Written by Jaja Choktanasiri

This year marked the start of one of the best journeys of my life: delving into the realm of Autism research.

I have ventured into research before; I grew up in a family of individuals working in medical research, and for the past two years of my undergraduate degree, I also explored a lot of research concerning inequity and inaccessibility in education. Yet, I would hardly consider myself an Autism researcher – until now, that is.

Last year, in September 2023, I was privileged to interview for and be appointed as the first Autism@Manchester co-production officer. Alongside my dissertation on Autism support at university, little did I know how much this role would allow me to realise the importance of having Autistic Autism researchers in decision-making seats.

What I have learnt about the importance of Autistic Autism researchers

Lived experiences are not just buzzwords; they are stories

Until being involved in this co-production role, I admittedly got annoyed at non-Autistic researchers boasting about how they involved individuals with lived experiences and how inclusive their research is in doing so.

Undoubtedly, these non-autistic researchers mean well, and involving the Autistic community in research that concerns them is always a sign of good intentions and research on the non-Autistic researcher’s part.

However, as I read more research as part of my role, I realised how crucial it is to have Autistic researchers tell their own stories. Research, such as that of Monique Botha, details Autistic lived experiences as central to the research question; they tell the stories of struggles and triumphs of Autistic people that are still ongoing.

I find it empowering to see Autistic people being at the forefront of researching issues that concern the wider autistic community. It is also empowering to see Autistic people pose research questions themselves; it makes me believe I can do the same.

Ultimately, these researchers and their papers have given me relief and reassurance that lived experiences are not just buzzwords; they are vital stories indeed.

We can bridge understanding

Another practical point about ushering in more Autistic Autism researchers is that Autistic researchers can bridge the understanding between the general Autism community and what’s happening in research.

Whether it be the general distrust (understandably) between researchers and Autistic people, or the overwhelming complexity of the research process, I know there is much to do to help the public understand what happens in research and the importance of research.

Having Autistic people in the researcher seat enables us to create accessible materials to get more people reading, understanding and supporting meaningful research. With Autistic Autism researchers, we can bridge understanding between different stakeholders of Autism research.

You can’t be what you can’t see

Lastly, one of the most important things about seeing and being an Autistic Autism researcher is being the person I wish I met when I was younger.

I can imagine that many Autistic researchers feel the same. The closest representation I had of an Autistic researcher is the infamous Sheldon Cooper – a stereotypical white male with notable Autistic and Savant traits.

Don’t get me wrong, the joy I get from watching the Big Bang Theory with dinner is unparalleled, but equally, I did not think someone like me, the opposite of Sheldon, could be a researcher and thrive, too. It might be cliché to say it, but you can’t be what you can’t see.

Not only do we need more Autistic researchers in Autism research, but we also need to do more to facilitate a diverse pool of researchers. Autistic female researchers, non-speaking researchers, Black Autistic researchers, researchers from working-class backgrounds, researchers with ideas challenging current beliefs – we need them all.

Stepping into Autism research, I was excited by tales of being able to stand on the shoulders of giants in the field, and I have certainly been honoured to meet so many pioneers in Autism research.

However, I think it is always special when I meet an Autistic researcher and those who collaborate with them; these people feel like friends, and they build each other up to go even higher, to make more Autistic people seen.

In a supportive environment like that of Autism@Manchester, being an Autistic Autism researcher feels rewarding. Not only do I get to advocate for fellow Autistic researchers and people generally, but I know that I am always standing on the shoulders of friends, helping me through every fall and rise.

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