By Helen Edgar, Autistic Realms
This blog grew out of a conversation on LinkedIn in April 2026 with Kay Louise Aldred from Neurodiverse Connection and Joanna Grace from The Sensory Projects, and it is very much part of an ongoing conversation between the three of us. Kay asked a question that I haven’t been able to stop thinking about:
“What if, instead of behavioural plans, we built relational ecosystems — where needs were met before behaviours needed managing? Where people weren’t reduced to risks, triggers and responses, but seen as humans worthy of time, care, and dignity?”
I have been sitting with this question for most of my working life, first as a teacher in SEND settings, where I spent many years with children with profound and multiple learning disabilities (PMLD), and now through my writing, advocacy and consultancy work. I wanted to take some time to think it through properly here, because I feel there is a real danger that when we talk about relational ecosystems, some of the people who need them most are still left at the edges.
Who Are We Imagining?
When I picture a relational ecosystem, I picture spaces built on trust, care, dignity and connection. But I have been asking myself who I am actually imagining inside those spaces. If, even without realising it, we are picturing people who can tell us what they need in words, who can sit in a co-production meeting designed around neurotypical ways of communicating, or who can choose from a list of options they already understand, then I don’t think we have reached the people at the furthest margins yet, and that is where Kay’s question really matters.
I am thinking of the children, young people and adults I have known with profound and multiple learning disabilities, whose communication is mostly sensory, embodied, rhythmic and slow. I am thinking of non-speaking people, people with degenerative and life-limiting conditions, and people who are deafblind and also have intellectual or learning disabilities. In my experience they are very often left on the edges of conversations about neurodiversity and relational care, when really they should be at the heart of them. If we can’t find ways to meet the needs of the most profoundly disabled and marginalised people in our communities, then I don’t believe we are truly meeting everyone’s needs.
Five Blind Spots and the Neuronormative Paradigm
In her Neurodiverse Connection blog, Kay names five blind spots in Positive Behaviour Support (PBS) and Applied Behaviour Analysis (ABA) (Aldred, 2025). She says they are not consent-based, they are built on power imbalances, they occupy and control the body, and they focus only on outward behaviour that can be observed. The fifth, and the one that has stayed with me most, is that they are not relational, because love is missing.
As I read Kay’s blog, I kept thinking about the children I used to teach. When I look at these blind spots through the lives of children with PMLD, non-speaking people and families facing lots of overlapping inequalities, they feel even more urgent. I have come to see all five as coming from the same place, which I call the neuronormative paradigm: the set of beliefs and systems that decide what counts as a ‘proper’ person, ‘proper’ communication and a life worth supporting.
Blind Spot 1: Not Consent-Based
We can’t gather consent from a child with PMLD who doesn’t use conventional language by handing over a form or asking a question out loud. It has to be noticed in their body, in a shift in muscle tone, a turn towards or away from something, a change in their breathing, or a kind of stillness or restlessness that can tell you a great deal before any words could.
For that kind of consent to happen, a child needs to feel safe, and that safety is something we create together through co-regulation. It needs a practitioner who is regulated enough to be really present, in an environment where there is no rush, no demand and no agenda except being alongside the child. I have seen plans written within 72 hours of a crisis admission, under pressure to meet audit targets, and in that situation there is simply no time, no space and no relationship yet from which anyone could read a child’s consent in a meaningful way.
Families can be shut out of consent too. If a parent hasn’t been offered an interpreter, if letters arrive in English they can’t easily read, or if meetings are full of professional language, it becomes almost impossible for them to genuinely agree to anything. Kay describes this as data collection dressed as collaboration (Aldred, 2025), and I think that is exactly right. Being in the room isn’t the same as being able to take part.
For people with PMLD, I feel consent has to be relational, embodied and ongoing, and it takes a lot of time. It grows slowly, through people being consistently and attentively present, which is something most of our systems just aren’t set up or funded to support.
Blind Spot 2: Built-In Power Imbalances
PBS and ABA are built around an expert model, where professionals assess, decide and put plans in place, and the person being supported becomes the object of all that expertise. Success tends to be measured by how closely someone meets the expectations that professionals have set. I don’t think this is usually about individual practitioners getting things wrong; the imbalance is built into how these approaches work.
For people with PMLD the imbalance is even greater, because they rely on other people to interpret and speak for them. If that interpreting happens inside a framework that values compliance and professional certainty more than relationships and humility, it is the child or adult at the centre who pays the price.
Families feel this too. I have worked alongside families dealing with poverty, language barriers and their own health needs who were at a disadvantage in planning meetings, review panels and tribunals before they had even walked through the door. When the only paperwork that counts is in inaccessible English, and a parent who couldn’t get to a meeting is written down as ‘not engaging’ without anyone asking why the system failed to include them, power isn’t being shared at all.
Sharing power would mean seeing families as the experts on their own child, holding professional knowledge more lightly as one perspective among many, and building systems that can listen to what people communicate through their bodies, their rhythms and their presence, as well as what fits neatly into a written plan.
Blind Spot 3: Occupying the Body
For me this is one of the most serious blind spots, and it is the one I feel most strongly about when I think about the children I have taught.
Many children with PMLD regulate themselves through their senses, by rocking, vocalising, watching light, exploring textures, or seeking out particular pressures and sounds. When those behaviours are stopped or ‘extinguished’, the child loses one of the main ways they have of feeling safe in the world. In behaviourist approaches the body often becomes something to correct, rather than a source of knowledge about the person. Movements that are full of meaning, which might be telling us about comfort, discomfort, joy, withdrawal or overwhelm, get redirected because they don’t look the way attention, calm or communication is ‘supposed’ to look.
I worry about what this teaches children over time: that their own body’s signals can’t be trusted, that staying safe means holding everything in, and that compliance is the price of being cared for.
For a deafblind young person, touch and the other senses may be the main way the world reaches them and the main way they can reach back. Controlling that goes so far beyond overreach that I think it can take away part of who they are. Joanna Grace (2018) describes people with PMLD as sensory beings, people whose experience of the world, and the meaning they find in it, is mostly sensory. When we take control of that sensory body, I feel we are silencing the person.
Blind Spot 4: Focusing Only on Observable Behaviour
Behaviourist frameworks can only really work with what can be seen and measured, and so much of what matters to a person can’t be charted. The anxiety that builds up before a so-called ‘challenging behaviour’, the pain or tiredness that changes how someone engages today, or the grief a child with a degenerative condition and their family may be carrying, none of it shows up in the data.
For people with PMLD, whose communication is mostly embodied, inner feelings can already be hard for others to read unless they know the person well and have spent a lot of time with them. If the framework itself has no way of talking about inner experience, that whole inner life can disappear from view.
Kay makes the point that someone who stops showing distress hasn’t necessarily stopped feeling it (Aldred, 2025). They may have learned that showing it leads to being redirected, restrained or ignored, so what we end up with is compliance, which is very different from wellbeing.
I have known children who become quieter, rather than louder, when they are in real pain. A framework that only looks at outward behaviour could easily read that stillness as progress, and that worries me as a genuine safeguarding risk.
I believe good support for people with PMLD has to start with curiosity about what someone is experiencing, rather than with measuring what they do. The double empathy problem (Milton, 2012) helps me here, because it reminds us that misunderstandings happen in the space between people who make sense of the world very differently, rather than being a problem inside the person we are supporting. So I try to ask what a person might be experiencing, and how we are meeting that, rather than simply what they are doing.
Blind Spot 5: Not Relational, and the Absence of Love
Kay is at her most honest here, and I love that she names it so clearly: love is the foundation of genuine care, and it shouldn’t be treated as a risk or as something unprofessional.
PBS plans are often stuck on walls, read by lots of different staff, and written so they can be passed quickly from one person to the next. In many ways that feels like the opposite of a relationship, because it treats a person as a list of behaviours that whoever is on shift can manage, rather than as someone who is known, and who can only really be supported by people who are present, attuned and genuinely care about them.
When I think about children with degenerative conditions, whose lives may be shorter, whose needs can change faster than any plan, and who will never fit neatly into a progress framework, love in practice looks like a practitioner who stays. It looks like someone who keeps showing up on the days when there is nothing measurable to record, when the child is in pain or exhausted and last week’s engagement seems to have gone, and who understands that withdrawing today is a form of communication rather than going backwards, because the body is always telling us something, even when it is quiet. It looks like someone who treats those small, slow moments as real and important, because they are.
Fox and Macpherson (2015) describe this kind of presence as an embodied ethic of encounter. I find that idea really helpful, because it is a way of being with someone rather than a technique, and it can’t be written into a plan, audited or handed between staff without something being lost. It needs time, continuity and really knowing the person, and, I don’t think there is a better word for it, love.
Melanie Nind and Joanna Grace (2025) argue that the emotional wellbeing of people with profound intellectual disabilities is built through ethical, responsive relationships, and I think this is the heart of the work. It is exactly what gets lost when love is seen as unprofessional, when relationships are treated as a risk, and when the plan becomes more important than the person.
Naming the Paradigm
I don’t believe these blind spots exist because practitioners don’t care, as most of the people I have worked with care very deeply. They come from something bigger and more structural. In my piece on the neuronormative paradigm (Edgar, 2025), building on Nick Walker’s (2021) writing about the pathology paradigm and neuronormativity, I described how this paradigm shapes the social, cultural and political systems that keep the idea of ‘normal’ in place. It decides what counts as communication, what counts as progress and whose lives are worth organising support around. PBS and ABA are some of its most visible examples, but the roots go much deeper, which is why I think it matters so much that we name it.
When Inequalities Overlap
The neuronormative paradigm doesn’t work on its own. It overlaps with racism, classism, ableism and colonialism, and together these shape who is dismissed, who is believed and who is seen (Crenshaw, 1991; Edgar, 2025). Within it, people tend to be valued for how productive and conforming they are, and other ways of being and relating are pushed aside.
For families supporting a child with PMLD while also dealing with poverty, language barriers or their own health or neurodivergent needs, these overlaps are part of everyday life. I think of families who couldn’t read an assessment report because it was never offered in their first language, and who were then told at tribunal that they had ‘failed to engage’. I think of parents and carers who are Autistic themselves, or living with chronic illness, already carrying so much, and expected to fight their way through systems that assume endless energy and persistence. I think of children with degenerative conditions in settings that don’t have the specialist knowledge they need, and that can’t keep the staff who were just beginning to build a relationship with them because the pay and conditions aren’t good enough. And I think of deafblind young people whose access to sensory-rich, attuned specialist support is constantly limited by underfunding, and by the assumption that what works for other people will work for them too.
These are the real experiences of many families I have worked with over the years. They need much more than a kinder version of the system we already have, and I think that is what Kay’s question is really reaching for. A relational ecosystem that doesn’t take these overlapping inequalities seriously would only ever be a better-funded version of the same thing.
Joanna Grace and Sensory Being
I want to bring Joanna’s voice into this too, as someone I have been thinking alongside for a long time and now work with directly.
In her article A Dangerous Assumption?, Joanna (Grace, 2019) questions a belief that is often seen as respectful and positive: that children with PMLD are really children facing profound and multiple barriers to learning, with full cognitive capacity hidden behind their physical impairments. She argues that presuming this for every child can actually be ableist, because it can waste precious time, give families false hope and hide the child as they really are. Writing as someone who is neurodivergent herself, she says: “People assuming I am like them does me harm.” She also writes that “a narrative of aiming high does these children no favours”, and calls instead for expectations that are centred on each child and on what is meaningful to them.
I found this challenging in a really good way, because it asks us to pay attention to who a child actually is, and to what they are already doing in their own way, rather than to who we assume or hope they might be.
It links closely with the double empathy problem (Milton, 2012), the idea that communication breaks down between people with different sensory and meaning-making worlds, rather than being a problem located in one person. Shaw et al. (2024) have described a ‘triple empathy problem’ in healthcare, where the gap between Autistic patients and clinicians is widened by professional and institutional barriers, and I think families of people with PMLD often experience something very similar. To me, the difficulty lies in the way we are looking at the child.
Joanna’s idea of sensory being, being fully present in an unfolding sensory moment (Grace, 2018), described something I recognised straight away from my years in the classroom. For some children the world is mostly felt through touch, light, movement, warmth and the sound of a familiar voice. I remember noticing a change in muscle tension, a head turning towards a scent, eyes slowly following a light, or a hand reaching out to touch something familiar. All of these are communication, and they can be incredibly rich and layered if we take the time to learn how to receive them.
Melanie Nind and Joanna Grace (2025) also show that the emotional wellbeing of people with profound intellectual disabilities can’t simply be measured on a scale and reported at a review meeting. It grows through ethical, responsive relationships built on presence, patience and co-regulation, and the wellbeing of the child and the practitioner develop together, in the space between them. That is why I don’t see co-regulation as a technique we apply to someone. It is something we share, through our bodies and nervous systems, and it shapes what becomes possible between us.
This is what Joanna and I are now building on together. We are developing a framework inspired by Autistic SPACE and designed specifically with people with PMLD in mind. The original Autistic SPACE framework (Doherty et al., 2023) was created by Dr Mary Doherty, Dr Sue McCowan and Dr Sebastian Shaw for Autistic people in healthcare settings, and is built around Sensory needs, Predictability, Acceptance, Communication and Empathy. It has since been developed for education too (McGoldrick et al., 2025). What I love about it is that it starts with the person rather than the system. Our work takes that starting point into the sensory, relational and embodied world of people with PMLD, putting presence before performance, experience before conformity, and being with someone before doing things to them.
From Interpreting to Attuning
Fox and Macpherson’s (2015) embodied ethic of encounter is the idea that holds a lot of this together for me, and I think it is worth slowing down to think about what it looks like in practice, because it is much easier to agree with than to actually live.
I remember a little boy I taught, who I will call T. T didn’t use words, and he didn’t make eye contact in the way that classrooms usually expect as a sign of attention. He rocked, he vocalised, he reached for certain textures, and he went very still whenever he heard particular music. Within a behavioural framework, the first instinct was to redirect his rocking, shape his attention and write a plan around the behaviours that could be charted and reviewed.
But when I stopped trying to interpret T, stopped trying to work out what his movements ‘meant’ in terms I already understood, and instead just stayed alongside him, I started to notice so much that I had missed before. He was still in a different way in different light. He reached out more when he was warm. His sounds changed when someone he felt comfortable with came into the room. And there was one piece of music that did more than calm him; it seemed to gather him together, so that he was more present and more turned towards the world. None of this was in his plan, but all of it was real. T had been communicating all along, and I had simply been looking in the wrong direction.
For me, that is what attuning means. It is about being open, humble and willing to be taught by another person on their terms. Fox and Macpherson (2015) describe this kind of ethics as coming from the relational moment itself, from being alongside, noticing and staying present to whatever unfolds, rather than from outcomes decided in advance. It doesn’t depend on someone being easy to read, speaking fluently, complying or making eye contact in neurotypical ways. It depends on love, which brings me right back to what Kay said was missing.
Joanna Grace and her colleagues (Grace et al., 2024) write about moving from knowing about people with profound intellectual and multiple disabilities to being with them, from collecting data to building relationships, and from looking for certainty to being more comfortable with not knowing and with trust. Simmons and Watson (2014), in their phenomenological study of a boy called Sam who had PMLD, showed that consciousness and agency were very much present for Sam, expressed through his body, through his relationships and through the slow rhythms of a life lived mostly in sensory experience. Sam was being heard by the people who were willing to tune in to how he communicated.
I think this is where relational practice and neurodiversity justice meet, and it is somewhere behaviourist frameworks really struggle to reach.
Belonging Before Learning
One idea I keep coming back to in all of my work is that belonging needs to come before learning. I don’t see it as a warm-up that gets cut short when time is tight; for me it is the work itself.
The wellbeing of practitioners and children is closely connected, and the calm, attunement and safety we want to offer children can only come from staff who are well supported themselves and not running on empty (Nind & Grace, 2025). Systems that exhaust and undervalue the people doing this work also make it harder for children with PMLD to flourish, so I think the way we support staff is an ethical question as well as a practical one.
Trust, presence, patience and building relationships sit right at the centre of good practice. As I wrote in my earlier blog on relational practice with children with PMLD (Edgar, 2026), however complex someone’s needs are, every interaction is a chance to nurture their dignity and their sense of belonging.
Building Something Different Together
What connects all of this for me is a refusal to accept that the system we have now is the best we can do, and a refusal to treat people with PMLD, non-speaking people, deafblind people and families facing lots of overlapping disadvantage as too complicated, or too far from the centre, to be part of the neurodiversity conversation.
The neurodiversity paradigm, in its genuine sense rather than a watered-down version that leaves existing power structures in place (Chapman, 2023), tells us that all neurological variation is part of human diversity. That includes the people whose ways of being are hardest for our current systems to read, and who have the least power to make their own case.
Holding on to that means doing the slow, relational and embodied work of meeting people on their terms, which may not be our own. It means noticing when we are measuring connection by how much it looks like what we already know, and gently resisting that. And it means creating environments and ways of working that start with each person, with their sensory world, their rhythms and the ways they reach out towards life, rather than starting with a plan.
I don’t think there is one ‘normal’ that any of us should be measured against. There are only the patterns we have learned to value, and I hope that with more attention, more slowness, more love and more care in how we meet each other, we can begin to build something different together. This conversation with Kay and Joanna is still unfolding, and I will keep sharing where it takes us.
👉 Read next: Beyond “Complex Needs”: Neuro-Affirming, Relational Practice with Children with PMLD
👉 Read next: Why PBS is Harmful for Autistic and Neurodivergent Young People
👉 Read next: Intensive Interaction as Neuro-Affirming Relational Practice
👉 Read next: The Neuronormative Paradigm: Naming the Systems That Harm
References
Aldred, K. L. (2025, April 1). Five PBS and ABA blind spots: Once you see it, you can’t unsee it. Neurodiverse Connection. https://ndconnection.co.uk/blog/pbs-aba-blind-spots
Chapman, R. (2023). Empire of normality: Neurodiversity and capitalism. Pluto Press.
Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299.
Doherty, M., McCowan, S., & Shaw, S. C. K. (2023). Autistic SPACE: A novel framework for meeting the needs of autistic people in healthcare settings. British Journal of Hospital Medicine, 84(4), 1–9. https://doi.org/10.12968/hmed.2023.0006
Edgar, H. (2025, November 15). The neuronormative paradigm: Naming the systems that harm. More Realms. https://morerealms.com/the-neuronormative-paradigm-naming-the-systems-that-harm/
Edgar, H. (2026, February 1). Beyond “complex needs”: Neuro-affirming, relational practice with children with profound and multiple learning disabilities. Autistic Realms. https://autisticrealms.com/beyond-complex-needs-neuro-affirming-relational-practice-with-children-with-profound-and-multiple-learning-disabilities/
Fox, A., & Macpherson, H. (2015). Inclusive arts practice and research: A critical manifesto. Routledge.
Grace, J. (2018). Sensory-being for sensory beings: Creating entrancing sensory experiences. Routledge.
Grace, J. (2019, January 19). A dangerous assumption? SEN Magazine. https://senmagazine.co.uk/content/specific-needs/pmld/20657/a-dangerous-assumption/
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Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities. Autonomous Press.
