Booking and waiting can already be hard: how research maps autistic adults’ experiences in outpatient physical healthcare and bodily examinations

Byline: Chau Sir / chausir.com

This article summarises public research with AI assistance.

1. What this study did

Hedlund (Department of Caring Sciences, University of Gävle, Sweden), with Andersson, Lindberg, and Jordal, published a scoping review in International Journal of Nursing Studies Advances, volume 9, article 100366, on 10 June 2025 (received 29 November 2024; revised 27 April 2025; accepted 9 June 2025). Following the Arksey and O’Malley framework and reporting against the PRISMA 2020 checklist, they searched four databases in March 2024: Medline via EBSCO, CINAHL, Scopus, and Web of Science. They included peer-reviewed English-language studies published from 2014 onwards whose participants were autistic people aged 18 or over, and that reported those adults’ own experiences or views of physical healthcare. Of 4396 records first identified, 1367 duplicates were removed, leaving 3029, and 16 studies were included, published between 2015 and 2024, most of them between 2022 and 2024. Most studies came from the United Kingdom (5) and the United States (4), with others from Canada and the Netherlands, and from collaborations involving Belgium, Australia, and Ireland. Seven were qualitative, six quantitative, and three mixed-methods. Most did not name a specific setting, but appeared to involve various outpatient clinics; among those that did name a setting, primary care was the most common (5), with other work including optometry. [1]

2. What the literature maps

The literature map organises these accounts into four layers: how healthcare organisations work (15 studies), rooms and spaces (11), interactions with staff (15), and bodily examinations and care procedures (only 2). Descriptions that more often appear together include: systems that are hard to understand, difficulty booking and speaking on the phone, long or unpredictable waits, a wish to communicate in writing or electronically, a wish to see the same person again, and a wish to know in advance what will happen. Light, noise, and crowded waiting or consultation rooms more often appear together with discomfort, distraction, and greater difficulty talking. Staff knowing little about autistic traits, treating adults like children, and speaking too quickly or too vaguely are also often mentioned; some people feared being judged negatively, and delayed seeking care. Evidence on bodily examinations and care procedures is thin; existing accounts mention that sudden steps, unexpected touch, and strong smells can feel very uncomfortable, while clear advance information, a pace the person can influence, and familiar staff more often appear together with a greater sense of safety. This is a map of existing literature, not proof that changing any one clinic arrangement necessarily makes visits more comfortable for every autistic adult. The points above are associations and gaps only; causation cannot be read directly from this kind of design. [1]

3. Reading caveats

This is a scoping review. Its aim is to map the literature, not to compare whether any one outpatient arrangement works well. The included studies are concentrated in Europe, North America, and Australia, only English-language papers were included, and only four databases were searched. Healthcare systems differ across places, and the findings are harder to extend to autistic adults who also have an intellectual disability. The authors also left out services designed only for autistic people, so this map mainly reflects ordinary outpatient and physical healthcare services. Bodily examinations and care procedures appear in only two studies, and there is even less material on inpatient physical care. This review is not proof that changing any one way of booking, waiting, or communicating necessarily makes visits more comfortable for every autistic adult. Each adult’s experience is different, and research is not a complete picture of any one person. [1]

4. How Hong Kong parents might take this

A familiar Hong Kong scene: booking a public general outpatient or specialist clinic appointment by phone, sitting for a long time in a crowded, brightly lit waiting area, and then having only a few minutes once called in; an autistic teen or adult may not be able to say clearly, on the spot, what feels wrong in their body, and a parent sitting beside them may be asked one question and end up answering everything. Some people feel that “seeing a doctor means speaking quickly and not being a bother.” The value of this scoping review is shifting the lens from “only the emergency department is hard” to “booking, waiting, and outpatient bodily examinations can themselves be hurdles.” The literature map shows that written or electronic communication, waiting spaces with less sensory load, a predictable process, and seeing the same person more often appear together with accounts of visits that felt more manageable. For Hong Kong parents, it may help, before accompanying an older child to a clinic, to write down together the questions and bodily concerns to raise; to ask whether the clinic can be contacted in writing or electronically, rather than only by phone on the spot; and, once there, to ask whether there is a quieter waiting place, and what is likely to happen this time.

Chinese families sometimes feel that “leaving a written note is a bother, and only a face-to-face talk with the doctor counts as serious”; the literature map instead suggests that writing things down in advance, and asking about the process, is already a reasonable way to walk alongside the person. The research is a reference only. Every family has its own pace, and there is no need to blame yourself or every person in the clinic. If follow-up visits or bodily examinations keep weighing heavily on the person and the family, you can ask parent groups or family support services about ways to walk alongside them; this review is not asking parents to redesign healthcare processes themselves. If there is an immediate crisis, call 999 or the Mental Health Support Hotline 18111.

From the angle of CRP (Communication, Relationship, Parenting), you might start with communication and relationship: an adult and the young person can write down together the bodily concerns and questions they want to raise, and keep a more predictable pace, rather than having to say everything in a rush on the spot. The research is a reference only. Each family can walk alongside the person in a way that feels comfortable.

Sources

1. Hedlund, Å., Andersson, A., Lindberg, M., & Jordal, M. (2025). Experiences and perceptions of physical healthcare among adult autistic patients: A scoping review. International Journal of Nursing Studies Advances, 9, 100366. https://doi.org/10.1016/j.ijnsa.2025.100366 (publisher page: https://www.sciencedirect.com/science/article/pii/S2666142X25000736; open access, CC BY 4.0: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12205838/)

Disclaimer

Educational information, not a diagnosis or medical advice.

Chau Sir’s talks and articles are parent education. They do not provide diagnosis, assessment, or treatment, and they do not give medical or medication advice. If you need that kind of support, please consult a qualified professional.