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
19 June 2003





ABOUT OAARSN NEWS
Note the wealth of news, announcements and other links in our weekly OAARSN News Bulletins which are archived on our website. Click for the list of OAARSN bulletins.

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AUTISM IN THE NEWS

CDC telecast on June 20:
Autism Among Us: Rising concerns and the public health response
A national satellite broadcast and webcast, sponsored by The Centers for Disease Control and Prevention (CDC) on Friday 20 June 2003, 2-3 pm ET

The persisting autism mystery
A status report in the Harvard Mental Health Letter.

Putting a human face on the needs of family care givers
U.S. Sen. Barbara Mikulski wants to pass legislation for a tax credit to help families with the expense of caring for loved ones with chronic-care needs. The question is: Just what kind of expenses qualify?

Man loses home but finds strong safety net
A tragic story of how an autistic man in Philadelphia had a million-dollar estate (accumulated through a lifetime of work by his father) stolen by his lawyer.

The role of caregiver strain and other family variables in determining children's use of mental health services. An article in Journal of Emotional and Behavioral Disorders, 2003-07-01

Obstacles to disabled remain
White paper report on ten years of Japanese government policy. 

Liberals consider deep cuts
The Brtiish Columbia government is considering $222 million worth of cuts to programs for abused and disabled children and adults next year, including Behavioural Support for Children with Autism program to save $3.2 million. Critics claim these cuts could create widespread "health and safety risks" for B.C.'s most vulnerable citizens.

NAAR funds autism research 
The National Alliance for Autism Research has recently committed nearly $5 million to fund 50 research grants and fellowships in the U.S., Canada and Europe focusing on a wide range of disciplines, including the neurosciences, language and communication, behavioral sciences, genetics and epidemiology.

Toxic metal clue to autism
A study of mercury levels in the baby hair of children who were later diagnosed with autism has produced startling results. The babies had far lower levels of mercury in their hair than other infants, leading to speculation that autistic children either do not absorb mercury or, more likely, cannot excrete it.

Mercury 'linked to autism'
Children who develop autism may do so because they have problems processing the toxic mettal mercury, researchers have suggested. 

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ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

See details of more events on OAARSN Bulletin Board and Calendar, and our archive of past OAARSN news bulletins.

Please send submissions for this news bulletin or for the OAARSN Calendar and Bulletin Board in plain text format by email to ebloomfi@uoguelph.ca with "announcement" at the beginning of the subject line.
Please provide details of the following as BRIEFLY as possible: 
 Name of Event
 Main Speakers and Topics of Event 
 Date of Event 
 City and Location of Event 
 Contact information to learn more about event 
 Please Do Not Send Files Or Brochure Attachments

an announcement by Gail Hurren of Kerry’s Place Autism Services
Wellington Needs Analysis Survey Results

Between January and April of 2003, Kerry's Place Autism Services with the assistance of local service providers and Boards of Education, completed an Autism Needs Analysis with the Guelph-Wellington County area.  The information regarding the context of the Needs Analysis as well as the survey distribution is included within the attached report.  Please keep in mind that the survey was done to assist Kerry's Place Autism Services – Community Services in identifying the KPAS supports that would have the maximum benefit for individuals and families in Wellington.  The Needs Analysis results are designed to guide KPAS “next steps” in Wellington.

Some of our immediate next steps are:
1. Booking Long Term Planning Workshops focusing on the (1) Legal & Estate Planning and (2) Personal Supports Planning.
2. Setting up Resource Day Services in North Wellington area as well as Fergus and Guelph
3. Following up with SSAH supports re: collaborative approaches in training
4. Setting up Family Support Groups in North Wellington and Guelph.  These social groups will have a mixture of time to talk amongst each other and guest speakers. 
5. Setting up Social Groups for fall for school age children
6. Further connecting with ASO

We want to express our gratitude to all who took the time to complete the survey.  Your input and comments have been extremely helpful.  We also want to thank the community agencies and Boards of Education for all the assistance in the distribution of the surveys in a manner that allowed for confidentiality. 

Click on the following link to read the full report in PDF (you will need Adobe Acrobat):
Wellington Autism Needs Analysis report

For further information on plans for Kerry's Place Autism Services – Community Services Supports in Wellington, in the current fiscal year click on this link.
An ASD Working Group has been set up for Wellington-Guelph and meets next on June 26th, 2003, 9-11 am. If you want to know more, please contact Jim Timmins phone 519-763-5812 or via email at jtimmins@kerrysplace.org

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progress report by Nancy Cherry of Waterloo

9-1-l Protocol and Crisis Plans
Nancy Cherry of Waterloo has begun a project with the hope of accomplishing several things: 
1. developing a template for calling 9-1-1 should the primary caregiver be unable to make the call 
2. registering with the police so that when a 9-1-1 call is placed there is an electronic alert displayed that gives background information 
3. registering with the local hospital or crisis clinic to avoid the intake procedure when dealing with an out-of-control individual who has special needs and may be non-verbal 
4. finding a tracking device to monitor children who regularly wander (and adults who want to develop more independence of movement) 

Nancy has made many useful contacts. One meeting she has planned is set for Thursday July 10 with a company in Toronto that could build on its existing products to make a (wireless interactive) tracking device that would also hold vital medical and other personal information. If you are interested in learning more about Nancy's project or this meeting, please contact Nancy at phone (519) 884-3309 or email nancy.cherry@sympatico.ca

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events this weekend; see also OAARSN Bulletin Board (Events) and Calendar

Friday, June 20 and Saturday, June 21, 2003 in Cambridge, Ontario.
Autism Society Ontario's Annual Autism Conference and General Meeting
Guest presenter and keynote  speaker - Dr. Kathleen Quill. 
Click for Program and registration form
For more information call 416-246-9592 or mail@autismsociety.on.ca

June 21 & 22, in Vancouver
ANCA Foundation, 4th annual conference
Discovering the autistic transformation: 
Empowering the autistic community
For autistic teens & adults and families, professionals and paraprofessionals involved in raising, supporting and educating autistic individuals.
Visit the ANCA website

June 21 & June 22, 2003 
Ryerson University, Toronto, Ontario
Open Windows Essential Training: BIOMEDICAL CONFERENCE
Click for report of similar conference in Ireland in March
www.autismcanada.org   Call (905)-332-4766 
 

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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

Stan Woronko advises on the results and next steps following the press conference at Queen's Park, Toronto on June 16, 2003:
Issues are individualized funding, SSAH, citizenship, choices, options, adequate
funding, families' involvement as key stakeholders. Organized by the Peel Family Network, this event and the issues are relevant for all people with special needs in Ontario. 
Read the background and agenda

Stan's report on the day at Queen's Park:
"We had a good turnout for the press conference at Queen's Park. Over 20 people
came to the Media Room and most of the group went to the 6th floor in Hepburn
Block after lunch to ask for a meeting with Minister Brenda Elliott. She stayed
in hiding but she did send an emissary to greet us. We did manage to schedule a
meeting with the Minister for next Tuesday morning for the Peel Family Network,
and we have a commitment from her to meet with Family Alliance Ontario in
August.
"The lesson is clear. It's impossible to get a meeting scheduled with the
Minister if you request by phone or mail. But you can get one immediately if you
show up as a group in person. Simple really. Groups seem to make them very
uncomfortable, even more so with wheelchairs around. Everyone was very polite,
but our presence seemed to put pressure on them. 
"I am serious. If you want attention, show up in person.
"Every family present individually asked for a meeting with the Minister, and
Brenda Lewis (Deputy Minister's assistant) carefully and with great courtesy
took down everyone's name, address, phone, and some notes about their
grievances. They were all promised replies. The families made it clear that they
will take it as an insult if they receive any more run-around form letters.
"While we were at it, we also asked for a meeting with the Deputy Minister, John
Fleming. His assistant said she'd pass on the request to him and get back to us.
He wasn't in today.
"See the attachments for our press kit. In the kit, we also tabled a request for
the Minister to meet with the SSAH Provincial Coalition. We leave it up to the
coalition leaders to follow up on that. 
"We expect an article in the Toronto Sun, but we don't know about the other
papers. 
"I presented along with Joyce Balaz from London. It went well, but we were
disappointed that the Liberal Party did not have our agenda as a priority for
question period in the Legislature. Thirteen of us met with Leona Dombrowsky,
the liberal critic for Community, Family and Childrens' Services, for about 40
minutes before the press conference. She said they might raise a question on our
behalf tomorrow or in the days ahead.
"Families who came seemed to get re-energized to carry on with renewed effort
until the job gets done. They are meeting tomorrow night to plan their Tuesday
morning meeting with the Minister."
-Stan Woronko for Peel Family Network sworonko@sympatico.ca

Click for actions requested with explanation
Click for FamilyNet's account of the rally
Click for table summarizing main features of Individualized Funding in relation to traditional agency services

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HELPFUL RESOURCES

Visit autismconnect
Exciting on-line discussion forum and [autismjobs] 
 

CAIRN Updates <updates@cairn-site.com>
The Canadian Autism Intervention Research Network is the newest source of information on early diagnosis and intervention for children with autism spectrum disorders.

Browse the website at www.cairn-site.com for proven, evidence-based research findings  from around the world. Ask questions, discuss issues and take part in on-line polls. Learn about other resources in Canada, the U.S. and Europe. Tell us what you need to know and help decide the shape of future studies. We’ll even send you monthly updates so you don’t miss any of the latest developments in autism research.
Does ABA work for older children?
What role can (or should) drugs play in treating serious behaviour problems?
Is the connection between autism and gastrointestinal disorder real or imagined?
Is Vitamin B-6 an effective therapy?
What role does genetics play?
What works and what doesn’t when it comes to skill development?
How can you make every stage of your child’s life the best it can possibly be?

We search the world to bring you the latest and best evidence on autism – research that helps you be a better parent, a better clinician, a better teacher, a better policy maker.

Canadian Autism Intervention Research Network
The Offord Centre for Child Studies
Faculty of Health Sciences, McMaster University
107 Patterson Building, Chedoke Site
1200 Main Street West
Hamilton, Ontario, Canada L8N 3Z5

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AUTISM RESEARCH AND PUBLICATIONS 

Autism: The International Journal of Research and Practice. 
Volume 07 Issue 02 - Publication Date: 1 June 2003
Editorial
Articles
Parental identification of early behavioural abnormalities in children with autistic disorder
Robyn L. Young, Neil Brewer and Clare Pattison Flinders University of South Australia
http://www.sagepub.co.uk/journals/details/issue/abstract/ab032482.html
Cognitive-behavioral treatment of obsessive-compulsive disorder in a child with Asperger syndrome: A case report
Judy Reaven and Susan Hepburn University of Colorado Health Sciences Center, USA
http://www.sagepub.co.uk/journals/details/issue/abstract/ab032483.html
Prevalence of chronic gastrointestinal symptoms in children with autism and autistic spectrum disorders
Cynthia A. Molloy and Patricia Manning-Courtney Cincinnati Children's Hospital, USA
http://www.sagepub.co.uk/journals/details/issue/abstract/ab032484.html
Intuitive psychology and physics among children with autism and typically developing children
Lynne Binnie and Joanne Williams University of Edinburgh, Scotland, UK
http://www.sagepub.co.uk/journals/details/issue/abstract/ab029093.html
Pattern of semantic errors in autism: A brief research report I. 
Vogindroukas and V. Papageorgiou Psychiatric Hospital of Thessaloniki,
Greece and P. Vostanis University of Leicester, UK
http://www.sagepub.co.uk/journals/details/issue/abstract/ab031016.html
Social and cardiac responses of young children with autism
Marian Sigman University of California at Los Angeles, USA , Cheryl Dissanayake La Trobe University, Melbourne, Australia , Rosalie Corona and Michael Espinosa University of California at Los Angeles, USA
http://www.sagepub.co.uk/journals/details/issue/abstract/ab032488.html
Research into early intervention for children with autism and related disorders: methodological and design issues. Report on a workshop funded by the Wellcome Trust, Institute of Child Health, London, UK, November 2001
Tony Charman Institute of Child Health, London, UK and Patricia Howlin St George's Hospital Medical School, London, UK
Letters to the editor
Book Reviews
Hobson, Peter, The Cradle of Thought, reviewed by David Potter
Sherratt, D. and M. Peter, Developing play and drama in children with autistic spectrum disorders, reviewed by Ann N Garfinkle
Newport, Jerry and Mary Newport, Autism/ Asperger's and Sexulaity: Puberty and Beyond, reviewed by Jean-Paul Bovee

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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
 

Sharing the Voices of FC Users:
Vision for Sharing the Self-Expression of People who use Facilitated Communication 
An invitation by Chris Pentzell whose brother Nick writes poetry with FC. 
 

Self-Advocate Invites Comments and Perceptions of Persons with Autism
Michelle Dawson of Montreal was diagnosed with autism as an adult. Though she had a blameless record, her employer (Canada Post) made conditions impossible for her to continue working when she revealed her diagnosis. 
As well as fighting her dismissal through the Human Rights Commission, Michelle is involved in several other forms of legal action. She is troubled by several tendencies in autism advocacy. One is the way children and adults with autism may be portrayed as monsters who have ruined their families' lives, and the use of terms like "scourge", "calamity" and "plague" to describe autism spectrum disorders. She deplores the way autism groups seem to condone the actions of parents or other caregivers who have been so desperate that they have killed their autistic children. She warns of some likely consequences of the rhetoric about "curing" and "eradicating" autism. She is all in favour of early intervention designed for individual children. But she fears that the advocacy of ABA because it is "medically necessary" might result in compulsory intervention for all people with autism with only one approach that would not suit all and would be inadequate for most. 
Michelle says: "For things to change, people with autism must be involved." She wants to reach Canadians who are looking at autism from a human rights point of view. She invites advocates for ABA to consider the question: "Why is it wrong to be autistic?"

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