Aspects of autism and neurodiversity

Regular readers of this blog may remember a couple of posts we wrote on autism and social change. Here’s a chance to find out more:

Aspects of autism and neurodiversity: a brief introduction for social change groups

Saturday 22nd September
7.30pm – 8.30pm
Old Music Hall
106-108 Cowley Road

Do you want your group to welcome diversity? Do you want to work together harmoniously?

Neurodiversity impacts on the way people see the world and interact. Understanding neurodiversity and autism can improve the way you understand and work with others in your social change groups and how you facilitate workshops and meetings.

The workshop will be facilitated by Caroline Hearst who was diagnosed as being on the autism spectrum in her fifties.

The event is being hosted by Seeds for Change. Please let us know if you plan to attend this workshop as Caroline would like to know numbers. Either email richardATseedsforchangeDOTorgDOTuk or call us on 01865 403134. If no-one answers please leave a message.


Autism and the social change group: Part 2

After the workshop I participated in at the end of March, I’ve continued a dialogue with Caroline from Insider Autism Training.

We spoke about ways in which the training could have been made more experiential. That led us to the question of “experiencing what?”. Experiencing autism is clearly not possible, and we agreed that there’s something distasteful about asking NTs (neuro-typicals as we’re known in autistic circles) to ‘pretend’ to be autistic. That’s not to say that there aren’t experiential activities that can help raise awareness. More on that below. The conversation homed in on 2 themes – experiencing alienation and empathy and led us to talk about diversity rather than solutions.

Everyone has some experience of alienation – feeling out of their depth socially or culturally, even if just fleetingly, for example that first day in a new job or at a new school, or travelling in a foreign country, or the first Christmas spent with a partner’s family. We can tap into those experiences to give people a sense of the difficulty faced by those on the autistic spectrum in reading the unwritten social signals others are fluent in. In doing so we can begin to get a feeling for the experience of the autistic. Of course this sort of fleeting alienation is not the same thing that those on the autistic spectrum experience. It’s not even close. NTs have the luxury of knowing that the new school/new job scenario is the cause of their anxiety.

Caroline has been playing with other activities:

“I ran a workshop the other day where I divided the  participants in groups of about 5 with where one of the group was sat with their back to the group, they then had to discuss a topic as a group. The aim was for the person with their back turned to experience some of what it is like to miss out on body language and the others to notice how differently they treated someone they knew without body language – it worked brilliantly –  the turned round person’s description of their experience (“I didn’t know when to say something”, “I could not judge pauses”, “I felt ignored”) matched almost exactly the difficulties autistic people have articulated about being in groups. The rest of the group confessed to being aware that they were ignoring the turned around person, or even referring to them as if they were not there, but that awareness did not enable them to change their behaviour”

Empathy is harder. Whilst it might be laudable to work towards NTs experiencing empathy with the autistic, empathy is itself a contentious issue in autistic circles. Talking about empathy and autism rings alarm bells because there is a widely held (and largely incorrect ) belief that autistic people are empathy-deficient. I’m assured that things are much more complex than this and that many autistics are over-empathic.

The temptation for many facilitators is then to try and ‘fix’ the problem when they encounter it in groups. But solutions are not easy and it might be best to try instead to hone awareness. There are some behaviours typical of autism that can exasperate others in a group. And whilst it’s not impossible for autistics to learn and modify their behaviour it’s not going to happen in the course of a 90 minute meeting. Nor should the modification of behaviour be one-way. The NT community has a lot of work to do.

That’s not to say there are no solutions. In the workshop we heard how for some autistics there’s a real need to express their thinking immediately, and patiently waiting isn’t realistic. One suggestion from a participant on the autistic spectrum was to find ways to allow people to write down their thoughts in the moment, and then bring them in when the flow of the conversation permits – a parking space flipchart, a stack of notepaper or post-it notes.
But thinking in terms of solutions could be a distraction from the real issue – tolerance of difference and diversity.

Caroline reminded me of the terminology “neurodiversity”. We’re familiar with other, more visible forms of diversity such as gender, race, physical ability, but there are invisible forms of diversity and autism is just one. It may be that we can’t ‘fix’ behaviours that cause neuro-typicals annoyance. Even to think that way labels those behaviours as ‘wrong’ in some way. What we can do is try to strengthen our tolerance and give neurodiversity the same credence and respect we would any other diversity issue.
Let’s finish on a short piece from Caroline which neatly brings some of these themes together:

“I heard a story from Ann about training a group committed to encouraging diversity.  Anne noticed a group member, Richard, behaved in ways that led Ann to suspect he was autistic.  Anne was surprised to see how the other members of the group cut Richard absolutely no slack.  It would not be exaggerating to say they shunned and excluded him.  The rolled their eyes when he spoke, did not acknowledge or respond to his contributions, but just continued the discussion as if he had not spoken.
Anne saw that Richard was dedicated to the work of the group, made reasonable points and desperately wanted to be included. Yet he was being exclude by a group of decent people who were vocal about how committed they were to diversity.  Anne could see that Richard could be irritating, he talked in a monotone, repeated points he had already made, picked up on tiny mistakes made by others and sometimes  interrupted others.
Anne felt very uneasy with the situation but was unsure how to address it.  She did not feel she could it would be helpful to state her take on the situation “It seems to me you have an autistic person here – this is an opportunity to respond appropriately and celebrate the diversity you already have within your group”.  If she voiced her perception of the situation in this way Anne would have been potentially shaming Richard, and adding to, rather than ameliorating his sense of alienation.
The reaction of the group to Richard begs the question of what they think they want to encourage by encouraging diversity.  Do they understand that diversity is more than window dressing, goes deeper than looking exotic but brings with it the need to engage with real differences and real difficulties.
Engaging with the challenge Richard’s way of relating brought to the group could have resulted in an examination of working methods.  A more explicit structure to meetings, the use of a “talking stick , a protocol whereby nobody could speak twice until everybody had had the chance to speak once and a summing up that acknowledged all contributions might well have helped.  It might have enabled Richard to be a more constructive group member and increased clarity about how the group was functioning.   Difference and diversity can bring a seam of richness to our endeavours, but for this to happen we need to be willing to question and continually adjust our ways of working, and engage with differences that are more than skin deep.”

More of Caroline’s writing can be found on her website. Many thanks to her for the sharing that has enriched this post.

Autism and the social change group

I spent the afternoon in a workshop on autism and social change groups. The trainers were all on the autistic spectrum (diagnosed or undiagnosed), as were several other participants. The rest was a motley crew of activists and activist facilitators like myself – or NT’s as I now know that we’re known (neuro-typicals). As well as the first hand experience we were able to tap, one benefit of trainers who were on the spectrum was seeing the significant differences in the way their autism presented itself to the group – a clear message that autism defies stereotypes or assumptions.

The big down side of the workshop was simply that it was too short. We were given a good theoretical introduction to autism, helpfully peppered with anecdotes and examples. We had a chance to work through a couple of scenarios and discuss group responses to difference. We touched on solutions to including those on the autism spectrum without alienating others in the group. What was missing was an opportunity to practice and embed the learning through experience.

One obvious piece of learning from the first half of the session was that the many implicit social rules that most of us take for granted are a source of significant stress for those on the autistic spectrum, many of whom simply don’t have an innate understanding of the cues and etiquette of social situations. Translate this to social change groups: What assumptions do we make? What processes, in jokes, roles and responsibilities are implicit? Time to make these things explicit if we’re serious about accessibility to those on the autistic spectrum. And if we make ‘rules’ explicit there’s a need to stick to them. Rules that are changed or broken lead to confusion. But being explicit about the rules doesn’t need to be difficult or lead to conflict. It was observed that it is possible (and necessary) to be explicit and polite.

The workshop raised other issues which sadly we didn’t have time to explore and resolve. Many of them, to me, are issues to do with diversity and not autism in particular

Once again I saw hints of the view common in activist/activist facilitation circles that hand signals are a panacea, a way of ensuring that we could guarantee equality of participation. We’ve critiqued hand signals before. Whilst, on balance, I advocate their use, without the co-operative values that underpin them, and without a genuine commitment to diversity, they don’t do all that we claim they do. I worry that it’s too simple to promote them as a solution to including autistic group members and helping avoid the alienation that “different” behaviour can cause (both in the person of difference, and in those struggling to deal with that difference). Yes, hand signals might provide a structure that reassures the autistic. But they’re a rule that we often need to break. It’s far too simple to say “we’ll take your contributions in the order you stick up your hands” or “If you put up your hand you will be heard”. What if the first ten hands that go up are all male? Do we really wait that long to break the rule and include a female perspective? What if I put my hand up for the 5th time? Do you really guarantee I’ll be heard when there are other people putting up their hands for the 1st time?

There was also a slight tendency to ‘dump’ the bridging of the gap between NTs and autistics on the facilitator rather than leaving the whole group better equipped, more tolerant and more understanding of diversity.

Another interesting conversation was about building group cohesion. This was the challenge set to the group: how to build and maintain group cohesion in a group containing someone on the autistic spectrum? Activist groups use socialising (fraught with implicit rules) as their main mechanism for establishing and maintaining group cohesion. But what if that doesn’t work for you? The alternative suggested in the group conversation was to build cohesion as part of the ‘work’ of the group. Another topic we didn’t have time to explore fully.

An interesting afternoon – more questions raised than answered, but that’s how it should be.

The trainers had elicited some thoughts from folk on the autistic spectrum who were involved in social change groups. Here’s one of the responses:

I was in various local groups in environmental issues… for many years I kept “trying harder”, thinking I would eventually fit in and/or be taken seriously. I wrote studies and tried to work with everyone. I wasn’t trying to please anyone in particular; just had my eye on the overall goals that seemed rational to me – justice, safety, etc. I quit when I found out about autism and realized I was different on a much more fundamental level that I had previously thought…

Other pre-workshop reading was also valuable, and I include it here. Happy reading.