Opinion: Policy should be informed by evidence instead of fake facts, but when is this going to be the case for the science of Applied Behaviour Analysis in Ireland and the UK?

By Professor Mickey Keenan, Ulster University and Professor Karola Dillenburger, Queen’s University Belfast

"It’s heart breaking for any parent to see their child struggle and I was left feeling that I let my son down as I couldn’t get him the help that he needs. For 10 years, I struggled to get my son an official diagnosis of ASD (Autism Spectrum Disorder), which eventually happened in April 2017.

"I was referred to a leading charity for autism in Northern Ireland, but no mention was made of ABA (Applied Behaviour Analysis). This was unusual, I thought, because from my own research I found that the science of ABA could help overcome the difficulties of everyday life that hinder him socially, emotionally and mentally.

"We rely so much as parents on advice given by professionals. But how can we make the best decisions for our children when we are not given appropriate information. Again, I was left feeling very hopeless and alone. I was denied my rights as a parent to avail of a service/therapy that has been shown to be effective for helping children." (Letter from a parent)

From RTÉ Rearing to Go, Taragh Loughrey-Grant talks to Grainne McGuinness, creator of Pablo a new RTÉjr series which explores the world through the eyes of a 5-year-old boy with autism, and Jake who is the voice of Pablo

Before you hear from another parent below, here is some context to understand just how extraordinary it is that ABA-based interventions are not actively promoted in Ireland and the UK. In the United States, where the science of Applied Behaviour Analysis (ABA) was developed, 45 states, as well as the District of Columbia and the US Virgin Islands, have introduced legislation to ensure that those affected by autism have access to ABA-based interventions. This means that it was concluded that there was sufficient scientific evidence to warrant the creation of new laws to ensure access to ABA-based services on 47 separate occasions.

So, why does this evidence have little or no impact on policy decisions here? Part of the problem is that there are very few courses that train students in ABA to international standards in Europe. When training is limited, misunderstandings grow

We have all heard about the problems with fake news and fake facts have been a problem in some very prominent discussions about ABA, as well as in some government-sponsored reports (see the DENI report from 2002 or this piece by the co-author). Another example of the ostrich’s head well and truly stuck in the sand can be found in the recent review by the National Institute for Health and Care Excellence (NICE) that dismissed ABA altogether.

It is easy to misrepresent a science that one is not trained in and that is why international standards of training are developed

Using particular methods that are recognised as providing the gold standard when assessing the effectiveness of interventions -i.e. Randomised Control Trials (RCTs) - they could not find supporting evidence for ABA. However, it is not appropriate to assess a scientific discipline using these methods. Indeed, you will not find any RCTs for any discipline such as medical science, physical science, speech and language therapy, psychology, etc.

It is easy to misrepresent a science that one is not trained in and that is why international standards of training are developed. An outline of the knowledge and skills developed by the internationally recognised qualification in ABA, the Board Certified Behavior Analyst (BCBA), is available here.

There is yet another layer that compounds the problem and this is when misinformation reaches a politician. Commenting on issues that arise when politicians and scientists communicate with each other, Ken Baldwin, director of the Energy Change Institute at the Australian National University noted the following: "science has evolved over many centuries to become an integral part of modern society, underpinning our health, wealth, and cultural fabric. Yet scientific evidence is often wilfully disregarded by politicians worldwide. They often cherrypick or ignore the science when it does not accord with their political agenda. We have seen "alternative facts" supplant scientific and other evidence bases in this "post-fact" era."

Drawing by Tara DK

In one sense, circumstances evolve inevitably to produce a perfect storm that impacts directly on the design of policy decisions. The result is that parents often have to do their own research to get at the truth at a time when they are most under pressure. When parents eventually get help from ABA-based interventions, their stories look like this:

"My fight for ABA therapy started when my son had been placed in SEN school for two years and still hadn’t made any progress. He was non-verbal, head-banging, violently aggressive, smearing faeces around the bedroom most nights and was violently aggressive. He stopped waving bye-bye at 10-months old and couldn’t imitate. My partner and I were desperate so we put him in an ABA school and the progress was astounding. I’ve kept a diary about his progress from when he first started ABA therapy and looking back you see how powerful ABA therapy really is. Within two weeks, aggressive behaviour was down to a minimum level. Within a month, he waved bye for the first time. After two months, he was sitting on the potty independently and making sounds because he was in the early progress of learning to talk, also using head gestures for ‘yes’ and ‘no’. The list goes on and on."

Policy should be informed by evidence instead of fake facts

Unless the Ostrich lifts its head out of the sand to see what it has been missing, it will not see the damage inflicted on vulnerable families. Of course, parents can bypass the ostrich and get trained in ABA themselves, with platforms like Simple Steps or STAMPPPbut that is simply not good enough.

Policy should be informed by evidence instead of fake facts, but who is going to help the ostrich lift its head out of the sand? Who is going to encourage it to scrutinise the evidence before each of those 45 US states to see why they concluded that there was sufficient support to enact new laws? Who is going to help it be brave enough to challenge the generally accepted notion of ABA being "controversial" and instead advance the argument that it is "not doing ABA that is controversial". Who is going to investigate those vested interests who have consigned parents and their children to a lifetime of worry and concern, simply because they cannot acknowledge that they got it wrong when they dismissed ABA?

Mickey Keenan is Professor of Behaviour Analysis at the School of Psychology, Ulster University Professor Karola Dillenburger is director of the Centre for Behaviour Analysis at Queen’s University Belfast.

The views expressed here are those of the author and do not represent or reflect the views of RTÉ