ABSTRACT
Cancer care, with its complex and variable protocols, frequent appointments, and high‐stress, may present additional challenges for neurodivergent patients, and suitable care accommodations are necessary. Yet, a dearth of literature and an associated understanding on neuro‐inclusive cancer care exists. The current case study aims to: (1) explore and identify barriers and challenges to neurodivergent cancer care; and (2) generate neuro‐inclusive oncology‐specific recommendations to guide healthcare providers in offering neuro‐affirming care. To do this, we present the first author's lived experience navigating stage IV breast cancer as a neurodivergent individual and psychologist, exploring barriers and challenges encountered. Her personal and professional experience uniquely positions her to offer insights into this intersection. Based on her experience, and complemented by published data, we generate recommendations for neuro‐inclusive care. Challenges and barriers identified include limited oncology provider knowledge, awareness, and tolerance of neurodivergence, and insufficient suitable accommodations to difficulties with standard care practices. Recommendations encompass six domains: patient communication, physical environments, physical pain, administrative approaches, technology usage, and systemic revisions. Clinical, training, and research recommendations and implications are reported. Clinical implications include raising awareness around the lack of neurodivergent‐affirming cancer care. We highlight the need for neuro‐inclusive training for all staff interacting with neurodivergent patients. Such training should be embedded into graduate programs and professional development. We call for co‐designed training (development and delivery) and research, and highlight the lack of current available research. We note the need for empirically driven universal guidelines for neuro‐inclusive oncology care, which we hope will be informed by the present study.
Keywords: attention‐deficit/hyperactivity disorder, autism (autism spectrum disorders), cancer, mental health, neurodivergent, oncology (general)
1. Background
Approximately 15%–20% of people are neurodivergent, encompassing diagnoses such as autism, attention deficit/hyperactivity disorder (ADHD), intellectual and developmental disabilities (IDD), and learning disabilities [1]. Cancer, which affects approximately 40% of individuals over the lifespan (National Cancer Institute, 2025), is a leading cause of death among autistic people [2], and those with IDD [3].
Neuro‐inclusive cancer care remains insufficiently researched, despite known adverse physical and psychological outcomes [4, 5, 6] and barriers/challenges in navigating the healthcare system, such as poor hospital experiences and reduced healthcare quality [7, 8, 9]. In turn, oncology providers report obstacles in delivering neuro‐inclusive care, such as inadequate time, training, resources, and care fragmentation [10].
Specialist guidelines for neurodivergent‐inclusive care are emerging, such as for anaesthesia [11], medical imaging [12], and primary care [13]. Yet, no oncology‐specific guidelines exist. This is critical given cancer care, with its complex and variable protocols, frequent appointments, and high‐stress environment, presents additional challenges for neurodivergent patients, warranting suitable accommodations [14].
To promote guideline development, we present the first author's lived experience of navigating cancer as a neurodivergent individual and psychologist, exploring encountered barriers and challenges. Her personal and professional experience uniquely positions her to offer insights into this intersection. Based on her experience, and published research, recommendations for neuro‐inclusive care are provided.
2. Case Description
Rebecca (Bec) is a 34‐year‐old late‐diagnosed neurodivergent woman, psychologist, and cancer patient. Her professional area of expertise is working with neurodivergent individuals, providing clinical supervision and training to mental health practitioners in neurodiversity‐affirming psychological practice and interventions. Due to undiagnosed Autism and ADHD (diagnosed at 32 years old), throughout her life, Bec experienced mental health difficulties. In 2024, she was diagnosed with stage IV breast cancer, less than two years after learning of her neurodivergence and connecting with this new identity. Throughout the treatment process, the care that Bec received was insufficiently tailored to the needs of neurodivergent individuals, thereby compounding an inherently distressing ordeal.
2.1. Barriers and Challenges
2.1.1. Neurodivergent‐Specific
Throughout appointments, Bec's neurodivergence went overlooked, resulting in pressure to comply with social expectations, including eye contact and engaging in small talk to appear cooperative, leaving her exhausted. Her masking and apparent calmness were mistaken for coping.
In consultations, my neurodivergence was not acknowledged unless I raised it, likely because I’m female, have low‐support needs, mask my symptoms, and received late diagnoses (Autism; ADHD), making my neurodivergence invisible. Due to minimal neurodivergent awareness in oncology, professionals equate appearing “normal” with not requiring support. My efforts to appear functional became grounds for support omission or denial. Unlike some neurodivergent people with visible high‐support needs, who have existing supports, I’ve had to engage in effortful self‐advocacy and make my needs seen/known.
In appointments, which were often brief, Bec received large amounts of information, delivered via vague and rushed verbal instructions without time for clarification or information‐processing. Furthermore, for Bec, unexpected calls about scheduling and test results created uncertainty and anxiety. Amplifying this were inconsistent weekly hospital appointments booked at short notice, without scope for accommodating preferences, which impacted her sense of control and routine.
With accommodations unavailable, the unfamiliar, unpredictable, and sensory‐overwhelming hospital environment was dysregulating (e.g., fluorescent lights, loud machines, strong chemical smells, concurrent conversations, high foot‐traffic). Bec found physically navigating the unfamiliar hospital environment overwhelming. This encompassed attending appointments in various locations without directions, parking instructions, or contact numbers. This logistical confusion compounded existing anxiety.
Bec's appointments were frequently scheduled with different unfamiliar oncologists without prior notice. While these diverse providers had access to her notes, it also promoted a sense of discontinuity of care.
I’ve felt exhausted by having to repeatedly share my story and explain what neurodivergence is to professionals. Initially, when I disclosed my neurodivergence and mental health history, I felt like an inconvenience to the treating team due to my “complexity”. This left me afraid to speak up or ask for accommodations. The shame I felt pressured me to mask my distress. I didn’t want to share my story with new clinicians, as I felt that it would be met with further invalidation or not perceived as clinically relevant.
In medical records, Bec's neurodivergence was either omitted or listed as a treating condition.
In my clinical notes, my neurodivergence was listed as a “medical condition” implying that there is something ‘wrong with me’ requiring treatment and change. This deficit‐based language wasn’t neuro‐inclusive or neuro‐accepting care. At other times, it wasn’t noted at all, making it seem unimportant. Both situations were painful to see.
Not only did Bec encounter interpersonal and communication challenges, but medical procedure difficulties and non‐individualised care, too.
I experienced difficulties with physical examinations and needles and felt that there was an assumption from the treating team that I was just meant to do all those things like everyone else. I’m unsure whether it’s de‐sensitisation or a lack of neurodiversity awareness and knowledge, but either way, trauma‐informed care in these situations was lacking. This is extremely important given a person’s vulnerability when exposing their breasts to an unknown person.
2.1.2. Universal Concerns With Heightened Importance for Neurodivergent Individuals
While these are systemic experiences, universal to many undergoing cancer care, for the neurodivergent individual, they may amplify heightened distress.
Bec's mental health team was excluded from communication by her physical health oncology providers.
Updates regarding my prognosis and health were not communicated to my mental health team, which was important, given that it led to my mental health worsening. I was left to disseminate this news that I wished I didn't have to.
Relative to Bec's physical pain, her mental health was overlooked.
Selective attention exists to pain: I’m often asked, “are you in pain?” but I know this refers to physical pain, not psychological. If physical pain warrants consistent monitoring and intervention, shouldn’t psychological pain too?
Bec received life‐changing news by providers in clinical spaces (e.g., oncologist office, hospital bedside) that offered little emotional support, privacy, processing time, or accommodations to her neurodivergence before being expected to make decisions or leave.
I was often required to leave consultations distressed, without immediate support or mental health follow‐up. On one occasion, after receiving life‐changing results, the consultation ended whilst I was visibly upset. I was ushered out the door and required to walk through a waiting room full of patients. Over the following days, I experienced heightened suicidal ideation that the oncology team were unaware of. When I was visibly upset, oncologists either displayed clinical detachment or were awkward and looked like they had no idea what to say/do. They were unable, unwilling, or perhaps untrained to communicate this news and subsequently accept, tolerate, and hold my distress.
At other times, Bec found that life‐changing test results were abruptly conveyed without pre‐emptive conversation or attempts to be discrete in delivery.
2.2. Reflections
I would have liked professionals to try and be neuro‐inclusive. I know that the cancer treatments I’m receiving cannot change, yet accommodations to the interpersonal interactions and systemic protocols punctuating them can. As a mental health professional, if my experience has been difficult, I fear for those neurodivergent individuals without these advantages—those who lack the capacity to self‐advocate. Despite challenges, many small and large changes could transform neurodivergent cancer care.
3. Recommendations
Informed by the first author's lived experience and supported by research, Table 1 provides recommendations for the oncology workforce (e.g., providers, ancillary staff, hospital management) to deliver neuro‐affirming care).
TABLE 1.
Recommended accommodations for providing neuro‐inclusive oncological care.
| Concern for care | Recommendation |
|---|---|
| Patient communication | |
| Neurodivergence is associated with social and communication differences. For example, for some, there may be disinterest/displeasure in small talk or associated anxiety. Positive, effective communication between provider and neurodivergent (ND) individuals is needed as adverse implications of difficult communication exist e.g., patient misunderstanding, diminished rapport, sharing/documenting inaccurate medical data [17, 18]. |
Person‐centred care/communication
Understanding the patient (through direct questioning): Identify, document, and share (with the care team) patient ND presentations, preferences, (in)effective strategies, and key concerns. This information can be shared with the care team who can subsequently monitor symptoms, allowing for early identification and supportive intervention.
|
| Existing patterns of information sharing may not suitably accommodate the ND patient. This includes information generally being shared verbally. It also includes administrative tasks associated with healthcare (e.g., making appointments, following up on medications, etc) being made via the phone, which can be a barrier to care, as some ND individuals dislike phone calls, finding unexpected calls difficult, and will not answer [22, 23, 24]. Some ND individuals are very tech savvy. This can be utilised to enhance patient care; however, it requires understanding the patient's strengths and preferences. |
Learning and information presentation preferences/needs
|
| Recognising that ND people have different cognitive profiles, communication should aim to meet these needs to maximise clarity. |
Direct, clear, and concise communication
|
| ND patients' are burdened by having to repeat their mental health story [25]. |
A multidisciplinary team Effective documenting, communicating, and sharing of patient information with their multidisciplinary team. Managing and coordinating the team's expectations can mitigate challenges [14]. This may include regular team meetings, sharing patient preferences, and including the patient's mental health practitioner (even if they work at a different institution). |
| Cancer diagnosis and treatment are inherently distressing, and may be more so for the ND individual given that ND and mental health conditions are closely intersected. For example, over 60% of autistic people, including autistic children, have a diagnosed co‐occurring mental health condition [6]. For some ND patients, this may include symptoms of emotional sensitivity and heightened emotional responses. |
Cancer care that is sensitive to mental‐health (i.e., psycho‐oncology) Clinicians should consider mental health within cancer care in order to provide appropriate support.
|
| Certain ND populations (e.g., autism) are more likely to experience trauma and adverse life experiences, so care should be trauma‐informed [26]. |
Trauma‐informed care
|
| The healthcare system is not designed for neurodivergence, and can create sensory overload, communication barriers, and power imbalances, potentially leading to adverse outcomes such as poor health and care avoidance. |
Encouraging social supports Support people can assist with promoting feelings of safety, comfort, and emotion regulation. They can also facilitate communication, collaboration, patient advocacy, and may support the patient with information‐processing. Whether social support be in the form of a hospital‐provided patient advocate or a part of an existing support network (e.g., family/friend), ND people should be able to and encouraged to bring along advocates/support people wherever possible. Consideration of supporting people's input and insights should be taken into account. |
|
Offering ND patients with a hospital‐provided patient advocate
| |
| Physical environments | |
| Hospitals can be sensory dysregulating environments with bright lights, noise, many people etc. |
Accommodations to physical environments
|
| Unfamiliarity and changes to routine can be dysregulating for some ND individuals. |
Patients' familiarisation with the clinical team, physical spaces, and treatments Providing orientation information to ND patients [30] before consultations, tests, or treatments may ease anxiety, so the patient has a degree of familiarity of what they are looking for on their first appointment. For example:
|
| Physical pain | |
| Understanding that ND people can experience physical pain differently [31]. This includes high pain thresholds and the presentation of mismatched affect in situations where outward expression of pain would be assumed. |
Physical pain management considerations and accommodations
|
| Administrative approaches | |
| Hospitals' standard brief and efficient consultations may not accommodate ND patients' needs. In particular, inconsistent hospital staff can negatively impact the ND patient, resulting in frustration, reduced trust, and rapport. |
Extended appointment times: Offering longer appointments to enable information‐processing and rapport building. Appointment continuity: Where possible, schedule regular appointments on the same day and at the same time each week/month to create predictability. Patients can be asked if they have a preferred appointment time and day.
Scheduling appointments: Provide appointment scheduling options and allow ND people to make informed choices about when to schedule. Example scheduling options include:
Continuity of care and a treatment team
|
| Extensive medication regimes may be tedious, confusing, and difficult to remember. |
|
| Systemic revisions | |
| A lack of knowledge, understanding, language, and expertise among healthcare professionals or dated knowledge of ND conditions [10, 25]. |
Education and training Training, not only for professional staff, but ancillary staff liaising with patients. Preferably training and education would be part of ongoing professional development. Training needs to include research, theoretical, and clinical elements. Training content development and delivery would ideally include those with a lived experience. Critically, training also needs to consider that prevalence rates are often in flux and vary according to new understanding and shifts in diagnostic criteria. Education and training programs should include the following:
|
| Currently, no ND‐specific resources exist to guide cancer care. |
Develop evidence‐based ND‐specific oncology clinical implementation tools and training toolkits These may include:
|
| ND accommodations should not be static, but open to patient feedback and evolving knowledge. |
Receptivity to feedback Openness to change, adjustments, and learning based on:
|
| Trauma is not exclusively an intrapersonal or interpersonal issue [46], but can occur at the organisational/structural/collective level rooted in oppression. Developing trauma‐informed organisations will likely reduce the risk of ND re‐traumatisation and enhance patient engagement and outcomes. |
Developing a trauma‐informed organisation and preventing re‐traumatisation
[
46, 47].
|
Abbreviations: AI, Artificial Intelligence; ASD, Autistic Spectrum Disorder; IDD, Intellectual and Developmental Disabilities; LD, Learning Disability; MRI, Magnetic Resonance Imaging; ND, Neurodivergent.
Many of these recommendations would likely improve the quality of care for all people—not just neurodivergent people, though they will have an outsized impact on quality of care for those who are neurodivergent. In addition, applying these recommendations broadly serves to improve the quality of care for undiagnosed neurodivergent people, as many neurodivergent people are still unrecognised today, and is associated with negative outcomes [15, 16].
Given the broad heterogeneity with which neurodiversity presents, application of these recommendations will require flexibility and careful tailoring from clinicians, contingent on the unique circumstances of the patient in question.
4. Implications
Bec's experiences have implications for training, practice, and research. Neuro‐inclusive oncology care and practice should be integrated into graduate programs and form part of ongoing professional development, with such professional training available not only to medical staff, but anyone interacting with ND patients. Naturally, any such training material should be co‐designed with neurodivergent individuals.
With respect to practice, we hope that Bec's story will raise awareness around the current lack of neurodivergent‐affirming oncology care, and that our recommendations are integrated into routine clinical work. In relation to research, we highlight the dearth of literature around neuro‐inclusive oncology, highlighting the need for qualitative and quantitative research to explore the experiences of ND individuals' cancer care. Ideally, such future research should not only include ND participants but be co‐designed alongside ND individuals. Without hearing from people with lived experience, it is unlikely that existing barriers and challenges to neuro‐inclusive care will be meaningfully addressed. We hope the present case study highlights the need for empirically driven universal guidelines for neuro‐inclusive oncology care.
5. Key Takeaways
-
–
ND patients face systemic and interpersonal barriers in cancer care, with lived experience highlighting urgent gaps and risks.
-
–
There is an urgent need for trauma‐informed, collaborative care, and better integration of mental health support.
-
–
Neuro‐inclusive oncology is an understudied area and further research is required.
-
–
The development of formal evidence‐based training and guidelines for healthcare practitioners is required to provide neuro‐inclusive oncology.
-
–
We recommend six key domains for improvements in neuro‐affirming care: Patient communication, physical environments, physical pain, administrative approaches, technology usage, and systemic revisions.
6. Conclusion
Cancer treatment is an inherently distressing process. For neurodiverse patients, the absence of neurodiversity‐affirming guidelines means that this distress will be markedly compounded, causing unnecessary further psychological harm to individuals who already have higher rates of trauma. Neurodiversity‐affirming care will likely reduce trauma and distress in an experience (i.e., cancer care) that is already traumatic for many, resulting in better quality of life for ND patients whilst receiving cancer treatment. Implementing these recommendations would likely make a notable difference on ND patients throughout their cancer journey and emphasise the importance of providing such care, which will begin to challenge years of exclusion, discrimination, and ableism. If neurodivergent‐inclusive approaches are applied, it is likely that ND individuals will seek medical care earlier, receive all necessary treatments, thereby reducing mortality rates and healthcare costs in this population. Clinicians and services could easily implement many of these recommendations. Other recommendations will require higher‐level system changes before down‐stream application and benefits can be realised.
Author Contributions
Rebecca Trevethick: conceptualisation, investigation, methodology, resources, writing – original draft, writing – review and editing. Simon Baron‐Cohen: investigation, resources, supervision, writing – original draft, writing – review and editing. Elizabeth Weir: investigation, resources, writing – original draft, writing – review and editing. Carrie Allison: investigation, resources, writing – original draft, writing – review and editing. Matthew C. Fysh: investigation, resources, writing – original draft, writing – review and editing. David P. Laplante: investigation, resources, writing – original draft, writing – review and editing. Malini Dey: investigation, resources, writing – original draft, writing – review and editing. Jessica E. Opie: conceptualisation, investigation, methodology, project administration, resources, supervision, writing – original draft, writing – review and editing.
Funding
SBC received funding from the Wellcome Trust 214322\Z\18\Z. For the purpose of Open Access, the author has applied a CC BY public copyright licence to any Author Accepted Manuscript version arising from this submission. SBC also received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777394 for the project AIMS‐2‐TRIALS. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA and AUTISM SPEAKS, Autistica, SFARI. SBC also received funding from Autism Action, SFARI, the Templeton World Charitable Fund and the MRC. The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results. Any views expressed are those of the author(s) and not necessarily those of the funders (including IHI‐JU2). All research at the Department of Psychiatry in the University of Cambridge is supported by the NIHR Cambridge Biomedical Research Centre (NIHR203312) and the NIHR Applied Research Collaboration East of England. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Ethics Statement
The authors have nothing to report.
Conflicts of Interest
The authors declare no conflicts of interest.
Contributor Information
Simon Baron‐Cohen, Email: sb205@medschl.cam.ac.uk.
Jessica E. Opie, Email: jo515@cam.ac.uk.
Data Availability Statement
Data sharing is not applicable to this article as no datasets were generated or analysed.
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Data Availability Statement
Data sharing is not applicable to this article as no datasets were generated or analysed.
