People waiting for a formal autism diagnosis are enduring “traumatic” waits of more than two years for their first assessment, HuffPost UK can reveal.
National guidelines say assessment should begin within three months of a patient being referred to a trust for diagnosis – but new data shows adults in England faced waits of up to 122 weeks for an appointment in 2017/18.
Meanwhile, children as young as five were stuck on waiting lists for up to 98 weeks.
Of the 20 NHS foundation trusts which responded to FOI requests on child waiting times, seven admitted that under-18s waited an average of a year or more for their first autism assessment appointment.
It means 2,978 children – or 36% of all those referred – faced a wait of 12 months or longer. More than 1,500 adults encountered the same hold-up upon referral.
Patients and their families have described the delays – which experts blame on “overstretched services” – as stressful, painful and frustrating.
Meanwhile, campaigners have condemned the long waits for keeping people – many of whom are “desperate for help” – from getting a “life-changing” diagnosis.
Suzy Yardley, deputy CEO of Child Autism UK, said children were being deprived of “crucial support and help” that is unlocked with a diagnosis.
“During that wait, children are often exhibiting extreme behaviours – they may have been excluded from school – and parents are very stressed,” she said.
“In most cases professionals involved in assessments are doing the best they can, but with very limited resources across all parts of the special educational needs system, there are fewer staff to see more children.”
Michelle Thomas and her five-year-old son were forced to wait a year for his autism diagnosis – a delay that left the boy’s self-esteem “absolutely battered”.
Without the additional educational support that often comes with a diagnosis, things got “worse and worse and worse” at school for Michelle’s son, who often “lashes out and has meltdowns”.
“I used to go in to pick him up and I would wonder what they were going to tell me about what he had done wrong that day,” Michelle said.
“There was one sports day where they had rehearsed things in a certain order, but they then changed it without explaining. So he thought he was running the 200m race, but they had changed it to the 100m.
“He kept running – he didn’t get that he had to stop. A teacher had to chase him – I could just imagine everyone going: ’Oh God, that child – he doesn’t listen.”
She added: “His self-esteem was absolutely battered when he left that school and it’s horrible to see that in such a little child.”
Having been home-schooled for nine months, the nine-year-old was given a place at a specialist provision school after being diagnosed.
It was a similar story for Steven Daws and his 13-year-old daughter Belicia, who was referred for an autism assessment three years ago.
Forced to wait 12 months for a diagnosis, “by the time she left primary school, she didn’t want to go to school,” Steven said.
Stuck in a class of more than 30 pupils without any one-to-one support, Belicia struggled to get to grips with subjects like maths. “She just couldn’t get her head around it at all and she got very upset and frustrated because she wanted someone to help her.”
But her autism – and her lack of diagnosis – meant she was left struggling “because she couldn’t communicate how she wanted help”.
“When we were first referred, although the doctors said there was a long waiting list, we thought it would be six months at most. That was our idea of a long time.”
Belicia’s case was eventually passed to another NHS trust as the first one could not handle the sheer volume of referrals.
According to data obtained by HuffPost UK, on average children waited 36 weeks for their first autism assessment appointment in 2017/18 – almost three times longer than guidelines recommend.
For adults, the average wait was 39 weeks – approximately nine months.
Nicky Clark, who was diagnosed with autism aged 50 after an 18 month delay, described the period she spent on a waiting list as a “rollercoaster ride”.
“When I was referred for autism assessment back in 2015, there were only two psychiatrists who were diagnosing autism in the whole catchment area,” she said. “They had a massive, long waiting list.”
The mum-of-two – whose daughters have both been diagnosed with autism – sought diagnosis after her counsellor suggested she too may be autistic.
“The not-knowing – but at the same time knowing – is very difficult,” said Clark, who is also a campaigner.
For some, the prospect of waiting months and months for an assessment is enough to push them to seek a private diagnosis.
One woman from the north east – who asked to remain anonymous – tried to get an autism assessment aged 58 after years of difficulties at work. “With only a few years left to work until I retired, I thought: ‘I just can’t bear this pattern.’”
Having been signed off work with stress and anxiety – and being told by her GP she was a “strong woman” who would be able to cope – she decided to bypass NHS waiting lists altogether after being told they were 18 months long in her area.
“I’m not keen on going private – it’s not normally the way I would do things because it feels a bit like queue-jumping,” she said.
“On the other hand, because I was off work and we are dependent on my income to survive, I thought: ’Actually, this is an investment. I’m going to spend this money, but if it gets me back to work, that’s what I need.
“I began to feel like I would never get back to work if I stayed off work longer-term – that it would be impossible,” she added, saying she wanted at least some working years where she could ask for “reasonable adjustments”.
“Many autistic people and their families describe a diagnosis as life-changing,” said Tim Nicholls, head of policy at the National Autistic Society, blaming “poor or overstretched” services for the delays.
“It can explain why someone has always felt different, help them unlock vital support and enable people to take control of their lives,” he continued. “Long waits can be traumatic for autistic people and their families, who are often desperate for help.
“Without that help, many develop mental health problems like anxiety and depression and can be pushed to crisis point.”
Commenting on the figures, Barbara Keeley – the shadow minister for mental health and social care – said no-one should be forced to wait so long for a diagnosis.
“The failure to address these long waits for assessment points to an NHS under extreme pressure,” she said.
“The NHS Long Term Plan committed to reducing waiting times for diagnosis and yet many thousands of people are still waiting for initial assessments. It’s vital that the government sets out how it plans to achieve this aim, and how it will fund assessment services properly to bring waiting lists down.”
A spokesperson for the department of health and social care said autistic people “deserve a timely diagnosis to help them access the right support”.
“That’s why increasing the help available for autistic people is one of the top priorities in our NHS Long Term Plan, which commits to reducing waiting times for children and young people.”
Official diagnosis waiting times are being collected and will be published for the first time “in coming months”, they continued.
“We are making progress to improve care and support for autistic people of all ages and the majority of local areas now have a diagnostic service, with record numbers of people receiving a diagnosis.”
A NHS spokesperson added: “Local authority, special educational needs, and NHS services all need to work in tandem to respond to rising numbers of people with an autism diagnosis.”
New NHS figures will “shine a light on further improvements to care”, they said.