Autism is Hard; That’s Why We Do This Together

This article was contributed by Amy Perry, an ASNC Autism Resource Specialist and mom to a daughter with autism.

SONY DSCWhenever I see the movie “Mary Poppins,” I smile at one of the film’s early scenes in which the next door neighbor fires his cannon every day. Everyone in the house automatically anticipates this temporary disruption by manning their “posts” to catch falling breakables and straighten the pictures on the walls. While a blast that shakes the whole house would be a disaster in most residences, it is just routine maintenance and survival in the Banks household. This scenario reminds me of what it’s like to live with autism.

In the wake of Autism Awareness Month, I find myself wondering whether the general public is actually aware of how hard it can be to have a child with autism. Sometimes autism is hard in ways that nobody talks about: like walking through the produce section of the grocery store with my 17-year-old daughter, praying she doesn’t take a bite out of a random piece of fruit or sniff the wrong stranger. At home, we keep the refrigerator locked because my daughter will drink a bottle of BBQ sauce if given the chance. We keep extra rolls of toilet paper hidden, because if we don’t, we risk them all ending up in the toilet at once. It’s fine to have dishes, cooking utensils, or even junk mail on the kitchen counter, but for reasons I will never understand, it is an unforgivable offense to leave out salt shakers or seasonings. (That’s my daughter’s rule, not mine.) Our house has adapted to these “quirks” of autism, and I seldom think about them until I’m at an autism-less house.

Autism presents challenges on several levels. There are the day-to-day survival tricks; we adapt and modify our behaviors or our environment within our own family such as never, ever running out of applesauce or having a copy of “Barney’s ABCs” for every DVD player in the house. There’s the bigger picture of dealing with autism within our extended network of family and friends. Have you ever had a well-meaning friend or relative ask “How’s _____ doing?” and your mental response is “you wouldn’t believe me if I told you what I had to clean up last night” or “my life is somewhere between ‘Apocalypse Now’ and ‘Madagascar.’” Then there’s the big question: “What’s going to happen in the long run? Does autism grow up?,” a question so scary I didn’t allow myself to even ask it for years. There is a lot to worry about, think about and plan for. How can anyone survive this, and not only survive, but have a child with autism who is thriving?

Recently, I read a research study on the benefits of parental support groups in families who have children with autism. I wasn’t surprised to see research reveal something I already knew. Parents of children with autism who participate in support groups report a higher quality of life for themselves, their families, and their children. This is especially true for families who have had a child recently diagnosed with autism. The CDC reports that the incidence of autism is now 1 in 68. That’s a lot of families, a lot of moms and dads struggling to adapt their lives for the special child that is no doubt their greatest joy as well as their greatest challenge. One of the best things about the Autism Society of North Carolina (ASNC) is that at any event you go to – support groups, chapter meetings, camps, conferences, workshops – it’s full of people who “get it.” There are other people who have to lock their refrigerator or follow strange rules in hopes of avoiding a meltdown or a domestic malfunction.

ASNC is here for you because we are you. We get it. We do it every day. We sit in IEP meetings and feel lost, we struggle to accept or decline invitations at well-meaning friends’ or relatives’ homes, we ignore strangers who stare, we pretend shrieking in the checkout line is normal. We learn from each other’s experiences. There’s the very special grin when we hear another person telling their story and it sounds so much like our own. Support for families really does make life better, for you as well as for your child. ASNC offers a plethora of support groups, workshops, and parent education meetings every month. I have no doubt that you want the best life possible for your child with autism. The first step, the next step, just might be for you.

Please visit one of our groups, workshops, events, or trainings, and find something that meets your needs where you are. As an Autism Resource Specialist for ASNC, I teach a variety of monthly workshops in my area designed to help parents who are new to the diagnosis, who are looking for more resources and a place to get their questions answered, or who want to learn more about the ever-popular topic of special education and IEPs. Workshops and webinars on these topics and more are taught by Autism Resource Specialists across the state. Something is happening somewhere every week. Contact your local chapter, connect with us on social media, get involved. You’re one of us.

Autism is hard; that’s why we do this together. I look forward to seeing you at an ASNC event soon.

 

For more information

 

Amy Perry can be reached at 910-864-2769, ext. 1206, or aperry@autismsociety-nc.org.

ASNC Advocates for People with Autism and Their Families

Editor’s note: The following blog post is a Q&A with Jennifer Mahan, ASNC Director of Advocacy and Public Policy, and Kerri Erb, Senior Director of Quality and Programs. We have merged their responses to each of the questions.

What does “advocacy” mean to you personally and within the scope of your job?

website_jen website_kerriMost advocacy is about issues of fair treatment and discrimination. People should be able to have the same opportunities as others, the same choices, and our world should not set limits based on their condition or disability. Being an advocate means having a voice in decisions that are made and speaking out for yourself or others. As people, and for the organization, when we look at advocacy and public policy, we consider:

  • Is this going to improve people’s lives?
  • Will it offer them the opportunity to succeed?
  • Does it improve not only the individual’s life, but our communities?
  • Does it make sense? Is it informed by what people say they need? What data supports it or can we collect data about it?
  • What outcomes will this help us reach as an organization and for people with Autism Spectrum Disorder (ASD) in NC and how can we improve on those?

Advocacy at ASNC is both one-on-one with individual people and systemic to change the way our world operates and make it more inclusive. It takes a number of forms, but all have those goals at the center. When we say “advocacy,” we mean:

  • Assisting families that are helping and supporting other families in their communities through our Chapters and Support Groups.
  • Our Autism Resource Specialists helping individuals on the spectrum and their families sort out problems and find resources, and providing a supportive ear when times are difficult.
  • Our staff coordinating with other providers, local management entities, professionals, families, communities, schools, and other organizations to provide quality services.
  • As an organization, voicing the needs of people with autism in the development of public policies and implementation of public programs. We work across systems, at the legislature, in the state administrative offices, and at the regional and local level to meet that part of our mission. This ranges from MCOs that serve multiple counties down to small towns.

Why is it important that the autism community have advocates?

The incidence of autism is on the rise; an estimated 60,000 people with autism live in North Carolina. Because autism is a spectrum disorder, the needs of those 60,000 are going vary across the range of the spectrum as well as across ages. Studies show that because of autism’s significant impact on families’ time, resources, and finances, there are unique needs for an autism advocacy voice at the state and local level. Individuals and families know their own needs and can best articulate what will help them to succeed. With the pressures of raising a child with autism and managing the services and supports needed as they age into adulthood and beyond, self-advocacy can be lost in the focus on day-to-day issues. Our goal is to give a voice to these collective needs. We know our voice is strong, but it is not enough. We need everyone who is affected by autism to lend their voices. Responding to surveys, getting involved with the work of the organization, and, yes, speaking and writing to their elected officials. We need to be sure we are speaking to benefit the next generation. We advocate for early, accurate screening and diagnosis, and using research to guide our system toward what is known to work best.

How many people do you have working as advocates for the autism community? Who else works on policy- and advocacy-related issues and what are their roles?

Many families and individuals are amazing advocates for themselves. Recognizing the need for more advocacy and supportive services, ASNC has worked in conjunction with the Department of Health and Human Services, the state legislature, and community donors to develop support for families in need of advocacy help.

Autism Resource Specialists: ASNC is the only resource in the state that provides individuals with ASD, their families, and professionals with information, resources, support, family-to-family connections, and system navigation that is tailored to their unique situation. We employ 19 Autism Resource Specialists throughout the state who have firsthand knowledge and experience with autism as parents of children on the autism spectrum.​ Many of our resource specialists work part-time; we are always working to ensure we have enough resources to meet demand. With resource specialists responding to more than 6,000 requests for help last year from 93 identified counties across NC, resources are often stretched thin.

Chapters and Support Groups: ASNC also has two staff members who, with the help of some part-time Regional Coordinators, are dedicated to supporting Chapters and Support Groups covering 60 counties across NC, as well as a specialty support group for families with children in the autism and behavioral specialty units at Murdoch Developmental Center. These chapters are led primarily by volunteers, mostly parents and family members, whose generous spirit and passion for their own children inspire their desire to help other families facing similar challenges. ASNC is working to provide support groups in counties where no such groups exist. As our base of support groups and volunteers expands, so does the need for staff and group facilitators to ensure that groups remain viable for the long term.

Systems and Public Policy: Jennifer Mahan and Kerri Erb are primarily responsible for, as we describe it, advocating for what policies should look like and how they should operate in the real world. There are a lot of opposing forces at work in changing large systems, and change often takes a long time to sort through the many viewpoints. Jennifer and Kerri are supported by our CEO and Communications staff as well as many other people in the organization lending their expertise. Jennifer and Kerri only spend part of their time on policy. Each is responsible for ensuring the delivery of other services for ASNC, including our direct services, training and education, clinical services, Autism Resource Specialists, and Support Groups/Chapters as well as helping manage quality and data collection.

All ASNC staff: Our Regional Directors, Program and Services staff, clinical staff, and really all of our staff do their part to help individuals and families to follow their dreams and advocate for themselves. Many staff members serve on advisory groups for a variety of community settings such as schools, churches, and LME/MCOs.

Read the second part of our Q&A with Jennifer Mahan and Kerri Erb on Thursday.

Autism Spectrum Disorder diagnoses rising, CDC says

Editor’s note: The Centers for Disease Control and Prevention (CDC) has announced new prevalence rates for Autism Spectrum Disorders. The Autism Society of North Carolina’s Director of Communications, David Laxton, participated in the conference call announcing the results of the study. Here are his notes and observations with some insights as to what the numbers mean for our state.

On Thursday, March 27, 2014, the Centers for Disease Control and Prevention released new data as part of their biennial estimates of Autism Spectrum Disorder (ASD) prevalence rates. This effort has occurred since 2000.

  • The data included new prevalence rates for the sample population of 11 states and communities that were monitored through the Autism and Developmental Disabilities Monitoring Network (ADDM). The prevalence rate of ASD is now 1 in 68, a 30 percent increase since the 2012 report, which showed it to be 1 in 88.
  • The median age of diagnosis across the sites was 4 years old.
  • ASD is still five times more common in boys than in girls. White children are more likely to be identified than children in minority groups. Most children are diagnosed after age 4.
  • The most notable change in the past decade is the growing number of those diagnosed who have average or above-average intelligence. A decade ago, it was one-third; now it is 50 percent.
  • A subset of the data was specific to NC and indicated a new prevalence rate in our state of 1 in 58 children. This is an increase of 17 percent from the 2012 data. (The data were from an 11-county sample in central NC totaling 37,783 children.)

What is causing the increase?

  • There was a 30 percent increase in the prevalence of ASD in two years. Some of that was attributed to how individuals with autism are identified and diagnosed in communities.
  • Additional awareness among parents and child-care, school, and medical professionals has helped identify children at risk at an earlier age.
  • Significantly, NC had the youngest median age (37 months) of diagnosis for ASD in the study.

During the media call, the CDC announced a new “Birth to Five: Watch Me Thrive” initiative, which is a federal, cross-agency effort launching today. The initiative has 4 goals:

  • Celebrate developmental milestones via regular screenings
  • Promote developmental/behavioral screening for all (language, motor)
  • Identify delays and concerns early through regular screenings.
  • Enhance developmental supports by providing tools, guidance and tips.

What does this mean for North Carolina? How does the Autism Society of North Carolina help?

  • Early screening and diagnosis continue to be critical. We offer a variety of workshops and information about the signs and symptoms as well as a statewide network of Autism Resource Specialists to answer questions from families, caregivers, and professionals. The ASNC Training department continues to consult to early intervention programs and offer trainings about early diagnosis and best practices.
  • Understanding ASD is critical. Once a child is diagnosed, what do you do? There is a wealth of information available, but how can parents determine the best course of treatment for their children? The ASNC Autism Resource Specialists and Clinical staff are available to provide individualized consultation and family training.
  • Early diagnosis and intervention helps individuals on the autism spectrum lead more productive lives. The Autism Society of North Carolina, in partnership with other organizations, is working to pass HB 498, which would require the State Health Plan and private insurance policies to cover costs associated with the diagnosis and treatment of autism. This will provide significant financial relief to families while saving the state money.
  • There is no cure for autism, but by focusing on the individual’s strengths and working to improve their weaknesses, we can help individuals with ASD live, work, and contribute in meaningful ways to their communities.

“When my son Andrew and I were diagnosed with autism 20 years ago, the Autism Society of North Carolina was there to help us with services and support, as it had been doing for North Carolinians since 1970,” said Dave Spicer, a member of ASNC’s Board of Directors. “Through ASNC, professionals, parents, volunteers and people like me with autism are working together to provide North Carolina’s autism community with the best possible resources to enhance quality of life for everyone affected by autism. We stand ready to listen, and ready to help.”

Families and community members are invited to join ASNC for a free World Autism Awareness Day celebration at Camp Royall in Moncure on Wednesday, April 2, from 10 a.m. to 4 p.m. This is an opportunity to learn more about available services and supports.

The Autism Society of North Carolina is committed to providing support and promoting opportunities that enhance the lives of individuals on the autism spectrum and their families. Individuals interested in supporting ASNC’s efforts can donate online at www.autismsociety-nc.org.

To read the complete CDC report, click here.

To read a report on the NC portion, click here.

Spotlight on the Cabarrus County Chapter

CabarrusRunners

Editor’s note: For those who have a loved one with Autism Spectrum Disorder, a community of support can be a lifeline. For more than 40 years, ASNC Chapters and Support Groups have provided families who face similar challenges an opportunity to encourage one another, share experiences, find information and resources, and have a place where they feel welcomed and understood. These volunteer-led groups also offer education to families, increase autism awareness and understanding, and support and extend ASNC’s mission in their local communities.

Throughout this year, we are highlighting the ways each of our Chapters and Support Groups makes a difference. To find one near you, please click here or contact Marty Kellogg, ASNC State Chapter Coordinator, at 919-865-5088 or mkellogg@autismsociety-nc.org.

♦ ♦ ♦

For families affected by autism in Cabarrus County, the local chapter of the Autism Society of North Carolina (ASNC) has become a sort of extended family.

“We’re there for each other. We think that’s what it’s all about,” said Maria Anthony, leader of the Cabarrus County Chapter. She explained that many residents of the area are not originally from there and so do not have a local support system.

Anthony said that when she had knee surgery, other members of the chapter took care of her family for two weeks. “We’ve kind of built a village network. We’re all friends and we help each other out.”

Twenty to 30 members attend each of the chapter’s monthly meetings, Anthony said, many of them couples attending together. The chapter makes that possible by hiring three child-care workers for each meeting.

CabarrusRunGroupTo help pay for the workers and other activities, the chapter holds the annual Cabarrus County Chapter Puzzle Run each spring. This year will be their fourth, and they’ve raised their goal to $10,000. As of this writing one week before the March 29 event, they had less than $1,000 to go.

Anthony said the Puzzle Run is a fun day for all involved. The chapter invites area resources to set up information tables, and there is a bouncy house for the kids. But what the kids really like is the running. “They’re freaky fast,” she said. “They run like crazy. They just love it.”

In addition to paying for chapter activities, the Puzzle Run raises money for grants that the Cabarrus County Chapter provides to local teachers – about $23,000 worth since 2005. The teachers use the money to buy materials “above and beyond what are provided by the schools” and to attend community-based training, Anthony said. Some have bought special stools for their students, weighted vests, and even a Nook e-reader so that students could work on apps shown to benefit children with autism.

Another way that the chapter has reached out to its community is by donating thousands of dollars’ worth of books on autism to local libraries and the Exceptional Children’s Assistance Center.

Chapter leaders get together each June to decide their activities for the year. They hold a monthly meeting and have social activities about once every other month.

They also like to try a new activity or event each year. This past year, the chapter started a social group for teens and adults with Autism Spectrum Disorder, and attendance has doubled in the past six months, Anthony said. Participants have truly enjoyed it, Anthony said, relating a comment she heard from one 24-year-old.

“He just looked at me and he said, ‘Thank you. Now I met somebody like me.’ ”

Cabarrus County Chapter

Website: http://www.autismcabarrus.com/ or search “Autism Society of NC Cabarrus County” on Facebook

To learn more about the 4th annual Cabarrus County Chapter Puzzle Run set for this Saturday in Concord, click here. You can still register on-site that morning to support local families affected by autism!

World Autism Awareness and Acceptance Day: Send a Kid to Camp Campaign

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On Wednesday, April 2, recognized as World Autism Awareness Day, families across NC will mobilize in support of people affected by autism. The goal is to help others understand autism, while raising $10,000 in one day to send kids with autism to summer camp. This campaign is led by families across the state who understand what is possible when campers with autism experience summer camp.

Camp Royall, the nation’s oldest and largest camp for individuals with autism, provides life-changing experiences to campers every year. Campers learn to swim or make their first friend, all while their families enjoy a much-needed break. For many campers, this would not be possible without scholarships.

“This camp has given my son the chance to be a kid in a world that understands and embraces him.” – Parent of a camper

Photo-159 What can you do?

Sign up to attend our World Autism Awareness and Acceptance Day celebration and come to Camp Royall so you can see this magical place! The activities and lunch are free, but we will accept donations. To help us plan for staffing and food, please RSVP by clicking here. Help us reach our goal of raising $10,000 in one day to send kids to camp by making your donation here. Spread the word about our World Autism Awareness and Acceptance Day celebration and our Send a Kid to Camp campaign.

“I hope I get to come back here next year!” – Amy, Camp Royall camper

We Need You

If each family that reads this blog inspires five people to donate $20 – enough to give a camper an hour of summer camp to learn skills once thought unattainable and families a much-needed break – we will exceed our goal. Spread the word by issuing this challenge to friends through email, Facebook, Twitter, or your blog.

To learn more about what makes Camp Royall “The Best Week Ever,” click here: http://www.youtube.com/watch?v=HMfi7YwtUmE&list=UUxEhhhjCt0oT18J6pjP78TA

What is World Autism Awareness and Acceptance Day?

DSC_0806In 2008, the United Nations General Assembly unanimously declared April 2 as World Autism Awareness Day to highlight the need to help children and adults with the disorder to lead full and meaningful lives. The Autism Society of North Carolina recognizes that acceptance of each person as an individual and of their ability to contribute to society is just as important, so we include “Acceptance” in the day’s title.

After last year’s event, a mother shared a wonderful perspective on the day. Read it here: http://therighthue.com/2013/04/02/professor-hank/

Spotlight on Grandparents & Chapters

EileenandMilesHancox

Editor’s note: For those who have a loved one with Autism Spectrum Disorder, a community of support can be a lifeline. For more than 40 years, ASNC Chapters and Support Groups have provided families who face similar challenges an opportunity to encourage one another, share experiences, find information and resources, and have a place where they feel welcomed and understood. These volunteer-led groups also offer education to families, increase autism awareness and understanding, and support and extend ASNC’s mission in their local communities.

Throughout this year, we are highlighting the ways each of our Chapters and Support Groups makes a difference. To find one near you, please click here or contact Marty Kellogg, ASNC State Chapter Coordinator, at 919-865-5088 or mkellogg@autismsociety-nc.org.

♦ ♦ ♦

Grandparents often hold a special place in today’s families. Economic realities mean that extended family members may have to lend a hand in rearing children. For families dealing with Autism Spectrum Disorder, grandparents can provide an extra layer of support that is greatly needed.

In some cases, grandparents are the primary caregivers. Annette and Steve Horsley of Winston-Salem have reared their two grandsons since the younger one was a toddler. Aaron, 11, and Sam, 9, both have autism, and the Horsleys lead the Davidson County Chapter of the Autism Society of North Carolina (ASNC). Annette says they were inspired to start a local chapter after seeing a Surfers Healing event on the coast and learning of an ASNC chapter’s work with the group.

“When we get together and share, it’s like we’re not alone,” Horsley says of her chapter. Hearing for the first time that your child has autism can be overwhelming, she says. But talking to other caregivers in the same situation lets those families know: “You will survive this.”

Grandparents, especially, can offer solace, because they often have gone through challenges with their own children, who are now adults. “We can say our children are in their 30s, and we lived through it,” Horsley said, laughing.

The Davidson Chapter is very active, offering one social activity and one educational meeting per month. Horsley said they are particularly proud of the chapter’s work to partner with other local agencies to get families the help they need. “I’m excited that we’re all working together for Davidson County. We’re actually reaching out to the community.”

The Wayne County Chapter also works with agencies in its county to expand opportunities for local families, said Terry Daily, one of the co-leaders. The chapter meets once a month, often inviting speakers in for educational programs, and leaders also share details of programs by other agencies so members can attend.

Daily and his wife adopted their granddaughter with autism in 2008 and are her primary caregivers. They have been a part of the chapter for about 10 years, since learning  while they had custody of her that Kimberly, now 10, had autism.

Marty Kellogg, State Chapter Coordinator, said, “Terry is a passionate advocate for his granddaughter and works tirelessly in the chapter to help and support other families.”

Daily said some grandparents face a unique challenge if they are the primary caregivers for grandchildren with autism. “Unless you have custody of the child, your hands can kind of be tied,” he said. Noncustodial caregivers have difficulties getting services for their loved ones.

Grandparents support groups

In other areas of North Carolina, ASNC has started support groups especially for grandparents.

Eileen Hancox of Raleigh said learning that her grandson Miles, now 7, had autism was difficult for her. “With a grandparent, it’s a double whammy,” Hancox said, remembering the worry she felt not only for Miles, but for her son and his dreams for his own child. “They’re still your kids, and this isn’t what they bargained for.”

Hancox decided that what she needed was a place to brag about Miles, a place to share her joys and concerns – a place just for grandparents. Nothing like that seemed to exist locally, so she started one: a grandparents support group through the Wake County Chapter of ASNC. Members meet once a month to listen to a speaker and spend some time sharing. “We can be honest and know that it’s going to stay in that room,” Hancox said. “I am so excited with the response.”

Kellogg said she is also pleased and excited that chapters have begun creating support groups for grandparents. The Guilford County Chapter also has started a group for grandparents to share their unique perspectives and learn from speakers. Lisa McCutcheon-Gutknecht, the Guilford leader, said future plans will be shaped by feedback provided by the grandparents.

“We hope to see more of these groups spring up across the state as our chapters continue to meet the needs of all their family and community members,” Kellogg said.

For more information

Davidson County Chapter: autismsociety.davidsonnc@gmail.com

The chapter meets on the third Thursday each month at the Lexington library. The chapter will learn about Camp Royall’s year-round offerings at 6 p.m. March 20.

Wayne County Chapter: http://home.earthlink.net/~asncwayne/

The chapter usually meets on the third Friday each month at St. Luke Methodist Church in Goldsboro. Autism Resource Specialist Katie Holler will speak at the meeting at 6:30 p.m. March 21.

Wake County Chapter: http://wakecountyautismsociety.org/

For information about the grandparents group, email Eileen Hancox at eileenhancox@gmail.com. The group meets on the second Tuesday each month at the  ASNC state office, 505 Oberlin Road, Raleigh.

Guilford County Chapter: asnc.guilford@gmail.com

The Guilford grandparents group will meet at 10 a.m. Wednesday, March 19, at the ASNC Greensboro office.

You can also find all of the chapters on Facebook.

Spotlight on the Durham County Chapter

project lifesaver plain

Editor’s note: For those who have a loved one with Autism Spectrum Disorder, a community of support can be a lifeline. For more than 40 years, ASNC Chapters and Support Groups have provided families who face similar challenges an opportunity to encourage one another, share experiences, find information and resources, and have a place where they feel welcomed and understood. These volunteer-led groups also offer education to families, increase autism awareness and understanding, and support and extend ASNC’s mission in their local communities.

Throughout this year, we are highlighting the ways each of our Chapters and Support Groups makes a difference. To find one near you, please click here or contact Marty Kellogg, ASNC State Chapter Coordinator, at 919-865-5088 or mkellogg@autismsociety-nc.org.

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Children with autism are more likely to run from caregivers than other children; so much so that the problem has been given many names: wandering, elopement, bolting. They might have phobias or sensitivities that make them likely to run away in certain situations. Once they have escaped supervision, their fascinations can prove deadly, drawing them to water, trains, or traffic.

In Durham, the local chapter of the Autism Society of North Carolina (ASNC) took action to keep individuals on the spectrum safer by working to bring Project Lifesaver to the county. The program provides equipment and training so local first responders can quickly locate missing, at-risk individuals, such as those with autism or Alzheimer’s disease. Individuals wear transmitters that emit a signal that can be picked up by equipment at the rescue office.

Matt Senior Photo YBSusanne Harris, who was a chapter leader and is now on the ASNC Board of Directors, knows from personal experience how important a program like Project Lifesaver can be. Her son Matthew, who has autism, has always been a “runner,” she said. “You got a gold star as a teacher if you didn’t lose him at some point.”

When Matthew was 15, he went missing from a Myrtle Beach cottage where Harris was vacationing with her parents. “I turned my back for just a few seconds to put a pillowcase on, and my child was gone,” she said.

Matthew, who has good receptive communication skills but not expressive skills, was missing for more than two hours. During that time, dozens of people joined his family in searching the area. They looked in nearby pools; he loves to swim and is quite good at it, thankfully. They combed the beach, where darkness was beginning to descend. They looked through the rides at a nearby pier. The police, sheriff’s office, and fire departments joined the search. They even brought in two helicopters.

Meanwhile, Harris was thinking, “I am the worst mother in the world.”

Matthew was eventually found safe in a nearby pool, but Harris believes they could have skipped a lot of the ordeal – and the expense – if he had been wearing a Project Lifesaver transmitter. When she called 911, it was the first thing the responder asked: “What is his Project Lifesaver number?”

“If we had had the Project Lifesaver piece, we would have found him in 15 minutes,” Harris said. She brought the idea to the Durham Chapter of ASNC. (Matthew, now 21, is enrolled in Project Lifesaver in Carrboro, where he lives in a group home.)

To establish the Project Lifesaver program in Durham County, chapter members had to raise about $4,500. They held restaurant fundraisers, solicited donations, and sought sponsors so they could purchase the best equipment with the widest range. They also had to gain the backing of the Durham County sheriff’s office, because the deputies would be the ones to receive the training.

“Our sheriffs have really gone above and beyond,” said Tiffane Land, a past leader of the chapter who also spearheaded the Project Lifesaver efforts. Land said the sheriff’s office created a task force of those who are trained to participate in the program, and they perform practice runs. They also meet with families who are participating – about five right now – so they get to know the individuals they might be searching for later, building a rapport.

This year, Land said, the ASNC chapter will continue to raise money for the Project Lifesaver program in Durham, because it costs hundreds of dollars a year per participant. In Durham, families are enrolled at no cost to them. The individual must have a history of wandering, and the family must commit to keeping a log that shows they have checked the device twice a day and changed the battery once a month.

Shelagh Kenney, the current leader of the Durham Chapter, said that the chapter also has an active Google group that members use to share information and resources. She hopes to bring in more families to take an active role in the chapter, to be there for all families, from those with new diagnoses to those facing the transition to adulthood. “I really would like to do more to help those families feel that they have a community,” said Kenney, mom to a 6-year-old on the spectrum.

For more information

  • Durham County Chapter of ASNC website: http://www.durham-autism.org/
  • Contact: Terri Meyers, ASNC regional chapter support, at tmeyers@autismsociety-nc.org or 919-743-0204
  • The chapter’s next meeting will feature a Q&A with one of ASNC’s Autism Resource Specialists from 6:30-8 p.m. Tuesday, March 25, at Watts Street Baptist Church, 800 Watts St., Durham.
  • Project Lifesaver: Learn more about the program and where it is available on the website: http://www.projectlifesaver.org/
  • Safe in the Community: For more information about how to keep your loved one safe in the community, please see the safety section of our website, which includes tips, resources, printable forms, and free “Person with Autism” decals.
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