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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:
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.
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.
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.
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).
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.
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.
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The decisions of many consumers are influenced by what they read in the newspaper or on the Internet and hear about on television or radio. It is our belief that access to effective treatment for the autism community is enhanced by accurate representations of autism treatment by these media outlets. Unfortunately, many media representations are fraught with inaccuracies. Here’s what you need to know about spotting the difference between fake and real news.
Effective treatments typically receive less press attention because their providers are often focusing on maximizing outcomes in an accountable manner rather than on soliciting media attention. They are also limited by ethics codes on how they can promote their treatment and services.
Many of you may be familiar with the Latin phrase, “Caveat Emptor,” which means “the buyer alone is responsible for checking the quality and suitability of goods before a purchase is made.” With scores of “miracle cures” and “breakthroughs” for autism receiving widespread media attention well before they have been shown to be beneficial through credible, peer-reviewed research, “Caveat Lector: Let the Reader Beware” seems to be a very suitable guiding principle across all media platforms (e.g., print, radio, television, Internet) particularly at a time when “fake news” is becoming commonplace. In other words, the reader is put in the position of being him/herself responsible for evaluating the quality and suitability of information being presented to him or her.
As a consumer, you bear a responsibility to scrutinize sensational claims related to various autism treatments and to be knowledgeable enough to consider such stories through a skeptical lens. We wish you did not need to work so hard to differentiate good information from bad, but that is the sad reality of autism treatment today, with 500+ treatments being touted. Unfortunately, many writers and journalists are not well versed in research methods, unless they specifically write about science, which is a very small portion of all individuals writing about autism out there. With all this in mind, when reading or hearing about an autism story in the media, please consider the following questions:
About the Intervention
About the Experts
About the Underlying Scientific Support
Some Final Questions to Consider
Sadly, inaccurate and biased portrayals of autism treatments in the media are abundant. In our experiences, inaccurate portrayals often fall within the following themes:
Being mindful of these themes will enable you to truly embody the principle of “Caveat Lector.” Please consider liking our Facebook page as we routinely showcase our Media Watch efforts. ASAT’s Media Watch responds to both accurate and inaccurate media portrayals of autism treatment in an effort to increase access to effective treatment for the autism community.
Celiberti, D., & Wozniak, R. (2016). Caveat Lector: Let the reader beware. Science in Autism Treatment, 13(1), 8-9.
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.
Renee Wozniak, PhD, BCBA-D, joined the ASAT Board of Directors in 2016. Prior to serving as a Board Member, Renée was a part of ASAT’s Externship, where she assumed the roles of Media Watch Co-Coordinator and Media Watch Lead. Renée received her Ph.D. in Special Education, focusing on Autism Spectrum Disorders (ASD) and Applied Behavior Analysis (ABA), from Arizona State University. She has worked in the fields of ASD and ABA in a variety of capacities since 1998, serving in public schools as a special education teacher, behavior intervention teacher specialist and district-wide autism trainer, and in clinical and home-based ABA programs as a research assistant, clinical/behavior interventionist, and program supervisor. Renée has trained families, therapists, teachers, teacher candidates, paraprofessionals, administrators, and others working with individuals with autism, and has instructed master’s level ABA, ASD, research and special education courses. She continues to stay involved in the field as a home-based ABA program supervisor, and as an instructor in ABA and ASD master’s degree programs. Renée is passionate about helping individuals with autism and their families by supporting and disseminating scientific research in autism treatment.
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In the autism community, one of the most fiercely debated topics is how to refer to people on the spectrum. Here’s the difference between saying a child with autism vs. autistic child. While some prefer the term ‘people with autism’, others lean towards ‘autistic person’. Then there are those who remain indifferent, and prefer to take a tomato [tomayto]; tomato [tomahto] view of things. More than simply conveying meaning, words convey sentiment and ultimately shape how people are perceived.
As a parent and someone whose life has been impacted by autism, you’re likely to have your own thoughts on the topic. The way you refer to your child, as either a child with autism or an autistic child, says something about how you see your child’s condition.
Unpacking the term a ‘child with autism’
Autism is not something which defines our special children. This is the same thinking that would be applied when describing someone with any other illness or disability. A good example is when referring to a cancer sufferer, you’d say ‘someone with cancer’. This acknowledges that the person is more than their illness, and places emphasis on the fact that first and foremost they’re a person.
The well known autism blogger Autism Daddy had this to say on why he tends to use the terminology ‘child with autism’: “Anyway, the same way you say “she has cancer” I say “Kyle has autism”. It doesn’t define him as a person, it’s just something that he has and he has to live with and fight…the same way you fight cancer.”
Another important idea which this term conveys is that autism is merely one trait which makes up who a child is. It highlights the fact that there are many other facets and intricacies which make up a special child’s personality. Another parent blogger explains the significance of not focusing solely on your child’s autism: “I have a son with autism, twinkling green eyes, long brown hair, the cutest smile, an infectious laugh, and an apparent lifelong obsession for the freakin Wiggles. Not an autistic son.”
Unpacking the term an ‘autistic child’
The term ‘autistic child’ conveys the idea that autism is an integral and defining part of who a child is. This isn’t necessarily a negative way of describing someone, it’s simply a different way of perceiving the condition. The important distinction is that a term like ‘autistic’ implies that the child would be completely different if not for autism. In other words, autism makes a child who they are. Some also argue that this term is perhaps more reflective of reality as unlike an illness, autism will always be part of who this child is. And in that way, autism does make special children who they are.
Alex Lowery wrote a compelling piece in which he explains why he identifies more closely with the term autistic: “Personally, I don’t see anything offensive about the term “autistic.” I use it quite frequently to describe others and myself on the spectrum… Why is it considered offensive to say someone is autistic? And why is it better to say that they “have” autism? To me, that kind of implies that autism is an illness that needs to be cured — which it isn’t.”
Like Lowery, some people on the spectrum find the term ‘people with autism’ offensive because they perceive autism as a part of who they are. Unlike an illness, autism isn’t something someone simply ‘has’ and can recover from. Autism is a lifelong battle; an indelible part of one’s identity and the way one sees the world. And for those who perceive autism in this way, ‘autistic’ conveys these ideas clearly.
What does the research say?
In 2015, a variety of people were surveyed – including those with the condition, family members and professionals – to get a better sense of the autism community’s preferences. The survey clearly shows that there has been a shift towards language which in some way identifies autism as an integral part of a person’s identity.
All those surveyed identified with terms like ‘on the autism spectrum’ and ‘Asperger syndrome’. However, a significant distinction can be found when it comes to terms like ‘autistic’ and ‘Aspie’. According to the survey, those with the condition prefer identity-first terminology like ‘autistic’ while family members didn’t. The survey also found that terms like ‘low functioning’ and ‘classic autism’ are strongly disliked by most people surveyed.
What can we learn from all this?
It’s important to be aware of the language used to describe autism, and to take into account the preferences of those with the condition. But perhaps the biggest takeaway is that just as perceptions about autism are continually evolving and changing so too is language. We all need to be aware of this, and to accept that there isn’t such as thing as a correct way to describe autism. It’s largely a matter of personal preference.
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As parents, we want our kids to want to have good behavior. They should want to behave because it’s the right thing to do, right? Yeah right. This is why all parents should use token economies.
Have you met a 3 year old with an innate desire to good for this world? It’s in there somewhere but at age 3, it’s more like threenager-ville. Little humans do what gets them what they want. They behavior in a certain way to achieve a certain outcome.
A threenager is likely to tantrum to get access to their favorite toy, TV show, candy, a left shoe they can see on the other side of the room — you name it. They are acting a certain way (tantrum) to achieve a certain outcome (getting whatever they want).
What can we do about this? Is there any way to teach them to behave?! Well, we can make sure they get what they want not by having a tantrum, but by engaging in desired behaviors.
We can use positive reinforcement in a more structured and specific way than just handing out praise and rewards willy-nilly.
The definition of a token economy is: a behavior change system consisting of three major components: (a) a specified list of target behaviors; (b) tokens or points that participants receive for emitting the target behaviors; and (c) a menu of backup reinforcer items.
Token economies can possibly take the form of sticker charts, chore charts, marble jars, etc. You need a physical token that your child can earn when they engage in the desired behavior. You do NOT need to go out and spend $50 at the nearest school supply store making a big fancy chart. You can draw 5 circles on a piece of paper. When they do the desired behavior, draw a check mark in the circle. Done. Grab that piece of junk mail off the kitchen counter and a half-eaten, I mean half-broken, crayon.
The next step is to define the behaviors. Again, you don’t need a big fancy dictionary. Just pick one to three behaviors that will earn the tokens. You need your Little to understand this so it can’t be a big grown up idea like ‘being responsible’ or ‘showing respect’. What does that mean to a Little? Be specific. You earn a token for: (1) following instructions without yelling; (2) eating 5 bites of every food Mom puts in front of you; and (3) putting on your shoes when instructed to.
Pick your battles. You may have a list of 20+ things your Little could stand to improve. I’m pretty sure I have a list of 20+ things to put myself on a token economy. Let’s prioritize and make it understandable by the kiddo.
Lastly — what can they earn with these tokens? You can give choices before earning and they can decide at the beginning or at the end. You can make a fancy menu of reinforcers — Chuck E Cheese is the perfect example of this. This many tickets = this super awesome toy.
Or, you can just say: get all the stickers, get 5 check marks, get 10 marbles and earn a fun activity. You can pick from: extra screen time, trip to the library, a new toy from the dollar spot, etc.
All of that in short form:
One last thought: Someday you will find that things are going well and the token economy goes by the wayside. Remember it when a new problem behavior crops up and you are once again at your wit’s end. Start over. Pick new behaviors, new rewards, same system.
Don’t take my word for it — this is just the tip of the iceberg in behavior analytic research supporting token economies.
If you’re not a crafty person, you can always check out our reward chart here!
Cooper, J., Heron, T., & Heward, W. (2007). Basic Concepts. In Applied Behavior Analysis(2nd ed., pp 560-567). Columbus: Pearson.
Kazdin, A. E. (Ed.). (1977). The token economy: A review and evaluation. Plenum Publishing Corporation.
Kazdin, A. E. (1982). The token economy: A decade later. Journal of Applied Behavior Analysis, 15(3), 431-445.
Skinner, B. F., Ferster, C. B., & Ferster, C. B. (1997). Schedules of reinforcement. Massachusetts: Copley Publishing Group.
Reitman, D., Murphy, M. A., Hupp, S. D., & O’Callaghan, P. M. (2004). Behavior change and perceptions of change: Evaluating the effectiveness of a token economy. Child & Family Behavior Therapy, 26(2), 17-36.
Leanne Page, M.Ed, BCBA has worked with kids with disabilities and their parents in a variety of settings for over 10 years. She has taught special education classes from kindergarden-grade 12, from self-contained to inclusion. Leanne has also managed a center providing ABA services to children in 1:1 and small group settings. She has extensive experience in school and teacher training, therapist training, parent training, and providing direct services to children and families in a center-based or in-home therapy setting. Since becoming a mom, Leanne has a new mission to share behavior analytic practices with a population she knows needs it- all moms of littles! Leanne does through her site parentingwithaba.org and through her book ‘Parenting with Science: Behavior Analysis Saves Mom’s Sanity”. You can contact her at email@example.com.