A new report by Autistica illuminates a postcode lottery in autism diagnosis, waiting lists most commonly years long rather than weeks, and autistic people being sent away after diagnosis with a website in lieu of formal support.
Earlier this year, Autistica made requests under the Freedom of Information Act to all 42 NHS Integrated Care Boards in England and 120 providers of NHS autism services. This process revealed that many areas do not hold clear, retrievable information about autism assessment waiting times, or conversion rate to diagnosis; a problem exacerbated by increased commissioning of privately-run companies out of scope of the Act.
Our key findings show that:
- Both children and adults face a postcode lottery, with waiting lists reaching five to five and a half years in some areas.
- The most frequently reported waiting time for an assessment outcome for children is 1-1.5 years. For adults, this rises to 2-2.5 years.
- There is significant variation in conversion rates across the country for both children and adults, ranging from almost 100% down to the high teens.
- Support after diagnosis is often significantly lacking and often relies heavily on signposting and basic information resources.
- Around 1 in 5 children’s assessment providers and 1 in 3 adult assessment providers offer no additional support after a diagnosis compared to the support already available with no diagnosis.
These numbers are in addition to NHS England's figures, which show that 187,567 people – a city bigger than Bolton – were waiting for an autism assessment as of June 2024. 87% of those had been waiting for at least 13 weeks.
These figures are reflective of a broken system. But it doesn’t have to be this way. The new Government must develop a realistic and specific plan to urgently address the crisis in autism assessment and support. This can only be achieved by addressing two fundamental areas of improvement. Firstly, this will require investment in building the necessary workforce. Secondly, we must innovate. Research is crucial to developing new models of identification and support to build autism services fit for the future.
You can read the full report, Not A Priority: The crisis in autism assessment and support, here.