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

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