Autism News Articles
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Novel therapy for autism; Snoezelen Room has city families all smiles
Wednesday, August 01, 2007 - 08:00
Local News - Giggling and laughing, Paskale Pilon waves at himself in the mirror.
His parents, Nyree and Serge, watch as he then dives under a blanket full of plastic balls and declares that "it's like a cave" in there. The 11-year-old has only been coming to this therapy room, called the Snoezelen Room, for about a month, but he already knows he loves it.
"Do you like coming to the Snoezelen Room?" his dad asks.
"Uh-huh," Paskale replies. "Because I love it. It's so cool."
Paskale was diagnosed as autistic when he was three years old.
The Snoezelen (pronounced snooz-e-len) Room is a type of multisensory room designed to stimulate a child (or adult) who has autism or developmental disabilities.
Since Paskale has been going to the Snoezelen Room over the past month, his parents have noticed the normally energetic, smiley talkative boy co-operates more and looks forward to going to the therapy room.
It also provides mom and dad with a much needed break as Paskale is quite a handful: from the moment he gets up at 6 a.m., his dad said, to the time he falls asleep he chatters non-stop.
"He requires 24-7 care," Serge said. "It gives us a chance to do other things, like stuff around the house, errands, while he is in here."
Nyree added that they both knew about the concept before the room was built in Cornwall and couldn't wait to see how Paskale would react when he made his first visit.
Created by two Dutch psychiatrists, the belief is that the different sensations in the room - sound, smell, touch, sight - provide a soothing environment, which can help to reduce agitation or make people relax.
It's a small room in a building located at 126 Gloucester St., maybe big enough to fit a child's bed, desk and drawers. Being in the room can be very therapeutic, said Debbie Keillar, the local chapter president of Autism Ontario, but it's not necessarily meant to be educational.
Although, she added, depending on the individual, there can be educational benefits, like learning about different colours, to count and about cause and effect.
"A lot of people with autism need (the stimulation)," she explained. "The way they process their environment is different. Someone who you might think is unresponsive - you'd be amazed what responses this will bring out of them."
A common myth about autistic individuals is that they have no emotion: a myth Keillar said she's seen debunked by the Snoezelen Room's sensory therapy approach.
"If an individual is non-verbal, they may be able more clearly communicate in here," she said, adding that parents have seen their seemingly unemotional children smile and laugh while exploring the Snoezelen Room's environment.
But not every child reacts positively to the room, added Bernadette van Gurp, a supervisor with S, D and G Developmental Services.
"We had one girl who wanted nothing to do with it," van Gurp said. "But most often, the reaction is positive."
Different types of lights, from the tiny bead lights in the "milky-way" carpet to lava lamp style lights that can be projected on the wall.
There are blankets filled with plastic balls, which Keillar said a child might lay under - the heavy blanket could provide an enjoyable "deep pressure" feeling - funhouse-type mirrors and 30 different aromatherapy scents.
Children and adults alike can watch bubbles rise and fall in a water tube, crinkle a blanket filled with foil or just fall asleep to soft nature music.
Heidi Penning, the former local chapter president of Autism Ontario, is credited with writing the grant to secure the $25,000 in funding from the Ronald McDonald Children's Charities of Canada.
Another $6,000 was donated by the Upper Canada chapter of Autism Ontario. The money was required to purchase all the equipment and train staff, Keillar said. The room was officially opened last November.
FROM a Listmate
The New Haven Learning centre is currently expanding it’s enrolment across all age groups for the upcoming 2007-2008 school year. Interested families should contact Tracey Lacka, Executive Assistant at 416-259-4445 x 0 or Newhaven@bellnet.ca for more information.
New Haven Learning Centre
301 Lanor Avenue, Etobicoke, ON M8W 2R1
From The Wall Street Journal
For Parents of Children with Special Needs, Public School Offers No Relief
Word Count: 717
As the father of a mildly autistic first-grade boy I would like to say thanks for your series of articles that have brought the challenges of special education to light. When I tell family or friends the things we have had to endure they think I am exaggerating. Your articles, and this one in particular ("Staying the Course: Schools Beat Back Demands for Special-Ed Services," Page One, July 24), make me want to plead and beg all the more for real school choice and vouchers.
The public-school system in this country is broken. Union thugs and overpaid fat-cat administrators don't ...
• THE FULL WSJ.com ARTICLE IS ONLY AVAILABLE TO SUBSCRIBERS.
• IF YOU ARE ALREADY A SUBSCRIBER, PLEASE LOG IN AT THE TOP RIGHT OF THE PAGE.
SYMTREND= A social Skills software program available on the market.
89 Bay State Rd.
Belmont, MA 02478
Thank you for your inquiry. We don't have an actual device. What we
have is software to run on a regular Palm computer that you can buy in an
electronics store or online.
Our software, which works on a handheld computer and on the web at our
site (www.symtrend.com) lets the user record information about
behaviors, feelings, stresses, and physical symptoms, as well as gives the user
guidance about things to do in challenging situations.
Applications for Asperger Syndrome, a form of autism, and applications for lower functioning autistic persons who cannot respond adequately or read adequately for themselves. Then the parent or teacher records about him/her.
If you want to learn more about applications for Asperger persons, go
to http://www.youtube.com and search for SymTrend. We have a video there
you can watch.
If you'd like to discuss what your child needs with one of our
clinicians, call us (toll-free) at 866-796-8736.
I look forward to working with you to help your child.
Welcome toSymTrend®“Testing out the tips and writing down how it went has made the reminders stick more than usual…I used to feel anxious, about what to talk about, how to say it….”-Arthur, East Bridgewater, MAUse a handheld computer and SymTrend software to:-Monitor someone’s feelings or have him self-monitor-Understand what triggers problems-Improve interactions & behavior
FROM A LISTMATE
From: "Julie Coulter"
>Subject: NEW Sibling Autism and Asperger Sydrome DVDs
>Date: Tue, 26 Jun 2007 14:52:37 -0400
>We're letting our customers know about a new DVD Coulter Video is releasing
>today titled, "Understanding Brothers and Sisters on the Autism Spectrum."
>This video is designed for siblings who have brothers and sisters diagnosed
>with autism. The video deals with a range of autistic conditions, with the
>exception of Asperger Syndrome. We'll be releasing a similar video for
>siblings of brothers and sisters diagnosed with Asperger Syndrome within
>next few months.
>Each DVD (the autism version and the Asperger Syndrome version) contains
>four programs; three for siblings of different ages and developmental
>levels, and one for their parents. The sibling programs are for children
>ages 4-7, ages 7-12 and ages 12 to adult. While the two DVDs have a similar
>format, each is unique. For example, we interviewed families dealing with
>an autism diagnosis for the autism DVD and families dealing with an
>Syndrome diagnosis for the Asperger Syndrome DVD.
>These videos show siblings that other kids are facing the same challenges
>they face, and explores a range of ways the kids interviewed have learned
>get along with and enjoy their brothers and sisters. The videos also can
>help parents understand the special needs of their neurotypical children.
>The segments for siblings ages 4-7 feature puppets and the segments for
>older siblings feature interviews with brother and sisters. We interviewed
>mothers and fathers for the parent segments.
>Overall, we interviewed members of 24 families with children on the autism
>spectrum to create these two videos. After viewing these programs,
>should have a better understanding that their brothers and sisters aren't
>trying to be difficult, and should be more willing to treat them with
>tolerance, caring and respect.
>Again, "Understanding Brothers and Sisters on the Autism Spectrum" is
>available now. "Understanding Brothers and Sisters with Asperger Syndrome"
>is scheduled for release in August, 2007. Here's the Internet address to
>view more information about the video on our website:
>We hope these videos can be a helpful resource for families.
>Julie and Dan Coulter
>1428 Pinecroft Drive
>Winston-Salem, NC 27104
>tele. & fax: 336 794 0298
Not autism related but your child might have these toys on recall
From a Listmate:
Ask Lindsay Moir:
More on provincial campaign questions
Friday, August 03, 2007
In last week's column I asked parents to send me ideas for questions to be directed to candidates and parties in the upcoming provincial election — thank you for the great response! Here are three questions constructed out of several concurrent responses.
Background: (Based on five emails)
Parents of special education students are generally pleased with new initiatives such as funding for ABA in education, Special Education Transformation, Special Education Funding reform, new resource documents, changes in the Safe Schools Act etc. These initiatives seem to have all-party support, so this is a non-partisan issue. HOWEVER it is the impression of many parents that the Ministry of Education continues to roll out excellent changes, but there is little or no monitoring of implementation. There does not appear to be consequences for boards or educators who ignore Ministry initiatives, or contravene the Act.
Several excellent Special Education initiatives which have all-party support have been announced by the current government. In order to implement these reforms, it is my belief that the Ministry must invest significantly in training and close monitoring of school board implementation. Significant sanctions need to be put in place for educators and school boards who ignore provincially-mandated policy direction. Where do you stand on the mandatory training of school boards, mandatory external monitoring and sanctions of boards who fail to implement provincial policy?
Background: (based on three emails)
We believe strongly in integration (inclusion) and public education. We are seeing an increase in the number of parents of special needs children who are contacting associations and support groups for information on private schools and homeschooling. Major issues for these parents are the resistance to change by the school board bureacracy, failure to deal with staffing or training issues, timeliness of decision making, a perception that staff issues and desires supercede student needs. and negative attitudes towards families who speak out.
Given a perceived exodus of exceptional students and their families from the publically-funded school system, what are you and your party prepared to do to investigate this perception and if it is correct, respond to these families?
Background:(based on 3 emails)
There has been considerable discussion in this campaign about funding "faith-based" education. Many parents of special needs have "faith" in a particular technique or instructional approach. These strategies are widely-used in other jurisdictions, but some schools or boards in Ontario often refuse to implement them. (Some examples from the emails are an IBI-based school program, Direct-Teaching, DTT, phonics-based Reading, Sign Language).
Where parents and community professionals can demonstrate that an unusual teaching approach can be used to the benefit of an exceptional student, and that research can document that it is pedagogically-sound, and training is available, would you support legislation that would make the the timely provision of such an approach, mandatory?
Lindsay Moir retired from the Ministry of Education in 1997 and has been assisting agencies, associations and parents in obtaining appropriate special education services for exceptional pupils.
Family Net welcomes your questions about special education in Ontario.
E-mail Lindsay at email@example.com He will answer as many questions as possible.
• Events & Opportunities
View upcoming events and available job openings.
• Family Net
Helping families through shared experiences. Featuring "Ask Lindsay Moir"
Keep up-to-date with our infomative news articles.
From a Listmate
Reception to honour Shelley Martel:
There will be a reception to honour Shelley Martel and celebrate Shelley's twenty years of outstanding parlimentary and community service.
Wednesday, August 22nd
5:30 to 7:30 pm
Stop 33, Sutton Place Hotel
955 Bay Street, Toronto
Must RSVP for tickets to Shirley Darling 416-535-2031 or firstname.lastname@example.org
From a Listmate:
O N T A R I O A U T I S M C O A L I T I O N (“O.A.C.”)
August 3, 2007
The Ontario Autism Coalition, a grassroots advocacy group, is pleased to welcome several new activists to leadership positions within the organization.
• Malcolm Stanley ( Toronto ) is the father of a three-year old girl with Autism and an active “blogger” on autism related topics. You can view his blog at www.soaringhorse.com.
• Sharon Gabison ( Concord ) is a mother of two (including a 10-year old son with Autism), a physiotherapist, entrepreneur and college professor.
• Sam Yassine ( Ottawa ) is a father of a seven-year old son with Autism, an M.D. and a strong activist for autism.
• Mary Beth Rocheleau ( Windsor ) is the mother of a 6-year old son with Autism, and a Registered Nurse.
These enthusiastic new members have joined forces with co-founders Bruce & Laura McIntosh and Dan & Susan Fentie to move this organization into their next phase of lobbying for improved services for children with Autism in Ontario .
Founded in 2005, The Ontario Autism Coalition has grown into a province-wide organization with over 600 members. Over the past two years, the OAC has organized over 20 rallies and drawn public attention to the need for publicly funded programs that effectively meet the needs of individuals in the Autism community. They have also met with dozens of government Policy Advisors, senior provincial Cabinet Ministers and Members of Provincial Parliament to make their case.
The OAC is committed to placing autism issues front and centre in the upcoming 2007 provincial election campaign. The OAC is dedicated to ensuring that politicians from all political parties are aware of concerns facing the Autism community through organized events and press releases.
Media may contact any members of our leadership team for interviews or comments:
GTA Laura & Bruce McIntosh 905-761-5226 email@example.com
Richmond Hill Sharon Gabison 647 892-4418 firstname.lastname@example.org
Sarnia Dan & Susan Fentie 519-869-4198 email@example.com
GTA Malcolm Stanley 416 275-3562 firstname.lastname@example.org
Windsor Mary Beth Rocheleau 519 734-6387 email@example.com
Ottawa Sam Yassine 613-841-3886 Sam_yassine@rogers.com
from a listmate:
> Hi Everyone,
> Please pass this information on to anyone you think
> might be interested in learning how to teach children
> with autism using a blend of ABA and Montessori.
> I am teaching two new courses at Sheridan (Oakville
> Campus) in the Fall.
> 1. Autism-Montessori Approaches in the Home. This
> course is for parents and caregivers of children with
> autism, teaching strategies of our program in a home
> setting. It begins Sept 12 (Wednesday) and runs one
> evening a week for twelve weeks. The course code is
> 2. Autism-A Montessori Approach. This course is for
> already certified Montessori teachers who want to
> learn how to do our program either in a regular
> Montessori classroom (integration) or develop their
> own clinic room. This course begins Sept 10 (Monday)
> and runs one evening a week for 11 weeks. The course
> code is SOCS78001.
> You can go online to register for the courses or
> contact Sheridan College directly.
> Their website is the following:
> If anyone has any questions about this email please
> feel free to contact me.
> Kind regards,
> K. Michelle Lane B. A., A.M.S., (M.A.A.A.)
> The Lane Montessori School for Autism
> Not for Profit Organization
> (formerly The Toronto Montessori School for Autism)
> t. 416.435.2460
> f. 416.483.8613
> e. firstname.lastname@example.org
> w. http://www.montessoriautism.com
From a Listmate:
From the New York Times
August 5, 2007
A Faith’s Embrace Leaves No One on the Outside
By JOSEPH BERGER
JEWISH mothers fret about that spotlight moment when their child is called to the Torah for the first time, but few have the sorts of worries that Jackie Saril had before her daughter, Jami, was bat mitzvahed.
Jami is autistic, which means she lacks a whole quiver of intellectual and social skills and might create some awkward moments by whining or jumping up and down on the bimah, the stage where the Torah is read.
“I was worried about her having a meltdown, refusing to get on stage, to stay on the stage, to get off the stage,” Ms. Saril said. “Jami wore leggings because she doesn’t understand how to cross your legs when you sit with a dress. She wore flat shoes so she could climb the bimah without tripping.”
Ms. Saril wanted her daughter to follow the blessings with a hand-shaped pointer, like other children do, but the pointer had a chain and Ms. Saril anticipated that Jami would fiddle with it instead of reciting her blessings. So she and Erik Contzius, the cantor at Temple Israel of New Rochelle , taped the chain to the pointer. She made sure to have Jami listen to a CD during parts of the service when she was not on stage. Music would calm her.
While the synagogue normally schedules bar and bat mitzvahs outside the sluggish summer, Ms. Saril intentionally scheduled Jami’s on July 21, two days after her 13th birthday, because she knew the audience would not be teeming with unfamiliar faces that might rattle her.
“It was all about Jami having this wonderful milestone in life with the people who helped get her there,” Ms. Saril said.
Such milestones probably would not have been observed in any religion just a few generations ago. Children with autism and Down syndrome were often institutionalized, hidden from the daily ebb and flow. “It was a shanda and nobody spoke about it,” said Ms. Saril, using the Yiddish word for shame. Now such children are raised at home and communities are bringing them into the fold. At this reporter’s synagogue, a teenager with Down syndrome is one of the Hebrew Torah readers.
“These families wanted to be part of Jewish life, but they were either uncomfortable or Jewish life had shut them out,” said Deena Spindler, director of community programs for Matan, the special-needs agency housed at the Jewish Community Center of Mid-Westchester. “Many families say, ‘We come to synagogue and everyone looks at our child,’ but Judaism teaches every person is important, and that demands embracing everybody.”
Ms. Saril, a product of an Orthodox yeshiva in Brooklyn, though Temple Israel is Reform, wanted her daughter to connect with Jewish traditions, even if she didn’t quite understand what God meant — a hard concept for anybody. Matan taught Jami biblical stories and Jewish values and had her make Passover plates like other Hebrew school children.
“I never wanted her to be the kid looking out the window while everyone else is playing,” Ms. Saril said.
Mr. Contzius, who has a son with a form of autism known as Asperger’s syndrome, first proposed having a bat mitzvah for Jami. He taught her the blessings, and he and Ms. Saril worked out a minute-by-minute schedule (autistic children thrive on schedules). It read in part: “1. Cantor C calls me to the Beema. 2. I go up to the Beema. 3. I sit quietly and keep my feet still while the curtain opens. 4. I carry the Torah carefully to the podium.”
On a radiant day, Temple Israel’s stained-glass sanctuary was lined with the people who had helped Jami reach this moment: her mother and stepfather; her 4-year-old sister, Dani; her stepbrother, Matt, 24; two sets of grandparents; four nannies, and therapists and educators from New Rochelle and from her current school, Devereux Millwood Learning Center in Millwood. Somewhat sadly, there were no friends Jami’s age.
“Jami doesn’t have friends,” Ms. Saril said.
Jami spent the first half-hour listening to music from “Hannah Montana.” When the ark was opened, she scampered up the stage without tripping and, with the cantor standing protectively alongside, carried the Torah to the podium. Announced by her Hebrew name as Chana Bracha bat Yocheved Devora, she read the same blessing every Jew reads, if perhaps not as clearly as some. Her mother chanted the Torah passage. Jami pronounced the second blessing and then recited her speech, reading headline-size words with a scanning device that allows her to focus one line at a time.
The speech was just 10 sentences long, but every one was resonant.
“Today is my bat mitzvah,” it began. “Becoming a bat mitzvah means that I have to be a good person every day.” It closed with a pledge that stirred more than a few tears: “I promise to be the best Jami I can be.”
After she finished, she skipped once around the stage and let out a soft whoop of pleasure. No one minded.
From a Listmate
August 5, 2007
What Autistic Girls Are Made Of
By EMILY BAZELON
Caitlyn & Marguerite sat knee to knee in a sunny room at the Hawks Camp in Park City , Utah . On one wall was a white board with these questions: What’s your favorite vacation and why? What’s your favorite thing about yourself? If you could have any superpower, what would it be?
Caitlyn, who is 13, and Marguerite, who is 16 (I’ve used only their first names to protect their privacy), held yellow sheets of paper on which they had written their answers. It was the third day of the weeklong camp, late for icebreakers. But the Hawks are kids with autistic disorders accompanied by a normal or high I.Q. And so the main goal of the camp, run on a 26-acre ranch by a Utah nonprofit organization called the National Ability Center, is to nudge them toward the sort of back and forth — “What’s your favorite video game?” — that comes easily to most kids.
Along with Caitlyn and Marguerite, there were nine boys in the camp between the ages of 10 and 18. They also sat across from one another in pairs, with the exception of one 18-year-old who was arguing with a counselor. “All I require is a purple marker,” the boy said over and over again, refusing to write with the black marker he had been given. A few feet away, an 11-year-old was yipping and grunting while his partner read his answers in a monotone, eyes trained on his yellow paper. Another counselor hurried over to them.
Marguerite was also reading her answers without eye contact or inflection. “My favorite vacations were to India and Thailand my favorite thing about myself is that I’m nice to people if I could choose any superpower I’d be invisible,” she said in an unbroken stream. She looked up from her paper and past Caitlyn, smoothing her turquoise halter top over the waist of a pair of baggy cotton pants. Caitlyn was also staring into the middle distance. She has gold-streaked hair, which was bunched on top, and wore a black T-shirt with a sunburst on the front and canvas sneakers with skulls on the tops. The girls didn’t look uncomfortable, just unplugged.
A counselor noticed their marooned silence and prodded Caitlyn to take her turn. At first, she ran quickly through her answers, too. But Caitlyn loves fantasy — she is an avid writer of “fan fiction,” spinning new story lines for familiar characters from “Pokémon” and “Harry Potter” — and the superpower question grabbed her. She looked at Marguerite. “If I could have any power, I’d want to be able to transform into an animal like a tiger,” she said, smiling and putting her hands in front of her face, fingers tensed as if they were claws. Marguerite smiled and tentatively mirrored the claw gesture. Caitlyn smiled back. “I like tigers,” she said, her eyes bright behind her glasses. “Do you?”
It was a small, casual encounter and also an exceedingly rare one — a taste of teenage patter shared by two autistic girls.
Autism is often thought of as a boys’ affliction. Boys are three or four times as likely as girls to have classic autism (autism with mental retardation, which is now often referred to as cognitive impairment). The sex ratio is even more imbalanced for diagnoses that include normal intelligence along with the features of autism — social and communication impairments and restricted interests; this is called Asperger’s syndrome (when there is no speech delay) or high-functioning autism or, more generally, being “on the autistic spectrum.” Among kids in this category, referral rates are in the range of 10 boys for every girl.
According to the Centers for Disease Control, there are about 560,000 people under the age of 21 with autism in the United States . (Adults aren’t included because there is no good data on their numbers.) If 1 in 4 are female, the girls number about 140,000. The C.D.C. estimates that about 42 percent of them are of normal intelligence, putting their total at roughly 58,000 (with the caveat that these numbers are, at best, estimates).
Because there are so many fewer females with autism, they are “research orphans,” as Ami Klin, a psychology and psychiatry professor who directs Yale’s autism program, puts it. Scientists have tended to cull girls from studies because it is difficult to find sufficiently large numbers of them. Some of the drugs, for example, commonly used to treat symptoms of autism like anxiety and hyperactivity have rarely been tested on autistic girls.
The scant data make it impossible to draw firm conclusions about why their numbers are small and how autistic girls and boys with normal intelligence may differ. But a few researchers are trying to establish whether and how the disorder may vary by sex. This research and the observations of some clinicians who work with autistic girls suggest that because of biology and experience, and the interaction between the two, autism may express itself differently in girls. And that may have implications for their well-being.
The typical image of the autistic child is a boy who is lost in his own world and indifferent to other people. It is hard to generalize about autistic kids, boys or girls, but some clinicians who work with high-functioning autistic children say they often see girls who care a great deal about what their peers think. These girls want to connect with people outside their families, says Janet Lainhart, a professor of psychiatry and pediatrics at the University of Utah who treats Caitlyn and Marguerite. But often they can’t. Lainhart says that this thwarted desire may trigger severe anxiety and depression.
Other specialists are not sure that girls struggle more in these ways. “This is a profile of both boys and girls,” Klin says of the wish to connect that some people with autism have. But he agrees with Lainhart that it is easier for Asperger’s boys to find other boys — either on or off the autistic spectrum — who want to spend hours on their Game Boys or in a realm of Internet fantasy. Klin and Lainhart also say they think that the world is a more forgiving place for boys with the quirks of Asperger’s because, like it or not, awkwardness is a more acceptable male trait.
This gender dynamic doesn’t necessarily affect girls with Asperger’s when they are very young; if anything, they often fare better than boys at an early age because they tend to be less disruptive. In 1993, Catherine Lord, a veteran autism researcher, published a study of 21 boys and 21 girls. She found that when the children were between the ages of 3 and 5, parents more frequently described the girls as imitating typical kids and seeking out social contacts. Yet by age 10, none of the girls had reciprocal friendships while some of the boys did. “The girls often have the potential to really develop relationships,’ says Lord, a psychology and psychiatry professor and director of the Autism and Communication Disorders Center at the University of Michigan. “But by middle school, a subset of them is literally dumbstruck by anxiety. They do things like bursting into tears or lashing out in school, which make them very conspicuous. Their behavior really doesn’t jibe with what’s expected of girls. And that makes their lives very hard.”
No doubt part of the problem for autistic girls is the rising level of social interaction that comes in middle school. Girls’ networks become intricate and demanding, and friendships often hinge on attention to feelings and lots of rapid and nuanced communication — in person, by cellphone or Instant Messenger. No matter how much they want to connect, autistic girls are not good at empathy and conversation, and they find themselves locked out, seemingly even more than boys do. At the University of Texas Medical School, Katherine Loveland, a psychiatry professor, recently compared 700 autistic boys and 300 autistic girls and found that while the boys’ “abnormal communications” decreased as I.Q. scores rose, the girls’ did not. “Girls will have more trouble with social networks if they’re having greater difficulty with communication and language,” she says.
And so girls with autism and normal intelligence may end up at a particular disadvantage. In a new study published in May, a group of German researchers compared 23 high-functioning autistic girls with 23 high-functioning boys between the ages of 5 and 20, matching them for age, I.Q. and autism diagnosis. Parents reported more problems for girls involving peer relations, maturity, social independence and attention.
The difficulty may continue into adulthood. While some men with Asperger’s marry and have families, women almost never do, psychiatrists observe. A 2004 study by two prominent British researchers, Michael Rutter and Patricia Howlin, followed 68 high-functioning autistics over more than two decades. The group included only seven women, too small a sample to reach solid conclusions about gender differences, Rutter and Howlin caution. But 15 men — 22 percent of the sample — rated “good” or “very good” for educational attainment, employment, relationships and independent living, while no women did. Two women rated “fair,” compared with 11 men, and the other five women were counted as “poor” or “very poor.” None had gone to college. None reported having friends or living on their own. Only one had a job. Undermined by anxiety and depression, women with autism appear to be more often confined to the small world of their families.
When Caitlyn started kindergarten and didn’t play normally with other kids, her mother, Juli, thought it was because she hadn’t gone to preschool. The first warning of real trouble came from the first-grade gym teacher, who told Juli that Caitlyn exposed herself to the class. Caitlyn is overweight, and she has always been private about her body. Juli couldn’t imagine her daughter taking off her clothes in public, and when she asked what had happened, Caitlyn said another girl had pulled down her pants. “Caitlyn stood there mortified,” Juli says. “But she couldn’t express that to the teacher.”
Caitlyn lives with her mother, her older sister, the girls’ great-grandparents and a pair of poodles in Farmington , outside of Salt Lake City . (Her father died before she was 2.) Until second grade, Caitlyn had a neighborhood friend with whom she went to school. Other than that, she was often alone in class. Her teachers were frequently frustrated with her inability to work and play in groups. But she connected with a few adults — in fifth grade, one class aide took her horseback riding, and the school librarian gave Caitlyn her own copy of “Spindle’s End,” a retelling of “Sleeping Beauty,” “because she said I helped her so much,” Caitlyn remembers.
Contrary to the Asperger’s stereotype, Caitlyn struggles in math but tests in the highly gifted range in reading and writing. This is another sex difference that Lord sees among her patients. “I don’t have any real data, but a lot of high-functioning girls are real readers — not great on subtleties, but they like fantasies and the ‘Baby-Sitters’ series,” she says. “The boys are much less so.”
In elementary school, Caitlyn went to special-education classes for math and social skills. At 11, as other girls began to slip out of reach, Asperger’s was diagnosed. The shift a year later to junior high for seventh grade was a jolt. By the second week of school, a few boys were mocking Caitlyn’s weight and calling her weird while other kids laughed. “No one would sit by me at lunch,” Caitlyn says. Girls told her that they didn’t want her to be in their reading group. Caitlyn did her homework, but she was too anxious to walk to the front of the room to turn it in. At home, her neighborhood friend no longer came out to play.
In the winter, Caitlyn switched from a special-education math class into a mainstream one, and the kids in her new class made her miserable. For days she refused to go to school. She told Lainhart: “No one likes me at lunch. I’m very sad.” (With Juli’s and Caitlyn’s permission, I read Lainhart’s notes on Caitlyn’s treatment.) After a huge outburst of anger at home, Caitlyn told her mother that she wanted to die. At her next appointment with Lainhart, she said: “I listen to people’s conversations during free time in science. They talk about live games, R-rated movies, outfits. I feel left out.” Caitlyn told Lainhart about two dreams. In one, her school had a bridge running through it, and she kept falling off. In the second, she was in the lunchroom throwing a party; no one came. Lainhart says that while boys are aware of rejection and bullying, in her experience they are not hurt by it to the extent that some girls are. “I have rarely had a male patient with autism become suicidal or express such intense emotional pain,” she says.
Caitlyn has never hit another child. But at school, her retorts to her peers — “I yelled at a . . . little bimbo. They yelled at me,” she told Lainhart during one appointment — pushed them further away. With Lainhart’s help, Juli persuaded the school to let her daughter eat lunch in a classroom rather than in the cafeteria. Still, Caitlyn’s grades dropped from A’s and B’s to D’s and F’s. Her anxiety level spiked, and her sadness bloomed into depression.
Lainhart has seen the same blend of anxiety and depression in other female patients. Like Caitlyn, Marguerite’s serious problems date from middle school. In sixth grade, she moved to Salt Lake City and away from a couple of strong friendships, and she couldn’t replace them. “She found it increasingly difficult to do the things necessary to maintain friendships with ‘normal’ kids,” her father says. Last fall, at 15, she withdrew further. An olive-skinned girl with thick brown hair — she was adopted from Guatemala as a baby — Marguerite has always liked to go shopping and wear pretty things (not a typical trait for a girl with autism, though not unique either). But she stopped dressing herself, washing her hair and going to school. For months, Marguerite spiraled into one of the worst bouts of depression Lainhart has ever seen.
Since 1990, when she was recruited to work with autistic children by Susan Folstein, a prominent Johns Hopkins researcher, Lainhart has been interested in the relationship between autism and depression. In a 1994 paper, Lainhart and Folstein pointed out that despite the 4-to-1 male-female ratio for autism, females made up half the autistic patients with mood disorders described in the medical literature. The case reports may not represent the population as a whole; still, the overrepresentation is suggestive. Lainhart is currently looking at the relationship between autism and depression in boys and girls and the potential link to depression in their parents and siblings. “We know that anxiety and depression are co-morbid,” meaning that they occur together, Lainhart says. “And we know that depression is worse for women in the general population. But what’s the link to autism? And is it worse for girls?”
Social anxiety affects Lainhart’s female patients into adulthood. Liz Lee, who is 43, is studying for her master’s degree in electrical engineering, yet she cannot cope with going to lunch with the other graduate students at the lab where she works. Ash Baxter, who is 22, spends hours making art, sewing dolls with wild yarn hair and macramé-edged suits; she created an extraordinary blue-and-gold octopus mask out of a three-foot gourd she found in the garage. She is talented and would like to attend art school, but Baxter can’t master her anxiety well enough to learn to drive or live in a dorm, so college art classes remain out of reach. Another patient, Charlotte (she asked that I not use her last name) is 23 and goes to a social-skills class that Lainhart runs for her patients in their late teens and early 20s. Because of the dearth of females, the class is mostly male, and Charlotte often leaves in the middle saying she’s “stressed out.” “She can only take so much,” her mother told me. Lainhart says, “You see these incredible areas of anxiety in Liz and Charlotte and Marguerite that don’t seem to have a parallel in the boys and men.”
There is preliminary evidence that girls and women also vary from the male Asperger’s profile in terms of their interests, as Catherine Lord suggests. David Skuse, a psychiatry professor at the Institute of Child Health at University College London, has analyzed data from 1,000 children, 700 of them on the autistic spectrum. “Girls with autism are rarely fascinated with numbers and rarely have stores of arcane knowledge, and this is reflected in the interests of females in the general population,” Skuse explains. “The girls are strikingly different from the boys in this respect.”
With her high aptitude for reading and writing and her difficulties with math, Caitlyn fits Skuse’s model. Even as she was failing school last year, she kept up her fan fiction, posting stories she had written on the Web site Gaia Online. On the 40-mile drive home from camp, she told me about her plan to write an original eight-book fantasy series about a werewolf, to be called “Midnight Wind.”
One of the best-known theorists on sex difference and autism, Simon Baron-Cohen, comes at these questions from another angle. A psychology professor and director of the Autism Research Centre at Cambridge University, Baron-Cohen has characterized autism as a condition of the “extreme male brain.” His research shows that in the general population men are more likely than women to score low on a test of empathy and high on a test of recognizing rules and patterns, or “systemizing.” High systemizing together with low empathy correlates with social and communication deficits and, at the extreme end of the scale, with autism. Baron-Cohen is currently studying whether elevated levels of fetal testosterone — a prime driver of masculinity — are linked to autistic traits.
Baron-Cohen says that he believes that autistic girls are strong systemizers. That quality may manifest itself in letters rather than numbers. But in his view, the thought processes for Asperger’s girls mirror those of boys. He explains, “These females often feel more compatibility with typical males simply because typical males may be more willing to adhere to the linear, step-by-step form of thinking and conversation — more like debating or playing chess or doing logic.”
To Lainhart, Baron-Cohen’s extreme-male-brain theory is an apt description for a subset of her female patients, for example Liz Lee, who in pursuing electrical engineering is training for a classic Asperger’s profession. Lee is socially aloof: she usually sits on the floor with her back to Lainhart during their sessions, twirling the propeller of a toy helicopter. Eye contact makes Lee angry, and she says she would like to live alone in the desert.
But based on their clinical experience, Lainhart and also Skuse see autism as a heterogeneous disorder. Its profile may change and expand as more is understood about girls, whose autism, they worry, often goes undiagnosed. That is partly, Skuse posits, because girls’ general aptitude for communication and their social competence helps some Asperger’s girls “pass” — they pick up on their difference and carefully mask it by mimicking other girls’ speech and manner and dress. In a sense, their femaleness allows some girls to seem less autistic. It is as if they start off with a social advantage — Skuse sees this as a 20-point bonus on a scale of 100 — that helps counter the disorder. This idea isn’t necessarily at odds with the findings that show girls to be more seriously affected by autism, Skuse says, because the girls who succeed in masking their deficit wouldn’t be included in studies. And so they are missing from the picture. “There is no doubt in my mind that the way we have defined autism currently biases our assessments strongly in the direction of identifying a male stereotype,” he says. The C.D.C. agrees and says that as a result the estimate for the number of girls with autism and normal intelligence may be low.
Why would autism express itself differently depending on sex? The short answer is that no one knows. Genetic researchers, however, have just begun to hint at possibilities. In the last two years, new data-pooling efforts have yielded two major genetic-linkage studies — attempts to link autism to specific chromosomes — that suggest that some of the genes underlying autism may be different in males and females. By isolating sex as a variable, scientists are seeing potential genetic hot spots for autism. “By comparing males and females, we will have a much better chance of discovering the causes of autism,” says Geraldine Dawson, a psychology professor and director of the University of Washington Autism Center, who was a co-author of one of the studies.
Studies that use the latest brain-scanning tools — magnetic resonance imaging and diffusion tensor imaging — generally focus on boys. But a single study of M.R.I.’s of both boys and girls found differences in their brain anatomy. Published in April in The Journal of the American Academy of Child and Adolescent Psychiatry, the study compared nine girls and 27 boys who were matched for age, I.Q. and severity of autism. Other research has established some correlation between abnormally large brain size and autism; the April paper reported that the brain volume of the autistic girls deviated from the norm more than the volume of the autistic boys. Lainhart, who is a member of the University of Utah ’s Brain Institute, has measured head circumference as a proxy for brain volume. (The two are linked.) In a 1997 paper, she reported that the mean head circumference of eight autistic girls at birth was significantly greater than the norm, whereas the mean head size of 37 autistic boys was not.
These are small and preliminary studies, but their findings may relate to a puzzle of autism: while overall, there are more mentally retarded autistic boys than girls, a greater proportion of autistic girls are retarded — 58 percent compared with 42 percent for boys, according to the C.D.C. As for Asperger’s girls, Lainhart, who continues to conduct brain research, says she hopes eventually to shed light on the deficits of girls like Caitlyn and Marguerite and suggest new treatments for them. “In children with dyslexia, scientists identified where the basic cognitive deficits were,” she says. “Then they intervened to go after those deficits, and they saw the brain change in those areas.”
In the meantime, girls with autism and normal I.Q.’s pose a particular challenge for schools. Though mainstreaming has its benefits, autistic kids risk becoming outcasts in a regular classroom. Yet if girls go to a special-education program or a separate school, they are often swimming in a sea of boys. Lord pointed to this as a factor in girls’ lack of friendships in her 1993 study. When the girls in her sample were shifted to specialized programs, “their opportunities to meet girls and women with some common interests were even more limited than those of the boys and men,” she wrote.
The Harbour School in Baltimore has tried to address this predicament. The school has 120 students, all with learning disabilities, speech impairments, attention-deficit disorders and autistic-spectrum disorders. Only 19 of them are girls, which leaves one or two in each class from first to 12th grade. (More boys than girls are also diagnosed with the hyperactive form of A.D.D. and some learning disabilities.) Along with the playful Baltimore street scenes that decorate the walls of the hallways at Harbour, the predominance of gangly male bodies and loud voices was the first thing I noticed on a recent visit. The school felt like a haven — for boys.
And so I wondered whether the girls would feel overwhelmed, as Charlotte often is at her mostly male social-skills class. In the school auditorium at about 9 a.m., there were 13 sixth graders — 12 boys and a single girl, Krissy, whose clinical designation is pervasive developmental disorder on the autistic spectrum. She was sitting on the floor playing Connect Four with one of the boys. She won her game, smiled without looking at her opponent, then got up and walked across the room to another of her classmates.
“Hi, Michael,” she said. He didn’t look up. Krissy sat down next to him and watched him play on his Game Boy. They talked quietly about his progress; she knew the game. A few minutes later, she found her Connect Four partner again, and they decided to play Operation. They talked about the rules, but when Krissy tripped the buzzer, he let her finish taking out the body parts she was maneuvering. Krissy declared victory and moved on again, this time to lie on the floor next to a boy who was building with metal rods and blue glass balls.
“Do you need help?” she asked him.
“No,” he answered.
“Can I at least play with you?” Krissy persisted. The boy grunted. Without talking more, they each built a structure.
Krissy has been at Harbour since first grade, and the small size of her class means that she knows the boys well. Her teachers say she is at ease with them because she shares their Game Boy enthusiasm and watches the same movies. But sometimes Krissy’s interests seem entirely girlish. She was excited about straightening her hair and then styling it into corkscrew curls for her interview with me and showed off pictures she had drawn of princesses, covered with hearts.
Harbour makes a concerted effort to give its girls the chance to develop relationships with one another. The girls’ lunch periods coincide to give them time together. A social worker, Kelli Remmel, runs a regular “girls club” for a group of about half a dozen. “There are some things the girls don’t want to discuss in front of their male peers,” she says. “It’s a chance for them to talk about boys, how to handle hormonal changes, other girls, their bodies, dating.”
Krissy seems to be getting the social opportunities and support that Lord and Lainhart want for the girls they treat. Salt Lake City has good schools for kids with Asperger’s, Lainhart says, but the catch is money. School districts in Maryland , Washington and Virginia pay Harbour’s tuition for more than 95 percent of the students. But districts in many parts of the country — including Utah — don’t pay for private-school placements for kids with Asperger’s. Caitlyn doesn’t go to a school like Harbour because her family can’t afford it; her experience, not Krissy’s, is typical.
Lord and Lainhart try to help by setting up social-skills groups for their patients. But families must pay for the classes out of pocket because medical insurers generally don’t pay for treatment and services that focus on autism — a terrible problem for her patients, Lainhart says. So the groups tend to meet only a couple of times a month for a few hours. Charlotte doesn’t know the boys in her group the way Krissy knows her classmates. At the University of Michigan , Lord runs co-ed groups for younger children and then tries to put together groups of older girls that mix autistic and nonautistic kids. As the girls get older, it is harder to find normally developing girls who want to participate. Twenty years ago, as a clinical psychologist in Canada , Lord started a group of four Asperger’s girls who stayed in touch into adulthood. They called themselves the highest-functioning autistic women in Canada , she remembers, and treasured their solidarity. “It’s striking how much girls with autism can care about each other and other people and develop friendships that are really a source of joy for them,” Lord says. “But when I think of the teenage girls I know, many of them have no shot at forming those relationships.”
At the Hawks Camp in Utah , Caitlyn and Marguerite didn’t become friends. A week earlier, Marguerite and Lainhart had made a list of conversation starters, but Marguerite didn’t really use them. Caitlyn didn’t try to talk to her much, either. The camp lasted only a week; for these girls, not long enough for bonding. Still, Caitlyn said it was the best week of her year. One day after lunch, the Hawks campers drove in two minivans to a nearby lakefront to go tubing and Jet Skiing. Caitlyn changed into her bathing suit, then wrapped herself in a towel despite the strong hot sun. “Do I look O.K.?” she asked a counselor. “It’s just that there are so many people.”
But the other kids were paying Caitlyn no mind. This wasn’t a group that Caitlyn had to fear. She balled her hands into fists, visibly holding her anxiety at bay. “Sometimes I feel like I’m weird and ugly,” she said, “but I’m not going to today. I’m confident!” She strode out to Jet Ski and later returned with a description that she planned to use in a future story: “It was like riding a dragon through the storm.”
Back at camp, the Hawks poured onto the playground. During the school year, Caitlyn had been excused from gym class because she was so nervous about changing her clothes and running around in front of her classmates. As she sat on a swing and watched kids play tag, a counselor named Claire came over. As she and Caitlyn talked, Caitlyn did all the tiny things that people do to engage one another, smiling, laughing, gesturing, looking Claire in the eye. Claire urged her to join the game and called out, “Caitlyn’s playing!” Caitlyn protested. But Claire persisted, and finally Caitlyn yelled, “O.K., where’s the base?” A teenage boy pointed to the monkey bars, and Caitlyn ran for it. Her glasses slipped off her nose, and her shorts slipped a bit, too. She hiked them up and kept running, surrounded by other kids. Sweating and laughing, she yelled, “Safe!”
Emily Bazelon is an editor of the online publication Slate. Her last article for the magazine was about the grass-roots pro-life movement.
A way to keep your EYE on your KIDS
Trish K ordered a kit and will keep you posted on how she likes it
Family Claims Airline Put Autistic Son In Harm's Way
POSTED: 8:28 am PDT August 7, 2007
UPDATED: 8:38 am PDT August 7, 2007
The parents of a 22-year-old man claimed their son was kicked off a non-stop Southwest Airlines flight to Chicago because he has autism.
Nick Andrews said he was removed from a non-stop Southwest Airlines flight from Portland to Chicago after explaining the mechanics of jet planes to nearby passengers.
“Just told me, ‘Sir, we’re going to need you to step off the plane,’” said Andrews. “I think they may have been scared of me.”
Because of Andrews’ autism, he fixates on things such as airplanes and loves to talk about them.
“I focus on lots of things like carpet cleaners, power engines and jetliners,” Andrews said.
The family claimed that after they put Andrews on the plane to Chicago and made sure he was safe, employees removed him and placed him on connecting flights from Portland to Oakland to Ontario to Phoenix, and finally to Chicago.
A flight that was supposed to take a few hours took 12.
“We had no idea for several hours where he was. He could’ve ended up anywhere in America,” said Andrews’ dad, Dixon.
Southwest Airlines issued a statement, saying, “We deeply regret the inconvenience Nicholas suffered. It appears our flight attendants and employees working at the departure gate were unaware that Nicholas has autism. Without knowing the reason for Nicholas' behavior, our employees had no choice except to make the best decision possible with the information available.”
The family said they are asking for a formal apology from the airlines.
From a Listmate
Web is new battleground for fall provincial vote
Aug 06, 2007 04:30 AM
This fall's provincial election will be fought not only the old-fashioned way – over the airwaves and on the ground; effectively for the first time in Ontario, the battle will also take place on the Internet.
All the parties have websites and are putting increasing emphasis on them. And there is a plethora of interest groups with websites, ranging from property taxpayers to parents of autistic children, as well as individual bloggers and postings on YouTube and Facebook. Combined, they are reaching hundreds of thousands of voters.
Credit – or blame – Joe Trippi. He's the guy who managed Howard Dean's presidential campaign in 2003-04 and used the Internet to take his candidate from also-ran status to frontrunner within a matter of months.
Trippi was in town last week to give advice to the provincial Green party, among others.
The Internet provides "a big opportunity" for non-establishment parties like the Greens, said Trippi in an interview. For example, they can take advantage of YouTube as a substitute for television ads, which are out of their financial reach.
"You can put a really powerful video on YouTube and hundreds of thousands of Canadians can watch it, (but) it doesn't cost you a penny," said Trippi.
"The same tool set exists for the Conservatives and Liberals, but they have money to do it another way, so they're not as adept at levering these new tools."
Maybe so, but Liberal and Conservative operatives have read Trippi's book (The Revolution Will Not Be Televised) and are applying some of his principles to their own Internet campaigns.
In the book, Trippi refers to the power of "concentric circles," or "the idea that you could spread a candidate or a cause or any issue like a virus – starting with a small, key group of people and letting them run wild for you."
Accordingly, the Dean website became interactive, with links to other sites, like meetup.com, and interest in the candidate started to snowball.
"The Internet was like concentric circles on steroids," writes Trippi.
Both the Conservatives and Liberals have adopted some of Trippi's thinking in their websites.
The Conservative site – www.leadershipmatters.ca – includes a blog by party leader John Tory and an invitation to visitors to offer their own commentary. Even negative comments are posted.
"You can't get people engaged if you're not prepared to allow for political discourse," explains a party spokesperson.
The Liberal site (www.dalton.ca) is full of YouTube-style videos in which Premier Dalton McGuinty talks about himself and frankly addresses his broken promises.
In launching the site, the Liberals reached out to about 20 bloggers to encourage them to provide links to dalton.ca. It seems to have worked, as the Liberals claim more than 30,000 people have visited the site since it was launched a month ago.
The New Democrats also plan to launch an edgy new website shortly. It will likely include a blog by their leader, Howard Hampton.
But all this effort may pale in comparison to what the Americans call a "macaca moment" – where an amateur video capturing a candidate in an unguarded moment is posted on YouTube and effectively destroys the campaign.
This is a reference to George Allen, a Republican senator whose re-election campaign was torpedoed last year by a YouTube video showing him calling somebody a "macaca."
"That moment is going to happen here," said Trippi last week. "It's just a matter of time."
McGuinty, Tory and Hampton can only hope it's after the Oct. 10 vote.
From a Listmate
Holy Name community raised plenty to fight autism in spring
By Bill Rea
The community of Holy Name Catholic School in King City spent a week in the spring raising funds in their Toonies for Autism drive.
And the amount raised was well in excess of the $1,800 mark
The effort was spearheaded by two education assistants at the school, Kim Parcells and Kristy McCague.
McCague said this was the second year the school has run such a campaign, and Parcells was quick to add things have gone a lot better this time. They raised about $850 last year.
The events started on the Monday with the showing of a video from the Autism Society of Ontario. The Tuesday saw the sale of hot dogs at the school, and the Wednesday it was ice cream sandwiches. All those food items were donated from the community, they added. the Thursday saw showing of a couple of movies, with students buying tickets and popcorn. They saw Flushed Away and Pursuit of Happiness. The Friday featured a silent auction for staff, while students bought pieces of a jigsaw puzzle (the symbol for autism) in lieu of raffle tickets for a host of donated prizes that were available.
Principal Beverley Coles said there was "tremendous outpouring from the community in terms of donating."
"It really brought us together as a community," she added.
McCague said the effort was inspired by the fact there are several autistic children in the school community.
"It's near and dear to our hearts," Parcells added.
Coming to Kitchener Ontario (near Niagra Falls) Sept 29
For parents, care givers, educators and practitioners
Presented by Great Plains Laboratory
A comprehensive bimedical treatment approach for Autism, PDD, and behavior disorders.
Read about the very wonderful speakers and take advantage of the Earlybird Registration Special at:
Remaining seats are going fast.
Shared by a listmate, a book dedicated to her (the listmates) two boys on the spectrum....
. “I have committed all the money collected from the sale of my book Missing Pieces to the Autism Spectrum Disorders Society of Ontario,” she added.
Book helps survivor process memories
By CYNTHIA GASNER, Special to The CJN
Thursday, 09 August 2007
Many children who survived the Holocaust have never had the opportunity to piece together the fragments of their horrific memories.
Their loved ones tried to shelter them, feeling that children were too young to understand what they experienced. As a result, they carried with them painful, unanswered questions.
“When I was seven years old, my world came tumbling down, and throughout my life, the smallest thing triggers my anxiety and depression and leaves me helpless and paralyzed with fear,” said 71-year-old, Hungarian-born Olga Verrall.
Her 244-page book, Missing Pieces: My Life as a Child Survivor of the Holocaust, was published recently by the University of Calgary Press’ Legacies Shared series.
Her suppressed memories of the loss of her home, the loss of her most loved possession, the loss of her confidence that her parents could protect her, the vicious rape of her mother by a high-ranking SS officer, the suicide of her Jewish friend’s family, and her transfer of fear from the Nazis to the Communists, all deeply affected her life in Canada.
Despite the love that she found in this country, the ghosts of Verrall’s childhood manifested themselves in bouts of psychiatric depression and hospitalization.
Missing Pieces is her search for validation. She describes the pain she experienced here, as well as her courage to try to understand the source of her emptiness juxtaposed with feelings of joy and optimism.
Verrall was born in 1936 in the small town of Szarvas, the fourth child after three boys, to Laszlo and Mariska Berger. Her father was a successful grain merchant, and her early years were idyllic and free of anti-Semitism.
“In 1944, we heard from people who escaped the Nazis what was happening, but for some time, my parents, grandparents and others could not believe it was happening,” she said.
The day the Nazis came to remove the Bergers from their home was a pivotal experience in Verrall’s life, and it shook her so badly that it still haunts her to this day, she said.
“I remember clearly that the German soldiers were waiting for us at the gate of our house. We could take only one possession, and I was carrying my doll Pani, who was always with me. I believe that my mother told me to go back to the house to get a jacket, as it was getting cold and I wanted to get something to cover my Pani,” Verrall said.
“I placed Pani on a table at the gate and when I returned, Pani was gone and the soldiers were laughing. I broke down crying and screaming and said I wanted to die. At the age of eight, it was a most significant loss which affected my entire life.”
Her family was taken to a ghetto in the spring of 1944. They were interned in the Auspitz labour camp.
“Our lives were saved when an acquaintance of my grandfather whispered into his ear that if the Germans asked if anyone had any skills, he should raise his hand,” Verrall said. “My grandfather obeyed this man’s instructions and subsequently, this definitely prolonged the lives of my family.”
Her grandfather later died of starvation.
After they were liberated on April 13, 1945, the Berger family returned to Szarvas and later moved to Budapest. Under Communist rule, the family changed its name to Barsony to deflect attention from the fact they were Jews. She describes this part of her life as another time of persecution.
In 1957, she immigrated to Winnipeg, where other members of her family had already settled. Soon after, she met and married Orland Verrall, the cantor at Rosh Pina Synagogue. She said it was love at first sight.
Being the wife of a clergyman, the birth of their two daughters, Judy and Lesley, and an active communal life brought some contentment and security, but deep inside, insecurity and emptiness would erupt from time to time.
When her husband retired from the synagogue, the Verralls moved to Toronto. In 1992, her husband died and Olga again faced emotional trauma and felt a need to search for meaning and an understanding of her troubled childhood.
She took courses, organized a widows’ and widowers’ group at Beth Tzedec Congregation, and began doing volunteer work at Baycrest that she has continued.
Her search for understanding took her back to Hungary three times. On her third visit, she decided to begin documenting her childhood memories and their effect on her life.
For six years, Verrall painstakingly wrote the book by hand, chapter by chapter, as she looked for the missing pieces of her childhood.
She told The CJN that her early years have given her a deep sensitivity for children who suffer. “I have committed all the money collected from the sale of my book Missing Pieces to the Autism Spectrum Disorders Society of Ontario,” she added.
From the smile on her face, it’s hard to believe that Verrall lived a life of anguish.
“My life purpose is to smile. It makes people smile back. And I have learned that life is the greatest miracle.”
End of Mailing for August 9th, 2007