Autistic Society

Autistic Society
Autistic Society
Autistic Society

Boy in a bubble
Scotland on Sunday By Catherine Deveney IMAGINE an unfamiliar world in which little is recognisable and you feel constantly frightened. Faces are impenetrable masks, the expressions on them both threatening yet devoid of specific meaning. You do not understand your position in this place you find yourself. You are a square peg in a round hole, constantly crammed into someone else's space that simply doesn't fit. The faces talk to you but their language is alien and you are frightened of misinterpreting their words. In fact, fear defines your world. You take comfort in ritual and repetition and scream when it is interrupted. Often you simply withdraw inside yourself to an internal world that contains only you. This was Dale Gardner's world. As a child he was severely autistic. He is 20 now and it is fascinating to sit in his house in Gourock listening to him describe a world he finally emerged from. Autism is a complex condition that affects roughly one in 110 people in Scotland – that's 45,000 – and causes sufferers to have difficulty with social and linguistic interaction. The symptoms and severity of the condition vary; some autistic people will never learn to speak, others will function relatively normally. But it is very rare for someone like Dale, who at one time couldn't talk to his parents or empathise with others, to be able to unzip the autistic brain, show you what's inside, then zip it up again. His descriptions are often very simple and to the point. "I would say," he says, "that autism is a disability that makes people scared at the wrong times." Two things prompted Dale's remarkable progress: the determination of his parents, Nuala and Jamie; and the help of a rather special dog called Henry. The story of how Henry helped bridge the gap between Dale's world and his parents' was first made into a film, After Thomas, starring Keeley Hawes, Ben Miles and Sheila Hancock, and Nuala later went on to tell the full story in her book, A Friend Like Henry. Now, she has taken things further. Dogs have long been used to help blind people and epilepsy sufferers. But she is working with Dogs for the Disabled to develop a full training course to reach autistic children. Results have been encouraging and she is now looking at the possibility of sourcing gun dogs. Research Autism is also carrying out its own systematic evaluation of dog programmes and Richard Mills, the charity's director, says there has been an improvement in the quality of life for both the children involved and their families. "We're not building up hopes that this is a cure for autism but we really think there's something worth looking at. And while some interventions for autism are extremely expensive, this isn't."
The 1950s concept of ‘refrigerator mothers’ and autism
Teaching Expertise This week I went to a well-attended, high-profile training course on autism. During the course I saw some fascinating old television footage of so-called ‘experts’ sharing their ideas and theories regarding autism. What caught my attention most was the term ‘refrigerator mothers’, which apparently was coined in 1950 to describe some mothers of autistic children. The term originates from a theory that autism may be related to a ‘genuine lack of maternal warmth’, which was published in 1949 by Leo Kanner when he was starting to investigate causes of autistic behaviour. However it was Dr Bruno Bettelheim, a University of Chicago professor and child development specialist, who facilitated the widespread acceptance of this notion in the 1950s and 1960s. Many articles and books published in that era attributed autism to a maternal lack of affection. I can understand how Kanner and Bettelheim came to the initial conclusions that autism was developmental in relation to the mother, bearing in mind Bowlby’s identification of Attachment Disorder, but I find it indefensible that these cases were paraded so publicly, especially when there were so few examples. The idea of ‘refrigerator mothers’ was widely spread with no real explanation or context, and subsequently turned these women into social outcasts. I am curious to look further into this early misdiagnosis from Kanner and Bettelheim; specifically how it affected notions of who people with autism were and what they presented at that point in time. Often errors help to frame modern thinking. However, can we truly accept Bettelheim’s work as a core part of developmental theories about autism? Click here to read other posts on this subject Teaching Expertise
Randolph charity brings autism education to China
Randolph Herald By Fred Hanson On their first trips to China in 1992, Helen and Karen McCabe met Zhang Ge, an 8-year-old girl with autism. Helen McCabe, an assistant professor of education at Hobart and William Smith Colleges in New York state, would frequently travel to China to do research, her sister Karen said. “Over the years, she kept meeting more kids with autism, and she realized they didn’t have any services for kids with autism or any disabilities,” Karen McCabe said. After years of talking about it, the sisters formed The Five Project 18 months ago. The purpose of the charity is to bring information about autism to families and educators in China as well as to help develop services for people with autism and other disabilities there. Karen McCabe said that, unlike the United States, there are few special education programs in China’s public schools. There are some private programs, which charge tuition. “A lot of them are doing the best they can with what they have, which isn’t a lot,” Karen McCabe said. Since both sisters speak Chinese, “we have an ability to help people that we wouldn’t have in other countries,” said Karen McCabe, who also works for the Randolph Community Partnership. Based for now at Karen McCabe’s Fitch Terrace home, the charity has translated some materials on autism, a developmental disability that impairs social interaction and communication, and distributed them in China. They’ve held workshops for parents and caregivers as well as teachers in Beijing and Nanjing, and have also formed a support groups for families of people with autism and another for young adults with mental illness and their families. Karen McCabe said they hope to raise enough money eventually to take other American experts in special education to China and allow Chinese educators to receive training in the United States. “It’s one thing for us to explain it,” Karen McCabe said. “It’s another thing for them to come over here and see it.” The Five Project gets its name from Zhang Ge’s love of the number. Now 24, she works shelving books in the the library of a community center in Nanjing. A yard sale to benefit the project will be held from 8 a.m. to 1 p.m. Saturday and 8 a.m. to 2 p.m. Sunday at 1 Priscilla Ave. in Scituate. The rain dates are the following weekend. More information is available at TheFiveProject
Emotion in the Autistic Brain
ALPA Music has a universal ability to tap into our deepest emotions but for children with autism spectrum disorders (ASD), understanding emotions is a very difficult task. Individuals with ASD particularly have trouble recognizing social emotions like facial expressions - a frown, a smirk, or a smile. This inability can rob a child from being able to communicate and socialize, and often leads to social isolation. In a study led by Istvan Molnar-Szakacs, PhD, a researcher at the UCLA Tennenbaum Center for the Biology of Creativity and funded by the GRAMMY Foundation Grant Program, music will be used as a tool to explore the ability of children with ASD to identify emotions in musical excerpts and facial expressions. "Music has long been known to touch autistic children," said Dr. Molnar-Szakacs. "Studies from the early days of autism research have already shown us that music provokes engagement and interest in kids with ASD. More recently, such things as musical memory and pitch abilities in children with ASD have been found to be as good as or better than in typically developing children." Also, he said, researchers have shown that because many children with ASD are naturally interested in music, they respond well to music-based therapy. But no one has ever done a study to see if the brains of children with ASD process musical emotions and social emotions in the same way that typically developing children do. In this study, Dr. Molnar-Szakacs will use "emotional music" to engage the brain regions involved in emotion processing. "Our hypothesis is that if we are able to engage the brain region involved in emotion processing using emotional music, this will open the doorway for teaching children with ASD to better recognize emotions in social stimuli, such as facial expressions." The overarching goal of the study, of course, is to gain insights about the causes of autism. Dr. Molnar-Szakacs will use neuroimaging functional magnetic resonance imaging, or fMRI to look at the brain activity of children with ASD, and compare them to the brains of typically developing kids, while both groups are engaged in identifying emotions from faces and musical excerpts. "The study should help us to better understand how the brain processes emotion in children with autism; that in turn will help us develop more optimal interventions. Importantly, this study will also help us promote the use of music as a powerful tool for studying brain functions from cognition to creativity." Approximately 15 children with ASD ranging from 10 to 13 years of age will participate in this study, which is being conducted under the auspices of The Help Group - UCLA Autism Research Alliance. The Alliance, directed by Elizabeth Laugeson, is a partnership between The Help Group and the UCLA Semel Institute for Neuroscience and Human Behavior, and is dedicated to enhancing and expanding research in autism spectrum disorders. The project also is in collaboration with Katie Overy, Co-Director of the Institute for Music in Human and Social Development at the University of Edinburgh, Scotland. "The hope, of course, is that this work will not only be of scientific value and interest, but most of all, that it will translate into real-life improvements in the quality of the children's lives," said Dr. Molnar-Szakacs.
Autism – An Evolutionary Consequence
RK MD My classmates and I were discussing something earlier this year in molecular biology regarding the future of medicine. Having the potential to customize and tweak our genomes such that future generations will possess characteristics we have naturally (and artificially) sculpted is a power that is arguably rewriting Genesis chapter 1. But I asked them, and now you, to consider something which many people already support – the theory of evolution. Yes, the “E’ word is one which routinely stirs up controversy, especially amongst religiously inclined groups. Personally, I support the theory (from my Hindu/agnostic outlook) for the evidence is relevant and substantial, so keep my biased perspective in mind as you read on. Also, realize that there is no evidence for this random musing, so interpret it as that and not a proposed case study or medical truth. So what’s the point of this entry? Well, let me consider one special example which is relatively common in society – autism. This “disorder” is estimated to have an occurrence of 1/166 children, though this statistic may be drastically inflated with many parents labeling their children as “autistic” at the first signs of academic difficulty, abnormal behavior, etc. Given that over the last 10,000 years, mankind’s brain has seemed to evolve far more than any other bodily structure, how do we know that what we currently label as autism is not simply a consequence of the brain taking the next step towards advancement? Crudely stated, there may be some glitches here and there in the new wiring plan, but over time, it might get worked out. We have documented cases of savants like Kim Peek and Daniel Tammet who possess extraordinary mental skills, but lack other skills which most “normal” humans feel anyone is capable of carrying out (dressing oneself, etc.) To me, it just seems like too much of a coincidence that we hear about autistic kids performing amazing feats but being labeled as children with a “disorder” in the same sentence. For example, Jason McElwain (some of you might know him as the “autistic basketball kid who shot six three pointers in four minutes”) was an inspiration to his peers when he was given a single chance to showcase his talent. Perhaps it was just a coincidence and a few grains of luck that aided him, but truth be told, if autism were really a mental disorder, I doubt that we’d hear so many stories like Peek’s, Tammet’s, or McElwain’s in a condition which occurs in well less than 1% of the population. I feel that if neurological conditions like autism truly reflect a biological attempt to advance, only time will tell if mankind will conquer the next plateau of mental ability. So what am I saying? If I had a child with autism, would I consider myself blessed? Unfortunately, this is where society far exceeds the control of evolution. The fundamental concepts of natural selection and evolution seem to fade away for mankind in light of our insatiable pursuit of wealth and power while simultaneously label the “weaknesses” of others. The unfortunate truth is that autistic children are different, and therefore forever labeled by society as such. Assimilation becomes a very difficult task, and without that, it becomes virtually impossible to thrive in a world which is ever so cruel to change. So for the sake of my child’s well-being in this world, I hope he/she would be “normal” (according to society’s definition). The sad truth is… this might conflict with nature’s attempt to progress.
Legos: building blocks in autism therapy
OCRegister By MARIE MCCULLOUGH VOORHEES, N.J. The Lego raft carrying the Lego castaways approached the Lego island, "chased by raptors." Lewis Roberts, a 12-year-old from Medford, N.J., moved the raft an inch, then another young filmmaker snapped a digital camera. A third boy consulted their script. "Quiet on the set!" In the sudden silence, the boys let out a raptor-like "ROAR." Lego animation is like a cartoon. The illusion of movement is created with a sequence of slightly different photographs of the colorful plastic brick construction sets. But this wasn't just fun and games. It was "Dr. Dan's Lego-based Social Development Therapy" — one of the many interventions that have been developed to teach social skills to children with autism. The eight preadolescent boys who gathered one evening recently in the playroom at the Center for Neurological and Neurodevelopmental Health in Voorhees, N.J., have been diagnosed with some form of the mysterious malady. Their weekly hour together under the watchful guidance of three trained adult leaders helps them learn to interact and communicate socially — crucial abilities that are, by definition, impaired by the neurological disorder. "They're willing to be social creatures — as long as they can get this Lego thing built," said the aptly named Daniel "Dr. Dan" Legoff, the center's pediatric neuropsychologist. Early intervention helps At first glance, the $45 session just looked like a bunch of boys having fun, not surprising since Lego Club members have good language skills and average or above-average intelligence. In contrast, children at the severe end of the autism spectrum may be mute and have catatonic behaviors. But signs of problems were soon evident. A boy wearing a long-sleeve T-shirt stood amid the hubbub, staring at the floor, obsessively pulling the hem of his shirt – until leader Greg Shugar gently drew him into an activity. At a table, Lily Brown, another leader, helped two boys revise their "script" – a sheet of lined paper covered with angry scratch-outs and scribbles. Jonathan Shanahan, 13, of Riverton, N.J., rocked from foot to foot and acknowledged that earlier that day, in school, he threw a pencil at a classmate. "He's my archrival," Jonathan declared, holding a winged Lego beast he had created. Autism is a heartbreaking puzzle. The cause is unknown, although theories abound and genetics seem to play a role. The incidence of autism has increased dramatically over the last few decades, yet no one knows whether this reflects greater awareness and improved diagnosis, or environmental changes, or both. The encouraging thing, said Mark Mintz, president and founder of the center where the boys were gathered, is that early intervention usually helps: "You can change the developmental biology." The surest way of doing that is unclear. Countless approaches, techniques and medications – not to mention alternative therapies, special diets and vitamin injections – are available. Few have been subjected to rigorous studies of effectiveness. In Legoff's opinion, too many popular strategies involve "skillstreaming" – systematically explaining, modeling, and role-playing acceptable social skills to children. "I found that approach to be, first, boring and painful to go through for the kids. And second, it didn't seem to work," said the psychologist, who has treated children with neurological disabilities for 20 years. "I needed to find something that they could practice but that they would enjoy and be motivated to do." Birth of a club About 15 years ago, during post-doctoral training in Honolulu, Legoff noticed that his autistic patients, most of them boys, ignored a playroom full of toys – except for Legos. A hallmark of autism is an obsessive dedication to one or two interests or activities – typically involving taxonomies, mechanical systems, hierarchies. "A couple kids came with Lego creations they made at home," Legoff recalled. "In the waiting room, these kids started talking to one another, which surprised their parents. These are kids that don't have any friends because they're socially rejected or isolated." Thus was born the Lego Club. To force communication and collaboration, Legoff assigned rotating roles. The "engineer's" design had to be acceptable to the "builder," who had to get parts from the "supplier." Jonathan's year-old group, one of eight at the center in Voorhees, has reached the club's premier level – "master builder" – so now members devote their sessions to producing stop-action videos. These are shown at the Lego Club's annual "film festival," attended by adoring fans (relatives). "I feel bringing Lewis here has brought him out of himself," said Karen Roberts, mother of one of the filmmakers. "He's loved Legos since he was a tiny kid. But before this, he didn't really socialize a lot." Lynda Shanahan, Jonathan's mother, said: "I wouldn't say he has dramatically changed since coming here. The diagnosis is like layers: Peel away one problem and another comes up. But I have seen growth. This has helped him get a group of friends where he fits in. It's built his self-esteem." Newport Beach clinical child psychologist Kristen Iverson uses Legos to work on communication and social skills with her patients with autism. For younger children who need to learn conversational skills, she plays a game that uses Legos as cues for asking questions and sticking with a topic. "I think it's interesting to use something that motivates them as a way to get them to engage in things that are less motivating, which is learning new social skills," she said. "It results in them having a good time at the same time as they're learning new skills." Getting results Legoff – who says he's tried and utterly failed to get freebies from the Lego company – has made modest efforts to popularize his therapy. He has published two studies of its effectiveness in medical journals. He has given presentations to several school districts. And he has done collaborative research on the methodology with Simon Baron-Cohen, a distinguished psychologist at Cambridge University's Autism Research Centre in England. In a small study submitted for journal publication, Baron-Cohen and colleagues found Lego therapy more effective than a better-known social skills intervention at reducing autistic behavior. It also was better at improving social interaction on the playground, apart from the therapy group. "If these findings remain positive (in larger studies), then these approaches could be used in schools and clinic settings to make them widely accessible," the study concluded. Yet Lego therapy hasn't really caught on, for several reasons. It's more difficult and expensive to do than it may look. It's not suitable for severely autistic children. And it's not based on any particular theory of what is wrong in the autistic brain. "Because it evolved a-theoretically, it doesn't fit a particular theoretical framework. A lot of professionals don't like that," Legoff said. Even Bancroft Neurohealth, a Haddonfield, N.J., treatment organization where Legoff used to work, no longer offers Lego therapy, said Matthew Sharp, principal of Bancroft Elementary and Preschool. But Sharp tells families about it and refers them to the Voorhees center. "I think it allows socialization in a unique way," Sharp said. "And when a child has a birthday, now he has friends to invite back to the house, or to a movie night. So all these cool things can emerge from this group."
Mental health authorities 'no help to autistic teens'
Adelaidenow By ANDREW DOWDELL SUICIDAL autistic teens are locked up in detention centres or released unsupervised because the system does not regard them as mentally disabled, a court has heard. Coroner Mark Johns today opened an inquest into the hanging death of 18-year old Asperger's Syndrome sufferer Rowan Wheaton, who died at a residential care facility in April, 2006. His father, Simon Wheaton, yesterday told the court he was staggered to find out that the health system did not regard autism sufferers as disabled. "In South Australia if you are only diagnosed with Autism Spectrum Disorder you are not regarded as having a mental disability and therefore you are excluded from funding and access to organisations," Mr Wheaton said. Mr Wheaton said the family waged a lengthy and frustrating battle to obtain care for their son as his obsessive and suicidal behaviour worsened in early 2005. "We were worried for Rowan's own safety and for the safety of others ... I didn't want to see another Port Arthur massacre situation occurring," Mr Wheaton said. "We took him to Flinders Medical Centre because we weren't aware of any facility for autistic people in this state and it turned out we were right, there was none," he said. After a lengthy battle with red tape, the Wheatons negotiated a spot for their son in a secure ward at the Women's and Children's Hospital - but said staff were resentful about his presence. "We were threatened on more than one occasion that Rowan would be thrown out on the street if we didn't come and pick him up," Mr Wheaton said. "It was a blackmail situation, but we were aware of other situations where they actually did it. It wasn't just a bluff." Mr Wheaton said he met numerous other families who had suffered "terrible experiences" in trying to get help. "Other parents had had their children placed into juvenile detention, not because they should have been there but because there was nowhere else to go," Mr Wheaton said. In late 2005, Rowan was admitted to a residential care facility at Christies Beach, run by an organisation known as Southern Youth Junction. The teenager hanged himself with a sock at the home on April 21, 2006, after his release from six weeks on suicide watch in the Flinders Medical Centre. Mr Wheaton said he had been worried that the single carer employed at the home would not be able to properly monitor his son. "To this day, I regret being too worn out to have kicked up sufficient fuss to have something done before it was too late," Mr Wheaton said. Mr Wheaton said carers for autistic people were underpaid and often worked outside hours to help their clients. The inquest is continuing.
Local women start autism school
The News Herald By Donna Vavala When Cindy Bacot's son, Nicholas, was diagnosed with autism in 2000, she could not help but get interested in the disability that makes it very difficult for those afflicted to learn. Bacot (pronounced BAY-co) decided she wanted to start a school devoted to reaching children with autism spectrum disorder and other developmental delays. "The time was never right until 1½ years ago," Bacot said. "It took me that long to find the right location and put teachers in place." The freestanding building that will be used for the academy is in Lynn Haven, on the corner of 12th Street and State 77. It will open in August and follow the public school calendar. The exterior of the building belies its 2,600 square feet of space. There are 10 rooms, three restrooms, a kitchen and two offices. The best part is that the owner, who does not wish to be identified, has leased the building to the academy for five years for free and will offer an option to buy after that. "It used to be a beauty salon," Bacot said, indicating the long cabinet along one wall that used to be beauty stations. Now, the counter holds computers. The small classrooms have hand-painted murals featuring jungle scenes, and Bacot is hanging wallpaper with an underwater theme in the main room. Walls are being painted, carpets are being cleaned and a fenced playground is planned for a portion of the parking lot behind the building. The renovations are coming from the school owners' pockets, and they're doing the work themselves. "It's a labor of love," Bacot said. Bacot, who is a social worker, partnered with Susan Thomas, who has taught in public schools for 30 years, and has a master's degree in mental health counseling. They hired three teachers and plan to cap enrollment at 10 children in grades one through seven. Bacot said she wants to keep the teacher-student ratio low for ultimate learning. "Every student that comes in will have an assessment done to determine their current skills," she said. "We will use the applied behavior analysis, which is the only scientifically approved educational treatment for autistic children. It addresses education, social skills and functional skills. The higher-functioning kids will have access to computers." The academy also will utilize Switched on Schoolhouse programs, which offer three-dimensional multimedia video clips to capture the children's attention. "The best thing about it is, the program won't let them move on until they have mastered a program," Bacot said. "Our whole mission is to give the children the skills they need to go back into the classroom. We don't want to keep these kids long-term." The academy will provide speech, occupational therapy and other services through local agencies. Tuition is set at $15,000 a year, which Bacot said is the average amount the state's McKay Scholarships are worth that fund tuition for special education students. The school is in the process of ob-taining a 501(C)3 status, and Bacot said she wants to get the school accredited. A commercial-size van will be available to take students on field trips to places such as the Junior Museum, Gulf World, local parks and the mall, where they will learn how to purchase items and make change. Bacot said fundraisers will be held to finance the trips. Although public schools offer autism programs, Bacot said she believes there will be a demand for her school's services. "I've already gotten an e-mail and a zillion phone calls, so I really think we're going to have a waiting list before you know it," Bacot said. Bacot is happy her son, now 12, will be a student at her school, but she said he has mixed feelings about it. "He said, ‘Mom, I don't think it's a good idea to spend so much time together,'" Bacot said. Learn more For more information or to register at Bacot Academy, call Cindy Bacot at 248-1118.
Autism charity disappointed with latest Households Below Average Income (HBAI)
24dash TreeHouse, the national charity for autism education, welcomes the focus in two reports out this week on children with disabilities and child poverty. However, the charity is disappointed that the figures show much more needs to be done in order to tackle these issues for good. Both the Households Below Average Income (HBAI) statistics and the UK Childrens Commissioners Report to the UN Committee on the Rights of the Child have shown that eradicating child poverty, including the severe poverty often faced by children with disabilities, is still a long way off.
Finding support by supporting others
Tulsa World By SHANNON MUCHMORE A new support group helps adults who have Asperger's. For many people, walking into a cafe and ordering a cup of coffee or a bite to eat is a run-of-the-mill event. For a person with Asperger's Syndrome, however, it can be a daunting task wrought with frustration and stress. Asperger's is a disorder along the autism spectrum. It is characterized by repetitive patterns and other behaviors that obstruct social and occupational aspects of life but does not include significant delay in cognitive development. People with Asperger's who want a cup of coffee might be intimidated by all the options available, stressed by the lighting and noise in a restaurant, and unable to understand that they are being rude to a waiter or other patrons. After recognizing a growing need in the Tulsa community for Asperger's resources, the Tulsa Advocates for Rights of Citizens with developmental disabilities, or TARC, created Links, a support group for adults with Asperger's. It started monthly meetings in March and recently expanded the meetings to include a practice section at a restaurant in south Tulsa. Amanda Turner, director of communications for TARC, said the advocacy organization already has a support group for adolescents with Asperger's but had received several phone calls from people who wanted such a group for adults. "There was just such a need, and there's no group like it right now that deals specifically with Asperger's," Turner said. At the first few meetings, the group discussed tips on how to find an apartment, such as what questions to ask and where to look for listings, said Amie Farinella, self-advocacy coordinator for TARC and the group's organizer. They also have done some role-playing in preparation for their restaurant visit. Some members pretend to be waiters and others play the role of customers. They discuss ordering, tipping and politely sending back meals. A lot of time they simply sit in a circle and chat, Farinella said. "It's a very casual atmosphere," she said. "I don't try to make it structured at all." She lets group members drive the topics and discussions and encourages them to talk to each other and stay in touch outside the group. "That environment fosters them to gain more skills and start to do things on their own," she said. Turner said between 10 and 20 people have attended the first meetings, an encouraging number for a new group. They vary in how they are affected by Asperger's. Some live with their parents and do not drive, while others have more independence. Their IQs often are above average, but they have trouble with social skills. Farinella said a person with Asperger's always will be afflicted but can learn to manage the syndrome. "You can definitely help somebody be more comfortable," she said. Those who have found and attended the support group's meetings want to improve and make friends. They desire social acceptance like anyone else, Farinella said. "They want to learn how to do this stuff," she said.

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