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)
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.