. . . Winter 2003
Mason Abler's parents, Jim and Jackie, recognized autistic symptoms in their son when he was only 16 months old, six months to two years earlier than most children are diagnosed with the neurological disorder that impairs the ability to communicate and interact with others. If Prof. Catherine Lord, director of U-M's new Autism and Communicative Disorders Clinic, succeeds in her current research, diagnoses as early as 18 months will become routine. "I'm confident that we'll figure out how to identify the disorder that early," says Lord, who developed the current diagnostic instruments, an interview scale and a social-observation scale, in 1989, updated it in 1994 and plans to issue a further refinement this year. A scholar with a quiet, gentle demeanor, Lord finds herself in the
center of heated controversies surrounding autism. The news media have
carried many stories about an "autism epidemic." And, indeed,
the latest study by the Centers for Disease Control and Prevention (CDC)
confirms that the prevalence of autism in the United States is exploding.
The study, conducted in Atlanta in 1996 and published in the January
1, 2003, edi
The vaccine scareAlong with most news stories about the "epidemic" are assertions identifying thimerosal, a now-discontinued mercury compound used in mumps-measles-rubella (MMR) vaccines, as the probable cause Lord bluntly states her views on both controversies: "We can't say there is an epidemic. And there is no evidence of autism resulting from vaccines. Our position is that studies show that the effect of MMR vaccine and the increasing prevalence of autism are two separate issues." So far, the best evidence is that the number of children diagnosed with autism has increased to as many as 1 out of 200 mainly as a result of the recent definition of autism as a spectrum of diseases rather than a single one, Lord says. She cites a University of California at Davis study that found that "younger children were less likely to be retarded than the 17-year-olds diagnosed 10 years ago, indicating that diagnostic changes have increased the number of children classified as autistic." IQ also affects diagnosis. More children who used to be diagnosed as retarded or with other disorders may now be classified as autistic. Blaming the MMR vaccine for autism is scientifically unfounded, says Lord, who is convinced that most autism is genetic. "Concern about mercury in vaccines is relatively new. A parent-professional group noted that some of the symptoms of autistic children were similar to those caused by mercury poisoningsocial deficiency and poor conversational skillsand linked this to the fact that babies have been receiving increasingly large batteries of immunization, some of which, like MMR, contain a supposedly inert mercury compound, thimerosal, as a binding agent." Lord points out, however, that researchers have examined stool and urine samples and shown that "in children who have absorbed higher than normal amounts of mercury, the excess tends to be flushed out." She acknowledges however, that medical researchers still know little about how mercury or any other chemical may trigger chemical processes that could lead to neurological disorders. Lord does not belittle the concerns of parents or others who call attention to autism. "It's a modern crisis, if not an epidemic," she says. "There are far more with the condition needing services, it seems to me. We still lack a good way to track the disease since different definitions were used in the past from what we use now." Lord is involved in a CDC study that is tracking the syndrome state by state, child by child, and using a uniform definition of the disease spectrum. "Lots of evidence suggests that early intervention affects outcome," she says. "The children reached early are likely to have better social skills, be independent, than those diagnosed later. What's needed is intensive engagement that encourages them to respond and teaches them how to communicate."
Her interest began as an undergraduateLord first became interested in autism as an undergrad at UCLA. "I took a class with a professor who felt you could teach anybody anything," she says. "He figured that an army of undergraduate women could go out and make autistic kids normal. It didn't work, but I liked the kids I worked with a great deal. One didn't learn to talk. The other could speak well. That made me interested in language development." In 1975, during graduate school at Harvard, Lord got a job with a county mental health center in Vermont to gather data for her dissertation in psychology. "The schools didn't have to take autistic kids until they were 8 years old there," she says, "and after the teacher who was supposed to work with the kids didn't show up, I wound up with a class of 15 preschoolers, five of whom had autistic disorders. Some knew a lot about certain subjects but were unable to understand facial expressions. I admired their ability to make sense out of the world, so I interned at the autism center at North Carolina. I was struck by the great care provided by the parents of most of the children." In the mid1980s, when Lord began working with Michael Rutter, a professor of child psychiatry in London, and other leading psychiatrists and psychologists, the expert view was that autism was not genetic. Rutter was studying family genetics and "wanted to identify autistic children and distinguish them from children with other disorders," Lord says. She was looking at girls with autism to see if they were different from boys with autism. She didn't discover much difference "except the girls were more likely to be severely retarded than the boys, even though girls are four to 10 times less likely to be autistic." Evidence that autism was a genetic disorder gradually supplanted previous assumptions. "We've seen that the rate of recurrence in families is 1 out of 10," Lord says. "With identical twins, if one has it, it's a 90 percent chance the other does, too. And the fact that kids in the same family may exhibit different aspects of the spectrum indicates that defining autism as a spectrum is helpful." When the director of U-M's Institute for Human Adjustment (IHA), Prof. Robert L. Hatcher, and other scholars decided to establish an autism center to serve academic and community needs, they contacted Lord, who was then at the University of Chicago, for advice on the ideal features for such a center. "I suggested ways to organize it," Lord recalls, "and a bit later I was snowed in in Denver. Arnold Sameroff [U-M professor of psychology] was attending the same meeting and was weathering the storm in the same house. He worked on me the whole time to take the Michigan job. He was a good salesman. "For me, I wanted to be part of a center in a university that
was committed to research and education and included recognition of
the complex developmental problem autistics faced. I didn't want to
focus so much on abstract thought processes and theorizing about linguistic
processes as I had been at Chicago. And also, I'm a strong believer
in public education. If it hadn't been for an institution like UCLA,
I could never have accomplished what I have. I wanted to be part of
a clinical psychology program." What is autism? A complex developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects the functioning of the brain, autism affects the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions and leisure or play activities.—Autism Society of America, Bethesda, Maryland. (Call 1.800.3AUTISM or www.autism-society.org.)
The Asperger Syndrome is a mild form of autism. Those with this type may be highly intelligent and may excel at architecture, computer sciences, math and engineering but lack social skills. Some nickname it Silicon Vally Disease because Silicon Valley is saturated with people in those fields, which may explain the apparent explosion of autistic children in that area. Autistic traits can ofren be seen in parents, and in not necessarily "bad" traits - being careful, organized and neat. But these are pronounced in only a minority of parents. Most parent are quite normal. It can be quite difficult for parents to hear that they may have passed autism to their children.
An Update from Mason's Father >> U-M Autism and Communicative Disorders Center (UMACC) >> |
