+ April 2, 2008 Designated the First Autism Awareness Day by UN

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Autism is on the rise.  In the US, diagnoses have increased to 1 in 150 children, according to the Centers for Disease Control (CDC).

Addressing the disorder as a global health issue, the General Assembly of the United Nations has designated April 2 as World Autism Awareness Day in perpetuity, beginning in 2008.

The Sundance Channel will present the US television premiere of Lauren Thierry’s documentary “Autism Every Day” on April 2, 2008.  The times are scheduled as 8 PM ET/PT.

This film, which debuted at the 2007 Sundance Film Festival, documents a “typical” 24-hour day in the lives of eight families struggling to raise children with autism.

The film has met with virulent anger from some in the Autism community, for the footage of difficult moments, which is said to have been set-up and showcased.  Petitions are being signed.

Lauren Thierry is herself the mother of a child with autism.  In “Autism Every Day,” she shows the struggles parents of children with autism face every moment of the day.

She goes inside the homes of eight diverse families doing their best to cope with a perplexing disorder that completely dominates their lives.  “Autism Every Day” shows how developmental skills that most parents take for granted — a child’s ability to brush his teeth or communicate a need — can prove enormous hurdles for an autistic child.

Thierry feels the film captures the unconditional, powerful love these parents feel for their children and their determination to provide them with the best care possible.  Others, however, have read the message differently and feel the film paints a far too dark picture of living with autism. 

“Autism Every Day” was produced by Autism Speaks, the nation’s largest advocacy organization.

source: www.earthtimes.org on 2/13/08.

tutoring in Columbus OH:   Adrienne Edwards   614-579-6021   or email  aedwardstutor@columbus.rr.com     

+ “Autism, The Musical” is on the Oscar Short List for Documentaries

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Here is an article from The Hollywood reporter by Michael Rechtshaffen:

PALM SPRINGS, California (Hollywood Reporter) – Well-deserving of its slot on the Academy Awards shortlist for best documentary, “Autism: The Musical” is a moving testament to love and hope in the face of a diagnosis that seems to be reaching epidemic proportions.

While the five remarkable young performers spotlighted in Tricia Regan’s film exhibit types of behavior that are as wide-ranging as the long-impenetrable neurological disorder itself, they share a diligent support group in the form of family members and the passionate acting teacher who has found a way to tap into their inner world.

In fact, the main attraction is beside the point, as Regan is less concerned with the actual show these kids put on than with the intriguing steps taken to get them there over the course of a six-month period.

Slated to air on HBO in April, the film also merits theatrical exposure, especially if it makes the cut when Oscar nominations are announced January 22.

Aside from pointing out the unsettling fact that autism was diagnosed in 1 in 10,000 children in 1980 but today affects 1 in about 150 American children, the film dispenses with statistics and factoids in favor of a more intimate approach.

First we meet Elaine Hall, a former TV drama coach who redirected her professional energies after her son, Neal, was diagnosed with a severe form of autism.

Upon discovering that bringing in creative people — such as actors, writers and musicians — to engage her son proved more successful than traditional therapies, Hall developed the Miracle Project, a musical theater program catering to both special-needs and developmentally on-track kids.

Joining now-12-year-old Neal in that first category are four other fascinating children, including 14-year-old Lexi, who looks like a typical teen and sings like a Broadway baby; sensitive, articulate-beyond-his-years Wyatt; resident dinosaur expert Henry, who turns out to be Stephen Stills’ son; and 9-year-old cello virtuoso Adam.

Watching Coach E. unlock some of those doors and windows into the kids’ closely guarded inner lives is as absorbing as hearing their parents’ fears and frustrations is heartbreaking.

And as is Regan’s and Hall’s intention, that journey to opening night ultimately proves more rewarding than whatever transpires after the curtain comes up.

source: article by Michael Rechtshaffen, from the Hollywood reporter via Reuters on 1/14/08.  www.reuters.com 

tutoring in Columbus OH:   Adrienne Edwards   614-579-6021   or email  aedwardstutor@columbus.rr.com  

+ Rare Genetic Link to Autism Increases Risk

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Carey Goldberg, in the Boston Globe, writes:

Boston-based autism researchers have pinpointed a genetic hot spot where DNA errors appear to increase a child’s chances of developing autism one-hundred-fold.

The discovery, reported online in the New England Journal of Medicine yesterday, stems from the most extensive genome scanning for autism done so far. The scans found that in just over 1 percent of people with autism, a chunk of about 25 genes had been either duplicated or deleted, mainly in spontaneous mutations not carried by their parents.

Some researchers believe that such errors help explain how autism can often crop up in families seemingly out of nowhere. Diagnoses of autism have skyrocketed in recent years, and the disorder now affects an estimated 1 in 150 American children.

“It’s like having a recipe where you take some of the ingredients and use half as much or twice as much,” said Dr. David T. Miller of Children’s Hospital Boston. “It’s going to change how the recipe turns out.”

One percent may sound small, Miller said. But “it is significant in terms of getting another piece of the puzzle solved,” he said, a puzzle that has largely stymied researchers even as parents have pleaded for answers and cures.

The findings also hold the promise that other hot spots will be found, explaining a much larger portion of autism cases. There is also hope that studying the genes involved will cast light on what goes wrong in autism, possibly leading to new treatments.

The hot-spot paper is the first major publication by a broad new Boston group, the Autism Consortium, that brings together families, doctors, and researchers to try to crack the complex questions of autism. Autism, a spectrum of social and communication disorders that usually begin in early childhood, is seen as largely genetic, but researchers have not yet found genetic smoking guns.

The collaboration helped speed the hot-spot research and bring it quickly into use for genetic diagnoses, said Mark J. Daly of Massachusetts General Hospital, the paper’s senior author.

“In genetics, it’s almost unprecedented to have an initial scientific finding so immediately validated in active clinical samples and to see relevant diagnostic information fed back to clinicians and families,” he said.

Using new, high-resolution gene tests, Miller, working with a team at Children’s, noticed the hot spot in a few patients a year ago, he said, but he could only tell their parents, “Well, we found something,” but “we don’t quite know what it means.”

Meanwhile, Daly and his colleagues at Mass. General were using the new generation of gene scans on DNA samples from families with autistic children nationwide, seeking new genetic culprits. Among hundreds of children from that nationwide sample and hundreds more who had been tested at Children’s, they found mutations in an area of Chromosome 16 in about 1 percent of those with autism.

They were able to confirm their findings in the extensive DNA samples gathered in recent years in Iceland. Analysis of Icelandic samples showed mutations in the hot spot in 1 percent of people with autism; one-tenth of 1 percent in people with different language or psychiatric problems; and just one one-hundredth of 1 percent in the general population.

For Morrie and Robin Lewin of Grafton, the hot-spot findings have personal relevance. Their 10-year-old twins – Nathaniel and Austin, who are developmentally delayed – both tested positive for mutations in the key hot-spot area when Miller had their genes tested. At first, he could not tell them what that meant; now he can identify a likely factor in their problems.

“For us, it basically means that we now have a diagnosis,” Robin Lewin said, “and sometimes that makes it easier when you’re trying to get services for your child.”

The boys have none of the classic social symptoms of autism, she said, but it could help that she can say they have “this new chromosomal disorder.”

The findings could also help other parents as they make family-planning decisions, Miller said. When parents have one autistic child, their chances of having another one are about 5 percent. But if testing shows that a parent has the mutation and could thus pass it down, the chance of having another autistic child could be as high as 50 percent, he said.

More generally, he said, “one of the things parents struggle with is, ‘Why does my child have autism? Was it something I did? Was it something I didn’t do?’ “

New genetic findings, he said, can help parents know “there really was another explanation they had nothing to do with.”

Scientists have no explanation for why such spontaneous mutations happen, said Miller, other than that they seem to occur randomly during the complex reshuffling of parental genes in earliest development and that certain spots are especially susceptible to it. Certain toxins are known to increase the likelihood of spontaneous genetic mutations.

The hot-spot paper is extremely well done, said Michael Wigler of Cold Spring Harbor Laboratory in New York, who was not involved with it but works on genetic hot spots himself.

Last year, Wigler and his team published a paper boldly predicting that, as the resolution of gene scans improves and as more new mutations can be detected, they will turn out to explain some 75 percent of autism cases. “I predict we will find many more new mutations causing severe cognitive disorders,” he said.

source: Boston Globe article by Carey Goldberg on 1/10/08.  www.boston.com Carey Goldberg can be reached at goldberg@globe.com. 

tutoring in Columbus OH:   Adrienne Edwards   614-579-6021   or email  aedwardstutor@columbus.rr.com

+ Asperger’s Documentary: A Family Film

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I think the wind created me,” says Nicky Gottlieb, the subject of “Today’s Man,” a documentary that premiered on PBS stations. Mr. Gottlieb, who in the film offers his theory of how the world was formed, has Asperger’s syndrome, a form of autism, and his sister, Lizzie Gottlieb, spent six years committing his life to film. She depicts a highly intelligent man addicted to television, socially inappropriate, self-aware about his condition and negotiating the world with both humor and bewilderment.

“Physically, I’m a man,” Mr. Gottlieb says at the beginning of “Today’s Man,” which tracks his quest, beginning at 21, to hold a job, get an apartment, make friends. “But mentally and emotionally, I’m a boy; I’m still a child.”

His mother, the actress Maria Tucci, has to remind Mr. Gottlieb to shower, for example. We see his father, Robert Gottlieb, a dance critic for The New York Observer and a former editor in chief of The New Yorker, lovingly shaving a son who is often too distracted for that task.

In another scene the younger Mr. Gottlieb, now 29, confides to his sister that he likes “the perks” of living at home.

“What is our future going to be like?” Ms. Gottlieb, 36, asks him, her only sibling. “I mean, what are you and I going to do when Mommy and Daddy aren’t around? What do you want your life to be like?”

Ms. Gottlieb and her parents are haunted by that question about her brother’s future, she said in a recent interview. His life and the intensity of their family journey pushed her to make the film, casting light on an adult with Asperger’s, a neurobiological condition.

People with the syndrome show a wide range of intelligence — some are brilliant — but characteristically have intense, narrow interests; odd speech patterns; and few social skills, among other symptoms. Often they seem to lack the ability to bond with others.

Mr. Gottlieb is high-functioning, bright enough to give Italian lessons and tutor students in math. He was a late talker, but at around 4 or 5 he would ask people their birth dates and instantly tell each of them the day of the week on which the date fell.

“As a child, I thought I had this magical brother,” Ms. Gottlieb said. “We assumed there was no one else in the world like him. It’s harder now, as it became clearer that there is no magical answer to Nicky’s problems.” He still lives at home, she said, but is now seeing a young woman with Asperger’s.

Ms. Gottlieb, a theater and film director who was a founder and producer of Pure Orange Productions, a theater company for new Off Broadway plays, has taken “Today’s Man” to several film festivals (Margaret Mead, Nantucket, Mendocino). Mr. Gottlieb has accompanied her to about 20 screenings.

“Today’s Man,” part of the “Independent Lens” series on PBS, can be seen in New York on Friday. PBS’s Web site pbs.org/todaysman has information about the film and links to resources.

The Gottlieb family coped without such help. Asperger’s syndrome was not diagnosed until Mr. Gottlieb was about 20, following years of various therapies, schooling arrangements and medication. His parents, sophisticated people in a sophisticated city, did not even hear the word Asperger’s until he was 20, Ms. Tucci says in “Today’s Man.”

Still, she says, she knew within days of his birth that her son was different. He nursed oddly, she says, could not bond, had facial tics and later developed seizures.

“The doctor calls and says, ‘Mrs. Gottlieb, it’s the worst; it’s very bad,’” she recalls in the film. “He may never talk, he may never walk. He may become blind, deaf and dumb.”

None of the worst came to pass. Mr. Gottlieb’s parents watched as he began hitting developmental milestones. And when his sister was making the documentary (stopping for the birth of twins and a bout of now vanquished thyroid cancer), she even found an old film of Nicky saying his first word, bread, a piece of history relegated to a cupboard in her parents’ Manhattan home.

Lynda Geller, the clinical director of the Asperger Institute at the New York University Child Study Center, said that “Today’s Man” called much needed attention to the problems of adults with the syndrome. The institute treats children and adults with Asperger’s, and Dr. Geller said she received calls frequently from adults with the syndrome who have not yet received a diagnosis.

“We need a lot more creative solutions for independence,” she said. “To me, looking at the job world and independence later in life are critical.”

Asperger’s syndrome was added to the American Psychological Association’s diagnostic reference in 1994. And although the Centers for Disease Control estimate that there are 560,000 people under age 21 with autism in this country, there is no good data on adults.

A few weeks ago Tina Brown, another former editor in chief of The New Yorker, was host of a screening of “Today’s Man” in Midtown Manhattan. The audience included journalists and parents of people with Asperger’s. Ms. Brown introduced Lizzie Gottlieb and Nicky Gottlieb. Mr. Gottlieb said jokingly that he was bored from seeing the film over and over but was proud of his sister for making it.

Ms. Brown fielded questions from the audience members, who wanted to know what Mr. Gottlieb did for a living and if he was aware of his limitations. Ms. Brown asked Mr. Gottlieb if he declared his disability in social situations.

“Most of the people I meet have been warned about me,” he said in his tongue-in-cheek way, making the audience laugh.

Ms. Gottlieb ends her film with Mr. Gottlieb singing, off-key and unselfconsciously:

Poor wand’ring one

If such true love as mine

Can help thee find

True peace of mind

Why, take it, it is thine.

 source: NY Times article by Felicia R Lee on 1/8/08 www.nytimes.com  

tutoring in Columbus OH:   Adrienne Edwards   614-579-6021   or email  aedwardstutor@columbus.rr.com

+ Ohio College Works With Autistic Teens, Families

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Defiance College, near Toledo Ohio, has launched a program to educate teens with autism, support their families and provide “best-practice” education to undergraduate and graduate students.

Begun in 2007, the Hench Autism Studies Program (HASP) is addressing the need for “better and more integrated services for late adolescent with autism who are challenged by sensory issues, communication problems and interpersonal interactions,” a spokesperson says.  In addition, it will work to provide services for familites.

According to Catharine O’Connell, PhD, vice-president for academic affairs, there aren’t many resources for adolescents with autism. 

After initial meetings to discuss creating the program, Defiance discovered it had people in different disciplines who had worked in special education, MRDD and other related areas.

“When we all got together, we found we had a fair amount of expertise in the room,” O’Connell said.

The program was created through a collaboration between Defiance College, area school districts (chiefly the Northwest Ohio Educational Service Center), Bittersweet Farms of Whitehouse Ohio, and philanthropists Eric and Deb Hench, parents of a son with autism.

The multi-faceted program includes:

• A specialized on-campus, public high school classroom for late adolescents with autism.
• A resource and referral center for families of children and adults with autism.
• Specialized training for undergraduate students to have peer interaction with students with autism.
• Focused coursework for undergraduate social work majors and additional training for licenses social workers.
• A new licensure within the Master of Arts in Education Program for Intervention Specialist, Mild and Moderate K-12, with an emphasis in autism.

Eric Hench, a Defiance resident and a member of the college’s board of directors, and his wife, Deb, helped make this program happen.  He said that frustration about reaching the resources needed for his son, Jon, was the impetus in his mind. 

Resources for Jon, when he was younger, were minimal, said Mrs. Hench.  As he grew older, they were almost non-existent.

Most of the therapists Jon needed were not available locally, and the constant traveling was a “big-time investment.”

At present, Jon is living at Bittersweet Farms, making a smooth transition from living at home.

The college’s mission to provide service learning led the Henches to discuss creating an autism program there.  Hench would like the program to bring students who are pursuing teaching or other applicable career choices “up to speed” when working with students who have autism.  

Wendy Nashu, a special education supervisor for the Northwest Ohio Educational Service Center, said the new program’s public school classroom serves students 15 years old and up.  The on-campus classroom has two students at the moment, with room for several more.

She says the program is “a new approach in assisting students to transition into the larger community.”

Nashu works with a team of professionals, including an occupational therapist, speech therapist, adaptive physical education teacher, psychologist, classroom teacher and a paraprofessional classroom aide.

Defiance College has provided a safe environment to work in, and has proven to be a great opportunity for the students [with autism] to work with peer-aged students, said Nashu.

For instance, teachers and students in the HASP classroom have created a business, “Bumble Bean Coffee,” to sell coffee, beverages and baked goods on campus.  This project helps students with autism develop business and communication skills.

Freshman Alaina Hammond, is involved in the program’s peer mentoring group.  She and others who collaborate with the students who have autism  have begun to help them become better equipped at negotiating the “unspoken rules” of communication.

She and her classmates have also worked among the residents of Bittersweet Farms in order to gain experience.

Although autism manifests in many different ways, “often, they are just different in the way they speak and reason,” said Hammond.  “They think in pictures sometimes.”    

Defiance College (www.defiance.edu) is located in the town of Defiance, Ohio, an hour from the larger cities of Toledo and Lima.  Learn about Bittersweet Farms at www.bittersweetfarms.org.

sole source: article in the Toledo Free Press online, by Autumn Lee on 12/22/07; www.toledofreepress.com

tutoring in Columbus OH:   Adrienne Edwards   614-579-6021   or email  aedwardstutor@columbus.rr.com  

+ Teaching Autistic Children – Book

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A book by Bryna Siegel, “Helping Children With Autism Learn: Treatment Approaches for Parents and Professionals” wants to guide teachers, therapists and parents of children with autism spectrum disorders.  It is about how children with different forms of autism learn.

But it is also about how to teach these children — based on how they can best learn.   Siegel writes:

Autism is a ‘spectrum disorder’, meaning that it manifests itself differently in each child.  Like a row of dominoes, if an early aspect of development is affected in a particular case of autism, other later-emerging aspects of development will be affected too.

As a result, each case of autism presents a slightly different profile of learning abilities and learning disabilities.  Each learning ability and each learning disability may influence how a particular child with autism may or may not learn something the way other children without autism may learn the same thing.  These autism-specific learning barriers are referred to in this book as ‘autitic learning disabilities’.  The autism specific learning strengths are referred to as ‘autistic learning styles’.

A note on the page facing the introduction suggests “How to Read This Book”.  It notes that the work should be seen as a sourcebook; read it through, or read only the chapters that will help you most now.

The first part of the book introduces, Siegel says, a whole new way of thinking about autism.  New parents might want to skip this part and go straight to what specific area of development or specific kind of treatment program they need right now.

Each of the three parts, and each chapter, is “modularized” and organized to make sense even if read alone.  “While all aspects of autism are connected, focusing on just one dimension at a time can help unpack  the complexities of treating autism, and in a manageable way.”

The book is in three parts:

I.     “The Fundamentals of Autistic Learning Styles” with chapters on origins, atypical development, and the autistic’s possible compensatory strengths.

II.     “Autistic Learning Disabilities and Autistic Learning Styles: What Makes the World of the Autistic Child Different?”  Chapters discuss social and communicative challenges as well as treatments; relating to the ‘world of objects’; and daily living skills.

III.     “Methods of Teaching Children With Autism: How They Address Autistic Learning Disabilities and Autistic Learning Styles“,  has chapters on Applied Behavior Analysis and Discrete Trial Training; the TEACCH Curriculum; mainstreaming; model programs; and IEPs.

Finally there are suggestions for further readings for teachers, parents and professionals; an Autistic Learning Disabilities Inventory; and an index.

Eleven years ago, Siegel wrote “The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders”.  This later book brings her research work together with her clinical experience in the intervening years.  She illustrates aspects of intervention with principles and findings from that experience.  She believes that certain learning styles are adaptations that children with autism use in an attempt to compensate; an awareness of these styles is an essential starting point for intervention.

Since legitimate differences in approach exist, and these differences can add to the burden of parents as well as clinicians, this book provides a synthesis of clinical experience to help guide intervention.

“Helping Children With Autism Learn”, by Bryna Siegel PhD is published by Oxford University Press, 2003.  ISBN 978-0-19-53206-5 (paper).

tutoring in Columbus OH:   Adrienne Edwards   614-579-6021   or         aedwardstutor@columbus.rr.com  

+ “Born On A Blue Day” — Book by Asperger’s Savant

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Daniel Tammet opens his book:

I was born on January 31, 1979 — a Wednesday.  I know it was a Wednesday, because the date is blue in my mind and Wednesdays are always blue, like the number 9 or the sound of loud voices arguing.  I like my birth date, because of the way I’m able to visualize most of the numbers as smooth and round shapes, similar to pebbles on a beach.  That’s because they are prime numbers: 31, 19, 197, 79 and 1979 are all divisible only by themselves and 1.  I can recognize every prime up to 9,973 by their “pebble-like” quality.  It’s just the way my brain works.

Daniel Tammet has a rare condition known as savant syndrome, like Dustin Hoffman’s character in Rain Man.  He also experiences “synesthesia”, whereby  numbers, letters and words appear to him to be colored, each with distinctive shapes.  He has emotional responses to these shapes and colors: happy, bright, dark, angular, pleasant or unpleasant.  

This aesthetic dimension is unusual in a savant; perhaps occuring in only 1 of 10,000 people, says Dr Simon Baron-Cohen, the author of Mindblindness.   In Daniel’s case ”his synesthesia gives him a richly textured, multisensory form of memory, and his  autism gives him the narrow focus on number and syntactic patterns.”

In his late twenties now, and living a fruitful, independent life with a partner in his native Kent, in England, Daniel feels he has a mission in life: to serve as an inspiration for other persons by demonstrating that conditions such as autism or epilepsy — from which he has also suffered — don’t need to interfere with overall development.

His additional gift for languages has provided him with a livelihood: he runs a successful computer-based language tutorial company called Optimnem.  (Yes, that’s how it’s spelled.  There’s a reason: the Greek goddess Mnemosyne.)  He has taught himself ten languages, including Romanian, Finnish, Icelandic and Welsh.  He is currently participating in a research project learning sign language, to find out how his particular brain will negotiate that acquisition.

This gentle, modest book is written with openness and candor.  It is filled with stories about the bravery of his parents, his childhood epileptic seizures, his experiences growing up, his obsessive need for order and routine.  He makes us understand the comfort he finds in mathematics, when the world overwhelms him.  “Numbers are my friends,” he says.

He shares his hard-won insights into his own mental processes.  We go with him on far-flung journeys. as he participates in research projects, documentary production, lectures and demonstrations around the world.  He relates his meeting with Kim Peek, the extraordinary man who was the inspiration for the Rain Man story, and his guest appearance on the David Letterman show.

On one occasion, he determined to help raise funds for epilepsy research by promising to recite 22,514 digits of  pi, the mathematical number that extends into infinity.  He did, in five hours and nine minutes, and set the new British and European record.

One of the most common questions I was asked … was: Why learn a number like pi to so many decimal places?  The answer I gave then as I do now is that pi is for me an extremely beautiful and utterly unique thing.  Like  The Mona Lisa or a Mozart symphony, pi is its own reason for loving it.

“Born on a Blue Day” is published by the Free Press, an imprint of Simon and Schuster.  ISBN – 13: 978-1-4165-3507-2.  ($24)

tutoring in Columbus OH:   Adrienne Edwards   614-579-6021   or           aedwardstutor@columbus.rr.com