Autism, treatment approaches and young children - what do we need to know?

by Martie Kendrick, M.Ed. & Bonnie Blagojevic, M.Ed.

Sam continuously wanders around his early childhood classroom. After awhile he sits down and begins to stare into space as he rocks gently back and forth. As the noise level rises in the classroom, he grabs his ears and shrieks. His teacher tries to comfort him, but he continues to scream. After 20 minutes, supported by his teacher, Sam calms down. The team attempts to engage him in play, offering him several Matchbox cars, his favorite toys.

Sam’s experience is representative of a growing number of young children in Maine. The number of Maine children, ages 3-20, diagnosed with autism has more than tripled from 304 in 1997 to 1,018 in 2003 (Maine Department of Education, 2004). As these numbers have increased, so has the interest and need to learn more about autism and autism spectrum disorders (ASD), a term used increasingly that includes autism and a range of closely related disabilities (Dunlap and Bunton-Pierce, 1999).

Families of young children diagnosed with ASD are faced with the challenge of arranging early intervention services: screenings, evaluations, and diagnoses. Parents may feel bewildered as they seek the treatment approach that best matches their child. Early childhood educators may feel confused and conflicted as well, when widely varying early intervention approaches are suggested for children diagnosed with ASD participating in their programs.

There is good reason to feel confused. In Maine and across the country there is a great deal of conflicting information about ASD and considerable controversy regarding the most effective forms of treatment for young children receiving the ASD or autism diagnosis. This confusion may result from several factors. Autism is a complex disorder with symptoms affecting a variety of physiological functions. There are numerous theories as to its cause, ranging from the deleterious “refrigerator mom” to neurological causes, from metabolic, genetic, or dietary reasons to vaccines. Until recently, autism was considered a rare disorder that physicians encountered infrequently. As a result, until recently, it received limited attention from researchers, impacting the quality and quantity of research done.

Diagnostic criteria and labels have changed over time, perplexing both parents and professionals. Each of the four revisions of the Diagnostic and Statistician’s Manual (DSM) reflects medical understanding (and limitations of understanding) of autism at the time of publication. Additionally, professional jargon related to the pervasive developmental disorder classifications—while facilitating communication within the medical and psychiatric communities—has contributed to confusion and miscommunication across fields and with the general public (Janzen, 2003; Feinberg & Vacca, 2000).

In a climate where it can be difficult to tell fact from fiction, it becomes especially important for parents and early childhood educators to learn more about autism, various treatment approaches, and to keep current with new developments and research.

Treatment for autism falls within a variety of modalities. These may be categorized into broad approaches including: structured educational and early intervention; language-based; occupational therapy; dietary; medical/pharmaceutical; sensory-foci, such as visual, hearing, and touching treatments; behavioral; chiropractic, and others. Some treatments, such as holding therapy and facilitated communication, are highly controversial and few have been subjected to rigorous scientific study (Simpson, 1999). Additionally, as Feinberg & Vacca (2000) point out, “Autism is viewed as a metaphor for the dilemma that policy makers encounter when they attempt to fashion policies for children with special needs at a time when there is insufficient data to determine which services should be made available…” (p. 130).

For parents and professionals confused about how to evaluate the treatment options available, the National Academy of Sciences (NAS) has created a committee to identify educational practices that have scientific evidence of effectiveness (National Research Council, 2001). The committee identifies nine components common to all effective models:

1. Intervening as early as possible,
2. Providing an intense intervention,
3. Actively involving families,
4. Training staff,
5. Assessing children’s progress,
6. Using a systematic and clearly planned curriculum,
7. Establishing a highly supportive environment,
8. Providing individualized intervention, and
9. Supporting transition to kindergarten

(National Research Council, as cited in Odom, Brown, Frey, Karasu, Smith-Canter, & Strain, 2003).

While there continues to be considerable controversy about the causes of and treatment for autism, the field as a whole is continuing to emerge. There are new efforts to synthesize and develop best practice as new research is completed and the implications for implementation are understood. In searching for treatments that will lead to positive outcomes, both parents and professionals must sort through the volumes of research, claims, and counter claims. It is in the interests of both therefore, to work together to “translate” research into approaches that can support the growth of each and every child.

Autism Resource website links:

Ability Maine: Autism Guide: http://www.abilitymaine.org/resource/guides/autism.html  

Autism National Committee: Autcom: http://www.autcom.org/

Autism Society of Maine: Autism link: http://www.asmonline.org/resources.asp

The Center for Community Inclusion and Disability Studies: http://www.umaine.edu/autism/

The Center for Disease Control, National Center on Birth Defects and Developmental Disabilities: http://www.cdc.gov/ncbddd/autism/actearly/

Autism Society of America: http://www.autism-society.org/site/PageServer

References:

Dempsey, I., & Foreman, P. (2001). A Review of Educational Approaches for Individuals with Autism. International Journal of Disability, Development and Education, 48(1), 103-116.

Dunlap, G. & Bunton-Pierce, M. (1999). Autism and Autism Spectrum Disorder (ASD). Retrieved December 14, 2004 from the Council for Exceptional Children Information Center on Disabilities and Gifted Education http://ericec.org/digests/e583.html

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(3), 130-138.

Janzen, J.E. (2003). Understanding the Nature of Autism: A Guide to the Autism Spectrum Disorders (2nd ed.). San Antonio, TX: Therapy Skill Builders.

Maine Department of Education (2004). December 1 Child Count/Percent to Total by Disability, 1997-2003. Retrieved December 14, 2004 from http://www.maine.gov/education/speceddata/Percentchart.htm

The National Academies: Advisers to the Nation on Science, Engineering, and Medicine (n.d.). Retrieved 3/26/05, from http://www4.nationalacademies.org/news.nsf/isbn/0309075777?OpenDocument.

Odom, S.L., Brown, W.H., Frey, T., Karasu, N., Smith-Canter, L.L., & Strain, P.S. (2003). Evidenced-Based Practices for Young Children with Autism: Contributions for Single-Subject Design Research. Focus on Autism and Other Developmental Disabilities, 18(3),166-175.

Simpson, R.L. (1999). Early intervention with children with autism: The search for best practices. Journal of the Association for Persons with Severe Handicaps, 24(3), 218-221.