Thread by @SedgewickF

Paper 32 of 2020! I'm back!

'When my autism broke': a qualitative study spotlighting autistic voices on menopuase (2020) Moseley, Bruce & Turner-Cobb, Autism

Picking up this paper in response to a Twitter chat yesterday

#Autism #Menopause #AutisticElders #AutisticWomen

Abstract

Onset of menstruation can be very difficult for aut women, but this is first paper looking at onset of menopause. 7 aut ppl assigned female at birth (AFAB) took part in online focus group, age 49-63. Found lack of knowledge, impact on masking, and need for support

Lit Review

Autistic women are historically under-researched and their experiences under-represented

Esp lack of lifespan work, which is important as being bio female carries specific health events and risks, esp around reproductive trajectories

#Autism #Menopause #WeeklyPapers

Menopause is a key one of these events which has been (to now) ignored in research

There is work on menarche (starting periods) and experiences of managing menstruation, both biological and qualitative, but this is missing for menopause

#Autism #Menopause #WeeklyPapers

Menopause can start around 40yo, and most women have gone through it between 50-53yo.

It often comes with a range of symptoms which can last for years. Some cognitive repercussions are reported e.g. worse memory. Also increases in MH issues. All hormone driven.

#WeeklyPapers

Resilience to these symptoms for (presumed) non-aut women is associated with strong social support, optimistic outlook, non-avoidant coping strategies and lack of lifetime history of psychiatric illness

While some women in these studies may have been autistic, no-one checked 🤷‍♀️

Considering that we know autistic people, esp autistic women, are more at risk of suicidality, traumatic life events etc, they may be more at risk of negative experiences around menopause than non-aut ppl are. This is worrying!

#Autism #AutisticElders #Menopause #WeeklyPapers

Current study sought to talk to autistic people with experience of menopause about their knowledge, what it was like for them, and how this might differ to non-aut experiences.

#Autism #Menopause #AutisticElders #WeeklyPapers

Methods

7 aut ppl (6 women, 1 non-binary) took part in an online focus group through anon chat. 7 'starter' questions to prompt discussion.

Age 49 - 63, avg age 54.8yo; all scored above cut-off on measures of aut traits

#Autism #Menopause #WeeklyPapers

Results

1) Lack of knowledge and understanding
1.1) Prof vs patient expertise

Autism research focuses on children/young people so many ppts had met medical profs w/little knowledge (or even thought/interest) to autistic aging - so had ended up doing own research on 'normal'

1.2) Neg exps with profs

Many ppts felt doctors were lacking knowledge about menopause in general, let alone autistic menopause - leading to significant skepticism of their usefulness in this area

#Autism #Menopause #AutisticAging #WeeklyPapers

1.3) Barriers to progress (of knowledge)

Ppts agreed menopause is often seen as distasteful so is not discussed, plus they had smaller social networks to discuss what was 'normal' in everyday life. Also, many found it hard to express exps, but knowing they were autistic helped

2) Cracking the mask and adaptive functioning
2.1) Menopause amplifies autistic presentation

Ppts felt entering menopause intensified autistic traits (preceded dx for 2), and interestingly they found masking much harder during menopause - the title 'break'

#Autism #Menopause

2.2) Communication and relationship difficulties

Assoc with 'breaking the mask' ppts found communication difficulties increased, esp combined with intensified sensory responses

This had knock-on effect on relationships with partners and others

#Autism #Menopause #WeeklyPapers

2.3) Sensory heightening and executive decline

Intensified sensory responses (plus new ones) came up frequently - hot flushes mentioned a lot.

These led to more meltdowns, and ppts associated with executive function decline as well

#Autism #Menopause #AutisticAging

2.4) Neg emotions and stress reactivity

Ppts talked about increased anxiety and depression, plus new MH diffs e.g. panic attacks - and several said they were newly suicidal

2.6) Sleep, self-care & health

Menopause made self-care more difficult and sleep worsened for most

(actual) 2.6) Midlife identity and life after menopause

Ppts highlighted that midlife is a period of lots of identity changes anyway and menopause adds to these (e.g. children moving out)

For some they felt life improved post-menopause - though details not given sadly

#Autism

3) Finding support
3.1) Scarcity contrasts with need

There is high need for support but little useful info was found by ppts

3.2) Advice and resources

Need for info in layman's terms was emphasised, not medical, idea of peer-led work raised

#Autism #Menopause #WeeklyPapers

3.3) Two-way communication

Ppts talked about medical profs needing to listen to them in building knowledge, not just treating them as patients. Also need for cross-discipline comm between profs

(and academics! - 'the biomed guys and the psych guys don't seem to talk much')

3.4) Embracing individual differences

Ppts said optimal support should recognise holistic context of individual that was impacting menopausal experiences and support needed

I'm yet to come across an area of research where that isn't true!

#Autism #Menopause #WeeklyPapers

Discussion

Menopause is a major life change for non-aut women, and we have to recognise this is also true for aut women

Study suggests it may intensify existing challenges, and raise new ones - esp as there is almost no knowledge of 'autistic menopause'

#Autism #Menopause

This lack of knowledge meant ppts reported mixed, but generally negative, experiences, both of menopause and of the support they sought out

For some, seeking medical help w/menopause led to an autism dx, as a kind of 'silver lining'

#Autism #Menopause #WeeklyPapers

This greater self-knowledge helped some 'crack the mask' and act in ways more authentic to themselves

Many talked about increased MH difficulties, which for some also went as unmet health needs along with menopause

#Autism #Menopause #WeeklyPapers

A lot of the challenges to accessing that health support are the same as identified in other work - on MH, physical health, even menstruation - and hopefully people writing healthcare guidelines start picking this up soon!

#Autism #Menopause #WeeklyPapers

Limitations

1) small sample-doesn't worry me here
2) cross-sectional-longitudinal comes next!
3) no investigation of hormonal status - not the purpose of this type of work. Other people can do that
4) ppts were immersed in autism community='expert patients'-may impact responses

Limitations 2

5) all ppts were of avg IQ - mentioned themselves that those with ID were left out (yay for research informed chats!)
6) retrospective reporting of exps - sure, but that's the only way memory works until we have time machines?
7) issues of dx and female ppl as ever

Conclusions

Menopausal transition periods may be times of heightened vulnerability for aut ppl who go through this.

MH and exacerbation of communication challenges are specific concerns, and support needs to be developed/adapted at speed

#Autism #Menopause #WeeklyPapers

My Thoughts

This is an interesting paper. I've had conversations about menopause with some autistic friends, and I'd have liked to see more space given to quotes here so voice came across more

Saying that, I think this journal also has a 6000 word limit which is tough!

My Thoughts 2

Autistic aging is something we need to be talking about more in general, and menopause is a specific aging related challenge that needs fair consideration and research.

This research shows exactly why and gets it across pretty clearly.

Enjoy your weekends!