Recently I have received feedback from a number of sources suggesting that I need to be careful when listening to autistic people, and integrating their perspectives into my research agenda. The implication is often that I would be better off if I didn’t talk to autistic people quite as much as I do.
This has been pretty challenging for me. I obviously don’t always (often? ever?) get it right, but working alongside autistic people, trying to ensure that the research I do aligns with their priorities, is absolutely a matter of principle for me. You can see examples of that in the Shaping Autism Research seminar series, in which I was proud to take part, and my personal mentoring relationship with Kabie Brook.
At the same time, I deeply respect, and am personally fond of, many of the people who are telling me I need to watch my step in relation to asking autistic people what they think. These people are all doing high quality research and are super brainy. More than that, I have no doubt that they care greatly about making a difference in the lives of people on the autism spectrum, and their families. So why the reluctance to ask #actuallyautistic folks what they think?
Heterogeneity and representation
One of the few things that I think everyone can agree on in relation to autism, is that it is complex and variable – this is known as “heterogeneity” in scientific circles. There’s an over-used phrase you’ve probably heard which encapsulates this: “if you’ve met one person with autism, you’ve met one person with autism“. While this might be a useful message for some people to hear, it can really stymie engagement in research. Emphasising variability within the autism constellation means that we can discount any autistic voice as just being ‘one person’.
This is clearly ludicrous. The same phenomenon applies to any and every community. Gloria Steinem is “just one woman”. The head of the Muslim Council of Britain is “just one muslim”. A Stonewall spokesperson likewise cannot, in and of themselves, represent the diversity of the LGBTQ+ community. We recognise the inherent limitations of hearing from a single spokesperson, but that doesn’t mean these people’s voices can or should be ignored. That’s not a reason to exclude them from the debate. In fact, this point touches on a key difference between research and consultation. Researchers can collect large volumes of data from people, linking their attitudes and opinions to their personal circumstances. It is a great way to represent diversity within and between communities – as in this example from our own research.
Consultation (or engagement, or representation) serves a different purpose. It can help us understand what questions to even think about asking. It can contextualise our study designs and interpretation of data within real world stories. It can provide a pathway for our results to find their way back out into the community. It is an essential complement to the business of research.
Speaking vs non-speaking
A specific manifestation of the argument that one autistic person cannot represent their community applies when considering the perspective of those people on the autism spectrum who don’t easily advocate for themselves. This includes people with intellectual disability and those who are non-speaking or who have extremely limited vocabulary. A great deal of autism research is focused on understanding and providing support specifically to those individuals, their families and their allies. How can we capture their opinions and filter those into our research?
A glib answer is to say that we should ask them. Of course this is true. We could all work harder to find effective ways to understand those autistic people who do not use traditional modes of communication. But this is a massive endeavour, and one in which I think we have only recently begun to make progress. In the meantime, I argue, talking to Autistic self-advocates and representatives of autistic-led organisations is a good starting place.
This isn’t to say that other perspectives should not also be taken into account. Parents, siblings, and people who provide professional support to people on the autism spectrum have a clear role to play. They can be proxy-advocates, with intimate knowledge of the likes and dislikes, strengths and needs of their loved ones. Furthermore, when developing new ways to provide support to autistic people, it is likely that parents and professionals will be involved in the delivery of those supports. Thus, we need to engage with these groups in their own right, as stakeholders in the design and outcomes of research.
BUT we are missng the point if we think doing so can replace engagement with autistic people themselves. Autistic people can elucidate aspects of the autistic experience which are common to many – what does it feel like to flap or stim? what does it feel like to be prevented from doing so? More than that however, I struggle to understand how anyone can claim to care about people with autism and intellectual disability if they don’t also respect people with autism and no intellectual disability. There is an interesting and important conversation to be had about how to better represent the voices of non-speaking autistics. We cannot begin to have this conversation if we don’t first demonstrate our respect for the wider neurodivergent community by listening to their voices, and amplifying them.
Engagement is difficult
I think that another reason why some people have urged caution when integrating autistic views in to my work is that they are genuinely worried for me that it might be a negative experience. What if they say what I’m doing is a waste of time? what if they don’t like it? what if they are rude? or what if they don’t understand it properly? My first response to these well-meant but infuriating concerns is that this is the WHOLE POINT of engagement. What if autistic people don’t like my research? Then maybe I should be doing something different. What if they don’t understand it properly? Then maybe I should be working harder to explain it effectively.
However, this is fairly easy for me to say – I’m not starting from zero. For a beginner who is just starting to engage with autistic people (and I would say the same applies to any form of community engagement) these potential problems can be really off-putting and hard to overcome. It is very difficult to: create an environment where people are able to speak their minds; share your ideas in ways which are accessible without misrepresenting key details; balance community priorities with other pressures such as funder or supervisor expectations; understand how the perspectives of the small number of people you are able to talk to fit in to the bigger picture. The Shaping Autism Research website has got some great resources to get you started and more will be popping up soon. I would also add, just because something is difficult, that doesn’t mean you shouldn’t do it. In fact, almost the opposite applies…
What next then?
Needless to say, any well-meaning advice to dial back the engagement is being roundly ignored at DART. But I remain concerned about the wider phenomenon of a research community trying to do good, useful, important work, while also avoiding getting ‘caught up’ in an autistic led agenda. We must not forget that people who are happy with the status quo don’t need to shout. We are the status quo – we’ve got their back already. By definition, someone who feels the need to speak up probably has a problem with the way things are being done. This doesn’t make them a trouble-maker. It makes them an advocate.
All too often, the response of the establishment to such shouty advocates reminds me of the way suffragettes were viewed in their day:
Suffragette: I want the vote
Suffragette. DON’T IGNORE ME. I WANT THE VOTE
Establishment: I think you’d better lie down, you’re becoming hysterical
The term ‘vocal minority’ is used often to undermine the arguments of autistic individuals campaigning and advocating for particular topics and types of research. As a result, they are caught in a Catch-22 situation. If you don’t speak up, how can anyone hear your point of view? If you do speak up, you are one of the ‘vocal minority’ – automatically classified as a rogue agent and impediment to progress.
So my question is this – how many people have to start shouting before we’re prepared to listen?
* I feel I can’t complete this piece without saying something specific on the topic of the language I use to talk about autism. I don’t want to sideline this important and big topic but in a nutshell the problem I am facing is this:
- almost everyone I know who is autistic prefers to be called an autistic person. This applies to people I know personally and the vast majority that I interact with on twitter
- the research evidence so far suggests that there exists a substantial group of people who prefer person-first language and a large group who aren’t that bothered either way
- If I consistently use identity-first language, aligning with what autistic people around me prefer, I risk excluding or offending those whose preference for person-first langage is represented in the research evidence but who I don’t hear from directly
- If I consistently use person-first language I am ignoring the voices of autistic people around me
How to resolve this conundrum? Well, on this site and in my talks about autism I use a mix of language – probably pleasing no-one and offending everyone.
The reason I think this is relevant is that I think that my choice not to consistently adopt identity-first language may appear to be an example of what I am arguing against in this blog post. But I am not ignoring autistic voices here. I am merely torn between two sources of evidence and genuinely feel stuck about how to proceed…