Who says autism's a disease?
Is the rising level of autistism in Western society, including in Israel, evidence of a growing problem, or improved diagnosis? Whatever the case, as parents discover that a child is on the autism "spectrum," they often realize that they are too. Support communities, particular on the Internet, help many to lead more productive lives.
"For me, true freedom is to take the Jeep and drive out of here. But alone. It's too busy for me here." Ami Oach means every word, but also knows that a statement like that might sound a little odd coming from a person who lives in the heart of the desert, surrounded only by his wife, three children and the remains of an ancient Nabatean city. How can someone feel that things are "too busy" in the middle of nowhere?
Oach and his wife, Ayala, came to the farm at Shivta, south of Be'er Sheva, in 1994, and since then have built the site with their own hands, waging a constant battle against the physical conditions, budget shortfalls and the authorities. From the ruins of a structure left behind by a British mission that excavated the area in the 1940s, the two built a house, including three guest rooms, for their family. The structure encircles a shaded plaza in the center of which is a huge wooden table. The stone wall at the entrance displays a permanent exhibition of Bedouin agricultural implements, and all around is the desert and silence.
It took time for Oach, 37, to understand that he needs the quiet as much as he needs air to breathe. In fact, he started to understand it only in the past two years, since his first-born son, Tor, now 4, was diagnosed with autism. It then became clear to Oach that he himself was not just an odd duck, as he had always thought, but rather one who is somewhere along the "autistic spectrum," as it is defined today.
Quite a few people have undergone a similar process in the recent past. Reports in the past few decades speak of a rise in the frequency of autism, a comprehensive name for syndromes that are expressed, in part, through difficulties in interaction and communication, a need to focus on narrow spheres of interest, and repetitiveness. Until the 1980s the incidence of autism in the West was estimated at one per 1,000 in children. It is now thought to affect one in 166 in the United States and one in 200 in Britain. The incidence in Israel is estimated to be similar.
According to one explanation, it is not the number of those affected that is on the rise but rather the rate of diagnosis. But if the heightened awareness and the greater diagnostic capability have led to a rise in the number being classified as autistic, they have also brought about a considerable improvement in their condition.
Until about 20 years ago, many people with severe autism were thought to be mentally ill or retarded, or suffering from a range of illnesses. Many of the "high-functioning autistics," as those with a mild form of the disorder are known, were not diagnosed at all, and as a consequence were compelled, from kindergarten onward, to live on the margins of society.
Dr. Nahum Katz, of Clalit Health Services' Geha Mental Health Center, often identifies high-functioning autistics who have previously been been diagnosed with behavior disorders or with depression, anxiety, obsessive-compulsive disorder or schizophrenia.
Today it is clear that such diagnoses are far off the mark for autistics. Many high-functioning autistics are interested in, and capable of, being in contact with others, but do not know how to go about this. Because they find it difficult to understand and accept the norms of social behavior, they are liable to behave in a way that distances the surrounding society from them. At the same time, it is known that some autistics are able to teach themselves rules of social behavior (which most people grasp intuitively), enter into relationships and marry, and thus have not been diagnosed. Because autism is a hereditary syndrome, the children of autistics are also often on the spectrum, but it is only when the children are diagnosed that the penny drops for the parents, too.
A case in point is Dr. Sola Shelly, a researcher in one of the exact sciences from the center of the country and the mother of an adult autistic. Shelly is one of the founders of ACI, the Autistic Community of Israel, which was established about a year ago. ACI, like similar organizations in the West, defines autism very differently than the medical and academic establishments do - as a trait and not a disability - and its members' aspiration is for autistics to be treated as a minority group, not as people who are ill.
Accordingly, ACI does not require a formal diagnosis as a condition of membership. Anyone possessing autistic traits, whose definition is agreed on by the members of the community, as essential elements of his personality can join. Shelly, for example, has been formally diagnosed; Oach hasn't yet decided whether to begin the formal diagnostic process.
Look people in the eyes
As Oach, in slippers, walks along the sidewalks of the Nabatean city and explains the use of the various structures, he forgets himself. "I'm capable of walking around here all day, so if you get tired, tell me," he requests. "I don't understand body language; I understand verbal things. My wife explained to me that if someone yawns or scratches his nose, he might be tired of my speeches. But I have despaired of trying to learn that. I don't have that trait and that's that. Go know if someone is yawning because he's bored or because he's tired. And what if he scratches his ear? It's too hard for me to grasp it. On the other hand, I learned that you should look people in the eyes when talking to them and smile at the end of a sentence. That does not come naturally to me."
His own body language, Ayala says, is very frank. If Ami is bored by his interlocutor, that feeling is likely to be reflected immediately on his face. "When it happens with guests, I try to pull him out of the situation diplomatically."
The unconventional life he has created for himself is the latest chapter of an unconventional life. Oach (formerly Ohayon) was born in Petah Tikva, the eldest of three children. His father owned a small shoe factory, his mother was a housewife, and both now live in Canada.
There was always something different about him. The system did not understand him. He skipped from kindergarten to first grade, but at the end of the year he was held back. After repeating first grade Ami skipped again, this time into a class for gifted children, where, he says, he was the worst pupil ever.
"Socially, I was off on the margins," he relates, "but I was big, so no one bothered me." He didn't integrate into other frameworks either, and at the age of 15, after spending a year in Kibbutz Sde Boker in the Negev, he decided to live in the desert. For a time he lived alone, with a camel he had bought, and earned a living from tourists who rode the animal. Later a Bedouin family put him in charge of its camels.
In the army he served in a unit that hunted for smugglers. "I liked that," he says. "Lying for hours alone, looking at the landscape, at the leaves and the stones, learning the rifle again. It was wonderful. The problem was the soldiers. The whole social thing isn't clear to me. If there were 10 people here and they were all against me, I wouldn't realize it. Often, if I have to understand a social system, I draw a flow chart. If it's visual, and if I think logically about the motives of each person, I can get it."
The desire to remain to the desert led him to a preparatory course in Mitzpeh Ramon, where he met Ayala. How did he manage to forge a relationship with a woman? By being straightforward and persistent, he says. "I don't play games at all, but I am very stubborn. I say straight out what I want, and I just stay." They were married in 1994, agreed that they wanted to establish something original in the desert, and received permission to establish at Shivta a site of ancient agriculture and to renovate the nearby ruin. They slept in sleeping bags, cooked over bonfires and step by step built the ranch.
"It's appropriate for me to implement projects," says Oach. "I get up in the morning, look at my tasks, and that is the axis of my life. I have a path, a concrete route to follow. I maintain the ranch. My wife is in charge of the guest accommodations."
They began to suspect that something was amiss with Tor when he was 2 years old. Oach didn't understand what the problem was. He didn't talk and he pounded his head against the wall - "just like me at his age!" he says, laughing. Gradually, though, Oach started to realize that his son was autistic, and that he was not the only one. "I was able to make a good life for myself, and it's clear that I have high capabilities," he says. "But looking back, I remember people like me whom I met over the years but who did not survive. One went crazy, a few committed suicide, some were killed in suspicious accidents. I don't think that was by chance. You need to be very strong to cope with this difference, and not everyone has that."
Not the only alien
There are three principal syndromes on the autistic spectrum: classic autism, which is characterized by difficulties with social interaction and with verbal and nonverbal communication, and by repetitive behavior; Asperger's syndrome (AS), which is also manifested in difficulties of social interaction and of nonverbal communication, but which does not prevent language development and standard or sometimes exceptional intellectual ability (people with AS can focus and professionalize in different spheres of interest to the point of true expertise); and PDD-NOS, pervasive development disorder not otherwise specified.
Michal Maoz, 34, and her husband Itzik, Israelis who live in the United States, have two autistic children. Six years ago, their elder son, 14, was diagnosed with AS. "The psychiatrist referred us to material on the subject," Michal says by telephone. "I sat down and read it, and in fact found a correlation between the descriptions and what we had seen over the years in our son. But the big surprise was that I also found a correlation with my personal story."
Her son, she relates, did not make friends and did not understand social rules of behavior. "For example, when a boy visited us, he was capable of leaving him in one room and going to another to play. He did not make eye contact for long, didn't understand facial expressions or body language, couldn't conduct a conversation and had a low frustration threshold, which led to attacks of severe rage. He understood things completely literally and he had obsessions. I was familiar with all that from myself, but thought that he was simply like me! I was shocked when I realized that we are both autistic, but also relieved. At last I had found an answer to all the differences that always characterized me. At last I discovered that I was not a bad girl or the only alien in the world."
Maoz grew up in Tel Aviv with an older sister. Her father was killed in the Yom Kippur War; her mother remarried and had another son. She remembers always being different, difficult and weird, extremely shy in school but wild and brazen at home. "I had no social skills. I didn't know how to get along with children my own age, so I preferred to be alone. Later, when I wanted to make friends, I couldn't, and every new failed attempt made me despair anew."
As a girl who talked to herself and didn't pay attention in class, but who nevertheless received high grades, Michal was bullied for years and came home from elementary school with bruises almost every day. "I was very naive. There were girls who pretended to be my friends but at the same time made sure I was ostracized or beaten up. Every time they made up with me and promised to watch over me, I believed them anew." It was only in high school that she forged ties with a few "exceptional misfits" like herself, found ways to get along in society and served in the army, where she met her husband.
After marrying they moved to Rhode Island. Itzik worked in high-tech, while Michal, who in recent years has been engaged in painting, writing and assisting children on the spectrum and their families, recently opened her own jewelry business, also in the spirit of autism (www.aurtistic-spectrum.com). For example, one necklace-and-earrings-set is called "Eyes," referring to the eye contact that many autistics find so difficult to maintain.
For Itzik, life with three autistics seems perfectly natural. "When you get up in the morning," he says, "you don't think to yourself, 'I am coping with autistics.' When I met Michal, too, I didn't know she was autistic. Over the years you find ways to cope. For example, I know now it's hard for her to initiate phone calls with people she doesn't know, and if it's necessary to make an appointment with the doctor or talk to the teacher, I will do it."
On the spectrum
The idea of a married and parenting autistic clashes with the conventional image of autistics. They are generally perceived as insensitive and unemotional, incapable of speech or communication - the picture tends to be of someone sitting alone, rocking back and forth and muttering fragments of sentences to himself. There is also the image of the autistic genius, the savant, such as Dustin Hoffman played in the film "Rain Man," detached from his surroundings yet able to remember the contents of entire telephone books.
In reality, the autistic spectrum is very broad and diverse, and the current estimate is that about half of all autistics are capable of high functioning. Many of them are "Aspies" (from AS), who may possess high intelligence and be capable of extraordinary achievements. Senior researchers in the field, psychologist Dr. Ofer Golan of Bar-Ilan University says, believe that Albert Einstein, Isaac Newton and Ludwig Wittgenstein are famous examples of the syndrome.
According to the theory of one of the world's leading autism researchers, Prof. Simon Baron Cohen (cousin of comedian Sacha Baron Cohen), the autistic brain is "male" and has difficulty empathizing with or identifying emotions in others, but functions well in "closed" systems based on clear rules. "People on the autistic spectrum possess 'precise' thought," says Dr. Golan, who diagnoses and treats people on the autistic spectrum and who worked with Baron Cohen at Cambridge University. "You can find many of them in the sciences, computing and engineering, but also in other areas in which they can express their skills optimally. Many of them don't know that they are on the spectrum."
But even the emotional disability is not serious in all autistics. "It is true that many low-functioning autistics do not communicate," notes Dr. Michal Rapaport, director of the children's and youth clinic at Lev Hasharon Mental Health Center in Netanya, "but high-functioning autistics want a spousal relationship. It's possible that they will find it difficult to understand messages indicating that the other party is not interested, but if the other party is interested, they can definitely love and give. High-functioning autistics are fascinating people with broad and deep knowledge in different fields. Many times they find ways to get around the difficulties. One young man told me that he imitated the most popular boy in the class and repeated all kinds of opening lines until he found a good way for himself."
Still, problems can arise for them in relationships, and in many cases they end in separation. In the United States and England, Golan says, the field of advice for people on the spectrum is gaining momentum, and several manuals have appeared about "how to live with someone on the spectrum."
The knowledge that the person opposite you is autistic undoubtedly makes it difficult to perceive him as normal, and the fact is that when one meets an autistic one can generally sense something different in the look, the way of walking, the manner of speech. In a first meeting with ACI people it was easy to see how Sola Shelly and Ronen Gil, a 37-year-old who works in computers, slid quickly into a conversation packed with dates and technological details about the history of the computer and the Web. On the other hand, they did not flap their hands or recite information like robots, and anyone who didn't know different could easily think that they were "neurotypical" - normal in their linguistic and social capabilities. The trip to a meeting, and the meeting itself, like any contact with the outside surroundings, is not easy for them. Interaction with strangers who are not autistics demands a great effort on their part and obliges them to be present in a high-stimulus setting, maintain eye contact and decode subtext and body language.
Ironically, even adult autistics who have gone through life successfully without being diagnosed, are often captive to the stereotype of the autistic individual, and this delays their self-discovery.
"I always knew the phrase 'autistic bubble,' but I never understood its meaning and certainly I did not connect it to myself," says Gil, who lives in Nahariya. "Today I know that that 'bubble' is my world. I always knew that there is my world and the outside world and that they are two separate things, but I thought that this is just how things are. One day, about two years ago, I happened to come across the blog of an autistic woman, and she spoke my language, the language I had thought was mine alone."
Asked to describe the characteristics of that language, he laughs, as do Sola Shelly and Chen Gershuni, 37, from Rehovot. They find it hard to explain. "From an early age I read a lot of English," Gershoni says. "I was convinced that Hebrew speakers were difficult to communicate with and that this was the cause of my problem. I believed it would be easier for me with English speakers."
Gershuni, too, began his diagnostic process by chance on the Internet. Given his very high functioning, it's possible that he is not AS but a "cousin," someone who possesses traits typical of autism but to a lesser, subclinical level.
Tough ideas to swallow
A year after its founding, about a dozen people are attending meetings organized by ACI in private homes or parks. The organization has a Website (http://aci.selfip.org - Hebrew only) and two communities on the Tapuz portal. A few dozen people belong to the community for people on the spectrum, while the "Gesharim" (bridges) forum, for dialogue between people on the spectrum and others, has about 200 registered members. In both communities there are people who take issue with some of the organization's ideas.
ACI draws its inspiration from ANI (Autism Network International - http://ani.autistics.org) and from the autistic subculture that began to emerge worldwide a few years ago. Much of this development is derived from autistics who wrote about their lives and described how they taught themselves artificially things that others know intuitively. Gil, for example, says that at an early age he noticed that "hand-flapping" is a behavior that people in the vicinity do no appreciate, and therefore made it a habit to restrict his hand-flapping to the bathroom. "Another example," he says, "is the answer to the question 'How are you?' or 'What's up?' Often I start to actually answer the question. After all, I never ask a question about things I'm not interested in. But then I reconstruct the question and understand, based on past experience, that it is an empty question to which no answer is expected."
ANI was founded in 1992 by three people on the spectrum: Donna Williams, an Australian who wrote about her life in a book called "Nobody Nowhere"; Jim Sinclair, from the U.S., who is one of the leaders of the international autistic culture movement; and Kathy Grant, an activist in the Colorado community. Two years later an online discussion forum was created, and in 1996 ANI held its first gathering, Autretreat, which has been held annually on the East Coast ever since.
A European counterpart, Autscape (www.autscape.org), was created about two years ago and other local organizations have sprung up over the years. All of them celebrate Autistic Pride Day every June 18.
The autistics who are active in these organizations view autism as an integral element of their life experience, their personality and their worldview, whether they are high- or low-functioning.
One of the most central - and contentious - points in the approach of the community is that autism is not a disorder, disability or illness, but a different and legitimate way of life. Accordingly, it is wrong to invest in programs to eradicate or heal autism; those on the autistic spectrum should, rather, be helped to advance in society as they are, and taught, in accordance with their capabilities, all the skills they need.
This approach is a reaction to genetic research that seeks to achieve early identification of autism and to parents who invest immense economic and psychological resources in treating their children and eagerly await every movement of the child toward "normal behavior."
"The problem starts with the diagnosis," says Ronen Gil. "There is unnecessary investment in early diagnosis, and many times each diagnostician provides a different definition. The problem continues with the treatments, which are very intensive and from our viewpoint also cruel, because they try to extinguish the essence of the autistic."
According to ACI, the society should take a far more accepting and flexible attitude. "We are in favor of treatment," Shelly says, "but the goal of the treatment should be to cultivate each child's special abilities, not an attempt to remove the autism from the child. Children are put on extreme diets or placed in intensive treatment regimes, which are sometimes simply training. And if this doesn't help, the diet is made stricter or more hours of treatment are added. In our view, communication is a means, not a goal. The goal is to make it possible for autistics to express their desires, and it makes no difference how. Who said that correct communication is body language plus eye contact plus words? You can communicate with sign language, too, or with a photo album, and eye contact can be dispensed with."
An article written by Shelly in conjunction with Sue Golubock, a member of ACI and an occupational therapist, ahead of the 2007 Autreat, ANI's annual conference, held this week in Philadelphia, proposes a number of alternative principles for dealing with autistic children: "Prohibit behaviors that infringe the rights of others, and allow 'strange' but unharmful behaviors"; "Be parents, not therapists, play to enjoy and not to treat, refer to professionals for therapy in specific areas"; "When you decide for your children, be aware of your motives. Ask yourselves what the values are according to which you choose educational goals for your children, and beware of positing normality as a goal in itself. As your child grows older, share the decision-making with him more"; Don't turn to professionals so they will choose the goals for your children. Choose them according to their goals."
The ideas set forth by ACI can be hard to swallow, particularly for parents of low-functioning autistics. A tempestuous debate on the subject took place on the autism forum of Tapuz. "The whole thing sounds simply hallucinatory to me," says Iris, who works in computers and is the mother of a 5-year-old autistic boy. "The ACI people are working, independent, functioning individuals. How can they tell me that I, who am trying to get my boy to understand the most basic things - such as the Hebrew language, such as not to undress in the street - am doing something wrong? No one has the right to tell me that I have to let my child be dependent on me for the rest of my life, dependent, not independent, incontinent, not seeing to his personal; hygiene, running onto the street, eating with his hands - and that is the least of it. Already now he is the subject of mockery. I will certainly do everything I can to eliminate every autistic indication from his behavior."
Other parents, in contrast, feel that ACI opens up a window to their children. "Through adult autistics I can get to know my son better," says Doron Yizhar, a statistician who lives in the north of the country and is the father of Omer, an 11-year-old autistic boy (as well as another son, aged 5). "It allows me to understand what he is going through, how he experiences the world. If he wants to watch all his baby videos one after the other, I let him. If he wants to make hand gestures, fine. And if he wants to go around barefoot in the winter, I will not force him to do something else. As long as it does not endanger him or bother the surroundings, then as far as I am concerned, let him be what he is."
What to tell the boss
The Internet is a particularly convenient medium for autistics, as it enables communication in a structured and safe environment, without the need to read facial expressions or create eye contact. The Web has a wide range of sites for those situated at various points on the autistic spectrum, including a site in which they publish their photos and tell about themselves and another showcasing autistic culture, including painting, sculpture, poetry, a television station and an attempt to create a special language (www.members.lycos.co.uk/aspergia - Hebrew only). The file-sharing site Youtube has a video by an autistic woman that interpets the autistic logic in a series of gestures that appear meaningless, such as hand-flapping and humming.
In the concrete world, though, autistics encounter many problems, not least of which is finding a job. According to Shmuela Widberg, the chair of EFI-Asperger Israel, an organization of parents of children with AS (http://asperger.org.il - Hebrew only), many adults with AS have difficulty finding work. "Even if they have an academic degree, and are highly qualified, they may not last on the job because of problems of interpersonal communication, the difficulty they have adjusting to a hierarchy and teamwork and the problems they have understanding social codes. They don't always understand, for example, that you don't say everything to the boss."
In 2003, the Social Welfare Ministry opened a job-training center in Tel Aviv for people with AS, which is run by Beit Eckstein, (an organization that aspires to improve the quality of life of people with special needs). To date, about 50 AS adults have participated in half-year or year-long programs as part of the project. The program focuses on upgrading life skills in general, as well as social and communication skills, by means of workshops and protected trials on the job. One group is geared for academics, and at its end the center assists the graduates in finding jobs commensurate with their abilities and skills.W
In an effort to learn how people on the autistic spectrum cope with life challenges as adults, the psychology department of Bar-Ilan University is conducting a study that includes (paid) interviews with independent adults aged 21-30 who are on the spectrum and are integrated in employment and/or academic frameworks. Anyone interested in participating should contact Dr. Ofer Golan (email@example.com). Discretion is assured.
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