ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   5 July 2007


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GENERAL AUTISM NEWS


World Autism Survey--preliminary results
A compilation, with colourful charts, of responses to the survey launched in September and posted online until June 2006. The World Autism Survey was conducted by the Autistic Citizens Residential and Resources Society of Victoria (ACR and RSV), based in Melbourne, Australia and launched at the NAS International Conference in 2005.
The aim of the World Autism Survey was to obtain information regarding the level of support and available services from Government agencies and community sources for people with an ASD. The online survey delivered over 1,800 responses from 53 countries, many from the UK. 
The survey has thrown up some interesting results, many of which confirm the experiences of people with an autism spectrum disorder (ASD) in the UK. Nearly 60 per cent of respondents said that specialised day services for adults with autism in their area were available in limited locations or in a few locations only, with a further 33 per cent saying they were not available at all. That implies over 90 percent of people have limited or no services available to them.

Successful futures for adults with autism
Report of a collaborative autism research forum, 28th November 2006 at the London South Bank University, organized by Research Autism an arm of the National Autistic Society UK.



At OAARSN, we are always being asked by adults how to get assessed. It would be wonderful to pool a list of resources in Ontario. We might have something like this as a start, then a list of recommended professionals? Any suggestions?
Screening measure for autism in adults

A tool developed through the Greater Manchester Consortium (UK) to develop local services for people with autism and intended for use in any setting or service for adults. The sole purpose of this measure is to screen for the presence of indications of autistic spectrum conditions which may suggest the need for further assessment. It is not a diagnostic tool and The National Autistic Society (and OAARSN) take no responsibility for any misuse of this measure other than its intended purpose.


Summary of Biomedical Treatments for Autism
Autism Research Institute's new website features this summary of nutritional and biomedical treatments tried and evaluated by hundreds and thousands of families.


Autism symptoms reversed in lab
US scientists created mice that showed symptoms of Fragile X Syndrome - a leading cause of mental retardation and autism in humans. They then reversed symptoms of the condition by inhibiting the action of an enzyme in the brain. The study, by Massachusetts Institute of Technology, appears in Proceedings of the National Academy of Sciences.


Autism, other illnesses may be linked by genes
Autism, schizophrenia and manic-depressive disorder may be linked to several of the same genes, scientists said in a study that may spark a search to identity such genes as a prelude to seeking new treatments. About 20 percent to 60 percent of gene variants that raise people's risk of autism, a mysterious brain disorder, also increase vulnerability to manic-depressive illness, according to the study, led by Andrey Rzhestky, a University of Chicago computational biologist. The findings, to be published this week in the Proceedings of the National Academy of Sciences, come from a statistical analysis of the symptoms and characteristics of 1.5 million patients with 161 diseases. The study may also guide researchers who are trying to find the underpinnings of conditions such as diabetes, heart disease and Alzheimer's disease.

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ANNOUNCEMENTS OF EVENTS

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.
Please provide details of the following as BRIEFLY as possible: 
 
Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event
 Contact information to learn more about event
 URL Link for more information/registration 

 Please Do Not Send Files Or Brochure Attachments

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SPECIAL INVITATION

Guelph Enabling Garden offers opportunities
The Guelph Enabling Garden (GEG) is a multi-use garden designed for children, the elderly, families, but especially for those community members with varying degrees of physical and cognitive abilities. Its key features are:
·                            Accessibility
·                            Sensory Interest (sight, sound, smell, touch)
·                            Reflective areas as with any garden
·                            Active programming so the experience of gardening is made available to all segments of the population
Visit the website  and note the various teaching sessions and workshops.
To register, please contact: Lea Tran 519-993-5323 or lea@green-ideas.ca

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11 July 2007, at 6:30pm in Toronto

RAUN KAUFMAN, of The Autism Treatment Center of America
in the Parents Listen Speaker Series
Ryerson Business Building
55 Dundas St W, Toronto
Contact: parentslisten@gmail.com



15 July, all day, in Kitchener
"Caring for the Caregiver" Day--FREE!
Organized by a Shiatsu therapist who is also the father of a child with special needs. Participants will be able to experience a variety of self-care activities such as yoga, t'ai chi, laughter yoga, shiatsu therapy etc.
For more information, see www.bubblingsprings.org.
To register, contact Robin Grant (519)569-7474 or email info@bubblingsprings.org.


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:
http://www.autismcongressoslo.org

E-mail: president@autismeurope.org
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.

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SPECIAL CALL


YOUNG ADULT SIBLINGS INVITED FOR NEW RESEARCH STUDY
Males and females who have autistic siblings are needed for a research study. Requirements are that they are between the ages 18-37 and have no known diagnoses of autism spectrum disorders or mental illness or developmental delay.  Diagnosis of the sibling may be Autism or PDD NOS, not Aspergers. Participation  requires filling out a questionnaire and then mailing it back to me. It can even be done via email. It will take approximately 40 min. Please contact me at clanda77@aol.com with the subject line Autism Research, Canada.
Thanks in advance
Carrie Landa, M.A., PhD Candidate
Suffolk University
Psychology Department
41 Temple St.
Boston, MA 02114

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BOOKS AND OTHER RESOURCES

An interview with autistic FC pioneer, Richard Attfield by the famous autist Donna Williams
Richard, who lives in Essex, England, is editing a volume of compositions by about 100 people who use supported typing to communicate their thoughts. Richard distinguishes two aspects of FC or supported typing (the term he prefers), "a fact which people do not really take on board. One is the ability to be able to physically type. And this is the area where the majority of people have extreme difficulty. The other issue is the ability to be able to communicate by the written/typed word.........
"I am passionate advocate of fc because I have lived the experience of being denied equality, an equal education, and being labelled retarded, and learning disabled and also being unable to communicate via speech to hold a conversation."


Interview with Ralph James Savarese, author of Reasonable People: A Memoir of Autism & Adoption
Savarese tells the remarkable story of his adoptive son. Judged profoundly retarded, abandoned by his parents and abused in foster care, DJ could not communicate when Ralph and his wife, Emily, found him at the age of six. Today, at 14, he expresses himself through a computer, has been successfully mainstreamed in public school, and appears with his father and mother at autism conferences nationwide. Savarese, a literature professor at Grinnell College in Iowa, is now a committed activist on behalf of people with autism. He is also a proponent of Facilitated Communication, a technique that has profoundly changed his son’s life as a tool in promoting literacy and eventually communication.


ARI Packs New Web Site with Help for Families

A powerful new website addressing the challenges of autism is now available at www.autism.com, developed by the Autism Research Institute (ARI) with the goal of convincing parents and caregivers that autism is a treatable condition. 
"Not only does extensive research and our experience show that autism is treatable," said ARI director Dr. Steve Edelson, "but we believe recovery from autism is possible - and drugs are not our only option."
See, for example, this summary of nutritional and biomedical treatments tried and evaluated by hundreds and thousands of families:
http://www.autism.com/treatable/adams_biomed_summary.pdf

A GP's guide to adults with Asperger syndrome
This guide explains what Asperger syndrome is and provides questions to consider when talking with adult patients who may have the condition.

Another review of
Unstrange Minds: Remapping the World of Autism

by Roy Richard Grinker; New York, Basic Books, 2006, 340 pages, $26.95
Read Book Review by Yael Dvir, M.D.
"Unstrange Minds is a well-written, carefully presented work of scientific research, looking at the cultural implications of autism. It manages to address key points about autism today, both internationally and very personally. I believe that anyone touched by autism, whether physician, psychologist, teacher, or parent, should read this book."



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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING PERCEPTIONS AND EXPERIENCES

News about adults with autism is usually negative. We receive many appeals for advice on where to turn for help--with diagnosis and assessment, advocacy, planning for the future, alternatives to approaches that are not working. There are virtually no obvious sources of help for isolated adults with autism and their caregivers.

The Four Stops: a recent posting on Brian Henson's blog
Brian's blog is titled Autistic Input, explained as follows: 
"An outline of the need for those around autistics to have more than just awareness and acceptance, but also input--from autistics themselves, leading to further integration, with the balance of privacy, solitude, protection, and diversity. Input, itself, is but one step in the progress (or phase in the process) with success not being measured or counted but felt in the soul of the autistic individual and those providing affection, affirmation, and assistance for that individual."
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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

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MORE ABOUT OAARSN

See our
archive of past OAARSN news bulletins.
Read about why OAARSN was started and the tasks still ahead


You may be interested in our Creative Supports Bulletins which carry news about disabilities and special abilities and creative strategies more generally. See for example:  http://www.ont-autism.uoguelph.ca/CS-20060720.html

Send news, announcements and comments to gbloomfi@uoguelph.ca We welcome news items, announcements of autism events, new information, discussion questions and comments, and accounts of experience.

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to
ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.

Please provide details of announcements as BRIEFLY as possible: 
 Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event
 Contact information to learn more about event
 URL Link for more information/registration 

 Please Do Not Send Files Or Brochure Attachments if you have an online version to which you can provide a link.

Visit OAARSN's website and keep in touch through the OAARSN Listserv--send a message requesting to join to gbloomfi@uoguelph.ca