COSAC Position Statement on
Treatment Recommendations(Adopted by the COSAC Board of Trustees on August 20, 2002
Revised on January 24, 2004)
Since its founding in 1965, COSAC’s primary mission has been to ensure that all people with autism receive appropriate, effective services and to enhance the overall awareness of autism in the general public. To attain this goal, COSAC provides information, education, and advocacy services. These services develop, improve, and expand programs for individuals with autism. COSAC is an organization whose members may espouse different philosophies and use various treatment modalities. Because of the diversity of methods that are considered and/or used in the treatment of autism, it is important to clarify COSAC’s position regarding the treatment of autism as it pertains to education and other clinical efforts. COSAC does so in order to inform our members, other organizations, government officials, and the greater public.
Those charged with improving the lives of individuals with autism have a complex task in terms of understanding, implementing, and evaluating treatments. While COSAC’s primary role is to educate parents and professionals so that they can make independent and informed decisions, COSAC also endorses the use of treatments that are individualized, positive, science-based, and shown to be effective.
Why use science as a guide when decidingupon treatments for children with autism?
Parents and professionals need a framework for decision-making that can provide 1) criteria to choose among interventions and 2) mechanisms to determine progress or lack thereof. Given that treatment should produce measurable skill gains, a system of accountability is essential. Such accountability is easily established when we use the structure and process that science offers.
What is behavioral science?
The scientific process includes testing hypotheses in a controlled manner to identify systematic relationships between an intervention and changes in a person’s behavior. Meanwhile, alternative explanations are systematically ruled out based on careful analysis of observational data. In other words, all likely explanations for a change in a person’s behavior are explored. It is likely that only one or a few interventions are the actual cause for the change in behavior. For example, if social interactions increase following behavioral treatment, other interventions such as dietary or medication changes also would have to be evaluated as the possible cause of change. Science relies on direct observation and objective measurement of a phenomenon, systematic arrangements of events, procedures to rule out alternative explanations for what is observed, and repeated demonstrations (called replications) by individuals working independently of one another. Good science is not
determined by popularity, longevity, or unsubstantiated claims. While no method is guaranteed to predict success, the scientific method does have built-in checks and balances. The scientific method emphasizes objective data, independent replication, and critical peer review. These processes increase the likelihood that the results are valid.
What is the best course of treatment for an individual with autism?
Comprehensive assessment of the individual’s abilities and preferences is the cornerstone of designing an intervention package that is most likely to be successful. An assessment provides information that is crucial to determine baseline levels of performance, reasonable criteria for acquiring and mastering goals, and the number and type of objectives to address. One also must assess the range of treatment alternatives, the purported advantages and disadvantages for the individual and his/her support system, and the likelihood of benefit for all involved. Ongoing monitoring also provides valuable information when determining if and how much of a given treatment is reasonable. In summary, some elements of successful programming include assessment, individualization, a focus on building functional skills, an enhanced quality of life in developmentally and age-appropriate ways, frequent parent and professional collaboration, and a system of monitoring to evaluate progress.
There are resources listed at the end of this position statement to assist in this effort.
What methods does COSAC endorse?
COSAC endorses those intervention packages that have been demonstrated to substantially improve an individual’s quality of life. Behavioral treatment offers a systematic and well-researched approach to teaching appropriate behaviors and decreasing inappropriate behaviors. This type of assessment and teaching is formally known as Applied Behavior Analysis (ABA) and is closely linked to Positive Behavior Supports (PBS). When this treatment is implemented in a positive, person-centered, and consistent manner, most individuals with pervasive developmental disorders expand their repertoire of skills and experience an increased quality of life
More specifically, research has demonstrated that individuals with autism make significant progress in learning new skills when teaching is highly structured, data-based, and clinically sound. Professionals who study and practice Applied Behavior Analysis have published hundreds of peer-reviewed studies demonstrating the effectiveness of ABA and PBS in teaching new skills and treating behavior problems. These successful outcomes have been replicated among numerous individuals with autism and independent investigators. Behavioral research employs sophisticated experimental methodology to clearly demonstrate how the change in behavior occurred, under what conditions, and the limitations of the procedure. ABA and PBS are grounded in the science of learning, a model of behavior that has been supported through laboratory and applied research.
The field of Applied Behavior Analysis includes structured and naturalistic methodologies for assessment and intervention. They include but are not limited to discrete trial training, incidental teaching, pivotal response training, natural environment training, mand (request-based) training, verbal behavior, fluency-based instruction, task analysis, descriptive assessment, functional analysis, and positive behavioral support. (For definitions and explanations of these topics, please see COSAC’s other publications on ABA.) As individuals’ learning styles vary, so should the educational package for each person with autism. Parents and professionals are encouraged to review the references at the end of this position statement for a more comprehensive description of ABA. Research information on these methods will be made available upon request.
Thus far, no other educational treatment approach has been subject to as much well-controlled research. Several studies have suggested little or no benefit from other treatments. This is not to say that other treatments do not have merit, simply that many treatments have not yet been systematically examined through research. As stated, COSAC promotes treatments that have been extensively studied in accordance with professional standards and determined reliable in improving the abilities of people with autism. Should other treatments yield demonstrated benefit, they would systematically be incorporated into the agency’s advocacy and clinical service efforts.
What methods are not recommend by COSAC?
Unfortunately, some methods that have been proposed to treat autism have not been proven effective for individuals with autism. A review of the available research on best practices leads COSAC to not recommend certain treatments: Psychoanalysis1, Facilitated Communication, Auditory Integration Training/Therapy, and Secretin (American Speech-Language-Hearing Association, 2004; Smith, 1996; Green, 1996; Green & Shane, 1994; Sandler et al., 1999). While it is possible that an individual will benefit from these approaches, research evidence suggests that the majority of individuals will not benefit in a meaningful way, or at all. Research information on these methods will be made available upon request.
What is COSAC’s position on treatments not mentioned above?(This section applies to all other treatments except those that COSAC recommends (Applied Behavior Analysis and Positive Behavior Supports) and does not recommend (Auditory Integration Training/Therapy, Facilitated Communication, Psychoanalysis, and Secretin). Clearly, COSAC recommends treatment approaches that have been systematically evaluated and found to be beneficial; the more research conducted on a particular treatment, the more information available to the consumer to determine the best course of action. Without this information, COSAC suggests that consumers proceed with caution and utilize the resources listed below to evaluate these options.
COSAC recognizes that the autism community is comprised of individuals who respond differently to various interventions. For this reason, parents and professionals must work together to develop the most appropriate and effective plan. The great number of proposed treatments for autism often complicates this task. Some view these proposed treatments as opportunities while others view them as experimental endeavors. COSAC views these options as experimental because the term conveys caution. Caution is appropriate in these endeavors because such interventions could lead to improvement, no change, or harm. COSAC recommends that consumers also adopt a hopeful skepticism to navigate these options.
Does COSAC specifically endorse any agencies or service providers?
No, COSAC does not specifically endorse any agencies or service providers. Given the diversity of training experiences and clinical skills necessary for all methodologies, it is understandable that not all providers will adhere to best practices within a specific treatment. Treatment providers who are inadequately or poorly trained, do not stay abreast of the state-of-the-art techniques, or do not comply with standards of professional practice may place consumers in undesirable and harmful situations. These deficits in professionalism occur across all treatment methodologies. In order to determine the quality of both the methodology and the provider, consumers are encouraged to conduct thorough background checks to ensure that they are working with professionals who are practicing effectively and ethically.
What resources can be used to make informed decisions?
Given the great value that is placed on a caregiver’s right to choose among a variety of interventions, COSAC provides detailed information on how to make wise choices. As previously mentioned, collaboration among parents and professionals is crucial. COSAC provides information on a variety of topics and the tools to help the caregiver evaluate programming.
What is the prognosis for someone with autism and why is there hope?
There is considerable variation in the abilities of people with autism. Some individuals may need extensive, lifelong support to function in home, vocational, and community settings, while others may need intermittent support in fewer areas. While effective and early intervention can greatly improve an individual’s prognosis, as of now, there are no definitive markers to predict a person’s level of functioning decades ahead. Thus, early treatment must be sought to address current deficits and teach new skills; such skills are likely to have a substantial impact on the person’s ability to interact with others and his/her quality of life. Together, parents and professionals can provide effective treatment. The autism community continues to advocate for research to improve intervention strategies, identify methods of prevention, and possibly develop a cure. COSAC is committed to these goals on behalf of people affected by autism.Footnote 1. Psychoanalysis is a specific type of psychotherapy and should not be confused with other types of therapy such as family, cognitive-behavioral, or behavior therapy. Some of these therapies can be helpful and effective in treating a variety of problems that can occur in all families.
Resources for making effective treatment decisionsAmerican Academy of Pediatrics. (2001). Policy statement: Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability. Pediatrics, 107, 598-601. www.aap.org/policy/re0049.html
American Speech-Language-Hearing Association. (2004). Auditory integration training.ASHA Supplement, 24, in press. www.asha.org
The Autism Biomedical Information Networkwww.autism-biomed.org
Autism Special Interest Group of the Association for Behavior Analysis. (2004). Guidelines for consumers of applied behavior analysis services.www.abainternational.orgAutism Society of America. (1993). Priorities of professional conduct. www.autism-society.org/society/priorities.html
Autism Society of America. (1997). Guidelines for theories and practice.www.autism-society.org/society/panel.htmlCeliberti, D. A., Buchanan, S. M., Bleeker, F., Kreiss, D., & Rosenfeld, D. (2004). The road less traveled: Charting a clear course for autism treatment. In COSAC’s Autism: Basic information (5th ed.). (800) 4-AUTISM in NJ. (609) 883-8100 outside NJ. www.njcosac.orgGreen, G. (1996). Evaluating claims about treatments for autism. In C. Maurice (Ed.),G. Green, & S. C. Luce (Co-Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals. Austin, TX: PRO-ED.
Green, G., & Shane, H. (1994). Science, reason, and facilitated communication. The Journal of the Association for Persons with Severe Handicaps, 19, 151-172.National Research Council. (2001). Educating children with autism. Committee onEducational Interventions for Children with Autism. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. www.nap.edu
The New Jersey Center for Outreach and Services for the Autism Community (COSAC).(2002). Resource packet for families and professionals. (800) 4-AUTISM in NJ. (609) 883-8100 outside NJ. www.njcosac.org
Organization for Autism Research (OAR). (2003). Life journey through autism: Aparent’s guide to research. Arlington, VA: Author.
Sandler, A. D., Sutton, K. A., DeWeese, J., Girardi, M. A., Sheppard, V., & Bodfish,J. W. (1999). Lack of benefit of a single dose of synthetic human secretin in the treatment of autism and pervasive developmental disorder. New England Journal of Medicine, 341, 1801-1806.Smith, T. (1996). Are other treatments effective? In C. Maurice (Ed.), G. Green, & S. C.Luce (Co-Eds.), Behavioral intervention for young children with autism. Austin, TX: PRO-ED.
References for practical information on Applied Behavior Analysis and Positive Behavior SupportBambara, L. M., Dunlap, G., & Schwartz, I. S. (Eds.). (2004). Positive behavior support: Critical articles on improving practices for individuals with severe disabilities. Austin, TX: PRO-ED.
Buchanan, S. M., & Weiss, M. J. (2004). Applied behavior analysis and autism: An introduction. Ewing, NJ: COSAC.
Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied behavior analysis. Upper Saddle River, NJ: Prentice-Hall.Harris, S. L., & Weiss, M. J. (1998). Right from the start: Behavioral intervention for young children with autism. Bethesda, MD: Woodbine House.Koegel, L. K., Koegel, R. L., & Dunlap, G. (Eds.). (1996). Positive behavioral support: Including people with difficult behavior in the community. Baltimore, MD: Paul Brookes Publishing Company.
Lucyshyn, J. M., Dunlap, G., Albin, R. W. (2002). Families and positive behavior support: Addressing problem behavior in family contexts. Baltimore, MD: Brookes Publishing.
Maurice, C., Green, G., & Luce, S. C. (Eds.). (1996). Behavioral intervention for young children with autism: A manual for parents and professionals. Austin, TX: PRO-ED.Maurice, C., Green, G., & Foxx, R. M. (Eds.). (2001). Making a difference: Behavioralintervention for autism. Austin, TX: PRO-ED.
Sundberg, M. L., & Partington, J. W. (1998). Teaching language to children with autism or other developmental disabilities. Pleasant Hill, CA: Behavior Analysts, Inc.References for research on Applied Behavior Analysis and Positive Behavior Support
Carr, E. G., Horner, R. H., et al. (1999). Positive behavior support for people with developmental disabilities: A research synthesis. Washington, DC: American Association on Mental Retardation.Eikeseth, S., Smith, T., Jahr, E., & Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year-old children with autism: A 1-year comparison controlled study. Behavior Modification, 26, 49-68.Lovaas, O. I. (1987).~ Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.Matson, J. L., Benavidez, D. A., Compton, L. S., Paclawskyj, T., & Baglio, C. (1996).~ Behavioral treatment of autistic persons: A review of research from 1980 to the present.~ Research in Developmental Disabilities, 17, 433-456.McClannahan, L. E., MacDuff, G. S., & Krantz, P. (2002). Behavior analysis and intervention for adults with autism. Behavior Modification, 26, 9-26.New York State Department of Health. (1999). Clinical practice guidelines: The guideline technical report – Autism/pervasive developmental disorders, assessment and intervention. Albany, NY: Early Intervention Program, New York State Department of Health.