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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Tuesday, October 24, 2006

 

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...

3 Comments:

Anonymous kyra said...

sending a shout out to you, estee, for the conference, for your speaking out, for your passion and committment, for your wide embrace. yes to all of it.

xx

8:23 AM  
Anonymous Pearl said...

Great site and resources.

Can you set up a flickr account and post a photo of few or the exhibition for those who can't get to Toronto?

10:53 AM  
Anonymous Sharon said...

This is a great post, you express so well what I have come to know in the past few years. I particularly like the line,
'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.'

That is exactly where the real campaigning is needed. Imagine if all that energy currently tied up in seeking blame and cures, was redirected in this more useful way. Imagine what could be achieved to make lives of autistic people, and consequently the lives of our children (for those of us with autistic children) better.

4:29 AM  

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