Uncategorized

World Community Autism Program is a Not-for-Profit organisation based inSouth Africa dedicated to have autism redefined as a treatable condition, and support that new definition through research. The founders and directors, Max and Sandra Desorgher have been researching autism as an immunogenetic condition caused by an immune system choice during fetal development since 1994. We have identified lutein, a dietary pigment found in many foods, as a pathogenic substance in the autistic population. As lutein is a chemical too small to produce an antibody response, we identify it as a hapten'. In this paper, we explain how vaccination practice over the last 100 years could have led to an immune system 'evolution' that would target a plant substance as 'non-self' pathogen. Extract from 'Autism - the vaccine connection' by Sandra and Max Desorgher, directors, World Community Autism Program: 'Autism is most easily understood as an immune system adaptation to the genetics of the individual and a response to the environment. It is the strength of the adaptability of the organism which results in it's capacity for survival. We are at the threshold of great changes taking place in our human development. Some of these changes are a direct result of man's creative ingenuity and the fight for survival. At the scientific level this has included vaccination. The development of the vaccine and the further development of more vaccines have contributed to evolutionary changes which can be seen in the human population and will likely be seen in the future generations in ways which we cannot yet begin to comprehend. The evolutionary changes of modern man are seen first and are most evident in the ethno-culturally diverse populations. The areas of our chemical design are most vulnerable when two different types of people come together and this vulnerability can be additionally impacted by a dramatic change in location for which either or neither individual is biologically prepared resulting in offspring who exhibit the wide range of variation some of which is seen in modern day disease etiology. Areas of our chemical design which are most vulnerable are not exclusive to ethno-culturally diverse populations; in isolated populations where there is little change in genetic and environmental input the weakness of the population can also be seen as diseases which are prevalent in that culture. Add to this scenario the innovations of modern science which include the development of vaccines, genetic engineering of our food, the use of food additives and chemicals, crop spraying and artificial fertilizers, seasonal foods now used for year round consumption, electricity, motor transport, industry, television, computers, cell phones and then look at the available information which indicates how we, as humans, are reacting to these changes. The molecular biologists, using some of the most advanced tools of modern man, are finding some of the patterns and changes which are taking place in our human population. Some of the most recently studied areas are the 'hypervariable regions' in our DNA and in particularthe Human Leukocyte Antigens (HLA) histocompatibility antigens governed by genes of the HLA complex and the human major histocompatibility complex (MHC) - a region on the short arm of chromosome 6 with regions A, B, C and D - the region of our DNA which interacts with our immune system. Immunogenetic (IoGc) research is telling us that how we develop in the womb is not governed solely by our DNA and the environmental insults (impact) that the fetus is susceptible to, but is also due to the response of our own developing immune system. The immune system develops to protect the host and the impact of the immune system during fetal development includes changes which alter our genetic make-up. Some of the terms used to describe these processes are so far called transduction and frameshifting.' The entire article is available from the WCAP website: http://www.saras-autism-diet.freeservers.com/literature/connection.pdf

Article By: Rosa Martinez Article Date: 05/23/2008 The concept of WAAD: Artworks by individuals on the Autism Spectrum is to expand our understanding of the diversity of people on the autism spectrum while educating the world about the abilities and opportunities to encourage advancement in every human beyond their individual challenges. The participating artists shared their contributions with the world as an extension of this message to “train the talent” and to foster independence. “Don’t ‘dis’ the ability” 2008 featured artworks of artists with autism from around the globe including Temple Grandin, Ping Lian Yeak, Stephen Wiltshire, Gregory Blackstock, George Widener, Christophe Pillault, Jonathan Lerman, Jessica Park, Richard Wawro, Donna Williams, Amanda LaMunyon, Seth Chwast, Susan Brown and works by children from the state of Qatar. Each artist contributed a percentage of the sales proceeds toward autism research! The opening reception of this extraordinary exhibition at the United Nations was a phenomenal event. Twelve year old participating artist Amanda LaMunyon flew in from Oklahoma with her mother Sherry and her brother J-Paul for the Autism Speaks and Qatar sponsored WAAD events. Amanda began painting when she was 7 years old and was diagnosed with Asperger’s Syndrome at the age of 8. She began reading at the age of 4. In kindergarten she drew all her ABCs instead of cutting out pictures for them. This was the first sign of Amanda’s artistic ability. At the opening reception Amanda astonished the audience with an eloquent recital of a poem she wrote entitled “A Little Secret” http://www.amazing-kids.org/ezine_22/littlesecret.html In the poem she described how “a little tag on her clothes might feel like sand paper, how food needs to taste just right or it won’t be eaten, how being around a lot of people sometimes makes her want to run”. She described the existence of Asperger’s in a way that no book description could ever convey. Amanda shares her story and talents with all who will listen and hopes to give us a different perspective of people with differences. Also attending the United Nations opening reception live was savant artist George Widener. George who is often described as “eccentric, socially aloof, and obsessed with arcane subjects humored the audience with several “witty” statements such as “I don’t do poetry” when his introduction followed Amanda’s recital. Imagine possessing such a massive memory that you could recall thousands of historical trivia, facts, or world census figures. George is called a “lightning calendar calculator”. In 2004 he defeated a former NASA scientist who was using a laptop computer in answering the question "What day of the week will June 25th be in the year 47,253?”. George graduated from the University of Tennessee at Knoxville at age 37 earning a general Liberal Arts degree, Cum Laude. At the reception George introduced himself as having the “best calendar memory in the world” and asked for a birthdate from anyone in the audience. Suzanne Wright (co-founder of Autism Speaks) initially volunteered her birthday, but George needed a year of birth. Needless to say, he went on to choose a male volunteer. Upon hearing the man’s birthday, George responded within seconds “Your birthday is on a Thursday, you will be 18,993 days old”. George uses his amazing memory to create unique contemporary artwork. The United Nations Exhibition was hosted at the Secretariat building which is the administrative home base to the UN delegates. Due to limited space capacity the exhibition was not open to the general public and the reception was by special invitation only. In order to be able to reach the general public the exhibition continued at The Manhattan Children’s Center (MCC) http://www.manhattanchildrenscenter.org/about.html MCC was honored to have participating artist Gregory Blackstock live at the exhibition. When the exhibition first opened and guests were slowly arriving Greg exclaimed “I am on a business trip. Where are all the people?” Greg is the author of Blackstock Collections and he was available for book signings while also striking up conversations with guests in English and other languages. In between conversations with guests Greg sat and drew various works (one of which he sold on the NYC subway to an admirer who noticed his work!) Gregory's drawings are often large, on several sheets of paper pieced together by Greg with tape and glue. Using pencil, crayon, ink and marker, Gregory depicts insects, baskets, aircraft, etc. with incredible precision of detail, straight lines and text. Greg’s work “Eggs” caused quite a stir while on exhibition at The United Nations. The curator was called several times to cover up certain “eggs” that were not “allowed” to be displayed at the UN for various reasons (such as the specific nation colors represented in the drawing NOT being part of the UN). If you look closely at the photos from the events you will note some “white spots or missing eggs” in the UN photos, but MCC guests were able to view this work of art as intended by the artist “no white spots”/ “no missing eggs”! On behalf of all of the attendees and the organizations involved, I would like to extend a warm and sincere “Thank you!” to all of the artists for enriching our lives with their contributions and for their support in funding autism research. To view photos of the opening events “WAAD – “Don’t ‘dis’ the ability 2008” go to http://www.RCMAutismNotebook.com Dr. Martinez is an Autism Spectrum Disorder educational consultant at The Children’s Center for Early Learning, and Co-leader of the Brooklyn Autism Speaks Walk Committee. She was the co-curator along with Dr. Laurence Becker of the “Don’t ‘dis’ the ability” savant exhibition tour in New York 2006. To contact Dr. Martinez: e-mail at RCMPHD1@verizon.net

by Nathan E. Ory, M.A. When individuals are "stuck" in a maladaptive behavior they are sometimes unable to make a transition or shift in response to any "external" effort. When "nothing works" to change a behavior it may be necessary to work with the individual by using what I call "following guidance." (Another way of saying this is to "go with the flow" and lead them into a more appropriate expression of what they are already doing.) This article suggests a number of questions you may ask to try to find an "opening" into their way of thinking. Use their own developmental repertoire to give you a lead. 1. What is the individual's developmental level? Some individuals may be unable to respond to approaches relevant to their chronological level. Factors to keep in mind include whether or not the child has a sense of "object permanence", their comprehension of "time", and their level of egocentricity or self-centeredness. Your approach has to be relevant to what you would expect to be a relevant approach to a typical child who is functioning at the same emotional and cognitive developmental level. 2. Is there any behavior in the individual's existing repertoire that is an acceptable alternative? Although their own repertoire of positive behaviors might be very small, the assignment is to make a list of everything the person ever does, either prompted or spontaneously that is an acceptable alternative to their maladaptive behavior of concern. Instead of trying to get the non-responsive person to respond to "no", "don't" and "stop", work on trying to get them to respond to "yes", "do" and "start" their own repertoire of positive behaviors. 3. Is there anything the individual would work hard to have or do? To begin with, this might be access to some maladaptive sensory behavior that you are trying to inhibit or stop. It may be possible to use access to this maladaptive behavior to motivate other, more positive behavior. This is called using the Premack Principle as a reinforcer, where the opportunity to do a highly likely behavior can be used to motivate a less likely behavior. For example: For one person who likes to sniff other's smelly feet, the opportunity to briefly do this was offered after the person allowed you to put smelly perfume on their hands. Eventually, asking others to put perfume on their hands was shaped into an alternative behavior to asking others to smell their feet. For example: For a person who engaged in masturbation while in public areas, the opportunity to do this was offered after the person accepted direction to a "private" place where they could do this "personal and private" behavior. For example: For one person who was an unsteady walker, he always "tugged" and pulled back when you took his hand, often pulling over his caregivers. The only place he did not "tug" was when holding onto the railing while climbing stairs. The solution was to always give him a tube-like handle to hold attached to the end of a short length of elastic stretch cord, held on the other end by his caregiver. This created a consistent level of resistance that he could use to keep himself walking. In these ways you "use" the socially inappropriate behavior to "teach" the person a more socially appropriate behavior. 4. Are there any circumstances where the individual does not display the behavior of concern? Is there anything that you can ever do that causes them to sometimes stop or shift the behavior, "on a dime?" If so, create more of these circumstances to "displace" the opportunity for the behavior of concern to occur. Work harder to keep the person supported in highly structured environments. © 2002, Nathan E. Ory, M.A. Registered Psychologist Challenging Behavior Analysis and Consultation challengingbehavior@shaw.ca

Many persons with autism will not attempt to do things unless they are certain that they know exactly what is expected, and that they can actually accomplish what is expected. They "lock in" on their "concrete" and "literal" interpretation of the "rules", as they understand these. Once they know how to do something they want to do this "perfectly". One youngster could only do his schoolwork in pencil or on the computer. There was major conflict with the school and behavioral "melt down" when he was required to use pen. With pen he could not turn in "perfect" work. This boy had to be able to correct his "errors". His parent insisted that the school accept pencil or provide him with access to computer to allow him to correct his work before turning this in. He was also given extra time to complete work to his own standard. Perfectionism may affect a child with autism in another manner. It is so difficult for some to understand how the "rules of the world" work, that once they recognize what to do, they may feel that they have to do everything that they know how to do. They try to do it all. One youngster is an excellent baseball player in many ways. He could catch, pitch and hit the ball hard. But when he was on the field he wanted to catch and field the ball and get the player out every time. When he couldn't accomplish this he "melted down". He was "failing" at the game of baseball. This was the end of his "competitive" ball career. He can still enjoy one-on-one catch and batting practice. Some children with autism can become very depressed when they are unable to "win" in social situations. One boy felt that he was playing life as a game and that the game was "rigged." The game needs to be rigged in this boy's favour. He needs to feel like those who are supporting him are in the game, on his side. How to support a person displaying perfectionist anxiety: Give the "answer key to life". Try to remember your grade 9 algebra, or grade 11 physics. Remember where we were given a text with the correct answers in the answer key at the back of the book. Without the key we might not have even attempted to do the difficult problems. With the answer key available we were confident that we would be able to correct our work if we made any simple mistakes, we were not anxious that we would look stupid, and we were certain that we would be able to get credit for our effort. These are pretty motivating circumstances that allow one to gear up, to put out the effort to do the difficult, new problems. Having the answers available did not make us too dependent, not even if we looked at the answer first to get an idea about how we might do the problem. We still had to show our work. Having the "answer key" served to clarify the end goal and allowed us to organize our effort. Having the answer key made us more efficient. (Did you ever have the experience of working all night on a problem and tearing out your hair because you couldn't get the same answer? Then the next day the teacher told you that the book had the wrong answer?) Apply the metaphor to your child: Metaphorically, think of a successful life for these "perfectionist" children with autism as being like an "open book, multiple-choice test". The secret is for caregiver to give the child exposure to the "answer key" before you challenge him to take the "test." Model the required actions. Demonstrate yourself or to another before requesting the child's participation. Metaphorically, caregiver should also open the book to the correct page and highlight the sentence where the child will find the correct answer. Give positive feedback to others for doing the correct actions. Then all your child has to do is to recognize that he already knows what to do to be correct, and may be willing to attempt action. Many children who live with autism are great at remembering what they have memorized. Try to make life into a series of pre-organized "tests". Give them the "answer key" and make life into an "open book" test. Application one: Solving social problems that are too full of conflict and ambiguous meanings. Write out every rule and every interaction. Have the child "study" this in the form of social stories and scripts. These "work" for many children and adults. Pre-rehearse the life script for successful interaction before each interaction. Make sure the child has rehearsed and can "pass" the test. Only then, engage the child in a manner that will allow him/her to call on his/her memorized, rehearsed, and externally generalized role to the immediate situation. For some children it may help to put each step of each interaction onto a 3x5 index card to assist them to memorize the sequence and get it into concrete format. Many of our children are very "smart"; they may be unable to figure out how to apply what they know. Solve these problems for them. Make life "goof proof." Where they are vulnerable to their own perfectionism, protect them by using these structured procedures so that they will be confident that they know what is expected of them. Application two: What to do when a person who is a perfectionist "freezes" and is unable to apply himself or herself. How to get them "unstuck". If the child does display autistic rituals, I recommend offering the child a suggestion to do something from their own ritualistic and sensory repertoire. They may be so ritualized that, if prompted with one of their own rituals, they may be likely to fall back into one of these. If they do so, they become "unfrozen." Using their own ritual may allow them a successful, "perfect" way to escape

By Sue Shellenbarger, The Wall Street Journal For years, David Bruesehoff hesitated to tell anyone at work about his daughter, Karissa, who has autism and Down syndrome. At his company and many others, "it's the 'culture of the smart,' " the Dallas father says. "It can be hard when another parent is talking about his child getting into prep school, and your child's big accomplishment is getting on the bus to go to school." A code of silence has long kept parents of children with disabilities, from autism and Down syndrome to cerebral palsy and depression, from talking about their kids at work. Now, driven by growth in their numbers and in the cost of raising special-needs children, some of these parents are starting to "come out" at work. And a handful of employers are stepping up to help, with support groups, informational meetings and insurance benefits. The incidence of U.S. children and teenagers with a disabling condition has tripled to 7 percent from 2 percent in 1960, based on data published in 2000 in the Archives of Pediatric and Adolescent Medicine, reflecting increased survival rates and a rise in the diagnosis of conditions such as autism. Today, an estimated one in 12 U.S. workers has a child with a disability or special need, says MassGeneral Hospital for Children, Boston, which is conducting a five-year, federally funded project to examine workplace supports for these parents. "Stigma and fear of reprisal" have kept many workers from disclosing their family situations, says Chris Fluet, director of the MassGeneral project. The risks of speaking up are real: Soon after Kevin McGarry, Hyde Park, N.Y., started asking questions about insurance coverage for his disabled daughter on a previous job as a paralegal in the mid-1990s, his supervisor got upset and told him to stop asking for benefits. "They didn't want my health insurance company to get wind" of the rare syndrome his daughter had from birth. Although his performance previously had drawn praise, he says he soon started getting negative feedback. Eventually he was laid off. Having a child with a disability also requires time and effort to find and manage treatment, forcing 30 percent of these parents to quit or cut back at work, says a 2001 survey by the federal Maternal and Child Health Bureau. Few parents can afford to cut back. More than 40 percent of families with special-needs kids have financial problems because of care costs, says a study published in June in Maternal and Child Health Journal. And 60 percent of children with special needs rely on their parents' employers for health insurance, MassGeneral says. Now, some parents are taking the opposite tack -- turning to the workplace for support. After her autistic son was born 11 years ago, Kathy Gonzalez, a technology manager at Toyota Motor Sales USA, Torrance, Calif., was overwhelmed trying to find treatment for him. Seeing her co-workers networking on other topics, she helped start a support group last year at Toyota that draws up to 40 parents of special-needs kids to its monthly meetings. "If I could help even one parent get on track for whatever service they need for their kid, it would be worth it," Ms. Gonzalez says. At Microsoft, employees with autistic children have formed a similar network. Jack Harris, whose 11-year-old son is autistic, was startled to learn during on-site meetings of a father's network at PricewaterhouseCoopers's Tampa, Fla., office, that 10 of the 50 other men there also had children with disabilities. With PricewaterhouseCoopers's blessing, Mr. Harris, a practice support manager, is planning an on-site special-needs resource fair early next year. The firm is looking for other ways to support such parents, a spokeswoman says. In recent years, Mr. Bruesehoff gradually began talking about his daughter on his job in Los Angeles for accounting firm Ernst & Young. Then, when he was offered a transfer to Dallas in 2002, "I decided I was just going to come clean" and explain that the availability of programs in Dallas for Karissa, now 17, would be pivotal. Co-workers responded warmly, helping his family forge new ties in Dallas, where he now works as a human-resource manager, he says. Mr. Bruesehoff is among 64 parents of special-needs kids who have joined a parent network formed last January by New York-based Ernst & Young. Sandra Turner, a human-resource manager, says parents on the network's informational conference calls are slowly opening up to each other. While fewer than one-fifth were willing to give their names on the first call, about half now feel comfortable identifying themselves. Raytheon, an aerospace and defense contractor, has hosted several speaker dinners for employees with special-needs children at its Tucson, Ariz., and Woburn, Mass., facilities. Jeff Stolz, whose son Joseph, 10, has autism and bipolar disorder, was among those attending. Heartened to learn many of his co-workers also had special-needs kids, Mr. Stolz for the first time took Joseph in April to the annual "Take Your Child to Work" day festivities at Raytheon. He was apprehensive; Joseph verged on a tantrum during an introductory session. But as the day wore on and supportive adults reached out to him, Joseph calmed down, and even introduced himself by microphone at the closing session. In a surprising move in today's cost-cutting climate, a few employers are even expanding insurance coverage for special-needs kids. Microsoft, oil-industry supplier Halliburton, and insurer Progressive Group have begun covering some of the cost of applied behavior analysis, or ABA therapy, intensive early training for autistic kids that can cost $20,000 or more. These employers, of course, are the exception. If you have a child with a disability, only you can size up your corporate culture. A MassGeneral manual offers tips and resources, available online at www.massgeneral.org/ebs by clicking on "Resources for Employees," then opening "workplace benefits."

A new brain-imaging study indicates that a specially designed program for second and third graders deficient in reading boosts their reading skills while prodding their brains to respond to written material in the same way that the brains of good readers do. The same investigation found that the remedial instruction typically offered to poor readers in the nation's schools doesn't improve their skills and fails to ignite activity in brain areas that have been linked to effective reading. "Good teaching can change the brain in a way that has the potential to benefit struggling readers," says pediatrician Sally Shaywitz of Yale University School of Medicine. At least one in five U.S. grade-schoolers with average or above-average intelligence encounters severe difficulties in learning to read, researchers estimate. In 2000, a panel of educators and scientists convened by Congress concluded that reading disability stems primarily from difficulties in recognizing the correspondence between speech sounds and letters. Panel member Sally Shaywitz, along with Bennett A. Shaywitz, a neurologist also at Yale medical school, and their colleagues used that finding to design a brain-imaging investigation. At the beginning and end of the school year, the investigators administered reading tests and functional magnetic resonance imaging scans to three groups of children, ages 6 to 9, attending school in New York or Connecticut. The brain scans were taken as each volunteer tried to identify written letters that matched spoken letters. In one of the groups, 37 underachieving readers were given experimental tutoring that consisted of 50 minutes of daily, individual instruction in letters and combinations of letters that represent speech sounds called phonemes. The lessons also focused on development of fluency in reading words, oral reading of stories, and spelling. Another 12 deficient readers received standard remedial reading and special education programs in their schools. These students didn't receive explicit instruction in learning to recognize how letters correspond to phonemes. A third group, this one consisting of 28 good readers, received regular classroom instruction. At the end of the school year, only poor readers in the experimental program showed marked gains in reading accuracy, speed, and comprehension, the researchers report in the May 1 Biological Psychiatry. Good readers still exhibited the strongest literacy, but the poor readers who receivedphonetically based instruction had closed the gap considerably. poor readers completed the experimental program, their brains displayed pronounced activity in several of the same left-brain areas that are active when good readers do reading-related tasks. In an earlier study of poor readers, Sally Shaywitz and Bennett Shaywitz found that one of those neural regions remains inactive as these kids grow up. Preliminary evidence from other researchers indicates that this structure, located near the back of the brain, fosters immediate recognition of familiar written words and is thus crucial for fluent reading, Sally Shaywitz says. Students who had completed the experimental tutoring program still displayed improved reading scores and associated left-brain activation when measured 1 year later. Bruce D. McCandliss, a neuroscientist at Weill Medical College of Cornell University in New York City, calls the new report a "landmark study." It builds upon similar findings by other research teams that tracked much smaller numbers of poor readers given phonological instruction, he notes. The Yale group now plans to study children who will be randomly assigned to different types of reading programs.

A Eugene, Oregon woman with autism has just been named a hero in the annual Volvo for Life Awards, and will be getting a check for $100,000. Lorraine Kerwood didn't let autism stop her as she channeled her passion for fixing computers into the non-profit operation, NextStep Recycling. According to the group's Web site, "NextStep Recycling is a non-profit computer refurbishing and recycling organization. We are dedicated to providing refurbished computer equipment to schools, non-profit organizations, and economically and/or physically disadvantaged individuals. In addition, we serve the community and the environment by recycling obsolete/nonrepairable donated electronic equipment. We are able to provide computers to the public by refurbishing used computer equipment for which businesses, corporations, and individual donors no longer have a use." The site has complete details on getting machines to and from NextStep. Its most-needed items include Pentium 3 or 4 computers, Macs that are G4 or above, cell phones, iPods, cords, cables and chargers. NextStep accepts single items or an entire pallet of recyclables. Kerwood says computers and other electronic items may last much longer than you think. Sometimes, all that's needed is a RAM upgrade or a bigger hard drive, and it's good to go. But, it's important to be timely with your donations: The longer your old electronics sit in your garage, the more difficult they are to refurbish. All computers refurbished by NextStep leave as complete systems with a complete software package NextStep says it goes above and beyond to protect your personal information: All systems are thoroughly checked to make sure personal data is erased or eliminated. A problem today is so that many people are concerned with identity theft, they're more interested in having their computers going straight to a shredder than recycled. But Kerwood NextStep is so careful, ID theft is a non-issue there. NextStep is also a source for some hard-to-find vintage and classic Macs and parts, as well as vintage PCs and parts. Feel free to e-mail its store directly for those unique items. NextStep also accepts financial donations.

By Shanley Stern Lisa Noke-Kearney may never be able to hear her son speak a full sentence or initiate a hug. But, through the pain of finding out her 4-year-old son Ryan was autistic, Noke-Kearney found what she believes is her purpose in life. Since the prognosis, Noke-Kearney, who grew up in Waltham and recently moved to Arlington, has been volunteering for the National Alliance for Autism Research, pitching in her time, thoughts and sweat to assist one of the only organizations which uses research to try to find a cure for autism. "This is the only thing I can do to help my son," Noke-Kearney said. "I always find it difficult, I never give up, but it never gets easier. Having to live with this every day without a lot of research motivated me to get involved. I feel I belong with this group because if I can't help Ryan directly, then maybe I could help people like him." This month it is especially important for Noke-Kearney and NAAR to get the word out about autism. April is Autism Awareness month and according to NAAR statistics, autism is on the rise. Only two years ago, one in every 500 babies were diagnosed with autism, now one in every 250 babies is autistic. There are few answers to what causes this complex brain disorder that inhibits the ability to communicate, respond to surroundings or form relationships with others. Some recent research suggests autism could be a genetic disorder, but nothing has been confirmed yet. There are no treatments, cures or even blood tests to diagnose autism. Diagnoses are made purely based on observation. "Despite increasing national interest in autism and strikingly high prevalence, autism research remains one of the lowest funded areas of research by both private and public sectors," according to a NAAR fact sheet. To look at the tall, blonde little boy running around the kitchen like a typical child, it's hard to see the severity of his disability. It's only when Ryan is thirsty, hungry, tired or feels any other emotion that the difficulties become evident. Although Ryan is considered a high functioning autistic child, he can say only a few words. But, those words don't come unless someone asks him to repeat after them. It takes only a little frustration for Ryan to start screaming -- and no one, including his mother can reach out to Ryan to give him a random hug or kiss. "He didn't seek out his mother, he didn't want to be held. I wanted my children to be able to play together. It's hard to see (his sister) Marissa wanting to play with him and he pushes her away. She doesn't understand why," Noke-Kearney said. "The whole goal is to get him to talk and he just doesn't. Every parent wants to communicate with their child and we just can't." Not that Ryan hasn't improved since his diagnosis. He attends a public elementary school in Medford and is in a special class. Ryan's teachers and his home trainer Megan McCubrey use a teaching method called Applied Behavioral Analysis to help Ryan learn. ABA breaks down a task and rewards the child for any small part of the task they complete. "Children with autism are very visual learners," McCubrey said. "The main goal is to get him to attend to a task." McCubrey is in the process of teaching Ryan to use a communication board which allows him to pull a drawn picture of something he needs and give it to someone who can help him. For example, if he is thirsty, he could take the picture for `drink' off the board and hand it to his mother. "He's at the very first stages of learning to use it," McCubrey said. There is no way for Ryan's parents to know what he will be capable of when he grows up. Some children improve; some do not. For Noke-Kearney, getting involved in NAAR is her only defense against the unknown. "I can't be with him forever. How is he going to function? We still don't know how these children are going to be when they grow up," Noke-Kearney said. Co-chairing the Greater Boston Walk For Autism Research in Brighton Sept. 20 is one way Noke-Kearney is contributing to help realize her goal of finding a cure for autism. Proceeds from the walk go directly toward funding autism research. Last year, 7,000 people participated in the event, raising $875,000 of which 83 cents of each dollar went directly to research. "Ryan was given to me for a reason -- to help other families. I feel this is what I was meant to do. Ultimately, I would like to see a cure in my lifetime," she said." For more information on autism or how to participate in the Greater Boston walk, call 1-888-627-6227 or logon to www.naar.org. http://groups.yahoo.com/group/-AuTeach/messages

Parents struggle to get services By Carey Goldberg A decade ago, it took a few months to get a child into Melmark New England, a special school largely for children with autism. Now, the wait can be five years. Boston-area parents, worried their child may be autistic, routinely face delays as long as nine months to confirm the diagnosis -- even though current wisdom holds that treatment should begin as early as possible. And LADDERS, a Wellesley autism clinic, has all but closed its doors to new patients: "We're backed up well over a year here, and other clinics are struggling the same way," said Dr. Margaret Bauman, its director. Statewide, the number of schoolchildren diagnosed with autism has nearly doubled over the last five years, from 4,080 to 7,521, according to soon-to-be-published data from the Department of Education. Massachusetts provides some of the best care in the nation for children with autism, but the increase is straining the system and forcing parents to fight harder than ever to get help. "Many people who haven't had the experience assume the hardest part is hearing your child has autism," said Ann Guay of Bedford, whose 12-year-old son, Brian, has the disorder. "But I think the greater challenge is trying to obtain the services you know your child desperately needs." Nationwide, federal health authorities say that about one in every 150 children now has some form of autism, a sharp increase over past estimates. The rates vary from state to state for unclear reasons; Massachusetts has now reached a total of 1 in every 130 schoolchildren. Advocates for children with autism point out that because autism tends to affect four times as many boys as girls, it appears that already more than 1 percent of Massachusetts school boys are "on the spectrum," which ranges from severe disability to lesser problems with communication and social interaction. Some debate lingers about whether the sharp rise in autism rates is real or simply reflects better detection, but for those in the autism world the question is moot: Whatever the reason, the reality is that more children need their services. "Autism programs are faced with enormous needs and no one feels like we have enough programs to meet the up-and-coming numbers of children," said Rita Gardner, executive director of Melmark, in Andover, which serves children in its school, in their homes, and in public schools. "I would argue that this is one of our biggest public health crises in this country." To keep pace, school systems and state agencies are rushing to open more programs, train more teachers, and hire more therapists to help autistic children. The Legislature is recognizing the need: Starting in fiscal year 2006, it gave the state Division on Autism its own line item in the budget, and in the pending budget, allocates $3.2 million to the division, up from $3 million in the last fiscal year. The Legislature also passed a law in 2005 to maximize federal reimbursement for autism services, which often include intensive one-on-one therapy at home for children as young as 1. But the whole system is visibly straining at the seams, from overworked clinic staffers and vacancies that go unfilled for months, to parents so desperate for help that they pick up stakes and move to towns whose school systems are reputed to have good autism programs. "People will naturally do anything for their kids, so one of the forms of intervention is 'real estate therapy,' " said Rafael Castro, an autism specialist at Children's Evaluation Center in Newton. He has seen families migrate to towns such as Marlborough, Acton, and Lexington that have built good autism programs, he said. A few years ago, when state public health authorities began providing autism services to children under 3, they expected about 500 children to enroll. At last count, they are serving more than 1,100. The 7,500 schoolchildren diagnosed with autism make up less than 5 percent of the 163,000 Massachusetts schoolchildren who receive special-education services. But at Massachusetts Advocates for Children, a nonprofit that helps children with special needs, autism has become a dominant concern. "I'd estimate that approximately a quarter to one-third of our intake calls are now from parents with children on the autism spectrum who are struggling to obtain appropriate educational services for their kids," said Julia Landau, director of the nonprofit's Autism Special-Education Legal Support Center. She and Guay, a former lawyer who volunteers there, say some of the greatest challenges face children from low-income families who must overcome barriers of language or of a culture that imposes such a stigma on autism that they try to keep the disability hidden. Psychologist Karen Levine, clinical director of autism at Cambridge Health Alliance, said autism clinics try to prioritize the youngest children and those who have yet to receive a solid diagnosis, seeing them within a month so they can begin receiving help as soon as possible. Bauman, of LADDERS, which is affiliated with Massachusetts General Hospital, noted that her clinic also squeezes in such cases. Mounting research has demonstrated that intensive early intervention with children on the autism spectrum can bring significant benefits. But the intensity of the therapy needed -- small children may receive up to 30 hours a week from the state -- can place heavy burdens on all concerned. Levine said she knows of many families embroiled in battles with their school systems for more services. Often, she said, the schools see the families as pushy, and the families see the schools as withholding. "Actually," she said, "it's a maxed-out system and legitimate needs."

Today, Thursday, Feb. 3, CBS's top-rated drama 'Without a Trace' (10:00-11:00 PM, ET/PT on the CBS Television Network) starring Anthony LaPaglia, Poppy Montgomery, Marianne Jean-Baptiste, Enrique Murciano and Eric Close, will feature a storyline in which the FBI team searches for a 12-year-old boy with autism who vanishes from a Manhattan museum while on a school field trip. In addition to being a very moving and accurate story that depicts a family with a child affected by autism, as well as some of the varied traits of the affected child, the actors who play the parents, Christine Tucci and Vincent Angell, are really married and are themselves the parents of a 3-year-old son with autism. According to Christine and Vincent, this is probably the most important role of their lives, considering their connection to the topic, and they applaud the writer of the episode for the accuracy of their portrayal.