GENERAL AUTISM NEWS, MAINLY ABOUT ADULT ISSUES
John McVicar of
Thought I would let you know about a new kind of vacation I took this year. It was two weeks in
Revealed: ‘invisible’ adults living with autism
"More than half of adults with autism in Scotland do not get enough support and thousands struggle through life feeling isolated and ignored. The largest-ever survey into the experiences of adults with autism has revealed that many have to battle to access services and are often completely dependent on their families. According to the National Autistic Society (NAS) Scotland report, due to be launched this week, 52% of adults have not had an assessment of their needs since the age of 18, just over one in 10 adults with autism is in full-time employment and more than half reported being bullied or harassed.
It is estimated that more than 35,000 adults in Scotland have the condition, but campaigners said they were "invisible" to local authorities, who are failing to record the number of people with autism in their area. The NAS's Exist campaign is the first major initiative to focus on the needs of adult with the disability. Joanna Daly, policy and parliamentary officer for NAS Scotland, said one difficulty was that many people thought of autism as a childhood condition. "A lot of people don't understand it is a lifelong condition, and this report is calling for adults with autism to be recognised," she said. Daly added that many older adults had grown up when knowledge of autism was in its infancy and were only now being diagnosed. "They have really just struggled through life ... a lot of the time they have relied on their families for support and are getting to a stage now where that support may not always be there for them," she said. "These adults need to be supported to make a smooth transition to a more independent life."
Fight for a different normal
In the Australian state of Victoria, thousands of young people with Asperger syndrome or high-functioning autism have dropped out of mainstream high schools and are spending their lives locked in their bedrooms watching television or on the PC, say autism experts. These young people have serious problems interacting with others and coping with school because of their disability but receive little State Government-funded help because they do not meet the strict criteria for assistance.
Bruce Tonge, a child and adolescent psychiatrist at Monash University, says many 16-year-olds with an autism spectrum disorder drop out from about year 9 but are not eligible for adult autism services because they do not have an intellectual disability. "They can then spend years in their room staring at the computer, becoming increasingly depressed and sometimes aggressive with their parents," Professor Tonge says.
Young people with Aspergers are also over-represented in jails and among the homeless. Jeanette Purkis, a former client of Alpha Autism, has written a book, Finding a Different Kind of Normal: Misadventures with Asperger Syndrome, where she explains that, until she was diagnosed, she made sure she returned repeatedly to jail, partly because she found its structure easier to understand than life outside.
Autism aid is back on the table
New Jerseyans with autism would gain a government advocate, insurance coverage for promising treatments and help with living arrangements under a second wave of legislation detailed Wednesday. In all, Assembly leaders say, they will propose six bills to support adults and children diagnosed with the neurological disorder. A similar effort in 2007 resulted in an eight-bill package -- signed by Governor Corzine -- that added millions of dollars for research, among other initiatives.
New forms of help would also create identification cards (that could, for example, could convey that the bearer may act atypically, but is not a danger), establish a Web site as a clearinghouse for all autism-related services available in New Jersey and set up a student peer program in Grades 7-12, for typical students to interact with those who have autism.
Autism advocate leads by example
The new president of Alpha Autism [in Melbourne, Australia] knows first-hand how hard it is to live with an autism spectrum disorder (ASD). John Lang, who heads the board of this employment and support service for adults with autism, was mercilessly bullied at his secondary school. Things got so bad he left school in year 11 and shortly afterwards had a nervous breakdown. It only made sense when he was finally diagnosed with Asperger syndrome at 17. Now 35, he says his difficulties were no different to those many young people with Asperger syndrome still face in mainstream schools. He sees the fact that he has an ASD as a huge plus in advocating for those who seek help from Alpha after leaving school.
Visit Alpha Autism's website
The Truth About Autism: Scientists Reconsider What They Think They Know
An extended essay in Wired Magazine that begins with a profile of Amanda Baggs of Vermont who is "part of an increasingly visible and highly networked community of autistics.. [who] are now leading a nascent civil rights movement... This movement is being fueled by a small but growing cadre of neuropsychological researchers who are taking a fresh look at the nature of autism itself. The condition, they say, shouldn't be thought of as a disease to be eradicated. It may be that the autistic brain is not defective but simply different — an example of the variety of human development. These researchers assert that the focus on finding a cure for autism — the disease model — has kept science from asking fundamental questions about how autistic brains function. A cornerstone of this new approach — call it the difference model — is that past research about autistic intelligence is flawed, perhaps catastrophically so, because the instruments used to measure intelligence are bogus." This claim is discussed with reference to the Canadian research of Dr Lawrence Mottron and his researcher Michelle Dawson in support of the hypothesis that "so-called low-functioning people like Amanda Baggs are more intelligent than once presumed." Click on the title to read the full essay.
Finding her voice in a silent world
Unable to speak, an autistic teen learned to communicate through typing, offering hope to families struggling with the disorder. Carly Fleischmann, 13, can't speak and doesn't attend a regular school. For years, her parents sought therapists and doctors to help their daughter break the intellectual and emotional silence that often accompanies the life of autistic individuals.
Speaking at a meeting of the Royal College of Psychiatrists' Academic Psychiatry conference, Prof. Michael Fitzgerald, Professor of Psychiatry at
David Kirby reports:
After years of insisting there is no evidence to link vaccines with the onset of autism spectrum disorder (ASD), the US government has quietly conceded a vaccine-autism case in the [US] Court of Federal Claims.
The claim, one of 4,900 autism cases currently pending in Federal "Vaccine Court," was conceded by US Assistant Attorney General Peter Keisler and other Justice Department officials, on behalf of the Department of Health and Human Services, the "defendant" in all Vaccine Court cases. The child's claim against the government -- that mercury-containing vaccines were the cause of her autism -- was supposed to be one of three "test cases" for the thimerosal-autism theory currently under consideration by a three-member panel of Special Masters, the presiding justices in Federal Claims Court.
Keisler wrote that medical personnel at the HHS Division of Vaccine Injury Compensation (DVIC) had reviewed the case and "concluded that compensation is appropriate."
Vulnerable Adults: What are the Safety Checks?
A discussion paper by Gail Jones about the extent of abuse of adults with disabilities by their caregivers, and prompted especially by the tragedy of Tiffany Pinckney, a young woman with autism in Mississauga who was neglected by her sister and starved to death in 2005. Gail is Director of Community Supports with Kerry's Place Autism Services and knew Tiffany.
The author invites discussion "to create increased awareness and discussion about the issues relating to safety mechanisms for adults who are vulnerable due to severe/multiple disabilities and potential life circumstances." She points out that we need a balance between "protection when needed for adults who are vulnerable" and encouragement for the "autonomy, rights and freedoms that people with disabilities have worked so hard to achieve."
Click on title to read the discussion paper. Click here for a note about Tiffany's death
Vulnerable people may be abused by others besides family members. Click here to read a Globe and Mail editorial on February 25 about failures of the care system in New Brunswick. One of the two cases reported by the Ombudsman there is a youth with Asperger's.
Special Services at
Home Provincial Coalition (SSAHPC)
released new position paper
In our past bulletins we have noted progress of plans for the Registered Disability Savings Plan. Click for a description of the RDSP by the Canada Revenue Agency and a discussion by PLAN, the organization that spearheaded advocacy of the RDSP
However, families should be a bit cautions about this form of financial planning and when it will be available. Click for the February bulletin of the Special Needs Planning Group.
CALLS FOR HELP
Physicians who are Sensitive to Autism
We continue to receive appeals for advice of various kinds, including regular requests for recommendations of medical doctors in any part of Ontario who are "understanding and accepting of patients who are people with autism and who have a more holistic approach to treatment for medical conditions etc."
ANNOUNCEMENTS OF EVENTS
send submissions for
this news bulletin or for the OAARSN Calendar and Bulletin Board in
format by email to firstname.lastname@example.org with
"announcement" at the beginning of the subject line.
The first two initiatives below are for children and in a limited geographical area, but may stimulate useful programming ideas for adults and for elsewhere....
Parents and Professionals Together, in Guelph-centred region
A series of workshops in
February 28: How to find and train respite workers
March 6: Understanding behavioural challenges
March 27: Dealing with people unaware of a child’s needs
April 10: Sleep difficulties
April 24: Spark of Brilliance—for all ages
Click for flyer with more details
Spark of Brilliance announcement... , in
Spark of Brilliance along with Trellis and KidsAbility and will be meeting with families, children and supportive professionals on Thursday, April 24 from 7 to 9 pm at 8 Royal Road to present our program and generate dialogue that will enable us to provide the very best in creative programming!In conjunction with the new initiative Spark of Brilliance is offering a new section on its website where children and families living with autism and developmental challenges will have the opportunity to spotlight their gifts and talents and connect with others with similar experiences. Please visit www.sparkofbrilliance.org/kidzcreate
Click for schedule
Click for letter
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 April, May, September, October, or November.
Support Associates (mainly in
March 4, 2008, 7-8:30pm, in Ottawa
Lifetime Networks Ottawa workshop
on the new Registered Disability Savings Plan
at 406-1390 Prince of Wales Drive
Register early: limited to 10 participants
Click for flyer with details including fees
Monday, March 10, , at Kitchener Public Library
John Lord and Peggy Hutchison talk about their book
Pathways to Inclusion: Building a New Story with People and Communities
in the KPL’s Learning for Wellness series
The authors look at how our communities accommodate people with disabilities and discuss how society needs to change so our more vulnerable citizens move towards social inclusion.
Read Ted McCartney's review of this book for OAARSN
Copies of the book will be on sale.
Changing the World One Person at a Time: The Canadian Experience
Sponsored by Community Living
Living, Canadian Association for Community Living
Celebratory Harp Concert
Harpist Judy Loman celebrates her 50th season as a professional musician in
April 3 & 4, 2008, in
Autism Awareness Centre Presents Michelle Garcia Winner
Thinking About YOU Thinking About ME and Implementing Social Thinking Concepts
and Vocabulary into Our School and Home Day: A Day to Develop Team Creativity
Contact Victoria Harris for more information at email@example.com
Telephone Toll Free 1-866-724-2224 or (780) 474-8355 Fax: (780) 477-8350
Register On-Line or download brochure at www.autismawarenesscentre.org
April 10-11, 2007, 9am to 4pm, in Toronto
Facilitation Workshop: Building a New Story
A New Story across Canada involves the creation of individualized supports
and strengthening communities through the presence and participation of all citizens.
Led by John Lord and Charlotte Dingwall whose approach to training recognizes that
all of us can benefit from the skills of listening, planning, group work, collaboration and
negotiation--the essence of facilitation.
Click for brochure and registration form
April 19, 2007, in Toronto
The Specialty Food Shop presents
A Gluten-Free Cooking Demonstration for people who follow a gluten-free diet
Conducted by: Donna Washburn PHEc & Heather Butt PHEc
Click for more details
April 23-24, 2008
Stages of Autism: Adolescence and Beyond
2nd Biennial Conference
In Hamilton Convention Centre
Message from Michelle McIntyre, event organizer: "The first Stages of Autism: Adolescence & Beyond Conference attracted 300 parents, educators, service providers and healthcare practitioners from all over Canada and the US. Don’t miss out on this great opportunity to attend a unique conference that will provide an open forum for discussion and cover a multitude of topics related to adolescent and adult Autism Spectrum Disorders."Click for links to full conference information
Thursday April 24, 7 to 9 pm, in Guelph, discussion of
NEW INITIATIVE OFFERED FOR CHILDREN WITH AUTISM
Spark of Brilliance announces a new initiative for children and their supportive/families allies living with autism and developmental challenges!
KidZCreate will be launched in the spring of 2008! Highly qualified Creative Mentors will be facilitating workshops in creative expression, learning about nature, experiencing music and sounds, working with creative materials, and much more!
Spark of Brilliance along with Trellis and KidsAbility
and will be meeting with families, children and supportive
professionals on Thursday April 24 from 7 to 9 pm at 8 Royal Road to
present our program and generate dialogue that will enable us to
provide the very best in creative programming! Please click on link for
Recovery Rising - Meet the Strongest Gathering of Biomedical Presenters
Ever Assembled at an Autism One Conference
Parents.Doctors..Recovering children together
Autism One, a member of the Autism Collaboration (http://www.autism.org), the most experienced collective body of autism organizations worldwide covering all aspects of the spectrum, joins in celebrating the message that "autism is treatable and recovery is possible."
The Autism One 2008 Conference will bring together the most recent research and treatments in the most crucial biomedical areas:
-Toxic burden and detoxification
-Immunological dysregulation and autoimmune activity
-Metabolic profiles, including methylation capacity and transsulfation
International Conference of Center for Self-Determination
”Cutting Edge in a City with an Edge”
§ Discussions about meaningful lives, real freedom
§ Community membership, income asset & development
§ Aging with dignity & freedom
§ Recovery in the context of self-determination
§ Families truly supported to best assist in developing self-determined lives
§ International perspectives on these issues as well as discussions of what system change requirements are needed: what works and what interferes
Click for more information
International Conference on Diverse Abilities & Innovative Supports 2008
Join us as we explore topics such as:
Dual Diagnosis * Direct Support Worker Issues & Solutions
Supervision & Managment * Clinical Issues
International Best Practices * Self-Advocacy/Independent Living
Autism/Aspergers * Employment * Caregiving
Find out more from http://www.lifelibertyandthepursuitof.com
International Conference 2008 presented by Laurier Centre for Music Therapy Research
Exploring the relationship between music therapy and music education
Music Therapy keynote speaker, Dr Amelia Oldfield of the
Click for full information
AND OTHER RESOURCES
Place Called Home--second
edition now available
Alison C. Ouellette is happy to announce the newly updated and revised second edition of “A Place Called Home” this month. It describes the journey of the Ouellette family and their son David’s quest for an everyday life, and contains new stories of a life unfolding, photos and contributions by friends and family.
Read this testimonial by Jan Burke Gaffney,
Although the Ouellette family story is so beautifully told in this moving memoir; the impact of their contribution is not chronicled. The author, Alison Ouellette, was and continues to be a leader in the family support movement. Her work in Pilot Parents, Extend-A-Family and Special Services At Home Provincial Coalition; her awards such as the Family
If you are interested in this new release, you can order copies through Alison’s or David’s web site. There is an order form there for you to download. http://home.cogeco.ca/~aco-web/ or http://home.cogeco.ca/~davidkyle
creatively about new
A HOME AND GOOD LIFE OF MY OWN
functioned as a
housing trust since 1997, its mission to help adults with "Autistic
live in their own homes with dignity
safety, supported by family and friends--and with self-directed
individualized funding, and infrastructure services as needed.
Other families and organizations, concerned with persons who have other special needs, are interested in following the paths pioneered by GSA, so we have compiled this 120-page guide to the various agreements and procedures, with some explanatory text.
resource that is valuable for anyone who is trying to direct their own
person-centred life, and for their families and friends.
Please click on this link for the flyer
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
announcements and comments to firstname.lastname@example.org We welcome news items,
announcements of autism events, new information,
discussion questions and comments, and accounts of experience.
Visit OAARSN's website and keep in touch through the OAARSN Listserv--send a message requesting to join to email@example.com