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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

Monday, December 03, 2007

 

Live Strong



I was just in NYC this past weekend for the Michael J. Fox's Foundation Gala. Henry insisted I get this photo with Lance Armstrong. So, in keeping with the "Live Strong" theme, I'm going to express it in the name of autism.

Also, I didn't have a chance to post Roger Collier's article from the Ottawa Citizen until today -- Autism Reconsidered. I also post it here within this theme.

I really like the article, compared to how other journalists have mostly written about autism to-date, almost always over-simplifying a very complex matter. Most of all, I like the ambition and intention of non-autistic people who strive to understand the views of disabled and autistic individuals.

When I say in the article that Adam "regressed" because of the ABA that was conducted early in hour home before he was two, he did. He has progressed without the use of it, exclusively. What I mean is, the "breaking some tasks into small parts" bit of teaching is something we do often here in our home. Yet with many instructors, ABA or otherwise, he lost some of the skills that he came to acquire on his own. He learned mostly with play therapy, music, exposure to new things, videos, computers and more. I found many therapists did not understand his learning style. I found that they tried to squeeze him into a box in which he did not fit, and those who used the method, or who had low expectations, made him anxious. I found that some therapists did not respect our family values (one told me that nursing Adam still at two was wrong).

Often when you hire someone to assist you or members of your family, they see their role as having to fix things. I wonder how much of this is an encumbrance on them as clinicians? I also wonder how much of this expectation from families shape a clinicians approach to autism? I will admit, there were a few who came into our home -- at the time of our early expectations of eradicating autism -- who said that we had to "accept" Adam and "enjoy" him. In those days when the fight seemed the more honorable route, I got angry with people who didn't want to battle his autism with me because it felt like giving up. At the same time, people who say "accept" should not beleaguer us with their low expectations. Here's one more definition of acceptance: it means that Adam is just as entitled as anyone else -- no less valuable and no less human.

What if we didn't construct a system for autistics that focuses just on fixing them or extinguishing autism? What if we focussed on their innate ability to learn? The wholeness of the child (for lack of a better word but I use it since our kids are conversely often referred to as broken). I want parents, like me, to have choices. We don't want to be fixed. We want to learn, grow, live and be included. Acceptance has propelled us forward and Adam is included in a "regular" school, with an aide. Acceptance has not forced us into isolation.

We did not pull Adam out of all therapy, so if you hear from others that I advocate "doing nothing" for autistic individuals, they are misconstruing the message. In Adam's case, we had to modify the approach to his therapy, and those modifications are always occurring as he changes and grows. I am all for one-to-one assistance. Also, those who want to claim that I am against ABA are mis-characterizing me and the role of The Autism Acceptance Project. There are many people who traverse this path and who love their kids, and I know many families who have little else to acquire here in Canada, so they are working with their teams in the best way they can. Yet, I haven't met one fully satisfied parent. The real fact is, in Ontario, there is little choice in what families can acquire in the name of support, and the overriding view of autism is that it's a horrible thing, which of course, I don't believe. I believe that view is extremely damaging to our children. I know there are challenges - some of which are rooted in perception, others which are real, perhaps exacerbated by lack of understanding and support.

If ABA (which ABA instructors are beginning to say in their classrooms does not work for all autistic people, and who are already expanding their methods outside of the ABA box), works for a family then they should get that assistance (and perhaps the ABA community might feel some solace in knowing that their child's right to assistance need not depend on devastation rhetoric). I am ready to acknowledge that ABA has evolved and it is not pure ABA anymore anyway. What needs changing is an evolution of our understanding of autism from autistic people as well as research that helps us learn the best way to assist autistic people -- from family attitudes to medical approaches to educational methods. We may also need to accept that our community will be diverse within itself. As in the deaf community, there will be branches of belief systems and some of these viewpoints will be influenced by whether or not parents share the disability, or at least share in a sensitivity to "difference."

Back to services, if I need an AAC device and training for my son, then I should be able to get that for Adam without having to travel to the U.S. to find that expertise. If I want my son to be included in the school system, and I want to hire an aide who will assure his safety and learning, then schools should accept that as much as a seeing-eye dog should be accepted. If we are all committed to finding the best ways of assisting our children as well as the adults living autistically, then it can be positive. What I fear is a kind of re-institutionized-like policy for autistic people -- that all autistic kids must be surveilled and go to segregated schools. If the program of surveillance is to simply re-assess a child's need (a child diagnosed early may have been misdiagnosed), and the methods are more expansive -- from play, music therapies and more options suitable for the specific child -- then I'm in support. For Adam's sake, I want to work with others if they are willing to work with us in order that we keep moving forward and say a farewell to days past. We cannot do this, however, without autistic people helping us through the process, or at the exclusion of them. And no movement should feel threatened by including autistic people. If a method is good and really strives to understand autism, it will not wither with the inclusion of autistic people who can communicate.

The truth is, the reality in our home is different than in someone else's. While one parent may wish to wave the magic wand of never having brought a child with autism in the world, there are others, like us, who sigh and wonder what we would have never learned or gained if Adam were different than he currently is. Do I want to take away some of these struggles? Absolutely. But it is very fine line we tread in not only preserving his self-esteem, but in recognizing that his challenges may be the very things that enable his gifts and may have formed much of his unique personality.

What is a mis-characterization of TAAProject's advocacy is a view that there is only one way to do things. We we wish to transmit the message that the huge GAP is society's understanding and attention to the way disabled and autistic people feel about themselves. We need to listen to the the kinds of assistance that they feel was helpful to them as children in order that we may learn (as well as what they need as adults), and we need to listen to how they want to be treated by others in society. We are still stuck in a recent mind-set of institutionalization of cognitively and physically disabled individuals, and in the wake of a disabled civil rights movement (started in the 1960's) we have irreconcilable images and views of disability. This is what we are seeking to change.

If we have different views about curing autism, then that is current truth. That truth may be in part because of our recent history -- discordant with our view of the disabled-person-as-child, with the presumption that they have no means to self-advocate. There is risk to shifting perception and expectations, and to allowing our children to make mistakes, or even letting them move and exist in the world atypically. As parents, we may have to let go a bit and let our children take some of those risks.

We have decided to live our life fully and to be proud of who we are. I do not lessen my expectations of Adam, although clearly see that his path to success may meander. I still expect him to attend university. I expect anxiety, sadness and joys. I do not expect life to be easy, but I do not lessen my expectations that he, like my other step-children currently studying law, could one day be a lawyer for disabled people. A mom can dream inasmuch a disabled person can dream of freedom, for those of us who persevere may make dreams a reality. If you are naive, you position, quite incorrectly, the "Joy of Autism" blog and person behind it, as ignoring all the obstacles that exist. Instead, we live in spite of society's view of us as Tragedy. [capital intended]

This is why the Klar-Wolfond family merges with other autistic people who feel that living "the dream" also comes from a compromise by society -- accept us and let us roam and be included without so much fuss, without grim faces, without so many serious questions, without so many barriers -- many of which are perceptual which lead to passivity, or the belief that it's "too hard" or "too expensive." When we have to keep perky and bright for the sake of another's grim face upon our arrival, that is a stigma we face everyday that is exhausting to us. Wouldn't it be nice if we could walk into a new room that smiled at us? Adam is a bright and beautiful little boy. He does not deserve to be peered at for the sake of it. He deserves to be celebrated -- so says his mother.

While there are devastating moments in everyone's life, being autistic does not need to be characterized as a devastating condition. At the same time, it is okay to speak about devastating moments. Yet, we need to qualify them. What is a tragedy is characterizing an entire life within a thirty-second frame, sound-bite or headline for the sake of fear-marketing. That ignores nearly forty years of lobbying by disabled people that sought the benefits our children have today, as well as the expectation I have now that my son has a right to be a contributing member of society. There was a day when a parent couldn't even have that expectation.

I decided to put Adam's picture in the paper because we are not ashamed of who he is. We are so utterly proud of him. His picture smiling at you says, he and all autistic people DESERVE BETTER -- they deserve to be in our communities, to be included in our schools, and to receive the basic accommodations to enable that to happen.

WE DO NOT NEED PITY. WE NEED UNDERSTANDING. WE ARE HERE AND WE LIVE STRONG.

6 Comments:

Blogger Maddy said...

Don't worry [unduly] about the mis-quotation / mis- characterization, anyone who has been reading your blog knows where you're coming from.
Cheers
Something peculiar has happened to blogger comments so just for now, this is my calling card "Whittereronautism"so we can find each other.

3:41 PM  
Blogger Elissa - Managing Autism said...

Perfect - thank you... you've said all that anyone need say.

...Keep living strong!

5:33 AM  
Blogger farmwifetwo said...

You mean... this....

"When I went back to R's classroom that day, I saw R be invited
up to the blackboard during a circle to spell and print the word 'star' - which he did totally independently, saying the letters as he printed them (largely but firmly with chalk)! Made me think you might try that at
home ie. spelling dictation on a chalk board - or on the computer. He was very proud of himself. Also I was pleased with the books they were having him read (A to Z computer-generated books and comprehension pages; plus
some leveled classroom books). They were at a solid grade 1 level and he was answering 'where' questions (eg. where is the horse - " in the barn" accurately). My memory has faded but I think his answers were done
in Writing With Symbols (did Planet Micro have that program?) . So, as you said, there is much to be pleased with, regarding his programming."

The above was an email from the PDD teacher that goes school to school to school yesterday.
We finally had our "meet and greet - just b/c meeting" last week.

http://farmwifetwo.blogspot.com/2007/12/report-card-season.html

Just think "outside the box".

Sheri

12:04 PM  
Blogger Ender said...

Hey, maybe it will let me post this time, probably not, stupid blogspot! Anyway as I said before it is refreshing to see a parent of an autie kid take this kindof view to autism. I have for too long been dealing with John Best and his kind (who fyi told me about you, though he called you insanity personalified, feel free to go tell him about what your son is really like at http://hatingautism.blogspot.com/ , its the first post there as of now). Anyway I just wanted to say that I am the parent helper aspie over at wrongplanet.net and if you would ever want to talk email me at fnofsports@hotmail.com and I will try to respond soon.

12:49 PM  
Blogger Estee Klar-Wolfond said...

Hi Ender,
Nice to meet you.

Off topic from your comment but i was just thinking as well (as I come to remember him talking about it on The Actor's Studio), that Michael J. Fox sees Parkinsons as a gift in the way he has come to appreciate life and how he discusses that acceptance is really a key to living. We also have a person with Parkinsons on our board that discusses the stigma associated with disease. Disease can also result in disability which then results in people's views shifting and therefore many people not only getting services they need, but also not accepted in the workplace either -- sort of a netherworld.

While disease and disability can coincide, there are many disabilities, like autism, that are derived in vitro. With one in seven Canadians having some kind of disability, we really have to smarten up and begin offering the accommodations, without the stigma, that people need.

3:52 PM  
Anonymous Anonymous said...

To Ender:

Best is very angry about his son's disability. He takes it out on anyone who does not share his worldview on autism treatment. His desire is for his son to improve but people improve in environments of acceptance.

2:49 PM  

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