Helen Edgar, Autistic Realms
A personal reflection.
From the age of sixteen, I volunteered in hospices and respite centres for those with profound and multiple learning disabilities, some also with life-limiting conditions and some with degenerative conditions. I eventually completed my teacher training and worked for twenty years, specialising in supporting children and young people with Profound and Multiple Learning Disabilities (PMLD) and Profound and Multiple Intellectual Disabilities (PMID).
Every relationship I had the honour of building with my students matters deeply to me. Some of those people were only with us for a short while — like Jasmine in the video below. I often think about how others are doing and where they are now, but I know they are very likely not in the same online spaces as me. They are likely not reading debates about Intensive Interaction or contributing to discussions about what neuro-affirming practice should look like. For many people with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities, that kind of participation simply is not possible, not because they have nothing to say, but because most of the world is still not really listening to them, (with the small exception of some amazing research being done by practitioners who are working with those with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities as researchers in their own way, e.g., Grace, Nind, de Haas and Hope).
The world has not yet learned to listen in the ways it needs to really enable meaningful contributions without people attributing their own privileges or biases. There is always the risk that our own voices will take over, overriding consent and autonomy, and I am aware of the privilege and issues of even writing this. However, that is why I think the lived experience of those who care and support those with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities matters; the practitioners, parents, carers, and friends and family members of the most vulnerable members of our society. We need to make sure they are not left out of these discussions and the wider implications of policies and practices that are entirely focused on meeting their needs in the best possible ways.
The video above, shared by Jasmine’s mum, read by staff at National Star, is a beautiful example of what it means to really be with someone. I didn’t know Jasmine, but I know that this shows real love, attunement, responsiveness, and a genuine acceptance of Jasmine as a person. Jasmine could blink yes and no, make choices, and express herself. Not every child I worked with reached that stage of being able to discriminate and communicate in that way — but we still had relationships, we still had conversations.
The goal of Intensive Interaction is not to eventually be able to communicate in normative ways and make informed choices, as some people may never be able to do so no matter how many support systems are in place, but we need to be able to relate to them and understand their way of communicating in the moment, for them to feel listened to, valued and have a meaningful relationship with someone on their terms. Anything else that arises through those relationships, such as potentially realising they may benefit from something like Eye-Gaze technology or other forms of AAC, is a wonderful progression, but it is not at the heart of why Intensive Interaction is valuable.
From the outside, it might have looked like I was simply copying the person I was with, but you have to be there with someone to feel what’s actually happening. The intensity of Intensive Interaction is not placed on the person with less power, those with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities, but rather on the practitioner or carer.
I was always trying to be fully attentive and present. Over time, I became aware of what was a reflex response, what was incidental, what carried intention, and what, for some, could become more intentional. Something shifts when you are really with someone; it might be the blink of an eye, a change in breathing, a subtle shift in muscle tone. I worked with one child who communicated through the way he moved his feet, another who would trace their fingers along my arm, and that became our shared language. Each person deserves to be with someone who can tune in and meet them where they are and communicate in their own language, however that may look.
Woven through all of this is the issue of consent: knowing when to respond, when to stay still, and when to withdraw. For people with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities who cannot give verbal assent, a “no” may not always manifest as a simple turning away; it may be something quite different, such as a change in breathing, as shown in Jasmine’s video. It may be a stilling of the body or an increase in the movement of a body part, or mouth or eye movement.
Intensive Interaction, when practised well, does not assume consent is absent or already given, but rather that it forms slowly and carefully between two people over time. You can’t write these things up easily, you can’t really fully capture this in a video either. It is impossible to capture empirical data about feelings in this way; we have to trust in the meaning of the relationships we have and the shared knowledge of the carers and practitioners who know best when creating support with the person they are with.
Some people are raising concerns about the intent of Intensive Interaction as an affirming practice in its own right. The worry, I think, stems from locating meaning-making in the relational moment — in the practitioner’s reading of a breath, a shift in tone, a movement — and from the interpretive power resting with the professional or parent/carer/friend or family member, a power that is not neutral. There are genuine questions about motor difference and apraxia, about whether movements read as meaningful responsiveness may be involuntary, and about whether a relational approach, however warm, can become a ceiling rather than a foundation, but when you really spend quality time with someone you know these things, it becomes an instinct, something you feel and that arises between you.
Intensive Interaction is more than neuro-affirming; it is humanity-affirming (Grace, 2026). It is literally meeting someone where they are and tuning in to who they are and how they are. I think a huge issue comes from perhaps some professionals using this relational approach for evidence-based practice – e.g., to meet curriculum targets and neuronormative therapy goals, but that isn’t intensive interaction.
Approaches that require people to conform to neuronormative communication styles — performing eye contact, suppressing natural movement, masking authentic expression — carry a well-documented cost. Research shows that this kind of pressure contributes to masking, exhaustion, minority stress, and poorer long-term mental health outcomes (Hull et al., 2017; Bottema-Beutel et al., 2023). Intensive Interaction does the opposite of all of this; it does not require conformity, does not target any behaviour for reduction, and does not ask anyone to perform competence. It actively reduces these pressures and meets people where they are, so meaningful relationships and communication can develop on their own terms.
The critique of Intensive Interaction misses something essential about what Intensive Interaction actually is when practised well. It is not a technique applied to a passive recipient; it is not there as a framework to be used and twisted to meet normative-focused curriculum or therapy targets. It is a relational philosophy — one grounded in the belief that communication already exists in every human being, waiting to be met rather than trained.
For people with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities, communication is inherently sensory and bodily — rooted in internal states such as arousal, tension, pain, or emotional shifts that may be expressed through the most subtle physiological changes. A shift in breathing, a softening or bracing of muscle tone, a reaching toward or a turning away, is all communication. It needs and deserves to be noticed and honoured. For someone who may not clearly feel or reliably express their own internal signals, being genuinely read by someone who knows them well enough to notice is profoundly important to their safety and wellbeing and the quality of life they are able to have.
We all deserve meaningful relationships, and whether you call it Intensive Interaction or simply being truly human with another person. Communicating in the way that has been framed as “Intensive Interaction” for the purposes of training and writing about this is beyond valuable. Intensive Interaction is not a technique for producing communication outcomes, but a way of being with people that really honours their full humanity.
As Dr Damian Milton (2014) has said, “with its model of mutual respect, engagement with a person’s own interests, and attentiveness to Autistic cognition and sensory experience”, he finds “Intensive Interaction the most favourable of current approaches” — and while Milton was writing primarily in relation to Autistic people, all people with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities are neurodivergent – their neurology and ways of being diverge from the dominant social norms and the relational principles he identifies apply across that overlap.
Expanding on this idea, Milton’s Double Empathy Problem (2012) reminds us that communicative breakdown arises from difference, not deficit. Intensive Interaction takes this seriously; it does not ask the person with Profound and Multiple Learning Disabilities and Profound Intellectual Disabilities to enter our communicative world and try to change their ways of being; it asks us to enter theirs, work with them, and support their communication.
People also sometimes raise the concern that Intensive Interaction’s roots in infant-caregiver interaction models risk infantilising the people it supports. It is not about treating adults as infants, but rather understanding that communication begins in relationship, in attunement, in their experiences of being met. The question is whether practitioners use this as a behaviourist technique to try to make people conform or use it as a relational foundation to build from with trust and care.
Relational attunement and communication access are not in competition; they belong together, especially when we are supporting some of the most vulnerable members of our society. Intensive Interaction, when practised with genuine, affirming, person-led care, is not a standalone technique or a timetabled session, it is a way of being with someone, woven into the everyday fabric of relationships. It does not ask the person with Profound and Multiple Learning Disabilities and Profound and Multiple Intellectual Disabilities to perform, conform, or meet us in our communicative world; it asks us to enter theirs — with patience, with presence, and without agenda, as this is where safety grows, where trust is built and where communication, in all its forms, becomes possible.
As I have explored throughout this piece, the concerns raised about Intensive Interaction — about interpretive power, about AAC access, about whose meaning counts are all worth discussing, but they are answered not by abandoning relational practice. They are answered by valuing lived experience, reframing our own knowledge and assumptions, grounding attunement, and not presuming competence, and always staying led by the person we are with.
What Intensive Interaction offers is the relational foundation from which real communication, genuine access, and meaningful relationships can grow — safety, trust, presence, and the unhurried experience of being truly met.
We need to dance together, in whatever way works for each person, in each relationship, in each moment. This film from Ruth and Lucy from Cheshire Dance created for the PMLD Conference 2025, says everything that my own words cannot quite reach – enjoy!
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