Holiday

Special Top toys, gifts, and treats

Sensory Strategies | Latest Research | Holiday Recipes

D E C- J A N 2 0 1 4 I SSU e 53

Providing Hope and Help for Autism Families

AUTISM & FaITH

PEAK OF SUCCESS

Holidays set the stage for spiritual growth

Mt. Kilimanjaro climb benefits ASD families

TOXIC WARNING
Is mold making your family sick? What you need to know NOW

Click here to see a preview!

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AUTISM FILE 1

POLLYS PIECE

Forward Motion
Ringing in the New Year with hope and determination
B Y P OL LY TOM M E Y

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.

POLLY TOMMEY

...The Autism Trust USA along with other autism organizations will be holding the rst ever one-day autism summit in Austin, Texas on April 12th during World Autism Month.

s 2013 comes to an end, I cant help smiling at all we have achieved as a team here at the Autism File. We launched online and now reach even more people affected by autism worldwide. Were able to bring to you all the very best experts in autism directly to your inbox and free of charge. When I say experts I mean the parents and professionals who truly understand autism and what it is really about, people who can support, educate, force change, and bring much-needed answers to everyday questions. Were very excited to announce a new editorial board addition, Maria Milik. Maria is the mother of two boys on the spectrum and is a long-time autism advocate. Please join us in officially welcoming Maria to the Autism File team. As we look to 2014 and all that it may bring, we have lots of exciting plans and are working with many other autism organizations to bring you the latest on their developments. Our policy has always been to work together with allour mutual goals have to be achieved in unity. In that spirit, The Autism Trust USA along with other autism organizations will be holding the rst ever one-day autism summit in Austin, Texas on April 12th during World Autism Month. Our aim is to explore Maria Milik and Polly everyday problems associated with autism and provide answers through expert panel discussions. People will be able to interact with the panelists either in person or online. Aidan Quinn and Rob Schneider will be there, alongside many of our authors and board advisors. Youll be able to meet the large team of people you have read so much about in Autism File and put forward your questions to help your child. Tickets are limited and on a rst-come rst-serve basis. What a wonderful holiday gift for a parent in need! Siblings will be there to discuss their lives and shed some light on their concerns for the future of their brother or sister with autism. Find out more about the summit and our very exciting panelists at www.theautismtrust.org. And dont miss my interview with Aidan Quinn in the upcoming February/March Autism File. My son Billy will be 18 in 2014. I started this magazine when he was only three with the hope that we as parents could spread awareness and knowledge on what at the time was a misunderstood condition. We were told that Billy would never speak or live a life with purpose. Today, he talks, writes, and works for The Autism Trust making products and generally helping with tasks. He wants a girlfriend and tells us he would like a party at Hooters for his 18th! (Most parents would be horried at the thought, but were grateful hes even at the level where he can ask us for anything.) Billy is a great example of why we should never give up hope that our children can and do make progress. As we ring in the New Year, I want to thank all of our team here at Autism File headed by the truly dedicated and most wonderful autism mother ever, Rita Shreffler. Rita is also our editor and without her, there would be no magazine. We are always here for you and go into 2014 with the determination to continue to bring you the best and work towards getting the magazine out to everyone who needs it. If you know someone who needs our help, please sign them up for the magazineits free and the best gift you can give anyone needing support, education or direction in a complex world of autism. Here is the link to sign up for our ongoing free magazine. www.autismmediachannel.com Happy holidays and a very happy New Year to you from all of us here at Autism File!

2 FEATURED coNTRIBUToRS

Editor-in-Chief Polly Tommey polly@autismmediachannel.com Executive Editor Rita Shreffler rshreffler@autismfile.com Art Director Mary Francis McGavic production@autismfile.com Editorial Assistant Mollie Shreffler merilynn.shreffler@burrellcenter.com Advertising Director of Advertising and Marketing Kimberly Linderman klinderman@autismfile.com 309.368.9186 Advertising Account Executive Aimee Allenback aimee@circlemgmt.com 910-545-0460

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 country, 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.

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 Certified Nutrition Consultant specializing in autism, and author of Nourishing Hope for Autism and Cooking to Heal. Maria Milik Maria Milik is the mother of two boys on the autism spectrum and a long-time advocate for families affected by autism. She has developed a wide network of parents and professionals seeking answers for the many challenges an ASD diagnosis brings with it. James A. Moody Jim Moody is a practicing attorney and Founder of Citizens for a Competitive Economy. He is very active in causerelated 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, finance and legal expert in numerous publications. She is co-founder of Colored My Mind, an autism outreach nonprofit. 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 field of adolescence and the transition to adulthood. She is the past co-chair of the South Counties Autism Regional Taskforce of the California Senate Select Committee on Autism and Related Disorders. Carol Stott Carol Stott is a Chartered Psychologist and epidemiologist specializing in the identification and assessment of children and adults with autism and related conditions, and the cofounder of BeginningwithA, (BWA), a diagnostic training and assessment consultancy based in Cambridge, UK. Eric Uram Eric Uram is Executive Director at SafeMinds, a non-profit dedicated to helping our children by stopping the environmental exposures triggering the epidemic of autism and its related problems. Anju Usman, MD Anju Usman specializes in biomedical interventions for children with ADD, autism and related disorders, and is cofounder of the Autism Center for Enlightenment, a nonprofit which supports research, education and biomedical therapies for families in need. Paul Whiteley, PhD Paul Whiteley has researched autism spectrum and related conditions for 15 years. His blog (www.questioning-answers.blogspot.com) focuses on discussing various facets of autism and related research. Andrew Wakefield, MB, BS Andrew Wakefield is an academic gastroenterologist who has published over 130 original scientific articles, book chapters, and invited scientific commentaries. The content of the letters/articles and advertisements in Autism File reflect the views of the respective contributor/advertiser, and not those of the editor/publisher.

Keith Berndtson, MD
Keith Berndtson, MD, is certied by Ritchie Shoemaker, MD, to evaluate and treat patients with chronic inammation related to poor clearance of mold toxins. He is ILADS-trained to evaluate and treat patients with Lyme disease. He specializes in patients with multi-symptom illnesses that persist despite usual medical care. His website: www. parkridgemultimed.com.

Chris Mitchell
Chris Mitchell is Operational Manager at Autism Works and gives talks, seminars and workshops on Aspergers Syndrome, including on mindfulness techniques to help cope with stress and anxiety. His third book, Mindful Living with Aspergers Syndrome, published by Jessica Kingsley Publishers, is due out later this month.

Sally Park Rubin

Sally Park Rubin is co-author of The Overfunctioning Womans Handbook: Uncommon Sense to Deal with Impossible Jobs and Impossible People. She is show creator, producer and director of The Rocket Family Chronicles (The Autism Channel). Sally holds a second degree black belt in Aikido and is a meditation practitioner. She home-schooled her son with autism and is currently working on a new book, Vertigo, about how to stay centered and on-purpose while experiencing the dizzying life of an autism mom. She lives in Oakland, California with her husband, Ed, and their son, Sam.

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Intuitive and Fun Picture-to-Speech Communication for Nonverbal Children

Avatalker AAC is a robust, full-featured augmentative and alternative communication solution designed for the iOS platform (Apples iPad and iPad Mini). It gives nonverbal children and adolescents the ability to build phrases and sentences pictographically, which are then converted to audible speech. It features a 1,500+ word vocabulary and exclusive symbol set library by Aurora Symbols that is easy to navigate and fun to use!

Introducing Avatalker AAC

Avatalker AAC is designed for easy communication of wants, needs and thoughts through an efficient and intuitive interface, with two levels for a wide range of ability. We minimized the number of finger-touches needed for phrase building to ensure the user always knows where to find their next word. Finding and selecting symbols/words is a breeze with Avatalker AAC!

Why Avatalker AAC?

What kind of bird do you see?

Coming January 2014

Watch our recent interview with Polly Tommey of Autism File magazine

I can see a cardinal

Click here to see the YouTube video

www.avatalkeraac.com

DEcEMBERJANUARy 2014

in this issue
f e at ur e s THATS THE SPIRIT! By Christina Adams. . . . . . . . . . . . . . . . . . . 22
Holidays can be both memorable and challenging for autism families.

AUTISM TAKES A BOW By Sally Park Rubin . . . . . . . . . . . . . . . . . 26

New operatic production reects on the experience of living life on the spectrum.

REACHING NEW HEIGHTS By Chris Mitchell. . . . . . . . . . . . . . . . . . 30

Mt. Kilimanjaro climb by a young man with Aspergers benets other families affected by autism.

22

For families with ASD, holiday celebrations can go from traditional to the delightfully unexpected when they explore new avenues to spiritual growth.

TOXIC MOLD AND AUTISM By Keith Berndtson, MD . . . . . . . . . . . . . 36

Mold exposure can exacerbate autism symptoms and take a major toll on health.

d e pa r t m e n t s HolidaY GiFt Guide By the Autism File Team . . . . . . . . . . . . . . . . . . . 6

Top resources for autism-friendly gifts and toys.

all we can handle By Kim Stagliano . . . . . . . . . . . . . . . . . . . . . 11

Reections on marking lifes milestones when autism is a factor.

26

Samlandia: A Gondola Ride Through Love and Out of Autism takes a unique look at the heroic journey that autism can become.

SENSORY SMARTS By Lindsey Biel . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Top tips for managing sound sensitivities.

THERAPY, BEHAVIOR, AND LIFE SKILLS

By Dan L . Edmunds, Ed.D. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Build upon strengths to best support individuals on the spectrum.

AGES & STAGES By Chantal Sicile-Kira . . . . . . . . . . . . . . . . . . . . . . . . . 20

Creating naturalistic community connections.

GREEN HOME - HEALTHY KIDS By Deirdre Imus. . . . . . . . . . . 44

Avoiding articial and processed foods during the holidays is well worth the effort.

ADVOCACY By the SafeMinds Team. . . . . . . . . . . . . . . . . . . . . . . . . . 46

Addressing a hopelessly broken vaccine injury compensation program.

30

A trek to the top of Mt. Kilimanjaro provided Chris Mitchell the opportunity to boost self-esteem while helping others back at home.

NUTRITION SOLUTIONS By Elouise Robinson . . . . . . . . . . . . . . 50

Festive fare to celebrate the seasonall GF/CF!

SAFTEY MATTERS By Lori McIlwain . . . . . . . . . . . . . . . . . . . . . 54

Top tips for countering wandering incidents at school.

regulars
PollYs Piece . . . . . . . . . . . . . . . . . . . . . 1 Featured Contributors . . . . . . . . . 2 GIVE AUTISM A CHANCE. . . . . . . . . . . . . . 10 WakeField . . . . . . . . . . . . . . . . . . . . . . . 12 The WaY I See It. . . . . . . . . . . . . . . . . . . . 16 Tips From The Team . . . . . . . . . . . . . . . 42 Wallis: 1 in 64. . . . . . . . . . . . . . . . . . . 57 research roundup . . . . . . . . . . . . . . . 58 Questions & answers . . . . . . . . . . . . 60 SPECTRUM MuMMY . . . . . . . . . . . . . . . . . 63

36

While not considered a causal factor, mold toxicity can adversely affect health while increasing autism symptoms.

ON the CoVeR: Autism File contributor Christina Adams with her husband, Tony Page, her son Jackson, and Tonys daughters, Julianne (l), and Gwendolyn (r). Not pictured is Tonys other daughter, Christina.
PHOTOGRapHY BY MImI NGUYen.

6 HoLIDAy SpEcIAL

Holiday Gift Guide

Smart shopping for sensitve kids

hopping for our kids with autism can be tricky for many reasonssensory issues being chief among them. Check out these resources for a wealth of ideas on what to get for all the special kids on your list!
Got-Autism www.got-autism.com Therapy Shoppe www.therapyshoppe.com Fun and Function www.funandfunction.com Crazy Aarons Putty World www.puttyworld.com Pocket Full of Therapy www.pfot.com Plan Toys www.plantoys.com Sensory Spectrum Shop www.sensoryspectrumshop.com Thinking Moves www.thinkingmoves.com Toys to Grow On www.toystogrowon.com Vision-audio EASE games www.easecd.com Autism Toys and More www.autismtoysandmore.com Automoblox www.automoblox.com Flaghouse www.flaghouse.com Sensory University Toy Company www.sensoryuniversity.com Step Forward www.stepforward123.com Helpful companies from Sensory Smarts http://sensorysmarts.com/helpful_websites.html

Achievement Products www.achievement-products.com Gummy Lump www.gummylump.com Fat Brain Toys www.fatbraintoys.com Autism Treasure Chest www.autismtreasurechest.com Kid Companion Chewelry www.kidcompanions.com Lakeshore Learning Materials www.lakeshorelearning.com Melissa and Doug www.melissaanddoug.com One Step Ahead www.onestepahead.com

Minds Eye
Art Across the Spectrum
C A N D y C A N e A c R yl I c B y C A N D A ce W A te R S

Candace Waters, a vivacious red head, wa s diagnosed with autism at three years old. She is now 13 and nonverbal. She is, however, able to express herself through her bright and cheerful paintings. Candys mom Sandy believes Candys paintings give people hope, inspiring them while raising autism awareness. We feel Candy is giving all of us a unique little glimpse into her world, Sandy says. Her paintings allow us to see what she sees and feel what she feels. As you can see by her beautiful

paintings, it must be a bright happy world. Painting is therapeutic for Candy. When she paints, she laughs. Candy has been painting since she was six years old when a teacher sent her home with some materials and asked her parents if she could paint a picture for their fundraiser. One of her rst paintings sold for $100 in a local gallery. Her parents keep most of Candys originals. Some of her prints have sold for over $500. Her art has received local and national media attention and is featured in my book, The Art of Autism: Shifting Perceptions. Candys Ray of Hope painting will be displayed in the newly

constructed Dan Marino Foundation museum located in the heart of downtown Fort Lauderdale, Florida. Candys parents wrote a song for Candy titled Faith, Love & Hope which has become an anthem for autism awareness. Candy has thousands of fans on her Facebook page.
FinD Out mORe
Candy Waters Autism Art Facebook Page https://www.facebook.com/pages/CandyWaters-Autism-Artist/559925447386478 You can buy Candace Waters art cards at www.autcards.com

8 LETTERS To ThE EDIToR

Speak Your Mind

Cover-to-cover
What a beautiful magazine this is! From the fabulous photo of Maria Milik and her boys on the front cover to the great NAA ad on the back, I loved everything in this issue. Ive always enjoyed Kim Staglianos column and the one in the current issue made me laugh out loud. Autism moms and dads dont do that nearly enough. Thank you, Kim and Autism File. Lisa
ASD & Talent
Building job skills
through ART
Going Green on a Budget | Latest Research | Nutrition News
O C T - N O V 2 0 13 I SSU E 52

Providing Hope and Help for

Autism Families

DO-ITYOURSELF!
Top ASD Therapy Tips

MOVING OUT

Latest housing options for youths & adults

MERCURY MENACE?

Sensory Smart Art

Sensory issues continue to be one of our biggest challenges in raising our son, now 12, who has autism. I always look forward to Lindsey Biels Sensory Smarts column and this one was really helpful. He does have an interest in several different art forms but sometimes its a struggle to get him to focusand I think sensory issues are a big part of that. Thanks for these useful tips. Im not only using them at home but am sharing with the staff people who work with him at school. Ellen

David Kirby Reports from Down Under on the Pink Disease/ Autism Link

status of mercury in medicine since I rst read the paper by Sallie Bernard, et al called Autism: A Novel Form of Mercury Poisoning back in the year 2000. That paper was a game-changer for my husband and me: the list of autism symptoms compared with those for mercury poisoning is stunning. Its absolutely incredible that mercury is still in most u shotsand sad that so many people still line up to receive them anyway. Kay Thank you David Kirby and Autism File for the great article on Acrodynia. Im grateful that Mr. Kirby is still following this topic. We need to get this out in the public eye as much as possible. My 18 year old daughters life was forever changed when she received six vaccines in one day at the age of 18 months, many of which contained
38 BIOM EDICAL UPDATE

AUTISM FILE JUNEJULY 2013 issue 50 SUMMERTIME SMARTS SAFETY TIPS TO CONQUER WANDERING INCIDENTS ASD & VIOLENCE: SETTING THE RECORD STRAIGHT WWW.AUTISMFILE.COM

on DIY home therapies. Im going to try these with my two kids, both of whom were diagnosed with autism ve years ago. Looking forward to the next issue! Barbara

Time for a Change

My husband and I are just starting the process of seeing what living arrangements exist in our community for our 20 year old son who has autism. The article on out-of-home placements was very timely for us. Were not in a hurry to move him out but know that we wont be around forever to care for him and would like to have some peace of mind knowing that hes in a place where he can be as independent as possible and most of allsafe. I thought the list of Top 7 Housing Considerations was right on target. Many thanks! Jean
DIY AUTIS M THERAPY 29

Do it Yourself!
A friend sent me a link to the Autism File and I just want to say thank you for this resource. I had no idea this publication existed and have sent the link to several moms and dads I know with children on the spectrum. Most of us are completely broke after paying for so much medical care, therapies, and supplements so I especially appreciated the article by Alix Strckland
28 DIY AUTIS

Investigatin g Many Simila Pink Disease Down Under Hig rities to Au hlights its tism B Y D AV ID KIR BY

Repeatin g Histor y

orever and a long the journday may sound clich , but thats ey from New to take. how York a three-hou After a six-hour ight to Australia seemed by teething powders, r typically applie to Los Ange to the gums Qant as doub layover, I boarded of les and d a le-decker tive ingredient children at about six in Western countries haul to Melb for the long months of in most brand age. One acs: inorganic night I asked ourn e. Duri ng the The profitable mercury. long wed a ight attendant how teeth ing-p been in the industry, along owder hours, he said. Half air. Nin e I medical exper with scientists and was alw way ays screami Australia there. ts, insisted ders were the powng, but most may be a world away harm less, Ame rican cryi , and to the ng essen healt of a s will feel continuously home there developing tial at . I did. I was I had They noted h child. about the also excite that most purp d expos dren devel a red rash. heading Down ose of my trip. I was oped no symp ed chilThey didnt one in 500 Under not toms (only ism, but to kids for tourgiven the work got the symp powders know what ing document on a groundbrea kwas wrong. be the sourc toms), so it could not Autism: Mercu ary, From Acrodynia e. The fact to toms appea that symp More Evide ry Across Generation red nce of Harm s, children were around the same time the mostly , spon sored teeth ing was forgotten illnes by SafeMinds, coincident purely called Pink al. about Disea se in s, acrodynia, more I wrote commonly dynia in my book Australia. Pink Disea Evidence of exten sively about symptoms Harm America and se ravaged children were so like , largely becau acroin Sallie Berna se the 20th Centu Australia in the rst Europe, North rd and other those of autism. Lyn ry. Many did half of the simil SafeM Redw arities and ood, inds paren comes from not ts recognized the fact that survive. The name Mercury Poison published a paper veloped raw, the many child , Autism: ing, that gave side-by-side A Novel Form of symptoms peeling hands and feet. ren deincluded social compariso Other ns of of eye conta withdrawal TOXIC TIMES ct, loss of langu , lack and self-in age, repeti teething powde Mercury-containing juriou products such ing, toe-walking s behaviors, body- tive are now known rs, commonly used in as Calomel rockthe first half and , sensitivity to have serious and touch, to light, noise ly injured countl of the 20th century, low muscle ess young childre tone, immu orders and ne disrespir n. Sound famil atory problems. iar? Some resea rchers and pected the parents susghastly symp toms were caused

rself! Do It You
M THERAPY

edule A visual sch t. with a twis

: Materials needed `` Straws machine `` Laminating sheets `` Laminating `` Plastic cup `` Tape

increase

programs to autism dly, at-home Budget-frien children with munication in functional com
ST BY ALIX ND RICKLA

is budget-frien . eco-fr iendly

dly and

r of he numbe auchildren with has tism in the US in 5000 risen from one 1975 to in diagn osed in 2001, to one in 250 one and boys 54 one in in 2013. in 252 girls have inThe numb ers y that creased so rapidl rushs are profes sional what they learn to ing to offer need to know suppo r t appro pr i ate famil ies and help to children. raising these profes Even with newating in siona ls gradu each year, elds related for autism the demand outweighs servic es far of available the amou nt es. autism servic

with auPARENTS AS t of a child ing As the paren antly search

THER APISTS

const child as tism, you are and teach your e sucto stimulate unicat ng to comm well as learni him. Sometimes the cessfu lly with crave with your child interaction you essent ial to reach. It is seems out of box of tricksac c have a magi fun and challenging are s functivitie s that se your child enough to increa tion. unica paren ts tional comm r coach ing, theraGiven prope childr ens best its to can be their are many benef pists. There ly with your child. worki ng direct er to accom plish g famil y Work ing togeth s a very stron goals build builds the ing togeth er Creat ts and bond. between paren bond not only ASD, but with typithe child with siblings as well. In ping mater ically develo ng your own progr am addition, creati childs home als for your

Re-u and is eco-friendly affordable. With rces, you minimal resou pretty can create some ing tools. fabulous learn

sing materials

Many pectrum A u t i s m S sensory Disorders have difficu lties integr ation proce ssing making the sen sor y of ever yday such as n infor matio ights and s ou n d s, s nge. challe a smells down Before sitting yo u r ith t o wor k w sure that child, make s cle a n i your space clutter. Soft of free and al mulights and classic ent excell an sic provide for workbackg round on the ing with a child you sure rum. Make autism spect time in an activit y at a hat neupresent one somew t that is during environmen ize distractions minim to tral y. your work activit
BIGSTOCK

CREATE THE ENT ENVIRONM l e w i t h peop

home ning of your child At the begin your want to get program, you at the table with you, used to sitting instructions and takfollowing simple schedule can be very ing turns. A visual en of different ages choose a helpful for childrthe autism spectrum. your child will activity on time, you or complete the and skill levels , take photos of your straw and then photo attached to the To get started and snack s. ed in the , children te activities forma t. featur added bonus childs favori out in a small cut each straw. As an rced by a drink of any Print them done reinfo are could When who spark ling water) after Lamin ate them. out and attach with kind (juice, drink individual item Take turns choosing their favorite . have a sip of One at a tape to straws your child. a straw with

Repeating History
the activity. completing foods successfully activities and You can select this project. Here, for of your choice e photos of a juice the straws featur n bead toy, the garwoode a toy, a cars, box, e), a music al den (to go outsid Dr. Seuss book. a and board game

A friendly n dinosaur toke system.

Materials: `` Clothespins uction paper `` Green constr `` Markers machine `` Laminating sheets `` Laminating `` Scissors `` Velcro favorite `` Photos of foods activities and aur of your n you will Draw a dinos ructio green const use w ith choic e on the ask your child to spins have your child. can all of the clothe ties markers. paper. You of the activi clothespin y the When dinos aur with remov ed (all cut it Each to one activit color in the , delive r the dinos aur and the will corres pond getting been completed) in orcer for Lamin ate your complete beforethe pho- have been child must a piece of velcro in item as a re-enf out. Attach aur. Prepa re the re-enforcer featured completes promi sed hard work. dinos the child midd le of your printi ng and lamiyour childs by to. Each time a clothe spin. e them g your pictures remov and then cuttin spins an activi ty, nating them number of clothe out. Select the

I loved the piece from David Kirby in your October/November issue, Repeating History. Ive been following the

mercury in the form of thimerosal. Weve worked hard over the years to recover her and although shes improved in some ways, shell probably never be able to live independently. I know countless families who have the same story to tell. The combination of government and vaccine makers has wreaked havoc upon a generation of innocent children. Max

OWN DIY BUILD YOUR -KIT THERAPY TOOL of available home

wealth aroun d You have a ials sittin g progr am mater very moment. Reat this your house iendly and ials is eco-fr ces, using mater minim al resour us fabulo afford able. With some pretty you can create

malearning tools. see listed the Below you will create all of the ed to terials requir tional mater ials for featur ed educa ng: once you realize oppor tuyour child. Warni us learning all of the fabulocreate for your child nities you can st of household mawith the simple be hesita nt to ever will paper roll terials, you another toilet throw away again! or egg carton

we want to hear from you!

Email your letters and photographs to us at the Autism File, rshreffler@autismfile.com.Letters may be edited for length, clarity, and

ISTOCK

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.

PRoDUcT PIcKS 9

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Great gadgets, useful products and top reads
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All of Wholesome Chows Baking Mixes are 100%: `` USDA Organic `` Non-GMO Project Verified `` Gluten Free Certified under 5ppm by CSA `` Vegan Verified `` Kosher `` Cholesterol Free `` Trans Fat Free `` Made with `` All-Natural Ingredients `` Easy to digest `` Free of Chemicals, Preservatives, and Additives Enjoy Life Foods, the leading brand in the Free From category, introduces Dark Chocolate Baking Morsels to its #1 selling Allergy Friendly Baking Chocolate line. Featuring 69% cacao and clean ingredients of unsweetened chocolate and natural cane sugar, it is the only gluten-free dark chocolate morsel on the market that is also dairy, nut and soy free! www.enjoylifefoods.com

Enjoy Life Foods Dark Chocolate Baking Morsels

Well Amy

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Well Amy LLC is a multi-faceted, consumer-oriented, food, health and nutrition-based company. We not only educate and support our clients with their health and dietary needs, but we also provide access and financial support to those who want

to make food and lifestyle changes to improve their health. In particular, we cater to the special needs of children with neurological, behavioral and development disorders, adults with chronic health conditions and those with allergies, intolerances or sensitivities to food, chemical or environmental allergens. We are your trusted source for the best selection of all-natural, allergen-free, nutrition-based, eco-friendly products. Be sure to check out Amys Wishing Well. Through our not-for-prot charity, we help those without means to realize a healthier life. www.wellamy.com

ReaD All AbOut It When the School Says NoHow to Get the Yes!
As parents of children with autism know only too well, the Individualized Education Program (IEP) process can be frustrating and even a little frightening. Written by an educator with over 30 years experience in special education, the book provides insights and strategies for parents in tackling the problems that can arise in seeking special services for their children. Using reallife examples and scenarios, When the School Says No equips parents with what they need to know to successfully navigate the IEP system. Vaughn K. Lauer (Jessica Kingsley Publishers)

Visual Supports for Visual Thinkers

Many people on the autism spectrum tend to process wordbased tasks in the visual parts of the brain. The author, an educator of special needs students for over 25 years, shows readers how to make the most of visual prompts in the home, the classroom, and in the workplace as well. Covering how to optimally lay out the classroom, encourage appropriate social rules, and increase concentration, the book also includes a CD with blank templates of the visual supports included throughout. Lisa Rogers (Jessica Kingsley Publishers)

Troubleshooting Relationships on the Autism Spectrum

Written by the wife of a man on the spectrum, Troubleshooting Relationships serves as a users guide to navigating the tricky world of relationships and the problems that come with them. Solution-based strategies are provided to address issues involving communication, mindblindness, intimacy, cohabitating, and raising a family using scripts and real-life scenarios. Written for both people on the spectrum and their partners, the approach is both straightforward and insightful. Ashley Stanford (Jessica Kingsley Publishing)

Send your tips on great reads and useful products to info@autismle.com

10 GIVE AUTISM A ChANcE

Meet Felicity Edge

Young woman with autism excels in her work at The Autism Trust

wenty-nine year old Felicity Edge has been volunteering at The Autism Trusts social enterprise store Pollys Place since it opened last year. Shes helped develop an accurate postage system log for the products bought through the online store and is the stores go-to girl for questions relating to order processing and shipping. Im responsible for customer service, updating stock and inventories, packaging orders, gift-wrapping and managing the post, said Felicity. She loves being a part of the warm environment and making customers and other volunteers feel welcome and supported.

Felicity is an absolute asset to Pollys Place, said Pollys Place manager Mo Wilson. Shes one of the most active young adults Ive ever metshe volunteers for everything and does all she can to be ac- TEAM WORKFelicity takes pride in making customers feel valued. tively involved. Her position at Pollys Place has opened doors for her in the gained from these experiences can be community as well; shes volunteered used to help others in other environat a local theatre down the street ments as well, she said. from the shop in a front-of-house role Shop online at www.theautismtrust. this summer. org.uk and Felicity will be instrumenI enjoy being involved with all tal in getting your order packed and types of people and organizations. The shipped outall in support of The things Ive learned and knowledge Ive Autism Trust.

NOW IN PAPERBACK!

www.kimstagliano.com

ALL WE cAN hANDLE 11

Milestones and Resolutions

Reections on hitting the big ve-oh
B y K I m St A G l I A N o

ike most of us, I avoid New Years resolutions for the simple reason that I know Ill stick to none of them. They are artificial wish lists whose sole purpose is to induce guilt by January 3rd when Ive broken every single one. Of course, mine usually involve food and my smart mouth. And Ive little control of either my chocolate intake or my verbal output. Im a speak-rst-thinklater kind of gal, and while that fuels my writingsometimes its really not so nice to other people. Im no Mother Teresa, remember? On December 28, I turn 50 years old. For many women in my demographic of college educated, professional, suburban (formerly) affluent, 50 means a fabulous vacation to celebrate. Paris! Rome! The Ritz! Spas and massages and Botox oh my! For others, its the promise of a significant jewelry piece. Significant, I have decided, means the jewelry must cost ve times what your husband spent on your engagement ring. Get it? Five decades! Often its
...Im Kim Stagliano, wife, mom, writer, tired! My husband and I have three gorgeous girlswho have autism. Kind of impossible, considering autism affects boys 4:1 over girls. Mark and I have learned that impossible is often inescapable 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 first daily web newspaper about the autism epidemic. I also write for The Huffington 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.

KIm StAGlIANo...

a trade up diamond ring or earrings that can serve as small satellite dishes. Ive often wondered how the original engagement ring feels when the new ring supplants it on the aging hand. Yeah, well I graced that hand when it was plump and smooth and spot freeso there you big Karaty lunkhead!) And for you guys? You arent off the hook at 50. Watch a red Corvette zoom past you on the highway and dollars to donuts youll see a blur of gray hair. Autism has thrust me into a world whereby I am aging, my gorgeous daughters are growing into womanhood and yet I still have one foot rmly planted in the days of my 30s because of the sort of care they still require. They have grown into varying levels of independence, but even Gianna, whom you would say is the highest functioning still requires prompts and targeted questioning to accomplish self-care and other tasks in the home. Oh, Ill add that targeted questioning is what our fabulous behaviorist has suggested we use to replace ABA prompting. Instead of constantly telling them Clear your dish from

the table, we say Where does your dish belong when it is dirty? They know to take the dish to the sink. This gives them ownership, makes them think and helps keep our home from sounding too much like a boot camp. My husband Mark and I still have total responsibility for the girls care and feeding, like we did when they were tots. Weve accepted this with some level of graceeven when it exhausts us. Or just plain bums us out. Our friends children are driving. They go to proms. They are away at college. Soon they will start marrying and our friends will become grandparents. Some are already PopPop and Grandma. Mark and I will never be grandparents. We know that. It hurts. But we know it is a fact we will not change and so we simply le it away and keep on keeping onas best we can. Our milestones are more like inch, foot, yard stones. We measure progress in small increments. And thats OK. In some ways, my kids are keeping me young. We consciously choose to look at our glass as half full. And thats not half bad! Even at a half century.

www.sxc.hu

12WAKEFIELD

Part of the Problem

Investing ethically is trickier than we thoughtbut should be a priority
B y A N D R ew W A ke F I el D

y feelings about the vaccineautism link and the ethics of Big Pharma are no secret. With that, last week my wife Carmel received, by mail, an update on her UK work pensiona pittance, a last remaining piton in her scal cliff. As she scanned the report on bestperforming funds, she was dismayed to see Glaxo SmithKline (GSK) listed among her modest investments. She was part of the problem! With that news I had to hang briefly over the deck. At considerable personal risk, Bella the dog slunk off into my sons bedroom. It started to rain. With little prompting, Carmel wrote to her fund manager asking for GSK and a tobacco company to be removed forthwith from her lowly portfolio. She received a prompt reply. Following your recent email please nd attached for your consideration a summary of your existing
ANDReW WAkeFIelD, MB, BS...

xxxxxxx pension fund structure and a proposed ethical alternative, together with supporting fund factsheets. The option of an ethical alternative that excluded GSK was worth a wry smile at least. But that almost didnt happen. The response continued: Given your preference to avoid Glaxo.this has made the selection of an alternative UK equity fund particularly difficult as the majority of UK ethical equity funds have exposure to one or both of the pharmaceutical giants. Some UK ethical funds have GSK along for the ride? Dont they read the news? The letter referred to due process. It continued: The objective is to provide capital growth. The Manager

seeks to achieve this by investing mainly in an ethically screened and diversified spread of global equities. Note to self: details of screening process required. One of the four funds provided for our considerationthose that excluded GSKdid go a little further in describing its aims: To provide a combination of income and long-term capital growth by investing in a range of UK equities, bonds and cash, which meet the fund predened ethical criteria. Further note to self: request criteria. These would certainly be worth sh ar ing among all et hical f und managers. Clearly, all truly ethical funds need criteria that explicitly take account any past record of unethical and criminal activities. For example: GSK fined over vaccine trials; 14 babies reported dead1
GlaxoSmithKline Argentina Laboratories Company was fined 400,000 pesos by Judge Marcelo Aguinsky following a report issued by the National Administration of Medicine, Food and Technology (ANMAT

...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 inflammatory bowel disease. He qualified as Fellow of the Royal College of Surgeons in 1985 and was awarded a Fellowship of the Royal College of Pathologists in 2001. He has published over 140 original scientific articles, book chapters, and invited scientific commentaries. In the pursuit of possible links between childhood vaccines, intestinal inflammation, and neurological injury in children, Dr. Wakefield lost his job, his career, his Fellowships, and his medical license. He is co-founder of the Autism Media Channel, a TV and video production company that seeks to bring awareness and hope to those interested in childhood developmental disorders.

www.sxc.hu

WAKEFIELD 13

in Spanish) for irregularities during lab vaccine trials conducted between 2007 and 2008 that allegedly killed 14 babies. GSK Argentina set a protocol at the hospital, and recruited several doctors working there.

Inducements and Fraud

Prosecutors said the company had tried to win over doctors by paying for trips to Jamaica and Bermuda, as well as spa treatments and hunting excursions. In the case of Paxil, prosecutors claim GlaxoSmithKline employed several tactics aimed at promoting the use of the drug in children, including helping to publish a medical journal article that misreported data from a clinical trial.

peoples individual behavior, the official Xinhua news agency reported.5

According to pediatrician Ana Marchese, who reported the case to the Argentine Federation of Health Professionals (FESPROSA), and was working at the Eva Pern childrens public hospital in Santiago del Estero at the time the studies were being conducted:
These doctors took advantage of the many illiterate parents whom take their children for treatment by pressuring and forcing them into signing these 28-page consent forms and getting them involved in the trials...Laboratories cant experiment in Europe or the United States, so they come to do it in third-world countries.2

Lack of individual accountability

No individuals have been charged in any of the casescritics argue that even large fines are not enough to deter drug companies from unlawful behavior. Only when prosecutors single out individual executives for punishment, they say, will practices begin to change. What were learning is that money doesnt deter corporate malfeasance, said Eliot Spitzer, who, as New Yorks attorney general, sued GlaxoSmithKline in 2004 over similar accusations involving Paxil. The only thing that will work in my view is C.E.O.s and officials being forced to resign and individual culpability being enforced.

Huang Hong, general manager for GSKs business operations in China and one of the detained executives, is reported as saying that the company had set goals for annual sales growth as high as 25 percent, seven to eight percentage points above the average growth rate for the industry.
GSK implemented salary policies based on sales volumes and such goals could not be achieved without dubious corporate behavior, Huang said.

The Risk:Benefit Ratio Ethical investment comes at a price. Carmels pension fund manager explained the potential downside. the difficultly with ethical funds is that the majority underperform their sector or benchmark and lack diversity given the narrow range of companies in which they can invest [Heavens above!]. ethical funds tend to be more volatile and subject to greater uctuations in value, particularly in times of extreme market conditions as experienced in 2008..the ethical alternative are higher risk. For most readers, your pension, whatever form that may take, is not invested specically in ethical funds. It is invested in Big Pharma. As long as the cycle of sales performance, prot, and stock price remains oiled by a constant ow of investment to Pharma from pension funds, company practices will not be inuenced by ethical accountability. Dont be part of that problem. Invest ethically.
References 1 http://www.buenosairesherald.com/article/88922/ gsk-fined-over-vaccine-trials-14--babies-reported-dead 2 http://www.buenosairesherald.com/article/88922/ gsk-fined-over-vaccine-trials-14--babies-reported-dead 3 http://www.pharmaceutical-technology.com/news/ newsgsk-fined-over-controversial-vaccine-trials-onargentinean-babies 4 By Katie Thomas and Michael S. Schmidt. New York Times. July 2, 2012 5 http://mobile.reuters.com/article/healthNews/ idUSBRE98207S20130903

The true size of the crime will never be known.

GSK was also criticized by Judge Marcelo Aguinsky for keeping inadequate records of the childrens ages and medical histories. It is unknown how many babies suffered serious side effects and adverse reactions from the injections, or if 14 is the true number of babies who died during the trials.3

Fines: The cost of doing business

Despite the large amount, $3 billion [fine] represents only a portion of what Glaxo made on the drugs. Avandia, for example, racked up $10.4 billion in sales, Paxil brought in $11.6 billion, and Wellbutrin sales were $5.9 billion during the years covered by the settlement, according to IMS Health, a data group that consults for drugmakers.

And how about this one? Glaxo Agrees to Pay $3 Billion in Fraud Settlement4
In the largest settlement involving a pharmaceutical company, the British drugmaker GlaxoSmithKline agreed to plead guilty to criminal charges and pay $3 billion in fines for promoting its best-selling antidepressants for unapproved uses and failing to report safety data about a top diabetes drug, federal prosecutors announced Monday. The agreement also includes civil penalties for improper marketing of a half-dozen other drugs.

Putting the Sin in Sino

A Chinese police investigation into drug maker GlaxoSmithKline has discovered that alleged bribery of doctors in China was coordinated by the British company and was not the work of individual employees, state media reported on Tuesday. Police in July detained four senior Chinese executives at GSK over allegations the company funneled up to 3 billion yuan ($490 million) to travel agencies to facilitate bribes to doctors and officials to boost the sale of its medicines. It is becoming clear that it is organized by GSK China rather than...sales

The three criminal charges involved [psychotropic drugs] Paxil, Wellbutrin and Avandia and included a criminal ne of $1 billion.

14SENSoRy SMARTS

Managing Sound Sensitivity

Many on the spectrum are challenged by the complexities of processing what they hear
B y L I N D S ey B I el , O T R / L

m ag ine tr y ing to well, starting at zero or have a conversation even negative decibels by the speakers at of sound. A student in a rock and roll concert one classroom may be or reading when theres able to detect what is gosomeone scraping their ing on in the hallway, finger nails back and outside the window, as forth on a chalkboard. well as in the room next Both hearing and speakdoor. Wit h so much ing would be quite diffisound bombarding the cult or even painful, and auditor y system, this focusing on what is said person would have a close to impossible. hard time tuning in by Keep in mind that selecting just the imporlistening is a complex tant sounds and ltering skill that includes both out all of the irrelevant hearing and processing ones. Instead, she may what is heard. Sound fe el over s t i mu l ated, includes intensity (loudoverwhelmed, and hurt ness, measured in by the auditory chaos. decibels); frequency/ pitch (the number of A Five-Step sound waves per second); Program NIX THE NOISESound sensitivities are very real for many on the duration (how long the Step 1: Invest igate. spectrum. Devices such as noise-cancelling headphones can make sounds last); and localizaConsider whether there a huge difference in handling auditory challenges when worn in tion (where the sounds is an underlying medipotentially painful situations. are coming from). A cal issue. Is there hearperson with sensory proing loss that alters the cessing challenges may have difficulty A person may pass a standard perception of different frequencies? putting all of these qualities together. hearing test with ying colors yet still Does the person have chronic ear Specic frequencieslike a high fre- have difficulties with sound sensitiv- infections that distort what he hears? quency hair dryer or a low frequency ity. First, while most people become Does she have frequent headaches or air conditionermay be upsetting. uncomfortable when sound reaches a migraines that contribute to the audiThe sound of the vacuum cleaner may certain volume, an oversensitive per- tory discomfort? In what situations is trigger ight or ght reactions each and son will become unhappy at a much he overwhelmed by sound? What are every time the person hears it. In noisy quieter volume. the particular sounds that are distresssituations, a persons auditory system Second, while most of us start ing? Is it just a few sounds or is it when may become ooded and overwhelmed hearing somewhere between zero and there are multiple sources of sound by the intensity, frequency, directional- 15 decibels of sound, a person with such as at a party? ity, and duration. auditory hypersensitivity hears too If there are any auditory or language issues, be sure to get a thorough exam from an audiologist familiar LINDsey BIel, M.A., OTR/L... ...a pediatric occupational therapist based in Manhattan, where she evaluates with sensory issues. In addition to and treats children, adolescents, and young adults with sensory processing assessing hearing skills and testing issues, developmental delays, autism, and other developmental challenges. for auditory processing skills such as 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 sound discrimination and foreground/ Kids and Teens. She is also co-creator of the Sensory Processing Master Class DVD background discr imination, the program. She is a popular speaker, teaching workshops to parents, therapists, person should also be tested for audidoctors, and others on practical solutions for developmental challenges and sensory strategies at home, school, and in the community. tory thresholds starting at negative 15
Photo courtesy of www.peltorkids.co.uk

SENSoRy SMARTS 15

decibels of soundnot typically done since this is well below the threshold norm. Learning more about auditory strengths and challenges enables everyone to understand behavioral reactions in problematic situations and to develop a well-informed plan to help. Step 2: Protect. If someone says or indicates that his ears hurt, believe it. Its invalidating and infuriating to be told a sound is not loud when it is, in fact, painful. Safeguard ultrasensitive ears by using earplugs, noise-canceling headphones, or sound-reducing earmuffs. Some great brands include Peltor and SensGard. You can nd ear protection for babies, children, teens, and adults online at www.sensorysmarts. com under toys & equipment/sensory environment or at Amazon, www.peltor.com, www.sensgard.com or check your local drugstore, music supplier, or hardware store. One note of caution: make sure the person does not wear ear protection for hours and hours because the brain and auditory system will get used to the dampened sound. Save them for specic situations that are especially challenging such as playgrounds, parties, school assemblies, and so on. Step 3: Desensitize. Sometimes unfamiliar sounds are scary, and once scared, kids may stay scared of that sound. Repeated exposure can help when facilitated by a trusted parent, teacher, or therapistespecially if the context is changed. For example, if a child is afraid of the mooing cow at the childrens zoo, it may help to record it and listen to it together at home, allowing the child to control the volume and turn it on and off. You can also listen to selections from Sound-Eaze and SchoolEaze CDs (www.route2greatness.com), which pair many of the sounds children are most afraid of such as the vacuum cleaner, blender, toilet ushing, re alarm, and thunder with pleasant, rhythmic songs to help the child predict and tolerate distressing sounds. Step 4: Build skills. Work with an OT, speech language pathologist, or audiologist who has expertise

in building sensory tolerance and processing skills. Sound therapy programs such as Therapeutic Listening, Integrated Listening Systems (iLs), Solisten, and others are designed to strengthen and integrate the persons auditory system with other sensory and motor systems. Meanwhile, the child may benet from an FM Unit, a device that lets the teacher speak into a transmitter while the student listens through a receiver, usually headphones or a small speaker. FM units bring the teachers voice to the foreground so the student wont miss what is said. Step 5: Teach advocacy. Help children, teens, and families to speak up for themselves politely yet assertively. For example, a student can learn to ask the teacher to repeat an instruction and a teenager can request that music be turned down at a restaurant if unable to hear his friends. The

person should be empowered to say The sound hurts my ears. I need a break or I need my earplugs. Kids who are overwhelmed by mov ies might enjoy the Sensor y Friendly Films program from the Autism Society and AMC Theatres. To provide a more comfortable experience, the theater turns down the volume, turns up the house lights, and allows people to bring their own snacks.
FinD Out mORe
To find a participating theater near you, go to www.autism-society.org/getinvolved/events/sensory-friendly-film or Google Sensory Friendly Films. For more on auditory hypersensitivity and other sensory issues please see Raising a Sensory Smart Child and visit www.sensorysmarts.com.

Keene, New Hampshire 800.552.8380 www.antiochne.edu

LEARN MORE TODAY

AUTISM SPECTRUM TRAINING

Earn your masters or certicate at Antioch University New England
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APPLIED BEHAVIOR ANALYSIS (ABA) CERTIFICATE. ABA is the primary treatment for autism. Become a board-certied behavior analyst (BCBA) or a board-certied assistant behavior analyst (BCaBA) in ve semesters. MEd or MA with a concentration in ASD or ABA.

AUTISM SPECTRUM DISORDERS CERTIFICATE. Improve your skills and learn strategies to work with people on the autism spectrum who have Aspergers, High Functioning Autism, or PDD-NOS in nine months. CONTINUING EDUCATION CLASSES are also available.

n n

AUNEs programs accommodate working professionals with weekend classes. Call 800.552.8380 or visit www.antiochne.edu/ap/asd for information.

16ThE WAy I SEE IT

Listen to the Heart of a Frog

Making the Leap to Love
hen I was little, I loved when Kermit the Frog sang Listen to the Heart of a Frog. Literally, he was trying to help kids to feel comfortable about going to the doctor. Metaphorically, he was saying to listen to your heart. I once heard someone say: There are no princes, only frogs. The girl chooses which frog to kiss, to turn him into a prince. And, I do feel like a frog...an autism frog. How do I tell a girl I like about my history with autism without scaring her off? One strategy Ive enlisted is to troll the Internet for lists of talented men who may have had autism1 who also had partnersEinstein, Mozart, Thomas Edison, maybe even Jim

Hensen, to name a few. But that hasnt quelled my fear. I listened to a TED talk recently by Temple Grandin2 where she made the point that humanity would still be sitting by the mouth of the cave if it werent for the caveman with autism who invented the spear. Ive listed my own accomplishments, but that hasnt quelled my fears either. Ive even thought of singing to her because Im told Im a talented singer. For months, Ive been secretly rehearsing Rodgers and Hammersteins Do I Love You Because Youre Beautiful? from Cinderella.

The perfect place to get together.

Recently, I met a graffiti artist. Who would marry a graffiti artist? There are so many negative associations about them, right? But this guy is a really talented artist. One day, he did what artists like him dohe painted on a wall, where the train passes by, a love message to his girl: T WILL YOU MERRY ME? I noticed that he didnt even spell marry correctly. But, she fell for him. He listened to his heart, applied his art and his talent in a creative way to win the girl of his dreams. What is a guy with autism to do? In the Sesame Street skit, the doctor says to Kermit, The sound of your heart is music to my ears. The way I see it, I think its time for me to listen to the heart of this frog and add myself to the list of human amphibians who win the kiss of the princess fair. So, I guess Ill sing her the song.

Click here to see a clip of Sam singing Do I Love You Because Youre Beautiful http://samrubinpictures.com/ do-i-love-you/

References 1 http://wiki.answers.com/Q/What_famous_people_ have_Asperger%27s_Syndrome 2 http://www.youtube.com/watch?v=fn_9f5x0f1Q

From relaxing hammocks to 14 places to eat and drink and a dedicated activities center for kids, TradeWinds has all you need for the perfect beach getaway. All rooms are non-smoking with refrigerator and microwave Newly remodeled rooms and suites at Island Grand and Guy Harvey Outpost Designated as an Autism-Friendly business Host hotel for National Autism Associations Annual Conference

JustLetGo.com/autismfriendly | 800.808.9834 | Floridas West Coast

is a 20-year-old actor, filmmaker, writer and vocalist. He is the author of And...Action! My TAKE on Autism (and Life), available on Kindle, and plays the character Rocket in The Rocket Family Chronicles (The Autism Channel). His new book, Heretic, is due out this Spring and he is in pre-production on a new film. He lives with his family in Oakland, California.

SAm EtHAN RUbIN...

2013 Ed Rubin

By SAm RUbIN

ThERApy, BEhAVIoR, AND LIFE SKILLS 17

Accentuate the Positive

Build upon the strengths of people with autism to develop personal ties and encourage social growth
By DA N L . EDmU N DS, ED.D.

he world of individuals with autism is often misunderstood; one may see the person apping his arms, viewing it as
DAN L. EDmUNDs, ED.D. ...

strange and in need of suppression. But if we look inwardly and explore the meaning behind this action, we may nd it is telling us something,

is an existential psychoanalyst, psychotherapist, and autism consultant in northeastern Pennsylvania. He completed undergraduate study at the University of Florida, earned a Master of Arts from the University of Scranton, and completed a Doctorate of Education in Community Counseling from Argosy University of Sarasota. Dr. Edmunds is a Diplomat of American Psychotherapy and the author of a book on autism acceptance and The Meeting of Two Persons: What Therapy Should Be. He has written many articles and has presented on radio, television, and at professional conferences. Dr. Edmunds website is at http://selfgrowth.com/ experts/dan_edmunds.html.

and is indicative of how that person feels. It is one of the few ways some individuals are able to share their experiences. If Im an American traveling to a foreign country and know nothing of the culture or language, Im bound to struggle. However, if Im an American and travel to a foreign country but have learned something of the language and culture, it will be far easier. This is the direction I believe that programs to aid people

Krzysztof Szkurlatowski; 12frames.eu

18ThERApy, BEhAVIoR, AND LIFE SKILLS

with autism should be geared, to help them have an understanding of the mainstream and be able to navigate through it.

Core Principles
In supporting people with autism, we must focus on these core principles: `` Presume Intellect Because a person is non-verbal or struggles in communication does not mean they are not intelligent or have nothing to say. We must explore and utilize the strengths and passions of the person. `` Understand Behavior as Communication We may be making a grave mistake when we simply seek to shut down or suppress what we judge to be unwanted behaviors. Behaviors, even those one may deem unwanted may be for some the only means to convey their needs or distress. `` Promote Self-Advocacy If we wish to understand individuals with autism, we must be willing to enter their world, not force them to enter our own. We must be willing to validate self-advocates and seek knowledge about their mode of being from those who actually live it each day. `` Build Relationships To help people with autism forge emotional connections, navigate through the mainstream, and learn new skills, the key is relationship. We must be willing to forge a bond with the person, to truly seek to understand their experience, their world, how they find meaning, to know them as a fellow human being. Once we forge a relationship, we can create a common healing ground. `` Maintain Respect It is necessary for respect to exist and this means as well that we do nothing to force, coerce, or manipulate the person. We regard them as a person worthy of dignity. Our role is to advocate and support, not seek to alter the person into something they are not nor need be.

Building Upon Strengths To effectively assist children on the spectrum, we must first realize that this requires a team effort and a strengths-based approach. It is necessary to not focus on what the child cannot do, but look at what the child can accomplish and build upon that. Parents can enlist the support of professionals but must realize that it is they who are the most important persons in the childs life. Furthering the development of their child is not just the work of professionals but is a collaborative effort from everyone involved with the child. It is necessary that for any support to truly be effective and helpful, that they must be consistent and constant. The support must be the same throughout all domains that the child is present in. It is crucial for us to understand the environmental responses that children have, whether they have developmental differences or even if they do not. If a teacher, parent, or other person has a hostile tone, a poor demeanor, a loud voice, etc., all of these things can be overwhelming to the child and can provoke a behavioral response. All behavior is purposeful and should be looked upon as so, even negative behaviors. Behaviors are a way of the child speaking to us about a distressing situation or an apparent need or desire when they may not be able to convey this to us verbally. Light, sound, and other sensory stimuli can also produce distress for a child. We need to create awareness of what in the environment may serve as triggers to distress and seek to modify these factors to make it a more comfortable and safe place for the child. We must also be cautious in how we view children. If we look at a child displaying negative behavior as a monster or feel that because a child may be rambunctious at times that we must automatically resort to medicating them, then we have taken a negative attitude that will surely be passed on to the child. Children are keenly awareeven those with communication strugglesof adults

perceptions of them. We should look at our childrens strengths and address behavioral difficulties not in terms of how we can subdue, but rather how we can meet needs, resolve conict, and remove distress. Integrating the social sphere The use of play and mirroring is of particular usefulness in working with children with communication and social struggles. For those children who are non-verbal, we can begin to introduce hand signals, moving to use of pictures, and then gradually encourage the child to make use of words or phrases to indicate desires. Its not important initially whether the verbalizations are correct but rather that a verbal attempt was made. When a child displays a behavior such as spinning objects, we should not be aversive, but rather gently introduce a new toy or object and seek to divert the child to a different activity. In situations of echolalia, we can say such things as, Thats TV talk, and use a hand signal to divert this to a different means of conversing. Its important to provide the child with understandable signals and meaningful statements and phrases. In order for children with autism to be able to integrate more into the social sphere, its necessary that they not be isolated into situations where they are labeled and shuffled away from their typically developing peers. Rather, they should be included as much as possible with these peers. They may need additional support and accommodations, but how will they begin to learn important skills unless they have frequent and continuous exposure to the world around them? Ive developed the use of what I term real life rehearsals, where we set up a particular social scenario for a child. It may be such a thing as being able to make a purchase at the grocery store. The therapist and parents guide and coach the child ahead of time on how to go about such an activity and then have them actually demonstrate it.

ThERApy, BEhAVIoR, AND LIFE SKILLS 19

Social narratives are very useful in conveying information as these children tend to be visual learners. Social narratives can be simply made booklets that the child helps to create where a particular task or scenario is outlined with what behaviors are expected. The social narrative is helpful in building empathic skills as well as reective thinking as we ask the child to develop captions for what different individuals may state and think in various situations. Practical applications I met with a ve-year-old non-verbal boy who came into the office and began banging his hands on the computer keyboard. The secretarys immediate response was to suppress that behavior and make it go away. Instead, I told her to let him go. We had a ball pit in the center of the room, and I told the boy that if he wanted to keep hitting the keyboard that I might have to pick him up and toss him in the ball pit. He continued, and I picked him up and tossed him in. He got out of the ball pit and walked back over to the keyboard. This time, he did not hit the keyboard but outstretched his hands toward it and then fell back into my arms for me to toss him in the ball pit. He giggled and laughed and then spoke the words, Do it again. I was amazed. Relationship was at the key of this interaction and an emotional connection was forged. I entered into his world, and he reciprocated and entered mine. Another child I worked with not only had autism but was also blind and had paralysis in his legs. When frustrated and overwhelmed, he often required a helmet because of headbanging. Many would dismiss any attempts to engage with him believing him to be too disabled or too troubling. But even here, there was work done in assessing his environment, seeking to alleviate those things that caused distress and overwhelm. And emotional connections were able to be made with him in spite of his
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It is necessary to not focus on what the child cannot do, but look at what the child can accomplish and build upon that.

challenges and differences. I let him take the lead, and he would at times grasp my hand and lead me through his house. In spite of his blindness, he knew his surroundings by touch. He enjoyed listening to music and he had one game he would play where he would cover himself with blankets and giggle. These were important emotional connections not to be ignored. One young man I worked with was 13 when we rst met. He had an unusual collection of about 50 or so Lamb Chop puppets. He would make videos and had various voices for each puppet. His family and others did not really understand the videos but as I watched them, I discovered that he was telling stories about his own experiences and challenges. He

also liked to make recordings where he would use clips from various movies. Sometimes he would create a game show where he would pretend people were calling a radio station to win a prize. He would use the various clips as the persons response to the radio announcer. I used to join with him in some of thishe actually had great talent and it was quite entertaining at times. However, some of these passions also made him awkward with his peer group so we set some parameters around when and where he would perform these activities. I realized we needed to channel this into something that would work for him. And thats exactly what we did: 10 years later, he graduated with a Masters degree in video production and I was very honored to have been a part of his journey. Last year, he made a documentary about our time together and his experiences, both the positives and the challenges of being who he is. In helping developmentally different children, its all about relationship. These children are within a realm where they feel and respond much differently than others. These children DO communicate; however, they are not always able to manipulate their senses to communicate in the typical ways of other children. As a result, they can become easily frustrated and trapped. Persons must enter their world and learn to communicate in their language.

20AgES & STAgES

Autism and the Community

Creating Naturalistic Connections
B y C H A N t A l S I c I le - K I R A

I need a circle of support to learn about life, and learning about how the rest of the world communicates to have social interaction. Friends are a necessary part of everyones circle of support. New friends and new places are hard to nd when you need a piece of technology to communicate.
Jeremy Sicile-Kira, A Full Life with Autism
round the holiday season, people in general are more aware of the social relationships and community connections that they haveor dont have! Many parents of children with autism joke that they become more religious during the holiday season that begins with Thanksgiving: they pray their child will behave while visiting relatives, and they pray their child wont hit the relative who tries to kiss him or her. Because of this annual reection on family and friendships, the start of the New Year is a good time to think of ways parents can create more naturalistic connections in the community for their child. Just like friendships, these connections are not built overnight. It is never too earlyor too lateto start building them. If your child has difficulties in initiating and establishing social relationships
passion for empowering others has led her to become an award-winning author of five books, a sought-after speaker, and a leader in the field of adolescence and transitioning to adulthood. She has been involved with autism for over 25 years as both a parent and a professional on both sides of the Atlantic. Chantal provides more information and training online at http://autismcollege.com/ about-autism-college/.

LEARNING THE ROPES Jeremy Sicilie-Kira finds volunteer work can be both fun and rewarding.

(and if he or she needs assistive technology to communicate), it is likely that your childs circles of supports are small and that they need expanding. My son Jeremy is 24, and loves painting and traveling. He also has autism, little verbal skill, lots of sensory challenges and communicates by typing. Ever since Jeremy could type he has made it clear he has wanted friends. In A Full Life with Autism (Macmillan, 2012) Jeremy and I discuss the importance of supports, each from our own perspective. Most of us neurotypicals have naturally been creating different circles of supports since birth. Weve been creating networks of people who connect with us on different levelssome who we are very close to, others who we are just acquainted with, some who are work colleagues we like but may not be particularly close to. Circles of supports Judith Snow, a woman with a signicant disability, explains it further and has described four different circles of relationships that everyone has in their lives: `` Circle of Intimacy: includes those with whom we share our secrets, have great intimacy and emotions.

CHANtAl SIcIle-KIRAs ...

These are people, animals and for some, objects, that are so important to us that their absence would impact us in a major way. Family members are usually included here, but not always. `` Circle of Friendship: includes those who are friends or relatives who we see occasionally for dinner or a movie, but are not our closest friends who we need to see on a regular basis. `` Circle of Participation: includes the organizations or people you participate with in your life such as your job, your place of worship, schools, organizationsplaces where you participate and interact with people. This circle contains people who may eventually be in circle two or even one. `` Circle of Exchange: includes the people who are paid to be in our lives such as therapists, doctors, teachers, haircutter and so on. Almost all neurotypicals or nondisabled people have a fair number of people in all four circles. However, those with disabilities and different abilitiesincluding autismhave practically all the people they know clustered into the Circle of Intimacy and the Circle of Exchange. Having only connections on these two levels

AgES & STAgES 21

helps create the emotional and nancial strain on the family that most of us parents of loved ones on the spectrum feel. What are needed are more connections to organizations and areas of interest (circle of participation) where there is the possibility of meeting people who eventually become friends (circle of friendship). This provides more quality of life for the individual by providing more relationships with people other than family and service providers. Expanding the circles of participation and friendship Many children and teens with autism do not naturally create circles of participation and circles of friendship. For someone like Jeremy, who needs a support person and uses assistive technology but does not easily initiate, its been challenging. In A Full Life with Autism, we described how we looked at Jeremys interestswriting, autism, painting and advocacyand focused on nding how he could meet people or get involved in organizations. Volunteering Volunteering in the community is a good way of creating connections (circle of participation). Its also a way for a young person to discover what hes good at or what he likes, to learn responsibility, and to give back to the community. The person also learns the enjoyment of giving and not just receiving. When Jeremy was 13 or 14, we decided it was time to try some kind of volunteering. We picked Meals on Wheels because Jeremy liked riding in the car, and he could ring the doorbell and hand over the packaged meals. The hardest part was that often the residents had bright decorations on their front doors it was a struggle for Jeremy not to put his hands on those. Next he started walking the dogs at a local pet store. This position served the dual purpose of helping out a harried shopkeeper and teaching

Jeremy how to hold a leash and walk a dog. This was helpful for when Jeremy nally got his assistance dog, Handsome. Then, he visited relatives and friends in hospitals and nursing homes. The staff and other patients love spending time with Handsome and Jeremy enjoys seeing how happy Handsome makes the people. Meanwhile, over the years as Jeremys written communication skills improved, he was asked to write articles about having autism. Over time,

Because of this annual reection on family and friendships, the start of the New Year is a good time to think of ways parents can create more naturalistic connections in the community for their child.

he decided that he wanted to become a writer and an advocate to help others. Then, after graduating from high school he was asked to become active in a few different autism organizations. Most recently, Jeremy began volunteering at the head lifeguard tower at a coastal town ve miles down the road. He loves walking on the beach and does so whenever he can. Jeremy wanted to give back somehow and now he helps out once a week for the days set-up. To read more about this experience click on this link.

Joining groups of similar interests Joining groups can be a crap shoot sometimes its a good t and sometimes its not. For example, while Jeremy was attending community college, he was on staff of the college newspaper, run by mostly volunteers. There were weekly group meetings, providing opportunities for interaction with others his own age. Then he joined a local non-prot writers association but this was not very benecial; the writers got together to write in the same space but on their own projects. Spirituality is important but nding an accepting place of worship and a good t can sometimes be challenging. It took us a while, but Jeremy has found a place where he feels accepted and enjoys the music and message. Additionally, in the last year, Jeremy discovered painting and this has provided another area of interest in which he can connect with other peopleslowly but surelythrough an art teacher, the San Diego art community, and other artists in the autism community. One big supporter of arts and the autism community is Debra Hosseini, author of The Art of Autism, who wrote this blogpost about Jeremy and his painting. To create circles of support and relationships takes time and effort, but its well worth it. These connections are what make the place you live in a community.
FinD Out mORe
For more information on A Full Life with Autism (Macmillan, 2012), go to www.AutismCollege.com

22NAA CoNFERENcE

www.sxc.hu

Thats the Spirit!

Holidays Gently Push ASD Parents Toward Spiritual Growth
B y C H R I S t I N A A D A m S , M FA

egular parents might need holidays to kick off their painful but spiritually uplifting step in our own growth. spiritual feelings, but having an ASD child is a spiri- Accepting our childs autism can free us to give himand tual awakening unto itself. At the shopping mall, ourselvesthe peaceful holiday of our choosing. were greeted not just by Santas While formal religions arent elves, but the Great Existential for everyone, most spiritual Questions of Autism, like, why traditions offer ways to accept am I buying sports gear for a and endure ones lot in life. kid who throws himself at on Although no parent encounters Acceptance and endurance are the grass during soccer games? most denitely needed for auWhy does my daughter want tism parenting, as Rain Man suffering joyfully, by seeking the same stuffed pink kitty every would say. I was raised nomiyear? Did my son really just bite nally Baptist in the American Santas boot? If we leave quickly, south, and my Freewill Baptist spiritual and commonsense will I have to pay for it? great-great-aunt was a train-ridWh ile Gre at E x i stent i a l ing circuit preacher. Long ago Questions always have more our family donated the land for wisdom, we can identify and t h a n one a n swer, t hey e sthe pretty Appalachian church sentially deal with spiritual still known as Wilsons Chapel. lessen our familys suffering. wisdom. Having a child who My people endured all kinds prefers the wrapping paper to of hardships with almost no the present can offer a terribly complaint and I dont recall any

AUTISM AND SpIRITUALITy 23

The Crushing Glare of Santa Claus

Choosing Happiness over Tradition

praying, either. Still, my mother, a curious teen who saw pastors cryin and shoutin while taking up serpents at the local snake-handling church (her only visit), took my sisters and me to archeology meetings and fossil hunts. This inclusive, self-reliant environment didnt cause or prevent me from knowing at age ve that Id never pledge my troth to a single spiritual rationale. So I began to read about the worlds religions and cultures, while enjoying the deviled eggs at my grandmas church suppers. That background served me well when my son was diagnosed. I was mad at deities I didnt worship, yet I found meaning in history and science, as well as Judeo-Christian, Zen and nature philosophies. My shaky brain/soul sought wisdom and beauty, ritual and comfort everywhere. Now that Ive been in the autism world for over 13 years, Ive seen people from every belief system manifest a need to accept and endure autismand to celebrate the joys of spectrum life. Unconditional compassion Buddhist teacher Dzigar Kongtrul writes that in Tibetan culture, a big heart means generosity, kindness and compassion, but also the ability to hold very painful truths inside without becoming despondent. During difficult times my mother used to say, You need to make your heart big enough to hold a horse race inside. This is the unconditional compassion we try to cultivate. It means that, having seen the true nature of suffering, we have the courage to encounter suffering joyfully. Several ASD families are doing just that with great success. Although no parent encounters suffering joyfully, by seeking spiritual and commonsense wisdom, we can identify and lessen our familys suffering. Our nine-year-old twin boys have many challenges, along with Aspergers and ADHD, plus theyre highly gifted, reports Jack Russell, a research scientist whos now a homeschooling dad. After his once-premature kids were diagnosed, he realized his growing anger would cause himself and others to suffer if he didnt nd a new way to cope and change his attitude. So he studied Buddhism, has a daily meditation practice and developed a compassionate and vegetarian lifestyle. We now focus on what they can do, as opposed to what they cant, he says. Because the twins cant yet attend a Christmas Eve church service, eat dinner at the big table with their families, open presents or play with cousins, watching the younger nieces and nephews do those things makes it harder for Jack and his wife. So weve started to spend some holidays alone, he says. Last Christmas we didnt travel. For New Years we went snow tubing and stayed at a Massachusetts cabin. And we were happy. We will continue to try to be with family, but weve been putting together a new kind of life. Its not normal but its becoming kind of awesome at the same time.

Growing up, I was a big believer in Santa Claus. Even after my sister showed me where all our presents were hidden before Christmas, I still found a way to believe. Likewise, my wife is a lover of all things Christmas. However, for one of our boys, the experience of Santa was quite different. A bundle of energy and anxiety, his world consists of black and white. Like most kids, he had a large Christmas wish list of things he was desperate to have. Slowly, excitement over the holidays turned to dread as he began to contemplate the implications of Santas Naughty List. Despite all reassurances to the contrary, his daily experience in school was that he was naughty. He was in trouble on a neardaily basis, sometimes catastrophically so. His logical mind was telling him hed be getting coal. He even started researching how to turn coal into diamonds. Eventually, rather than try and fail, he began a steady program of deliberate self-destruction. Better he lose it on his own terms than have Santa rip it away from him on Christmas morning. So last November, when he was still just eight and very much a believer, we made the decision to tell him the truth. It went against everything I felt about the Christmas Spirit, but as a parent sometimes you end up doing things you dont expect. The sense of peace and relief that overcame him was visible and it still nearly brings me to tears to recall it. Likewise, you could see him quickly work through all the logical inconsistencies Santa represented. As if theyd been nagging him for years (which in fact they probably were), he ticked them off one by one: I always wondered why they said Santa was so nice, yet he didnt bring gifts to Jewish children and that seemed mean. Thats why some toys Santa brought were Toys R Us exclusives. Youre the one that bought the Harry Potter game for the wrong game system. I didnt think Santa could make a mistake that dumb. Even though Ill miss Santa, I can now say with great relief that well head into this Christmas season without his menacing presence looming over our heads, sitting in fierce and unalterable judgment.

JAck RUssell...

is the father of nine-year-old twin boys with ASD andADHD. Following a career in biotech, he currently homeschools the twins. Hes obtaining a Masters Degree in Education in hope of finding ways to help children in school. He and his wife Becky live in New York.

24AUTISM AND SpIRITUALITy

A balancing act cope by having a mediation or Another family balances ASD prayer place at home. Keeping a with long-held religious trafamily calm and happy can be ditions. Our life is revolving done by slowing life down and around Youssef, says Egyptian developing emotional hygiene. maxillofacial surgeon Mohamed With a little bit of Feng Shui, Faramawey. He and his wife little bit of quantum physics, keep Youssef, age 4, busy during you can make a well-grounded holidays; otherwise, he starts to dwelling, and include your own develop his autistic charactersleep sanctuary. istics. Along with their typical First, she advises, nothing two-year-old daughter Fatima, should be plugged in at night they play blocks, do art and in the bedroom. Minimizing swimming, jumping and singing electromagnetic frequencies together. is good because its hard for On the Muslim holiday Eid the mind to calm when bomal-Adha, when a sheep or cow barded by EMF. Smart phones is sacriced and split with relashould be put in airplane mode He taught me the actual tives and the less fortunate, to block reception before turnthey took Youssef to pray in the ing off, and cordless phones meaning of the word faith; morning. He shared with us in are unplugged. Turning off giving meat to poor people. We the electrical breaker to the how to be patient and strong. told him God will be happy and bedroom at night can reduce love him because he is helping electric noise. While you can And he taught me how to poor people. We took him to visit get used to noises from the his grandparents and relatives to fridge and other appliances, work hard and create know the meaning of big family that noise can come through and feel the family warmth. walls and some kids and adults hope for myself. Such closeness may have been can hear it, she says. enhanced by Youssefs diagnosis. Her ideal bed placement is Mohamed says, We had very away from all walls, with the hard times as parents and felt like head at the north. She prefers digging in the rocks or walking in a dark tunnel. We needed platform beds made of unnished furniture, or rubbed with anybody to help us or give us a hand. Our son taught me natural Danish oil, to avoid off-gassing from painted metals. that family is rst priority; a strong bond is more important During holidays, off-gassing adds to the overall stress, so than work and everything; he taught me how to take care get green foam or cotton mattresses. Natural latex is ok, of my family, how to take the responsibility and dont hide or a wool-encased mattress offers a natural ame retardant my head into sand. He taught me the actual meaning of the choice that doesnt need a doctors prescription and is resisword faith; how to be patient and strong. And he taught me tant to dust mites and moisture. And use visually plain white how to work hard and create hope for myself. or beige sheets of cotton or bamboo. That grounded environment, she adds, is spiritually uplifting for anyone in it. Soothing body and soul The kids bedrooms should get makeovers so they All this wonderful evolution and nurturing should be sleep better and stay in their rooms. Reduce kids visual balanced with good health practices. Dr. Jodie Dashore is and sensory exposure during the holidays by putting toys a board-certied OT and holds a masters degree in pedi- in containers at night. Her family slips on their no-ameatric neurology. She runs a practice serving ASD kids in retardant pajamas and lets the good times roll. We watch New Jersey, but shes also the parent of a bright child with funny movieshappiness is a big boost to the immune Aspergers and health challenges. Of part-Indian heritage, system and kids with ASD have immune issues that are she follows the Vedas. She paraphrases one Vedic principle impacted by stress. she nds helpful for parents: Do your duty as a parent, Jodies final pointers? Exercise to the point of exbecause that is what you are and should be. Dont expect hilaration, not exhaustion. Have more sex and intimacy anything from your kid and you will achieve your destiny. in this calm peaceful environment. Get a babysitter and Nothing comes before it is time to happen. spend time away from the kids, especially if they have isWhile fasting, drowning in incense, is not my thing, sues. Take your vitamin C to calm holiday stress-related says Jodie, I have a small temple in my house. Some families inammation. And if its not too cold, walking barefoot

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SUMMAUTISM AND SpIRITUALITy 25

Jodie Dashores Holiday

`` 1 cup of Epsom salt (2 cups for adults) `` 1 cup baking soda (making body alkaline)

Detox Bath

`` 5 drops each of ginger (detox) and lavender (calming) essential oils. For aches and pains, add rosemary essential oil. For coughs and colds add eucalyptus essential oil. For kids under 12, use only 2 drops each.

Add to tub of warm, not hot, water. Add bubble bath if desired.  Stay in bath no longer than 20 minutes for adults, 10-15 minutes for
kids. Then shower it off.

 Drink water and electrolytes like Emergen-C before and after bath
to avoid a detox reaction like feeling dizzy and dehydrated. Excessive sweating and flushed skin are normal signs of detox occurring.
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on the earth discharges negative ions and gains positive EMFs from the eartha technique that helped one child decrease his motor tics. Unexpected blessings While this path may sound more exotic than Mandie Winberrys, a self-described Christian truckers gal and mom of three boys with autism, the holidays also help her achieve family happiness. Mandies boys are eight, nine, and 10. The youngest two are still nonverbal and in diapers, while the eldest has Aspergers and ADHD. The Horn Lake, Mississippi mom reports her devastating depression when her boys were diagnosed. She was still learning all the strange and destructive things that can come with autism when she felt drawn to a Christian radio station she stumbled across one sad day. Afraid to tackle church with the kids, she watched television preachers during their school time, and later found a church that welcomed the boys. My family hasnt spent much time with my sons or me, says Mandie. My ex-husbands family, with the exception of his father, spent little time with them either. The boys never seemed to notice. But in 2011, God sent me a blessing I never saw coming. Mandie reunited with her rst love and the boys were right at home in the blended household, hugging the new relatives from day one. We had Christmas dinner at my ances mothers home and the boys really surprised me at how well they did. It was our best Christmas ever. While the oldest boy gets ageappropriate toys, the other two often break their toys made for younger kids, and New Years Eve goes by without them noticing. Still, she spends time listening to the station that He used to lead me back to Himself, singing along in praise. If I get lazy in those things, my joy begins to fade and I get weak. Like Jack, Mohamed and Jodie, she believes its hard to be down when youre grateful for what you have.

Lead with your spirit I suggest being a close listener to your own spirit this holiday. Ask your inner self what you and the kids need, and listen quietly, no matter how small or crazy the answers sound. Then reserve one or two empty spaces of time in the holidays for your sacred activitiescomplete with your deity or none at all. Use old and new items or traditions that appeal to you. Some popular elements are: talk; prayer; literature and music; meditation and stress relief techniques; spiritual and religious services like sacraments, memorials and custom rituals; support for grief and difficult times; and support from faith leaders and health care providers. Every sacred time, even if its in a truck cab or a front porch patch of sun, lets you cherish where you are in the moment, take stock without fear, and seek the joy of simply being alive. Just as each person with autism is unique, so are we all. Like the whorl of a cowlick over a boys freckled face, or the abnormally strong handshake of your ex-military father-in-law, your spiritual thumbprint leaves an impression on this world. When you savor these one-ofa-kind moments, you can better release expectations and regrets about what might have been. Perhaps others might respond to your peaceful acceptance of life, and escape holiday tensions by joining you. Have a glass of milk and some warm cookies, if that does it for you. Its your family and your life. Lead with your spirit and your head and heart will surely follow.
FinD Out mORe
For more about the spiritual needs of people with ASD: Autism and the God Connection www.williamstillman.com/autism-asperger-books.php Autism and Spirituality www.jkp.com/catalogue/author/1078

26ART AND CREATIVITy 26

Autism Takes a Bow

New opera reects upon the epic heros journey that is life on the spectrum
B y S A lly P A R k R U b I N

he name of the opera youre always at the mercy of Samlandia: A Gondola stormy weather. Lets get him Ride Through Love and talking. Lets get him holding a Out of Autism evokes many pencil. Lets... you name it. In images, one being a placid gonour case, because of the nandola ride through, as the play cial toll that autism took on calls it, a sensory sea of love. But, our family, I was always lookfor Sam Rubin and his faming for out-of-the-box ways ily, as with all families with to educate Sam, to make the a child with special needs, it world relevant for him, to conhasnt been smooth sailing. nect the dots. And, because Still, as Sam (who plays these kids get therapized to Rocket in the internet TV sedeath, we just needed to nd ries The Rocket Family Chronicles) ways to lighten things up so says, When youve been givthat every day wasnt about en a lemon, make lemonade. school and therapy. Autisms my lemon. Diagnosed For example, Sam wasnt with high-functioning auunderstanding the concept of tism at age three years seven dialogue. Once he started to months, Sams parents did what REAPING REWARDS Sam receiving the Target Dream in talk, he had it wired up that every parent does when autism Color Award at the LA Film Festival for directing Lipstick, a if Im talking, only I talk. moves in with them, they got student film about gender identity. If hes talking, only he talks. to work dealing with the many And we were unable to undo layers of illness associated with this habit in Speech Therapy. it and the many facets of developmental systems-failure So, we put him in a youth acting class where they enacted caused by an underlying systemic autoimmune disorder. By commercials. Child A says a line. Child B responds, back age thirteen, Sam was, more or less, back on-line and making and forth between A and B. That did the trick. But, more up for time lost in development. But, of course, making up for than that, we discovered that we had an actor on our lost time includes numerous fronts: reading, writing, learning hands. So, I let him try out for Tiny Tim in a production of the ropes of the social-emotional landscape and, in Sams case, Dickens A Christmas Carol that theatre director Clay David dealing with math dyscalculia. was directing and producing at a local community college. Sam got the role. And since that time, its been all about Staying afloat acting and singing. Clay cast him in several of his plays and As weve all experienced, autisms like a boat. You keep helped Sam to get an internship at age thirteen at the New throwing money at it just to keep the person affected with Conservatory Theatre in San Francisco. Earlier, in a chance it aoat. Its always about the next little milestone and meeting while on a visit to a developmental eye specialist in

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ART AND CREATIVITy 27

Taking the Stage Clay David as Valier and Sam Rubin as Sam in Samlandia

GAS MASK CLOWNFrom Scene One of Samlandia

Washington D.C., Sam met actor Bradley Whitford. Sam, at that time, a devoted follower of The West Wing TV drama, was inspired by Brad. They became friends. Brad invited Sam to the set of the show and the die was cast. And one more thing: Sams dad and I have been in animation and video production for our careers. So, Sams always been exposed to cameras and editing equipment. He cant remember when he didnt have a camera to his eye. Sams education has been a hybrid of stage and lm, both in front of the camera and behind it, participating in San Franciscos Film Workshop for Teens in which he wrote, directed, and shot several short lms which have shown at festivals from LA to Milan and have won Sam the Targets Dream in Color award at the Los Angeles Film Festival for directing when he was fteen. Finding Samlandia Fast forward to high school graduation. Now what? After the grueling experience of getting through high school, we decided that Sam should take a GAP year. He kept up with acting through classes at Berkeley Repertory Theatre, studied Italian, German, classical vocal singing, and piano. It went so well, we decided to do a second GAP year. And it was during this time that he and Clay David, a former Broadway actor himself, conceived the idea of Samlandia. Clay got together with Sam to do a brain dump of ideas (Sams brain) which coalesced into the eight scenes for Samlandia, an operatic and theatrical experience which takes the audience on a trip from the depths of the isolation of autism through the tricky maze of special education, ending

in the heros journey and Sam nding his footing as an independent, capable young man in the world. Why Samlandia? Because our kids are heroes and this story represents one possible and hopeful conclusion for the epic heros journey that autism is. Clay David, himself, is the brother of someone with special needs. So, Clay understands in his bones the intricacies of navigating the world when a childs or siblings situation demands it. In addition to directing Samlandia, Clay plays Valier, the adult caretaker who represents parent, helper, and teacher. Cue the music The lyrics, written by Sam, Clay and Sally, are jauntily supported by a prolic and uid musical score. Among the cadre of composers working on the score is Sam, whose compositions, inspired by such composers as Legiti and John Cage, include sounds from machines and the natural landscape, something that people on the autism spectrum dont naturally lter out; that, as Sam says, People with sensitive ears hear as part of everyday music. Sams compositions are haunting and dissonant, providing both overture, songs, and an underscore that carries the show forward through the various moods evoked along the journey. Sam has a genetic gift called perfect pitch. (See sidebar.) His Cinq Niveaux de Tristesse, for example, plays under a scene entitled Silkworm when he sings, This is my journey of journeys / Through the eye of the needle / Along the walls of a sensory sea / And what Im quietly yearning / Is to have it (all) make sense to me. Then, when Doctor Neuroticus comes on, he and Valier

28ART AND CREATIVITy

norms conflict with multiple intelligences on either end of the Bell Curve. The play moves on to enact a scene from Sams life where a well-meaningbut misguidedteacher attempts to condition him to the sound of the school bell. Here, Valier (Sams helper) enters, with some ear muffs to muffle the excruciating sound. Try a little kindness, says Valier. And, What Samlandia soon, he and Sam are off on the rst of two gondola rides to the opera. Clay David, a seasoned director and does for audiences, set designer, has crafted a multi-media design incorporating small besides bringing them minimalist props and the actors body to convey the myriad locations on the odyssey through an autism that Sam and Valier take together. In one scene entitled For Just a Moment / journey, is to convey Pieta, Valier sings a Sondheim-style song beseeching God for hope: Im just asking for a small moment. / Just a little eclipse. / hope, because every So that I know that my child will be okay / in parentregardless of this moment. / In this world. / If you would just give me just that, God, /it will ll me to hope for other moments. whether the child has enough In this scene, Sam spins on stage wrapped in a kind of plastic-like fabric, special needs or not making him into a cocoon. He lands in the lap of Valier who holds and rocks wants to know that him like a little child. Valier declares to God, Im going to break through / that his or her child will be membrane / and I am going to engage / with this child. // I need to breathe with him / this child / my son / our children all // We need okay in the world. to breathe together.... In real life, Sams hobby is collecting natural soundscapes which Clay has employed as an element in the show More than just autism that, though simply staged, also includes multi-media visuSamlandia opens with Gas Mask Clown, a choreographed piece al images created by Sam for the backdrop to the set-pieces. that Sam conceived in a class meant to discover ones inner What Samlandia does for audiences, besides bringing clown. Though his parents capitalized on laughter and play- them through an autism journey, is to convey hope, because ing as a means to reach Sam when he was in the depths of his every parentregardless of whether the child has special autism (and Sam is one of the most playful persons youll ever needs or notwants to know that his or her child will meet), in the process of seeking his inner clown, Sam discov- be okay in the world. And, because autism is a marathon, ered that hes the guy who uses humor as a strategy to connect Sams odyssey ranges from descending into Hades to rescue with others but, who, in the end, nds himself existentially Persephonethe classical deep dive into the dark recesses alone in a box called autism, yearning to connect. As do we of the inner self to achieve the rite of rebirthto taking us all, which speaks to the power of the opera. Its about more on a ride from the Oakland Rockridge train station into San than just autism. Its about the rippling effect of how societal Francisco to attend a Meisner acting class. Once there, hes

sing a kind of Gilbert and Sullivan meets Bernsteins Candide: Let us review / What exactly is normal? / Please pardon me / If I sound formal // Normal is conditional / a cultural cognitional ...should I say // I dont mean to be pontical / but beliefs are quite volitional ...if you know what I mean // And theory-of-mind / can be quite unkind. (spoken) ...and blind, in its own way. As Sam describes it, Music follows me everywhere. I have symphonies on the brain. In addition to all this, Sam has always had a beautiful singing voice. He sang with the Pacific Boychoir when he was younger. And Clay often utilized him as harmonies captain for his theatrical productions. In the last four years, hes studied Bel Canto classical singing in San Francisco with Peter Maleitzke, a former musical director for the American Conservatory Theatre. Last May, Sam qualied for Classical Singers national vocal competition in Boston. He competed against college-aged students, enrolled in music programs, studying five days a week at such prestigious schools as New England Conservatory and Julliard. During the competition, classes were offered about the business of being in opera. Professionals from the opera world made the point that even if you have a pedigree education, you still will need to create your own success. When Sam heard this, he said, Lets write an opera. Like NOW! And thus, the seed for Samlandia was planted.

Bigstock

ART AND CREATIVITy 29

Perfect Pitch
When it comes to autism, as a mother in this situation, Im always looking for whats working. And I try to support that. I recognized early on that my son was attuned to the musical aspect of the world. In fact, before his language came on-line, it seemed that he could hear me when I sang to him, but not LONG TIME TEAMWORK Sam Rubin then (age 6) and (right) now (age 20) learns to play when I spoke the same words. It was piano with Susan Rancer, RMT. curious to me. But it was explained to me by Dr. Darrold Treffert that a different serves mostly the autism population. Most of her students also part of my childs brain was activated by music over language. have perfect pitch. She has developed a reliable system for testSam was able to identify the pitch of something with abing for it. She, too, is a perfect-pitcher. And, although Susan has solute recall, even after not hearing the piece for years. I didnt a degree in music, she reports that she struggled with learning know that this ability had a name; its called perfect pitch (aka issues through schoollearning issues that go along with perabsolute pitch). It operates like a tape-recording for sound in fect pitchwhich she describes in her booklet on the topic. the brain. In scientific literature, perfect pitch is observed to run The misperception about autism and musical ability is that in families and to affect about 1:10,000, with a higher incidence you can have a kid with learning challenges who is very likely in people who speak tonal languages such as Chinese. to shine in musical or artistic ability. It comes down to wiring Perfect pitch is a specific difference in brain wiring that and what motivates the student to learn. With an educational attunes that persons auditory perception towards absolute paradigm that excludes musical and artistic education, young recall of a pitch as it was first heard without the aid of a refpeople who might otherwise be perceived for this cerebral erence pitch. In practice, perfect pitch is such a dominant auditory mechanism that it causes the student to shut off his brilliance are often missed. They simply dont get the opportunity to demonstrate competence in an area where things eyes when, for example, playing the piano. come easily to them. In essence, once the musical piece is in the brain, the Unlike school, which caused my son to be completely oversound takes over and the student plays along with what whelmed with anxiety, when it came to going to music therapy, hes hearing in his brain, as opposed to reading the notes on he ran through the door to the lesson. And it was difficult to drag the page. This is why, for example, traditional piano teachhim away when the next student arrived. I cant say that learning ing doesnt work for perfect-pitchers. It is imperative to get to play the piano has been a cake walk for him because of the the student to read the piece visually before he ever hears it. visual-auditory tug-of-war that perfect pitch causes. But, he has Once he hears it, the auditory system competes heavily with learned to work with both the positive and negative aspects of the visual systemand almost always wins. his perfect pitch wiring. And this has generalized over to reading You can recognize perfect pitch if the student loses track of and other tasks that demand his visual attention. where he is on the page, drops his head while playing, rushes That music has been such a joyful and successful learning through the piece, and looks away when improvising. When format for him gave our family so much hope for him and for my son was little, we were lucky to find Susan Rancer, a reghis future. istered music therapist in Oakland/Piedmont, California who

invited to leave because hes too honest about his crush on a married woman, about which Valier reminds him, Most men dont have the guts to be so honest, so real. An operatic journey By the end of Samlandia, through eight scenes and seven songs, youve been on an operatic journey of epic and vaudevillian proportions. Youve experienced pain, love, triumphsall that it takes to move mountains...for just one child. But it isnt about one child. Its about all our children, regardless of where they are on their developmental trajectory. And it isnt just about Valier, a devoted caretaker. Its about all the caretakers, from parent to grandparent, teacher to helper. And its about the world of a child behind a wall who grows to become a young man nding his way with his heart full of hope for a full life.

Whether you identify with being on the Spectrum or whether you identify with being neuro-typical, there is something in Samlandia for you. Sam says, My goal for the show was to create an adventure to help people understand that someone with autism isnt just a label. If you label someone, you are essentially dismissing that person for who they are. You have to start with the heart and work your way out from there. No matter what, we are love. And that is the starting point for any meaningful connection.
FinD Out mORe
Samlandia opens in early Spring, 2014 in the San Francisco Bay Area. To find out more, visit http://www.samlandia.com

Reaching New Heights

Summiting Mt. Kilimanjaro boosts self-esteem while raising funds for families affected by autism
B y C H R I S M I tc H ell

MINDFULNESS 31

its easy to get lost in the goal of completing the challenge, rather than focusing on whats involved in the challenge itself.

eing diagnosed with Aspergers Syndrome can present challenges, but challenges are what often make life interesting. As a person with Aspergers Syndrome (AS), Ive found that facing up to challenges outside my comfort zone helps me cope with difficulties including stress and anxiety. Engaging in mindfulness practice exercises has been extremely helpful in allowing me to meet challenges such as taking on mountain treks. Contributing through challenge Over the years, Ive found that using my experiences of coping with Aspergers to help others through delivering training and workshops not only gives me a strong sense of contribution, but also increases my self-esteem. I started to bring this sense of contribution to help enrich lives of individuals and families affected by autism through sponsored mountain treks, including my most recentand most ambitiouschallenge to date, summiting Africas highest peak, Kilimanjaro.

The summit of Kilimanjaro stands at 5985 meters (19,341ft.), making it the largest free-standing mountain in the world. For me, the motivation to undertake such a daunting venture is a combination of knowing the experience will be personally rewarding, and realizing that people and families affected by autism back at home will be supported through the Daisy Chain project in the UK. Prior to the Kilimanjaro climb, my highest trek was at Kala Patthar, in the environs of Everest Base Camp in Nepal, at a height of 5,550 meters (18,209 ft). The conditions on Kilimanjaro where I would be camping during the trekincluding rainforests and extreme changes in temperature and altitudealso presented new challenges for me. Levelling the field From the start, one aspect of the Kilimanjaro experience that I felt put me level with the others in my trekking group and enabled me to interact with them, was the rugged nature of the challenge. If all 12 of us were to succeed

32MINDFULNESS

in reaching the summitin a one-week time framewed all need to cope with three key aspects of the challenge: `` Being physically fit enough to undertake such a challenge `` Coping with high altitude `` Surviving in a camp environment without conveniences such as electricity and running water.

Regarding how I am affected by AS, the two biggest challenges of the camping aspect were sharing tents with people Id never previously met, and coping with frequent and unpredictable changes in weather and climate. Though I felt that in previous treks Id coped reasonably well with unstable conditions, those I experienced on Kilimanjaros Lemosho Glades route were more extreme, ranging from daytime temperatures of over 30 degrees centigrade (86 degrees Fahrenheit) to as low as minus 10 (14 degrees Fahrenheit) at night. Weather ranged from bright The 300m Baranco WallWhile it appears sunshine to heavy rain while as an almost vertical wall, it becomes more like a trekking for up to seven hours per staircase while ascending it. day, though there was a shorter acclimatization day in between to help get used to the high altitude. Another aspect of Aspergers Syndrome that this challenge helped me to cope withjust by facing up to it each daywas dealing with worry and doubt. The huge variation in micro-climate conditions that Kilimanjaro itself creates presents a new challenge to trekkers every day. Similarly, being diagnosed with AS can present different challenges every day, especially in situations outside ones comfort zone. People diagnosed with AS often become uncomfortable in rst-time situations, worrying that they may not know how to conduct themselves or how to respond to others. Social cues and physical gestures on the part of others can be particularly tricky. Whereas this often comes intuitively to people not on the autism spectrum, the rules are unwritten and for me, knowing how to behave socially has often come from careful observation. Looking on the bright side Such careful observation and attention to detail on a trek can help in organizing and preparing whats needed to cope with diverse conditions. Being able to anticipate changes in weather and terrain, and being

MINDFULNESS 33

prepared with the necessary clothing and equipment to cope with those changes, are both critically important for a successful trek. In this way, I found that the strengths Aspergers Syndrome can present helped me make it through the challenge. At the start of each day during the trek, I did notice some feelings of anxiety. Not only did I wonder whether or not I could complete the distance I was to trek, but the height I was to ascend was also of concern. Additionally, I had some insecurity as to whether or not I would experience altitude sickness or sustain a physical injury, always a possibility for any trekker. These types of concerns provided a good opportunity to practice and apply mindfulness. From previous treks and from participating in the 2012 Great North Run, the worlds biggest half-marathon, something that Id noticed came to mind during the Kilimanjaro climb. When setting out on any kind of challenge, its easy to get lost in the goal of completing the challenge, rather than focusing on whats involved in the challenge itself. Becoming lost in the goal can be a factor in inducing anxiety when one becomes constrained by doubt. Bringing awareness both mentally and physically to each moment and each stage of the trek enabled me to change my relationship with such doubt. As a result, I was able to progress without being too hindered psychologically, including the ascension of the 300 meter Baranco Wall. Sensory challenges During the entire Kilimanjaro trek, there were multisensory experiences to manage and cope with. Sensory difficulties are frequently factors for people with autism and they vary from individual to individual. In addition to the avoidance of certain tastes and textures, sensory preferences for certain touch and feel sensationsincluding clothing materialcan be a comfort. This can be a problem is if one has a preference for certain clothing that may not be right for particular weather conditions, and he or she may nd clothing more appropriate for harsh weather conditions uncomfortable (e.g. wool, eece). Though I dont experience excess sensory issues, it is sometimes difficult for me to cope with variation in sensory experiences from adjusting clothing to accommodate varying weather conditions, including the degree of layering required. Reaching the summit After seven days of trekking, we reached Barafu Hut, from where we would begin the ascent to the
Roughing ItCope with challenges outside the comfort zone by facing up to them.

34

Changing our relationship with factors such as doubt, worry and anxiety can open us up to untapped strengths and qualities, including physical capabilities.

summit at Uhuru peak. This meant going from 4650 meters to 5895 meters, at midnight, and in temperatures lower than minus 10! Initially, this was a huge step outside my comfort zone as I had never done a trek in darkness before. However, the darkness actually worked in my favour as I couldnt see the height and distance I was to trek ahead of me. As I had to be more careful about where I was stepping in the dark, it enabled me to concentrate on each step rather than worrying too much about the ascent ahead. When day broke and I trekked towards the summit, I felt a huge amount of relief as well as a sense of achievement. With this, I also felt sensory extremes of being dressed in up to six layers to cope with freezing temperatures which started to toast me when the sun rose as I reached the summit! The descent from Kilimanjaro required as much care as the climb up the mountain, and coping with temperature changes was just as great a factor. This and other challenges I have completed have shown me that sometimes worry and anxiety can cause people with Aspergers Syndrome to not realize what theyre capable of achieving. Changing our relationship with factors such as doubt, worry and anxiety can open us up to untapped strengths and qualities, including physical capabilities. This is something I hope to carry over into my everyday life; mindfully opening up to the different daily challenges life brings is the best way Ive found to cope with them.

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36BIoMEDIcAL UpDATE

Autism and Mold Toxicity

Although the symptoms they create are treatable, these biotoxins can exacerbate autism traits and wreak havoc on health
By KeItH BeRNDtSoN, MD

n a 2009 study, Jack Thrasher and colleagues compared neuropsychological abnormalities in eight autism spectrum disorder (ASD) boys to six ASD boys who were also exposed to mold toxins. The ASD boys averaged 6.8 abnormalities. The ASD boys who were also mold toxin-exposed averaged 12.2 abnormalities. While not a scientic investigation, this simple observation suggests that boys on the spectrum with toxic mold exposure may average nearly twice the neuropsychiatric abnormalities as ASD boys without exposure to mold toxin. Should this matter to parents of children with autism? The answer is yes because mold toxicity is treatable. Subtracting mold toxicity from an already complex illness equation like ASD holds potential to improve

Subtracting mold toxicity from an already complex illness equation like ASD holds potential to improve function and quality of life for people with autism and their families.

function and quality of life for people with autism and their families. Since mold toxicity is not gender-specific, the benets would accrue to both boys and girls who suffer from ASD and this treatable condition. A Newly Discovered Form of Chronic Illness For the past 15 years, a steady stream of research by Ritchie Shoemaker and colleagues of the Maryland-based Center for Research on BiotoxinAssociated Illness have documented the causes, diagnosis, and treatment of a new chronic medical condition called Chronic Inammatory Response Syndrome, also known as CIRS. A biotoxin is a toxin made by a living thing as opposed to a man-made chemical process. Of all patients with CIRS,

www.sxc.hu

BIoMEDIcAL UpDATE 37

Diagnostic Criteria for Mold Toxicity Syndrome (CIRS-WDB)

A Multi-Symptom, Multi-System Illness In an early study by Shoemaker, CIRS sufferers averaged 22 of 37 symptoms, whereas controls averaged only 3 of 37 symptoms. Many of these symptoms suggest neuropsychiatric or neurocognitive problems. Visual Contrast Sensitivity Many mold toxins are documented neurotoxins, some of which also act as mitochondrial poisons. Shoemaker and Ked Hudnell documented that over 90% of patients with CIRS fail visual contrast sensitivity (VSC) testing in one or both eyes. Studies conducted through the Department of Defense have shown that the visual function for edge detection, also known as contrast sensitivity, is reduced by exposure to neurotoxins. Shoemaker and Hudnell showed that treatment lowers the neurotoxic burden enough for visual contrast sensitivity to become normal again. Genetic Susceptibilities

www.sxc.hu

TOXIC RELEASEAspergillus versicolor releasing toxin-containing spores.

an estimated 80 percent suffer multiple symptoms caused by biotoxins produced by certain molds known to grow in water-damaged buildings (WDB). When CIRS markers are present and the suspected source of toxin exposure is, or was, a water-damaged building, the condition is called CIRS-WDB, also known as mold toxicity syndrome. Part of the problem for such patients is that they do not clear mold toxins from their bodies as well as most of the population. For this reason, when making the diagnosis of CIRS-WDB, it doesnt matter whether the exposure to mold toxins occurred in the present or in the past. Since the toxins are so poorly cleared, the toxic burden accumulates with each exposure. When it comes to treatment, however, it matters very much whether the exposure(s) occurred in the past or in the present. This is because the treatment that removes the toxins from the body requires the absence of ongoing exposure. In other words, the success of treatment designed to produce an egress of mold toxins from the body depends on conditions that prevent an ongoing ingress of mold toxins into the body. Before turning to the details on how to diagnose and treat mold toxicity, it may help to know what Dr. Shoemaker and his team have learned about the criteria needed to make the diagnosis.

Shoemaker also found that up to one in four people inherit HLA genes that predict poor clearance of biotoxins. If blood testing detects one of these genes, that person would be prone to retain mold toxins if exposed. Genes merely load the gun--environment pulls the trigger. Shoemaker and his team have identified a characteristic pattern of abnormalities affecting vision, immune system regulation, and blood flow. Immune System Abnormalities Most patients with toxicity syndrome have high C4a levels. This marker indicates activation of a toxin-handling protein produced by the innate immune systemthe part of the immune system that comes factory installed and ready to operate at birth. It doesnt have to be trainedit already knows to react to molecular patterns that signal danger. Another immune marker called transforming growth factor beta-1 (or TGF beta-1) runs high as well. Neuropeptide Hormone Abnormalities Certain neuropeptide hormones are adversely affected by the chronic inflammation that results when mold toxins are not effectively cleared from the body. These include anti-diuretic hormone (ADH), alpha melanocyte stimulating hormone (MSH) and vasoactive intestinal peptide (VIP). ADH tells the kidneys to conserve water. When ADH reserves fail, the patient is always thirsty but stays dehydrated despite drinking lots of water because the kidneys let the water escape. MSH acts like a field general coordinating immune responses in the mucous membranes of the body. A low MSH level can perpetuate a leaky gut. Both chronic inflammation and certain staph bacteria that colonize the deep nasal space are associated with low MSH levels. VIP is a master regulator of immune responses, circadian rhythm, cell secretions, and blood flow distribution in various body tissues. Low VIP levels can disrupt a range of key bodily functions. Low VIP levels are not uncommon in CIRS-WDB cases. Lab Interpretation The key to interpreting CIRS panel lab results is to use Shoemakers reference ranges for these markers as opposed to ranges determined by a hospital or by a national lab such as Quest Diagnostics or LabCorp. Each lab is responsible for setting its own reference range. Most do so based on specimens obtained from 100 to 200 consecutive patients regardless of health status. Shoemakers reference ranges are based on cases (sick patients) and controls (healthy patients) for thousands of people. Very few physicians are certified in the methods of lab interpretation required by the Shoemaker protocol.

38BIoMEDIcAL UpDATE

Robs Brush with Death

By Janet Presson In the fall of 2005, our son Rob, then 13 years old, changed schools and entered an excellent self-contained classroom at Greenwood Middle School in Goldsboro, NC. At the time, he was in excellent health, able to perform all the activities of daily living independently, and putting together 500 piece puzzles with little assistance. During the first few months of school, he was enjoying reading out loud, learning some geometry, and in general doing very well. Then, he started having a seriousand unprecedented problem with drooling and next started falling out of his chair, first at school and then at home. We worked with his doctor trying to figure out what was going on, adjusting the seizure medication he had taken for several years for petit mal seizures. Throughout 2006, Rob had dozens of blood draws and was tested for everything imaginable. In the fall of that year, Rob had both an MRI and a 24-hour EEG looking for either a brain tumor or seizures. No trace of either was found, but Rob continued to get worse each month. He stopped talking, lost the ability to walk without assistance, and was unable to even feed himself. He slept a lot, became somewhat incontinent, started choking on food, lost about 25 pounds, and finally became unresponsive. Waking him up each morning was becoming increasingly difficultI literally had to open his eyelids since he could no longer do it himself. Robs doctor, after ruling out everything he could think of, decided it looked like some type of poisoning and sent us to the Environmental Health Center in Dallas, Texas. Two weeks later, Rob was diagnosed with mold and pesticide toxicity. Wed already had our house tested for mold (negative), so as soon as we got back I insisted that the school be tested. Aspergillus, penicillium and stachybotrys were found in his classroom. When we received the results of Robs lab tests, he, of course, had mycotoxins in his system from those exact molds! Rob never had any respiratory issues, only neurological symptoms. I think if he had, we would have caught on much sooner as to what was making him so sick. There were only small patches of mold on some ceiling tiles, and Rob came home from school each day at lunchtime (due to his GF/CF diet) so he wasnt exposed as much as others in his class. However, after extensive research, I came to the conclusion that the seizure medication he was taking made

Close Call Although he now has only minor side effects, mold exposure at school took a serious toll on Rob Pressons health.

him more susceptible. Seizure medications (and certain other meds) can make the blood-brain barrier (that protects the brain from toxins) more porous, allowing mycotoxins to go directly to the brain. Most physicians dont know how to diagnose and treat mold toxicity. If we hadnt gotten to the right doctor when we did, Rob would have died. On a happier note, he is 21 years old now and only has minor residual side effects from this episode. We lost almost two years of his life dealing with this, but are so grateful he is still here. I urge parents to be aware of mold exposure and to be active in making sure their children are not exposed at home, in school, or in the community. Additionally, parents need to research any medications and supplements taken and be aware of those which may affect the integrity of the blood-brain barrier. I had the opportunity recently to sit down with Robs physician during this period, one of the top experts in the world on autism, and we were talking about how mold was not on either of our radars prior to Robs exposure. Since then, hes had several patients with similar issues. Now that he knows what hes looking at, hes able to turn them around quickly, before they regress to the point Rob did. I thank God that Rob lived and pray that no other family has to go through what we did. If you start seeing serious regression with no apparent cause, get your child to a physician who has experience in mold and other environmental issues. It may just save your childs life!

is the president and owner of A Small Miracle, Inc., an agency that provides habilitative services and supports to children and adults with autism and other intellectual disabilities in North Carolina. She lives in the mountains near Waynesville with her husband Rusty, son Rob, and their four dogs.

JANet PRessoN, R.N., M.ED....

BIoMEDIcAL UpDATE 39

ROOF MOLDRepeated condensation in a poorly ventilated attic can result in roof mold such as this.

Treatment of Mold Toxicity Syndrome (CIRS-WDB) Fortunately, it is possible to pull various toxins, including mold toxins, out of the body using binding agents. Such agents act like U.S. Marshals they handcuff the toxins and escort them out via the bowel. This prevents the endless recirculation and retention of these damaging toxins. As these toxins make their egress from the body via the bowel, toxins lodged in cells and tissues mobilize more easily into the bloodstream. This can cause a temporary increase in symptoms that is controllable to some degree with regular doses of high quality sh oil. If testing shows genetic susceptibility and lab evidence of exposure to mold toxins, then treatment is indicated. The mainstay of treatment for children is a prescription wont work well at all. The same is true if the patient is conmedication called Welchol (colesevelam), which came on tinually exposed at school or in the workplace. This is because the market many years ago as a way to lower cholesterol lev- for every batch of toxins pulled out of the body with binding els. Welchol is available in both tablet and powder forms. It agents, a new batch enters the body from breathing air that still is gentle and can be taken with meals contains mold toxins. If toxin ingress but it needs to be taken at least an hour equals toxin egress, nothing changes, or after drugs and supplements to avoid worsesymptoms may amplify from having their absorption blocked by the increased mobilization of toxins in When the health of your the system. the Welchol. Another cholesterol lowering agent There is a way to test whether known as Questran (cholestyramine) the home, school, or workplace is a loved ones is at stake, it is also available in powder form. It is source of toxin-producing molds. Its three times stronger than Welchol and called the ERMI test. ERMI stands can help to nd the right for Environmental Relative Moldiness is typically reserved for adults who can adhere to its more demanding Index. Using vacuum canisters for cardirections. It must be taken at least peted areas or swiffer cloths for wood or guidance for navigating an hour after drugs and supplements tiled areas, dust samples are obtained. and half an hour before meals, three These dust samples also contain mold the obstacles between times a day and again at bedtime. spores that have settled on oors and Questran also contains several addisurfaces. The lab amplifies any DNA tives. Pure forms are available through sequences present in the samples. you and recovery from compounding pharmacies. The result is a listing of the relaQuestran is a very strong toxin bindtive amounts of specic mold species toxic mold illness. er. It removes more toxins per dose than found in the sample. Detected species other binders, which makes it more are divided into common molds and prone to aggravate underlying symptoxin-producing molds and the results toms. It is also more likely to cause reported as an index that ranges from constipation. Dosing can be modied to fewer times per day minus 10 (least toxin producing molds) to plus 20 (most and less powder per dose. Other binders such as charcoal or toxin producing molds). Shoemakers research indicates bentonite clay are sometimes used but they have not been that to recover from CIRS-WDB, people with mold toxicity proven to work as well as Questran or Welchol. syndrome must live, work, or go to school in an environment with ERMI scores less than 2. Pandoras Box You wont get better with continued exposure to toxic If this all sounds too easy, youre right. Heres the catch: if the molds, so if the ERMI score at home, work, or school is patient lives in a home that contains mold toxins, the treatment greater than two, you have just opened Pandoras Box and

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40BIoMEDIcAL UpDATE

From Spore to ColonyStachybotrys chartarum spores (L) and ceiling colonies (R)

now the air is also contaminated with difficult questions. Should you hire a mold inspector to nd areas of water intrusion or plumbing leaks? Should you hire a mold remediator to clean everything up? Will this be money well spent? What are the chances that remediation will fail to produce an ERMI score of less than two, thus impeding recovery? How will a landlord, employer, or school administrator respond to a request to perform ERMI testing on-site? If I nd toxic mold in my home, do I have to report it? You get the idea. When the health of your loved ones is at stake, it can help to nd the right guidance for navigating the obstacles between you and recovery from toxic mold illness. Before running the obstacle course of mold toxicity diagnosis and treatment, seek out a physician with certied expertise in the Shoemaker protocol. This will maximize your chances of getting the answers you need. The upshot of it all A preliminary observation suggests that children with ASD and toxic mold exposure may have nearly twice as many neuropsychological abnormalities as children with ASD alone. While more research is needed to better clarify the functional differences between people with ASD and people with ASD plus toxic mold exposure, this simple observation takes on great potential meaning. This is because mold toxicity syndrome, also known as CIRS-WDB, is treatable. Shoemaker and colleagues at the Center for Research on BiotoxinAssociated Illnesses have developed a well-documented protocol for recovery from mold toxicity syndrome. To obtain proper help sorting out whether a loved one with ASD also suffers from mold toxicity, you must locate a physician with experience in this area. At the time of this writing, only ve physicians nationwide are Shoemaker-certied to diagnose and treat mold toxicity syndrome. Non-certied physicians with adequate experience are also hard to nd. For help locating a physician, contact Dr. Shoemakers Center via www.survivingmold.com. To be clear, no research to date implicates mold toxicity syndrome as a cause of ASD. Rather, mold toxicity syndrome is a multi-symptom, multisystem illness in its own right that can complicate efforts to treat people with ASD. If you have two tacks in your behind and we pull one out, youre not likely to report feeling 50 percent better. CIRS-WDB needs to be treated in its own way. Successful treatment wont erase ASD, but it is likely to remove a few of the invisible sandbags on the backs of people with ASD and move them closer to their goals for a more functional life.

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Mold Menace
By Kimberly Linderman In 2000, my family moved into what we thought was our dream home, one of the first houses built in the small community where we lived. Built in 1835, it had been a family home until it was entered into a trust with a bank and became a rental property, owned by my in-laws. After the birth of our third child, our home had become too small and we were looking for a larger, country home just as this one became available. We jumped at the chance to move our family to the country and fell in love with the historic brick twostory on seven acres. Soon after, I became pregnant with our fourth child and all was fine until we had a roof leak in the fall of 2002. We fixed the leak and within a month, the children and I started having respiratory issues: ear infections, sinus infections, pneumonia and flu-like symptoms that lasted the entire winter. No amount of antibiotics helped. Once spring arrived, we could open the windows and the symptoms would subside. We often visited my parents home for the weekend and always felt better when away from our home. Upon returning, however, the symptoms would return. Our fourth child, Kaden, began presenting autistic like symptoms after getting the catch-up vaccination schedule in September of 2003. Kaden and our third child, Kassidy, had both gotten behind in their vaccines due to recurrent infections and the doctor wanted to get them up-to-date after a three month stretch without illness. No one would answer my questions: Why are my children always sick? Why arent the antibiotics working? Even after they both had tubes placed in their ears, they still continued to have ear infections, but at no time was what was in their ears cultured. I researched hundreds of hours on dial-up internet late at night while they slept and finally came upon a mold help forum. This is where my mold education began. It took a whole year of seeing doctor after doctor, calling health departments, asking experts to include an infectious disease doctor for help to finally get some answers. I was sick, really sickand no one believed me. Even family members would say, It is all in your head. My family doctor finally told me to move out of the home following a cat scan showing nodules in my lungs. I saw a trusted heart/lung doctor who had the head of radiology view my cat scan frame by frame. I had an active fungal infection in my chest, leading to an eight-hour surgery to remove onefourth of my left lung due to the extent of the infection. I was hospitalized for a month and on antifungal medication for six months to clear up one of the worst fungal infections they had ever seen. The pictures of the inside of my chest are now used to teach infectious disease doctors in the Midwest. Because of my case, two more infectious disease doctors are now employed at the same practice that, in 2002, told me, There is nothing wrong with you. Stop going to see doctorsits all in your head. We ended up moving out of the home with just the clothes on our backs, lost our healthand it took years to recover. Did the exposure contribute to my sons autism? I may never know, but I wanted to share this with as many people as possible since mold toxicity may be a hidden cause of death whose magnitude is unknown.

Red Flags for Toxic Mold Exposure

f you feel better and symptoms subside I when you are away from the home you may have a mold problem. Is there a musty smell or do you or your children smell like yeast? Pets show symptoms normally before humans. Are you or your family having a lot of recurrent respiratory symptoms?  oes anyone in the family have athletes D foot or other fungal infections? Not everyone reacts to mold the same way. Does anyone have a constant cough or flu-like symptoms?

Tips if you believe your home is mold-infested:

HaVE ThE hOmE TEsTED. Upon
having our home tested we found 17 different types of mold inside the home that were different or at elevated levels compared to outside of the home. There was additional mold found in the ground surrounding the home and in the well.

WhEN ThErE is a LEaK OF aNY

KiND, rEmOVE ThE wET maTEriaLs wiThiN 12 hOurs. While wet, the mold spores dont spread. Once the area dries out, the mold reproduces, releasing the spores to go and find other wet areas in order to live.

ChEcK YOur hOmE iNsuraNcE

FOr mOLD EXcLusiONs (our insurance had an exclusion). After receiving the results from the mold testing, my husband started investigating. He ripped out the ceiling in our childrens bedroom and found it was full of black mold following years of roof leaks that were covered up by a drop ceiling.

DO YOur rEsEarch. Mold can only

be killed by sunlight, and bleach only changes its color. If you need find a new place to live, only take items from the home that can be cleaned with Borax and set in the sun for at least 8 hours. Do not take a mattress or anything else that cannot be cleaned. You dont want to infect your new home.

Kimberlys youngest child, Kaden, was vaccine injured at 20 months and is recovering from autisticlike symptoms. She is the co-host of Linderman Unleashed on Natural News Radio, and is the Marketing Director of Autism File Magazine.

KImbeRly LINDeRmAN....

42 TIpS FRoM ThE TEAM

HEALTHY HOLIDAYS!
Nourishing your whole self at this special time of the year
B y L A U R e N Z I met

he holidays can be a joyous time. They can be stressful too. In addition to family, friends, fun and festivities, regardless of which holiday you are celebrating, sweets abound. Most of us have fond associations with sweets from childhood, but lets take a moment to look at sugargood old sugar. We can imagine holiday treats and our mouths water; a warm feeling may come over us. We may think of sweets in sentimental and emotional ways but the fact is that sugar is a chemical, not the love we felt in our grandmothers kitchen. We all know that sugar has been found to cause tooth decay and is a contributor to obesity and diabetes, but what many people may not know is the negative effect sugar can have on the brain. A new UCLA study is the rst to show how a steady diet high in fructose can damage your memory and learning. The study was published in the Journal of Physiology. In animal studies, high-fructose syrup was found
LAUReN ZImet, MS/CCC/SLP

to have negative effects on the brain including signicant impairment in cognitive abilitiesthe subjects had slower response times, and their brains showed a decline in synaptic activity. Their brain cells had trouble s ig n a l i n g e a c h ot her, d i sr upting the subjects ability to think clearly and recall the information theyd learned previously. With this information added to mounting evidence that sugar is not our friend, why do we have so much trouble turning away from it? One reason is the emotional associations we have with sweets. Another, suggested by new brain science research, is that humans have developed an internal reward system that makes us crave foods that once helped us survive, making it hard to kick the sugar habit, even with substantial evidence that its toxic. The pleasure centers in our brain are being lit up by sugar much like those of drug addicts when they use their drug of choice. If you are interested in having a healthier holiday for yourself and your children, it is important to begin with small changes. Over time these will become larger. Remember any change is signicant. Some suggestions to begin moving away from processed sugar are: Start with a family discussion about
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sugar or a more global conversation about family health and wellness. Discuss how you each may be able to modify your sugar intake. Get creative with recipes and see where you can substitute fruit, honey, pure maple syrup, or stevia for processed sugar. Add in three to four helpings of colorful fruits and vegetables to your day. Create new family traditions that have nothing to do with deserts. When you decide on a plan, you may want to support this change through self talk, such as: I can have delicious foods that taste good, satisfy me AND bring health into my life and through positive affirmations like: `` I am ADDING tasty foods to my eating that will increase my health and wellness. `` I am feeling powerful as I make healthy changes. `` My mind and body are thriving as I make healthy choices. Wishing you a happy and healthy holiday season!

BAKING TIPS:
Replace white refined sugar with maple syrup Maple syrup has a low glycemic index and organic maple syrup is often considered a super food because has an abundance of vitamins, minerals and antioxidants, plus, its sweet!

Substitute 23 c 34 c of maple
syrup (organic is best) for each (1) cup of regular sugar

Add tsp of baking soda for

every cup of syrup used or reduce liquid by 3 TBS when using syrup (or honey)

Passionate about giving children a healthy start in life, Lauren Zimet, MS, CCC/SLP, is a speech language pathologist and the founder of The Healthy Foundations Program. She is the co-developer of Personal Power Tools for Self Management and Social Navigation. Lauren specializes in pragmatics and picky eating. She utilizes current research on brain development and nutrition to educate and empower her clients and their families to make healthy choices.

Turn oven down 25 degrees

because maple syrup caramelizes at lower temp than sugar

TIpS FRoM ThE TEAM 43

44 GREEN HoME HEALThy KIDS

Keeping It Real
Articial ingredients and processed foods abound this time of yearand can lead to a host of health problems
B y De I R D R e Im U S

he holiday season is a time for families to come together, to momentarily forget about work, school, and other obligations, to shower one another with gifts, and to participate in traditions maintained across generations. Oh, and to eat lots of food. Most of it bad for us. But its a special occasion, right? For decades weve been told to steer clear of unhealthy foods because they contain a lot of calories, excessive amounts of fat and cholesterol, or too much sugar. While true, such warnings leave out what are often some of the most toxic ingredients in processed foods: articial colors. Such unnatural additives might make candy, cereals, gum, and even pickles look more appealing, but they are petroleum-based and can do real damage to your bodyor even worse, that of your developing child. A rainbow of risks A 2010 report by the Center for Science in the Public Interest (CSPI) linked dyes in food to allergic reactions, hyperactivity, and cancer what they termed a rainbow of risks. Even the U.S. Food and Drug Administration has conceded that articial food colorings can exacerbate bad behavior in kids susceptible to ADHD. Anecdotally, parents have reported the positive behavioral
DeIRDRe ImUs...

Rather than wait for the FDA to get on board, you can ban articial food dyes from your familys diet by seeking out naturally colored foods.

FORGET THE FAKES Alternatives to unhealthy artificial colors for baking and decorating are readily available at health food stores and online.

effects of eliminating articial dyes from the diets of children with ADHD and other similar conditions. Despite scientific data and sustained public outcry, the FDA has yet to ban Red 40, Yellow 5, or Blue 1, three of the most widely used dyes, from processed foods produced in the U.S. Food makers in Europe are required to put large warning labels on products containing articial dyes. As a result, many manufacturers have swapped out these dyes in favor of more natural alternatives like beets, turmeric root, purple cabbage, and other innately colorful foods. Parents leading the way Since the U.S. government wont outlaw these potentially toxic ingredients from our food chain, a few concerned parents have taken matters into their own hands. In March of 2013, two mom food bloggers petitioned Kraft to stop articially coloring the cheese mix in its famous macaroni and cheese with

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 field of environmental health.

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GREEN HoME HEALThy KIDS 45

Yellow 5 and Yellow 6. Eight months later, in November, Kraft announced that beginning in 2014, it would use spices instead of articial food dyes to create the pastas quintessential color. More recently, a concerned mom named Renee Shutters, along with CSPI, petitioned Mars, Inc., the manufacturer of M&Ms and other popular candies, to replace articial dyes with natural colorings, as theyve already done in Europe. On the petition website Change.org, Shutters noted the stark behavioral differences in her nine-year old son Trenton after he stopped consuming foods with articial colorings: Trent changed from a child who would have a meltdown if he didnt get his way during playtime to a calm student who could share and do his schoolwork. Rather than wait for the FDA to get on board, you can ban articial food dyes from your familys diet by seeking out naturally colored foods. Start by shopping at the two nationwide food chainsTrader Joes and Whole Foodsthat have already banned from their shelves products containing articial dyes. Both stores also carry all-natural food colorings for home baking and cooking projects. Read the labels Between Halloween, Thanksgiving, Christmas, and Hanukkah, this is an especially potent time of year for processed foods, particularly candy. Make sure to read the ingredients on food labels before allowing your kids to eat themnot just because they might contain articial colors, but because they might also contain other unhealthy, unnecessary components, like trans fats. This artery-clogging substance is couched on ingredient labels inside terms like partially hydrogenated, fractioned, or hydrogenated. Fortunately, trans fats might soon disappear from American diets altogether: The FDA announced in early November that it will require the food industry to gradually phase out articial trans fats because they are a hazard to public health. This is a positive advancement for the American

food chain, but other threats remain. According to EverydayHealth.com, other ingredients to avoid include: `` Refined grains like white flour, rice, pasta and bread, which are drained of their natural nutrients in order to extend shelf life. The refining process also makes these grains easier to digest, which can send blood sugar and insulin through the roof. `` High fructose corn syrup is in practically all processed foods and can increase triglycerides, boost fat-storing hormones, and cause weight gain. `` Preservatives like sodium benzoate and potassium benzoate might prevent mold growth in foods, but benzene is a toxin that has been linked to thyroid damage. `` Another commonly used preservativebutylated hydroxyanisole, or BHAis a major endocrine disruptor, meaning it messes up your hormones. Such disruptions can cause cancer, birth defects, or developmental disorders, according to the National Institute of Environmental Health Sciences. `` Processed meatslike cold cuts often contain sodium nitrates and sodium nitrites, which have been linked to colon cancer and diabetes. `` MSGshort for monosodium glutamateis not just in some Chinese food. It is an unnatural flavor enhancer also found in canned vegetables, soups and processed meats. The Mayo Clinic notes that MSG has been linked to headaches, rapid heartbeat, chest pain, and nausea. The possible health implications of processed foods are real, and they are scary. Luckily, it is easyand often cheaperto cut these items from your familys diet, and expose your kids to the wonderful world of whole grains, organic fruits and vegetables, and snacks made naturally rather than synthetically.

Boosting cognition Chances are if youre feeding a child on the autism spectr um, youve already eliminated from his or her diet proteins like gluten and casein, found respectively in many grains and dairy products, because they cause problems in the gut that exacerbate problems in the brain. While it is important to remove troublesome items from your ASD childs diet, it is also necessary to make sure your entire familys diet is comprised of health-promoting superfoods that reduce inammation and boost cognition. Fish oil, ax seeds and walnuts contain omega-3 fatty acids, which have strong anti-inammatory properties and can improve focus and memory. Berries have been shown to slow cognitive decline, and are fun, colorful additions to any childs plate. Prebiotic foods, like asparagus, beans, bananas and garlic support good bacteria in the gut. Though asparagus and walnuts may not be high on the average childs list of preferred foods, they are easily hidden in purees, smoothies, muffins or sauces. This holiday season, and yearround, opt for natural, unprocessed, benecial foods over articially colored candy, pies, cookies, and other less than desirable treats. Not only may you notice an improvement in your childs behavior if theyre on the spectrum, but youll likely nd that your entire family will get fewer colds, have more energy, and perform better in school or at work. Its not easy to change established habits, especially for kids, and especially when it comes to food. But consuming processed foods has become a risky game, and its one you dont have to play. Explain to your kids why youre choosing blueberries over Blue 1, and maybe theyll pass this knowledge along to their friends, and make good decisions about eating for the rest of their lives.
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.

46ADVocAcy

The VICPs Stacked Deck

Advocates call for overhaulor abolition of a hopelessly broken vaccine injury compensation system
By THe SAFeMINDS TeAm

ontrary to what the government and media would like us to believe, vaccine injury in this country is hardly rare. More than 30,000 adverse events get reported annually to the official federal monitoring program for vaccine safety, with 424,135 cases listed since 1990. Many experts, however, believe the public underreports injuries by a factor of up to one hundred times because no legal requirement exists for reporting adverse events to the system. This means up to 42.4 million Americans have experienced an adverse event from a vaccine. Thankfully, for those events reported, most (roughly 85%) were considered mild (localized pain and swelling, lowgrade fever, etc.), but the others were far more serious, including encephalopathy (brain damage), seizure disorders, chronic arthritis and neurodevelopmental disorders including, as many parents argue, autistic regression. To put it another way, at least 4,500 serious vaccine injuries get reported every year in the United States. Many of the injured, including children (most cases are now brought by adults), become eligible to le for monetary damages from the Vaccine Injury Compensation Program (VICP), which some people incorrectly call vaccine court. Sadly, staggeringly few cases have actually received compensation. Last year, 2,697 claims were led and all but 258 (9.5%) were dismissed. Since 1990, just 3,400 cases (about 25% of the total) have been paid out, even though the true number of potentially eligible cases was unquestionably much higher. As of October 17, 2013, $2.8 billion has been awarded, which may seem like a lot, but averages out to only $823,530 per person, often just enough to cover lifetime expenses but not any damages. This system could not be more broken. SafeMinds and other advocacy

Unfortunately, by the time we found out and realized he was suffering with autism induced by mercury neurotoxicity, we were outside the statute of limitations.

groups strongly believe the VICP should be dismantled. Barring that, it must be quickly and radically overhauled to make it fulfill Congress intent for compensating the vaccineinjured. Despite these intentions, VICP and the associated programs in Vaccine Adverse Event Reporting System (VAERS) have resulted in indefensible vaccine safety efforts, inadequate warnings about vaccine risks and insufficient compensation for many of the vaccine-injured. What follows describes the program, a list of needed reforms, and information parents need to know.

VICP 101

Congress established the VICP in 1986 to standardize the national immunization program that indemnies the medical and pharmaceutical industries from lawsuits, compensates those injured, and promotes safer vaccines in the war on communicable disease. VICP was seen as

Bigstock

ADVocAcy 47

WHAT PARENTS SHOULD KNOW

benecial to increasing public trust in vaccines and honoring the social compact, much like our society looks after veterans because they fought to defend the collective good. Congress made it fundamentally clear that compensation must be swift, generous and awarded in a non-adversarial manner. In exchange, parents of vaccine-injured children (petitioners) must le in VICP rst, before suing in civil court. They petition the Department of Health and Human Services (HHS), and not vaccine manufacturers or doctors. The government recognizes certain vaccine-induced outcomes, which appear on the Vaccine Injury Table. These are limited to death, anaphylaxis, chronic arthritis, seizure disorder, encephalopathy, vaccine-strain measles, vaccine-strain polio and paralytic polio. Injuries must generally manifest within hours or a few days. If families meet the exacting requirements for a table injury, they have a presumption of compensation. For non-table injuries however, they must show causation based on a preponderance of the evidence. Whats more, petitioners have to file within three years of the rst symptoms, a rule SafeMinds opposes. Much more generous time limits should be placed on the ability to compensate injury. Many people have heard of VICP from the Omnibus Autism Proceeding, which took over eight years to litigate. More than 5,000 vaccine-autism claims were led and the cases were tested under two theories: Mercury-induced autism and MMR vaccine-induced autism. Only six test cases were heard. All of them lost. To date, HHS insists that no claims for autism under VICP have been compensated. drafting the original law. She is not alone. Even the programs former Chief Special Master, Gary Golkiewicz, said the government, altered the game so that its clearly in their favor. (The government) has a vested interest in vaccines being good. It doesnt take a mental giant to see the fundamental unfairness in this. VICP also eliminates incentives for companies to produce safer vaccines. Congress allows manufacturers to produce vaccines mandated by the federal government for the public, without accepting any liability whatsoever. SafeMinds believes the program should be eliminated. But if Congress wont commit, they must take steps to reform VICP, including: Extend the Statute: The brief statute of limitations is considerably shorter than most legal actions in civil court involving injury to minors. Petitioners must le no more than 36 months after the first symptom or manifestation of onset or of the significant aggravation of such injury after the administration of the vaccine. If a claim is brought beyond that date, it will be dismissed and barred from further action in courts of law. SafeMinds President Lyn Redwood, RN, MSN, learned this the hard way. Nobody informed me that my sons vaccines contained mercury, she says. Unfortunately, by the time we found out and realized he was suffering with autism induced by mercury neurotoxicity, we were outside the statute of limitations. SafeMinds believes thousands of children were poisoned by mercury in vaccines. Their parents are only nding that out now, as science better understands these injuries. No one should be barred from justice for such reasons. Time constraints on ling a VICP claim should last at least until children reach adulthood. Improve impartiality: The legal deck is stacked against petitioners from the start. Attorneys for HHS work for the Justice Department and have at their disposal all the money, power and access to experts that
HOw TO FiLE: A complete set of rules is listed at the VICP site. The good news is that most petitioners can begin by filing a short-form claim on their own, which doesnt require a lawyer. If your case goes to trial, you can find an attorney to represent you. EViDENcE NEEDED: If you plan on filing a claim, begin gathering all your documentation now, including medical records, vaccine records, test results and even emails between you and your pediatrician. Anything you have to show that an injury was suffered shortly after vaccination will help you with your case. WhaTs COVErED: Depending on the type and severity of the injury, VICP compensation can cover a wide range of products and services for the vaccineinjured, everything from physical therapy and occupational therapy to, yes, applied behavioral analysis (ABA) therapy (used almost exclusively to treat autism). SuccEssFuL CasEs: Recently, a few cases have received substantial awards in the millions of dollars over the lifetime of the individual. Many children with ASD diagnoses have also won compensation although the government refuses to admit compensating autism caseseven as it underwrites ABA therapy for the vaccine-injured. Your best bet is if you can prove a table injury. But never mention the word autism. Many lawyers are catching on to this strategy, and children with ASD are being compensated for vaccine-induced encephalopathy or seizure disorders, or both. TELL YOur STOrY: The House Committee on Oversight and Government Reform will hold hearings on this dysfunctional program in 2014. Please send your story to VICP@safeminds.org or visit www.SafeMinds.org for more opportunity to weigh in. If the VICP has not lived up to the intent of Congress, then Congress should restore victims constitutional rights to seek legal recourse in a court of law, with reasonable statutes of limitations, equal access to discovery, independent judges, a right to trial by jury, and all other rights provided under the Constitution.

WHAT NEEDS FIXING

HHS has turned a basic administrative compensation process into a highly adversarial, lengthy, expensive, traumatic and unfair imitation of a court trial for vaccine victims and their attorneys, charges Barbara Loe Fisher of the National Vaccine Information Center, who was instrumental in

48ADVocAcy

our government can command. The Court of Federal Claims appoints Special Masters for four-year terms who then hear and decide most casesnot exactly what we would call judicial independence. Meanwhile, petitioners are denied access to government data that would be provided under normal discovery rules in civil court. SafeMinds feels this must end. And even though VICP is required to cover reasonable attorneys fees and costs, delayed and below-market reimbursements deter many of the most experienced lawyers and medical experts from participating. VICP needs to increase fees for petitioners attorneys and speed up payments. Revitalize the Table: The law was written to cover the seven vaccines children received in 1986: polio, diphtheria, pertussis, tetanus, measles, mumps and rubella. But today, the CDC calls for 70 doses of 16 vaccinesmeaning nine new vaccines have been added to the childhood
Adverse Effect
Brachial neuritis (28 days) Encephalopathy or encephalitis (7 days) Encephalopathy or encephalitis (15 days) Chronic arthritis (42 days) Thrombocytopenic purpura (7-30 days) Vaccine-strain measles viral infection in an immunodeficient recipient (6 months) Paralytic polio* Anaphylaxis or anaphylactic shock (7 days) Any acute complications or sequelae (including death) of above events (intervalnot applicable) Events described in manufacturers package insert as contraindications to additional doses of vaccine (interval see package insert) T P

WHAT IS VAERS?
According to parents whose children have developed medical problems associated with vaccination, most health care providers typically call it a coincidence. They dont link illness or adverse neurological outcomes with vaccines, so these are rarely ever reported, making it much more important for parents to complete a VAERS form online. Reporting such events may help identify important new safety concerns that otherwise would not come to light. Please visit http://vaers. hhs.gov/esub/index to find out more, including how to complete a report online. The Reportable Events Table specifically outlines the reportable post-vaccination events and the time frames in which they must occur in order to qualify as being reportable. To obtain a copy of the Reportable Events Table, call 1-800-822-7967 or go to http://vaers.hhs.gov/resources/VAERS_Table_of_Reportable_Events_Following_Vaccination.pdf SafeMinds believes that VAERS should be mandatory for all physicians, and calls for ongoing monitoring of vaccine safety data. We also want vaccine makers with greater reported adverse events to bear a larger proportion of vaccine program costs, creating a financial incentive for manufacturers to make the safest vaccines possible.

schedule since 1986more than doubling the possibility of injury. Despite this, only one new table injury has been added: anaphylaxis within four
R M OPV IPV HepB Hib V

hours of hepatitis B vaccine. In contrast, in the early 1990s HHS eliminated most table injuries, despite the VICPs mission to provide a presumptive,
RV PCV HepA Flu MCV HPV

*Vaccine Formulation includes:

MMR

*Additional information available at http://vaers.hhs.gov/resources/VAERS_Table_of_Reportable_Events_Following_Vaccination.pdf Effective date: November 10, 2008 . The Reportable Events Table (RET) reflects what is reportable by law (42 USC 300aa-25) to the Vaccine Adverse Event Reporting System (VAERS) including conditions found in the manufacturers package insert. In addition, healthcare professionals are encouraged to report any clinically significant or unexpected events (even if not certain the vaccine caused the event) for any vaccine, whether or not it is listed on the RET. Manufacturers are also required by regulation (21CFR 600.80) to report to the VAERS program all adverse events made known to them for any vaccine. A list of vaccine abbreviations is located at: http://www.cdc.gov/vaccines/recs/acip/vac-abbrev.htm

ADVocAcy 49

SYSTEMWIDE BREAKDOWNDespite the fact that vaccine side effects can be extreme, compensation for the injured is most often out of reach.

no-fault administrative remedy. HHS removed residual seizure disorder from the table, for example, nullifying presumptive compensation for children with seizures immediately after the DPT vaccine. As a result, nearly all DPT seizure-disorder cases became off-table, requiring lengthy litigation with varying results. HHS also redened encephalopathy to exclude most cases from on-table compen sation. Th ats why 90% of all VICP claims today must be hard-fought in litigation, and why three-quarters of all cases are dismissed. SafeMinds recommends the program stop keeping as many injuries as possible off-table. SafeMinds also recommends that if an injury meets the preponderance of evidence standard that a vaccine caused it, then that injury must be added to the table immediately, and the VICP must inform all claimants previously denied for the same or similar injury that their claim is now recognized as compensable. We also recommend an advisory panel, with at least 30% representation from the vaccine injured or their parents, to periodically evaluate the injury table. SafeMinds nds it reprehensible that VICP has relied on one-sided studies

to turn away claims. There should be fair and open hearings ever y two years into connections between vaccines and neurodevelopmental disorders in order to keep up with the science and to establish safety standards based on the most recent data available. Eliminate Table-Injury Hearings: SafeMinds recommends if the claimants medical evidence substantiates an injury meeting the requirements on the table of injuries, then that petition be approved without hearing, discovery or delay. This would make VICP the true no-fault, non-adversarial program Congress intended it to be. Increa se Award s : Petitioners are entitled up to $250,000 in the event of a vaccine-related death and a maximum of $250,000 for pain and suffering. These caps have not changed since 1986. SafeMinds recommends the death claim be raised to $1,000,000 and the pain-and-suffering cap eliminated. Also, VICP must begin paying lifelong medical, physical/occupational therapy, rehabilitation, medical monitoring, special diets, supplements, educational/tutorial therapy, and other expenses incurred from injury.

The law likewise requires VICP to compensate generously. But this is rarely the case. Why? SafeMinds believes that HHS and DOJ view vaccine-injury compensation as undermining public trust in a universal vaccine program. The higher the awards, government officials worry, the greater the distrust. Increase Awareness: The law requires reasonable efforts to inform the public about the existence of the VICP, but the total budget for publicity is just $10,000 a year, versus the $4 billion budget for federal vaccine promotion and development. VICP has compensated fewer cases than the actual number of vaccine injury cases because of ignorance about vaccine injury, and about the compensation program. SafeMinds recommends far more funds, in the millions of dollars, for annual publicawareness campaigns on vaccine safety and vaccine-injury compensation. Provide Alternatives: For the vaccine-injured, VICP is just about t heir on ly recours e. Th i s must change. SafeMinds believes that cases dismissed for untimely statute-oflimitations ling must be allowed to proceed in civil court. Reduce time to compensation: It can take eight to 10 years for a case to be adjudicated. SafeMinds finds this unacceptable. If vaccine-injured Americans are not afforded justice in a shorter timeframe, SafeMinds recommends the VICP program should end.
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Canary Party Video Do Vaccines Cause Autism? www.youtube.com/ watch?v=6S1-LgYyjQg VAERS Reports http://vaers.hhs.gov/data/data SafeMinds www.safeminds.org Unanswered Questions http://digitalcommons.pace.edu/pelr/ vol28/iss2/6/

www.sxc.hu

50NUTRITIoN SoLUTIoNS

Ring in the yuletide season with gluten and dairy free versions of traditional holiday favorites
B y E lo U I S e Rob I N S o N

Festive Fare
W

... 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, education settings food companies and catering departments. Moving on Elouise has then specialised in working around health promotion for children, including working to support 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 developing new recipes and has written many recipes to support families including a recipe booklet for fussy eaters.

ELOUISE ROBINSON, DIETITIAN...

ith the holidays approaching, families are in the kitchen more than ever and entertaining friends more than any other time of the year. These recipes are designed so they can be enjoyed by everyoneand the family wont even notice they are all gluten and dairy free. With lots of spices and seasonal ingredients, youll ll the air with the familiar aromas of this special time of the year.

Getty Images/iStockphoto

NUTRITIoN SoLUTIoNS 51

Stuffed chicken wrapped in parma ham (or stuffed mushrooms)

Serves 6 portions of chicken or 4 mushrooms, or can be mixed and matched

Ingredients 6 large boneless, skinless chicken breasts or thighs 12 pieces of parma ham or bacon (Or 4 large flat mushrooms) Stuffing 2 Tbsps. dairy free margarine 1 Tbsp. olive oil 1 scant cup/70g mushrooms 1 3 cup dried mushrooms (e.g. porcini) + 13 cup/100 militires hot water 2 cloves garlic, finely crushed or chopped Half medium onion/70 g, finely chopped 1 small leek /1 cup, finely chopped zested lemon plus 1 Tbsp. lemon juice Salt and freshly ground black pepper to taste 1 4 tsp. fresh grated or ground nutmeg 1 cup/60 g fresh spinach 1 3 cup/40 g walnuts, roughly chopped

Method 1. Preheat the oven to 400F/200C/Gas 6. Place chicken on a piece of parchment paper and cover with more parchment paper. Pound out the chicken from the center of the bag outward using a heavy-bottomed skillet, mallet or rolling pin to flatten out the chicken. 2. Place a large heavy based pan over moderate heat. When hot, add margarine, oil, mushroom, garlic, onion and leeks. Season with salt and pepper, cover and cook for 10 minutes stirring occasionally. Add the lemon juice and zest, nutmeg and spinach, cover and allow to wilt and stir together. 3. Place a mound of stuffing on each chicken breast or thigh and roll breast over the stuffing. Take a piece of parma ham and cross with another, place the chicken in the middle and close the open ends of the chicken first and followed by the other piece to create a parcel; place in oven and bake for about 25 minutes or until cooked. Stuffed mushrooms 1. Use a large flat mushroom brush to clean and remove the stalks, brush with a little olive oil and place on a baking tray to cook for 10 minutes. 2. Remove the tray with the mushrooms, get rid of any excess liquid, then place the stuffing mixture on top and bake for another 10 minutes. 3. Serve with cranberry sauce and trimmings of your choice.
`` TIp: If the stuffing mixture is cooled this can be added to the chicken and all prepared in the fridge up to a day in advance so you can just place in your oven to cook when your guests arrive.

Bigstock

Bigstock

52NUTRITIoN SoLUTIoNS

SpeechNutrients
Pediatrician Formulated
SpeechNutrients speak is the only formulation that provides precise doses and ratios of 7 key nutrients for children with special nutritional requirements. The Targeted Benefits include:
www.sxc.hu

Thick Hot Chocolate with Cinnamon

Serves 4

Ingredients 1 13.5 oz./400 ml can coconut milk 1 cup/250 ml water cup/110 g pumpkin, sweet potato or squash puree 3 Tbsp. unsweetened cocoa powder 1 tsp. cinnamon Pinch sea salt Method 1. Place all the ingredients in a pan, whisk together 2. Bring the mixture to a slow simmer over a medium low heat, whisking occasionally 3. Heat till warm and serve

Supports cognitive function Provides antioxidant support and concentrated Ultra-purified formulation

Try New speak Liquid

`` TIpS: The vegetable puree naturally thickens the hot chocolate due to the starches and gives a small helping hand with some extra fiber and nutrients; the hot chocolate recipe will work without the puree for a thinner texture

Chocolate and chestnut dessert

Serves 4

Ingredients 1 cup/150 grams plain dairy free chocolate chips, plus a little extra for decoration 1 3 cup/35 grams icing sugar can/210 grams unsweetened chestnut puree 1 tablespoon rum or brandy (optional) 2 3 cup/150 ml coconut milk Method 1. Place the chocolate into a small heatproof bowl and place over
Learn more about the benefits of speak by visiting our website at www.SpeechNutrients.com
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a pan of gently simmering water (dont let the bowl touch the water) and allow to melt 2. In a separate bowl mix the icing sugar into the chestnut puree 3. Add your melted chocolate and rum or brandy and coconut milk 4. Pour into your serving dish and place in the fridge to set, decorate with grated chocolate if you wish
`` TIp: If you dont have coconut milk then you can replace with almond milk instead.

NUTRITIoN SoLUTIoNS 53

Recipes That Heal The Gut, To Heal The Brain

by Jane Casey

GUT Over It!

When the solution is simple, God is answering Albert Einstein

Bigstock

Order Now!

Toffee apple cake

Serves 8 to 10

www.janecaseyskitchen.com/

Ingredients Toffee apple filling 3 large Bramley or Granny Smith apples 3 Tbsp./50 ml water cup/50 grams soft dark brown sugar 1 3 cup/40 grams chopped pecans (optional) tsp. cinnamon Cake 2 3 cup/150 grams dairy-free margarine 2 3 cup/150 grams sugar 3 4 cup + 1 tbsp/75 grams gluten-free flour 1 tsp. baking powder Scant 12 cup/75 grams ground almonds 3 eggs Crushed seeds of 5 cardamom pods or tsp cardamom powder (optional)

Method 1. Preheat the oven to 350F/180C/Gas 4. 2. Peel and core the apples and cut into large pieces. Add to a pan to cook the apples with a little water and soft dark brown sugar and cinnamon until a thick-ish toffee-colored puree results, mix in the pecan. Leave to cool. 3. Beat together dairy free margarine and sugar, then mix in the flour, baking powder, ground almonds, eggs and cardamom seeds. Put half the mixture into a greased and lined 1 lb. loaf tin, spread over the apple puree mixture, finishing with the remaining sponge mixture. Bake for 3540 minutes.
This cake may dip a little in the center due to having the soft apple layer. The cake can be stored in an airtight container for a few days to slice with a cup of coffee when unexpected or invited guests drop by.

FinD Out mORe

To find more gluten and casein free recipes visit the Autism Food Club website and signup to the free newsletter: www.theautismfoodclub.co.uk/

54SAFETy MATTERS

Wandering Prevention At School

Practical Tips for Parents

B y L o R I M cIlw A I N , N A t I o N A l A U t I S m A S S oc I A t I o N

s we saw with the disappearance of Avonte Oqeundo in early October, wandering and bolting behaviors can happen in any setting, schools included. The 14-year-old student from Queens slipped away during a classroom transition, leading to a massive search that continues at this writing. While wandering in general affects 49% of children with autism, tragedies associated with school-related wandering are exceptionally rare. This could be because there are typically less immediate threats directly near school campuses, and because there are naturally more people available to search. Either way, the fear of school-related wandering has left many parents in our community struggling with ways to keep their children safe. How Often Does School-related Wandering Happen? Based on a 2012 study conducted by the Interactive Autism Community (IAN) through the Kennedy Krieger Institute, 29% of parents reported that their child wandered from a school or classroom. Because there is no mandate that requires schools to report a wandering or bolting incident, we suspect the actual number is much higher.
continued on page 56

... Lori McIlwain has a 13-yearold son with autism and is co-founder and Executive Director of the National Autism Association (NAA). In 2007, Lori began advocating for federal resources that would reduce and eliminate emotional trauma, injuries and deaths associated with autism-related wandering/ elopement. She has also advocated for federal laws that would eliminate dangerous restraint and seclusion practices in public and private schools. Through NAA, she has launched multiple safety initiatives and direct-assistance programs.

LoRI McIlWAIN...

www.sxc.hu

SAFETy MATTERS 55

TOP TOOLS TO COUNTER WANDERING INCIDENTS AT SCHOOL

An IEP Letter. This letter alerts the school of your childs wandering tendencies, as well as likes, dislikes, triggers, parent notification request, places your child would likely go, and instructions to call 911 immediately if your child is missing. No matter what, water and other nearby threats should be searched first. Note that an eyes on, hands off approach should be used in schools. Close supervision is necessary for wanderers, but restraint should only used as a last resort in times of imminent danger. Restraint, seclusion, and similar interventions can actually cause bolting behaviors. A sample IEP letter can be found at awaare.org. Doctors Letter. Also available at awaare.org is a sample doctors letter that can be used as a standalone tool, or to support an IEP letter. The letter can encourage close oneon-one supervisionespecially during classroom and bus transitionsas well as de-escalation techniques. It can also suggest safe ways to teach independence while discouraging risky interventions, such as seclusion practices, aversive interventions, and non-emergency restraint. If absolutely necessary, your childs doctor can diagnose your child as a wanderer using the medical code V40.31. Do not allow your childs school to use this diagnosis as reasoning to keep your child out of the mainstream classroom, or as justification to use harmful interventions. Severe wandering cases should be grounds for 1:1 assignment. Classroom Tools. Does your child follow visual prompts? Simple visual aids, such as stop signs, can be placed on the classroom door. Provide them to your childs teacher by Googling stop signs, then print and cut. Another effective and inexpensive tool is a door chime. Door chimes can be found at most Radio Shack and Walmart stores, or at bigredsafetyshop.com. Some teachers have expressed concern that door chimes may be disruptive, irritating, or that faculty may become desensitized to the sound. Encourage them to use the chimes regardless. Ive seen schools decline door chimes only to mandate them after losing a child. For everyones safety, its best to have some sort of immediate notification when the door is ajar. Functional Behavioral Assessment (FBA). Wandering and bolting are forms of communicationtypically an I want I dont want or I need. A Functional Behavioral Assessment helps identify underlying reasons for wandering/bolting behaviors. Knowing the why and addressing this through a Behavioral Intervention Plan (BIP) could provide problem-solving strategies for both home and school. Strategies can be as simple as eliminating triggers, creating coping strategies, or establishing ways for your child to explore favorite topics in a safe environment. Pre-independence Skills. Weve heard from some parents that schools will not closely supervise their child for reasons of teaching independence. My sons school allowed him to transition alone from therapy sessions to the classroom for this reason. As a result, he exited the building multiple times. If your childs school insists on teaching independence, re-direct them to the concept of pre-independence, which entails teaching safety skills, danger awareness, self-help skills, self-regulation, and survival skillsall of which can naturally lead to the safe form of independence. No teaching method should ever be in sink-orswim format. Written and agreed-upon plans should be created in an organized, thoughtful, and consistent manner that begins with understanding your child, and bases safe teaching methods on how your child will best respond. Student Profile Form. This form acts as an everyday safety guide for teachers, aides, and substitute teachers. For our son, we found there were too many things to remember on a daily basis; his likes, dislikes, triggers, and calming techniques alone needed a reference guide. It was a great way to have our emergency contact information and simple dos and donts readily available. Use the provided student profile template (http:// nationalautismassociation.org/wp-content/uploads/2013/11/ student-profile-form.pdf) and include the most essential and basic information. Update it as often as needed, and ask that it be kept in a conspicuous place for faculty use only.

SPECIAL NEEDS STUDENT PROFILE FOR EDUCATORS

STUDENTS NAME & AGE

PLACE STUDENTS PHOTO HERE

PHYSICAL DESCRIPTION

MEDICAL CONDITION(S)/ALLERGIES/DIETARY RESTRICTIONS

STUDENTS TRACKING FREQUENCY (IF APPLICABLE)

LIKES/ATTRACTIONS/FAVORITE THINGS EMERGENCY CONTACT

DOS & DONTS

TRIGGERS/DISLIKES/FEARS

IF LOST, MAY LIKELY BE FOUND AT SIGNS OF ESCALATION BEST CALMING METHODS

NOTE: immediately notify parent or caregiver of a wandering incident, even if it seems small or insignificant. If the student is ever missing, CALL 911 and search areas that pose the highest threat first, such as nearby water sources and traffic. Avoid the following: non-emergency restraint, prone or supine restraints, and seclusion practices as these can cause new behaviors or worsen existing behaviors.

ADDITIONAL INFO

56SAFETy MATTERS

When Does It Happen? The larger percentage of school-related incidents happen in fall, winter, and spring. Though numbers decrease during the summer, students who attend year-round schools, have an extended school year, or attend summer camps, remain at risk. As with all wandering incidents, the warmer the weather, the more cases there are. Based on anecdotal feedback from parents, school transitions are a prime trigger for wandering incidents, as well as new school environments. Why Does It Happen? According to the IAN study, children with Aspergers were more frequently described by their parents as anxious, while children with autism were described as happy, playful or exhilarated. In either case, wandering was goal-oriented, with the intent to go somewhere or do something. On the

school side in particular, we hear from parents that stress, triggers, and overstimulation are key reasons for their childrens wandering, as well as pursuing favorite things or special topics. What Can Parents Do To Keep It From Happening? Awareness alone is important, so the rst step should be to discuss wandering with teachers, administrators, and your childs IEP team. Outline past wandering incidents, and note special interests your child may pursue, or triggers that can cause wandering or bolting behaviors. Use the wandering data provided in this article to convey the seriousness of the issue, as well as literature from mainstream sources, such as American Academy of Pediatrics, Centers for Disease Control and organizations like NAA. Ask for safety and emergency response protocols in writing, and survey the

schools campus. Document any security breaches that may put your child at risk, including fence gaps, unlocked gates, and nearby hazards such as water sources or heavy traffic. Over the last several years, the National Autism Association has worked to establish wandering prevention and response protocols, and over the summer, joined other organizations in requesting the help of the U.S. Department of Education to address wandering in our nations schools. Until schools are better trained and have more support, parents must take extra steps to ensure their childrens safety in the classroom.
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For more information, visit www.awaare.org For questions on wandering prevention, please write to lori@nationalautism.org

WHEN A LOVED ONE WANDERS OFF,

INTRODUCING SAFETYNET BY LOJACK

THERES A WAY TO HELP BRING THEM BACK SAFE AND SOUND.

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Nothing could be more frightening than the thought of a loved one with autism or another condition wandering away. Thats why LoJack SafetyNet now offers SafetyNet, a simple and convenient service that uses proven technology for nding and rescuing people at risk who wander and become lost.

To learn more about SafetyNet by LoJack call 18774FINDTHEM (18774346384) or visit SafetyNetByLoJack.com.
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2013 LoJack SafetyNet Inc. All rights reserved. 40 Pequot Way, Canton, MA 02021, 18774346384

WALLIS: 1 IN 64 57

Bonfire Night
Having a blast with reworks and friends
B y C A R ol Stott

allis has had a busy few weeks. He is now well into the rst term at his new school, a specialist placement for children with high functioning autism, and he has been reviewing some books for Jessica Kingsley Publishers. Bonfire Night in Lode, our tiny Cambridge village, was a great success this year. Wallis came along to help prepare all sorts of goodies, including gluten-free Parkin, an old fashioned ginger-cake recipe passed down through generations of Lancashire mill workers (although with plain wheat our in those days), accompanied by bonre toffee, Lancashire Hot Pot, red cabbage and traditional black-peas with a dash of vinegar. After the reworks were safely and spectacularly dispensed with, ghost stories around the re and live music from various guests nished off the evening. Wallis seemed mainly comfortable and condent coping with the signicant social challengealthough when other children began to arrive, he gravitated towards familiar adults. During the preparations, the cooking and collecting wood for the re, he was eager to talk about his new experiences at school. Things seem to be going well. Im doing something called therapy now, he told me. Its actually called Drama Therapy, and its going to help with me being angry sometimes. Wallis has also been using an iPad App called Autism Track* to help him rate his feelings of anger.
... is a Chartered Psychologist and epidemiologist specializing in the identification and assessment of children and adults with autism and related conditions, and the co-founder of BeginningwithA, (BWA), a diagnostic training and assessment consultancy based in Cambridge, UK.

I am doing it because I have had some anger issues, he says. So every Monday and Thursday I give myself a score for how well I am getting along with my sister and how well Im doing with my shouting. At rst my score was quite high for both things, because I was angry a lot, but when I started scoring, I wanted to make the score go lower, so I made myself not think angry thoughts so much. My mum does her scores for my anger and shouting too, and if I get low scores from her then I get a reward. My mum, Dr. Carol and I work out what will be good to have as rewards and how long it will take to get them. Then we can all see how I am doing on our iPads. Dr Carol can see on hers too, without me even going anywhere. So is it helping? I asked. Well, I havent really been notied about how much its the scoring thats actually helping, or how much its just me being good, said Wallis, But Willow and me are getting along better and Im not shouting as much. Although, I have to say, its still a bit unfair, because its only me that has to stop shouting and not my sister! I asked Wallis how doing this might help other children as well. If they have anger issues, it will denitely take their
FinD Out mORe
You can keep an eye on Walliss progress on Facebook at http://www.facebook.com/ Wallis1in64 TV show at http://information.tv/ WatchLive/FlashPlayer/?id=1. Check on the Wallis 1 in 64 FB page for timings.

mind off things, he said. And it will also give them something to do when theyre bored. And what will happen next? Well, I will get to see some graphs so I can tell if my behavior is getting better, and we will show them to my new teacher too, so we can talk about it at school and in drama therapy. So far, so good. Watch this space for more to come.
*Autism Track is an iPad App from HandHoldAdaptive: Mobile Technology for the Differently Enabled. The App is designed to encourage children, teachers, parents and therapists to track targeted behaviors following intervention.

Wallis Reviews:
The Asperkids-Not-Your-AverageColoring-Book. The book is good because you can do coloring and learning at the same time, but I think it would be even better with more facts in it. Its a funny book and even more jokes would be quite good too. I liked a lot of the things in the book, but not all of them. Some was for girls. I liked the unusual things the best. I will be reading some more books and telling you about them as well. www.jkp.com/catalogue/ book/9781849059589

CARol Stott...

58 RESEARch RoUNDUp

Aluminum Adjuvants
More evidence of a vaccine/autism link, plus promising new treatment options
The review authors also note that treatment with oxytocin may help in areas including: `` Social decision making `` Evaluating and responding to social stimuli `` Mediating social interactions `` Forming social memories Examining the existing literature on oxytocin dysfunction in a variety of psychiatric disorders, the researchers cite the need for more research on the complex role of the oxytocin system in psychiatric disease and thus pave the way for developing new therapeutic modalities.
`` Cochran, D., Fallon, D., Hill, M., Frazier, J.; The Role of Oxytocin in Psychiatric Disorders: A Review of Biological and Therapeutic Research Findings. Harvard Review of Psychiatry: September/ October 2013. 21(5) 219247. doi: 10.1097/HRP.0b013e3182a75b7d
Getty Images

esearchers at the University of British Columbia provide insights on the potential role of aluminum-containing vaccines in the development of autism. Even though aluminum is a known neurotoxin, it is nonetheless used as an adjuvant in many vaccines. CA Shaw and colleagues conducted earlier ecological studies of autism spectrum disorders demonstrating a correlation between increasing ASD rates and aluminum-containing vaccines. According to the researchers, The correlation between ASD rate and Al adjuvant amounts appears to be dose-dependent and satises 8 of 9 Hill criteria for causality. This latest study provided an animal model by injecting mice with aluminum hydroxide correlating to either the U.S. or Scandinavian pediatric vaccine schedules and comparing outcomes with control mice who were injected with saline. Mice receiving the aluminum injections showed alterations in behavior, with male mice being more severely impacted than the females.

The researchers concluded, These current data implicate Al injected in early postnatal life in some CNS alterations that may be relevant for a better understanding of the etiology of ASD.
`` Shaw CA et al. Administration of aluminum to neonatal mice in vaccine-relevant amounts is associated with adverse long term neurological outcomes. Journal of Inorganic Biochemistry. 2013 Nov;128:237-44. doi: 10.1016/j.jinorgbio.2013.07.022. Epub 2013 Jul 19.

ACetaminOPHen may Play a ROle in DeVelOPment Of autism

OxytOCin: POtential Autism TReatment?

ew research published in the Harvard Review of Psychiatry suggests that the hormone oxytocin may be an effective treatment for some individuals diagnosed with autism. Oxytocin, best known for its use in initiating labor, is also an important regulator of human social behaviors, according to the research team at the University of Massachusetts Medical School led by Dr. David Cochran.

recent study points to increased use of acetaminophen (Tylenol, also known as paracetamol in some parts of the world) in genetically and/or metabolically susceptible children and pregnant women as a factor not only for developing autism but for attention decit hyperactivity disorder (ADHD) and asthma as well. According to study author William Shaw, Toxicity of acetaminophen may cause autism by overloading the defective sulfation pathway catalyzed by phenolsulfotransferase, which is deficient in autism, leading to overproduction of the toxic metabolite N-acetyl-p- benzoquinone imine (NAPQI). Increased levels of NAPQI are associated with an inability to detoxify environmental toxins which in turn increases oxidative stress leading to protein, lipid, and nucleic acid damage.

RESEARch RoUNDUp 59

In the 1980s, acetaminophen became a popular replacement for aspirin coinciding with the beginning of drastic increases in autism, asthma, and ADHD rates. According to Dr. Shaw, The characteristic loss of Purkinje cells in the brains of people with autism is consistent with depletion of brain glutathione due to excess acetaminophen usage, which leads to premature brain Purkinje cell death. While the paper by Shaw presents a potentially important relationship between acetaminophen and childhood developmental disorders, there is a dearth of studies in this area substantiating such an association. This is an interesting paper which brings together several strands of research on a possible association between paracetamol use and conditions like autism, said Autism File editorial advisor Dr. Paul Whiteley. The fact remains however, that correlation does not necessarily imply causation, and given the signicant heterogeneity which exists among the autisms, to say one factor and one factor alone is a major cause of autism is perhaps too forward a view to keep at this time.
`` Shaw W. Evidence that Increased Acetaminophen use in Genetically Vulnerable Children Appears to be a Major Cause of the Epidemics of Autism, Attention Deficit with Hyperactivity, and Asthma. Journal of Restorative Medicine. http://www.greatplainslaboratory.com

Istock

diseases, especially rheumatoid arthritis and systemic lupus erythematosus. The suggestion that the presence of brain reactive antibodies seemed to correlate with an increased frequency of maternal autoimmune conditions or their biological links represents yet another possible connection between autoimmunity and autism, at least some cases of autism, said Dr. Whiteley. This area of immune

activation and autoimmunity potentially opens up a whole range of further research questions ripe for scientic inquiry outside of just the formulation of a test for autism risk or not.
`` Brimberg L. et al. Brain-reactive IgG correlates with autoimmunity in mothers of a child with an autism spectrum disorder. Molecular Psychiatry. 2013; 18: 1171-1177.

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 challenges autism families face on a daily basis. From designing a supplement protocol to toilet training, and from creating viable workplaces for adults with autism to finding support for siblings, we gather the best possible input from physicians, therapists, nutritionists and more to present on our website.

MAR: MateRnal autOantibODy-RelateD autism

new paper from Lior Brimberg and colleagues suggests that, Mothers of an ASD child were four times more likely to harbor anti-brain antibodies than unselected women of childbearing age based on the analysis of collected data from two quite large autism study initiatives, the Simons Simplex Collection and the Autism Genetic Exchange Resource. Additionally, the ASD mothers with brain-reactive antibodies also had increased rates of autoimmune

Visit us at www.autismmediachannel.com for more information

60 QUESTIONS & ANSWERS

Taming the Gaming

Set limits to avoid computer-time overload

My son is eight years old and has autism and ADHD. Hes totally obsessed with the Xbox, to the point that nothing else interests him. Im struggling to nd anything else for him to do. When hes not on the Xbox, Im constantly battling with him as hes bored. Do you have any ideas for activities I could encourage him to do instead of the Xbox?

One thing I can say is: you are not alone. Many parents of typically developing children are struggling with the same issues. Unfortunately, technology and the gaming world
MARIA S. MIlIk...

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.

is a dual-certified teacher with ten years experience in early and elementary education. Having stepped away from the classroom to raise her five children, Cathy is now a full-time mother, advocate, and writer. When her son Ronan started to show signs of developmental delays, Cathy embarked on a mission to find answers, help and healinga mission she continues to this day. She now writes regularly about her son, vaccine injury, and parenting 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.

CAtHy JAmesoN...

RUTH E. SNYDER, RN...

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.

have become a staple in our society and many children spend time interacting with their friends via gaming. A study published in July of 2013 in Pediatrics concluded that boys with ASD spent significantly more time playing video games than their typical peers. (http://pediatrics.aappublications.org/search?fulltext=ASD+Video+ games&submit=yes&x=0&y=0) This can lead to video gaming addiction which is similar to that of a gambling or drug addiction. Excessive video gaming can cause myriad problems including a delay in developing social skills, sleep disturbances, migraines, back aches, eating irregularities, poor personal hygiene and carpal tunnel syndrome. The most effective way to limit the time kids spend on gaming is to implement a reward system. For instance, my children, (we have the same issues with gaming obsessions at our house) earn points during the week that they can use for computer/ gaming time which we allow on weekends only as it interferes with getting homework completed. They have to earn 15 points for each half hour of play. I dont make this easy for them. They have to do their weekly chores without prompts from me, have good reports from school, focus to get their homework complete and correct to the best of their ability, etc. Each item is worth one point so it ends up that they are able to earn enough points to play about two hours a day over the weekend. Dont get me wrong, its difficult to implement at first but once your son realizes that the rules wont be changing, hell accept it and life will be much easier during the week. Once kids realize that computer/gaming time is not an option, theyre forced to be creative with their time. Suggesting that they play outdoors, spend time

with a friend, play a board game or read a book will give them what they need to calm their brain and learn the very important social and personal skills theyll need as they grow older. As for getting your child to develop new interests in things other than the Xbox, read my article in the October/November issue, entitled The Skys The Limit. It will give you ideas on how to foster your childs limited interests quickly to expand in many and diverse directions. (http://www.pageturnpro.com/ Autism-Media-Channel/53827-AF52_ Aut i sm-File _OctoberNovember/ index.html#12) Maria Milik

My son is 10 and has had difficulty with riding a bike. I still have the training wheels on, and Ive been fine with the pace at which hes moving but hes getting frustrated because he doesnt have the balance/coordination yet to ride without the training wheels. Kids can be really cruel about it. One of the neighborhood children called him a baby over this. Id like to help him progress, but I know that not all people learn how to ride a bike. Any advice for helping him learn better balance/coordination while trying to ride it or for helping him take the next step so he can successfully ride without the training wheels?

Learning to ride a bike can be difficult for many children. Those with delayed motor planning, coordination problems or sensory issues have more to overcome as they try to remember the basic bike riding skills of sit, balance, pedal and go. When neighborhood kids add stress to the situation, wanting to get back on the bike may take longer and require lots more encouragement. Breaking down the steps it takes to successfully ride a bike may help the initial frustration. Making a visual schedule or social story, and watching videos of other children riding could do

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the trick. When my children were hesitant about learning to ride bikes, we knew we needed to add some additional steps in the process. We found a different kind of bike for them to practice with: a balance bike. Balance bikes, made without pedals, have a seat that is a tad lower than typical two-wheeled bikes. Giving the rider more stability, the lowered seat keeps the feet hovering just over the ground. With feet hovered, the rider can learn how to achieve better balance. He can also get instant feedback when hes ready to use his feet as he controls how hard he wants to push off the ground to get moving. With lots of practice a n d a g re a t a m o u n t o f cheerleadingthree of my children successfully transitioned to riding two-wheelers after spending some time on a balance bike. If you cant buy a balance bike, or if youre unable to remove the pedals from a regular bike without ruining it, there are other options. Consider nding a group called iCan Shine. iCan Shine (formerly, Lose The Training Wheels) collaborates with local organizations and individualsto conduct almost 100 iCan Bike programs in 32 States and 2 Provinces in Canada serving nearly 2,500 individuals with disabilities each year. The impact of learning to ride a bicycle independently, and our high level of success in helping individuals with disabilities accomplish this feat, continues to drive demand for our programs and fuel our growth. (http://icanshine.org/) Some children may not be ready either developmentally or physically to tackle riding a bike. If learning to ride on his own isnt yet an option, check out the Buddy Bike. The Buddy Bike is a tandem bicycle (bicycle for two) that places the smaller rider in the front seat while the rear rider controls the steering. Its features make the Buddy Bike especially benecial for children with special

Those with delayed motor planning, coordination problems or sensory issues have more to overcome as they try to remember the basic bike riding skills of sit, balance, pedal and go.

them. Ask their parents to join the conversation too. Initially, you might want to talk to them without your child present. Be honest. Explain that your child has some limitations. Let them know that your childs needs are great and that what they are saying isnt helping. Instead of a smooth transition, theyve created a major road block. Then, enlist those kids to help! Since theyve already spent time noticing your child, offer them the chance to turn their focus around. Ask them to help model bicycle riding and to turn their discouraging words into cheers: You can do it! Good try! Try it one more time, buddy. Youll get there! Teach them what to say with a reminder that they too must have needed help learning how to ride a bike, and wouldnt it be great if they could teach someone else this skill that has become quite natural for them. Hopefully these suggestions will help build a positive relationship for your child and those neighborhood kids. With some time, condence and extra help, maybe theyll all go bike riding together someday. Cathy Jameson

needs. The Buddy Bike offers adaptive outdoor recreation and therapeutic activity to those who may not otherwise be able to experience the thrill of riding a bicycle. (http://buddybike.com/) Now, about those kids with their unkind remarks. Instead of shunning them and their rude comments, talk to

My son with autism is in third grade. He has been at the same school, with the same schedule, and for the most part he has been working with the same staff and students in his class. With the way that the school is set up he even is in the same classroom as his previous two years. I thought with the need for consistency and routine this would be the best year he has ever had, but instead it seems to be his hardest. Any insights and suggestions would be appreciated.

Thank you for bringing up this question because there are so many points that can be addressed. While there are many reasons to support the belief that routine, structure, and the same environment are beneficial for an individual with autism, we tend to

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forget some of the good reasons why we sometimes need to change things up. And, sometimes we miss some of the subtle things that have changed without us realizing it. If your childs abilitiesacademic or behavioralare beginning to regress, consider this a f lag. Behaviorally, it is his way of communicating that something may be seriously wronghe just doesnt know how to say it. I would suggest rst visiting the school while it is in session and observe your child without him knowing you are there. Look and experience it for a day to get a sense of what may be different. There may be something simple such as a staff member wearing a new scent that is irritating to your child. Or maybe items in the classroom have been moved aroundthis often happens over the summer and may be a source

of frustration that your son cannot easily articulate. There might also be something in his physical makeup that has changed.

Always be vigilant for underlying medical issuesoften when our children become ill, the medial condition isnt investigated but instead tossed off as part of the autism. Most of all, in my opinion and from what I have been taught, is that your sons current grade level is when the educational foundation has been established and now is being built upon. If there are any cracks in the foundation, building up will be difficult. In other words, specic learning disabilities, besides the autism, will create more issues and will present in grades and/or behaviors. Many people have great difficulty finding help for these learning disabilities. My family has gotten a lot of assistance from specic individualstutors and educational therapistswho have helped tremendously on our journey. Ruth Snyder

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The Next Step

Standing at a crossroad and weighing the options
By mAe FRoSt

ometimes you end up in a place you never expected you would. Weve had a swift increase in challenging behavior over the past year that has overwhelmed everyone. The clearest thing we can tell is that our son is very unhappy. Hes in the grip of unprecedented compulsions and massive sensory overload. Weve pulled together everyone who knows, loves and works with him and weve brainstormed, put solutions in place, reviewed, brain stor med again, round and roundand not a single one of us knows for sure why things have gone off the rails so rapidly. In a very short period of time, Ive gone from looking ahead to his secondar y education with plenty of time to spare, to being in the situation where he may need an autism specific residential school. I cant imagine it: my precious little boy away from us for endless days and nights. Recently, I did have a moment. I sat dow n amongst t he shredded paper and chaos and thought. Honestly, how long can we keep this up? And can we really cope if it gets any worse? Hes getting bigger, hormones are on the horizon, and I just know theres a load of stuff on the way that were not in the least prepared for. I gured we might have to look at our options as his needs were clearly changing. So Ive looked at the schools one was perfectI could see he
is mom to two fabulous children, one of whom has autism. She has dim and distant memories of wearing a suit, working in management and having things like coffee and lunch breaks. These days, she mostly spends her time running in pursuit, and clearing up. But in between, she writes, runs a small online store importing clothing for children with sensory processing disorders, and is a trustee for a charity.

If I won the lottery, Id set up everything he needed right here, extend the house, nd the right people and never let him out of my sight until he told me he was ready for it.

mAe FRost...

might be happy there. Its a perfectly tailored environment with all the support and skilled staff he would need. However, just because it exists doesnt mean we can get him in therewell have to navigate the smoke and mirrors of the Education Department first. Theres also an

unbearable choking sadness that it should come to this. Something no mother would ever want: facing up to a world in which her son may be better off in the caring hands of others. Im not going to list his behaviors in an attempt to justify because I know some will be saying, I would never and I know that because I did too. Ill only say that if I could keep him safe and secure, happy and learning a little each day, or even at least stable, I would be content. Were a long way from that right now, and despite a huge support team, we are not meeting his needs. Trust your instinct, I would say to someone else. My instinct is torn apart. He needs more than he can get in the family home. If I won the lottery, Id set up everything he needed right here, extend the house, nd the right people and never let him out of my sight until he told me he was ready for it. Im afraid these people wont look after him as they should; weve all seen the awful undercover reports from disreputable places. How would I know? Will he be able to tell me if they dont treat him right? Will he be any better off or will it be a big ght and a lot of stress for him to still feel the same? Looking at the places and meeting the staff has dampened my fears; I can see for myself a friendly place and happy kids. Making it real has helped. But this is still agony. So, the big meeting looms. A room full of peoplesome I know, some I dont. Can I trust them to advise me on what is best for him? What is their motivationmy son or their budget? Do they know enough, have enough experience to know whats best for him? The truth is not a one of us can say for sure what is best for himwe just have to trust and hope and try.

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ITS SAID THAT ON AN AVERAGE DAY, A PERSON CAN SPEAK 16,000 WORDS. ID GIVE ANYTHING IF MY CHILD COULD SPEAK JUST ONE.
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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.

TO DONATE OR LEARN MORE, VISIT NATIONALAUTISM.ORG.