New research highlights crisis in autism assessment and support

More than 187,500 people are currently waiting for an autism assessment in England, with waiting lists reaching five-and-a-half years in some areas.

The findings are published in a new report by Autistica, NOT A PRIORITY: The crisis in autism assessment and support. The report found significant discrepancies and inconsistencies in diagnostic rates up and down the country with a lack of support following a diagnosis, often relying on signposting and basic information sources.

Indeed, around one in five children’s assessment providers and one in three adult’s assessment providers offer no additional support after a diagnosis compared to the support already available with no diagnosis.

Autistica says the findings represent a “broken system” and they are now urging the government to develop a realistic and specific plan to urgently address the crisis in autism assessment and support.

An “unacceptable postcode lottery” for those accessing autism assessments and diagnosis

Between March and June 2024, Autistica made Freedom of Information requests to all 42 NHS Integrated Care Boards in England regarding autism assessment and support. An additional 120 requests were then sent to NHS Trusts, Foundation Trusts and other providers as signposted by the various Integrated Care Boards.

The researchers found that many areas do not hold clear, retrievable information about autism assessment waiting times or conversion rates to diagnosis (i.e. the percentage of autism assessments that resulted in a confirmed autism diagnosis). In fact, only one ICB was able to respond to Autistica’s question in full, with the rest only providing partial information or none at all.

However, from the data that was available, the researchers found that:

• Both children and adults face a postcode lottery, with waiting lists reaching 5-5.5 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, with some providers saying they diagnose almost everyone they see for an autism assessment while others report diagnosing less than 20% of their patients.

Autistica says the huge difference in rates across providers is indicative of an unacceptable postcode lottery around access to autism assessment and diagnosis.

The charity has also pointed to the lack of good quality support which is available following a diagnosis, with the most common forms of support being signposting and information/resources.

For children specifically, only a few trusts said they offered training or support for school, occupational therapy or autism parenting courses. Autistica also asked what support is routinely provided to children who undergo an autism assessment but do not receive a diagnosis. Just under a quarter (18 out of 81 responding providers) gave an identical response to both questions; in other words, the support offered after diagnosis is no different to what would be available without a diagnosis.

The situation was remarkably similar for autistic adults, with only a few trusts offering diagnostic reports, mental health assessments or signposting to social/activity groups. Similarly again, one third said of adult providers were offering the same support to those with and without and autism diagnosis.

Government urged to develop a plan to address the crisis in autism assessment and support

Dr James Cusack Chief Executive at Autistica says a realistic plan is now needed to urgently address the crisis in autism assessment and support.

“As an autistic person, it is devastating to see that the waits families go through today are even worse than they were 27 years ago when I received my diagnosis.

“We hope that by sharing the findings of Autistica’s Freedom of Information requests to all 42 NHS Integrated Care Boards in England and over 120 NHS-commissioned assessment providers, it is evident to see just how crucial it is to address this impending health crisis, starting right this very moment.

“This crisis is not too big to solve, but it requires action, and a long-term plan, innovation and an investment in workforce to ensure autistic people receive timely assessment and support,” he said.

Lauren Nicolle

Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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