We are partners in discovery with each individual autistic child and their families

Liz Pellicano

Educating children diagnosed with an autism spectrum condition is a serious business. Autistic children often face difficulties as they interact with and experience the world around them. Many also have additional challenges with their learning and behaviour and are at an increased risk of developing mental health problems. All this has serious consequences for their futures. Add to that the difficulty families often say they face in convincing the authorities to support the needs of their child, and you have an extremely difficult situation for parents in deciding what to expect from the education system.

Early diagnosis and intervention are now widely cited as giving children and families the best shot at improving later opportunities. Yet there are a diverse range of therapies and interventions available for children with autism, which vary widely in terms of their underlying philosophy, the way that they are delivered, the intensity of the programme (number of hours per week), the degree of parental involvement and the cost to families and to government.

One particular intervention, Applied Behavioural Analysis (ABA), has hit the headlines in the past week. It is the subject of a new documentary, “Challenging Behaviour”, screened on BBC4 on Tuesday 5 November. The programme examines the Treetops School, which strongly advocates the use of ABA, and also features people who are more critical.

Behavioural techniques like ABA incorporate basic learning principles, such as positive reinforcement, in an effort to change behaviour. The use of these principles is ubiquitous – in our homes, schools, in business and even by our government. That’s how children often learn to navigate their own environments in their youngest years, not touching hot radiators again or quietening down at the dinner table when parents offer them a reward. ABA harnesses these principles in order to increase appropriate behaviours and reduce or extinguish those that might cause harm or interfere with a person’s learning or everyday functioning.

This approach has been used extensively with children, young people and adults with autism in the UK and, especially, the US. But it has also spawned much controversy and criticism.

So what is all the fuss about? There are two key problems.

The first relates to claims from some of the most confident exponents of ABA that it could lead to “recovery” from autism. In 1987, Ivor Lovaas published a paper claiming that, with intensive intervention (~40 hours per week for two or more years, 1:1 with a therapist), just under half of children with autism  made such marked improvements that they were reported to have “recovered”.

Many commentators (including autistic people themselves) take issue with these claims of ABA and its underlying goals. Lovaas himself once stated that his objective was to make autistic people “indistinguishable from their peers”. But this kind of cure/recovery claim has been deeply damaging. Sometimes such claims give parents false hope. It simply isn’t true that ABA can “cure” people with autism. Furthermore, the idea that we should be aiming for a “cure” in the first place is often dangerously insulting to autistic people themselves, who feel that a goal of “normalization” is not the best way forward for ensuring quality of life. These kinds of claims send out the message that an autistic life is not worth living.

The second problem lies in the claim by many ABA practitioners that it is “better” than other existing approaches in helping autistic children to learn and to settle into a better quality of life. It is frequently claimed that ABA has a better “evidence base” behind it and is more grounded in the scientific literature. The reality is, however, that ABA has rarely been tried-and-tested in rigorous randomized controlled trials. And nor has it been systematically compared with other approaches.

This is not a problem unique to ABA. In work recently conducted here at the Centre for Research in Autism and Education, we surveyed all of the research funded on autism in the UK between 2007 and 2011. We discovered that only 18% of research funding actually focused on the nature of educational and other therapeutic interventions. Individual parents and schools will have their own experiences and views, of course, about the programmes they employ but as scientists we actually know almost nothing about the quality of any one of them. So, sadly, at present there is no real evidence to suggest that one intervention is better than any other.

So what should parents and teachers do in a situation like this? How should they choose between all the different programmes on offer?

In the long run, the answer will involve doing the very best, world-class research on interventions to improve the educational chances of children with autism and to enhance their quality of life. But that does little to answer the pressing needs of parents and educators in the here-and-now.

I believe there are three principles that should guide all of us who try to help children with autism.

First, any programme of intervention must acknowledge the huge breadth of autistic characteristics and the way in which individual autistic children change and develop over time. Autism is an incredibly complex and diverse condition, and the individual needs and capabilities of children must be considered as a whole, incorporating their communication needs, their social interactions, their ability to control their own behaviour to their own advantage, their potential sensory sensitivities (to touch and sound, for example). Programmes for autistic children must be individual and not focused on any one small dimension of the autistic spectrum.

Second, programmes of intervention should recognise the distinctive strengths of autistic children as well as the difficulties they face. Many autistic children have exceptional memories, display an exquisite focus of attention and have an aptitude for processing visual information. Even when those talents are not so readily identifiable, we must not assume that autism is incompatible with significant achievement and learning in many cases. We must be ambitious and have high aspirations even for those children that appear the most challenged, and even when it is very difficult for all concerned.

Third, and most important of all, given the paucity of good evidence that is available to teachers and clinicians, we must always acknowledge that we are partners in discovery with each individual autistic child and their families. We must be vigilant to the dangers of being dogmatically dedicated to any one therapeutic programme or set of ideas. Instead we should be open to listening to and working with the individual children and their families that we are trying to serve. Educators have as much to learn from the children with whom they work as those children do from them.

Finding the right education for autistic children remains very difficult for thousands of families across Britain. But if we keep these principles in mind, we will avoid the pitfalls that beset some of the approaches that are found in schools today.

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Posted in Special educational needs and psychology
14 comments on “We are partners in discovery with each individual autistic child and their families
  1. professor Rita Jordan says:

    Well done Liz! A very sensible and sensitive reply. What also needs to be recognised is the difference between what Mesibov has identified as “Evidence supported treatment’ (statistical evidence of the general effectiveness of particular approaches/ treatments) versus “evidence based practice’ (particular evidence of effectiveness for particular individuals in particular situations). Scientific research inevitably concentrates on the former (using a physical model of what is ‘scientific’) whereas parents and practitioners are more concerned with the latter – starting with the child and asking the question ‘what is the best intervention for this child in this situation`?. Of course, EBP takes account of EST in deciding what interventions might be worth trying but it also takes account of particular characteristics of particular individuals, the aptitude and capacity of the trainers, the process of the intervention and the particular goals you want to achieve (based on the values you hold). It is ludicrous to suppose that a didactic discrete trials programme can teach social interaction skills, for example, just as it would be to suggest a play programme aimed at developing social interaction would be the best approach to teach specific practical or academic skills. Surely we should adopt educational understanding and stop colluding with what is in effect a market place in autism – exploiting the vulnerability of parents that you document so well.

    • kisley says:

      Dear Prof Rita Jordan,

      Could you please suggest any reading on the Mesibov’s identification of the “Evidence supported treatment” ??? I would like to know more about it as it seems very interesting!

      Thank you

      • Blog Editor says:

        Dr Jordan has replied that the reference is: Mesibov, GB & Shea, V (2010) The TEACCH program in the era of Evidence-based practice Journal of Autism & Developmental Disorders, 40, 570-579

      • kisley says:

        Dear Dr Rita Jordan, thank you so much, I am sure I will benefit a lot from reading the recommended paper for my research, all the best, Kisley

  2. Rach says:

    Dear Dr Pellicano,

    Thank you for an interesting blog post. Your article has, for me, however, created some false equivalences which I feel compelled to correct.

    Over the course of your essay you have commited a fairly sizeable category error by equating ABA with a specific intervention; namely, Early Intensive Behavioral Intervention (EIBI) for children with autism. This is evidenced by your discussion of “proponents” and “claims” of ABA, and the fact you provided a link to one systematic review of comprehensive early intensive intervention (e.g., not ABA). While it is true that EIBI involves the application behavioural principles derived from the science of behaviour analysis, it is incorrect to say that EIBI is ABA. To illustrate, the Picture Exchange Communication System (PECS) is derived from the science of behavior analysis. PECS is as much ABA as EIBI is ABA. Of course criticising PECS as an attempt normalise children with autism makes little sense. Functional Analysis (FA) methodology is derived from the science of behaviour analysis. Does Functional Analysis of challenging behaviour seek to normalise children with autism? Again, Functional Analysis and the treatments informed by it as a result, are as much ABA as EIBI is ABA. Both of these methodologies are widely used in educational and treatment contexts with children (and adults) with autism. If you haven’t come across Functional Analysis please review the recent (2013) NICE guidelines on the treatment and management of autism in children and adults. NICE recommend the use of FA’s in the assessment and treatment of behaviour which challenges.

    My point is that talking about ABA as a specific intervention, with proponents and specific goals is inaccurate, misleading and unhelpful. As an aside, I am a behaviour analyst and I find little in the final three paragraphs of your piece that I disagree with.

    Dr Jordan, In response to your contribution regarding the distinction between EST and EBP. Actively demonstrating functional relations between independent variables (treatment) and value-driven behavioural outcomes (with a specific individuals, in specific contexts) are foundational principles of ABA (for defining features see Baer, Wolf, & Risely, 1968). It seems somewhat ironic that this crucial (and often overlooked) point has been made in the context of this article.

  3. Penny Clark says:

    I very much enjoyed reading this post. A child centred approach is central to the work we do at our school, despite the external pressures we face.

    Once further research is out there we just need to get all if us teachers reading it!

  4. Fred says:

    I would recommend that anyone reading this article visit the following webpages to become better informed about the matter:

    Professor Hastings provides an accurate picture of ABA:

    http://profhastings.blogspot.co.uk/2013/10/bbc4-challenging-behavior-film-on-aba.html

    http://profhastings.blogspot.co.uk/2012/12/autism-evidence-3-what-is-aba-for.html

    Here is an excellent overview of the evidence behind EIBI in 2013:

    http://www.intechopen.com/books/recent-advances-in-autism-spectrum-disorders-volume-i/early-intensive-behavioural-intervention-in-autism-spectrum-disorders

  5. Fred says:

    I would love to hear Liz or Rita’s thoughts on the following presentation – especially with regard to RCTs. I’ve always wondered why some autism researchers say that ABA shouldn’t be recommended because there aren’t enough RCTs but they have no issues with people without training in any autism interventions using TAU or an eclectic approach in the absence of RCTs.

    http://www.mediator.qub.ac.uk/ms/Quart/DrNeilMartin/Player.html

    I’ve always wondered why it is that British researchers come to such different conclusions about ABA than many American autism researchers. Given that the American studies and reviews are better resourced and generally make less errors with regard to how they characterise ABA, it has always surprised me that they don’t seem to be given due attention when policies are being forged.

  6. Rich says:

    Hi Dr Pellicano

    It would be really helpful if you were able to find the time to respond to some of the very important points raised above. As an expert in the field of autism education research your opinion is highly valued.

  7. Thanks everyone who has responded so interestingly to my piece – all these comments provide much food for thought.

    My own view remains that there is limited empirical evidence for the efficacy – or indeed effectiveness – of intensive ABA interventions (the link in the article above points to a systematic review from US researchers which concludes just that). We simply do not know what works best for which child with autism.

    In the absence of such evidence, I believe that the best approaches to working with children, young people and adults with autism need to be flexible in nature. This is especially the case given that we know that no two autistic individuals are alike.

    I also believe that we have a great deal to learn from engaging with autistic adults themselves, who have gone through ABA or alternative approaches. We need to attend to their experiences and be open to adjusting our approaches as a result.

    • Fred says:

      Thanks for the reply Liz.

      It may not have been your intention, it would seem to many that you seem to suggest that ABA is not flexible. The reason ABA works is because it is individualised to needs and abilities of a particular client. At its core, it involves the assessment of functional relations between variables and the use of data based decision making.

      With regard to intensive behavioural intervention for people with autism, once the therapist has assessed a client’s current level of functioning and the barriers to their learning, they can draw from a range of empirically validated treatment packages, techniques and methods to meet the needs of their client. This can include the use of PECs, behaviour contracts, functional assessments, pivotal response training, discrete trial training, visual supports, token economies, reciprocal imitation therapy, video modeling, direct instruction, self management training, precision teaching, natural enviornment teaching, errorless learning etc. What is this, if not flexible?

      When ABA has been investiaged as a treatment for the problems of children with autism it has been found to be highly effective by the US Surgeon General, the New York State Department of Health, the Maine Administrators of Services for Children with Disabilities, the US Department of Defense, the National Institute of Mental Health, the Association for Science in Autism Treatment, the National Academies Press, the Organisation for Autism Research and others.

      Most importantly, when the groundbreaking and comprehensive 2009 National Standards Project investigated interventions for people with autism using methods that are appropriate to the study of the area, they found that almost all of the methods that have an empirical base are derived from ABA. If any researcher is going to claim that there is weak evidence for ABA they really need to explain why it is that they do not agree with the conclusions of the largest and best resourced study of autism interventions that has ever been conducted.

      In addition, they need to address the 6 peer reviewed meta-analytic reviews that again show ABA to be superior to the so called “eclectic” approach.

      Describing the evidence for ABA as “weak” isn’t enough. What is it supposed to be weak in comparison to? Is it weak in comparison to TEACCH? Is it weak in comparison to RDI? Is it weak in comparison to the Son Rise Program? And where is the evidence for the effectiveness of the treatment as usual or “eclectic” approach that is the default treatment when ABA or any of the other interventions I just mentioned are not used? Based on the peer reviewed studies where ABA and the “eclectic” approach are compared, one can only conclude that the evidence currently indicates that ABA is superior – even when ABA is supposed to be a component of the eclectic approach.

      If one is going to call the evidence for ABA “weak” in spite of the wealth of evidence supporting it because there aren’t enough RCTs, then what does that make the evidence for the alternatives? By the standards of the field of autism interventions, the evidence for ABA is strong. That is not to say that we do not need more and better quality studies of the long term outcomes of autism interventions in general, but researchers need to realise that parents – and practitioners – need to make decisions today. We cannot afford to wait around for the perfect RCT.

  8. Dr Laura Cockburn says:

    Thanks Liz. Your measured and balanced response is very helpful in an area that continues to cause controversy and distress for both parents and professionals. I think the overview that you have provided should be useful for all!. Regards Laura

  9. Jane McCready says:

    I am sorry to be blunt but I find your article bland and patronising – lots of fine words, zero actual education or help for my severely autistic son, for whom I speak.

    ABA did not try and “normalise” him, this is sheer guff and sophistry.

    It taught him the life skills he needs to give him dignity and a decent quality of life: from talking and basic reading right through to using a toilet and not punching himself or his sister in the head.

    These things his teachers in the “eclectic/Teacch” school he attended before ABA were singularly unable to give him.

    They would have left him in nappies and aggressive, and would have called that “respecting his autism”.

    Liz – you need to start listening to mums like me, who are not mums to high functioning children but whose more severe children’s voices deserve to be heard too.

    I am not some mug punter taken in by false claims of “cure” from way back when in the old days of ABA.

    I am a mum and stepmum of 4, a 15-year veteran of a director-level career in investment banking, a qualified teacher and a Cambridge MA.

    I have seen what works, as have very very many of my friends using ABA.

    Please stop this knee jerk anti ABA rhetoric and start listening?

  10. I wonder is anyone still reading this blog, if so, please remember that ABA is the application of the scientific discipline of behaviour analysis, not ‘an intervention for autism’. The science of behaviour analysis is where the basic principles of behaviour have been discovered that are now applied to help so many individuals on the autism spectrum. Of course you cannot establish the effectiveness of the application of a whole, using an RCT. That’s like saying, do an RCT of medicine before we apply medicine to everyone who needs it.

    Rach (November 5, 2013) is of course right that the initial blog committed a category error (by equating ABA with a specific intervention) that should really not happen to a supposedly well-read academic.

    That aside, there is now good evidence that ABA-based early intensive interventions are statistically significantly related to ‘optimal outcomes’, which means fulfilling potential (the debate about to-cure or not-to–cure is merely a red herring to distract attention from the facts; see Orinstein et al. 2014 http://www.ncbi.nlm.nih.gov/pubmed/24799263 and also Dawson, 2014 http://www.ncbi.nlm.nih.gov/pubmed/23101741)

    Contrast these results with Howlin et al (2014) who found very very very poor 40-year follow up outcomes in the UK. As they said themselves, these individuals did not benefit from early behavioural interventions. No surprise there!
    https://kclpure.kcl.ac.uk/portal/en/publications/cognitive-and-language-skills-in-adults-with-autism(54166a2f-f157-444b-a132-19e8da88cfda).html

    The question that parents and professionals in the UK should ask is: Why are federal and State laws in 37 of the States in the USA mandating health cover for ABA? Why are ABA-based interventions considered medically and educationally necessary in the USA? Why are Board Certified Behaviour Analysts (see bacb.com) the key professionals that deliver these programmes? Why are those who deny ABA-based interventions considered in breach of human rights? (see http://www.autismspeaks.org/search/apachesolr_search/aba)

    When is the UK going to catch up with the USA and Canada?

    Are we going to wait until 2054, when we will read another Howlin et al. paper about today’s kids?
    Because: “If we keep doing what we are doing, we will keep getting what we are getting.”

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