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The
many faces of AUTISM
Part one Modified: Thursday, Jul 12th, 2007 BY: Joe Hansen On a bright July day in Dorena, Jackie Gwaltney sits inside and wonders what could possibly be going through the mind of her 18-year old son Joey. He's worked up today, and she's not sure why. Joey can't walk, but he does hop around excitedly, gesturing and making wordless sounds, trying to get a point across. He seems upset, perhaps because there's a stranger in the house. Or maybe he's just thirsty. "It's hard, because you want to give him what he wants and needs, but there's no way for him to communicate those things," says Jackie, sounding tired. Joey has autism, and while the word literally means "alone" (from the Greek autos meaning "self" and ismos, a suffix of action or state of being), he's actually part of an American demographic that numbers as high as 1.5 million people, according to Center for Disease Control estimates. According to figures released by the CDC in February, 1-in-150 people born in the United States have Autism Spectrum Disorder (ASD). For boys in Lane County, that figure is 1-in-94. (Up to date numbers are actually 1 in 91 overall in Lane County.) And while reliable numbers specific to Cottage Grove simply don't exist, there is reason to believe that the statistics for southern Lane County are even higher than elsewhere : According to South Lane School District Special Services Director Chris Parra, 10.4 percent of her special education students are there because they have ASD. That compares to 8.1 percent for Lane County and 7.1 percent for the state of Oregon. It remains to be seen whether or not these numbers are really indicative of an increased rate of occurrence. It could be just that autism is now diagnosed in the past, people with autism were labeled as mentally retarded, schizophrenic or just plain eccentric. The causes for autism are as yet unclear, but theories abound. Researchers say a lot of evidence supports a genetic link. It also appears, however, that although some children are born with susceptibility to the disorder, it is brought on by environmental factors like toxins, heavy metals or even elements of vaccines. Joey is what scientists and researchers call "classically" autistic . He sits on the ground, rocks back and forth, fidgets and flaps his hands. He's aware of his surroundings , and while he may not seem particularly in tune with what's going on around him, Joey is incredibly sensitive to even minor changes in his routine. He doesn't speak, communicating instead with gestures , grunts and body language. Jackie Gwaltney's other son, Mario, 16, walks into the living room, sits down, says a few words, and retreats back to his bedroom and the computer that awaits him there. Mario is also severely autistic, but the two boys' cases are like night and day. Mario walks fast, talks even faster, and looks strangers in the eye briefly . He's terribly shy, preferring to explore distant locales via Google Earth than carry on a conversation with someone in the same room. Joey and Mario illustrate a fundamental truth about ASD: there is no such thing as a typical case of autism. Every person with autism lives in a world that is entirely their own. While it is probably impossible for a “neuro-typical” person to imagine the world of an autistic person, there are some commonly described characteristics. It’s a world where sensory information like sights and sounds comes in an unstoppable, unmitigated flood of noise, light, smell and touch. Background information can’t be filtered, so the din of a busy street makes it impossible to focus on the person in front of you. It’s also a world where one situation doesn’t necessarily relate to the next, and behavioral generalization is not possible. Someone with autism might, with difficulty, learn a set of rules about how to act at a party. But they wouldn’t necessarily extend those appropriate behaviors to a movie theatre, or understand why you can talk loudly at a party but not in the theatre. For this reason, people with autism often engage in “scrolling,” where they search through a list of appropriate learned behaviors until a suitable one is found. Often, the answer comes hours or days after the fact. Some people with ASD say they can’t tell where their body ends and the rest of the universe begins, giving a whole new meaning to the idea of invading someone’s space. Emotions and needs exist in the autistic world, but there’s no good way to communicate them. Often this inability to communicate leads to frustration, which in turn leads to violence or minor acts of anarchy like throwing things or fits in the grocery store. Jackie Gwaltney is well acquainted with such bouts of rebellion, as both Joey and Mario have the occasional meltdown. But the things that set Joey off won’t necessarily set Mario off, and vice versa. For example, Joey loves going out on the family boat; he finds it soothing. For Mario, on the other hand, such aquatic adventures are terrifying. Each case of autism is different, which is precisely why medical professionals now describe it as a spectrum of disorders. That entire spectrum exists right here in Cottage Grove. Following are three examples of childhood autism in Cottage Grove that show, as much as anything else, how different autism can be for individuals and their families who deal with it. THREE STORIES OF CHILDHOOD AUTISM IN COTTAGE GROVE Kathy and Henry Beving first noticed their son, Bennie, was a little bit different when he began reading at the age of two. He wasn’t just reading comic books or children’s literature, either; by the time he was three, Bennie was reeling off the names of dinosaurs. Now, at age 16, Bennie states openly that he wants to be a paleoherpetologist (the study of ancient reptiles and amphibians). But Bennie has a lot of things to overcome. He has Asperger’s Syndrome, a disorder at the high-functioning end of the autism spectrum. Calling it a mild form of autism would be a big mistake, however. Bennie faces serious sensory challenges: loud noises send him running from the room, he has trouble dealing with bright lights and he considers the smell and taste of most food absolutely toxic. In fact, Bennie describes many foods as “poison.” He struggles with social situations as well. Ask Bennie what it’s like to have Asperger’s, and he’ll tell you in his frank, scientific way. “It’s just a different way of thinking. It’s like if your brain is a filing cabinet. Some things I just put in different areas than other people.” Bennie also speaks openly and matter-of-factly about his sensory and social issues. “I don’t like being around a lot of people. It freaks me out,” he says. Kathy and Henry love their son just the way he is, and they’ve gone to great lengths to give him everything he needs. Bennie was home-schooled until the second grade, but when he went to public school in the third grade he started acting strange. When the class bells would go off, he’d hide under his desk. Lunch in the cafeteria was a nightmare. He wasn’t making friends. “For a long time, the best we could come up with was that we had a child that was so smart, he just wasn’t going to get along with other kids,” says Kathy, adding that going to school took a daily toll on Bennie. “It got to the point that the stress of having to get up and go to school actually made him vomit.” It was clear something was wrong, and eventually Bennie was diagnosed with Asperger’s Syndrome. The diagnosis changed their lives. “Instead of being out in the woods and not knowing anything, now we knew what it was and how we could get him what he needed,” says Henry. What Bennie needs is individual treatment and attention. He has a specific diet of things he’ll eat, and his food must be gluten-free. Bennie takes special classes at school to help deal with social problems. While school is still difficult for Bennie, he’s now doing better at age 15, attending Cottage Grove High School full time, albeit with a lot of leeway. It’s clear that Bennie has a brilliant scientific mind. But in a world where social interaction is crucial, Henry and Kathy worry about his future. “We’re not looking for a cure, we’re just looking for a way for him to be able to function and live in our world,” says Henry. “I wouldn’t say that I’m glad Bennie is autistic, but I love him, and I wouldn’t want to change him.” Lillie Martin was driving at 55 miles per hour when her 8-year-old son Jordan tried to open the car door and get out. Terrified, Lillie slammed on the brakes and pulled over to the side of the road. She asked Jordan why he’d tried to do that, and he had no answer. He didn’t seem to understand that exiting a moving vehicle was dangerous. Jordan is on the high-functioning end of the autistic spectrum, but not within the realm of Asperger’s Syndrome. The Martins have had such difficulties in controlling Jordan that they are beginning to think it might be in his best interests for him to spend at least part of his time away from home. This has been a heartbreaking realization for Lillie and Ernie. Lillie frequently has taken Jordan to the SAFE House, an intervention facility in Lane County. Lillie cries for hours every time she has to let go of her son. Jordan knows he’s autistic. While playing with the family dog, Jasper, Jordan looked up and asked: “Do you think Jasper knows I’m autistic?” Lillie wasn’t sure what to say. The story of Jordan, and his parents Lillie and Ernie, is one of frequent frustration and setbacks. Jordan is often hyperactive and disobedient. He can’t concentrate in school. He has frequent meltdowns, brought on by any deviation from the stated plan. “He has a script in his mind about what’s going to happen, like a movie. Well, maybe mom needs to stop and get gas, that makes him blow up because the script is interrupted,” says Lillie. “We just keep asking, is this the disease, or is this a defiant child?” The Martins have gone through a whole host of doctors over the years. From the beginning the doctors’ strategy has seemingly been one of heavy medication, throwing a cocktail of pharmaceuticals at Jordan to see what works. At age 2 1/2, Jordan was prescribed Prozac, although Lillie and Ernie refused to give it to him. He’s also been given medication for schizophrenia and bipolar disorders, serious drugs like Abilify. By the age of eight, Jordan was prescribed Lithium. At one point, he was taking 1000 mg of Seroquel, a powerful anti-schizophrenic drug, and he started to hallucinate, thinking his body was covered with bugs. The pharmacist told Lillie and Ernie that if it were his kid, he wouldn’t give him that kind of dose of that drug. The Martins took him off the drug immediately. Experimental medication is a common story for people with autism. Doctors prescribe drugs until they find something that works, but medication can have unexpected effects for people with ASD. Bipolar and schizophrenia medications can have the opposite of the desired effect. Now Jordan takes Ritalin, which seems to help him concentrate. Simultaneously, the treatments that really seem to help Jordan aren’t covered by standard health care: mental health visits have a cap, naturopathy, massage therapy, even acupuncture have a positive effect but often aren’t covered. Medications are a financial drain too. And all the while, Jordan’s behavior at home hasn’t improved. Now his grandparents are getting certified to take care of him for a portion of each week. He seems to do better at their house. Lillie and Ernie love their son very much. But they are coming to the harsh realization that he may need some things that they cannot give him. “I’ve made mistakes as a parent, but I’ve never stopped trying to do what’s best for Jordan. Even if that means the best thing for him is to be somewhere else,” says Ernie. Tara Salusso and her son — who we'll call Jonathan — began an odyssey that has taken them from Montana to California and eventually to Oregon and Cottage Grove in search of the right place to live. Tara has known something was different about Jonathan since he started beating himself on the head when he would breast-feed. But finding out exactly why he’s different has been a painful journey. When the pair lived in Montana, doctors told Tara that Jonathan was everything from brain-damaged to bipolar. Jonathan was put on bipolar medication, but he said it made him feel like his “brain was frying.” He was then given stimulants like Ritalin, but those had equally troubling effects. Eventually Tara was told that Jonathan had Opositional Defiance Disorder and that he would eventually have to be institutionalized. “At that point I knew we weren’t staying in Montana,” says Tara. Tara and Jonathan went to California and eventually got the correct diagnosis: severe autism. They eventually made their way up to Cottage Grove in 2003 and settled, because of the quiet atmosphere and services for the developmentally disabled in the school district. Jonathan is now 10 years old. He exhibits many classic traits of autism. He beats himself on the head, knocks his head on the wall and engages in compulsive activities, constantly lining things up in rows. He can’t stand in lines. When he does, if another line of people comes by, he feels compelled to reach out and hit every seventh person. Once, Jonathan tried to push Tara into oncoming traffic, not realizing it was dangerous. His answer to what it’s like to be autistic is quite zen: “I don’t know what it’s like to have autism, because I don’t know what it’s like not to have autism,” he says, speaking slowly. By now, Tara has a better handle on how to give Jonathan what he needs, and his strengths are starting to come out. He’s a clever inventor, and he sees things other people don’t. “He has such an amazing brain, he sees the world differently, and that lets me see the world differently,” she says. “I have a feeling he’s going to figure something out that’s going to change the world. I often feel like I’m letting him down because I don’t have the mental capacity to follow him. I wouldn’t trade him for a normal child if I could.” These are just a few stories of the autism spectrum in Cottage Grove. There are many more. Numerous families have made their way to Lane County and Cottage Grove because there are services here for those dealing with autism. In some parts of the country, services are severely lacking. Part II of this series will deal with some of the more technical
aspects of autism: the science behind the causes of the disorder,
the treatment methods and what hope there is for the future.
Part II will also feature some stories about adults living with
autism once they leave the structured life available through
the public school system.
“I don’t immediately realize it when I’m acting strange, so I’ve asked for constant feedback,” she says. “I’m always assessing and learning about how the world operates, compared to how my autistic brain wants it to work.” Mary-Minn has been involved in a life-long effort to fit into society, stay employed and function. She’s managed, through intellectual prowess and discipline — not to mention a little help from her friends — to identify her autistic behaviors and, with varying degrees of success, curb them. Now Mary-Minn is an author, art teacher and a partner in a happy marriage. Mary-Minn has turned many things that “neuro-typical” people take for granted into intellectual processes of discovery. One of the hallmarks of Autism Spectrum Disorder (ASD) is the inability to judge social reactions and situations when it comes to other people. So Mary-Minn has taught herself to pay attention to such things and take them seriously. She’s adopted a scientific approach to empathy. What Mary-Minn has accomplished on her own over the course of her life is precisely what autism experts attempt in classrooms and clinics across the country; imparting learned behaviors that lead to functionality. Children with autism in Lane County have access to a structured life and services through the public school system and the Lane Education Services District (ESD). But when they turn 21, that structure is largely gone. The transition from the regularity of the public school system into the chaotic “real world” is a crucial part of the life of a person with autism. The goal of the system prior to that is to prepare them for the world at large, and the goal of the system after that point is to help them cope. Mary-Minn is proof that adults with autism can live and work in a society, although she says it can be tough. “Sometimes I just have to surrender to an idiosyncratic brain,” Mary-Minn says, listing a whole host of difficulties she tries to overcome on a regular basis: inability to efficiently transition between activities, problems with changing plans on the fly, sensitivity to loud noises, difficulty with visually chaotic elements, lack of facial recognition, missing social cues, and a regular undercurrent of anxiety. “On an averageday, Mary-Minn will have at least one episode, which she calls a ‘freak-out,” says Mary-Minn’s husband of 16 years, theoretical physicist Saul-Paul. “They don’t last very long, they’re more like squalls than storms... I think part of the reason she does better is that she’s very smart; she can use reason to get through things.” Mary-Minn’s self-titled “freak-outs” usually involve either losing something or transitioning between activities, a process she describes as “committing Hara-kiri.” Saul-Paul says she has trouble when emotions get the best of her, but as long as she can rely on her intellect, she’s highly functional. Occasionally, though, she’ll scream when a motorcycle goes by outside because she has serious sensory issues, another classic trait of ASD. Saul-Paul can love and live with Mary-Minn because he understands that her brain works differently that that of a neuro-typical individual. But autism is something that even the medical research community doesn’t fully understand. With a recent Center for Disease Control study showing that 1-in-150 people born in the United States have some form of ASD, however, researchers are scrambling to find causes and treatments. Autism is a brain disorder for which there is no known cure. There are numerous theories about how and why autism happens. According to the Autism Society of America, there are current, ongoing studies looking into the possibilities of a link between heredity, genetics and medical problems. Researchers have found that autism tends to run in families, but it’s brought on by environmental factors like pollutants, heavy metals and other toxins. There’s also a possibility that MMR (mumps, measles and rubella) vaccines could cause the onset of ASD. A 2001 study from the Institute of Medicine did not find a direct connection exactly, but said that it “could not rule out” the possibility. Diagnosis of ASD is based on symptoms in three broad areas, according to psychologist and autism expert Sondra Marshall, Ph.D.: Impairment of communication, social skills deficits, and repetitive, stereotypical idiosyncratic behavior like hand flapping and obsessive interest in selected topics. Marshall is also a clinician who works with autistic clients to help them function in society. A large part of this is simply trying to get people with autism to intellectually grasp what neuro-normal people know intuitively; that other people have different realities and feelings than you do. To do this, she delves deeply into what is known as “Theory of Mind.” “It’s basically the capacity to understand that you have different thoughts than I do, and that you might even be thinking and forming opinions about what I’m doing, and vice versa,” says Marshall. She uses the following hypothetical situation as an example: Say a child is brought into a room with a cardboard box of M&Ms on a desk, which is full of tacks. The child first guesses that it’s full of M&Ms, but is then shown it’s actually full of tacks. A second child is then brought in, and the first child is asked to guess what the second child will think is in the box. A neuro-normal child will say they will guess M&Ms. An autistic child will say they will guess tacks, because they don’t understand that the other child hasn’t been privy to their own experience. Since people with autism generally lack the ability to sense what others are thinking via the normal channels, such as body language, Marshall expresses it visually through cards, where red means bad and green means good. Lane Education Services District behavioral consultant Brad Passenger uses similar tactics in helping kids with autism within South Lane School District. He’s found that a lot of students with autism have “melt-downs” when something unexpected happens. So Passenger uses a card with a red triangle signifying that something is going to be different, which usually causes a smooth transition. “It’s like a road sign. You take the road sign out, and you crash over the guard rail,” says Passenger. “But with autism it’s a thousand times worse.” Passenger has found that not using visual cues can result in violence – he’s been smacked more than once when he’s made a change without first communicating it visually. “That’s just them telling you that you’ve messed up their world,” he says. Using visual communication is a tried-and-true approach, and according to Marshall and Passenger it works well when the surrounding environment can be controlled. That becomes a problem when children with autism become adults with autism and leave the safety and regularity of the school system. It’s Christopher’s (last name omitted for privacy) 25th birthday party at his home, where he’s cared for by adult foster care provider Debbie Noon. Christopher is severely autistic. He worked his way through the public school system at Cottage Grove High School, but upon turning 21 he had to move on. Living at home wasn’t an option, so now he’s wound up at the loving home of Debbie, located near Dorena. Chris doesn’t talk much, saying only the occasional “please,” “more,” “water,” — things like that. He knows what’s going on, though. He opens up a Super soaker squirt gun, one of his presents. With a sly look, he points at a nearby partygoer, indicating he’s going to soak her later. Christopher is understandably the center of attention today, it being his birthday, but Debbie explains that’s pretty much the way it always is. “Life pretty much revolves around Christopher,” she says. “He needs consistency, a schedule. That means everything happens the same way every day. In fact, he keeps me on schedule.” It’s not clear where Christopher would have wound up had Debbie Noon’s foster care not been available, but it’s tough to imagine a better situation for him. Christopher is not self-reliant the way that Mary-Minn Sirag is, because his autism is different, far more severe. He needs a controlled atmosphere where he won’t be surprised, and luckily he’s found one. Dr. Marshall refers to this as “environmental engineering,” or creating a world that is copasetic for the autistic person. South Lane School District Special Education/ Life Skills Teacher Gene O’Neil worked with Christopher extensively for years. “For him to be at the point that he’s at now, it’s miraculous,” says O’Neil. There are many differences between Christopher and Mary-Minn, but the most obvious one is that she can communicate at a very high level and he can’t. As such, she gives an opportunity for the neuro-typical community to see just how different the world can look through an autistic lens. Visual chaos is maddening for Mary-Minn, so she’s always organizing and re-organizing. She’s incredibly sensitive to tastes, to the point that a single bite of food will tell her every ingredient in it. This has the upside of making her an incredible cook, but it also means she has trouble eating food that’s not up to her strict standards. She’s constantly making to-do lists, and she has an extensive checklist that she must complete before she gets to bed. She packs supplies whenever she leaves the house. Mary-Minn drives, but woe to the person who tries to get her to take a detour. Most things just take awhile. She hates games, calling them “organized fun.” Even with her analytical approach to thinking — hers and others — Mary-Minn still has trouble understanding people. “Learning to read social cues is rocket science to us. It’s not a trivial accomplishment,” she says. Mary-Minn’s life hasn’t been perfect. She’s been the victim of bad relationships, been fired from about 15 jobs and gone through long stages of her life trying to hide her autism. Butshe says she’s lucky to have found a partner in Saul-Paul, and thus avoided the “epidemic of loneliness” that adults with autism suffer from. Mary-Minn’s story is a testament to how much adults with autism can accomplish, although she wouldn’t put it that way. “I’m not going to talk about my ‘inspirational story.’ I don’t want to be an autistic person on a stick,” she says. “My mission in life is to make the world a little more comfortable for people with autism.” In the several months I’ve spent gathering information about autism for this two-part series, there’s a question I’ve asked parents, doctors, behavioral specialists and people with autism themselves: why isn’t there more public awareness about autism? Nobody has had a good answer
for that. The numbers are certainly there, as the Center for
Disease Control has determined that one out of every 150 people
born in the United States will have some form of Autism Spectrum
Disorder. For boys in Lane County that number is one in 94.
By the numbers, that’s an epidemic. Yet, there is no panic in the streets. George W. Bush isn’t making stump speeches about how we all must come together to battle this. And the media has just recently caught on to autism, including myself. Why? Perhaps it’s because autism lacks the obvious physical deformities of, say, polio. Or maybe individuals with autism frighten people. It could just be that the United States is still behind the times when it comes to mental disorders. After all the, horrors of insane asylums in the early 1940s aren’t too far behind us. I can’t speak for anyone else, but I will say honestly and openly that doing this story made me uncomfortable. The most disconcerting thing was that people with autism generally knew they were different. They would talk openly about the world in which they lived, so far from the rest of us. The truth is that thinking and talking about autism necessitates that we change the way we think about human perception and reality. People with autism regularly told me they couldn’t tell where their body ended and the rest of the universe began. What sounded like a pleasant noise to me was a terrifying cacophony to their autistic ears. I came across stories of people who could actually see sounds — certain tones would be green or red — because their sensory wires were crossed. This kind of thing is, admittedly, unsettling. But I’ve tried to portray individuals with autism as people first, and autistic second. There was one young man I talked to with Asperger’s Syndrome, 23-year-old Tommy Seiffert, whose story didn’t make it into this series because, well, it just didn’t fit. It happens. At the end of the interview he said, “I want everyone to know that people with Asperger’s and autism can function and be successful. I don’t think people know there are people out there walking around with it.” I can’t say that
I’m comfortable with autism, but now I know that there
are people out there walking around with it. Hopefully a few
people will have read these stories and found out as well.
It’s a start.
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