Managing a Home-Based ABA Program

This month’s ASAT feature comes to us from Beverley Sharpe, a founding member and Director of Families for Early Autism Treatment of B.C. 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!

We have a home-based intervention ABA program for our son. What are some helpful suggestions for managing the steady stream of professionals in our home?

Answered by Beverley Sharpe, parent of a 22- year-old daughter with autism

Opening your home to therapists, behavioral consultants, and other providers is part of effective treatment for your child. However, it can sometimes be difficult to supervise a home that doubles as a work environment and the many opportunities and challenges that come with that arrangement. I am humbled by the high level of energy and dedication my therapy teams, past and present, have demonstrated within my own child’s program. Teamwork and collaboration are crucial elements to make home therapy effective. The following are some helpful tips I’ve learned over the years to help make home team coordination more manageable.

Be a Good Host/Hostess

I have struggled at times to balance being a “boss” and a “hostess” within my home. At the start of a shift, I recommend a five-minute exchange to greet and debrief the provider. No matter what job one has, people deserve to be acknowledged and greeted. I typically put on the tea pot or provide a cold drink, say hello, debrief, then let the provider begin the shift. With a new provider, I allow more time for him or her to set up materials, reinforcers, and data sheets before bringing in my child.

Define Your Expectations of Those Who Work with Your Child

An agency that provides home-based intervention will have a written job description or list of expectations for employees. If you are not working with an agency but are, instead, hiring and training your own team, please take the time to put important expectations in writing. Being on time, completing data sheets, communicating about behaviors observed, being prepared for shifts (including bringing appropriate task and reinforcer materials), and respecting other family members are examples of appropriate expectations.

Get Feedback from Staff

Over time I learned to explain to the team that it is hard for me to be both a boss and a friend. I truly did want to be a good listener, and at the same time a good manager of the team. I enjoyed the one-on-one time at the beginning of a shift with each provider and would ask, “How are you?” and “How are you finding the work with my child?” Their answers inspired me to make changes to the program, address issues with the behavioral consultant, and work on team building during team meetings that became more frequent when my daughter’s inappropriate behaviors became challenging.

When conflicts of any kind arise, talk about it and clear the air so that tensions or misunderstandings do not fester. Speaking about problems factually, face-to-face, with a hot cup of tea or coffee is a strategy that I have used. Also, I would make sure my daughter was engaged in an activity before starting the conversation. Remember, you can control yourself, your communication style, and the environment when you address an issue. Being respectful, honest and kind are great ways to be sure you have done your best to address issues. In my experience, new directions have come from allowing members of the team to share their perspective with you. Your child’s quality of life depends on effective intervention, and a home that is warm and inviting to the hard working providers who share your vision will help your son realize his fullest potential.

Keep in Touch with Former Providers

Email has enabled me to keep in touch with some of the former providers who have worked so hard with my child. One of Allison’s former providers is now professionally trained in hairdressing. Every year before Christmas this provider comes to our home to gift Allison a Christmas haircut! I love the expression, “Friends are like stars, you can’t always see them, but you know they are there.” I think of all past and present providers as being Allison’s stars, not all providers will maintain relationships with the family. The reality of employing people in your home is that some will choose, for reasons of their own, not to stay in touch with you or your child. Don’t take it personally. Life happens to everyone! Also, keep in mind that agencies may have policies forbidding contact outside of the current professional relationship.

Acknowledge Other Siblings in the Household

Shortly after putting together my first therapy team in 1997, I realized I had to address the issue of acknowledging siblings in the household. My daughter, Allison, who was receiving services in the home, was 3 years old at the time. She had a big brother, Jackson, who was 5 years old. Jackson came to think of it as normal that he would have to move from one room to another when Allison’s therapy sessions were in progress. He was always good-natured about this. I wanted to keep big brother Jackson involved with sessions, as appropriate, to help him feel more involved, instead of just frequently displaced. For example, turn-taking was a wonderful way to involve Jackson, as was the “Go Find” program.

I also reminded providers to acknowledge Allison’s brother whenever possible. I reminded them that a simple and genuine greeting will go a long way with his cooperation in the house! This helped to make Jackson’s cooperation more likely when he was asked to move to another room during a therapy session. Also, Jackson was taught to ask a provider, “What can I do to help my sister today?” when a provider started her shift. This simple act facilitated Jackson’s knowledge of his sister’s abilities, and gave him a lot of pride when he was able to tell his friends that he was helping his sister to learn! Big brother Jackson then became a big help during sessions by moving and sharing his play toys, games and puzzles and allowing space for his sister and her therapy team. Always remember, siblings are part of the household that supports the learning of the child!

Recognize That Housekeeping Is Important

Remember, your home is a provider’s work environment. I do my best to clean and tidy the therapy area before tackling any other room in the house on cleaning days. I also do a quick check of the bathroom area before sessions, as everyone appreciates a clean washroom! I make sure therapy notes, bulletins, communiqués are all neatly on their clipboards. I also make sure that my child is clean and presentable for the shift. Finally, I make sure that there is an “outing fund” with money for community activities. If my child worked towards a reward of an outing to the zoo, Dollar Store, or movie theatre, I wouldn’t want the lack of funds to delay the delivery of that reinforcer. Make sure your team knows to keep receipts for outings which are approved by the behavioral consultant and yourself. Also, remember to reimburse bus fare or gas money for a provider. Agencies will likely already have a policy in place for travel expenses as well.

Be a Good Employer, Which Means Advocating for Your Staff

Therapy time does not equate to babysitting. I had to correct a few well-intentioned neighbors who referred to my providers as babysitters. When my child is in the community, grocery shopping, at a gymnasium, or at work experience, these hardworking men and women are providing therapy, not just watching or transporting my child. Providers are important members of your child’s medically necessary treatment team. Correct misconceptions by family and friends along the way. Many family and friends may not be familiar with this type of therapy or treatment and may need some educating about the purpose and format of a home-based intervention based on applied behavior analysis. This education can help preserve the dignity and respect of your child, your team, and the discipline of applied behavior analysis for autism.

Stay in the Home During Therapy Time

For insurance purposes, many agencies require that a provider not be left alone in your home. Providers work in your home and deserve a safe and respectful environment. This means that a parent must remain in the home during a therapy session. This can be helpful for routine questions and support as well as in case of any emergencies.

Set Clear Expectations Around Cell Phone Use

The abundance of cell phones means that providers and families can be in real-time communication for shift or program issues relating to the child. However, they can also be a distraction from active treatment and supervision of my child. This has occasioned another hiring criteria for being on my child’s treatment team: Cell phone use for anything other than communication about the child, on their shift, is not acceptable. Cell phone games, texting, social media, and other social messaging are not acceptable. Even the ten seconds (as stated by one provider) it takes to text back to a friend means you are disengaged, not observing, and not “on” with your client – my child. Cell phone use expectations must be made clear from the very beginning and reiterated as needed.

Gift Giving

Holiday time was always a tough time at my home. In British Columbia, there was zero funding for autism treatment when I started my daughter’s program in 1997. I wanted to give tokens of appreciation to my daughter’s home treatment team for the holiday season. My budget was beyond tight, but homemade cards were always appreciated. One family I knew put together a cookbook of favorite home recipes for their home team; another family made a huge holiday dinner, in conjunction with a team meeting, to thank their team. There is always a way to say thank you to your team that is respectful of one’s budget.

Please note that many agencies and ethical guidelines for behavior analysts have strict policies around gift exchange and it is often not permitted. Check with your agency and your providers if you have any questions around this topic. And please do not be offended if a member of your team is not able to accept a gift.

Use Different Cultures and Celebrations as Learning Opportunities

We took the opportunity to learn about different religious holidays when one of our providers shared that she was Jewish. This was a wonderful learning opportunity for everyone on the team. We even made a card for the start of the Jewish New Year – Rosh Hashanah. Over the years, my daughter’s providers brought the wonderful gifts of sharing their religious holidays, culture, and favorite recipes that have enhanced our lives!

Making birthday cards for therapy team members gave my child the opportunity to use pencil and coloring skills, printing skills, and to sing the “Happy Birthday” song. All of these skills took a long time for acquisition. However, after all the hard work, to see my daughter use her skills to put a smile on her providers’ faces was priceless. To hear my child use her voice (she was non-verbal for the first 6 years of her life), and to hear her sing Happy Birthday – well, it is a win-win situation!

With a therapy team, it is a wonderful opportunity to have a simple celebration for each of the several birthdays throughout the year. My child learned that birthdays are for others as well as for herself. This learning extended to teaching big brother Jackson that every time we celebrate a birthday, he does not always get a present!

As our programs progressed, our behavior consultant added a cooking and baking program to help include both children in all household birthday celebrations for family members and members of the treatment team. The beauty of a cooking program was that skills, such as: counting, measuring, mixing, pouring, baking, decorating with icing, and washing and putting away dishes, were all “taught” in a fun way. This was a very detailed program with the huge reinforcer of getting a tasty item to eat at the end of completing a recipe!

In Summary

Managing an ABA treatment team in your home can be challenging but can be rewarding as well. There are many things you can do to help the team work well together and be effective in providing your child with the services he or she needs and deserves. Remember, it’s a learning process for all!

Please use the following format to cite this article:

Sharpe, B. (2017). Clinical corner: Managing a home-based ABA program. Science in Autism Treatment, 14(3), 17-20.


About The Author 

Beverley Sharpe is a founding member and Director of Families for Early Autism Treatment of B.C. (FEATBC). Bev’s daughter Allison was diagnosed with autism twenty years ago and Bev became an advocate for effective autism treatment. She was a member of the Legal Steering committee for the Canadian landmark decisions (Auton and Hewko) regarding autism treatment. Bev participates in new parent intake, political lobbying, fundraising, and speaks regularly with parents regarding advocacy in the school system. She also helps new parents access funding for autism treatment.

 

 

The Function Wheels

This month’s ASAT feature is a review of the Function Wheels, one of our Different Roads exclusives! 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!

Reviewed by
Jen Cote, M.Ed.
David Celiberti, PhD, BCBA-D

Individuals with autism often demonstrate challenging behaviors in home, school, and community settings and, as a result, their service providers develop behavioral interventions to address these challenges. The effectiveness of behavioral interventions is predicated on consistency across people and settings. Aside from inconsistent implementation, one of the primary reasons for the failure of interventions targeting the reduction of challenging behavior is that the intervention does not adequately address the underlying function of the behavior. Behavior intervention plans can be conceptualized in one of three ways:

  • Functionally relevant in which the intervention reflects the underlying function of the challenging behavior;
  • Functionally irrelevant in which the intervention does notreflect the underlying function of the challenging behavior; and
  • Functionally contraindicated in which the intervention includes components that may actually serve to reinforce the challenging behavior (e.g., a time out procedure for a behavior maintained by escape).

Function Wheels is a quick, easy-to-use resource that enables individuals working with students to better understand the underlying function of a student’s behavior and its direct implications for behavioral intervention. Function Wheels is a systematic approach that sequentially guides users through the process of identifying the function of a problem behavior, collecting data on the occurrences of problem behavior, developing a hypothesis based on the pattern of data collected, and implementing research-based interventions for each function. The purpose of the guide is to offer assistance when writing behavior intervention plans, with specific examples laid out in a step-by-step format.

Prior to providing a summary of the contents of this guide, we wanted to share a few cautionary statements with our readers. The Function Wheels is not intended to replace a more in-depth Functional Behavior Assessment (FBA) or Functional Analysis (FA) (Amerson, 2014). According to the author, “While Function Wheels is a handy and useful behavioral tool in the management of behavior, careful considerations should also be given when a more-in-depth and formal FBA or FA is warranted. In such cases, information using Function Wheels can be incorporated into the FBA or FA descriptive information”. (A Guide to Behavioral Interventions, pg. 8). Though this guide provides conceptually systematic interventions, the author further recommends that if a multi-variable treatment package is used, which may be required for certain individuals, multiple treatments should be implemented in consultation with a Board Certified Behavior Analyst (BCBA) or licensed professional who possesses the clinical experience to design, implement, monitor, and/or modify the treatment package accordingly (Amerson, 2014).

As with any tool, the effectiveness is directly connected to the integrity and consistency demonstrated during implementation by the user. For this reason, users must be able to objectively assess their own ability and others’ ability to follow each component of the intervention, and determine if they or the other persons have the skills necessary to effectively implement the intervention techniques. All users should be prepared to seek additional support and training if needed, or request consultation with a Board Certified Behavior Analyst or a licensed professional who possesses the clinical experience to train and support others in the implementation of intervention.

Function Wheels Components

The Function Wheels system consists of separate components, meant to work as a whole, to help teachers proactively identify why problem behavior occurs so they can then follow the research-based interventions and strategies provided. The Function Wheels kit includes:

Guide to Behavioral Interventions:

Provides research-based interventions and features conceptually systematic interventions that can be adapted and used as a resource to help identify specific management strategies. The first four sections of the Guide to Behavioral Interventions focus on the four main behavioral functions; behaviors with the function used to obtain attention, behaviors with the function to escape, behaviors with the function to gain access to preferred items, and behaviors maintained by automatic reinforcement. In addition to providing the user with a general knowledge of what the behaviors may look like, the authors also provide examples of how the behaviors may be displayed during specific environmental conditions or situations for different age ranges. When developing a behavior intervention plan, it is critical to match the intervention to the function of the behavior, or reason the behavior is being exhibited. If the function of the behavior is not determined, the intervention implemented could be ineffective or counterproductive.

This guide provides the user with intervention strategies for each function of problem behavior. Each intervention discussed throughout the guide has a brief overview of the history of the intervention and examples of the interventions being implemented. Intervention strategies for the four function areas include, but are not limited to: non-contingent reinforcement/attention, time-out, behavior contract/ contingency contracting, reinforcement of successive approximations, contingent sensory access/breaks, sensory extinction, non-contingent reinforcement, and differential reinforcement of other behaviors. Research provided for the interventions ranges from 1969 to 2013. As the author mentioned, this guide is not intended to list all possible interventions, only to provide a sample of interventions available. As research in this field continues to grow, the research basis for the underlying techniques can be expanded upon to reflect the advancements that have been made in the field.

Procedural steps are written out under the intervention. The procedural steps provide the reader with the sequence in which the intervention should be implemented. These procedures include data collection, environmental setup, and reinforcement and consequence dependent on behavioral response. In addition, the author also includes a Key Notes section, which provides the user with additional knowledge of directions/instructions to be considered when implementing the particular intervention.

User Guide:
The User Guide describes how to use the Function Wheels system, step-by-step. Before determining any functions or implementing any interventions, it is essential for the user to feel comfortable with their abilities, and have a solid understanding of all the pieces to this kit. As mentioned previously, it is noted that when looking at the User Guide, the sequence of the steps would lead one to believe that Writing Descriptive Notes (step 5) would take place after the function has been calculated (step 4). In order to determine the function of a behavior, one must fully evaluate the description of the behavior, the antecedent (triggering event) and the consequence (maintaining event). This would be followed by the identification of the function.

Function Wheel:
A double-sided wheel feature eight research-based conditions. One side of the wheel displays antecedent conditions and the other side displays consequent conditions. Turning the wheel allows each user to align an environmental event with the function(s) of the behavior. The smaller, inner wheel represents the presence of a behavior (attention, escape, tangible, automatic), while the larger, outer wheel represents the environmental event, or condition, that triggered and/or maintained the behavior. The function wheel is designed to be a straightforward way of determining the function behind a problem behavior; however, in order to prevent any confusion, it would be helpful to differentiate the side of the wheel designed to help identify the trigger from the side designed to help identify the maintaining event.

Student Screening Sheet: 
Provides a template for tracking each incident of the problem behavior. The Student Screening Sheet allows for up to 15 behavioral events to be recorded. Fifteen recordings across at least three observations are recommended to provide an adequate sample to help identify the function of the problem behavior. The Student Screening Sheet has three distinct sections: Description of Observable Behavior, Functional Categories, and Descriptive Notes (detailed information about the antecedent and consequent condition for each observable behavior recorded). Though the Student Screening Sheet offers its user a simplistic way to track data on behavior, the arrangement of the screening tool could mislead one to believe the function of the behavior is determined prior to examining antecedent variable and consequent/maintaining variable. When in fact, the function of a behavior should not be determined prior to the examination of all variables.

Intervention Wheels:
The four Intervention Wheels are Attention, Escape, Tangible, and Automatic. The specific Intervention Wheeldirectly related to the identified function provides recommended research-based treatments across 6 intervention areas. In addition to providing the user with research-based treatments across the intervention areas, the authors have placed ‘Facts to Remember’ on the front of each Intervention Wheel. The facts offer broad tips that are beneficial when working with any behavior despite the function, but it may be more beneficial to connect function. Although this guide provides conceptually systematic interventions, the author further recommends that if a multi-variable treatment package is used, which may be required for certain individuals, multiple treatments are implemented in consultation with a Board Certified Behavior Analyst or licensed professional who possesses the clinical experience to design, implement, monitor, and/or modify the treatment package accordingly (Amerson, 2014).

Utilizing the Function Wheels System

The Function Wheels system can be used two ways, the Function Wheels Brief Method or the Function Wheels Extended Method. Both methods can be utilized by any individual working with students. The Function Wheels Brief Method includes collecting data using the Student Screening Sheet to capture functions of behaviors as they occur, then based on the information obtained, proceeding to the corresponding Intervention Wheel to read about interventions which could minimize the occurrence of problem behavior and reduce any unwanted, inadvertent, or unintentional reinforcement of the problem behavior. A limitation of the Brief Method noted by the author, involves careful consideration of the tentative hypothesis formed about the function as it is not verified prior to intervention when the Brief Method is employed.

The second method, Function Wheels Extended Method utilizes the same framework but with more detail. Time is taken to meet as a team to define the target behavior and discuss data collection. Following the data collection process, the team meets again to discuss and analyze the variables associated with the unwanted problem behavior, determine the behavior’s function, and what potential interventions can be employed. The difference between the two methods is the time spent collecting data, which during the Extended Method takes place over several sessions or days. This will allow for confirmation or provide the team with an opportunity to test the hypothesis regarding the function(s) of the student’s challenging behavior and more importantly, to engage in a validation process prior to the start of any intervention.

Conclusion

The Function Wheels kit is an easy-to-use resource that provides service providers who have a basic knowledge of learning principles and the communicative intent of challenging behavior and its functions with a way to quickly determine appropriate interventions for problem behaviors based on the function of the behavior. For effective implementation of behavior intervention plans, it is essential for the user to have clinical knowledge and experience, or access to working directly with a more qualified professional. A concern with the utilization of this kit with those who are less experienced or knowledgeable would be the counterproductive effects it can have on students who are already struggling. Secondly, the research basis underlying techniques includes many citations from decades ago, which may give the reader the impression that no other research has been published related to that intervention and that the field has not advanced. Nonetheless, the responsible use of the Function Wheels kit may aide in the quick and effective identification of functions and a comprehensive array of interventions that would benefit many students. We applaud the author for compiling this resource in such an innovative and meaningful manner. For more information, please visit the website for Different Roads to Learning.

 

Please use the following format to cite this article:

Cote, J., & Celiberti, D. (2016). Resource reviews: Review of “The Function Wheels” Science in Autism Treatment, 13(4), 34-37.


About The Authors

Jennifer Cote, M.Ed.

Jennifer received an undergraduate degree in Mental Health and Human Services from the University of Maine Augusta in 2010. Working at a residential facility with adolescents diagnosed with autism sparked an interest in this population. In 2011 she switched her field to Special Education and earned her teaching certification, and completed a Master’s Degree through University of Southern Maine in Special Education in 2017.  After becoming interested in Applied Behavior Analysis Jennifer is currently working toward completing the requirements to sit for the BCBA exam. She enjoys enjoy working with children and watching them grow and develop. She continues to teach Special Education.

David Celiberti, PhD, BCBA-D

David 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.

Explaining Decision to Use Science-based Autism Treatments

This month’s ASAT feature comes to us from David Celiberti, PhD, BCBA-D and Pamela Feliciano, PhD. 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!

 

“I have decided to rely on science-based treatments for my child with autism. Now, how do I explain this to friends and relatives who insist I try something “cutting edge?”

 

We certainly respect any individual’s right to his or her own opinion, and certainly for parents of children with autism to make decisions for their child regarding treatment; however, we believe that scientific evidence and the use of objective data should guide treatment options for all diseases and conditions, and autism is no exception. The late Senator Patrick Moynihan eloquently said, “Everyone is entitled to their own opinions, but not their own facts.” It is simply a matter of fact that theories, hypotheses, and testimonials do not provide adequate information to guide treatment decisions.

When friends or acquaintances hear about our experiences with autism, quite often the first thing they ask is, “What is your opinion of vaccines?” despite the retraction of Andrew Wakefield’s article by the Lancet (a very rare occurrence by this highly reputable journal). Sadly, the vaccine debate has long distracted the autism community from important discussions such as how best to help children already diagnosed with autism realize their fullest potential and live a happy and meaningful life.

In an ideal world, all treatment providers would make a commitment to science and evidence-based practices, and all members of the journalism community would make a commitment to responsible journalism. Until these ideals become the norm, those who do understand science-based treatments must do what they can to inform and educate others about the benefits of scientifically validated treatment, and the use of data to guide decision-making when assessing the benefits of any and all treatments.

Although applied behavior analysis is the treatment for autism with the most scientific support, we are rarely ever asked our opinion of this therapy, or if it is effective. Instead, every few months or so, some “new” treatment (or “repackaging” of a known treatment) will gain the attention of consumers. Given the large numbers of television reports, newspaper articles, blogs, and websites putting forth “miracle cures” and “breakthroughs,” it is not surprising that parents frequently receive advice and suggestions from extended family members, neighbors, and co-workers, particularly after a news item is broadcast, printed, or otherwise disseminated. Many of these individuals have the best intentions and are eager to share what they believe is “cutting edge” information about autism. In other cases, the advice is sometimes provided in a manner that comes across as critical of what you are choosing to do or not do for your child (i.e., it may be implied that you are not doing enough as a parent to help your child with autism).

If the information is offered by a more casual acquaintance, it may be best to simply thank him or her for their interest and concern and move on; however, such a strategy may not fare as well with individuals with whom you have a closer relationship. In these cases, you might consider sharing the following:

     • There are dozens of “miracle cures” and “breakthroughs” (i.e., pseudoscience) for autism that manage to receive widespread media attention, even if they have not been proven effective. In fact, there are over 500 treatments touted to address autism;

     • It is important to be critical of all available information, regardless of the source, and to recognize that not all information on the Internet is reliable and accurate;

     • There is a large body of scientific research published in peer-reviewed journals and carried out by hundreds of researchers that supports the choices that you have made;

     • Numerous task forces (some are listed at the end) have looked closely and objectively at the available research and have determined that the vast majority of autism treatments lack any scientific support and, in fact, some may be harmful;

     • Autism treatment is a multi-million dollar industry, and many treatment proponents rely heavily on sensationalism and extraordinary claims to “sell” their products;

     • Interventions that are actually shown to be the most effective often receive the least amount of media attention; and

     • For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice (you may even consider drawing an analogy to a medical condition of particular interest to the person providing the advice).

Of course, you may also consider addressing this matter proactively. This would involve clarifying your choices and commitment to science-based treatment to more significant family members and friends on your terms and at your convenience. It may be helpful to view this tactic as a series of tiny conversations. You may even consider sharing links to websites such as the Association for Science in Autism Treatment (ASAT), which will help your family members and friends separate the wheat from the chaff. We would like to draw your attention to a few sections of ASAT’s website that bear relevance to this discussion.

     • Learn more about specific treatments

     • Summaries of published research articles

     • Making sense of autism treatments: Weighing the evidence

     • Recommendations of expert panels and task forces

Finally, ASAT’s newsletter, Science in Autism Treatment, is a free publication, so encourage your friends and family to subscribe.

It is our hope that the information shared above may help your friends and family better understand the role that science should play in the treatment of autism, the need for objective data to drive decision making, how to better identify pseudoscience, and perhaps most importantly, why parents must be such savvy consumers.


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.

Pamela Feliciano, PhD, joined the Simons Foundation in 2013 and serves as the scientific director of SPARK (Simons Foundation Powering Autism Research through Knowledge) and is a senior scientist at SFARI. SPARK is a SFARI initiative that seeks to accelerate autism research through a vibrant and informative online platform (SPARKforAutism.org). Previously, Feliciano worked as a senior editor at Nature Genetics, where she was responsible for managing the peer review process of research publications in all areas of genetics. Feliciano holds a B.S. from Cornell University, an M.S. from New York University and a Ph.D. in developmental biology from Stanford University. Feliciano is also the mother of an adolescent boy with autism spectrum disorder.

How to Manage the Impact of Child with a Disability on Siblings

This month’s ASAT feature comes to us from Mary Jane Weiss, Ph.D., BCBA-D,LABA and Nicole Pearson, BCBA-D. 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!

 

I am a mother of three children, one of whom has autism and requires a tremendous amount of time and care. I worry about how this is impacting my other children, both of whom are a few years older and are very aware of how our family has changed as a result of their sibling’s diagnosis. Do you have any advice on how to best address this with them?

Answered by: Mary Jane Weiss, Ph.D., BCBA-D,LABA
Professor of Education and Director of Programs in Autism and Applied Behavior Analysis, Endicott College and
Nicole Pearson, BCBA-D
Founder, West Side Behavioral Associates

Having a child with autism spectrum disorder inevitably impacts the entire family. From the stress and anxiety that accompanies the initial diagnosis to the time-intensive nature of navigating treatment options and providers, raising a child with autism presents unique challenges for parents. It can also present challenges for siblings as the sibling relationship is inevitably different from that of typical siblings. And while many of these differences can be positive and rewarding, it’s important for parents to be aware of the needs of siblings so that they can provide meaningful guidance and support.

While children of younger ages may not be fully aware of their sibling’s disability, they likely detect parental stress, perceive inequities in the amount of time and attention given and struggle with a sense of disruption in overall family life (Feiges & Weiss, 2004; Smith & Elder, 2010). As children age and their awareness grows, siblings may experience adjustment difficulties. These difficulties are influenced by such factors as sibling age and gender as well as family size. Siblings closer in age to the child with autism, and those who are younger and have not yet developed effective coping strategies can be more affected. However, as a parent, there are many strategies you can take to support sibling coping and adjustment.

Foster a supportive environment at home: Siblings are often aware of how different their experiences are from that of others, especially their friends. As a result, they may feel many emotions, including fear, anger, embarrassment, resentment and guilt, among others. Encouraging an environment of open communication allows the sibling to safely express negative emotions and frustrations. Listen to and reassure your child that it’s okay to have these feelings, and offer suggestions on how to work through them together. Doing so also helps with positive coping and establishes a foundation for good familial communication and problem solving.

Further, as siblings become aware of such differences, they will likely look to their parents and family members for guidance. Thus, parent coping and adjustment play an important role in sibling adjustment. As such, it is important for parents to be cognizant of the impact their actions, behaviors and decisions will have on all of their children.

Ensure your child understands what autism is: Parents sometimes overestimate their typical child’s understanding of autism as the child may be able to explain what it is without fully comprehending it. They may also pick up on information they overhear but likely have more questions than answers. Making sure that siblings have developmentally-appropriate information will help reduce their fears and misconceptions (Glasberg, 2000; Harris & Glasberg, 2003). These explanations can go a long way in influencing how siblings view and interact with their sibling with autism and how well they are able to explain autism to their peers.

When speaking with children under age nine, parents should keep explanations brief and frame the sibling with autism’s deficits in the context of having not yet learned or mastered particular skills, such as playing with others or communicating in ways that other children do. For example, saying, “Your sister learns a bit differently than you and me, so she needs extra help” or “Your brother may not be able to talk but we are teaching him other ways to show us what he wants to say.”

As children age, explanations can be more involved, such as sharing that autism is a problem in the brain and that it presents differently in each child. Depending on the extent of the child with autism’s behavioral problems, it may be necessary to help the sibling understand why they’re occurring and their role in behavioral escalations. Such escalations can be scary, embarrassing and disruptive for typical siblings so providing them with clear explanations can help alleviate some of these feelings. Regardless of the children’s age, parents should offer reassurance (especially of safety) to typical siblings, and convey love and acceptance of everyone in the family.

From a timing perspective, starting to discuss autism with siblings at an early age can be helpful, especially before they begin school or start having friends over. That way, they can be prepared with information about how to explain what may appear to be usual or different behavior in their sibling with autism. There are several free online resource guides available:

• Autism Speaks offers a “Siblings Guide to Autism” toolkit designed for siblings ages 6-12 that parents and siblings can read together to learn more about autism and facilitate conversation about it
• Organization for Autism Research’s “Kit for Kids” offers an illustrated booklet for elementary and middle school students, called “What’s up with Nick?” and “Autism, my sibling, and me”

Promote meaningful relationships between siblings: While every sibling relationship is special, the communication and socialization deficits inherent in autism diagnoses can make sibling bonding more difficult. Creating opportunities for younger children to play together or helping older siblings to find common interests, even if it’s as simple as doing a puzzle together or playing a video game, can go a long way in increasing the quality and quantity of interactions and ultimately building sibling bonds.
Another way to foster meaningful relationships between siblings is to teach your typical children how to be mentors to their younger sibling with autism. Doing so can be very fulfilling for siblings and promote feelings of self-efficacy and nurturing. It also creates opportunities for siblings to engage with one another socially and have positive interactions with their sibling with autism. Prior to starting, make sure that your typical children understand their sibling with autism’s skills, preferences and interests and start with easy tasks to ensure success. Such tasks might include modeling how your typical siblings can engage in simple toy play or teach their sibling with autism a basic daily living skill like putting on a coat or how to wash hands. Other skills that can be useful to teach include:

• how to get your sibling with autism’s attention,
• how to provide praise and reinforcement when he does well,
• how to assist him when he cannot do something,
• how to help him stop playing and clean up.

Build in one-on-one time for each sibling and foster individuality: Siblings are inevitably affected by the inordinate amount of time, energy and resources that are spent caring for their sibling with autism. Further, activities common in typical family life such as all spending time together, going to a movie or on vacation may be more limited. While inequities exist in all families, they are intensified in a family who has a child with autism. And if typical siblings feel dissatisfied with these inequities, their relationship with their sibling with autism is negatively impacted (Rivers & Stoneman, 2008). To help minimize the impact of these inequities, it’s important to make time for one-on-one interaction with each sibling. While this can seem difficult in the throes of managing busy schedules and the demands of therapies, carving out even a small amount of time where you’re giving your child your undivided attention can go a long way. So whether its running errands together or going for pizza, make time to check-in with your other children and let them know that even though they may not always get as much attention as their sibling, they’re loved and cared for equally.

And while having a child with autism is a 24/7 commitment, helping to foster distinct roles and interests in each child can further reduce the stress that siblings may feel. Encourage siblings to get involved in sports, clubs or other community activities where they can develop relationships with peers and just have fun. Doing so allows them the time and space to be their own person and establish a sense of individuality not defined by their sibling with autism (OAR, 2014). Ultimately, it may also make siblings more available to enjoy spending time with their sibling with autism.

Consider additional sources of support: Finally, sibling groups can be a helpful source of support. They provide siblings the chance to meet and speak with others who are going through similar experiences and can give them accurate and age-appropriate information about autism. Often these groups can help reduce fear and misconceptions among siblings as well as the feelings of isolation many experience. If a support group isn’t readily available within your children’s school or your community, consider looking at some of the following resources for more information:

Sibling Support Project – offers more than 475 community support programs, called SibShops, for younger siblings of children with special needs.
Online resources: There are several online communities for siblings, both teens and adults:
     o      SibTeen, an online Facebook group for teen siblings: https://www.siblingsupport.org/connect-with-others-sibs/meeting_other_sibs_online/sibteen
     o     SibNet online forum for adults: https://www.siblingsupport.org/connect-with-others-sibs/meeting_other_sibs_online/sibnet

The Organization for Autism Research (OAR) has also developed the “Autism Sibling Support Initiative” offering helpful resource guides for young children, teens and parents.

While much is often said about the challenges faced by siblings of people with autism, there are also substantial positive outcomes. Most siblings who reflect on the experience in adulthood attribute their high levels of compassion, tolerance, patience, and concern for others to having had a sibling with special needs. Furthermore, many of them develop a sense of mission and enter helping professions.

There is no universal description of the ways in which this role changes the lives of siblings of children with autism. And every sibling pair is on their own unique journey. But while this is a role that is not chosen by the sibling, it is a role that most siblings truly embrace. Parents can help their typically developing children by creating an environment of transparency and openness about autism and about issues arising in the family associated with it. They can help siblings find effective ways to interact with their brother or sister with autism, and can foster mentorship roles for them with their sibling. Parents can also ensure that every child in the family gets needed attention and permission to pursue their own dreams. Finally, they can remember that most siblings of children with autism end up being compassionate human beings who treasure their sibling and who note both the struggles and the strength that the family experienced as a result of being touched by autism.

Note: This submission was adapted from Drs. Weiss and Pearson’s book chapter, “Working effectively with families of children with autism spectrum disorders: understanding family experience and teaching skills that make a difference” which appeared in “School success for kids with autism.”

References:
Feiges, L.S., & Weiss, M.J. (2004). Sibling stories: Growing up with a brother or sister on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company
Glasberg, B.A. (2000). The development of siblings’ understanding of autism and related disorders. Journal of Autism and Developmental Disorders, 30, 143-156.
Harris, S.L., & Glasberg, B.A. (2003). Siblings of children with autism. Bethesda, MD: Woodbine House.
Organization for Autism Research (OAR). (2014). Brothers, sisters and autism: A parent’s guide to supporting siblings. Retrieved from: http://www.researchautism.org/family/familysupport/documents/OAR_SiblingResource_Parents_2015.pdf
Rivers, J. W., & Stoneman, Z. (2008). Child temperaments, differential parenting, and the sibling relationships of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1740-1750.
Smith, L. O., & Elder, J. H. (2010). Siblings and family environments of persons with autism spectrum disorder: A review of the literature. Journal of Child and Adolescent Psychiatry Nursing, 23, 189-195.
Weiss, M. J., & Pearson, N. K. (2012). Working effectively with families of children with autism spectrum disorders: Understanding family experience and teaching skills that make a difference. A. L. Egel, K. C. Holman, & C. H. Barthold (Eds.). School success for kids with autism. Waco, TX: Prufrock Press.

Please use the following format to cite this article:
Weiss, M. J. (2016). Clinical Corner: How to Manage the Impact of Child With a Disability on Siblings. Science in Autism Treatment, 13(2), 22-26.


Mary Jane Weiss, Ph.D., BCBA-D, LABA is a Professor at Endicott College, where she directs the Master’s Program in ABA and Autism and is a mentoring faculty member in the Doctoral program. She also does research at Melmark. Dr. Weiss has worked in the field of ABA and Autism for over 30 years. She received her Ph.D. in Clinical Psychology from Rutgers University in 1990 and she became a Board Certified Behavior Analyst in 2000. She previously worked for 16 years at the Douglass Developmental Disabilities Center at Rutgers University, where she served as Director of Research and Training and as Clinical Director. Her clinical and research interests center on defining best practice ABA techniques, exploring ways to enhance the ethical conduct of practitioners, evaluating the impact of ABA in learners with autism, teaching social skills to learners with autism, training staff to be optimally effective at instruction, and maximizing family members’ expertise and adaptation. She serves on the Scientific Council of the Organization for Autism Research, is on the Professional Advisory Board of Autism New Jersey, is a regular reviewer for a variety of professional journals, and is a frequent member of service committees for the Behavior Analyst Certification Board. She is also a Past President of the Autism Special Interest Group of the Association for Behavior Analysis International, a former member of the Board of the Association for Professional Behavior Analysts, and a former Vice President of the Board of Trustees for Autism New Jersey.

Dr. Nicole Pearson is a licensed psychologist and Board Certified Behavior Analyst (BCBA-D) who has specialized in working with individuals with autism and other developmental disabilities for almost a decade. Dr. Pearson received her initial training in Applied Behavior Analysis (ABA) at the Alpine Learning Group and went on to work in a number of other public and private educational settings, including NYC Autism Charter School where she served as Director of Education. She has also worked with autism programs internationally in Kenya and the Maldives. Most recently, Dr. Pearson served as a Behavioral Psychologist at St. Mary’s Hospital for Children, working with children with complex medical needs and training clinical staff in treatment protocols. She holds Masters and Doctoral degrees in Psychology from Fairleigh Dickinson University and a BS in Business Administration from Villanova University.

Setting Up the Classroom to Optimize Learning Opportunities and Effective Instruction

This month’s ASAT feature comes to us from Melissa Taylor, BCaBA. 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!

I recently accepted my first teaching position.  It’s a new classroom for the district serving students with autism. I have lots of materials, but nothing is organized or set up in my classroom. What are some tips to set up and organize the classroom to optimize learning opportunities and effective instruction?

Congratulations on your first teaching position! This is a common question for new teachers. When we talk about classroom organization, there are several things to take into account. Good classroom organization effectively makes use of space and barriers, has accessible materials for instruction and data collection, and facilitates efficient time management. It is critical that when you set up your classroom, you review the needs of your individual students as well as make sure to address the core characteristics of autism. You probably already know that many of your students will present with deficits in social interactions and communication, including challenges with requesting items from adults and peers. It will be important to create an environment that makes it necessary for students to interact frequently with other people to increase communication opportunities.  Once the environment is conducive to optimizing instruction, the instructors can implement effect behavioral strategies to teach desired behaviors.

Organizing the Space

Seating. When organizing a space, we want to make sure that the seating arrangement will allow students to access the materials needed for activities and respond accurately to instruction. For younger students, make sure the chairs allow their feet to touch the floor. Likewise, older students should be able to sit up straight with feet on the floor and legs at approximately 90-degree angle. Try to arrange seating so that you have space for group, as well as individual sessions. Also, allow enough room that additional support staff can sit behind students to make prompting less intrusive (e.g., sitting behind student and using physical guidance to help them learn the expected motor responses during the, “Wheels on the Bus” song).

Pathways for transitions. The furniture should be set up in a way that enables smooth transitions from one area to another without traffic jams. Walking between areas will be easier if there are not large dividers or barriers that slow down transitioning. Having open spaces and clear pathways between defined areas could also allow instructors to move quickly to different areas of the classroom if there is an episode of problem behavior or an unexpected opportunity to support a social interaction.

Defining areas. Some instructors find that using dividers helps clearly separate sections of the classroom. Keep in mind that every area should be open enough that the classroom teacher is able to see every student and classroom assistant. This will allow the teacher opportunities to provide immediate feedback to staff on interactions with students and to offer frequent student praise.  Try to avoid tall dividers that make it impossible to see into the other areas and dividers that are easily knocked over. Shelving units, desks, carpets, and tables can create more natural space dividers that can help define the areas. Keep in mind the function and purpose of each classroom area, and make sure that the instructional materials needed are in the area and replaced as needed. For example, if students are going to be required to request items during circle time, those items should be easy for the instructor to reach during group rather than requiring the instructor to get up, leave the group and look in a cabinet for items.  

Putting away preferred items. Children, including those with autism, are often good at finding and gaining access to the things they like without the help of other people. By keeping items out of reach, in clear containers that are difficult to open, and on high shelves, you can create new requesting opportunities and make communication with adults more valuable to students. Resalable plastic storage bags, totes, bins, shelving units, and aprons with pockets may all be useful to make it more likely that the students will need to request help from others to access the items they want or need. If the student already has a valuable item, you have lost an opportunity for communication.  By restricting access to valuable items, teachers can prompt requests for specific items and deliver items to students. Furthermore, when delivering the item, the teacher becomes more valuable to the student, who learns the significance of communicating. When these types of natural communication trials with preferred items occur in areas where instruction will occur, it becomes more likely that students will approach instructors and instructional areas. One important consideration with using such materials that in some cases, direct visibility to highly preferred items can be distracting to students or result in attempts to retrieve items outside of appropriate or scheduled times. In such instances, evaluate the situation and determine whether moving the student’s seat so that it is not facing those items or moving the items themselves will address the issue.

Organizing Materials

Materials for data collection. In preparing materials for instruction, we want to make sure that all instructors have easy access to necessary materials such as data collection tools and sheets. These items should be able to be easily accessed at any point of the day, so that instructors are more likely to capture all opportunities of the behaviors they are tracking. When data are recorded immediately following student behavior it is more likely to be accurate. Clipboards that have pockets attached to them are good for storing writing utensils, timers and additional data sheets. Student item lists, teaching stimuli, and data sheets can be kept in a cart with drawers to make it easily accessible during teaching. When collecting any type of data that require instructors to count the number of occurrences of a behavior, instructors can use clickers attached to their clothing with carabiner clips for convenience. Blank student specific datasheets can be carried with the student on clipboards, kept in a drawer on a cart, or hung on bulletin boards in centers where instructional activities occur.

Materials for instruction. Pencil cases or small craft boxes help organize small materials such as pieces of edibles, small toys, pencils, highlighters, picture cards, visual schedules or index cards for instruction.  For larger instructional items such as toys needed for teaching imitation skills, items needed for simply following direction tasks, or items needed to teach daily living skills, boxes, rolling carts with larger drawers, or labeled shelves can be used to organize materials by student or goal areas.

Consider posting wall cues, table/desk cue cards, or other reminders in places where staff will easily see them. These cues can be helpful to guide instruction without the need to flip through pages in consultation notes or program books to reference procedures. Types of items to post include specific teaching protocols and prompt hierarchies, reinforcement schedule reminders, behavior management strategies, toilet training schedules, reminders of how to teach play skills and student to student requesting, or other items that you want to generalize from one classroom area to another. Cue cards, wall cues, or student data sheets with specific targets listed can also guide instructor presentation during less structured teaching opportunities.  For example, if the student has been working on labeling the picture of gloves, and during circle time the teacher is dressing a weather bear, the instructor can ask that student to label the weather bear’s gloves. Additional targets to be posted for staff could include specific peer-to-peer requests or interactions (e.g., give item to peer, accept item from peer), specific motor skills (e.g., copying a line, opening a container), self-help skills (e.g., putting on shoes, washing hands), and other activities.  This allows for easy implementation of strategies such as natural environment teaching and incidental teaching.  Another point is to consider limiting other “wall clutter” that often serves as highly distracting stimuli to students. When possible, keep to salient items such as a classroom schedule, current student work or points of study (e.g., pictures of alphabet) but don’t feel the need to cover every available space with something!

Classroom Schedule

Time is valuable, and students with autism do not have time to waste. It is important to make the most of your day by having many opportunities to practice all targeted skills. Having a classroom schedule that allows for enough instructional time to make significant progress is critical. When creating a classroom schedule, make sure to address the who, when, what, and where questions. In other words, it should be easy to see who is working with a student at any given time as well as what skill they are working on and where they are working on that skill (e.g., red table, art table, hallway, etc.). Assigning student names to specific instructors can save valuable time during an emergency situation (student elopes, fire emergency).  Avoid unnecessary large chunks of non-academic or unstructured times. What each student will be working on should vary based on assessments conducted in the classroom. Instructors should consider posting the schedule on a wall, centrally located and large enough that all team members can see it. However, if you have many students and paraeducators going in and out of the room, you may consider having a master calendar but printing out individual copies for each staff member.  When you have a master schedule that is easy to change when students and staff are absent will cut down on unnecessary talk about who is with specific students and what they should be working on. Additionally, color-coding by students or staff will allow for staff member or administrators to easily follow from across the room or with a quick glance. Staff should be assigned to students at all time.  If a student is engaged in independent work, having a staff member still assigned to that child will help everyone know who is tracking data or responsible if an emergency occurs. 

If you take all of these suggestions into consideration when you begin planning your classroom, you will be well on your journey to make a big difference in the outcomes of your students. An organized classroom allows teachers to focus on effective instructional strategies and behavior management strategies that are individualized to each child and not waste valuable time locating materials, guiding staff behaviors, and planning groups.  We wish you well in your new teaching position and in the years to come.


About The Author

Melissa Taylor, BCaBA is a Consultant on the Autism Initiative for the Pennsylvania Training and Technical Assistance Network. Her current position focuses on training educators on the principles and implementation of behavior analysis within classroom settings. In addition, Melissa provides in-home behavior consultation to children and adults with autism. Currently, she serves as the Sponsorship Coordinator for the Association for Science in Autism Treatment.   

 

Teaching Safety Skills to Adolescents

SafetyWebslide11.png

This month’s ASAT feature comes to us from Shannon Wilkinson, M.ADS, BCBA. 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!

I am a Special Education Teacher at the high school level. A young man with autism is transitioning to my caseload from our middle school. Although there is much talk about “safety skills” amongst my colleagues, I would like to target this skill area effectively and comprehensively. Any suggestions?

Safety skills are important for learners with autism and should be addressed comprehensively over the course of the learner’s schooling and across the lifespan. The type of safety skills taught at any given time will vary depending on the learner’s age and functioning level. For example, younger learners can be taught to walk appropriately with an adult so they do not run into the street while older learners can be taught to cross the street independently. Regardless of age, safety skills should be included on the learner’s Individualized Education Plan (IEP) and reflect the goals of the individual and their families. In addition, data collection on the targeted skills is essential to ensure the learner is acquiring the skill and that the skill maintains over time.

An effective method to teach safety skills is Behavioral Skills Training (BST). BST is a comprehensive teaching method which includes delivering instructions to the learner, modeling the correct response, rehearsing the correct response in both pretend and more naturalistic environments, and delivering feedback to the participant regarding their actions. If the learner is having difficulty acquiring the skill, an additional teaching component known as In Situ Training (IST) can be added. In IST, the trainer provides immediate and direct training in the learner’s environment and allows for additional practice of the skill. Within the literature, BST and IST have been shown to be effective for teaching a wide range of safety skills such as abduction prevention skills (Beck & Miltenberger, 2009; Gunby, Carr & LeBlanc, 2010; Johnson et al., 2006) and how to seek assistance when lost (Pan-Skadden et al., 2009).

There are a number of safety skills that that could be targeted for an adolescent with autism. Targeting those that also increase independence should be a priority if appropriate, based on the adolescent’s level of functioning. Teaching him to use a cell phone is one such skill, as it can be used to improve his safety and overall independence (Hoch, Taylor, & Rodriguez, 2009; Taber, Alberto, Seltzer & Hughes, 2003). First, you will want to ensure the learner has the basic skills associated with cell phone use including: answering the phone, following directions on the phone, answering questions on the phone and negotiating all of the mechanisms associated with initiating a call. Once these basic skills are mastered, specific safety skills involving the phone can be taught. For example, a learner can be taught to answer his cell phone and provide a description of his location in the event he is separated from his caregiver or group. He could also be taught to follow instructions to seek assistance from a community member if lost (Hoch, Taylor, & Rodriguez, 2009; Taylor, Hughes, Richard, Hoch & Coello, 2004) or to call a trusted adult.

A major safety concern for most parents is abduction. Although abduction may be more likely with a young child, adolescents with autism should still be taught to identify “safe people” such as police officers, fire fighters and security guards, in the community. Many learners with autism are not able to distinguish safe or familiar people from unsafe or unfamiliar people. As a result, they cannot determine whom they can speak to or make a request for help. Learners can first learn to identify safe people, such as those noted above, in pictures. Once they can reliably do so, they should be taught what to do if a stranger approaches them. Multiple scenarios should be practiced so the learner becomes familiar with potential lures such as a stranger offering candy to get in a car or telling the student that his mom told the stranger to pick him up. Behavioral skills training and In Situ Training may be beneficial in teaching these skills (Beck & Miltenberger, 2009; Gunby, Carr & Leblanc, 2010; Mechling, 2008). In this scenario, the learner would first be provided instructions on what to do in each stranger situation. The learner should then model the correct response. If he does so successfully, a mock scenario can then be set up whereby a confederate approaches the learner and the learner has the opportunity to demonstrate the skills he has learned (i.e., do not go with the stranger, run away and tell an adult). If the learner performs the correct actions, he receives praise. If the learner does not demonstrate the correct response, the instructor immediately provides him with additional training.

Additional safety skills to target could include:

  • navigating and using community resources appropriately and independently;
  • exiting a car and crossing a parking lot or busy street safely;
  • responding appropriately in emergency situations such as a fire or earthquake;
  • addressing potential household hazards such as responding safely to cleaning chemicals, using appliances properly, or answering the doorbell when it rings;
  • identifying a need to dial 911;
  • using basic first aid procedures;
  • interacting appropriately with pets and other animals;
  • using the internet safely; and
  • managing teasing and bullying

 

There are many others that can be addressed based on the learner, his individualized goals and his future educational, vocational and residential placements. Involving the learner’s parents in the planning process will help you to identify which safety skills are most important and relevant for the individual to learn, particularly if the parents have specific concerns or if there has been a history of unsafe behavior. Finally, as you go through this program planning process, it’s helpful to keep in mind that the essential goal in teaching these skills is to promote greater independence by ensuring the learner has the tools he needs to be safe and to protect himself in his environment.

References

Beck, K. V., & Miltenberger, R. (2009). Evaluation of a commercially available program and in situ training by parents to teach abduction-prevention skills to children. Journal of Applied Behavior Analysis, 42, 761-772.

Gunby, K. V., Carr, J. E., & Leblanc, L. A. (2010). Teaching abduction-prevention skills to children with autism. Journal of Applied Behavior Analysis, 43, 107-112.

Hoch, H., Taylor, B. A., & Rodriguez, A. (2009). Teaching teenagers with autism to answer cell phones and seek assistance when lost. Behavior Analysis in Practice, 2, 14-20.

Mechling, L. C. (2008). Thirty year review of safety skill instruction for persons with intellectual disabilities. Education and Training in Developmental Disabilities, 43, 311-323.

Pan-Skadden, J., Wilder, D. A., Sparling, J., Stevenson, E., Donaldson, J., Postma, N., et al.(2009). The use of behavioral skills training and in-situ training to teach children to solicit help when lost: A preliminary investigation. Education and Treatment of Children, 32, 359-370.

Taber, T. A., Alberto, P. A., Seltzer, A., & Hughes, M. (2003). Obtaining assistance when lost in the community using cell phones. Research and Practice for Persons with Severe Disabilities, 28, 105-116.

Taylor, B. A., Hughes, C. E., Richard, E., Hoch, H., & Rodriquez-Coello, A. (2004). Teaching teenagers with autism to seek assistance when lost. Journal of Applied Behavior Analysis, 37, 79-82.


About The Author 

Shannon Wilkinson, M.ADS, BCBA is a Supervising Therapist with TRE-ADD program at Surrey Place Centre in Toronto, which is a comprehensive day treatment program that provides services for children and youth with autism and related developmental disorders and their families. Shannon has worked in the field of autism for 13 years, starting as an Instructor Therapist. She is particularly passionate about working with adolescents and has taught many vocational and life skills over the years. Shannon has a Masters in Applied Disability Studies from Brock University and is a Board Certified Behaviour Analyst.

Annotated Resources: Bullying

October is National Bullying Prevention Month! In this month’s ASAT feature, Sunbul Rai, MSc, BCBA, Renee Wozniak, PhD, BCBA-D, and Rachel L. Liebert have collected some amazing resources to address the issue of bullying. 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!

Bullying is an unfortunate reality for many individuals with (and without) autism spectrum disorder (ASD). This list of annotated resources has been created to serve as a helpful reference for individuals with ASD, parents, clinicians, and educators alike. Included are resources that provide realistic strategies around both preventing bullying and addressing existing bullying. We hope that this information will support informed decisions and assist you in taking a strong stand against bullying.

bullying

1.  National Autism Association (2015). A & S bullying: 5 things parents can do – www.autismsafety.org/bullying-tips.php The National Autism Association (NAA, 2015) provides a brief and practical list of five steps parents can take to address and prevent bullying in school, including 1) preparing the team, 2) addressing bullying with specific goals in the Individualized Education Plan (IEP), 3) preparing your child, 4) monitoring your child for signs of being bullied and 5) using the complaint process. At the outset, the authors stress the need to clarify the school district’s policies on bullying as a first step to prepare the team. Next, NAA suggests politely making it clear that you will be involved in helping the team to avoid your child’s victimization, and clearly communicating with teachers, administrators, the school board, and possibly the child’s peers to provide information on the child’s specific strengths and challenges, autism spectrum disorder, and the problem of bullying. In the IEP, NAA suggests addressing bullying by including social skills and self-advocacy goals, applicable accommodations, a familiarization plan, and specific peer support. To prepare your child, it is suggested to talk to him/her about appropriate friendships and about bullying, obtain social skills training if possible, and to help him/her get organized and oriented to the school in advance. Next, NAA suggests monitoring your child consistently for signs of being bullied by visiting the school often and keeping the lines of communication open with your child and teachers. If the complaint process is necessary, be persistent while avoiding being overly emotional; begin with informal written resolutions, moving to filing a complaint if necessary, while keeping in mind your rights under “The Individualized with Disabilities Education Act” (IDEA, 2004). “A & S Bullying: 5 Things Parents Can Do” is a quick read that may help parents take some simple first steps in addressing and preventing bullying issues for their child.

2.  Autism Speaks (2015). Combating bullyingwww.autismspeaks.org/family-services/bullying “Combating Bullying” is a compilation of information surrounding bullying of individuals with ASD, incorporating links to a variety of Internet and other resources. Some of the links include the Interactive Autism Network (IAN)’s study on bullying experiences of children on the autism spectrum, a Special Needs Anti-Bullying Toolkit, the trailer for and information on Bully: A Documentary, links to almost 20 books, 10 websites, and to other resources including a DVD and a list of signs to look out for that your child might be being bullied. The compilation addresses bullying of individuals with ASD and Asperger’s Syndrome, and includes information on bullying in schools, cyber bullying, and more. Information may be useful for parents, caregivers, educators, school administrators, individuals with ASD, and peers/friends of individuals with ASD.

3.  Autism Intervention Research Network on Behavioral Health (2013) – Remaking Recess www.airbnetwork.org/remaking.asp The Autism Intervention Research Network on Behavioral Health provides access to a booklet on a social skills intervention called “Remaking Recess” for use in the school setting. The booklet provides a treatment overview (helping children with ASD learn to engage with peers in the school setting) and a brief summary of playground engagement states (solitary, onlooker, parallel, parallel aware, joint engagement, games with rules) followed by specific strategies that can be implemented at recess time. Intervention strategies are included for a variety of situations, including 1) transitioning to an engaging activity and setting up, 2) providing popular developmentally-appropriate games and activities, 3) in-vivo social skills instruction, 4) facilitating peer conversations, 5) playing games, 6) sustaining engagement, 6) fading out of an activity and 7) a quick guide to boosting peer engagement. One of the main purposes of the intervention is to prevent bullying by aiming to improve the social inclusion of elementary-aged children with ASD by means of facilitated interactions with peers. “Remaking Recess” may be useful for individuals in educational settings who wish to take proactive steps to reduce bullying.

4.  Committee for Children (2015). Second step bullying prevention unit – www.cfchildren.org/second-step/research The Committee for Children is a non-profit organization that uses education with the aim of preventing bullying, child abuse and youth violence. The Second Step Bullying Prevention Unit is an initiative through The Committee for Children and is aimed at reducing bullying and peer victimization. The website includes information on the Second Step Bullying Prevention Unit Program as well as program outcomes. It comprises an article on the role of social-emotional learning (SEL) in bullying prevention efforts and highlights the importance of specific social and emotional skills taught in SEL programs, which include 1) empathy, 2) emotion management, 3) social problem solving, and 4) social competence. The website indicates that the implementation of the Second Step Bullying Prevention Unit can help empower schools to prevent and reduce bullying. It may be useful for professionals and parents alike to help them better understand specific skills that need to be taught to children to help prevent bullying.

5.  AbilityPath.org: Support for Parents of Children with Special Needs (2014). Bullying – www.abilitypath.org/areas-of-development/learning–schools/bullying/ AbilityPath.Org provides many bullying resources on its website and one of its highlights is the comprehensive report on bullying which focuses on supporting parents of children with special needs. The report is entitled “Walk a Mile in Their Shoes: Bullying and the Child with Special Needs” and emphasizes the “silent epidemic” of bullying that children with special needs face on a daily basis. It has several sections, which include: an overview of the report, testimonials from parents and children, targets: children with special needs, statistics, signs of being bullied, cyber bullying, teachable moments, the IEP, the law, the experts, the anti-bully program, and the call to action. Furthermore, it has several parent toolkits along with a teacher toolkit to help caregivers identify signs of bullying, and it highlights proactive steps that can be taken to protect a child with special needs. The information is also geared towards cyber bullying, which is bullying that can be conducted through the use of technology and social media sites. For example, one of the parent toolkits stresses the importance of protecting a child with special needs by teaching the child not to reveal personal information online, limiting online time, reviewing security settings on the computer and so forth. “Walk a Mile in Their Shoes: Bullying and the Child with Special Needs” promotes awareness, provides resources on bullying and its impact, and may be useful for parents, caregivers, teachers, administrators and other professionals working with children with special needs.

6.  PBIS: Positive Behavioral Interventions & Supports (2015). Bully prevention in SWPBS – www.pbis.org/school/bully-prevention PBIS: Positive Behavioral Interventions & Supports (2015) provides bully prevention manuals for the elementary, middle, and high school levels. The manuals are meant as a resource for the school setting and aim to provide students with the tools needed to be free of bullying through the use of school-wide positive behavior interventions and supports. The program described in the manual is divided into six lessons and focuses on the “stop/walk/talk procedure” for gossip, inappropriate remarks, and cyber bullying. The stop/walk/talk procedure involves physical and verbal components with examples of when these components can be used appropriately and when they should not be implemented. The manual emphasizes teaching the skill, followed by practice and roleplaying for a variety of scenarios. The lessons are easy to read and are ready for implementation in the classroom setting. PBIS’s bully prevention manuals may be useful for teachers or other educators in school and similar settings.

7.  National School Climate Center. (2015). Educating minds and hearts… because the three R’s are not enough – http://schoolclimate.org/ The National School Climate Center is an organization that utilizes relevant research to establish and distribute guidelines to encourage acceptance and safety in schools. The Center offers professional development programs for educators, parents, and after-school supervisors to better understand and promote children’s social and emotional wellness and communication. Their website offers guidelines to help educators and parents establish and maintain safe, comfortable schools and homes by understanding social and emotional learning. The “Bully Prevention” section of the website includes a toolkit entitled “The Breaking the Bully-Victim-Bystander Cycle Tool Kit.” This resource may be useful for educators who wish to create a positive school climate.

8.  The Bully Project (2015)http://www.thebullyproject.com/ The Bully Project is a website that aims to take action against bullying. It focuses on a documentary about children who were bullied during the 2009-2010 academic year and how their parents supported them and modeled “upstander” rather than “bystander” behavior. The website invites users to share their own stories and host or organize screenings of the film to raise awareness. The site also includes tools (including DVDs and toolkits that can be purchased) for students, parents, advocates, and educators, with a section devoted to individuals with special needs. The tools for educators are also available in Spanish. The “Roadmap to Building a Caring and Respectful School Community” includes work that was produced with the assistance of the Making Caring Common Initiative at the Harvard Graduate School of Education. The website also provides interested individuals a platform in which they can take action by joining regional anti-bully project teams. This resource may be useful for those looking to increase awareness and to take steps toward reducing bullying.

9.  Pacer’s National Bullying Prevention Center (2015). The end of bullying begins with you – www.pacer.org/bullying/ Pacer’s National Bullying Prevention Center’s website was developed for children and teenagers to be part of a social cause to end bullying. It includes a section dedicated to students with disabilities with legal information and template letters for parents to send to their child’s school to serve as notification of a bullying situation and a written record of having done so. The website also directs children and teenagers to other helpful resources including KidsAgainstBullying.org and TeensAgainstBullying.org. Ample information is provided about National Bullying Prevention Month (October) including a brief history, opportunities to register for events, key points to make should you wish to give a presentation, and directions to request a governor’s proclamation. Educator toolkits are available under the resources tab, and they include classroom toolkits, community toolkits, student-created toolkits, and activities for youth. Additionally, there is a guide for planning school events, and a peer advocacy guide. This website may be useful for children and teenagers who want to make a difference and provides tangible resources to reduce bullying.

10.  U.S. Department of Health & Human Services (2015). Stopbullying.gov – http://stopbullying.gov This government website provides a wealth of resources across a variety of areas, in both English and Spanish. An array of topics is covered with related subtopics and links. General topics and subtopics include:

  • What is Bullying – definition, roles kids play, and related matters (e.g., harassment, teen dating violence, peer conflict and more)
  • Cyber Bullying – what it is, how to prevent it, how to report it, and risk factors
  • Who is at Risk – warning signs, effects, and considerations for specific groups (including bullying and youth with disabilities and special health needs)
  • Preventing Bullying – how to talk about it, prevention at school, working in the community, and a training center which includes videos, reading modules, research and statistics, training manuals, toolkits, user guides and additional resources
  • Responding to Bullying – stopping it on the spot, finding out what happened, supporting the kids involved, and being more than a bystander
  • Get Help Now – includes steps to take to resolve a range of bullying situations

Cite this:
Rai, S., Wozniak, R. & Liebert, R. L. (2015). Annotated resources: Bullying. Science in Autism Treatment, 12(4), 23-27.

Bullying can be complex and the Association for Science in Autism Treatment has other resources available for help with this, as well. Please check out the links below to learn more!

1. Clinical Corner: Preventing and Addressing Bullying, Lori Ernsperger, Ph.D., BCBA-D
https://www.asatonline.org/research-treatment/clinical-corner/bullying/

2. Clinical Corner: Teaching Safety Skills to Adolescents, Shannon Wilkinson, MADS, BCaBA
https://www.asatonline.org/for-parents/education/lifespan/teaching-safety-skills-to-adolescents/


About The Authors 

Sunbul Rai, M.Sc, is a Board Certified Behavior Analyst® with a background in education and psychology.  She has extensive experience working with individuals on the Autism Spectrum in a variety of settings across Canada.  Sunbul serves as the Practicum Consultant for the University of New Brunswick’s Autism Intervention Training Program.  She is also the founder of the ABA Little Tots Program at Autism Services, the first intensive behavioural intervention (IBI) program in Saskatchewan.  She is committed to enhancing the quality of life of individuals with Autism so that they can reach their full and utmost potential.

Renee Wozniak, PhD, BCBA-D, joined the ASAT Board of Directors in 2016. Prior to serving as a Board Member, Renée was a part of ASAT’s Externship, where she assumed the roles of Media Watch Co-Coordinator and Media Watch Lead. Renée received her Ph.D. in Special Education, focusing on Autism Spectrum Disorders (ASD) and Applied Behavior Analysis (ABA), from Arizona State University. She has worked in the fields of ASD and ABA in a variety of capacities since 1998, serving in public schools as a special education teacher, behavior intervention teacher specialist and district-wide autism trainer, and in clinical and home-based ABA programs as a research assistant, clinical/behavior interventionist, and program supervisor. Renée has trained families, therapists, teachers, teacher candidates, paraprofessionals, administrators, and others working with individuals with autism, and has instructed master’s level ABA, ASD, research and special education courses. She currently serves in the roles of faculty and subject matter expert in Capella University’s Applied Behavior Analysis program. Renée is passionate about helping individuals with autism and their families by supporting and disseminating scientific research in autism treatment.

Rachel Liebert was an extern at ASAT from 2015 to 2016 while she was studying psychology at Barnard College of Columbia University.  She is currently a second-year law student at Fordham University and plans to pursue a career in public policy and child welfare.

How do you figure out what motivates your students?

 

This month’s ASAT feature comes to us from Niall Toner, MA, BCBA of the New York State Institute for Basic Research in Developmental Disabilities. 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!

MotivateEmail

I am a special education teacher working with students with autism. At times I find it difficult to figure out what motivates my students and what they’re interested in. Can you make some suggestions about the best way to do this?

This is an excellent question and one that highlights a challenge often experienced not only by teachers but also by family members of individuals with autism. We know that the interests and preferences of individuals with and without autism vary significantly over time. Also, we know that effective teaching of skills and behavior change are predicated upon the timely use of powerful reinforcement (i.e., positive consequences of skilled behavior that motivate and strengthen that behavior). As discussed below, identifying an individual’s preferences is a critical first step in teaching new skills because these preferences often lead to the identification of powerful reinforcers; but how we do this can be easier said than done, especially when the learner has a limited communication repertoire or very individualized interests. The best way to identify preferences is through ongoing preference assessments.

The value of preference assessments

Since many individuals with autism may have difficulty identifying and communicating their preferences directly, we must consider alternative methods of obtaining this information. At the onset, it is important to keep in mind that what may be rewarding or reinforcing for one individual may not be for another. For example, one child may enjoy bubble play, crackers or a particular cause-and-effect toy while a classmate may find one or more of these uninteresting or even unpleasant. Furthermore, an individual’s preferences change across time. For example, an individual may have demonstrated little use for music at age 11, but she may demonstrate a keen interest in music at age 13.

Preference assessments provide a systematic, data-based approach to evaluating a host of potential interests (e.g., food, toys, activities) for an individual. Although preference assessments do require time and effort up front, their use can decrease the time and energy, required to change behavior in the long run. Research indicates that when caregivers use a presumed preference that, in fact, is not the learner’s actual preference, valuable time, energy and resources are lost (Cooper, Heron, & Heward, 2006).

Types of Preference Assessments

Preference assessment can be conducted in three distinct ways: (1) Interviews and Formal Surveys; (2) Direct observation; and (3) Systematic assessment.

Interviews are a straightforward technique that can be used to gather information quickly. They involve obtaining information from the individual’s parents, siblings, friends, and teachers (and
from the individual, if communicative) by asking both open-ended and comparison questions. Examples of open-ended questions include: “What does he like to do?” “What are his favorite foods?” and “Where does he like to go when he has free time?” Comparison questions might include: “Which does he like better, cookies or crackers?” and “What would he rather do, go for a walk or eat chips?” Resultant information is then compiled in a list and identified items and activities can be piloted out as possible reinforcers.

Formal surveys can also be used to guide these discussions. One widely used survey is the Reinforcement Assessment for Individuals with Severe Disabilities (RAISD; Fisher, Piazza, Bowman, & Amari, 1996). This interview-based survey gathers information about potential reinforcers across a variety of domains (e.g., leisure, food, sounds, smells), and ranks them in order of preference. It should be noted that, although simple and time-efficient, using interviews alone can result in incomplete or inaccurate information. In fact, some studies have shown that, for the same individual, staff interviews did not reveal the same information as using a survey (Parsons & Reid, 1990; Winsor, Piche, & Locke, 1994).

Direct observation involves giving the individual free access to items and/or activities that he or she may like (presumed preferences) and recording the amount of time the individual engages with them. The more time spent with an item or activity, the stronger the presumed preference. In addition, positive affect while engaged with these items and activities could be noted (e.g., smiling, laughing). During these observations, no demands or restrictions are placed on the individual, and the items are never removed. These direct observations can be conducted in an environment enriched with many of the person’s preferred items or in a naturalistic environment such as the person’s classroom or home. Data are recorded over multiple days, and the total time spent on each object or activity will reveal the presumed strongest preferences. Direct observation usually results in more accurate information than interviews but also requires more time and effort.

Systematic assessment involves presenting objects and activities to the individual in a preplanned order to reveal a hierarchy or ranking of preferences. This method requires the most effort, but it is the most accurate. There are many different preference assessments methods, all of which fall into one of the following formats: single item, paired items, and multiple items (Cooper, Heron, & Heward, 2006).

Single item preference assessment (also known as “successive choice”) is the quickest, easiest method. Objects and activities are presented one at a time and each item is presented several times in a random order. After each presentation, data are recorded on duration of engagement with each object or activity.

Paired method or “forced-choice” (Fisher et al., 1992) involves the simultaneous presentation of two items or activities at the same time. All items are paired systematically with every other item in a random order. For each pair of items, the individual is asked to choose one. Since all objects and activities have to be paired together, this method takes significantly longer than the single-item method but will rank in order the strongest to weakest preferences. Researchers found that the paired method was more accurate than the single item method (Pace, Ivancic, Edwards, Iwata & Page, 1985; Paclawskyj & Vollmer, 1995).

The multiple-choice method is an extension of the paired method (DeLeon & Iwata, 1996). Instead of having two items to choose from, there are three or more choices presented at the same time. There are two variations to this method: with and without replacement. In the multiple choice with replacement method, when an object is selected, all other objects are replaced in the next trial. For example, if the individual is given a choice of cookies, crackers, and chips, and he chooses cookies, the cookies will be available for the next trial, but the crackers and chips are replaced with new items. In the without replacement method, the cookies would not be replaced and the choice would only be between the crackers and chips. No new items would be available.

A few final recommendations

When conducting preference assessments, consider testing leisure items/activities and food assessments separately because food tends to motivate individuals more than toys and other leisure items (Bojak & Carr, 1999; DeLeon, Iwata, & Roscoe, 1997). Also, be sure to assess preferences early and often. Preference assessments should be conducted prior to starting any new intervention or behavior change program. And remember that preferences change over time and require continuous exploration. Therefore, assessments should be updated monthly or whenever an individual appears tired of or bored with the preferred items. Keep in mind too, that the identification of one type of preference may provide ideas for other potential reinforcers. For example, if an individual loves a certain type of crunchy cereal, he/she may like other cereals or crunchy snacks. Or if an individual enjoys coloring with crayons, consider exploring whether he/she may enjoy coloring with markers or using finger paints.

Finally, when selecting a preference assessment method, a practitioner or parent should consider the individual’s communication level, the amount of time available for the assessment, and the types of preferred items that will be available. Taken together, these preference assessment methods can provide the valuable information necessary to help motivate and promote behavior change in individuals with autism.

References

Bojak, S. L., & Carr, J. E. (1999). On the displacement of leisure items by food during multiple stimulus preference assessments. Journal of Applied Behavior Analysis, 32, 515-518.

Cooper, J. O., Heron, T. E., & Heward W. L. (2006). Applied Behavior Analysis (2nd ed.). Upper Saddle River, New Jersey: Prentice Hall.

DeLeon, I. G., & Iwata, B. A. (1996). Evaluation of multiple-stimulus presentation format for assessing reinforcer preferences.Journal of Applied Behavior Analysis, 29, 519-533.

DeLeon, I. G., Iwata, B. A., & Roscoe, E. M. (1997). Displacement of leisure reinforcers by food during preference assessments. Journal of Applied Behavior Analysis, 30, 475-484.

Fisher, W. W., Piazza, C. C., Bowman, L. G., & Amari, A. (1996). Integrating caregiver report with a systematic choice assessment. American Journal on Mental Retardation, 101, 15-25.

Fisher, W. W., Piazza, C. C., Bowman, L. G., Hagopian, L. P., Owens, J. C., & Slevin, I. (1992). A comparison of two approaches for identifying reinforcers for persons with severe to profound disabilities. Journal of Applied Behavior Analysis, 25, 491-498.

Pace, G. M., Ivancic, M. T., Edwards, G. L., Iwata, B. A., & Page, T. J. (1985). Assessment of stimulus preference and reinforcer value with profoundly retarded individuals. Journal of Applied Behavior Analysis, 18, 249-255.

Paclawskyj, T. R., & Vollmer, T. R. (1995). Reinforcer assessment for children with developmental disabilities and visual impairments. Journal of Applied Behavior Analysis, 28, 219-224.

Parsons, M. B., & Reid, D. H. (1990). Assessing food preferences among persons with profound mental retardation: Providing opportunities to make choices. Journal of Applied Behavior Analysis, 23, 183-195.

Windsor, J., Piche, L. M., & Locke, P. A. (1994). Preference testing: A comparison of two presentation methods. Research in Developmental Disabilities, 15, 439-455.


About The Author

Niall Toner MA, BCBA, LBA is a licensed behavior analyst and board certified behavior analyst with over 10 years experience working in the fields of applied behavior analysis and developmental disabilities. Niall is currently the Clinical Director for Lifestyles for the Disabled. Prior to the position he served as a consultant to various organizations including the New York City Department of Education. He also held the position of Assistant Director at the Eden II Programs. Niall has presented locally, nationally and internationally. His interests are Preference Assessments and Functional Analysis, which he presents and publishes.

 

Discussing Concerns With Family Members

This month’s ASAT feature comes to us from Peggy Halliday, MEd, BCBA and David Celiberti, PhD, BCBA-D. 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!


I am concerned that my two year old grandson may have signs of autism, but I am uncomfortable bringing this up with my son and daughter-in-law. Do you have any suggestions about how best to approach them?

 

It is natural to be unsure of how to share your concerns with your grandson’s parents. As is the case with many concerned family members, you may worry that such a discussion will not be well received or may cause some discomfort or tension in your relationship. If autism is a possibility, you would not want to delay screening and referral for possible evaluation and services because this may waste valuable time during which intervention can be most beneficial for your grandson. Even knowing that the best outcomes are associated with early diagnosis and intensive intervention, it still may be difficult to talk to your son and daughter-in-law if they have not expressed their concerns to you.

As a grandparent, you have already raised at least one child, so you probably have a good sense of what is typical in child development, and what is not. You may feel that your grandson is not making expected gains or may appear delayed in some areas such as communication or play relative to other children his age. Also, you may not have day to day contact so slower development of skills may be more apparent to you. This may create a sense of urgency in you that should be balanced with the need to support your son and daughter-in-law.

There are several important considerations. The way in which you approach your son and daughter-in-law will depend in large part on the quality of your pre-existing relationship and on the nature of how you communicate with one another. You may possess a relationship where difficult issues are frequently and easily discussed. On the other hand, this may not typify the type of relationship that you have. Regardless of your relationship, it is important that you bring this up from a place of love and concern, rather than judgment and blame. Many parents who have been carefully and respectfully approached by a relative later admit that they already had concerns of their own, and it was a relief to discuss them with someone else close to the child.

We would like to offer some concrete suggestions that may increase the likelihood that your discussion will be positive and constructive.

Planning Ahead:

  1. Take some time to think about what you want to share and how you want to frame your concerns. You might begin by commenting on the child’s strengths and praising the parents’ love and dedication to their child. It is important not to appear judgmental or focused only on the concerns.
  2. Plan your discussion ahead of time. Find a time and place when you will not be interrupted. It may be best when the child is with another caregiver.
  3. The role you take in the child’s life depends, of course, on geographic proximity, but be poised to offer concrete, practical help whenever possible. For example, you might offer to babysit siblings while parents pursue evaluation of the child, or offer a respite weekend of childcare so that your son and daughter-in-law might have time to discuss the situation without interruption. Whatever assistance you offer, the important thing is that your grandson’s parents perceive it to be helpful, so try and gauge their reactions carefully.

Having the Conversation:

  1. Try to keep the conversation free flowing. You may want to ask a few questions that will allow the parents to express their own concerns, if they have them (e.g., “I noticed that Billy became very upset when the phone rang. Has that happened before?” or “Does he seek you out when he is upset?”).
  2. Avoid labels and technical terms, which may trigger fear or upset from the parents. Focus instead on discussing milestones, which are observable indicators of a child’s development and accomplishments.
  3. In some cases, it may be beneficial to think about the discussion as a series of tiny conversations. This would be more appropriate if you have frequent contact with your son or daughter-in-law. It may then be helpful to share some observations that may provide a backdrop for later discussion (e.g., “Little Peter seems overwhelmed by noise levels.” or “I have noticed that he does not seem to know how to use words to get his needs met.). It may also be helpful to discuss observations surrounding worrisome or absent peer or sibling interaction.
  4. Emphasize the need to simply get any concerns checked out in order to “rule out” anything serious or to get some guidance and support in how to promote skill development. You might follow this up by mentioning that the earlier a potential problem is recognized and addressed, the easier it is to help the child.

Other Considerations:

  1. Most parents begin to become concerned that something may be wrong when their child is between the ages of 12 and 18 months. If the parents are beginning to realize a potential problem exists, you want to gently urge them not to delay a preliminary assessment and evaluation.
  2. You should never take for granted that developmental concerns will automatically be addressed during routine visits to the pediatrician. Refer parents to resources such as good websites and resources they can explore on their own (we emphasize the word “good” as there is a tremendous amount of misinformation about autism both in the media and on the Internet, particularly many false promises about autism treatment). The most helpful websites at this stage are typically the ones that discuss developmental milestones. Parents often know when to expect their infant and toddler to sit up or take their first steps, but they do not know when they should begin to babble with inflection, point to things they notice or want, imitate gestures, or show interest in another child.
  3. If the child is in a daycare, speak to his or her teachers and directors about the child’s progress. They should be keeping records on how the child is developing in different areas such as social interaction, verbalization, etc. They are also a good resource to use to help evaluate your child in a school setting.

The following websites include milestones checklists, booklets, and charts, and a wealth of other helpful information.

  • Association for Science in Autism Treatment (ASAT): On the ASAT website, you will find extensive information about the scientific support (or lack thereof) behind the full array of treatments proposed for autism, research reviews, articles and guidelines on how to make informed choices, and weigh evidence in selecting treatment options, a section of frequently asked questions such as the one you asked, information about upcoming conferences of interest, and links to helpful sites and other science-based organizations.
  • Centers for Disease Control and Prevention: The Act Early website contains an interactive and easy- to-use milestones checklist you can create and periodically update for children ages three months through five years, tips on sharing concerns with the child’s doctor, and free materials you can order, including fact sheets, resource kits, and growth charts.
  • First Signs: The First Signs website contains a variety of helpful resources related to recognizing the first signs of autism spectrum disorder, and the screening and referral process. There is a directory of local resources for at least eight states and that number is likely to increase over time.
  • American Academy of Pediatrics (AAP): The AAP website contains information for families, links to many other web sites, information about pediatrician surveillance and screening, and early intervention. This site contains great tools for pediatricians, as well as parents.
  • Autism Speaks: The Autism Speaks website includes an Autism Spectrum Disorder Video Glossary of clips designed to help parents and professionals learn more about the early ‘red flags’ of autism, information about how autism is diagnosed, and a resource library. They also offer a free 100 Day Kit designed to help families of newly diagnosed children make the most of the first 100 days following a diagnosis of autism.

About The Authors

Peggy Halliday, MEd, BCBA, is a Board Member of ASAT, and serves as the JCH Director of School Consultation at the Virginia Institute of Autism (VIA) in Charlottesville, Virginia, where she has been a practitioner since 1998. Peggy oversees trainings for parents and professionals and provides consultation to public school divisions throughout Virginia. She also oversees BCBA and BCaBA training experiences. In addition to serving as a presenter at state and national conferences, including the Organization for Autism Research (OAR), Commonwealth Autism Service (CAS), and Association for Behavior Analysis International (ABAI) Peggy was selected as an autism expert for the “how-to” website monkeysee.com. Peggy has been on the board of ASAT since 2010 and serves on the Public Relations Committee.

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.

 

Teaching Adaptive Skills

In this months’s ASAT feature, Diane Adreon, EdD answers a question about what to consider when helping a child gain independence. 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 article was originally published in ASAT’s free quarterly newsletter.


We are older parents and often lay awake at night worrying about our daughter’s ability to function independently when we are no longer able to care for her ourselves. She is 17 years old and is becoming more and more independent. We have read the “Hidden Curriculum” and that resource has opened our eyes to subtle social skills that may be missing in her repertoire. Are there adaptive skills that my wife and I should be considering that are often overlooked?

Individuals with autism spectrum disorders (ASD) typically have an uneven profile of skills (Ehlers et al., 2007). Regardless of cognitive ability, individuals with ASD often have difficulty with independent living skills. In fact, in many cases, areas of strength can mask significant deficits in adaptive skills. Adaptive behaviors are a reflection of the way an individual applies his or her cognitive skills in actual life situations. Research has shown that individuals with ASD have significantly lower adaptive behavior functioning than their measured cognitive abilities (Klin et al., 2007; Lee & Park, 2007; Mazefsky, Williams, & Minshew, 2007; Myles et al., 2007). This suggests that, no matter the individual’s level of functioning, we need to focus on teaching adaptive skills.

When identifying what skills to teach, it is important to remember that goals should be individualized. Some questions to ask in identifying goals for your daughter include:

  • Is the skill a reasonable one to teach given her age and her opportunities to perform the skill?
  • Will she be transitioning to a new environment in the next few years? If so, what skills will she need to be successful in that environment?
  • If your daughter is currently in a program that can address daily living skills, can the goals be formalized making them a part of her IEP or IHP?

The Adaptive Behavior Assessment System- Second Edition (ABAS-II; Harrison & Oakland, 2003), Scales of Independent Behavior-Revised (SIB-R; Bruininks, Woodcock, Weatherman, & Hill, 1997), or the Vineland Adaptive Behavior Scales- Second Edition (VABS-II; Sparrow, Cicchetti, & Balla, 2005) are all adaptive behavior assessment instruments that can yield information helpful in identifying goals. Although the overall scores will provide a global picture of your daughter’s adaptive skills, going over the specific items on the protocol will provide substantially more useful input in the identification of goals.

The science of applied behavior analysis (ABA) provides numerous strategies to assist in teaching skills. Baseline data supply information on current skill levels and can help identify target behaviors. A task analysis assists in breaking down complex tasks into smaller components and behavior chaining procedures can help determine which steps to teach first. In addition, behavioral shaping procedures and carefully constructed prompting hierarchies can help ensure that we are teaching skills in the most efficient and effective manner. Moreover, identifying reinforcers and using data to determine schedules of reinforcement can address motivational issues. Finally, teaching strategies to address generalization challenges can increase the likelihood of the individual learning to perform the skills in a variety of situations.

Since the scope of skills associated with independence is quite broad, the remainder of this response will focus on some adaptive skills that are often overlooked. When such skills are taught to individuals with ASD, they can become more independent.

Teach safe and practical money skills. When making purchases out in the community, it is a good idea to not “show” others how much money you have. Therefore, consider teaching your daughter practical strategies such as getting her money out of her wallet ahead of time, counting her money in her wallet and taking out just the amount of money she needs for a purchase. You may also want to teach her to make purchases using a debit card and the protocol for withdrawing money at an ATM. This includes teaching her to maintain an appropriate amount of space between her and others in the ATM line, putting the money into her wallet before walking away from the ATM, and so forth. It cannot be overstated that practice is essential for learning any of these skills. Some ways you can create more opportunities for your daughter to practice these skills include establishing a bank account and giving her a check for her allowance; thereby creating a reason for her to learn how to make deposits and withdrawals from an ATM. You can also have her practice making deposits and withdrawals inside the bank with a teller.

Teach your daughter to use a calendar to track upcoming events. For most of us, the number of things we need to remember increases significantly when entering adulthood. In addition, some of what we may need to remember occurs only periodically, and outside of our daily routines, thus it can be much harder to rely on one’s memory in those instances. Depending on your daughter’s level of functioning, your primary goal might be having her check her schedule to see what is happening that day or to prepare her for upcoming events and activities. In other instances, you can work with her on marking a calendar with upcoming events or reminders (e.g., return library book at school, swimming at Jake’s – bring swimming suit) and reviewing them daily. Teach her to get in the habit of referring to the calendar for information. Individuals with ASD need practice to use visual resources.

Teach your daughter to create and use her own to do list. Remember, a to-do list can use any kind of visual or cue so that your daughter understands what to do. Individuals of all functioning levels can learn to follow a to-do list if it is written at the appropriate level (may use pictures instead of words) and they have been taught to refer to it and do each task independently. For some, you may want to start early in having them write or type their to do list and learn to refer to it and check things off when done. It is also a good idea to help them identify and build in preferred activities to reinforce “work before play.”

Teach your daughter to take medication independently. Most of us use visual cues or create a routine to remind us to take our medication, so work to establish similar ones for your daughter. If the medication regime is complicated, consider using a weekly pill box and organizing the medication on Sundays. Or perhaps you have a visual reminder present at the breakfast table that says, “Take medication.” In some instances, this might mean having the medication bottle or pill box on the breakfast table. Establish the routine of having your daughter take the medication right before breakfast (if the prescription allows) as this will decrease the likelihood that she will forget it. Once you have introduced this routine, decrease your verbal reminders to take the medication and direct her attention to the visual reminder. If she has a smart phone, you can also teach her how to set up a daily reminder to take the medication at specific times.

Hopefully these suggestions and examples of possible targets have provided you with a few additional ideas on ways to ensure your daughter continues to make progress towards greater independence. Assessment of her skills across a number of domains (home, community, health, safety, and work) as well as reviewing her individual goals and progress on a regular basis can ensure an ongoing conversation about priority adaptive skills to help her continue moving\ forward. It does take time and practice, but the pay-off is worth it in the long run.

References

Bruininks, R. Woodcock, R., Weatherman, R., & Hill, B. (1997). Scales of Independent behavior-Revised. Rolling Meadows, IL: Riverside Publishing.

Ehlers, S., Nyden, A., Gilllberg,C., Sandberg, A. D., Dahlgren, S., Hjelmquist, E., & Odén, A., Jr. (1997). Asperger Syndrome, autism, and attention disorders: A comparative study of the cognitive profiles of 120 children. Journal of Child Psychology and Psychiatry and Allied Disciplines, 38, 207-217.

Harrison, P. L., & Oakland, T. (2003). Adaptive Behavior Assessment Systems (2nd ed.). Minneapolis, MN: Pearson Assessment.

Klin, A., Saulnier, C. A., Sparrow, S. S., Cicchetti, D. V., Volkmar, F. R., & Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. Journal of Autism and Developmental Disorders, 37, 748-759.

Lee, H. J., & Park, H. R. (2007). An integrated literature review on the adaptive behavior of individuals with Asperger syndrome. Remedial and Special Education, 28, 132-139.

Mazefsky, C. A., Williams, D. L., & Minshew, N. J. (2008). Variability in adaptive behavior in autism: Evidence for the importance of family history. Journal of Abnormal Child Psychology, 36, 591-599.

Myles, B. S., Lee, H. J., Smith, S. M., Tien, K., Chou, Y., Swanson, T. C., & Hudson, J. (2007). A large scale study of the characteristics of Asperger syndrome. Education and Training in Developmental Disabilities, 42, 448-459.

Sparrow, S., Cicchetti, D. & Balla, D. (2005). Vineland Adaptive Behavior Scales (2nd ed.). Minneapolis, MN: Pearson Assessment.


About The Author

Dr. Adreon is the associate director of the University of Miami-Nova Southeastern University for Autism & Related Disabilities (UM-NSU CARD). She also has a private consulting practice specializing in high-functioning autism spectrum disorder (www.spectrumlifestrategies.com, Info@spectrumlifestrategies.com)