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.

 

3

Question Time With Elena Seranova

Recently, I’ve come up with a bunch of questions to ask people who’ve worked with autism or people who are researching it in order to get more insight on global opinions on autism. I’m hoping to continue this series and have more people share their stories. Today, I have a guest blogger – Elena Seranova!

Originally from Greece, Elena obtained a major in Psychology and got involved in parent consulting and biofeedback sessions to reduce stress in autistic individuals.


IJ: “How did you get involved with working with autism?”

ES: Back in 2011, I attended a healthcare conference in Copenhagen, Denmark and had the opportunity to meet Gail Wylie, a Canadian therapist. She is an author of many books on autism and introduced me to both holistic consulting and biofeedback applications that lead to stress reduction of autistic individuals. Since I was working with the same biofeedback device Gail had back in Greece, we extensively discussed the applications of it and how they can help in reducing repetitive behaviours and other autistic symptoms- mostly calming down the patient.

IJ: “What should researchers be directing their focus on more?”

ES: The multifactorial pathology of autism creates the need for an integrative approach in research. For instance, some of the autistic patients demonstrate remarkable improvement when the daily nutrition is improved (gluten products and sugar excluded). This is not the case with all the autistic individuals and the genetic factors of this differentiation need to be investigated.

IJ: “In your country, do you think that there is adequate or inadequate funding for care and research in autism?”

ES: Greece is currently a country with limited financial resources and the healthcare industry is heavily impacted by the economic crisis we are going through. Last year I participated in a charity organization based in Thessaloniki, Greece. We managed to raise and donate a thousand euros to the Adults Autism Shelter “Sunshine” in order to sponsor the purchase of some new furniture. Since autistic individuals have sometimes the tendency to present self-harming behaviours, this also includes the breaking of all kinds of furniture such as chairs, tables etc. However, this kind of initiative is limited in my country.   There is practically no governmental help for such institutions. Same goes for research. Greek universities currently don’t offer a salary for PhD students meaning that undertaking research means that you also need to work at least part-time to cover your expenses. This of course impacts the quality of the research as well.

IJ:” What can be done about this?”

ES: I believe that foreign organisations should be sponsoring research in regions where there is willingness to conduct high quality research. Awareness is an important part of the funding process so the first step to be taken is to raise it. Social campaigns need to demonstrate the urgency of finding new ways to cope with autistic symptoms; as the global statistics are rising and future generations might have to deal with pandemic rates of autism in the next few decades.

IJ:” What is more important, Acceptance or Awareness?”

ES: My opinion is that both are important and need to be present in today’s society. Awareness is necessary for supporting the scientific research progress and donations that result in a better life quality of some autistic individuals, especially the ones that live in shelters.

Acceptance on the other hand is primarily crucial in our day to day communication with autistics, whether it’s a relative, our child or a patient. Especially in young families, it is sometimes hard to accept the symptoms of ASD. This results in delayed diagnosis and a delay in any kind of therapeutic support. Moreover, when parents do not accept the fact that their child is different than other children, this leads to ignorance of the child’s needs and a poor parent-child interaction, which is already impaired due to autistic symptoms. This may sound strange but sometimes when working with autistic children and getting to know them better, when I see how their mother talks in front of them about their “condition” as they call it, I feel so angry. And as a result I’ll say that I don’t care about the acceptance of the autistic individuals in the society, I just struggle to make the parent understand how important for their children is the acceptance of who they are. The social acceptance is as well necessary, but the parental acceptance is the one that will create optimised daily conditions for an autistic child to be themselves.

12992110_10209663177358762_741889092_n

Elena working with Indigo Biofeedback in Greece.


~ If you are interested in reading more posts from Elena, please have a look at a her blog on www.elenaseranova.com