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News : Autistic adults' needs 'not met,' says Wales charity
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Posted by Sylvia on Saturday, February 05, 2011 (04:57:43)
BBC
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".
'New strategies'
"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."
'No consistency'
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."
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Needs of autistic boy raised at PM's questions
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Posted by Sylvia on Saturday, February 05, 2011 (04:18:13)
BBC
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.
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"Contemporary Issues in Autism and Asperger's"
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Posted by yainipd on Friday, December 10, 2010 (07:50:59)
Featuring:
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.
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The autism epidemic cometh
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Posted by sylvia on Monday, August 03, 2009 (09:37:14)
Times Online By Mark Henderson
When Leo Kanner first described autism in 1943 it was thought to be extremely rare, affecting no more than one to three children in 10,000. Yet it is now so common, with a prevalence of between one in 300 and one in 100, that most people know an individual or family touched by it.
These statistics have given currency to the idea that there is an autism epidemic - and to fears that an aspect of modern life has made children more susceptible. This has fed unfounded scares about the role of vaccines.
Although autism is certainly diagnosed more often than it once was, that does not mean that more children are developing it. As a remarkable book being published next week explains, the condition is probably no more prevalent than it has always been. What has changed is that it is being recognised properly for the first time.
Roy Richard Grinker is the father of Isabel, an autistic girl, now 14. His book Unstrange Minds is a powerful memoir of his family's experience;of the struggle to obtain a diagnosis for Isabel and to have her needs catered for by the education system. It also describes her difficult but warm and rewarding personality and her family's joy as she learns to make sense of a confusing and often frightening world.
It is impossible not to be moved, not least by Isabel's transforming fascination with Monet's water lilies, and the moment when an argument with her non-autistic sister shows that she is starting to understand other people's emotions.
Grinker is also an anthropologist, who has used his skills to examine how cultural attitudes to autism affect our experience of the condition. His compelling argument is that there is no autism epidemic. The apparently rising incidence is the result of broader, earlier and more accurate diagnosis and greater awareness among doctors and patients.
Autism did not feature in the standard psychiatry textbook, the Diagnostic and Statistical Manual of Mental Disorders, until 1980. Later revisions broadened the criteria, placing more children in the autistic spectrum. One even contained an error that inadvertently widened the definition.
These changes, Grinker shows, matched the curve of the supposed epidemic. Children who would once have been considered mentally retarded or schizophrenic are today classed, more correctly, as autistic. So, too, are some higher-functioning children with autism-spectrum disorders, who previously escaped psychiatric attention altogether. These people were always there but have now been given an appropriate label.
Altered parental perceptions have made a difference, too. As autism has been diagnosed more often, it has become less frightening and more socially acceptable. Indeed, much less stigma is attached to this disorder than to mental retardation: many parents of atypical children now want them to be labelled autistic. Grinker's assessment of autism in non-Western cultures adds to his case that complex cultural factors cause the same symptoms to be interpreted differently.
The availability of social, educational and medical services can also matter. Grinker's home state of Maryland, for example, waives many medical fees for autistic children but not for the mentally retarded, creating an incentive for parents and their doctors to lean one way and not the other.
If Grinker is right, the so-called autism epidemic is not to be feared but to be celebrated. It means that children and adults who for centuries have been given the wrong diagnosis, or been missed altogether, are finally being assessed appropriately. That can only be good for research into the condition's origins and treatment. Most importantly, it will help the rest of us to understand and meet autistic people's needs.
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Mother Of Autistic Boy Fights Church Ban
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Posted by sylvia on Monday, August 03, 2009 (09:05:11)
EnewsBy Andra Griffin
Carol Race, the mother of an autistic boy who's been kept out from the family's church pleaded not guilty to a charge of violating a restraining order. A pretrial settlement hearing was set for July 14 in Todd County District Court.
Last month, the Reverend Daniel Walz at Bertha's Church of St. Joseph took the unusual measure of obtaining a restraining order, barring Carol and her husband from bringing their severely autistic 13-year-old son, Adam, to the central Minnesota Roman Catholic church. Walz argued his decision by alleging that the boy had become a danger to parishioners. The reverend said Adam has struck a child during mass, urinated and spit in church and nearly knocked over people.
"His behavior at Mass is extremely disruptive and dangerous. Adam is 13 and growing, so his behaviors grow increasingly difficult for his parents to manage," wrote Walz in his petition for the restraining order.
The case triggered a nationwide media controversy, including a spot on ABC's "Good Morning America," which was set in motion by Race and her support group of families with special-needs children.
Autism is a severe infant disorder of communication and behaviour that develops before the age of three. The autistic child is unable to use language meaningfully or to process information from the environment. About half of all autistic children are mute, and those who do speak often only repeat mechanically what they have heard. The term autism refers to their withdrawn appearance, but its connotation of voluntary detachment is inappropriate.
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