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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

Wednesday, February 22, 2006

 

Stumbling Over Words

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

Insidious harm can most definitely dwell in words.

13 Comments:

Anonymous kyra said...

remediation means to me what helping your child to live in the world means to you. same goal, much of the same approach and all of the same love, respect, and admiration for the uniqueness of our children.

7:54 AM  
Blogger Kristina Chew said...

Charlie's difficulties in communication have taught me much about how hard communication is---and how much we need to keep analyzing our words and those of others', and to keep asking questions of ourselves.

9:38 AM  
Blogger Lisa/Jedi said...

estee,
I am so sorry that you have been taking the heat for your views. I find your courage to state your perspective & evolving philosophy (not to mention sharing what you are learning) very inspiring. Of course, I seem to share your perspectives, so I would :) For me the bottom line is respect. Yes, I have "remediated" my child to a certain degree. He was not born with binocular convergence, so he underwent 1 1/2 years of intense visual/perceptual therapy, the result of which is that he can read! He also has nearly functional handwriting after 4 1/2 years of OT, but since we learned that kids on the spectrum function better with direct computer interface, we have put handwriting on a lower priority (he is in grade 4 & we've decided to bag cursive writing entirely) & emphasised keyboarding skills instead. This seemed to us to be the most respectful way to address his need for fluent communication & everyone on his school team, including his OT, agreed with us. I respect & love my son's uniqueness & recognise that it is his autism who makes him the person I love. I also respect him enough to give him medication for OCD, which was causing him to have psychotic episodes & severely affected his quality of life. It really is a tight-rope-walk, parenting a spectrum child respectfully, but I firmly believe that those who are looking for a cure are buying into society's often dysfunctional & damaging ideas of what our lives "should" be like. I'm glad to be on the "road less travelled". It's harder, but the journey is rewarding, & company is far preferable :) Keep up the great work, estee!!!

9:45 AM  
Blogger Do'C said...

Estee,

I thought your previous post was extremely thoughful and expressive about the true nature of acceptance and did not equate that in any way to "sitting idle doing nothing".

I'm not sure how that was misinterpreted by others.

Although I did pick at one word near the end, please don't take that personally, it was not intended to be.

Overall I find your writing, extremely clear, expressive, and helpful personally.

9:47 AM  
Blogger notmercury said...

many of us are simply trying to help our kids learn within the environment we live, and with the obstacles that are present

Perfectly stated. If this is you "stumbling" then you should put on some skates and take up figure skating.

IMO, as long as you are true to your heart and speak from the heart, political correctness will be trumped by honesty and truth. No matter what you say or do you there will always be criticism.

Worry about what's right for Adam first and continue to listen and consider input from all sources, and you can't go wrong.

He is a lucky boy to have such a thoughtful and sensitive mom.

10:41 AM  
Blogger Estee Klar-Wolfond said...

Dad of Cameron,
Not at all was this directed at you. But thanks for the kind words.

To everyone,

Incredibly thoughtful replies...thanks for all the wisdom!
Estee

12:13 PM  
Blogger Jannalou said...

I have an “antibehaviour behaviourist” (her words, not mine) consultant on my team, who has learned to welcome many styles of teaching.

I would love to be in conversation with this person. Can you pass along my e-mail address to her? uncommonatshawdotca.

Accepting autism does not mean that we as parents do not want to help our children function and hopefully enjoy the world in which they live.

And this is the thing that the "curebies" don't understand. It bothers me so much to take the time to figure out how to say something as clearly as you have put it here, and to have others negate it by refusing to really listen to it.

You are eloquent, Estee.

12:28 PM  
Blogger Estee Klar-Wolfond said...

So is the nature of saying anything...it is likely to be slaughtered and misunderstood. Nonetheless, look at all insightful comments, both for an against, that "saying it" derives.

12:47 PM  
Blogger SquareGirl said...

Estee, your last two posts really hit home with me...I will refrain from going on in your comment section, but may send you a personal e-mail...I love your courage and what you are seeing and saying about autism. I have concluded that there is no "right" language when it comes to autism, because each individual is different when it comes to how they would like to be labeled. When I work with the children I do, I ask their parents how to refer to them...I always get a different respons ("has autism", "is autistic", "is mercury poisoned", "is/has aspbergers", "has special needs", "was diagnosed with autism"etc.) and then I refer to them as the label that they have chosen...that is until their child is old enough to tell me his/herself what he/she wants to be called. I also like to say that there is really no such thing as special needs, but "individual needs" and every living, breathing thing has "individual needs". I may be naive, but I look forward to a day when society is so inclusive, accepting and aware of individual needs and how to address them that labels become uneccessary as we take the time to get to know people individually, not by a semantics.

1:56 PM  
Blogger Mom to Mr. Handsome said...

Estee,

I agree with you in the respect that I want to help Gabe be the best person Gabe can be, but I also realize that Autism is a part of Gabe. It is not something that will go away, but is something that defines part of who Gabe is. If Gabe's Autism did'nt make him so vulnerable in society, I just maybe able to embrace the qualities of Autism that do not interfer with his safety.

Kristin

2:48 PM  
Anonymous Bonnie Ventura said...

It is so true that insidious harm often dwells in words. Many people are not even aware of the harm they are doing.

There is a South African charity that has started selling bracelets with the word "MINDBLIND" to raise money for autism awareness.

http://www.autismwesterncape.org.za

That's like a charity for underprivileged minority children deciding to raise money by selling bracelets with racial slurs.

I told the charity's executive director what I thought of that and sent him some autism rights links. I don't know if he'll read them, but if enough of us take the time to challenge harmful and offensive language when we see it, we can make a difference.

4:02 PM  
Blogger Kev said...

Great post.

A few years ago the Daily Mail (a UK tabloid) ran a piece describing autism as 'a body without a soul'. Nice.

Words really do matter. The nuances matter, the inflection matters, the tone matters.

5:44 PM  
Blogger Zilari said...

I also like to say that there is really no such thing as special needs, but "individual needs" and every living, breathing thing has "individual needs".

Beautifully stated. I am so glad you are putting your words online for people to read...you are saying things that so desperately need saying. One of the biggest reasons for confusion and sadness in the world, and particularly in the lives of those who are "outliers" on the scattergraph of humanity is that there is so little tolerance for anything outside some sort of very narrow classification of being. This is just an unfortunate consequence of social evolution...probably traceable back to the industrial revolution, with its assembly lines and interchangeable parts. No human is interchangeable with another. Respecting individual needs is respecting the individual.

11:37 PM  

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