A house for life

By
September 19, 2005 02:25

In two years, 21 autistic Israelis aged 14 to 42 will have a home of their own.




Guards checked and doubled-checked those arriving for a ceremony in a large tent set up off Rehov Tzvia Ve'Yitzhak in Jerusalem's Gilo quarter before President Moshe Katsav and his wife, Gila, were about to enter. But when some members of the audience yelped, interrupted, fidgeted, applauded in mid-sentence and even stood up and walked off, none of the security men was startled or even stared, as they had been briefed in advance. The audience consisted of autistic teens and adults accompanied by their relatives, caregivers and counselors, and heads of ALUT, the Israel Society for Autistic Children. An outsider could immediately appreciate the urgency of the project being launched at the cornerstone-laying ceremony, held some 13 years after desperate parents of autistic youngsters first dreamed of a permanent residential and treatment home abayit lehaim for 21 of them ranging in age from 14 to 42. The Gilo hostel, made possible by funds from parents, ALUT, a NIS 1.5 million donation from the Israel Corporation Group, Israel Chemicals and Zim, and land allocated by the Jerusalem Municipality, is due to open in two years. Residents will live seven to an apartment, with a kitchen and central living room for each unit, and a joint treatment room and other facilities for all three flats. Among the treatments believed to help are cognitive behavioral therapy, antidepressants, occupational therapy and, of course, employment in sheltered workshops. Taking care of an autistic child is more than a full-time job, and it demands strong nerves, boundless love, ceaseless patience and quite a lot of money. Some marriages break down under the constant weight of stress and concern, while as they grow older, the parents worry who will take their place as caregivers when they pass away. Riki Zeigelman, the mother of 21-year-old Yehoshua who will be a resident of the Gilo hostel and a major force behind the establishment of the hostel, described what living with an autistic child is like. "Your other children lock the doors in their rooms at night so no damage is accidentally done. Siblings don't get the attention they deserve because you are so busy looking after the autistic child," says Zeigelman, who lives with her family in Gush Etzion. You don't use any glass plates or cups because you know they would be broken." Yehoshua "jumps, runs and shouts but he still cannot say what he needs. Parents know they won't live forever. We had to find a solution." The president, who remembered his involvement in helping autistics when he served for four years as minister of labor and social affairs, said that even when they reach adulthood, victims of the disorder "remain our children." He called on Israeli society to take more responsibility for its weaker elements and to help them become more happy, integrated and independent. The word "autism" derived from the Greek word autos ("self"), was first used in the English language in a 1912 issue of the American Journal of Insanity, but the first form of autism was scientifically described only in the 1940s by Dr. Hans Asperger, an Austrian scientist who described his patients as "little professors." That form of autism, of the five pervasive developmental disorders, is commonly referred to as a form of "high-functioning" autism. The disease was classified in 1943, when Dr. Leo Kanner of the Johns Hopkins Medical Center studied 11 children and called it "early infantile autism." Until the 1970s, said ALUT chairman Meir Shani, autism was regarded as a psychiatric illness, and patients were hospitalized in mental institutions. But finally, experts began to recognize autism as a spectrum of developmental and behavioral conditions characterized by varying degrees of difficulty in communication skills, social interactions and restricted, repetitive and stereotyped patterns of behavior. Gradually, autistic children, teenagers and adults were discharged from psychiatric institutions and sent home. ALUT, founded by parents in 1979 and headed for many years by the late Leah Rabin, raised funds and managed to promote awareness of the disorder, establish treatment facilities and help rent or build residences for teenagers and adults. There are 16 such residences around the country, including Kfar Ofarim in the Sharon region and Beit Leah Rabin in Holon. There are currently three rented ALUT hostels with just 42 residents elsewhere in Jerusalem, but since they are not owned, residents have frequently have to move from place to place and get used to their new surroundings. The permanent bayit lehaim will bring stability and peace-of-mind to residents, their parents and siblings. There is great diversity in the abilities and behaviors of the autistic: Some are very hyperactive, while others are less so. Some suffer from mental retardation, while others are talented "savants" with high IQs. Doctors will often reach different conclusions about the appropriate diagnosis because patients' sensory systems can be very different. Babies naturally are social creatures who look at people, especially their mothers and caregivers but also strangers; turn toward voices, grasp a finger, and even smile. But experts note that most autistic children prefer objects to faces and seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Many do not interact and will avoid eye contact, seemingly indifferent to other people. Other symptoms may include oversensitivity or underreactivity to touch, movement, sights or sounds; physical clumsiness or carelessness; poor body awareness; a tendency to be easily distracted; impulsive physical or verbal behavior; an activity level that is unusually high or low; the inability to unwind or calm oneself; difficulty learning new movements; difficulty in making transitions from one situation to another; social and/or emotional problems; delays in speech, language or motor skills; specific learning difficulties and delays in academic achievement. The autistic may have trouble hearing certain people, while other people are louder than usual, or be unable to filter out sounds in certain situations, as in a large crowd of people. Usually looking physically normal and having good muscle control, autistics may nevertheless demonstrate unusual repetitive motions that make their behavior look odd to others. Some children and older individuals spend a lot of time repeatedly flapping their arms or wiggling their toes, while others suddenly freeze in position. As children, they might spend hours lining up their toys in a certain way; if someone accidentally messes up the order, the child may become very upset. Autistics often need, and demand, absolute consistency in their environment. A slight change in any routine in mealtimes, dressing, taking a bath, or going to school at a certain time and by the same route can be extremely disturbing. Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. As autism is best diagnosed and treated early and its presence cannot be determined in genetic tests, identifying victims during the first two years of their lives is vital. Prof. Geraldine Dawson recently reported at the Fourth International Meeting for Autism Research in Boston that a failure to engage in such normal social activities as looking at a parent's face or listening to speech sounds early in life may help explain the profound impairments in social and language development shown by most autistic children. Dawson, a psychologist and director of the Autism Center at the University of Washington, has begun testing a new intervention program for autistic toddlers that focuses not only on language and cognitive development but also promotes the emotional relationship between a child and other people. "We are examining whether this very early intervention that focuses on social engagement alters the course of development," she said at the conference. We will be examining the child's brain responses to social stimuli. We hope to find that our intervention not only affects behavior but also alters the trajectory of early brain development toward a more normal one." As most interventions for autistic children are designed for children of preschool age or older, effective programs for toddlers are very much needed. An article published recently in the Annals of Neurology reported that inflammation in the brain was clearly a feature of autism, and offered strong evidence that certain immune system components that promote inflammation are consistently activated in people with autism. Signs of autism can be detected in babies as young as six months old, according to a meticulous, five-year diary recently published by an American mother of fraternal twins, an autistic boy and a normal girl, now 12 years old. Prof. Mel Rutherford, a psychologist at McMaster University, wrote in the journal Neurocase that the diary provides a "rare and unprecedented opportunity to observe the early development of autism." The mother wrote entries, comparing her children's behavior, almost daily from birth, unaware that one twin would be diagnosed as autistic at the age of three. During the first six months, both twins smiled, engaged in socially responsive vocalization and showed a preference for family members over other people. By the age of one, however, the male twin showed less eye contact, verbal communication and affection toward others than did his sister. His sleep patterns were also noticeably different from hers. By their second birthday, the boy had developed a fixation on particular patterns and puzzles, and his facial expressions ranged from limited to "spaced-out." Shani told the Gilo audience that while it is difficult to bring about dramatic improvements in autistics when they are already adults, 50 percent of autistic children can live among the general population despite their limitations if they are suitably treated when young. There has been much talk of an "epidemic" of autism in recent years, as many more cases are being diagnosed. Most experts maintain that this is not because of some environmental influence, such as pollution, overuse of antibiotics, side effects of childhood vaccinations or "bad mothering." This last disproven theory has been a painful subject, as the late, controversial American-Jewish psychologist Bruno Bettelheim, who studied life on the kibbutz, blamed what he called "refrigerator mothers" for being cold to their infants and causing them to "disconnect." Mutant genes have been partially blamed for autism, but much still has to be discovered. A new Cincinnati Children's Hospital Medical Center study, published in Molecular Psychiatry, links regions of two chromosomes to susceptibility for a type of autism characterized by regression in development, including the loss of previously acquired language, social skills or both. But it is certainly not hopeless. The potential of autistic young people to live fruitful lives was demonstrated by Tali Bromberg, an attractive young autistic woman who beautifully sang several Hebrew songs at the Gilo ceremony while her mother, Rivka, accompanied her on the organ. Tali's performance captivated the guests, who besides the president and first lady included Jerusalem Mayor Uri Lupolianski, Idan Ofer and Yossi Rosen of the Israel Corporation Group, ALUT director-general Margalit Tirosh and National Insurance Institute director-general Dr. Yigal Ben-Shalom. Introduced by TV star and volunteer host Daniel Pe'er, the Brombergs received a long ovation for their performance, and several in the audience had tears in their eyes.


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