Insights from an autistic researcher

Why was I always the one sent out of class? Why does everyone else seem to know what was happening and when? Why were the children in the playground so fickle, always changing their minds on whether we were friends? Growing up, I didn't understand my neurodivergence, but like many adult-recognised autistic women, I often felt the social exclusion. I shrugged it off as their problem, not mine… but it still hurt. 

I had to live my teens and twenties in unknowing confusion around how I processed the world. It wasn't until I had my own children and started researching autism – particularly female autistic presentation – that I finally understood those aspects of me. This is why I hold inclusion and the concepts of neurodiversity with such high regard in research, because for me understanding my autism was not a tragedy, it was a key to understanding how I was and ways I could make mine and my children's lives a little bit easier. 

Learning from the community

Neurodiversity is a community-informed term (Botha et al., 2024), that acknowledges differences in thinking as natural variations of the human genome. Popularised by sociologist Judy Singer (1999/2016) in her thesis and Harvey Blume (1998) in his journalistic work, the concept has evolved into a movement that offers an alternative to the medicalised perspective of neurodevelopmental differences (Dwyer, 2022). At its core, neurodiversity aims to enhance the rights of neurodivergent individuals, including autistic people. Advocates of neurodiversity focus on both the strengths and support needs of different neuro-types, promoting a more balanced and reflective understanding of neurodevelopmental differences. 

However, I didn't learn about neurodiversity from a textbook – I have been fortunate to learn about the underpinning ethos related to neurodiversity concepts from the words, ideas and actions of our autism and broader neurodivergent community. Accessing supports and navigating the school system for my children has not been easy, but I've not had to do this alone. I've been helped by neurodivergent community members from around the world who have freely given up their time to educate me, support me through lengthy diagnostic processes, and listen to my challenges, offering me advice, informed by what works for them based on their lived experiences. After a lifetime of not feeling heard, not feeling understood, I finally found a community and a way of understanding myself that made sense. This is why when I read about autism in research and I reflect upon my own experiences, it feels paramount that autistic people, many of whom would have felt excluded and not listened to, must be consulted on matters that impact them. 

A top priority

As a novice autistic PhD researcher and community advocate, ensuring that research is genuinely inclusive is a top priority for me. During the evaluation of my study on autistic women's experiences of diagnosis disclosure in the workplace, I realised there were personal, and procedural supports I had not initially considered in my research design. For instance, the intensity of conducting interviews left me socially fatigued and unable to complete any other tasks for the rest of the day. The challenges experienced with auditory processing and eye tracking made writing transcripts an excruciatingly laborious process. These experiences prompted me to delve deeper into inclusive research methods to inform a more comprehensive approach in my main study that considers the participatory needs of all autistic individuals involved, including myself as the leading researcher.

Upon reviewing the available literature, I found a small but growing body of work on inclusive research methods and numerous guides on how to apply inclusive and participatory approaches. However, I also encountered criticism that current mainstream approaches do not adequately include the voices of autistic people in ways that truly reflect their experiences (Gowen et al., 2020). There's also limited consideration of the support needs of those conducting research, especially when the researchers themselves are autistic. I found the distinctions between inclusive and participatory approaches confusing, as they did not consistently include necessary supports or incorporate autistic voices fully. 

This realisation highlighted the importance of experimenting with and innovating current methods rather than rigidly adhering to traditional approaches. From these reflections, I designed the Eight Principles of Neuro-Inclusion (Dark, 2024), a tool for considering inclusive research methods, to ensure that research truly supports all autistic individuals involved in the research process, including researchers, co-researchers, and participants alike.

The Eight Principles of Neuro-Inclusion

Respect – Respect the autonomy and perceptual positionality of all autistic people.

Representation – Include under-researched participant groups such as non-verbal communicators, women, non-binary, trans gender, and people of colour. For broader demographic groups include intersectional considerations so that accumulative challenges can be reflected upon in relation to the phenomena. 

Learn and Experiment – Learn from the wealth of information already available on inclusive research methods and consider an experimental approach to applying traditional methods in inclusive ways.

Remove barriers – Evaluate the study design by reflecting upon personal, social, and societal barriers to participation and how these can be removed or minimised to accommodate autistic participants and autistic researchers.

Inclusion of participants – As per participatory principles, consider the inclusion of participants throughout the research process. Define roles and responsibilities and evaluate researcher and participant power-dynamics. 

Actionable outcomes – Inform actionable research outcomes by considering the context, culture, and demographic of research, with an aim to assist comparison of data and application of findings to real-life contexts.

Language choices – Contemplate what language will be used in the recruitment, write-up and dissemination of research and the messages that words and terms portray about autistic people.

Dissemination – Create a dissemination plan that is considerate of how autism is discussed and in a format that is accessible to the participant demographic who informed the research.

These principles highlight the importance of a community-informed approach to ensure respectful and inclusive practices that capture a reflective understanding of autism and autistic people's support needs. I created this reflexive tool as a way of supporting myself to consider inclusive and participatory approaches as a continuum that can be applied creatively, not something that should be followed as a matter of process or procedure. 

I regard there to be a lack of creativity within adopted research methodologies, which stifles progress and innovation. By embracing a more flexible and inclusive approach to conducting research, we can open new avenues for discovery and understanding. This adaptability is crucial when researching autism. Incorporating creativity into research methods can transform the way we understand autism, moving away from a rigid, one-size-fits-all model to more dynamic and responsive frameworks. This paradigm shift is essential for producing research that not only advances academic knowledge but also has a real-world impact, improving the lives of autistic people across the lifespan. As such, I invite researchers to creatively explore and expand on the inclusive considerations shared in the Eight Principles of Neuro-Inclusion, applying what fits best with your study design and time constraints. 

Value, respect, understanding and inclusion

Autistic individuals face significant inequalities and exclusion from all aspects of society. The medicalised understanding of autism promotes a focus on deficits, breeding disregard, contention, and segregation between those that 'fit' societal norms and those who do not. That is not to say that all autistic behaviours are strengths, but they do all hold reason. The only way to inform a nuanced understanding of autism in the literature is to consult our autism community as the best informants of how they understand themselves, how they experience their neurodivergence, and the types of supports that work best for them. 

Listening and responding to the views and experiences of autistic people breeds a far more accepting society, where differences are not target for normalisation, but rather understood for their purpose and function, promoting those that bring comfort, joy and benefit and providing community informed supports for the challenges experienced.

I feel fortunate and privileged to have been given the gift of understanding myself and my children from a neurodivergent community perspective, informed directly from our autistic community themselves. However, I know many people who are never given this opportunity, trapped in systems that do not appropriately understand autistic expressions and needs. Many are on waiting lists, left with no network of support. One way these people's lives can be improved is through developing a nuanced and reflective understanding of autism that has real life implications for practice. This requires an inclusive and innovative approach to research that must value, and respect autistic perceptions, experiences, and insights, thereby moving away from exclusion of autistic people, towards creating a society where our autism community is understood and included. 

• Jessica Dark is completing her PhD at Birkbeck University on Autistic Women's Experiences of Diagnosis Disclosure in the Workplace. She is also an Associate Lecturer at Arden University on the Neurodiversity and Work PgCert program. In her spare time, she also supports the Educational Psychology Research and Practice Periodical at the University of East London on a voluntary basis, as their Communications Editor. She is also founder of ND Perspective, an online community learning platform and training provider. 

References

Blume, H (1998). Neurodiversity: on the neurological underpinnings of geekdom. Atlantic. 

Botha, M. et al. (2024). The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory. Autism, 28(6), pp. 1591–1594. 

Dark, J. (2024). Eight principles of neuro-inclusion; an autistic perspective on innovating inclusive research methods. Frontiers in Psychology, 15. 

Dwyer, P. (2022). The neurodiversity approach(es): What are they and what do they mean for researchers? Human Development, 66(2), pp. 73–92. 

Gowen, E., Taylor, R., Bleazard, T., Greenstein, A., Baimbridge, P., and Poole, D. (2020). Guidelines for conducting research studies with the autism community. Autism Policy Pract. 2, 29–45.

Singer, J. (1999). 'Why can't you be normal for once in your life? From a 'problem with no name' to a new category of disability'. In M. Corker & S. French (Eds.), Disability dis-course (pp. 59–67). Open University Press.

Singer, J. (2016). NeuroDiversity: The birth of an idea. Self-published, Amazon.