Autism charities have today made a joint call for urgent action to end the avoidable and devastating crisis affecting tens of thousands of people waiting for a diagnosis. 

In a letter to Chancellor Rachel Reeves and Health Secretary Wes Streeting, the five leading charities have urged for the Budget next week to include funds to ‘stabilise and strengthen the failing system’.  

There are currently 187,567 people waiting for an autism assessment in England, according to the latest NHS figures. Some people wait years for a vital diagnosis. 

The letter from the Chief Executives of the National Autistic Society, Autism Alliance, Autistica, Ambitious about Autism and the Autism Centre of Excellence at Cambridge points to last week’s report by the Children’s Commissioner Dame Rachel De Souza, which describes how long waits are ‘robbing’ children and young people of their childhood and potential. 

You can read our letter below. 

Dear Chancellor of the Exchequer and Secretary of State for Health and Social Care, 

CC Stephen Kinnock, Health Minister 

We are writing to ask for urgent action on the ‘invisible crisis’ affecting tens of thousands of people who are left unsupported and in limbo while they wait years for an autism diagnosis. In the Labour Manifesto you acknowledged that the treatment of autistic people and people with a learning disability ‘is a disgrace’ and we couldn’t agree more.  That’s why we ask you to act now by making sure this month’s Budget helps NHS England to stabilise and strengthen the failing diagnosis system.

We are asking for:

• Investment in the workforce that delivers autism diagnosis across England
• Investment in innovation that can strengthen the diagnosis system
• Commitment to a long-term plan that ensures capacity and connects people to the right support.

An autism diagnosis can be life changing and, in some cases, life-saving. Over 187,000 people are waiting for an autism diagnosis - more than enough people to fill two Wembley Stadiums. 

As Children’s Commissioner Dame Rachel de Souza highlights, long waits are robbing young people of both their childhood and potential. Children can’t get a diagnosis yet the over-stretched system is insisting a diagnosis is needed to put in place the support and adaptations that they are legally entitled to. Adults are also waiting without support – all are bearing the brunt of a crisis that shouldn’t have been left to get this bad. 

Investment in autism diagnosis isn’t just about opportunity and life chances. Crucially, investment in autism assessment, and evolution of the assessment system, is also an opportunity to improve assessment for other types of neurodivergence, including ADHD, where similar problems exist. Ultimately, an effective diagnostic process drives more cost-efficient services.

The upcoming Government Budget needs to provide sufficient ringfenced funding for autism assessments in 2025/26 and confirm a long-term plan to make sure people can get a diagnosis, if and when they need it, and access to the right support. It is vital for realising the Government’s opportunity mission, for the life chances of the nearly 1 million autistic people in the UK, and for the country’s future economic success. As the country’s leading autism organisations, we are here to work with the Government on this long-term plan. 

Yours,

Caroline Stevens, Chief Executive, the National Autistic Society 

Adam Micklethwaite, Director of the Autism Alliance

Jolanta Lasota, Chief Executive of Ambitious about Autism

Dr James Cusack, Chief Executive, Autistica 

Tom Purser, CEO, Autism Centre of Excellence at Cambridge