What is currently missing from the neurodiversity movement

There is a dark undercurrent within the booming neurodiversity and mental health market in general and that is a reluctance to accept that some people do not want to move away from their pain or they want to do it on their own terms. This essay intends to demonstrate how the messaging within the neurodiversity movement from publishers and advocates might not appeal to the neurodivergent, as it lacks any real attempt to understand and communicate their pain.

Two of the biggest book publishers that openly publish neurodivergent books, Jessica Kingsley and Neurodiversity Press are solely involved in positive narratives, stories of acceptance and overcoming, and guides to living as neurodivergent. The message, therefore, is about change and transition to an ideal created by other people. Adults, particularly those who were late diagnosed, will have spent time reflecting on pain and grievances experienced throughout their entire life (Lupindo et al., 2023). This is personal to them, these experiences have shaped who they have become, and so literature that is asking them to accept an ideal that was based on somebody else’s experience might not appeal to them; from a business perspective, this is isolating a key section of the market. However, negative narratives and aversive experiences might be of greater appeal because they do not claim there is something better and do not beggar the need to change – in other words, there is an honesty to them and they are more relatable. There is power in knowing that other people have had similar experiences, which leads to solidarity and community (think the ‘Me too’ movement).

The neurodiversity movement has gained enough of a foothold now that businesses that have historically been reluctant to recruit and promote the neurodiverse (Austin & Pisano, 2017) are now willing to use its language (Krzeminska et al., 2019), there is now a flourishing market for memoir and self-help from neurodiverse perspectives, and neurodiverse influencers (whether neurodiverse or not) can eke out a living. The neurodiversity dollar has become lucrative, which on the one hand means there is more neurodiversity messaging to more people, but on the other hand this type of messaging will have to be protected to assure profitability.

This means the common messaging is likely to remain the same. Stories about a person’s life struggle and how they overcame adversity will be extremely popular. Messages about perceptual differences between the neurodiverse and neurotypical can be played for both education and comedic effect. Days can be put aside to flaunt colored ribbons and donuts can be brought into the office. 5Ks can raise money for the cause. In fact, marketing is often intimately related to hope (MacInnis & Chun, 2007) All of this is good for business without really having to do anything that genuinely addresses the grievances of the neurodivergent (there is no attempt to understand or empathize with personal pain and no mention of plans to design a new business model to address neurodivergent ways of working).

As with all social movements, messaging about systemic change or requests to understand or acknowledge a person’s pain will not last long within popular messaging. These things cannot be marketed and will not result in an immediate profit, in fact they will cause an immediate loss. Systemic change to address the root cause of neurodiverse suffering would require new business models and ways of working that permit the neurodiverse to work in ways that assist them. Experiencing the pain of others through an empathic response is by its nature a willful act of feeling bad, which conflicts with the do-gooding nature of the cause. This means the neurodiversity movement runs the risk of being relegated to a banal industry that allows a handful of individuals to turn a profit.

The level of understanding and education required for legitimate change often proves too much and there is no money to be made in trying, and so we are left with the same sometimes humorous sometimes educational, but always censored and saccharine messaging.

This can be problematic if there is intent within the messaging to share advice, as what we tend to find is advice with no understanding. In the context of strangers meeting, and one person reading a brief description of the other’s issues, there is not enough information to then proceed with advice or a solution. Neurodivergent people have often stated time and time again that they feel misunderstood (Beck et al., 2024; Pavlopoulou et al., 2025; Banks et al., 2024) Without knowing a person or the series of events that led to the description of the problem, advice should not be forthcoming unless asked. There is a cost to offering advice when the topic is as personal as somebody’s life, and the cost is investing time and understanding on a 1:1 basis. If issues are shared by somebody for the first time, there is a strong possibility the person is looking for recognition and solidarity instead. Offering advice in this context could insult the intentions of the person sharing their issues.

If we do not want to feel the pain of others and we want to offer our advice with no understanding (things that are currently fostered by popular neurodiversity messaging), how can we ever really understand the pain of the neurodivergent?

Our willingness to understand the pain of others remains a crucial question within our collective morality. This is not a comfortable place to be. Depression and anxiety are contagious (Abdelhadi et al., 2025; Joiner & Katz, 1999; Huang et al., 2024). One reason that we should all take a moment to celebrate good therapists is that they have opened themselves up to endure the pain of others despite the mental and emotional challenge. Advice and help come with a toll; if you want to provide them, you need to put the work and time in first, in much the same way that parents of young children are loathe to take advice from people who have no children. However, the answer is simple. Instead of offering advice, offer understanding and solidarity.

The pain of others can be remarkably complex.

If a person has endured a life of pain and suffering, in all the myriads of ways that those things are possible, it will have shaped who they are, how they think, and how they respond to others in the present (Schwaller & Fitzgerald, 2014). When observing pain and suffering in others there can be a well-intentioned drive to try to help and try to lessen their experience of these negative emotions. If the person is experiencing immediate threats to their survival and are openly pleading for help, a response is perhaps obvious – help them to get away from danger. But if there is no immediate threat but they have a long and complicated history of negative experience, a lot more time and effort is required to get to know the person (and only if they want to get to know you).

For the person who has endured a life of pain and suffering, even if they are trying to minimize those experiences in the present, so much of what they know about life and living has been learned through their painful experience. A study in the UK that used data collected over 40 years found that those diagnosed with an internalizing disorder (anxiety or depression) in adolescence had an odds ratio of 9.5 times more likely to have a mental disorder in adulthood compared to those adolescents with no internalizing disorder (Colman et al., 2007). Pain stays with them and becomes a part of their pathology.

This can ironically cause a repetition of pain and suffering because those things form a strong part of what the person knows about themselves (Bowins, 2010). In addition, it is not uncommon for humans when developing a familiarity with their circumstances to create schemas, plans for enduring adversity and coping mechanisms, to function during such times. This means that if pain and suffering are common, the schemas and ways of dealing with life will have been heavily informed by the pain and suffering (Riso et al., 2006).

However, it doesn’t stop there. Pain shapes us. It trains us. And we end up in a relationship with it (we use attention and emotion to modulate our pain: Coghill et al., 1999). If our pain defines us, it is conceivable that we might not know who we are without it. Pain then becomes instrumental in how we see and maintain ourselves. This phenomenon has been well documented throughout history when exploring sadomasochism. The necessity for pain is achieved either by inflicting or receiving pain with others or inflicting it on oneself. The relationship a person has with pain should be of concern to any therapist, especially if there is the possibility of violence against others or themselves, but a person’s relationship to their pain need not be tied to violence.

A life with (at least) periodic depression and questions of self-worth are also likely to encourage questions about individual existence (as the person sees themselves an ill-fit for the world) and thoughts of death. These thoughts do not have to be planning suicide or suicidal ideation, but thought experiments to discover their worth in life. Thoughts of death quickly become metaphor for absence of friends, family, or meaningful relationships; it can also symbolize the person’s failure (to themselves) of trying to “fit in” or function in society. As these thoughts persist, thoughts about death could become a key part of coping mechanisms. For example, the neurodivergent often experience sensory overload (Strömberg et al., 2022), which can lead to burnout, and the extended need for sensory deprivation and solitude. To retreat to a quiet and dark place to rest mirrors the act of dying; living, by contrast, can be seen as the toleration of sensory input. If death has already been a common thought, pairing it with the need for rest due to its similarities will start to welcome more of these death-related thoughts. Resting from burnout is strongly welcomed by the neurodivergent and so thoughts of death become associated with good feeling. This does not necessarily mean they want to die or commit homicidal behavior, rather there is the interest in the macabre, such as enjoying vampire-themed stories, celebrating Halloween, or coping with anxiety by watching horror movies. There is also the embrace of goth culture, by the neurodivergent (Whalen, 2024) and goth metanarratives explore themes of loss, absence, and marginalization, and a common notion within goth culture is to romanticize the idea of becoming a supernatural being isolated from a fearful society, which treats them as a monster (van Elferen & Weinstock, 2015). Whether it is intentional or coincidental, goth culture, then, takes the negative experiences of the neurodivergent and thoughts about death and funnels them into a community with group acceptance.

Ironically, thoughts of death then help the person to live.

Understanding and explaining this complexity about neurodiversity is currently not addressed in neurodivergent literature or books and is certainly not acknowledged in company messaging.  

Neurodivergent people deserve better from groups claiming to represent them. Adult neurodivergent fiction that showcased neurodivergent thought processes through narrative would both educate and entertain. Detailed explanations of coping mechanisms to deal with a difficult world would be enlightening, even if it did make readers squeamish. Yes, there are success stories, but neurodiversity through poor mental health and no support systems also destroys people. These messages are just as important.

Publishers and neurodiversity advocates that claim to care about the people they represent need to make greater efforts to get to know, understand, and communicate the pain of the neurodiverse. If they did this, the personal depth of the neurodivergent would help to give them a more diverse catalogue, expand their market, and help the neurodivergent to feel better represented.   

References

Abdelhadi, I. A., Mohammed, O. A., Babikir, S. K., Bedri, E. A. M. A., & Abdelhadi, A. A. (2025). Is mental health contagious? Depression, anxiety, stress and burnout among Mental health professionals in Sudan. BMC psychiatry, 25(1), 148.

Austin, R. D., & Pisano, G. P. (2017). Neurodiversity as a competitive advantage. Harvard Business Review, 95(3), 96-103.

Banks, A. L., Mainess, K. J., Javaherian, H., & Natsuaki, M. N. (2024). “Very Misunderstood”: Self-Perceived Social Communication Experiences of Autistic Young Adults. Youth, 4(4), 1628-1646.

Bowins, B. (2010). Repetitive maladaptive behavior: Beyond repetition compulsion. The American Journal of Psychoanalysis, 70(3), 282-298.

Beck, K. B., MacKenzie, K. T., Kumar, T., Breitenfeldt, K. E., Chang, J. C., Conner, C. M., ... & Mazefsky, C. A. (2024). “The world’s really not set up for the neurodivergent person”: Understanding emotion dysregulation from the perspective of autistic adults. Autism in Adulthood.

Coghill, R. C., Sang, C. N., Maisog, J. M., & Iadarola, M. J. (1999). Pain intensity processing within the human brain: a bilateral, distributed mechanism. Journal of neurophysiology, 82(4), 1934-1943.

Colman, I., Wadsworth, M. E., Croudace, T. J., & Jones, P. B. (2007). Forty-year psychiatric outcomes following assessment for internalizing disorder in adolescence. American Journal of Psychiatry, 164(1), 126-133.

Huang, C. W., Hu, T., Zheng, H., Wu, Y. L., Li, J. M., Wang, Y. M., ... & Jiang, C. L. (2024). Contagion of depression: a double-edged sword. Translational Psychiatry, 14(1), 396.

Joiner Jr, T. E., & Katz, J. (1999). Contagion of depressive symptoms and mood: Meta-analytic review and explanations from cognitive, behavioral, and interpersonal viewpoints. Clinical psychology: Science and practice, 6(2), 149.

Krzeminska, A., Austin, R. D., Bruyère, S. M., & Hedley, D. (2019). The advantages and challenges of neurodiversity employment in organizations. Journal of Management & Organization, 25(4), 453-463.

Lupindo, B. M., Maw, A., & Shabalala, N. (2023). Late diagnosis of autism: Exploring experiences of males diagnosed with autism in adulthood. Current Psychology, 42(28), 24181-24197.

MacInnis, D. J., & Chun, H. E. (2007). Understanding hope and its implications for consumer behavior: I hope, therefore I consume. Foundations and Trends® in Marketing, 1(2), 97-189.

Pavlopoulou, G., Chandler, S., Lukito, S., Kakoulidou, M., Jackson, I., Ly, E., ... & Wilson, A. (2025). Upsetting experiences in the lives of neurodivergent young people: A qualitative analysis of accounts of adolescents diagnosed with attention‐deficit/hyperactivity disorder and/or autism. JCPP Advances, e70038.

Riso, L. P., Froman, S. E., Raouf, M., Gable, P., Maddux, R. E., Turini-Santorelli, N., ... & Cherry, M. (2006). The long-term stability of early maladaptive schemas. Cognitive Therapy and Research, 30(4), 515-529.

Schwaller, F., & Fitzgerald, M. (2014). The consequences of pain in early life: Injury‐induced plasticity in developing pain pathways. European journal of neuroscience, 39(3), 344-352.

Strömberg, M., Liman, L., Bang, P., & Igelström, K. (2022). Experiences of sensory overload and communication barriers by autistic adults in health care settings. Autism in Adulthood, 4(1), 66-75.

Van Elferen, I., & Weinstock, J. A. (2015). Goth music: From sound to subculture. Routledge.

Whalen, K. M. (2024). Goth subculture, neurodivergence, and the dark power of changeling narratives. In Heavy Metal and Disability (pp. 162-178). Intellect.

Seeking a mental health diagnosis in your 40s

To be diagnosed later in life with something that has been with you since childhood is a strange feeling.

I was always the kid with asthma, meaning I had bright and shiny inhalers in my pocket. Other kids would recognize that that was my difference, but I got used to it, and assumed as a young child that was the only medical condition that would ever define me. The novelty of having inhalers soon wore off, however, and I was left annoyed that all having asthma really meant was putting restrictions on me that other kids didn’t have to endure. Many years later, because I’m a special kind of idiot, I was determined to smoke to reclaim some autonomy and put my finger up at the world for always telling me what to do.

The teens also saw the arrival of a new nemesis.

Cystic acne. I never knew the name for this at the time, only the mortifying feeling of waking up with massive painful swellings on my face or chest and knowing that it would draw attention to me in public spaces and I was going to be stuck with these swellings for at least a few weeks (which is about a year in teenager time).

Fortunately, as I stepped boldly but naively into adulthood, the severity of my asthma decreased, and the acne, slowly but surely decided not to come back. But there was something else there that refused to budge.

Depression, anxiety, and meltdowns from being sensorily overwhelmed had been there since my early teens and seemed to be getting worse. I naturally assumed they were a part of adolescence and it never occurred to me that the difficulties I was having in school were due to (at least one) mental health challenge. The extreme fatigue, the problems I had focusing, the need for solitude and sensory deprivation, and how rooms full of other students and teachers always felt too much. I came to believe that I just sucked at life and it didn’t matter how hard I tried, things just never seemed to get better.

My first year in college was one of the lowest of my life.

I would find myself awake at 3am in such agony at my own existence. Nothing I seemed to do mattered and it seemed to be well beyond my own ability to fix myself. It might have been a sign of the times, but it never even occurred to me that I might have mental health issues. I hated what I was studying, I hated that I could not seem to connect with anyone, I hated myself for feeling the suffocating depression that I was convinced clung to me like a wet blanket precisely because I was too useless to rescue myself.

Eventually, my experiences at college did come to my aid.

I took it upon myself to change subjects and I fell in love with the act of learning. There is always something to learn and learning itself is an act of transition, giving you more and more access to conceptual worlds that previously would have remained boring and unengaging. I decided to learn to write and moved into a more essay-oriented field, and I now got to read about so many amazing people that influenced the world in unique and captivating ways. Finally, learning and seeking new experiences picked me up and gave me a fighting chance.

Fast forward through a history of many jobs, neglected responsibilities, a lengthened stay in academia, and an accumulating arsenal of coping mechanisms and I arrived in my forties, committed to a diagnostic evaluation for ADHD.

Anyone who has been through this will appreciate the irony of this assessment. You are asked about your ability to sit still, focus, and complete lengthy but boring administrative tasks, while it is incumbent upon you to sit still, focus, and complete a lengthy but boring administrative task. Indeed, the required activity and not the actual assessment itself feels like the actual test.

Still, the task was completed, I was interviewed by a charming psychologist, and a week later a report confirmed what I had perhaps known all along. Yet there is a peace in no longer needing to doubt myself. The “off button” I crave for overactive thoughts could at least now be applied to understanding this facet of my mental health. The explanatory power of a mental health diagnosis is also profound. I have numerous memories of difficult or painful times, which I had not been able to understand. There are times I could not understand why I felt so bad or why certain people had become inexplicably annoyed or angry with me.

Before I was diagnosed, it was common for me to use certain metaphors to describe my experience. For example, when I felt overwhelmed, it felt like my mind had been unrolled and stuck on a spike. Or after a busy meeting with quite a few attendants, it felt like my mind was a smoldering ash heap. The acts of reading and writing have always been soothing for me, because working through sentences makes me feel like my mind is being stitched back together. This next metaphor is a bit labored, but nonetheless true – joining a meeting, asserting myself into the conversation and recruiting my voice to contribute feels like running from the back of an aircraft hangar while I’m tethered to a piece of bungee cord trying to get out through the main door to join the storm outside.

If you have not been diagnosed, and describing your life using these kinds of metaphors has been common, it may very well be something to pursue.

Under the light of my diagnosis, these memories have now started to lose their sting and even though moving forward is not always easy, I at least can do it with greater understanding.

If you’d like to sign up for more writing, you can do so below. Always free. E-mail addresses will always remain confidential.