Today’s post is an interview with a researcher in autism. Dr. Elizabeth Milne is a lecturer at the University of Sheffield and the director of Sheffield Autism Research Lab (ShARL). Liz’s work involves a great deal of visual psychophysics, computer-based paradigms and psychometric assessments. Along with her team of researchers at ShARL, Liz aims to have a positive impact on the lives of individuals on the autism spectrum through investigating the neural underpinnings of atypical behaviour and cognition. ShARL also conduct a seminar series called ‘Distinguished Speakers in Autism’ and if you live around Sheffield and are interested in this please take a look at their website (ShARL). The views expressed here are her own and not necessarily those of the University.
IJ: How did you get involved with work in autism research?
EM: In 1999 I took up a job as a research assistant with Dr John Swettenham at UCL. We were working on an interesting project looking at attention in children with ASC. My intention was to use the job as a stepping stone to clinical training so that I could work in a more applied setting, but I became hooked on research. It is a privilege to have a job where it is possible to discover something entirely new, especially something that has the potential to improve understanding and awareness of ASC. I ended up studying for a PhD with John and never looked back. After I finished my PhD I moved to Sheffield University to take up a lectureship and set up the Sheffield Autism Research Lab in 2010.
IJ: How has your work impacted the ASD community?
EM: That’s a difficult question to answer, and in many ways I’m probably not the best person to answer it. I hope that the work I’ve done to bring public lectures on autism to Sheffield has had a positive impact on the ASC community. My initial motivation for starting these public lectures was to create a forum where people with ASC and their families, friends, clinicians, teachers etc could come together to share ideas and hear about latest developments in autism research from international experts. However, with input from Dr Richard Smith of the Sheffield Adult Autism and Neurodevelopmental Service, this lecture series has evolved and has now become a forum for adults with ASC to speak about their own experiences. Videos of most of these talks are available from YouTube. One of the talks – from a woman with Asperger’s syndrome who talked about her experience of being diagnosed with AS at the age of 46 – has been viewed over 16,000 times
IJ: What should researchers be directing their focus on more?
EM: This is an interesting question and something that a lot of people have strong opinions on. Personally I wouldn’t want to dictate what other researchers should be focussing on. There are a lot of people researching autism around the world and I don’t necessarily think that one research area is more important than another. The fact that so many diverse ideas and topics are being addressed means that we are more likely to identify something that can really be useful.
It’s certainly true that we understand far less about the genetics and neural aspects of autism than we do about other neurological conditions. Therefore, from a medical perspective, understanding the biological basis of the condition is important if we want to be able to provide better intervention and support. Currently, diagnosis of ASC is based on behavioural characteristics only, and these behavioural characteristics can vary a lot between individuals and also within individuals at different times (e.g. behaviours can be very different when under stress). Developing a clearer understanding of the biological basis of ASC would help to provide more objective ways to diagnose ASC. Getting a better understanding of what ASC actually is and whether potential subtypes of ASC may exist is an area that I personally think is worthy of research focus. Also understanding how ASC is expressed and understood in different cultures is important.
IJ: In your country, do you think that there is adequate or inefficient funding for care and research in autism? What can be done about this?
EM: I do not think that there is adequate funding for care and research in autism in the UK. There is a clear lack of services and support which is evidenced by the long waiting list for diagnostic assessments and the paucity of support available post-diagnosis. The problem runs deep, and there is no magic bullet that can put this right at the moment. Until we have a government that has a social conscience and is willing to increase taxes and pay for public services again then I’m afraid I don’t anticipate this situation getting better any time soon.
IJ: What is your opinion on neurodiversity?
EM: If, by neurodiversity, you mean the term coined to describe conditions such as autism in the context of normal variation in the human genome, then my opinion is very positive. Promoting inclusion, acceptance and respect for conditions such as ASC is important, not only from a human rights perspective, but also in terms of facilitating improved quality of life for people with ASC. In addition, the concept that neurological differences in autism should be recognised as any other human variation chimes with some of the findings coming out of my recent research on autism in adulthood.
However, the diagnosis of “Autism Spectrum Disorder” encompasses people with a very varied set of traits, strengths and difficulties, and not everyone with ASC identifies with the concept of neurodiversity. This relates to my answer to the earlier question about where research should be focussed right now – understanding the heterogeneity of ASC is very important.
IJ: What is your current project about?
EM: One of the great things about working at a University is that you get to work with talented research students, who provide energy and enthusiasm that enable you to work on a number of projects. Currently I’m running projects looking at heterogeneity in ASC, sensory issues in ASC, and neural overlaps between ASC and ADHD. This year I’m lucky enough to have a Fellowship from the British Academy which allows me to spend a year working on a project investigating ASC in adulthood. I’m looking at a range of things in this project including quality of life, and the way in which the different traits and symptoms of ASC manifest across the entire population and relate to brain activity.