What Autism Awareness Should Be About

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.

—————————————————————————————————————-

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.

ABLLS-R® Skill Acquisition Program Manuals (Book 1 & 2)

The development of these manuals is a culmination of years of clinical work involving direct ABA intervention, teaching, coaching, training, and clinical oversight to teams delivering ABA intervention.

I have always enjoyed seeing students’ progress in their learning – knowing that the foundation of ‘good teaching’ is not only based on proper training, supervision, coaching and modelling – but also a standardized teaching approach that can be individualized for each student.

With a multitude of approaches and teaching methods being used to impact the potential of a student’s learning and success, I became inspired to create a series of step-wise, quality Skill Acquisition Teaching Plans that provided a framework of consistency for Instructors and teachers who were working with the students.
I am excited to share with you the ABLLS-R® Skill Acquisition Program Manuals – created as companion manuals to Dr. James Partington’s Assessment of Basic Language and Learning Skills – Revised (ABLLS R ®). We are confident that these plans will provide users a consistent framework for skill assessment, skill teaching and skill tracking for students with autism spectrum disorders.
In conjunction with the ABLLS-R®, the contents of the manuals provide information for each of the Task Codes in the ABLLS-R® curriculum for how to:

• Assess baseline performance levels for skills/tasks within the ABLLS R®
• Arrange the teaching environment for optimal teaching and learning
• Set up and administer prompts
• Implement and embed various teaching strategies to teach a skill
• Use Error Correction Procedures
• Collect data to measure and monitor progress

Both manuals include Companion Forms and Data Templates that are used along with the written Skill Acquisition Teaching Plans. These documents offer a user-friendly structure for setting up a student’s program binder, as well as information for how to organize necessary information for teaching and monitoring student progress.
We trust you will find as much value in these manuals as we have, and that you will see continued success with your students learning.

The ABLLS-R® Skill Acquisition Program Manuals are currently available for pre-order. Head to our site for more details! 


About The Author 

Tammy J. Frazer is a Board Certified Behavior Analyst with over 18 years of experience working with individuals with autism and developmental disorders. She earned a Masters of Arts in psychology with a specialization in Applied Behavior Analysis from the University of Nevada, Reno and has been a BCBA since 2007. Tammy is the Founder and Director of On Solid Ground Inc, an organization in Barrie, Ontario that is committed to the delivery of quality, effective, and evidence based behavior assessment and intervention to individuals with autism and developmental disorders and delays.

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.

What Autism Awareness Should be About

In this month’s ASAT feature, Executive Director David Celiberti, PhD, BCBA-D, offer, OPs his thoughts on expanding autism awareness once April has ended. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Autism Awareness Month will soon come to a close. The blue puzzle pieces will disappear from Facebook pages and billboards, the media will focus their attention on other topics of interest, and we will return to business as usual. And business as usual is not OK, particularly given that so many children and adults with autism are not accessing the most effective, science-based interventions that will allow them to realize their fullest potentials.

When I first entered the field over twenty-five years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with “artistic” children. Today, autism is no longer the rare diagnosis that impacts someone else’s child. Our extended families, our neighbors, and our co-workers are now all touched by autism. With 1 in 68 children receiving a diagnosis, the sheer number of individuals with autism is staggering and heightens awareness in and of itself.

For many conditions, awareness is key because awareness promotes detection, and with detection comes a relatively clear path towards treatment. Take, for example, conditions such as Lyme disease and many forms of cancer. Better prognoses are attached to early detection. Within a few short weeks of detection and diagnosis, patients typically receive science-based treatment. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen. In the world of autism, detection is not the “be all and end all.” We do not just have a detection issue in autism, but also, and perhaps more importantly, we have an intervention issue.

It is my hope that the conversation about autism awareness will be broadened to focus upon and overcome the obstacles that separate individuals with autism from effective, science-based intervention, and that those that separate their families, caregivers, and teachers from accurate information about autism intervention.

I leave you with 10 ideas about what “autism awareness” should be about.

  1. “Autism Awareness” should recognize the need to differentiate effective treatments that are scientifically validated from the plethora of “therapies” and “cures” lacking scientific support. Autism treatment has become a multi-million dollar industry with 500+ alleged treatments and thus, science sadly placed on the back burner. This means that heart wrenching testimonials, surveys that are pawned off as scientific research, and outrageous claims abound, making it challenging for parents to determine the best course of action for their child. The aggressive marketing of these “therapies” and “cures” is absolutely overwhelming for parents who are desperate for accurate information to help their children realize their fullest potential. For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice. Such safeguards are not yet well established for autism treatment.

 

  1. “Autism Awareness” must recognize the responsibility that we have, as a society, to make sound choices.I use the term “society” given the myriad of stakeholders who make critically important decisions for persons with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, elected officials and even tax payers. Decision-making power comes with tremendous responsibility. There are far too many individuals with autism who are not receiving effective treatment, are receiving ineffective treatment, or are subjected to treatments that are, in fact, dangerous. Every minute of ineffective intervention is one less minute spent accessing effective intervention.   Choices made have profound implications.

 

* Please see the questions that appear at the end of this article to promote more careful decision making at https://www.asatonline.org/pdf/roadless.pdf

 

  1. “Autism Awareness” must recognize that available information (and information providers) varies greatly in accuracy.As we know, not all information on the Internet is reliable and accurate. Often Internet information is deemed equivalent in relevance, importance, and validity, to research published in peer-reviewed scientific journals. It is not.

 

  1. Autism Awareness” must include careful and responsible reporting by journalistsThere are dozens of “miracle cures” and “breakthroughs” for autism that receive widespread media attention, even if they have not been proven effective. Unfortunately, treatments actually shown to be effective typically receive the least amount of media attention. It is hard to imagine that things will improve dramatically for the autism community in the absence of more accurate representations of autism treatment in the media.

 

* You will find examples of accurate and inaccurate reporting at https://www.asatonline.org/for-media-professionals/about-media-watch/ ASAT is undertaking proactive steps to enhance accuracy in media reporting.

 

  1. “Autism Awareness” should recognize the critical need for newly diagnosed children to access effective treatment as soon as possible.We also know that we have a limited window of time to prepare children for the least restrictive setting once they enter public school. 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. That must change.

 

  1. “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, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as applied behavior analysis (ABA) can effectively help children and adults with autism realize their fullest potential. The conversation about “cure” often delegitimizes and derails important conversations about how we can help individuals with autism live and work independently, develop meaningful and sustainable relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits that are available within their communities. Those are important conversations to have.

 

  1. “Autism Awareness” must mandate accountability from all treatment providers. 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 regardless of their discipline. 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 no-transparent manner. No one should be permitted to boast claims that they cannot demonstrate through data. These unfortunate realities should not be tolerated.

 

  1. “Autism Awareness” must involve recognition that an abundance of clinical research already exists.Too often the plethora of peer-reviewed research that could guide and inform treatment efforts is disregarded altogether. If treatment providers and consumers are interested in published research on diverse topics such as improving conversation skills, promoting academic skills, eliminating pica, or developing tolerance for dental procedures, they can find it. Thousands of researchers have worked hard at publishing their findings in peer reviewed journals and their findings are often overshadowed by a media that practices sensationalism to provide consumers with information about the “next big thing” in autism treatment.

 

  1. “Autism Awareness” should help us identify and overcome the barriers that face our families everyday.Not every child with autism is invited to birthday parties. Not every faith community welcomes families of children with autism. Not every school provides meaningful contact between students with autism and their typically developing peers. Not every community provides recreational opportunities for individuals with autism. The absence of these opportunities is both a function of misinformation about autism and the lack of awareness about the successful efforts of others who have overcome such barriers. With 1 in 68 children being diagnosed, every facet of society would benefit from evaluating what they are doing, what they are not doing, and what they could be doing differently.

 

  1. “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. 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. The Association for Science in Autism Treatment has committed to broadening its scope to be a part of an important dialogue about adults with autism.

We all play a role in bettering the lives of individuals with autism and helping their families and supporters become skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important conversations and an even bigger part of the solution.

 


David Celiberti, PhD, BCBA-D, is the part time Executive Director of ASAT and Past-President, a role he served from 2006 and 2012. He is the Co-Editor of ASAT’s newsletter, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis, and early childhood education, and been an active participant in local fundraising initiatives to support after school programming for economically disadvantaged children. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to applied behavior analysis (ABA) at both the undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.

Is Inclusive Education Right for Children with Disabilities?

This week, we’re honored to feature an article by Edward Fenske, MAT, EdS, the former executive director of the Princeton Child Development Institute, who shares his critique on the U.S. Departments of Health and Human Services and Education’s joint statement on inclusive education for all children with disabilities. Ed’s extensive experience in delivering intervention to children with autism, support services to their families, and training and supervision to professional staff spans 39 years. His published works address home programming, language development, and early intervention.

Is Inclusive Education Right for My Child with Disabilities?
by Edward Fenske, MAT, EdS
Princeton Child Development Institute

On September 14, 2015 the U.S. Department of Health and Human Services and the U.S. Department of Education issued a joint policy statement recommending inclusive education for all children with disabilities begin during early childhood and continue into schools, places of employment, and the broader community. The policy includes numerous assertions about the educational benefits and legal foundation of inclusion and a lengthy list of supporting evidence. This paper examines some of these assertions, the supporting evidence, and comments on the departments’ recommendation.

 

Assertion: Children with disabilities, including those with the most significant disabilities and the highest needs, can make significant developmental and learning progress in inclusive settings.

Supporting Evidence: Green, Terry, & Gallagher (2014). This study compared the acquisition of literacy skills by 77 pre-school students with disabilities in inclusive classrooms with 77 non-disabled classmates. Skill acquisition was assessed using pre/post intervention scores on the Peabody Picture Vocabulary Test, Third Edition (Dunn & Dunn, 1997) and the Phonological Awareness Literacy Screening Prekindergarten (Invernizzi, Sullivan, Meier, & Swank, 2004). The results found that children with disabilities made significant gains that mirrored the progress of their typical classmates, although the achievement gap between the two groups remained. Participants had a variety of diagnoses (e.g., developmental delays, autism, pervasive developmental disorder-not otherwise specified, speech and language impairments, cognitive impairments, and Down syndrome). There were several requirements for participation in this study that would appear to severely limit conclusions. Participants with disabilities were functioning at social, cognitive, behavioral and linguistic levels to the extent that their Individual Education Program (IEP) teams recommended participation in language and literacy instruction in the general education classroom with typical peers-an indication that these skills were considered prerequisite to meaningful inclusion.

A further restriction for participation was that only data from children who were able to complete the tasks according to standardized administrative format were included in the study. It is therefore unclear whether all students with disabilities in these inclusive preschool classes made significant developmental and learning progress. The authors suggest that had the lower achieving students received explicit, small group or individual instruction, the achievement gap between typically developing students and children with disabilities may have been narrowed. We can therefore conclude that regular instruction provided in the inclusive preschool classes in this study was not sufficient for all students with disabilities. Furthermore, because the results were not separated by disability, it is not possible to determine whether there was a significant difference in learning across disabilities.

Assertion: Some studies have shown that children with disabilities who were in inclusive settings experienced greater cognitive and communication development than children with disabilities who were in separate settings, with this being particularly apparent among children with more significant disabilities.

Supporting Evidence: Rafferty, Piscitelli, & Boettcher (2003). This study described the progress in acquiring language skills and social competency of 96 preschoolers with disabilities attending a community-based program. Sixty-eight participants received instruction in inclusive classes and 28 attended segregated special education classes. Progress was assessed using pretest and posttest scores from the Preschool Language Scale-3 (Zimmerman, Steiner, & Pond, 1992) and the Social Skills Rating System (SSRS)–Teacher Version (Gresham & Elliott, 1990). Level of disability (i.e., “severely disabled” or “not severe”) was determined by scores on the Wechsler Preschool and Primary Scale of Intelligence (WPPSI-R), but the authors did not provide any information about the participants’ specific clinical diagnoses. Posttest scores were comparable for “not severe” students in both class types. Children with “severe” disabilities in inclusive classes had higher posttest scores in language development and social skills than their peers in segregated classes, but had higher rates of problem behavior. The extent to which problem behavior interfered with learning for both typical children and those with disabilities was not addressed. Problem behavior, such as tantrums, aggression, stereotypy, self-injury, property destruction and defiance; is displayed by some children with disabilities. These behaviors have very different implications for preschool-aged children than for older children. In this writer’s experience, severe problem behavior is extremely resistant to change when not successfully treated during preschool years and may ultimately result in more restrictive academic, vocational and residential placement during adolescence and adulthood. The significance of any academic gains by children with disabilities in inclusive settings should be carefully weighed against the long-term implications of unchecked maladaptive behavior.

Continue reading

Autism Awareness Month: Free Cookie Number Matching Printable

Cookie-Jar-Number-MatchingIf Cookie Monster could play any math literacy game, we’re sure this free Cookie Jar Number Matching activity would be the winner! This free printable from Totschooling.net includes three representations of numbers one through ten to help build counting and number recognition skills.

To play, all you have to do is print all the pages and cut out each cookie individually. You can then have the student either match cookies to the jar containing the written names of the numbers or the jar containing the corresponding numerals.  If you want to make the activity even more challenging, you can print out an extra numeral jar or an extra number name jar page and cut out each circle to create more options to match!

cookie-matching 2You can download the free printable by clicking here and don’t forget to share with us all the other creative ways you and your students build math literacy skills!

Autism Awareness Month: Free Social Skills Fortune Teller Activity

IMG_0882-764x1024While these fortune tellers may not be able to tell your future, they are sure to help your children with autism develop their social skills!  This free printable, created by Joel Shaul from Autism Teaching Strategies, makes social learning fun by having students pair up and offer conversation starters using a Social Skills Fortune Teller.  All you have to do is print, cut, fold and play!

The activity comes with separate templates to make six different fortune tellers.  Each of the templates help students work on the following skills:

  • Asking questions
  • Giving compliments
  • Talking about emotions
  • As well as self-help strategies for teasing and bullying.

For further tips, instructions for use, and to download this free printable, click here and don’t forget to share all the other fun ways you and your students have fun developing social skills by leaving a comment below!

Autism Awareness Month: Free Crayon Number Sorting Activity

crayon 1Get creative with this free number sorting activity designed by Lavinia Pop from In My World! This crayon inspired printable includes five different representations of a single number.  These symbols include line segments, dots, words, finger counting, as well as numerals.

To create the crayon pouches, simply cut around the outer edges and fold along the dotted center line.  Then glue, tape or staple the remaining bottom and side edges.  Once complete, cut out all the crayons and mix to start sorting!crayon 2We recommend printing the activity on cardstock or laminating the crayons and pockets for longer use.

To download this free printable click here and for more math literacy activities and ideas, you can read the full post from In My World here!

Autism Awareness Month: Free Owl Opposites Flashcard Activity

Encourage your students’ cognitive, language and word recognition skills with this free Owl Opposites Flashcards Printable from 1+1+1=1!

owl 1The entire set features an adorable pair of owl friends who demonstrate the following sixteen different opposites:

  • Short/tall
  • Hot/cold
  • Slow/fast
  • White/blackowl 2
  • Big/small
  • Clean/dirty
  • More/less
  • Dry/wet
  • Same/different
  • Light/heavy
  • Low/high
  • Hard/soft
  • Short/long
  • Front/back
  • Empty/full
  • Weak/strong

Laminate or print on cardstock for longer use and attach on a metal ring to keep the cards all together.

To print out your free Owls Opposites Flashcards, click here. We hope you and your students have a hoot with this printable!

The Social Problem-Solving Model: Promoting Greater Social Independence – Part II

In continuing our exclusive social problem-solving series, Drs. Gordon and Selbst, developers of the new POWER-Solving® Curriculum, have addressed the importance of social information processing as a framework for understanding how children and adolescents get along with their peers and adults.

The Social Problem-Solving Model: Promoting Greater Independence – Part II
Steven B. Gordon, PhD, ABPP & Michael C. Selbst, PhD, BCBA-D

Social Information Processing (SIP) is a widely studied framework for understanding why some children and adolescents have difficulty getting along with their peers and adults.

A well-known SIP model developed by Crick and Dodge (1994) describes six stages of information processing that individuals cycle through when responding to a particular social situation:

  1. encoding (attending to and encoding the relevant cues);
  2. interpreting (making a judgment about what is going on);
  3. clarifying goals (deciding what their goal is in the particular situation);
  4. generating responses (identifying different behavioral strategies for attaining the decided upon goal);
  5. deciding on the response (evaluating the likelihood that each potential strategy will help reach their goal, and choosing which strategy to implement);
  6. and performing the response (doing the chosen response).

These steps operate in real time and frequently outside of conscious awareness. Many studies have demonstrated that children and adolescents have deficits at multiple stages of the SIP model which impact their development of appropriate peer interactions and the development of aggressive behaviors (Lansford, Malone, Dodge, Crozier, Pettit and Bates, 2006).

As a result, they have difficulty attending to and interpreting social cues, adopting pro-social goals and utilizing safe, effective and non-aggressive strategies to handle conflict situations. The development of strong social skills has been shown to contribute to the initiation and maintenance of positive relationships with others.

POWER-Solving BooksThe POWER-Solving® Curriculum (Selbst and Gordon, 2012) is heavily influenced by the components of the SIP model as seen in the five steps of POWER-Solving, easily learned in the acronym POWER:

  • Put the problem into words;
  • Observe your feelings;
  • Work out your goal;
  • Explore possible solutions;
  • Review your plan

The curriculum is comprised of several modules, each with their own materials for facilitators and students. While it is critical for the student to learn the POWER-Solving® Steps first (i.e., the “toolbox”), the facilitator can determine the sequence of the subsequent modules. For example, one may prefer to move to the Anger Management module after the introduction. Alternatively, one may decide to move to Social Conversation or Developing Friendships. The goal is for students to learn valuable POWER-Solving skills that they can apply to an infinite number of social situations throughout their lives.

REFERENCES

Crick, N.R., & Dodge, K.A. (1994). A review and reformulation of social information-processing mechanisms in children’s social adjustment. Psychological Bulletin, 115(1), 74–101. doi:10.1037/0033-2909.115.1.74.

Lansford, J.E., Malone, P.S., Dodge, K.A., Crozier, J.C., Pettit, G.S., & Bates, J.E. (2006). A 12-year prospective study of patterns of social information processing problems and externalizing behaviors. Journal of Abnormal Child Psychology, 34, 715-724.

Selbst, M.C. and Gordon, S.B. (2012). POWER-Solving: Stepping stones to solving life’s everyday social problems. Somerset, NJ: Behavior Therapy Associates.

ABOUT STEVEN B. GORDON, PHD, ABPP

Steven B. Gordon, PhD, ABPP is the Founder and Executive Director of Behavior Therapy Associates, P.A. He is a clinical psychologist and is licensed in New Jersey. Dr. Gordon is also Board Certified in Cognitive and Behavioral Psychology by the American Board of Professional Psychology and is a Diplomate in Behavior Therapy from the American Board of Behavioral Psychology. Dr. Gordon has co-authored three books, published numerous articles, presented papers at local and national conferences, and served on editorial boards of professional journals. Most recently, Dr. Gordon and Dr. Selbst have co-authored the new social-emotional skills program POWER-Solving: Stepping Stones to Solving Life’s Everyday Social Problems. Dr. Gordon’s professional interests range from providing assessment and treatment for individuals diagnosed with Autism Spectrum Disorders, AD/HD and other disruptive behavior disorders associated with childhood and adolescence. He has co-founded and is the Executive Director of HI-STEP® Summer Program, which is an intensive five-week day program for children to improve their social skills and problem solving ability. In addition, Dr. Gordon has had extensive experience providing clinical services not only for children diagnosed with phobias, stress, selective mutism, obsessive compulsive disorders and depression, but also with adults coping with anxiety,depression and relationship difficulties. Dr. Gordon is a member of the American Psychological Association, the Association for Behavioral and Cognitive Therapies, and the New Jersey Psychological Association.

ABOUT MICHAEL C. SELBST, PHD, BCBA-D

Michael C. Selbst, PhD, BCBA-D is Director of Behavior Therapy Associates, P.A. He is a Licensed Psychologist and a Certified School Psychologist in New Jersey and Pennsylvania. He is also a Board Certified Behavior Analyst at the Doctoral level. Dr. Selbst has co-founded and is the Executive Director of HI-STEP® Summer Program, which is an intensive five-week day program for children to improve their social skills and problem solving ability, and the Director of the Weekend to Improve Social Effectiveness (W.I.S.E.). He has extensive experience working with pre-school aged children through adults, including individuals who have social skills deficits, emotional and behavioral difficulties, learning disabilities, gifted, and children with developmental delays, including those with Autism and Asperger’s Syndrome. Dr. Selbst consults to numerous public and private schools, assisting parents, teachers, and mental health professionals, and presents workshops on all topics highlighted above, as well as Parenting Strategies, Depression, and Suicide Prevention. Dr. Selbst and Dr. Gordon have co-authored the new social-emotional skills program POWER-Solving: Stepping Stones to Solving Life’s Everyday Social Problems. Dr. Selbst is a member of the following professional organizations: American Psychological Association; National Association of School Psychologists; Association for Behavioral and Cognitive Therapies; Association for Behavior Analysis International; Association for Contextual Behavioral Science; New Jersey Psychological Association; and New Jersey Association of School Psychologists.