Saving Ben: A Father's Story of Autism

Sunset

50 Sunset But even as Ben rallied, the stress on the family was taking a toll. July of 1991, Sue and I entered family counseling, trying to save our twenty-four-year marriage. As summer blended into fall, our relationship continued to unravel. July 23, 1991. Sue and I met with Russ Dunckley, Ph.D., a family therapist, to discuss some issues in our relationship. Sue and I had struggled repeatedly with my sexual orientation, beginning before we were married. She knew I was gay—my affair with Joel was no secret— but marriage was supposed to keep me on the straight and narrow. An unlikely expectation, from a twenty-first century perspective, but one that we held on to in spite of all evidence to the contrary. By late summer of 1991, I was losing control. Beneath the fortress of our marriage, tectonic plates were shifting. I dreamed about a small city in Iowa, like Iowa City, where Sue and I had lived during our first three years together. In my dream, a building collapsed, burying hundreds. Then the top half of a glass-and-steel tower imploded. Workers down by the river were drilling a deep hole for a pier, and the limestone substrata carried the force from the drilling in to the city. In the dream, I watched slow-motion films of one building falling. On Sunset ❧ 51 the top floor, the walls cracked open, and I could see the people being pummeled by debris as the walls and floor gave way. In real life, Dr. Dunckley was drilling into the substrata of our marriage. On August 2, 1991, he talked to Sue about her having come from an abusive background, and when he asked if she had been sexually abused she become very angry. She was unable to recall sexual abuse, but the question was very upsetting for her. August 18, 1991. “Hold up four fingers, Ben. That’s right, you’re four years old!” On Ben’s birthday he was coming down with a cold. August 19, 1991. On his day-after-birthday, Ben received his fouryear immunizations. He was sick. The doctor noted that Ben had “no eye contact,” was “known to have autism,” and was “screaming all the time.” Nevertheless, Ben received three vaccines: for oral polio; diphtheria, tetanus, and pertussis; and measles, mumps, and rubella. One month later, at the request of the school, Ben received his Haemophilus b conjugate vaccine. August 25, 1991. Ben began the regular fall semester of his Early Childhood Intervention program at McCoy. “He reentered the Early Learning Program,” I wrote in a letter to a friend, “and met all of his first year developmental goals immediately. His teachers are astounded . So are we.” August 30, 1991. Our marriage counseling continued. Sue recalled some sexual involvement with her father as a child and said she was angry with all men. I supposed that included me. September 6, 1991. Which therapy was helping Ben? I said vitamins ; Sue said light. Careful to keep our disagreement from spilling over to Ben, I wrote to Dr. Rimland for advice. He suggested that we try one therapy at a time and observe the results. We took Ben off B6 and DMG. “By the third week in September,” I wrote in my diary, 52 ❧ saving ben: a father's story of autism “Ben was 100% un-potty trained and was using no language except ‘eee-Up!’ He was masturbating like mad.” All systems were failing: potty training, language, attention span. Could removing vitamin B6 and DMG have caused Ben’s regression ? That seemed like an obvious conclusion to me, but Sue was heavily invested in the phototherapy. She took pride of ownership in her web Medline discoveries because she put two and two together and had come up with a novel treatment. Through our online network we were sharing our observations with the parents of other autistic children and with several doctors, including Dr. Rimland. It was exciting to think that we might be medical pioneers on the forefront of discovery. So Sue and I ramped up the phototherapy , substituting artificial sunlight for the waning autumn sun. Sue worked with Kristi to set up phototherapy for Ben at school. I bought a light meter. We kept data. November 5, 1991. I wrote, “Attempts to replicate last summer’s light therapy results have not been successful …We charted Ben’s behavior...