KSS Autism: Parameters and Future Care
Research type
Research Study
Full title
Broad Phenotype Children with Autism in Kent, Surrey, and Sussex: Developing a Self-Report Questionnaire Prioritising Individual Self-Care
IRAS ID
325030
Contact name
Sophie McGrevey
Contact email
Sponsor organisation
Sussex Community NHS Fondation Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research Summary -
Referrals for autism assessment have greatly increased in the last few years. This means that waiting times are longer for families, and children and young people are struggling to get the support they need. This also means that the number of autistic children and young people we think there are, is not correct. We need a better understanding of the true number of autistic children and young people so that we can provide better support for them.
This research aims to understand what autism looks like in Kent, Surrey, and Sussex (KSS) to better help autistic children and young people. To do this, we will ask schools about the number of autistic children in their school to better understand the number of children and young people with autism in KSS. Secondly, we will talk with autistic children and young people to find out about the support they need. The information we gather will help us to develop a quality-of-life measure, which can be used by schools to help autistic children and young people get the support they need.
Lay Summary of Results -
Referrals for autism assessment have been increasing in recent years. This means that waiting times are longer for families, and children and young people are struggling to get the support they need. This also means that the number of autistic children and young people we think there are is not correct. We need a better understanding of the true number of autistic children and young people so that we can provide better support for them.
This research aimed to understand what autism looks like in Kent, Surrey, and Sussex (KSS) to better help autistic children and young people. To do this, we asked schools about the number of autistic children in their school and interviewed autistic children and young people to find out about the support they need.
Questionnaire data from SENCos working across 21 primary and secondary schools in KSS revealed an autism prevalence of around 3.5%. Qualitive interviews highlighted that the autistic young people most frequently reported needing small provisions in the classroom, like access to fidget toys, breaks and something as simple as teachers as speaking slowly and clearly, and that these small provisions would really make a big difference in their school experience.
These findings allow us to better understand the prevalence of autistic children and young people in schools and their support needs, which can better inform services, like schools, to provide support for those who cannot access support through traditional means, like an EHCP, or cannot access autism NHS services due to waiting lists.
REC name
London - Hampstead Research Ethics Committee
REC reference
23/PR/0728
Date of REC Opinion
31 Aug 2023
REC opinion
Further Information Favourable Opinion