Should we be accepting self-referrals for Autism assessments?

Abstract

Purpose The Leeds Autism Diagnostic Service (LADS) is an all IQ service accepting professional and self-referrals, from age 18, for diagnostic assessment. LADS is unusual compared to other diagnostic services in England, in that it accepts self-referrals. The purpose of this paper is to compare diagnostic outcome between self-referrals and other referral sources. Design/methodology/approach This is a service evaluation of all 692 referrals for diagnostic assessment into LADS, over a three year period, from 2016 to 2018. The diagnostic outcomes were compared between self-referrals and other referral sources. Secondary analysis looked at age and gender differences between these groups. Findings There were 98 self-referrals over three years with autism diagnosed in 65 per cent. In total, 594 other referrals were received during this time period, with autism diagnosed in 44 per cent. This showed a significant difference of 21 per cent with 95% confidence intervals of 10–31 per cent (p=0.0001) using a n−1 χ2 test. In total, 59 per cent of self-referrals were from patients identifying as female, which compared to 35 per cent identifying as female from other referrals. This was a difference of 24 per cent with 95% confidence interval of 14–34 per cent (p<0.0001) on the n−1 χ2 test. Research limitations/implications Factors which may influence the ability to generalise from these results are: that LADS covers a large mainly urban and suburban area with a range of ethnic and socioeconomic diversity; that LADS is an all IQ service unlike some other autism diagnostic services; historical and service-related factors unique to Leeds may be dissimilar to other locations. It was beyond the scope of this evaluation to perform a qualitative analysis to compare the referral sources, but this may be an area for further study. Practical implications This evaluation supports the use of a self-referral route for adult autism diagnostic services on a local level and may support its use more widely in other services. Social implications This evaluation, in demonstrating proportionately significantly higher autism diagnosis from self-referrals is likely to be reducing the work load of professionals who would normally make referrals. Alternatively, it may be capturing a subgroup of the autism population who would not otherwise have sought diagnosis. In either scenario, it supports and is consistent with a patient centred approach to accessing appropriate diagnostic services. Originality/value The authors are not aware that any previous evaluation of this nature has been conducted and feel this evaluation supports the use of a self-referral pathway in adult autism diagnostic services.