Statement regarding the ‘Oliver McGowan Mandatory Learning Disability and Autism training’

This article was written collaboratively by Julian Morgan and Kat Williams

To start, Autistic UK would like to add a grateful acknowledgement of ALL those of us who have been pushing, campaigning and demanding formal learning disability and autism training to be nationally available. The announcement made today that all health and social care staff in England will receive mandatory autism training is the outcome we were all rooting and campaigning for, and is – on the surface – a huge step in the right direction.

But as ever, the execution from the NHS and Government never fails to disappoint.

Though medics may not be required to take the Hippocratic Oath, the statement “first do no harm” should still apply. The Oath was replaced by the General Medical Council’s (GMC) “duties as a doctor,” which many universities use as part of their medical graduation ceremonies as a ‘pledge’ to uphold, and all doctors must adhere to.

Now the Autistic community in England (not the UK as headlines suggest) finds out the ONLY autism related organisation that will be implementing ‘Oliver McGowan Mandatory Learning Disability and Autism training for all health and social care staff’, as announced, is one which has a history of exploiting those Autistics who contributed to its past online training packages. It’s also rather short of paid Autistic employees too; unpaid ‘volunteers’ and ambassadors it has in multitude. Other contributors include learning disability charities – all of which are parent focused or led – and this news has sparked a high level of concern within the Autistic community.

The “duties as a doctor” states that medics should “Never abuse your patients’ trust in you or the public’s trust in the profession.” Handing a training contract over to a parent-focused charity with such an atrocious history of death and neglect in their own care homes has deftly broken that trust in one fell swoop.

Medics must “Listen to, and respond to, their concerns and preferences,” yet they refuse to listen to the Autistic community who, for years, have been telling them that training should be directed and delivered by Actually Autistic people who have lived experience. The NHS employs lived experience advisers in many areas, yet autism seems to be a category in which “mother knows best.”

One of our Directors – who also sits on the NHSE Advisory group on Learning Disability and Autism – was promised that the NHS-wide training on autism and Autistic people would be co-produced and developed by lived experience advocates. Were they actually listening, or just saying things they thought we would like to mollify us?

They promised that what we referred to as ‘The Usual Suspects’ would not be their go-to choice for autism as they were heavily biased in their experience towards learning disabilities, and had no real experience of Autistic people other than ‘as learning disabled’ and were wedded to the medical model of care.

‘NO!’ they said, ‘Local implementation! Lived experience all through. Not all learning disability charities doing it…’

Despite promises to stop the standard practice of treating Autistic people as learning disabled, we now have a selection of learning disability service organisations telling medics and care staff what Autistic people need, without any meaningful Autistic consultation or input. We asked for separate, independent, Autistic advocates and organisations to be included in designing the bid and training, yet the infantilising of Autistic people (especially those with learning disabilities) means that it is presumed we are unable to know what we need and desire, let alone deliver this training ourselves. Of course, our betters know better than we do about what Autistics want.

The NHS has broken its pledge that ‘lived experience advisors will be used in all decision making and implementation processes in all areas.

What happened to Nothing About Us Without Us?

The chances of Autistic people who do not “toe the line” with the service provider in question contributing to this massively important work, has basically slipped to zero. Thanks NHS and Government. Notice how Autistics do not even make the headline on this official announcement from a national provider to the Care Industry?

The GMC’s duties of a doctor also states that they must “Work with colleagues in the ways that best serve patients’ interests.” We’re going to go a little off the path with this one, but realistically colleagues does not solely include other doctors. This includes the trainers, the administrators, the managers etc. Working with trainers who have demonstrated that they do not serve Autistic patients’ interests, yet again, goes against this ethical guidance.

Medics must also “Protect and promote the health of patients and the public.” They cannot protect the health of Autistic patients while simultaneously working with an organisation which has actively harmed Autistics, particularly as they then attempted to cover up said harm. Do they think we have forgotten Mendip House? Forgotten the cover up? This is especially pertinent as the NHS and Government’s working relationship involves them teaching medics and care staff how to better care for a portion of society they harm.

How do you feel about an organisation that still sends schoolchildren to secure units and ATUs telling care staff how to look after autistic children and adults?

An organisation that uses and promotes ABA and PBS for all? (If you don’t know why that’s a bad thing, please read this article written by Kat Williams on her site)

Have you forgotten the whistle-blower(s) and the denials of responsibility?

Do they think we have forgotten the abuse?

Does their track-record demonstrate that they’re up of this job? That further deaths will be prevented?

This is the organisation that will now train others to care for YOUR loved ones. A fine example of vanity and hubris above and beyond the call.

This organisation veils itself using the Social Model of Disability in its public image, yet follows the Medical Model of Disability behind closed doors. The thought of an organisation that treats the Autistic community as an income stream is not representative of that community. Its unwillingness to advance the Autistic cause through meaningful coproduction (rather than public-facing tokenism) is chilling. This is an organisation that practices ABA (as are the others which are involved). This organisation incarcerates children and abuses its charges. The NHS has already had ABA/PBS snuck through the back door through the Transforming Care Programme, and this new contract will see systems that Autistics have been campaigning to reform move back into behaviour-led thinking led by organisations whose training will be coloured by their own negative opinions.

The GMC code also states that medics must “Take prompt action if [they] think that patient safety, dignity or comfort is being compromised.”

Therefore, to the NHS and Government, we invite you to take prompt action now. Your Autistic patients’ safety, dignity and comfort are all being compromised with this union.

“You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions…” Can you justify this?

Feel free to express your opinion to the National Autistic Society, Mark Radford at Health Education England, NHS England, and Minister for Care Helen Whately.

A critique of the use of Applied Behavioural Analysis (ABA)

Posted with permission from Dr. Damian Milton, originally written as the Appendix for the Labour Party Autism / Neurodiversity Manifesto Steering Group, 2018

Content Warning: this article discusses depictions of torture and abuse.

“…right from the start, from the time someone came up with the word
‘autism’, the condition has been judged from the outside, by its appearances,
and not from the inside according to how it is experienced.” (Williams, 1996:
14).

This report looks into the commonplace implementation of Applied
Behaviour Analysis (ABA) and Positive Behavioural Support (PBS), criticisms of
these approaches, and why they are not usually supported by neurodivergent
communities, before concluding with some recommendations for future practices.

ABA can be defined as the application of techniques based upon the
philosophy of radical behaviourism (pioneered by B.F. Skinner and others). ABA
seeks to utilise these theories of learning in order to alter behaviour.
Contemporary theory and practice, despite moving beyond the ‘methodological
behaviourism’ that prioritised behaviour modification, to the use of
‘functional assessments’ of the ‘antecedents, behaviour, and consequences’ of
behaviour within a context (or ABC method), still primarily focuses on reducing
behaviour deemed ‘aberrant’ or ‘inappropriate’ and increasing behaviour deemed
socially ‘valid’ and ‘acceptable’. By following the principles of radical
behaviourism, thoughts and emotions are treated as behaviours operating in the
same ways as observable actions (Research Autism, 2018). Such a philosophy is
criticised by other schools of Psychology or Philosophy of Mind (Stanford
Encyclopedia of Philosophy, 2015). Proponents of ABA suggest that it is a
‘natural science’ of behaviour, rather than a ‘social science’ dependent on
hypothetical constructs.

“Behaviour Analysts are not distracted by the many different theories of
the causes of autism.” (childautism.org.uk, 2018).

Critics would suggest that rather than being an objective natural
science however, it rather uses a flawed set of conceptual concepts at the
expense of excluded concepts that have developed through other disciplines and
perspectives. Despite being a general theory and practice, it is often
incorrectly assumed to be a specific intervention used with autistic people (by
both some proponents and critics). The history of ABA is not without
significant controversy outside of working with autistic people though. One of
the pioneers of using ABA to make autistic people ‘indistinguishable from their
peers’ was Ivar Lovaas who also utilised the method as a form of ‘conversion
therapy’ for transgender children:

“Rekers and Lovaas conducted the treatment in response to the parents’
concerns not the child’s. Furthermore, they challenged all four of the reasons
Rekers and Lovaas stated for going forward with the treatment, including the
need to relieve the boy’s suffering, the idea that the “problems” would
continue into adulthood, that an early intervention may be the only treatment
that worked, and that “the parents were becoming alarmed.”” (Wilhite, 2015).

These remarks are eerily familiar with regard to the reasons given as to
why ABA is often administered upon neurodivergent people. In the UK, a somewhat
less extreme version of ABA has taken shape in the form of Positive Behaviour
Support (PBS):
“Another way to decide what to teach a child with autism is to understand
typical child development. We should ask what key developmental skills the
child has already developed, and what they need to learn next. The statutory
curriculum in the countries of the UK also tells us what children should learn.
Then there are pivotal behaviours that would help further development: teaching
communication, social skills, daily living or academic skills that can support
longer-term independence and choices.” (Hastings, 2013).

Despite contemporary behaviourist theorists such as Hastings (2013) who
favour PBS claiming to use a non-normalising social model approach, it is clear
from the above passage that a normative approach to child development and
education is being utilised. Such a view can be contrasted with autistic and
wider neurodivergent and disabled activist accounts regarding behavioural
intervention. A recent multicentre, cluster randomised controlled trial
conducted by Hassiotis et al. (2018) however found no ‘treatment effects’ in
terms of reductions in ‘challenging behaviour’ between those being cared for by
staff trained in PBS compared to those who were not, and that further research should:
“…endeavour to identify other interventions that can reduce challenging
behaviour.” (Hassiotis et al., 2018:1).

According to the UK Society of Behaviour Analysts, the use of ABA should
be based on a number of values, including a focus on the ‘individual’ and on
‘skill acquisition’. “Behaviour analysts ensure that the goals, methods, and
outcomes of any intervention are important, understandable, and acceptable to
the person whose behaviour is being changed, as well as to those who care about
the person (e.g., parents, carers, teachers).” (UK-SBA, 2018).

Given that ABA is practised upon young children and less verbally
articulate autistic people, coupled with the lack of understanding often found
in non-autistic people’s interpretations of autistic ways of being and actions
(Milton, 2012, Chown, 2014, Heasman and Gillespie, 2017, Sasson and Morrison,
2017), these values cannot be ensured. The ethical decisions as to what
behaviour is to be addressed and why is left to carers and professional
advisors. It is also notable that the behaviour often deemed in need of change
by professionals for ‘social validation’ are not as important, understandable
and acceptable to the autistic person expected to perform and comply.
Similar issues would also be pertinent with all neurodivergent identities.
“Any decisions made about how behaviour will be assessed or changed are
sensitive to the individual circumstances of the person and are aimed at
improving quality of life.”
(UK-SBA, 2018).

Yet, when quality of life is defined in normative terms and without the
input of neurodivergent people, or even deliberately not addressing critique,
it can only too quickly become ableist oppression. Behaviour analysts suggest
that ‘skill acquisition’ should be seen as primary goal of intervention. This
places the pressure on the neurodivergent person to conform to society, whilst
not making the same effort in return (Milton, 2014, 2017) “…to address quality
of life issues by improving skills that can remove barriers to learning and facilitate
independence and best practice utilises methods based on ABA…” (Keenan et al.
2014: 167).

The narrative presented by some leading advocates of ABA see autism and
other neurodevelopmental ‘conditions’ as barriers to learning, and ABA as a way
of facilitating independence and improving skills, and that this will all lead
to a better quality of life. This statement is however highly normative, and
unsympathetic to a social model of disability. Criticisms of ABA are often
misrepresented by ABA proponents as a caricature, without attempting to engage
fully with those criticisms. This is particularly relevant when such practices
are implemented on potentially vulnerable people.
“One expects lobby groups to give vent to fixed and emotionally charged views,
but one expects more from scientists. Tolerance of scrutiny, acceptance of
criticism, and objectivity in experimental approach and the interpretation of
outcomes are expected. A discipline that makes extravagant claims of its
methods, overstates its scientific status and has difficulty agreeing on
definition of its terms will struggle to achieve scientific credibility.”
(Hughes, 2008).

For many neurodivergent activists, the normalisation agenda inherent in
such approaches is not a caricature, but a felt experience of living in what is
perceived to be an inherently ableist society. Who gets to define what is
‘appropriate’, ‘challenging’, ‘disordered’, and ‘socially important’, is always
imbued with unequal power relations (Mason, 2005). A denial of the directly
felt harm of those that have had such methods implemented on them is often met
with increased anger and frustration from members of the neurodivergent
communities, as well as some parents (for examples see: realsocialskills, 2018,
Omum2, 2018, Dalmayne, 2018), yet despite this, activists have attempted to
explain what their contentions are, even making distinctions between differing
experiences of ABA (Unstrangemind, 2018). The impasse between these
perspectives is not just over the ideological purpose that a method is set to,
but also the processes of ABA-based practices.

Although Milton (2016) found that interventions akin to PBS were popular
amongst parents, this was contrasted with the views of autistic people.
Tensions between these views are likely to persist, but a greater understanding
of the reasoning behind why differing stakeholders are attracted to differing
ideologies and practices can help all to build a common language in which to
debate the issues. Such a way forward is being held back by those with a
dogmatic adherence to ABA however, and a focus purely on the reduction of
so-called ‘challenging behaviours’.

“…the whole ABA movement appears increasingly more like a cult than a
science: there is a charismatic leader, a doctrine, a failure to engage with
criticisms, inquisition and denunciation of any who criticise (however mildly),
misrepresentation of critics, and proselytising exercises to gain more converts
and spread the word.” (Jordan, 2001, cited Fitzpatrick, 2009: 141).

A study by Remington et al. (2007, cited Fitzpatrick, 2009) compared
those who had home-based ABA to those who did not, over a two-year period.
Using measures of intelligence, language use, daily living skills, and a
statistical measure of ‘best outcomes’, the majority made no significant
advances. Magiati, Charman and Howlin (2007) found no significant differences
in a range of outcome measures either, although large differences were found
regarding outcomes within both control and experimental groups. Hogsbro (2011,
cited in Milton, 2016) found that on average, ABA provision had a negative
impact on a number of standardised measures. Yet, the parents of children on
such programmes were found to hold the highest expectations for their
children’s educational progression, and professionals and parents using this
model subjectively rated improvements higher than all other groups. Similar
findings were also found by Kupferstein (2018).

“I had virtually no socially-shared nor consciously, intentionally
expressed, personhood beyond this performance of a non-autistic ‘normality’
with which I had neither comprehension, connection, nor identification. This
disconnected constructed facade was accepted by the world around me when my
true and connected self was not. Each spoonful of its acceptance was a shovel
full of dirt on the coffin in which my real self was being buried alive…”
(Williams, 1996: 243).

In this quote, the late Donna Williams (1996) suggests that by learning
by rote how to act as a nonautistic person can produce a ‘masking’ effect and
be detrimental to long-term well-being and mental health. Williams (1996)
directly criticised the use of behavioural techniques such as ABA for only
working on function and appearance, and for their lack of fit with autistic
perceptions. For Williams, such techniques:
“…may feel like a senseless ritual of abuse, regardless of its ‘good’
intentions.” (Williams, 1996: 51).

Kupferstein’s (2018) recent study regarding the potential links between
ABA, post-traumatic stress disorder (PTSD) and autistic people found that
respondents across all ages who were exposed to ABA were 86% more likely to
meet the PTSD criteria than respondents who had not been exposed to ABA
practices.

Major issues with the ABA theory and practice:

– What behaviours are reinforced and deemed as functional and of social
importance and relevance is chosen by an outsider
– ‘Reinforcements’ may be inappropriately given (e.g. the bombardment of
emotionally laden praise, and hugging, and punishments being potentially
internalised as rewards such as timeouts)
– Rote learning can lead to training people to behave as if their problems do
not exist, or lead to ‘autopilot’ responses
– The claim that ABA will suit everybody as an applied method – it clearly does
not
– The focus on behaviour at the detriment of subjective understanding and
cognition
– Often focuses on compliance and founded on normative assumptions
– Reduces opportunity for natural curiosity and exploration
– Utilises ‘reinforcements’ that are often extrinsic rather than intrinsic
motivations for activities
– The lack of generalising of newly learnt ‘skills’
– Sometimes punishment is endorsed as a ‘last resort’
– The intensity of programs (often suggested that one works on ABA programs for
forty hours a week).

Instead, it is recommended here that practices should:

– Take a holistic and person-centred approach which therefore takes into
account neurodivergent sensibilities, sensory perceptual differences,
subjective accounts, cognitive theory, and a social model of disability
– Building understanding and communication between all involved
– Enabling environments to be more accessible
– Reducing direct confrontation
– Ethical considerations must be built in to every step of the process of
acquiring professional competencies
– Use of dangerous restraint methods and forced seclusion should be seen as
disciplinary offences
– Rather than focusing on perceived weaknesses and absent skills, utilise
strengths and interests
– Neurodivergent perspectives must be built in to every step of the process of
acquiring professional competencies
– Building local expertise and communities of practice, drawing upon
multi-disciplinary expertise, but places the neurodivergent person at the
centre of considerations.

Although similar criticisms can be made of other normative interventions
that are administered upon neurodivergent people, few have as poor a track
record in terms of participation as ABA and PBS. Although individual practice
by parents and indeed professionals may not seek normalisation in the use of
ABA, the flaws in its theory and implementation mean that we should be looking
beyond its scope. Therefore the endorsement of PBS by the Care Quality
Commission, alongside the widespread use in schools and mental health services
needs urgent review. As a way forward, it is suggested here that the
person-centred and socially sensitive approaches being developed by groups such
as Studio3 and AT-Autism are promising and that these need to be tested with
high quality research.

References
Child Autism UK (2018). ABA and autism. Accessed online at: https://www.childautism.org.uk/aboutautism/applied-behaviour-analysis-aba-and-autism/
Chown, N. (2014). More on the ontological status of autism and the double empathy problem. Disability and Society. Vol. 29(10): 1672-1676.
Dalmayne, E. (2018). Applied Behavioural Analysis: First-Hand Accounts, Accessed online at: http://www.autismdailynewscast.com/applied-behavioural-analysis-first-handaccounts/27715/emmadalmayne/3/
Fitzpatrick, M. (2009). Defeating Autism: A Damaging Delusion. London: Routledge.
Hassiotis, A., Poppe, M., Strydom, A., Vickerstaff, V., Hall, I. S., Crabtree, J., and Cooper, V. (2018). Clinical outcomes of staff training in positive behaviour support to reduce challenging behaviour in adults with intellectual disability: cluster randomised controlled trial. The British Journal of Psychiatry, 1-8.
Hastings, R. (2013). Behavioural method is not an attempt to ‘cure’ autism, Accessed online at: https://theconversation.com/behavioural-method-is-not-an-attempt-to-cure-autism-19782
Heasman, B., & Gillespie, A. (2017). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members. Autism, published online July 2017: http://journals.sagepub.com/doi/abs/10.1177/1362361317708287#articleCitationDownloadContainer
Hughes, M-L. (2008). ABA – Giving Science a Bad Name? Accessed online at: https://thepsychologist.bps.org.uk/volume-21/edition-5/letters
Keenan, M., Dillenberger, K., Rottgers, H., Dounavi, K., Jonsdottir, L., Moderato, P., Schenk, J., VireusOrtega, J., Roll-Pettersson, L. and Martin, N. (2014). Autism and ABA: The Gulf Between North America and Europe, Review Journal of Autism and Developmental Disorders. Vol. 2(2): 167-183.
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis, Advances in Autism, Vol. 4(1): 19-29.
Magiati, I., Charman, T. and Howlin, P. (2007). ‘A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders’, Journal of Child Psychology and Psychiatry. Vol. 48 (8): 803-812.
Mason, M. (2005). Incurably Human. Nottingham: Inclusive Solutions.
Milton, D. (2012). On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and Society. Vol. 27(6): 883-887.
Milton, D. (2014). So what exactly are autism interventions intervening with? Good Autism Practice, Vol. 15(2): 6-14.
Milton, D. (2016). Educational discourse and the autistic student: a study using Q-sort methodology [doctoral thesis]. Birmingham: University of Birmingham.
Milton, D. (2017). Challenging the ideology of idealised normalcy. in: Milton, D. and Martin, N. eds. Autism and Intellectual Disabilities in Adults, Vol. 2. Hove, UK: Pavilion Press.
Omum2 (2018). ABA and Autism – the thorny problem of control and consent, Accessed online at: http://smallbutkindamighty.com/2015/06/16/aba-and-autism-the-thorny-problem-of-control-andconsent/?utm_content=buffer71bf8&utm_medium=social&utm_source=twitter.com&utm_campaign
Realsocialskills (2018). ABA therapy is not like typical parenting, Accessed online at: http://realsocialskills.org/post/120453082402/aba-therapy-is-not-like-typical-parenting
Research Autism (2018). Applied Behavioural Analysis, Accessed online at: http://www.researchautism.net/autism-interventions/types/behavioural-anddevelopmental/behavioural/applied-behaviour-analysis-and-autism
Sasson, N. J., and Morrison, K. E. (2017). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism, published online November 17th, 2017: http://journals.sagepub.com/doi/abs/10.1177/1362361317729526
Stanford Encyclopedia of Philosophy (2015). Behaviorism. Accessed online at: https://plato.stanford.edu/entries/behaviorism/
Unstrange Mind (2018). ABA, Accessed online at: https://unstrangemind.wordpress.com/2014/10/07/aba/
UK Society of Behaviour Analysts (2018). Behaviour Analysis. Accessed online at: http://uksba.org/behaviour-analysis/
Wilhite, C. (2015). Trangender people and behavior analysis’ dark past. Accessed online at: http://www.bsci21.org/transgender-people-and-behavior-analysis-dark-past/
Williams, D. (1996). Autism: An Inside-Out Approach. London: Jessica Kingsley.

Original publication can be found on https://neurodiversitymanifesto.com/