0

Question Time with Dr. Elizabeth Milne

Liz Picture

Dr. Elizabeth Milne

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.

 

5

The Autism Political Correctness Issue

A big issue many people have with is the idea that autism needs to be cured. Let me remind you, autism itself is a social, communicative neurodevelopmental disorder diagnosed purely through behavioural symptoms such as repetitive and ritualistic behaviours that are quite easy to accept in an open-minded society.  It is the co-morbid symptoms that really affect their ability to be seen as typical. These symptoms include epilepsy, depression, anxiety, sleeping abnormalities, sensory issues, Fragile X syndrome, ADHD and intellectual deficits. Do many of these sound familiar? Are there “cures” for them? Yes and yes.  Therefore, we’re not trying to cure their autism but merely the negative co-morbid symptoms!

After reading many posts on autism online, there is evidently a great public dissonance between the idea of accepting their child for who they are and their attempts at trying to improve their behavioural symptoms. It’s not one or the other; you can be both accepting of your child’s autism and also be working hard to find ways to help their symptoms. On the one hand, by improving the negative co-morbid symptoms, you’re also attempting to make them more typical and on the other, you’re trying to soothe their discomfort and show them how much you accept their unique personalities. Remember that weird kid in class? Did you accept them for who they were? That’s great if you did! How about the other kid who always self-harmed? Did you try to help cease their self-destructive behaviour? If it was your own kid you would! Letting them have their own personality is completely different from trying to stop their self-destructive behaviour.

Is it degrading to call someone low or high functioning?

For me, when I say low functioning, I refer to autistic people who cannot live independently, constantly self-harm, have intellectual deficits and cannot communicate well with others. There is no name calling here, just a way to communicate the necessary level of support needed. My family refers to Chris as low functioning, due to his inability to live independently, read and write, and communicate efficiently with us. The fact that Chris can spell and read and few words makes me think that even though he is 22 years old, with the right motivation, he can probably learn to read and write properly at some point. He is verbal although it is in broken English and I personally think he still has it in there. True, sometimes I think the label “low functioning” is unfair because I feel like he hasn’t been given the right interventions yet. But realistically, at this point in time, he is on the lower scale of the spectrum and needs a lot more support from us.

I’ve also seen many posts calling for Neurodiversity now, which is absolutely brilliant! However, there is no need to get so carried away with being politically correct all the time. It is difficult to be politically correct all the time. Everyone has opinions, whether they are right or wrong, it is up to all of us to politely educate them to look at broader perspectives. Autism is an incredibly heterogeneous disorder (and yes, some people don’t want it to be called a disorder… boy do I know…) and if I look at my brother it is anything but a disorder in clinical terms.

We have come a long way from calling autistics retarded, stupid and insane. While society has moved away from such name-calling, we still have a long way to go before everyone can actually feel included. For this to happen, it is important for everyone to get educated about Neurodiversity and learn how to engage with people with social and communicative difficulties.

#StopFightingStartEducating

neurodiversity