Broad Phenotype Children With Autism in Kent, Surrey, and Sussex: Developing a Self-Report Questionnaire Prioritising Individual Self-Care

Referrals for autism assessment in the UK have significantly increased in recent years, with mean referral rates doubling between 2015 and 2019. With it taking a year or more to reach a diagnostic conclusion, leaving autistic children and young people unidentified and without access to support they desperately need.

Delays in assessment and diagnosis can be exacerbated in areas of hidden deprivation, including marginalised coastal and cities, as well as rural communities. Delayed diagnosis and complex co-occurring mental health conditions lead to poor lifelong outcomes. With early recognition and diagnosis, early intervention can create more impactful changes in the lives of autistic children.

One area with hidden deprivation is Kent, Surrey and Sussex (KSS), though this area has not been investigated for its prevalence rates. Lack of prevalence investigations across KSS mean few interventions understand local autism changes, and listening to children will tell us about their own lived experience. Current evidence either investigates aspects of autism prevalence using older diagnostic criteria, is comparative looking at co-occurring conditions, or simply reports numbers referred. What is not known are current rates across primary schools, as many studies focus on secondary school transition or experiences.

Initial work by Tebruegge carried out a retrospective investigation only in the Maidstone area of Kent by asking all headteachers to report all children with an established diagnosis of autism. Leekam used KSS children as a Language Impairment comparison group. Department of Health in a broader Kent, East Sussex and South-East London Boroughs investigation reported highest quantiles for prevalence for those diagnosed. Prior work by this research team found that one area of West Sussex has seen autism referrals between 2015-2019 increase annually from 61 to 225 (269% increase). Interviews with Special Educational Needs Coordinators (SENCos) conducted by this research team and the Born in Bradford study suggest that a significant number of children in schools with symptoms of autism are not going through the diagnostic process.

The nationwide Clinical Practice Research Datalink (CPRD) primary care database makes a historical understanding of autism problematic, as codes and diagnostic symptoms change over time. Russell shows autism from 1998 to 2018 involves the use of no less than 16 clinical codes. This makes reference to these codes as difficult, hence our change of view from clinical records to current report from schools. However, children with potential autism or social communication issues are referred by General Practitioners, health visitors, Speech and Language Therapists, school nurses, preschool staff, and schoolteachers. It is unusual to accept referrals from parents directly. Within school-based populations there is relative under-diagnosis amongst children from Reception (4 to 5 Years) to Year 6 (10 to 11 years). Children in the age bracket of 6-8 have symptoms that become more apparent as peers overtake social communication abilities as social interaction and school-based play and communication leap in complexity. This makes their needs more apparent. The referrals continue to increase in the age bracket of 8-11, as the social communication gap continues to widen, especially in girls. With this increase, a better estimate of autism prevalence in the KSS area is needed.