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. 

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
18 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

FamilyNet  currently features stories and news about Ontario parents' efforts to obtain funding for IBI (Intensive Behavioural Intervention) for their children with autism spectrum disorders.
 

General Autism News

Autism Rise May Be A Myth
Epidemiologists Hershel Jick and James Kaye, of the Boston University school of medicine, have studied records from 280 GP surgeries with 3 million patients. They say the data show that the rise in autism cases corresponds with a decline in the diagnoses of other development disorders. From 1993 to 2000 the number of children diagnosed with autism rose 25% a year while the number diagnosed with behavioural disorders fell by 25% a year. They do not rule out the possibility that MMR or another drug might trigger autism in an individual child, but they say it cannot be responsible for the large rise.
Link to Sunday Times article by Jonathon Carr-Brown (registration required).
 

Science getting to the roots of autism
A story in USA Today about the genetic basis of ASD, illustrated by a family of triplets.
 

Autism Not Linked to Mercury
Summary of Pediatrics article in Psychology Today.
 

Brilliant minds linked to autism
A leading specialist in Ireland notes various historical figures who probably had the form of autism known as Asperger syndrome. They include Socrates, Charles Darwin, Isaac Newton, Albert Einstein, Andy Warhol, Lewis Carroll, the poet W.B. Yeats, and former Irish prime minister Eamon de Valera.
 

More Than Just A Job:
Real-world Work Program Puts Autistic Student On Path To Independence
Click for a good story
 

Concern about effects of new laws on social behaviour
Proposed definitions of anti-social behaviour in Scotland are reported to give insufficient weight to the question of intent, making little allowance for those suffering from autism. Autistic behaviour, which included repetition of strange sounds or words, a poor awareness of personal space or becoming upset at change in routine, could be mistaken for being anti-social. 
 

Mark Haddon's book wins Whitbread Novel Award
Judges praised The Curious Incident of the Dog in the Night-Time as a children's story with resonance for adolescents and adults alike. It's a murder mystery whose 15-year-old detective and narrator is a boy with Asperger's syndrome.
 

20 Ways To Ensure the Successful Inclusion of the Asperger Child in the General Education Classroom
[Intervention in School and Clinic] ByHolly R. Bullard, EdD, is an assistant professor of elementary education at Lubbock Christian University.  Read the full article
 

Autism Around the World
Autism is on the rise in India, Pakistan, Bangladesh, Sri Lanka, Nepal, Bhutan and the Maldives - the countries within the SAARC region whose leaders are currently meeting in Islamabad. Ivan and Charika Corea, parents and carers of an autistic child have launched a massive Autism Awareness Campaign in Sri Lanka. There are 30,000 autistic people in Sri Lanka, and experts predict a massive rise during the next five years all over the SAARC region. Ivan and Charika Corea initiated 2002 as Autism Awareness Year in the United Kingdom. Their campaign is now the largest ever movement for autism in the UK and has the support of the British Prime Minister Tony Blair and parliamentarians of all parties in the Palace of Westminster in London. Ivan Corea said, "We need urgent action by the Heads of State and national governments in the SSARC region to look into the rise in autism and find common ways and strategies in tackling the whole issue of autism, joint educational and health strategies, the sharing of good practice from SAARC countries. Our appeal to SAARC Leaders - please reach out to the Autistic Community in the SAARC region. Autism is a time bomb waiting to happen. If there is a rise in numbers of people with autism in South Asia, are SAARC countries in a position to provide public services for these people who have a very specific disability." See information on the Autism Awareness Campaign in Sri Lanka.

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ANNOUNCEMENTS OF EVENTS
**  ** means that a new posting--an event being announced here for the first time
 

February 18, 2004, 7-10 p.m., at North Toronto Memorial Community Centre 
Toronto Family Network seminar: 
**Education Law & The Ontario Human Rights Code:
A Review of the Ontario Human Rights Commission Report on Education**
Click for flyer
 

February 20 to 22, 2004 at the Inn on the Park in Toronto.
"Expanding Individualized Funding: The Time is Now!"
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. 
Click for updated information
Email abarbara@communitylivingontario.ca or call Barbara in the Individualized Funding Coalition office at (416) 447-4348
Click for IFCO website
 

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.
 

April 30 - May 2, 2004, at Gananoque
**The Art of Advocacy: Every Parent is an Advocate**
FAO/IAI  Annual Conference
Key Note Speaker:  Judy Finlay on "Why a strong family Voice is Essential to Advocacy
in Ontario." 
Click for full details
 

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 of Guelph 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. Click for more details and how to reach Dr Jory

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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
 

Visit the new United Family Congress website
The UNITED FAMILY CONGRESS was formed by group of parents with medically exceptional dependents during the 2003 Ontario election and as an outcome of an all-candidates’ debate held in Barrie, Ontario. One valuable feature is pro bono legal advice by Ellie Venhola, a lawyer with Community Legal Clinic (Simcoe, Haliburton, Kawartha Lakes) based in Orillia, Ontario. You are invited to sign an electronic petition in favour of Individualized Funding and the following UFC goals:

  • To ensure that each and every family caregiver and their dependants living with an exceptionality have their personal needs met.
  • To provide a forum for sharing information about issues of common concern and connect families of exceptional dependants so that they can offer each other strength, confidence and knowledge. 
  • To encourage the participation of families in each town, city and region with our mission.
  • To facilitate and promote a provincial and national collaborative, interactive relationship with all
  • exceptionality-related organizations and to participate in developing social policies based on their experience and beliefs.
  • To ensure standards of social policies for individuals living with exceptionalities are set so that all supports, services, education and treatment are accessible and in a manner consistent and compliant with the Ontario Human Rights Code and the Canadian Charter of Rights and Freedoms.
  • To promote the benefits of an inclusive and integrated society to our communities, organizations and the government.
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HELPFUL RESOURCES PROPOSED

Respite Service for Young Adults with ASD
A Guelph family is thinking of offering respite, depending on the interest by other families and caregivers. This is an outline of tentative plans:
"We would offer overnight Friday to Sunday at first.  For men about 17 to mid 20's, without aggressive behaviour and with no lifting required. It would be a 3 to 1 ratio with 1 to 1 as needed. It must be stated that there are cats in the home. Activities would include almost anything men would choose to do, including kareoke machine, several TV 's, PC and tape recorder use. We'd be open to each individual's needs. One parent was a nurse and they have fostered various ages. and we have experience with ASD, FAE, ADHD, CP and other special needs. Fees would be comparable to other respite homes."
Contact ron.haineault@sympatico.ca
 
 

Transition Ontario Project 
January 2004
Please help us create an important online resource. We want to make the
transition to adult life for youth with disabilities (16-29 years) easier.
We are making a website for the province of Ontario with the latest news
about transition to adulthood.  This will include a listserv where people
can talk and share information. People with disabilities, parents and
service providers are working together to make the website and the
listserv.  We hope everyone will be able to use this resource as well. 
This project was started by a group of service providers, parents and youth
with disabilities in 1999. They learned that we need an information
resource in Ontario that has all of the information you would like about
transition, as well as giving you a chance to share your experiences and
asking other people questions about transition.
Click for full bulletin 
 
 

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

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