The number of people waiting for an autism assessment has increased by 40% in the last year and 169% since February 2020.
In December 2022, there were 140,000 people on the waiting list for an autism assessment, with 86% (121,000 people) waiting longer than 13 weeks.
NICE guidance is clear – no one should waiting longer than three months between being referred for an autism assessment and being seen, yet some have been waiting for more than a year.
The National Autistic Society (NAS) says this is “unacceptable” and is now urging the government to address the growing autism diagnosis crisis and to immediately invest in rolling out diagnosis services.
A timely autism diagnosis can be helpful for many reasons. While some believe a formal diagnosis is an unhelpful label, others feel relieved when they are diagnosed, as it helps them to better understand the reasons behind why they think and behave in certain ways.
A diagnosis can also help people access support, such as reasonable adjustments at school or work, which can make it easier to understand and work through day-to-day tasks.
It can also help to correct a previous misdiagnosis which may have resulted in inappropriate treatment, and it may help women and those with a demand avoidant profile to be recognised as autistic by others.
A timely diagnosis can therefore prevent people from struggling at school or work and developing mental health problems like anxiety or depression, which can lead people to reach crisis point if it goes on for too long.
In 2021-22, the government invested £10.5 million to test and implement the most effective ways to reduce diagnosis waiting times for children and young people.
They also invested £2.5 million to improve the quality of adult diagnostic and post diagnostic pathways and expanded the early identification pilot programme, which involves health and education professionals working together in schools to assess children who may be autistic or have other SEN.
However, it seems these measures have not gone far enough, with more people than ever before waiting for an autism assessment, and a further 7.2 million people waiting for operations and other treatment.
NAS says it is committed to holding the government to account and ensuring waiting lists are bought down as quickly as possible. Last month, 29 MPs joined NAS campaigners in a debate in Westminster Hall on autism and ADHD assessment delays.
The debate was kickstarted by Jess Tomlinson and Sonya Mallin, both of whom waited years for their children to have autism assessments.
Sonya said she hadn’t heard from a single family who has had a “positive experience” with receiving an autism assessment on the NHS.
“At the very least, we should expect the assessment to take #MonthsNotYears. Although it’s great to see many MPs speaking out about diagnosis delays, now is the time for action, and I urge them to support more funding to reduce waiting times,” she said.
NAS is now contacting the MPs who spoke at the debate to support them to continue to raise awareness of these issues. They are also working with NHS England to make diagnosis data more robust, so all areas can be held to account for carrying out a diagnosis in good time.
