At least from a research perspective, we don’t have a clear idea of how Applied Behavioral Analysis therapy (ABA) impacts autistics, especially after they’ve grown up and out of ABA programs. We do, however, have countless personal accounts of the damage this therapy has caused. Yet, it appears that researchers haven’t dug in to the entire generation of autistic adults who experienced this therapy to see what outcomes have actually occurred[1].
This month we’ll talk about some of the newer research coming out about ABA therapy and what real impacts it’s having on autistic children and adults.
FIRST, WHAT IS ABA?
ABA therapy was developed in the 1960s by a man named Ivar Lovaas.
The original form of ABA therapy used physical abuse as liberally as loving reinforcement. I don’t want to get too deep into its dark history, so unfortunately you will have to go elsewhere for that (“good” news is there are plenty of resources).
“In short, the original forms of ABA amounted to physical and mental abuse done by adults to autistc kids. Some punishments included slapping children in the face and electric shocks.”
Things have since changed, cutting out all or most forms of physical abuse, and it’s now claimed to be a humane and effective treatment for autism. However, we have countless accounts of adults who have gone through ABA therapy and their experiences say otherwise.
Today, ABA makes use of operant conditioning to stop or create certain behaviors in response to prompts. ABA therapy is recommended at 40 hours a week, often in addition to school and sometimes more if parents implement it at home. In treatment, autistic kids learn how to comply with the therapist’s expectations of them. Therapists encourage compliance by offering rewards, such as snacks, candies and attention, but also punishments, like taking away toys, ignoring the child, and sometimes even actions like squirting the child in the face with water (something I’ve found purely ineffective on pets, so why would it work on a person?)[1].
“ABA will also often attempt to prevent stimming behaviors, which have been found to be beneficial for autistic people in regulating emotions, sensory input, and processing[2].”
All of this to attempt to make autistic children appear neurotypical. Some proponents of ABA will claim that it “cures” autism or makes autistic children “indistinguishable” from their peers, but not only is it impossible to cure a brain structure, I also highly doubt these children are truly indistinguishable. Research has started to show that prompt- and reinforcement-based conditioning doesn’t generalize to everyday situations. So they may be “indistinguishable” during therapy, but what about out in the real world?[1]
Another point: don’t we encourage neurotypical children to stand out from their peers? So why then would we silence and force children who do stand out to conform when they’re not hurting anyone?
But I digress.
RESEARCH GAPS
What are the impacts for autistic adults who went through ABA?
ABA is very often cited as an evidence-based treatment for autism. However, much of this research is old, and many of the new research papers focus only on children and the immediate impacts following the training[1]. I have yet to find a paper focused on the impacts after autistic people age out of ABA, or on the lasting effects of autistic adults who went through this therapy as children.
ABA has been around since the 1960s. There is an entire generation (and then some) of autistic adults who may have had ABA therapy as a child, and yet, this research is either sparse or nonexistent. This seems a serious oversight to me. The population is there – so why isn’t the research following? Isn’t it important to look at how therapy impacts people throughout their lifetimes, especially if it hasn’t been looked at before?
This oversight becomes more serious as you consider the personal accounts of ABA from autistic adults. You may have seen personal accounts of how ABA felt from the child’s end and the impacts that followed them into adulthood. The themes jump out to me: ABA is unfair, confusing, abusive, and it leads to feelings of inadequacy, increased anxiety and depression, sometimes even PTSD.
“The themes jump out to me: ABA is unfair, confusing, abusive, and it leads to feelings of inadequacy, increased anxiety and depression, sometimes even PTSD.”
These accounts are basically “case studies” – often a first step to conducting larger research projects. Accounts and descriptions from autistic adults are more than enough to set the scene for future research – but for some reason, researchers (especially ABA ones) refuse to listen and take us seriously.
Since we don’t have these long term impact studies, I don’t trust claims that ABA is “evidence-based” or an effective treatment.
Issues with the research showing ABA’s “effectiveness”
An additional issue is that ABA efficacy (effectiveness) studies have been done primarily with audiences that aren’t the prime target of ABA therapy. Autsitic children who communicate well in spoken language are the audiences most frequently used in ABA research. However, non-speaking groups are often excluded from research BUT they are prime targets of ABA therapy.
Actually, researchers often see non-speaking autistic children as “untestable”[1], which frankly, is lazy on the researchers’ part. Non-speaking autistic populations are not only excluded from research, but they are more likely to receive continual ABA over a longer period of time. This may happen because ABA is ineffective for them, so they “fail” to meet the mastery criteria ABA outlines, and therefore receive additional training.
If these children “cannot be tested”, then they should not be candidates for an intensive behavioral treatment.
“There are essentially no studies showing that ABA is effective in non-speaking autistic children. Yet, they seem to be subjected to ABA the most intensely.”
OUTCOMES
The desired outcomes of ABA seem pretty obvious: suppressing autistic traits, behaviors, and responses, encouraging and training neurotypical traits and responses. ABA hopes to set the stage for autistic children to grow into independent autistic adults that fit into the neurotypical world.
Essentially ABA aims to make autistic children “indistinguishable” from neurotypical ones. But these “desired outcomes” are defined by the people in power, what they see as “good” or “bad” with little concern for the person they train – as long as they’re complying.
Are these outcomes actually good for autistic people?
Are they actually what’s happening?
It appears not from the personal accounts I’ve mentioned above. Instead, “schools, ABA specialists, and researchers are learning that such intensive and chronic conditioning has instead amounted to compliance, low intrinsic motivation, and lack of independent functioning – the latter of which is the presumed goal of ABA therapy in the first place.”[1] These are not desirable outcomes for any population.
“Are these outcomes actually good for autistic people?”
In a similar vein to ABA, social skills training is popular among autistic adolescents. Some studies of social skills training done with autistic children and adolescents show improvement, but I see flaws in how they gauge success.
Researchers often rely on parent ratings instead of researchers observing the children in real-world social situations. Parents can often tell which treatment their kids are receiving, and something similar to the placebo effect can happen here too: what the parents expect colors their perceptions, impacting their responses given to researchers.
Social skills training doesn’t really use punishments or rewards, but they follow the same prompt format as ABA does (e.g., if someone says “hello!” you should say “hello!” back). But there’s mounting evidence that prompts don’t generalize to real world experiences[4].
Finally, there are other outcomes associated with ABA therapy and compliance training. Some research shows an increased risk of suicide and PTSD in autistic adults that receieved ABA therapy as children[1].
There is also an increased risk of sexual abuse and other physical and mental abuse in adults and children who have received ABA or compliance training[1].
The specific prompts for compliance aren’t generalizing, but overall compliance of these individuals increases, often making an already vulnerable population more vulnerable. Are these other outcomes worth compliance in some cases? Do ABA therapists and researchers even care that they’re putting a vulnerable population at further risk of abuse?
UNQUALIFIED PROFESSIONALS
ABA therapists, certified by the Board Certified Behavioral Analysts (BCBA), aren’t required to have prior training or studies in autism, or even child or developmental psychology[1]. How are they supposed to effectively work with children that they know little about? I don’t know what ABA training looks like, but my impression is that it has more to do with implementation than it does with autism or the children they’ll be working with. Shouldn’t the focus in therapies and treatments be on the individual receiving them, and what works best for that person?
AN INAPPROPRIATE THERAPY
If we can look beyond the unqualified professionals and the mounting evidence that ABA is harmful, there are other reasons why ABA is an inappropriate therapy for autism.
The first has to do with research gaps.
As I mentioned above, ABA research neglects to include its most popular population: non-speaking autistic children. The “effectiveness” of ABA therapy is almost always shown in groups of speaking autistic children, but this isn’t the primary audience of ABA therapy. So when defenders of ABA therapy cite research, we must question if it actually supports their claims or if they’re making generalizations from loosely connected data. Non-speaking autistic children are vulnerable in additional ways – they cannot communicate in a way that their therapist will listen to, or sometimes even allow based on ABA therapy’s principles. Movement can be a primary, or only, way for autistic people to express themselves and communicate, both consciously and unconsciously. Suppressing stimming and repetitive motor movements could be seen as the same as interrupting someone while they’re speaking.
There is also some research to indicate that while behavioral treatments, like ABA, show improvement in some areas, they don’t even begin to consider other aspects of mental health in autistic people[3]. ABA and other behavioral treatments may be making things worse, as they can clearly be stressful and even traumatic. Seriously, 40 hours of therapy a week?! Plus school? As an adult, I can’t even manage a 40 hour work week without burning out quickly.
“Why would you treat a child that probably has anxiety with a therapy that’s very likely to make that anxiety worse?”
Another reason ABA is inappropriate, and one that has quite a bit of research backing it, is that ABA is not an effective treatment for anxiety. In fact, there is evidence that it may increase anxiety[1].
Autism and anxiety are highly comorbid, meaning that autistic people often also experience anxiety for various reasons, biological or environmental. This bears the somewhat obvious question: Why would you treat a child that probably has anxiety with a therapy that’s very likely to make that anxiety worse?
I think this goes to show that ABA therapists don’t have the necessary background, education, and additional experience with autism and its co-occurring conditions. Otherwise, surely, this question would come up more often, and ABA wouldn’t be as widely used.
Where’s the money?
In the US, ABA is one of, if not the only treatments that health insurance will cover as an autism therapy. This limitation causes many issues:
(1) spreading the harm ABA causes,
(2) leading to other therapies calling themselves ABA to receive funding even though they’re not actually ABA (insurance fraud), and
(3) severely limits other options if a parent questions whether ABA is the right therapy for their child.
I’m sure there are other consequences I haven’t discovered either. What other conditions have only one option that will be covered by insurance? Why would anyone assume that a single therapy would work for everyone?
On a final point, in 2017, estimates showed that the ABA market share was about 17 billion dollars in the US[1]. Is it starting to sound to you like ABA is more about making money than it is about helping autistic children grow into successful autistic adults? Because that’s what it sounds like to me – that capitalism and the need to grow one’s own career outweighs the detrimental impact ABA is having on autistic people, and that the outcomes for autistic people aren’t really even considered.
CLOSING THOUGHTS
“ABA is often compared to dog training for children, playing into the dehumanization of the therapy.”
I remember first learning about ABA in an introductory psychology class. I didn’t know I was autistic at this point, but I still remember thinking, “Wow, so we’re just training children like Pavlov’s dogs?”
ABA is often compared to dog training for children, playing into the dehumanization of the therapy. However, as this dog trainer says after looking to ABA for themself, “I would never treat a dog that way.” ABA disregards a person’s own wants and needs, the best way they learn, and many other things for the sake of conformity.
“As research continues to find negative impacts on children and adults who have been subjected to years of ABA interventions, psychologists need to ask themselves whether or not this archaic approach to treating ASD is in line with their oath to do no harm.”[1]
“ABA disregards a person’s own wants and needs, the best way they learn, and many other things for the sake of conformity”
ABA seems like just another vehicle to dehumanize autistic populations. How ABA is researched and implemented is dehumanizing, and in a way, needs to be. Otherwise, would we ever be able to justify treating humans this way?
What do you think?
Did you experience ABA therapy or social skills training?
How did they impact you in the long term?
Was ABA the only therapy option available to you or your child?
Do you feel ABA helped or hurt?
Readers in other countries – please chime in with your experiences about ABA and other autism therapy accessibility below!
Sullivan is an autistic yoga teacher & researcher striving to share more coping tools (such as yoga & meditation) and research (like this article) with the neurodivergent community and beyond. Blending her background in psychology and mental health with yoga, Sullivan strives to share the peace, self-acceptance, and physical awareness yoga and mindfulness has brought her. Sullivan also has a background in psych and market research, and is now using these skills as the resident researcher at Planet Neurodivergent.
References
Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, 6(1). doi: 10.1080/23311908.2019.1641258
Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism, 23(7), 1782–1792. doi: 10.1177/1362361319829628
Fuld, S. (2018). Autism Spectrum Disorder: The Impact of Stressful and Traumatic Life Events and Implications for Clinical Practice. Clinical Social Work Journal, 46(3), 210–219. doi: 10.1007/s10615-018-0649-6
Barry, T. D., Klinger, L. G., Lee, J. M., Palardy, N., Gilmore, T., & Bodin, S. D. (2003). Examining the Effectiveness of an Outpatient Clinic–Based Social Skills Group for High-Functioning Children with Autism. Journal of Autism and Developmental Disorders, 33(6), 685–701. doi: 10.1023/b:jadd.0000006004.86556.e0
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