{"id":18043,"date":"2019-06-27T14:34:48","date_gmt":"2019-06-27T13:34:48","guid":{"rendered":"https:\/\/research.reading.ac.uk\/research-blog\/?p=18043"},"modified":"2021-11-03T13:45:20","modified_gmt":"2021-11-03T13:45:20","slug":"moving-away-from-the-autism-label","status":"publish","type":"post","link":"https:\/\/research.reading.ac.uk\/research-blog\/2019\/06\/27\/moving-away-from-the-autism-label\/","title":{"rendered":"Moving away from the \u2018autism\u2019 label"},"content":{"rendered":"

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Today we\u2019re hosting the Autistica Discover<\/a> 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\u2019t believe in diagnostic labels.<\/strong><\/p>\n

Autistica Discover is a big deal in the autism research world \u2013 it\u2019s 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?<\/p>\n

Bhisma is co-hosting the conference with his Psychology and Clinical Language Sciences colleague Dr Teresa Tavassoli. He explains: \u201cThe University of Reading didn\u2019t actually make a proactive bid \u2013 Autistica approached us. We already have a relationship through Teresa\u2019s Autistica Fellowship, but I think it\u2019s also because we have an autism clinic which is integrated with a research centre \u2013 and very few other places do that. Also we cover several very different aspects of autism research here \u2013 the social, cognitive, sensory and the language aspects of autism.\u00a0 So I think it\u2019s also down to the critical mass of our research and our growing profile.\u201d<\/p>\n

Understanding autism<\/strong><\/p>\n

People with autism often have difficulty understanding social signals and responding appropriately to them. Bhisma\u2019s research aims to understand more about autistic people\u2019s responses to social stimuli \u2013 such as a picture of people at a birthday party \u2013 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.<\/p>\n

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.<\/p>\n

From paper to iPads<\/strong><\/p>\n

That research was done using the traditional \u2018pencil and paper\u2019 method. But for the past three years Bhisma\u2019s been leading a consortium to develop an app which can collect this data.<\/p>\n

\u201cThe app will go well beyond the usual questionnaires and interviews with people that you\u2019d 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.\u201d<\/p>\n

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 \u00a33.7 million from the MRC Global Challenges Research Fund (GCRF).<\/p>\n

Needs, not labels<\/strong><\/p>\n

Bhisma\u2019s long-term vision is to move away from diagnostic labels<\/a> such as \u2018autistic\u2019 and focus instead on what treatments and interventions each child needs.<\/p>\n

\u201cIt doesn\u2019t 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,\u201d he explains.<\/p>\n

\u201cSo what we\u2019re trying to do with this study is to move to a \u2018norm based\u2019 model.\u201d<\/p>\n

\u201cThese days, for every child that\u2019s 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\u2019t have things like that for mental development. So we\u2019re going to try and come up with these kind of \u2018growth charts\u2019 for motor function, attention and cognition, social preference.\u201d<\/p>\n

\u201cThen, 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\u2019s better than having to wait for a year and half to get a diagnostic label – by that time you\u2019ve missed a window of opportunity to change a child\u2019s future course. Early intervention is so important because the brain is so plastic.\u201d<\/p>\n

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.<\/p>\n

Most of these children don\u2019t 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.<\/p>\n

A two-way street<\/strong><\/p>\n

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.<\/p>\n

\u201cThis 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\u2019s own homes.\u201d<\/p>\n

But Bhisma stresses that this transfer of knowledge is not the traditional one-way \u2018white man\u2019s burden\u2019 but very much a co-creation model: \u201cWe realise what the challenges are and use local expertise and our expertise to co-create. So it\u2019s not just building India\u2019s capacity but our capacity too.\u201d<\/p>\n

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<\/a>.<\/em><\/p>\n

Professor Bhismadev Chakrabarti’s research group focuses on emotions, empathy, and autism and you can read some of their research papers here<\/a>. It is part of the UoR’s Centre for Autism<\/a> and the Centre for Integrative Neuroscience and Neurodynamics<\/a>, within our School of Psychology and Clinical Language Sciences.<\/a><\/em><\/p>\n

Several other major autism research projects are currently underway at Reading:<\/em><\/p>\n