Autism Advocate Spring Edition 2013

AUTISM ADVOCATE

SPRING 2013 - VOL. 63 NO. 1 | WWW.AUTISM-SOCIETY.COM

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: Doreen Allen, Marketing Manager Mary Beth Collins, Director of Programs Denise Cruse, Events and Development Manager John Dabrowski, Chief Financial Officer Selena HernĂĄndez, Associate Director of Technology Rose Jochum, Autism Source Specialist Nichelle Kolen, Receptionist / Administrative Assistant Lawrence Korchnak, VP of Development/Marketing JosĂŠ Matos, Autism Source Assistant Catherine Medovich, Autism Source Specialist Anli Montilla, Financial Specialist Lindsey Nebeker, Development Specialist Jennifer Repella, Vice President of Programs Marita Robison, Comptroller Brendan Ryan, Administrative Assistant Sandra Smith, Chapter Specialist

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The Autism Advocate is a publication of the Autism Society. Copyright 2012 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 receive the Autism Advocate, please join the Autism Society. 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 tferguson@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

CAMP YOFI A Family Camp for Children with Autism

By Susan Kabot, Ed.D, CCC-SLP

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EQUAL ACCESS FOR ALL Cedar Fair Amusement Park Welcomes Individuals with Disabilities and their Families

By Mary Beth Collins

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ST. LOUIS ARC AND CQL The Council on Quality and Leadership Partner to Ensure Person-Centered Supports and Services for People with Autism Making Person-Centered Planning a Primary Goal

By The Council On Quality And Leadership

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HEALING FROM BULLYING A Personal Story

By Dr. Julie A. Donnelly

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BEREAVEMENT AND AUTISM A Universal Experience with Unique Challenges

By Brian A. Wong

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DSM-5: THE GOOD AND BAD

By Michelle Garcia Winner, MA, CCC-SLP

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SO, I HEARD YOU BOUGHT AN IPAD

By Melanie Johnston, MA

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YOUTUBE AND AUTISM Using YouTube in a Technology World

By Michael Rimmington, BSc MA

Take part in one of the largest autism conferences in the United States The 44th Annual Autism Society National Conference is happening in Pittsburgh, Pennsylvania July 10-13, 2013.

The Autism Society national conference brings together the expertise and experience of individuals with ASD, their family members, educators and other professionals.

Presentations address the full autism spectrum and encompass topics related to the entire lifespan for beginner, intermediate and advanced audiences.

Visit www.autism-society.org/conference for additional details.

DISCLAIMER: The Behavior Analyst Certification Board (“BACB�) does not sponsor, approve or endorse the Autism Society, the materials, information or sessions identified herein.

Message from the Board Chair We are delighted to have you read this edition of Autism Advocate.

The Autism Society is the nation’s largest and oldest grassroots organization. Our founders set the stage for systems change when they refused to follow the then recommended placement of their child living with autism in an institution. Instead they served as advocates, demanding services that result in a dignified and valued life and set the course for a promising future for their children. Autism Society staff and volunteers throughout the nation have provided support to millions of people to maximize their quality of life.

The Autism Advocate magazine is just one of many ways we provide valued information to our members, supporters and others seeking help from the Autism Society. It is the nation’s oldest and longest running national magazine focused on autism spectrum disorder and its articles throughout the years has helped millions. The philosophy behind the Autism Advocate and the Autism Society national system is simply this: with information comes power…power to make decisions that are in the best interest of the person living with autism.

In addition to the Autism Advocate, the Autism Society operates Autism SourceTM, the nation’s top autism specific contact center, which provides parents, individuals and professionals information on services, answers to questions and entrance to the Autism Society family. Using trained Information & Referral professionals, our staff is available Monday through Friday (9:00 a.m. to 9:00 p.m.) and Saturday and Sunday (9:00 a.m. to 5:00 p.m.) eastern time. If you have a question or need help finding a resource, call us at 1-800-328-8476.

More and more people who contact us tell us of their difficulty in navigating complex service delivery systems and many share with us their confusion in understanding government support programs. The Autism Society strives to be there to help make the journey a bit easier. The Autism Society family is committed to excellence and quality and assuring that every individual living with autism achieves the highest quality of life with the highest level of dignity.

Jim Ball, Ed.D., BCBA-D Chair, Autism Society Board of Directors

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Panel of Professional Advisors 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 Lars Perner, Ph.D. (Chairperson) Darrius Frazier Dena Gassner, LMSW David George Sharisa Joy Kochmeister Kerry Magro Sondra Williams Zosia Zaks, M.Ed.

Message from the CEO As Jim said in the proceeding message, the Autism Society works in many ways to be there for those living with an autism spectrum disorder and those who are seeking more information. Obviously, this magazine is one way we reach people and our Contact Center allows us to make one-on-one connections across the country. Our extensive nationwide network of affiliates has always been one of the most defining characteristics of our grassroots organization. Affiliates are comprised of a wide variety of parents, individuals on the spectrum, professionals and others who provide valuable personal local connections. These dedicated people, give so much of their time (often as volunteers) and more importantly open their hearts to others seeking support or working to improve the lives of all those living with autism.

Through various ways, the Autism Society is there for parents who learn that their son or daughter is diagnosed with autism spectrum disorder and is seeking reliable, balanced information. We are there for adults living with autism searching for information on support group locations or looking for employers who have set the standard in hiring individuals living with autism. And we are there for professionals, siblings, grandparents, students, friends and so many more who want to help and seek an understanding of autism.

Our website www.autism-society.org provides a wealth of information for those new to the autism spectrum or those approaching a new phase of life. Our staff and affiliate leaders are a wealth of knowledge and experience who can offer assistance and connect people to services and supports in their communities that can help. In addition to the other services provided, I want to take a moment to mention our National Conference and Exhibition that is being held this year in Pittsburgh, PA July 10-13. The Autism Society conference provides best practices and practical skills/knowledge on topics of interest to those affected by autism today.

Our annual conference is the only event to consistently bring together a mix of attendees for in-depth discussions of what’s new in the field of autism and how to improve existing services and supports. We are proud that the Autism Society conference brings together the expertise and experience of professionals, individuals on the autism spectrum, family members and advocates to share and learn from each other and leave more empowered to make informed decisions, advocate effectively and obtain needed services and supports.

We hope you are able to join us in Pittsburgh this July!

Scott Badesch President/CEO, Autism Society

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CAMP YOFI

Camp Ramah Darom, in partnership with Nova Southeastern University, provides an overnight camping experience for children with autism and their families. Based upon Ramah Darom’s five-day family camp model, adaptations have been made to insure that the children with autism, their siblings, and parents all enjoy a successful camp experience at Camp Yofi. Located in rural, north Georgia, this camp draws families from as far away as California and Canada.

Having successfully finished its fourth year, other camps around the country have expressed an interest in creating similar programs.

FEATURE

Camp Yofi: A Family Camp for Children with Autism Susan Kabot, Ed.D

An Idea is Born

The Family Camp Model

During Ramah Darom’s 2004 Family Camp, a single mother and her three children, all on the autism spectrum, participated in the session. At the same time, a member of the camp’s Board of Directors brought up the idea of providing some type of camp experience to children with autism. Initial funding was obtained from the Barry and Judy Silverman Foundation, a private foundation, and the Foundation for Jewish Camping. That board member also happened to serve on the board of Nova Southeastern University (NSU), an institution well respected for its programs and expertise in the field of autism. A partnership was born.

Ramah Darom has offered a five-day family camp session following the camp season for the past ten years. This camp currently enrolls forty families in the program. Several components are offered: morning camp activities for the children, morning learning and recreational activities for the adults, afternoon family time, an after-dinner evening family activity, and night-time adult social activities. The camp occurs over the weekend and Shabbat (the Jewish Sabbath) is observed with religious and slower-paced leisure activities.

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Adapting the Model for Campers with Autism It is important to understand the adaptations that need to be made to a family camp model to make it successful for families that have children with autism spectrum disorder.

Social-communicative-behavioral symptoms require one set of accommodations, while the diverse range of cognitive functioning found in children with autism requires another set of modifications.

to handle any children with autism who may present with significant or unexpected behavioral challenges. It is also important to have enough staff on hand who have expertise in autism, including both professionals in the field, as well as individuals having a family member with autism. At Camp Yofi, an experienced person leads each of the groups of four to five campers with autism. It is also important to have a variety of camp staff to lead the activity groups. The autism professionals are helpful in supporting the specialists in the adaptation of traditional camp activities to meet the learning style and functioning level of children with autism.

The Program

The Staff The need for close supervision, prompting to participate in activities, and the need to individualize activities requires a 1:1 staff to camper ratio. Each camper with autism is paired with a chaver (pal) who assists him throughout the week. At Camp Yofi, the family camp for families of children with autism provided by Ramah Darom, most of the campers are not previously known to the camp administration and a zero reject admissions model is in place so it is critical to have enough staff available

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The program consists of parallel schedules for the groups of children with autism, the groups of siblings, and the adult family members.

During mealtimes, children eat with their parents. Supervised playrooms are available during the second half of lunch and dinner so that parents have the opportunity to finish their meals in peace and socialize with other family members and camp staff.

The morning sessions consist of a rotation of six activities for the children with autism and the siblings. Activities include: arts and crafts, swimming, climbing the tower, nature, singing, dancing, cooking, story-telling, and yoga.

While children are engaged in these activities, parents have the opportunity to participate in recreational activities and learning/support sessions. At Yofi, some of these are of a religious nature and some are of an autism/ support nature.

After lunch, the chavers have some free time and families are able to utilize camp facilities as a family, including the pool, boating, and tower climbing. Other activities during this time may include family arts and crafts, scrapbooking, yoga, cooking and weaving. The chavers rejoin the family in the late afternoon. During that time, the chaver can be responsible for an activity with the child with autism, or the sibling, or join the whole family in an activity like hiking.

After dinner, there is an evening family activity for the whole camp. Examples of successful activities include campfires, camp Olympics, scavenger hunts, and sensory carnivals. The day ends with late-night social activities for the adults, with childcare provided by the camp staff who are stationed outside the sleeping facilities. This time allows the parents and grandparents to socialize without worrying about their children. Many of the parents describe this time as the only time they have had with their spouses to go “on a date� since they had a child with autism. During this time, adaptations to popular television shows like Iron Chef, Project Runway, and The Singing Bee take place. Other nighttime social activities include salsa dancing and game playing.

The Physical Facilities The physical facilities at Ramah Darom are exceptionally well-suited to this type of family camp, but many other camps would be able to use their facilities for this type of program.

Ramah Darom was designed to operate as a year-round retreat center and has several large buildings featuring motel-like accommodations with private bathrooms and interior corridors.

Families are assigned one or two rooms

depending upon how many members attend the camp. Families of children with autism are not assigned to rooms with second exits leading to outside patios in order to insure safety at all times, and especially with consideration to night-time childcare. Older, more experienced senior staff are assigned to these rooms while younger staff are assigned to bunk-type buildings.

Activity areas are scheduled for the groups of children with autism and siblings to provide for the most economical and efficient movement around the camp. For the youngest sibling group, activity specialists often go to a location where these campers stay. Campers with autism who are resistant to making the transition to another activity/location are often cajoled through rides on the golf carts, or use of behavioral reinforcement strategies.

Care is taken in the scheduling of the pool and lake activities to ensure the safety of the children. The children with autism are not scheduled to use the boats and water trampoline without parental supervision. These activities are available during family time.

As in traditional camping, it is important to have enough indoor spaces to accommodate activities on rainy days. It is critical to have substitute activities planned to take the place of outdoor ones in the event of rain. Children with autism need to have the least amount of commotion possible, so this must be well thought out in advance. It is also important to have alternate plans set up for family time, so that families have other options during inclement weather.

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Essential Elements

Staff Training

There are a number of components that make Camp Yofi a success and camps interested in replicating this model should pay particular attention to these elements.

In most cases, the camp will draw staff from its traditional summer camp. If the traditional camp already serves special needs children, then it is likely that the staff will have many of the skills necessary to support the children with autism.

However, if staff are drawn from a traditional camp without experience in caring for special needs children, it will be necessary to include a training component presented by an autism expert before the families arrive at camp. All of the camp staff need information about the characteristics of children with autism, focusing on the age span that is served by the camp. It is especially important to provide the staff with strategies known to be effective with many children with autism. Training should include the use of visual supports for transition and behavior, including activity schedules, visual first-then boards, and token boards. It should also include how to use positive reinforcement, covering token economies, praise, and tangible reinforcers including preferred activities, objects, and edibles. The emphasis has to be on “making it through the day” successfully, rather than implementing behavior change programs because of the short nature of the program. It is also important that staff be welltrained in the use of universal precautions.

While universal precautions are “universal” and not specifically targeted to children with autism, these children are more likely to need assistance toileting, have accidents on uneven terrain, and less likely to be independent in wiping their nose.

On-site Autism Expertise Camp Yofi is successful because of the strong and plentiful autism expertise through its partnership with Nova Southeastern University.

It would be helpful for any camp that is considering replicating a model like this to develop a relationship with either a university, a state or local autism agency, an autism support group, or a school system that may be able to share resources during the summer months. The lead autism person must have extensive experience in adapting programs for children with autism, behavioral techniques effective with children with autism, and the ability to collaborate with the traditional camp administration. This person must be able to make decisions quickly and confidently, as extensive problem solving and program adaptation will enable each participant to be successful in the program. This person should partner with the program director in leading evening problem solving sessions with the staff.

It is also important to have a number of other people with experience in autism to provide support during the camp program. Placing a lead person with each group of campers with autism provides immediate modeling and coaching for the rest of the 1:1 staff. They can also help the activity leader to adapt the activity if the group, or a member of the group, has difficulty participating.

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Another area that should be covered is crisis management. Staff should be taught protective

procedures such as blocking to prevent being hit, kicked, or bitten. They should be taught how to get a child to release a bite and remove hands from their hair. This training should emphasize that they should not attempt to physically move a child who is lying on the ground having a tantrum or who is resisting moving to the next activity. They should allow the experienced group leader to make a decision regarding the management of that situation. If a child has self-injurious behavior, the staff should be prepared to implement procedures to prevent injury to the child. The camp’s autism expert should make decisions, in collaboration with the parent, on how to handle such situations.

CAMP RAMAH DAROM Founded in 1994, Ramah Darom is a Jewish summer camp and year-round retreat center which serves tens of thousands of children, adults and families with Jewish learning experiences.

Ramah builds commitments to Jewish living, lifelong learning, and Jewish community.

High Interest Activities Which Can Be Accommodated for a Wide Variety of Ages and Abilities The success of the camp depends upon choosing activities that are motivating and meaningful to children with autism. This entails making adjustments to meet the developmental, as well as chronological, needs of the children. At Yofi, the camp’s zero reject model means that there are typically a wide range of cognitive abilities in the group. The activity leader must be able to adapt the activity to meet this need. It is also important to have a choice of activities during each period so that if children have a short attention span, they can move on to something else, or if a camper refuses to participate in a certain activity, there is another that she may choose. Another adaptation made at Camp Yofi is to ensure that there is an “activity backpack” at areas that require waiting. For instance, at the climbing tower, where children have to wait for their turn on the tower, staff have a backpack that includes a variety of objects that children with autism often like. Bubbles, balls, coloring books and crayons, fidget toys are some of the items provided.

An Emphasis on Safety Most camp properties have many characteristics that make increased attention to safety mandatory to insure the well-being of campers with autism. Children with autism often have no awareness of danger, so the camp staff must be hyper-vigilant and attentive to manage risk.

One of the challenges at Camp Yofi is that as the parents become more comfortable at camp,

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they are more likely to spend time conversing with other parents and are distracted from their responsibility to observe and attend to their children.

Before camp begins, it is important for the autism specialist to spend time analyzing the physical environment of the camp for potential hazards and developing strategies to reduce risk. Of course, the water areas including lakes and pools must be considered. For example, during campfire and breakfast on the beach, which are both held at the lake, staff stand in a line in front of the water in the form of a human fence to insure that no children end up in the water. Other areas to review include exits to buildings and rooms that will be used for activities. When large groups are in these areas, it is important to have staff assigned to man these exits to prevent children from wandering off unattended.

At Yofi, each group leader and activity area are equipped with first aid kits in fanny packs so that small injuries can be attended to on the spot. Gloves, first aid cream, a variety of bandaids, tissues, and hand sanitizer are included.

The Needs of the Siblings At Camp Yofi, siblings are made to feel special too. They participate in their own groups in the morning activities, and then share time with their families. The siblings often represent a wider age range than the children with autism so their program must include activities appropriate for children ranging in age from toddlers to teenagers. Particular attention must be paid to the program provided to the teens.

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Some are given the option of being a “junior counselor” if that meets their needs. Others are happy to participate with the group. This flexible grouping and programming depends upon the age distribution of the siblings during a particular camp session.

There is a special sibling lunch provided for those who are of an age for which this activity would be appropriate. Generally, elementary school age through teens are included in these activities. The lunches are generally provided for the group of siblings who share activities together, but occasionally adjustments are made for the lunch if it is felt that a particular child will do better with conversation at a different level. The lunch is led by someone with experience in sibling groups, either a mental health professional (if available) or the autism expert. During these lunches, the conversation revolves around their experiences with their sibling, questions they have, and, for the teenagers, concerns about their role in their siblings’ future. Sometimes, parents do not want their sibling child to participate in the lunch, either because they do not use the “autism” word at home or they are not comfortable with the sharing of experiences.

When there is a teenage sibling group, night activities are led by the sibling counselor of that group so that they feel special and can spend time watching videos, participating in craft projects, or playing games. A special evening snack is provided to them.

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Support for the Families At Camp Yofi, a spiritual, religious family experience is an important part of the program.

Many of the families express the isolation and rejection they experience from the religious organizations in their own communities.

Camp Yofi allows the families to participate in religious services as a family and activities without worrying about the reactions of others in the congregation. While the camp is not designed to provide the psychological support needed in a therapeutic model, it is natural that whenever families of children with autism get together, they become their own therapeutic support group and, therefore, it is helpful to have someone on staff that is sensitive to these issues and can monitor the group of families.

The NSU partnership provides post-doctoral psychology residents or graduate students in family therapy and psychology who have led parent education sessions on stress reduction, siblings, and “For Fathers Only.” The autism specialist has led sessions on “Ask the Autism

Expert.” During all of these sessions, issues arise that may need some expertise and support from the professionally trained staff.

Families have developed their own support networks following the Camp Yofi experience.

There is a list-serve that shares information about interesting programs, other resources, advocacy activities, and issues facing the families like guardianship and the development of special needs trusts. Families that live in the same general geographic area have bonded and maintained their relationships by visiting and sharing holiday and vacation time with each other.

Replication Camp Yofi provides a powerful experience for families of children with autism. Although this model is faith-based and designed to meet the needs of children with autism, family camps can be developed in secular models and to meet the needs of other special populations.

BOOKS

Resources For Staff Training And Program Development

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Coyne, P., & Fullerton, A. (2004).

Supporting individuals with autism spectrum disorder in recreation.

Champaign, IL: Sagamore Publishing.

Davies, A. (2004). Teaching asperger’s students social skills through acting: All their world’s a stage. Arlington, TX: Future Horizons, Inc.

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Hudson, J. (2005). Cabins, canoes and

campfires: Guidelines for establishing a summer camp for children with autism spectrum disorders. Shawnee Mission, KA: Autism Asperger Publishing Company.

Kohl, M.F. (1989). Mudworks: Creative clay, dough, and modeling experiences.

Beltsville, MD: Gryphon House.

ABOUT THE AUTHOR

Schneider, C.B. (2007). Acting antics.

Philadelphia: Jessica Kingsley Publishers.

Williams, B. (2003). Assistive devices, adaptive strategies, and recreational activities for students with disabilities: A practical guide for including students who need assistive devices and adaptive strategies into physical education and recreation activities. Champaign, IL: Sagamore Publishing.

Her commitment to the field of autism is fueled

by Michael, her adult son who has autism.

The Marcus Foundation in Atlanta, Georgia, has funded the development of a manual for replication of the camp model discussed in this article. It is available by request from the author at kabot@nova.edu Susan Kabot, EdD, CCC-SLP Nova Southeastern University, MSI 3301 College Avenue Fort Lauderdale, FL 33314

“Reprinted from Camping Magazine by permission of the American Camp Association; copyright 2012 by the American Camping Association, Inc.�

WEBSITES

Susan Kabot is the director of Clinical Services at the Mailman Segal Institute of Nova Southeastern University. She has graduate degrees in special education and speechlanguage pathology, and a doctoral degree in education. Susan is a Florida-licensed, speechlanguage pathologist and holds the Certificate of Clinical Competence from the American Speech/Language/Hearing Association. She has been an active participant in autism-related organizations and has served on the Board of Directors of the Broward County chapter of the Autism Society of America, The Broward Autism Foundation, and the constituency board of the Miami Center for Autism and Related Disorders. She currently serves as the special needs coordinator of Camp Yofi, a family camp for families of children with autism.

Autism Society of America: http://www.autism-society.org Autism Speaks: http://www.autismspeaks.org Organization for Autism Research: http://www.researchautism.org

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FEATURE

Providing Equal Access to Amusement Parks

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Equality is the goal

Equal Access

The Autism Society’s focus is to improve the quality of all stages and all aspects of life for those living with autism. Having fun and enjoying leisure time with family and friends is an important component to a life that is fulfilling, and should not be overlooked or deemed to be out of reach for individuals on the spectrum and their families. Equality is the goal the Autism Society strives to create where each person, regardless of abilities, is provided equal opportunity and accepted as part of the diverse fabric that makes up this country. Autism Society initiatives such as Safe and SoundTM, Sensory Friendly FilmsTM and the FOCUSTM Employment Program, involve corporate and public service organizations interested in increasing awareness and understanding of autism spectrum disorder and providing great access to opportunities where those living with autism can participate fully in their communities. Oftentimes, through education and simple modifications, these programs can “level the playing field” so that individuals with autism have equal access to community events, employment, or areas of interest.

Cedar Fair, one of America’s largest amusement park operators, approached the Autism Society with interest to continue their efforts to make their parks a welcoming place for people with autism and other disabilities. In addition, the company wanted to ensure that they were offering equal access to their attractions for all. Cedar Fair worked with the Autism Society to review their policies and accommodations to create equal opportunity and access to all guests with autism or mobility impairments.

Access Boarding Pass There are several reasons that amusement park attractions and rides may present challenges for those with autism, our goal was to create policies that provided equality, not special treatment. The partnership resulted in the 2013 Access Boarding Pass, and development of additional information and planning tips for families and care providers planning to go to an amusement park. This information can be found on the Company’s individual parks’ website under the “Plan a Visit” tab.

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The Access Boarding Pass provides guests alternate access to park attractions (with up to three companions) for those who are not able to wait in line. Carriers of the pass see staff working the lines of a ride and are given a designated ride time that is equal to the estimated wait time based on the length of the line at that time. While this policy does not provide immediate access to guests with autism, it excuses them from actually waiting in line (which can be problematic for some on the spectrum) therefore granting equal access to rides with wait times experienced by other guests of the park. While waiting for the ride time, guests can enjoy many other attractions of the park as outlined on the pass or visit sensory friendly locations available throughout the park.

At the designated time, pass holders proceed through the exit to take their seat on the ride.

Promptness is important, as the ride time is not

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a space saver; attendants cannot afford guests an advanced place in line if they arrive after their designated time.

Passes can be obtained by visiting the appropriate location at each park - specific locations are listed on individual park websites.

Safety has to be of paramount concern; therefore basic questions will be asked to establish ride manufacturer’s requirements of “neutral safety criteria.” These questions will be in relation to an individual’s ability to stand, grip their hands to hold on, can they stand, and do they have the ability to stay safe and follow instructions should a malfunction occur that halts a ride in process. Even though fun is the goal for an enjoyable day at the park, safety must remain a primary consideration when planning for a positive experience. Tips and additional information can be found on

park websites; it is provided to assist families in reviewing the factors involved when planning a day at an amusement park, and how to best prepare for a safe and fun adventure for the entire family.

The amusement park is a family vacation favorite. Children and parents alike look forward to the thrills offered by the park rides, shows, and variety of traveling characters and entertainment throughout the park. For a family dealing with autism, a day at an amusement park may seem to be impossible because of the frustration or inability to stand in the lines of the popular rides. The Autism Society applauds the development of the Access Boarding Pass by Cedar Fair. This simple modification removes the challenge of a line, and replaces it with a family-treasured memory. With the pass -- and some good sun block -- more families can enjoy a wonderful day at the amusement park.

Additionally, a number of Cedar Fair parks plan a Disability Day or Autism Day. Currently planned for the 2013 Season: California’s Great America, Santa Clara, CA – Disability Awareness Day (including Autism) Cedar Point, Sandusky, OH – Disability Day, in conjunction with the ARC of Ohio Dorney Park, Allentown, PA – Autism Walk prior to Park Opening Kings Dominion, Doswell, VA – Autism Day For more details, contact the park, or visit the park website.

Cedar Fair Amusement Parks: Cedar Point Sandusky, OH

Kings Dominion Doswell, VA

Valleyfair Shakopee, MN

Knott’s Berry Farm Buena Park, CA

Carowinds Charlotte, NC

Worlds of Fun Kansas City, MO

Kings Island Cincinnati, OH

California’s Great America Santa Clara, CA

Michigan’s Adventure Muskegon, MI

Canada’s Wonderland Vaughan, Ontario, Canada

Dorney Park Allentown, PA

Wildwater Kingdom Aurora, OH

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FEATURE

St. Louis Arc and CQL | The Council on Quality and Leadership Partner to Ensure Person-centered Supports and Services for People with Autism The St. Louis Arc is just one of many providers that make person-centered services and supports their primary goal. “We work hard to provide the kind of individualized services that can really help make a difference to an adult… to a child… to a family. Autism services are designed to maximize choice and to support people as they build quality lives within the St. Louis community,” says Kathy Meath, President and CEO.

The St. Louis Arc has been continuously accredited by The Council on Quality and Leadership (CQL) since 1983. When asked why they chose CQL, Meath said, “In looking at all of the accreditation processes available, we believe CQL most aligns with the St. Louis Arc’s mission and values. The St. Louis Arc shares CQL’s personcentered approach and how they incorporate the people we support into the accreditation process.”

Everything the St. Louis Arc does involves implementing CQL’s Personal Outcomes Measures® --from staff recruitment and training, to service provision, to strategic planning. It starts from day one when new Arc staff members attend their employee orientation, and it continues with ongoing trainings that help staff learn what they need to do to enable the people they support to successfully achieve their personal outcomes.

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The Personal Outcome Measures® have been a hallmark of CQL’s work for the last 20 years.

They look at whether the services and supports are having the desired results or outcomes that matter to the person. They have provided a powerful data set for the valid and reliable measurement of individual quality of life.

“When people are empowered to set their own goals and achieve them, they live better lives,” said Meath. The people we support know that what they say is valuable and is going to be listened to, which creates a better relationship between the service provider and the individual. For example, the parent of a St. Louis Arc participant sought our help because she wanted her son to have the ability to go to college, but there were limited options within the area. The St. Louis Arc listened and is helping to create a post-secondary program

at a local university for people with disabilities.

That is a gratifying feeling for all parties involved.”

Unique to the St. Louis Arc are the multiple and varied Family Trainings provided throughout the year. In fact, CQL has directed agencies from around the world to emulate St. Louis Arc programs because the strength of their services is focusing not just on the person with the disability, but on the needs of everyone in the family.

“Some examples of our Family Trainings are our new Touch Technology hands-on workshops that explain how to target specific apps on an iPad for better communication and improving fine motor skills. The Positive Behavior Supports workshop discusses how to understand challenging behaviors and offers easy

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intervention strategies for families. The Healthy Relationships classes provide education on how to build strong relationships and social skills, while also protecting oneself from sexual abuse.

All of these workshops are available to young people and adults with autism, along with their families and the staff that support them,” said Meath.

Since 2012, St. Louis Arc has offered peerfacilitated support groups for children, teens and adults with Aspergers syndrome.

What makes these groups dynamic is that the individuals involved play a major part in directing how the groups are shaped.

When asked for advice for parents or individuals who are choosing service providers, the St. Louis Arc staff provided the following suggestions.

• Always check if the service provider is an accredited organization. If so, how long have they been accredited? By whom are they accredited?

• Ask about what kind of Autism-specific training is provided to their staff.

• Identify your family’s philosophy toward early intervention and support. If you don’t have an organization that aligns with you in terms of values, it may take longer to find success.

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The St. Louis Arc’s role is to provide a programmatic component that is social skills based, while allowing families and participants to develop their own peer networks.

Meath adds, “Additionally, our Capable Kids and Families and our Outreach Therapy programs foster the family capacity building model. This involves our therapists and family support facilitator teaching skills to parents, teachers, and other community members so that they are better able to support children of all abilities in their daily routines. The greatest impact is when children can learn, grow and develop into healthy, contributing members of our community.”

• Find out how willing the organization is to make accommodations based on your specific family member’s individual needs.

Some organizations are very clear about the kinds of programs they offer, while others are able to make accommodations to handle situations that arise. The hallmark of a great service provider is one that evolves over time to meet the changing needs of the individuals they are supporting, along with their families.

For more information on the St. Louis Arc go to www.slarc.org.

For more information on CQL | The Council on Quality and Leadership go to www.c-q-l.org.

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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:

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FEATURE

Healing from Bullying for the individual with Autism Spectrum Disorder DR. JULIE A. DONNELLY

Over the past several years, you see more and more in the media about bullying. Many families experience the tragedy everyday and my family is no different. My son, Jean-Paul Bovee, experienced horrible bullying during his school years. He was in a rural school where they still thought “boys will be boys” and you have to learn to stand up for yourself to toughen you up for life. Jean-Paul had gone through elementary school alone and into his own interests and unaware that he was different and then in the 6th grade, the bullies woke him up. He tried to ignore them, but they continued to verbally and physically hurt him. The worst of the bullying ended when he was in high school, but the damage was done. His self-esteem

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was in shredded pieces. For a year, Jean-Paul talked of committing suicide and was ashamed that he did not have the courage to carry it out.

The bullying was over but the healing had only begun.

I have spent most of my adult life working with individuals with autism. Though my Ph.D. is in education, I have found myself counseling individuals on the spectrum because it was needed. From my son’s experiences, my own counseling work and the stories of my friends on the spectrum, I have developed the following tips on the best way to help heal from bullying.

1. Find A Counselor And Family Therapist

It is important that the individual on the spectrum understand that they don’t need counseling because there is something wrong with them. Life is difficult and it helps to have someone that you feel safe with to talk to.

The hard part is sometimes finding the right counselor. It helps if they understand autism.

Sometimes it takes time to find the right counselor, you will definitely know when you find the right counselor for you.

3. Disclose or Discuss the diagnosis

Jean-Paul felt he benefited from group counseling. He was truly amazed that others had problems and was proud of himself when he could be supportive and help others out.

4. Encourage good nutrition and sleep

A family therapist is trained in viewing all the members of the family as an interactive system.

They can improve the communication and help them work as a team to support all the members.

2. Identify your strengths and interests My son, Jean-Paul, knew his faults and his weaknesses. Letting his strengths shine took his focus off the people that made fun of him.

His phenomenal memory helped him to win History Bowl Championships and propelled him into student leadership. His teachers bent some rules to get him into the Honor Society. Also, Jean-Paul used his memory for rock music to become the vocalist in a band.

It can help to find clubs where there are others who share your interest, if not locally, then on the Internet. It can help to find a mentor in your field. A job can increase a person’s feeling of competence, even if it is volunteer work.

Many parents avoid telling their child that there is a name for their differences. In many cases, having age appropriate information about autism can relieve some anxiety. Jean-Paul always says, “I am not a broken person. I am a perfectly good person with autism.” I have found that discussing, “What is me and what is my autism?” is very important when I disclose that I have autism.

You cannot make a person eat right or sleep adequately. However, you can do everything possible to encourage it because it supports physical and mental health.

5. Enjoy Nature There is something about the outdoors that is healing. A young man I was working with was so depressed he had stopped eating and sleeping, so his mental state was getting worse. I took him down by the river and sometimes we talked and sometimes we just walked. After about an hour, he said, “I feel hungry.” By the time we finished eating, he could laugh and life was on the upswing.

6. Always try to problem solve Many times when you are having problems, you get stuck. Teaching more objective ways to look at your situation can help your attitude.

Teaching a problem solving strategy can be life changing. You can find some great strategies in cognitive behavior therapy.

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7. Identify a belief system

11. Enjoy physical activity

Jean-Paul says he would not have survived without his faith. Share your beliefs and encourage others to find their spiritual truth.

Some people have said that individuals with autism cannot understand religion, but I have found that often times that is not the case because individuals with autism are some of the deepest thinkers and do understand religion.

Activity is good for physical and mental health.

Jean-Paul loved sports and knew all the facts and statistics. He wanted to join cross-country, so decided not to compete but to make sure he finished the race. Also, he wanted to join the basketball team, so he became the team manager and one year he wore the Tiger suit and was the mascot.

8. Enjoy music, dance or theatre

Some individuals gain a lot of self-confidence by training in a martial art. Tai Chi and yoga are ways to gain strength and control. Many individuals may enjoy bike riding, wrestling, or soccer. These activities are also places to build relationships. It is important that people choose an activity that they like.

Music can be healing for all of us, but we each may choose a different kind. Many individuals on the spectrum are talented in singing or playing music. It is surprising but some individuals on the spectrum learn to act in life by acting on stage. Even those who do not perform may get some healing from performances.

9. Enjoy reading, drawing, and journaling There are good books on autism by individuals on the spectrum and there are books on people’s experiences with bullying. Sometimes it helps to know that you are not the only one.

Some individuals on the spectrum may not write but can draw or dictate their thoughts into a tape recorder.

10. Seek friendships One friend can make all the difference. Many individuals on the spectrum choose friends who are much younger and who do not make judgments about them as their age peers do.

Sometimes an older individual can be helpful too. Also, finding a social group for individuals on the spectrum can be great too. Sometimes an individual may find his first true friends there.

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12. Enjoy relaxation Allowing your body to relax can be very powerful. Dr. June Groden has a relaxation video and a book on teaching relaxation using a gradual relaxation technique. Individuals on the spectrum can benefit from just learning this skill but it is even better if they can learn techniques to relax themselves when they are in stressful situations. Also, using a biofeedback device is helpful. My family used a device that read the body temperature and as the individual became more relaxed (using relaxation and visualization techniques), the device would quiet till it was silent and the individual was relaxed. Jean-Paul loved it!

13. Join an advocacy group Jean-Paul began to speak to groups about his autism when he was 18. Sharing his story with others helped his self esteem and his image.

He became active on many boards such as the Autism Society of America Chapter, People First and TASH. He was even chosen for the Governor’s Commission on Autism. Jean-Paul says, “He does not want others with disabilities to suffer as he had to while being bullied.”

For my son, the healing was a process. He spent many years working on his feeling of being bullied and trying to deal with himself.

Jean-Paul had to adjust to being different in a society that does not value differences. This was a huge challenge and something as a family we had to work through. The moral of the story for Jean-Paul was when those around you traumatize you, it takes time to learn to accept and love who you are and the moral of the story for me as a mom is I realized healing comes from within. We can only offer our love, support and acceptance to our loved ones but the work of the healing starts within and it is a long-term process, so start today.

ABOUT THE AUTHOR Julie Donnelly, Ph.D., an adjunct associate professor for the University of Missouri where she teaches autism classes in their Masters program in autism. She keynotes conferences, gives presentations, consults and publishes internationally. Julie is the mother of Jean-Paul Bovee, who experiences autism.

References Cautela J.R. & Groden J. (1996). Relaxation: A Comprehensive Manual for Adults, children and Children with Special Needs. Providence, RI: Groden Center Inc. Donnelly, J. A. (2005). Respectful Counseling of Individuals on the Autism Spectrum, California Speech and Hearing Association Magazine. 35 (2).

Willson, R. & Branch, R. (2006) Cognitive Behavioural Therapy for Dummies, West Sussex, England: John Wiley & Son, LTD.

FEATURE

Bereavement and Autism: A Universal Experience with Unique Challenges BRIAN WONG

Bereavement and grief are universal experiences in all of our lives. The prevalence of autism is rising; those on the spectrum and neurotypicals will be interacting with each other more. Schools are gradually becoming familiar with how to support these students.

There will be more families with members on the spectrum and every family will experience bereavement. Recovering from grief is a process that is unique to each individual and is all are affected differently. For individuals on the autism spectrum, however, other factors may affect their grief recovery process. Individuals with autism often have challenges with theory of mind and empathy, abstract thinking, executive functioning, and perseveration.

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In December 2004, my mom died at the age of 54 from melanoma when I was 15 years old; a few years later I was diagnosed with Asperger Syndrome. Looking at my life now, I made it through the grief recovery process.

I have majored in psychology with a minor in counseling, and will be graduating this month from the College Program for Students with Asperger Syndrome at Marshall University in Huntington, West Virginia. During my academic years, I have dealt with grief by taking “Sociology of Death and Dying” and “Death and Grief Counseling.” My volunteer experience in the field has been with Hospice of Huntington in Huntington, West Virginia and with the Wendt Center for Loss and Healing in my hometown the District of Columbia.

I have been to 17 funerals and 4 weddings.

I hope to eventually pursue my Ph.D. in psychology and specialize in bereavement.

Combining my personal experiences and academic knowledge, I have had the unique experience and challenge that many individuals on the spectrum may have when dealing with bereavement. I will first give an introduction of bereavement, and then I will discuss the unique challenges.

There are many equally important events in our lives that our parents and teachers help us prepare for. However, does everyone attend college? Does everyone know when they will have a wedding or if they will marry? Are all of us 100% certain that we will raise children with our future significant others? No. However, we can be absolutely certain of one thing in our lives, besides taxes, and that is loss. At some point in our lives someone close to us will die, if not already.

The terms grief and bereavement are often used interchangeably. However, there is a difference. My favorite definition of grief is “the normal and natural reaction to loss of any kind” and “the conflicting feelings caused by the end of or change in a familiar pattern of behavior” (James & Friedman, 2009, p. 3).

Grief does not always have to involve a death.

Sometimes an individual has grief from a loss that others may not recognize as a loss to be grieved; this type of grief has been coined as disenfranchised grief by Kenneth Doka (Doka, 2008). Bereavement is the death of a loved one. In psychotherapy grief appears as themes in the lives of clients regularly and is often overlooked; the issue of grief appears far more often in therapy as an underlying cause or contributing factor to their troubles, rather than the presenting issue (Humphrey, 2009).

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Brian and his mom at the Liberty Bell in 2003

Grievers often go through a grief recovery process. There are different models for the grief process. My favorite model is the Task and Mediator Model by Worden (2009); what affects a griever’s journey through the Tasks are the Mediators of Mourning. There are four Tasks of Mourning (Worden, 2009, pp. 35-54) and seven Mediators of Mourning which I will share below: TASKS OF MOURNING

A support system is vital to grieving individuals. While the availability of a support network may not always be an issue, the quality of the support network is most important. It is not uncommon for members in the support network to invalidate the griever’s feelings (James & Friedman, 2009; Pomeroy & Garcia, 2009). At funerals, I have heard people say things such as, “She is no longer in pain,” “She is home with God,” or, “She wouldn’t want to see you cry.” It often takes a month or two for reality to sink in. That is usually when grievers tend to reach out for support. James & Friedman (2009) point out: “It is only natural and quite healthy for people who are caught in a grieving situation to seek solace from those around them. However sometimes, it becomes abundantly clear to the griever that friends and associates just cannot help. Even though they are well meaning, they often say things that can seem inappropriate (p.39). The support system is vital to maintain through significant dates such as anniversaries, birthdays, holidays, etc. One common challenge I have seen in my experience is that the support network is available shortly around the time leading up to the death or funeral, but not available in the future when the reality of the loss becomes clearer.

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1. Accept the Reality of the Loss. Even if the death was anticipated, shortly after the death there is usually a feeling that the death has not happened. In my personal experience, people are usually able to go through this first task with no difficulty; they soon notify the funeral home, family, friends, and others of the death. However, there are rare times when a loved one will deny the actual death. There is also the denial of the meaning of the loss; an individual may react to the death by saying that the person who died was not important to her or him in some way. Sometimes the feeling of numbness is mistaken for denial (James & Friedman, 2009).

2. Process the Pain of Grief. Often this second task can be hindered by family and friends by distracting the griever from their emotions.

This can influence the griever’s belief that they should not grieve or express their emotions.

Sometimes people can invalidate a griever’s feelings; this can also impact a normal grieving process. At times there are those who believe that everyone should receive counseling or therapy. However, intervention can make the situation worse. According to Bonanno (2009), the one-size fits all approach to grief counseling

has proven to be “notoriously ineffective but sometimes even harmful” and “psychological interventions do sometimes actually make people worse, and this usually happens when the intervention is unwarranted and interferes with a natural recovery process” (p. 105).

3. Adjust to a World Without the Deceased.

Adjusting to the loss includes restructuring daily routines which can be described as an external adjustment. Other adjustments involve our perceptions and thoughts of life and reality as a result of the loss which can be described as an internal adjustment. For the first two months after my mom’s death, when I walked home from school I would shout, “Hello, mom!” I was not in denial of her death; it was out of habit.

Establishing a new norm will come gradually. I also questioned why God would let my mom die.

4. Find an Enduring Connection with the Deceased in the Midst of Embarking on a New Life. This task is often the most challenging; many confuse this task with letting go or giving up the relationship. The goal of this task is to emotionally relocate the deceased in life. Those who knew the deceased, as a group, grieve the person who died. Each individual will grieve the unique relationship they had. There are mediators that will affect how we individually will grieve a loss.

Regardless of how well two people knew the deceased person, their unique relationship and their individual differences will affect their grief recovery process as they go through the Tasks of Mourning.

Mediators of Mourning 1. Who is the Person that died? The connection to the deceased person will affect how one grieves. For example, the death of a parent will be grieved differently than the death of a spouse. The death of a professor will be grieved differently between the faculty and the student body.

2. The Nature of the Attachment. What was the quality of the relationship to the deceased?

Were there any unresolved conflicts with the deceased or regrets? The attachment style is also important. Unresolved issues with the deceased can rob the griever of having a chance at resolving the issue or repairing the relationship.

3. How the Person Died. Whether the death was anticipated or not can impact the griever. In cases of expected death, such as illness, there may be the opportunity of gradually adapting and resolving unfinished business. Often in this situation, the family of the loved one will experience anticipatory grief, the grief over losses brought upon by the illness as well as losses that will continue to occur (Pomeroy & Garcia, 2009). In my experience the question of whether anticipatory grief helps with post-loss grief should be determined by the individual griever. If the deceased died suddenly or violently, it can preoccupy the griever with thoughts of whether the death could have been prevented. Sometimes the death can be violent to the extent that the body could not be recovered or was damaged beyond recognition.

Even if the griever knows their loved one died, their sense of reality of the death can

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be affected in circumstances which the body was not able to be viewed; this can affect the griever’s ability to accomplish the first task of mourning and accepting the reality of the loss.

Another factor is the stigma attached to the cause of death; death by suicide and AIDS are examples of deaths that can be stigmatized.

4. Historical Antecedents. Previous losses are important. Sometimes previous losses have not been adequately grieved and the current loss provides an opportunity for the griever to finish grieving the previous loss. When my maternal grandparents from Minnesota died in their 80’s, it was not a shock, due to their age. It was emotionally difficult given my mom’s death two to three years earlier; I was still in the early phases of grief. Knowing about previous losses can be helpful in supporting individuals in their grief process.

5. Personality Variables. The person’s age and gender contributes significantly to the reaction to loss. Is the child at an age where they can comprehend death? Children cope with loss differently than adults. Children will often express their feelings through behavior and play (Walsh-Burke, 2006). It is not uncommon to see children playing with other children acting out the death. This is their way of comprehending and processing what happened. With gender, there are two styles of grieving (Humphrey, 2009; Pomeroy & Garcia, 2009). Men tend to cope by focusing on activities whereas women tend to focus on emotions and feelings which often times is intuitively natural for women.

While these two grieving styles are dominant in men and women, respectively, there is usually a blending of the two in both.

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6. Social Variables. Emotional and social support is beneficial to the griever. Not only is the availability of a support network important, so too is the quality and satisfaction. Grievers with a strong support network are likely to have a lower chance of becoming clinically depressed (Worden, 2009). Individuals who are involved in more than one social role are likely to adjust to the loss more easily than those who are not. Active involvement in some type of community also helps.

7. Concurrent Stresses. Often with a death there can be other life events that are stressful.

When I was 14 years old, my paternal grandpa died in April 2004 in his 90’s from injuries due to a fall. My mom was in the early phases of interferon treatment for her melanoma.

Given my grandpa’s age, his death was not a surprise, but seeing my mom go through cancer treatment added more stress to my life.

Brian and his mom at the Grand Canyon in 2002

Given the universality of bereavement and the rising prevalence of autism, it is important to address the uniqueness of bereavement to individuals on the spectrum. Bereavement can be a challenge for anyone. However for individuals on the spectrum, there may be additional challenges. I have found at least two peer-reviewed research articles that may help with additional challenges for individuals with autism. The authors are: Berthier (1995) and Marston & Clarke (1999).

Barbara Becker-Cottrill, Executive Director, West Virginia Autism Training Center at Marshall University where I attend and a member of Autism Society Panel of Professional Advisors says, “There is very little research in this area and there needs to be suggestions for helping individuals on the spectrum understand and cope with death.” Also, Barbara mentions since all individuals with on the spectrum will face bereavement in their lives, this is an area that deserves more research attention, particularly focused on strategies and interventions.

Interacting with other bereft individuals may be a challenge. People mean well but tend to say things that are awkward and sometimes insensitive. However, given those on the spectrum may unintentionally come across as nonchalant and have challenges with Theory of Mind, this may be an area of concern; their intent may be the same but others may not see it the same. When talking with the family and others they may have difficulty understanding others are grieving differently. My advice before going to a funeral and talking with other mourners is to rehearse with the individual on

the spectrum what he or she might say when expressing condolences, either verbally or written, and to talk about how saying certain things to a grieving person may affect them.

Interpreting what people say literally and being right-to-the-point are common with individuals on the spectrum. At funerals metaphors are often used to avoid saying, “dead” or “death.” The metaphor, “He is sleeping,” is generally not wise to use with young minds. However an adolescent or an adult on the spectrum, depending on level of development, may interpret that metaphor literally and be afraid to sleep that night. Another issue is sometimes using the words “dead” or “death” may be too harsh.

Sometimes the bereft family may prefer the cause of death not be mentioned, due to reasons such as cultural views and/or stigma surrounding the cause of death.

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Dealing with death and grief involves abstract thinking. Understanding where the deceased person may have gone is one challenge. “The concept of heaven or an afterlife is difficult to comprehend for many of us,” says Becker-Cottrill. “But for many people with ASD it is totally incomprehensible.” This may be a challenge due to the fourth task of mourning, especially, if the body was not viewed. Being able to appropriately emotionally relocate the deceased individual in your life may be a challenge; this is definitely an abstract process. “Communicating abstract subjects such as feelings and fears is difficult,” says Marc Ellison, Associate Director, West Virginia Autism Training Center at Marshall University. Ellison has supported individuals with autism in the face of bereavement as well as families grieving the loss of a child with autism. He states, “finding tangible ways to routinely and regularly communicate these feelings and thoughts would likely be helpful.”

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Another challenge is adapting new strategies.

Since individuals on the spectrum like routine and doing things the same way, this can be a challenge with the third task of mourning with externally adjusting to life without the deceased. New routines have to be established, especially if the deceased person was part of the individual’s daily life. Adapting new strategies is linked to difficulty with executive functioning. Ellison says, “Challenges related to executive functioning may pose significant barriers to overcoming grief.” In situations of anticipatory grief, Becker-Cottrill recommends adjusting early. “I would recommend that a consistent family member or person close to the family be selected to carry out the routines the terminally ill family member would typically do,” she says. “Over time and the eventual death of the person, the child’s routine has been reset which could avert behavior challenges.”

Grievers often go through a phase of trying to make sense of the death or overcoming regrets of what should or should not have been done. With the tendency for those with ASD to perseverate on topics of their interest, matters surrounding the death can become their new interest. According to Attwood (2007), “the child or adult may collect information on a topic that is causing emotional distress or confusion, as a means of understanding a feeling or situation” and the interest could rise to an intense level that is “no longer pleasurable or of intellectual psychological value” (p. 190). Becker-Cottrill mentions this perseveration can be due to challenges with abstract thinking. “Death is something that they would perseverate on,” she says. “Not

having any concrete or acceptable answers to why, what, and how this happened can be extremely difficult and difficult to let go of until a satisfactory answer comes into play.” When my mom died, obituaries became my interest. I would go online and sign obituary guest books of people who died in a similar way as my mom.

I was only a child and, for me, doing this helped me cope and feel less alone. If the new interest does not promote healing there is a chance that the griever could experience prolonged grief issues. My personal advice is to let the individual find his/her on way in connecting with the death. But it is just important to monitor how well they are coping.

A social support network is essential in grief recovery. However, for individuals on the spectrum this can be a challenge. “Developing a support system may be a challenge due to executive functioning difficulties and challenges with social communication,” says Ellison.

“With folks [on the spectrum] the expression of feelings associated with bereavement is difficult or, perhaps for some, even impossible.

In those cases it’s vital to find some means through which they may express their grief.”

Individuals with autism who are nonverbal may need to express their feelings through other means, such as art therapy or through online support groups. I found online support groups beneficial. Neurotypicals might not understand how to interact with individuals with autism. Ellison suggests that the individual on the spectrum may benefit from social skills and communication support and training to benefit the most from a bereavement support network. Another consideration with social

support networks is the age of the individuals.

Since it is not uncommon for those with autism to have friends that are either older or younger, it may be a challenge to seek support from others of the same age who have experienced a similar loss. While it is beneficial to be in a support group within the same age range, it is best to develop a support network that meets the individual needs. I found support groups helpful, but I was not comfortable with talking about my feelings to strangers face-to-face at the time. I found reading books about grief and textbooks on grief counseling and therapy very helpful. The book that I highly recommend is The Grief Recovery Handbook: The Action

Program for Moving Beyond Death, Divorce, and Other Losses by John W. James and Russell Friedman, who also wrote a book for parents to help children, it’s called When Children Grieve.

I believe early discussion or exposure to bereavement in a concrete way could be beneficial and could assist the individual to use previously-learned knowledge when the time comes. The first funeral I went to was when I was 9 years old. My paternal grandma from Massachusetts died in December 1998 in a car accident while crossing the street.

My parents told me what happened right after my dad received the phone call. They answered my questions in a concrete way. I went to the funeral and saw her body. The police didn’t charge the driver; so my grandpa filed a wrongful death suit. My dad let me sit in on the meetings with the attorney during our monthly visits to grandpa. My dad did not tell me anything or give me any details with what was happening unless I asked. My dad

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told me that when I would ask questions he would know I was ready to talk about it. This was a concrete way for me to understand the circumstances surrounding her death. Another concrete way to start a talk about loss is watching a bereavement themed movie that is age-appropriate. Regardless of how the topic of loss comes up, encourage questions but let the individual lead the discussion by the content and frequency of their questions. When young minds ask about death, it is usually a sign they are mature enough and ready to talk about it.

Bereavement and grief are inevitable and universal events in our lives. Each griever is just as unique as the relationship they had with the person who died. The goal of grief recovery is to establish a new norm and to emotionally relocate the deceased loved one; how an individual will go through the process will be affected by different mediators. How individuals on the spectrum will go through the tasks of grief will be also mediated by the individual’s empathy skills interacting with other grievers, ability to think abstractly, comprehension of the situation, available support network, and how much they might perseverate over the death.

With the different challenges those with ASD may face, it is important to be actively involved in their support before, during, months, or even years after a major loss. Death is universal no matter what your abilities are!

References Attwood, T. (2007). The complete guide to Asperger’s Syndrome. (First edition).

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ABOUT THE AUTHOR Brian Wong is a 2013 graduate of Marshall University in Huntington, West Virginia where he was a student in the College Program for Students with Asperger Syndrome. He majored in psychology and minored in counseling. Brian has volunteered in the hospice setting and at a bereavement camp for children. Brian’s area of interest is psychology with a specific focus on bereavement in individuals on the spectrum.

Brian has presented at many conferences, including, Marshall University’s College of Liberal Arts Research and Creativity Conference and the 22nd Annual Tri-State Psychology Conference at the University of Charleston. He has also authored the book, Helping a Grieving Friend. He plans to work in the field of mental health and attend graduate school. His research on bereavement and grief can be read at http://marshall.academia.edu/BrianWong.

WEBSITES www.griefrecoverymethod.com Philadelphia, PA: Jessica Kingsley Publishers.

Berthier, M. (1995). Hypomania following bereavement in Asperger’s syndrome: A case study. Neuropsychiatry, Neuropsychology, & Behavioral Neurology, 8(3), 222-228.

Bonanno, G.A. (2009). The other side of sadness: what the new science of bereavement tells us about life after loss. Philadelphia, PA: Basic Books.

Doka, K.J. (2008). “Disenfranchised Grief in Historical and Cultural Perspective.” In M.S. Stroebe, R.O. Hansson, H. Schut, and W. Stroebe. Handbook of bereavement research and practice: advances in theory and intervention. (pp. 223-240). Washington, DC: American Psychological Association.

Humphrey, K.M. (2009). Counseling strategies for loss and grief. Alexandria, VA: American Counseling Association.

www.psychologytoday.com/blog/broken-hearts

moving beyond death, divorce, and other losses.

Marston, G.M., & Clarke, D.J. (1999). Making contact – bereavement and Asperger’s syndrome. Irish Journal of Psychological Medicine, 16(1), 29-31.

Pomeroy, E.C. & Garcia, R.B. (2009). The grief assessment and intervention workbook: a strengths perspective. Belmont, CA: Brooks/ Cole, 2009.

Walsh-Burke, K. (2006). Grief and loss: theories and skills for helping professionals. Boston, MA: Pearson Education Worden, J.W. (2009). Grief counseling and grief therapy: a handbook for the mental health practitioner. (Fourth edition). New York, NY: Springer Publishing.

James, J.W. & Friedman, R. (2009). The grief recovery handbook: the action program for

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FEATURE

DSM-5 changes the good and the bad MICHELLE GARCIA WINNER, MA, CCC

I have worked and studied in the field of autism since 1979; at that time the focus of our treatment was those with autism who had very significant cognitive and languagebased learning challenges. I began my work in the field by helping to de-institutionalize adolescents with autism and to prepare them for community living. I have been asked to share my thoughts on the proposed changes to the fifth edition of the Diagnostic and Statistical Manual (DSM-5) as they relate to individuals with autism and social learning challenges. If you are unfamiliar with why the changes are being made, google this concept to learn more at The American Psychiatric Association. (www.apa.org) Those of us who have worked in the field for a long time can look historically at the changes that have happened over time. While the first

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step was to get individuals out of institutions and learn social-behavioral strategies to help them learn to function across a range of environments; the next step was acknowledging that those with social learning, executive function and sensory challenges existed in a much broader sense. In 1994, the DSM-IV introduced what we have come to call autism spectrum by establishing Asperger Syndrome (AS) and Pervasive Developmental Disorder not otherwise specified (PDD-NOS) as their own diagnostic categories. Technically, these diagnoses were listed under the category of Pervasive Developmental Disorder but to the public they were embraced as autism spectrum, or now commonly referred to as Autism Spectrum Disorder (ASD) or Autism Spectrum Conditions (ASC) which includes a range of sensory, executive function and learning abilities.

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Autism has long been approached as a spectrum that is diverse, composed of people with different and varied learning abilities and disabilities. My greatest concern is how we, as professionals and parents, use this one term to describe a wide range of functioning. I have already seen researchers routinely describe their studies as focusing on “people with ASD” without the title of the study referring to functioning level. This is important because it leads to a homogenization of a heterogeneous population. This, in turn, may mean the treatments developed will become less sensitive rather than more sensitive to important factors such as language, cognition, sensory regulation, etc. Or that research neglects to study how these different functioning areas manifest in different levels within the spectrum or which treatments are better aligned to different subsets of this population.

I have a similar concern for programs that operate within systems (private schools, clinics, and some public schools) which tend to create categorical classrooms or treatment programs based on the singular label of student (even though we all know this is not supposed to happen). People like to think in black and white terms and having just one diagnostic label, autism spectrum disorder , even when defined with three levels, is still a black and white term.

For many, this may suggest (or give license to) viewing treatment in a way that so many parents and professionals have fought against for years: that there is a “one size fits all” treatment for ASD. This type of mindset is diametrically opposite of what this population needs.

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The number of people receiving a diagnoses of ASD has skyrocketed for a range of reasons and the media took notice of autism. Having “autism” went from a condition rarely spoken of in the media to front page news. Research related to ASD also accelerated providing more clarity but not total clarity. While we had different diagnostic labels related to ASD those of us working closely in the day-to-day lives of our clients noticed that the diagnostic labels did not appear to be applied with any dependable continuity. Therefore a student who was diagnosed with AS or PDD-NOS may have been considered to have autism by one examiner and then by another examiner to have ADHD. That said, the new proposed changes may create a whole host of other issues and is pretty significant and will not only affect those whom the diagnostic labels are applied but also funding allocation and service delivery systems.

In a nutshell, clients will no longer be diagnosed as having “Autism” versus “PDD-NOS” or “Asperger Syndrome” as all of these different classifications will officially go away. However, individuals with ASD will be referred to as having one of three severity levels (Figure 1). In the middle of all these changes are the parents who are trying to determine what this means for their specific child(ren) and adults concerned with what the changes may mean for them.

Individuals whose “severity” falls outside the bandwidth of these three levels but who exhibit significant social communication challenges will then possibly be diagnosed as having Social Communication Disorder (see definition).

Figure 1 Severity Levels for ASD

Restricted interests & repetitive behaviors

Severity Level for ASD

Social Communication

Level 3 ‘Requiring very substantial support’

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.

Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres.

Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

Level 2 ‘Requiring substantial support’

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.

Rituals and repetitive behaviors (RRB) and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB are interrupted; difficult to redirect from fixated interest.

Level 1 ‘Requiring support’

Without supports in place, deficits in social communication cause noticeable impairments.

Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.

RRB cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB or to be redirected from fixated interest.

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Dr. Amy Weatherby is the first speechlanguage pathologist to serve on the APA board and has helped to craft the language of this newly defined category. The language highlights those with social communication/ social pragmatic challenges who do not exhibit the more “restricted, repetitive patterns of behavior, interests, or activities” which has been one of the diagnostic hallmarks of ASD. Other diagnoses, which often overlap with people with social learning challenges (e.g., ADHD, bi-polar, social anxiety disorder, etc.), will also continue to be considered in the diagnostic mix of social, attention, and executive functioning symptoms.

I won’t get caught up in the discussions about whether or not this shift is a good idea, but

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instead want to focus on what to do now that we know these changes are coming our way, even though we have yet to see the finalized DSM-5. The questions many have are what happens to those diagnosed with Asperger Syndrome? Will this descriptive label really go away? None of us know the answer to these questions for certain, but my best guess is that Asperger Syndrome as a descriptive label, even if it is not officially included in the DSM-5, is here to stay. High functioning autism (HFA) has never been an official diagnostic descriptor sanctioned in previous or the current edition of DSM (DSM-IV): yet it is a commonly used descriptor not only by lay people but also by researchers who use it to define their study subjects. Furthermore, Asperger Syndrome is more than a diagnostic label; it has become a

cultural identifier for many of our students and adults who recognize themselves as AS and have sought networks of support, friendship and collaboration within it. Many people want to know what happens to those clients already diagnosed with Asperger Syndrome or any other label currently included as part of ASD? Will they need to be diagnosed again?

How will the funding be distributed? One of the DSM-5 committee members mentioned that those previously diagnosed with Autism, Asperger Syndrome, etc. were likely to be grandfathered into the current ASD diagnosis.

However, those previously diagnosed with PDD-NOS may need to be re-evaluated using the new DSM-5 criteria. When asked what about community funding for those with ASD and related disabilities, the response was that every community will have to figure out how to address this question. State and local systems that serve individuals need to start getting organized now to figure out how they will handle these changes as they are coming our way. If you ask will the new changes alter the number of people funded to receive treatment services? The DSM-5 committee’s proposed revisions may purportedly reduce the number of people diagnosed with Autism Spectrum Disorder but it also includes a new category, Social Communication Disorder, through which they can potentially receive services. Right now, there are two significant public funding models in the U.S. for students with social learning challenges.

One is allocated through state disability service departments that show a level of need and this qualifies an individual for services. In

California the funding flows through “Regional Centers,” in many states the funding flows through “Waiver” programs, and I am sure other states call this bucket of state and federal funding by a different name. This funding has never been based solely on a diagnostic label; there is a criteria an individual must meet to be considered for funding. These past years have shown reductions in public funding and a tightening of who qualifies for these funds.

The clients who will no longer be considered ASD under the new DSM-5 are the subgroup of clients who have not been guaranteed funding in the past given their high functioning profiles. At present it is completely unclear how those students who currently qualify under the existing diagnostic system will fare, and how state/federal departments managing these funds will handle the new change. The second major funding stream flows through the public schools, for students who are eligible for IEP or 504 plan services. Public schools are required to independently assess a student’s learning abilities and disabilities to determine if a student is eligible for special education under one of the 13 eligibility categories. A medical professional’s diagnosis (Psychiatrist, psychologist, etc.) does not directly translate into school special education services in the form of eligibility for an IEP, this is federal law.

Schools are to independently assess one’s educational needs (in most states across the country). However, one of the school’s eligibility categories in each state is Autism. The kicker is that each state gets to decide for itself what the eligibility criteria are for that category. Hence, a student may be considered to have autism.

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The two funding shifts that a state will need to look at in order to provide services to individuals on the spectrum is a two-pronged approach:

1

Each State’s Department of Education needs to start considering if their state’s eligibility category descriptions need to be revamped in light of the proposed DSM-5 changes. I know some states have eligibility descriptions that align directly with the DSM-IV while other states, such as California, never changed their eligibility categories with the recognition of Asperger Syndrome in the DSM-IV.

2

While it is clear that each state’s school district personnel will continue to determine if a student qualifies for services under these eligibility categories, we must recognize that school professionals can be influenced by the diagnostic reports from medical professionals in their community. To

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this extent, each state needs to proactively determine how to address and serve students who will now be diagnosed with the entirely new diagnostic category, Social Communication Disorder. If a student with that diagnosis qualifies for an IEP, what is the best education eligibility category to place that student in? Will schools modify their categories to include Social Communication Disorder (or SCD)? What it likely means is that even more students will be referred for speech and language services in the schools without the possible benefit of an “autism specialist.” Or perhaps schools will rid themselves of the term “autism specialist” and place students under the jurisdiction of “social communication specialists” to keep the door open so this broad range of students still receive some vital services to address their social communication challenges in the mainstream classroom.

How will the DSM-5 diagnostic changes impact coverage for private services by insurance companies? Insurance companies in some states are being mandated to provide services for children with ASD. It is likely that these insurance companies will take a definitive stance in refusing to cover services such as Applied Behavioral Analysis (ABA) therapy for those who are not “ASD” under the new definition. However, consider that many (but not all) clients who don’t fall into the DSM-5 ASD category levels of severity 1, 2 or 3 are less likely to need the ABA model of treatment as they have developed language and need to learn a more complex, synergistic and dynamic treatments, offered through Cognitive Behavior Therapy set of communication skills that are beyond the more linear stair-stepped approach offered by traditional ABA programs.

Many insurance policies will consider covering a student who has mental health needs or social communication needs if the therapist can document the need for services and the benefit from services on an ongoing basis. However, insurance companies don’t cover anyone enthusiastically and they will try to find reasons (very often, not always) for refusing services.

One significant issue with our clients is that insurance is very unlikely to cover our students as they transition into adulthood or live as an adult.

Another question asked is what about those who will now be diagnosed with Social Communication Disorder (SCD) instead of ASD? My clinical experience has taught me that ASD does not singularly define those with social cognitive learning challenges. There is

a continuum of learning challenges and needs which cannot be easily defined by the idea that some of our individuals on the spectrum with social learning challenges have more “mild” needs than others with more “severe”.

However, those who present as more “mild” are held accountable to their behavior and scolded for their challenges since we have higher expectations for them even though their problems are resulting from cognitive learning differences. Those with these types of issues may be diagnosed with Level 1 ASD, but they may also be diagnosed with SCD, shyness, social anxiety disorder, bipolar, ADHD, etc. Researchers (Matson, Hattier & Williams, 2012; Matson, Kozlowski, Hattier, Horvitz & Sipes, 2012; Gibbs, Aldridge, Chandler, Witzlsperger & Smith, 2012) are concerned that the algorithm for qualifying for ASD is just too strict and removes people who have serious issues but who may not meet all 5 of the 7 descriptors. Their findings show a significant percentage of people currently diagnosed with ASD would no longer qualify (-47.74%) using the current DSM-5 proposed criterion. The SCD diagnostic descriptor identifies individuals with global social communication issues, not just students with challenges in social language.

This means our assessment procedures will also need to change to account for nonverbal social pragmatic challenges and to assess how a client does in the moment of social interaction rather than just test them on knowledge they use to understand another person’s social issue outside of the current need to address that challenge.

Currently most standardized assessments are based on Social Language competency and fail to evaluate how one effectively reads nonverbal

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cues from the context as well as the body and face of others. We do not presently have standardized tests to assess how one codes his or her social behavior in the milliseconds to 2 seconds we have to interpret and respond in normal situations. In California, our state Speech and Language Association has not updated the manner through which we can qualify students for speech and language disabilities since before the DSM-IV was written.

There is no recognition of a pragmatic social communication sample when standardized tests fall short. It is my clinical experience that those who have serious social problems with regards to how their social behaviors are interpreted by the public are those exclusively defined as having ASD. For this reason in my upcoming writings, I will refer to this group as being on the spectrum of ASD and SCD. I know this may be controversial but as a practical clinician it is the only way I can wrap my head around providing treatment for a range of people who come to me with a range of diagnosis yet have similar but different types of social challenges.

I encourage ASD support groups to welcome those who will be diagnosed with SCD into their fold and provide support for them as well.

Also, many professionals are asking how might the shift to Social Communication Disorder change assessment and treatment strategies?

It is my best guess that students diagnosed with Social Communication Disorder will be referred to a speech-language pathologist as the first level of services. A lot more students will receive Speech Language Services and the Speech Language Pathologist (SLP) will become the primary case manager. Our national and

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state organizations for SLPs will need to get organized and determine how to handle this influx of patients as primary treatment providers for students diagnosed with SCD. Currently there are many SLPs who have taken a strong interest in the more complex, yet significant social learning challenges of this population.

But there are also many in the field who want little or nothing to do with this type of student.

How will social thinking be impacted by these changes? Given that the methodologies created around Social Thinking have never been dependent on using diagnostic labels to clarify service delivery, utilizing Social Thinking to help provide treatment ideas for those with level 1 ASD and SCD and other related social learning challenges will continue to be a good choice. Furthermore, the Social Thinking-Social Communication Profile™ may provide extra assistance in our community to continue to define students’ social learning needs beyond the more basic definitions provided in the DSM-5.

Also, how can we be proactive about all this change? The recommendation is that diagnostic reports now being written to assess students/clients not only provide the relevant DSM-IV diagnosis but also explain what the diagnosis should be given when DSM-5 is released. This will help avoid the need to reassess the same students again after the 2013 changes. I also recommend that individuals contact your local and national professional organizations to encourage them to let their constituents know how they advise handling these changes within their own profession.

It is also important that local and federal funding agencies (schools, insurance companies, access to funding for disabilities) be proactive in developing a plan for how to manage the shift in diagnostic labeling.

Families and care providers are anxious to know how each agency will handle this and if they will require re-assessments of persons currently qualifying for funding, how they will go about this process. State Departments of Education will also have to review their current eligibility category for students with “autism” to decide if it needs to be updated in light of these anticipated changes; if so they should do this now! They also need to discuss how they will incorporate students with Social Communication Disorders into the IEP eligibility system and communicate this with the public.

It is unclear how other disciplines will formulate plans for this shift and acquire the necessary skills for working with ASD and SCD students. The teaching of social pragmatics, the development of the social mind as it relates to the growth of perspective taking, and assessment of the social context are not typically part of the educational curriculum for mental health or related services professionals.

Whether we call our students ASD or SCD, they are an increasingly prevalent part of caseloads across a range of professionals inside and outside our educational system.

Even though we may describe these students as having “mild” social skills problems, their challenges nonetheless deserve our attention and forethought. University programs that prepare educators and related service professionals need to explore how they can

adjust their curriculums to address this growing population and help soon-to-be educators, SLPs, behaviorists, counselors, psychologists and other professionals better understand the needs of our higher functioning students and their significant challenges. The reality is that our more obviously challenged social communicators are easily identified not just by specialists but by the public as having serious social learning difficulties, meaning we, the observers, tend to readily shift our social expectations and make accommodations for this group. However, many individuals who miss subtle social cues, may not be identified by their peers (or many professionals) as having a learning challenge. Unfortunately, they are held to the same social standards as their peers.

This group runs a greater risk in making subtle social errors for which they are blamed for or at minimum, making others feel uncomfortable.

This group is at the greatest risk for making subtle social errors for which they are blamed or at minimum, lead others to have uncomfortable thoughts about them. These clients can, in turn, “read” that they are not easily accepted by others even when they have strong social desire, leaving them at a significantly increased risk for severe social anxiety and/or depression.

Whether we are parents of these individuals, or the professional caregiver, our goal is to be able to more seamlessly recognize their challenges, understand their needs, and offer appropriate treatment. Cognitive behavioral therapy with Social Thinking and social anxiety management strategies appears to be a promising practice in achieving that goal.

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In conclusion, the DSM-5 introduces changes to our current diagnostic system that are compelling. On one hand they may allow us to better define the group within the ASD continuum and on the other hand they introduce a new diagnostic category that may or may not be welcomed by the public and our present system of providing treatment.

As each parent already knows, the labels provided do not define children and adults who carry those labels. At best they raise a flag to explore treatment ideas related to social, sensory and executive function learning and to understand related mental health issues for each group.

Just remember, the person is the exact same person he or she was yesterday as he will be tomorrow; only the label will change!

American Psychiatric Association DSM-5 Development (Retrieved from www.dsm5.org) Autism Spectrum Disorder Must meet criteria A, B, C, and D: A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1

Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.

2

Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and bodylanguage, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3

This article was adapted from a blog post about the DSM-5 posted on www.socialthinking.com in 2012.

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Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people.

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1

Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypes, echolalia, repetitive use of objects, or idiosyncratic phrases).

2

Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3

Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4

Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

Social Communication Disorder A. Social Communication Disorder (SCD) is an impairment of pragmatics and is diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability.

B. The low social communication abilities result in functional limitations in effective communication, social participation, academic achievement, or occupational performance, alone or in any combination.

C. Rule out Autism Spectrum Disorder (ASD).

Autism Spectrum Disorder by definition encompasses pragmatic communication problems, but also includes restricted, repetitive patterns of behavior, interests or activities as part of the autism spectrum.

Therefore, ASD needs to be ruled out for SCD to be diagnosed.

D. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities).

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) D. Symptoms together limit and impair everyday functioning.

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Bibliography American Psychiatric Association, DSM-5 Development: http://www.dsm5.org/ proposedrevisions/pages/proposedrevision. aspx?rid=94; Home/Proposed Revisions/ Proposed Revision A 05 Autism Spectrum Disorder.

Matson, J; Hattier, M & Williams, L (2012) How does relaxing the Algorithm for Autism affect DSM-5 prevalence rates. J of Autism Dev Disorders. 42: 1549-1556.

Matson, J; Kozlowski, A; Hattier, M, Horovitz, M; & Sipes, M. (2012) DSM IV versus DSM-5 diagnostic criteria for toddlers with autism.

Developmental Neurorehabilitation, 15 (3), 185190.

Gibbs, V; Aldridge, F.; Chandler, F.; Witzlsperger, E. & Smith, K. (2012) Brief Report: An Exploratory Study Comparing Diagnostic Outcomes for ASD Under DSM IV-TR with the Proposed DSM-5 Revision. J of Autism Dev Disorders. 42: 1750-1756.

ABOUT THE AUTHOR Michelle Garcia Winner, MA, CCC is a speech language pathologist who specializes in the treatment of students with social cognitive challenges, which includes diagnoses such as Autism, Asperger syndrome and non-verbal learning disorder. She has a private practice in San Jose, California where she works with clients, consults with families and schools and she travels internationally giving workshops as well as being invited to train psychiatrists, psychologists, counselors, and state policy makers. She presents many different all day workshops and helps to develop programs for schools and classrooms.

Michelle coined the term “social thinking” and the related treatment strategies. She has written or co-authored numerous books which are published through Think Social Publishing, inc. Michelle’s goal is to help administrators, educators and parents appreciate how social thinking and social skills is an integral part of student’s academic as well as social experiences as well as being critical for success in adulthood. She was honored with a “Congressional Special Recognition Award” in 2008.

Michelle believes we can all do far more to help our students learn these abstract social lessons.

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So, I Heard You Bought an iPad Melanie H Johnston Getting familiar with my new iPad was just the beginning of a steep learning curve.

It is not that the iPad is so difficult to access; in fact it is fairly intuitive and simple. The learning comes with attempting to get the most out of the iPad, especially getting it set up for users with Autism Spectrum Disorder and other developmental disabilities.

Taking the iPad from start-up to running hundreds of Apps can be a daunting task. The iTunes store offered Approximately 200,000 Apps at release of the first iPad in April 2010 with 5,000 of those Apps being iPad specific. As of January 2013 there were somewhere in the neighborhood of 775,000 Apps available through the iTunes store and Approximately 250,000 of those are iPad specific. That represents an astounding App increase of 515,000 Apps or a 66% increase in less than 3 years. How is anyone supposed to keep up?

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FEATURE

Prior to putting the i-device into the hands of the user, how the device will be used must be defined. Is the device being considered for augmentative communication? Will the iPad be used as part of a therapy plan or a tool to enhance current therapies? Perhaps it will be used to introduce early learning concepts, or academic skills. It may be needed as an inclusion tool to modify work, provide a means for work output or provide classroom accommodations and enrichment.

Consideration may also be given to using it for social skills development and networking, organization skills, self-help and independent living. Answering these questions up front will enable the family/teachers/therapists to make thoughtful and appropriate App choices prior to introducing the device to the user.

Deciding What Apps to Purchase When working with families and professionals I offer the same advice, take your time and do your homework. The ease in which Apps can be purchased can be intoxicating. Impulse purchases of “featured Apps”, “free/lite” promotions and well-intended suggestions use up memory and funds without meeting the needs of your user. Before purchasing any Apps, take time to review and investigate the App. The easiest place to search for Apps is on the i-device itself in the App Store; however, easy access should not be confused with best results. The App store and iTunes store for iPad, iPod and iPhone Apps have a search engine that is part of the website. This allows you to put in an App name, developer name or keyword to search for Apps that match.

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When accessing the App information read the developers description of the App and look at the screenshots provided. Screenshots offer a glimpse at the depth of development and if the shots seem to be lacking, the App very likely will be too. Next, read the reviews.

Read the most and least favorable and as you read consider how you intend to use the App. The reason someone dislikes the App may be the very thing you are looking for in an App. It is also helpful to look at other Apps from the developer and other Apps those have purchased after purchasing the App you are reviewing. I am often asked about Lite or Free versions of Apps. My recommendation is to try Lite/Free versions if the description makes you curious about the App but uncertain about purchasing the full version. Try the scaled down version and make your decision. If the features of the Lite version meet expectation, usually the full version is worth the price for the additional content. I do caution parents and professionals to beware when purchasing educational and language development Apps from foreign developers. While much of the content may be excellent I have found that grammatical and cultural errors exist.

Searching for Apps The problem with iTunes and App Store searches is that they are limited to the keywords chosen by the developers and more often than not those words may not include the words you have chosen for your search. There are several good Apps that are search engine Apps offering different sets of search filters from the App store. These can be helpful when

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searching and most of them are free. It is often helpful to use internet search engines (Yahoo, Bing, Google, etc.) for keyword searches that access independent reviews in addition to the keywords submitted to Apple. Another great avenue is to search for online reviews at independent websites. These reviewers offer additional information on what they like about this specific App and why and reviews frequently include what populations have used the App for. There are websites devoted to Apps for Autism, speech therapy, language development, Special Education teachers, transition, etc. Many of the reviewers offer online video reviews of Apps that allow you to get a glimpse of the App in use which can be helpful when making a final decision, especially when considering App purchases ranging from $25 to $200.

Once user considerations are identified for the i-device, take time to make a list of the therapy and data needs that may be incorporated into App purchases. It is important to give thoughtful consideration to the features of each App, not simply the developer’s intention for the App. In assistive technology this is referred to as “feature matching” and the basic principles for determining need, use and independence apply whether the App will be used for communication, concept development educational inclusion or independent living.

(Gosnell, Costello, Shane; ASHA Perspectives, October 2011.) Start with the basic question, “What key App features will be necessary for this user and for the purpose it is intended to serve?”

Take the time to identify and list the needs of the user and the preferred features before starting a search.

• • • • • •

Sensory-motor factors Cognitive factors Environmental factors Complexity Input/Output method Family, school, staff, vocational support availability

• • • • • •

User preferences and motivation Independence Access Customization Support Reporting/Record keeping

In our clinic, we have developed a Feature Matching chart to help us identify Apps for each of our users. In the process, the user is identified and specific considerations are listed. Before Apps are considered, the immediate needs of the individual user are identified. As each App is reviewed, its corresponding features are marked and the price of the App is listed. Once the review and feature match process is completed it is easy to determine which Apps are the most appropriate for the current user needs.

AUTISM APP FEATURE MATCHING CHART User: Lisa J

Considerations: 5 yrs., uses single words & gestures, receptive language at 3.5, Literacy-primer

X X

Autismate

X

Elmo’s MM

X

X

X

X X

X

X

X

X

X

X

X

X

X

X

X

X

X X

X

X X

X

Free+$.99

X

X

X

X

X

X

X

Free

X X

Annotation

Multiple Users

Save Data

Customization

Readiness Skills

Social Studies

Science

Math

Spelling/Writing

Cost

X

Free/$3.99

X X

Features

Word Prediction

X

Reading

Speech/Articulation

Early Learning

Behavior/Reinforcement

X

X X

Productivity

X

Data/Grades

X

X

Organization

StoryKit MyPlayHome

Social Skills

X

Transition

Direct Instruction

X

Inclusion

Consideration

Tuneville

Recreation/Leisure

App Name

X

Area of Need

Text-to-speech

X

Import File/Data

X

Multiple Ability Learners

X Purpose/Use

Share Data

X

Language Development

Targets

X

X

X

X

$149.99 $3.99

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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 the Executive Director of BRITE Success, LLC, providing services nation-wide to consumers with development 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.

Next issue:

I’ve got my Apps and we are ready to start. Now what??? Preparing the ASD user for the iPad and setting expectations is the first step to having an independent user. It is time to create a plan.

“If a child cannot learn in the way we teach… we must teach in a way the child can learn.”

O. Ivar Lovaas

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 that are now of Transitional age and above.

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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.

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FEATURE

YouTube and Autism Spectrum Disorder MICHAEL RIMMINGTON, BSC MA

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When I first started working with individuals with autism over ten years ago, I was introduced to Paul, a young man about sixteen who lived in a residential setting.

When asked where I would find him, I was told he would be in the main lounge watching videos. Expecting to find him, lounging lazily on a sofa, feet up watching Lords of the Rings or The Matrix, I was quite surprised to find the young man sitting cross-legged on the floor watching old episodes of Count Duckula on video tape and very engaged as he watched.

On the screen, Igor, Count Duckula’s hunchbacked, butler was beginning a whispered conversation with Rory McDuckula his long lost Scottish relative. Paul tightens his eyes and laughs. He then moves forward and without looking at either the shabby old VHS player or the TV screen, he lands his finger directly on the rewind button. The sound disappears and the picture spins rapidly backwards and Paul releases the button just as the scene begins again. Paul’s laughing begins again. This cycle repeats over and over, with him always stopping the video instinctively at the same part.

Over the following weeks my relationship with Paul grows along with my learning about individuals on the autism spectrum.

I learned that Paul did occasionally choose different videos and clips to watch but it was the repetitive adventures unraveling outside McCastle McDuckula that most held his interest.

That was however, until a fateful day just a few weeks later. After many joy-filled afternoons of being not-so-delicately forced into the tape slot

of the old video player and the constant playing and rewinding through the same spot, Paul’s beloved, finger-marked copy of Count Duckula finally snagged around the players large silver reader head, pulled tight and snapped. Paul’s treasured video, his item of special interest, the one thing that went everywhere with him safely stored in his bag was no more. Over the next few minutes and hours Paul’s anxiety levels increased dramatically. He repeatedly ejected and re-inserted the broken videotape with ever increasing frustration when this action failed to resume the picture of his favorite cartoon duck. After many failed attempts of redirection the decision was made to remove the broken tape. In the weeks that followed Paul fluctuated between tears, depression and anger. He constantly requested the video to staff; many attempts were made to repair the tape but they all failed.

If only there were an online website where people could post video clips of their favorite movies much of Paul’s stress would have been avoided? Sadly, Paul’s struggle with the loss of his tape happened about three years before Chad Hurley, Steve Chen, and Jawed Karim registered and introduced YouTube to the world. Had YouTube been available when Paul’s tape fatally snapped, we could have quickly found his favorite episode, where Paul could have been able to watch it over and over.

He could have downloaded it, saved it to the computers desktop for instant access so Igor and McDuckula’s muttered, creepy conversation could just run on and on, with no need for Paul to push another button.

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From my experience in supporting individuals on the spectrum, the YouTube experience has become a very valuable tool. YouTube offers perfect instant reproduction of sounds and images, a rigid law-abiding structure for the hyper-systemising mind to analyze and absorb. But it is very important to realize that the viewer with autism may not be watching videos’, DVD’s or clips on YouTube in the same way that the neurotypical person may watch.

Individuals on the spectrum tend to watch the same episode over and over or in the case of Paul just very small tidbits of the program or movie. There is a wealth of research both anecdotal and clinical that indicates not only a preference in individuals on the spectrum to want visual stimuli, and to have that visual stimuli as it pertains to electronics such as televisions, computers and hand-held tablets.

I had the pleasure of working with Paul again a few years ago and I found him firmly rooted every evening to his computer and to YouTube.

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This time Paul’s particular favorites are the T.V. trailers found at the start of television programs and computer games. With digital technology, Paul could watch these over and over. He appeared to be stimulated by the sound and noises that tended to accompany these motifs.

The YouTube experience for him was a place that was perfect, repetitive, and predictable.

Like television and video games, user generated video sites such as YouTube do have an important place in the lives of individuals on the spectrum. Wired magazine once referred to the short clips found on YouTube as ‘Bite sized bits for high speed munching’, this sums up the behavior of Paul and many other individuals on the spectrum, they are not eating an entire meal, but relentlessly snacking on the same visual tidbits over and over. YouTube with its endless stream of stimulus can become respite for individuals on the spectrum, where they may appear to be entirely at peace with. So, let’s enjoy the experience with them!

ABOUT THE AUTHOR Michael Rimmington, BSc MA is the director of ProACT, an autism training and consultancy firm based in Cheshire, England. He has been supporting people on the autism spectrum for the last ten years.

Michael is currently continuing his post-graduate research by developing a software-based system for predicting cyclic patterns of challenging behavior.

For more information visit: www.cheshire-autism.co.uk info@cheshire-autism.co.uk

References Baron-Cohen, S (2006) The hyper-systemising,

assortative mating theory of autism. Progress in Neuropsychopharmacology and Biological Psychiatry. V(30), pp. 865-872.

Finkenauer, C Pollmann, MMH Begeer, S & Kerkhof, P (2012) A brief report: examining the link between autistic traits and compulsive internet use in a non-clinical sample. Journal of Autism and Developmental Disorders. V(42), pp. 2252-2256.

Miller, N (2007) Manifesto for a new age. Wired magazine. March 2007.

Shane, HC & Albert, PD (2008) Electronic screen media for persons with autism spectrum disorders: results of a survey. Journal of Autism and Developmental Disorders. V(38), pp. 14991508.

Mazurek, MO & Wenstrup, C (2012) Television, video game and social media use among children with ASD and typically developing siblings. Journal of Autism and Developmental Disorders. pp. 1-14.

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