Chapter Three: Brains, bodies and consent

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PART I.

Chapter Three

Brains, bodies and consent

Consent is for every brain

This book would not exist without an understanding of how divergent brains and bodies engage with the world.

It is my divergent self that felt invaded, overwhelmed and controlled – and I now understand why. And it is my son’s divergent self that piloted us towards living and learning differently. It is my daughter’s divergent self that sent me down a path of mothering in ways that often feel foreign, like a new territory I’m hesitantly exploring.

As psychologist and author Naomi Fisher writes in her book Changing our Minds, neurodivergent children are often the canaries in the coalmine – they call out the unfairness and messed-up-ness everybody else just assumes is normal. I don’t think my understanding of consent would be complete without an awareness of how needed consent-based spaces and relationships are for people who diverge from what is considered the norm.

We would not be having these conversations if it weren’t for the writing, mobilizing and advocating of Indigenous, Black and brown and other people of colour, disabled people, poor and immigrant women, the LGBTQ community, the feminist movement and the fat liberation community.

Every group’s experience of living on the margins of what is considered “normal”, every group’s experience of diverging from the norm, has been so crucial to my understanding of consent. And I don’t think all humans would be able to benefit from ideas of autonomy and consent without marginalised humans sharing their heightened experiences of feeling emotionally and physically violated. For many people, consent is not just an interesting concept, it’s an urgent necessity.

This chapter has a focus on neurodiversity because I can speak personally to that, but really, it is about human diversity in all its many forms.

But isn’t everyone divergent in some way?

Yes and no.

Human diversity is the norm. Humanity is diverse. But not every single one of us is divergent.

We have built systems that have normalised and specifically adapted to further the advancement of white, straight, non-disabled, wealthy, neuronormative and preferably male adult people. While there is no normal or typical body-mind, some people have an easier time existing in the specific society they inhabit because their dominant position in that society enables them to live with ease.

So yes, we are all different; but no, we are not all divergent because some of us have neuronormative brains, and normative bodies: the ways they exist fit more closely to society’s expectations.

The Neurodiversity movement, and before it other movements for justice and liberation, push us to see that biodiversity is normal and should be celebrated, rather than stigmatised and pathologised.

The Neurodiversity paradigm

The Neurodiversity paradigm actively offers an alternative to the medical model, or Pathology Paradigm, of disability and neurodiversity.

The Pathology Paradigm collects a variety of observable symptoms and gives them a name. ADHD is not in itself “a thing,” according to this model, but rather a collection of symptoms, a bunch of boxes ticked. The Neurodiversity Paradigm, on the other hand, is borrowed from the disability community, and specifically from the disability justice movement, and sees neurodiversity as the natural variation in all human brains. (The term was coined by sociologist Judy Singer, although she did not invent neurodiversity as a concept, because it simply exists!).

This model, as opposed to the medical model of diagnoses that see divergent brains as something to fix, as deficit-based, or as brains that are not working the way they “should”, sees divergent brains as part of the wide spectrum of all expressions of human neurology.

In this context, neurotypicality or neuronormativity is not actually the norm, or even something that inherently exists. Author Nick Walker calls neuronormativity “the performance of the local dominant culture’s current prevailing images of how a so-called “normal” person with a so-called “normal mind” thinks and looks and behaves.”

In other words, normativity (of all kinds, not just neurological!) is a performance that is dependent on context and culture. There is no one, universal “normal” brain or body, but there are ways we have been taught to perform “normality” that differ throughout the world.

The Neurodiversity movement sees neurodivergence, a term coined by autism rights activitst Kassiane Asasumasu, as all the many ways that brains have evolved to be different – it is not a deficit, but a variation. The reason so many of us with different body-brains struggle is that much of our Euro-American, minority world societies have been built to accommodate and work for one kind of body-brain (a neuronormative, thin, straight, non-disabled, white, male one), even though in actual fact, most brains are probably divergent, to some extent. Naomi Fisher explains that neurological difference is seen in a majority of the population, according to several studies.

I love how the discourse of neurodiversity is fundamentally one of inclusivity, and even more than that, it is one of re-building a world that works for every one of us, no matter what sort of brain or body you are born in. It is not one of binaries or hierarchies – but a narrative about existing as who we are, with everybody else also doing the same, and in the process creating environments and societies by all of us, for all of us.

We need to see it through an intersectional lens

The ways we show up with our unique body-brains is highly dependent on the way all our various identities intersect. Intersectionality is a concept created by civil rights advocate and scholar Kimberlé Crenshaw, and it is so crucial to understanding power and consent.

Crenshaw wrote about the way that the power and privilege (or lack thereof) we hold as individuals is dependent on the ways that our identities overlap within systems of oppression. In her work, she referred specifically to the ways gender and race intersect.

I believe that all conversations about human body-brain diversity need to be looked at through the lens of Crenshaw’s intersectionality. The way I show up as a disabled person is going to be highly influenced by the fact I am a white woman with a degree of socio-economic privilege. My experiences of being a woman, a neurodivergent person, a white person, a thin person, will never be separate. I cannot zero in on one thing because it’s all connected, and I am connected to everybody else.

I would love to see a conversation about how neurodivergence happens across other identity lines. It is worrying to me that much of the discourse has been dominated by white voices, and that I have seen it sometimes turn into another way to perpetuate white supremacy, another way to police us and divide us.

In an article on Medium about the principles of Neurodiversity Affirming Practice, author Sonny Jane Wise writes, “Intersectionality is the first principle for a reason — it’s the most important principle because all of our work, all of our approaches, all of therapies needs to recognise intersectionality.”

Divergent Mind?

Claiming a divergent mind makes everything make sense, for me. All the stray bits of the web are not flailing in the wind, but combined delicately together. I’m no longer a combination of seemingly “weird” and unrelated traits, or a combination of broken pieces that don’t actually belong together, but someone that makes sense in their whole, beautiful entirety.

All of the sides of myself that seemed unrelated and I struggled to explain – the extreme sensitivity, sensory difficulties, anxiety, shyness, a baffling freeze response, “contrarianism” as my husband likes to call it, and so much more – make sense.

The tidiness also gives me pause. Is it really so defined and easy? The reality is that it’s probably not, AND also that I don’t know. I may know this in an intuitive sense, but I don’t know it for a fact, and both things matter.

I am forever pushing back on “the danger of a single story” as writer Chimananda Ngozi Adichie warned us.

Doubt feels good to me, and certainty feels like a wall. Just because something makes sense to me and is helpful for me, doesn’t mean it is THE truth for everybody else, or even the truth for me. I will always, always hold this close as a way to live.

I am wary of falling into essentialist explanations of neurodivergence. I am also wary of claiming a label that is fundamentally, a colonial one.

Author Ayesha Kahn writes about the ND/NT binary on her Substack Cosmic Anarchy, “It may have helped you but it isn’t the only approach and the way it is often used upholds the oppressive structures we’re trying to dismantle. Liberation is not just freedom to choose labels but for many of us, it is not having to take on any labels at all and existing in complexities.”

I am wary of putting myself forward in the world by way of my more marginalised identities, because I fundamentally feel that I am a Western white person with quite a bit of privilege and I feel an enormous sense of responsibility. My sense of responsibility over-shadows any discrimination or oppression I could potentially claim.

And while I recognise that labels serve people, that they allow us to find community and seek support that is sometimes invaluable and even life-saving, I also see that labels can feel all sorts of ways for people. Fundamentally, I support everyone’s autonomy to adopt a label, or not.

Both are valid.

And personally, I am still digging and exploring and living in the grey areas.

And so are my children. They, too, get to grow into the ways they define themselves, or choose not to. That, too, is part of consent-based practice for me: supporting them to understand and form their own narrative of who they are.

A Pervasive Drive for Autonomy

We live in Bangkok, Thailand, part of the time and navigating the city’s narrow streets, that often have no sidewalks and no discernible traffic rules, has been interesting. Leo insists he must walk alone, and refuses to hold my hand. Once, I tried to emphasise how dangerous it would be if one of the many motorbikes ran into him and he replied, “Well it would be that person’s fault, not mine!”

I feel that his statement at least partially explains a pervasive drive for autonomy: it is so strong in my child, that he cannot see how putting himself in harm’s way could possibly be his responsibility. His need for agency often overrides his instincts for self-preservation.

Autonomy matters for all children, of course, but it is particularly strong in some children and people. Not all of them are neurodivergent, but some are.

PDA stands for Pathological Demand Avoidance and is a profile on the autism spectrum. I do not know if my child is PDA, and honestly, I believe it is up to him to adopt this label, and any other identity, if and when he chooses to.

But while parenting, I’ve found that learning about autistic and ADHD kids, and more specifically about PDA kids, has helped me understand my children, and myself. I have sometimes found comfort, community, and compassion behind the labels.

But also, I am not married to them. And there are some aspects of the discourse that trouble me.

PDA’s most obvious characteristics are a strong drive for autonomy that can often result in avoiding anything that feels like a demand, even everyday demands such as getting dressed in the morning, brushing teeth, going to school, and so on. PDAers also share other characteristics with other autistic people, such as particular sensory experiences. This profile is currently not widely recognised in diagnostic manuals and the work of adult PDAers has been really crucial in understanding PDA. (I’ve linked some of the resources I have benefited from, below).

PDAers struggle more than the average child to stay regulated when they perceive a lack of autonomy or an imbalance in power dynamics. I have thought a lot about where this struggle comes from, and the truth is we don’t really have enough studies or evidence to know this. Adult PDAers talk about the way their nervous system is disabled by the demands of life, and I tend to place the onus on our capitalist, oppressive systems rather than on us as individual people.

I mention the systems, because most adult PDAers who share their lived experience, live in the Western world. And I think this is crucial: we do not know whether this profile would be quite as relevant or disabling in other environments. We do not fully know the effect that our Western economic and social systems have on our brains and bodies. As always, I am reluctant to universalise what is so far a very Western experience.

We do not hold the truth about neurodivergence and neurodiversity, because there isn’t just one truth.

And I also worry about the individualistic bent that a lot of the discourse on neurodivergent takes, especially in online spaces. There is a focus on diagnosing ourselves and seeking accommodations for ourselves and our children (which in itself is fine!), but I don’t see an equal amount of focus on actually tackling our disabling systems to begin with.

This feels extremely Western and individualistic, concerned more with how we are individually going to thrive rather than how to ensure that everybody thrives.

Disability & consent

Before we realised what my son truly needed, we were just regular parents doing parenting in a more or less gentle way. And yet the three of us felt like our toddler was holding us hostage with his sudden mood swings, unreasonable demands, explosiveness and general “making everything hell” vibes.

This is not to judge him: he was doing what he needed to do to preserve his autonomy and to feel safe. We just didn’t realise it, and my own experience of this was in fact one of hypervigilance, walking on eggshells, and profound anxiety. Parenting my neurodivergent child, before I knew about PDA, was excruciating.

Naomi Fisher explains that demand-avoidance, or a drive for autonomy, is a common trait for many children. She writes, “When our background stress levels are too high, we cope less well with day-to-day stressors. Our window of tolerance shrinks. Each demand can start to feel painful, like being poked, even if it’s something as commonplace as replying to a text message or making a meal.”

I feel these words in my bones. I see and value those who educate on PDA and what it looks and feels like, and I also recognize that like with most things, there is a continuum of demand avoidance and we are all somewhere on it.

My son has described to me the same feelings I felt as a child: of paralysis when a demand felt like too much, of the piling up of demands, a bit like Naomi Fisher describes above, and how that tips him over the edge. I can see how his pervasive drive for autonomy is stronger than perhaps that of an average child. And how at times, it overrides his other instincts of self-preservation.

For years, I struggled with the fact that the overwhelming feeling I remembered from childhood was loss of control. I literally felt like people were staging a takeover, and succeeding, most of the time. I felt powerless to somehow fight them off. I felt invaded.

When I mentioned this to my sister, her perception was entirely different. She recognised there were controlling aspects, but she never felt forced or coerced or invaded to the extent I did. It was an all-body experience for me. I often felt like a deer in the headlights: frozen in place, not able to move even though I wanted to run.

Freeze & Fawn

Erica Scott and Marcia Baczynski write about the way some people have a fawn response as a survival mechanism in situations when they feel unsafe. This can be why so many neurodivergent children have a tough time saying no, and feeling safe enough to practice consent freely. Often we focus on the “explosive” kids, or the ones who have a “flight” reaction, but we don’t speak often enough about the other two ways nervous systems respond: freeze and fawn.

People-pleasing can often be a fawn response. Sometimes this is as a result of past trauma, and sometimes this is a divergent brain’s way of staying safe. Creating spaces where it feels safe for our children to consent is so crucial when we look at it from this perspective.

Similarly, a freeze response can make it impossible for neurodivergent children to truly say yes, no or maybe from a place of autonomy and authenticity, if their nervous system becomes so overwhelmed by a perceived threat that they essentially freeze.

This is why consent-based spaces and understanding how to co-create them, is so important, and why consent is simply not as straightforward as we think.

If we create a relationship our child doesn’t feel they need to defend themselves from, they might not feel that unbounded autonomy is a survival need, that consent is a form of preservation. With time, and an increased sense that we honour who they are, and love them because of it, they might see it more as a way to connect, to build a culture, to create shared meaning.

This has happened to me. I am not a different person: I’m still very much driven by autonomy.

But I know how to find safety and regulation, and I have learned to channel that drive to set myself free in ways that are relational and collective, rather than solely focused on my own untethering. I don’t know if this is the case for every child and human, but I’m willing to try.

Is resistance neurodivergent?

I like to think of PDAers having a powerful intuition around when things are morally wrong or unjust, and of our demand avoidance being what autistic psychologist and author Emma Svanberg calls our “inner rebel.”

This resonates with me so deeply. I feel that call within me – the call to speak up, to push back, to resist, to do the opposite. I’m not suggesting that all people who rebel are autistic or PDAers, or even demand avoidant. But I’m fascinated by how many people who take the road less travelled in our highly capitalistic world, are in fact owners of a divergent brain.

And, I also recognize that many people have no choice but to rebel and resist, that resistance to oppression is inherently part of the human spirit and so often people’s only choice, and to quote Svanberg, that “isn’t there a need for ‘defiance’ right now? Don’t we, the citizens of the world, have quite a lot to push against?”

As I edit this chapter, we are five months in to Israel’s latest war on Gaza. I see the drive for freedom and the resilience of Palestinian people, and I fundamentally believe it should put a lot of our hyper-individualistic focus on our own bodies and brains into perspective. It should serve to remind us that some of the traits we pathologise in Western societies, are in fact profoundly human. And it reminds me also that some of the traits that we pathologise are potentially a result of the world we inhabit: a relatively safe, privileged, reality.

Pathologising traits also serves to depoliticise them. They become a neutral part of our brain wiring, rather than a completely reasonable and deeply political reaction to injustice, war, and the systems we exist under.

Some questions I have asked myself over and other again these past few months, as I watch bombs shattering homes, families ripped apart, babies stuck under rubble and unimaginable suffering all livestreamed for the comfort of our private viewing: if it was us running from violence and destruction, would our potential neurodivergence matter? In other words, and I hesitate to write this out, would my child still be autistic or PDA or ADHD or whatever if we were fighting for our very survival? Would it even matter, if the point of our entire existence and that of our people was to resist?

I don’t have an answer, but I think the question itself is sobering. We are hyper-focused on how to care for and parent our children, while other people’s children are hungry, traumatized, wounded and grieving lost friends and family.

While I recognize that we aren’t playing at who is more or less oppressed, and I recognise we can be all in on raising our children AND care about all people, I can’t help but wonder whether some of why we cannot stretch our capacity is because we do not have to in order to survive.

I do not write these words lightly. I know they are likely to land in all sorts of ways, some of which may feel uncomfortable. I am not the arbiter of what is true for you, of course. But I do wish to un-narrow the way we see neurodivergence, because of the way it intersects with our understanding and practice of autonomy, consent and coercion.

Consent is for every body

Neurological differences are not only a brain thing, they are a body thing. Often neurodivergence overlaps or co-occurs with disability. But also, our bodies are what we show up in. So many of the ways our brains are wired actually show up as embodied.

Our body is the first thing people see – it is our outward presentation of who we are. It tells people about many (but not all) of the identities we may hold. I’m really interested in looking at brain diversity and body diversity together, because I don’t believe the two are separate. In her book, Your body is not an apology, Sonya Renée Taylor speaks to the idea that all of the forms of discrimination, domination and oppression, are “created by humans’ struggle to make peace with the body.” She writes about the way “radical self-love” is the way we create a more just world for all bodies.

As neurodivergent people we often speak about loving our unique, divergent brains, as if they were somehow separate to our unique bodies. We may all be neurodivergent but we live in different bodies, sometimes in what might be socially perceived as divergent bodies (diverging from a socially-constructed, dominant norm), and the ways we exist in relationship to one another will shift and be influenced by the bodies we live in. There is no way around this.

And in a way, loving our body is how we also begin to love our brains.

Ok but what does this have to do with consent?

Consent is fundamentally about preserving out physical, psychological, mental, and emotional integrity. It is about wholeness of our whole selves, and how we honour it.

In order to practice that kind of radical self-love of our children’s entire self, of our own, and of other people’s, we need to talk about difference, divergence and variation. We need to talk about neurodiversity, and about differences in bodies, in a morally neutral way. And we need to speak more about why we consider some bodies and brains good, and others bad.

Also, consent is embodied

I stay pretty constant around the “why” of consent-based-ness now. I understand it intellectually, and I feel it untuitively. I choose consent and non-coercion again and again, every day, intentionally. I know why I do it and I also hold it within my body – it is an embodied sense of consent-based-ness, which is much harder to shift than an intellectual understanding of it.

A healthy dose of doubt is always a good thing, and I do keep questioning things, which sometimes means I lose faith. This used to mean I’d fall back into old patterns of trying to control my children, only to then feel ashamed for doing it. I am not perfect now, by any means. My children see me mess up and apologise regularly. I have a lot of work to do. They know it as much as I do. We see each other and our humanity, daily. We don’t look away. But my doubts are much more specific now – they aren’t really self-doubt, as much as constructive questioning of all things.

I think this comes from having worked on an embodied sense of what feels like the right thing.

Consent is a practice.

Consent-based-ness is not performative. It is not the outward appearance of respect, and the inner turmoil of still holding our children to our own arbitrary expectations.

It is choosing trust over “I know best.” Always. Even when we perhaps think we know best, or even when we do in fact know best. Because we may know best for us, but never as an absolute.

It is being called to rethink my deepest assumptions about what children want and need, who children are, and what children are capable of.

It represents stepping outside of the mainstream model of coercion, manipulation and extraction, and going beyond ‘gentleness’ and looking at power and control.

It is building a genuine partnership that is rooted in respect, autonomy and collaboration.

It is living in a way that also preserves my own integrity.

And lastly, it’s about honouring my children’s own unique understanding of what their best interests are, and being in solidarity with the ways they choose to enact them.

It also goes beyond my children. For me, understanding how to create communities like this, is crucial to my work as a parent, home educator and human. And consent is a critical part of getting to know myself, getting my own needs met, and being respectful of other people and their needs. It is also something that has been systematically dismantled by the systems we operate within; patriarchy, white supremacy, ableism and adultism, have historically ignored and overridden consent.

A commitment to consent-based everything is a commitment to becoming aware of oppressive systems and how we can participate in dismantling them, or exist in spaces outside of them.

I’ve answered a lot of the what and the why of consent above, but there is one major obstacle that comes up again and again: we don’t believe children are able to consent, or should be allowed to consent, because we don’t see them as fully formed humans.

The next chapter is my response to that.

Thank you for reading!! Next up is Chapter Four: Children Can Consent.

You can find references for this chapter below.

Fran x

References:

Asasumasu, K. Foundations for Divergent Minds Youtube channel. Kasiane Asasumasu on Neurodivergent.

Baczynski, M. & Scott, E. (2022) Creating Consent Culture. Jessica Kingsley Publishers.

Crenshaw, K. (1989). “Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics.” University of Chicago Legal Forum. Vol 1989: Issue 1.

Fisher, N. (2022). Changing our Minds: How children can take control of their own learning. Robinson.

Kahn, A. (2022) “Yes, we’re all a little neurodivergent.”Cosmic Anarchy. Found here:

Yes, we're all a little neurodivergent

Ngozi Adichie, C. (2007) The danger of a single story. TedX talk found here: https://www.ted.com/talks/chimamanda_ngozi_adichie_the_danger_of_a_single_story?language=en

Svanverg, E. (2023) PDA. Musings on Autonomy. Un-normal. Found here:

PDA

Taylor, S.R. (2018). The body is not an apology. Berrett-Koehler Publishers.

Walker, N. (2021). Neuroqueer Heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities. Autonomous Press.

Wise, S.J. (2023). Neurodiversity Affirming Practice: Core Principles. Medium @livedexperienceeducator: https://medium.com/@livedexperienceeducator/neurodiversity-affirming-practice-core-principles-f2c6d70661af

Wise, S. J. (2023). We are all neurodiverse. Jessica Kingsley Publishers.

Some resources on PDA (these are only a few I have drawn from, happy to recommend more!):

PDA Society.

PDA North America

A different way to learn: neurodiversity and self-directed education by Naomi Fisher, and

Dr Naomi Fisher

Substack.

Marnina Kammersell

Substack and website.

Kristy Forbes’ work

The Family Experience of PDA by Eliza Fricker

Low Demand Parenting by Amanda Diekman