GENERAL AUTISM NEWS, MAINLY ABOUT ADULT ISSUES
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."
pulling back the veil on adult autism
Bill 77: a
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.
act could also crown more than four years of consultation devoted to
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
Spotlight on Transformation (A Developmental Services series of electronic bulletins from the Ministry of Community and Social Services: February 2007 to July 2008)
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:
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?
groups have developed responses to Bill 77, including Community Living
and a Province-wide Ad Hoc group convened by Judith McGill of Families
Secure Future. We hope to provide links to these and other responses.
hosting an information night in
possible to submit comments and concerns to Hearings of the Standing
on Social Policy in early August (at four different locations,
Ottawa, Toronto and London), or to send your written submission to the
the Standing Committee on Social Policy by August 12. The Clerk’s
1405, Whitney Block, Queen's Park,
RESEARCH REPORTSPrevalence 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. ________________________________________________________________
ANNOUNCEMENTS OF EVENTS
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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"
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
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.autismriskmanag
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
For more information regarding the
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
(905) 526-7190; e-mail: email@example.com or
Family Alliance Ontario at: email: firstname.lastname@example.org
or through the web site at: www.family-alliance.com
www.theencampment.net and click on concept on the left side bar.
October 22, 23, 24, 2008, in Toronto
Autism 2008 –
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,