The importance of a timely diagnosis
A timely autism or ADHD diagnosis is vital to getting the right help and support and without a diagnosis many people face challenges including struggles at school, home and in the workplace. Health and education support often relies on a formal diagnosis of autism and without this there can be severe negative consequences.
A recent report by The Centre for Young lives warned that failure to provide children with effective autism support can lead to poor long-term outcomes, such as an increased prevalence of mental ill health issues, and a greater risk of school exclusion.
What does NHS data show?
NHS data does not break down waiting times by age, this means it is grouped together for adults and children. However, this data does show that the number of people being referred for an autism diagnosis has more than doubled over the last four years from 5,254 in January 2020, to 10,680 in January 2024.
Graph: Time series of new suspected autism referral in month (Jan 2020 to Jan 2024). Sourced from NHS data.
NICE (National Institute for Health and Care Excellence) guidance states that no-one should wait longer than 13 weeks. However, NHS data from March 2024, shows that only 5.6% (9,034) had had a first appointment within the recommended 13 weeks.
There are currently over 180,000 people waiting for an autism assessment in England. This is a significant increase in the number of people waiting in just one year. Waiting times can vary hugely by area of the country; between October and December 2023 one NHS commissioning board reported the longest median wait for a first appointment of over 2.5 years!
What is the waiting list for an ADHD assessment?
There is no national data published on referrals or waiting times for ADHD assessments, which means that the challenges can go unrecognised. A report in April 2023 presented a summary of NHS responses to Freedom of Information requests about ADHD waiting times, which showed large variation between areas with some people waiting months and others waiting years for a first appointment.
What is the future projection for autism assessment waiting times?
The situation is expected to worsen, with projections indicating that the number of people waiting could reach 190,000 by the end of 2024. This backlog is attributed to a dramatic rise in referrals and a shortage of staff who are able to conduct autism assessments.
What is the future outlook?
The delay to an autism or ADHD diagnosis has significant consequences, impacting individuals’ ability to access support and potentially leading to mental health issues. There is an urgent need for increased investment and resources to improve the timeliness of autism and ADHD assessments.
Charities such as the National Autistic Society are lobbying government to improve access to diagnostic assessments, so the hope is that with more investment and a focus on this area the situation may improve but this is not likely to happen in the short to medium term.
Citations:
The Nuffield Trust report – rapidly growing waiting lists
The Centre for Young Lives analysis