Welcome to the web log in memory of Dr. Eric Schopler (1927-2006), a professor of psychiatry and psychology at UNC-Chapel Hill for more than 40 years and a pioneer in the humane and effective treatment of autism. In an era when parents were blamed for causing what was felt to be a psychological problem, Eric was one of the first to use empirical research to establish the true, neurological basis of autism and its effective treatment--treatment that included parents as co-therapists. His methods have been studied and adopted by autism programs around the world, bringing hope and brighter futures to thousands of families in dozens of countries. In the process, hundreds of people have come to know and admire him and have been privileged to call him "friend." This web log is dedicated to sharing and preserving the memories that these friends, family and colleagues have of this truly unique and great man.
Ask the Experts : The ASA Advocate Interview
Eric Schopler, Ph.D.
Founder, Division TEACCH, University of North Carolina
Reprinted from the ADVOCATE, July/August 1994
ADVOCATE: As the founder of TEACCH [1], the nation's first and only comprehensive statewide program for the treatment and education of autistic and communication-handicapped children, you have witnessed the evolution of your program over a period of thirty years. What are the most important principles and teaching methods that you feel have withstood the test of time, and which if any have not?
Dr Schopler: Autism is a developmental disorder that usually needs some special consideration throughout the individual's life time. We don't have a cure yet, but a lot of good people are searching for one. That being the case, I've learned that the parent's perspective is the single most important concept that has and continues to shape and inform our treatment program and our research. It means that we have an equal working relationship in which the professional people can learn from and use the parent's unique experience with their own child, and where as professionals we can offer the parents knowledge of the field and our experience with many children. We have parents help to determine our program priorities. Together we focus on developing a school program, a summer camp, group homes, and supported employment and preschool programs. Parents have input in hiring new staff.
The parents' perspective informs our multidiciplinary training in the generalist model. That means we expect our trainees, whether they are social workers, educators, psychologists, speech pathologists or psychiatrists, to have a working knowledge of all problems raised by autism, not just the special angles they studied in their professional schools.
Much of our research is aimed at solving problems involving the parental perspective. There are now some parents who believe they should make decisions on service, research, and treatment priorities without professional collaboration. But I believe that makes their struggle more uphill and difficult that with good professional collaboration.
ADVOCATE: What has not withstood the test of time?
Dr Schopler: From the outset I learned that the pursuit of special treatment techniques, and possible cures, was an all-consuming interest in many professionals and researchers and that was highly desirable from ours and the parents' perspective. However, I have learned that too often the rewards for that pursuit were given to the marketing of it rather than to the results. The results promised by the journalists or promoters were not supported by subsequent experience. The dozens of specific techniques that have come along during these thirty years have the following things in common with each other:
1. Usually they are based on an interesting and exciting-sounding idea.
2. They are usually reported as being effective or miraculous cures in a few anecdotal instances -- the enthusiasms of initial pilot studies -- but the negative side effects and costs are not discussed.
3. None of these techniques have been effective with all autistic children.
For example, the use of Fenfluramine was first brought to public attention with a case published in the New England Journal of Medicine, because the drug was believed to have doubled the child's I.Q. After parental excitement subsided, that result was not replicated again. Deinstitutionalization was formulated as a rational political attack on various institutional evils. The growing number of street people were neither anticipated nor planned for. Facilitated communication has been broadly promoted as a communication breakthrough. Unanticipated was research showing that most communication is produced by the facilitator, not the child. Likewise unsubstantiated allegations of sexual abuse against parents and caretakers was not anticipated by many FC advocates.
ADVOCATE: Are there other principles and teaching methods that have withstood the test of time?
Dr Schopler: There are at least six other principles that have guided our TEACCH system both for our research and service. These are:
1) That autism usually involves a life-long struggle. Our goal is to improve each individual's adaptation in two ways: First is to improve each individual's living skills with the best available techniques and second when there is an impeding deficit, to accommodate the environment to that deficit. Our TEACCH program is dedicated to these two efforts, with the following:
2) An assessment of each individual client, using both formal assessment - the best and most appropriate tests available and also informal assessment, meaning the best observations possible by teachers, parents, and all others in regular contact with the child. In other words, the best understanding of each individual's
learning problems and strengths is needed to identify the best individualized treatment possible.
3) For a majority of individuals with autism or PDD structures using their strengths in visual processing to overcome difficulties in auditory processing, organization, and memory are most effective for teaching independent learning, and preventing behavior problems. These visual structures can be used at school, at home, and in the workplace, and they can be faded as needed.
4) The most effective teaching approach is to enhance skills of children and to recognize and accept their shortcomings. This priority is especially important for children, but also for adults, parents, staff, and the rest of us.
5) The most useful intervention is based on behavior theory and cognitive theory. This takes into account differences according to development and allows working with motivation, spontaneous communication, and social interactions.
6) Training professionals in the generalist model, meaning the ability to deal with the whole range of problems raised by autism, regardless of their specialty training. This enables them to take responsibility for the whole child, regardless of professional specialization. It enables them to refer to specialists when appropriate, and most of all it is taking the parent's perspective, for parents are expected to function as generalists regardless of whether or not their child has special needs.
Under these circumstances the best treatment approach is to select the individualized treatment techniques using parental choice with good professional collaboration.
ADVOCATE: Parents are faced with a barrage of treatment and educational options from which to chose for their children -- programs and treatments that are often in direct conflict with one another. What advice can you give to parents to help them evaluate which choices are the best for their children?
Dr Schopler: The best advice in the long term is to develop a viable and cost effective community support system, along the lines of what we are going in North Carolina. But within that context, to continue searching and evaluating the new treatment techniques, and to evaluate them according to empirical research and rational observation; and to make all treatment evaluation and research available to parents as soon as possible. This will enable them to determine how to prioritize a new treatment technique or whether to incorporate it in their own child's treatment program.
ADVOCATE: In the wake of dramatic changes that have recently occurred, and will continue to occur in the treatment of autism (i.e. AIT, FC, etc.), what changes do you foresee in the future?
Dr Schopler: We are seeing a growing number of research programs and young people going into the field. This is an exciting development that will lead to improved understanding and treatment of autism. At the same time there is a potential for an increasing and alarming development where potential techniques are confused or replaced by political ideology. I think this is happening in FC, the notion of total inclusion for everyone, and other methods that are extended beyond all supporting data of effectiveness. This kind of politicizing of specific techniques oversimplifies the problem, prevents parental choice, benefits just a few promoters and is potentially harmful to the clients, their families and the larger community.
ADVOCATE: In conjunction with the last question, are AIT and FC ever incorporated into the TEACCH program?
Dr Schopler: As I mentioned before, new pilot research is encouraged in the TEACCH program, and our families have participated in experimental programs like AIT, FC, and many others. However, until they are established, we recognize them as experimental programs and try not to have them replace the community based educational approach we have found to be consistently effective.
ADVOCATE: The controversy over FC has continued to grow, especially since the airing of a feature story on the Public Broadcasting System's Front Line program. What are your views on the validity of this technique?
Dr Schopler: FC is one form of augmented communication which includes typewriters, computers, picture systems, and many augmented communication technologies. It is a valid technique that has had both professional and parental support.
On the other hand, it has been promoted in the most reckless fashion, with claims for high levels of communication, which actually originate in the facilitator instead of the client; using the technique for accusation of sexual abuse. Some FC ideologues have claimed that "over 100%" of handicapped children have been sexually abused by the time they reach 18. They claim that these children don't have to look at the letterboard to communicate because they are telepathic. There are many destructive consequences for such a process, not the least of which is denying or oversimplifying the nature of the handicap, impeding finding the best augmented communication system for children who can use them, and in some cases destroying families who are accused of child abuse without substantiating evidence by this irrational process.
ADVOCATE: Can you explain the CARS rating system and how this diagnostic test came to be developed?
Dr Schopler: When I first came into the field, the diagnosis of autism could only be made by a highly specialized psychiatrist who in most cases was also a Freudian psychoanalyst. The diagnosis was both subjective and costly for parents. It was usually based on incorrect and inappropriate psychoanalytic assumptions. We developed the Childhood Autism Rating Scale in the early 1970s in order to establish a diagnostic system that was based on observed behavior instead of assumptions, one that could be used reliably by any number of professionals, where the diagnosis was public and accountable.
The CARS used only 15 scales that can be compiled from direct observation, parents, reports, or clinic records. It has been replicated in many published studies and I am pleased to report that it has been shown to have reliable and valid psychometric properties more consistently than any other scales currently available.
ADVOCATE: What are your views on the current trend for mainstreaming?
Dr Schopler: The terms mainstreaming, integration and inclusion are used differently by different people. Generally all three refer to the participation in the non-handicapped community. I think that community inclusion has been the basis of our TEACCH program from the outset and is an essential aspect of all our treatment goals and procedures. However, when it's used as an ideology, requiring it of all children, it denies individual understanding of handicap and special needs, and subverts parental choice. For the child it can increase needless frustration and stress in learning and can produce needless and unfair feelings of classroom competition. This in turn can decrease social integration. Mainstreaming works best when it results from parent-school collaboration.
ADVOCATE: The Autism Society of North Carolina has an impressive network of ancillary programs and services for parents, professionals and the autistic population. It has a new summer camp to be opened in the near future and state and federal funding unmatched by any other state. How did this network develop?
Dr Schopler: I have worked closely with ASA since it was first started as NSAC. Probably I was the only professional who chaired the PPA (Panel of Professional Advisors) on two different occasions. Through my long association with ASA, I learned what was useful and what was not. Much of that came in handy when I helped our parents form ASNC (Autism Society of North Carolina), our State Society. This resulted in our most important achievements. The success of both ASNC and TEACCH comes from long term parent-professional collaboration that includes both the University of North Carolina
and the legislature. In that process we have collaborated on the development of the best services, relevant research, and multidisciplinary training in the generalist model. This has consistently attracted the interest of talented parents, professionals, University faculty and staff, who pursued the parent-professional collaboration perspective with spontaneous interest and effectiveness. This has resulted in cost-effective programs, relatively little due process and court litigation, and consistent University and state support. Some have argued that this development is unique to N.C., however, we find it is increasingly being replicated in other states and countries.
ADVOCATE: On a more personal note, are there any other new projects you are working on? Do you ever collaborate with your wife Margaret Lansing, an Educational Specialist?
Dr Schopler: My wife Margaret has co-authored a number of publications with me and has been my most constant model of the generalist. Our projects have included helping families with the problems of autism, developing the TEACCH program, coauthoring books on teaching strategies, raising five children and nine grandchildren, running a small farm, raising catfish, and developing a small farm community.
Now that our younger colleagues have taken on the running of the TEACCH program we are focusing our time and interests more on writing, and introducing our TEACCH system in other countries.
Interview questions were formulated for the Advocate by Kim Ingraham.
[1]Treatment and Education of Autistic and Related Communication Handicapped CHildren.
Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814-3015
Tel: (800)-3AUTISM
(301)-657-0881
Fax: (301)-657-0869
Developed on behalf of the ASA by: Walter Winfield & Ben Dorman
Founder, Division TEACCH, University of North Carolina
Reprinted from the ADVOCATE, July/August 1994
ADVOCATE: As the founder of TEACCH [1], the nation's first and only comprehensive statewide program for the treatment and education of autistic and communication-handicapped children, you have witnessed the evolution of your program over a period of thirty years. What are the most important principles and teaching methods that you feel have withstood the test of time, and which if any have not?
Dr Schopler: Autism is a developmental disorder that usually needs some special consideration throughout the individual's life time. We don't have a cure yet, but a lot of good people are searching for one. That being the case, I've learned that the parent's perspective is the single most important concept that has and continues to shape and inform our treatment program and our research. It means that we have an equal working relationship in which the professional people can learn from and use the parent's unique experience with their own child, and where as professionals we can offer the parents knowledge of the field and our experience with many children. We have parents help to determine our program priorities. Together we focus on developing a school program, a summer camp, group homes, and supported employment and preschool programs. Parents have input in hiring new staff.
The parents' perspective informs our multidiciplinary training in the generalist model. That means we expect our trainees, whether they are social workers, educators, psychologists, speech pathologists or psychiatrists, to have a working knowledge of all problems raised by autism, not just the special angles they studied in their professional schools.
Much of our research is aimed at solving problems involving the parental perspective. There are now some parents who believe they should make decisions on service, research, and treatment priorities without professional collaboration. But I believe that makes their struggle more uphill and difficult that with good professional collaboration.
ADVOCATE: What has not withstood the test of time?
Dr Schopler: From the outset I learned that the pursuit of special treatment techniques, and possible cures, was an all-consuming interest in many professionals and researchers and that was highly desirable from ours and the parents' perspective. However, I have learned that too often the rewards for that pursuit were given to the marketing of it rather than to the results. The results promised by the journalists or promoters were not supported by subsequent experience. The dozens of specific techniques that have come along during these thirty years have the following things in common with each other:
1. Usually they are based on an interesting and exciting-sounding idea.
2. They are usually reported as being effective or miraculous cures in a few anecdotal instances -- the enthusiasms of initial pilot studies -- but the negative side effects and costs are not discussed.
3. None of these techniques have been effective with all autistic children.
For example, the use of Fenfluramine was first brought to public attention with a case published in the New England Journal of Medicine, because the drug was believed to have doubled the child's I.Q. After parental excitement subsided, that result was not replicated again. Deinstitutionalization was formulated as a rational political attack on various institutional evils. The growing number of street people were neither anticipated nor planned for. Facilitated communication has been broadly promoted as a communication breakthrough. Unanticipated was research showing that most communication is produced by the facilitator, not the child. Likewise unsubstantiated allegations of sexual abuse against parents and caretakers was not anticipated by many FC advocates.
ADVOCATE: Are there other principles and teaching methods that have withstood the test of time?
Dr Schopler: There are at least six other principles that have guided our TEACCH system both for our research and service. These are:
1) That autism usually involves a life-long struggle. Our goal is to improve each individual's adaptation in two ways: First is to improve each individual's living skills with the best available techniques and second when there is an impeding deficit, to accommodate the environment to that deficit. Our TEACCH program is dedicated to these two efforts, with the following:
2) An assessment of each individual client, using both formal assessment - the best and most appropriate tests available and also informal assessment, meaning the best observations possible by teachers, parents, and all others in regular contact with the child. In other words, the best understanding of each individual's
learning problems and strengths is needed to identify the best individualized treatment possible.
3) For a majority of individuals with autism or PDD structures using their strengths in visual processing to overcome difficulties in auditory processing, organization, and memory are most effective for teaching independent learning, and preventing behavior problems. These visual structures can be used at school, at home, and in the workplace, and they can be faded as needed.
4) The most effective teaching approach is to enhance skills of children and to recognize and accept their shortcomings. This priority is especially important for children, but also for adults, parents, staff, and the rest of us.
5) The most useful intervention is based on behavior theory and cognitive theory. This takes into account differences according to development and allows working with motivation, spontaneous communication, and social interactions.
6) Training professionals in the generalist model, meaning the ability to deal with the whole range of problems raised by autism, regardless of their specialty training. This enables them to take responsibility for the whole child, regardless of professional specialization. It enables them to refer to specialists when appropriate, and most of all it is taking the parent's perspective, for parents are expected to function as generalists regardless of whether or not their child has special needs.
Under these circumstances the best treatment approach is to select the individualized treatment techniques using parental choice with good professional collaboration.
ADVOCATE: Parents are faced with a barrage of treatment and educational options from which to chose for their children -- programs and treatments that are often in direct conflict with one another. What advice can you give to parents to help them evaluate which choices are the best for their children?
Dr Schopler: The best advice in the long term is to develop a viable and cost effective community support system, along the lines of what we are going in North Carolina. But within that context, to continue searching and evaluating the new treatment techniques, and to evaluate them according to empirical research and rational observation; and to make all treatment evaluation and research available to parents as soon as possible. This will enable them to determine how to prioritize a new treatment technique or whether to incorporate it in their own child's treatment program.
ADVOCATE: In the wake of dramatic changes that have recently occurred, and will continue to occur in the treatment of autism (i.e. AIT, FC, etc.), what changes do you foresee in the future?
Dr Schopler: We are seeing a growing number of research programs and young people going into the field. This is an exciting development that will lead to improved understanding and treatment of autism. At the same time there is a potential for an increasing and alarming development where potential techniques are confused or replaced by political ideology. I think this is happening in FC, the notion of total inclusion for everyone, and other methods that are extended beyond all supporting data of effectiveness. This kind of politicizing of specific techniques oversimplifies the problem, prevents parental choice, benefits just a few promoters and is potentially harmful to the clients, their families and the larger community.
ADVOCATE: In conjunction with the last question, are AIT and FC ever incorporated into the TEACCH program?
Dr Schopler: As I mentioned before, new pilot research is encouraged in the TEACCH program, and our families have participated in experimental programs like AIT, FC, and many others. However, until they are established, we recognize them as experimental programs and try not to have them replace the community based educational approach we have found to be consistently effective.
ADVOCATE: The controversy over FC has continued to grow, especially since the airing of a feature story on the Public Broadcasting System's Front Line program. What are your views on the validity of this technique?
Dr Schopler: FC is one form of augmented communication which includes typewriters, computers, picture systems, and many augmented communication technologies. It is a valid technique that has had both professional and parental support.
On the other hand, it has been promoted in the most reckless fashion, with claims for high levels of communication, which actually originate in the facilitator instead of the client; using the technique for accusation of sexual abuse. Some FC ideologues have claimed that "over 100%" of handicapped children have been sexually abused by the time they reach 18. They claim that these children don't have to look at the letterboard to communicate because they are telepathic. There are many destructive consequences for such a process, not the least of which is denying or oversimplifying the nature of the handicap, impeding finding the best augmented communication system for children who can use them, and in some cases destroying families who are accused of child abuse without substantiating evidence by this irrational process.
ADVOCATE: Can you explain the CARS rating system and how this diagnostic test came to be developed?
Dr Schopler: When I first came into the field, the diagnosis of autism could only be made by a highly specialized psychiatrist who in most cases was also a Freudian psychoanalyst. The diagnosis was both subjective and costly for parents. It was usually based on incorrect and inappropriate psychoanalytic assumptions. We developed the Childhood Autism Rating Scale in the early 1970s in order to establish a diagnostic system that was based on observed behavior instead of assumptions, one that could be used reliably by any number of professionals, where the diagnosis was public and accountable.
The CARS used only 15 scales that can be compiled from direct observation, parents, reports, or clinic records. It has been replicated in many published studies and I am pleased to report that it has been shown to have reliable and valid psychometric properties more consistently than any other scales currently available.
ADVOCATE: What are your views on the current trend for mainstreaming?
Dr Schopler: The terms mainstreaming, integration and inclusion are used differently by different people. Generally all three refer to the participation in the non-handicapped community. I think that community inclusion has been the basis of our TEACCH program from the outset and is an essential aspect of all our treatment goals and procedures. However, when it's used as an ideology, requiring it of all children, it denies individual understanding of handicap and special needs, and subverts parental choice. For the child it can increase needless frustration and stress in learning and can produce needless and unfair feelings of classroom competition. This in turn can decrease social integration. Mainstreaming works best when it results from parent-school collaboration.
ADVOCATE: The Autism Society of North Carolina has an impressive network of ancillary programs and services for parents, professionals and the autistic population. It has a new summer camp to be opened in the near future and state and federal funding unmatched by any other state. How did this network develop?
Dr Schopler: I have worked closely with ASA since it was first started as NSAC. Probably I was the only professional who chaired the PPA (Panel of Professional Advisors) on two different occasions. Through my long association with ASA, I learned what was useful and what was not. Much of that came in handy when I helped our parents form ASNC (Autism Society of North Carolina), our State Society. This resulted in our most important achievements. The success of both ASNC and TEACCH comes from long term parent-professional collaboration that includes both the University of North Carolina
and the legislature. In that process we have collaborated on the development of the best services, relevant research, and multidisciplinary training in the generalist model. This has consistently attracted the interest of talented parents, professionals, University faculty and staff, who pursued the parent-professional collaboration perspective with spontaneous interest and effectiveness. This has resulted in cost-effective programs, relatively little due process and court litigation, and consistent University and state support. Some have argued that this development is unique to N.C., however, we find it is increasingly being replicated in other states and countries.
ADVOCATE: On a more personal note, are there any other new projects you are working on? Do you ever collaborate with your wife Margaret Lansing, an Educational Specialist?
Dr Schopler: My wife Margaret has co-authored a number of publications with me and has been my most constant model of the generalist. Our projects have included helping families with the problems of autism, developing the TEACCH program, coauthoring books on teaching strategies, raising five children and nine grandchildren, running a small farm, raising catfish, and developing a small farm community.
Now that our younger colleagues have taken on the running of the TEACCH program we are focusing our time and interests more on writing, and introducing our TEACCH system in other countries.
Interview questions were formulated for the Advocate by Kim Ingraham.
[1]Treatment and Education of Autistic and Related Communication Handicapped CHildren.
Autism Society of America
7910 Woodmont Avenue, Suite 300
Bethesda, MD 20814-3015
Tel: (800)-3AUTISM
(301)-657-0881
Fax: (301)-657-0869
Developed on behalf of the ASA by: Walter Winfield & Ben Dorman
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