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“Autism research suffers no lack of funding, and the outcomes look promising. But there is a lot of work to do out there – we are only just starting to discover how much you can change in the transitional pathways of the disorder.”

Professor Tony Charman (King’s College London) is involved in some of the most important international research programmes on the development of young people with autism spectrum disorder. Charman studies the transition from at-risk children to the social-cognitive development of child and adolescent patients and the methodological use of the outcomes in clinical practice.
“In our research we spend a lot of time on the emergence of autism”, says Charman. “We look at how different pathways during the first few years of life lead some children to go on developing the disorder while others do not. And then there is the group in between about whom there seems to be some ‘doubt’, which is of particular interest to us. We try to learn from these developmental trajectories: we wonder why some of these children are all at the same risk but still their outcomes are rather different. Tracking that, we are now analysing data following up these children up to the age of seven, which may give us insights into the transitions along the way: who gets a diagnosis and how stable it turns out to be.”

 

Changing the pathways
– Could adapting the treatment to these different trajectories lead to better results?
“That is what we search for in our intervention studies: we aim to make differences between trajectories and try to divert children from a pathway where they would possibly go on to develop autism, to a more typical outcome. It is way too early to say that we may someday have an effective answer to each pathway, but recent studies show that the best results can be expected from treatment at a very early age. These studies take a lot of time and there is a lot of work out there; only recently have these studies started to have translational clinical value. In fact, we are just starting to discover how much you can change in the transitional pathways. We have a number of interesting case studies – like the one that Sally Rogers was running in California – and only now we are running randomised controlled trials. We are running a very promising study that I expect to be able to talk about at the ESCAP Congress, about trying to estimate what the clinical effects in terms of reducing autism outcomes might be. So we are just on the verge of beginning to know.”

– How early can signs of autism be detected today?
“Very new programmes in the United States and Europe are doing experimental studies with children before twelve months of age. We have a few papers under review about children who show signs from four months of age that lead to emergent signs of autism at twelve to fourteen months of age. This is controversial: there are still different views on how to judge these early signs, and how predictive they are. But by experimenting with the help of new technologies, such as brain responses and eye tracking, we do clearly see these signs. And there is increasing consensus that there may be signs that can be detected at a very early age. As a part of the EU-AIMS initiative we have seven sites in Europe where we are using shared methodologies, looking at these infants at risk. Ten years ago, if you had talked about detecting early signs of autism at twelve months of age and interventions with infants, people would have been laughing.”

Funding
– Quite a few international initiatives are now focusing on autism research. How do you explain this special attention?
“Autism has had a very high profile for some time already with a lot of international collaboration around it. It is probably attracting a disproportionate amount of funding. This is partly because it is potentially important clinical science. So funders are investing in this kind of research because it looks promising.”

– There must be a sense of competition between research groups and between disorders?
“For sure, because you are competing for the same funding. There has to be competition: it is about public money that needs to be spent in the best possible way. But sometimes you get the funding through collaboration. The spirit between colleagues in the autism field is very open and collaborative though. International projects are often related and we are all obliged to keep track of what knowledge the other ones are developing. At this moment we are working very hard on EU-AIMS for instance, there are new initiatives by Jan Buitelaar in the Netherlands, such as the new Horizon 2020 funding for a project called Brainview, we are part of a new training network, et cetera. We all benefit from these initiatives and there is a lot of networking activity going on – in that way we also help each other along.”

Parents’ advocacy
– Autism research finds itself in a luxurious position: highly profiled and no lack of money?
“Indeed there is no lack of attention, neither in advocacy nor in funding. An interesting contrast between the autism field and the ADHD field for example, can be seen in the active involvement of parents’ advocacy groups. Across Europe and also in North America, there are a lot of parent groups – like Autism Speaks – who raise a lot of money and have managed to become politically very high profiled. Initiatives like Autism Europe and ASDEU, with Joaquín Fuentes, that got the Written Declaration on Autism signed in the European Parliament are unknown for other disorders.”

– Autism research is making big leaps ahead. Are clinicians aware that autism can be treated much earlier than a few years ago? What should practitioners do to keep up?
“This is a common pattern. First we have the challenge of building and consolidating the knowledge: how confident are we about what the early signs of autism are in the first few years of life? And how early can these signs be detected in some children? That is the science part. But then there is the education and the raising of awareness, which often requires specific initiatives. This takes the kind of things that Joaquín Fuentes is doing: meetings of Autism Europe, talking to the European Parliament and government servants who can influence mental health services. It takes reaching the senior psychiatrists and psychologists and then cascading the knowledge to practitioners.”