Kick-off of a series about artefacts from my master’s thesis, which I never finished. The post on epistemic justice can be read as a form of introduction; the provisional criteria matrix is available here as a searchable table. I would be glad to work on this topic together with others. Note: the work presented here has not been peer-reviewed and has potential for revision in many places; what matters to me is the fundamental direction — understanding autistic perspectives and working on solutions.
“I feel so overwhelmed from the process of visiting the doctor (being around people/sensory overstimulation in the waiting room [and] anxiety/communication difficulties) that I just have to flee outside and can’t face spending any more time in the doctors or talking to the receptionist.”
This quote from an autistic person comes from a survey by Shaw et al. (2024). It captures situations that are common in care: unpredictability, a different member of staff each visit, many people, bright light, confusion of layout, time pressure, impatience, stigma, prior negative experiences, and the challenge of grasping and interpreting the many layers of communication involved, often without the fitting mental models at hand, with a brain built for deep attention to a few areas. For everyone involved this carries particular challenges, but also opportunities — at the place where autistic patients can receive low-threshold support and advice: the pharmacy and suitable digital structures.
How big is the issue?
What is certain is a high number of undiagnosed cases: many adults are diagnosed late or never. In at-risk populations the group is large: in a Swedish psychiatric outpatient clinic, at least 18.9% of the patients met the criteria of an autism spectrum condition, up to 35 % under certain assumptions (Nyrenius et al., 2022). A Swedish birth cohort study of 2.7 million children found that by 2022, 2.8% had an autism diagnosis; among twenty-year-olds the male-to-female ratio was 1.2 to 1, close to parity (Fyfe et al., 2026). Within the professional world, the rising diagnosis rate is not uncontested, with respected autistic researchers tending rather to defend the diagnosis rates.
What role does the pharmacy play?
It is a place of care where sensory input, communication and professional matters converge. And it is the place where autistic patients may receive pharmacological support for psychiatric and other comorbidities, often with a presentation that deviates from typical expectations (atypical pain presentation, interoception differences, masking, and so on), where preventive services are growing, and where a delineation from self-medication cases is taking place. The currently only practice guideline for pharmacists on autism Kadi et al., 2024 therefore calls for communicative tools for consultation and environmental measures in the pharmacy itself.
From compliance to patient-centredness
The basis of this post is a criteria matrix from my master’s thesis on pharmaceutical care for autistic patients. Its argumentative starting point lies well before the topic of autism: with the understanding of quality in pharmacies themselves.
Classical quality management systems (QMS), as they are common in German pharmacies, tend to be (not only!) compliance-oriented: they aim at meeting regulatory requirements, documenting processes formally and securing accountability (Bundesvereinigung Deutscher Apothekerverbände [ABDA], 2015; Neidel, 2021). Other quality frameworks — from the Good Pharmacy Practice (GPP) of World Health Organization & Fédération Internationale Pharmaceutique [WHO & FIP] (2011) through DIN EN 15224 (Deutsches Institut für Normung, 2017) to ISO 7101 (International Organization for Standardization, 2023) and the empirically validated quality dimensions of Hindi et al. (2024) — define quality more (not only!) in terms of clinical outcomes and patient-centredness. This does not mean regulatory compliance matters less; it means the understanding of quality is widening. My work first compared these frameworks and described their differences as axes of tension and development: compliance to excellence, product-centredness to patient-centredness, the frequency of learning cycles, the presence of feedback loops, cultural factors.
The step to the autism matrix is this: if quality is defined through patient outcomes, the question arises for whom these outcomes apply and what requirements these people have. People who depend on specific adaptations — autistic people and many others — are not explicitly and systematically considered in existing QMS. A QMS that takes process conformity as a proxy for care quality and measures itself against it is not modern; and our incentive structures are currently not designed wisely. Equity is not a side note but a recognised quality dimension — named by the Institute of Medicine (2001) and set out as Goal 10 of the FIP Development Goals for the international pharmacy profession (International Pharmaceutical Federation, 2020).
Back to the actual topic: what does modern, patient-centred pharmacy quality mean, in theory, when it starts from autistic patients?
This may sound like a niche concern, but much of what helps autistic people helps many (the curb-cut effect). And how urgent it is, a German study shows: for autistic adults without intellectual disability, the group mean of mental health-related quality of life was 1.72 standard deviations below the population mean, i.e. around the 4.3rd percentile (own calculation from M = 32.8 versus the norm T = 50; David et al., 2025). The strongest predictor of this mental quality of life was perceived barriers to healthcare; as the only variable, they explained variation in both domains, mental and physical (further significant predictors in the mental domain were comorbidities and age at diagnosis). The study design is cross-sectional — whether removing barriers shifts quality of life must therefore be read as a hypothesis, not as a proven effect. But it is precisely this hypothesis that grounds the matrix: barriers are the changeable part of the equation.
Method and limits
How did the matrix come about? I reviewed the literature on autistic needs in healthcare in a structured way — deliberately including literature by autistic researchers. Within the concept of epistemic justice, this was the compensatory component for me; nothing like it exists for the pharmacy context so far. In parallel I explored other aspects of the topic, such as personas and use-case modelling with SEIPS 2.0 (a model for analysing work systems in patient care).
Below I present the four main categories with a selection of quotes — the details are in the table.
K-1: The environment
The sensory and spatial environment, appointments and waiting times, and what happens when it becomes too much.
“I’m really sensitive to bright lights and smells – in particular, those two things” (McLean et al., 2024)
“Also, certain noises or pitches and all of those are difficult in pretty much every healthcare setting” (McLean et al., 2024)
“I just could not get there…but getting there was one of the hardest things once you get there it’s very, oh my gosh, is it challenging to navigate you have to go to this desk these receptionists and you don’t know they’re not very…” (McLean et al., 2024)
“And so, you try to put me in a big open waiting room and I have to make decisions like where to sit down, how to, how to navigate it” (McLean et al., 2024)
“Sometimes I feel like if I don’t get out I will just burst into tears in the reception area” (Shaw et al., 2024)
Pharmacies increasingly offer services with appointments — the parallel to the appointment logic of other care settings is not far-fetched. And the pharmacy has a high sensory density. The literature is unambiguous here: background noise, reverberation, flickering or harsh light, strong patterns and fragrances can create stress and severely impair listening and self-perception (Doherty et al., 2023; Kadi et al., 2024). The SPACE framework by Doherty et al. summarises the core needs in five letters: Sensory needs, Predictability, Acceptance, Communication, Empathy.
The corresponding design principles in shorthand: actively reducing sensory input, spatial separation and regulation, predictable low-sensory scheduling, de-escalation safety.
K-2: Communication
“I always keep notes on somewhere that I can jot down questions that I might have, and I go in with notes because I find that otherwise I leave feeling like I’ve been through a whirlwind, and I haven’t gotten any answers because I think a lot of providers just go so fast” (McLean et al., 2024)
“I think the hardest thing going into healthcare provider you know, medical, mental health or physical appointments is um making sure that I write down all of the, the possible, so ahead of any kind of appointment for weeks ahead, or months, or whatever it is you know” (McLean et al., 2024)
“It’s, it’s not great though, because I also have an auditory processing diagnosis so it’s hard for me to, when they’re speaking super-fast and going through everything and they’re constantly interrupting um, so I feel like I need to have that physical list in front of me to be able to make sure that I’m going through everything and that they don’t always let me get through the list and that’s really frustrating also, because if I took the time to really think about it and write it down” (McLean et al., 2024)
The pharmacy is a communication space at a high tempo: short consultations, dense content, high relevance. The guideline’s recommendations (Kadi et al., 2024) on visual aids, written backup and extended decision and response times connect directly here. The corresponding design principle (multimodal communication) demands that information be provided in a durable, adapted form: not just once and orally, but in writing in advance, visually supported during the conversation, and comprehensibly documented.
At this point AI applications are conceivable — for example a tool that generates a written summary from the consultation request in advance. Before deployment in a pharmacy, the same questions would have to be answered as for any other aid: which patients it fits, what it breaks when it errs, and who carries responsibility. Following the pattern of Obermeyer: a tool that optimises the adaptation only for the average repeats the proxy error.
K-3: Attitude, knowledge and interpretive authority
“Rude receptionists that don’t understand neurodiversity and treat me like garbage” (Shaw et al., 2024)
“GPs treat me like a stupid child & assume I don’t understand what is being said to me because they know I have autism” (Shaw et al., 2024)
“A sympathetic and understanding GP means I feel less anxiety at appointments means I will be willing to go to the doctors when needed” (Shaw et al., 2024)
“I mean healthcare is like another job interview, it’s another social environment in which if you don’t play by the right rules, you’re not going to get what you need” (McLean et al., 2024)
The job-interview metaphor describes precisely what masking means in healthcare: a social performance that costs energy, and whose failure costs access to care itself. Its counterpart in the literature: neurodiversity-affirmative approaches that understand autism not as a deficit but as a variant of human neurology — “Autism is not a mental illness”, as Shaw et al. (2022) put it.
K-4: Specialised pharmaceutical care
The fourth category gathers particular and atypical requirements for pharmaceutical care. Four examples:
“I ended up with peritonitis from a ruptured appendix because I did not recognise appendicitis symptoms as serious enough to justify making an appointment” (Shaw et al., 2024)
“There was a loose splinter of a bone and it was painful but I could not express my pain in a ‘normal’ way so nobody took it seriously” (Shaw et al., 2024)
“Eye contact with the doctor stresses me out a lot, but I fear they won’t believe me if I’m not making eye contact” (Shaw et al., 2024)
“I don’t have a resilient network of support” (McLean et al., 2024)
These quotes show the risk that arises when an atypical symptom presentation meets expectations derived from neurotypical patterns. The pharmacy matters here: it is the place where painkiller queries, over-the-counter (OTC) consultations and medication management reach autistic patients without a diagnosis. What is needed is the ability to recognise atypical presentations (interoception differences, atypical pain expression, frequent self-medication attempts).
What needs to happen now
The picture is mixed. On one side, the pharmacy is well positioned compared to other care settings: often small and manageable, accessible without an appointment, stable staffing. On the other side, the criteria matrix documents precisely where care for autistic patients breaks today: sensorily, communicatively, structurally, in attitude. These two sides stand in tension — the very openness and appointment-freedom that make the pharmacy accessible create the unpredictability that K-1 identifies as the main burden. Resolving this contradiction (for example through optional appointment slots for sensitive consultations) is part of the task.
The 17 design principles attempt to formulate actionable design briefs from this finding. They all follow the format of Gregor et al. (2020): for whom (implementers), with what goal, for whom (users), in which context, through which mechanism, with what rationale. One example:
DP-1 (K-1.1): For pharmacy operators and space planners, to reduce sensory overstimulation for hypersensitive autistic patients in waiting and consultation areas, use structural and design measures to minimise background stimuli. Because autistic people often perceive sensory inputs unfiltered and cumulatively, which without shielding leads to distress and meltdowns (Doherty et al., 2023; Kadi et al., 2024).
The complete matrix with all criteria, quotes and design principles is available as a searchable table.
The comparison with the guideline
How much of this is original? To answer that, I compared the matrix against the only practice guideline for pharmacists on autism that I am aware of: Kadi et al. (2024), a three-step model (assess and involve the patient, communication strategies, check the infrastructure for sensory load). The comparison — search terms in both languages, checked against the full text — shows two things. One caveat matters: a concept can be present even when the term is absent; the question is whether the guideline addresses the concern. In the following fields it does not, not even under other names:
| Concept (explicitly addressed? no) | In the matrix |
|---|---|
| Double Empathy Problem | Understanding problems, bi-directional empathy bridge |
| Monotropism | Attention focus as a design principle for environment, appointments, communication (Lawson, 2024) |
| Autistic Burnout | Stimming, challenging behaviour and masking (K-3.2.2.4) |
| Masking / Camouflaging | Attitude and training topic |
| Stimming | Understanding and affirmation: stimming is needed, not suppressed |
| Meltdown / shutdown crisis management | Own criterion: crisis intervention for sensory overload |
| Interoception | Individual needs, atypical presentations |
| Co-design / participation | Participatory service development |
| Waiting time management | Appointment design and waiting options |
| Neurodiversity-affirming attitude | Guiding principle and respectful language |
| Preference elicitation as a process | Systematically documented individual needs |
The core difference: Kadi stays within a conventional division of roles. The pharmacy adapts its communication and its rooms, but the expertise remains on the pharmacy side. The matrix turns the direction around: the understanding and attitude dimension (double empathy, neuro-affirmation, co-design) as well as the operationalisation of monotropism and meltdown competence into concrete environmental criteria only emerge when autistic people are taken seriously as experts of their own care. Good design for autistic people is good; good design with autistic people is better — precisely the epistemic justice of the groundwork post.
What Kadi has, and what the matrix deliberately covers less strongly: diagnostic criteria (DSM-5) as an overview, concrete substance lists for the pharmacology of comorbidities, side-effect monitoring, and a clear focus on children and adolescents. The two documents complement each other.
Sources
- Bundesvereinigung Deutscher Apothekerverbände. (2015). QMS-Mustersatzung (ABDA).
- David, N., Rahlff, P., König, H., Dückert, S., Gewohn, P., Erik, F., Vogeley, K., Schöttle, D., Konnopka, A., Schulz, H., & Peth, J. (2025). Barriers to healthcare predict reduced health-related quality of life in autistic adults without intellectual disability. Autism, 29(2), 476–489. https://doi.org/10.1177/13623613241275406
- Deutsches Institut für Normung. (2017). Quality management systems — EN ISO 9001:2015 for healthcare; German version EN 15224:2016 (DIN EN 15224:2017-05). Beuth.
- Doherty, M., McCowan, S., & Shaw, S. C. K. (2023). Autistic SPACE: A novel framework for meeting the needs of autistic people in healthcare settings. British Journal of Hospital Medicine, 84(4), 1–9. https://doi.org/10.12968/hmed.2023.0006
- Fyfe, C., Winell, H., Dougherty, J., Gutmann, D. H., Kolevzon, A., Marrus, N., Tedroff, K., Turner, T. N., Weiss, L. A., Yip, B. H. K., Yin, W., & Sandin, S. (2026). Time trends in the male to female ratio for autism incidence: Population based, prospectively collected, birth cohort study. BMJ, 392, Article e084164. https://doi.org/10.1136/bmj-2025-084164
- Gregor, S., Kruse, L., & Seidel, S. (2020). Research perspectives: The anatomy of a design principle. Journal of the Association for Information Systems, 21(6), 1622–1652. https://doi.org/10.17705/1jais.00649
- Hindi, A. M. K., Campbell, S. M., Jacobs, S., & Schafheutle, E. I. (2024). Developing a quality framework for community pharmacy: A systematic review of international literature. BMJ Open, 14(2), Article e079820. https://doi.org/10.1136/bmjopen-2023-079820
- Institute of Medicine. (2001). Crossing the quality chasm: A new health system for the 21st century. National Academies Press.
- International Organization for Standardization. (2023). Health care organization management — Management systems for quality in health care organizations (ISO 7101:2023).
- International Pharmaceutical Federation. (2020). FIP Development Goal 10: Equity & Equality. FIP.
- Kadi, R., Gayed, F., Kauzman, P., Amam Ali, Z., Dmitriev, I., Mikhael, V., Ghabi, R., Hamamji, J., Jabbour, S., Mrchak, M., Guirguis, N., Metras, M., Becciolini, L., Vassel, F., Gutzeit, A., Cresson, J., Froehlich, J. M., Higgs, T., Dufour, M., & Matoori, S. (2024). Autism spectrum disorder: Practice guidelines for pharmacists. Canadian Pharmacists Journal, 157(2), 58–65. https://doi.org/10.1177/17151635241228495
- Lawson, W. B. (2024). Autism and being monotropic: What medical and other practitioners need to know. Springer. https://doi.org/10.1007/978-981-96-2564-2
- McLean, K. J., Haas, M., Koenig, J., Horvath, M., Vigil, M., Werner, N. E., & Bishop, L. (2024). “I’m dealing with a health care system that doesn’t get it”: Barriers and facilitators to inclusive healthcare for autistic adults. Autism, 28(6), 1382–1393. https://doi.org/10.1177/13623613241236380
- Neidel, D. (2021). Qualitätssicherung [Quality assurance]. In P. Schäfer (Ed.), Allgemeinpharmazie: Ein Lehrbuch für Praktisches Jahr, Weiterbildung und Apothekenpraxis (pp. 714–722). Wissenschaftliche Verlagsgesellschaft.
- Nyrenius, J., Eberhard, J., Ghaziuddin, M., Gillberg, C., & Billstedt, E. (2022). Prevalence of autism spectrum disorders in adult outpatient psychiatry. Journal of Autism and Developmental Disorders, 52(9), 3769–3779. https://doi.org/10.1007/s10803-021-05411-z
- Obermeyer, Z., Powers, B., Vogeli, C., & Mullainathan, S. (2019). Dissecting racial bias in an algorithm used to manage the health of populations. Science, 366(6464), 447–453. https://doi.org/10.1126/science.aax2342
- Shaw, S. C. K., Carravallah, L., Johnson, M., O’Sullivan, J., Chown, N., Neilson, S., & Doherty, M. (2024). Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 28(7), 1746–1757. https://doi.org/10.1177/13623613231205629
- Shaw, S. C. K., Doherty, M., McCowan, S., & Eccles, J. A. (2022). Towards a neurodiversity-affirmative approach for an over-represented and under-recognised population: Autistic adults in outpatient psychiatry. Journal of Autism and Developmental Disorders, 52(9), 4200–4201. https://doi.org/10.1007/s10803-022-05670-4
- World Health Organization & Fédération Internationale Pharmaceutique. (2011). Joint FIP/WHO guidelines on good pharmacy practice: Standards for quality of pharmacy services.
The formulation of the design principles follows Gregor et al. (2020).