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

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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. Nor do we necessarily agree with opinions that may be expressed.


22 November 2004

Sarnia Workshop on Individualized Funding

Presented by Barb Leavitt and Charlotte Dingwall of St Marys Association for Community Living, and reported by Brian Henson of

A Community that Cares:
Creating Affordable Housing through
Leadership, Innovation and Collaboration.
Report of a workshop by Gerald Bloomfield



Early Intensive Intervention for Children with Autism

Supreme Court judgment released
Ruling in the case of Auton (Guardian ad litem of) v. British Columbia (Attorney General), the Supreme Court of Canada refused to elevate health funding to a constitutional right in a ruling that was a stunning setback for families of autistic children who were asking the state to pay for expensive treatment. The unanimous and unequivocal decision overturned two British Columbia court rulings that found the provincial government violated the Charter of Rights equality guarantees for the disabled. Yesterday's decision may have an impact across Canada, hindering lawsuits in which parents in several provinces are seeking court orders forcing governments to pay for early intervention therapy that costs up to $60,000 per year per child. The case was considered one of the most significant social policy issues to reach the high court in years. All 10 provinces and Ottawa intervened to warn the judges that governments would need unlimited budgets if health care were to become all things to all people. National Post story   Globe and Mail story   Reuters story  CTV News story

Ontario parents to challenge autism program

Christie and Grant Hartley are leading the class-action lawsuit in behalf of an estimated 1,200 families whose children would have qualified for Ontario-funded EIBI except that they turned 6 before getting off waiting lists.

Give autistic children the therapy they need
Editorial comment in The Globe and Mail, Tuesday, November 16, 2004:
"There is a need to find the most effective way to treat autism at the lowest cost. Because it makes long-term economic sense, because the public health and education systems are premised on equality, and because a country that ignores its most vulnerable citizens should be ashamed of itself, it's time Ontario, and the rest of Canada, got on properly with the job."

Nova Scotia will back autism program
Families excited about news of $4-million plan for treatment.

Weaknesses in Care of Adults with Autism

Ontario Government Launches Review Into Deceased Resident’s Disappearance From Oaklands

Transforming Developmental Services
A Preliminary Discussion Paper was released in late October by the "Joint Developmental Services Sector Partnership Table." Read the Discussion Paper   Link to associated information on the MCSS website
Questions are posed, to which we are all invited to respond, initially during November:
  • What should be the roles and responsibilities of different parts of society in supporting individuals who have a developmental disability?
  • What strategies and resources would help individuals receive seamless supports throughout their lives, including points of transition?
  • What supports and services that are currently available work well should be built on for the future?
  • How should a reasonable level of government funding for an individual be determined?
  • Services are changing in Ontario for people who have a developmental disability. What would you like to see happen?
  • What do you think are the priorities the government should address?
Your ideas of responses to these questions are welcomed. If you like, you could share your thoughts about the paper's relevance to people with autism with OAARSN.


Autism linked to overactive immune system, study finds
Researchers (at Johns Hopkins University School of Medicine) studying the brains of people with autism say they have found strong evidence that parts of the immune system were overactive, causing chronic inflammation. This inflammation appears to cause damage to the brain in a manner similar to what is seen in other neurodegenerative conditions such as Alzheimer's disease, Parkinson's and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The new research suggests strongly that immune system problems begin in the womb -- likely in the second trimester when the nervous system is developing -- and continue throughout life. The study, published in today's edition of the Annals of Neurology, was conducted using the brain tissue of 11 people with autism, aged 5 to 44, who died from accidents or injuries. The victims' brains were donated to a large U.S. autism tissue program that promotes research. What is not clear is what is triggering the immune system to become overactive during fetal development. The cause could be genetic, environmental, or a combination of the two. Read another story  (one of many on this news).

SafeMinds' Report Shows CDC Ignored Autism-Mercury Data
SafeMinds -- America's leading scientific organization investigating the links between mercury and autism -- has released a report showing that government analysts were aware of a potential vaccine-autism link as early as 1999, but hid that information from the public and Congressional inquiry.

Life through a kaleidoscope
Massachusetts mother turns experience with autistic son into cable TV program.



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
 URL Link for more information/registration 

 Please Do Not Send Files Or Brochure Attachments

For more details or for other previously announced events, opportunities and projects that are still current,
please click on this calendar list

Tuesday, November 23: 7pm.
Thelma Wheatley, My Sad is All Gone.  A Family's Triumph over Violent Autism.
Lucky Press. Fall 2004, 284 pgs. $18 US. ISBN 0-9760576-0-3.
Port Credit Library. Call library: 905-615-4835. 
www. luckypress.com/wheatley
Available also in Parent Books bookstore, Toronto.  416-537-8334. 
A powerful compassionate book, offering searing insight into the education of autistic children and into the world of psychiatry.  It is endorsed by Temple Grandin, autistic icon, and author of Thinking In Pictures, who writes: "My Sad is All Gone is essential reading for anybody who needs to learn about pharmacological treatments for severe rage in teenagers and adults with autism."

Wednesday, November 24, 2004
, 7–9pm, in Orangeville

Occupational Therapy: A Practical Approach
Debbie Rodrigues, an Occupational Therapist, will discuss sensory/motor strategies, the “sensory diet” and modifying the environment to reduce unwanted behaviours.
KPAS Dufferin Centre, 29 Centennial Rd. Unit #4
Please RSVP by November 15, 2004 to Lynn Walbourne 519-941-7038 Ext. 11
*Limited space available – Register early*
Childcare is available at the A.S.O Dufferin Centre at a cost of $2.00 per child
Please call
Lynn by November 15 to reserve a spot.

November 24-26, 2004, in Ottawa
National Summit on Inclusive Education
Hosted by Canadian Association for Community Living
Crowne Plaza Hotel, Ottawa, ON
Conference brochure
Information schedule
To register Click Here

November 26, in Montreal
Autism and Enterocolitis: a conference for professionals only

November 26, in London

Suicide Recognition and Response
Workshop by J. Arthur Sheil

November 30, in Ottawa
The Ties that Bind
The National Film Board of Canada invites you to the Ottawa
premiere of a film about 28-year-old Chris Jordan, who lives
with multiple disabilities, and his transition toward a more
independent life. Showing at 7:00 p.m. at the National Gallery
of Canada Theatre on Sussex Drive.

RSVP by November 24 to 613-947-2306 or click on title.
There will be a public reception following the screening.
For those who are unable to attend the film screening,
the CBC will be airing a TV version on Thursday December 2nd
on the News World Channel at 10:00 p.m.
Click for more details
Message from Kathleen Jordan, mother of Chris:

I hope you can join the Bill Jordan family - Bill, Christopher, Geoff, Meredith, Suzanne and me Kathleen, for this important
screening of the NFB/CBC film "The Ties That Bind". The documentary film which was recorded over a period of 3 years from 2001 to 2004, depicts the challenges of the Jordan family with their adult son with disabilities, Christopher, as he prepares for an interdependent life in his community.
With the help of a personal support network created by the family and a local charity, Lifetime Networks Ottawa (LNO), the family prepares for a safe and secure future for their son. Bill and I were instrumental in starting this organization in Ottawa and it is modeled after an organization in B.C. called PLAN. A more detailed explanation of both organizations can
be found at the following websites:www.plan.ca and www.lifetimenetworks.ca;
At the most recent web site created by NFB and hosted by Geoff Jordan www.nfb.ca/tiesthatbind, NFB hopes to inspire you through the stories on the site and provide information for you to learn more. This fully accessible site begins by telling the Jordan story (most if not all of these stories are not repeated in the documentary) but it is hoped that you will participate by visiting the site, sharing your opinions and/or stories, and eventually becoming part of someone's network in your community or neighbourhood.
This film makes a memorable contribution to social policy issues of growing relevance in Ontario and Canada. Although the screening of the film will be followed by a Q.& A. with the family, there might also be an opportunity to pose questions to the politicians - federal and provincial directly involved in these issues. It is absolutely essential that the most vulnerable members of our society can achieve a level of interdependence and dignity while becoming valuable contributors in their communities. We are optimistic that together we can figure out how this can work rather than focusing on why it can't. I invite you to participate!
We are hopeful that Minister Dryden, MOP Sandra Pocatello, Minister Ian no
and Premier Dalton McGivney might be able to assist with this presentation. All have been invited to participate including Her Excellency, Adrianne Clarkson and our national patron, His Excellency John Ralston Saul.

Thursday, December 2, 2004, 9am-4:30pm, in Toronto
An Exploration of Some Higher Order Issues of
Restraint as a Human Service Technique

Location:  Room SHE560, 5th Floor, Sally Horsfall Eaton Building,
Ryerson University
Recently, the press, some advocacy groups, and professional organizations have been raising questions concerning the use of restraints in human services.  This workshop provides a forum for concerned individuals, especially service workers, to explore some of these troubling moral questions raised by the use of restraints in human services, especially within the context of the vulnerability of people who receive services.  This is not a how-to-workshop, but rather an opportunity for reflection and learning. Click for information and to register

December 3-4, 2004, in Windsor
Autism Awareness Centre Presents
Jan Casali, Consultant to the Geneva Centre
Developing Communication Skills For Verbal and Non-Verbal Individuals with ASD
Susan Aud Sonders, M.Ed, Author of Giggle Time
Giggle Time: Establishing the Social Connection
Hilton Windsor, 277 Riverside Dr. West, Windsor, Ontario
For more information and registration form
Please contact Wendy Benson at toll free 1-866-724-2224 or wendy.casdc@shaw.ca
or Vicki Harris at toll free 1-866-488-9497. Fax: (780) 477-8350 or (780)447-5445.
Website information at

December 3 & 4, 2004, in
Seattle, Washington

Innovative Interventions in Autism/NVLD & Asperger’s Syndrome
– Practical Therapy for Home & School

*Margaret Bauman, MD – Pediatric Neurology – Harvard University Medical Center
*Rosemary White, OTR/L – Occupational Therapy – Private Practice – Seattle, WA
*Martha Burns, PhD – Speech Pathology – Northwestern University
*Jerry Newport – Author – Adult with Asperger’s
Additional Information:  Linda S. Neilson Ph.D, Continuing Education Program of America, cepa@dpc.net

.....advance announcements....
April 8-10, 2005, in Cornwall

Symposium on Raising an Adolescent/
Young Adult with an Autism Spectrum Disorder
Hosted by Autism Society Ontario's Upper Canada Chapter
Click for program
Sample of presentations:
-Secondary School Transitions for Students with Asperger’s Syndrome (Richard Hales)
-Planning for Transition to Employment, Community & Post Secondary Education (Lindsay Moir)
-Panel Discussion On Educational Issues - Please come prepared to ask YOUR questions
-ASD Students in High School - Visual Supports for Meaningful Learning  (Sheila Bell)
-Sexuality and People with Developmental Disabilities (David Hingsburger)
Registration must be received ON or BEFORE MARCH 25, 2005.
Early Bird Registration before January 21.
For brochure with all the details about the seminars, accomodations, costs and directions.
contact the Upper Canada Chapter for a brochure dkeillar@sympatico.ca

Friday, April 29, 2005 in Guelph
Click for planning updates and conference program
See more below under Issues and Advocacy



Mental Health and High School
There is a section for students, one for teachers, and one for parents.

Demystifying Autism From the Inside Out - Official William Stillman Website
Bill Stillman invites friends, individuals on the autism spectrum, and their families, caregivers, educators, professionals and associates to visit his new website. Bill is the author of Demystifying the Autistic Experience: A Humanistic Introduction for Parents, Caregivers and Educators, which has been highly praised by the autism and self-advocacy communities. His forthcoming book, The Everything Parent’s Guide to Children with Asperger’s Syndrome: Help, Hope and Guidance, will be published in 2005.
Bill's third book on the subject will be Autism and the God Connection: Divine Experiences of Exquisitely Sensitive Beings. He writes:
"Every one of us is a spiritual being, and perhaps no one knows this better than parents of children with autism. So many individuals with autism seem to "vibrate" at a frequency different from others because they are inherently gentle and exquisitely sensitive. They may more readily perceive all things seen…and unseen. This may come through in a divine manner that is natural not supernatural.
"Does your child:
• Have a deep appreciation for the beauty of nature, forests, lakes, streams and plant-life
• Have an innate spiritual or religious sense that compels others in positive ways
• Have an unspoken connection with dogs, cats, horses, butterflies and other creatures
• Hold conversations that appear to be "two-way" with someone unseen, usually at the same place and time every day
• Have the ability to forecast what’s going to happen next or know what someone is thinking before it’s said, especially with loved ones
• Talk about, writes about or draws angels or deceased grandparents (or is able to identify them---without prompting---from photographs, even if the grandparent passed before the child’s birth)
If any of these areas (or others not mentioned) pertains to your child, and you are willing to share your stories using a pseudonym or first name only, please contact Bill at Billstillman2@aol.com

NLD Networking Group of
based in Kitchener-Waterloo,
meets the first Wednesday of the month from 7-9 p.m.
We have a variety of speakers addressing the unique issues surrounding NLD.
Our meetings are a safe, supportive forum in which to meet other NLD parents
who understand the joys and challenges of
living with this learning difference.
People who live outside our area can be part of our e-mail contact list.
They will receive information about resources, books, websites, conferences, workshops etc.
We are an active, committed group of parents seeking to raise public awareness about NLD,
facilitate better understanding of this relatively new
and provide current information and resources to interested individuals.
We are also working towards educating the educators by facilitating presentations,
workshops and in-service opportunities for teachers and clinicians.
For more information contact info@NLDontario.org
or visit our website at www.NLDontario.org

Announcing the WW-ASD Bio-Interventions Support Group

A new group discussion site that gives support to people interested in, or already using, biological and alternative interventions that have been found helpful for people with Autism Spectrum Disorder.
It is a forum for the exchange of information, such as the latest developments in autism treatments, and also where services, supports and supplies can be found. It is also a place where local networks (such as food co-ops, car pools, joint ordering, etc.) can post their schedules in order to create awareness, and to facilitate people with ASD and their families in implementing and affording the help they are pursuing.
This site recognizes and respects people's right to information and choice.

Members have been suggesting websites they have found most useful in their quest for helpful information. This is the present list. Any further suggestions?

http://www.autism.com/ari/specialinterest/form34q.html (Autism Research Institute's parent
ratings of behavioural effects of biomedical interventions)



http://www.fabresearch.org (Re: nutrition and behaviour)

(Archives of Schafer Report --lots of bio-info here)

http://www.edelsoncenter.com/autism.htm (general autism & bio-info)

http://home.san.rr.com/autismnet/research.html (physicians re autism, and diet and autism)


http://www.autismndi.com/  ANDI: Autism Network for Dietary Intervention which also includes new sections
The Specific Carbohydrate Diet™ (SCD™)
The Body Ecology Diet (BED)


On behalf of adults and their families in our Waterloo-Wellington region, ASPIRE seeks information about health practitioners who are willing to treat adults with autism and already familiar with ASD.
ASPIRE welcomes critiques on costs, usefulness of results, and quality of service.
1. Please include location and contact information, and any details of tests, and treatment practices and modalities.
2. We are interested in local, provincial and international professionals that families in the Waterloo-Wellington region have used.
3. Ratings and/or comments by families and persons with ASD on familiarity with, commitment to gaining a familiarity with, willingness to treat, availability of support staff to help people with ASD, will be valuable.
4. If you are responding as a healthcare professional, please provide links to personal reports or email addresses for persons, families or caregivers willing to discuss their experiences.
Practitioners may include:
Alternative Health Providers
                        Massage Therapists
                        Reiki, Reflexology, Therapeutic Touch
                        Cranio-Sacral Therapists
Medical Doctors
                        Environmental MDS
Augmentative Health Professionals:
                        Speech Language Therapists
                        Occupational Therapists
Laboratories for taking samples for OHIP-covered and Non-OHIP-covered tests. 

Please email your information to aspire_advocate@yahoo.ca

ASPIRE provides information to persons who live with ASD, their families and caregivers, in order to support their search for resources and their right to choose among them. Unless specifically indicated, we do not endorse any specific treatment, program, product or service.


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

Transforming Services in Ontario
for People with a Developmental Disability

In May 2004, the Ontario Budget announced that the Government "will be transforming services for people who have a developmental disability in order to create an accessible, fair and sustainable system of community-based supports." A Preliminary Discussion Paper was released in late October by the "Joint Developmental Services Sector Partnership Table." Read the Discussion Paper   Link to associated information on the MCSS website

Responses during November 2004 are invited, especially from groups of people and families concerned with disabilities. It is said that "this very important process will profoundly affect developmental services for many years to come." The paper will be "the basis for broad public consultations to be completed by Feb/March 2005." The committee and paper will "define the all-important terms of reference for the broader provincial consultations." So this is a unique opportunity....

The Discussion Paper's purpose is to raise questions to help people share ideas and make suggestions. "Feedback will help the Ministry to prepare a draft plan to transform services in Ontario, as the basis for a broad public consultation. It is noted that "the ideas in this document are presented for the purposes of discussion only and do not represent proposed directions or policy on the part of MCSS."

Members of OAARSN List and disability advocates generally will be pleased by the tone of the discussion paper, with its references to inclusion, removing barriers, building on community, self-determination and choices, individualized funding, and possible alternatives to traditional services.

Questions are posed, to which we are all invited to respond, initially during November 2004:

  • What should be the roles and responsibilities of different parts of society in supporting individuals who have a developmental disability?
  • What strategies and resources would help individuals receive seamless supports throughout their lives, including points of transition?
  • What supports and services that are currently available work well should be built on for the future?
  • How should a reasonable level of government funding for an individual be determined?
  • Services are changing in Ontario for people who have a developmental disability. What would you like to see happen?
  • What do you think are the priorities the government should address?

What can we all do?

1. Read and think about the discussion paper, in your personal and family situation. Consider the points made in a recent presentation by John Lord who has been so active in the cause of self-determination and individualized funding in recent years. John's presentation "highlights some of the key factors that must go into transformation" and is based on "experience in several jurisdictions as well as on an emerging research literature." He notes that the MCSS consultation paper hints at key elements of transformation, such as Individualized Funding, the funding of Innovation, and the need for Independent Planning supports. But the Ministry needs many more ideas about how to implement such key factors. So we must spell them out in our reactions to their paper. Click to read Citizenship Based Policy Reform

2. Discuss the paper with others who have similar concerns, with a view to presenting a combined submission. That's the kind of response that is wanted this time. OAARSN will co-ordinate responses from persons and families who live with Autism. Do the principles and questions of the Discussion Paper speak to your situation? How can the vision be implemented so that each person with Autism has a good life? If you'd like to air your thoughts, please send comments and questions to ebloomfi@uoguelph.ca

3. Think about taking part in the conference CREATIVE SUPPORT FOR VULNERABLE ADULTS which Guelph Services for the Autistic is organizing next April 29, 2005. We think this event is timely and relevant. See more below.


Guelph conference on
Friday, April 29, 2005 in Guelph

Guelph Services for the Autistic and OAARSN are taking the lead in convening a gathering of Ontario people who want and need to be creative in supporting good lives with and for adults who are vulnerable because of disability. We particularly want to encourage self-advocates, families and friends to take part.
  • Our concern is practical--how to plan and implement the elements of a good life for each person and that we can learn from each other's effective strategies and success stories.
  • Our approach is comprehensive and holistic. We hope to put our minds and imaginations around various strategies, to show the connections among them, and to help persons and families think about and choose combinations that may work for them.
  • We plan a process of collaboration in discussion and sharing resources--during the conference and also beforehand and afterwards, using the OAARSN website and other media. Highlights of keynote, workshops and poster presentations will be recorded and edited into electronic and video resources to share with people and groups who cannot attend.  Click for planning updates and conference program
We welcome the following forms of collaboration with other groups:
a) Ideas of good strategies and models that should be included and represented and of needs that could be addressed by this conference. Questions and comments....

b) Display materials illustrating creative strategies and success stories developed by your group or known to you, for the poster presentations and shorter sessions in the afternoon.
These are some examples we know ourselves, but we want to include more:
-ways of "deep listening" to vulnerable persons who do not speak
-helping self-advocates to direct their own supports
-creating and maintaining circles of support to supplement and succeed living parents
-circles of support for vulnerable persons who have no family
-creative options to have a home of one's own
-independence technologies
-recruiting volunteers to be informal friends
-ways to screen, train and appreciate excellent volunteers
-bridging gaps between adults with special needs and their neighbourhoods and communities
-supporting adults who want to continue learning, formally and informally
-enabling people to develop micro-enterprises
-lifesharing communities in households or larger units
-planning good lives now, to be effective through future transitions when parents can no longer support vulnerable adults

-how brokerage works
-what aroha/microboards can do

c) Someone to be the liaison person for your organization or support group, who will pass on news and updates to your members.



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.

              Feelings of Destiny
                I feel there is a way to feel, where feeling is not stinted,
                Where soul can meet the rationale and no recourse is hinted.
                The feeling is not bound by fate, nor by reaction feared,
                But by the soul's own inner strength where spirit is endeared.
                I feel that I am but alive, the form is what I sense,
                In trying to decipher all; it makes me very tense.
                This tension is exemplified in sounds and sights and smells,
                And all I can but sense is glare and stench and gruesome yells...
                As I but dare explode inside to cut this tension down,
                The teasing does increase, ad hoc, as though I was a clown.
                But this just drives me further 'way from those who might make me
                Feel like I was a puppet case, without diversity.
                So oft I go, and hide in fear, a recluse 'gainst the crowd,
                Where I shun lights and noise and such, yet I am very proud
                Of being who I am, a self with choices for the soul,
                And all I crave is but respect; acceptance is my goal.
                However, others deem me “weird”, and say I need a “cure”,
                For I do not behave as “norm”, (but honest? Oh, for sure!).
                They call in therapists and pros to “treat” me for this “rage”,
                When I but just defend myself the best I can, for age.
                Why sure, I yell, and cry, and scream, for others do demand
                That I must follow their own ways; from rope to string to strand.
                I cannot deviate from this; it is a rule, per se;
                And I must look right in the eye of those who say “Obey!”
                But this just makes me more withdrawn, as I seek solace, too,
                Far way from any rule of thumb, away from any crew.
                And so I wander, by the cliffs, and gaze upon the sky,
                With all the moonlight and the stars; 'tis like a lullaby...
                To be away from force, restraint, and all the “rules” and “norms”;
                But when I'm dragged back to the crowd, beware of all the storms!
                I'll show that I will not be bent to others' wills or ways,
                By storming out, and showing them I count my life in days;
                And each day I must satisfy my own will, as I show
                That I but can decide my fate no matter where I go....
                             -Brian Henson ©2004

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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