AUTISM ADVOCATE SUMMER 2013 - VOL. 63 NO. 2 | WWW.AUTISM-SOCIETY.ORG
Supports for Better Living
Board of Directors July 2012 - July 2013 Officers: James Ball, Ed.D., BCBA-D, Chair Ron E. Simmons, Vice Chair Sergio Mariaca, Treasurer Lars Perner, Ph.D., Secretary, PSA Chair Scott Badesch, President/CEO Board Members: Donna Andrus Jon Basinger Andrew Baumann Michael J. Brown, Esq. Denise Sawan Caruso Kevin Custer George Daly Linda Walder Fiddle, Esq. Anne Holmes, M.S., CCC, BCBA, PPA Chair Joseph Joyce Terry Murphy Honorary Board Members: Temple Grandin, Ph.D. Ruth Christ Sullivan, Ph.D. Publisher: Scott Badesch, President/CEO Senior Director of Content: Tonia Ferguson Staff: Margarita Benavides, Autism Source Specialist Mary Beth Collins, Director of Programs John Dabrowski, Chief Financial Officer Yuliana Diaz, Autism Source Specialist Selena HernĂĄndez, Manager of Support Services Rose Jochum, Autism Source Manager Nichelle Kolen, Receptionist/Administrative Assistant JosĂŠ Matos, Autism Source Assistant Catherine Medovich, Autism Source Specialist Anli Montilla, Financial Specialist Anne Nebeker, Autism Source Specialist Lindsey Nebeker, Development Specialist Jennifer Repella, Vice President of Programs Brendan Ryan, Administrative Assistant Sandra Smith, Chapter Specialist
2
AUTISM ADVOCATE | SUMMER 2013
The Autism Advocate is a publication of the Autism Society. Copyright 2013 by the Autism Society. All rights reserved. No part of this magazine may be reproduced in any form or by any electronic or mechanical means, including photocopying, recording or any information storage and retrieval system, without written permission from the publisher. The information, views and any recommendations or endorsements expressed by authors, advertisers and/or other contributors appearing in the Autism Advocate do not necessarily reflect the views, opinions, or recommendations or endorsements of the Autism Society. The publication of such information and the advertisements included within the Autism Advocate do not constitute an endorsement of such information or of any treatment, product, methodology and/or service advertised. To view the Autism Advocate online, please join the Autism Society at www.autism-society. org/membership. For more information, please visit www.autism-society.org or call toll-free: 1-800-3AUTISM. To contact the editor, please call (301) 657-0881 extension 9020, or email editor@autism-society.org If interested in advertising in the Autism Advocate, please call (301) 657-0881 extension 9012, or email lnebeker@autism-society.org All other inquiries should be addressed to: Autism Society 4340 East-West Highway, Suite 350 Bethesda, Maryland 20814 Toll-free: 1-800-3AUTISM | Fax: 301-657-0869 www.autism-society.org
FEATURES 8
AUTISM SOCIETY: IMPROVING LIVES Answering the Call for Over 40 Years – The Autism Society’s Contact Center, Autism SourceTM By Rose Jochum
11
SPORTS PROGRAMS FOR CHILDREN AND YOUTH WITH AUTISM Get Moving Now! By Veronica Smith and Stephanie Patterson
20
THE QUEST FOR HOME-BASED SOLUTIONS Connectivity-Guided Neurofeedback Helps Train the Brain at Home By Ann L. Rigby
28
ASKING THE QUESTIONS THAT MATTER CQL | The Council on Quality and Leadership
30
EMPLOYMENT ON THE AUTISM SPECTRUM Life Skill Strategies for Employment Success By Zosia Zaks, M.S., M.Ed., CRC
35
MEETING THE COMPLEX NEEDS OF ADULTS LIVING WITH AUTISM THROUGH COLLABORATIVE PARTNERSHIPS By Linda Walder Fiddle and Nina Wall
41
SO, I HEARD YOU BOUGHT AN IPAD Now what? By Melanie Johnston
48
REAL LOOK AUTISM By Mary Beth Marsden
52
CHAPTER NEWS Autism Society of Greater Austin Chapter Activities
SUMMER 2013 | AUTISM ADVOCATE
3
SAVE THE DATE! INDIANAPOLIS | JULY 23-26, 2014
45th Annual Autism Society National Conference | Indiana Convention Center The Autism Society National Conference and Exhibition is the only event to consistently bring together professionals, individuals on the autism spectrum, family members and advocates each year for in-depth discussions of what’s new in the field of autism and how to improve existing services and supports. This year the conference will be in Indianapolis where we will feature world-renowned keynote speakers and an exciting program to empower attendees and plenty of networking opportunities so affiliates can learn from other affiliates about what’s working in the field and how each affiliate is impacting the lives of individuals on the autism spectrum and their families.
The Indiana Convention Center & Lucas Oil Stadium is located in the heart of downtown Indianapolis. In the blocks surrounding the Indiana Convention Center, you’ll find affordable food options with more than 200 restaurants, entertainment choices and great hotel accommodations. Plus, it is right next door to Victory Field, which Sports Illustrated called “the Best Minor League Ballpark in America.” We hope you will join us for an exciting conference, networking and plenty of entertainment that Indy has to offer. See you there!
We are delighted to have you read this edition of the Autism Advocate. The Autism Society is a national leader in addressing and being very responsive to the needs of all impacted by autism. Since 1965, our rich history has consisted of many accomplishments with a national support system of 107 local and state affiliates; we are continuing to maximize the quality of life for individuals living with autism in measurable ways and here are a few of our efforts: 1. Having the most comprehensive and effective national autism Contact Center where trained and certified professional staff are available to help support a person seven days a week. 2. Having a network of 107 local and state affiliates, all meeting the highest standards of accountability and responsiveness, leading their communities and states in addressing needs that exist today among the over 2,000,000 people living with autism. 3. Holding the nation’s longest and largest grassroots national autism conference where this past July individuals on the spectrum, parents, professionals , affiliate leaders and others gathered in Pittsburgh to advance their skills, learning, and friendship. 4. Advocating at the federal, state and local level for a caring and responsive approach by government to support the needs of individuals living with autism. 5. And, providing valued information, such as the Autism Advocate Magazine, the nation’s longest running autism magazine, so that the reader can be better informed on autism related issues and needs. We are proud of the work of the Autism Society and the 107 affiliates serving our nation. Remember, we are here to help those who seek to maximize the quality of life for all living with autism. Go to our website (www.autism-society.org), call us at 1-800-3-AUTISM (Monday thru Friday 9 a.m. to 9 p.m. and Saturday and Sunday 9 a.m. to 6 p.m. - Spanish support provided), become a friend on Facebook (Autism Society of America) or visit and become part of the wonderful work of your local or state Autism Society. Thanks and we look forward to supporting you in the future! Jim Ball Chairman
Scott Badesch President/CEO
SUMMER 2013 | AUTISM ADVOCATE
5
Panel of Professional Advisors
Action in Autism®
Creating Hope For People With Autism onE pErSon, onE fAMILy,
onE CoMMunITy AT A TIME.
Founded in 1975, Eden Autism Services is
a primary resource for autism information, education, training and support services. Our highly trained clinicians provide:
• Early Intervention & Therapy Services • Consultative Services
• Diagnostic & Evaluative Services
• Trainings & Webinars for parents and professionals • The Eden Assessment & Curriculum
• Eden’s Learning Management System (ELMS)
Ann Holmes, M.S., CCC, BCBA (Chairperson) James Ball, Ed.D., BCBA-D Margaret Bauman, M.D. Barbara Becker-Cottrill, Ed.D. Lois J. Blackwell Eric Courchesne, Ph.D. Margaret Creedon, Ph.D. Geraldine Dawson, Ph.D. Anne M. Donnellan, Ph.D. Glen Dunlap, Ph.D. V. Mark Durand, Ph.D. William L.E. Dussault, J.D. Stephen M. Edelson, Ph.D. Judith E. Favell, Ph.D. Peter Gerhardt, Ed.D. Temple Grandin, Ph.D. Doreen Granpeesheh, Ph.D., BCBA June Groden, Ph.D. Paul Millard Hardy, M.D. Robert L. Hendren, D.O. Martha Herbert, M.D., Ph.D. David L. Holmes, Ed.D. Susan Kabot, Ed.D., CCC-SLP Martin Kozloff, Ph.D. Rebecca Landa, Ph.D., CCC-SLP Gary LaVigna, Ph.D. Bennett L. Leventhal, M.D. Brenda Smith Myles, Ph.D. Cathy Pratt, Ph.D., BCBA Christine Reeves, Ph.D., BCBA-D Frank Robbins, Ph.D. Stephen Shore, Ed.D. Ruth Christ Sullivan, Ph.D. Luke Y. Tsai, M.D. Diane Twatchman-Cullen, Ph.D., CCC-SLP Jennifer Twatchman-Reilly, M.S., CCC-SLP Paul Wehman, Ph.D. Harry Wright, M.D., MBA Patricia Wright, Ph.D., MPH, BCBA
Emeritus Members Edward Carr, Ph.D., BCBA (1947-2009) O. Ivar Lovaas, Ph.D. (1927-2010) Gary Mesibov, Ph.D. Bernard Rimland, Ph.D. (1928-2006) Eric Schopler, Ph.D. (1927-2006)
Advisory Panel of People on the Spectrum of Autism
For more information:
T. (609) 987-0099 www.edenautism.org
Lars Perner, Ph.D. (Chairperson) Darrius Frazier Dena Gassner, LMSW David George Sharisa Joy Kochmeister Kerry Magro Sondra Williams Zosia Zaks, M.Ed.
AUTISM IS COMMUNITY
Every year nearly 50,000 families begin a lifelong journey with autism. Yours may be one of them. And while there is plenty to learn about autism, one thing is certain: families need a supportive community of experts, advocates and neighbors. Thanks to the Autism Society and its network of local affiliates, help may be right around the corner. It’s where people with autism, and the families who love them can find answers and join a caring, dedicated, understanding community that welcomes, nurtures and respects them.
If you or someone you love has autism, you’re not alone. Because Autism IS Community.
To read our inspiring “Autism Is...” stories and find an affiliate near you, visit www.autism-society.org TM
TM
FEATURE
Autism Society: Improving Lives Answering the Call for Over 40 years The Autism Society’s Contact Center, Autism Source TM
~ I have always had a hard time fitting in and making friends, I have been reading a lot about Asperger’s Syndrome; do I sound like I have that? ~ I am so overwhelmed. I know my daughter is being bullied but don’t know where to turn, no one seems to think it’s an issue. She just doesn’t understand social situations. What can I do? ~ My grandson was just diagnosed with autism; I am so worried that he will never have friends, or do well in school, or have a job, or get married?
8
AUTISM ADVOCATE | SUMMER 2013
Autism SourceTM is the Autism Society’s contact center, and we are here to answer your call. Autism SourceTM assists those who may not know where to begin or where to turn when faced with the challenges of autism. Looking for help can be daunting and often means locating dozens of websites and searching through a maze of agencies and services in the hopes of finding one that can provide the services or support you need. Autism SourceTM provides trained staff to help negotiate this maze and connect people to resources in their communities for immediate and future needs. The Autism Society has provided Information & Referral (I&R) services since its inception almost 45 years ago.
Autism SourceTM is here for you, Monday through Friday from 9:00 a.m. to 9:00 p.m. and Saturday and Sunday 9:00 a.m. to 5:00 p.m (Eastern Time). Reach us through our toll-free number (800) 3AUTISM (800-328-8476) and by emailing info@autism-society.org or through our website’s Contact Us form. The Autism Society’s I&R specialists help identify local resources to meet your needs and share information so that you are able to make informed choices. For those who live in areas that may not have services readily available, the Autism Society assists in identifying alternative resources. The grassroots nature of our organization was, and continues to be, an ideal way for those who know the service systems best to provide guidance to those in search of resources. The Autism Society with its network of affiliates and partners has collaborated to create www.AutismSource.org, a one-of-a-kind national online database of autism-related services and supports.
Collectively drawing on the vast amount of knowledge and insight shared by the incredible professionals who make up the Autism Society’s Panel of Professional Advisors (PPA), Panel of People on the Spectrum of Autism Advisors (PSA) and all those who have contributed website content, white papers, articles to our membership magazine, the Autism Advocate since we began in 1965, we have information to share like no other autism organization. Most importantly, Autism SourceTM provides its Information and Referral services while always following the Autism Society’s Options Policy. The Autism Society believes that each person with autism is a unique individual. Each family and individual with autism should have the right to learn about and then select, the options that they feel are most appropriate for them. To the maximum extent possible, we believe that the decisions should be made by the individual with autism in collaboration with family, guardians and caregivers.
We know the overwhelming sense of urgency felt to locate appropriate providers of services and supports. To help serve this immense need, the resource database was created by our Autism Source Contact Center in 2004 and now contains well over 25,000 individual listings. Listings include: Autism Society Local Affiliates, government agencies, physicians, medical and diagnostic centers, day schools, information and support groups, early intervention, community services for adults, service providers, legal and advocacy services, consultants, camps, research centers, and more.
SUMMER 2013 | AUTISM ADVOCATE
9
So, if you are an adult who thinks you may have not been diagnosed because of a lack of awareness during your time in school and who wants to find a psychologist who can evaluate for Autism Spectrum or to a find an adult support group so you can feel accepted and tap into the neuro-diversity movement, to learn about being a self-advocate or when to disclose your diagnosis, we can help. Or, if your child is being bullied and you want guidance on how to prevent it, such as seeing if bullying prevention could be added to her IEP, or you want to find a social skills group in your area to teach her some of the hidden curriculum of school life, we can help.
Autism SourceTM Making Connections, Providing Support, Improving Lives
Or, if you fear that your grandson may not have all the things you expected for him, we are here to show you the huge community of happy, successful adults with autism who fill our lives with their talent and teach us a new way to see the world! Oh, and we’ll get you a packet of information on the treatments that will help him be all he can be. For over forty years, the Autism Society and its grassroots network of affiliates have been answering the call, clarifying the myths of autism, raising awareness, educating and advocating for families and individuals affected by Autism Spectrum, and creating a caring, supportive community throughout the United States.
Autism Society delivers nationwide one-on-one I&R Monday-Friday from 9:00 a.m. to 9:00 p.m. and Saturday-Sunday from 9:00 a.m. to 5:00 p.m. (Eastern Time) through a toll-free number 1(800)3AUTISM and email info@autism-society.org. We also offer comprehensive content on our website www.autism-society.org and a free searchable online directory www.autismsource.org of services and supports available throughout the country. Let our trained I&R staff share information, help you identify resources and identify alternative options so you can make informed choices.
10
AUTISM ADVOCATE | SUMMER 2013
FEATURE
Sports Programs for Children and Youth with Autism: Get Moving Now! VERONICA SMITH AND STEPHANIE PATTERSON We all know exercise boosts brain functioning and benefits most of our physiological systems. We also know participation in sports activities allows children to become more “physically literate” and along the way learn about themselves and how the world works and develop confidence to take risks and experience new learning opportunities. Yet there is a worrisome trend that all children, and especially children with autism, engage in less physical activity than is recommended for a healthy life. What can be done about it? A lot. Despite the developmental barriers to including children on the autism spectrum in sports programs, several ingenious coaches have done just that!
We have been collecting stories from our community partners about their programs in skating, tennis, swimming, soccer, tae kwon do, horse riding and bicycling that have been adapted to meet the unique learning needs of children and youth with autism and other developmental disabilities. Our intention is to spread the word that children with autism can gain full access to sports programs that lay a foundation for habits and intrinsic enjoyment of lifelong physical activity. These programs are important for families to consider when they are planning for appropriate activities to support their son or daughter’s healthy development.
SUMMER 2013 | AUTISM ADVOCATE
11
Why is Participation in Sports Programs Important? All children, and especially children with autism, are less physically active than is recommended to develop optimally and to live long, healthy lives. While the benefits of physical activity are evident across all age groups, we see positive influences most acutely during childhood. Physical activity strengthens muscles and bones, improves cardiovascular fitness and motor skills, enhances social and attention skills, and influences a whole host of positive behaviors related to performing well in school. Importantly, there is evidence that physical activity is associated with better brain functioning. Without getting into a detailed physiological explanation, when we are physically active, certain neurochemicals associated with learning and brain growth are stimulated. Additionally, regular exercise increases blood flow to the cortex, which enhances oxygenation resulting in better cognitive functioning. Evidence of this can be seen directly in brain functions such as concentration, memory and perceptual skills – important factors that influence language, literacy and numeracy development. These benefits do not end in childhood. Across the lifespan, physical activity improves quality of life and well-being and is a great source of fun! So, what about children and youth with autism? Of course, physical activity is important for them too! It is important that parents do not let the behavioral challenges associated with autism prevent them from taking advantage of
12
AUTISM ADVOCATE | SUMMER 2013
these opportunities. As we all know, children on the spectrum have unique challenges in social communication and interaction and may have issues related to motor imitation, motor planning and sensory processing along with stereotyped behaviors that interfere with engagement in physical activities and organized sports programs. Despite these challenges, the importance of physical activity cannot be ignored. Without it, we see a host of negative consequences such as excess weight gain or obesity. For this reason, physical activity is not only important for positive development but also has the potential to slow or prevent the progress of chronic health conditions. Importantly, we need to realize that engaging in physical activity in childhood has long-term benefits. By fostering healthy activity habits early in life, we lay a foundation for community integration in adulthood. We know that by 5 to 7 years of age, children are ready to learn the fundamental movements and motor skills that enable them to participate in recreational and sporting activities. Childhood is an important time to practice motor skill activities. Practice is important because it improves skills and increases the likelihood of becoming independent in complex motor activities such as bike riding, swimming, skating and playing ball sports. Proficiency in these activities opens doors to a myriad of social worlds and environments. Children with autism cannot afford to miss out on these opportunities!
Which Sports Should We Try First? There are several common sporting activities children participate in around the world, but depending where you live, some are more popular than others. As a parent, it is important for you to consider a sport that is valued by your family and appealing to your child. Whatever sport you choose, make sure that you check out whether the program or coach is able to support your new athlete with autism. Difficulties reading social cues, understanding the rules of a game, anticipating the behavior of others, sharing or turn-taking, sensitivities to the environment, and engaging in conversation are all issues that need to be addressed. Included below are some of the types of programs that you might consider, along with examples of successful programs in Canada and the U.S. Biking This is an activity that most children (and many adults) engage in and is also a fairly low-cost sport the whole family can enjoy. The You Can Ride TWO! program of Edmonton, Alberta, was
started by a pediatric physiotherapist, Janine Halayko. It has steadily evolved over time with input from experts in the cycling community (i.e., a local bikers’ commuting club) and the lessons learned from the many riders who have graduated from the program. The You Can Ride TWO! program accepts all children who have found learning to ride a bicycle challenging. This means all kinds of children have participated, including children with autism. The program makes careful use of volunteers who run alongside the new riders when they are learning to balance. The volunteers provide assistance by either catching the bike before it tips or providing physical prompts to prevent as many falls as possible. Each session builds in a predictable sequence of components that are visually represented in a schedule that includes opening and closing group activities. These group activities provide an opportunity to celebrate the new bikers’ many accomplishments along the way. Generous amounts of encouragement are essential to get and keep new cyclists rolling!
Swimming
Horseback riding Learning to ride a horse involves practicing many skills related to physical literacy, especially balance and coordination. Cecelia Llambias grew up on a ranch in Argentina and enjoyed the pleasures of becoming a skilled equestrian. She runs a learn-to-horseback ride program for children with autism and has also studied the positive effects this physical activity can have on children’s motivation and communication. In addition to gaining riding skills, the children learn to care for the horses by grooming and feeding the animals before and after lessons. Skating One of the great things about most learn-toskate programs is that children are able to move through these programs at their own pace in both group and one-on-one settings. This individualization helps to accommodate a range of rates of skill development and learning. Although a challenging motor activity, a great perk to skating is learning about balance! An adapted learn to skate program can provide a safe and fun environment for new skaters to develop a solid foundation of skating skills. This can propel them into recreational skating, taking to the ice with peers and family both at school and in the community, or to take on the adventure of figure skating or hockey.
14
AUTISM ADVOCATE | SUMMER 2013
For four years, Laura Dumas has run SwimAbilities, a “learn to swim� program serving families of children and youth in Edmonton with special needs, including autism. Laura is an occupational therapist (OT) and Red Cross-certified water safety instructor. After years teaching swimming, she knew there were many children who needed more support to learn to swim and to understand the essential safety skills around water environments. Laura developed SwimAbilities to guide children to get used to the water and begin to practice skills in a safe, carefully paced environment. Her students have gone on to enjoy other swimming programs including diving and competitive swim clubs.
SENSORY STORY Sometimes children are so distracted by new sensations in sporting environments – swimming pools, skating rinks and even grassy fields – that they need help to remember to stay focused or figure out ways to self-calm. One interesting intervention is the Sensory Story. The idea with these stories is to help develop children’s insight into their sensory issues and remind them to follow the strategies that help them stay focused. Read the sensory story developed for a child who attends swimming lessons in an indoor pool.
Jason’s Swimming Lesson Story Children go to swimming lessons to learn to swim and be safe around the water. Sometimes in the pool, the children gather around the swimming instructor to learn about what they need to do to learn to swim. When the children are in the pool, the instructor might tell them something new, show them how to do something, or help them to do something. The instructor wants the children to be quiet and stay still in the pool. The teacher does not want children to move around and be loud. Sometimes being still and being quiet is hard to do. There are special things I can do to make it easier to be quiet and listen. I can get my swimming noodle and hang on to it while I am listening. Hugging the swimming noodle helps me to get calm. During group time, I can put my feet flat on the ground. I like to push my feet down and feel the pool floor. This helps me to stay quiet. If I have trouble sitting still, I can take a deep breath to help me listen and learn. When group time is over, I stretch my arms up high and take a deep breath. Now it is time to practice and I know what to do. Being quiet and still in my swimming lesson helps me learn!
Tennis
Martial Arts
Tennis can be played anywhere at any time. With just a racquet and a ball, you can enjoy tennis at many levels, from spontaneous play in the yard to recreational games on the community courts or more competitive matches in organized leagues. No matter what level you would like to play on, there is a way to be involved in tennis. ACEing Autism, an adapted tennis program offered at locations around the U.S., was designed specifically for children with autism – the coaches have adapted materials and make heavy use of volunteers to support the development of new tennis skills. ACEing Autism was created by the husband-and-wife team of Richard Spurling and Dr. Shafali Jeste and now runs out of California, Massachusetts, and New York.
There are many benefits to participating in martial arts, not only for the individual with autism but for the whole family. Martial arts (including tae kwon do, judo and karate) provide opportunities for physical activity as well as learning strategies for self-regulation and self-control through fun routines and activities. It is a great way to practice motor coordination, planning, and strengthening skills. Jon Rivero, an occupational therapist and tae kwon do Master, developed a tae kwon do program, the Young Master Club, for families in Edmonton. Children with autism and their siblings and parents are invited to participate. The program began in 2005 as a pilot project with five children with autism and has since grown to include more than 70 families.
16
AUTISM ADVOCATE | SUMMER 2013
Soccer Soccer is inexpensive to play and is available in most communities – big or small. In many countries, soccer can be played year round (whether indoors or outdoors) and is a game that you can learn to play at any age. Some children learn to play as young as four or five, and many soccer enthusiasts play the game their whole life (or as long as their knees hold out!). Size doesn’t matter either! Big and small players are seen even on the pro teams. Whatever their age, size or level of expertise, all players are working toward combining skill, speed and an understanding of the rules to get good at the game. We encountered several highly talented individuals who have created soccer programs that include children and teens with autism; two Canadian programs are mentioned here. The Canucks Autism Network (CAN) created a manualized I CAN Play Soccer program specifically for children with autism. This organization provides training for soccer coaches and has facilitated the creation of dozens of soccer teams in a number of regions.
practice about a month later, over 60 children and their families came out to join the program! Today, the program runs in the spring and fall, with sometimes up to 200 volunteers, parents, and children turning up at the group practices and games.
Environmental Supports Environmental supports are ways we can help provide information to students about the context in which they are learning. These supports are designed to visually depict what is going to happen, when it is going to happen, and which activities are expected. Schedules can be used to indicate the sequence of activities in a lesson or to break down steps within one activity. Visual Schedule to Prepare a Child for Soccer
Another group, Vancouver’s Blazin’ Soccer Dogs, was started in 2007 by a parent who was frustrated that her daughter was not included in a community soccer league. When her daughter was denied entry, Abbe Gates wrote to the local newspaper, not to complain but to see if there was anyone “out there” who would be interested in starting up a soccer program for kids who need extra support. The response from the public was overwhelming – coaches, donations and volunteers came out of the woodwork. Most importantly, when the newly named Blazin’ Soccer Dogs held their first
SUMMER 2013 | AUTISM ADVOCATE
17
What Can We Achieve? Imagine including all children in every aspect of society. Seeing the possibilities for children with autism in sports is a place to start. Looking ahead, we hope that participation in sports will address physical activity needs and also spill over to more inclusive communities where all children can get into the game!
ABOUT THE AUTHORS Veronica Smith In childhood, Veronica spent many hours participating in organized and not-so-organized sports. These early opportunities helped her develop physical skills that amused her throughout childhood and continue to contribute to her health, well-being, and research activities in the Faculty of Education at the University of Alberta in Canada.
Stephanie Patterson Stephanie has been active in sport throughout life, beginning with skating. Her experiences as an athlete brought her to professional coaching as a hobby while pursuing training and education in educational psychology focusing on intervention programming for children with autism. She is currently a doctoral student at UCLA.
BOOKS
Smith, V. & Patterson, S. (2012). Getting into the Game: Sports Programs of Kids with Autism. London, GB: Jessica Kingsley.
WEBSITES
Resources
You Can Ride TWO www.youcanridetwo.ca
In this book, we lay out a road map for coaches and parents to help get kids moving by providing examples of sports curricula, skill sequences, and adaptations specifically designed for children with autism. There are several resources that can be downloaded online: www.jkp.com/catalogue/book/9781849052498/resources
A learn to bike program designed specifically to assist children who need extra supports to learn to bike. SwimAbilities swimabilities.ca A swimming program designed to support children’s water safety and swimming skills prior to entering a Red Cross Swim Program. Young Master Club www.qicreative.com/services A tae kwon do club for families who have a child with autism. ACEing Autism www.aceingautism.com Tennis, anyone? An introductory tennis program designed specifically for children with autism. Canucks Autism Network (CAN) www.canucksautism.ca The Canucks Autism Network (CAN) is an organization in Vancouver, British Columbia, dedicated to creating opportunities for children with ASD to participate in high-quality community sports. It provides training for community recreation programmers who are interested learning more about autism.
SUMMER 2013 | AUTISM ADVOCATE
19
FEATURE
The Quest for Home-Based Solutions
Connectivity-Guided Neurofeedback Helps Train the Brain at Home ANN L. RIGBY
Home may be where the heart is, and it’s also now the place families are finding great success in helping their child train the brain to aid in speech/language development, social awareness, attending and much, much more.
But life isn’t always easy for Max, who attends a suburban therapeutic school and faces a variety of learning disabilities, an auditory processing disorder, and speech/language delays due to autism.
Helping Max At Home
“We first noticed he wasn’t speaking like other young children by his second birthday,” recalls his mom, Marie. “He struggled to make eye contact, had his own words and language, and was unable to communicate in a way others could understand.”
From martial arts lessons to basketball, swimming, riding his scooter and listening to music, 11-year-old Max Williams* is your typical fun-loving, on-the-go preteen.
20
AUTISM ADVOCATE | SUMMER 2013
The Williamses say their quest to find answers to the debilitating effects of autism was multipronged. For years, she and her husband, Joel, who works in construction, searched for ways to help Max develop social skills and communicate. Max was enrolled in early intervention and his parents sought the assistance of speech, occupational and developmental therapists to aid their son. In kindergarten, teachers worried about Max’ inability to sit still and questioned his ability to comprehend language. “For the last five or six years, we tried the biomedical route and found some success,” recalls Max’s mom, who says that in addition to seeking the advice of leading medical and educational specialists, she searched the Internet and attended autism conferences to learn all she could about an autism spectrum diagnosis and potential therapies and treatments. Making The Neuroconnection “That’s how I first learned about a newer type of brain training called Connectivity-Guided Neurofeedback being used to aid those with autism and other neuropsychological conditions to improve and rebuild the brain’s neuroconnections,” recalls Marie, who says she was curious to learn more about the promising treatment she discovered at one of the educational autism conferences. She soon discovered, in Naperville, Illinois, a brain mapping and neurofeedback facility offering an advanced form of neurofeedback called Connectivity-Guided Neurofeedback based on brain imaging research and a homebased therapy protocol.
“Neurofeedback training can be very effective with autism spectrum disorder – particularly Connectivity-Guided Neurofeedback, which trains the way the brain communicates with itself,” explains Ann L. Rigby, founder and director of The Neuroconnection, who uses Connectivity-Guided Neurofeedback to help Max and other clients form new connections in regions of the brain where they have not been formed previously due to the epigenetic nature of autism. According to Rigby, the state-of-the-art Connectivity-Guided Neurofeedback has proven especially beneficial for those with autism and a new home-based component means the structured therapy sessions are accessible to those like Max, who don’t live in close proximity to the center. Because of the brain’s lifelong neuroplasticity, the brain can change and form new connections at any age, says Rigby, who currently sees clients ranging in age from three to 77. Training takes an average of 60 sessions for individuals on the autism spectrum and the effects shown in studies over time indicate that improvements are lasting. The sophisticated Connectivity-Guided Neurofeedback training is particularly effective for clients with autism, she says, as it trains regions of the brain where neuropathways should have formed during early development but did not for better communication and timing.
SUMMER 2013 | AUTISM ADVOCATE
21
Brain Training At Home Following his recommendation of his doctor, Max and his family made the trip to Naperville for evaluation, brain mapping, individual protocol development, and to learn all they could about running training sessions before returning to Chicago. His parents learned in clinic how to use the neurofeedback instrument, loaded with Max’s protocols, to train Max at home. During each 30-minute home-based session, Max was connected by two sensors on his scalp and ears and monitored by trained clinicians at The Neuroconnection via Skype technology. Auditory and visual feedback was provided in the form of a movie of Max’s choosing. That same Skype technology also enables other clients from as far away as Russia and India to tap into the highly specialized technology available in suburban Chicago, Illinois. “When producing the correct brain waves, the brains seeks out sights and sounds and becomes conditioned to produce correct brain wave patterns more often,” explains Rigby, who says over time, the unconscious process makes changes in brain wave activity and begins producing optimal functioning, thus decreasing symptoms. After only 10 home training sessions, Max’ parents reported amazing changes. Their son began making eye contact, was calmer, had improved attention, and was beginning to participate in family conversation. An additional 10 sessions yielded more positive results.
22
AUTISM ADVOCATE | SUMMER 2013
“Even his teachers started noticing a change,” says Marie, who notes her son was engaging in conversation, and constantly asking “What does that mean?” when he failed to grasp the conversation. “He’s become very expressive. He’s more present. Even his eyes and his face are engaged as he speaks.” *Max Williams’ name has been changed to protect his privacy. His story and experiences are very real.
Indiana Family Finds Home-Based Success Home-based training also made sense for the Tichenor family of Fort Branch, Indiana. Their seven-year-old son, Logan, was diagnosed with autism at age three after losing his ability to communicate as a 15-month-old infant. “Unfortunately, the closest center providing neurofeedback therapy was 110 miles away in Louisville, nearly a 90-minute trip from home,” recalls his mom, Carrie. “With sessions recommended twice each week, it meant we’d be spending a lot of time on the road. They didn’t offer the more advanced ConnectivityGuided Neurofeedback proven especially beneficial for those with autism.
be enhanced, children are able to pay more attention and get more out of tutoring, become socially aware and engaged and often need to join a social skills group to catch up due to their new awareness and interest in peers.
After making the journey to Naperville for evaluation, brain mapping and hands-on training, Logan’s mom also began noticing changes her son made in both speech and social engagement. “Today Logan is asking questions, using sentences, making comments and conversation. He’s also participating successfully in group activities, something he wasn’t able to do previously.” Periodically throughout the year, Logan and his family make their way back to Naperville for brain remapping and protocol adjustments. What The Experts Say According to Rigby, Connectivity-Guided Neurofeedback makes the changes in the brain that allow other therapies to be absorbed faster. The home-based component means therapy is available and accessible to families across the country and around the world. “When you have the neuroconnections that allow you to now perform the tasks, improvements are seen more quickly,” states Ribgy, who says speech therapy can
Among other results are the ability to transition without disruption, increased focus, improvement in social skills and social pragmatics, increased calmness and decreased anxiety, improved verbal communication or expressive language, improved receptive language, fewer repetitive behaviors, and improved processing speed. “The new interest in others, improvement in eye contact and empathy can be an amazing thing to watch,” she says. “A child at the beginning of training, who had no interest in others, will suddenly come into the office engaging with others in the waiting room or carrying on reciprocal conversations with staff when they were not able to do this before.” Applauding Connectivity-Guided Neurofeedback Training Success through Connectivity-Guided Neurofeedback is being applauded by a number of families. Emmett Micklo Erin Micklo of Glen Ellyn, Illinois, mother of 11-year-old Emmett, says the gains following a year of Connectivity-Guided Neurofeedback training for individuals on the spectrum are amazing. “Emmett is seeking us out more, and we’ve noticed an increase in conversational give and take,” says Micklo, who also notes that during
SUMMER 2013 | AUTISM ADVOCATE
23
the course of treatment her son was able to reduce and eventually eliminate his need for anti-convulsant seizure medication. “While doctors don’t concur that the training was directly responsible for Emmett’s improvement, we couldn’t be happier with the outcome.” Ben Paulson Tracy Paulson, a Naperville, Illinois, mom of two, says she attributes much of the success her 15-year-old son, Ben, to Connectivity-Guided Neurofeedback. “Ben was first diagnosed with a developmental delay and started receiving occupational, physical and speech therapy by 18 months of age,” reports Paulson, who says by the time he was nine years old and in the third grade, her son’s self-calming rheumation led to a misdiagnosis of reflux. Medications were prescribed. “In the fifth grade, we stopped the medications and began working with Ann Rigby at The Neuroconnection,” she says. “After evaluation and brain mapping, we completed 40 sessions of Connectivity-Guided Neurofeedback before his sixth grade year. He transitioned seamlessly to the new school year and even his teachers noticed he was more focused, had developed a longer attention span and was not as frightful and anxious.” The Paulsons continued therapy focusing on the area of the brain known as the frontal lobe, completing 60 sessions. An additional 20 sessions focusing on the right side of the brain yielded even more improvements in focus, resulting in a less-stressful Individualized
24
AUTISM ADVOCATE | SUMMER 2013
Education Plan (IEP) meeting, less occupational therapy time and fewer structured breaks. Following a two-and-a-half-year break in sessions, Paulson says she was surprised to learn that upon retesting, Ben’s brain continued to show improvement. “We did another 20 sessions and his transition to high school was wonderful,” she states. “Ben’s social skills have really improved and he’s now part of a close-knit group of friends who enjoy geocaching [an outdoor recreation hobby involving the use of a GPS receiver or mobile unit to find hidden containers and treasures] during their free time. Next year he will no longer need occupational therapy, and he’s transitioned from enjoying Special Olympics activities to other activities like managing the high school football team. “Connectivity-Guided Neurofeedback has changed the entire family,” reports Paulson, who says Ben’s experience is a journey. “We’ve come a long way and aren’t quite finished yet.”
Zachary Stewart Marybeth Stewart, the Naperville, Illinois, mother of nine-year old Zachary, says what she learned about Connectivity-Guided Neurofeedback made sense. The registered nurse, who always believed her son had the ability to learn and communicate but that he was somehow stuck, says “he’d space out, lose focus and, while he was verbal, Zachary was far from being able to converse at a first-grade level like his peers.” Despite years of early intervention therapies, social skills group work, medications, intensive at-home verbal prompts and a variety of techniques including the use of weighted vests, brushing protocols, and trying a gluten- and casein-free diet, Stewart says she was worried.
“He’d make small gains, but we worried about the lack of substantive progress during the critical brain and IQ development period between the ages of seven and nine,” admits his mom, who says she felt the proverbial clock was ticking. After nearly a year of Connectivity-Guided Neurofeedback training, she says her son is on the verge of a major breakthrough and already showing huge gains in expressive language and emotional stability. “He’s asking questions about topics and conversations we had when I didn’t think he was even listening,” notes Zachary’s mom, who says the finite data and concrete results indicate her son is indeed moving in the right direction. “He’s showing a greater desire to be included in conversations and participating more.”
SUMMER 2013 | AUTISM ADVOCATE
25
How It Works Based on the latest research, ConnectivityGuided Neurofeedback focuses on brain waves produced by electrical signals as the brain’s neurons fire. “It’s a noninvasive, non-medication and painless intervention which enhances neuroregulation and can improve the ability of the brain to function optimally,” says Ann Rigby, founder and director of The Neuroconnection. Measured using an electroencephalogram (EEG) amplifier and computer to show when optimum functioning is present, Neurofeedback training sessions induce change by rewarding the brain with sounds and visual images from a movie or game when the correct brainwaves are produced. The Connectivity-Guided Neurofeedback process involves the use of specific brain mapping tools that provide three-dimensional statistical computations that show how the brain is communicating with itself. The specific tool that provides a quantitative metric for EEG and measures regions of the brain for connectivity is called NeuroRep, developed by Dr. William Hudspeth. “These tools take into account the geography and structure of the brain and an understanding of the pathways in the brain that allow information to flow back and forth,” explains Rigby, who says it is only with these tools that trained clinicians accurately know where and how to do the correct type of Neurofeedback training.
26
AUTISM ADVOCATE | SUMMER 2013
“Until recent years, the maps that we used only allowed us to look at the brain as if it were flat and did not account for the distance between the sites that we were evaluating,” she states. “State-of-the-art brain mapping today enables us to evaluate regions of the brain, looking at areas that are too loosely or too tightly connected, and aims to make changes to these abnormalities in functioning.” Research Basis For ConnectivityGuided Neurofeedback The research of Robert Coben, Ph.D., a neuropsychologist, is at the heart of Connectivity-Guided Neurofeedback. Dr. Coben reported results of a large-scale 2009 study of 85 children in an experimental group trained using Connectivity-Guided Neurofeedback, showing a 57 percent decrease in autistic symptoms. “Using Dr. Coben’s model, we have achieved outcomes similar to the 2009 study that he did,” says Ann Rigby of The Neuroconnection in Naperville, Illinois. “In addition to the significant symptom reduction seen with our clients, it’s not uncommon for our clients to be able to come off stimulant medication, antidepressants, and anti-anxiety meds following training. Best of all, the improvements seen with training are lasting. We have followed clients several years out after training and find that they continue to do well without recurrence of the symptoms that improved during Neurofeedback training,” she states.
For Additional Information Neurofeedback has been used for more than 20 years to address the symptoms of attention deficit, anxiety, chronic fatigue, substance abuse and mood disorders. It meets the American Academy of Child and Adolescent Psychiatry’s clinical guidelines for recommending evidencebased treatment. For information on neurofeedback and Connectivity Guided Neurofeedback, call The Neuroconnection at 630-858-5105 or visit www.theneuroconnection.com.
ABOUT THE AUTHOR Ann L. Rigby is a licensed Clinical Social Worker with over 25 years in the mental health field, working with children, adults, families, and couples. She has specialized training in the areas of Attention Deficit Disorders, Autism, Anxiety and Mood disorders. Ms. Rigby added QEEG and Neurofeedback to her practice in 2001 and currently provides an advanced, researched form of Neurofeedback called Connectivity Guided Neurofeedback at her clinic, The Neuroconnection. Ms. Rigby earned her MSW at Washington University in St. Louis. Prior to entering private practice in 1997, she worked in hospitals and outpatient settings and held supervisory
positions within them. Ms. Rigby is a field placement instructor for graduate students from Benedictine University. She is board certified in EEG biofeedback (BCN) through the Biofeedback Certification Institute of America. She earned a two-year postgraduate certification in Family Therapy and is certified by the Academy of Certified Social Workers (ACSW). Ms. Rigby is the president of the board of the Autism Society of Illinois. She is a member of the International Society for Neurofeedback and Research (ISNR), the Association of Applied Psychophysiology and Biofeedback (AAPB), The Biofeedback Certification Institute of America (BCIA), and the National Association of Social Workers (NASW).
SUMMER 2013 | AUTISM ADVOCATE
27
FEATURE
Asking The Questions That Matter The Personal Outcome Measures® have been a hallmark of The Council on Quality and Leadership’s (CQL’s) work for the last 20 years, and are a powerful interview tool for assessing each individual’s quality of life. The tool uses 21 “quality of life indicators”, to determine what is important to each person, and whether supports are in place to help them achieve their personal outcomes. What is especially unique about this approach is - instead of looking at how well the services are being delivered, it looks at whether those supports are having the desired results or outcomes that matter to the person.
28
AUTISM ADVOCATE | SUMMER 2013
It’s a shift in thinking – from a focus on the services, to a focus on results for the individual. CQL’s Personal Outcome Measures® are about listening, asking questions, and using the information to support people to have the quality of life they want - in the way THEY define it. Becky Hansen, CQL’s Vice-President for Accreditation, shares a couple of her own personal experiences using the Personal Outcomes Measures®. Here, she reminds us how important it is to put our own assumptions aside, listen carefully, and ask the small questions – for these often lead to big discoveries.
Personal Outcome #17 - People choose personal goals. During one Personal Outcome Measures® interview, I had the opportunity to talk with a gentleman that I had known and worked with for several years. When the questions regarding personal goals came up during the interview, he said what I anticipated that he would … his goal was to buy a new clock. This was his standard answer for this question each year during his planning meeting. He loved clocks and had developed quite a collection over the years. During this interview process I assured him that he would be able to purchase a new clock (as he did routinely) and then asked him if there was anything else that he wanted to learn, do or achieve. He was very quiet for a moment and then placed his arm against mine. He looked directly into my eyes for the first time during our conversation and said clearly and confidently, “I want to spend a day with people who look like me … with my people … just one day.” I looked at our arms as they touched each other and I noticed the contrast between my very fair skin and his dark brown skin. What he was asking for was for an opportunity to reconnect with his culture and to visit his family and childhood home on the Rosebud Indian Reservation. If not for this interview, it is unlikely that his team would have discovered that this was something he wanted. If not for the question being asked, it is unlikely that he would have shared this information. This was the day that time became more to him than the seconds and minutes that ticked by on the clocks that he loved. It became something that he was empowered to make the most of.
Personal Outcome #21 - People are respected. Another time, I was teaching a colleague how to conduct a Personal Outcome Measures® interview and recruited a young woman named Gwen to be our volunteer. I knew Gwen well and greeted her by name each day when I saw her in the hallways at work. Gwen enjoyed the interview process and answered all of the questions with a positive, upbeat inflection in her voice. My colleague took the lead on asking questions as I observed and jumped in only as needed. The last question that my colleague asked during the interview was “What name do you preferred to be called?” This is a question I might have skipped if conducting the interview myself. Her name was Gwen and everyone knew that. I caught my breath as I heard her say, “I have
a beautiful name. My name is Gwendolyn, but nobody calls me that here. When I’m at this place, I’m just Gwen.” Gwendolyn reminded me how easy it is to assume that we know what a person wants and the power of simply asking.
To learn more about CQL and the Personal Outcome Measures® go to http://www.c-q-l.org/pomindex.aspx
SUMMER 2013 | AUTISM ADVOCATE
29
FEATURE
Employment on the Autism Spectrum: Life Skill Strategies for Employment Success Zosia Zaks, M.S., M.Ed., CRC
Employment involves more than just earning money to survive. Employment is also about contributing to society. Employment is how a person senses his or her dignity. What are the best ways to support adults on the autism spectrum who want to work? Self-Regulation: A Cornerstone Skill Self-regulation is a cornerstone skill that is often overlooked. An individual who overreacts at work is in danger of being fired. Clients of any age can use a 5-Point Scale to modulate the “amount” of an emotion and match themselves to socially appropriate responses – directly increasing adaptive behavior. Scales can be tailored to the individual’s cognitive level with words, pictures, colors or symbols.
30
AUTISM ADVOCATE | SUMMER 2013
Anger at Work The sample scale uses colors and text, but it could use images and numbers. Scales can include specific instructions such as “Reece will call his job coach.” Does your client have difficulty handling criticism? Struggle when supplies are low? Have a meltdown if the vending machine is out of corn chips? Put it on the scale! Clients can also use scales to communicate without relying on nonverbal communication signals such as facial expressions. Your client may be terrified, yet may not “look” scared or “act” frightened. If the individual can point to a Level 5 on a Scared Scale, you can adjust your approach accordingly with better results for both of you.
A 5-Point Scale The boss says I did the boxes I need a break! wrong, and maybe I’m not right for Reece will go to the room by the vending the job. machines and call his job coach on his cell phone. I have 30 minutes to FedEx 80 packages and I can’t find any envelopes.
I’m extremely angry! I can’t stay calm!
Someone rearranged the boxes after I spent all morning alphabetizing them.
I’m feeling very angry. I need a moment to calm down.
The boss said no drinking soda at my desk.
I’m feeling angry, but I can handle this.
I dropped a box of staples.
I’m upset, but OK.
Communication Strategies Elron carries an index card with a red stripe on one side and a green stripe on the other. Elron shows his boss the red stripe if he does not understand the boss’s instructions. She switches to visual instructions. Conversely, if Elron is ready to proceed, he shows his green stripe. Before this system was implemented, Elron would rip packing slips when frustrated and had been deemed “unemployable,” but now he is a valued employee. Systems like Elron’s are easy to implement. Successful communication at work also involves the context of the situation. Unspoken and unwritten rules of social communication are referred to as the Hidden Curriculum. Social narratives – in formats that can range from a cartoon to a chart or even a small book – are
a great tool for introducing social nuances and reinforcing positive skills that can impact the work environment. Use stick figures and leave out distracting details. Tailor narratives to the client’s literacy level and developmental understanding. Sensory Planning Adults with autism can be bothered by noises, smells and lights that don’t impact others. Someone can even have sensory issues with the texture of the carpet, the clashing colors of interior decor, the motion of a wheeled chair, or the banging of a roof fan. Jessie proudly completed a 16-week food service training course. Upon graduating, she got a job at a restaurant in the mall. Jessie walked out minutes into her first shift, stating
SUMMER 2013 | AUTISM ADVOCATE
31
that the restaurant noises and smells were excruciating. She was deemed unsuited for a career in food service as a result. But perhaps Jessie could have worked in a quiet tea shop or “prepped” a restaurant before opening time. If her sensory issues had been considered, Jessie could have planned around her challenges. Clients should be provided with sensory system education. Occupational therapists can assess and address sensory issues, too. Some strategies such as a perfume-free workplace qualify as reasonable accommodations. With proper planning, sensory issues do not need to be a barrier to work success. Workplace Culture Fitting into workplace culture is also important. Sam simply refused to dress up. Shirts with buttons made him feel like he was suffocating, and ties made him feel like he was choking. He also insisted on wearing shorts even in the winter, saying pants “cut” the skin of his legs. His first vocational counselor required him to dress up for interviews at retail stores. Sam would take off the business slacks as the two of them drove to interviews. Conflicts ensued. He started working with a new counselor, who took a radical approach based on the fact that Sam loved large animals. She found him a volunteer position grooming and feeding horses and cleaning stalls at an adapted riding program for disabled children. Sam was so good with the animals, and the children, that he was offered a job after two weeks. No one cared about his shorts. Matching a client to the right workplace culture can make a world of difference.
32
AUTISM ADVOCATE | SUMMER 2013
Accentuating Strengths Jerome had a habit of wandering, which was a liability on job sites. One week, while Jerome was sorting clothes at a store with his crew, security found him wandering around the parking lot. Another time, when the crew was cleaning up a local park, staff reached Jerome just as he was getting into the creek. Then the crew was assigned to restock shampoo packets in hotel rooms. Jerome wandered off. The hotel owner saw Jerome wandering around the lobby and yelled excitedly, “This is the guy I need!” The owner had been unable to find someone to work the night shift, collecting room service trays and then delivering newspapers. Jerome thought a job wandering the halls was perfect. When we look at what people can do, we can find a spot in the community where that skill, talent or behavior is valued. If you have a square peg, look for a square hole. Human Factors If nothing seems to be helping a particular client, maybe “human factors” are getting in the way. A senior in high school, Josh expressed a desire to work using pictures. He signed up for a job trials opportunity in the spring. The first day the van came to his house to pick him up, he refused to get on. Josh’s parents were bewildered. He refused to get on the van the second day too.
In desperation, his brother offered him a $50 iTunes card if he would just get on the van the third morning. He did, and threw up. He had no way to tell anyone that van rides made him ill! When someone’s behavior is puzzling, check for any problematic aspects in the following areas: • • • • •
Transportation Personal care, such as dressing or eating Sensory issues Environmental conditions The level of physical activity or the pace of work • The degree of socializing required by the job • Anxieties around certain tasks • *Executive functioning before, during and after work.
Adjusting morning routines, shortening commutes, allowing flexible start times, and setting aside time to decompress from responsibilities can often resolve many challenges. Task-training and career exposure are important, but life skills are crucial to employment success. Adults use these skills at work every day. Strong life skills and strengths-based planning will help your client meet his or her employment goals.
*Executive functions is an umbrella term for cognitive processes that regulate, control and manage other cognitive processes, such as planning, problem solving, verbal reasoning and others.
ABOUT THE AUTHOR Zosia Zaks, M.S., M.Ed., works as a Certified Rehabilitation Counselor (CRC). He writes and speaks about disability issues, and teaches courses on autism at Towson University. He served on the Maryland Commission on Autism from 2009–2012, is currently a member of the Maryland State Rehabilitation Council, and continues to serve on the boards or advisory councils of several local and national autism organizations including the Autism Society’s PSA Advisory Council. As a professional, a selfadvocate and the parent of two children on the autism spectrum, Mr. Zaks infuses his work with multiple perspectives, always seeking ways to foster inclusion.
SUMMER 2013 | AUTISM ADVOCATE
33
BLENDING BEHAVIORAL EXPERTISE AND EDUCATION Find an NHS School in your community: ALTOONA APOLLO CARLISLE CHAMBERSBURG EAST FREEDOM ELLSWORTH GREENSBURG HERMINIE LATROBE PHILADELPHIA READING SCRANTON SOMERSET STATE COLLEGE YORK
SCHOOLS
Serving students with an Autism Spectrum Disorder or Emotional Support need. Contact us at: 724.600.0120 | schools.nhsonline.org
Pe n n Stat e | On l i n e With the 100% online autism program from World Campus, you can: gain knowledge in autism spectrum disorders
study at times and locations convenient to you; there are no required visits to campus learn from the same nationally recognized faculty who teach on campus Get started today by visiting www.worldcampus.psu.edu/AA
13-0090/13-wc-0057 djm/jms/bjm
earn continuing education credits in your profession
FEATURE
Meeting the Complex Needs of Adults Living with Autism Through Collaborative Partnerships LINDA WALDER FIDDLE AND NINA WALL
How do we as a society attempt to meet the needs of the diverse and ever-growing population of adults living with autism? The challenge seems massive. The goal is to create opportunities that foster the personal growth of adults while always valuing their unique attributes and talents. No one path works alone, and no one organization or service provider can accomplish the creation and implementation of support systems and services while opening doors to community life. It is vital that all those who serve individuals on the spectrum, along with governmental agencies and legislators at the state and national levels, work together to develop paths for meaningful work, residential accommodations and community engagement that foster contribution and participation for all people living with autism. For more than a decade, The Daniel Jordan Fiddle Foundation has successfully built partnerships that have opened doors for people
living with autism throughout the United States. The model of collaboration has produced innovative public service materials such as the GET Going guide (Guiding Everyday Travel), a pocket-sized “travel trouble-shooting” guide created by The Daniel Jordan Fiddle Foundation, Easter Seals Project ACTION and Feeley Consulting, LLC. Another innovative public service project was the creation of a pamphlet – “Autism, Epilepsy & Seizures: How to Recognize the Signs and Basic First Aid When You Do” – which includes a fold-open chart to hang on the wall for easy access. The project was a joint effort spearheaded by The Daniel Jordan Fiddle Foundation and Epilepsy Foundation of New Jersey, along with Dr. Ruth Nass of the Child Study Center at New York University’s Langone Medical Center. These public service materials are available free of charge on The Daniel Jordan Fiddle Foundation website (www.djfiddlefoundation.org).
SUMMER 2013 | AUTISM ADVOCATE
35
Collaborative partnerships are the key to addressing the needs of the adult autism community in terms of program development. The Daniel Jordan Fiddle Foundation Signature Programs are blueprints that address all aspects of adult life. A recent collaboration with UJAFederation of New York has launched an Ignition Grant Program through which over 100 agencies are invited annually to submit innovative program ideas that serve their adults on the spectrum. This past year a unique dating program that included support groups and the creation of dating profiles by the participants helped individuals develop interpersonal skills and relationships. Another collaboration, with Paws Four Autism, is teaching adults life skills as they learn to care for their dogs – and, of course, social skills are enhanced too. And an upcoming Daniel Jordan Fiddle Foundation Signature Program collaboration with The Miracle Project will create the opportunity for individuals to record original music in a recording studio. A video will be shot of the creative process and the artists on the spectrum will be commissioned to create the CD jacket cover. All the performers will be compensated for their time as working performers. These and other ongoing partnerships have yielded more than a hundred programs that serve adults on the spectrum. The Daniel Jordan Fiddle Foundation has acted as the catalyst of programs to exhibit the power of the social-entrepreneurial spirit of collaboration.
36
AUTISM ADVOCATE | SUMMER 2013
This mentality has also led to productive partnerships with the public sector. The collaboration of autism organizations created an entity called Advancing Futures for Adults with Autism (AFAA), which includes a wide range of partners who serve the autism community. One of the key goals of AFAA is to develop public policy that addresses the lifespan needs of adults on the spectrum. Through congressional briefings and active discourse with legislators, initiatives have helped to enlighten legislators about the needs of the growing population of adults living with autism. Currently, legislation called the ABLE Act, which will allow families to save monies tax-free, is in the pipeline, and other future legislation will hopefully address expanding insurance coverage for lifespan needs and create more accessibility for the development of residential settings. Collaborative partnerships are vital on both the state and national levels. Pennsylvania has been a leading example of the success public/private partnerships can yield. The state has an innovative approach to collaboration between the public and private sectors that we believe could serve as a national model. In response to a recommendation from the 2003 Pennsylvania Autism Task Force Report, the Bureau of Autism Services, Pennsylvania Department of Public Welfare (BAS, DPW) established the Autism Services, Education, Resources, and Training Collaborative (ASERT). Formed with representation from the eastern, central and western regions of the state, ASERT is a partnership among universities, hospitals
and autism service providers. ASERT is tasked with improving access to quality services and information, providing support to individuals and caregivers, training professionals in best practices and facilitating the connection between individuals, families, professionals and providers. Funded by the Bureau of Autism Services, ASERT extends access to resources by tapping into expertise from around the state. One of its main objectives is to improve access to quality services and training in underserved and rural areas. This is a critical need, as according to the United States Census Bureau, 48 of Pennsylvania’s 67 counties are considered to be rural, and families and individuals living with autism often find that living in a rural region can compound their sense of isolation. In order to further understand the needs of all Pennsylvania populations, ASERT conducted a statewide needs assessment to identify the regional needs of Pennsylvania’s autism community. This is the largest study of its kind in the nation. The results of this comprehensive study provide data that are informing changes in policy and practice, and are helping to guide the distribution of resources to result in more effective and efficient program planning at the state, regional, county and local level. ASERT currently has a portfolio of projects in progress, each designed with benchmarks and deliverables which will extend ASERT’s impact to a wide variety of stakeholder communities and continue to expand that impact over time. The following are ASERT’s three-pronged approaches to respond to the needs identified in the study across Pennsylvania.
Statewide Resource Center & Website ASERT provides streamlined access to information for the estimated 30,000 Pennsylvanians living with autism. The three components of the ASERT Resource Center are a statewide toll-free number for live assistance, 1-877-231-4244; a website, www.paautism.org; and outreach specialists available for community participation. The website offers information about local, regional and statewide events, professional training opportunities, community resources, services, current research and other information relevant to the autism community. Education and Training ASERT is committed to continued efforts to improve the lives of individuals with autism by developing training in a variety of areas. The sustainable and fiscally responsible models of excellence that ASERT is developing include an employment model for adults with autism in support of the DPW’s “Employment First” philosophy. ASERT also developed and released an online Employer Training program as well as a report entitled Employment for Individuals with Autism Spectrum Disorders in Pennsylvania. Other education and training projects include: developing post-secondary education capacity in colleges across the state; release of psychopharmacology guidelines; first responder and EMT training implementation; behavior specialist licensure training to help ensure highquality service delivery; and training webinars for a variety of professionals who serve individuals with autism.
SUMMER 2013 | AUTISM ADVOCATE
37
ABOUT THE AUTHORS Clinical Service Models Needs assessment data pointed clearly to a need for more robust clinical services in Pennsylvania. ASERT is developing new models through the evaluation of existing practices and the creation of new approaches where none exist. They are being implemented on a small scale in one or more of the ASERT regions, with a goal of expanding each project in the future. Future projects for ASERT include: expansion of adult diagnosis and assessment clinics; development of an Autism Life Care Model; life coaching to improve outcomes for adults with autism; adapting the Clubhouse Model, with community centers and services, for adults with autism; creating programs to enhance adult and adolescent social skills; and the use of telemedicine to connect families in rural regions to expertise and support. The collaboration between the Bureau of Autism Services and the partners within the ASERT Collaborative can serve as a guide for other states interested in making the best use of scarce resources. Our approach addresses identified needs in a fiscally responsible way, and serves as a model of excellent service delivery that could be duplicated across the country to improve the lives of individuals with autism and their families nationally. The paths of adults living with autism are diverse and often challenging, but through collaborative, person-centered efforts, needs can be turned into opportunities that lead to fulfilling lives.
38
AUTISM ADVOCATE | SUMMER 2013
Linda Walder Fiddle is the Founder and Executive Director of The Daniel Jordan Fiddle Foundation, the national organization focused for over a decade on adults living with Autism. Linda is a social entrepreneur who has innovated over a hundred programs and initiatives that have enriched the lives of adults living with autism. She is a prominent advocate on the state and national levels and works closely with legislators and citizens on the spectrum to develop public policy. Linda is a commissioner on New Jersey’s Commission on National and Community Service and is a member of the Autism Society Board of Directors and a Founding Partner of Advancing Futures for Adults with Autism. For more information on The Daniel Jordan Fiddle Foundation, visit www.djfiddlefoundation.org. Nina Wall, M.S., LSW, is the Director for the Bureau of Autism Services in the Pennsylvania Department of Public Welfare. Prior to this position, she served as co-chair of the Autism Task Force commissioned in July 2003. She was a founding member and first President of the Pennsylvania Action Coalition for Autism Services (PACAS), a statewide board of regional autism advocates. She has served as a Board member for Pennsylvania Protection and Advocacy, and served for seven years as the Information and Referral Director for the Autism Society of Greater Philadelphia. A graduate of Bryn Mawr College’s Graduate School of Social Work and Social Research, Ms. Wall worked as a family, child and adolescent therapist with a specific focus on clinical work with families of children and adolescents with ASD and other behavioral health challenges. Ms. Wall is the parent of a young adult with autism. ASERT is a statewide initiative funded by the Bureau of Autism Services, Pennsylvania Department of Public Welfare, with a mission to improve access to quality services and information, provide support to individuals and caregivers with autism, train professionals in best practices and facilitate the connection between individuals, families, professionals and providers. For more information about the Bureau of Autism Services and ASERT, visit www.PAautism.org.
The Academy AT N S U ’ S M A I L M A N S E G A L C E N T E R F O R H U M A N D E V E L O P M E N T
PRIVATE, INDIVIDUALIZED PROGRAM FOR YOUNG CHILDREN WITH AUTISM SPECTRUM DISORDER • Our educational philosophy is based on recognizing that each student is unique in ability and learning style. • Our STAR curriculum provides the scope and sequence of skills in areas such as receptive and expressive language, spontaneous language, social interaction concepts, independence, and academic skills. • Our teachers are professionals who are Florida-certified special educators or national board-certified behavior analysts. • Our multidisciplinary approach includes an autism specialist, speech-language pathologist, occupational therapist, and behavior analyst to design an individualized program for each student. • Our family education and support programs consist of specialized groups for parents, grandparents, and siblings.
We are proud to be McKay approved, and the Florida McKay Scholarship may be used toward tuition. 04-117C-13SAT
For more information, please contact Susan Kabot, Ed.D., CCC-SLP, at Kabot@nova.edu or (954) 262-7129.
This is what success looks like‌
This is what an adult living with autism looks like! Building successful futures for adults living with autism takes innovative program development, advocacy, funding – and a belief in their strengths, talents and promise. The Daniel Jordan Fiddle Foundation Signature Programs provide the blueprints that create opportunities for the diverse population of adults living with autism to build rewarding futures.
To learn more about The Daniel Jordan Fiddle Foundation visit: www.djfiddlefoundation.org To contact us, email: info@djfiddlefoundation.org Become a FAN of The Daniel Jordan Fiddle Foundation on:
FEATURE
So, I Heard You Bought an iPad Melanie H Johnston
I’ve got my apps and we are ready to start. Now what??? Preparing the user with an autism spectrum disorder (ASD) for the iPad and setting expectations are the first step to an independent user. Now it is time to create a plan.
Prepare the User The first step in creating a plan is to prepare the user. Optimally, the ASD user should be able to access apps independently, recognize that there are limits to what they can access and for how long, and transition from the iPad to other activities as easily as possible. With this in mind, it is important to set parameters for the ASD user before giving him/her free access to all that the iPad has to offer. The user will need to be taught how to use the iPad by engaging in activities and apps that reinforce touching, tapping, swiping and typing. It is important to note that the Multitasking Gestures feature on the iPad may need to be turned “off” before giving the iPad to the user. This feature is intended to make
navigation between apps and screens easier; however, it can be unintentionally accessed by the ASD user, causing frustration, confusion and anxiety (see Illustration 1). ILLUSTRATION 1
SUMMER 2013 | AUTISM ADVOCATE
41
ILLUSTRATION 2
Select apps that focus on teaching a single skill, like Peekaboo Barn for tapping, Rattle or FindMe for visual tracking and touching, and apps from Duck Duck Moose that teach combined elements of “poke,” touching and sliding. It is important to recognize that these skills may not be easy for all users and will need to be introduced and taught one at a time in a way that is reinforcing to the user. Taking the time to teach these skills may not seem necessary, but will help the user learn to navigate the device and will decrease frustration and behavioral meltdowns when the device does not respond as anticipated. Choose a time when the user is calm and there are as few distractions as possible. Introduce the app while sitting with the user. Provide a model demonstrating how to use the app, then add handover-hand assistance as needed to teach them exactly how to successfully interact with the app. If the user becomes frustrated, quickly intervene and activate the app so it remains as appealing and enticing as possible. Don’t force the user to continue trying the app if frustration increases or interest dissipates. It is best to end the training session as positively as possible. Some users will not be able to master independent access without using the Assistive Touch feature found in the Settings under Accessibility. Directions for these features can be found in the iPad User Guide that can be downloaded free into iBooks. The Assistive Touch feature allows you to adjust tracking speed, use two, three, four or five fingers to flick or drag, create your own gestures and more. Careful observation while orienting the user will help determine which if any Assistive Touch features will be needed (see Illustrations 2 and 3).
42
AUTISM ADVOCATE | SUMMER 2013
ILLUSTRATION 3
ILLUSTRATION 4
In the first article (“So, I Heard You Bought an iPad,” Autism Advocate Winter 2012-2013), it was mentioned that Guided Access allows a parent, teacher or administrator to limit the iOS device to one app by disabling the Home button. It can also be used to restrict touch input to certain parts of the screen. The feature requires a passcode to be set to prevent the user from turning off Guided Access. This will allow the adult to control how the app will be demonstrated and used, all without the ASD user exiting the app by pushing the Home button. There are additional restrictions to consider under the Restrictions tab of General Settings, which allow turn “on” or “off” for internet and email access, in-app purchases, App Store access, deleting apps, explicit language and more. Restricting settings can provide safer access with less direct supervision. It is best to set up the Restrictions and Guided Access features on the iPad before showing apps to the user. iPad users can be very “tech-savvy,” so restrictions must be set up privately and away from the user with all passcodes guarded and possibly changed regularly (Illustration 4). Augmentative Communication Individuals who are using the iPad as a dedicated Augmentative Communication (AAC) device should first choose an app using the Feature Match process, outlined in the second part of this series (“So, I Heard You Bought an iPad,” Autism Advocate Spring 2013), with the assistance of a speech-language pathologist who specializes in AAC and assistive technology. Once the best app has been determined, the user must be systematically taught to access communication using a format that is broken
into small steps and introduced without errors to prevent mistakes while providing high levels of reinforcement. The structure for successfully teaching communication when the app is activated by the user must motivate the user to interact repeatedly to get the activity, object or person they desire. Initially, it is helpful if the iPad being used for communication is not also used for play, video watching, etc. in order to prevent frustration and behavior outbursts. The Guided Access feature becomes an essential part of the training process as it prevents the user from continually escaping and avoiding using the communication app. Once the user is successful in using the AAC app to obtain preferred items, he/she will begin to value the communication tool and the need for the Guided Access feature should begin to decrease.
SUMMER 2013 | AUTISM ADVOCATE
43
Apps and Their Use When feature matching is used to make app purchase decisions, it is a simple process to determine which apps will be used for education, communication and free play prior to introducing them to an ASD user. Before presenting an app for education and communication, determine how much time the user will be required to actually use it. For free play apps, determine how long the user will be allowed to use the iPad for recreation and leisure. It is not always easy to monitor the amount of free time a user spends on the iPad at one time, and often, the longer the ASD user is on the iPad uninterrupted, the harder it is to get them to transition off of the iOS device to another activity. Consider using a timer that provides an auditory alert for those supervising the user. There are several “alarm apps” available that offer
44
AUTISM ADVOCATE | SUMMER 2013
recurring or “nagging” alarms that interrupt repeatedly until turned off, or an alarm that prevents the user from continuing an app without entering a passcode. From the beginning, teaching the user to end an activity with the alarm will make monitoring easier and prevent future meltdowns. There are several app timers, including Kaboom, TimeLock, and iGameTimer, which also allow a customized parental control setting that not only interrupts the user but imposes a preset “rest” time preventing the user from accessing another app until the rest time expires or a passcode is used. Establish a relationship with the user and adults that includes reciprocal turn-taking on the iPad before increasing expectations for working. If the user understands that others will be using the iOS device then he/she will be less likely to engage in extreme behaviors to keep others away from the iPad during instruction or play.
Visual Schedules When introducing apps for educational or instructional purposes, a visual schedule can be helpful in establishing expectations for the user. A visual schedule can communicate which apps will be used, how many trials or turns must be completed for each app and which preferred or “fun” app may be accessed when finished. The user should be taught step-by-step to follow the schedule, demonstrating how to find the correct folder and app listed on the schedule, opening the app, completing the pre-determined set of activities or trials, marking/charting as each is completed and then moving to the next app.
When the preferred app is placed at the end of the schedule, the user quickly learns how much they must do to get free time with the preferred activity. Tell the user, “First work, then play.” If the user skips to the preferred app prior to completing the previously taught expectation, they should be directed back to the schedule and reminded that they must “first finish work” before going to the “play” app. When a schedule is required as part of the daily use of the iOS device, it is easy to determine which apps are being used independently and appropriately. Apps that keep data also provide a way to track daily progress. Save, email or print the data, which can be used to update goals and objectives and when deciding to introduce more difficult apps and concepts. A little bit of thought and preparation prior to jumping into the app abyss will make the iPad journey much easier. Remember to take time to orient the user, set expectations from the onset, stop before a meltdown and prepare for transitions. This formula may not prevent every problem but should significantly increase the chances for long-term successful use. Now let the games begin!
Visual Schedules can be helpful in establishing expectations for new users.
SUMMER 2013 | AUTISM ADVOCATE
45
ABOUT THE AUTHOR Melanie H. Johnston, MA, has over 30 years of experience not only as an SLP but also as an Autism/Behavior Specialist in public schools, private practice and collaborations with other agencies and service providers. She is the Executive Director of BRITE Success, LLC, providing services nation-wide to consumers with developmental disabilities and ASD, families and professionals developing programs and providing training, and teaching individuals of all ages using interventions that provide communication skills, behavioral skills and readiness skills that are essential for independence. In 1983 she co-founded The Bynum School (originally known as Developmental Disabilities Center) in Midland, Texas. In the 1980’s Melanie received the opportunity to work directly under Dr. O. Ivar Lovaas, who is considered to be one of the fathers of applied behavior analysis, also known as ABA. Over the last two years Melanie has been at the forefront of implementing i- technology for education, especially in the areas of communication, assistive-technology, language, transitional and learning needs. Melanie has been a sought-after speaker in this new area of technology, speaking at national conferences and other trainings across the country. Melanie was recognized for her significant achievements and many contributions to the field of developmental disabilities by receiving the 2013 Education Award given by the American Association on Intellectual and Developmental Disabilities. Currently she sits on the AutisMate Advisory Board and continues to advocate for services being provided to those with ASD and special needs who are now of transitional age and above.
Next issue: Now that the user is oriented to the device and understands expectations and limitations, apps and the iOS device can offer opportunities for independence and inclusion that were never before possible.
46
AUTISM ADVOCATE | SUMMER 2013
Village Glen School
Bridgeport School
Sunrise School
Founded in 1975, The Help Group serves children, adolescents and young adults with autism and other special needs and is the largest, most comprehensive nonprofit of its kind in the United States. Recognized as a leader in the field, The Help Group offers a wide range of innovative autism spectrum disorders programs. Its four specialized day schools serve 1000 students on a daily basis, ages 3 through 22.
Young Learners School
ASSESSMENT EARLY INTERVENTION THERAPY PROGRAMS RESIDENTIAL PROGRAMS SOCIAL SKILLS PROGRAMS LIFE SKILLS COACHING TRANSITIONAL PROGRAMS DAY CAMPS PARENT EDUCATION
877.943.5747 l www.thehelpgroup.org CULVER CITY l SHERMAN OAKS EAST l SHERMAN OAKS WEST l VALLEY GLEN l VAN NUYS NORTH | VAN NUYS SOUTH
FEATURE
Real Look Autism MARY BETH MARSDEN
Good evening, I’m Mary Beth Marsden. That’s how I began every newscast for 20 years when I was a local TV news anchor in Baltimore, MD. I’m now in radio news and say pretty much the same thing. But between TV and radio I had a little gap period in which I stayed home with my kids. When my husband was at work and the kids were at school, I thought a lot more about autism. Up until that point, I had spent years finding the right educational programs and therapies while emotionally dealing with the fact that our youngest and only girl was diagnosed with Autism Spectrum Disorder (ASD) at age three-and-a-half. While I made sure my daughter was getting help, I think I never fully accepted the diagnosis. Maybe I was afraid that if I acknowledged it by name it would be permanent.
48
AUTISM ADVOCATE | SUMMER 2013
During our family “beach time” I could be creative and think more globally about how I wanted to make an impact, not only on our lives but also on the lives of other families dealing with similar issues. So after talking it over with friends, I came up with an idea for a reality show. I called it On the Spec, for on the spectrum. I even thought I could “borrow” “Horton Hears a Who” as the mascot. Horton heard those little people on the speck when nobody else did. Then I thought it could work something like the Supernanny show, with an expert or several coming to a home and helping one child with autism become more successful at one thing, whether that was toilet training, getting a haircut or recognizing a social cue.
For months I pitched the idea to production houses and a few well-known cable networks until I finally got a nibble, from a channel you probably know well. The On the Spec concept, along with some episode ideas, made it to a producers’ meeting where they were looking at possibilities for new programming. It didn’t take long to get an email that read, “Thanks, but no thanks.” What? I didn’t get it. In my mind, autism was everywhere. The mainstream media couldn’t get enough. Autism stories were frequently in the news, and each year it seemed the CDC was raising the prevalence numbers. Why wouldn’t a show about autism be popular? A producer from one network called and gave me some standard line about how this wasn’t their focus and they were moving in another direction. I finally said, “Look, off the record, can you give me a little more than that?” He said, “Fine. Off the record, we find the whole subject matter too depressing.”
For a second I didn’t say anything except maybe a very low and soft “wow.” I then thanked him and told him very sincerely, “On the record, I just want you to know that the people I know touched by autism are some of warmest, most empathetic, funny, loving people I know, and they would never want you to look at them and feel depressed.” Finding a voice Then another friend or maybe two mentioned to me: “Why don’t you just do it yourself?” Now, with the help of an amazing photographer/editor, I produce my own videos. They are stories of children on the spectrum who are making progress with the help of certain therapies or strategies. I knew I wanted the videos to serve a purpose, to give teachers or parents even the spark of an idea to help a child. I also wanted the videos to look professional and be interesting to a wider community. And most of all, I wanted the videos to feel hopeful! Real Look Autism (RLA) videos are not seen by millions of people (yet), but tens of thousands. They are not appearing on cable, but on Real Look Autism.com, YouTube and The Autism Channel. The Autism Channel not only includes RLA videos but also features several series that star kids, men and women with ASD. It’s fantastic to see this amazing collaboration grow and to think that this huge spectrum of autism is being represented so creatively and thoughtfully in the media.
SUMMER 2013 | AUTISM ADVOCATE
49
I wasn’t always so optimistic about autism. But as time passed, something changed. I began embracing this huge and dynamic autism spectrum. I started owning it and I’ll tell you, it freed me. I feel empowered now when I talk with others about autism. I feel eager to share my story if it will help someone else and I am always open to another person’s point of view. This is an amazing community of people who have different approaches and circumstances. We have wide-ranging viewpoints about research and treatment. But I believe if we listen and respect each other, we are “one,” and as “one” we have a huge voice. The autism community needs this voice to speak for it on many issues. First of all, there’s not nearly enough awareness. Awareness means a certain base of knowledge, and many people don’t even have a basic concept of what it means to be on the spectrum. Awareness is a
50
AUTISM ADVOCATE | SUMMER 2013
necessity if we are to help create communities that will welcome and include our children. And if others see us as “depressing,” we need to fix that. More education will help by leading to greater understanding and, ultimately, acceptance. As parents, we all want the same basic things for our children: to raise independent, productive, happy people. Are we getting enough support? No. But hopefully, if we keep an open heart and are willing to talk about autism and work for change, we will create a less judgmental and more available world for our kids. My family has embraced autism and we love it!
Mary Beth recently edited and contributed to Chicken Soup for the Soul: Raising Kids on
the Spectrum. This book is filled with essays and poems, mostly from parents who are raising or have raised children with autism. It covers “everything from the serious side and the challenges, to the lighter side and the positives, of having a special child on the autism spectrum.”
ABOUT THE AUTHOR Mary Beth Marsden is a local Emmy Award winning broadcast journalist who graduated from the University of Maryland with a Bachelor of Arts in Communications. She started her career at WJLA-TV in Washington, D.C. as a television news producer and, after a couple of stops at TV stations on the east coast, moved back to Maryland. Mary Beth spent 21 years as a reporter and the evening news anchor at WMAR-TV, in Baltimore. Today, she is the host of an afternoon news program on WBALRadio and is often interviewed or asked to speak on topics involving television, radio, social media, education and autism. Mary Beth and her husband Mark have two boys and a girl who, at the age of three and-a-half, was diagnosed with an autism spectrum disorder. Several years after her daughter’s diagnosis, Mary Beth wanted to do something to help others facing some of the same challenges. In 2011, she started producing videos that offer “solutions” for families affected by autism. Mary Beth believes acceptance follows awareness and understanding, which are the keys to making this world a more welcoming place for people on the spectrum. Her enlightening videos can be found on her website Real Look Autism, on the Real Look Autism YouTube channel, as part of Disney Family’s video library and on The Autism Channel. You can contact Mary Beth at reallookautism@gmail.com or on twitter @marybmarsden or on Facebook at Real Look Autism. Please visit reallookautism.com.
growing up on the spectrum
SUMMER 2013 | AUTISM ADVOCATE
51
FEATURE
Autism Society of Greater Austin Chapter Activities In Central Texas, the Autism Society of Greater Austin strives to achieve its goal of helping all those affected by autism by supporting families and professionals through monthly meetings, workshops, online vehicles and printed material, organizing special events to raise awareness and collaborating with many local community partners. The Autism Society of Greater Austin holds monthly support meetings to offer families a chance to meet one another in an informal
52
AUTISM ADVOCATE | SUMMER 2013
setting. We now sponsor a new support group in San Antonio. We also sponsor the monthly Autism Treatment Forum, which discusses the dietary, nutritional and biomedical treatment of autism. During the month, our families enjoy play dates for children on the spectrum of all ages, AMC Theatres’ Sensory Friendly Films, and Friends and Family Happy Hour just for adults. We offer several trainings, workshops and seminars that cover financial and insurance planning, legislation, education and safety.
One of our biggest events to note is our 6th Annual Austin Autism Bike Ride. This past April, for Autism Awareness Month, we were able to raise over $30,000 that will stay local in Central Texas to help all those impacted by autism. Some of our other special events during the year include Capitol Day to bring together people with disabilities and those who support them, Round Rock baseball outings, hockey games partnered with the Texas Stars Foundation, CommVault and Microsoft, our big Candlelight Ranch Picnic, and summer fun pool parties. Many of our achievements could not be possible without the help of our community partners and supporters. One of the most successful recent community collaborations was through Amplify Austin, a 24-hour online giving campaign in which Austin community members could donate to the local non-profit of their choice. Over $5,000 was donated to the Autism Society of Greater Austin. The Austin Elks lodge has been another important community collaborator. They received a $10,000 grant from the Elks National Foundation to sponsor fun activities for children with disabilities. The Elks have already sent over forty of our families to Morgan’s Wonderland. Community benefit concerts and events have become crucial for our efforts. It’s not uncommon to receive donated proceeds from metal rock concerts, local bars and restaurants, and even a Zumbathon!
A place where the needs of children with Autism are understood. Completely. The Autism Program at The Children’s Institute of Pittsburgh is family-centered and child-focused. We offer a comprehensive network of integrated services, treatments and therapies designed for those on the autism spectrum, from birth through age 21. As one of our Centers of Excellence, our approach gives patients and their families an extraordinary level of understanding, experience and advocacy. We are always innovating — creating and setting new benchmarks. Medical & Therapy Services • Developmental Pediatrics • Physical Therapy • Occupational Therapy • Speech/Language Therapy • Functional Feeding • Psychology Child & Family Services • Intensive Family Support Services • Aid in locating and securing appropriate services • Autism spectrum training for foster and adoptive families
Educational Services • Autism-specific classrooms with two-to-one student to teacher ratio • Social and psychological support • Transitional planning and support • Partnerships with local schools and community resources Research • Independent research • Collaborative university research
To learn more about The Center for Autism, a Children’s Institute Center of Excellence, please contact us at 412.420.2400 or visit www.amazingkids.org.
..................................... facebook.com/TheChildrensInstituteofPittsburgh Follow us on Twitter @AmazingKidsPGH
Nova Southeastern University proudly announces
Access Plus a college support program for students with autism spectrum disorder
Nova Southeastern University will provide services for students that will be more extensive than the current academic support and accommodations provided through the university’s Office of Student Disability Services. The program uses a positive behavior support approach and provides Academic Support
Psychoeducational Support Groups
A plan will be developed with individual accommodations to meet the academic needs of each student.
A weekly psychoeducational group session will be offered. The session will focus on information exchange, skill building, and self-reflection on the college experience.
Residential Support Residential advisers receive training in autism spectrum disorder and are trained to recognize the students’ social, behavioral, and organizational needs.
Volunteer and Other Career-Training Experiences
Campus Life/Social Support
Applicants must meet NSU’s admissions requirements as determined by the program of application.
Students in Access Plus will be encouraged to participate in extracurricular activities on campus, and, if necessary, they will receive support from Access Plus staff members.
The goal for each student will be to explore career opportunities during the last two years of the program.
For more information, visit us at nova.edu/accessplus or call (954) 262-7168.
04-094-13SAT