Autism and the Peer Review Process

Autism peer review process

If one wanted to market a scientifically-unproven intervention, device, or pill as a valid autism treatment to families affected by autism, how would one go about it? Glossy pictures? Glowing testimonials? Miracle claims? Hyped social media pitches? Charming infomercials? Answer: All of the above.

And, here’s another marketing strategy: portraying one’s product as having scientific validation when, in fact, such validation does not exist. To do this, one might make references to “scientific evidence” in material that, upon systematic inspection, is less than convincing.

I was reminded of this when I recently reviewed a web page that boldly claims, “SCIENTIFIC RESEARCH Verifies The Son-Rise Program® WORKS!” Findings support the efficacy of parent-delivered SRP intervention for promoting social-communicative behavior in children with autism spectrum disorders.”

What are these findings? On the website, the Son-Rise marketers provide a link to a key source of their “verification” – a paper entitled “Training Parents to Promote Communication and Social Behavior in Children with Autism: The Son-Rise Program”. This paper, written by a trio of Northwestern University researchers, presents a study of the purported benefits of intervention delivered by 35 parents of children with autism who participated in a five-day parent-training course on Son-Rise Program methods, as well as an advanced follow-up course 3-12 months later. Parents completed The Autism Treatment Evaluation Checklist (ATEC), a rating scale that contains items on communication, sociability, cognition, physical status and behavior.

The authors divided the 35 parents into three groups based on how many hours of intervention the parents reported giving their child each week during the interval between their first and second Son-Rise trainings (i.e., no intervention [11 parents], 1–19 hours [13 parents], 20 or more hours [11 parents]). The authors present results reflecting statistically significant higher ATEC scores at second ATEC completion relative to the first, and they suggest that these higher scores reflect real improvements in communication, social skills, and sensory and cognitive awareness. They go on to point out that children with greater gains were more likely to have had more hours of parent-administered SRP.

As linked on the Son Rise web-site, this study is typeset like a published research article, prompting me to try to determine which peer-reviewed journal had published it. Through email correspondence, the third author, Cynthia K. Thompson, reported that the study had not been published because the team had decided to collect additional data prior to submission for peer review. In other words, this study is a “work in progress” and certainly not a verification of treatment effectiveness. In fact, this practice of repeatedly analyzing results prior to the close of data collection is, in itself, problematic from a scientific standpoint, as the process involves conducting many analyses that often yield varying results but are never reported (see Simmons, Nelson, & Simonsohn, 2011).

One of the mechanisms that make science such a powerful engine for progress is the reliance on the peer review process. The scientific method requires that, when a scientist makes an assertion (e.g., “This treatment works!”), (s)he knows that there exists a responsibility to show other scientists how they arrived at their conclusions with enough specificity that others can replicate the study. It is through this process of peer review that faulty assertions about the data are challenged and, hopefully, rejected in short order.

Typically, in the peer review process, an editor reviews a manuscript and, if deemed appropriate, shares the manuscript with a team of reviewers with demonstrated expertise in the relevant subject area. In many cases, these reviewers are “blind” to the identity of the authors and vice-versa, so as to minimize personal biases (e.g., affiliations, personal grudges). The reviewers are charged with the task of evaluating the contents of the manuscript on the basis of scientific merit, including the methodology, statistical analyses of the data and logic of the authors’ conclusions. The reviewers then describe, in writing, their opinions regarding the strengths and weaknesses of the study and make a recommendation regarding publication. The editor synthesizes this feedback and provides a summary to the author(s). In many cases, the editor will reject the manuscript for publication altogether. In other cases, he or she may require revisions, acknowledge limitations, temper conclusions or make other substantive changes prior to publication.

In the case of the manuscript written by Thompson and her colleagues, I suspect that, if it were submitted to a journal with a legitimate peer review process, a multitude of questions would be raised about it, including:

  • participant recruitment (35 self-selected parents out of a pool of 430 parents, many of whom participated in the first training but apparently did not return for more)
  • group distribution (non-random group assignment)
  • the outcome measure (one brief checklist completed by parents)
  • treatment fidelity (no way of verifying the quality or quantity of actual treatment), and
  • control for placebo effect, expectancy bias or any number of potential threats to the validity of responses.

And, despite some effort on the part of the authors to control for this, there is no real way of knowing what other interventions the child was engaged in during the interval between their parents’ first and second Son Rise training.

Of course, scientists who make up peer review committees are vulnerable to the same kinds of human frailties as the rest of humanity (i.e., jealousy, ego, bias, profit motive); however, the communal nature of the process, as well as another scientific safeguard- replication of results by others- helps to minimize the degree to which these frailties impact decisions regarding the quality of a study and our confidence in the results. The scientific method is far from perfect, but it is probably the best game in town for vetting new interventions.

Parents and other consumers of product pitches can watch for treatment claims that look like they have been established through the scientific process but in actuality fall short. Discuss potential treatment options with licensed and/or board certified experts whom you trust. Practice skepticism, especially when fantastical claims are made. Use resources, such as ASAT’s Treatment Summaries for quick reference. Families affected by autism deserve honest, direct communication about the state of the science for treatment options. Accept nothing less.

References

Simmons, J. P., Nelson, L. D., & Simonsohn, U. (2011). False positive psychology: Undisclosed flexibility in data collection and analysis allows presenting anything as significant. Psychological Science, 22, 1359–1366.

Cite This:

Mruzek, D. W. (2012). Focus on science: “Verification” and the peer review process. Science in Autism Treatment, 9(3), 18-19.

About The Author

Daniel W. Mruzek, Ph.D., BCBA-D is an Associate Professor at the University of Rochester Medical Center (URMC), Division of Neurodevelopmental and Behavioral Pediatrics in western New York. He received his doctoral training in Psychology at the Ohio State University and is a former Program Director at the Groden Center in Providence, Rhode Island. Currently, he is an associate professor and serves as a clinician and consultant, training school teams and supporting families of children with autism and other developmental disabilities.

Mruzek coordinates his division’s psychology postdoctoral fellowship program in developmental disabilities and is an adjunct faculty member in the University of Rochester Warner School of Education. He is actively involved as a researcher on several externally funded autism intervention research studies and has authored and co-authored more than 20 peer-reviewed articles and book chapters on autism and other developmental disabilities. Dr. Mruzek is on the editorial board for the journals Focus on Autism and Other Developmental Disabilities, Behavior Analysis in Practice, Journal of Mental Health Research in Developmental Disabilities, and Intellectual and Developmental Disabilities. Dr. Mruzek is a former member of the Board of Directors of the Association for Science in Autism Treatment.

To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Who’s Most Qualified To Work With Your Child.txt

Parents of children with autism are faced with a wide range of choices when it comes to the education and support of their children. The most important question of all is who’s most qualified to work with your child? Although a great deal of research supports Applied Behavior Analysis (ABA) as the only effective treatment for autism, there are still many other interventions that are touted as potentially helpful. Research shows that combining ABA with other interventions is less effective than implementing it alone, with high fidelity and intensity (Howard, 2005).

Who's Most Qualified To Work With Your Child? Not all behavioral professionals are created equal. There is little control over the use of terms like “behavior specialist,” “behavior therapist,” and “behaviorist.” Just about anyone can claim to be one of these, often on the basis of very limited training and virtually no on-going supervision.  Consumers are often not aware that these are uncontrolled titles, and may put their trust in untrained, unsupervised practitioners. 

The problem of lack of quality control in behavior analysis was addressed by the development of state certifications for behavior analysts, and eventually the Behavior Analyst Certification Board (BACB) was formed. 

BACB credentials allow consumers some degree of confidence in the education, training, and supervision of the professionals they entrust their children to.  If someone claims to have one of these credentials, consumers should be able to find them on the BACB registries, easily accessed online at www.bacb.com

What does the BACB mean for consumers?  Those seeking behavioral interventions for themselves or others can look for professionals who have met the standards of the Behavior Analyst Certification Board with the confidence that that they have a minimum level of education, experience, and supervision and that they are obligated to follow an ethical and professional code.  Whether looking for a school program, privately hiring a professional, or seeking insurance coverage of services, the BACB designations can help consumers to determine if professionals and staff members providing services are well-qualified. They are also not at all easy to accomplish, so it is safe to say that someone with one of these credentials has achieved a high level of understanding of the science of behavior and the practice of behavior analysis.

Some states now license and certify behavioral professionals, and the standards for state licensure and/or certification may be more or less than those required by the BACB.  Having a BACB credential in addition to state licensure ensures that the professional also meets the BACB’s high standards. 

Credential Minimum education requirement Type of work Supervision
Registered Behavior Technician (RBT) High school diploma or equivalent Direct implementation of behavioral interventions (paraprofessionals) Ongoing by a BCaBA, BCBA, or BCBA-D
BCaBA Bachelor’s degree Practice under supervision, supervise RBTs Ongoing by a BCBA or BCBA-D
BCBA Master’s degree Independent practice, supervision of BCaBAs and RBTs None
BCBA-D Doctoral degree Independent practice, supervision of BCaBAs and RBTs None

 

Guest post written by Dana Reinecke, PhD, BCBA-D.

 

References

www.bacb.com, retrieved January 28, 2017

Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H.  (2005).  A comparison of intensive behavior analytic and eclectic treatments for young children with autism.  Research in Developmental Disabilities, 26, 359-383.

National Autism Center.  (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: Author.

Overcoming 3 Barriers To Earning Your BCBA

Working toward a BCBA or BCaBA is hard work – attending classes, getting experience hours and, working, often full time, and for many, doing all this while raising a family. The good news is that all of this hard work will someday pay off. After all, the ultimate goal of this is to be qualified to provide help to individuals who desperately need it. Working in the field as a BCBA is a noble cause and many families will be grateful for your support.

But along this path there are many details to manage, details which can easily slow, or derail your path, if not properly managed. You know the details I’m referring to – direct supervision hours, indirect supervision hours, correct ratios of experience to supervision, weekly forms to be signed, tracking hours for each of these and sorting through the multiple supervisors who have provided fractions of the needed hours to you this month. This can get confusing and quickly create barriers – but it doesn’t have to.

Overcoming 3 Barriers To Earning Your BCBA

Learn more about overcoming 3 big barriers to earning your BCBA, and read along for our tips on how to maneuver past them.

Barrier #1 – Lack of a plan.

It is easy to get carried away with the busyness of your life and forget to take some time to create a plan for meeting your requirements. 2 years often gets tossed around as the time it takes to earn your BCBA. This is a fine time frame to aim for, but without a concrete 2-year plan, it is easy for life to get in the way, and fall short on that goal.

Taking an hour to plan your course of action now can save you months later. Identify some concrete, measurable goals and create a plan. The BACB website has the information you need to get started. Find the requirements – course sequence, experience hours, supervision hours, etc., and create your goals based on those. For example, if you are doing supervised independent fieldwork to reach your experience hours, you will need to accumulate 1,500 total hours to qualify for the exam. This can now be your basis for your experience plan.

Once you have figured out how many experience hours you need, grab that 2 year time frame and calculate how many hours per week you need to acquire in order to reach your goal in time. If we use our 1,500 number, and you are able to work 50 weeks a year, that comes out to 15 hours per week. This weekly goal of 15 experience hours is much more manageable and accomplishable than a goal of 1,500 in 2 years. With this weekly goal too you can begin to plan how you will get your 15 hours per week.

Barrier #2 – No control over experience and supervision.

This is a barrier that is a little bit harder to overcome, depending on how you are acquiring your hours. If you have set your weekly goal at 15 hours of experience per week, but you don’t currently receive 15 hours of work per week, then something needs to change. Either lower your hours to a number you do currently receive on the regular, and adjust your timeframe accordingly, or talk to your practicum site to see if you can arrange for more hours.

Be cautious about tightly planning around the number of hours you are promised to work each week, especially if you don’t already work this much. It is more difficult to provide those hours than some practicum sites would like to admit. One strategy is to request 10% to 20% more hours than you need, to account for cancellations. After you agree on a weekly goal of experience hours with your practicum site, add that number along with the corresponding supervision hours required into your supervision contract. While you have responsibilities as a supervisee, your supervisor also has responsibilities to provide you with the training you need. Both of these contingencies should be in writing in your signed contract.

Barrier #3 – Disorganization.

Now that you have overcome the first 2 barriers to earning your BCBA it is time to actually accumulate those hours. This is where the responsibility truly falls on your shoulders. Make sure you stay organized from the start.

A great way to keep yourself organized is to write down your your goals for experience and supervision and track your progress each week. You can track this information in any form that is easy for you. Some people use Excel, others use Google Calendar, but I like to use my Self Management Planner for things like this, because it incorporates an appointment book with a place to write weekly goals and track progress toward that goal every day of the week. Whatever you use, make sure your tracking system is easy to use and portable. Write down your progress every day, and include the number of experience hours and the number of supervision hours you logged.

Write down your supervisor name next to your hours too. This way you won’t forget who provided supervision and when. The experience forms you need to fill out from the BACB have a section to write in your experience hours for the supervision period along with the supervision you acquired during that period. But if you wait to write down your supervision when you are filling out these forms every week or two, it will be very difficult to remember all the hours you got. This is especially hard when your experience is broken up over 5 different clients at 6 different locations and 2 different supervisors. Logging this daily in your planner, or whatever system you use will help immensely. Staying up to date with this will pay off 2 years from now when you are filling out your forms to take your exam.

Earning your BCBA is hard enough, with the challenging courses, rigorous exam, and complex nature of learning about behavior analysis. But planning for and tracking experience hours does not have to add to these difficulties. By removing these three barriers, you will remove a big stressor, and get yourself one step closer to successfully earning your BCBA in the time you want.

Daniel Sundberg is the founder of Self Management Solutions, an organization that operates on the idea of helping people better manage their time. Towards this end, he created the Self Management Planner, which is based on an earlier edition created by Mark Sundberg in the 1970s. Daniel received his PhD from Western Michigan University and currently consults with organizations on performance improvement.

Lisa Sickman supports Self Management Solutions with ongoing content and product development. She received her Masters degree in behavior analysis from Western Michigan University, and then worked for several years as a BCBA at an autism center. Lisa currently teaches future BCBAs and BCaBAs as a co-instructor for ABA Technologies.

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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Productive Meetings in Home ABA Programs

Creating effective meetings with your child’s BCBA and other service providers can be difficult. In this month’s ASAT feature, Preeti Chojar, Board Member of the Association for Science in Autism Treatment (ASAT), shares some valuable tips about how parents can make the most out of these meetings. 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 parent who has a home-based ABA program.  We have monthly meetings with all of the providers that work with my child.  I am looking for some ideas on how to make the most of these meetings.  Any suggestions?

Answered by Preeti Chojar, Mother and ASAT Board Member

It is terrific that your team meets monthly! Collaboration and consistency amongst members of the professional team is the hallmark of a successful home program. I have found that a great way to build teamwork is to have regular meetings to keep the whole team on the same page. Here are some suggestions to help you use this time effectively and efficiently. In our particular case, we meet monthly, but keep in mind that some teams may need to meet more frequently (depending on the composition of the team, level of oversight required, and needs of the child).

Meeting composition
Ideally, a time should be scheduled when the entire team can be present. A supervisor like a behavior consultant (e.g., BCBA) or a family trainer should be present as well. It could also include any related service providers, such as the speech pathologist, occupational therapist, or physical therapist. Assembling the entire team can be difficult but try your best, as the benefits will make it worthwhile.

Productive Meetings in Home ABA ProgramsDevelop the agenda
Always create an agenda well before a team meeting. Please note that this agenda should not side-step any other communication that should be occurring (e.g., the consultant may want to know right away if a new skill-acquisition program is not going well).

  • Start by writing down any new behaviors, both positive and negative. Also note if there is evidence of lost skills or discrepancies in skill levels across settings, situations or people.
  • Any data taken by instructors should be summarized and analyzed before the meeting.
  • Add anything that the supervisor or the collective wisdom of the group could help resolve.
  • One of the agenda items should always be to review last month’s meeting notes paying close attention to any open or unfinished items.
  • If the child is also receiving services in a school or center-based environment, it is beneficial to seek input from those providers as well. Any observations made by people in the community that highlight some skill or skill deficit which had gone unnoticed can be brought to the table too.
  • Finally, make sure the agenda is well balanced and addresses everyone’s concerns. Prioritize agenda items and if necessary suggest some time limits.

Circulate the agenda

  • Make sure to circulate the agenda to everyone attending the meeting, ideally a few days before the meeting.
  • Ask all team members to notify you ahead of time of any other agenda items they might have that were not added yet.

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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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Tip of the Week: Your Child’s Autism Diagnosis Long Term

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

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

WRITTEN BY SAM BLANCO, 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.

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.