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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

Thursday, February 23, 2006

 

Asking The Questions -- Deconstructing A View

In a world that I cannot fully understand how do I know how and what to teach? I’ve asked the question to Zilari who wrote a great post “Listening or Not Listening” about what is important to teach autistic children.

My main concern is that we are trying to teach “connections,” and “appropriate responses” to people who see the world upside down, so to speak. I am doing just this – trying to interpret Adam’s perspective and finding the modes of teaching that will nurture his inherent strengths. Because we live in the environment we do, see the way we see, we do not know what else to teach. We set up classrooms in a particular way, we talk to respond to questions, write tests -- it seems that autistic intelligence and perspective is completely different from our own and that perhaps we should not be the ones imposing teaching styles and methods upon our children. So, hopefully our friend Zilari (and the rest of you with autism, I hope), will continue to shed light on this as much as Larry Bissonnette, Sue Rubin, Lucy Blackthorn did in Biklen’s book Autism and the Myth of the Person Alone.

I also find words of wisdom from Squaregirl, who is autistic and teaches children with autism. Donna Williams who consults online has agreed to attend my festival this October. I have also discovered a great deal about Adam through correspondence with her. In trying to support people with autism, I really seek out their advice. It largely comes out in their writing, as it can be the easiest means in which to communicate.

Donna wrote me that typical teaching styles do not always befit the child. In the case of Adam, he is like a “cat,” she said, and when cats are ready, they will join in. I don’t think that RDI or ABA will be patient enough for cats. RDI claims that the autistic child is “confused” about the environment and we, as parents, have to be their guides. That sure makes sense to me. In this methodology, we are teaching children how to have a relationship with us, assuming that this could never develop on its own, in an autistic way, and perhaps that way is not acceptable to us as parents who long to hear the voice of their child, who crave a hug and affection. But does this show of affection and relationship mean the same thing to an autistic person who doesn’t see anything inherently wrong with the way they see things, but rather, struggle within a world that forces them to be like us, or may show affection in an utterly different fashion? Did Tito’s insistent mother convince him what was “good” for him? Did Stephen Shore, whose mother didn’t have any interventions, fare any worse? Acceptance and what that fully means is a fundamental question as I continue my struggle to understand.

As a parent, it feels wrong to sit and do nothing. There is an autism culture out there pressing us to give our kids tons of remedies and therapy. Our culture is wrought with pressure to hire an expert, buy a drug, go on a diet…DO SOMETHING to fix things, because the way things are can never be right. There is always some marketer out there who says we can have more, do better. Then, in our kids we see improvements, so it must be right, right? Do we ever consider if “improvement,” whatever that means, could happen on its own, with an individual’s development of consiousness or SELF? Afterall, where would these kids be without remediation? Out of love for our kids, I too justify my actions – trying to help Adam “connect with the world” (do I presume he doesn’t in his own way?), respond, get by in school, keep him safe in an unsafe world. All seem to be worthy goals, and they are done out of sheer love, and fear, for our kids.

Mainstreaming seems to be a goal too – anything that helps our kids “blend in,” garner a group of peers so they won’t feel alone – this is one aspect of autism that shakes us parents to the bone, and one that kept me in shock the minute my husband uttered the word “autism” on November 28, 2004 at 3:30 in the afternoon. Picturing my son without friends, or with peers that look at him oddly, judgmentally, simply broke my heart.

Today, when I read people with autism, I feel more at ease about autism but now worry that what I am doing still does not honour Adam’s way of being fully. The intellectual debate is important because we are at a stage when we do not accept difference and disability entirely.

In a discussion with my husband about words, he stated that the word “remediation” is like “splitting hairs.” His eldest son, who went to an all boys academic school, did a math remediation course, he said. So, on the surface it seems harmless. And yes, it may be splitting hairs. But what of “remediation” classes for special needs kids in public schools? Is that the right word? It offends me because it assumes that all special needs kids are cognitively delayed ---that they need to be fixed.

“Too often, individuals with autism are asked to make accommodations, to use `typical behaviour,’ and to learn `appropriate social skills.’ Instead of asking students with autism to make all of the adjustments, teachers and students without identified disabilities can rethink their ideas about concepts such as `typical,’ and `appropriate’ and question whether conforming is always the best way to support students with autism. For instance, instead of asking the student with autism to study all of the social norms of attending a basketball game (e.g.; sitting on bleachers, cheering when the home team scores), all students and teachers in the school might expand their notions of what appropriate participation looks like." (From Paula Kluth Your’e Gonna Love This Kid: Teaching Kids with Autism in the Inclusive Classroom p.107).

Taken a step further, if we can accept differences in development, that development does not always occur on the same timeline for everyone, then we might be able to rephrase education as “individual.” Individual Education. It is a term that is used today but not to its fullest potential. Think of all the skills and talent we could develop if we really understood different ways of learning, seeing, understanding? I think there is a lot of possibility in that. For this reason, I turned to a lot of books on different intelligences and gifted learning to discover that most gifted people have a learning disorder. In the face of autism, that makes complete sense. It acknowledges that giftedness is inherent in so many of us, despite other areas of weakness. If we can view all of us as gifted in some way, in a more general sense, then we might be able to honour the person’s individuality, and difference.

To me this is the most important thing we can do as parents to help our children and ourselves in appreciating them. It is reframing our views, thinking about our actions, our words and what Being, Belonging and Becoming means in this question of what it means to be human.

We are off to Florida to visit Adam’s grandparents now. It is a time when I can stop and watch Adam run sand between his fingers and stand at the foot of the ocean, wondering how this world looks to him without always having to “re-direct” him. There is a kind of freedom in acceptance.

3 Comments:

Blogger Do'C said...

Estee,

I've been really stumbling for a way to express this to my wife why acceptance is so important to me. I'd offer that working on one's self and perspective may even be a tougher task than simply pursuing 'all' that claims to be "doing something" according to the so-called experts. I really appreciated your conclusion and your use of the word "freedom". This helped me congeal my own thoughts on this because to me freedom for myself (and to a large degree Cameron too) and our entire family, potentially translates to so many other good things in the long run - like happiness and sanity.

Thank you.

9:50 AM  
Blogger Jannalou said...

I don’t think that RDI or ABA will be patient enough for cats.

Definitely not.

ABA is based on the premise that "if the child isn't learning, the teacher is doing something wrong". Which isn't necessarily a bad way to look at things, but maybe, just maybe, the child simply isn't ready to learn that particular topic yet, and it would be better to wait instead of continually changing methods to "keep it interesting" etc.

I'm not saying that it's "the child's fault" here. I'm saying that sometimes, it's nobody's fault. It's just the way it is. And continuing to push doesn't benefit anyone: not the parents, not the therapists, and especially not the child.

I'm about to go off on a wild tangent here, so I'll quit while I'm ahead. ;)

11:48 AM  
Anonymous kyra said...

i'm all for freedom. thanks for your post and i hope you all have a wonderful time on your trip.

1:33 PM  

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