ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
OAARSN offers a rich and expanding collection of up-to-date information and communication tools that can put you in touch with others. We can all benefit from the opportunities for mutual support, encouragement and information sharing. We hope that OAARSN's efforts to promote positive approaches and best practices in supporting adults with autism can help all who live and work on the front lines. Click on OAARSN's main page

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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 note that this service is for information and awareness. We cannot endorse or be held responsible for the validity of any information or the value of any therapy or service. 
 

 
NEWS BULLETIN
  25 July 2004


ASPIRE PROJECT: Autism Support Project: Information, Resources, Empowerment
Click for ASPIRE page, including two updates in July 2004

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General Autism News

Largest autism study ever conducted using DNA array technology to scan human genome
The National Alliance for Autism Research (NAAR) today announced the launch of the NAAR Autism Genome Project, the largest
study ever conducted to find the genes associated with inherited risk for autism. NAAR has recently committed $6.2 million to fund 40 research grants and fellowships in the U.S., Canada and Europe focusing on a wide range of disciplines, including the neurosciences, language and communication, behavioral sciences and genetics. Read another story about NAAR and a BBC account

UK autism study launched
The Medical Research Council (MRC) has given a team from Bristol University £400,000 to study autism using data from the Children of the 90s study, a long-term project assessing the impact of environment and genes on the developing health of 14,000 children. The project is one of four into autism supported by the MRC from funds that were allocated to take forward recommendations of the 2001 MRC Review on Autism, which was partly a response to concerns raised by Wakefield.
The other three projects include a collaborative brain imaging study, led by Declan Murphy at the Institute of Psychiatry, King's College London, and studies led by Kate Nation, at the University of Oxford, and Tony Charman, at the Institute of Child Health, to understand more about how cognition relates to behavior in people with autism spectrum disorders.

Autism antibodies are not genetically determined, as parents do not exhibit them
"Autism produces a widespread range of antibodies that act against brain tissue and one protein in particular seems to be the major target of these antibodies claim a group of scientists in the July issue of the Journal of Neuroimmunology. The researchers also show that these antibodies are not genetically determined, as parents of affected individuals do not exhibit them, and so are probably not involved in disease appearance. Immune abnormalities, including antibodies against the central nervous system, have previously been associated with autism but this is the first study that unequivocally proves such a correlation as earlier findings relied on analyses of a small number of individuals and did not contain appropriate controls."
MMR Vaccine, Thimerosal And Late-Onset Autism (Autistic Enterocolitis): Review Of Evidence Of Vaccine/Autism Links
"A briefing note, put together by the parent of a child who became autistic after immunisation, sets out the concerns of parents whose children have degenerated into an acquired-autistic state after MMR or other vaccines, and attempts to summarize the debate over thimerosal (or thiomersal) preservative used in vaccines other than MMR, and to highlight possible links between this mercury-based preservative and autism. It is possible that the MMR and thimerosal factors overlap in the cause of late-onset degenerative autism.
This briefing does not attempt to cover every single piece of the available scientific literature for or against an MMR/autism or thimerosal/autism link, but it lists or reviews 231 of the most recent, most pivotal, or most frequently-quoted studies and papers. Its key finding is that there has not been a single credible study that can robustly refute the claims of the parents that their children’s acquired autism has been caused by MMR or related vaccines. Each of the studies that seeks to “disprove” an MMR/autism link can be argued to be flawed in design or ambiguous in results. These flaws are discussed in detail in the text."
The entire document can be downloaded at http://www.sarnet.org/lib/7-04Bnote.zip It is in zip format.

Vaccine Liberation Information
Links and Downloadable Exemption letters, forms, statements and affividavits to legally abstain from vaccination.


Latest report shows continued decline in new autism diagnoses
"SafeMinds -- America's leading scientific organization investigating the risks that mercury-containing medical products pose to children -- is cautiously optimistic over a third consecutive report from the California Department of Developmental Services
(DDS) showing a decline in new requests for autism related services. This latest report continues to bolster expectations that the removal of Thimerosal from infant vaccines and products administered to RH negative mothers during pregnancy would result in a decline in the number of cases of mercury-induced autism in children."
Understanding the Face of Autism
A "groundbreaking study which aims to identify whether the difficulties with social interaction often experienced by individuals with autism are related to a difficulty in interpreting the emotional content of faces."

6 Facts you need to know about autism
A popular account in the July 2004 issue of Parents magazine.

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AUTISM BOOKS AND OTHER RESOURCES

"Refrigerator Mothers" Documentary Again On Air July 27 On PBS
The award-winning documentary film "Refrigerator Mothers" can be seen again on PBS on July 27, 2004. The film, which was developed by J.J. Hanley, the parent of a child with autism, "explores the legacy of blame, guilt and self-doubt suffered by a generation of mothers," who during the 1950s were blamed for their children's autism and labeled "refrigerator mothers." The captivating documentary tells the story the story of autism from the early years to the present time and includes archival footage from old training films, interviews with ASA leaders, such as founder Bernard Rimland, Ph.D., and interviews with several parents of children who attended the school created by Bruno Bettelheim who popularized the "mother blame" theory. It is set to be re-broadcast on July 27 at 10pm (EST) on PBS; however, check local listings.

Autism Spectrum Disorders: The Complete Guide, by Chantal Sicile-Kira
Vermilion, 2003, 224 pages, ISBN: 0091891604
A quotation from the author, recommended by Nancy Miles:
"Everyone is capable of learning. It's up to us to figure out how."
Click for reviews
Read an extract

Mental health in people with autism and Asperger syndrome: a guide for health professionals, by Christine Deudney
People with ASD are particularly vulnerable to mental health problems such as anxiety and depression, especially in late adolescence and early adult life. This book emphasises the diagnosis and treatment of depression, anxiety and obsessive compulsive disorder and catatonia. This makes it important reading for health professionals, as well as
people with ASD, their families and carers.
Published by The National Autistic Society (UK), 2004, A5, 16pp, pbk ISBN 1 899280 44 8  Code NAS 514 Price £1.50

"now you know me think more": A Journey with Autism using Facilitated Communication Techniques, by Ppinder Hundal and Pauline Lukey.
Jessica Kingsley Publishers (2003). 64 pages.  ISBN: 1843101440

An Asperger Dictionary of Everyday Expressions by Ian Stuart-Hamilton
Jessica Kingsley Publishers (2004). ISBN 1-84310-152-1
"Addressing an important aspect of social communication for people with Asperger Syndrome, who use direct, precise language and ‘take things literally’, this dictionary of idiomatic expressions aims to dispel any confusion that arises from the misinterpretation of language. This book provides explanations of over 5,000 idiomatic expressions plus a guide to their politeness level. Each expression is accompanied by a clear explanation of its meaning and when and how it might be used. The expressions are taken from British and American English, with some Australian expressions included as well. Although the book is primarily intended for people with Asperger Syndrome, it will be useful for anyone who finds problems understanding idiomatic and colloquial English. An essential resource and an informative read, this dictionary will assist in a wide range of situations."

Autism Animations
Copyright oddizm 2004. "You can borrow them if you want to put one or both on page that promotes RESPECT for autistics. Any use that may be seen as mocking is not permitted."

An Online Source of Clothing etc with ASD Affirmations
Recommended by an OAARSN network member

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RESEARCH PROJECT
Please note that the experience of parents of older autistic persons is also relevant in the following project
PARENTS:YOUR OPINION IS NEEDED!

I am a graduate student in Child Clinical Psychology at the University of Windsor and am conducting a study on parents’ experiences getting an autism diagnosis for their children. If you are the parent of a child with an autism spectrum disorder, I would like to know about your first concerns about your child’s development, your experiences getting professional help and your opinion about how the autism diagnostic system can be improved. Participating in the research is anonymous; you do not have to give your name. You have the choice of receiving a questionnaire in the mail or completing a telephone interview at your convenience. This research is being supervised by Dr. Marcia Gragg, Ph.D., C. Psych.

If you choose to participate, you will be included in a draw for 100$
Please contact Alison Spadafora at 944-8180 or spadaf6@uwindsor.ca

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ISSUES AND ADVOCACY

Autism and Ostracism in Canada: an open letter to PM Paul Martin
Michelle Dawson of Montreal, an adult with diagnosed autism, argues that people with autism are not respected and included in decisions about their rights and well-being.

Programs and Services for Persons with Intellectual Disabilities
A report about Ontario conditions prepared by C. Tess Sheldon for ARCH: A Legal Resource Centre for Persons with Disabilities.


Local Health Integration Networks
A message from the Ontario Minister of Health, George Smitherman.

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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 
 Please Do Not Send Files Or Brochure Attachments


July 26, 2004
,
in Collingwood Public Library
Shirley Sutton presents on
Make ‘n Take Fine Motor Fun, Cognitive Tasks

Contact:  Martha Sutton  705-445-8069 sutt1850@wlu.ca



Sunday, August 22, 2004

Cambridge Chapter of Autism Society Ontario announces
its first annual golf tournament in support of individuals with autism and their families.
This dedicated group of volunteers supplies information, provides parent support, and advocates for programs and services to benefit the local autism community.

Grand Valley Golf & Country Club, 1910 Roseville Rd, RR#2, Cambridge ON N1R 5S3, (519) 623-8811
Shotgun start at 7:30 am, registration begins at 7am. Best ball format.

Fee of $75 per person includes 18 holes of golf, a power cart, buffet luncheon and a $20 charitable tax receipt.
Please make cheque payable to “Autism Society Ontario –
Cambridge Chapter” and mail to 160 Hespeler Road,
Cambridge, ON N1R 6V7 no later than Friday July 30, 2004.  We are limited to 144 golfers so please register early.

For more information: Barry at (519) 621-5501 all5ames@globalserve.net



Sept 13  2004
, in Barrie
Shirley Sutton presents on
Visual-Kinesthetic Printing  Skills: Preparing for Kindergarten and Primary level

Contact : Achimota Centre for Children with Autism (ACCA) Barrie 705-735-2336. achimota@vianet.on.ca

 


Friday, 01 October, 2004, 9:00 a.m.-4:30 p.m., in Woodbridge
 

PRESENTATION BY DR. SIMON BARON-COHEN
Click for full information



*Oct 1/ 2, 2004, in Ottawa
Shirley Sutton presents on
Sensory Strategies,  Oral and Fine Motor Fun Make & Take.

Contact: Children at Risk Ottawa On  carsup@magma.ca



October 15 and 16, 2004, in Toronto
Communication Disorders and the Whole Child 
SPEECH FOUNDATION FALL SYMPOSIUM
See more information



Oct 17-18, in Hamilton
Canadian National Committee for Police/Mental Health Liaison

3rd Annual Psychiatrists in Blue conference. Click for details


Oct. 22, in
Victoria BC.

Shirley Sutton presents on
Making Sense of Sensory Integration

Contact: Autism Awareness Centre Inc. wendy.casdc@shaw.ca



October 22, 2004
- in Toronto (Victoria College): 10am -12:30
Building Blocks for Gluten Free Living - workshop for professionals
S
helley Case RD, one of the leading experts in celiac disease, will present to professionals on Celiac Disease and the Gluten-free diet. Sponsored by Kingsmill Foods. Please click here for workshop brochure

October 23, 2004 - in Toronto (Victoria College): 9am to 4pm
Building Blocks for Gluten Free Living - our first customer workshop, sponsored by Kingsmill Foods. We’ll have guest speakers, a book signing and gluten-free samples galore. It’s a must-attend for all people with gluten-free needs. Shelley Case, dietitian and author will be our keynote speaker followed by an esteemed panel of professionals who will address our customers most burning questions. SFS will have a "burning question" drive in which customers can e-mail us at sfs@sickkids.ca the questions they want answers to. Our panel of professionals--Dr. Peter Durie MD FRCPC, Shelley Case RD, Mary Barron MSc RD and Heather Butt PHEc--will present the Top 10 Questions posed by our celiac customers. All registrants will get an information package, refreshments and lunch (made by Il Fornello) on the day of the event.  Please click here for workshop brochure.
Registration is set up for all these events on "Shop On-line".  Space is limited for all our workshops, so plan to register early to secure your spot. This information is also available on www.SpecialtyFoodShop.com, on Shop On-line, then Workshops



Nov. 6, 2004
, in York Region

Shirley Sutton presents on
Sensory Oral and Fine Motor Fun Make’n Take

Contact:  Autism Society Ontario- York Region. Lynda asoyork@axxent.ca


Geneva Centre International Symposium
is scheduled for November 10, 11, 12, 2004 at the Metro Toronto Convention Centre.

The Symposium 2004 brochure has been mailed out and is also available on our website.
This year you have the option to register on-line at www.autism.net

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FROM THE FRONT LINES: 

CALLING FOR HELP AND SHARING EXPERIENCES


News about adults with autism is usually negative. OAARSN receives 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.

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 problems and your success stories, if you think others might help or benefit.If you wish, we will not publish your name or email address. You may send a message to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page



 
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