The #AutisticaFestival session on Mental Health and Co-occurring conditions is starting now.

Again, many more talks I'm looking forward to, though I may (again) have to leave before the end. Sadly, the daily life of an academic continues to make calls on my time!

As I'm live tweeting this panel, I want to say to anyone who sees these:

If these topics are difficult or triggering for you, please, mute/walk away/go and watch cat videos on YouTube to give yourself a break (or whatever makes you smile)

This is tough, look after yourself.

First talk is from Katie Linden from @UniofNewcastle talking about "Complex PTSD in autistic adults", the first study from her PhD

Something I'm really interested in and which has come up in my ongoing work *a lot*

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Research suggests PTSD is more common for autistic adults, and complex PTSD is being added to diagnostic manuals soon.

Sim to PTSD, plus additional symptoms e.g. dysregulated mood, unstable emotions, poor self-esteem, relationship difficulties

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For autistic people, repeated interpersonal trauma is one of the leading causes e.g. being bullied, negative interactions, being exploited/victimised

Lots of crossover in symptoms of multiple conditions, so need to investigate for clearer picture

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Study was 8 online questionnaires, including some which were diagnostic screening

260 ppts, 70.5% female, 11.6% male, 17.8% nonbinary

Average age 36.76, range 18 - 73

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Half of ppts met threshold for complex PTSD, another 11% met threshold for PTSD (mostly because self-esteem was too high for complex PTSD, which is an interesting diagnostic wrinkle!)

~40% did not meet threshold, half because they had symptoms but felt minor impact on life

Participants meeting C-PTSD threshold had sig more negative life events than other groups

Also had sig more aut traits than other two groups

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First study of C-PTSD among autistic people, partly because it is a very new diagnosis

Numbers found here are *very* high compared to general population (where is is ~3-5%)

Likely cumulative exposure to trauma is key, and aut traits potentially make vulnerable to more trauma

Also possible that having experienced trauma may 'intensify' autistic traits endorsed by ppts e.g. hyper awareness is a PTSD symptom, but sensory sensitivities are an aut trait.

BUT is understandable to be more sensitive if trying to avoid a sensory trigger, so interaction key!

Future work would benefit from in-person work to establish and differentiate diagnoses, and to look at differences between childhood and adult trauma experiences

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Next is Georgina Edwards talking about "Correlates of anxiety in autistic individuals with moderate-profound intellectual disability or those who speak few or no
words"

Nice to see work with minimally verbal autistic people presented too :)

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Anxiety is known to be common among autistic people, but work is mostly done with those who speak in full sentences (94% of participants - I hadn't realised it was *quite* that high!)

Estimated current anxiety present for 20% of autistic adults w/intellectual disability

Know sensory processing difficulties and repetitive behaviours are associated with anxiety in autistic population who use full sentences, so looking at the potential of using these as indicators of anxiety among those with few words

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Online questionnaires with parents and carers (55 ppts), who cared for 55 autistic individuals with an intellectual disability diagnosis (36 male, 19 female, avg age 19yo)

Did Wessex qnre (language use/adaptive ability); Social Communication Qnre (aut traits)

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Also did many other qnres

Anxiety/depression/mood scale
Sensory profile
Repetitive behaviour qnre
Anxiety Triggers qnre

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Oops, missed the first results because I'm trying to look at three screens at once!

My bad everyone...

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40% of generalised anxiety was associated with predictor variables - auditory processing issues and repetitive behaviour

Age, adaptive ability, autism characteristics were also assoicated with 25% of generalised anxiety

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For anxiety triggers

37% of variation in number of trigger was associated with all five variables above

Controlling for age/adaptive ability/autism traits, auditory processing and repetitive behaviours explained 21% of variation

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Overall, this reseach suggests that auditory processing difficulties and repetitive behaviours are good indicators of experiencing anxiety in autistic adults who use no or few words

But remember, correlation =/= causation, and this is parent report data

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Next stage in planning is to do work with minimally verbal autistic adults themselves (yay!)

Then it will hopefully be possible to intervene when people are showing signs of anxiety and to improve their overall lived experiences

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Now we are going to hear from Jane Goodwin, on "Is the parent mediated group programme ‘Coping with Uncertainty in Everyday Situations (CUES)’ acceptable and feasible?"

One I haven't heard of, so I'm intrigued!

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Non-academic side note...

I'm enjoying the clear and consistent slide branding from Newcastle speakers!

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Intolerance of uncertainty is a major aspect of anxiety, especially for autistic people (of all ages)

Parents are often good at knowing what their child is uncertain about and trying to mitigate this

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Intervention (CUES) is aimed at tackling the 'mechanism' of intolerance of uncertainty, rather than specific anxieties.

Parent-led, group-based, adapted to different developmental ages/stages as needed.

8 2-hour sessions covering a range of topics

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Aimed at promoting young person's autonomy through promoting flexibility and tolerance of everyday uncertainty - giving them the skills to manage this, rather than trying to remove all uncertainty ever.

Looking at whether it works and could be delivered large scale

50 caregivers took part (45 mothers), children aged 6-16, avg 10y (34 male, 16 female)

Random allocation to CUES or alternative group about social interaction and communication

Parents were interviewed about experience of programme, thematic analysis applied

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86% of people completed the whole programme (which is an impressive rate of retention in my experience)

20 therapists were trained, 8 did delivery in this study

Fidelity (how 'well' the programme was run) analysis delayed due to COVID (how well I know that feeling)...

19 participants from 25 CUES parents have done the interviews, 4 did not attend and 2 did not respond

Themes:

Therapy, Impact and Research

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Therapy:

Finding location was tricky
In-between session work was sometimes forgotten
Useful but took a long time
Anxieties discussed focused more on those without ID, should consider grouping

BUT

Enjoyable, expert advice welcome, learned a lot and felt less alone

Research:

Questionnaires were ok
Info about study was useful
Useful thinking time about child

BUT

Didn't realise so many things were anxiety prev
Spotting intolerance of uncertainty tricky
Guilt about not knowing earlier (which is sad, these are parents doing their best!)

Impact

Felt better equipped after programme, but takes a long time and will be lifelong working on this

Also

Families felt managing better after group
Strategies were helpful
More able to identify high uncertainty situations

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