First UK perinatal research to ask neurodivergent people what matters
A team led by King’s College London has published the first UK community-based participatory priority-setting exercise within perinatal mental health to include a neurodiverse sample. The study, posted as a preprint in March 2026, surveyed 709 participants — deliberately oversampled for neurodivergence, with 12–23% identifying as autistic and 15–27% identifying as ADHD.
That oversampling was intentional. Previous research has reported on perinatal priorities in the general population, and separately on research priorities of neurodivergent people, but never the intersection. Until now, nobody had asked neurodivergent people what matters to them in perinatal care.
The study used a co-designed mixed-methods survey developed through regular focus groups with lived experience experts, who were paid for their time following NIHR guidelines. Participants rated and ranked fifteen research topics focused on perinatal mental health, then provided qualitative responses about additional priorities the list had missed.
The sample was heavily female (96.9%), white (90.8%), university-educated (82.2%), and in relationships (95.8%). These demographic limitations matter — the findings reflect a specific slice of the neurodivergent perinatal population, not its full diversity. But as a first attempt to include neurodivergent voices in perinatal priority-setting at all, the study establishes a baseline that did not previously exist.
Neurodivergent people are at increased risk of perinatal mental health difficulties. The research infrastructure has known this for years. What it had not done was ask neurodivergent people what they actually need.
Perinatal priorities across (neurodivergent and neurotypical) neurotypes
The quantitative findings were striking in their consistency. Across the whole sample and the neurodivergent subsample, the top three research priorities were identical:
1. Interventions and support for birthing people experiencing perinatal mental health problems
2. Diagnosis of perinatal mental health conditions
3. Impact of perinatal mental health on parent-infant relationships
The bottom priorities were also consistent: health outcomes for partners and social/economic outcomes of poor perinatal mental health ranked lowest across neurotypes.
This matters because it challenges the assumption that neurodivergent people have fundamentally different perinatal needs. They do not. The priorities are universal — effective interventions, accurate diagnosis, protected parent-infant relationships. What differs is not what neurodivergent parents need but whether the system recognises them as having needs at all.
The minor differences between whole-sample and neurodivergent-subsample rankings were negligible. When asked to identify what perinatal research should focus on, neurodivergent participants gave the same answers as everyone else. The divergence appeared only when they were given space to elaborate.
Qualitative data broke containment beyond mental health
The study asked about mental health priorities. Participants answered about the entire perinatal system.
Of 709 participants, 253 provided qualitative responses to an open-ended question about additional research topics. Despite being asked to list topics not already covered, many expanded on existing categories — adding specific research questions, suggesting sub-topics, or explaining why particular priorities mattered to them personally. The additional themes that emerged went far beyond mental health: healthcare experiences, perinatal trauma, birth experiences, and socio-economic circumstances.
Neurodivergent participants specifically highlighted the absence of research into their experiences. One noted that healthcare processes “tailored to neurotypical people” left them “feeling anxious because I felt there was a lot of stuff I was expected to know / do without being told.” Others raised questions the research community has not addressed — whether autistic meltdown during pregnancy affects the baby, whether hyperemesis gravidarum links to neurodivergence. Et cetera.
The most damning finding was what neurodivergent parents encountered when they searched for information themselves. As one participant reported: “Anything I tried to find out about only led me to things about ‘how to prevent autism during pregnancy’.”
They were not looking for prevention research. They were looking for support. The research infrastructure had nothing to offer them except guidance on how to best avoid producing children like themselves.
Neurodivergent perinatal as a missing research category
Perinatal research exists. Neurodivergent research exists. The intersection of neurodivergent pregnancy, birth, and postnatal research barely does. And that’s where I’m speaking from in this article.
This study is the first UK participatory priority-setting exercise to include neurodivergent people in perinatal mental health research. That it took until 2026 is itself the finding. The infrastructure for studying perinatal experience has been built without neurodivergent input, and the infrastructure for studying neurodivergent experience has largely ignored perinatal contexts.
What research does exist at the intersection tends to treat neurodivergent parents not as people with perinatal needs but as risk factors for producing neurodivergent children. The framing is preventive rather than supportive. Autistic mothers appear in the literature primarily as vectors for autism transmission, not as people or patients requiring, at the very least, the same level of care.
The qualitative data in this study suggests what a neurodivergent-inclusive perinatal research agenda might look like: healthcare experiences designed for different cognitive styles, information delivery that does not assume neurotypical processing, sensory environments in maternity settings, physical health questions that have never been asked. Participants identified these gaps unprompted, in response to a survey about mental health priorities.
The study authors call for further research “including more demographically diverse samples and a neurodiversity-affirmative framework.” That framework does not currently exist. This study is a first step toward building it — but the gap between where perinatal research is and where it needs to be remains structural.
Citations
Lautarescu, A., Heraty, S., Johnson, C., Ruigrok, A., Eaton, E., Bazelmans, T., Sigurdardottir, J., Ratti, V., Stone, H., Javed, A., Mahtani, S., Lau-Zhu, A., & Smith, D. M. (2026) — Perinatal Mental Health Research: Research priorities from a neurodiverse sample in the United Kingdom
