Nothing about us without us – Autistic involvement in research 

I have research on the brain at the moment! Mostly because I attended the Autism Cooperative Research Centre (‘Autism CRC’) participant day yesterday. It was one of a very small number of autism events I have attended in person since the outbreak of COVID in 2020. Of course my favourite thing was catching up with fellow advocates and friends I haven’t seen in over three years but it was also about the research! 

The CRC has been going for a number of years and I have had involvement  with them quite a bit over the years. Yesterday I earned a reprieve from presenting so watched everyone else’s presentations without the distraction of needing prepare one of my own. It was lovely. One thing about the day was the very strong involvement of autistic people. Each panel had autistic voices and some of the events had exclusively autistic presenters. You would think that this is how such events are always done but sadly that is not the case.

Research is important. If you want to initiate a service, write a policy affecting people or simply understand the experience of a particular demographic group then you will need research evidence and data. There are different ways of collecting data, some of which are inclusive and respectful and other which, well, aren’t! I am an author and I use a lot of research evidence in my books. Research enables us to realise what needs to be done and to evaluate whether interventions and supports are actually helping. 

Involvement in research happens at a range of levels. One of these is researchers themselves – the people conducting the study and collecting the evidence. Another way of being involved in research is as a participant providing the evidence and data based in your experience. And another way of being involved in research is as a sponsor – providing funding and auspicing the study. There are a great many roles in the business of research and traditionally the people who from the demographic being studied, and especially those from disadvantaged / intersectional groups – e.g. Autistic people – are excluded from most or even all of those roles. 

I often say that not including autistic people in things which impact on us is a bit like holding an engineering conference. The organisers invite an architect, a builder, someone who lives in a house, a mortgage broker, a bricklayer and a concreter but no engineers! Excluding the key player in anything – autism or engineering – is not very helpful. It actually means that the quality and helpfulness of the research is very much limited. I often think many researchers do not realise that the outcome of their research should primarily be one of supporting autistic people. Not including autistic voices in all levels of research is just nonsensical. It comes from some legacy-type attitudes around autism, ableist views that assume incompetence and think that the only important people in the autism ‘picture’ is neurotypical parents or clinicians rather than autistic people ourselves.

In recent years this has started to change but there are still organisations and individual researchers who do not demonstrate their inclusivity and do not wish to involve autistic people at any level of the research process.  The findings of autism research which does not include autistic people are not likely to be very helpful for autistic people. 

Sometimes researchers will recruit autistic people as participants in their study. This is a good first step but we also need autistic researchers and project leaders to ensure autistic voices are included. This should not be a tokenistic approach but genuine inclusion. We are going to get far more useful data and understanding where research is based in inclusivity and conducted by autistic researchers with autistic participants. This is a critical area and inclusion of autistic voices  is absolutely essential if we want our research findings to be helpful and also if we want to be respectful and inclusive of autistic people and create policies, services and information which actually helps us to navigate life better.  

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