The Importance of ABA Awareness and Expertise

Applied Behavioral Analysis (ABA) has proven effective  in teaching communication, self-help skills, socialization and academics to people on the spectrum.   It has been around for over thirty years and is the only autism therapy that can boast results backed by peer-reviewed research.  In other words, it really works and the data bears this out.   Why, then, is good ABA so hard to get?

There are a few key reasons, all of which are related:

1) Most people have never heard of ABA or don’t understand its benefits.  

 By “most people,” I’m  referring  to the general public.   Although I don’t have the numbers to prove this, anecdotal evidence suggests that there is also a significant number of autism parents who are not very familiar with the benefits of ABA or its foundation in science.   A common misperception is that ABA is beneficial only in eliminating bad behavior;  i.e. tantrums.   This partial definition from Autism Speaks provides a more complete picture:

Behavior analysis is a natural science of behavior that was originally described by B.F. Skinner in the 1930’s. The principles and methods of behavior analysis have been applied effectively in many arenas. For example, methods that use the principle of positive reinforcement to strengthen a behavior by arranging for it to be followed by something of value have been used to develop a wide range of skills in learners with and without disabilities.

Since the early 1960’s, hundreds of behavior analysts have used positive reinforcement and other principles to build communication, play, social, academic, self-care, work, and community living skills and to reduce problem behaviors in learners with autism of all ages. Some ABA techniques involve instruction that is directed by adults in highly structured fashion, while others make use of the learner¹s natural interests and follow his or her initiations. Still others teach skills in the context of ongoing activities. All skills are broken down into small steps or components, and learners are provided many repeated opportunities to learn and practice skills in a variety of settings, with abundant positive reinforcement.

A typical ABA session looks something like this: 

 

There is a general consensus among autism advocacy groups on the benefits of ABA, but this is not always apparent from their messaging or their stated missions.  Even organizations with a mission to promote biomedical interventions advocate the use of behavior-based treatment.  For example,  Defeat Autism Now! (DAN)  is promoting the successes of ABA as shown in this press release.   Talk About Curing Autism (TACA ) which advocates biomedical intervention and used Jenny McCarthy as a spokesperson acknowledges the effectiveness of ABA as the “gold standard” among behavior-based therapies on their website.   Ms. McCarthy, the most visible parent advocate, uses her soapbox to talk about a supposed connection between autism and vaccines rather than the role of ABA in the treatment of her own autistic son.

There have been other missed opportunities to promote a greater awareness of ABA and its benefits.  The current ad campaign by Autism Speaks advocates insurance coverage for necessary therapy, but the message is muddled in the theme of  “Insurance Discrimination” and in the scene depicted. The ad doesn’t indicate which therapies should be covered, and if I didn’t understand the costs and the range of benefits associated with ongoing ABA, I wouldn’t have figured it out:

        2) There are very few people who know how to do it.   This is true even here in New Jersey where there is a relatively high number of autism spectrum diagnoses and ABA training programs.  My son is in an ABA-based school program and he also receives ABA and speech therapy at home.  Even though we were willing to pay for the services, we were only able to secure consistent, quality home services through a family connection and a little bit of luck.  Specifically, my mother-in-law, a college professor of education, hooked us up with one of the state’s leading experts on autism and ABA.   It’s accurate to say that my son’s recent progress in toilet training, non-verbal communication, self-feeding and maintaining focus on a range of tasks is due to money and connections.

      3).  It’s really expensive.  (See #2).

ABA therapy can cost from $60-100/hr, depending on the experience of the provider.  Sometimes these costs are covered by a school district.  Sometimes they are not.  The good news is that there has been considerable recent progress in mandating insurance coverage as a result of efforts by Autism Speaks (in spite of the messaging issue previously mentioned) and other organizations.

Greater awareness of ABA may ultimately result in increasing the numbers of smart and talented people who elect to become experts in the discipline.   However, even with increased insurance coverage, there will be battles with providers, school districts and government agencies over the significant costs associated with guaranteeing continued effective services.  There will always be limits to the amount of  expert therapy that can be utilized by parents.   A related and more important outcome of increased awareness would be an increased ability of parents to personally implement proven methods with their own children.    I don’t expect to become an expert in ABA  or any other behavioral therapy, but my wife and I know our son better than anyone else.  With training and even occasional access to the real experts, there is nothing that prevents us from using (an approximation of) these methods to supplement expert therapy funded by our school, our insurance company or ourselves.