Earlier this year a research paper was published that reports shocking rates of Post-Traumatic Stress and mental health problems among autistic people who have undergone ABA.
ABA is Applied Behaviour Analysis, an intervention typically used in childhood to modify behaviour. It derives from the work of Ole Ivar Lovaas in the 1960s in which he experimented on children, subjecting them to electric shocks and other so-called aversives to force them to comply with his directions.
Now, ABA has moved on from those days when children were openly tortured and abused, and contemporary practitioners can tell you how they no longer rely on aversives or otherwise punish children, but instead use systems that are rewards-based.
There is considerable debate within autistic communities about the merits and drawbacks of various therapies, and ABA is probably at the top of the list for the sheer amount that has been written about it. So what am I doing writing more about it? What can I possible add?
The answer is simple. I have been going through research that investigates ABA and its related behavioural therapies and I noticed one glaring omission. Almost every paper focuses on demonstrating the effectiveness of the interventions in modifying behaviour. But with a single exception they have never investigated whether there are any long term effects on mental health.
Until Henny Kupferstein published her paper Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis in the journal Advances in Autism earlier this year there was not a single published report that I have been able to find that even asked the question of whether these interventions are safe in the long term.
Why has this omission not been recognised before? A 2000 paper by Laura Schriebman, Intensive behavioral/psychoeducational treatments for Autism: Research needs and future directions, published in Journal of Autism and Developmental Disorders, identifies the lack of research into long term impact and is cited in a paper from 2016 that says,
There is limited literature on the long term effects of the use of ABA interventions on young children and their progression into adulthood. Sallows and Graupner (2005) demonstrated the positive impacts that ABA based early intensive behavioral interventions (EIBI) have on the development of young children over four consecutive years while Healy, O’Conner, Leader, and Kenny (2008) used similar interventions over the course of three years. EIBI interventions are built upon the pioneering work of Ole Ivar Lovaas at the University of California Los Angeles in the 1960’s. Researchers such as Schreibman (2000) have called for specific research in the core ABA areas of generality and maintenance of behaviors in an effort to bolster the long term impact of ABA based therapies.
So this lack of knowledge about long term impact has long been recognised. This all points to a collective failure of their responsibility of care among behavioural therapy practitioners and researchers: they have failed to demonstrate that these therapies are safe, or even that the long term safety has been considered!
These interventions are most often used on some of the most vulnerable in society: our children, autistic children. Autistic people have been reporting long term problems for years that they trace back to ABA and related interventions. With Henny Kupferstein’s research paper now, we should be ringing the alarm bells and demanding action.
If this was a pharmacological rather than psychological treatment it would have had to go through clinical trials to demonstrate an acceptable level of safety, and its approval would be subject to review if evidence of problems came to light later on.
Just because it doesn’t involve a drug doesn’t mean it can’t be harmful. Psychological interventions need to be subjected to the same scrutiny as medications. If half of the people prescribed Ritalin, for example, showed symptoms of post-traumatic stress some years later, would you not expect that to be investigated?
So what is different with ABA and its related family of behavioural interventions that include EIBI (Early Intensive Behavioural Intervention), IBI and PBS (Positive Behaviour Support)? Why are they not being investigated given the many reports of mental health problems in later life?
There is a lot of money involved in these behavioural interventions. Is that enough reason to overlook reports of problems? These interventions carry a hidden cost, and it’s paid with the lives of our children.