William Stillman is a nationally recognized autism self-advocate, speaker, and author of numerous special needs parenting books including Demystifying the Autistic Experience, The Everything Parent's Guide to Children with Asperger's Syndrome, Autism and the God Connection, and The Soul of Autism. Stillman has advocated for persons with different ways of being since 1987, and he serves on several advisory boards including Autism National Committee. He also writes columns for The Autism Perspective and Children of the New Earth magazines. In his work, Stillman seeks to passionately transform perceptions of autism from those defined as "afflicted sufferers" to those with valuable gifts to offer the world. His Web site is www.williamstillman.com.

In response to the Autism Society of America and National Health Council’s recent Town Hall Meeting on health reform, both presidential candidates, Senators McCain and Obama, stated their respective positions on autism and how our government should respond. Both acknowledge the seriousness of addressing a “national crisis,” defined by McCain, ranging from funding for research, early detection, treatment, educational supports, and long-term, viable employment for the thousands of soon-to-be adults with autism. Senator Obama also advocates implementing $1 billion annually for autism research and treatment though what that entails and how it would differ from what presently occurs is uncertain (Obama improperly melds autism with other disabilities). McCain rightly suggests “there is no single [treatment] approach” and recommends a “range of activities to improve the…needs of individuals with autism.” (The question of which candidate articulates the optimal position could be re-asked in terms of which candidate has the better informed staffers/ghost-writers most knowledgeable for the issues.)

Regardless of which candidate holds greater autism awareness, both call for increased funding (including Obama’s insurance reform measures). In Pennsylvania, a newly-passed bill has been heralded as a triumph for compelling health insurance companies to fund up to $36,000 per year in specified services for families of children with autism under age twenty-one. More pointedly, and as directed by the bill, insurance will now be required to cover Applied Behavior Analysis, promoted as most efficacious among treatment options. ABA is defined in the bill as “the design, implementation and evaluation of environmental modifications, using behavioral stimuli and consequences, to produce significant improvement in human behavior or to prevent the loss of attained skill or function...” Call me a killjoy, but instead of a victory I see the bill as a defeat. It is, in essence, not only an endorsement of one therapy to the exclusion of others (covered by insurers, that is), it green lights the additional, exhaustive expenditure of funds that no parent is going to decline if it’s there for the taking. But there is a greater issue at heart.

ABA requires that professionals—degreed, specially trained and certified in ABA therapy techniques—engage autistic children in intensive treatment activities. Oftentimes, these activities are in the guise of play and usually take form as “drills” in which the ABA professional repetitively conditions the child to comply with various modes of conduct, activities, and desired responses. In one example, the ABA professional, seated across from the child, holds up a flash card of a cow and prompts the child to identify “cow” until he does so correctly and often enough to be considered to have mastered the skill. Negative responses, tripped by “behavioral triggers,” are identified and modified in the environment or discouraged in favor of positive reinforcement. The positive response of the successful child may be rewarded with verbal praise, a food item, favored activity, or toy.

Sounds great, right? The only problem is that’s not how most autistics think, learn, process and retain information, let alone possess the capability to transfer what’s learned in ways that are functional and appropriate. And if it sounds similar to Pavlov’s dogs you’re not far off base, though what thrills parents is behavioral compliance—their child has been conditioned to suppress his autistic traits long enough to be less of a “behavior problem” and outwardly present as “normal.” But compliance for the sake of obedience does not equal success. It means someone has been conditioned to reply by rote. Further, we’ve portrayed autism as so complex and complicated, we’ve disempowered parents from parenting. We’ve supplanted their ability to develop a relationship with their own children by dictating that a professional, previously a stranger to the child, is solely qualified (and required to be so) to interact with their child for hours on end. This creates system dependency instead of imparting skills, techniques and strategies to parents that empower them to parent effectively, capably, and competently.

If you want me to learn “cow,” help me learn it naturally in the context of a mutually respectful, reciprocal relationship that makes it interesting, pleasurable, and intellectually stimulating to learn. If you want me to learn “cow,” show me a cow. Take me to an open pasture and introduce me to cow; or at the least, let’s learn about cow together, parent to child, by reading age-appropriate material, watching video of cows, and creating recipes using the food produced by cows. This is the type of quality interaction that those of us on the autism spectrum record for safekeeping and replay years later as pleasing recollections. By contrast, there are precious few, if any, adult self-advocates who joyfully espouse the childhood rigors of systematic programming.

As Senator McCain advises, there are myriad options for supporting persons on the autism spectrum to integrate with their bodies, and to tame and refine their reactions to the environment; some are respectful, some are not, and some are simply abuse disguised as treatment. To parents, use as a measuring tool the following queries: Does the treatment presume that my child is intelligent; does it help me further my understanding of parenting my child without system dependency; and is my child happy, interested and making progress? And to our presidential candidates, a caution—be careful of what you wish for when planning for the future of our nation’s autistic citizens, and above all be clear to distinguish the “cow” from the manure.

© 2008, William Stillman

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Update on Aug 5, 2008 by At Basil & Spice

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