ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

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OAARSN NEWS BULLETIN
 
1 August 2005


ONTARIO NEWS

Families Matter Co-operative Inc.
Families Matter Co-operative of Ottawa announces its incorporation and readiness to welcome new members.
Its first meeting will be on September 27.
Click for overview, key messages and membership application form etc
The Co-op's First Directors are:
Marge McCabe, President
Krysia Pazdzior, Vice-president
John Toft, Secretary
Anne Toft, Treasurer
Audrey Bufton, Director at large.


The art of overcoming; These painters - and their teacher - don't let disabilities get in the way of self-expression  Article in Hamilton Spectator, July 25, 2005
A profile of one of the artists begins:
"Richard Malik used to have a hard time focusing on the world around him. Now, he spends hours painting his surroundings. Malik has autism, a developmental disorder that typically affects a persons' ability to communicate, form relationships and respond appropriately to his environment. As a young child, he was extremely introverted -- he rarely spoke and didn't make eye contact. That is, until he found art at the age of five. 'It was a way to express himself," says Carol Malik, his mother. "It gave him a new awareness, a connection to what's around him.'
"Malik, now 31, has come a long way. His paintings have been featured in five art shows, two of which took place at the International Symposium of Autism in Toronto. He also sells Christmas cards featuring his artwork. Malik, who grew up in Burlington, now lives in Toronto....."
Visit Richard's website


Families for a Secure Future

invites applications for part-time Facilitator positions in Durham Region and Wellington County.
If you are interested, contact Judith McGill
 

Announcing ACES
Guelph Services for the Autistic and Waterloo-Wellington Autism Services are working towards our shared goals of good lives for our friends who are adults or older teens. During the past year, we have co-operated in encouraging ideas of an intentional community in our region. Last November, we held two workshop events, both facilitated professionally, to develop a vision, mission and sense of shared purpose. We decided not to rush out and buy a large property--even if we could afford to! Instead we are taking several small steps, to prove that we can work together constructively and that our young people can feel fulfilled and purposeful in various kinds of land-based activities. We are also developing a function as a centre of autism awareness, resources and expertise. See announcement sof forthcoming workshops on August 17 and September 14. We have adopted a name for our vision and current activities, and a logo.
Read more about ACES

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GENERAL AUTISM NEWS


The Curious Incident of the Dog in the Night-Time

Mark Haddon's novel is the book all 3,600 freshmen at University of South Carolina will read and discuss this fall. They will hear from Mary Meghan Martin, 20, a second-semester junior from Bothell, Wash., who is majoring in biology. Mary Martin's younger sister and two cousins are autistic, as is the narrator of Haddon's novel. Reader’s Discussion Guide: Mark Haddon’s novel

The book is also on some summer reading lists for high school students in the US. But one parent in Wellesley MA has gone on record as opposed to obscene language in the book. Read this story


Autism "Epidemic?": A Medscape Newsmaker Interview With Two Scientists
Despite heightened media attention on the autism "epidemic," a report published in the July issue of Current Directions in Psychological Science offers three arguments against a true increase in autism prevalence. These include changes in diagnostic criteria for autism, with current criteria being more inclusive than when the diagnosis was first defined in the 1940s; methodological flaws in an unpublished California study widely cited as showing dramatically increased prevalence; and problems in using the U.S. Department of Education's annual "child count" data.
To find out more about this issue and its clinical implications, Medscape's Laurie Barclay interviewed lead author Morton Ann Gernsbacher, PhD, a Vilas Research Professor, the Sir Frederic Bartlett Professor at the University of Wisconsin-Madison, and President-Elect of the American Psychological Society.
For an alternate viewpoint, Dr. Barclay also interviewed Craig J. Newschaffer, PhD, an associate professor of epidemiology at the Center for Autism and Developmental Disabilities, Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland. Dr. Newschaffer is lead author of a study using cohort curves to suggest that autism prevalence has been increasing with time, as reported in the March issue of Pediatrics.


'Gene test' for autism in sight

Scientists who have discovered a gene linked to autism believe they can use the new knowledge to work out an individual's risk of the condition. The French team from IntegraGen SA hope to have a working risk assessment test on the market by the end of 2006. Experts said the Molecular Psychiatry study was promising but that it was premature to talk about an autism test.
The gene sits on chromosome 16 and holds the DNA code for a protein that plays a central role in brain function. The French authors looked at 116 families where at least one member had autism. By analysing the DNA from these individuals they found a region on chromosome 16 - PRKCB1 - appeared to be linked with autism. PRKCB1 is expressed in granule cells in the cerebellum of the brain. Its associated protein is involved in transmitting signals from the granule cells to the Purkinje cells. Both these cells help relay messages in and out of the brain.



University of Kentucky chemist tilts at autism's origins
Profile of Boyd Haley, until recently chairman of UK's chemistry department, and a leader in a nationwide effort to tie the vaccinations that were required for millions of American children to a rapid increase in the number of youngsters being diagnosed with autism.


Autism in France - Special Event On Autism One Radio

Tuesday, August 2nd, beginning at 2:00 pm ET: www.autismone.org/radio
Martine Ferguson, President and Co-founder of the Fondation Autisme based in Paris, France.
Fondation Autisme has a mission of helping towards research to: find the causes of, foster the prevention of, and further the efficient and effective treatment of autism. Fondation Autisme wants to provide affected children and their families in France the hope for a future rich in opportunities by improving their world, from school to the professional world.
Mamans in France are still treated as "refrigerator mothers," and young children are recommended for institutionalization.
Host Teri Small will interview Martine Ferguson on such topics as: How Fondation Autisme hopes to work in harmony with Cure Autism Now on the Autism Genetic Resource Exchange; how the media in France is embracing the possibility of autism research with excitement; and how Martine Ferguson would like to make information available to parents in France concerning Thimerosal.



Disability wait list vexes parents
For parents of young adults aging out of special education systems, that rite of passage can be terrifying. Without the structure and supervision that school provides, their sons and daughters can be left to their own devices. A story from Utah, where the Human Services Director is asking the Legislature for more flexibility to spread her $163 million disabled budget to more families, even if it means offering limited aid in the form of adult day care or job coaches.

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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


Wednesday, August 17 from 7pm, in Guelph

Workshop with Graeme Treeby of the Special Needs Planning Group
Key question: "How can families plan and act now so that the most resources possible are available to support the good life of our daughter/son after we can no longer do this personally?"
Likely to interest people in Guelph-Wellington, Waterloo Region and surrounding places. Offered free by Guelph Services for the Autistic, but space is limited. Please pre-register now, requesting an invitation and more information. Please send a message to Nancy Cherry <nancy.cherry@sympatico.ca>

The "Special Needs" Planning Group is made up of parents of people with disabilities.

Our focus is to assist families in preparing financial and estate plans that will ensure that their sons or daughters with a disability will enjoy a decent quality of life now and in the future. Our plans make use of Henson Trusts, Wills, Funding Mechanisms like family estates and life insurance programs and Life Plans which are designed to provide for our children after we are gone without affecting entitlement to ODSP benefits.
The SNPG does not charge any fees for our services, which means that everyone can take advantage of our knowledge and expertise no matter what their financial situation.  For further information, please visit our web based resource materials at  www.specialneedsplanning.ca


Sunday, August 28, registration from
7am
Cambridge Chapter of Autism Society Ontario announces its
Second annual golf tournament in support of individuals with autism and their families

Grand Valley Golf & Country Club, 1910 Roseville Rd, RR#2, Cambridge ON N1R 5S3, (519) 623-8811
Fee of $75 per person includes 18 holes of golf, a power cart, buffet luncheon and $20 charitable tax receipt. Please make cheque payable to “Autism Society Ontario–Cambridge Chapter” and mail to 160 Hespeler Road Cambridge, ON N1R 6V7 no later than Friday, August 5, 2005.  We are limited to 144 golfers so please register early. For more information: Stacey at (519) 653-8056 thezoo@rogers.com


September 7 - 8, 2005
, 9am-4pm, Mississauga Convention Center
R.D.I. WORKSHOP "Going to the Heart of Autism"
Introduction to the RDI™ Program (CEU's Available).
Early Bird Registration deadline:
July 22, 2005. http://www.rdiconnect.com/workshops/TorontoCA/
Going to the Heart of Autism:
Remediating Autism through Relationships
Opening Doors to Reciprocal Communication,
Genuine Friendships, & School & Workplace Success

Overview: Based on the latest scientific research, discover how people with Autism, Aspergers and PDD can learn to communicate reciprocally, be genuinely interested in others, and not just tolerate, but enjoy change, transition and going with the flow.
The RDI™ Program is a parent-based, clinical treatment program designed to address the core deficits of autism which impact social communication, relationship building, motivation, critical thinking, abstract language comprehension, problem-solving and executive functioning.
Register online for the workshop:   
http://www.rdiconnect.com/workshops/TorontoCA/ or email: Kristin Adiska at adiska@rdiconnect.com or call toll-free: 1-866-378-6405, ext 119, for more information. Group discounts available.
Visit our web site: http://www.rdiconnect.com/
Steven E Gutstein, Ph.D.SteveGutstein@rdiconnect.com


Wednesday, September 14 from 7pm, in Guelph
Workshop with John Lord on Making Citizenship a Reality
The Role of Person-Directed Planning and Individualized Funding
A WORKSHOP FOR PEOPLE WHO WANT TO MAKE IT HAPPEN
In recent years, citizenship has become a goal for people with disabilities. To be a citizen means to experience self-determination and community. This workshop is designed for people who want to build a good life and community connections with a vulnerable person. With individualized funding growing in importance, the role of facilitation and the importance of building a support plan will also be explored.
Workshop leader is John Lord, who was the keynote speaker at the recent Guelph Conference on Creative Supports. This workshop will build on his speech at that event and give people ample opportunity to ask questions, and work with others on issues of common concern.
John Lord is a researcher, consultant, and parent from Kitchener-Waterloo. Some of John's recent publications on individualized funding can be viewed at www.individualizedfunding.ca

Likely to interest people in Guelph-Wellington, Waterloo Region and surrounding places. The workshop is offered free, but space is limited. Please pre-register now, requesting an invitation and more information. Please send a message to Nancy Cherry <nancy.cherry@sympatico.ca>


September 16 - 18th, 2005

MiniDAN! (Defeat Autism Now!)
Biomedical Treatments for Autism
2-day Parent and Practitioner workshop featuring
Dr Elizabeth Mumper, Dr Nancy O'Hara, Maureen McDonnell RN.
Guest Speaker - Dr Andrew Wakefield
Holiday Inn Select Airport, Toronto, Canada
visit www.autismcanada.org or www.danconference.com for more information 



Thursday September 22, 2005, in North York
Official launch of Revel in the Light”
The story of Rebecca Beayni, produced by Masterworks Productions
Click for more information about premiere
Click for order form (either video or DVD)
For more about Rebecca's remarkable effect on others, read Rebecca is going to the United Nations Helen Henderson highlighted Rebecca's story around her video in her column in the Life Section of the Toronto Star on Saturday July 2.

Monday, September 26, 2005, 1-4pm, in Waterloo
Moving Beyond the “Circle of Friends”:  A New Approach to Inclusion
by Shawna Bailey, B.A. (Psyc). Member of The
Ontario Association for Behaviour Analysis.
(705) 791-0475  Click for more


September 27, 2005
at 7 00pm, in Ottawa
First general meeting of Families Matters Co-op in Board Room of Total Communication Environment (TCE), Unit #5, 203 Colonnade Road S.
Click for more details


October 15, in Pickering, all day
Families for a Secure Future and Durham Family Network offer
Creating a Home of One's Own
Morning of story telling, afternoon of small group discussions.
Click for more and how to register


October 16, in Hillsburgh, all day
Families for a Secure Future offers
Creating a Home of One's Own
Morning of story telling, afternoon of small group discussions.
Click for information and how to register



October 20-23, 2005, in Toronto

Come to Your Senses....
From Theory & Research To Practice: Sensory Therapy & Disabilities
An International Conference for professionals, parents, caregivers & consumers
Presented by Muki Baum Association.

Program includes 37 presenters from 8 countries and a special presentation by Dr Oliver Sacks.



Friday October 21, 2005, 9:30am-4pm
Regional Support Associates presentation on
"Adults with Autism Spectrum Disorders, Mental Health & Behavioural Issues"
Best Western Lamplighter Inn, London, Ontario
Presenters: J. Dale Munro, MSW, RSW, FAAMR and Liliian Burke, PhD., C.Psych.
Click for more information about RSA
including its Video Conferencing service to the Southwest Region

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ISSUES AND INITIATIVES

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


McGuinty Government Helping More Children With Severe Special Needs

The government is providing an additional $10 million to respond to the needs of families in crisis and provide specialized supports where they are needed most.  The extra funding comes on top of more than $100 million in new investments that have begun to make a difference for children and youth with special needs across the province.  This includes building children's treatment centres in parts of the province that didn't have one and providing more services locally through more than 200 new and expanded community mental health programs. 

"We are acting on the advice of community planning teams across the province that have  first-hand knowledge of services for special needs children and families," said Bountrogianni.   "The money will help provide a combination of residential treatment and other specialized supports for children and youth who urgently require care."

Community planning teams made up of special needs service providers, parents and other stakeholders were established by the ministry in April to recommend strategies to expand and improve services so more children and youth can get help in their home communities.  The government is also conducting a review of the residential service system across all sectors to determine what specific measures are needed to improve that system for children, youth and families across the province.


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BOOKS, WEBSITES AND OTHER RESOURCES



AUTISM & THE IRLEN METHOD (OVERVIEW)
The Irlen Syndrome is a type of perceptual processing problem related to sensitivity to lights, glare, patterns, colors, and contrast. This type of perceptual processing disorder affects 12-14% of the population; this number increases to almost 50% in the autistic population. Most people are not aware that they have a problem. They think that how they see and feel is normal......
We've been asked where an adult on the autism spectrum can be tested in southern Ontario. Can anyone help with this information?

Jamie's Watch
Author Eric Ott is father of an autistic son, Kevin, who is now 22 years old. He is profoundly disabled, but the family has managed to keep him home with us and have helped him learn how to make a small contribution to society. The book is a novel about a family with an autistic son. Click on the title for more details.

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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


"Better Than Thou..."
A man with Asperger Syndrome describes how professional people often show a lack of empathy.
 
It seems, when looking back over the years, as though many professionals and administrative personnel that I have come in contact with, were fully determined to practice their own form of hierarchy at any cost--to prove that their way of seeing things is always a "better", "more efficient", "happier", ...way of looking at any situation than anyone else's.
 
Many times, when I try to tell a hurtful situation to someone in the medical or social services, I get the remark: "Why do you let something like that bother you?" I cannot get through to these "pros" that it is not a matter of "letting it" bother me; it is a very painful area of life, just like someone with rheumatoid arthritis (to someone who has never experienced it). They agree that rheumatoid arthritis is painful--anything "physical" like that can, according to them, be painful, but anything outside of the physical realm, ....well, as they see it, it's just a matter of not "letting it" cause one any problems. Even if I give the example of the pain of loss in a family where a member has been killed by a hit-and-run driver, they are willing to accept such pain, but say that it (the pain) is "real", as the family did, indeed suffer a "real" loss, but what I am going through in the painful situation that I described to them is "just in your head", and that I should "snap out of it, and get on with your life!"....
 
To me, that points to a complete lack of empathy on the part of those who feel this sense of "moral superiority". We autistics and aspies are always accused of lacking empathy towards others, when we are only searching for empathy from others, and, not being able to find it (or very rarely finding it), we are driven to withdraw from many contacts in life, as all we get is tons of advice on how to "spruce up" our act, and "think positive", when we are not looking for such advice whatsoever, but for an empathetic ear from someone who will share our feelings about life, even for the moment.
 
This is not to say that all aspies are in a "sad state" of affairs; far from it. Often, for example, when I want to explain that I have been able to experience sheer joy at just following the outline of a tree against the sky (while others around me are, for example, playing golf, swimming, or enjoying a carnival atmosphere at some park), I am told that it is "very inappropriate" to ignore what others around me are doing, and that it is incumbent on me to get rid of my "silly obsession" with trees, and start to engage in what others are doing. This only adds more woes to my life, as the sheer joy of following the silhouette of the tree against the sky is seen as a "disability" by these folks, when I am trying to find others who are willing to share in this joy, as I wind my way along the path of life.
 
These pros are very quick at using the attitude of "yes, ...but" in their conversations, such as: "Yes, you do find beauty in that image, but you are depriving yourself of contact with others by perpetuating such ideas as though the world should stop what it is doing, and come over to you, just so that you do not feel isolated!"

I tell them that I was not expecting "the world" to come over to me, at all, but just to find one other person in the crowd who also could find affirmation in that image that the rest of the crowd seem to be totally oblivious to, or just plain ignoring. Again these pros say that I am expecting too much in others as they are going to do what they are used to doing, and no one could be expected to change his or her life, even for the moment, just to "serve" me and my obsession with this "thing" that is nothing but a diversion away from others, an "escape" from the "reality" of personal contact with others.
 
When I ask why others cannot make personal contact with me, again they say that the onus is on "me" to change my ways, and that it is just "foolhardy" to expect others to change their ways just to "accommodate you and your clever ways at avoiding full integration in the social scenes around you!"
 
This seems to go on, and on, until I can no longer get the "guts" in me to remain in contact with that person, be it a professional (medical doctor, social worker, psychologist, counsellor), or an associate or even a "friend", and then the bridge that I thought would bring a way of bonding to others is abandonned, as I cannot take the "heat" of being reminded constantly that it is I who must change, and that the other person has no "need" to change, at all, even if the other person has severe problems in other areas of life. For example, one lost friend who was told all about AS, and outlined that friend's problem with panic attacks, said, one day, that there had to be a way of finding a "cure" for AS, when that same person had no interest, at all, in finding a way of getting help for their panic attacks.....
 
No wonder others have problems in understanding why persons (such as myself) on the autistic spectrum have difficulty in making or keeping "friends"--many (but not all) of these contacts are far, far too conditional in their approach, even if they claim to offer "unconditional love". They sure do not know how to practice what they preach!


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