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IN DEFENSE OF BEHAVIROAL TREATMENT FOR AUTISM

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  • Lenny Schafer
    SCHAFER AUTISM REPORT Healing Autism: No Finer a Cause on the Planet ________________________________________________________________ Monday,
    Message 1 of 1 , Apr 27 9:10 AM
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      SCHAFER AUTISM REPORT "Healing Autism:
      No Finer a Cause on the Planet"
      ________________________________________________________________
      Monday, April 12, 2004 Vol. 8 No. 62


      >> PROMOTE YOUR MEETING, WORKSHOP OR CONFERENCE [DEADLINE April 25]
      List your event in The Autism Calendar free:
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      SPECIAL EDITION:
      IN DEFENSE OF BEHAVIORAL TREATMENT FOR AUTISM
      Why autism should not be left to fester untreated as some opponents argue.

      * Behavioral Flowers for Algernon
      By Bobby Newman

      * This Taken Seriously By The Court In Canada Is An Outrage
      By James A. Mulick, Ph.D.

      * Mischaracterizing the “Misbehaviour of Behaviourists”
      By Gary Mayerson

      * Whose Misbehavior?
      By Gina Green, PhD, BCBA

      * Who Speaks for Our Children?
      By Jennie Ladew-Duncan

      * One Small Boy Goes From A Diagnosis Of Autism To Advocating
      For Kids Rights To Treatment
      By Anthony and Cindy

      * Letter from: AnthoNy


      IN DEFENSE OF BEHAVIORAL TREATMENT FOR AUTISM
      Or should autism be left to fester untreated?


      Applied Behavioral Analysis is a proven effective treatment for
      autism. Yet, as its popularity has grown amongst parents, teachers and
      disability agencies, so has a small, but growing-louder voice of those who
      see any treatment for autism as inhumane, especially ABA.
      Recently there have been a few public critiques leveled at those who
      provide behavioural treatment to children with autism by this “pro-fester”
      camp. The title of one piece is, The Misbehaviour Of Behaviourists: Ethical
      Challenges to the Autism-ABA Industry, by Michelle Dawson states, “Since the
      publication of O. Ivar Lovaas' landmark 1987 study, scientific and legal
      attention has been lavished on Applied Behaviour Analysis as an autism
      treatment. Dr Lovaas' supporters and opponents, whether principled or
      opportunist, have been loud, plentiful, prolific, and well-credentialed. But
      when it comes to the test of ethics, to allotting autistics rudimentary
      ethical consideration, all sides and factions for and against ABA have
      persistently and thoroughly failed.” See
      http://www.sentex.net/~nexus23/naa_aba.html for the full text.
      Due to these types of serious allegations, and that the courts are
      adjudicating on these very issues, we have invited professionals in the
      field, and some parents to respond to this article and its arguments.
      * * *

      Behavioral Flowers for Algernon

      By Bobby Newman, who has been active as a board member of autism and
      behavior analysis organizations and has served as a board or committee
      member of a number of international, national, and regional professional and
      scientific groups. Dr. Newman is the author of The Autistic-Spectrum
      Disorders and the Ethics of Helping People Revisited.

      In an under-appreciated article from the 1970’s, B. F. Skinner (1976)
      discussed “The Ethics of Helping People.” Reducing the discussion to its
      barest bones, there are three options available to us when considering
      people who are lacking particular skills. We can: Take care of the
      individual by performing skills for them and protecting them from demands.
      We can attempt to ameliorate the skill deficit by teaching the skill
      to the individual.
      We can attempt to circumvent the problem through adaptive technology.
      To put this line of discussion into concrete terms, let us assume that
      a child cannot tie his/her shoes. We have three options: We can tie the
      shoes for the child.
      We can help him/her to learn to tie the shoes.
      We can create some kind of technology to eliminate the need for
      shoe-tying (e.g., Velcro fastening shoes).
      Moving the discussion into a different area, what if a person’s skill
      deficits were so diverse that (s)he was unable to independently function in
      everyday society? We would be left with two of our three by-now familiar
      options: We can provide 24 hour assistance to help the individual through
      troubling areas.
      We can help him/her to develop the skills to live independently.
      Note that I do not include the third option of technological defeat of
      the deficits. This is merely a pragmatic alteration. We are now talking
      about such a global group of delays that it is not practical at our current
      stage of knowledge to use adaptive technology to eliminate the deficits in a
      single effort. Such a medical operation, for example, is still largely the
      realm of speculative fiction (e.g., Flowers for Algernon). Perhaps one day
      this will become an option, medical intervention will become available. To
      cite one historical example, this was indeed the case when cochlear implant
      technology advanced sufficiently to address some types of auditory
      disabilities.
      In citing this historical example, we bring ourselves into contact
      with a discussion we have not yet considered. What if the individual under
      consideration does not want our assistance? Within the deaf subculture, for
      example, there are some individuals who believe that deafness is part of
      their identity and not a disability. They would not voluntarily undergo the
      operations that might restore their hearing. A similar discussion has begun
      among some individuals advocating for individuals diagnosed with
      autistic-spectrum disorders.
      The autistic-spectrum disorders are a group of neurologically-based
      syndromes that generally affect an individual’s behavior range, as well as
      socialization and communication skills. Within the autistic-spectrum, there
      is an enormous functioning range. Without an appreciation of this simple
      fact, discussing the autistic-spectrum disorders is impossible. It no more
      makes sense to talk about a generic “person diagnosed with autism” than it
      makes sense to speak of a generic “religious person.” If I told you that
      someone was religious, but gave you no additional information, what would
      you know of the person? What would you know of their worship practices?
      Their dietary habits? Their holiday celebrations? Naturally, you would
      know nothing. Suppose now that I told you that a person was “autistic.”
      What do you know? Can the person speak? How fluently and how abstractly?
      Does the person have the ability to socially initiate to others, or to
      accept initiations? Is the person unduly affected by stimuli that people
      within the population at large generally ignore? Does the person exhibit
      excessive ritualistic or perseverative behavior? People diagnosed with
      autism range from some individuals who may be able to function independently
      within society (at least in some areas) right through those who will not
      learn to communicate, follow simple requests, tolerate the proximity of
      others without self-injury, or even to toilet independently without
      intensive help. The discussion of whether or not to attempt to ameliorate
      the behavioral excesses and deficits associated with the autistic-spectrum
      requires an appreciation of this simple fact. Without intensive
      intervention, many individuals diagnosed with autism will eventually wind up
      in institutions, unable to even feed or toilet themselves independently. To
      avoid providing this intervention, all the while assuring the individual
      that we are doing this in his/her own best interests, “respecting dignity
      and individuality,” strikes me as a bit hollow.
      Suppose you were the individual who, without treatment, was destined
      to be standing alone in a corner of an institution, dependent on everyone
      around you to take care of even your most basic needs, rocking
      perseveratively and eliminating in your clothing, unable to sample what life
      has to offer. Would you like someone who could speak and could interact in
      the everyday world speaking on your behalf and counseling against treatment?
      No, I wouldn’t either.
      Reference: Skinner, B. F. (1976). The ethics of helping people. The
      Humanist, 36(1), 7-11.





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      * * *

      This Taken Seriously By The Court In Canada Is An Outrage


      Dr Mulick, is currently a Professor in the Departments of Pediatrics
      and Psychology at The Ohio State University, Columbus. Professor Mulick
      has published over 100 articles, chapters and books in the areas of
      learning, developmental psychobiology, behavior analysis, mental retardation
      and developmental disabilities, policy analysis, and curriculum development
      for advanced and postdoctoral professional education.

      This is a reaction [email messaged from Dawson supporters
      characterized by hate and personal attacks] that true believers of any
      persuasion are likely to do. They are outraged by logic and free debate.
      As for Ms. Michelle Dawson's “Misbehavour of Behaviourists”, as the
      article itself indicates, she spoke with me several times. She presented
      herself to me as an “autistic journalist” (an oxymoron, if taken seriously,
      because autistic people would not, by definition, be interested in a career
      in communication!) and a self-appointed expert on the “autistic perspective
      on life”. People who have had difficulties making a living are not
      considered experts in economics. People who have psychiatric disorders are
      not considered experts in psychiatry. Why is this? This is because learned
      fields are not, we should hope, be based on idiosyncratic experiences and
      personal biases alone, but rather on a demonstration of acquired knowledge
      and on experience of effectively working in the learned discipline.
      Fortunately, I myself rate only a small mention in Ms. Dawson's
      posting, despite several conversations with her in which I tried to answer
      her questions. [When I have time, I do this with people who have general
      inquiries]. She was always interesting and amusing, a good
      conversationalist. She showed sensitivity to my point of view and was a very
      active listener. When she spoke, she offered clarifications if I had
      questions about her meaning. She told me she wanted to enter in to a
      Canadian legal case as an expert in autism, based on her own experience as
      an affected person and on her perspective as a journalist who had
      interviewed professionals who were considered experts in autism. Do you get
      the picture? She was behaving like a well trained journalist who had decided
      to become a part of the news she was gathering. These are arguably
      characteristics of a person with a psychiatric disorder, but that disorder
      is not autism or even “on the spectrum”. In popular terms, she impressed me
      as a person who had managed to convince someone in her government that she
      had a disability, and who lived off that status, but the disability she did
      have had perhaps been mislabeled. Malingering comes to mind. Personality
      disorder comes to mind. In fact, there appear to be a number of individuals
      who travel with the autism community as experts based on their status as
      people who had and overcame the disorder, even as they live off that status
      in the public eye; even as they behaved in ways that a person with autism
      would never choose to do (seek public speaking opportunities, seek
      recognition, constantly communicate, etc.). Remember that autism is a
      disorder that is characterized by particular ways of behaving.
      I was mentioned in the article Dawson posted as having said that
      autistic characteristics were a “hilarious accident”. This bit of gratuitous
      out-of-context quoting shows her intention was merely to denigrate the
      people she interviewed, not to create a helpful debate.
      This is shown by the fact that she did quote out of context. I will
      tell you the context. She asked me about the cardinal symptoms of autism,
      and about the impact of the disorder on affected people. I tried to explain
      to her in everyday language that the disorder's defining characteristics
      were still in flux.
      To illustrate this, I suggested that the people described in Kanner's
      original paper shared characteristics he described and that he noticed, but
      that the few individuals and their prominent commonalities represented not a
      complete picture, but were grouped together by Kanner's individual
      perception and the accidental cluster that he thought Made Them All The
      Same.
      I was not saying that it was a joke to have autism or trivializing
      autism, far from it, I was emphasizing that other aspects than those first
      emphasized have come and gone as diagnostic markers, defining
      characteristics. I think as well that a system of psychiatric classification
      based mostly on behavior is a poor way to classify mental illness in general
      and the PDDs in particular. We will make progress understanding disorders of
      learning and development when we understand and classify based on causes
      (not on effects), but unfortunately such a system is not yet a reality and
      will not be a reality for several decades (at least that's what I think).
      * * *

      Mischaracterizing the “Misbehaviour of Behaviourists”

      By Gary Mayerson, a special education attorney who practices in the New York
      area.

      To the extent, if at all, that Michelle Dawson has a genuine
      diagnosis on the autism spectrum, it is unfortunate that she has chosen to
      denigrate the singular intervention approach (Applied Behavior Analysis
      intervention) that (a) enjoys good scientific support (b)has been proven to
      remediate the devastating impact of autism, and (c) now has a compelling
      history of helping to movie significant percentages of children with autism
      spectrum disorders into less restrictive educational settings. It is even
      more unfortunate that anyone would take Ms. Dawson seriously.
      My law practice, Mayerson & Associates, is dedicated virtually 100%
      to the representation of children and adolescents with autism spectrum
      disorders. I left a very lucrative law partnership in Manhattan (after 13
      years as a partner) in order to start my law practice. I took this risk
      because I saw the incredible progress that my own son had (primarily with
      ABA interventions), and I wanted to make sure that these kinds of effective
      interventions would not be denied to parents who did not have the same kinds
      of financial and other resources that I had.
      To date, we have represented hundreds of children and adolescents
      with autism in more than 25 states. We also have consulted to families
      internationally. Like my son, many of our clients have been able to move
      into and succeed in mainstream, public school settings, many times with
      little or no support. Some of our clients have even been “declassified.”
      Most of our other families fall somewhere in the middle, and ABA offers the
      support system that the child needs to move into a less restrictive setting.
      We have never had a client who recovered significant function after an
      autism diagnosis who did NOT at least initially have an intensive ABA
      program as part of his or her intervention program. Before ABA, this kind of
      result was impossible. Before the advent of ABA programs, the diagnosis of
      autism was akin to a death sentence of sorts, with institutionalization the
      likely outcome for many, if not most of these children. Initially, ABA
      provides very close structure. Later on, as the child learns to learn and
      is starting to “generalize” skills, the ABA program moves on to become more
      natural, with greater emphasis on incidental teaching, fluency. ABA, when
      done correctly, is not simply hours and hours of rote “drills.” This is a
      popular misconception. ABA does not constitute child abuse, as Ms. Dawson
      charges. The approach is not that different from the approach that a doctor
      would take to remediate the effects of a stroke or other neurological
      incident. Of course it is hard to re-learn how to walk, talk and eat again.
      The autism disorder is a workaholic that does not know how to take a break.
      For this reason, only an equally intensive remediation program has a chance
      to compete with the devastating impact of autism.
      If there is anything that is “unethical” or “immoral” it is Ms.
      Dawson promoting the idea that society should simply “accept” children with
      autism for what they are and just “go with” the autism. If I am two years
      old and I cannot hear, I don't want someone like Ms. Dawson making the
      decision for me that I should not have a cochlear implant so that I can
      remediate my disability and enter and meaningfully live in the world of
      those who can hear. If a parent neglects their child and fails to take
      action to remediate their needs, THAT is child abuse. It is love, not child
      abuse, when parents do their due diligence and research, and rely upon the
      recommendations of reknowned professionals to provide their children with
      effective autism treatments.
      I thank god that there was ABA treatment available when my son was
      first diagnosed. There is no end to my love for my son, but there also is
      no end to my belief that autism is a serious and devastating disorder that
      will continue to destroy lives and families if not remediated to some
      meaningful level. Without ABA, my son would still be rocking,
      perseverating, and not speaking. Without ABA, my son would never have been
      able to succeed in a mainstream public school setting. Without ABA, my son
      would never have been able to learn the communication and social skills that
      now help him to navigate play dates and “sleepovers,” little league
      baseball, soccer, and Sunday school. At some point, parents of children
      with autism will come to terms with the limits of their own child's
      remediation track. Not every child with autism will “recover” or become
      indistinguishable from typically developed children. All parents of children
      with autism love their children fiercely. If only just loving these
      children could remediate autism, there would be no children with autism.
      Autism is no more a “culture” to be preserved and protected any more than
      lung cancer or a brain tumor. Ms. Dawson is entitled to her own opinion,
      but she is not entitled to her own facts. Autism is a serious disorder and
      disability. Unless properly treated, it literally robs families of their
      children, and it robs those same children of the opportunity that they might
      have had to be functioning and contributing members of society.
      * * *

      Whose Misbehavior?

      By Gina Green, PhD, BCBA San Diego, CA. Gina Green is a well-known
      clinical expert in behavioralism as it is applied for treatment for autism.
      Dr. Green co-edited the books Behavioral Intervention for Young Children
      with Autism and Making a Difference: Behavioral Intervention for Autism. She
      is currently in private practice in San Diego, California.

      As evidence of the effectiveness of applied behavior analysis (ABA)
      methods for building many important skills in individuals with autism has
      mounted, along with efforts to make intensive ABA intervention more widely
      available for families who choose it, so has opposition to intensive ABA for
      autism grown. Opponents use a variety of tactics to denigrate the approach
      and its extensive supporting research. Many of those tactics rely heavily on
      personal opinions and beliefs; there is a surprising disregard for facts.
      For example, some assert that because ABA is “new” and “experimental,” its
      effects and how it works are not well understood.
      The facts are that the parent science, the experimental analysis of
      behavior, has been around for more than 50 years; the first applications of
      positive reinforcement and other behavior analytic methods to skill-building
      with children with autism were published in the early 1960s; and hundreds of
      empirical demonstrations of the effectiveness of various ABA methods for
      enhancing the health, safety, independence, and success of people with
      autism of all ages have been published since then.
      It is nonetheless probably fair to say that the wide variety of
      precise, often intricate ABA techniques and their underlying principles are
      indeed not well-understood by those who are not adequately trained in
      behavior analysis, just as it is likely the case that most medical
      techniques are not truly understood by any except those who are thoroughly
      trained in medicine, or most speech and language therapy techniques are not
      well-understood except by those who are specifically trained in them. But
      ABA techniques and principles are well-understood by well-trained behavior
      analysts.
      The challenge is to find bona fide behavior analysts, as opposed to
      the many individuals who took a course or two on “behavior modification”
      years ago, or heard it mentioned in an introductory psychology or special
      education class, or read a book, or attended a workshop, or claim to have
      worked in a “Lovaas program.” (Contrary to recent assertions that there are
      “droves” of behavior analysts involved in the ABA-autism “industry,” the
      fact is that genuine behavior analysis is a small – albeit a growing –
      discipline).


      “Curiously, one tactic that opponents of intensive
      ABA for autism have not employed is production of objective
      evidence, from either between-group or within-participant
      studies, that intensive ABA is ineffective or that another
      intervention is comparably or more effective.”


      Other opponents of intensive ABA opine that only studies that involve
      random assignment of participants to treatment and control groups and
      statistical analyses of between-group average scores on standardized tests
      constitute scientific research. Since few studies of intensive ABA
      intervention for autism have those characteristics, they argue, there really
      is little scientific support for ABA. But there is more than one way to do
      science. The fact is that behavior analytic research methods – emphasizing
      within-participant research designs, repeated direct measurement of
      individual behavior over time, demonstrations of direct relations between
      interventions and changes in participants, and effects that are clinically
      rather than statistically significant – parallel methods that have a
      venerated history in the natural sciences. Curiously, one tactic that
      opponents of intensive ABA for autism have not employed is production of
      objective evidence, from either between-group or within-participant studies,
      that intensive ABA is ineffective or that another intervention is comparably
      or more effective.
      Recently, some opponents of ABA for autism have adopted a different
      strategy. They assert that it is “unethical,” even “inhumane,” to provide or
      seek intensive ABA intervention for children with autism. Embedded within
      some presentations of this position are countless inaccuracies and
      statements that are unsupported by facts: for example, assertions that
      behavior analysts view autism as incompatible with achievement,
      intelligence, and learning (in fact, the opposite is true); implications
      that ABA always involves “aversives;” statements that behavior analysts do
      not believe that some people on the autism spectrum have high levels of
      intelligence and verbal skills; assertions that behavior analysts do not
      seek proper consent for treatment and have never dealt with ethical issues
      (again, the opposite is true, as even a cursory objective review of the
      field would reveal); and too many others to mention here.
      But the main tenet of this position seems to be that it is wrong to
      try to change anyone in any way; rather all “differences” should somehow be
      “accommodated” by society. On the surface it seems difficult to find fault
      with that tenet, but follow it to its logical conclusions: All educational
      efforts should be banned as unethical, because after all, they seek to
      change people.
      Likewise, all those who have medical, neurological, developmental, or
      behavioral difficulties must be “accommodated” as “different” rather than
      having any sort of treatment imposed on them, even if legal consent is
      obtained (that is, it’s not just intensive ABA treatment for autism that is
      “inhumane” by this logic, but all treatments). Society should accept
      behaviors that are now considered illegal because they are merely
      expressions of “differences.” And so on.
      If it is true, as some have claimed, that there are scores of adult
      “autistics” (their word, not mine) who are doing just fine without any
      intervention whatsoever, that’s terrific. In my opinion, they should remain
      free to choose to seek intervention or not, and to seek greater acceptance
      by the broader society. But they should not be allowed to say what sorts of
      interventions should or should not be available to other people with autism
      or their families, any more than individuals who have medical conditions
      should be allowed to dictate what others with those conditions can do.
      Intensive ABA -- a demonstrably effective intervention for children with
      autism when it is competently delivered – should be available for families
      who freely choose it. Imposing the “accommodation and support” ideology on
      all people with autism and their families would amount to prohibiting those
      who want and consent to effective treatment from obtaining it. What could be
      more unethical and inhumane?
      * * *

      Who Speaks for Our Children?

      By Jennie Ladew-Duncan, the mother of an autistic son, who lives in
      Roslindale, MA.

      Nearly seventeen years ago my only son was born with all five fingers,
      all five toes and a beautiful disposition. We waited his birth with
      anticipation, welcomed him in to our lives. His arrival was met with joy and
      happy expectation! At first he developed well; then hit the first plateau,
      made nice strides and fell back, out of step, straggling behind. Over the
      years he has continued to take two steps back, one step forward, a dance
      that we weren't familiar with. Clearly my son had a choreography all his
      own. Isaac was diagnosed with autism at age three and a half, and we learned
      to dance along.
      However, living with a child with significant autism is not just about
      dancing. His father and I have done our best to balance his needs and ours.
      We have often felt as if we're spinning out of control. We can only imagine
      how he feels. We've done our best to provide him with a safe haven when he
      is overwhelmed by the every day world.


      “Unless you have assumed responsibility for such
      a child or children with autism and have not only had
      to judge what's best for your beloved son or daughter,
      but juggle a marriage, siblings, careers, being a friend
      and a family member, then you do not represent these children.”


      Life is a painful process. We can't always ignore this reality.
      Helping our children with autism is about teaching them about life, coping
      and managing more independently, with confidence. Without adequate
      treatment, assistance and funding Isaac's life would more accurately
      resemble a hapless dancer in a “mosh pit” instead of a graceful, strong,
      capable young man who owns the stage.
      There are people who hastily judge the advocacy and efforts of
      parents. Some “self diagnosed” person's with autism claim to represent a
      united front. They say they speak for the children with autism. They protest
      and object to “changing” the child. They claim providing individualized
      programming based on ABA is wrong.
      I’m left reeling. How dare they make assumptions about our intentions!
      It is beyond me.
      Unless you have assumed responsibility for such a child or children
      with autism and have not only had to judge what's best for your beloved son
      or daughter, but juggle a marriage, siblings, careers, being a friend and a
      family member then you do not represent these children.
      To allow a child to remain ill at ease with the world, isolated from
      his or her family, to deny that young person every opportunity would be
      criminal. In any other case neglecting a child's needs would be considered
      irresponsible, even illegal.
      Parents using Applied Behavior Analysis and other approved, research
      based interventions hope to remediate and restore skills. These mothers and
      fathers are often some of the most invested, dedicated parents I have ever
      known. I would never presume to know what is best for each individual, but
      surely assisting a young person to better cope and communicate is a true
      gift.
      Every time a child can make a safe choice and make a friend or to
      decide they'd like to be alone, to constructively do so, to enjoy their
      food, to converse, celebrate holidays, travel, participate without
      discomfort, etc., we have done our duty as a parent. To love does not mean
      to necessarily do what is easy. To love means to guide, facilitate, assist,
      comfort, aid and protect.
      Loving somebody with autism is to love somebody who presents numerous
      challenges. It means remaining available, open minded and appreciative every
      single day.
      I appreciate every effort my son has ever made. I appreciate every
      effort he will ever make. I admire him, and I think he is a brave and
      beautiful soul. This does not mean I believe I should let him remain
      significantly impaired, or that it's alright for him to struggle under the
      mantle of autism all his days.
      It is of great sorrow to me that he was the beneficiary of such poor
      early intervention and that intensive behavioral intervention came so late.
      But, he has benefited and in spite of the long dry spell, he is better
      off now than he would have been left alone. Better off compared to how he
      was when he received a special education that did not address his needs, but
      accepted his label as if it were a definition of who he was and all he ever
      would be. My son is not autism. He is a lovely young man. Sadly he will be
      handicapped for the rest of his life. To accept the child is not the same as
      accepting the autism. Apathy is not appropriate. Action is! It is up to me,
      his mother to help ease his distress, to carry some of his burden! And it is
      up to me to push and prod him on his way, because growing up his hard. It is
      all the harder when the child finds so many daily activities difficult.
      We need assistance from our governments. Parents can not do this job
      alone. But we must be allowed to be families, and to assume our
      responsibility with the respect and regard we deserve. To assume that anyone
      else can know our situation and how best to address our child's strengths
      and deficits is demeaning.
      I salute the many people who work on behalf of our children, who apply
      the best science, who are warm, honest and who commit themselves and their
      careers to helping us help our loved ones.
      I do not understand why any organization or agency does not understand
      that time is of the essence for optimum progress, but at the same time
      refuses to recognize that we all learn every single day, so that none of us
      make the mistake of limiting the intervention our loved ones so richly
      deserve.
      We do not stagnate and stop learning. There are subjects and tasks I
      find daunting, and still I try. I would hope I will continue to support my
      son in spite of how daunting it may be. I continue to hope we will be open
      to how far our children can go with intensive behavioral intervention at all
      stages of their development.
      Not every outcome is the same, but every child who has the opportunity
      to receive the most appropriate services will benefit. To deny the children
      their best chance is to essentially promise them a life of dependency and
      deprivation. Surely they deserve more? Jennie Ladew-Dunca
      N



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      * * *

      One Small Boy Goes From A Diagnosis Of Autism To Advocating For Kids Rights
      To Treatment

      By Anthony and Cindy F.

      This is the story of my son who is one of the child plaintiffs in the
      Wynberg vs. Ontario lawsuit. It’s about his journey with autism and his
      progress with ABA treatment. His journey takes him from being a child who
      was completely disconnected and unaware of his surroundings to a small boy
      on a mission to ensure other children with autism have the same chance to
      get well with treatment just like he is doing.
      At the time of his diagnosis when he was three the psychological
      assessment placed him developmentally at a one year two month level with
      essentially no speech, today he is nine and is charging into the world of
      advocacy to tell the people in charge that he still needs his therapists and
      so do his friends. He wrote a letter to the government and testified in
      court because he wanted to speak for himself, he hoped that if they listened
      to a kid who has been in treatment and has gotten better that they’d
      understand that they just can’t take away their teachers when they turn six…
      He said to me, “I still had a lot of autism when I was six, if I lost my
      teachers then I would still have a lot of autism to deal with… that’s mean
      of them Mom! They just can’t do that to kids, I have to tell them. If I
      talk to them they will have to see and then they’ll fix it”.
      To share what lead to him writing his letter and later wanting to
      testify … He has been in a home-based ABA program since he was 3-1/2. When
      he entered kindergarten he was extraordinarily fortunate to have a principal
      that believed in him and supported his acquired learning style and allowed
      one of his ABA therapists to shadow him in the classroom fulltime. In grade
      one with the school boards approval this continued. On entering grade 2 at
      the age of 8, because he had received appropriate support he no longer
      needed the fulltime support in class anymore, though we continued to work
      within his home ABA program to fill the gaps in his social skills. One of
      his friends was a little boy that had lost funding for treatment on his
      sixth birthday and he didn’t think it was right that he might lose his
      teachers (therapists) because his Mom couldn’t afford it on her own anymore.
      He said, “The government is bad to do that to a kid and it just isn’t fair”.
      I told him the government wasn’t bad, but they had made some bad
      choices. He wanted to know what he could do, I suggested he write them a
      letter and tell them what he had to say. I didn’t seriously think anything
      would actually come of it as he sauntered off to watch T.V. Fifteen minutes
      later… he shouts up the stairs “Mom, how do you spell government?”
      That was the beginning of his advocacy, here was a child who once
      needed advocating for and he was now taking it upon himself to speak for
      himself, his friends and other kids with autism.
      Dear Goverment, I do not Like you'r rules. Because if children only
      get help untill there six years old is not fair because if I had teachers
      untill I was six I would of had lot's of Austum to deal with for the rest of
      my Life but because I'm nine now and I still have teachers. Now Iv'e lost
      most of it but I still have some left ANd I don't want outher kids to have
      porBlems with it Like my firend Steven. You will Spoil CanaDa if you go on
      Like this. If you don't follow this Letter I will get all the Parents I can
      to try and Stop You with my firends and me too. The BaD goverment should not
      get any more money untill they use it properly. What use is Canada if the
      government are'nt being fair to the people. All Canadins exept you are you'r
      ravils because You are doing this to us.


      --------------------------------------

      from: ANthoNy Not long after he wanted to talk to the judge. The
      government hadn’t fixed it once they read his letter, he knew the judge
      would decide and he wanted to tell her that it wasn’t fair that she needed
      to tell the government they couldn’t take the kids teachers away anymore.
      These are my notes from his testimony, written later that night so I’
      ve missed some of what he said.
      10:00 a.m. June 4, 2003 Before court began he was given a tour of the
      courtroom and given the opportunity to sit in the witness chair and test the
      microphone. Our lawyer, David Corbett then took Anthony around and
      introduced him to all the lawyers and he shook everyone's hand.
      The judge then called all the lawyers out to speak with her before
      court was in session. I do not know what was said in that 2 minutes, though
      I will venture a guess that she wanted to be sure that everyone was clear to
      handle the child witness with care and sensitivity.
      Anthony was called to the witness stand, he walked up to the chair
      with purpose and a mission, and he was not at all worried or nervous.
      Justice Kiteley started by talking to him and asked him his name, age,
      where he goes to school, what grade he is in, his teachers name, does he
      like school and if he had any best friends? She was clearly trying to put
      him at ease. He did a great job of responding to all the questions in a
      loud clear voice; he especially liked having his own microphone, which he
      made sure he used.
      Justice Kiteley then moved on and asked him if he new what it meant to
      tell a lie? Which he gave her an example of telling the truth, she asked if
      he could give an example of a lie, which he readily supplied. She then
      asked him if he knew what it meant to promise to tell the truth. He said,
      “That's when you make a promise to God to tell the truth”.
      Justice Kiteley finished by asking him if he knew what would happen if
      he didn't tell the truth, to which he responded, “That would be wrong and
      breaking a promise”. She was looking for “That could get me in trouble”; so
      very kindly she asked him if he thought he would be punished if he lied. He
      looked at her and said, “Yes I think I coooould”. With that she was done
      and allowed our lawyer to talk with him.
      David Corbett was very animated with him and asked him about his
      autism, to which he replied by stretching his arms out really wide, “I used
      to have a lot of autism now I just have a little (he brought his hands close
      together to show a little), but I want to have none (to which he dropped his
      hands down to his side and told them that dropping his hands meant zero).
      David asked him about a letter he had written and gave him a copy of it.
      David asked him if this was his letter, he said “Yes, and I'm working on
      making my printing better!” David asked him if he had given his letter to
      the government, he replied “Yes, I took it to the government that lives
      close to our house”.
      David then asked him if he would please read his letter for the court,
      which he did with great pride.
      David then thanked him and told him it was a great letter! David
      asked him if he had worked hard himself, and he said “I worked very hard,
      though Mom says that I got rid of the autism myself by working hard, I
      needed my tutors they helped me a lot, I wouldn't have been able to get rid
      of most of it without my tutors”. He continued, “It takes a long time to
      get rid of it, it just doesn’t happen quickly, it's not fair to take the
      teachers away just because they are six”.
      Both the Deskin's lawyers and the Attorney General declined to ask him
      any further questions.
      Justice Kiteley, then acknowledging his desire to hand deliver his own
      letter to the Judge asked him to personally give her his letter, that it was
      an important piece of evidence. He proudly put the three papers back in
      order and handed them over to the judge.
      If nothing else comes of this trial, I will forever stand in awe of
      Justice Kiteley for taking such exceptional care to ensure that this child's
      well being was protected before she would even consent to allow his
      testimony and then the compassion and respect she extended him in the
      courtroom today was immeasurable.
      I never doubted his ability to speak out and stand up for himself; my
      only concern was questions that might have been directed at him from the
      crown that might have been a little intrusive and made him uncomfortable,
      then again knowing my son he would have given it to them both barrels
      loaded. The gift of tenderness and respect that both Justice Kiteley and
      David Corbett extended him today was a Mom's dream come true! As we were
      leaving the courthouse, he told us he was not happy that the other guys
      (Attorney General) had not asked him any questions, he announced “I still
      had a lot of things to tell them”.
      Need I say that his self-esteem topped the charts today!


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