Support before diagnosis could help neurodivergent children through assessment waits

Co-produced, strengths-based booklets helped children and families discuss neurodivergent traits and coping strategies while they waited for formal assessment.

A growing number of families are being told to wait months, and sometimes years, for autism or ADHD assessments, yet their children’s needs do not pause while the paperwork moves slowly. The study by Evie Shore and Lauren Powell, published in the Journal of Research in Special Educational Needs, examines a simple but important question: what can help children who have neurodivergent traits, but no formal diagnosis, understand themselves and cope day to day? The answer, the authors suggest, may lie in co-produced, neurodiversity-affirming resources that begin support before a diagnostic label arrives. That is especially relevant at a time when NHS England has warned of long delays and when charities such as Autistica have said the assessment system leaves many families without timely help.

Shore and Powell worked with 24 families and seven professionals to test two interactive booklets adapted from existing autism and ADHD materials. The children, aged seven to eleven, were all in mainstream schools and had either suspected traits or were on diagnostic waitlists. Rather than using clinical or deficit-led language, the materials were written in strengths-based terms and built around activities, prompts and visual elements that children could explore with adults. According to the study, families used the resources for at least two weeks before giving feedback, while teachers, educational psychologists, clinicians and advocacy representatives reviewed the booklets separately.

The response was broadly positive. Children and adults said the design made the resources feel welcoming and manageable, and they valued the chance for children to see their own experiences reflected in plain, non-stigmatising language. The study found that participants appreciated the move away from pathologising labels and towards wording that encouraged self-understanding. Professionals also felt the materials could work well in schools because they gave children and adults a shared vocabulary for discussing needs, strengths and coping strategies. The researchers argue that this kind of personalised, child-led approach may be particularly useful while families are still waiting for assessment.

The findings also fit a wider pattern in practice guidance. Bristol City Council’s autism support advice says children do not need a diagnosis to receive support, and schools should respond to need rather than wait for a formal label. The council also highlights the Neurodivergent Needs Analysis, a collaborative way of identifying a child’s strengths and areas of difficulty. Likewise, the LEANS curriculum used in primary schools introduces children to neurodiversity through hands-on activities and storytelling, showing how early, informal education can help normalise difference and build understanding.

That said, the study has limits. The sample was relatively small, largely White British and drawn from a few areas in England, so the findings may not transfer easily to families with different backgrounds or to children in specialist settings. The booklets were also tested over a short period, so it remains unclear whether the benefits would last or translate into measurable gains in wellbeing, confidence or school participation. Even so, the broader direction is clear. As more practical libraries and toolkits emerge, from evidence-based workbook collections to other neurodiversity-affirming guides, the case is strengthening for support that starts with a child’s lived experience rather than a diagnosis. For parents and schools alike, the message is straightforward: help should begin when difficulties are noticed, not when a report finally arrives.