Autism and Asperger Articles, Bill Stillman, Award-Winning Author

Autism and the 90 Percent Factor: Building Authentic Relationships

by William Stillman

It seems everyone everywhere not only has a theory about what causes autism, they’ve got a therapy, behavior modification, remedy or some other deprogramming technique borne of an urgent demand for normalcy that is all too readily fulfilled by the multi-million dollar autism industry. But what if everyone caught up in battling and defeating autism called a truce? What if autism became the new norm?

If you think it preposterous, consider that, in the United States alone, autism affects one in every 150 children and one in 94 boys. But autism is not an American phenomenon, and statistics in other countries are actually narrower. It has been projected that, at the rate we’re going, by the year 2035 most of our world’s population will be autistic.

For years, I have conjectured that autism might be an indication of a new evolutionary process and, for nearly as long, I have pleaded for compassionate accommodations in how we interpret the autistic experience. The proper response to autism, I hold, is to perceive our interactions as we would with someone recovering from stroke or compromised by cerebral palsy—the physical is rendered immobile and unreliable but one’s intellectual capacity is fully intact. To presume intellect is to relate to the individual with autism, as you would anyone else with whom you had a relationship, at that person’s chronological age level.

Of course not everyone subscribes to my beliefs, and countless thousands of children, teens, and adults with autism are declared to be functioning at a diminished intellectual capacity incongruent with their actual age. Instead of feeding their hungry brains, these persons are usually only ever provided substandard curriculum and repetitive tasks. This perspective permits us to adopt an attitude of superiority that denies our most sensitive citizens of their human rights through extreme forms of behavior modification in the name of “normalcy.”

Despite this dichotomy I have always elected to take the high road by presuming intellect—and it works. I must tell you that, as an autism consultant, 90 percent of what I do has absolutely nothing to do with the individual with autism. My work, however, has everything to do with endeavoring to effect a transformation among everyone around that individual to achieve a new understanding. They are the 90 percent I need to reach.

When we believe that we are truly superior to others that appear severely impaired, we often completely misunderstand and misinterpret their attempts to communicate in terms of “behavior.” We also take the liberty of speaking about those very individuals in front of them—humiliating and embarrassing them—as if they were void, vacant and unaware. Nothing could be further from the truth.

Recently I was dialoguing with a team supporting a very young girl with autism who had some language but whose vocal capacity was limited. Their greatest concern, though, was that she was banging her head over a hundred times a day. They showed me a video clip in which she was being drilled with flash cards for identifying sunny or cloudy weather; but in peering closely at her, and believing she had good reasons for her conduct, I intuitively recognized there was something more afoot. I first advised the team to determine her passionate topics of interest from which to build a meaningful curriculum; the flash cards had no relevance to her, she was responding by rote, and compliance for the sake of obedience does not equal success.

Perhaps it is only because I am, myself, on the autism spectrum that I noted her slightly unkempt clothes, her disheveled hair, and the sense that she was grappling with something more profound than identifying sun or clouds. In fact, I suspected she was being abused and this was confirmed by her educators though they had no solid proof. After our debriefing, though, they reported their suspicions to Child Protective Services. Not only that, they gently informed the girl that they understood her struggle and that they desired to keep her safe and protected. Guess what happened to the severe behavior of autistic head-banging? It all but vanished. Yet under common circumstances, this child would’ve otherwise been overmedicated and forced to wear a protective helmet—band-aids to contain symptoms of a larger issue.

Just this week, I counseled caregivers from an agency (that serves adults with autism in community group homes) about presuming intellect and building safe and trusting relationships. In particular, one caregiver clearly saw the 90 percent factor: she and others had the habit of talking about an autistic man who is mute in front of him, often openly updating one another about the frequency of his bowel movements and urination. Recognizing her egregious disservice, the caregiver made an apologetic confession of her ignorance to the man. She tearfully recounted that, although he had never previously made eye contact, he now gazed upon her deeply and intently, rested his head on her shoulder, and caressed her face lovingly. She had been forgiven.

I could go on sharing dozens more inspiring anecdotes that manifest as a result of adopting this revolutionary paradigm. Many individuals with autism may always require hands-on assistance due to physical limitations but, like the stroke victim, they possess an intact cerebral competence. In comprehending the requirement for a new approach to appreciating individuals with autism, the 90 percent factor—understanding it is we who must change our behavior—foretells of the unlimited possibilities that await us for building authentic relationships.

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©2009, William Stillman (www.williamstillman.com)