ONTARIO ADULT AUTISM
RESEARCH AND SUPPORT NETWORK
 NEWS BULLETIN



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OAARSN NEWS BULLETIN
  18 March 2007

GENERAL AUTISM NEWS

Mercury Rising: A Possible Link Between Chemical Exposure And Autism May Have Been Overlooked In The Very Earliest Cases At Johns Hopkins
An intriguing account of the first three children diagnosed with autism by Leo Kanner, with detailed evidence that their fathers worked closely with  mercury fungicides and other chemical substances.


Autism Genome Project Phase 2 Announced
Autism Speaks and an international consortium of researchers, philanthropists, government funding agencies, and participating families launched the second phase of the Autism Genome Project (AGP), a global scientific effort to discover the genes responsible for causing the autism. Read more and visit the new AGP section of our website. Plus, Autism Speaks' current funding of research into environmental factors of autism exceeds $4 million in grants. Learn details of the funded research. Canadian team launches second phase of international autism genome project


Decoding autism genes
Since the parent advocacy group, Cure Autism Now, started in 1995, a thousand families have contributed blood to the bank called the Autism Genetic Resource Exchange. CAN recently merged with the National Alliance for Autism Research and Autism Speaks, two other such groups, and all three now contribute DNA from families with autism. These databases are part of the Autism Genome Project, also reviewed in this news item from the perspective of scientists at Yale.


DNA 'glitches' tied to autism
Little glitches in the DNA of people with autism suggest that the disease might be caused by as many as 100 different genes, researchers reported March 15. "These findings certainly complicate the search for genes contributing to autism. These are rare changes, dispersed across the genome, and they tell us that autism may be the final common path for many different genetic abnormalities," said Dr. Thomas Insel, director of the National Institute for Mental Health, which helped fund the study. The small changes are not what people usually think of as genetic mutations but are called copy number variations -- extra copies or missing stretches of DNA. For the study, Dr Jonathan Sebat of the Cold Spring Harbor Laboratory in New York and colleagues across the United States, in Finland and in Britain looked at the DNA of people in 264 families. Read a similar story in Scientific American



Autism Cymru: Welsh researchers find genetic clues to autism

New research by researchers in Wales has found that anomalies in clock genes
which affect sleep, memory and timing may play a role in autism.


Fear centre 'shrinks' in autism
A part of the brain associated with emotional learning and fear shrinks in people with autism, researchers from the University of Wisconsin suggest in a study published in the Archives of General Psychiatry. Teenagers and young men with autism in the study who had the most severe social impairment were found to have smaller than normal amygdalae. The amygdalae may shrink due to chronic stress caused by social fear in childhood.


Ped Med: Autism tough to treat
More than 60 years after it was first identified, autism remains mystifying and stubbornly difficult to treat. Because the severity of symptoms and ostensible causes vary widely, there is no single best approach, specialists say. Rather, they recommend an individualized program, with a unique array of specific strategies, be designed for each child.


Growing number of autistics want to complete college education
 
The ever-increasing number of children diagnosed with autism spectrum disorders has spawned a new challenge: parents and autistic students want improved access to college. This story mentions the special supports provided by the West Virginia Autism Training Center at Marshall University in Huntington.


Students study autism success stories
Researchers from the University of Calgary, University of Manitoba and University of Saskatchewan are looking to shed some light on the often-misunderstood world of autism. The group of professors and students from the division of applied psychology are conducting a study that focuses on 100 youth aged 17-21 diagnosed with high-functioning autism, or Asperger's syndrome. The study is designed to look at the under-studied adolescent demographic and assess the positive aspects of these points in the autism spectrum.


Living With Autism: The Teenage View
New York Times review of MTV show "True Life: I Have Autism" featuring three teenagers with different degrees and symptoms of autism.

'Normal People Scare Me' screening to provide inside look at autism
A film about autism has been by a California teenager, Taylor Cross (18), who was diagnosed with autism at age 6. The film provides an inside look at what it's like to live with autism. For the full-length documentary that took two years to make. Cross interviewed 65 people for the film--children and adults with autism and their parents and siblings.


Uneven path into nightmare of autism
"Welcome to the nightmarish world of autism where nothing adds up, where the universe seems to be a fearsome bundle of noise that doesn't make sense."  Review by Robert Crew of the stage play "Lucy" --until April 14 at CanStage Berkeley Theatre, Toronto.


From the other side of autism: Memoir offers a glimpse of a rare world
Review by Amy Kroin of Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant, by Daniel Tammet (Free Press, 226 pp., illustrated, $24).

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ONTARIO
ISSUES

Helping Ontario's most vulnerable

An article in the Toronto Star (16 March 2007), that concludes: "Not so long ago, people with intellectual disabilities were hidden behind the walls of institutions. Today, thanks to serious flaws in the system, the situation is really no better. We need to, and can, do much better than that. The opportunity is here, and the time is now."


Important New Release from the Individualized Funding Coalition for Ontario
IFCO is pressing purposefully to persuade the Ontario Government to move ahead in implementing the new directions announced three years ago. Read the new IFCO Signature Paper Transformation of Developmental Services: Expanding the Possibilities for Citizenship
IFCO issues are vital for Ontario. Look up the many current resources on the IFCO website.
 

LONG-TERM CARE HOME ACCESS PROTOCOL
FOR ADULTS WITH A DEVELOPMENTAL DISABILITY

Disability advocates are very upset to learn that the Ontario Government (through the Ministries of Community and Social Services and Health and Long-Term Care) has made plans for adults with a developmental disability and relatively high needs to be admitted to long-term care facilities instead of opening community living opportunities for them. Advocates of inclusion and community living see a discrepancy between this new "access protocol" and the values and strategies discussed in the MCSS "transformation process" for developmental services since mid-2004.
See links to articles and letters on Family Alliance Ontario website


Families Matter Co-operative Inc.
Keep up with issues in Ontario developmental services through the website of this vigorous support organization in Ottawa. ..
for and about people with developmental disabilities... Please note current news items and monthly newsletters.

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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


February 15-March 30, 2007, in Etobicoke
Laser Eagles Gallery Show
Inclusiveness, artistic expression, and unique community partnerships come together in the Laser Eagles Exhibition, on display at the Arts Etobicoke Gallery February 15 to March 30, 2007.
The show features over 40 paintings by 11 artists who are members of The Laser Eagles Art Guild, an organization which provides creative opportunities to individuals whose bodies are limited in mobility and who do not communicate in typical ways.


Regional Support Associates
RSA (based in Woodstock) "provides services to adults with a developmental disability. The staff have clinical expertise and training in Psychology, Social Work, Sociology, Nursing, Speech Pathology, Behaviour Therapy, and Developmental Services. Services are offered to the individual, their families and agencies supporting them in their community."
Click for RSA Workshop Calendar, January to March 2007
Also check the website for the calendar for the coming year, till March 2008.

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

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March 21, in
Hamilton
Concurrent Disorders Family Forum
Afternoon for clinical staff, evening for families of clients with concurrent disorders.
Free bur registration required
Contact: Cheryl Vrkljan
Project Consultant,  Policy, Education & Health Promotion
Centre for Addiction and Mental Health
20 Hughson Street South, Suite 804
Hamilton, ON  L8N 2A1
Tel: (905) 525-1250 ext. 8156
Toll Free: 1-888-857-2876
Fax: 905-527-6957
cheryl_vrkljan@camh.net


March 23 – 25, 2007, in Toronto
ICE Canada Conference
Independence, Community and Empowerment: The Art of Managing Change
The only event of its kind in Canada, created by and for individuals who use Augmentative and Alternative Communication (AAC) and their families, to share ideas, learn from each other, and create new friendships.
Sponsored by the Ontario Federation for Cerebral Palsy (OFCP). For more information please click on title.


March 27,
7-9pm, in Waterloo
Amy Baskin on Keeping Strong, Sane and Connected
Amy is co-author of More than a Mom: Living a full and balanced life when your child has special needs (2006).
KidsAbility-Waterloo site. Attendance free but pre-registration required because of limited seating.
Click on title for full details


March 29, 2007, in London UK
Mental Health and People with Autistic Spectrum Disorders
Over recent years there has been a growing interest in autistic spectrum disorders. This conference will concentrate on the mental health issues, an area that is often neglected in other conferences. The day will offer an opportunity to hear from a number of experts in the field and will provide plenty of time for discussion.
People with autistic spectrum disorders are vulnerable to developing mental health problems and the conference will explore issues of assessment, intervention and service delivery. People with autistic spectrum disorders span the range of intellectual functioning and some groups may fall between services, the issue will also be discussed.
Click on title for details


Thursday March 29, 2007
, 1-3 pm, in Toronto
Seminar Series on Community Based Research
Audrey King, Hazel Self and Karen Yoshida on
Consumer Participation: The Value of Relationship in Teaching and Research
Location: School of Disability Studies, Ryerson University, 99 Gerrard St. E,5th floor, SHE 560
Click on series title for more.  To Register:  e-mail mcnabbn@mcmaster.ca
This FREE seminar series is for you if you believe in the value of collaborative research and want to learn more from people doing it.  You will find this seminar of value if you are interested in:
  • learning from others who have worked to develop a genuine partnership between academia and community
  • are interested in learning more about ways that consumers/people with disabilities can collaborate with educators and researchers


March 29 & 30, 2007, in Ottawa

Autism Awareness Centre Inc. presents two workshops
CAROL KRANOWITZ: Functional Fun for the Out-of-Sync Child
KARI DUNN BURON: Understanding Social Cognition and Its Impact On Autism Spectrum Disorders
Click for full information and how to register
Visit the AAC website



Tuesday, April 3, 2007, 5-8 pm, at St Mary's High School, Kitchener
Community Connections in Waterloo Region
Information for persons with disabilities, families, professionals and caregivers.
Announcement also includes links for online guide to resources.


April 10, 7-9pm, in Guelph
Amy Baskin on Keeping Strong, Sane and Connected
Amy is co-author of More than a Mom: Living a full and balanced life when your child has special needs (2006).

KidsAbility sponsored--at Ignatius-Orchard Park
Attendance free but pre-registration required because of limited seating.
Click on title for full details


April 25, at 7pm, in Kitchener
Magnificent Moms: Amy Baskin on Keeping Strong, Sane and Connected
Kitchener Public Library
Please click on title for more


May 10, in London Ontario
Autism Ontario London Chapter presents
Temple Grandin at Centennial Hall, London
Click on link to reach information about admission prices.

May 23 – 27, 2007, Sheraton Centre Toronto

2nd International Come To Your Senses Conference

Opening the Sensory World to Children & Adults with Complex Disabilities

By MukiBaum Treatment Centres

Registration is now at http://www.sensoryconference.ca/ and you can take advantage of Early Bird rates.  There will be opportunities for you and your organization to exhibit, become a sponsor of the event and participate in a number of activities throughout the conference.



June 15 & 16, 2007

2007 Autism Spectrum Disorders Conference
Acceptance and Opportunities: See the Potential

A conference that will explore best practices and approaches for increasing quality of life, opportunities and independence. Save the Date! Friday, June 15 & Saturday, June 16, 2007 Toronto, Ontario
Member and Early Bird Registration discounts are available.
Keep an eye on www.autismontario.com for more information to be released in the coming months.


31 August, 1 & 2 September 2007, in Oslo, Norway
‘A WORLD OF POSSIBILITIES’
8th International Congress Autism Europe
Abstract submission, registration and further Congress information:
http://www.autismcongressoslo.org

E-mail: president@autismeurope.org
Do not miss this opportunity to contribute to take part in ‘a World of Possibilities’ for people with autism and their families, view the 4th International Art Exhibition of Persons with Autism, and to visit Oslo and its charming surroundings.

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BOOKS, WEBSITES AND OTHER RESOURCES

"Special Needs" Planning Group offers Tax Tips - 2006 Taxation Year
Graeme Treeby of The Special Needs Planning Group has teamed up with Doug Cronin C.G.A., Community Living York South and The Ontario Federation for Cerebral Palsy to prepare and distribute a free tax information guide for people with disabilities and their families. The purpose of this guide is threefold:
1. To introduce people to the Disability Amount, Caregiver Amount and the T2201 Disability Tax Credit Certificate used to secure them. 
2. To share a FREE Process to Get Back Taxes That Should Never Have Paid in the first place and that people can now get back through the FREE Re-File Program.
3. To highlight many of the Tax Deductions, Credits and Benefits that are available to people with disabilities and their families.
Click on title to read whole guide.


Autism: It's Not Just in the Head
The devastating derangements of autism also show up in the gut and in the immune system. That unexpected discovery is sparking new treatments that target the body in addition to the brain. By Jill Neimark for Discover Magazine. This report comes from Discover Magazine, April 2007 edition, now on the news stands. It is not available yet online. To learn more about magazine's availability, please click on title.


Facilitating Transition to Adulthood for Youth with Disabilities

A published article by Kerry Wynn, Debra Stewart, Mary Law, Jan Burke-Gaffney, and Therese Moning describes a community capacity-building (CCB) approach to assisting transition to adulthood for families and youth with developmental disabilities. A pilot project using this approach in one community in Ontario is described with “lessons learned” for future projects.
Wynn, K., Stewart, D., Law, M., Burke-Gaffney, J., & Moning, T. (2006). Creating connections: A community capacity-building project with parents and youth with disabilities in transition to adulthood. Physical & Occupational Therapy in Pediatrics , 26, 89-103. Published by The Haworth Press, Inc.
Link to text of paper in pdf


Interesting Models and Resources on
the New Website
of the National Autistic Society (UK)


High-functioning autistic spectrum conditions and adult life

Adults with high-functioning autism and Asperger syndrome, and their parents and carers, are invited to complete an online questionnaire. This is intended only for adults in the UK, but the survey is interesting for others to peruse. CLick on title.

Questionnaire on autism interventions

Difficulty finding high quality information about autism interventions? The charity Research Autism is running a survey to hear about your experiences. Again, an interesting model for others outside the UK. Click on title. The National Autistic Society (NAS) has launched a new web resource, Signpost, tailored specifically for people with autism, their parents and carers. The site is aimed at providing people with autism with vital information that could change their lives. The resource was developed after research published by the NAS underlined the need for greater information and support to be made available to parents and carers. For example, the charity has found that 36% of carers do not understand the benefits system, or know what benefits they are entitled to. Over half of carers were unaware that they were entitled to a carer's assessment from their social services department, and 45% of parents said they did not receive adequate support or information to choose a school. Furthermore, only 38% of people with an autistic spectrum disorder have had a community care assessment, and only 16% were offered this without specifically requesting it. "Autism is a spectrum disorder that affects different people in different ways,” said Benet Middleton, NAS Director of Communications. “This means that finding the appropriate support for each individual, in their local area, can be a real minefield.” She added that it is vital that people with autism and their families are aware of their entitlements so they can access services, benefits and support that could ease some of the pressure on their lives. Signpost was designed to point people in the right direction.
The new Signpost system matches data specifically to each person, taking into account their age, diagnosis, gender and location. It gives detailed information on how autism may be affecting that particular person, their rights and the benefits that they may be entitled to. Relevant services and sources of support are also highlighted, tailored to the user's location anywhere in the UK.


Autistic Spectrum Disorder Action Plan for Wales
Autism Cymru: Come and have your say on the future of services for people with autism in Wales
Another possible model for planning autism services and supports.

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FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING PERCEPTIONS AND 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.

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Shinsuke Inoue of Tokyo writes to us:
"I'm a freelance private researcher about autism. I also was diagnosed as Asperger syndrome last year. I would like to introduce my original autism theory "The Analog-Dominance-Brain Theory of Autism". Most of articles are written in Japanese, but only the summary of theory is written in English. http://submariner-spirit.cocolog-nifty.com/blog/2007/02/the_analog_domi.html

"I'm using my pen name "Ryu Terayama" on this blog. I'm discussing about this theory with professor Simon Baron-Cohen of Cambridge university ARC (Autism Research Centre) and he told me it quite correspond to some of their ideas. As I am a freelance, I'm looking for some position for researching. If you have or you know some opening please let me know."
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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.