Neurodiversity is a somewhat fraught term – for some associated with a specific socio-political movement, for others a more neutral descriptor. One source of conflict between those who explicitly adopt and endorse a neurodiversity framework and those who reject it is the perception that neurodiversity is incompatible with provision of support. This is important for me personally to disentangle, because I try to embrace a neurodiversity perspective while also doing research which focuses on intervention development, evaluation and delivery. In this post, I’ll try to elucidate an argument for how neurodiversity and early intervention in autism specifically can be aligned with each other, permitting the development of robust and effective supports while at the same time recognising and respecting differences. We shall see how I do… But first, some definitions.
What is neurodiversity?
The term neurodiversity describes the natural variability in neurological diversity between people. Neurodiversity encompasses subtle differences between individuals, but is also commonly used to capture forms of diversity that are categorically labelled by medical professionals – as in the case of Tourette’s syndrome or schizophrenia. There are some clustered forms of neurodiversity that can be termed “neurodevelopmental conditions” – e.g. autism and attention deficit hyperactivity disorder (ADHD) – because the differences observed between people with and without these conditions clearly arise in childhood and these neurological differences have developmental effects that change over time.
What is early intervention?
When a diagnosis of a neurodevelopmental condition is given in childhood, service providers from clinical, education, social care and third sector organisations may offer ‘early intervention’ to ameliorate what is seen as an adverse developmental trajectory. Early interventions are many and varied. They include Applied Behavioural Analysis, and Early Intensive Behavioural Intervention (an ABA-variant) but also parent-training and parent-group interventions, technology-mediated interventions and play-based approaches. While some interventions aim to ‘reduce symptoms’ others have a more specific target such as increased verbal communication.
At first glance, early intervention efforts seem to be fundamentally incompatible with a neurodiversity framework. Since the concept of neurodiversity emphasises human diversity as a natural phenomenon without recourse to value judgements (“my brain is better than your brain”), acceptance of these differences naturally follows. Meanwhile early intervention seems to be focused on changing brains – many specifically invoke the ‘plasticity’ of the brain in infancy and the pre-school years as an argument for intervention as early as possible.
This leads to a series of challenges for research and practice. One problem is that parents (and other supporters) of children who encounter significant obstacles to daily living and who have very high support needs may think that neurodiversity contradicts, undermines or denies their experience. It may seem that there is little in common between a seemingly powerful, skilled, articulate advocate for neurodiversity and a non-speaking child having frequent seizures, engaging in self-injurious behaviour and requiring one-to-one support. This perception may prevent different members of the autism community from effectively supporting and learning from each other.
A second issue is that there are powerful reasons from developmental psychological theory to focus on early life. The concept of brain plasticity isn’t really about capacity to change, but more about capacity to learn. The nature of developmental sequencing means that there are certain skills (e.g. fluent spoken language) that can be acquired in early life but are virtually impossible to pick up later on. If we value these skills, then we need to find a way to foster them in early childhood without violating the principles of neurodiversity. A third reason to invest in understanding and support in early life is that social structures in our society also focus attention on the early years. Children in most western societies will start school at around 5-6 years old and preparing children to thrive in this environment is a priority for parents and early years practitioners.
So, what can we do about it?
I think there are about four ways in which we might merge the neurodiversity framework with an early intervention agenda, to the benefit of the neurodivergent community and their allies. As usual, I’m going to talk about autism, though I think some of the arguments might be relevant more widely.
Four solutions for early intervention in a neurodiversity framework
- Strength-based support and measurement
This solution is probably the most established method for embracing differences while delivering support, at least in the research literature. It has long been known that autism is associated with a so-called “spiky profile” – meaning that when tested on a battery of assessments, autistic people often score at widely differing levels depending on what the test is measuring or how it is administered. We may under-estimate an autistic child’s learning potential if we fail to acknowledge this intra-individual variability, and only use a narrow range of assessments. In the context of early intervention, strength-based support might mean a curriculum focused on developing known areas of ability. This could enable an autistic child to excel in those domains, gain self-confidence and perhaps use those strengths to compensate for areas of difficulty in the future. Recognising strengths should also be a part of any description of an autistic individual – even if support is being targeted at an area of difficulty. Especially when an early intervention aims to direct a child’s attention to a new area of learning, we must take care that this does not cause harm by detracting from their personal abilities and interests. A failure to capture areas of ability risks not only labelling the child solely in terms of a collection of deficits and delays, but also missing one of the ways in which an intervention might be harmful.
One cautionary note here, however. Neurodiversity is not just about “strengths” – neurodiversity doesn’t mean “embrace people who are different but also clever”. Neurodiversity encompasses people who do find it really hard to learn new things, across the board. I’m not saying that such people don’t have strengths – they might be funny or kind, fast runners or groovy dancers. But we must remember that embracing neurodiversity doesn’t have to mean detecting hidden talents on a researcher’s test battery.
- Modelling intervention on autistic learning and play
Many autistic people have accumulated vast quantities of complex knowledge through self-taught means. Their self-reports tell us that this learning is often immersive, intensive and prolonged, but we have little empirical evidence exploring exactly how autistic learning works. Likewise, at the moment we don’t know much about the way in which autistic children choose to play and the potential consequences of these choices (beneficial or disadvantageous) for their development. Many interventions are delivered in play settings and / or measure their impact using coded observations of play. When these place normative expectations of play on neurodivergent children we deny the possibility that autistic children have their own, valid approach to play. Thus a goal for the early autism intervention field should be to work with autistic co-designers to create early years supports that recapitulate the ways in which autistic people play and acquire skills and knowledge for themselves. In this, autistic parents of autistic children will be particularly helpful research partners.
- Autistic-led targets and outcome measures
Whether an intervention approach receives funding for further research or is translated into practice depends hugely on showing change in the selected outcome measures – researchers are always looking for the group who had the intervention to make gains of some kind, relative to the comparison group who didn’t get it. Identifying targets and ways of measuring these that are meaningful to, and endorsed by, the community is essential. The risk otherwise is that early intervention serves only to teach a child to mask their autism. Recent data indicate the severe outcome that may arise from such suppression: in a survey study, ‘camouflaging’ of autistic symptoms was a significant predictor of suicidality amongst autistic people. A crucial task for the future then is to work with autistic people and their allies to develop ways to capture change that is positive and valuable without enforcing neurotypicality and causing harm.
- Focus on the environment
A final way in which neurodiversity principles can be applied to early intervention is to shift the focus of the intervention away from the child and onto their environment. This can include teaching people around the child – their family, professionals in a childcare setting etc. – to adjust their behaviour to foster personal growth and well-being. In this scenario, autistic adults offering training to parents or early years practitioners has enormous promise, but is still rare. An environmental focus might also mean creating enabling settings and activities at home or in (pre-)school. My first advice to a parent whose child has recently received an autism diagnosis would also be: find activities that they love and do them often; to create a safe and comfortable sensory environment in your home; give your family, friends, colleagues and neighbours resources to learn about autism. While many early intervention models will talk about following the child’s lead and providing motivating toys, these ideas are not really core to the available early intervention approaches. A key step forward would be to include more work on how to create a safe space around the child in which they can be themselves, and thrive.
The ideas sketched out here are not revolutionary, but they will be hard to deliver. As researchers and practitioners, we need to be prepared to throw away the text book on what we think we know about early development. This includes radically re-thinking our language. I’ve used terms “intervention” and “outcome” here on purpose in order to highlight the contradictions, but increasingly I am learning to think about this topic in terms of support, growth and well-being. We must ask ourselves, what are the truly important outcomes and reasonable routes to those outcomes? And in doing so we need to incorporate diverse perspectives from the autism community. Any new approaches developed that merge neurodiversity and early intervention must be evaluated no less rigorously than their forebears – a failure to do so means selling the autistic community short.
The rewards of this endeavour will be great. Neurodiversity-informed early intervention can help to bridge the gap between parents crying out for post-diagnostic support, and autistic people demanding respect and participation.