Background Autism Spectrum disorder (ASD) is the most prevalent developmental disorder worldwide, affecting all ethnic backgrounds. The estimated global prevalence of autism is 1%. Existing studies examining prevalence rates suggest lower diagnostic rate in developing countries. Lack of awareness, cultural factors, and access to appropriate professionals, play a role in this. The World Health Organisation (WHO) ‘Thimphu Declaration’ 2017 emphasizes the need for a whole-of-society and government approach to strengthen national capacities to provide effective support to people with ASD.
In the UK, the National Institute of Clinical Excellence (NICE) has recommended an evidenced based standard of assessment for the diagnosis of ASD. It requires multiple professional involvement; Paediatrician or psychiatrist, Speech and Language Therapist (SALT), Educational or Clinical Psychologist (EP). The NHS Long Term Plan 2019, however, acknowledges the deficiencies in this specialist service provision in the UK. Literature clearly highlights the benefits of early diagnosis and recognition of co-morbidity with ASD.
The RCPCH, State of Child Health report 2020 identifies variations in defining disabilities and learning difficulties and lack of clinical data recording for these groups. This adds to inequalities in health and educational provision.
Gloucestershire has no formal multi-disciplinary diagnostic pathway for the assessment of ASD in primary school aged children. No clinical data is collected routinely on outcomes for these children or their support needs.
Objectives To audit the process of autism assessment for primary school aged children against NICE guidelines.
To provide data to inform service development and commissioners in developing a NICE compliant autism assessment pathway and post-diagnostic support services
Methods Referrals to a specialist Paediatric neuro-disability clinic over a two month period in 2018 were retrospectively audited. These were manually categorised by reason for referral. For those referred for ASD assessment, clinic letters for up to one year after referral were reviewed. Data retrieved: number with final diagnosis of autism, time taken for diagnosis, frequency and type of co-morbidities and level of multi-disciplinary involvement.
Results 46/199 referrals requested an autism assessment. 25 rejected due to lack of sufficient information. 21 accepted for an assessment for ASD. 6/21 given a final diagnosis of ASD. 7/21 seen by all three of SALT, EP and Pediatrician, in line with NICE guidelines. 3/21 saw EP and no SALT and 3/21 saw SALT and no EP. The average time taken from first appointment to diagnosis was 8.6 months.
Co-morbidities identified in 5/6 children diagnosed with ASD. This included ADHD, tics, developmental co-ordination disorder and learning difficulties. 16/21 not diagnosed with ASD were given alternative formulations; social, emotional and mental health needs being most common.
Conclusions Most primary children in Gloucestershire are not following an assessment process for autism which meets NICE and WHO standards, despite the UK being a developed country with nationalised health care. There was a high frequency of co-morbidity with ASD, within our small sample. Routine clinical data collection for children with additional needs is lacking. These systems need addressing locally and nationally to ensure children have equitable assessments and the right health and educational support
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