VOLUME 34, NO. 1 • ISSN 1044-1921 • WINTER 2018
Current Crisis Options in NC Annual Conference: Autism + Health A Closer Look at Visual Supports
Mission Statement The Autism Society of North Carolina is committed to providing support and promoting opportunities which enhance the lives of individuals within the autism spectrum and their families.
Vision Statement The Autism Society of North Carolina strives to create a community where people within the autism spectrum and their families receive respect, services, and support based on individual differences, needs, and preferences.
The Spectrum The Spectrum (ISSN 1044-1921) is published in January and August by the Autism Society of North Carolina, Inc. Copyright 2018. All rights reserved. Viewpoints expressed are not necessarily those of the Autism Society of North Carolina, Inc. or its Board of Directors. Editor: Amy Seeley Graphic Designer: Erika Chapman
Table of Contents Features
Learn About “Autism and Health” at 2018 Conference...........4 Current Crisis Options in NC....................................................6 A Closer Look at Visual Supports...........................................10 ABLE Account Limits Increased in NC....................................12 Transitioning to Competent Adulthood with Dr. Gerhardt................................................................... 14 Celebrate Acceptance this April............................................23 Triangle Run/Walk for Autism is a Family Affair....................26
Also in this issue Message from the CEO............................................................ 3 Direct Services......................................................................... 8 Camp Royall........................................................................... 16 Social Recreation in Eastern NC.............................................17
Would you like to work for the Autism Society of North Carolina? ASNC is a direct-supports provider throughout the state with offices in Asheville, Charlotte, Fayetteville, Greensboro, Greenville, and Raleigh. We are always looking for qualified candidates who are passionate about helping individuals on the autism spectrum and their families. A variety of part- and full-time positions are available! Please visit www.autismsociety-nc.org/ careers to learn more about current ASNC career opportunities. We appreciate referrals; please help us recruit the best talent by sharing the above link.
5121 Kingdom Way, Suite 100 Raleigh, NC 27607 919-743-0204 • 800-442-2762 • Fax: 919-882-8661
Chapters & Support Groups..................................................18 Hispanic Affairs...................................................................... 20 Fundraisers & Events............................................................. 24 Donations.............................................................................. 29 Call on Us............................................................................... 31
ASNC is also supported by:
Message from the CEO
2017 was a remarkably productive year for the Autism Society of North Carolina. We spent countless hours working to improve the lives of individuals with autism, support their families, and educate our communities. Our vision to create communities throughout the state in which people on the autism spectrum and their families are empowered, supported, and fully embraced is always top of mind. Last year, we also approved a strategic plan that will direct the organization through 2020. Rather than focusing on our accomplishments from the past year, I’d like to look ahead at some critical issues that will affect our community. While our strategic plan sets many goals related to advocacy, training and education, and providing direct supports, two things that are of the utmost importance are the Medicaid transformation within North Carolina and any federal health-care changes that affect how Medicaid is funded. These items have our utmost attention. Currently, the NC Department of Health and Human Services (NC DHHS) is seeking commercial carriers to manage the full Medicaid system in North Carolina. Simultaneously, NC DHHS has submitted an application to the Centers for Medicare and Medicaid Services to approve an 1115 Waiver, which will allow NC DHHS to move Medicaid to a fully managed-care system that will consider the whole person, to include physical and behavioral health needs. While whole-person care certainly has benefits, this is a significant change. We all know that with change is opportunity, but we are concerned for those being served in the current system, the transition itself, and how services will look under a new system. As you are aware, Congress made significant efforts this past year for health-care reform, which included substantial changes that would reduce the funding of Medicaid, the lifeline of individuals with I/DD. While those efforts were not successful, reductions and limitations to Medicaid could still occur in the upcoming budgeting process. Please know that in both cases, ASNC is advocating to ensure that both North Carolina and the federal government have a high quality continuum of services and supports for individuals on the autism spectrum and their families across the lifespan, with a focus on community settings and ensuring that people with Autism Spectrum Disorder achieve a good quality of life. In looking at these issues, what strikes me is that yet again, there is not enough focus on the most critical element of success for our loved ones on the spectrum: trained and dedicated Direct Support Professionals (DSPs) who provide crucial support and opportunities for individuals with autism. Having served as a DSP many, many years ago, I personally know the challenges, but more importantly, the reward of the service. I think it is fitting to start off the new year by giving these folks a “shout out” for all their care, compassion, and dedication and focusing some attention on their work. To that end, each September, ASNC celebrates Direct Support Professionals Recognition Week and names a winner of the John and Claudia Roman Direct Service Award. This year’s winner, Ed McCrimmon, was a beloved staff member for the Autism Society of North Carolina since 1999, who dedicated his life to helping improve the lives of individuals with autism. Ed always went above and beyond what was expected of him. Tragically, he died shortly after winning the award.
Board of Directors Executive Committee Chair Elizabeth Phillippi Vice Chair Ruth Hurst, Ph.D. Secretary John Townson Treasurer Chris Whitfield Immediate Past Chair Sharon Jeffries-Jones
Directors Rob Christian, M.D. Latonya Croney Ray Evernham Mark Gosnell Barbara Haight Steven Jones Michael Reichel, M.D. Scott Taylor Dana Williams Jeff Woodlief Doug Brown (Community Representative)
We want to keep Ed’s memory alive, and at the same time, celebrate others like him who give their heart and soul in providing critical care to individuals with autism. Thank you, Ed, and thank you to all the other DSPs at ASNC and other providers across the country. Wishing you all a very prosperous 2018!
Tracey Sheriff, Chief Executive Officer www.autismsociety-nc.org • 3
Learn About “Autism + Health” at 2018 Conference
Register today! www.autismsociety-nc.org/conference
We invite you to join nearly 800 parents, self-advocates, and professionals March 23-24 in Charlotte for the Autism Society of North Carolina’s annual educational conference. The 2018 theme, “Autism and Health: What You Need to Know,” reflects ASNC’s goal to provide information and strategies that help individuals on the autism spectrum, their families, caregivers, and professionals improve understanding of factors that affect health and people’s quality of life. This year’s sessions will address improving communication across the spectrum, medical issues and autism, teaching healthy habits, transition and employment, and behavior issues. Finally, a panel of adults with autism will share their insights about how to help your loved one. “Health is an important topic within our community,” said Dr. Alexander (Aleck) Myers, ASNC Clinical Director and leader of the conference planning committee. “The 2018 conference will help you understand autism and health in a new way and leave with the tools you need to be a better caregiver, teacher, or provider. “One thing that improves care is communication, and our speakers will share strategies to improve functional communication in verbal and nonverbal individuals with autism. On Friday, we are pleased to have Dr. Kathy Quill, director of the Autism Institute and author of the book ‘DO-WATCH-LISTEN-SAY: Social and Communication Intervention for Autism Spectrum Disorder,’ and Eve Megargel, a mother of a young nonverbal adult and author of ‘Learning to Kiss.’ On Saturday, Tracy Vail, SLP, will specifically address communication for persons on the spectrum who are nonverbal. Dr. Quill, Ms. Megargel, and Ms. Vail will provide strategies to enhance communication in practical and implementable ways. By improving communication, you can reduce anxiety, sensory issues, and behaviors, and of course, improve quality of life!” Dr. Myers said. “On Saturday, we’ll address a wide range of topics of interest, and we are very excited to have for the first time a panel of autism self-advocates to share their perspectives and advice for parents and professionals.” 4 • The Spectrum, Winter 2018
Friday Sessions On Friday, March 23, the conference will begin with a presentation by Quill based on her best-selling book. She will review social and communication challenges for individuals on the spectrum and provide strategies and evidencebased practices to promote meaningful progress. In the afternoon, Megargel will share the story of how her son used alternative communication strategies to overcome serious health issues often associated with a diagnosis of ASD. She created a communications tool that has been replicated in several hospitals and health-care settings. Her son has become an accomplished artist, yogi, and inspiration for others. The conference exhibit hall will be open Friday from 7:30 a.m. to 5 p.m. with more than 30 organizations, service providers, and product tables as well as the ASNC Bookstore and ASNC information section.
Saturday: Choose Your Sessions Saturday will feature two keynote addresses and two sets of concurrent sessions. Attendees will be together for the opening and closing sessions and will choose between concurrent workshops in the middle of the day. The day begins with a keynote on “Pros and Cons of Medication Usage with Individuals with Autism Spectrum Disorder” by Dr. Rob Christian. Dr. Christian is an Assistant Professor of Psychiatry and Pediatrics at the Carolina Institute for Developmental Disabilities. He has been a leader in the effort to develop treatment programs that look at all aspects of an individual’s health and diagnosis.
The first group of concurrent workshops are: “Improving Communication in Nonverbal Individuals with Autism”: Tracy Vail, SLP, is the owner of Let’s Talk Speech and Language Services, Inc. She has extensive training in evidencebased autism treatment methods and has worked with individuals on the spectrum throughout her professional career, including in her practice and through training and consultations around the country.
“Teaching Healthy Habits”: Mindy Govan is Director of the IGNITE program in Davidson and Alicia DiDomizio is the IGNITE Assistant Director. Govan is a former TEACCH Autism Specialist and has extensive experience in implementing programs that improve the physical, emotional, and mental health of individuals with autism. She and DiDomizio will share practical ways for attendees to incorporate healthy habits at home, school, and work.
After lunch, our concurrent sessions will examine effective interventions and treatments and how autism affects family dynamics. “Behavior Panel”: A team of clinical experts led by Dr. Myers and ASNC Director of Family Support Kim Tizzard will provide an overview of behavior issues in autism and effective, evidencebased intervention options. The panel will then answer questions from attendees.
“Transition and Employment”: John Thomas, private autism consultant and former Autism Specialist at the NC Department of Instruction, will share valuable insights to help caregivers and professionals understand transitions and how to plan for them. He will also share resources and curricula that will help students be prepared for community and work environments.
The final keynote session will feature a panel of autism self-advocates. They will share their personal journeys and thoughts on what parents, caregivers, and professionals need to know and consider to help each individual with autism reach their potential. Saturday’s exhibit hall hours will be 7:30 a.m.-3:45 p.m. g
Save with the Early-Bird Rate and New App
Past conferences have sold out, so we encourage you to register early! We offer two ways to save this year. When you register, if you choose to receive your handouts through the conference app (a free download), you will save $10. With the app, you will not receive printed handouts but will have PDFs and links to all vendors and other attendees who choose to use the app. You can also save by registering by February 18. www.autismsociety-nc.org/conference
Take $10 off when you choose to use the app! General one day..........$140 two days........$255
Individual w/ASD one day............$95 two days........$165
College student one day..........$120 two days........$210
Registration includes access to lectures and the exhibit hall, conference program and handouts (printed or on the app), continental breakfast, lunch, and break refreshments.
Discounted Hotel Rooms & CEUs
Conference attendees can reserve a room at the Hilton Charlotte University Place for a significantly discounted rate of $100 per night by March 2. Rates are discounted for Thursday-Sunday evenings. We will offer Continuing Education Units; visit www.autismsocietync.org/conference for updates on number of hours and types of CEUs.
Financial Assistance ASNC recommends two sources of financial assistance: Jean Wolff-Rossi Fund for Participant Involvement from the NC Council on Developmental Disabilities: This fund reimburses individuals with an intellectual or other developmental disability (I/DD) and parents, family members, or guardians of a child with
I/DD or at risk of I/DD. It will pay for portions of costs associated with registration, child care, personal assistance, lodging, and transportation. To apply, contact the council at www.nccdd.org or 919-850-2901. Funding is limited to $600 per year for in-state events per individual applicant. CAP/Innovations Waiver Funding: Innovations waiver recipients and their natural supports system (family, caregivers, etc.) are eligible for funding assistance to attend the conference. Contact your care coordinator at your managed-care organization (MCO) and let them know that you wish to use Natural Supports Education funds. There is an annual limit of $1,000 for conference expenses. Please note that family members who are employed/paid as caregivers cannot use these funds. A completed registration form may be required by your MCO. Download the form at www.autismsociety-nc.org/conference.
Exhibits & Sponsors We are pleased to announce that SpecialCare Mass Mutual (formerly the MetLife Center for Special Needs Planning) will return as primary sponsor for the conference. Business owners or organizations that serve the autism community may participate in the conference as sponsors or exhibitors; please contact David Laxton at firstname.lastname@example.org or 919-865-5063 to learn more.
www.autismsociety-nc.org • 5
Current Crisis Options in North Carolina
By Jennifer Mahan, Director of Public Policy & Kerri Erb, Chief Program Officer
Imagine yourself in this situation: Your child’s behaviors have become increasingly difficult to manage. They have hurt themselves and maybe others. You’ve tried to get help from your insurance plan or from state health services and schools, but your child doesn’t seem to qualify for help. After an outburst directly related to their Autism Spectrum Disorder, your child is suspended from school, in trouble, and you are in an emergency room. Or this: You are a young adult on the spectrum, you are unemployed, again, and have now lost your place to live. You tried staying in a shelter, but the people, the noise, the conditions were overwhelming. You don’t know where to turn. These are just a few of the situations faced by children and adults on the spectrum in North Carolina this year. From November 2016 to November 2017, ASNC Autism Resource Specialists assisted families and individuals with more than 400 crisis episodes. Over the past 6 years, that number was more than 2,000. Crisis is experienced across the lifespan – we assisted people in crisis from ages 3 to 70 – and across the spectrum. In our work to support and empower people to advocate for themselves during times of crisis, we see recurring themes: • People who would do well with community-based supportive services, but lack access because of the limited investment in public special education, Medicaid waivers, other federal and state-funded disability services, supportive housing, or flexibility in services delivered under traditional health-care coverage • Insufficient number of programs with staff who are using or are knowledgeable about evidence-based practices for Autism Spectrum Disorder, including schools, hospitals, and other service providers that understand individuals’ potential for learning and growth as well as the core deficits in communication; social understanding; repetitive, narrow or challenging behaviors; and in some cases, cognitive difficulties or learning disorders
• Lack of understanding by families, individuals, and professionals about how the system works and where to go for help • Multiple visits to emergency departments, hospitals, and placements out of the home that are only marginally successful in stabilization, not changes in behavior because no follow-up or long-term services were available • A focus on punishment, suspensions, or legal system intervention rather than evidence-based services and behavioral intervention, or misunderstanding of regulations, leading to refusal to serve • And, in some cases, abuse or illegal actions that needed to be reported and investigated
• Limited specialty crisis services that are not widely available across the state
What has North Carolina Done to Address Crisis Situations? • NC DHHS has established a crisis taskforce to bring together stakeholders to make ongoing recommendations for improvements to the crisis services system. Learn more about the NC Crisis Solutions Collaborative at http://crisissolutionsnc.org/.
developmental disabilities in addition to people with mental illness and addiction-related crisis. These will begin opening in the spring of 2018 through the spring of 2019. In addition, local LME/MCOs worked toward START expansion and other crisis initiatives that are currently in process.
• The NC General Assembly, in conjunction with the NC Department of Health and Human Services (DHHS) and the LME/MCOs, funded NC START, a crisis prevention and intervention program specifically for those with developmental disabilities. For the past eight years, START has successfully worked with adults; last year, START was funded to begin working with children ages 6 to 18. NC START has prevented many emergency room stays.
• North Carolina’s publicly funded health-care system supports mobile crisis units, private and public psychiatric beds, and developmental disability-specific programs at Murdoch such as TRACKS and PATH for longer term, facility-based respite and behavior intervention.
• Partly because of recommendations from the above and other task force groups, the NC General Assembly last year funded adult and child facility-based crisis centers, which are supposed to serve individuals with intellectual and/or 6 • The Spectrum, Winter 2018
• The NC General Assembly and NC DHHS have long supported programs such as ASNC’s Autism Resource Specialists, familypeer support programs, professional and family education, law-enforcement training, respite services, social recreation programs, and other services to support families in crisis, as well as in the longer term.
While all of these services can help those in crisis, the ones that specifically address the unique challenges of meeting the needs of those on the autism spectrum all have waiting lists. Long-term, community-based services also have financial challenges in staffing those with intense needs, and crisis services have few resources to prevent crisis from happening in the first place. In collaboration with DHHS, LME/MCOs, local collaboratives, and providers of crisis services, ASNC continues to bring awareness to the unique needs of individuals on the autism spectrum in crisis scenarios. By ensuring early and ongoing intervention and support, often crisis can be prevented.
What is Needed to Address and Prevent Crises? Individuals with autism in North Carolina need community-based, long-term services and integrated special-education supports. Many people in crisis lack longer term services and behavior interventions that would prevent the cycle of suspensions, self-harm, elopement, emergency-room visits, etc. that our staff see when helping individuals and families in crisis. North Carolina has 10,000 people on waitlists for community-based Innovations waiver and other services. People may be released from hospital stays without ongoing services because of lack of community services and/or lack of health-care coverage that covers autism-related care. Some of those who have services cannot maintain adequate staffing because rates for direct one-on-one care and skill-building have not been increased for a decade. And school special-education programs are chronically underfunded, which, despite legal requirements to provide supports under IDEA, means they must ration specialty services. 1. Crisis services that are specific to autism and other developmental disabilities: Some of these services are available now, such as START and Murdochâ€™s specialty programs, but are not adequately funded to meet the demand or their mission to prevent crisis. More programs are needed with staff and settings that can work with those on the autism spectrum across the state so that crisis services are closer to the home communities where individuals on the spectrum will get longterm supports. Crisis services must be able to address crisis prevention AND intervention for children and adults. 2. System-wide training on autism and autism best practices for staff in schools; health-care providers, including mental health; hospitals; departments of social services; and law enforcement.
Our Work to Address Crisis The Autism Society of North Carolina works with families and individuals in crisis to provide emotional and social support, help with navigating services systems, individual advocacy, information and referrals, as well as an array of professionally informed and guided services and support. ASNC has long advocated for more funding to support system changes across the state to ensure that available resources are well-managed and meaningful and for funding to ensure that current community programs that use evidence-based practices can continue to work toward positive outcomes. ASNC also encourages all NC residents to advocate with elected officials for better supports and services. If you or a loved one find yourself in need of support in a time of crisis, please contact one of our Autism Resource Specialists. They can provide guidance and support as you navigate services systems. They can also connect you with ASNC supports, including the Clinical Department, support groups, and specialized programs such as camps, afterschool programs, and respite. Find contact information for your local Autism Resource Specialist at www.autismsociety-nc. org/resourcespecialists or call 800-442-2762. g
3. Comprehensive, multi-system case management: This is especially important for families in crisis that have multiple systems to interact with including insurance, managed care, providers, DSS, the legal system, and schools. Care managers and health-care coordinators are not able to address the many systems that must support the individual and the family, and must all work together to find solutions. 4. Family and individual peer support: The lived experience of other families and individuals is invaluable to those going through crisis. Those in support positions need training and support themselves to be able to work with others.
We can help in times of crisis The Autism Society of North Carolina is here for you in times of need. Here is one example of how we can help.
This past year, our Autism Resource Specialists received a call about a single mother whose 4-year-old son had been in the emergency room for two weeks. He was waiting for a therapeutic bed in the local hospital. One of the Autism Resource Specialists worked with the local MCO to get the child placed. When he was released from the hospital, the mother asked for support to help her son in his transition back to school. The Autism Resource Specialist taught her to become her sonâ€™s best advocate and connected her to additional ASNC and community services.
The child is now engaged in a successful behavior program at home and at school, and the mother has been able to pursue her career again. She said the support and understanding from ASNC staff was life-changing. www.autismsociety-nc.org â€˘ 7
Honoring Autism Support Professionals Direct Support Professionals Improve Lives
Each September, ASNC celebrates the Direct Support Professionals who provide crucial support and opportunities for individuals with autism. Every day, they work one-on-one with individuals with autism, teaching skill acquisition and supporting them in reaching their life goals. Many become trusted friends, natural supports, and honorary members of families. The Autism Society of North Carolina employs hundreds of Autism Support Professionals; without their dedication and continued efforts, many individuals on the autism spectrum and their families would not have needed support services. Some come to work for ASNC for a few months, others stay for a lifetime. Autism Support Professionals are the largest percentage of ASNC’s employees, and we learn how to improve what we do as an organization and as a system from them. Many full-time ASNC employees and managers got their start in the field through direct support work. During our celebration of Direct Support Professional Recognition Week, our regional services offices found large and small ways to thank these important people for their dedication, including goody bags, awards, and parties. You also might have seen ASNC’s social media campaign using the hashtag #DSPsImproveLives. We hope you will join this campaign in coming years and help us applaud the individuals who are so important to the autism community!
In Memoriam: Ed McCrimmon Ed McCrimmon was a beloved staff member for the Autism Society of North Carolina since 1999 who dedicated his life to helping improve the lives of individuals with autism. Those who worked with him describe him as funny, happy, kind, selfless, and thoughtful. Ed always went above and beyond what was expected of him. In September, Ed was awarded the 2017 John and Claudia Roman Direct Service Award for outstanding commitment to individuals with autism and their families. Tragically, he died shortly thereafter.
2017 John and Claudia Roman Direct Service Award winner for outstanding commitment to individuals with autism and their families 8 • The Spectrum, Winter 2018
Ed was an “even-tempered, soft-spoken gentleman” who was never thrown off by anything, wrote Alice and Pierre Wertheimer in their Roman Award nomination. Ed supported their son, David, for 18 years through many transitions from middle to high school to living independently. He and David had a magical connection built on comfort, joy, and trust, they wrote.
“Ed stayed by David’s side through a medical crisis in 2008 that required serious surgery and lengthy hospitalization – the stuff of nightmares for parents of children with autism,” they wrote. “We are convinced that Ed’s consistent presence and his unique ability to ground David was a significant factor in David’s healing.” The Autism Society of North Carolina joins David’s family in our gratitude for Ed’s passion, dedication, and legacy of faithful service.
New Associate Director of Services We are excited to introduce Jaime Marcum as the new Associate Director of Services. Jaime comes to us with a wealth of knowledge and experience. Over the past 15+ years, she has served in a wide variety of roles, including Early Intervention Specialist, Regional Director/Program Director for IDD Targeted Case Management, and most recently, IDD Care Coordination Manager. Jaime’s passion for working with individuals with autism and other developmental disabilities is displayed on a daily basis. She has a strong belief in providing the support that individuals need to remain in their own homes and communities, with their friends and loved ones. To that end, she has a special interest in promoting the use of assistive technology and durable medical equipment and has obtained an Assistive Technology Certification from ECU. Jaime serves on a variety of committees and has a great working relationship with external stakeholders, MCOs, and other provider agencies. The focus of her role will be to work closely with the Director of Services to provide additional support to all of the regional services staff. This work will include developing a comprehensive training curriculum for all of our para-professional and professional level staff, working to further enhance the quality of services and the satisfaction of individuals with their services. Jaime also has a strong belief in supporting the professionals responsible for providing and overseeing service implementation; she recognizes the fact that without those individuals, ASNC would not be as strong as it is today and would not be able to continue to grow in the future. Jaime’s primary office will be in Greenville, but she will be traveling to all locations to carry out her responsibilities. g
Improve a life –– and yours! Do you know someone who is passionate about helping individuals on the autism spectrum and their families? Let them know that the Autism Society of North Carolina is always looking for qualified candidates to join us as we improve lives. Why work for ASNC? We offer: • Extensive training and education • Full- and part-time positions across the state • Flexible hours and customized schedules • Competitive pay • Benefits starting at 20 hours • Extensive client matching to ensure good fit • Rewarding and relevant job experience We are always looking for candidates or referrals for the following positions: • Autism Support Professionals • Vocational Support Professionals • Autism Services Coordinators • Social Recreation Counselors • Behavior Technicians
A Closer Look at Visual Supports
By Victoria Martin, MA, BCBA, Clinical Professional
As the saying goes, “If you’ve met one person with autism, you’ve met one person with autism.” And while each individual on the spectrum has their own unique strengths, weaknesses, personality, and interests, three core areas of difficulty unite those with Autism Spectrum Disorder: communication, social interaction and relationships, and patterns of narrow interest, rigidity, or repetitive behaviors. Additionally, many individuals with ASD are better able to process information visually, rather than through spoken communication. Visual schedules often come to mind as the primary visual tool that individuals with ASD use. And while visual schedules are an excellent and evidence-based tool to communicate daily activities and improve transitions, the utility of visual supports for individuals on the autism spectrum does not end there! In fact, the effectiveness of visual supports extends itself to skill-building across all of the core deficits of autism and for people throughout their lifetimes.
What are Visual Supports? Visual supports include any physical tool used as a cue to help individuals understand expectations, rules, and information. The many formats a visual support may take are as diverse as the individuals who use them and may include physical objects, photos, icons, lists, and calendars. Visual supports may be fixed to a certain location or portable across settings. They can serve many purposes, including to teach a skill, describe expectations, signal the order of events, indicate the availability of an item or activity, or display the duration of an activity, just to name a few! Other examples of visual supports we frequently rely on in daily life include to-do lists, stoplights, and grocery aisle signs. These visuals capture our attention and make information easier to access and understand.
Who Can Use Visuals? When used consistently, visual supports can be a helpful and familiar tool for navigating challenging situations and promoting self-confidence and independence. Visual supports are effective for individuals all along the autism spectrum, across all skill sets and age groups. While visual supports in young children are often created to contain basic information via objects or icon images, the format of visual supports should evolve throughout the lifetime to provide information that matches the individuals’ current skills and needs. Additionally, parents, teachers, supervisors, and others involved in the person’s life can also use visual supports to communicate with the individual.
Why Use Visuals? Do you use an electronic or paper-based agenda to track upcoming activities and appointments? Do you create to-do lists to organize yourself around daily activities and more complex projects? Don’t we all use visual instructions to assist us in preparing a recipe or putting furniture together, for example? In fact, everyone benefits 10 • The Spectrum, Winter 2018
from visual strategies to complete tasks with independence, accuracy, and efficiency. For many people on the spectrum, visuals can also be beneficial in navigating the world, expectations, routines, and new situations. They minimize unpredictability and clarify what to expect. Visuals can promote flexibility and generalization of skills across settings. Most importantly, visuals foster responsibility, independence, and self-confidence by setting individuals up for success.
Creating Effective Visuals There are several key considerations in determining the types of visual supports that may be most beneficial to someone. First, consider the learning strengths and needs of the person using the visual. For example, an object-based visual support, such as the use of a “First, Then” board with a pencil placed in the first box and a toy train placed in the second box may be appropriate to signal “written work, then play time,” to an early learner or a learner who does not understand and respond to written or picture-based information. In addition, some learners with limited reading skills respond best to concrete photos instead of line drawings and icons. On the other hand, a dry erase board, day planner, or time-management phone app may be an appropriate support for a young adult with strong reading skills. Another important variable to consider is the appropriateness of the visual to the task, time of day, or skill that the visual is meant to assist with. For example, a visual may be used to teach a person how to perform a multi-step activity, such as washing hands. Others may benefit from an activity-based visual that supports them through a specific social situation, such as checking out at the grocery store. For visual schedules used to communicate a daily routine, it is important to consider whether the schedule will be
for a portion of the day or the full day. Additional visuals can be developed for situations that are unfamiliar or challenging. Lastly, visual supports should be individualized and tailored to a person’s preferences. Visuals should include preferred colors, characters, formats, and features whenever possible. It is important that the individual is motivated to interact with the visual for it to be effective. In addition to consistent teaching, the use of preferred qualities can make the visual more meaningful for the person. For example, carefully consider how the individual will respond to Velcro, dry erase markers, technological interfaces, embedded images of highly preferred characters or themes, small and discrete tools versus larger displays, etc. Solicit input from the individual whenever feasible. All of these are important factors in the creation of effective visual supports.
Getting Creative with Visuals Visual supports can be adapted, created, and tailored to fit the unique needs of an individual and challenges of different environments. It’s important to remember that visual supports are a broad set of tools to teach a wide variety of skills, rather than a single strategy for a specific situation. Here are just a few ideas for areas in which visual supports can be beneficial: • Functional communication: To communicate a simple response. Examples: A Break Card, Stop Sign, “I want a break” card • Token board: To signal earning reinforcement. Examples: Personalized tokens featuring preferred characters or shaped like a preferred item such as a train, or play money
• Emotional regulation: Teaching emotional regulation skills such as labeling emotions of self and others, and communicating emotions. Example: Emotional thermometer to label experience of emotions in self and others
• Teaching multi-step skills: Teaching a skill that requires a series of steps to be followed in order. Example: A step-by-step visual of how to prepare a preferred food with pictures and/or words
• Signal availability: Using visuals to signal when an item or activity is available. Example: Placing a red circle on student’s desk when teacher help is not available and a green circle on student’s desk when they are allowed to ask for and receive teacher help
• Teaching abstract concepts: Teaching ideas that are not visual or concrete. Example: Teaching back-and-forth conversation with a write-in topic at the top, followed by numbers 1, 2, 3, 4 to be checked off after each conversation exchange
• Social scripts: A written or pictorial representation of appropriate social statements or behaviors. Example: A small script a person may carry in their pocket with a list of appropriate greetings they may direct at others while in the community
• Embedding visuals into tasks: Using preferred visuals as a part of the task. Example: Teaching unzipping using a jacket on a table with a picture of a preferred character that is revealed when the zipper is undone
• Visual timers: To signal activity length or delay to activity. Example: A visual segmented timer that changes colors as time waiting at the doctor’s office lapses
• Discrimination: Teaching where/when/with whom to use a skill. Example: Picture labels on each drawer of a dresser to signal what type of clothing belongs in each drawer • Choice: Providing options by making clear what choices are available. Examples: A choice board with wrappers of all foods available for a snack or a written menu of all meals a person has a choice of preparing
• Visual list of expectations: To teach expectations during certain situations. Example: Visual checklist of behaviors included in “Being a good sport,” such as congratulating the winner, using calm words, and using materials appropriately • And many more!
Remember, as new or challenging situations arise, the addition of a visual support can assist with skill-building in the individual’s areas of need. There are unlimited situations in which visual strategies can assist an individual in becoming more effective and confident in their environment. g ASNC’s Clinical Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential and other community-based contexts. We also deliver workshops to professionals on a wide range of topics including but not limited to, strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and evidence-based practices in instruction for K-12 students with autism. To find out more, go online to www.autismsociety-nc.org/clinical or contact us at 919-390-7242 or email@example.com. www.autismsociety-nc.org • 11
ABLE Account Limits Increased By Jennifer Mahan, Director of Public Policy
What is NC ABLE?
In 2014, federal legislation known as the Achieving a Better Life Experience (ABLE) Act was passed by Congress. It allows people with disabilities and their families to set up tax-advantaged savings accounts to set aside money for expenses related to their disability. Funds in these accounts (with some limitations) are NOT looked at when considering eligibility for government benefit programs. Yearly contribution limits have recently increased from $14,000 to $15,000. Please note that funds go into these ABLE accounts after tax but are not taxed when they are withdrawn for disabilityrelated expenses.
Who can sign up? People with “significant disabilities” with an age onset before 26 are eligible to open an account. Individuals already receiving SSI or SSDI are automatically eligible to sign up for an account. Those who have significant disabilities but are not getting Social Security benefits will need to certify their disability to be eligible.
What can the funds be used for? Funds in the accounts can be used for a variety of expenses related to health, independence, and improving the quality of life, including education; health services including prevention, wellness, therapies and disability services; housing and basic living expenses; transportation, adaptive equipment, assistive technology, and related services; financial management services and administrative services; legal fees; and funeral and burial.
Where do I go for more information? Go to NC.SaveWithAble.com for information on how to set up an account in North Carolina. The NC Office of the State Treasurer manages the ABLE account process in NC and contracts with a group of 14 other states and outside vendors to offer investment and checking/debit accounts for ABLE account-holders. See the ABLE National Resource Center at www.ablenrc.org for more information about ABLE eligibility, how accounts can be used, and a comparison of the various ABLE options across the United States. Please note that you do not have to open an account in North Carolina; be a wise consumer and compare your account options before making a decision.
What are some other options? ABLE is not your only choice for setting aside funds for an individual with a disability. Some people may find that special needs trusts or other trusts work better for their financial circumstances. Please contact one of the ASNC Autism Resource Specialists for information about long-term planning and financial advisers in your area. g North Carolina has some complicated guardianship laws, and some people have found that having only “guardianship of the person” and not “guardianship of the estate” may prevent them from opening an ABLE account. Recent changes in NC law have added “parents” to the category of people who may open an ABLE account on behalf of eligible individuals. We recognize that this change will not solve every problem related to opening ABLE accounts for individuals under guardianship. If you have problems opening an ABLE account because of guardianship issues, please let us know by contacting Jennifer Mahan, Director of Public Policy, at 800-442-2762 or firstname.lastname@example.org.
Reliable Resource Are you reading ASNC’s blog regularly? Our Autism Resource Specialists, Clinical team, and Public Policy staff contribute in-depth articles aimed at supporting individuals with autism and their families. Some of our most popular recent posts: • Guardianship: Confessions of a Mother • Navigating Exceptional Children’s • Social Narratives Support Individuals with Autism • Building Communication-Rich Environments: Practical Strategies for Success
www.autismsociety-nc.org/blog 12 • The Spectrum, Winter 2018
Gain Knowledge with ASNC The Autism Society of North Carolina strives to provide families and individuals with the tools they need to lead fulfilling lives.
Free toolkits that can be read online or downloaded and printed
We now offer our most popular webinars on our website so you can watch at your convenience! We will continue to build this library of resources, so check back occasionally.
www.autismsociety-nc.org/toolkits • • • • • • •
Autism and Health Accessing Services The IEP Behavior & the IEP Bullying Residential Options Advocacy 101
www.autismsociety-nc.org/online-webinars • • • • • •
Safety Considerations for Caregivers Residential Options for Adults with Autism Preparing for College Starts at Home Guardianship: What You Need to Know Taking Autism on the Road IEP Basics
Workshops and conferences with our Autism Resource Specialists or Clinical staff will help you learn more about topics that concern you, such as early intervention, IEPs, transitioning, and residential options. www.autismsociety-nc.org/workshops
Transitioning to Competent Adulthood with Dr. Peter Gerhardt Dr. Peter Gerhardt, who has worked in the autism field for 37 years, shared some of his expertise with parents and professionals last fall at a one-day conference in Raleigh. His presentation was titled “Transitioning to Competent Adulthood for Individuals with Autism: Implications from Preschool to High School and Beyond.” Dr. Gerhardt is the Executive Director of the Educational Partnership for Instructing Children (EPIC), a school for individuals with autism that uses Applied Behavior Analysis to teach new skills and increase independence. For those who could not attend his presentation, we are sharing some highlights here. According to a 2015 study titled National Autism Indicators Report: Transition into Young Adulthood, “Young adults with autism have a difficult time following high school for almost any outcome you choose – working, continuing school, living independently, socializing and participating in the community, and staying healthy and safe.” Dr. Gerhardt’s presentation focused on the ways families and professionals can teach skills and provide supports that increase the likelihood of good outcomes in these areas. His key point was that families should always be looking five years ahead, asking themselves where they would like their loved one to be in five years, and teaching them accordingly. Larger goals can be broken into smaller goals, and they must be specific. Everyone is capable of living and working in the community with the proper supports, and no one should have to earn the right to be in the community, Dr. Gerhardt said. If an individual is aggressive in a classroom, that is not a reason to keep him from the community; his behavior may be communicating that he does not want to be in the classroom. But Dr. Gerhardt acknowledged that there are barriers associated with certain social norms to overcome: • High rates of severe challenging behavior can limit community participation. • Poor hygiene and age-inappropriate clothing restricts social inclusion. • Poor eating skills restrict inclusion on many levels. • Inappropriate sexual behavior tends to fall under community zero-tolerance policies • Not being bowel- or urine-trained presents an overall challenge. These factors should all be worked on when children are still young, so they are not an issue by the time the student is 12 and families are ready to create a transition plan, Dr. Gerhardt said. 14 • The Spectrum, Winter 2018
Children with autism often lag behind typical children in skills that may be thought of as chores but actually are the beginning of independence from their parents. For example, when children are 4, they can put out napkins for a meal or put laundry in a hamper. At 10, they can make the bed, vacuum, help wash dishes, and take out the trash. Self-care skills, such as brushing their teeth or showering without prompting, also are important to learn at a young age. Don’t be afraid to let children make mistakes, Dr. Gerhardt said. “We limit people by not thinking they are capable,” he said. “We don’t let them try. The best times of my life were probably the riskiest… Most people on the spectrum don’t get that chance.”
Start with the Outcome Transition plans should be very specific about the expected outcomes for adulthood, Dr. Gerhardt said, listing details on the individual’s type of job, life skills they will have, and how they will spend their leisure time. With the expected outcomes defined, a plan can be created for getting there. Once the environments are named, go into them and think about which skills the individual will need to be successful. First identify critical skills, those that enable individuals to independently complete a variety of relevant tasks and engage in desired activities. They are also skills that are used frequently enough to remain in individuals’ repertoire and can be acquired within a reasonable time frame. For example, for some individuals, learning to drive would take too long, but riding a bus is a critical skill that will enable them to get to a job. Then list skills that reduce the individual’s dependency on others,
keeping in mind that not all parts of a task may be necessary. For example, for grocery shopping, going into the store and paying for items are necessary skills. Getting everything on the list actually isn’t; we all forget things, and we have learned to go back in.
Teaching Critical Skills Start by teaching skills where individuals will be using them; most of their lives will not be in a classroom, Dr. Gerhardt said. In the real world, abstract skills can be made concrete. For example, to teach them to shop in a grocery store, take them to an actual grocery store and have them go through the steps. Of course, the challenge with that is that the world doesn’t work the same way every time, so at first, it is helpful to limit the variables. For example, start by going at a time when the store is not as busy, buying the same item each time, and going to the same cashier. Gradually, variables can be added. Repetitive practice is a key to learning a new skill, and not just for young children, Dr. Gerhardt said. Going out to eat is a rewarding experience, but it has many skills to learn: entering the restaurant, waiting, ordering, and paying. As in the grocery store, we can limit some variables at first, but it may take weeks of daily practice for all of the parts can be learned. Too often we expect success after just a few attempts that are too spread out. Also focus on teaching the easiest, most efficient way to accomplish a task. For example, when teaching them to do laundry, use detergent pods and dryer sheets to eliminate measuring. Keep in mind, your goal is to teach them to do the skill without reminders. Mastery comes when they have control, whether that is with the support of a calendar or a prompt such as a full laundry basket.
Employment Development and Support Dr. Gerhardt said that the potential for an individual with autism to be employed is generally limited more by the lack of imagination on our part than an individual’s skill deficit. Most jobs include about 20 tasks. Having the individual do some of those tasks can
Upcoming clinical workshops Positive Partnerships to Address Challenging Behavior Saturday, Feb. 3, in Morrisville Preventing and Responding to Challenging Behaviors Saturday, May 5, in Lenoir See all workshops at
help others focus on other parts. For people with autism, the job task is usually the easiest part of employment, yet in most cases, that is a focus of their teaching. Instead, focus on the social and navigation components of job training and support, because those are usually the reasons they lose jobs. Spending time on job matching, or making sure the job is a good fit for the individual, ensures success. Make sure it fits them in terms of challenge, interest, comfort, camaraderie, status, hours, pay, and benefits. Job sampling is also a good idea, and don’t be discouraged if the first job doesn’t work out. Individuals with autism are reliable, dedicated, focused, attentive to detail, and hard-working, and promoting their competence over their disability will inspire employers, Dr. Gerhardt said. Finally, be willing to allow the individual to change jobs – people with autism can become bored just as anyone else might after a long period in the same job.
Aim for Quality of Life A person’s quality of life is determined by their amount of satisfaction with their physical well-being, emotional well-being, interpersonal relations, social inclusion, personal growth, material well-being, self-determination, and individual rights, Dr. Gerhardt explained. To help improve quality of life for individuals with autism, we must also build their leisure and social skills, which is more complicated than working on task-oriented skills. But as we plan for an individual’s transition, we must remember to consider happiness as an operational outcome, he said. What are the ultimate goals for the individual? What we do each day affects our happiness the most. Which skills does the individual need to build a fulfilling life? Can the individual use technology to assist with self-management and independence? Thoughtful consideration of these questions, and always looking five years down the road, will help you build a transition plan for your loved one with autism. g For more on Dr. Gerhardt’s presentation, see our blog, at www.autismsociety-nc.org/blog. Dr. Gerhardt has supported individuals with autism in educational, employment, residential, and community settings. He is also the author or co-author of many articles and book chapters on the needs of adolescents and adults with autism and has presented nationally and internationally on this topic. Dr. Gerhardt is the founding chair of the Scientific Council for the Organization for Autism Research and sits on numerous professional advisory boards.
www.autismsociety-nc.org/workshops www.autismsociety-nc.org • 15
Register Now for Summer Camp!
We are excited to start accepting applications for the Summer Residential Camp lottery on January 12! The application period will end February 28. Day Camp registration is first come, first served and opens March 1. Campers can attend multiple weeks of Day Camp. To register and find all of the latest information about our Summer Camp program, including the dates and rates for 2018, please go to www.camproyall.org. If you need assistance with registration or have any questions, please contact us at 919-542-1033 or email@example.com.
Year-Round Programs We love welcoming campers to Camp Royall every day! The yearround programs that we offer continue to grow; we are lucky to make new friends and see old friends returning often. In 2017, we served close to 1,800 individuals and their families at Camp Royall. Our Mini Camp Weekends and Adult Retreats continue to be really well-attended throughout the year, offering regular recreation opportunities for our campers and respite for our families. We have loved seeing our newest program, Teen Tuesday, continue to be popular, bringing teens together to learn life skills in a group setting. In 2017, we enjoyed our second annual week of Spring Camp, our third annual week of Fall Camp, and our ninth installment of Winter Camp! We encourage you to check out all of the happenings throughout the year. Better yet, print a copy of our flyer found at www.autismsociety-nc.org/camp-royall/programs, so you won’t miss anything in 2018! Adult Retreats: Independent adults, 18 or older with high-functioning autism or Asperger’s Syndrome, can spend time with friends enjoying activities at camp and in the community. Four weekend retreats and one week-long retreat will be offered in 2018. Afterschool Program: Monday through Thursday from 2:30 to 6:30 p.m. throughout the school year, our participants take part in outdoor activities, gym play, group games, and more. Transportation options may be available. Family Fun Days: Bring the whole family out to camp for a Saturday afternoon filled with fun, recreation, and leisure activities in a safe and welcoming setting.
16 • The Spectrum, Winter 2018
Family Overnight Camping: Come for the Family Fun Day and stay overnight! Enjoy dinner and a campfire together on Saturday night; breakfast on Sunday is also provided. Mini Camp Weekends: Campers arrive Friday evening and stay through Sunday for a weekend of fun at camp, providing a muchneeded break for both campers and families. Residential Camps: Week-long camps during the spring, fall, and winter breaks from school provide fun and structured activities for campers and a week of respite for families. Teen Tuesday: Our group for teens, ages 13-22 with highfunctioning autism or Asperger’s Syndrome, brings them together to work on life skills in an interactive group setting. The group meets on a Tuesday evening once a month.
Help Send Kids to Camp The Autism Society of North Carolina has been offering camp programs for more than 40 years for individuals with autism of all ages. Camp Royall is the oldest and largest camp exclusively for individuals with autism in the United States. We work year round to raise money to give campers who are unable to afford camp the opportunity to learn new skills, have fun, and make friends. Each year, the demand for scholarships exceeds the funds we have available. We hope you will consider giving to provide life-changing experiences for campers with autism. Please contact Kristy White, Chief Development Officer, at firstname.lastname@example.org or 919-865-5086 if you are interested in donating to camp, learning about named scholarships, or helping with fundraising. We look forward to working with you to help campers across North Carolina. Thank you! g
Social Recreation in Eastern NC
Our Social Recreation programs in Eastern NC expanded greatly over the past year. This summer, we were excited to offer day camps in five Eastern NC locations. Campers ages 4-22 enjoyed swimming, arts and crafts, gym time, and all of the typical camp activities in Winterville, Wilmington, Newport, Brunswick County, and our newest location, Onslow County. We are currently offering Afterschool Programs for children and social programs for adults in Winterville, Wilmington, and Newport as well. The programs are part of an array of Social Recreation programs made possible by funding from Trillium Health Resources. This initiative supports children and adults with autism through programs in underserved areas of the state, helping them to improve their social and communication skills, peer networks, and physical well-being.
“My son made great gains, including creating strong relationships with the counselors and staff and also participating in activities with his peers.” In 2017, our Summer Day Camps served 142 campers from 9 a.m. to 5 p.m. on weekdays with a counselor-to-camper ratio of 1:1 or 1:2 based on self-help and behavioral needs. In the fall of 2017, we provided afterschool programming for 106 school-age children with a 1:2 counselor-to-camper ratio. The programs run from 2:30 to 6:30 each school day, with transportation from schools. Children take part in enriching and engaging activities in an environment that is designed to meet their needs.
We also served 26 adults in our up-and-coming Adult Programs. Our adult programming is in its infancy right now, but we are so excited to be providing opportunities for adults on the spectrum to have a meaningful location to learn social skills, hang out with friends, and so much more. Adults 18 and older can contact our sites directly to learn more about our programs or they can sign up online. We have just begun work on our new group respite programs as well. We will serve children and adults through group respite events, such as a date-night program that will allow parents to drop their kids at our center to be cared for by awesome staff while they have some time together. Registration for these events is available on our registration website. We are also excited to expand our community events, such as holiday parties, so more folks can come enjoy time at our centers.
Summer Camp Registration will open at https://srp.campbrainregistration.com on March 1 for Winterville, Wilmington, Newport, and Brunswick and Onslow counties. For more information, go online to www.autismsociety-nc.org/ socialrecreation or contact the director for your area: Winterville: SRP_Winterville@autismsociety-nc.org Wilmington: SRP_Wilmington@autismsociety-nc.org Brunswick County: SRP_Brunswick@autismsociety-nc.org Newport: SRP_Newport@autismsociety-nc.org Onslow County: SRP_Onslow@autismsociety-nc.org Want to help? If you would like to volunteer or donate items, please contact us. g
www.autismsociety-nc.org • 17
Cold Hands... Warm Hearts
With the arrival of crisp air and chilly winter breezes, ASNC Chapters are once again reveling in all that the season brings – fun with friends old and new, abundant opportunities to learn and share, and the cozy feeling of being supported by others who understand and accept. Many of our families and loved ones with autism are recovering from stress this time of year, brought on by the combination of school, extracurricular activities, and the busyness of the holiday season. That’s where belonging to a Chapter can be especially meaningful. Chapters provide a place for families to share experiences and information, to learn practical solutions for autism-related issues, and to receive support and encouragement from other families facing similar challenges. Oh … and they also have FUN! Take a look at some of the fun, educational, and heart-warming ways Chapters are making a difference in their local communities.
New and Revitalized Chapters Offer Support Around the state, committed parents are stepping up to lead new and revitalized Chapters and bring support and education to families affected by autism. In Macon County, a pastor responded enthusiastically to the need of a parishioner whose son has autism. The Macon County Chapter now meets monthly at Bethel United Methodist Church on Bethel Church Road in Franklin. “Just having those meetings, knowing that you’re not alone, I think, is a huge gift. Especially when you’re struggling, when you’re feeling like you’re the only one who goes through that,” said Pastor Bradley Lisk. Look for other new or revitalized Chapters in Bladen, New Hanover, Rutherford, Henderson, and Cherokee counties, plus the Outer Banks. In Davie and Forsyth counties, the Chapters have combined to form one stronger Chapter and bring more resources to families. For information on how you can become involved with one of these or another Chapter, please visit www.autismsociety-nc.org/chapters.
Surry County Chapter’s Fall Festival More than 125 eager attendees attended this year’s fall festival held by the Surry County Chapter. Entertainment highlights included a cake walk, Go Fish, a duck pond, cornhole, a ring toss, and a lot of other fun games. Participants had their pictures taken and then had fun crafting their own frames as well as festive bracelets. A great time was had by all!
Craven County Chapter’s Resource Fair The Craven County Chapter held a resource fair in November to provide a chance for families to gather information about local organizations and resources for individuals with disabilities. Fourteen organizations, businesses, and agencies participated. The Chapter plans to make the fair an annual event.
Crystal Coast Chapter’s Crazy Corn Fun The Crystal Coast Chapter had a fun day at Garner’s Corn Maze and Pumpkin Patch in October. Rather than their usual Friends & Fun birthday celebration, they spent the day on the hay ride, playing games, and wading in the corn kernel pit. Those with birthdays did not miss out, though; the Chapter still gave out gifts. 18 • The Spectrum, Winter 2018
Mecklenburg County Chapter Golf Fundraiser On a gorgeous Monday in October, The Players Golf Association held its second annual Drive for Autism tournament at Palisades Country Club in Charlotte. Proceeds from this fundraiser benefited the Mecklenburg County Chapter, and members of the Chapter’s Leadership Team were on hand to help with registration and the awards ceremony, and to answer questions about autism.
Sampson County Chapter Barbecue Fundraiser The Sampson County Chapter benefited from the Court Square Barbecue Cookoff in Clinton in October. Smithfield Foods raised about $1,400 in barbecue sales for the Chapter.
High Country Chapter’s Fall Picnic The High Country Chapter enjoyed a family picnic in October in Blowing Rock. “I am so happy to be a part of the ASNC High Country Chapter,” said Jennifer Moore, who has a daughter with autism. “I am hoping to gain support for my family and help spread awareness and acceptance in our community.” The Chapter plans to continue to have monthly social events for its families.
Gaston County Chapter’s Bullying Prevention Workshop For National Bullying Prevention Month in October, the Gaston County Chapter invited Nancy Nestor, Autism Resource Specialist and Regional Chapter Coordinator for the Charlotte area, to their meeting. She discussed bullying and a new Bullying Prevention Program being implemented by Gaston County Schools.
Wake County Chapter Lunch ‘n’ Learns The Wake County Chapter has found great success with monthly lunch ’n’ learn programs. Parents and caregivers are invited to bring their lunch and spend some time learning about a specific topic and discussing it. Recent topics have included the impact of an autism diagnosis on family and relationships, building an inclusive classroom, and strategies for self-care and well-being.
Pender County Chapter’s Rock Painting Party Families of the Pender County Chapter gathered for a fun social event in October. They painted rocks and enjoyed pizza at a local park.
Wayne County Chapter at Touch a Truck Co-leaders Sabrina Shivar and Rachel Radford represented their Chapter at the Wayne County Partnership for Children’s “Touch a Truck” in August. They had a chance to meet families from their local community and share information about the Autism Society of North Carolina’s resources and their Chapter. g For information on how you can become involved with one of our Chapters around the state, please visit www.autismsociety-nc.org/chapters. No chapter in your area? ASNC works with local families to start new groups. Contact Marty Kellogg at email@example.com for more information.
www.autismsociety-nc.org • 19
Recursos para las Familias Hispanas
La Sociedad de Autismo de Carolina del Norte (ASNC) ofrece servicios en español para ayudar a las familias hispanas que han sido afectadas por el autismo. Talleres en Español se ofrecen en todo el estado y tienen como objetivo educar a los padres y los profesionales para desarrollar estrategias útiles en la comunicación, comportamiento, transiciones, recursos y defensa. Para inscribirse, por favor vea el calendario de ASNC en la página web en www.autismsociety-nc.org/calendar.
Próximos talleres: • Autismo y Genética: Raleigh • ¿Qué es el Autismo de Alto Funcionamiento? Wilmington y Durham • ¿Qué es el autismo y cómo puedo ayudar a mi hijo?: Durham, Hillsborough, y Concord
Grupos de Apoyo Hispanos Estos grupos ayudan a los padres a encontrar información sobre los diferentes recursos y tratamientos, así como a compartir sus experiencias personales en su idioma materno y área local. Los grupos también promueven la concientización del autismo en la comunidad hispana. ASNC ofrece Grupos de Apoyo Hispanos en las siguientes áreas: Cumberland/Robeson: Reuniones el último viernes de cada mes, 9:30-11:30 a.m., en la oficina regional de ASNC, 351 Wagoner Drive, Fayetteville. Coordinadora Voluntaria: Alma Morales, 910785-5473
Mecklenburg: Reuniones el segundo jueves de casa mes, 9-11 a.m., en la Iglesia Nuestra Señora de Guadalupe, 6212 Tuckaseegee Road, Charlotte. Coordinadoras Voluntarias: María Laura Torres, 704-430-0281 y Clara Amarante, 347-217-5661
Durham: Reuniones el primer miércoles de cada mes, 11 a.m.-1 p.m., en El Centro Hispano, 2000 Chapel Hill Road, #26-A, Durham. Coordinadoras Voluntarias: Juana García, 919-687-7692; Mayra Tapia, 919-450-6543; y Karen Díaz, 919-641-3718
Pitt: Reuniones el tercer viernes de cada mes, 5-6: 30 p.m., en la Iglesia Saint Gabriel Catholic Church, 3250 Dickinson Ave., Greenville. Coordinadoras Voluntarias: Mary Córdova, 252-2881668, y Amelia Velázquez, 252-217-0111
Guilford: Reuniones el primer miércoles de cada mes, 5:30-8 p.m., en la Iglesia Saint Mary Cathlic’s Church, 812 Duke St., Greensboro. Coordinadora Voluntaria: Xochitl García, 336-253-2482
Vance: Reuniones una vez por cada trimestre en la Iglesia de Los Santos Inocentes, 210 S. Chestnut St., Henderson. Coordinadora Voluntaria: Beatriz Solano, 252-378-4491
Johnston: Reuniones el primer viernes de cada mes, 9-11:00 a.m., en The Partnership for Children of Johnson County, 1406 S. Pollock St., Selma. Coordinadoras Voluntarias: Hilda Munguía, 919-9465080 y Mónica De la Cruz, 919-464-0306
Wake: Reuniones el primer viernes de cada mes, 6-8 p.m., en ASNC Creative Living. 6300 Chapel Hill Road, Suite 230, Raleigh. Coordinadoras Voluntarias: Guadalupe Ortega, 919-247-5760; Becy Velázquez, 919-802-0621; y Ana Chouza 919-244-9633
Si desea obtener más información o asistencia en español, por favor, contactarse con Mariela Maldonado, Enlace de Asuntos Hispanos, a 919-865-5066 ó firstname.lastname@example.org.
Eventos más recientes en la comunidad hispana Carrera/Caminata por el Autismo: Muchos padres y profesionales bilingües participaron en la Carrera/Caminata por el Autismo del Triángulo el 14 de octubre en Raleigh. Asistieron familias de varias regiones, llevando a sus familiares, amigos y compañeros de trabajo para crear concientización sobre el autismo en la comunidad. Nuestro más sincero agradecimiento a la estación de TV hispana Univisión 40, y al periódico Que Pasa Noticias por promocionar el evento en la comunidad hispana. Festival Día de los Muertos en Hendersonville: ASNC participó en este evento tradicional familiar en septiembre auspiciado por El Centro de Hendersonville donde cientos de familias hispanas asistieron desde la zona occidental de Carolina del Norte. UNIRUMBA: ASNC logró concientizar sobre el autismo y proporcionó información de los diferentes recursos sobre autismo en la UNIRUMBA, un evento cultural y musical hispano que se realizó en septiembre en Durham que fue organizado por Univisión 40. La Fiesta Del Pueblo: Miles de familias hispanas participaron en este evento cultural anual en el centro de Raleigh en septiembre. ASNC ofreció concientización sobre el autismo en inglés y español durante el evento que fue auspiciado por una organización hispana, “El Pueblo”. Cumbre de Salud Mental Latina: Gracias a una beca, el personal de ASNC pudo asistir a una conferencia en octubre organizada por “El Futuro”, una organización sin fines de lucro que ofrece servicios de abuso de sustancias y salud mental a las familias latinas en el área central de Carolina del Norte. ASNC tuvo la oportunidad de compartir información sobre los diferentes servicios y conectarse con otros profesionales de otras partes del estado. La conferencia promovió alianzas de investigaciones útiles y educativas para personas y familias de habla hispana sin servicios. Picnic Hispano: Las familias se reunieron para dos picnics de verano este año, uno en Raleigh y el otro en Charlotte. Los participantes llevaron comidas tradicionales de sus países para compartir con familiares y amigos. Los estudiantes universitarios voluntarios ofrecieron cuidado infantil, permitiendo así que las familias tuvieran más tiempo para compartir entre ellos, intercambiar información y apoyarse mutuamente. Los picnics también sirvieron para recaudar fondos que servirán para los costos de eventos, traducciones, becas para la conferencia y talleres para las familias hispanas.
Conferencia Anual del 2018 Esta conferencia, que ofrece servicio de traducción al español, se realizará el 23 y 24 de marzo en el Hilton University Hotel en Charlotte. Para inscribirse en línea y obtener más información, visite www.autismsociety-nc.org/conference. El Departamento Hispano, los Grupos de Apoyo Hispanos, y los Capítulos de ASNC otorgarán becas para ayudar a pagar el costo de inscripción a los padres interesados.
Se necesitan patrocinadores El Departamento Hispano de ASNC recibe con agradecimiento donaciones para proveer educación y a promover oportunidades para las familias hispanas en todo el estado. También, otorga becas para la conferencia anual, así como la traducción de talleres y la conferencia. Si usted quisiera ser uno de nuestros patrocinadores o contribuir a ASNC, por favor comuníquese con Mariela Maldonado, Enlace de Asuntos Hispanos. g www.autismsociety-nc.org • 21
Find the help you need with our online
autismsociety-nc.org/resource-directory Search online for resources that are most often requested by families. ASNC continues to add and update listings. Easy to use! Search by: • Category of service • Keyword • Name of provider agency or program Creation of the Resource Directory was supported in part by the University of North Carolina at Chapel Hill’s Autism Spectrum Disorder State Implementation Grant from the Maternal and Child Health Bureau, U.S. Department of Health and Human Services, and the Medical Homes for People with Intellectual and Developmental Disabilities Initiative of the North Carolina Council on Developmental Disabilities.
Shop the ASNC Bookstore • Largest nonprofit, ASD-specific bookstore in the United States • Hundreds of titles, many exclusive to the ASNC Bookstore • Extensive inventory is priced competitively compared to major online retailers • Proceeds help provide assistance to individuals with autism and their families • We employ individuals on the spectrum Contact the ASNC Bookstore for help in finding resources on a particular topic or in assembling a purchase order.
800-442-2762 | 919-743-0204, ext. 1130 email@example.com | www.autismbookstore.com /AutismBookstore 22 • The Spectrum, Winter 2018
Build the Community You Want this April
Join us this spring as we strive to build acceptance and inclusion for our loved ones with autism in all of our communities. This is a year-round effort for us – and you, we are sure – but National Autism Awareness Month brings more public attention. Let’s take this opportunity to renew our focus and let our communities know what individuals with autism and their families want and need.
A 2 #foA r Autism
We want people to know about autism’s challenges, so they can be more accommodating and provide necessary supports. But we also want them to know how their lives can be better when they include people with autism. We want people with autism, and their families, to feel welcomed in their communities. They deserve the same opportunities as everyone else to reach their goals and dreams.
#A2AforAutism We’ll be spreading this message across our social media channels: Awareness is the first step. Acceptance is the goal. We’ll use the hashtag #A2AforAutism – we want people to move from Awareness “2” Acceptance. We hope you will join our efforts! Share photos of autism awareness events in your schools, houses of worship, and local communities. Snap a pic of your kids playing with their neighborhood friends. Share photos of your loved ones with autism that show off their unique talents. Be sure to include the #A2AforAutism hashtag, so we can see and share your images, too!
Use Our Online Resources Check out our online materials that you can use to raise awareness and increase acceptance in your schools and community organizations. The resources include videos, informational items, ideas for crafts and fundraisers, and book recommendations for all ages from the ASNC Bookstore. These are all free and available at www.autismsociety-nc.org/awareness-acceptance year-round. We hope you will find these helpful as we join together to move our communities from Awareness “2” Acceptance! g
Order Your Gear Now Wear your support with one of our T-shirts at www.autismbookstore. com or put a magnet on your vehicle to spread the message around town. Start a conversation – you never know who might need support or who might have a way to lend a hand, perhaps by hiring someone with autism or holding an awareness event at their school.
Celebrate on April 2 You are invited to our sixth annual World Autism Awareness and Acceptance Day celebration on April 2 at Camp Royall in Moncure, outside Pittsboro. Join us for special activities including bounce houses, outdoor games, hay rides, facepainting, an ice cream truck, and a lunch cookout. You can also check out Camp Royall’s facilities, including the boating pond, the playground, and the zapline. You’ll also have a chance to chat with ASNC staff, including our Autism Resource Specialists. The event is free, but donations will be accepted to help with food costs. Please register online to help us plan: https://waaad2018.eventbrite.com.
A is for...
Autism Ast ute
#fo A2A rA
from aw arenes
s to ac
reness to Accept Awa anc e
#forAA 2A utism
Aut ism Societ a y of North Carolin
www.autismsociety-nc.org • 23
Fundraisers & Events
Run/Walk for Autism Events
Our thanks to everyone who ran, walked, donated, or volunteered to make the fall Run/Walk for Autism events a success! The Run/ Walks provide a day for us all to come together, celebrate our loved ones with autism, and teach our communities about acceptance. Relive those wonderful memories with our photo albums on Flickr: www.flickr.com/photos/autismsocietync/albums.
WNC Run/Walk for Autism More than 300 people and 25 teams joined us for the 12th annual WNC Run/Walk for Autism on Sept. 9. They raised more than $25,000 to support local services in our first year in a new location, Asheville Christian Academy. Team Marlowe Place once again was the top fundraising team, raising close to $2,500, with team member Jesse Wills raising more than $1,900. “Race day is amazing. It is filled with great energy, laughter, and autism love,” said Kristy Barlow, mom to Wyatt, who brings a big team every year. “It touches our hearts to see all our friends and family come together for this event.”
Greensboro Run/Walk for Autism The 8th annual Greensboro Run/Walk for Autism on Sept. 24 raised more than $54,000 for individuals and families affected by autism. More than 600 participants and 48 teams ran, walked, and raised awareness. The Greensboro Run/Walk was also in a new location this year, Jaycee Park. Three area lacrosse teams were our top three fundraising teams: Guilford College men’s lacrosse, High Point University men’s lacrosse, and Guilford College women’s lacrosse. Guilford College men’s lacrosse raised over $5,000 in their second year of participating! “We love to do work with great organizations that are doing good things,” said Coach Tom Carmean.
Triangle Run/Walk for Autism The 19th annual Triangle Run/Walk for Autism brought more than 2,300 participants and 153 teams to the Halifax Mall in downtown Raleigh on Oct. 14. Together, they raised more than $250,000 to improve lives and support families! The new location, with its ample room for the Kids’ Zone and resource fair, was a hit with families, and all were thankful for this year’s mild weather. 24 • The Spectrum, Winter 2018
Walking with Grace had the largest team with 157 members, and Walking with Nolan was the top fundraising team, raising more than $14,000! Josh Hines won a gift card and private shopping party from Raleigh Diamond for raising the most money to improve lives. The Ludwig family has participated in the event since 2009. Mom Kelley Ludwig said she hopes more people will make an effort to understand individuals with autism. “Instead of trying to make children with autism conform to what some call ‘social norms,’ we need to accept and embrace the fact that each child with autism has their own unique-ness about them,” she said. “Autism is just a part of a person, it is not who they are.”
Start Your Teams Now for the 2018 Run/Walks We hope you will join us this year for one of our Run/Walk for Autism events in Asheville, Beaufort, Concord, Greensboro, Greenville, Mount Airy, Raleigh, or Wilmington. You can create a team now and start encouraging friends and family to join you or donate to support your efforts. Go to www.runwalkforautism.com to find the event near you.
Help Us Plan Upcoming Run/Walks Our families, friends, supporters, committees, and volunteers work very hard year-round to make these events successful. We need new committee members to help them continue to grow. For more information, email Shelley Jarman at sjarman@autismsociety-nc. org or call 919-865-5051. All of the proceeds from our fundraisers stay in our state to help North Carolinians affected by autism. Your contribution makes a difference.
Run Sponsors: Many thanks to the following sponsors of our fall Run/Walks for Autism. Please support these businesses and thank them for their support of the Autism Society of North Carolina.
PARTNER Carolina Rehabilitation & Surgical Associates • Carolina Restoration Services • Chick-fil-A Brassfield • Fairway Outdoor Marsh & McLennan Agency • Pediatric Possibilities • Piedmont Local • PPD • Sumus Development Group Triangle Securities Wealth Management • UNC SPARK • VF Corporation • Wake Orthodontics & Pediatric Dentistry • WRAL
ADVOCATE Asbury Associates, LLC • Asheville Pediatric Associates • Biscuitville • Blythe Glover Photography Capital City Chapter of Jack and Jill America, Inc. • Carolina Pediatrics of the Triad, PA • Coastal Carolina Neuropsychiatric Center, PA Cornerstone Physical Therapy • David Allen Company • Fleet Feet • Graham Family Foundation • Greensboro Jaycees Integrated Speech Therapy • Kohl’s • NAI Carolantic Realty • NC ABLE Program • News & Record • P.O.W.E.R. of Play Foundation Raleigh Neurology Associates • Raleigh Pediatric Dentistry • Ross Photography • Special Treats • Spyglass Promotions The Hop Ice Cream Café • The Pediatric Express • Walmart #2414 • Zachary Feldman, M.D.
FRIENDS BCPS • Lionheart Academy of the Triad • Macon Martial Arts • Pepsi • PorterHouse Bar & Grill
www.autismsociety-nc.org • 25
Triangle Run/Walk for Autism is a Family Affair
For the Ludwig family of Holly Springs, autism awareness is a family affair. Mason Ludwig, who was diagnosed with autism when he was 3, is now an “active 11-year-old who loves YouTube, French fries, Mickey Mouse, and most of all, his family!” said his mother, Kelley Ludwig.
about $10,000 to help the Autism Society of North Carolina (ASNC) improve the lives of individuals with autism and their families.
“Mason’s brothers are both amazing advocates for spreading awareness and, most of all, kindness to those with autism,” Kelley said. “Our family chooses to open a door into our lives to help others, educate, and build awareness and acceptance for all children and adults living with autism.”
The Ludwig family thinks it is important to support ASNC because the organization provides caring and knowledgeable staff as well as resources for people affected by autism, Kelley said. “They are there for families as our children grow and new challenges arise.”
Mason’s oldest brother, Austin, attends UNC-Chapel Hill and has organized the Chipping in for Autism golf tournament in the Triangle for the past three years, raising awareness and donating more than $11,000 to the Autism Society of North Carolina. The event also helps support a buddy program in Mason’s school, Lincoln Heights Elementary in Fuquay-Varina. “Mason is my motivation for a lot of things I do,” Austin said. “He’s an incredible kid, super happy all the time.” Mason’s other brother, Carson, played football for Middle Creek High School in Apex. Mason worked with the team for the past two years, carefully lining up bananas and handing them to the players on the day before games. “Sometimes he even replies to their thanks by signing ‘you’re welcome’,” Kelley said. “I am so thankful for this opportunity for him, because it puts all of these social skills that he is learning in school and at home to the test.” Together, the family has been raising awareness by participating in the Triangle Run/Walk for Autism since 2009. Back then, their Run/Walk team consisted of supportive neighbors and family, but over the years they’ve been joined by Mason’s teachers, caregivers, the Middle Creek Mustang football team, and Austin’s Sigma Chi fraternity brothers. This year, relatives from as far away as Arizona and Florida joined them in downtown Raleigh on Oct. 14 for the event. All told, the Pacin’ for Mason team has raised
Mason’s biggest challenge is with communication. “He has speech apraxia as well as autism, which makes it a challenge for all of us, his teachers, and caregivers, to know exactly where he is academically, what he comprehends, and what his wants and needs are,” his mother said. “Especially when he is sick or hurt. It’s so hard to know how to help him when we cannot tell if he’s not feeling well.” To help him communicate, Mason uses an app. “His favorite button to push is ‘I want to go for a ride to eat Chick-fil-A!’” Kelley said. He also communicates through the shows and movies he loves. “Once our family was looking out our window watching a winter snowfall – which was new to us coming from Florida – and Mason put on a movie and found the exact scene where Minnie says, ‘Look at all that snow outside!’ We all looked at each other in shock!” “So we know he understands all the conversations surrounding him,” she said. Kelley said she hopes more people will make an effort to understand individuals with autism. “Instead of trying to make children with autism conform to what some call ‘social norms,’ we need to accept and embrace the fact that each child with autism has their own unique-ness about them, and they can express their love, thoughts, and feeling in a grand way,” she said. “Autism is just a part of a person, it is not who they are. Mason is much more than a diagnosis, he is a blessing!” Participating in the Triangle Run/Walk for Autism makes the Ludwig family feel that they are spreading that message, Kelley said. “That day means so much to because we are surrounded by friends and family who support our family and spreading awareness, acceptance, and kindness to those of us who face some of the challenges autism brings,” Kelley said. “Every time we line up for the walk, and I look around to see the support we have, as well as the number of families surrounding us who live similar lives to ours, I can’t help tearing up.” g
26 • The Spectrum, Winter 2018
Host a Fundraiser to Help Families
Volunteers throughout our state host fundraisers to benefit the Autism Society of North Carolina. They rally friends, families, and colleagues to participate in restaurant nights, donate proceeds from the sale of various items, or create a unique event. It all starts with an idea. If you are interested in hosting your own fundraiser, please contact Heather Hargrave at firstname.lastname@example.org or 919-865-5057. ASNC is grateful to the many individuals and businesses that hold fundraisers to help families affected by autism. Here is a list of recent events and supporters: 23rd Group, LLC Abbotts Creek Elementary School’s jeans day fundraiser
Charlotte Motor Speedway, LLC’s Katelyn Sweet’s Better Half Dash
Langtree Charter Academy
Murphy Medical Center’s tree fundraiser
Allstate’s jeans day fundraiser
Coddle Creek Elementary #318
American Asset Corporation’s Family Fun Puzzle Run 5K
Community Yoga with Kim Grant
Anita Sutton’s Wine for a Reason fundraiser
D.H. Conley High School’s softball fundraiser
Bass Lake Draft House BDO USA’s jeans day fundraiser
Crossfit 40/42 WOD
David Allen Company
Ben & Jerry’s North Hills
Dobson Elementary School’s duct tape fundraiser
Benjamin McCall’s Autism Sprint
Dunkin’ Donuts Antiquity Car Show
Bleecker Automotive Group
Books for Good, Inc.
Brixx Wood Fired Pizza
Flour Power Kids Cooking Studios
Burlington Royals Baseball Club, Inc.
Flyin High Kingz Motorcycle Club
Carson Reeves’ lemonade stand fundraiser
Forest City Owls
Champs for Camp fundraiser
Garner Farms, Inc.
Charlotte LeBeau’s House of Awareness fundraiser
SAVE THE DATE
Gamers Guild Garner High School’s NC Autism Awareness Challenge - Ryan Tingle Grand York Bodies of NC and Russell Rainear Green Circle NC Guilford College Men’s Lacrosse Gwendy’s Goodies
LKN Coffee and Cars NCTBC, LLC North Carolina Football Club Peebles - Store #5176 Pink Magnolia Boutique Pita Pit Raleigh Giving Party Raleigh Orthopaedic Clinic’s jeans day fundraiser Rebecca and Eddie Hurst’s Wine for a Reason RTP Maharashtra Mandal Youth Wing 5K Saint Matthew Catholic School Sharkey’s Cuts for Kids Southwest Guilford High School Sydney Ramey’s Strikeout for Autism Tap Beer Festival Team Walking with Nolan Texas Steakhouse RDU’s Dine Out for Autism fundraiser Tre Nonne Italian Restaurant Tuna Run 200 Vibhu Surapaneni
Halie’s Boutique Harrisburg Elementary School’s Coins for Autism fundraiser Huckleberry Trail Farms Kendra Scott Designs S AT U R DA Y
Northwest Shopping Center
Puzzle Run Huntersville
Kennedy Kreations Kiddie Academy of West Cary Kirsty’s Scentsy Shop Kona Ice www.autismsociety-nc.org • 27
AmeriCarna LIVE Car Show
More than 4,000 people enjoyed the fifth annual AmeriCarna LIVE car show in Davidson in November with host Ray Evernham, legendary NASCAR championship crew chief and team owner. They were treated to a record 600+ cars, including entries from current and former NASCAR drivers Ryan Newman, Dale Earnhardt Jr., Daniel Suarez, Joey Logano, and Rusty Wallace; team owner Rick Hendrick; car clubs; and proud collectors. The show and a Friday evening reception raised more than $170,000 to benefit IGNITE, a program operated by ASNC for young adults with high-functioning autism or Asperger’s Syndrome. Two generous sponsors, MSC Industrial Supply Co. and Ingersoll Rand, each donated $15,000 during the car show. IGNITE offers activities, skills training, and educational workshops that foster social, financial, educational, and employment independence for members. More importantly, IGNITE offers a social environment where members can connect with others and experience a sense of community. Evernham, who has a son on the spectrum, said he hopes AmeriCarna LIVE will continue to grow. “This is an incredible place of love and unselfishness every year,” he said. g
Banner Elk Parents Give Back with Wine for a Reason Five years ago, Rebecca and Eddie Hurst’s son, Mark, was diagnosed with Autism Spectrum Disorder. Mark, who is now 9, “is a very brilliant boy who loves videogames, LEGOs, math, and reading Captain Underpants books, and knows more about technology than we do!” Rebecca said. Mark’s biggest challenges are social interaction and sensitivities regarding food, noise, and clothing, but his mom says he is making progress. “Mark, a child who really doesn’t like to be touched, has just started asking if he can hug Eddie and me… which is a huge thing for all of us!” He also is receiving all A’s in school. As parents of a child with autism, the Hursts understand how important programs and supports are to the progress of individuals with autism. “Shortly after Mark’s diagnosis, we learned about the Autism Society of North Carolina and all of the wonderful support they give families who live with autism,” Rebecca said. “From that point on, Eddie and I decided we wanted to give back however we could to ASNC.” The Hursts found a fun and profitable way to do that, creating the annual Wine for a Reason benefit. Rebecca’s employer, Linville Falls Winery in Newland, provides a free venue for the familyfriendly event each year. Wine for a Reason includes music, food, beverages, and a silent auction, with all proceeds and donations going directly to ASNC. 28 • The Spectrum, Winter 2018
In four years, the couple has raised more than $18,000! “With the rate autism is growing, no doubt most everyone knows or will know someone with ASD,” Rebecca said. “That is why it so important to help these amazing individuals live happy, healthy, and successful lives.” The couple plans to continue holding Wine for a Reason each spring. “A world of acceptance, understanding, and kindness is what we wish for our son,” Rebecca said. “We are so incredibly thankful to our community, friends, and family for embracing Wine for a Reason and realizing how vital organizations like the ASNC are to those families living with autism.” g
The Autism Society of North Carolina would like to extend a heartfelt thank-you to all of our donors. While we appreciate every gift, we have limited the donation list to Honorarium/Memorial gifts in the interest of space and printing costs. Thank you for your tremendous support. This list reflects donations received on or between July 1, 2017, and November 30, 2017. Please contact Beverly Gill if you have any questions or corrections at 800-442-2762, ext. 1105, or email@example.com.
Honorariums Rosemary Betts
Tessa-Jonne and David Ropp
Diana and Paul Bischler
Jackson Campolmi Marsha, Maggie, Drew, Drayton and Hank Thrasher
Marc Chandgie Jane Loewenstein and Richard Levy
Charlie Carroll Mary Daniel Sharon Gunn and Family Christie Jacobin Kevin Liverman Margie Liverman Kori McIntyre Susan Schultz
Barbara and Bill Briley Kimberly Ford and Family
Faye and Don O’Brien
Peg and Jay Adamczyk Kelly Lange and Edward Bohn Lori and David Jessey James Piccarreto Jeffery Ryan
Michael Freeman-Pollard Paula Munos
Caele and Richard Gambs
Roman Glabicki David Glabicki
Thomas Harrison Douglas Justice
Jamie Ross Hayes Jennifer Frey
Sue and David Hayes
Joyce and George Johnson
TIFF Advisory Services, Inc.
Marie and Joseph Blizzard
Marie and Joseph Blizzard
Deborah and Richard Brunstrom Kristen and Ron Howrigon
Lindsay and James Bedford
Jaye Hunt Danny Jarvis Jeffery Laya Toriano McRae James Myrick Jennifer Vo
Crystal Marion Peg and Jay Adamczyk
Avery and Andrew Miller
Snow Creek Elementary School
Sylvia and Paul Mitchell
Alicia Nance Mitchell Connie Hucks
Holly and Joseph Petrilli
Alex Reynolds Jane Williams
Marissa Paige Robinson Varnell Kinnin
Thomas Sergi Joseph Sergi
Faye Figlewski Darlene and Milton Rhodes
Faye Figlewski Darlene and Milton Rhodes
Bobby Stanley Nancy Carr
Katie and Lewis Wills
Amanda Box Craig Fletcher Rebecca Geisenhoffer Xavier Hill Zachary Hooper
Linda and Kenneth Lane
Walt Bowen Sara, Tom, Lindsay, Adam, Kelsey and Tim King
Julianne “Judy” Hurd Earnhardt Elizabeth, Stephen and Austin Hodges Hilary and Tim Johnson Carol and Robert Wells
Ralph Leon Ewbank Meadowview Reformed Presbyterian Church Louise and James Demby Carolyn and Allan Renaud Caitlin Williams
Robert William “Bill” Fisher, Jr.
June Call Lynn and Jim Honeycutt
Kristie Lynn Fousek
Terminix of High Point
Marilyn Sarow Katie and Lewis Wills
Edith Cooley Freeman
Susan and Richard Garkalns Bonnie York
Tarah Burnette Angela Byrd Chad Chappell Robert Christian Angie Cousin Margaret DeRamus Gabriel Dichter Pete Duquette Kathy Ellis Wes Galbo Heather Hazlett Frederick Henderson Laura Hiruma Jeff Low Lynn Makor Jean Mankowski Laura Martin Nancy McKenna Sherry Mergner Beth and Roger Oakley Casey Okoniewski Greg Olley Morgan Parlier Joe Piven Laura Politte Becky Pretzel Debbie Reinhartsen Jack Roush Lisa Sawyer Melissa Scott Mark Shen Betsy Spaulding Leigh Anne Weisenfeld Deb Zuver
John J. McGovern Jeanne McGovern and Michael Schwenk
Donald F. Olash Amy Krebs
Barbara Chase Grove
Lt. Colonel Richard Owen
Owen K. Owens
Fredrick “Jesse” James
William Carl Penci
Alice Lehnes Judy Brown Barbara Pandy
Kathy and Lanny Vaughan
Stewart Engineering Susan and Chuck Beck Diane Dunn Carol and Stephen Romeo
Elijah Cole Kolker-Kicks
George Rigsby Massey, Jr.
Daniel John Raybon
Megan, David and Miles Whitlow Linda and Brad Griffin
Randall Hinds Linda and Brad Griffin
Lucille and Richard Floyd
www.autismsociety-nc.org • 29
Henry Graves “H.G.” Richardson Harriet Howe Cathryn Martin Lynne and Robert Richardson
Ruby Madeline Shepard Belville Elementary’s Exceptional Children’s Department
LaThora Hope “Kittie” Slazas
Safe in the Community We want to help you keep your loved one with Autism Spectrum Disorder safe.
The Safe in the Community section of our website, at www.autismsociety-nc.org/stayingsafe includes many resources that can help with wandering and other safety concerns. • social narratives to teach individuals how to be safe
• ID card you can print or order
• links to other resources and products such as ID labels
• tips sheet on wandering prevention • printable “personal information record” for you to fill out and share with first responders
• “Person with Autism” decals or clings you can order for your home or vehicle
PERSONAL INFORMATION RECORD Name of child or adult with autism: ________________________________________________________________________________________ Nickname: _________________________________________________________________________________________________________________________ Date of birth: __________________________________________________________ Age: ___________________________________________________ Height:___________________________________________________________________ Weight: _______________________________________________
MAY NOT RESPOND TO VERBAL COMMANDS
Do not isolate yourself: Talk to neighbors about children or family members with Autism Spectrum Disorder (ASD) and their challenges, in case they wander out of your home or yard. Give them your contact information. Consider asking them, and any other friends and family who live nearby, whether they would be willing to help you search for your child in an emergency situation. Keep a list handy of names and phone numbers for those who agree.
Eye Color:_______________________________________________________________ Hair Color: __________________________________________
Attach recent photo here
Identifying marks or scars: ___________________________________________________________________________________________________ Parent(s)/Guardian(s) Name: ________________________________________________________________________________________________ Address: ___________________________________________________________________________________________________________________________
oc tisms iety-n au c w.
Primary phone number:________________________________________________________________________________________________________
Tips for Keeping Loved Ones with Autism Safe
ADDITIONAL CAREGIVER Name: _____________________________________________________________________________________________________________________________
Directions: Print this page out, cut along the dotted line, and fold where indicated.
Address: __________________________________________________________________________________________________________________________ Primary phone number: ______________________________________________________________________________________________________ Secondary phone number: ___________________________________________________________________________________________________
Email address: __________________________________________________________________________________________________________________
________ ________ ________ ________ ________ ________ __ Ag ________ e: ________ _______ ________ Eye Co ________ lor: ____ ________ ________ ________ __ Hair _ ________ ________ Color ________ Primary ________ : ________ ________ ________ phone ______ ________ ________ numb ________ ________ er:____ ________ ________ ________ ____ ________ ________ ________ ________ ________ EMER ________ ________ GENC ________ ________ Y CONT _______ ________ Name ACT ________ : ________ ________ ________ ________ ____ ________ Primary ________ ________ phone ________ numb ________ er:____ ________ ________ ________ ________ ____ ________ ________ ________ ________ ________ ________ ________ __ ________ ________ ________ ____ Heigh
At school/day care: Discuss with your teachers your concerns about your child’s safety. Make sure they and any other caregivers know what to do if your child wanders. Make safety part of Individualized Education Program (IEP) goals.
In your home: Consider putting safety items in place such as a home security alarm system, window locks, and alarms on windows and doors to alert you if someone is trying to open them. For some children, a simple lock is effective if it is out of their reach. Sometimes putting a “stop” sign on doors and windows can prevent a person with ASD from going any farther. Consider putting a fence around your home with locked gates. If you have a pool, make sure the pool is not accessible without supervision. Teaching your child to swim is important, but it isn’t a guarantee that it will save someone from drowning.
Register your child: NC counties keep special-needs registries, and families can register their loved one. If a 911 call comes in from the family’s home, the registry automatically pulls up important information for first responders.
“SAFE IN THE COMMUNITY”
Teaching your loved one: Teach your child how to safely cross the street; the meaning of street signs, such as “STOP”; and who is a safe person and who is a stranger. Talk to your child about safe places to go if they are lost or hurt: police stations, fire stations, schools, etc. Consider using social stories or picture schedules to teach them what to do in dangerous situations that they might encounter once they wander.
AUTISM SPECTRUM DISORDER SAFE IDENTIFICATION CARD
Address: __________________________________________________________________________________________________________________________ Primary phone number:_______________________________________________________________________________________________________ Secondary phone number: ___________________________________________________________________________________________________
Care of Children and Adults with Autism
• Might NOT UNDERSTAND what you say, appear to be deaf, be unable to speak, or speak with difficulty. • Might appear INSENSITIVE TO PAIN. • Might DART AWAY from you unexpectedly. • Might WANDER ANYWHERE AT ANY TIME. Wanderers are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a person with autism.
Email address: __________________________________________________________________________________________________________________
• Might become UPSET FOR NO APPARENT REASON.
METHOD OF COMMUNICATION: if nonverbal (e.g. sign language, picture boards, written word )
• Might engage in SELF-STIMULATING BEHAVIORS such as hand flapping or rocking.
• Might NOT be able to make EYE CONTACT.
ID ON PERSON: (e.g. jewelry, clothing tags, printed card, or tracking device)
Check with the local 911 center to see whether
the affected person is “red-flagged” in the
MEDICAL CARE PROVIDERS:
Physician:_____________________________________________________________________________________________________________________________ Phone number:________________________________________________ Dentist: _______________________________________________________________________________________________________________________________ Phone number:________________________________________________ Other: __________________________________________________________________________________________________________________________________ Phone number:________________________________________________ Current prescriptions, including dosage: _________________________________________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ Sensory, medical, allergy, or dietary issues and requirements: ____________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ Inclination for wandering and any atypical behaviors or characteristics that might attract attention: ________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________
Favorite attractions and locations where person might be found: ________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________
(name of person with autism)
AUTISM SAFE SPECTRUM IDENTI D FICATI ISORDER ON CA RD
Likes and dislikes, including approach and de-escalation techniques: ___________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________________________________________________________________________________________________________
E IN T HE C
Tips for On-Scene Caregivers and Emergency Personnel for the
Identification information: Consider a wearable ID such as a bracelet, tags in their clothing or on their shoes, or even electronic tracking devices. For sources, click here.
Primary phone number:________________________________________________________________________________ Name: ______________________________________________________________________________________________________
EMERGENCY CONTACT Primary phone number:________________________________________________________________________________
Our Autism Resource Specialists offer a workshop titled “Staying Two Steps Ahead: Safety Considerations for Caregivers,” which covers how autism can affect safety, how to be proactive, and safety-related resources. Find the schedule for all of our workshops at www.autismsociety-nc.org/workshops. Address: ___________________________________________________________________________________________________
Parent(s)/Guardian(s) Name: ________________________________________________________________________
Height:_______________ Weight: ________________Eye Color: ______________ Hair Color: ______________ Nickname, if any: ______________________________________ Age: _________________________________________
g the d otted
Our trainers also conduct workshops for first responders across the state, teaching them how to interact with individuals with autism. Let us know if you would like us to collaborate with your local officials. We can work together to keep our loved ones safe. If we can help you in any way, please contact us at 919-743-0204 or firstname.lastname@example.org, or find an Autism Resource Specialist near you: www.autismsociety-nc.org/resourcespecialists. 30 • The Spectrum, Winter 2018
Constance and J.H. Kolpitcke
Bob King Automotive Capital Ford, Inc. Capital Nissan of Wilmington Deacon Jones Auto Park, Inc. Dodgeland of Columbia, Inc. Christy and Jeff Dunn John Hondros Barbi and Brian Kilcoyne Krista and Robert Lovell Teresa and Chester Michael April Safar Heather Thornton The Bartasavich Family Maryellen and Charles Brooks Catherine Robinson and Robert Foran
Secondary phone number: ____________________________________________________________________________________________________ Email address: ___________________________________________________________________________________________________________________
Meet first responders: Go to your local police station, fire station, and EMS to talk about your loved one with autism and give officials a current photo and a personal information handout. (We have an example you can use here.) If possible, bring children with autism so they can see people from whom it would be safe to seek help. Adults with ASD and those with high-functioning autism or Asperger’s Syndrome may have sophisticated spoken language but still not respond properly to officers. It is important to teach these individuals what to say if they are lost or hurt and to self-advocate. You can let first responders know that ASNC also offers training sessions for them if they would like to learn more about how to interact with individuals with ASD. Our Autism Resource Specialists have found that when requests come from families, rather than our organization, first responders are much more receptive to having the training.
Carol Ann Smith Mills
Robert G. “Bobby” Stanley
Joy and Bob Barrell Cecile Blau and Allen Oman Ann Faurest and Wayne Eichert Susan and William Grubbs Christie Lunsford Dianna Ott Patricia and Ronald Rasmussen Dan Zachary
Mayo Lynam Renita, Mike and Harrison Raisor Marla and Mark Tasch
Zachary Ryan Warner
Joanne and Peter Aspesi Gregory Moebs
Mary Masterman Weeks
Alvin L. Glick Foundation, Inc. Downer, Walters & Mitchener Rita and Scott Braswell Frances Jones
Richard Paul Woolson
ASNC Clinical Department Erica Brown Jim Phillips Louise Southern Erica Stern Martie and Robert White Nilda and Larry Wolman Myrtle Wolman
Darlene and Lee Raxter
Call on us!
The Autism Society of North Carolina improves the lives of individuals with autism, supports families affected by autism, and educates communities. Autism Resource Specialists connect families to resources and provide training to help you become your child’s best advocate. As parents of children with autism themselves, they understand your concerns. Find yours: www.autismsociety-nc.org/resourcespecialists Workshops and conferences with our Autism Resource Specialists or Clinical staff will help you learn more about topics that concern you, such as early intervention, evidence-based practices, IEPs, transitioning, and residential options. See the complete schedule: www.autismsociety-nc.org/workshops Online resources, including toolkits, webinars, a blog, and a Staying Safe section, provide opportunities to learn on your own time from your home. www.autismsociety-nc.org Chapters and Support Groups around NC provide a place for families who face similar challenges to feel welcomed and understood as they offer each other encouragement. Find one near you: www.autismsociety-nc.org/chapters Skill-building and support services provide children and adults with autism the skills to increase self-sufficiency and participate in the community. ASNC’s services across the state include skill-building in areas such as communication, socialization, community integration, and personal care; family consultation; respite; and adult day programs. Services are provided through the NC Innovations waiver, state funding, B3, and private pay. Contact us to learn which supports are available in your region. www.autismsociety-nc.org/skill-building LifeLong Interventions provides comprehensive treatment across skill domains and the lifespan. This service is rooted in the principles of ABA and involves intensive teaching, using evidence-based practices to promote appropriate skills and behaviors. LifeLong Interventions is directed by a psychologist who supervises PhD and master’s level psychologists and Board Certified Behavior Analysts. Training is provided by registered behavior technicians under the direct supervision of these clinical professionals. ASNC is an in-network provider for many insurers, including BCBSNC, Aetna, and United
Healthcare. Children under 21 who rely on Medicaid are also eligible to receive treatment under EPSDT. We also provide treatment through private-pay arrangements. www.autismsociety-nc.org/clinical Behavior consultations provided by our psychologists and BCBAs can help explain why behaviors are occurring, develop comprehensive behavior plans, and coach caregivers on effective strategies. www.autismsociety-nc.org/clinical Employment Supports helps individuals with autism explore their skills and interests, then assists them in finding, keeping, and thriving in a job. Services are funded through the state Division of Vocational Rehabilitation. www.autismsociety-nc.org/employmentsupports Camp Royall is the nation’s oldest and largest camp for individuals with autism. Located near Pittsboro, Camp Royall serves all ages and offers year-round programming, including an afterschool program. www.camproyall.org Social Recreation programs provide opportunities for participants to bond over common interests, practice social skills, and try new activities. In Newport, Wilmington, Winterville, and Brunswick and Onslow counties, social recreation programs include summer day camp, afterschool programs, and adult programs, with support from Trillium Health Resources. In other areas, afterschool programs and social-skills groups for a range of ages and abilities are available. Contact us to learn which services are available in your region. www.autismsociety-nc.org/socialrecreation The ASNC Bookstore is your one-stop shop for quality autism books and materials selected by our experienced staff. The bookstore employs adults on the spectrum, and all proceeds benefit ASNC. www.autismbookstore.com ASNC’s public policy efforts aim to advocate for the needs of individuals with autism and their families by maintaining a wide range of ties with the executive and legislative branches of state government. You can get involved and make your voice heard. www.autismsociety-nc.org/make-voice-heard
www.autismsociety-nc.org We have regional offices in Asheville, Charlotte, Fayetteville, Greensboro, Greenville, Newport, Raleigh, and Wilmington. Contact our state office to be connected to resources.
ASNC State Office
800-442-2762 5121 Kingdom Way, Suite 100 Raleigh, NC 27607
Non-Profit Org. U.S. Postage
5121 Kingdom Way, Suite 100 Raleigh, NC 27607
Raleigh, NC Permit No. 2169
W e’ ve Move d!
Spring 2018 Events Carolina Hurricanes Autism Awareness Night Raleigh - March 2 World Autism Awareness & Acceptance Day Camp Royall - April 2 Eastern Run/Walk for Autism Greenville - April 7 Charlotte Hornets Autism Awareness Game Charlotte - April 8 Cabarrus Run/Walk for Autism Concord - April 14
Surry County Walk for Autism Mount Airy - April 21 Coastal NC Run/Walk for Autism Wilmington - April 28 Camp Royall Classic Golf Tournament Chapel Hill - May 7 Crystal Coast Run/Walk for Autism Beaufort - May 12 Catwalk to Camp Charlotte - May 3
For more information, please contact Heather Hargrave at 919-865-5057 or email@example.com
2018 ANNUAL CONFERENCE
Autism + Health What you need to know
March 23-24 • Hilton University Place • Charlotte