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
29 June 2003

OAARSN NEWS

Remembering Lucie
We sadly announce the death from cancer of the Rev. Lucie Milne of Newmarket, loyal member of WWAS and keen supporter of our efforts to make autism better known in the community. An artist and writer, as well as retired minister of the Presbyterian Church in Canada and former missionary to the Bhil Field, India, she wrote articles and reviewed books for AAIWW and OAARSN. She was also the author of About Myself: Portrait of Andrew who has Autism (1998). For a sample, see Lucie's essay on "Overcoming E-fear" in AAIWW 8 (2000) page 8. You may find other reviews and essays by searching from the main page of our website and typing in her name. 
Our sympathy to Lucie’s family who have suggested that friends might care to give to autism projects in her memory.
 

New Additions to our Website

Matthew's New Job
Matthew is a young man of nearly 21 who lives with his family in one of the smaller towns of the Region of Waterloo. He has PDD and juvenile diabetes, and he and his family have had a very hard time obtaining appropriate supports from service agencies. He is able and eager to work with people who understand him. Recently he and his mother found him a little job with Mennonite co-workers in a quarry about 30 km from his home and they hope the company will be able to keep him employed. Click for the story

Temple Grandin: “AUTISM A PART OF WHO I AM”  reported by Minna Mettinen

Please note the wealth of news, announcements and other links in our weekly OAARSN News Bulletins that are archived on our website. Click for the list of OAARSN bulletins.

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AUTISM IN THE NEWS

ONTARIO WATCH

Child Advocate's office has suffered under Tories
Ontario's most vulnerable children aren't getting the help they need because of systemic problems virtually ignored by the provincial government. In a newly released report, a children's rights group said Ontario compares miserably to other provinces when it comes to protecting children under government care and helping to stop and prevent abuse.
An article by Murray Campbell in The Globe and Mail, Saturday,  Jun. 21, 2003, begins: 
"This is the context: There were no known questionable deaths of children in the care of the Ontario government in the 18 years before the Progressive Conservatives came to office, but there have been seven since then.
"There are some 23,000 children in group homes, foster homes, mental-health centres and young-offender institutions for whom the government is, in effect, the parent. The sad reality for these kids is that their parenting seems to leave a lot to be desired.
"The controversy about how well Ontario's vulnerable children are being served is played out through Child Advocate Judy Finlay, the person responsible under law for ensuring that government treats its charges fairly. Ms. Finlay has held her post for 13 years, and has enjoyed good relations with a series of supervising ministers."
Read The Globe and Mail article
Premier Eves' response

Ottawa group home's failure reflects Ministry inaction, report says
Neglect and inaction by the provincial Ministry of Community, Family and Children's Services contributed to major financial, housing and safety problems at Ottawa Valley Autistic Homes, says a report obtained by the Citizen. See also  Autistic home's reports misfiled

New standards for school autism programs: pilot project
Ten school boards across the province have been chosen as pilot sites for new standards for services and programs for students with autism, Deputy Premier and Minister of Education Elizabeth Witmer, announced today. 

Summer camp good news story from the Toronto Star
Autistic teens grasp new skills, at a day camp that offers work placements and field trips that teach basic life skills.
 

OTHER AUTISM NEWS

Autism diagnosed early: Therapy for toddlers makes 'huge difference'
Several stories from your families.

Life lesson
A good story from south Florida about how ordinary children come to realize that "seemingly simple tasks are major milestones for autistic children." 

Wendy Lawson: autism is about strengths and abilities as well as impairment and disability
Wendy Lawson, a PhD candidate in Victoria, Australia, has autism as do two of her four children.

Brain disorder that spurs genius
A perspective on autism from India.

Savant for a day
Lawrence Osborne describes for The New York Times his experience of transcranial magnetic stimulation by the Medtronic Mag Pro, operated by Allan Snyder, one of the world's most remarkable scientists of human cognition. A side-effect of TMS is that subjects can suddenly exhibit savant intelligence -- those isolated pockets of geniuslike mental ability that most often appear in autistic people. 

Mercury and Autism linked
BBC’s Radio 4's, "File on Four"  has online a superb investigative programme, with thorough research and interviews in the US as well as the UK. Click on the heading to read the text. Or you may listen again with this link then scroll down the list to "File on 4" and click on "listen."

Mental ailments in children being linked to strep
Sudden-onset OCD or tics are recognized enough to have a name: PANDAS, for Pediatric Autoimmune Neuropsychiatric Dissorders Associated with Streptococcal Infection.

Neuropsychiatry and epilepsy

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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

next weekend

July 4-6 , 2003 
5th Canadian Fragile X Syndrome and Autism Spectrum Disorders Conference. Kingston, Ontario. Click for more details

CYCLE FOR AUTISM : Help Solve the Puzzle 
 Beginning on July 6th, 2003, John Keating and Luc Vandeermeeren, both fathers of children with autism Autism Spectrum Disorders (ASD), will embark on a bicycle journey that will take them from one end of Canada to the other. They will begin the cycle in Vancouver, British Columbia and end in St. John’s, Newfoundland. It will take them 8 weeks to complete this journey. They will stop in many cities along the way. Our goal is to promote awareness of Autism Spectrum Disorders (ASD) and raise $1,000,000 in Canada for ASD research through an
 annual cross Canada Cycle for Autism. The Cycle will begin July 5 to August 24, 2003 with fundraising events held in various cities across Canada including Vancouver, Calgary, Regina, Winnipeg, Toronto, Montreal, Halifax and St. John’s. These events will not only raise funds but increase public awareness as well. Please click for the Cycle for Autism website. 
 

new announcements

August 16 & 17, 2003
Biomedical Interventions for Autism and Related Disorders
Coast Plaza Hotel, Calgary, AB
Speakers are Dr. Stephanie Cave, Dr. Vijendra Singh, Dr. Mary Megson, Dr. David Geier, Dr. William Shaw, Dr. Woody McInnis, Dr. Michael Brown, and Dr. Mark Geier
Register on-line at www.greatplainslaboratory.com/calgary

December 11-13, 2003
Annual TASH Conference, Chicago "the most inclusive and vibrant disability conference around"
Super Early Bird savings of up to $40 per person are available by registering before June 30th   If funds will be freed up for your organization after July 1st, call or e-mail -- extensions of these low rates can be made until July 15th, but no extensions will be available after that date. 
Over 400 sessions representing an incredible array of topics from a just-as-incredible group of presenters are planned . Presenters range from the authors whose names are on the backs of the books on your shelves to a great number of people with disabilities, family members, teachers, direct care staff and others who are out in the trenches turning good ideas into good lives every day. (In fact we are still accepting proposals for poster sessions -- call or see our web site for details.) Come to Chicago for one of the most invigorating and rejuvenating experiences around for a person committed to progressive disability policy, research, and social change!  Find out more about the Conference or register by clicking here:  http://www.tash.org/2003conference/ Or call to register with a credit card by phone (1-800-482-8274, ext. "0", East Coast business hours). 

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SPECIAL PROJECTS

9-1-l Protocol and Crisis Plans
progress report by Nancy Cherry of Waterloo
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 in attending the meeting, please contact Nancy at phone (519) 884-3309 or email nancy.cherry@sympatico.ca
 

Organic Foods Buying Co-op
A Guelph family has formed a buying club linked with the Ontario Natural Food Co-op. A buying club or co-op is a group of individuals who get together to buy directly from the wholesaler, thus saving money and getting access to quality products. Of particular interest to families following special diets that avoid gluten, casein and other food substances that people with ASD cannot tolerate. If you live in or near Guelph, you might ask to join this co-op. Otherwise, we may be able to connect you with a co-op in your city or region. For more information email gbloomfi@uoguelph.ca
 

Survey of CCAC Services in Relation to Autism Spectrum Disorders
Have you, as a person or family living with ASD, used services available through Community Care Access Centres? How helpful have you found them? Please let us know of your experience. Any information will be generalized, as a basis for advising other families of the value of CCAC-funded services. We will not publish your name or location. Please reply to  gbloomfi@uoguelph.ca

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ISSUES AND ADVOCACY

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

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HELPFUL RESOURCES
 

Dennis Debbaudt Newsletter: Volume One, Issue Number 3, June 2003
To subscribe, contact Dennis Debbaudt at ddpi@flash.net
Dennis Debbaudt now has three web sites: 
Autism Risk Management Project  http://www.autismriskmanagement.com/ 
http://debbaudt.topcities.com/  [about his investigative business]
The Police & Autism: Avoiding Unfortunate Situations  http://policeandautism.cjb.net/ 
 

Canadian Living carried an article in their March edition titled "Heartbreak & Joy" about a mother's struggle to raise a child with autism.  The response to that article was so great that Canadian Living has created an autism forum on their web site.  To participate, visit www.canadianliving.com/forums
 

A new Discussion Group for Adults with Autism
http://groups.yahoo.com/group/connecting2worlds/
"This group is for adults with autism to share among professionals, psychologist, psychiatrist and eductors, discussing the issues of autism from an inside perspective. It is crucial that both professionals and people of autism come to better terms of understanding each others roles in interventions, teachings, and the motives behind the interventions of people of autism. This list will hopefully help professionas within their clinical settings and or classrooms begin to understand the cause and effects of the internal reactions to people with autism from various approaches. My purpose for the list is to hopefully allow professionals a chance to learn how people of think and respond to life. It is not a place for therapy, or to dispute one's thinking, but a way to learn from each. None of the professionals on the list are to promote their business or work as in spam mail. People of autism here are not on public display and none of their words can be taken for personal gains, or copied without the consent of the individual persons permission. None of the post here can be shared off list. This list is not open to parents, as professionals need a safe place to express themselves in a mutual way that is safe for them too. Although if you are a professional who also happens to be a parent of a child with autism then you are welcomed. ** A professional is any one who devotes most of their life work to those diagnoses with ASD. If you are unsure if you meet the criteria please send
a post of introduction and it will be detrmined if you qualify."
 

London Speech and Language Centre was founded by Kerry Erle, Speech-Language Pathologist, in 1987.  Nationally recognized for excellence, our mission is to improve the social, emotional, educational and vocational advancement of individuals with communication and learning challenges. Website: www.londonspeech.com  Email: speech@on.aibn.com
"Talk about Fun” Speech Camp is a unique day camp for 3-10 year olds with speech, language and/ or learning difficulties.  We are now accepting registrations for July and August, 2003. In its eighth year, this therapeutic camp offers kids a much- needed boost in communication and learning skills over the summer months.   It is attracting a record number of campers from all parts of southwestern Ontario.  But there are still camp spots available! Each camper receives an initial screening assessment from a speech-language pathologist, an individualized treatment program and two one-on-one therapy sessions per day.  Treatment goals are addressed throughout the day using interactive games and activities. Camper-instructor ratios are kept extremely low (i.e. 3:1 maximum) to allow lots of one-on-one attention for campers. Parents are kept up-to-date on therapy progress with written reports from speech-language clinicians each day. 
London Speech and Language Centre is privately funded; however camp fees may be covered through employee health benefits (i.e. under "speech-language pathology"), extended health care insurance or severely disabled children’s benefits (i.e. under "camp" provisions).  Families are encouraged to investigate funding options prior to registration. 
Contact Information:  To register, request camp brochures or posters or to talk with one of our staff, please call (519) 642-7370.  Ask for: Terri Corriveau, M.Cl.Sc., Reg. CASLPO, Speech-Language Pathologist, Clinical Supervisor
OR Sue Ciphery. B.A., B.Ed. Director of Educational Services Camp Leader
Click for a story about Kerry Erle

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING EXPERIENCES

News about adults with autism is usually negative. OAARSN receives many appeals for advice on where to turn for help--with diagnosis and assessment, advocacy, planning for the future, alternatives to approaches that are not working. There are virtually no obvious sources of help for isolated adults with autism and their caregivers.

We know that some adults and their families and caregivers are heroically using what resources they have to achieve some successes with their challenges. Some can report remarkable progress. We invite you, as an adult or caregiver living with autism, to share your problems and your success stories, if you think others might help or benefit.If you wish, we will not publish your name or email address. You may send a message to ebloomfi@uoguelph.ca for OAARSN. Or you might use the OAARSN Discussion Board, reached by pressing the Communication bar on our main page


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