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.
The neurodiversity movement has gained enough of a foothold now that businesses are willing to use its language (within shareholder-acceptable parameters), 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. All of this is good for business without really having to do anything that genuinely addresses the grievances of the neurodivergent.
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 is 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, but 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. 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 strong possibility the person is sharing their issues for recognition and solidarity instead. Offering advice in this context will only 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. 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 myriad 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. 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. This ironically causes an attachment to pain and suffering because the things we know feel familiar and comfortable. In addition, it is not uncommon for humans to 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.
However, it doesn’t stop there. Pain shapes us. It trains us. And we end up in a relationship with it. If our pain defines us, we might not know who we are without it. Pain then becomes a necessity to 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, 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 the embrace of goth culture, enjoying vampire-themed stories, celebrating Halloween, or coping with anxiety by watching horror movies.
Ironically, thoughts of death then help the person to live.
The only spheres within society that address the relationship a person has with their pain and how pain or death has shaped coping mechanisms and cultural affiliations are within therapy and the entertainment industry. These are not topics welcomed in schools and workplaces, which means schools and workplaces will never understand the collective pain of the people within their institutions and the pain behind the causes they champion. One could argue that these are not the places for such topics to be addressed, but if that is the case then these institutions should not hold up the neurodivergent with one hand while silencing them with the other.
The neurodivergent actually present a challenge to workplaces and schools because these institutions constantly center their business plans around the hypothetical model of a normal employee or student and then attempt to force everyone into a distribution curve with normal at the center. They now have a scale for good and bad and metrics that can be used to measure the person’s progress or regression. The neurodiverse are incredibly good at resisting standardization. Instinctually, rules and regulations that have been designed to conform with a particular view of order will be flouted immediately by the preference of needing to accomplish goals their own way. The neurodivergent care intimately about process and what they need to do to reach a certain endpoint. Therefore, if you are an institution that oversees the neurodivergent, attempting to standardize process will not meet with success.
Taking care of people is not profitable. Understanding people is not easy. Hypothetical normality benefits no one.
So far the neurodiversity movement has been rock for self-discovery and validation. Let us all keep our eye on meaningful change.