Sarah Boon

*Please note this is a critique of the content of the ‘Uta Frith: why I no longer think autism is a spectrum’ article and not of the person’s character*

For the last several years, there has been intense discourse around the increasing recognition of neurodivergence, particularly autism and ADHD. So I was intrigued when I saw a headline where Uta Frith claimed autism was no longer a spectrum. I was curious to see where she was coming from and then became increasingly disappointed to see her views played into the harmful narratives that are growing around overdiagnosis. 

The article sought to highlight the “strain” on the system from the growing recognition of Special Educational Needs and Disabilities (SEND) in children and young people. The tone came across as if the students themselves were the problem because mainstream education couldn’t meet their needs, rather than the system not being set up for any child falling outside of what is considered “normal”. 

After giving a deficit-based view of autism, Uta then goes on to remark that broadening our understanding of autism from a ‘single condition’ to a spectrum is apparently ‘meaningless’. 

“But that’s very difficult, because what’s notable about being part of a huge spectrum that we all belong to? We’re all neurodiverse; we can accept this because all our brains are different. But it makes a medical diagnosis completely meaningless.”

Unfortunately, there are a few errors here. Firstly, not everyone is “on the spectrum”, as that would imply that every person in the world is autistic, which is clearly not true; otherwise, there never would have been a need to differentiate our reality from non-autistic people. We are indeed all neurodiverse, but as you go on to read the sentence, it appears that Uta has conflated neurodiverse and neurodivergent, which are not the same. 

Neurodiverse = A group of people whose minds differ significantly from each other. 

For example, if a group had a mixture of neurotypical people, autistic people, and people with OCD, then it would be neurodiverse. Neurodiverse describes the diversity within a group and not a single person. 

Neurodivergent = People whose minds function in a way that diverges from societal norms (also being increasingly referred to as neuronormativity). 

No one individual can be neurodiverse, as it describes a group of people, not an individual. If you are looking to describe a person who is not neurotypical, the term you are likely looking for is neurodivergent. The fact that we are all neurodiverse doesn’t cancel out the need for many autistic people to have a word, such as autism, to better understand and advocate for ourselves. 

“People still hang on to the idea that there is something that unites all the people who are diagnosed as autistic. I don’t believe that anymore.”

No two autistic people are the same, and autism can present on the outside in many different ways. However, the thing that unites us is our differences in social communication, sensory differences and need for predictability. There can be huge variations in all three of these areas among autistic people, but the fact that we have significant differences in these key areas compared to most non-autistic people is a shared characteristic, even if these differences show up in very different ways among autistic individuals. 

Uta then goes on to advocate for going back to viewing autism into two big subgroups.

“I think at least we have two big subgroups: the people who are diagnosed in early childhood – usually before age three or age five, depending on things like their intellectual abilities and language – and another group, diagnosed much 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.”

In my view, these are based on two stereotypical views of autism. The social awkward genius and autistic people with the highest level of support needs who cannot communicate using spoken words. Reality is that the vast majority of us exist somewhere outside of this binary view of autism. Myself included. Most people assume that I am in the “second category” that Uta describes, but that is not the case. I fit neither of the tropes presented here. I was late diagnosed, but I also couldn’t use spoken communication until much later on in life. My autism was misdiagnosed as a “language disorder” at 4 years old, and I received a lot of speech and language therapy throughout most of my primary school years. I would also add that there is research that has estimated there is an underdiagnosis of autistic people with intellectual disabilities too (O’Nions, 2023), so Uta’s indication that autistic people with intellectual disabilities are all diagnosed between 3 and 5 years old doesn’t add up either. I worry that going back to subcategorising autism in such a way will mean most will rely on stereotypes more than many do now, and a lot of autistic people will go unrecognised and not access the support they may need. Especially as Uta later advocates for limiting autism to the first group she describes above. 

Speaking as an autistic woman, I found the tone directed towards autistic women and girls deeply misogynistic. My autism was denied by many people, and I was fobbed off by the system many times as just being “anxious” when that was only a small part of the picture. The source of a lot of my anxiety came from being an autistic person whose needs weren’t being met, and the discrimination I faced for my neurodivergence (including the things I now understand about myself as part of being autistic). Without getting recognised as autistic, then I’d likely still be experiencing the higher level of distress of not understanding why I was so different from most other women and alienated for not fitting in. I know I am far from the only late-recognised autistic who has gone through this. There are countless numbers of us now opening up about our experiences across the internet and in the public domain. 

The article then takes a turn for the worse by undermining lived experience perspectives of masking by proclaiming that “We all mask”, and the exhaustion that autistic people have shared around masking could be attributed towards other things. Uta also claimed there was no scientific basis to masking and implied that knowledge about autism can only be valued via scientific understandings. Essentially dismissing a significant number of autistic people who have had no other choice but to mask to survive, and the impact it has on our lives, just because the knowledge we bring to the table sits outside of what Uta views as traditional scientific methods. She tries to palm us off as “hypersensitive” for not fitting a narrow view of autism. A term that has been weaponised against a lot of autistic people when advocating for our needs. Additionally, I worry about the implications that the “ they are just hypersensitive” view has on autistic people being incorrectly misdiagnosed with personality disorders, in particular, autistic women and EUPD/BPD (Tamilson et al., 2024). A prevalent issue in the UK, where both Uta and I reside. 

Also, research suggests that autistic people often have additional things to mask compared to non-autistic people (such as stimming and responses to sensory stimuli), and the links between autistic people masking and suicidality (Cassidy et al., 2021; Miller et al., 2021), which Uta fails to mention. Despite Uta’s implication around the science of autistic masking, there has been research into this area; a quick search on Google Scholar brings up over 60,000 results. So her argument around there being  “no scientific basis” for masking is inaccurate. There are multiple serious claims here that could contribute towards a lot of harm to autistic people, which I find deeply concerning. 

In particular, I am concerned that this was published on the TES website, a leading publication for educational professionals. Many autistic children have an awful experience in school, in part due to schools often not being set up to meet their needs and a lack of training around neurodivergence for school staff. So if articles of this nature are what schools are getting over sufficient training and resources in a lot of cases, then what does this mean for the autistic children within our schools? 

I dread to think. 

Although not mentioned explicitly in the article, another thought did come to mind when reading. Academia may feel threatened by the challenge autistic people are now bringing to the ivory towers. Most autism research has been dehumanising of us and misaligned with autistic people’s priorities for autism research (Cage et al., 2024; Pellicano et al., 2014), something which has only been questioned more recently. Many academics have spent decades building their careers on subjecting epistemic injustices towards autistic people. Increasingly, some are seeing the value of also understanding autism outside of scientific methods and the growth of living experience knowledge around autism (Botha, 2021). After all, the dehumanising bias in most scientific work about autism hasn’t exactly translated into resolving the issues autistic people are frequently up against. My personal view is that research and living experiences of autism can complement each other if co-production is done well. However, if autism researchers are outright dismissing the living experiences of autistic people and don’t see us as partners in knowledge production, then you have to question ”why?” 

If you enjoyed this post and like to support my writing, I would be forever grateful if you could buy me a coffee (or tea in my case).

You can also support the blog by purchasing my book ‘Young Autistic and ADHD: Moving into adulthood when you’re multiply neurodivergent’.

References:

Botha M (2021) Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production. Front. Psychol. 12:727542. doi:10.3389/fpsyg.2021.727542.  

Cage, E., Crompton, C. J., Dantas, S., Strachan, K., Birch, R., Robinson, M., Morgan-Appel, S., MacKenzie-Nash, C., Gallagher, A., & Botha, M. (2024). What are the autism research priorities of autistic adults in Scotland? Autism, 28(9), 2179-2190.

Cassidy, S.A. et al. (2020) ‘Is camouflaging autistic traits associated with suicidal thoughts and behaviours? Expanding the interpersonal psychological theory of suicide in an undergraduate student sample’, Journal of Autism and Developmental Disorders, 50(10), pp. 3638–3648. Available at: https://doi.org/10.1007/s10803-019-04323-3.

Miller, D., Rees, J. and Pearson, A. (2021) ‘“Masking is life”: Experiences of masking in autistic and nonautistic adults’, Autism in Adulthood, 3(4). Available at: https://doi.org/10.1089/aut.2020.0083. 

O’Nions, E. et al. (2023) ‘Autism in England: Assessing Underdiagnosis in a Population-Based Cohort Study of Prospectively Collected Primary Care Data’, The Lancet Regional Health, 29(1), pp. 100626–100626. Available at: https://doi.org/10.1016/j.lanepe.2023.100626. 

Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756-770.

Tamilson B, Shaw S, Eccles J. (2024) The Experiences of Autistic Adults Who Were Previously Identified as Having BPD/EUPD: A Phenomenological Study. Autism, 29(2), 504-517.