There is hope in facing the challenges of autism

By ROGER FRANK BASS

Posted: Jan. 1, 2008 Autism's causes are unknown, but its debilitating behavioral effects are obvious.

Autistic children are aloof and unresponsive in social situations. Verbal skills are poorly developed and often characterized by echolalia (repeating words said by others) and perseverating on stock phrases made out of context.

Stereotypic behaviors often occur in a favored modality such as hand-flapping (tactile stimulation), rocking (kinesthetic stimulation), moving objects in front of their faces (visual stimulation), making loud noises (auditory stimulation), etc. Autistic children often love routines and resist even small changes in them.

The facts

Twenty years ago, psychologists and educators had virtually no effective, well-researched techniques for addressing those challenging behaviors. Most parents resigned themselves to believing that their children would require extensive care, often in institutions, and would never join the larger society.

That bleak picture has changed radically, thanks to the contributions of researchers such as O.I. Lovaas, Gina Green and Mark Sundberg. Their work has generated what is generally recognized as the best tactics for mitigating and sometimes even eliminating the effects of autism.

Catherine Maurice, a parent, tells that story in "Let Me hear Your Voice," a book in which she describes her successful fight against emotional and institutional challenges that stood between her child and effective treatment.

Those effective treatments were largely the products of a field called behavior analysis and include such methods as discrete trial training, applied behavior analysis and the verbal behavior approach. For an introduction to those procedures, go to the "Autism" segment of the Cambridge Center for Behavioral Studies' Web site (www.behavior.org) and check out Sundberg's forthcoming book, "A Behavioral Approach to Language Assessment and Intervention for Children with Autism." Parents and teachers can take heart. There are reasons to be optimistic.

The fads

One of the most frustrating challenges faced by parents of autistic children is separating effective treatments from the sales and hype surrounding fads. Desperate parents seeking someone they can trust become easy targets when they need to stay calm and steep themselves in well-researched methods like those cited above.

Here's how to identify effective methods:

• The research clearly describes the procedures used, and they emerge superior in head-to-head comparisons with other methods.
• More than just a small group of researchers at one or a few schools or clinics finds the procedure effective.
• The procedure produces large changes. "Statistical significance" can be obtained with minuscule improvement. Parents need substantial, consistent progress.
• Follow-up data prove the procedure's effects are maintained.

Although many of the most-used procedures don't meet these minimal criteria, those mentioned above (discrete trial training, applied behavior analysis and the verbal behavior approach) pass muster. Notable failures include most special education classes, facilitated communication, myriad medications (often with side effects), mega-vitamin therapies and talk therapy, most notably psychoanalysis.

The number of fads and their intense marketing require parents to become their child's most informed advocate, a complex, time-consuming task added to the financial and emotional burdens they already face.

The funding

Autism is a disability like cerebral palsy, muscular dystrophy and Down syndrome, yet insurance almost never covers the treatment. Early childhood teachers very seldom have the training necessary to deliver effective methods, and even if they did, most classroom settings don't support such pedagogy.

The most effective use of the most effective treatments requires intensive instruction - 30 or more hours per week - beginning immediately after autism clearly presents itself (usually about age 1). Without state or private coverage, parents either must pick up the tab (often about $100 an hour) or watch the sun set on their child's best chances for a more normal life.

Roger Frank Bass of Port Washington is a professor of education at Carthage College. His e-mail address is rfb53074@aol.com