It is currently estimated that approximately one in 166 children have an autism spectrum disorder (ASD). Public schools throughout the country are faced with an increasing number of classified children who present with an ASD diagnosis and there is much debate as to whether our educational system can appropriately meet the educational needs of children with this multifaceted disability. Thus, to conclude that we are facing a crisis of epidemic proportion at state and national levels is no exaggeration.
Over the last decade, professional endeavors have provided me with opportunities to learn much about the struggles experienced by parents as they face the multitude of “interventions” currently available. Michael Shermer, publisher of Skeptic magazine and author of the book Why People Believe Weird Things, contributed an article which appeared in the spring 2003 quarterly newsletter of the Association for Science in Autism Treatment (ASAT). Shermer contends that belief in the “paranormal” continues to exist in the general population and is not an uncommon phenomenon among even the college-educated.
“Science is not a database of unconnected factoids but a set of methods designed to describe and interpret phenomena,” Shermer maintains. “Past or present, [science] is aimed at building a testable body of knowledge open to rejection or confirmation.”
Service providers have an obligation to provide effective evidence-based treatment services to individuals with autism. Although there continues to be a wide array of interventions for persons with autism, applied behavior analysis (ABA) is distinguished from other interventions because it has been proven effective in promoting skill development in persons with autism. Research has demonstrated that ABA promotes meaningful and lasting behavior change in persons with autism (Green 1996). Despite this fact, behavior analytic intervention programs in New Jersey, for example, both public and private, are limited in number.
The importance of early intensive behavior analytic educational services for children with autism cannot be overemphasized. Howard, Sparkman, Cohen, Green and Stanislaw (2005) compared three different intervention approaches (intensive behavior analytic intervention, eclectic intervention, and non-intensive early intervention) for preschoolers diagnosed with ASD and found that children in the intensive behavior analytic treatment (IBT) group achieved statistically significant higher mean standard scores in all assessed domains (with the exception of motor skills). Additionally, children in the IBT group demonstrated higher learning rates at follow-up than children in the two comparison groups.
It was determined that, during a treatment period of 14 months, the rate of skill acquisition in most domains for children who received intensive behavior analytic treatment “matched or exceeded the normal rate of one year of development per year of age.” In contrast, the investigators found that learning rates in children in the comparison groups fell far below the normal range. The researchers emphasize the importance of early intensive behavior analytic intervention for children with autism in order to narrow the gap that often exists between the skill sets of these children with those of their typically developing peers. If students with autism are to benefit from inclusion, they must be equipped, with or without support, to manage the academic and social demands of the regular education setting.
Effective networking is perhaps the most important skill a parent can acquire in accessing appropriate educational services. Developing this multifaceted skill is especially critical given the limited available resources as well as the complexities involved in interfacing with agencies, school districts, and medical professionals once the need for special education services has been identified. Determining whether a program can provide intensive, systematic, data-driven and, ultimately, meaningful intervention services for a child with autism requires a great deal of time, effort, and coordinated multi-disciplinary manpower. In many instances, parents can and do benefit greatly from the support of other parents, medical professionals, advocates, special education counsel, and experts in the field of autism who can assist in determining the extent to which a particular educational program can appropriately meet the unique educational needs of a given child.
The following steps should be considered when seeking to obtain evidence-based intervention services for children with this pervasive developmental disability.
1. Review the various intervention options available. It is recommended that parents take a very active role in researching treatment options and evaluating the extent to which a particular intervention has the backing of scientific research. The Maine Administrators of Services for Children with Disabilities’ (MADSEC) Autism Task Force emphasizes the importance of peer-reviewed studies in evaluating the efficacy of interventions. MADSEC concludes that applied behavior analysis “has been objectively substantiated as effective based upon the scope and quality of science.”
2. Evaluate and determine the availability of services in your community. The Behavior Analyst Certification Board (BACB) provides a Certificant Registry, listing those individuals in New Jersey (and throughout the nation) who are certified in behavior analysis at either the associate or senior-level. The board certified associate behavior analyst (BCABA) and board certified behavior analyst (BCBA) are the two certifications that the board issues for professionals who have met the minimum standards (“knowledge, skills, and abilities”) deemed required for providing behavior analytic services to schools, agencies and other organizations.
3. Inform early, ask questions, and seek specific answers. When a child is diagnosed with autism, parents begin the arduous task of confronting various systems at both the county and local level. Prior to the age of three, children diagnosed with autism can receive county-based early intervention services if it is determined that a child exhibits marked delays across developmental domains. It is recommended that parents not wait until a child is three before contacting their local school district. Referral to the school district is recommended a few months prior to the child’s third birthday.
4. Take the time to observe and evaluate placement options. Parents should spend time observing public and/or private schools that provide educational services to children with autism. It is advisable to observe more than one placement option thoroughly. A thorough analysis of program components is essential to ensure that the program can meet the individual educational needs of a given child.
5. Work collaboratively with your child study team. A child’s educational needs are best served when all team participants (i.e., parents, child study team members, related services personnel, and other professionals) work together to make informed decisions regarding the educational needs of a given child and the program(s) that can provide effective intervention services.
6. Keep accurate and complete records. Parents should keep an educational file that contains all evaluations completed on their child, which should include but not be limited to private evaluations, early intervention evaluations, child study team assessments, written correspondence between professionals and medical information. When observing program options, parents should make every effort to take detailed notes.
7. Persist in your efforts. Although it is often a daunting task to secure appropriate educational services for a child with autism, the extent to which the parent becomes an informed advocate can be the most critical factor in the process. Parents who have sought and been successful in securing appropriate educational services for their children are those who seek information, and become and remain active participants in their child’s education.
Determining the appropriateness of an educational program for a given child requires time, expertise and (often) financial expense. A multidisciplinary team approach to program planning for children with autism is suggested to maximize the extent to which informed programming and placement decisions can be made. Most importantly, careful evaluation of all program options and program components should be conducted. Amidst all other considerations systematic decision-making should be the overriding goal.
Behavior Analyst Certification Board (1998-2005). See www.bacb.com.
Green, G. (1996) Early behavioral intervention for autism: What does research tell us? In Maurice, C. (Ed.). Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals. Austin, Texas: Pro-Ed.
Howard, J.S., Sparkman, C.R., Cohen, H.G., Green, G. and Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359-383.
Maine Administrators of Services for Children with Disabilities (MADSEC). February 2000; Revised Edition. Report of the MADSEC Autism Task Force.
Shermer, M. (2003) Why People Believe Weird Things. Association for Science in Autism Treatment. http://asatonline.org/pdf/Spring2003.pdf
Anita Breslin, Psy.D., BCBA is a New Jersey licensed psychologist and Board Certified Behavior Analyst. She earned her doctorate in psychology from Rutgers, the State University of New Jersey Graduate School of Applied and Professional Psychology (GSAPP) in 1990 and has served as an advocate and independent expert for children and adolescents with developmental disabilities. Her primary focus over the last ten years has been in the assessment of educational programs for students with autism. She currently resides in New Jersey with her husband and two children.