A new qualitative study from the United Kingdom finds that parents of autistic children and the healthcare professionals who treat them largely agree on what makes care hard to reach, but they describe the same obstacles from strikingly different vantage points. The research, published in the Journal of Autism and Developmental Disorders, interviewed twelve parents or carers of autistic children and eight healthcare professionals, including general practitioners, nurses, and speech and language therapists, in online semi-structured interviews. Using a phenomenologically informed reflexive thematic analysis managed in NVivo 14, the researchers identified four themes that cut across both groups: knowledge and training, reasonable adjustments, communication, and system-level barriers.
The central pattern in the findings is one of convergence with a difference in emphasis. Both parents and professionals recognised that autism-specific knowledge among practitioners is inconsistent, that communication is often inflexible, that services are under pressure, and that care is fragmented. But parents tended to describe the consequences of these failures, such as mistrust, misattributed symptoms, and distressing encounters, whereas professionals focused on the structural conditions behind them, including variable training, workload, and the need to improvise within existing service constraints. The study’s authors describe this as the first qualitative UK work to compare these two perspectives on autistic children’s healthcare access across National Health Service settings with an explicit focus on where the groups converge and diverge.
On knowledge and training, parents reported experiences that eroded their confidence in clinical judgement. One father recounted how his son’s shaking was initially attributed to anxiety and treated with medication, only for the tremors to worsen and turn out to be epileptic seizures that the medication aggravated. Other parents described practitioners who attributed a wide range of symptoms to autism alone, dismissing requests for examinations with statements such as that autistic children usually do not sleep. In one account, a child’s aggressive behaviour was traced to an ear infection only after it had been assumed to be part of the child’s autism. The researchers connect this pattern to diagnostic overshadowing, in which symptoms are attributed to a person’s primary diagnosis while co-occurring conditions are overlooked or misdiagnosed.
Some parental accounts were more severe. Two parents described healthcare staff who did not know how to work with autistic children resorting to forceful interventions, including a child being pinned down by five staff members for a throat examination and another child experiencing a forced attempt to treat an eye injury. Both parents reported that their children subsequently developed a medical phobia. Parents also flagged problems at the front desk: receptionists and other non-medical staff, often the first point of contact, sometimes redirected families to emergency advice lines or urgent services when told that an autistic child could not wait in a crowded area, adding steps and delaying care rather than facilitating it.
The healthcare professionals interviewed offered a complementary picture of the same problem. They described foundational university training that touched on accessibility and sensory sensitivities but lacked depth, with much of their practical understanding of autism acquired through clinical experience, personal connections to autistic people, or self-directed learning rather than formal instruction. Additional workplace training was often optional and not consistently embedded across settings. One professional summarised the gap bluntly, saying that their setting had nothing specific in place to support access to healthcare and that staff were left to organise themselves, which made it hard to ensure every child received the same level of access. Some professionals relied on trusted colleagues, local experts, or even informal internet searches to stay current.
Reasonable adjustments emerged as a second area where both sides saw the same need but different realities. Parents described healthcare environments that were not designed for sensory sensitivities to loud noise and bright light, promised adjustments that never materialised, and providers unwilling to adapt. Yet they also reported positive experiences, including a consultant who communicated through the parent because the child’s social anxiety limited direct interaction, and a practitioner who wore casual clothing and conducted an examination in the family’s car to accommodate a child with medical phobia. Professionals, for their part, described making ad hoc adaptations within tight constraints: phoning parents before scheduling appointments to avoid unnecessary visits, shortening vital-sign measurements to prevent distress, using quieter less clinical spaces, and even giving walking boots instead of a plaster cast to a child with a broken ankle to avoid sensory distress.
Communication was a third theme in which both groups recognised the value of clear, flexible, individualised approaches. Parents described receiving generic or outdated post-diagnosis information, being left to navigate services on their own after a diagnosis letter listing two or three services, and feeling that their views about their children were dismissed, in one case by an eating disorder team that declined to listen because the child had not verbally stated the problem himself. Many turned to Facebook groups for practical, experience-based advice from other parents. Professionals, by contrast, described how they had adapted their communication over years of practice, using child-led strategies such as letting a child name a life-size paper model of the human body to build rapport, and all eight reported changing their communication style based on children’s preferences and behaviour.
System-level barriers produced the widest range of subthemes and perhaps the sharpest divergence in framing. Parents described long waits between assessments and follow-ups, standard ten-minute GP appointments that were inadequate for children who cannot speak or who need extra time, and services operating in silos that addressed physical, behavioural, and social communication problems separately. Some parents suspected that financial constraints led professionals to defer treatment until a crisis point, and one parent described having to self-refer to an occupational therapist after discovering through other parents that such services could help with toileting. Professionals confirmed the underlying pressures from their side: high caseloads, ward demands, and triage priorities that force them to prioritise life-threatening conditions over the extra time autistic children need. One clinician stated plainly that life or death wins over communication support, and another noted that patients with additional needs do not always have those needs met when the department is at capacity.
The study’s authors situate these findings within a broader evidence base showing that barriers to healthcare for autistic children arise across interpersonal, organisational, and systemic levels, and they note that some elements, such as fragmented referral pathways and variation between NHS Trusts, are shaped specifically by the organisation of UK services, while others, including the need for autism-specific knowledge, flexible communication, and sensory adjustments, echo qualitative research in other healthcare systems. They also point to policy context: England’s Oliver McGowan Mandatory Training on Learning Disability and Autism aims to improve staff knowledge, but the authors argue it may be too general for some roles, lacks role-specific guidance for non-speaking or minimally speaking children, and does not address the systemic solutions their findings highlight. The researchers propose concrete changes, including embedding autism-specific training in commissioning contracts for all roles, requiring flexible appointment times and low-sensory waiting options in service specifications, commissioning integrated pathways with a single point of access and a named care coordinator, investing in interoperable records that carry reasonable-adjustment flags, and resourcing co-designed post-diagnosis navigation so families are not reliant on informal networks.
The authors are careful about the study’s limits. The parent sample was composed almost entirely of mothers, with little input from fathers or other carers; the professional sample was small and unevenly distributed, with limited GP representation and no dentists; no data on ethnicity, socioeconomic status, or rurality were collected; interviews were conducted in English without interpreter support; and autistic children themselves were not interviewed, meaning their experiences were represented indirectly through adult accounts. Recall bias and the first author’s lived experience as a parent of an autistic child, which may have encouraged openness but could also have shaped reporting, are acknowledged. The analysis was also based on patterned meaning rather than the frequency of particular views. Within those constraints, the study offers a comparative account of how the same barriers are experienced from both sides of the healthcare encounter, as delay, gatekeeping, and uncertainty for families, and as workload, triage pressure, and constrained flexibility for the professionals trying to serve them.
Subject of Research: Barriers to healthcare access for autistic children in the UK as perceived by parents and healthcare professionals
Article Title: Understanding Healthcare Access for Autistic Children in the UK: Perspectives From Parents and Healthcare Professionals
Article References: Babalola, T. T., Moss, R., Dipper, L., & Botting, N. (2026). Understanding Healthcare Access for Autistic Children in the UK: Perspectives From Parents and Healthcare Professionals. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-026-07533-8
Image Credits: AI Generated
DOI: 10.1007/s10803-026-07533-8
Keywords: autism, healthcare access, NHS, qualitative research, parents, healthcare professionals, reasonable adjustments, diagnostic overshadowing, communication barriers, system-level barriers, United Kingdom, pediatric care
News Source: Ophelia Keating. (October 23, 2026). Parents and Clinicians Agree on Barriers to Autism Healthcare but See Them Differently. Scienmag.
