This topic gets discussed so often amongst autistic people, our families and autism professionals. Most of us are probably bored of the subject but I wanted to write down my view so that when I get asked to consult on other people’s projects I can link to this as my justification for why I always recommend identity first when talking about autistic people collectively.
1. I prefer ‘autistic person’ because I see autism as in integral part of my identity. ‘Person with autism’ implies that I could remove it. I can’t and would never want to. When you are thinking of autism as separate to the person, you are medicalising it and then you get into territory like finding cures. Cure is a dirty word for many autistic people. To me, suggesting I cure my autism is as offensive as suggesting I cure my personality. (Note: I know there are some autistic people who want to be cured but that is for a future blog post).
2. Person first language is considered by some as polite, because the person is ‘more than their autism’. I am more than being a woman, a brunette, or a mother but no one feels the need to use person first language for those parts of my identity because they are not seen as negative. If you are concerned about this then you must have a negative view of autism (as most people do unfortunately). People are trying to be nice when they say I am more than autism, but to me that should be so obvious it does not need pointing out. Autism is not a bad thing, I am not ashamed to be autistic, so I do not feel the need to distance myself. True some aspects of being autistic are annoying (like the stigma and being spoken over) but on the whole I am happy as I am. I would never want to stop being autistic. I am autistic, I am me. What is polite when talking to individuals, however, is to respect their personal choice. Personal choice should always trump the community’s preferred choice.
3. Professionals: But we are trained we must always use person first language.
Me: Yes most professionals still are, but your training is out of date as this is no longer the preferred choice of most autistic people.
Also many professionals were trained a few decades ago and don’t keep up to date. They then go on to train the new starters with their out of date perspectives. This is why including the autistic voice is so important with any training. Engaging with the autistic community is essential for all autism professionals.
4. There have probably been a few million twitter and facebook surveys about person vs identity first language and they always show that we autistics tend to prefer identity first language. ‘Twitter is biased though’ is the response and it is a completely fair response as social media is completely biased and we all have our own echo chambers. We now have some academic research that says similar though (Kenny et al., 2015). Most academic research also has flaws and biases but they are different ones at least, yet the result still shows the same preference. The Kenny et al. (2015) research looks at the preferences of professionals and family members too, but I think the preference of autistic people is what matters most.
5. Some big organisations are now starting to switch to identity first language. Whilst this should not be a deciding factor, in my view, I mention it regularly as some professionals take a bit of convincing when I suggest they change the language they use in their workplace. They can’t believe that they should change what they are teaching their undergraduates just because I, a mere autistic person, tells them they are out of date. I am just one person, how do they know that is what other autistic people think? So I show them that the NHS now recommend identity first language. The national autistic society use identity first language too. It irritates me that people listen to big non autistic led charities or organisations ahead of autistic people but sadly that is how it is and I’m happy to use those organisations to make my point.
6. The language an organisation chooses to use, is a clear indicator of whether they listen to autistic people. Most who are still using person first language either have no clue that preferences have been changing for some time now – that is a bad sign as you should have autistic people involved in meaningful roles in every part of your organisation if you are supporting or serving autistic people in any way. Alternatively it could be that they work with parents the most and the parents may prefer person first language. I think that is an even worse sign as although parent’s needs are important, we have to be aware that they often collide with those of their autistic children. As a parent I am fortunate as I have had the benefit of many years of studying and learning about autism – few get that opportunity. I am also autistic, which has been a huge advantage when parenting my autistic children. I always try and keep this in mind when parents tell me I should use ‘person with autism’ about myself. I strongly disagree though.
Shona Murphy 