Liz Pellicano
In the summer of 2010, as England were being knocked out of the World Cup, something all together more hopeful was happening at Institute of Education. Jonathan Wolff (UCL) and I had invited a collection of scientists, social researchers, parents and autistic people to join a discussion on the way in which autism is understood and investigated in academia today.
Neither of us could have anticipated the response we received. The enthusiasm for the chance to debate and discuss complicated and emotionally charged issues like the ‘cure’ and ‘prevention’ of autism vs. notions of autistic differences and what some call ‘neurodiversity’ was astonishing – despite, and perhaps even because of, widely opposing views.
This event led colleagues and me at the Centre for Research in Autism and Education to consider more fully the need to engage the autism community – autistic people, their family members, those who support them and researchers – in research and its many implications. Over the past few years, we have made efforts to improve awareness of autism research, through our newsletters and social media networks (Twitter, Facebook), and to get people involved in discussions about controversial and complex issues about autism, through our free and public events at the IOE.
The high point of this work so far has been a project, A Future Made Together, funded by Research Autism, which conducted the most comprehensive review of autism research in the UK ever undertaken. Tony Charman, Adam Dinsmore and I set out to discover how much was spent on UK autism research and which areas were being addressed. We consulted with over 1,700 autistic people, their families, practitioners and researchers to understand what they thought of current autism research in the UK and where the funds towards autism research should be prioritised.
Our Report acknowledged the many great strengths of autism research in the UK such as our leading work in the area of cognitive psychology. But it also saw considerable challenges in the years to come. One of these was highlighted in a discussion with parents of children with autism. While they were impressed by the amount of work that goes into autism research, they were not convinced that research had made a real difference to their lives.
One woman said:
“I fill in all these questionnaires and do everything I can to help … but when it comes down to it, it’s not real life. It’s always missing the next step. It’s great you’ve done this research, you’ve listened to my views … but now do something with it.”
Too many people feel that there is a huge gap between knowledge and practice. Research doesn’t seem to help their child catch the train by themselves or keep themselves safe. And it doesn’t say how to get autistic adults into jobs and keep them there.
The people we spoke to said that they don’t want to read about research in academic papers. They want to hear about research in accessible ways. And they want to see real changes and real things happening on the ground for them, for their child, or for the person they work with.
It turns out that there is a good deal of truth in the criticisms. British academics simply haven’t been taking much notice of real-life issues. Our analysis showed that the majority of UK research focuses heavily on ‘basic science’ – neural and cognitive systems, genetics and other risk factors – rather than on targeting the immediate circumstances in which autistic people find themselves, on services, treatments and interventions and education.
The autism community valued the need for basic research to understand better the underlying causes of autism – but they wanted a more balanced profile, weighting research with a direct impact on the daily lives of autistic people more equally with core areas of basic science.
Almost all the researchers I know want to make a difference to people’s lives. But how do we do that?
My view is that we need to take research in radical new directions. Without doubt, we need to continue to develop our world-leading skills in autism science. But significant investment is also needed in areas of autism research currently under-resourced in the UK. And in order to work out which areas need the greatest investment, we ought to be listening to people about what they want from research.
Autism researchers do not do this enough. According to our findings, autistic people, their family members, and even practitioners are rarely involved in the decision-making processes that shape research and its application. Research priorities are thus ordinarily set almost exclusively by funders and academics in specialist fields. This pattern generates concrete problems for those responsible for commissioning local autism services, people working in such services, and for autistic individuals and their families, when attempting to make evidence-based decisions on education, health and social care.
But this is also problematic because of the feeling of exclusion that it engenders. The people that we spoke to often felt disappointed and frustrated at being ‘mined’ for information and having little or no opportunity to learn about the resulting discoveries and what they might mean for them. They also felt as if their expertise and knowledge – what it is like to be autistic, to care for someone who is autistic, or to work with someone who is autistic – was disregarded by researchers. This lack of reciprocity resulted in feelings of distrust and disempowerment. One autistic adult said, “Whatever we say, is that really going to influence anyone?”
We need to turn this around. As researchers, we need to connect more with the people we ‘study’. We need to value and respect the expertise of the autism community and, at the same time, work with them to increase their ‘research literacy’.
At CRAE, we aim to develop innovative approaches to ensure that autistic people, family members and practitioners are able to participate more fully in the decisions that affect their lives, in the research lab, in schools, at work and in local communities. But developing these research-community partnerships is not easy. It takes time, effort and often funding. Institutions, grant-giving bodies and government agencies are promoting public engagement in research but much more needs to be done to develop supportive infrastructure, including providing the necessary training in participatory methods.
The rewards of working together are manifold. In fact, it may be the only way to ensure that the research that we do really counts.
 
CRAE is the winner of this year’s IOE Director’s Prize for public engagement.
 
 

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.
Twitter: @CRAE_IOE
Facebook: www.facebook.com/CRAE.IOE

Liz Pellicano
The question of who can best represent autistic people is deeply contested. Last week at the IOE, the Centre for Research in Autism in Education (CRAE) brought together journalists, headteachers, clinicians and campaigners to debate and discuss this issue. Although, unsurprisingly, there was no complete consensus, three main themes emerged from the discussion.
First, despite ongoing improvements in service provision for autistic people and their families, all of our contributors powerfully reminded us that all too frequently they struggled against authorities of various sorts to ensure that their own, or their children’s, needs were met. Guardian journalist John Harris spoke movingly of the battles he has endured to secure support for his young child in the West Country. He also described the anxiety it provoked as he had to decide how hard to push his case. Everyone involved in autism therefore needs at some point to acquire skills in personal advocacy, whether they find it easy or hard.
Improving personal advocacy, however, is not enough. The second theme was the need to develop effective collective representation of autistic people. Russell Stronach, Co-Chair of the Autistic Rights Movement (ARM) UK, reminded us that autistic people too often are represented in high-level policy debate predominantly by those with an indirect relationship to the autistic community itself. The diversity of the autistic experience – from those who can easily communicate their needs to those who struggle to speak for themselves – can make such collective representation difficult but Russell emphasised that this diversity is no reason to negate the fundamental democratic principle of “nothing about us, without us”.
This combination of the need for personal and collective advocacy took us to our third theme: the need to train individuals and groups in the skills necessary to advance their own cause. One member of the audience told how her son was given the confidence to develop ways of expressing his own requirements during a brief period of primary school education in the US and of the way in which this had transformed his educational experience.
Empowering individuals to speak for themselves – even for those without language – emerged from our discussion as a critical way forward for everyone in the autism community. Educators of all sorts have a vital role to play in enhancing these capacities.