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.

 

NEWS BULLETIN
4 August 2003

OAARSN NEWS AND COMMENT

Please note the wealth of news, announcements and other links in our weekly OAARSN News Bulletins that are archived on our website. Click for the list of earlier OAARSN bulletins
and find the most recent: 
June 19, 2003
June 29, 2003
July 12, 2003
July 21, 2003
July 28, 2003

Adults and their families in Waterloo-Wellingon-Dufferin region of southern Ontario:
Click for the latest  ASPIRE update

______________________________________________________________________________________
 

AUTISM IN THE NEWS

CANADIAN NEWS

New Brunswick parents protest holding of autistic man
A week ago we posted this news item and appealed for support on a petition to the Department of Family and Community Services to release a 21-year-old man who was ordered placed in Centracare. Thanks to all who responded. We've received this update.
"..... the petition was presented to the Legislature this week and a motion has been tabled for the immediate release of Waleed Arif from Centracare. Waleed's father, Mohammad was deeply touched by all the response he got from Ontario ..............  Apparently years ago he did some graduate studies in Guelph and has fond memories of the people.  It really raised his spirits and I thank you and all your members for their support.  Together we WILL change the world!"

Canadian-born youth with autism finally admitted to the US
A success story of Jeffrey, who was born in Ontario in 1984 and immigrated to North Carolina in 1995 with his family. In June 2003, Jeffrey's parents and two older brothers were sworn in as US citizens. Jeffrey was not because he was autistic and non-verbal and could not swear to the oath. One of several news stories about successful advocacy to grant Jeffrey US citizenship. 
 

GENERAL AUTISM NEWS

My Family And Autism
BBC2 aired a remarkable program on Wednesday 30 July 2003, 21:00 - 23:00. Several OAARSN members have asked how to learn more about it. 
Jacqui Jackson of Blackpool in England has four sons, and all of them have a form of autism. In this film, 14-year-old Luke tells us about his family and living with the condition. Luke has been bullied and called a freak, but he is proud of what he is and believes that his autism has given him talents that others lack. He is determined to explain to the "neurologically typical" that autism does not prevent him from being a normal person. Luke is the author of Freaks, Geeks and Asperger Syndrome published last year by Jessica Kingsley. For Jacqui, a single mother who also has three teenage daughters, the challenges of her large and demanding family are many, including the relentless search for anything which may improve her sons' lives - a special diet, a consultation with a research optician and a visit to an educational psychologist. 
Lisa Blakemore-Brown, the educational psychologist shown in the program, is a member of the OAARSN network. She writes: "I think my contribution matters as it shows just how hard it is for parents to get the help and advice they need for their children and that there are very few
professionals now free enough to do comprehensive and honest assessments - especially if the child seems to have multiple diagnoses. In these cases - the majority in my view - they can end up with none at all as the establishment is forced to not move forward scientifically but instead to restrict diagnoses to the strict Kanner criteria or the stereotypical Asperger Syndrome. Even then, arguments will rage."
Click on this BBC site for more about the Jackson family, including a transcript of the call-in questions and answers. We understand that a film of the show may be added. You may need to search for "autism" or "Jackson family."
Article in the Glasgow Herald
Gareth McLean's review in The Guardian
Story in The Independent
Charlotte Moore in The Guardian about Jacqui Jackson: 'The amount of adult time I have is nil." 
Why my autism is a gift Luke Jackson explains on the BBC website.
Link to other BBC documentaries on autism
 

Families of Autism: A pair of good stories from central California:
Life with Cameron How parents cope
A day with Jay Adult life
 

Nine fellow-students charged with murder of Japanese man with autism
Nozomu Shinozaki, 22, from Yokohama was killed on February 26, during an attack at the Columbus Academy for disturbed Japanese teenagers in west Auckland, New Zealand. The shocking murder has raised questions about how an unlicensed and unsupervised educational institution was set up without the knowledge of local authorities.

Summer camp on Pacific island of Guam

Sounds and mind Special auditory training shows promise in helping `rewire' children's brains

Music instruction helps verbal memory

ONLINE: IT offers help for social phobias

______________________________________________________________________________________________
 

ANNOUNCEMENTS OF EVENTS OR SPECIAL PROJECTS

See details of more events on OAARSN Bulletin Board and Calendar, and our archive of past OAARSN news bulletins.

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 
 Please Do Not Send Files Or Brochure Attachments
 

new announcement

An Invitation to Mothers of Children with Special Needs
We would like to invite you to share your thoughts and experiences as the mother of a child with special needs. We are Amy Baskin and Heather Fawcett, two mothers of children with ASD (Autism Spectrum Disorder.) You may have seen Amyís articles in magazines such as Todayís Parent, Homemakerís, Cottage Life and Education Today. Many of her articles deal with issues faced by families who have children with special needs. Heather co-facilitates a support group for parents of children with Asperger Syndrome and advocates for special needs in her community. 

We are writing a book with the working title From Struggle to Strength: How Mothering a Child With Special Needs Transforms Your Life that will be published by Woodbine House in 2005. While most books about disability focus on the needs of children, none examines the lives of their mothers. We will explore how having a child with a disability changes every aspect of a womanís lifeóincluding career, daily experiences, relationships, worldview, and self-fulfillment. 
Our book will provide advice backed by research and mothersí experiences to support mothers in maintaining their own identity, dreams and professional goals while parenting a special needs child. We hope to gather the wisdom and experiences of women like you. 

We have devised some questions that pertain to our Mothers and Work chapter. Some questions deal with mothers in the workforce; others apply to all mothers. If we decide to use your response, we may quote it in its entirety or edit it for brevity. To maintain confidentiality, we will change all names Also, we will change any information that might be identifying to ensure your privacy. 

See the copy of our questionnaire below. Also find more information on Amy's website. If you have any further questions, please email one of us. Thanks so much for your part in making this book possible. Together we can make the lives of mothers with special needs children easier.  Itís time for all of us to have a voice. 

Heather and Amy

Questionnaire: Your Occupation and Your Special Needs Child 

Part 1: Work/Education Background
What is your current occupation (list all that are applicable): full-time worker, part-time worker, casual worker (short term or sporadic), at-home paid worker (includes home business), volunteer, student, stay-at-home mother, other? 

What is your level of education? In what area? Have you taken additional diplomas or training to prepare you for a specific kind of work? 

Part 2: Workplace Participation
Please answer these questions if you are currently or were in the past employed outside the home while raising your child with special needs. 

  1. What kind of work do/did you do? Is/Was it fulfilling? 

  2. Because of your child's special needs, have you had to give up your work or limit your hours? Have you returned to school to upgrade your skills or started back at a lower-paying job? 

  3. How do you feel about the changes you've had to make? How has it changed your view of your work? Your view of yourself? Do you feel held back, has your career suffered, or are you satisfied? Why? 

  4. Have you ever held a job that is unfulfilling, uninteresting or low paying because of the health insurance benefits it provides for your child? Can you describe this job? What would happen to these health benefits if you lost this job? What have you done to make this challenging work situation more tolerable? 

  5. Does/did your workplace have family friendly policies such as flex-time, telecommuting, extended leave etc? Please describe. Have you been successful in negotiating any of these? If so, what advice do you give other mothers in doing the same? 

  6. How do you hold on to a job and spend the time required to arrange therapies, treatment, school services etc. for your child? 

  7. How supportive have your supervisors or co-workers been in light of your situation? 

  8. What advice would you give to mothers who have special needs children and want to continue to be employed outside the home? 

  Part 3: Other Occupations 
  Answer these questions if you are self-employed, work only casually or sporadically, go to school (full or part-time), volunteer or stay home full-time to look after your child. 
Note: If you filled out Part 2, Part 3 may also be applicable-for example, you may work full-or part-time and also volunteer or go to school. 

  1. Are you or have you ever in the past been self-employed? If so, what are the advantages or disadvantages with respect to parenting a special needs child? How do you hold on to a job and spend the time required to arrange therapies, treatment, school services etc. for your child? 

  2. Do you do volunteer work? If so, please describe. How does volunteering benefit you? 

  3. If you go to school, how does parenting your special needs child present challenges to being a student? Are there ways in which parenting your child benefits your life as a student? How? 

  4. Are you planning to re-enter the workforce? What are you doing now to make that possible? Have you considered options other than working for a company full-time- such as part-time work or starting your own business? Please describe. If you are planning to work outside the home, what benefits or workplace characteristics will you look for? 

  5. If you are at home full-time, what are your biggest challenges? Your success stories? How do you arrange breaks/time out for yourself?  What kinds of things do you like to do in your "time out?" Are you satisfied with your stay-at-home role or has being at home eroded your self-esteem? 

  6. Are you planning to remain at home indefinitely? If so, is this by choice or because of the support your child requires? How do you feel about this decision? 

Part 4: Childcare 
lease answer the following questions about childcare (whether or not you are employed outside the home.) 

  1. List the types of childcare you have used for your special needs child (e.g., childcare centre, home caregiver, relatives, nursery school, nanny, au pair, before/after school care, summer programs, babysitters, etc.) What kinds of caregiving have worked best for your situation? Why? 

  2. Have you and your partner used shiftwork to accommodate your child's needs? Explain how effective this was. 

  3. Describe the reaction of caregivers to your child's special needs? For example, did you meet resistance or were they eager to take your child on. If you met resistance, were you able to overcome it. If so, how? 

  4. Did caregivers require additional training to meet your child's needs? If so, how did you arrange and fund training? 

  5. If your child needs one-to-one support in a childcare centre or nursery school, how was this arranged/funded? Were you/the organization able to access a grant? If so, what kind and from where? 

  6. How did you find childcare for your child? Any advice for other moms looking for appropriate childcare (respite, summer, occasional, part-time or full-time)? 

Part 5: Contact Information 
  Please fill out the information below so we can contact you if required. While we will use all survey responses as background research for our book, we may decide to include your specific response (details will be changed.) If so, we will send you a consent form. All information will be held in confidence. Thanks so much for your insights and for your time. 

  Your Name: 

  Age: 

  Marital Status: 

  Address: 

  Telephone: 

  Email Address: 

  Child's Name: 

  Child's Age: 

  Child's Nature of Disability/Condition: 

  Where did you hear about our survey?
 

July-August 2003
CYCLE FOR AUTISM : Help Solve the Puzzle 
John Keating and Luc Vandeermeeren, both fathers of children with Autism Spectrum Disorders (ASD), are halfway through their bicycle marathon from one end of Canada to the other. They began the cycle in Vancouver, British Columbia and will end in Halifax.  The goal is to promote awareness of Autism Spectrum Disorders (ASD) and raise $1,000,000 in Canada for ASD research. Fundraising events in various cities across Canada will also increase public awareness. Please click for the Cycle for Autism website to find out about local events in Ontario cities and encourage your family and friends to get involved in their own communities. Information can also be found on the ASO website under What's New? www.autismsociety.on.ca

Kerry's Place Autism Services: Workshops in Central West Region
July-December 2003  Click for more information about all these events
Events are free and most will be held in the KPAS Resource Centre in Brampton, unless otherwise stated.

ASO Wellington Chapter announces
Wednesday 27 August: Family Fun Day at Sportsworld Waterpad, from 2 pm.
Call (519) 822-0279 for more information and to reserve tickets.

The McMurray A.R.T.S. Center & Autism Arts are aware of the many individuals throughout the world dedicated to improving the lives of individuals who are affected by an Autism Spectrum Disorder. These advocacy challenges include increasing awareness and understanding of this disorder to the broader community, creating more opportunities in research and medical treatments, and increasing the availability of educational and community based supports. In assuring that individuals affected by this disorder can have the best possible opportunities to achieve a fulfilling life, conferences offer an opportunity where the communications among parents, educational, and medical advocates can secure improved treatment options and hopefully, one day find a cure. 
To show our appreciation of the passionate endeavors of advocates throughout the world, we are initiating a special contest -- the Autism Arts Conference Connection (AACC), where winners may select the conference they wish to attend. DEADLINE: September 1, 2003 [no cost for submission] 
http://www.autismarts.com

Guelph Services for the Autistic announces PATH workshop
Tuesday, September 9 in Guelph
PATH workshop for family representatives, to explain how a facilitated exercise in PATH: Planning Alternative Tomorrows with Hope can help families, with their sons or daughters with autism and their friends, to plan a good life now and a more secure future. More information may be found on the  ASPIRE page
  __________________________________________________________________________________________________

ISSUES AND ADVOCACY

See also: Funding Issues--in OAARSN Discussion Boards and Topics. Press the Communications bar on OAARSNís main page then choose Discussion Area

Nancy Cherry's campaign to find or develop a tracking device system for Ontario persons with ASD
Nancy, Waterloo advocate and mother of two teenagers with special needs, invites other parents and advocates to join her efforts. This story from FamilyNet.

__________________________________________________________________________________________

HELPFUL RESOURCES

BBB Autism Support Network features the serious subject of physical restraint.

Martha Kate Downey's website
includes information about several books and papers on aspects of Asperger Syndrome, High-Functioning Autism and PDDNOS. Her books include TAP DANCING in the night, If you've ever wanted to crawl in the closet with an OREO... and What Do I Do About Hitting? 
There are also pages of tips and strategies on various topics, including homeschooling. 

__________________________________________________________________________________________________

FROM THE FRONT LINES: 
CALLING FOR HELP AND SHARING EXPERIENCES

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.

Call for Help with Toilet Training Advice
"I wanted to ask you if you have any advice for toilet training a non verbal child.  We have been  struggling with this for so long now.  I've had several agencies come in to try and help with not much success. I've read everything I can get my hands on regarding how to train a child with autism, but have met with very minimal success."
Please reply to ebloomfi@uoguelph.ca

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

__________________________________________________________________________
 

{return to the OAARSN Bulletin Board}