ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

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OAARSN NEWS BULLETIN
 
1 July 2005


NEW CONTENT ON OAARSN WEBSITE


ADULT AUTISM ISSUES IN WATERLOO-WELLINGTON, 31, June 2005
Includes, in PDF format:
-Information about Gentle Teaching and the July 6 workshop in Guelph.
-Update on ACES
:
towards an intentional community and centre of excellence for/with adults who live on the autism spectrum
-Note on resources and initatives coming out of the Guelph spring conference, Creative Supports for Vulnerable Adults
 

ONTARIO NEWS

$5-million autism research institute unveiled
York University in Toronto is taking the lead in helping children with autism to be more creative and communicate better. One technique, called DIR or "floor time," uses warm, back-and-forth interactions to promote all aspects of a child's development, said Prof. Stuart Shanker. Shanker is working with Dr. Stanley Greenspan, a child psychologist in the U.S. who pioneered the technique of using simple questions, big smiles and a lot of energy, when interacting with students. "If you really want to work with a child, you have to get on to the child's wavelength," said Shanker. "To do that, you have to be a little quiet and let the child tell you, and they will tell you."  Milton and Ethel Harris donated $5 million to establish the research and clinical institute at York, the largest private donation in the university's history.


Ministry of Community and Social Services Announces Plans For Oaklands Regional Centre
Oaklands Regional Centre is about to undergo a transformation that will give it a new mandate and focus in
providing community-based care for people with a developmental disability and other complex medical, psychiatric or behavioural challenges, Minister of Community and Social Services Sandra Pupatello announced today. "We have all learned some lessons from the recent events at Oaklands - lessons that can't change the past but can benefit everyone involved with caring for people with a developmental disability now and into the future," said Pupatello. "It is time for Oaklands to become a part of our transformation of developmental services. It is time for a new Oaklands with a new focus."

As part of the transformation plan, Oaklands will have:
- A new mandate: Oaklands will move from focusing on residential services to become a clinical resource centre specializing in care, respite and mobile outreach services for people who have a developmental disability and complex care needs.
- New leadership: James Duncan will assume the position of executive
director in September 2005, bringing 26 years of experience in the fields of developmental services and mental health. Dr. Robert King, a
respected expert in the treatment of developmental disabilities and complex mental health issues, will provide leadership to clinical services.
- A new community focus: Oaklands will expand the membership of its board of directors to include a greater diversity of community expertise. The board will give Oaklands a new name to reflect its commitment to a new mandate.

There is no word in the news release or backgrounder about what will happen to the present 70 residents, a significant number of whom may have autism.


Grieving mom wants answers:
son was abused in group home, then he died a painful death

Story by Michele Mandel in Toronto Sun, June 26, 2005.
”Everyone assured Nympha Dudley that group homes were the best place for her special needs adult son. But they were wrong. He would be abused for months by a worker at his first placement and would die two weeks after his transfer to a new one. David Dudley, just 26, died May 1 after he was finally taken from his group home to hospital for treatment of an incarcerated hernia and severe dehydration.” Not available online


Ontario Government Exploring New Technologies To Protect People At Risk Of Wandering
The Minister of Community and Social Services announces a project to help the government and community agencies to:
  • Better understand how locating technology can be used to improve the safety and security of individuals with autism, developmental disabilities, Alzheimer's and other conditions that may increase the risk of wandering
  • Give families and caregivers an opportunity to test the usefulness of new technologies in protecting the people in their care
  • Determine which technologies are the most effective in a variety of situations – family and group homes, rural and urban settings.
The government is calling on technology developers to submit Expressions of Interest by August 2, 2005 to participate in the project. After an initial review, applicants will submit a detailed proposal that outlines their proposed approach to working with community organizations to test the various technologies. Participation in the project would be voluntary for individuals and families.

Accessibility for Ontarians with Disabilities Act
On June 13, the landmark Accessibility for Ontarians with Disabilities Act received Royal assent. The new law will require government to work with the disability community and the private
and public sectors to develop standards to be achieved in stages of five years or less, leading to an accessible Ontario in 20 years. Standards will be set in both the public and private sectors to address the full range of disabilities, including physical, sensory, mental health, developmental and learning. For information The government is also seeking a chair and vice-chair for the new Accessibility Standards Advisory Council. Visit for more details

Physiotherapy Home Visits Now Covered by OHIP
The Ontario government has made changes to OHIP coverage for physiotherapy services to improve access. As of April 1, 2005, seniors living at home and patients coming out of the hospital may now be eligible to receive government-funded physiotherapy services at home. Those eligible include seniors over 65; residents of long-term care homes at any age; people who need physiotherapy services in their home or after hospitalization at
any age; and people enrolled in the Ontario Disability Support Program, Family Benefits and Ontario Works. Call 1-800-268-1154 (TTY: 1-800-387-5559).

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GENERAL AUTISM NEWS

Paradigm Shift In Autism Theory & Research   
This week's issue of the American Association for the Advancement of Science journal *Science* (June 24, Volume 308, Number 5730) includes an article: "Autistic Brains Out of Synch?" (pp. 1856-1858) by Ingrid Wickelgren. Here are some excerpts:

Researchers have struggled to find an overarching conception of the disorder. And in the past 3 years, they have accumulated tantalizing data suggesting that the problems in autism result from poor connections in the brain areas rather than from defects in a specific brain region. "A confluence of investigations point to a model of autism in which different brain regions are not talking to each other very well," says Martha Herbert, a pediatric neurologist at Harvard Medical School in Boston. "This is a big paradigm shift, because people have been looking for the 'brain address' of the problem in autism."

Imaging experiments show a lack of cooperation between different brain areas, as well as abnormalities in the volume and distribution of the white matter that insulates neuronal signals. Other studies have found oddities in the organization, number, and size of neurons in certain brain regions that could give rise to connectivity problems. "It's the most exciting set of developments in the field to date," comments Helen Tager-Flusberg, an autism researcher at Boston University School of Medicine.

Foxp2 gene plays an essential role in the development of social communication
The association between Foxp2 and language was first identified in a family in which half the members had severe speech and grammar impairments. Studies showed that all the affected family members had a mutation in the Foxp2 gene. The gene is found on a region of chromosome 7 that is linked to other disorders that affect speech, including autism and specific language impairment (a broad diagnosis used to describe communication difficulties in the absence of mental retardation, hearing loss, or emotional disorders).


Girls' autism 'under-diagnosed'
Girls with autism may not be identified because they do not show traditional signs of the disease, an expert warns. Hyperactivity, and interests in technical hobbies have been seen as characteristics of the disorder. But Christopher Gillberg, of the National Centre of Autism Studies, said girls were often passive and collected information on people, not things.


Undetected autism in women manifests as anorexia nervosa
Professor Christopher Gillberg says that autism, characterised by defects in communication and social interaction, also makes many anorexic patients unresponsive to traditional treatments and may be responsible for anorexia's low recovery rates. Professor Gillberg believes that although autism is thought to be predominantly a male problem, affecting up to four times more boys than girls, the disorder has been overlooked in women because their autistic traits present themselves differently. For example an obsession with counting calories may be an outward sign of autism. His research has shown that a small but important minority of all teenage girls, with anorexia nervosa in the general population, meet the diagnostic criteria for autistic disorder, Asperger syndrome or atypical autism. He has apparently seen quite a number of cases where the anorexia has become completely entrenched because people have not understood that underlying the eating disorder is autism. Professor Gillberg says anorexic patients with autism tend to be severe cases because traditional treatment for eating disorders proved ineffective.
 

SafeMinds Praises Efforts by Robert F. Kennedy, Jr.; Article Published in Salon and Rolling Stone Makes Case for Need to Fund Research
SafeMinds applauded Robert F. Kennedy, Jr. today for his thorough and unrelenting article about links between the mercury found in preservatives such as thimerosal and neurodevelopmental disorders like ADD/ADHD and autism. The article was published simultaneously on June 15, 2005 on Salon.com and in Rolling Stone magazine. ABC World News cancelled a planned feature with Kennedy Jr on Wednesday 22 June.


On Autism's Cause, It's Parents vs. Research
A review article in the New York Times reports that
the Centers for Disease Control and Prevention, the Food and Drug Administration, the Institute of Medicine, the World Health Organization and the American Academy of Pediatrics have all largely dismissed the notion that thimerosal causes or contributes to autism. Five major studies have found no link.
"Yet despite all evidence to the contrary, the number of parents who blame thimerosal for their children's autism has only increased. And in recent months, these parents have used their numbers, their passion and their organizing skills to become a potent national force. The issue has become one of the most fractious and divisive in pediatric medicine.
"Parents have filed more than 4,800 lawsuits - 200 from February to April alone - pushed for state and federal legislation banning thimerosal and taken out full-page advertisements in major newspapers. They have also gained the support of politicians...  Robert F. Kennedy Jr. wrote an article in the June 16 issue of Rolling Stone magazine arguing that most studies of the issue are flawed and that public health officials are conspiring with drug makers to cover up the damage caused by thimerosal."


Is there an autism epidemic? Doesn't look like it

A report in the latest issue of Current Directions in Psychological Science, a journal of the American Psychological Society. The review is by Morton Ann Gernsbacher and H. Hill Goldsmith who are Professors at the University of Wisconsin-Madison (both also have autistic children) and Michelle Dawson, a Research Associate at the Pervasive Developmental Disorders Specialized Clinic at the University of Montréal.


Living with autism: a very good story from New Zealand
Oscar Stace's life is pretty ordinary. The 19-year-old lives at home with his mum and sister, goes off to work each day and is saving for a trip to America. Normal stuff – except that he is autistic.


Global Experts Set For Autism Summit 
People with autism, their parents and carers and a host of experts in the field are invited to attend an international summit dedicated to the condition. The National Autistic Society's (NAS) annual conference in London is on September 23-24, at the Novotel Hotel in Hammersmith. Conference speakers include Dr Temple Grandin, Dr Lorna Wing who will open the conference and give an overview of the current situation facing people with autism around the world. David Ameral, Professor or Psychiatry and Behavioural Sciences at the University of California, will speak in more depth about the nature of autism and how it affects people in many different ways. Dr Ami Klin will talk about his latest research findings into the psychological and biological mechanisms that affect socialisation in people with autism. He is Professor of Child Psychology and Psychiatry and the University of Yale and author of over 60 publications in the field of autism. A special rate is available to all people with autism and their parents and carers. For more information about conference registration, visit the International Conference website at www.nas2005.org.uk or call the NAS Conference Team on +44 (0)20 8334 6517.


Autism advice centre declared a 'tremendous achievement'
A one-stop advice centre for adults with autism has formally opened in Edinburgh. The service is managed by Autism Initiatives UK and has more than 70 regular users. The centre - the first of its kind in the Lothian region and one of just two in the country - includes a resource library to provide information and advice, internet access and meeting rooms.

      


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ANNOUNCEMENTS OF EVENTS

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


Wednesday, July 6, 2005, 7-10pm, in Guelph
An introduction to Gentle Teaching: Understanding the ‘language of pain’
a workshop with Felicia Jervis



July 10-13, 2005

Toronto Summer Institute: Inclusion, Community and Diversity
The Assembly Hall - Humber College - Lakeshore Campus
“People working actively on the complex issues of inclusion and diversity in communities, workplaces and schools will want to attend this event. This Institute is for Thinkers and Doers. - for people who know there are no easy answers and who are seeking new ways of thinking and acting. This will be a unique adventure in building a learning community together. The faculty see themselves as a jazz combo who have a definite theme and a flair for improvisation - harmonizing with the participants.”
Jack Pearpoint & Cathy Hollands
Inclusion Press International & The Marsha Forest Centre: Inclusion•Family•Community
Tel: 416-658-5363 Fax: 416-658-5067
E-mail: inclusionpress@inclusion.com
Web: www.inclusion.com



July 18-22, 2005, in Hamilton

Accessibly Yours
Enhancing Environments for Wellness and Occupation
Summer Institute
McMaster University - School of Rehabilitation Science
Click for more
Includes on July 20, all-day workshop on
"Enabling Occupational Performance Through Home Renovation & Universal Design"
Click for extension of early registration discount to July 8.


July 20-21, 2005
, in Troy Michigan
Summer Institute!
Supporting resiliency and well-being throughout the lifespan
sponsored by:
Center for Self-Determination and Transition
College of Education, Wayne State University
Click for more details


July 21-23, 2005, at Niagara-On-The-Lake
Fourth Biennial Niagara Conference on Evidence Based Treatments for Childhood and Adolescent Health Problems
Presentations from 19 leading practitioners and researchers who have studied and developed treatments for anxiety disorders, depression and bipolar disorders, attention deficit hyperactivity disorder (ADHD), autism, substance abuse and bullying among other maladies. Visit conference website


July 26 and 28, in Pontiac, Michigan

Workshops in Supporting Communication

Facilitated Communication is one method used in accessing augmentative and alternative communication (AAC) equipment.  This series of two workshops provides the opportunity to learn the techniques of facilitated communication within the context of the principles common to all communication support approaches.

1. Communication Partnerships: A Framework for Support

2. Introductory Skills Workshop: Learning to Be a Facilitator
Sponsored by the Autism Society of America, Oakland County Chapter, and held in the Marriott at Centrepoint.

Thursday September 22, 2005, in North York
Official launch of Revel in the Light”
The story of Rebecca Beayni, produced by Masterworks Productions
Click for more information about premiere
Click for order form (either video or DVD)
For more about Rebecca's remarkable effect on others, read Rebecca is going to the United Nations Helen Henderson will be highlighting Rebecca's story around her video in her column in the Life Section of the Toronto Star on Saturday July 2.


October 20-23, 2005, in Toronto

Come to Your Senses....
From Theory & Research To Practice: Sensory Therapy & Disabilities
An International Conference for professionals, parents, caregivers & consumers
Presented by Muki Baum Association.

Program includes 37 presenters from 8 countries and a special presentation by Dr Oliver Sacks.


Friday October 21, 2005, 9:30am-4pm 
Regional Support Associates presentation on

"Adults with Autism Spectrum Disorders, Mental Health & Behavioural Issues"
Best Western Lamplighter Inn, London, Ontario
Presenters: J. Dale Munro, MSW, RSW, FAAMR and Liliian Burke, PhD., C.Psych.
Click for more information about RSA
including its Video Conferencing service to the Southwest Region

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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


Development and Testing of a Resource Kit for Parents of Young Adults Who Receive Individualized Funding for Support, 2004 - 2007
The goal of this project is to develop a Resource Kit that can be broadly circulated to families who receive individualized funding. It is expected to enhance the quality of life and community participation of young adults with disabilities. This five-year project will assist them in the management of the funding and their work as parents to find supports for their children and family. The Resource Kit will be developed with the 10 families who are involved in the Opening Doors project. Researchers will seek input from all families as to the content and format of such a kit. Another goal is to evaluate the Resource Kit as to its use, utility and impact. A prototype of the Research Kit will be given to all families to use during the Opening Doors project in years two to five. This study is funded by the Ministry of Community, Family and Children’s Services

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BOOKS, WEBSITES AND OTHER RESOURCES


Featuring Running Boy (aka:
Marathon),
the best-selling film in
South Korea
in 2005. It is well worth seeing anywhere in the world!
It is a movie about disability, and about the lack of tolerance society has for people who are different. Based on the true story of an autistic boy who completed the Chuncheon Marathon four years ago, the film's protagonist is 20-year old Cho-won (played by Jo Seung-woo), who was diagnosed with autism at the age of five. His mother, played by Kim Mi-Sook, is a major character in the film, vividly illustrating the hardships experienced by families living with autistic people.
"Running Boy" is probably one of the first Korean films backed with solid acting to treat the subject of mental disability without falling into the trap of romanticizing it, or resorting to a "victim" mentality. Perhaps its success is owed in part to the witty dialogue, a pleasurable surprise for audiences who are not used to that kind of humor in Korean films dealing with disability. Throughout the film, the boy's unusual verbal expressions become cheerful ways of interacting with others.
The film also honestly depicts what the disability does to Cho-won's family. His mother is determined to make him finish a
Marathon in less than three hours; while this is for her son's good, the film is also frank about how her own personal ambitions are motivating her as well. Cho-won's exhausted father, who is often intolerant toward his son, is depicted as neither evil nor a saint; the focus is mostly on his dilemmas. Overall, the film refrains from judging any of its characters; the audience will likely suspend judgment, too. They'll also feel a sense of hope, and perhaps some guilt. But the film's greatest success may be in what it's done for people in Korea who are living with mental disabilities, who finally have a film that's broken the silence about the subject.
"Running Boy" has become the most popular movie in the country (according to the Daum Internet portal), and has already had the positive effect of spreading awareness about the issue through media coverage. That in itself is a credit to the people who made the movie.
We have viewed the original movie, but apparently the film is now available with English subtitles.
Click for more

CBC Newsworld's HOT TYPE, with Evan Solomon, recently featured new books by Temple Grandin and her mother, Eustacia Cutler. Here are more details about the books which may be bought from Parentbooks in Toronto, at 201 Harbord Street , Toronto, Ontario, Canada M5S 1H6, phone 416-537-8334,  FAX 416-537-9499, toll-free 1-800-209-9182. 
Autism helps me understand animals : an interview with Temple Grandin by Nuala Calvi for the BBC.
Temple
Grandin has managed to turn her "gift" for understanding animals into a successful career. Animals in Translation, by Temple Grandin and Catherine Johnson, costs $36 from Parentbooks.

In A Thorn in My Pocket, Temple's mother recalls her as “a non-verbal, often-violent child in the 50s, when her condition was classified as "infant schizophrenia," brought on by "frigid mothering." The common remedy was to warehouse those diagnosed in institutions for the retarded. Eustacia's story is a strikingly honest story of myth and reality, angst and guilt, family and society.” $32.95 from Parentbooks.


Read the latest issue of Autism Spectrum, a newsletter from Future Horizons


Closing The Gap Forums is a discussion board exploring the many ways that technology is being used to enhance the lives of people with special needs. Please feel free to participate in the discussions listed below and share this valuable resource with friends and colleagues. There is no fee to participate. 
Visit:http://www.closingthegap.org/forums/ and check out the "Featured Discussions".


The Philia Dialogue on Caring Citizenship invites you to visit its newly designed website at http://www.philia.ca The Philia Dialogue is an initiative of PLAN Institute, which brings the
wisdom of the disability community to Philia's quest for a more inclusive society. Share your ideas and stories at the website by clicking "Have Your Say" or send longer stories to
mailto:haveyoursay@philia.ca


The Government of Canada has released three publications addressing issues related to people with disabilities: "Advancing the Inclusion of Persons with Disabilities 2004"; "Canadian Attitudes Towards Disability Issues"; and "Frequently Asked Questions." View all three at
http://www.sdc.gc.ca/en/cs/comm/sd/news/2004/041203.shtml .


ARCH: A Legal Resource Centre for Persons with Disabilities has released five free fact sheets about abuse of people with disabilities and legal avenues to address such abuse. They
are available at http://www.archlegalclinic.ca
.

Motion Picture Card for persons with disabilities will get a necessary helper into movies free or cheaply. A physician or other recognized therapist must complete form that can permit a support person to attend motion pictures (movies) for either free, or a max. fee of $3, as the accompanying person for the disabled person (this works for adults as well as for children).
Click for information and application form in English

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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 perceptions, problems and success stories, if you think others might help or benefit.

If you wish, we will not print 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


What Matters is That I Myself Believe

When I see glowing sunshine, I believe,
Though I am given all the scientific facts;
When I feel dewy raindrops, I believe,
Though there are theories on how the weather acts;
When I see lofty rainbow, I believe,
As this phenomena is before my eyes;
When I feel tender snowflakes, I believe,
As I believe in clouds and sunny skies...
 
     It doesn't really matter what they say;
     To try, in essence, to explain it all away....
     What matters is that I, myself, believe,
     And just the facts I try not to retrieve.
 
When I see playful kittens, I believe,
Though where they come from is another view;
When I see ponies playing, I believe,
Though what their breed--I'll leave that up to you...
When I see trilliums blooming, I believe,
As they spread out their petals--three in all;
When I see lofty pine trees, I believe,
Despite the use of the pine wood in the hall.
 
     It doesn't really matter what they say;
     To try, in essence, to explain it all away....
     What matters is that I, myself, believe,
     And just the facts I try not to retrieve.
 
                                   -Brian Henson©2005



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