Scottish Autism, a charity offering services, support and advocacy for autistic people across Scotland, held its 2019 annual conference in the Grand Central Hotel, Glasgow, on 14 November. I was fortunate to be supported by generous Ko-fi crowdfunders to attend the conference and live-tweet the event. This post is based on what I tweeted on the day. (As in my tweets, I have referred to everyone using their first names rather than adopting a formal academic style.)
You can also read my thoughts on attending a conference like this for the first time, from a personal perspective.
The conference, subtitled Innovation in autism practice: the future is here, opened with a brief introduction by Charlene Tait, Deputy CEO of Scottish Autism, who then handed over to Wendy Ferguson, a young woman diagnosed as autistic two years ago, who read her personal poem, Mentoring magic, to a captivated audience. She concluded by saying:
‘Let’s focus on what autistic individuals can do, and not just on what they can’t. Who knows what might happen next!’
Before lunch, there were three keynote sessions and one seminar stream. Lunch was followed by a fourth keynote, a second seminar stream, and two further keynotes. At the end of the day, Joseph Long, Research Manager at Scottish Autism acted as an ‘interlocutor’ and gave us his summary of the day’s proceedings, before CEO Dorry McLaughlin wrapped things up.
Embracing autistic identity
Sara Jane Harvey, perhaps best known as Agony Autie, gave the first keynote of the conference, on embracing autistic identity. She focused in particular on stimming and its importance for autistic expression. She asked why autistic people stim and what we consider socially normalised ways of being.
Autistic community is important. For Sara, her autistic identity was inaccessible to her until she had her son. When her son was diagnosed as autistic at 23 months, Sara found herself grinning because she saw his unique characteristics as identity outside of pathology, and she saw in him what she had hidden.
Stimming, including flapping, echolalia, rocking, licking etc. is used by autistic people for regulation of the sensory system, regulation of emotion, alleviation of cognitive overload, and communication of needs, as well as for sheer enjoyment. Holding in stims is harmful, said Sara.
Everybody stims, but autistic people sense the world differently. Responding to sensory input by stimming is normal and necessary for autistic people.
Sara talked for a bit about sensory issues that are common to many autistic people before demonstrating some stims of hers including stim dancing, something that she has made visible online through a number of YouTube videos.
She talked about autistic social groups – yes, autistic people can be social! Autistic people need to set the parameters. We need safe spaces where it’s OK to be ourselves.
If an autistic person in crisis or distress acts in a non-neurotypical way, it’s perfectly normal, and yet we are so often treated as though there is something wrong or even as though we are less than human.
It was really inspiring to see Sara ‘dropping the mask’ on stage and doing what comes naturally to her, without concern for what people might think, based on neurotypical norms. This is exactly as it should be. Being taught that we cannot self-soothe goes against our fundamental human rights, said Sara.
The double empathy problem
He began with a little history, starting with quotes from Socrates (on divining people’s motives) and Hans Asperger (on autistic people not being part of society!).
In the 1990s, various psychiatrists had theories about ‘what was wrong with Damian’. He tried making sense of himself and got interested in sociology and philosophy. Being isolated from autistic identity and community, he was unaware of the term ‘neurodiversity’. But after the birth of his son and having read books by people like Jim Sinclair and Claire Sainsbury, he began to realise that he was autistic.
He realised that while autistic people may have difficulty empathising with non-autistic people, the converse is also true. In particular he noticed that people supporting autistic children failed to understand them to at least the same degree that the children failed to understand those around them. Double empathy. Connecting with other autistic authors, he was encouraged to publish his first academic paper in 2012.
What is empathy anyway? It is perhaps a convenient illusion, suggested Damian, more to do with language and a sense of shared cultural understanding.
Lynne Cameron (2012) talks about ‘dyspathy’ and the ability to tune out other people’s emotions, which would otherwise leave us perpetually exhausted. Autistic people may lack this ability to turn off others’ emotions.
Dinah Murray et al. (2005) point out that attention is a scarce resource and that autistic people may have ‘monotropic’ attention strategies. Predictable stims in front of our eyes, for instance, can create an attention tunnel or flow state.
Damian went on to talk about embodiment of expertise and the theory that this is social (Harry Collins and Robert Evans, Rethinking expertise, 2007). In autistic people, there is the sociality of an ‘outsider’.
Damian noted that we can’t learn social skills by being presented with explicit instruction: ‘Much social skill or behavioural training with autistic people [is] predicated upon breaking down such social information into explicated strings of information which does little to help autistic people adjust to the changing flux of negotiated socially constructed realities.’
There has been much work showing that autistic people appear to have a greater affinity with other autistic people. See, for instance, Catherine Crompton’s recent study using the ‘telephone’ game. This was presented as part of a virtual symposium at INSAR 2019, and more informally in a series of YouTube videos.
Dimitris Bolis (2017) talks, from a neurological perspective, about the dialectical misattunement hypothesis – essentially the double empathy problem by another name.
Damian concluded by talking about cultural imperialism (with ableism and mansplaining as examples). He coins the term ‘psychsplaining’ in reference to the power relationship between psychological professionals and autistic people.
James Barrett, lead clinician at the Charing Cross gender identity clinic (GIC) in London, gave the second keynote, looking at some of the interactions and intersections between ‘gender incongruence’ and ‘autistic spectrum conditions’.
For a long time it has been observed that people who present at gender clinics show a high prevalence of autism, said James. This had been observed even before adult autism was recognised.
‘Non-heterosexuality’ is also much commoner among autistic people, and James suggested that it is useful to flag this up to parents of autistic children. (It wasn’t quite clear to me why that should be useful, though!)
Something like 9–13 per cent of people attending the Charing Cross GIC are autistic (or potentially autistic), a much higher proportion than the estimated 1–2 per cent in the general population.
James also talked about the underserved intellectually disabled subpopulation. Gender incongruence in an institutional setting is frequently poorly handled and conflated with sexuality. However, people are less likely to be harassed and bullied if they’re able to dress in the way they feel comfortable. They’ll hold their head a little higher and present more confidently.
James put forward the idea of rule-following, mechanical approaches to social conformity, which may lead to some autistic people not showing early signs of gender incongruence. Information paucity (‘where do you find girl’s clothes?’) is another factor.
I was disappointed to see ‘ROGD’ (‘rapid onset gender dysphoria’) mentioned on a slide, even if it was in quotes. This fictitious diagnosis concocted by transphobic parents really doesn’t deserve to be aired. (‘Sudden onset gender dysphoria’ also appeared on a later slide, without quotes.)
I found James’s talk unsatisfactory in many ways. To an autistic trans person’s ears, much of it felt dehumanising and disrespectful. In the remainder of his time, James went on to discuss etiological theories including Simon Baron Cohen’s ‘extreme male brain theory’ (but what about trans women?), the ‘oddness’ of autistic speech and determiners of male/female speech attributes (not pitch alone), the commonness of BDSM practice among autistic people (because it’s rule-based??), and transition regret.
Of the four seminars on offer before lunch, I chose to attend Damian Milton’s talk on the Participatory Autism Research Collective. I chose to conserve energy at this point and didn’t tweet very much.
Damian spoke a little about the social model of disability, adopted by neurodiversity proponents – which is not to say that autistic people are not socially disadvantaged in various ways.
Journey to self-acceptance
Dean Beadle gave the post-lunch keynote, talking humorously from personal experience about autistic identity and the path to self-acceptance. He apologised from the outset that his talk would be positive!
It was pretty hard to convey Dean’s wonderful sense of humour in a series of tweets – I really just wanted to sit back and enjoy the experience! But he did make some serious points in the midst of it all. For instance, he talked about the rise of behaviourism, which is a real concern just now.
Dean discovered he was autistic in Burger King when his mum let it slip! She’d been trying to protect him from seeing himself as different, but he already saw himself that way, and realised that the problem was everyone else, not him!
I loved Dean’s realisation that he could say ‘no’ or ‘as much as I’d love to I can’t’. We all have needs, and shouldn’t put pressure on ourselves to do things that just aren’t worth it.
We don’t accomplish things despite being autistic. Our achievements come from the same brain as our difficulties. What we accomplish is because we are autistic. Functioning labels and the use of qualifiers like ‘mild’ and ‘severe’ miss the point. We’re not cheese!
Dean made a really impassioned and well-put argument for identity-first language: he is a person with a (Primark!) jacket; he can leave it behind; he won’t always have it.
Finally, Dean spoke about the importance of autistic community and suggested a number of people to follow on Twitter (all of whom I was already following!): Rhi Lloyd-Williams, Gill Loomes, Jon Adams, Shona Murphy and Emily Lovegrove. (I had the pleasure of meeting Gill in person recently too.)
Autistic anxiety and joy
I stuck with Dean Beadle for the next seminar session, again from a choice of four.
Autistic people arguably have too much imagination! Non-autistic people filter out likely from unlikely events automatically. Autistic people (or at least some of them) are only reassured by certainties. Grey areas of life induce anxiety. We need better than 99%.
Dean told a really relatable story about a boy who was anxious about getting things wrong at school, to the extent that he needed to have all his work double-checked by the teacher.
Anxieties are real. But many can be addressed by dealing with facts and evidence.
Autistic joy is the flipside of autistic anxiety, though it’s little talked about. We should celebrate and make the most of our ‘special interests’, be they Dr Who, Toyah Wilcox or Thomas the Tank Engine!
Dean finished by talking about his love of doors. Yes, doors. Not all doors, though – he’s ‘not a pervert’!
The National Autistic Taskforce
The National Autistic Taskforce (NAT) aims to provide a stronger autistic voice on behalf of autistic people with learning disabilities and behavioural challenges.
It’s important for all autistic people to have as much personal autonomy as possible. We need to increase people’s capacity to make decisions.
It’s important to distinguish between autonomy and independence. Many autistic people will need lifelong support to function well. Our limited resources should be under our control, but that doesn’t mean we can do everything for ourselves.
The second NAT recommendation (and many of these will require system-wide change to implement) relates to effective communication.
It is vital that care is autistic-person-centred rather than being geared to the needs of families of autistic people (especially when we are talking about adults).
It’s important to address environmental stressors, and provide people with protection such as noise-cancelling headphones. Listen to other autistic people rather than highly-paid ‘experts’ when autistic individuals are unable to advocate for themselves
Don’t label people as ‘complex’! What does that mean? (Expensive!)
Staff training should be autistic-led and/or autistic-designed. (Aside: of course that doesn’t mean that any old autistic person can do a better job of this than a non-autistic person.)
The final NAT recommendation is to accept difference and support positive autistic identity. The annual Autscape conference, which has been running for around 15 years, is a good example of doing just that (and I hope to be able to make it along in 2020).
Autism, education and inclusion
The final keynote came from Rebecca Wood, a visiting postdoc researcher at King’s College London. I’m afraid I was flagging a bit by this stage in the proceedings, so this is a little sketchy.
Rebecca began by talking about autistic children being excluded from schools and therefore excluded from opportunities afforded to their peers. Autistic children and adults lose out, as do their families. Indeed, everyone does.
Noise, communication, curriculum and socialisation are four key exclusionary factors, said Rebecca.
Too much noise! (Tell me about it!)
Being on the edge of things and not knowing how to join in in the school playground environment. Not being part of many after-school clubs. Not being able to go on school trips without parents. (Ouch! So relatable!)
More about the conference: a personal perspective.
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