Is Applied Behavior Analysis (ABA) Effective or Traumatic?

Friend or Foe?

For last few decades, Applied Behavior Analysis (ABA) has been seen as “gold star therapy” for autism spectrum disorder and related developmentally-based delays/disorders. In fact, it seemed for a while that the research provided only positive evidence of benefit from ABA. For example: A 2018 meta-analysis stated there was “unequivocal evidence for ABA-based interventions as an effective … treatment for children with Autism Spectrum Disorder (ASD)” and reported that the collective effectiveness (i.e., intellectual, language, adaptive & behavioral functioning) of ABA was reported as moderate to high. However, since then, many clinicians and autistic individuals have come out and shared their own experiences and also provided some evidence against the “unwavering” effectiveness of ABA. But before we get into all that- let’s go back to the beginning.

So, In the 1960’s Ivar Lovaas began using behavioral principles based upon BF Skinner’s behavioral conditioning work to treat both gender non-confirming and autistic individuals in an attempt to make them fit into society. ABA, which was initially popularized in the late 80’s, is based upon reinforcement schedules and behavioral contingencies (e.g., rewards and punishment) via discrete trial training, although there have been some recent offshoots of traditional ABA. Behaviorism is also based upon the ABC model, which is Antecedent (what happens before/situation), Behavior, Consequence (what happens after/result), the idea is by controlling the antecedent and/or consequence, you can modify the person’s behavior. The early aim of ABA was to shift and “improve” the developmental trajectory in a positive manner via 1:1 therapy 20 to 50 hours per week.

Also, the Defeat Autism Now! Program, which endorsed ABA, was introduced in 1995 by Dr. Rimland in an effort to find a “cure” for autism and aimed to identify alternative treatments (e.g., special diets) outside of traditional or research-backed mental practices.ABA was described as a way to “shape up” “disallow indulgence” and “re-program” autistic children, with poor generalization outside the home at this time. ABA may mildly improve quality of life for some individuals, especially during childhood when therapy is active; however, the economic cost is significant and the benefits may not outweigh the costs. ABA has been endorsed and considered “best practice” by many large public and private organizations within the US and Canada. Often insurance companies will not cover therapy that is not behaviorally-based or labeled as “ABA”, which makes parents feel as though they do not have a true choice.

Though past meta-analyses seemed to support the efficacy of ABA, especially for “lower-functioning” or higher-support needs children and were reportedly biased in their outcomes(conflicts of interests of researchers, dual roles of researchers, parent reports/expectations, lack of control group/case studies, lack of random assignment, lack of follow-up measures, small sample sizes or case studies, selection/performance bias), more recent meta-analyses have demonstrated no to minimal benefit in most populations in terms of IQ, receptive language, repetitive behavioral patterns, and motor skills, with potential mild to moderate benefit in socialization, adaptive skills, and expressive language skills when compared to control or treatment as usual groups. Of note, the longer the intervention, the greater the progress, but on a slow basis and significant variability in outcomes and long-term benefits. There has been some documentation of some behavior analytic principles (e.g., preferred rewards, modeling, using visual supports/schedules) being effective in medical settings for children with significant fears and/or overstimulation in an effort to avoid sedation or restraints.

As I mentioned, historically there had been a lack of input of autistic individuals in the feedback and research pertaining to behavior therapy. Per new research, interviews, first-hand reports, and more, it appears there is a portion of autistic individuals who feel as if they benefited from ABA and see its value in building social and coping skills and redirect self-harm behaviors, when executed respectfully, appropriately, and with good intentions, while another portion of autistic individuals who feel as if ABA is abusive, manipulative, ableist, and one-sided, at times resulting in depression, anxiety, PTSD, and dissociation. Ableism has been defined as the exclusion and diminishing of the value disabled and neurodiverse individuals through a complex system of oppression which holds them to account on the strengths of able and neurotypical individuals. Some advocates or lack thereof have been invalidated by others stating they “must deal with the social world as if they are not disabled”, further encouraging masking behavior. Additionally, research has demonstrated that autistic children have altered reward pathways in terms of dopamine and GABA, and are motivated in different ways than neurotypical/allistic peers. As such, a reinforcement-based rigid therapy, such as ABA, may not produce the desired effect, not to mention different desires and interests.

Many have reported that their intervention was contingent on repeating certain tasks in order to avoid punishment. Some individuals were reportedly (and some confirmed by research) to be shocked, restrained, physically assaulted, ignored, or force-fed or denied food, which of course is especially concerning when a child has limited communication skills. Additionally, many have reported that they felt dehumanized, invalidated, controlled, and/or terrified, and feel as though their personality was molded or manipulated by others.Traditionally, many ABA protocols have included extinguishing “stimming” or self-stimulatory behaviors that often serve to reduce stress, provide stimulation, and self-regulate. As Barry Prizant explains in his book, Uniquely Human, “echolalia tends to calm, clarify, or communicate and can sometimes be comforting or helpful to remember information, and is often misunderstood.” Barry Prizant also explained that “FBA (or functional behavior assessments) can easily misunderstand or mislabel the “reason” for a behavior. For example, a child running outside of a classroom may be excited for music class or misunderstood the schedule for the day as opposed to “escaping.” Many have also discussed the frustration with harping on eye contact, which does not serve a true adaptive or functional benefit other than conventional social norms. Some have expressed that they continue to fear consequences, feel prompt-dependent, and being “bad” even in adulthood. Per one individual’s report, “ABA made it much harder to make friends, because I was spending so much time trying to pretend to be someone I’m not that I could never really connect to people.” Another concern has been the training of many of the ABA therapists who work directly with autistic children often has minimal training regarding autism, underlying brain function, and child development. ABA has also been criticized as being a purely behavioral approach to a neurological disorder/difference.

Though likely an outlier, the Judge Rotenberg Center outside Boston, MA has received significant criticism for continuing to use shocks and physical punishment on both children and adults in the guise of ABA therapy. As Jennifer Msumba explains in her book, Shouting At Leaves, ABA used incorrectly can be abusive. During her time at the Judge Rotenberg Center, Jennifer recounts being shocked electrically for: echolalia, rocking, vocalizations, crying, and questioning. ABA also reinforces the idea that autism is something to “fix”, “cure”, or “recover from.” There have reportedly been several positive changes in the ethical code and execution of ABA, with little to minimal punishment or ignoring, and lack of physical correction. Some advocates for ABA have stated that therapists have an obligation to prepare children with autism for the world in which they currently live, even if society is less accepting than desired. In terms of self-injurious behaviors, some have argued that although well-intentioned to stop harm, many of these behaviors are a form of communication that is ultimately being ignored. Oftentimes, children and teens with ABA are not involved or consulted in terms of their goals and programs with ABA. As Devon Price states in his book, Unmasking Autism, “up to 46% of ASD adults have reported PTSD from ABA and the efficacy of ABA has been based on behavioral results, not emotional states or self-report, which is further complicated by ABA being one of the only “treatments” approved by insurance.ABA has also been described as consumer-based as opposed to client-based. I think something to consider here, is whether a particular intervention is “effective”, “successful”, or truly serves a true benefit for all parties.

Clinically, I have observed ABA improve a number of adaptive skills, including independent toileting, showering, expressing themselves, reduced self-injurious behaviors, and basic academic functions. In fact, I actually worked as an ABA therapist at a school for children with developmental differences during my college years and observed many positives (and perhaps was blind to some negatives) during my experience, which drove my passion for working with children with differing needs. I felt empowered, I felt hope, and I felt joy. Though I was fortunate to see children recognizing their names for the first time, saying their first words, engaging in cooperative play, and brushing their teeth on their own, I did not think at the time about  the experiences of these children at the time and as they became adults. Additionally, there were many other children that I observed made minimal progress in terms of meeting milestones across the years I was present. I have had to relearn and reconsider many things in my years as a psychologist. In fact, when I was in school, we were instructed to always use diagnosis-first language. That is, “a person with autism”, rather than autistic person. Even recently, I have worked with many families who have been extremely pleased with their child’s ABA program, especially those that have hands-on experiences, vocational training, flexibility, and fun, and those which continue to provide opportunities through adulthood.

I will leave you with a couple of quotes from the book: Sincerely, Your Autistic Child to ponder on and consider prior to deciding what is the best fit for your child. Katie Levin states in the book “I wish I could have grown up in an environment where I wasn’t constantly treated like I was broken. I felt like I wasn’t okay unless I learned to act like everyone else” and Lei Wiley-Mydske added that “I was conditioned early to know that my saying “no” was not an option, certain “atypical” behaviors needed to be eliminated, and being compliant made me “good.”