Managing complexity: addressing information gaps in neurodevelopmental differences – a parent survey

Abstract Background Children with neurodevelopmental conditions or differences often have overlapping diagnoses and complexities such as sensory sensitivities. Higher parental health literacy is linked to improved service use and outcomes for children. Methods In May 2024, Growing Different, a UK-based charity, conducted an anonymous online survey shared via social media. It received 395 parent responses and included questions on diagnoses, challenges, strengths, and information needs. Informed consent was obtained, participation was voluntary, and no identifiable data were collected. Quantitative data were analysed for prevalence; thematic analysis was applied to open-ended questions. Results 57% of children had multiple diagnoses. Autism, ADHD, and learning disabilities were the most common. Over 90% experienced emotional regulation difficulties and sensory sensitivities. Frequent health issues included anxiety, sleep problems, dental concerns, and hypermobility. 55% felt their child's strengths, such as creativity and kindness, were not recognised in services or education. 73% felt that online resources highlighting strengths would be very useful. 65% reported barriers to accessing reliable, tailored information; 86% felt that information about additional issues would be helpful. Respondents preferred information formats that included signposting, evidence-based materials, personal stories, clear language, and visual presentation. Parents also highlighted the need for accessible resources for their children such as Easy Read materials, social stories, and visual aids. Conclusions The findings highlight a need for co-produced, accessible, and strength-based resources that reflect the layered nature of neurodevelopmental differences. Integrating health literacy into public health strategies can support families, reduce stress, and improve equity and outcomes. Key messages • Parents of children with complex neurodevelopmental needs face persistent barriers to accessing clear, tailored health information. • Co-produced, strength-based resources improve health literacy and equip families to navigate complex care needs.