What we’re doing right (and wrong) on autism

As World Autism Awareness Week goes into full swing Dr Emma Gowen, a University of Manchester expert in the condition explains what more needs to be done to make autistic people’s lives better.


 

“As a researcher, I’m struck by how much more we talk about autism nowadays – but also by how many misconceptions still predominate. World Autism Awareness Week is a fantastic opportunity to talk about these issues and that’s been helped no end by the excellent drama on BBC 1, the A Word. Our project at Manchester, also aims to make an important contribution.

“The A Word does seem to reflect the difficulties that parents face after diagnosis, as support is so patchy and often poor: they are often left in limbo – with little or no support over decisions such as whether to be home schooled or not, and are often spoken to in professional terms that mean little to ordinary working people.

“Our project runs in partnership with Salfordautism, a local peer-support and advocacy organisation. During three workshops, we met many people who live with autism to discuss how academics and autistic people might work together to learn more about autism, resulting in a series of honest and revealing short films The films highlight misconceptions autistic people face – as well pointing us researchers to those areas which are important to autistic people themselves.

“Many people think that autistic people have extraordinary talents, but in fact, only at most 1 or 2 in 200 individuals can be described like that. Everyone has their own strengths and weaknesses, and that includes all autistic people.

“And while many people think the condition just affects children, it is simply not true: less than 25% of all autistic people are children and all autistic children grow up to be autistic adults. While over 75% of autistic adults are capable of and wish to work, only 15% are in full-time paid employment. And at least one in three autistic adults experience severe mental health difficulties due to a lack of support.

“And yes, women can be and are autistic, too. Officially, five times as many men than women are diagnosed with autism but research shows that autism spectrum disorders are vastly under-diagnosed in women, so the balance between the sexes may be much closer than that.

“Societies awareness of autism has increased, so that’s a good thing. Sadly, this can lead to the misleading impression that it’s on the increase when there’s no indication that it is any more or less common now than at any time in the past. What we are seeing is actually a result of changes in how diagnosis was carried out up to the 1980s – when autism was defined very rigidly and perhaps inappropriately. The definition has now been much improved by greater awareness of newer discoveries.

“There is also a growing understanding of the inappropriateness of the ‘medical model’ of autism, which tends to look for a cure, and uptake of the ‘social model’ which seeks to understand and accept everyone’s individuality: many healthcare professionals and most autistic people now seek to create a supportive environment in which autistic people can flourish. And that, most of all, is what I hope this week will get across.”

Academics and the autistic community to collaborate on research projects

The interdisciplinary group, autism@manchester are looking to work with the autistic community to improve the effectiveness and impact of their research. Autism is a lifelong developmental condition that affects how the autistic person makes sense of and interacts with other people and the world around them, often causing them, and those affected by them, considerable difficulty, discomfort and anxiety.

autism@manchester involves autism researchers from the University of Manchester, Manchester Metropolitan University and the NHS, as well as autistic individuals and parents of autistic children.  The group are concerned that the research they do should be relevant and of real advantage to those who live with the condition.  At the same time, many of those affected by autism feel disconnected from the very research that is supposed to be helping them, and voice concerns that researchers are not working on issues that are important to them.

This is why researchers from autism@manchester are very keen to involve those who live with autism in the research process and were awarded Welcome Trust Institutional Strategic Support Funding to hold a series of three interactive workshops with members of the autistic community during November 2015. The project was run in partnership with Salfordautism, a local support group who work in the community to support autistic people and those around them. During the workshops, the autism@manchester team met with those who live with autism to discuss how best to work with the autism community in developing, choosing and designing research projects that would have real meaning for autistic people.

Emma Gowen, one the lead academics on the project, concludes:

“This was a highly challenging and exciting project to work on. One challenge was that the researchers involved were from a wide range of research disciplines – so we had to address communication barriers between the researchers as well as between researchers and the autism community. In the end, it all worked brilliantly! Everyone involved was very open and generous with their time and we learnt a lot from each other. It was a very enjoyable and encouraging interaction. However, this is only the beginning – we need to use the findings to develop some longer lasting initiatives”

Findings are currently being analysed and written up and will appear here when finished (http://www.autism.manchester.ac.uk/projectsandfindings/welcometrustworkshops/)

Tuesday Feature episode 7: Dr Emma Gowen

After only seven episodes we’ve already seen an exciting array of research being carried about by Faculty members. From air Emma overseeing movement experimentpollution to immunology to Alzheimer’s, it’s fascinating to see the things were affecting.

This week, we speak to movement researcher Dr Emma Gowen. Taking a trip to her lab, it was interesting to see the experiments her team carries out. With tin cans full of beans and door handles stuck to the wall testing people’s motor skills, it was refreshing to see that great work can still be done without expensive equipment. Emma is co-director of the Body Eyes and Movement (BEAM) lab and also recently set up the exciting Autism@Manchester project. You should check them both out. She’s also faced some challenging personal circumstances, which make her achievements all the more impressive. More about that in the interview below:

Could you please describe your research, for the layman, in ten sentences or less?

I study how we make and control, or how our brains make and control, movements and actions in response to objects or people that we might see in the environment. This is actually quite important for survival. If you think about crossing the road, you’ve got to make the appropriate movements with your head to look at the cars moving. Then you’ve got to coordinate your body to get you across that road. Another example is in a social situation – if you’re interacting socially you might find that it’s useful to imitate somebody to try and increase the social rapport and liking of that person for you. But on the other hand, if you imitate them too much, that could annoy them. So you have to get the balance right. So this seems quite simple to most of us – how we move our bodies and control our actions. But the complexity of these actions and how we produce them really comes across when people have certain conditions. If you think about if you have a stroke, or people with Parkinson’s disease or autistic people, it really becomes more obvious how complex it is for our brains to control our movements.

How can your research benefit the people reading this blog?

In the last few years my research has turned more towards real world problems. I can give you one example. Most people when they hear about autism will know about the social interaction problems that autistic people have, but fewer people, including those in the research community, are looking at the motor problems that autistic people face as well. These can come across as problems with balance, difficulties with hand-eye coordination, and general clumsiness.

Even though these movement problems are very important, there are very few therapies at the moment. So at the moment I am trying to develop a motor therapy for autistic children. This involves combining my work on motor control in imitation with the Xbox Kinect. This is a new area for me – it’s involving a games company, a software company, occupational therapists, parents, and teachers. So quite an exciting project – very early days, but what we’d hope is that, if we can find some evidence that this motor therapy can help the motor skills of children with autism, they could then use this to help improve their motor coordination.

Can we ask how you first got interested in your research area?

Emma running eye movement test

I started off with eye movements. That was during my PhD. Then when I did my post-doc at Birmingham I broadened out into more general motor control, so eye-hand coordination for instance. It was also at Birmingham that I started my research on autism. I think autism is a really quite challenging but rewarding area to work on. Autistic people have many different aspects that affect them so they’ll have sensory perception problems, they’ll have the motor problems, they’ll have the social cognition problem. So you as the researcher really need to have a broad understanding of all these different disciplines. The other element is that my research really involves working with people. So rather than being in a wet lab, I actually invite people into a lab and we ask them to do a few simple things such as imitating some videos of movements. I enjoy working with people and I also enjoy understanding the autistic perspective of the world as well. It can be a quite refreshing view of the world and I sometimes think more people should actually try and understand what the world feels and looks like for an autistic person.

Do you have any science heroes? Who inspired you?

I’m going to slightly side-step that and say more about the volunteers and the general public. Over the years there have been many volunteers who have contributed to research. Healthy volunteers, but also those who’ve got disabilities or various conditions. Without their help we would know far less about the brain than we do now. It’s often that they come and help and they know that it won’t immediately benefit them, but it’s for the next generation. So that maybe we can develop more understanding of the brain which could lead to improvements in medical conditions.

Could you tell us a little bit about your interests outside of science?

I tend to like being outdoors. I like walking and wildlife watching, so I often go walking in the Peak District or the local area with a pair of binoculars. Also, I quite like gardening as well. But that can play havoc with holidays during the gardening season, when I can’t go on holiday because I’ve got all my veg growing!

How has working here in Manchester benefited your career?

We’ve definitely got some very nice facilities here and I’ve got a very nice lab. It has air conditioning, which is fantastic when you’re doing experiments with people! Also, I have Multiple Sclerosis (MS) and the Disability Support Office here has been very good. They’ve helped me access particular support that I need. For example, my MS tends to affect me in terms of fatigue – I can get cognitively and physically fatigued. I have to be really careful about how much I do in one day. The Disability Support Office helped me to identify a government service that allows me to get taxis to and from work a few days a week, which really helps. Before, it was always train and walking. That really impacted my fatigue levels.

So how has MS impacted your career in general?

I suppose having the MS and trying to be an academic at the same time can be quite challenging. As you’re probably aware, academics tend to work quite hard. Before MS I used to work weekends and evenings as well – and now I have to really make sure that this is confined to the week so that I don’t have a relapse and increase my symptoms.

In some ways in can be like having small children I suppose, except the MS won’t go away or grow up at the end of it. But a more positive aspect of having MS, I think, is that it’s given me balance and perspective. I think all of us could benefit from sometimes standing back for a while from a problem, such as a science problem that you’re trying to work out. Stand back from it and have a think and just have a bit more of a balanced lifestyle and you can often work through those questions and work out which ones are the most important – which ones you need to be spending your time on.

Well, what a nice inspiring thought to end this Tuesday Feature on. We definitely agree with Emma and it’s great to hear she’s overcome her own struggles to forge a great career. Thanks for chatting to us, Emma.  We’ll be with Ben Stutchbury next week. Ben’s a PhD student who has a pretty inspiring story to tell himself. See you next week.  Interview by Fran Slater. Photos and videos courtesy of Matthew Spencer