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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

Friday, June 15, 2007

 

A Resposne ABA Parents Don't Want You To Hear

Ralph Savarese, author of Reasonable People: A Memoir of Autism and Adoption, recently wrote this to our "autism advocate" in New Brunswick, Harold Doherty. It was in response to this post about Dr. Morton Ann Gernsbacher. Mr. Doherty decided not to print it. I guess it doesn't "fit" his cause. This is a problem if ABA parents will not listen to what autism really is, and of course, not listen to autistic people at all. In fact, I remember talking with Brenda Deskin who refused to read Donna William's books because she said that "Donna Williams isn't really autistic." Government officials and the public NEVER get an accurate view of autism from these parents alone because they refuse to discuss, acknowledge and listen.

Mr. Savarese wrote to Doherty:

I invite the father who insists on varying degrees of competence in autistic people (and who clings to labels such as "high functioning" and "low functioning) to review this new study on mental retardation in autism.

Here's the link: http://www.willamette.edu/dept/comm/reprint/edelson/
The study is VERY provocative because it underscores the historical presumption of retardation in autism and the almost complete lack of empirical data supporting such a claim. New research by Laurent Mottron (Dawson's partner) has found, by changing the testing vehicle, intelligence in even the most apparently disabled. As the father of a boy with classical autism,I can tell you how easy it is to be fooled by autistic behavior, to extrapolate from it all sorts of things: retardation, a lack of
empathy, etc. By teaching our son how to be literate and how to type on a computer,we have found a rich, complicated human being all too eager to connect with us and others--a boy, in fact, who is now a straight "A" student at our local middle school. If you saw him, you'd say he was "low functioning," but he's not. He could easily--with a computer--contribute to a scientific study. If the science on mental retardation in autism is weak, why not practice what progressive educators call the "presumption of competence" or "the least dangerous assumption"? Then, we might really find out who is incapable of doing the things Professor Gernsbacher and Michelle Dawson talk about. Hope is a dangerous thing, especially with all of the quack cures out there trying to deceive desperate parents. But hope seems justified--hope and lots of hard work: TEACH LITERACY!--precisely because the science on autism has been so bad historically.

Sincerely,

Ralph James Savarese, PhD
Grinnell College
Author (with my son) of Reasonable People: A Memoir of Autism and
Adoption


Printed with permission from the author.

13 Comments:

Anonymous -Brian- said...

For anyone to say that Donna Williams is not autistic, that person has a severe mental disorder--the refusal to acknowledge the truth.

Soon, that same person will deny anything they want to--even that any doctor who disagrees with them is, in fact, a doctor. They will not accept the world to be round, as they "know" the world is flat, and that they are the only people on earth to be able to evaluate whether anyone is "sane" or not.

When an autistic person tries to speak to them, they are in total denial and suppression of what that person says--claiming that anyone who claims to be autistic but does not satisfy their personal definition of "autism" cannot be recognitized, as these deniers lack cognition, itself, far more than any autistic could.

If anyone needs to be cured, it's these "know-alls" of the world, who are willing to take on the roll of "God" over everything and everybody. The sooner a cure is found for such a superiority complex, the better off all of us will be, including those autistics who have been trying for ages to have their ideas and creative abilities heard and acknowledged and to be accepted in all parts of society, ...including Donna Williams.

7:37 AM  
Blogger Suzanne said...

I only just started reading but stopped when he said Dr Gernsbacher's article was "flimsy". never!
sorry for that interruption... things are happening here.. I may have to print these out...
THANKS Estee.

8:41 AM  
Blogger Suzanne said...

As the father of a boy with classical autism,I can tell you how easy it is to be fooled by autistic behavior, to extrapolate from it all sorts of things: retardation, a lack of empathy, etc.
Yes, sadly, some parents prefer to see a "train wreck" rather than a person who might indeed have something to say.

8:57 AM  
Blogger farmwifetwo said...

I am floored that buy simply "going through the wall" the amazing intelligence of my 5 year old non-verbal son. His huge capacity for information and ability to read. Watch him use a computer, his leapPad... and you realize he's smarter than other his age.

I'm hoping next year's teacher takes my advice and works with him to use the "writing with symbols" program at school. They are moving the license to his classroom.

I think we're going to be amazed by the end of next year.. what he knows and who he is.

He's still very much non-verbal, uses one words or pecs to communicate at this time.

S.

9:03 AM  
Blogger kristina said...

Teaching and living with my autistic son is a constant challenge to me and I don't mean that it is some terrible ordeal and struggles. It's an intellectual challenge----to understand the world from Charlie's perspective----and promises a good life of learning beside and from my son.

Thanks for posting Ralph's letter.

9:04 AM  
Blogger Autism Reality NB said...

Estee, You should get your facts straight. Mr. Savarese's opinion piece was not received by me directly from him. It was forwarded to me by an "anonymous" poster. [You wouldn't know who that was would you?] I was travelling for work purposes yesterday but checked from my hotel this morning and published it.

You may apologize, if you have the integrity to do so.

9:12 AM  
Blogger Estee Klar-Wolfond said...

I don't see reason for my apology only because Ralph sent me this email stating that he sent it to you and you did not post his comment so he sent it to me. I know Ralph signs the bottom of EVERY comment he sends because he is not a blogger and therefore has to choose the anonymous selection. But he always signs the bottom and he did this one too -- to you.

So it's just that he wanted to be heard. Like we all do. Good to know that you didn't intentionally edit him though. Thanks for clarifying that.

3:15 PM  
Blogger farmwifetwo said...

I requested the book from the library. We don't have it in the county, so the local branch is putting in a request to order it in.

Looking forward to reading it.

S.

5:26 PM  
Blogger farmwifetwo said...

Sorry, should have added this to that post.

Engaging Autism - http://www.chapters.indigo.ca/books/Engaging-Autism-Helping-Children-Relate-Stanley-I-Greenspan-M-d/9780738210285-item.html?ref=Search+Books%3a+'Engaging+Autism'&sterm=Engaging+Autism+-+Books

Giggle time - http://www.chapters.indigo.ca/books/Giggle-Time-Establishing-Social-Connection-Susan-Aud-Sonders/9781843107163-item.html?ref=Search+Books%3a+'Giggle+time'&sterm=Giggle+time+-+Books

Building Bridges through sensory integration - http://www.chapters.indigo.ca/books/Building-Bridges-Through-Sensory-Integration-Paula-Aquilla/9781932565454-item.html?ref=Books%3a+Search+Top+Sellers

3 of my favorite "therapy" books.

5:32 PM  
Anonymous Ralph Savarese said...

I just checked Mr. D's site and I don't see my post. Apologies in advance if I'm too dense to know where it is. Estee is correct: I did sign my post clearly at the end; that's how I sign all of my posts. I have to use the "anonymous" tag because I'm not a blogger. Rather than be sidetracked by invective on either side of the debate, I really wanted Mr. D. to see how poor the so-called objective science of mental retardation in autism has been historically. And also to see that people labeled "low-functioning" are doing all sorts of competent things. Don't necessarily be fooled by autistic behavior and extrapolate from it some fundamental incompetence. There are more and more Autists labeled "low functioning" who are excelling in regular schools, going to college, writing books, etc. The danger in this debate is enforcing some kind of rigid binary: respect/celebration OR realism/resignation. As parents of autistic children, we all understand that autism negatively impacts a child's life, but that is FAR from the whole story. There are also exquisite compensations. More important, there's a human being there, of which the autism is an intregal part. i wish Mr. D. well. I simply want him to understand that the neurodiversity movement is not unrealistic; it simply insists on checking the demonization/pathologization of a condition that is still poorly understood.

Best wishes,

Ralph James Savarese

8:09 AM  
Blogger ballastexistenz said...

Moreover, it may be that the difficulties are compensations for the abilities, rather than the other way around.

11:26 AM  
Anonymous Anonymous said...

Could youiexpand on that...

2:15 AM  
Blogger Estee Klar-Wolfond said...

For those who believe that "low functioning autistics" who can't think or contribute read this:

By ANNE MCDONALD
GUEST COLUMNIST

Three years ago, a 6-year-old Seattle girl called Ashley, who had severe disabilities, was, at her parents' request, given a medical treatment called "growth attenuation" to prevent her growing. She had her uterus removed, had surgery on her breasts so they would not develop and was given hormone treatment. She is now known by the nickname her parents gave her -- Pillow Angel.

The case of Ashley hit the media in January after publication of an article in a medical journal about her treatment. It reappeared in the news recently because of the admission by Children's Hospital and Regional Medical Center that the procedures its doctors had performed to stop Ashley from growing and reaching sexual maturity violated state law. In Canada (as in Australia), a child can be sterilized only with the consent of a court.

At the time of the initial publicity about growth attenuation, Ashley's parents wrote on their blog: "In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."

I did live the experience. I lived it not as a parent or caregiver but as a bed-ridden growth-attenuated child. My life story is the reverse of Ashley's.

Like Ashley, I, too, have a static encephalopathy. Mine was caused by brain damage at the time of my breech birth. Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne, Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk.

Like Ashley, I have experienced growth attenuation. I may be the only person on Earth who can say, "Been there. Done that. Didn't like it. Preferred to grow."

Unlike Ashley, my growth was "attenuated" not by medical intervention but by medical neglect. My growth stopped because I was starved. St. Nicholas offered little food and little time to eat it -- each staff member had 10 children with severe disabilities to feed in an hour. That was the roster set by the state and accepted by the medical profession. Consequently my growth stopped shortly after admission. When I turned 18, I weighed only 35 pounds. I hadn't developed breasts or menstruated. I was 42 inches tall.

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years.

In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value.

After I left the institution, an X-ray showed that I had a bone age of about 6, a growth delay almost unheard of in an 18-year-old in the developed world.

I was not only tiny but lacked any secondary sexual characteristics (a significant difference from people with naturally small stature). I was a legal adult, but I couldn't see over a bar, much less convince anyone to serve me a drink. I didn't see small stature as desirable.

My new doctors said that presumably I had the growth potential of a 6-year-old, so my new caregivers and I worked on increasing my size. My contribution was to eat everything I was offered. It worked. I started growing immediately, reaching a final height of 5 feet and weight of 120 pounds. That is, I grew 18 inches after the age of 18. Along the way I lost my milk teeth and reached puberty.

At the age of 19, I attended school for the first time, eventually graduating from university with majors in philosophy of science and fine arts. "Annie's Coming Out," the book about my experiences that I wrote with my teacher, was made into a movie (Best Film, Australian Film Institute Awards, 1984.)

Unlike Ashley, I'm now an ordinary height and weight -- but I don't get left out, nonetheless. Though I still can't walk, talk or feed myself, I'm an enthusiastic traveler. My size has never got in the way, though my hip flask of Bundy rum often causes alarm at airport security. I love New York for its galleries, its shops and its theaters; hearing Placido Domingo at the Met was one of the highlights of my life. Interestingly, Ashley is also reported as enjoying opera
-- maybe it goes with the turf.

Many otherwise reasonable people think that growth attenuation was an appropriate treatment for Ashley. In an Op-Ed piece in The New York Times, for example, moral philosopher Peter Singer wrote: " ... there is the issue of treating Ashley with dignity. ... But why should dignity always go together with species membership, no matter what the characteristics of the individual may be? ... Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."

Ironically, I'm a friend of Peter's, and I've discussed ethics and disability with him previously. Despite this, he obviously didn't call me to mind when he wrote about Ashley.

This may be because Ashley is described as having static encephalopathy, a rather uncommon name for a rather common condition. Static encephalopathy just means "brain damage which isn't going to get worse." It's occasionally used as a euphemism for brain damage caused by maternal intoxication, but the most common form of the condition is cerebral palsy unrelated to maternal intoxication. Ashley and I both have cerebral palsy. Ashley's doctors may have used the term static encephalopathy to avoid the outcry that would have followed if people realized that it was being suggested that girls with cerebral palsy should have surgery to stunt their growth and prevent puberty.

When Singer wrote that, "Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognizes them. She is expected to have a normal lifespan, but her mental condition will never improve," he has accepted the doctors' eyeball assessment of Ashley without asking the obvious questions. What was their assessment based on? Has Ashley ever been offered a way of showing that she knows more than a 3-month-old baby? Only someone like me who has lain in a cot year after year hoping that someone would give her a chance can know the horror of being treated as if you were totally without conscious thought.

Given that Ashley's surgery is irreversible, I can only offer sympathy to her and her parents. For her sake, I hope she does not understand what has happened to her; but I'm afraid she probably does. As one who knows what it's like to be infantilized because I was the size of a 4-year-old at age 18, I don't recommend it.

My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own.

Anne McDonald is a writer and activist for the disabled.

1:37 PM  

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