'It's designed for someone who is not me': A reflexive thematic analysis of the unmet healthcare support needs in UK autistic adults aged 65 years and over.
Hassan Mansour, Amy Gillions, Jude Brown and 8 others
PMID 39470046WHAT IT FOUND
Autistic older adults describe healthcare as 'designed for someone who is not me.' They report high anxiety, sensory overload, and a lack of trust due to past misunderstandings.
Key needs include continuity of care, text/email contact options, and staff who offer explicit reassurance and extra processing time.
Key findings
01Participants reported that healthcare experiences replicated the anxiety and misunderstanding they faced in daily life, leading to distrust of providers.
02Sensory overload, alexithymia (difficulty identifying emotions), and interoceptive differences (difficulty sensing bodily states) were major barriers to accessing care and communicating needs.
03Participants valued text or email as the initial mode of contact to allow for processing time, but preferred face-to-face appointments for the consultation itself to reduce anxiety through co-regulation.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was small (n=19) and recruited online, which may exclude those without internet access, those with significant language comprehension difficulties, or those with more severe health problems. Participants were predominantly White British (89.5%), limiting generalizability across ethnic groups. Recruitment via a health literacy survey may have selected for individuals already more engaged with healthcare services. The findings are specific to the UK context with its National Health Service (NHS), where healthcare is free at the point of use, which may not apply to other healthcare systems.
Declared interests
The authors declared no potential conflicts of interest. The work was supported by the Dunhill Medical Trust.
The easy way to misread this
Do not assume that autistic older adults who appear calm or compliant are not experiencing distress. Participants reported masking, alexithymia, and interoceptive differences that can make pain and anxiety invisible to clinicians, leading to under-treatment.