My Avenger

Tonight is Halloween. When Adam was two, his grandmother made him a little bunny costume and we went out trick-o-treating. Those were the days when Adam was learning “open door,” and during the crisp Halloween eve, he thought that every door that opened obliged him to walk through.

“No, Adam, you take the candy, see?”

He would reply with a whine. He just didn’t understand why he couldn’t visit every house that opened their doors to him. Candy was also something he hadn’t yet discovered.

The second year, I decided not to make a big deal out of Halloween. He would wear the bottom part of his bunny suit from the previous year, and answer the door to hand out candy. This was a hit. Adam was beginning to learn how to give and take, and he took delight in the children coming to our door in their costumes, and placing his tiny hands full of candy into their pillow cases. Later, it was a pleasant enough evening to walk over to our friends place to experience the “receiving” of candy, but at age three, he still wasn’t that keen.

This year, at age four, I am building on what I’ve learned. Adam is not yet that excited about Halloween. Instead of making him Spider Man or some character we both don’t really know, I sat down yesterday and stitched letters and numbers to old clothes. He will be ALPHABET BOY. My hyperlexic little guy was delighted. He watched me stitch the letters to his clothes with great focus.

“This is the needle and this is the thread.”

“Thread,” he’d repeat, watching me holding it tautly in the air.

“This is your costume.”

“Costume.”

“You wear a costume on Halloween.”

“Halloween.”

“You get candy on Halloween.”

“Candy,” he perked. Since last year, he has learned all to well the pleasures of candy.

I bought some pumpkins and we drew faces on them. We wrote a little story of how he will get into his alphabet costume and give out candy to the children at our door.

It was really nice to do this for Adam. It was wonderful for me to see him watching me sew the letters on his clothes and be a little interested in Halloween – or at least his mother’s sewing.

As I sit in the rocking chair I once nursed him in, stitching letters and numbers, feeling matronly once again, I consider with a great warmth inside that this is as good as it gets. -- this bond, this love, this peace. Adam may not be the man who leaps tall buildings, but he is my super hero, my avenger, my…Alphabet Boy.

Amanda Speaks

Reply to Autism Speaks and GRASP Articles of Understanding

Sadness and Joy

Last night, The Autism Acceptance Project drew closer to its end with a concert by Michael Moon. People were “sad” they said, because the month-long events are drawing to a close.

There is some sadness in me too. One thing I came to learn: when there is a safe environment for autistic people to come out, they do. I met more autistic people here in Toronto than I knew before. I felt last night that we had a mini Autreat going on and at the end of Michael’s concert he had us all singing Alleluia. I’m not a religions person, nor was this sung in a religious context, but surely this is what it was all about: Thank God we are all here, together, and we believe in each other. Humanity oozed in the room. Difference was transcended. We were all equal with the music. As the battles are fought outside, much needed peace swathed us inside.

I have two potential new autistic board members – one who is non verbal and uses a keyboard. It’s all about accommodation and how people can participate and not about how they cannot.

As the year continues, we will continue our talks with government; we will get autistic people into the schools as we plan our series of talks on the inside – familiarizing students and teachers with autism from the source.

As well, I will be talking at a few conferences across Canada next year.

We have a growing membership and our website will soon change to keep people up-to-date on the news and our efforts to increase opportunities and better education and services for all autistic people and their families.

Next fall, we are focusing a lot on education and science in autism. We have been asked to produce a magazine as well…TAAProject is hardly over even though the event is drawing to a close.

Thanks to all who participated in the event this year – coming a little closer to promoting a healthy dialogue about autism, even among the fury, perhaps coming closer to viewing autistic people, well, just human. Thanks to all the parents who brought their older autistic kids out (21 and above) who really want vocational opportunities for them. While TAAProject can’t do everything all at once, we understand the need to integrate everyone.

I was thinking about the Combat Autism Bill today, the name which is very unsettling for me, as a mother. I squirm at the thought of my son asking me about why he has to be combatted when there are real issues to contend with, like bullying in the school yard, isolation from being different. Real issues that we COULD transcend if we promoted tolerance and educated others about how to accept autism. I was thinking how we need to form a group of scientists without stigma, how we must reword our scientific questions: Research FOR Autism and the like. Lord knows we don’t want to combat our kids who are intrinsically autistic. We want to help them, enable them.

I wanted a perfect ending... Now, I've learned, the hard way,
that some poems don't rhyme, and some stories don't have a clear beginning,
middle, and end. Life is about not knowing, having to change,
taking the moment, and making the best of it, without knowing
what's going to happen next. Delicious ambiguity.
--Gilda Radner

What We Gain

Valuable Autism


Thanks Dinah and Ralph and all those who have contributed to research in autistic ability.

Building Bridges

If you believe the impossible, the incredible can come true.




As the Joy of Autism: Redefining Ability and Quality of Life draws to a close on November 5th, it is far from over.

The experience, as a parent, has been incredible, if not speckled with very few vitriolic comments from some parents. Most comments are filled with similar determination of parents seeking acceptance for their children.

Nonetheless, The Joy of Autism concept rose to the surface some of the angry divides that still impede the progress of all our children – through the belief that autistic people do not know themselves, or have no right to discuss autism if they are verbal, or have written communication abilities. It is a divide that continues to puzzle me as I believe that by working together with autistic people, we could do so much more for our children. Instead, by putting autistic voices first, some parents even go so far as putting their children so far down, “my child can’t do anything.” Having met many autistic adults over the course of the last two years, I haven’t met any disabled individual, autistic or not, severe or not, who can’t do anything. People can always do something and it is this something that continues to drive this discussion about just what a quality of life is – for people with disabilities and their families.In this blog post, I've searched for some messages that we can learn from other disabled communities:

Disability awareness


In an Articles of Understanding, between GRASP and Autism Speaks, Alison Singer, Senior Vice President of Autism Speaks states that perhaps Aspergers Syndrome should not be classified as ASD. She states, “…the differeing abilities of persons with Asperger Syndrome are nothing like my daughter’s autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum.”

This is the most misunderstood aspect of autism and perhaps the spectrum idea has to be further clarified and less generalized. Every parent who will contest my use of JOY with autism will use that argument saying that my son is high-functioning and theirs is “much more severe." The whole concept of high functioning and low functioning has muddied the autism waters. As my son grows, I know he is intelligent. However, at nearly five years of age and with many approaches, he still does not speak. He is quasi verbal. He still flaps his hands when he’s excited (a beautiful sight as it is an expression of extreme happiness for him). He still has motor difficulties. This from a child who was diagnosed “early” – at eighteen months of age (a note to all those on the "early intervention" bandwagon). Yet, he still learns and he will continue to learn throughout his lifetime.

In order to clarify understanding, autism, as Jim Sinclair adeptly put it at the Joy of Autism lecture series, is a dissonance of skills. While one person may be verbal, they may still possess autistic behaviours. Another, who may be non verbal, may have less autistic behaviours. Or consider the person who has learned to "behave" like others, but is still autistic. It is so difficult to categorize autism into shelves of intelligence with high and low functioning distinctions. Amanda Baggs is a perfect example of a woman whose intelligence is so laser-focussed, I have to admit she makes me think twice about my own preconceptions and beliefs almost daily. She needs daily assistance and is completely non verbal, using a keyboard to type. For more information on Amanda, go to Getting The Truth Out. In the same city lives Larry Bissonnette, who is in the exhibition part of Joy of Autism: Redefining Ability and Quality of Life. People who don’t bother to come to visit the show, have assumed he is “high-functioning.” But that means nothing. Larry can’t talk, and he uses a device to speak, through typing. He still draws lines in the air with his fingers and repeats words. He is aware of his repetitive speech and the way he looks to others, despite the fact that some may think he is incapable of deep thought. Yet, he is. He is a philosopher as well as an artist. And there are more. Consider those f who were taught to use a typing device, like Andrew Bloomfield here in Ontario who submitted a poem for Autspoken -- despite his “silence,” he shows that autistics do "speak." What they say has a lot to do with how we view our children, how we view autism, and how we value human life.

Segregation of high and low functioning autistic people is problematic. We should not allow this categorization to decide which human life has greater value, simply because one person may be more obviously in need of assistance. The argument to cure low-functioning autistics because they cannot do as much as a high-functioning autistics is an obvious categorization of human worth. Who gets to decide? Perhaps one’s “severe” is another’s “moderate”? For the parent who says their child “can’t do anything,” they need some exposure to many more autistic adults – of all areas of skill "dissonance." When we marry people with people, sometimes the fear just slips away. This is why it makes no sense to exclude every autistic person in discussions about autism.

Here is the catastrophe of the zero-sum game that a cure implies: either seek to cure your child or do nothing. Autism isn't a zero-sum game. We also know that parents who accept their autistic children don't sit idle and do nothing for their children. We still educate, use various therapies that do not seek to normalize the autistic person but enable them. We still sometimes require medications for anxiety, epilepsy, depression, for instance. Yet, we must be careful with medications too – anti psychotic medications are again being prescribed for autism, reminiscent of what happened to many autistics when they were once institutionalized. Autistics will tell you up front what those medications did to them, and we need to hear it again. If people just allowed others to be autistic, recognize strengths and abilities in all people, no matter how severely disabled, we could enable every individual to contribute to society to the best of our ability.

We need to set up facilitated places of business to employ disabled people -- non disabled and disabled people working together. We need more employment outreach services that can place those in companies who can be placed. We need creative opportunities for those who need more accomodations. No one should be left behind. Every community should include each member of our society. Instead of throwing money at a cure, the corporate community could contribute to the real values of community, and could enable and empower people. Let's say you still hope for a cure? What if it takes another fifty years or more? That's an entire lifetime for our children. Switching our hyper focus from cures to enablement -- education, vocational training, social skills training, inclusion, and more -- could actually create the real hope parents are after.

Michael John Carley, Executive Director of GRASP also wrote an Articles of Understanding.:

“If the autism spectrum runs from A to Z; and if Albert Einstein is an A, and that non verbal individual a Z (using ability to succeed in the world as our spectrum), then where is the Autism/Asperger cutoff? Is the line in the sand drawn at M or at N?

Although GRASP does not have non verbal folks participating in our support groups, the problem for is is that, in addition to the M’s and the N’s, we see plenty of G’s and T’s along the functionality spectrum. And we see no dividing mark. We see a gradient. We see a gradual progression of abiltities and challenges that flow into each other quite naturally. Also, if there was a dividing line between M and N, what if N was able to improve enough to cross over to M? Again the diagnosis can’t change, but the affected individuals almost always do, and often quite dramatically.”

We can't sensationalize autism and present it like cancer. It isn’t a terminal condition and it is not completely debilitating. The door doesn’t shut at age six. Autistic people continue to learn throughout their lifetime. What you see at age five, twelve, eighteen, is not the same autistic person you will see at thirty, and fifty. While some autistic people will require more daily assistance than others, it is their right to obtain it while also having the right to focus on their areas of interest – to improve their quality of life. If an autistic person isn’t toilet trained – move on, says Camille Clark in an autism podcast this past summer. Perhaps it will happen or never happen, but the point is that there are always other skills that an autistic person has that can be nurtured so that they feel competent and valuable to society and to themselves. How can we move beyond the divides and accomodate the disability to utlize the ability for the benefit of us all?

Autistic people are not vegetables. Despite the way they may manifest a behaviour, or not, they are aware of what goes on around them. It frightens me when parents believe that there is “nothing” there. It frightens me when I hear parents caging their children in their bedrooms at night “to keep them safe.” Treat an autistic person like an animal, you will get an animal in return. It is the parent’s responsibility to keep them safe, but to also protect the dignity of their child. If an autistic child may wander, get an alarm system, put hidden inside locks on the doors, but don’t cage him in.

If a parent is depressed or overwrought, get help. There should be more supports set up for understanding autism as well as respite for parents who still need to take care of themselves and feel safe to express their feelings with these challenges. Go to a support group with autistic people in it. Autistic people are very understanding if you are open.

But don’t divide autistic people, and don’t divide us as parents. We have so much to share and learn from each other, from autistic people who have taught me more about autism and how to parent my son than any scientist or clinician. It is called humanity. Look it in the eye. Don’t boycott it so that the autistic person becomes further dehumanized by society. Don’t as a parent, continue to use pejorative language regarding your child who does understand how you feel and what you say about them. Don’t wish me or anyone else “an autistic child,” as a curse. (Someone did this to me once, which I had to laugh, since they did not know I had an autistic child. It was also very perverse to talk about autistic people in this regard).

If you are fighting to cure your child, know that it may be futile. We have been trying to “cure” autism for forty-odd years. Well-regarded scientists everywhere are stating that they don’t think autism “will ever be cured.” Yet it continues to be central to this debate when we must begin focussing on the real issues at hand: how do we get our kids educated, included, accepted, and integrated into society as best we can? How do we do this by respecting them as autistic people, without trying to change their very being?

Many scientists are making their livelihood on trying to bring a cure, to no avail. People will accuse me of not wanting to cure Adam. But as I said in an earlier post, to answer that question quickly is scarrier than the question itself. What about answering the questions that arise from the very possibility like who gets to decide? What do we have to lose? Who would we lose if there were no more autism in the world? Can we separate finding a means for a non verbal person to become verbal versus curing the autism? Can we keep the autism abilities while curing the disabilities? These are questions that can leave our heads spinning, but spin they must.

Some autism charities use the fear tactic to get you to give more money to find a cure for autism. Some families use “life-saving cure,” language to get the government to offer more money for specific services. It is wrong to use incorrect facts and fear tactics to market for money to cure autism without regard for how the autistic person feels about it, and at the prospect that many well-respected scientists will admit that a cure is still improbable.

Do autistics need help? Yes, they do, but not this way. Not at the expense of their personhood and dignity. Not with pity parties dressed in diamonds. They need real help, real acceptance. They need us to learn and roll up our sleeves.

I had to chuckle the other day. A couple of people got angry at the Joy of Autism title, but it is not a foreign concept even for life-threatening diseases. The Toronto Sun last weekend had an article called “The Gift of Cancer.” Ellen Schwartz, whose young boy has Canavan’s disease and is not expected to live very long, wrote about the joy of having a boy with Canavan’s disease. Joy and Gift is often associated with adversity. Often, in the face of dire circumstances and the unexpected, we have found more purpose and joy in life by appreciating it all the more. Disabled communities “celebrate disability.” So what this tells us that we are at a very young stage in understanding autism, that the debates that occur today, were the same that occurred with the deaf community, with the homosexual community (the latter were thought to be severely mentally ill). I will continue to celebrate and cherish autism because of all the autistic people that I know. I will celebrate autistic people as I learn to accept what is and what can be achieved faced with such adversity. By looking to other disabled communities, I feel we can inform ourselves about our preconceptions about what disability is and how we tend to regard it. Ask yourself, what can we learn from people with other disabilties?

Wonder


By believing in autistic people, we can obtain the services and education that is their civil right. By complaining about autistic people as being “a burden on society,” and more, we cease to acquire services and accommodations and dangerously head towards a sophisticated eugenics model that begins to assume that no autistic should exist because they are vegetables and “are unhappy,” and are an economic burden.

As a parent of a moderately autistic child, I take issue with anyone who will market autism in a negative way in order to obtain money, or parents and organizations that exclude autistics from a dialogue where everyone has to benefit from each other. I take issue with scientific bias. I take issue with every single press release being reported in the media to the point that parents are on this frenzied ride to “cure” their child’s autism:

Let’s take a look at the last month alone:

Last month older dads caused autism
Then, about a week later, high cholesterol did.
Then, about two weeks later, excessive TV watching caused autism

Get the picture? I could go on. Scientists need to take more responsibility for what they are reporting, as reports cause frenzy. The public needs to understand that some scientists also possess prejudice against autistics. If they don’t believe that autistic people are people first, then what direction do you think the science is headed? Parents have to really stay abreast of who is behind the science, and get off the recovery train that leads to nowhere, that only lessens a family’s quality of life by the sheer exhaustion of this never-ending "recovery" journey.

It’s a real struggle to get an autistic child an education. It is a real struggle to go into public and have to explain autism to just about everyone who wants to know. It’s a real pain when someone comes up to me and says “Your child is autistic? Oh, I’m sorry.” It takes a lot of guts to stand up and say “What for?” Most of us are still very naïve about disability with its assumptions that disabled people are “unfortunate,” and less human and entitled than the non disabled person.

I am proud of my autistic son. I am proud of his joy, his efforts to learn amidst those who have already tried to pathologize him and his tenacity. As his mother, I am quick to sift people out. It has become easy to see who really believes in Adam, who just loves him for who he is, and who can see his potential. If this is autism, yes it is a challenge, but not the autism as much as the stigma of autism. I love being Adam’s mother and what he and autism have taught me. Adam is a joy, and he humbles me with a his pure child-like wisdom that the only thing that's really important in life is happiness. Perhaps it is innocence still unscathed. I look ahead to his teens and beyond. I see the bumpy road ahead. It is there but I won’t complain. We'll keep moving forward. I will always be proud of my autistic son, Adam.

From Ellen's book -- an excerpt by Emily Perl Kingsley:

The stewardness comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy! All my life I've dreamed of going to Italy."

But there's been a change to the flight plan. They've landed in Holland and there you must stay. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

But...if you spend your life mourning for the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.


Imagine...

Autism isn't the Opposite of Normal

This one is for Carol Motts of CFRB Radio who suggested that all parents of autistic children should make them as "normal" as possible, as if it is a parental duty, and for anyone who carelessly suggests that "Autism is a Living Nightmare." I can't imagine that any autistic person would have felt safe to participate in that phone-in discussion and as I tried to make my point on CFRB the other day about sharing, respect and value, the MOTTS hung up the phone on me. I was raising those points because The Motts were discussiong "good behaviour" of students in a precedeing program. Carol began to pontificate that the show of respect was marked by a student saying "please," "thank you," and delivering "eye-contact." I thought these were some good points to go on in discussing how to respect autism in the absence of those capabilities. (Note: I was also told that this wasn't going to be a phone-in and I was the only person being interviewed about The Joy of Autism: Redefining Abiltiy and Quality of Life event).


My next post will be about the responsibility of the media to recognize the polemic discussion of autism without creating more and more divides. It will be about the need to create safe envrionments and healthy dialogue where autistic people can participate with parents, as well as how parents can express the challenges of severe autism without making an autism spectacle that the media feeds upon, and at the peril of all our children.

When The Moon Come Up


Euthanasia Blues

CJN article

Art, lecture project part of Autism Awareness Month. Click HERE to view.

Autistic People "Speak"

The following is a quote from Mike Stanton:
Autistic People are human beings with human rights that are not predicated upon whether or not they or their parents are seeking to normalize their condition and trying to eradicate all traces of their autism. These rights include the provision of accommodations that are necessary to maximize their ability to benefit from participation in society.

Listen to Autistic People "speak" HERE Jim Sinclair, one of the autistics interviewed here, will speak at the Al Green Theatre in Toronto at the Bloor Jewish Community Centre at Bloor and Spadina at 7 p.m.

There should be no question that autistic people, whether keyboarding or speaking, have a right to participate in all discussions concerning them at every level. They can help us understand the issues at stake, how to understand autism, how to accomodate and educate our children. We have nothing but to benefit in every way from them -- for our children, our families and our society.

Listen.

Redefining Disability

I like the way this article Redefines Disability that we can all easily supplant to autism. While a disability should be a passport to services, it should not dictate the way you are treated and regarded by your friends and family.

Read on: Redefining Disability: Revolutionary Common Sense by Kathie Snow.

Accepting Autism

I copied this from a scanned copy of the paper today. The paragraphs are a little off in reformatting here.

COUNTERPOINT -- Today in The National Post
Accepting autism
Estee and HENRY WOLFOND

The article in last Saturday's Post headlined Redefining Autism grossly mischaracterized the mission of The Autism Acceptance Project and misrepresented
the role that we take in raising our autistic son. The premise that acceptance
of our son's autistic condition equates to acquiescence or denial is totally
misleading. Autism is a challenge. Our son works many hours with us,with speech language therapists, with occupational herapists and with his school teachers to learn and thrive in the world. We do everything we can to ensure him the brightest future possible- a future that will include autism.

Autism is a disability that needs to be accepted and accommodated in society
in the same way that ramps are provided for the wheelchair-bound and braille
is put on signs for the blind. We view it as a human rights issue. The focus of
The Autism Acceptance Project is promoting the objectives of gaining deeper
scientific understanding of autism and exploring methodologies to enhance
autistic potential through reciprocal education of both the autistic and nonautistic
populations. It is imperative that autistic individuals participate in
this dialogue. We advocate that more funding be applied to research the inherent
strengths and weaknesses of autistic people. Services and government financial support should be provided to accommodate autistic people. All policies must respect the dignity and intelligence of the autistic individual and their special needs.

While the title of The Autism Acceptance Project's exhibit and conference,
"The Joy of Autism: may be provocative,it is organizations that attack autism as a
disease to be beaten, the ones that focus on the "misery of autism" (Autism
Speaks, Defeat Autism Now, etc.), that undermine the opportunities for autistic
children to lead happy, productive lives. The message that war must be waged on
autism leads to prejudice against autistics. Despite their peculiar behaviour,
autistic people have intelligence, sensitivity and many other empirically documented
strengths. So long as we persist with the view that normalizing our children
is the ultimate goal, autistic people will continuously face stigma and discrimination. Misery proponents lead parents to believe that autism is attacking our children and needs to be eradicated. Parents are channeled in to a therapy that aimsto normalize behaviour - to make their children "inistinguishable from their
neurotypical peers." There is no accommodation for a parent who accepts that
his child may at times behave autistically, but who still wants to focus on developing inherent intellectual strengths.

If there is anything that could ravage our son Adam of which we are most fearful, it is this attitude that he is somehow diseased, insufficient or incomplete. As we evolve, let us all find a common language that supports parents and families so that our autistic children can be the best autistic children they can be. We work to achieve every possibility for our son. Adam works very hard to reciprocate, to become part of this world that judges him so harshly. To witness such an affectionate, charming child be viewed by society as less than human - in fact, "not human at all" - that is the tragedy.

National Post
estee@taaproject.com
I Estee and Henry Wolfond are
founders of The Autism Acceptance
Project.

A Human Rights Crisis

After The National Post article, I have mixed emotions.

Adam brings me great joy. Adam is autistic and that it's okay TO BE AUTISTIC. Autism is entwined with many abilities as well as challenges. I am resolute that we MUST as a society begin to pay equal respect to autistic people who do not see their lives as a tragedy, or that THEY are not like US, as such, inflicted with a disease. Indeed, this idea is imposed upon autistic people by non-autistic people, and continues to marginalize and stigmatize the many autistic children AND adults living in Canada today. I am resolute that I have a responsibility to defend my son's right to accurate science about autism and that he not be assumed or deemed a "burden on society." If we said that about our blind and deaf communities, that would be discriminatory. Yet, it is sanctioned in autism. I am resolute that we must continue our arduous work at the level of human rights and science, to understand autism in the face of such pejorative use of language and interpretation of autism and its respective "behaviours," viewed from an abstract notion of what "normal" may or may not be.

I read the first lines of the article: "Four year old Adam Wolfond is comforted by shadows. Jumping on his backyard trampoline, with his arms at his side and his face turned to the sun, he wiggles his hands furiously so that, in the lower periphery of his vision, he sees the sunlight flicker through his tiny fingers...his shadow play is properly [bold mine] called self-stimulatory behaviour [bold mine], like his habit of spinning around and around and strangely never losing his balance."

I was immediately struck by this interpretation of autistic behaviour. Again, looking at him from a non-autistic perspective, and without knowledge of what autism is, or asking the question of what that behaviour means for an autistic person (the article did not interview many autistic adults in the room at Lonsdale Gallery last Thursday night), there was a language use that lacks a fundamental rigorous and respectful investigation of the autistic perspective. This lack spotlights a false-belief that autistics don't understand themselves or their own behaviour, or are even aware of it, or that they understand how they are viewed by non-autistics. Indeed, if you speak to any autistic invidividual (even the "low-functioning" one who may use a computer to communicate), one begins to garner an appreciation for the line formation of ice on the ground that may twinkle in the sunlight. The behaviour of the autistic person entranced by such a vision, may to us non-autistics who may not appreciate the intricacies of such grand designs, be interpreted as "weird" or "abnormal." Indeed, many an assessor, who viewed my son at the time of diagnosis, often wears these prejudiced glasses -- the outsider "interpreting" behaviour that s/he does not understand -- and hardly does the work TO UNDERSTAND. As a result, you will get such a skewed, unempathetic, unknoweledgable, nay biased, interpretation of what autism is for the non-autistic person, thus, a comparison between what is and isn't "normal."

And then of course, Dr. Wendy Robert's, confusing "conclusion" that while she feels autism is "on the continuum of normal," she "would [still] be injecting." And of course the notorious comment used by most genetic researchers to justify prenatal testing for autism: "many parents have been beaten black and blue by their autistic children," as if the diseased, sick, [their implication, not mine] child is at fault for this and ALL AUTISM MUST BE ERADICATED -- strikingly reminiscent of a FINAL SOLUTION. It sounds like other genetics researchers, whose funding depends on such flagrant statements, and like Dr. Jospeh Buxbaum, whose parental supporters "will never be an Albert Einstein." I've stated many times in past posts, that the most frightening thing for me is the rash and quick conclusion that a cure for autism is required, without understanding autism in the least or for any consideration of the ethics involved with regards to implication and consequence. No consideration is paid to the damage this may be doing to autistic people, living and thriving in our communities today. Michelle Dawson said correctly in her CBC Quriks and Quarks interview: "even if it helps one person, it may do an equal or greater amount of harm." Does ANYONE consider the harm such talk inflicts upon the autistic person??

It's time to say ENOUGH IS ENOUGH.

While my Adam may never be an Albert Einstein, I refuse to impose an assumption that he is incapable of being one, or at least, the best ADAM he can be. To believe that our children are incapable to fulfill their potential as autistic people, is to believe that Stephen Hawking is not possible. I refuse to state that just because he is autistic, he is an incapable vegetable. Simply, it is just not the case. It strikes me as sensationalist of these scientists to continuously use such depreciative examples of situations or children -- whose circumstances may be so complex -- to just write it all off as the predicament of ALL AUTISM, for the purposes of aggrandizing their research. As we still do not understand what autism is, it strikes me as horrific for a researcher to proclaim in the national press, that she "would be injecting" a cure for autism. Just like that. It strikes me as terrifying that such researchers exist, who do not at all pay attention to what harm they are doing to the very people -- the autistic adults and children -- who hear from such espoused autism "experts" that they feel autism is something terrible that needs to be cured. Just like that. It angers me to think of the lack of consideration they pay to the likes of my son Adam, who will be utterly offended and effected by such "expert" views of him. Indeed the laziness of society to accept such "expert" advice on autism also frightens me. If we believe all of those epidemic statistics that are currently espoused by our so-called "respected" autism organizations, we will all be autistic in about twenty years time. I can assure you, I will never take my son to the likes of such "experts," who espouse so-called "facts" about autism -- either disproved or out-dated. We know we do not have an epidemic on our hands, as refuted by the science, and it's time we stop saying so for the purposes of raising money.

I will invest in understanding autism.

I sat back the past several days, and considered the effects of all this on Adam. I would now like to quote a response I typically get from parents, which was written in the letters to the editor in the National Post today: "With all due respect for Ms. Klar-Wolfond, her son is only four years old. It is presumptuous for her to think that she can speak on behalf of of parents of children with autism before she has watched her son endure the ravages of puberty and the challenges as he becomes more self aware."

Perhaps it was this comment that struck me as I take a view to Adam's future.

It seems odd that such parents believe, in their whole hearts, that autism is attacking our children, like cancer, and needs to be eradicated. And yet, the science proves that there is no epidemic; that autism has existed for generations; that there has been no increase in autism; and by all accounts from science and autistic people, autism IS a different species of human, as noted in the recent words of Dr. Laurent Mottron, and appreciated by Leo Kanner as far back as 1943. If there is anything that could ravage my son Adam, of which I am most fearful, it is this attitude that he is somehow diseased, insufficient, not normal or incomplete. I, like many parents, work to achieve every possibility for my son. Adam, works very hard to reciprocate, to become part of this world that judges him so harshly. That, above all else, is heartbreaking. To witness such an affectionate, charming child, otherwise viewed by society has less than human, in fact, "not human at all..." that is the tragedy.

If there is anything I feel I need to do more than ever,is protect Adam and to endow him with the confidence to stand up against all of these pejorative comments about him as an autistic person. I am baffled at how parents find it justifiable to comment on every negative, or challenging trait of their child, without at all doing the work and research into understanding what autism is. One day, when their child becomes more "aware" of themselves, they will understand their parent's disappointing view of them. I know Adam, at four, is already aware that he is different and this speaks to me as a crisis to contend with -- not a crisis of autism, but a crisis of inaccurate stereotyping of autistic people. Not a crisis of an autism epidemic, but a crisis of prejudice and lack of understanding. Indeed, an epidemic of laziness and sanctioned discrimination. Autistic children and adults are suffering, but as they say, not from their autism, but from society and parents who do not accept them and spotlight EVERY challenge, EVERY negative as the sole purpose to get rid of autism. I am always struck by the dignity and grace with which autistic people continuously handle such attitudes and perjorative language, and I choose to stand with them -- because my son Adam is one of "them."

Our society is full of inaccurate science to which parents pay no attention. Society shoves the evidence aside because in autism, it doesn't matter. Instead, inaccurate information is espousesd by our leading autism organizations who say that autism is a crisis, an epidemic and our children are a "tragedy" and will be a "burden on society." They choose to ignore the science that states overwhelmingly that we neither have an autism epidemic on our hands or that "ABA IS THE ONLY LIFE-SAVING WAY TO CURE AUTISM." We now know from every control and random study, that ABA does not help the child to become independent adults BECAUSE of it. In fact, ABA may have done a great deal of damage. We know that so-called early intervention candidates as young as two had to be removed from these so-called "effective" therapies. Ivar Lovaas himself said "ABA is not a cure for autism ...it is only an educational method." So let's not then overstate things. If you want to extract methodologies, recognize them as such. Do not hyperbolize a therapy as a life-saving cure. Further, understand the formerly aversive nature of ABA. I see changes in the therapists today, recognizing and extracting from many different methodologies that help autistic children. But do not state that it is "evidence-based." We are, still at this point since we do not fully understand autism, extrapolating.

Here is a parent who actually reveals the so-called "effectiveness" of ABA:

"Because of that, he was able to get started early in his life on an effective behavioural treatment therapy, called Applied Behavioural Analysis. He has been benefiting greatly from it ever since....

I see no joy in watching my child repeatedly bash his fist to his face or in cleaning up feces-smeared carpets and walls at 3 a.m. My wife and I will continue to do everything in our power to stop autism from ravaging our lives and, more importantly, the life of our much-loved son, Michael."

With all due respect to their child, I do not equate the benefits of ABA in this statement. We know that autism is forever. It is not life-threatening like cancer. ABA will not eradicate autism. Various methods to teach autistic children, if taught with respect and understand of autism itself, can help the autistic person be the "best" autistic person they can be.

The fact is, ABA is not a proven therapy for autism, despite what parents say and it's time people stop ravaging our children for the sake of trying to prove it. Further, the science just does not support it. Yet, we continue to espouse it as absolute -- in government fact sheets, among autism organizations. As Dawson says, "Don't autistic children deserve better than assumption and speculation?" The least we can do is invest in understanding autism, and respect our children.

All children need to be understood and accepted by their parents, not constantly reminded what a disappointment they are, and how much grief and financial burden they have caused their parents. All children deserve to be respected and provided every opportunity in life, and be regarded as whole people instead of broken ones.

While I do not want to alienate parents (even though some continue to alienate the autistic in these discussion about them), I do mean to suggest that it is obvious some have spent more time mourning over the "ravages" of autism rather than meeting the hundreds of autistic adults living in the Province of Ontario, and learning from them. There is more time spent grieving over the child who is alive and who needs us as parents to believe in them. I believe that if we can build that bridge by providing more forums for autistic people to speak, to participate on our scientific research teams, to teach in our schools, to sit on the boards of autism organizations, we will better understand the enormous challenges as well as the fundamental value of autistic people in our society. Parents also need to be supported in understanding the many aspects of autism. No one is denying that autism can be a challenge, that perhaps some autistic people who can't speak, may wish to, for instance. I am also baffled that parents do not find intrinsic joy in their children, no matter what the disability.

Autistic people have much to teach us. My son has taught me so much already, even, at four. He has guided me to many autistic people in North America who have taught me more about autism than any non-autisitc "expert." But I guess if you feel that autistic people don't even understand themselves, you might continue to alienate autistics from the very discussions concerning them. This does not happen in any other disabled community today. Yet, it's sanctioned in autism.

It bewilders me that parents do not share the same goal for their children whom they love. It strikes me as odd that they do not want them, really, to be the best people they can be, but instead, have committed to hopelessness, placing all of their time on ineffable cures. It seems to me, that our children need all of our strength and commitment AS PARENTS to BELIEVE in them. But you won't believe this if you constantly believe that your child has a disease like cancer. And we do KNOW from the science, that no external cause has been identified with autism to suggest that it is like cancer. Overwhelmingly, autistics say that despite their many challenges, they still would not cure their autism. This sounds familiar, as the blind describe their blindness as a way of being. Something that becomes part of them. Do we define blind people as diseased? No. We define them as handicapped in a world where the majority SEES. Yet, we know that the blind have many abilities and strengths without sight as a result of the brain's ability to adapt.

Instead, these are the questions I ask myself with every action I take as we grow with autism:

Doesn't Adam deserve to be understood?
Doesn't he deserve to be treated with respect?
Doesn't he deserve to be protected against pejorative comments that destroy personhood?
Doesn't he deserve to be regarded as a whole person instead of an impaired one?
Doesn't he deserve to be included in discussion about him as an autistic person?
Doesn't he deserve the right to a good education?
Doesn't he deserve the right to be accomodated with services that is proven by peer-reviewed science?
Doesn't he deserve the same quality of life that we all have?
Doesn't he deserve to be respected by me, as his parent; to treat him as a delightful and equally entitled individual?
Doesn't he deserve the right to be legally protected against discrimination on every level of science, education, employment, accomodation and services?

I think he does. It doesn't mean denying autism. It does not mean that I am in denial. It means that I accept autism. I accept the challenges, and indeed we all have our own, as families, as individuals. I respect the challenges that all parent's cite. They are real. They should be supported, but not at the exclusion of autistic people and inaccurate facts. Also, we must all acknowledge that opinions may differ. One person's tragedy is another person's challenge. We can meet life head-on, viewing the cup half-full, or choose to live with it half-empty.

Yet, I strongly disagree with regarding autistic people as incapable of understanding themselves, and at the exclusion of an autistic person's right to accurate science, and with the complete and utter disregard for how words effect them. We must consider autistic people as whole people, with the right to speak for themselves and participate in these discussions.

Acceptance also means I disagree with spotlighting the challenges of our children for the sole purpose of being right in the face of incorrect facts about autism that are glaring today. This is why I will not discuss many things about Adam -- and many people make a lot of assumptions about him and our family. It's a weak argument -- whose better or worse off, who is higher and lower functioning, whose child is most self-injurous, who has more money to "treat" autism. These arguments achieve nothing, reveal nothing. I've met many parents with little who do not complain as much, who face the same struggles, and who have come up with creative, accepting environments for their children. And you know what? It's still all autism.

The strategy of creating a disease model in autism is not even working. On the one hand, while we broaden our knowledge about autism, we are also increasing fear, and this is resulting in the exclusion of autistic children in many of our schools. We need more services and education -- not to remediate autism, but to teach the autistic person in a way that befits them. We need to respect and accomodate autistic people as much as we accomodate the blind with Braille.

Above all, we need as parents, professionals, society and autistic people, to find a common language, perhaps only forced upon us by the evidence, to support parents and accomodate the autistic members of our society. I believe we can do it.

With all my heart and soul, I believe in Adam, and his basic human entitlements. I believe that by the time he reaches puberty, he needs to know that he is loved and accepted by me, his mother. He has taught me all of these lessons. All thanks to his world, his wonder and his innocence.

Is It Artism or Autism?

Instead of using the speech he prepared for opening night below, Larry typed in his words on his computer, on the spot. Here is the prepared speech he was thinking of using, but didn't. It asks the perennial question: Is it Artism or Autism?

Larry Bissonnette asks the question, am I artist potentially because of mental and neurological traits of autism or possibly am I an artist because of obvious natural talent?

All it comes around to is awesome perspective that an artist can get on world's sights, sounds, and smells. Wearing an old shirt and grabbing a paintbrush is like letting go of closed in feelings and applying lavish amounts of attention on pure creative impulses.

Sawing wood for frames also lets relatively simple task of hands working with tools assume status of artistic worth because paintings are represented by their images and the lifegiving frames around them.

I waltz into Toronto enjoying lots of international travel so I hope it's the same crossing borders experience for all of you."

Larry Bissonnette's work is on display at The Lonsdale Gallery at 410 Spadina Road, Toronto.

Larry Bissonnette Speaks

Hi Estee,



Larry and I had some time between flights on our way home on Friday and we had a chance to look over the TAAP magazine and read your story about your visits to see Larry and Jonathan. We have been to many events together and I could tell he really enjoyed this one. He wrote some words to you:


“Kinship with people either classically autistic or mildly lit up by less obsessive peculiarities of autism is really wonderful. Looking at my artwork presented with such elegance let me proudly get goosebumps in my heart. Most liked doing speech on loud microphone. Maybe will FC speech and read it out loud in the future. Thank you again.”

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Let there be more autistic voices that rise, more forums in which they can be heard, no matter what the medium. You can view Larry's work at The Lonsdale Gallery at 410 Spadina Road, Wednesdays-Sundays 12-5 p.m. It is part of the Joy of Autism: Redefining Abiltiy and Quality of Life EVENT

CBC Quirks and Quarks

Listen to interview with Michelle Dawson and Laurent Mottron here: CBC RADIO ONE "Rethinking Autism."

Michelle Dawson, Dr. Mottron and Dr. Gernsbacher can be seen at the Al Green Theatre, Bloor Jewish Community Centre (at Bloor and Spadina) on Tuesday, October 10th, at 7 p.m. Tickets are also available at the door.

And The Last Word On Autism Goes To...

People without autism are more often than not, given last word on autism. The problem with the article, is that it doesn't interview one autistic person living in Canada today. I am glad that autism is finally being discussed -- that the concept of neurodiversity has been given some attention.

Today, you can read the front page story in The National Post here.

Here was my reponse today to the editor and the writer:

Dear Mr. Brean and Editor of The National Post:

While I thank you for doing the article on Redefining Autism, and understand the need to “balance” the argument by garnering many opinions from parents and professionals, I must point out that it remains imbalanced because it lacks one fundamental group: autistic people.

You did not interview any of the autistic people at the show at Lonsdale Gallery on Thursday night. Larry Bissonnette, considered “low functioning” has said by using his keyboard, “people who think your disability is an illness need to be cured of their ignorant attitudes.” You did not call the many autistic individuals living in Canada today, or our leading researchers in autistic cognitive ability – Laurent Mottron and Michelle Dawson (also an autistic person).

The Autism Acceptance Project’s purpose and The Joy of Autism: Redefining Ability and Quality of Life event is unabashed by this article because it once again shows that the media does not put the voices of autistic people front and centre of issues regarding them. Instead, we continue to get skewed views from non-autistic people and autism academics (also many autistics are part of this academia), about ideas of normalcy. This does nothing more than continue to stigmatize autistic people as aberrant in a way that degrades them and misunderstands them. Don’t you think it might be a good idea to ask an autistic adult what those behaviours mean for them? When you interpret the “boy jumping on his trampoline so that he can see the sunlight flicker through his hands,” one always has to consider that you may not understand what that boy sees – because you are not autistic. Your observations would have been much more fascinating had you contacted an autistic person who could have given you yet another perspective – the autistic perspective.

It was interesting that you did not talk to the many disabled members in the audience as well at Lonsdale Gallery on Thursday night. We had a remarkable attendance of people from many disabled communities – the idea of representing disability with the voices of the disabled is nothing new, and it was certainly not started by me. We had a few unexpected autistic guests as well. I’m sure they will be once again be effected by a de-humanizing, nay medicalized, portrayal of autism. As ususal, people without autism are always given the last word.



I guess I should have mentioned that Adam gets speech therapy, occupational therapy, one to one therapy every single day, and that acceptance does not mean ignoring these things.

All of you (and I hope many responses come from autistics themselves), can respond to the writer and the editor by emailing to these addresses:

jbrean@nationalpost.com
letters@nationalpost.com

Also, today, Saturday, Laurent Mottron and Michelle Dawson can be heard on CBC Radio One 99.1 at 12:00 NOON.

The Launch

The Launch of The Joy of Autism: Redefining Ability and Quality of Life last night was a dream.

Five autistic guests who spoke at the microphone, and a gallery full of people, willing to accept. Parents thankful and aware of our need to accept the joy our children bring us, despite the challenges. People untouched by autism approaching me who said “I didn’t understand autism, and now I understand a little more.”

And then, as I finished my speech which had no mention of the following words, Jonathan Lerman yelled: “SELF ESTEEM!”

Larry Bissonnette wrote on his computer: “Larry looks good on Estee’s film.”

Brian Henson said “we are not all the same,” and gave reference to how autistic people are stereotyped.

Martine Stonehouse talked about autistic ability despite the many challenges she has face throughout her life, and her wish to be appreciated for her ability.

Then Alan Lerman said, "The title Joy of Autism seemed provocative. I read some of the comments on Estee's blog where one parent said 'I'm tired of all the doom and gloom.' The Lerman family is in that corner."

We were well attended by educators, autistic people, scientists, parents and many people from other disabled communities.

I am grateful that my life has been touched by these incredible people. And all because of one child who has given me more than I could ever give back in return: my Adam.

It's No Joke

A snigger for the chattering classes
BY SOPHIE COLES

(This article was passed around by Kevin Leitch. It is from The Times, U.K.)

MY 11-YEAR-OLD son is funny and clever, kind and happy. He is also autistic. He doesn’t compulsively collect bus tickets, nor does he rock gently in the corner. But his condition will affect him for the rest of his life.

And the most scary and unpredictable time is the approaching teenage years when children learn about their condition and often tip into depression or even suicide. I think about the possibility of that every day, and what my husband and I can do to help him through it. And it comes down to self-esteem. Simon has the brains to have a fully independent place in the adult world — but only if he feels he is worth something.

Soon we will have to explain to him what he is, why he is different, why he needs support — and in a way that makes him believe in himself. Simon has no idea yet that he is different — and so far, his eccentricities appear to the children around him to be just that. Years have already gone into helping him to cope in the world, helping him to make friends and understand other people, managing his social relationships.

We are now at the critical next stage. It starts with saying that we are all different — certainly on the outside, and sometimes on the inside too. So far, so good. But the next phase is to explain the ways in which he is different. Finally, a name is put to it — autistic. The theory is, in a year’s time he will understand why he thinks and acts differently and, crucially, see it as something that, if not positive, at least isn’t negative.

In the past few months, it has become fashionable among smart metropolitans to use the term autistic as a catch-all to denigrate any but the most socially adept men. And it’s always accompanied by a snigger. It’s in the media, it’s at dinner parties, now it’s at a party conference. Somehow it’s acceptable and clever — though those same smart metropolitans would never refer to someone physically maladroit as spastic.

My son cannot help who he is, what he was born with. The most I can do is make him feel good about himself. But how can that ever be possible if, when the time has come, he’s already heard the term autism used by people who should know better as a cruel joke. It is fodder for the playground bully. And it will eat away at the self-esteem of any autistic child or teenager able enough to understand that it is an insult.

The author is writing under a pseudonym