Dame Uta Frith is the developmental psychologist and neuroscientist who helped shape how doctors and practitioners understand autism today. Nearly 60 years ago she identified autism as a neurodevelopmental disorder that is life-long, rather than damage caused by so-called “refrigerator mothers” not engaging with their babies and toddlers.
Her research led her to pioneering the “theory of mind” approach, which proposed that people with autism struggle to attribute beliefs to others, and that while they could process details it was hard for them to see the whole picture. Her 1989 book Autism: Explaining the Enigma became a classic introduction to the cognitive science of autism.
But in recent years there has been an upwards trend in autism. In the last 25 years there has been an almost 10-fold increase in diagnoses of autism, while the number of children with Education, Health and Care Plans (EHCP) has tripled in the past decade. Now the government has set up an independent review into rising demand for services for mental health, ADHD and autism, which is set to report later this year.
The rise in autism diagnoses in adults and young girls, has unsettled Dame Uta, who is emeritus professor in cognitive development at the Institute of Cognitive Neuroscience at University College London (UCL). Last week she gave an interview to the Times Education Supplement saying she no longer believes that autism is a “spectrum”. Previously identifying people with autism was “quite precisely defined” but as this narrowly left out some it was thought it should be extended and become more inclusive.
“But that still wasn’t enough. Because of various cultural factors, the spectrum has gone on being more and more accommodating. And I think now it has come to its collapse.”
She describes autism split into two subgroups, those whose situation was discovered in early childhood, and those who are seen as autistic later. “This population is different. It is made up of a lot of adolescents, and among them, a lot of young women. These are people without intellectual impairment, who are perfectly able to communicate verbally and non-verbally, but who might feel highly anxious in social situations. They are perhaps characterised mainly by a sort of hypersensitivity.”
She is eager to say that she doesn’t think the high rate of increase among the second group is because they are “making it up”. But she posits the theory that they would benefit from being treated differently from the people in the first autism group, with intellectual disability.
The interview goes onto discuss her thoughts on a range of subjects around autism, from masking to brain-imaging, and taking in the ways that different groups on the autism spectrum might benefit from teaching.
She is aware that by speaking out she may upset some people, but as a scientist she is driven by data. Speaking to The Times she expressed concerns that rigour could be easily lost. For example, young adults who have self-diagnosed with autism after reading about it online or on social media and coupled it with their extreme social anxiety, but who have excellent communication skills.
Overdiagnosis dilutes research, Frith told the Times because it mixes groups with potentially different biological causes and different cognitive dysfunctions. “This makes the data we obtain from large groups very noisy.”
She even says autism has “become glamorised, and a diagnosis has become somewhat desirable”. As she said in the TES “many people are self-diagnosing before they are assessed. I have heard from clinicians that they feel themselves to be under severe pressure to give the diagnosis, if the person has waited months or even years and feels absolutely sure that they’re autistic.”
Many of Welldoing’s therapists work with people who are on the autism spectrum, or believe they may be. To find a therapist who is right for you, go to https://welldoing.org/.
