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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, February 20, 2006

 

No Pessimist Ever Discovered the Stars

It is wonderful how much time good people spend fighting the devil. If they would only expend the same amount of energy loving their fellow men, the devil would die in his own tracks of ennui. Helen Keller

There is such dissention among parents about autism. Parents “fight the battle against autism,” “remediate autism,” and use behavioural methods to make their kids more like them. Let’s stop beating around the bush and call a spade a spade.

I understand and empathize with the process of learning about autism and how difficult it is to just accept it -- the way we view the world is difficult to transcend. The important point is to transcend it.

I will reveal how I’ve come to this point on my journey, a journey like every other parent I’ve read, more or less. First, I noticed parents were in some kind of reticent competition to see whose child was “doing better.” I noticed this when my son was first diagnosed – some sort of strange comparison between parents as to whose child was going to “beat” autism first. It was thought that if one child was verbal, that child had an advantage over the other. We all wanted our children to be PDD-NOS or Aspergers, if we had to have a diagnosis at all – anything that eluded to normality, better functioning, and to being more acceptable to society. Catherine Maurice said she “cured” her kids of autism. We all believed her. So, we all wanted to try as many strategies as possible to “remediate” the autism, and most of us went to every conference and workshop imaginable (RDI, Floortime, ABA conferences…I traveled all over the US in search for a way to "cure" Adam as "quickly" as possible).

If I had to describe my journey in all of this, I can tell you right off that not one person could “cure” the autism out of Adam. I hired and brought to Canada every person I could. If I couldn't, I went to the US to visit them personally. The unexpected happened during the process -- another kind of transformation, and a more fundamental and important one at that.

When viewing how little “experts” understood my son, and viewed him as pathology, a set of “behaviours,” or as diseased, I knew that we had taken a wrong turn. When we practiced more social strategies (RDI was a turning point, I must say), Adam lighted up. It was like he was happy to be acknowledged, to play. But the Connection Centre took our full fee and stopped servicing us because I needed to integrate their strategy with ours. Doing an obstacle course three times a day for fifteen minutes hardly seemed like enough. (We never got our money back, by the way). Just before I was to enter Adam in nursery school, Dr. Gutstein told me directly not to: “It doesn’t matter when he enters school,” he said to me firmly. While I agree, it hardly matters in the sense of time, it did in that Adam derives a great deal of satisfaction from being with peers and is a wonderful observational learner. I wouldn't have discovered that if I hadn't put Adam into school.

We still use many modals of teaching today, but in our own way that is successful for Adam. Everyday, we do the hard work of figuring out how best to teach Adam – and believe me we really have to find answers ourselves. I always appreciate a new strategy practised or researched by another to see how we can cull from it. Adam, if I must provide a progress report (seems to be wanted) is happy, he is in nursery school and he will be attending a “regular” primary school -- I am working with that school to obtain the accommodations he needs. I found a school that is flexible, private, and willing to work with us to teach Adam in a way he needs. None of this will be easy, but I find a positive attitude goes a long way with teachers.

Over time, in researching autism and running my son's team as my full-time job, I stopped listening to the “experts” and turned to people with autism. It is through them that I am at a wonderful place on this journey – learning to absorb, live with, and continue to try and understand autism perspectives. I have come to view it as another marvelous way of being and I believe this benefits Adam and my entire family. Adam continues to learn as we respect his many needs. I believe he could have become aggressive, banged his head – and he might if he meets the wrong teacher. I know that it is because we acknowledge his frustrations and help him through them that he is a “well-adjusted” kid – he seems to be developing good sense of self and a healthy attachment to me. There were signs early on that this could have been quite a different scenario. Had I listened to the experts, we would not be at this point today.

Stephen Shore is autistic and obtained his doctoral degree in Special Education at Boston University. He noted that during his day, there were no interventions for autism, with the exception of his mother who did "what she felt was right." (from Reflections of a Different Journey: What Adults with Disabilities Wish All Parent's Knew, p.57). "It is important to do what seems right for your child."

All in all, a parent really has to learn, study, and trust themselves and respect the point of the journey that they are on -- the journey never ends. I know this is hard to take in an era of gurus and genome research – and a view of science as a new God with supposed cures and answers for everything. At the heart of the matter, this all has to do with embedded stereotypes about disability.

Here are some points that I have come to learn and believe on my journey as a parent of a child with autism:

1. All autistic people deserve to be accepted for who they are with autism. They cannot change, and becoming “indistinguishable from one’s peers” should not be the ultimate goal in teaching them. In fact, it’s a horrible and sinister goal.

2. People with autism deserve a right to be treated and taught intelligently and be offered the supports that help them learn in the style that befits them. Not all autistic people learn in the same way; not all autistic people are created equally.

3. Autism cannot be remediated. Period.(Semantics reflects thought so watch your words!)

4. No parent should support any organization that seeks to cure autism. Any one person or organization that uses these terms is fundamentally against the lives of our children. To them, my child is an aberration, and the “enemy.”

5. My child deserves to have patient teachers -- ones that do everything in their power to find what drives him to learn.

6. My child has a right to learn the following: want, wonder, discovery and desire – not simply learn “how to respond.” He has the right to choose and make decisions about his own life and to be presumed competent.

7. My child deserves and will likely go to university. A child most often (albeit not always) lives up to the expectations of their parents. It's all about what we believe. Further, various supports and accommodations at university can be made.

8. Achievement carries no timetable.

9. As a parent, I am my child’s one and only advocate. I do not expect an expert, a teacher, and an organization to do this for us.

10. No Jim Partington, Catherine Maurice, Steve Gutstein, Ron Leaf, Stanley Greenspan and the like is our saviour or will save my child from autism. Some people have talents in operationalizing teaching methods. These people have done just that. There are good things in many methodologies, but not one is “autism religion.”

I highly recommend autism cynics to start reading books written by autistic people. Also, read Reflections from a Different Journey. (See sidebar).

No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit.
Helen Keller







18 Comments:

Anonymous kyra said...

i applaud your committment to listen to your heart and your child. i don't relate to much of your experience in that i didn't feel a part of a race or comparison or competition and don't now, and i always knew that i was the expert on my son and no one OUT THERE was holding the magic pill, but i can relate to the passion and love you bring to your parenting and the intensity of your thoughts and feelings. remediation simply means, restoring normal functioning to,and while i have issues with the word 'normal', i believe that one can restore greater connectivity to the brain of ASD kids and people which i think is a wonderful thing and not a horrible terrible thing at all. frankly, it is well understood in the field of neuroscience that our relationships, our interactions shape our brains. we do this whether we are thinking of it or not. not wanting to find ways to relate that would create the greatest possible stimulation and growth in our children is sort of odd to me.

anyway. rock on. i send my best. may ALL voices lift up and be heard.

5:35 PM  
Blogger Jannalou said...

Thank you.

I admit that I've been weepy lately due to a change in meds, but even without that, this would have affected me deeply.

My parents raised me like that. I didn't have a diagnosis (I have ADHD), and nobody thought I needed one except me once I got sick of feeling incompetent all the time.

But I wasn't incompetent when I was growing up, and I place all credit for that directly in my parents' hands (well, them and a few choice human beings who were teachers in elementary and high school).

These people treated me like a whole human being. They allowed me the opportunities I needed to explore my creativity, to explore my world. They let me explore topics that I found interesting - and they encouraged me to pursue those interests as possible jumping points for a career.

They continue to do these things for me now that I am an adult who is beginning to know herself as a competent, talented, beautiful woman.

The people who did the most for me during those growing up years, they weren't the ones who told me I needed to try harder, or that I could do better. No, it was the people who saw my strengths and encouraged me to develop them... the people who valued me as I was and at least saw that some things were never going to be easy for me, regardless of how simple other things were.

I think that's the hardest part of this whole "disability" thing. With something like autism or ADHD, the gifts and talents are taken as indication that the person must have other abilities that simply aren't there.

Sure, I have artistic talent and I enjoy math. That doesn't translate into being able to keep my house clean or managing my finances properly. But somehow I'm supposed to be able to do these things because I'm an adult, and it is difficult to locate any assistance that is geared towards adults who have ADHD, largely because I've always been employed. I may have been making just barely enough to pay my rent and buy food, but I was always working. Now that I'm working full-time and likely to remain in this position for a long time, I hope to be able to afford to hire a cleaning service. I'm still SOL with the money stuff, unfortunately.

I will stop - tangents are my MO, and it's a little silly sometimes.

I'm in Alberta, by the way - one of the dumber provinces I've worked in as an autism support worker (out of ON, BC, & AB). I just do occasional respite now; my day job is as a church secretary.

5:42 PM  
Blogger Estee Klar-Wolfond said...

Kyra,

This is not an argument of with-holding a child's need to connect with the world. In fact, I'm doing quite the opposite. "Remediate" is the wrong word to ascribe to this process. I am not wanting to "restore normal functioning" in Adam, because, as people with autism will tell you, they do not see the world the way you and I do, and further, we should regard them for who they are.

Besides, "normal" is relative. It means nothing. There is no normal.

I suppose the goal you are positing should be re-worded: you are trying to enable your child within the environment we all live. (?) This is a realistic goal to a point. Then, there is a point when we have to accept difference in its entirety. We can't accept only half of our children: the "remediated" half.

Estee

6:21 PM  
Anonymous Kassiane said...

Beautiful. I love to see the love you have for your son, as he is, after all the vitriol from the "curebie" parents.

Your son will achieve. You're absolutely right about expectations. Absolutely right.

Kassiane (author, "reflections" and "ask and tell", advocate, and most importantly, autistic)

7:07 PM  
Blogger Do'C said...

Estee,

Exremely thoughtful and clear!

;-)

7:33 PM  
Blogger Estee Klar-Wolfond said...

Jannalou,

Thanks, Jannalou...Alberta is hardly a dumb province!!

Estee

8:30 PM  
Anonymous abfh said...

I agree with you that "remediating autism" is the wrong language to use. It may be reasonable to talk about remediating a particular area of deficit or weakness, in either an autistic child or a non-autistic child; the word is often used in this sense when discussing remedial education. Speech therapy, for instance, could be described as remediating a difficulty with speech.

But when autism itself is described as a deficit to be remediated, that gives the impression that there is nothing worthwhile about the autistic brain and, by a logical extension of that line of reasoning, that there is nothing worthwhile about an autistic person who has not been cured. It also suggests that whenever an autistic person has any problems, the autism is entirely to blame for the problems. Such language fails to acknowledge the many ways in which prejudice creates problems that would not otherwise exist.

Autism does not separate a child from others, distort his self-image, and impede what would be his natural feeling of competence and confidence. Prejudice does that. When autistic children are fortunate enough to grow up in unprejudiced and accepting environments, they are likely to become confident and socially connected adults.

8:35 PM  
Blogger Do'C said...

Hi Estee,

I just re-read you post and am printing it as suggested reading for my wife.

I do have a question though.

Perhaps I am far too literal (and can't help it), but I want to understand what you mean by:

"I highly recommend autism skeptics to start reading books written by autistic people."

I consider myself a skeptical thinker to the core. I question everything, and seek to know things as close to possible as they truly are, regardless of who's telling the story. Skeptical about autism to me, means to know all perspectives on the issue and to be open minded to new ones. My skepticism of autism leads me to "neurodiversity" as the current logical understanding.

Did you mean autism cynics, as in contemptuous toward autism?

10:58 PM  
Blogger Kristina Chew said...

The one thing I have learned through years of ABA and VB and many biomedical treatments; through many years of teaching and studying and learning from students who are "different" at the university is that there are no clear goals in this autism world. Getting to university is just another fiction of the normal. A child can start to head-bang out of nowhere and the culprit turns out to be over-stimulation of a sensory nature. Autism is about turning the expected norms upside down and asking us to put aside what we had thought we "dreamed" of and forging a brave, new, strangely--terribly--beautiful new world.

12:54 AM  
Blogger Sam I Am said...

Amen again! You write what I have felt. Even the things like "We all wanted our children to be PDD-NOS or Aspergers, if we had to have a diagnosis at all".

I am immersed by families we meet through speech/ot therapy, school, and support groups who jump on every bandwagon for a cure. I feel like I am not doing enough, yet I have quit my tenure of teaching to manage and be my son's full time mom, advocate, teacher, therapist to name a few. It is through truly knowing our own children do we serve them better.

I didn't listen to myself, when I knew at 4 months, that something then was already so different from my other child's development. We depend on the experts so much instead of depending on our heart.

A double amen to your....4. No parent should support any organization that seeks to cure autism. Any one person or organization that uses these terms is fundamentally against the lives of our children. To them, my child is an aberration, and the “enemy.” I have struggled with many of my nations (US) organizations who encourage drastic measures to cure autism with sometimes high risk to the child. All to get their child to be normal.

I don't want them to see my son as normal, I want them to see him as Sam. I too can not support these groups that make me feel like my child needs to be fixed.

Truly... DAN (bimed), RDI, ABA, Greenspan, diet, vitamins....whatever the cures are.....if one of those truly worked, why wouldn't we all be doing it. There isn't one thing. It is a combination, it is knowing our own child, of which each one's own chemistry is even different.

I love your blog, it inspires me, it reminds us all of the importance of looking at the glass half full! Thanks.

2:08 AM  
Blogger Estee Klar-Wolfond said...

Dad of Cameron,

Yes, I meant cynics not skeptics. Thank you for correcting me.

Kristina Chew,

No, I don't think university is necsessaily "another kind of normal" in the fashion that I mean it. I simply mean to state that I believe in autistic intelligence and the right for people with autism to be able to attend university, which is accomplished by some. It should be availalbe to everyone with disabilities and it doesn't matter when in the lifecycle.

As for head banging, hmmm, my son has never done it so I'm not an expert here. But from every account I've read from people with autism, not parents, it is sensory, yes, but comes from the frustration of not being understood by people around them. This by no means a self-righteous statement!! I am just conveying the accounts I've read. Read the second last book I recommended in 2 posts ago: Through the Eyes of Aliens: A book about autistic people, by Jasmine O'Neill. It's a good one to start with.

Estee

7:13 AM  
Blogger Estee Klar-Wolfond said...

Regarding tantrums,

My Autistic Boy blogger is really lovely. She writes purely and honestly about her life with her son. She also mentions how she came to learn that her son has difficulty with tantrums and is frustrated and confused.

Having a child make themselves understood must be a relief and I am not suggesting we do not help with this -- communication can happen on many levels, though. Not just "speech."

We all have to find that crack in the divide between two worlds.

Estee

8:32 AM  
Anonymous Emily said...

This is a great post! I like your list especially.
I've been on this journey to better understanding too. I remember when my son was barely 2, just before diagnosis but after he'd started speech therapy, his therapist kept telling me that he was so little that anything could happen. She meant that he might turn out not to be autistic, and I kept hoping she was right.
Well nearly 4 years later, he's still autistic and he's thriving on love, lots of play and the attitude that whatever he's focusing on is what he needs at that particular time. I've read a few books by the experts and looked at some web sites but never pursued any of their expensive therapies, thankfully!

11:12 AM  
Blogger Heidirific said...

Estee,

I have recently discovered your blog and really enjoy it. As a Speech-Language Pathologist, I enjoy reading about other's perspectives, especially parents'. I also really appreciate your perspective in this post. I think a lot of professionals do tend to ascribe to a treatment methodology instead of combining methods in order to help the children they work with learn.

You are absolutely right that communication takes many forms and responding to your child's nonverbal communication and acknowledging his attempts to communicate reduce frustration. I look at communication as a process, it is not just speech.

I also found the comment that speech therapy as remedial from another commenter interesting. I don't see therapy that way. My job is to enhance functional communication, understanding of language, and teach children as effective of ways to communicate as possible. I do language work and some speech work, which I guess is remedial but a lot the speech difficulties I treat (dyspraxia, dysarthria)will not truly go away. The "symptoms" diminish but the underlying difficulties are still there. I also work with mostly nonverbal and children with moderate to profound cognitive impairments.

4:20 PM  
Blogger Brett said...

Unfortunately, you are right that the wrong teacher or setting can have a drastic negative effect on our kids. I've written about our early bad and ugly experiences before. While we as parents are the 'experts' on our kids, we have to make sure we pick the right team to support us. Sometimes (most times), this is easier said than done.

Thanks for sharing your journey, I think it will help us all as we chart out our own.

Brett

4:40 PM  
Blogger Lora said...

Superb writing. I am more and more thrilled that I have found your blog with every post that I read. At this rate, I will have read the entire blog before the day is through.

6:46 PM  
Blogger elmindreda said...

Very nicely written. You give me hope.

8:22 AM  
Anonymous Shawn said...

Very well said Estee. I've been more or less off-line for a while. I'm glad I didn't miss this post.

9:37 PM  

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