Going Green on a Budget | Latest Research | Nutrition News Go

OC T- NOV 2013
I S S UE 52
Providing Hope and Help for Autism Families
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AUTISM FILE 1
POLLY TOMMEY
Editor-in-Chief
Polly Tommey is one of the
worlds 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
Europes Sky Television, and also
Autism File magazine, where she
serves as Editor-in-Chief. Her
book, Autism: A Practical Guide
to Improving
Your Childs
Quality of Life
(co-authored
with Jonathan
Tommey) is
available via
Amazon.com.
POLLYS PIECE
A Tale of Two Teens
Recently completed lming documents the
struggles families face in trying to get medical
treatments for their children with autism
B Y P OL LY T OMME Y
T
he past months have kept me frantically busy with lming. Two years ago, we
started lming 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 horric self-
injurious episodes. He had a swollen head from constant banginghe 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 nd 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 ew 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. Im not going
to go into detail here as shortly their stories will be available for everyone to see.
It has been a long and difcult journey for both familiesbut our lming came
to an end last week following two years of horrendous struggle to get the disease
under control (it isnt curable but with correct treatment can be managed). But the
struggle didnt 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 nd the money to y 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 arent 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 rst be healed? Why are people with autism constantly being given totally inap-
propriate psychotropic drugs? One of our recent lmings in the USA took us to a ve
year old girl on heavy medication for disorders and conditions she didnt 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 freewe just need an email address to get these invaluable
resources in their hands.
Stay tuned as well 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 cant make it to Austin. _
b
It is beyond belief that
both British families had
to nd the money to y
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
a
2 FEATURED CONTRIBUTORS
Editor-in-Chief
Polly Tommey polly@autismmediachannel.com
Executive Editor
Rita Shrefer rshreffler@autismfile.com
Art Director
Mary Francis McGavic production@autismfile.com
Editorial Assistant
Mollie Shrefer merilynn.shrefer@burrellcenter.com
Advertising
Director of Advertising and Marketing
Kimberly Linderman ''..1:.m+.+.|.m|':.m ``a`a
Advertising Account Executive
Aimee Allenback +.m::....':mm|.m `-'+'-+a
Editorial Advisory Board
Mary 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, CNC
Julie Matthews is a Certifed Nutrition Consultant
specializing in autism, and author of Nourishing
Hope for Autism and Cooking to Heal.
James A. Moody
Jim 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., CPA
Shannon is an attorney who has been featured as a tax,
fnance and legal expert in numerous publications. She is
co-founder of Colored My Mind, an autism outreach nonproft.
Stephen Shore, EdD
Stephen Shore is an assistant professor at the Ammon
School of Education at Adelphi University, teaching
special education with an emphasis on autism.
Chantal Sicile-Kira
Chantal Sicile-Kira is an award-winning author, speaker,
and leader in the feld 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 identifcation 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 Uram
Eric Uram is Executive Director at SafeMinds, a
non-proft dedicated to helping our children by
stopping the environmental exposures triggering the
epidemic of autism and its related problems.
Anju Usman, MD
Anju 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-proft which supports
research, education and biomedical therapies for families in need.
Paul Whiteley, PhD
Paul Whiteley has researched autism spectrum and related
..1.|.. |. `' ,:+. '. '' ,...|.:|....-+..:.
blogspot.com) focuses on discussing various facets of autism and
related research.
Andrew Wakefeld, MB, BS, FRCS, FRCPath
Andrew Wakefeld is an academic gastroenterologist who has
,.''.':1 .:. `` ....+' ..:.|.|. +.|..':, '' .'+,|:., +.1
invited scientifc commentaries.
The content of the letters/articles and advertisements in Autism
File refect 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 Cosmadopoulos
Sophia 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 Kirby
David Kirby, a regular contributor to the Hufngton 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 nalist 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 Rogers
Pure Vision Arts studio and Expressive Art Programs 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, BCaBA
Alix 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 at u r e s
` A PURE VISION By Sophia Cosmadopoulos and Pamela Rogers . . . . . . . . . . 24
Creativity translates into learning life skills in NYCs unique studio,
Pure Vision Arts.
` DO IT YOURSELF! By Alix Strickland . . . . . . . . . . . . . . . . . . . . . . 28
At-home autism therapies are eco-friendly and wont bust your budget.
` TIME FOR A CHANGE By Christina Adams . . . . . . . . . . . . . . . . . . . . 32
Know the out-of-home placement optionseven if you believe
youll never need them.
` REPEATING HISTORY By David Kirby . . . . . . . . . . . . . . . . . . . . . . 38
Investigating Australias history of Pink Disease highlights
its many similarities to autism.
d e pa r t me 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
` POLLYS 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 dont have to be
expensive to be efective.
28
A guide for accessing residential options
for your ASD child
32
Mercury has long been known as a
powerful toxin, causing harm to both
past and present generations. 38
Adults with autism nd 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
Minds Eye
Art across the Spectrum
F I S H ON MY HE A D ACRY L I C B Y CHR I S T I A N E A R LY
C
hristian Earlys rst 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
ne-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 ngers, 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 Auti sm: Shifting 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 Mind
Going 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 rst
digital issue, Im excited about this
new way of accessing the articlesand
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!
Id been hoping you would come
up with a digital version of this
incredible resourceIm usually at
my computer anyway and can just
dip in and out of the pieces at my
own speed. The fact that its free is
such a nice bonus too!
Elizabeth
Revolutionary Road
As a big fan of the Thinking Moms
Revolutionas well as the mother of
a vaccine-injured 12-year-old girlI
was happy to see the interview Polly
Tommey did with Lisa Goes. It really
is an outrage that so many of our
kids dont 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
Reflections
What happened to Alex Spourdalakis
is heart-wrenching and painful to even
think about. Thanks to Dr. Wakeeld
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 justied, I fear were
going to see more of these cases in the
future if theres not a huge change in
the way society perceives autism. I dont
think most people realize that theres
a dire lack of medical treatments and
services for this population.
John
Navigating the System
I 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 staf. After reading
through Cathys piece, I felt I
was ready to take it onand
its gone surprisingly well.
Thanks so much, Cathy and
Autism File!
Shelley
Risk Management
Thank you so much for the incredible
article by Dr. Usman on preventing
autism in future generations. This
couldnt 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. Ive
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 theyve
been very receptive to it.
Karen
I only wish Id had this article 22
years ago when my husband and
I got married and began thinking
about starting a family. We had our
rst 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 didnt 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 Im sharing this
article with all of them.
Faye
Must-have resource
Wow! I didnt think Autism File could
top itself, but this issue was so full of
amazing articles that you denitely did!
Autism File is one of the best resources
for families out there. I cant get enough
of the articles about the medical care
(and lack of) in our community and the
ght 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 its FREE? Autism File is, without
question, THE BEST!
Shannon
Mind
t
d
s
h
Gluten-Free for Fall | Latest Research | Nutrition News

AUG- S E P 2013
I S S UE 51
EDUCATI N
ISSUE 2013
TO
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Sensory
Strategies
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Get the most from
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How technology
is transforming
ASD education
Prevention
Strategies
Avoiding ASD triggers
Hope and Help for Autism Families
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we want to hear from you! Email your letters and photographs to us at the
Autism File, rshreff ler@autismfile.com.Letters may be edited for length, clarity, and style.
Your correspondence is important to us and we value your input; however were 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
afected 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
Aspergers Syndrome
One of the biggest
challenges for
people diagnosed
with autism is the
appropriate
expression of
afection, 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 diferent types of
afection 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 ofers 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 info@autismle.com
I
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Carefully vetted, theres a list that cir-
culates asking to conrm that Jane or
Mary lives in town and isnt trying to
sneak into this exclusive group. If
youre pregnant, you might slide in
but youd better fork over an ultra-
sound to prove youre on your way to
Mommy-hood.
As a veteran
autism Mommy
oldest is 18 and my
baby is 13I 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 fnally 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 fve year old for Christmas. She already has everything.
What Chinese restaurants deliver?
I need a recipe for banana bread. Anyone?
Were going to DC on vacation. Where should we stay?
In the last issue of Autism File, I
wrote about the old fashioned Cofee
Klatchwomen of my moms gener-
ation sitting around the kitchen table
kibitzing about daily life over cofee
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 theres a cookbook collecting dust SOMEWHERE in your house. Find the
oven manual frstits 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 Im not sure they
actually go to the polls and vote. After
all, what if theres a sale on salads with
a side of manicures that Tuesday?
KIM STAGLIANO... KI KIMMSSTTAG AG TTTT LLIA IANNO..
...Im Kim Stagliano, wife,
mom, writer, tired! My
husband and I have three
gorgeous girlswho have
autism. Kind of impossible,
considering autism afects
boys 4:1 over girls. Mark and I
have learned that impossible is often inescap-
able though. My book, All I Can Handle: Im No
Mother Teresa, is a humorous look at a life that
has been anything but ordinary or easyand
yet is full of laughter, joy and love. I promise, you
wont need a Prozac to read it. Im Managing
Editor of www.ageofautism.com, the nations
frst daily web newspaper about the autism
epidemic. I also write for The Hufngton Post and
the MSNBC TodayMoms 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 TAGL I A NO
Art from the Heart
8 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 Mothers Day, camp day, and
major holiday my girls come home
with artit 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, Id need a
storage facility. Imagine that episode of
Storage Wars. Youve successfully bid
on 407 sheets of scribble, 32 crooked
ceramic cups, 123 cofee lter owers,
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 dont live in their
world. My kids dont live in their
kids world. But Ive made a
point of being a public figure
and people know me in town.
Every so often Ill get a PM from a
member, I have a question about
my sons health, his development,
his next ped appointmentcan you
help me?
I always answerYES. I will help
you, in the hope that I can help them
paint a diferent picture for their child.
Trendy name or not._
y
e
k
m
e
d
rem
little
long
can
o
w
m
m
his
h l
10 LIVING WITH AUTISM
I
ll never forget the
day that my sons
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
couldnt disagree with
her more. I wondered if
she would ask the par-
ents of neuro-typical
kids to also take away
items of interestfoot-
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 theres an
interest in keys from diferent car manu-
facturers. (This was my youngest childs
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. Thats not to say
that you cant 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 peerswho knows, he
may even end up surpassing them in
some areas!
EXPANDING THE OPTIONS
Its 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
Blues Clues on the planets that he would
watch over and over again. I took him to
The Skys the Limit
Follow your childs lead to transform
restricted interests into endless possibilities
B Y MA R I A MI L I K
ONE THING LEADS TO ANOTHER With a little guidance, your childs limited interests can quickly expand
in myriad directions.
MARIA S. MILIK... MA MARI RIAA 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 fxations are written by Patrick Schwarz and
Paula Kluth. Pedros 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 childs teacher. I
only wish they were available back when my child was in frst grade!
the library to look through simple board
books on the topic. We also went to our
citys 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 nations 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
diferent 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 FOCUS
Realizing 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 thats the
one he settled on.
At rst, he learned about weather
patterns, then, diferent terrains, ani-
mals that lived anywhere from deserts
to the wetlands, the continents and
nally 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 fth grade) is still interested
in anything related to space (although
it isnt 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 WORK
Ive known quite a few children on the
spectrum who seemingly dont have
anything that interests them. If you look
closer, youll see that they do, indeed,
have strong interestsbut dont 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 youre getting no response from
your child, move on to a diferent item
until you see a spark of interest. If hes
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 nd a video or tutorial on the topic
online. Dont 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 fnd
somethinganythingthat 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. Id give
them to him one at a time and wait to
see which things piqued his curiosity.
After a few days, if he didnt show an
interest, I would move that item into
storage and pull out something else
for him to explore.
Its 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 childs
level and show him how to play ap-
propriately with the toy or item. Most
of our children need guidance at frst.
Although its fne for them to explore
and be creative with toys, its 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 youll be building
trust and developing a great relationship
with your child which is critical for social
and emotional well-being.
LIVING WITH AUTISM 11
b
If you look closer,
youll see that they do,
indeed, have strong
interestsbut dont
have the tools to really
delve into them.
a
12 WAKEFIELD
A
nother dayanother death. Ac-
tually two to be precise: Mari-
lyn Edge of Scottsdale, Arizona
attempts suicide by crashing her pro-
pane-lled 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. Specically, I was
reecting on Oprahs acclaimed role as
Sethe in the 1998 movie Beloved, based
upon Toni Morrisons 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 Schoolteachers
nephews. When Sethe complains to
Mrs. Garner, Schoolteachers sister-
in-law, the latter confronts him with
the young mens 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. Schoolteachers nephews hold her
down, rape, and humiliate her while
their uncle stands by, encouraging
them and invoking the Lords justice
upon Sethe.
Sethe runs away from Sweet Home
and eventually reaches the home of her
mother-in-law, Baby Sugg. However,
Sethes 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 justies her deci-
sion without apology, claiming that
her children would be better of dead
than enslaved.
Set he i s haunted t hroughout
the movie by a poltergeist named
Belovedthe ghost of her murdered
daughter. Nonetheless, Sethe remains
freehaunted, 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 chattelcomes from her white
master and his disgusting nephews.
Worse still, it comes from the God
fearing American society of the day.
Sethes desperate act, committed in
the face of her familys 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 sufer
her fate.
Meanwhile, reporter Rosemary
Parker of Michigans 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 dont
remember it ever being asked fol-
lowing the release of Beloved. The
movie brought more pressing issues
to the forefront. _
ANDREW WAKEFIELD, MB, BS... AAND NDRREEWW WWAA WWWW KE
...is an academic gastroenterologist.
He received his medical degree
from St. Marys Hospital Medical
School (part of the University of
London) in 1981. He pursued a
career in gastrointestinal surgery
with a particular interest in
infammatory bowel disease. He qualifed 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 scientifc articles, book chapters, and invited
scientifc commentaries. In the pursuit of possible
links between childhood vaccines, intestinal
infammation, and neurological injury in children,
Dr. Wakefeld 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 Home
Reections on misplaced perceptions
of what constitutes a hate crime
B Y A NDR E W WA K E F I E L D
B
I
G
S
T
O
C
K
WAKEFIELD 13
continued...
Autism: A Game-Changer
A Great Documentary Can Change Peoples 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.
Filmunambiguous and universally accessibleis 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
autisma 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 arent always clear,
certain foods are emerging as
frequent contributors to aggressive
behaviors
B Y J U L I E MAT T HE WS
A
ggression is a difcultand
somet i mes devast at i ng
symptom t hat can occur
in children for a variety of reasons,
some known and some unknown.
Some of these are nature and others
are nurture.
Its a difcult 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 afects the entire family, with
parents citing it as one of the most
stressful aspects of their day-to-day
lives. Because of the safety risksto
the individual with the aggressive
behaviors and those around him or
herits very important to gain an
understanding of the causes so they
can be efectively 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
ALLERGENS
There 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 identied 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 al so
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 (specic 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-f ree and casei n-f ree
(dairy-free) diet is often a great place
to start with dietary changes, as
JULIE MATTHEWS... JU JULLIIEE MMAATT TTHE HEWWS
is a Certifed 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
Julies website at www.nourishinghope.com.
_
14 NUTRITION FRONT
Autism and
Aggression
S
.

B
r
a
s
w
e
l
l
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.
S
B
S
B
l
l
l
l
there are so many ways these foods
can negatively afect children.
PHENOLS AND SALICYLATES
In my one-on-one nutrition practice
Ive found phenols, salicylates and
amines are the foods that are, in my
experience, by far the greatest causes
of aggression.
Arti fici al additives (most are
phenols) are compounds that can
trigger irritability, sleeping prob-
lems, hyperactivity and aggression.
Food additives are a well-known
cause of aggressionDr. 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 articial 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 signi-
cant aggression, hyperactivity,
and many other symptoms.
One of my cl i ent s , a
10-year-old boy, had daily
aggression toward his family
and therapists. It would hap-
pen dozens of times per day,
seemi ngly 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 disappearedit went
NUTRITION FRONT 15
b
When aggression is
present in an individual,
it afects the entire
family, with parents
citing it as one of the
most stressful aspects of
their day-to-day lives.
a
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 GLUTAMATES
Amines are a diferent 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 i n fer-
mented foods including sauerkraut
and yogurt, salami, smoked meats
and fish, bacon, canned fish, and
brot hs. Some t i mes I f i nd i t 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 dont
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-
ones life can occur.
FURTHER RESOURCES
For 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.org
` www.FedUp.com.au
` www.Allergy.net.au _
Product Spotlight
Ipiit, 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.
Its a great GF/CF app, that sorts through the label and lets you know if there are any
ingredients and food additives you are trying to avoid. When you are tired or forgot
your glasses, its 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).
Its great if youre looking for an app that includes GF/CF as well as GMO-free and
food additive-free choices. And its simple to use: point your phone at the label
and the app does the rest.
B
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G
S
T
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C
K
B
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G
S
T
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K
From the Bookshelf
People often ask me my favorite books, particularly on the nutri-
tion and autism/ADHD subject. I have hundreds of books that overfow
three bookshelves in my ofce, most of which Ive 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 frst of the series with the Autism File.
Practical Paleo by Diane Sanflippo. 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, its
Paleo so its 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 dont need a full grain-free diet, most of us can beneft by getting
more vegetables and less grains. Normally, so many snacks and recipes center
around refned carbohydrates: breads, sandwiches, mufns, 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 bookyou wont regret it!
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Each edition of Autism File covers a diverse range
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Reach a highly targeted and receptive audience, who are deeply engaged
with the content because it covers issues that uniquely matter to them.
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always recommend it to
friends and fellow support
group members. It truly
is a springboard for
recovery. I love that!
Sylvia, Granite Bay, CA
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sugar
18 SENSORY SMARTS
W
hether kids, teens or adults
on the autism spectrum
are serious artists or sim-
ply having fun with crafts, its 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 chefs 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 its 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 theyre doing,
theyre 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 doesnt 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 persons 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 Alexs
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
Usborness I Can Draw Animals and
Ed Emberleys 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... LI LIND NDSE SEYY BBII YY 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 Art
10 Ways to Help Artists Handle Sensory Issues
B Y L I NDS E Y B I E L , OT R / L
FIND OUT MORE
`Stand-up desk www.Worthingtondirect.com
`Classroom light flters
www.Educationalinsights.com
` Infatable 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 fnd most other items mentioned on Amazon
and many on the sensorysmarts.com web site.
Meet
Edward Tucker
Creative young man with autism
gains work experience in a caring
environment...
T
wenty-seven-year-old Edward
Tucker works at Pollys Place,
The Autism Trusts agship 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 Pl a c e
websi te, sai d
Edward. He uses
creative angles and works with natural
sunlight to capture some incredible
images that show Pollys 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, hes
also started collecting and displaying
the pictures he takes from the bridge
down the street from the shop. Hes
memorized the train schedules and
uses the bridge as a vantage point to
collect images of the trains that pass
by below. Recently, hes 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.
Hes part of the Pollys Place team and
like family to us, said Mo Wilson,
the manager of Pollys Place.
The most i mportant thi ng to
Edward is that The Autism Trust and
Pollys Place provide him with a job
that he enjoys in a supportive and
caring environment.
Visit the online store to see Edwards
photographs www.theautismtrust.com. _
GIVE AUTISM A CHANCE 19
_PICTURE PERFECTSkills with lighting and
angles allow Edward to provide the best pos-
sible showcasing of products.
_PART OF THE TEAMEdwards attention to detail and sunny disposi-
tion make him an integral member of the Pollys Place team.
We just love having
him around. Hes part
of the Pollys Place team
and like family to us...
One persons noise is anothers music
B Y S A M RU 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
blowersyou 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 Im up close to
a really loud or sudden sound, my
adrenaline goes of. 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-
et 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 of, making
it difcult to sustain reading music.
Its not that I dont 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.
Ive noticed that when I read, its
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 its 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 trafc from
outside the symphony hall into it,
exposing the audience to sounds they
would normally tune out as not
music. About trafc, he said, If you
listen to Beethoven or Mozart, they
are always the same. But, traffic is
always diferent.
The way I see it, we live within a
symphonic shbowl of mechanistic
auditory vibrations that actually have
musical pitchif only you tune your
ears to hear the music of it. _
20 THE WAY I SEE IT
SAM ETHAN RUBIN... SA SAMMEETH THAN AN RU RUBI
is a 20-year-old actor,
flmmaker, 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 flm. 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 fnding 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
E
D

R
U
B
I
N
Wired Up For Sound
THERAPY, BEHAVIOR, AND LIFE SKILLS 21
H
ow often do you hear the
words, I already washed my
hands! or I dont want to
take a shower! Many families who
have a child, adolescent, or young
adult on the autism spectrum often
nd themselves frustrated when
it comes to cleanliness issues.
Whether you are trying to
get your child to wash
his hands, change
hi s cl ot he s, or
merely wipe his
face, hygiene is
an i mpor t ant
part of ever y-
body s da i l y
routine.
H y g i e n e
challenges tend to
become more dif-
cult 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 ghting every day. Or is it?
Lets 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 youmelting down.
` Remember: A little
patience goes a long
way. I know that
some days your
cup is overflowing
with patience and
on ot her s you
are at your wits
end; this is totally
understandable. On
those days when you
are ready to crawl
right back i nto 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 NNI F E R L I NGL E
JENNIFER LINGLE, M.ED. ... JJEENN NNIF IFEERR LI LING NGLE
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 afected by autism throughout the United States and continues to
provide intensive parent support and training to families. She holds her Masters
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 dont 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 childs 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 rm, 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
teet h, gett i ng dressed, cleani ng
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, dont
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 childs
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 i onal but essent i al ,
good hygiene should be a part of
your childs schedule every day. If
your child uses a visual schedule,
start placing hygiene items in his
routine throughout the day (if he
doesnt 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 childs sensory needs.
I have yet to meet a child on the
autism spectrum who does not have
challenges with sensory overwhelm
or under whel m. Its essenti al 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 childs
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 childs 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
hi m f rom t he st ressf ul part s of
activities.
You can also try playing your
childs 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 nished, 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 doesnt 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 childs 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 dene 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 place
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for kids, TradeWinds has all you need for the perfect beach getaway.
s All rooms are non-smoking with refrigerator and microwave
s Newly remodeled rooms and suites at Island Grand and Guy Harvey Outpost
s Designated as an Autism-Friendly business
s Host hotel for National Autism Associations Annual Conference
JustLetGo.com/autismfriendly | 800.808.9834 | Floridas West Coast
24 NAA CONFERENCE
A unique art studio in New York City provides vocational
and social opportunities for adults with autism
B Y PA M ROGE R S A ND S OP HI A COS MA DOP OL OUS
A
utism 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 specic interests and talents. While much of
the funding for autism tackles early intervention for children
and general research, there is a lack of specic funding for
these adults. The Shield Institute, a non-prot 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 VOID
Pure Vision Arts (PVA) is Manhattans rst and only
art studio and gallery space for adults with autism and
other developmental disabilities. The model is based on
Oakland, Californias Creative Growth program which
opened in 1974 as the nations rst independent visual
art center for people with neurodevelopmental condi-
tions. The creation of PVA in New York City quickly
24 NAA C A ONFERENCE
A Pure Vision
` THE SMILE SAYS IT ALLOscar Azmitia painting in the art studio.
ART AND CREATIVITY 25
lled 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 staf provides studio
space, high quality art materials, support, guidance
and opportunities for exhibiting and selling the artists
work. The Director, Dr. Pamala Rogers, explains, PVAs
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 Citys Chelsea
gallery district, PVA is a comfortable 2,000 square foot
sunny loft space. Large-scale cardboard trafc lights and
parking meters line the oors, art hangs oor-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-ve 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 PVAs most prolifc 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 Friendlys 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 fxture at the
studio. Over the years, she has created a
vast collection of paintings that refect
her own personal experiences.
Infuenced by her childhood memories
of growing up on Long Island, Susans
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
fathers 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, Susans
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 Hosseinis The Art of Autism:
Shifting Perceptions. Susans landscape
paintings were included in Jill Mullins
frst 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 trafc 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
Chases work will be featured.
INDIVIDUALITY IS KEY(Left) Susan Browns 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 copyi ng 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 VOCATIONS
PVA al so br i ngs vi s-
ibility to the artists and
educates the public on
t he i mport ant role of
art in the autism com-
munity. Collaborating
with other organizations
i s ext r emel y i mpor-
tant in achieving these
goals. New York Citys
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 di scuss t hei r 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
t hey used at t he mu-
seum and on eld trips
in the community. The
final workshop culmi-
nated in an exhibition in
a Whitney studio as well
as a nal 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 A SUPPORTIVE ATMOSPHEREPVA provides opportunities for both creative and social growth.
a OUTSIDE THE BOX Cardboard parking meters made by
Chase Ferguson.
future art exhibitions. It is each artists 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 fty percent commission; the other fty
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
b
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.
a
POSSIBILITIES ABOUND (Left) Oscar Azmitias enamel paintings
on New York City MetroCards (Above) Susan Browns 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 CK L A ND
T
he numbe r of
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 ofer
appropr i ate suppor t
and help to fami l ies
raising these children.
Even with new profes-
sionals graduating in
related elds each year,
the demand for autism
services far outweighs
the amount of available
autism services.
PARENTS AS THERAPISTS
As 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 tricksac-
tivities that are fun and challenging
enough to increase your childs func-
tional communication.
Given proper coaching, parents
can be their childrens best thera-
pists. There are many benefits to
working directly with your child.
Worki ng toget her to accompl i sh
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 childs home program
is budget-friendly and
eco-friendly.
CREATE THE
ENVIRONMENT
Ma ny peopl e wi t h
Aut i s m S p e c t r u m
Disorders have sensory
integration difculties
making the processing
of ever yday sensor y
i nfor mat ion such as
s ounds, s i ght s and
smells a challenge.
Before sitting down
t o work wi t h your
child, make sure that
your space i s cl ean
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-KIT
You have a wealth of available home
program materials sitting around
your house at this very moment. Re-
using materials is eco-friendly and
afordable. 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!
b
Re-using materials
is eco-friendly and
afordable. With
minimal resources, you
can create some pretty
fabulous learning tools.
a
28 DIY AUTISM THERAPY
B
I
G
S
T
O
C
K
ISTOCK
29 DIY AUTISM THERAPY 29
A visual schedule
with a twist.
Materials needed:
` Straws
` Laminating machine
` Laminating sheets
` Plastic cup
` Tape
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
childs 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:
` Clothespins
` Green construction paper
` Markers
` Laminating machine
` Laminating sheets
` Scissors
` Velcro
` Photos of favorite
activities and foods
Draw a di nosaur 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 wit h
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 childs 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 childs stress by oc-
cupying him with a fun and engaging
activity, increases his ne motor skills
and increases his focus and ability to
concentrate. You will use each of your
home-made educational materials to
increase your childs 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 diferent ways to
help increase your childs 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 diferent ways depend-
ing on your childs skill level. For our
purposes here, a Beginning Learner
is a child who is not yet uently 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.
a 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 BOXES
Materials 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 fnd 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, identifcation by characteristics.
FARM STORY BASKET
Materials 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 childs 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 STONES
Materials needed:
` Salt dough
` Draw string sachet / bag
` Paper, computer, printer
` Images (your choice)
` Laminating sheets and
laminator
Salt dough recipe:
` cup salt
` cup water
` 1 cup GF flour
Directions: mix the 1 cup of four and 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 four. Make small round and somewhat
fattened 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 diferent levels of difculty. Your activity must
be adapted to your childs 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 childs
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 CHR I S T I NA A DA MS , MFA
I
s 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, its 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, heres 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 werent 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, todays disabled person
is assigned a government caseworker and the right to help
determine his or her own care, so theyre 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 Aspergers 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. Thats why
investigating placement or housing for your ASD child is
smart even when you dont think youll need itbut 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 ofer. While placement is emotionally and practically
challenging, its governed by similar but diferent rules for
adults with disabilities. Your childs developmental agency
caseworker can guide you through them.
HOUSING FOR CHILDREN
Some children are very difcult 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 cant
use the toilet or communicate, or have seizures and other
32 EDUCATION SPECIAL 32 EDUCATIONSPECIAL
Time for
a Change
Its 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
difculties 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 diferent. They get angry and depressed.
Suicide language comes up: Im gonna kill myself. It re-
ally means, I have hit a wall and dont know what to do,
so I use societys 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 nd this a wrenching
decision because they feel they are
abandoning the child, says Donnelly.
But thats 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 SYSTEM
When school-age children need more
protection and supervi sion than
a family can manage, the parents
should contact their state develop-
mental agency. Before a family is ofered full-on residential
placement, many in-home options are ofered. 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 staf can handle the personal
care duties, protect parents from injury and take the
child on community outings. However, if parents accept
in-home staf, they must hire and train their own people
or use an approved agency. Both involve scheduling, su-
pervising, letting staf in and hosting them in the home.
The daily paperwork and loss of privacy are draining,
even with good employees. Other realities include staf
turnover, absenteeism, poor agency management, or hav-
ing a bad employee steal from you or le 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 impededand in case of wrong-doing by the
school, districts sometimes ofer 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
rst-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 decits or
behaviors (which also determine the
type of group home or care he needs),
but its actually surprising how eas-
ily many kids with ASD meet these
criteria when the familys stresses
and childs 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 childs
education is served by that school
district. And when a child is placed,
a parental share of costs is determined based on the
familys income and special needs.
EXPLORING THE OPTIONS
Having spent time with teens on the spectrum, plus
typical teen legal plaintifs whod sufered in abusive
group homes and bad foster care, Ive visited a few group
homes and psychiatric hospitals. Walking into one for
the rst 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 staf and meet the kids. I was very moved to see
the director of two homes crying on my rst visit to her
teen group home. A boy shed 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 didnt track mud in, and many hugs
and snacks when they arrived from school. I also visited
AGES & STAGES 33
b
everyone gets to live
a reasonable, productive
life and the child gets
the opportunity to
develop skills, live within
boundaries and interact.
a
a grandma-run home where her family members pitched
in to raise ve seriously impaired male teens, showering
them with church hymns, southern cooking and constant
hugs. These friendly homes reminded me that an ASD
child probably wont care if the dcor is dated or the mail
isnt sorted every dayand 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 ofer special nursing
facilities if needed.
Often, parents cant 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: its just that people dont often
discuss it.
The Ideal Group Home A well-organized foor
plan supports easy circulation and staf 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 childs psychiatrist and develop-
mental caseworker.
ADULT HOUSING OPTIONS
Many 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 nd themselves without suf-
ficient income, space or health later in life. In Orange
County, California, a county elder care specialist told me
shes 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 monthand 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 signicant reason,
although individual out-of-home placements may have
certain rules for residents.
If you cant keep your child at home or treat him to his
normal lifestyle without services, he might have to learn
the hard way theres 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 dont wish to live within your rules, they
would need to accept services or nd 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 gure 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 nancial, 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 ofered a trial overnight
or week-long visit to see if the t is right. A patchwork of
funding applies, so cooperation with state developmental
and housing agencies is required.
Theres 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 longsign your child up as soon as hes 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
Its 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 theres a place for their kids if its 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.
3Ask 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.
1Observe how workers interact with residents. Do
they treat them warmly, know their likes and dis-
likes? Or do they speak disparagingly of them?
4Ask when staff is allowed to leave the facility or be
alone with residents, and under what circumstances.
2Check 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 ofer minimum wage to care-
takers of disabled or elderly people, and an autistic person
can qualify for a signicant amount per month in California
in caregiver funds (In-Home Supportive Services).
INVISIBLE SUPPORTS
One 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
Pacic Ocean. Despite not qualifying for developmental
agency dollars (due to the past experience with larger in-
stitutional settings, the local agency wont 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 staf,
activity director and outings, and an entitlement coordina-
tor to maximize residents benets.
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 doesnt 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 re code. Dating
is accepted, although sex is only al-
lowed of-campus according to their
house rules. Although several
residents are on birth control as its
their personal right, getting married
or having children means residents
must leave the single life and nd
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 Glennwoods 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 dont 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
F
orever and a day may sound clich, but thats how
long the journey from New York to Australia seemed
to take. After a six-hour ight 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 ight 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 rst 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 History
Investigating Pink Disease Down Under Highlights its
Many Similarities to Autism
B Y DAV I D K I R B Y
_TOXIC TIMESMercury-containing products such as Calomel and
teething powders, commonly used in the frst half of the 20th century,
are now known to have seriously injured countless young children.
b
I was always screaming,
crying continuouslyI had
a red rash. They didnt
know what was wrong.
a
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 lm. SafeMinds commissioned the documentary,
which was produced by lm 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 MERCURYS
TORMENT
There 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 lm. 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 oppy doll. The skin on the soles
of my feet and palms of my hands became bright pink and
began to peel of. 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. Id
be sitting, and rock-
i ng backwards and
forwards, she recalls
i n 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
bYOUNG VICTIMSEarly descriptions of Pink Disease noted that
the children afected had faces that refected 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! Dont you look away!
Everywhere we travelled, we heard similar stories.
Elizabeth Meyers was interviewed in downtown Syd-
ney. I couldnt stand to be touched anywhere on my
body, and screamed and cried day and night, she says in
the lm. My mother stayed home, of course, to look after
me. I was very irritable, crying, clammy. Id 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 sufered
severe health impacts of mercury
poisoning since he was a baby. I
was always screaming, crying con-
tinuously, he recalls on lm. I had
a red rash. They didnt 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 afects
the cilia in the bronchi, so the lungs cant work properly.
One awful attribute of Pink Disease that difers 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,
Shes so ill, shell never make school age.
MERCURY, AUTISM AND ACRODYNIA
David 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 nds its way to the brain, David
explains on film. In humans, it can get through the
blood-brain barrier. But then thats not the end of the
story because the mercurys 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
st, the light sensitivity, the sleep
disruption. I was speechless after
reading this book.
He is convinced that the research
is very clear: theres 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 Thieles 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 diferentiates these children from
the general population, to which they were compared, is
b
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.
a
aSIGNS & SYMPTOMSMany 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 theres a higher inci-
dence of autism and ADHD
and all those behavioral prob-
lems in families of Pink Dis-
ease people. There is a de-
nite connection, she says. I
relate fully to autistic people.
I feel that theyre so much like
me. Ive 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 TRUTHS
As the lm points out, chil-
dren today are exposed to
mercur y i n many ways:
food, air, water and vac-
cines, to name a few. Such
cumul ative 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. Janices son and
grandson, for example, both
have Aspergers. 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 Aspergers.
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 hed 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-
pergers, until now, he says.
But Ive had mercury in my
vaccinations. And Ive got a
grandmother whos survived
an awful lot of mercury, so
its 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. Weve known
how toxic it is for millennia,
but it seems like we keep
having to suffer catastro-
phes to remind ourselves of
mercurys toxicity.
Heather Thiele is equally
perplexed, and saddened,
that children around the
world are still being need-
lessly exposed to mercury,
especi al ly thi merosal, 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 poi soned, and
there was no apology, she
laments near the close of
the lm. We have sufered
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 countrys 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
its like, she says plaintively. Dont ever
let this happen to another generation. _
Symptoms and Similari ti es bet ween Acrodynia and Auti sm
Pink Di sease (Acrodynia) Symp-
toms from LAcrodyni e by A.W.
Cameron, 1931 and PD survivor
Heather Thiele
Auti sm Symptoms from
Auti sm: A Novel form of
Mercur y Poi soning,
Bernard, et. al. 2001
Mood alterations describes as a loss
of joyfulness. If someone comes close
to them they move away or cry.
Social defcits, social withdrawal, aver-
sion to touch, depression,
fat affect.
The children may stop playing and
laughing. Their faces refect sadness.
Grimacing, staring spells,
aloofness, depression, prefer
to be alone.
In most children there is irritability. The
children stop talking, some cry or are
cranky.
rritability, aggression, temper-tan-
trums. Loss of speech,
agitation, unprovoked crying.
ntelligence may remain intact, but in
serious cases it disappears.
Borderline intelligence, degeneration
of higher mental powers, some have
recovery of IQ.
Some children hit themselves, bang
their head against furniture bite them-
selves or others, pull out their hair
Self-injurious behaviors to self and
others, head banging, hitting the head.
Restlessness and rocking
from side to side or repetitive behav-
iors.
Repetitive and preservative
behaviors, stereotypical
behaviors.
Some children repeat the same words
for hours or are obsessed with images.
Echolalia (repeating words
and phrases) and obsessive
compulsive tendencies.
Some symptoms are so
pronounced that they resemble acute
psychosis.
Anxiety, schizoid tendencies, irra-
tional fears. (Catatonia also recently
reported)
nsomnia, some children spend days
without sleeping or sleep one or two
hours a night.
Sleep disturbances, insomnia,
diffculty falling and staying asleep.
Photophobia is present but may go
unnoticed. Also sensitivity to sound
and touch.
Oversensitivity to light,
photophobia, sound sensitivity and
aversion to touch
Loss of appetite and vomiting may be
observed with muscular hypotonia
(low muscle tone)
Anorexia, nausea, feeding
problems, decreased muscle strength,
(especially upper body)
Diarrhea has been described in the
early phase but in most cases there is
constipation.
Diarrhea, constipation,
gaseousness, abdominal
discomfort and colitis.
Loss of eye contact and
preference to be left alone.
Appear unaware of what is
going on around them.
Poor eye contact, gaze
avoidance, problems with
joint attention.
Bright red feet and hands, peeling of
skin in sheets.
Rashes, dermatitis, other skin prob-
lems.
Click here to watch
From Acrodynia
to Autism:
Mercury Across Generations,
More Evidence of Harm
A
s 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 its autism or
something elseits 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
nd we need a new blueprint. When
we take time to reect 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 ve
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, happinesswe pick the feeling.
You see, we, as parents, all have
our stufour 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 doesnt 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 breathhold
the breathand gently exhale. Feel
your bodyhow 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 cant keep your feet
steady sitting in a chair, constantly
dget, 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
exibly, yet knowing and feeling you
have a rm condence that all is well.
As you imagine yourself being con-
nected to the earths 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 brains function to
move from a ght or ight response
to one of focus and choice. _
42 TIPS FROM THE TEAM
The Parenting Evolution
Moving from ght or ight to focus and choice
B Y L AU R E N Z I ME T
LAUREN ZIMET, MS/CCC/SLP LA LAUURREENN ZI ZIME METT, , M T
Passionate 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.
S
T
O
C
K
.
X
C
H
N
G
TIPS FROM THE TEAM 43
N
ot 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 signicant 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, detoxication will not be able
to keep up and chronic inammation
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-
ed 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 difer-
ent combinations are signicant 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
nding reasons to treat the A1298C
form as well. The best way to get the
results interpreted and treated appro-
priately is to nd a practitioner well
versed and experienced in the various
combinations of MTHFR mutations
and how to treat them.
Treatments
The 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 nd 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 dont want to miss
B Y B A R RY S ME LT Z E R
BARRY SMELTZER, MPAS, PA-C BA BARR RRYY SS YY ME MELT LTZE Z R
...is the owner of Healing
Provisions PLLC in San Antonio
andspecializes 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 signifcantly
improved. Barryhas presented to both local
and national organizations including TACAnow,
Holistic MomsNetwork, San Antonio Natural
Parenting, Any Baby Can, National Autism As-
sociation and Autism One. He has also written
several articles for theAutism File and Autism
Science Digest. Barry is happily married to his
wife of 15 years, Linda, and is the father of fve
wonderful children.
P
H
O
T
O

C
O
U
R
T
E
S
Y

O
F

F
L
A
V
I
O

T
A
K
E
M
O
T
O
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 DE I R DR E I MUS
O
f all the reasons to go green
health, style, environmental
responsibilityaffordabil-
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 benet and for that of your
family, shouldnt come with a hefty
price tag, and it doesnt have to. Youll
be surprised just how easy, afordable,
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 TOXINS
According 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 childrens
healthand risk emptying your bank
account by purchasing pricey green
cleaning productslook no further
than your own cupboard for inexpen-
sive, efective alternatives.
Distilled white vinegar works bet-
ter than any toxic disinfectant you can
buy, and is notably cheaper: a gallon
(128 ounces) of the stuf 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 voilayouve concocted a home-
made, ridiculously efcient, reason-
ably priced cleaning solution.
Other environmentally sound
cleaning agents that wont 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-
ingand then repurchasingclean-
ing products from the store, you ll
accumulate fewer plastic bottles and
save money on gas, thereby decreas-
ing your carbon footprint.
DEIRDRE IMUS... DE DEIR IRDR DREE IM IMUS US...
Deirdre Imus is president and founder of The Deirdre Imus Environmental Health
Centerat HackensackUniversityMedicalCenter, founder of dienviro.org, a website
devoted to environmental health, and co-founder/co-director of theImus Cattle Ranch for
Kids with Cancer. She is a New York Times best-selling author, and a frequent contributor
toFoxNewsHealth.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 feld of environmental health.
b
by not purchasing
and then repurchasing
cleaning products
from the store, youll
accumulate fewer
plastic bottles and save
money on gas, thereby
decreasing your carbon
footprint.
a
Going GREEN
on a Budget
44 GREEN HOME HEALTHY KIDS
GREEN HOME HEALTHY KIDS 45
KEEP THINGS LOCAL
Another 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
priceytheres no two ways about it.
Rather than sacrice 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 youll pay
for organic produce because of the
increased resources required to get it
to the marketspecically gas. This
is why buying locally grown organic
goods is key, and not just because it
can be more afordable. 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 difcult to appreciate at the
supermarket, where organic items are
sometimes twice as expensive as their
non-organic equivalents.
Thats why its important to know
which conventionally grown fruits and
vegetables are dirtiestor most laden
with toxic pesticidesand which are
cleanest. Every year, the Environmental
Working Group releases its list of The
Dirty Dozen and The Clean Fifteen in
an efort 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 youre going to eat and enjoy these
nutritious itemswhich you undoubt-
edly shouldits probably worth shell-
ing out the extra cash for the organi-
cally grown version.
BREAK SOME
HOUSEHOLD HABITS
Adopting a more environmentally
responsible lifestyle means chang-
ing habits, particularly around the
house. These small but seismic shifts
will also save you money, and ofer
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 youre 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-1
` When possible, replace old
electronics and appliances with
those that bear the government-
backed ENERGY STAR label.
Theyll 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 Americans 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.
Its never too late, or too early, to
make small changes that can have
major repercussionson 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 PAU L WHI T E L E Y,
MA R K E A R NDE N
& E L OU I S E ROB I NS ON
Bench to
KITCHEN:
Introducing
The Autism Food Club
E
xperimental 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 di sorders (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 efect, the requirement
to translate research ndings 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-
ditionpossibly 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-
tic 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... PPAAUL UL WWHHIITE TELE LEY, 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, hes 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... EL ELOU OUIISE SE RROB OBIN INSO S 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... MMAR ARKK EEAR ARND NDEENN, , 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. Marks businesss represents
his success in these felds and refects his passion for developing innovative businesses and creating
healthier communities. In addition to running businesses Mark also provides healthy food demonstra-
tions with a diference 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 frst 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
efect following dietary change.
4
Some of the most recent reviews
of the evidence surrounding the use
of the GF/CF diet for autism
5
while
not wholly conrmatory, highlight
how for some on the autism spec-
trum, dietar y i nter vention i s 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 scientic 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 reective 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 auti sm
researcher Paul Whiteley, dietician
Elouise Robinson, and chef Mark
Earnden. The di scussions 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
Aut i sm Food Club (www.t heau-
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 ofers 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. Its these processes which inform
questions and hypotheses about who and what we are. With that most valuable
of commodities in mindlifescience 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 afair. 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, well 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.
b
The fusion of science
and cookery is
perhaps not the typical
expectation one might
have of autism research
and practice.
a
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 fndings. 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 ofering
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 qualied
dietician and practicing chef were in
short supply. By saying this, we are
not trying to belittle the often huge
eforts 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. Were
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 T (40 ml) water
C (50 grams) sugar
2 heaping cups (200 grams)
shredded (desiccated) coconut
1 tsp. vanilla extract
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 favorsome products, ofering 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 EDUCATIONSPECIAL 49
Sticky pork ribs, with baked potato and coleslaw
Makes 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)
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. salt
2
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 fve 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 potato
4 large baking potatoes
2 T olive oil
faked 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
11 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, fnely shredded
10 radishes, fnely sliced
1 red pepper, deseeded and fnely 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 efect 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 oil
1
2 large onion, peeled and chopped
2 large stalks celery, fnely chopped
4 cloves garlic, peeled and chopped
2 to 3 tsp. dried thyme
tsp. chopped fresh rosemary
1 tsp. freshly ground black pepper
4 C (400 grams) chopped broccoli,
stalks and tops, fresh or frozen
5 C (1.25 L) water
1 gluten-free stock cube or
1 T homemade bullion
1 C (150 grams) blanched almond
or almond four
Handful of fresh parsley,
fnely 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 sailors
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). _ B
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WALLIS: 1 IN 64 51
A Brilliant Week
Tracking the progress of a
promising young man
B Y CA ROL S T OT T
B
rilliant, said Wallis, when I
asked him about the rst week
at his new school. And what a
cause for celebration it was.
I rst met Wallis over three years
ago, when he and his family were
struggling to make sense of his dif-
culties. Wallis had very few friends;
he didnt like school, some subjects
were too difcult. He had lots of melt-
downs; times when he just couldnt
cope. His words.
Helen, Walliss mum, said that
he was an intelligent boy who loved
reading and knew lots about history.
She had been worried about Walliss
behaviour for years; something was
wrong. She couldnt understand why
he hated to be touched; she didnt
know why he had no friends or why
he didnt get invited to parties. He had
lots of melt-downs and times when he
just couldnt cope. Her words.
Wallis was given a diagnosis of
Aspergers Syndrome (AS) by the
BeginningwithA (BWA) team when
he was almost seven years old. His
very discrepant cognitive prole and
escalating behavior problems were
enough for us to support the familys
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. Walliss needs could
be met in mainstream, at his current
school, they said. He left the school
soon afterwards, when it became clear
that this wasnt really the case.
Despite the change of school
(still mainstream) and extra help in
the classroom, Walliss difficulties
escalated to the point that almost
everyone working with him was sup-
porting the request for a specialist
educational placement. His parents
identied 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 conrmed that there
was a place available for himif the
LEA agreed. The LEA didnt 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 staf train-
ing. It was a strange kind of coping.
Soon after this, the school threw in
the towel and notied the LEA that,
they too, were unable to meet Walliss
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 schoola specialist school
for high-functioning children with
an ASD.
Today (its 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 doesnt
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.
Its been really great so far.
And when I asked Wallis what he
thought? Its 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 lets hope there are lots
more brilliant weeks to come. _
FIND OUT MORE
You can keep an eye on Walliss progress on
Facebook at http://www.facebook.com/
Wallis1in64
Winter 2013/14 TV showthird in the Wallis
1 in 64 serieswill 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... CA CARROL OL SSTO TOTT TT.. ...
... is a Chartered Psychologist
and epidemiologist special-
izing in the identifcation 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
Potential
N-acetylcysteine, BH4, gluten sensitivity,
and more
NAC AND AUTISM
S
everal studies i n recent years
have pointed to N-acetylcysteine
(NAC) as a possibly efective treat-
ment i n reduci ng 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 efects, 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.
Ghani zadeh and Derakhshan
point out that neuroinammation 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 sons 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
signicant 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 nd there to be
some interesting observa-
tions here, said Autism
File editori al advi sor
Dr. Whiteley. I wonder
whether the link with
nail-biting and onwards
anxiety suggested for
NAC might also be part and parcel of
the efect 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?
T
etrahydrobiopterin, 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-bl i nd, pl acebo-
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
signicant improvements in several
areas including social awareness,
hyperactivity and speech. Side efects
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
efects 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
A
s 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 afected 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
A
utism is often diagnosed alongside
many other conditions in the same
individual. One of these comorbidities
that creates perhaps the greatest health
concernis 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
217 also have epilepsy
` 26% of children aged 13 and older
with autism also have epilepsy
Additionally, epilepsy is associated with:
` Older age
` Lower cognitive ability
` Poorer adaptive and language
functioning
` A history of developmental
regression
` More 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 ramications 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
A
s frequently pointed out here and
in numerous parent reports and
published research, many children with
autism also sufer 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 studys 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 efect 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
diferences detected.
The researchers also found that
within the samples from the group
of children with autism, there were
signicantly lower amounts of three
types of bacteria: Prevotella, Coprococ-
cus, and Veillonellaceae, suggesting
a potential inuence of unusual diet
patterns observed in autistic children.
` Kang D-W. et al. Reduced Incidence
of Prevotella and Other Fermenters
in Intestinal Microfora of Autistic
Children. PLoS ONE 8(7): 2013; e68322.
doi:10.1371/journal.pone.0068322. _
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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
benets of going GF...
Q
My 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.
Weve started to see some
regression and Id really
like to try this again. Im
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?
A
Everyones journey is different,
just like every child is diferent.
We implemented the GF/CF diet as the
rst 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 ateit 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 rst time
in ve 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 efects 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 elds
all at once. As we all know, geneti-
cally modied 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 fog
` Daily formed bowel movements
` Less irritability (and for my
husband, less joint pain)
` More energy
` Increased expressive language
` Increased ability to handle
transitions
` Better ability to try new foods and
textures
` Less stimming (OCD traits have
also decreased)
` Better focus and attention
` A 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... KKIIMB MBEERRLY LY LLIN INDDER
Kimberlys 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... CA CATH THYY JJAA YY ME MESO SON.
is a dual-certifed teacher
with ten years experience in
early and elementary educa-
tion. Having stepped away
from the classroom to raise
her fve 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 fnd answers, help and healinga
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... RRUT UTHH 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 beneted from going
gluten-free as well.
The abundance of GF product
companies has dramat ical ly i n-
creased since our first gluten-free
journey several years ago. More and
more restaurants are getting on the
GF bandwagon too, ofering 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 doesnt mean
it is a healthier alternative; read labels,
watch out for other ofending 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 childI wish your family health
and success!
Kimberly Linderman

Q
My 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?
A
If 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 wouldnt
wish to hear my son ask me is what
caused his autism because I think
its 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
afect ones health, planning how you
respond can be easy.
My rst 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, nally, 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 i s able to handle al l of
the information and further ques-
tions that may ari se, 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 youve worked so hard for
his future.
Being truthful about the cause of
our sons autism can be benecial
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 hi s 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
Q
Since 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 shouldnt 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?
A
As 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
professional s to express si ncere
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,
Im passionate about the positive
aspects of autism. I found myself
at one point going to that defen-
sive ot her extreme, mi ssi ng t he
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 nding 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 Im 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
rst responder eld 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. Thats a burden they dont
need to carry through life. Instead, I
have to learn and teach them too.
The simple words I am sorry
have as muchif not morepower
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
` TACAs My Child has Autism cards
https://www.tacanow.org/store/My-
Child-Has-Autism-Cards-100/`
` Dennis Debbaudts Safety Cards
http://www.debbaudtlegacy.com/
autism_on_scene_response_cards.cfm
b
The simple words
I am sorry
have as much
if not morepower
than the other three
words parents want
to hear from their
child with autism:
I love you.
a
SPECTRUM MUMMY 57
Why is it that the last person you want to see bumps
into you at the worst possible time?
B Y MA E F ROS T
T
here 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
dont 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 wouldnt want to be seen dead
in thembut who can afford to
just throw these things away?).
Oh, and lets 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. Its definitely going to be
this day, isnt 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 nd 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 youre 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 outsome-
thing vital, denitely more impor-
tant than me trying to look like
Heidi Klum in a bikini. And we
dont really have anything left in
our house that isnt healthy, so
theres nothing to ceremonially
chuck out and ban. I could try
starvation so I can t in more of
my clothes, but that will make
me grumpyand si nce I am
the cheerleader in this particu-
lar household, that wouldnt do
at all.
As for a backpacki ng trip
through the Amazon, or a month
on a whale-watching project, or
something else suitably wind-
swept and i nteresti ng: To be
honest, my life never has a dull
moment. I could really use two
months in a dark room with a
comf y bed and room service,
not seeing anything interesting
at allnow that would make a
nice change.
Also, I have all these bills to
pay for things my kid needs that
should just happen but dont 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 Im
not spending a penny on anything
that isnt vital with a capital V.
I have no words of wisdom and
Im 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 ngers crossed
we dont end up on one of those
email circulars... _
Close Encounters
G
e
t
t
y

I
m
a
g
e
s
/
H
e
m
e
r
a
MAE FROST... MMAAEE FFRROS OSTT.. ....
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 cofee
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.
_
ITS SAID THAT ON
AN AVERAGE DAY,
A PERSON CAN SPEAK
16,000 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.
ID GIVE ANYTHING IF
MY CHILD COULD SPEAK
JUST ONE.
TO DONATE OR LEARN MORE, VISIT NATIONALAUTISM.ORG.