Drama in the courtroom: Defending the rights of children diagnosed with autism

  1. Abstract

 

Children diagnosed with autism have the right to access evidence-based practices that are necessary for their education and welfare. Oftentimes, parents of these children are not satisfied with the education provided by the State and they challenge education or health authorities in tribunals. Usually, these tribunal hearings revolve around the inclusion/exclusion of the science called Applied Behaviour Analysis (ABA) in directing evidence-based practice. Given that the number of these tribunals is rising, this paper addresses why it is important for judges and lawyers to be informed correctly about (1) the nature of ABA, (2) the reasons why parents petition for evidence-based practices to be grounded in ABA, (3) why education and health authorities petition against ABA, and (4) the combined influences of these issues on decision making.

Keywords: tribunal, autism, applied behaviour analysis (ABA), misinformation, evidence-based practice, parents

Autism Spectrum Disorder (ASD) is a diagnostic term defined in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association DSM-5 (APA, 2013) and the International Classification of Diseases (ICD-10; WHO, 1992). The diagnostic criteria specify that autism is diagnosed when “persistent deficits” are observed with regards to social interaction and communication across multiple contexts and at least two different restricted, repetitive behaviour, interest or activities are manifest. The DSM-5 further specifies that “symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life); symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning; these disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.”

Three levels of severity are specified for each diagnostic criterion depending on the amount of support necessary:

  • Level 3 “Requiring very substantial support”
  • Level 2 “Requiring substantial support”
  • Level 1 “Requiring support”

Co-occurring conditions, including intellectual disabilities, epilepsy, or mental health problems are diagnosed in approx. 50-75% of children with autism (Close, Lee, Kaufmann, & Zimmerman, 2012).

Given the criteria for the diagnosis, it follows that many individuals diagnosed with autism experience difficulties with basic skills, including social and life skills. About 50% of children diagnosed with autism elope repeatedly, and, because they tend to be attracted to water, 91% of all eloping-related deaths are caused by drowning (Golden, Tipton, & Scott, 1997). Given the different levels of support needs identified in the diagnosis, children with an autism diagnosis require appropriate levels of supervision, health care, and education supports (Jordan, 2011). Depending on their child’s needs, 38–45% of parents/caregivers give up employment, which can lead to stress, financial hardship, social exclusion, and parental mental health issues (Keenan et al., 2007).

The prevalence of autism diagnosis has risen dramatically. Recent figures indicate that at least 2% of children in the USA are on the autism spectrum (CDC, 2015). In the UK, 3.5% of children are thought to be on the autism spectrum (Dillenburger et al., 2015). Associated economic costs are estimated to be at least £3.1 billion per year in the UK; that is more than heart disease, stroke and cancer combined (Buescher, Cidav, Knapp, & Mandell, 2014). Families of children on the autism spectrum face three times the cost for child care, while earning 28% less than other families. Therefore, parental mental health is a serious concern that is related to unemployment and financial hardship and challenging child behaviour (Dillenburger, McKerr, & Jordan, 2015).

Over the years, there have been thousands of Special Educational Needs and Disability (SEND) tribunals where parents of children with disabilities have appealed against local authority decisions regarding their child’s special educational needs (Kids First, 2013). Many of these cases involve parents arguing for Applied Behaviour Analysis (ABA)-based interventions for their children (Byrne & Byrne, 2005; WalesOnline, 2005). Judges, barristers, and lawyers have important decisions to make that rely on advice from education and healthcare professionals. Unsurprisingly, statements usually differ substantially between witnesses for and against the case with the result that the environment can become very hostile and acrimonious. In this paper, we will first outline the rights of the child for evidence-based interventions. Then, we will briefly outline characteristics of ABA and why parents petition for ABA-based interventions. Following this, we describe how education and health authorities argue against ABA. The goal is to summarise how the diverging views within the courtroom drama of a tribunal cascade into a decision-making process is hampered by inaccuracies and misinformation about a science.

The rights of the child for evidence-based interventions

The United Nation Convention for the Rights of the Child states that all children, including children with a disability have “the right to live a full and decent life with dignity and, as far as possible, independence and to play an active part in the community” (UNCRC, 1990). The question is, what does it take to ensure that children with autism are enabled to fulfil these aspirations? What can governments do to support them?

In the UK, government policy relies on the National Institute for Clinical Excellence (NICE) to review the research literature and identify evidence-based interventions for various populations. The NICE Guideline NG170 (NICE, 2013) focusses specifically for the “management of children diagnosed with autism”. NG170 recommends a range of interventions aimed at the core features of autism (i.e., interventions that improve social and communication outcomes and ameliorate negative impacts of repetitive, stereotyped or rigid behaviour or sensory sensitivities) or that target behaviour that challenge and other coexisting conditions. NICE concluded that early supports are important as they will “result in improvements in the social communication development of the child” (NICE, 2013, p. 202). Clearly, when these improvements are maintained, a child has a better chance to live a “full and decent” life as outlined in the UN Convention, and with improved independence is enabled to play a more active part in the community (UNCRC, 1990). However, in their review of interventions, NICE (2013) found that the most widely used programmes in educational settings have “not been well evaluated” (p. 202). Consequently, the NICE review acknowledged that parents seek additional educational programmes for their children “designed to teach new skills, to minimise the negative consequences of impairments and to assist in the generalisation of learning. These programmes are not routinely delivered within the NHS or social care services, and, when publicly funded, are usually supported from education budgets” (p. 202).

NICE acknowledged that “[s]ome of these targeted interventions are known as ABA interventions, although strictly, ABA is an applied science rather than a single intervention approach for autism or any other condition. In practice, the extent to which educational interventions are described as “ABA” depends on the style of record keeping used for teaching and measuring progress, the extent to which teaching strategies are formalised and structured, the terminology used to define these strategies (such as prompting and reinforcement) and the professional background of the person overseeing the intervention” (NICE, 2013, p. 203). In addition, the NICE (2015) review of evidence-based practices in the management of challenging behaviour and learning disability recommends personalised interventions that “are based on behavioural principles and a functional assessment of behaviour” (1.7.5). NICE clearly acknowledged, then, that behaviour analysts should be part of the multidisciplinary team (NICE, 2015, 1.1.5).

Other large-scale reviews of evidence-based interventions for children and young people with autism concur with NICE, noting that there is sufficient evidence in favour of around thirty evidence-based interventions, all but one or two of which are based explicitly on ABA (NAC, 2015; Steinbrenner et al., 2020).

What is ABA?

Applied Behaviour Analysis (ABA) is the applied branch of the science of Behaviour Analysis. The Association for Professional Behavior Analysts (APBA, 2020) characterises ABA in the following way:

“Behavior analysis is a natural science with concepts, research methods, and principles (natural laws of behavior) that distinguish it from the social sciences. The applied branch of the discipline – ABA – originated as a blend of the experimental analysis of behavior and information about human development. From the beginning, ABA incorporated naturalistic as well as structured intervention techniques implemented in a variety of everyday settings. Abundant scientific research documents the effectiveness of a large array of ABA procedures for building useful skills and reducing problem behaviors in people with and without specific diagnoses.” (p. 4)

Searching for natural laws of behaviour (sometimes also called principles of behaviour) is similar to the practices of other natural sciences, such as physics or biology, insofar as their aims are to uncover the natural laws within the purview of their subject matter. In other words, the search for natural laws is the raison d’etre of every natural science and when these laws are identified, an applied discipline such as ABA harnesses them in the design of interventions tailored to meet the needs of an individual.

It is important to note that the term “behaviour” within the science of Behaviour Analysis differs significantly from the way the term is used in everyday language. In Behaviour Analysis, the term behaviour is defined holistically as all interactions of the person with their environment, including publicly observable physical actions, as well as private behaviours such as thoughts (cognitions) and feelings (emotions) (Johnson, 2013). The “underlying causes” or motivations of behaviour at any instance are sought in the learning history of the individual and in their interactions with their present social and physical environment (Cooper, Heron, & Heward, 2020). This approach differs markedly from conventional psychology or education, where behaviour, cognition, and emotion are viewed as separate entities. All too often, however, when psychologists and educationalists talk about their views on ABA in court, they confuse their own rather narrow definition of behaviour with the holistic definition of behaviour used in ABA (Phelps, 2007).

During the social interactions that define ABA-based interventions, the behaviour analyst is always mindful of the role of behaviour principles in the outcome of the intervention. With this awareness comes ethical responsibilities for ensuring that scientific practices are of the highest standards. Applied behaviour analysis uses the knowledge gained in the basic experimental science to enhance socially relevant and culturally valued skills and quality of life enhancing behaviour (Baer, Wolf, & Risley, 1968), including family relationships, social life, education, health, employment, leisure activities, and relaxation (Cooper et al., 2020). Challenging behaviour that constitute barriers to learning and fulfilment are targeted (i.e., given focused attention) through functional assessment and functional analysis (Iwata, Dorsey, Slifer, Bauman, & Richman, 1994).

Behavioural targets are selected in close collaboration with the individual on the autism spectrum and their families (Michie, Atkins, & West, 2014). The goals, therefore, include the same aspirations most people have for themselves, their young children, and their loved ones more generally. The key issue is that without ABA-based supports, these goals would remain out of reach of these individuals and their families (Steinbrenner et al., 2020). In ABA, the agreed target behaviour is very clearly defined in a way that ensures everyone involved knows exactly whether or not the behaviour has occurred. Vaguely defined words that may be used in lay vocabulary are replaced by objectively defined terms in a manner appropriate to the precision demanded by a natural science. For example, terms used in the “Index for Inclusion” (CSIE, 2016), such as “valuing all students and staff equally” or “increasing the participation of students in, and reducing their exclusion from, the cultures, curricula and communities of local schools” are replaced with particulars of the component behaviours that make up the skills sets to achieve these goals (Dillenburger & Coyle, 2019).

In ABA-based interventions, the actual process involves sensitivity to the needs of the individual, thorough monitoring of progress, and measurement of social validity of the outcomes achieved. When data show that progress is not as expected, carefully planned bespoke changes are made to the intervention. Figure 1 shows the basic strategy used in the scientific method that guides this process.

 

In sum, ABA-based interventions are based on the scientific method and designed collaboratively to the highest ethical standards. The relevant ethical imperatives are enshrined in international guidelines provided by the Behavior Analysts Certification Board (BACB, 2014). In the UK, the Society for Behaviour Analysis has developed guidelines for ethical practice as well as a voluntary register of behaviour analysts (NB; this voluntary register is in the process of gaining Professional Standards Authority (PSA) approval) (UK-SBA, 2020).

 Why parents petition for ABA-based interventions

Parents of children on the autism spectrum who petition for ABA-based interventions usually have experience with a range of interventions that have failed to be effective for their children (Dillenburger, Keenan, Doherty, Byrne, & Gallagher, 2012). Once their child started in an ABA-based programme, parents were able to see that significant progress was made, at times very quickly (Keenan, Kerr, & Dillenburger, 2000; PEAT, 1997). Parents usually employ ABA-home tutors, supervised by Board Certified Behaviour Analysts (BACB, 2020), to develop and deliver bespoke ABA-based programmes tailored specifically to their child’s learning needs and environments.

Parents also seek parent training in ABA (PEAT, 1997). In fact, there is evidence that at times parents have become much more knowledgeable about ABA than education and health professionals (Dillenburger, Keenan, Doherty, Byrne, & Gallagher, 2010). These parents value data collection as the best indicator of the quality of teaching, while ensuring that learning is fun for their child (Dillenburger et al., 2012). Kauffman (1997) clarifies the importance of this point:

“The teacher who cannot or will not pinpoint and measure the relevant behaviors of the students he or she is teaching is probably not going to be very effective… Not to define precisely and to measure these behavioral excesses and deficiencies, then, is a fundamental error; it is akin to the malpractice of a nurse who decides not to measure vital signs (heart rate, respiration rate, temperature, and blood pressure), perhaps arguing that he or she is too busy, that subjective estimates of vital signs are quite adequate, that vital signs are only superficial estimates of the patient’s health, or that vital signs do not signify the nature of the underlying pathology. The teaching profession is dedicated to the task of changing behaviour – changing behavior demonstrably for the better. What can one say, then, of educational practice that does not include precise definition and reliable measurement of the behavioural change induced by the teacher’s methodology? It is indefensible.” (p. 514)

Good data allow for quick analysis of the learning that is expected to take place in the classroom. When the data show that desired learning is not taking place, this means that the teaching is failing to help the child attain the desired learning and therefore the teaching techniques should be changed without delay (Baer, 2004). Unfortunately, all too often parents experience a mismatch between the extent of progress made by their child in home-based ABA programmes and the lack of similar levels of progress in general or special education settings. Usually, it is when parents try to address this issue with the schools that they encounter hostility toward ABA. Not only that, but they find the schools are not interested in learning more about ABA or in embracing the data parents and home tutors have collected. Without proper understanding of ABA and the importance of data collection, myths about science-based education begin to surface (Fennell & Dillenburger, 2018); more on this later.

These experiences stand in stark contrast to the USA, where all 50 States have legislation to ensure that ABA-based interventions are paid for, either through state funding or medical insurance. Interventions based on ABA are highly valued for their effectiveness in mitigating some of the challenges and for developing adaptive and social behaviours. Outcome studies show that children who benefitted from individually tailored ABA-based interventions achieve milder autism severity and lower levels of support needs, higher adaptive functioning, and higher cognitive skills (Eldevik, Titlestad, Aarlie, & Tønnesen, 2019). In fact, there is clear evidence that due to plasticity of the brain of babies, very early intervention can have beneficial effects on behavioural and brain developmental trajectories (Bolte et al., 2015; Dawson, 2008). While Early Intensive Behavioural Intervention (EIBI) is particularly effective when applied early in a child’s life (Tanner & Dounavi, 2020), ABA-based interventions have been shown to be effective during later childhood, adolescence and adulthood, with improvements in social and communication skills leading to greater independence and a reduction in disruptive behaviour (Foxx, 2008). There is evidence that gains achieved in early childhood are maintained into adolescence and adulthood (Smith, Hayward, Gale, Eikeseth, & Klintwall, 2019).

Twenty years ago, the US Surgeon General (1999) concluded: “Thirty years [now 50 years] of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior” (p. 164); for an overview of scientific support for ABA, see Kennedy Krieger Institute (2019b) at Johns Hopkins University School of Medicine. Based on available evidence, many scientific, professional and government organisations support the use of ABA-based interventions. These include The American Association on Intellectual and Developmental Disabilities, American Academy of Child and Adolescent Psychiatry, Organization For Autism Research, National Autism Centre’s National Standards Report, The National Professional Development Centre on Autism Spectrum Disorders, Centres for Disease Control, National Institute of Mental Health (NIMH), National Institute of Child Health and Human Development, Surgeon General of the United States, California Senate Select Committee on Autism and Related Disorders, New York State Department of Health, Maine Administrators of Services for Children with Disabilities, California Department of Education (Kennedy Krieger Institute, 2019a).

The Australian Government Department of Social Services recommends ABA-based interventions as the only interventions considered eligible for funding “based on established research evidence” (Prior & Roberts, 2012, p. 12). A review by USA and British paediatricians published in the Lancet noted:

“The most well researched treatment programmes are based on principles of applied behaviour analysis. Treatments based on such principles represent a wide range of early intervention strategies for children with autism.” (Levy, Mandell, & Schultz, 2009, p. 1627)

Parents are aware of this information and some report that while the schools their children attend are filled with well-meaning professionals, in actual fact they oftentimes provide “merely a sophisticated baby-sitting service”. Many parents feel that all too often educational plans are poorly constructed and that there is antagonism towards parents who want a more ambitious, scientific approach to managing the education and welfare of their children (Lamb, 2010). The ensuing atmosphere can become toxic as parents find that some schools refuse to countenance the possibility that ABA professionals could liaise with teachers at the school to ensure continuity with successful home programmes. Increasingly, parents see only one way to address these issues and end up in tribunals because their attempts to work collaboratively with either education or health authorities have been thwarted. These are lengthy processes and the time scale between raising the issues initially with the school and ending up in a tribunal can take years (Byrne & Byrne, 2005).

Why education and health authorities petition against ABA

There are a number of reasons why local education and health authorities argue against ABA-based education to be provided (Heward, 2003). One of the main reasons is lack of knowledge in ABA by teachers and other school personnel. A survey of 165 special school teachers showed that only approx. 35% of these teachers self-reported their knowledge of ABA as “good/very good”. However, when checked against their actual knowledge of ABA, severe discrepancies were identified between self-reported knowledge and actual knowledge. In fact, the group of teachers claiming to have very good/good knowledge fared very poorly in most of the basic test items. This discrepancy between self-perceived and actual expertise, also called the Dunning-Kruger effect (Dunning, 2011; Schlösser, Dunning, Johnson, & Kruger, 2013), is captured nicely by the title “Unskilled and unaware of it: How difficulties in recognizing one’s own incompetence lead to inflated self-assessments” (Kruger & Dunning, 1999).

Generally, lack of knowledge is best addressed through education and training. International standards of training in ABA require behaviour analysts to undertake verified university-based postgraduate (at least Masters-level) training that covers an extensive competency-based task list with at least 315 taught classroom hours and 2000 supervised practice hours delivered by Board Certified Behaviour Analysts (BCBA) (BACB, 2020). A number of these verified Masters courses are offered at UK universities (EABA, 2020; UK-SBA, 2020).

Education and health staff generally lack training in ABA. These personnel will have received initial qualifying training in their respective professions, however, for education and health care staff this generally does not cover autism or ABA (Dillenburger et al., 2014). Even when these professionals attend in-service training (e.g., DENI, 2015), there are questions about the quantity and the quality of this training. A study of 798 education and health staff, found that, while most of the staff had received no in-service training in autism at all, those who did commonly received merely an 1-2 hour autism awareness session (Dillenburger, McKerr, Jordan, & Keenan, 2016). The same applies to staff who received in-service “training in ABA”, where at best short basic introductions to ABA are offered (DENI, 2015). Given that in-service training generally is delivered by colleagues, who themselves gained their knowledge during similar in-service training, the circle closes and it is no surprise that the training creates the Dunning-Kruger effect described earlier. The cumulation of these circumstances has led to the propagation of a range of myths and misconceptions about ABA (Heward, 2003; Morris, 2009). Judges and lawyers working with SEND tribunal cases are likely to hear the following statements:

 

  1. “ABA is one of many interventions, approaches, or models for children with autism.”

The perception of ABA as only one of many interventions, approaches, or models for children with autism has been perpetuated widely (Prizant, Wetherby, Rubin, & Laurent, 2003). This may be due to the lack of clarity in the language used by some educators as well as some behaviour analysts. However, it is important to note, as mentioned earlier, that ABA is not one intervention or one approach or model. In fact, none of the A’s in ABA stand for autism. ABA is the applied part of the science of behaviour analysis; the other two parts of the science are the “Experimental Analysis of Behaviour” and “The philosophy of Behaviour” (Chiesa, 1984).

ABA is not a model any more than Medical Science is a model, or Chemistry is a model. Professionals trained in ABA are trained scientists who specialise in conceptual and practical applications of behavioural principles. The rush to adopt manualised models in preference to acquiring skills in a science that has more published support than the models is a measure of the extent of the damage done through misinformation about ABA. Essentially, this statement is saying “We are not interested in science, just give us a manual to follow”. The danger of this approach is that it encourages a focus on following procedures within the manual instead of encouraging a focus on how to analyse behaviour and remain focused on the outcomes of applying principles of behaviour.

The reason for the perpetuation of the misnomer of ABA as being simply one intervention, one model, or one approach, may stem from the fact that one specific ABA-based intervention (i.e., Discrete Trial Teaching, DTT) is often used initially in an ABA-based programme, usually in conjunction with Natural Environment Training (NET) (Luce, Green, & Maurice, 1996). DTT was publicised by Ivaar Lovaas in the 1970s and 80s (Lovaas, 1987), but it has been used before that and is still used as a basic building block of some intensive early interventions. However, DTT and NET are only two of many ABA-based interventions that have been used successfully to support children with autism (other procedures include precision teaching, pivotal response training, picture exchange systems, positive behaviour support practices, shaping, chaining, antecedent procedures, parent-training, telehealth, stimulus-stimulus pairing, verbal behaviour, to name but a few; see Dillenburger, 2011; Steinbrenner et al., 2020). Staff who have attended short courses focussed on the delivery of one or two of these procedures are not trained in ABA to the same extent as those who are trained to international Masters level standards and, therefore, will be unable to make this discrimination. Using off-the-shelf ABA “techniques” without understanding the science from within which they are developed causes many problems in the delivery of quality education with adequate intervention fidelity.

Once people have grasped the idea that ABA is not one single intervention, method, or approach, they turn the argument around and may say, “We don’t want ABA because ABA is not autism specific”. However, good science can be applied to many areas (e.g., biology is applied to many medical, horticultural, or oceanic issues; chemistry is applied to many pharmacological, industrial, or domestic issues). Behaviour analysis is applied to many educational, psychological, therapeutic, organisational issues, autism being one of them (Cambridge Centre for Behavioural Studies, n.d.). Thus, good science should not be ridiculed for being widely applicable. In fact, when ABA is used to support people on the autism spectrum, it is clearly “autism specific”.

Intriguingly, some of the educational institutions that criticise what they conceive ABA to be, specifically promote single models such as TEACCH (Schopler, Mesibov, & Hearsey, 1995) or SCERTS (Prizant et al., 2003). In other words, they are oblivious to the fact that they are not embracing a holistic science-based framework because they have been seduced by the promises of a single model, often without much in the way of evidence to support its use.

 

  1. “ABA uses physical punishment and aversives.”

In order to propagate this myth, historical cases from the 1960s are cited (Kirkham, 2017; Milton, 2012). For an appropriate assessment of these claims it is important to remember that physical punishment of children was wide-spread in the 1960s. Physical punishment in schools was outlawed in the UK only as late as 1986; the ban was extended to private schools only in 1998. Physical punishment by parents is still not outlawed in the UK, although it is banned in many other European countries. Of course, none of this makes it right to use aversives or physical punishment on children in any circumstance (then or now), but the question remains as to why ABA is singled out for criticism, when the same critique would apply historically to teachers and other educationalists. In fact, some of the most commonly used programmes favoured by schools instead of ABA promoted the use aversives in the past (e.g., TEACCH; Schopler, Mesibov, & Hearsey, 1995). The use of aversives and physical punishment plays no part of contemporary ABA-programmes (Cipani, 2004; Dillenburger & Keenan, 1995).

 

  1. “ABA causes post-traumatic stress disorder (PTSD).”

The idea that ABA causes post-traumatic stress disorder (PTSD) stems from one online survey that was circulated amongst social media groups (Kupferstein, 2018). The survey included 217 respondents who were caregivers of children with autism and 243 respondents who were adults (18-73 years of age). The adult respondents identified themselves as autistic, with or without a clinical diagnosis of autism; their average age at the time of their autism identification was over 25 years of age. The survey included questions about post-traumatic stress symptoms (PTSS); it did not ask for an independently verified confirmation of a diagnosis of PTSD. The survey also did not define ABA-based interventions, apart from stating that these were “early interventions”.

In addition, no actual numbers are reported in the paper, just the percentage of respondents. A quick calculation illustrates a problem. Given that the non-completion rate of the survey was high (only 50% of adult respondents and 61% of caregivers answered all of the survey questions), this means that only about 120 adults with autism and about 130 caregivers completed the survey fully. Of the adult respondents, 11% are reported to have experienced ABA-based interventions, which means that only 11 or 12 adult respondents had experienced some kind of ABA-based interventions.

As mentioned above, though, there are inconsistencies because ABA-based interventions purportedly were experienced in early childhood, but autism was not diagnosed until these adults were over 25 years of age. It is very unlikely that someone would have been given early ABA-based autism interventions unless they were diagnosed with autism at an early age. In any case, of the adult respondents who said that they had experienced ABA-based interventions, 62% reported some PTS symptoms. In other words, this appears to apply to a total of 6 or 7 adult respondents to the survey, clearly not enough to draw definitive causative conclusions about a whole population or a science.

Apart from drawing on very low numbers and unconfirmed diagnoses, there is no mention in the paper of any additional or multiple traumatic life-events during adulthood, such as bereavement, abuse, accidents, or near-death experiences, that have been linked to post-traumatic symptoms (Grabrucker, 2013; Sharain et al., 2009). Furthermore, Kupferstein also asserts that mothers who were exposed to childhood trauma, including physical, emotional, or sexual abuse are nearly twice as likely to give birth to a child with autism. Recognition that childhood trauma may be caused by parental trauma is evidenced in research related to transgenerational transmission of parental trauma and/or trauma affected parenting (Fargas & Dillenburger, 2016).

Kupferstein (2018) compromises her own conclusions with the statement that “[a]utistic people have a sensitivity to the way any situation is initially appraised, and a benign situation which was perceived as harmful or threatening to the individual can become a PTE [potentially traumatic event] which could trigger PTSS due to their underlying vulnerability” (p.20). Clearly, then, even if these adults experienced helpful and “benign” interventions, the vulnerability, sensitivity, and sensory over-selectivity that is part of the diagnosis (APA, 2013) could have led to PTS symptoms.

There are many other severe methodological problems with this study that were exposed some time ago and for these reasons the study itself has been discredited. “Kupferstein’s results should be viewed with extreme caution due to several methodological and conceptual flaws including, but not limited to, leading questions used within a non-validated survey, failure to confirm diagnosis, and incomplete description of interventions.” (Leaf, Ross, Cihon, & Weiss, 2018, p122). Yet, the myth that interventions that are based on the scientific application of behavioural principles causes PTSD remains and is cited frequently in tribunals. In reality, there is much more evidence that people with a confirmed diagnosis of PTSD seek and are supported by effective and evidence-based behaviour analytic procedures, such as behavioural activation, graded exposure (Gros et al., 2012) and cognitive behaviour therapy (NICE, 2017).

 

  1. “ABA causes suicide.”

The idea that ABA causes suicide is related to recent findings that people on the autism spectrum tend to die much younger than other people (Hirvikoski et al., 2015). The reasons for premature death are mainly co-occurring health conditions or mental health issues; there is no evidence for any relationship whatsoever between premature death or suicide and ABA-based interventions (Ellis, 2019).

On the contrary, ABA programmes that focus on prevention of elopement and improving water safety (Martin & Dillenburger, 2019) or those that teach social and life-skills (Vismara & Rogers, 2010) or communication skills (Ellis, 2019) have been identified as improving quality of life and therefore have the potential to prevent suicide and premature death (Smith DaWalt, Hong, Greenberg, & Mailick, 2019).

 

  1. “ABA uses conversion therapy.”

Conversion therapy refers to abusive pseudoscientific medical, spiritual, and psychological practices of trying to change an individual’s sexual orientation or gender identity that were used in the 1960s (Feldman, 1966). The treatment was driven by psychoanalytic theory exemplified by the work of Irving Bieber (1965), although some of the early practices included behavioural methods (Haldeman, 1991).

Since then, conversion therapy has been de-bunked and considered torture; however, sadly, it still is legal in some states in the USA. Modern-day behaviour analysts and ABA practitioners are not involved in conversion therapy (Haldeman, 1991).

 

  1. “ABA creates robotic behaviour” or “New skills are only masking autistic behaviours.”

At times the argument is put forward that ABA creates robotic behaviour in the child and that even if the child learns new skills through ABA-based interventions these are only acquired at a surface level and only mask the real personality of the person. They are not real. This perception is perpetuated by the fact that in ABA programmes complex behaviours or tasks are broken down into small “learn units” (Greer & McDonough, 1999). This is necessary when the child does not have the pre-requisite skills for complex tasks or is in the early phase of learning a new skill. Anyone learning a new skill will seem “robotic” at the beginning; just listen to a child in the early phase of learning to play a new instrument or an adult learning a new language.

If acquired skills are regarded as being merely evidence of surface learning, it may be because teachers are not familiar with the deep learning associate with fluency training. Clearly, the learning is not complete until students are able to carry out the new skill with fluency. In fact, behavioural fluency training (i.e., developing accuracy and speed) has been one of the hallmarks of ABA in most contemporary programmes for the past 20 years or more (Binder, 1996). Other key aspects of ABA-based interventions that enhance long-term deep and meaningful behaviour change and behavioural fluency are prompt fading, behavioural momentum, maintenance of behavioural gains, and generalisation of skills to novel situations and settings (Cooper et al., 2020). ABA is a very broad field that has pioneered many different kinds of procedures that lead to meaningful and socially important behaviour change (see e.g., Luce et al., 1996).

 

  1. “ABA follows a medical model that only deals with behaviour, not the whole child.”

The argument that ABA is based on a medical model (focus on physical/medical impairments), rather than a social model (focus on environmental adjustments) is particularly intriguing, given that the focus in ABA is on arranging environments (e.g., antecedent interventions, prompting, task analysis, video-modelling; Steinbrenner et al., 2020) and/or establishing environmental contingencies (e.g., naturalistic environment training, discrete trial teaching, social and life-skills training; NAC, 2015) to enable and empower the child to live a full and happy life within their respective social and cultural contexts (Glenn, Ellis, & Greenspoon, 1992). The broad, holistic definition of behaviour that is the basis of ABA, mentioned earlier (i.e., behaviour is the interaction of the child with their environment), clearly identifies the focus of ABA on the whole child and their social, emotional, cognitive, sensory, and physical development (Heward, 2003).

 

  1. “ABA is too expensive.”

Government decisions about the most appropriate response to diagnosis are very important given the evidence that about 20–40% of children who receive appropriate ABA-based intervention can achieve “optimal outcomes” (Orinstein et al., 2014), potentially saving 65% of the cost for supporting adult services (Jarbrink & Knapp, 2001). Cost savings analyses show that ABA-based interventions can allow parents to remain in gainful employment, thereby remaining socially included in the workforce and avoiding a fall into the poverty trap (Knapp, Romeo, & Beecham, 2009). In Ontario, Canada, Motiwala et al. (2006) estimated that annually CA$45 million can be saved if ABA-based early interventions are made available to all children diagnosed with autism. On the basis of this and other similar research, the government in Ontario implemented State-wide ABA services (Committee et al., 2014; Perry et al., 2008; PPM-140, 2007).

In the Netherlands, Peters-Scheffer, Didden, Korzilius, and Matson (2012) concluded that a “compelling argument for the provision of EIBI [early intensive behavioural interventions] is long-term savings which are approximately €1,103,067 [US$1.3 million] from age 3 to 65 years per individual with ASD. Extending these costs to the whole Dutch ASD population, cost savings of €109.2–€182 billion have been estimated, excluding costs associated with inflation” (p. 1763).

Ultimately the cost of any ABA-intervention is linked to staff cost. The science of behaviour analysis itself is free (Freeman, 2003). In the UK, children on the autism spectrum who need support are usually allocated either full-time or part-time staff time in the form of teaching assistants. If these teaching assistants were trained and supervised to deliver ABA-based programmes, this would entail no additional staff cost.

 

  1. Behaviour analysts are biased towards ABA.”

The argument that behaviour analysts would be biased in favour of behaviour analysis and therefore should not be listened to, is akin to the contention that biologists would be biased toward the discipline of biology when presenting facts about biology, or physicist would be biased toward the discipline of physics when presenting facts about physical phenomena. It simply does not make sense to say that a scientist would be biased towards their science when investigating phenomena within the purview of their science, simply because they have studied it for many years and are knowledgeable in it.

Ultimately, the decision regarding the needs of the child comes down to the data. Research has shown that ABA-based interventions not only outperform eclectic approaches (Dillenburger, 2011; Howard, Stanislaw, Green, Sparkman, & Cohen, 2014) but also are more effective than other commonly used programmes (Callahan, Shukla-Mehta, Magee, & Wie, 2010) in teaching social, academic, and life skills, thus improving quality of life. In order to make informed decisions regarding a specific child, tribunals should demand to see the assessment data collected by the education system that argues that the child’s progress in their classroom is the same or superior to the progress made in ABA-based programmes.

With these data they could make comparisons with the data collected in ABA-based programmes; where available, video recordings of the child can be very helpful. This would be a practice in keeping with data-based decision making that is at the heart of ABA. Heward (2003) put it this way:

 

“Teaching not only can but must be guided by science if students with disabilities are to learn as much as they are able to learn. Scientific research can help us discriminate between effective and reliable practices and those that are false or merely fashionable. The popularity of a particular curriculum or method does not necessarily correlate with its effectiveness.” (p. 200)

 

  1. “I am against ABA.”

This argument is made in many different ways, e.g., “We don’t need ABA, we already are doing everything the child needs”; ABA is no different from quality teaching”; “ABA is not the only thing that works”; “I have been instructed not to do to ABA”; or words to that effect.

 

Ultimately, these statements all have the same clear and honest message: “I am against ABA!”. The first question that needs an answer is: “What do you mean by ABA?” The definition given usually refers to specific interventions such as DTT or even just “Lovaas therapy”. Clearly, this is very different to the official definition, mentioned earlier, that ABA is the applied branch of the natural science of behaviour analysis, that focusses on socially relevant behaviour (Baer et al., 1968; Baer, Wolf, & Risley, 1987; Cooper et al., 2020).

Given their limited definition of ABA, those who argue this point purport that the approach or programme used by the school is all that is necessary for the child’s education. A closer look at some of the widely used approaches shows that, at best, these are aspirational without much detail as to how to achieve the aims (Prizant et al., 2003). At worst, they are an eclectic “pick and mix” or commercial off-the-shelf, one-fits-all approach that sometimes claims to use “elements of ABA” without specifying what they mean by this (PBS Coalition UK, 2015; Virues-Ortega, Julio, & Pastor-Barriuso, 2013). These approaches generally lack evidence of effectiveness or have been shown to be less effective than ABA-based interventions (Howard et al., 2014; NAC, 2015; NICE, 2013; Steinbrenner et al., 2020).

Sometimes, educational establishments make a perplexing distinction between “traditional” vs “contemporary” ABA (Prizant et al., 2003). This idea seems to contend that a behaviour analyst would deliberately ignore advances and new discoveries in their science in order to practice in an outdated traditional fashion. Generally, it is the mark of good science to discover new facts that supersede previous theories. As Lior Pachter, professor of computational biology at the California Institute of Technology put it, “when users are using very old tools that we really know are not the right thing to use, it in a sense devalues the contributions of all of us developing new methodology… It sends the message that it doesn’t really matter what program you use, that they’re all similar—and that’s not really the case…” He proposed that there should be a message that says, “You can use this, but there are newer and better tools” (cited in Offord, 2018). Surely, it beholds the educational establishment to stay abreast of the best, most up-to-date evidence.

Still, education authorities often argue that the appointed teacher or teaching assistant can deliver all the education the child requires and propose that there is no need to introduce ABA-based interventions. Alternatively, the argument may go, “we are already doing ABA, so there is no need for more”, or “ABA does not fit into our teaching system or philosophy”. Sometimes, the arguments appear to say “We would rather do anything, as long as it’s not ABA”. Either way, it is important to remember, as outlined earlier, that teachers and teaching assistants generally have little or no training in ABA and oftentimes also have very limited training in autism (Dillenburger et al., 2016; Fennell & Dillenburger, 2018). Furthermore, there is no clear coherent definition of “special education”. In fact, special education generally is defined as an “eclectic assortment of educational and therapeutic techniques that are as varied as the school districts from which they come” (Chasson, Harris, & Neely, 2007, p. 402).

 

“The eclectic practitioner is likely to be an apprentice of many models but master of none. Being skeptical of eclecticism is not the same as believing there is only one effective method of instruction. It signifies instead an understanding that not all models and approaches are equally effective, an awareness that some approaches may even have a deleterious effect on student learning, and a commitment to using only those instructional tools with empirical support for their effectiveness. A defining characteristic of a good special educator is knowledge and skill in using a variety of instructional methods.” (Heward, 2003, p196)

 

At times, those who argue against ABA-based interventions contend that “An ABA programme isolates a child in a classroom and does not sit well with other methods used by teachers.” This is an odd and worrying comment given that the focus of ABA is on helping a child acquire skills that allow him/her to be fully integrated with peers. In fact, ABA is guided by the attitudes and methods of scientific inquiry and all ABA-based procedures are described and implemented in a systematic, individually tailored manner with a clear focus on socially significant behaviour that leads to meaningful improvements. A thorough analysis of the factors responsible for improvement is part and parcel of ABA (Cooper et al., 2020). Therefore, it is clear for all to see that comments such as those cited above come from poor understanding of good quality ABA-based programmes in a setting where staff are not equipped with the skills in ABA to ensure that a child is not isolated and that the interventions and rigorous measurements or assessment methods are seamlessly integrated into the smooth running of a classroom (Heward, 2005).

Interestingly, in the USA, due to the sheer amount of evidence of effectiveness (Steinbrenner et al., 2020), ABA-based interventions have become so widespread they are viewed as the “gold standard” and are used routinely as “intervention/treatment as usual (TAU)” (Fein et al., 2013; Howard et al., 2014; Orinstein et al., 2014; Troyb et al., 2014).

 

In sum, the reasons why education and health authorities argue against ABA in tribunals varies depending on the myths they perpetuate about ABA. Given the lack of training in ABA, education and healthcare professional rely on Government policies to gain information. However, here too misconceptions about ABA are perpetuated (Dillenburger, McKerr, & Jordan, 2014) because well-trained behaviour analysts have been excluded from report writing teams and government bodies in the UK (Keenan & Dillenburger, 2018). In fact, these bodies often seek out members with no training in ABA, who hold explicit, and at times publicly expressed anti-ABA views (e.g., Milton, 2012; Notes, 2008). In the same vain, in tribunals health and education authorities purposefully select education or healthcare professionals known to have anti-ABA views, who are not trained adequately in ABA and therefore are ill-equipped as witnesses with regards to ABA (Howlin, 2013; Hughes, 2008; Jordan, 2001). In fact, professional ethics should prevent these people from making witness statements that clearly lie outside their professional area of expertise (BPS, 2009).

 

Impacts on decision making

While about a quarter of all SEND tribunal cases are heard in court, many other cases are settled out of court, because local authorities concede when faced with powerful evidence for the case, sometimes just hours before the hearing (Kids First, 2013). Either way, decisions about the provision of ABA-based services need to be based on accurate information. Apart from being aware of the importance of using witnesses that are knowledgeable about the child and about ABA and who can provide data on progress, there are a number of other considerations for tribunal courts, judges, and lawyers.

The ethical and precise application of the science of behaviour is the bedrock upon which ABA professionals base their work (ABAI, 2020; APBA, 2020; BACB, 2020; EABA, 2020). However, many of these professionals are not schooled in the vagaries that arise when communicating their science in the courtroom. This usually hostile and acrimonious context arises from the combined effects of misinformation about the scientific discipline of behaviour analysis, lack of available training of professionals, and the associated absence of any proactive policy implementation to support ABA-based interventions despite the available published evidence of effectiveness outlined in this paper and elsewhere (NAC, 2015; Steinbrenner et al., 2020). People who have never studied ABA unashamedly dismiss it without even the slightest concern about falling prey to the most basic form of propaganda and prejudice that is rife in the helping professions (Gambrill, 2012).

In the opening remarks to his seminal “Letters to a Lawyer” Don Baer (2004) outlined the complications that can arise when communicating the findings of the science of behaviour analysis in a courtroom:

 

“My judgement was that this audience had neither the time nor the tolerance for a course in the scientific terminology of behavior analysis. I see the irony in this: Behavior analysis is a discipline insistently built on denotational rather than connotational terms; that insistence has always been one if its definitive attributes.” (p. 5)

 

The implications of these words echo in tribunals across the UK, where the kinds of strawman arguments outlined above are proffered by educational authorities. Within the strictures and the inimical atmosphere of a SEND tribunal, the behaviour analyst cannot explain their science in necessary detail. In the witness box, they may be forced to respond to complex questions with one word, “Yes” or “No” answers. Answering “No” might be perceived as confirming a bias; and a more accurate answer, such as “It depends on what you mean by ABA”, might be construed as contempt. Complex explanations can be lost in the heat of the court room. Of course, there are lessons for behaviour analysts about putting scientific detail and jargon into terms understood in the courtroom (Dillenburger, 2012) but just as importantly, there are lessons for those who shape or make decision in the courtroom.

Ultimately, the question remains. Whose evidence about ABA should be trusted, that proffered by the local authority’s employees, witnesses, or lawyers, who are not trained in ABA and who make controversial, confusing, and at times even perplexing statements about ABA (Dillenburger et al., 2014), or the evidence provided by a certified behaviour analyst, who has spent many years of training at Masters level (APBA, 2020; BACB, 2020)?

There are some very inspiring examples of legal professionals who have made sure they have become well informed about the science of behaviour analysis and its applications. Their decisions are guided by the data that is put in front of them. They listen to the facts provided by experts in the science and not to the opinions of those who are publicly opposed to something in which they are not trained.

 

Conclusion

The ethical, professional, and personal drama that can play out in tribunals can be shocking at times. It is almost as if the parents are put on trial for being abusers, whose raison d’etre is to harm their children. The truth is that these parents are mustering all of their love to defend the opportunity for their children to acquire skills that others believed they were unable to acquire. These parents are using skills they were taught in ABA-parent training classes for collecting data as evidence of their children’s progress, only to be put on trial themselves for being “pushy” or “difficult” parents. So much for the rights of their children to be regarded as people deserving of equality of opportunity for a full and happy life (UNCRC, 1990).

As outlined earlier, ABA is the application of a complex science that, to be understood correctly, requires at least Masters-level university-based training. Since very few staff in education and health authority employment have received this level of training (Dillenburger et al., 2014), it is not surprising that misconceptions about ABA are rife. With so many parents across the UK petitioning for ABA-based intervention for their child in tribunals, this paper ensures that judges, lawyers and other related professionals are aware of the importance of accuracy (or inaccuracy) of the arguments on either side of the equation.

Ultimately, given all of the 50 States in the USA (as well as the District of Columbia and the US Virgin Islands) have introduced laws that mandate the availability of ABA-based intervention programmes, where appropriate and necessary, it is difficult to see why in the UK education and health authorities are so far behind the curve. The adoption of ABA-based interventions as “gold standard” for the education of children with autism in the USA means on 52 separate occasions governmental bodies concluded that there was sufficient evidence to warrant the justification of a new law to ensure access to these interventions. This is a phenomenal endorsement of ABA-based interventions. Yet, in the UK, when one of the best known autism researcher summed up 70 years of autism interventions, there was no mention of this (Howlin, 2013).

Judges, lawyers and other related professionals in the UK have a pivotal role to play in reversing this violation of the rights of the child with disabilities. If they do not take up the challenge and let this injustice continue, future generations will ask, “Why? What are their motives behind not endorsing a significant movement towards evidence-based autism practice that is guided by the application of the science of behaviour analysis?”

 

 

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Mickey Keenan1 & Karola Dillenburger2

 

  1. School of Psychology, Ulster University, N. Ireland
  2. Centre for Behaviour Analysis, Queen’s University Belfast, N. Ireland

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