ONTARIO ADULT AUTISM
RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
  10 May 2007



OAARSN offers 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.
Read about why OAARSN was started and the tasks still ahead


You may be interested in our Creative Supports Bulletins which carry news about disabilities and special abilities and creative strategies more generally. See for example:  http://www.ont-autism.uoguelph.ca/CS-20060720.html

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 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 announcements 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 if you have an online version to which you can provide a link.

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.

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


OPPORTUNITIES TO SPEAK UP TO OUR GOVERNMENTS
Raising awareness of autism and thinking of national strategies are in the air all over the world just now. See the General Autism News below for items about efforts in the UK.


Dare to Care
: A FEDERAL, PROVINCIAL AND TERRITORIAL STRATEGY FOR A COMPREHENSIVE SYSTEM OF SUPPORTS FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES
This document, prepared by the Advocacy Committee of the Families Matter Co-operative, details a federal, provincial and territorial strategy for a comprehensive support system for all people with developmental disabilities. Such a strategy would affect municipal governments too. Everyone concerned with and for people who have disabilities, is invited to read the document. If you agree, please contact any organizations to which you belong who might express support to the Families Matter Co-operative by the end of May.
"With the Ontario election scheduled for October, we want to distribute the document to the parties in June. We will then ask them to add the ideas therein to their platforms. We will follow a similar process with other parts of Canada with "Champions " leading the way there."
Visit the Families Matter website at
www.familiesmatter.ca where the email contact is  anne.toft@sympatico.ca  and the phone number 613 836-3782


CANADIAN SENATE ADVOCATES NATIONAL AUTISM STRATEGY
Click on title for record of debate in the Senate on May 1. This follows the publication of the
twelfth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled Pay Now or Pay Later, Autism Families in Crisis, tabled in the Senate on March 29, 2007. There may be a national symposium in mid-June.


TELL US YOUR STORY
The Autism Ontario Adult Leadership Group is a province-wide leadership group of researchers, parents, clinicians, service providers, educators, and advocates focusing on matters related to adults on the autism spectrum. 


In order to enhance awareness and understanding of ASD, and all of its complexity, we are looking for the stories of teens and adults living with ASD that we can bring to government leaders and the general public to help shape government policy.
The teens and adults profiled would need to be willing to share their story – both the successes and challenges-- and be willing to have their photo taken.

If you think you have a story, or have some questions, please email Patricia Gallin very soon at pgallin.aso@sympatico.ca


VALUES AND PRIORITIES
As we try to make our communities more aware and to convince governments of the needs and abilities of adults with autism, we might consider two statements drawn up more than 15 years ago. How far have we got in agreeing and acting on these values?

Beyond Programs: a parable

  • In the beginning, there was placement, and lo we were happy when it happened, as placement was not mandated for adults who experience severe disabilities. And so, we said, this is good.
  • And placements multiplied and filled the earth.
  • And then we said, let us make programs, which focus on serving clients. And clients were defined and labeled, and grouped according to their labels. And programs created services for each label, and agencies developed unit costs for each service. And programs prospered and multiplied, and we said, this is very good.
  • And as programs multiplied, a cry arose: Let us evaluate these programs to see how good they really are.
  • And program evaluation, regulations, quality assurance compliance plans and other program measures were created. And they multiplied and filled volumes.
And in those times, a person arose who was a client and who was also a prophet, and said:
Ø      "I don’t want to be a client. I want to be a person.
Ø      I don’t want a label. I want a name.
Ø      I don’t want services. I want support and help.
Ø      I don’t want residential placement. I want a home.
Ø      I don’t want a day program. I want to do meaningful productive things.
Ø     I don’t want to be "programmed" all my life. I want to learn to do the things I like, and go places which I like.
Ø     I want to have fun, to enjoy life and have friends.
Ø      I want the same opportunities as all of you: I want to be happy."
  • And there was a long silence. And lo, everyone realized that they must look beyond their programs.
  • But they were troubled and they asked: "How can we do this? Would not each person need his own unique program and system of support and his own individual measure of quality?"
  • And the prophet replied: "Even as you say, so shall it be done—just as you do for yourselves."

-Michael McCarthy; reproduced from Contact, Sept/Oct 1991.


Charter of Rights of Persons with Autism
People with autism should share the same rights and privileges enjoyed by all of the European population where such are appropriate and in the best interests of the person with autism.
These rights should be enhanced, protected, and enforced by appropriate legislation in each state.
Presented at the 4th Autism-Europe Congress, Den Haag, May 10th, 1992. Adopted as a Written Declaration by the European Parliament on May 9th, 1996.
Click on this link for more detailed explanation of each right: http://www.autismeurope.org/portal/Default.aspx?tabid=30

The United Nations declaration on the Rights of Mentally Retarded Persons (1971) and the Rights of Handicapped Persons (1975) and other relevant declarations on Human rights should be considered and in particular, for people with autism the following should be included:
 
INTRODUCTION
 
 1. THE RIGHT of people with autism to live independent and full lives to the limit of their potential;
 
 2. THE RIGHT of people with autism to an accessible, unbiased and accurate clinical diagnosis and assessment.
 
 3. THE RIGHT of people with autism to accessible and appropriate education.
 
 4. THE RIGHT of people with autism (and their representatives) to be involved in all decisions affecting their future; the wishes of the individual must be, as far as possible, ascertained and respected.
 
 5. THE RIGHT of people with autism to accessible and suitable housing
 
 6. THE RIGHT of people with autism to the equipment, assistance and support services necessary to live a fully productive life with dignity and independence
 
 7. THE RIGHT of people with autism to an income or wage sufficient to provide adequate food, clothing, accommodation and the other necessities of life.
 
 8. THE RIGHT of people with autism to participate, as far as possible, in the development and management of services provided for their wellbeing.
 
 9. THE RIGHT of people with autism to appropriate counselling and care for their physical, mental and spiritual health; this includes the provision of appropriate treatment and medication administered in the best interests of the patient with all protective measures taken.
 
 10. THE RIGHT of people with autism to meaningful employment and vocational training without discrimination or stereotype; training and employment should have regard to the ability and choice of the individual.
 
 11. THE RIGHT of people with autism to accessible transport and freedom of movement.
 
 12. THE RIGHT of people with autism to participate in and benefit from culture, recreation and sport.
 
 13. THE RIGHT of people with autism of equal access to and use of all facilities, services and activities in the community.
 
 14. THE RIGHT of people with autism to sexual and other relationships, including marriage, without exploitation or coercion.
 
 15. THE RIGHT of people with autism (and their representatives) to legal representation and assistance and to the full protection of all legal rights.
 
 16. THE RIGHT of people with autism to freedom from fear or threat of unwarranted incarceration in psychiatric hospitals or any other restrictive institution.
 
 17. THE RIGHT of people with autism to freedom from abusive physical treatment or neglect.
 
 18. THE RIGHT of people with autism to freedom from pharmaceutical abuse or misuse.
 
 19. THE RIGHT of access of people with autism (and their representatives) to all information contained in their personal, medical, psychological, psychiatric and educational records.
 
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GENERAL AUTISM NEWS


Can Our Genes Save Us from Our Environment?
Why do some people end up with cancer, heart disease, or autism while others living under the same conditions don't? ... For instance, why is it that some people can be exposed to high levels of toxic chemicals, such as mercury, and remain healthy, while others suffer brain damage? More important, is there a single gene or multiple genes that protect some people from exposure to mercury? And if so, can this protector gene be used to develop methods for defending everyone against environmental scourges?
In Science, two NIH directors declare that the time has come for a fusion of environmental science and genetics.

Thimerosal Linked To Autism: New Clinical Findings
The Journal of Toxicology and Environmental Health, Part A: Current Issues, an authoritative journal featuring original toxicological research, has published, "A Case Series of Children with Apparent Mercury Toxic Encephalopathies Manifesting with Clinical Symptoms of Regressive Autistic Disorders," by Geier and Geier (2007). This new study leaves little doubt there is a direct causal link between mercury exposure from Thimerosal-preserved biological products (vaccines and Rho(D) products) and mercury poisoning diagnosed as an autism spectrum disorder (ASD). Thimerosal (49.55% mercury by weight) is a highly toxic mercury compound used as a preservative in some OTC and prescription drugs, including most flu shots given to pregnant women, infants, children, adults, and the elderly.

On April 19, 2007, Dr. Larry L. Needham, Chief, Organic Analytical Toxicology Branch, CDC, announced to the US National Academy of Sciences' Institute of Medicine that Thimerosal was among the "Chemicals Linked to ASD."
Thus, Geier and Geier (2007) provide the first clinical case-series of ASD patients that confirmed this causal role for Thimerosal-preserved drugs in patients having a regressive ASD diagnosis.

The Geiers describe a case-series of eight patients who had:

-- a regressive ASD diagnosis,
-- elevated levels of androgens,
-- excreted significant amounts of mercury after a chelation challenge,
-- biochemical evidence of decreased function in their glutathione pathways,
-- no known significant mercury exposures except from Thimerosal-preserved vaccines and Rho(D)-immune globulin preparations, and
-- alternative causes for their regressive ASDs ruled out.

This clinical study also found a significant dose-response relationship between the severity of the ASD symptoms and the total mercury dose these children received from Thimerosal-preserved drugs. Based on differential diagnosis, these patients were exposed to significant mercury amounts from Thimerosal-preserved biologic drugs during their fetal and neonatal development as well as between 12 and 24 months of age. Thus, these initially normally developing children suffered mercury toxic encephalopathies that manifested with clinical symptoms consistent with their regressive ASD diagnosis. Hence, mercury poisoning should be considered as a cause for those children exhibiting the symptoms of an ASD in any differential diagnosis designed to assess underlying causes.

The Age of Autism: Ground Zero
Another column in the series by Dan Olmsted who makes "the controversial case that autism had a beginning, a 'big bang' if you will. That moment was 1930 --no U.S. cases before then fully match the classic description of the disorder. Now let's take the next logical step: Not only did autism have a big bang, it also had a ground zero -- a place where many of the first cases concentrated before the disorder exploded nationwide. Ground zero was the nation's capital, in particular the Maryland suburbs where cutting-edge government research in the 1930s and 1940s exposed families to the chemical that first triggered the baffling disorder." Please click on title to read the full article.

The Age of Autism: Gluten clue from Case 2
Dam Olmsted continues his interpretation of case history data of the first children identifed with autism in the 1930s. Several may well have had contact with ethyl mercury fungicides, notably New Improved Ceresan, which was for use on "wheat, oats, barley, rye, sorghums, millets and flax."
His hypothesis -- "could some of the grains with gluten (to which autistic persons are often sensitive) be grown in areas where residual toxins -- ethyl mercury, say, but in fact any environmental toxin -- are getting into them and thus into our kids? And if some child's body burden or susceptibility is already at the tipping point, could that aggravate or even induce physical and mental symptoms that go by the name of autism?"

Some moms of autistic kids prone to depression

Mothers of children with autism may be prone to depression if they feel responsible for the cause or outcome of their child's disorder, according to the new study, published in the journal Family Relations. Autism is a developmental brain disorder that impairs, to varying degrees, a person's use of language and ability to communicate, interact socially and form relationships. While its cause is not completely understood, genetic vulnerability plays a role. And "bad" parenting definitely does not. Still, with so many questions surrounding autism -- its exact cause, the difficulty in diagnosing the disorder or predicting how well a child will do -- parents constantly deal with uncertainties. Such ambiguity may leave some mothers vulnerable to depression. Click for a comment on this report


UK Autism On Prime Minister Tony Blair's Legacy Agenda
The needs of the 587,900 people with autism and Asperger's Syndrome went straight up the political agenda when Prime Minister Tony Blair met with autism campaigner Ivan Corea and Lee Scott MP for Ilford North in the Prime Minister's Office in the House of Commons on Wednesday 25th April. Autism is on the legacy agenda of Tony Blair who leaves office in the summer. Ivan Corea of the Autism Awareness Campaign UK presented the Prime Minister with The Autism Report calling for an urgent review of autism services for parents, carers and people with autism - the report highlighted the crying needs of people with autism in education, health,specialist speech therapy and respite care across the United Kingdom.
The Autism Awareness Campaign UK was set up in 2000 by parents and carers Ivan and Charika Corea who have a 11 year old son, Charin who has autism spectrum disorder. Since then they have been campaigning for better public services for all people with autism and Asperger's Syndrome. The Autism Awareness Campaign UK has called on the Prime Minister to launch a 10 year program of action and a national strategy on autism.
The call for an urgent review of autism services was backed by three leading figures of the charity world in the United Kingdom: Dame Stephanie Shirley Chair of Autism Speaks and The Shirley Foundation, Colin Headley, Chief Executive of the Disabilities Trust and Julie Spencer-Cingoz Chief Executive of the British Institute of Brain Injured Children. Several community organisations and organisations from faith communities also supported the need for a review.


British MPs Table Early Day Motion Backing Autism Campaign, UK
An influential member of parliament has tabled an important early day motion supporting the Autism Awareness Campaign UK's call for a national strategy on autism and a 10 year plan of action. Autism has been pushed straight up the political agenda in Great Britain.It is having unprecedented coverage in the Palace of Westminster. A major debate on autism took place in March in Westminster Hall, followed by a question on autism in Prime Minister's Questions.

Faces of Autism
A series of six articles in the Vancouver Sun, that look at the battles waged by families living with the disorder and the role of the government.

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ONTARIO ISSUES


Supreme Court halts parents' autism funding appeal
The Supreme Court will not hear arguments on the matter of who should pay for costly specialized treatment for autistic children in Ontario. The court's decision halts the lengthy legal challenge of 28 Ontario families with autistic children who argued the province was discriminating against autistic children and should pay for intensive behavioural intervention therapy (IBI), as well as provide it in schools. The families initially won a court ruling over government financing for the therapy, but the decision was overturned by the Ontario Court of Appeal in 2006.
Click on title for one of many news stories.


MCSS Spotlight on Transformation Bulletin, April 2007
The second Developmental Services Bulletin from the Ontario Ministry, that mentions various initiatives in the process of transforming developmental services in Ontario. Click on title to read the bulletin and reach links.

·        Important policy changes made to the Special Services at Home (SSAH) program in 2005 to expand eligibility for SSAH and to create a more flexible program that gives people more choice in how services are delivered.

·        The launch of the Ontario Developmental Services Career Connections Grant in 2005 to enhance opportunities for students to develop the clinical and research skills they need to be professionals in the field of DS in Ontario.

·        The launch of the Passport Mentoring Initiative in March 2006, which has sparked overwhelming interest.  This initiative exposes secondary students to post-school experiences and helps them explore their community so they can make informed decisions about what they might like to do when they leave school.

·        The establishment of four regional Community Networks of Specialized Care in March 2006 across Ontario.  These networks connect the specialized services system, thereby better coordinating resources, increasing the range and availability of specialized supports and building expertise and community capacity through joint research, training and education initiatives.

·        Opportunities and Action, a consultation paper that outlined a new vision for supports for people with a developmental disability and invited input from individuals, families and organizations was released in May 2006. 

·        An Expert Panel on Eligibility for Developmental Services convened and met over the summer and fall of 2006 to advise on the eligibility criteria that would define more clearly who has a developmental disability and is eligible to apply for ministry-funded supports and services.

·        Since Opportunities and Action was released, amongst other projects, the ministry has been working with self-advocates, families, community agencies and associations to design a consistent and streamlined process to apply for DS and supports.  A new application package has now been tested.


Family Alliance Ontario

Become a member for $25/year.
Barbara Ostroff writes: "All funds that support our work come from our membership drive.
We are a very ‘lean' organization. No staff. A Board of 13 people from across the province dedicated to supporting families and improving the lives of our sons and daughters, brothers and sisters, friends and neighbors. And an extended community reach through the 18 local family networks that are affiliated with us and share our goals.
 
"Our work is all done by volunteers, including  
 * the provincial and local advocacy we engage in to support the transformation of the developmental services system,
 * the parent to parent support and networking the Alliance and our local networks initiate
 * the planning and delivery of our annual conference
 * the writing and editing of our newsletter, The Compass
 * the thousands of discussions, meetings and committees our members are involved in to promote the real participation of our sons and daughters, brothers and sisters, friends and neighbors
* our efforts to promote systemic change in communities so that families don’t get worn out fighting one battle at a time
* our work with other groups who share our goals and values to achieve specific changes in the kind of supports available
    to people with disabilities
* our efforts in the last three years to raise the profile/voice of our sons and daughters, brothers and sisters, friends and
     neighbors in post secondary settings
* our work to facilitate the increased involvement of families and people with disabilities in research."

Please click here for membership form
Learn more at the FAO website

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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

_________________________________


May 14-15, 2007, in Ottawa
Fourth International Conference on Social Role Valorization:
Crafting Valued Social Roles

Click for conference information
Click for registration details


May 24, 6:30-8:30 pm, in Guelph
Community Mental Health Clinic & Family Counselling & Support Services present
Parents are People Too (Spring Series/07)
May 24:     THERE’S A STORM UP AHEAD--anger and how to manage it
Pre-registration needed: Click for full details 6:30-8:30 pm, in Guelph


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.


May 31, 6:30-8:30pm, in Guelph
Community Mental Health Clinic & Family Counselling & Support Services present
Parents are People Too (Spring Series/07)
SAFE & INCLUSIVE SCHOOLS
Pre-registration needed: Click for full details'

Saturday, June 2, 2007, in London
Treating Autism, PDD, AD(H)D and Behaviour Disorders
Biomedical Treatments That Make a Difference!

Mini-Conference at London Public Library - Beacock Branch
Click for full details and registration form


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.
Click for more information and to register

June 18, 6:30-8:30pm, in Guelph
Community Mental Health Clinic & Family Counselling & Support Services present

Parents are People Too (Spring Series/07)
RESPITE OPTIONS for families in Guelph & Wellington County
Pre-registration needed: Click for full details


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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PROJECTS AND RESOURCES


Digital Imaging for Employment Projects
The realm of digital imaging and other electronic office activities is opening up a full range of working opportunities for people with developmental disabilities. This has been an exciting new experience for many, moving them from service and support jobs to more regular posts in office settings.
"The Economics of Imaging" (Video) — Digital imaging is a win-win solution for businesses that need to find a cost effective way to manage their business records and hiring people with developmental disabilities to do imaging work contributes to the success of this business venture. Learn about the savings, the benefits, and the future of digital imaging from government and private sector businesses that have hired people with developmental disabilities in digital imaging positions.
View the brochure as a Web page or download the PDF version. Printed copies of the brochure are available from the Publications page in packets of 25.


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


The Julien Project of Horticultural Therapy
is being launched this Spring in
Guelph
,
at Ignatius Centre/Orchard Park in the "Courtyard" at 5420 Highway 6 North, R.R.#5,
Guelph.
Led by Founder Sharon Stewart, Horticulture Therapist and Registered Nurse, and inspired by the THRIVE, UK model (www.thrive.org.uk)the project is open to people who are living with physical disabilities, mental health issues, and other life challenges. Groups and Individuals will attend at the site, work the land, plant, cultivate and harvest the crops, and use the yield for food preparation (at home), horticulture workshops, and creative activities.
Volunteers will assist the gardeners, as well as the therapists, social workers, care providers, etc., affiliated with the group in attendance. You are invited to learn more about this new, exciting initiative, including how your group, and/or the folks you support can access this program. Please contact Sharon Stewart at sharonstewart@sympatico.ca 

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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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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.