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01/18/2002 By Scott LaFee, UNION-TRIBUNE STAFF WRITER Reprinted by permission of the author - Thanks to Ron James - Copyright 2002 Union Tribune Publishing Co Mental Blocked (part 1) Autism' and picture of the brain January 12, 2002 A generation ago, the most common medical advice given to parents of an autistic child was institutionalization. With no effective treatment or cure, alternatives were few. Those days are over. After years of being either ignored or misunderstood, autism is at last giving up its layered, tangled, contradictory secrets. Progress comes not a moment too soon. For reasons not at all clear, the rate of reported cases of autism is rising. Between the years 1987 and 1998, the latest figures available, the California Department of Developmental Services -- a statewide agency providing services and support to children and adults with developmental disabilities -- reported a 273 percent increase in diagnosed cases of autism, one of several diseases in a related spectrum that also includes Asperger's syndrome and Pervasive Development Disorder. California isn't unique. Studies in Illinois, Florida, England, Iceland and Japan have all recorded incidence rates of autism much higher than previously assumed, some worse than here. A decade ago, it was estimated that one child in 10,000 would become autistic; now the number has dropped to 1 in 500, and less. Autism activists have a word for what's happening: epidemic. But is it? Like almost everything else about autism, indisputable facts about the disease are scarce. At least some of the increase is likely due to improved techniques for diagnosing the disease and a greater social willingness to do so. But this fact is undeniably true: Autism is among the most tragic of neurological diseases. It typically strikes children between the ages of 18 and 36 months, erasing emergent personalities and cloaking what's left in an array of bizarre and impenetrable behaviors. Some autistic persons, for example, cannot wear clothing because it feels as if it were sewn with glass shards. Others sense light as a constant shriek or experience touch as color. Some seem to feel nothing at all. The world for them is muted in cerebral gauze, unnoticed and uninteresting. A child with "classic autism" may lack the ability to relate to others, including family members. He may not comprehend the meaning of a smile or that others see the world differently. A child with autism is trapped in a mental world of his own making and unmaking. He cannot explain what goes on inside his mind; we can only guess and gasp. "Not being able to speak was utter frustration," recalls Temple Grandin, a 44-year-old autistic woman, author and professor at Colorado State University. "If adults spoke directly to me, I could understand everything they said, but I could not get my words out ... My mother and teachers wondered why I screamed. Screaming was the only way I could communicate. Often I would logically think to myself, `I am going to scream now because I want to tell somebody I don't want to do something.' " Refrigerator mothers The history of autism research has until recently been a sorry one. It was not until 1943 that autism was first identified as a distinct neurological condition by Leo Kanner, a Johns Hopkins University psychiatrist. The cause of autism eluded Kanner, but a few years later, a Hungarian psychotherapist named Bruno Bettleheim claimed the source to be cold, unfeeling parents who drove their children into mental isolation. However dubious-sounding now, Bettleheim's conclusions were widely disseminated over the next two decades. Autism was lumped with other psychological maladies. Research languished. Bettleheim's notions eventually crumbled as advances in medical science and technology revealed more and more about how the human brain really works. But autism remains more enigmatic than not. Disability from the disease varies in the extreme. Some autistic persons require constant supervision and assistance, even permanent institutionalization. Others attend regular schools, find jobs, lead independent lives. Their affliction may not even be noticed by most people. The brain broken down Reduced to its essentials, the search for the cause of autism focuses upon two factors: genetics and the environment. Is autism passed down? Or is it provoked by something around us, a toxin or virus perhaps? There is little doubt genetics plays a part. Three out of four autistic people are male. A family with one child with autism has a 5 percent to 10 percent chance of having another child with the disease, while a family with no autistic children has only a 0.1-to-0.2 percent chance of having a child with autism. Most mainstream autism researchers believe the disease results from neurological problems that occur during prenatal development or in the first years of life when the newborn brain is still busily making new connections. Patricia Rodier, an embryologist at the University of Rochester, has published papers describing structural abnormalities in an autistic brain that suggest something untoward happens to the embryonic brain just weeks after conception, well before most women even know they are pregnant. Other researchers note that autistic brains have smaller memory, emotion and learning centers -- the amygdala, hippocampus and cerebellum -- than normal, a finding that suggests developmental disturbances in the third trimester of pregnancy or shortly after birth. An autistic brain does not seem to function like a normal brain. At UCSD, neuroscientist Eric Courchesne and colleagues have used deep-brain scans to show that the fusiform gyrus, a part of the brain involved with face recognition, is not active when autistic children are shown pictures of faces. Instead, a different part of the brain lights up. Other studies report apparent malfunctions in the parietal lobes, which contain important sensory centers, and the corpus callosum, the bundle of nerve fibers connecting the brain's two halves. Anatomical and functional abnormalities like these strongly suggest dysfunctional genes and misguided development. Some gene candidates have been identified -- a gene called WNT2 and another called HOXA1, both involved in early brain development and a third gene that codes for serotonin, a key protein used in neuron communications. It has been estimated that 10 or more genes may ultimately be implicated. Shot in the dark But bad genes are probably not the strict cause of autism -- at least not in all cases. Rather, certain genes and resulting brain development could predispose some children to autism if other factors come into play. The identity of these factors is a subject of considerable controversy and consternation. They range from chemicals in the water supply to antibiotics to drugs used to induce labor. Most notorious, though, is the widely disseminated belief that childhood vaccinations are the villain, specifically the measles/mumps/rubella or MMR injection, which is typically given to children shortly after the age of 1, a time when many parents say they first notice autistic behaviors. "The vast majority of people with young kids with autism believe it was caused by a vaccine or by an overexposure to vaccines," said Bernard Rimland, founder of the San Diego-based Autism Research Institute. According to Rimland and others, there are at least two scenarios in which vaccinations could lead to autism. In one, trimerosal -- a mercury-based preservative once widely used in some childhood vaccines -- causes neurological damage to infants who are eventually diagnosed as autistic. In the other scenario, the multitude of required vaccines, some containing weakened viruses, overwhelms the immature immune systems of vulnerable children, leading to brain infections by invasive, neuron-damaging microorganisms and chemicals. "Kids today are inoculated with 22 vaccines, compared to just three in 1940," said Rimland. "I'm not against vaccines, though I don't think they do nearly as much good as some of the drug companies and the medical establishment would suggest. But I do ask, how many vaccines can a kid take before his immune system breaks down?" Current concern over an autism-vaccine link erupted in 1998 after British research pointed to MMR as a potential culprit. But newer studies, responding to the uproar, have found no creditable evidence of a connection. In one study, researchers compared the number of Californian children diagnosed with autism between 1980 and 1994 with those who received the MMR vaccine during the same period. The vaccination rate, during this time, rose 14 percent while the autism rate grew many times fas ter. If there were a compelling link, the researchers concluded, the rates should have been much more similar. Because the exact cause of autism remains unknown, people understandably cast around for possible reasons and answers. Vaccines are easy targets, experts say. An ecdotal stories abound about an apparent causal link, but the connection seems more coincidental than scientific. "Who's to say there aren't things in the environment involved in autism," said B.J. Freeman, a professor of medical psychology at UCLA. "But one of them isn't MMR. If you look hard enough and know what to look for, you can see evidence of autistic symptoms in the first few months of life in 95 percent of cases." Treating autism There is no cure for autism, but its effects can be ameliorated. The key, according to Freeman, is identifying autistic children as soon as possible -- and acting. In a small room, a young woman sits on the floor surrounded by toys and a small boy named Nikko. She picks up a toy -- a plastic train -- and rolls it across a table, hooting. Nico pays no attention at first, but then grabs for the train. The woman pullsit away, insisting first that Nikko tell her what it's called. "What is this, Nikko? It's a train. Say train." Nikko frowns, refuses to speak. Finally, he mutters something that sounds like train, grabs the toy and happily begins rolling it himself, back and forth. From behind a mirrored window, unseen by Nikko and the woman, Laura Schreibman watches the exchange. Beside her, two graduate students film the action and jot down times and behaviors. Schreibman runs UCSD's Autism Research Laboratory, an ongoing investigation into various behavioral methods being used and promoted as treatments for autistic children like Nikko. As all parents of autistic children learn, there is no shortage of alleged autism remedies. Some advocate dietary changes, such as boosting vitamin intake or eliminating certain food proteins like gluten from grains and casein from dairy products. Some require treatments that allegedly purge the body of heavy metals and other toxins. Others employ drugs, from medicines used to combat depression, convulsions and hyperactivity to more controversial concoctions like secretin, a hormone involved in digestion. Supporters of these therapies often cite examples of autistic children who have seemingly stepped back from the mental brink and rejoined their families, friends and the external world. "Very few people talk about a cure, but I've seen plenty of autistic kids treated who are now indistinguishable from normal kids," said Rimland of the Autism Research Institute and an advocate of vitamin therapy. But others are less persuaded. "If a parent tells me that they want to change their autistic child's diet, give them extra vitamins, and I don't see any specific medical harm, then who am I to tell them not to do that?" said Schreibman. "But the only treatments empirically demonstrated to be effective for autism are based on behavior. They're not a cure, but nothing else has been documented to work, at least not scientifically." Applied behavioral analysis (ABA) comes in many forms. No single method works for every autistic child. Some, like Nico, respond better than others. "Nico is motivated by toys," said Schreibman. "A lot of autistic kids aren't. Toys don't interest them, and that makes connecting with them that much harder." Connecting is a key to behavior training. While typical children absorb social lessons around them almost automatically, autistic children do not. A normal kindergartener, for example, might see his peers line up for class and conclude he's supposed to do so as well. An autistic child might not even notice there were other children nearby. Behavior training is what it sounds like. Therapists use visual and verbal cues to teach autistic children what to do and how to behave in different, specific circumstances. Sometimes this is done with pictures, food, mimicry or simply repeating a behavior until the child catches on. The setting can be limited to a child and therapist or parent, or it can take place in a more communal setting, such as the Children's Toddler School, a preschool run by Children's Hospital that enrolls and mixes together autistic and developmentally normal children. "Other children are often the best teachers," said Aubyn Stahmer, clinical research director at the school. A future after all When parents first arrive at UCSD's autism lab, they are asked to imagine where their autistic child will be in 20 years. Responses tend to be optimistic. "Most parents say college or married," said Schreibman. But these expectations usually decline as parents become more realistic about what science and medicine can do. Schreibman offers optimism, but not false hope. Yet that still represents a profound change from the past. A generation ago, there seemed no hope at all. Autism was a mysterious scourge, an unidentified robber of children's minds and personalities. Last year, researchers at the National Institutes of Health reported that they had found elevated levels of certain brain proteins in newborns who later became autistic. The finding represents the real possibility that biological markers might exist that could eventually help doctors identify autism before symptoms become catastrophic. "With early diagnosis, within the first few years of life, and effective treatment, the natural progression of autism is improvement," said UCLA's Freeman. "That's not a grim prognosis." Rather, it's a start. Facing Autism (part 2)By Scott LaFee, UNION-TRIBUNE STAFF WRITER Reprinted by permission of the author - Thanks to Ron James - Copyright 2002 Union Tribune Publishing Co.  HOWARD LIPIN / Union-Tribune Unlike some autistic children, Stephen Adams enjoys toys, which provides his parents and teachers with another means of connecting with him. "Peas," Stephen, then 16 months old, would cheerfully reply. One morning Stephen' s mother asked and he didn' t answer. "He looked dumbfounded, like he didn' t know what I was talking about," Adams recalled. "He didn' t say peas -please - again until he was 4." Within months of no longer saying please, Stephen didn' t say anything at all. His language skills, which had been typical for a toddler his age, vanished. Then Stephen did, too. "He stopped smiling and laughing," said Adams. "He just sat there. He wasn' t the boy I knew. I didn' t know what was happening. I thought he might be acting out because he missed his father, who' s in the Navy and sometimes has to go to sea for months at a time." But that wasn' t the problem. Stephen, it would turn out, is autistic. In many ways, autism is about lost children. It is a disease -- a spectrum of neurological disorders, really -- that are typically diagnosed around the age of 2. In cases such as Stephen' s, apparently normal children suddenly are not. Early language and social skills fade, then disappear. Inexplicable, sometimes dangerous, behaviors emerge. Parents watch helplessly as their child transforms into somebody they do not recognize -- and who often does not recognize them. Victoria Ikerd remembers when her son, Jacob Cogar, changed. At the time, Ikerd already was caring for a 3-year-old autistic daughter, Savine. Like Stephen, Savine Cogar had seemed a typical child until she was 1-1/2 years old. That' s when she stopped saying words such as "hi" and "bye" and "mama." "I don' t think I realized it immediately," said Ikerd. "It' s not like you expect your child to just not talk one day." Savine began acting odd. She giggled for no reason. She avoided eye contact. She couldn' t tolerate people singing. Ikerd feared Jacob was similarly fated. At 10 months, she had him assessed by doctors. He checked out fine. At 15 months, he still seemed OK. Jacob wasn' t walking yet, but Ikerd was not overly concerned. "But that' s when he started falling away from me. He began pacing and stomping in patterns, pressing buttons on and off. He wouldn' t play with toys. He wasn' t a little boy who wanted to play with you. He was calm, very easy to take care of, but he wasn' t really interacting with us anymore. We didn' t seem to be there." Growing numbers The cause or causes of autism are not known, but the disease appears to be on the rise -- everywhere. In California, there has been a 273 percent jump in diagnosed cases between 1987 and 1998. Studies show similar or greater increases in places such as Michigan, Florida, England and Japan. Scientists once estimated autism struck one child in 10,000; now the ratio is up to one in 500, perhaps higher. No one knows why. Medical science has more questions than answers, but this much is certain: When autism strikes a family, it changes more than the child. The divorce rate in families with autistic children hovers at 75 percent. Parents can be wracked by guilt, frustration, anger, denial and, always, questions about the future. They wonder: What sort of life will my child have? What will he do when we are gone? A generation ago, the answer was often bleak and depressing. Autism was scarcely recognized as a disease then, and even more poorly understood. There were no effective treatments. Parents were often unable to meet their child' s needs. The fate of many autistic children was life in a psychiatric institutions. It' s easier now. In the past decade, numerous autism organizations and support groups have come into existence, among them the Doug Flutie Jr. Foundation for Autism, created by San Diego Chargers quarterback Doug Flutie after his son, now 11, was born with the disease. Public schools have responded -in varying degrees -to the rise in autistic students as well. San Diego city schools, for example, runs a well-regarded, if somewhat overtaxed, program of special classes and services. "In the early 1990s, we had maybe 30 students in the district identified as autistic," said Bobbi Kohrt, an autism specialist. "Now there are maybe 500, 600." Such programs help, though parents complain that they must sometimes fight for services. "The hardest part of having an autistic child is first hearing that you do and not knowing what it means," said Shirley Fett, mother of two autistic boys. "But once you get over that initial shock and grieving, the hardest thing becomes getting what you think your kids need. It' s a constant effort." The effort is usually worth it. There is no cure for autism, but some treatments are proving effective, particularly if started as early as possible and based on behavior modification. These programs usually focus on teaching behaviors through activities involving play-acting, mimicry and visual aids. There is an emphasis on developing or reviving communication skills. Stephen Adams, now 9 years old, has regained much of his language ability, thanks in part to intense speech therapy sessions at UCSD and special education programs in San Diego and elsewhere. "We knew Stephen could talk, but he had lost his voice," said his mother. "Now it' s back and getting stronger. He has a personality. He will look you in the eye again. He' ll shake your hand." Savine and Jacob also have improved with behavior intervention. Savine chats gaily with a visitor to her house about the Barbie she received at Christmas; Jacob spots a camera and grins. Help wanted If frustration exists in every autistic family so, too, does hope, albeit tinged by desperation. Most autistic parents say they will try any purported treatment and remedy, from dietary changes to cleansing the body of certain toxins. "You can get frantic at times," said Fett. "What do I do? How much can I do? Having a child with autism is very labor-intensive, time-consuming and expensive. I think we' ve tried everything, a lot of it without effect. Some parents get burned out but, for most of us, it just becomes a way of life. I make phone calls every day about my boys, setting up appointments, dealing with issues. We all reach a level we can handle." No parent knows how much he or she can handle until reality strikes. It first struck Donna Rasmussen when she noticed her son, Jake, at 9 months old, was not like his 2-year-old sister. "He would watch the Disney movie ' Pinocchio' over and over, laughing and giggling and flapping his arms," Rasmussen said. "He loved to watch the credits, and when they were over, he would scream until you started the movie again." At a year, Jake said "mama" twice, "tasty" once, and then stopped speaking. Jake didn' t play with toys, but he was mesmerized by chalk, which he carried everywhere, including into bed and the bathtub. Everything seemed an ordeal and complication. Jake would eat crunchy apples, but not Jell-O or ice cream. He hated shopping trips to Ralphs, but tolerated Vons. Returning home by car required following a particular route. Jake threw "about 70 tantrums a day," his mother sighed. Rasmussen struggled to get Jake diagnosed. "Nobody wanted to talk about autism," she said. It was just as bad with family and friends. Some became uncomfortable around Jake; some distanced themselves. Jake' s grandparents dismissed his behavior as merely strange. "They' re still in denial," said Rasmussen. "They won' t talk about the disease. It' s like they' re afraid they' ll offend somebody." At 2-1/2 years old, Jake was diagnosed with autism and behavioral treatments begun. Rasmussen does much of it herself, teaching Jake, now 6, with pictures and much repetition. Life is better -- for everyone. "Jake' s much improved," Rasmussen said. He' s in first grade. He' s talking again. He reads and loves computer games. "Autistic kids aren' t stupid. Many have normal intelligence. They just don' t have a way to express themselves, to let go of their thoughts and feelings." Donna Rasmussen dreams the dreams of mothers and fathers everywhere, that her children will have long, happy and productive lives. At one time, she feared Jake would never learn to even eat with a fork, but now Rasmussen thinks he might attend college some day, find a job, create an independent life of his own. But there is doubt, too. For most autistic families, uncertainty is a permanent shackle. Asked when she knew things with Jake were going to be OK, Rasmussen paused, then said: "Maybe the day after tomorrow." Parents and researchers at odds over treatmentBy Scott LaFee, UNION-TRIBUNE STAFF WRITER Reprinted by permission of the author - Thanks to Ron James - Copyright 2002 Union Tribune Publishing Co. The scene is a session at the Autism Society of America's annual conference, this one held last July at the Town & Country's convention center in Mission Valley. The meeting room is crowded, mostly with parents of autistic children, some of whom play quietly between the chairs. Laura Schreibman, a professor of psychology and director of UCSD's Autism Research Laboratory, is talking about scientific progress in treating autism. "And since we don't really have any answers," Schreibman tells her audience at one point, "there's a vacuum that gets filled by all manner of errant information or phony treatments." Take vaccines. Many people believe that childhood vaccinations like the measles-mumps-rubella injection are linked to autism, that there is some sort of cause-and-effect. "But no large scientific study supports that contention. There is just no creditable proof," Schreibman says. Not far from Schreibman, in the Golden Ballroom, Bernard Rimland, co-founder of the ASA and later the Autism Research Institute (ARI) in San Diego, is talking too, but with a notably different message. He thinks vaccines are at least partly culpable for autism and that doctors cannot necessarily be trusted. "You simply cannot believe what the medical establishment tells you," Rimland says. The crowd, also primarily parents and autism activists, roars in agreement. Welcome to the war against autism, a struggle rife with emotion and tension, a fight scarred by suspicion and frustration, desperation and confusion. You can blame a lot of this on the disease itself. Autism is a spectrum of neurological conditions, from so-called "classic autism" to Pervasive Developmental Dis order-Not Otherwise Specified or PDD-NOS. Effective treatments are limited and evolving. There is no cure. "I would say we are still in the dark ages in terms of basic science, of understanding autism," said David Amaral, director of research at the MIND Institute in Sacramento. Autism can be devastating, to the victim and his or her family. It most notoriously strikes children around the age of 2, stripping away language and socialization skills, reducing them to incommunicable, inexplicable ghosts of themselves. Most parents will try almost anything to get their child back "They grab onto anything that gives them hope," said Bobbi Kohrt, an autism specialist with San Diego City Schools. Unfortunately, the history of autism treatment is fraught with "interventions du jour, things like metronome therapy and swimming with dolphins," said Kohrt. Such alternative methods frequently tout success stories of autistic children effectively treated, even cured. Some are even supported by research, though it may be incomplete or suspect. Mainstream medicine struggles to compete. Real scientific progress is slow, incremental and frustrating. It's rife with caveats and limitations. "Parents come to us for answers," said UCSD's Schreibman, "and we don't have them. They come with what sounds to them like a possible solution -- a change in diet or some new hormonal treatment that they've heard about on the Internet -- and we tell them that there's no evidence it works. Or that it's something we've never heard of. "They say OK, if that isn't the answer, what is? All we can say is we don't know, at least not yet. Things can get very acrimonious and unpleasant." Tensions are perhaps unavoidable. Parents of autistic children are desperate for help, yet many complain they cannot easily find it in the medical profession. "It was hard just getting a diagnosis of autism," said one mother who asked not to be identified. "My pediatrician kept telling me to wait, that my son, who was 18 months and not talking, was just developing slower than other children. He said boys were like that." In the past, pediatricians were often reluctant to identify a child as autistic. Until quite recently, most pediatricians had little or no formal training in identifying the disease. And some feared offering such a diagnosis. It was stigmatic, and it didn't necessarily mean the child would receive effective treatment. Things have improved. A diagnosis of autism is no longer so onerous. Indeed, it is required before most children can begin to receive specialized services. But conflicts between parents and doctors persist, in part because the former sometimes suspect the latter do not share the same goals. "Most people believe doctors have their welfare near the top of their priority list," said autism activist Rimland. "That's not necessarily true. There are other factors, such as their prestige or place in the medical community if they don't follow mainstream medical procedures." Rimland is not new to the struggle. In the 1950s, spurred by the birth of his own autistic son, the former Navy psychologist began investigating the disease. In 1964, he wrote a book suggesting autism stemmed from cognitive malfunction. The idea was revolutionary, and substantially changed the path of autism science and medicine. Rimland continues to push for change, collecting data from parents of autistic children which, he says, show most mainstream medical practices are ineffective or worse. In the case of vaccines and autism, Rimland contends there's also the issue of money. "Remember what's at stake: Billions of dollars of liability for the drug companies plus the credibility of the medical establishment, both of which have spent decades bragging about the safety and validity of these vaccines." Such words, Schreibman said, don't help. "There's an incredible amount of distrust and it really bothers me," she said. "It's crazy. Some parents think (doctors and scientists) have the answer and we're not telling them. But why would that be the case?" Back at the ASA conference, UCSD researcher Karen Pierce is describing some of the latest neurobiological findings on autism, again to an audience comprised mostly of parents. The parents listen respectfully, but there is an air of skepticism. They don't doubt the work or its integrity, but they still wonder about stories they have heard or read regarding potential cures. "One of the challenges for parents is too much information," said Gregory Fletcher, father of an autistic son. "There's a lot of stuff on the Internet." Pierce is diplomatic but clear: These are mostly just stories, she says. What is important, in the long run, is to evaluate the science and how understanding of autism has been advanced. A few parents in the audience are not wholly persuaded. They want to know why scientists and doctors don't seem to be pursuing every possible lead. Don't they care? Eric Courchesne, a colleague of Pierce's and a leading autism researcher, rises. He had been sitting among the parents, listening. "I just got back from a meeting of autism researchers," he says, "and I can tell you that we all care. You can't do this work and not care." The audience seems to accept this. A few parents shake Courchesne's hand. Many corner him later to ask more questions. Courchesne answers, but it's not an entirely satisfying experience for anyone. The science of autism is still mostly preoccupied by questions, blank spaces in search of answers. Until they are filled, there will be a sort of emptiness, one filled all too often by doubt and frustration |