Lost in Translation: The Social Language Theory of Neurodivergence (part 2 of 2)

The second part of a two part series. The first is here.

While speaking different languages makes relationships difficult, invalidation makes relationships impossible.

The med/psych system is losing or failing most neurodivergent people. This is the most common theme I am hearing from patients, parents, teachers, and therapists alike. And it’s not just that we are “falling through the cracks” in the system or being neglected, though those are valid concerns. The bigger concern is that the med/psych system is actively harming many neurodivergent people by forcing cultural assimilation.

The current system of treating mental health is designed to force one culture to act like another. Psychiatry in its modern form is still deeply influenced by a history of Nazi eugenics, sterilization laws, and incarceration under the guise of treatment.

The pathology paradigm creates separate groups — the ingroup and the outsiders, the normal and the abnormal, the socially acceptable and the socially unacceptable. Treatments and interventions are then sold to the outgroup to “help” them become like the ingroup. Those who still cannot conform even with “help” are assigned to yet a third group — the treatment resistant, the lost causes, the broken people.

A study in 2019 found that psychiatric diagnosis is scientifically meaningless because there is too much subjectivity in diagnosis and not enough understanding of trauma. And when we look beyond simple accuracy and also consider impact, the failure of diagnostic labels becomes clear. Diagnostic labels as they are currently given are worse than useless, they are all too frequently harmful.

SELF-IMAGE, DEPRESSION, AND SHUTDOWN

When we receive diagnosis we are typically also indoctrinated into a system of meaning that says we are disordered, diseased, doomed, or broken. What does it do to a person’s self esteem to internalize the idea that their neurology is broken?

Our neurology determines the way we move our bodies, how we feel, and how we think. It is the foundation of our sense of self and our understanding of others. What does it do to a person’s daily motivation and functionality to assume that the foundation of their being is flawed? What is the impact on the body of us believing this?

The story of being broken is not a safe story for us to hold. Such intense negativity about Who We Are commonly triggers fear and panic in the short term and chronic freeze or shutdown states, depression, and hopelessness in the long term. Holding a belief that we neurocept as threatening also causes cognitive dissonance and can be perceived as a rupture in the attachment relationship with Self.

To give credit where credit is due, I first began to consider the deep impact of diagnosis after reading about Gary Sharpe’s experience of being diagnosed with Parkinson’s (a type of neurodivergence). In this article, he clearly articulates “just how much the ‘negativity narrative’ and lack of provision of helpful information at diagnosis may still be impacting our condition today.”

SOCIAL REJECTION, ABUSE, AND PTSD

Since society generally listens to neurotypical doctors regarding what traits and behaviors are good/bad, normal/abnormal, right/wrong, etc. neurodivergents are systematically marginalized in every day life. We understandably get the impression that we don’t belong here, that there isn’t space for us in this society.

Parents, teachers, employers, and intimate partners constantly invalidate us, confident that their way of seeing things is the only way, assured that plenty of doctors and scientists agree with them. Many of us become suicidal because we acutely feel this lack of belonging.

Dr. Rebecca Shaw says, “We must be careful of the message we are sending autistic people, that their true self is not acceptable in society. We must work with the autistic community to build a more compassionate society that is more accepting of neurodiversity, so autistic people feel that they belong.’

This is true for all neurodivergent people, not just autistics. The constant messaging that our true self is not acceptable is experienced as emotional and psychological abuse. The pressure to conform to neurotpyical culture also puts us at a higher risk for coercion and abusive relationships.

When our natural way of being in the world is repeatedly threatened, we develop a form of complex PTSD, and become socially avoidant to protect ourselves. This is so common that I do not know a single neurodivergent person who does not have complex PTSD. Isolation becomes our norm, but we want to belong just as much as anyone else.

MISTREATMENT, RE-TRAUMATIZATION, AND FORCED TREATMENT

The pathology paradigm gaslights us about our natural nervous system responses. Our sensitivity and other unique traits are labeled as dysfunctional. Even in trauma-informed clinics, our evolutionarily adaptive responses to stressors are sometimes labeled “faulty neuroception.” Suppression of neurodivergent traits is marketed as regulation strategies. Common interventions promise to limit how much our stress responses impact others rather than support any actual healing.

Shame from therapists and doctors fuels anxiety and shutdown. I already spoke about the shame that often accompanies stigmatizing diagnosis, but there are many other topics on which neurodivergent people encounter shaming approaches from professionals, particularly — disability, support needs, finances, sexuality, spirituality, relationship styles, learning styles, and communication styles. Professionals (whether they are neurotypical or highly masking neurodivergents) frequently do not realize when they are enforcing a normative cultural ideal.

Another way mistreatment happens is through the way medications are prescribed. I am all for psych medications as disability support. The problem is how meds are given. Trial and error testing of psych meds is disruptive and sometimes dangerous for sensitive neurodivergents. Fortunately they are shifting to more targeted approaches informed by genetic testing, but it should still be understood that trying a new medicine is a big deal to a neurodivergent nervous system. Neurodivergent people are more sensitive to side effects and to shifts in neurochemisty in general, but our reports about how our meds are affecting us are too often invalidated by our prescribing doctors.

Retraumatization with professionals happens in many ways. A common one that can happen for anyone of any neurotype is when a therapist pushes someone to confront traumatic memories before they are ready to. For neurodivergent people, there is also a kind of re-traumatization that can happen that is a recreation or reenactment of core wounding.

The power dynamic with a therapist can replicate the power dynamic we experience with neurotypical culture. If our therapist pushes us towards the neurotypical cultural ideal, we experience rejection of our true selves and suppression of authentic expression. This reinforces our external locus of control. We may respond to that relational harm with survival-motivated performativity, codependent patterns, and fawning or appeasement.

The most extreme way neurodivergent people are harmed by the mental health system is through forcible medication and restraint or imprisonment for displaying distress symptoms. For expressing our distress in ways that are authentic to our divergent selves, we are punished with the complete removal of our autonomy. I have heard countless stories now from neurodivergent people who have been harmed by the system in this way. Their consent was violated, their human rights were revoked, and their dignity was cast aside by medical professionals, all in the name of helping them, while no thought was given to what caused their distress to begin with.

The neurodiversity paradigm recognizes our different languages and seeks to understand miscommunications instead of pathologizing them.

Here are 7 key ways that neurodivergence can be supported, accepted, and embraced —

1. Encourage cross-cultural communication . People who are translators or bridges between neurotypical and neurodivergent culture have a very valuable skill set right now.

“We believe the most effective interventions will involve teaching both autistic and non-autistic people to recognize each other’s social signals, rather than insisting that autistics behave like non-autistics do,” says Vikram Jaswal, an associate professor of psychology.

“We need to be proactive. We need to get in autistic specialists, who work alongside other professionals such as Occupational Therapists and Speech & Language Therapists, and help decode what’s happening. Translators, allies, able to see and sense the sensory difficulties that teams would otherwise be guessing at.” — Anne Memot

2. Develop ND spaces and communities. We are social beings, we just socialize differently. We need spaces where we can experience divergent socialization, connection, and belonging.

“For the longest time, to give a minor example, I thought that my not being able to hear in noisy environments was a personal failing, because I wasn’t trying hard enough, or didn’t care about other people enough to listen properly — because everyone else around me seemed to be able to hear, and no one seemed to understand my problem. It was only by getting to know other autistic people that I learnt that sensory and multi-channel processing difficulties is a real thing, that it wasn’t about me being bad or wrong.” — Sony Hallet reflecting on Autscape, a conference in the UK by autistics for autistics.

3. Learn the neurodiversity paradigm perspective of mental health diagnosis. We see the entries in the DSM as neurotypes and adaptive stress responses, not as illnesses or disorders. (This does not negate our suffering or our need for support.) It’s important for professionals especially to learn how to differentiate between three big categories — genetic neurodivergence, stress and trauma syndromes, and co-occurring conditions like fibromyalgia, EDS, IBS, and other disabilities — so that they can accurately target the conditions that they truly can help us with.

“We need to stop the idea that distress is ‘real autism’.” — Anne Memmot

4. Acknowledge disabilities. Medications, therapies, and sensory aids can alleviate distress caused by processing differences. We can also alleviate distress by increasing accommodations and accessibility in our families, communities, and public spaces and by decreasing pressure to cultural preferences. Augmentative and Alternative Communication technology should be offered to every nonspeaker. We can teach parents how to create adaptive home environments for autistic children. We can also teach educators how to create adaptive classroom environments and reduce bullying. Neurotypicals can learn to understand our nonverbal communication, especially stress signals. We need to improve access to diagnosis while insurance companies are still a gatekeeper to care. Self-identification should eventually allow us access to the same accommodations as formal diagnosis.

5. Create adaptive employment situations. Of course, we do not need to be productive to be valuable as people, but Neurodivergent people can be fantastic employees in the right setting. Our individual needs in workspaces vary, but overall we thrive when we have a safe setting to work in a field that we are passionate about. Many of us like to work from home. Some of us thrive with routine and repetitive tasks. Some of us thrive with more flexibility. We have unique talents to offer the world — if people could remove the neurotypical cultural expectations from the workplace it would be easier to share them.

6. Stop equating value with productivity. Every person has something to contribute. That contribution may or may not be able to be monetized. The culture of western capitalism, of measuring success by individual monetary gain is fused with neurotypical culture. Many of us are artists, philosophers, inventors, or deep thinkers. Many of us need life-long support from others for daily tasks. Many of us simply cannot produce at the level that society demands, and that’s okay — our bodies did not evolve to keep up with that pace. We long for a life of loving communities living in harmony with nature, where we can finally stop having to erase ourselves just to feel like we belong.

7. Build care networks. Because the system is failing us in so many ways, many of us need income support, assistance with activities of daily living, or just a person to talk to who gets it. Our most likely source of support may actually be other disabled people. I recently read the book Care Work: Dreaming Disability Justice by activist and theorist Leah Lakshmi Piepzna-Samarasinha and was inspired to learn the rich history of disabled people supporting each other.

“Their vision is one of community-based resource sharing practices and fair trade emotional economies, consciously organized by BIPOC, queer, crip and working-class communities as well as undocumented and houseless communities.” — David Loner and Maggie Rosenau

Janae Elisabeth, aka Trauma Geek, is an autistic researcher and neurodiversity advocate who believes free neuroscience education will change the world. For additional information, check out the other articles in The Polyvagal Neurodiversity Blog Project . For infographics, click here. This work is made possible by donations and by Patreon supporters.