ONTARIO ADULT AUTISM 
RESEARCH AND SUPPORT NETWORK 
NEWS BULLETIN

OAARSN offers a rich and expanding collection of up-to-date 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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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 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.

 

OAARSN NEWS BULLETIN
29 January 2005

NEW ON OAARSN

In preparing for our conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS in late April, we offer readings on some of the key themes. One of the four workshops, to be led by noted advocate Judith Snow of Toronto, focuses on "Building supports with individuals" and the need for vulnerable people to be central in all discussions and decisions about them---“Nothing about me without me” with “deep listening” by others. The workshop will also explore “why support networks are good for our health and communities.”

We recommend the following resources on this theme:
Implementing Person-Centered Planning: Voices of Experience
By John O'Brien & Connie Lyle O'Brien, Editors. Toronto: Inclusion Press, 2002. 420 pages, paperback. ISBN 1-895418-50-X. $25.00 (A sequel to the authors’ A Little Book About Person-Centered Planning (1998).  Read our review

That vulnerable people need help with creative and imaginative ways to express their thoughts and wishes is illustrated in Meyer Shevin's nightmare scenario of how team meetings etc must seem to many vulnerable people who don’t speak (p.197):

“Imagine this: You arrive, unaccompanied, at a party you’ve been told in being held in your honor. When you get there, you find that all the others are wearing formal gowns and tuxedos—everyone but you. There us an elaborate array of food and drink, but you are allergic to everything on the buffet. Periodically, the other guests start to engage in an elaborate, intricate dance, which you have never seen before, to music you cannot hear. Hardly anyone speaks to you; eventually, someone does, but turns away before you reply. You feel increasingly helpless and ghostlike.”
We like Meyer Shevin's idea of a "communication ally" for each potentially vulnerable person who has difficulties in picking up social cues and relating to others and in expressing key thoughts and wishes.


Communication professionals will also relate to
Social Networks: A Communication Inventory for Individuals with Complex Communication Needs and their Communication Partners.

"SN is meant to link the assessment and planning processes to the outcomes sought by individuals with complex communication needs and their families (Blackstone, 2003). SN can also heighten awareness of the multidimensional challenges in AAC interventions and help practitioners better understand the similarities and differences among populations and across the age groups of people who benefit from AAC. It is also helpful in making decisions about the use of specific technologies to support the development of communicative competence over time."

This assessment and intervention planning tool includes a Manual and Inventory Booklet designed to help professionals work with family members and individuals with complex communication needs to determine the most appropriate technologies and communication strategies for communication with partners in various contexts. The Social Networks Video features five individuals with complex communication needs and their “social network” of family, friends, acquaintances, paid professionals and people in the community. Click for more details
 

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AUTISM NEWS

Rate of first recorded diagnosis of autism and other pervasive developmental disorders in United Kingdom general practice, 1988 to 2001
Report of an analysis of 1410 cases that concludes "Better ascertainment of diagnosis is likely to have contributed to the observed temporal increase in rates of diagnosis of PDD, but we cannot exclude a real increase." One of the authors is Professor Eric Fombonne of Montreal.


Researcher identifies cellular defect that may contribute to autism

New research from Columbia University Medical Center, published in the latest issue of Science, has identified for the first time how a cellular defect in neuroligin genes may contribute to autism. Neuroligins are components of synapses, which connect individual neurons in the brain. The researchers found that the loss of neuroligins perturbs the formation of neuronal connections and results in an imbalance of neuronal function.

Facilitated Communication Promoter Gets Academy Award Nomination
Douglas Biklen of Syracuse University, who promoted FC as a means of self-expression by people with autism and other disabilities, has been nominated for a documentary on autism. The 40-minute film Autism Is A World presents an inside look at autism through the eyes of 26-year-old Sue Rubin, who wrote the screenplay. The story shows the challenges Rubin overcame in dealing with autism and a false childhood diagnosis of retardation to become a highly intelligent college junior and a tireless disabled-rights activist. The film will air sometime in 2005 on CNN, and will be available for sale on DVD  and additional screenings shortly thereafter. We'll let you know.

Ground-breaking resource centre to help people with autism opened in Glasgow
Eleven staff, including clinical psychologists, speech and language therapists and several autism specialists, will be based at the new £750,000 unit which is viewed as a model for the UK. Another account of the new Glasgow Autism Resource Centre


Fayetteville fire station adds autistic volunteer
A good news story from North Carolina about
Ralph Langdon, 24, who cleans Station Nine's dayroom for two hours each week.
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ISSUES AND ADVOCACY
See also: Funding Issues--new OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSN’s main page then choose Discussion Area


Without a Trace TV Show Features Boy with Autism

Feb. 3, Thursdays 10 PM ET/PT
http://www.cbs.com/primetime/without_a_trace/
"The CBS TV hit series "Without A Trace" will feature a boy with autism on their Thursday night, February 3rd episode entitled "Volcano." The young boy bolts and runs while on a field trip from school and is lost in a New York City museum. The boy's father is called in to locate his son with tracking equipment provided by Project Lifesaver."
Project Lifesaver Executive Director Chief Gene Saunders said, "The show was an opportunity to demonstrate to parents who have special needs kids how the home tracking system works. The show will also bring awareness to the general public of the growing epidemic of Autism."
For more information on home tracking equipment or how to start Project Lifesaver in your community contact: Chief Gene Saunders, Executive Director Project Lifesaver in Chesapeake, VA at 757-546-5502


 
Are You Prepared for an Autism Emergency?
from Dennis Debbaudt's Autism Risk & Safety Newsletter – Winter 2005 edition.
His whole newsletter can be found here: ddpi@flash.net
http://www.autismriskmanagement.com
  • To ensure safety and lower risk for a child or adult with autism, parents and care providers will need to become proactive and prepare an informational handout.
  • A leading cause for for concern are children and adults who run away or wander from parents and care providers.
  • Tragically, children and adults with autism are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a child or adult who has autism.
  • Wandering can occur anywhere at anytime. The first time is often the worst time.
  • Another concern is preparation in the event that you become incapacitated or injured while caring for a person with autism at home or in the community.
  • An informational handout should be developed, copied and carried with you at all times--at home, in your car, purse or wallet. Also circulate this handout to family members, trusted neighbors, friends and co-workers. The handout will also come in handy if you are in an area other than your neighborhood and are approached by the police.
  • If wandering is a concern, contact law enforcement, fire and ambulance agencies. Ask your local 911 call center to “red flag” this information in their 911 computer data base. Dispatchers can alert patrol officers about your concerns before they arrive. When we provide law enforcement with key information before an incident occurs, we can expect better responses.
Alert your neighbors  
The behaviors and characteristics of autism have the potential to attract attention from the public. Law enforcement professionals suggest that you reach out and get to know your neighbors.
  • Decide what information to present to neighbors
  • Plan a brief visit to your neighbors
  • Introduce your child or adult or a photograph
  • Give your neighbor a simple handout with your name, address, and phone number
  • Ask them to call you immediately if they see your son or daughter outside the home
  • This approach may be a good way to avoid problems down the road and will let your neighbors:
  • Know the reason for unusual behaviors
  • Know that you are approachable
  • Have the opportunity to call you before they call 911
  • Knowing your neighbors can lead to better social interactions for your loved ones with autism.
Prevention  
If wandering is an issue for your family, consider contacting a professional locksmith, security company or home improvement professional.

Autism Emergency Contact Handout Model
  • Name of child or adult
  • Current photograph and physical description including height, weight, eye and hair color, any scars or other identifying marks Names, home, cell and pager phone numbers and addresses of parents, other caregivers and emergency contact persons
  • Sensory, medical, or dietary issues and requirements, if any
  • Inclination for elopement and any atypical behaviors or characteristics that may attract attention
  • Favorite attractions and locations where person may be found Likes, dislikes--approach and de-escalation techniques
  • Method of communication, if non-verbal: sign language, picture boards, written word ID
  • Wear jewelry, tags on clothes, printed handout card
  • Map and address guide to nearby properties with water sources and dangerous locations highlighted
  • Blueprint or drawing of home, with bedrooms of individual highlighted

Mother of autistic boy comes to the aid of police
The story behind Silent No More Communication Boards.
Web site at http://www.dol.net/~srz
The boards come in kits that cost between $5 and $15.



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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


March 4 & 5, 2005, in Ottawa

Autism Awareness Centre Presents
Jeanette McAfee, M.D. (March 4) on
Navigating the Social World
and Suzanne Murphy (March 5) on 
Autism Spectrum Disorders (ASD) - Practical Strategies and How to Use The
m
Find more and register on-line at: www.autismawarenesscentre.com
Please contact Wendy Benson at Toll Free 1-866-724-2224 or (780) 474-8355
Fax: (780) 477-8350 or (780) 447-5445 E-Mail: wendy.aaci@shaw.ca or maureen.aaci@shaw.ca


March 18, 2005, in
Novi, Michigan
Epilepsy, Autism Spectrum Disorders and Behavior
Autism Society of Michigan's Annual Spring Conference 

Information on registration coming soon.

Outcomes: Participants will--
1. understand the different seizure disorders that occur with autism and the impact on autism.
2. understand the role of seizures in challenging behavior
3. learn how seizures affect sleep disorders
4. learn practical solutions for supporting the individual with seizures and ASD.

Autism Society of Michigan has a most impressive program of other workshops and meetings in the first quarter of this year. Explore its website



Wednesday, March 30, from 7:00 in Kitchener
“My Sad is all Gone”:
Various therapeutic techniques for helping Autistic people

with Thelma Wheatley, author, teacher & parent
Kitchener Public Library, in the Schneider Room
In association with Waterloo Wellington Autism Services & Autism Society Ontario
Thelma Wheatley is described as the only Canadian parent of an autistic adult who has published a book about him. “My Sad is All Gone” was published in October 2004 and now you can meet the author and her son Julian. Thelma will speak about the specific drug protocol that helped her son control his violence and aggression, also about other helpful therapy techniques including music and art therapy.


Thursday, March 31 (evening) and Friday, April 1, in Waterloo

2005 Spring LD Conference
Learning Outside the Box
“Piece by Piece: putting the LD puzzle together”
Waterloo Recreation Complex, Waterloo, Ontario
KEYNOTE SPEAKER Thursday evening:Dr Maggie Mamen, Ph.D., C.Psych.
Friday Breakout Sessions include: Learning Styles / Multiple Intelligences; Written Expressive Issues;
Auditory Processing Challenges; Social /  Emotional Impact of LD; Sensory Integration and Motor Deficits;
Programming for the LD student
For more conference details, or to register on-line:
visit our website at www.learningoutsidethebox.ca
Or contact us at
info@learningoutsidethebox.ca


April 6-8, 2005, in Barrie

OADD 2005 Conference


The 16th annual conference on developmental disabilities will be held April 6-8, 2005 at the Kempenfelt Centre in Barrie, Ontario. Visit our conference section for information on submitting proposals for your workshop/seminar sessions and posters.


April 8 to 10, 2005, in Toronto
"Living Well: Beyond Existing"
2nd ICE conference 2005 (Independence, Community, Empowerment):
At Travelodge Hotel in Toronto, Ontario at Keele and 401.
ICE Conference Committee includes members from Ontario March of Dimes, Speaking Differently, clinicians from AAC Centres around Ontario, and AAC users. The Ontario Federation of Cerebral Palsy is sponsor.
The ICE Canada 2005 theme is "Living Well: Beyond Existing" and key topics will be:
Recreation/ Leisure/ Travel
Sexuality/ Marriage/ Dating/ Relationships
Aging with a Disability
Spirituality/ Death/ Grieving
Advocacy/ Rights/ Independence
In keeping with ICE 2002 the Town Hall Meeting will again be playing an important role. During this discussion, which is chaired by an individual who uses AAC, only those who use AAC will be allowed to speak.
In addition, on Saturday night, Speaking Differently will be performing the play Broken Speech. This play is "about how one tries to survive in a world that is primarily based on spoken word. Broken Speech is a vivid, hilarious, and insightful commentary on how one person is able to regain his once lost voice."
For more information, please check out the official ICE website at: www.iceconference.ca where you will soon be able to find email addresses related to such areas as Registration, Attendant Services, General Information, and website feedback. There will be a mailout of brochures; you can register and pay on-line by mid-February.

 
April 8-10, 2005, in Cornwall

Symposium on Raising an Adolescent/
Young Adult with an Autism Spectrum Disorder
Hosted by Autism Society Ontario's Upper Canada Chapter
Click for program
Sample of presentations:
-Secondary School Transitions for Students with Asperger’s Syndrome (Richard Hales)
-Planning for Transition to Employment, Community & Post Secondary Education (Lindsay Moir)
-Panel Discussion On Educational Issues - Please come prepared to ask YOUR questions
-ASD Students in High School - Visual Supports for Meaningful Learning  (Sheila Bell)
-Sexuality and People with Developmental Disabilities (David Hingsburger)
Registration must be received ON or BEFORE MARCH 25, 2005.
Early Bird Registration before January 21.
For brochure with all the details about the seminars, accomodations, costs and directions.
contact the Upper Canada Chapter for a brochure dkeillar@sympatico.ca


Friday, April 29, 2005 in Guelph
Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Guelph Services for the Autistic and OAARSN are taking the lead in convening a gathering of Ontario people who want and need to be creative in supporting good lives with and for adults who are vulnerable because of disability. We particularly want to encourage self-advocates, families and friends to take part.
  • Our concern is practical--how to plan and implement the elements of a good life for each person and that we can learn from each other's effective strategies and success stories.
  • Our approach is comprehensive and holistic. We hope to put our minds and imaginations around various strategies, to show the connections among them, and to help persons and families think about and choose combinations that may work for them.
  • We plan a process of collaboration in discussion and sharing resources--during the conference and also beforehand and afterwards, using the OAARSN website and other media. Highlights of keynote, workshops and poster presentations will be recorded and edited into electronic and video resources to share with people and groups who cannot attend.  Click for planning updates and conference program

May 29-31, 2005,
in London
"Creating a Community that Works for Everyone"
Community Living Ontario 2005 - 52nd Conference
and AGM
Hilton London Hotel, London, Ontario.
Contact:
Shirley Yuen, Conference Coordinator,
e-mail:
shirley@communitylivingontario.ca,
tel. 416-447-4348, ext. 226  
http://www.communitylivingontario.ca/


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BOOKS, WEBSITES AND OTHER RESOURCES


Organization for Autism Research
The annual Applied Autism Research Competition will award grants of up to $30,000 for one or two year studies. The OAR "more directly addresses the human dimensions of autism… trying to identify what can be done to address specific developmental problems now. It therefore offers the most potential to make a difference in the lives of those living with autism today." Canadians are eligible to apply. The Graduate Research Grants Program will award 10 grants totaling $15,000 to students in master´s or doctoral programs conducting studies related to autism. Click on the title for full information. The OAR has also produced a useful Parent's Guide to Research on Autism

Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior
Review by Elizabeth Abbott in The Globe and Mail 
By Temple Grandin and Catherine Johnson (2005), $36.00. Available from Parentbooks in Toronto



Autism Research Institute has a new website

Founded in 1967 by Dr Bernard Rimland and among one of the oldest organizations devoted to autism, ARI conducts research and disseminates the results, on the causes of autism and on methods of preventing, diagnosing and treating autism and other severe behavioral disorders of childhood.
1. DEFEAT AUTISM NOW! (DAN!) WEB CONFERENCE has been extended through the month of February. It includes over 30 hours of selected presentations from the DAN! April 2004 Washington DC and October 2004 Los Angeles conferences. To learn more and to subscribe, visit: www.ARIWebConference.com
2. TREATMENT SURVEY: ARI's survey of "Parent Ratings of Treatments for Autism" is being updated very soon. Please contribute your ratings at the survey at www.AutismResearchInstitute.com
3. The next Defeat Autism Now!(DAN!) conference will be in Boston on April 15-17, 2005. See www.DANConference.com
4. RECOVERED AUTISTIC CHILDREN: Historic DVD (and VHS) available from ARI: For a donation of $35 or more, ARI will send you a 58 minute video containing the momentous Recovered Autistic Children event filmed at the Los Angeles DAN! conference on Oct. 3, 2004. Film and stage star Lou Diamond Phillips interviews beautiful and socially interactive formerly autistic children and proves that recovery is possible in many children. The DVD also presents interviews with parents of recovered children, and interviews with some of the top researchers in the field including Andrew Wakefield, M.D., Jill James, Ph.D. and Richard Deth, Ph.D. Please send your donations to: Autism Research Institute, 4182 Adams Ave., San Diego, CA 92116. You can also make a donation using PayPal www.autismwebsite.com/ari/pub/paypal.htm
5. E-2 DIAGNOSTIC CHECKLIST: ARI's E-2 Diagnostic Checklist has recently been placed on the website. You can easily print out and complete the checklist, then mail it to ARI. Our staff will score the checklist and mail the results to you. There is no charge for this service.

The Autism Perspective (TAP)
“Designed as a national, quarterly and full-color publication devoted to the subject of autism spectrum differences; persons with autism and those parents and professionals that love, care for, support and educate them. The all volunteer Advisory Board is impressive, and the magazine will present a positive, upbeat and eclectic variety of perspectives!
”The magazine will deal with a variety of issues from the “here and now” of everyday life.  The first issue covers one family's marriage issues.  Dr. Greenspan writes an article from his perspective on proper assessment--how we should learn to listen to each other from a psychologist’s perspective. State Senator Speier’s perspective about autism in California.  Parents’ rights explained by California attorney advocate Valarie Vanaman.  Bill Stillman writes about how he is experiencing this world.  This is only a sampling of the content.   TAP will have a variety of articles covering many of today’s triumphs, struggles, and hope.  The magazine promises to be about options and different perspectives without taking sides.  This will be a forum for discussion for everyone in the autism community.”
Visit the TAP website for subscription information at: www.theautismperspective.org
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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.

CRY FOR HELP!
"We are experiencing crisis in our home.  This seems to repeat itself.  Last year at this time John decided he wasn't going to school and wasn't taking his meds.  His anger is getting very high again and he is taking his meds.  The school thing is a battle and because of his attitude I don't know that he's going to get passing grades this term. This is his easy term!
Last year I also had a nervous breakdown when all this took place.  I'm a single mom, I can't afford to take time off work.  HELP!
"

Please, if any OAARSN contact has worked through similar experiences or can think of helpful strategies, let us know.

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



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