Blog post contributed by Juliet Scott-Barrett and Louise McKeever about the SARG PhD/Early Career event funded by the University of Edinburgh Institute of Academic Development:

On the 21st of April 2017 a workshop was held for PhD students and early career researchers titled “Conducting Research in the Field of Autism: Ethics, Methods and Research Experiences”. With attendance from students and researchers from across Scotland the workshop allowed for detailed discussion of practical and ethical dilemmas. Juliet Scott-Barrett opened the workshop, engaging delegates in discussion about their current research and goals for the future.

Talks from Scottish Autism provided insight on two sides of the coin; Research-Informed Practice and Practice-Informed Research. This talk by Jill Ferguson and Joanna Panese provided delegates with information on their current research projects and how to take a practice-research approach to producing knowledge and developing services.

Kabie Brook (Autism Rights Group Highland) and Sue Fletcher-Watson (University of Edinburgh) gave a talk drawing on their expertise and experiences of autism research and the autism community. This included liaising with and learning from your autistic mentor and key considerations when explaining research to autistic people and families. They gave helpful advice regarding how to make research meaningful for autistic people and families, and how to meaningfully engage with autistic expertise in knowledge production.

The keynote speaker (Catriona Stewart) discussed autism research and ethics. Some important issues were raised such as:  ethical issues that have arisen in previous autism research, why it is ethically important to involve autistic people meaningfully in research, and how to address the issues relating to informed consent. Delegates left brimming with ideas relating to better research practice and how to work more closely with the autism community at all stages of research.

Many thanks to those who attended the SARG Seminar ‘Autism Continued: Adulthood and Ageing’ at the University of Glasgow earlier this year. We heard from a range of academic, practitioner and community member speakers, many of whom highlighted the current lack of research with autistic adults. Our speakers outlined their own recent work exploring key issues in this field – from neurology and cognition, to experiences of menopause and emotion, to developing our knowledge around palliative care.

The talks represented the varied ways in which knowledge in this field can be developed, from large cohort studies to individual practitioner-led case studies. Talks also highlighted the benefits of partnership working across different stakeholder groups.

It was therefore with delight that the seminar also provided us with an opportunity to announce that a partnership between Scottish Autism and the Scottish Autism Research Group (SARG) has been formed to have greater impact on autism research and practice in Scotland. The collaboration reflects the shared commitment between both organisations to develop excellent and meaningful research that informs good autism practice, which is valued by individuals with autism and their families.

We are looking forward to working closely with Scottish Autism over the coming months to maximise on the opportunities that this partnership agreement presents.

We are now quickly approaching our next SARG seminar —Autism continued… Adulthood and Ageing, that will take place in Glasgow on February 26th. Our previous seminar  started to examine the lifespan of autism, from embryo to adult in society. Now we further extend this lifespan to explore what happens in adulthood and beyond in the lives of autistic people.

Far are the days when autism was synonymous of “children with autism.” As documented in our previous seminar, research and practice have adapted to the reality of the grown-up child with autism and the diagnosed adult. Even in the popular imagination the term Autism is now also identified with young adults. However, there is much less awareness of the inevitable fact that people diagnosed with autism also become older adults, and they are confronted with the changes and challenges of older age. The forthcoming seminar tackles this critical aspect of the lifespan.
Even in mainstream psychology late adulthood and ageing were for very long a relatively neglected area of study. The focus was traditionally on the adult, assumed to have reached the crossing line of their developmental trip that started at the womb. But little by little psychology and its associated disciplines had to face the reality that development does not stop at the beginning of adulthood, and that our mind and behavior continue to change and adapt to new challenges in later life.

As in the typical individual, life and development also continue in the person with autism, with new challenges for the individuals themselves and the caretakers, and of course the researchers, that must help chart and understand how people with autism change in this crucial period of their lives. Our new seminar addresses this with a distinguished set of speakers who will tackle key issues in middle and late adulthood Autism: how cognitive functioning changes in the person with autism as they grow older, and how research on these and other issues may help improve outcomes for the  individual adult; how to deal with the impact of key biological events like the menopause, the end of life, and the challenges of palliative care, etc.

This is a very timely seminar, on a topic that will become more and more relevant and demanding in the future, and that only in the last years has started to be confronted to identify the needs and specificities of this phase of life in the atypical population with special needs.

blog post by SARG committee member Juan-Carlos Gomez.

As most people reading this post will probably already know, SARG recently re-launched with a one day event in Edinburgh. While SARG is principally a group led by researchers, for researchers, the event was attended by those who have an interest in autism research for a variety of reasons. Autistic people, those with autistic family members, and practitioners from health, education, social care and the charitable sector were all well represented. This variety made for a hybrid event, which feedback indicates was very successful.

One component of the day was specifically designed to level the playing field. Everyone attending split into small groups to discuss the topic What do we need to make Scottish autism research great? The first goal was to define ‘great’ – something on which we assumed different stakeholders would struggle to agree. However, as this report indicates, there was surprisingly high consensus on the most important goals of autism research. Nearly everyone wanted to see a focus on practical outcomes, delivering real benefits, measured accurately and defined in partnership with communities. The researchers departed a little from other groups – which isn’t to say they disagreed with these goals. They simply had other factors to weigh-up as well: aspects such as methodological quality, theoretical underpinning and interdisciplinary collaboration were all important. It is interesting to consider how many of those issues mentioned by researchers, but not other interested parties, derive from the structures in which most researchers are currently employed and rewarded. For example, Universities and funding bodies alike are putting great emphasis on interdisciplinary work, which bridges traditional departmental boundaries. It is unclear whether, for the autism community, this will result in ‘great’ research.

The second half of the discussion considered what resources might be necessary to achieve ‘great’ autism research in Scotland. Many good ideas were presented and are listed in detail in the summary document. Of note however was the strong emphasis on partnerships across stakeholder categories. It was widely acknowledged that such relationships are hard to achieve, requiring commitment and time on both sides. In light of the recent Action on Autism Research seminar series, drawing on organisations such as Autism Network Scotland, and with the resurgence of SARG, we feel confident that Scotland is on the right path to building meaningful and long-lasting connections. There was also strong recognition of the role of policy-makers and funders in the delivery of great research – groups called for more co-ordinated funding, transparency in priority-setting and specific funding to translate research into practice. All fantastic ideas, some of which are being enacted to some degree, as in this priority-setting endeavour and this UK-wide seminar series.

Overall, we identified seven main concepts arising from the discussion, illustrated in this figure. Four can be considered hallmarks of good, stakeholder-endorsed research. These are:

• Connections. Between researchers, the community and practitioners, in both directions.
• Insight:Researchers understanding what needs to be done ‘on the ground’. Practitioners and communities understanding constraints on 
research.
• Impact: Translation of research evidence into practice recommendations. Policy based on the cost of doing something versus the higher cost of 
doing nothing.
• Outcomes. High quality measurement of meaningful progress.

In addition, three challenges to effective, engaged research were also identified. These are:

• Scale: research tends to deal in ‘average’ behaviour in a group, but practitioners and community members need individualised supports
• Funding: the perceived priorities of major research funders seem rarely to correspond with community priorities
• Time: this resource is always in short supply and prevents practitioners from drawing on research evidence, researchers from sharing their 
findings, and community members from either taking part in research, or sifting through the myriad options being offered by commercial operators.

In consideration of these hallmarks of ‘great’ research, and bearing in mind the agreed constraints, we have the listed some recommendations for all those invested in autism research. However, if you’re too exhausted to get that far (and I wouldn’t blame you) they can be summarised as follows: keep in touch, do your bit, please be patient.

• All stakeholders in autism research – researchers, practitioners from multiple disciplines and settings, autistic people and their families – need to seize opportunities to engage with each other in order to promote great research, and research-based practice.
• Acknowledging the lack of time and structures to support collaborative working, the autism community in Scotland (including practitioners and researchers) should all try to make time to build relationships, share information and develop meaningful partnerships.
• Researchers should evaluate and share results regarding the experiences of participants in their research, considering aspects such as the acceptability of any assessments and the experience of all family members involved in an intervention study.
• Researchers in Scotland can be a team, working together to create a strong foundation for autism services and practice in Scotland, building on strengths and avoiding needless competition or duplication
• Non-research stakeholders are requested to respect the constraints placed on researchers by their employing institutions, ethics review boards, funders, requirement for scientific rigour, and available resources. All of these can make directly applicable research outcomes very hard to achieve.

The SARG re-launch is taking place tomorrow in Edinburgh, with the theme lifespan development: from embryo to employee. This title caused an unexpected (at least, according to the SARG committee) stir among the autism community.  To explain, we invited Kabie, Autistic Activist, of Autism Rights Group Highland, to share her thoughts on the SARG blog. This is her post.

I had been aware of SARG for some time but really always thought that it was for researchers only, an assumption that turned out to be quite wrong, maybe I’d fallen into a ‘them and us’ trap when there really wasn’t one.

Although interested in research I’m not a researcher myself, it’s interesting to keep up with what’s going on though; potentially research can have a huge impact on my life and that of my family and friends. This is one reason why it’s essential that we all work together and keep informed about what’s going on within research, and researchers about what’s happening within the Autistic community : as Liz Pellicano‘s A Future Made Together highlights, priorities of research carried out vs research that Autistic people and others would like to see don’t always match.

I joined the SARG mailing list and was happy to see that there was soon to be a relaunch event in Edinburgh. The title of the event though puzzled me: “lifespan development: from embryo to employee.”

My initial thought was that this was rather “off”, and immediately made me think of the usual ideas of financial productivity equating to humanity. Coming from an Autistic Rights perspective, I am used to seeing Autistic people being degraded and downgraded to the status of wealth consumers rather than wealth creators, just take a look at the work of Martin Knapp on The Economic Cost of Autism in the UK and link that to the current feelings of the British media towards disabled people often branded as expensive and a drain on the economy rather than fully fledged members of society.

To an outsider that may sound like a leap but to someone who belongs to a community still subjected to wrongful arrest, jeers in the street, allegations of being “workshy”, lifelong bullying and attempts from early infancy to change us and make us less of who we are – this really isn’t a leap at all.

I started to think that maybe this title was intentionally provocative, that the day may be an attempt to challenge ideas conjured from the title, given the nature of the event: not sociological, not autistic led, this seemed unlikely but possible because of the people behind it; I’d met some of these people and they really didn’t seem the type to come up with such an insensitive title.

I started to tell people about the event, other Autistic people immediately questioned me on the title and and echoed my first thoughts: what on earth was going through the minds of people who would think that ‘lifespan’, or anything worth saying about Autistic people ended at employment, and what about all of those that never become employees, who struggle to find work but don’t, who are self employed, retired or who are so segregated within our society would never be given the option to even consider trying to find work.

One person did point out that maybe the title had been chosen to scan well, something that sounded good. I had thought of that – at the back of my mind, but dismissed it.

So, I decided the best thing to do was to ask; I fired off an email to Sue Fletcher-Watson, someone who I already knew and was guaranteed to give a straight answer.

I decided to go with brief, and to the point and asked:

“When I first saw the (sub)title of the SARG seminar I was a little taken aback. After talking to others I realise I’m not the only one: embryo to employee. Is it intentionally provocative & chosen to illicit debate?”

Sue replied:

“Oh dear. No not intentionally provocative. Just reflecting the fact that we have a speaker talking about prenatal factors and another talking about employment and the others fit in between. Do you find it offensive? Please do explain.”

I was quite taken aback that the reply obviously meant that this really hadn’t been thought through, maybe not involving people who you’re planning to talk about isn’t such a great idea?

In my reply I thought it best to splurge out everything, the whole problem, exactly how I felt. It’s actually quite refreshing to be able to do that; to say what I thought knowing that I’d get an answer.

“Hi Sue

There are a few problems with it, your explanation makes sense but still the subtitle is problematic when put with that theme: Lifespan.

The implication of ’embryo to employee’ buys into the notion that worth is valued by a very narrow definition of productivity; that we are born to create wealth for others, that if we are not deemed to be productive members of society in a monetary way than we are of less, or of no value, we are erased from humanity and lack the position of being fully human by our societies.

This is a general point, relevant to all but most relevant to those who face barriers to employment, including disabled and specifically Autistic people. You know for yourself that unemployment rates are high for all disabled people and worse for Autistic people (although most probably not as bad as the published figures say but that’s another discussion).

Another problem with it is that it implies that employee is an end point. Many people don’t reach that point, some do but lose employment, some will never be employed.

“Lifespan” should surely cover what it says, not end when a prejudged norm of maturity is reached?

The autism machine talks a lot about productivity and employment. Employment is important but it misses the point that we are people, not commodities & should not be valued or measured as such.

Older people also feel excluded, that even if someone has worked what then when they retire? Or become ill, or become a carer etc etc Do they cease to be?

I really don’t want to get ranty, I think the above is enough to get the idea?

I think that the problem is magnified because this is viewed as a usual theme: talking about us whilst not really appreciating the reality.

I know that this isn’t intentionally to upset, although as I said I wondered if someone was making a point of drawing out the above themes?

Kabie”

Given that I ‘didn’t want to get ranty’ in hindsight I’m not sure I succeeded.

Anyway, always keen to enter into discussion Sue replied, (edited):

“Thanks for this – very interesting and another example of my unthinkingly applying my norms to others in a way which obviously doesn’t fit.

We are working on the basis that employment (in a broad sense – could be self-employed, supported jobs – something that provides enjoyable activity and stimulation which is rewarding and can confer a degree of independence maybe…) is something people want and society has a responsibility to make it available.

The word Lifespan is in fact very misleading because we aren’t looking at older age-groups during this seminar *….. in this seminar ‘lifespan’ actually means childhood to adulthood but not all of adulthood. This is sacrificing accuracy for something snappy I’m afraid.

I think all (SARG) members agree that there is no role today for a group of researchers consulting only amongst themselves without due regard to the perspectives and expertise of other groups.”

I was left feeling quite settled at the response and feel that I learnt something, hopefully those at SARG did too – which for me is the whole point. As I said I don’t know much about research but I do know that it can be helpful or damaging: obviously a vast oversimplification but that’s the nub of it.

So what are the lessons to be learnt from my point of view?

For us all:

• Always involve the people you’re talking about; we’re not moving away from silos of thinking quickly enough: none of us are.

• Say what you mean & mean what you say, really if you’re expecting people to second guess or trying to be snappy or shorthand then you’re going to hit trouble.

• When someone asks a question, or points something out as being problematic or insensitive then discussion rather than attack builds bridges: take note all of those who would prefer Autistic people didn’t ever talk back! (Clearly not something I can accuse SARG of thankfully).

• Always expect and be open to debate, it’s too easy to expect hostility because of previous experiences.

• Never forget that our own communities do differ in lived experience and expression, that’s a positive, don’t label it as a problem.

Going to events ‘about us’ is always a bit odd, often with an overload of ‘those people’ language and outsider views but I’m looking forward to it and no doubt I’ll learn something valuable – meeting and hearing others speak whether I agree or not is always a learning experience.

by Kabie, Autistic Activist, Autism Rights Group Highland

You can follow Kabie and Autism Rights Group Highland on twitter, or checkout the ARGH website.

* editorial note: the reason for this exclusion is that SARG hopes to hold a separate event specifically focusing on older adults in the future.

post by David Simmons, SARG Committee member.

It was in the Autumn of 2003 that I discovered the Scottish Autism Research Group. I had recently become interested in autism, having read Patricia Howlin’s book “Children with Autism and Asperger Syndrome” and Lorna Wing’s “The Autistic Spectrum”. However, as I wasn’t originally trained as a psychologist I had no formal academic knowledge of autism, and I hadn’t managed to find any local seminars to go to. By chance, a flyer for the next meeting of SARG alighted in my inbox (I can’t remember now whether it was from a circular or forwarded by a colleague), but I duly got the train to Edinburgh and went to my first ever research meeting on autism. It was quite an eye-opener for me! Evelyn, Katie, Maria and Juan-Carlos (the organizers) were very friendly and the talks very interesting.

Two things struck me at that very first meeting. One was the lack of a sensible neural theory of autism to complement the many cognitive theories that seemed to be flying about. The second was the large number of confusing acronyms. This was the time when I didn’t know my ADIs from my ADOSes and DISCOs! Gradually over the next few years of regular attendance at SARG meetings I began to pick up the lingo of the field and work out my own way into it. I remember particularly inspiring talks by such luminaries as Sue Leekam, Cathy Lord, Warren Jones and Declan Murphy complemented by interesting and thought-provoking discussion sessions and some useful networking. I became increasingly fascinated by the, at the time, rather neglected sensory aspects of autism and felt that I could contribute to the area myself. A few years later Frank Pollick and myself managed to get a research grant and a couple of PhD students working in the area, who also benefited from attending SARG meetings. A couple years more and we began to publish our first papers in the field. My first invited talk about autism was at one of the last meetings of SARG 1.0 in October, 2010. By then I had started to teach a final-year option course on autism and was increasingly involved in the field, and have now reached the point where my primary research focus is perception in autism.

Thanks, SARG, for being the inspiration for this change of research direction and I look forward to contributing to others’ research development in the field as a member of the committee of SARG 2.0!

We are really enjoying preparing for our SARG re-launch in February.  The preparations take some of us back to our first launch in November 1999.  We – Juan Carlos, Maria and I – held our first meeting in Dundee University with 12 people. We decided at first to take turns to present to give us some idea of each other’s work, and because we had absolutely no money.  We quickly ran out of presenters, and at that point decided to join the real world and go for funding.  From Maria’s kitchen at 1am (having co-opted Katie onto our mini ‘committee’), we promised ridiculous outputs – six seminars and a book – for the BPS £3000 award. No wonder they gave it to us! We were such a bargain, apparently.  However, turns out we couldn’t stick to the budget, went on a spending spree for European speakers, and had to get more funds from other sources hastily in order to complete the series.  But it was brilliant fun. We got so used to having cash for these autism research events, which increasingly felt like parties for our friends, that we pitched for the ESRC seminar competition and got that too.  I don’t recall that it made us less spendthrift, but it was harder to overspend, fortunately. By 2007 we had 130 members. It was wonderful to find so much support across Scotland and beyond (Oh – and we even got the book!).  Since then, David, Sue, Bonnie and Paula have joined us, adding a wealth of expertise, energy – and, hopefully, budgeting skills – to the new-look SARG.

by Evelyn McGregor