Adults on the Autism Spectrum - Autism Ontario

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The AutismnewslinkChapter Presidents of ASOBrant & CountyClifford Gowan 519-759-8891CambridgeStacey Del Fabbro 519-653-8056Chatham-KentElizabeth Carnegie 519-358-1823DufferinKim Armstrong 519-941-8863DurhamLeah Myers 1-866-495-4680Grey/BruceJosephine Hutton 519-371-8441KingstonRob Rowe613-546.6613X388HaltonChuck LearnCecila Vespa 905-631-1233Hamilton-WentworthSherri Houston 905-547-7156Huron PerthKim Souch877-818-8867X277LondonMarti Lussier 519-685-8702Metro TorontoLaurie Pearce 416-489-0702Niagara RegionFlavia Orvitz 905-682-2776North Bay & AreaYvette Bellefeuille 705-472-6807OttawaMargaret Buist 613-230-6305Region d’OttawaHuguette Boisvert-Secretary 613-722-2482Bernard DelislePeelPeterboroughBeverly Randall 705-748-4793Renfrew CountyDiane Ferguson-Osterholm 613-687-4301Sarnia/LambtonDan Fentie 519-332-0333Sault Ste. MarieKim Krumins 705-256-5302SimcoeHelen Aitken705-326-2214X251Sudbury & DistrictSunset CountryKim Cariou 807-548-4926Thunder Bay & DistrictMichelle Murdoch-Gibson 807-622-9713Upper CanadaDarlene Richards 613-774-4822Waterloo CountyLaura CoughlinSarah Cameron 519-742-1414West NipissingBill Gingras 705-753-5326Wellington CountyMarlene Klimkosz 519-993-6699Windsor/EssexAlex Meyer 519-250-1893York RegionCenza Newton 905-780-1590Autism Society Ontario is a registered charitable non-profit organization(#11924 8789 RR0001).Our Vision: Acceptance and opportunities for all individuals withAutism Spectrum Disorders (ASD). Our Mission: To ensure that eachindividual with Autism Spectrum Disorder is provided the means toachieve quality of life as a respected member of society. The AutismNewslink is published four times per year. Subscription to The AutismNewslink is included with ASO membership. Newslink welcomescontributions from its readers. Send your articles, reviews, letters,comments, announcements, etc., to Margaret Spoelstra, NewslinkEditor. Inclusions of information not directly related to ASO are forinformation only and individuals, events, therapies, treatments, etc.,are not necessarily endorsed by ASO.Autism Society Ontario1179A King Street West, Suite 004Toronto, ON M6K 3C5Phone: 416-246-9592Fax: 416-246-9417mail@autismsociety.on.ca6An Interview withPam, by AndreaSwanson14Epilepsy inAutism, by LyndaBeedham12Inch by Inchby Matt McDonald,with support fromPaul Baines13Jim’s Story,Continuedby Jeanette HoldenOn the CoverThe cover is a partial photo of a painting entitled “Keeping up Appearances” by PEI artist SandiKomst. The painting sits on the desk of ASO Executive Director, Margaret Spoelstra.Other featuresJennifer’s Story, by Marilyn AtkinsPlanning for a Successful Transition to Adult Life, by Paul Van de LaarNeeds Analysis for Secondary Students in Transition, by Patricia GallinClinical Services for <strong>Adults</strong> with Asperger Syndrome, by J. Dale Munro and Dr. Lillian BurkeWhat a Difference Friendship Makes!, by Nicole BeattyThe Ontario Adult Autism Research and Support Network,by Elizabeth and Gerald BloomfieldAre You Prepared for an Autism Emergency?, by Karyn DumbleTips for Parents and Educators, by Kathryn EverestOntario Human Rights Commission Presentation to ASO, by Lisa WilsonPoemsI Am Building a Bridge, by Elsbeth DodmanEscalated Argument, by Sebastian Murdoch-GibsonOde to a Planned Child, by Maureen MuellerBook ReviewsThe Road Trip—Life with Autism, by Gloria Pearson-Vasey and J. Kevin Vasey,Reviewed by Amy BaskinAl Capone Does My Shirts, by Gennifer Choldenko,Reviews by Aldrin Balisi/Ohmar Rivera and Alexander OrvitzWhat’s not in this issue...Space constraints in this issue did not allow us to print two excellent articlesco-authored by the director of Kerry’s Place Autism Services, Glenn Rampton,and senior staff member, Gail Jones. The articles can be found in theirentirety on the Kerry’s Place Autism Services website at www.kerrysplace.com. The titles are Lessons Learned in Supporting Individuals with Autistic Spectrumdisorder with Complex Support Needs and Some Insights in Understandingthe Support Requirements of Persons Living With Autism Spectrum Disorder.Attention Members/Subscribers: We often reference websites or e-mail addresses in articles toallow you to obtain additional information. We recognize that not everyone has the ability to makeconnections through the internet. If you require additional information regarding a particulararticle or advertisement, please contact your local ASO chapter for assistance.ASO Newslink Editor89101116192020231617232122Editing, design and printing services, GEPM Group Inc. www.gepmgroup.com
upfrontDear ASO Membership:This issue marks the first occasion thatASO’s Newslink has been dedicatedprimarily to the topic of adults on theautism spectrum in Ontario. Certainly it isunderstandable that much media attentionabout autism is focused on matters that affectchildren, since all our readers know intimately about the impactof those early years. One can’t help wonder about the focus of thatattention considering that people with ASD live out most of theirlives in their adult years. Although we share a variety of viewpointsin this issue, the limited research we have about adults with autismand Aspergers does not paint a rosy picture.First of all, where are they? Even without accurate numbersand locations, studies already confirm that the majority of adultswith autism live at home with their parents, who have their ownchallenges related to the aging process. At ASO, we observe thatparents of adult children tend not to come out to support andinformation meetings any longer. When we ask why, they stopand slightly shift the position of their bodies as they organize theirthoughts. Their responses reflect years of a thousand phone callsmade, waiting on waiting lists only to discover that if they madeit to the top, the service no longer was what they thought they’dsigned up for, or new challenges that had developed for their childrendered them ineligible for the very service that was to help themavoid those difficulties in the first place. Those and other realitiesare punctuated throughout this issue.We observe that parents of adult children are much wiser, butthey tell us that they are much more tired. Tired physically, andweary of well-meaning discussions at countless meetings that offersuggestions of hope but few tangible options. They have heard it all.They have shifted to a different place in their thinking about theirchild on the spectrum. The language of their earlier years in livingwith autism (e.g. treatment, cure, fight, disease) has been largelyreplaced by words that describe the adult son or daughter. Wordslike “citizen,” “safe and supportive environment,” “meaningfulactivities,” “medications that actually help,” “real choices” and“people who care without being paid to do so.” Now the drivingforce is the ticking clock and the growing urgency about securingwhat is needed for their child when they are no longer here.Part of our current challenge is the gap that has grown betweenparents of children and parents of adults on the spectrum. As acommunity of parents and ASD professionals, we’ve participatedin creating that barrier and we the ones who can re-establish linesof communication to strengthen our resolve and give voice towhat really matters. A number of initiatives in Ontario are worthnoting. One area of change is the growing number of articulateself-advocates with ASD. Recent funding announced by MCSS foradults with developmental disabilities is hopeful, but how that willimpact adults with ASD remains to be seen. Several key conferencesoccurring in the next three months will solidify plans to moveforward on improving choices for adults on the autism spectrum.We already know what it takes. There’s no time to wait.Margaret Spoelstra, Executive DirectorWhen I was asked to do an articlefor Newslink on being a Boardmember, I said sure, I wouldlove to. And then I started to think, Wow!I have been on the ASO Board for eightyears, and this year I finish my final term. Itmade me stop and think of all the changesthat have gone on over the last eight years, and how far we havecome in the more than 30 years we have been established asan association.I first came to the Board in 1998. My aunt, Eleanor Stephen(Ritchie) had called and asked me if I might be interested inrunning for the position of treasurer for ASO that year. I alwayslike to say that it was the right “ask” at the right time. I saidsure, and went to my first AGM. As I stood for the election, Iwas surprised to find myself standing alone, and winning theelection for the treasurer’s position. That was my first step inmy commitment to ASO.Sometimes people ask “why would you want to be on a Boardof Directors?” Good question. I know that when I said yes I feltthat I could possibly do something worthwhile for ASO, andsince I am an accountant it seemed like a great fit. That was thefirst step. The second step was being a part of the Board. Thatmeant being a participant in the decisions and directions for ourorganization. For the years that I have been on the Board, it hasalways been a united group, representing its members and itsorganization in the best way that it can. What more could onepossibly ask? Each of the Board members that I have served withover the years has brought a light to my life and I call them allfriends. What a wonderful gift to me!It is very hard to believe that eight years have passed. I havebeen fortunate in that I have served as Treasurer, Vice Presidentand President, and currently sit as Past President. I have enjoyedevery one of these positions, and was honoured to be ASO’srepresentative in each of these roles.I know that as June draws closer, I am going to be veryemotional about leaving the Board. Putting words down onpaper to express what I have felt in being a part of the directionof ASO and its community is difficult, as it is a part of me. It willcontinue to be a part of my life as I hope to continue to work oncommittees, with the approval of the Board of Directors.I want to take this opportunity to thank all of the membersfor their support and their dedication to ASO, and to me as Irepresented Autism Society Ontario.Christine DadeASO Staff: Ethel Berry (Manager - Information, Member & Donor Services), Margaret Spoelstra (Executive Director), Karyn Dumble (Chapter Liaison/Support Staff), Barbara Worrall (Administrative and Volunteer Staff), Bonnie McPhail and Ron Harrison (Toonies for Autism Co-Chairs), Esther Zhou (SeniorBookkeeper), Gayle Height (Interim Senior Bookkeeper), Jean Woolford (Special Projects and Newslink Managing Editor), Anna Donato (Toonies for AutismManager), Patricia Gallin (ASO Program Support Coordinator)Board of Directors: Nancy Ambrogio, Leslie Broun, Jane Burke-Robertson, Lynda Clayton, Christine Dade, Claudio Del Duca (President), Linda Gibson,Jane Houlden (Chair, President’s Council), Deborah Kitchen, Ginny Pearce, Monica Richardson, Jason Smith, Lonnie ZwaigenbaumSpring 2006 The Autism Newslink
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