The age of those seated in the NHS adult mental health services waiting rooms is the most obvious indication that something has changed. The surprise is no longer the grey-haired man leafing through a pamphlet. The 32-year-old woman next to him, wearing noise-canceling headphones and browsing through a saved Notes app full of questions she wants to ask, is becoming more and more surprising. For ten years, she has been considering this appointment in one way or another.
That scene’s numbers are startling. Between 1998 and 2018, the number of diagnoses in the UK increased by 787%, and it hasn’t decreased since. In just one recent year, the number of open referrals for suspected autism in England increased by half. However, according to King’s College London researchers, 89% of adults with autism between the ages of 40 and 59 remain undiagnosed, and that number rises to 97% after the age of 60. In a way, the thirty-somethings who are currently scheduling assessments are the bridge generation—young enough to have grown up online, where everything eventually has a name, and old enough to have been overlooked as children.
Overdiagnosis is a tempting term, and some medical professionals subtly use it. According to Exeter professor Ginny Russell, the boundaries of autism are “still moving outwards,” implying that they may eventually encompass individuals with only borderline traits. Others, such as Simon Baron-Cohen at Cambridge, see something different: a long-overdue correction, especially for women and girls who were taught from an early age to mask, mirror, and apologize for being a little out of step. Both points of view may be partially accurate, which is likely why the argument won’t go away.
The cultural pull is more difficult to argue against. TikTok accomplished what the NHS was unable to: it exposed autism to millions of people who had spent years believing that people with autism were just bad at parties or unusually exhausted after them. After watching a video about autistic burnout during her lunch break, a 34-year-old marketing manager in Manchester told a friend that she had finally scheduled an assessment. Speaking with people like her gives the impression that the language is more important than the diagnosis. They’ve spent a lot of time searching for the appropriate words.
Interestingly, Bath and King’s College London research indicates that the age at which you find out doesn’t always indicate whether your life will get better afterward. It’s not always a game-changer to receive a diagnosis in your thirties. It can be relieving at times. There are moments when it causes sadness—for the school years that could have been kinder, the connections that could have made more sense. The kind of finding that undermines the neat narrative that everyone wants this story to have is that co-occurring anxiety and depression were more strongly associated with poor quality of life than the diagnosis date itself.
In the meantime, waiting lists have developed into a silent scandal of their own. Depending on the clinician you choose, the postcode you live in, and the questionnaire that appears in front of you, some adult services are reportedly twice as likely to diagnose patients as others. People put their lives on hold while they wait two or even three years. Some give up and make private payments. Some come to the conclusion that once they understand themselves, the label doesn’t matter.
As this develops, it’s difficult to avoid the impression that the UK is slowly coming to terms with how narrowly it once defined a fairly broad human experience. It’s still unclear whether that results in everyone being consumed by autism, as Russell half-joked, or with a more accurate map of who was always present. The people in their 30s who occupy those waiting areas aren’t anticipating the response. All they’re doing is waiting to be noticed.