9 months ago



Sally, Ann, and Danny

Sally, Ann, and Danny 117 ever, he seemed to be a different child. He became lethargic, withdrawn, and reclusive, and over the next few months he stopped using his words altogether. He no longer smiled or brought objects to show his parents. He was cranky and irritable. Soon he started to show a fascination with bits of paper, ripping them up into little pieces, rolling them into little balls, and throwing them down the stairs. He would also spend hours flipping through the pages of his father’s law books. His parents were of course devastated by this turn of events. They had in effect lost their son; to them it felt as if he had died that night of the convulsion. Robert’s mother was deeply distressed, and his father tried to be supportive, but he too felt a deep loss. They started seeing doctors in their local area but became angry, frustrated, and disappointed with the answers and opinions they received. Eventually, Robert was given a diagnosis of autism by a specialist. But this did not end his parents’ search; they now began an intensive and exhaustive search for a cause. They were convinced that something must have caused this regression in his social and communication skills—perhaps the vaccination. But they could not get the doctors to agree with them. It’s true that regression like this can occur in about thirty percent of children with autism, usually in the eighteen- to twenty-four-month range. In the vast majority of cases, though, no discernible cause can be identified, and this can cause the parents a great deal of frustration. (This is not the same as disintegrative disorder, another ASD subtype, where the period of normal development is much longer than twenty-four months.) For this new appointment with me, Ron and Carol have sent along a rather large stack of medical documents that chronicles the story of these investigations and consultations carried out around the country. Robert had several magnetic resonance imaging (MRI) and computerized tomography (CT) scans done and many other investigations, but nothing specific showed up. Similarly, all the blood tests gave results in the normal range. In the meantime, he became very fussy about food and would eat only chicken nuggets and drink apple juice. He soon developed frequent diarrhea. As a result of this new set of problems, he had several gastrointestinal investigations, including X rays of his digestive system and biopsies of his intestines. These produced some nonspecific findings suggestive of colitis. Ron and Carol had read on the Internet recently that vaccinations for measles, mumps, and rubella (MMR) can cause colitis and that this may alter the permeability of the digestive system, allowing toxins into the bloodstream. According to

118 A MIND APART this Website, these toxins affect the brain and can cause autism. Now Robert was on a gluten- and casein-free diet, which his mother found very difficult to implement and Robert refused to eat. As a result, dinner time was always difficult and a frequent setting for conflict. Ron and Carol’s journey around the country with Robert amounted to one long and arduous search for an answer. This vaccination–colitis– autism connection was the latest hypothesis they were pursuing. Ron and Carol felt strongly that pinpointing a cause would lead to more effective treatments. It would provide concrete evidence of pathology that would suggest a treatment intervention like a change in diet or other approaches such as the hormone secretin, allergy pills, and yeast infection pills—all interventions that have at one time been promoted as a “cure” for autism but that have little documentation of effectiveness. What was sad to see in the notes was that over the years there was little discussion of realistic, evidence-based treatment options for the autism that would improve Robert’s functioning but that make no claims about “cure.” There had been no behavioral interventions to improve his social skills, few attempts to teach him augmentative forms of communication, and little in the way of sustained opportunities for inclusion in regular school. Ron and Carol argued that since the autism came on suddenly in a child previously well, it must have been caused by something that, when removed, might cure the autism and give them back their son. This pursuit, though, prevented their taking up opportunities to lessen the degree of disability through the standard evidence-based interventions available. It was a difficult interview. Robert sat patiently in his chair, showing little interest in the toys that were available, rocking back and forth, sitting on his hands. He did want to read some of the books on my shelves, which I was happy to share with him. But I made sure I gave him some old books that he could rip apart at will. He was still having difficulty communicating and only occasionally used single words to ask for food or books, but he was able to sing songs from children’s shows. He spent all his time at home, was not involved in community activities like swimming lessons or other recreational activities. He ran around the house for hours on end when not watching TV. Not much had changed in the years since I had seen him last. The parents sat on either side of him and were grim faced, almost like battle-scarred victims of the health system. There was no cheerful greeting, no catching up on what had happened over the interim, no discussion about what was new in the field of autism.

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