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/

Does ABA harm Autistic People?

By Shona Davison;

Shona is an Autistic mum to two autistic children. She is Studying for an MA in autism at Sheffield Hallam University. Interested in educating others about autism.

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

Applied behaviour analysis (ABA) is a behavioural therapy which has the goal of changing observable measurable behaviour, usually by manipulating antecedents or using reinforcement (usually positive reinforcement as negative is less commonly used now). Data is used to see how the rate of behaviour changes from these manipulations.

Manipulating environments and consequences in order to influence behaviour perhaps sounds harmless and similar to how many people parent? I do not believe it is harmless though – ABA has a murky history, which I discuss below.

There is not one universal definition of ABA, some therapists use the term more loosely than others and in the US some therapies are given the name ABA in order to access insurance funding. This article may therefore not be referring to your ABA. Some ABA providers have the problematic goal of making autistic people ‘indistinguishable’ from their non-autistic peers. If the provider you are considering using has that goal then this article most likely is referring to your ABA.

Many autistic people speak up against ABA but our smaller numbers and pathologized identities mean our voices often go unheard or ignored. Advocating against ABA can elicit a barrage of criticism – even against those who have first-hand experience and are describing their own personal trauma.

I see the popularity of ABA as a symptom of various factors: society does not accept difference; does not understand autistic behaviour or how to support autistic people; and does not trust the autistic person to be able learn without ABA. How has ABA come to exist? The more powerful party (non-autistic people – they have numbers on their side) make judgements about the behaviour of members of the marginalised group (autistic people). They do not like or understand what they see, and decide they need to change it, rather than accommodate it. This does not usually come from a bad place. Often the kindest, most caring people believe the way to help us, is to help us become more ‘normal’. This is what happens when one takes a medical model approach to autism – when one considers autistic people to be broken, disordered or ill. Many of us do have medical problems, but that is not the same as autism being medical.

It is possible to change behaviour using ABA, there is no question of this – though not as effectively as some would have you believe (see Dawson, 2004; Hassiotis et al., 2018, Hughes, 2008). But this is beside the point. We ought to be considering whether we should change the behaviour – which is often harmless and often useful. Quite often the main beneficiary is not the autistic person, it is the people around them.

Dr. Ivar Lovaas considered the goal of ABA to make autistic people ‘indistinguishable from their peers’. This aim puts all the responsibility for change on autistic people. Autistic people try so hard to get by in this world and often that means we compromise ourselves to ‘fit in’ with non-autistics. We force ourselves to do things that hurt us or make us uncomfortable, which partially explains the high rates of mental health problems and suicide in our community. Despite all this effort, we often still stand out as different and so still get judged and criticised. This aim of ‘indistinguishable’ still gets cited by ABA providers. While society strives for this goal – the goal of making us ‘normal’ – our human rights will be violated. Aiming for ‘normal’ is unethical, often unachievable and many first-hand accounts suggest it comes at too high a cost to the autistic person.

Critical thinking

Critical thinking is essential when evaluating any potential therapy for autistic individuals and sadly this is not a skill most people possess. When considering the pros and cons of ABA please ask yourself the following questions:

1. Does the individual who is advocating for or against ABA have any financial or professional incentive to do so?
– Have they been paid to do it?
– Is their career or professional status dependent on them convincing people of the benefits or problems associated with a particular therapy?
– Are they are selling ABA or an alternative to it?

2. Does the author have an emotional reason for advocating for or against ABA?
– Parents who love their children and may have spent a small fortune and given up many hours of their time to support their child using ABA are not going to want to hear that they are inadvertently causing harm. There is a strong emotional motivation to ignore or to discredit anyone who says that they are.
– Practitioners who have chosen careers in good faith because they want to help autistic children, will not want to accept that they are doing the opposite.

3. Be aware of cognitive bias.
– It is much easier to convince somebody of a lie, than to convince them that they have been lied to.
– We tend to believe what we come across first. This is often support for ABA, unsurprisingly, given the size of the marketing budgets behind it’s promotion and the power imbalance between those who advocate for it (often non-autistic people, perhaps parents or practitioners) and those who advocate against it (often autistic people, some of whom have been recipients of ABA).

Bear these factors in mind when considering how much weight to give to an individual’s views. I’m not suggesting people who work in the autism industry (and I do consider it an industry) are automatically untrustworthy – after all building a career out of your passion is something most of us would love to do. I am simply stating that scepticism is your friend when reading anything related to autism.

For the purposes of full disclosure and to aid your critical thinking, I will tell you a bit about me: I am an autistic parent to autistic children. I am in the final module of an MA in autism. I do not get paid for any autism work – I currently give up my limited time for free because I am passionate about helping other autistic people. My view is that ABA hurts autistic people. It is only because autistic people are a marginalised minority group who struggle to be heard, that most people do not seem to grasp this. It strips autistic people of dignity, violates our human rights and is evidence of how so many of the non-autistic population believe that autistic people want to be like them. Most of us just want to be happy. It is hard to be happy when the relentless narrative is that you are broken and need fixing. If I had the option of not being autistic, I would not take it – nor would I take it for my children. That does not mean life is easy for me, it means I like myself and my children the way we are.

History of ABA

ABA has always been controversial. In the 70s it was used to ‘cure’ children who were at risk of developing ‘adult sexual abnormalities’ (i.e. gay or transgender). One study had as its goal to extinguish female ‘sex-typed’ behaviours from a young boy called Kraig (Rekers and Lovaas, 1974). He was subjected to three times weekly treatments of ABA, where his mother was trained to ignore ‘feminine behaviour’ and give him attention for ‘masculine behaviour’. Signs of his distress were described as ‘tantrums’ and the boy ‘putting pressure’ on his mother for her attention. Doll play was relatively easy to extinguish but ‘feminine gestures’ (e.g. limp wrist, hip swaying) remained until ‘spankings’ were introduced. The whole paper is littered with language that shows contempt for the boy: ‘flirtations’, ‘screechy’, ‘brat behaviour’. The language used says so much more about the adults observing and judging the behaviour than it does about Kraig, who was only four years old when treatment started. Reading it 40 years after it was written, I am filled with disgust. I hope and believe that society will look at ABA for autistic people with the same abhorrence in 40 years time.

What about more recent evidence for the use of ABA with autistic children? If I do a search for ‘ABA evidence autism’ and pick a random journal article (Smith and Iadarola, 2015) I find the behaviour of autistic people described as ‘tantrums’ and ‘aggression’. The likelihood of being autistic is termed ‘risk’. Many behaviours that I would consider logical and adaptive given individual sensory experiences are described as ‘symptoms’ e.g. extreme food selectivity. The paper refers to parental and caregiver stress multiple times but not once does it mention the autistic child’s stress. A child who is ‘aggressive’ or has ‘tantrums’ is likely a stressed child. Why do so many people fail to see that? Why do autistic people always get the blame for challenging interactions? Why are we trying to change autistic people and their behaviour rather than changing their environment to reduce their stress? Very often behaviour of parents, teachers and caregivers are a major source of stress for the child and are therefore one of the causes of the ‘challenging behaviour’. We should call all behaviour that challenges someone else ‘challenging behaviour’ rather than just reserving that term for the least powerful party (the autistic person). I am writing this from experience – I know what it is like to parent and teach autistic people as well as to be autistic.

Whilst ABA has changed and evolved over the years it does not hurt to remember where it came from. Here are a couple of quotes from Ivar Lovaas, the ’father of ABA’.

“You see you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person. (Lovaas cited by Chance, 1974, p76)”

When you consider that Lovaas appeared to believe autistic people are not fully human, it is easier to understand his unethical approach to ‘treating’ us. Electric shocks were one of a number of ‘aversives’ used on autistic children. Electric shocks are still used on autistic people in one well known facility, the Judge Rotenberg Centre and are condoned by the Behaviour Analysis Certification Board (BACB) and the Association for Behaviour Analysis International (ABAI). Here is a description of ABA being used on an autistic child called Pamela. It is an extract from the article ‘Screams, Slaps and Love’ in Life magazine (1965):

The most drastic innovation in Lovaas’ technique is punishment — instantly, immutably dished out to break down the habits of madness. His rarely used last resort is the shock room. At one point Pamela had been making progress, learning to read a little, speak a few words sensibly. But then she came to a blank wall, drifting off during lessons into her wild expressions and gesticulations. Scoldings and stern shakings did nothing. Like many autistic children, Pamela simply did not have enough anxiety to be frightened.
To give her something to be anxious about, she was taken to the shock room, where the floor is laced with metallic strips. Two electrodes were put on her bare back, and her shoes removed.

When she resumed her habit of staring at her hand, Lovaas sent a mild jolt of current through the floor into her bare feet. It was harmless but uncomfortable. With instinctive cunning, Pamela sought to mollify Lovaas with hugs. But he insisted she go on with her reading lesson. She read for a while, then lapsed into a screaming fit. Lovaas; yelling “No!”, turned on the current. Pamela jumped — learned a new respect for “No.”

Lots of things come to mind when I read that extract. It is quite clear that the author has difficulty empathising with the autistic child. There is no attempt to understand the reason for the behaviours and motivations are assumed which are almost certainly inaccurate. Why are ‘wild expressions and gesticulations’ a problem? Who are they hurting? I do not believe that Pamela did not have enough anxiety to be frightened. As an extremely anxious autistic person, I know that I express anxiety in ways that many non-autistic people would fail to recognise. Few people can tell when I am anxious, unless it becomes a full-blown panic attack. From my autistic perspective, I would guess that Pamela stares at her hand because she enjoys it. It is most likely a positive sensory experience – no one should have the right to stop her if she is not hurting anybody. And to stop her by electrocuting her, then describing her as ‘cunning’ for wanting a hug when she is upset? Despite, or perhaps, because of this repugnant treatment and disregard for ethics, the therapist gets proclaimed as innovative and pioneering.

Changing behaviour using behavioural techniques is not particularly difficult. Perhaps we should be asking: ‘should we change the behaviour?’; ‘who will benefit from changing this behaviour?’; and ‘are we changing behaviour without addressing an underlying root cause?’.

Evidence based?

There are critiques of the evidence for ABA available online so I will not go into detail here (see Dawson, 2004) but I will comment that when I read research the most obvious thing that researchers so frequently fail to get right are the outcome measures. Interventions get judged by non-autistic standards of ‘success’. If you can speak, have a job, have lots of friends and variety of interests but you are not happy, how is that a successful outcome? Not everybody wants friends or a lot of hobbies! My passions are few but they are very strong, make me happy and help counter-balance stressful elements of my life. If a non-autistic person assessed my life, they may well disapprove or worry about plenty, but that is because humans find it difficult to empathise with people who are different to them. As non-autistic people are the majority, I am fairly well versed in non-autistic ways and I find many elements bizarre. I do not judge non-autistic people for incessant small talk, asking questions when they are not interested in the answer and hugging to say ‘hello’. I accept non-autistic people as they are and would not dream of suggesting they need therapy to be more like me. So why do we have academic papers written by respected researchers where they are judging an intervention by whether it makes the person behave more like a non-autistic person? I find it so difficult to read these papers – to me it is so apparent that they are missing the point. We should be aiming for happy autistic people not autistic people who can pass for ‘normal’. Whilst this basic concept is not understood, time and money will continue to be wasted on research that does not help autistic people but further stigmatises and hurts us.

Another problem with most research is that it does not look at long term outcomes. What is the point in proving that an intervention meets a short term (flawed) goal when we have no idea of the long-term consequences? There is certainly plenty of anecdotal evidence that ABA has long term negative consequences (see further information) and we are even starting to see academic research (Kupferstein, 2018) though we need much more. As we are disadvantaged in education and employment and there is still stigma and risk of discrimination, there are still not as many openly autistic researchers as I would like to see. Autistic people do not usually have budgets for research, or staff devoted to marketing and PR, unlike ABA providers, so our stories may not be as well promoted. Also, there are still people who believe that being autistic means we are unable to advocate for ourselves or others.

Autistic voice

Historically, the voice of autistic people has been stifled. Simon Baron-Cohen wrote in his book Mindblindness (1999) that theory of mind (the ability to put oneself metaphorically in another person’s shoes – an ability he theorised that autistic people lack) is ‘one of the quintessential abilities that makes us human’. The implication, of course, that autistic people are not fully human. Frith and Happé (1999) claimed that our lack of theory of mind weakens our awareness of self. If autistic people are perceived to be lacking self-awareness or not to be fully human then our accounts will be undervalued. Here are some examples that demonstrate how still today some see us as less than human:

1. The person first or identity first debate – why do so many non-autistic people advocate for person first language saying we need to remind everybody we are people first and foremost?

2. Here is an article in Psychology Today where we are described as ‘undomesticated humans’ – the author Christopher Badcock believes this is preferable to being described as aliens (another dehumanising term). We are even compared to Siberian foxes.

3. Ian McClure a psychiatrist who is influential in the treatment of autistic people (he chaired the SIGN 145 guidance and was an external reviewer for the NICE guidance), spoke at a national conference where he described autistic people as ‘not quite right’, ‘causing havoc’ and ‘emotionally stuck at the level of a 2 year old’. He suggested that ‘two human species came together’ and we ended up with ‘a genetic mess’. Click here for the transcript of a 10 minute edited version.

There is still a long way to go before autistic people are afforded equal rights and respect. It is hard being autistic and constantly having to defend yourself against these views which often come from autism professionals – the very people who are supposed to be serving us.
Recent research suggests that autistic adults should be considered experts on matters relating to autism (Gillespie-Lynch, Kapp, Brooks, Pickens and Schwartzman, 2017) so I recommend that parents seek to connect with them in order to understand their child and how to support them.

Conclusion

If you are considering ABA for your child please research widely on the topic, including views from autistic people. Remember to be critical of everything you learn on the topic. You can only come to a balanced view if you take the time to do this.

There is too much anecdotal evidence saying that ABA harms autistic people to just brush it under the carpet. There is also some academic evidence that ABA causes harm. Hopefully the growing number of autistic academics will mean that more research will be done in this area – improving quality of life is a common theme in the research that autistic people tend to prefer, contrary to where the funding goes (research on genes and finding causes).

Most people can see how unethical it is to use ABA to teach gay people to behave like straight people. Why then is it still deemed acceptable for autistic people? I have never heard a good answer to the question.
Anxiety, depression, post traumatic stress disorder and other mental health problems are not an inevitable part of being autistic. They can be avoided and I believe the best way is with love and acceptance. A stressful childhood is not conducive to good mental health and wellbeing.

Trust that understanding and accepting developmental difference does not mean that your child will not progress.
As Beardon (2017) states:

“Autism + Environment = Outcome”

One can’t change the autism, so in order to improve the outcome, one needs to focus on changing the environment.
Every autistic person deserves to be loved and respected for being their authentic autistic self.

Further information

Relationship between trauma and ABA – anecdotal evidence
An open letter to families considering intensive behavioural therapy for their child with autism by Virgynia King and Bob King.

Part 1:
http://www.astraeasweb.net/politics/aba.html
Part 2:
http://www.astraeasweb.net/politics/aba2.html

The truth about ABA:
http://autismmythbusters.com/parents/therapy/the-truth-about-aba/

Relationship between trauma and ABA – research evidence

Evidence of increased PTSD symptoms in autistics exposed to applied behaviour analysis. Kupferstein, (2018)

https://www.researchgate.net/publication/322239353_Evidence_of_increased_PTSD_symptoms_in_autistics_exposed_to_applied_behavior_analysis

First-hand accounts of ABA

My thoughts on ABA – Amy Sequenzia:
https://autismwomensnetwork.org/my-thoughts-on-aba/

Are there any adult autistics who are willing to share their personal experience of ABA therapy?
https://www.reddit.com/r/autism/comments/50bhcd/are_there_any_adult_autistics_who_are_willing_to/?st=isida1k8&sh=4b2e6577

Quiet hands by Julia Bascombe:
https://juststimming.wordpress.com/2011/10/05/quiet-hands/

References

Baron-Cohen, S. (1995). Mindblindness: An essay on autism and theory of mind. Cambridge, Mass: MIT Press.

Beardon, L. (2017). How can unhappy autistic children be supported? Retrieved from https://blogs.shu.ac.uk/autism/2017/07/03/presentation-by-luke-beardon/

Chance, P. (1974). “After you hit a child, you can’t just get up and leave him;
you are hooked to that kid”. O. Ivar Lovaas Interview With Paul Chance. Retrieved from: http://neurodiversity.com/library_chance_1974.html

Dawson, M. (2004). The misbehaviour of behaviourists. Retrieved from http://www.sentex.net/~nexus23/naa_aba.html

FRITH, U. and HAPPÉ, F. (1999). Theory of Mind and Self‐Consciousness: What Is It Like to Be Autistic? Mind & language, 14 (1), 82-89.

Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose expertise is it? evidence for autistic adults as critical autism experts. Frontiers in Psychology, 810.3389/fpsyg.2017.00438

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.

Hughes, M-L. (2008). ABA – Giving Science a Bad Name? Retrieved from: https://thepsychologist.bps.org.uk/volume-21/edition-5/letters

Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behaviour analysis. Advances in autism, 4(1), 19-29.

Rekers, G. A., & Lovaas, O. I. Behavioral treatment of deviant sex-role behaviors in a male child. Journal of Applied Behavior Analysis, 1974, 7, 173-190.

Smith, T., & Iadarola, S. (2015). Evidence Base Update for Autism Spectrum Disorder. Journal of Clinical Child & Adolescent Psychology, 44(6), 897-922.

What’s in your bag? A Conference Survival Pack;

Lydia Wilkins is a trainee journalist and Blogger. She blogs to document her Asperger’s Syndrome. Her hero is Harold Evans (investigative journalist). Her special interest is the poetry of Sylvia Plath.  Lydia’s blog can be found at Mademoisellewomen.com

 

 

 

What’s in my bag for conference day?

 

My name is Lydia Wilkins; I am eighteen, and I have Aspergers Syndrome. I document this over on my blog at mademoisellewomen.com.

 

One of the things that I find hardest is to adapt to situations-be it social (when I was at school), or getting a train from A to B. Usually this takes a lot of planning-I talk my route through with someone, write instructions out, check train websites in case of strikes.

 

But I also think that being prepared with what you bring along with you can be a big help. For that reason, I am going to show you what’s in my bag for conference day. (Sadly I can’t come as I live too far away, and I have the exam that day. However, this is what I take with me to any other event in my capacity as a trainee journalist and as an individual with Aspergers.

 

The bag:

This is the bag I keep for ‘best’-to be smart, I guess. It’s from New Look, and you can buy it here.

The idea of the bag is to carry all I need for the day, but also to be comfortable-so not too weighted, and not to go against my sensory needs. (Some material I cannot stand the feel of.)

 

What’s inside?

 

A Picture of the contents of the Author's bag.
This is what’s inside my bag!

Short answer: a lot. There’s a lot of stuff-some things are essential, but some are for me to adapt to my surroundings:

Essentials for travelling:

 

When travelling, I usually make a list of what to pack first, as not to miss out what is essential. In my bag you can see my purse (in blue); this has money for food, if there’s an emergency, etc. Towards the front you can see my ‘travelling essentials’; tickets, a card holder (for railcard, said tickets, and my press cards), and underneath is the instructions for travel. I also take a phone charger with me in case of emergency. Oh, and my door key.

 

For the conference:

 

I have a notebook with me (although I do take it with me wherever I go.) The notebook with books on the front is acting as my jotter-so, if there’s anything important, like a guest speaker or lecture, I can take notes. It’s also an important tool for networking. I also have a collection of pens. So I don’t run out, and I have a variety to suit me-a Bic makes my handwriting neater, but a pencil is for doodling. I also take a perfume bottle (albeit tiny) with me; there are also a variety of lip products. This is to be a little bit more professional by blending into, and adapting to, my surroundings. There’s also the post-its for quick jottings.

 

For me being on Spectrum:

 

A lot of what is in my bag derives directly to me being on spectrum, and the need to adapt to new surroundings:

 

Planner: This is my moleskin daily planner (hardcover, large). It keeps track of all my appointments. As well as this, it also notes when my blog posts are going live, when members of my family are away, what time to get trains, etc. Without it, I would be lost.

 

Dr Paw Paw: Can you see the pink peach tube to the left  (bottom) of the photo? This is a multi-purpose balm, and is one of the few products that meets my sensory needs. It can sculpt hair, as a blush, as hand cream, for dry skin.

 

Headphones: Noise is overwhelming. Plugged into my phone, this blocks this out. And it’s useful for on the train.

 

What is in your bag?