Leominster, a New England factory town 45 miles NW of Boston had many plastics manufacturers like Foster Grant, the maker of sunglasses. Soon Leominster became the Polluted City with a green haze in the air and the waters of the Nashua River flowed red, white, and blue. PVC particles frosted vegetables. Finally, the plant was outsourced to Mexico and the defunct plant was declared a hazardous waste site. Small clusters of autism started to show up. A similar chain of events had occurred 40 miles up the highway in a working-class town called Woburn when clusters of acute lymphocytic leukemia occurred. Headaches, blurred vision, rashes, and miscarriages were common. Carcinogenic and neurotoxic chemicals had been buried near two of East Woburn’s wells. Dozens of autistic children were found when maps were made of autistic children. The link to the Foster Grant plant seemed undeniable. Citizens went national in a 20/20 episode. 42 cases of autism were found in a small neighbourhood of 600 homes. Firm evidence of the role of toxicity in autism was elusive but mothers were convinced. Parents from all over the country contacted the TV network. The actual number of confirmed cases of autism in town was lower than advertised and parents’ proximity to the Foster Grant plant was tenuous at best. The real story was more complicated than portrayed.
The connection between autism and genius implies that children with the syndrome inherit a double dose of the extreme ability to concentrate – to narrow their attention to a very fine point, like a searchlight, to illuminate with great intensity a very small matter.
The fact that some children who displayed all the classic signs of early autism manage to grow up to become happy and well-adjusted adults without the benefit of elaborate elimination diets and gray-market drugs like secretin (a digestive hormone heavily promoted by Rimland that showed no evidence of benefit in placebo-controlled studies) had been forgotten. So had Kanner’s observation that one of the most crucial factors in determining the outcome of his patients was a sympathetic and tolerant reception by their teachers.
Rimland did not focus on the changes in diagnostic criteria (DSM-III, III-R, and DSM IV) to explain the rapid rise in the incidence of AS, but instead blamed pollution, antibiotics, and vaccines with the Leominster “cluster” as a dramatic example. He pushed the idea that there was an Autism Epidemic, not merely an increase in awareness.
This took hold permanently in the autism parent’s community becoming part of the growing lore of the epidemic. His position as the most trusted authority in the autism parents’ community gave him enormous influence.
He became frustrated as the centre of autism research tilted away from him toward Wing and the London group. Vaccines became his main area of focus. The original DPT (diphtheria, pertussis, tetanus) was based on killed whole bacterial cells, had many adverse effects, quality control issues, unreliable potency, and batches with higher than usual side effects. It was finally replaced in 1971 by an acellular form. Books like DPT: A Shot in the Dark by Harris Coulter and Barbara Fisher and an NBC special: DPT: Vaccine Roulette played down the risks of natural infection and highlighted the risks of the vaccine. They detailed brain-damaged children and depicted pediatric medicine as a horror show of heedless doctors, craven vaccine manufacturers, and sleazy government officials – a scathing critique of the whole apparatus of mainstream medicine. Levels of fear were as bad as the polio scare of the 1950s. The National Vaccine Information Centre (NVIC) became the organizational power of the movement. Coulter, with no credentials, became an advocate of homeopathy and the notion that children with learning disabilities were vaccine-injured, instead of dyslexic or autistic. Rimland came to believe that Coulter had found the elusive puzzle of the rising autism rates. His endorsement gave Coulter’s fringe theories about autism, encephalitis, and vaccines a reach they would never have had.
Andrew Wakefield. At the same time, a young gastroenterologist in England named Andrew Wakefield claimed that the combination measles-mumps-rubella (MMR) vaccine causes brain injury. In 1998, he published his theories in the Lancet, one of Britain’s most prestigious medical journals. Fever, rashes, convulsions, and other transitory reactions to vaccines terrified parents. The very rare reactions that are serious are trade-offs of the socially acceptable risks (most lifesaving drugs or surgery/anesthesia could have potentially fatal results). Homeopathy, while it may never cure, it also never kills directly. A formidably built man with deep-set blue eyes and a crisp, no-nonsense manner, Wakefield carried himself like a man who was above the fray. He used every ounce of this gravitas to cast a pall of doubt over MMR, venturing much further into the realm of conjecture. Reporters kicked into horror mode with frightening headlines in all the British tabloids – the press coverage sent shock waves through the autism parents’ community and far beyond. For Rimland, the Wakefield study was the smoking gun he’d been waiting for. In the coming years, many members of his network would become convinced that autism was the product of multiple insults to a child’s developing brain from vaccines and/or vaccine preservatives like thimerosal (a mercury compound which was quickly phased out of most vaccines despite later studies showing that this had no impact on the rising rates of autism diagnosis). Major media outlets and journalists found the David-and-Goliath angle – a visionary doctor backed by an army of warrior moms going up against a conspiracy between Big Pharma and government officials – irresistible. In November 2000, Wakefield appeared on 60 Minutes to blame the MMR for an epidemic of autism.
Rates of immunization for measles, mumps, and pertussis began to fall worldwide. Vaccines were portrayed as ineffective and disease was embraced (pox parties).
Wakefield’s case series became one of the most influential articles in the history of public health – and then it would become one of the most widely and thoroughly refuted as numerous problems with its methodology, ethics, and reporting were uncovered. Wakefield had also failed to disclose a substantial financial agreement with lawyers planning to mount a class-action suit against vaccine manufacturers. The study was finally retracted by the Lancet in 2004. Wakefield was stripped of his medical license in 2010 and the British Medical Journal denounced his study as an “elaborate fraud” in 2011. A meta-analysis of a dozen epidemiological studies concluded that “The current literature does not suggest an association between ASD and the MMR vaccine. While the risk of autism from MMR remains theoretical, the consequences of not vaccinating are real.”
Lorna Wing regarded the vaccine controversy with a sense of tragic inevitability. There was no question that the changes they wrought in the DSM criteria were the primary factor responsible for rising numbers. By making the diagnosis available to mildly impaired children and adults, they and their families no longer had to struggle along without help as they had in the 1960s. “These people had always existed”. After their development of the concept of Asperger’s syndrome, traits of the syndrome were common. Just as it is difficult to draw lines between Kanner’s and Asperger’s, it is also between Asperger’s and normality. As a dash of autism is essential for success in science and art, perhaps the advent of the internet has accelerated an evolutionary tendency in that direction.
The most insidious effect of Wakefields’s case study and the firestorm of controversy that followed it was hijacking the movement created by parents, diverting it from its original mission of demanding services and accommodations in education into a rancorous debate about vaccines. In the heat of the Autism Wars, virtually every other issue – such as the pressing need for programs to help autistic teenagers prepare for employment – was swept off the table.
Fears of an epidemic have also skewed the direction of autism research. Most studies backed by the NIMH and other federal agencies and private organizations like Autism Speaks are committed to an endless search for potential causes and risk factors, while projects devoted to improving the quality of autistic people’s lives are perpetually underfunded.
But that is starting to change as autistic people are taking control of their own destinies, with the help of parents who no longer believe that what their children need most is a cure.