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.
With both referrals and needs of autistic children increasing, other areas of their lives are
impacted. Evidence does suggest that having autism can negatively impact autistic children's
outcomes in later life, for example, living independently, job employment and retention,
having social relationships, experiencing poor mental health and quality-of-life. Despite
this, there is limited evidence of a measure of quality of life for autistic children to help
with their unmet needs and overall quality-of-life in school.
Mulraney and Coghill reported on the commonly used quality-of-life measures used in children
(with ADHD). This includes the Pediatric Quality of Life Inventory (PedsQL) and the Child
Health and Illness Profile (CHIP-CE). These measures look at the general functioning of
children, such as social, emotional, and physical functioning. Though these questionnaires
have been used to look at the quality-of-life in children with ADHD, they do not look at
autism, and there is no quality-of-life measure specifically for autistic children. Most
studies of quality-of-life of high-functioning autistic children have utilized the PedsQL.
For adults, there is a measure of quality-of-life known as the Autism Quality of Life
Measure. The ASQoL is a 9-item measure, designed with autistic people in mind, by autistic
people, who participated in the development of the measure. However, it was only designed as
an add-on to other QoL measure, the World Health Organisation Quality of Life Measure
(WHOQoL), the WHO-BREF and the WHO Disabilities module. Thus, this measure is used in
conjunction with other QoL measures, suggesting that there is no standalone quality-of-life
measure for autistic people. Also, this measure is used in autistic adults, again suggesting
that there is no one single quality-of-life for autistic children.
Given the evidence around outcomes for autistic adults, it seems paramount to intervene
early, and give autistic children the ability to have their own say in their needs to improve
their quality-of-life. It would be beneficial to have a quality-of-life measure specifically
for autistic children to improve their future outcomes. Children's views and suggestions on
their own care are therefore vital, yet are rarely gathered, which the research team aim to
address by modifying the ASQoL, a validated questionnaire which identifies priorities for
Quality of Life and Wellbeing for autistic adults, for autistic children to address their
needs in school and help them to advocate for their own support.