New DVD on Siblings: Understanding Brothers and Sisters on the Autism Spectrum

A new DVD, produced by Coulter Video, is designed to help siblings understand their brothers and sisters with autism. "Understanding Brothers and Sisters on the Autism Spectrum" includes four programs. The program for siblings 4 through 7 years old features a live narrator interacting with puppets. Two programs, for siblings ages 7 through 12 and age 12 through adult, include interviews with siblings describing how they’ve learned to deal with a wide range of autistic behaviors and found ways to enjoy interacting with their brothers and sisters on the spectrum. The fourth program, designed for parents, describes ways they've found to help their children accept and support each other.

The DVD does not cover Asperger syndrome because the company plans to release a second DVD in this series, "Understanding Brothers and Sisters with Asperger Syndrome," in late August 2007. This DVD will feature interviews with families who are dealing with AS.

This company does fine DVD's to help explain the spectrum utilizing knowledgeable teachers, professionals and individuals on the spectrum to share practical experiences on autism and Asperger's. AHA has reviewed many of them in our newsletter, On The Spectrum.

Operation: Adventure - A camp experience for children with autism spectrum disorders

From our good friend Jill Hudson (graduate of Brenda Smith Myles' excellent ASD program)

REGISTRATION IS NOW OPEN

Operation: Adventure - A camp experience for children with autism spectrum disorders

When: August 7-10, 2007

Where: Cuyahoga Valley Environmental Education Center

Who: Children with ASD ages 8-14

Cost: $325 per camper

Space is limited! Send your applications in soon!

More information is available on the OCALI website: http://www.ocali. org/family/ fs _events.php

If you have questions, please contact:

Jill Hudson - camp coordinator at OCALI

Jill_Hudson@ ocali.org

Chelsea Cohen - Program Director at Cuyahoga Valley National Park Association

ccohen@cvnpa. org

Science on Trial

By ROY RICHARD GRINKER
June 30, 2007; Page A6

Autism awareness has spread throughout the globe. Societies that never had a word for autism are inventing them, and autism societies are being founded on every continent. But while there is considerable agreement about how to define the signs and symptoms of autism, every society has their own ideas and beliefs about what causes it and how to treat it.

Autism has been linked to witchcraft in Africa, to poor mothering in France and South Korea , to divine blessings among some communities in Israel and India , and to measles in the United Kingdom . In most places, there are competing, co-existing systems of thought about autism, and the United States is no exception.

Over the last three weeks, I listened to testimony in the first of nine test cases in the U.S. Vaccine Court (Cedillo v. Health and Human Services) considering the question of whether a mercury-based vaccine preservative called thimerosal (which used to be in many vaccines), or the measles-mumps- rubella (MMR) vaccine, or both together caused autism in Michelle Cedillo, the plaintiffs' daughter.

I heard some of the world's leading experts on autism, immunology and vaccines testify that there is no biological model to account for an autism-vaccine connection, no scientific evidence or credible studies linking the two. They argue, instead, that autism is largely genetic.

And yet just last week, Robert F. Kennedy, Jr. wrote on the Huffington Post Web site that there are "hundreds of research studies" from dozens of countries providing "undeniable" proof that vaccines cause autism, and Rep. Dan Burton (R., Ind.) wrote a letter to the president of NBC claiming there was increasing evidence that thimerosal has contributed to an epidemic of autism. Scores of Web sites and autism advocacy groups are convinced of the connection, and the vast majority of scientists and physicians can't understand why. How is it possible that there could be two such contradictory explanatory models?

The judges presiding over Vaccine Court are being asked to believe in an elaborate set of arguments. To find for the plaintiffs, they will have to decide that the preponderance of the evidence suggests it is more likely than not that there is a true increase in the incidence of autism linked to the increase in numbers of vaccines children receive; that thimerosal can compromise the immune system; that the immune system would therefore be vulnerable to the measles vaccine virus; that the vaccine virus can cause a persistent infection in the gastrointestinal system, and the infection can cause autism -- and that all of these things occurred in the case of Michelle Cedillo.

The scientific testimony has been devastating to the plaintiffs because the recognized experts on autism, vaccines and immunology do not support even one of these premises, let alone a link between any of them. The only thing the government and the Cedillos agree on is that Michelle Cedillo has autism.

Scientists hope that a decision against the plaintiffs will slow down the antivaccine movement, and parent groups hope that a decision for the plaintiffs will prove that the government's vaccine program has poisoned a generation of children. My own view, as a parent of a child with autism, and as someone involved with epidemiological research on autism, is that neither vaccines nor anything ever contained in vaccines is related to autism or the increase in the prevalence of autism.

I base my opinion on scientific literature and no court decision is going to change it. Neither will a court decision change the minds of the antivaccine advocates. Two distinct communities have emerged, and though they both employ the language of science, their ideas are simply incommensurable. The two groups co-exist, like creationism and evolutionary biology, but they operate on such different premises that a true dialogue is nearly impossible. The plaintiffs, for example, are so convinced that the root of autism is to be found in mercury that they did not even call a single autism expert to the stand in a trial about autism.

Scientists are supported by an enormous network of publications and scientific agencies, but the antivaccine groups have their own support, mostly on the Internet. Spend just a few minutes browsing antivaccine chat groups and blogs and you will find widespread validation of the mercury-autism link, and a pronounced disdain for prestigious journals like Science, Nature and scientific peer review in general.

We should not expect too much out of this trial, or the next eight. The scientific community and antivaccine parent groups will each continue to look for clues under their own lampposts, because that is where the light is. But we should pay careful attention to this conflict. The antivaccine movement may be evidence that public confidence in science is eroding, which means that public health is at risk too.

Mr. Grinker, professor of anthropology and the human sciences at George Washington University and editor of the Anthropological Quarterly, is the author of "Unstrange Minds: Remapping the World of Autism" (Basic Books).

Autism Conference at Omega Center 2007

August 17-19

Autism Conference at Omega Center 2007

Temple Grandin

Valerie Paradiz

Stephen Shore

Oregon bill will help families dealing with autism, Asperger's, PDD for treatments (OT/SLP)

Published: Friday, June 29, 2007

Parents of children with developmental disabilities have something to celebrate. House Bill 2918, which requires insurance companies to cover certain kinds of treatment for pervasive developmental disorders, awaits the governor's signature- .

The proposed new law was passed unanimously by the House on May 11. After making several amendments, the Senate passed the bill, and the House concurred with the amendments Tuesday.

State Rep. Chris Edwards, D-Eugene, a sponsor of the bill, expects the governor to sign the bill into law.

For years, parents have been frustrated to learn that treatments considered beneficial for people with autism - such as speech, physical and occupational therapy - were not covered by insurance. Under HB 2918, a health plan may not deny benefits for these rehabilitative services to children younger than 18 solely because that child has pervasive developmental disorder.

HB 2918 defines pervasive developmental disorders as neurological conditions including autism, Asperger's syndrome, developmental disability or mental retardation, and developmental delay. Currently, some insurance companies refuse to cover speech, physical and occupational therapy for PDD, even if the same child would be covered for identical treatment if he did not have autism.

For example, people who have trouble speaking after a stroke are routinely provided speech therapy by insurance companies. But many companies don't cover speech therapy for children with autism, even though both autism and stroke are neurological conditions creating problems with communication.

This restriction is short-sighted, because speech, occupational and physical therapy help people with PDD function better in the home, school, community and workplace.

"This bill says we must at least pay for treatments known to have a high positive outcome with reasonable predictability of improvement, such as speech therapy," says Edwards, who has a young son with autism.

Insurance companies still may limit the number of visits and the duration of treatment, and policyholders must still comply with the usual rules for deductibles and copayments.

The Senate has taken some of the teeth out of HB 2918, but even the amended version promises some measure of relief to families across the state.

"It's still a good bill, even though it's not as comprehensive as we'd like," Edwards says.

Unlike the original House bill, the Senate version applies only to children younger than 18. The original bill also required insurance companies to pay for treatment to help people with PDD maintain, as well as improve, their level of functioning.

Without continuous treatment, some people with PDD lose previously acquired skills. Opponents claim that paying for maintenance therapy is too expensive, although supporters say only a very modest increase in policy premiums would cover the cost.

Some opponents argued that insurers shouldn't have to provide coverage for autism because there is no known cause or cure. It's hard to understand that reasoning. If you have a condition that is usually covered by insurance, and it can reasonably be expected to improve with treatment, why does it matter what caused the condition? Why deny a child with PDD the tools to improve his speech, while providing the same services for a child with traumatic brain injury?

"Cause and cure are not the issues; treatment is the issue," Edwards says. "Insurance is the financial vehicle of choice for health conditions in our country, so it's appropriate that it (PDD) is covered."

No one in the Senate wanted to go on record as being against children with autism, Edwards says. Instead, opponents proposed amendments that weakened the bill until it became one they could vote for and still look supportive.

Although many insurance companies testified against the bill, a few have come out in support, Edwards says. "There is some division in the insurance community."

The bill also calls for the Health Resources Commission to review other available medical and behavioral health research on the treatment of PDD, and report to the next legislative assembly. Parents hope this will prompt a new bill mandating coverage for other well-researched treatments designed specifically for people with PDD, such as applied behavioral therapy.

This bill is long overdue. Children with autism learn and grow, given access to treatment. Many parents struggle to pay for treatment out of their own pockets, mortgaging their homes and liquidating their savings. Oregon families deserve better.

"This bill is a start," Edwards says. "But we still have a long road ahead of us."

Cynthia Whitfield (cynhome@msn .com) is a Eugene free-lance writer.

Who says autism's a disease?

By Limor Gal

"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 displ! ays 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 pe! ople 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 diagnosed with behavior disorders or with depression, anxiety, obsessive-compulsiv e 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 lea! rned 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 de! sert 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 a! nd 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, did! n'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- earrin! gs- 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, su! ch 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 t! he 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, ab! out 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.autistic s.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, an! d 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 tw! o 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 aw! ait 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 expr! ess 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 commun! ication 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 interprets 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. 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 (golanol@mail. biu.ac.il) . Discretion is assured.

Scientists Reverse Symptoms of Autism in Mice

06.25.07, 12:00 AM ET

MONDAY, June 25 (HealthDay News) -- Scientists may have uncovered a way to reverse symptoms of mental retardation and autism in mice.

Researchers from the Picower Institute for Learning and Memory at Massachusetts Institute of Technology (MIT) genetically manipulated the mice to model Fragile X Syndrome (FXS), which is the leading inherited cause of mental retardation and the most common genetic cause of autism.

FXS is tied to a mutated X chromosome gene called the fragile X mental retardation 1 ( FMR1) gene. When this gene is mutated, it can cause mild learning disabilities to severe autism.

"Our study suggests that inhibiting a certain enzyme in the brain could be an effective therapy for countering the debilitating symptoms of FXS in children, and possibly in autistic kids as well," study co-author Mansuo L. Hayashi, a former Picower Institute postdoctoral fellow currently at Merck Research Laboratories in Boston , said in a prepared statement.

The enzyme that was inhibited in this study is called p21-activated kinase, or PAK, and it affects the number, size and shape of connections between neurons and the brain.

When PAK's activity was halted, the brain abnormalities in the FXS mice were reversed.

"Strikingly, PAK inhibition also restored electrical communication between neurons in the brains of the FXS mice, correcting their behavioral abnormalities in the process," co-author Susumu Tonegawa, 1987 Nobel laureate and Picower Professor of Biology and Neuroscience, said in a prepared statement.

Tonegawa said that there are known chemical compounds that can inhibit the activity of PAK, which is something that may be useful in developing drugs to treat FXS.

The FXS mice showed abnormalities similar to those in FXS patients, including hyperactivity, purposelessness, repetitive movements, attention deficits, and difficulty with learning and memory.

When the activity of PAK was inhibited, these abnormalities were partially or fully ameliorated.

"Notably, due to an elegant genetic manipulation of method employed by the Picower Institute researchers, PAK inhibition in the FXS mice did not take place until a few weeks after appearance of disease symptoms. This implies that future treatment may still be effective even after symptoms are already pronounced," Tonegawa said.

The findings were reported in the June 25-29 online early edition of the Proceedings of the National Academy of Sciences.

More information

The National Autism Association has more about autism.

Ped Med: Many sides of autism

By LIDIA WASOWICZ

SAN FRANCISCO, May 11 (UPI) -- On the question of extraneous physical problems that beset many children with autism, many practitioners and parents are starting to come together.

Mainstream medicine is beginning to pay serious attention to, and act upon, parents' long-dismissed contention that something other than the disorder itself is affecting their children's health.

An increasing number of specialists have started to aggressively treat and study the relevance to autism of medical conditions -- including acid reflux, diarrhea and other gastrointestinal ailments, sleep disturbances, food allergies and metabolic irregularities that make it difficult for the body to adequately break down certain biochemicals.

These maladies are commonly experienced by autistic children and may be contributing to their behavioral problems but often go undetected due to lack of physician awareness and patient articulation, doctors say.

A major move toward correcting that oversight has come with the establishment by six leading hospitals of the Autism Treatment Network.

Among priorities topping its agenda, the group is drawing up national guidelines for providing autistic children with physical examinations complete enough to catch any underlying medical conditions. It also plans to conduct clinical trials to identify problems that are most likely to affect this patient group.

One large and largely overlooked health issue facing children, especially adolescents, with autism is common to most American youth: failure to stay in shape, according to a six-year Indiana University review.

Just like all youngsters, those with autism spectrum disorders can give their bodies and minds a lift by kicking up their activity level. However, they are given an even skimpier possibility than their peers to exercise their right to fitness, the researchers said.

Many districts have eliminated or minimized structured school-based opportunities for burning calories and building muscle, such as recess and physical education. In addition, community-based programs frequently are thin on trained staff and support services needed by autistic youngsters.

Young people with autism spectrum disorders often aren't in the running for team sports which require a quick pickup on social cues to keep the game moving.

What's more, having no physical disability, they do not qualify for such events as wheelchair racing or Special Olympics, although some have succeeded in getting exemptions, the authors noted.

What may fit the bill for these athletes-in- waiting are individual or two-person sports, such as swimming, tennis, running and martial arts, doctors advised. Such activities provide a touch of the social element without making heavy demands for personal contact, they advised.

(Note: In this multi-part installment, based on dozens of reports, conferences and interviews, Ped Med is keeping an eye on autism, taking a backward glance at its history and surrounding controversies, facing facts revealed by research and looking forward to treatment enhancements and expansions. Wasowicz is the author of the new book, "Suffer the Child: How the Healthcare System Is Failing Our Future," published by Capital Books.)