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Question Time with Dr. Elizabeth Milne

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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.

 

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Rod and Bev Wilson- The Special Needs of Caregivers

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Rod and Bev Wilson Speaking at St Andrew’s Autism Centre, Singapore

Last weekend Rod and Bev Wilson gave a talk at the SAAC (St Andrew’s Autism Centre, Singapore) and shared their experience on having needs as a caregiver. The couples’ adopted daughter, Jessica, is now 29 and working at an autism friendly company in Vancouver. Diagnosed with hydrocephaly, high functioning autism, frontal lobe damage and precocious puberty, which began at the age of two, Jessica did not have not have an easy time growing up and neither did her parents. Looking after a child with extremely violent behaviour came with a heavy emotional and physical price; which Rod and Bev addressed in their talk. Here are some highlights from their talk on The Special Needs of Caregivers of Those with Special Needs: 

Our special need to embrace the mystery of the situation-

  • We as society have a need to turn mysteries into puzzles that can be solved because maintaining the illusion that we can explain everything gives us the upper hand. However, pain requires us to reject both religious and scientific answers and instead embrace the mystery our culture so fervently resists.  (Palmer, P :Let Your Life Speak). There is much pain in bringing up children with disabilities but our own sanity calls for us to occasionally give in and embrace the mystery surrounding the issues.

Our special need to embrace the true meaning of disability or special needs-

  • Just because someone is talented by the standards set by society doesn’t mean that the person who isn’t does not have dynamic potential for intellectual functioning. (Kaufman, S.B. Ungifted: Intelligence redefined)

Our special need to understand cure and solution-

  • As a professor first and caregiver second, it took some time to understand that there was no need to constantly try and fix Jessica. Respecting her for who she is, was difficult to stomach, but would inevitably lead to less stress on both the parents and child.

Our special need to understand the true nature of stress and deal with our own vulnerability-

  • As humans we have limited resource for adapting to stress and after repeated demands, adaption energy is depleted leading to the acceleration of ageing and illness. Rod and Bev ran out of energy soon enough and it nearly led to a divorce, thankfully couple therapy brought them back on the right track. One must remember not to undervalue themselves and overvalue doing things for others as this could lead to depression or worse.

Our special need to cope with the insensitivity of others-

  • Not everyone will be able to put themselves in your shoes and while we can be civil towards them, there is nothing valuable in keeping them in your circle.

Our special need to keep going-

  • Building a tolerance for ambiguous and uncertain situations enable you respond while to stress caused by unforeseen circumstances. Having spiritual values also assists in pointing you in the right direction whatever medium it may be.

Rod Wilson is a professor of counselling and psychology at Regent College, Vancouver and authored Counselling and Community and How Do I Help A Hurting Friend and co-authored Exploring Your Anger and Helping Angry People. 

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NeuroAwareness Vlog Series- first vlog post: What is Autism?

So guys! It’s been nearly 2 years since I first posted on this blog and now that I’ve graduated from my masters I think it’s time to do more exciting things to get autism awareness out there. You may have noticed nowadays (it’s 2017!?) people tend to have short attention spans and only have time for mediums conveying quick information, mainly in the form of videos.  A good friend of mine, called Leon who vlogs about “Escaping Brexit Britain” (Link), suggested I start vlogging alongside my posts. I’m a pretty shy person, but I think he’s right. So here’s my first vlog- a basic intro into what I’ll be doing and starting off with the topic of “what is autism”. I’d love to know what you think!

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Happy 23rd Chris!

First check in for the new year! Today is Chris’s 23rd birthday but unfortunately I’m away in England again so I only had the chance to join in on webcam. I did however visit him over Christmas, and I was thrilled to find how chilled out he was compared to the last time I saw him in the summer. I got him a (cheap) watch that he wanted for Christmas but I think, it’s like he knew it was cheap, and he just gave it back and asked for another one! Cheeky bugger. Anyway here’s a video of him blowing out the candles! Happy chappy!

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How to Manage Challenging Behaviour in Autism

I attended the AEcongress a few weeks ago in Edinburgh and I have to say I had a massively eye-opening experience. It wasn’t just about the presentations. It was about meeting people affected by autism from all over the world, be it through their work or through having a relative with autism. My trip was actually sponsored by the JiM foundation (Hansel and Gretle foundation) in Poland which I am very grateful for!

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Bo Hejlskov Elvén- Author of No Fighting, No Biting, No Screaming.

One of my favourite presentations from the conference was by Bo Hejlskov Elvén, a clinical psychologist from Sweden. Elvén lectures and researches how to deal with challenging behaviour in children and adults with autism, ADHD or intellectual disability.  I noticed that most of his videos online were in Swedish, so I’ll present what I learned during his talk in this post. I found that it gave valuable insight on not just dealing with my brother’s meltdowns but understanding how or why they were triggered.

The main idea is that challenging behaviour can be solved by “Reciprocal Problem Solutions”.  This means that we need to be able to put ourselves in their shoes no matter how difficult it may seem. Moreover, we need to be able to manage behaviour without elevating it into the tipping point of a meltdown. Old parenting techniques such as punishments and reward systems don’t necessarily work on someone with an inability to be reasoned with on top of their challenging behaviour. Elvén gave an example of working in an autism home- “when a client suffers a tantrum and wrecks the furniture, we must ask ourselves, who’s being paid to clean up this mess? The support staff right? Not the client! They are in no position to control themselves due to their disability. Staff, on the other hand, are being paid for this so they can’t try to make the client clean up the mess.” How does this apply to parents dealing with challenging behaviour? Well, we still need to remember that they are unable to understand things like we do, things we deem ‘normal’.

In my previous post I mentioned that the mirror neuron system is still working in autism. All children possess the ability to mirror affect. We yawn when others do. We feel more negative around a depressed person. We feel happy around happy people. This is called Affect contagion. Use this knowledge to help put yourself in an autistic persons’ shoes.

Here are several pointers I jotted down from Elvén’s Low Arousal Approach to avoid hitting the tantrum tipping point. I also added a few examples about my experiences with my brother Chris. Indeed many of them may see straightforward, but sometimes a little reminder helps:

  • Keep Calm
  • Avoid prolonged eye contact: We all feel uncomfortable with too much eye contact. Imaging what they will feel. Even when my Chris is happy I see him getting uncomfortable when I start staring at him.
  • Speak in a calm voice without jaw tension
  • Use Distractions
  • Keep your distance. Chris will run further away the more I follow him.
  • In fact, step backwards when you place a demand:

– “I often meet staff who complain about service-users who hit, spit at or kick them in demand situations. A simple method is to step backwards when you issue a demand, such as: “Put on your shoes”. I worked with a child with Asperger’s syndrome, who three to five times every day attacked staff in demand situations. When they started stepping just a couple of steps backwards as they issued the demand, and then turned and walked away the behaviour disappeared. His ability to do as they demanded increased because they didn’t stay to check on him or apply psychological pressure. The strategy to step backwards killed the challenging behaviour and has improved daily life for both the child and staff. “

– Interview with Bo Hejlskov on JKP.com

  • Don’t face the person directly. Calm posture tilted 45 degree angle (not so menacing and confrontational).
  • If possible, sit down when the individual is agitated. They’ll notice that you’re not being confrontational.
  • Avoid marked body language.
  • Make sure your calmness is contagious.
  • Let them throw a tantrum. They are in effect learning how to calm themselves through throwing a chair, or some other object. When we are angry when we were kids we threw furniture, that was how we learned to calm (at least I know I did). We Don’t do it anymore (well mostly).
  • Avoid touch with tense muscles. If they have grabbed you, loosen your muscles, you are harder to grasp then.
  • Use the person’s own movement when grabbing their arm. Follow their movement upwards when they are about to hit someone. It’s easier than when they have moved their arm downwards
  • Evaluate in order to change – divert their attention. Make some hot chocolate to calm them. (this is not reward conditioning at all!) They don’t learn that. They will learn to be calm now, episode over.

So here’s what I managed to get out of the talk. Would be great to hear what you all think!