'You're not a priority if you don't have money': Student told to wait till 2043 for an autism assessment

Waiting for a crucial doctor’s appointment can feel endless, but what if that wait stretches to nearly two decades? That’s the grim reality for 21-year-old Chloe Pomfret, a student at the University of Oxford, who was told at the end of last year, that the next available autism assessment wouldn’t take place until November 2043 – 18 years from now.

“I think my initial reaction was, there’s no way this is true, right?” Chloe told Big Issue.

For the past two years, Chloe has been navigating the complex and frustrating process of seeking an autism diagnosis.

“I kind of always suspected it,” she explained. “But it wasn’t until I was 19 when my therapist said, ‘You’re clearly autistic. You know that, right?’ That validation was really important to me, and I wanted a professional diagnosis to better understand myself and access support.”

The bureaucratic maze of diagnosis

Seeking any medical diagnosis can be an emotional journey. It took Chloe two years to build up the courage to ask her GP for an autism referral. When she finally did, she was warned the wait could be up to four years – meaning she would have already graduated by the time she was assessed. Determined, she explored alternative options, including the NHS’s Right to Choose scheme, which allows patients to select their provider for assessments. Through this route, she was referred to Psychiatry UK, but encountered another major hurdle.

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“They wanted childhood evidence,” Chloe explained. “Letters from my parents. And that was the first bump in the road.”

Chloe grew up in foster care and is estranged from her biological family. Like many care-experienced individuals, she doesn’t have the luxury of being able to ask her parents for childhood evidence of autism traits, let alone write a letter on her behalf.

“They asked, ‘Is there nobody in your life?’ When I said no, they requested my foster care files. But I told them – there are about a thousand PDFs. Do you want to go through all of them?”

Even after providing a letter from her therapist, Chloe was repeatedly told that a parental statement was required. Eventually, she stopped hearing back.

An 18-year backlog

Then came the shocking email: the waitlist for autism assessments had been closed due to a backlog of 2,000 patients, which would take 18 years to clear.

The email came from Autism at Kingwood, an NHS-funded charity providing autism diagnostic and post-diagnostic services. It read: “We regret to inform you that the combination of a significant rise in referrals and a substantial real-term fall in funding have led to the decision that we can no longer accept referrals.”

“We understand that this is extremely disappointing… We ask that rather than direct your understandable dissatisfaction to our staff, please direct your concerns to Oxfordshire commissioners and your local MP.”

While the email was disheartening, Chloe wasn’t shocked. “You kind of get used to being let down by the system at this point,” she said, referencing her experience growing up in care. “It feels like if you don’t have the money to go private, you’re not a priority.”

New referrals, like Chloe, were informed of the up to 18-year wait list and signposted to the NHS England Right to Choose pathway via their GP as an alternative option.

After the email was sent, Sarah Butcher, chief executive of Autism at Kingwood wrote on the charity’s website: “Closing the waiting list was not something we wanted to do, but we believe we have a moral obligation to do this.

“We will continue to provide a diagnosis for those on our waiting list, and we remain hopeful that BOB (Buckinghamshire, Oxfordshire & Berkshire) ICB (Integrated Care Board) will be in a position to increase their funding to us in the future so that we can provide increased diagnosis for people in Oxfordshire.”

The growing demand for autism assessments

Chloe’s case is extreme, but she’s not alone. As of December 2024, 212,964 people were waiting for an autism assessment in England – a number that has more than tripled since the National Autism Strategy’s publication in July 2021. 

In response to the latest figures, Mel Merritt, head of policy and campaigns at the National Autistic Society, said: “An autism assessment can be the first step to really understanding people’s needs and, too often, people can’t get support without a diagnosis, although this shouldn’t be the case. An autism diagnosis can be life-changing and in some cases lifesaving.”

Chloe believes the increase in demand is due to greater awareness and reduced stigma surrounding autism. “For the first time, people feel able to seek a diagnosis,” she said. “But when you finally get the courage to ask for help, you’re told, ‘Oh, we can’t help you anyway.’ So what was the point?”

She is also frustrated by the lack of funding for diagnostic services. “The services are at breaking point; there’s no funding and no support. So what do you expect?”

Though the email from Kingwood suggested individuals could self-identify as autistic, if they felt comfortable in doing so, Chloe pointed out the limitations of this approach. “Self-diagnosis isn’t legally valid,” she explained. “So what do they want me to do? Just navigate the world and hope I fit in?”

In the UK, self-diagnosis does not grant legal protections, but individuals can still request workplace accommodations. Chloe worries about what will happen when she leaves university and enters the workforce. “Right now, I have really considerate tutors who support me. But what happens after that?”

What needs to change?

The impact of long wait times is far-reaching. Delays in diagnosis often lead to worsening mental health and missed opportunities for early intervention. With waiting lists surging, many individuals are left without the critical support they need.

Chloe’s case highlights systemic issues in accessing autism diagnoses, particularly for care-experienced or estranged individuals and those unable to afford private assessments. MPs and healthcare commissioners have been urged to address the crisis, but without increased funding, waiting lists are only set to grow.

In her statement, Mel Merritt emphasised the need for immediate action on this front: “Autistic people face a constant fight for support, which often starts with long, traumatic waits for a diagnosis. The government must provide urgent funding for diagnosis services to end this worsening crisis, and make sure autistic people and their families get the support they need when they need it.”

Chloe remains sceptical about political action. “There are maybe one or two MPs who push for better SEN (special educational needs) support, but it’s not going to change for years,” she said. “I am politically active, and in an ideal world, everybody’s voice matters. But realistically, you’ve just got to sit around and wait.”

For now, that’s exactly what she has to do – wait.

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