Pulling together all the threads to create something beautiful

We want to tell you about Dr Mona Delahooke.

A paediatric psychologist in the US, her work is not directly about neurodivergence, but when we started working on this issue, she was one of the first contributors we knew we needed to feature.

For those not familiar, Mona is the author of Beyond Behaviours and Brain-Body Parenting, and she leads an active online community. Mona's work quite literally seeks to turn current parenting paradigms upside down, challenging the current 'top-down' (brain-based) approaches and advocating for a 'bottom-up' approach which supports a child's biology (body-based) and centres the child's experience of the world through their central nervous system. Her work is embedded in neuroscience and child development and centres on the imperative need for regulation and safety.

In writing Beyond Behaviours, Mona had initially focused her work on understanding the central nervous system of typically developing children and the impact the central nervous system has on a child's regulation, sense of safety and the output we all like to measure behaviour.

In Brain-Body Parenting, Mona herself acknowledges the huge significance this way of thinking might have for neurodivergent children. She writes that children's 'control-seeking behaviours' show us that a child's sense of safety is compromised; this stands in stark contrast to the way we pathologise control and demand avoidance in neurodivergent young people.

As we pulled an issue together about 'paradigm shifts' in the neurodivergence fields, we wanted this parenting paradigm shift to reach psychologists in the UK too. There has been a grassroots movement towards more connected parenting that focuses on consent and agency and much of the drive for this comes from the PDA community. It has been said that PDA parenting is 'gold standard' parenting; this does not refer to the agreed, evidence-based, intervention used by NICE as the bar to which all other interventions must be measured, but to the deep, intrinsic, connected, nuanced, child-centred approaches used by parents to support the highly sensitive nervous systems of their PDA children.

In the work we do with psychologists and parents we feel that Mona's work draws on the threads from many disciplines and evidence bases to give an infrastructure to what may be perceived as a radical approach. So we wanted to share a little about our understanding of 'gold standard' parenting, and how Mona's work has informed us.

Our idea of 'gold standard' parenting didn't always look like this, and indeed the clinical gold standard looks very different. Many psychologists who read this will be teaching, researching or using NICE guideline-recommended models of parenting just like we did; and they have merit and strong evidence bases. But how do they fit with the way psychological thinking is driving forward? How do they land for neurodivergent children, whose threat systems might be more sensitive, more activated by a neurotypical world or more attuned to hierarchy and justice?

PDA society practice guidance tells us that typically these parenting approaches do not work for PDA children and instead lead to escalation and an increase in dysregulation. Reading Mona's work you will notice that she draws on child development and neuroscience, polyvagal theory and mentors and teachers from her own clinical practice, resulting in a framework that is itself 'bottom-up' informing better attachment and is trauma-informed (or indeed preventative).

Psychologists, theorists and medics alike have begun talking more and more about how 'the body keeps the score', how trauma is held in the body, coded in the nervous system and living in our somatic experience of the world, as well as in our relationships. It was here we both began, on our own journeys to find Mona's work.

For Anita, after years of being trained in and researching behavioural parenting methods then beginning to raise her own children in this way, something was not quite fitting with her intuition, training and experience working with trauma in developing countries. And for Jennifer, working with attachment models in schools with autistic children and caring for children made her question her use of the naughty step, 'time out' and reward charts, in the context of her own neurodivergent experiences and parenting approach. We both found Dan Siegel's work, quickly followed by Stephen Porges' polyvagal theory, and in our personal and clinical lives began applying this to thinking about neurodivergent children, and about parenting.

But it was Mona Delahooke's work which pulled together all the threads, in Jennifer's words, creating something beautiful, which for the first time seemed to explain all the aspects of how the neurodivergent brain works. Not just in how it works; how it exists in a wider ecosystem, where a child, parent, family and community co-regulate to keep a child's 'platform' of threat and safety in balance.

Here the world of trauma, parenting and neurodivergence necessarily converge. Mona's work gives a language to the internal experience of neurodivergence, intergenerational trauma, and a highly sensitive central nervous system that is constantly scanning for danger. More than that, it gives a framework for recovery (parents) and resilience and safety (children).

So let's go back to that elusive 'gold standard'. All standards require a lens of critical appraisal when reviewing their associated evidence base, and we wanted to include Mona because she sets an example of bravery in challenging the status quo here. Mona has been outspoken in challenging the diagnosis of Oppositional Defiant Disorder.

Perching perilously somewhere between a neurodevelopmental condition, a mental health diagnosis and a description of behaviour, Mona has questioned why this label still exists, what it means for whom and how it influences how we practice. We find ourselves wondering if this label might represent neurodivergence in the context of social disadvantage, and a response by society to pathologise rather than help.

Mona, along with members of the PDA community have asked if anybody truly fits the criteria for ODD and what end does it serve? The PDA Society have published practice guidance that supports a differential diagnosis and details approaches that can truly create a greater understanding and way forward.

Mona has also put her head above the parapet in the field of neurodivergence by publicising the ongoing debate around Applied Behavioural Analysis (ABA) for autistic children in the US. While the debate is happening here in the UK too, it perhaps has more salience in the US, where ABA is the recommended intervention you can access on insurance if you have an autistic child.

Many commentators will argue that this approach has the potential to support and embed a deficit-focused model of autism, promote masking and its associated mental health consequences, and to form part of a very slippery slope that has been used to justify the abuse of autistic children in some settings. We admire Mona's bravery, as a woman, to question the colonial and patriarchal foundations of a diagnostic system and associated interventions; one that in the past has done harm to groups society wanted to see comply with their social norms.

We often use the word radical to mean new, extreme or political. But radical also means to return to the roots of a word or a movement. Radical, in this context, gives an evidence base and infrastructure that restores and validates the innate wisdom of parents globally who have been disenfranchised from this knowledge by systems of oppression such as the colonial project. When we look at parenting interventions and indeed diagnostic labels for children, Mona inspires us to invite psychologists to ask "What outcomes are we measuring?", "What is the long-term impact?" and "Who is this intervention for?".

Mona's work has been central to our journey in the field of neurodivergence; where our identities as parents, practitioners and experts by experience intersect. This is why she was one of the very first contributors we invited for an interview; one she was excitedly organising with us. But shockingly, two weeks before our planned interview, Mona became critically unwell with a ruptured brain aneurysm.

While in recent days at the time of writing, Mona has made amazing progress and reached out to her psychological and parenting communities for the first time, she remains very unwell and we wanted to hold a space for her important body of work, as well as send our hopes and wishes, to her and her family on behalf of the UK psychological community.

Mona sets an example of someone so humane and compassionate in approach, but embedded in evidence and a generously critical mindset. We want to thank you Mona, personally, and on behalf of all the psychologists we hope your work will now reach. We celebrate your contribution thus far, and we are excited to travel with you on the next leg of your journey. Get well soon. 

- Jennifer Law and Anita Marsden are members of the guest editorial team and teach a parenting module on the Clinical Psychology PhD at Cardiff University. They met, with their children, at forest school and are navigating neurodivergent parenting together. They have set up Allez Oop to support other families in their journeys.