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

See our archive of past OAARSN news bulletins.

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. 
 

 

NEWS BULLETIN

  18 August 2004

Call for Help
"I would like to talk with a mother if possible whose son with Asperger's in his early 20's took his own life like my son did. There isn't anyone who has been through this with Asperger's we know of. He was doing so well, he was happy, making future plans, working at a job he wanted then gone. We only knew he had Aspergers for 3 years and there were many hurdles he overcame.
There are so many questions that can never be answered: Why didn't we push for help harder? We thought we knew Asperger's syndrome. Maybe we should have tried to see if there was more to know. Were there signs we should have seen but, because we didn't know as much as we should have about Aspergers, we didn't see them? When we thought he was doing more things on his own because he was overcoming his Asperger's, these were the signs he was unstable?
If you know anyone who would be able to correspond I would appreciate it."

If you can help, please reply first to gbloomfi@uoguelph.ca, and we'll put you in touch.


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New Content on the OAARSN Site


Adult Autism Issues in Waterloo-Wellington
The latest issue --No. 26, August 2004-- of this newsletter has been posted.

Guelph conference on CREATIVE SUPPORTS FOR VULNERABLE ADULTS
Friday, April 29, 2005 in Guelph (at Ignatius College).  Click for planning updates

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General Autism News

US brain scientists discover biological basis of autism
Using functional magnetic resonance imaging (fMRI) scans, the researchers have found numerous abnormalities in the activity of brains of people with normal IQs who have autism. The new findings indicate a deficiency in the coordination among brain areas. The results converge with previous findings of white matter abnormalities in autism. (White matter consists of the "cables" that connect the various parts of the brain to each other). The new findings led the researchers to propose a new theory of the basis of autism, called underconnectivity theory, which holds that autism is a system-wide brain disorder that limits the coordination and integration among brain areas. This theory helps explain a paradox of autism: Some people with autism have normal or even superior skills in some areas, while many other types of thinking are disordered. The team's study will be published in the August edition of the British journal Brain and is available online at www.brain.oupjournals.org
Another account: Autism seen as problem
of connections in brains


Canadian scientific team applauds move away from thimerosal in vaccines
Prof Graham George, of the University of Saskatchewan, is studying the fate of mercury in the body, since the toxicity of organic compounds of this metal critically depends on their molecular form and other factors, such as the presence of selenium. Advances in x-ray technology have enabled Prof George's team to collect information that has eluded scientists in the past. He said: "It shocked me when I found out [thimerosal] is in vaccines. If you wanted to choose something to put into a vaccine, and you were doing it fresh, it would be the last thing. It is known to be neurotoxic and would never get approval for drug use these days. It is only because it has been 'grandfathered in' since the 1930s that it is in use at all."

Today's Parent for September 2004 has a focus on living with autism
Look up other stories in this issue, including an interview with Dr Peter Szatmari.
Here are links to some of the stories about autism on the site:
Solitary Refinement
Alone with my thoughts
Autistic symptoms in nephew

Your Next Patient Has Autism
A trifold brochure developed for health professionals who occasionally provide services for children on the autistic spectrum.Physical assessment, diagnostic imaging, and a variety of other interventions – both invasive and “non-invasive” – may induce extreme fear and anxiety in autistic children. Their behavioral responses to such experiences often interfere with needed care, and increase the risk of physical and/or psychic trauma. Produced by the North Shore Long Island Jewish Health System.

Service dog accompanies 6-yr-old to camp and school
A good story from Brampton.

Critical shortage of support services for parents raising children with autism
An report from Australia that will resonate just about everywhere.

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ISSUES AND ADVOCACY

NEWS of MCSS Consultations
The Ministry of Community and Social Services has set up a Steering Committee to advise the Minister on how to proceed with her "transformation" of Developmental Services in Ontario. This very important process will profoundly affect developmental services for many years to come. A Steering Committee is to create a "high level paper" by early September, as the basis for broad public consultations to be completed by Feb/March 2005.  

Advocacy organizations are concerned that the Steering Group is composed almost entirely of service providers, and are requesting that families and self-advocates be informed of the process and have at least equal representation at the table. There is nothing on the MCSS website about this very important process which should be transparent to those who will have to live with its decision.
Read more about these efforts, especially by the United Family Congress
Efforts to be represented in MCSS discussions of new directions
Another story 

For further information about the consultation process, contact Deputy Minister Kevin Costante, or Assistant Deputy Minister Andrea Maurice.

Kevin Costante, Deputy Minister  
Ministry of Community and Social Services
Hepburn Block
6th Floor
80 Grosvenor St
Toronto ON M7A 1E9
General Inquiry: 416-325-5225
Fax: 416-325-5240

Andrea Maurice, Assistant Deputy Minister, 416-325-3592
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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

Only new announcements are listed here. For previously announced events, opportunities and projects that are still current, please click on this link

September 7-9, 2004, in Toronto, 8:30am to 5 pm
Workshop #1: Introduction to Verbal Behavior Teaching Communication Skills To Children with Autism and Other Developmental Disabilities
Presented by Vincent J. Carbone, Ed.D., Board Certified Behavior Analyst
This workshop focuses on the behavioral approach to teaching communication skills to children with autism and other developmental disabilities.
The approach is based on B.F. Skinner's analysis of verbal behavior and the  research of Michael, Sundberg, Partington, and others. Participants in this workshop learn (1) to conduct a Behavioral Language Assessment, (2) to  select the most appropriate form of communication for a child (vocal, signing, pointing to or exchanging pictures, or activating an augmentative device), and (3) to select the communication responses and supporting skills that should be taught first. The workshop includes the recommended teaching procedures for those children who have no formal communication skills to those that are near conversational speakers. The presenter also describesand demonstrates errorless teaching, specific quick-transfer (prompting
and fading) procedures, and the use of both discrete trial training in the natural environment and during intensive teaching session. Many video tape demonstrations are provided to illustrate the methods to increase spontaneous language and to develop conversational skills.
To register: contact Gerry Bernicky @ 
gerald.bernicky@surreyplace.on.caor   or call (416)925-5141, ext 442


September 17, 9-4pm, in Sarnia
Circles of Support--Thinking Outside the Box
A workshop led by Peggy Corrigan-Dench and Dale Munro of Regional Support Associates
Click for flyer and to register

September 28 and 29, in Windsor

MAKING CITIZENSHIP REAL: GAINING CONFIDENCE FOR THE JOURNEY
a workshop about "living a real life with the rights and responsibilities of citizens, versus fitting into structured programs and schedules designed by others".
Facilitated by Judith Snow and Martha Leary and hosted by the Windsor-Essex Family Network & Resource Centre.
See full details in flyer: Inside page
Outside page

October 1, 2004 deadline:
The Research Committee of Autism Society Ontario is hosting a poster session on November 11 & 12, 2004 during the Geneva Centre for Autism 2004 International Symposium. See details on how to make submissions to ASO by the October 1, 2004 deadline. These will also be posted on the ASO website. The Geneva Centre International Symposium is planned for November 10, 11, 12, 2004 at the Metro Toronto Convention Centre. The Symposium 2004 brochure has been mailed out and is also available at www.autism.net

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AUTISM BOOKS AND OTHER RESOURCES


Into the Mind of the Autistic

New York Times review of these two books:
"Through the Glass Wall: Journeys into the Closed-Off Worlds of the Autistic" by Dr. Howard Buten. Bantam Books, $23.95.
"Asperger Syndrome and Your Child: A Parent's Guide" by Dr. Michael D. Powers with Janet Poland. Quill (Harper/Collins), $14.95.


Announcing the Autism Spectrum Quarterly magazine



Parentbooks List on Autism Spectrum Disorders

Currently featured titles include:

The Different Shades of Autism: the Screening and Diagnosis of Autistic Spectrum Disorders.
60 minute video from Ahead with Autism, $36.95


Growing Up with Autism or Aspergers.
Autism Society of Ontario, 120 minute VHS video, $15.00


Through the Glass Wall: Journeys into the Closed-Off Worlds of the Autistic.
Howard Buten, $35.95


Pathways to Play! Combining Sensory Integration and Integrated Play Groups.
Glenda Fuge & Rebecca Berry, $42.95


Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum.
Stephen Shore, Editor. Foreword by Temple Grandin, $31.95

Parent to Parent: Information and Inspiration for Parents Dealing with Autism or Asperger's Syndrome. Ann Boushéy, $28.95

Can I Tell You About Asperger Syndrome? A Guide for Friends and Family.
Jude Welton, $13.95

Adam, a young boy with Asperger Syndrome, invites young readers to learn about AS from his perspective.

A Special Kind of Brain: Living with Nonverbal Learning Disability.
Nancy Russell Burger, $28.95

Communicating Partners: Developmental Guides for Professionals and Parents.
James D. MacDonald, $39.95

Artism — Art by Those with Autism.
Karen Simmons & Bernice Pelletier, $33.95

Tasks Galore for the Real World.
Kathy Hearsey, Laurie Eckenrode & Pat Fennell, $55.95

Asperger Syndrome, Adolescence and Identity: Looking Beyond the Label.
Harvey Molloy & Latika Vasil, $28.95

Based on extensive interviews with teenagers diagnosed with Asperger Syndrome, the six life stories in this book present a fascinating look at how AS has shaped their growing identities.

Just Take a Bite: Easy, Effective Answers to Food Aversions and Eating Challenges.
Lori Ernsperger & Tania Stegen-Hanson, $35.95

Demystifying Autism Spectrum Disorders: a Guide to Diagnosis for Parents and Professionals.
Carolyn Thorwarth Bruey, $26.95

How to Find Work that Works for People with Asperger Syndrome.
Gail Hawkins, $32.95
"For those who want to help somebody with Asperger Syndrome find and keep a satisfying job, this book is a vital tool. Gail Hawkins guides readers through the entire process of gaining employment, from building a supportive team, identifying and addressing workplace challenges, to securing an appropriate post. Including practical tips on topics such as finding potential employers and creating a dazzling CV, as well as sensitive advice on assessing when somebody is ready for work, and how, when and where to disclose a disability to an employer, Hawkins' well-tested approach aims to provide all the information needed for a fast, realistic, and successful path to fulfilling employment".


An Asperger Dictionary of Everyday Expressions.
Ian Stuart-Hamilton, $28.95
"Addressing an important aspect of social communication for people with Asperger Syndrome, who use direct, precise language and 'take things literally', this dictionary of idiomatic expressions aims to dispel any confusion that arises from the misinterpretation of language. This book provides explanations of over 5,000 idiomatic expressions plus a guide to their politeness level. Each expression is accompanied by a clear explanation of its meaning and when and how it might be used. The expressions are taken from British and American English, with some Australian expressions included as well. Although the book is primarily intended for people with Asperger Syndrome, it will be useful for anyone who finds problems understanding idiomatic and colloquial English. An essential resource and an informative read, this dictionary will assist in a wide range of situations".

When My Autism Gets Too Big! A Relaxation Book for Children with Autism Spectrum Disorders. Kari Dunn Buron, forward by Brenda Smith Myles, $20.95.
"Losing control" can cause major problems for children with ASD. Used in conjunction with "The Incredible 5-Point Scale", When My Autism Gets Too Big! is delightfully illustrated and offers simple strategies for managing emotions as children react to events in their daily lives. A wonderful tool for helping children with ASD to enjoy themselves in a relaxed and self-confident way.

Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are a Sensory Defensive in an Overstimulating World. Sharon Heller, Ph.D., $21.95
Heller explains the crucial role of sensory processing in understanding behavior, explores the differences between sensory defensiveness and common hypersensitivity, and offers strategies and activities to minimize sensory overstimulation and to increase calmness and alertness.

Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism. Mary Wrobel, $35.95
"…specifically designed to address the health and safety needs of students aged five and up with autism spectrum disorders. Though a unique combination of social stories and easy-to-understand activities, Whether you're concerned about abuse or just want bath time and doctor's visits to be amore pleasant experience, this book is must-read for those who love and guide students with disabilities."

Coping with Stress Through Picture Rehearsal: A How-to Manual for Working with Individuals with Autism and Developmental Disabilities. June Groden, Ph.D. et al, Illustrations by Eric Southworth, $ 59.95.
Groden says: "Picture rehearsal is an instructional strategy that uses repeated practice of a sequence of behaviors by presenting the sequence to the individual in the form of pictures and accompanying script. This procedure combines principles of learning theory and the technology of visual supports… (allowing)…the learner to experience repeated practice of successful adaptive behavior with immediate reinforcement each time…" Groden contends that individuals with special needs are particularly vulnerable to stress and anxiety which "…functionally relate (to) many of the behaviors that are typically associated with autism…" This 275 page, spiral-bound manual includes a Stress Survey Schedule with definitions, models of scenes, "…a menu of reinforcers, and a how-to section for creating personalized picture rehearsal scenes."

Perfect Targets—Asperger Syndrome and Bullying: Practical Solutions for Surviving the Social World. Rebekah Heinrichs, (Foreword by Brenda Smith Myles), $31.95. "…provides helpful guidelines for administrators, teachers and parents. The tools are specifically designed/adapted for the challenges faced by students with AS."

Souls—Beneath and Beyond Autism
Concept and Photography by Thomas Balsamo, Written by Sharon Rosenbloom, $25.95
Therapeutic, redemptive…luminous photographs, transformative text.

Souls—Beneath and Beyond Autism DVD, music inspired by the book. $19.95

The Social Skills Picture Book: Teaching Play, Emotion, and Communication to Children with Autism. Dr. Jed Baker, $57.95
Using photographs with speech balloons, and "social stories" style prompts, Jed Baker has created a "…dynamic teaching tool that engages the attention and motivation of students who need a little extra help learning appropriate social skills…" Part one includes discussion of the importance of visual supports, an overview of social skills teaching methods…discrete trial, incidental teaching, cognitive picture rehearsal, social stories, structured learning…and instructions on creating your own social skills picture stories. Part two is subdivided into communication-related skills, play-related skills and emotion-related skills. Over 200 pages.

What Does It Mean To Me? A Workbook Explaining Self Awareness and Life Lessons to the Child or Youth with High Functioning Autism or Aspergers. Catherine Faherty.
A curriculum of "structured teaching exercises for home and school" in 12 chapters, each of which is divided into a workbook for students, and strategies for parents and teachers. Chapter headings include Ways of Thinking (theory of mind), The Sensory Experience, Artistic Talent, People, Understanding (non-verbal learning disabilities), Thoughts, Communication, School, Friends, and Feeling Upset. $55.95

Asperger Syndrome and Sensory Issues: Practical Solutions for Making Sense of the World. Brenda Smith Myles et al. This parent and educator-friendly, example-packed resource is the "first book specifically written on sensory issues in individuals with Asperger Syndrome." Sensory icons, Ms Tactile, Mr Vestibular, Ms Proprioperception, Ms Visual, Ms Auditory, Mr. Gustatory, and Ms Olfactory help readers navigate, and tables, charts, and profiles make this an easy-access guide. There is a full chapter on assessment, 30 pages of intervention tables, and an actual, illustrative case history. $31.95

Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. Brenda Smith Myles & Jack Southwick. The authors, associates at the Autism Resource Center at the University of Kansas Medical Center, begin with an overview of the characteristics of Asperger Syndrome which may impact behavior in various domains: Cognition, (with particular attention to theory of mind deficits,) language and socialization, visual processing and sensory issues. In Chapter Two, The Rage Cycle and Functional Assessment of Behaviors in the Cycle, the three stages of rage are described, strategies for early intervention are outlined, the process of functional assessment is detailed, and a variety of assessment instruments are reproduced.

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FROM THE FRONT LINES: 

CALLING FOR HELP AND SHARING EXPERIENCES


Poetry and Peacemaking   
Brian Henson of Brantford is a member of several email lists and discussion groups. He encountered a fair amount of bickering and verbal abuse among members of one group. Is this more common among people with ASD on the Internet than among neurotypical people? Brian felt moved to write this poem. When he sent it to that discussion group, some of those who had seemed most strident in their comments were most appreciative of Brian's verse. That prompted him to the reflections that follow.

Modulation

To attack, or defend....?
   'Tis seems there's no end,
Where each side digs right in,
   And the wars then begin.
Wars of words, that is,
   And the question: Who's biz?
Each side knows that it's right,
   Like the day and the night...
We dare not say a word,
   Lest we be salvaged and "cured"'
For our viewpoint 'bout life;
   Can be sharp as a knife.
Then, just how to advocate?
   We are already late,
For the assertive decree
   'Gainst the fire of the free.
But each one of us gains
   From the peril and pains,
As experience teaches
   What no moral preaches:
That it's not "them" or "we",
   But individuality
That sustains each one's goals
   'Gainst the rocks and the rolls
That the person must bear,
   Wee bit here, wee bit there,
But it all adds up fast
   As perseverences last
Through the storms that each dares
   To survive all the cares,
And the tempers that flare,
   When one hasn't a prayer....
                  -Brian Henson©2004



Is that the role of the poet--to modulate (in the definition of "to keep a proper measure or proportion: temper" [Merriam-Webster]) in the workings of the human environment? Is that why people renounce poetry as just an "art", but study and work through prose in everything else, from legal papers to United Nations resolutions? Is the role of the poet, as seen in earlier times, both ancient and medieval, been lost in modern times, as people could not get "deep enough" in their thinking to see the role of the poet and the place the poet has in human understanding of diversification and modulation of these diversities in human nature?

The songwriter has, in many ways, replaced the words of the poet; but the efforts of the songwriter are often too short or too superficial to draw people into the deeper aspects of what it means to be human.

Music, itself, was a valiant attempt to cross the lines of language communication, but could not be "read" by many people in many cultures beyond the culture where it was composed.

This left the poet the job of both getting the message of human nature out to others who would see only the surface, and show them that there are many areas of understanding and depth far below the surface of human existence.

It's no surprise, then, that poetry still has a calling in this war-fraught ultra-technology of a world that we live in: people turn to poetry to uncover vast areas of their lives that cannot be seen or felt any other way; areas that are sheer contradictions in prose, but are revealing paradoxes in poetry; areas that are too "rational" in everyday jargon, but are seen beyond the horizon by the poets of any period in history.

News about adults with autism is usually negative. OAARSN receives 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 problems and your success stories, if you think others might help or benefit.If you wish, we will not publish 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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