24 April 2024

Neurodiversity is usually just part of being human

With referrals for ADHD, autistic spectrum disorder and other conditions swamping the NHS, we need to rethink medicine’s role in them.

By Phil Whitaker

Avril was wondering about an assessment for autistic spectrum disorder (ASD). “I’ve always been very sensitive to noise. And I have to stick to routines – I really don’t cope well with things changing at the last minute.”

“I guess we could call those symptoms,” I said. She was 45, married with two daughters and established in a good career. “I suppose what I’m wondering is: how would an assessment change things for you?”

“Well…” she paused for a moment, “I would certainly understand myself better.”

These kinds of requests are common now: adults, functioning objectively well, but suspicious that their brain is harbouring neurodiversity. It’s one of the trends underlying the Nuffield Trust report, published in early April, which portrayed an NHS overwhelmed by demand. More than 170,000 children and adults are currently awaiting ASD assessment – a lengthy, detailed process – with referrals having gone up five-fold since 2019. At the time Avril consulted me, our local service had a waiting time of over four years.

Avril would have spent a lot of time researching online, and everything she’d been reading would have pointed to her being somewhere on the autistic spectrum. She will never have come across people severely disabled by autism. People like my patient Keith, who lives in an adapted bungalow with two carers always on hand. He cannot speak, never wears clothes, and will unpredictably hit or seize anyone coming anywhere near. Or Lori, nearly 16 now, also non-verbal, and so averse to the sensation of anything in her mouth that, since she was four, she has had to be fed through a tube through her abdominal wall.

Keith and Lori represent the price that evolution exacts from society for the benefits of neurodiversity. All such neurodevelopmental conditions have a genetic basis. A small minority of people inherit a heavy load of the relevant genes and experience severe disability. But for every Keith or Lori there will be many others with traits – the kinds of things Avril had noticed – which have never significantly held them back.

Neurodiversity is essential to human society. Avril’s traits endow her with capabilities important for personal and societal success. I talked her through some – attention to detail, reliable completion of tasks, sustained focus on the matter in hand, strong at spotting patterns. She laughed as she recognised herself in the portrait I sketched. She could immediately see how those aspects of her character made her such a good accountant.

The same is true of all other neurodiversities. Attention deficit hyperactivity disorder (ADHD) traits include creativity, impulsivity and risk-taking – it is highly likely that Leonardo da Vinci had these. Dyslexia is associated with entrepreneurship and creative flair – Richard Branson has termed it his “secret power”. Dyspraxia, or developmental coordination disorder, has strong links with “big-picture thinking” and problem-solving.

There are no medical “treatments” for neurodiversity, other than the drugs used in ADHD – which should be reserved for those with major disability. Always we should be thinking of how social norms clash with diverse brains. ADHD is problematic because we expect schoolchildren to sit and concentrate for long periods. Dyslexia only exists in societies that have a cardinal role for written communication.

The Nuffield Trust has called for a sea change in the way we approach neurodiversity: we cannot continue conceptualising the phenomenon as a medical issue. Those substantially disabled by the roulette of genetics certainly require help and support. Beyond that, there is no such thing as “normal” – we are all ragbags of strengths to be appreciated, weaknesses to be accommodated, and mediocrity to be improved or brushed off. We badly need to rediscover the novelist’s appreciation of the infinite variety of human character, celebrated without a compulsive need to diagnose.