ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

OAARSN offers a rich 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

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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.

Please note that this service is for information and awareness. We cannot endorse or be held responsible for the validity of any information or the value of any therapy or service. Nor do we necessarily agree with opinions that may be expressed.


Celebrating Six Years of OAARSN

The Ontario Adult Autism Research & Support Network was launched in March 2000, when autism had a tiny presence on the Internet. Our early news bulletins included items about autism in children. Autism in adults was hardly ever considered in other media. We still have a long way to go before adults with autism, in Ontario and elsewhere, have better lives.

There has been a huge expansion in autism awareness through the Internet in the past six years. In March 2000, we used the Dogpile search engine to find nearly 300,000 pages on the World Wide Web that mentioned the keyword "autism." A Google search in March 2006 produces 63 times that number. Adult autism resources were very scarce in March 2000, but a search for "adult autism" now turns up 22,000 references, with 10,000 for “autistic adults”. Autism issues in Canada were scarcely reflected on the web five years ago. A search for "autism spectrum disorders" and “Canada” in March 2006 finds more than 134,000 hits. There are even 443 hits that combine the keywords “adults” and “Canada” with the phrase "autism spectrum disorders" and do not include “children”.

Read about why OAARSN was started and the tasks still ahead

Visit OAARSN's website and keep in touch through the OAARSN Listserv (send a message requesting to join to gbloomfi@uoguelph.ca).

 


OAARSN NEWS BULLETIN
 
1 April 2006


April marks the 35th Anniversary of National Autism Awareness Month (in US).

Asperger’s explained: April is Autism Awareness Month
Austrian pediatrician Hans Asperger first met his 6-year-old patient in 1939. "A highly unusual boy who shows a very severe impairment in social integration...and certain stereotypic movements and habits," he wrote. The content of the child’s speech was far beyond his years. And though he talked like an adult, he would seldom answer a question. Asperger’s observations, along with the parallel findings of Johns Hopkins pediatrician Leo Kanner, gave a name to what we now call autism spectrum disorders (ASD).


In Ontario, it is Toonies for Autism month.
Visit the new Toonies for Autism website


Plans are also being made by
the National Alliance for Autism Research (NAAR) Canada and Autism Speaks for:
The 2nd Annual Walk for Autism Research
on Sunday, May 14, 2006, in Toronto
See more below, under Announcements

Asperger achievers - your stories
Stories from the National Autism Society website (UK)


David Cohen, Music Lover and Activist
Globe and Mail obituary celebrating the life of David Cohen (1944-2006), described as possibly an autistic savant and the Vancouver Symphony's No. 1 fan. David's last years also illustrate the power and love of his personal support network developed by Planned Lifetime Advocacy Network. A moving tribute to David was also aired on The National on Tuesday, March 14.


Stephen Wiltshire, MBE
Stephen Wiltshire, 31, has autism. His work came to public attention in the TV documentary The Foolish Wise Ones.
"The one young British artist whose prodigious talent could just prove longer lasting as well as more accessible to millions is 31-year-old Stephen Wiltshire, who has been recognised for his services to art with an MBE in the New Years Honours List..." 
"Stephen Wiltshire's speciality is intricate and fantastically detailed drawings of buildings and cityscapes, which has earned him a large following, packed out exhibitions and led to bestselling books. He is not just a remarkable artist. A piano player for 10 years, Wiltshire also has a pitch-perfect voiceand sings everything from opera to Elvis."  For more, visit Stephen's website

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GENERAL AUTISM NEWS

Major research news story
The role of evolutionary genomics in the development of autism  
Scientists at the London School of Economics, UK and Simon Fraser University, Canada have described the first hypothesis grounded in evolutionary genomics explaining the development of autism.

In an article to be published in a forthcoming issue of Journal of Evolutionary Biology, Dr Christopher Badcock and Professor Bernard Crespi explore the ‘imprinted brain hypothesis’ to explain the cause and effect of autism and autistic syndromes such as Asperger’s syndrome, highlighted by the book The Curious Incident of the Dog in the Night-Time, which involves selective disruption of social behaviour that makes individuals more self-focussed whilst enhancing skills related to mechanistic cognition.

The ‘imprinted brain hypothesis’ suggests that competition between maternally and paternally expressed genes leads to conflicts within the autistic individual which could result in an imbalance in the brain’s development. This is supported by the fact that there is known to be a strong genomic imprinting component to the genetic and developmental mechanisms of autism and autistic syndromes.

Professor Bernard Crespi from Simon Fraser University, Canada explains: “The imprinted brain hypothesis underscores the viewpoint that the autism spectrum represents human cognitive diversity rather than simply disorder or disability. Indeed, individuals at the highest-functioning end of this spectrum may have driven the development of science, engineering and the arts through mechanistic brilliance coupled with perseverant obsession.”

The core behavioural features of autism such as self-focussed behaviour, altered social interactions and language and enhanced spatial and mechanistic cognition and abilities – as well as the degree to which the brain functions and structures are altered – also supports this hypothesis.

Read the article in the Journal of Evolutionary Biology



Autism Phenome Project Aims To Redefine Autism By Identifying Distinct Subtypes
"Multidisciplinary teams of physicians and scientists at the University of California, Davis, M.I.N.D. Institute have launched the nation's most comprehensive assessment of children with autism to detect the biological and behavioral patterns that define subtypes of the disorder. Called the Autism Phenome Project, the large-scale, longitudinal study will enroll 1,800 children -- 900 with autism, 450 with developmental delay and 450 who are typically developing -- who will undergo a thorough medical evaluation in addition to systematic analyses of their immune systems, brain structures and functions, genetics, environmental exposures and blood proteins. Children will be 2 to 4 years old when they begin participating in the study, and their development will continue to be evaluated over the course of several years."


Seizure Disorder in Amish Children Points to Autism
"A study of Old Order Amish children has identified the genetic mutation that causes a previously unknown disorder, with seizures that progress to autism and retardation." Read another report

Pupils 'must look away to think'

"Pupils should be encouraged to look away from their teacher when answering a question, scientists have found. Far from daydreaming, children who avert their gaze when considering their response to a question are more likely to come up with the correct answer. Stirling University psychologists found that, when looking away, five-year-olds answered 72% of questions well. But when children had not been instructed to look away when thinking, they answered just 50% correctly. The researchers believe teachers and parents often mistake 'gaze aversion' for children failing to understand a question and do not give them enough time to compose an answer. 'The mistake adults make is to interject too quickly, they need to try and hold back,' said Dr Doherty-Sneddon.


Device warns you if you're boring or irritating
"A device that can pick up on people's emotions is being developed [by the MIT] to help people with autism relate to those around them. It will alert its autistic user if the person they are talking to starts showing signs of getting bored or annoyed. One of the problems facing people with autism is an inability to pick up on social cues....."
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SPECIAL ISSUES IN ONTARIO


2006 ONTARIO BUDGET: Backgrounder

Media coverage of the Ontario budget made little if any reference to these provisions;
STRENGTHENING ASSISTANCE FOR ONTARIO'S MOST VULNERABLE
Specific categories…
Providing Opportunity For Those Who Need It Most
At-Risk Youth
Adults and Families
Improved Support for Social Assistance Recipients
Transition from Social Assistance to Employment
Developmental Services and Other Supports for the Vulnerable
Affordable Housing
Link to full budget document


Should Personal Support Workers Be Regulated?
By Lana Kerzner, Staff Lawyer for ARCH
  •    What is a personal support worker (“PSW”)?
  •    How can we be assured that PSWs provide high quality service in a way that is accessible to all members of the public and is free from abuse?
These are some of the important issues which are being addressed in an ongoing consultation.  It is being conducted by the Health Professions Regulatory Advisory Council (“HPRAC”), which is a body that gives advice to the Minister of Health and Long-Term Care about the regulation of health professions in Ontario.  In doing so HPRAC seeks input from a variety of sources, including the public.

Many persons with disabilities receive services from PSWs.  And for some, PSWs provide essential and intimate services on a daily basis.  Ensuring that persons with disabilities receive a high quality of services in a way that promotes their dignity and autonomy is essential.  As such, it is crucial that the opinions and perspectives of persons with disabilities be reflected in the HPRAC’s current initiative relating to the regulation of PSWs.


In February 2005, HPRAC received a referral from the Minister of Health and Long-Term Care regarding PSWs.  Specifically, HPRAC was asked to review the types of work that PSWs do.  HPRAC was asked to make recommendations on whether all or some aspects of the work of PSWs “should be considered for regulation under the Regulated Health Professions Act.” (“RHPA”)  The RHPA provides a framework for regulating health professions in
Ontario and addresses issues of public protection.

There is currently no single definition or meaning of the term PSW.  Different PSWs may do very different work.  However, PSWs often provide support with activities of daily living, such as bathing, feeding and dressing.  They may also provide other services, such as measuring blood pressure and administering medications.  They work in a variety of places, such as in people’s own homes, group homes and hospitals.

Click on title to read the full paper


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 .... " 
Click for more details of this opportunity


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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


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



April 2, 2006, 2-4pm in Guelph
What Does Waterloo-Wellington Region Most Need For Adults with Autism Spectrum Disorders?
Discussion of priorities for adults with ASD, as a basis for advocacy and policy, with opportunities to share concerns and bright ideas with other family members and friends in our region.
RSVP by March 29 to phone (519) 823-9232 or email gbloomfi@uoguelph.ca



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

Wednesday, April 5, 2006, 4-6pm, at North York Civic Center Council Chambers 
Creating Housing Choices for People With Developmental Disabilities
A Workshop for Family Members To Explore Alternative Residential Housing Models
5100 Yonge St. Lower Level (Mel Lastman Square)
This workshop will involve two presentations and be introduced by Toronto Councillor Joe Mihevc,
Chair of the City's Disability Issues Committee. Includes Estate Planning for Creative Housing Models. "This Workshop is funded by the Ontario Ministry of Community and Social Services. If you are interested in attending or would like more information, contact the Developmental Services agency with whom you have a connection. Family registration is not required."


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. Click for general information about Shirley's OT practice


April 24, 25, 26, 2006, in Niagara Falls

Autism Spectrum Disorders 2nd Annual Provincial Conference
Where Knowledge Takes Flight
Sheraton Fallsview Hotel and Conference Centre
Click on title for program and registration information.




April 27, 2006, 2-8pm, in Milton
Halton Showcase 2006: A Resource Fair for People with Disabilities
Find answers to these questions and others:
I want a job!  What options are  available  in my community?
Where do I find recreation programs ?
Living options:  supportive/Independent ?
How do I access services and supports ?
Click for more details



April 29, 2006, in London

Sexuality and Social Strategies for Children with Autism Spectrum Disorder
Susan Johnston, Behaviour Resource Facilitator.
Susan is a behaviour specialist and member of the Peel District School Board's multi-disciplinary ASD team. She is also a certified Crisis Prevention Intervention Instructor responsible for training and certifying Peel District School Board staff in the area of positive physical intervention when working the individuals with Autism. Click for flyer  For Registration Information Contact: Marianne Knox 519 352 7945
marianneknox@sympatico.ca


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.
For more information and to register online
, check the Family Alliance Ontario website.



Sunday, May 14, 2006, in Toronto at Mel Lastman Square
The National Alliance for Autism Research (NAAR) Canada and Autism Speaks present
The 2nd Annual Walk for Autism Research
More information can be obtained at http://canada.autismwalk.org or by calling 1-888-362-6227.


May 8, 2006, evening, in Brampton

Creative Housing and Support Options for Adults with ASD
Workshop offered by Kerry's Place Autism Services, with Bruce Kappel, Jim Preston, Glenn Rampton and Gail Jones. Click on title for details


May 12-14, 2006 (weekend) in Lanark County
Another Way of Being
Susan Barker offers a weekend retreat for parents of children with learning disabilities.
For more information, please click on title for more, and visit the
ontrackoptions website.


May 15-16, 2006, 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 program and to register
Please keep checking for updates.



May 24-28, 2006, in Chicago
Autism One 2006 Conference
Chicago Westin O'Hare Hotel
”The most comprehensive conference on autism ever assembled…
bringing together over 120 of the world's leading authorities.”

Five tracks to help you make the best decisions and most informed choices.
1. The Science of Autism & Biomedical Treatments
2. Behavior / Education / Communication Therapies

3. Complementary and Alternative Medicine
4. Adolescence and Adulthood

5. Government/Legal/Personal Issues
”We are pleased this year to be adding a track to specifically address adolescence and adulthood."
Click on title for more and to register.



SPECIAL EARLY ANNOUNCEMENTS

Monday 18 September 2006, in Cambridge UK

The Autism Research Centre (ARC) at the University of Cambridge announces its

First Autism Research Conference at West Road Concert Hall, Cambridge.

Features include keynote speakers, poster presentations and an autism publishers' fair. 

Calling all artists and musicians. As part of the conference, there will also be a music concert and an exhibition of art by people on the autistic spectrum, taking place on Sunday 17 September 2006 at the same venue. Artwork will be auctioned on the day and proceeds will be divided equally between the artists and autism research. Profits from the concert will also be donated to autism research. The ARC is calling for artists and musicians who would like to get involved in the celebrations and perform or exhibit on the day. They welcome applications from people with autism spectrum conditions (or their carers on their behalf) who would like to be considered as performers in the concert, or have their artwork exhibited. For further information about the conference, art exhibition and concert visit: www.arc-conference.com



October 25, 26, 27, 2006, in Metro
Toronto Convention Centre

Autism 2006 - Geneva Centre for Autism International Symposium

Complete program now available on our website.

Go to www.autism.net now to view this year's exciting conference program
including speakers from around the world.

The comprehensive agenda includes presentations on the latest intervention and research in autism and neurology, biomedical interventions, positive behavioural intervention, communication, social skills, sensory processing disorders, anger management, adolescents, adults/employment, first hand accounts, Aspergerís disorder, cognitive behaviour therapy, intensive behavioural intervention, OCD and much more. 

Don't miss this international exhibit hall, art gallery and remarkable opening ceremony featuring the talents of gifted individuals with ASD.


30 October-November 2, 2006, in Cape Town, South Africa
World Congress on Autism "Autism Safari - Exploring New Territories"
Please keep visiting website for updates


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BOOKS, WEBSITES AND OTHER RESOURCES

Evidence of Harm: Mercury in Vaccines and the Autism Epidemic -
A Medical Controversy by David Kirby
.

"Evidence of Harm" Wins 2005 Investigative Reporters and Editors Award for Outstanding Investigative Reporting in a Book. EOH is also a finalist for the NY Public Library Book Award for Excellence in Journalism. The winner of that award will be announced May 10 at a special luncheon at the NY Public Library. Read more
Judges' comments: “Autism, rare in the past, is exploding in the
United States, where it is now found in one in 166 children. Attention-deficit disorder also has skyrocketed. And 1 in 6 children today has a learning disability. David Kirby investigated whether one of the causes of these childhood afflictions is thimerisol, a vaccine preservative that contains mercury, a well-documented neurotoxin. In the 1990s, the mercury-containing additive was injected into children far in excess of federal safety levels.
”Kirby told the story of stonewalling, denial and cover-up by federal regulators, medical groups and the pharmaceutical industry. And he documents covert efforts by some of those same powerful forces - along with the U.S. Congress - to grant blanket immunity for drug companies that put mercury in vaccines. Like so many scientific controversies involving complex science and big business, the topic is controversial. Kirby's careful and meticulous reporting is exemplary in its balance, accuracy and documentation.”


Kitchener Public Library's Autism Collection
Kitchener Public Library established an Autism Collection in 1993, 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.


Carly Hatton of Guelph and her art
"Since Carly is now a teenager we have updated her website with a little more mature look and we have added many new paintings for your viewing. Just click on www.CarlysArt.com.  If you like it please forward to your family of friends.  Thanks from Carly's grandmother Ruth"


Walking the Path, Becoming “Remarkably Able”: Identifying gifts, interests, and talents in individuals with ASD and others who are differently ABLED
Free Online Newsletter by Jackie Marquette, Parent, Author, Educator, Researcher, March 2006
Jackie@independencebound.com
www.independencebound.com
This FREE online newsletter is for ALL who are involved and concerned about creating new opportunities that encourage the personal expression revealed in interests, gifts, and talents for the adolescent/young adult with ASD and/or other disabilities.

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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


"GO BE AUTISTIC SOMEWHERE ELSE THEN!"

I am an autistic adult living in a large Ontario city and use a wheelchair.

Being autistic means that I have many sensory differences, as well as social skill difficulties. Thus, when I am out in public I wear headphones all the time, in order to deal with the busy world.  Otherwise would not be able to leave the house at all.

Friday March 17th, 2006 after a long workout at the YMCA, decided to go to a store where have gone for YEARS to get magazines. In fact it has been the only place I ever buy magazines (autistics are creatures of habit). I buy Adbusters,  ShambalaSun, and some Yoga magazines once a month and when can afford them.

This time was actually also looking to see what kind of running/triathlon/marathon magazines they had, since am training for a marathon and during my training period, I have entered many local races to raise funds for several non-profit organizations locally. I will be pushing my wheelchair through four separate 5KM courses between May 2006 and July 2006 here in
Sudbury to raise funds for our local charities..

I did NOT touch any magazines, I had NO TIME to, before the 'problem' started.

When went in there, turned to the left (where the Buddhist and yoga magazines are) and sat in my wheelchair listening to my walkman (which is what I ALWAYS do, in EVERY store that have gone in alone... am terrified of having the workers at stores talk to me, so the walkman drowns them out, and they eventually notice the walkman and realize am listening to music and leave me alone).

Well, very soon after entering (within one minute) the man behind the counter was yelling the following words at me:
"I said HELLO to you and I EXPECT my customers to SHOW PROPER SOCIAL POLITENESS and say HELLO back".

I started to cry.
I said I have my walkman on because i want to drown out the voices of people, because I am autistic. Talking to strangers sends me into a panic and then I need to leave the store.

The man continued and said - well HERE in OUR STORE we EXPECT people to BE SOCIALLY POLITE and you have to say hello back.

I said I am autistic and I have difficulty talking to strangers and that I fear this means I cannot shop here if I have to talk to strangers, all the while my anxiety increasing as I needed to try to explain this to the man behind the counter, with the hopes that if I was able to help him understand my disability, he would let me shop there.

To which he replied: "FINE.  GO BE AUTISTIC SOMEWHERE ELSE THEN!"


Now, I fear that I cannot get the magazines that i want, because to go to Chapters, I would need a separate HandiTransit ride booked just for that, and it would add $4 to the cost of my magazines. The magazine store was easily accessible from the YMCA where I am already three days a week.

Furthermore, have always believed in supporting local independent shops, rather the big 'box stores' like Chapters.
 
This leaves me feeling very much like I could be making a complaint to the Human Rights Commission about the fact that the store will not serve autistics and tells us to "go be autistic somewhere else", (which IS a violation of the Human Rights Code under discrimination due to a disability).

Now I realize that my magazine purchasing days are over, and am going to have to settle for reading things online only. Am very sad about this incident, considering I have been a loyal customer of XXXX for a decade (since 1996) and this has never happened to me there before.  I do not understand why they changed their policy and expect those of us with communication and sensory disabilities such as autism to “go be autistic somewhere else” merely because we do not know how to be socially polite enough to talk to strangers.

PS: When this experience was related online in the large Ontario city, there was an immediate response in a kind gift of magazine subscriptions. But not from the magazine store. We still have a long way to go before people who are different and vulnerable are regarded and treated with respect!
 


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