How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography

Misunderstanding leading to misdiagnosis and inadequate support

Participants in some studies reported their difficulties were not appropriately attributed to or recognised as autistic characteristics and were instead misunderstood as mental health symptoms (Bruce et al., 2023; Griffith et al., 2012). An example of this misattribution of autism characteristics was found in eating disorder services, where they were seen as being driven by the eating disorder, rather than being understood as sensory sensitivities:

When I was in hospital, I kept getting told off for walking on tip toes and for fidgeting a lot . . . they thought I was doing these things to burn more calories, except I’d been doing them for as long as I could remember. (Babb et al., 2021)

Similarly, communication difficulties were interpreted as a reluctance to engage in treatment and in some cases as ‘rudeness’. In more severe cases, a lack of eye contact was reported as being understood as an indication of psychosis rather than the social communication style (Au-Yeung et al., 2019). Several studies discussed this issue having arisen in the context of late diagnosis:

I had a formal diagnosis of bipolar (II) condition for around 17 years. I actually satisfy the DSM criteria for this, but have only [ever] been hypomanic once and that was antidepressant induced . . . once my autism had been diagnosed, I was able to get a consultant psychiatrist to say that she didn’t think I’d ever had bipolar and it has been revoked as a current diagnosis. (Au-Yeung et al., 2019)

Such delays in receiving the correct diagnosis were reported as contributing to autistic adults’ sense of blame and feeling misunderstood (Leedham et al., 2020; Punshon et al., 2009). Another issue evident in the extant literature and linked to poor understanding was a sense of professionals underestimating the level of need, as one participant commented, ‘I went to my GP, and . . . he started off saying, because I go to work every day, that means everything’s fine . . .’ (Harmens et al., 2022). In other cases, it was felt that a lack of understanding resulted in their autistic needs being overlooked as ‘there was a lack of understanding or experience and they didn’t want to sort of try and open up something that maybe they didn’t know much about’ (Pentz et al., 2023) which ultimately resulted in autism-specific support needs being overlooked.

Participants also reported encountering outdated and stereotyped understandings of autism which again impacted on the professionals’ understanding and perception of what support they needed and in some cases served as a barrier to autism diagnosis (Babb et al., 2021; Crane et al., 2018; Griffiths et al., 2019; Mason et al., 2021).

The lack of understanding of the spectrum nature of the condition among healthcare professionals is reported in the literature reviewed as either being viewed as not being autistic or being labelled as ‘high functioning’ and therefore requiring less or no support (Camm-Crosbie et al., 2019):

I’m on the high-functioning end [of the autistic spectrum] and so I don’t fit mental health, I don’t fit learning disability. I just fall through the gaps between departments, whether it’s in the health service or social services. (Griffith et al., 2012)

Such misconceptions and misattribution resulting from a lack of knowledge about autism can be damaging, not only in the impact on well-being and sense of self, but in the treatment that is then prescribed and/or provided. In some cases, misdiagnosis was reported as having led to inappropriate use of medication:

I was given anti-psychotics for my behaviour . . . they think because [I don’t] look at them and [I] am nervous of talking then [I] am ‘guarded’ or have ‘flat affect’. (Au-Yeung et al., 2019)

Pressure to be the expert in the room

Several studies contained accounts of participants feeling they had to bridge the gaps in healthcare professionals’ knowledge and be the experts in the room, needing to ‘teach’ professionals how to support them (Talcer et al., 2023). This pressure to be the expert presents a nuanced tension that requires careful negotiation between the healthcare professional and the autistic person:

it feels very much like the onus is on you as an individual to make the assessment happen, rather than a medical practitioner saying ‘this is something that we should see’. (Harmens et al., 2022)

This patient-professional tension regarding who is the expert in the room was also referenced as causing autistic adults to start to doubt themselves and their own understanding of their differences due to the imbalance of power:

. . . got to a point where I was almost convinced that they wanted to be right and I’d actually buried some deep trauma and I had no memory of it and I started questioning the whole – like everything. (Leedham et al., 2020)

This power imbalance and the harm that could be caused due to professional’s lack of autism knowledge and understanding can place a great deal of stress and pressure on the autistic individual.

Communication differences

Many of the studies identified communication differences as a key theme. Participants talked about difficulties with the way professionals interacted with them (Au-Yeung et al., 2019), which impacted on their ability to process and understand information. Participants advised they prefer it if professionals ‘don’t ask rapid fire questions’ (McMillion et al., 2021) and that ‘if they speak quickly, they might as well not bother’ (Parmar et al., 2022).

Participants reported particularly struggling with answering subjective or vague questions due to difficulties with tuning into the subtleties of feelings in their body (Mason et al., 2021) and with alexithymia (Camm-Crosbie et al., 2019; Punshon et al., 2009):

opticians don’t tell you that. They just say ‘can you see a difference’ but they don’t tell you that you are supposed to be aiming for a point when there is no difference . . . it is very stressful for the autistic person because you are looking for a difference that isn’t there. (Parmar et al., 2022)

Studies reported on the negative impact this had resulting in many feeling ‘mentally tired with all the questions’ and feeling as though they were getting it wrong and ‘giving them the wrong answer’ and thereby making things worse (Parmar et al., 2022).

In several studies, participants expressed a need for the language used to be concrete and explicit so that they knew what to expect and to prevent misunderstandings due to literal interpretations (Mason et al., 2021; Parmar et al., 2022; Punshon et al., 2009):

You want to tell them things, but your mind empties, you can’t find the right words . . . I know he [the clinician] doesn’t want the literal answer . . . ‘What brings you here today?’, I know he doesn’t want to hear ‘the bus’. (Mason et al., 2021)

Many of the studies also discussed the use of alternative methods of communication to aid understanding such as visual aids, written information or video guides. For example, Parmar et al. (2022) reported that some of their participants expressed preferring email communication because it meant that they had communication trails they could utilise.

In addition to these communication differences, autistic adults talked about the impact anxiety could have on the ability to communicate effectively. This may be due to building anticipation of the appointment beforehand or could be triggered by sensory sensitivities in the environment, or feeling rushed in the appointment (McMillion et al., 2021):

Well, anything that overloads my head, my brain just shuts down then . . . I have to take my wife everywhere and she has to tell them to go away. (Parmar et al., 2022)

If too many questions are asked, or if questions are asked that are unexpected and which the individual does not have ready pre-prepared answers for, it can be too much to process and can become overwhelming (Mason et al., 2021). One participant explained that ‘if unexpected questions arise, it throws my head in a tailspin’ (McMillion et al., 2021).

Sensory processing differences

Negative experiences of overwhelming environments were reported to contribute to patient dissatisfaction with healthcare services (Babb et al., 2021; Crane et al., 2018; McMillion et al., 2021). For many participants, this experience of sensory discomfort began from the waiting area which was often experienced as bright, noisy and busy (Mason et al., 2021; McMillion et al., 2021). One participant shared that ‘the light, my goodness, it was too much’ (Crane et al., 2018) while another explained that ‘bright lights cause migraines’ (McMillion et al., 2021). Often these statements are made in relation to the bright lights of the hospital environment, but participants also referred to the difficulties that bright lights created during medical assessments:

I didn’t like the ones where you’ve got bright lights in your eyes like the flash and this machine here [slit lamp]. I sort of had to tense myself to cope with it . . . it was at the edges of what I could tolerate. (Parmar et al., 2022)

Participants also talked about negative experiences with noise in medical settings which can be ‘intense’ and ‘upsetting’ and how it is ‘hard to block them out even with headphones or ear plugs’ (McMillion et al., 2021). Often it was not a single loud noise that was problematic, but a multitude of noises.

Touch was also a particular issue for many participants, especially when examinations involved the clinician needing to get physically close. Participants expressed it is ‘beyond uncomfortable’ (Parmar et al., 2022) and ‘unpleasant being touched by a stranger’ (McMillion et al., 2021):

It (labour) was difficult especially when you are having to be touched by medical people, I don’t like being touched at all by anybody . . . It’s hard to explain but it hurt . . . It was horrific. (Talcer et al., 2023)

The proximity of medical equipment was also identified as being problematic and ‘quite intrusive’ (Parmar et al., 2022). Participants also experienced difficulties with the smell of environments including not only medical smells but also strong perfumes worn by practitioners (Parmar et al., 2022).

Accessibility difficulties

Difficulties with accessing services was a theme that came up in several studies beginning as early in the process as booking appointments. Many shared this was particularly difficult to do if a phone call was required preferring ‘other ways to make appointments than phoning’ (McMillion et al., 2021) due to feeling ‘really uncomfortable on the phone’ (Parmar et al., 2022). Communicating on the phone was highlighted as particularly problematic for some because ‘socially, I can use some visual cues, and the phone takes that away’ (Ali et al., 2023). One participant recounted how despite acknowledging they were waiting for an autism assessment ‘did not ask if there was anything they could do to make the phone call easier’ (Bruce et al., 2023). These difficulties with talking to healthcare staff on the phone also had a detrimental impact on the individuals’ well-being due to the associated anxiety (Harmens et al., 2022). For some, there was a preference to book appointments in person rather than on the phone:

I write down what days I’m available, what times I’m available, and I say, I need an eye appointment, there’s the information, fit me in somewhere around that. (Parmar et al., 2022)

The stress that built up prior to attending appointments was described by many as another barrier and often resulted in appointments being cancelled, avoided until they were unavoidable or until a number of problems had accumulated (Mason et al., 2021). One participant commented, ‘I feel very anxious about going . . . I often cancel appointments or put off going for as long as possible’ (McMillion et al., 2021).

Online booking systems were highly praised as ‘absolutely brilliant’ and some participants found it increased their likelihood of accessing healthcare services (Ali et al., 2023) because ‘if I can book online then I don’t avoid making appointments for four months’ (Parmar et al., 2022). One study highlighted how technology can be used to aid accessibility and engagement with healthcare through the option of virtual appointments:

if I was at work and I needed an appointment, I wouldn’t have my car and then I’d have to sort out or change my routine, and, as an autistic person, it’s a huge change to my routine that I don’t like, I don’t want to deal with. It kind of removes that stress. (Ali et al., 2023)

Consistency and predictability

Another element discussed in the studies regarding adaptations to improve autistic adults engagement was to ensure consistency and predictability as changes could be ‘unsettling’ (Parmar et al., 2022). Many autistic adults talked about the importance of consistency or continuity of care to them (Mason et al., 2021; McMillion et al., 2021; Talcer et al., 2023), particularly in relation to consistency of the professionals they saw because it allowed them to build rapport with and trust in the professional:

I think for anyone, but especially for someone who’s autistic I think that having continuity of care is so important. (Pentz et al., 2023)

In addition to needing consistency, studies highlighted how participants favoured predictability and being informed about both the environments they would be entering and the procedures they would be involved in ahead of their appointments. For many, this was a really important factor in reducing anxiety and helping them to access services:

now I’ve got the information, I’m not anxious about it anymore . . . And it’s a tiny little adjustment from their end, but it lowers my anxiety on a day-to-day basis. (Parmar et al., 2022)

The way this information was provided was important. For some participants, the preference was to ensure that ‘everything is in writing’ (McMillion et al., 2021) while others preferred it to be presented visually in the form of pictures or videos so that they ‘didn’t have to guess what the tests or equipment may be like’ (Parmar et al., 2022):

it was just like ‘Oh, they really understand my needs’ because they had photos and biographies of everyone you were likely to meet, they had photos of all of their consulting rooms, a map, a photo of the outside of the building, so it was as if they anticipated all of the things that were likely to worry me. (Harmens et al., 2022)

These adaptations and pre-emptive planning of supporting autistic adults to be informed of their appointments in advance was experienced as extremely important for reducing anxiety and thereby supporting engagement (Babb et al., 2021; McMillion et al., 2021; Parmar et al., 2022):

I never would have thought, prior to finding out about my autism and everything, that this sort of stuff would be helpful for me . . . I’m surprised much how less anxious I feel. (Parmar et al., 2022)