We’re so thrilled to be kicking off Autism Awareness Month with a special guest article from the Executive Director of the Association for Science in Autism Treatment (ASAT) David Celiberti, PhD, BCBA-D, who shares with us 10 things autism awareness should be about. David has also provided a wealth of information and resources for parents and professionals to utilize in finding the best treatments out there, seeking out reliable research and asking good questions, helping individuals with ASD find a place in the workforce, and much more. 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!
10 Things Autism Awareness SHOULD Be About
by David Celiberti, PhD, BCBA-D
April is Autism Awareness Month. The blue puzzle pieces will appear on thousands of Facebook pages and billboards, and the media will give greater attention to, and information about autism. Further awareness is a wonderful thing, as detection and diagnosis are necessary first steps to accessing help in the form of treatment, information, and support. With well over 400 treatments from which to choose, parents of children with autism need guidance, tools, and accurate information to make the best possible choices for their children: choices that will undoubtedly have a profound impact on both their current quality of life and their children’s future.
Clearly, autism spectrum disorder (ASD) is no longer the rare diagnosis that it once was. With the incidence of one in 68 children, and one in 42 boys, our own families, neighbors, and co-workers are all touched by autism. In fact, the sheer numbers have heightened awareness of autism in and of themselves. This awareness is essential: it promotes early detection, and with early detection, we hope for a relatively clearer course toward effective treatment and better outcomes. Sadly, however, the early detection of autism alone does not always mean a seamless path to intervention. Furthermore, families whose children are diagnosed with autism are still not able to expeditiously access the most effective science-based treatments available. Instead, families often have to sort through over 400 pseudo-scientific treatments until they arrive at the most effective and research-proven intervention in addressing the complex disorder of autism. We must do better!
“Autism Awareness” should be about more than just detection and diagnosis. It has always been ASAT’s hope that the conversation around autism awareness would be broadened to focus upon the obstacles that separate individuals with autism from effective, science-based intervention and distract their families, caregivers, and teachers from accurate information about effective autism intervention. Below are 10 ideas about what Autism Awareness should be about, along with ways that the Association for Science in Autism Treatment (ASAT) can assist families and providers in navigating the complex maze of autism treatment options.
Autism treatment is a multi-million dollar industry. For the majority of the 400+ available interventions, science is overlooked in favor of pseudoscience, and they are marketed with heart-wrenching testimonials, anecdotes and video montages, and often bolstered with poorly crafted and misleading surveys. Many boast inaccurate and even outrageous claims that are touted as evidence of effectiveness. Aggressive marketing of these so-called “therapies” and “cures” is absolutely overwhelming and it drowns out accurate information for parents who are desperate to help their children.
For most other medical conditions, a provider who disregards a proven intervention in favor of using a “fringe” treatment could be sued for malpractice! Such safeguards do not widely exist for autism treatment. We do no favors for children with autism, their families, and those charged with providing effective services when we not only ignore quackery, but allow it to proliferate by failing to counter baseless claims. Families deserve better. Individuals with autism deserve better. Visit our website to learn more about the scientific support behind various autism treatments, the relevance of peer-reviewed research, the pitfalls of testimonials, as well as many other articles related to becoming a more savvy consumer. Please also see our review of Sabrina Freeman’s book, A Complete Guide to Autism Treatments.
As adults, voters, consumers, providers, and parents, choice underlies all of our decisions. Decision-making power comes with tremendous responsibility. There is a myriad of stakeholders whose decisions have profound implications for children and adults with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, and taxpayers.
- Scientists need to take responsibility in making their findings about an intervention’s effectiveness clear, unambiguous, and unexaggerated. Efforts should be taken to promote replication.
- Administrators and program leaders need to take responsibility in identifying internal and external training opportunities that further their staff’s competence with evidence-based practice. Additionally, they should make sure their staff receives the support needed to sustain these efforts and to continually engage in data-based decision making when both selecting and monitoring interventions. They must be savvy and selective in their selections of trainings for their staff and not fall prey to gimmicks, splashy sales pitches or fads.
- Providers need to select procedures that are based on published research, adhere to their discipline’s ethical guidelines about evidence-based practices, and maintain a commitment to ensuring that parents have truly been given the opportunity to provide informed consent. For example, if there is no scientific evidence to support an intervention that one is using, then it is an ethical obligation of the professional to inform parents of this lack of evidence. Please see Principle #1 and #2 of the Ethical Code for Occupational Therapists, Section 2.04 of the Ethical Principles of Psychologists and Code of Conduct, and Section 2 of the Guidelines for Responsible Conduct for Behavior Analysts.
- Parents must continue to exercise caution in sorting through autism treatment options to make the best possible choice for their children, particularly since many providers do not make the path to effective treatment clear and simple.
There are far too many individuals with autism who do not have access to 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. Every dollar spent on an intervention that does not work depletes resources available for interventions that do work. For questions to ask to make sure that the individual with autism in your life is receiving science-based treatment, please see our article on questions to ask marketers and read more about the following three phases of inquiry about particular interventions and their associated questions and considerations in The Road Less Traveled: Charting a Clear Course for Autism Treatment:
- Phase I: Exploring the viability and appropriateness of a particular treatment approach.
- Phase II: Assessing the appropriateness of an intervention under the supervision of a specific service provider for a specific individual with autism.
- Phase III: Monitoring the implementation of the treatment and evaluating effectiveness.
As we know, not all information on the Internet is reliable and accurate. You have probably heard the term, caveat emptor (“Let the buyer beware”). Consumers must also practice caveat lector (“Let the reader beware”).
Often Internet information is deemed equivalent in relevance, importance, and validity to research published in peer-reviewed scientific journals, but it is not. Testimonials and uncontrolled studies from so-called researchers can lead parents astray and be a tremendous source of distraction. Parents of newly-diagnosed children may be particularly vulnerable. Know the red flags to avoid and learn how to evaluate research by visiting our website. Our library of articles highlights scientific concepts and methods as they relate to potential autism interventions, with the goal of providing families, educators and clinicians with the information they need in order to be savvy consumers of marketed treatment products and therapies.
There are scores of “miracle cures” and “breakthroughs” for autism which receive widespread media attention (e.g., print and online news outlets, radio and television programs), even if they have not been shown to be beneficial through peer-reviewed, published research. Unfortunately, effective treatments typically receive less press because their providers are often focusing more on outcomes than on garnering media attention. Things are not likely to improve in terms of access to effective treatment for the autism community without more accurate representations of autism treatment in the media.
The media have a responsibility to scrutinize sensational claims related to a proposed treatment, and to be knowledgeable enough to report on those treatments with objectivity. Such scrutiny can be accomplished by asking important questions such as:
- Are there any published research articles in peer-reviewed journals documenting the efficacy of the intervention method? If not, why not? If so, are the studies well designed? Have they been replicated by others?
- Who am I interviewing for this story and what are his/her qualifications? Is he/she making claims of efficacy/effectiveness that are not supported by scientific data? What does he or she stand to gain by this interview? Who may benefit financially from my article?
- How much does the intervention cost? Are these costs reasonable? How is it paid? Is there any evidence of harm imposed by this intervention? What are the risks?
- What kinds of training and supervision do treatment agents need to have before implementing the intervention? If none or very little, have I explored the ethics surrounding this and if there is adequate protection for consumers, particularly for those with autism?
- What position statements have respected professional organizations generated which support, or do not support, this intervention method? Are there science-based interventions (such as applied behavior analysis) that are recommended by these organizations?
- Have I consulted with an unbiased entity for their input?
- Have I taken necessary steps to avoid putting caregivers and treatment recipients at risk?
To support accuracy in the media, ASAT has developed resources for journalists. For examples of accurate and inaccurate reporting, please visit our Media page, learn more about our Media Watch campaign, and peruse our bank of archived letters.
For many conditions, such as Lyme disease and breast cancer, awareness is essential because awareness promotes detection, and with detection comes a well-established set of treatment options. Furthermore, optimal prognoses are often associated with early detection. Within a few short weeks of proper diagnosis, individuals have the opportunity to receive the best treatment that science has to offer. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen.
With autism, the story is too often different. Unfortunately, at the time of diagnosis, many children with autism are not accessing the best that science has to offer, and their families are bombarded with solicitations to partake in any number of the 400+ autism treatments, most of which lack even an iota of scientific support.
While individuals with autism learn and progress across their life span, it is widely understood that the earlier intervention begins, the greater the potential for an optimal outcome. Please learn more about the research basis for early intervention here. It is also important to remember the limited window of time there is to prepare children for the “least restrictive setting” once they enter the public school system. Investment in effective early intervention saves a tremendous amount of resources over an individual’s lifespan. These cost savings should become an integral part of conversation about intensive early intervention. Children’s futures hang in the balance, which is clearly a function of their early intervention experiences. Please see the following articles on the ASAT’s website:
- Early detection and intervention
- Teaching an 18 month old
- Parent participation in home-based intervention
- Expanding interests
- Explaining decisions to use science-based treatment
With the right treatment, all individuals with autism demonstrate improvement, and many go on to lead happy, productive and fulfilling lives. Much of the conversation about treatment, however, focuses on “best outcome” and this is often defined as entering “mainstreamed” education settings or losing the diagnosis of autism altogether. This may delegitimize the significant progress made by most individuals with autism, whose outcome may be different, but no less important and meaningful. We know, for example, with intensive intervention based on applied behavior analysis (ABA), individuals with autism learn to live and work in the community, access faith communities, enjoy a range of recreational pursuits, become independent in their self-care needs, have meaningful relationships and are active, contributing members of their communities. The importance of such gains must be recognized as a significant benefit of effective treatment. Autism awareness should definitively include a celebration of a broad array of outcomes as was touched upon in our recent interview with Catherine Maurice, author of Let Me Hear Your Voice, as well as editor of a number of other titles. Please also visit our newly created Perspectives page that highlights success stories of young people with autism carving out vocational experiences.
Please visit our website for more information on teaching procedures using the principles of ABA. You may also consider reviewing our library of responses in the Clinical Corner section of the website.
Accountability involves a shared commitment to clearly-defined targets, participation in data collection, respect for and use of the scientific method, social validation, and proper solicitation of informed consent. It should be every treatment provider’s obligation to objectively measure outcomes. No one should be permitted to boast claims that are unsupported by data. No one should get a pass on accountability, transparency, and objectivity just because they come from a particular discipline that has not proven their methods through research.
Providers using interventions that lack scientific support have an ethical obligation to share this fact with consumers, and to exercise caution in making claims about outcomes. Far too often applications of interventions that lack any scientific support are carried out in a manner devoid of transparency and objective measures to substantiate claims of the treatment’s success. This must not be tolerated. Providers must make sound, scientifically-validated decisions and recommendations. Please encourage all members of your team to subscribe to our free newsletter, Science in Autism Treatment. We also have more information on Ethics and Evidence-based Practice.
In the world of autism intervention, peer-reviewed research, which should guide and inform treatment efforts, is too often disregarded or ignored. Imagine a world in which it was deemed acceptable for mainstream cancer providers to treat childhood leukemia with methods they preferred without consideration of existing research. Sadly, that is the reality of autism treatment, as many providers use their personally-preferred methods, often divorced from scientific support and carried out without any objective means to assess benefit.
There are thousands of published research articles that can guide autism treatment. These articles document effective interventions to address a broad range of issues related to autism such as improving conversation skills, promoting academic skills, reducing challenging behavior, and developing tolerance for health care procedures. These peer-reviewed studies are often not accessed by treatment providers and caregivers. Thousands of researchers, experts in their fields, have published their findings in peer-reviewed journals, yet their findings are often overshadowed by a media which emphasizes sensationalism about the “next big thing” in autism treatment over objective scientific research. Please visit our website often to read research synopses and our vast library of treatment summaries.
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 and other important social opportunities for individuals with autism.
Like all families, those with children with autism want to be able to live comfortably and fully within their community. That may mean simply going to the park, enjoying play dates, attending religious services, accessing medical care, going to the movies, or eating at a restaurant. Unfortunately, many families are not able to access these activities because the social community is not sufficiently informed or prepared to include individuals with autism within these settings; and, in some cases, the children are not taught how to manage these situations well due to ineffective treatments. As a result, families of children with autism are often isolated. This lack of opportunity is both a function of misinformation about autism and the lack of awareness about the successful efforts of those who have overcome such barriers. With 1 in 68 children being diagnosed with autism, every facet of society needs to be informed of the supports necessary for individuals with autism to succeed within their communities. The Clinical Corner section of our website contains information on how to successfully include children with autism in the classroom and in their communities, and include people with autism in the workforce.
When children with autism turn twenty-one, funding for services drastically changes. As a result, there are very few quality programs for adults with autism. We are facing a crisis in the field, with a scarcity of services for adults with autism and the absence of a clear strategy for closing the gap between the ever-increasing need, and an unprepared supply of resources. Quality evidence-based services for individuals with autism must continue into the adult years. Research indicates that interventions such as ABA can effectively help adolescents 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 to live and work independently, develop meaningful relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits which are available within their communities. Those are important conversations to have.
ASAT is committed to broadening our scope so that we can be a part of this important and essential dialogue. In response to this need, we are developing a webpage to address lifespan topics. Learn about maximizing employment opportunities, strategies to support older learners, and a guide for transition to adulthood.
We are expanding our collection of research synopses including adolescent and adult participants with autism. Finally, we have written about this extensively within Media Watch. Please see the following examples of some of our letters related to lifespan topics:
- ASAT Responds to abc.news.go.com’s “How A Child With Autism Became ‘His Own Man’ After Treatment”
- ASAT Responds to Psychologytoday.com’s “Making Severe Autism Visible”
- ASAT Responds to NBC News Dateline’s “On the Brink”
- ASAT Responds to Psychologytoday.com’s “NJ’s I/DD community strongly opposes the state’s transition plan: now what?”
- ASAT Responds to ABC.net.au’s “Hope for autistic teens: How Applied Behaviour Analysis helped Ian Rogerson’s son Jack overturn bleak prognosis”
- ASAT Responds to TheStar.com’s “Groundbreaking adult autism survey reveals mountain of unmet needs”
- ASAT Responds to FoxPhilly.com’s “Parents Of Autistic Children Worry What Life Will Bring When They’re Adults”
- ASAT Responds to News.com.au’s “Cost of autistic children cripples parents up to $50,000 a year”
- ASAT Responds to Portland Press-Herald’s “Graduating to an Uncertain Fate”
- ASAT Responds to Triblive.com’s “Pa. Autism Services Hope to make inroads in workplace”
- ASAT Responds to MSNBC’s “1 in 3 autistic young adults lack jobs education”
We hope these 10 ideas have furthered your appreciation of the complexities and nuances surrounding autism awareness. We all play a role in bettering the lives of individuals with autism and helping their families and supporters in becoming skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important discussions and an even bigger part of the solution, for there is much more important work to be done to keep science at the forefront of every conversation about autism treatment.
For more information on how to join ASAT in being part of the solution, please visit our website. On this page you will learn more about how to become a sponsor, volunteer, or extern. Or you can support our work by making a donation. Join us in making a difference in the autism community!
ABOUT DAVID CELIBERTI, PHD, BCBA-D
Dr. David Celiberti is the Executive Director of the Association for Science in Autism Treatment (ASAT). He previously served as the President of the Board of Directors of ASAT from 2006 through 2012. In response to the increasing number of parents attending professional conferences to learn about applied behavior analysis, he also founded the Parent-Professional Partnership SIG for the Association for Behavior Analysis International in 2000 and served as its Co-President until 2014. He had also served as President of the Autism Special Interest Group (SIG) from 1998 to 2006. He currently sits on a number of Advisory Boards in the area of autism, as well as in early childhood education. He has organized fundraising initiatives to support afterschool programming for economically disadvantaged children in Northern New Jersey. Dr. Celiberti is in private practice and provides consultation to public and private schools and agencies in the U.S. and Canada. He received his Ph.D. in clinical psychology from Rutgers University in 1993. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. He has taught courses related to ABA at both the undergraduate and graduate levels, supervised individuals pursuing their BCBA and BCaBA, and in prior positions had conducted research in the areas of applied behavior analysis, family intervention, and autism.