ONTARIO ADULT AUTISM

RESEARCH AND SUPPORT NETWORK
OAARSN NEWS BULLETIN
   22 July 2008



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GENERAL AUTISM NEWS, MAINLY ABOUT ADULT ISSUES


Real Autism
A sceptical comment on the apparent explosion of "autism spectrum disorder." Thomas Sowell, a senior fellow at the Hoover Institution, Stanford University, writes: "Parents need to be spared the emotional trauma of false diagnoses and children need to be spared stressful treatments that follow false diagnoses." And: "Real autism may not get as much money as it needs if much of that money is dissipated on children who are not in fact autistic."

Researchers pulling back the veil on adult autism
"Autism in children has never been more in the news. But few are talking about the adults, experts say, and few therapists are available to treat the illnesses in adults just as more are seeking help...." The article in The Vancouver Sun includes Canadian references. Many adults with autism recognize something is wrong, Dr Deborah Elliott of Kingston is quoted as saying. "They know they're not 'getting it.' They're not getting cues from people, they know they're being marginalized, they're aware they're different. You can help them understand that they have a syndrome that makes them different," Elliott says. "That somehow relieves them from feeling that they're doing something terribly wrong."


Genes from Middle East families yield autism clues
Harvard researchers have discovered half a dozen new genes involved in autism that suggest the disorder strikes in a brain that can't properly form new connections. The findings also may help explain why intense education programs do help some autistic children - because certain genes that respond to experience weren't missing, they were just stuck in the "off" position.
"The circuits are there but you have to give it an extra push," said Dr. Gary Goldstein of the Kennedy Krieger Institute in
Baltimore, which wasn't involved in the gene hunt but is well-known for its autism behavioral therapy. The genetics suggest that "what we're doing makes sense when we work with these little kids - and work and work and work - and suddenly get through," he said. But the study's bigger message is that autism is too strikingly individual to envision an easy gene test for it. Instead, patients are turning out to have a wide variety, almost a custom set, of gene defects.


Further Evidence For Genetic Contribution To Autism
"Some parents of children with autism evaluate facial expressions differently than the rest of us--and in a way that is strikingly similar to autistic patients themselves, according to new research..." The lead author notes: "A very important part of our paper is that we are not claiming all people with autism, or their parents, are 'impaired.' Instead, our study shows that parents who have children with autism--like the autistic subjects themselves--are different, and do things differently."
The paper, "Selective face processing abnormalities in parents of autistic children," is published in the journal Current Biology..


Autism disrupts work and pay for families living with autism
"Parents of children with autism earn less and report more disruptions in their work, a new report by the
American Academy of Pediatrics found. An emerging body of work is showing the impact an autism diagnosis has on a family, in part because there aren't enough services and support for this growing population. But researchers are still figuring out the impact. We reported on the strain and higher incidence of anxiety and depression among parents of children with autism... We learned today that more than twice as many parents, 39 percent, reported quitting, passing on a job or making major changes in a job because of child care issues tied to a child with autism, in a study of parents of 16,282 preschool-age children." Click on link to read more.


Autism parent-caregivers may have weakened immune systems
Caring for children with developmental problems such as autism or Down's syndrome can weaken parents' immune systems, research suggests. Researchers at Birmingham University found they had a poorer immune response to a vaccine against pneumonia. It appears that stress causes the immune system to function less efficiently, the team wrote in the journal Brain, Behavior, and Immunity. Amanda Batten, head of policy and campaigns at the National Autistic Society, said: "Carers often display great strength and resilience whilst coping with this complex disability, but many receive very little help and support, and are under considerable stress as a result. It is imperative that carers are given access to services such as short break schemes to help them before they reach a crisis point."


Autistic students get help navigating college life
A story about Achieving in Higher Education with Autism/Developmental Disabilities, a group at the Community College of Allegheny County in
Pittsburgh that helps college students with Asperger's syndrome.

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CRITICAL ISSUES IN ONTARIO

Bill 77: a New Ontario Act to Govern Developmental Services

How Goes the Transformation?

In mid-May 2008, the Minister of Community and Social Services introduced new legislation covering services and funding the Ontario Government may provide for persons with a developmental disability. The last full act on the subject was passed in 1974. One reason for the legislation is to wind up the Government’s direct management of “Schedule 1” facilities which are due to close within the next year.

The new act could also crown more than four years of consultation devoted to “transforming” Ontario’s system of developmental services, begun in May 2004 by the newly elected Liberal Government of Ontario. Various stakeholders--family members, persons with disabilities, volunteer members of supporting organizations, and staff of funded agencies--were involved. People who had been advocating more choice and control by those with disabilities have welcomed the Government’s initiative in opening up conversations about ways to improve Ontario’s supports and services. For once, there was intensive public discussion of the vision, values, principles and objectives of transforming developmental services, including citizenship, fairness and equity, accessibility and portability, safety and security, accountability and sustainability. In the Ministry’s words, the transformation agenda set out to achieve greater independence, dignity and self-reliance for individuals with a developmental disability, and offers more choice and flexibility for families and stimulates innovation and creativity.

During this process, the Ministry convened special advisory panels, invited submissions, and funded pilot projects of various kinds. We have reported most phases of this process, including the partial implementation of some new initiatives such as Passports (created from 2006 to provide opportunities for individuals who have a developmental disability and who have left school to find more ways to participate in their communities”) and the Innovative Residential Model Initiative. Some changes are still being tested and others have yet to be evaluated. The following links may provide more information on the consultations and demonstration and pilot projects:

Opportunities and Action - Transforming Supports in Ontario for People who have a Developmental Disability (May 2006)
http://www.mcss.gov.on.ca/NR/rdonlyres/D643669A-74A8-420C-8042-6D46343106C1/92/DSreport.pdf
Spotlight on Transformation (A Developmental Services series of electronic bulletins from the Ministry of Community and Social Services:
February 2007 to July 2008)
http://www.accesson.ca/mcss/english/pillars/developmental/what/transformation_index.htm

In introducing Bill 77, the Minister declared again that the new system would be "based on citizenship, fairness, accessibility, accountability and sustainability.” Click to read Bill 77, as submitted for first and second readings:
http://www.ontla.on.ca/bills/bills-files/39_Parliament/Session1/b077.pdf
A “plain-language compendium” version of Bill 77 has also been produced, which may be found at this link: http://www.ont-autism.uoguelph.ca/Plain-Lang-Compendium-LSBapproved.pdf

Through our concern with and for adults with autism, we welcome the stated values and scope for more choice and control, as very appropriate for people who can be so vulnerable and are so different from one another. As John Lord said of one of our adults in 1998: “The more complex the needs, the more individualized the supports must be.”

However, a close reading of Bill 77 leaves us puzzled and disappointed that so little of the vision and values of the transformation language and strategies are reflected in the legislation as drafted. Here are some of the points that concern us.

A better title could refer to the goals of changes in the legislation. So could a preamble that might refer to the principles of the United Nations Convention on the Rights of Persons with Disabilities, as part of its commitment to realizing universal human rights for all, which Canada signed earlier this year (but has not yet ratified).

The draft act allows for a “direct funding” option, more or less as advocated by the Individualized Funding Coalition of Ontario for at least ten years. But to be effective, this option needs some other supports that are not mentioned in Bill 77. One is recognition of the legal capacity of a person with a developmental disability, together with close family supporters as needed, to make a direct funding agreement and direct how funds will be used. People who choose to direct the use of their funds also need access to independent planning and facilitation, as well as support with human resources and administration of the funds. Funding allowances for individuals who choose to self-direct would have to be equivalent to levels approved for staff in agencies.

A prominent new feature in Bill 77 is its detailed provision for application centres in each region, to be funded but not directly administered by Government. The functions of these centres are all-encompassing, ranging from determining the eligibility of any persons with a developmental disability to receive funded services and supports, providing information about how to find such resources, and decisions about to whom and how much funds should be granted, to monitoring and accountability. We suspect that such centres are not likely to be really helpful to persons who choose direct funding, as the staff cannot be independent of other pressures and interests to be able to working for and with each person with a disability. There is concern also that funding the application centres will be at the expense of supports and services to people who need them. An associated concern is the official sanction of waiting lists, as it is assumed there will always be a greater demand that the Government has funds available.

The bill gives Ministry officials quite sweeping powers to enter homes or take over service agencies, but it lacks any mechanism to protect vulnerable individuals who may suffer the consequences of the actions of others or who may want to speak up for their rights.

While some provisions are spelled out in detail, a good many topics and functions are left to be decided later by senior administrators of the Developmental Services Branch and to be implemented through regulations. We are concerned that there should be consultation on the scope and likely effects of these future regulations.

What can we do now?

Various groups have developed responses to Bill 77, including Community Living Ontario and a Province-wide Ad Hoc group convened by Judith McGill of Families for a Secure Future. We hope to provide links to these and other responses. FSF is hosting an information night in Guelph on Thursday, 24 July on Bill 77. Anyone interested should email Joanna Goode for details: jgoode@sympatico.ca

It is possible to submit comments and concerns to Hearings of the Standing Committee on Social Policy in early August (at four different locations, including Ottawa, Toronto and London), or to send your written submission to the Clerk of the Standing Committee on Social Policy by August 12. The Clerk’s address: Room 1405, Whitney Block, Queen's Park, Toronto, ON M7A 1A2.

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RESEARCH REPORTS

Prevalence of Autism Among Adolescents With Intellectual Disabilities
An article by Susan E. Bryson and Elspeth A. Bradley in The Canadian Journal of Psychiatry, Vol. 53, No. 7, July 2008, 449-459.
Abstract: The prevalence of autism was examined using the Autism Diagnostic Interview-Revised, with appropriate care taken in assessing lower functioning individuals and those with additional physical and sensory impairments. Individual assessment during psychological evaluation, and consensus classification of complex cases, involving clinicians experienced in the assessment of autism, contributed to the identification of autism.
Overall, 28% of individuals, or 2.0 of the 7.1/1000 with ID in the target population (as we have previously identified in another study), were identified with autism.
Autism rates did not differ significantly across severe ID (32.0%) and mild ID (24.1%); males predominated (2.3 males to 1 female), but less so for severe ID (2 males to 1 female, compared with 2.8 males to 1 female for mild ID). Socioeconomic status did not distinguish the groups with and without autism. Less than one-half of the adolescents who met diagnostic criteria for autism were previously diagnosed as such.

Micronutrients in Autism
Please click on this link to reach the presentation by Dr Joan Jory in Guelph on 22 June 2008, at a
meeting organized for Autism Ontario's Wellington Chapter.
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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

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Announcing Series of Events
PLAN Institute offers
Weaving the Ties That Bind
Online Training Course for Facilitating Social Support Networks
"Facilitated social support networks are an effective way to address the isolation and loneliness of many people living on the margins of our society. These networks (also known as “circles of friends”) are proven to contribute to the health, safety and well being of individuals who are vulnerable as a result of age, disability or social circumstance."
Click on title for details of availability and to register--for September, October, or November.

Fall 2008, between October 18 and November 29, in Oshawa
Compassion in Action: Open Mind, Open Heart, Skilful Means
an 8-part introductory seminar series in compassionate practices with Felicia Jervis.
THE HEART OF THE MATTER: Some children and adults express themselves through actions that are at times difficult to understand and support safely. These actions may include: occasional withdrawal or aggressive acts towards self, others and property. These actions must be understood not as challenging behaviors that need to be controlled or eliminated, but rather as communicative acts that often speak of the pain of humiliation and rejection, and a yearning to belong....
Click for full brochure and how to register in the workshop series

Click to read "When children hurt themselves"
by Felicia Jervis in BLOOM magazine on the Bloorview website


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Announcing Individual Events


August 11-14, 2008: at Durham campus, University of New Hampshire

10th Annual Autism Summer Institute on theme
"Emotion, Behavior, and Belonging"
Three adults who have overcome obstacles related to living with autism spectrum disorders will speak:
-Amanda Baggs, a college student recently featured on CNN who has autism and uses a computer to communicate
-CarolAnn Edscorn, a mother with Asperger Syndrome
-Ros Blackburn, a lecturer from England.
"The goal of the Autism Summer Institute is to provide perspectives which focus on students' strengths in order to improve the quality of education in inclusive settings. Participants will gain skills and knowledge that will help support the full participation of students with ASD in their schools and communities."
Link for more information


September 4-7, 2008
US Autism & Asperger Association presents
2008 International Conference in San Antonio, Texas
featuring Paul Shattock and Doris Rapp
Conference Theme: Treating Autism as a Medical Disorder:
Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together

Click for overview and early registration



September 17-18, 2008: in Ottawa and Cornwall
Dennis Debbaudt’s "Autism Risk & Safety Management Workshop
Autism Ontario is very pleased to be able to provide the Ottawa and Upper Canada (Cornwall) communities a workshop providing valuable information on Autism Risk & Safety Management by Dennis Debbaudt.

For more information regarding Dennis Debbaudt, visit his website www.autismriskmanagement.com
Sessions at each workshop:
The morning session is for Parents and Care Providers.

The afternoon session dedicated to Law Enforcement, Fire and Rescue, First Response Teams and Criminal Justice Professionals.
For more information regarding the
Ottawa workshop, please email nancy@autismontario.com
For more information regarding the
Cornwall workshop, please email autismcornwall@gmail.com or visit their chapter website: www.autismontario.com/uppercanada


October 3-5, 2008, in Ottawa
Family Alliance Ontario Annual Conference
Engaging Families and Building Bridges
Links for more conference information:
Click for flyer in English
Click for flyer in French
Click for registration form in English
Click for registration form in French
Book your rooms early to get the best rates.
There are a few subsidies for families who have a family member with a disability; for more information on this contact:
Hamilton Family Network: 22 Leeming Street, Hamilton, ON L8L 5T3; Tel: (905) 526-7190; e-mail: hamiltonfamilynetwork@bellnet.ca or Family Alliance Ontario at: email: alliance@family-alliance.com or through the web site at: www.family-alliance.com

Going on in Ottawa at the same time is the “Encampment” project which may be of interest to some participants: On October 2 to 4, 2008, 70 tents will be assembled in Major’s Hill Park for 2 days and evenings. Sokoloski & McCowan are working with the (CACL), through a 50th anniversary cultural initiative curated by Clara Hargittay, and in partnership with the (NCC). The artists will shape an unprecedented national version of The Encampment. A group of Creative Collaborators, representative of Canada’s regional diversity, will be invited to research the history and stories of intellectual disability. They will then take part in a collaborative process to create individual tent installations inspired by these stories.  For more information go to:
www.theencampment.net and click on concept on the left side bar.


October 22, 23, 24, 2008, in Toronto
Autism 2008 – Geneva Centre for Autism International Symposium
The Symposium will provide a cross-section of perspectives on the most recent research and information on evidenced based best  practice.  All topics of importance to autism intervention will be addressed including bio-medical and neurobiological research, ABA, intervention, social skills, behaviour, communication, first-hand accounts, Asperger’s Disorder, and more.  Featuring speakers from Canada, U.S., Great Britain, and Australia.  For registration information, visit www.autism.net or contact Eva Finna at efinna@congresscan.com or 416-504-4500 ext. 208.


Friday, October 24-Saturday, October 25, 2008
Organization for Autism Research hosts its
Sixth Annual Applied Autism Research and Intervention Conference
at the Westin Arlington Gateway in Arlington, VA.

Read all about Day One.
Click for information and early-bird registration


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MORE ABOUT OAARSN

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.

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