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Dave Thompson, September 25, 2005

The making of an advocate

Posted April 12, 1999
Last Update April 28, 2000

Autism - Historical Overview
Not like in the movies
Newspaper Coverage
Behavior and Intervention
Behavior as an indicator of abuse





 Autism - Historical Overview

It has been more than fifty years since the social and communication differences characteristics of autism were first described by Leo Kanner (1943):

"There is from the start an extreme autistic aloneness ... these children have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with innate physical or intellectual handicaps."

Research in the past decade has revisited Kanner's original work, and discussions about the nature of autism emphasize the complex interdependence of cognitive learning style, social understanding, language learning, and communication patterns.

Excerpted from Teaching Children with Autism, ed. Kathleen Ann Quill, Delmar Publishers, Inc., 1995
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  Not like in the movies

Kanner had originally supposed that all children with autism were fundamentally intelligent and that apparent delays in development were a direct result of the autistic condition. Sadly, this is one of the 'facts' about autism that Kanner got wrong and autistic individuals like 'Rainman' (the character in a well-known film) are very rare indeed, even within the population with autism. The majority of individuals with autism have additional learning difficulties, many of them severe.

Excerpted from Understanding and Teaching Children with Autism, Rita Jordan and Stuart Powell, John Wiley & Sons, 1995
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Newspaper Coverage

This isn't just a Massachusetts' story. You may have missed The Dallas Morning News story, for example, of March 12, 1999 reporting on an 11-year-old Arlington student, "The boy was placed in isolation after a February incident in which he suffered a broken arm while being restrained by a special education teacher."

But the Morning News has, in my opinion and observation,  an interesting pattern of covering special education issues. For example when a Mesquite special ed teacher plead guilty to assault charges of "chaired and non-verbal children" over a three year period,  The Morning News covered that on page 33. When a grand jury declined to indict a teacher charged with assaulting regular ed students, The News made that a Page 1 story.

The Hartford Courant and Cape Code Times are two newspapers in the US that haven't forsaken the honored tradition of investigative journalism as opposed to (just a possibility, you understand)  the promotion of right-wing political agendas to include the seeming glorification of a police-state mentality.
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Behavior and Intervention

"Unless the teacher is aware of the difficulties engendered by autism, behaviour may be misinterpreted as rude or lazy and the child either labeled as as having emotional and behavioural difficulties ..." Jordan & Powell, page 6.

"Unfortunately, out-of-context intervention is often standard operating procedure for dealing with children with autism. This occurs when symptoms of the disorder are viewed as discrete entities or, worse yet, as instances of willful behavior under the control of the child, rather than manifestations of an underlying perspective and orientation that is different from our own and reflective of a system compromised by neurological impairment." Twachtman in Quill book at page 134.
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 Behavior as an indicator of abuse

The Journal of the American Medical Association (JAMA) in their February 17, 1999 issue (Vol 281, No. 7) has an article entitled: "Analysis of Missed Cases of Abusive Head Trauma.

The context of the paper is stated as "Abusive head trauma (AHT) is a dangerous form of child abuse that can be difficult to diagnose in young children."

Part of the problem is that (very) young children are "preverbal". Clearly - to me anyway- MR and autistic children if not "preverbal" do have limited verbal communicative skills. Given this inability of the victim to articulate what has happened to them, the JAMA paper discusses various nonspecific symptoms, one of which is irritability.

It is my experience and belief that schools can create in disabled children through abuse and inappropriate actions ("punishment for non-compliant behavior") the very behavior for which the school then applies yet more inappropriate force. And the schools are quick to document the child's response to this inapproporiate force while ignoring the stimulus (actions of the staff) that precipated the behavior.

In other words, the schools can abuse the child, then criticize the child's "irritability" and non-compliance. To paraphrase Mark Twain, if  ethical behavior is truth, then as scarce as truth is, the supply has always exceeded the demand.
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 * Pat Buchanan left the Republican Party for the Reform Party in November 1999. At the time he made the referenced comment, he was a Republican (DLT - 12/6/1999)




























 Thousands of starfish had washed ashore.
A little girl began throwing them in the water so they wouldn't die.
"Don't bother, dear" her mother said,
                      "it won't really make any difference."
The girl stopped for a moment and looked at the starfish in her hand.

       "It will make a difference to this one."

(With permission from  Domini Social Investments)


The Symptoms

It was the start of a new school year and Abbie, a 10-year-old autistic child, was coming home from school with rug burns and bruises from public school. Her behavior at home had changed since the start of the school year. What had happened?

Abbie was in a self-contained classroom, the institutions that public schools in America have created for MR (mentally retarded) and autistic children. Actually, I have found schools go beyond this and - in many cases - place any child with any type of intellectual impairment in these institutions within the walls of public schools.

In an attempt to understand Abbie's change in behavior, the doctor to whom Abbie and her mom, Jean Bowden, had been referred suggested that Jean "have them [the school] make a video of what goes on in the classroom."

This video, along with some still shots taken from the video, became the impetus for the Cape Cod Times story, "A question of restraint" by Cynthia McCormick, a staff writer for the Times.
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The Story

On Sunday, March 21, 1999, the Cape Code Times ran Ms. McCormick's story, "A question of restraint: Parents and educators battle over methods used to control autistic children". The story details events on the videotape of Jean Bowden's daughter, Abbie, and Melanie Lyon's son, Matthew. The story leads with:

Melanie Lyon figured Barnstable public schools had special strategies to teach her son Matthew, who has autism and can barely speak.

When she found out that included pushing him face-down on the floor, pressing his hands against his back and straddling him, her confidence turned to outrage.

Ms. Lyon's is quoted in the article as saying (about the videotape), "... the teacher looked right at the camera and said if he's 'noncompliant for five minutes, we're going into a floor restraint'."

Ms. Bowden notes that the videotape shows her daughter "Abbie being restrained 14 times in one day. 'Pressing her down on the floor with her arms up behind has back like a take-down in a drug bust."
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19th Century Attitudes: Force will make you whole

In an astonishing display of ignorance and reactionary thinking, "educators" in this country, supported by the current political climate of "compassionate conservatives" are turning the issue of disabled children with medically diagnosed conditions and congenital birth defects into a "discipline issue". These "educators" seem to believe that force will make you whole.

Want to know the attitudes of the State of Texas and Texas' teachers? We have some indications already from the due process hearing results. But a recent letter (3/28/1999) to the editor by a former teacher shows the depth of the hostility held by educators towards disabled children in Texas schools:

" A revision of the Individuals With Disabilities Education Act now will allow schools to discipline special education students the same way they discipline nondisabled students. That is bound to cause an uproar among parents of disabled children who, on one hand, want their youngsters treated like any others when it comes to academics but who routinely use disability as an excuse for why the children shouldn't be held accountable for misbehavior."

That ought to do it. If your autistic or MR child doesn't follow instructions, then throw them to floor or lock them in a box. That should hold a disabled child "accountable for misbehavior." Yep
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Thoughts on the Cape Code Times' article

Ms. McCormick should be congratulated for a well researched and written piece on this important topic. Sadly, it seems that animals and trees and snail darter fish are afforded more rights in our society than disabled children.

In short, these children are being abused and even assaulted based on the child's very disability. These children behave NORMALLY, for who they are. While the knowledge exists among professionals throughout not only the United States, but in Canada and the UK as well, - in spite of this, public schools in America too often apply force against these children as if "force shall make you whole." It is barbaric and a national disgrace.

Schools appear, or so it seems to parents of disabled children, to be above the law. Public school systems wrap themselves in the - entirely for the most part accurate - caring and professional reputation of teachers in general in our society. Yet the very same schools refuse to deal with excessive force against disabled children and to remove, forthwith, staff members totally unsuited to work with disabled children.

As a society we are able to comprehend that if an individual member transgresses the law, then we deal with that person. Considering schools, the prevailing attitude seems to be that "all teachers are good and decent." The operative word is "all." No clear thinking person would accept this as a reasonable view of the world, let alone schools.

The dichotomy between behavioral research and teaching strategies that exists in some university programs regarding educating disabled children and what occurs in public schools is stark, even outrageous, and certainly dangerous to the children. Newspaper articles about university research in educating MR and autistic children is pure window dressing when the reality in the schools does not follow, or even represent some intelligible representation of the best known practices.

While accepting the basic decent character of the American people, I find that ignorance rules the day regarding disabled children. We all, it seems, can understand (comprehend and relate to) physical disabilities, yet understanding  escapes most of us when the child is intellectually impaired through disease or injury. The application of force against these children is no less outrageous than it would be if I gave you orders in some unknown foreign language and then summarily and aggressively punished you for "non-compliance."

The majority of parents of disabled children want desperately to keep their families together. The promise of federal legislation originally signed into law by President Ford in 1975 was that our children would attend local, neighborhood schools, and be included - to the maximum extent possible - with regular ed children.

This has been adulterated by the schools and the national lobbying efforts of the National School Board Association,  Council of School Attorneys, to the point that our children are institutionalized within the very walls of public school. The children are confined in so-called "self-contained" classrooms, sometimes for the entire school day. Behind these closed doors exists - in too many cases - the same institutional environment and abuses so thoroughly document by the Eric Weiss series in the Hartford Courant. In short, our children are institutionalized.

Worse, while state governments and politicians can be goaded or embarrassed into acting against private institutions, the public schools in many - not all, but many - cases are exempted from examination and reform and even the consequences of criminal behavior by school staff.

The ultimate truth, in my opinion, of the Weiss series was that violence against disabled persons in general, and disabled children in particular, is consequentless, gratuitous violence. It is pure mean-spirited aggression, bordering upon, and oftentimes exceeding, barbarism. Consequentless to the perpetrators, that is. The facts show that our children are the victims, sometimes fatally so.

It is astonishing to me to listen as a national debate rages over the rights, or non-rights, of the unborn. I find that both compassionate conservatives and humanistic liberals rail about the unborn, yet no one speaks for the born. Our children are persons, no less than you or I. They should be afforded dignity and respect for their humanism, and not devalued, demeaned, and abused by individuals and institutions alike.

Why do we  read about children dying in institutions but not in public schools? In my opinion, for one reason, and one reason only:  The children have to go home at the end of the school day. Parents, such as Jean Bowden and Melanie Lyon will notice the bruises and rug burns on their children; they will note the change in the child's behavior; and they will take action.

And, until we - as a society - wake up and renounce the systemic abuse of disabled children, it will continue. As long as teachers and educators spend their time keeping records such as "140 attempted aggressions in one day", so long as teachers and educators throw children to floor, spray alcohol in their faces (Mesquite, Texas), so long as those acting under the color of the state can count on the protection of the state to characterize their outrageous treatment of disabled children as that of "a caring, professional teacher of disabled children" (George West ISD, Texas), it will continue.
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Predictable response to Cape Code Times piece

Schools are held exempt from the standards we apply to every other institution in our society. We can criticize the Pentagon, and not consider that an attack on our citizen-soldiers, recognizing it to be a matter of holding leadership accountable.

We criticize our politicians, without taking that to mean an attack on the individual citizens in the politician's home district. We criticize and hold accountable the mayor, without stigmatizing the population of an entire city. Most thinking persons can even bring themselves to condemn police brutality, without labeling "all police" as bad.

Ah, but to criticize the schools. Now that's another story. Schools, or so it seems in most media, are staffed only with educators. I've never met an educator. I've met teachers, staff, administrators, but never an educator. The media use of the word "educators" strikes me like the use of the word "patriot". After all, who could criticize a patriot; that would be un-patriotic.

Here is the lead from one letter-to-editor after the Restraint article ran: "I have been reading your paper for over 20 years and have read what I sometimes thought was good journalism and at times was angered at how a certain topic was covered. After reading the March 21 front page article, I can no longer keep my opinion to myself. I couldn't help but feel the paper had touched a bit on National Enquirer journalism tactics."

Jean Bowden (Abbie's mom) also wrote a letter-to-editor and stated in part:

"I want to thank you for your article, "A question of restraint," calling attention to the issue of training of those in public schools and proposed regulations in the state of Massachusetts.
The focus since then, by certain individuals, is not on the dangers of restraint used by untrained, unregulated persons, but that I am a disgruntled parent trying to get even with a classroom teacher.
First of all, I had the utmost confidence in this program until I was given a video showing my child being floor restrained excessively over and over again. As a loving parent, this was extremely traumatic and upsetting to me. This was coupled with reports of children dying from this, reports from experts questioning the use of restraints, multiple bills filed to regulate (not prohibit) restraints, and finding out that restraint training is mandatory in other areas such as the Department of Mental Retardation. I felt this needed to be addressed."
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The making of an advocate

Jean Bowden will be be offering testimony in the Massachusetts legislature regarding the use of restraints by schools and institutions (Cape Cod Times article on Bowden testimony). She has lobbied the office of Senator Ted Kennedy regarding possible federal action to curtail or eliminate the use of restraints against disabled children. She has learned fast about how things work and is working to make things different.

As parents we need to follow her example. We need to understand that we are in a battle with those who would embrace the attitudes of the 19th Century, and do so with zeal and feigned righteousness under the guise of school discipline and compassionate conservatism.

You know, Pat Buchanan, a voice of the Right from the Republican Party is known for - among other things of course - as the author of the quote, "We need to take this country back!"*

I used to wonder, "Take this country back from who? From what?" We are the country.

But you know, we should take this country back. Not as Mr. Buchanan might propose, but in fact back from the reactionary agenda that seems wont to drive us not towards the 21st century, but return us to the attitudes and actions of the 19th Century. We should take this country back:  back from selfishness, back from elitism, back from attacks on the diversity that has made us great.

Our disabled children are what they are. Given an awakening to what is good and decent in the American character, we can change things. We can make it known that the abuse and deaths of disabled children and disabled persons at the hands of institutionalized violence and abuse is not acceptable. It's not acceptable in private institutions as detailed by the Weiss series, and it is not acceptable in our public schools as discussed by the McCormick piece.

Dave Thompson - April 12, 1999
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Massachusetts Amendment on Restraints

  Amendment 861

Section 37G  of chapter 71 of the General Laws, as so appearing in  the 1998 Official Edition, is hereby amended by adding, at the end of section (b), the following section :   

(c) A student may be physically  restrained only as a last resort and only in an emergency when the student poses a clear and immediate physical danger to his or herself or to others;  no school personnel may administer any form of restraint on any student unless they have completed a formal training course approved by the Department (after consultation with the Departments of Mental Retardation, Mental Health, Youth Services, Social Services, Public Health and Office of Child Care Services) on the use of restraints, however, this provision shall not preclude any teacher or any employee or agent of the school  from using reasonable force to protect pupils, other persons and themselves from an assault by a pupil as set forth above in section (b); forms of restraint which pose an unreasonable risk of harm, such as prone floor restraints, are expressly prohibited;  all use of restraint shall be reported on a form prescribed by the Department, which shall be provided to the student (if age 14 or over) and to the student's parent within twenty -four hours of the incident, and reported to the Department within 30 days of the incident

Thanks to Jean Bowden for sending this along. Jean advocated for this amendment in her state of Massachusetts. 

Dave Thompson - April 28, 2000
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