Your Child’s Autism Diagnosis Long Term

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In the years immediately after a parent learns of a diagnosis of autism, it can be especially challenging to think of your child’s autism diagnosis long term. But as parents advocate for their child, and as practitioners work with the family to create goals for that child, the long term must be considered. Here are a few suggestions to help with considering the long term, while focusing on short-term goals:

  • Create a vision statement. One of my favorite books is From Emotions to Advocacy: The Special Education Survival Guide by Pam Wright and Pete Wright. This book covers everything parents need to know about advocating for a child with special needs. One of the first things they suggest is creating a vision statement. They describe this as “a visual picture that describes your child in the future.” While this exercise may be challenging, it can help hone in on what is important to you, your family, and your child with special needs in the long term.
  • Look at your child’s behaviors, then try to imagine what it might look like if your child is still engaging in that behavior in five or ten years. Often, behaviors that are not problematic at three are highly problematic at 8 or 13 years old. Such behaviors might include hugging people unexpectedly or (for boys) dropping their pants all the way to the ground when urinating (which could result in bullying at older ages). While it is easy to prioritize other behaviors ahead of these, it’s important to remember that the longer a child has engaged in a behavior, the more difficult it may be to change.
  • Talk to practitioners who work with older students. Many practitioners only work with a certain age group of children. While they may be an expert for the age group they work with, it may be helpful to speak with a practitioner who works with older kids and ask what skill deficits they often see, what recommendations they may make, and what skills are essential for independence at older ages.
  • Talk with other parents. Speaking with other parents of children with special needs can be hugely beneficial. Over the years, I’ve worked with hundreds of parents who are spending countless hours focusing on providing the best possible outcomes for their children. And while it’s impossible to prepare for everything that will come in your child’s life, it may be helpful to find out what has blindsided other parents as their children with special needs have grown up.

WRITTEN BY SAM BLANCO, PhD, LBA, BCBA

Sam is an ABA provider for students ages 3-15 in NYC. Working in education for twelve years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges

ABA Journal Club: Interventions and RBTs (response)

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One of the tenets of ABA is to provide evidence-based practice. The best way to help us do this is to keep up with the literature! Each month, Sam Blanco, PhD, LBA, BCBA will select one journal article and provide discussion questions for professionals working within the ABA community. The following week another ABA professional will respond to Sam’s questions and provide further insight and a different perspective on the piece.

This week, Solandy Forte, PhD, LCSW, LBA, BCBA-D provided a response to some of Sam’s questions about the article below:

I am thrilled to contribute to the conversation about RBT as it deserves the attention particularly as we continue to grow as a field.  We are a young field that is experiencing growing pains but they are good ones.  I appreciate the contributions that many practitioners in our field have shared relating to credentialing of RBTs.  At the end of all this, I am confident we will have established training and experience standards to will lead to positive outcomes for our consumers.  We have a long road ahead. 

Leaf, J. B., Leaf, R., McEachin, J., Taubman, M., Smith, T., Harris, S. L., … & Volkmar, F. R. (2017). Concerns about the Registered Behavior Technician™ in relation to effective autism intervention. Behavior Analysis in Practice, 10(2), 154-163.

  • The authors discuss the evolution of the BACB and concerns with certifying behavior analysts prior to the advent of RBTs. What did you think of the concerns identified here? Are these still concerns we have about BCBAs? How are they similar or different than concerns about RBTs?

The field of behavior analysis is practically in its adolescence.  There are many other helping professions such as psychology, psychiatry, and social work that have experienced growth for over a century and have had to navigate through barriers impacting the practitioner’s ability to provide quality behavioral healthcare with the increasing demand of service.  It is not unusual for a growing field to consider identifying ways to meet the healthcare needs of the population particularly when the number of qualified practitioners is not sufficient to meet the demands.  For instance, in the nursing field, registered nurses are often supported by nursing assistants and nurse aides.  The nursing field developed training and experience standards for each of these credentials and these standards have likely been modified as the profession has studied the impact on the overall delivery of services and its impact on the patient. 

Sure, the concerns raised are valid and should be evaluated carefully by researchers so that they can inform special matter expert groups established by the BACB®.  However, the field of behavior analysis cannot ignore the obvious increase in demand for applied behavioral analysis services.  It will take decades for the field to assess what are the most appropriate training and experience requirements to promote optimal consumer outcomes.  This is not only the case for RBTs® but also for BCBAs®.  Again, this is a growing field and we should expect to see modifications in the credentialing requirements. 

  • How does the current training of RBTs compare to the training of behavior technicians in early behavior analytic studies?

Any training of behavior technicians in early studies were developed by science practitioners who based their training procedures (e.g., topics, hours, teaching methodology, etc.) on either previous studies that evaluated training methods or training procedures that best fit their setting, staff, and client needs.  These research studies were not evaluating the training requirement of the RBT®.  Regardless, these studies contributed to the field of behavior analysis particularly when practitioners were developing in-house training requirements and adjusting along the way as they observed the behavior technician’s ability to implement behavioral technology with fidelity and retain what they had learned in the initial training overtime.  Currently, research studies are evaluating training packages that are aligned with the RBT® requirements and these will contribute to any revisions to credential requirements. 

  • Look at the RBT task list. The authors argue that the current amount of training does not meet standards set forth by research on staff training. How can BCBAs and organizations hiring RBTs support their mastery of the skills on this list?

Every organization is responsible for setting their own standards with regard to training of staff.  Training requirements will vary depending on the setting and in some cases requirements will expand beyond RBT® training.   For instance, there are organizations that require staff to receive physical management training, CPR, and first aid, to name a few.  It is common for training to occur on a regular or annual basis for an organization to remain in compliance with state regulations or enhance the delivery of services.  With regard to the RBT® credential, organizations are responsible and should carefully evaluate mastery of skills.  Further, organizations should include in their training protocols procedures for evaluating generalization and maintenance of acquired skills.  It is not only to important to meet mastery for each item on the RBT® task list but it is critical for staff to implement the skills they have acquired in a variety of setting over time.  RBTs work a variety of settings including home, school, and community; therefore, mastery of skills cannot just be mastered in the classroom setting but also must be generalized to the settings in which will be applied. 

  • Many of the recommendations by the authors include changes the BACB should enact as well as research that should be conducted. How are you able to take a role in these types of recommendations?

There is no doubt that research should be conducted to further evaluate the training and experience requirements for RBTs® but again this is going to take time.  Research studies take years to plan, execute, and disseminate.   This is not an easy feat but one that should be charged by the practitioners in the field and the demand for the delivery of high-quality behavioral services.  Our goal is to contribute to the solution by collecting and sharing data that experts can use to revise RBT® requirements.  We cannot ignore the obvious need for research in this area that will ultimately contribute to the positive growth of our field. 

Solandy Forte, PhD, LCSW, LBA, BCBA-D, is the Director of Consultation Services and Community Outreach at Milestones Behavioral Services.  She is a doctoral level Board Certified Behavior Analyst licensed in Connecticut and Massachusetts and a Licensed Clinical Social Worker.  Dr. Forte provides consultation services to the school programs at Milestones serving individuals with a diverse set of complex learning needs.  In addition to providing direct consultation to children within the private school setting, she also has provided consultation to multi-disciplinary teams within the public school setting where she assisted with program development initiatives to promote building capacity for educating children with autism and related neurodevelopmental disorders within the least restrictive educational setting.  Dr. Forte has experience working with children and young adults with special needs in their homes, schools, and community settings. She is an adjunct professor for the Institute of Autism and Behavioral Studies at the University of Saint Joseph in West Hartford, Connecticut and the Institute of Behavioral Studies at Endicott College in Beverly, Massachusetts. 

Journal Club #4: RBTs and Interventions

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One of the tenets of ABA is to provide evidence-based practice. The best way to help us do this is to keep up with the literature! Each month, Sam Blanco, Ph.D., LBA, BCBA will select one journal article and provide discussion questions for professionals working within the ABA community. The following week another ABA professional will respond to Sam’s questions and provide further insight and a different perspective on the piece.

In my daily work, I supervise Registered Behavior Technicians (RBTs) who are providing the direct care to my clients with autism. The RBT designation is only a few years old, and there are concerns about the training and maintenance of skills for these employees. However, another concern is the low number of people available to provide frontline services for high number of individuals who require it.

The work that RBTs do is important and necessary. It’s important for our field, as well as individual organizations and BCBAs to identify potential problems with the current model of providing treatment, and work to continuously improve upon the model. One way to start the conversation within your own organization is to read the following article and identify ways in which you can address the concerns it brings to light.

Leaf, J. B., Leaf, R., McEachin, J., Taubman, M., Smith, T., Harris, S. L., … & Volkmar, F. R. (2017). Concerns about the Registered Behavior Technician™ in relation to effective autism intervention. Behavior Analysis in Practice, 10(2), 154-163.

  • The authors discuss the evolution of the BACB and concerns with certifying behavior analysts prior to the advent of RBTs. What did you think of the concerns identified here? Are these still concerns we have about BCBAs? How are they similar or different than concerns about RBTs?
  • How does the current training of RBTs compare to the training of behavior technicians in early behavior analytic studies?
  • Look at the RBT task list. The authors argue that the current amount of training does not meet standards set forth by research on staff training. How can BCBAs and organizations hiring RBTs support their mastery of the skills on this list?
  • Have you identified concerns with the current model (BCBAs supervising RBTs who provide direct care) that were not mentioned in the article? If so, how have you worked to address those concerns?
  • Discuss the unintended consequences described in the article. Have you seen these consequences in your current setting?
  • Many of the recommendations by the authors include changes the BACB should enact as well as research that should be conducted. How are you able to take a role in these types of recommendations?

WRITTEN BY SAM BLANCO, PhD, LBA, BCBA

The founder of ABA Journal Club, Sam is an ABA provider for students ages 3-15 in NYC. Working in education for twelve years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges.

Ask A BCBA: I’m a Brand-New BCBA! What Should I Expect??

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Ask A BCBA is a new series where we take your questions to our favorite ABA professionals. Do you have a question for a BCBA? Email us at info@difflearn.com and you could be featured in a future post!

Congratulations on passing your BACB exam!  Not only did you pass this notoriously difficult test, but you completed hundreds of hours of graduate coursework and supervised experience to get to this point.  You had to have been dedicated and hard-working.  You have demonstrated your knowledge to your supervisor(s) and on a written exam.  You should feel proud!

You are now entrusted with the tools to change behavior, shape new skills, and make lives better.  Make no mistake, this is a big responsibility.  As a BCBA, you are expected to be proficient in all of the skills of a behavior analyst (as per the BACB task list) and to abide by the BACB Code of Ethics.  Part of the ethical code is that there is no excuse for not knowing the ethical code.

Some new BCBAs feel overwhelmed by their new responsibilities.  This is completely normal, and not a bad thing if it leads you to approach your new position with respect and caution.  Here are some suggestions for easing this transition and building your confidence.

  • Maintain contact with your supervisor or another mentor.  Most supervisors are happy to continue to have some continued less-structured contact to provide guidance.  Other seasoned BCBAs in your community might also be open to providing some informal mentoring.
  • Join a community of other BCBAs.  There are so many options for how to do this.  Joining your state ABA association is an excellent idea if you haven’t done so already.  If you are a social media person, there are many Facebook groups for BCBAs.  Other BCBAs at your job may want to connect, too.
  • Keep your resources handy.  Yes, I realize that you probably never want to see “The White Book” again – at least for a while – but don’t be afraid to look something up if you’re not sure.  Although you passed the exam, you may still need a refresher on less-familiar concepts when they come up in your work.
  • Start collecting CEUs!  Yes, now!  You need to document at least 32 CEUs every 2 years, so don’t fall behind.
  • Subscribe to journals.  JABA is not expensive, even when you are no longer a student, and you may not have access to your university library anymore.

Some new BCBAs feel overwhelmed by their new responsibilities.  This is completely normal, and not a bad thing if it leads you to approach your new position with respect and caution.  Here are some suggestions for easing this transition and building your confidence.

Remember that learning is a lifelong journey.  Even though you have made an amazing accomplishment, you aren’t expected to know everything.  Take the energy and enthusiasm that got you to this point, and use them to continue to develop your skills and your network.  As B.F. Skinner wrote in Walden Two, “It is not a question of starting.  The start has been made.  It’s a question of what’s to be done from now on.”  The hard part is over, so go ahead and make the most of your accomplishment!

About The Author

Dana Reinecke, Ph.D., BCBA-D is a doctoral level Board-Certified Behavior Analyst (BCBA-D) and a New York State Licensed Behavior Analyst (LBA).   Dana is a Core Faculty member in the Applied Behavior Analysis department at Capella University.  She is also co-owner of SupervisorABA, an online platform for BACB supervision curriculum, forms, and hours tracking.  Dana provides training and consultation to school districts, private schools, agencies, and families for individuals with disabilities.  She has presented original research and workshops on the treatment of autism and applications of ABA at regional, national, and international conferences.  She has published her research in peer-reviewed journals, written chapters in published books, and co-edited books on ABA and autism.  Current areas of research include use of technology to support students with and without disabilities, self-management training of college students with disabilities, and online teaching strategies for effective college and graduate education.  Dana is actively involved in the New York State Association for Behavior Analysis (NYSABA).

What Autism Awareness Should Be About

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This month’s ASAT feature comes to us from 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!

April is Autism Awareness Month. Blue puzzle pieces will appear on thousands of Facebook pages and billboards, and the media will give greater attention to autism. Further awareness is wonderful, as detection and diagnosis are necessary first steps to accessing help in the forms of treatment, information, and support. With well over 500 treatments from which to choose, parents of children with autism need guidance, tools, and accurate information to empower them to make the best possible choices for their children: these choices will undoubtedly have a profound impact on both their current quality of life and their children’s future and potential.

When I first entered the field over 30 years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with “artistic” children. I got that a lot.  With the incidence of one in 59 children today, our own families, neighbors, and co-workers are all touched by autism. In fact, the sheer numbers have heightened awareness of autism in and of themselves. This awareness is essential: it promotes early detection, and with early detection, we hope for a relatively clearer course toward effective treatment and better outcomes.

Sadly, however, the early detection of autism alone does not provide a seamless path to intervention. Furthermore, families whose children are diagnosed with autism are still not able to access the most effective science-based treatments available expeditiously. Instead, families often have to sort through hundreds of pseudoscientific treatments until they arrive at the most effective interventions supported by peer-reviewed research to address the complexities of autism.

“Autism Awareness” should be about more than just detection and diagnosis. At the Association for Science in Autism Treatment (ASAT), it has always been our hope that the conversation around autism awareness would be broadened to focus upon addressing the obstacles that separate individuals with autism from receiving effective, science-based intervention and combatting the misinformation that distracts families, caregivers, and teachers from accessing accurate information.  I offer 11 perspectives about what “Autism Awareness” should be about, along with several ways that ASAT can assist families and providers alike in navigating the complex maze of autism treatment options. 

#1  “Autism Awareness” must differentiate effective treatments that are scientifically validated from the plethora of “therapies” and “cures” lacking scientific support. Such a distinction is critical.   

Autism treatment is a billion-dollar industry. For the majority of the 500+ available interventions, science is overlooked in favor of pseudoscience, and they are marketed using heart-wrenching testimonials, anecdotes and video montages, and often bolstered with poorly crafted and misleading surveys. Many interventions boast inaccurate and even outrageous claims that are touted as evidence of effectiveness. Marketing of these so-called “therapies” and “cures” is unambiguously aggressive in nature, and so overwhelming that it can drown out accurate information for those parents desperate to help their children access the very best treatment. We are in a time when anything can be placed before the word therapy and pushed forth as a “bonafide treatment” (Legos, llamas, bleach, sand, magnets and even Shakespeare to name but a few examples).

We do no favors for children with autism, their families, and those responsible for providing needed services when we not only ignore junk science, but allow it to proliferate by failing to counter baseless claims. Visit our website to learn more about the scientific support behind various autism treatments, the relevance of peer-reviewed research, the pitfalls of testimonials, as well as many other articles related to becoming a savvy consumer. Please also see our review of the second edition of Dr. Sabrina Freeman’s book, The Complete Guide to Autism Treatment.

#2 “Autism Awareness” must recognize our collective responsibility to make sound choices.

As adults, voters, consumers, providers, and parents, choice underlies all of our decisions. We have a right to make these decisions, even poorly; however, when we hold the futures of individuals with autism in our hand, decision-making power comes with tremendous responsibility. Responsibility that should never be abdicated. There is a myriad of “decision-makers” whose choices have profound implications for children and adults with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, and taxpayers.

Please see our webpage for parents.  There you will find an article on questions to ask marketers/providers so you can make sure that the individual with autism in your life is receiving science-based treatment,  as well as questions that you can ask yourself. You can also read more about the three phases of inquiry about particular interventions and their associated questions and considerations in the Road Less Traveled: Charting a Clear Course for Autism Treatment.

#3 “Autism Awareness” must alert and remind the community that available information on the Internet (and actual information from providers) varies greatly in accuracy, and, in fact, can be completely wrong.

As we know, not all information on the Internet is reliable and accurate. You have probably heard the term, caveat emptor (“Let the buyer beware”). Consumers must also practice caveat lector (“Let the reader beware”). Often, Internet information is deemed equivalent in relevance, importance, and validity to research published in peer-reviewed scientific journals, but it is not.  Testimonials and uncontrolled studies from so-called researchers can lead parents astray and be a tremendous source of distraction.  Parents of newly-diagnosed children may be particularly vulnerable. Know the red flags to avoid and learn how to evaluate research by visiting our website. Our library of articles highlights scientific concepts and methods as they relate to potential autism interventions, with the goal of providing families, educators, and clinicians with the information they need in order to be savvy consumers of marketed treatment products and therapies.

#4 “Autism Awareness” must include responsible reporting by journalists who embrace their role as “public educators” and who are committed to spreading accurate information.

There are scores of “miracle cures” and “breakthroughs” for autism that receive widespread media attention (e.g., print and online news outlets, radio and television programs), even if these treatments have not been shown to be beneficial through peer-reviewed, published research.  The media has a responsibility to scrutinize sensational claims related to a proposed treatment, and to be knowledgeable enough to report on those treatments with healthy skepticism and objectivity. To support accuracy in the media, ASAT has developed a webpage for journalists. For examples of accurate and inaccurate reporting, please learn more about our Media Watch campaign, review resources about science journalism, and peruse our bank of archived letters. You will find that some of these showcase accurate media representations whereas others highlight concerns about inaccurate representations.

#5 “Autism Awareness” must recognize the critical need for newly-diagnosed children to access effective treatment ASAP. We know that early intervention makes a huge difference.

While individuals with autism learn and progress across their lifespan, it is widely understood that the earlier intervention begins, the greater the potential for an optimal outcome. Please learn more about the research basis for early intervention.  It is also important to remember the limited window of time there is to prepare children for the “least restrictive setting” once they enter the public school system.  

The fact that resources allocated early can save a tremendous amount of resources over an individual’s lifespan does not always enter the conversation when evaluating costs and benefits. This must change. These cost savings should become an integral part of the conversation about the appropriateness of intensive early intervention. Please see the following articles on the ASAT website:

#6 “Autism Awareness” should also instill hope for a better tomorrow for those individuals who are not part of the “best outcome” group.

With the right treatment and preparation for adolescence and adulthood, all individuals with autism demonstrate improvement, and many go on to lead happy, productive, and fulfilling lives.  Much of the conversation about treatment, however, focuses on “best outcome” and this is often defined as entering “mainstreamed” education settings or losing the diagnosis of autism altogether. This may delegitimize the significant progress made by most individuals with autism, whose outcome may be different, but no less important and meaningful. We know, for example, with intensive intervention based on applied behavior analysis (ABA), individuals with autism learn to live and work in the community, access faith communities, fully participate in routine healthcare, enjoy a range of recreational pursuits including a commitment to fitness, become independent in their self-care needs, have meaningful relationships and are active, contributing members of their communities. The importance of such gains must be recognized as a significant benefit of effective treatment and are relevant conversations to have, particularly at a time when some vocal bloggers are viciously maligning any and all treatment efforts as abusive, immoral, or otherwise unethical.  This includes the denigration of parents who only want to help their child realize his or her fullest potential.

Autism awareness should definitively include a celebration of a broad array of outcomes as was touched upon in our recent interview with Catherine Maurice, author of Let Me Hear Your Voice, as well as editor of a number of other titles. Please also visit our Perspectives page that highlights success stories of young people with autism, who are not necessarily in the best outcome group, carving out sustainable vocational experiences.

#7 “Autism Awareness” must mandate accountability from all treatment providers regardless of discipline.

Accountability involves a shared commitment to objectively defined targets, data collection, and respect for the scientific method. It is every provider’s responsibility to objectively measure outcomes. No one should get a pass on accountability. No one is immune from defining their target and objectively measuring progress. No one should get away with implementing their intervention carelessly and in non-transparent manner. No one should be permitted to boast claims that they cannot demonstrate through data. These unfortunate realities should not be tolerated.

Providers using interventions that lack scientific support have an ethical obligation to share this fact with consumers, and to exercise caution in making claims about outcomes. Far too often, applications of interventions that lack any scientific support are carried out in a manner devoid of transparency and objective measures to substantiate claims of the treatment’s success. This must not be tolerated. Providers must make sound, scientifically-validated decisions and recommendations. Please visit our website for more information about ethics and evidence-based practice.

#8 “Autism Awareness” must involve recognition that an abundance of clinical research already exists, and this body of research matters.

In the world of autism intervention, peer-reviewed research, which should guide and inform treatment efforts, is too often disregarded or ignored altogether. Imagine a world in which it was deemed acceptable for mainstream cancer providers to treat childhood leukemia with methods they preferred without consideration of existing research. Sadly, that is the reality of autism treatment, as many providers use their personally-preferred methods, often divorced from scientific support and then often carried out without any objective means to assess benefit. 

If treatment providers and consumers are interested in published research on diverse topics such as improving conversation skills, promoting academic skills, eliminating self-injurious behavior, or developing tolerance for health care procedures, they can find it. Sadly, these peer-reviewed studies are often not accessed by treatment providers and caregivers. Thousands of researchers and experts in their fields have published their findings in peer-reviewed journals that can guide autism treatment, yet their findings are often overshadowed by media representations which put sensationalism about the “next big thing” in autism treatment over objective scientific research. Please visit our website often to read our ever increasing number of research synopses  and vast library of treatment summaries.

#9 “Autism Awareness” should help us identify and overcome the barriers that families and individuals with autism face even within their own communities.

Like all families, those with children with autism want to be able to live comfortably and fully within their community. That may mean simply going to the park, enjoying play dates, attending religious services, accessing routine medical care, going to the movies with friends, or eating at a restaurant with their family. Unfortunately, many families are not able to access these activities because the community is not sufficiently informed or prepared to include individuals with autism within these settings. In some cases, the children are not taught how to manage these situations well due to ineffective treatments. As a result, families of children with autism are often isolated. With 1 in 59 children being diagnosed, every facet of society should become aware of the supports necessary for individuals with autism to succeed within their communities. This could involve accessing information about success stories, receiving education and training, and an open dialogue with families about what could be helpful. It would be prudent if every facet of society evaluated what they are doing to support individuals with autism, what they are not doing, and what they could be doing differently.

#10 “Autism Awareness” is needed worldwide.  In many countries, families of individuals with autism face incredible challenges and barriers.

As a US-based organization we recognize the many benefits that exist here in our country. These include, although are not limited to, well-established special education laws, the lion’s share of board-certified behavior analysts and providers from other disciplines who are committed to science-based practice, and a longer history of the conversation about best practices. This is in contrast to the experience of families of children with autism residing in many other countries who are offered outdated therapies such as psychoanalysis, have very limited resources, face stigma and rejection within their communities, may encounter a professional community that has low expectations about what may be possible, and lack the support of laws mandating even adequate treatment and education. Providers eager to learn and use best practices will face limited education and training opportunities, a dearth of accessible supervisors, and struggle to access supporting professional networks. In some countries, the social and economic conditions may be so poor that autism treatment is relegated to the back burner. 

We believe that knowledge is power and that a global community of savvy and informed consumers can help shape the landscape of effective intervention. Please note that we have flyers about our website and our monthly publication, Science in Autism Treatment, in several languages including Arabic, Brazilian Portuguese, French, Hebrew, Hindi, Italian, Russian, Serbian, and Spanish. If you are interested in distributing our translated materials, please write us at info@asatonline.org. At the bottom of every page we make it easy to disseminate knowledge through a variety of social media platforms. Please also note the Google language translation option in the upper right-hand corner of our webpage. 

#11 “Autism Awareness” should be about the reality that the hundreds of thousands of children with autism will soon become hundreds of thousands of young adults with autism; unfortunately, we are woefully ill-prepared to meet their needs.

When children with autism become adults (at the age of twenty-one in the U.S.), funding for services drastically changes. As a result, there are very few quality programs for adults with autism.We are facing a crisis in the field, with a scarcity of services for adults with autism and the absence of a clear strategy for closing the gap between the ever-increasing need, and an unprepared supply of resources. Quality evidence-based services for individuals with autism must continue into the adult years. Research indicates that interventions such as applied behavior analysis (ABA) can effectively help adolescents and adults with autism continue to work toward their fullest potential.

At ASAT, we have broadened our scope so that we can be a part of this important and essential dialogue and have written extensively about that commitment and are continuing to add to our webpage that addresses lifespan topics. Here one can learn about maximizing employment opportunities, strategies to support older learners, and transitioning to adulthood. We are expanding our collection of research synopses to include adolescent and adult participants with autism and we have written about this topic extensively within Media Watch with the letters showcased on our Lifespan page.

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We hope these 11 perspectives have furthered your appreciation of the complexities and nuances surrounding autism awareness. We all play a role in advancing science, bettering the lives of individuals with autism, and helping their families and supporters become skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important discussions and an even bigger part of the solution. For more information on how to join ASAT and be part of the solution, please subscribe to Science in Autism Treatment, visit our website, and follow us on Facebook. Learn more about how to become a sponsor, volunteer, or extern. Or you can support our work by making a donation. Join us in making a difference in the autism community!

David Celiberti, PhD, BCBA-D, is the Executive Director of ASAT and Past-President, a role he served from 2006 to 2012. He is the Co-Editor of ASAT’s monthly publication, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993 and his certification in behavior analysis in 2000. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis (ABA), and early childhood education. 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 ABA at both undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.

What Is Procedural Fidelity In ABA?

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It is not uncommon for parents or practitioners to implement a new intervention that appears to be working well, then after a few weeks or months report that the intervention has stopped working. Often, the change in behavior in feels like a mystery and leaves people scrambling for a new intervention. But before searching for a new intervention, you should consider the possibility of problems with procedural fidelity, which “refers to the accuracy with which the intervention or treatment is implemented” (Mayer, Sulzer-Azaroff, & Wallace, 2014).

Problems with procedural fidelity in ABA are common, and you will experience more success with your interventions if you take steps to address fidelity at the outset. Here are a few suggestions:

  • Post the steps in a visible spot. Clearly list the steps of the procedure and put them in a spot where you will see them often. This might be on the actual data collection sheet or on the wall. One parent I worked with had a Post-it® note with the steps for our intervention attached to her computer screen. Another parent kept the steps inside the ID part of his wallet, where they were protected and visible each time he opened his wallet.
  • Plan meetings to go over the steps. As part of your intervention, set brief monthly or quarterly meetings to go over the steps of the intervention and be sure everyone is maintaining procedural fidelity.
  • Assess for procedural fidelity. Schedule observations to ensure that each step of the intervention is implemented as described. If you do not have someone who can supervise you, take video of yourself implementing the intervention, watch it and compare your actions to the steps outlined in the intervention plan.
  • Outline steps for systematic fading of the intervention. When implementing an intervention, the goal is to have the learner eventually exhibiting the desirable behavior without prompts or planned reinforcement. Sometimes when a parent or practitioner sees the learner’s behavior improving, they begin to remove the prompts or planned reinforcement before the learner is quite ready for it. By writing a plan for fading the intervention into the plan, you make it clear to everyone involved what the requirements are for each step towards mastery.

REFERENCES

Mayer, G.R., Sulzer-Azaroff, B., & Wallace, M. (2014). Behavior analysis for lasting change (3rd ed.). Cornwall-on-Hudson, NY: Sloan Publishing.

About The Author

Sam is an ABA provider for school-aged students in Brooklyn, New York. Working in education for over 15 years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges and the Senior Clinical Strategist at Encore Support Services.

ABA Journal Club #3: Functional Analysis

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One of the tenets of ABA is to provide evidence-based practice. The best way to help us do this is to keep up with the literature! Each month, Sam Blanco, PhD, LBA, BCBA will select one journal article and provide discussion questions for professionals working within the ABA community. The following week another ABA professional will respond to Sam’s questions and provide further insight and a different perspective on the piece.

Head to our Facebook page to join the discussion and let us know your thoughts!

When I was first starting out in behavior analysis, I was amazed at the simplicity and accuracy of functional analysis. Behaviors that had seemed complex and impossible to change suddenly made sense. I felt ready to create interventions to address those behaviors, and started to see more success in my behavior change procedures. Functional analysis remains one of my favorite topics to teach, and one of the questions I get most often from my graduate students is about ethical concerns in relation to completing a functional analysis for potentially dangerous behaviors. 

This has been a concern in the field, and there is a strong evidence base that identifying, assessing, and treating precursor behaviors is effective in reducing the target problem behavior. For this month, I have selected a paper on this topic.

Herscovitch, B., Roscoe, E. M., Libby, M. E., Bourret, J. C., & Ahearn, W. H. (2009). A procedure for identifying precursors to problem behavior. Journal of Applied Behavior Analysis, 42(3), 697-702.

What is the purpose of the current study? How is it relevant to your current work?

The researchers used both indirect and descriptive methods for identifying precursor responses. What were these methods?

Describe each of the probability measures the researchers used. How were these related to each other? Could these be used in your current setting?

What did the authors find was most probable to occur prior to head-hitting behavior? Why is this information important?

When the researchers conducted the functional analysis on the precursor behavior, was the head-hitting behavior eliminated? Why is this important to recognize? What implications does it have for practitioners?

Identifying the precursor behavior can decrease risk resulting from problem behaviors such as self-injurious behavior or aggression. Can you identify a current problem behavior for one of your clients and create a plan for determining precursor behaviors?

Please note that this particular study has only one participant. Sometimes, behavior analysis as a field is criticized for the use of single-subject studies. You can read this previous post  for more on the topic of single-subject studies.

WRITTEN BY SAM BLANCO, PhD, LBA, BCBA

The founder of ABA Journal Club, Sam is an ABA provider for students ages 3-15 in NYC. Working in education for twelve years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges.

Leisure Skills for Adults with Autism

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This month’s ASAT feature comes to us from Megan McCarron, MS, 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 BCBA working in an ABA Teaching Home. I am adept with teaching play skills to younger children but would like some guidance on assessing interests and helping young adults develop hobbies that they can pursue in an independent and meaningful manner.

This is a very important question. There is an abundance of research on how to teach leisure activities using instructional methods such as modeling, video modeling, and activity schedules, moreover, it is vital that careful thought and planning be put into selecting and individualizing leisure activities.

Typically, one’s interests are developed over time via exposure to and interaction with new and varied people, places, and activities. Exposure usually occurs over the course of life without much forethought, resulting in interests that shift and change. Unfortunately, this is often not the case for individuals with autism spectrum disorder (ASD).

There are two key deficits within the diagnostic criteria for ASD that are likely to impact individuals’ exposure to and interaction within varied leisure activities. First, persistent limitations in social communication and social interaction can hinder an individual’s ability to request access to items and activities, and/or to express one’s level of interest. Second, the presence of restricted, repetitive patterns of behavior, interests, or activities may prevent an individual from exploring novel items or activities.

Individuals’ difficulty making or expressing choice limit exposure to new and varied items and activities. Limited interests or those that are markedly different from those of same-aged peers make it that much more difficult to determine ways to expand and develop interests. As a result, careful thought and planning are required to help individuals with autism engage in meaningful leisure activities.

Finding Leisure Activities

Given that there is an unending number of items or leisure activities that could be assessed, it is important to narrow down the field to things that are likely to be of interest before conducting your assessments. A few of these approaches are as follows:

Expand upon current interests. Ask caregivers, teachers, siblings, or others who spend time with the individual to complete an interview, checklist or other type of survey. Create your own questions or use published materials such as the Reinforcer Assessment for Individual with Severe Disabilities (RAISD). Do not immediately discount unusual or idiosyncratic interests. Look to see if there are groups in the community or online that share that interest. If necessary, teach when and where it is okay to engage in preferences that may be annoying to others or are socially stigmatizing. Examples:

Select novel activities that contain components of already preferred activities. Identify common features of known preferences, and then identify novel items or activities that contain the same or similar features. Examples:

Make modifications to existing activities to incorporate the preferred feature of other preferred activities. Examples:

Pair a known interest with a compatible novel activity. Examples:

Identify shared interests. In addition to identifying activities by exploring and expanding upon current interests of the individual, it can be worthwhile to identify interests of the people the individual spends a lot of time with and activities available in the individual’s school, home, and local community. These activities will offer up the opportunity for social interaction with others.

Assessing Activities

Once potential activities are selected, assessments can be conducted to determine how preferred the activities are. While preference assessments are commonly used and talked about in terms of finding reinforcers, they are equally useful for assessing preference levels for potential leisure activities. Initially, free operant assessments are very helpful in terms of assessing potential leisure activities. These can be conducted in the natural environment or a contrived and enriched setting.

Free operant preference assessments can be conducted through direct observation by providing free access to activities without demands, time limits or requirements to use items in a predetermined manner (unless it is a safety issue). Assessments can be conducted in either a natural or contrived setting, as described below (Toner, 2014; Chazin & Ledford, 2016).

Collect data on:

  • Which items/activities the individual interacts with
  • Duration of each interaction
  • Can be helpful to note the individual’s observable signs of positive affect during interactions, such as smiles or laughter
  • If the individual interacts with an item in an unexpected or unusual manner, make note of what he or she did.

Once the free operant assessment data have been collected and ranked in order of which activities were engaged with the most (e.g., by calculating a percentage of time of the observation in which the student engaged in each activity), subsequent paired choice preference assessments or MSWO assessments could be conducted to better assess the individual’s relative preference for activities. With this information, you can make an informed choice about what activities are likely to provide “enjoyment” and thus fit the definition of leisure.

Selecting Teaching Targets for the IEP

It is important to help an individual build a repertoire of activities that can be used to fill the various functions of leisure. Therefore, the activities chosen as a focus of teaching should cover a variety of leisure situations.

  • Social Activities (any activity done with another person).
  • Individual Activity (any activity that can be done alone).
  • Health and Fitness.
  • Longer duration activities.
  • Short duration activities that can be done while waiting (looking at books, magazines, music on phone, etc.)

Some activities may be adaptable enough to be used across several leisure functions. For example, listening to music can be a social or individual activity; it can easily be paired with a variety of health and fitness activities and can be used for short or long durations.

In addition to selecting specific activities/skills for leisure, it is advisable to include an objective in a student’s IEP that targets the individual’s exposure to leisure activities. The goal of this objective would be to have the student continue to try out new activities over three to four opportunities to further expose them to new activities. During the sampling sessions, staff should collect data on duration of engagement, observable signs of affect, and any skill deficits that inhibit engagement.

Considerations for Increasing Functional Independence in Leisure
While identifying preferred activities is a major part of building a leisure repertoire, there are a whole host of skills that can increase an individual’s ability to access and engage in leisure activities as independently as possible.

Ensure the individual has an effective means of communication. An essential skill, regardless of the individual’s vocal verbal ability, is teaching an appropriate way to request access to activities, especially those that are not readily available in the current environment such as requesting to go to the mall or to a specific store (Schneiter & Devine, 2001). Equally important is the ability for an individual to appropriately decline participation and/or end an activity when the activity is not preferred.

Teach prerequisite skills. If a student shows interest in an activity but is not able to fully engage in the activity, it may be necessary to teach the individual specific prerequisite skills. Examples:

If a Sampling Leisure Activities objective has been included in the IEP, the sampling period can be used to help identify what types of prerequisite skills may need to be taught.

  • The individual may need to be taught skills related to any materials or equipment required for an activity. For example, gathering equipment / materials prior to starting the activity; caring for the equipment / materials putting equipment away when finished, and problem solving (e.g., what to do if materials are missing, broken, or need to be replenished).
  • Time management skills, such as identifying when it is time to engage in a leisure activity, selecting an activity that fits the amount of time for leisure, identifying when activities are essential components of increasing independence. Using schedules and calendars can be helpful to structure and prompt leisure activities but may require specific teaching. For example, using a calendar app on a phone can be very useful, but it may be necessary to start off with teaching the student to respond to an alert to engage in an activity and build up to having them enter information into the calendar.

Final Thoughts

Every individual has different interests, abilities, and obstacles to work through in establishing leisure skills. However, building on and expanding from high preference, high availability activities and using evidence-based assessment and teaching strategies to establish independence in leisure activities provides a strong foundation from which to start.

References

Blum-Dimaya, A., Reeve, S. A., Reeve, K. F., & Hoch, H. (2010). Teaching children with autism to play a video game using activity schedules and game-embedded simultaneous video modeling. Education & Treatment of Children, 33(3), 351-370.

Carlile, K. A., Reeve, S. A., Reeve, K. F., & DeBar, R. M. (2013). Using activity schedules on the iPod touch to teach leisure skills to children with autism. Education & Treatment of Children, 36(2), 33-57.

Carr, J. E., Nicolson, A. C., & Higbee, T. S. (2000). Evaluation of a brief multiple-stimulus preference assessment in a naturalistic context. Journal of Applied Behavior Analysis, 33(3), 353-357.

Chan, J. M., Lambdin, L., Van Laarhoven, T., & Johnson J. W. (2013). Teaching leisure skills to an adult with developmental disabilities using a video prompting intervention package. Education and Training in Autism and Developmental Disabilities, 48(3), 412-420.

Chazin, K. T., & Ledford, J. R. (2016). Free operant observation. In Evidence-based instructional practices for young children with autism and other disabilities. Retrieved from http://vkc.mc.vanderbilt.edu/ebip/free-operant

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(1), 15-25.

Google Search. https://www.google.com/search?q=define+leisure&ie=utf-8&oe=utf-8&client=firefox-b-1 (accessed February 5, 2017).

Graff, R. B., & Karsten, A. M. (2012). Assessing preferences of individuals with developmental disabilities: A survey of current practices. Behavior Analysis in Practice, 5(2), 37-48.

MacDuff, G. S., Krantz, P. J., & McClannahan, L. E. (1993). Teaching children with autism to use photographic activity schedules: Maintenance and generalization of complex response chains. Journal of Applied Behavior Analysis, 26(1), 89-97.

Schneiter, R., & Devine, M. A. (2001). Reduction of self-injurious behaviors of an individual with autism: Use of a leisure communication book. Therapeutic Recreation Journal, 35(3), 207-219.

Toner, N. (2014). How do you figure out what motivates your students? Science in Autism Treatment, 11(1), 12-14.

Please use the following format to cite this article:

McCarron, M. (2018). Leisure skills for adults with autism. Science in Autism Treatment, 15(2), 19-26.

About The Author

Megan McCarron M.S., BCBA, LBA (CT) holds a Master of Science Degree in Child Development, is a Board Certified Behavior Analyst, and Licensed Behavior Analyst in the state of Connecticut. She has been in the field of autism treatment since 1992. Megan has experience providing services for children with autism in school, home and community settings. She has worked at Milestones Behavioral Services (formerly, The Connecticut Center for Child Development, Inc.) since 1999. During her time at Milestones, she has served in various capacities. She started out as an instructor and is now a Clinical Director. In addition to her responsibilities in and around Milestones, Megan presents lectures and workshops on autism and Behavior Analysis at local and national conferences.

How Siblings Of Children With Autism Can Help Improve Behaviors

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When I first came across this study, “Behavioral Training for Siblings of Autistic Children,” I was immediately hesitant. There’s something about the idea of sibling-as-therapist that makes me cringe a little bit. When I work with the families of children with autism, the hope is that the siblings of the child with autism still have a childhood without being pushed into the role of caregiver. And I also want the child with autism to have independence and feel like an individual who is heard, which may be more challenging if their siblings are issuing demands just as a parent or teacher would. But as I read the study, I realized that the work they completed had incredible social significance.

In the study, there were three pairs of siblings. The ages of the children with autism ranged from 5 years old to 8 years old. The ages of the siblings ranged from 8 years old to 13 years old. The researchers trained each sibling of a child with autism how to teach basic skills, such as discriminating between different coins, identifying common objects, and spelling short words. As part of this training, the researchers showed videos of one-on-one sessions in which these skills were taught, utilizing techniques such as reinforcement, shaping, and chaining. What the researchers did next was the part that really stood out to me: they discussed with the siblings how to use these techniques in other environments. Finally, the researchers observed the sibling working with their brother/sister with autism and provided coaching on the techniques.

It should be noted here that the goal of the study was not to have the siblings become the teacher of basic skills. Instead, it was to provide a foundation of skills in behavioral techniques for the sibling to use in other settings with the hope of overall improvement in the behaviors of the child with autism. The researchers demonstrated that, after training, the siblings were able to effectively use prompts, reinforcement, and discrete trials to effectively teach new skills. But, perhaps the most meaningful aspects of the study were the changes reported by both siblings and parents. The researchers provide a table showing comments about the sibling with autism before and after the training. One of the most striking comments after the training was, “He gets along better if I know how to ask him” (p. 136). Parents reported that they were pleased with the results and found the training beneficial.

This study provides excellent evidence that structured training for siblings has real potential for making life a little easier for the whole family. The idea isn’t that they become the therapist, but instead that knowledge truly is power.

REFERENCES

Schriebman, L., O’Neill, R.E. & Koegel, R.L. (1983). Behavioral training for siblings of autistic children. Journal of Applied Behavior Analysis. 16(2), 129-138.

WRITTEN BY SAM BLANCO, PhD, LBA, BCBA

Sam is an ABA provider for students ages 3-15 in NYC. Working in education for twelve years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges