In this month’s ASAT feature, Executive Director David Celiberti, PhD, BCBA-D, offer, OPs his thoughts on expanding autism awareness once April has ended. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!
Autism Awareness Month will soon come to a close. The blue puzzle pieces will disappear from Facebook pages and billboards, the media will focus their attention on other topics of interest, and we will return to business as usual. And business as usual is not OK, particularly given that so many children and adults with autism are not accessing the most effective, science-based interventions that will allow them to realize their fullest potentials.
When I first entered the field over twenty-five years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with “artistic” children. Today, autism is no longer the rare diagnosis that impacts someone else’s child. Our extended families, our neighbors, and our co-workers are now all touched by autism. With 1 in 68 children receiving a diagnosis, the sheer number of individuals with autism is staggering and heightens awareness in and of itself.
For many conditions, awareness is key because awareness promotes detection, and with detection comes a relatively clear path towards treatment. Take, for example, conditions such as Lyme disease and many forms of cancer. Better prognoses are attached to early detection. Within a few short weeks of detection and diagnosis, patients typically receive science-based treatment. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen. In the world of autism, detection is not the “be all and end all.” We do not just have a detection issue in autism, but also, and perhaps more importantly, we have an intervention issue.
It is my hope that the conversation about autism awareness will be broadened to focus upon and overcome the obstacles that separate individuals with autism from effective, science-based intervention, and that those that separate their families, caregivers, and teachers from accurate information about autism intervention.
I leave you with 10 ideas about what “autism awareness” should be about.
* Please see the questions that appear at the end of this article to promote more careful decision making at https://www.asatonline.org/pdf/roadless.pdf
* You will find examples of accurate and inaccurate reporting at https://www.asatonline.org/for-media-professionals/about-media-watch/ ASAT is undertaking proactive steps to enhance accuracy in media reporting.
We all play a role in bettering the lives of individuals with autism and helping their families and supporters become skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important conversations and an even bigger part of the solution.
David Celiberti, PhD, BCBA-D, is the part time Executive Director of ASAT and Past-President, a role he served from 2006 and 2012. He is the Co-Editor of ASAT’s newsletter, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis, and early childhood education, and been an active participant in local fundraising initiatives to support after school programming for economically disadvantaged children. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to applied behavior analysis (ABA) at both the undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.
This week, Understood and teacher Ginny Osewalt share an innovative way you can help your child with handwriting.
If your child is a struggling writer or has dysgraphia, she may have poor handwriting and trouble with spelling and getting her thoughts down on paper. It may be hard for her to read back what she’s written. She may fatigue easily or avoid writing altogether.
When writing gets in the way of your child learning or showing what she knows, having her dictate her responses to a scribe can be an appropriate accommodation. At home, that scribe may be you.
When you scribe for your child at home, here’s a way to get your child more involved in the process. This tip helps your child take ownership of her written work—and provides some handwriting practice, too.
All you’ll need is a thin yellow highlighter and a piece of lined paper. When your child dictates, use the highlighter to record, word for word, her thoughts and responses. Be sure that you’re using good letter formation. Pay attention to the lines and margins on the page, and use appropriate spacing between words. After your child has finished dictating, hand her the paper on which you’ve scribed.
Next, have her trace over the yellow text with her pencil, starting with the very first word and continuing down to the last punctuation mark. When she’s finished tracing, have her read what she’s written to herself and make any changes without your help (if possible). Then, have her read it aloud to you.
You may be amazed at how well your child adapts to this scribing method. Just keep in mind that scribing shouldn’t replace good classroom writing instruction. Also, be sure to explore the wide range of assistive technology tools available for struggling writers, like keyboards and dictation software.
About The Author
Ginny Osewalt is a dually certified elementary and special education teacher with 14 years of experience in the classroom. She is also an Understood expert.
This post originally appeared on Understood.org
This week, writer and mom Ruth Manuel-Logan shares her tricks for travel with children on the spectrum.
Traveling with children can be daunting, and when you travel with a child who has autism and requires organized structure, venturing out into unfamiliar surroundings can add an entirely new dimension to the experience.
Autism is a spectrum of neurological disorders characterized by severe and pervasive impairment in various areas of development such as language and social skills. It affects 1 in 88 children, primarily boys, and it is most often detected by age 3. Because children with autism typically require predictability, vacations can be over-stimulating and distressing for the child with autism.
Unfortunately, there are many parents with children on the autism spectrum who are afraid of journeying beyond their own communities. Even thinking about taking a vacation can summon up feelings of trepidation in parents and family members. Caregivers are overwhelmed at the thought of managing quirky, self-injurious, or violent behaviors that their child might exhibit in public; they also fear stares, rude comments, or judgments by others. They may opt, therefore, to keep their special needs child at home.
But traveling with kids who have autism is possible and doesn’t have to be difficult. Here are tips that can make your trip a pleasurable one for your child and a positive experience for the family.
Choose the Best Destination for Your Child
Vacations mean transition, which children with autism may find difficult. You have to know your child and have a thorough understanding of his needs first. Children with autism tend not to be socially intuitive, and new experiences can result in meltdowns, so planning what can be executed and enjoyed by your child is imperative. “Children with autism are stress detectors. They sense others’ stress and react in ways that are considered an interruption to the planned agenda for the day. For this reason, vacations at the beach or in the mountains, where schedules are often flexible and unhurried, can be ideal for a child with autism,” says Rebecca Landa, Ph.D., Director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, Maryland.
Does your child like amusement parks? Is hiking in your child’s comfort zone? Do you find that his sensory issues fade when he’s basking in the sun on the beach? No matter where you travel, you should always remember the activities that your child will enjoy. Try not to overload him by bombarding him with too many things to do, as this will cause stress for everyone involved.
Include your children as active partners in the planning. Adapt it to your child’s interests, information-processing abilities, and attention span, and relate it to the upcoming trip. Researching the destination and how you’re getting there, and talking about accommodations and the kinds of activities that are well suited to your child are all part of planning process.
Make Arrangements Ahead of Time
Calling ahead to make special arrangements will make your trip easier. Contact airlines, hotels, restaurants, and amusement parks and explain that you are traveling with a child who has autism; discuss your needs and request certain accommodations.
Kim Stagliano, mom of three girls ages 11, 15, and 17 (all whom have autism) and author of All I Can Handle: A Life Raising Three Daughters with Autism, is a firm believer in planning ahead before she and her husband take their trio anywhere. “If we fly, I use the pre-boarding opportunity to tell the airline staff that the girls have autism, so that they can understand if we have a situation and offer us extra assistance if we need it.
Many major airlines, theme parks, hotels, and restaurants are often amenable to the needs of children with autism. In 2011, Logan Airport in Boston hosted a free rehearsal flying experience, called Wings for Autism, for children with autism and their families so that personnel can better understand the community. Families from three states — Massachusetts, Connecticut, and New Hampshire — took part in the airport dress rehearsal. JetBlue even lent one of their planes for the event and its flight crew volunteered their time. Families were allowed to go through a mock airport experience, including a normal screening process with airport staff checking to see how a child reacts when a favorite toy or backpack is taken away for scanning. Then they boarded the plane and helped practice staying seated and belted. Airports in Philadelphia and Newark have staged similar events and Manchester Airport in London produced an informative brochure on flying with autism, called “Airport Awareness.”
Theme parks across the country are also finding ways to accommodate children with autism. “We usually go to the guest relations office that can be found in most theme parks and request special passes so that we don’t have to wait on long lines,” says Amy Dingwall, of Trumbull, Connecticut, whose 17-year-old son, Ryan, has autism.
Prepare Proper Identification
Having a child with autism means increasing your safety quotient; many kids tend to wander and flee from adult supervision. According to a survey released in April 2011 from the Interactive Autism Network, wandering is probably the leading cause of death among children with autism. Even more dangerous is the nonverbal child who wanders and cannot supply any information.
Getting your child a medical bracelet or necklace with contact information is essential, particularly when traveling. If your child has sensory issues that would prevent him from wearing the jewelry, you can order ID tags that can be attached to shoelaces or even zipper pulls (like the ones from Zoobearsmedicalid.com). If your child is nonverbal, you might want to make an ID card to put in his pocket with a current photo, contact information, and a list of allergies. Be sure to also indicate that your child is nonverbal. “No matter where you go, remember to think ahead about safety for your child,” Dr. Landa advises.
You could also have your child wear an autism symbol ribbon or even a shirt with an autism message or organization logo so that strangers get a visual reminder. “Our kids are so good-looking, folks are often taken aback by ‘unexpected’ behaviors. Place a label with your child’s name, your name, and a cell-phone number on the back of the child’s shirt while traveling so that if you become separated, a kind soul can contact you,” Stagliano suggests. When Stagliano’s daughter was 12 years old, she slipped out of sight at Newark Liberty International Airport in New Jersey and came close to boarding a tram. “No one may have noticed a kid on her own, but she would have been in grave danger.”
Pack the Essentials…and Some Distractions
Put together a checklist to ensure that you leave nothing behind that your child will require. Children on the autism spectrum often need reinforcements, many of them tangible, so don’t forget to bring these along on your trip to reward his good behavior. All children are attached to their loveys, but children with autism can’t leave them behind because they see the loveys as extensions of themselves; forgetting them can end up putting the brakes on a much-anticipated getaway.
Soothers such as MP3 players, DVDs, or a favorite piece of string or eraser usually keep children calm and preoccupied. Think of your child’s daily routine and bring along the necessities that help him get through his day — snacks, toys, books, diapers/Pull-Ups, or assistive communication tools. Show your child what you are packing just in case he feels any angst about your forgetting any favorite items. “We go to extremes to make sure our three girls have their familiar items to help them feel comfortable,” Stagliano says. “This includes electronics like their iTouch or MP3 player, portable DVD player, games, or iPad. We make sure to pack a suitcase full of distractions.”
Practice Vacation Scenarios in Advance
Let your child know what she might expect to do or see on vacation. Role-playing what might take place during the trip can ease future regrets. Creating a sequential picture story of what will occur is an enlightening and effective tool in getting your child ready for the trip. Experts say that these types of word/picture scenarios can help relieve stress and reduce problem behaviors in children with autism.
“The entire preparation process should be spread out over the course of many weeks. Each day, create a routine where you ‘talk’ about the trip together. You and your child can arrange pictures related to the trip in the order in which the events will occur chronologically. Help your child organize pictures of the hotel or family member’s house where you will be staying into a collage or other visual arrangement. You can even provide a simple explanation or caption for each picture. As the trip nears, your child will be able to help narrate the captions and event descriptions, or affirm your narration,” Dr. Landa says. “You know your child best, so be sure to tailor the amount and complexity of information to his or her needs.”
Dingwall finds that preparing Ryan just a few days before a trip works best for him. If she reveals details about a vacation too far ahead in advance, Ryan will lose sleep because of his anxiety and will also perseverate, a common trait among children with autism, whereby they repeat a certain phrase or action. “We are always prepared with two types of picture schedules — one on Ryan’s iPod Touch, using his picture-based prompting app iPrompts, and the other a backup with pictures and Velcro backings that can easily be switched as needed,” Dingwall says.
Always Set Aside Breaks
Vacations do not fall into usual routines, so children with autism may feel lost and unanchored, and that can lead to breakdowns. Know your child’s trigger points and plan accordingly. “We don’t feel as if we have to spend all day at a theme park. Just a few hours that my daughters can handle and then a swim is much easier than eight long hours in a park followed by meltdowns. We also make sure to stick close to our bedtime routine even though we’re on vacation. Getting a good night’s sleep often helps prevent [unruly] behaviors,” Stagliano says.
Does your child tend to tire at around the same time each day? Does too much visual or physical stimuli kick start bouts of anxiety? Did you overschedule your child? “As you assemble the trip agenda, it’s essential to plan for breaks and downtime so that it is not an afterthought,” Dr. Landa cautions. As the parent, you have to know when to throw in the towel by anticipating needs and taking a break by bringing your child to a quiet spot, a relaxation space, or back to the hotel room to wind down.
Copyright © 2012 Meredith Corporation. Reviewed and updated 2013.
About The Author
Ruth Manuel-Logan is the proud mom of a 12-year-old child with autism whom she loves to Reese’s Pieces. Ruth is hopeful that she’ll be able to flip on the auto pilot switch and allow her son to make his own independent mark in the world one day.
Article originally posted on Parents.com
Fidgets, like squeeze balls and key chains, are self-regulation tools that promote movement and tactile input. They can be great for kids who struggle with attention, focus and sensory processing.
But in my many years as a teacher and parent, I’ve often seen them misused. When I see a child throw a squeeze ball across the room or obsess over making shapes out of Silly Putty, I know something’s gone wrong.
The problem is we often hand fidgets to kids without any direction, thinking they’ll magically know how to use them. Then when they play with them—rather than use them as a tool—we get angry.
That’s why it’s important to teach kids how to use fidgets. Here’s what I suggest.
First, explain to your child that a fidget is one strategy in her “tool kit” to help her improve focus on a task. When used correctly in the right situation, fidgets can help her be a better listener, sustain attention on her work, and even calm down or slow down her body and mind.
Basically, a fidget is a tool to help her focus—not a toy.
Second, work with your child to identify specific times she might need a fidget. For example, she might need it when she’s doing homework or needs to sit still in a movie theater.
Third, set up clear rules for how to use fidgets in your home, and communicate them to your child. If you’re unsure where to start, here are my “non-negotiables”:
Rule #1: Be mindful. Before you grab a fidget, think about whether you need it. If you don’t know, review rule #2.
Rule #2: You can only use a fidget to help with focus and attention or to calm down. Otherwise it will be taken away.
Rule #3: Don’t use a fidget if it distracts others or interferes with the work others are doing. If the fidget does distract others or interfere with their work, use a different fidget or strategy.
Rule #4: Every time you’re done with a fidget, put it back where it belongs. (In our house, we keep fidgets in a designated basket.)
If you want to try a fidget with your child, there are many options to choose from. Experiment to find what works best for your child. But I recommend that you don’t get a fidget that has a cute face or that looks like a toy. Your child needs to remember that fidgets are tools.
When you’re ready, you can set up a fidget basket (or other spot), print the rules, and put the rules in a place where your child can easily see and review them.
Nancy Hammill is the 2016 National Learning Disabilities Educator of the Year, awarded by Understood founding partner the Learning Disabilities Association of America. She has 20 years of experience as a classroom teacher, literacy specialist and learning therapist.
About Understood: The professionals who advise parents on Understood are all experts in their fields. They include educators, learning and attention specialists, physicians, psychologists, lawyers and more. They share a commitment to children with learning and attention issues.
As parents, we want our kids to want to have good behavior. They should want to behave because it’s the right thing to do, right? Yeah right. This is why all parents should use token economies.
Have you met a 3 year old with an innate desire to good for this world? It’s in there somewhere but at age 3, it’s more like threenager-ville. Little humans do what gets them what they want. They behavior in a certain way to achieve a certain outcome.
A threenager is likely to tantrum to get access to their favorite toy, TV show, candy, a left shoe they can see on the other side of the room — you name it. They are acting a certain way (tantrum) to achieve a certain outcome (getting whatever they want).
What can we do about this? Is there any way to teach them to behave?! Well, we can make sure they get what they want not by having a tantrum, but by engaging in desired behaviors.
We can use positive reinforcement in a more structured and specific way than just handing out praise and rewards willy-nilly.
The definition of a token economy is: a behavior change system consisting of three major components: (a) a specified list of target behaviors; (b) tokens or points that participants receive for emitting the target behaviors; and (c) a menu of backup reinforcer items.
Token economies can possibly take the form of sticker charts, chore charts, marble jars, etc. You need a physical token that your child can earn when they engage in the desired behavior. You do NOT need to go out and spend $50 at the nearest school supply store making a big fancy chart. You can draw 5 circles on a piece of paper. When they do the desired behavior, draw a check mark in the circle. Done. Grab that piece of junk mail off the kitchen counter and a half-eaten, I mean half-broken, crayon.
The next step is to define the behaviors. Again, you don’t need a big fancy dictionary. Just pick one to three behaviors that will earn the tokens. You need your Little to understand this so it can’t be a big grown up idea like ‘being responsible’ or ‘showing respect’. What does that mean to a Little? Be specific. You earn a token for: (1) following instructions without yelling; (2) eating 5 bites of every food Mom puts in front of you; and (3) putting on your shoes when instructed to.
Pick your battles. You may have a list of 20+ things your Little could stand to improve. I’m pretty sure I have a list of 20+ things to put myself on a token economy. Let’s prioritize and make it understandable by the kiddo.
Lastly — what can they earn with these tokens? You can give choices before earning and they can decide at the beginning or at the end. You can make a fancy menu of reinforcers — Chuck E Cheese is the perfect example of this. This many tickets = this super awesome toy.
Or, you can just say: get all the stickers, get 5 check marks, get 10 marbles and earn a fun activity. You can pick from: extra screen time, trip to the library, a new toy from the dollar spot, etc.
All of that in short form:
Tips:
One last thought: Someday you will find that things are going well and the token economy goes by the wayside. Remember it when a new problem behavior crops up and you are once again at your wit’s end. Start over. Pick new behaviors, new rewards, same system.
Don’t take my word for it — this is just the tip of the iceberg in behavior analytic research supporting token economies.
If you’re not a crafty person, you can always check out our reward chart here!
Citations:
Cooper, J., Heron, T., & Heward, W. (2007). Basic Concepts. In Applied Behavior Analysis(2nd ed., pp 560-567). Columbus: Pearson.
Kazdin, A. E. (Ed.). (1977). The token economy: A review and evaluation. Plenum Publishing Corporation.
Kazdin, A. E. (1982). The token economy: A decade later. Journal of Applied Behavior Analysis, 15(3), 431-445.
Skinner, B. F., Ferster, C. B., & Ferster, C. B. (1997). Schedules of reinforcement. Massachusetts: Copley Publishing Group.
Reitman, D., Murphy, M. A., Hupp, S. D., & O’Callaghan, P. M. (2004). Behavior change and perceptions of change: Evaluating the effectiveness of a token economy. Child & Family Behavior Therapy, 26(2), 17-36.
Leanne Page, M.Ed, BCBA has worked with kids with disabilities and their parents in a variety of settings for over 10 years. She has taught special education classes from kindergarden-grade 12, from self-contained to inclusion. Leanne has also managed a center providing ABA services to children in 1:1 and small group settings. She has extensive experience in school and teacher training, therapist training, parent training, and providing direct services to children and families in a center-based or in-home therapy setting. Since becoming a mom, Leanne has a new mission to share behavior analytic practices with a population she knows needs it- all moms of littles! Leanne does through her site parentingwithaba.org and through her book ‘Parenting with Science: Behavior Analysis Saves Mom’s Sanity”. You can contact her at lpagebcba@gmail.com.
When searching for a great restaurant or choosing a movie to go see, often we consider the personal reports of neighbors, work associates and friends. Why not? Their “testimonies” give us a quick method for judging the probability that a particular restaurant or movie will be a good investment. Of course, our friends and associates are not always right, but their testimonials serve as either shortcuts or as corroboration of other sources of information (e.g., restaurant or movie reviews). As such, they contribute to efficient decision-making about relatively low-stakes events. Here’s what you need to know about the pitfalls of testimonials.
We commonly see testimonials made by happy consumers presented by marketers of autism treatments. Indeed, testimonials are a standard feature on for pills, exercises, devices, interventions and therapies to potentially unwary consumers. Many testimonials take the form of simple, quoted statements (e.g., “The [marketed treatment] has had an amazing effect on my son!”). On the internet, video testimonials may be particularly compelling. Marketers know that the testimonials of some people, including attractive people, familiar celebrities, and people who may remind the potential consumer of him — or herself may be particularly effective. Adding pleasant theme music and using artful filming may complete the effect and increase the probability that families separate from their hard-earned money.
But, how should we use testimonial evidence in selecting potential autism treatments? When confronted with testimonials about possible autism treatments, it is recommended that families be especially cautious, particularly when the testimonials are the only source of support for the intervention. Marketers can find a few individuals who provide testimony that their product is effective, even when the product is wholly ineffective. This is because, as consumers, our opinions about the quality of a product — including perceived effectiveness — are colored by our previous experience, what we have been told by others, and our expectations. Furthermore, because human behavior — including the behavior of individuals with autism — is variable (i.e., changes across time), a treatment benefit may appear to exist, even when it does not exist at all.
For example, imagine that a marketer sold a “special” trampoline to 100 parents with the guarantee that daily use of the trampoline by their child would “open learning channels” and “promote language acquisition”. Of those 100 parents, it is reasonable to expect that at least a small number of them — perhaps 5 or 10% — may report that the product “seems to help”, even if the trampoline is not at all effective as an intervention in the way described by the marketer. A savvy marketer is watching for members of this small subgroup of consumers as their source of new testimonials!
And, how about all of the parents who purchased the trampoline and, subsequently recognized that it did not “open learning channels” and “promote language acquisition”? You can be assured that their opinions will not grace the marketer’s website, social media or glossy print advertisement. As a result, the marketers promote an illusion of product effectiveness where one may not exist at all.
It is for these reasons that parents and other consumers of autism “treatments” are cautioned to view testimonials skeptically. Testimonials are a wonderful way for business people to market merchandise but a poor way for families to determine true effectiveness of a treatment, device or intervention. Decisions regarding autism treatment are best guided by the scientific record, as supplied by trusted sources (e.g., a competent physician, psychologist or other autism expert). When it comes to making decisions about expensive autism interventions and the allocation of precious resources, persons with autism — and their families — deserve nothing less.
Cite This:
Mruzek, D. W. (2012). The pitfalls of testimonials. Science in Autism Treatment, 9(2), 12
About The Author
Daniel W. Mruzek, Ph.D., BCBA-D is an Associate Professor at the University of Rochester Medical Center (URMC), Division of Neurodevelopmental and Behavioral Pediatrics in western New York. He received his doctoral training in Psychology at the Ohio State University and is a former Program Director at the Groden Center in Providence, Rhode Island. Currently, he is an associate professor and serves as a clinician and consultant, training school teams and supporting families of children with autism and other developmental disabilities.
Mruzek coordinates his division’s psychology postdoctoral fellowship program in developmental disabilities and is an adjunct faculty member in the University of Rochester Warner School of Education. He is actively involved as a researcher on several externally funded autism intervention research studies and has authored and co-authored more than 20 peer-reviewed articles and book chapters on autism and other developmental disabilities. Dr. Mruzek is on the editorial board for the journals Focus on Autism and Other Developmental Disabilities, Behavior Analysis in Practice, Journal of Mental Health Research in Developmental Disabilities, and Intellectual and Developmental Disabilities. Dr. Mruzek is a former member of the Board of Directors of the Association for Science in Autism Treatment.
To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!
This is for all autism parents who’ve once heard “your child has autism.”
This comment from my experiences has came with different emotions for different people. Sadness of the uncertainty…Happiness about finally knowing what the diagnosis was… And often a neutral look where I cannot see any expression.
Over the years I’ve been contacted by thousands of parents asking for advice about their child’s autism diagnosis based on my experiences navigating the world growing up on the autism spectrum. During those times there have been many of these emotions I’ve seen from parent.
I was thinking about this recently when a mom reached out to me online telling me that her child was just diagnosed with autism. I asked her some preliminary questions such as “When were they diagnosed” and the follow up hit me when she said “my 2-year-old was diagnosed with autism today.”
This was one of the first times I ever talked to a parent the actual day of their child’s diagnosis. She told me more about how she was feeling right now. How her heart was breaking for her child. How she had seen signs for so long and how it had finally become confirmed.
Then she said I inspired her and I honestly didn’t know what to say. For her to contact me had left me at a loss for words. I took a few minutes to compose myself before following up. I than wrote this letter to the mom saying…
“Thank you for your kind words. Remember that you are never alone in this community and there are so many people who you can rely on. Many of them will have already walked similar roads to yours. Lean on these people. Listen to their stories and most importantly, cherish each and every single day that you have with your child. We are learning more about autism everyday to provide them with supports to see them progress.
I know today may have left you with so many different emotions. My parents had those same feelings when I was diagnosed with autism when I was 4. But my parents were able to get through that day and so will you. You will become a champion for your child and their greatest advocate they will ever have. I wish you nothing but the best for you and your child in the future.
Your friend, Kerry
She followed up hours later with gratitude and saying that she would look into the Tool Kit. To this day I’ve been thankful to this mom for sharing her story with me. Stories like hers is why I’m an advocate today. For those other parents out there whose child is diagnosed I hope this message I shared will be helpful for you as well. If I can ever be a resource you can message me on my Facebook Fan Page here.
My hope by sharing my successes and challenges on the spectrum is that I can provide our community with resources that they can use to help their children. That’s one of my hopes that won’t be changing anytime soon.
Kerry Magro is an award winning national speaker and best-selling author. Kerry has become a rolemodel in the disabled community. Non-verbal at 2.5 and diagnosed with autism at 4, Kerry has overcame countless obstacles to get to where he is today. A recent Masters graduate from Seton Hall University, he currently is CEO and Founder of KFM Making a Difference, a non-profit corporation focused on disability advocacy and housing.
Today Kerry travels the country sharing his story and telling our society to define their lives and their dreams in the best way they can. Of his highlights include publishing 2 best-selling books (Defining Autism From The Heart and Autism and Falling in Love) and working on the 2012 Motion Picture Joyful Noise. Kerry currently resides in New Jersey and works in New York as the Social Media Coordinator for Autism Speaks.
As the end of the school year approaches and students are let out on vacation, it’s important for us to consider the risks of elopement and overall neighborhood safety for children with autism. This month, we’re sharing a special feature from ASAT written by Kate Britton, EdD, BCBA and Bridget Taylor, PsyD, BCBA from Alpine Learning Group in New Jersey. Here, Kate and Bridget offer their guidelines on preventing potentially harmful situations and ensuring the safety of your children. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!
Elopement and Neighborhood Safety
Bridget Taylor, PsyD, BCBA and Kate Britton, EdD, BCBA
Alpine Learning Group, NJ
You are not alone. In fact, according to an online survey conducted by the National Autism Association in 2007, 92% of the parents indicated their child with autism was at risk of wandering away from his or her home or care provider. More recently, Kiely et. al. (2016) reported survey results of families of children with Autism Spectrum Disorders which found that 49% of those children had made an attempt to elope since the age of four. Additionally, 62% of parents of children who elope reported that this behavior prevents them from participating in activities away from home. Children with autism are especially vulnerable if they wander away from caregivers, as they may not be able to communicate that they are lost, take steps to ensure their safety such as identifying who in the community is safe vs. unsafe, asking for assistance, or stating important information such as their phone number. We hope the following guidelines can help you in preventing potentially harmful situations.
Develop a “safety / reaction plan”. Develop a family safety plan and practice that plan. In the event of your child wandering, time is most important and a quick, efficient response can make a difference. For example:
You can find a sample plan at the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration website (www.awaare.com). It would also be important for your child’s school or treatment center to implement an emergency plan for elopement.
Secure your home and yard. Secure your home and yard area so that your child is less likely to wander away. Sometimes standard locks are not enough as many children quickly learn how to operate standard locks on doors, windows and gates. Install locks on doors and gates in the yard that your child cannot open (consider location height and lock complexity). In addition, if your home has an alarm system, keep it set to go off whenever a door or window has been opened. If your home does not have an alarm, install an alarm system that signals when a door or window is opened. There are a variety of systems available, including high-tech and low-tech options. You may consider contacting a medical or educational provider, who can help identify resources to help obtain funding for such systems/equipment. Here are some suggested websites:
Install monitoring systems. Additionally, be sure to regularly monitor your child around the house by using a video monitoring system or a baby monitor that has video monitoring capability, such as:
Make the yard and pool area safe! If you have a pool or there is a pool nearby, ensure there is a locked fence surrounding the pool. You can also purchase a pool alarm for yours and/or your neighbors’ pools (e.g., www.poolguard.com). If your child goes into pools unsupervised, you can also use the Safety Turtle (www.safetyturtle.com), which is a wristband that locks securely around your child’s wrist and sounds an alarm if it becomes immersed in water.
Inform law enforcement. It is also critical to inform your police and fire departments that an individual with autism resides in your home. You can do this by calling your local non-emergency telephone number and asking personnel to note in the 911 database that someone with autism lives at your address. If there is ever an emergency, the emergency responders will know in advance that they need to respond accordingly. We also recommend giving local police and fire departments a picture of your child with your contact information on the back which can be helpful in identifying your child if s/he is ever brought to the station by someone else. Another suggestion would be to register with the National Child Identification Program (www.childidprogram.com). The program provides a kit that includes information on everything law enforcement would need in case of an emergency.
Educate neighbors. Another tip is to make sure your trusted neighbors are aware of your situation. Give them a picture along with some helpful information about your child (e.g., s/he is unable to speak, s/he responds to simple commands, s/he likes to swim so please keep your pool gate locked) and about autism in general. Also include your cell phone and home phone numbers, and ask them to call immediately in the event they ever see your child wandering away from the house or walking the street unaccompanied by an adult. Also, assess your child’s current level of communication. For example, can s/he answer social questions and be understood by novel listeners? Strangers will be most likely to ask your child, “What’s your name?” So it is important that your child can be understood by listeners who don’t know your child. If your child will not be understood or can’t relay enough information, you could use medical identification jewelry, such as a bracelet (e.g., www.medicalert.org).
Safety on vacations. Once your home is secure, vacations may still seem unrealistic. However, there are some steps you can take to allow your family to safely stay in a hotel or space other than the safe haven you have created. When planning for a vacation, really think about your vacation destination and determine the potential risks for your child with autism. Specifically, if your child has a history of wandering (especially towards pools or other swimming areas) you may want to ask for a room furthest from the pool area or without an ocean view-or maybe even choose a location that does not have a pool. When checking into the location, inform the hotel staff about your child and advise them that s/he will require supervision at all times and if they see him/her unsupervised to call you immediately. Also, consider using portable door alarms for hotel rooms, a child-locator systems and/or a global positioning systems (GPS). You can find low-tech tracking devices and high-tech devices online.
Teach skills to increase safety. Lastly, it’s essential to proactively teach your child skills that will increase his/her safety. Work with your child’s school or treatment program to include the important safety goals in your child’s individualized education plan (IEP) such as:
Check out www.awaare.org for sample letters to submit to your case manager and attach to your child’s IEP. Finally, it cannot be overstated that children with autism require very close supervision when in harm’s way. We hope you find these proactive and teaching suggestions helpful in minimizing your child’s risk.
Anderson, C., Law, J.K., Daniels, A., Rice, C., Mandell, D. Hagopian, L. & Law, P. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 870-877.
Kiely, B., Migdal, T. R., Vettam, S., Adesman, A. (2016). Prevalence and correlates of elopement in a nationally representative sample of children with developmental disabilities in the United States. PLoS ONE 11(2): e0148337, doi:101371/journal. Pone.0148337
Dr. Bridget A. Taylor, PsyD, BCBA is Co-founder and Executive Director of Alpine Learning Group and is Senior Clinical Advisor for Rethink. Dr. Taylor has specialized in the education and treatment of children with autism for the past twenty-five years. She holds a Doctorate of Psychology from Rutgers University, and received her Master’s degree in Early Childhood Special Education from Columbia University. She is a Board Certified Behavior Analyst and a Licensed Psychologist. She is an Associate Editor for the Journal of Applied Behavior Analysis and serves on the editorial board of Behavioral Interventions. She is a member of the Behavior Analyst Certification Board and serves on the Autism Advisory Group for the Cambridge Center for Behavioral Studies. Dr. Taylor also serves on the Scientific and Community Advisory Board for SPARK a new program at the Simon’s Foundation Autism Research Initiative. Dr. Taylor is active in the autism research community and has published numerous articles and book chapters on effective interventions for autism. She is a national and international presenter and serves in an advisory capacity for autism education and treatment programs both locally and abroad. She has been influential in the development of autism treatment centers both locally and in Italy, India, Canada, France, Australia and Kosovo. Dr. Taylor’s current research interests are in identifying innovative procedures to increase the observational learning repertoires of children with autism.
Kate E. Cerino Britton, EdD, BCBA is a Board Certified Behavior Analyst and a certified teacher of the handicapped, and has worked with individuals with autism since 1997. She is currently the Principal of the education program at Alpine Learning Group. She holds a Masters in Education Administration from Caldwell College and Special Education from Long Island University and a doctoral degree in Educational Leadership, Management, and Policy from Seton Hall University. She serves on the New Jersey Association for Behavior Analysis Board of Directors as the Secretary and Continuing Education Chair and has presented at national and international conferences on increasing socializing, problem solving, small groups and dyad instruction, promoting safety, and augmentative communication.
This week, we’re honored to feature an article by Edward Fenske, MAT, EdS, the former executive director of the Princeton Child Development Institute, who shares his critique on the U.S. Departments of Health and Human Services and Education’s joint statement on inclusive education for all children with disabilities. Ed’s extensive experience in delivering intervention to children with autism, support services to their families, and training and supervision to professional staff spans 39 years. His published works address home programming, language development, and early intervention.
Is Inclusive Education Right for My Child with Disabilities?
by Edward Fenske, MAT, EdS
Princeton Child Development Institute
On September 14, 2015 the U.S. Department of Health and Human Services and the U.S. Department of Education issued a joint policy statement recommending inclusive education for all children with disabilities begin during early childhood and continue into schools, places of employment, and the broader community. The policy includes numerous assertions about the educational benefits and legal foundation of inclusion and a lengthy list of supporting evidence. This paper examines some of these assertions, the supporting evidence, and comments on the departments’ recommendation.
Assertion: Children with disabilities, including those with the most significant disabilities and the highest needs, can make significant developmental and learning progress in inclusive settings.
Supporting Evidence: Green, Terry, & Gallagher (2014). This study compared the acquisition of literacy skills by 77 pre-school students with disabilities in inclusive classrooms with 77 non-disabled classmates. Skill acquisition was assessed using pre/post intervention scores on the Peabody Picture Vocabulary Test, Third Edition (Dunn & Dunn, 1997) and the Phonological Awareness Literacy Screening Prekindergarten (Invernizzi, Sullivan, Meier, & Swank, 2004). The results found that children with disabilities made significant gains that mirrored the progress of their typical classmates, although the achievement gap between the two groups remained. Participants had a variety of diagnoses (e.g., developmental delays, autism, pervasive developmental disorder-not otherwise specified, speech and language impairments, cognitive impairments, and Down syndrome). There were several requirements for participation in this study that would appear to severely limit conclusions. Participants with disabilities were functioning at social, cognitive, behavioral and linguistic levels to the extent that their Individual Education Program (IEP) teams recommended participation in language and literacy instruction in the general education classroom with typical peers-an indication that these skills were considered prerequisite to meaningful inclusion.
A further restriction for participation was that only data from children who were able to complete the tasks according to standardized administrative format were included in the study. It is therefore unclear whether all students with disabilities in these inclusive preschool classes made significant developmental and learning progress. The authors suggest that had the lower achieving students received explicit, small group or individual instruction, the achievement gap between typically developing students and children with disabilities may have been narrowed. We can therefore conclude that regular instruction provided in the inclusive preschool classes in this study was not sufficient for all students with disabilities. Furthermore, because the results were not separated by disability, it is not possible to determine whether there was a significant difference in learning across disabilities.
Assertion: Some studies have shown that children with disabilities who were in inclusive settings experienced greater cognitive and communication development than children with disabilities who were in separate settings, with this being particularly apparent among children with more significant disabilities.
Supporting Evidence: Rafferty, Piscitelli, & Boettcher (2003). This study described the progress in acquiring language skills and social competency of 96 preschoolers with disabilities attending a community-based program. Sixty-eight participants received instruction in inclusive classes and 28 attended segregated special education classes. Progress was assessed using pretest and posttest scores from the Preschool Language Scale-3 (Zimmerman, Steiner, & Pond, 1992) and the Social Skills Rating System (SSRS)–Teacher Version (Gresham & Elliott, 1990). Level of disability (i.e., “severely disabled” or “not severe”) was determined by scores on the Wechsler Preschool and Primary Scale of Intelligence (WPPSI-R), but the authors did not provide any information about the participants’ specific clinical diagnoses. Posttest scores were comparable for “not severe” students in both class types. Children with “severe” disabilities in inclusive classes had higher posttest scores in language development and social skills than their peers in segregated classes, but had higher rates of problem behavior. The extent to which problem behavior interfered with learning for both typical children and those with disabilities was not addressed. Problem behavior, such as tantrums, aggression, stereotypy, self-injury, property destruction and defiance; is displayed by some children with disabilities. These behaviors have very different implications for preschool-aged children than for older children. In this writer’s experience, severe problem behavior is extremely resistant to change when not successfully treated during preschool years and may ultimately result in more restrictive academic, vocational and residential placement during adolescence and adulthood. The significance of any academic gains by children with disabilities in inclusive settings should be carefully weighed against the long-term implications of unchecked maladaptive behavior.