Introduction:

Studies looking at autism prevalence in Kent, Surrey and Sussex (KSS) are limited. Notable studies include those in Maidstone in Kent (Tebruegge et al., 2004) and the broader Kent and East Sussex areas (Leekam et al., 2007). Prevalence studies have often focussed on those with a known diagnosis, yet research suggests that a significant number of children in schools with symptoms of autism are not going through the diagnostic process (Wright et al., 2021). This potential discrepancy is important to recognise, as it carries significant implications for resourcing of services in schools and health and wellbeing of children.

Aims:

1. To determine the prevalence of autistic children and young people in schools across KSS.
2. 2. To identify the number of children and young people in schools in KSS, considered to have symptoms suggestive of possible autism, but who have not been referred for diagnostic assessment.

Method:

A pilot tested questionnaire was sent to Special Educational Needs Co-Ordinators (SENCos in schools across KSS. This included questions about the total number of students attending their school, the number diagnosed with autism and the number of those suspected of being autistic. This report is based on responses from 13 schools, including 8 Primary and 5 Secondary schools.

Results:

This study included 9,492 students from 13 schools in KSS. The prevalence of doctor diagnosed autism was 3.2% (n=304). There were an additional 266 students (2.9%, 266/9188) who the SENCos suspected of being autistic, but these students had not received a formal diagnosis. This suggests an overall prevalence is about 6% (570/9492) in KSS.

Conclusions:

This discrepancy in diagnosed and undiagnosed autism in KSS suggests that for every one autism diagnosis, one remains either undiagnosed or awaiting diagnosis. Diagnostic and support services are already overwhelmed by a 400% increase in autism and ADHD referrals since 2019 (Nuffield Trust 2024), presenting significant implications for future planning and resourcing of service provision. Future research should confirm these findings, and explore the potential reasons, like whether insufficient access to educational psychology leads to children with other causes of social communication difficulties, such as learning disability, being misidentified as autistic, or if long waiting times for assessment deter referrals.