| Interviews |
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| Written by Administrator |
| Monday, 26 April 2010 18:51 |
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We have a number of interviews available:
An Interview with Dr. Gina Green and Dr. Michael Dorsey
More formal and widespread recognition of Behavior Analyst practitioners will like produce substantial positive effects. Most notably, consumer protection could be enhanced if, on a state level, the practice of Applied Behavior Analysis was delegated to qualified professionals. Additionally, such recognition may assist efforts for third party reimbursement for ABA services.
There are differing perspectives regarding the mechanism by which a more formal recognition of Behavior Analysts should be achieved. Specifically, one option includes licensure for Behavior Analysts (as is available and customary within other professions). Another option includes state recognition of the BCBA® credential, thus reserving the title of “Behavior Analyst” and the practice of applied behavior analysis for those who are board certified.
At the annual business meeting of the Autism SIG at the ABAI convention last May, we were fortunate to hear from Dr. Gina Green (APBA) and Dr. Michael Dorsey (ABAI Practice Board), who offered some important considerations that may assist us in thinking critically about this topic. As the variables that may affect pursuit of any legislative actions and the timing thereof will likely differ from state to state, we encourage members to stay informed about such considerations and to work with their state chapters to develop strategies for successful outcomes. To this end, we invited Dr. Dorsey and Dr. Green to participate in the following interview, and sincerely thank them both for sharing their perspective on this important issue. As you will see below, Dr. Dorsey’s responses are preceded by a statement from Dr. Patrick Friman, current President of ABAI.
Lori Bechner, M.A., BCBA, President, Autism SIG David Celiberti, Ph.D., BCBA-D, President, PPP SIG
Part I:
Please discuss the advantages of licensure for behavior analysts.
The rhetorical structure of most communication pulls diverging points of view to oppositional poles, virtually willy-nilly. Unless one carefully crafts the communication of an idea that is not entirely consistent with one expressed by another person, the emergent structure of the exchange about those ideas will shape the one so that it appears entirely inconsistent with the other. The first idea is black so the other must be white, so to speak. However, the perspective one attempts to convey is much more often gray than it is black or white. And that is the case with licensure versus certification. ABAI promotes licensure but in doing so, it is not attempting to demote certification. Consistent with that perspective, in the exchange that follows, Mike Dorsey, chair of the ABAI Practice Board, supplies his view of licensure, as requested by the Autism SIG, and his intent is to inform readers about licensure so that they may then use the information supplied to aid in the decision to seek licensure or certification in their own states.
Patrick C. Friman, Ph.D., ABPP President, ABAI Michael Dorsey: There are several advantages for the licensure of Applied Behavior Analysts, among them are an enhanced possibility of securing third party payment for services, increased protection of the profession of Behavior Analysis, and an expanded ability to objectively define the scope of practice of the profession of Behavior Analysis. However, one reason stands-out well beyond any of the others, that being the protection of consumers of ABA services. While no system is infallible, a state’s Board of Professional Licensure has the staff and legal authority to respond to complaints by the general public (or other Applied Behavior Analysts) of unethical practices by those who are licensed or to prohibit non-licensed individuals from claiming to hold such qualifications. The investigation of such complaints must be conducted at the local level, interviewing those involved as well as the collection and review of supporting documentation from the complainant, the accused, and any witnesses. Investigators from the state board would also be on-site throughout the process of conducting such investigations. Additionally, once an investigation is completed, there may be a need for a formal hearing (which can take several days and include legal representation for both sides), at which the plaintiff, the accused, and investigator would all present their cases to a hearing panel comprised of licensed Applied Behavior Analysts. More generally, licensure of any profession maximizes the identity and independence of practitioners who are licensed. Gina Green: Depending on several factors -- the wording of behavior analyst licensure laws and the rules for implementing them, other relevant state laws (such as the licensure acts of other professions), and most critically, who is responsible for managing the behavior analyst licensure program for the state -- licensure may provide some protection of behavior analysts’ right to practice, afford behavior analysis some parity with other professions, help behavior analysts qualify for third-party payments, and help protect consumers of ABA services through state licensure board enforcement of ethical and disciplinary standards. May is the operative word here, because even when licensure laws and rules are very well-written and behavior analysts control their implementation, there are no guarantees; government regulation is subject to many political and economic pressures. It is also important to note that licensure is not necessary for and does not guarantee third-party payment, because other types of laws often come into play. Professionals who hold legitimate national certifications, including Board Certified Behavior Analysts and Board Certified Assistant Behavior Analysts, are currently being reimbursed for providing services in many U.S. states (e.g., SC, FL, TX, ME, LA).
Please discuss the disadvantages/risks of licensure for behavior analysts.
Michael Dorsey: The primary disadvantage/risk of licensing the profession of Behavior Analysis is not in the adoption of the license standard per se, but in the preparation required leading up to the laws being put into place that establish the licensing standards within a given state. The ABAI Practice Board has presented at numerous state and national conferences on the subject of Legislative Advocacy, always stressing that State Chapters should be cautious in their decisions to move forward with a decision to advocate for Licensing, and then only with the explicit and fully informed support of their members. It has been in those states where independent advocacy groups and/or other external entities have authored the state licensing legislation in the absence of involvement of the State Affiliated Chapter, or where no such chapter exists, that problems have arisen. Examples include Nevada where an autism advocacy organization included a licensing provision on their insurance mandate bill, and in Kentucky where no state ABAI affiliate chapter existed and there are less than 40 BCBAs exist to serve a population of over 4.5 million and approximately 6,361 children with Autism (National Institute of Neurological Disorders and Stroke).
Gina Green: Many risks are inherent in the fact that each state or other governmental body must adopt its own law to license behavior analysts. Getting any law passed is a risky enterprise requiring an investment of time and resources that may not pay off. Political and legislative processes are uncertain, and most bills die in committee, even those that are initiated by entities with lots of resources, supporters, and political savvy. Behavior analysts in most locations are lacking one or more of those, which increases their risks. Initiating behavior analyst licensure bills can easily backfire, because groups that are large, rich, and experienced with legislation are likely to kill the bills, making it more difficult for behavior analysts to get bills passed in the future. Worse, those groups might get the bills amended so that they – not behavior analysts -- control the licensure program, or so that people with little training in behavior analysis are licensed to practice behavior analysis while those who have legitimate training (e.g., BCBAs, BCaBAs) have difficulty qualifying for licensure. The ramifications for ABA practitioners and consumers should be obvious.
If a law to license behavior analysts is adopted, a state board will control the licensure requirements, fees, practice standards, enforcement, etc. Operating a licensure program is costly, so rather than set up a new board to regulate a small number of behavior analysts, the state may assign that responsibility to an existing board that includes few or no behavior analysts. The costs of operating the board will be passed on to licensees, and ultimately to consumers. Those consumers may not be protected from unethical and incompetent practitioners, because enforcement is labor-intensive and expensive.
Because licensure laws tend to vary, licenses may not be portable across borders. A behavior analyst who is licensed in one U.S. state, for instance, might have to get licensed anew when she moves to another state or country. That is not the case with national/international certification, like the BACB’s. In short, there is substantial risk that pursuing licensure at this time will restrict behavior analysts’ right to practice as well as the quality and availability of ABA services.
Based on recent events that have occurred in different states, what important lessons have you learned? How has your organization’s position evolved?
Michael Dorsey: One of the many lessons learned over the past year has been recognition that ours is far from a unified profession at either the state or national level. The membership of ABAI and that of the various state/international affiliate chapters are not consistent – with state chapters having many members who are not members of ABAI and many members of ABAI who are not members of their respective state chapters (a fact also true with respect to the membership of ABAI and the Certificants of the BACB). This places a tremendous burden on both the state chapter as well as ABAI to identify their respective constituents – especially in matters where there is disagreement relative to issues that may affect the practice of Behavior Analysis in a given state. This is compounded with at least three independent voices claiming to speak for the profession at a national level. All of this leads to a great deal of confusion and anxiety on the part of the many Behavior Analysts working to serve their clients and earn a living. It is also highly confusing and disruptive to the ability of our profession to convince stakeholders, legislators, etc. that they should support one versus the other’s agenda/position on matters of importance to our constituents. ABAI is resolved to work toward a solution to this problem and will continue to support both the state chapters as well as ABAI membership.
Gina Green: Sadly, many of the problems that we anticipated might result from premature promotion of licensure for behavior analysts have become reality. A PA law licenses people as “behavior specialists” and makes them eligible for reimbursement for providing “ABA” services even if they have no training in behavior analysis. In four states (AZ, NV, MO, KY), psychology boards will oversee the behavior analyst licensure programs. It is unclear whether BACB certificants will readily qualify for licensure in those states, what the licensure fees will be, and how those laws will affect the practice of ABA. A MA bill would have put behavior analyst licensure under the control of the state psychology board; fortunately, it did not pass.
A happy lesson was that two states (OK and WI) had just the right conditions in place to make licensure of behavior analysts feasible, even though (or perhaps because) the numbers of behavior analysts were relatively small. Speculatively, critical ingredients might have included a need to identify qualified providers to meet mandates for health insurance to cover ABA treatment for autism, knowledgeable behavior analysts in key positions in state government, regulators who recognized the strengths of the BACB certification program and the cost-effectiveness of adopting BACB certification as the foundational requirement for licensure, and a lot of hard work by behavior analysts and their allies. In both cases the behavior analyst licensure program is managed by a state agency, not another profession’s licensing board.
From the outset, APBA’s position has been that both BACB certification and licensure are appropriate and complementary credentials for behavior analysts. Certification has the distinct advantage of being controlled by our profession, whereas licensure puts much of the control of the practice of ABA in the hands of government regulators and other professions. It is still our position that at this point in our field’s development, it is less risky for behavior analysts in most locations to secure recognition of the BACB credentials in other types of laws and regulations than to pursue licensure laws. Where careful evaluation reveals that conditions make licensure feasible or desirable, the BACB credentialing process should serve as the foundation.
What are some of the risks associated with the various organizations not working in tandem?
Michael Dorsey: Perhaps the more appropriate question here is “What are the risks of three independent organizations acting to represent the profession of Applied Behavior Analysis?” While all three organizations are clearly acting in good faith and with the best of intentions, the fact is that their respective leadership makes decisions related to critical issues and takes public positions based on well meaning deliberations about the issues at-hand without first conferring with the other two organizations and producing unified position statements. This has led to public positions that are often diametrically opposed to one another (e.g., the issue of licensing), serving to confuse both the professionals in the field as well as our stakeholders. The results of such disparity are fairly clear, and often have severe detrimental effects. The primary risk is to those we serve, by confusing the consumers of service, regulatory authorities and funding agencies. Second is the negative impact on the members of the profession and their ability to successfully practice their craft and depend upon their ability to earn a living. Other unintended consequences include: 1. The inability for any one organization to effectively advocate for their position legislatively as long as one or both of the other organizations disagree with their position; a. “Legislators have a very long memory and do not want to take sides in an internal disagreement” (Scibak, 2010); 2. The likelihood that, while we cannot present a united front publically, other professions may encroach on the Scope of Practice of our profession and claim ABA as their own.
Gina Green: APBA and the BACB have worked in tandem on a model licensing act (see www.BACB.com) and a position statement on licensure (see www.apbahome.net). The two organizations have also worked closely with one another and with behavior analysis associations that have requested our help on licensure legislation in AZ, MA, MO, and WI, as well as laws to recognize the BACB credentials in several other states. Those and other public policy collaborations were deemed effective by behavior analysts in those states (APBA members can read about some of them in archived issues of the APBA Reporter at www.apbahome.net). Unfortunately, ABAI’s adoption of a different model licensing act and a different approach to licensure has made the quest for public policies to support the practice of ABA more difficult than it would be otherwise. Some of the difficulties that arose in CA, CT, and MA were documented in previous issues of this newsletter and discussed in a “town hall” meeting last May in San Antonio.
Do you envision that the various organizations will be able to work more collaboratively in the future? In your view, what is needed for that to happen?
Michael Dorsey: I certainly do. While I believe that the BACB should be neutral in its’ mission, legislative advocacy, and organizational structure, I believe that ABAI and APBA could (and probably should) productively unite as a single organization. From the original ABAI Business Meeting in Chicago during the 2008 annual conference, where the need for explicit support for the practitioner members of ABAI was so clearly articulated to the members of ABAI Council by a group of active, practice minded members, ABAI has worked to recognize and provide the support for practice advocated for during this meeting. The formation of ABPA clearly served as a motivating operation for ABAI in making these significant changes in practice and structure, and became a successful approach to bringing practice issues and options to the forefront of ABAI Executive Council. While there are still details to be resolved in the structure and operation of the Practice Board and its’ relationship with both the Executive Council and the members of ABAI, it appears to me that the utility for two independent bodies is passing and benefits of uniting them are mounting. Both groups have an array of highly committed and talented members who together could produce far more beneficial results for the profession than they can by working separately and without a coordinated effort.
Gina Green: From its inception, APBA has expressed its desire to collaborate with ABAi, the BACB, and other organizations that are interested in the practice of ABA. We engaged in extensive discussions with ABAi in the past, remain open to reasonable proposals for collaborating with ABAi, and are hopeful that our recent requests for dialogue will bear fruit. Revision of the ABAi model licensure act to reflect requirements that are realistic for current conditions and that are based on BACB certification requirements, coupled with an approach to public policy work that acknowledges the risks of aggressively promoting licensure and defers to knowledgeable behavior analysts “on the ground,” could help foster collaboration, or at least reduce divisiveness. We will continue to read and listen to ABAi’s views, and would encourage ABAi leaders to learn about APBA’s public policy work by reading the Reporter, attending conference presentations, and talking with APBA leaders.
Part II
Having had the opportunity to review the responses of the other interviewee, would you like to clarify any of your statements or provide additional information?
Michael Dorsey: Thank you to the Autism SIG for the opportunity to participate in this enlightening dialogue. The statement made by Dr. Friman especially interested me, in which he suggested, “the emergent structure of the exchange about ideas will shape the one so that it appears entirely inconsistent with the other.” However, I disagree with his premise in this specific context. I found many of Dr. Green’s comments highly consistent with both the content and sprit of my remarks. As noted by Dr. Green, “from its inception, APBA has expressed its desire to collaborate with ABAI, the BACB, and other organizations that are interested in the practice of ABA.” My only disagreement with this statement is the use of the term “collaboration,” rather than “unification.” As I noted, having multiple organizations working independently to establish policies/position statements relative to the direction of the profession can be counter-productive and harmful. There is much to do, with the emergence of third-party insurance billing, the need to develop a fully functional Code of Ethics for Behavior Analysts, responding to the many legislative initiatives at both state and federal levels (in cooperation with state affiliated chapters), working to create standards of practice, providing leadership in the Research-to-Practice application of innovative scientific work, conducting the many productive conferences that provide our membership with training needed to enhance their practice, and taking the lead in the development of “Centers of Excellence” currently being discussed within the insurance industry. We need to come together to better serve our members.
Gina Green: APBA favors a broad, long, pragmatic view of practitioner credentialing that looks beyond the psychology licensure model. Key points: • Of course we agree that consumer protection is paramount. Research shows, however, that (a) licensure has little effect on consumers except to decrease access to services and increase costs (M. Kleiner, Regulation, Fall 2006, 17-21); (b) psychology licensure boards actually receive few complaints and take few disciplinary actions (B. Van Horne, Professional Psychology: Research and Practice, 2004, 35, 170-178). • Licensure is the most restrictive means of regulating a profession, but is not universally more rigorous or prestigious than the certification procedures used by many professions. • Accepting at face value assertions that ABA providers must be licensed can seriously jeopardize our field. We have learned to ask those who make such assertions to cite the law mandating licensure (often they cannot), and whether the term “license” encompasses legitimate professional certification or registration as well as licensure (often it does). • APBA’s experience has been that problems with licensure legislation (e.g., other professions attempting to control ours) are not confined to situations where someone other than behavior analysts authored the legislation. • The BACB functions much like a licensing board. It works with local entities on disciplinary matters, and recently strengthened its disciplinary standards and authority. Writing the BACB credentials into public policies and working with the BACB is therefore efficient and cost-effective for governments. It also keeps control of the practice of ABA in the hands of our profession. Michael F. Dorsey earned his Ph.D. from Western Michigan University in 1979. He is a licensed Psychologist and Board Certified Behavior Analyst. He a Professor of Education and the Director of the Institute for Behavioral Studies at Endicott College. Dr. Dorsey is the Chair of the Practice Board of the Association for Behavior Analysis International. During his career, Dr. Dorsey has served on the faculty of several prestigious universities and colleges including The Johns Hopkins University School of Medicine. He has authored/co-authored many professional publications, including the development of the Functional Analysis methodology. Dr. Dorsey’s first experience in consumer advocacy came in 1978, when he assisted with an Amicus Curiae Brief submitted to the United States Supreme Court in the Connecticut ARC Case. Dr. Dorsey has been a Gubernatorial appointee of the Developmental Disabilities Councils of both Florida and Massachusetts, and chaired the Massachusetts MDDC Governmental Affairs Committee for over six years. In 1992 he served as a US representatives to the First Papal Congress on Developmental Disabilities. Dr. Dorsey is a registered Lobbyist in Massachusetts, and has co-authored several bills related to the practice of Applied Behavior Analysis. He has testified on numerous occasions at both the federal and state level concerning proposed legislation, policies and budgets, and as an expert witness in Bureau of Special Education Appeals (BSEA) cases, as well as in various Probate, Superior, and Federal Court cases involving the education and treatment of individuals diagnosed with developmental disabilities.
Gina Green is Executive Director of the Association of Professional Behavior Analysts, a consultant, and part-time Lecturer at San Diego State University. She served two terms on the Behavior Analyst Certification Board, and on several BACB committees and expert panels. Dr. Green is a long-time member of the Autism SIG, and has served the Association for Behavior Analysis as President, Experimental Representative to the Executive Council, chair of the Professional Standards Committee, and member of the Accreditation Board. She has also been active in the California Association for Behavior Analysis (President, Board of Directors, Conference Co-Chair, Public Policy Committee), the Cambridge Center for Behavioral Studies (Board of Trustees, Autism Advisory Group), and the advisory boards of several autism programs and organizations. She is a Fellow of the American Psychological Association, the Council for Scientific Medicine and Mental Health, and the Association for Behavior Analysis. Psychology Today named her “Mental Health Professional of the Year” in 2000. In 2005 she received an honorary Doctor of Science degree from The Queen’s University of Belfast, Northern Ireland for her work in autism. Dr. Green has been involved in public policy work and legal advocacy on behalf of ABA practitioners and consumers for many years, most intensively during the past 5 years as she has worked on legislation to require health insurance to cover ABA treatment for autism spectrum disorders in 20 U.S. states, and on other types of public policies governing the practice of ABA in 9 U.S. states and three other countries.
Hospital admission for individuals with autism (An interview with Eileen Gehringer, Nurse Manager, and Dr. Michael Marano, Program Director in General Surgery)1. Please tell us a little about your role in the hospital. An Interview with Andy Bondy, Inventor of PECS1. We are in a sea of confusion regarding the use of the term Verbal Behavior. Can you summarize what the issues are in the field of ABA (and its application to teaching people with autism) regarding how the term Verbal Behavior is used and what it refers to? Why is there so much confusion? Collaboration between speech therapists and behavior analysts (An interview with Anne Holmes, M.S., BCBA and Joanne Gerenser, Ph.D.)1. What do you see as the main point of agreement between the disciplines of ABA and speech? Evaluating treatment options (An interview with Gina Green, Ph.D., BCBA)
1. Please tell us about how you first become involved in raising concerns about pseudo-science, particularly your efforts to challenge proponents of facilitated communication.
Thank you very much for sharing your experiences with the SIG membership. Your convictions, suggestions, and perspectives are invaluable.
Description of the Asperger’s College Program at the Douglass Developmental Disabilities Center
By: Jane Barbin, Ph.D., BCBA1. JB: With the increased need for quality school programs serving students with autism spectrum disorders, can you describe the developments which led to creation of this school based Asperger Program, which I understand opened its doors in August, 2006? KA: The Asperger Program’s genesis rests with a group of innovative, regional parents who recognized a striking disparity between the needs of this population and the availability of effective, comprehensive educational programming. Across several months, this group organized their efforts to include investigation of other programs in the country, research into possible local schools to develop the program, and contacts with local professionals who would support the campaign. This group initially approached Ivymount School to develop the program. Ivymount reviewed the results of this group’s work and determined that students with Asperger’s Disorder represent a population in great need and one that Ivymount could serve well. 2.Was this program based on similar educational models in regards to philosophy and student population served? Likewise, are there unique features to the program that set it apart? While other programs do specialize in serving this population, to my knowledge, there was not a model program that we could mirror in the development of our Asperger Program. However, we have adopted educational practices that are commonly found in programs that target this population. These include a formalized social skills curriculum and a challenging academic curriculum. Features that are unique to our program include our emphasis on the development of a replicable, model program; data-based decision making; social skills programming integrated 3.Since the program is focused on meeting the educational, social and emotional needs of students with an Asperger’s diagnosis, can you describe the program’s mission, staffing, and a typical daily schedule for students? The needs of students with Asperger’s Disorder require that we provide a program that fosters each student’s ability to demonstrate optimal and independent participation in self-directed activities, social relationships, educational futures, and occupations. This is the mission of our program. Each of our two classrooms of 8 students is staffed with one head teacher and two assistant teachers. Additionally, we offer one day each of occupational therapy, speech 4.You mentioned that a social skills class is held daily for students in the program and that sounds like a truly unique component for this program. Can you elaborate on the content and delivery of this component? What is involved and who delivers the service? The content of the social skills class includes conversation skills, emotional regulation, self monitoring, group/team participation, problem solving, and other skills that we identify through observation of the students. One of the purposes of this class is to be responsive to the needs of the students. The social skills class typically involves a short lesson that we teach to the group and an activity that we create to make the lesson more salient. From there, the classroom team ensures that we integrate that social skill into the context of the school day. Any member of the educational team can be involved in the social skills class, including the psychologist, speech/language pathologist, occupational therapist, and/or head teacher. 5. I understand that the program seeks to use empirical research to develop educational and therapeutic practices. Can you describe how this will or has worked so far? Unfortunately, there exists a paucity of intervention studies that examine the effectiveness of educational and therapeutic practices for this population. For every aspect of our educational programming, we have first explored the scientific literature to determine if specific techniques or academic approaches have been researched. When research does exist, we always use the results of that research to guide our decision making. Once we implement a technique or approach with a student, we collect individual performance data to evaluate intervention effectiveness. When research study data do not exist, we create a plan to examine the effectiveness of that technique or approach to help guide our decision making. 6. It is nice to see research in practice, as the program seeks to also contribute to the limited research available at this point. How do you see the program measuring success for students enrolled in the program, given the complex needs often associated with an Asperger’s diagnosis? There are significant complexities in meeting the needs of students with Asperger’s Disorder. The program’s success is best measured by the progress demonstrated by the students we serve. We believe that it is essential to measure success at several levels. The first level at which we measure success is data that reflect whether a student has mastered a skill in the Ivymount school setting, which is highly structured and controlled. It is then critical to obtain data that reflect whether a student generalizes a skill to other settings (e.g. home, community). We plan to facilitate and measure generalization in two ways: within the context of the school day and by working with parents/caregivers. Within the program, we plan to create generalization opportunities by developing partnerships with other schools in order to introduce opportunities with other, typically developing peers. We also plan several field trips that will introduce a variety of mainstream contexts that enhance our academic curriculum while affording our students the opportunity to engage with other peers. We are currently finalizing the development of our home support program. Currently, our plan is to offer a variety of parent seminars and develop partnerships through which parents help us better support generalization and understand the performance of our students in their home settings. We believe that both parent and student report offer further evidence of whether or not skill mastery is perceived from the individual or caregiver perspective. We consider both self-report or caregiver report related to performance and satisfaction. Ultimately, the success of our program will be measured by the ability of our former students to demonstrate meaningful and independent participation in self-directed activities, social relationships, educational futures, and occupations. 7. Those are such practically relevant and meaningful outcomes you are seeking. Can you elaborate further on what is meant by participation in selfdirected activities, social relationships, educational futures and occupations? Are we talking about gainful employment, close interpersonal relationships, and the like? Will this be measured in a longitudinal fashion, with long term outcomes as the ultimate goal? By self-directed, we mean that each individual has the right to choose what becomes a part of his/her life. The right to choose is a complex issue because it is not enough to simply say to a person, “These are your choices.” It is critical that an individual be able to make an informed choice. In order to make an informed choice, an individual needs to be able to identify potential consequences (both short and long term) as well as how each option aligns with his/her personal values and beliefs. If a person has difficulty predicting possible consequences, then he/she should learn the important questions to ask. By self-directed activities, we mean that we want each graduate of our program to be able to select the activities that occupy his/her day, including leisure skills, group affiliations, and daily routines. By self-determined relationships, we want each graduate of our program to be able to include the types of relationships and the people he/ she desires in his/her life, including romantic relationships, friendships of different levels (e.g. acquaintance, close friend), and work relationships. By self-determined educational futures, we intend for each graduate of our program to be able to pursue an educational program at a college or university and to also select an educational degree. Finally, we desire for each of our graduates to participate in a career that he/she finds rewarding and in which he/she finds success and the means to support living in the community. These are long term objectives that we intend to measure through follow-up with our graduates. In summary, a success for our program would 8. Though the program is quite new and this may be a bit premature, do you have ideas or plans for where you would like to see the program grow in the future? We plan to continue developing a program that can be responsive to the needs of our community. We continue to evaluate the demographic information of those who investigate our program as a possible placement. We further plan to develop the program in a way that avoids compromising the integrity of our educational programming. We also plan to contribute to the research base by reporting on the efficacy of our educational and therapeutic practices. Eventually, we plan to have a model program that can be replicated and shared with others seeking to serve this population of students. 9. Katie, it sounds like your focus on evidence-based practice and meeting the needs of individuals with Asperger’s Disorder is at the crux of the program’s mission. I am sure that as a group we can agree that establishing and maintaining program integrity is a difficulty yet worthwhile endeavor. Best of luck as your program develops and evolves. Thank you for sharing information on the Ivymount School Asperger Program with the Autism SIG. At some point in the future, we would like to hear how your program is developing and the kind of outcome data you are obtaining. Trends, Obstacles, and Possibilities in the Application of Behavior Analysis for Adults with ASD:An Interview with Peter Gerhardt, Ed.D.
David Celiberti, Ph.D., BCBA
1. First and foremost, thanks for the opportunity to talk with you about adults with ASD. There are so few people who work with that segment of the population for such a long period of time. How would your characterize the climate 20 years ago for adults with ASD?
In a word, dismal. While the late 1960s saw the beginning of research and services for younger learners with ASD, a recognition of the needs of adults with ASD really did not begin to attract much professional attention until the late 1980s/early 1990s. Now that does not mean that there were not programs designed to meet the needs of adults with ASD in existence before that, just that they were few and far between.
2. What are the most positive changes? And for what areas has the progress been disappointingly slow?
The most positive changes have been the recognition of both the complexity of good, comprehensive transition planning and subsequently, the critical importance of having a well designed and supported “transition to” environment. In addition, the developing technology in support of antecedent control of challenging behavior has had a huge impact on services and interventions for adults with ASD. Lastly, I would have to point to the trend within ABA and autism communities to discuss quality of life (e.g., Bannerman, et al., 1990; Greene, et al., 2005) – which can be defines in individually determined, measurable terms – more as a product of good transition planning and intervention than as a characteristic of the intervention itself. Where progress has lagged has been in the actual delivery of services that incorporate these positive changes. Transition planning is still often implemented without any sense of “where” or “what” the individual learner is transitioning to. The vast majority of leaders with ASD graduate from school into a world of limited or inappropriate services and subsequently, greatly restricted options or opportunities for work or a real life in the community at large, that is, a life of quality.
3. Your points are very well taken. I often see the lack of foresight even at the early intervention level as some children receive training in skills that are not going to be relevant to them once they enter public school, but an even greater concern is the failure of many providers to address skills that would be surely needed. In your view, what have been some of the obstacles that have impeded greater progress?
The greatest has been the lack of any legislative mandate to provide adult supports and services. But, realistically, if we wait around for that we are going to lose another generation of learners to, what one parent described to me as a post-21 purgatory. What we need to do to more effectively partner with the business community for jobs (we are, after all, working to provide them with potentially qualified and competent employees) and better identify existing community services and resources that might support adults. It won’t always be possible but I do think we have the luxury to wait around for additional government support (as ethically appropriate as additional government support might be) and so we have to get innovative. Honestly, however, this disparity between childhood and adolescent/adulthood research and services, while disheartening, could hardly be called unexpected. Professional interest in the needs of young learners with ASD is generally assumed to be much higher than that for older learners. Among the reasons for this differential emphasis may be greater funding for childhood (educational services) greater pay and professional respect for staff in educational services, a greater expectation of positive outcomes with younger learners, a more accessible pool of research candidates (i.e., schools), and an absence of training in the characteristics and needs of adolescent and adult learners (Or, as put by a colleague, “Part of the problem is that nobody goes to college to work with adults with autism. Kids with autism? Sure. Adults with autism? No.”) We have a bit of an up-hill climb before us, it seems.
4. The partnership with the business community sounds like a wonderful initiative and would certainly prompt many of us to teach those skills that would make our young adults more marketable for those types of positions. One of greatest misconceptions is that ABA “does not work” for adults with ASD. Have you encountered this?
Last year I sat at a meeting about adult services where I was informed by one of the folks in attendance that there was “No evidence to support the use of ABA with learners with autism beyond the age of 12.” After I pulled myself off the floor, I had to point out that discrete trial instruction is not synonymous with ABA and that there is a vast body of research supporting the efficacy of interventions derived from the principles of ABA for learners of any age. I guess at this point I shouldn’t be, but I am astounded by the level of misunderstanding and misconception that exists not just around ABA, but also with reference to adults with ASD not being capable of life-long learning.
5. How should we respond to this and other related misconceptions that separate adults from scientifically validated intervention?
I do think that we in the ABA community have to take some of the responsibility for that though. The greatest success that ABA has had in translating our technology to the public at large has been with the general acceptance of the terms “reinforcement” (which is generally mis-defined by the public at large) and “time-out” (which is generally misapplied by the public at large). But, as noted, the processes behind the terms remain distinct from the terms themselves so the extent to which this could be called a “success” is pretty questionable. We simply, as Richard Foxx has said, have to get better at “translating the covenant” if evidenced based procedures are to become the norm, rather than the exception for adult learners with ASD.
6. What are some broader clinical, contextual, or ethical considerations important when assessing and treating adults with ASD?
I think to answer that I would have to write an entire book. Still, let me say this. Last year, I was speaking with a colleague about some of the issues related to social skill instruction with older learners with ASD. During this discussion I noted that I thought effective social skill instruction began with a functional analytic perspective of individual skill needs. By that I meant that it seems important to understand the functional characteristics of a particular social skill for a particular learner if instruction is to be effective and generalize across environments. (In other words, will the learner find the naturally occurring response to the skill sufficiently reinforcing to maintain the skill outside the conditions of instruction?) This colleague commented as to how this “person-centered” approach to assessment and instruction is central to behavioral analytic interventions and how sad it was that the term “personcentered” had come to mean almost “anything but ABA”. “There is not a field more person-centered than ABA”, she stated. I guess what I am trying to say is that if we are to truly support older learners to a desirable, active, and engaged life of quality, then it is the individual that guides the curriculum, programming, interventions, and supports. If we do that, we also tend to address the broader clinical, contextual, and ethical concerns.
7. Great answer. It reminds me of when Skinner said that the rat is always right. So many of us work with young children who are not “best outcomes”, many of whom will come in contact with individuals who specialize in adult treatment. What are some “mistakes” that we are making with respect to treatment and goal selection? Aresome of us spending too much time on skill “A” and not enough on skill ”B”?
This is a big issue. I often meet adults who can do a math worksheet but can’t shop for groceries or use a public restroom independently and, at least in my opinion, that is a problem. Beyond the challenge of, at times, less than appropriate instructional goals, there is a second challenge in that instruction in life-relevant skills is rarely provided with the instructional intensity necessary. For example, let’s say 1,000 instructional trials (i.e., 50 sets of 20) were necessary to teach a young learner with ASD all 64 colors in the Crayola box. It is now a few years later and the goal is to teach the learner how to get his own lunch at a fast food restaurant. How many instructional “trials” are generally provided? It has been my experience that one/week is something of the norm. Well, if we provide one trial/week for 50 weeks/year it will take us 20 years before our learner has had the same number of instructional trials as it required for him/her to master the much simpler skill of color identification. It just seems to me that we need to start thinking about instructional intensity and how that may impact the development of increasingly more complex, life relevant skills and skill repertoires.
8. Well certainly one solution to address that issue is to target these skills sooner than later. Of course, those efforts should incorporate a number of strategies to promote generalization and maintenance. I see so many young adults with skills that do not generalize well because the original instruction was too circumscribed with respect to format, setting, materials, etc. There are many school-based ABA programs interested in developing adult services. What advice would you give them? What are some common mistakes made by these programs?
The first bit of advice is to be prepared to raise money to supplement the program if you want the program to be of quality. Second, train staff in the needs of adults and then, train them again. Third, focus on capabilities in terms of job development and skills deficits in terms of instructional goals.
9. Many behavior analysts who are working with an aging child population are meeting new challenges. What resources would you suggest?
I would send people to Dennis Reid’s work in the areas of staff training and quality of life, Paul Wehman’s work in terms of comprehensive transition planning consideration, and Lusielli & Cameron (1998) Antecedent Control as a good start.
10. From a research standpoint, can you list out just a few of the more pressing topics warranting empirical investigation with respect to the treatment of adults with ASD?
a) Effective methods for training employers and coworkers to promote social inclusion on the job.
b) Issues related to sexuality instruction including sexual safety and abuse avoidance/prevention.
c) Effective assessment and intervention for co-morbid mental health concerns.
d) Issues related to good primary medical care for learners with ASD.
e) How do we best assess individual characteristics related to the development of appropriate residential programs and supports?
f) Issues related to the training and retention of adult services staff.
g) Family support in adulthood.
h) Issues related to quality of life assessment, personal life preference.
i) Social skill development and support.
j) Instruction in community referenced safety skills.
k) Systems analysis of effective interventions and programs.
11. That is quite a number of dissertations ready to be explored. Thanks for your time and insights.
Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990). Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many doughnuts and take a nap. Journal of Applied Behavior Analysis, 23, 79-89.
Carolyn W. Green, Dennis H. Reid, Jeannia H. Rollyson, & Susan C. Passante (2005). An enriched teaching program for reducing resistance and indices of unhappiness among individuals with profound multiple disabilities. Journal of Applied Behavior Analysis, 38, 221-233.
Interview Questions on Sexuality for Peter Gerhardt and Bobby Newman1. Sexuality is hard for people to discuss in any context. For people with disabilities, it is often entirely overlooked. Yet, it is an important dimension of life. What can we do to help educators and families to become more comfortable in acknowledging and discussing the issues, needs, and challenges regarding the sexualityof individuals with autism? Probably the most important thing we can do is emphasize that the sexuality education, at its core, is safety education. Instruction in such areas as public/private discriminations, closing and locking bathroom stalls and doors, who can and who cannot help you with your menstrual care, and body privacy are basic safety skills and should be presented as such. This is true even in the area of sexual behavior. Instruction related to sexual behavior is generally relegated to the area of, for example, safe masturbation rather than to instruction in enjoyable masturbation (most individuals figure that part out on their own). For individuals who may be interested in a physically intimate relationship with another person this issue of safety still remains paramount with attention to such issues as personal respect, consent, values, relationship development, dating, safe sex, and avoiding dangerous or potentially abusive situations. 2. What do you think are the most common misconceptions regarding the sexuality of people with autism? Well, when we do actually approach the subject of sexuality we do so almost exclusively from a heterosexual orientation leading me to believe that there is a misconception that states “in terms of sexuality, people on the autism spectrum are entirely heterosexual.” In reality, if 5-10% of the Neurotypical population is gay there is no reason to think that the same would not be true for individuals with autism. As such, this needs to be part of the discussion and, as necessary, instruction. In addition, there is a very common misconception that people on the spectrum are unable to develop mutually satisfying emotional relationships as a result of their autism. While some of the parameters and intricacies of their relationships may be idiosyncratic they are, in many cases, loving, caring, and valid. 3. What do you think are the most important skills to teach individuals with autism that are relevant to sexuality? Obviously I look to safety skills as being the most important. Particularly given the emphasis on inclusion in the classroom and the community, sexual safety skills should be a part of everyone’s IEP. In addition to some of the skills note earlier, this would also include direct, intensive instructional emphasis on increasing independence in the area of self care and person al hygiene. The more independent individuals are in these basic skills the safer they are from potentially abusive situations. It seems like social skills and sexuality are both very important, and are intertwined. Aberrant sexual behavior is socially unacceptable, and can have severe consequences. What can we do to reduce the likelihood that individuals with autism will have negative social consequences regarding sexual behavior? It is important to understand that ALL sexual behavior is social behavior. Even masturbation has a social component which is, quite simply, that you do it in private. In addition, we live in a society that has a zero tolerance policy for inappropriate sexual behavior and the consequences, both social and legal, can be quite severe. The best thing we can do is be proactive. Teach such things public/private discriminations (e.g. wearing a robe after bathing, pulling up your pants before you leave the bathroom) early as it will be much easier to do so then, before the behavior has an extensive reinforcement history. If problems arise (e.g. masturbating in class) address them as soon as possible to avoid having the behavior reinforced in appropriate environments. With more cognitively capable individuals, discuss these issues in a straightforward and relaxed way including the possible negative consequences of not following the social rules. 4. What teaching methods or resources are most effective for instructing individuals on the autism spectrum in this realm? The same behavior analytic interventions we use to teach other skills can be used in the area of sexuality education. Some examples would include picture schedules, shaping, cognitive rehearsal, social stories, role play, video modeling (but not of nudity or sexual situations) and even discrete trial instruction. 5. Do you think sexuality should be an emphasis of the curriculum in childhood, adolescence, adulthood? What skills would you target at what ages, and why? First, sexuality instruction needs to be a truly integrated and combined effort between the family and the school. In fact, while perhaps 15-20% of the relevant skills can be taught at school the rest can, and should, only be taught at home. Having said that, some content areas at different stages of an individual’s life might include (but not be limited to) the following: 6. What do behavior analysts have to offer in this curricular realm? How are we uniquely suited to address these issues? A significant challenge is that there is currently little, if any, intervention research in the area of sexuality and individuals on the autism spectrum. There are surveys and descriptive articles but not research. And while some research exists addressing the needs of individuals with an intellectual disability, this is hard to generalized given the social differences between the two groups. So behavior analysts can help fill that void particularly given that despite much discussion about decision making skills in the self-determination literature there continues to be lack of evidence “supporting the effectiveness of sex education and training for persons with developmental disabilities” (Duval, 2002, p. 453), which Behavior Analysis is able to provide. Interview questions for Bridget Taylor on Social Skills
Practitioners of applied behavior analysis can draw on a wide array of research-based strategies in addressing social deficits in children with autism. Countless examples could be listed: the use of systematic prompt fading procedures to teach statements of affection, the use of textual scripts to teach conversation, the manipulation of motivating operations to teach initiations toward peers, the use of video modeling to teach play interaction statements, and so on. No single strategy is the “most important.” Rather, there are general concepts of importance that a clinician or parent should keep in mind when selecting and implementing interventions. For example, across all strategies it is important to consider ways to increase a child’s motivation to engage in social interactions. Because — at least initially — a social interaction itself may not be “reinforcing” enough, teachers and parents will need to identify ways to pair a preferred activity or interaction with the social initiation. Thus, when teaching a child to show objects to others (an early form of joint attention), a teacher may be able to improve the overall value of the item when it is shown (e.g., by making the airplane fly higher, or by providing a sound effect) or engage in a fun, animated social game when the child shows the item. Such techniques may help the child to appreciate the benefit of showing objects to people; that, in turn, may increase the likelihood that he will show objects to people in the future. 2. How can we increase independence in social engagement and interaction? This is an important question, because children with autism often rely on others to initiate responses. Forexample, despite your best efforts at teaching, a child with autism may wait for you to greet him before saying “hello”; another may wait for a prompt before responding to his friend’s initiation to play. As such, it is important that our interventions do not unnecessarily embed teachers’ prompts in the teaching interaction. For example, providing an adult with autism a written script to use when greeting his supervisor may be less stigmatizing — and more easily eliminated — than verbal prompts delivered by a nearby teacher. Accordingly, our interventions must be designed to ensure that the learner with autism is attending to the social partner, not to prompts from his teacher. Certain research-based strategies such as script fading and video modeling reduce the need for direct teacher prompts; research has shown that the script itself or the video model can serve as prompts for the social interaction. Of course, scripts and video will ultimately have to be faded and removed, too. In one study conducted at Alpine, we taught children with autism to comment to a peer with autism about a preferred snack by embedding text from the snack package into the script: when the script was faded, the package itself (and the peer) remained as the cue to initiate conversation. 3. In building joint attention skills, how important do you think it is to use contexts in which there is an element of novelty or surprise? Why? It is definitely important to use “novel” or interesting stimuli when teaching certain responses related to joint attention. Consider, for a moment, what things you are more likely to point out and talk about in your environment: novel or interesting things and events. For example, if you notice that a new restaurant has opened in a nearby shopping area, you are more likely to point this out to your social partner and make a comment (e.g., “Hey look a new Italian restaurant! We should go sometime”) than to make an observation about a routine event or familiar things (e.g., “Look! There’s the same old sub shop that has been on the corner for ten years!”). The same principle holds when teaching children with autism to initiate bids for joint attention: use novel and interesting items so they learn to initiate bids about things that are new and exciting. In fact, in our own study we found that when first learning the responses involved in joint attention, the children with autism often made bids about common items (e.g., one learner said, “Look at the chair,” when the chair was of no interest at all). It was then that we realized the importance of using more salient items to teach children to talk about novel items, not those they experienced day in and day out in their school environments. 4. How do you think we can assess the extent to which joint attention skills truly generalize into the natural environment? Parents and others involved in the child’s daily activities could play a central role. For example, the child’s parent could arrange novel or interesting items in and around the home to determine whether the child with autism initiates any comments or bids for joint attention when he encounters the new objects. A parent or caregiver could also initiate bids while out in the community (e.g., have the parent point to an airplane in the sky) to see if the child responds to bids during everyday activities. 5. What suggestions would you give clinicians for collecting data on social skills? This would depend on the social skill targeted for intervention, and the location where the skill is being taught and assessed. Sometimes it can be important to establish “normative” rates of social responses in typically developing peers and use those rates as target goals. For example, if a child is in an inclusion environment, wemay observe a typical, age-matched peer to determine an appropriate target rate of per minute of initiations toward peers. Sometimes, however, data collection systems may interfere with teaching, and vice versa. Therefore, it may be appropriate to collect “probe” data regularly in order to assess performance. Once the data demonstrate stable performance according to the preset goal (e.g., initiates to peers at a rate of two times per minute), data could then be collected intermittently to ensure the skill is maintaining at an appropriate rate. 6. There seems to be some variability in the extent to which individuals with autism are motivated to socially engage. Do you think we have procedures that can be used to build the reinforcing value of social interaction? If so, what are they? How can they best be faded to natural contingencies? As I mentioned earlier, because there is a great deal of variability with respect to motivation, it is critical that clinicians and parents continually evaluate the extent to which a learner is motivated to engage in the interaction, and to increase motivation when it is lacking. Initially, it may be necessary to use extrinsic rewards such as preferred snacks or activities to shape social responses. At the same time, however, it is important to pair those extrinsic rewards with social rewards — an adult’s smile, a peer’s affirmation, or social praise — so that, ultimately, the extrinsic rewards can, overtime, slowly be removed. Contriving or capturing motivating operations may be used to increase the child’s overall motivation to approach and initiated toward a peer. For example, a child with autism may be given a preferred toy that he is unable to operate independently. This context may increase the likelihood that he would approach a peer for assistance. In another example, we could arrange the child’s preferred toys such that when he initiates toward them, we can make access to the chosen item contingent on an initiation toward a peer. It is also possible to teach peers to solicit responses from the child with autism, and to provide rewards for social behavior. In typical teaching interactions, adults all too often provide the rewards. As a result, the learner with autism becomes more likely to approach and initiate toward adults. We can strengthen the value of interacting with the peer by having the peer provide the relevant rewards. 7. Social skills are so important for children with autism, yet are often the area in which we as behavior analysts see the most modest gains. How do you think we as a field can increase the success of our interventions in this realm? If observed gains in this area are indeed modest, I suspect it is because we, as practitioners, are modest inour own applications of the principles of ABA to the subtleties of social behavior. Of course, that is likely because we are ourselves reinforced by addressing skills that are quickly established and readily maintained. Social skills are often more challenging on both counts, because they involve a complex set of variables. We know, for example, that teaching children with autism to imitate and follow simple commands or to fill in the words of familiar 8. It seems like many people believe that ABA is less relevant for teaching social skills (compared to more basic and less complex skills). How can we help the larger autism treatment community understand the utility of ABA in targeting social deficits? As a field, there is certainly room for improvement in our efforts to market our discipline and explain the research supporting the efficacy of our work. Consider this: I was recently working with a family who decided to abandon ABA-based intervention services to begin a full-time “relationship”-focused intervention. When asked why she was making the change and what she hoped to gain from it, the child’s mother replied that she wanted her child to learn to establish joint attention and be more engaged in social interactions. I was surprised, having just published a study on joint attention in a major periodical, and experienced a strong sense of failure in communicating what ABA can offer in addressing these critical skills. I also realized that however important our continued professional dialogue may be, we must devote as much or more time to making contact with the broader autism treatment community. This requires both more communication and better communication. First, we need to devote time to speaking and writing for non-ABA audiences, and in a wider variety of public venues, including schools and diagnostic centers. Second, we must design materials that can reach and speak to a broader audience. For example, positive visual images representing the work that we do, quality videos of procedures and children’s responses to our interventions, and the translation of professional research into mainstream media outlets. As practitioners in the field, we pride ourselves — and rightly so — on the science supporting our procedures. But we must show consumers of our services how our science can generate real results and palpable
The Ivymount School Asperger Program: An Interview with Katie Alexander, M.S., Director
Fostering Positive Portrayals of Science-based Autism Treatment in the Media By David Celiberti, Ph.D., BCBA-D
Thank you all for participating in this group interview. Interacting effectively with the media is something that may not come easily for those advocating for science in the treatment of autism. Many of our most skilled clinicians and prolific researchers have not mastered the requisite skills needed to interact with members of media who write about autism treatment. Andy, in your view, what is Job #1 when framing science-based autism treatment for the media? Dr. Andy Bondy: Several interactions with members of the media from Delaware taught us to focus on how the Delaware Autism Program actually helped individual children or families. While trying to describe the broad educational goals of a comprehensive program is interesting to some, exciting changes in family life, job performance, and meaningful community involvement always gathered the most positive attention. Showing children happily engaged in activities that readers or viewers could understand immediately worked better than showing the ―practice‖ time. Doing one-on-one work is often simply the preamble to getting the skill into a functional context so we highlighted the functional, practical outcome for all ages of our students including getting real jobs in the community. Boldly and enthusiastically talk about the positive changes your strategies bring about talk about helping children and adults become happy (i.e., they smile and laugh more often, tantrum less often), assume greater independence/selfreliance (i.e., they initiate more, become less prompt-dependent), broaden their horizons (i.e., they participate in more varied experiences, increase the number of games they play and the number of playmates). Don’t be concerned, while interacting with media representatives, that you are not holding to the strict definition of phrases they want to hear about your colleagues will understand! Mary, can you share a positive experience you had with a member of the media? What made this such a positive experience? Dr. Mary McDonald: I really had a very positive experience with a photo journalist who did a television segment on a fitness program that we have developed for students with ASD. The reason I believe that it was positive is that we had discussions prior to the onsite interview and filming so that we were on the same page and he had some background information. The segment came through very well and really told the story that I was looking to tell. In addition, after completion of the piece I was able to share resources with the journalist for future reference (i.e., information about ASAT). The journalist was very interested in where to go for information as he stated that he was a ―jack of all trades and a master of none.‖ Ken, the Center for Autism and Applied Behavior Analysis at Caldwell College has recently received some nice publicity (click here). Can you share a not-so-positive experience you had with the media? What prominent lesson did you learn from this experience? Dr. Ken Reeve: A few years ago I was asked by a local newspaper reporter to comment on the lack of evidence surrounding the supposed link between vaccines and autism. To me, this seemed like a wonderful opportunity to promote science to the general public, particularly given that this is a heated topic with profound public health implications. After describing numerous studies that failed to find any link between autism and vaccines, I was profusely thanked for my time and expertise by the reporter. I felt certain that the story would be a nice piece that would provide insights about the state of the science and better inform parents about whether to vaccinate their children. When the story came to print a few days later, however, I was mortified to see that a number of prominent anti-vaccine advocates had been given a large amount of print space to describe every ―reason‖ in the book as to why vaccines did have a hand in causing autism. My comments were merely inserted, almost as a footnote, to provide some counterpoint, albeit a very watered down version of what I had said to the reporter. Since that time I have learned to ask any reporter I speak to what the purpose of their article/story will be. Not all reporters, however, will let you know in advance how their story will eventually shake out. Some reporters will simply provide you with a forum to say your piece, while others may use your material as a token counterpoint to a much more controversial side of the story. Despite these risks, I still assert that it is important we assume the risks to promote science in autism treatment to the media. After all, if we don’t do the talking, there are certainly many more people invested in pseudo and anti-science autism issues who will. Dr. Mary McDonald: There are times that those in the media may quote you inaccurately or, as Ken mentioned, may present something in a different light than you had intended. There was an occasion where I felt that what was printed was inaccurate and was not what was said during the interview. Because of this, I contacted a colleague to be sure that if they had read this media piece that they understood that the media had misquoted me. As a result of this experience, I am now very clear in what I share and I also ask to review the piece before it is finalized if possible. These are excellent suggestions and caveats. How can we better sell "science" to the media? Dr. Andy Bondy: Effective communication is defined by the listener, not the speaker. Therefore, we will be effective with the media when we speak in terms they already understand. We should not endeavor to introduce our terminology-jargon to the public via media. I would never use terms such as ―stimulus control,‖ ―thinning rates of reinforcement,‖ ―stimulus generalization‖ or even ―verbal behavior.‖ Even if I take time to explain these terms I am immediately distancing myself from the audience. We teach skills that help children interact with teachers, family and peers in ways that make everyone involved happier and less frustrated. When we see a child doing things that are harmful or dangerous we teach alternative ways of handling similar situations. Anyone planning to speak with anyone in the media should practice speaking without the use of jargon for without practice, poor, hesitant performances are likely to occur. Perhaps talk to a group of parents or high school students and get some feedback on the best phrases to use to make your points relevant and succinct. When focusing on the broad topic of science, I first point out that science is a group activity you can’t do ―science‖ alone. The process starts with observations of things everyone can agree took place. For example, I drop a pen and everyone agrees it falls to the floor. Without that agreement in what happened there is no science. Why did it fall? That is a different process: but one that we cannot move toward without first agreeing on what took place. And so it is with behavior. First we must agree on what happened he spoke, he hit, she smiled then we can talk about why those things happened. Essentially, we must make science practical and available to everyone not just PhDs.
Dr. Mary McDonald: I think it is important to remember that although our passion may lie in the science and data, the majority of people are interested in a great story. We often focus too much on the science and forget about the ―heartfelt‖ story that lies within. These are the stories that most people want to read, these are the stories that sell papers, so these are the stories that the journalists are interested in sharing. It is important to tell the story that will be read and be sure to sprinkle in information about science as warranted.
Professionals committed to evidence-based practices should be an integral part of the conversation about autism treatment. How can professionals better position themselves as resources for journalists? In other words, how can they become a "go to" person within their communities?
Dr. Linda Meyer: Be available. If there is an event that is rumored to be heavily covered by the media, be sure to attend and bring your business cards, as well as other informational materials. Introduce yourself as a resource and offer to be interviewed. Once the compelling interview is in print and/or on camera, other media outlets will be more likely to rely on that for follow-up stories and future pieces. Look for and/or set up photo opportunities for later use on your website and newsletter. It is important to remember to respond to all media requests as promptly as possible. Reporters and producers all work under deadlines and if they don’t get what they need, they will quickly move on; therefore, respond to deadlines. Opportunities come up on a moment’s notice. You need to be ready to take advantage. During an interview, speak in full sentences and frame your answer by echoing the question. This will make it easier for the reporter to plug your ―sound bite‖ into the final piece because it can stand alone. An example would be: Q: ―Why should a parent call Autism New Jersey when their child receives a new diagnosis?‖ A: ―Families should reach out to Autism New Jersey as soon as their child receives a diagnosis of autism because…‖ After the interview, thank the reporter for his/her time and let them know that you are available for follow up questions, or stories in the future. Writing a thank you note after the story is run reminds the reporter of your contribution and may increase the likelihood of subsequent contact. Dr. Ken Reeve: Within your neighborhood, you might be surprised to see how many opportunities there are to speak about science and autism treatment, particularly during April! To identify reporters who write about autism treatment, research online archives of local newspapers to find stories related to this topic. Contact those reporters via email (which is usually available in online sources) and compliment them on their stories. You can then pitch some new stories to them about your activities or do so in a follow-up contact. At Caldwell College, we used this same strategy when we launched our ABA graduate programs and it was picked up in the New York Times! As you establish a relationship with reporters, keep in mind that they tend to prefer interviewees with prior media experience. Once you have done a few stories, write a bio for popular consumption with bulleted accomplishments and what you can do (and where you have done it). For example: • Can talk about effective autism treatments • Can debunk fad treatments from real ones • Can provide description of ABA treatment Include in your bio all your media activities, with specifics, such as ―interviewed by WFFM 1020 AM regarding vaccine controversy on August 10, 2009. There are a number of additional strategies on interacting with the media that my colleague Sharon Reeve and I contributed to a chapter in Jon Bailey and Mary Burch’s wonderful book 25 Essential Skills for Behavior Analysts. Those are great suggestions, Ken. Linda, based on your experiences, how can professionals pitch a story to the media? What other steps should they take? Dr. Linda Meyer: Write a compelling press release (keep it to one page), or e-mail the reporter or producer a detailed State exactly what the news is, or what event is being promoted. Keep it short, get to the point and relay the message so that it can appeal to a wide audience. To avoid having reporters or producers delete an e-mail without looking at it, personalize it to each individual. Many reporters will delete messages sent to more than a few recipients. Don’t send pictures, but state that photos are available and send press releases in the body of the e-mail, not as an attachment. If you are passionate about individuals with ASDs, your work, and the science which supports your work, and think that others would benefit from additional information or another perspective, you may choose to write a letter to the editor of a newspaper. ASAT does this frequently through its Media Watch initiative. There are clear guidelines and limitations given on the editorial page or letters-to-the-editor page. Follow the guidelines regarding length and format, especially regarding the length, which is usually about 250 words. Be sure to clarify at the opening of your letter, before the ―Dear Editor‖ line, that you are willing to have your information edited. This increases your likelihood of being published, especially if the material is too long. Any other suggestions for interacting with reporters throughout the process? Dr. Ken Reeve: As Linda Meyer mentioned earlier, once you earn an opportunity to speak with a reporter, you need to expect that you may be contacted for a story at a moment’s notice. Reporters are often on deadlines and if they cannot get hold of you they may pass you by! This is not to say that you need to drop everything when a reporter comes-a-calling but you should try to get back to them that business day. Once you become a reliable ―expert‖ who can be reached easily, you will be more likely to be asked to contribute to future stories. NEVER blow off an appointment with a reporter! A public relations colleague once informed me that you are placed on the proverbial black list if you do that. When you establish a relationship with a reporter, offer to give them suggestions about other professional contacts and resources in the field. This will help the reporter with other stories they might be considering and they will (hopefully) remember your helpfulness. Dr. Linda Meyer: Interacting with the media begins with confidence and knowledge. As the expert on a topic, professionals should be reliable and truthful. When a reporter calls about a particular topic, know the facts and have two or three points that you want to make. Be direct when answering your questions. Using technical language or jargon may confuse the issue and may lead to possible misinterpretation prior to publication. If a reporter asks a negative or loaded question, don’t repeat the negative. Respond with positive sound bytes. Chances are, your response will be the headline or sound byte that makes the 5 o’clock news. Always tell the truth: Your credibility is all you have. Once a reported catches you in a lie you will never regain his/her trust. Even worse, your lying becomes the story. Do not work very hard to establish your credentials as you wouldn’t be the subject for the interview if someone didn’t think you belonged there. Stating your credentials wastes time and makes you sound arrogant. If you are not ready and able to answer a reporter’s questions, refer them to someone who can. Helping the reporter make other connections is often very much appreciated. Don’t be creative: If you don’t know an answer, say so and offer to get back to the reporter. Remember, you control the interview. You can always steer an interview back to your topic of expertise by beginning your answer with, ―The real issue is…,‖ or, ―More importantly…‖ Know the reporters’ style and the influence they have in their own newspapers as well as with other reporters. One suggestion for getting a story published is to give the lead to a prominent reporter. Chances are when one influential reporter picks up a story, others will follow. We also know a journalist who frequently inserts an unrelated, thought-provoking, and controversial question during an interview. Responding is at best a distraction and may even turn the interview into something very different. Remember, you’re the expert. Hopefully, you came to the interview with a plan in mind. Be sure you focus and refocus on the message you want to deliver throughout the interview. Do you have recommendations for any resources that may help professionals improve upon their repertoire of skills for relating to journalists? Dr. Linda Meyer: In preparation for working with journalists, take time to watch, read and listen to reputable news outlets. There is a lot to learn from others who recount newsworthy stories in a compelling manner. Take notice and judge how well or how poorly people tell their stories. Note the anchor’s lead-ins to stories, and how in ten seconds or less, they tell listeners what the upcoming story will cover. Also pay attention to headlines and note how so few words can encapsulate an entire story. If possible, spend the money and the time to get media training from a credentialed media specialist. You’ll learn how to dress for a T.V. interview (no fabrics with bold patterns, avoid white), interview using a remote camera and ear bud (look right at the camera and assume that the camera is always on you), the importance of posture (keeping your back off the seat and leaning forward takes years off of your appearance). While interviewing remotely for a radio broadcast, consider standing up while being interviewed on the phone. It may keep you alert and give a lift to your voice. On a broader note, develop a communication plan for your school or agency. Designate a spokes-person(s)-decide who can and should represent your school, program or agency. Take a few minutes to codify a description of your program (could be taken directly from your Federal 990 Form if you have reworked it recently), and identify current issues about which you may contribute input. Dr. Ken Reeve: In addition to using Linda Meyer’s great suggestions, I also recommend a very helpful book to any professional interested in promoting science-based autism treatment to the media. It’s called A Scientist's Guide To Talking With The Media: Practical Advice from the Union of Concerned Scientists, by Hayes and Grossman. Although it doesn’t focus on autism per se, the information in the book is generalizable to speaking to the media about any topic grounded in science. Dr. Andy Bondy: I would advise looking for podcasts or other easily digestible material on public relations. Disavow yourself of the view that being smart is equivalent to being a good public speaker. Working effectively with individuals with autism and conducting a successful training workshop, talking to the media is a behavior that, like every other one, is honed over time - it does not simply emerge following reading, watching or otherwise passively observing others. Seek out practice opportunities and refine your behavior over time. Mary, why is it so important for the members of the media to be better educated specifically when it comes to individuals with ASD? Dr. Mary McDonald: Because autism is such a popular topic in the media, it is rare that a week would ever go by without some sort of media coverage on autism. Although media articles can be a helpful source of information, they also can mislead people in many ways. For example, when parents first learn that their child has an autism diagnosis, they can be overwhelmed and may not know where to begin. Often the media provides information about interventions for individuals with autism. However, this information is often inaccurate or the interventions that are covered in the media are not based on empirical evidence. As parents typically do not have training in the scientific method, it is often difficult for them to differentiate between science-based and non-science based interventions. Therefore they are likely to waste time and money on unproven treatments, which can result in an emotional drain on the family. In addition, there is always potential harm to the child and thereby the entire family. ASAT sponsors Media Watch in order to respond to these types of media pieces and provide feedback to the writer. We are currently implementing our journalist initiative to try to take a more proactive approach and educate the media community about autism interventions before their stories ―go to print‖. Thank you all for your insights and suggestions. I appreciate the time you took to share your diverse experiences with our readers.
This interview appears with permission from the Association for Science in Autism Treatment. It is reprinted from the Summer Issue of Science in Autism Treatment. To sign up for ASAT's free newsletter, please go to www.asatonline.org/signup 11. Feeding Interventions: An Interview with Melmark’s Dr. Chris Perrin.Feeding issues and interventions are complex and daunting, even for veteran behavior analysts. The management and treatment of these issues require specialized expertise and training. While not all behavior analysts possess such training, most will encounter feeding problems at some point in their career. We spoke with Dr. Chris Perrin at Melmark about the innovative work he has been doing in this area, about the challenges encountered in this arena in clinical practice, and about the rewards associated with seeing progress in these individuals.
Dr. Perrin just co-authored an article on feeding issues in autism in the Winter, 2012 issue of Autism Spectrum News. It provides a thorough review of research literature and more specifics on the behavioral interventions used in addressing these issues. It can be found at http://mhnews-autism.org. Dr. Perrin is the Senior Clinician of Children’s Behavioral Health Services at Melmark in Berwyn, PA.
Weiss: I always think of feeding issues with some trepidation. Do you? It always seems like such a formidable challenge…
Perrin: I think it is wise to approach feeding problems with caution. However, personally I find addressing feeding problems very exciting, as one is able to make a significant impact on an individual’s life.
Weiss: What do you think about our ability as behavior analysts to meet these issues?
Perrin: In many cases it is likely that operant or respondent learning histories account for a presenting feeding problem. Therefore, behavior analysts are well equipped to address feeding problem. There is a growing body of literature supporting the effectiveness of behavioral interventions in treating feeding problems.
Weiss: So, who better than us, right? I definitely see your point. Given that behavior analysts CAN significantly treat these issues, do you think specialized training in feeding is desirable? Essential? What safeguards or recommendations would you make regarding the treatment of these issues? Are there variables that would make you recommend that an agency or school consider bringing in an external consultant?
Perrin: As with any area of applied behavior analysis, it is important to work within ones area of training. That is one of most important ethical guidelines. Many behavior analysts do not have specialized training or knowledge in these areas. This is definitely an area in which there may be a need for consultation or outside expertise. There are a couple of things that make it especially challenging or complex.
At times underlying medical issues such as reflux or swallowing problems can account for feeding issues. Therefore, I believe that an interdisciplinary approach to treating feeding issues is essential. Prior to starting any intervention, it is important to consult with other disciplines such as speech therapy, dieticians, and GI physicians to address any underlying medical concerns. Once treatment begins, ongoing consultation is necessary because as caloric intake by mouth increases, it will become necessary to adjust any supplemental feedings.
Weiss: Just listing some of those issues does highlight how formidable these issues can be, and how sobering it can be to really examine their impact on the individual’s life. I know feeding issues take many different forms. Can you comment on the differences in treating food refusal vs. food selectivity? What are the main challenges in each? Which presents with more logistical or medical concerns?
Perrin: In many cases, the interventions for food refusal and food selectivity will have similar elements. In both situations, reinforcement is provided for consumption of targeted foods and often times; extinction is in effect for refusal behaviors. The exact manner and type of reinforcement delivered varies depending upon the individual circumstances. In the case of food selectivity, as some foods are preferred, it is possible to use those foods as reinforcers for consumption of target foods. In the case of food refusal, leisure items or perhaps escape from the meal can function as reinforcers for bite consumption.
In both cases, identifying the underlying function of the food refusal will help guide treatment. The behavioral literature includes examples of both experimental and descriptive assessments of feeding problems.
Weiss: What do you find most difficult from that list of interventions?
Perrin: In my experience, the most difficult part of feeding interventions is implementing escape extinction. Presentation of non preferred foods can evoke a number of challenging behaviors including throwing and swiping food, gagging, and sometimes vomiting, not to mention self-injury and aggression. Careful structuring of meals in combination with rich schedules of reinforcement can help to mitigate these behaviors.
Weiss: Do you have any words of wisdom for preparing staff members and parents for such behaviors?
Perrin: Careful planning is the key. Clear staff or caregiver responses need to be outlined for all possible scenarios. Staff or caregivers need to be trained on those responses and practice them in role playing situations. In the early stages of intervention, having additional support available is also useful. The additional people can focus on blocking inappropriate behavior and ensuring all materials are available, leaving the primary therapist free to focus on implementing the feeding protocol. Finally, it can be helpful for more experienced individuals to conduct the initial meals and then fade in parents, caregivers, or less experienced staff once the extinction burst has begun to subside.
Weiss: Much of the research literature on feeding has been done in highly controlled, hospital environments. Our readership includes many individuals working in less controlled settings, such as classrooms. I know that you have had experiences working on recalcitrant feeding issues in settings that are less well-controlled than a hospital. Can you elaborate on your experiences in those school and home settings, and comment on how setting influences the development of the intervention protocol and the intensity with which treatment can be conducted? For example, I know that in school programs, it is still expected that the learner will work on their daily goals (in addition to participating in feeding sessions). How do these competing priorities get managed?
Perrin: Actually all of my experience addressing feeding problems has been outside of a hospital setting. This creates unique challenges. For instance, when an individual is admitted to a feeding clinic, the sole focus is to address the feeding issue. All of the necessary supports are available and intense interventions are possible. In more natural settings such as homes and schools this flexibility is not always afforded. For instance, schools are required to meet the goals outlined in the IEP, so the amount of time spent addressing the feeding problem in meals or shaping sessions must be adjusted accordingly. In addition, the logistics of staffing also can be difficult. In the early stages of intervention, it may take multiple people to implement a protocol. This often requires a team of people to juggle schedules and other responsibilities in order to be available to assist.
Weiss: Here’s another logistical challenge……… I know that you have been working with some adolescents in this protocol. How does age influence the procedure? What additional issues come into play when working with older learners who present with feeding issues?
Perrin: Age definitely can influence the procedure used to address feeding problems. Adolescents likely have presented with feeding problems for some time, therefore the learning history is much longer than that of infants and children. This likely has produced an effective and efficient repertoire of avoidance or escape behaviors. In addition, adolescents are physically larger and stronger than infants and children therefore this needs to be taken into consideration when choosing interventions. For instance, depending on the size of the adolescent, caregivers may not be able to manage an extinction burst. So, other alternatives may need to be considered. Weiss: What kind of impact have you seen result from these interventions? Have you been able to achieve results that would be considered socially significant? If so, tell us more about that. Perrin: I think the impact of a successful feeding intervention is one of the most reinforcing things I have contacted in my clinical work. I have had the pleasure of seeing children who actively and effectively refused all food presentation prior to intervention calmly sit and independently feed themselves after a couple of weeks of treatment. In many cases, this has resulted in decreased reliance on gastric or naso-gastric tubes for caloric intake. In some cases a successful intervention has allowed individuals to have their tubes removed. One especially memorable case resulted in an adolescent eating meaningful amounts of food by mouth for the first time in 16 years and resulted in him eating cake on his birthday for the first time Weiss: Wow, it does not get more socially significant than that! Thanks for sharing your expertise with our readers!!!
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| Last Updated on Monday, 04 June 2012 19:26 |