Earlier today, I live-tooted from Scottish Autism’s 2022 conference, Behind the Mask, the first conference the charity has held since 2019.
Back then, it was held in person, in a fancy hotel, and I live-tweeted and blogged about both the content and my personal impressions, to pay for my ticket.
This year, the conference was online, so it was a lot cheaper, and I didn’t need to crowdfund to attend. It was also a lot quieter, so I wasn’t overwhelmed by noise and smells and crowds. On the downside, the lunch definitely wasn’t as good! This post is basically just a distillation of what I tooted, so you can read it all in one place.
Deputy CEO Charlene Tait opened the conference, saying that it’s important to understand masking and its impacts. Scottish Autism have embarked on a process of working with the National Autistic Taskforce to improve involvement of Autistic people.
Charlene acted as host for the day, also chairing the plenary session and offering closing remarks before sending us on our way.
Our first talk was ‘Bigger on the inside’, by broadcaster and stand-up poet Kate Fox.
She began by reading her poem ‘Lots of planets have a North’, inspired by that line in Doctor Who, memorably uttered by Christopher Ecclestone’s Doctor, when Rose (Billie Piper) asked him: ‘If you’re an alien, how come’s you sound like you’re from the North?’
Talking about her diagnosis in 2017, she said it’s easier to be Autistic if you’re Northern (i.e. from Northern England). She said she’s not always open about her diagnosis though, and is nervous about ‘coming out’ – and quipped that true Autistic Pride might actually mean ‘staying in’! She criticised DSM diagnostic stereotypes about Autistic people, for instance that we can’t understand metaphor or humour, which is plainly nonsense.
She mentioned the shocking statistic that Autistic people (in the UK, I presume) have a life expectancy of 54 (so I’m clearly doing well at the ripe old age of 55).
Her talk was peppered with Doctor Who references (as you might expect from the title) and a few props too: a miniature Tardis and Dalek, and a full-size, working (?) sonic screwdriver! Besides taking props on stage, she mentioned that she’d found it comforting to have a non-prop to fidget with while performing, and showed us her happy/sad octopus by way of illustration. (I have a cousin of her octopus, called Octo, who watched the whole conference from behind me on the sofa.) Kate mentioned that her use of stim toys was one of the things leading to her realisation that she was Autistic.
She concluded by talking about difficulties obtaining an autism diagnosis, and the lack of post-diagnostic support offered. She ended up being privately diagnosed at the Tizard Centre at the University of Kent, but didn’t have any post-diagnostic support until the following year, when AMASE (Autistic Mutual Aid Society Edinburgh) were able to help. She is passionate about the Autistic community, especially the online community that has formed on Twitter around the #ActuallyAutistic hashtag there.
The second speaker was Carly Jones, also Autistic, and a staunch campaigner for the rights of Autistic women and girls. Her talk was titled ‘Autistic Spice – born to be mild?’, and she said upfront that she was likely to overshare.
She talked about variations in ‘functioning’ that we all experience over the course of time and across different aspects of our lives, but pointed out that pinning simplistic functioning labels on Autistic people is unhelpful.
There’s much reluctance among the general population to believe some of us are actually Autistic – or at best they assume we must be ‘mildly autistic’ (we don’t ‘look autistic’).
She may be assumed by some to be ‘mild’, her difficulties therefore not taken seriously. Yet she sometimes becomes non-verbal and depends on her 24-year-old allistic daughter accompanying her to act as her advocate. And on the flip side, those labelled at diagnosis as ‘severe’ or ‘low-functioning’ are far too often expected to be incapable of achieving anything.
A lot of difficulties faced by Autistic people aren’t directly related to being Autistic. As Carly’s doctor put it, referring to the common co-occurrence of mental health conditions in Autistic people, ‘autism likes to bring a friend.’
Carly talked about social imagination, as assessed in the standard diagnostic tools, and the difference between that and traditional imagination – making up stories – which Autistic people tend to be good at. She related the story of her having been invited to a group chat for planning a hen party, but not realising – lacking the social imagination to realise – that she’d been invited to the party itself!
She struggles with prosopagnosia (having failed on at least one occasion to recognise her own daughter). And talking of faces, she often takes things at face value and doesn’t ask clarifying questions.
How do Autistic people ask for help? Without feeling able to ask questions, Carly feels that she approaches life only really knowing her plans and not being able to imagine other people’s plans.
Gaining employment is a real struggle, with complex job descriptions, application forms and interviews all being barriers to many Autistic people. Disclosure of an autism diagnosis (whether to do so and at what stage) creates a dilemma, and asking for reasonable adjustments presents an extra difficulty.
As for those Autistic people who do manage to jump through all the required hoops, they can expect to be paid around 33% (?) less than their allistic counterparts.
In a slight rush towards the end, Carly touched on dating (what is flirting etc.?), the justice system (with the problems of false confessions and misreading of Autistic body language) and healthcare (interoception issues).
After a fifteen-minute break, we were back for the second session. Next up was Will Mandy, a clinical psychologist and Professor of Neurodevelopmental Conditions at UCL (University College London), asking, ‘Time to lose the mask?’
Having phrased it like that (and despite the tagline for the conference), he said he’d use the term ‘camouflaging’ instead of ‘masking’ because it’s more widely used in academic literature. You can bet he uses other problematic language because it’s used by other people like him.
He began by talking about Julia Cook et al.’s 2021 review of 29 studies, ‘Camouflaging in autism’. Environment is a big part of camouflaging – it doesn’t just happen in isolation, and it isn’t just done by particular kinds of people. He spoke about the need to distinguish between intent and efficacy, the ability of a person to ‘hide their autism’. (Yes, he said that.)
He asked how we (well, researchers into this sort of thing, I suppose) measure camouflaging. On the one hand, there’s what he called the ‘discrepancy approach’: how does ‘underlying autism’ differ from observable autistic characteristics? On the other hand, there’s self-reporting, using the Camouflaging Autistic Traits Questionnaire (CAT-Q). In Laura Hull et al.’s 2017 paper, ‘Putting on my best normal’, the latter approach was used.
Most research on camouflaging has been done with Autistic adults with ‘IQs in the normal range’. There’s a lot of variation in how much people camouflage. Some is down to autistic ‘severity’ or ‘function’. Some, Will noted, is down to gender: women tend to camouflage (slightly) more than men on average – but there is huge overlap, as Ratto et al. showed in their 2017 paper, ‘What about the girls?’
(Aside: the paper by Ratto et al. has a footnote saying, ‘Identity-first language rather than person-first language is used in this manuscript, consistent with practice among autistic self-advocates.’ That sounds good, except when you read the abstract and see that there are two uses of PFL to the one use of IFL!)
Will suggested a number of fairly obvious reasons why Autistic people may camouflage, the stigma of being perceived as not ‘normal’ being a big one. Yet he noted that it’s draining to mask all the time, and this can mean that our relationships are less authentic (because we’re perceived as our masks rather than who we really are underneath).
In ‘Putting on my best normal’, the researchers found that camouflaging is associated with anxiety and depression in adults. But no mechanism has been established. There are plausible explanations for causality in both directions, or indeed for high use of camouflaging and poor mental health both being caused by a third variable such as stigma.
Will suggested that we need to be mindful of social skills training, which could actually be harmful, because it trains Autistic people to mask harder. He noted that ABA may be harmful (in addition to the other ways that it’s harmful) for this same reason.
He finished by saying that though reduction in camouflaging may be a good thing, it’s not down to Autistic people to do this alone: society needs to be open to our different communication styles.
Much of this research, which Will was directly involved in, was done in association with Simon Baron-Cohen et al. at the Autism Research Centre in Cambridge.
Another Autistic (and ADHD) speaker followed in the pre-lunch slot: Jonny Drury, founder of Dialogic Action CIC, spoke about ‘Autism Dialogue’.
To begin with though, to make us more receptive to what he had to say (and I presume to illustrate some of his techniques), he led us in a very brief mindfulness meditation and then played us a short clip of a Grace Jones song, the relevance of which escaped me.
At this point, my internet connection went down for a few minutes, so I may have missed some important introductory points.
When I got back into the conference, Jonny was talking about ‘culture-bound systems’, and the slide included a quote from Carl Jung: ‘At present, I’m developing a new persona (or identity) to interface with the world. The linking of a new and healthy persona to one soul is an exciting event, it’s like discovering an old friend. My shadows offered some input too.’
No, I have no idea either. Jonny noted that we (humans) are relational creatures. He mentioned traditional tribal cultures, where meeting in a circle is common, and κοινωνία (koinonia), the Greek word translated as ‘fellowship’ by Christians, but more widely meaning ‘intimate participatory sharing’.
The next slide outlined the Autism Dialogue Approach (a.k.a. ADA!), and Jonny noted that while the dialogic approach has been used in a number of different contexts, research into the approach currently lags behind practice.
Jonny introduced a couple of members of the Dialogica board and their interests: Hanne de Jaegher and Anna Robinson (who joined the plenary panel later). He also spoke about Lori Hogenkamp’s thinking on stress adaptation and ‘peripheral minds’.
I had really lost the thread at this point, and found it hard to absorb even a fraction of the information being presented in some very full slides. Sorry! (Luckily we had our lunch break at this point.)
Starting the third and final session, Andy McDonnell, a consultant clinical psychologist and director of Studio III, posed the question, ‘Whose behaviour needs to change?’
He answered his question straightaway (no building up to a surprise twist): it’s usually the practitioner who needs to change, not the person with ‘challenging behaviour’.
He mentions restraint, which he saw used early in his career, and showed a drawing of three people holding someone prone on the floor, two people holding the person’s outstretched arms, and the third, the ‘leg man’ (it was always a man) lying across their legs. I’m just glad it was only a drawing.
A ‘low-arousal approach’ to crisis management involves practitioners reflecting on their behaviour too. And if a behaviour management plan is called for, it’s far more appropriately applied to practitioners than to the people in distress!
Andy noted that a lot of pathologisation, situating problems in people’s heads, is an incorrect appraisal of a transactional/relational problem. A lot of Autistic people are (often) stressed. Andy asked us if we ‘engage at least weekly with any of the following’:
- Light cardiac activity (2–3 hours of walking per week)?
- Intensive cardiac exercise (1–2 hours a week)?
- Participate in a physical sport?
- 10–15 minutes per day of some form of Mindfulness or meditation?
- Drink more than 2 litres of fluid per day?
- Have any absorbing hobbies or interests?
- Regularly eat 3 meals (of whatever size) per day?
- Suffer from gastric complaints, headaches and other minor ailments on a regular basis?
And besides stress, trauma affects Autistic people to a great extent.
Practitioners need to recognise over-control and the perception of control (see ‘The controllability beliefs scale used with carers of people with intellectual disabilities’ by Dave Dagnan et al., 2013).
Practitioners need to exercise empathy (and double empathy comes into play here: see Damian Milton’s 2013 paper, ‘On the ontological status of autism: “the double empathy problem”’).
Andy ended up talking about confidence and courage as the opposite of fear, and then about the survival value of anger. (But once again, I’d lost the plot. Then I realised I’d forgotten to take ADHD meds at the end of the lunch break!)
One more thing: though I didn’t live-toot Q&A portions, I couldn’t help but react (with horror!) when Andy was asked a question about PBS (positive behaviour support, basically ABA by a different name), and revealed that he had been trained in PBS.
The final speaker for the day was another Autistic speaker, Adam Harris. He is the founder and CEO of AsIAm.ie, which since its beginnings in 2014 (when Adam would have been just 19) has grown to become Ireland’s leading autism charity.
As a child, Adam hated people knowing he was #ActuallyAutistic because they treated him weirdly. He had been in a ‘special’ school for the first three years of his education, but when he moved to a mainstream school after that, there was little accommodation made by allistic people around him.
His advocacy work and desire for change led to him setting up AsIAm, an Autistic-led organisation with a majority of Autistic staff. AsIAm works with groups across Irish society (schools, police etc.) – but Adam said he would focus in this talk on universities and towns.
Changes to benefit Autistic people typically benefit everyone. And this was borne out in the two case studies that Adam talked about (but with far too much detail being included for me to have a hope of relaying it live):
- DCU (Dublin City University) – the world’s first autism-friendly university
- Clonakilty – Ireland’s autism-friendly town
Rounding off the day, after all that, it was fabulous to see an Autistic majority on a panel run by a charity that isn’t an APO (Autistic people’s organisation)! About time!
Finally, even though I didn’t have to pay much to attend this conference, if you found this post useful and would like to show your appreciation, you can still tip me at Ko-fi. 😊 Or even better, I’d be grateful if you were able to like, comment on and share this post.