‘I cried’: How people with suspected autism are doing their own research due to long waiting lists

People facing a long wait for diagnosis of suspected autism are suffering increased anxiety and poor mental health – often without any support.

New research has found that three in five individuals on the waiting list still haven’t been assessed after a year – despite the target being 13 weeks.

In fact, only one in 11 are seen in that timeframe.

It’s 18 months since Aimee Drescher went to her GP in London seeking a diagnosis.

“I started talking to a therapist that I had at the time, about maybe getting a diagnosis, and she thought that would be a good idea,” she said.

Aimee says she always felt different – not understanding the way her friends thought, struggling to keep eye contact or being seen as “weird” for obsessing about certain topics – and decided in her late 20s to seek help after speaking to her therapist about it.

“I was given a test to do by the NHS where you had to score a certain score to get even onto the waiting list,” she said.

“I didn’t hear anything at all back so after two weeks, I reached out and they said the waiting list will be 18 to 24 months long… and I haven’t heard anything since.”

‘I cried reading about autism’

Instead, she began reading about autism.

She said: “I actually cried at some passages, and I underlined a lot because I had never experienced anyone articulating these feelings and thoughts that I had that I couldn’t even articulate myself.”

It’s had an impact on Aimee’s mental health, but she has been fortunate enough to pay for her own therapist.

Brain in Hand, an organisation which provides digital and one-to-one help for those with autism, says 99% of the people it helps get their treatment publicly funded – so there is hope for those seeking support.

But a new survey, carried out by Brain in Hand, revealed that 70% of people with autism have received no support at all – that’s despite 93% saying the state of their mental health is having an impact on their life.

And only 6% described the help they had been given as having met their needs.

Autism not ‘destiny’ but ‘preventable’

Dr Louise Morpeth, Brain in Hand’s CEO, estimates there are as many as 1.5 million people with autism in the UK.

“The outcomes that they will experience – things like a higher chance of suicide, less likely to be in work – it feels like it’s a sort of public health crisis that hasn’t been acknowledged,” she said.

“And it’s something that we can do something about. This isn’t a destiny. This is something that’s preventable.”

She also added that it would make sense “at an economic level” to help as many people as possible.

Dr Morpeth explained: “Why aren’t we making it possible for people who are autistic to be in work?

“That would be a win-win for everyone so I feel these statistics should be a bit of a slap in the face for us.”

Read more:
The crisis in children’s mental health services
TV writer reveals how Desert Island Discs led to autism diagnosis

A lengthy waiting list

The latest NHS figures reveal that in September 2023, there were close to 158,000 patients with an open referral for suspected autism, 85% of whom were waiting beyond the 13-week target.

A spokesperson for the Department of Health and Social Care said it’s aware that “it’s vital to have a timely diagnosis of autism”.

In a statement, they said: “We’ve made £4.2m available this year to improve services for autistic children and young people, and the NHS Long Term Plan will expand and transform mental health services in England with at least an extra £2.3bn a year by March 2024.

“NHS England has published a national framework and guidance on how people can receive a timely assessment and provide support before and after a diagnosis.

“We expect all integrated care boards and NHS Trusts to follow the clinical guidelines on autism published by the National Institute for Health and Care Excellence.”