Autism: Enigma and Stigma By Dale Short Picture yourself visiting a strange country, where the rules for

normal behavior are all different than they are back home, but nobody will explain to you exactly how or why. The people around you routinely break into laughter, or collapse in sobs, for no reason you can determine. Except for these outbursts, their faces are as impassive as masks. When someone approaches you, you can never predict whether theyre about to deliver an angry lecture or give you a hug. And just when you think youve started to detect some pattern to this ongoing madness, the landscape suddenly erupts into bright, flashing lights or high-pitched sounds that pierce your nervous system like a dentists drillso thoroughly breaking your concentration that you have to begin solving the mystery again from scratch. The strange country is our everyday world, as it appears to someone with the developmental disorder known as autism. Probably the most articulate first-person voice on the subject is author and mechanical engineer Temple Grandin, whose books such as Thinking in Pictures and Emergence: Labeled Autistic recreate so vividly the alternative universe experienced by a person with autism that neurologist Oliver Sacks has characterized her voyage through daily life as the equivalent of an anthropologist on Mars. The condition was first described and given a name in 1943. But no one knows how far back autism stretches into humanitys past, because the same behavior was previously assumed to be some combination of deafness and mental retardation. Though the disorder is apparently old, our current understanding of itincluding vague outlines of how the external world must appear to someone who suffers from autismis very new. Experts originally believed the deficiency was not biological at all, but instead resulted from emotionally distant parenting: in particular a syndrome one of them named (memorably, if inaccurately) refrigerator mother. Today, researchers agree that autisms severe disruption of the brains neurological wiring takes place long before birth, and is at least partly genetic. The one other fact that virtually all researchers agree on: the number of autism diagnoses has skyrocketed within the past generation, not just in the United States but around the world. One study says the increase is 400 percent, another puts the figure at 700 percent. Still others say its somewhere in between. Though theories abound, the cause of the epidemic remains a mystery. * * *

I can remember the frustration of not being able to talk at age three. This caused me to throw many a tantrum. I could understand what people said to me, but I could not get

my words out. It was like a big stutter. I remember thinking logically to myself that I would have to scream because I had no other way to communicate. Temple Grandin Seen from the outside, children with autism show a number of obvious differences in their behavior, beginning as early as the age of two, or even younger. Theyre not only slow to develop language, theyre slow to learn what specialists describe as meaningful gestures, such as waving to greet someone or pointing at an object to get an adults attention. Likewise, they often fail to develop joint regard, a term for the ability to pay attention to an object or activity at the request of someone else. The failure to smile, laugh, or make eye contact with the people around them is also common. One result of this social isolation is the tendency for children with autism to go into emotional meltdown in crowded settings such as busy stores or restaurants. Some parents call this the Wal-Mart test; Latamia White, M.D., assistant professor of child and adolescent psychiatry, refers to it as the Chuck E. Cheese test: One way I try to help parents understand whats going in their childs mind is to think about all the sensory filters that weve developed as adults, White says. When we sit down to watch television, for instance, were able to largely block out other things that are going on around us. People with autism dont have those same filters. Their awareness of sights and sounds is often very heightened. What appears to us as a normal living room, they might experience as being in a domed stadium with loud noises reverberating everywhere. When they go to a public place thats unusually loud or busy, their senses just overload. Walkways and tunnels are often a problem. They become dizzy, or they panic because they feel confined. In one of the many paradoxes of autism, the same children who violently pull away from such interactions as hugging, cuddling, or patting, can also engage obsessively in what autism experts call stimming, or self-stimulating behaviors such as flapping their hands or arms, wiggling their toes, and even slapping or gouging at their own faces and bodies, sometimes to the point of injury. And while the other children around them play with toys in ways that behavior experts call functionalusing tiny cars or trucks to haul objects or to race one another, a child with autism may spend hours arranging the same toys in an elaborate pattern on the floor, then throwing a tantrum if someone accidentally nudges one of the items even a millimeter out of place. * * *

Some people with autism are like fearful animals in a world full of dangerous predators. They live in a constant state of fear, worrying about changes in routine and becoming upset if objects in their environment are moved. This fear of change may be an activation of ancient anti-predator mechanisms that are blocked or masked in most other people... Temple Grandin

Dramatic breakthroughs in real-time brain imaging technology during just the past several years are shedding lightsometimes literallyon the neurological mechanisms of disorders that researchers were once only able to study after the fact, through brain autopsies. But despite those improvements we have only a sketchy understanding, so far, of exactly what goes wrong in the complex constellation of symptoms that constitute autism and related conditions, according to Alan Percy M.D., professor of pediatric neurology: Were not down to the level of sensitivity yet to confirm the cell-to-cell connections, though were approaching that, says Percy. And when it comes to structural imaging were in a bit of a quandary because autism isnt a singular disorder with a singular cause. Our understanding of it is sort of like the fable about the blind man describing the elephant. What part you look at determines what you see. Studies of autistic brains done through traditional autopsies show a normal number of nerve cells in the affected parts of the brain, Percy says, but the projections known as dendrites are too close togethersuggesting that they failed to mature on a schedule that would have allowed them to make normal synaptic connections with surrounding neurons. The main message we get from these findings is that the lack of communication among cells affects all areas of the forebrain, or what we refer to as the thinking part of the brain that deals with socialization and language. By contrast, the motor functions, though they can be awkward, are relatively unaffected. That dichotomy often plays out in the stories of such high functioning people with autism as Temple Grandin, who are highly uncomfortable in social settings but, when working in isolation, can produce brilliant mechanical designs, illustrations, music, or computer programs. In fact, professions such as computer programming and software design seem to attract a high percentage of individuals with a disorder known as Aspergers syndrome, one of a number of related conditions on the autism spectrum. The subject of autism made a major leap into the popular imagination with actor Dustin Hoffmans Oscarwinning portrayal of a middle-aged man with Aspergers in the popular film Rain Man. Hoffmans character Raymond Babbitt is socially inept, and so obsessed with the minutiae of his daily routine that he becomes upset when the maple syrup container is not already on the table when the pancakes arrive, but can quote voluminous statistics on subjects ranging from baseball scores to airline safety, and can compute mathematical square roots with the speed and precision of a scientific calculator. Hoffmans appealing depiction of Raymonds difficult, offbeat personality has been a double-edged sword in increasing autism awareness, Latamia White says, because the characters particular disorder is relatively rare and most children with autism will not become mathematical or artistic savants. Still, the basic lesson is a useful one in devising therapies and services for people with autism, according to White: Despite all the problem behaviors, children can be extremely gifted in other areas. Our job is to make the most of the things they are good

at, such as organizing and retrieving information in their memories, and play up those strengths. All of us, whether we have autism or not, are good at some skills and not so good at others, so the process is basically the samelearning to compensate, to make the best of the abilities we have. But dealing with that complicated mixture of traits on a daily basis can be a devastating challenge for a family, according to Jennifer Muller, director of the Autism Society of Alabama. Ironically, says Muller, the problems are often made worse by the fact that autism, unlike such disorders as Downs syndrome, has no outward physical characteristics serving as a signal to strangers that something is wrong: If a youngster has a meltdown in a grocery store, for instance, other customers might glare at the parents like, Why cant you control your child? The Autism Society of America has prepared a small card that parents can give out to strangers, explaining subtly that its not a discipline problem, so please dont stare. The card also lists some of the symptoms, how to recognize a child with autism, so its a good educational tool. Even with the increased awareness about autism, unfortunately theres still a stigma surrounding the disorder, and its definitely a problem for families. Even in the best of circumstances, your life becomes very different. Youre constantly adapting, doing what you have to do just to survive, and the amount of energy that kind of effort requires is hard to imagine, if you havent been there.