National Standards
Historical Perspective
Evidence-based practice has become the standard in the fields of medicine, psychology, education, and allied health. The idea that decision makers should know how much research supports a treatment has also been important in the field of autism.
For example, in 1999, the New York State Department of Health, Early Intervention Division, published clinical practice guidelines concerning the treatment of very young children with autism spectrum disorder (ASD). In 2001, the National Research Council’s Committee on Educational Interventions for Children with Autism published a report that attempted to identify the best available treatment programs.
In spite of progress made to date, the existing clinical guidelines are limited in several ways:
- These previous guidelines are now outdated because reviews were completed before the turn of the 21st century.
- The reviews did not include all educational and behavioral treatment studies for a broad age range or a variety of ASD diagnosis.
- Evidence-based practice guidelines have evolved.
The National Standards Report addressed these limitations in the following ways:
- We completed a thorough review of the educational and behavioral intervention literature that targets the core characteristics and associated symptoms of ASD that was published between 1957 and the fall of 2007.
- We provided information about intervention effectiveness based on age, diagnostic groups, and intervention targets.
- We tried to make the process completely transparent. We have presented information and solicited feedback from parents and professionals at national and international conferences. We have also received input from a cross-disciplinary group of experts in order to maintain the highest levels of transparency with many professional groups who service children with ASD.
Significant Findings, Phase 1 of the Project
This groundbreaking report covers a broad range of applied treatments and identifies the level of scientific evidence available for each. It includes 775 research studies – the largest number of studies ever reviewed. For the first time, families were able to find specific information about the age groups, treatment targets, and diagnostic populations to which these treatments have been applied.
The findings of the National Standards Project (Phase 1) include the identification of:
11 “Established” Treatments: treatments that produce beneficial outcomes and are known to be effective for individuals on the autism spectrum. The overwhelming majority of these interventions were developed in the behavioral literature (e.g., applied behavior analysis, behavioral psychology, and positive behavior support).
22 “Emerging” Treatments: treatments that have some evidence of effectiveness, but not enough for us to be confident that they are truly effective.
5 “Unestablished” Treatments: treatments for which there is no sound evidence of effectiveness. There is no way to rule out the possibility these treatments are ineffective or harmful.
The National Standards Report encourages parents, educators, and service providers to use this information about treatment effectiveness as they make decisions about which treatments to select. It also strongly advises decision makers to consider other factors in addition to treatment effectiveness, including the judgment and data-based clinical recommendations of qualified professional(s), the values and preferences of the individual with ASD and those who care for him/her, and the capacity of their local schools and/or treatment programs to deliver the treatment correctly.
The project identified significant limitations of current autism treatment research. The National Autism Center is hopeful that the results of the project will encourage the research community to concentrate its efforts and conduct more research in areas that have not been studied adequately. In addition, research on all treatments should be extended to appropriate age groups, treatment targets, and diagnostic populations.
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Dissemination
“Families have waited a long time for something like the National Standards Project, which will provide direction for parents and educators so they can be confident in their decisions, and not waste valuable time and money on unproven treatments.”
Lisa Borges / Executive Director / The Doug Flutie, Jr. Foundation for Autism, Inc.
National standards of practice can guide stakeholders toward effective responses to autism spectrum disorder (ASD). The standards also give policy-makers the tools they need to ensure that effective, scientifically sound treatment programs receive crucial funding.
Since 2009, the National Autism Center has disseminated the National Standards Report in a technical manual through broad web-based distribution. Due to high demand, we also make the National Standards Report available for purchase through our online bookstore.
Additional dissemination projects include:
- A Parent’s Guide to Autism and Evidence-based Practice, a comprehensive manual for families with criteria for selecting evidence-based services and programs that have been proven effective and are backed by scientific research. The manual is now available for download or purchase.
- Evidence-Based Practice and Autism in the Schools (Edition 2), a manual for public school systems outlining specific evidence-based program components, procedures, and implementation strategies. The manual is available for download or purchase.
- Findings and Conclusions: National Standards Project, Phase 2, an update to the summary of empirical intervention literature (published in the National Standards Report in 2009) that includes studies evaluating interventions for adults (22+) which have never been systematically evaluated before now. The report is now available for download.
- Professional training in how to implement the national standards.
Support for the National Standards Project
The National Autism Center is pleased to share expressions of support for the National Standards Project from individuals, organizations, and educational institutions throughout the country.
“After an autism diagnosis, families are extremely overwhelmed with the sheer number of treatments and therapies they find on the internet and through other resources. Families have waited a long time for something like the National Standards Project, which will provide direction for parents and educators so they can be confident in their decisions, and not waste valuable time and money on unproven treatments. The Project also recognizes the fact that every child responds differently to treatments and encourages families to rely on other factors in addition to research findings.”
Lisa Borges
Executive Director, The Doug Flutie, Jr. Foundation for Autism, Inc.
Framingham, Mass.“As a speech pathologist, I found The National Standards Project Report to be particularly helpful as it described, scientifically, Established Treatment options and identified the common process they employed. Armed with the knowledge that the preponderance of evidence supports behaviorally based interventions, I am now able to boldly go forward with my “less traditional” speech and language treatment approaches. This report has also encouraged me to try a variety of new behavior based strategies knowing that the foundation on which these interventions were developed is indeed “best practice.” I highly recommend that this document be reviewed by all professionals involved in the treatment of ASDs and believe that students and interns should adopt this document as their autism intervention Bible.”
Jennifer L. Brock, M.S., CCC-SLP
Speech Language Pathologist
University of Nebraska Medical Center
Omaha, Neb.“The marriage of service and science has always been a priority of the authors of the National Standards Project (NSP). In order to treat persons with autism in an ethical manner, we must have the science to back up all that we do. This NSP may be the most important document that parents and practitioners ever read and the most important weapon in their arsenal to fight autism.”
Marjorie H. Charlop, Ph.D.
Professor of Psychology, Claremont McKenna College
Director, The Claremont Autism Center
Claremont, Calif.“The Findings and Conclusions Report represents an invaluable resource to parents, educators, service providers, and others in search of comprehensive information about “what works” in the education and treatment of individuals with ASD. It is at once scientific, succinct, and easily accessible. In addition to developing a user-friendly guide to inform practice within the context of four hierarchical categories of scientific rigor, this volume serves as a foundation from which to build as consumers consider implications for both research and practice. I have no doubt that many will benefit from having this reference readily available to them as a bridge between what we have learned from past similar reports and what we still need to learn about the provision of services for individuals with ASD.”
Richard J. Cowan, Ph.D., NCSP
Associate Professor & Coordinator
School Psychology Program, Kent State University
School of Lifespan Development and Educational Sciences
Kent, Ohio“The National Standards Report is not the final word on treatment effectiveness in autism — indeed, it is intended to start rather than finish an important conversation — but it may be the best available word. It provides a snapshot of what the available research currently tells us and of what additional research is needed. It also reveals how thinking critically about evidence can lead to surprises in the form of both well-known interventions that lack adequate research support and controversial interventions that are better supported than critics might imply. Yes, we need well-trained professionals to deliver autism therapies, and we need researchers to empirically evaluate each therapy to the best of their ability. But we also desperately need systematic, integrative efforts like this one from the National Autism Center that help us to understand what existing efforts in treatment delivery and research are teaching us.”
Thomas Critchfield, Ph.D.
Past President, Association for Behavior Analysis International President-Elect,
Division 25 of the American Psychological Association
Normal, Ill.“With the rapid rise of services for individuals with autism, it is critical that practitioners and families are provided objective information regarding the effectiveness of these services. It serves the very important function of protecting families and practitioners from unwarranted claims of effectiveness. This report identifies the gaps in our knowledge about effective services for children with autism and should guide researchers as they seek to fill these gaps.”
Ronnie Detrich, Ph.D., BCBA
Senior Fellow, Wing Institute
Oakland, Calif.“Given the complexity of children with autism, it is nice to know that we as providers can have a variety of research-based treatments from a variety of orientations that have been “established as effective” or that have “emerging support.” I look forward to future research in this area, especially concerning how these treatments have been applied outside research settings and what research has shown about their effectiveness when implemented outside a controlled environment.”
Melanie DuBard, Ph.D., BCBA Psychologist
Kennedy Krieger School-Fairmount Campus
Baltimore, Md.“I predict that the National Standards Project Report will quickly become an invaluable resource for Developmental/Behavioral Pediatricians and other physicians who practice in the field of Autism Spectrum Disorders. Our goal of providing evidence-based treatment for children with ASDs requires the integration of appropriate and effective biomedical and educational/behavioral treatments. The outcomes of this comprehensive project clearly report the evidence supporting educational and behavioral treatments and will greatly assist us as we collaborate with families, caregivers and other professionals in selecting the ‘best’ treatments for individual children with ASDs.”
Cynthia R. Ellis, M.D.
Associate Professor of Pediatrics and Psychiatry Munroe Meyer Institute for Genetics and Rehabilitation
University of Nebraska Medical Center
Omaha, Neb.“In a field rife with fads, pseudoscience, and popular, yet unproven, interventions, the findings of the National Standards Project are a welcome and much-needed counterbalance to much of the hyperbole for both professionals and families. This thoughtful and comprehensive review of the peer-reviewed research on autism intervention confirms the effectiveness of interventions based on the principles of applied behavior analysis, highlights other interventions with promise, and places an appropriate warning label on those interventions with little, if any, research base. Given the unprecedented rate with which new research is being funded, conducted, and published, the only real challenge for National Autism Center is to now keep updating their findings so they stay as valid and useful as they are today.”
Peter F. Gerhardt, Ed.D.
President & Chair, Scientific Council Organization for Autism Research
Arlington, Va.“We support the National Autism Center’s efforts in the creation of the National Standards Project. We believe the National Standards Report will help parents navigate the often confusing and sometimes conflicting information available on autism.”
Cariann Harsh Director, Autism Division,
Department of Developmental Services
Boston, Mass.“Children with autism deserve access to practices and strategies that are evidence-based. Too often trendy ideas have outstripped hard evidence. This report provides an important step toward defining practices that work, practices that are practical, and practices that can be adapted to fit local contexts, families, and children.”
Robert Horner, Ph.D.
Alumni-Knight Professor,
Special Education Department of Special Education and Clinical Sciences, University of Oregon
Eugene, Ore.“The National Standards Report provides a resource that is unsurpassed in its usefulness. With the information from this systematic, intense review of the available ASD treatment research, I now feel confident in making treatment recommendations to families and implementing treatment strategies in my practice. It is a resource that should be utilized by all practitioners working with families who have children on the autism spectrum, and is written in a very user-friendly format that creates easy accessibility for both practitioners and families.”
Melissa Hunter, Ph.D.
Licensed Psychologist, SunPointe Health
State College, Pa.“As a special education teacher, I find the National Standards Report to be extremely beneficial in helping to provide a meaningful education for my students as well as useful research-based resource to share with parents. It is helpful knowing that there are 11 Established Treatments that have proven evidence of effectiveness. As teachers and parents are faced with so many choices, being able to focus on the treatments that are effective saves both time and disappointment.”
Jennifer Jettner, M.Ed.
HOPE Educator of the Year, Autism Society West Shore 2009
Spring Lake, Mich.“The National Standards Project is a vitally important effort. As the parent of a newly diagnosed child, I found myself overwhelmed with the sheer volume of information that I needed to absorb. The National Standards Project provides a coherent, evidence-based guide to treatment approaches for ASD, and I am certain it will remain an essential reference for our family as we advocate for our son’s best interests.”
Regina LaRocque, M.D., M.P.H.
Parent of a child on the autism spectrum
Assistant Professor of Medicine, Division of Infectious Diseases
Massachusetts General Hospital/Harvard Medical School
Boston, Mass.“Every day at Autism New Jersey, we hear from parents and professionals who desperately want to provide the most effective interventions for their loved one(s) or learner(s) with autism spectrum disorders. The National Standards Project objectively analyzes the evidence behind each treatment. This invaluable resource should empower caregivers with the confidence that they are focusing their financial and emotional resources on the treatments that are most likely to be successful. We’re pleased to add the National Standards Project to our arsenal of support for the autism community.”
Linda Meyer, Ed.D, MPA, BCBA-D,
CPT Executive Director Autism New Jersey
Ewing, N.J.“The findings of the National Standards Project are presented in a fair and balanced manner, with limitations and caveats clearly explained. I believe this report and future versions will provide parents and practitioners with a clear, empirically guided tool to aid in their decision making when choosing appropriate treatments for individuals with ASD.”
Victoria Moore, Psy.D.
Clinical Evaluator
Southeast Missouri State University Autism Center for Diagnosis and Treatment Cape
Girardeau, Mo.“In an era when everyone is asking ‘Where’s the evidence?’ about treatments for individuals with Autism Spectrum Disorders (ASD), the results of the National Standards Project provide the answers in a clearly articulated, understandable, and thorough report. To date, this report is the most comprehensive, critical review of the literature on focused intervention practices involving participants with ASD. It will provide guidance for service providers and families in search of the most efficacious practices. I expect this report will be a tool that is used to guide practice well into the future.”
Samuel L. Odom, Ph.D.
Director, FPG Child Development Institute Principal Investigator,
National Professional Development Center on Autism Spectrum Disorders
University of North Carolina at Chapel Hill Chapel Hill, N.C.“After getting a diagnosis of autism, the first question we had is “What do we do now?” This information from the National Standards Project can help answer that question. It contains information that parents can use to decide which treatment(s) best fit their child.”
Parent of a child on the autism spectrum
Millard, Neb.“This very thorough analysis will be helpful to both families and clinicians in navigating the maze of treatments for children with autism spectrum disorders.”
Deirdre B. Phillips
Executive Director,
Autism Consortium
Boston, Mass.“The National Standards Project fills an important gap in our current practice standards, by providing families and professionals a succinct tool for comparing the evidence basis of different treatments. The project has accomplished the impressive feat of summarizing the available treatment literature in an intelligent and highly usable format. Not only does the reader learn about whether a given treatment has scientific support in general; that information has been further described by diagnosis, age, and the behaviors or skills that are impacted. It is a monumental endeavor that will be truly helpful for families looking for information about the utility of the myriad treatments available for autism spectrum disorders. I look forward to being able to share this information with the families I work with and the health service providers I train.”
Jennifer Phillips, Ph.D.
Director of Assessment Training
Stanford Autism Center at Packard Children’s Hospital
Clanford, Calif.“Individuals with autism spectrum disorders and their families expect that an evidence base to ensure appropriate interventions guide the professionals who work with them. The National Standards Project has been a thoughtful, rigorous process over the course of several years to create a document through careful analysis of the available research to provide this needed guidance. It is a significant contribution to the autism community in identifying those interventions most likely to lead to positive change for individuals affected by autism.”
Patricia A. Prelock, Ph.D., CCC-SLP Professor,
Communication Sciences Dean, College of Nursing & Health Sciences University of Vermont
Burlington, Vt.The project in its whole and the development of the Scientific Merit Rating Scale (SMRS) are reflective of an eloquent scientific approach to evaluating the degree of evidence in treatments/interventions provided to persons with ASD. The findings of the report provide invaluable information concerning strengths and limitations in current research as well as long-needed future directions. I will without doubt incorporate the National Standards Report along with the SMRS in my graduate courses.
Lise Roll-Pettersson Ph.D., BCBA
Associate Professor in Special Education Stockholm University
Sweden“Families and professionals have traditionally faced a daunting task in determining the best course of treatment for children and adolescents with autism. The results of the National Standards Project provide a long-awaited yardstick against which to measure possible treatment options. Established treatments have been identified as best practices and favorable outcomes have been described for specific skills, reducing deficits, different age groups, and the three diagnostic populations falling on the autism spectrum. The Standards are a useful tool for treatment selection in concert with family preferences and professional evaluations. This level of guidance holds huge promise to maximize the possibility that the best treatment can be selected for each individual with autism.”
Dennis C. Russo, Ph.D., ABPP
Chief Clinical Officer May Institute
Randolph, Mass.“Although much emphasis is being placed these days on ‘evidence-based practice,’ to most it is still a popular term to be somehow embraced, and yet is poorly understood. True evidence-based analysis requires pain-staking efforts at data collection and analysis that must be tempered with a deep understanding of the subject analyzed. In this document, the National Autism Center has succeeded in such an endeavor. This publication detailing suggested National Standards for the assessment of treatments for Autism Spectrum Disorders gets it right. The data analysis is impeccable, and the conclusions are as close to biased-free as can possibly be. The findings and conclusions should be embraced by the health care community at large as the benchmark work that it is.”
G. Bradley Schaefer, MD, FAAP,
FACMG Professor of Genetics and Pediatrics Founding Director,
Division of Genetics University of Arkansas for Medical Science
Little Rock, Ark.“The National Standards Report is a welcome and much-needed resource in the sea of confusion and misinformation often surrounding the education and treatment of individuals with Autism. This critical appraisal of the state of the evidence for the most commonly used treatment and educational approaches, and strategies, will provide professionals and families with a tool to assist in assuring that valuable time and resources are devoted to bringing evidence-based instruction to learners with the most challenges.”
Cathy Scutta, MS, OTR/L,
BCBA Lead Consultant,
Autism Initiative and CLM Project Pennsylvania Training and Technical Assistance Network
Harrisburg, Pa.“As I read the National Standards Report, I experienced feelings of gratefulness, validation, and hope. Gratefulness that professionals qualified to speak on the topic of treatment and intervention in autism had identified a systematic approach that would serve to guide and direct future efforts. Validation that many of my personal experiences and decisions in working with my son and his providers were (and are) reflective of an aspiration to established treatment practices. Hope that the collaborative efforts demonstrated within this report are indicative of a continuum of progress eventually leading to mainstream acceptance, implementation and support of established treatments for individuals with autism all across our country.”
Dawn Sidell, RN, BSN
Parent of a child on the autism spectrum
Executive Director, Northwest Autism Center
Spokane, Wash.“The National Standards Report does an incredible job of pulling together a huge amount of information regarding intervention for individuals with autism into a clear, readable, and most importantly, useful document. The explanation of the process is clear, and the intervention studies have been well specified to help treatment providers and families learn more about specific interventions and the research support behind them. The report offers a balanced view of research, family priorities, child needs, and clinical judgment in the section on how to choose specific treatment methods.”
Aubyn C. Stahmer, PhD, BCBA-D
Child and Adolescent Services Research Center
Rady Children’s Hospital
San Diego, Calif.“The National Standards Project is the most comprehensive analysis ever conducted about treatments for children and adolescents with an autism spectrum disorder. The National Standards Report provides the clear answers families need when making treatment choices. It presents accurate, up-to-date information on which treatments have the most evidence of effectiveness in a format that is easy for non-clinical individuals to understand. This will simplify the often overwhelming task parents face when deciding which interventions to use and provide reassurance that they are making the best choices for their children.”
Phillip S. Strain Director,
Positive Early Learning Experiences (PELE) Center Professor,
Ed. Psych & Early Childhood SPED University of Colorado, Denver
Denver, Colo.“Educated families and other consumers have increased the demand to close the gap between research and practice and to truly establish standard guidelines for evidence-based practice specific to individuals with ASD. Through a comprehensive and multi-tiered process involving a number of well-respected researchers and clinicians in the field, the National Autism Center has succeeded in deriving a definition of evidence-based practice to most effectively classify and categorize treatment studies within a phenomenally written document that is accessible to layperson, clinician, and researcher alike. This will be an essential document for parents, healthcare professionals, school personnel, and members of the scientific community in making important decisions about intervention.”
Naomi B. Swiezy, Ph.D.,
HSPP Clinical Director, “
Christian Sarkine Autism Treatment Center
Riley Hospital for Children and the Indiana University School of Medicine
Indianapolis, Ind.“In the often contentious field of autism, the National Standards Project has produced a thoughtful, user-friendly evaluation of commonly recommended treatments, complete with recommendations for choosing the best one(s), limitations of their work, and a promise to expand their scope in the near future. This should be a treasured reference for parents and professionals alike.”
Jo Webber, Ph.D. Professor,
Special Education Executive Director,
Clinic for Autism Research, Evaluation, and Support (CARES)
College of Education, Texas State University
San Marcos, Tex.“This report gives us guidance in taking our first steps toward developing a treatment plan for our child. We feel confident that we are making the best choices for our son, since the information in this report is derived from sound scientific study. Once the sting from the autism diagnosis has subsided, and as a parent you are able to move forward, this information is your next step.”
Rebecca Woodcock, M.Ed.
Parent of a Child With Autism
Grade 2 Special Needs Teacher
Fall River, Mass.“The No Child Left Behind (NCLB, 2002) Act mandates that educators use scientifically based research methods. Prior to this report is has been difficult for professionals and families to identify and evaluate commonly used interventions for students on the spectrum. The National Standards Report provides a comprehensive, unbiased analysis of the treatments available. It will be an invaluable resource for school districts and others in the field of autism spectrum disorders.”
Annette Wragge State Coordinator,
NE ASD Network University of Nebraska, Lincoln
Lincoln, Neb.“Individuals with autism can and do lead meaningful, productive lives. Effective services and supports in childhood can contribute greatly to life outcomes. With the plethora of information available, it is incredibly difficult for families and professionals to discern an appropriate treatment path. The National Standards Project will provide guidance, encourage families and service providers to make informed decisions, and promote the use of evidence-based treatments. And, with the implementation of these standards, our outcome will be citizens with autism who move into adulthood with increased skills and the ability to contribute their talents to our diverse communities.”
Patricia Wright, Ph.D, M.P.H.
National Director, Autism Services, Easter Seals, Inc.
Chicago, Ill.
Experts Panel and Advisors, Phase I
Chair
Susan M. Wilczynski, Ph.D., BCBA
Advisors
Carl J. Dunst, Ph.D.
Dean L. Fixsen, Ph.D
Gina Green, Ph.D., BCBA-D
Catherine E. Lord, Ph.D.
Dennis C. Russo, Ph.D., ABBP, ABPP
Expert Panelists
Susan M. Wilczynski, Ph.D., BCBA (Chair)
Jane I. Carlson, Ph.D., BCBA
Edward G. Carr, Ph.D., BCBA
Marjorie H. Charlop, Ph.D.
Glen Dunlap, Ph.D.
Gina Green, Ph.D., BCBA-D
Alan E. Harchik, Ph.D., BCBA-D
Robert H. Horner, Ph.D.
Ronald Huff, Ph.D.
Lynn Kern Koegel, Ph.D., CCC-SLP
Robert L. Koegel, Ph.D.
Ethan S. Long, Ph.D., BCBA-D
Stephen C. Luce, Ph.D., BCBA-D
James K. Luiselli, Ed.D., ABPP, BCBA-D
Samuel L. Odom, Ph.D.
Cathy L. Pratt, Ph.D.
Robert F. Putnam, Ph.D., BCBA
Joseph N. Ricciardi, Psy.D., ABPP, BCBA
Raymond G. Romanczyk, Ph.D., BCBA-D
Ilene S. Schwartz, Ph.D., BCBA
Tristram H. Smith, Ph.D.
Phillip S. Strain, Ph.D.
Bridget A. Taylor, Psy.D., BCBA
Susan F. Thibadeau, Ph.D., BCBA-D
Tania M. Treml, M.Ed., BCBA
Conceptual Model Reviewers
Brian A. Boyd, Ph.D.
Anthony J. Cuvo, Ph.D.
Ronnie Detrich, Ph.D., BCBA
Wayne W. Fisher, Ph.D.
Lauren Franke, Psy.D., CCC-SP
William Frea, Ph.D.
Lynne Gregory, Ph.D.
Kara Anne Hume, Ph.D.
Penelope K. Knapp, M.D.
John R. Lutzker, Ph.D.
David McIntosh, Ph.D.
Gary Mesibov, Ph.D.
Patricia A. Prelock, Ph.D., CCC-SLP
Sally J. Rogers, Ph.D.
Mark D. Shriver, Ph.D.
Brenda Smith Myles, Ph.D.
Coleen R. Sparkman, M.A., CCC-SLP
Aubyn C. Stahmer, Ph.D., BCBA-D
Pamela J. Wolfberg, Ph.D.
John G. Youngbauer, Ph.D.
Results of the National Standards Project, Phase 1
Thank you for your interest in the results of the National Standards Project, Phase 1!
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