autism file magazine
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October/November IssueTRANSCRIPT
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Providing Hope and Help for Autism Families
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AUTISM FILE 1
POLLY TOMMEYEditor-in-Chief
Polly Tommey is one of the
world’s leading advocates for
children and families impacted
by autism spectrum disorders.
She has presented at the
European Parliament and
given voice to autism issues
before leaders of industry and
government. She is the founder
of both The Autism Channel, on
Europe’s Sky Television, and also
Autism File magazine, where she
serves as Editor-in-Chief. Her
book, Autism: A Practical Guide
to Improving
Your Child’s
Quality of Life
(co-authored
with Jonathan
Tommey) is
available via
Amazon.com.
POLLY’S PIECE
A Tale of Two TeensRecently completed filming documents the struggles families face in trying to get medical treatments for their children with autism…B Y P O L L Y T O M M E Y
The past months have kept me frantically busy with filming. Two years ago, we started filming two British families who were desperate to get medical help for their teenage boys. Jonathan Edwards was painfully thin and took hours
to eat a simple piece of chicken; his parents were told by the British doctors that Jonathan had a fear of swallowing food, a common issue for people who have autism.
On the other hand, Jack D. ate loads but his problems included horrific self-injurious episodes. He had a swollen head from constant banging—he would smash his head against anything and everything to the point of giving himself black eyes, and he made loud groaning noises rather like a cow in labor. Both sets of parents were at their wits’ end trying to find alternative answers for the constant trauma their boys were experiencing, all believing them both to be in agonizing pain. The British doctors had no idea what to do with either of them.
Eventually, Jonathan flew to New York and Jack to Bulgaria. (Jack was in such distress it took two attempts to even get him on the plane.) Both boys saw Dr. Arthur Krigsman, and both were diagnosed with very severe bowel disease. I’m not going to go into detail here as shortly their stories will be available for everyone to see.
It has been a long and difficult journey for both families—but our filming came to an end last week following two years of horrendous struggle to get the disease under control (it isn’t curable but with correct treatment can be managed). But the struggle didn’t end there. There is also the ongoing battle with British doctors to support treatment and accept the diagnosis, and also the families’ implementation of the strict protocol that must be followed by all in order to achieve positive results. It is beyond belief that both British families had to find the money to fly their sick children to America and Bulgaria to get a diagnosis for a disease that would have had you or me in an ambulance and seen straightaway here in the UK; we would have been treated and given the care we needed for such a serious illness.
Why then do we hear over and over again that people with autism aren’t being given the most basic medical attention? Why are people with autism handed over to psychiatrists who tell parents they are medically cleared and even if not, the mind must first be healed? Why are people with autism constantly being given totally inap-propriate psychotropic drugs? One of our recent filmings in the USA took us to a five year old girl on heavy medication for disorders and conditions she didn’t have; we are seeing more and more of this. It is abuse at the highest level and it is happening not just in the UK but also in America and around the world.
Our stories will be posted on www.autismmediachannel.com which is now also the new home of the Autism File. Please enjoy this magazine, as always packed with support, advice and practical strategies for dealing with the challenges autism places upon families. If you know a family who is struggling, please tell them about us; our videos and magazine are free—we just need an email address to get these invaluable resources in their hands.
Stay tuned as we’ll soon be announcing the opening of ticket sales for our Give Autism a Chance Summit in Austin, Texas next April. This will be a gathering like no other, with input from experts in the areas that matter most to families dealing with autism. We are proud to announce that Aiden Quinn and Rob Schneider will be there ready to answer any questions you may have for them. Every part of this event is interactive so everyone will have a chance to discuss the issues important to them. Tickets will be limited because of venue seating availability, but we will be live online for those who can’t make it to Austin.
“It is beyond belief that both British families had to find the money to fly
their sick children to America and Bulgaria to
get a diagnosis for a disease that would have had you or me in an ambulance and seen straightaway
here in the UK…”
2 FEATURED CONTRIBUTORS
Editor-in-Chief Polly Tommey [email protected]
Executive EditorRita Shreffler [email protected]
Art DirectorMary Francis McGavic [email protected]
Editorial AssistantMollie Shreffler [email protected]
AdvertisingDirector of Advertising and MarketingKimberly Linderman
Advertising Account ExecutiveAimee Allenback
Editorial Advisory BoardMary Holland, Esq.Mary Holland is managing director of the Elizabeth Birt Center for Autism Law and Advocacy, and a board member of the Coalition for Vaccine Safety.
Julie Matthews, CNCJulie Matthews is a Certified Nutrition Consultant specializing in autism, and author of Nourishing Hope for Autism and Cooking to Heal.
James A. MoodyJim Moody is a practicing attorney and Founder of Citizens for a Competitive Economy. He is very active in cause-related advocacy and has dedicated himself to serving the autism community for nearly two decades.
Shannon King Nash, Esq., CPAShannon is an attorney who has been featured as a tax, finance and legal expert in numerous publications. She is co-founder of Colored My Mind, an autism outreach nonprofit.
Stephen Shore, EdDStephen Shore is an assistant professor at the Ammon School of Education at Adelphi University, teaching special education with an emphasis on autism.
Chantal Sicile-KiraChantal Sicile-Kira is an award-winning author, speaker, and leader in the field of adolescence and the transition to adulthood. She is the past co-chair of the South Counties Autism Regional Taskforce of the California Senate Select Committee on Autism and Related Disorders.
Carol Stott Carol Stott is a Chartered Psychologist and epidemiologist specializing in the identification and assessment of children and adults with autism and related conditions, and the co-founder of BeginningwithA, (BWA), a diagnostic training and assessment consultancy based in Cambridge, UK.
Eric UramEric Uram is Executive Director at SafeMinds, a non-profit dedicated to helping our children by stopping the environmental exposures triggering the epidemic of autism and its related problems.
Anju Usman, MDAnju Usman specializes in biomedical interventions for children with ADD, autism and related disorders, and is co-founder of the Autism Center for Enlightenment, a non-profit which supports research, education and biomedical therapies for families in need.
Paul Whiteley, PhDPaul Whiteley has researched autism spectrum and related
blogspot.com) focuses on discussing various facets of autism and related research.
Andrew Wakefield, MB, BS, FRCS, FRCPathAndrew Wakefield is an academic gastroenterologist who has
invited scientific commentaries.
The content of the letters/articles and advertisements in Autism File reflect the views of the respective contributor/advertiser, and not those of the editor/publisher.
Christina Adams, MFA Christina Adams is the author of the popular memoir A Real Boy: A True Story of Autism, Early Intervention and Recovery (Berkley/Penguin). Her work has been on National Public Radio, and in The Washington Post, The Los Angeles Times, LA Times Magazine, CHILD magazine, and many others. She has been a featured and keynote speaker at conferences across the coun-
try, including prestigious places such as Hamilton Health Care Center (in NJ), Center for Autism and Related Disorders, National Early Jewish Childhood Educators, Autism Society of America and Autism One. She has met with the head of a Congressional subcommittee on investigating autism, and is an advocate for families.
Sophia CosmadopoulosSophia Cosmadopoulos is an artist with a degree in Art History from Oberlin College focusing on Studio Art. She has worked as an art consultant and teacher with special needs populations at Creativity Explored in San Francisco, and in New York at HAI, the Beacon Center for Arts and Leadership, as a volunteer for Pure Vision Arts, and before her current position at PVA, at AHRC as an
Art Consultant. Sophia also has a strong interest in textile design and has worked directly with designers in the clothing industry. She has worked collaboratively with other artists working in a variety of disciplines.
David KirbyDavid Kirby, a regular contributor to the Huffington Post since 2005 and TakePart since 2012, has been a professional journalist for nearly 30 years, and was a contracted writer for The New York Times. He has written for several national magazines and was a correspondent in Mexico and Central America from 1986-1990. He is also author of Evidence of Harm, a New York
Times bestseller, winner of the 2005 Investigative Reporters and Editors (IRE) award for best book, and finalist for the New York Public Library Helen Bernstein Award for Excellence in Journalism; Animal Factory, a highly acclaimed investigation into the environmental impact of factory farms; and Death at SeaWorld, Shamu and the Dark Side of Killer Whales in Captivity, which “tells the story like a thriller,” the Wall Street Journal said in a rave review. He is also an experienced writing and media coach. More information is at www.davidkirbycoaches.com and www.deathatseaworld.com.
Erik Nanstiel Erik Nanstiel is the parent of a 14-year-old daughter with severe autism. His professional background is in trade publications as an art director and writer. He co-founded the Foundation for Autism Information & Research, Inc. (www.AutismMedia.org), and is co-creator of Avatalker AAC, a speech-communication app for the Apple iPad. He occasionally
volunteers for Autism One at their annual conference as a videographer.
Pamala RogersPure Vision Arts studio and Expressive Art Program’s Dr. Pamala Rogers is an artist, an arts educator and a licensed psychoanalyst who is a foremost authority on supporting the creative process among people with neurodevel-opmental challenges. She oversees all aspects of the PVA program as well as a wide range of The Shield arts programs for children and adults.
Alix Strickland, BCaBAAlix Strickland is an applied behavior specialist and founder and director of the Le Chemin ABA VB Learning Center for children with autism and other special needs in Paris, France. She is known as the “Green Behavior Specialist” because she uses natural cleansers and organic foods at her center in addition to making a lot of her own DIY, up-cycled therapy materials. She
coaches families and professionals in using ABA and Verbal Behavior strategies in France and abroad. Her website is www.lecheminaba.com. You can follow her work on Facebook at https://www.facebook.com/lecheminaba.
OCTOBER-NOVEMBER 2013
in this issue…
f e a t u r e s A PURE VISION By Sophia Cosmadopoulos and Pamela Rogers . . . . . . . . . . 24 Creativity translates into learning life skills in NYC’s unique studio, Pure Vision Arts.
DO IT YOURSELF! By Alix Strickland . . . . . . . . . . . . . . . . . . . . . . 28 At-home autism therapies are eco-friendly and won’t bust your budget.
TIME FOR A CHANGE By Christina Adams . . . . . . . . . . . . . . . . . . . . 32 Know the out-of-home placement options—even if you believe you’ll never need them.
REPEATING HISTORY By David Kirby . . . . . . . . . . . . . . . . . . . . . . 38 Investigating Australia’s history of Pink Disease highlights its many similarities to autism.
d e p a r t m e n t s ALL WE CAN HANDLE By Kim Stagliano . . . . . . . . . . . . . . . . . . . . . . . 8
Gaining some perspective when it comes to art and autism.
LIVING WITH AUTISM By Maria Milik . . . . . . . . . . . . . . . . . . . . . . . . 10 Let your child guide the way in expanding limited areas of interest.
NUTRITION FRONT By Julie Matthews . . . . . . . . . . . . . . . . . . . . . . . . . 14 Autism and agression: can certain foods be triggers?
SENSORY SMARTS By Lindsey Biel . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Use these Top 10 Art-Smart Tips to help sensitive artists thrive.
GREEN HOME - HEALTHY KIDS By Deirdre Imus . . . . . . . . . . . 44 Practical strategies for going green on a budget.
NUTRITION SOLUTIONS By Paul Whiteley, Mark Earrnden
& Elouise Robinson . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46 From bench to kitchen: introducing the Autism Food Club.
r e g u l a r s POLLY’S PIECE . . . . . . . . . . . . . . . . . . . . .1
FEATURED CONTRIBUTORS . . . . . . . . .2
WAKEFIELD . . . . . . . . . . . . . . . . . . . . . . .12
GIVE AUTISM A CHANCE . . . . . . . . . . 19
THE WAY I SEE IT . . . . . . . . . . . . . . . . . . . 20
TIPS FROM THE TEAM . . . . . . . . . . . . . . 42
WALLIS: 1 IN 64 . . . . . . . . . . . . . . . . . . .51
RESEARCH ROUNDUP . . . . . . . . . . . . . . 52
QUESTIONS & ANSWERS . . . . . . . . . . . 54
SPECTRUM MUMMY . . . . . . . . . . . . . . . . 59
Autism therapies don’t have to be expensive to be effective.28
A guide for accessing residential options for your ASD child32
Mercury has long been known as a powerful toxin, causing harm to both past and present generations.38
Adults with autism find both social and vocational opportunities at Pure Vision Arts.24
ON THE COVER: Autism File contributor Maria Milik and her sons, Leo and Joey.
Photography by Esmeralda Kaiteris.
5
Mind’s EyeArt across the Spectrum
“ F I S H O N M Y H E A D ” A C R Y L I C B Y C H R I S T I A N E A R L Y
Christian Early’s first book as an illustrator is Can You See Me? A View of Our World by an Adult with
Autism by Mayra Ron (Tate Publishing, 2009). Painting for this twenty-nine-year-old adult with autism, however, did not come easily. Christian began his painting career at age seventeen with mere awkward lines, his poor fine-motor skills preventing him from excelling in this visual art. However, with the determination of his artistic mother and with the persistence of many teachers, Christian has succeed-ed in painting how he sees his world: funny and comical.
His early art included lions’ eyes that jumped out at you and eagles that looked deeply into your heart, and it has now evolved into cartoon-like characters that bring a smile to many faces: funny ladies with long arms or pointed fingers, portrayals of himself with his red-haired mother, cousins, and grandma alongside oth-er colorful and humorous creations. He reminds us that it is not the dis-ability that defines a man. What distinguishes a man from others is his courage to unleash his artistic expression no matter the diagnosis or label.
Christian resides in south Florida. He will be participating in an art ex-hibit curated by The Art of Autism at the Good Purpose Gallery in Lee, Massachusetts in February 2014. His art is part of the book The Art of Autism: Shift ing Perceptions by Debra Hosseini.
FIND OUT MORE
The Art of Autism
www.the-art-of-autism.com.
You can buy Christian Early art cards at
www.autcards.com
6 LETTERS TO THE EDITOR
Speak Your MindGoing Digital!I have to confess that I was disappointed when I read that the Autism File was no longer going to be in print as I always looked forward to receiving my copy in the mail, reading it, and then passing along to other parents. However, having seen the first digital issue, I’m excited about this new way of accessing the articles—and being able to forward the link to others lets me reach a lot more people who truly need the information. Nice job, Autism File!
—Sarah
The new magazine is awesome! I’d been hoping you would come up with a digital version of this incredible resource—I’m usually at my computer anyway and can just dip in and out of the pieces at my own speed. The fact that it’s free is such a nice bonus too!
—Elizabeth
Revolutionary RoadAs a big fan of the Thinking Moms’ Revolution—as well as the mother of a vaccine-injured 12-year-old girl—I was happy to see the interview Polly Tommey did with Lisa Goes. It really is an outrage that so many of our kids don’t get the medical attention they deserve and in fact are often all but ignored by most in mainstream medicine. Thanks for helping get the word out that autism is a medical condition and our kids are in critical need of treatments.
—Nancy
ReflectionsWhat happened to Alex Spourdalakis is heart-wrenching and painful to even think about. Thanks to Dr. Wakefield for writing about it in the last Autism File issue. I agree that this was a desperate family and while this type of killing is never justified, I fear we’re going to see more of these cases in the future if there’s not a huge change in the way society perceives autism. I don’t think most people realize that there’s a dire lack of medical treatments and services for this population.
—John
Navigating the SystemI love the new digital format! There were so many great articles in this issue and I especially appreciated the article on IEPs from Cathy Jameson. My son was diagnosed with autism two years ago and is now entering second grade at a
new school so I was even more stressed out than usual about starting the whole process all over again with a new teaching staff. After reading through Cathy’s piece, I felt I was ready to take it on—and it’s gone surprisingly well. Thanks so much, Cathy and Autism File!
—Shelley
Risk ManagementThank you so much for the incredible article by Dr. Usman on preventing autism in future generations. This couldn’t have come at a better time as my brother and his wife are trying to start a family and given the fact that both my children regressed into autism following vaccines, they really need this information. I’ve been trying to gently make some suggestions about ensuring a healthy pregnancy but this article really says it all for me. I sent them the link as soon as I read the piece and they’ve been very receptive to it.
—Karen
I only wish I’d had this article 22 years ago when my husband and I got married and began thinking about starting a family. We had our first child a year later, and during the pregnancy, I was very conscientious, doing everything my doctor told me to and reading all the “baby books” available. We just didn’t know back then what we know now about the potential for serious harm from vaccines and other toxins. Several of my friends are getting ready to become grandparents and I’m sharing this article with all of them.
—Faye
Must-have resourceWow! I didn’t think Autism File could top itself, but this issue was so full of amazing articles that you definitely did! Autism File is one of the best resources for families out there. I can’t get enough of the articles about the medical care (and lack of) in our community and the fight to change things. And whether it was an article on food, apps, medical, sensory, support, school, prevention…something hit home for everyone this month. Add to that amazing talents, inspiring people, passionate advocates, and it’s FREE? Autism File is, without question, THE BEST!
—Shannon
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Gluten-Free for Fall | Latest Research | Nutrition News
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NAVIGATING
THE SYSTEMGet the most from
your child’s IEP
Classroom
Tech: 101
How technology
is transforming
ASD education
Prevention
Strategies
Avoiding ASD triggers
Hope and Help for Autism Families
ststatt
we want to hear from you! Email your letters and photographs to us at the Autism File, rshreff [email protected] may be edited for length, clarity, and style. Your correspondence is important to us and we value your input; however we’re unable to publish or respond to every letter. All letters submitted become the property of the Autism File magazine.
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READ ALL ABOUT IT…
Autism and Spirituality: Psyche, Self and Spirit in People on the Autism Spectrum
The spiritual dimension of the lives of those affected by autism is often overlooked or thought to be non-existent. The author, teacher and lecturer Olga
Bogdashina, uses both research and real-life experiences to demonstrate the spiritual aspect of life on the spectrum for both verbal and non-verbal individuals. Providing a framework for understanding the nature of spiritual growth and sense of self, the book also points out practical strategies for families and caregivers in supporting the spiritual needs of people with autism.
Olga Bogdashina (Jessica Kingsley Publishers)
From Like to Love For Young People with Asperger’s Syndrome
One of the biggest challenges for people diagnosed with autism is the appropriate expression of affection, both verbally and phys-ically. This book
serves as a practical guide for par-ents to work through with their child to establish a better under-standing of different types of affection and how to appropriately express those feelings. Using a series of structured, simple activi-ties for families to complete at their own individual pace, the book not only assists the individual with autism, but leads the entire family to a better comprehension of the communication challenges their loved one faces.
Tony Attwood and Michelle Garnett (Jessica Kingsley Publishers)
How People with Autism Grieve, and How to Help: An Insider Handbook
The manner in which those diagnosed with autism handle the loss of a loved one is often quite dif-ferent than what society typically
expects, leading some to perceive a lack of empathy on the part of the individual with autism. This handbook offers practical strate-gies for understanding and supporting people on the spec-trum experiencing grief over the loss of loved ones, providing guidance on everything from how to break the news of a death to dealing with the loss of a pet.
Deborah Lipsky (Jessica Kingsley Publishing)
Send your tips on great reads and useful products to [email protected]
I’m in a Facebook group that’s for moms in my Fairfield, Connecti-cut town and has over 1800 mem-
bers. They’re an interesting group of women ranging in age from twenties to grandma age (whatever that means). Carefully vetted, there’s a list that cir-culates asking to confirm that Jane or Mary lives in town and isn’t trying to “sneak” into this exclusive group. If you’re pregnant, you might slide in but you’d better fork over an ultra-sound to prove you’re on your way to Mommy-hood.
As a veteran autism Mom—my oldest is 18 and my baby is 13—I read most of the posts on this list with a jaundiced eye. By jaundiced I mean, “Are you freaking kid-ding me?” If I were Mother Teresa, I would be kind and understand-ing with the spate of questions from women who seem never to have heard of Google. Here are some of my favor-ites, and I am not making these up for your enjoyment:
“Where can I get take out salad delivered to my house?”
“My three year old finally asked for a manicure! Where can I take her?”
“I just bought chicken. What should I do with it?”
“Need ideas of what to buy my five year old for Christmas. She already has everything.”
“What Chinese restaurants deliver?”
“I need a recipe for banana bread. Anyone?”
“We’re going to DC on vacation. Where should we stay?”
In the last issue of Autism File, I wrote about the old fashioned Coffee Klatch—women of my mom’s gener-ation sitting around the kitchen table kibitzing about daily life over coffee
and Sara Lee pecan coffee cake. I know that Facebook is our version of the Klatch and I love it. But hon-est to God, “Where can I get take out salad delivered?”
If I were a lesser woman, one who did not have to dash about town run-ning into fellow group members, I would have answered each question like this:
“Go to the darn Stop & Shop, make a salad at the salad bar, drive it home.”
“Any one of the 435 nail salons in our town.” (The only business that outstrips nail salons
here is banks; I suppose so you can get cash to tip your manicurist.)
“Cook it? Surely there’s a cookbook collecting dust SOMEWHERE in your house. Find the
oven manual first—it’s probably IN your oven still in its plastic wrap.”
“Get her an FAO Schwarz gold card and a prepaid divorce for thirty years from now. And
give my love to little Veruca, Mrs. Salt.” (Charlie and the Chocolate factory reference there.)
“Google.”
“Google.”
“GOOGLE!!!!!!”Honestly, these women vote! Well,
they complain about town issues and school funding, but I’m not sure they
actually go to the polls and vote. After all, what if there’s a sale on salads with a side of manicures that Tuesday?
KIM STAGLIANO...KIKIMM SSTTAGAGTTTT LLIAIANNO.....I’m Kim Stagliano, wife,
mom, writer, tired! My
husband and I have three
gorgeous girls—who have
autism. Kind of impossible,
considering autism affects
boys 4:1 over girls. Mark and I
have learned that impossible is often inescap-
able though. My book, All I Can Handle: I’m No
Mother Teresa, is a humorous look at a life that
has been anything but ordinary or easy—and
yet is full of laughter, joy and love. I promise, you
won’t need a Prozac to read it. I’m Managing
Editor of www.ageofautism.com, the nation’s
first daily web newspaper about the autism
epidemic. I also write for The Huffington Post and
the MSNBC TodayMom’s blog. I graduated from
Boston College with a certain autism dad named
Doug Flutie. My husband Mark and I live in CT
with Mia, Gianna and Bella.
Putting things into perspective when it comes to autism and creativity…B Y K I M S T A G L I A N O
Art from the Heart8 ALL WE CAN HANDLE
a, nd-from
heard favor-rr
ALL WE CAN HANDLE 9
NOW IN
PAPERBACK!
www.kimstagliano.com
There is one question that appears from time to time that never fails to make me snort out loud. “What do I do with my (insert trendy name of the day)’s artwork that comes home from
school?” The answers pour in about Pottery
Barn picture frames and shadow boxes, and acid
free paper and cedar-lined storage cartons all meant to protect the precious art until (trendy name) is an adult.
My answer? Toss it in the trash.....
Ah, but I am mom to three teenaged girls seriously affected by autism. I am as jaded as a Forest Green Crayola crayon.
Every Mother’s Day, camp day, and major holiday my girls come home
with art—it looks just like the art trendy name child brings home from preschool or Kindergarten. And it breaks my heart.
If I saved all of their art, I’d need a storage facility. Imagine that episode of Storage Wars. “You’ve successfully bid on 407 sheets of scribble, 32 crooked
ceramic cups, 123 coffee filter flowers, 97 Popsicle stick boxes, 63 handprint paintings, 19 Sharpie-signed T-shirts and 86 sun-catchers!”
As my kids are growing older, the reminders of their lot in life sting a little more, the pain lasts a wee bit longer. And a simple piece of paper can make me cry.
I rarely respond to questions on the FB list. I don’t live in their world. My kids don’t live in their kids’ world. But I’ve made a point of being a public figure and people know me in town. Every so often I’ll get a PM from a
member, “I have a question about my son’s health, his development,
his next ped appointment—can you help me?”
I always answer—“YES. I will help you,” in the hope that I can help them paint a different picture for their child. Trendy name or not.
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10 LIVING WITH AUTISM
I ’ll never forget the day that my son’s first grade teacher
told me I needed to get him to stop obsess-ing over things he en-joyed. She said the best thing I could do is take those things away from him so he would stop thinking about them. I couldn’t disagree with her more. I wondered if she would ask the par-ents of neuro-typical kids to also take away items of interest—foot-ball, cars, etc.—to gain compliance?
I truly believe that in your own home, your child has every right to pursue and enjoy the things that make him or her happy. For some, that thing may be sports or trains and for others it may be collecting DVDs from their favorite TV shows, or maybe there’s an interest in keys from different car manu-facturers. (This was my youngest child’s obsession for a few years.)
We often hear from professionals that many children with autism tend to obsess on topics of interest. In a school setting, that may not always be appro-priate. At home during the downtimes, however, I see nothing wrong with let-ting kids be involved with topics and items of special interest. That’s not to say
that you can’t help your child expand their repertoire of interests. A little guid-ance and coaching can go a long way towards teaching your child about some fundamental topics to bring him up to speed with his peers—who knows, he may even end up surpassing them in some areas!
EXPANDING THE OPTIONSIt’s not uncommon for a child on the spectrum to be interested in things like
the planets or dinosaurs but in fact, just like their typical peers, there are myriad and diverse potential topics of interest out there. So how do you help your child hone in on something that is more advanced and substantive? It may not be as hard as you think.
For instance, my own son was into the planets when he was just two years old. This was sparked from an episode of Blue’s Clues on the planets that he would watch over and over again. I took him to
The Sky’s the LimitFollow your child’s lead to transform
restricted interests into endless possibilities…B Y M A R I A M I L I K
ONE THING LEADS TO ANOTHER— With a little guidance, your child’s limited interests can quickly expand
in myriad directions.
MARIA S. MILIK...MAMARIRIAA S.S. MMIILIK… has two special boys, Leo, 10,
and Joey, seven. Passionate
about advocacy for autism since
Leo was a toddler, Maria has
read and researched extensively
about ASD and potential
treatments. Vowing that no
parent should have to go through this alone,
she has developed a national and international
network of parents, educators, therapists,
nutritionists, and doctors.
Just Give Him The Whale!
Two of the best books I have read on dealing with limited
interests and fixations are written by Patrick Schwarz and
Paula Kluth. Pedro’s Whale, and Just Give Him the Whale!: 15 Ways to Use Fascinations, Areas of Expertise, and Strengths to Support Students with Autism. www.paulakluth.
com/books-and-products/. Both of these books are aimed
to inspire educators to utilize the talents and “obsessions” of
children on the spectrum as tools for learning. My sugges-
tion is to read these books and then pass them on to your child’s teacher. I
only wish they were available back when my child was in first grade!
the library to look through simple board books on the topic. We also went to our city’s science museum and found CDs featuring songs about the planets.
He quickly mastered and outgrew these items and we moved on to the adult section in the library for books that contained more detailed informa-tion and higher quality outer space images. We would frequently get on the NASA website to see what was going on with our nation’s space mis-sions. We talked about what astro-nauts do, how they needed protective suits to go into space, what they ate in space, etc.
My son then became interested in the different environments on the various planets. This gave me an opportunity to teach him about the environment that we, as humans, need in which to sur-vive. By the time he was four years old, he had mastered more about the topic than I had ever learned throughout my years in school.
REFINING THE FOCUSRealizing the possibilities from all of our “space explorations,” I encouraged him to pick a planet and concentrate only on that for a while. I explained
to him how Earth had so much more going on than the other planets in our solar system because of its incredible number of life forms, and that’s the one he settled on.
At first, he learned about weather patterns, then, different terrains, ani-mals that lived anywhere from deserts to the wetlands, the continents and finally centered on the United States. I introduced the “state quarters” to him and he started a collection of those. His interest then expanded to the presidents (which he started to learn
because of his newfound interest in coins) and from that, he developed an interest in American history.
To this day, that same first-grader (now in the fifth grade) is still interested in anything related to space (although it isn’t an obsession anymore), but he is also well versed in American history and geography and continues to collect coins. Even though his current obsession is “MineCraft” (a video sandbox game which allows players to build construc-tions out of textured cubes in a 3-D world), he has incorporated his previous knowledge about all of the things he had learned in the past and has been able to create a virtual world that blows his typical peers away.
A LITTLE DETECTIVE WORKI’ve known quite a few children on the spectrum who seemingly don’t have anything that interests them. If you look closer, you’ll see that they do, indeed, have strong interests—but don’t have the tools to really delve into them.
If you have a child who seems to always be into touching anything elec-tronic, instead of trying to get him to stop touching these things, go to your local resale shop and purchase a bunch of old telephones, radios or even a TV. You can put these items in a box or area accessible to your child and let him know that he can take these items apart all he wants. Sit down with him, show him how there are tools to help put these items together, and that by using those same tools, the items can be taken apart. Show him what the inside of an elec-trical cord looks like, and explain that each of the wires serves a purpose.
If you’re getting no response from your child, move on to a different item until you see a spark of interest. If he’s not at a point where he can be left unat-tended for short periods of time with these items, there is a good chance you can find a video or tutorial on the topic online. Don’t forget to search for “kid-friendly” sites, especially if the topic is something that would normally not be something in which a young child would show interest.
Fostering interests on a budget
Like many parents who have children
on the spectrum, I struggled to find
something—anything—that my child
would take an interest in when he
was younger. I found much success in
buying toys and other items at garage
sales and resale shops, discovering
that I could buy a box full of things
for my son to explore for less than the
cost of one item in a toy store. I’d give
them to him one at a time and wait to
see which things piqued his curiosity.
After a few days, if he didn’t show an
interest, I would move that item into
storage and pull out something else
for him to explore.
It’s important not to overwhelm your
child with too many things at one time.
Be sure to rotate the things you allow
him or her to play with. This will cut
down on any sensory overload and help
your child focus on just that one thing.
Also, be sure to get down at your child’s
level and show him how to play ap-
propriately with the toy or item. Most
of our children need guidance at first.
Although it’s fine for them to explore
and be creative with toys, it’s important
to teach them the proper use of them
as well. In doing so, you will be teaching
them fundamental techniques that will
carry over to other parts of their lives.
The best part is that you’ll be building
trust and developing a great relationship
with your child which is critical for social
and emotional well-being.
LIVING WITH AUTISM 11
If you look closer,
you’ll see that they do,
indeed, have strong
interests—but don’t
have the tools to really
delve into them.
12 WAKEFIELD
Another day—another death. Ac-tually two to be precise: Mari-lyn Edge of Scottsdale, Arizona
attempts suicide by crashing her pro-pane-filled car after killing her “vac-cine damaged” autistic son and her daughter in a Costa Mesa hotel room.
Meanwhile, Zachery Lassiter launch-es a petition calling for Kalamazoo mother Kelli Stapleton to be charged with a federal hate crime following her failed attempt to take the life of her autis-tic daughter. Her own attempted suicide also failed.
Three days ago, I sat in Room 105 of Maybrook Courthouse, Illinois. Among the unhappy souls paraded before the judge were Agatha Skrodska and Dorothy Spourdalakis, charged with first-degree murder follow-ing the death of Alex Spourdalakis, a name that is now all too familiar within the autism community.
As I sat there, I thought of Oprah. Not because we were in Chicago or
because I was missing a morning chat show, but because racism is, rightly, a federal hate crime. Specifically, I was reflecting on Oprah’s acclaimed role as Sethe in the 1998 movie Beloved, based upon Toni Morrison’s award-winning book of the same name.
Sethe is a slave working on the “Sweet Home” plantation of a sinister psychopath known as Schoolteacher. There, she is raped by Schoolteacher’s nephews. When Sethe complains to Mrs. Garner, Schoolteacher’s sister-in-law, the latter confronts him with the young men’s crimes. In retalia-tion, Schoolteacher and his nephews beat Sethe. Heavily pregnant with her fourth child, Sethe plans to escape but while searching for her husband she is trapped in a barn by her nem-esis. Schoolteacher’s nephews hold her down, rape, and humiliate her while their uncle stands by, encouraging them and invoking the Lord’s justice upon Sethe.
Sethe runs away from Sweet Home and eventually reaches the home of her mother-in-law, Baby Sugg. However, Sethe’s initial happiness is short-lived when Schoolteacher comes to reclaim her and her children. In desperation, Sethe slits the throat of her older daughter and attempts to kill her other children. She later justifies her deci-sion without apology, claiming that her children would be better off dead than enslaved.
Sethe is haunted throughout the movie by a poltergeist named Beloved—the ghost of her murdered daughter. Nonetheless, Sethe remains free—haunted, unhappy, but free.
Haunted, miserable, and incarcer-ated, Marylin Edge, Kelli Stapleton, Dorothy Spourdalakis and Agatha Skrodska will share cells with their respective ghosts. And face calls for charges of hate crimes. For Dorothy Spourdalakis and Agatha Skrodska at least, the prosecution is demanding the harshest sentence allowed by the state of Illinois.
In Beloved, Morrison vividly de-scribes and Oprah portrays a hate crime. But the crime, the hate crime—the contempt for a young black slave woman, the casual acceptance of her repeated sexual and physical violation, her perceived status as nothing more than chattel—comes from her white master and his disgusting nephews. Worse still, it comes from the God–fearing American society of the day. Sethe’s desperate act, committed in the face of her family’s otherwise in-evitable return to slavery, is a decision taken by a mother who loves her chil-dren, one who determines that, in the face of chronic abuse and institution-alized hatred, they should not suffer her fate.
Meanwhile, reporter Rosemary Parker of Michigan’s MLive.com, covering the news in Kalamazoo, sug-gests that, “The question at the heart of an unhappy conversation in the autism community is ‘Does sympathy for one group constitute hurtfulness toward another?’”
Is this really the question? I don’t remember it ever being asked fol-lowing the release of Beloved. The movie brought more pressing issues to the forefront.
ANDREW WAKEFIELD, MB, BS...AANDNDRREEWW WWAAWWWW KE...is an academic gastroenterologist.
He received his medical degree
from St. Mary’s Hospital Medical
School (part of the University of
London) in 1981. He pursued a
career in gastrointestinal surgery
with a particular interest in
inflammatory bowel disease. He qualified as Fellow
of the Royal College of Surgeons in 1985 and was
awarded a Fellowship of the Royal College of
Pathologists in 2001. He has published over 140
original scientific articles, book chapters, and invited
scientific commentaries. In the pursuit of possible
links between childhood vaccines, intestinal
inflammation, and neurological injury in children,
Dr. Wakefield lost his job, his career, his Fellowships, and
his medical license. He is co-founder of the Autism
Media Channel, a TV and video production company
that seeks to bring awareness and hope to those
interested in childhood developmental disorders.
Sweet HomeReflections on misplaced perceptions of what constitutes a hate crime…B Y A N D R E W WA K E F I E L D
BIG
ST
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K
WAKEFIELD 13
continued...
Autism: A Game-ChangerA Great Documentary Can Change People’s Minds:Shooting for Nothing Less
The Autism Media Channel was started by a mother and a physician who are not prepared to remain silent about the iniquities and injustices faced by autism families. Film—unambiguous and universally accessible—is their chosen medium. During the shooting of an autism reality series addressing the failings of the healthcare system, we came into contact with young Alex Spourdalakis. For that system to change, his extraordinary story needs to be told.
Engraved into the short life and tragic death of Alex Spourdalakis is the history of autism—a systematic failure on almost every level: medicine, psychiatry, social services, the pharmaceutical industry, public health, health care insurance, and the media.
With unique and unprecedented footage that captures the prelude to a killing, we have teamed up with A-list professionals to put that story together as a documentary. Now we need you to help us tell the world.
On Indiegogo NOW — Go to http://www.indiegogo.com/projects/who-killed-alex-spourdalakis--2/x/4604965
While causes aren’t always clear, certain foods are emerging as frequent contributors to aggressive behaviors… B Y J U L I E M A T T H E W S
A ggression is a difficult—and sometimes devastat ing—symptom that can occur
in children for a variety of reasons, some known and some unknown. Some of these are nature and others are nurture.
It’s a difficult area to study and understand for many reasons, espe-cially for children and adults with autism who cannot speak. When aggression is present in an individ-ual, it affects the entire family, with parents citing it as one of the most stressful aspects of their day-to-day lives. Because of the safety risks—to the individual with the aggressive behaviors and those around him or her—it’s very important to gain an understanding of the causes so they can be effectively addressed.
Certainly, aggression can happen from the frustration or anger asso-ciated with a child being denied a food. For the purpose of this article
though, we will focus on foods that can trigger aggression from consumption.
GLUTEN, DAIRY AND FOOD ALLERGENSThere are many examples of gluten and dairy caus-ing aggression including published articles and case studies, and myriad online anecdotes.
There are likely a number of ways gluten and dairy can cause aggres-sion. While all of the mechanisms have not been identified yet, I have
some theories. If you are eating these foods and creating opiates, opiates themselves can cause mood changes. Additionally, opiates peak and drop; “withdrawals” from these opiate-compounds can cause irritability and aggression. Also, pain from these foods could cause aggression.
Other food allergens can also cause aggression, so there are likely other ways aggression is triggered from food. Doris Rapp, M.D., ex-plains in her book, Is This Your Child, how aggression can be a symptom of food allergy and describes a variety of child case studies where a food allergen (specific to that individual) caused aggressive behavior. It could be wheat, dairy, corn, soy, oranges, or other foods. In these cases, they are associated with allergy or intolerance in the individual.
A gluten-free and casein-free (dairy-free) diet is often a great place to start with dietary changes, as
JULIE MATTHEWS...JUJULLIIEE MMAATTTTHEHEWWS…is a Certified Nutrition
Consultant, who has been spe-
cializing in autism and related
disorders for 10 years. She is
an expert in applying nutrition
and diet to improve health and
aid systemic healing in children.
Julie is the author of the award-winning books
Nourishing Hope for Autism and Cooking To Heal,
and is a frequent autism conference presenter. Visit
Julie’s website at www.nourishinghope.com.
14 NUTRITION FRONT
Autism andAggression
S. B
rasw
ell
Potential causes of aggression:
An imbalance of neurotransmitters
or hormones.
Pain (often gastrointestinal).
Parents and physicians report that
for some children, when serious GI
disorders are addressed, aggression
has been known to disappear.
Low blood sugar. This can create
feelings of anxiety and a sense of
urgency.
Certain nutrient deficiencies.
Food reactions.
SB
SB
llll
there are so many ways these foods can negatively affect children.
PHENOLS AND SALICYLATES In my one-on-one nutrition practice I’ve found phenols, salicylates and amines are the foods that are, in my experience, by far the greatest causes of aggression.
Artificial additives (most are “phenols”) are compounds that can trigger irritability, sleeping prob-lems, hyperactivity and aggression. Food additives are a well-known cause of aggression—Dr. Ben Fein-gold and others have been studying
this and publishing papers for de-cades. Dr. Feingold stated in his pa-per “Dietary Management of Juvenile Delinquency” that he had 60-70% success with an additive-free diet “for control of behavior.”
In addition to “artificial phenols” there are “natural phenols” in the form called salicylates. Salicylates have a phenolic structure, or aromatic chemical ring, that occurs naturally in fruits, vegetables, nuts, herbs and spices, and other plant foods. These foods are rich in wonderful nutrients, but if your child has trouble “detoxi-fying” the salicylates, they can be a
big problem, causing signifi-cant aggression, hyperactivity, and many other symptoms.
O ne o f my c l i en t s , a 10-year-old boy, had daily aggression toward his family and therapists. It would hap-pen dozens of times per day, seemingly out of the blue. People were getting hurt and it was a scary situation for ev-eryone involved. I suspected salicylates as the culprit, and after a dietary trial remov-ing them, his aggression vir-tually disappeared—it went
NUTRITION FRONT 15
When aggression is
present in an individual,
it affects the entire
family, with parents
citing it as one of the
most stressful aspects of
their day-to-day lives.
SALICYLATE FOODS
Grapes
Apples
Strawberries
Blueberries
Raspberries
Melons
Tomatoes
Oranges
Honey
Almonds
Herbs and Spices: Cinnamon, cumin, turmeric,
rosemary and more
16 NUTRITION FRONT
from 50 times per day to one time a month (and likely that was an ac-cidental exposure)!
AMINES AND GLUTAMATESAmines are a different natural food chemical that are processed by the same detoxification pathway, and therefore, often create similar reac-tions. People with salicylate sensi-tivity are more likely to have amine or glutamate intolerance. Amines and glutamates are found in fer-mented foods including sauerkraut and yogurt, salami, smoked meats and fish, bacon, canned fish, and broths. Some t imes I f ind it i s amines, not salicylates, that are the main culprits.
Glutamate also comes in the ad-ditive form of MSG (monosodium glutamate). One client I worked with was a teenager; he was very aggres-sive and only wanted to eat certain things. When I looked to see what
they all had it common, it was MSG as an ingredient. For him, remov-ing both MSG and a food sensitivity made a huge improvement and his aggression diminished dramatically.
For children with aggression, I always explore the possible role of salicylates, amines, and glutamates for causing or contributing to the re-action, as I have seen many times in my practice that removing these foods
reduces aggression for those who don’t tolerate them.
Aggression can have so many var-ious causes, and food is not the cause for everyone. However, what is clear is that if foods are triggering aggression for a child, removal of those foods can make a world of difference in decreasing aggression, and huge im-provements in the quality of every-one’s life can occur.
FURTHER RESOURCESFor a more in-depth discussion, a list of common reactions and symp-toms, foods containing salicylates, amines, and glutamates, as well as supplement support see my book, Nourishing Hope for Autism. If you sus-pect salicylates and phenols, below are some additional resources to get you started:
www.Feingold.orgwww.FedUp.com.auwww.Allergy.net.au
Product SpotlightIpiit, The Food Ambassador, is a smart-phone
app that helps you guide food choices based on your individual parameters. It
lets you set up choices including: no MSG, no GMO, no high fructose corn syrup,
and it even has gluten-free and dairy-free choices. When you scan a product at
the store, the app tells you if the packaged food meets your food parameters, and
if not, why not.
It’s a great GF/CF app, that sorts through the label and let’s you know if there are any
ingredients and food additives you are trying to avoid. When you are tired or forgot
your glasses, it’s easy to make mistakes when reading a label. Ipiit makes it easy.
It includes gluten-free, wheat-free, milk protein-free and egg-free, but it does
not include soy-free or peanut-free at this time (although it may in the future).
It’s great if you’re looking for an app that includes GF/CF as well as GMO-free and
food additive-free choices. And it’s simple to use: point your phone at the label
and the app does the rest.
BIG
ST
OC
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BIG
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From the BookshelfPeople often ask me my favorite books, particularly on the nutri-
tion and autism/ADHD subject. I have hundreds of books that overflow
three bookshelves in my office, most of which I’ve read cover to cover. I decided to
start a blog series on my NourishingHope.com website called “From the Bookshelf” and
thought it could be fun to share my first of the series with the Autism File.
Practical Paleo by Diane Sanfilippo. I highly recommend it. The book is beautiful,
very informative, and packed with hundreds of recipes. All of the pages are full color,
with photos for all recipes, and tons of beautiful nutrition and food charts. Also, it’s
Paleo so it’s naturally gluten-free, dairy-free, and grain-free and provides many recipe
choices for families on GF/CF, SCD, GAPS, or Paleo diets.
Even when you don’t need a full grain-free diet, most of us can benefit by getting
more vegetables and less grains. Normally, so many snacks and recipes center
around refined carbohydrates: breads, sandwiches, muffins, etc. Paleo recipes are a
great way to get inspired to make healthy and tasty snacks and meals.
Practical Paleo includes great nutrition information on digestion, leaky gut, and blood sugar
regulation, and explains how dietary choices can help. There are 30-day meal plans and so much more.
Get this book—you won’t regret it!
NUTRITION FRONT 17
covering content that matters, in every issue
Each edition of Autism File covers a diverse range of issues critical to ASD families:
Nutrition Education Therapy, behavior & life skills Biomedical treatments and interventions Research Try It—Taste It—Worth Reading Day-to-day assistance and support
Reach a highly targeted and receptive audience, who are deeply engaged with the content because it covers issues that uniquely matter to them.
Contact Kim Linderman, Advertising Director
or Aimee Allenback, Account Executive‘‘‘‘“I love Autism File and always recommend it to
friends and fellow support group members. It truly
is a springboard for recovery. I love that!”
Sylvia, Granite Bay, CA
Hope and Help for Autism Families
Garden Fresh Recipes | Latest Research | Nutrition News
Hope an
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J U N E - J U LY 2 0 13I S S U E 5 0
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Summertime Smarts Family Fun That Won’t Bust Your Budget
11
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Autism File, a bi-monthly publication, is now available as a FREE digital download when you click here to sign up!
d
sugar
18 SENSORY SMARTS
W hether kids, teens or adults on the autism spectrum are serious artists or sim-
ply having fun with crafts, it’s essential to address any sensory challenges. Here are some ideas:
1. Create a workspace conducive
to focus and creativity. Provide a comfortable chair and tabletop easel or slant board to reduce neck strain. If the person needs to move in order to remain attentive, consider an inflatable seat cushion such as the Movin’ Sit or Disc o’ Sit, a ball chair, or Hokki stool. Some people prefer to work standing up. In this case, set up a freestanding easel, raise the height of the work surface, or consider a stand-up desk.
2. Remove visual clutter to avoid
distractions, using opaque storage
bins for art supplies, toys, and
so on. Turn off glaring overhead lights and use a task lamp or floor lamp at eye level with a full-spectrum or incandescent bulb. If fluorescents (which many people can see and hear flicker) are unavoidable, add a light diffuser such as Classroom Light Filters.
3. Provide a soft, oversized shirt or cotton chef’s apron instead of a plastic smock which may be distressing because of the fabric texture or scratchy neck closures.
4. Play music or use a white noise
machine or CD if that helps with
focus. If it’s a noisy room and the person needs quiet, provide noise-reducing headphones or ear plugs.
5. If the person dislikes getting
messy, have a damp cloth nearby
for wiping hands, eliminating the
need to get up and wash hands
frequently. Once people find pleasure in what they’re doing, they’re usually more willing to deal with the sensory aspects. Provide alternates to enable participation. You can certainly provide gloves and a long-handled paintbrush or glue sticks instead of liquid glue.
6. Art media such as paint, markers,
glue, and clay usually have a
strong smell, so make sure you
have good ventilation. Generally, you should open a window or use a fan. Avoid invalidating a sensitive person by saying, “It doesn’t smell.” It does. Everything (and everyone) smells like something.
7. Even if the label says the item is
nontoxic, it may still be toxic to
that person’s nervous system. If the student cannot tolerate the smell of regular markers or tempera paint, try alternatives such as Mr. Sketch scented markers or liquid watercolor paint. Colored pencils and crayons may be best tolerated.
8. If a student refuses to touch
play dough or regular clay, try unscented gluten-free Wonder Dough; scented, gluten-free Aroma Dough; Eco-Dough for chemically sensitive kids; or low-residue Crayola Model Magic. Older kids might enjoy using Sculpey which hardens when baked to make beads and other objects.
9. Consider how much structure the
person needs. Does he become
anxious and disorganized when given art supplies and encouraged to explore freely? If so, you may want to use a kit with step-by-step instructions and a picture of the finished product. Kits such as Alex’s Color By Markers and My Clay Art, Paint by Numbers from Faber-Castell, Royal & Langnickel and others plus foam craft kits from your local crafts store are just a few of the pre-packaged activities that can be explored. Sequenced drawing can help a person to stay organized and get a satisfying result. Books such as Usbornes’s I Can Draw Animals and Ed Emberley’s books such as Draw A World can help.
10. Engage in sensory-rich activities
that set the person up for success.
A person may benefit from a preparatory hand massage; waking up fingers, wrists, and arms by using squeeze balls and hand exercisers such as the Eggsercizer or Pediatools monkey. It may also help to engage in movement and body awareness activities such as jumping jacks, bouncing on a ball, doing wall push-ups, chewing gum (Glee Gum is gluten-free), drinking thick liquids through a straw, or whatever sensory strategies work for that person at other times.
For more sensory strategies, please read Raising a Sensory Smart Child and visit www.sensorysmarts.com.
LINDSEY BIEL, M.A., OTR/L...LILINDNDSESEYY BBIIYY EL,...a pediatric occupational therapist based in Manhattan, where she evaluates
and treats children, adolescents, and young adults with sensory processing
issues, developmental delays, autism, and other developmental challenges.
Lindsey is coauthor of Raising a Sensory Smart Child, with a foreword by Temple
Grandin, and author of Sensory Processing Challenges: Effective Clinical Work with
Kids and Teens. She is also co-creator of the Sensory Processing Master Class DVD
program. She is a popular speaker, teaching workshops to parents, therapists,
doctors, and others on practical solutions for developmental challenges and sensory strategies
at home, school, and in the community.
Sensory Smart Art10 Ways to Help Artists Handle Sensory Issues…
B Y L I N D S E Y B I E L , O T R / L
FIND OUT MOREStand-up desk www.Worthingtondirect.com
Classroom light filters
www.Educationalinsights.com
Inflatable seat cushions, ball chair, Hokki stool
www.Achievement-products.com
Online Sculpey projects www.Sculpey.com
Monkey hand exerciser and other hands
strengtheners www.Pediatools.com
You can find most other items mentioned on Amazon
and many on the sensorysmarts.com web site.
Meet Edward TuckerCreative young man with autism gains work experience in a caring environment...
Twenty-seven-year-old Edward Tucker works at Polly’s Place, The Autism Trust’s flagship so-
cial enterprise shop and center in As-cot, UK. His chipper attitude brightens the atmosphere and his photography
skills are an ab-solute asset to the online store.
“I take photos of new products going on to the Po l l y ’s P l a c e websi te ,” sa id Edward. He uses creative angles and works with natural sunlight to capture some incredible images that show Polly’s Place prod-ucts in the best possible way. His
pictures are instrumental to the online store and help generate interest and sales from all over the world.
With a huge interest in trains, he’s also started collecting and displaying the pictures he takes from the bridge down the street from the shop. He’s memorized the train schedules and uses the bridge as a vantage point to collect images of the trains that pass by below. Recently, he’s started a dis-
play of his best pictures to share with the many other train enthusiasts who frequent The Autism Trust.
“We just love having him around. He’s part of the Polly’s Place team and like family to us,” said Mo Wilson, the manager of Polly’s Place.
The most important thing to Edward is that The Autism Trust and Polly’s Place provide him with a job that he enjoys in a supportive and caring environment.
Visit the online store to see Edward’s photographs www.theautismtrust.com.
GIVE AUTISM A CHANCE 19
PICTURE PERFECT—Skills with lighting and
angles allow Edward to provide the best pos-
sible showcasing of products.
PART OF THE TEAM—Edward’s attention to detail and sunny disposi-
tion make him an integral member of the Polly’s Place team.
“We just love having
him around. He’s part
of the Polly’s Place team
and like family to us...”
One person’s noise is another’s music…
B Y S A M R U B I N
W hen I go up and down in an elevator, I can distin-guish the note (pitch) the
motor hums in. Bulldozers, fans, leaf blowers—you name it. Everything is vibrating at various pitch frequen-cies. And the world is a symphony of sound, if you can allow machines to sing to you.
Of course, when I’m up close to a really loud or sudden sound, my
adrenaline goes off. But I think that this happens to anyone.
I have “perfect pitch” which is a ge-netic ability for being able to instantly identify pitch; and it has the added ben-efit of pitch memory which means that when I hear a piece of music, my mind instantly tape records it and I can repli-cate it at will. For this, I have been hired as the “harmonies captain” for various theatre productions.
The downside of this ability is that once the music is in my mental database, my eyes shut off, making it difficult to sustain reading music. It’s not that I don’t have the ability to decode musical notes or notation. I do. But I simply stop looking at it because of the dominance of my au-ditory system.
I’ve noticed that when I read, it’s easier if I hear the words. I prefer to either read out loud to myself or follow along with my eyes with an audio book or a computer-generated voice reading the words. Some people would characterize this as a crutch, but I think it’s better to know your strengths and weaknesses and work with them.
The composer, John Cage, capi-talized on everyday sounds to make his compositions. For one concert in particular, he piped the traffic from outside the symphony hall into it, exposing the audience to sounds they would normally tune out as “not music.” About traffic, he said, “If you listen to Beethoven or Mozart, they are always the same. But, traffic is always different.”
The way I see it, we live within a symphonic fishbowl of mechanistic auditory vibrations that actually have musical pitch—if only you tune your ears to hear the music of it.
20 THE WAY I SEE IT
SAM ETHAN RUBIN...SASAMM EETHTHANAN RURUBI…is a 20-year-old actor,
filmmaker, writer and
vocalist. He is the author
of And...Action! My TAKE on
Autism (and Life), available
on Kindle, and plays the
character Rocket in “The
Rocket Family Chronicles” (The Autism Channel).
His new book, Heretic, is due out this Spring and
he is in pre-production on a new film. He lives
with his family in Oakland, California.
The Autism Media Channel was
created to provide help and support
to individuals with autism and their
families. We work with professionals
from around the globe to present
practical strategies for all the chal-
lenges autism families face on a
daily basis. From designing a sup-
plement protocol to toilet training,
and from creating viable work-
places for adults with autism
to finding support for siblings,
we gather the best possible
input from physicians, thera-
pists, nutritionists and more to
present on our website.
Visit us at www.autismmediachannel.com
for more information
ED
RU
BINWired Up For Sound
THERAPY, BEHAVIOR, AND LIFE SKILLS 21
How often do you hear the words, “I already washed my hands!” or “I don’t want to
take a shower!” Many families who have a child, adolescent, or young adult on the autism spectrum often find themselves frustrated when it comes to cleanliness issues. Whether you are trying to get your child to wash his hands, change h i s c lo t he s , or merely wipe his face, hygiene is an impor t ant part of every-b o dy ’s d a i l y routine.
H y g i e n e challenges tend to become more dif-ficult as your child gets older as do the consequences for him not being clean. It can be exhausting arguing with your child day in and day out. Perhaps you have given up on enforcing a daily shower; after all, getting your child to wear deodorant, change his shirt, and put
on clean socks is just a battle not worth fighting every day. Or is it?
Let’s face it, you have gotten used to picking your battles; otherwise you would never get out the door.
What if there was a better way? What if you could get your child or adolescent to not only take care of his body, but also to understand why hy-giene is so important?
Below are some tried-and-proven tips that focus on helping your child
take care of his body without him—or you—melting down.
Remember: A little
patience goes a long
way. I know that some days your cup is overflowing with patience and on o t he r s you are at your wits’
end; this is totally understandable. On those days when you
are ready to crawl r ight back into bed,
I encourage you to try this: close your eyes, take deep
breaths, and count to ten. Once you reach ten, count backwards down to one. Try this at least three times. I like to envision the dots on a domino as I am counting. Having a focal point really helps me relax. After you count back and forth three times, say to yourself (or aloud), I can do this. Focus on the baby steps. Each step you and your child take is one step closer to the end result…teaching your child the importance of being clean.
Now that you are nice and calm, remember that your child learns by repetition. You may have to practice the following strategies a minimum
Bath Time Blues?
Top 10 Ways to Teach Meltdown-Free Hygiene…B Y J E N N I F E R L I N G L E
JENNIFER LINGLE, M.ED. ...JJEENNNNIFIFEERR LILINGNGLE…is the founder and president of the International Autism Association for
Families and Educators. She has been a special education teacher since 1999 and
the founder and director of Autism Consulting and Training, Inc. since 2006.
Jennifer was instrumental in developing in-home educational programs for
children affected by autism throughout the United States and continues to
provide intensive parent support and training to families. She holds her Master’s
Degree in Special Education and her Autism Endorsement. Jennifer is a sought
after speaker and travels internationally to set up classrooms to meet the diverse needs of her
clients. In addition, she creates multi-sensory environments in schools and summer camps
throughout the United States to assist children with sensory challenges. Jennifer is dedicated to
improving the quality of life for families and educators.
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22 THERAPY, BEHAVIOR, AND LIFE SKILLS
of 21 times before the techniques be-come habitual.
Use picture stories to explain why
cleanliness is important. As you may know, children on the autism spectrum are typically visual learners; they usually learn by seeing and not necessarily by hearing. Children with autism sometimes experience a breakdown in understanding the importance of cleanliness. They do not automatically understand that if they don’t shower, germs may make them sick, and when they smell bad, it is difficult to make friends. Because these outcomes may not matter to them, it is important to teach them the importance of good hygiene, and to care about being clean.
You can explain the importance of hygiene to your child by using a picture story. Describe how oth-ers feel and what others may think when someone does not take a bath or shower. Be clear about how other kids may not want to hang out with him if he smells bad. This thought process may not come naturally to your child, so using something mo-tivating, like your child’s desire to have friends, if he cares about this, may encourage him to take a bath or shower.
You can use picture stories to ex-plain to your child things like: what draws people to one another, why does he need to be clean, what does hygiene mean, how can hygiene help him make friends, what does hygiene have to do with getting a job, etc. Create stories using actual photo-graphs to explain complex subjects. Use the real names of body parts so as not to confuse your child. Try to be firm, literal, and to the point when explaining the importance of good hygiene to your child.
Video modeling is a great way to
assist your child with complex steps.
Recording actions on camera and playing them back for your child can assist him in conceptualizing your requests. You can role-play in the video or try guiding your child
step-by-step through a task while recording it. When your child watches the video, he can better understand, visually, what it is that he needs to do. Video modeling is great for teaching self-help skills such as brushing teeth, gett ing dressed, cleaning hands, wiping the mouth, cleaning food properly, washing clothes, and wearing deodorant.
Visual Task Strips are wonderful
tools for helping to visually break
down tasks into individual steps. For example, rather than putting up a sign next to the toilet that says, don’t forget to wipe, try placing specific visual directions of how to do so. A visual for wiping may include: pull off 6 pieces of toilet paper, fold the paper in half, wipe your bottom from front to back, if paper is clean pull up pants and flush the toilet, if paper is dirty then pull off 6 pieces of toilet paper and start again. These steps may seem obvious to you, but to a child who is a visual learner, he may need constant reminders to stay on task.
Task strips are great for breaking down the steps involved in a bath or shower too. Include turning on the water, wetting the whole body, put-ting soap on a washcloth or sponge, etc. If your child tends to forget to
wash certain parts of his body, you can include this in the task strip also. Write down every part of the body that you want him to wash. Laminate the task strip and hang it in the shower.
Make hygiene part of your child’s
daily routine. Taking a bath, taking a shower, brushing teeth, putting on clean clothes, wiping, and washing hands are not choices, but musts. Just like going to bed and eating are not opt iona l but essent ia l , good hygiene should be a part of your child’s schedule every day. If your child uses a visual schedule, start placing hygiene items in his routine throughout the day (if he doesn’t use a schedule, now is a great time to start). Children on the autism spectrum thrive on structure, routine, and repetition; set your child up for success by respecting these learning styles.
Respect your child’s sensory needs.
I have yet to meet a child on the autism spectrum who does not have challenges with sensory overwhelm or underwhelm. It’s essential to recognize that the reason your child may have difficulties getting his head wet or brushing his teeth may be because he is so sensitive to water (or
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THERAPY, BEHAVIOR, AND LIFE SKILLS 23
FIND OUT MORE
For more strategies on how to improve
the quality of life for your child on
the autism spectrum, please go to
www.AutismConsultingandTraining.com
anything for that matter) touching his head and hands.
Even changing his clothes may be overwhelming because of sensory integration challenges. He may be most comfortable in a certain shirt because he has broken it in and it is soft and comfy. He may not like the smell of the fabric softener or deter-gent you use, and this may deter him from wanting to wear new clothes.
Showering may be challenging because perhaps the shampoo or soap has a strong scent. Do you have air freshener in your bathroom at home? This, too, can cause some hardships in the bathroom.
Play detective, respect your child’s sensory needs, and make accom-modations when necessary. If your child seems to be in pain when he is brushing his teeth or hair, be sure to speak with an Occupational Thera-pist about ways she can help you through this process.
Use music to promote a positive
experience. Play your child’s favorite music in the shower, while getting dressed, or even when he is using the bathroom. Try pairing a stressful task with something that your child enjoys; this will help him make new associations and can also distract him from the stressful par ts of activities.
You can also try playing your child’s favorite video during a hy-giene task to help distract him. For example, while he is brushing his teeth, play a two-minute video. When the video is complete, he can stop brushing his teeth.
Also, try creating a CD that he can listen to while in the bathroom for the length of his bath or shower. When the CD is finished, it is time to get out.
Use a timer for transitions and
to prolong hygiene tasks. Because children on the autism spectrum tend to have challenges with executive functioning skills, your child may have a poor concept of time. He may
feel as if one minute is 20 minutes or vice versa.
To assist your child with under-standing that he doesn’t need (nor is he allowed) to be in the shower for two hours at a time, use a timer to assist him. Timers are great tools to assist your child in transitioning from one task to another task and to help him gain a better awareness of time.
Use reinforcers to promote positive
behavior. Place a picture of a motivator or reward after a hygiene symbol in your child’s daily schedule. Reward appropriate behavior with a desired activity or item. By providing your child with positive feedback, you are increasing the chances that the desired behavior will occur again.
Try using a chart with stars or stickers. Clearly define the require-ments for receiving a star or sticker.
For example, if your child needs to wash his body with soap, write, “Wash your whole body with soap to earn 1 sticker.” Make an agreement with your child that if he gets seven stickers he will earn a reward. Be sure to use a very exciting reward as his motivator.
Make it fun! Like most people in life, your child wants to have fun. Whenever possible, take the stress out of hygiene by being creative. Try to turn challenging times into fun games. Sing songs, get silly, smile, laugh, dance, and embrace your inner child to encourage a positive experience for both you and your child.
The perfect placeto get together.
From relaxing hammocks to 14 places to eat and drink and a dedicated activities center for kids, TradeWinds has all you need for the perfect beach getaway.
All rooms are non-smoking with refrigerator and microwaveNewly remodeled rooms and suites at Island Grand and Guy Harvey OutpostDesignated as an Autism-Friendly businessHost hotel for National Autism Association’s Annual Conference
JustLetGo.com/autismfriendly | 800.808.9834 | Florida’s West Coast
24 NAA CONFERENCE
A unique art studio in New York City provides vocational and social opportunities for adults with autism…
B Y P A M R O G E R S A N D S O P H I A C O S M A D O P O L O U S
Autism is among the most pervasive and fastest-grow-ing developmental disabilities of our time. As children on the spectrum age out of school and become adults,
they require specialized programs that allow them to focus on their own specific interests and talents. While much of the funding for autism tackles early intervention for children and general research, there is a lack of specific funding for these adults. The Shield Institute, a non-profit organization providing services for people with developmental disabili-ties, recognized the urgent need for age appropriate and in-novative programs in New York City. In 2002, under the guidance of Executive Director Dr. Susan Provenzano, Pure Vision Arts was created.
FILLING A VOIDPure Vision Arts (PVA) is Manhattan’s first and only art studio and gallery space for adults with autism and other developmental disabilities. The model is based on
Oakland, California’s “Creative Growth” program which opened in 1974 as the nation’s first independent visual art center for people with neurodevelopmental condi-tions. The creation of PVA in New York City quickly
24 NAA CA ONFERENCE
A Pure Vision
THE SMILE SAYS IT ALL—Oscar Azmitia painting in the art studio.
ART AND CREATIVITY 25
filled a void for self-taught artists who, historically, had limited access to mainstream arts institutions. Focusing on ability rather than disability, PVA strives to build public awareness of its artists’ important creative contri-butions. The small and committed staff provides studio space, high quality art materials, support, guidance and opportunities for exhibiting and selling the artists’ work. The Director, Dr. Pamala Rogers, explains, “PVA’s philosophy begins with the belief that the arts are not a luxury, but a necessity in a civilized society, and that all people regardless of their ability should have the opportunity to express themselves.”
Located in the heart of New York City’s Chelsea gallery district, PVA is a comfortable 2,000 square foot sunny loft space. Large-scale cardboard traffic lights and parking meters line the floors, art hangs floor-to-ceiling and rows of handmade paper vehicles cover each win-dowsill. Carts of acrylic paint, pastels, colored pencils, paper and canvasses are located in the center of the room. On any given day, up to twenty-five artists are
intently making art, having discussions and laughing with their peers.
Modeled on the person-centered approach, the art-ists of PVA work independently and use the media of their choice. Some draw, paint on canvas or wood, use textiles or build sculptures. Others take photographs in the community, write and illustrate original stories
Meet the artists
To fully appreciate the workings of the
PVA studio, it helps to be introduced
to some of the artists. Susan Brown is
one of PVA’s most prolific artists, and
has been drawing since she was a small
child and was diagnosed with autism at
the age of four. As an adult, she worked
as a dishwasher at Friendly’s Restaurant
where she used found cardboard to
make her signature grid-like paintings.
Now in her tenth year at Pure Vision Arts,
Susan Brown has become a fixture at the
studio. Over the years, she has created a
vast collection of paintings that reflect
her own personal experiences.
Influenced by her childhood memories
of growing up on Long Island, Susan’s
work most commonly depicts images
of transportation, landscapes and her
favorite subject: her mother. When asked
about paintings of her mother, Susan
can list the exact date she wore each
dress or blouse and the history of the
garment represented. Susan shares her
father’s great love of music and grew up
in a home where the record player was
always on. Each day she brings in a col-
lection of CDs to play in the studio. Her
style is lyrical and improvisational like the
jazz she listens to while painting.
Susan has a long exhibition history. In
addition to PVAs’ exhibitions, Susan’s
work has been shown at the Outsider
Art Fairs in New York City, the Hamptons
and in Vienna, at the Ricco Maresca
Gallery, the United Nations, the PS122
Gallery, the Olof Gallery in the Nether-
lands, the City Museum in Washington,
DC, and the Museum of American Folk
Art amongst many others. Her work has
been written about in publications such
as Out of Art, Envision Folk Art Magazine
and in Debra Hosseini’s The Art of Autism:
Shifting Perceptions. Susan’s landscape
paintings were included in Jill Mullin’s
first volume of Drawing Autism, and the
second volume features her art on the
cover. The art of Susan Brown is cel-
ebrated by many and is also included in
various private collections.
Oscar Azmitia began attending PVA in
2006 as a full time participant. He was
born in Manhattan in 1978 and home
schooled by his mother while living in
Brooklyn and Queens. Since attending
PVA, Oscar has created many paintings
that depict his knowledge of Biblical
stories. With an extremely close atten-
tion to detail, Oscar is currently working
on a series of miniature enamel paint-
ings on coins. Fascinated by antiquated
architecture, Oscar also paints build-
ings and landscapes of New York City
on found items such as vintage record
albums and New York City Subway
Metrocards. This month, The McCarton
Foundation will honor Oscar with the
Genius of Autism award to acknowl-
edge his artistic accomplishments.
Chase Ferguson is another adult on
the spectrum who attends PVA daily. A
multi-faceted artist, Chase draws, paints,
sculpts, and works in mixed media. From
an early age, Chase has been fascinated
with transportation, especially trains.
As a child, Chase loved to build trains
with toy building blocks and make sets
out of paper. Over the years he has
perfected his unique technique and
created hundreds of trains, cars, buses,
parking meters, and traffic lights out
of recycled paper and cardboard. His
work will be included in an upcoming
exhibition at Art Enables in Washing-
ton D.C. entitled Outsider Art Inside the
Beltway. In January of 2014, Pure Vision
Arts will have an exhibition at The New
York Transit Museum in Brooklyn includ-
ing transportation inspired art where
Chase’s work will be featured.
INDIVIDUALITY IS KEY—(Left) Susan Brown’s acrylic “Breakfast Table”
on cardboard. (Right) Various vehicle sculptures made out of paper and
mixed media by Chase Ferguson.
26 ART AND CREATIVITY
or make animated vid-eos. The studio is a place where artists are free to develop their own “pure vision” from within and not from formal instruc-tion or copying other source material. The PVA studio provides an envi-ronment that facilitates socialization, the sharing of ideas and peer men-toring while working in a supportive atmosphere.
VIABLE VOCATIONSPVA a lso br ings v i s -ibility to the artists and educates the public on the important role of art in the autism com-munity. Collaborating with other organizations i s ex t remely impor-tant in achieving these goals. New York City’s Museum of Modern Art facilitated an eight week sculp-ture workshop in the studio, where a teaching artist introduced techniques in plaster-of-Paris, wire and clay.
Regular guided tours to the museum and group discussions, where the artists had opportunities to discuss their pro-cess, accompanied the lessons.
The Whitney Muse-um also provided a four week workshop on pho-tographs and their role in inspiring paintings, drawings and sculpture. PVA artists were given digital cameras which they used at the mu-seum and on field trips in the community. The final workshop culmi-nated in an exhibition in a Whitney studio as well as a final critique.
The art studio views making art as a viable vocation and the studio represents each artist by
scouting opportunities to exhibit and sell his or her work. While some artists continue to build their portfo-lios, many make commissioned pieces or create work for
A SUPPORTIVE ATMOSPHERE—PVA provides opportunities for both creative and social growth.
OUTSIDE THE BOX— Cardboard parking meters made by
Chase Ferguson.
future art exhibitions. It is each artist’s decision to sell his or her art, and signed consents must be obtained prior to any sale. Once a work is purchased, the art-ists receive a fifty percent commission; the other fifty percent goes back to the studio to cover the cost of art materials, framing and exhibition expenses.
Ultimately, Pure Vision Arts is about community building, creating social change, and celebrating neu-rodiversity by promoting and legitimizing the cultural contributions of artists with autism. Many of the artists have led amazing lives and the sheer power and unique-ness of their expression add greatly to our humanity. The studio strives to advance society by breaking down negative misperceptions and stereotypes about people on the spectrum.
SUMM ART AND CREATIVITY 27
The studio is a place where artists
are free to develop their own ‘pure
vision’ from within and not from
formal instruction or copying other
source material.
POSSIBILITIES ABOUND— (Left) Oscar Azmitia’s enamel paintings
on New York City MetroCards (Above) Susan Brown’s iconic polka dot
“Her Mother” painting on cardboard.
FIND OUT MORE
Pure Vision Arts website www.purevisionarts.org
Facebook page www.facebook.com/PureVisionArts
To schedule a visit, call PVA at (212) 366-4263
28
Budget-friendly, at-home programs to increase functional communication in children with autism…
B Y A L I X S T R I C K L A N D
Th e nu m b e r o f children with au-tism in the US has
risen from one in 5000 diagnosed in 1975 to one in 250 in 2001, to one in 54 boys and one in 252 girls in 2013. The numbers have in-creased so rapidly that professionals are rush-ing to learn what they need to know to offer appropr iate suppor t and help to families raising these children. Even with new profes-sionals graduating in related fields each year, the demand for autism services far outweighs the amount of available autism services.
PARENTS AS THERAPISTSAs the parent of a child with au-tism, you are constantly searching to stimulate and teach your child as well as learning to communicate suc-cessfully with him. Sometimes the interaction you crave with your child seems out of reach. It is essential to have a “magic box of tricks”—ac-tivities that are fun and challenging enough to increase your child’s func-tional communication.
Given proper coaching, parents can be their children’s best thera-pists. There are many benefits to working directly with your child. Working together to accomplish goals builds a very strong family bond. Creating together builds the bond not only between parents and the child with ASD, but with typi-cally developing siblings as well. In addition, creating your own materi-als for your child’s home program
is budget-friendly and eco-friendly.
CREATE THE ENVIRONMENTM a ny p eop l e w i t h A u t i s m S p e c t r u m Disorders have sensory integration difficulties making the processing of everyday sensory information such as sounds, s ight s and smells a challenge.
Before sitting down to work w i t h your child, make sure that your space i s c lean and free of clutter. Soft lights and classical mu-sic provide an excellent background for work-ing with a child on the
autism spectrum. Make sure you present one activity at a time in an environment that is somewhat neu-tral to minimize distractions during your work activity.
BUILD YOUR OWN DIY THERAPY TOOL-KITYou have a wealth of available home program materials sitting around your house at this very moment. Re-using materials is eco-friendly and affordable. With minimal resources, you can create some pretty fabulous learning tools.
Below you will see listed the ma-terials required to create all of the featured educational materials for your child. Warning: once you realize all of the fabulous learning opportu-nities you can create for your child with the simplest of household ma-terials, you will be hesitant to ever throw away another toilet paper roll or egg carton again!
Do It Yourself!
Re-using materials
is eco-friendly and
affordable. With
minimal resources, you
can create some pretty
fabulous learning tools.
28 DIY AUTISM THERAPY
BIG
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K
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29 DIY AUTISM THERAPY 29
A visual schedule with a twist.Materials needed:
StrawsLaminating machineLaminating sheetsPlastic cupTape
At the beginning of your home program, you want to get your child used to sitting at the table with you, following simple instructions and tak-ing turns. A visual schedule can be very helpful for children of different ages and skill levels on the autism spectrum.
To get started, take photos of your child’s favorite activities and snacks. Print them out in a small format. Laminate them. When done cut each individual item out and attach with tape to straws. Take turns choosing a straw with your child. One at a
time, you or your child will choose a straw and then complete the activity featured in the photo attached to the straw. As an added bonus, children who are reinforced by a drink of any kind (juice, sparkling water) could have a sip of their favorite drink after
successfully completing the activity.You can select activities and foods
of your choice for this project. Here, the straws feature photos of a juice box, cars, a wooden bead toy, the gar-den (to go outside), a musical toy, a board game and a Dr. Seuss book.
A friendly dinosaur token system.Materials:
ClothespinsGreen construction paperMarkersLaminating machineLaminating sheetsScissorsVelcroPhotos of favorite activities and foods
Draw a dinosaur of your choice on the green construction paper. You can ask your child to color in the dinosaur with markers. Laminate your dinosaur and cut it out. Attach a piece of velcro in the middle of your dinosaur. Prepare your pictures by printing and lami-nating them and then cutting them out. Select the number of clothespins
you will use with your child. Each clothespin will correspond to one activity the child must complete before getting the re-enforcer featured in the pho-to. Each time the child completes an activity, remove a clothespin.
When all of the clothespins have been removed (all of the activities have been completed), deliver the promised item as a re-enforcer for your child’s hard work.
30 30 DIY AUTISM THERAPY
USE YOUR DIY MATERIALS TO WORK ON A VARIETY OF SKILL DOMAINS.By creating these materials with your child, you are engaging him in a social activity that creates a stronger bond with you, decreases the child’s stress by oc-cupying him with a fun and engaging activity, increases his fine motor skills and increases his focus and ability to concentrate. You will use each of your home-made educational materials to increase your child’s functional com-munication with you. If you have other children in your family, you can include them in these projects to increase sibling interaction and communication as well.
Each material that you prepare can be used in several different ways to help increase your child’s functional communication. As your child pro-gresses in his skills, you can adapt your home-made learning materials to meet his needs and help him to progress to the next skill level. On the following
page, you will learn how to use each material in two different ways depend-ing on your child’s skill level. For our purposes here, a “Beginning Learner” is a child who is not yet fluently vocal
who may be beginning to use sounds and words to request what he wants. An “Intermediate Learner” is a child who is using words to ask and answer questions and share information.
BIT BY BIT— Applied behavior specialist Alix Strickland incorporates do-it-yourself tools
for her clients at the Le Chemin ABA VB Learning Center in Paris, France.
31 THERAPY, BEHAVIOR, AND LIFE SKILLS 31
RICE TREASURE BOXESMaterials needed:
Clear BPA-free container
Rice
Small figurines / items of your choice
Hot glue gun
Fill your container with rice and small,
preferred items collected from around your
home. Put the small items in the box. Using the
hot glue gun, glue the container shut.
Early Learner: Have your child shake the box. Take turns labeling
the items you see as a game.
Skills taught: controlling and coordinating hands (to shake con-
tainer), labeling (known as a “tact”), taking turns.
Intermediate Learner: Have your child shake the box. Take turns
asking each other to find an item based on certain characteristics,
for example, “Show me the red one” or “Show me the bird”.
Skills taught: controlling and coordinating hands (to shake container),
labeling, taking turns, identification by characteristics.
FARM STORY BASKETMaterials needed:
Basket
Farm animal figurines
Farm animal puppet
Farm animal sounds CD
Scene mat (you can draw this or buy one as shown)
Play tractor
Your box will be organized by theme. You can create a new box
based on any theme that you choose. This is a story box based on a
farm animal theme.
Early Learners: Hold the box out of the child’s reach. Guide the child
to point to, sign for, exchange a picture for, or ask for each item in the
box depending on how your child is requesting at this time.
Skills taught: eye contact, pointing, requesting (known as a
“mand”), social interaction.
Intermediate Learners: Have the child request each item in the
story box from you. Take turns asking and answering questions
about the items in your story box. This activity has several varia-
tions. You can create a realistic or imaginary story using the items in
your box depending on the current verbal skill level of your child.
Skills taught: eye contact, pointing, requesting, social interaction,
asking and answering questions, taking turns, creating a realistic or
imaginary story with various characters.
STORY STONESMaterials needed:
Salt dough
Draw string sachet / bag
Paper, computer, printer
Images (your choice)
Laminating sheets and
laminator
Salt dough recipe:
½ cup salt
½ cup water
1 cup GF flour
Directions: mix the 1 cup of flour and ½ cup of salt in a
bowl. Add the wtaer slowly until you have a dry dough. You
may not need to use all of the water. If your dough is too
sticky, add more flour. Make small round and somewhat
flattened “stones” from the salt dough. Put in the oven on
low heat for 3 hours. While your story stones are baking, print,
laminate and cut out your images. When your story stones
are hardened and cooled, use a clear decoupage glue to
attach them to your story stones. Wait to dry before using.
Store in a drawstring bag.
I prefer using salt dough stones rather than real stones be-
cause of the added fun of making the salt dough with your
child. These are also softer and lighter than real stones which
makes them less dangerous just in case they get thrown.
Early Learner: Take turns picking a stone, holding it up and
saying what it is.
Skills taught: following instructions, sensory play, eye con-
tact, focus, labeling, taking turns.
Intermediate Learner: Take turns picking a stone from the
bag and asking questions about the images on the stones,
such as “What color is the dog?”, “How many scoops of ice
cream are on the cone?” or “How is the boy feeling?” These
questions are different levels of difficulty. Your activity must
be adapted to your child’s level.
Skills taught: following instructions, sensory play, eye
contact, focus, labeling, taking turns, asking and answering
questions (may include colors, WH-questions, etc.).
The possibilities for DIY, budget and eco-friendly educational
materials are endless. Making
these at home with
your child creates
unlimited oppor-
tunities to guide
your child’s
functional
communication
while having fun.
THREE HOMEMADE EDUCATIONAL MATERIALS TO CREATE WITH YOUR CHILD
When and How to Find A New Home for Your ASD Child…
B Y C H R I S T I N A A D A M S , M FA
Is your child scaring the heck out of you, refusing direc-tions or getting too big to handle? Are you ill, worn out, or even feeling suicidal? Is everything okay but your
adult child wants his own place? These are normal reasons for seeking a new home for your spectrum child. While a special sadness can accompany this task, it’s absolutely true that positive growth for parent and child can occur.
If the idea of moving your child away from home makes you cry or feel guilty, here’s one reason why. The negative stigma associated with placing a child in a residence, i.e., “putting him away,” comes from a time when people with disabilities weren’t seen as fully human and had few legal protections. Sadly, the Civil Rights era of the United States failed to include persons with disabilities, so the change in their rights status came later, after laws were passed in response to media exposes of inhumane residential institu-tions. These shocking abuses left a permanent scar on the image of out-of-home care.
But in many Western countries, today’s disabled person is assigned a government caseworker and the right to help determine his or her own care, so they’re entitled to a good residential setting. Some do currently exist, although we face a lack of quality homes to shelter the upcoming tidal wave of ASD kids, many of whom are very impaired, but
others who are sociable, highly functional and need work and college. The needs of people on these opposite ends of the spectrum, from Asperger’s to profoundly autistic, remain largely unaddressed in group homes designed for calmer, more intellectually disabled people. Still, when a family is in crisis, it must take what it can get. That’s why investigating placement or housing for your ASD child is smart even when you don’t think you’ll need it—but espe-cially when it seems like you might.
“Placement” is a term often used for kids who need a more intensive or independent environment than home can offer. While placement is emotionally and practically challenging, it’s governed by similar but different rules for adults with disabilities. Your child’s developmental agency caseworker can guide you through them.
HOUSING FOR CHILDRENSome children are very difficult from birth. There are young children who rarely sleep, or are so aggressive they send adult caregivers or other kids to the hospital. Early interven-tion can help, but their issues are often well-documented and the idea of placement becomes apparent early. This may also hold true for medically complex ASD kids who can’t use the toilet or communicate, or have seizures and other
32 EDUCATION SPECIAL32 EDUCATION SPECIAL
Time for a Change
It’s All in the Details —
A group home designed by
Purple Cherry Architects uses
pod structures with linking sitting
rooms to create a secure outdoor
courtyard and additional interior living
areas for socialization or de-escalation.
conditions. As these kids grow, their size may enhance the difficulties of caring for them.
In other ASD kids, troubling issues can emerge from ages 11-14, even in successful Asperger-type kids who are “done” with autism intervention. “They internally start to ‘rumble’ and are more likely to explode at home,” ex-plains Nancy Donnelly, M. Ed, executive director of New Vista School and chair of the Orange County Autism Task Force. “They start to get bullied more; people make them know they are different. They get angry and depressed. Suicide language comes up: ‘I’m gonna kill myself.’ It re-ally means, ‘I have hit a wall and don’t know what to do, so I use society’s language to tell you how I feel.’” Families are sometimes destroyed by center-ing their entire lives around a child who needs intensive care and supervi-sion, wrecks the house, causes work loss or law enforcement problems, or is simply so sad he needs a fresh start. Parents find this a “wrenching decision because they feel they are abandoning the child,” says Donnelly. “But that’s not the case. Now everyone gets to live a reasonable, productive life and the child gets the opportunity to develop skills, live within boundar-ies and interact.”
UNDERSTANDING THE SYSTEMWhen school-age children need more protection and supervision than a family can manage, the parents should contact their state develop-mental agency. Before a family is offered full-on residential placement, many in-home options are offered. Day care aides for working parents, home behavioral services, par-ent training, home respite workers, and one-to-one aides for behaviorally challenged kids can keep a child func-tioning smoothly. In-home staff can handle the personal care duties, protect parents from injury and take the child on community outings. However, if parents accept in-home staff, they must hire and train their own people or use an approved agency. Both involve scheduling, su-pervising, letting staff in and hosting them in the home. The daily paperwork and loss of privacy are draining, even with good employees. Other realities include staff turnover, absenteeism, poor agency management, or hav-ing a bad employee steal from you or file misleading Child Protective Service reports, because most approved care workers are mandated reporters.
One interim option is out-of-home respite care in a small family group home (called “empty bed” respite in California, for just one night or up to three weeks per year). Other placements include emergency crisis homes for children who
need short-term (three months or less) emergency care due to aggression, self-harm or other intense needs.
As you climb the ladder of choices, residential or psy-chiatric schools are another rung. School districts might fund placement for highly disruptive, traumatized, and medically or psychiatrically complex students if their learn-ing is being impeded—and in case of wrong-doing by the school, districts sometimes offer them in a settlement deal. They can cost $10K or more per month, so seek advice from a special education attorney. If your child is throwing chairs, sent home repeatedly, eloping, or has been injured or caused injury, he might qualify for funding.
If you want your child to move out, stay close to home and attend a local school, a small family group home placement is the first-line choice (although every case is individually based and exceptions to the rules are always possible). The child must have qualifying condi-tions and display certain deficits or behaviors (which also determine the type of group home or care he needs), but it’s actually surprising how eas-ily many kids with ASD meet these criteria when the family’s stresses and child’s behaviors are honestly disclosed to the agency. Ask for a parent team meeting and make sure you give notice to record the pro-ceedings 24 hours in advance. Keep in mind that if your child moves to a non-crisis group home, the child’s education is served by that school district. And when a child is placed,
a parental share of costs is determined based on the family’s income and special needs.
EXPLORING THE OPTIONSHaving spent time with teens on the spectrum, plus “typical” teen legal plaintiffs who’d suffered in abusive group homes and bad foster care, I’ve visited a few group homes and psychiatric hospitals. Walking into one for the first time can be emotionally agonizing for any par-ent, even more so when you have a child with special needs. However, I urge you to take time to look around, talk to staff and meet the kids. I was very moved to see the director of two homes crying on my first visit to her teen group home. A boy she’d had for two years expe-rienced a seizure and had just departed for a medically fragile home, and she was missing him. Although her home was more cluttered than I liked, it was nonetheless beautiful and warm in a gated luxury community, with constant laundry running, two sets of shoes left outside the door so the boys didn’t track mud in, and many hugs and snacks when they arrived from school. I also visited
AGES & STAGES 33
…everyone gets to live
a reasonable, productive
life and the child gets
the opportunity to
develop skills, live within
boundaries and interact.
a grandma-run home where her family members pitched in to raise five seriously impaired male teens, showering them with church hymns, southern cooking and constant hugs. These friendly homes reminded me that an ASD child probably won’t care if the décor is dated or the mail isn’t sorted every day—and while you might not get a perfect place, you may get a perfect caretaker.
For families in crisis, other options may include partial or full temporary hospitalization in a child psychiatric facility (paid for by insurance sometimes). These facili-ties can evaluate a child and his current medications, provide on-site or day program education, and release
the child when stabilized. The key to accessing them is getting a medical or emergency provider to admit the child. Developmental agencies also offer special nursing facilities if needed.
Often, parents can’t see or accept that their beloved child belongs in a particular placement, even in a crisis, because no place will be like your home. Just remember: no treatment or placement is necessarily permanent, and such changes can create progress. The more you talk to other (even non-ASD) parents, the more you discover how common placements are: it’s just that people don’t often discuss it.
The Ideal Group Home — A well-organized floor
plan supports easy circulation and staff monitoring.
34 AGES & STAGES
There are also a few traditional “institutions,” hospitals or developmental centers still open for people with diag-nosed intellectual disabilities plus very severe behaviors such as extreme aggression, self-harm or eating of non-food objects, although clients are admitted only under rigid circumstances. If your child has such challenges, discuss all the options with your child’s psychiatrist and develop-mental caseworker.
ADULT HOUSING OPTIONSMany families plan on keeping their adults with ASD home for a lifetime. While that can be okay for some,
often the child matures more fully from living elsewhere. Additionally, parents might find themselves without suf-ficient income, space or health later in life. In Orange County, California, a county elder care specialist told me she’s seeing more undiagnosed ASD adults in their forties left without resources by parental illness or death. One small area homeless shelter already has two adults with autism. The need has just begun to rise, and housing is not keeping pace.
Children of any age might receive in-home support services from their developmental agency, in order to keep them in the family home. For adults 18 or over, if they
AGES & STAGES 35
36 AGES & STAGES
are not under a conservatorship (which grants parents or guardians the right to make decisions for the child), or parents were denied a conservatorship in court, a parent cannot make service decisions. If the adult child chooses not to have services, he may be terminated. He would then only be entitled to services such as state/federal medical benefits, welfare and SSI Income (SSI ranges from $700-900 per month—and for a family on welfare, the payment might be higher, a situation likely to occur for some families due to ASD-related loss of parental em-ployment). And even conservatorships have their limits: a parent cannot prevent a consumer from having a sex life or getting married without a legally significant reason, although individual out-of-home placements may have certain rules for residents.
If you can’t keep your child at home or treat him to his normal lifestyle without services, he might have to learn “the hard way” there’s not enough money to support his special interests, computer activities or eating out. An adult with ASD is going to have preferences and like any adult child, you may not agree with them and have to use “tough love.” If they don’t wish to live within your rules, they would need to accept services or find another place to live.
There are many levels of housing for adults with ASD. Woodbine House has published an easy new guide called Moving Out which offers several housing models, from forming a group home, using your own home, and support-ed or independent apartments. This guide even provides checklists for adult children and parents to figure out their feelings and desires. Because many parents have a long-cherished dream of buying or leaving a home for their adult kids, Moving Out even outlines the financial, tax and management issues required to accomplish it. Still, stepping into established options is the easiest way to go.
For now, the fastest housing is an established group home. These typically serve four to six adults of the same sex. You can obtain a list of those with openings from your developmental service agency. When you call, you’ll be asked a few questions about your child, which may earn you a visit. He or she might be offered a trial overnight or week-long visit to see if the fit is right. A patchwork of funding applies, so cooperation with state developmental and housing agencies is required.
There’s also adult foster care, which is a nice option if the host family has good chemistry with your child. Some people do this to provide company for their own disabled child in addition to earning extra money.
Apartments are also popular. Often a low-income Section 8 housing voucher makes sense (although waiting lists can be a decade long—sign your child up as soon as he’s 18). Your agency coordinator can look for a roommate who already has a voucher to speed things up. Then an indepen-dent agency or individual can provide the appropriate level of care, ranging from intermittent visits to daily support. You can also rent the child a room in your house, or he can
Top 7 Housing Considerations
It’s clear that whatever living situation a person with
ASD needs, seeking it must be done with extreme
care and sensitivity for everyone. Current options are
not easy to access and some are not the high quality
we want. Parents need to advocate for more thought-
ful living situations. In the meantime, families can rest
knowing there’s a place for their kids if it’s finally time
for a change.
Things to consider:
Look over the weekly menus, ask for a list of
cleaning chores, inspect the bedding, and look
for health hazards.
Ask about residents’ rights and privileges: are
they posted? Do you see residents using their cell
phones or watching movies of their choice?
Are there video cameras in public areas? How are
nonverbal residents treated to ensure their safety
and communication?
Ask about use of restraints, behavior rewards pro-
grams, and consequences for infractions.
Observe how workers interact with residents. Do
they treat them warmly, know their likes and dis-
likes? Or do they speak disparagingly of them?
Ask when staff is allowed to leave the facility or be
alone with residents, and under what circumstances.
Check with the local police for past incident reporting;
contact your state licensing board for past violations
and operating requirements.
AGES & STAGES 37
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live with a caretaker, and his SSI goes toward rent payment (a client may be allowed to keep $135 a month for personal needs). Some state programs offer minimum wage to care-takers of disabled or elderly people, and an autistic person can qualify for a significant amount per month in California in caregiver funds (In-Home Supportive Services).
INVISIBLE SUPPORTSOne emerging form of apartment living is Glennwood House in Laguna Beach, California, a new apartment com-plex with “invisible supports.” Up to 63 young single adults with various mild-moderate disabilities including ASD have moved into a former senior living complex overlooking the Pacific Ocean. Despite not qualifying for developmental agency dollars (due to the past experience with larger “in-stitutional” settings, the local agency won’t fund anything over six beds), founder Randy Larson managed to scrape together donations from regular and celebrity folks to fund this remodeled facility where $1,900-$2,500 per month includes a dining hall, chef, medical and nutrition staff, activity director and outings, and an entitlement coordina-tor to maximize residents’ benefits.
An endowment to reduce monthly fees and build a job placement program is being created. Residents’ SSI payments can be used toward rent, but Glennwood doesn’t insist on re-ceiving the checks, as many group homes do. Mini-fridges in rooms and packed lunches are available, although no in-room cooking is permitted by the fire code. Dating is accepted, although sex is only al-lowed off-campus according to their “house rules.” Although several residents are on birth control as it’s their personal right, getting married or having children means residents must leave the “single life” and find family-friendly living facilities.
“Laguna Beach wrapped their arms around us, but other com-munities have not, because they see residents as different,” says Stacey Enmeier, Assistant Director. “Agencies want small housing, but the reality is that neighbors or residents are not prepared. It takes time to maintain social skills and relationships in the community, especially when parents are gone,” cautions Enmeier, and funding for housing and this type of social safety net are just not there, she states. “Loneliness and isolation can be the result of small community housing,” so friendship and social
interaction is included in Glennwood’s mission. “Residents must volunteer somewhere,” says Enmeier. “We want people to know them as Johnny who works in the community, not Johnny who lives at Glennwood. That sentence should never be said. We all walk around with our own issues, but we don’t label ourselves with them, so why should people with disabilities?”
RESOURCES
Guide to Living Arrangements for Adults with Developmental Disabilities (California) www.rcocdd.com/consumers/description-of-services/
residential-services/its-all-about-options/guide-to-living-
arrangements-for-adults-with-developmental-disabilities-2/
Guides for under and over 18 (California): www.rcocdd.com/consumers/description-of-services/
residential-services/
Moving Out www.woodbinehouse.com
Chart outlining California costs and care levels of service/
housing options
www.rcocdd.com/wp-content/uploads/pdf/consumers/
OptionsGuideChart.pdf
38 BIOMEDICAL UPDATE
Forever and a day” may sound cliché, but that’s how long the journey from New York to Australia seemed to take. After a six-hour flight to Los Angeles and
a three-hour layover, I boarded a Qantas double-decker for the long haul to Melbourne. During the night I asked a flight attendant how long we’d been in the air. “Nine hours,” he said. “Halfway there.”
Australia may be a world away, but most Americans will feel at home there. I did. I was also excited about the purpose of my trip. I was heading Down Under not for tour-ism, but to work on a groundbreak-ing documentary, From Acrodynia to Autism: Mercury Across Generations, More Evidence of Harm, sponsored by SafeMinds, about the mostly forgotten illness, acrodynia, more commonly called “Pink Disease” in Australia.
Pink Disease ravaged children in Europe, North America and Australia in the first half of the 20th Century. Many did not survive. The name comes from the fact that many children de-veloped raw, peeling hands and feet. Other symptoms included social withdrawal, lack of eye contact, loss of language, repetitive and self-injurious behaviors, body-rock-ing, toe-walking, sensitivity to light, noise and touch, low muscle tone, immune dis-orders and respiratory problems.
Sound familiar?Some researchers and parents sus-
pected the ghastly symptoms were caused
by teething powders, typically applied in Western countries to the gums of children at about six months of age. One ac-tive ingredient in most brands: inorganic mercury.
The profitable teething-powder industry, along with scientists and medical experts, insisted the pow-ders were harmless, and essential to the health of a developing child. They noted that most exposed chil-dren developed no symptoms (only one in 500 kids given the powders got the symptoms), so it could not be the source. The fact that symp-toms appeared around the same time children were teething was purely coincidental.
I wrote extensively about acro-dynia in my book Evidence of Harm, largely because the symptoms were so like those of autism. Lyn Redwood, Sallie Bernard and other SafeMinds parents recognized the similarities and published a paper, Autism: A Novel Form of Mercury Poisoning, that gave side-by-side comparisons of
Repeating HistoryInvestigating Pink Disease Down Under Highlights its Many Similarities to Autism…B Y D AV I D K I R B Y
TOXIC TIMES—Mercury-containing products such as Calomel and
teething powders, commonly used in the first half of the 20th century,
are now known to have seriously injured countless young children.
I was always screaming,
crying continuously…I had
a red rash. They didn’t
know what was wrong.
BIOMEDICAL UPDATE 39
mercury toxicity and autism. At one point, Redwood found a photo in an old acrodynia textbook depicting a pale, droopy-eyed, sickly boy who could barely hold his head upright. She compared it with a picture of her own son, Will, at the same age. It looked like the same child.
The survivors of Pink Disease are now well into middle age, or older. Their stories had never before been put to film. SafeMinds commissioned the documentary, which was produced by film students from Swineburne University of Technology in Melbourne. We spent 10 days travelling around the gorgeous subcontinent to interview a handful of Aussie survivors. The stories we collected were gripping, moving, and heartbreaking.
SURVIVING MERCURY’S TORMENTThere was no question who our main character would be: Heather Thiele, a long-term survivor who created a Pink Disease support group in Australia in the 1970s. Heather lives with her husband in a modest farmhouse on the eastern edge of the Outback, near the tidy town of Dubbo. I wrote about her in my book and we had corresponded. It was great to meet this legend.
We spent an entire day in-terviewing Heather. What a tale she had to share. As a girl, her symptoms mirrored those of autism. “They started at six
months, and they got particularly bad from nine months to about 18 months,” she says in the film. “I would have con-vulsions for hours at a time, and my mother would have to put me into cold water to get my temperature down.”
Heather also wrote a paper detailing the ordeal of her childhood. “Immediately, I became lethargic, sensitive to noise, light and touch, lost my appetite and consequently lost weight alarmingly. I lost muscle tone and I found it hard to hold my head up or sit, and although I was on the verge of walking, I became like a floppy doll. The skin on the soles of my feet and palms of my hands became bright pink and began to peel off. I would scream if placed in a bath, so my mother started “washing” me with olive oil and cotton wool. Nothing seemed to pacify me, and I would go for days with-
out sleep. My mother says my cry was more like the whimper of a frightened animal, and could last for periods of 24 hours or more, without a break.”
She also engaged in repetitive behaviors. “I’d be sitting, and rock-ing backwards and forwards,” she recalls in From Acrodynia to Autism. “I’d bang my head along with the rock-ing.” She also walked “on tippy-toes” until she was 10. No wonder Heather felt “very isolat-ed, I felt like I was being smothered.” Keeping eye
YOUNG VICTIMS—Early descriptions of Pink Disease noted that
the children affected had faces that “reflected sadness.”
THE ACRODYNIA ERA—(Left) The campsite at Eildon, one of many set up for victims of Pink Disease. (Right) Heather Thiele and her twin brother Les at the age of two.
BIGSTOCK
40 MERCURY MENACE: SPECIAL REPORT
contact with others was almost impossible, leading one teacher to admonish her, “You look at me, you ignorant little girl, when you talk! Don’t you look away!”
Everywhere we travelled, we heard similar stories.Elizabeth Meyers was interviewed in downtown Syd-
ney. “I couldn’t stand to be touched anywhere on my body, and screamed and cried day and night,” she says in the film. “My mother stayed home, of course, to look after me. I was very irritable, crying, clammy. I’d been sitting, and I regressed back to lying.”
About an hour south of Sydney rests the beautiful beach town of Wollongong, home to acrodynia sur-vivor Peter Hobbs, who lives on, yes, Mercury Street. Peter has suffered severe health impacts of mercury poisoning since he was a baby. “I was always screaming, crying con-tinuously,” he recalls on film. “I had a red rash. They didn’t know what was wrong.” He also had, and con-tinues to have, severe respiratory problems. “I would stop breathing in my sleep and they would have to put me in a tent and start me up again with an oxygen tank,” he says. (Will Redwood was also hospitalized for respiratory problems and required breathing treatments and oxygen as a toddler).
Heather, too, battled respiratory disease, a known ef-fect of mercury exposure. She had pneumonia “dozens of times” as a child, and also slept at an angle to drain mucus. For many, breathing problems persist. “About a third of the survivors have bronchiectasis, which affects the cilia in the bronchi, so the lungs can’t work properly.”
One awful attribute of Pink Disease that differs from autism is early death.
Janice Collins lives in the fresh-air town of Goldburn, nestled under lush green mountains between Sydney and Canberra. Five of her siblings died in infancy, three of them from Pink Disease. In the town where Heather was born, 19 children developed acrodynia. She was the only one to survive, even though the doctor told her mother, “She’s so ill, she’ll never make school age.”
MERCURY, AUTISM AND ACRODYNIADavid Austin is a psychologist, autism researcher and par-ent of a young son with severe autism who lives outside Melbourne. He was instrumental in the making of From Acrodynia to Autism, in which he provides a riveting account of his research.
“Mercury naturally finds its way to the brain,” David explains on film. “In humans, it can get through the blood-brain barrier. But then that’s not the end of the story because the mercury’s still there, so the mercury can still go on, bind to other sites, kill other cells, interrupt other enzymes.”
David came across a book describing acrodynia symptoms and was astonished. “It read exactly like you would write a case study about an autistic child,” he
marvels. “The withdrawal from so-cial contact, the loss of eye contact, the loss of language, the irritability, the banging the head against the wall or beating your head with your fist, the light sensitivity, the sleep disruption. I was speechless after reading this book.”
He is convinced that “the research is very clear: there’s an association between mercury and autism.” As-suming that people who developed Pink Disease were born with “an idiosyncratic sensitivity to mercury,” he adds, “then potentially that would carry through to the descendants of Pink Disease survivors.”
Taking that logic a step further, he notes, “If mercury is somehow as-
sociated with having autism, you would then expect to see more autism amongst the descendants of people who survived Pink Disease.” To test that theory, David and col-league Kerrie Shandley undertook a painstaking survey of survivors in Australia, and their descendants, using information culled from Heather Thiele’s support group.
“We received the data on thousands of children and grandchildren of those survivors. The autism rate amongst them was one in 25,” he says. “Compared to our national prevalence, matched birth year to birth year, of about one in 160. So we had a seven- or eight-fold elevation in autism. But only one in 500 exposed children got Pink Disease. So we knew that there was this individual sensitivity.”
The study, published the Journal of Toxicology and Environmental Health investigated the hypothesis that autism can result from the interaction between mercury and a genetic predisposition to heavy-metal sensitivity. “The large elevation in autism prevalence in this group of children was startling, especially given that rates of other childhood disorders were at expected levels,” the authors wrote. “The thing that differentiates these children from the general population, to which they were compared, is
What is astonishing, and the central, poignant message of
From Acrodynia to Autism, is that humanity was warned, over and over
again, that people and mercury simply do not mix well.
SIGNS & SYMPTOMS—Many victims of
Pink Disease developed red peeling skin on
their hands and feet.
MERCURY MENACE: SPECIAL REPORT 41
a family history of mercury sensitivity. We were simply blown away by the results.”
One person who was not surprised was Heather. “I think there’s a higher inci-dence of autism and ADHD and all those behavioral prob-lems in families of Pink Dis-ease people. There is a defi-nite connection,” she says. “I relate fully to autistic people. I feel that they’re so much like me. I’ve used the fact that I have symptoms the same as autism to explain to people that both are caused by mer-cury. People are only too will-ing to understand that.”
UNHEEDED WARNINGS/UNDENIABLE TRUTHSAs the film points out, chil-dren today are exposed to mercury in many ways: food, air, water and vac-cines, to name a few. Such cumulative exposure to mercury, both pre- and post-natal, would clearly be more dangerous to those children with a genetic sensitivity, a DNA-based vulnerability inherited from their parents and grandparents.
Several interviews con-firmed what the paper re-ported. Janice’s son and grandson, for example, both have Asperger’s. Then there is the case of Audrey Neilson, a Pink Disease survivor in the town of Newcastle, north of Sydney, whose daughter Caroline Williams has severe ADHD and grandson Steven has Asperger’s.
“Steven was extremely clingy as a baby, he liked his own company even back then,” Caroline says of her son. “His teacher had noticed that he’d sit on the chair and rock.” Steven himself now won-ders if he and his grandmother were both poisoned by mercury. “I never thought Pink Disease had anything to do with As-
perger’s, until now,” he says. “But I’ve had mercury in my vaccinations. And I’ve got a grandmother who’s survived an awful lot of mercury, so it’s possible.”
It is possible that Steven was negatively impacted by mercury just as his grand-mother had been many de-cades before. What is as-tonishing, and the central, poignant message of From Acrodynia to Autism, is that humanity was warned, over and over again, that people and mercury simply do not mix well.
“Humans seem to have been so slow, glacial, in do-ing something about mer-cury,” says David Austin, stating the tragic but unde-niable truth. “We’ve known how toxic it is for millennia, but it seems like we keep having to suffer catastro-phes to remind ourselves of mercury’s toxicity.”
Heather Thiele is equally perplexed, and saddened, that children around the world are still being need-lessly exposed to mercury, especially thimerosal, a full century after Pink Dis-ease first began claiming its small victims. “I have great anxiety over the fact that this happened, that we were poisoned, and there was no apology,” she laments near the close of the film. “We have suffered a life different to what it should have been. And now I see history repeating itself
in the vaccine/autism story.”Heather, an Australian survivor typi-
cal of that country’s rugged, stoic endur-ance, exhorts viewers at the end of the documentary to, “Refer back to the hum-ble, simple people like myself to say what it’s like,” she says plaintively. “Don’t ever let this happen to another generation.”
Symptoms and Similarities between Acrodynia and AutismPink Disease (Acrodynia) Symp-toms from L’Acrodynie by A.W. Cameron, 1931 and PD survivor Heather Thiele
Autism Symptoms from Autism: A Novel form of Mercury Poisoning, Bernard, et. al. 2001
Mood alterations describes as a loss of joyfulness. If someone comes close to them they move away or cry.
-
to be alone.In most children there is irritability. The -
recovery of IQ.
-Self-injurious behaviors to self and
-
iors.
behaviors.
-tional fears. (Catatonia also recently
unnoticed. Also sensitivity to sound and touch.
aversion to touch
Diarrhea has been described in the
discomfort and colitis.Loss of eye contact and
joint attention.
-lems.
Click here to watch
From Acrodynia to Autism:
Mercury Across Generations, More Evidence of Harm
As parents, we are continu-ously evolving. Our parent-ing style shifts and changes
as we obtain new and more evolved ways of parenting. Change is not always comfortable. However, when accompanied by learning and self-growth, the silver lining will most often appear.
Once we learn that our child has a diagnosis, whether it’s autism or something else—it’s the awakening of our new self. This is the self that is required to stand in his or her adult shoes, for there are mountains and hills to climb, as well as pastures to appreciate. While our blueprint for parenting has likely been modeled on how our parents raised us, when faced with a new landscape, we may find we need a new blueprint. When we take time to reflect on how we were parented and how we are parenting, what we want to give our children and what we do not want to pass onto our children, this opens the doorway to mindful parenting.
What is mindful parenting? In an article in Clinical Child and Family Psychol-ogy Review, September 2009, Duncan, Coatsworth, and Greenberg outline five aspects of mindful parenting:
1. listening with full attention
2. non-judgmental acceptance of self and child
3. emotional awareness of self and child
4. self-regulation in the parenting relationship
5. compassion for self and child
If, in our own evolution, our com-mitment is to parenting mindfully, the day can begin in a chaotic whirlwind or it can begin from a point of calm. The difference is not dependent on what our morning entails, but rather how we choose to attend to it. Each morning we awake to a new day and another opportunity to feel joy, peace, calm, happiness—we pick the feeling.
You see, we, as parents, all have our “stuff”—our issues, our challeng-es: with or about our children, or spouses, and some of us may realize we have our own fears. I like to view a challenge as a gift. Can you envi-sion a challenge or a frustration as a present? Try it. Imagine that you have been presented with this “gift” and although it doesn’t appear as a wanted gift, you have received it nonetheless. Wrap this situation in the most ap-pealing giftwrap; be as creative as you can. Take a slow, deep breath—hold
the breath—and gently exhale. Feel your body—how is your body con-nected to the earth? Are you sitting on a chair? Standing on your feet, barefoot or in shoes? Envision yourself grounded, secure and a part of the earth. To be grounded means to focus on the ground and your connection to it. Grounding is a simple yet useful exercise for both adults and children. When someone is ungrounded, they may feel light-headed or unstable, dis-tracted. If you can’t keep your feet steady sitting in a chair, constantly fidget, have a hard time focusing, have sleep and energy issues and are very emotional, these can be signs of be-ing ungrounded. Some advantages of being grounded are increased atten-tion, accuracy in reading social cues, the ability to choose your thoughts and accompanying emotions, and an overall sense of calm and well-being. Being grounded supports anyone in being proactive rather than reactive.
To help yourself or your child feel more grounded, here are some tips: envision your feet with roots cascad-ing through the rich, cool soil, pic-ture yourself connected to the core of the earth, your foundation is strong, stable, enabling you to sway and move flexibly, yet knowing and feeling you have a firm confidence that all is well. As you imagine yourself being con-nected to the earth’s core breathe deeply and slowly, pulling the energy from the core up into your feet and through your body. You may feel an increased sense of calm and confi-dence as you focus on this exercise. With it may come the awareness that you can handle what lies before you. This gift is the opportunity that is meant to be yours. You have found your own route to self-regulation, you have modeled this for your child and this enables your brain’s function to move from a “fight or flight” response to one of focus and choice.
42 TIPS FROM THE TEAM
The Parenting Evolution Moving from “fight or flight” to focus and choice…
B Y L A U R E N Z I M E T
LAUREN ZIMET, MS/CCC/SLPLALAUURREENN ZIZIMEMETT, , MTPassionate about giving children a healthy start in life, Lauren Zimet, MS/CCC/
SLP, is a speech, language and early communication specialist with more than 15
years of professional experience. Lauren is the founder of The Healthy Founda-
tions Program, which facilitates brain health education in Georgia, teaching
children about their brains and bodies in order to make healthy life choices. A
strong advocate of brain health, Lauren supports parents on complex journeys,
facilitating the use of nutritional support for learning and behavior, self-esteem
and social thinking. Lauren can be reached at healthyfoundationsatlanta.com or earlyinsights.com.
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TIPS FROM THE TEAM 43
Not too long ago, I had a pa-tient in my clinic who had been treated for some time by an al-
ternative medicine practitioner. The parents were hopeful, but frustrated by the lack of progress their child was making both health-wise and develop-mentally. They had done some supple-mentation, dietary interventions, and even hyperbaric oxygen, but nothing was making a significant impact. I went through all of the patients past lab work and although there was a lot of blood, urine, and stool testing, one thing was missing that could impact all of it—MTHFR mutation testing.
MTHFR?MTHFR stands for Methyltetrahydro-folate Reductase (although it has earned itself a popular nickname among autism parents!). It is a critical enzyme process in the methylation and folate cycle that recycles homocysteine to methionine. If there is a significant enough block in the enzyme process or an increased demand, detoxification will not be able to keep up and chronic inflammation and oxidative stress will ensue. There are over 60 signs, symptoms, and medical conditions associated with or caused by the MTHFR mutation. (www.MTHFR.net). Here are some of those conditions:
Who Should Get Tested?In a word: everyone. Even in the sample listing above, there is not an age group not at risk for some of the potential
complications of having this mutation. The testing is relatively easy to get as it is a blood draw that can be run by the regular lab companies Labcorp and Quest in addition to specialty com-panies like Spectracell. There is also a much more comprehensive test of all the nutrigenomic mutations and their potential risk factors for diseases avail-able by the company 23andme.
What To Do With the Results?There are two main mutations identi-fied in most MTHFR testing. There is the A1298C and the C677T. Both have two copies as they are on both strands of the double-helix DNA in our cells. You can have one copy of one (hetero-zygous) or two copies (homozygous) for one mutation, or one copy of both (complicated heterozygous.) The differ-ent combinations are significant as they vary in the severity of the blocking. The C677T is most commonly referred to as the more severe form, but more and more researchers and clinicians are finding reasons to treat the A1298C form as well. The best way to get the results interpreted and treated appro-priately is to find a practitioner well versed and experienced in the various combinations of MTHFR mutations and how to treat them.
TreatmentsThe treatments for the MTHFR muta-tion involve avoidance of toxicities, improving dietary intake of high anti-oxidant/nutrient dense foods, and the right supplementation. One thing to remember about supplementing for this mutation is that not all supple-ments are the same quality and just getting more folic acid in your diet is not enough. There is evidence that folic acid supplements, most commonly prescribed for MTHFR, may not be the best form to give and what is needed is the broken down form, folinic acid.
This is again where choosing a prac-titioner experienced in treating the mutations is very important.
There are four excellent resources to learn more about MTHFR supple-ments, toxin avoidance, how to clean up your home and environment, and also how to find and cook delicious, nutrient-dense food.
Environmental Working Group www.ewg.org They will show you what is in your food, home, and environment and how to minimize your exposure.
Healthy Child, Healthy World www.healthychild.org This is an excellent resource for the family and for kid-friendly, safe products and foods.
Mother Earth News www.motherearthnews.com This provides a wealth of information on toxin avoidance, homesteading, organic gardening, and natural health.
MTHFR.net www.MTHFR.net Created by Dr. Ben Lynch, ND, this site has information regarding the mutation, what supplements are beneficial, and how to reduce the impact on future generations.
Unscrambling “MTHFR” The genetic mutation test you don’t want to miss…
B Y B A R R Y S M E L T Z E R
BARRY SMELTZER, MPAS, PA-C BABARRRRYY SSYY MEMELTLTZEZ R...is the owner of Healing
Provisions PLLC in San Antonio
and specializes in biomedi-
cal and environmental
medicine interventions to
assist in healing the body.
He has dedicated his career
to healing children and families after his own
son was diagnosed with multiple medical
conditions, from which all he has significantly
improved. Barry has presented to both local
and national organizations including TACAnow,
Holistic Mom’s Network, San Antonio Natural
Parenting, Any Baby Can, National Autism As-
sociation and Autism One. He has also written
several articles for the Autism File and Autism
Science Digest. Barry is happily married to his
wife of 15 years, Linda, and is the father of five
wonderful children.
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Sample Conditions associated with MTHFR
Autism ADHD
Addictions: Smok-ing, Drugs, Alcohol
Tongue tie, cleft pallet
Miscarriages Migraines
Blood Clots Chronic Fatigue/Fibromyalgia
Potential Drug Toxicities: Metho-trexate, Nitrous Oxide, etc.
Cancer: Oral, Rectal, Gastric, Leukemia, etc.
Common sense practices allow for a healthier lifestyle without breaking the bank… B Y D E I R D R E I M U S
Of all the reasons to go green—health, style, environmental responsibility—affordabil-
ity does not often top the list. Or-ganic, natural products and food are typically more expensive than their conventional counterparts because manufacturers use better quality ingredients and less toxic growing practices, two factors for which con-sumers pay a premium.
But deciding to live a purer life, for your own benefit and for that of your family, shouldn’t come with a hefty price tag, and it doesn’t have to. You’ll be surprised just how easy, affordable, and fun it can be to integrate green into your everyday by thinking just a little bit outside the box (and then making sure to recycle it!).
TRASH THE TOXINSAccording to the U.S. Centers for Disease Control and Prevention, more than 90 percent of poisonings occur in the home, and noxious cleaning products are among the most common culprits. One of the easiest ways to make your home a greener (and safer) place to live is by trashing toxic cleaning products full of ammonia, bleach, phosphates, petroleum solvents, phenols, and other harmful, disease-causing ingredients.
Rather than risk your children’s health—and risk emptying your bank account by purchasing pricey green
cleaning products—look no further than your own cupboard for inexpen-sive, effective alternatives.
Distilled white vinegar works bet-ter than any toxic disinfectant you can buy, and is notably cheaper: a gallon (128 ounces) of the stuff can be had for less than three dollars, whereas the
same money will buy you just 32 ounc-es of conventional all-purpose cleaner.
As I note in my book Green This: Greening Your Cleaning, the benefits of white vinegar are many: it can dis-solve mineral deposits and grease, re-
move mildew or wax buildup, polish some metals, and deodorize almost every room of your house. It cleans just about every surface in your home except for marble, and just a table-spoon of white vinegar acts as a won-derful fabric softener.
If white vinegar seems too good to be true, the news only gets bet-ter, because making a vinegar-based cleaning solution is remarkably easy. Simply pour equal parts water and vinegar into a spray bottle preferably one free of the chemical bisphenol-A, and voila—you’ve concocted a home-made, ridiculously efficient, reason-ably priced cleaning solution.
Other environmentally sound cleaning agents that won’t break the bank, and that you probably already have on hand, include baking soda (it scrubs shiny materials without scratching, deodorizes refrigerators, cleans jewelry and stainless steel, to name just a few uses); lemon juice (a natural odor-eater that cleans glass and Formica); table salt (combine it with lemon juice to clean copper, or with vinegar to polish brass); and hydrogen peroxide (dilute it to remove stains from clothing and other surfaces).
The advantages of using these prac-tical ingredients to clean extend be-yond your wallet. Using such natural agents immediately improves the air quality in your home, which in turn extends to improving your health, and lowering the chances that you or your family will contract an associated ill-ness. Additionally, by not purchas-ing—and then repurchasing—clean-ing products from the store, you’ll accumulate fewer plastic bottles and save money on gas, thereby decreas-ing your carbon footprint.
DEIRDRE IMUS...DEDEIRIRDRDREE IMIMUSUS...…Deirdre Imus is president and founder of The Deirdre Imus Environmental Health
Center® at Hackensack University Medical Center, founder of dienviro.org, a website
devoted to environmental health, and co-founder/co-director of the Imus Cattle Ranch for
Kids with Cancer. She is a New York Times best-selling author, and a frequent contributor
to FoxNewsHealth.com, and Fox Business Channel. In her quest to clean up the
environment for our kids, Deirdre developed the award-winning Greening the Cleaning®
program and product line, which replaces the hazardous ingredients commonly found in
cleaning agents with non-toxic plant-based ingredients. Deirdre has been the recipient of numerous awards
and honors for her impact as a leader in the field of environmental health.
…by not purchasing—and then repurchasing—
cleaning products from the store, you’ll
accumulate fewer plastic bottles and save money on gas, thereby decreasing your carbon
footprint.
Going GREEN on a Budget
44 GREEN HOME — HEALTHY KIDS
GREEN HOME — HEALTHY KIDS 45
KEEP THINGS LOCALAnother way to go green, do right by the planet, and pad your bank account all at the same time is by changing not just the foods you eat, but how you acquire them. Organic produce is pricey—there’s no two ways about it. Rather than sacrifice quality, stop and think about where your fruits and veg-etables come from. Is the farm within 100 miles of your home? In the same state? The same country?
Chances are, the longer the journey from farm to table, the more you’ll pay for organic produce because of the increased resources required to get it to the market—specifically gas. This is why buying locally grown organic goods is key, and not just because it can be more affordable. When pro-duce is grown close to where you live, it is eaten and enjoyed in its prime, particularly when it is in season; de-pending on where you live, this can mean asparagus in late spring, and apples in the fall.
Going green on a budget also means prioritizing. Which aspects of green living are most important to you, and therefore worth dishing out a few extra dollars? While eating a diet comprised entirely of organic foods could potentially save you money on medical bills in the long term, this savings is difficult to appreciate at the supermarket, where organic items are sometimes twice as expensive as their non-organic equivalents.
That’s why it’s important to know which conventionally grown fruits and vegetables are “dirtiest”—or most laden with toxic pesticides—and which are cleanest. Every year, the Environmental Working Group releases its list of The Dirty Dozen and The Clean Fifteen in an effort to help consumers decide when buying organic is most prudent.
For instance, strawberries, spinach, and sweet bell peppers routinely top the list of most contaminated produce. If you’re going to eat and enjoy these nutritious items—which you undoubt-edly should—it’s probably worth shell-ing out the extra cash for the organi-cally grown version.
BREAK SOME HOUSEHOLD HABITSAdopting a more environmentally responsible lifestyle means chang-ing habits, particularly around the house. These small but seismic shifts will also save you money, and offer the opportunity to teach your kids what it really means to be a citizen of the Earth.
Start an organic garden. If this task seems overwhelming, begin with just a plant or two to become familiar with the process. Eating homegrown fruits and vegetables cuts down on food costs, and teaches your kids an important lesson in self-sufficiency. Somehow, produce grown in your own yard tends to taste more delicious than that grown elsewhere. Just make sure you’re doing it right: The Daily Green offers on its website a wonderful guide to organic gardening. http://www.thedailygreen.com/green-homes/latest/organic-gardening-tips-460309#slide-1When possible, replace old electronics and appliances with those that bear the government-backed ENERGY STAR label. They’ll run more efficiently, thereby lowering your monthly electricity bill and allowing you to invest in other green technologies for your home.
In 2012, bottled water sales in the U.S. totaled $11.8 billion, according to the International Bottled Water Association. This exorbitant statistic means a chunk of every American’s paycheck goes toward bottled water consumption, to say nothing of the plastic waste our addiction to bottled water creates. Rather than feed the beast, invest in a reusable water filtration pitcher. Most brands can be had for a pittance ($30) compared to the price of continually buying bottled water, and they last for years and years. When it comes to greening any aspect of your life, and doing it on a budget, common sense prevails. Want to save money on plastic and paper goods? Use those dishes collecting dust in your cabinet. Turn the lights off when you leave a room, and instill this simple, money-saving practice in your kids. Explain to them that lowering energy consumption reduces greenhouse gas emissions, and is good for all creatures on the planet.
It’s never too late, or too early, to make small changes that can have major repercussions—on your wal-let, on your health, and on our col-lective future.
Note: Information provided herein is not intended to treat or diagnose any health condition. As always, consult your healthcare provider with any questions or health concerns.
46 NUTRITION SOLUTIONS
B Y P A U L W H I T E L E Y ,
M A R K E A R N D E N
& E L O U I S E R O B I N S O N
Bench to KITCHEN: Introducing The Autism Food Club
Experimental investigations sug-gestive that the use of a gluten- and casein-free (GF/CF) diet
may ameliorate some of the more
disabling characteristics of autism spectrum disorders (ASDs) have been quite a constant feature in au-tism research history. Coupled with
a tide of recent research reports illu-minating the potential mechanisms for a dietary effect, the requirement to translate research findings from “bench to kitchen” has never been more important. The Autism Food Club (www.theautismfoodclub.com) aims to bridge that gap.
Anyone with a personal or profes-sional interest in autism has probably heard about the GF/CF diet, and the suggestion that at least for some on the autism spectrum, dietary inter-vention might be another tool in the intervention arsenal.1 Accepting that autism is a very heterogeneous con-dition—possibly better described as the “autisms”2—more often than not accompanied by other development and/or physical comorbidity,3 the no-tion that dietary intervention might potentially impact on the presenta-tion of the condition is for some, seemingly at odds with the percep-tion of autism and its fundamental nature.
Skepticism, even outright scien-tific hostility in some quarters, still follows mention that the GF/CF diet might impact on the presentation of at least some cases of autism. This, despite experimental evidence which at least points to an interesting rela-tionship between the proteins gluten (present in various cereal grains) and casein (from mammalian dairy pro-duce) and some cases of autism. That
PAUL WHITELEY, PHD...PPAAULUL WWHHIITETELELEY,Y, PH... Paul is a researcher in autism fairly well known (or at least he likes to think so) for
his investigations looking at the use of dietary intervention for autism spectrum
conditions. With a University educational background built up in the North East of
England based in Psychology, he’s spent over 15 years of his subsequent postgradu-
ate research career examining various aspects of autism and has authored over 20
peer reviewed papers on the topic including the results of experimental trials of the
gluten- and casein-free diet for children with autism. He has a passion for science
and the accurate communication of science forged during his doctoral studies and nurtured by various
teaching duties and conference presentations. This led him to set up a blog about various facets of
autism research as well as writing for several lay and professional journals and magazines on various
science related topics. The importance of food and diet to mental health and wellbeing represents the
centre-point to his career, and how the relationship between food and our physiology goes so much
further than mere subsistence and physical health.
ELOUISE ROBINSON, DIETITIAN...ELELOUOUIISESE RROBOBININSOS N... Elouise is a Dietitian who studied at Leeds Metropolitan University. During her
placement year she found a passion for working around health prevention, and
was invited by the public health team she spent time with, to work with them after
completing her degree; this allowed Elouise the opportunity to work with families, edu-
cation settings food companies and catering departments. Moving on Elouise has then
specialised in working around health promotion for children, including working to sup-
port families with all types of food allergies and conditions which require therapeutic
diets out in the community to be able to have school meals. Elouise has a passion for cookery and develop-
ing new recipes and written many recipes to support families including a recipe booklet for fussy eaters.
MARK EARNDEN, CHEF...MMARARKK EEARARNDNDEENN, , CH... Mark is a chef to trade and a successful entrepreneur who is involved in several
enterprises and business investments. Mark was the founder of the award winning
Food Education Company in which he sold his interest in 2012. Mark has coupled
his business knowledge with his catering and education experience to develop and
launch innovative and creative businesses. Mark believes passionately about the
importance of health, wellbeing and education together with igniting a passion and
belief in young people that they too can succeed in life. Mark’s business’s represents
his success in these fields and reflects his passion for developing innovative businesses and creating
healthier communities. In addition to running businesses Mark also provides healthy food demonstra-
tions with a difference where he entertains and inspires audiences for clients in a wide range of sectors
together with campaigns and media work. In 2011 Mark was asked to join the Percy Hedley College
board of governors, which he jumped at immediately, having been involved with the foundation for 7
years. Being involved with Percy Hedley has provided Mark with first hand experience of the challenges
faced by parents and professionals who care for individuals with autism.
NUTRITION SOLUTIONS 47
and the myriad of personal accounts, the so-called N=1, detailed in peer-reviewed journals, books, blogs and magazines reporting some positive effect following dietary change.4
Some of the most recent reviews of the evidence surrounding the use of the GF/CF diet for autism5 while not wholly confirmatory, highlight how for some on the autism spec-trum, dietary intervention is an important addition to other educa-tional and behavioural interventions. Positive changes to areas of commu-nication, attention and hyperactivity represent some of the more common-ly reported observations despite the current lack of clarity on the charac-teristics of potential responders and non-responders.
Our group, ESPA Research, has for several years been involved in research looking at the potential ef-ficacy of the GF/CF diet for cases of autism.6,7 Our goal has been the application of the scientific method to answer the question of whether dietary intervention can ameliorate symptoms and improve aspects re-lating to quality of life. Our collected efforts in this area have to a large extent been aimed at those involved in science and the policy-makers who use science as their informer. For people with autism, their par-ents and/or caregivers, siblings and concerned others, interest surrounds this type of intervention, but only a few reliable sources of informa-tion concerned with translating this world of science into practice exist. The very practical notion of “bench to kitchen” reflective of translating research into real-life strategies lags
behind when it comes to dietary in-tervention for autism.
In 2012, a chance introduction led to a meeting between autism researcher Paul Whiteley, dietician Elouise Robinson, and chef Mark Earnden. The discussions which ensued around the gap between re-search and its application to real life brought about the idea of devising a resource to bridge this gap. The Autism Food Club (www.theau-tismfoodclub.com) was born.
Our ideas are simple: translate the science around dietary inter-vention for autism into something readable for everyone and offer a range of tasty, balanced and easy to make recipes which are gluten- and casein-free. Making it an on-line re-source offers a way to make the idea accessible to all no matter where they are. Making it free continues that theme of accessibility for all irre-spective of wealth or circumstances.
The fusion of science and cookery is perhaps not the typical expectation one might have of autism research and practice. We quickly realized that even for those who consider themselves
Science is all around us. That is observation, experimentation and the gathering
of evidence as part of the process of science. It’s these processes which inform
questions and hypotheses about who and what we are. With that most valuable
of commodities in mind—life—science is also starting to provide insight into how
health and ill-health come about and the potential value of certain medicines or
interventions in treating various facets of ill-health as and when it happens.
Even with a complicated and highly varied condition like autism, science contin-
ues to inform us about the potential underlying reasons of how and why autism
might come about. It also provides tantalising insights into how we might be able
to relieve some of the more distressing aspects of autism and positively impact on
quality of life.
But science can be a complicated affair. In the age of soundbites and social media,
the sheer quantity of science being produced, the technicality which often accom-
panies science and the variable quality of the reporting of science can sometimes
contribute to inaccuracy and distortion.
At The Autism Food Club we will cut through the volumes of sciences produced
and provide you with a simple roundup of the important science relevant to autism.
Jargon-free and provided in bite-sized chunks, we’ll provide regular updates about
how science is informing us about autism and importantly, how that science is being
practically translated into improving quality of life for those on the spectrum.
The fusion of science
and cookery is
perhaps not the typical
expectation one might
have of autism research
and practice.
48 NUTRITION SOLUTIONS
REFERENCES
1. Whiteley P. et al. How could a gluten- and casein-free
diet ameliorate symptoms associated with an autism
spectrum condition? Autism Insights. 2010; 2: 39-53.
2. Whitehouse AJO. & Stanley FJ. Is autism one or multiple
disorders? Med J Aust 2013; 198: 302-303.
3. Kohane IS. et al. The co-morbidity burden of children
and young adults with autism spectrum disorders.
PLoS One. 2012;7(4):e33224.
4. Herbert MR. & Buckley JA. Autism and dietary therapy:
case report and review of the literature. J Child Neurol.
2013. 28: 975-982.
5. Whiteley P. et al. Gluten- and casein-free dietary
intervention for autism spectrum conditions. Front
Hum Neurosci. 2012; 6: 344.
6. Whiteley P. et al. A gluten-free diet as an intervention
for autism and associated spectrum disorders:
preliminary findings. Autism. 1999; 3: 45-65.
7. Whiteley P. et al. The ScanBrit randomised, controlled,
single-blind study of a gluten- and casein-free dietary
intervention for children with autism spectrum
disorders. Nutr Neurosci. 2010; 13: 87-100.
non-scientists, questions about the evidence around dietary interven-tion were frequently being asked and frequently only answered in “science-speak”. This is part of a larger issue of the communication of science and in particular, the need to demystify science and the jargon which often follows. Translating the language of research is a core feature of the Autism Food Club. The practical implementa-tion of the GF/CF diet also represents a vital part of the Autism Food Club. Sure there are resources out there in cyberspace and other media offering recipes and meal ideas which are glu-ten- and casein-free (even free of lots of other types of food) but recipe ideas created and endorsed by a qualified dietician and practicing chef were in short supply. By saying this, we are not trying to belittle the often huge efforts made in this area. Merely that
having everything in one place with some professional oversight might be advantageous to many people.
Our plans for the Autism Food Club are ambitious. By subscribing for free to the monthly newsletter we publish containing GF/CF recipes and a sprinkling of science relevant to dietary intervention and autism, we hope to offer a one-stop shop for those thinking about the GF/CF diet and easing the often daunting prospect of employing such an all-encompassing intervention. We’re not by the way trying to replace your medical doctor or dietician (our ad-vice is always going to be to include healthcare professionals when such an intervention is contemplated), merely to complement the advice that they might give and provide access to some professional and re-liable meal-time ideas.
Coconut rice pudding with coconut topping Makes 4 servings
Coconut Rice
1 C (200 grams) long grain white rice
13 oz. (1 can) coconut full fat milk
2/1/4 C (500 ml) water
2 tsp. pure vanilla extract
1 tsp, cinnamon
4 T (80 grams) agave nectar
or honey
Topping
2 ½ T (40 ml) water
¼ C (50 grams) sugar
2 heaping cups (200 grams)
shredded (desiccated) coconut
1 tsp. vanilla extract
¼ tsp. salt
Method
To make the topping, bring the water to boil, add the sugar and allow to simmer
for 5 minutes stirring so all the sugar dissolves and a thick syrup begins to form.
Add the coconut, vanilla and salt and stir constantly for about 7 minutes until the
mixture is dry; set aside. In a medium saucepan, combine the rice, coconut milk
and water. Cover and bring to a boil over medium heat. Once it reaches a boil,
reduce the heat to low and simmer until all the liquid is absorbed into the rice.
Add the vanilla extract, cinnamon, and agave nectar and stir to combine. Taste
and add any extra vanilla extract or cinnamon according to taste. Serve either hot
or cold with coconut topping.
SPRINKLING OF SCIENCE
While eating the bark of a tree might not sound too appetizing, cinnamon is
one of the more flavorsome products, offering real warmth of taste to various
sweets and desserts. This spice also packs a potentially important punch when
it comes to its various health related properties, showing some quite marked
antiviral properties and possibly helping to regulate blood sugar levels.
EDUCATION SPECIAL 49 EDUCATION SPECIAL 49
Sticky pork ribs, with baked potato and coleslawMakes 4 servings
For poaching the ribs:
3lbs (1.5 kg) pork spare ribs
Water, to cover
1 onion, chopped
2 garlic cloves, lightly
crushed
1 carrot
1 bay leaf (optional)
½ tsp. black peppercorns
Marinade/ Sauce
1 small onion
4 cloves garlic
1 T rapeseed oil
2 tsp. smoked paprika
2 tsp. Chinese five spice
1 tsp. cayenne pepper
1 tsp. cumin
3 T brown sugar
1 tsp. salt2⁄3 C (150 ml) malt vinegar
1 T tomato puree
2 T brown sauce
1 T Dijon mustard
1 tsp. dried oregano
2 limes, zest and juice
Method for ribs:
Place the ribs into a large, wide
saucepan or stockpot over a high heat.
Add enough water to cover and add
the rest of the poaching ingredients.
Bring to a boil, then reduce the heat
and simmer, covered, for 30 minutes,
then allow to cool in the water.
Method for marinade:
Blend the onion and garlic in a food
processor or blender and add to a
deep frying pan with the oil. Fry for 4-5
minutes, or until the onion and garlic have
softened. In another pan, add the smoked
paprika, Chinese five spice, cayenne
pepper, and cumin; allow the spices to
toast and release aromas; add your toasted
spices to the onion and garlic mixture,
then add the brown sugar and cook for
a further 1-2 minutes, until the sugar has
melted. Add the rest of the marinade
ingredients. Bring to a boil, then reduce
the heat and simmer for ten minutes, until
thickened. Preheat the oven to 455 F (180
C). Remove the ribs from the poaching
liquor and place onto a baking tray. Spoon
the marinade over the ribs, turning to
make sure they are completely coated.
Place into the oven to roast for 30 minutes,
or until sticky and heated through.
Remove from the oven and slice the rack
into individual ribs.
Jacket potato4 large baking potatoes
2 T olive oil
flaked sea salt to taste
Method
Preheat the oven to 400 F (200 C). Wash
the potatoes well, dry them and prick
several times with a fork. Pour a quarter of
the olive oil into your hands and rub over
each potato, then scatter over some sea salt
which should stick to the oil. Place directly
on the rack in the oven and bake for
1¼–1½ hours, depending on the size of the
potato. When cooked, the potato should
be golden-brown and crisp on the outside
and give a little when squeezed. Serve
split open with diary free spread if desired.
Coleslaw 1 large onion, grated
2 carrots, grated
1 small white cabbage, finely shredded
10 radishes, finely sliced
1 red pepper, deseeded and finely sliced
1 apple, grated
1 T pecans
1 T raisins
1 T grain mustard
3 T mayonnaise
Juice of one lemon
Sea salt and freshly ground black
pepper to taste
Method
Mix all the ingredients in a large bowl,
season to taste
SPRINKLING OF SCIENCE
A staple part of the “Mediterranean diet”, olive oil is a tasty
and potentially healthy alternative to other sources of fat
used in cooking preparation as well as enhancing many
dishes. A rich source of vitamin E and with numerous studies
indicating a potentially important effect on aspects of heart
health, the peppery taste of olive oil makes for a delightful
accompaniment to many dishes.
50 NUTRITION SOLUTIONS
Cream of Broccoli Soup (This soup can be frozen so larger batches can be made).
Makes 4 servings
2 T rapeseed or olive oil1⁄2 large onion, peeled and chopped
2 large stalks celery, finely chopped
4 cloves garlic, peeled and chopped
2 to 3 tsp. dried thyme
½ tsp. chopped fresh rosemary
1 tsp. freshly ground black pepper
4 ¼ C (400 grams) chopped broccoli,
stalks and tops, fresh or frozen
5 ¼ C (1.25 L) water
1 gluten-free stock cube or
1 T homemade bullion
1 ½ C (150 grams) blanched almond
or almond flour
Handful of fresh parsley,
finely chopped
Sea salt to taste
Method
In a large heavy based pan,
heat the oil, add the onions
and gently cook for 10
minutes or until soft. Add
garlic, thyme, rosemary
and pepper and cook for
a further 2 minutes. Add
the broccoli, homemade
bouillon or stock cube,
water, almond and parsley,
cover and simmer for 20
minutes. Blend the soup,
either with stick blender
or in a processor (you may
need to do this in batches).
Check the seasoning and
alter to taste; you might also want to
add more liquid to get a consistency
you prefer.
NOTE: If using frozen broccoli, you may
need less water.
SPRINKLING OF SCIENCE
A member of the cabbage family,
broccoli is one of the most instantly
recognizable vegetables and makes
a colorful addition to any meal. The
flowering head of the plant and
stem provide a wealth of nutrients
including vitamin C and vitamin K.
Vitamin C, more readily associated
with oranges and other citrus fruit, is
an antioxidant; deficiency of which
can lead to scurvy, the “sailor’s
disease” noted in times gone by.
Broccoli also contains glucoraphanin
which is converted to sulforaphane,
suggested to inhibit the growth of
certain cancers, something it might
do as a consequence of its epigenetic
properties (affecting the switching on
and off of certain genes). BIG
ST
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WALLIS: 1 IN 64 51
A Brilliant WeekTracking the progress of a promising young man… B Y C A R O L S T O T T
B rilliant,” said Wallis, when I asked him about the first week at his new school. And what a
cause for celebration it was.I first met Wallis over three years
ago, when he and his family were struggling to make sense of his dif-ficulties. Wallis had very few friends; he didn’t like school, some subjects were too difficult. He had lots of melt-downs; times when he just couldn’t cope. His words.
Helen, Wallis’s mum, said that he was an intelligent boy who loved reading and knew lots about history. She had been worried about Wallis’s behaviour for years; something was wrong. She couldn’t understand why he hated to be touched; she didn’t know why he had no friends or why he didn’t get invited to parties. He had lots of melt-downs and times when he just couldn’t cope. Her words.
Wallis was given a diagnosis of Asperger’s Syndrome (AS) by the BeginningwithA (BWA) team when he was almost seven years old. His very discrepant cognitive profile and escalating behavior problems were enough for us to support the family’s application for a statutory assessment and to request a specialist placement outside mainstream. The local educa-tion authority (LEA) now agreed to the assessment, and ultimately provided a statement of need, but refused a change of school. Wallis’s needs could
be met in mainstream, at his current school, they said. He left the school soon afterwards, when it became clear that this wasn’t really the case.
Despite the change of school (still mainstream) and extra help in the classroom, Wallis’s difficulties escalated to the point that almost everyone working with him was sup-porting the request for a specialist educational placement. His parents identified a local specialist school for children with ASD; they met with the head of the school, who said she con-sidered it an appropriate placement for Wallis and confirmed that there was a place available for him—if the LEA agreed. The LEA didn’t agree. They had now placed Wallis in a new school that was able to meet his needs, they maintained. The school was coping.
And perhaps it was, until the day Wallis had to be pulled from under a table, which led to a review of safety procedures and additional staff train-ing. It was a strange kind of coping. Soon after this, the school threw in the towel and notified the LEA that, they too, were unable to meet Wallis’s needs; they were not coping. More than three years after the initial re-quest, the LEA approved a special placement and this week Wallis went to his new school—a specialist school
for “high-functioning” children with an ASD.
Today (it’s Friday) I spoke to his mum about how things had been so far. “Well, we had a few meetings be-fore he went. I told them Wallis doesn’t like to be touched; it was amazing—they seemed to understand. I told them he would be very anxious about the transition; they knew he would be, and they had already been planning for it. It’s been really great so far.”
And when I asked Wallis what he thought? “It’s been a brilliant week,” he said.
Starting in the next issue, Wallis will be writing a regular column for Autism File magazine, where he will be telling us, in his own words, about his progress, his triumphs and chal-lenges, his struggles and his victories as he embarks on this new phase of his life. And let’s hope there are lots more brilliant weeks to come.
FIND OUT MORE
You can keep an eye on Wallis’s progress on
Facebook at http://www.facebook.com/
Wallis1in64
Winter 2013/14 TV show—third in the Wallis
1 in 64 series—will be available online soon
at http://information.tv/WatchLive/
FlashPlayer/?id=1. Check on the
Wallis 1 in 64 FB page for timings.
CAROL STOTT...CACARROLOL SSTOTOTTTT........ is a Chartered Psychologist
and epidemiologist special-
izing in the identification and
assessment of children and
adults with autism and related
conditions, and the co-found-
er of BeginningwithA, (BWA), a
diagnostic training and assessment consultancy
based in Cambridge, UK.
52 RESEARCH ROUNDUP
Promising Treatment PotentialN-acetylcysteine, BH4, gluten sensitivity, and more…
NAC AND AUTISM
Several studies in recent years have pointed to N-acetylcysteine
(NAC) as a possibly effective treat-ment in reducing the symptoms of autism. Perhaps best known for its use in treating acetaminophen (paracetamol) overdose, NAC, a glu-tathione precursor that has anti-oxi-dant effects, is also used in conditions where cysteine and related sulfur amino acids may be depleted. A case report from Ahmad Ghanizadeh and Nima Derakhshan follows the use of NAC in treating an 8-year-old boy diagnosed with autism.
Ghanizadeh and Derakhshan point out that neuroinflammation and oxidative stress are thought to play causative roles in the development of autism and that, “N-acetylcysteine may provide cystine, a precursor for glutathione (GSH), which is an important antioxidant factor in the brain.” The 8-year-old was given 800 mg NAC per day, initially as part of another study to counteract nail-biting. Not only did the nail-biting subside but after 30 days of treatment, the parents reported a “marked reduction” in autism symp-toms. Improvements were noted in social interactions, verbal skills and communication, while aggressive behaviors significantly decreased. Additionally, the parents noted that their son’s hyperactivity and lim-ited interests decreased and that the severity and frequency of an eye-blinking tic was reduced. They added that they had not seen these kinds of significant improvements even when the boy was taking Risperdone, cur-rently one of only two drugs the FDA
has approved for treat-ment of autism-related symptoms.
“While the Ghanizadeh paper is a case report and relies on parent report-ing, I do find there to be some interesting observa-tions here,” said Autism File editor ial advisor Dr. Whiteley. “I wonder whether the link with nail-biting and onwards anxiety suggested for NAC might also be part and parcel of the effect observed in this case given the quite considerable link suggested between autism and anxiety.”
Ghanizadeh A & Derakhshan N. N-acetylcysteine for treatment of autism, a case report. J Res Med Sci. 2012 Oct;17(10):985-7.
BH4: ANOTHER POTENTIAL AUTISM TREATMENT?
Tetrahydrobiopterin, also known as BH4, is a naturally occur-
ring essential cofactor of the three aromatic amino acid hydroxylase en-zymes, used in the degradation of amino acid phenylalanine. A BH4 deficiency increases blood levels of phenylalanine which can lead to health consequences including seizures, movement disorders, and behavioral problems. Researchers at Emory University in Atlanta con-ducted a double-blind, placebo- controlled trial using BH4 as a poten-tial treatment for autism in a group of 46 children, three to seven years of age, diagnosed with an autism spectrum disorder. The children were randomly given BH4 (20 mg/kg/per
day) or placebo for 16 weeks.While the researchers found no
global improvements using their pri-mary measurements, they reported that secondary measures indicated significant improvements in several areas including social awareness, hyperactivity and speech. Side effects in the BH4 study participants were reported to be minimal and similar to those in the control group.
According to Dr. Whiteley, “This paper is important because it adds to the already interesting evidence base on BH4 for at least some cases of autism. That and the quite impressive record on few and far between side effects of BH4 make for another inter-esting potential therapeutic agent.”
Klaiman C. et al. Tetrahydrobiopterin as a treatment for autism spectrum disorders: a double-blind, placebo-controlled trial. J Child Adolesc Psychopharmacol. 2013 Jun;23(5):320-8. doi: 10.1089/cap.2012.0127.
GLUTEN SENSITIVITY IN CHILDREN WITH AUTISM
As parents have been pointing out for many years, gastrointestinal issues
are frequently among the symptoms
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RESEARCH ROUNDUP 53
reported to accompany an autism di-agnosis. A paper published in June by Nga Lau and colleagues investigated the immune reactivity to gluten in a group of children with autism compared to asymptomatic siblings and typically developing controls. Specifically, the researchers looked for anti-gliadin an-tibodies (IgA and IgG), antibodies to deamidated gliadin, and antibodies to tissue transglutaminase (tTG), using se-rum samples from the Autism Genetic Resource Exchange (AGRE).
The authors report that in a subset of children with autism, there is an increased immune reactivity to glu-ten that is distinct from that found in celiac disease (an autoimmune condi-tion classically associated with gluten), and that, “The increased anti-gliadin antibody response and its association with GI symptoms points to a potential mechanism involving immunologic and/or intestinal permeability abnor-malities in affected children.”
According to Dr. Whiteley, “There has been quite a bit of talk in recent years regarding non-celiac gluten sen-sitivity. One has to wonder whether for some on the autism spectrum, a similar mode of action might pertain outside of the more classical celiac serology and markers.”
Lau NM. et al. Markers of Celiac Disease and Gluten Sensitivity in Children with Autism. PLoS ONE 8(6): e66155. doi:10.1371/journal.pone.0066155.
EPILEPSY AND AUTISM
Autism is often diagnosed alongside many other conditions in the same
individual. One of these comorbidities—that creates perhaps the greatest health concern—is epilepsy. A new study by Emma W. Viscidi and colleagues ex-amines the prevalence rates of epilepsy among children diagnosed with autism.
The findings of the population-based study include that:
12.5% of children with autism aged 2—17 also have epilepsy26% of children aged 13 and older with autism also have epilepsy
Additionally, epilepsy is associated with:Older age
Lower cognitive abilityPoorer adaptive and language functioningA history of developmental regressionMore severe ASD symptoms
“There are several potentially impor-tant lessons which can be learned from this data, not least when it comes to pre-dicting who with autism might eventu-ally go on to develop epilepsy,” said Dr. Whiteley. “There are also screening and clinical management ramifications for this particular comorbidity, and perhaps funding as well considering these times of limited resources and austerity.”
Viscidi EW. et al. Clinical Characteristics of Children with Autism Spectrum Disorder and Co-Occurring Epilepsy. PLoS ONE 2013; 8(7): e67797. doi:10.1371/journal.pone.0067797.
GUT BACTERIAL DIVERSITY AND AUTISM
As frequently pointed out here and in numerous parent reports and
published research, many children with autism also suffer from gastrointestinal disorders. Citing the implied link be-tween ASD and abnormalities in gut microbial functions, a research team at the MIND Institute at the University of California, Davis set out to define systemic changes in gut microbiome
associated with autism and autism-re-lated GI issues. Twenty children with autism and 20 controls were recruited for the study which then analyzed fecal DNA samples from the study partici-pants, comparing gut microbiomes of the GI symptom-free group with those from the children with autism, most of whom presented GI symptoms.
One of the study’s main conclu-sions was that the asymptomatic con-trol group “harbored more diverse gut microbiota than the autistic group did.” According to Dr. Whiteley,” When they looked at the presence of GI issues re-lated to cases of autism, there was some hint of an effect too on gut bacterial di-versity but it appeared that the severity of autism was a more important factor to potentially account for the microbial differences detected.”
The researchers also found that within the samples from the group of children with autism, there were significantly lower amounts of three types of bacteria: Prevotella, Coprococ-cus, and Veillonellaceae, “suggesting a potential influence of unusual diet patterns observed in autistic children.”
Kang D-W. et al. Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic Children. PLoS ONE 8(7): 2013; e68322. doi:10.1371/journal.pone.0068322.
IMA
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54 QUESTIONS & ANSWERS
As gluten-free options at grocery stores and restaurants continue to increase, many families are re-discovering the benefits of going GF...
QMy family was on a gluten-free diet sev-
eral years ago because of our son, now 11, who has autism. We thought we were seeing some benefits and gradually got away from the diet thinking he no longer needed it. We’ve started to see some regression and I’d really like to try this again. I’m having some trouble ac-tually going gluten-free with so much going on
between school and therapies, etc. Do you have any suggestions for starting down the GF path again?
AEveryone’s journey is different, just like every child is different.
We implemented the GF/CF diet as the first part of our biomed journey with our son, Kaden, when he was three years old. It was a game-changer when it came to his health and behavior. We removed gluten and casein and he became sensitive to soy, so we removed that too. Then he became sensitive to everything he ate—it was a vicious cycle and he ended up with such a severely restricted diet that we decided this was not the best way to work on his sensitivities.
We decided to go organic with ev-erything, increased his dosages of Hous-ton Enzymes, and let him eat everything in moderation. A new child emerged: he started talking again for the first time in five years. We found he lacked the enzymes to properly digest the food that he was eating which is why he was so sensitive to everything we fed him.
After six years, we are on the GF bandwagon once again with Kaden.
After doing some in-depth research on the potential effects gluten can have on children with autism and those with autoimmune issues, we learned about a disturbing farming practice. Many farmers spray their wheat with Round-up (glyphosate) to dry the crop out and bring it all to maturity uni-formly so they can harvest the fields all at once. As we all know, geneti-cally modified wheat is not approved to be grown in the U.S. at this time, but is nonetheless being done in some states. Round-Up is an herbicide used with gmo crops to kill weeds that can strangle crops or steal nutrients from the soil. Studies have shown that this herbicide is causing autoimmune issues in humans and animals, and many believe it to be a factor in the autism epidemic.
Upon going gluten-free again, my husband and our son have both had great results including:
Less brain fogDaily formed bowel movementsLess irritability (and for my husband, less joint pain)More energyIncreased expressive languageIncreased ability to handle transitionsBetter ability to try new foods and texturesLess stimming (OCD traits have also decreased)Better focus and attentionA happier attitude (less tantrums, and less need for redirection)
I purchased the book Wheat Belly by William Davis, MD http://www.wheatbellyblog.com/ and I highly rec-ommend this title to anyone thinking about going gluten-free. This has been
KIMBERLY LINDERMAN...KKIIMBMBEERRLYLY LLININDDER…Kimberly’s youngest child,
Kaden, was vaccine injured at
20 months and is recovering
from “autistic-like” symptoms.
She is the co-host of Linderman
Unleashed on Natural News
Radio, and is the Marketing
Director of Autism File Magazine.
CATHY JAMESON...CACATHTHYY JJAAYY MEMESOSON.…is a dual-certified teacher
with ten years’ experience in
early and elementary educa-
tion. Having stepped away
from the classroom to raise
her five children, Cathy is now
a full-time mother, advocate,
and writer. When her son Ronan started to show
signs of developmental delays, Cathy embarked
on a mission to find answers, help and healing—a
mission she continues to this day. She now writes
regularly about her son, vaccine injury, and par-
enting a special needs child with typical siblings.
Cathy writes with the hope that sharing her
experiences might help other families in similar
situations. She is a contributing editor for Age of
Autism, has had her work featured in Pathways to
Family Wellness Magazine, and is a co-founder of
The Thinking Moms’ Revolution.
Revisiting an Old Friend
RUTH E. SNYDER, RN...RRUTUTHH E.E. SSNNYYDE…is a nurse specializing in high-risk
pregnancy and natural childbirth.
She is the mother of four children,
two of whom were diagnosed
with autism. Ruth is an author and
advocate dedicated to improving
the lives of those with autism.
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QUESTIONS & ANSWERS 55
a life changing endeavor for our fam-ily, and according to the Wheat Belly blog and Facebook page, thousands of other people have benefited from going gluten-free as well.
The abundance of GF product companies has dramatical ly in-creased since our first gluten-free journey several years ago. More and more restaurants are getting on the GF bandwagon too, offering a gluten-free section on their menus. Almost every grocery store has a GF section for ready-made products or frozen meals. Additionally, shopping online for baking goods to make your own gluten-free meals from scratch is be-coming easier and can cut your costs dramatically.
You need to be aware that just be-cause it says gluten-free doesn’t mean it is a healthier alternative; read labels, watch out for other offending ingredi-ents such as GMOs, high fructose corn syrup, soy and preservatives, additives and colors. We strive for organic when-ever we can; just be wary and check the labels.
Good luck on your journey with your child—I wish your family health and success!
—Kimberly Linderman
QMy son was diagnosed with autism at the age of six and now at 12, he has
made many strides through biomedical interventions. He knows about his diag-nosis, but as my husband and I believe he was injured by vaccines and that led to the autism label, we have been won-dering whether we should tell him about the role the vaccines played or leave well enough alone. Do you have any thoughts about that?
AIf it were my child, I would tell him what caused his autism. But
right now, my child still cannot speak which I believe is a direct result of his vaccine injury. What I wouldn’t wish to hear my son ask me is what caused his autism because I think it’s important for him to know what happened to him and why. Someday, when he regains his voice, I hope to do just that.
With some of the controversy that surrounds vaccine injury, broaching this topic with anyone, including your son, deserves some well thought out answers. Since there are many re-sources about vaccines and how they affect one’s health, planning how you respond can be easy.
My first thought before you delve into this conversation is that you will need to ask yourself a few questions: Will your son will be able to under-stand that the vaccine injury played a major role in his development in-cluding his lack of development? Will sharing that information worry him or cause unnecessary fears? Will he wonder if anything is “wrong” with him now? And, finally, will speaking openly about this cause your son to question you/your judgment about having gotten the shot(s)?
If, while preparing to have this conversation, you anticipate that your son is able to handle all of the information and further ques-tions that may arise, then by all means, giving him this information is a good idea. It might help him better understand why things may have been difficult for him in the past. It may also give him insight
as to why you’ve worked so hard for his future.
Being truthful about the cause of our son’s autism can be beneficial not only at the moment he learns of the role vaccines played in his past, but can also help prepare him for situations he will face as an adult. Knowing the facts about vaccines and how they negatively affected him, may help him begin to build knowledge about his health and about specific medical choices he will later make when he is on his own and living independently.
Should this be the time that you sit down and have this important discussion with your child, and if you need to read more about vaccines, some helpful sites to bookmark and refer to are: http://drtenpenny.com/ and http://www.nvic.org/.
—Cathy Jameson
QSince before my child was diag-nosed with autism, I have often
found myself apologizing for his “bad” or “inappropriate” behaviors. I even apologize to people who shouldn’t need an apology: teachers, care providers, and other adults who are part of our community or family. Do you have sug-
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56 QUESTIONS & ANSWERS
gestions for handling these situations besides making these automatic but unwarranted apologies?
AAs a health care professional, I have seen a shift in the way the
industry treats people; as a parent, the educational system; as a con-sumer, the marketing and business industry; and as a member of soci-ety, our social norms and standards. In health care, some states are now passing laws allowing health care professionals to express sincere apologies, without admitting guilt, resulting in fewer law suits. It also allows the caring aspect back into health care. As individuals, we can get to the same state of mind.
As a parent with autism myself, I’m passionate about the positive aspects of autism. I found myself at one point going to that defen-sive other extreme, missing the real goals of teaching and reaching. Then, however, no longer feeling the need to apologize, or be defensive, I began to use the opportunity to teach others about autism. In time, I was finding myself able to give the judgmental observer or professional, family member, or friend, a busi-ness card explaining what autism is and how the myriad symptoms of the disorder can manifest. To me, this felt better and more appropri-ate than saying “I’m sorry” every time there was an issue. Talk About Curing Autism (TACA) has similar cards available on their website, and for situations involving safety, Den-nis Debbaudt has “Autism Risk and Safety” cards available on his website designed for law enforcement and first responder field use. (See Find Out More below.)
What I found, as my children with autism began to get older, is that by apologizing too often and too easily, not only is sincerity lost, but a heavy burden is placed on the kids, who may interpret my apology as an expression of shame. That’s a burden they don’t need to carry through life. Instead, I have to learn and teach them too.
The simple words “I am sorry” have as much—if not more—power than the other three words parents want to hear from their child with autism: “I love you.” It seems that many people have been conditioned to either say it without meaning it, or mean it without saying it. Learning and teaching these concepts is hard work for anyone, but once the neuro-logical aspects are understood by at least one advocate, an individual with autism can learn to better handle the emotional challenges and social situ-ations life presents.
—Ruth Snyder
FIND OUT MORE
TACA’s “My Child has Autism” cards
https://www.tacanow.org/store/My-
Child-Has-Autism-Cards-100/
Dennis Debbaudt’s Safety Cards
http://www.debbaudtlegacy.com/
autism_on_scene_response_cards.cfm
The simple words
“I am sorry”
have as much—
if not more—power
than the other three
words parents want
to hear from their
child with autism:
“I love you.”
SPECTRUM MUMMY 57
Why is it that the last person you want to see bumps into you at the worst possible time?B Y M A E F R O S T
There are certain people in life, who, should you happen to bump into them, you want
to do so only on a “best” day: just back from an exotic holiday with a great tan, or with a fabulous story to share.
Perhaps you once fell out with them with over something you don’t even remember now: Ex-boyfriends, or the girlfriends/wives of an Ex. Or perhaps that Alpha mum who used to belittle you every day at the school gates.
If I was ever to bump into such a person, it was going to be the day that I remembered at the last minute about putting out the rubbish and went bounding up the road with a bin-bag in each hand. With puffy-sleep-less-night-eyes, hair like stuff-ing from a burst mattress, a tee shirt with grease splats down the front, cellulite enhancing white leggings (a bad buying de-cision only used as PJs because I wouldn’t want to be seen dead in them—but who can afford to just throw these things away?). Oh, and let’s not forget the grub-by f lip f lops, and a “Spongebob Squarepants” plaster on my big toe because no others are allowed in the house. It’s definitely going to be this day, isn’t it?
Cue polite conversation in a gar-bled, high-pitched voice while tak-ing small steps backwards trying to
get away and making implausible excuses for looking like something in a circular email about dreadfully dressed WalMart shoppers. But she has me in her claws, delight is in her eyes and she has plenty to discuss. Finally, I find a good enough excuse to get away (trying to sashay but
stumbling while pulling tee down over big bum).
Once home, I catch sight in the mirror, noticing all the extra things like the mascara splodged-eyes, then cringe while remembering all the nonsense I said while trying to get away. All the excruciating little de-tails replay in my mind. Then, here came the hysterical laughter at the ridiculous bad luck of it, and per-haps a little self-indulgent sobbing at what life has come to.
I realize all parents have these mo-ments, but seemingly you get rather more of them over a much longer term when you’re a spectrum mummy.
In the old days, such an event might have spurred me towards a gym, a healthier eating plan, and getting my life together. But now, if I pack in 10 hours a week at the gym, like an overstuffed suitcase, something else will pop out—some-thing vital, definitely more impor-
tant than me trying to look like Heidi Klum in a bikini. And we don’t really have anything left in our house that isn’t healthy, so there’s nothing to ceremonially chuck out and ban. I could try starvation so I can fit in more of my clothes, but that will make me grumpy—and since I am the cheerleader in this particu-lar household, that wouldn’t do at all.
As for a backpacking tr ip through the Amazon, or a month on a whale-watching project, or something else suitably wind-swept and interesting: To be honest, my life never has a dull moment. I could really use two months in a dark room with a comfy bed and room service, not seeing anything interesting at all—now that would make a nice change.
Also, I have all these bills to pay for things my kid needs that should just happen but don’t because all the people who are supposed to be meeting his needs are instead devoting their attention to creating paper trails that make it LOOK like they are meeting his needs. So I’m not spending a penny on anything that isn’t vital with a capital “V”.
I have no words of wisdom and I’m not suggesting you ever go out looking like I recently did. But if anything even remotely similar hap-pens to you, just know you are not alone. And keep your fingers crossed we don’t end up on one of those email circulars...
Close Encounters
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MAE FROST...MMAAEE FFRROSOSTT......…is mom to two fabulous
children, one of whom has
autism. She has dim and
distant memories of wearing a
suit, working in management
and having things like coffee
and lunch breaks. These days,
she mostly spends her time running in pursuit,
and clearing up. But in between, she writes, runs a
small online store importing clothing for children
with sensory processing disorders, and is a trustee
for a charity.
IT’S SAID THAT ONAN AVERAGE DAY,
A PERSON CAN SPEAK16,000 WORDS.
- an autism mom
Introducing Give A Voice, a new program from the National Autism Association that provides communication devices to individuals with autism who are non-verbal or minimally verbal, and whose communication challenges put them at increased risk of injury or harm.
I’D GIVE ANYTHING IFMY CHILD COULD SPEAK
JUST ONE.
TO DONATE OR LEARN MORE, VISIT NATIONALAUTISM.ORG.