Create an emergency fund for ASD (autism) & ADHD assessments

The Government should create an emergency fund to deal with the massive waiting lists for autism & ADHD assessments for children AND adults. This would provide resources for local health services deal with current waiting lists and new patients.

The waiting lists for these assessments are massively long up & down the country. In some areas children and adults have to wait years for an assessment. This can cause great distress to those on waiting lists and their families. It's time neurodevelopment is taken seriously. The effects of late diagnosis are well documented. Children diagnosed earlier perform better in school, they are less likely to develop mental health issues later in life. Adults left to wait for such long periods are more likely to develop mental health issues. These are just a few benefits of early diagnosis.

The National Institute for Health and Care Excellence (NICE) guideline ‘Autism spectrum disorder in adults: diagnosis and management’ states people should be waiting no longer than 13 weeks between a referral for an autism assessment and a first appointment. The NICE guideline does not recommend a maximum waiting time for the whole diagnostic pathway, recognising that making a diagnosis can be complex and involve a range of different professionals and agencies.

With respect to assessments for Attention Deficit Hyperactivity Disorder (ADHD), the NICE guideline ‘Attention Deficit Hyperactivity Disorder: Diagnosis and Management’ does not recommend a maximum waiting time between first referral and a first assessment for ADHD. However, Clinical Commissioning Groups and National Health Service trusts should have due regard to this NICE guideline, which aims to improve the diagnosis of ADHD, the quality of care and support that people receive. We want every area to meet NICE guidance for autism assessments, but we recognise this is not happening everywhere. Anecdotal evidence suggests this is largely driven by increased demand for diagnosis services due to growing awareness and recognition of autism over the past few years.

To gain a better understanding of waiting times across the country, we started collecting and reporting data on waiting times for autism diagnosis in November 2019. This data is being used by NHS England and Improvement to inform their work to improve waiting times at a local level. We understand that the COVID-19 pandemic may have also made waiting times longer in some areas, because some local systems paused or delayed their diagnosis assessments.