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 http://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 http://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.

Ecological Assessment For Successful School Inclusion Settings

School learning communities are dynamic and complex, and meeting the challenge requires a detailed understanding of how such communities work, a task that is ideally suited to Ecological Assessment. Ecological Assessment for successful school inclusion settings can be a vital part of the structure of maintaining scientifically-grounded, evidence-based practices in schools. Like functional assessment, Ecological Assessment uses the tools of Applied Behavior Analysis – behavioral definitions, direct observation and data collection, task analysis, simple statistical analysis, structured interviews – and applies them to the ecosystem of the classroom and other settings in schools.

ecological assessment for successful school inclusion settings

In 2007, Cooper, Heron, & Heward wrote: “An ecological approach to assessment recognizes the complex interrelationships between environment and behavior. In an ecological assessment a great deal of information is gathered about the person and the various environments in which that person lives and works. Among the many factors that can affect a person’s behavior are physiological conditions, physical aspects of the environment (e.g., lighting, seating arrangements, noise level), interactions with others, home environment, and past reinforcement history. Each of these factors represents a potential area for assessment.” (p. 55)

Ecological Assessment has been discussed in behavior analysis for at least the past 45 years. Wallace and Larson (1978) described Ecological Assessment as referring to the analysis of an individual’s learning environment and his/her interactions within and across these settings. In stressing the importance of ecological assessment, Hardin (1978) said that “appropriate and effective intervention cannot occur without an adequate understanding of the child and his or her environment.” Heron and Heward (1988) pointed out that sometimes students’ situations warrant comprehensive study, saying, “…some students’ learning/behavior difficulties are subtle and complex and, thus, necessitate a more global assessment to ensure the most appropriate instructional approach.”  They suggested that Ecological Assessment should be based on various sources of information such as student records, interviews, formal and informal tests, and direct observation, and include an examination of specific influences within a setting such as:

  • Spatial Density
  • Seating Arrangement
  • Noise
  • Student-Student Interaction
  • Classroom Lighting
  • Teacher-Student Interaction
  • Home Environment
  • Reinforcement History

According to Carroll (1974) a model of Ecological Assessment consists of six steps:

  1. “Delineation of the assessment goals (i.e., identify the data to be collected and how they will be used)
  2. Formation of a conceptual framework within which to assess the learner and the environment (i.e., identify the relative importance of learner and environmental factors)
  3. Implementation of the assessment plan (i.e., conduct direct observations, inspect work samples or products)
  4. Evaluation of assessment results
  5. Development of a set of hypotheses (i.e., relationships between student behavior and identified learner characteristics and environmental factors)
  6. Development of a learning plan (i.e., an intervention strategy designed to match learner characteristics with appropriate environmental settings).”

Like functional assessment, Ecological Assessment is part of an analysis involving students and the environment. While functional assessment identifies specific behaviors (usually problem behaviors) exhibited by a student as the target of the assessment, Ecological Assessments have both a setting focus and a student focus. Ecological Assessments study the nature of all behaviors required to be reinforced in a particular setting and the specific circumstances under which those behaviors must occur. It then compares these requirements to the abilities and experiences of the student. The central question in an Ecological Assessment is, “What does the student need to do to succeed?”


Why Conduct an Ecological Assessment?

There are many reasons to conduct an Ecological Assessment:

  • With students making transitions between programs, Ecological Assessments can supplement the typical discussions between sending and receiving teams, providing formal observations, data-taking, setting inventories, and structured interviews that allow for a smoother transition
  • For students who are less-than-engaged in class and exhibit off-task behavior, Ecological Assessments help teachers identify and eliminate the barriers to on-task behavior and, as efforts are made to resolve issues, provide both a baseline and a convenient on-going monitoring vehicle for both the student’s behavior and any continued existence of the barriers
  • When evaluating student readiness, Ecological Assessments identify the key skills actually reinforced in target environments, so that specific, concrete, realistic preparations can be implemented


The Future of Ecological Assessment

Educational teams in schools tackle problems encountered in inclusion settings every day, both from the assessment side and the student preparation side. While Ecological Assessment has been frequently discussed as a valuable tool and would seem to be ideal for gaining a detailed understanding of environmental barriers and challenges in classrooms and other inclusion settings, there is little established structure to guide clinical implementation.

At this point, one Ecological Assessment is very likely to look completely different from another. Like functional assessment, Ecological Assessment in the future must take on recognized and validated structure that is data-based, reliable, and highly descriptive of setting characteristics and related student abilities. Insights into how to provide meaningful student inclusion experiences depend on well-developed tools that synthesize and easily communicate information about complex challenges.

Well-structured Ecological Assessments will provide a vital means of approaching inclusion that, in addition to providing a detailed analysis, will create a structure that can extend well beyond the initial decision-making phase of programming, and, without a doubt, promises to contribute enormously to student program development.

 


For more on Ecological Assessment, check out our newest product by Fovel, the SEAT!

seat

This innovative new protocol and manual provides essential structure to facilitate ecological assessment of inclusion settings that is systematic with ABA principles and straightforward to implement. This assessment tool is a must for practitioners and educational teams at all levels and grades, who need to design, and evaluate student inclusion experiences using evidence-based methodologies.

This week only, get the SEAT for 15% off with promo code SEATNEW.

 

WRITTEN BY J. TYLER FOVEL, M.A., BCBA

Tyler Fovel has worked in the field of Applied Behavior Analysis for over 40 years, with all ages of students and with dozens of educational teams. He has published manuals on educating students with autism and related developmental disabilities: The ABA Program Companion and The New ABA Program Companion (DRL Books). He lives in Massachusetts with his wife, Jan, and their golden retriever, Lucy. 

 

Preventing Bullying of Students with ASD

Did you know that October is National Bullying Prevention Month? In an effort to raise awareness around issues of bullying for students with autism, we’re honored to feature this article on preventing bullying of students with ASD by Lori Ernsperger, PhD, BCBA-D, Executive Director of Behavioral Training Resource Center, on some tips and information for parents on protecting their children from disability-based harassment in school. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!


We have a nine-year old daughter with ASD who started 3rd grade in a new school. She is coming home every day very upset due to other students calling her names and isolating her from social activities. We wanted her to attend the neighborhood school but how can we protect her from bullying?

Answered by Lori Ernsperger, PhD, BCBA-D

Unfortunately, bullying and disability-based harassment is a common issue for individuals with ASD. As parents, you have a right to insure that the school provides a multitiered framework of protections for your daughter to receive a free appropriate public education (FAPE) in the least restrictive environment and free from disability-based harassment. Start with educating yourself on the current legal requirements and best practices for preventing bullying in schools.

Preventing Bullying of Students with ASD

Recognize
Recognizing the startling prevalence rates of bullying for students with ASD is the first step in developing a comprehensive bullying and disability-based harassment program for your daughter. According to the Interactive Autism Network (IAN, 2012), 63% of students with ASD were bullied in schools. An additional report from the Massachusetts Advocates for Children (Ability Path, 2011) surveyed 400 parents of children with ASD and found that nearly 88% reported their child had been bullied in school. According to Dr. Kowalski, a professor at Clemson University, “because of difficulty with social interactions and the inability to read social cues, children with ASD have higher rates of peer rejection and higher frequencies of verbal and physical attacks” (Ability Path, 2011).

In addition to recognizing the prevalence of bullying of students with ASD in schools, parents must also recognize the complexities and various forms of bullying. Bullying of students with ASD not only includes direct contact or physical assault but as with your daughter’s experience, it can take milder, more indirect forms such as repeated mild teasing, subtle insults, social exclusion, and the spreading of rumors about other students. All adults must recognize that laughter at another person’s expense is a form of bullying and should be immediately addressed.

Finally, recognizing the legal safeguards that protect your daughter is critical in preventing bullying. Bullying and/or disability-based harassment may result in the violation of federal laws including:

  1. Section 504 of the Rehabilitation Act of 1973 (PL 93-112)
  2. Title II of the Americans with Disabilities Act of 2008 (PL 110-325)
  3. The Individuals with Disabilities Education Improvement Act (IDEA) of 2004 (PL 108-446)

The Office of Civil Rights (OCR), along with the Office of Special Education and Rehabilitative Services (OSERS), have written guidance letters to all schools to clarify that educational institutions are held legally accountable to provide an educational environment that ensures equal educational opportunities for all students, free of a hostile environment. Any parent can access and print these Dear Colleague Letters and distribute them to school personnel working with their child.

  • US Department of Education/Office of Civil Rights (October 2014)
  • US Department of Education/Office of Special Education and Rehabilitative Services (August 2013)
  • US Department of Education/Office of Civil Rights (October 2010)
  • US Department of Education (July 2000)

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Regulating Sleep in Children with Autism

With the new school year in session, it’s especially important to regulate sleep in students. In this month’s ASAT feature, Lauren Schnell, MA, BCBA, offers insight on a variety of approaches parents can take to address sleep disturbances in their kids with autism. 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 home program coordinator who works with a six-year old child diagnosed with autism. The parents are concerned because their child struggles at bedtime and will often wake up in the middle of the night to come into their room. The parents want their child to stay asleep and have tried everything to get him to stay in bed all night. What can I suggest they do to treat their child’s sleep behavior?

Answered by Lauren Schnell, MA, BCBA

Sleep disturbances in children with autism are a common concern for many parents. It has been estimated that approximately 25% of typical children between the ages of one and four struggle with nighttime wakings (Lozoff, Wolf, & Davis, 1985). For children with special needs, the number increases dramatically with upwards of 80% experiencing some type of sleep problems (Lamberg, 1994). Of those who frequently wake at night, the majority end up sleeping in their parent’s bed and the sleep problems often persist over time.

Regulating Sleep in Children with Autism

The good news is there are a variety of behavior analytic approaches found to be effective in addressing sleep disturbances in children with autism. An underlying premise of these approaches is that poor sleep patterns are learned, and, as such, can be unlearned.

Prior to implementing a behavioral sleep program, it is important to first rule out any medical reasons for the sleep disturbance, such as physical discomfort related to an illness. Discussions with a pediatrician should help to determine if the sleep issues may be associated with an underlying medical issue and if further testing or evaluation is warranted.

If the sleep issues are thought to be behavioral, the first step is to complete a sleep log to determine the extent of the problem and potential environmental factors that may be adversely affecting the child’s sleep. A sleep log outlines the time the individual is put into bed, the actual time he/she falls asleep, frequency of night wakings, and the duration of those awakenings. Additional information may be collected on any other behaviors which are observed during bedtime, such as tantrums during the bedtime routine or disruptive behavior during the night. Baseline data collection should continue until a consistent pattern of sleep (or lack thereof) or challenging behavior is apparent. This information can later be used to assess the effectiveness of the sleep intervention.

Some questions which may be helpful for parents in completing the sleep log are:

  • What time does the child go to bed?
  • What does the child do leading up to bedtime?
  • What else is going on in the home while the child is in bed which could be influencing his/her sleep?
  • What activities does the child engage in prior to falling asleep?
  • What time does the child awaken during the night as well as in the morning?
  • Does the child take naps during the day?

Based upon the results of the baseline data collected in the sleep log, a number of interventions may be considered. Below are several practical strategies which may be helpful to improve the sleep behavior of the child with autism.

Bedtime Routines
A bedtime routine can be helpful for the child, as it creates predictability in the sequence of activities leading up to bedtime. A written or visual schedule may be helpful in ensuring the routine is consistently followed. The schedule should outline activities preceding bedtime; for example, brushing teeth, changing into pajamas, saying goodnight to loved ones, and reading a bedtime story. The routine should begin at least 30-60 minutes prior to bed time. It is also recommended that parents eliminate all foods and drinks containing caffeine at least six hours prior to bed, and avoid rigorous activities during the later evening hours.

Initially, the child may need a high rate of positive reinforcement for following the routine. Eventually, the parent may consider providing the child with positive reinforcement the following morning if he/she successfully follows the nighttime activity schedule and remains in bed throughout the night. Such reinforcement might include earning access to a favorite breakfast cereal, a toy, or getting a sticker to put on a special chart upon waking (Mindell & Durand, 1993). Continue reading

Tip of the Week: Things You Should Know About BCBAs

Things You Should Know About BCBAsMaybe you’ve never heard of Board Certified Behavior Analysts (BCBAs), or you’ve heard of them frequently but never been provided an explanation of how a BCBA differs from an ABA therapist. Here are a few things you should know:

  • BCBAs are required to take extensive coursework in applied behavior analysis and complete 1500 hours of supervised work. Furthermore, they are required to take a difficult comprehensive exam at the end of their coursework and supervision hours. Once they have completed the hours and passed the exam, they are officially a BCBA.
  • BCBAs must complete 32 units of continuing education every two years. There is a requirement that some of these hours pertain to ethics, but the rest can be focused on skills such as addressing verbal behavior, feeding issues, aggressive behaviors, and more.
  • BCBAs are required to utilize evidence-based practice. A BCBA should be aware of current research in the field and should be able to easily reference the literature when encountering a difficult problem or working on an intervention.
  • One of my favorite parts of the ethical code for BCBAs is that “clients have a right to effective treatment.” Your BCBA should be taking data and implementing interventions that are effective in creating behavior change for clients. If an intervention is not working, then adjustments should be made.

The goal of Behavior Analyst Certification Board is to ensure appropriate training and accountability for behavior analysts.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

Tip of the Week: How to Maintain a Fast Pace of Instruction

How to Maintain a Fast Pace of InstructionThere is a common misconception that individuals with special needs require a slower pace of instruction. While they may require a slower pace through a curriculum, this does not mean that individual lessons should be taught at a slower pace. In fact, slowing the pace of instruction not only wastes precious instructional time, it may increase the occurrence of problem behaviors.

Higbee (2009) writes that “appropriately paced instruction helps students to maintain attention to the instructor and instructional materials. Though student attention can be lost when instruction is happening too rapidly, it is most often lost when the pace of instruction is not rapid enough” (p. 20).

So how can you maintain a fast pace of instruction that is appropriate for your student? Here are some things to consider:

  1. Prepare! Set out your materials in such a way that they are easy to access quickly. I keep all the mastered skills on index cards so I can easily add maintenance questions into instruction. Organization is often the simplest way to increase efficiency in your session.
  2. Take data. You want to increase attention and decrease problem behaviors. Try different paces of instruction and measure the behaviors you are wanting to change. For instance, if I have a student who is often grabbing for my shirt during a session, I may try a pace of instruction that includes 15 questions each minute, then try a pace of 20 questions per minute, another of 25 per minute. Next, I will compare the rates of grabbing for my shirt with each pace of instruction. Remember, these aren’t 15 questions for the target skill; some mastered skills will be intermixed.
  3. Record a session. By taking video of yourself working with a child, you may see opportunities for increasing efficiency on your own. You may also observe specific times at which problem behaviors tend to increase, then be able to target those specifically. For instance, perhaps problem behaviors occur when you turn to write data in a binder, but didn’t recognize that pattern until you watched a recording later.
  4. Use reinforcement effectively. Usually, pace of instruction in and of itself will not change behavior. Instead, pair it with reinforcement and be systematic with how you implement reinforcement. We’ve talked about reinforcement here on the blog a lot, so you can read about that in more detail here.
  5. If possible, get input from supervisors or the individual you are working with. Supervisors may be able to observe your session and provide insight on how to increase your pace of instruction. And the individual you are working with may be communicating that they are bored through misbehavior, stating “I’m bored,” or nonvocal behaviors such as yawning. This may be an indication that you need to provide more challenging material or increase the pace of instruction.

REFERENCES

Higbee, T. (2009). Establishing the prerequisites for normal language. In R. A. Rehfeldt, Y. Barnes-Holmes, & S.C. Hayes (Eds.), Derived relational responding applications for learners with autism and other developmental disabilities: A progressive guide to change (7-24). Oakland, CA: New Harbinger Publications, Inc.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

Science, Pseudoscience and Antiscience Theories In Autism

Finding effective treatments for their children with autism is one of the most difficult challenges parents face. In this month’s ASAT feature, Gina Green, PhD, BCBA-D and Lora Perry, MS, BCBA share insights about the many pseudoscience and antiscience theories and claims that are made about treatments for autism, and suggest some questions parents can ask to help them decide which treatments are most likely to help. 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!

Science, Pseudoscience and Antiscience Theories in Autism:
Gina Green, PhD, BCBA-D and Lora Perry, MS, BCBA

The Importance of Informed Treatment Decisions
“Your child has autism.” With those words, a parent’s world comes crashing down. What to do? Choosing a treatment is one of the most important decisions the parents of a person with autism will ever have to make. How do parents find truly effective treatment for their child? In an ideal world, the person who dropped the autism diagnosis on a family would provide the answer. But the unfortunate fact is that many who make this diagnosis are not well informed about the wide array of autism treatments, and the degree to which these treatments have proven effective (or not). So until the day comes when parents can count on data based professional guidance, they will need to become very discerning about the various treatments, therapies, and programs that are claimed to be effective for autism. The same applies to those who are concerned with helping families get effective services. There is a need to do a lot of homework, and to do it quickly. Why the urgency? Because the stakes are high, and every moment is precious.

Pseudoscience and antiscience theories in autism

Children and adults with autism can learn, and there are effective methods for helping them develop useful skills and lead happy, productive lives. At the same time, research has shown that many currently available interventions for autism are ineffective, even harmful, while others have simply not been tested adequately. Every moment spent on one of those therapies instead of effective intervention is a moment lost forever. Besides, common sense suggests that it is wise for parents and professionals alike to invest in interventions that can be reasonably calculated to produce lasting, meaningful benefits for people with autism—that is, interventions that have withstood scientific testing.
As parents and professionals seek information about autism treatments, they discover a long and perplexing list of “options,” many of them promoted by sincere, well-meaning, persuasive people. Everyone claims that their favorite treatment works, and parents and practitioners are often encouraged to try a little bit of everything. This can be very appealing to people who are seeking anything that might help. How does one choose wisely? To quote the late Carl Sagan, “The issue comes down to the quality of the evidence.” So the first step is to find out exactly what evidence is available to support claims about autism treatments. But all evidence is not created equal. How does one sort pure hype from solid proof, wishful thinking from rigorous testing?
Science, Pseudoscience, and Antiscience in Autism
Approaches to answering fundamental questions about how the world works can be grouped into three broad categories: science, pseudoscience, and antiscience. Science uses specific, time-honored tools to put hunches or hypotheses to logical and empirical tests. Some of those tools include operational definitions of the phenomena of interest; direct, accurate, reliable, and objective measurement; controlled experiments; reliance on objective data for drawing conclusions and making predictions; and independent verification of effects.
Science does not take assertions or observations at face value, but seeks proof. Good scientists differentiate opinions, beliefs, and speculations from demonstrated facts; they don’t make claims without supporting objective data.

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How Siblings Of Children With Autism Can Help Improve Behaviors

How Siblings Of Children With Autism Can Help Improve BehaviorsWhen 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, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

 

Elopement and Neighborhood Safety

As the end of the school year approaches and students are let out on vacation, it’s important for us to consider the risks of elopement and overall neighborhood safety for children with autism. This month, we’re sharing a special feature from ASAT written by Kate Britton, EdD, BCBA and Bridget Taylor, PsyD, BCBA from Alpine Learning Group in New Jersey. Here, Kate and Bridget offer their guidelines on preventing potentially harmful situations and ensuring the safety of your children. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Elopement and Neighborhood Safety
Bridget Taylor, PsyD, BCBA and Kate Britton, EdD, BCBA
Alpine Learning Group, NJ

Elopement and neighborhood safety

Photo credit: AWAARE

You are not alone. In fact, according to an online survey conducted by the National Autism Association in 2007, 92% of the parents indicated their child with autism was at risk of wandering away from his or her home or care provider. More recently, Kiely et. al. (2016) reported survey results of families of children with Autism Spectrum Disorders which found that 49% of those children had made an attempt to elope since the age of four. Additionally, 62% of parents of children who elope reported that this behavior prevents them from participating in activities away from home. Children with autism are especially vulnerable if they wander away from caregivers, as they may not be able to communicate that they are lost, take steps to ensure their safety such as identifying who in the community is safe vs. unsafe, asking for assistance, or stating important information such as their phone number. We hope the following guidelines can help you in preventing potentially harmful situations.

Develop a “safety / reaction plan”. Develop a family safety plan and practice that plan. In the event of your child wandering, time is most important and a quick, efficient response can make a difference. For example:

  • Which family member will call the local police?
  • Which family member(s) will go out looking and where (e.g., the route to the child’s favorite park)?
  • Which family member will call neighbors of homes with pools?
  • Which family member will stay by the phone in case the child is found and returned home or to receive updates?

You can find a sample plan at the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration website (www.awaare.com). It would also be important for your child’s school or treatment center to implement an emergency plan for elopement.

Secure your home and yard. Secure your home and yard area so that your child is less likely to wander away. Sometimes standard locks are not enough as many children quickly learn how to operate standard locks on doors, windows and gates. Install locks on doors and gates in the yard that your child cannot open (consider location height and lock complexity). In addition, if your home has an alarm system, keep it set to go off whenever a door or window has been opened. If your home does not have an alarm, install an alarm system that signals when a door or window is opened. There are a variety of systems available, including high-tech and low-tech options. You may consider contacting a medical or educational provider, who can help identify resources to help obtain funding for such systems/equipment. Here are some suggested websites:

Install monitoring systems. Additionally, be sure to regularly monitor your child around the house by using a video monitoring system or a baby monitor that has video monitoring capability, such as:

Make the yard and pool area safe! If you have a pool or there is a pool nearby, ensure there is a locked fence surrounding the pool. You can also purchase a pool alarm for yours and/or your neighbors’ pools (e.g., www.poolguard.com). If your child goes into pools unsupervised, you can also use the Safety Turtle (www.safetyturtle.com), which is a wristband that locks securely around your child’s wrist and sounds an alarm if it becomes immersed in water.

Inform law enforcement. It is also critical to inform your police and fire departments that an individual with autism resides in your home. You can do this by calling your local non-emergency telephone number and asking personnel to note in the 911 database that someone with autism lives at your address. If there is ever an emergency, the emergency responders will know in advance that they need to respond accordingly. We also recommend giving local police and fire departments a picture of your child with your contact information on the back which can be helpful in identifying your child if s/he is ever brought to the station by someone else. Another suggestion would be to register with the National Child Identification Program (www.childidprogram.com). The program provides a kit that includes information on everything law enforcement would need in case of an emergency.

Educate neighbors. Another tip is to make sure your trusted neighbors are aware of your situation. Give them a picture along with some helpful information about your child (e.g., s/he is unable to speak, s/he responds to simple commands, s/he likes to swim so please keep your pool gate locked) and about autism in general. Also include your cell phone and home phone numbers, and ask them to call immediately in the event they ever see your child wandering away from the house or walking the street unaccompanied by an adult. Also, assess your child’s current level of communication. For example, can s/he answer social questions and be understood by novel listeners? Strangers will be most likely to ask your child, “What’s your name?” So it is important that your child can be understood by listeners who don’t know your child. If your child will not be understood or can’t relay enough information, you could use medical identification jewelry, such as a bracelet (e.g., www.medicalert.org).

Safety on vacations. Once your home is secure, vacations may still seem unrealistic. However, there are some steps you can take to allow your family to safely stay in a hotel or space other than the safe haven you have created. When planning for a vacation, really think about your vacation destination and determine the potential risks for your child with autism. Specifically, if your child has a history of wandering (especially towards pools or other swimming areas) you may want to ask for a room furthest from the pool area or without an ocean view-or maybe even choose a location that does not have a pool. When checking into the location, inform the hotel staff about your child and advise them that s/he will require supervision at all times and if they see him/her unsupervised to call you immediately. Also, consider using portable door alarms for hotel rooms, a child-locator systems and/or a global positioning systems (GPS). You can find low-tech tracking devices and high-tech devices online.

Teach skills to increase safety. Lastly, it’s essential to proactively teach your child skills that will increase his/her safety. Work with your child’s school or treatment program to include the important safety goals in your child’s individualized education plan (IEP) such as:

  • responding to “stop”
  • answering questions to provide information
  • responding to name
  • holding hands
  • requesting permission to leave the house
  • requesting preferred items/activities
  • waiting appropriately
  • using a cell phone
  • crossing the street safely (if appropriate given age and level of functioning)
  • seeking assistance when lost
  • cooperating with wearing identification jewelry
  • identifying outdoor boundaries (i.e., not leaving the front lawn)
  • learning clear rules about outdoor play (getting a parent if a stranger approaches, asking for help if ball goes into street)
  • swimming more proficiently
  • learning rules about pool use

Check out www.awaare.org for sample letters to submit to your case manager and attach to your child’s IEP. Finally, it cannot be overstated that children with autism require very close supervision when in harm’s way. We hope you find these proactive and teaching suggestions helpful in minimizing your child’s risk.

Additional toolkits and resources

References

Anderson, C., Law, J.K., Daniels, A., Rice, C., Mandell, D. Hagopian, L. & Law, P. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 870-877.

Kiely, B., Migdal, T. R., Vettam, S., Adesman, A. (2016). Prevalence and correlates of elopement in a nationally representative sample of children with developmental disabilities in the United States. PLoS ONE 11(2): e0148337, doi:101371/journal. Pone.0148337

About the Authors

Dr. Bridget A. Taylor, PsyD, BCBA is Co-founder and Executive Director of Alpine Learning Group and is Senior Clinical Advisor for Rethink. Dr. Taylor has specialized in the education and treatment of children with autism for the past twenty-five years. She holds a Doctorate of Psychology from Rutgers University, and received her Master’s degree in Early Childhood Special Education from Columbia University. She is a Board Certified Behavior Analyst and a Licensed Psychologist. She is an Associate Editor for the Journal of Applied Behavior Analysis and serves on the editorial board of Behavioral Interventions. She is a member of the Behavior Analyst Certification Board and serves on the Autism Advisory Group for the Cambridge Center for Behavioral Studies. Dr. Taylor also serves on the Scientific and Community Advisory Board for SPARK a new program at the Simon’s Foundation Autism Research Initiative. Dr. Taylor is active in the autism research community and has published numerous articles and book chapters on effective interventions for autism. She is a national and international presenter and serves in an advisory capacity for autism education and treatment programs both locally and abroad. She has been influential in the development of autism treatment centers both locally and in Italy, India, Canada, France, Australia and Kosovo. Dr. Taylor’s current research interests are in identifying innovative procedures to increase the observational learning repertoires of children with autism.

Kate E. Cerino Britton, EdD, BCBA is a Board Certified Behavior Analyst and a certified teacher of the handicapped, and has worked with individuals with autism since 1997. She is currently the Principal of the education program at Alpine Learning Group. She holds a Masters in Education Administration from Caldwell College and Special Education from Long Island University and a doctoral degree in Educational Leadership, Management, and Policy from Seton Hall University. She serves on the New Jersey Association for Behavior Analysis Board of Directors as the Secretary and Continuing Education Chair and has presented at national and international conferences on increasing socializing, problem solving, small groups and dyad instruction, promoting safety, and augmentative communication.

Tip of the Week: Using Token Economies In Autism Classrooms

Token economies are used in many different environments. They’re typically simple to implement and achieve desired results for behavior change, especially in autism classrooms. Furthermore, there are tons of research on how to best use them. If you want to get the best results while simultaneously promoting independence in your learners, it is not as simple as just putting some stars on a chart.

Using token economies in autism classrooms

  • Use a preference assessment. This will help you identify reinforcers your learner may want to earn. As I’ve mentioned in previous posts, I often use the Reinforcer Assessment for Individuals with Severe Disability (Fisher, Piazza, Bowman, & Amari, 1996). You can view it here.
  • Define the target behavior. What behaviors do you want to increase? And how can you define them so they are clearly observable and measurable. For instance, your learner could earn tokens for raising his or her hand in class or responding to a question within 3 to 5 seconds. It is important the behavior is clear and everyone using the token economy agrees on what each behavior looks like.
  • Choose your tokens. When I was a classroom teacher, I had a class-wide token economy in which my students earned paperclips. The paperclips had no value initially, but once the students understood the system, I could put paperclips in the bags of the students who were sitting quietly while still continuing to teach my lesson. It allowed them to reinforce the appropriate behaviors and make the most of instructional time. For other students, I’ve used things such as Blue’s Clues stickers, smiley faces I drew on a piece of paper, and even tally marks on an index card.
  • Choose when and how tokens will be exchanged. With the paperclip system in my classroom, exchanges occurred at the end of the day. After everyone had their bags packed and were sitting at their desk, we did the “paperclip count” and students could decide whether to spend or save. There was a menu of options ranging in price from 10–100 paperclips. It was also a great way to reinforce some basic math skills (such as counting by fives and tens and completing basic operations). For other students, they might be able to exchange tokens after earning a set amount. Depending on their level of ability, that set amount may be very small (such as 2 to 3) or much larger (such as 25). Sometimes, students have a choice of items or activities, while at other times they earn a pre-selected item or activity.
  • Keep it individualized. Conducting a preference assessment helps to make sure it’s individualized to your learner’s preferred items. With my students, the menu of items/activities they could earn was generated through a conversation with them.
  • Decide if you will implement a response cost. For my students, I have never used a system in which they could lose tokens they had already earned. But you may find that utilizing it may help. It all depends on your particular learner, which makes the next point all the more important.
  • Take data. You need to take data so you will know if your token economy is helping you achieve your goal with the target behaviors you have set.
  • Thin the reinforcement over time or change the target behaviors. I do not want any of my learners to be using a token economy for one behavior for all eternity! Let’s say I start with a young learner who is not sitting down for instruction. I may start the token economy by having my student earn a token for every instance in which they are seated correctly for a specified period of time. As my student masters that, I will increase the amount of time required before a token will be earned. Once they’ve achieved the goal I set, I can either fade out the token economy, or keep the token economy but use it for a new behavior.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.