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

See our archive of past OAARSN news bulletins.

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.
 

NEWS BULLETIN
8 January 2004

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NEW CONTENT ON OAARSN'S WEBSITE

Please note the wealth of news, announcements and other links in past OAARSN News Bulletins that are archived on our website. Click for the list of earlier OAARSN bulletins.

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AUTISM IN THE NEWS

Canadian News

Very Sad News
With many others, we are shocked and saddened by the sudden death of Malcolm Jeffreys on 18 December 2003. Malcolm came to Canada in 1967 and spent his career working with persons with developmental disabilities and their families. For the past 15 years Malcolm served as Executive Director of Community Living Windsor where he took immense pride in the accomplishments of his colleagues. Malcolm was a powerful and nationally respected advocate for those who needed support. Both visionary and practical, he empowered many adults with disabilities (including autism) and their families to build better lives. Recently he taught part-time at Ryerson University, where he enjoyed the youth and vitality of his students. Read more details and tributes

Ontario minister calls autism high priority right now
An exclusive interview with Dr. Marie Bountrogianni, Minister of Children's Services on FamilyNet
See also the FamilyNet story about Nancy Morrison's efforts to increase political awareness of the need for Government funding of early behavioural intervention.

Child's autism inspires creation of support centre
The story of Precious Minds, that has provided money, professional resources and respite to more than 500 families of children with learning disabilities in North Durham. Elisabeth Graham, co-founder and executive director, has a 10-year-old son with  autism.
 

General Autism News

MMR R.I.P.?
"A conspiracy of silence or paranoid scaremongering? Is the MMR vaccine a cause of autism — or is it a vital health programme undermined by this medical maverick?" A major review by Robert Sandall for The Sunday Times Magazine, posted in the Schafer Autism Report archives.
The UK Department of Health has a website devoted solely to refuting Dr Wakefield. 
Click for an American review of the debate over toxic exposure.

Repligen autism drug fails in trial

Autistic man wins court fight
A man aged 23 is set to receive substantial damages from Greenwich council after it failed to give him the education he needed. If he had received an appropriate education, he might have been able to work and lead an independent life.

Walls of M.I.N.D. Institute graced by autistic art
The UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute is also publishing a book entitled, "Art of the M.I.N.D" that captures the talents of these creative artists of all ages, from throughout the world. 
See more details and order form

The Tender Trap: Parents Devoted To a Disabled Child Confront Old Age
"Donald Tullis, 84 years old, wakes each morning in the room he shares with his youngest son, Tim, who is and autistic..... [In the United States] 670,000 older parents -- those 60 years
plus -- continue caring for their disabled adults children because they are afraid not to. Relinquishing care of a fragile child prone to violent seizures or terror of the unfamiliar is difficult even as it becomes physically harder to provide. And in spite of  the progress of the past 40 years, there are still limited options for the disabled once they pass through mandated education programs, which generally stop when they reach the age of 21."
By Clare Ansberry for The Wall Street Journal. As unavailable online without subscription, here is our link 
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ANNOUNCEMENTS OF EVENTS
**  ** means that a new posting--an event being announced here for the first time
 

Telehealth Course on Assistive Technology
Five weekly sessions from January 16 to February 13, 2004
Click to learn more and to register
 

Friday, April 23rd, 2004, in Toronto
**The 5th Annual New Haven Learning Centre Conference**
Manulife Financial Building, 200 East Bloor St.
Keynote Speaker: Dr. Patricia Krantz, Executive Director, Princeton Child Development Centre
Other presenters will include Dr. Joel Hundert, Dr. Len Levin, and Dr. Bridget Taylor.
Registration information to follow.
 

May 27 – 30, 2004, in Chicago
**Autism One 2004 Conference**
"the Most Comprehensive Conference on Autism Ever Assembled"
Click for more information
Click on website

See details of more events on OAARSN Bulletin Board and Calendar, and our archive of past OAARSN news bulletins.

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

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ANNOUNCEMENTS OF SPECIAL PROJECTS 

Study on Nutritional/Biochemical Abnormalities
in Newly Diagnosed Young Children with Autism

Joan Jory, MSc, PhD, RD has received a research grant to investigate differences in the nutritional/biochemical status of children with autism compared to children without autism. It is hoped the results of this research will support parents, physicians and practitioners in better
understanding some of the unique nutritional needs of children with autism, and possible links with autistic symptoms.

The researchers are looking for 35 children with autism between the ages of 2 and 5 years.  It is essential that participating children have had NO diet intervention or vitamin/mineral supplements prior to this study as these interventions will alter the results and invalidate the study findings.  Therefore, recently diagnosed children are preferred but any children who fit the age criteria and have NOT had dietary or supplement intervention are welcome to apply for participation.

Participation in the study involves a one time fasting blood test.  Half of the blood will be sent to London Health Sciences Trace Elements Lab for assessment of trace mineral status, and half will be sent to the Lipid Analytics Lab at the University of Guelph for assessment of fatty acid status. These tests are not OHIP covered, and would cost more than $200 for non-participants.  Parents will receive copies of all the blood results for their children at the end of the study.  Additionally, parents will be required to fill out a short background questionnaire and three day food diary.

All parents interested in participating in the study are encouraged to contact Joan Jory directly at her office 519-829-5514 or by email jj_guelph@hotmail.com.
(Please note: Joan Jory is an independent nutrition consultant, researcher and registered dietitian).
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ISSUES AND ADVOCACY

See also: Funding Issues--in OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area
 

"Expanding Individualized Funding: The Time is Now!"
February 20 to 22, 2004 at the Inn on the Park in Toronto.
The goals are:
- To develop an action plan for implementing IF in Ontario; and
- To develop strategies for building the capacity of families & communities for citizenship & IF.
Key stakeholders from all parts of the province are invited to think carefully about who needs to be invited in order to create and train a diverse, energetic and motivated leadership team. 
Email abarbara@communitylivingontario.ca or call Barbara in the Individualized Funding Coalition office at (416) 447-4348
 Click for the IFCO website

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HELPFUL RESOURCES PROPOSED

Emergency Response and Crisis Intervention: 
Project Overview by Nancy Cherry of Waterloo

During most of 2003, Nancy Cherry of Waterloo worked on a project of great importance to the autism community. Its goals may be summarized as:
1. Developing a template for calling 9-1-1 should the primary caregiver be unable to make the call
2. Registering with the police so that when a 9-1-1 call is placed there is an electronic alert displayed that gives background information 
3. Registering with the local hospital or crisis clinic to avoid the intake procedure when dealing with an out-of-control individual who has special needs and may be non-verbal
4. Finding a tracking device to monitor children who regularly wander (and adults who want to develop more independence of movement). 

Among other initiatives, Nancy has researched various possible devices and systems, that would combine all or most of the above features. In one scheme, it could be possible to get a substantial donation of the Research and Development funds if at least 500 families or caregivers pledge to be subscribers at a cost of say $50 per month. 
Read a more detailed report

ASO chapter members were to be contacted by their presidents about this and asked to respond immediately. OAARSN contacts may not have been reached by this means. If this resource could help any sitaution you know about, please contact Nancy at phone (519) 884-3309 or email her at nancy.cherry@sympatico.ca
 

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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

I'm a lawyer in NM. I've been asked to help a person who has Asperger Syndrome (AS). He has passed the Bar exam, but is evidently being prevented from getting a license due to his AS. I'm pretty well aware of the legal issues and approaches, but I need help in convincing the lawyers in charge of Bar admissions that (if I'm correct) AS and the practice of law in one form or another are not necessarily mutually exclusive. 

I'd therefore appreciate being contacted directly by lawyers who have AS, and who would like to share their experience as part of our admission campaign for this person. 

I am doing this entirely pro bono. To respect and preserve the non-commercial aspect of this forum I will not accept as a client -- paid or otherwise -- anyone who learns of me through OASIS. Also, I will not "cold call" any lawyer who is identified via this forum. Please directly solicit the participation of any lawyer you may know about, and have him or her contact me at getherb@silverberglaw.com  If for some reason the lawyer doesn't have access to e-mail, you may e-mail me on his/her behalf and I'll call or send snail-mail, as that lawyer may prefer. 

Thanks for your patience with this long post, as well as for all contacts you may be able to generate.
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