ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN
6 January 2003

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

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 6 January 2003

SOBERING THOUGHTS FOR THE NEW YEAR

At the start of another new year, we note what a long way we still have to go--for people who live with autism to be better understood and supported as members of our communities. We think this applies particularly to teenagers and adults, but the families of young children can also feel alienated. 

Our mail and e-mail bring us word every day of adults and families in acute need of understanding and support. 

  • Men in their 40s, 60s or 70s who are just being diagnosed. 
  • Single-parent mothers and their children all with forms of ASD. 
  • Young adults leaving school to find no supports or services. 
  • Individuals moving from one region to another, having to prove their eligibility for the most basic disability and income supports all over again.
  • One adult with ASD feels “we no longer exist in society after age 18, or even age 12.” 
  • A mother of a teenager with autism writes: “I would like to know how many other parents of autistic individuals have been accused of refusing treatment for their child with autism after many, many years of trying to obtain appropriate services for their loved one? This is what is happening to us.”
It’s a cold, hard world out there.

Recent public inquiries have pointed to defects in “the system” more than to failures by individual carers. The inquest into the death of Stephanie Jobin, under restraint in a Brampton group home, recommended that services that should be made available to all children with complex special needs and their families must include: full-time residential support, professional in-home support, respite care in residential facilities, shared parental and foster care, and improved access to education programs for special-needs children. The inquest into the suicide deaths of a single mother and her son in Durham, England, called on agencies to develop a "despair-proof" support system for children and adults "with complex and challenging behaviour".

It should not take tragedies like these for us to see and do all we can. The Ontario Ministry of Community, Family and Children’s Services requires its funded agencies to provide “investment supports and services” early, before an individual or family reaches crisis and to avoid or alleviate the personal costs of a prolonged delay in receiving services. 

May 2003 be the year when we all try to make a real difference for all people who live with autism spectrum disorders! 
 

NOTES: 
Read the report of the Jobin inquest:

Death leap may prompt reforms: changes urged to aid care of disabled children
Martin Wainwright, Saturday October 5, 2002, in The Guardian
http://society.guardian.co.uk/Print/0,3858,4515707,00.html
 

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TIMELY CALLS FOR SOCIAL JUSTICE AND CITIZENSHIP

“Our citizenship is on the rocks: We must shed real light on the fates of those who flounder outside our society, says activist CATHERINE FRAZEE in The Globe and Mail, Saturday, December 28, 2002 – Print Edition, Page A15. She comments on Stephanie Jobin’s life and death.

JUDITH SNOW of Toronto announces the formation of the International Association for Inclusive Citizenship

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PLEASE NOTE GSA’S NEW MAILING ADDRESS

The Canada Post outlet, where Guelph Services for the Autistic used to have a mailbox, has been closed.  GSA’s new address, effective immediately is: 
GSA/Guelph Services for the Autistic
16 Caribou Crescent
Guelph, ON, CANADA, N1E 1C9

Important information for GSA members and for individuals and families interested in the ASPIRE project (or you may leave a message at 519-821-7424). This is the address to which you should send completed adult autism needs surveys by mail (or you may complete and submit by email, through the OAARSN website). 

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NEW CONTENT ON OAARSN SITE

ADULT ISSUES IN WATERLOO-WELLINGTON, joint newsletter of WWAS and GSA
Number 18, 2003 is now posted. Includes four book reviews, the story of Ontario’s first aroha, and Planning Ahead: incremental ways to plan wisely for a good life and  more secure future 

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AUTISM IN THE NEWS

1. Is there an epidemic of autism? 
The Journal of the American Medical Association has just published “Prevalence of Autism in a US Metropolitan Area,” [Atlanta] by Marshalyn Yeargin-Allsopp, MD, Catherine Rice, PhD, Tanya Karapurkar, MPH, Nancy Doernberg, Coleen Boyle, PhD, Catherine Murphy, MPH. The article can be downloaded at
http://www.freewebz.com/schafer/autismatlanta.pdf

See an editorial by Dr Eric Fombonne from the same issue of JAMA, commenting on the article and placing it in perspective of most past epidemiological studies. 
 

2. New Jersey Takes Lead In Confronting Autism
Researchers are challenging assumptions about the disorder
http://www.nj.com/news/ledger/index.ssf?/base/news-5/1041146027292410.xml
 

3. Rhode Island has a disproportionately large number of children with autism
http://www.redflagsweekly.com/storm_warnings.html
http://www.ont-autism.uoguelph.ca/www.autismautoimmunityproject.org/yaz_autism_in_rhode_island.html
 

4.'My music helps healing' 
GP Dr Ian Gilchrist is a firm believer in the power of music. He plays the piano, flute, guitar, saxophone and Celtic whistles. Once he dreamt of becoming a conductor or pianist. But now he uses his music to help heal his patients…
http://news.bbc.co.uk/1/hi/health/2385315.stm
 

5. No Ordinary Village
At first glance, the village of Aigues Vertes in the Genevan countryside looks like any other development constructed in the 1960s. But what makes it different is that its 84 residents, men and women aged between 19 and 82, have conditions such as autism or Down Syndrome. Read the whole story at: http://www.swissinfo.org/sen/Swissinfo.html?siteSect=111&sid=1543854
 

6. Computational Autism - Hope Lies In Flair For Logic
An article in “New Scientist”, July 20, 2002, describes a technique, invented by Russian researcher Boris Galitsky, to teach atistic children to interact more naturally with other people simply by “programming” them to understand how other people think. The technique makes sense, says Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University, as there is anecdotal evidence that autistic people often create their own logical rules to help them interact with others. “If you take it to the extreme it sound unethical because you are training them to perform unnaturally,” he says. “But if it works then I think it’s a good way forward.” Read Galitsky’s article. http://www.dcs.bbk.ac.uk/~galitsky/AU/Computational_autism.htm
 

7. Asperger's syndrome: the invisible disability 
"You could teach a child the theory of relativity once and he'd get it. But you'd have to tell him the rules for lining up for recess 500 times." Margot Nelles, founder and chair of the two-year-old Asperger's Society of Ontario, quoted in an article published in Professionally Speaking, journal of the Ontario College of Teachers. Situations in the Peel District School Board are also discussed.
http://www.oct.on.ca/en/CollegePublications/PS/december_2002/aps.asp
 

8. American Normal: The Hidden World of Asperger Syndrome
Review of a new book by Lawrence Osborne. Copernicus Books. 288 pages
People with the rare condition called Asperger Syndrome can be brilliant, but they're unable to read the human face or the simplest social cue. 
Reviewed by Stephanie Zacharek.
http://www.salon.com/books/review/2003/01/06/osborne/?x

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ANNOUNCEMENTS OF EVENTS

See details of more events on our Bulletin Board and Calendar:
http://www.ont-autism.uoguelph.ca/bulletinboard_new.shtml#conferences

just posted....
TREATING THE BIOLOGY OF AUTISM 
An Approach to Interventions for Spectrum Disorders 
Presented by the Autism Society of America - Oakland County Chapter 
March 29-30, 2003, Pontiac, Michigan

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ISSUES AND ADVOCACY

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

Speak up for individualized funding as a basis for a good life and a more secure future for our friends who are vulnerable because of disability.

INDIVIDUALIZED FUNDING IN ONTARIO: STATEMENT OF PROBLEMS AND RECOMMENDATIONS presented to the the Hon. Brenda Elliott, Minister of Community, Family and Children's Services, by the Peel Family Network on Nov. 19, 2002. 

All families and friends with an interest in individualized funding as a basis for a good life and a more secure future are urged to write to the Minister, saying something about your own circumstances and how you know IF will help your daughter or son or friend. It's important to do that very soon---this week---as budgets will soon be set for the 2003-2004 fiscal year. Quite brief letters of support for IF, from hundreds of families across Ontario, will have an impact.

The address of the Minister is:
The Hon. Brenda Elliott,
Minister of Community, Family and Children's Services,
80 Grosvenor Street,
6th Floor Hepburn Block,
Toronto, ON M7A 1E9

Note that you may email your letter directly to the Minister.
Click on http://www.gov.on.ca/CSS/page/minister.html to find an email window where you may express your support of IF. 
It would be helpful if you could send Stan Woronko a note that you have written to the Minister. His email address is sworonko@SYMPATICO.CA

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING 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.

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

Enjoy photographs of the wonders of nature by OAARSN network member, Minna Mettinen of Whitefish. Ontario. 
http://members.tripod.com/mueller_ranges/minna/minna_index.html

Minna has also shared instructions for making a weighted blanket.

Some Internet resources by and for folks who live on the front lines

UNLOCKING AUTISM offers the UA-ADULTS-WITH-AUTISM group at Yahoo! Groups, a free, easy-to-use email group service for adults and older teens with Autism Spectrum Disorders, or for their parents or direct caregivers. To learn more, please visit:
http://groups.yahoo.com/group/UA-ADULTS-WITH-AUTISM
You may choose various options from receiving every individual message to digest packages of messages.

ENZYMES AND AUTISM FORUM for the discussion of digestive enzymes (and many other types of supplements) and how their supplementation affect those dealing with conditions of the autistic spectrum/PDD, attention deficit, digestion/malabsorption, food sensitivities/allergies and other uses.  http://groups.yahoo.com/group/enzymesandautism/

DANA'S VIEW
Dana has Aspergers and two children on the autism spectrum.  Her website is a great resource. 
This is her page on digestive enzymes:  http://www.danasview.net/parent3.htm#diet
A page on chelation: http://www.danasview.net/parent3.htm#chelation
And her "adult issues" page: http://www.danasview.net/adultinf.htm
 

 

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