BERNARD RIMLAND
An obsessively curious Navy psychologist named Bernard Rimland wrote a book called Infantile Autism. With an autistic child, he was a self-taught outsider in the field. He firmly established autism as an inborn condition based on genetics and neurology rather than the complexities of the developing psyche. The book’s popularity inspired him to start the National Society for Autistic Children, which helped end decades of shame and isolation for families like his and lobbied for legislation based on the principle that all children have the right to an education, including those with developmental disabilities. By crowdsourcing effective treatments, he gave parents a network of hope and progress at a time when research in the field was at a virtual standstill because it was still believed to be so rare.
He made direct communication with parents and challenged the authority of the psychiatric establishment. His E-1 form was the first standardized clinical tool for an autism assessment. Up to that point, the diagnosis was made strictly on the basis of subjective observation by clinicians schooled in Kanner’s and Eisenberg’s methods. Children who didn’t precisely fit Rimland’s version of Kanner’s model got only a diagnosis of “autistic-like.” In this act of winnowing, Rimland was again following in the footsteps of his mentor, who told him that nine out of ten children sent to his office with an autism diagnosis by other clinicians were not “true cases.” He planted the seeds of a revolution.
Like Kanner, he bitterly opposed the notion of autism as a continuum. He had controversial theories that the unified condition called autism is composed of many distinct subtypes – anticipating major shifts in mainstream science by decades. But by promoting the hope that autistic children could be fully “recovered” from autism with biomedical treatment, he diverted the energy and focus of the parent’s movement he helped create into an endless quest for a cure.
He adopted Linus Pauling’s theories of orthomolecular medicine – instead of using drugs they manipulated water, vitamins, minerals, protein, and salt. Pauling had great credibility as one of the few two-time Nobel winners in history to transform the supplement business from a marginal enterprise serving health food stores into an alt-powerhouse with annual sales rivalling the pharmaceutical industry – minus the pesky Food and Drug Administration (FDA0 regulations.
The hardest thing to come by for parents of autistic children in the 60s was hope. Clinicians had little to offer beyond the standard advice to institutionalize the child and quietly remove their pictures from the family album. Parents determined to raise their children at home were condemned by trapping them in a psychically toxic environment. Most psychologists in America were still convinced that they were constitutionally incapable of learning. Rimland used the terms training and conditioning. He also noted that little had been published about true cases grown to maturity.
Rimland also became a believer in megadoses of vitamins, encouraged by Linus Pauling’s writing. Parents gave testimonials about their effectiveness. Potent multiple B vitamins, several grams of vitamin C and niacinamide, pyridoxine, and pantothenic acid (other B vitamins) were added. Magnesium was eventually also added to the advice of celebrity nutritionist Adele Davis. The drug was marketed as Deaner by Riker Pharmaceuticals. Parents rated the child’s progress with biweekly reports charting speech, eating patterns, tantrums, and alertness.
In the pharmaceutical industry, the gold standard of drug development is the double-blind placebo-controlled trial. Inevitably, both groups of patients will show some improvement because of the placebo effect. At the root of this is that the attention in an environment of care produces beneficial changes in the mind and body of the patient even in the absence of the active drug. The mere act of swallowing a pill triggers cascades of hormones and neurotransmitters that can reduce pain and inflammation, enhance motor coordination, boost brain activity, lift mood, and improve digestion. These effects are pervasive as if the body contains a self-healing network that is activated by the knowledge that one is receiving care. (Exercise and meditation also prompt this network into action). In the volunteers in the placebo group and the experimental group show comparable amounts of benefit, the FDA judges the drug to be ineffective.
But Rimland decided not to use this well-established model of drug testing. With 45% of parents reporting that the vitamins “definitely helped” their children, Rimland was thrilled. He deflected all criticisms in a non-scientific argument as all data was derived from subjective reports by parents and physicians who were likely to be enthusiastic about the project. Statisticians with access to the raw data concluded that no reliable information about the reaction of the patients to the vitamins could be obtained using Rimland’s computer-clustering scheme. The design of the experiment – with parents as evaluators – was anything but “blind” and a perfect incubator for placebo effects. Rimland’s description was that the vitamins were a “new psychic-energizer”, exactly the phrase used by Riker Laboratories used to promote them in ads in medical journals.
Deaner was aggressively marketed for a wide variety of fuzzily defined symptoms, including “problem” behaviour, emotional instability, hyperactivity, and underachievement at school. The American Medical Association (AMA) was less enthused and issued a cautionary note about Deaner. The litany of vague complaints for which it was commonly prescribed “is characterized by the difficulty in their evaluation, their spontaneous fluctuations, and their great susceptibility to suggestion.”
In other words, Deaner was the perfect placebo. It was also a gold mine for Riker Laboratories until it was finally taken off the market by the FDA in 1983 after studies concluded that the drug didn’t even rate as “possibly effective” and also put children with epilepsy at heightened risk for grand mal seizures. Supplement manufacturers quickly stepped into the breach, promoting a mixed berry flavour called DMAE, combining it with fatty acids, soy, and other health food staples
Rimland eventually encouraged his growing army of parent experimenters to try several treatments at once, making it nearly impossible to tease out the benefits and side effects of any single one. This gave the parents a tremendous sense of hope and momentum at a time when the mainstream science of autism was advancing at a snail’s pace. He grew more isolated from his colleagues while being regarded as a lone voice in the wilderness by the parents in his network. Things finally came to a head at NSAC (by then called the Autism Society of America) when Rimland called for a motion requiring all members to put their children on a high-dose vitamin B-12 regimen immediately after diagnosis. Parents rebelled and, instead of backing down, Rimland went all in and resigned. He no longer had the clout to make such a power play and was voted off the board of his own organization. The once-strong NSAC had been rented in two.
OLE IVAR LOVAAS
A psychologist from Los Angeles, he was also obsessed with the same obscure childhood disorder. He had no patience with psychoanalysis or the tendentious speculations of theory-based psychiatry. He developed behaviour modification and became a mentor to a generation of psychologists, therapists, and teachers at UCLA. Rewards and punishment were used in a tough-minded approach to teaching these children skills in their homes that would enable them to stay out of institutions and live semi-independent lives. Both he and Rimland believed that the permissive, indulgent attitude toward autistic children was damaging. Self-stimming was no longer tolerated. By forming an alliance and reaching out directly to parents, they gained a level of credibility and influence far beyond that gotten through peer-reviewed channels.
NATIONAL SOCIETY FOR AUTISTIC CHILDREN
One nonverbal autistic child put together a jigsaw puzzle, his mother accidentally made a mess of it, and the child quickly reassembled the puzzle with the pieces upside down, though he could no longer see the pattern they formed as a cue to their proper placement. He started speaking again and was able to instantly name the day of the week for nearly any date in the past or future. He would surprise his mother by recalling things that the family had done years before. Once the diagnosis of autism was made, his mother started the National Society for Autistic Children. They talked of ways for parents to work together effectively to demand access to education and other services for their children. Chapters of the NSAC sprang up all over the country. They knew that their children needed help, that no one knew what was wrong with them, and that leaders in all the helping professions were blaming the parents for their children’s disability. Naturally, they were angry. Medical lending libraries were established all over the country. The NSAC helped reframe autism in the minds of professionals from a form of childhood “emotional disturbance” to an inborn disability that required life-long care and support.
Sign language turned out to be a popular medium of communication at some institutions even for hearing students. Too much emphasis was being placed on teaching autistic children to speak when what was truly essential was enabling them to communicate.
For years, the society’s bimonthly newsletter was the only source of breaking news in the world of autism for families. Autism became accepted not as a single clinical entity but was composed of multiple distinct subtypes. Autistic intelligence – savant skills like enhanced ability in music, memory, art, mathematics, science, and technology became appreciated – very young children who could speak and write in multiple languages, had a total recall for various kinds of statistics, could instantly identify a note played on a piano, were able to calculate square roots in their heads, had precocious abilities in drawing, and were so aware of subtle aspects of their environments that they seemed to have ESP. And these were children who had all been branded as “profoundly retarded.”
Another child demonstrated the untapped potential of these children. “He reads and understands books on electronics and uses the theories to build devices . . . He understands the theory of electronics, astronomy, music, navigation, and mechanics. He knows an astonishing amount about how things work and is familiar with technical terms. By the age of 12, he could find his way all over the city on his bike with a map and compass. Joe is supposed to have an IQ of 80.”
Rimland theorized that the achievements of geniuses like Einstein, Newton, and world chess champion Bobby Fischer were related to the fact that these men “manifested signs – sometimes several signs – of autism. “It may not be too far amiss to suggest that some autistic individuals are incipient geniuses whose eccentricities are so severe and incapacitating that all but minimal participation in the ‘normal’ world is precluded.”
Eric Schopler launched Division TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) in North Carolina, the first statewide autism education program in the US and the model for many other progressive programs since.
At the second NSAC conference in 1970, a young autistic man spoke. Twenty-one-year-old William Donovan made clear that he was very aware of his environment, even when people assumed he was oblivious. “As an autistic child, I felt very uncomfortable. I tore up newspapers, pulled bedsheets off the beds, pulled books out of the bookcases, bounced cans played with spinning tops, and broke every one of them. I would like to take this opportunity to tell you that I destroyed things because I couldn’t talk. I spun things because I couldn’t talk. It also made me feel good, of course. I hated going to school because the classrooms were too confining. I didn’t like the idea of the other kids making fun of me and I didn’t want anyone to pass judgment on me as to how good or bad I was.” He described his teachers hitting him with rulers, locking him in a closet, and talking about him as if he weren’t there. He spoke in echolalia until he was ten because he couldn’t, not wouldn’t, talk normally.
He had been hired at a packaging factory. His first day of work was the happiest day of his life. He talked about his love of Charlie Brown and playing music. He concluded “I feel wonderful here today. I feel like the President. I hope all autistic children could grow up to be socially acceptable.
Donavan’s mother talked about how she had finally worked up the courage to take her son everywhere instead of hiking him in the house (or committing him to an institution, as she and her husband had been advised to do). “Never be embarrassed about taking them places.”
Both Rimland and Lovaas followed the path of making the children more “socially acceptable” and searched for an orthomolecular cure for autism. But parents were not interested in finding a cure but instead wanted more services.
In 1974, West Virginia became the first state to specifically include autism in its mandatory public education laws, opening the doors of classrooms to hundreds of kids for the first time. The Education for All Handicapped Children Act was signed into law by President Gerald Ford in 1975, which became the Individuals with Disabilities Education Act (IDEA) that is in force today. Education services for adults were demanded. The traditional caretakers for autistic adults who were not in institutions were stay-at-home moms, and in the 1960s more and more women were entering the workforce.
Over time the NSAC’s focus on services and Rimland’s search for a cure would diverge, resulting in Rimland being voted off the board of his own organization.
After beginning with acquisition trials that used positive reinforcement to encourage behaviours (when the behaviours improved dramatically), Lovaas used extinction trials that withheld smiles and praise. But the children regressed and resumed beating themselves. The possibility that the children were responding in a comprehensible way to the bizarre behaviour of the people around them didn’t enter Lovaas’s mind. He added physical punishment (aversive stimuli) to try to extinguish bad behaviour. He was criticized but failed to heed the advice of other authorities. The sphere of behaviour targeted for punishment included hand flapping, rocking, spinning, and other forms of self-stimulation.
Researchers eventually discovered that autistic people sim to reduce anxiety, and also simply because it feels good. Harmless forms of self-stimulation may facilitate learning by freeing up executive-functioning resources in the brain that would otherwise be devoted to suppressing them.
Lovaas did not give up his extinction experiments. For tantrum behaviours, such as screaming, throwing objects, and hitting themselves, extinction was also used. But the results were disappointing. A loud noise of over 100 decibels and eventually electric shock was added. Lovaas ventured that avoidance of pain generated contentment. He characterized it as a triumph of rationality over sentimentality – “punishment can be a very effective tool for behaviour change.” He added food and water deprivation. He was viewed by some as a “visionary”. This shaped public perceptions of autism for decades.
Many NSAC parents refused to use aversives.
Lovaas extended his theories to the “Feminine Boy Project”, in men and women who applied for gender reassignment surgery and wanted to see if operant conditioning could be employed as an early intervention in cases of gender confusion. He targeted the behaviours for extinction including “limp wrist” “swishy gait”, the girlish “hyperextension of the limbs in moments of exuberance, and prissy declarations like “goodness gracious” and “oh, dear me.” Masculine behaviours were rewarded and feminine behaviours were punished. Their success turned into a cash cow for UCLA. Their star patient hanged himself at 38, after decades of depression.
The fundamental view became that it is easier to change a child’s behavior than it is to destigmatize that behavior in society – whether it be limp wrists or flapping hands.
The ethical debate raged about whether intentionally inflicting pain in the name of treatment is a way to treat human beings, even if they are autistic and self-injurious. In 1988, the Autism Society of America (ABA) banned aversive techniques. But aversives were promoted well past that – withholding food and administering physical punishment to modify behavior – still are used to the present day, even in the face of public outcry against their use.
Lovaas became disappointed that he produced no sudden cures. He learned that even self-injurious children were communicating in their own ways. Exuberant use of echolalia turned out to be a distinctively autistic way of acquiring language. Many of the behaviours he had put children through hell to extinguish were attempts to find channels for self-expression. But one thing Lovaas never changed his mind about was that the best hope was for them to become “normal” – purged of all traces of autistic behaviour. He claimed that it was essential to insulate his autistic subjects from exposure to other autistic children, calling it the “kiss of death”. His program entailed a level of commitment and support that was beyond the reach of most families. A documentary claimed that, without his treatment, more than 95% of autistic children will require custodial care for the rest of their lives.
Other long-time experts in the field, remained skeptical. He was accused of front-loading his data by excluding “low-functioning” children while favouring those with unusually high IQs. Families in his studies had more resources available to them. Calling autistic children “the kiss of death” in a classroom could result in kids all over the country being denied an education. Independent researchers have never been able to replicate the extraordinary findings in his 1987 paper.
STEVE EDELSON
An undergraduate psychology/sociology major at UCLA, he had been raised as a Christian Scientist, a sect founded in 1875 by a self-anointed prophet named Mary Baker Eddy who believed that diseases are not healed by doctoring but by submission to God. Traditionally, Christian Scientists eschew most aspects of modern medicine, including drugs, tests, hospitals, and vaccines. Edelson’s curiosity about the neurochemistry of autism meshed perfectly with Rimland’s interest in orthomolecular medicine. Together, they authored a book called Recovering Autistic Children that became the bible of the Biomed movement, along with books like Jacqueline McCandless’s Children with Starving Brains.
The effort culminated in the launch of Defeat Autism Now! – a network of clinicians and alt-med practitioners on the GFCF diet and other treatments. At DAN! – sponsored events all over the country, “recovered” children were paraded in front of cheering crowds in an atmosphere befitting tent revival meetings. 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.
By then, the estimated prevalence of autism was spiking dramatically. Rimland looked beyond genetics for an explanation hidden somewhere in the toxic modern world. Eventually, he would zero in on vaccines and mercury as the most likely triggers of what appeared to be a rapidly accelerating epidemic of Kanner’s once-rare disorder, launching the Autism Wars in earnest.
For parents of newly diagnosed children, the turn of the millennium was a time of great fear and great hope. The fear that their children had been stolen away from them by a mysterious and terrifying disorder triggered by routine events like taking a recommended drug during pregnancy or inoculating them against measles.
The hope is that ABA or the DAN! protocol could make their children normal and new technologies like DNA sequencing would uncover the elusive “autism gene” would make this baffling condition a thing of the past.
Catherine Maurice’s Let Me Hear Your Voice expounded the thought that if parents invested enough time, effort, and expense, children would lose their diagnosis. Teams of therapists were lined up to give children forty hours a week of one-on-one ABA at home, on top of speech and occupational therapy. Parents went to DAN! conferences and children seemed to benefit from some of the alternative treatments recommended by the members of Rimland’s network.
A new group called Cure Autism Now (CAN) proposed eradicating autism. It was one of several parent groups launched in the late 1990s with similar names (Talk About Curing Autism was founded in 2000) that focused on biomedical interventions and genetic research rather than on improving access to services for families. Focusing on the need for services seemed like an admission of defeat at a time when the possibility of vanquishing autism permanently seemed to be in the air.
Autism Speaks became the largest autism fundraising organization in the world.
