Meeting the needs of families living with children
diagnosed with Autism Spectrum Disorder
Launch of Royal Irish Academy Report:
Belfast, N. Ireland
April 25th, 2008
Mickey Keenan FBPsS, BCBA-D
Good afternoon everyone. Welcome to this launch, which in many ways is an historic occasion. It is the first time that a public document exists in which a group outside of the usual autism circles in our community has had a chance to comment on the treatment of families of children with autism. We are extremely thankful to the Royal Irish Academy for the funding they provided to help create this opportunity. By the end of this meeting parents will have some information that may help them consider their next move in their struggle to make life better for themselves and for others in similar situations.
In my presentation I will be setting the scene for a summary of the findings in the report to be delivered by Dr. Karola Dillenburger from Queen’s University. Before I begin I think it is important to acknowledge publicly the tremendous amount of work done by the team, especially Alvin Doherty. We produced this report in one year, all because of Alvin’s sustained hard work.
I will address some historical issues that are responsible for us deciding to invest our time and energy into producing the report. I won’t be discussing particular findings, but rather I will address the background responsible for the lack of investment in the use of the Scientific Method to help families deal with autism.
I don’t need to explain to this audience the devastation that autism causes for a family. At the beginning of my learning about it, I felt compelled to do something to help. Up until then the only thing available to the parents and professionals was a commercial package called TEACCH. In workshops run on Saturday mornings at the Coleraine campus of the University of Ulster I taught my class of dedicated parents the basics of science. I introduced them to the
Scientific Method as it applies to working with individuals. All the time, the goal was to adopt teaching strategies that maximized the potential of their child. And these strategies were not pulled out of thin air. They exist in thousands of published research articles dedicated to the understanding of human behaviour.
In my classes parents were encouraged to give presentations to share the results of projects they had carried out with their children. While daunting for many, that act in itself set the stage for what was to become PEAT. Parents recognized that data-based decision making provided by science was empowering, that it provided them with skills through its focus on accurately defining the individual needs of each child, that its inherent holistic perspective guided their decision making, and that it was at last something that offered hope for improvement, no matter how small.
The PEAT group (www.peatni.org) was set up in 1997 by a group of parents dissatisfied by what statutory authorities were doing to address the needs of their children. They were the first group in Ireland to have as their mission statement reference to the need for science-based
treatments for autism. Many families now have benefited from what PEAT has done for them. Other organizations are following suit.
Together with PEAT parents, we wrote the first book published in Ireland and the first in the rest of Europe explaining the science of Behaviour Analysis to parents. Like any science, there is a wealth of technical, well-defined terms that is needed to ensure precision. But these terms often seem like difficult jargon to parents who first encounter them. This book has since been translated into Japanese. Why anyone would want to do that can be understood when I read to you extracts from a review of the book. This review by a leading scholar in the field was called ‘A voice in Europe’ and it was published in the flagship journal of the Association for Behavior Analysis International (ABAI). Since 1974, the ABAI has been the primary professional organization for members interested in the philosophy, science, application, and teaching of behavior analysis.
An additional benefit accrues to those of us who work in a European context in that the book comes out of that context and demonstrates to skeptical professionals on this side of the Atlantic that behavioral intervention is not an idiosyncratic North American phenomenon, culturally specific and doomed to failure in other contexts. One of the frequent challenges for those of us who work in the United Kingdom, for example, is that "this approach is very American" or "that might work in the States, but it won't work here where we do things so differently." The concluding chapter argues forcefully that principles of behavior and behavior change operate with the same ubiquity in Ireland (and, by extension, Europe) as they do in other places, and the argument is substantiated throughout this book by the provision of data and meticulous accounts of interventions.
Perhaps the most significant benefit to parents and professionals alike is the level of detail the authors provide on both process and outcome. In terms of process, the reader is taken step by step through real procedures used in real cases: identifying target behavior, clearly describing it, and designing and evaluating interventions. The reader is shown that no matter how well interventions are designed, they often have to be "tweaked" as a result of an individual child's reaction. …… In terms of outcome, the book is replete with detailed figures, diagrams, and graphs that show the level of precision required to keep track of changes in behavior and to evaluate the effect of discrete interventions and whole programs over time. The detailed treatment of individual cases used as illustrations demonstrates that behavior analysis is an ongoing process of assessment, design, implementation, and reassessment.
[Now this is an important point because it emphasizes the extent to which parents were being taught how to use the scientific method with individual children. There is an argument making the rounds here that misunderstands this point completely. It goes like this: every child is different and therefore the science of Behaviour Analysis is not
suitable for all children. Its uptake is also rejected because it is method driven. However, let me repeat what the reviewer said when describing the scientific method when applied to individuals. It begins with the process of assessment of the needs of the individual (nothing wrong with that). Then there is the design of an intervention, usually based on proven effectiveness (nothing wrong with that). Then there is the
implementation of the intervention (nothing wrong with that). Finally there is reassessment to determine whether the intervention has been effective or if it needs further adjustment (nothing wrong with that). What is intriguing about the myths surrounding the applications of Behaviour Analysis is that, in the study of human behaviour generally, only Behaviour Analysis has pioneered the use of the scientific method to meet the needs of the individual. Behaviour Analysis, then, is method driven in the sense that the scientific method is used. Surely there can’t be anything wrong with educating parents in science?]
Parents' Education as Autism Therapists is a useful resource for teachers of behavior analysis. It provides a clear and detailed introduction to behaviour analysis in an applied context and can be recommended without hesitation to students. Behavior analysts in training will find this book helpful for all of the reasons mentioned above: the level of detail it provides, its copious representations of data, and the numerous examples of real problems and interventions taken from the experience of its authors. Parents of autistic children will find in this book a welcome relief from the fuzzy and unhelpful assessments of their children's difficulties provided all too often by other professionals. Furthermore, the practical successes described in the book will no doubt motivate parents to seek out specialists in behavior analysis rather than resigning themselves and their children to the pessimistic prognoses still given by most other professionals in this area.
A Voice on Autism from Europe: A Review of Parents' Education as Autism Therapists, Edited by Keenan, Kerr, and Dillenburger.
Mecca Chiesa, University of Paisley, Scotland The Behavior Analyst (2001) Vol. 24, pps l0 l-105
Now let me read to you extracts from a different kind of review of the same book.
It is hard to judge the audience, but I assume it is mainly parents, given that jargon is laboriously `` translated '' into English. That being the case, it is hard to see why the jargon is used in the first place, except perhaps to give an aura of`` science ''.
If parents or others come to this book wanting to know what running an ABA home-based programme is like, I think they would get a reasonably good idea.
After discussion some other issues raised by the book, the author then goes on to say the following:
The argument in this book, then, fails as a scientific treatise. In fact it is reminiscent of a credo of belief, and the whole ABA movement appears increasingly more like a cult than a science.
Rita Jordan, J . Child Psychol . Psychiat . Vol. 42, No. 3, pp. 421-423, 2001
This book review is significant on a number of levels that will become clearer later on. For now, though, I want you to note that the PEAT book, despite its uniqueness and international acclaim, was never cited in the N. Ireland task group report on autism, even though copies
were sent to the group.
Here is another kind of letter, one that I and a group of other professionals received recently.
Dear all,
You may remember that a few months ago I contacted you to ask for help in gathering recent evidence in support of ABA in autism to be used as part of a legal battle that a number of Italian families had initiated against their local health authorities. You will be pleased to hear that the committee has unanimously voted in favour of the families who will now receive funding for their children’s intervention. This is regardless of their age. Additionally, because the families won against the county, the county will also have to provide ABA to all other families requesting this kind of intervention. As all things go in Italy, the state will try to fight the initial decision, nonetheless, it is an important result.
So, on behalf of the families, I want to thank you all for your kind words of support and the material that you provided.
All the best,
Francesca degli Espinosa
(20 February, 2008)
Unfortunately, the underlying theme screaming from this letter is one that exists also in our community. The letter says that while parents may want the scientific method used in the education of their children they have to go to court to get it. Why this should be so is easy to
understand when you know that the science of behaviour analysis is relatively new to Europe.
Only in this past couple of years has it been taught to some of the professionals who work with your children. For many of the other professionals, including psychologists, their familiarity with it is scant because it is not an integral part of their training. And for some of
them, what training they have had doesn’t meet international standards.
Lack of training itself, though, isn’t just the problem. For some reason, lack of training in the science of behaviour analysis includes training in myths about the science, and there are many. Currently in Ireland, the big ones look like this: Behaviour Analysis is not holistic, it is not child centered, and one that I mentioned earlier, it is method driven and therefore not sensitive to the needs of each individual child. Much of the misrepresentation is best captured in the quotation from Catherine Maurice, a parent in the States and author of ‘Let me hear your voice’:
There is widespread misunderstanding and distortion of the approach. Dozens of pseudo-scientific books and articles out there describe it as child abuse, a squelching of the spirit, a crushing of the soul. Treating the symptoms and not the "root cause," what ever that might be; a denial of the self, cruel, manipulative, dehumanizing, punishing, controlling; etc. etc. Moreover, even when people do not attack behaviour analysis, they make glaringly ignorant statements about it,
like "Oh yes, that's where they do discrete trials for forty hours a week." Or, "behavior management is for really low functioning kids."
Catherine Maurice address to the Cambridge Center for Behavioral Studies (CCBS) Annual Board Meeting, Palm Beach, Florida, November 5, 1999.
To compound the problems created by myths, when these myths are challenged, then those who challenge them are viewed as trouble makers, or , as has even been suggested, ‘proseletysers looking for converts, unable to accept criticism’. Where would science be if people were not free to criticize established thinking. It really is very odd indeed that parents find themselves in the role of having to speak out about the benefits of science. Again, Catherine Maurice put it this way:
And then gradually, I began to understand ABA more and more. I started to understand what is was: Not some dehumanizing control of people through a cynical manipulation of rewards and punishments, but rather the light of scientific exploration brought to bear upon behavior, and upon learning.
Catherine Maurice address to the Cambridge Center for Behavioral Studies (CCBS) Annual Board Meeting, Palm Beach, Florida, November 5, 1999.
Is this parent simply a blind convert to the cult of science? I don’t think so! Neither is she marketing a commercial product with little evidence to support its usefulness. Locally, the problems arising from the misrepresentation of science look like this. Within the N. Ireland Task Group report on autism there is a large section dealing with ABA. However, it was written by people not trained in this science. Neither parents from PEAT nor professionals trained in behaviour analysis were consulted on the contents of the report that described behaviour analysis. Despite a comprehensive review by PEAT on the nature of this
misrepresentation (see below), the material has never been corrected.
When misrepresentation exists, one could be forgiven for believing that it was all just misunderstanding. Undaunted, PEAT’s response was to organize conferences with international leaders in the field of ABA. In fact, the first person whose help was enlisted on a number of occasions was Prof. Bobby Newman, a past president of the Association for Science in Autism Treatment. The objective of these conferences was to create opportunities for learning, not just for parents but also for professionals and government officials. However, when professionals don’t engage with leaders in the field of ABA, then opportunities for learning are wasted. This is what happened. On one occasion we even had a conference with 6 leading American professionals, one of whom, Gina Green, was Mental Health Professional of the Year in the States, and she had received an honorary Doctorate from Queen’s University the day before the conference. Government officials North and South were invited but didn’t turn up. Neither Bobby Newman nor Gina Green have ever been approached for their views on whether local professionals have correctly represented ABA, and both are regular visitors to the country.
Although support of PEAT generally has not been proactive, there is evidence of some change taking place. Some authorities have recognized the need for training in science and have funded places for short courses organized by these parents. More recently the parents
have taken their interest in teaching about science to another level. They developed the first multimedia tutorial on Behaviour Analysis for parents. This production is in contrast to a support package developed by the Dept of Education where Behaviour Analysis didn’t’ even get a mention. Other parents across the world know of PEAT and their struggles. Parents from New Zealand, for example, want to license a copy of the multimedia package.
What happens when government bodies are better at understanding Behaviour Analysis? Another letter, this time from the offices of Premier Dalton McGuinty in Ontario can be found at the back of the report. This letter shows the financial investment being made in Behaviour Analysis. The Ministry of Children and Youth Services makes publicly funded Intensive Behaviour Intervention (IBI) services based on Behaviour Analysis available for all children with autism through the Autism Intervention Program. Just as in PEAT, parents are viewed as
critical to the success of Intensive Behavioural Intervention and there is parent-training. There is no age limit to which children and young people with autism can receive treatment. Parents and professionals in Ontario recognise that there needs to be quality control and that it is
imperative to have fully qualified and certified behaviour analysts who are trained in the science of behaviour analysis at university level and who have had the required supervised practice experience. Remember this point for it comes up again in a moment.
Also in the report is the following from the Official Journal of the American Academy of Pediatrics:
“The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.” Myers & Johnson, 2007, p. 1164
Surely this can’t be right. Not them as well as the Canadians, and the Surgeon General in the States, and quite a few other bodies as well. If the evidence for ABA is so well known then why is there such a fuss here about investing in it? What makes this quotation interesting,
over and above the obvious, is that when our Dept of Education was asked for a list of published peer-reviewed journal articles showing an eclectic approach to be equal to or more effective than Behaviour Analysis they admitted they didn’t have any. Yet, an eclectic approach is what is actively being promoted here and not Behaviour Analysis. When it comes to international standards of training in Behaviour Analysis, the document before you notes the contrast between local bodies and the United States Department of Defence. The Dept of
Defence actively promotes the international standards outlined by the Behaviour Analysis Certification Board (www.bacb.com). In N. Ireland, though, these international standards are not well known and it seems to be the case that parents are being shouldered with the
responsibility of providing training in science. Yes, Parents!
As I suggested earlier, the source of the problem can be traced right back to the training professionals receive, even that provided under the auspices of the British Psychological Society. As of yet there is no Division of Behaviour Analysis within the BPS and that produces its own consequences, even confusion. For example, recently I was honoured with a Fellowship by the BPS for my work in bringing behaviour analysis to the community. Yet when we asked the BPS to correct the misrepresentation of behaviour analysis in the N. Ireland Task Group Report they were unable to do so. This was not unexpected because this is what happens when one profession is asked to comment on another profession. Now that these issues are on the table, though, it prepares the ground for informed debate with international bodies in behaviour analysis.
What started off here in N. Ireland as a move by parents to provide education in science for other parents has resulted in a conflict of unprecedented proportions. The losers are parents here in the North and their children. In the South there are about 12 ABA schools, but they too are under threat. Apparently, the minister for Education in the Republic is on record as saying that ABA ‘only changes behaviour’. And she is not to be told otherwise. Any science teacher will tell you that when a student gets it wrong it is best for the student to remain open to being corrected.
At home, another recent initiative by local government also has not involved PEAT. Instead, this supposedly independent review body includes both President and Vice-president of only one influential charity. Ignoring parents from PEAT has become a bit of a tradition in our community. Another example concerns the responses over the years from our own Education Ministers. No Education Minister has ever agreed to attend any events organised by PEAT parents here in the North to promote science-based treatment,
Regarding investment in training, the team of behaviour analysts that teaches the Masters in Behaviour Analysis at the University of Ulster has never been approached by any of the authorities to support its activities. Instead, professionals are brought over from the States to
run short ABA courses at rates approaching fees for a full Masters course. In other words, instead of investing in local expertise, public NI funds are used to pay US professionals.
When you look at reactions to what is written by Behaviour Analysts on their science, much of it shared with local authorities, it seems to be the case that all, except behaviour analysts, are to be trusted in providing honest, accurate information on it. I am sure you agree that it would be strange if similar doubts would be levied at Doctors, Educational Psychologists, Clinical Psychologists, or Speech Therapists who want to correct misinformation about their discipline. I am open to correction on this, but I expect that these professionals would not accept that training in their discipline should be conducted solely by local charities, or by people not qualified to teach it. What is strange is that similar concerns for training in the science of behaviour analysis don’t seem to exist.
To sum up, I have drawn attention to the fact that in N. Ireland there are serious misconceptions about the science of behaviour analysis. These mistakes could be forgiven if they were open to correction, but the problem is, they are not. There is no mechanism to have them corrected, nor it seems, any motivation to get accurate information out to parents. If this was simply an academic issue, then it might not matter so much. However, when mistakes transform into a culture of misinformation which affects the lives of children, then things become more serious.
They become more serious because the science of behaviour analysis is recognized by many outside of our community as thee front runner in the treatment of autism.
And they become more serious because the politicians who are reliant on accurate information to draw up policy decisions have no way of indentifying misinformation about this science, especially when any attempts at correcting it are dismissed as reactionary.
And they become more serious because only parents seem interested in highlighting the consequences of the misinformation.
When divisions arise in groups with a common goal, they waste much time and energy. Ultimately, all autism groups share the same concern in persuading politicians to increase the investment in the treatment of children. Current divisions could easily be dissolved if it was accepted that parents who want science-based treatment have a legitimate case, that they have not been hood-winked into wanting something that has no evidence to support its claims, and that their enthusiasm for the scientific method is not to be equated with following a belief. Their voices need to be heard and respected. This report should help them. While correcting the misinformation about ABA, though, it goes beyond concerns about what is the most effective treatment. It gives an insight into how these families are being disadvantaged on a number of levels by a system that struggles through lack of training and investment.
There are many dedicated professionals in the community who care for these children and their families. The voices of parents in this report will add impetus for steps that will enable these professionals to help them.
Belfast, N. Ireland
April 25th, 2008
Mickey Keenan FBPsS, BCBA-D
Good afternoon everyone. Welcome to this launch, which in many ways is an historic occasion. It is the first time that a public document exists in which a group outside of the usual autism circles in our community has had a chance to comment on the treatment of families of children with autism. We are extremely thankful to the Royal Irish Academy for the funding they provided to help create this opportunity. By the end of this meeting parents will have some information that may help them consider their next move in their struggle to make life better for themselves and for others in similar situations.
In my presentation I will be setting the scene for a summary of the findings in the report to be delivered by Dr. Karola Dillenburger from Queen’s University. Before I begin I think it is important to acknowledge publicly the tremendous amount of work done by the team, especially Alvin Doherty. We produced this report in one year, all because of Alvin’s sustained hard work.
I will address some historical issues that are responsible for us deciding to invest our time and energy into producing the report. I won’t be discussing particular findings, but rather I will address the background responsible for the lack of investment in the use of the Scientific Method to help families deal with autism.
I don’t need to explain to this audience the devastation that autism causes for a family. At the beginning of my learning about it, I felt compelled to do something to help. Up until then the only thing available to the parents and professionals was a commercial package called TEACCH. In workshops run on Saturday mornings at the Coleraine campus of the University of Ulster I taught my class of dedicated parents the basics of science. I introduced them to the
Scientific Method as it applies to working with individuals. All the time, the goal was to adopt teaching strategies that maximized the potential of their child. And these strategies were not pulled out of thin air. They exist in thousands of published research articles dedicated to the understanding of human behaviour.
In my classes parents were encouraged to give presentations to share the results of projects they had carried out with their children. While daunting for many, that act in itself set the stage for what was to become PEAT. Parents recognized that data-based decision making provided by science was empowering, that it provided them with skills through its focus on accurately defining the individual needs of each child, that its inherent holistic perspective guided their decision making, and that it was at last something that offered hope for improvement, no matter how small.
The PEAT group (www.peatni.org) was set up in 1997 by a group of parents dissatisfied by what statutory authorities were doing to address the needs of their children. They were the first group in Ireland to have as their mission statement reference to the need for science-based
treatments for autism. Many families now have benefited from what PEAT has done for them. Other organizations are following suit.
Together with PEAT parents, we wrote the first book published in Ireland and the first in the rest of Europe explaining the science of Behaviour Analysis to parents. Like any science, there is a wealth of technical, well-defined terms that is needed to ensure precision. But these terms often seem like difficult jargon to parents who first encounter them. This book has since been translated into Japanese. Why anyone would want to do that can be understood when I read to you extracts from a review of the book. This review by a leading scholar in the field was called ‘A voice in Europe’ and it was published in the flagship journal of the Association for Behavior Analysis International (ABAI). Since 1974, the ABAI has been the primary professional organization for members interested in the philosophy, science, application, and teaching of behavior analysis.
An additional benefit accrues to those of us who work in a European context in that the book comes out of that context and demonstrates to skeptical professionals on this side of the Atlantic that behavioral intervention is not an idiosyncratic North American phenomenon, culturally specific and doomed to failure in other contexts. One of the frequent challenges for those of us who work in the United Kingdom, for example, is that "this approach is very American" or "that might work in the States, but it won't work here where we do things so differently." The concluding chapter argues forcefully that principles of behavior and behavior change operate with the same ubiquity in Ireland (and, by extension, Europe) as they do in other places, and the argument is substantiated throughout this book by the provision of data and meticulous accounts of interventions.
Perhaps the most significant benefit to parents and professionals alike is the level of detail the authors provide on both process and outcome. In terms of process, the reader is taken step by step through real procedures used in real cases: identifying target behavior, clearly describing it, and designing and evaluating interventions. The reader is shown that no matter how well interventions are designed, they often have to be "tweaked" as a result of an individual child's reaction. …… In terms of outcome, the book is replete with detailed figures, diagrams, and graphs that show the level of precision required to keep track of changes in behavior and to evaluate the effect of discrete interventions and whole programs over time. The detailed treatment of individual cases used as illustrations demonstrates that behavior analysis is an ongoing process of assessment, design, implementation, and reassessment.
[Now this is an important point because it emphasizes the extent to which parents were being taught how to use the scientific method with individual children. There is an argument making the rounds here that misunderstands this point completely. It goes like this: every child is different and therefore the science of Behaviour Analysis is not
suitable for all children. Its uptake is also rejected because it is method driven. However, let me repeat what the reviewer said when describing the scientific method when applied to individuals. It begins with the process of assessment of the needs of the individual (nothing wrong with that). Then there is the design of an intervention, usually based on proven effectiveness (nothing wrong with that). Then there is the
implementation of the intervention (nothing wrong with that). Finally there is reassessment to determine whether the intervention has been effective or if it needs further adjustment (nothing wrong with that). What is intriguing about the myths surrounding the applications of Behaviour Analysis is that, in the study of human behaviour generally, only Behaviour Analysis has pioneered the use of the scientific method to meet the needs of the individual. Behaviour Analysis, then, is method driven in the sense that the scientific method is used. Surely there can’t be anything wrong with educating parents in science?]
Parents' Education as Autism Therapists is a useful resource for teachers of behavior analysis. It provides a clear and detailed introduction to behaviour analysis in an applied context and can be recommended without hesitation to students. Behavior analysts in training will find this book helpful for all of the reasons mentioned above: the level of detail it provides, its copious representations of data, and the numerous examples of real problems and interventions taken from the experience of its authors. Parents of autistic children will find in this book a welcome relief from the fuzzy and unhelpful assessments of their children's difficulties provided all too often by other professionals. Furthermore, the practical successes described in the book will no doubt motivate parents to seek out specialists in behavior analysis rather than resigning themselves and their children to the pessimistic prognoses still given by most other professionals in this area.
A Voice on Autism from Europe: A Review of Parents' Education as Autism Therapists, Edited by Keenan, Kerr, and Dillenburger.
Mecca Chiesa, University of Paisley, Scotland The Behavior Analyst (2001) Vol. 24, pps l0 l-105
Now let me read to you extracts from a different kind of review of the same book.
It is hard to judge the audience, but I assume it is mainly parents, given that jargon is laboriously `` translated '' into English. That being the case, it is hard to see why the jargon is used in the first place, except perhaps to give an aura of`` science ''.
If parents or others come to this book wanting to know what running an ABA home-based programme is like, I think they would get a reasonably good idea.
After discussion some other issues raised by the book, the author then goes on to say the following:
The argument in this book, then, fails as a scientific treatise. In fact it is reminiscent of a credo of belief, and the whole ABA movement appears increasingly more like a cult than a science.
Rita Jordan, J . Child Psychol . Psychiat . Vol. 42, No. 3, pp. 421-423, 2001
This book review is significant on a number of levels that will become clearer later on. For now, though, I want you to note that the PEAT book, despite its uniqueness and international acclaim, was never cited in the N. Ireland task group report on autism, even though copies
were sent to the group.
Here is another kind of letter, one that I and a group of other professionals received recently.
Dear all,
You may remember that a few months ago I contacted you to ask for help in gathering recent evidence in support of ABA in autism to be used as part of a legal battle that a number of Italian families had initiated against their local health authorities. You will be pleased to hear that the committee has unanimously voted in favour of the families who will now receive funding for their children’s intervention. This is regardless of their age. Additionally, because the families won against the county, the county will also have to provide ABA to all other families requesting this kind of intervention. As all things go in Italy, the state will try to fight the initial decision, nonetheless, it is an important result.
So, on behalf of the families, I want to thank you all for your kind words of support and the material that you provided.
All the best,
Francesca degli Espinosa
(20 February, 2008)
Unfortunately, the underlying theme screaming from this letter is one that exists also in our community. The letter says that while parents may want the scientific method used in the education of their children they have to go to court to get it. Why this should be so is easy to
understand when you know that the science of behaviour analysis is relatively new to Europe.
Only in this past couple of years has it been taught to some of the professionals who work with your children. For many of the other professionals, including psychologists, their familiarity with it is scant because it is not an integral part of their training. And for some of
them, what training they have had doesn’t meet international standards.
Lack of training itself, though, isn’t just the problem. For some reason, lack of training in the science of behaviour analysis includes training in myths about the science, and there are many. Currently in Ireland, the big ones look like this: Behaviour Analysis is not holistic, it is not child centered, and one that I mentioned earlier, it is method driven and therefore not sensitive to the needs of each individual child. Much of the misrepresentation is best captured in the quotation from Catherine Maurice, a parent in the States and author of ‘Let me hear your voice’:
There is widespread misunderstanding and distortion of the approach. Dozens of pseudo-scientific books and articles out there describe it as child abuse, a squelching of the spirit, a crushing of the soul. Treating the symptoms and not the "root cause," what ever that might be; a denial of the self, cruel, manipulative, dehumanizing, punishing, controlling; etc. etc. Moreover, even when people do not attack behaviour analysis, they make glaringly ignorant statements about it,
like "Oh yes, that's where they do discrete trials for forty hours a week." Or, "behavior management is for really low functioning kids."
Catherine Maurice address to the Cambridge Center for Behavioral Studies (CCBS) Annual Board Meeting, Palm Beach, Florida, November 5, 1999.
To compound the problems created by myths, when these myths are challenged, then those who challenge them are viewed as trouble makers, or , as has even been suggested, ‘proseletysers looking for converts, unable to accept criticism’. Where would science be if people were not free to criticize established thinking. It really is very odd indeed that parents find themselves in the role of having to speak out about the benefits of science. Again, Catherine Maurice put it this way:
And then gradually, I began to understand ABA more and more. I started to understand what is was: Not some dehumanizing control of people through a cynical manipulation of rewards and punishments, but rather the light of scientific exploration brought to bear upon behavior, and upon learning.
Catherine Maurice address to the Cambridge Center for Behavioral Studies (CCBS) Annual Board Meeting, Palm Beach, Florida, November 5, 1999.
Is this parent simply a blind convert to the cult of science? I don’t think so! Neither is she marketing a commercial product with little evidence to support its usefulness. Locally, the problems arising from the misrepresentation of science look like this. Within the N. Ireland Task Group report on autism there is a large section dealing with ABA. However, it was written by people not trained in this science. Neither parents from PEAT nor professionals trained in behaviour analysis were consulted on the contents of the report that described behaviour analysis. Despite a comprehensive review by PEAT on the nature of this
misrepresentation (see below), the material has never been corrected.
When misrepresentation exists, one could be forgiven for believing that it was all just misunderstanding. Undaunted, PEAT’s response was to organize conferences with international leaders in the field of ABA. In fact, the first person whose help was enlisted on a number of occasions was Prof. Bobby Newman, a past president of the Association for Science in Autism Treatment. The objective of these conferences was to create opportunities for learning, not just for parents but also for professionals and government officials. However, when professionals don’t engage with leaders in the field of ABA, then opportunities for learning are wasted. This is what happened. On one occasion we even had a conference with 6 leading American professionals, one of whom, Gina Green, was Mental Health Professional of the Year in the States, and she had received an honorary Doctorate from Queen’s University the day before the conference. Government officials North and South were invited but didn’t turn up. Neither Bobby Newman nor Gina Green have ever been approached for their views on whether local professionals have correctly represented ABA, and both are regular visitors to the country.
Although support of PEAT generally has not been proactive, there is evidence of some change taking place. Some authorities have recognized the need for training in science and have funded places for short courses organized by these parents. More recently the parents
have taken their interest in teaching about science to another level. They developed the first multimedia tutorial on Behaviour Analysis for parents. This production is in contrast to a support package developed by the Dept of Education where Behaviour Analysis didn’t’ even get a mention. Other parents across the world know of PEAT and their struggles. Parents from New Zealand, for example, want to license a copy of the multimedia package.
What happens when government bodies are better at understanding Behaviour Analysis? Another letter, this time from the offices of Premier Dalton McGuinty in Ontario can be found at the back of the report. This letter shows the financial investment being made in Behaviour Analysis. The Ministry of Children and Youth Services makes publicly funded Intensive Behaviour Intervention (IBI) services based on Behaviour Analysis available for all children with autism through the Autism Intervention Program. Just as in PEAT, parents are viewed as
critical to the success of Intensive Behavioural Intervention and there is parent-training. There is no age limit to which children and young people with autism can receive treatment. Parents and professionals in Ontario recognise that there needs to be quality control and that it is
imperative to have fully qualified and certified behaviour analysts who are trained in the science of behaviour analysis at university level and who have had the required supervised practice experience. Remember this point for it comes up again in a moment.
Also in the report is the following from the Official Journal of the American Academy of Pediatrics:
“The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.” Myers & Johnson, 2007, p. 1164
Surely this can’t be right. Not them as well as the Canadians, and the Surgeon General in the States, and quite a few other bodies as well. If the evidence for ABA is so well known then why is there such a fuss here about investing in it? What makes this quotation interesting,
over and above the obvious, is that when our Dept of Education was asked for a list of published peer-reviewed journal articles showing an eclectic approach to be equal to or more effective than Behaviour Analysis they admitted they didn’t have any. Yet, an eclectic approach is what is actively being promoted here and not Behaviour Analysis. When it comes to international standards of training in Behaviour Analysis, the document before you notes the contrast between local bodies and the United States Department of Defence. The Dept of
Defence actively promotes the international standards outlined by the Behaviour Analysis Certification Board (www.bacb.com). In N. Ireland, though, these international standards are not well known and it seems to be the case that parents are being shouldered with the
responsibility of providing training in science. Yes, Parents!
As I suggested earlier, the source of the problem can be traced right back to the training professionals receive, even that provided under the auspices of the British Psychological Society. As of yet there is no Division of Behaviour Analysis within the BPS and that produces its own consequences, even confusion. For example, recently I was honoured with a Fellowship by the BPS for my work in bringing behaviour analysis to the community. Yet when we asked the BPS to correct the misrepresentation of behaviour analysis in the N. Ireland Task Group Report they were unable to do so. This was not unexpected because this is what happens when one profession is asked to comment on another profession. Now that these issues are on the table, though, it prepares the ground for informed debate with international bodies in behaviour analysis.
What started off here in N. Ireland as a move by parents to provide education in science for other parents has resulted in a conflict of unprecedented proportions. The losers are parents here in the North and their children. In the South there are about 12 ABA schools, but they too are under threat. Apparently, the minister for Education in the Republic is on record as saying that ABA ‘only changes behaviour’. And she is not to be told otherwise. Any science teacher will tell you that when a student gets it wrong it is best for the student to remain open to being corrected.
At home, another recent initiative by local government also has not involved PEAT. Instead, this supposedly independent review body includes both President and Vice-president of only one influential charity. Ignoring parents from PEAT has become a bit of a tradition in our community. Another example concerns the responses over the years from our own Education Ministers. No Education Minister has ever agreed to attend any events organised by PEAT parents here in the North to promote science-based treatment,
Regarding investment in training, the team of behaviour analysts that teaches the Masters in Behaviour Analysis at the University of Ulster has never been approached by any of the authorities to support its activities. Instead, professionals are brought over from the States to
run short ABA courses at rates approaching fees for a full Masters course. In other words, instead of investing in local expertise, public NI funds are used to pay US professionals.
When you look at reactions to what is written by Behaviour Analysts on their science, much of it shared with local authorities, it seems to be the case that all, except behaviour analysts, are to be trusted in providing honest, accurate information on it. I am sure you agree that it would be strange if similar doubts would be levied at Doctors, Educational Psychologists, Clinical Psychologists, or Speech Therapists who want to correct misinformation about their discipline. I am open to correction on this, but I expect that these professionals would not accept that training in their discipline should be conducted solely by local charities, or by people not qualified to teach it. What is strange is that similar concerns for training in the science of behaviour analysis don’t seem to exist.
To sum up, I have drawn attention to the fact that in N. Ireland there are serious misconceptions about the science of behaviour analysis. These mistakes could be forgiven if they were open to correction, but the problem is, they are not. There is no mechanism to have them corrected, nor it seems, any motivation to get accurate information out to parents. If this was simply an academic issue, then it might not matter so much. However, when mistakes transform into a culture of misinformation which affects the lives of children, then things become more serious.
They become more serious because the science of behaviour analysis is recognized by many outside of our community as thee front runner in the treatment of autism.
And they become more serious because the politicians who are reliant on accurate information to draw up policy decisions have no way of indentifying misinformation about this science, especially when any attempts at correcting it are dismissed as reactionary.
And they become more serious because only parents seem interested in highlighting the consequences of the misinformation.
When divisions arise in groups with a common goal, they waste much time and energy. Ultimately, all autism groups share the same concern in persuading politicians to increase the investment in the treatment of children. Current divisions could easily be dissolved if it was accepted that parents who want science-based treatment have a legitimate case, that they have not been hood-winked into wanting something that has no evidence to support its claims, and that their enthusiasm for the scientific method is not to be equated with following a belief. Their voices need to be heard and respected. This report should help them. While correcting the misinformation about ABA, though, it goes beyond concerns about what is the most effective treatment. It gives an insight into how these families are being disadvantaged on a number of levels by a system that struggles through lack of training and investment.
There are many dedicated professionals in the community who care for these children and their families. The voices of parents in this report will add impetus for steps that will enable these professionals to help them.
ria_autism_report.pdf | |
File Size: | 6028 kb |
File Type: |
peatresponse.pdf | |
File Size: | 295 kb |
File Type: |