Asset-Based Research

Posted by Helen Kara

For me, one of the greatest developments in research methods so far this century is the genesis and expansion of asset-based research.

Up to the end of the last century, research was almost entirely based on deficits. What we studied were problems, lacks, difficulties, deficiencies, gaps. This is understandable: people generally do research to try to improve matters, so starting with something that needs improvement makes sense. However, we were missing a big trick.

Around the turn of the century, psychologists Martin Seligman and Mikhail Csikszentmihalyi founded the positive psychology movement. Before then psychologists had exclusively studied topics such as memory loss, criminal and deviant behaviour, attachment disorders, psychopathology and the like. The positive psychology movement chose to study topics such as happiness, resilience, well-being and so on, to find out what we can learn from people who are flourishing and how we might be able to extend some of that to others.

Organisational researchers David Cooperrider and Suresh Srivastva were taking a similar approach. They developed the method of Appreciative Inquiry which begins by looking at what an organisation does well and is proud of, and then considers how it can improve in the light of its successes. And researchers from various disciplines around the world have been drawing on Amartya Sen’s capabilities approach to consider what Indigenous and other marginalised people can and do contribute to their communities.

Asset-based research is also beginning to be used in other fields, including Autism research. I am proud to have made a small contribution to this process myself, through a journal article Aimee Grant and I wrote which was published in Contemporary Social Science last month. The article is called Considering the Autistic advantage in qualitative research: the strengths of Autistic researchers. Much Autism-related research has been conducted by neurotypical people based on a view of Autistic people as deficient. By contrast, in our article, Aimee and I demonstrate that Autistic people like us have a lot to offer to qualitative research teams. We have also formulated some guidance, for teams with a mix of neurotypical and neurodiverse people, to facilitate effective inclusive working.

I am delighted to say the article is open access so you can all read it! I am also delighted that it has generated a lot of interest, with over 2,500 views in its first three weeks. And I feel proud to have been able to make this contribution within nine months of my own Autism diagnosis. Though I should acknowledge that I couldn’t have done it without Aimee, who was an excellent collaborator. Also, we had fantastic support from the journal editors and the anonymous reviewers. If you are looking for a home for an article on researcher experiences and research methods, or would like to propose a special issue, I would encourage you to consider Contemporary Social Science. It is the journal of the Academy of Social Sciences, of which I am a Fellow, but you don’t need any links to the Academy to submit work to the journal. They publish four issues a year, of which only one is open access at present, but that may change in time.

Anyway, if you find our article helpful or interesting – or disagree with the points we make, because all reasoned debate is useful – then please let us know, either here in the comments or over on Twitter.

This blog, the monthly #CRMethodsChat on Twitter, and the videos on my YouTube channel, are funded by my beloved Patrons. Patrons receive exclusive content and various rewards, depending on their level of support, such as access to my special private Patreon-only blog posts, bi-monthly Q&A sessions on Zoom, free e-book downloads and signed copies of my books. Patrons can also suggest topics for my blogs and videos. If you want to support me by becoming a Patron click here. Whilst ongoing support would be fantastic you can make a one-time donation instead, through the PayPal button on this blog, if that works better for you. If you are not able to support me financially, please consider reviewing any of my books you have read – even a single-line review on Amazon or Goodreads is a huge help – or sharing a link to my work on social media. Thank you!

Coming Out As Autistic

Posted by Helen Kara

Regular readers of this blog may remember that I received an informal diagnosis of autism in July 2019. Initially, I didn’t plan to seek a formal diagnosis, but then I learned about the “lost generation” of autistic people, mostly women, who were not diagnosed in childhood because the way their autism manifested didn’t fit the diagnostic criteria which had been developed from observing some autistic boys. As a lifelong feminist, I decided I needed to find out for sure so that, if I did receive a formal diagnosis, that would, if only in a very small way, help to redress that imbalance.

So I went to my GP in August 2019, armed with a copy of Camouflage: The Hidden Lives of Autistic Women, an excellent graphic novel by Sarah Bargiela and Sophie Standing. I had also taken the AQ10 test and scored 9 out of 10. My GP was kind, understanding and knowledgeable; he told me he had been through the process with other people. In September 2019 he sent me a 50-question test which I completed and sent back, though parts of it seemed rather out of date (Q: “Do you remember all the phone numbers you use?” A: “I used to but I haven’t had to dial a number in years, have you not heard of mobile phones?”)

Then I heard nothing for a year. I suspect the pandemic didn’t help. By summer 2020 I was getting antsy, and an autistic friend of mine referred me to an autistic friend of hers for advice. We chatted on WhatsApp and my adviser said she was sure I was autistic. She suggested I read two books: Divergent Mind by Jenara Nerenberg and Spectrum Women: Walking to the Beat of Autism edited by Michelle Garnett and Barb Cook, to ‘find the fruits in my personal autism fruit salad’. This is an ongoing process, but so far I have identified:

A degree of alexithymia (impaired awareness of emotions)
Sensory processing problems (all sorts of ‘normal’ things I can’t stand: nightclub environments, labels in my clothes, jewellery hanging off me and clanking, the sound of a tap dripping, the feeling of most synthetic fabrics – I could go on)
Information processing problems (I have great difficulty in staying engaged with talk radio, audiobooks, podcasts etc; even if it’s something I want to listen to, I can’t concentrate and my thoughts drift off elsewhere, and I find TV boring)
Co-ordination problems (my balance is not good and I’m very clumsy; I need to investigate the proprioceptive and vestibular senses, and interoception, to see if I can figure out why).

Also I have a couple of the auto-immune health conditions which are common in autistic people – in my case, asthma and fibromyalgia. And there’s plenty else besides: literal thinking; ability to focus intensely on a task of interest; inability to remember left and right, or which way to turn a screw to tighten or loosen it; plain speaking; strong dislike for bright lights and loud music; repetitive thoughts (they can be really annoying); silent counting (that’s very soothing); very acute sense of smell (not always a blessing); and lots more.

My adviser also suggested I join a couple of Facebook groups for autistic women. She explained that self-diagnosis is accepted in the autistic community – I later discovered this is not least because some people in some countries can’t get an actual diagnosis, e.g. because it’s not covered by health insurance (oh I do love the NHS). So I joined the groups and found them hugely helpful, though ironically I haven’t been on FB in recent months, because I can’t stand the new design, because, yes, I’m autistic!

The assessment was done by the Adult ADHD and Autism Service of my local NHS Healthcare Trust. The process began in early December with a phone appointment which, to my surprise, was a battery of personal questions. (Nobody expects the Spanish Inquisition!) Tell me about your family, your early childhood, your schooling, your friendships… The woman asking the questions was very kind, but it was, as one friend said, like therapy without any actual therapy. Then the Service emailed me a form for ‘someone close to me’ to fill in, which asked about my ability to engage socially (not bad in some circumstances), whether I take things literally (hell yeah, gets me into all sorts of trouble), my response to changes of plan (noooooo!!), and so on. The form was completed over the winter holiday and sent back at the end of December.

Then on 22^nd February I had a video appointment with a mental health nurse. He told me the assessment was multi-disciplinary and that, although in this appointment I would only see him, he had consulted with his colleagues. Then he asked me another whole bunch of questions, some of which I had already been asked by the woman on the phone, and finally told me I am autistic. “There is no doubt,” he said. He also explained that they don’t give classifications, just a diagnosis, but I don’t care what kind of autistic I am, it’s enough to have a word to explain a whole lot of things I have spent my life being unable to understand.

Over the last couple of weeks I have come out in person to my family, friends, and colleagues. A few people knew I was going through the assessment; most didn’t. I know I have been extremely lucky that almost everyone reacted positively and supportively. Several friends said things like ‘I don’t know anything about autism but I know you and I love you and please tell me all about it when we speak’, which was fine by me. Many were genuinely interested, which was nice. And some colleagues floored me with the level of their support and care.

Now I am coming out in public. I am happy and proud to be autistic.

This blog, and the monthly #CRMethodsChat on Twitter, and my YouTube channel, are funded by my beloved Patrons. It takes me more than one working day per month to post here each week, run the Twitterchat and produce content for YouTube. At the time of writing I’m receiving funding from Patrons of $74 per month. If you think a day of my time is worth more than $74 – you can help! Ongoing support would be fantastic but you can also make a one-time donation through the PayPal button on this blog if that works better for you. Support from Patrons and donors also enables me to keep this blog ad-free. If you are not able to support me financially, please consider reviewing any of my books you have read – even a single-line review on Amazon or Goodreads is a huge help – or sharing a link to my work on social media. Thank you!

I’m A Lime Green Pencil

Posted by Helen Kara

lime green pencil I was lucky enough to spend two days last week helping with the Inside Out Autism conference at the University of Kent. This was a new university for me, on a verdant campus with trees and rabbits on a hillside overlooking Canterbury. The weather was beautiful, not that I saw much of it, as the main conference venues were two theatre spaces with no windows. No air-conditioning, either, so the conference was hot stuff in more ways than one.

The first day of the conference focused on autism and participatory research, the second on autism and gender. Around 50 people attended each day; some came for one day or the other, many for both. Most of those present were autistic, and the conference was wonderfully inclusive. Conference bags held fidget spinners, ear plugs, and stickers in green and red to indicate ‘I’m happy to chat but I might struggle to initiate conversation’ or ‘I probably don’t want to talk to anyone right now’, as well as more usual items such as notebooks, pens, Post-Its and copies of the conference programme. There were two seminar rooms upstairs for people who wanted time out, one designated as a quiet space and the other as a chat room. Hand dryers were turned off in the toilets and paper towels provided. People could, and did, dip in and out of sessions as they wished or needed to. There was a single stream of activity throughout, rather than multiple parallel strands, and most presentations were recorded which meant people could catch up later with anything they’d missed.

The quality of the presentations was excellent. None was longer than half an hour, and many were ten-minute ‘thunder and lightning’ sessions – either a thunderous provocation or a lightning report of relevant research. Presenters came from all levels of academia and beyond, including independent researchers and colleagues. I won’t give a blow-by-blow account of each presentation, because that would be boring, and anyway you can read the Wakelet – several of us were tweeting – and check out the presentations for yourself online. But, truly, all of them were interesting and engaging, and I find that is rare at academic conferences.

One session I enjoyed, that wasn’t recorded, was in fact one I facilitated. There was an exhibition of around a dozen thought-provoking posters and time dedicated for everyone to look at them. After that I asked people to write down any themes they perceived, or other responses they might have, from the exhibition as a whole on Post-It notes and stick them on a wall. Then at lunchtime I took all the Post-It notes and grouped them into categories on five pieces of flip chart paper. From memory, I think the categories were:

autistic identity and experience
difficulties and challenges
questions remaining
autistic community, and
positive aspects of autism.

Each piece of flip chart paper was placed across a couple of chairs with a marker pen, and there was plenty of space between them to move around for an open space session of go-as-you-please discussion. There was a helper at each place to encourage people to write down their key thoughts. People were tentative at first, clustering in the doorway or sitting on one of the few seats around the edge. Someone said, ‘We’re not going to do some kind of group thing, are we?’ I reminded them that they could dip in and dip out, and slowly people began to engage with the flip charts, each other, and the whole experience. There were some really rich discussions and the helpers did a great job of encouraging people to record the important points made. At the end we had a feedback session which stimulated some more very useful discussion – and lo and behold, those of us who had chosen to be part of that stage of the process were indeed doing a group thing! I would estimate around 25 people stayed and made themselves comfortable in the space in a variety of ways: sitting or lying on the floor, sitting on chairs or standing or leaning on furniture, facing towards the centre or away.

These discussions, and indeed discussions throughout the conference, held a great deal of nuance. People who used categories such as ‘autistic’ and ‘neurotypical’ took care to acknowledge that this did not imply homogeneity within those categories. In the day on gender, while there was rather more ‘male and female’ type language than I would have ideally liked, there were also several mentions of trans and non-binary people. People talked about class, and race, and intersectionality, as well as autism and gender.

The conference wasn’t perfect. One session should have had a trigger warning, and didn’t; several people pointed this out to the lead organiser who made a thorough apology at the start of the next session. One speaker had a slide which upset some audience members, who raised their concerns in a question. The speaker gave their reasons, apologised for the upset, and asked what they should do differently another time; another audience member made a suggestion, which was accepted. And here’s one of the things I love about autistic people: they move on. They don’t seem to mess about with egos and judgement like some other kinds of people. I find it relaxing to hang out with autistic people because I know that if they have a problem with me, they’re likely to tell me, and help me figure out a solution if I can’t come up with one by myself. And then we all move on.

There was also an unexpected personal outcome. When I first introduced myself at the conference, I said “I think I’m neurotypical, although one of my autistic friends tells me that I’m neither neurotypical nor autistic, so probably I’m in a category that doesn’t yet have a label.” By the end of the first day some of my new autistic friends were questioning this assessment. One person, who I will call Chris, told me that someone else at the conference, who I will call Hardeep, has a form of synaesthesia that enables them to distinguish between neurotypical and autistic people. Apparently, for Hardeep, neurotypical people have a kind of spiky outline, perhaps with diffuse colours, whereas autistic people have definite shapes and colours. I was interested to find out how Hardeep would perceive me, so the next day Chris introduced me to them to find out. “You’re a lime green pencil,” Hardeep said, with no hesitation or uncertainty. “Yep, you’re definitely autistic.” Chris told me there was no doubt in either of their minds.

That was a bit of a shock and it took me a while to process. I’ve been content for a while now to think of myself as neurodiverse, and I wouldn’t have a problem with being autistic. But it seems that to be autistic you need a thing called a ‘diagnosis’. Right now I can’t see what purpose one of those would serve in my life. Also, given that I’ve just spent a lot of time hearing about how difficult it is for women and girls to get such a diagnosis, it doesn’t seem worth the bother to try to obtain one for myself. (Though if I find my disinclination is contributing to the misdiagnosis of other women and girls, that could change my mind.)

One of the presenters said they preferred the term ‘discovery’ to ‘diagnosis’, a viewpoint which seemed to resonate with many people present. So I’ll go with that for now. I’ve discovered I’m a lime green pencil, which makes as much sense to me as any other label I’ve ever been given. More importantly, I’ve discovered that I am welcome in a community of people I respect, and that is worth more to me than any diagnosis.

This blog is funded by my beloved patrons. It takes me around one working day per month to post here each week. At the time of writing I’m receiving funding of $34 per month. If you think a day of my time is worth more than $34 – you can help! Ongoing support would be fantastic but you can also make a one-time donation through the PayPal button on this blog if that works better for you. Support from Patrons and donors also enables me to keep this blog ad-free. If you are not able to support me financially, please consider reviewing any of my books you have read – even a single-line review on Amazon or Goodreads is a huge help – or sharing a link to my work on social media. Thank you!