PBS & ABA research —campaign edition (Part 1)
In recognition of Neurodiverse Connection’s new campaign AGAINST PBS & ABA, Ann Memmott explores related research papers and existing resources. With some reflections of her own, Ann shares a grounding in the subjects of PBS & ABA and outlines some concerns about the approaches and evidence base.
This research roundup takes a different format to the usual ones. The research papers included are are not an exhaustive list, but serve to share an insight into Positive Behaviour Support (PBS) and Applied Behaviour Analysis (ABA). The papers include thoughts and experiences from various Neurodivergent advocates, and include suggestions from PBS leaders about how the industry might do better.
Positive Behaviour Support: An overview and links to Applied Behaviour Analysis
Positive Behaviour Support (PBS) emerged in the 1980s and is used extensively within mental health settings in the UK. According to the paper by Brown, Andersen and De Pry (2015), it claims to be,
…grounded in the …science of Applied Behaviour Analysis (ABA). ABA claims to be evidence-based and ‘gold standard’ in its achievements. PBS is usually reliant on the “four part model…setting events, antecedent stimuli, target behaviours and maintaining consequences…provides the theoretical backbone for the design of individualised PBS plans.
Likewise, the Challenging Behaviour Foundation states that, “The approach is based on psychological theory, using processes of Applied Behaviour Analysis”, and a paper by Gore and team (2022), makes numerous references to the foundation of ABA in PBS practices.
Fernández-Mateos and team set out an extensive history of the links between ABA and PBS, and lists some of the current challenges. There is a general assertion with the PBS industries that PBS does not use punishments. However, a common practice in many PBS plans involves only giving access to a ‘preferred item or activity’ if a person complies with ‘expected’ behaviour. Autistic people have a very strong need to regulate using their preferred items and hobbies. Lung and team (2024), for example, discuss the importance of focused interests and much needed items, for autistic people. As the PBS teams have rarely undertaken needed research into whether there are adverse effects from such approaches, any harms may have gone unnoticed thus far. The ‘expected’ behaviour is very often achieved by removing the natural behaviour of e.g Autistic people; such normalisation-enforcement has its own risks and some of these are discussed later in this roundup. More research, and training, is needed.
The paper by Gore and team (2022) states that PBS is not meant for Neurodivergent individuals who do not have a learning disability. Clearly, however, it is indeed being used on such individuals in our mental health wards and wider settings. Of concern is their further observation that, “…there has not really been a robust evaluation of a PBS framework in a UK setting to date.” This is some 40 years after PBS arrived as an intervention, for an industry that claims to be evidence-based.
Fernández-Mateos and team also note that PBS and ABA groups often do not understand what the other group does, states that PBS has unclear training requirements, and observe that the National Institute for Health & Clinical Excellence (NICE) believes incorrectly that PBS is not ABA based.
The NHS often requires PBS teams to have ABA qualifications, according to many of the job advertisements. An online search of NHS jobs yields many examples of PBS team workers being asked for e.g. BCBA or UKBA qualifications, both being forms of ABA qualifications. A recent advertisement for a PBS Practitioner in CAMHS stated “Relevant qualifications such as MSc Applied Behaviour Analysis/ Positive Behaviour Support are essential”. Furthermore, the reading lists of current MSc qualifications in PBS often endorse ABA-related content.
It seems from the above that the two disciplines of PBS and ABA are not easily separately, therefore, and the procedures from ABA may not be as free of punishment as is believed. It is also clear that the ‘evidence base’ is lacking, and we’ll discuss more of this in the papers ahead.
Brown, F., Anderson, J., & De Pry, R. L. (2015). Individual positive behavior supports: A standards-based guide to practices in school and community settings. Paul H Brookes Publishing, Baltimore
Fernández-Mateos, J. M., Conlon, N. J., Murray, C. M., & Healy, O. (2022). A review of the historical and current relationship between positive behaviour support and applied behaviour analysis: impact and future directions. European Journal of Behavior Analysis, 23(2), 215–233. https://doi.org/10.1080/15021149.2022.2146884
Gore, N. J., Sapiets, S. J., Denne, L. D., Hastings, R. P., Toogood, S., MacDonald, A., ... & Williams, D. (2022). Positive behavioural support in the UK: a state of the nation report. International Journal of Positive Behavioural Support, 12(1), i-46. https://www.ingentaconnect.com/contentone/bild/ijpbs/2022/00000012/a00101s1/art00001
Lung, S. L. M., Picard, È., Soulières, I., & Bertone, A. (2024). Identifying the functions of restricted and repetitive behaviours and interests in Autism: A scoping review. Research in Autism Spectrum Disorders, 117, 102458. https://www.sciencedirect.com/science/article/pii/S1750946724001338
Is Applied Behaviour Analysis, which underlies PBS, effective and safe?
Anderson examined the accounts of seven Autistic individuals who had experienced ABA. They remembered traumatic events from the ABA, refuted its general aim to normalise Autistic people, regarded ABA as unethical, and recommended deep listening to Autistic people.
Kupferstein noted reports of Post Traumatic Stress symptoms in nearly half of the cohort responding to a research survey about this. Such a finding raises concerns about the experiences of Autistic people, and suggests that far more research needs to happen before this can be deemed a safe and effective intervention.
McGill & team likewise asked ten Autistic people about their experiences of ABA, finding that most recollections were being e.g. ‘trained like an animal to perform’, ‘physically restrained, kept from using the toilet’, ‘trained to be nonautistic’, ‘it gave me PTSD (Post Traumatic Stress Disorder)’, ‘the focus on compliance made it harder for me to say no to people who hurt me later’ and a reliance on spoken (‘mouth’) words rather than wider communication methods, leaving them functionally voiceless. They recommend a much better focus on short and long term follow-up and much better involvement of autistic people in ABA. They also recommend further research involving larger groups.
The Cochrane report (Reichow & team, 2018) on early intervention included ABA, and found little evidence of it achieving any of its stated aims. Such a high-quality Systematic Review is to be taken seriously, in my view.
The paper by Pukki and team (2022) also consider this Cochrane Review, along with other evidence of behaviourism having problematic outcomes and foundations. They note, for example, that many research teams in behaviourism have ‘conflicts of interest’ that need to be declared on their papers, but only 6% have been found to do so. It calls into question whether bias could be influencing much of the alleged ‘gold standard’ evidence used to underpin major contracts.
The ABA industry also focuses on stopping Autistic stimming, (sometimes termed stereotypy, defined as the repeated movement or sounds that can help to regulate Autistic individuals and which are widely regarded as positive by Autistic communities). Whilst claiming to only focus on reducing ‘harmful’ stimming, very recent ABA research papers show this is not the case, for example a dissertation titled ‘An Investigation Into the Efficacy of Self-Monitoring and Mixed Schedules for Reducing Stereotypy in Children With Autism’ and the paper by Slanzi and team (2024). A common argument by ABA proponents is that it is vital to stop ‘minor’ stims such as finger posturing or tapping a desk, because those will escalate into harmful stims over time, stop the children learning, or stop them having meaningful friendships. There is no clear supporting evidence for these assertions. A paper by Leaf and team (2022) relies solely on a previous paper by Guess & Carr from 1991, to allegedly prove that minor stims escalate into major difficulties. If there has been no good evidence in the last 30+ years, this may be its own clue.
Anderson LK. Autistic experiences of applied behavior analysis. Autism. 2023 Apr;27(3):737-750. doi: 10.1177/13623613221118216 . Epub 2022 Aug 23. PMID: 35999706. https://pubmed.ncbi.nlm.nih.gov/35999706/
Kupferstein, D. (2018). Evidence of increased PTSD symptoms in Autistic individuals exposed to ABA. Advances in Autism, 4(1), 19–29. https://www.emerald.com/insight/content/doi/10.1108/aia-08-2017-0016/full/html
Leaf, J. B., Cihon, J. H., Javed, A., Klick, S., Ferguson, J. L., Milne, C., ... & McEachin, J. (2022). A call for discussion on stereotypic behavior. European Journal of Behavior Analysis, 23(2), 156-180.
McGill, O. and Robinson, A. (2021), "“Recalling hidden harms”: autistic experiences of childhood applied behavioural analysis (ABA)", Advances in Autism, Vol. 7 No. 4, pp. 269-282. https://doi.org/10.1108/AIA-04-2020-0025
Pukki, H., Bettin, J., Grey Outlaw, A., …..& Yoon, W. (2022). Autistic perspectives on the future of clinical autism research. Autism in Adulthood, 4(1), 1-12. https://doi.org/10.1089/aut.2022.0017
Reichow B, Hume K, Barton EE, Boyd BA (2018). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2018;5(5):CD009260. https://www.cochrane.org/CD009260/BEHAV_early-intensive-behavioral-intervention-eibi-increasing-functional-behaviors-and-skills-young
Slanzi, C.M., Morris, S.L., Conine, D.E. et al. Respecting Behavioral Diversity and Prioritizing Inclusion: Surveying Behavior Analysts’ Intervention Strategies. Behav. Soc. Iss. (2024). https://doi.org/10.1007/s42822-024-00191-4
Psychiatric inpatient wards - current situations of concern.
Clearly there is a desperate need to improve outcomes on mental health wards and other settings involving Autistic and other Neurodivergent people.
One notes that despite the use of PBS, with it’s laudable aims, psychiatric inpatient wards are seemingly unable to make progress with reducing the number of inpatients, some of whom have been ‘stuck in the system’ for many years. The NHS monthly statistics website shows the current situation as well as backdated statistics reports.
The current Lampard Enquiry is examining the tragic deaths of over 2000 individuals who received inpatient mental health care in just one county, between the years 2000 and 2023, many of whom were Autistic or had a learning disability. The services use PBS, and appear to have done so for at least the last few years of this time period, as shown in their CQC Inspection Summary. We do not yet know whether use of PBS, for example, increased the incidence of deaths. Such a subject is beyond this research review, but seems an important question to be answered as part of the Inquiry findings.
There are further stark findings in the work to uncover sexual abuse on mental health wards, for example summarised by the charity Rape Crisis England & Wales in their piece on the ‘Alarming scale of sexual violence and abuse on mental health wards’ and in an investigative podcast by Sky News and The Independent ‘Mental health patients “raped and sexually assaulted” in NHS care as “national scandal” revealed’ and which includes many Autistic individuals.
Again, it is beyond this research review to consider whether staff and managers trained on PBS are doing their utmost to protect mental health patients from harm whilst in their care. Nor is it clear whether the PBS industry reflects on whether ‘behaviour’ towards staff may sometimes be trauma-related, in connection with sexual assaults on the wards. This is work that needs to be done, in my view, and would be an important point to consider when taking a broader look at whether PBS and its current training and ethos encourages safe and respectful cultures.
What is PBS supposed to do?
Bild is a leading organisation in the world of PBS. The organisation has written their general position on ‘What does good PBS look like?’ which which suggests that PBS upholds human rights, has trauma-informed approaches, enables inclusive communication, focuses on rapport-building, and understands sensory issues. Bild also suggests that the concerns around PBS evolve from organisations calling their approach PBS, but not actually using PBS and provide a further example of what to look for in a ‘good’ PBS service. It mentions improving quality of life and indicates that inclusion in the community is an aim, but does not reflect on whether that is indeed an aim of the individual. It further proposes that restrictions placed on an individual are ‘reviewed’ in order to ‘reduce’ them, but does not aim to eliminate these. It also claims that ‘functional assessment’ (FA), an ABA principle, will tell them why a person behaves in a particular way. Such an FA process is usually reliant on observing and guessing, from a standardised list of expected reasons for a behaviour, instead of asking the person or exploring wider possibilities such as delayed processing, or the cause being the PBS/ABA staff and the techniques being used on people. There is an emphasis on independence and on teaching skills, which, though plausible as aims, may not consider the aims or achievable skills of the person involved: autonomy may be preferable for them, rather than independence.
