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Current Newsletter HERE ARCHIVES This is the Funnest Place
/T-shirts for Sale / Mary-Minn's
Stim Page VISIT eSCRIP and Help Us OUT!! June 2004 Autism Society of Oregon
- Lane County Chapter / Mary-Minn's
Stim Page March, 2004 Migraines / 2004
KindTree Autism Forum information
September, 2003 June, 2003 Patience Works Best Forum 2003 Summary Do Words Matter? Joshua Smith - Arrowhead Man March, 2003 Benefit Auction / Dinner Autism Forum Summer Camp / Retreat Autism Support Group Understanding Asperger Syndrome Articles: Busy, busy, busy From the Inside - from Mary-Minn Mercury and Autism Dr. B Rimland New Board Member Jeanne-Marie Moore Increases in Autism diagnosis COMPUTERS!! I Ching for Peace Sorry, missing a few newsletters. Sorry... March, 2002 Autism Forum Benefit Concert with: SpiritFarm - Rob Tobias - Tim Mueller Art Show Special Event Summer Camp/Retreat News: Changes at KindTree Monthly Autism Support Group FREE Computers! Mary-Minn's Stim Page: The top 10 ways you know you have an authentic autistic child A Dental Dilemma My Favorite Stims Need Some Guidelines? A First Step in Community Comments on the WTC disaster Klezmonauts Benefit Concert Hot Deals on Cool Ice LILA is New!! Asperger's Conference Art Show News! Killing Babies?!? June, 2001 What Kind Tree Means to one autist Retreat Sponsorship Summer T-shirt Sale 4 Computers to give away
April, 2001 I'm Not Alone - Sally Meyer Autism News, Spring 2001 Universal Access in Oregon Perspectives December 2000 Art Show Announcement Treasurer's Report Thank you to Our Volunteers Autism Research Overview Inclusion & The Yellow Kite Who is Sally Meyer?? A Folk Tale... Living With My Autism by Mary-Minn Sirag Treasurer's Report July 2000 onGiving.com - help us find money the easy way More wonderful Sally Meyer Poetry Can A Brain Tune-up Help People With Autism? April, 2000 Autism News Items "In Twenty Years" December 1999 What Is Autism - An Autistic's View Is This Your Child? THANK YOU! September 1999 Just For This Day - Sally Meyer Sleep Disorders in People With Developmental Disabilities the Broken Pot June, 1999 Dan Baker: Will the Real Caregiver Please Standup? The School Bus, a poem by Sally Meyer
January, 1999 Interview with Dr. Carol Marusich "Close Encounters of the Best Kind" - a poem October, 1998 TEMPLE GRANDIN July 1998 "What Steve Says", July 1998
January, 1998
(Personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) coming to terms with autism When I was five, I vowed no longer to be autistic. My momentous decision took place in kindergarten, during the Christmas pageant. Though I was nonverbal at age 3, when the pediatrician advised my mother to institutionalize me and cut her losses, I must have fully understood what he was telling her well enough to be ashamed of the dreaded "a" word two years later. For the next forty years, my autism was a dirty secret I divulged, almost as a passing afterthought, to only my closest friends and, much later, to parents of newly diagnosed kids. People they told either said I was making it up, since I am not only verbal, but loquacious; or they felt vindicated in their suspicions that I really am a little off. Whenever I alluded to my autism, it was always in the past tense. That is not to say that I didn’t secretly devour what little I could dig up about my "former" condition, as a part of me must have known that autism doesn’t just evaporate. My third grade teacher must have known I was autistic, though. She tried to control my disruptive behavior by having her teacher’s pet reward my rare instances of "good" behavior with gifts of pom-pom birds. I resented her condescending special treatment, though I liked the birds. Horrid though my "bad" behavior must have been, I was not being rebellious; I couldn’t help it. I preferred my parents’ approach of punishing me. At least, they weren’t singling me out as defective. I did not know how most of my problems were due to the insidious pervasiveness of my autism. I erected work-arounds, which enabled me to snow my way through secondary school and college. Even though I crashed on jobs when forced to multi-task or shift attention too much, I somehow managed to keep enough people fooled to stay afloat until my mid 40s, when health problems tipped the precarious balance. It was about then that a local massage therapist, to whom I had confided my condition, told me about KindTree, and foisted me upon them. My involvement with KindTree forced me to come to terms with being chronically autistic. The following years have been a dialectic of coming to terms with this condition. In my own personal development I see parallels to the civil rights movements that have been unfolding in my lifetime. I see my long period of denial as my "Uncle Tom phase." When I started to "come out," I was afraid I’d have as little in common with other autists as with every other group. Having researched what I had seen as my "former" condition, I had an intelligent lay person’s grasp of it. However, actually meeting other autists for the first time, at KindTree’s 2000 Retreat, inspired and taught me way more. It was a spiritual experience. After a period of personally identifying with my condition, I segued into an even more obnoxious period of wanting to prove how relatively "high-functioning" I was for having conned the world into taking me for no more than an eccentric neurotic person. During high-functioning interludes, I would wonder whether my autism was "serious" enough even to count, and felt guilty for making such a big deal out of such a trivial condition. As I met more fellow autists and found out more about "my" condition, I then went into a blessedly brief "Black Power" phase of identifying almost exclusively with other autists--and nobody else. It took an unpleasant interaction with one or two of my "own kind" to realize that I am no more a product of this "group" as any other one. Meantime, as I became more involved in the autism community , my autistic shortcomings started to re-emerge with a vengeance: my freakouts; difficulty with planning, organizing and changing focus; face-blindness. I then knew I am not an inadvertently fraudulent autist. I am starting to grieve my autistic limitations--the painful dichotomy between my intelligence and talents and my functional limitations. I sometimes find myself desperately seeking some ancillary mental illness to blame my problems on. In more positive moments, I try to figure out ways to outsmart it. Mary-Minn Sirag On Migraine and Autism by Kyoko Mastrogiovanni (Kyoko's son, Ryo, is an artist and jazz connoisseur.) Twenty years ago in Japan, I did not know why my son with autism behaved as he did. All the information on how to raise children, all my common sense, all the innovative education systems, nothing worked. Even my simple and natural mother’s love seemed to be completely rejected. I was constantly blaming myself for his behavior. The worst part for me was not struggling with his behavior, but not knowing why he was behaving in this way. I still remember reading "The Ultimate Stranger" by Carl Delacato. Delacato writes, "These children with autism are not psychotic, but have severe sensory problems. They cannot deal with the stimulation coming into their brains from the outside world. One or more of their intake channels (sight, sound, taste, smell, or feel) is deficient in some way." It was a moment of true revelation. I felt that my whole world had changed. Completely! Perhaps the reason my son was constantly talking to himself was to block sounds he could not tolerate. Perhaps he refused to go to certain places because he could not stand a noise, light or smell. I had never thought that his behavior problems could be the result of sensory problems, rather than his selfishness or lack of discipline, or my failure as a mother. Knowing this made it much easier for me to accept my son's condition. I learned the power of correct information. Recently a good friend of mine, a 49 year old man, started to suffer from severe migraine. I did not know much about migraine. What amazed me most was how he described his his sen- sory problems, such as sound and light sensitivity, tactile numbness, and the lack of balance. This sounded so similar to the sensory problems in autism! My friend told me how light bothers him. He told me to imagine having had my eyes dilated for an eye exam. "Multiply that brightness 5 times," he said "That’s how I feel." He told me that when his son played in a concert in the school gym last Christmas, he had to leave because he could not tolerate the sound. He stopped shopping in particular stores, because of the chaotic light and sound. It was as if my friend were describing what my son has been experiencing but cannot verbal ize. My friend apologized for being unable to sit still. He cannot balance himself on a sofa. As long as he is standing, he can constantly shift positions to balance himself. I’d never thought about this, but this balance problem may be one reason why children with autism have trouble sitting still, and are constantly moving. In fact, many children with autism have poor balance. Even those with a supposedly superb sense of balance, who never fall and are great skiers, may actually suffer very poor balance, for which they compensate by constantly balancing themselves. Until my friend told me about his migraine, I had never paid much attention to migraine, probably because I associated it with a chronic headache rather than something serious like autism. I did not even know that Oliver Sacks, of whom I am a big fan, had written a book titled "Migraine" in the '60’s. Mary-Minn Sirag, who is a president of KindTree and has autism, says that she herself has mi graine, and has no doubt many other people with autism have it, but she has not yet discovered any studies that examine the overlap between autism and migraine. Though Oliver Sacks does not mention autism in his book "Migraine," I did find that migraine and autism share sensory issues. For example, in the section "Resonance Migraine," Sacks writes, "It is not the intensity of sound as such: nor some particular hated timbre, but, very specifically, its “frequency that is intolerable." I had learned this when my son received the auditory integration training! I am not sure how migraine and autism are related, but there is one thing I am quite certain of: If my friend had suffered sensory problems from childhood, before knowing what "normal" was like and before having the language skills to describe and explain his behavior, he would have presented "behavior problems" very similar to those in autism, and probably would have been diagnosed autistic. Fortunately my friend knows what’s gone awry with his senses, and has the language skills to describe his experience objectively. It seems to me that my friend's information holds many clues to the inner world of autism. Free Supportive Interventions Throughout the Life-Span
1 p.m. - 6 p.m. Hilyard Community Center, 2580 Hilyard Eugene, Oregon 97405 Mission: The purpose of KindTree Autism Forum 2004 is to bring together families, individuals, service providers and caregivers whose lives are impacted by Autism or Asperger's. The forum is intended to provide an opportunity for dialogue and exchange of information, and to provide a platform to discuss prevailing issues, concerns, and possible solutions. Also, when you arrive, we shall ask you to list services you are presently using (for our resource guide, published in KindTree's subsequent newsletter) and concerns you’d like to address at our concluding brainstorming session . Panel Format: brief panelist intro’s, questions, answers, and open discussion. Doors open at 1pm. 1:15-2:15pm: A panel of people with autism speak to their experiences. 2:30-3:30pm. Supportive interventions for kids on the spectrum 3:45-4:45pm. Supportive Interventions for adults on the spectrum 5-6pm. Where-to, what-next brainstorming session Agency display tables available. Refreshments will be provided. Questions? 689-2228 Forum@kindtree.org
Essays
Wanted for New Book About Autism Voices from the Spectrum: Parents, People with Autism, Grandparents, Siblings, Friends, and Professionals Share Their Wisdom Edited by Cindy N. Ariel, Ph.D. and Robert A. Naseef, Ph.D.
Cindy Ariel and Robert Naseef are proud to announce our contract with Jessica Kingsley Publishers, London (www.jkp.com). For this book, parents, people with autism, grandparents, siblings, friends, and professionals of various disciplines are invited to write about their experiences. We want to hear lessons of mind and heart culled from life and professional practice. In the essays, authors are asked to address how autism has changed your life in love and/or work, what you have learned, and what you would want others to know that would help them. We are interested in situations from the most mild to the most severe Asperger’s. Think about these questions while you are writing your essay: What experiences would you like to share? What do you want others to understand better about you, or about autism diagnosis, treatment options, relationships, etc.? What were some of the turning points, if any, in your journey? How did autism influence or even change you, your work, or your relationships with others? Here are specific guidelines for essays: 1. Please write an essay of about 1500 words, or less. Add a biography of about 100 words that would follow the essay. At the end, include your mailing address, telephone number, and Email. 2. Please submit your essay as an attachment in Microsoft Word to an Email or paste your essay into the body of your Email. Send to: cariel@alternativechoices.com 3. If you submit your essay by regular mail, please double space the text and send a disk as well. Please send the printed copy and disk to: Cindy Ariel, Ph.D., Alternative Choices, 514 South 4th Street, Philadelphia, PA 19147 4. If you are interested in this writing opportunity, please respond with a brief e-mail indicating your intent, your name, and your relationship to autism 5. Deadline: all essays are to be received by April 30, 2004. KindTree is very pleased to welcome four new members to our Board of Directors. Max Lester, 10, brings enthusiasm and great ideas to our efforts, including the new “Autism Rocks rocking chair” that is presently residing at Bridgeway House along with our small library. As a person with autism, Max is in a position to understand some of the difficulties faced by people on the spectrum, especially issues related to school. Max is the son of Nan and David Lester of Eugene. Gary Cornelius is a social worker at the Lane County Developmental Disabilities office. Gary volunteered at our Retreat last summer and must have had a really good time. Since then he has brought a calming influence to our meetings, and I’m sure we’ll think of lots of stuff for him to do. Thanks, Gary. Teresa Soler and her partner Brant Dutton parent a child with autism. They also operate a graphics design and web hosting business called “Rising Bird”. Teresa and Brant bring great energy, ideas, and dedication to the Autism Community. Keep an eye on our website to see what they’re coming up with. If you are interested in working with KindTree on some of our
exciting projects, please call Jeanne-Marie
at 684-9984. Say no to S.1248 The League of Special Education Voters of the United States, Inc. has designated March 24 - 26, 2004, the "Families United to Save Special Education Initiative." Can't make it to Washington?? National Call-in Day: Wednesday MARCH 24th, call your Senators and urge them to stand up for the rights of children with disabilities and vote NO on S. 1248 the IDEA Reauthorization. Be polite, but be firm. Tell them that S. 1248 is not in the best interests of the children, and that you expect them to vote NO. See S1248 Talking Points for specific details. They do log these calls and numbers do count. Smith, Gordon - (R - OR) (202) 224-3753 Wyden, Ron - (D - OR) (202) 224-5244 Autism is now the 2nd leading birth defect in the U.S: one in 200 children. In 1992, there were 37
people between the ages of 6 and 21 served by In 2002, there were 2,847. to become a noted researcher in brainwave therapy. In his new book, "Dolphin & The Oracle" Jean tells an incredible story about his survival from autism to become the founder and director of the Ntl Center for Integrative Medicine where the computer was used as a model for the brain to determine the frequencies the brain uses to run its software programs for regeneration. The North Star Dolphin Research Project was founded to determined the frequencies dolphins use to generate a high level of health and incorporated these super-healing frequencies onto CD disk. The subject listens to the CD while going to sleep and begins to move out of their disorder (like autism) into a reality free of the disorder. This regenerative process is known as BYONETICS. This CD is provided along with the "Dolphin & The Oracle" book and can be purchased by going to Barnes & Noble Book Stores. You can view BYONETICS by going to: www.theeforce.org March 26th-27th Keys to the Treasure Chest, More Precious Than Gold! Canadian Autism Resources and Events (CARE) is proud to present world renowned speakers Raun K. Kaufman and Lisa Lewis Ph.D. at the Hyatt Regency Hotel in Calgary, Alberta. 1-866-838-3687 www.keystotreasures.com Monday, April 12 KindTree's Autism Support Group 2nd Monday of the month, 4:30 - 6 PM St. Mary’s Episcopal
Church 689-2228 or sirag@mindspring.com
For all high functioning autists. Facilitated by C. N. Applegate
Tuesday, April 13 Asperger Advocacy Coalition’s guest will be Bob Cattoche, Special Education Administrator of the 4J School District for a discussion of school supports in place for students with high-functioning autism and Asperger Syndrome. 7 to 8:30pm at Autism Training and Support, 1355 River Road in Eugene. Nan Lester, 345-3467. Sunday, April 18 KindTree “Family Festival”. KindTree Productions, Inc. “Autism Rocks” is at it again: another groundbreaking, fun-raiser event to celebrate the Autism Community. The Autism Rocks Festival at Cozmic Pizza, Sunday, April 18, from 6 - 11 pm (April is “Autism Awareness Month”) will feature Kid’s activities (hat making, face painting, Emily Jensen’s sing along and Max Lester, DJ extraordinaire!) from 6 - 8 pm. At 8:00 the music starts on the big stage. What a great line-up: the Raventones, Tim and Nel, Gordon David Kaswell, and Emily Jensen! And it's only $5.00!! Click the image for more information.
Sunday, April 18 Autism Walkathon. Bring the whole family and your friends down to the Waterfront Park in Portland to show your support and encourage the children of the Portland metropolitan area who are on the autism spectrum. This year we will start at the Morrison Bridge, walk to the Steel Bridge and back. This is approximately one mile. Registration will start at 9:00 a.m. and the walk begins at 10:00 a.m. The event ends at noon. Prizes and entertainment will be provided! To benefit the Portland Chapter of ASO. www.oregonautism.com Tuesday, April 20 Bridgeway House “Autism
Conference 2004” featuring Donna Williams, Dr. James Adams,
our own Mary-Minn Sirag, and many others. Join us for an amazing
day of fresh perspective on treating autism. McDonald Theater,
1010 Willamette, 9am - 9pm. $100. Lunch provided. Call Patricia
Wigney 541-345-0805. Autism Training and Support: classes and groups
information at Vaccine additive linked to brain damage in children Mercury-based preservative tied to autism, ADHD, U.S. resaearchers say. Sharon Kirkey, CanWest News Service Thursday, February 05, 2004 OTTAWA -- After assuring parents that additives in vaccines don't cause brain damage, scientists have found what they believe could be a "smoking gun" linking these additives to autism and attention-deficit hyperactivity disorder in children. In a study that was rushed to print on-line today, two months ahead of its scheduled publication in the journal Molecular Psychiatry, U.S. researchers have discovered an apparent link between thimerosal, a controversial mercury-based preservative once commonly used in childhood vaccines, to an increased risk of neurological disorders such as autism and ADHD. While most vaccines distributed in Canada have been thimerosal-free since the early 1960s, the preservative was used in the annual flu shot that doctors recommended this year for even healthy children. In tests on human brain cells, researchers found two natural chemicals -- one compound that stimulates cell growth and also dopamine, which transmits nerve signals -- are both key to a process in the brain called methylation. Methylation helps DNA work properly and is crucial to the normal development of the brain. The team found thimerosal, ethanol and the metals lead and mercury all interfere with methylation. What's more, thimerosal did so at doses 100 times lower than a child would receive after a single shot with a thimerosal-containing vaccine. "It was by far the most potent," said investigator Dr. Richard Deth, a professor of pharmacology at Northeastern University in Boston. He said the study, which also involved researchers from Johns Hopkins University, the University of Nebraska and Tufts University in Boston, could account for the rising rates of autism since the early 1980s, when more thimerosal-containing shots were added to a child's vaccine schedule A recent review of vaccine-related "adverse events" in the U.S. found a "significant correlation" between shots containing thimerosal and autism, the researchers report. But one of Canada's leading experts in vaccination says large studies have repeatedly failed to find any association between brain damage and vaccines that do, or don't, contain thimerosal. "What [the researchers] are doing in the test tube may or may not have any relationship to what happens in the body," added Dr. Ronald Gold, professor emeritus of pediatrics at the University of Toronto and author of Your Child's Best Shot: A Parent's Guide to Vaccination. He says there's no evidence that the low doses of thimerosal researchers tested would even cross a child's blood-brain barrier. Dr. Perry Kendall, B.C.'s chief health officer, was also skeptical of the study, although he said he had not yet had a chance to read it. He said there have been several studies that make weak links between autism and vaccines, but none has been definitive. "I think that the link between thimerosal and autism has been studied quite extensively to date," he said. "And I don't think there's any convincing evidence on the population basis that vaccination is underlying the increase in autism." Kendall said he was not aware, however, of any other studies that make a link between vaccines and ADHD. In B.C., thimerosal is still used in the hepatitis B vaccine that is given to Grade six students, as well as the annual flu shot, he said. Before the early '90s, most causes of autism were believed to have a strong genetic component, and symptoms surfaced soon after the child was born. But, a newer, and more common form of the disease is known as regressive autism, in which children appear to be developing normally, but then suddenly regress. "They lose functions they had before, such as early speech," Deth says. "Parental anecdotes and clinical reports have suggested it happened during periods of high vaccine exposure." "Up to now, people have said the cause, or causes of autism, are unknown. Our work isn't final in any sense at all, but it seems to point to this biochemistry as a potential, or even primary cause, of autism." Thimerosal had been used to prevent the growth of bacteria or fungi in multidose units of vaccines for diseases such as hepatitis and diphtheria, pertussis (whooping cough) and tetanus, or DPT. As of March 2001, all vaccines for routine immunization of children in Canada have been available without thimerosal. But the annual flu shot, which is given to children over six months of age -- contains the preservative. And thimerosal is still found in larger, multi-dose vaccines shipped to Third World countries. Dr. Laszlo Palkonyay, medical-scientific adviser for Quebec-based flu vaccine maker Shire Biologics, said a study published in the journal Pediatrics last September, which was based on a registry of all psychiatric admissions in Denmark between 1971 and 2000, found no trend toward an increase in autism rates during the period thimerosal was used in vaccines in that country. In fact, he said the incidence of autism increased after the preservative was removed from vaccines in 1990. Thanks for Listening. SEPTEMBER, 2003 KindTree Volunteers - Work From the Heart This year has been extraordinary for KindTree. Much of our success is the direct result of the wonderful efforts of our "awesome" volunteers. To honor them, we invite you all to our 2nd Annual Volunteer Appreciation Party, September 27. The great time we had at our Spring Auction/Dinner, the smooth operation of our Autism Forum, the great sales achieved at Art & the Vineyard (see box on page 4), and the joy that filled the air at this Summer’s Autism Camp/Retreat was all because of them. All the folks chopping and mixing in the Camp Baker kitchen, the boys in the band Saturday night, the lifeguards at the lake, our Board members planning and shopping and making signs, the folks staffing the craft tables and doing all the setting up and taking down and cleaning up and putting away - all those people made our Retreat seem effortless and safe and magical, just the way it should be. As one guest commented on our feedback form, "The thing that touched me the most is that you did it for love, not for money or gain for yourself." All of us, you and I, are lucky to be part of this very special Autism Community. You may have noticed that autism is getting a fair amount of press lately. Newsweek did a cover story in their July 28 issue. A Dr. Joan Fallon was issued a patent on a Biomarker Linking Autism, ADD and ADHD, reported by MedicalNewsService.com. A new book, "The Curious Incident of the Dog in the Night-Time" by Mark Haddon, an emerging best seller, features a main character with autism. And KindTree has just sold 800 Autism Rocks note cards to California CADDRE - California Center for Autism and Developmental Disabilities Research and Epidemiology. They will bring together families, scientists, doctors, researchers and other experts to establish a comprehensive surveillance system to track children with autism spectrum disorders throughout the state, and also conduct several large studies with a culturally diverse population of children in California in order to investigate possible causes and risk factors associated with autism. They plan on including a complementary note card in outreach packets being sent to prospective research subjects and their families. Much to our delight, they chose two designs by 5 year old Eugenian Melissa Dahl, one of Autism Rocks’ featured artists in our Holiday Note Cards offering. (see insert). Congratulations, Melissa. We are all very proud of you. Thanks to all of you for being part of this. Tim Mueller, Sec-treas.
(Written by autists about living with autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) A weird autistic sensorium by Mary-Minn Sirag Every so often, I find myself whiffing the underside of my elbow and the back of my hand, checking in with my nose to make sure I don’t smell too off. Sometimes, I exhale heavily onto my hand, to make sure my breath isn’t too rank. I try to have at least some sweet smelling lotion on hand. At age 24, I got fired from a Baskin Robbins for subtly (I thought) rubbing my fingers against my under arm and sniffing them on a steamy summer day to make sure my deodorant was still working. I don’t remember my conclusion, just that I was fired shortly thereafter, for that plus a medley of other autistic faux-pas. I am presently marooned "between" protective scents. Like the glamour girl who cannot leave home without a full mask of makeup, I¹m feeling mighty naked. Today, I spent a good hour squeezing and pouring testers at a local health food in a vain and desperate quest for a hand lotion I had recently discovered but whose name I can’t remember. My holy grail is the security blanket of the perfect scent. This almost Platonic olfactory ideal has always been a moving target for me, especially after a recent illness, when my sense of smell skewed nastily into the greener reaches of the color wheel, which, unlike its painterly counterpart, turns out to have its complement in the innocent periwinkle reaches. My predilections have shifted from Chinese red (amber paste, Guerlain’s Mitsuko and Jicky, an elusive Italian perfume called Cobra) back to the innocent periwinkles of my early childhood (Elizabeth Arden¹s Blue Grass, Nina Ricci¹s l¹Air du Temps, Fleurs du Rocaille, a dime-store Muguet des Bois). My synesthesia envelopes every sense of mine. I even thank it for my orthographic and alphabetic knack. I wonder how many other autists are synesthetes. I can identify scores of classic perfumes by smell, even recall them in my imagination, decades after having smelled them. The coloristic and instrumental accompaniment supplied by my synesthetic imagination no doubt helps. I just wish I could extend these synesthesiae to procedures and other sequential information, faces, locations in space and other visual things, for which I am downright aphasic. Though we autists tend to share a concrete processing style, the foci of our apocryphally Rainman-ian eidetic memories differs from autist to autist as radically as from one "neuro-typical" person to the next. Though I cannot recognize a face until I have met or--even better--seen a picture of someone six or so times, there are entire symphonies and piano concertos that I can whistle from start to finish; likewise with scents and flavors, which I not only can recognize but conjure up in my head decades later. I process a perfume much as I do a symphony. Much as I love a good rose, not all comes up roses for this persnickety Nose of mine. For one, the smell of franchise fast-food not only nauseates me, but hangs around in my olfactory bulb for a good 24 hours, often perseverating into a crescendo of caustic migraines. Probably the most phobic smell--besides a plague-infested battlefield, perhaps--is the acrid stench of "buttered" popcorn at chain cinemas. I know a young girl with autism who is phobic of ketchup breath! The Japanese describe Americans as "butakusai", which means "stinking of butter". When I first learned this word, while working at a Japanese trading company in San Francisco, I felt validated that I’m not the only olfactory paranoiac out there! I have found ketchup breath, among other things quintessentially American, to be very "butakusai". All my senses are at least somewhat tweaky. It took me until the age of 12 or 13 years, for instance, to know when I was sick. I usually had to collapse in a faint or throw up in the middle of class--or freak out or melt down for no apparent reason. I don¹t think that this was entirely because I was sick so much of the time, though that might have been a contributing factor. I think there was no little sensory processing confusion going on in whatever part of the brain is supposed to alert the rest of the body of such an event. I remember several instances of somebody’s finally having figured out that I was sick, and what an "aha" experience this imparted to my fever enfeebled intellect, in retrospect. My passion for playing "the sleeping game" and my uncharacteristic indifference to chocolate, my all-time drug of choice, suddenly made sense to me. My mother tells me that I rarely cried as an infant, even when I was hungry. I spent my early infancy staring at the ceiling, whimpering softly when, as one of my mother’s friends ascertained, my stomach was hurting. (Lest you mothers wax too envious of mine’s good fortune at having begotten such a little angel, rest assured that my 18th month of such enviable babyhood ushered in a new apocalypse of either shrieking and throwing things, and rocking back and forth in a catatonic stupor.) My early indifference to food evolved into exquisite pickiness. I gagged on cereal and rice. I abhorred all spices besides salt and pepper. I was forced to overcome my pickiness about food by embracing an ever widening variety of foods, simply because I grew up in the Middle East, where mashed potatoes and homemade dumplings were hard to come by, and grains, which I have never liked, were even more central than they are in the States. (I still haven’t embraced grains wholeheartedly, partly, it turns out, because I can digest so few of them.) I was 12 years old before I’d touch rice--and then only the Basmati variety--or garlic. I remember being so phobic of garlic that my mother threatened to rub it on my fingers to deter me from devouring my nails and some of my fingertips, for added zest. I remember being particularly phobic of cilantro and coriander, and of cinnamon in any non-sweets’ context. Since proudly overcoming these phobias, I made all these ingredients into cornerstones of subsequent cooking obsessions. The same love-hate thing applies to other kinds of fear I have managed to conquer, such as swimming. I wonder whether the same holds true for neuro-typical folks. Onto music: A teenage friend of mine, who has Aspergers, shrieks, winces and plugs his ears desperately whenever he hears any female voice singing. I doubt very much this is a sexist prejudice, as this young man harbors no other aversion toward girls and women. Furthermore, I remember the sound of any female vocalist having the same effect on me through my teens, until I trained myself consciously to appreciate a wider variety of music. My prejudice was especially galling, since I had been inflicting my female singing voice since age one. My early music taste was overly refined. I would positively shrivel whenever I heard any note sung or played off-key, or the wrong note or rhythm sung or played. It affected me much as sirens, jackhammers and motorcycles do, bypassing my ear and going right into my pain center. It mattered naught that I probably was missing my vocal and harmonica aim more than occasionally! Just like my young friend, I would plug my ears forcefully and wince whenever anybody else messed up. In elementary school, I liked only the Beatles and Gilbert and Sullivan operettas, the latter probably only because I got to sing Yum Yum, Little Buttercup and Josephine. My only salvation from my claustrophobic narrowness was that I would periodically "burn out" "my" composers by over bingeing, which left me utterly devoid of salve for my music-parched spirit. These burn-outs forced me to venture forth into new territory. My middle-aged taste is much more varied, which provides insurance against finding myself marooned between musical binges. I still have singers
and composers I cannot stand, though, as does any autist worth
his or her salt. Barbra Streisand, Benjamin Britten and Gregorian
chants come to mind, though I am confident that I am suppressing
my awareness of whole other genres that propel my finger to
the "off" button of my many radios. The closest I have come
to liking Barbra is my deep appreciation for Patti Smith,
which though no ceegar is a start. When I can tolerate a whole
side of Funny Girl, I’ll know the time has come f | ||||||
Rocks,
born a few years later and still going strong. Roy was a strong
supporter of KindTree from its inception and always valued
its dedication to human rights.