‘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

Theme 1: A lifetime of being misunderstood

All participants’ accounts were of living most of their lives not knowing that they were autistic and trying to fit in. Growing up in an era when autism was little known provides insight into how a lifetime of being misunderstood has shaped their lives.

As children, many of them were repeatedly blamed for their differences: ‘I wasn’t diagnosed as a child which you should be these days. [. . .] Everybody thought I should be normal’ (P2); ‘[I] was frequently told I was a nuisance’ (P7). Attempts to pressure them to conform had often involved harsh criticism or abuse: ‘One of my teachers was disciplined for the extent of bullying to try to make me be like other children’ (P19). These past experiences of devaluation and denial of their autism impacted current interactions, including with healthcare staff: ‘I think I find it quite difficult to trust people and feel comfortable, you know? [. . .] Because I think I feel I won’t be taken seriously’ (P9).

As adults, most participants experienced anxiety and depression, which they linked to feeling different from others, and exhaustion from masking: ‘It just seemed like, although I was successful in my career, I was living this pretence, and it was so draining, so tiring, so stressful. And I think that’s where the depression came from, and still these feelings that you’re not the same as everybody else’. (P8)

One highlighted that anxiety was something that they had always lived with: ‘If you live in a world which makes you anxious all the time, it’s not a mental health problem. It’s just who you are’ (P7).

This anxiety was replicated when accessing services: ‘Your experience in the hospital is just exactly the same as your experience anywhere else, basically’ (P19).

Theme 2: Autistic people falling between the gaps

Many were left to manage their mental health difficulties on their own, with services often discharging participants.

This was due to poor recognition or understanding of autism and inadequate service provision: ‘The local health service authority has dismissed me from the mental health department three, maybe four times without explanation’ (P14).

When accessing mental health services, participants’ autism had often remained undetected or misdiagnosed: ‘He [a psychiatrist] didn’t understand me at all and misdiagnosed me with a personality disorder’ (P3).

There was also a sense that many autistic people without a co-occurring learning disability were overlooked: ‘In some parts of the country, they put you [autistic people] under mental health but in our part, you’re put under learning disability but if you need a counsellor or anything, you’re not allowed to use their resources if you haven’t got the learning disability as well’. (P6)

Participants also highlighted the lack of health or social care services available: ‘I’ve had no help. I still don’t get any help. The only help I get is the stuff that I get from people I found on Zoom, from autistic groups. That’s the only help I get. And knowing that I’m not alone and there are other people out there’. (P2)

There were also difficulties getting an assessment: ‘My wife observed that I have similar traits [to my autistic son], and so I went to the GP and asked for a referral. It took six years and a change in the law, because they said that [only] if you have learning difficulties, [. . .] you could be assessed’. (P12)

One participant reported how inconsistent policy has potentially led to a reluctance to disclose his diagnosis:

‘I have chosen, at this point, probably more out of procrastination than deliberately, not to tell my GP about my diagnosis. Because in accordance with Scottish law, and I’m not sure about this but it’s what I’ve gathered from reading, autism is, per se, a sectionable diagnosis’. (P5)

Theme 3: Processing autism diagnosis in later life

Most participants found autism to be a helpful explanation for their differences, and something that had led them to view themselves in a more compassionate light: ‘I’ve had 30,000 questions as to why my life has been hell and the word autism came into my head. [. . .] it suddenly answered those 30,000 questions’ (P2). However, some experienced resistance to the idea that they are autistic: ‘Because my diagnosis was so late, there’s some part of me that still thinks I can make everything all right and just be normal’ (P9). Participants also reported unmet needs around the impact of being diagnosed:

‘[the autism diagnosis] made me feel like I had to look at my life. I had to review my whole life through the lens of autism. And, I don’t know, you’re very confused. [. . .] You’re just left with all those feelings that you don’t know what to do with them’. (P16)

It was therefore concerning that participants had needed to process the diagnosis and what that meant for them with little or no support.

Participants were also acutely aware of the stigma surrounding autism: ‘However well you know someone, it always affects, it seems to affect how they behave towards you. [. . .] It’s just as though they think you’re somehow not quite all there’ (P9).

Some participants had not disclosed their diagnosis even to those closest to them: ‘I haven’t told my mother. I haven’t told my sister. I haven’t told the people at work. And the reason for that is, it’s because I don’t feel safe to do that’ (P16).

Having a record of autism on their medical records was also concerning for some: ‘At the time I had an eating disorder, anorexia, on my notes. And that’s always a stigma, people always look at you as if you’re a piece of rubbish. Of course, they now look at me as double rubbish because I’m autistic and I’ve got an eating disorder’. (P3)

Theme 4: Concerns about service pressures and scarce resources

All participants expressed concerns about the increased pressure on services and reduced resources. This led to fears about being a burden: ‘If it turns out that whatever it was [I went in for] isn’t significant, I feel absolutely terrible that I’ve wasted time and money, and I don’t want to do that’ (P19).

As a result, many were reluctant to access services: ‘I don’t go to the doctor unless I think it’s really urgent’ (P4).

When they did access services, most expected sub-optimal care: ‘I know my practice must be so overworked in terms of the GP-to-client ratio. They just don’t have the time or resource to do what they might have done in the past’ (P17).

There was also a sense that older adults were not the priority: ‘Sometimes it feels like if you’re above a certain age, your health doesn’t, it’s not that it doesn’t matter but it’s not as important as if you’re young’ (P16).

Participants spoke about preferring face-to-face over telephone consultations, given that in-person interactions offer cues that can help to determine underlying meanings, and reduce anxiety through co-regulation: ‘If I’m talking to somebody and they don’t get what I’m trying to say, I can literally go from nought to 20, and panic. [. . .] Whereas if I was seeing them face-to-face, they could just say a few calming things’ (P3).

This was concerning as face-to-face appointments had become less accessible since the pandemic. However, participants also stated that it was helpful for the initial contact to be via text or email: ‘But now I can put a request in, that I can think about, as an email. And somebody will get back to me, as an email [. . .]. So, in a sense, that builds in the pauses. That is more helpful for me’. (P13)

But there were also queries about who might be left behind: ‘There are people who are older or people who’ve got conditions which means they can’t interact with these types of things [online services], so where do they go?’ (P15).

Increasing waitlists for treatment that could improve quality of life was also a concern, with participants expressing frustration about a lack of communication from services: ‘At one stage, months ago, I said, how long is the waiting list now? Because you used to say two years. And they simply said, oh, we’ve stopped telling people’ (P14).

This led to increased anxiety: ‘I’d much rather know whether it’s two months or two years because it’s not knowing. And I find not knowing things really, really hard’ (P9).

The sense of scarcity around resources also exacerbated participants’ anxiety when communicating with their GP: ‘[Getting a call] is obviously very difficult for me because I then am in anxiety all day. [. . .] Is my phone working? Is the internet working? [. . .] And then when she’s speaking to me, have I remembered everything I wanted to say? Did I say it in the right order?’. (P11)

Theme 5: Lack of continuity of care, empathy and understanding

Participants noticed that high turnover and service restructuring meant that it was difficult to form relationships with staff.

The resulting lack of residual knowledge reduced the likelihood of reasonable adjustments: ‘I’ve had to go back three times [for blood tests], and they’ve said, oh, we haven’t got an appointment for two weeks and I’m absolutely terrified for two weeks, and I mean terrified, meltdowns, everything [. . .] my GP that I had before wouldn’t have done that. [. . .] he would put me in somewhere the next day’. (P6)

For this reason most participants reported that seeing someone who knows them reduces their anxiety, particularly when seeking support for complex health issues.

Continuity of care was also important as knowledge gaps were common: ‘But I think there’s very little awareness in healthcare about autistic needs. [. . .] I’ve worked in healthcare since 1975 and I’ve had no training about autistic needs [. . .] And I know GPs, what do they get? About an hour?’ (P16).

Misunderstandings based on outdated ideas of autism were consistently reported: ‘. . . people [including healthcare professionals] don’t understand the breadth of autism [. . .] Like the way that you can be really normal seeming in their eyes and then really are very distressed about certain things’ (P10).

This would often lead participants to feel like they were not believed or viewed negatively when disclosing their autism.

For these reasons, long-serving, empathetic staff were highly valued: ‘My GP retired. Now it’s absolutely tragic [. . .] she was the first person that ever made us feel positive, or less negative about our eating disorder. [. . .] She said, you do know that an eating disorder’s not your fault, don’t you?’. (P3)

Participants identified empathic professionals by their receptivity and willingness to offer reassurance: ‘If I say, I’m autistic and I also have anxiety, they say okay, anytime that you feel you want to stop. [. . .] The ones that are genuine, they will, whatever they’re doing, they’ll say, is this, okay? Is that okay? I’m just going to hold your hand, they will explain to you, I’m just going to read your pulse here’. (P11)

Theme 6: Anxiety, alexithymia and sensory overload

Participants were acutely aware that accessing healthcare inherently exposes them to novel and uncertain situations: ‘So, you go to the GP, or if you go to the hospital, what’s going to happen? I don’t know what they’re going to do to me. [. . .] It’s new surroundings, new people. All those things add to your overall overload and anxiety’. (P8)

Anxiety represented a challenge because it made it harder to communicate: ‘If I’m talking to a doctor I’ve got this mental list of things I need to say [. . .] And I often forget, sometimes, even the most important things, I forget to say’ (P9).

Some participants used strategies such as rehearsing what they might say in advance, though this was not always effective: ‘When you’re all revved up to say what you want to say, and you walk in [the doctor’s room], and they go I’m just looking at your notes. So your impetus has gone. This is wrong. It shouldn’t have happened, because it wasn’t in your rehearsed pattern’. (P7)

Some participants reported that they struggle to notice and communicate emotions (‘alexithymia’): ‘That’s probably a reason why they [the psychiatrist] couldn’t sort me out because I couldn’t tell them how I was really feeling. Because you say to me, how do you feel and I’ll say fine’ (P2).

Some also struggled to recognise and communicate bodily states (‘interoception’): ‘I’ve been walking on a sprained ankle for ten years. I don’t notice that stuff, basically. It’s not that I can’t feel it, it’s just the brain doesn’t pick up the signal’ (P19).

Differences in non-verbal communication also made seeking support difficult: ‘You can see they’re [non-autistic people] in pain, but you can’t see I’m in pain because our faces could be the same for happy things or sad things [. . .] So they don’t get how bad you are’ (P6).

Sensory overload also made accessing services and undergoing certain procedures a challenge: ‘MRI scans are very difficult actually because they’re so loud. But it’s the MRI scans that have confirmed what my diagnosis is [arthritis], so it’s a payoff isn’t it?’ (P13).

All the above feed into each other and combine: ‘[Upon entering the hospital corridor] you start spinning around, making noises. Going into meltdown because of all the people there and the noise and smell. And then if I ask directions, they give you three or four ways to go up the lift and God knows what, and I can only remember the first one. And then I can’t go in a lift on my own and it was upstairs. You had to go in the lift. I couldn’t have gone up all the stairs. [. . .] So I just ended up not being able to drop it [urine sample] off’. (P6)

Theme 7: Reduced social support and concerns for the future

Some participants reported increased confidence in requesting accommodations as they got older: ‘I found, as I aged, that it’s become more and more exhausting. [. . .] I have learnt to do things like when I know that something will be too much, to just say no, I’m sorry. I can’t do that’ (P7).

However, participants expressed concerns about who would support them in the future: ‘We, mostly, have fairly tortured relationships with our families who regard us as a burden. We, usually, have quite small circles of friends. A lot of us are married, but a lot of us aren’t. And a lot of marriages break down and a lot of us are non-binary which adds an extra layer to it. And I think it is extremely worrying contemplating where autistic people are going to be when incapacitated’. (P19)

These concerns were especially relevant to the impact of age-related decline: ‘When I’m more elderly and less able, mentally and physically, now my life is in somebody else’s hands to a degree. Now, if that person [. . .] they are not autistic aware or haven’t had training [. . .] I’m just going to be their worst nightmare, aren’t I? [. . .] If you try to make me do something I don’t want to do, I might not have the capacity to explain to somebody, I don’t like this because of the noise, or, I don’t like this, stop touching me. [. . .] If I haven’t got the capacity to do that, well, that’s me locked into hell’. (P8)

Participants also highlighted that social isolation was something that health providers should consider: ‘Older autistic people might be more isolated than older typical people. And so therefore it’s kind of important [for healthcare staff] to see the whole person and not just the medical condition [. . .] there may not be the same support that a typical person would have in terms of family’. (P1)

Recommendations for service development

Participants offered suggestions for improvements that could facilitate engagement and reduce anxiety (see Table 2). These recommendations were co-constructed through reflexive thematic analysis, with a table of quotes being found in Supplementary Section 3.

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Table 2.

Summary of healthcare recommendations and quotes made by participants.

Comprehensive staff training: Develop and implement training programmes that equip healthcare professionals to better understand and support autistic needs or experiences, including communication or sensory differences.	‘I know that GP practices reception staff are meant to have some form of training in autism. But I mean, I think I’d like to know how far that goes and how far they can actually apply that in the situation’. (P1)
Consistent policy: Develop consistent policies that prioritise the needs of autistic individuals at a national level. This might help address some of the systemic barriers to access that many autistic people experience across the UK, especially when it comes to accessing services or funding.	‘In some parts of the country, they put you under mental health but in our part, you’re put under learning disability but if you need a counsellor or anything, you’re not allowed to use their resources if you haven’t got the learning disability as well’. (P6)
Proactive care: Establish specialised, targeted support services for autistic older adults. These may include regular check-ins, updates about waitlist positions, autism-specific support groups and tailored support to combat negative experiences with services and social isolation.	‘If just someone [from the GP surgery] could [make contact by phone]. Not all the time but just now and again, check in and it’s, how are you doing? Have you got any problems? Is there anything, we need to send you to help you? That sort of thing would be brilliant because then you don’t feel as though you’re being a nuisance’. (P9)
Sensory-friendly practice: Environmental factors such as temperature, lighting, noise and overcrowding should be considered. Similarly, staff should be mindful of differences in touch, smell, noise, light, and taste or pill dysphagia.	‘I suffer from sensory overload, I would like that to be sorted out. A facility where I can be kept quiet, no bright lights and people rushing around in front of me. Ideally, to be put into a single room [. . .] shielded from the rest of the noise’. (P2)
Empathy and reassurance: Provide clear reassurance, empathy and explanations to help reduce the power imbalance many older adults with autism might experience throughout their lifetime. This could be due to them being disbelieved and stigmatised by family, peers and figures of authority such as teachers, employers and especially healthcare professionals.	‘It’s a question of just getting to know that person, even right at the start of the conversation just call them by their name. Maybe a couple of comments about a past experience, just to signpost them that you know this person, and maybe a couple of reassuring comments that, when you do come in, you’ll be seeing this person, and that’s going to happen’. (P3)
Communication and processing: Be mindful of communication, processing or learning differences. Adjust according to visual or auditory learning style, allow extra processing time, check understanding and adapt questioning styles (e.g. use close-ended questions if necessary).	‘I think just needing a little bit more time, and probably making sure that what they have said has been properly understood. Because the language thing can be a big thing. [. . .] I take it literally, and then discover much later that that’s not what they meant’. (P7)
Continuity of care: Assign the same healthcare professional so there is continuity of care. If this is not possible, read the notes and ask the autistic person if they have any needs or adjustments. Also, check in with different healthcare services or staff to ensure more seamless care.	‘As soon as they see [. . .] on your records, on your piece of paper, a little autism sign or something. [. . .] That they go, oh yes, click. Oh right. Now I need not just to refer to the last GP’s notes [. . .] I need, for this guy, to see the same person every time. And this never happens’. (P14)

Lived experiences which predispose access challenges

Several of the identified themes overlap with previous research on younger and middle-aged autistic adults. These include autistic people falling between the gaps, lack of continuity of care and challenges with anxiety, alexithymia and sensory overload (Mason et al., 2021; Walsh et al., 2020). However, our study is unique in highlighting the long-term impact of growing up and living most of one’s adult life without knowing about autism and being misunderstood. As reported elsewhere, many participants had been targeted and blamed for their differences (Pearson et al., 2023), experiencing social exclusion and financial instability (Davies, Romualdez, et al., 2024). This coupled with a societal lack of autism awareness left many feeling vulnerable, different and anxious since childhood.

Participants reported that their mental health needs remained unmet as they were unable to access support due to inconsistencies in policies and service provision. This is in line with other studies which suggest that mental health services are often ill-equipped to cater to the needs of autistic individuals as they are under-resourced and staff can fail to make adjustments (Brede et al., 2022). As a result, participants had to manage alone, with services discharging or misdiagnosing them, including applying stigmatising labels like borderline personality disorder (Fusar-Poli et al., 2022). This, coupled with a lifetime of being misunderstood even by those in authority, meant that accessing support was particularly anxiety-provoking. For this reason, many valued when professionals showed empathy and explicit reassurance as this helped reduce the sense of power imbalance.

As reported elsewhere, many participants embraced being autistic as a positive aspect of their identity (Davies, Cooper, et al., 2024; Hickey et al., 2018). However, for some, the diagnosis came with mixed emotions, especially if they had internalised societal stigma about autism. As such, there was an urgent need for post-diagnostic support, which has consistently been found to be lacking (Crane et al., 2018). This was also apparent among the older adults we interviewed, with autism support groups being non-existent in certain regions. For some, joining an online group was the only way to connect with other autistic people. However, many were looking for local in-person groups, particularly where they could meet other autistic older adults.

Services changing and becoming ‘very mechanical’

Similar to research on younger and middle-aged autistic adults; system and service-level barriers emerged as important factors that influence overall healthcare experiences (Mason et al., 2021; Walsh et al., 2020). However, participants also expressed concerns about the increased pressure on healthcare services and many were worried about being a burden or wasting resources. While this may not be unique to autistic older adults, there was a sense that healthcare services and society, in general, did not prioritise the needs of older adults. This, coupled with the fact that novel situations were particularly stressful, meant that many participants would delay accessing support unless it was urgent.

Changes to service design that facilitated communication with the GP through email or especially text messages were described as helpful (Doherty et al., 2022). However, other changes, such as longer wait times, reduced updates, disjointed care, limited face-to-face appointments and complicated care pathways, were a concern. There was a general perception that healthcare is becoming more ‘mechanical’ and less empathetic. Like findings from autistic younger adults, the presence of a consistent patient-provider relationship was crucial in building trust, familiarity and personalised care (Mazurek et al., 2023). This need for consistency may be particularly important in later life, where there might be more complex healthcare needs.

Access challenges and concerns for the future

Sensory differences, anxiety and alexithymia were all listed as barriers to accessing healthcare services. These findings are consistent with previous studies in younger or middle-aged adults (Calleja et al., 2020; Walsh et al., 2020). However, participants also described how the anxiety of entering a novel situation can worsen social communication and cognitive processing difficulties. To manage, some participants use compensatory strategies such as practising what they might say in advance. However, this can increase cognitive load and make it more difficult to remember what was discussed (Livingston & Happé, 2017). All the above, coupled with having more chronic health conditions, can make it more difficult to access services.

To our knowledge, this is the first study to report autistic older adults’ concerns about the future. Participants highlighted the need for services to see ‘the whole person and not just the medical condition’, particularly for autistic older adults who have reduced social support. There were also significant concerns over the impact of age-related cognitive and physical decline, which could render them less capable of self-advocacy or utilising coping mechanisms they have developed. Studies have shown that smaller social support networks can lead to adverse outcomes in later life (Golden et al., 2009; Sakurai et al., 2019), and this could be especially relevant for autistic older adults who may experience social isolation.

Policy and practice recommendations

Consistent with other studies, participants emphasised the need for improved training so that staff can develop a better understanding of the heterogeneity of autism and the impact that small adjustments can have on improving healthcare experiences (Nicolaidis et al., 2015; Pilling et al., 2012). Participants also identified a need to involve autistic older adults and their families in service design plus the creation of consistent policies which mitigate gaps in service delivery across different regions. This is particularly important in the context of the limited health and social care services which are currently available for autistic adults across the UK (Crane et al., 2018). For the above reasons, participants identified a need for healthcare services to assess the support structures available to autistic older adults, who may be more isolated than their neurotypical peers (Wallace et al., 2016).

Recommendations included regular check-ins by general practice or social care staff. A need for support to coordinate complex care pathways was also identified. During direct contact with patients, healthcare staff should adjust their communication and language to align with the communication differences and preferences of the autistic person. This can include using unambiguous words with no metaphors, visual or written cues to explain abstract concepts, and closed-ended questions if someone is struggling to answer. Similarly, all participants highlighted the importance of having additional processing time to help reduce anxiety and improve comprehension. Moreover, familiarity and knowing what to expect before, during, and after the consultation were deemed essential to high-quality care.