Dear Ms. Berlinger: Twenty-five years ago, I read a book about the Son-Rise program as part of an undergraduate psychology course. It was a compelling story. To date, there has not been a single study documenting the effectiveness of this method. This is not unique to Son-Rise. Autism treatment has become a multi-million dollar industry with those who cobble together the most touching and heart-wrenching testimonials earning the greatest profit. Many journalists, as exemplified by this article, share these stories for public consumption without asking critically important questions such as: 1) Are there any published research articles documenting the efficacy of the method? 2) If not, why not? 3) How much does the intervention cost? Are these costs reasonable? 4) Who may benefit financially from your article? In reference to autism treatment, you quote Lindee Morgan, “There’s no way to say one is better than the other.” I completely disagree. Research in peer-reviewed journals can tell us which way is better than the other. This is done for the vast majority of disorders. Without research, treatment for conditions such as childhood leukemia and diabetes would be a veritable free-for-all. Sadly, many of those who provide autism treatment seem to have a pass on having to prove their methods in verifiable and objective ways, and instead are given free rein to make a lot of money from parents desperately trying to help their children. Parents of children with autism should not have to work so hard to find effective interventions. Let me be clear: there are over 100 treatments proposed for autism and most lack any scientific support. Instead, parents deserve access to a community that values science over profit, expects accountability from all treatment providers, and gravitates towards methods already proven to be effective. David Celiberti, Ph.D., BCBA-D Association for Science in Autism Treatment 2010-02-20 29 http://www.tallahassee.com/article/20100209/BREAKINGNEWS/100209010/Autistic-child-responding-well-to-learning-option February 19, 2010 Dear Ms. Hjalmarson: Thank you sharing this important story with your readers. We applaud the Highlands Center for Autism for making such a commitment to these precious children and for relying on objective data to guide efforts to help them realize their fullest potential. Of the dozens of treatments for autism, applied behavior analysis is the only treatment that already has a solid body of scientific support. For many other treatments, there are just promises, media hype, and glowing testimonials. As you mentioned, for some of the more impaired children, skills are indeed broken up into small units and taught systematically. For less impaired children with autism, the need for such structure and repetition is lessened. We do want to provide a bit more information about your reference to the expense and tedious nature of this treatment. In contrast to other disabilities, autism has a significant impact on a child’s social relatedness, communication, skills, and ability to learn across all domains. It would be naive to think that a simple intervention such as a pill, diet, or swim with a dolphin could eradicate such profound deficits. It is also important to bear in mind that children with autism who make significant gains in the early years of intervention will require fewer services as older students and as adults. Millions of dollars can be saved per child over the course of his or her lifespan. Given that fact, a $60,000 per year investment benefits everyone. David Celiberti, Ph.D., BCBA-D President, Association for Science in Autism Treatment 2010-02-16 28 http://www.kentucky.com/964/story/1141477.html?storylink=addthis\ Dear Ms. Kelland: The Lancet can retract the 1998 article authored by Dr. Wakefield. Unfortunately, what cannot be retracted is the impact this article has had on promulgating misinformation about the cause of autism, increasing the number of unvaccinated children, and creating a media frenzy that allowed celebrities to be accepted as experts whose views, however misguided, are given more airtime than those of scientists. Perhaps the saddest outcome of all, is that our national dialogue has been hijacked away from findings that are actually well established in the scientific literature (i.e., applied behavior analysis represents the treatment with the strongest scientific support). There are important lessons to be learned here. The media frames the dialogue and when bad choices are made, children with autism and their families inevitably suffer, along with the public as a whole. Members of the media should stop showcasing single studies as if they represent complete paradigm shifts and look rather to bodies of evidence, particularly when that evidence is shared by researchers with little to gain financially from publication. The very best outcomes for children with autism stand on the shoulders of good science not at the whim of pseudoscience. David Celiberti, Ph.D., BCBA-D President, Association for Science in Autism Treatment 2010-02-02 27 http://www.washingtonpost.com/wp-dyn/content/article/2010/02/02/AR2010020203480.html December 7, 2009 Dear Mr. Alexander: On behalf of the Association for Science in Autism Treatment (asatonline.org), we are writing to you about your article entitled, “Dark Shadows Loom Over ‘Facilitated’ Talk” (December 2, 2009). This piece described a gut-wrenching experience faced by parents of an individual with autism who, through facilitated communication, falsely accused her father of sexual abuse. We want to formally extend our appreciation for this story, which highlighted a tragedy far too many families have experienced. In particular, we want to commend you for including a summary of research conducted by Doug Wheeler, who found that facilitated communication (FC) was not effective. Readers might have benefited from additional information surrounding the lack of evidence for FC – as well as the established evidence for other interventions. There is no methodologically sound research to support the effectiveness of FC and numerous peer-reviewed scientific analyses have replicated the findings of Wheeler. A number of professional organizations (e.g., American Academy of Pediatrics, Association for Behavior Analysis International, American Speech-Language-Hearing Association, and others) have issued policy statements condemning facilitated communication and have advised against its use. These policy statements were put forth in the mid 1990s and have remained in force. Moreover, effective interventions to teach communication and language have been established, such as functional communication training, mand training, Picture Exchange Communication System (PECS), comprehensive behavioral treatment, and others. A summary of alternative intervention techniques for which there actually exists scientific support would have been beneficial to those readers interested in more viable interventions. Sincere regards, Florence D. DiGennaro Reed, Ph.D., BCBA-D David Celiberti, Ph.D., BCBA-D, President, Association for Science in Autism Treatment 2009-12-15 26 http://www.msnbc.msn.com/id/34212528/ns/health-mental_health/ Dear Ms. Tsouderos and Ms. Callahan: On behalf of the Association for Science in Autism Treatment (ASAT), we would like to commend you for your recent article entitled, “Autism treatment: Science hijacked to support alternative therapies” (November 23, 2009). Parents of children with autism are bombarded with treatment options, often to the point of confusion. This article correctly informs the reader that physicians are making grossly inaccurate claims about the scientific evidence behind unproven biomedical treatments, as well as about the “recovery” of children who undergo these treatments. Such claims raise false hopes and distance parents from treatments proven to be effective. While we especially appreciate your review of the research and court testimony demonstrating the lack of empirical support for these alternative therapies, we wish that you would have emphasized how important it is for parents to rely on science-based treatments for their children with autism. For example, many of the interventions grounded in the principles of Applied Behavior Analysis (ABA) have copious scientific evidence supporting their efficacy for children with autism. There is an urgent need to promote effective, science-based autism intervention, and we commend the Tribune for taking a strong stand against unproven, potentially life-threatening interventions. ASAT (www.asatonline.org) agrees that the pursuit of unproven, potentially dangerous “treatments” saps family resources and takes time away from effective interventions that can make a lasting difference. Thank you for your commitment to raising awareness about autism interventions. Sincerely, Hannah Hoch, Ph.D., BCBA-D Daniel W. Mruzek, Ph.D., BCBA-D, Board Member, Association for Science in Autism Treatment 2009-12-09 25 http://www.chicagotribune.com/health/chi-autism-science-nov23,0,240420.story?page=1 December 4, 2009 Dear Ms. Falco, On behalf of the Association for Science in Autism Treatment, I am writing about the article, “Study: Early Autism Intervention is Effective” (November 30, 2009). I am pleased that CNN is spotlighting research that examines the effectiveness of treatment for autism. With so many unexamined treatments available for children with autism, it is extremely important that we continue to promote treatments which are science based; thank you for doing this in your article. We are writing today to provide feedback and hopefully some clarification of a few statements that could lead to misunderstandings which may have unfortunate consequences. QUOTE: Half of the children were given community-based interventions or therapies. ASAT: According to the article in Pediatrics, those in the control group were referred to community-based interventions, but whether they accepted them is unclear. Furthermore, the mean hours of “intervention” received by that group was nine hours of individual therapy – nine hours of what they received is unclear. QUOTE: This is in contrast to traditional Applied Behavioral Analysis, which is delivered at a desk, next to the teacher or therapist who breaks down complex tasks into small components and then gives tangible reinforcements. ASAT: “Traditional ABA” has become a very ambiguous term, and seems to be inaccurately equated with rigid table-top therapy that creates robotic responses. Even thirty years ago, ABA-based treatments were not exclusively table-top work. Current ABA-based interventions deliver instruction in many settings, not just at a desk. The framing of this comparison of “traditional ABA” vs. Early Start Denver Model (ESDM) is analogous to one in which Chevy might suggest that their 2009 Camaro is much better than the “traditional Ford” and describe the features of a 1978 Ford car. Rather, a more accurate picture would describe the evolution of ABA, thanks to continued scientific research. The most problematic part of this quote is that ESDM describes itself as a developmental model based in applied behavior analytic principles, while this quote implies that the study is comparing two different things, ESDM vs. ABA. In reality it is comparing a developmental ABA-based approach (ESDM) with an unspecified community service, according to the authors of the article. QUOTE: Rogers says that parents can pick up the ESDM therapy methods quite easily… “They can learn this within six hours of working with therapists.” ASAT: This too is misleading – in the study, they had graduate level supervisors and baccalaureate therapists with at least two months of training and weekly supervision by a lead therapist. The therapy was delivered for 20 hours weekly (two 2-hour sessions daily for 5 days per week). In addition to this therapy, the parents were provided semi-monthly trainings and asked to utilize ESDM throughout – and reported another 16 hours of parent-provided therapy. So – either the children were receiving 36 hours of therapy per week - or the parents could not be easily trained, and therefore those hours should not count. QUOTE: "It's a very pleasing kind of therapy, kids are happy. It is play, and it can happen everywhere," Rogers explains. Dawson adds that this type of intervention builds on a fun, positive relationship with the therapist. This is a contrast to traditional Applied Behavioral Analysis (ABA), which is delivered at a desk, with the child sitting next to the teacher or therapist, who breaks down complex tasks into small components and then gives tangible reinforcements. ASAT: It is a mischaracterization to imply that ABA-based interventions are not positive, fun or relationship oriented. In fact, behavior analysts incorporate child choice, motivating social activities and “fun” into their sessions. One of the primary goals of ABA-based intervention is to find out how the child learns best and then to utilize a range of motivating fun activities (including social interaction) to facilitate learning. Intervention goals are directed toward improving a wide range of social skills, including the development of joint attention and peer relationships. In conclusion, this is an exciting study, and ASAT is thrilled to see the progress in the examination of interventions for autism; however, we are concerned about misrepresentation in the media, especially since most people do not necessarily have access to the journal, Pediatrics, for first-hand information. This is especially important with so many parents fighting for funding for treatment. According to the above-mentioned quotes, insurance companies now have a source that says that in six hours, parents can learn an effective treatment. Insurance carriers could utilize this piece to deny requests for needed intensive therapy, either outright, or only allowing for reimbursement up to 15 hours per week. Either response would be a sad outcome from this exciting research. Joshua K. Pritchard, M.S., BCBA Board Member, Association for Science in Autism Treatment 2009-11-30 24 http://www.cnn.com/2009/HEALTH/conditions/11/30/autism.study/index.html Dear Ms. Darula: On behalf of the Association for Science in Autism Treatment (ASAT), we are writing to you in regard to your article, “Discover Autism – A Wide Range of Therapy Programs” (August 31, 2009). While we appreciate your efforts to raise awareness of treatment of the disorder, the article contains misleading information and suggests that all therapies are equally effective. Moreover, the inaccurate content may serve to perpetuate common myths and misconceptions, which has the potential to negatively impact decisions regarding service delivery. The latter may result in delays in the application of an effective evidence-based treatment or, even worse, cause harm to consumers of services. We would like to draw your attention to the statements in the story of most concern. They are listed below for your reference followed by specific comments. QUOTE: Sometimes a combination of treatments and programs will yield the best results, but it should be known that the condition generally requires treatment for the life of the patient and the caregiver should maintain flexibility of approach. ASAT COMMENT: There is research to suggest that a combination of approaches does not improve outcomes for individuals with autism. Although treatment may be life-long, there is no evidence to suggest that flexibility of approach yields better results.1 QUOTE: …it is important to remember that there are a lot of avenues to explore as the chase for the definitive cure goes on. ASAT: Significant efforts are being made to identify the cause and early signs of autism. At the present time, there is no definitive cure for autism. While hundreds of treatment options for parents and individuals with autism exist, a majority of these lack scientific evidence and are promoted via anecdotal claims by parents and non-professionals. Treatment procedures that fall within applied behavior analysis have been shown to have strong empirical support. QUOTE: Behavioral therapies deal with modification techniques, to assist the patient to gain job skills and to enable them to function in their environment. For example, Applied Behavior Analysis, or ABA, entails the teaching of skill oriented activities. In this practice, patients are rewarded as they learn enjoyable skills, and as their behavioral skills continue to develop. ASAT: The terminology in the above quote is somewhat outdated. Applied behavior analysis is a science with a wide array of treatment procedures to improve socially significant behavior. One of its principles includes reinforcement—rather than reward—to increase desired behaviors/skills. QUOTE: Many critics still feel that the approach is overly “robotic,” and that it doesn’t really encourage the child to be spontaneous while they’re trying to adapt to the world around them. ASAT: As stated previously, research has shown that applied behavior analysis includes teaching techniques to facilitate language2, choice-making3, socialization4, joint attention5, and independence6. Studies have also documented gains in these areas across settings, people, and materials7. This evidence is in direct contrast to claims that individuals become robotic and lack spontaneity. QUOTE: When it comes to supplemental therapies, many people with autism respond favorably to sensory stimulation. Patients are encouraged to hold objects with various textures or listen to music, for example. The Tomatis approach utilizes the playing of a loop of music, for several hours each and every day, in the hope of improving the child’s attention and concentration. ASAT: There is no empirical evidence supporting the benefits of auditory integration therapy, and research on sensory integration is limited and lacks well-controlled experimental designs. Further, the article does not clearly describe what is meant by “people with autism respond favorably to sensory stimulation.” Although an individual may enjoy holding an object or listening to music (as evidenced by smiles or a happy affect), this enjoyment is unrelated to actual improvement in symptoms or learning important skills. Given the costs associated with these treatments as well as the lack of scientific evidence, suggesting they are a viable treatment option is irresponsible. (Please refer to http://www.asatonline.org/resources/treatments/auditory.htm for more information on AIT.) QUOTE: Medical treatments for autism include the use of vaccines and some more, particularly controversial therapies, including chelation, which involves the injection of a form of acid into the blood to remove or improve metabolic functioning. ASAT: This quote contains an error—vaccines are not used as a form of medical treatment for autism. Although there has been debate regarding the role of vaccines in the cause of autism, the Centers for Disease Control and Prevention8, National Institutes of Health9, American Academy of Pediatrics10, and others11 have documented that there is no evidence suggesting a link between autism and vaccines. The science of applied behavior analysis and its application to the treatment of children with autism are often inaccurately portrayed in the media. Unfortunately, the article, “Discover Autism – A Wide Range of Therapy Programs,” contributes to the misconceptions of interventions for individuals with ASD. Specifically, applied behavior analysis is underrepresented and other non-science based interventions are presented as viable, effective options without disclosure of the lack of research or potential side effects. Sadly, this kind of misinformation may result in parents seeking potentially dangerous and costly treatments to the exclusion of implementing empirically-supported treatment procedures, thereby wasting precious time in a child’s life. It is important for parents and caregivers to access accurate information regarding autism treatments in order that they may make wise decisions for their children. For more information, please visit http://www.asatonline.org/resourcesautismtreatments.htm. Sincere regards, Florence D. DiGennaro Reed, Ph.D., BCBA-D Mary E. McDonald, Ph.D., BCBA-D Board Member, Association for Science in Autism Treatment ___________________________ 1 Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G. & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26 (4), 359-383. 2 Carter, C. M. (2001). Using choice with game play to increase language skills and interactive behaviors in children with autism. Journal of Positive Behavior Interventions, 3(3), 489-497; Krantz, P. J., Zalenski, S., Hall, L. J., Fenske, E., & McClannahan, L. E. (1981). Teaching complex language to autistic children. Analysis & Intervention in Developmental Disabilities, 1(3-4), 259-297. 3 Carter, p. 489-497. 4 Carter, p. 489-497; Hupp, S. D., & Reitman, D. (2000). Parent-assisted modification of pivotal social skills for a child diagnosed with PDD-NOS: A clinical replication. Journal of Positive Behavior Interventions, 2(3), 183-187; Kasari, C., Freeman, S., & Paparella, T. (2006). Joint attention and symbolic play in young children with autism: A randomized controlled intervention study. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 47(6), 611-620; Krantz, P. J., Zalenski, S., Hall, L. J., Fenske, E., & McClannahan, L. E. (1981). Teaching complex language to autistic children. Analysis & Intervention in Developmental Disabilities, 1(3-4), 259-297; Kroeger, K. A., Schultz, J. R., & Newsom, C. (2007). A comparison of two group-delivered social skills programs for young children with autism. Journal of Autism and Developmental Disorders, 37, 808-817. 5 Kasari, p. 611-620. 6 Koegel, L. K., Koegel, R. L., Hurley, C., & Frea, W. D. (1992). Improving social skills and disruptive behavior in children with autism through self-management. Journal of Applied Behavior Analysis, 25(2), 341-353; Newman, B., Buffington, D. M., O’Grady, M. A., McDonald, M. E., et al. (1995). Self-management of schedule following in three teenagers with autism. Behavioral Disorders, 20(3), 190-196. 7 National Autism Center (2009). National Standards Report. Randolph, MA: National Autism Center. 8 Immunization Safety Review Committee, Board on Health Promotion and Disease Prevention, Institute of Medicine. (2001). Immunization safety review: measles-mumps-rubella vaccine and autism. Stratton K, Gable A, Shetty P, and McCormick M (Eds.). Washington, DC: National Academy Press. 9 Ibid. 10 Halsey N, Hyman S, and The Conference Writing Panel. (2001). Measles-mumps-rubella vaccine and autistic spectrum disorders. Pediatrics, 107(5), e84-107. 11 Immunization Safety Review Committee, op. cit. 2009-09-28 23 http://autisticsite.com/discover-autism-a-wide-range-of-therapy-programs July 31, 2009 On behalf of the Association for Science in Autism Treatment (asatonline.org), we would like to commend Ms. Roni Caryn Rabin for her recent article entitled “Regimens: Restrictive Diets May Not Be Appropriate for Children With Autism” (July 27, 2009). Parents of children with autism are bombarded with treatment options, often to the point of confusion. Rabin’s piece correctly informs the reader that gluten-free and casein-free diets have no scientific evidence supporting their effectiveness. This article underscores how important it is for parents of children with autism to rely on treatments such as applied behavioral analysis (ABA), that have copious scientific evidence – including several hundred peer-reviewed research studies – to support their efficacy. Geoffrey DeBery, M.A., BCBA Barbara Jamison, Board Member, Association for Science in Autism Treatment 2009-08-25 21 http://www.nytimes.com/2009/07/28/health/28autism.html July 28, 2009 Dear Editor: On behalf of the Association for Science in Autism Treatment (asatonline.org), we are writing to you in connection with your Health Watch story on Rethink Autism that aired on 7-23-09. In particular, we wanted to commend the piece for highlighting that applied behavior analysis (ABA) is considered a “gold standard”—a statement supported by several hundred peer-reviewed studies documenting the success of this approach to learning and endorsement by the Surgeon General and other education officials. Moreover, the journalist nicely depicted teaching as looking like play and fun, which is possible through the appropriate use of positive reinforcement and individualized instruction. The latter are considered important aspects of good teaching within ABA. Unfortunately, our science and its application to the treatment of children with autism are often inaccurately portrayed in the media. As you might imagine, we were quite pleased with your depiction and coverage of a source of support for families in need. Sincere regards, Florence D. DiGennaro Reed, Ph.D., BCBA Barbara Jamison, Board Member, Association for Science in Autism Treatment ASAT Editor's Note: To learn more about Rethink Autism, please visit www.rethinkautism.com - BJ 2009-07-29 20 http://wcbstv.com/video/?id=130578@wcbs.dayport.com March 5, 2009 Dear Editor; I am writing to you on behalf of the Association for Science in Autism Treatment (ASAT) in response to your March 4th article entitled, “Can a DVD Teach Kids with Autism to Understand Emotions?” by Melissa Lafsky. While I am grateful for the attention paid to autism and the focus on Baron-Cohen’s promising direction in the field, I wanted to draw your attention to a misleading statement which might be either a typographical error or possible confusion of the author. Please review the following quote from the article: Many parents are focusing on physical methods of treatment, such as medications and special diets, and some are even coughing up thousands—to the point of taking out second mortgages and emptying savings accounts—on often controversial and possibly risky treatments such as applied behavioral analysis, chelation, and hyperbaric oxygen chambers. But a method that has gained significant support from researchers and parents alike is behavioral therapy, or the study and analysis of autistic behavior with an eye toward offsetting key symptoms of the disorder. The first sentence suggests that Applied Behavior Analysis (ABA) is a “controversial” and “possibly risky” treatment. In fact, ABA is the only treatment for autism with empirical support. As a result of overwhelming evidence of its effectiveness, ABA is endorsed by health officials, such as the Surgeon General, as well as education officials, such as the New York State Department of Education. In contrast to the first sentence, the next sentence describes “behavioral therapy” as a research-based treatment. This is a term that is often used colloquially to describe ABA. While this probably suggests that the first sentence was an error, a mother new to the diagnosis of autism for her child might read this article and conclude that ABA is potentially harmful. This robs the child of her best chances for growth. To remedy this situation, we respectfully request that you publish a correction clarifying that ABA is a safe and effective treatment for autism spectrum disorders. If you or the author has further questions, please do not hesitate to contact me. I’d be happy to speak with you and provide any information that you might need. Also, I encourage you to review our website at www.asatonline.org. Thank you again for your commitment to raising autism awareness. Sincerely, Beth Glasberg, Ph.D., BCBA Board Member Association for Science in Autism Treatment 2009-03-06 19 [ http://discovermagazine.com/2009/mar/04-can-a-dvd-teach-kids-with-autism-to-understand-emotions ]http://discovermagazine.com/2009/mar/04-can-a-dvd-teach-kids-with-autism-to-understand-emotions