Neurodiversity, Advocacy, Anti-Therapy
- August 2022
- In book: Handbook of Autism and Pervasive Developmental Disorder
- Robert Chapman
- Virginia Bovell
The internet is awash with forums and first-person accounts of autistic people who describe their experience of receiving ABA as traumatic and harmful (Asasumasu, 2013; Kirsty, 2017). The trauma relates not only to how ABA was practised on them – for example the use of aversives that characterised early ABA programs – but also to the feelings of being powerless and regarded as essentially flawed by virtue of being autistic. At the same time, it has been found that adverse effects have been seriously understudied in research on autism interventions, so there is little evidence to the contrary (Bottema-Beutel et al 2020).
Preliminary – and highly controversial – research by Kupferstein (2018) indicated that the incidence of PTSD was far greater amongst those who had received ABA as children than amongst those who did not. The Kupferstein study was was quickly criticised by Leaf et al (2018) for its methodological limitations. In turn Chown et al (2019) pointed out that the vested interests of Leaf et al and endorsed the Kupferstein findings as requiring further investigation. In line with Chown et al’s suggestion, a recent thematic analysis of the perspectives of twelve autistic adults who had experienced ABA for more than six months found that they tended to associate ABA both with trauma and with a long term negative impacts on their sense of self (McGill and Robinson 2020). While this is based on a small sample, it is worth noting that more robust research found that the extent to which people camouflage signs of autism in order to emulate being NT correlates with suicidality (Cassidy et al., 2019) and depression (Cage et al., 2017) among autistic adults. While correlation does not equate with causality, it is also notable here that the contrasting practice of ‘autism acceptance’ – which refers to accepting autism as an intrinsic and valuable part of the individual, and therefore adjusting environments and expectation accordingly – is not associated with trauma. In fact, as an alternative to trying to treat autism, autism acceptance has recently been found to help increase wellbeing in both autistic individuals (Cage et al., 2017) and family members (Da Paz et al., 2018).
There is not yet sufficient evidence to conclude that ABA is necessarily harmful as such.
Chapman, R., & Bovell, V. (2022). Neurodiversity, advocacy, anti-therapy. In Handbook of autism and pervasive developmental disorder: Assessment, diagnosis, and treatment (pp. 1519-1536). Cham: Springer International Publishing.
However, some autistic self-advocates have criticised attempts to distinguish between
“good” and “bad” kinds of ABA, arguing that all applications express the same underlying attitudes to normalisation (Asasumasu, 2017) or because of issues in the conceptual foundations of behaviourist principles (Sparrow, 2018). It is also notable that, at the time of writing, research just published in the Journal of Applied Behaviour Analysis still classifies autistic stims including as hand flapping as “problem behaviours” (Frank-Crawford et al., 2020). The multiple testimonies of those for whom the experience of ABA has been extremely negative therefore need to be taken very seriously by the ABA community. The evidence of damage cited previously (Cassidy et al., 2019; Kupferstein, 2018)) – not to mention the benefits associated with autism acceptance – all point to the need to engage with self-advocates about the features of receiving ABA that they find particularly distressing. While the Kupferstein sample is non-random, this does not undermine the existence of the distress also attested to by multiple autistics who have experienced ABA first-hand.
Henny Kupferstein 