OAARSN NEWS BULLETIN
11 April 2007
Eyes Have It' - Autism Research Yields Surprising Results
Two new studies at Indiana University demonstrate that videos depicting exemplary behaviors can be effective in helping children and adolescents with autism spectrum disorders develop social skills and daily living skills.
Kennedy Krieger Institute Launches First US National Online Autism Registry
For families interested in taking part in autism research, Kennedy Krieger's new national online autism registry may be of great interest. Kennedy Krieger is a major research institution, and the Interactive Autism Network (IAN) (www.IANproject.org) is intended to serve several different functions, including:
-Data Collection - Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN’s goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.
-Research Recruitment - IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.
-Community Building - the IAN project hopes to engage the entire autism community – from parents to policy makers to the media – in an online meeting place where they can become more knowledgeable consumers of autism research. This arm of the IAN project provides consumer-friendly, evidence-based information about autism, explains the value of research in general, and gives updates on current and future research studies.
On a related note, the National Autistic Society has launched an online questionnaire for autistic adults living the United Kingdom. This project is intended to gather information in order to help improve services to British adults on the autism spectrum.
Autism a lifelong burden, study shows
Andre Picard's column in The Globe and Mail points out that "because few adults with the disorder can work, the economic costs continue." He quotes a new study, published this week in the Archives of Pediatric & Adolescent Medicine, that examines how these costs are incurred throughout the lifetime of a person with autism. The study showed that direct medical costs were high in the first five years of life, at about $35,000 annually (all US dollars). That is when most behavioural therapies are offered. The indirect costs to parents, in large part due to lost income, are also quite high in the childhood and adolescent years, averaging $43,000 annually. But as a person with autism ages, the costs of non-medical care soars, and so do productivity losses. Costs for programs for autistic adults are paid out-of-pocket, with costs averaging $27,500 a year. Many people with the disorder do not work and their parents still need to provide care, factors that translate into economic losses averaging $52,000 annually, according to the research. The lead author is quoted as saying that costs of specialized adult care should awaken parents to the need for financial planning. "Parents of children with autism should seek financial counselling to help plan the transition into adulthood."
Read full text of this article
Look at all contents for special Autism issue of Archives of Pediatric & Adolescent Medicine
In Autism, Hope at Any Age
Susan Senator begins an article in the Washington Post:
"What does last month's news from the Centers for Disease Control and Prevention -- that autism incidence is now 1 in 150--mean to me, a mother of a 17-year-old severely autistic boy? Unfortunately, almost nothing." Encouraged by a small burst of independence by her son, she continues:
..."if we strike while the iron is hot we might end up making a huge difference in his future, his independence. We are not alone. The many families of older autistic children have needs, too. We want support such as home-based therapy and job training for our children. We want housing for them. We want to know that they will get the right kind of care when they are adults. And we want educational strategies for them, because often autistic people bloom late, as my boy has."
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April 20-22, 2007, in Alexandria, VA
DAN! Spring 2007 Conference
"DAN!® is known throughout the world as the premier conference (for both parents and clinicians) to come and learn the safest and most effective biomedical interventions for successfully treating autism. DAN!® provides a decision making framework for addressing biomedical issues presented by individuals with autism. DAN!® brings the most credible speakers on the subject of treating autism to the podium."
April 25, at 7pm, in Kitchener
Magnificent Moms: Amy Baskin on Keeping Strong, Sane and Connected
Kitchener Public Library
Please click on title for more
2nd International Come To Your Senses Conference
Opening the Sensory World to Children & Adults with Complex Disabilities
By MukiBaum Treatment Centres
Registration is now at http://www.sensoryconference.ca/ and you can take advantage of Early Bird rates. There will be opportunities for you and your organization to exhibit, become a sponsor of the event and participate in a number of activities throughout the conference.
June 15 & 16, 2007
2007 Autism Spectrum Disorders Conference
Acceptance and Opportunities: See the Potential
A conference that will explore best practices and approaches for increasing quality of life, opportunities and independence. Save the Date! Friday, June 15 &
Member and Early Bird Registration discounts are available.
Keep an eye on www.autismontario.com for more information to be released in the coming months.
31 August, 1 & 2 September 2007, in Oslo, Norway
‘A WORLD OF POSSIBILITIES’
8th International Congress Autism Europe
Abstract submission, registration and further Congress information:
Do not miss this opportunity to contribute to take part in ‘a World of Possibilities’ for people with autism and their families, view the 4th International Art Exhibition of Persons with Autism, and to visit Oslo and its charming surroundings.
BOOKS, WEBSITES AND OTHER RESOURCES
New book by member of the OAARSN network....
Help Him Make You Smile: The Development of Intersubjectivity in the Atypical Child
by Rita S. Eagle, PhD. Rowman & Littlefield Publishers.
Cloth 0-7657-0496-X / 978-0-7657-0496-2 Mar 28, 2007 336pp. List Price: $80.00
Paper 0-7657-0497-8 / 978-0-7657-0497-9 Mar 28, 2007 336pp. List Price: $34.95
15 % off online orders. Click on title to reach publishers.
Intersubjectivity refers to the motivation and capacity to connect and share one's own inner world with that of another person. This book addresses the questions: how does this precious human communication develop in infancy, and what can or should be done when it does not develop? The author presents a unique chronicle describing the day-by-day emergence of intersubjectivity in her infant son, born with neurodevelopmental disabilities. These observations are analyzed in the context of a critical review of theory and research about intersubjectivity in normal children and in children with atypical development. From both sources emerges a model for how intersubjectivity develops in the parent-infant interaction, and guidelines for how to intervene when it does not. While acknowledging the inroads that have been made in understanding this unique human capacity, the author points to the questions that remain to be addressed in future research. The book ends with a rare opportunity to follow the trajectory of her son's capacity for intersubjectivity over a period of more than thirty years. It is addressed to theorists and researchers; clinicians who work with infants and children with developmental disorders and their families; and parents who want to understand their children's development.
Deep inside the autism enigma
Reflecting the increased awareness of ASD, The Globe and Mail gave the centrefold pages of its weekend magazine on SaturdayApril 7 to a review by Marti Leimbach of two new books. Click on title to read this review.
Minds: Remapping the World of Autism by Roy Richard Grinker
(Basic Books, 340 pages, $32.50).
Text of the ABCNews show, with useful video links.
adults with autism is usually negative. We receive many appeals for
where to turn for help--with diagnosis and assessment, advocacy,
the future, alternatives to approaches that are not working. There are
virtually no obvious sources of help for isolated adults with autism
We know that some adults and their families and caregivers are heroically using what resources they have to achieve some successes with their challenges. Some can report remarkable progress. We invite you, as an adult or caregiver living with autism, to share your perceptions, problems and success stories, if you think others might help or benefit.