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Sat, 05 Feb 2011 03:57:43 GMT
- Autistic adults' needs 'not met,' says Wales charity - Sat, 05 Feb 2011 03:57:43 GMT
More than half of adults with autism in Wales say their needs are not being met, according to a charity. The National Autistic Society Cymru said despite improvements, many people with the condition still had difficulty finding and securing services.
One in 10 adults said they had waited 10 years to be diagnosed, while 12% said they had been homeless. The findings are published in a report called The Life We Choose: Shaping Autism Services in Wales.
The report highlights that while progress has been made across Wales in diagnosis and support, many people still feel that there is a lack of available services and professional understanding.
One mother said that earlier diagnosis of her daughter's condition might have saved her marriage.
The NAS Cymru report found that 54% of the 354 people in Wales interviewed thought that their needs were not being met, while 58% the diagnostic process took too long.
Almost a third of adults with autism said they did not know where to find the support they needed, while 26% of parents and carers said they had been given a carer's assessment, but only 52% of these receiving support as a result.
Some 59% of parents and carers said that a lack of timely support had resulted in higher support needs in the longer term.
Increased awareness of autism in schools can help children and young people reach their potential and also help prevent issues like bullying, according to NAS Cymru.
Jo Salmon, whose daughter, Holly, 12, has high-function autism, said the diagnosis was a "long process".
"When she was a baby there was something not quite right but it took five years," said Ms Salmon, of Caerphilly. "It was a fight to get a diagnosis.
"There have been a lot of changes - it turns the role of parent on its head. I had to learn new strategies on how to deal with Holly.
"I was upset and angry that it took five years to get a diagnosis.
"If we'd had a quicker diagnosis Holly would have had coping strategies sooner and I'd have dealt with her in a completely different way.
"Our lives would have been much easier and maybe - maybe - my husband and I would still be together.
"Things are difficult. Things fall on me, while my son is classed as a young carer because he helps Holly a lot with different things. It has been difficult, and it continues to be difficult."
Jill Grange, who lives in Bridgend with her 12-year-old son Matthew, said her family had a mixed experience of education and support.
"For years, I was unable to get appropriate support for my son in school," she said.
"It would be a different person helping him all the time so there was no consistency, and they seemed to have little or no training in autism.
"It got to a point where I had to home educate. He is now in a mainstream school, which understands his condition, but it's followed years of struggling."
Rebecca Evans, of NAS Cymru, said: "Our report is based on the largest-ever study of the experiences of those affected by autism across Wales and, crucially, reveals just how many are still not getting the basic help they need.
"While we are pleased to highlight several examples of promising work, such as the development of an all-Wales approach to adult diagnosis, and the production of awareness-raising resources for newly qualified teachers, what we need now is to ensure that people really feel the benefit and receive the support they are telling us they need."
- Autism Speaks UK changes its name to Autistica - Sat, 05 Feb 2011 03:44:58 GMT
LONDON, UK: The British charity, Autism Speaks, and the charity of the same name in the United States are pleased to announce that the former will be renamed Autistica with effect from January 1, 2010. The UK charity has adopted as its positioning statement “Science in the Service of Autism."
The two charities are linked by a common interest in raising funds for and funding biomedical research into the causes and treatment of autism, and have been fully separate and independent entities since March 2007. The American charity is as well-known both domestically and internationally for the advocacy work that its name implies as for the biomedical research it funds.
The British charity continues to be focused entirely on biomedical research and so its new identity is one which better reflects this core purpose. The change took place at the end of 2009 and is effective from January 1, 2010. The two organisations will continue to collaborate as now in areas of shared interest, which include a number of collaborative international research projects in the fields of autism genetics, the study of baby siblings of children with autism and brain studies.
Hilary Gilfoy, chief executive of Autistica, said: “We are grateful to our American colleagues in Autism Speaks for the support which they have given us during our first five years. This arrangement allowed us to benefit from their robust research template and funding experience.
The change of name acknowledges that, with their help, we are now a mature organisation able to stand on our own two feet and establish our own identity. We are looking forward to continuing our shared interest in research.”
Mark Roithmayr, President of Autism Speaks, said: “We are delighted that the UK charity has become a recognised funder of autism research in its own right, and fully agree that the time has come when its independent status and separate identity should be reflected in its name. Progress in research relies on international collaboration between researchers and funders and we will continue jointly to encourage and develop this. We wish Autistica every success.”
Founder and now president of the UK charity, Dame Stephanie Shirley, said: “I am delighted that we have been able to increase funding for autism research in the UK by following the example of the pioneering families in the United States who first inspired me and then supported me in creating the UK charity. I am sure Autistica will continue to go from strength to strength and I am proud that my own Shirley Foundation will be supporting the charity under its new name by meeting its core costs until 2012.”
Dr Simon Wallace, Autism Speaks’ Director of Research Development Europe, will continue to be based in the UK and will continue to act as a link between the two organisations.
(Source: Autistica, January 1, 2010)
- New study points to duration between pregnancies as a potential risk factor for - Sat, 05 Feb 2011 03:42:38 GMT
NEW YORK, USA: Children born within one year of an older sibling may be three times more likely to be diagnosed with autism, according to a new study in the February 2011 issue of Pediatrics.
The study calls attention to interpregnancy interval (IPI), the duration between pregnancies, as a potential risk factor for autism. In the past, much focus has been on environmental triggers of autism such as vaccines as opposed to maternal physiological triggers such as the womb environment.
If the new findings are confirmed and proven to be related to maternal depletion of key nutrients such as folate, it may be possible to prevent autism with nutritional supplements, the study authors and autism experts suggest.
The latest statistics from the Atlanta-based Centers for Disease Control (CDC) show that one in 110 children in the United States has an autism spectrum disorder. This is the umbrella term for a group of developmental disorders that can range from mild to severe and that often affect social interaction and communication skills. According to information in the new study, the proportion of births occurring within two years of an earlier birth increased from 11 per cent to 18 per cent between 1995 and 2002.
Researchers analysed autism risk among more than 660,000 second-born children born in California from 1992 to 2002. Those children who were conceived within one year of an older sibling were more than three times as likely to be diagnosed with autism when compared to peers who were conceived more than three years after the birth of an older sibling.
Children conceived 12 to 23 months after an older sibling were nearly two times more likely to be diagnosed with autism; children conceived two years to 35 months following an older sibling were one and a quarter times more likely to be diagnosed with autism, the study showed.
The findings held even after researchers took into account other factors that may be related to closely timed pregnancies, such as maternal age and maternal education.
“The robustness of the findings was really shocking,” says the study author, Dr Peter Bearman, the Jonathan Cole Professor of the Social Sciences at Columbia University in New York City.
Still many questions remain, including exactly how closely spaced pregnancies may affect autism risk, Dr Bearman says. “It could be a biological factor, such as maternal depletion of nutrients like folate, or another process that hasn’t been described or discovered yet,” Dr Bearman says. “If the mechanism is depletion of nutrients like folate, then women can make sure to take supplements of it, and if it is something else, it also may be readily modifiable.”
It also could just be that parents with closely spaced kids are more attuned to normal child development, he says. “Parents who have had closely spaced children are more aware of developmental dynamics and more likely to seek help if the child is not developing on the right trajectory,” he says.
“Watch the science,” he says. “This is the first study, but there is a lot more work to be done.”
(Source: WebMD, Janauary 10, 2011)
- Needs of autistic boy raised at PM's questions - Sat, 05 Feb 2011 03:18:13 GMT
The Prime Minister, David Cameron, has said the family of a Nottinghamshire boy with autism should fight to stop his speech therapy being withdrawn.
The case of Dylan Scothern was raised in Prime Minister's Questions by the Labour MP for Gedling, Vernon Coaker.
Mr Coaker said the six-year-old had his speech and language therapy support taken away by Nottinghamshire Community Health because "he's too old".
The prime minister said: "You have to make the fight."
Mr Coaker asked what he should say to Dylan's mother Rachel.
The prime minister responded: "I'm sure the honourable gentleman will work as hard as he possibly can to help that family to get the therapies that they need.
"We are producing a paper on special educational needs which will try and reform the ways these things are done and make it less confrontational.
"I know as a parent how incredibly tough it is sometimes to get what your family needs."
In November 2010 Dylan's mother Rachel told BBC East Midlands Today she was outraged the speech therapy service was being withdrawn as part of NHS cuts.
Dylan received regular assessments which the family said is vital to his progress.
- Autism File launches on Sky TV! - Fri, 04 Feb 2011 14:14:50 GMT
- The first ever weekly TV show on autism is to be launched by Information TV through its Sky, FreeSat and web channels. Autism File is a weekly program dedicated to supporting and informing people and families living with autism.
Autism is a worldwide issue that needs to be addressed as a matter of urgency; the program series will cover subjects from how to get a diagnosis and what a diagnosis means, through implications for education, health, puberty, teen-issues and family life; how siblings deal with autism in the family, adults with autism in the workplace and what the future holds. Autism File looks at all aspects of the condition.
Host Polly Tommey is the mother of a teenage son with autism; she is Editor-in-Chief of The Autism File Global and Founder of The Autism Trust non-profit. Polly will travel to autism conferences around the world, reporting on the very latest findings; she will interview families, parents, and people with autism bringing their experience and advice to your screen.
“For the past 12 years I have been answering the phones and meeting parents desperate for help in the most basic areas,” says Polly. “The number of people being diagnosed with autism is rising rapidly; we need to find out why. Many parents report that their children have chronic health problems, particularly in relation to the bowel. Why? Parents are waiting up to 7 years for a diagnosis. Why? We know that the earlier we get help to these children the better the outcome. Parents have had to set up schools and colleges themselves. Why? And now these same parents prepare for the future as the lack of facilities for adults becomes increasingly obvious. Autism File will be reporting on all of these issues and more.
Our programs are edited and put together by Andrew Dobosz. Andrew is 23; he is extremely talented and has excellent attention to detail. Most production companies have a full team but Andrew, who has Asperger’s Syndrome, produces the entire programme on his own. The Autism Media Channel is most proud and grateful to be working with someone of Andrew’s caliber and skill.
Starting from Monday 7th February Autism File goes out on Information TV at 4.30 pm on Mondays. It is repeated at 7.00pm on Thursdays and 12.00 on Sundays (All times GMT). The programme can be seen on Sky TV – 166; FreeSat 402 or on the web at www.information.tv or via the Autism File
- Free iPod Touches For Autistics - Fri, 04 Feb 2011 14:10:35 GMT
- Priya Kishnan a high school junior from Alexandria Virginia founded the organization Project Touch and is partnering with Autism Speaks to provide free iPod touches to those on the Autism Spectrum. Those interested in obtaining an iPod touch for free, the directions are below.
Selection Criteria: please clearly write, not exceeding one page, why your family/child/student should be awarded an Apple iTouch. While we do not require income information, please explain why your child/family is deserving of the award. The purpose of this project is to help children with autism whose families are not able to afford items such as Apple iTouch units.
Please adhere to the one-page requirement, provide complete contact information, and list the name of the child and the school he or she attends. Recipients must be residents of Virginia. Send the completed write-up to the following address:
c/o Autism Speaks
1990 K Street, NW, 2nd Fl
Washington, DC 20006
mail, fax to 202.955.3115 or email to email@example.com
Deadline: March 15, 2011
- "Contemporary Issues in Autism and Asperger's" - Fri, 10 Dec 2010 06:50:59 GMT
Dr. Ami Klin
This workshop will:
• Focus on issues pertaining to school-age, adolescents and adults
• Address challenges and practical interventions/approaches
• Discuss selective issues on assessment, treatments and implications of new research
• Present a practical guide and assist professionals who are working with people with ASD
Ami Klin, Ph.D. is the Harris Professor of Child Psychology and Psychiatry at the Yale Child Study Center. He obtained his Ph.D. from the University of London, and completed clinical and research post-doctoral fellowships at the Yale Child Study Center. He directs the Autism Program at Yale, which is one of the National Institutes of Health Autism Centers of Excellence. This program includes a broad range of diagnostic and treatment services, and an interdisciplinary program of research that includes behavioral, brain, and genetics investigations. The program also provides training in a broad range of disciplines, and is strongly committed to advocacy at the local, national and international levels. Dr. Klin's primary research activities focus on the social mind and the social brain, and on aspects of autism from infancy through adulthood. These studies include novel techniques such as the eye-tracking laboratories co-directed with Warren Jones, which allow researchers to see the world through the eyes of individuals with autism. These techniques are now being applied in the screening of babies at risk for autism in the Simons Laboratory of Social Neuroscience in Infancy. He is the author of over 150 publications in the field of autism and related conditions. He is also the co-editor of a textbook on Asperger Syndrome published by Guilford Press (soon to be released in its second edition), the third edition of the Handbook of Autism and Pervasive Developmental Disorders published by Wiley, and several special issues of professional journals focused on autism and related disorders.
- Boy in a bubble - Mon, 03 Aug 2009 23:34:04 GMT
- 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 - Mon, 03 Aug 2009 22:18:14 GMT
- 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 - Mon, 03 Aug 2009 21:50:17 GMT
- 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
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