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
26 September 2003

NEW CONTENT ON OAARSN'S WEBSITE 

Where have all the adults gone?

We were recently invited to prepare a display and brochure on Adults with Autism  for the Ontario Ministry of Education's conference on Teaching Students with Autism: Enhancing Capacity in Ontario Schools. Click for the full text. We included a table of the estimated prevalence of autism in various age-groups of the Ontario population, according to two rates--"classic" autism or 1 in 2,222 of the population (the rate assumed until the past few years) and the wider concept of autism spectrum disorders affecting 1 in 150 people. If we use the classic rate, an estimated 3,780 Ontario adults are affected (compared with 1,350 children and teens up to age 19). If we consider the wider autism spectrum, there could be more than 56,000 adults compared with 20,000 children and teens. 

We all hear a great deal about the needs of autistic children and OAARSN supports the claims of early and effective intervention strategies for them. But why don't we hear about, and why are we not concerned with, all the adults who must outnumber the children? 

During the summer, some of us wrote in support of efforts to release a man with autism from Centrapoint in Saint John. OAARSN also receives appeals on behalf of other adults with autism who are incarcerated, receiving no helpful treatment, and (in the opinion of family and friends) regressing. Examples in Ontario include men in North Bay and Niagara Region, and we have heard of others in the US. This bulletin's From the Front Lines section features the story of efforts by the Cucek family of BC for their son James (18).

It makes some difference when family members are involved in the advocacy efforts. However, once a dependent person comes under the jurisdiction of the courts or of the Ontario Public Guardian and Trustee (or its equivalent elsewhere) and spends months or years in some form of incarceration, it is very hard to make any change. For one thing, the person may have regressed so far that everyone may be too frightened to try a more humane approach. 

A concerted strategy is needed, involving family, friends, advocates, humane professionals, to create a much better living environment and opportunities for self-expression and relationships with friends. We suggest that our concept and mechanism of an aroha--an incorporated entity for personal empowerment and support--could help to provide the safeguard that the authorities would want to permit a change. Resources would be needed to create all elements of an better life. But the financial costs would be lower than continued incarceration and justified by the chance to give a better life to someone tortured by frustration, pain and isolation.

Certainly, proactive use of  person-directed plans, circles of friends and family, individualized funding, and aroha entities of personal empowerment and support, could save significant numbers of vulnerable adults from the desperate plights that are now being reported. 

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Please note the wealth of news, announcements and other links in the weekly OAARSN News Bulletins that are archived on our website. Click for the list of earlier OAARSN bulletins
and find the most recent: 
June 19, 2003
June 29, 2003
July 12, 2003
July 21, 2003
July 28, 2003
August 4, 2003
August 11, 2003
September 7, 2003 
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AUTISM IN THE NEWS

GENERAL AUTISM NEWS

Scientists highlight X factor in autism
"A part of the brain that is key to reading expressions in people's faces and which is affected by the X chromosome could give a new insight into the causes of the disease..."

How does the autistic brain work?
An autistic teen helps brain researchers take on the mysteries of mind. From the PBS program Closer to Truth.

Sleep problems in children with autism
From The Exceptional Parent, August 2003

Mayo Clinic study shows melatonin helps alleviate violent sleep disorder symptoms

Autism Europe EYPD 2003  AWARENESS CAMPAIGN NEWS
Now on the GOOD PRACTICE Forum: HUMAN RIGHTS and LEGISLATION DISABILITY AND NON-DISCRIMINATION LINKS. Legislation at international and national level exists to defend the Human Rights of people with disabilities and, in the case of discrimination, provides the grounds on which to demand that Standards of Good Practice become the norm rather than the exception.
Visit the new interactive pages of the GOOD PRACTICE Forum.  Find out about Human Rights and Legislation and post your comments. This forum and the Lisboa 2003 - Calls for Questions Forum will close at the end of September. Take this opportunity to help to improve the quality of life of people with autism and their families by making your voice heard. 

Charlotte Moore's final Mind the Gap column for The Guardian, based on her experience with autism in two of her three sons. She is writing a book, to be published in 2004, about autistic children.

Doctors fail Asperger's patients
A report from Britain that begins: People suffering from Asperger's syndrome are not getting the help they need because doctors are not accepting the diagnosis.

Does school bullying lead to crime?
Bullying is often more than a prank by a child who’s going through a phase. Rather, it can wreak havoc on victims and be a warning sign of more troubles to come, according to a report released Thursday. Children and teens with autism are often victims of bullying.

Game makes autism studies child's play
A new computer game developed by Edinburgh scientists is helping autistic children in the city overcome communication problems to improve their quality of life.

Autism Awareness Campaign in South Asia
Ivan and Charika Corea of the have appealed to the Heads of State of SAARC in South Asia to take urgent action to help and support the thousands of autistic people living in the region. They have made strong representations to the Prime Minister of India, Shri Atal Bihari Vajpayee and the President of Sri Lanka, Chandrika Bandaranaike Kumaratunga. There has been a huge increase numbers of people with Autism and Asperger's Syndrome in South Asia and the majority do not have public services in health, education, specialist speech therapy and respite care. See more information

Autism Awareness in North America
Metin Bereketli, the artist who generously donated one of his originals to Artism for Autism last weekend, will have his work displayed on "Friends" on NBC on Friday Sept 26, 2003. Look for the painting hanging up  in "Central Perk."  Click for it
You may also order his Reaching Out" poster donated to the event organized by The Autism Autoimmunity Project (TAAP). View the poster
The Autism Autoimmunity Project (TAAP) is a non profit charity dedicated to obtaining funding for independent research addressing immune and immunogenetic abnormalities in autism.  Please visit the TAAP website for more information or phone 1-800-939-TAAP.
 

SOME GOOD CANADIAN NEWS

Cooking club designed for people with autism
A love of cooking and her experience as a parent of an autistic child prompted Penny Gill of Dundas to establish a cooking club for people with the disorder.

Meet my brother
A FamilyNet story about Megan McCreary (10) who has two brothers on the autism spectrum, featured in a video produced for the Autism Society Ontario to promote Toonies for Autism Day. Megan is also a partner in the business called Common Senses, which designs Fidgitkitz, a collection of affordable sensory toys for children who have autism.

The Autism Collection of the Kitchener Public Library will be officially launched on Tuesday evening, October 21, from 7 pm. The collection is a special, regionally-accessible, resource of materials in all formats intended for the informational, instructional and research needs of the general public on this disorder. It has been made possible through the generous donation of the Waterloo Wellington Autism Services organization. People who live outside Kitchener can request a Limited Access Borrower’s card to use the Autism Collection, and materials may also be requested through Inter-Library Loan. Click for more details 

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

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

the next few days
September has been Autism Society Ontario's month to raise funds and awareness through the LCBO's program at the cash registers in their stores across Ontario. It would be most helpful if friends of the autism cause, when visiting your local LCBO, would:
1) check to see if our card is in the coin box at the register
2) if you feel comfortable, ask the manager why it's not there if it isn't and then let us know so we can send them another card.
3) if you do see it, reinforce the fact that it is there and if you're in a busy line, be sure to drop a few coins in to draw attention to it.
 

Kerry's Place Autism Services: Workshops in Central West Region
July-December 2003  Click for more information about all these events
Events are free and most will be held in the KPAS Resource Centre in Brampton, unless otherwise stated.
 

October 1, 7pm to 10pm in Mississauga
Autism Society Ontario: Peel Chapter's Annual Agency Panel on Services in Peel.
At the Peel Board of Education, 5560 Hurontario St.
For more info call 416-390-9193 or email peelaso@sympatico.ca
 

October 18, 2003, in Whitby, Region of Durham
Current Directions and Findings in Autism Research
Featuring Guest Speakers Dr Wendy Roberts and Dr Jeanette Holden
Where:  When:Saturday, October 18, 2003
Where: Durham District School Board Auditorium, 400 Taunton Road East, Whitby
Time: 9:00 a.m. -  3:30 p.m.
Cost*:  For ASO members**:  $10 Parent/Individual with ASD, $25 Professional
            For non-members:  $15 Parent/Individual with ASD, $30 Professional
* Includes lunch. **Annual tax-deductible membership of $30 (parent/individual) or $50 (professional) may be paid at the door.
Please note that registration for this workshop is BY MAIL ONLY and will be confirmed only upon receipt of payment. Click for registration form and more details.
 

Tuesday, October 21, 2003, 7-9 pm, in Kitchener
Official launch of New Autism Collection at Kitchener Public Library
The unique collection of books, videos and other information about Autism Spectrum Disorders, made possible by a generous grant from Waterloo Wellington Autism Services, is to be launched during Ontario Public Library week.  Click for more details 
 

October 21 until November 21, 2003, in Toronto
ARTIST ALERT: Abilities Festival: A Celebration of Disability Arts and Culture
Abilities Festival is offering as its inaugural event "Connections," a month-long visual art exhibition and sale. It will run at the Carrier Gallery, which is housed in the Columbus Centre, 901 Lawrence Avenue, at the corner of Dufferin Street in Toronto. The gallery is open to the public every day and all are invited. The Canadian Abilities Foundation, on behalf of Abilities Festival, invited artists with disabilities to submit their work for consideration to this juried exhibition and sale. For further information, please visit the  website or phone 966-0393.
 

Saturday, 25 October 2003, all day
Dufferin Chapter of ASO:
1st Annual Symposium on Autism
Click for full program and registration form 
 

October 25 to November 15
Planned Lifetime Networks: Autumn Workshop series
Four Saturdays mornings, in Kitchener
Planning a Good Life Now
Oct. 25: Planning financial security
Nov. 1: Planning a home of one's own
Nov. 8: Planning for after we’re gone
Nov.15: Planning with our disabled children (capacity assessment, powers of attorney, and supported decision-making.
Click on heading for more details or phone 519-746-1188 or email plnwwo@sympatico.ca
 

Saturday October 25th, 2003, in Toronto 
Annual Conference of Ontario Association for Families of Children with Communication Disorders 
Thanks to the generous support of the Hospital for Sick Children Foundation, this is the largest event OAFCCD has ever organized. Speakers include: 
-Carla Johnson, Associate Professor, Speech-Language Pathology, University of Toronto on the long term impacts of a communication disorder.
-Kathy Schaffer, Ministry of Education Special education Project, on Individual Education Plans
-Ginny Marx, SLP and Karen Rolston, Teacher with the Kindergarten Language Program at the Toronto Catholic District School Board on phonological awareness.
-Dr. Maria Kokai-Czapar, Psychologist, Deaf and Hard of hearing Program, Toronto Catholic District School Board  on the challenges of growing up with a communication disorder
Click for flyer and registration form
 

October 25 & 26 in Toronto
WORKSHOPS by Dr Patrick McGreevy, at University of Toronto, St. Michael's College
October 25: TEACHING APPROPRIATE SOCIAL BEHAVIOUR TO CHILDREN AND ADULTS WITH
AUTISM AND OTHER DEVELOPMENTAL DISABILITIES
October 26: INTENSIVE TRAINING IN VERBAL BEHAVIOUR - TEACHING LANGUAGE TO
CHILDREN AND ADULTS WITH AUTISM AND OTHER DEVELOPMENTAL DISABILITIES
Registration and Information: email Brookfield Programs at brookfield@sympatico.ca or telephone 416-999-3266.
Please send / leave a message and someone will get back to you as soon as possible.
 

November 8, 2003, in Guelph
2003 "Rock Star Gala" in Peter Clark Hall, University of Guelph, as an autism fundraiser.
Organized by Len Kahn in support of Autism Society of Ontario, Wellington County Chapter's summer programs and the new Stephanie Home, a local group home for autistic children.
 

December 10 - 13, 2003, in Chicago, Illinois
2003 Annual TASH Conference
The TASH Conference is the conference to attend to learn about the most progressive policy and practice issues affecting people with disabilities, their families, support providers, and advocates. Participants can choose from a menu of over 450 sessions showcasing the most progressive thinking, practices, and research in the areas of Young Adult and Adult Services and Supports, Inclusive Quality Education across the Lifespan, Ethics, Values and Rights, and more! 
Early bird rates are good through Sept. 30th. Click for details  To register

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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

Please also see the items under From the Front Lines (next section)

Comment on Ontario's announced BRIDGES program:
"I've read somewhere that the BRIDGES initiative is mostly social training for social skills that probably serve the political caregiver civil-servant more than anybody else.  My children want to become independent and self-sufficient in this respect!   That's what I want for them as well, what they want for themselves, with the understanding that comes from the truth.  Does that seem like what BRIDGES is about to you? Also, related to this issue,  I heard in a recent news blurb that Premier Ernie Eves suggested that the focus would be on what's best for the general public in education and not special interests in this respect.  Is that "new-speak" meaning that the emphasis is now off special-needs at this "election time"?  What are we to make of that? and of politics, in general?... Does the "amount" of the BRIDGES initiative even seem proportionate to the epidemic growth of autism reported from international sources?  Does it equal what we paid into it, or what society should invest into it for its own long-term best interests?  I think not... Where is the "true" concern, initiative, and understanding for autism and the disabled in this regard?  It seems more likely that we are being bought by "token" charity and something of a lie... with the BRIDGES program and politics generally... getting less than what we've worked hard and paid for and certainly much less than what we need and our children and future deserves." 
 

Individualized Funding poster
It doesn't cost more to have a better life. 
Make Individualized Funding an option in Ontario!
Share this poster produced by the Family Alliance of Ontario

Investing in People
A new essay by John Lord in the series, Periodic Updates from the Individualized Funding Coalition of Ontario. "Understanding Individualized Support: The Power of Independent Planning and Facilitation."

Announcing the SSAH Coalition’s new official website at www.ssahcoalition.ca
"Our activities and efforts focus to improve this vital program which serves 18,500  Ontario        families and individuals daily. This web site will act as a resource of information. It will provide the opportunity for families to share their stories, the good and the bad about SSAH. We hope to document the best practices and share new ideas with you about how to use SSAH more effectively."
Please also find possible questions that you can ask your candidates before the upcoming election next week on October  2, 2003. Please exercise your right to vote. It is important that our voices in support of the SSAH program be heard.

"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. Please contact Judith Snow. Phone: 416-538-9344 or Fax: 416-516-1691

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HELPFUL RESOURCES
Note: we hope to feature some more new books in the next bulletin

Toronto Chapter of Autism Society Ontario now has its own website.

IDIA: Inter-University Disability Issues Association is an association of disability service providers from Universities throughout Ontario. Working together, Universities can share ideas and strategies to overcome issues and problems, allowing disabled students across Ontario to succeed in post-secondary education.

Mark Heinmiller's website: Asperger's Syndrome: Positive or Negative?
Mark eagerly seeks employment in the area of Library Sciences, ideally in a university environment, having just qualified with his MLIS at the University of Western Ontario. If you have any suggestions, please let OAARSN know and we'll pass your message along. 

Visit Donna Williams' website

Lindsay Moir (Education Consultant) writes a weekly Q & A column at Family Net on special education issues. View this week's column  View previous columns

Children with Special Needs
is a new website created over the summer by the Ontario Ministry of Community, Family and Children's Services.

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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.

Cucek family fights for program for son James (18) in BC 
"James Cucek plays piano beautifully although he has never had lessons....but is not playing as much as he used to because of the pain he suffers while taking various prescription medications. Sometimes he has to be hospitalized to be stabilized on medications. [His parents] watch helplessly as James crawls along the hospital corridors." 

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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