This morning I'll be live tweeting the #AutisticaFestival talks covering 'Quality of life, stress, and wellbeing' - I'm really looking forward to these!

Of course, my cat has also decided this is the moment she *must* scream at me for attention, so this is going well...

Starting with a brief reflection from Jorik (sorry, missed your last name!) before the panel talks begin

Pointing out how life often stacks the cards against autistic people, and achieving quality of life is personal and a genuine achievement

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Ok, loving "like a nun, I'm a creature of habit"

Talking about the importance of routines and sameness for managing energy resources, reducing masking, and feeling productive and happy

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Importance of being able to focus on self-esteem, rather than productivity, as a source of worth

It isn't always easy, but it makes a major difference to how we treat ourselves and look after ourselves

Now @DrJuliaCook talking about "Autistic Camouflaging in an Everyday Social Context: An Interpersonal Process Recall Study"

Co-authored with @LauraMayCrane @lauralhull @WillClinPsy and Laura Bourne

TW: discussions of negative past life experiences

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We know many autistic adults mask/camouflage as part of their everyday lives, in most situations

Study aimed to:
1) identify specific camouflaging behaviours
2) explore the process & experiences of these camouflaging behaviours

PPTs: 8 women, 6 men, 3 other

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Used Interpersonal Process Recall - an interview with video assist to encourage recall, effectively re-immersing the ppt in the event

Ppts took part in a controlled social conversation, is filmed, then watch back with interviewer. Ppt stops video every time they recall masking

Interviewer then asks qs about those specific behaviours

Analysed with content and thematic analysis, presenting thematic analysis results today

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Four themes

1. Acceptance and Connection

People want to make a connection, but can find it difficult, so use masking to promote a specific image which may make them more acceptable to others

Past exps of being criticised shaped current behaviour

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2. Camouflaging Process

Combination of self-monitoring --> adapting your behavs/selectively disclosing info (active masking) --> monitoring social environment (how are ppl reacting to you) --> alternative cognitive processes (thinking about masking)

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This process is similar to those described by people with "other concealable stigmatising identities" e.g. being LGBT but trying to conform to standard gender norms, having a mental health issue but trying to avoid disclosing it

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3. Intra- and interpersonal consequences

Masking is exhausting. People who do it are often very anxious.

This is especially the case if someone feels that their conversation partner is misunderstanding them etc - but masking can also interfere with making yourself clear

Masking takes up so much brain space that it can stop you being able to make the relationships you are using it to try to bolster.

Focusing on making a good impression can get in the way of being authentic, which is often what people value

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4. Authentic Socialising

Reduced desire to camouflage over time, increased 'authentic autistic socialising' e.g. with other autistic people, or disclosing autism to social partners, stating needs and adaptations to make socialising more positive

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Overall:

NT majority views of/interpretations of autistic ppl are often internalised by autistic people and contibute to masking

Would be good to have more authentic autistic socialising

Need to focus on changing NT views of this to make it 'safe'

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Next up is @cjcrompton talking about her work on "Supporting older autistic adults in residential care: identifying priority areas for research and practice"

Work was funded by @Autistica - team was Catherine, @autismage @SueReviews and Michael Dawson

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We know autistic people are more likely to experience poor health, which may have an impact into later life - but we don't know yet.

We also don't know whether care homes are able to/do meet the needs of autistic adults in later life

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Research aimed to identify priority topics for future research and practice relating to older autistic adults in residential care

Key to understand what it is that those older autistic adults want for themselves, along with views of families and clinicians

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Multi-expert group took part in three summits to discuss issues, came up with 10 themes

Can see these in detail in recent paper - https://www.liebertpub.com/doi/full/10.1089/aut.2019.0080

Open access!

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1. Managing transitions - need tools for helping people move from home to care, need to know what helps this go well

2. Autism training - few staff currently get autism training, but more should to ensure good quality care; more than basic facts but also wellbeing support

3. Recognising and respecting differences - reconsider options around social activities, rather than assuming these are always desriable; making hobbies and interests available

4. Supporting physical health - autistic people have barriers to healthcare across the lifespan

5. Sensory environment/processing - how does this change across the lifespan? Are there gendered changes i.e. menopaise? Need to know how this affects care too

6. Autonomy and choice - care should support autistic older people in making their own decisions as much as possible

7. Design principles - how the physical environment can be made more accessible for autistic older adults

8. Community and belonging - moving into care can disrupt existing community ties, and can be hard to build new ones. Need ways to support genuine rels

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9. Advocacy - need autism knowledgeable advocates for autistic people who may be making legal choices etc at the same time

10. Evaluating care quality - need tools which address quality of care for autistic adults specifically, not just assume existing frameworks apply

Team has created an open access tool to talk to autistic older people about their satisfaction with care:

The Autistic Satisfaction with Care Holistic Interview, can be found through the DART website

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The next talk is from Elizabeth Weir, from @Cambridge_Uni on the "Lifestyle and Daily Habits of Autistic and Non-Autistic Adults"

TW: physical health disparities, mortality disparities

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We know autistic people are at risk of premature mortality, with increased risk esp of cardiac issues, diabetes, and obesity

Little research to date looking at why this is though, and even less work with those over 35

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Participants completed an online survey about lifestyle choices, daily habits, personal and family medical history

Sounds intense! 512 questions covering 150+ medical conditions... well done to anyone who finished all that!

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1183 autistic ppts, 1203 control

Avg age 41 for both groups, 65% female, mostly white, mostly UK based

Removed self-diagnosed people and those who said 'other' to gender - I'd like to see the rationale for those decisions

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Research with children shows restricted eating, eating disorders, less interest in exercise, high levels of sleep disturbances

This study was seeing if the same patterns present in adults

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Autistic ppl 60% as likely to meet 'minimum exercise goals' (exercise once a week/75 min per week)

60% as likely to eat 5 fruit/veg every other day, 70% as likely to drink caffeine

130% as likely to eat high cal foods

No diffs freq drinking water/sugary drinks

Aut people 1.6 - 2.5x more likely to report all dietary restrictions

2x likely to report restriction due to allergies - possible links to overactive immune system work?

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Aut people 1.5 - 3.6x more likely to report all sleep disturbances (except sleep talking) especially night terrors and difficulties getting to/staying asleep

We know how important sleep is, and there is the potential for so many knock-on problems

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Aut ppl were more likely to be obese/underweight, least likely to be of normal weight

This is the same as the findings of one of my papers, though this study has an even larger sample

My paper (open access) https://link.springer.com/content/pdf/10.1007/s40519-019-00695-8.pdf

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There are major implications of the findings from this work (and my study too) for how we might try to support health and better long term outcomes (i.e. let's try to stop those premature deaths!)

Thing is ... this still hasn't really asked anyone *why*. We need qual work too!

Without asking what is contributing to these lifestyle differences, it's just going to lead to even more top-down, researcher-led recommendations which potentially don't interact with the realities of why these choices are made.

More co-production please!

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Penultimate talk this morning: "Relationships Between Autistic and ADHD Traits and Self-Reported Quality of Life in Young Adults" from Simone Capp from @KingsIoPPN

(Shout out to the people I used to work with there!)

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She starts by making the argument that we should be looking at co-occurrence of autism and ADHD behaviours because it is so common (up to 60%)

But pretty much all work is with children (as ever!) despite the fact we spend most of our lives as adults!

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QoL work shows that autistic adults, and adults with ADHD are both more likely to report poor QoL compared to control groups

So is there an impact of the interaction of the two conditions above and beyond either one alone?

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Data pulled from a big cohort study - 473 participants, 45% male, avg age 22.5 y

did SRS-2 (autism traits), Barkley Adult ADHD rating scale, WHOQOL-BREF (short QoL measure with physical, psychological, social&environmental subscales), and online Ravens (cognitive ability test)

Results

Males reported better physical and psychological QoL than females (no diffs social/environmental)

Age/cognitive ability no impact

More autism traits = lower all domains

More ADHD traits = lower physical and psychological QoL

No interaction autism and ADHD

Lack of statistical interaction does not mean that we should ignore the real-life interaction of autism and ADHD for individuals.

This can be significant and have a major role in how support for each person should be designed and where support is needed

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Final talk from Ned Redmore,from @OpenUniversity on his work on "The phenomenology of everyday life within a day support service for autistic adults"

Quick note - not using 'service user', but 'inhabitants' to respect the ways in which autistic adults inhabit the place

I've always wondered about that kind of language use, it's nice to get an answer of sorts (for example, I have an intense dislike for the term 'client' because it seems very clinical for services which often talk about having a relational focus)

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Study was done through:

Time with Ben, an autistic adult with profound learning disabilities, adapted methods according to Ben's experiences

Using the theory of 'place ballet' - I haven't heard of this before and I *love* the term!

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Looks at how people move through and use the space available to them - illustrates importance of physical environment in contributing to social environment/relationships

Some people have personal areas in the service, some are transient, workers move a lot

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Personal areas are embedded within inhabitants schedules, so others are aware of their rights to space use even while they themselves may be transiting between or around these spaces

These are customs rather than rules, but the social environment means that people use them

These spatial hierarchies and customs helps to create expectations of routine and predictability which allows inhabitants to develop their own habits, allows more authentic personal expression, provides comfort and normalises behaviours for them and others

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Argh, @virginmedia dropped out again!

I keep missing things :(

Workers talked about a sense of risk as an inevitable part of the role, as the hall is a busy space with inhabitants with their own customs and the workers may not know them all.

More experienced workers felt less risk as knew more and could predict reactions

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But the practices inside the hall are more predictable than the world outside, so it is still seen as a place of safety alongside the risks

In the hall, support workers and inhabitants often teach each other on how to work together

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Stories of community, shared moments, and individual personalities do not make it into official documentation, but are what helps to make the space work smoothly and well for inhabitants

So staff pass on these stories and customs to each other informally

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Move to Q and A now - I won't live tweet that because my experience is that it is much harder to convey a conversation than a talk!

Hope you've enjoyed hearing about it this morning, and see you again this afternoon!

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