Rachael Lucas struggled for a decade to get her daughter Verity, now 16, diagnosed with autism. In the process, “my parenting was called into question”, the 41 year-old author explains. She was probed “about the state of my marriage”, and schoolteachers theorised darkly. Doctors who met Verity were worried about the girl’s mental health issues – she was “struggling”, Lucas says – and extrapolated that there must be something wrong at home. Finally, three years ago, at 13, Verity was diagnosed; Lucas had suspected that Verity was autistic since her daughter was a toddler.
And this is a typical meandering narrative: while healthcare professionals wield proper diagnostic framework, it is parents monitoring their infants nearly 24 hours a day – especially in the early years – who have the initial intuition that there is something wrong, and put their children into the system. Some diagnoses are hard-won, like Verity’s; others are more straightforward.
And others, in some postcodes, might never happen at all. This week, it was announced that NHS commissioners in southwest London are considering proposals to reduce the number of children being diagnosed with autism: instead, formal diagnosis would be limited only to the most severe cases, focusing specifically on children also displaying signs of another condition, like depression. Board papers from a meeting of southwest London and St George’s mental health trust, in mid-May, state that “the effect of reviewing and revising the criteria must be to reduce the number of children and young people who are able to access a full diagnostic assessment from the trust”.
Undeniably, the system is under extreme pressure: the waiting time for an autism diagnosis there is 10 months, the team is supposed to carry out 750 assessments per year, but is getting almost twice that level of demand.
With girls on the spectrum, there is a high incidence of self harm and eating disorders
Parents, though, are rightly disturbed. Emma Kingsley, the mother of two autistic boys, started a change.org petition, which at the time of writing is 690 signatures off its target of 2500, which was being shared by other parents across Facebook this week. “I’m concerned about this as autism is not just a diagnosis,” wrote Kingsley. “It is a neurological difference. Without the diagnosis there is no support financially or medically for the autistic person, child or families of autistic people. The diagnosis of autism is vital for autistic people to access this support – without it, the results could be catastrophic. Neuro-diversity has the right to be recognised and celebrated. No diagnosis, no voice.”
Signatories agree. One mother wrote, “I feel saddened that children might not get the diagnosis many desperately need to help them flourish and grow into independent people.”
Lucas says the proposals are “absolutely horrific”. She notes, too, that it could impact the diagnosis of girls disproportionately. “The masking element means that girls fly under the radar,” she explains. “They are going to be severely distressed. With girls on the spectrum, there is a high incidence of self harm, eating disorders.”
“A diagnosis is a really important step,” agrees Tim Nicholls, policy manager at the National Autism Society. “It helps people take control of their lives, helping to unlock barriers to essential support and services, enabling families to better understand their child and providing an explanation for, often, many years of feeling ‘different’.” He adds that children who have not been diagnosed can develop mental health problems, as Lucas’s daughter Verity had done. Moreover, it can also have a knock-on effect on their families, who can find the burden of supporting their child without formal intervention very tough.
And it doesn't stop in childhood. “A failure to get the right support at the right time can have significant consequences – to school, home life and later on in employment," Nicholls adds. "And the longer someone lives without the right support, the greater their needs will be.”
Indeed, Lucas has felt this keenly: in extraordinary circumstances, during her struggle to get Verity diagnosed, a doctor suggested that she should also chase her own diagnosis of autism. “I’d had mental health problems since childhood,” Lucas says. “And in my early twenties, I was experiencing depression and anxiety. I found holding down a job very hard.” She was finally diagnosed at 41, three years ago. “I spent 40 years worrying. The main thing about diagnosis is that you make allowances for yourself, you don’t think, ‘I’m shit and useless’.” In other words, the immeasurable value of diagnosis is not just about providing a formal label that can enable formal support. It is also about reassuring an autistic person that their neurology is not wrong, simply different. In this spirit, Lucas has since written a Young Adult book, The State of Grace, whose main character, a teenage girl called Grace, has Asperger’s Syndrome. “Girls have picked up the book and said, I recognise myself.”
Nicholls notes that the proposals are also short-sighted: while intended to save money, ending an obligation to pursue all cases could end up incurring more costs. "Getting the right support early also helps prevent someone developing more significant needs,” he says. “This is not only better for the individual and their family, but also saves money, as you rely less on urgent or intensive support.”
And lastly, the proposals corroborate a system that, he says, is already imbalanced against autistic people, who “all too often face health inequality”. Indeed, such inequality has been acknowledged in the Government's Mandate, which specifically tasks the NHS with reducing health inequality for autistic people. These proposals contravene that assurance. Lucas puts it more simply: “A diagnosis is life-changing.”