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Autism Speaks UK changes its name to Autistica
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Posted by Sylvia on Saturday, February 05, 2011 (04:44:58)
AWARES
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)
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Autism File launches on Sky TV!
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Posted by Sylvia on Friday, February 04, 2011 (15:14:50)
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
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Free iPod Touches For Autistics
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Posted by Sylvia on Friday, February 04, 2011 (15:10:35)
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:
Project Touch
c/o Autism Speaks
1990 K Street, NW, 2nd Fl
Washington, DC 20006
mail, fax to 202.955.3115 or email to nationalcapitalarea@autismspeaks.org
Deadline: March 15, 2011
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The 1950s concept of ‘refrigerator mothers’ and autism
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Posted by sylvia on Monday, August 03, 2009 (22:18:14)
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
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Finding support by supporting others
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Posted by sylvia on Monday, August 03, 2009 (17:08:57)
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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