Autism and ADHD assessment capacity and waiting times

Like other parts of England, we have seen big increases in the number of children and young people being referred for autism and ADHD assessment in recent years. For autism alone, the number of children being referred for an assessment in our area rose by 350% between 2020 and 2022. Our assessment service was designed to carry out 40 assessments per month, but in the six months to May 2024 it was receiving an average of 252 referrals per month.

This dramatic increase in demand has led to a growing backlog of children and young people waiting for an assessment. Currently:

• Around 5,000 children in our area are waiting for an autism assessment and 2,500 for an ADHD assessment.
• Waiting lists are growing by approximately seven children per day for autism assessment, and two per day for ADHD.
• At our current capacity it would take approximately 10 years to clear the current backlog for autism assessment (and two years for ADHD), even if no more children were added to the waiting lists.

It has also led to longer waiting times. For community paediatrics  (including ADHD assessment):

• Children with the most urgent needs are waiting 18 weeks for an assessment, on average.
• Those with less urgent needs are waiting 55 weeks on average, while children with important, but not urgent, needs are waiting 90 weeks.
• Waiting times could increase due to the volume of new referrals and the prioritisation of children being added to the waiting list.

For autism assessment:

• Children with the most urgent needs are waiting, on average, two years for an assessment.
• Those with less urgent needs can wait up to four years and this waiting time is expected to increase due to the volume of new referrals and prioritisation.

We have already temporarily doubled our autism assessment capacity to meet demand. However, fully clearing the existing backlog would cost an estimated £24 million and the service would then require a six-fold increase in capacity to keep up with demand. Even if funding were available to deliver this, it is highly unlikely that we would be able to recruit enough qualified clinicians to staff an expanded service.

We urgently need to address this problem and understand how we can better meet families’ needs within the resources available to us. This is the purpose of the Neurodiversity Transformation Programme, which is exploring innovative new ideas and approaches for a sustainable, long-term model of care.

While we do this it is important that children and young people who are experiencing lengthy waits for assessment are supported to ‘wait well’. With local parent carers, we are exploring how we can improve support for children and families on the waiting list. We are also encouraging parents to access the support, advice and guidance available to them in schools and other settings.