Adopting a Capabilities Approach to Autism Science: Changing the Narrative

In this Behind the Paper blog, review authors Wenn Lawson and Melanie Heyworth discuss the importance of coproduced Autism research and the place of adopting a strengths-based approach to Autism science that reflects community priorities and centres Autistic voices.
Adopting a Capabilities Approach to Autism Science: Changing the Narrative
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We all “know” Autism only impacts children, right?  So, what happens when Autistic children grow up? Do they grow out of being Autistic? In conventional research, when it comes to Autism, very often the focus is on children or childhood. For many, whether we are researchers, families, allies, or the broad community, Autism remains a childhood diagnosis. Although research has rightly managed to highlight the experiences with which many Autistic children live, and which significantly impact young lives, too often, research has forgotten them when they grow up into Autistic adults. 

 Autism is a neurotype: an inherent way of experiencing the world and expressing those internal experiences that differ substantially from the non-autistic majority. Humans do not outgrow their neurotype. Autistic children become Autistic adults. The strengths and challenges that we experienced as Autistic children, become our experiences throughout our adult lives.

As adult Autism diagnoses increase exponentially (including as parents of Autistic children identify themselves as Autistic through resonance with their children’s experiences), we are becoming increasingly aware of the need to direct our focus towards Autistic adults.  Looking at adult Autism, listening to Autistic adult voices, can only complement what we know about our Autistic young people. There is a pressing need to consider Autistic adulthood not just through the lens of medical intervention and chronic life challenges, but with a view to understanding Autistic wellbeing and quality of life. This approach opens doors that enable access to work actively towards building needed elements for us to live flourishing Autistic lives. Autistic people deserve not just to survive, but to thrive, across our lifespans.

We are Autistic. We are researchers. We are parents and grandparents of Autistic children. Many of our friends, and colleagues, and communities are Autistic. And we share the joys and the challenges of living and aging as Autistic adults in a predominantly non-autistic world.

We want better for ourselves, our friends, our children, our grandchildren. We want them to have the opportunity to experience more of the joys, and fewer of the challenges.

Our review article is intended to be one step towards attaining that dream.

As researchers, we have seen so much research committed to or on our Autistic community, but not for us, and certainly not with us. For example, we have read the research that ignores the dignity and humanity of our non-speaking friends by omission. Research has failed to presume their competence, assuming instead they have nothing worthwhile to contribute, or stripping them of their autonomy in the research process. In fact, so much research excludes their experiences altogether. We have borne witness to the many projects that focus on how we, as Autistics, can do better at fitting in, conforming, masking our authentic selves, all of which fails to take into account our preferences. It doesn’t even consider what might be done to meet us halfway, or the mental toll that such performative expectations might take on our physical and emotional health.

More recently we are seeing hopeful signs that the research community  is beginning to include us – authentically and deeply – not just in the research questions posed, and not just as research participants, but in the whole research life cycle. This includes the initial research process, the design, the delivery, the analysis, and the translation of research knowledge. Framing research knowledge in practical, tangible and ultimately beneficial ways will enable us as individuals and a community to live more fulfilling, happy, and connected lives.

We hope that the review we have written with our co-authors here will contribute to that growing body of research on and with autistic individuals across the lifespan.

In preparing that review, we utilised Martha Nussbaum’s capabilities approach because it allowed us to explore the core elements that contribute to a good life for us, as Autistics. Nussbaum’s capabilities approach looks at multiple aspects of people’s lives and avoids narrow judgements about which aspects of life matter most to which people. It enabled us to get a broad and nuanced overview of how Autistic people are doing in multiple aspects of our lives so that we can bring a collective focus to where we (as the broad community) can do better in support of Autistic thriving, because we – as a broad community, and as a research community – are not doing enough. One thing we have learnt from preparing the review is that Autistic adults face many systemic and social barriers to our full and genuine inclusion at multiple levels.  There are so many ways in which we face marginalisation, discrimination, oppression and exclusion on a regular basis.

We have learnt some important lessons while preparing the review. For many Autistic adults, we think these lessons won’t be surprising, since they are what we live every day. But they are vital for the research community to learn too.

This review highlights so clearly the gap between research models and research translation for the autistic community. If we genuinely want to tackle the issues related to Autistic flourishing, Autistic mental fitness and overall Autistic wellbeing, we need to rethink our research and community priorities. We need to invite further conversation to enable meaningful impact for Autistic people and their families. Far too often, Autism science, and therefore the research, has been designed and conducted without the Autistic voice, leading to research that hasn’t addressed the challenges with which Autistic people live.

To drive more impactful research, academics should seek input from Autistic people in all stages of the research process. Autistic individuals should be active collaborators and partners of any research that concerns our lives. Our review shows us what conventional research is telling us when analysed through the lens of the capabilities approach. The next challenge is for researchers to conduct original research on the multiple aspects of Autistic flourishing. The review only highlights the beginning of such a process; this needs to be taken up by Autism researchers more generally across all domains so it truly can be “nothing about us, without us”.

 

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