Issue 36 2010 $8.95

The Autism File covering Autism, Asperger’s, ADHD, ADD and other related disorders

Also in this Issue:

HealtHy Gluten- aND Dairy-free eatiNg tips

PlayinG & learninG sOCially

takiNg Care Of nails & Hair

The BaTTle To Save

Biomedical TherapieS

a Different Way of success in lonG-term relationsHiPs

settinG uP an autism-relateD cHarity

oVercominG sensory issues

an interVieW WitH Dr. anDreW WaKefielD

SPECIAL INTERNATIONAL ISSUE

BE PART OF THE autism motHers CALENDAR & BOOK

6 • THE AUTISM FILE 36 2010 www.autismfile.com

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Issue 36 2010

advocacy58 SETTING UP AN

AUTISM-RELATED CHARITY by Shannon King Nash, Esq., CPA

104 AUTISM RESEARCH INSTITUTE UPDATE: NEWS YOU CAN USE by Stephen M. Edelson, PhD

asperger’s syndrome94 PEOPLE ON THE SPECTRUM: A DIFFERENT

WAY OF SUCCEEDING IN LONG-TERM RELATIONSHIPS by Stephen Shore, EdD

biomedical10 PDD AND THE GUT – A NATUROPATHIC

PERSPECTIVE by Koren Barrett, ND

28 THE BATTLE TO SAVE BIOMEDICAL THERAPIES FOR CHILDREN WITH AUTISMby Jeff Bradstreet, MD, MD(H), FAAFP

50 HEPATOCYTE GROWTH FACTOR (HGF): MARKER FOR NEUROLOGICAL DISEASE INCLUDING AUTISM? by A. J. Russo, PhD

78 HAS YOUR CHILD WITH AUTISTIC SYMPTOMS BEEN PROPERLY SCREENED FOR A SUBSET OF MITOCHONDRIAL DISEASE KNOWN AS OXPHOS? …PROBABLY NOT. by Alyssa Davi

92 ALEX HOPKINS by Jeff Bradstreet, MD, MD(H), FAAFP

106 LOWER AUTISM TREATMENT EVALUATION SCORES (ATEC) CORRELATE WITH DIETARY TRANSFER FACTOR USE IN AUTISM SPECTRUM DISORDERS (ASDS), PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDERS ASSOCIATED WITH STREPTOCOCCAL INFECTION (PANDAS), AND PRIMARY IMMUNODEFICIENCY (PI) DISEASE/CD19 DEFECT: TWO CASE STUDIES. by Suzette Lawrence, MSN, CNM

diet & nutrition54 HEALTHY GLUTEN- AND DAIRY-FREE

EATING TIPS – GOOD FOR THE WHOLE FAMILY! by Sueson Ross Vess

98 HOW TO FIX THE AUTISM EPIDEMIC IN SIX MONTHS OR LESS by Judy Converse, MPH, RD, LD

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www.autismfile.com THE AUTISM FILE 36 2010 • 7

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www.autismfile.com contents

editorial8 POLLY’S PIECE: “GOOD” IS THE TRUTH,

AND YOU CAN NEVER ARGUE WITH THE TRUTH by Polly Tommey

education & therapies14 PRACTICAL APPROACHES TO TAKING

CARE OF NAILS AND HAIR: TRAINING AWAY FEAR AND RESISTANCE by Jane Miller

36 PEER PALS: PLAYING AND LEARNING SOCIALLY by Alanna Apap, BCBA

62 OVERCOMING SENSORY ISSUES WITH WEARING GLASSES by Carrie Sypherd, O.D.

historical perspective26 COZY TIMES

by Alli Edwards

48 AUTISM 299.00: BREAKING THE CODE PART 4 by Beth Runion, RHIA, CMT

interview20 THE WAKEFIELD PARADOX AN

INTERVIEW WITH ANDREW WAKEFIELD, MB, BS, FRCS, FRCPATHby Dan E. Burns, PhD

56 TRAILBLAZERS: TWO STRONG WOMEN – AREVA MARTIN AND SHANNON NASHby Sandra Williams, PhD

86 LEARNING FROM ANIMAL FACTORY. LESSONS FOR AUTISM PARENTS. AN INTERVIEW WITH DAVID KIRBYby Dan E. Burns, PhD

living with autism68 CREATING SUCCESSFUL

OPPORTUNITIES IN SCHOOL AND AT HOME FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS − THE SMALLEST DETAILS MAKE THE BIGGEST DIFFERENCEby Cathy Purple Cherry, AIA, LEED AP

96 HOME FROM HOME CARE: CREATED BY PARENTS TO MAKE A DIFFERENCE by Rachel Miller

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The aUTiSm File direcTorYthe autism file Directory is free to parents and families that need to get help in all areas of autism. It features details of autism organizations, charities, adult facilities, biomedical interventions,conferences and events, diagnostic labs, schools, food suppliers, holidays, nutritionists, practitioners (Defeat Autism Now!), specialist suppliers, presentations, and research papers.

For more information on how you can access this directory, please go to www.autismfile.com and click onto “Directory.”

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Find out what it’s all about at www.autismfile.com

parent’s perspective33 BIOMEDICAL INTERVENTION: A GODSEND

TREATMENT APPROACH UNDER FIRE by Sally Kirk

44 JOURNEYING FROM BARBADOS INTO THE NEW WORLD OF AUTISM AND BACK! by Debbie Smith

64 CURANDO EL AUTISMO: BRINGING HOPE TO LATIN AMERICA by Lorna Ortiz, PhD

76 ONE FAMILY’S JOURNEY by Wanda Malone

90 ALEX’S JOURNEY FROM FRANCE TO AMERICA AND BACK TO HOPE AND HEALTH by Christine Roffi

102 EPILEPSY AND AUTISM: OUR EXPERIENCE by Cheryl Fields, MBA

regulars4 AUTISM MOTHERS

18 QUEENS COUNTY PARENTS AUTISM COALITION by Beth Ciardi

114 THE AUTISM FILE DIARY

114 THE AUTISM TRUST

14 • THE AUTISM FILE 36 2010 www.autismfile.com

Practical Approaches to Taking Care of Nails and Hair: Training Away Fear and ResistanceBy Jane Miller

magine having someone come at you with scissors to cut your nails or hair. Imagine someone turning on clippers to give you a buzz cut. Imagine the metal glint of the scissors and the menacing drone of those

clippers. Now imagine how you would feel if you didn’t know what was going to happen next.

You would be afraid. And you would want to leave. But what if people wouldn’t let you? What if they held you down until the job was complete and then acted as if everything was okay?

It wouldn’t be okay because you wouldn’t be less afraid the next time. You’d be more afraid. And it wouldn’t be just the procedure you would fight. It would be the way you were treated, being held down or put in a papoose board to complete that care.

That’s often what happens to people on the autism spectrum, to people with sensory issues, and to anyone with a disability. People often assume that because they have challenges, they cannot learn.

Retrain, not RestrainBut that assumption is wrong. A U.S. nonprofit based in Delaware called Practice Without Pressure is working to change both the perception of people with disabilities and the ways in which they receive services.

Practice Without Pressure helps people, especially those with disabilities, overcome their fear of medical, dental, and personal care procedures so that they can complete routine care without restraints and with confidence. That includes both haircuts and nail care.

For company founder and president, Deborah Jastrebski, the mission is a personal one. “My son, Marc, who has Down syndrome, is the reason PWP exists,” she said.

“Marc had many surgeries as a youngster and became fearful of anything and anyone in a clinical setting. It got so bad when he was 12, that during an allergy test, the blood vessels in

education & therapies

his face were breaking due to his hysteria. After a half-hour, he had only two picks done on his back. And nothing I did made it easier or better. I knew then that I had to find another way.”

Positive PracticeThat other way became what is now Practice Without Pressure. Through its Practice Model™, people practice what they fear at their own pace. Through modeling, positive behavioral supports, incremental practice, visual sequencing cards and rewards, people learn to complete procedures they once feared with ease.

“Just two weeks after working with Marc in this way,” Jastrebski said, “he was able to complete a blood draw for the first time in his life without being held down. It was huge.”

Jastrebski saw her son duplicate this success through practice in many procedures, including dental and haircuts. And it opened her eyes to his ability and his capacity to learn.

It’s something PWP sees in all their clients. Karen Bashkow, a pediatric intensive care nurse, who works as PWP’s program director, sums it up this way: “We know that expectations, either positive or negative, have a tremendous effect on the outcome of any process.”

So does uncertainty. For people on the autism spectrum, not knowing what to do can have a devastating cumulative effect. Said Kristen Herzel, PhD, a developmental neuropsychologist in Swarthmore, PA, “Many of the folks that are on the spectrum really don’t know how to handle a new situation. They’re very easily overwhelmed. They have trouble figuring out what to do, and that’s very anxiety provoking. We know that anxiety is something that’s going to get worse if you avoid a situation, and it’s also going to get worse if you’re forced into a situation where you’re anxious and you never mastered your anxiety in that situation. So I think things like holding people down doesn’t help with the anxiety: in fact, it’s traumatic and can be expected to make that anxiety worse.”

Jane Miller is Director of Outreach and Marketing for Practice WithoutPressure (PWP). She is also the parent of a child on the autism spectrum andknows firsthand how PWP can help people achieve what others think isimpossible. Her son’s success through Practice Without Pressure led her tovolunteer and now work for the organization to bring the benefits of PWP to more people and in doing so, improve both the expectations and services provided to people with disabilities.

As renowned autism expert Tony Attwood is quoted as saying, “Autism is anxiety looking for a target.” That would put a big fat bulls-eye on medical, dental, or personal care procedures that people fear.

“Basically,” Herzel stated, “If you make a situation into a negative experience, you’re going to teach the person that that’s a situation that should be avoided.”

Have High ExpectationsPractice Without Pressure does the opposite. “Because we presume competence, we reward people right from the start in the way we treat them. And they always respond,” Bashkow said.

For parents who want to help their children at home with nail care or haircuts, that’s the first step. “When parents come to us for help, we understand what they have experienced. And that experience has taught them not to expect much of their son or daughter. So we help them see ability where they may have only seen difficulty,” Jastrebski said.

It can be a hard sell. Parents often are skeptical at first that their child or adult can change, especially if that person is non-verbal or profoundly challenged. Bashkow herself was skeptical until her teenage son, Ben, who is non-verbal and has severe autism, completed dental x-rays without restraints after four practice sessions with PWP.

“We don’t let someone’s label or behavior define them,” Jastrebski said. “We give them the opportunity and the tools to change. We empower them to take control of a situation they have feared and have been successful with people of all ages and abilities.”

But if attitude is important, so is environment. Carol Stock Kranowitz, writing in her book, The Out-of-Sync Child, says at school, “The child’s primary need is to feel safe. When he feels safe, his brain is available for learning.”

Bashkow has seen this firsthand in teaching people to deal with fear. “In order for people to learn, they have to feel safe and part of that is learning what is expected of them,” Bashkow said.

That’s where modeling comes in handy. PWP begins every practice session this way by first showing a procedure on a family member or caregiver. It fulfills two purposes. “It lets the fearful person know they do not have to participate right away and helps them relax,” Bashkow said. And it follows another Kranowitz rule: “Don’t make your child do things that distress him.”

Show the Process, then the PartsModeling also gives a fearful person the first calm

view of a procedure from start to finish. “No matter how many times a person completes a procedure, if it’s done under duress, chances are good they won’t have processed anything except their fear,” Bashkow said. Letting them experience a procedure without having to participate in it begins to provide them with a perspective they couldn’t have before.

Then the practice can begin. PWP uses sequence cards that identify each step of a practice. As a person practices a procedure, they have a card that duplicates their actions. These cards are especially effective for people with autism, who often are visual thinkers and learn by direct experience.

Making allowances for brain processing speed is crucial, too. Susan Dodd, writing in Understanding Autism, recommends visual cues and experiential learning, but she cautions against moving too quickly. “For some individuals, it may take from 5 to 30 seconds, or even longer, for information to be processed.” Like the tortoise in Aesop’s Fables, slow and steady wins the race.

For each mastered step, a person receives a preferred treat as a reward and recognition of effort, often a sweet. For Bashkow’s son, though, the reward was a Hershey’s Kiss and a pickle.

But Jastrebski cautions, it’s not a race to the finish, but a pace set by the fearful person that makes the process work. “When we allow someone who has been held down or put in a papoose board to take a break during practice, we give them control in a situation they never had before,” she said. “It builds trust, and with trust comes progress and success.”

People also begin to trust when they feel understood. “We know that behavior has a purpose. When we

start to work with someone, we learn as we go to recognize

the sometimes subtle cues they give us that they need a break or

are reaching a point where a session

education & therapies

Karen Bashkow, a pediatric intensive care nurse, who works as PWP’s program director, sums it up this way: “We know that expectations, either positive or negative, have a tremendous effect on the outcome of any process.”

16 • THE AUTISM FILE 36 2010 www.autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE

needs to end,” Bashkow said. “And we honor that communication.”

Nail Care CombatFor David Birney, a 40-year-old man who is blind and mentally disabled, communicating his needs has always been a challenge. Because his hands serve as his eyes, he always resisted people touching them. For him, nail care was a nightmare.

According to his parents, George and Virginia Birney, “From infancy, David distrusted everyone and would fight grooming and medical procedures…it has taken as many as seven people to try to examine him or sedate him.”

At some point in his life, David’s hands were shut in a door. That experience made him even more defensive. “He was so protective of his hands that even when he had Benadryl and appeared to be asleep, he wouldn’t let us trim his nails. His nails were cut when he was sedated for dental work,” his parents wrote.

For staff at his day facility, David’s nails were, to say the least, a source of friction. Scratches, bruises, and broken glasses were a result of David’s resistance to routine care.

Around the time David turned 36, his parents, with whom he lives, began to explore options to sedation and discovered Practice Without Pressure. “After just a few sessions, David began to cooperate by letting us touch, soak and file his nails,” his parents said. By respecting his personal space, gaining his trust and explaining through touch and talk the steps that would make his nails softer and easier to trim, David progressed from defensive to accepting in a short period of time. For someone who can see, cards would be used in addition to hand-over-hand support to teach steps leading to easier nail care.

Haircut HellFor others, though, learning to trust and learning how to complete procedures may take time, especially when it comes to haircuts. “Believe it or not, haircuts are the most difficult procedure we practice,” Bashkow said. For children and

adults on the autism spectrum, it can literally hurt to comb their hair, so cutting it becomes a battlefield. Add the irritating noise of electric trimmers to that sensory stew, and you have a tantrum waiting to happen.

Haircut hell began for Philip and Irene Campbell of Wilmington, Delaware, when their son, John, who has moderate autism and global developmental delay, turned two. Soon, home became the barbershop.

“It would take two of us to cut his hair,” recalled Irene Campbell. “Usually, I would hold his arms down to his side, or sit him on my lap, wrap my legs around his legs, wrap my arms around his arms. Phillip would hold his head and use clippers. It would take more than an hour with a lot of sweating and crying.”

By the time John turned nine years old, the situation began to take its toll. “When he got older, we would wrap him in a blanket. I would lie on top of him and Philip would shave one side of his head and then we’d do the other side the same way. It got harder and harder. Then no reinforcer was strong enough for him to stay still,” she said.

As is often the case, desperation led the Campbells to Practice Without Pressure. With time and patience, John began to improve. But it wasn’t easy.

“When I first started to work with John, I couldn’t go anywhere near his hair, even with a comb,” Bashkow said. “I had to start at the floor and work my way up, touching his leg with the comb, then his arm, counting each tap as I went until I reached his head. At first, that’s all he would tolerate.”

But using that staged approach with rewards led John to accept scissors and clippers. With repeated practice, he became less fearful and more capable. After about 18 sessions with PWP, John let PWP hair stylist, Patty McMinn, cut his hair. With breaks and time off to enjoy reinforcers, the session took two hours. But the outcome made it worthwhile: John completed his first haircut in one sitting without being held down or restrained in any way.

“For Philip and me,” Campbell wrote, “there are no words to express the emotions involved in this accomplishment and the hope that it brings. For John, it is life changing. “ In fact, John sat in front of the computer for his next haircut, which took his mom only a half-hour. Her consistency with the PWP process continued his success.

Though practicing a feared procedure can be challenging, the rewards are great. It can significantly reduce family stress and bring a sense of control and confidence to an individual with autism for whom the world can be a confusing place. As Dr. Herzel said, “Having the opportunity to practice to learn how to manage your anxiety and then feel a sense of mastery over anything is essential to the human experience. That’s what people need to do to feel competent.” What better gift could we give our loved ones than helping them lead better lives? For them, practice makes perfect sense.

education & therapies

People also begin to trust when they feel understood.

www.autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE THE AUTISM FILE 36 2010 • 17

education & therapies

Though practicing a feared procedure can be challenging, the rewards are great. It can significantly reduce family stress and bring a sense of control and confidence to an individual with autism for whom the world can be a confusing place.

Practice RulesPractice Without Pressure applies the following principles to support individuals, families, and professionals who come to PWP for help. As families and professionals consider ways to support a person who fears procedures, never discount the value of a positive approach to make progress.

1. Always presume competence in the person you teach.

2. Give a person time to learn and process what you teach.

3. Do not impose deadlines on the process.

4. You are teaching people to be brave. This is hard work.

5. Ask yourself, before you begin teaching, how you feel about the process. Your attitude will determine the outcome.

6. When you ask someone to do something they fear, they must learn to trust you.

7. When learning begins, it becomes a partnership. Reward yourself and the person you teach with praise. It will help you both progress.

8. Value the smallest achievement, because the big ones will follow.

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