Adults on the Autism Spectrum - Autism Ontario

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An Interview with Pamby Andrea SwansonAndrea, who is aspiring to be a writer, worked part time with ASO before going back toschool.Imet Pam Newman-Button on a Monday last December. Margaret Spoelstra and I mether for lunch at a diner, just blocks from her Burlington apartment. Pam has beeninterviewed on video and in print many times, and has become a unique and crucialspokesperson for people growing up and living with autism. Her own story was includedin In Our Own Words. First Hand Accounts by <strong>Adults</strong> on the Autism Spectrum (now in itssecond printing - 2005).Pam recently experienced a pronounced weight loss after changing medications. Whenwe spoke to her, her insight and candour gave us an important inside look at the potentiallyprofound impact of drug side-effects.What’s the most important thing about your story for youto let people know?I worked for 30 years in my lifetime, tried marriage, led a normallife, and the most important thing is to find a medication thatworks and controls your moods and does not have a weight gainside effect. I’ll tell you something, you’d rather have a weightgain than be on nothing, be on no pills. Then you have a nopleasure life, when people don’t want to be around you.Eventually they will find a pill that will agree with [people]—weight and mood. The mood is more important than the weightgain. You might not live as long but it’s better than beingmiserable and sickYou are very proud of your weight loss.I thought, it’s bad enough having a disability that makes youappear slow, but being heavy as well, you know—like fat andstupid. Now, I can eat anything I want.After people judging you your whole life.Yes.That’s the last thing you needed!On the medication, everything I ate turned to fat. Before themedication I was like this (motioning to her body). Risperidonedidn’t have that effect on me and the weight fell off. Now I’meating anything again. The previous meds I was on I just hadto look at food and I would gain. It was horrible.That must have been frustrating.Oh yes it was, because some of my relatives were saying “Youmust be eating. You must be gorging. What have you beendoing?” Or some doctors… in Oakville, I had kidney troubleonce. I went to a kidney specialist, and I was a caretaker then.[The doctor said] “What do you do? Sit and eat?” That was awful!I worked very hard at the school board—one of the hardestworkers. I cleaned 20,000 square feet every night.The Autism Newslink Spring 2006For how long?Seventeen years.What was the reaction people had to you when you startedto lose the weight?Some people said, “Good for you, good for you! You’re doing agood job.” What if it’s the pills?I’ve had that happen quite a lot in my lifetime, when I wasin the psychiatric hospital, it happened twice, when both timesthey put me on --- [another med]. I was in the hospital for sixweeks, then I had to go back the next year in the fall, becausehigh school made me worse, so in the middle of winter theytook me off all meds to see what was I was like. I was horrible.About March they put me back on. There were constant changesof medications, on, off, different kinds until now.What were the symptoms?Agitation, thought disorder, sensitivity. I was on anti-psychoticmedications since I was 15. They cut me off one; still I had twoothers.Did those medications make a difference to you?Some helped me, some controlled me well, some controlled mealmost like a vegetable state, I don’t think [named medication]did that good of a job, but I was controlled enough.What does it feel like to be not controlled?I was irritable, fought, felt persecuted and upset. I had a lot morearguments with my mom and dad. Up and down.And when you are on one of the better drugs, what doesthat feel like?Better controlled since being on the Risperidone and also don’thave the weight gain. Many other people gain weight, but notme. I lost 11 lbs. in the first few weeks. That’s why I was so
happy; that’s why I had tears when I went on the Risperidone.Even my family doctor had tears.What are some of the things you can do now that you’velost the weight that you couldn’t do before?Dance. Dance. Dance—which I couldn’t do before. Also I couldskip. When I was a kid and on previous medications, I was tooinside myself. I was rigid. Also, now I can tend to hygiene better,like trimming my toenails.Where do you dance?Well, I went to a dinner and dance at the Oasis group and Idanced. I was so surprised! And another thing—I climbed over afence, like I did when I was a kid. Of course I sprained a musclebecause I forgot I was 57 and not a kid. I went swimming lastsummer. I had to buy a new swimming suit because the suit I hadfor many years was too big. I bought a two-piece bathing suit.Did you buy lots of new clothes?Yes. When you are overweight you don’t feel like shoppingbecause no matter what you wear you look like... Now, I havelots of clothes. I look good in everything.If you could give something to children now with autismthat you didn’t have when you were growing up, whatwould you give?A teacher’s assistant. I probably could have gone a lot furtherat school if I had help. Nowadays you have to get an educationto get a great job. It doesn’t work nowadays to get a Grade 9 orGrade 10 education; they need Grade 12—no doubt about it. Ifyou’re on disability [ODSP] you’re going to get peanuts.Mark your calendarfor Autism Dayp Pam has developed a wonderful talent as an artist. Justrecently her works were on exhibition and for sale by The Oasis ArtGroup in Burlington. This piece is entitled “Desolation.” Pam saysthat the colours and images reflect aspects of pain and hope inher life.Looking back on your life—all the things you’ve beenthrough— is there some advice that you would give peoplewith autism? What would you say to those people?That you eventually find your destination. You know, keeptrying, keep plugging. You will eventually find it. That’s the bestbet. Is that good advice?Annual Autism SpectrumDisorders Conference“Focus On <strong>Adults</strong>”June 16-17, 2006The Grand Hotel & Suites (Jarvis St.) TorontoFriday, July 21, 2006Game time: 7:05pmRogers CentreToronto Blue Jaysvs.New York YankeesEveryone is welcome to our 4th Annual AutismDay. It will feature KiSara (Kim and Sara) singing thenational anthems. Join us for a fun-filled evening. Formore information, contact Ethel at 416-246-9592Ext. 224 or ethel@autismsociety.on.ca.Presentations and discussion opportunities around adultissues. Hear from adults on the autism spectrum.Note: ASO is accepting nominations for ASO Board ofDirectors. Information can be found on our website. TheAnnual General Meeting of ASO will follow the conference onSaturday, June 16.For more information, visitwww.autismsociety.on.ca or call Ethel at 416-246-9592, Ext. 224Spring 2006 The Autism Newslink
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