According to the Centers for Disease Control, one in 59 children will be diagnosed with autism, many by age four.
This number has grown over the past few decades, perhaps because of greater recognition or to changes made in the diagnostic criteria. And, right along with the increase in prevalence, the amount of research being done on the disorder has expanded. But, as is typical with research in many fields, the path from the laboratory to the clinician’s office is not always a straight line.
Getting that information out to organizations, schools, and practitioners is key, said Cynthia M. Anderson, Ph.D., BCBA-D, senior vice president of applied behavior analysis and director of the National Autism Center at May Institute.
The institute is a non-profit organization that provides educational and rehabilitative services for individuals with autism spectrum disorder and other developmental disabilities.
In her dual role with the institute, Anderson provides consultation and support to clinical staff along with promoting research and the dissemination of evidence-based practices that can make a difference on the front lines for people with autism.
She spoke with New England Psychologist’s Catherine Robertson Souter about her work and the role of research in education and treatment.
How did you, personally, choose to work in the field of autism?
I am a clinical child psychologist by training and my theoretical orientation is behavior analytic. Early in my training, I worked in an intensive treatment program for individuals with disabilities who engaged in (often life-threatening) challenging behavior. I saw that the principles of behavior could be used to affect meaningful changes in people’s lives, and I was hooked.
This idea of affecting meaningful change has guided your work?
Throughout my career I’ve been passionate about disseminating evidence-based practice and, particularly, better understanding what it takes for a research-supported practice to be adopted and sustained in real-world settings. This passion led me to my current role at May Institute.
What is your role there?
I guide our clinical approach and services. This gives me the opportunity to affect positive changes across all the individuals we serve, and this has been incredibly rewarding.
I am also able to conduct community-based research at significant scale to examine the variables that inhibit or facilitate the uptake and use of evidence-based practice.
You recently completed a study called “Students with Autism Accessing General Education,” funded by a three-year, $1.5M grant from the Department of Education’s Institute for Education Sciences. Can you tell us about that?
The SAAGE was a multi-site study examining the feasibility and promise of a modular intervention framework for children with ASD in public schools.
First, we conducted focus groups with parents, teachers, and school administrators to assess the perceived feasibility of our intervention framework and to identify potential barriers and enablers. We then conducted a pilot study (an under-powered RCT) to assess the feasibility of our measurement protocol and the promise of SAAGE to deliver meaningful outcomes.
The results of our study suggested that SAAGE was both feasible and socially valid and had the potential to result in significant positive outcomes for students.
What happens next with the study?
We have applied for funding to conduct a full-scale RCT. If our next study shows that this intervention framework is indeed effective, it will be the first comprehensive, manualized intervention with documented efficacy for use in school settings.
Your work with schools and research has given you the opportunity to interact with communities across the globe. Have you seen regional differences in the support offered for those with autism?
Yes, there are differences regionally and internationally. Nationally, we also see racial disparity. For example, Hispanic children are about 65 percent less likely than white children to be diagnosed with autism spectrum disorder (ASD), and black children are about 19 percent less likely.
Families in rural areas often face challenges in receiving diagnostic and intervention services. Fewer providers and greater geographic distances, combined with other factors, lead to later diagnosis and less access to intervention.
A lack of providers will certainly be a road block to getting treatment out to the public.
Interventions derived from the science of behavior analysis are viewed as the gold standard in addressing the core and associated features of ASD. This approach often is referred to as EIBI (for young children) or applied behavior analysis (ABA).
Psychologists, speech therapists, and other professionals with training in ABA provide these interventions. However, the majority of ABA providers are Board Certified Behavior Analysts (BCBAs) and there are significant regional differences in the proportion of BCBAs available.
For example, there are about 90 BCBAs in Arkansas and 2,400 in Massachusetts. The population of Massachusetts is twice that of Arkansas; with equivalent numbers of BCBAs for the population, we’d expect 1,200 in Arkansas.
We see similar discrepancies across the globe. As the Global Autism Project points out, over 80 percent of people with ASD are in developing countries where access to services is limited or non-existent.
I recently traveled to India to visit a school for children with ASD and speak at a conference. In India, where the population is over 1.3 billion people, there are about 40 BCBAs.
What do you find to be the biggest issues facing public and private schools and organizations? Finances, stigma, lack of information (all of the above)?
All of the above. For schools and for other provider organizations, the biggest challenge faced is probably insufficient resources to meet the diverse needs of the individuals they serve.
More people have been diagnosed with ASD over the past few decades. Are the numbers actually increasing or is the disorder being recognized more?
The increasing prevalence of ASD is most likely due to the broadening diagnostic criteria. A child diagnosed today might have, 30 years ago, been diagnosed with intellectual disability, a childhood disruptive behavior, or gone undiagnosed.
But this broadening of the criteria can lead to issues within the field?
The expanding diagnostic criteria have resulted in a broad spectrum with a vast array of behaviors.
It is mind-boggling that a person with no means of communicating wants and needs, severely restricted adaptive behaviors, and self-injury can receive the same diagnosis as a person who holds a doctoral degree in chemistry, has a full-time job, but struggles with the subtleties of social interaction.
It is no surprise that ASD is often not well understood by professionals as well as by parents and other stakeholders.
What is the best way to get information on working with autism out to schools and other organizations?
There are a number of websites that provide useful tips and guidance for professionals, parents, and others looking for information, and we can refer people to these sites. One such site is the National Autism Center at May Institute (www.nationalautismcenter.org) and another is the Association for Science in Autism Treatment (https://asatonline.org/).
The internet is the “go to” for most people; it is both the best and worst source of information. A Google search for “autism intervention” turns up over 70,200,000 hits. Some of these are excellent resources but others are suspect at best. For example, near the top of the list was a site promoting chelation therapy—an “intervention” that can be very harmful.
Are there things that even most psychologists (those who do not specialize in autism) would not be aware of today?
Research on interventions addressing core and associated features of ASD has increased dramatically in recent years.
Recent reviews of the literature demonstrate that interventions based on the science of behavior analysis are the most effective. One example is the National Standards Project, disseminated by the National Autism Center at May Institute.
By Catherine Robertson Souter