The current state of autism diagnosis waits

It is currently estimated that around 700,000 people in the UK have a diagnosis of autism(1). Without a formal diagnosis, people can live for years without understanding why they find aspects of life difficult, distressing and harder than their non-autistic peers.

Additionally, some with undiagnosed autism can reach crisis point and some can be mis-diagnosed with a serious mental illness or inappropriately hospitalised in a mental health unit. Being diagnosed as soon as possible means treatment can be implemented sooner to help people manage their condition and make necessary adjustments to their life.

However, recent statistics paint a bleak picture that autism services are in crisis and that thousands are waiting months or even years to access the help that they need.

Last week, the NHS released its latest quarterly autism waiting time statistics. It is recommended that anyone with a suspected autism referral receives their first appointment within 13 weeks, however in July 2022, there were 125,000 people with a referral for ‘suspected autism’ waiting for diagnosis, with 105,000 (84%) of these waiting longer than 13 weeks for their first appointment.

There are also large variations in care across the UK.

Last week’s data highlights the areas with the longest waiting lists; significantly more people waiting longer than 13 weeks in the South East of England compared to other regions.

Additionally, these statistics do not give the full picture of the crisis. The publicly available NHS data does not indicate exactly how long people are waiting until their first appointment, just if they are waiting longer than 13 weeks or not.

This information was recently obtained through freedom of information requests sent to NHS trusts across the country and found that Berkshire Healthcare NHS Trust has 2,801 autistic children’s referrals still awaiting their first appointment after 60 weeks on average (source).

Looking back to April 2019, where the NHS published this data for the first time, there were 18,701 suspected autism referrals. This is a 465% increase in the number of referrals in just over three years, an unprecedented surge that services were wholly unprepared for.

Greater awareness and understanding of autism and autistic traits, particularly in adults, is cited to be one of the reasons behind this extreme rise, and it looks like there is no sign of it slowing. The NHS will struggle to cope with demand and thousands of people will continue to live in limbo waiting for assessment if additional measures aren’t considered immediately.

CHS Healthcare are offering remotely delivered autistic spectrum condition assessments to help NHS partners reduce waiting lists and add essential capacity to struggling services.

Contact Ellie Norman eleanor.norman@xylaservices.com  or Sam Jordan sam.jordan@chshealthcare.co.uk to find out more