Policy-Related Research Issues and Perspectives Richard L. Simpson

Relative to the education of children and youth with autism spectrum disorders, this article discusses the need to connect research and policy. Included in the discussion are issues related to selecting and implementing use of research and evidence-based practices with students with autism-related disabilities and the need for appropriately trained educational professionals. Discussion of these issues is accompanied by recommendations for action.

A

utism is a particularly complex and perplexing disability. By definition, children and youth diagnosed with an autism spectrum disorder present with a variety of social interaction deficits and peculiar mannerisms: They have speech, language, and communication impairments and oddities, and individuals with autism-related disorders commonly manifest a medley of restricted, stereotyped, anomalous, and aberrant behaviors (American Psychiatric Association, 2000; Mauk, Reber, & Batshaw, 1997). Individuals diagnosed with autism spectrum disorders also commonly have co-morbid diagnoses (e.g., mental retardation, obsessive–compulsive disorder, depression) and a wide range of skill levels, including isolated and highly unique abilities that further contribute to their enigmatic persona. Moreover, the recent dramatic increase in the prevalence of autism spectrum disorders has created significant resource and related issues and challenges for families, schools, and communities; a barrage of media and political attention about how best to conceptualize autism and its diagnostic markers; and debates related to identification and use of effective and

cost-efficient interventions and treatments for children and adolescents with autism. Public policies and mandates related to children and adolescents diagnosed with autism spectrum disorders are obviously connected to the aforementioned challenges and issues. Indeed, state departments of education, local school districts, advocacy groups, and parent and family support organizations have all actively been engaged in attempts to influence decisions regarding the types of resources needed by persons with autism and their families, how these resources will be used, the qualifications and training requirements of individuals who work with individuals with autism, strategies for ensuring the equitable distribution and availability of needed services and other resources, and related matters (Feinberg & Vacca, 2000). These policy-influencing efforts, and the policy outcomes that have ensued, have affected both the quantity and quality of programs and services for students with autism, although not always positively. These hit-and-miss outcomes can at least in part be traced to the fact that scientific evidence has often been missing from the

decision-making process. That policy decisions related to social and educational programs, as well as services for individuals with disabilities, are primarily based on political and financial factors, rather than scientific evidence, is a reality that will not appreciably change in the foreseeable future. Nevertheless, it is increasingly apparent that decisions affecting autism-related policies and mandates are best made under the influence of scientific evidence. In this context, this article discusses a research foundation for responding to two salient policy issues affecting the education of children and youth with autism spectrum disorders: (a) identification and use of effective and cost-efficient interventions and treatments and (b) personnel standards and personnel preparation requirements.

Effective and Cost-Efficient Interventions and Treatments Treatments and interventions for children and youth with autism spectrum disorders are well known for their quantity, variety, creative character, and controversy. Clearly, there is no shortage of methods for responding to the needs of individuals diagnosed with autism, and the list of purported interventions and treatments grows virtually daily. Unfortunately, the creative elements of many of these methods have far outweighed their proven effectiveness. Thus, while profes-

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES VOLUME 18, NUMBER 3, FALL 2003 PAGES 192–196

VOLUME 18, NUMBER 3, FALL 2003

193 sionals, parents and family members, decision makers, and others are exposed to numerous interventions and treatments for persons with autism, the effectiveness of many of these options is unknown or unproven. As a result, there is fierce debate over which options hold the most promise, and decisions regarding methodology selections are often based on hype and other nonscientific factors. That a number of these interventions and treatments seem to have limited or no valid theoretical or empirical foundation (Biklin, 1993; Heflin & Simpson, 1998a; Jordan & Jones, 1999) and that some methods have been shown to lack scientific efficacy (Gersten & Baker, 1997; Shavelson & Towne, 2002) has further exacerbated this problem. Ironically, even the most empirically proven intervention method for students with autism, applied behavior analysis, has for years been embroiled in a strident controversy related to outcome claims, extensive and exclusive use, and training requirements of persons using the method (Gresham & MacMillan, 1997; Lovaas, 1987). Thus, proven scientific efficacy is no guarantee that a method will not be involved in the controversy over which method is most suitable for educating students with autism. Paralleling the debate over preferred methodologies for students with autism spectrum disorders has been the recent U.S. Department of Education (USDOE) push for identification and use of evidence-based classroom practices. Secretary Rod Paige has been consistently forthcoming in his opinion that the USDOE should encourage and otherwise support educational practices whose effectiveness has been proven by rigorous scientific research. This message has been lucidly stated in the No Child Left Behind Act and in the numerous policy and opinion statements of the USDOE. Moreover, the forthcoming Individuals with Disabilities Education Act (IDEA) reauthorization process will highlight the USDOE emphasis on policies that promote use of research-based practices that have a proven track record with students with disabilities. Secretary Paige recently

released the USDOE principles for reauthorizing IDEA (USDOE, 2003), assertively stating that IDEA should ensure that schools, state education organizations, and the Federal Department of Education embrace and approve evidencebased practices. Paige further stated that families and teachers should be informed about effective programs based on rigorous research, including requiring parent training centers that receive federal funding educate parents about effective research-based methods related to students with disabilities. Related to its emphasis on evidencebased practices, the USDOE recently established the What Works Clearinghouse (WWC). The WWC is designed to provide decision makers with a reliable and proven source of scientific evidence regarding efficacious and utilitarian educational methods. The proposed method for identifying efficacious educational practices is the Design and Implementation Assessment Device, developed by the WWC, and a related protocol for confirming that there is scientific evidence to support a particular practice or method. Unfortunately, the Design and Implementation Assessment Device and its related validation process are based on an extremely narrow interpretation of scientific evidence (i.e., one based on randomized experimental group design methodology). Although clearly a robust process for controlling for alternative explanations and inferences associated with research study results and arguably appropriate for certain groups of students with disabilities, randomized experimental group designs are generally unsuited for studying the heterogeneous children and youth who are a part of the autism spectrum. Even though the prevalence of autism-related disabilities has significantly increased, the numerous subtypes of the disorder, the highly heterogeneous nature of autism spectrum disorders, and the myriad settings and alternatives used to educate students with autism spectrum disorders make it extremely difficult (if not impossible) to generate the comparable samples needed to conduct randomized experimental group studies

with students with autism. Accordingly, adoption of the criteria proposed by the WWC in its Design and Implementation Assessment Device recommendation would discount and marginalize a significant amount of scientifically valid current and future single-subject, qualitative, and quasi-experimental research conducted with students with autism spectrum disorders. That single-subject designs have almost exclusively been the basis for establishing the scientific validity of applied behavior analysis, the most efficacious educational intervention available, with students with autism is clear evidence for this contention (Cooper, Heron, & Heward, 1987; Foxx, 1977; National Research Council, 2001). The USDOE initiative to promote identification and use of scientifically based methods generally bodes well for students with autism and their families. Those involved in the intervention and treatment of individuals with autism spectrum disorders, including professionals, parents, family members, and policymakers, have for decades navigated the gauntlet of autism-related methodology choices without the guiding light of scientific evidence. Accordingly, there is an undeniable need for information on the validity of educational methods and strategies for children and youth with autism spectrum disorders. Yet, if research and evidence-based practices are limited to those interventions and treatments that meet the narrowly defined and rigid criteria being advanced by the WWC, then little relief for individuals struggling with methodology choices can be expected. Indeed, there is every reason to believe that the current strident methodology-choice debate and dilemma will be exacerbated by the proposed USDOE scientific validation policy. Relative to students with autism, however, there appears to be an obvious solution to the challenge of identifying research-based practices: Strongly adhere to the theme of identifying researchbased practices, albeit with more flexibility in the nature and meaning of “evidence-based” findings. This solution

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES

194 will not necessarily be easy to implement; however, this makes it no less obvious. It is important to accentuate that this solution has a foundation in general support for the USDOE initiative to identify and use evidence-based educational methods. It is painfully clear that this is needed now more than ever. Without objective identification and use of research- and evidence-based practices, it is likely that many of the contested Individualized Education Programs for students with autism and the ubiquitous legally based debates and the number of due process hearings related to educational methodology for students with autism will continue to increase. However, it is mandatory that the process for identifying effective practices be more flexible than what is being proposed by the WWC. It is obvious that the narrowly defined preferred research design criteria proposed by the WWC will fail to provide appropriate guidance to professionals, parents, and others regarding educational methods most likely to result in desired and sustainable outcomes for students with autism spectrum disorders. It is also obvious that the process of identifying research-based practices must go beyond merely citing promising research findings. The issue of identifying methods that will facilitate bridging the gap between research and practice and scalability are equally important to the process of identifying evidence and scientifically based practices as to the process of identifying efficacious research findings (Abbott, Walton, Tapia, & Greenwood, 1999; Carnine, 1997; Deshler, 2002). Methods that were developed in ideally controlled lab settings, that have not been tested and implemented in typical educational environments, and that require unrealistic levels of personnel support and other resources must not be made the narrow standard of what constitutes effective practice. It is also important that effective methods be matched to particular groups of students. For instance, it would be unacceptable to identify a particular method as universally acceptable for students with autism spectrum disorders if the strategy had only been tested with students diagnosed with

Asperger syndrome or if the research had only been based on preschool children with classic autism. In this context, several professionals have recommended guidelines and key questions to consider related to selecting treatment and interventions for students with autism spectrum disorders (Freeman, 1993, 1997; Heflin & Simpson, 1998b). These guidelines and questions are recommended as critical variables in guiding the validation of educational methods for students with autism spectrum disorders. Recommended factors to consider include the following: 1. anticipated outcomes associated with the use of a particular educational intervention; 2. the potential risks associated with using particular educational interventions; 3. methods for evaluating each option, including the manner by which progress will be demonstrated, who will conduct the evaluations, criteria for determining if a treatment should be continued, and so forth; and 4. the basis for validating intervention efficacy (e.g., randomized group design, single-subject design, qualitative research). This multifactor process, in combination with matching “real world” research findings with particular types of students with autism spectrum disorders, would more broadly and effectively identify appropriate and scientifically based practices for students with autism spectrum disorders by linking particular methods with the needs of specific groups of children and youth. There is no question that there is a need to ensure that teaching and learning in classrooms that serve students with autism spectrum disorders are based on scientifically valid practices. Thus, the USDOE must be supported in its current effort. Yet, this effort, at least with regard to students with autism spectrum disorders, will only be successful if multiple means of research are sanctioned for this process and if effective practices include consideration of sustainable practices in

settings that routinely serve these students.

Personnel Standards and Personnel Preparation Requirements There is overwhelming evidence of a shortage of teachers and other professionals who have the knowledge and skills to serve the needs of children and youth with autism spectrum disorders (Myles & Simpson, 2001; U.S. Senate, 2002). There is also every reason to believe that this trend will continue at least for the foreseeable future. The significance of this problem is immense. Indeed, I believe that preparing qualified teachers and other professionals to educate and otherwise support students with autism spectrum disorders is the most significant challenge facing the autism field. Teachers and other personnel assigned to educate and intervene with children and youth with autism spectrum disorders require a foundation of basic educational skills in combination with specialty skills in the area of autism. As noted earlier, autism is particularly enigmatic and difficult to address. Thus, it bodes extremely poorly for students’ positive outcomes if professionals assigned to work with these students lack the necessary skills to be successful. Educators must be knowledgeable and experienced in correctly applying and evaluating scientifically based management, communication, social interaction, independent living, cognitive and academic skill instructional intervention, and related strategies and curricula. It is also essential that these skills be modeled, taught, practiced, and evaluated in quality field placements with students with autism spectrum disorders and that ongoing opportunities for skill enhancement and refinement be provided. Because the majority of students with Asperger syndrome and highfunctioning autism exclusively receive their education in general education classrooms and students with more severe forms of autism routinely spend significant amounts of time in general

VOLUME 18, NUMBER 3, FALL 2003

195 education settings, general classroom teachers require autism-specific training and support. Of course one might argue that the same case could and should be made for all educators. Notwithstanding the logic of such an argument, it is nonetheless true that the uniqueness of students with autism and their requirements for special methodology and professionals who are skilled in using such methodology make the need for welltrained autism-specific personnel particularly significant. This need for educators and related services personnel who possess autismspecialty skills runs counter to personnel preparation trends toward noncategorical and cross-categorical special education personnel preparation and generic education certification and licensure and an increased willingness on the part of states to grant emergency certificates to unqualified personnel. Thus, in spite of an unprecedented increase in the prevalence of autism spectrum disorders and a clear need for professionals with specialty skills to serve students with autismrelated disorders, states are increasingly issuing licenses that assume that generically trained educational personnel are able to adequately address the needs of all students with disabilities, including those with autism. It is also ironic that the USDOE’s demand that educators be knowledgeable and skilled in using and evaluating evidence- and research-based practices juxtaposes with their unwillingness to increase federal support for personnel preparation. This policy decision not only lacks sound logic but also contributes to an equation that will undermine the capacity of teachers to develop the skills and knowledge to choose, correctly apply, and empirically evaluate maximally effective, scientifically valid intervention methods needed to educate students with autism-related disabilities. There are currently relatively few quality preservice teacher-education programs designed to prepare teachers and related service personnel specifically for careers with students with autism spectrum disorders. A weak economy, threats of war and domestic terrorism, and impotent

administrative support for education makes the prospect of a significant increase in the availability of specialtyoriented personnel preparation resources, at least in the immediate future, unlikely. Moreover, quality inservice training programs for developing autism-related skills and knowledge are in short supply. Hence, in spite of an unprecedented need to support autism-related personnel preparation, the prospects of obtaining the resources needed to undertake such work appears to be poor. Teaching and otherwise successfully intervening with children and youth diagnosed with autism spectrum disorders requires specialized instructional and management knowledge and skills (Maurice, Green, & Luce, 1996; Myles & Simpson, 2001; Quill, 2000). To claim otherwise defies logic and fact. Thus, even though scientifically based autismspecific strategies and skills are grounded in generic educational and behavioral science principles, personnel training programs must be designed specifically to prepare teachers, related services personnel, and others to individually address the needs of students with autism spectrum disorders. Hence, the solution to the problem of having insufficient numbers of qualified personnel to serve individuals with autism is not to adopt policies wherein one or two traditional courses are added to an existing generic teacher education program, to decree that generically trained teachers and staff members are qualified to work with students with autism without additional training, or to provide occasional inservice training sessions on autism. At the same time it is unreasonable, at least at this time, to expect every educational professional who works with a student with autism to have successfully completed an entire autismspecific preservice program. However, it is both reasonable and appropriate to expect teachers and other professionals who serve the educational needs of children and youth with autism spectrum disorders to have completed a systematic and coordinated program through which they acquired the necessary skills, knowledge, and experiences to teach their pupils using proven research and evidence-

based practices. In order for this to occur, the USDOE and other policymakers and policy implementers must generate the resources and provide the structure and leadership to support basic autism-related training and standards. Implementation of such policies will not be easy, given present economic and political realities. Yet, not to move in this direction would mean that it is unlikely that educators will have the means to bring about those outcomes that will make a significant positive difference in the lives of individuals diagnosed with autism spectrum disorders and their families.

Conclusion Current educational policy reform has the potential to significantly improve the outcomes and quality of life for children and adolescents diagnosed with autism spectrum disorders. In order to have the maximum positive impact, however, these reforms must be grounded in research. In this context, adoption of research- and evidence-based practices is essential. Methodologies for practice validation, however, must be consistent with the realities of the heterogeneous students on the autism spectrum and their families and the varied educational settings in which they are served. Moreover, the teachers and other personnel who serve these students must have the necessary training to ensure that they have the necessary knowledge, skills, and experiences to effectively select, implement, and evaluate effective practice strategies and curricula. ABOUT THE AUTHOR

Richard L. Simpson, EdD, is a professor in the Special Education Department at the University of Kansas, acting director of the special education programs at the University of Kansas Medical Center, and interim acting chair of the Special Education Department at the University of Kansas. He has worked as a special education teacher, school psychologist, and clinical psychologist. He is senior editor of the professional journal Focus on Autism and Other Developmental Disabilities. Address: Richard L. Simpson, Joseph R. Pearson Hall, 1122 W.

FOCUS ON AUTISM AND OTHER DEVELOPMENTAL DISABILITIES

196 Campus Rd., Rm. 530, Lawrence, KS 660453101; e-mail: [email protected]

REFERENCES

Abbott, M., Walton, C., Tapia, Y., & Greenwood, C. (1999). Research to practice: A blueprint for closing the gap in local schools. Exceptional Children, 65, 339– 352. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Biklin, D. (1993). Communication unbound: How facilitated communication is challenging traditional views of autism and ability/ disability. New York: Teachers College Press. Carnine, D. (1997). Bridging the research-topractice gap. Exceptional Children, 63, 513–521. Cooper, J. O., Heron, T., & Heward, W. L. (1987). Applied behavior analysis. Columbus, OH: Merrill. Deshler, D. (2002, April 18). President’s Commission on Excellence in Special Education Research Task Force [Testimony]. Nashville, TN. Feinberg, E., & Vacca, J. (2000). The drama and trauma of creating policies on autism: Critical issues to consider in the new millennium. Focus on Autism and Other Developmental Disabilities, 15, 130–137. Foxx, R. (1977). Attention training: The use of overcorrection avoidance to increase the eye-contact of autistic and retarded chil-

dren. Journal of Applied Behavior Analysis, 10, 489–499. Freeman, B. J. (1993). Questions to ask regarding specific treatments. The Advocate, 25(2), 19. Freeman, B. J. (1997). Guidelines for evaluating intervention programs for children with autism. Journal of Autism and Developmental Disorders, 27, 641–651. Gersten, R., & Baker, S. (1997). Design experiments, formative experiments and developmental studies: The changing face of instructional research in special education (Technical Report 98-1). Eugene, OR: Eugene Research Institute. Gresham, F. M., & MacMillan, D. L. (1997). Autistic recovery? An analysis and critique of the empirical evidence on the Early Intervention Project. Behavioral Disorders, 22, 185–201. Heflin, J., & Simpson, R. (1998a). Interventions for children and youth with autism: Prudent choices in a world of exaggerated claims and empty promises: Part 1: Intervention and treatment option review. Focus on Autism and Other Developmental Disabilities, 13, 194–211. Heflin, J., & Simpson, R. (1998b). Interventions for children and youth with autism: Prudent choices in a world of exaggerated claims and empty promises: Part II: Legal/policy analysis and recommendations for selecting interventions and treatments. Focus on Autism and Other Developmental Disabilities, 13, 212–220. Jordan, R., & Jones, G. (1999). Review of the research into educational interventions for children with autism in the UK. Autism, 3(1), 101–110.

Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychololgy, 55, 3–9. Mauk, J. E., Reber, M., & Batshaw, M. L. (1997). Autism and other developmental disorders. In M. L. Batshaw (Ed.), Children with disabilities (pp. 425–447). Baltimore: Brookes. Maurice, C., Green, G., & Luce, S. (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Austin: PRO-ED. Myles, B. S., & Simpson, R. (2001). Effective practices for students with Asperger syndrome. Focus on Exceptional Children, 34(3), 1–14. National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press. Quill, K. (2000). Do-watch-listen-say: Social and communication intervention for children with autism. Baltimore: Brookes. Shavelson, R. J., & Towne, L. (Eds.). (2002). Scientific research in education. Washington, DC: National Academy Press. U.S. Department of Education. (2003). Principles for reauthorizing the Individuals with Disabilities Education Act. Washington, DC: Author. U.S. Senate. (2002). Accountability and IDEA: What happens when the bus doesn’t come anymore? Hearing before the Committee on Health, Education, Labor, and Pensions, examining the implementation of the Individuals with Disabilities Education Act, Hearing testimony, U.S. Senate.