Elizabeth, a mother-of-one from North Tyneside, was referred for an autism assessment in November and was told it would be 18 months before she was seen.

When she rang back six months later, the waiting time had gone up to 23 months. So she was effectively no further forward.

“It now feels like an infinite waiting list where I’m always 18 months away from getting an assessment and I’m never getting any closer,” she said.

I’m not a priority because if you look at me, I look like I’m functioning. But I am regularly having periods of time off sick from work with burnout and I’m struggling to manage.

Elizabeth’s 11-year-old son was on the waiting list too, after being referred to Children and Adolescent Mental Health Services in January 2021. But 18 months later, the NHS asked her if they could refer him on to a private company called Healios.

She agreed, and he was assessed recently for autism and ADHD. They are waiting to get the results.

For her son, she thinks the diagnosis is important for his identity and knowing how to look after himself, as well as to secure tailored support and the adjustments he needs in school.

For herself, she wants to understand herself better and to stop trying to measure herself against the norm. “The reason I want a diagnosis is to be able to stop thinking of myself as a useless, broken human being,” she said.

“If I get a diagnosis, it will be validation. Maybe I shouldn’t need that, but I do because society is quite harsh about these things.

“It’s about not comparing yourself to other people but instead thinking, ‘no, I function differently, and I have to measure my success in life in a different way’.”

See our story on waiting lists