I first read this about 7 years ago. It really stuck with me, since I am in the computer field, have kids, and know many other families some of which have two techies as parents. And some kids with problems.
I see all 4 of my siblings and I as functional Asperger people.
Autism spectrum is part genetic, part environmental. Love your kids. Raising them, talking to them, teaching them, playing with them should be your most important hobby from when they are born. especially if you are a high IQ person.
If you always work at being extroverted with your baby and sharing sound games even before they can talk, they get less chance to become introverted. Think out loud. Ask them what they want. Name it show it. At first they'll point, then they will make sounds. Then they will say it.
If you don't teach them, they way may go into their own silent world.
His hypothesis added the burden of guilt to the grief of having an autistic child, and made autism a source of shame and secrecy, which hampered efforts to obtain clinical data. The hypothesis has been thoroughly discredited. Richard Pollak's The Creation of Dr. B exposed Bettelheim as a brilliant liar who concocted case histories and exaggerated both his experience with autistic children and the success of his treatments. One thing nearly everyone in the field agrees on: genetic predisposition. Identical twins share the disorder 9 times out of 10. But the debates about the causes of autism are certainly not over. Controversies rage about whether environmental factors - such as mercury and other chemicals in universally administered vaccines, industrial pollutants in air and water, and even certain foods - act as catalysts that trigger the disorder. Bernard Rimland, the first psychologist to oppose Bettelheim and promote the idea that autism was organic in origin, has become a leading advocate for intensified investigation in this area. The father of an autistic son, Rimland has been instrumental in marshaling medical expertise and family data to create better assessment protocols. The one thing that almost all researchers in the field agree on is that genetic predisposition plays a crucial role in laying the neurological foundations of autism in most cases. Studies have shown that if one identical twin is autistic, there's a 90 percent chance that the other twin will also have the disorder. If parents have had one autistic child, the risk of their second child being autistic rises from 1 in 500 to 1 in 20. After two children with the disorder, the sobering odds are 1 in 3. (So many parents refrain from having more offspring after one autistic child, geneticists even have a term for it: stoppage.) The chances that the siblings of an autistic child will display one or more of the other developmental disorders with a known genetic basis - such as dyslexia or Tourette's syndrome - are also significantly higher than normal. The bad news from Santa Clara County raises an inescapable question. Unless the genetic hypothesis is proven false, which is unlikely, regions with a higher than normal distribution of people on the autistic spectrum are something no researcher could ask for: living laboratories for the study of genetic expression. When the rain that fell on the Rain Man falls harder on certain communities than others, what becomes of the children? The answer may be raining all over Silicon Valley. And one of the best hopes of finding a cure may be locked in the DNA sequences that produced the minds that have made this area the technological powerhouse of the world.
It's a familiar joke in the industry that many of the hardcore programmers in IT strongholds like Intel, Adobe, and Silicon Graphics - coming to work early, leaving late, sucking down Big Gulps in their cubicles while they code for hours - are residing somewhere in Asperger's domain. Kathryn Stewart, director of the Orion Academy, a high school for high-functioning kids in Moraga, California, calls Asperger's syndrome "the engineers' disorder." Bill Gates is regularly diagnosed in the press: His single-minded focus on technical minutiae, rocking motions, and flat tone of voice are all suggestive of an adult with some trace of the disorder. Dov's father told me that his friends in the Valley say many of their coworkers "could be diagnosed with ODD - they're odd." In Microserfs, novelist Douglas Coupland observes, "I think all tech people are slightly autistic." Though no one has tried to convince the Valley's best and brightest to sign up for batteries of tests, the culture of the area has subtly evolved to meet the social needs of adults in high-functioning regions of the spectrum.
Local facilities, such as the Stanford Pervasive Development Disorders Clinic and its counterpart at UC San Francisco, are swamped. The Stanford clinic is able to perform only two or three diagnoses a week. It currently has a two- to six-month waiting list. For Rick Rollens, former secretary of the California Senate and cofounder of the MIND Institute, the notion that there is a frightening increase in autism worldwide is no longer in question. "Anyone who says this epidemic is due to better diagnostics," he says, "has his head in the sand."
Autism's insidious style of onset is particularly cruel to parents, because for the first two years of life, nothing seems to be wrong. Their child is engaged with the world, progressing normally, taking first steps into language. Then, suddenly, some unknown cascade of neurological events washes it all away. One father of an autistic child, Jonathan Shestack, describes what happened to his son, Dov, as "watching our sweet, beautiful boy disappear in front of our eyes." At two, Dov's first words - Mom, Dad, flower, park - abruptly retreated into silence. Over the next six months, Dov ceased to recognize his own name and the faces of his parents. It took Dov a year of intensive behavioral therapy to learn how to point. At age 9, after the most effective interventions available (such as the step-by-step behavioral training methods developed by Ivar Lovaas at UCLA), Dov can speak 20 words. Even children who make significant progress require levels of day-to-day attention from their families that can best be described as heroic. Marnin Kligfeld is the founder of a software mergers-and-acquisitions firm. His wife, Margo Estrin, a doctor of internal medicine, is the daughter of Gerald Estrin, who was a mentor to many of the original architects of the Internet (see "Meet the Bellbusters ," Wired 9.11, page 164). When their daughter, Leah, was 3, a pediatrician at Oakland Children's Hospital looked at her on the examining table and declared, "There is very little difference between your daughter and an animal. We have no idea what she will be able to do in the future." After eight years of interventions - behavioral training, occupational therapy, speech therapy - Leah is a happy, upbeat 11-year-old who downloads her favorite songs by the hundreds. And she is still deeply autistic. Leah's first visit to the dentist required weeks of preparation, because autistic people are made deeply anxious by any change in routine. "We took pictures of the dentist's office and the staff, and drove Leah past the office several times," Kligfeld recalls. "Our dentist scheduled us for the end of the day, when there were no other patients, and set goals with us. The goal of the first session was to have Leah sit in the chair. The second session was so Leah could rehearse the steps involved in treatment without actually doing them. The dentist gave all of his equipment special names for her. Throughout this process, we used a large mirror so Leah could see exactly what was being done, to ensure that there were no surprises." Daily ordeals like this, common in the autistic community, underline the folly of the hypothesis that prevailed among psychologists 20 years ago, who were convinced that autism was caused by a lack of parental affection. The influential psychiatrist Bruno Bettelheim aggressively promoted a theory that has come to be known as the "refrigerator mother" hypothesis. He declared in his best-selling book, The Empty Fortress, "The precipitating factor in infantile autism is the parent's wish that his child should not exist. ... To this the child responds with massive withdrawal." He prescribed "parentectomy" - removal of the child from the parents - and years of family therapy.
Now it's understood to be much more common - perhaps 20 times more. But according to local authorities, the picture in California is particularly bleak in Santa Clara County. Here in Silicon Valley, family support services provided by the DDS are brokered by the San Andreas Regional Center, one of 21 such centers in the state. SARC dispenses desperately needed resources (such as in-home behavioral training, educational aides, and respite care) to families in four counties. While the autistic caseload is rising in all four, the percentage of cases of classic autism among the total client population in Santa Clara County is higher enough to be worrisome, says SARC's director, Santi Rogers. "There's a significant difference, and no signs that it's abating," says Rogers. "We've been watching these numbers for years. We feared that something like this was coming. But this is a burst that has staggered us in our steps." It's not easy to arrive at a clear picture of whether there actually is a startling rise in the incidence of autism in California, as opposed to just an increase in diagnoses. One problem, says Linda Lotspeich, director of the Stanford Pervasive Developmental Disorders Clinic, is that "the rules in the DSM-IV don't work." The diagnostic criteria are subjective, like "Marked impairment in the use of nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction." "How much 'eye-to-eye gaze' do you have to have to be normal?" asks Lotspeich. "How do you define what 'marked' is? In shades of gray, when does black become white?" Some children will receive a diagnosis of classic autism, and another diagnosis of Asperger's syndrome, from two different clinicians. Tony Attwood's advice to parents is strictly practical: "Use the diagnosis that provides the services." While diagnostic fuzziness may be contributing to a pervasive sense that autism is on the rise, Ron Huff, the consulting psychologist for the DDS who uncovered the statistical trend, does not believe that all we're seeing now is an increase in children who would have previously been tagged with some other disability, such as mental retardation - or overlooked as perfectly healthy, if quirky, kids. "While we certainly need to do more research," says Huff, "I don't think the change in diagnostic criteria will account for all of this rise by any means." The department is making its data available to the MIND Institute at the University of California at Davis, to tease out what's behind the numbers. The results of that research will be published next year. But the effects of a surging influx are already rippling through the local schools. Carol Zepecki, director of student services and special education for the Palo Alto Unified School District, is disturbed by what she's seeing. "To be honest with you, as I look back on the special-ed students I've worked with for 20 years, it's clear to me that these kids would not have been placed in another category. The numbers are definitely higher." Elizabeth Rochin, a special-ed teacher at Cupertino High, says local educators are scrambling to create new resources. "We know it's happening, because they're coming through our schools. Our director saw the iceberg approaching and said, 'We've got to build something for them.'" The people scrambling hardest are parents. In-home therapy alone can cost $60,000 or more a year, and requires so much dedication that parents (particularly mothers) are often forced to quit their jobs and make managing a team of specialists their new 80-hour-a-week career. Before their children become eligible for state funding, parents must obtain a diagnosis from a qualified clinician, which requires hours of testing and observation.
Kanner went on to launch the field of child psychiatry in the US, while Asperger's clinic was destroyed by a shower of Allied bombs. Over the next 40 years, Kanner became widely known as the author of the canonical textbook in his field, in which he classified autism as a subset of childhood schizophrenia. Asperger was virtually ignored outside of Europe and died in 1980. The term Asperger syndrome wasn't coined until a year later, by UK psychologist Lorna Wing, and Asperger's original paper wasn't even translated into English until 1991. Wing built upon Asperger's intuition that even certain gifted children might also be autistic. She described the disorder as a continuum that "ranges from the most profoundly physically and mentally retarded person ... to the most able, highly intelligent person with social impairment in its subtlest form as his only disability. It overlaps with learning disabilities and shades into eccentric normality." Asperger's notion of a continuum that embraces both smart, geeky kids like Nick and those with so-called classic or profound autism has been accepted by the medical establishment only in the last decade. Like most distinctions in the world of childhood developmental disorders, the line between classic autism and Asperger's syndrome is hazy, shifting with the state of diagnostic opinion. Autism was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders in 1980, but Asperger's syndrome wasn't included as a separate disorder until the fourth edition in 1994. The taxonomy is further complicated by the fact that few if any people who have Asperger's syndrome will exhibit all of the behaviors listed in the DSM-IV. (The syn in syndrome derives from the same root as the syn in synchronicity - the word means that certain symptoms tend to cluster together, but all need not be present to make the diagnosis.) Though Asperger's syndrome is less disabling than "low-functioning" forms of autism, kids who have it suffer difficulties in the same areas as classically autistic children do: social interactions, motor skills, sensory processing, and a tendency toward repetitive behavior. In the last 20 years, significant advances have been made in developing methods of behavioral training that help autistic children find ways to communicate. These techniques, however, require prodigious amounts of persistence, time, money, and love. Though more than half a century has passed since Kanner and Asperger first gave a name to autism, there is still no known cause, no miracle drug, and no cure. And now, something dark and unsettling is happening in Silicon Valley.
In the past decade, there has been a significant surge in the number of kids diagnosed with autism throughout California. In August 1993, there were 4,911 cases of so-called level-one autism logged in the state's Department of Developmental Services client-management system. This figure doesn't include kids with Asperger's syndrome, like Nick, but only those who have received a diagnosis of classic autism. In the mid-'90s, this caseload started spiraling up. In 1999, the number of clients was more than double what it had been six years earlier. Then the curve started spiking. By July 2001, there were 15,441 clients in the DDS database. Now there are more than seven new cases of level-one autism - 85 percent of them children - entering the system every day. Through the '90s, cases tripled in California. "Anyone who says this is due to better diagnostics has his head in the sand." California is not alone. Rates of both classic autism and Asperger's syndrome are going up all over the world, which is certainly cause for alarm and for the urgent mobilization of research. Autism was once considered a very rare disorder, occurring in one out of every 10,000 births.