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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, August 22, 2007


Experience and Literacy

Disabled individuals, says June E. Downing, in her book Teaching Literacy to Students with Significant Disabilities, are often given little experience. As many non verbal or presumed "inattentive" disabled individuals are denied experience, this can significantly delay literacy skills. Downing says that people think that disabled people won't "get" anything from the experience, so the average person thinks, "why bother.... why take a blind person to the zoo? What would they gain from that experience?"

"Literacy builds on our life experiences, which is why it is imperative to provide children with multiple experiences to support their learning. Children with severe physical impairments may lack experiential learning due to the difficulty they have walking and physically exploring their environments (Blishcak, 1995). When childrlen have significant disabilities that may involve the multiple impact of physical, cognitive, and sensory impairments, the ability to explore and learn from this exploration may be even more hampered. To compound the problem, experiences can become limited as care providers question the value of these experiences. Instead of supporting the child's involvement in varied experiences on an ongoing basis, the decision may be made to keep the child at home, where he or she is most comfortable. Unfortunately, such a decision further handicaps the child, making it more difficult to acquire and understand basic concepts." (Downing, pp. 9-10).

She suggests that the compounding of reading, exposure, experience and varied teaching is the path to literacy. Sadly, at school, many students with significant disabilities seem to be overlooked (Downing) when it comes to such opportunities.

I see it in autism. I see an over-generalization, and a plea for money that rightfully belongs to all people of disabilities and I would hate to see funding get taken away for educational opportunities for others. The more I begin to study the other disabilities alongside autism, I see that autism is not all that dissimilar. There may be differences in some areas for autistic individuals for sure, and we need to build the understanding and sensitivity around those issues. However, we've made "autism education" and "autism funding" much too daunting. Few want to teach an autistic student. The path to acceptance, in my experience and many of my friends with autistic children, is empowering the teacher -- the "try this" approach that lets the teacher experience success. The teacher then feels that the teaching of an autistic individual doesn't have to be as daunting as it sounds.

In much of "discrete trial" teaching or ABA or whatever you want to call it, I see a lot of table-teaching of very young people (age two years). Sure, there is NET teaching too (Natural Environment Teaching), when the therapist believes it is time for the child to "generalize" his/her skills. It is a subjective choice by the therapist or supervisor, often based on the child's ability to respond to questions in a typical way, or do a task the way that is expected. In the meantime, hours, days and months pass by and the child loses experience because the therapist doesn't believe that the child can garner anything from experience without learning the skills at the table, first. If they child is on an outing, they are again expected to respond, to act typically, to talk in at least declaratives, instead of being allowed to experience in a way that may be unique to them. The emphasis in today's "autism education" is too heavily weighted in letter naming, letter-sound association "before accessing meaningful literacy," says Downing. She calls it a linear sequence of isolated skills.

We all need time to filter -- to let experience penetrate all of our senses. We need time to process, to get used to new things without being pressured or judged.

Teaching and experience must go hand and hand. A teacher has to believe in the innate garnering and registering of experience of the person they are seeking to teach.

Once in a while, a family member of mine would say when demanding "hey Adam look at this," or "do this," or "touch your nose," to appease his desire for Adam's normalcy, I suppose. When Adam didn't do it quickly enough or at all, this person would say "oh, he doesn't care." I don't think it was judgmental in a bad way, but it is certainly indicative of how most people view autistic people -- something we've all talked about so much on our blogs, so I don't need to repeat it here. And we all know that an atypical response or what we perceive as non response is NOT no response, or a lack of understanding. It is an inability to respond in a way that the rest of us have learned so we do not understand it.

That said, I believe in experience. No matter how hard it is -- when a child has a meltdown and you feel like melting away as a parent -- we have to get up and keep trying. Dinners out, the zoo, the movies even if for only ten minutes at a time -- we've got to keep exposing our children to the world that also belongs to them. Experience also requires time away from the table.

As for the blind person who "wouldn't get anything from going to the zoo," read about the blind person who shot a hole in one.


Blogger mumkeepingsane said...

I absolutely agree. In our lives experience is often the number 1 priority. Patrick's kindergarten teachers welcomed him with open arms and we all gained the experience of success.

8:25 AM  
Anonymous farmwifetwo said...

Dr Temple Grandin said the same things in May when she was in London. The T's told me he had to learn to sort and match first... yet he has always loved books and stories... but no... matching was more important... UGH!!!!

I think that's why my children do so well in public. They have always been dragged here and there since they were infants.

When we are in public I expect appropriate behaviour - no meltdowns, no getting up from a table in a restaurant etc. At home... we're on our way outside.. We'll swing.. and then we'll play.. how he wants to. And if it's running up and down the fence... so be it. We can work with that...


10:55 AM  
Blogger Martin Cross said...

This comment has been removed by the author.

11:05 AM  
Blogger Estee Klar-Wolfond said...

Oh yes, Martin. So true. It's that reciprocity that Dr. Gernsbacher coined and I think it's the BEST word to use.


Yes, I think that's why Adam is doing well too. I drag him everywhere and yes, in the past, we've had some rough times. He has to become accustomed to things while I respect his need. Perhaps we do things a little bit at a time, and Adam shows me when he is really ready too. I think exposure, respecting the child, and not worrying so much about the outcome is helpful.

1:02 PM  
Anonymous farmwifetwo said...

I'm not crazy enough to take them on a 3 hour outing. We go, we get, we come home. I make it their size, and yes, I'll push it. Sometimes it works, sometimes not so well. But always the next time is better... most of the time :)

I read "you're going to love this kid" as I am looking for something for his Gr 1 teacher and the school. I felt it was too overwhelming for a teacher that new very little about autism. I'll request the book you just offered from the library/Illo system. The other came from Queen's Univ. I'll keep looking.

13days and counting and I've started losing sleep again.


2:21 PM  
Blogger Estee Klar-Wolfond said...

Yes, you are probably right about Kluth's book regarding someone new to autism. It's someone who is already working with autistic children.

For a really new person what about Then Things Every Child with Autism Wishes You Knew?

Then, it is good to read books written by autistic people.

Would be an interesting reading/recommendation list -- the primer to full inclusion.

4:25 PM  
Blogger Ian Parker said...

We're pretty big on experience too. We're lucky in that the Bear likes going out and has no issues with sponteneity or time limits or meltdowns. She only gets upset if she gets bored.

We have Zoo memberships, and the Bear is a regular at Canada's Wonderland. I usually take her with me when grocery shopping, or to other stores. She's been strawberry picking, seen fox hunts, visited Centre Island, and I can't really think of anywhere that I couldn't take her.

To me this serves at least two purposes. The first is to give her a variety of both ordinary and different experiences that will expand her world and help her to learn. The second is that people get to see her, a happy, smiling little girl who is clearly enjoying herself and has as much right to be there - as herself - as anyone else.

10:25 PM  
Blogger Another Autism Mom said...

Teaching Literacy - Thanks for referring us to June Downing's work. This is huge to me. One of the things that are getting me excited about my son's development recently is that he is finally enjoying when I read books to him. Of course it can't be ANY book. I choose the titles carefully by looking at the language and pictures and content, to make sure it will be a fun reading for him, without being too difficult to understand, but with just enough new vocabulary that will be a good learning experience for him.

I'm all for the hands-on, outdoors experiences, but there's so much more in the world that we can't access and the only way to show them to a child is by reading, or talking. Helping my son acquire more receptive language (and expressive, too) is my #1 priority.

11:15 AM  
Anonymous Anonymous said...

Great post, Estee. Literacy is the key and a print-rich environment goes a long way in making it possible. While such an environment can be achieved in a segregated classroom, I have found with my son and with so many other kids with significant disabilities that's it's more likely to be achieved in a regular classroom. Hence, the push for inclusion. I wish you could have seen the opposition to my son's inclusion from parents of typical kids when we first adopted him and insisted on a regular classroom. By the end of the first year, these same parents (I write about this in my book) were ASKING to have their kids be placed in DJ's class the following year. They saw that inclusion was good for everyone, and they saw, as well, that many of the techniques used to teach literacy to kids with disabilities also helped typical kids. We have to get over this notion (which showed up in many of the responses to the recent TALK OF THE NATION piece on mainstreaming) that it's EITHER the welfare of typical OR the welfare of disabled ones. It's not a zero-sum game with limited dollars. Inclusion doesn't have to be that expensive, as my wife and I have proven first in Florida and now in Iowa. (And if anyone here wants to suggest that my son was EASY to include, they should definitely read my book.) In fact, studies have shown that segregated classrooms and center schools are much more expensive. I know, one approach doesn't fit all, but I really believe that both the aims of literacy and a more inclusive and accepting society are best served by inclusive classrooms as early as ppossible. We all need practie building generous communities.

--Ralph James Savarese

11:18 AM  
Anonymous farmwifetwo said...

The teacher has the "ten things" list b/c she had my other son in Gr 1 and I gave it to her then. I also gave her one of my AO mag's had an Asperger's article that was close but not quite right and was surprised when she mentioned "I was having trouble with the lack of eye contact". Yet, after reading the article no longer worried about it. He was learning and quickly.

Yet she's taught for atleast 20 yrs.. and my kids are still very new to the school.

It was also nice to hear "he did better than we dreamed this past year" about the youngest in SK this past year. I hope they now view teaching him as a challenge (see who can teach him the most), not with fear.

Ralph - I have a copy of your book here. Our local library just bought one.. ok, I asked for a copy. It's next on my reading list.


1:53 PM  
Anonymous mom to max said...

nothing can take the place of real life experiences. love your blog and glad i have found it. if you don't mind i am gonna link to you.

12:13 PM  

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