Record 190,000 patients waiting for autism diagnosis by 2024 with ‘devastating’ consequences

Exclusive: NHS autism service ‘crisis’ will leave tens of thousands of patients without diagnosis

Whether it’s the media justifying prejudice, parents dismissing our experiences or entitled autistic men using their diagnosis to defend discriminatory acts, dangerous stereotypes we’ve fought so hard against are being reinforced

A record 190,000 patients are expected to be waiting for an autism diagnosis by 2024, new analysis shows, as the NHS backlog soars.

Some 130,000 people are currently on the list to be seen – with 67,600 waiting for more than a year, according to the report by charities The Donaldson Trust and The Brain Charity and community health provider, CHS Healthcare.

But they warn that figure is set to grow to 190,000 by next year, based on the growth of demand since 2019, due to the “continually widening gap” between the number of people waiting to be seen and staff shortages seen across healthcare services.

According to the report, shared with The Independent, 800,000 people are also set to be waiting for an attention deficit hyperactivity disorder (ADHD) diagnosis.

The authors warned the NHS is failing to keep up with demand, which has seen a 42 per cent increase in the number of people prescribed ADHD medication and a 269 per cent increase in referrals for an autism diagnosis between 2019 and 2023. At the same time, staff levels increased by just 19 per cent.

The report, called The Damaging Waits for Assessment, warns the crisis in services is having a “devastating” impact on patients. According to CHS Healthcare, around 700,000 people in the UK have an autism diagnosis.

Laura Watkins, chief executive officer at The Donaldson Trust, which supports people with neurodiversity said: “Unfortunately, long waiting lists can significantly impact on both the individual and their family’s ability to function normally, and the incident of mental health and relationship issues developing is high. For the individual, these issues can manifest themselves in several ways, for example, poor sleeping patterns, interrupted learning, disordered eating, social isolation, depression, and suicidal ideation ... To avoid these devastating life impacts, we must do more to improve both waiting times for diagnosis, as well as post-diagnostic support.”

The NHS target for patients to be seen following an autism referral is 13 weeks. However, NHS data shows that 109,480, or 84 per cent, of the people on the list in December were waiting longer than this. That’s an increase of 485 per cent since April 2019 when the data was first collected.

The report comes as the number of new referrals for autism diagnosis has soared, with 130,000 new referrals in December. According to the report, it will take the NHS two years to process these new referrals and that does not take into account any further referrals.

Laura Hudson, left, forced to pay privately for autism diagnosis (CHS Healtcare)

One patient, Laura Hudson, was forced to pay privately for an autism diagnosis due to long waits and has been on a waiting list for an ADHD assessment for almost two years. Her children have been waiting for an autism assessment for three years.

She said: “This wait has been incredibly hard with both of my children struggling emotionally and even experiencing suicidal thoughts on a daily basis. Whilst my children’s school is doing its best to understand the situation, they are left without the support that they need.”

Nanette Mellor, chief executive officer at The Brain Charity, said: “Demand for autism and ADHD diagnostic services, however, are ever increasing and there’s no doubt that we will see a much heavier burden on society in the long run if things do not change. There is both a humanitarian and an economic argument for investing in diagnostic services for autism and ADHD.”

Eleanor Norman, client partner at CHS Healthcare and former NHS mental health nurse, said: “As our report shows, hardworking NHS services and professionals are unable to meet spiralling demand. We need a collaborative approach that sees the NHS, third sector and private companies working together to create assessment pathways that tackle the backlog and speed up access to these vital services. Without this, the damaging impact on the lives of those who are left in limbo will be enormous.”

An NHS spokesperson said: “The NHS is committed to its long term plan pledges of providing timely autism assessments and we have published a new autism assessment framework which is aimed at supporting Integrated Care Boards, providers and clinicians to deliver improved outcomes in all-age autism diagnostic pathways.

“Within this framework, ICBs have been provided best practice guidance on how to improve the quality of autism assessment by using existing resources as effectively as possible and recognising that improvements across the entire assessment pathway is needed so that our national ambitions to bring down waiting times can be met.”