesn't serve our cause, feels uncomfortable or because someone tells us we've got it wrong. Rather, we might be asking ourselves the question, what might we learn and what can we do better for our children by including autistic people now.

Also missing is the dialogue about the research and how autistic people interpret it. Here is a quote from the article I found particularly "partisan" and disturbing:

"Glutamate increases neuronal activity and plays an important role in wiring up the brain during early development. It provides further proof that autism is caused by faulty wiring in the brain, and pinpoints this pivotal neurotransmitter system as a prime suspect."

"Prime suspect?" Are genes criminal? Proof of "faulty wiring?" Have our Canadian scientists read this article? More importantly, if they have, do they even care? Will my speech at the ASO be a drop in the pond of prevailing ignorance and drowned out by a non autistic faction who does not want to address these issues at all? Or can we work together to merge help with respect -- to encourage autistic people to participate without the threat of "being treated?" or being considered too "articulate" via computer or otherwise to "be autistic?" Can we provide safe environments for autistic people to participate without being chastised (many of them today are unfortunately attacked by some parents).

Let's take a look at the ultimate goal of research as found in the CAIRN newsletter:

"Preliminary findings have zeroed in on Chromosome 7 as one hot spot for continued research. But while results are promising, there remains much work to be done. Researchers hope eventually to enable clinicians to biologically diagnose autism, allowing children to be diagnosed earlier than ever and leading to more effective treatments and better outcomes for them and their families. Knowing what causes autism may even allow us, one day, to prevent it."

Without paying any attention whatsoever to how autistic people feel about "being prevented," instead of helping and respecting them, do we march towards our Brave New World? I risk writing anything because to speak about this is like taking away a right and a freedom to choose. While I can't say I want to stop "progress" (right, like I even could), I want to BEGIN discussions that include autistic people here in my backyard and I hope others will do the same. I want to be heard as one of the many parents who actually wants to see my child respected and not stigmatized by faulty rhetoric and biased science. I want Adam to feel at home anywhere and possibly relate to others who have similar experiences.

Consider the startling difference from Szatmari's team in approaching genetics research for the purposes of understanding autism by Dr. Laurent Mottron et al:

"There are no available convincing data that autism with vs. without overt peaks of ability, with vs. without overt speech or overall autism vs. Asperger Syndrome, differs at a genetic level. Even language abilities cannot be used to distinguish autism from Asperger Syndrome, as written language experts are as representative of autism as oral language experts are representative of Aspergers."


Perhaps, having read the latter, we can consider what science can do in helping autistic people contribute to society as autistic people. Can you help with sensory issues and anxiety whilst keeping personhood intact or does genetics research seek to throw the baby out with the bathwater?

The Autism Acceptance Project hears from more parents every day who are disgruntled with this. This is not about preventing, it is about celebrating and accommodating. It is not about determining what is "faulty" any more than I can say that being freckled is faulty. I hope to make it a little more obvious of the subjectivity of science -- that it can exist.

If a researcher tells me "I've seen families who have been beaten black and blue by their children," (a quote by Wendy Roberts in the National Post article "Redefining Autism") to justify the prevention of autistic people from being born, er, okay...genetic research, I want to visit that family to see what's really happening there. Many times, parents need a lot of support to understand their children and to live with what is instead of expecting what will never be. By doing so, we can appreciate what is possible and what is achieved. Many times, I've seen single parents with autistic children become very frustrated because there is already a lot of stress and the child not only feels that stress, and enacts it, but may also be under pressure to do things that they cannot instead of working with strengths to achieve what can be. The latter isn't about becoming normal, it is about becoming the best we can become. And it's about our attitude.

Ask any member of the disabled community and I think they'd agree. It's not about becoming like someone else, it's about being yourself without others telling you what you should be.

"Disability inspiration is a form of propaganda that glosses over oppression while simultaneously reassuring normals about the superiority of their ways." John B. Kelly found in Amanda Bagg's bag of quotes. Let us also be careful of sentimentalizing disability.

Donna Williams

Those of you who have read my blog for a long time know that I used to quote Donna Williams a lot. I have to thank her because she was really the first autie I ever read who began to change my perceptions about autism. Not only that, she is a marvellous writer and as you will see here, an artist. Enjoy this video made by her. I like the picture of her as a baby twirling a twig. Looks just like my Adam:

Redefining Society's Response to Disability

I wonder if most people don't get it. I don't believe that all parents with autistic children get it. I know this is an unpopular way to speak these days in autism. I'm supposed to feel compassion about how hard it is and all. I'm supposed to talk about the financial burden on everyone. Autism Speaks drives the agenda for how we think and talk about autism these days so much so that I'm afraid to use the word to describe Adam in public places. I prefer to say he has trouble talking. Because if I say autism, people will look dire, talk about his mutated proteins or that he watches too much tv, and presume things about him. The stats come out and it's the same old party-line.

I don't like parties much. Not the ones where I have to conform, where I feel uncomfortable being me. I'm getting too old not to be me. And it's not really like me not to get in there and want to answer people's questions about autism. I really do like honest questions. I must admit, however, that there are some days that I just don't think it's worth it in certain situations. With Autism Speaks the new "Goliath" and autistic people a small David (but we all know how it turns out), autistics represent such a small community, and it is difficult to be heard with such, as irony goes, NOISE.

But you see, it's not that I don't have empathy or compassion. It's just that I try to direct it wisely. A good place to start searching where to direct "help" in autism is by turning to the disability community-at-large and disability studies departments at universities world-wide. Let's take a look at my home-town university Ryerson's website to read the following paragraph on the School of Disability Studies project:

"More traditional approaches to disability focus on ways to rehabilitiate or `fix' people with disabilities. In Disability Studies, we focus on society's definition and response to disability."

The school talks about social models of disability rather than the medical model and this is where we need to go. Autism Speaks and like organizations do not go there. The Autism Acceptance Project does. It did when it sought to "redefine autism" with "The Joy of Autism: Redefining Ability and Quality of Life" event last October. Autistic people are always going there. But not many people are listening because they are being drowned out.

Many parents (we have five hundred members now at TAAProject in less than a year), seem to believe this is important.

Why? It is so because many people (we know many of them) will try and make the rights of autistic people seem ridiculous because, as they will too often tell you in fact sheets and press releases, that living with autism is really horrible. They will make the "acceptance movement" or "autism rights movement" seem like it is non existent and made up by a faction of non autistic parents or, as we hear much too often, by autistics who are not really autistic because they can think and type on a computer. They sound convincing. They talk about going bankrupt because they have to do a therapy to make their kids not autistic anymore for to not do that therapy will send them all into the autistic "abyss."

Autistics will argue they are going bankrupt because they have chosen to try and turn their kids into something they are not instead of fighting for inclusion and an empathetic society where our kids receive a good education, no matter what the disability. Our parent advocates here in Canada will frighten others that to not pay for this therapy -- autistic kids will have to live in institutions, they say -- instead of working towards a society that has just and decent living arrangements for those who will need extra assistance, and focussing on what individuals can contribute. We need to fight for a quality of life in many different types of living situations, that people with disabilities have a right to beyond daily care.

Our parent autism advocates ignore a vast array of academia, advocacy by the people who are disabled, and history. David Revielle writes in Abilities Magazine that disabled individuals have been part of changing the way we view "madness." He was part of the group that developed the documentary film Working Like Crazy in 1999. (See this link here for National Film Board link.) He teaches a course at Ryerson called "A History of Madness" with Jim Ward. He says in his article: "Jim and I are walking a trail blazed by Geoffrey Reaume. Following the publication of his book, Remeberance of Patients Past: Patient Life at the Toronto Hospital for the Insane 1870-1940, Dr. Reaume taught "Mad People's History."

Reville talks about the courses' increased popularity and how the agenda has evolved to changing the subject of disabiltiy -- to the social response. They bring in psychiatric survivors creating community by addresing their needs for employment and a decent income.

We have these resources in autism, but few people are listening. Autistics.org has posted many important articles. Michelle Dawson writes in her blog Autism Crisis and No Autistics Allowed. Joel writes in his blog, NT's Are Weird. And of course, Amanda Baggs, who is consistently accused of not being autistic. And there are many more autistic individuals who belong to self-advocacy organizations. The list is longer than I am providing here of autistic people who write books, blogs, do artwork or participate in these groups in some fashion. I do not hear of one autism society anywhere who acknowledges any of them.

It strikes me everytime that people write their bias on the page with pride. From hating something to pretending to advocate on behalf of others because "they can't speak for themsevles," prejudice against the disabled is intolerably tolerated.

I would recommend that any doubtful person turn to the many disability studies departments at their universities -- the hub where change really happens. Or, you can attend the talk Doing Disability At Work: A Symposium on July 5, 2007 which discusses how disabled people fare as learners in mainstream workplaces. Contact Ryerson for more information.

Happy Autistic Pride Day

Autistic Pride Day is celebrated on June 18 each year. It is a day of celebration of people on the Autistic spectrum.

Many families around the world celebrate in a simple way, but there are also numerous public events. There are also gatherings of autistics so that many can communicate together in real time via their computers.

Autistic Pride day is an initiative by Aspies For Freedom. This autism rights group aims to educate the general public with such initiatives to end ignorance of the issues involved within the autistic community.

We are proud in the Wolfond household of our son, Adam. We are overjoyed to celebrate this community and everyone's diversity any day.

The Implosion at Autism Speaks

We all know the recent debacle between Katie Wright and her parents. Not only do I present on negative portrayals of autism for the purposes of raising money, but now we have to ask another question about responsibility.

Today, in the New York Times, "Debates in Autism Strain A Family and Its Charity" make the debate public. As it should be. Every charity must be scrutinized for responsibility from its public. The way money is spent, what the real directives are and so forth. In the case of Autism Speaks, it has been apparent from the time of its inception and their involvement with Diedre Imus, that the family believes in environmental and mercury causation and will continue its relentless search for these causes.

It's not that I'm against science. It's there to prove or disprove theories. But I'm having a problem with how we focus on an issue and where the money is being spent. I have a problem only searching for genetic causes because it seems like a scientist's masturbation. I mean, knowing the genetics of autism will do nothing to really change my son's life. It will prevent autistic babies from being born, and we know that 80-90% of Downs Syndrome fetus' in Canada are currently aborted. We know we have a high abortion rate for children with a cleft lip! Choosing life and death is becoming a little too easy, perhaps. But will genetic research help determine what medications are safe and life enhancing for an autistic individual who has anxiety issues, or other health issues? How can we ensure that autistic people live a full life with autism?

Looking for environmental causes may be a prudent way to cross it off the list of speculative assumptions, but it is creepily becoming more consumerist than responsible. Believe me, I've got nothing against protecting our environment. I've lived in Europe and recycling and public transportation existed for years before it did in North America. Yet, there is something eerie and kitsch when "saving" the environment sells products and becomes the CAUSE of everything.

We know that environment doesn't CAUSE Downs Syndrome or deafness. Perhaps if we investigate this for autism, we ought to start looking for every other disability out there too and I wonder how many in those communities might start laughing. Yet, Autism Speaks, after its gala with Toni Braxton and Bill Cosby, announced that the money raised would be funneled to the search for environmental causes. Apparently, the audience was aghast. They did not approve of where their money would be spent. The Wrignts get to dictate the agenda of a public 60 million dollar charity. But that's not all, NAAR and Cure Autism Now are fighting too.

I think a little bit of temperance on the vaccine and environmental front needs to be applied here -- because if we don't we get to hear things like this. And this deserves scrutiny:

"The boy did not respond to behavioural therapies [who really does?] the Wrights said, leading to their daughter's desperate search for anything that might help. 'When you have the sense of hopelessness, and don't see results, you do things that other people think is too risky.' Mr Wright said. 'The doctors say, 'Wait for the science.' But you don't have time to wait for the science.'" Todays quote in the New York Times. Brackets mine.

If I were to read into that quote knowing what I know now about autism, is that hopelessness is an epidemic in the autism community, leading parents to do some dangerous and desperate things like Chelation therapy and behavioural therapies -- all for the purposes of making the child not autistic anymore. (Behaviourists might disagree, but you just can't make ABA more palatable considering where it comes from). To the public, curing autism sounds reasonable, for to be autistic or disabled is regarded as one of the worst plights of human existence.

Instead of valuing and seeing the child who is right in front of us, we fight autism and waste our days. We waste all the important living and learning days of our children. The one thing I know for sure, is when we stopped fighting and started living, Adam began to change because he became happier. He is autistic and he can learn. Yes, I have to do a little more and yes, are lives are not exactly the same as families who do not live with a disability, but it's okay. We have a good life because of our attitude. We LIVE despite these debates.

Now back to responsibility. What of the autistic population who never gets interviewed in articles about autism in the New York Times? Why are they never interviewed about the very organizations that seek to represent them, but don't? When I read articles like the one today, there is something/someone so painfully missing and it is those real voices of autism -- these people who have to live with organizations like Autism Speaks that tell the public that autistic people are "not really there," or incapable of expressing their views or that if they are able, they are not really autistic. The media ignores the fact that our autism community is another community belonging to a larger disability community -- the largest minority in the US today. Most people living with disability are described as incapable or "having the intelligence of a ___ year old." Is that right?

Yesterday, a relative said "did you hear about the study their doing about protein mutations?" I held my breath. I should have said,

"How would you feel if someone referred to you or your proteins as a mutation?"


And I don't see any journalist talking about this. About social responsibility. About helping to eliminate discrimination and bias. About living happily with autism despite the ignorance.

Here's Action for Autism's take on the issue. as well as a more lucid discussion about science and perception by Dr. Gernsbacher. I do believe in doing science. But I believe we have to do it responsibly, meaning that we acknowledge the personhood, humanity of autistic people and as Dr. Gernsbacher so eloquently said, replace the language used in scientific papers with humanisitc language to represent autism. If we were to put ourselves in the place of "mutated" language, we would be offended. What is the science that is life enhancing for autistic people? What will we learn that will help autistic contribute to society as autistic people?

[Postscript: When I say that Adam changed it does not mean that he didn't "come out" of his autism. He was always a happy child. It means that he became happier and less anxious when we didn't subject him to therapies that sought to change him fundamentally and when we focussed on letting him learn as opposed to correcting him. As the years pass, my decisions in this regard are confirmed. Adam has learned to also teach himself and I watch him spell words now and use phonics to decode. He plays games with me that he makes up. He does so many things. He does not always say hello to people and needs time to be alone in crowds. But I have learned never to underestimate him or to worry about the way he does "behave." My biggest priority is teaching him how to communicate in ways that he can. So for us, this means using the computer.]

More Literature ABA Advocates Prefer You Not Read

Yesterday, I presented at another conference: Autism Society of Ontario's "Building a Community of Acceptance." I am there to show that there is another side to all of this debate, and what is always most striking to me that people are not very aware of the dialogues going on by autistic individuals -- for years. They are not even aware that there is a disability rights movement. They are not aware of the information available. We must not believe in fact sheets point blank. We listen to some loud voices and the news, and shy away. But the information MUST be available and it must be read. So, for my readers anyway, I urge you to begin to read for yourselves and make up your own minds. Today, I'm including two other sources of information. The first is by Amanda Baggs, written in 2004 below the synopsis I embedded into video:



"The people on the Internet are still there, and many of them are still saying the same things. Here is what one of them said recently:

'Without intensive intervention, many individuals diagnosed with autism will eventually wind up in institutions, unable to even feed or toilet themselves independently. To avoid providing this intervention, all the while assuring the individual that we are doing this in his/her own best interests, "respecting dignity and individuality," strikes me as a bit hollow.'" Read the rest of her article HERE titled Past, Present, Future.


And read this paper "A Tale of Two ABA studies."

A Resposne ABA Parents Don't Want You To Hear

Ralph Savarese, author of Reasonable People: A Memoir of Autism and Adoption, recently wrote this to our "autism advocate" in New Brunswick, Harold Doherty. It was in response to this post about Dr. Morton Ann Gernsbacher. Mr. Doherty decided not to print it. I guess it doesn't "fit" his cause. This is a problem if ABA parents will not listen to what autism really is, and of course, not listen to autistic people at all. In fact, I remember talking with Brenda Deskin who refused to read Donna William's books because she said that "Donna Williams isn't really autistic." Government officials and the public NEVER get an accurate view of autism from these parents alone because they refuse to discuss, acknowledge and listen.

Mr. Savarese wrote to Doherty:

I invite the father who insists on varying degrees of competence in autistic people (and who clings to labels such as "high functioning" and "low functioning) to review this new study on mental retardation in autism.

Here's the link: http://www.willamette.edu/dept/comm/reprint/edelson/
The study is VERY provocative because it underscores the historical presumption of retardation in autism and the almost complete lack of empirical data supporting such a claim. New research by Laurent Mottron (Dawson's partner) has found, by changing the testing vehicle, intelligence in even the most apparently disabled. As the father of a boy with classical autism,I can tell you how easy it is to be fooled by autistic behavior, to extrapolate from it all sorts of things: retardation, a lack of
empathy, etc. By teaching our son how to be literate and how to type on a computer,we have found a rich, complicated human being all too eager to connect with us and others--a boy, in fact, who is now a straight "A" student at our local middle school. If you saw him, you'd say he was "low functioning," but he's not. He could easily--with a computer--contribute to a scientific study. If the science on mental retardation in autism is weak, why not practice what progressive educators call the "presumption of competence" or "the least dangerous assumption"? Then, we might really find out who is incapable of doing the things Professor Gernsbacher and Michelle Dawson talk about. Hope is a dangerous thing, especially with all of the quack cures out there trying to deceive desperate parents. But hope seems justified--hope and lots of hard work: TEACH LITERACY!--precisely because the science on autism has been so bad historically.

Sincerely,

Ralph James Savarese, PhD
Grinnell College
Author (with my son) of Reasonable People: A Memoir of Autism and
Adoption

Printed with permission from the author.

Being an Unperson in Canada's Autism Advocacy

May I direct people back to Amanda's insightful posts and videos on "Being An Unperson" as parent advocates and Mr. Eugene Levy march on without autistic people at all:

Autism: A Call for A National Funding Strategy

Today in the Globe and Mail, Brenda Deskin's son Michael, autistic, is a cousin to Eugene Levy. Levy, who has, according to the article, "only met Michael for the first time yesterday," decided that "this is a good fight here." He is holding a press conference in Toronto today to plea the government for ABA to be funded under medicare. He says in the article, "it's breaking families -- the emotional trauma and expense alone." Is this sounding tired and familiar?

Dr. Wendy Roberts is in support of this ABA movement and is quoted as saying "she has seen grandparents lost their homes and spend $80,000 a year for treatment." Not sure where Dr. Roberts stands these days since I had my last meeting with her. On the one hand, she wants to celebrate autism with art shows, on the other, she wants to treat autism with a treatment offensive to autistics. This desire to please everyone isn't accomplishing a thing. What we need FIRST AND FOREMOST to be just society, is to include autistic people in this dialogue. There are so many and we have them at TAAProject.

The article also starts with the line that autism "is no laughing matter," relentlessly and unethically making comparisons of autism to cancer. Hayley Mick, the reporter begins the article thus:

"When Canadian comedian Eugene Levy things about autism he pictures a scrawny kid. The kid is dwafed by other kids, who have names like cancer and diabetes and are protected by weathy foundations. And when they need treatment, those kids are swept into the loving arms of Canada's health care system."

Adam...scrawny? Dwarfed? Afflicted with a disease akin to cancer?? HOW DARE YOU IMPOSE YOUR SORRY "ADVOCACY" and metaphors to paint a pathetic picture of my beautiful child! How dare you create such a scary picture that it becomes increasingly difficult for our children to be treated as children and not someone's "client" or "project." And if they get included at all, it seems like a miracle.

Once again, Deskin and her partners completely ignore what the autistic community has to say -- namely autistics and the many parents of adult autistic children who are tired and offended by her constant referencing of autism as nightmare. If we are living a nightmare, she is perpetuating it through a basic violation of excluding autistics from her brand of autism advocacy.

She does not include any autistics -- at all. It is clear that she thinks that they have no right to be in "her fight." She does this for herself, not for autistic people.

She does not include other parents who do not want ABA for their children as the sole choice of education for their children. Deskin is trying to legislate what is right for others when we do not feel it is right for us.

She ignores the fact that Lovaas, to which she lovingly aligns herself in reference to ABA treatment, never apologized for his use of aversives. She ignores how that infamous 47% "success rate" was actually achieved. She is factless for her own convenience. For quick references that will lead you to more reading, read: www.autismcrisis.blogspot.com; No Autistics Allowed and Dr. Gernsbacher's paper: "Is One Style of Behavioural Treatment `Scientifically Proven?'"

She ignores an immense disability rights movement, to which autistics belong and the fact that the disability community in North America makes up the largest minority group who are TELLING US ALL what it is like to live with a disability, and what they need.

So, does she serve the greater community? Does she take into account that we want our children to be included, to have lives filled with joy, to not be confronted by stigma and stress that she continues to perpetuate, to have access, to live in safe environments, free from maltreatment that ABA has been at fault for? There is no such thing as "good ABA and bad ABA." It is time to stop using the term as a shorthand for a multitude of services, and acknowledge that there is a toolbox out there with many different tools that we dip into that is unique to each child. Above all, we need to acknowledge that autistic people are people first. They deserve help with our utmost respect -- not sensationalized propoganda that draws on heartstrings and elicits pity.

Families deserve to be supported, they deserve to be empowered to make their own choices for therapy and education. They deserve access. We need a strategy that encompasses all of our needs. And if Brenda Deskin wants her ABA therapy, let her have it. Just don't make us have to take it. Let's build a tool box that we construct by:

1) including autistic people in helping us understand and build appropriate education and self-help skills programs by revealing their early experiences;
2) build on what was successful for them;
3) build an anti-ableism strategy so that autistics and other disabled individuals have access and acceptance;
4) include all parents to work alongside autistics to develop generally accepted multi-model methods that honour each individual's learning style (this could be OT, SLP, Play, and one-to-one education/assistance as well as family appointed shadows and/or service dogs, assistive technologies, vocational training, autistic mentors, humane and supportive community living environments, and more)

Overall, let us work together to state that YES, our kids deserve more and we need to focus on our to support autistic people and their families. Our kids are great and have lots of potential given the patience of others and a change of attitude in terms of the fact that disability is part of human experience.

In other words, we need to get away from this manner of advocating -- that excludes the very people it seeks to "support" -- and talk about what autistic people really want and need by including them.

Deskin, et al -- are you ready for a reality check? It's not all about you. Most of us are coming out of the dark ages. Will you decide to stay there? If you do, please don't drag the public back into those days where the disabled weren't treated as human at all. Having said that, I do hope to include everyone in much healthier strategy that includes autistic people in developing.

I'm sorry, Mr. Levy, that you have been dragged into this "living nightmare" of Deskin's "advocacy." I'm certain had you really done "your homework" beyond Deskin's propoganda, you would see that many autistic people and families find this method of "advocacy" and this one-size-fits-all approach, drenched in human rights violations and exclusion of the very people they seek to "support," is not the way we all want to go.

Is It Just Me?

Or is the summertime aware of being tired? Does it beckon our being mindful of it?

The leaves flutter silver in the soft breeze -- I want a hammock to watch them.

The warm breeze feels like silk against my arms -- I want to lie and let it cover me.

I want to breathe the ease.

I want to take a break.

I want to dance under the stars.

I want to take lazy walks.

Adam hugs me and lies with me in the yard. We fall asleep. YES! this is summer. It is sweeter when he lies with me, his head leaning in the crook of my arm.

It's what it's all about. Taking time, sometimes -- taking care of ourselves. Letting our children also experience this break from having to "do" just like we do most of the year. It's a relief to stop and see the life all around me. Hopefully we'll all be able to do some of the same.

Happy Summer. (31 degrees celcius and sunny in Toronto)

A Nice Transition

We have found a school that respects Adam. He is self-motivated, interested in what others do. He cannot talk to his peers yet, but he is respected by them. They say hello Adam in the morning, and talk to him normally. His teacher noticed today that Adam was interested in a math activity using beads. She said "Adam, it looks like you are interested in this so let me show you." She showed him how to do the activity, but today, Adam was interested in the materials. She noticed this and allowed him to explore and then simplified the activity so he had a starting point. She did not say that Adam was doing it "wrong" or that it had to be done her way. She was guiding him in what he wanted to do himself. Adam, since he began this school in February, is eating foods I've never seen him eat at home -- carrots and cucumbers being two of them. He watches his friends and wants to try too.

Before Adam went into class, he was a little upset today. We sat on the stair and I held his hand without saying anything, hoping that my calm would calm him. It did. I did not push him into class. I did not escape the situation thinking that I had to toughen him up by pushing him into class. I waited to see what he wanted to do. Five minutes later, he got up and walked into his classroom and proceeded to have, apparently, a great day.

I tell this little story of our morning because Adam's shadow and I were remembering the day when Adam was only twenty months old: she came from an ABA background and we also had a verbal behaviour goal of 80 mands a day. She with-held reinforcers like temptations -- "the promise" as it is known in ABA-speak. I look back at video footage of some of these sessions and cringe at myself, my husband and everyone who was so patronizing and demanding. As I watch Adam paint with a therapist, he is talking, saying some words I can now understand, imitating, and doing things really well. But back then, we didn't think it was good enough at all and we pressured him for more. We thought that he had to do things a certain way. He was just a baby.

Our shadow for Adam has been with us for nearly four years now. She says she has learned so much along the way. I was reflecting this past weekend at how she and Adam really understand one another, and how he trusts her. They are like real buddies.

I do have some regrets but it was not that I did not do enough to ameliorate his autism -- the regret I have is that I listened to too many other voices and ignored the child who was in front of me, doing beautiful things that I just did not recognize because he was not "like other children."

It's a nice transition, this ability to SEE what's in front of us, not lost in the sea of opinion.

Everyday Kitsch -- it happens in autism too

Kitsch was a term used in late nineteenth to early twentieth century Germany to define bad art – art that sentimentalized everyday experience or “that appeals to beliefs and emotions encouraging vanity, prejudices, or unjustified fears and dubious successes.” Literally, kitsch “implies an artistic creation ‘that makes use of refuse taken bodily from the rubbish dump.’” (Catherine Lagg – From Kitsch: From Education to Public Policy).

We hear the term kitsch applied to the art of the Nazi era, if in fact Hitler’s own pastoral art. Visiting my ancestral home (that is the home of my grandparents who had adopted my father just before the war from Poland or Sweden – we do not know exactly wherefrom. Thus, I can here extract myself in a way from the uncomfortable notion that I actually belonged or came from German culture, while understanding it deeply), I was surrounded by kitsch. Be it the pictures of the mountains hanging on their walls, to even the typical smell of Kuchen coming out of the kitchen, to the idiotic dirndl Oma made me wear on Easter morning, I was personally inundated with kitsch, if not a living, breathing example fetching coloured eggs and repeating Danke Schoen too many times to appease the generousity bestowed on me by a grandmother who needed constant praise.

Taking it further, Hitler destroyed or expelled any artists that provoked the status quo. Perhaps this is when the term was best known. As Dadaists challenged society, Hitler himself was threatened. Only art that resurrected Greek mythologies or pastoral settings that celebrated German “cultural” life, that is, the Deutsches Volkes, was permitted in Hitler’s Germany. In fact, a good German home hung the picture of the Furher himself. Imagine eating dinner with a nice painting of Hitler watching over you – iconoclized for your adoration.

Kitsch is kitsch because it is simple and predictable. Art, however, is political. Almost always. It is so because, as Lagg so adeptly describes: “artists build on and play with their audience’s sense of history, culture and reality…art portrays relationships that exist among individuals, groups an inanimate objects….Art invades a person’s sense of self to literally play with their mind. Weaving through a person’s consciousness, art occasionally teases, reaffirms, jolts, disturbs, challenges, and pulls threads of deeply held convictions and beliefs.”

Most importantly, as I reminisce about what art is and what its purpose is, I reflect on the autism “debates” and consider that we are all at risk of becoming kitsch in the autism world.

The easy use of symbolism says Lagg, “gives Kitsch immense political utility. Kitsch can simultaneously provide psychological comfort and reinforce a host of national mythologies. It has immediacy that art must avoid.”

Autism organizations use many symbols and historic methods of raising money (that old cure word comes to mind as a type of easy access to heartstrings), that work extraordinarily well. One-liners that are supposed to summarize and encapsulate this so-called “struggle,” are kitsch and so too, I am wary that an organization that promotes autism “acceptance” is similarly at risk.

Jargon like “mercury moms,” or “curebies,” is also becoming dangerously close to generalizing categories that parents come to refer to as “camps” in the autism arena. In any subject, where we see a condensation of the “good guys” versus the “bad,” we are creating a simple narrative rather than addressing its real dimensions and complexities.

Acceptance of autism is such a loaded concept, that most people aren’t sure how to accept it. The term gets lost into some idealized notion of a pacifist or perfect world. Idealized, it assumes that we are all going to just get along, holding hands to achieve our dream of accepting diversity. (I am pointing at myself for using symbols of hands and holding with the caveat that I do like hands as a symbol of creating things – and equally, they are capable of destroying). It’s a nice dream, but this idea of living in a world that never questions, where we happily skip across the field to the sunset together is just well, kitsch.

It is why I will not aggressively expand The Autism Acceptance Project into yet another autism charity, for I do not yet know how it will unfold. It is the reason why I called it a project, because I am aware of how easy it is to fall into the traps that charities always seem to fall into – having to appease a corporate funder, or a group of people who believe in one ideology. Instead, TAAProject was established to continue the dialogue -- in different forms be it through art, film, lectures and other creative ways. It is not an easy one-step to success organization. It is an organization that hopes to raise, provoke and discuss.

We will always have disagreements and we should. We should always question each other. We should feel uncomfortable and alerted when we begin to oversimplify the world, no matter what “side” we believe we are on – be it the line “we must fight the autism epidemic” to “nothing about us without us.” I like the last line in principle because it means that autistic people must be the people who lead the autism dialogue. But even that term might be too exclusive. Once we start believing too heartily in something, we end up being ignorant of the many other truths out there. While the Nothing Without Us line may provoke, as it should, I can also see the way it is used not completely applicable to the real complexion of the autism community.

“Kitsch differs from art by being a powerful political construction designed to colonize the receiver’s consciousness. As such, kitsch is the beautiful lie. It reassures and comforts the receiver through the exploitation of cultural myths and readily understood symbolism. But Kitsch neither challenges nor subverts the larger social order because it must pacify, not provoke.”


No question that we need to do more of the latter. We need to consider that diversity means also accepting that there are many different realities within which autistic people live. By forming The Autism Acceptance Project, I have at least, met many more autistic individuals with differing views. It means that I seek the real truth from a bulk of autistic individuals and not a few. It means I do not listen to non autistics as the source of autism information and experience, but I do acknowledge that parents are the prime caregivers of their children and have a real stake in how they manage the lives of their children. It means I acknowledge that some parents and even autistic adults are having a harder time than others. One autistic adult once jested me when I wrote the post “The Learning Curve To Acceptance.” She said, “acceptance is not a learning curve.” I waffle on that one. I agree, to accept just is. It is free of debates, and ponderings of “how to accept.” And yet, society is on the learning curve of opening their minds to what acceptance really means in autism. It is no different than learning to accept women in the workplace. It is no different than accepting the black community not as inferior, but as equal. Acceptance did take activism and education.

The acceptance of autistic people must not be subverted to kitsch. It should not depend on “easily invoked symbols to address political dilemmas” and limit our thinking.

If I edited everything I received The Autism Acceptance Project would be ridiculous – another camp with self-made belief systems, and we’ve unfortunately experienced this with the ABA movement here in Canada. A women with Aspergers sent me a long letter. She gave me permission to print it here, but I will only give a few lines of it. She said:


Not all individuals with autism-aspergers speak for me either.

I am tired of people who are excelling at levels way beyond me proclaiming to be MY VOICE. They bask in the glory of their autism and that is fine for them. I am still fighting for my system to give me the HELP I NEED. This makes me sound judgy but...

AM I THE ONLY PERSON WITH ASPERGERS WHO WANTS HELP WITH ROADBLOCKS THAT MY AUTISM CAUSES ME???????

I do believe in all of you and many share but where are the autistics advocating for help? I mean the right kind of help. I know it does not exist but it never will if we don't fight for it and then again its the ones in the middle who may wish for it but cannot fight for it like others because we are not at that level of functioning to be able to consistently advocate as some others are able to do…

Note that I do not think functioning levels are all that important as some can excel in different ways throughout the spectrum. I guess I mean that some of us just don't do as well as others and that is just a reality. We may be more severe in the fact that day to day life is tougher. Something like that. I am not exactly sure how to use the right words there…

I will not write a blog that only discusses autism rights WITHOUT including MY RIGHTS for help with things I need help with.

For those aspies who do not need that help and seem to think we are all the same, I feel they hurt those like me who wish to get help. I mean the good kind of help not the curebie kind.

I see 2 things with people with ASD who are doing well:

1: They either had a major support system and lots of help for sensory issues, social skills, etc or...
2: The are possibly higher functioning in a way that has not left them unable to maintain a quality of life that works for them. They can excel in a field etc. I cannot focus well enough to do that. Maybe with the proper help I could but that is not the reality in my life and probably not in others lives as well…

I have learned more about my autism from the parents out there because they cover the issues their children face and that helps me. It helps me more than some people with ASD simply hanging out and saying "respect me" etc. Yes that matters but I have only met a few with ASD who have actually given me information that I could use to learn to build a better life for myself or better understanding of my ASD. I do not mean in a cure way. I am sure you know what I mean when I talk of help. No I don't want ABA'd…

I saw in your previous blog that you ask them to join the Board of TAAP and they say no. I get that. To them the task is too hard - too overwhelming. The organization and sequencing skills needed and the focus needed may be an issue for them. Maybe with a little help a little bit at a time some of them can learn to take it on. Not all at once but one little step at a time. I hold back when I feel I am expected to know ALL of something at once. If given a chance to be on a Board such as TAAP, I would be honored (if I lived in Canada) but would only do so if given the "help": needed. Yes I have autism and I can not do it alone. Isn't that what inclusion is all about? To include to me is to love one as they are to educate yourself on their disability but also to be real and to give them the necessary help when needed and let them go when they do not need help and if they grow in some areas where help used to be needed they may not need it any longer. They may excel after they learn to do their job. It’s the patience to assist them in the beginning that can really be the factor in where they are later on. This varies for all of course.

I want today's adults and our little Adams of the world to be included. I want Adam to get what he needs now and in the future. If he needs help, I hope and pray he gets it and does not get ignored as so many of us are. I hope he does well but I am a realist and if he needs assistance we need a world that is willing to give it in the best possible way for all of our Adam's.

I read how bad it is in Canada. Not better here Estee. In my town I just was told they want to diagnose an ASD boy schizophrenic. FOR CONVIENENCE. They will not even asses for ASD. Why? It’s because they would need to learn something new and they are too lazy to do that. Do they care about this boy? NO that is obvious.

I go for a SSI review in 2 weeks. I am about to get reviewed by someone who knows nothing of ASD. Go figure. You see the war is offline and it sucks. I can not then get online and say that it is ALL OK. It is not All OK. I am so happy in some ways and yes I love the title of your blog. But it is not joy all the time. I cry daily at the lack of help out there for those of us who want it. Then again "The Joy Of Autism" is my only blog I read daily. It has become a part of my very strict routine.

Thank you so much and maybe someday I will join you all in my advocating kind of way.

What is striking to me time and time again, is how many different autistic voices there really are out there, and that we need this time to listen and digest. Autism cannot be conveniently packaged into puzzle pieces or colourful ribbons, although I would much prefer if I had to, to wear the latter, more positive symbol. It cannot be “treated” in one way or another. Like an individual, it is complicated. It is diverse. It cannot be tamed to behave in a way we want so that we can completely understand. If we wait or try, it may even be too late.

Truth is uncomfortable. There are many truths based on an individual's experience. Truth about autism must acknowledge the greater community -- even the one that we may find offensive -- and seeks to settle somewhere in the middle as a means of living together. While women and black people may have rights, they are not totally "accepted." That is an unfortunate truth. At the risk of sounding kitsch, let's stick together and work towards a more accepting world, for the work never seems to have an end.

On Schools And Services

Joey's Mom inspired this post today.

Here is an article that denies services to a person with High Functioning Autism.

Mary Ann Chambers, MPP of Ministry of Children and Youth Services was on CBC Radio when she announced additional funding for ABA and other services. She said that ABA "was more for the lower functioning autistics." I went on air after her but didn't get a chance to say this.

Who is low functioning? Who gets to decide who must be "treated" with a government endorsed therapy? While I understand that there is some effort into providing more multi-faceted supports beyond the ABA model, and that yes, I don't mind if people personally decide that ABA is something they want to do (as the ABA today is a mix of various therapies in most cases and is no longer purely ABA and thus should be called by a different name), I do have a problem with the government telling autistic people how they SHOULD be treated. Knowing the history of "treatment" of people with cognitive disabilities, we must address the issues with such "treatments" as it has affected autistic people themselves. Michael Moon, one of TAAProject's board members, recounts the "treatments" attempted on him when he was young and non verbal and how he describes very autistic, despite his ability to articulate today.

We are learning that designations of HFA and LFA are not accurate enough, do not describe autism sufficiently. Amanda Baggs, a "low functioning" autistic woman knows how to communicate using a keyboard. This whole dialogue we are hearing over and over again, so old and out-dated, that individuals with less ability to function are not intelligent, are not aware, is really getting tiresome. An inaccurate understanding of autism leads to maltreatment and a bad education using the model I describe often here. Here is what the University of Montreal has to say about so-called "low functioning autism."

"There are no available convincing data that autism with vs. without overt peaks of ability, with vs. without overt speech, or overall autism vs. Asperger syndrome, differs at a genetic level. Even language abilities cannot be used to distinguish autism from Asperger syndrome, as written language experts are as representative of autism as oral language experts are representative of Asperger's." — Laurent Mottron et al.


We are beginning to understand that high and low functioning does not have a bearing on intelligence. HFA or LFA also has little bearing on functioning too. Adam cannot talk well. This doesn't have any bearing on his abilities. Some people's autism is more of a challenge for them to "function" every day -- sensory issues, anxiety. But autistic people, as I have come to understand it thus far, are no different than anyone except that there are additional challenges, some more extraordinary than others. Those challenges vary from person to person and oftentimes there are co-morbidity issues. We do not belittle those challenges, but consider how we can accomodate them and provide access.

What is exceptionally dangerous is that parents are using this "low functioning" term to justify ABA services to "lower functioning" autistic children, while the rest of autistic children get left behind. In other words, we get more myth building in order to get the money and services without really addressing the real issues. While some people believe that getting something is better than getting nothing, I caution against this thinking as what arises is misunderstandings about what autism is, incomplete and often inhumane ways of "treating" autism, a very poor quality of service, and discrimination and dehumanization of autistic people

Adam can function in a "regular classroom" (his classroom is genteel) with support (and I uphold that almost every child can if the attitude of inclusion exists -- it does not mean throwing a disabled kid into an inhospitable environment. It means that the environment can and must be modified). So, if only a person now with a LFA dx gets attention, does this mean that Adam does not qualify for any one-to-one education, or legislation that entitles him to a family-appointed shadow in an inclusive classroom (I believe that the family has a right to appoint someone they trust instead of being assigned an Educational Assistant who works on behalf of the school board. I say this because Adam's shadows are my eyes and ears. As he cannot tell me if he's being maltreated or bullied, it is important to me to hear from someone I trust).

Does this stratification of competence mean that teachers get to sit on their laurels and blame Adam and other children for not being like the other kids because they don't have to DO anything? I fear that prescriptions for medications are going up in primary school students because the onus is always on the child to act accordingly and to fit into the school's model or structure, without ever really delving deeper into the child him or herself (how can they, their classrooms are WAY too big!) So long as you do your work, show up on time, follow the rules, you will be okay. School, the more I think of it, has little to do with the acquisition and love of knowledge, it is more about discipline and preparation for employment -- yet another structure we must learn to work within. Of course, there are always the teachers we remember who surpass the system to actually instill this love of learning, or who made us feel good about ourselves again. Dawn Prince Hughes describes school as the beginning of when all the walls went up. Everyone in her home, she recounts, was pretty much the same. In the telling of her story at a conference in Toronto recently, she tells us of how her quirks were accepted and supported. When she got to school, everything changed. More walls went up, she said. Eventually, she dropped out when she was sixteen. She became homeless. And of course, for those who know her story, she bonded with the Silverbacks and became a professor of primate anthropology. So, how much do we also have to reconsider the school system as an effective teaching mechanism? How many kids fall through the cracks? When I saw Amanda Baggs in Boston, someone asked her about school. She recounted all the schools she attended -- a long list -- and finally said, "but I didn't learn anything." I know my parents had to get me out of the public system or I would have been one of them.

So the Toronto District School Board, despite the issues I have raised which are overwhelmingly problematic, must include autistic people on the autism reference committee. It currently does not. We need autistic adults testifying about autism regarding the Senate Committee Report. We need autistic adults to state the kinds of help that would actually benefit them. It benefits us to understand their child hood experiences so we can set up the environments properly. Does it take our effort? Of course it does.

And why should we do it? Because we have kids with all kinds of learning and sensory issues who do not have autism too. I am troubled at seeing kids who need extra help, not get any because they do not have the diagnosis du jour.