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Paper 20 of 2020!

Autism in Later Life: what is known and what is needed? 2020, Sonido, Arnold, Higgins & Hwang, Current Developmental Disorders Reports

This is a review of work with #AutisticElders covering a wide range of areas

#WeeklyPapers #Autism

Review of literature with autistic over-50s between 2010 and 2019, as we know little about impact of aging among autistic people

Find high rates of co-occurring conditions, often complex. Compounded by low employment, healthcare access issues, and relationship issues
Autism is a lifelong condition, but nearly all work focusses on children and adolescents, some early adulthood.

All adults experience decline in health and abilities as they age, but we don't know if/how this differs for those on the spectrum

#WeeklyPapers #AutisticElders
Currently, life expectancy for autistic people w/out intellectual disability is 58, 50 w/intellectual disability - hence defining over-50 as 'older people'

Two groups of literature - 1) experiences of autistic elders 2) research reqs to include this group better

What We Know

Autism symptoms in later life

Stable self-reported, decrease in observed behaviours, esp repetitive behaviours over time

May be because adults develop masks/coping mechs

Do ppl also find the 'right' ones for them? So less to see?

#WeeklyPapers #AutisticElders
Autistic Identity and Late Dx

There is likely a 'lost generation' who were missed during childhood for a variety of reasons

Qual research suggests getting an adult dx provides relief/explanation, and provides a positive sense of identity

#WeeklyPapers #AutisticElders
Physical Health

Aut adults 55+ in Scotland were 2x as likely to say they had 'bad' or 'very bad' physical health as non-aut adults

Work on specific health conditions is mixed as to more/less likely to have them. Seem no more likely to have 'old age' conditions e.g. hypertension
Physical Health

One where this does differ is Parkinsons, where aut adults may be more likely to develop than non-aut adults

I would like more detail here on some of the studies - I know it is a review, but telling us whether the analysis controlled for other things would help

Most work is on perception (not sure why, but not my thing!)

Again, findings mixed - some more impaired than same-age non-aut adults, some less.

Seems different on specific tasks e.g. cognitive flexibility worse, visual memory better

#WeeklyPapers #AutisticElders
Mental Health

The longest section in the paper. That's kind of nice, because it means people are taking it seriously, but it shows up how little there is on everything else.

Overall, higher lifetime occurrences of MH issues in autistic adults is the take-away

A US study found 72% of aut adults age 40-88 reported a psychiatric dx

As w/younger groups, depression/anxiety most common, plus psychotic disorders (which are less seen in younger people generally)

Mixed as to whether rates increase over adulthood or not.

CW: self-harm, suicidality

Research has shown ~75% aut adults over 45 have experienced suicidal ideation at some point (no time frame given, so unclear whether lifetime or recent)

Reasonable to assume self-harm occurs at similar levels, sadly

#AutisticElders #WeeklyPapers

No research specifically on employment exps of aut adults 50+ at all!

Though often included in general research on the topic, but one study suggests support needs/accommodations needed at work may increase with age

#AutisticElders #WeeklyPapers
Social Connections

Satisfaction may vary with level of support need - those with high independence generally said they were 'fairly/very satisfied' with their social lives

Aut adults who use social media are most likely to have close friends (Hi, Twitter!)

Aut ppl are more likely to have had prev negative social experiences, but generally describe themselves as satisfied in adulthood

I think, from my work at least, there is a sense of finding 'your people' and sticking with them, rather than pressure to have 'typical' friendships

Again, no specific work on over-50s access to healthcare, and ZERO studies with participants over 64!

Some evidence aut adults generally make more trips to Emergency Depts in USA, while also known to face more challenges e.g. communicating with professionals

This is from the perspective of people caring for #AutisticElders - not aut adults with caring responsibilites... 🧐

Key to understand the individual and their needs/responses

Brought to you by studies w/carers of those age 25-39. Huh.

Moving Forwards in Research with Older Aut Adults


There are some moves to do this, but personally I think it's slow, and as pointed out here, avg age in adult studies is 20s/30s

#WeeklyPapers #AutisticElders
There is also little work that actively looks at the impact of aging on what it investigates, even if it has a broader age range

There are challenges: aut over-50s may not have a dx, plus the awful survivorship bias that means we can't work with ppl who don't reach this age
Closing note - we should listen to the #AutisticElders we have, respect their decades of lived experience, and appreciate the things they have to tell us about being autistic in the world.

They are the best resource we have to on how to improve in the future

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