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Science that could improve the lives of people with autism is being ignored

Written by Professor Mickey Keenan, BCBA-D, University of Ulster, Northern Ireland

The economic costs associated with autism spectrum disorder run at £32 billion per year in the UK, more than heart disease, stroke and cancer combined. For children with autism this includes special education services and the costs of their parents not working as much in order to care for them. In the UK, costs for adults are even higher and include residential care or supportive living accommodation and limits on the work they can do according to their abilities.

The science of applied behaviour analysis (ABA) has been shown to have significant success in helping people with autism who ask for help. This evidence-based practice can also help reduce the associated economic costs.

This science involves the systematic use of behavioural principles to help those diagnosed with autism make socially significant changes in their behaviour. In doing so, individuals and families are provided with new opportunities for making personal choices. For example, ABA has enabled families to holiday together for the first time.

Currently, 41 States in America have enacted new laws to ensure that ABA is available under health insurance. By contrast, the body that advises the NHS in England and Wales, the National Institute for Clinical Excellence, concluded that it could not find any evidence to support ABA and therefore could not make a recommendation about it.

Similarly, Research Autism argues that:

Because there are many different interventions, programmes and techniques used to help individuals with autism which incorporate the principles of applied behaviour analysis it is not possible to provide a ranking for as a whole.

Spread of misinformation

This gulf in perspectives between Europe and the USA can be explained by the lack of available training in ABA in Europe and the fact that professionals without appropriate training perpetuate the misinformation that has then shaped government policies on autism.

This is not to say that progress in the USA has been straightforward – but there have been more professionals trained in ABA in the USA who could correct the sort of misinformation that has impeded uptake of the science in Europe.

The supporting evidence for using ABA is routinely reported incorrectly in Europe. For example, a report in the Autism Europe newsletter that references 70 years of research in autism is devoid of reference to the extensive body of evidence that has informed decisions in the 41 US states where ABA is supported.

In the UK and Ireland, misrepresentations of behaviour analysis are also rife in government reports and in the media. ABA has been branded “controversial” and accused of promoting a “normalisation agenda”. Using insights from the science of behaviour analysis, critics argue, should be discouraged for fear of silencing the autistic voice and forcing people to change their behaviour so as to conform.

Classic propaganda techniques, such as distortion and fabrication, have been used to portray ABA as a “cult” and have been used to chastise those who dare to correct misrepresentation. The result is that a whole science has been marginalised.

ABA scientists and practitioners are not guilty of anything except increasing our awareness of principles of behaviour and showing how to apply them for the benefits of others. But the accusations made against them are the equivalent of accusing physicists of coercing people to “stick to the Earth” because of research they conduct on gravity.

A more honest approach when dealing with the findings from any scientific endeavour is to reflect on the challenge of how best to use the principles that have been uncovered. Where autism limits choices people can make, the focus of ABA is on skills development and thus empowerment. But this is only possible when there is appropriate investment to make the science available.

Ethical impact

The damage wrought by misinformation is far-reaching and difficult to counter. A former Northern Ireland minister for education is on record as saying that ABA was “one of many commercially available interventions for children with autism". This statement is a clear indication that the minister has been misinformed about ABA. This raises serious ethical questions in relation to ministerial advisers operating outside of their area of expertise.

Another opportunity to correct one of these errors of misinformation was lost when Northern Ireland’s minister of health, social services and public safety admitted that no professional body specialising in behaviour analysis has ever been consulted about the nature of ABA.

Why shouldn’t parents be trained in a science that has produced remarkable results? This is the question that parents have been putting to governments in other countries as well. Unfortunately, in the UK, misinformation and the associated caricatures of ABA form the basis of government strategies and policies, with implications for how to deliver care services and parent/staff training.

Perhaps things will only change in the UK when the judiciary steps in at the behest of parents to stop the questionable academic and ethical integrity that currently misinforms policy makers. The opinions expressed by parent groups suggest that this day is fast approaching.