Today we’re hosting the Autistica Discover conference – bringing together scientists, clinicians, autistic people and their families to discuss the latest autism research discoveries. Sarah Harrop spoke to Professor Bhisma Chakrabarti about his work on understanding the features of autism – and why he doesn’t believe in diagnostic labels.
Autistica Discover is a big deal in the autism research world – it’s the largest research conference of its type outside the US. So what made the Autistica charity choose the University of Reading for their 2019 meeting?
Bhisma is co-hosting the conference with his Psychology and Clinical Language Sciences colleague Dr Teresa Tavassoli. He explains: “The University of Reading didn’t actually make a proactive bid – Autistica approached us. We already have a relationship through Teresa’s Autistica Fellowship, but I think it’s also because we have an autism clinic which is integrated with a research centre – and very few other places do that. Also we cover several very different aspects of autism research here – the social, cognitive, sensory and the language aspects of autism. So I think it’s also down to the critical mass of our research and our growing profile.”
People with autism often have difficulty understanding social signals and responding appropriately to them. Bhisma’s research aims to understand more about autistic people’s responses to social stimuli – such as a picture of people at a birthday party – or non-social stimuli like a picture of a cup. He does this by measuring things like speed of response, brain signalling, eye movement or the movement of facial muscles to frown or smile.
The other side of his research is to apply that research in the real world. Last year he completed an eight-year project funded by Autism Speaks USA studying 12,000 school children in one part of India. This was a major undertaking: all of the ‘gold standard’ autism screening and diagnostic tools had to be translated into the local languages. He then used this to study this large group of children and discover the prevalence of autism within that population.
From paper to iPads
That research was done using the traditional ‘pencil and paper’ method. But for the past three years Bhisma’s been leading a consortium to develop an app which can collect this data.
“The app will go well beyond the usual questionnaires and interviews with people that you’d use to collect data; it has different innovations to it. It can measure eye tracking using a camera, and even the movement of facial muscles using computer vision technology.”
A new five-year follow-on study in 4,000 children in India and Malawi is now underway to scale this early work up, funded with £3.7 million from the MRC Global Challenges Research Fund (GCRF).
Needs, not labels
Bhisma’s long-term vision is to move away from diagnostic labels such as ‘autistic’ and focus instead on what treatments and interventions each child needs.
“It doesn’t really matter what diagnostic label a child has. If they have social communication issues then they need to go to a social skills training programme, if they have motor skills problems they need to go for occupational therapy,” he explains.
“So what we’re trying to do with this study is to move to a ‘norm based’ model.”
“These days, for every child that’s growing up we have growth charts so we know how tall or how heavy the child should be and you can just map the growth curve. But we don’t have things like that for mental development. So we’re going to try and come up with these kind of ‘growth charts’ for motor function, attention and cognition, social preference.”
“Then, if we see a child is falling off the growth chart in some way then the red flags need to be raised and the child will have to go into some kind of intervention. That’s better than having to wait for a year and half to get a diagnostic label – by that time you’ve missed a window of opportunity to change a child’s future course. Early intervention is so important because the brain is so plastic.”
Worldwide, over 250 million children are at risk of not reaching their developmental potential because of adverse circumstances. India and Malawi have some of the most disadvantaged populations in the world; over 10% of all children aged 2 to 9 years estimated to have neurodevelopmental disorders, such as autism.
Most of these children don’t get any assessment of brain development or a clinical diagnosis when needed. Parents are often unaware of the developmental milestones children should be reaching, so they only seek clinical help when the symptoms start to interfere with daily life. But intervening early can dramatically alter the course of a child’s long term development.
A two-way street
Another aim of the study is to build research capacity in India by training a large number of non-specialists to collect the data using the app.
“This app would not be scalable if you needed clinical psychologists and psychiatrists to administer it because there are less than 4,000 of them in a country of 1.3 billion people. So the idea will be to train non-specialists like community health workers. They can then go out with tablet computers and collect all of this high level quite fancy data with the app in the children’s own homes.”
But Bhisma stresses that this transfer of knowledge is not the traditional one-way ‘white man’s burden’ but very much a co-creation model: “We realise what the challenges are and use local expertise and our expertise to co-create. So it’s not just building India’s capacity but our capacity too.”
The Autistica Discover conference is taking place today, 25 June 2019, at the University of Reading, hosted by Professor Bhisma Chakrabarti and Dr Teresa Tavassoli. Read the full programme here.
Professor Bhismadev Chakrabarti’s research group focuses on emotions, empathy, and autism and you can read some of their research papers here. It is part of the UoR’s Centre for Autism and the Centre for Integrative Neuroscience and Neurodynamics, within our School of Psychology and Clinical Language Sciences.
Several other major autism research projects are currently underway at Reading:
- Dr Teresa Tavassoli is carrying out a study funded by the MQ Foundation and Autistica looking at anxiety and sensory issues in 200 children with autism, following them up over time to see how these sensory issues develop.
- Dr Fang Liu’s European Research Council-funded research studies the relationship between music, language and autism, looking at the similarities and differences between language processing and music processing in the brain. Some people are unable to sing in tune from birth, which is thought to have a genetic cause. People with autism often struggle with appropriate use of voice tone, so Fang’s work is looking at the links between congenital ‘tunelessness’ and the features of autism. The work is split between Reading and China, because Chinese is a tonal language and looking at these research questions there allows exploration of how lack of perception of tone could have an impact on social communication.
- Professor Bhisma Chakrabarti has recently been funded by the Government of India’s flagship SPARC programme to help build capacity in one of India’s major labs in Kerala.The Inter University Centre for Biomedical Research is known for it expertise in molecular genetic research. Over the next two years, Bhisma and Teresa will help the IUCBR build capacity in measuring diverse autism related phenotypes. This combination of phenotypic expertise from Reading and molecular expertise from IUCBR is likely to open new frontiers in autism research for both labs.