Background: Many UK NHS autism assessment services have long waiting lists. Tools that help clinicians triage children at risk, to reduce those waiting times, are urgently needed. Our project developed an online autism screening tool, for use with children 4-11 years of age. The Autism Picture Questionnaire (APQ) was designed for online application by clinicians, for use with families from ethnic minorities, where English is not the first language, or low literacy. The task presents parents with photographs of children from diverse ethnic backgrounds, some have autism, others not, and illustrate key autism traits (e.g., lack of eye contact, stimming).  

Methods: Obtaining informed consent to photograph children <16years was complex. We conducted co-production PPI focus groups with children from the Great Ormond Street Hospital Young Person Advisory Group (GOSH-YPAG).

Results: GOSH YPAG involvement proved valuable, informing both the design procedure and the acceptability of the APQ: (1) Benefits: The project was regarded as important, and the use of pictures facilitated accessibility and engagement. (2) Stigma: YPAG recommended the APQ contained a statement that it illustrates both autistic and non-autistic children. (3) Informed consent: the children illustrated were too young to consent. There were mixed views on whether they should be recontacted for consent when age 16. (4) Autism: YPAG recommended we devise a simple account of autism that could be given to affected children; we wrote the ‘Autism Explainer Document’ in collaboration with autistic children and their parents from the Autistica Charity Research Insight Group.

Conclusion: Co-production with children and young people facilitates the production of ethical research study materials and procedures. Our experience with children’s focus groups led to the development of a unique psycho-educational leaflet and to an understanding of appropriate consent procedures for a novel autism assessment tool.

Keywords: Autism, co-production, young people, PPI, participation