54 April 2010 • EP MAGAZINE/www.eparent.com

Like most parents,Jose Ruiz, a Combat Engineer stationedin Camp Lejeune, N.C., and his wifeJohan have done everything they can tomake sure their home is safe for theirthree children, Hari (7), Ale (5), andAllyson (3). But they worry about Ale,who was diagnosed with autistic disor-der in October of 2008. Ale loves to runaway, a playful habit that could lead to adangerous situation at home, school, orout in the community.

A Very, Very Big Concern“He started running when he was about 3years old,” says Jose. “And he can run veryfast! When we take him out to the store,he could be standing right next to us andthen all of a sudden ‘poof!’ – he’s gone.”

That was exactly what happened dur-ing a trip to the grocery store last year.One minute Ale was at his parents’ side,the next he was running down the aisle,heading for the door. Fortunately, theaisle was full of shoppers and he wasnot able to get past them.

“At school it’s the same problem,”Jose continues, describing how he oncewatched Ale jump right out of a swingand head for the gate of the school yardthe moment his teacher started toannounce that recess was over.

“We have learned that children withautism are very unpredictable,” he says.“For us, that represents a very, very bigconcern because if we’re not paying atten-tion, he can literally disappear in a snap.”

Jose and Johan shared this concernwith Ale’s behavior analysts – MarianneIdol, M.A., and Whitney Hendricks, M.A.,– and they began addressing the prob-lem immediately. Both women are boardcertified behavior analysts (BCBAs) withMay Institute’s Southeast RegionalAutism Center in Jacksonville, N.C., whowork with families at Camp Lejeune andin surrounding areas. They have beenworking with Ale since October 2009,soon after the Center opened.

“It wasn’t until May Institute came toJacksonville last year that we had accessto applied behavior analysis (ABA) ther-

Safety FirstFor Children with AutismSpectrum DisordersBy Anne Stull, M.A., LPA, BCBA,and Patricia Ladew, May Institute

United States Military Section

Marianne Idol, M.A., BCBA, a May Institute behavioranalyst, works one-on-one with Ale in his home. Ale

is learning to “stop,” using visual prompts.

All parents worry about their children’s health, happiness, andgeneral well-being, but parents of children with autism spectrumdisorders (ASD) and other developmental disabilities must oftenmake extraordinary efforts to ensure that their sons and daugh-ters are safe both inside and outside the home.

Children with ASD and other special needs may be more like-ly to act impulsively—to run away or wander—than their typi-cally developing peers. This puts them in greater danger ofbecoming lost or getting hurt. If their families are in active mili-tary service, frequent relocations may make it even more diffi-cult for them to be familiar with their surroundings or to distin-guish a stranger from a friend. For these children, basic safetyskills may some day become critical life-saving skills.

0410mil-may.la 3/17/10 9:19 AM Page 54

www.eparent.com/EP MAGAZINE • April 2010 55

apy for Ale,” Jose explains. “We were onwaiting list after waiting list…we werewaiting for a good year before Ale start-ed receiving ABA therapy.”

ABA is a methodology that applies basicbehavioral practices to increase skills andappropriate behaviors and decrease inap-propriate behaviors. It is the only treat-ment reimbursed by TRICARE’s ExtendedCare Health Option (ECHO) and EnhancedAccess to Autism Services Demonstration(“tutor”) programs for military familieswith children with ASD.

Teaching a Child to StopUsing ABA techniques that includebreaking down tasks into small steps andproviding lots of positive reinforcementand opportunities to practice, Marianneand Whitney have been teaching Ale tostop when asked. They work on thissafety-related goal during their homevisits, trying to make it as fun as possible.

“They started by walking right next toAle and then stopping, walking andstopping,” explains Jose. “Now they areat the stage where they take a couple ofsteps forward just to see if he stays put,then call him and see if he comes for-ward, then ask him to stop again and seeif he responds. They do this over andover and over again.”

Another fun and effective way

Marianne and Whitney teach Ale to stop isby using a sign that has a red “stop” signon one side and a green “go” light on theother. They prompt Ale to stop when thestop sign is facing him and go when thegreen light is facing him, reinforcing thelesson by saying the words “stop” and “go”when they show the corresponding sign.This helps him associate the word with therequest. With patience, persistence, and alot of practice, Ale will learn to respondappropriately to the “stop” request inother settings and without the sign.

Depending on the child’s preferences,ABA practitioners provide “reinforcers,”

or rewards, such as praise, edible treats,or small toys immediately after a childgives the correct response. After thechild consistently stops when requested,the behavior analyst may take him out-side to practice. If he does not repeat, or“generalize,” the proper response to the“stop” request outside, they may go backinside for additional practice.

Ale’s favorite rewards are drawing andplaying with Play-Doh. When he firstbegan receiving in-home therapy,Marianne and Whitney used Play-Doh tokeep his attention and encourage him tostay at the table.

Working with the IEP TeamWhen a school-aged child is receivingin-home ABA therapy, his behavior ana-lysts usually become part of theIndividualized Education Program (IEP)team at school. That way, they are ableto offer input during the development ofhis behavioral support plan.

At Ale’s school, his behavioral ana-lysts have “joined the team” thatincludes his classroom teacher, specialeducation teacher, speech languagepathologist, the principal, and his par-ents. The team meets to ensure that thetreatment goals implemented at homeare consistent with those implementedat school and vice versa. Because theteam provides this consistency acrosssettings and works toward shared goals,Ale has many more opportunities topractice. As a result, he can often masterthese goals more quickly.

There are ongoing opportunities tocollaborate with the school’s team. Agood example is Ale’s treatment planand IEP, which were recently updated.Marianne, and Whitney met with hisspecial education teacher to review hisnew treatment goals at home and hisnew IEP goals at school to ensure thatthey were consistent before implement-ing either of them. Working together, theteam has created a comprehensive pro-gram with current goals and objectivesthat address Ale’s unique needs. Ale’ssafety-related treatment goals for thenext quarter include compliance (e.g.

The Ruiz family posesfor a family photo.

Pictured (l-r) are Johan,Hari, Jose with Ale,

and Allyson.

Jose is very proud of Ale’s great work

with Marianne.

0410mil-may.la 3/17/10 9:20 AM Page 55

56 April 2010 • EP MAGAZINE/www.eparent.com

“stop” and “come here”), waiting (e.g.waiting before going outside, etc.), andlearning personal information.

Teaching Personal InformationBehavior analysts often include thissafety-related skill in a child’s in-homebehavioral goals. It is very importantthat children like Ale, who impulsivelyrun or wander away, learn some basicpersonal information such as their par-ents’ names and phone numbers. Then,if they get lost, they can tell someonewho their parents are and how to con-tact them.

With Ale, Marianne and Whitneystarted by making sure he could tellpeople his name. “Then it was his firstname and last name,” says Jose. “Thenmy name, then his address, then thephone number, then his birthday andhis age,” he continues. “Now they’reabout to start adding in the name of theschool, his teacher’s name, his city, andhis brother’s and sister’s names.”

When teaching a child to memorizehis phone number, behavior analystsmay use a visual prompt at first, so thechild can identify each of the numberson a piece of paper when asked, “Whatis your phone number?” Again, depend-ing on the child’s preferences, a reward

can be provided immediately after heresponds correctly. Once the child isconsistently saying his phone numberwith the visual prompt, the numbers canbe “faded out” (i.e., take one numberaway, then two, three, and so on). Thenumbers will continue to be removeduntil the child can give the number with-out the visual prompt, when asked,“What is your phone number?”

Teaching children with ASD who arenon-verbal how to communicate impor-tant personal information poses addi-tional challenges. Some may be able tocarry a card that has their name,address, hometown, telephone number,and parents’ names on it, but this maynot be feasible for all children. Thisinformation can also be conveyedthrough the use of safety temporary tat-toos or stickers that a child can wear out

in public. This eliminates the need toregularly confirm the child still has thecard with him.

Occasionally, children are so excitedabout memorizing their phone numberor address that they will recite it to any-one who will listen. It is important toteach them that we only share personalinformation in certain situations, andwith certain people.

Wandering and “Stranger Danger”A big concern for parents of childrenwith special needs who are inclined torun away or wander is that they maybecome lost or encounter an adult whomight try to harm rather than help them.

For Ale, strangers do not pose a dangerbecause he is very wary of people he doesnot know and will scream if a strangertries to talk to him. And, at this point, Joseand Johan are not worried about Ale run-ning or wandering away when he isinside their house. “That’s not a concernyet,” says Jose, “but there is the possibili-ty that he might start opening doors lateron. Both his therapists have impressedupon him that, if he wants to go out, hemust ask an adult to open the door.”

“If parents have children with ASDwho are able to open doors and are atrisk for wandering away and possiblygetting lost or hurt, they might want toconsult a professional who specializes inboth the behavioral treatment of ASDand the behavioral treatment for wander-ing,” advises Susan M. Wilczynski, Ph.D.,BCBA, Executive Director of the NationalAutism Center. “This professional will beable to conduct a thorough functionalanalysis to determine the reason for thechild’s actions.” According to Dr.

Safety First

Serving Military Families Across the Country

May Institute’s Regional Autism Centers in Georgia, Massachusetts, and North Carolina arededicated to meeting the immediate and pressing need for services for children with autismspectrum disorders in all branches of the military – Army, Marines, Navy, Air Force, and CoastGuard. Additional sites in Connecticut, Florida, and California also offer services for militaryfamilies. The Institute is planning to further expand its ability to serve military families throughnew Centers in Texas, California, and Hawaii, all in close proximity to key military installations.

Salute to Safety

This month, in honor of Autism Awareness Month, May Institute’s Southeast Regional AutismCenter (SERAC) in Columbus, Ga., will team up with the local police and fire departments, andlocal safety organizations, to present the second annual “Salute to Safety.” This event combinesfun and games with important safety information for families and “first responders” alike. Itprovides an opportunity for police officers, fire fighters, and emergency medical service (EMS)personnel to interact with children with special needs.

“We give these kids the opportunity to meet police, fire fighters, and EMS workers in afriendly and fun environment,” explains Amy Bontrager, Community Outreach Coordinator forthe Southeast Regional Autism Center. “This makes it more likely that they will react positively tofirst responders in the future.”

The event also exposes first responders to some of the sensory issues and behaviors displayedby many children with autism spectrum disorders and other special needs. “Then, when theycome into contact with these children in the community,” Bontrager continues, “they willrespond more effectively.”

For more information, contact the Southeast Regional Autism Center at 706-571-7771.

0410mil-may.la 3/17/10 9:20 AM Page 56

www.eparent.com/EP MAGAZINE • April 2010 57

Wilczynski, there are four primary rea-sons why a child might run away or wan-der: to gain access to desirable items oractivities; to get attention; to avoid unde-sirable situations; or because they requirea different level of sensory stimulationthan is currently available (the childmight feel the need to run after sitting fora long period of time, for example).

After the reason for the running awayor wandering has been determined, anindividualized treatment program canbe developed to address the behavior.”This program should outline specificactions that parents will take if a childruns away or wanders,” Dr. Wilczynskiadvises. “It should include suggestionsfor how they might re-structure theenvironment so the child is less likely torun away.” At the same time, both verbaland nonverbal children should betaught successful strategies for gettingtheir needs met. “For example,” contin-ues Dr. Wilczynski, “it is best to teach achild to request a visit to the local parkif his reason for running away is tospend time in that location.”

Despite the best efforts of familiesand professionals, some children maycontinue to run and wander away. Whenthat is the case, parents may consideradditional precautions throughout thehome, as well as safety devices or prod-ucts. Some families invest in personaltracking devices or systems that canhelp to locate their child if he runs orwanders away.

It is important that children who areat risk for wandering away and encoun-tering strangers be taught to identifymen and women in uniform such aspolice officers or fire fighters – or evenstore clerks with identification badges –who will be most likely to offer assis-tance if they are lost. When possible, it isequally important to share relevantinformation with local safety personnel,and to educate these individuals aboutthe unique needs of these children.

Keeping children with ASD or otherdevelopmental disorders safe at home,school, and in the community is atremendous responsibility and challenge

for military and civilian families through-out the country. Fortunately, families likeAle’s have discovered that there areskilled behavior analysts, dedicatedschool personnel, and caring “communi-ty helpers” ready to provide support andguidance every step of the way. •

Anne Stull, M.A., LPA, BCBA, is a licensed psycho-logical associate and a board certified behavior

analyst. Anne served as Clinical Director andSenior Behavior Analyst at May Institute’sSoutheast Regional Autism Center outside FortBenning, Ga., before moving to Camp Lejeune toopen the Institute’s second Center last year. TheSoutheast Regional Autism Center in NorthCarolina serves Marine Corps families with chil-dren with autism.

Patricia Ladew is Senior Communications Writerfor May Institute’s Office of Communications. Shehas specialized in healthcare writing for morethan 20 years.

Call For Stories!Exceptional Parent magazine wants to help you share your stories. We are currentlysoliciting articles for inclusion in the military section of EP in the following areas.

• Stress Management: We are looking for contributors who can discuss how they manage stress in dealingwith the military health care system, their child’s disabilities, and deployments.

• Mental Health Issues: We are seeking information about how military families have coped with a diagnosis ofchildhood depression related to having a military parent. Also, we want to know how veterans dealwith the depression associated with Post Traumatic Stress Disorder (PTSD) and other warinjuries. Additionally, we are soliciting stories and articles about families coping with a diagnosis ofmoderate to severe anxiety. Do veterans face anxiety as they encounter treatment for injuries and how doesthe military help them cope with the anxiety of continued and prolonged treatments?

• Traumatic Brain Injuries (TBI): Throughout the year, we plan to continue to tell the stories of how WoundedWarriors and their families overcome injuries and cope with the lingering issues of TBI.

• Assistive Technology: In July, we would like to find military contributors who will tell stories of how assistivetechnology has helped a military child or adult with disabilities in their daily lives.

• Prosthetics: With the current conflicts in Iraq and Afghanistan, many of our servicemembers are returning homewith life-changing injuries. We are asking these brave individuals to share their stories of how the use ofprosthetics and other aids are helping them recover from these injuries and transition to different ways ofliving at home.

• The Military Child and War: Are you a returning vet (or the spouse to one) who has a war-related disability anda young child? Explaining your injury and “coming home different” can be a difficult process for a militaryfamily. Please share your story on dealing with this aspect of military family life.

• Assistance Animals: The May issue will include stories from contributors who have assistance animals in their families andhow those animals have contributed to the well-being of their child, veteran, and/or family.

• Sports and Recreation: In June, we would like to find military contributors who utilize Sports and Recreationalactivities for individuals with special needs.

For more information, deadlines, and questions about these and other story ideas, please contact EP’s Military Editor at

militaryeditor@eparent.com.

RESOURCE LISTAutism Society of America’s “Safe and Sound” campaign (www.autismsociety.org)

National Autism Association’s “Autism Safety Toolkit” (www.nationalautismassocia-tion.org)

Safety Net Source, information for caregivers of people at risk of wandering, provid-ed by LoJack (safetynetsource.com)

Georgia Department of Community Health, Emergency Medical Services andTrauma, STAR Kids Program (www.ems.ga.gov, 404-679-0547 or 706-321-6150)

0410mil-may.la 3/17/10 9:20 AM Page 57