1 in 110 The Center for Disease Control's most recent data show an average of 1 in 110 children have an autism spectrum disorder (ASD). Is now finally the time to classify autism as a crisis and an epidemic in the United States?â€‚ Page 16
in this issue
How will I deal with this diagnosis? It is imposssible to prepare yourself for all the tribulations that will be undoubtedly occur while parenting a child with autism.
1 in 110
The startling statistics about the rate of autism in the United States.
Making the Most of Therapy
resources & references
nutrition & well-being
on the road
Photograph Courtesy of Teri Abramson
Applying therapy to your child's daily routine is crucial for their development.
Taking Care of You Remember that you are not alone! Every family is confronted with life’s challenges… and yes, autism is challenging… but, if you look closely, nearly everyone has something difficult to face in their families.
tips for parents Learn to be the best advocate you can be for your child. Be informed. Take advantage of all the services that are available to you in your community. You will meet practitioners and providers who can educate you and help you. You will gather great strength from the people. Don’t push your feelings away. Talk about them. You may feel both ambivalent and angry. Those are emotions to be expected. It’s OK to feel conflicting emotions. Try to direct your anger towards the disorder and not towards your loved ones. When you find yourself arguing with your spouse over an autism related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is the autism that has you so upset and angry. Try to have some semblance of an adult life. Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse, and refrain from constantly talking about autism. Everyone in your family needs support, and to be happy despite the circumstances. Appreciate the small victories your child may achieve. Love your child and take great pride in each small accomplishment. Focus on what they can do instead of making comparisons with a typically developing child. Get involved with the Autism community. Don’t underestimate the power of “community”. You
may be the captain of your team, but you can’t do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive.
tips for brothers & sisters Be proud of your brother or sister. Learn to talk about autism and be open and comfortable describing the disorder to others. If you are comfortable with the topic…they will be comfortable too. If you are embarrassed by your brother or sister, your friends will sense this and it will make it awkward for them. If you talk openly to your friends about autism, they will become comfortable. But, like everyone else, sometimes you will love your brother or sister, and sometimes you will hate them. It’s okay to feel your feelings. And, often it’s easier when you have a professional counselor to help you understand them – someone special who is here just for you! Love your brother or sister the way they are. While it is OK to be sad that you have a brother or sister affected by autism it doesn’t help to be upset and angry for extended periods of time. Your anger doesn’t change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings too. Spend time with your Mom and Dad alone. Doing things together as a family with and without your brother or sister strengthens your family bond. It’s OK for you to want alone time. Having a family member with autism can often be very time consuming, and attention grabbing. You need to feel important too. Remember, even if your brother or sister didn’t have
A Call for Support for Autism Parents BY LISA JO RUDY We need better strategies for dealing with the stress Autism brings, creating a support team around us, communicating our emotions to friends and loved ones, getting and asking for respite care, and more. We need time to take care of our physical health, our nutritional needs, and honestly, just to get some sleep or have a good cry. Perhaps we could allocate at least some of the money from our support groups.
Photograph Copyright: Jonathan Fields
As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members.
Vacationing in Cape Cod. Family time during vacations provides parents and siblings an opportunity to breakaway from the daily routine.
autism, you still need alone time with Mom and Dad. Find an activity you can do with your brother or sister. You will find it rewarding to connect with your brother or sister, even if it is just putting a simple puzzle together. No matter how impaired they may be, doing something together creates a closeness. They will look forward to these shared activities and greet you with a special smile.
tips for grandparents & extended family Family members have a lot to offer. Each family member offers the things they have learned to do best over time. Ask how you can be helpful to your family. Your efforts will be appreciated whether it means taking care of the child so that the parents can go out to dinner, or raising money for the special school that helps your family’s child. Organize a lunch, a theatre benefit, a carnival, or a card game. It will warm your family’s hearts to know that you are pitching in to create support and closeness. Seek out your own support. If you find yourself having a difficult time accepting and dealing with the fact that your loved one has autism, seek out your own support. Your family may not be able to provide you with that kind of support so you must be considerate and look elsewhere. In this way you can be stronger for them, helping with the many challenges they face.
Even “high functioning” autism is challenging for parents. Parents need to maintain a structured schedule for their child and themselves. “Low functioning” autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends and extended family.
Be open and honest about the disorder. The more you talk about the matter, the better you will feel. Your friends and family can become your support system… but only if you share your thoughts with them. It may be hard to talk about it at first, but as time goes on it will be easier. In the end your experience with autism will end up teaching you and your family profound life lessons. Put judgment aside. Consider your family’s feelings and be supportive. Respect the decisions they make for their child with autism. They are working very hard to explore and research all options, and are typically coming to well thought out conclusions. Try not to compare children (this goes for typically developing kids as well). Children with autism can be brought up to achieve their personal best. Autism affects people of all social and economic standing. There is promising research, with many possibilities for the future. Share the sense of hope with your family while educating yourself about the best ways to help manage the disorder.
Would you like to connect with families affected by autism in your local community? Do you want to share your personal experiences? Please visit parentingautism.com/parentsspeak for more information.
resources & references
Babies & Boomers: CD & Guide with Special Guests An interactive program for grandparents and grandchildren. A lyrical approach to encouraging speech & language skills through song and dance! › www.babiesandboomers.com
DT Trainer The DT Trainer is an evidence-based, direct instructional software program with over 160 curriculum content programs, hundreds of motivating reinforcers and data tracking/assessment features. › www.dttrainer.com
HearBuilder: Following Directions Webber HearBuilder Following Directions is the all new innovative, evidence-based interactive software program that gives students a systematic way to improve their auditory and following directions skills. Students learn as they become Master Toy Makers and build their own Toy Central factories. › www.hearbuilder.com
Hiyah.net: Free Educational Software for Children This free educational software is made for children 18 months to 4 years of age (or higher for children struggling with language delays due to autism). › www.hiyah.net
Independent Speech Highly engaging and motivating online speech therapy for school-aged children and adults. › www.independentspeech.com
Innovative Speech Therapy Innovative Speech Therapy is dedicated to offering unique effective speech therapy for children and adults, and online coaching and training for parents. › www.innovativespeech.com
A child teaches without intending to . . . . Having severe autism does not stop the author's son from teaching her some of life's most valuable lessons. "The Accidental Teacher" is a heartfelt memoir about self-discovery rather than illness and uses insight and humor to weave a tale rich with kitchen table wisdom. This book is a must-read for anyone who has been personally touched by a major life challenge. Annie Lubliner Lehmann, a freelance writer for more than 25 years, has published articles in many newspapers and magazines, including The New York Times and Detroit Free Press. Lehmann resides in Michigan with her husband and two of her three children. Her eldest son, 24, has severe autism, lives at home and inspired this memoir.
This book began as a thought: What if one of my good friends learned her child had autism? What would I say? How would I use my experience to help her navigate this new road? Thus, began my project of writing down words of encouragement and support and, best of all, real-life ideas and suggestions to help guide her [you] through this new journey. Between you and me, I am very thankful for what life has brought my way because it has made all the difference. I have two boys diagnosed with high functioning autism. When my oldest son was first diagnosed, I had no idea what autism really was. This, of course, is no longer the case. We're all in this together-learning, supporting, and laughing. Relax and know that autism is an incredible journey.
Would you like more information about the latest books and resources available? Visit parentingautism.com/ books to access our entire database containing book reviews, research studies as well as newspaper and magazine articles. Parenting Autism wants to hear from you. Send us your critiques of the latest books, studies, and articles. Check out our website for more information.
Photograph Courtesy of Barnes & Nobles
Educationcity.com is the leading online teaching and learning resource. Our mission is to delight children across the globe with the opportunity of learning, to engage and inspire children in their personal development, and to empower parents to nurture our future generation! › www.educationcity.com
A Father's Quest The remarkable, inspiring true story of a father willing to go to the ends of the earth to heal his son. In this intense, polished account, the Austin, Tex., parents of an autistic boy trek to the Mongolian steppes to consult shamans in a last-ditch effort to alter his unraveling behavior. Author Isaacson (The Healing Land) and his wife, Kristin, a psychology professor, were told that the developmental delays of their young son, Rowan, were caused by autism. Floored, the parents scrambled to find therapy, which was costly and seemed punitive, when Isaacson, an experienced rider and trainer of horses from his youth in England, hoisted Rowan up in the saddle with him and took therapeutic rides on Betsy, the neighbor's horse. The repetitive rocking
Behavior Tracker Pro
and balance stimulation boosted Rowan's language ability; inspired by the results, as well as encouraged by such experts as Temple Grandin and Isaacson's own experience working with African shamans, Isaacson hit on the self-described crazy idea of taking Rowan to the original horse people, the Mongolians, and find shamans who could help heal their son. The family went in July, and over several rugged weeks rode up mountains, forded rivers and camped, while enduring strange shamanic ceremonies. Isaacson records heartening improvement in Rowan's tantrums and incontinence, as he taps into an ancient, valuable form of spirit healing.
Behavior Tracker Pro is an iPhone/Ipod Touch application that allows BCBAs, behavioral therapists, aides, teachers or parents to track behaviors and graph them. â€şâ€‚www.behaviortrackerpro.com
nutrition & well-being
Nutrition on the Web
GF Meals Gluten-free, ready-to-cook meals shipped nationwide to your door! › www.gfmeals.com GFCF Diet Cookbooks, vitamins, and info on where to begin with Dietary Intervention Treatment for Autistic Spectrum Disorders. › gcfcdiet.com Gilbert's Gourmet Goodies Our delicious cookies do not contain any gluten, milk, wheat, nuts, peanuts, soy, corn, corn syrup, preservatives, or trans fat. They come in 3 flavors chocolate chip, sugar, and snickerdoodle. There is also cookie dough available in chocolate chip and sugar dough. › www.gilbertsgourmetgoodies.com Gluten-Free Choice Celiac disease and gluten-intolerance education and support services. › www.glutenfreechoice.com Kirkman Labs Kirkman produces specialty nutritional supplements for those with special dietary needs, which can be ordered online. Specializes in casein free, gluten free, and hypoallergenic supplements. › www.kirkmanlabs.com The Little Aussie Bakery All taste, no gluten! This bakery in San Antonio creates delicious gluten-free breads and desserts for the many people who are dealing with dietary issues without the skills necessary to produce something that is gluten-free. › www.thelittleaussiebakery.com
Medikidz Medikidz is the world's first Medical Education publisher for children. We explain medicine to young people in a way that they can understand. Written by doctors, for kids! › www.medikidz.com Natural Foods Education Eating naturally healthy meals has never been easier! There's no reason to feel confused or intimidated about how to eat more healthfully. A wide variety of natural food meal plans will guide you on what to buy, how to prepare it, and why it's good for you. › www.jennette-turner.com Nutrition Balance for Life! Our mission is to empower special needs children and adults with the knowledge of preventive nutrition so they can take control of their own health. › nutritionbalanceforlife.com The Recipe Renovator Food blog with gluten-free recipes. I love the creative challenge of taking a naughty recipe and turning it into something amazing! › www.reciperenovator.com Sean's Food Sean's Food gives autistic kids a taste of the sweet life with gluten-free cookies, cupcakes, muffins, loaves, and cake that keep children happy and healthy. › seansfood.com Waiora's Natural Cellular Defense Waiora's Natural is clinically formulated to help support a healthy immune system, remove heavy metals and toxins, and balance your body's pH levels. It is natural, non-toxic, and safe for long-term use. › www.waiora.com
Would you like more information about nutrition and well-being for your child? Visit parentingautism.com/nutrition for great recipes and excercise routines that your autistic child is sure to enjoy along with the rest of the family! Be sure to comment about our recipes online.
The KidFriendly ADHD & Auitsm Cookbook PAMELA COMPART The best “kidfriendly” recipes and guide to the gluten-free, milk-free diet for ADHD and autism just got better. In addition to updates on new research and findings, readers will find recommendations from the authors for packing school lunches and snacks, plus 100 brand new recipes! One of the challenges that parents face is coping with children who have picky appetites and crave the very foods that affect their behavior, focus, and development. The other challenge is finding ways to get their children to eat healthy foods.
Photograph Courtesy of Kurhan
FoodFacts.com FoodFacts.com is your go-to site for healthy living and help to easily manage food allergies. With over 75,000 food products, you'll find complete and comprehensive ingredient and nutrition information you can depend on, allergy-free foods, customized recipes, quickly created shopping lists, and more! › www.foodfacts.com
is living gluten free right for you ? For decades, the gluten-free, casein-free diet (GF/ CF diet) has been a popular approach by parents attempting to improve the cognitive and behavioral symptoms of their childrens’ autism. Some (but not all) research suggests that one feature of autism spectrum disorders is reduced enzymatic activity and increased permeability of the intestinal barrier, both of which can lead to potential gastrointestinal problems. Given these digestive disorders, one prevailing theory holds that ingestion of gluten or casein might result in incomplete digestion, in turn causing large, undigested proteins to leak out of the gut and travel to the brain, where they could eventually interfere with neuro-receptors and cause autistic symptoms. Therefore, it was believed that in susceptible autistic patients, a gluten-free/casein-free diet might produce direct improvements in brain function. To date, research on the topic has been very contradictory and characterized by small, poorly-designed studies Some (but not all) research suggests that one feature of autism spectrum disorders is reduced enzymatic activity and increased permeability of the intestinal barrier, both of which can lead to potential gastrointestinal problems. Given these digestive disorders, one prevailing theory holds that ingestion of gluten or casein might result in incomplete digestion, in turn causing large, undigested proteins to leak out of the gut and travel to the brain, where they could eventually interfere with neuro-receptors and cause autistic symptoms. Therefore, it was believed that in susceptible autistic patients, a gluten-free/caseinfree diet might produce direct improvements in brain function. To date, research on the topic has been very contradictory and characterized by small, poorlydesigned studies. Recently, however, researchers conducted a systematic review of 14 research articles related to dietary changes in patients with autism. After reviewing the articles, they deduced a “limited and weak” connection between a diet low in gluten or casein and brain function in those with autism, suggesting a different factor may be to blame for any observed behavioral changes after dietary restrictions were imposed.
how will i deal w ith
When parents first learn of an autism diagnosis with their child, it is inevitably a life changing moment. It is impossible to prepare yourself for all of the tribulations that will be undoubtedly occur while parenting a child with autism. Story by Autism Speaks
t's not easy to hear the news that your child has autism, and realize that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges. How do you come to terms with the fact that your child has autism? How do you cope once you get over the initial shock? We aim to help you by providing regular features on topics ranging from how autism affects your family to day-to-day survival strategies. You are never prepared for a diagnosis of autism. It is likely that you will experience a range of emotions. It is painful to love so much, to want something so much, and not quite get it. You want your child to get better so much you may feel some of the stages commonly associated with grieving. You may “revisit” these feelings from time to time in the future. Part of moving forward, is dealing with your own needs and emotions along the way. Stages Associated with Grieving Shock Immediately after the diagnosis you may feel stunned or confused. The reality of the diagnosis may be so overwhelming that you're not ready to accept it or you initially ignore it. You may also question the diagnosis or search for another doctor who will tell you something different. Sadness or Grief Many parents must mourn some of the hopes and dreams they held for their child before they can
move on. There will probably be many times when you feel extremely sad. Friends may refer to this as being “depressed,” which can sound frightening. There is, however, a difference between sadness and depression. Depression often stands in the way of moving forward. Allowing yourself to feel sadness can help you grow. You have every right to feel sad and to express it in ways that are comfortable. Crying can help release some of the tension that builds up when you try to hold in sadness. A good cry can get you over one hurdle and help you face the next. Anger With time, your sadness may give way to anger. Although anger is a natural part of the process, you may find that it's directed at those closest to you – your child, your spouse, your friend or at the world in general. You may also feel resentment toward parents of typical children. Your anger may come out in different ways – snapping at people, overreacting at small things, even screaming and yelling. Anger is normal. It is a healthy and expected reaction to feelings of loss and stress that come with this diagnosis. Expressing your anger releases tension. It's an attempt to tell the people around you that you hurt, that you are outraged that this diagnosis has happened to your child. Denial You may go through periods of refusing to believe what is happening to your child. You don't consciously choose this reaction; like anger, it just happens. During this time, you may not be able to hear the facts as they related to your child's diagnosis. Denial is a way of coping. It may be what gets you through a particularly difficult period. You must, however, be aware of that you may be experiencing denial so that it doesn't cause you to lose focus on your child's treatment. Acceptance Ultimately, you may feel a sense of acceptance. It's helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents and siblings may each process the diagnosis in different ways.
Physical, Speech, and Occupational therapy all play an important role in the development of your child. Applying these therapies as part of your daily routine only increases the benefits. Story by Autism Speaks
dentifying with a child with autism can be challenging, but you don’t need to talk in order to communicate and bond. You communicate by the way you look at your child, the way you touch him or her, and by the tone of your voice and your body language. Your child is also communicating with you, even if he or she never speaks. You just need to learn the language. Look for nonverbal cues. If you are observant and aware, you can learn to pick up on the nonverbal cues that children with autism use to communicate. Pay attention to the kinds of sounds they make, their facial expressions, and the gestures they use when they’re tired, hungry, or want something. Figure out the need behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no differ-
ent for children with autism. When children with autism act out, it’s often because you’re not picking up on their nonverbal cues. Throwing a tantrum is their way communicating their frustration and getting your attention. Make time for fun. A child coping with autism is still a kid. For both children with autism and their parents, there needs to be more to life than therapy. Schedule playtime when your child is most alert and awake. Figure out ways to have fun together by thinking about the things that make your child smile, laugh, and come out of their shell. Don’t obsess over whether or not these activities are therapeutic or educational. The important thing is to enjoy your child’s company! Pay attention to your child’s sensory sensitivities. Many children with autism are hypersensitive to light, sound, touch, taste, and smell. Other children with autism are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your kid’s “bad” or disruptive behaviors and what elicits a positive response. What does your autistic child find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems and preventing situations that cause difficulties. With so many different autism treatments available, and it can be tough to figure out which approach is right for your child. Making things more complicated, you may hear different or even conflicting recommendations from parents and doctors. When putting together an autism treatment plan for your child, keep in mind that there is no single treatment that will work for everyone. Each person on the autism spectrum is unique, with different strengths and weaknesses. Finally, keep in mind that no matter what autism treatment plan is chosen, your involvement is vital to success. You can help your child get the most out of treatment by working handin-hand with the autism treatment team and following through with the therapy at home. By adding therapy at home, you greatly enhance the benefits of formal therapy.
Ball play with an autistic toddler is an excellent way to supplement formal therapy. 22 ParentingAutism.com
for children with autism Speech Therapy
(flash cards, singing, reading)
(imaginary play, puzzles, drawing, blocks)
(sports, playground, cycling, running)
Using picture cards, books, and music at home reinforces the goals set forth by your speech therapist.
Drawing and manipulative play works on further developing your child's fine motor skills and provides a creative outlet.
Sports and other physical activities are an excellent way to continue improving balance, gross motor skills, and muscle toning.
By Anne Dachel
American 8 year olds are diagnosed with autism
in the prevalence of childhood autism
1 in 70 boys 1 in 315 girls
4 1/2 years old the average age children are first diagnosed with autism
Why hasn't Autism Spectrum Disorder been declared an epidemic or a crisis yet? 192,863 114,841
Over the past decade, the Centers for Disease Control have conducted extensive studies and released startling data on the rapid increase of autism in the United States. We can see that in 2009 the Centers for Disease Control and Prevention called obesity an epidemic. Sept 20, 2010, U.S. Transportation Secretary said "driving while distracted by activities such as talking on a mobile phone or eating [is] an epidemic." The American Academy of Pediatrics has never called autism a crisis or an epidemic, but according to the AAP asthma is at epidemic levels. In addition, the AAP says underage drinking is epidemic. And they believe that retinopathy of prematurityinduced blindness in infants weighing 750 to 999 g at birth is an epidemic. The CDC thinks smoking is an epidemic. The American Academy of Pediatrics calls over-crowded emergency rooms a crisis. The Center for Disease Control warns about the crisis of prescription drug abuse. We have to wonder why no health care official ever talks about autism in these terms. I've been following this for years and I can say emphatically that they haven't. It's as if a memo was sent to everyone in any position of importance in health care: never refer to autism as a crisis or an epidemic, no matter how bad the numbers get. And it's worked. No one ever has. Julie Gerberding, past head of the CDC – now employed as the head of the vaccine division at Merck, referred to autism as a "serious public health problem." Thomas Insel, head of the National Institute of Mental Health, speaking at NIH this past spring
about autism said: "We have responded to this as if it's a crisis. We see this as an enormous public health challenge. If you look at those numbers, the increase and recognize how many of those kids will become adults, we...also need to be thinking about how we prepare the nation for a million people who may need significant amounts of services as they are no longer cared for by their parents or as their parents are no longer around." Health officials are very careful in choosing the words to use when talking about autism. They've lulled us into some passive state where, no matter how bad the numbers, no matter how many disabled children we're left to deal with – no one is worried. It's somehow now normal and acceptable to have your pediatrician suddenly announce to you that your child too is unfortunately autistic. On September 27, Health and Human Services Secretary Kathleen Sebelius was featured in a Washington Post story, Sebelius jumps into Nevada Senate race, blasts Angle autism comments. Sebelius gave us a stunning example of an official who seems to care about autism when it’s politically advantageous to do so. She was quick to criticize Sharron Angle for her insulting comments about autism coverage, but many of us in the autism community question the manner in which Sebelius has addressed autism as HHS Secretary. Back in April, to
100,000 U.S. Autism Cases Ages 3-22. Data provided provided by ideadata.org and cdc.gov/nchs.
recognize Autism Awareness Month, Sebelius could only manage to refer to autism as "an urgent public health challenge." In March, Kathleen Sebelius instructed the media to censor coverage of the heated controversy over vaccines and autism. Last October, when the new rate of one in 110 children was announced, showing a fifty percent increase in autism between children born in 1994 and those born in 1996, Sebelius still wasn't sure if there's been any real increase at all, or just more better diagnosing of a disorder that's always been around. Sebelius has hardly been an advocate for the hundreds of thousands of children with autism. The real insult to parents and kids has been endless years of health officials pretending that autism is some genetic disorder kids are born with. The federal government has been content to trivialize the impact of autism and to ridicule thousands of parents who claim that their children were normally developing until they received certain routine vaccinations. I predict that autism will never be a crisis to this government. Officials will never hold autism press conferences calling for drastic action. But... in the end autism will be a national emergency. The clock is ticking. When one percent of young adults also have autism, when they're lined up at social services across the U.S., they will impact this nation like a 9-11 or a Pearl Harbor. It's when autism becomes a financial catastrophe like the Wall Street Crash that we'll all finally wake up. I imagine that the CDC and the AAP will continue to be confused about autism. They'll still be debating the level of true increase and they'll have no idea of which environmental triggers are at fault. Our country will face this disaster alone as officials still know nothing.
November 2010 ParentingAutism.com 24
on the road
Autism Speaks 400 NASCAR Race Dover, Delaware May 16, 2010
Coby Fields 4 years old Coby and his dad spent a beautiful Sunday afternoon enjoying the sights and sounds of NASCAR. Coby loves the Pixar movie Cars and was looking forward to this trip for some time. "The race kept his attention the entire time and the nosie of the race didn't phase him at all," said his dad. His favorite moment of the race was watching his #18 "M&M" car go on to take the checkered flag.
Submit Your Child's Road Trip Each month Parenting Autism showcases a story about a road trip taken by a child with autism spectrum disorder. If you would like to see your story in a future issue, go to parentingautism.com and to submit it.
Jonathan Fields email@example.com