Exploring ‘lifeworlds’ with the autistic community

I offer this contribution as a non-autistic academic, who has worked in autism practice and research. In my practitioner years, I learned a great deal from the autistic people I got to know. Their achievements, preferences and aspirations often contradicted what I was being taught about autism in textbooks. This instilled in me a commitment to developing knowledge in collaboration with autistic stakeholders. I believe this is necessary if we are to challenge non-autistic assumptions about autistic experiences of what it is to be human.

If we frame autism as a disability in which existing impairments are compounded by barriers that are socially constructed (Shakespeare & Watson, 2002), then autistic perspectives, offering alternative interpretations of the social world, inform society's understanding of those barriers in critical ways. Philosopher Ian Hacking (2009) illustrated this powerfully through the example of hand-flapping. Many autistic people do this, but it was generally perceived by non-autistic people to be meaningless and therefore was often subject to behaviour modification. When autistic people started to explain its purpose for them, they described feelings of release, self-regulation and pleasure, which transformed the perspectives of caregivers and teachers. Behaviours previously perceived as problematic came to be understood as important.

These accounts also articulated and validated these experiences for other autistic people, who for the first time had a positive reference point. Such shifts are not small, they are seismic in the lives of autistic people, and to the way they are allowed to live. Autistic people have reclaimed this kind of behaviour as a manifestation of their basic human rights, creating a new, positive vocabulary around 'stimming'. Autistic researchers have been instrumental in starting to build a new, non-deficit knowledge base through empirical research (Kapp et al., 2019).

In this article, I will first consider the change and complexity related to the use of inclusive research with and by autistic participants. I will then look at work that has used interpretative phenomenological analysis (IPA) to illustrate inclusive approaches in action, considering what they offer and what this might mean for autistic communities. I am focusing here on how such approaches might inform our attitude and approach, rather than the 'nuts and bolts' of practice, which have been covered in detail elsewhere (Howard et al., 2019a; MacLeod, 2019). I will end by addressing what I believe to be the key challenges that non-autistic researchers should consider, making (I hope!) a convincing case for greater attention to be given to small-scale research as a key part of the inclusive research landscape.

The change

So first, let's consider the changes that have taken place in recent years to influence inclusive research within the autism field. I talk here about 'inclusive research', using Nind's definition of this as an umbrella term 'encompassing a range of approaches and methods… variously referred to in the literature as participatory, emancipatory, partnership and user-led…' (2014, p.1). Inclusive research approaches within disability research generally were originally developed as a result of pressure from disabled people. They were a response to research that traditionally objectified disabled participants, leading some disabled people to view disability research, not as potentially beneficial, but as a personal violation – not least because it often was, with participants often subjected to invasive treatments without their consent and against their wishes. A recent example relating to autism is the case of physician and researcher Andrew Wakefield, who subjected the children in his MMR study to invasive and painful procedures (Kmietowicz, 2012).

Within the UK, the disability rights movement drove calls for change and was initiated by people with physical/mobility impairments (Oliver & Barnes, 2012). This led to a perceived hierarchy and a focus on physical barriers (Beauchamp-Pryor, 2011), with certain types of individuals viewed as more difficult to engage. Autistic people have historically been categorised as having learning difficulties and framed as relatively complex to engage in research (Lewis, 2009). In the US, [autistic researcher] Ne'eman (2010) has described autistic people as 'left behind by the progress that much of the rest of the disability community has enjoyed'.

Within the UK, Milton and Moon (2012, p.794) have also voiced their frustrations at a research landscape in which autistic participants are often passive and 'frozen out of the processes of knowledge production'. This, then, is the change underway – autistic individuals have been demanding their seat at the table and demonstrating not just the value of the contribution that they can make, but how essential this contribution is to an evolving knowledge of autism (Chown et al., 2017). Non-autistic researchers, academics and allies have likewise highlighted that autism research – and practice – not only benefits from but needs the insights and involvement of autistic people if it is to stay relevant and credible (Pellicano et al., 2018).

The complexity

Let's start by critiquing our own title reference to 'the autistic community'. This suggests one coherent, unified group with shared interests and agendas. In fact, the autistic population is highly complex, encompassing a range of profiles and as above, a range of co-occurring conditions. Even the way it is identified carries huge ramifications. The diagnosis of autism may be imposed upon individuals without their choosing (often in childhood) or, as in the case of Singer, may be actively sought out (often in adulthood). The perspectives and priorities of these individuals might be radically different. So might the ways in which they relate to their diagnosis. In short, as Murray has summarised, '...the condition occupies contested ground in an arena in which it appears as if little is agreed upon' (2008, p.6).

Additionally, the intersection of autism with other forms of marginalised identity (for example, ethnicity and/or class) has been largely neglected in research up to this point, as has the influence of different cultural practices. Recently, there has been recognition that the proportion of autistic women has been under-estimated and we are still learning about what that means for autistic women and girls. We have been guilty of diagnostic overshadowing, whereby the focus on autism and its impact comes at the expense of other elements of life which might have as much, or sometimes more, influence on an individual's identity, opportunities and challenges. Furthermore, although we are getting better at consulting autistic participants directly, this is too often limited to those easiest to consult with – therefore the most articulate and often well-educated.

Finally, we have been slow to relinquish our grip on the notion that large-scale research is the most valuable. In an under-funded landscape, where hard-pressed practitioners in stretched services are often engaged with some of the most ground-breaking and innovative work as they respond directly to the real needs of those they support, small-scale research has a great deal to say about what works and is meaningful for autistic individuals, and their voices can sometimes be more clearly heard in research of this kind.

So taking all of this into account, who are we talking about when we talk about 'the autistic community' and how helpful is it? It may be more useful to consider 'autistic communities' as plural, in the same way that Coleman and Gillberg suggest we start to consider autism (2012). Better yet, to consider our autistic populations within their own communities, highlighting that to be autistic does not, or at least should not, mean being separate from the community in which you live. This makes the case for small-scale research which can focus in-depth on very specific contexts.

The contribution of inclusive IPA

Interpretative phenomenological analysis (IPA) has become an important contributor to inclusive research in autism, creating research environments in which autistic participants can be co-producers of autism knowledge and theory. IPA researchers have employed a host of inclusive approaches ranging from relatively simple steps to ensure accessibility, to co-analysis and co-production (for an overview, see Howard et al., 2019 and MacLeod, 2019).

IPA is considered here as one example of qualitative, small-scale research. The IPA approach is always idiographic, focusing in depth on a small number of cases, or even a single case (Smith et al., 2009). It seeks to give precedence to participants' interpretations, and how they make sense of their experiences.  In acknowledgement of the fact that a researcher's conceptions will both colour and complicate the 'process of interpretative activity' (Smith, 1996, p.264), they describe a 'double hermeneutic' (Smith and Osborn, 2008) which recognises that the participant, in giving their account, offers their own interpretation, which the researcher, in turn, interprets within their analysis. This requires conscious reflexivity on the part of the researcher as they move between direct analysis of the data and consideration of how their own bias comes into play. It's worth considering how each of these elements can contribute to an inclusive research study.

The Idiographic approach

IPA encourages exploration not just of the individual experience, but also of how this is contextualised by history, society and dominant cultural forces (Lopez & Willis, 2004). This would seem relevant to the context of autistic individuals, whose challenges are in some senses defined by their social context and their lifeworld, but it is also important in light of the danger of 'overshadowing' considered earlier, as it gives space for autism research to move beyond autism per se, and more completely address the multiple layers of experience (cultural, personal, economic) that form part of every autistic experience.

Autism IPA research typically has very specific subject matter: for example, the meaning of listening to music for autistic adults in South Africa (Venter et al., 2023), perceptions of the success of autistic adults (MacLeod, 2018) and the school experiences of bilingual children (Howard et al. (2019b). The research focus is often highly context-dependent. A consequence of this is that the research focus addresses specific areas of life experience requiring sensitivity on the part of the researcher, such as for example personal experiences of acute mental health facilities (Maloret & Scott, 2018), gender dysphoria (Cooper et al., 2023) and the menopause (Moseley et al., 2021).

The studies above challenge traditional narratives about autism in a number of ways. They move beyond deficit interpretations and beyond traditional 'norms', taking full account of other aspects of autistic identities beyond being autistic. They engage with autistic participants as people who experience challenges, pleasures, achievements and identities beyond those associated with autism. They explore aspects of autism in which there is very little existing evidence, and sometimes none at all, that is informed directly by the perspectives of autistic individuals.

The double hermeneutic

The 'double hermeneutic' required within IPA research can be compared to the 'double empathy problem' described by [autistic] researcher Milton (2012). Milton's example of a double empathy problem serves to remind us that if there is a fundamental difference between the autistic and non-autistic experience, then it is a mutual problem rather than being located entirely with the autistic individual. Within IPA, the double hermeneutic is a more general acknowledgement of the participant's and researcher's different experiences of the world. In practice, this troubles the IPA researcher to challenge their preconceptions at every stage of the process, and in doing so, IPA researchers make conscious efforts to achieve an 'empathic interpretation' with their participants (Humphrey & Lewis, 2008, p.29).

Reflexivity

Wedded to the 'double hermeneutic' is the need for the researcher to adopt conscious reflexivity throughout. The researcher is called upon to return to their own positionality throughout the process. Shaw talks of the 'challenge-to-competency' called for in IPA (2011, p.233), and autistic researcher Milton (2014, p.795) has talked more generally about the need for non-autistic researchers to develop 'interactional expertise'. Both are essentially ASKING that the researcher uses their reflexive position to not just be aware of their positionality, but actively critique it. In particular, reflexive IPA researchers are encouraged to critique the ways in which they might colour, limit or undermine the exchange from the outset. This perspective inclines them to consider practical means of reducing such barriers, thereby drawing them to think about inclusive research strategies.

These reflexive processes have been described in detail by researchers within their findings, evidently perceived by them to be important, not just as good practice, but as a means of actively developing their criticality as non-autistic researchers (MacLeod, 2019). This speaks of a benefit that is entirely mutual: autistic participants and co-researchers benefit by being heard and developing agency as self-advocates and researchers. Non-autistic researchers benefit by developing interactional expertise that enriches and informs their research.

The Challenge: Building evidence one brick at a time

In an earlier edition of The Psychologist, one answer to the question 'How do we make Psychology research matter?' was to 'move out of academic buildings and into community spaces'. Inclusive IPA research does this. It seeks to explore participant's lifeworlds on their own terms, with studies consisting entirely of participants' accounts and dominated by direct quotes. These excerpts are often very powerful, articulating practical barriers, philosophical dilemmas and sometimes deep joy. Despite the researcher bias inherent in the selection of text, in giving space and attention to participants' own words, IPA encourages the reader to empathise directly with their experiences.

IPA consciously pauses to consider the individual experience in-depth and so is necessarily small-scale. As such, it can be subject to the criticism that its relevance is limited. However, large-scale studies often rely on sizable pots of funding, tied to specific agendas and often to academic institutions. In contrast, small-scale research is frequently unfunded, grounded in practice and undertaken by researchers closely connected with the specific subject matter.

Smith (2004) has talked of 'core constructs' (p.51) emerging from accumulating IPA studies. The significance of gradually building a robust body of evidence from foundations rich in depth is no minor thing. This way of building evidence opens doors for autistic researchers, practitioner-researchers and researchers focusing on populations in the margins, to make a contribution that might start by drawing cautious conclusions and in time, become game-changers.

The research strategies described here are not restricted to IPA studies and there is a heartening amount of inclusive autism research now taking place. I do not suggest that IPA is more effective than other approaches. IPA relies heavily on spoken or textual accounts and so although it has been used effectively with a range of participants, it is not suited to participants unable to communicate in these ways. However, many of the inclusive techniques used can be employed in other types of approaches. For a plurality of autistic profiles, we need a plurality of approaches. It is important to always remind ourselves of the voices that are missing in our research, but rather than just lamenting the voices missing in this body of research, we should work to ensure that what we learn here can be used to bring those voices into future studies, in ways that are meaningful, positive and ethical for them.

I hope I have shown that IPA's distinctive features pull the researcher towards an inclusive, self-critical approach, and the research itself towards that which matters most to the participant, troubling the status quo of the researcher/participant dynamic in useful and productive ways. This is perhaps best demonstrated in the case where an autistic participant, called on to check the team's analysis, was so influential that they became the third author (Jones et al., 2013). The matter of academic credit is not a minor one for anyone aspiring to an academic career, and inclusive research can be an important means of opening this notoriously impermeable door.

Alliances between autistic and non-autistic researchers are crucial for autism research, to ensure it continues moving in its current direction, relevant to the daily lives of autistic individuals and their loved ones. If we consider autism from a historical perspective, clinicians and academics have a duty to make reparations for damage done in the past, either with the best intentions or sometimes, the worst, to the most basic human rights of autistic individuals – we owe a debt to collaborate in any way we can find, to foster constructive relationships and create opportunities for autistic people to participate, co-construct and to lead autism research.

Dr Andrea MacLeod is an Associate Professor at the University of Birmingham. Dr MacLeod's research interests focus on the development of models of support for autistic adults and collaborative, participatory research methodologies

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