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GRASP Newsletter September 2013

                                            Newsletter September 2013 It’s September. School’s begun. The weather is cooling down. Here at GRASP we again have several interesting articles to bring your way.  In This Issue Overcoming Asperger’s: Becoming a Student Leader Young People With Autism Find Work Through Job Training Program We need to know and do more about ageing with autism Rising Tide Car Wash in Parkland, Florida hires mostly adults with autism Far from Being Harmless, the Effects of Bullying Last Long Into Adulthood Autism Affects Different Parts of the Brain in Women and Men Study Finds ‘Different’ Brain In Some With Autism Autistic Children Can Outgrow Difficulty Understanding Visual Cues and Sounds Study aims to capture autism's transition into adulthood My Marvelous Journey with Incredible Savants: What Have I Learned? Yvona FastSupport Groups ManagerGRASPThe Global and Regional Asperger Syndrome Partnership, Inc.666 Broadway, Suite 825New York, NY 10012p + f = 1.888.474.7277 (1.888.47.GRASP)info@grasp.orgwww.grasp.org Help GRASP make a difference. Donate now by clicking the link below:http://www.nycharities.org/donate/charitydonate.asp?ID=2223 Overcoming Asperger's, Becoming a Student LeaderGrad Turned Adversity into Successby Erin AlbaneseKent ISD, MI — Gage Schell led tours of the Informational Technology program at Kent Career Tech Center, articulately explaining the program to adult visitors. He served on the KCTC Leadership Team and taught as a volunteer instructor in digital animation and design for a Ferris State University program.So it's hard to imagine that just a few years ago, Gage avoided social situations and found everyday conversations a huge challenge. “I’m starting to be able to open up and connect with people more than I ever used to,” he said.Gage, 18, has Asperger’s syndrome, a disorder that falls on the high-functioning end of the autism spectrum. Children with Asperger’s typically have trouble with social interaction, don’t understand social cues, and often become obsessed with specific interests.But Gage has come a long way. He graduated this spring from Forest Hills Central High School, completed the two-year Informational Technology program at KCTC and is headed to Davenport University.While at KCTC, he fine-tuned his self-taught computer knowledge, built PCs and even created Xbox games. He plans to major in business simulation and computer gaming and eventually become a computer programmer.Not one to display strong emotions or excitement, he looks pragmatically at the challenges he has overcome and at where he is headed.“I still have a lot to do,” he said.But mom Ramona Kiley feels enough excitement for both of them. She worried while her son struggled, and wondered about his future. While he was always very intelligent-- he disassembled his bed at age 2 and preferred studying health manuals to toys-- a lot remained uncertain.She then watched him blossom in eighth and ninth grade, when he learned to control many of the Asperger’s behaviors, and she was thrilled to see him excel at KCTC.Singularly focusedGage knows his stuff: computers have been his passion since early childhood, when the electronic world served as an outlet, a place to de-stress. He understands how they work, quickly comprehending the technical language and coding.But in school, anxiety caused him to have physical ticks, throat clearing and shoulder shrugging that led to even more problems socially. He also often blurted out things in class and was upset when other children didn’t follow the rules.“The doctor said not to take away his computer because that was his release,” Kiley said.Gage was diagnosed with Asperger’s in second grade, after teachers noticed behaviors that concerned them. Kiley said she had never heard of the disorder, but thought her son had Attention Deficit Disorder. Gage showed extreme interest in golf, coins and paper airplanes, but dismissed other things that fell outside those interests. Gage said he began to make huge steps socially when he learned how to look at his own behaviors like a third-party observer and consider how to react appropriately in certain situations. Self- awareness was the key, he said.Kiley said the Forest Hills Central autism program and KCTC made huge impacts on Gage’s progress.       “When he got into the autism program it was like a weight was lifted off our shoulders,” she said. “I don’t know where we would be today if Gage had not.”       Then at KCTC, Gage met students with similar interests and he was chosen for the Leadership Team, a role he didn’t take lightly. He knew he had to step up and learn to connect with others, even speak publicly. There were responsibilities he wouldn’t have taken on without the extra push, he said. He also made a best friend and took a girl to the prom, both big milestones.“He did a fantastic job,” said networking and computer repair teacher Cheri Hanson. “He grew so much at KCTC. We all are very proud of him.”Hanson said Gage does what needs to be done. “Gage really enjoys a challenge,” he said. “His motivation was strong and he just lived up to everything we asked him to do.”Asperger’s as a strengthIn the 21st century world of rapidly evolving technology, his knowledge is golden. “I think Gage is actually using Asperger’s as an asset instead of a hindrance,” said Kiley.Gage has indeed learned to channel the disorder for the positive, which allows him to finish projects while remaining completely focused for days at a time. He recently won the regional Skills USA competition in the PC maintenance competition, winning $1,500 for college.“I wouldn’t be where I am without it,” he said.Gage also never gives up. If he sets a goal he reaches it, Kiley said. Kiley has no doubt he will have the job he wants. He’s also always stuck to convictions he’s had since he was young, like never experimenting with drugs.       “Whatever Gage’s plan is, he doesn’t veer from it.Kiley sees Gage as an inspiration. “I think your story can give a lot of kids and parents hope,” she told him.The struggles many children with Asperger’s and autism are the same challenges Gage had, Kiley said. “There is light at the end of the tunnel,” she said.Submitted on: August 22nd 2013http://www.schoolnewsnetwork.org/news/?rID=1328 Young People With Autism Find Work Through Job Training ProgramSmall study saw 87 percent employment rate for participantsJuly 31, 2013WEDNESDAY, July 31 (HealthDay News) -- Intensive job training helps young people with autism get work, a small new study found.Autism is a neurodevelopmental disorder that can range from mild to severe, affecting social and communication skills. About 80 percent of 18- to 22-year-olds with an autism spectrum disorder are unemployed after leaving school, according to the researchers.But in a study of 40 young people with autism, the employment rate was 87 percent among the 24 participants who completed nine months of intensive internship training at hospitals as part of a program called "Project SEARCH with Autism Supports."The jobs in areas such as cardiac care, wellness, ambulatory surgery and pediatric intensive care units are not typically considered for people with disabilities. The study participants worked 20 to 40 hours a week and were paid 24 percent more than the minimum wage.The participants required less intense support as they became more competent at their work tasks, according to the findings published online in the July Journal of Autism and Developmental Disorders."This is the first study of its kind to demonstrate the skills and abilities youth with [autism spectrum disorders] have and the success they can experience at work," principal investigator Paul Wehman, a professor of physical medicine and rehabilitation, and director of the autism center at the Virginia Commonwealth University School of Education, said in a journal news release."Previous research in this area showed that youth with [autism spectrum disorders] were employed at lower rates than even their peers with other disabilities," he noted."Getting a job is the central accomplishment in life for all 20-year-olds," study co-investigator Carol Schall, director of technical assistance for the VCU autism center and Virginia Autism Resource Center, said in the news release."For far too long, youth with [autism spectrum disorders] have been left out of that elated feeling that adults have when they get their first real employment. Through this study, we were able to demonstrate that youth with [autism] can be successful employees," Schall said.The U.S. National Institute of Neurological Disorders and Stroke has more about autism.Source: http://health.usnews.com/health-news/news/articles/2013/07/31/young-people-with-autism-find-work-through-job-training-program We need to know and do more about ageing with autismFrom health issues to housing, growing older with autism brings unique challenges that haven't been addressed by policymakersSaba SalmanGuardian Professional, Thursday 15 August 2013Timothy Baron was among the first children in the UK to be diagnosed with autism just over 50 years ago. Timothy was in need of specialist education but autistic children then had no right to schooling, so his father, Michael, opened his own school, the movement became the Society for Autistic Children – now the National Autistic Society (NAS).  That was the 1960s; today, Timothy, who lives in residential care, is nearing 60. The first generation of children to be diagnosed with autism is now moving into older age. Ageing with autism brings not only the particular challenges of the condition – communication, social interaction or sensory issues – but the social, physical and mental health issues often experienced in old age.  Policymakers are aware of the impact on society of the ageing population, but the same focus has not been given to people with learning disabilities and autism.  Likewise, while there is growing awareness of the health inequalities facing people with learning disabilities, this is not specifically focused on older people with learning disabilities.  For Michael Baron, an 84-year-old widower, there is a pressing need to know his son will be properly supported in the future. He worries that Timothy and his peers, he says, are "an invisible population".  There are no specific UK figures for the number of older adults with autism (a reflection of how far down the radar the autism and ageing issue is). However, the number of adults with learning disabilities in England over the age of 65 is predicted to double in the next two decades, according to the Foundation for People with Learning Disabilities. There are currently an estimated 1.5 million learning disabled people in the UK; the real figure, including the undiagnosed, may be far higher.  "We need more research about ageing issues and autism," says Baron, "and a focus on transition from adult to older age. This first generation of diagnosed children are all middle-aged and their parents won't be around forever."  Caroline Hattersley, NAS head of information, advice and advocacy, says that government, councils and social care providers must grasp the challenge of ageing with autism. If not, "people will become more socially isolated, experience greater health issues and families will struggle to support them".  While individual UK providers support adults with autism as they age, there are no widely accepted good practice models or strategy on the issue. The Autism Act and national strategy do not focus on ageing while councils lack any precedent for services for elderly autistic communities.  In response, the NAS launched its Autism in Maturity research project last year and a commission on autism and ageing. The combined work of both will gather and spread information to professionals and explore what changes are needed to ensure that people get the right support as they age. Last month it published a report into the lack of support for older people with autism.  One of the projects the NAS refers to as good practice is Denmark's Hinnerup Kollegiet (college) which provides autism-specific residential care. The scheme, based in a small town in central Denmark, not only already supports older people with autism, it is creating new homes to accommodate them as they age further. The aim is to support not only their needs as people with autism, such as anxiety and sensory problems, but the challenges of ageing like lack of mobility and ill-health.  Hinnerup is widely regarded as good practice across Europe. It is championed as such by Autism Europe, an umbrella organisation for autism organisations, which estimates that despite there being around 3.3 million autistic people in the European Union, most countries lack autism-specific housing and services for older people.  Heidi Thamestrup, vice-president of the Danish Autism Association, explains: "The Hinnerup philosophy encourages an understanding that people with disabilities are also human beings; their needs can be different to ours but they have hopes and dreams and they need help to make them come true."  Many of the residents have been there since they were young adults, and as they aged, staff noticed the gaps in provision. For example, the care is autism-specific so two homes for older residents contain eight apartments built with four separate entrances, giving people access to their own space without going through common areas, but there is easy access to other residents and staff.  However, there are no adapted bathrooms or enough space in bedrooms for wheelchair access. So to avoid residents having to move to a nursing home or a hospital – move or change can be unsettling for people with autism – Hinnerup is building four new homes to accommodate these needs. "Hinnerup is trying to make some new types of housing so people will never have to move, even if they are confined to their bed," says Thamestrup.  The housing is a massive project, but other, simpler steps, also support the notion of Hinnerup's ageing population. All residents, for example, have health checks with the doctor at least once a year – at a scheduled date they can plan for – in order to detect age-related illnesses, and so they become familiar with doctor visits.  Hattersley praises the model as good practice, yet stresses that there is much the UK can do without having to build new projects. Partly, she says, it is about raising awareness: "When older adults have to move to hospital or hospice or a more specialist geriatric support service with medical staff, local authorities' policies are often 'we're going to move you move in a week'. Sometimes there's no choice but to do a quick transition, but for our client group, which has been in the same environment for most of their adult life, transition is a huge challenge."  Hattersley adds that professionals "who understand ageing might not have an understanding of autism … conversely, professionals working in autism don't necessarily have knowledge of ageing". As well as more focus on transition from middle to older age, she suggests autism awareness training in older people's services. The NAS is creating training resources for professionals about ageing which will be complete later this year.  For Michael Baron, there is also the hope that, properly supported, people with autism will continue to release their potential. "People can go on learning." He tells the recent story about Timothy who, after weeks of music therapy sessions, suddenly went over to the piano and began playing. "He'd never done that before –he's a 56-year-old man, but he's still learning." http://www.theguardian.com/social-care-network/2013/aug/15/ageing-with-autism-know-more Rising Tide Car Wash in Parkland, Florida hires mostly adults with autismBy: Evan Axelbank There's a reason Brandon Rogers takes a bus and a bike to get to his destination everydayFor victories."I have responsibility now. People can rely on me," says Rogers.Rogers' case of autism makes interaction a challenge.Until Rising Tide Car Wash in Parkland, Florida opened in April, he was in the 81 percent of adults without a job, according to the LA-based Center for Autism and Related Disorders.After two years of unemployment, he is now greeting customers."I feel better about myself.  More confident. I can speak to people more easily, " says Rogers.At Rising Tide, 37 of the 45 workers are adults with mostly high-functioning autism."We as a society look at autism as a disability that requires sympathy, instead of a diversity that can be valuable in the workplace," said Tom D'Eri, the co-founder of Rising Tide.D'Eri started Rising Tide after he saw his brother, who has autism, struggle to enter the mainstream."There have been some great businesses out there that do employ people with autism. But there has yet to be a brand that consumers can recognize that is about autism empowerment. That's what we want to be," said D'Eri.Rogers says the daily work has behavioral problems largely behind him.Now college is on his radar."I said look, I was doing the wrong things. I  see it this way, now I can do it this way, make more friends and be better in school," said D'Eri.They only opened four months ago, but two of the adults who work here are about ready to be promoted to manager.Read more: http://www.wptv.com/dpp/news/region_c_palm_beach_county/west_palm_beach/brandon-rogers-car-wash-hires-mostly-adults-with-autism#ixzz2dP7nwWmb  Far from Being Harmless, the Effects of Bullying Last Long Into Adulthood Science News... from universities, journals, and other research organizations Aug. 19, 2013 — A new study has shown that serious illness, struggling to hold down a regular job and poor social relationships are just some of the adverse outcomes in adulthood faced by those exposed to bullying in childhood. It has long been acknowledged that bullying at a young age presents a problem for schools, parents and public policy makers alike. Though children spend more time with their peers than their parents, there is relatively little work done on understanding the impact of these interactions on their life beyond school. The results of this research, published in Psychological Science, highlight the extent of which the risk of health, wealth and social problems is heightened by exposure to bullying; and in doing so is the first study to look into the effects beyond just health. Professor Dieter Wolke of the University of Warwick and Dr William E. Copeland of Duke University Medical Center led the team, looking beyond the study of victims and investigating the impact on all those effected; the victims, the bullies themselves, and those who fall into both categories; 'bully-victims'. Professor Wolke said, "We cannot continue to dismiss bullying as a harmless, almost inevitable, part of growing up. We need to change this mindset and acknowledge this as a serious problem for both the individual and the country as a whole; the effects are long-lasting and significant." The 'bully-victims' presented the most significant health risk for adulthood, being over six times more likely to be diagnosed with a serious illness, smoke regularly or develop a psychiatric disorder. The results show that bully-victims are perhaps the most vulnerable group of all. This group may turn to bullying after being victims of bullying themselves as they lack the emotional regulation, or the support, required to cope with it. Professor Wolke added, "In the case of bully-victims, it shows how bullying can spread when left untreated. Some interventions are already available in schools but new tools are needed to help health professionals to identify, monitor and deal with the ill-effects of bullying. The challenge we face now is committing the time and resource to these interventions to try and put an end to bullying." All of the groups were more than twice as likely to have difficulty in keeping a job, or commit to saving, and as such displayed a higher propensity for being impoverished in young adulthood. However, very few ill effects of being the bully were found in the study. When accounting for the influence of childhood psychiatric problems and family hardships, which were prevalent in the bullies, it showed that the act of bullying itself didn't have a negative impact upon adulthood. "Bullies appear to be children with a prevailing antisocial tendency who know how to get under the skin of others, with bully-victims taking the role of their helpers," explained Professor Wolke. "It is important to finds ways of removing the need for these children to bully others and in doing so; protect the many children suffering at the hand of bullies as they are the ones who are hindered later in life." Though there was no real difference in the likelihood of being married or having children, all groups showed signs of having difficulty forming social relationships, particularly when it came to maintaining long term friendships or good ties with parents in adulthood. The research assessed 1,420 participants four to six times between the ages of 9 and 16 years and adult outcomes between 24-26 years of age. http://www.sciencedaily.com/releases/2013/08/130819102708.htm Autism Affects Different Parts of the Brain in Women and MenAug. 9, 2013 — Autism affects different parts of the brain in females with autism than males with autism, a new study reveals. The research is published today in the journal Brain as an open-access article.Scientists at the Autism Research Centre at the University of Cambridge used magnetic resonance imaging to examine whether autism affects the brain of males and females in a similar or different way. They found that the anatomy of the brain of someone with autism substantially depends on whether an individual is male or female, with brain areas that were atypical in adult females with autism being similar to areas that differ between typically developing males and females. This was not seen in men with autism."One of our new findings is that females with autism show neuroanatomical 'masculinization'," said Professor Simon Baron-Cohen, senior author of the paper. "This may implicate physiological mechanisms that drive sexual dimorphism, such as prenatal sex hormones and sex-linked genetic mechanisms."Autism affects 1% of the general population and is more prevalent in males. Most studies have therefore focused on male-dominant samples. As a result, our understanding of the neurobiology of autism is male-biased."This is one of the largest brain imaging studies of sex/gender differences yet conducted in autism. Females with autism have long been under-recognized and probably misunderstood," said Dr Meng-Chuan Lai, who led the research project. "The findings suggest that we should not blindly assume that everything found in males with autism applies to females. This is an important example of the diversity within the 'spectrum'."Dr Michael Lombardo, who co-led the study, added that although autism manifests itself in many different ways, grouping by gender may help provide a better understanding of this condition.He said: "Autism as a whole is complex and vastly diverse, or heterogeneous, and this new study indicates that there are ways to subgroup the autism spectrum, such as whether an individual is male or female. Reducing heterogeneity via subgrouping will allow research to make significant progress towards understanding the mechanisms that cause autism."http://www.sciencedaily.com/releases/2013/08/130809084133.htm Study Finds ‘Different’ Brain In Some With AutismBy Lisa M. Krieger, San Jose Mercury News/MCTAugust 16, 2013Stanford researchers have unearthed clues about the formidable brains of some children with autism, suggesting that the diagnosis may signal a different cognitive style, not disability.Superior math skills were found in San Francisco Bay Area kids with autism and average intelligence compared with matched children without the developmental disorder.The two group’s brain scans were different, as well. Images of the children with autism calculating math problems revealed a different pattern of brain activity than those of children without the diagnosis.This small but important study, the first of its type, “makes us better aware of the unique talents that these people have, which could help them have better academic and professional lives,” said postdoctoral scholar Teresa Iuculano, lead author of the study.“We think it could be reassuring for parents,” she said. The study is being published online Saturday in the journal Biological Psychiatry.Like all people with autism, the children had difficulty with social interactions. But they showed strengths, as well, according to the team of scientists at the Stanford University School of Medicine and Lucile Packard Children’s Hospital.“It is not necessarily a deficient brain, but a different brain,” said Iuculano.In the future, the team hopes to also study typically developing children who struggle with math.Autism comes in many forms. It can be a devastating diagnosis with profound deficits. But people can also have exceptional skills or talents, known as “savant” abilities.Like Dustin Hoffman’s character in the movie, “Rain Man,” they may be adept at calendar calculation — identifying which day of the week someone was born, based on the year of birth. Or they may have stunning visual memories, remembering, for instance, how many windows are in a skyscraper seen only once.The discovery of math talents in such children is particularly relevant in Silicon Valley, where autism diagnoses exceed the national average — although no one knows if there is actually a higher incidence or just better diagnosis. Noted psychologist Simon Baron-Cohen at Cambridge’s Autism Research Centre discovered a correlation between incidence of autism and familial relation to engineers. His 1997 study found that 12.5 percent of fathers and 21.2 percent of grandfathers of children with autism were engineers, compared to 5 percent and 2.5 percent of children without autism.“The study backs up what we already know — that some of these kids have great talents and can often excel. But they look at the world differently, organize it differently and sometimes focus on things differently,” said Brad Boardman, executive director of the Morgan Autism Center in San Jose, Calif., a school for youths and adults with autism.Jeff, a 43-year-client at the center, solves multiplication problems for relaxation, Boardman said. “He will … do intricate multiplication — pages and pages of problems,” Boardman said. “He is absolutely gifted.”“If they are interested in a topic … that interest can be a springboard for a really in-depth understanding of those things, such as in engineering or software design.”The Stanford researchers didn’t rule out the possibility that math skills in kids with autism strengthen due to years of obsessive practice — and that other children might show similar skills if they had the motivation.But the researchers believe there is a biological basis, as well.They studied 36 youngsters, age 7 to 12. Half had been diagnosed with autism. All participants had IQs in the normal range.On standardized math tests, the children with autism significantly outperformed the others. The average test score of the control group was 100; for the group with autism, it was 125.In interviews after the test, the children with autism described a more analytic approach to problem-solving. While other children counted on their fingers or memorized answers, the children with autism broke the problem down into components — a method called decomposition. For instance, if asked the sum of 7 plus 4, they would add 7 plus 3, then add one.Then, the children worked on solving math problems while their brain activity was measured in an magnetic resonance imaging scanner. The brain scans of the kids with autism revealed an unusual pattern of activity in a part of a brain just below the ears, called the ventral temporal occipital cortex.This is an area specialized for processing visual objects, such as faces, leading the team to wonder whether the focus on math in children with autism undercuts their ability to recognize the emotional cues in conversation.“This different brain architecture might even be suitable for certain strong skills to develop, such as problem solving, even though there are things that they may not be good at,” said Iuculano.http://feedly.com/k/17SOaZr Autistic Children Can Outgrow Difficulty Understanding Visual Cues and SoundsAug. 28, 2013 — Scientists at Albert Einstein College of Medicine of Yeshiva University have shown that high-functioning autism spectrum disorder (ASD) children appear to outgrow a critical social communication disability. Younger children with ASD have trouble integrating the auditory and visual cues associated with speech, but the researchers found that the problem clears up in adolescence. The study was published today in the online edition of the journal Cerebral Cortex."This is an extremely hopeful finding," said lead author John Foxe, Ph.D., professor of pediatrics and in the Dominick P. Purpura Department of Neuroscience, as well as director of research of the Children's Evaluation and Rehabilitation Center at Einstein. "It suggests that the neurophysiological circuits for speech in these children aren't fundamentally broken and that we might be able to do something to help them recover sooner."According to Dr. Foxe, the ability to integrate "heard" and "seen" speech signals is crucial to effective communication. "Children who don't appropriately develop this capacity have trouble navigating educational and social settings," he said.In a previous study, Dr. Foxe and his colleagues demonstrated that children with ASD integrate multisensory information such as sound, touch and vision differently from typically developing children. Among typically developing children, multisensory integration (MSI) abilities were known to continue improving late into childhood. The current study looked at whether one aspect of MSI -- integrating audio and visual speech signals -- continues to develop in high-functioning children with ASD as well.In the study, 222 children ages 5 to 17, including both typically developing children and high-functioning children with ASD, were tested for how well they could understand speech with increasing levels of background noise. In one test, the researchers played audio recordings of simple words. In a second test, the researchers played a video of the speaker articulating the words, but no audio. A third test presented the children with both the audio and video recordings.The test mimics the so-called "cocktail party" effect: a noisy environment with many different people talking. In such settings, people naturally rely on both auditory and facial clues to understand what another person is saying. "You get a surprisingly big boost out of lip-reading, compared with hearing alone," said Dr. Foxe. "It's an integrative process."In the first test (audio alone), the children with ASD performed almost as well as typically developing children across all age groups and all background noise levels. In the second test (video alone), the children with ASD performed significantly worse than the typically developing children across all age groups and all background noise levels. "But the typically developing children didn't perform very well, either," said Dr. Foxe. "Most people are fairly terrible at lip-reading."In the third test (audio and video), the younger children with ASD, ages 6 to 12, performed much worse than the typically developing children of the same age, particularly at higher levels of background noise. However, among the older children, there was no difference in performance between the typically developing and children with ASD."In adolescence, something amazing happens and the kids with ASD begin to perform like the typically developing kids," said Dr. Foxe. "At this point, we can't explain why. It may be a function of a physiological change in their brain or of interventions they've received, or both. That is something we need to explore."The researchers acknowledge some limitations to their study. "Instead of doing a cross-sectional study like this, where we tested children at various ages, we would prefer to do a longitudinal study that would involve the same kids who'd be followed over the years from childhood through adolescence," Dr. Foxe said. "We also need to find a way to study what is happening with low- and mid-functioning children with ASD. They are much less tolerant of testing and thus harder to study."According to the researchers, the work highlights the need to develop more effective therapies to help ASD children better integrate audio and visual speech signals. "We are beginning to work on that," said Dr. Foxe.This study was primarily supported by a grant from the National Institute of Mental Health (MH085322), part of the National Institutes of Health. Pilot support was provided by Cure Autism Now, the Wallace Research Foundation, Fondation du Quebec de Recherche sur la Societe et la Culture, and the Canadian Institute of Health Research.http://www.sciencedaily.com/releases/2013/08/130828114156.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily+%28ScienceDaily%3A+Latest+Science+News%29&utm_content=Yahoo%21+MailStudy aims to capture autism's transition into adulthoodPopularity trackerEmily Anthes26 August 2013 Adjusting to adulthood can be difficult for any young person, but for adolescents with autism or other developmental disorders, the transition can be especially difficult. Leaving high school often means losing valuable social services1 as well as a chance to interact with peers2, and many of these young adults struggle to find jobs.In the midst of such challenges, these adolescents are also aging out of pediatric healthcare services, leaving behind the doctors they have come to know and trust.Although researchers have begun to document many of the pressures that young adults with autism face, “about the transition out of pediatric care, we really know next to nothing," says Julie Lounds Taylor, assistant professor of pediatrics and of special education at Vanderbilt University in Nashville, Tennessee.A large study underway in the U.K. aims to fill this research gap. The project, described 23 July in BMC Public Health, is following 450 teenagers with complex health problems — 150 each with autism, cerebral palsy and type 1 diabetes — as they graduate from pediatric healthcare services and enter the adult system3.The researchers, based at Newcastle University, plan to spend three years tracking these adolescents’ encounters with the medical system, as well as their overall health and well-being. Their aim is to identify the clinical strategies and services that best aid patients in navigating this tricky transition.“We’re very much hoping that we will be able to see models of good practice that other people can learn from,” says Helen McConachie, professor of child clinical psychology at Newcastle University and one of the study’s investigators.By identifying the medical practices that are associated with successful transitions — and collecting the teenagers’ own opinions about their care — the study may also serve as a jumping-off point for researchers who want to delve more deeply into the needs of young adults with autism or related conditions. Complex challenges:Graduating from pediatric medical practices can present a variety of challenges. It can, of course, be difficult to leave a familiar doctor, but many adolescents with complex health needs — particularly those arising from neurodevelopmental disorders — may also have trouble finding new healthcare providers who are both willing and able to treat them, experts say.“There really aren’t many adult psychiatrists and adult internists who are trained to work with people with developmental disabilities,” says Paul Shattuck, associate professor at the Brown School of Social Work at Washington University in St. Louis, who was not involved in the study.“These young people are aging into a network of services and supports where there’s no clear door to walk through that has their name on it,” Shattuck says. “There’s no adult-level clinical specialty."Young adults are also often expected to take more control of their own health needs, which can be a big change for those used to family involvement in their care.Over the years, scientists, healthcare providers and policy makers have made a variety of suggestions for improving these transitions.For instance, some have suggested that teens work with doctors to develop a written ‘transition plan,’ outlining the steps and tasks involved in moving on to a new medical provider. Another recommendation is that they work with a single, designated caseworker, who can help coordinate care, answer questions and provide support throughout the process.But the empirical evidence behind many of these recommendations is limited4 — based on small, cross-sectional, qualitative studies or on those that focus purely on individuals with chronic physical illnesses, such as diabetes.“In diabetes, there’s been ten years of quite intensive research on how to ensure a smooth transition between child and adult health services,” McConachie says. “At the point that we proposed the research, we did a review and found no published models at all on [autism].”McConachie and her colleagues aim to remedy the problem by studying whether any of these recommended practices are associated with better health outcomes.To represent a wide variety of healthcare needs, the study is enrolling adolescents — between the ages of 14 and 19 — with one of three different complex, ongoing conditions. One-third of the participants will be teens with diabetes, one-third those with cerebral palsy, and the final third will be those who have autism accompanied by a mental health issue, such as anxiety or depression, and who may be taking medications for it.The study’s comparative approach is likely to yield more powerful insights than following any one group alone, says Shattuck. “That’s always a strength when a study can contextualize the experience of one group against the experience of another,” he says.The researchers decided to require an accompanying mental health issue for those with autism because many adolescents with the disorder might not otherwise be receiving ongoing, specialized care — and because about 70 percent of those with autism do have an additional mental health disorder, McConachie says.Strict criteria:Because the goal of the study is to learn about healthcare transitions from the participants themselves — rather than through proxy reports from parents or caregivers — the scientists also chose to exclude those whose intellectual abilities are severely impaired and who cannot meaningfully participate in discussions about their own care. Enrollment, which began about a year ago, is expected to be completed this fall.The researchers are following the teens as they transition out of children’s healthcare services, visiting each participant once at the beginning of the study and then once a year for the next three years. At each annual visit, they plan to assess the adolescents’ general health and well-being, evaluating factors such as mood, mobility and pain.“I like that it’s a longitudinal study,” Taylor says. “It’s a lot harder to do this kind of work where you follow people over time, but it’s really important to see these processes unfold.”The researchers also plan to evaluate the extent to which each participant is engaged in the activities normally associated with adulthood — for instance, whether he or she has a job, a social life or an intimate relationship.They will also conduct interviews, comb through medical files and examine appointment logs to determine whether each participant has received any of nine recommended medical practices. Does the participant have a written transition plan? A key caseworker coordinating his or her care? Did he or she get the chance to meet any new healthcare providers in advance?“Because of the large size of the sample, we hope to be able to detect patterns,” McConachie says.In an effort to gain deeper insight into the transition process, the researchers also plan to select a cross-section of 15 participants — 5 each with autism, diabetes and cerebral palsy — to interview in more detail. These participants will be asked to document their own transition experiences, through written diaries, photos, videos or another method of their choosing.This sort of detailed analysis may help tease apart the most important elements of complex healthcare and identify the “active ingredients” of a successful transition, notes Taylor.The study does have one significant limitation: its exclusion of teens with severe intellectual impairments. That means that what the researchers find may not apply to all individuals on the autism spectrum.Even so, experts say they are excited to see more scientific attention being paid to the challenges faced by young adults with autism, a group that has often been overlooked.“I hope this is one of many more studies to come that will be focusing on these issues,” Shattuck says. “A bad launch into adulthood — that’s a set up for a cycle of failure and disengagement that can last many years.”News and Opinion articles on SFARI.org are editorially independent of the Simons Foundation.References:1: Shattuck P.T. et al. Arch. Pediatr. Adolesc. Med. 165, 141-146 (2011) PubMed2: Liptak G.S. et al. J. Dev. Behav. Pediatr. Epub ahead of print (2011) PubMed3: Colver A.F. et al. BMC Pub. Health 13, 675 (2013) PubMed4: Watson R. et al. Child Health Care Dev. 37, 780-791 (2011) PubMedhttp://sfari.org/news-and-opinion/news/2013/study-aims-to-capture-autisms-transition-into-adulthood My Marvelous Journey with Incredible Savants: What Have I Learned?By Darold Treffert | July 31, 2013So much of what happens to us in life is not by plan, but rather by coincidence or serendipity.  Thus it was with me and my career.After completing my residency in psychiatry I was assigned the responsibility of developing a Children’s Unit at Winnebago Mental Health Institute here in Wisconsin.  There were over 800 patients at the hospital, some under age 18.  We gathered about 30 such children and adolescents and put them on this new unit.  Three patients particularly caught my eye.  One boy had memorized the bus system of the entire city of Milwaukee with exhaustive detail and precision.  Another little guy, even though mute and severely disabled with autism, could put a 200 piece jig saw puzzle together—picture side down—just from the geometric shapes of the puzzle pieces.  And a third lad was an expert on what happened on this day in history and even though I would study up the night before, knowing he would quiz me the next day, I could never surpass his recall of events on that day in history.I was stunned, and intrigued, by this jarring juxtaposition of ability and disability in the same individual and began to study all that I could about savant syndrome—“islands of genius”  amidst a sea of impairment.  Then in 1980 Leslie Lemke came to Fond du Lac to give a concert.  Leslie–blind, cognitively impaired and with such spasticity in his hands that he could not hold a fork or spoon to eat—had become a accomplished pianist, never having had a piano lesson in his life. Somehow the hand spasticity magically disappears when he sits at the keyboard. The 1983 60 Minutes program, which many still remember, recounted in detail the astonishment of Leslie’s mother, May Lemke, one evening, when Leslie, age 14, played back Tchaikovsky’s Piano Concerto No. 1 flawlessly, having heard it earlier for the first time that evening as the soundtrack to the movie Sincerely Yours.I was not at the concert.  But my oldest daughter Joni did attend.  She came bounding home telling me “Dad, Dad, I just saw a miracle” and she told me the story of Leslie and his remarkable mother May, “the woman who willed a miracle”  as depicted by Cloris Leachman in the movie by that title.  A local television station was at that concert and they were also stunned by what they saw. So they brought the videotape to me as the local mental health expert to try to explain this extraordinary phenomenon of savant syndrome.  I explained it as best I could. There was a reporter from the wire services in that meeting and the story of Leslie Lemke and his mother May was carried by the national press.  Then Walter Cronkite used the story of a “young man, a piano and a miracle” as his Christmas story that December.  And other programs such as That’s Incredible carried the story.  Leslie and May were instant celebrities.The October, 1983 60 Minutes program mentioned above was titled “Genius” and featured Leslie, the musician along with Alonzo, the sculptor and George, the calendar calculator.   The program   was very well done, and memorable, such that it put savant syndrome on the national and international radar screens.  Following that program Leslie, Alonzo, George and many other savants  made the rounds of all the talk shows and appeared in many other television network programs and documentaries.Then in 1989 the movie Rain Man, starring Dustin Hoffman as Raymond Babbitt, made ‘autistic savant’ a household term.   I had the privilege of being a technical consultant to the movie which was very accurately and sensitively done.From meeting my first savant until now I have learned many lessons from watching and listening to these extraordinary people and their equally extraordinary families on my fascinating half-century journey with them.  While I started that journey curious about the mind of the savant, along the way I have learned equally as much about the world of the savant.  In so doing I have learned to care as much about the savant who has the condition, as I have about the condition the savant has.  And therein lies a bedside manner clue for all doctors who always ought to devote as much attention to the needs of the person who has the disease as they do to the disease the patient has.  Good bedside manner is not just caring for the patient, it is caring about him or her as well.Lessons learned:  What are some of those lessons?An “island of intactness”First, savants have convinced me that no matter how impaired or disabled an individual might appear to be, within that person, somewhere in whatever form or quantity, there exists an ‘island of intactness’  and it is our task and opportunity to discover that kernel of ability, to tend it, to nourish it, to reinforce it and then to watch it grow and bring along with it better language, social and daily living skills.  For some, such as savants, that island of intactness is an island of genius.  But in others that island of intactness is even more buried, subtle and not as spectacular.  But our mission still is to discover and tend that island of intactness, in whatever quality or quantity it exists.  In that regard the families of savants are role-models for all of us in discovering and tending whatever special gifts might be hidden, and to focus on strengths rather than deficits.  The families and caretakers of these special people celebrate what is there, without disappointment or regret with respect to what is missing, and they demonstrate mightily the power of untiring patience, indefatigable optimism, unfailing faith and unconditional love.  They show convincingly that love is a good therapist too.“Training the talent”: imitation to improvisation to creativitySecond, the savant skills of music, art or math are not merely frivolous or freakish abilities and they deserve more than a fleeting “Gee, whiz, look at that” glance before we return to our more ordinary inside-the-box observations.  Instead it is through those extraordinary abilities that the savants speak to us.  It is their language, and for some at first, their only language.  But the good news is that, once recognized, by ‘training the talent’ the savant not only adds more depth to those exceptional skills, but more importantly ‘training the talent’ leads to improved language, social and daily living skills on a path toward greater independence.  Interestingly, those skills also, over time, follow a predictable pathway beginning with impressive replication, then adding improvisation to finally creation of entirely new material.  Thus savants are more than imitators or replicators.  They can be, and are, creative in their own right.Self-esteem in abundanceThird, I have been impressed with the general contentment and happiness that persons with savant syndrome demonstrate.  Good self esteem abounds, as it should given their special abilities.  Alonzo is one of the most mellow persons I have ever met.  He has a perpetual smile, warmth and gentleness that is contagious.  If there were a medal for being the most mellow man, I would give it to Alonzo. Savants are not a modest group; they are profoundly proud of their abilities, as well they should be.  As George, the calendar calculator said on the 60 Minutes program:  “It’s fantastic I can do that!”.  And it truly is.  No doubt some of that contentment and happiness stems from the unqualified acceptance and love they receive from their families and there is a lesson for all of us in that.  Beyond that, if the savant, with whatever limitations he or she has can be content and uncomplaining, what lesson might also lie therein for the rest of us.The incredible complexity of the brainFourth, savants have provided me with a greater appreciation, and awe for human brain and its capacity.  The human brain and mind (even if they are not entirely the same) have always been of special interest and curiosity to me.  That’s why I chose Psychiatry as a specialty.  And the more I learn about the brain through the special window into the brain that savant syndrome provides, the more impressed I am by its capacity and capability.Witness to that is a picture I have of “Watson”, the computer that was the pinnacle of artificial intelligence, challenging humans to a game of Jeopardy.  In the picture there are six or seven huge servers that comprise Winston’s memory.  Standing next to those behemoth memory banks is a man whose head, with approximately 3 ½ lbs of grey and white matter can easily out distance Winston in many ways, including originality and creativity.  After all, who programmed Winston?Can the brain transcend itself to explain itself?Fifth, with new technology now, such as functional MRI, we can for the first time see the brain at work, rather than are all the parts there (CT or static MRI).  Brain research is the newest and most formidable frontier of human organ explanation and savant syndrome exploration contributes liberally to that important research.  But a lingering question remains for me.  While the brain can ultimately explain the heart, and the liver and the kidney, for example, can the brain transcend itself to fully explain itself?  I don’t know for sure but I think there may be a basic barrier to the brain going outside it self to fully understand itself. Yet this I do know..   No model of brain function will be complete until it can fully incorporate and account for savant syndrome and the co-existence of sometimes massive disability with extraordinary ability in the same person.  That exploration is a work in progress.The dormant potential—the little Rain Man—within us allFinally, there is so much that is fascinating to me about savant syndrome.  But I have always felt, from the moment I met my first savants that they hint at dormant potential—-a little Rain Man perhaps–within us all.  My recent encounters with ‘acquired savants’—neurotypical persons who suddenly show extraordinary savant skills, sometimes at a prodigious level, after a bead injury, stroke or other CNS incident,  cements that conclusion further.  I invite readers to learn more about both congenital and acquired savants, and the dormant potential within us all, in my two books on these remarkable persons:  Extraordinary People: Understanding Savant Syndrome or Islands of Genius: The Bountiful Mind of the Autistic, Acquired and Sudden Savant.  And, there is additional information, including many videos, on the savant syndrome website, hosted by the Wisconsin Medical Society, at www.savantsyndrome.comA smoother pebbleMy journey with savants reminds me of what Sir Isaac Newton said reflecting on his journey with some laws of nature: “I do not know what I may appear to the world; but to myself I seem to have been only like a boy on the seashore, and diverting myself in now and then finding a smoother pebble or a prettier shell than ordinary, whilst the great ocean of truth lay all undiscovered before me.”To me savants are that smoother pebble and indeed a great ocean of truth remains undiscovered about them.  Yet the more we learn and understand them, the further we will be in better understanding both the brain and human potential. About the Author: Dr. Darold Treffert met his first savant in 1962 and has been intrigued with those spectacular “islands of genius” seen in these extraordinary people ever since. His work has appeared in several previous Scientific American and MIND articles and it two books: Extraordinary People: Understanding Savant Syndrome (2006) and Islands of Genius: The Bountiful Mind of the Autistic, Acquired and Sudden Savant (2010). He also maintains an internationally respected website on savant syndrome, autism and related conditions at www.savantsyndrome.com hosted by the Wisconsin Medical Society.The views expressed are those of the author and are not necessarily those of Scientific American.http://blogs.scientificamerican.com/mind-guest-blog/2013/07/31/my-marvelous-journey-with-incredible-savants-what-have-i-learned/  See More

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