The Age of Diagnosis: One Neurodivergent Person’s Perspective

The Age of Diagnosis is an exploration by neurologist and clinical neurophysiologist Suzanne O’Sullivan into the diagnosis culture in Western medicine. She explores a wide range of conditions, from Huntington’s disease to cancer, from Long COVID to global developmental delay. For the most part, O’Sullivan approaches her discussion of each condition with respect and empathy but, as Ciara Lee - an autistic individual with lived experience - reflects, when it comes to neurodivergence, respectful and inclusive language is paramount. However, even medical professionals are not infallible, and may inadvertently undermine certain communities...

"...diagnoses are often a requirement simply to access any support...a diagnosis is a literal lifeline"

Autism

Chapter 3 is about autism, a particularly contentious topic in the overdiagnosis debate. O’Sullivan presents the overdiagnosis of autism as fact, despite this being a contested and widely debated topic. The rate of autism diagnosis is increasing; that itself is undeniable. A UK population-based cohort study suggested there had been a 787% exponential increase in autism diagnoses between 1998 and 2018 (Russell et al., 2021). However, the greatest increases in diagnosis were observed in females and adults, indicating that autism may not be being overdiagnosed; rather, professionals may be improving at recognising it in underresearched groups. 

"neuroaffirmative terms were chosen by the neurodivergent community for the neurodivergent community"

As an autistic person myself, I took significant issue with the language used in this chapter. O’Sullivan repeatedly refers to autism as a ‘neurodevelopmental brain disorder’. Whilst this may be considered the correct clinical terminology to use among healthcare professionals, this book is available and promoted to a general audience, who may not realise that the terms used by O’Sullivan are not preferred by the majority of autistic people (Kenny et al., 2015). The cultural shift, driven by autism advocates, towards using neuroaffirmative language is becoming increasingly used in other scientific spaces (Pellicano and den Houting, 2021). This shift is crucial when discussing autistic people because these neuroaffirmative terms were chosen by the neurodivergent community for the neurodivergent community (Lei, Jones and Brosnan, 2021). Miles, an autistic person interviewed for the book, rejected her use of the word ‘disorder’, yet she informed him that she “expected to use the term… quite a lot” because “that is the official DSM terminology”. Rightfully, she reassures Miles that she would not directly refer to him as having a disorder, but I would argue doing so indirectly isn’t respectful either.

The Diagnostic and Statistical Manual of Mental Disorders contains classifications for almost every mental/cognitive condition or difference. Despite being produced by the American Psychiatric Association, it holds a great deal of international relevance. It is exactly this sort of attitude - rigid adherence to criticised and outdated medical terminology over patient preference - that has led many autistic people to lose faith in the NHS and special education system. This frustration is touched on earlier in the chapter by Poppy, another person with autism, stating, “there is a lot of harmful information that people in the NHS and special education system still hold about autism.” The continued use of non-inclusive language gives the impression that neurodivergent people were not considered a potential audience for this chapter. 

Poppy specifically mentions her dislike of the use of functioning labels. These are labels typically assigned to autistic people to describe what they are capable of, or their intellect. What shocked me most is that some of the people interviewed also seemed to use these labels. O’Sullivan explains that some autistic people reject the distinction because it “appears to diminish the level of difficulties faced by those said to be high functioning”. However, I would argue that this is an incredibly oversimplistic and one-sided view of these labels. Yes, the term ‘high functioning’ may imply that the autistic people in this category do not struggle. On the contrary, the term ‘low functioning’ may also imply the autistic people in this category are entirely incapable. People across the spectrum have issues with function labels for their own reasons. O’Sullivan acknowledges the controversy surrounding them yet continues to use them in her writing. This clearly demonstrates the one-sided tone of this chapter.

"Why is the focus not on the underfunding of support systems instead?"

Many in the autistic community also reject functioning labels due to their troubling history, including links to Hans Asperger, who was complicit in the euthanasia of autistic children during the Holocaust (Czech, 2018). Many prefer to use the terms ‘low’, ‘medium’, and ‘high support needs’, instead of the terms ‘mild’ and ‘severe’ and functioning labels. They are preferred for many reasons, including the shift to focusing on support rather than ‘deficits’. These labels also feel more dynamic to many, since the level of support required by one autistic individual can vary greatly throughout their life and different circumstances. 

People with so-called ‘mild’ autism appear to be blamed throughout this chapter. I feel as though we are depicted as stealing resources from the ‘more deserving’ individuals with higher support needs, cruelly flooding online spaces with positivity surrounding our ‘fake’ autism, and silencing the carers of people with high support needs. I do see a real issue with the autism advocates who claim, or imply, they speak for all autistic individuals, because realistically no one can. However, I take serious issue with the implication that those with lower support needs do not deserve access to support. Why is the focus not on the underfunding of support systems instead? 

It is undeniable that online spaces are dominated by autistic individuals with lower support needs, but I strongly believe this is simply because we have greater access to them. Most people use social media to platform their own lives. I don’t think it is fair to demonise individuals with lower support needs for doing just that. I do agree, however, that the wider media must do more to ensure there is adequate representation of people across the entire autism spectrum, not just displaying the ‘more palatable’ people with autism. This includes increasing representation of autistic people of colour, queer autistic people, autistic people of different ages, and more underrepresented backgrounds across the autistic spectrum.

ADHD 

Chapter 5 sees the focus return to neurodiversity through the example of ADHD; another hot topic in the overdiagnosis debate. Similarly to autism, the rate of ADHD diagnosis has rapidly increased (McKechnie et al., 2023). Once again, this is more significant in females and adults, further indicating that this may not be overdiagnosis. 

O’Sullivan claims that “ADHD, autism and depression are commonly referred to as neurodivergent conditions”. However, my own research suggests that depression is not considered to be a form of neurodivergence, but rather a mental health condition (Barkley, 2024). A key argument for this is that the onset of depression typically occurs in adolescents or people of older ages, whereas neurodivergent conditions, like autism, often become apparent during the early developmental period (Ozonoff et al., 2008). 

O’Sullivan questions whether ADHD should be considered its own condition, stating that genetic studies and brain imaging do not provide concrete evidence that it is distinct. O’Sullivan rehashes an argument from Chapter 3 that the inclusion of people with milder forms of ADHD in research will make a “single strong genetic association” harder to prove. Later in the chapter, she discusses different environmental factors which contribute to the onset of ADHD, including childhood abuse and alcohol consumption in utero, highlighting how these aspects are often overlooked in public discussions. O’Sullivan suggests that this may be due to the uncomfortable nature of discussing such sensitive subjects, as well as the attraction to the more innovative ‘brain chemistry’ theory. While it is important to highlight all factors contributing to the development of ADHD, it should not negate the importance of the support that can be provided by stimulant medications. After all, medication is a much more feasible option for those struggling with ADHD symptoms, today, than turning back the clock to mitigate these environmental factors. 

O’Sullivan is not the first professional to criticise the use of stimulant medication, and she won’t be the last. She raises concerns about the potential financial conflict of interest declared by 78% of the advisers who developed the ADHD category in the DSM-5 (Thomas, Mitchell and Batstra, 2013). She also points out that the true efficacy of these medications are questionable due to the lack of high quality or long-term studies. 

Potential conflict of interest is not O’Sullivan’s only criticism of the DSM. She criticises its lack of specificity in defining terms like ‘mild’, ‘moderate’, and ‘severe’, especially in the context of autism and ADHD. She also criticises how those who use the DSM may take it too literally. This is an important issue to highlight, but I would argue O’Sullivan’s insistence of using non-preferred terms, demonstrated in Chapter 3, indicates she may also be falling susceptible to the criticism of interpreting the manual too literally.

O’Sullivan goes on to discuss how, when the difficult process of shrinking DSM criteria is carried out, other diagnoses are created “so nobody will be without a diagnosis”. She does, however, neglect to reinforce the fact that diagnoses are often a requirement simply to access any support, which these struggling people really need. Neglecting this key piece of information may lead readers to infer that these people seek diagnoses only for the sake of having a label. 

The main body of this chapter is drawn to a close with the sentence, “When a medical problem is part of a person's identity, it becomes inescapable.” I find this statement utterly perplexing. O’Sullivan is clearly against the over-medicalisation of ADHD traits, yet she appears to consistently discuss it as if it is a disease, including the disappearance of a ‘recovery identity’. Promoting a return to the focus on ‘recovery’ implies that ADHD is a disease. ADHD is not a disease (Kendall et al., 2008). The use of the word ‘sufferers’ to refer to people with ADHD is also often rejected by those with ADHD. Many view it as an integral part of their identity or personality - not a disease they suffer from - despite the struggles people with ADHD face.

Conclusion

The increase in diagnosis of autism and ADHD overtime cannot be denied. Whether this truly is overdiagnosis, is still debated. It is very important that the distinction between what is objective fact and what is not is made clearer for the readers. Overdiagnosis is simply one theory for the rapid increase in diagnosis. Improved understanding of presentations of autism and ADHD in more underrepresented groups in research, such as females and adults, is another contributing factor. 

"Inclusive language is part of what separates researchers who work with us to better understand neurodivergence from researchers who merely reduce us to experimental subjects."

For many people, myself included, a diagnosis is a literal lifeline. It provides access to certain support pathways for those who need it, from disability benefits (Personal Independence Payment in the UK) and supported living, to extra time in exams, and support in education. On a less official level, it provides people with a community, where we don’t have to feel ‘othered’ and we can find people who better relate to our daily struggles. 

The objectivity required in scientific research can often create too much distance from the researchers and the real-world people that the topics they study affect. The way neurodivergent people are discussed can have a very real impact on neurodivergent people, even if comments have no ill intent or aren’t targeting individuals directly. Inclusive language is part of what separates researchers who work with us to better understand neurodivergence from researchers who merely reduce us to experimental subjects. Unlike some methods of fostering inclusion, implementing inclusive terms into your writing is entirely free. All it requires is a little extra time to do a bit of extra research into what terms the communities you are discussing prefer (a negligible fraction relative to the many hours O’Sullivan must have spent working on this book).

If researching and using inclusive language requires so little time or money, why didn’t O’Sullivan use it? From the sensitive and respectful nature with which O’Sullivan discusses her patients in other areas of the book, it would be difficult to believe the use of outdated terminology with harmful connotations was a deliberate decision. 

Regardless of intention, the repeated lack of inclusive language throughout these chapters begs the question: who were these chapters written for? 

Reference List

• Barkley, S. (2024). Is Depression Neurodivergent? [online] Psych Central. Available at: https://psychcentral.com/depression/is-depression-neurodivergent [Accessed 8 Jul. 2025].

• Czech, H. (2018). Hans Asperger, National Socialism, and ‘race hygiene’ in Nazi-era Vienna. Molecular Autism, [online] 9(1). doi:https://doi.org/10.1186/s13229-018-0208-6.

• Kendall, T., Taylor, E., Perez, A. and Taylor, C. (2008). Diagnosis and management of attention-deficit/hyperactivity disorder in children, young people, and adults: summary of NICE guidance. BMJ, [online] 337(sep24 1), pp.a1239–a1239. doi:https://doi.org/10.1136/bmj.a1239.

• Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C. and Pellicano, E. (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, [online] 20(4), pp.442–462. doi:https://doi.org/10.1177/1362361315588200.

• Lei, J., Jones, L. and Brosnan, M. (2021). Exploring an e-learning community’s response to the language and terminology use in autism from two massive open online courses on autism education and technology use. Autism, [online] 25(5), p.136236132098796. doi:https://doi.org/10.1177/1362361320987963.

• McKechnie, D.G.J., O’Nions, E., Dunsmuir, S. and Petersen, I. (2023). Attention-deficit Hyperactivity Disorder Diagnoses and Prescriptions in UK Primary care, 2000–2018: population-based Cohort Study. BJPsych Open, [online] 9(4), pp.1–10. doi:https://doi.org/10.1192/bjo.2023.512.

• Ozonoff, S., Heung, K., Byrd, R., Hansen, R. and Hertz-Picciotto, I. (2008). The onset of autism: patterns of symptom emergence in the first years of life. Autism Research, [online] 1(6), pp.320–328. doi:https://doi.org/10.1002/aur.53.

• Pellicano, E. and den Houting, J. (2021). Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry, [online] 63(4), pp.381–396. doi:https://doi.org/10.1111/jcpp.13534.

• Russell, G., Stapley, S., Newlove‐Delgado, T., Salmon, A., White, R., Warren, F., Pearson, A. and Ford, T. (2021). Time trends in autism diagnosis over 20 years: a UK population‐based cohort study. Journal of Child Psychology and Psychiatry, [online] 63(6), pp.674–682. doi:https://doi.org/10.1111/jcpp.13505.

• Thomas, R., Mitchell, G.K. and Batstra, L. (2013). Attention-deficit/hyperactivity disorder: are we helping or harming? BMJ, [online] 347(nov05 1), pp.f6172–f6172. doi:https://doi.org/10.1136/bmj.f6172.

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This article was written by Ciara Lee and edited by Rebecca Pope, with graphics produced by Ginevra Sperandio. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.