We write in reply to Karola Dillenburger’s response to the recently published Expressionof Concern issued by the journal in relation to research undertaken by HennyKupferstein (2018, 2020), which suggested the possibility of a link between post-traumatic stress symptoms (PTSS) in autistic people who had undergone applied behaviouranalysis-based interventions.
The journal has alerted its readers as follows: “that concerns have been raised that the research, and therefore article, may contain a possible error in research standards. An investigation is ongoing and is currently unresolved. Further information will be provided by Advances in Autism as it becomes available”. Dillenburger adds that any reference to Kupferstein’s paper should be viewed “with extreme caution”. We disagree with most of Dillenburger’s comments and contribute the following thoughts to the investigation.
For the record, the author responded to earlier criticism of Kupferstein’s work by Leaf et al. (2018) writing that “her findings appear to us to justify the expression of concern about a possible link between ABA and PTSD” and concluding “Unless and until there is clear scientific evidence against Kupferstein’s preliminary finding of a link between ABA and PTSD, we think she and this finding should be taken seriously” (Chown et al., 2019, p. 318). We felt that the methodological criticism by members of an organisation funded via a major charity was unfair to a sole, unfunded researcher undertaking academic work in her spare time.
Some seven years after Kupferstein published her original paper suggesting a link between PTSS in autistic individuals who had been in receipt of ABA-based interventions, Kupferstein’s work has been attacked again. Before responding to the methodological issues Dillenburger raises, we want to focus on the matter which takes up about one-third of her letter, namely the category error made by Kupferstein in referring to people who “received ABA”. We agree that this is a category error but regard it as a trivial error. To write of “receiving ABA” is common parlance, indeed a search of the literature shows that about 1,200 items use this incorrect form of words. Kupferstein uses a correct form of words (e.g. received ABA-based interventions) elsewhere in her work. Why Dillenburger chooses to make so much of a trivial error only she knows. But what concerns us most in this regard is that she uses Harold Shipman – arguably the worst serial killer in British history – in an example of a similar category error. Whilst she does not make a direct comparison between Kupferstein and Shipman, there is a risk of readers associating the two. At best this indicates a lack of empathy on the part of Dillenburger.
Dillenburger goes on to stress “that behaviour analysts are highly skilled certified or licenced professionals […] who have undertaken masters or doctoral-level training at accredited universities, extensive supervised pre-qualifying practice and continuous post-qualifying education”. What she does not mention is that the large majority of ABA practitioners have not received training in autism. The first author has undertaken training to qualify as a Registered Behaviour Technician (to better understand ABA, not to practice). The 40-hour course involved did not include any content on autism even though the organisation involved only works with autistic people. We argue that no one should work with autistic people without a thorough understanding of autism. It has been written that “none of the As in ABA stand for autism” (Dillenburger and Keenan, 2009, p. 193): as so many practitioners of ABA-based interventions work with autistic people it is high time that they understood the missing A for autism. This principle must apply to all autism interventions of course, not just those based on ABA.
We now respond to the methodological points raised by Dillenburger after corresponding with Kupferstein regarding her methodological practice, which Dillenburger did not do.
In conclusion, we remain of the view that “Unless and until there is clear scientific evidence against Kupferstein’s preliminary finding of a link between ABA and PTSD, we think she and this finding should be taken seriously”. We hope that in future researchers will seek to prove one way or the other whether ABA-based interventions may cause harm to autistic people rather than continue to criticise a major achievement for a sole, unfunded researcher working in her spare time. We hope that the criticism of Kupferstein is not an example of anti-autism bias.
The author is involved in a dialogue with ABA academics at a major US university. We have shown that critical autism studies scholars and behaviourist scholars can sit at the same table. But is cooperation between these disciplines on the trauma issue too much to hope for?
Nicholas Paul Chown, FIRM, PG Cert Asperger Syndrome, MA Autism, PhD
