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
6 October 2003

NEW CONTENT ON OAARSN'S WEBSITE 

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
September 26, 2003

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AUTISM IN THE NEWS

The plight of Danny
Best-selling novelist Nick Hornby has launched a powerful attack on the British Government for not spending enough money on the care of tens of thousands of autistic children. He spoke movingly about the condition of his son Danny (10) and described how parents face a daily battle against grinding bureaucracy, under-funded services and the seeming indifference of the authorities. To a packed meeting at the British Labour Party's annual conference in Bournemouth he said: "One of the first of many shocks one receives as the parent of a disabled child is that there is no one to help you negotiate the dense and dark forest of difficulties that has suddenly sprung up in front of you. Only a few parents are able to do this and even this fortunate minority go through hell and back to fight for what their children need and what they are legally entitled to." He particularly stressed the need for co-ordinating any services and supports, and that this depends overwhelmingly on mothers. 

Tom is 19 and severely autistic, with a baby's mind. His best hope is the battle his father is waging for his future
"A City of London banker shares his own story. Every day of his life, he faces one of the most difficult challenges imaginable: bringing up an inaccessible child who needs him, and who will always need him, like an infant. You might think that the Government would be falling over itself to help such obviously needy cases, to make it easier for brave parents... . Not a bit of it." 

We must do more to help parents cope with autism
A story in The Scotsman about 13 years of life with a daughter who has Asperger's. It begins: 
"No sleeping! No sleeping! Every time I started to drift off, the hand would snatch out and peel my eyelids back. And the questioning. The interminable questioning. And the screaming. The interminable screaming. ..."

Childhood sleep disorders can leave entire family exhausted

Autism in Kenya
World Community Autism Program Appeal to begin to meet the needs of an estimated 10,000 children.

From Bangalore to Hollywood
Julia Roberts to produce the amazing story of the Indian boy of 13, Rajarshi ‘Tito’ Mukhopadhyay, who is telling others what it feels like to be trapped in an autistic body and mind.

Boy brushed by genius
Famous since childhood as the 'autistic savant' with an amazing ability to draw intricate buildings from memory, now Stephen Wiltshire  (30) has risen to new artistic heights.

Homes to be built for people with autism
A project in Ellesmere Port, England, consisting of a total of eight houses and bungalows, providing accommodation for 18 people. It is novel in combining a status for the residents as tenants rather than patients with the provision of professional, specialist care and support.

A Place for Kids Like Them
A good story of a Sibling Support Project in Florida.

Equus heals provides therapy beyond words
A lovely story about how horses are used to provide physical and mental therapy for children with disabilities including autism. 

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

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

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
 

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.
 

THURSDAY, OCTOBER 9 AT OFCP, 1630 LAWRENCE AVE, TORONTO, 10 AM TO 1:30 PM
**AD HOC GATHERING of people interested in influencing the new government about disability supports in Ontario**
Meeting sponsored by the Individualized Funding Coalition for Ontario:
Some questions that will be explored include:
1. What kind of framework and set of values will the major players likely agree on?
2. How do we see individualized funding and related supports fitting with the more traditional service system?
3. What would make sense to ask for from a new government to insure that individualized support and funding can be significantly expanded?
4.  What strategies do we want to pursue? who should do them?
Please RSVP to barbara@acl.on.ca
 

October 9, 7:30 pm, in Waterloo
Waterloo Chapter of ASO meeting, with guest speaker Karen Klee on 
**Sexuality and Adolescents with Developmental Needs**
No charge. 115 University Ave E. (KW Habilitation)
 

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.
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.
 

Friday, October 24, 2003, in Toronto at Edwards Gardens
**Celebrate the 30th anniversary of Autism Society Ontario**
"It will be a marvelous evening of good food, entertainment and silent auction items - all in support of families living with children with ASD." 
Tickets can be ordered or reserved by contacting the ASO office  416-246-9592. Seating is limited, so make your reservation as soon as possible.
 

October 24-26, 2003 in Atlantic City, NJ
**Fatty Acid BioMedical Symposium with Dr. Patricia Kane
THE Conference on Fatty Acids, the Brain and Evidence Based Nutrition**
Join us for a 3-day odyssey into fatty acid metabolism, brain architecture, detoxification, neurochemistry, the cell membrane and beyond…
Learn how to safely and efficiently stabilize your patients with a new clinically proven method of both Oral and IV Lipid Therapy  More information To Register: Call 888.320.8338 or 856.825.8338 or visit www.Detoxxbook.com  or www.BodyBio.com
 

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! 
Click for details  To register
 

February 20 to 22, 2004 at the Inn on the Park in Toronto
**"Expanding Individualized Funding: The Time is Now!"**
The goals of this "workfest" weekend 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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ANNOUNCEMENTS OF SPECIAL PROJECTS AND RESEARCH 
 

Sharing the Voices of FC Users: 
Update on the Idea of a Workshop in Ontario

Yes, persons with autism do still use Facilitated Communicating to express themselves with insight and eloquence--even in Ontario! For some it is the only reliable way they have of making their real needs and wishes understood.

Chris Pentzell of Los Angeles, whose extraordinary brother Nick has been an FC user and poet for more than a decade, has a vision of sharing the voices of other FC users, by publishing a book of poetry, short stories and artwork created strictly by FC users. She’d like all profits from the book to go to an organization that furthers FC use, and strongly believes that FC users should be involved in the entire process, not just in the creative aspect. She wants to make sure the FC users communicate what they want to say rather than it being about what others think should be communicated. Click for more background

Chris wonders if an FC workshop might be organized in Ontario, as part of a series of "low-maintenance learning tools" in other regions of North America.  She writes: "One workshop is nearly all set up here in Whittier, CA.  I've been working with WAPADH (Steve Boyer, Darlene Hanson, Janine Guncic). They're providing the space and some money to have the workshop professionally videotaped (for possible future documentary purposes). We've got a professional writer leading the workshop -- Professor Tony Barnstone of Whittier College.  As of now, 7 participants are confirmed.  The Autism Society is providing lunch for us. I don't know exactly how it's all going to look, but I'm sure it will be fun and a definite learning experience for the future. Elin Doval in Richmond, VA has taken on coordinating a workshop there, but no date has been set. My brother, Nick Pentzell, and my stepmother, Gwen Waltz, are looking into having the Lonesome Doves create a workshop in Philadelphia. Meanwhile, my brother Max is looking into resources in the San Francisco Bay area."

Whom do you know in Ontario who uses FC to communicate? Perhaps FC is the only or most reliable way s/he can express himself/herself? Are you interested in supporting such a workshop? Can you suggest any practical help, such as somewhere to meet, and some funds to pay for facilitation? Please let OAARSN know. You may email Chris Pentzell at CPentzell@aol.com or phone her at (310) 202-7866
 

The Ontario Mental Health Foundation is pleased to announce that Autism Society Ontario will again be offering a studentship in 2004. The Foundation will administer the studentship on behalf of Autism Society Ontario. The regular Guidelines of the  Foundation will apply to this award, with the  following exceptions: 
The award will be restricted to applicants who can show that their work is in the field of autism. 
The award will be for $20,000.00 per annum. Funds are sufficient to make one award in 2004. 
The application deadline is: Friday, November 7, 2003.
Click for application forms etc
 

Thirteen Research Abstracts as examples of current topics and findings:
   * Indolyl-3-acryloylglycine (IAG) Is A Putative Diagnostic Urinary Marker For Autism Spectrum Disorders
   * Constipation with Acquired Megarectum In Children With Autism
   * Early Intervention And Brain Plasticity In Autism
   * Can Early Interventions Alter The Course of Autism?
   * Why Have Drug Treatments Been So Disappointing?
   * Autism and Specific Language Impairment: Categorical Distinction or Continuum?
   * Cognition In Autism: One Deficit or Many?
   * The Amygdala, Autism And Anxiety
   * What Do Imaging Studies Tell Us About The Neural Basis Of Autism?
   * Microbiology And Immunology Of Autism Spectrum Disorders
   * The Neuropathology of Autism Spectrum Disorders: What Have We Learned?
   * X-linked Genes And The Neural Basis Of Social Cognition
   * How Might Genetic Mechanisms Operate In Autism?
   * Evidence of MMR Risk Is 'Compelling'
Abstracts are posted in SCHAFER AUTISM REPORT for Monday, October 6, 2003, SECOND SECTION, Vol. 7  No. 202.1  Find in SAR Archive 

Two abstracts of articles in the Journal of Autism and Developmental Disorders (October 2003)
"Peer Interaction and Loneliness in High-Functioning Children with Autism"
"The Friendship Questionnaire: An Investigation of Adults with Asperger Syndrome or High-Functioning Autism, and Normal Sex Differences." 

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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

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HELPFUL RESOURCES

TAAP : The Autism Autoimmunity Project's goals are to:
1) fully define immune etiologies in autism;
2) develop appropriate treatment options for individuals who have autism through autoimmunity or immune system deficiency; 
3) develop mechanisms for prevention of immune-based autism.
 

Read the new article Reflections on Friendship by David and Faye Wetherow.
"What steps can we take to invite and support real friendships for our sons and daughters who live with disabilities?  We sometimes see other children moving along in a sea of friendship, and we see our children struggling with isolation.  The natural ebb and flow of play, enjoyment
and affection may seem out of reach, and we worry about the possibility of a life-long pattern of separateness.  What can we do?....."
This article was first published on the Apraxia-Kids website

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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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