An intense debate has broken out over the rate at which autism is being diagnosed, and whether the diagnosis itself still means anything. It follows an argument by one of Britain’s most influential autism researchers that the spectrum has become too broad to be useful.
Professor Dame Uta Frith, the UCL cognitive neuroscientist, writing in the journal Psychological Medicine, says the diagnostic threshold has been lowered so far that some people now diagnosed particularly in adulthood may not be autistic at all. In 1960s Britain, roughly four in 10,000 children were diagnosed. Today, it is around one in 57 schoolchildren. She proposes splitting the spectrum into different categories.
I have been writing about autism and special educational needs for about 10 years. I am autistic myself, identified, as many women are, well into adulthood. Frith might look at me, articulate, relatively successful, happy marriage, close friends, mum of two boys, and assume I am not really autistic. But she would be wrong.
The honest truth is that I find describing my autism (and ADHD) hard. How am I meant to know how my sensory experience differs from yours? I would like a brain transplant for a day, just to try a neurotypical one out. What I have noticed is how much I have in common with my neurodivergent peers, and with my children: the literal thinking, the anxiety, the limited social battery, the stress of noisy places, interrupting too much, not being able to stop my brain pinging about. Ping ping ping.
Obviously, I don’t expect a few sentences from me to settle either of Frith’s claims. But I do think we need to find a way to have the conversation about diagnosis rates, which is uncomfortable for the autistic community but not going away.
So, while I disagree profoundly with Frith on both counts, I wanted to know what parents in other situations made of it. I spoke to three mothers of autistic children, one of whom is autistic herself. Their lives and challenges are in some cases radically different from mine. Does it make sense that their children and I share a diagnosis? Should there be a way of distinguishing between someone like me and a child like theirs?
Joanna Richardson is 44 and works part-time in retail in Dumfries and Galloway. Her son Gabriel is five: non-verbal, with a cerebral visual impairment, severe global developmental delay and suspected epilepsy. He cannot be left alone. He is also, she says, the only child at his nursery who worked out that the fire alarm release at wheelchair height would open the internal door. “He’s a really intelligent boy that’s not made for this world.”
I asked her whether there should be a way of distinguishing between someone like me and someone like her son. Her first instinct is that there should. “People don’t understand how someone with autism who has a job, who goes to school, is the same as someone like my son,” she says. “On a piece of paper, I don’t know if a person reading it understands my son’s needs by just seeing the word autism.”
And yet, pressed on whether a separate category, “complex autism”, say, would actually help him, she hesitates. “This is a million-dollar question,” she says. “I would hope in a medical setting and in a school setting, yes.” Then she stops, and wonders whether it could lead to professionals underestimating him. “Would they then make the assumption that he doesn’t need support, when he actually does? He’s five years old. I have no idea what he’s going to be like in 20 years’ time.”
Laura Brown, with her son Ethan: ‘I hate terms such as ‘severe’ or ‘profound’ autism – it’s damaging and wouldn’t result in any extra support’Laura Brown has no such hesitation. She is 37 and runs her own social media management and training company. Her son Ethan turns seven in October. Diagnosed as autistic just after his third birthday, he also has a working diagnosis of childhood apraxia of speech; he is non-speaking as a result. He communicates through an AAC device, a tablet-style aid that speaks aloud the words he selects, and through Makaton, a system of signs used alongside speech. He attends a specialist school and understands everything said to him.
“I disagree entirely that autism has become too broad, and I hate the idea of the introduction of terms such as ‘severe’ or ‘profound’ autism,” she says. “These would be very damaging, and they wouldn’t result in the extra support that many parents are hoping for. I foresee the total opposite.”
Brown, who was herself diagnosed autistic a year after her son, says she has “witnessed professionals giving up on him from the word go”: holiday clubs that turn him away, research studies that exclude him. New categories, she believes, would compound it all.
She uses high, medium and low support needs to describe her son. But she hates the assumption that non-speaking means not understanding. “It is incredibly dangerous, and could hugely harm his potential.”
Jane (not her real name) has a 12-year-old son in London who was identified earlier this year. His difficulties are almost entirely social, she says, and mostly confined to school. “If you’re on a bench, he’d push up to you too hard and annoy the other person,” she says. “And when they got annoyed, he wouldn’t know when to stop.”
A decade ago he would most likely have been diagnosed with Asperger’s syndrome. In 2013, the American Psychiatric Association abolished it, along with the other autism subtypes, and folded them all into a single autism spectrum disorder, precisely because the subtypes had proved unreliable.
When I asked Jane if she would prefer her son to be known as Asperger’s, she rejected the idea of labelling at all. “I don’t really think we should be labelling children with any of it,” she says. “At the end of the day, it’s him. Not everything about him is autistic, is it? It’s just a part.”
She is equally unconvinced that subdividing would help. “I’m not sure it’s going to benefit a child by saying you’re this level, or you’re the worst level.”
Dr Jenna Vyas-Lee, a clinical psychologist and clinic director at Kove Minds, which assesses and supports neurodivergent children, says people don’t always understand what the spectrum means. “People often imagine autism as a spectrum that runs from ‘less’ to ‘more’ autistic,” she says. “After working with hundreds of children and families, I find it much more helpful to think of autism as a colour wheel. Two children may share the same diagnosis but present completely differently.”
I feel strongly that being autistic is part of what makes me me, and that you can’t be mildly or severely autistic any more than you can be mildly or severely gay. And Frith’s suggestion that some late-identified cases may not be autistic does not take sufficient account of who those late-identified people tend to be. A significant proportion are women and people of colour. There is a clear reason for that: the criteria for identifying autistic people were built out of research on white boys.
I hope in time this debate becomes less polarised, and less stressful. My two boys are growing up knowing they are neurodivergent, and knowing what that means in both directions: that it presents challenges in some areas (not because of their brains, but because the world has been built for non-neurodivergent people), and that there are things they are brilliant at. What I want for them is a precise idea of both. I want them to be proudly neurodivergent. But most of all, I want it not to be a thing: no need to debate it, or to defend it. It’s just part of what makes them brilliant.
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