ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

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OAARSN NEWS BULLETIN
 
3 February 2006

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GENERAL AUTISM NEWS

Researchers Investigate Immune Dysfunction in Autism Using Donated Brain Tissue
A paper published in 2005 in the International Review of Psychiatry from the lab of Carlos Pardo, Diana Vargas and Andrew Zimmerman at Johns Hopkins Medical School summarizes past and current research investigating the role of abnormalities in immune system function, and how these changes affect brain development in autism spectrum disorders. The researchers have found an active and ongoing neuro-inflammatory process in the cerebral cortex, white matter, and notably in the cerebellum of post-mortem tissue obtained from donors with autism compared to tissue from non-affected donors.


The Age of Autism: New test of gold salts
A Columbia University scientist plans to test whether gold salts improve the functioning of "autistic mice" -- a step toward finding whether they could help children with autism. The compound will be given to mice that have been bred to be susceptible to thimerosal, a mercury-based preservative in children's immunizations until recently. Some researchers and parents believe thimerosal is implicated in the explosion of autism diagnoses over the past decade, though federal health authorities say that theory has been discredited. In previous research, Hornig found that the susceptible mouse breed shows autistic-like behaviors, including self-mutilation, when given thimerosal at doses proportionate to those children received until recently. Age of Autism reported last year that the first person ever diagnosed with the disorder improved significantly after treatment with gold salts.

Autism act gets Ulster parties' backing
Northern Ireland's main political parties today joined with a leading autism charity to campaign for specific legal rights for autistic people. Representatives of the DUP, UUP, SDLP, Sinn Fein and Alliance Party joined with senior staff from Autism Northern Ireland this morning to rally behind a campaign to bring The Northern Ireland Autism Act into reality. The Director of Autism Northern Ireland said:
"ASD requires a clearly identifiable unique programme of care with a strategic implementation of service development and this is what the proposed Northern Ireland Autism Act will seek to enshrine in legislation.
Putting ASD in mental health [as the Bamford Review threatens to do automatically] is like classifying alcoholism as a physical disability because people can fall down when they are drunk. The Northern Ireland Autism Act will guard the human rights of those who suffer from ASD as well as protect the roles of their carers."

Welcoming Workplace: Specially-Designed Warehouse Will Have Jobs For People With Disabilities
Randy Lewis, father of a 17-year-old son with autism and a senior vice president of logistics and distribution for the national drug store chain Walgreens, is using his job to help find an answer to the questions: "What's going to happen to them when you aren't there?" and "What's the world going to do with them?" He is one of the architects of an initiative to make the workplace more accessible to people with cognitive and physical disabilities. Walgreens last week announced plans to build a specially designed, $175 million warehouse in Windsor - and to set aside a third of the jobs for people with disabilities. The facility is expected to open in 2008, with employment eventually growing to 550 workers.

Web site debuts to help disabled make transition
Transition Map Delaware, a Web site launched this month by the University of Delaware's Center for Disabilities Studies. The site is meant for youths and young adults who need to find information about everything from medical care to social events and housing options. Whether they are planning their lives after they graduate from public school or looking for places to play sports, they'll find names and numbers, and lots of information.

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SPECIAL ANNOUNCEMENTS FOR ONTARIO
John Toft, Secretary, Families Matter Co-operative Inc, reports on a workshop about
Individualized Funding on Saturday January 28th, hosted by the Co-op and Lifetime Networks of Ottawa. Click for a report. People with developmental disabilities, their families and network members throughout
Eastern Ontario will be invited to a follow-up meeting in March.
Visit www.familiesmattercoop.ca for and about people with developmental disabilities.

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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
Includes Preparing Your Teen For College Feb 7.

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


March 29, 2006, evening, in Owen Sound
Shirley Sutton OT offers a workshop on sensory integration strategies for parents and educators.
For more details, contact
Laura Walton-Clouston by email at register-here@rogers.com or phone at 705-445-0695. For general information about Shirley's OT practice, visit http://www.ot-shirleysutton.com


April 4, 2006, 5-8pm, in Kitchener
Community Connections 2006:
Information for People with Disabilities in the Region of Waterloo
St Mary's High School, 1500 Block Line Road, Kitchener
Click for flyer


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


April 18, 2006, evening: in Collingwood
Shirley Sutton OT offers a workshop on sensory integration strategies for parents and educators.
For more details, contact Laura Walton-Clouston by email at register-here@rogers.com or phone at 705-445-0695. For general information about Shirley's OT practice, visit http://www.ot-shirleysutton.com


May 5-7, 2006, in Windsor
Achieving True Inclusion: Living Outside the Box

Family Alliance Ontario/Integration Action for Inclusion annual conference
Friday May 5 (evening), Saturday May 6 (all day) and Sunday May 7 (morning).
We welcome siblings, parents, whole families and friends.

More information to come, or check the Family Alliance Ontario website at www.family-alliance.com to register online in the future.   



May 15-16, in Hamilton
Stages of Autism: Adolescence and Beyond
A major two-day conference in the Hamilton Convention Centre, featuring Dr Peter Szatmari and Dr Susan Bryson as keynote speakers, as well as numerous concurrent sessions on various topics relevant to teenagers and young adults with ASDs. Click for the tentative program and to register
Please keep checking for updates.

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FOCUS ON WATERLOO-WELLINGTON REGION OF ONTARIO

Waterloo Region Developmental Services Chart
Nancy Cherry of Waterloo, ASPIRE Advocate for GSA during 2005, has compiled a detailed chart of services to support people with Developmental Disabilities. All services that could be accessed by/for children, youth and adults are shown, with those funded through the MCSS Drvelopmental Services Stream distinguished from other community services that may be helpful. The chart is accompanied by a Developmental Disabilities Resource List with names of agencies and service-providers and their contact numbers. Please click on the title to reach this chart. We recommend that you print out the chart and the two pages of resource information on 11 by 17-inch paper (tabloid size).

Thanks to Nancy for her great service to the Waterloo Region. She has also produced a list of potential resources and service-provider for adults with autism in the region--though none has a specific mandate for adults with ASD.

Please also note the
Community Connections 2006 Information Event on April 4, 2006, 5-8pm, for People with Disabilities in the Region of Waterloo. See Announcements in the section above this one.


Colloquium 2006:
Person-Centred Supports for and with Adults with Autism in Waterloo-Wellington
A full-day discussion is being organized for April 21 for representatives of autism support groups, agencies and service-providers.

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BOOKS, WEBSITES AND OTHER RESOURCES

Voices from the Spectrum: Parents, Grandparents, Siblings, People with Autism, and Professionals Share their Wisdom.

Edited by Cindy N. Ariel and Robert A. Naseef.

February 2006, Jessica Kingsley Publishers Paperback, $19.95; 1-84310-786-4; 272 pages "People with autism can be a mystery. While they seem locked in their
own worlds, they actually touch everyone around them. This new book shares the perspective of their caregivers. The contributors describe experiences of autism from the mildest to the most severe case, and share their methods of adapting. They tell both the positive and negative effects of autism on individuals and families, and pose the question: is a diagnosis on the autism spectrum a puzzle to be solved, or something to be embraced and accepted? The editors contribute essays sharing their own unique wisdom and experience. Anyone who knows a child with autism will appreciate their stories."


Videos Help Elementary School Kids Accept "Different" Students
Two new video releases are now available to help classmates in grades three through six accept children who have trouble fitting in with peers due to Asperger Syndrome or similar conditions.  The programs are elementary school versions of a popular video for middle and high school students released in 2005 titled, "INTRICATE MINDS: Understanding Classmates with Asperger Syndrome."
The new videos, produced by Coulter Video, are titled: "INTRICATE MINDS II: Understanding Elementary School Classmates with Asperger Syndrome" (16 minutes) and "INTRICATE MINDS III: Understanding Elementary School Classmates Who Think Differently" (17 minutes).  The videos are two versions of the same basic program.  The "Think Differently" version doesn't focus on any particular diagnosis, but covers children with conditions that can generate behaviors similar to those caused by AS.  Some examples of these conditions are Higher Functioning Autism, Pervasive Developmental Delay, Semantic-Pragmatic Disorder, and Attention Deficit Disorder. Both new videos feature interviews with boys and girls aged 8 through 12 who describe what it's like to have behaviors that may seem odd to others. 
The children interviewed in both videos describe their strengths as well as their challenges and show viewers the advantages of looking past some "different" behaviors.  The two programs also include "point of view" demonstrations to show kids how things might seem to them if they perceived the world as it's experienced by some of their less typical classmates.
The videos are designed to be used by teachers, parents or professionals to initiate classroom discussions where children can contribute ideas about reaching out to kids who have a hard time fitting in.
Coulter Video of Winston-Salem, North Carolina, is run by the parents of a college student who has Asperger Syndrome.  The company has produced a range of educational video programs and conducts seminars for parents of kids who have special needs.
Each of the new videos retails for $30.00 plus shipping and handling.  They're available for purchase in either DVD or VHS format at the Coulter Video website: www.coultervideo.com. Additional information about all of the INTRICATE MINDS videos and sample clips from the programs are provided on the website, which also features an online archive of articles on special needs issues. 


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.

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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.


FRONTLINE IMMERSION Experience in supporting vulnerable adults:
an
Ontario Opportunity

An Ontario man—let’s call him Alex--who lives with quite severe challenges of autism, has come up with a creative idea, with his family and friends. He lives in his own home with support and chooses the people with whom he shares his home and his time. Alex knows he is a pioneer and sees himself as a teacher and leader.

Over the past eight years, with the help of my support group I have developed a very good quality of life. I would like to share what we have learned with others. My large home has plenty of space to host people interested in learning more about support strategies such as:

  • My person-centred life plan
  • My alternative and augmentative modes of communication, deep listening by my friends, and supported decision-making
  • Support by my circle of friends and incorporated aroha entity (aka a microboard)
  • Support by a housing trust devoted to helping adults with autism to have their own homes 
  • Health and dietary interventions
  • Independence technologies to that I can do as much as possible for myself and move around my neighbourhood in freedom and safety
  • Continued learning and work that contributes to my community
  • Therapies such as music, art, horticulture and my companion dog.

Expressions of interest are invited from people who would like to learn by immersion for a period of two weeks. Two guests at one time could be accommodated, in their own rooms in a private wing. People who could be interested:

  • Family members hoping to support their adult sons or daughters in a similar kind of home.
  • Practicum students planning careers in human services
  • In-service support workers wishing to widen their experience
  • In-service agency managers wishing to learn about new options in supported living

How would interning guests learn?

  • Observing my daily and weekly life and the most effective ways I need support
  • Reading plans and viewing tapes in advance
  • Sharing in household and community activities with me
  • Practising several forms of support
  • Tutorials and individualized learning about my challenges and various support strategies, in relation to those of a wider spectrum of vulnerable people.

Why offer this immersion experience?

  • My friends and I have found that few personal support workers are prepared for the kind of respectful, self-directed support I need. We think that training for work in developmental services should include immersion on the frontlines
  • Others besides me need this kind of approach, though their exact needs may differ. What guests learn in my home can be adapted to supporting people who have somewhat different needs.

People seriously interested in knowing more about this experience are asked to send an email first to OAARSN at gbloomfi@uoguelph.ca   We will put you in touch with Alex and his support group for more information.

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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