In the 1970s, a fellow student used to confide in me about his family problems. His little girl had been diagnosed with autism. While he showed plenty of concern for the child, my friend seemed even more troubled over his wife. Good understanding escaped me then. I had yet to hear of “refrigerator mothers,” a concept meant in early research to explain autism’s origins. Even Bruno Bettelheim largely found autism’s cause in mothers who did not give their children the love they needed for proper mental and emotional development. My friend’s 23-year-old wife, I am now convinced, must have been tormenting herself as too heartless to care for her baby.
Already in 1964, research psychologist Bernard Rimland had debunked the psychogenic theory of autism’s origins. He did it in a book called Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. But some ideas die hard. As late as 1990, Bettelheim insisted on the older explanation. Today, Rimland’s theory, a biological approach that relies on genetic predisposition and environmental triggers, commands almost universal acceptance.
Rimland worked out the theory at his family home in Kensington. After becoming the first person to receive a master’s degree from the psychology department at SDSU, he earned his Ph.D. from Pennsylvania State University in 1953. He then returned to San Diego and worked for the Navy in personnel research.
In 1956, Rimland’s wife Gloria gave birth to a son who displayed immediate developmental disorders. The child was diagnosed with infantile autism, and Rimland began a long quest to understand it. In 1965, after the appearance of his book, he cofounded the Autism Society of America, with headquarters now in Bethesda, Maryland. Two years later, he founded the Autism Research Institute in Kensington. Today, the two organizations are the foremost centers worldwide for coordinating research and support for the families of autistic children.
Matt Kabler, who is 32, is speaking with me in the Autism Research Institute’s small cluttered office on the northeast corner of Adams Avenue and Edgeware Road. Kabler is the institute’s director of operations. He points out the window at the organization’s first location a block west and across Adams.
I expected that shock jock Michael Savage’s recent comments about autism must have caused the institute to be flooded with media inquiries. But not even local media outlets have called, says Kabler, despite the national media frenzy that erupted when on July 16 Savage belittled the disorder. Savage called autism medicine a “fraud, a racket.… I’ll tell you what autism is,” he ranted. “In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is. What do you mean they scream and they’re silent? They don’t have a father around to tell them, ‘Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.’ ”
But I am more interested in Bernard Rimland, who died in November 2006 at age 78. “During the time he was doing all that research, he also worked for the Navy,” says Kabler, who in recent years became Rimland’s assistant after being a longtime friend of the family. “The man hardly ever slept.”
What motivated Rimland’s zealous research was the inadequacy of the medical approaches to his son’s affliction. “A pediatrician told the family in 1956,” Kabler tells me, “that nothing was unusual in their baby’s behavior, even though he would sit in a corner and scream for hours. The Rimlands knew there had to be much more to it.”
Yet despite the biological approach, researchers today still have a poor understanding of autism’s causes. Consensus does exist that a genetic predisposition underlies the malady. Increasingly, heavy metal toxins from air pollution are taking much of the blame. And Rimland had been a leading proponent of the view that mercury in vaccinations caused many cases of autism. The medical establishment has disputed that opinion, but manufacturers have removed mercury from most vaccination formulas by now.
In the absence of brain imaging and biochemical analysis that provide unambiguous diagnoses, however, there have always been heated disputes over the nature of autism. From the beginning, controversy swirled around Rimland’s neural theories, according to Kabler. And today, to compound matters, he says, “Autism is viewed as a spectrum disease with infantile autism at one extreme, attention deficit disorder and hyperactivity at the other, and others such as Asperger’s syndrome in between.” In addition to the many types of autism, there are a great variety of ways to treat it.
So it should be no surprise that a Michael Savage could still inject into the discussion of autism a heterodox opinion. What is disturbing, however, is the hyperbole in his July 16 statements. Savage defended himself to CNN’s Glenn Beck by saying that people took his words out of context. He said his concerns were with two categories of children: the ones who would not get the treatment they need because of wrong diagnoses; and the cases of children with genuine autism who are having resources they need depleted by the overload of diagnoses.
But how do you explain away the idea that 99 out of 100 cases of autism are bogus? Then the label of autism as the “diagnosis du jour, as asthma once was,” also a Savage gem. Finally, the placement of blame on parents for evading proper discipline through the diagnosis.
It was these views that enraged most people in the autism community, says Kabler, who disputes the notion that too many children these days are viewed as autistic. “When it comes to misdiagnosis, we actually get more children who should be treated as autistic but are seen as having basic developmental disorder, even though that diagnosis is just a label that means nothing. Many of its symptoms match those of autism exactly, but the child then doesn’t qualify for autism services. So I believe that there are many more children being misdiagnosed in a way opposite to what Michael Savage believes.”
I ask Kabler to compare childhood behaviors that result from too much parental permissiveness with those that are genuinely autistic. “They’d be completely different,” he says. “Nonautistic children could be, as Michael Savage says, bratty, always yelling, for instance, ‘I want this and I want that.’ But they’re not going to be sitting in the corner screaming and rocking up and down or running around in a circle.” There are the other classic symptoms of autism too, the absence of social interaction, repetitive activities, and difficulties with language.
“On the message boards of the autism community,” Kabler continues, “people couldn’t believe that someone would be taking a national audience back to the Bruno Bettelheim days, when autism was blamed on parenting. Today we know that autism is not a psychological disease, that there are underlying biological issues which can be addressed to help the child. Everyone who has close contact with autism knows that these children are not brats, that a lot of them are in severe pain, and their behaviors are how they express that pain or get their wishes out.”
It seems, I tell Kabler, that regarding diseases, folks often want to find some human factor to blame. “You know,” he says, “there have been many divorces among autism families, where one parent blames the other. At our conferences, we’ve been getting 80 to 90 percent moms. With the diets and interventions we recommend, the dads often said, ‘Whatever, I don’t believe this.’ But that’s getting better and we’re seeing more dads.
“Dr. Rimland always used to encourage people never to give up trying to improve the lives of their autistic children. You never can tell when they will suddenly improve. Autistic people have come out of their shells suddenly in their adult lives.”
Kabler shows me an institute chart called “Parent Ratings of Behavioral Effects of Biomedical Interventions.” The chart lists, among other things, the number of parents reporting and whether drugs or nutrients caused their children to get better or worse. Thirty-six percent of parents reported that Prozac, for instance, made their children better, while 32 percent said it made them worse. For Ritalin, it was 29 percent better, 45 percent worse.
Rimland, says Kabler, was a great believer in the efficaciousness of natural substances. “He told me,” says Kabler, “ ‘The bodies of autistic children are not suffering from an absence of Ritalin.’ Of course, drugs like Ritalin sometimes have to be used to prevent a violent child from hurting himself or others in his family. But natural substances are usually better.” The parental ratings chart reports: 56 percent of children taking fatty acid supplements getting better, while only 2 percent got worse; and 60 percent of those receiving hyperbaric oxygen therapy got better, while 5 percent got worse. Magnesium, for years a favorite of Rimland, shows 29 percent getting better and 6 percent getting worse.
Gloria Rimland still lives in the family home in Kensington. After her autistic son Mark, she had a son and a daughter. Neither she nor Mark likes giving interviews, says Kabler, who compensates by telling me of an event long ago. “At a banquet, an otherwise well-meaning woman sat down next to Gloria and said, ‘You must feel terrible that you caused your son’s autism.’ ”
The truth, it seems, is that both father and mother gave their son every ounce of their energy to improve his life. Though Mark Rimland had early difficulties with language, according to Kabler, today he speaks normally, albeit without total control of pitch. He has become an accomplished artist. I am looking at his lovely watercolors that hang high on the wall of the Autism Research Institute.