ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

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OAARSN NEWS BULLETIN
 
27 January 2006

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GENERAL AUTISM NEWS

Increases in Identified Cases of Autism Spectrum Disorders Policy Implications
By Trudy Steuernagel, Kent State University. From the Journal of Disability Policy Studies Vol. 16/No. 3/2005/PP. 138–146.
"The purpose of this article is to make a contribution to the development of policies to address the autism epidemic. It begins with an overview of the disability policy–making process in the United States and its implications for autism policy.... The second section of the article deals more specifically with the social construction of autism as a policy issue, including the policy implications of constructing autism as a mental health issue and the implications for autism policy of the emergence of the dominance of the vaccine narrative.... Part 3 focuses on federal and state governments’ institutional capacity to respond to autism. Included in this section is a discussion of the role of the states in providing access to autism services through the use of mandates.... The fourth and final section raises issues critical to the future of autism policy. We must decide what we want to accomplish with autism policy. Should we, for example, devote the bulk of available resources to finding a cure or to finding better treatments, such as behavioral and pharmacological interventions?"


National Institutes of Health Announces the Autism Research Network (ARN)
The NIH supports two major research networks dedicated to understanding and treating autism: The Collaborative Programs of Excellence in Autism (CPEA) Network and the Studies to Advance Autism Research and Treatment (STAART) Network. This website provides a single source of information about these networks and the research they conduct.

Children with autism found to have specific memory problems that may underlie aspects of disorder
If children with autism can't see the forest for the trees, that may be partly because the burden of processing all those trees at once makes it harder to lock in the scene. Researchers at the University of Pittsburgh School of Medicine and Veterans Affairs Pittsburgh Healthcare System have found that children with autism differ from other children in two specific memory capabilities. The research is in January's Neuropsychology, which is published by the American Psychological Association (APA).

The Age of Autism: The Wright approach
The head of NBC is donating more than $2 million to a Baltimore research institute to do something innovative: listen and learn from the parents of children who have autism. Bob and Suzanne Wright's organization, Autism Speaks, is giving $2.3 million to the Kennedy Krieger Institute to fund the first year of development of an autism database that eventually will connect parents, educators and researchers. The idea: Through an open, interactive process, those participating will be able to share information, be part of ongoing studies and look for clues to causes and treatments for autism spectrum disorders, which now affect 1 in every 166 U.S. children. The Wrights' involvement follows the diagnosis of a grandson with autism. Wright, chairman and CEO of NBC Universal and vice chair of General Electric, founded Autism Speaks (www.autismspeaks.org) with his wife last February. (Dan Olmsted's column for UPI)

Asperger's call to boost business
Scottish companies have been encouraged to boost their business by taking on people who have Asperger's Syndrome. A conference in Edinburgh has been highlighting the business case for employing people with the condition. People with the condition have problems with the way they communicate with and relate to others. The National Autistic Society (NAS) said an estimated 50,000 people in Scotland have the disorder, however most are struggling to find employment. Only one in 10 people with the condition are in full-time employment.

Eat To Live: What you eat is how you think
Feeding Minds is a new study by Sustain, a Britain-based alliance for better food and farming, in conjunction with the Mental Health Foundation. It points out that over the past 50 years the delicate balance of vitamins, minerals and essential fats we consume has altered dramatically. Changes in our eating habits may be linked to depression, attention deficit hyperactivity disorder, schizophrenia, autism and Alzheimer's.

The Hayes horticulture project: Steve's story
A good story about the benefits of a National Autistic Society (UK) program for a man with Asperger's Syndrome.

All Party Parliamentary Group on Autism (UK)
The APPGA is a formal cross-party backbench group of MPs and Peers who share an interest in autism and Asperger syndrome. It was set up in February 2000. Its role is to campaign in Parliament for greater awareness of autism and Asperger syndrome, and to lobby the Government for improved services for people with autism and Asperger syndrome, and their carers.
A model for Canada, where a father of an autistic child has been elected as a new federal MP?

Help for autism carers
Help! run by the National Autistic Society Scotland, is a one-day programme that will provide advice and support on caring for someone with autism.
A model for Ontario?

Pilot project reaches out to Airdrie and area families
The Autism Aspergers Friendship Society (AAFS) aims to provide respite care in a recreational environment; promote socialization; nurture development of leadership skills in young adults; and incorporate children into the planning process.

Another model for Ontario?
Scottish Autism Service Network (SASN)
based in the National Centre for Autism Studies, is embarking on an audit of local autism services and resources across Scotland.
Established in November 2003, the National Centre for Autism Studies is located in the University of Strathclyde Faculty of Education. NCAS is linked with several external partners and is self-funding. NCAS comprises three strands of excellence in relation to autism - research excellence, practice excellence and teaching excellence - with expertise from a multi-disciplinary staff and visiting professors. The Centre already has a developing research profile, is engaged in clinical diagnostic developments and provides a multi-professional Postgraduate Certificate, Diploma and Masters in autism. It is an inclusive organisation with an Advisory Board drawing representation from health, education, social services and the voluntary sector including a Board member with an Asperger diagnosis. A founding partnership has been formed with the Scottish Society for Autism in relation to a new National Diagnosis and Assessment Service, of which one of the co-directors of NCAS has been invited to be clinical director.

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SPECIAL ANNOUNCEMENTS FOR ONTARIO

Transforming Developmental Services in Ontario
Since mid-2004, the Ontario Ministry of Community and Social Services (MCSS), with some agencies and organizations representing vulnerable people community partners have been  engaged in a "transformation process".  Click for the brief statement on the Ministry website
You may use Google to find many reports about the policy forums held over the winter of 2004-5, by typing "transforming developmental services Ontario" in the Search window. OAARSN carries reports of most of them.



Special Services at Home funding now portable
People with an intellectual disability are now eligible to access Special Services at Home funding while living outside of the family home. It’s a move welcomed by the Special Services at Home (SSAH) Coalition, a group advocating to ensure families in Ontario receive the support they require through the SSAH program. It could help adults through a transition towards some indepdence of their families, though more funds would be needed.
In 2003-2004, 20,222 families used SSAH.
For more about SSAH, visit the SSAH Coalition's website


Common Vision for Real Transformation

Four provincial organizations that represent individuals with disabilites and their families collaborated to produce a document on what is required for meaningful transformation: Family Alliance Ontario, People First Ontario, Special Services at Home Provincial Coalition, and Individualized Funding Coalition for Ontario.
Common Vision for Real Transformation’ is a two-part newsletter produced by these four organizations. It identifies the principles and directions necessary to transform developmental services.  Distributed in print since the late summer of 2005, Common Vision may now be read on the IFCO and FAO websites. This newsletter was recently presented to the Ministry of Community and Social Services and the Ministry of Health and Long Term Care. This newsletter can also be used to help Ontarians respond to the public consultations on the MCSS Transformation policy blueprint which is expected to be made available for public input sometime in the coming months.  “Common Vision for Real Transformation” is now available on the IFCO and FAO websites. Read this important document online or download it from here.
You are encouraged to share this vision and to make your position known to government representatives.


Individualized Funding Coalition For Ontario
IFCO's website, maintained by Joyce Balaz, contains much up-to-date and relevant material too encourage persons and families who want to direct their own lives. Note a new document
Building a New Story: Transforming Disability Supports and Policies : Revisiting In Unison: A Canadian Approach to Disability Issues 1997. A commentary by John Lord, Judith Snow and Charlotte Dingwall, for the Individualized Funding Coalition for Ontario (September 2005).
We urge you to join the IFCO as a individual or organizational member, and help along the transformation of supports for vulnerable citizens in more sensitive, person-centred ways.

 

Study the Ontario Federation of Cerebral Palsy's
Proposed Resolution to the Ontario Government on Individualized Funding,
as a result of the October 2005 Annual Conference



Guide to Individualized Funding

A 95-page guide from the North Shore Disability Resource Centre, North Vancouver, BC.


Creative Supports for Vulnerable Citizens

RESOURCES FROM THE GUELPH SPRING CONFERENCE, 2005  
Audio and video recordings of the Guelph Spring Conference in April 2005 have been edited into:
-summary videotape of the essence and highlights of the conference

-a print publication of edited text transcripts of the presentations and of the displays

More than 180 people joined in the full program that opened with a keynote address by John Lord on “Creative Supports that Work: Values, Principles and Processes.”
Then there were four parallel workshops:

Judith Snow on “Building Supports with Individuals”
Barbara Leavitt on “From Housing to Creating My Home”
Peggy Hutchison on “Building Meaningful Supports for Work and Recreation Experiences”
Marlyn Shervill, Alice Quinlan and Michelle Friesen on “How Families and Communities
Can Make Creative Options Work: The Windsor-Essex Experience”
Throughout the day there were many displays by organizations from all over southern Ontario. Several creative initiatives were featured in the early afternoon session. John Lord gathered up the day’s ideas and strategies in a final plenary session, so that we could all “go home with awareness.”

The videotape and book have been produced by Guelph Services for the Autistic, which thanks Kerry's Place Autism Services and the Community Mental Health Clinic in Guelph for grants to help us make these resources available at modest cost.
Click for more details and order form


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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

Please Note:
Geneva Centre for Autism Toronto Calendar of Training Events
Click on title for Fall and Winter 2005-2006.
Click to register online
For questions, contact Event Coordinator Claire Shave at Ext. 235
Tel: (416) 322-7877
Toll Free: 1-866-Geneva-9
Fax: (416) 322-5894 or cshave@autism.net

Autism One Radio Schedule 
A Worldwide, Web-Based Radio Station for the Care, Treatment, and Recovery
of Children with Autism
http://www.autismone.org/radio

January 6, 16 and 30, 2006
, 6:30-9:30pm, in Whitby
Gentle Teaching: a three-part introductory workshop series
led by Felicia Jervis
Gentle teaching creates a non-violent culture that focuses on four primary goals: teaching the person to feel loved, loving, safe and engaged.
Sponsored by Durham Association for Family Respite. $5 donation appreciated
Contact and RSVP: Joanne Partridge at phone 905-427-3541 X 304


January 27 and 28, in Sudbury

Road to Understanding
A unique two-day conference (at the Radisson Hotel) paves the way to a better understanding to autism, bullying and social inclusion. The first part of the conference, entitled Autism and Inclusion is designed for educators and features renowned speakers from across Canada and the U.S. 
Click www.gdm.on.ca for more details.


February 3-5, 2006, in London
Messengers of Hope: a youth conference with Jean Vanier
  • Gather to share & celebrate initiatives of hope
  • Workshops in the spirit of mutuality, peace & action
  • Designed for diverse youth ages 16 – 30
  • Seminars by leading Canadian humanitarians
  • Creative expression through music and art
  • Offered by L'Arche London at King's University College, London, Ontario.
  • Fee: $75 per person. Click on title for more and to register


February 25, 2006, in Guelph
Agency Information Fair for families and individuals with disabilities
in partnership with Public and Catholic School Boards and Family Counselling & Support Services Guelph-Wellington.
Click for more details


March 4, 2006, 10am or 2pm (choice of two times)
Disability and Estate Planning: a seminar with Ottawa lawyer Kenneth Pope
At Ignatius Jesuit Centre of Guelph
Sponsored by Family Counselling and Support Services and FASD Parent Support Group of Guelph
See more at www.kpopelaw.ca
Register by calling 1-866-KEN-POPE or contact sharon at sgbrethour@on.aibn.com


April 8, 2006, in Arthur (North Wellington County)
Agency Information Fair for families and individuals with disabilities
in partnership with Public and Catholic School Boards and Family Counselling & Support Services Guelph-Wellington.
Click for more details

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FOCUS ON WATERLOO-WELLINGTON REGION OF ONTARIO

Guelph Services for the Autistic: 2005 Annual Report
GSA was incorporated as a non-profit charitable organization in 1980. In 1997, GSA redefined its mission to be a housing trust, which is our central and continuing role. Our mission and main focus is to help adults with autism to have their own homes and to live with dignity and safety in our communities, supported by family and friends, and with self-directed planning and individualized funding of necessary services.

Our 25th year has been distinctive for partnerships with other organizations that support vulnerable people. Our ASPIRE project is reaching its end, and converging with plans for a regional autism community and centre of autism expertise and services—known by the acronym ACES. Click on the title to read the annual report.

GSA’s most ambitious effort so far, the Guelph Spring Conference on Creative Supports for Vulnerable Adults in April 2005, also involved productive partnerships. A contribution to the whole Ontario community that is concerned with vulnerable people, this event was so popular that we decided to record and edit the presentations. We have now produced a videotape and printed book on Creative Supports for Vulnerable Citizens. Click for more details and order form
 
Plans for 2006 include a spring colloquium of representatives of supports groups and service agencies on developing more person-centred supports for adults with autism in our Waterloo-Wellington region. GSA’s role as housing trust has been attracting attention and requests for models and templates. So we are producing a manual of template procedures and documents that may be shared with families and organizations.
Click to read the whole report
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BOOKS, WEBSITES AND OTHER RESOURCES

DOOR 2 Adulthood
During the past two years, we have kept you posted with the planning of this valuable resource. You are invited to check it out now, for your own use and enjoyment, or to recommend to to others. Please also ensure that your favourite transition services, programs and resources are included. Click here for an alphabetical list of
about 240 services and resources about the transition to adulthood in Ontario that have been entered so far. If you notice anything that should be included, please email e-chat@ablelink.org
Yani Hamdani
Project Coordinator
DOOR 2 Adulthood Project
416-425-6220, x 3212

New book released earlier this month--this message from author and publisher:
The Theorem: A Complete Answer to Human Behaviour (O Books, John Hunt Publishing Ltd. ISBN 190504710X) by Douglas M. Arone was released in twelve countries and is now available in every major bookstore and bookstore chain. "The Theorem is a comprehensive new behavioral theory and model that reveals some startling insights about Autism."
 
Kitchener Public Library's Autism Collection
Kitchener Public Library established an Autism Collection two years ago, with generous
support from Waterloo-Wellington Autism Services. Read this update about the Autism Collection

Click on the following URL "hot key" to reach a listing in title order of all the books, videos etc in KPL's remarkable Autism Collection. Search KPL Autism Collection
You can then use the Sort/Limit button on the top of the page to narrow down to what they are really looking for – for example the author’s name, or the date order - so all the new
items
come to the top, or limit to video or DVD, etc.

Ashoka: social entrepreneurs, innovation, impact
Ashoka's mission is to shape a citizen sector that is entrepreneurial, productive and globally integrated, and to develop the profession of social entrepreneurship around the world. Ashoka identifies and invests in leading social entrepreneurs— extraordinary individuals with unprecedented ideas for change in their communities—supporting them, their ideas and institutions through all phases of their careers. Ashoka Fellows benefit from being part of the global Fellowship for life.
Ashoka was founded in 1980 upon the belief that social entrepreneurs deliver the highest leverage and impact society-wide for addressing social problems. Thus he established Ashoka to empower social entrepreneurs-and their new ideas-with financial backing and a professional framework that help them spread their ideas and innovative solutions, individually and collectively.

Ashoka's Changemakers--journal for Oct/Nov 2005

How to Change the World:First Steps toward Becoming a Social Entrepreneur
Highly recommended article from the journal in February 2004.

How to Change the World: Social Entrepreneurs and the Power of New Ideas
Highly recommended book by David Bornstein (2004).
"What business entrepreneurs are to the economy, social entrepreneurs are to social change. They are, writes David Bornstein, the driven, creative individuals who question the status quo, exploit new opportunities, refuse to give up--and remake the world for the better.
"How to Change the World tells the fascinating stories of these remarkable individuals--many in the United States, others in countries from Brazil to Hungary--providing an In Search of Excellence for the social sector. In America, one man, J.B. Schramm, has helped thousands of low-income high school students get into college. In South Africa, one woman, Veronica Khosa, developed a home-based care model for AIDS patients that changed government health policy. In Brazil, Fabio Rosa helped bring electricity to hundreds of thousands of remote rural residents. Another American, James Grant, is credited with saving 25 million lives by leading and "marketing" a global campaign for immunization. Yet another, Bill Drayton, created a pioneering foundation, Ashoka, that has funded and supported these social entrepreneurs and over a thousand like them, leveraging the power of their ideas across the globe.
"These extraordinary stories highlight a massive transformation that is going largely unreported by the media: Around the world, the fastest-growing segment of society is the nonprofit sector, as millions of ordinary people--social entrepreneurs--are increasingly stepping in to solve the problems where governments and bureaucracies have failed. How to Change the World shows, as its title suggests, that with determination and innovation, even a single person can make a surprising difference. For anyone seeking to make a positive mark on the world, this will be both an inspiring read and an invaluable handbook. It will change the way you see the world."

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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



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