Hello folks! This post is about a topic that is being hotly debated in the community at the moment and which is dividing opinions of autistic people, families and friends of people with autism as well as professionals in the field. The topic I am referring to is language and labels!
You may have noticed that in the sentence immediately following “Hello folks!”, I used 2 different ways of labelling. I used both “autistic people” and “people with autism”. For two very similar sounding phrases, they cause a lot of controversy as they represent ‘identity-first’ language and ‘person-first’ language, respectively. “Why does this matter?” I hear you ask. Well, let me give an example:
I would say to someone “I am a woman” rather than “I am a person with women-ness” if they were to inquire about my gender and/or sex. (In this case they happen to coincide.) Aside from the fact that the latter phrase doesn’t make much grammatical sense, being a woman and so being female is a core part of who I am. It dictates or influences all sorts, from my physical appearance and brain structure, right through to my position in society and how I view myself. In other words, it’s an identity. Of course, if your gender and given sex do not coincide, and so you are not cisgender, then the above may not apply; how you identify and view yourself may not match how your body has grown and presents. For me though, being a woman is something I am and is neither good nor bad but is an integral part of me as a person.
However, if I were to discuss my dessert preferences, I would say “I am a person who likes to eat banoffee pie”, and not “I am a banoffee pie consumer”. As delicious as banoffee pie is, by opting to use the slightly strange but preferable way of using person-first language, I make it clear that banoffee pie enjoyment is not a big part of who I am. I am also aware that how English is structured also influences our use of person vs. identity-first language. I am also sure that any sociologist readers will be able to better explain than I can, that languages evolve depending on what we value and how we perceive things. They might also tell you that how we use language has an influence on how we treat the thing in question. This means that while we are sometimes limited in how we can express ourselves, when we have 2 equally sensible sounding phrases, the one we choose will have a slight impact on how we talk about it and how others react to us talking about it.
So, bringing this back to “autistic person” vs. “person with autism”. My preference, albeit slight, is the use of “autistic person”, as it is something I consider to be a major part of who I am. My ASD is something I consider to be inextricably linked to my personality and affects not only how my brain responds to things, but also how I view myself. It also affects how people treat me, both positively and negatively, as well as my experience living in the world. For that reason, being described as autistic means people are more likely to realise it is something important to me, and not an afterthought.
This being said, it is important to look at both sides of this debate as the person-first language supporters have very valid points. The initial move to “person with autism” was an important one because it meant that people started seeing those with disabilities as humans rather than a list of symptoms. Not only this, but the move to this style of language allowed people to look beyond the impairments to actually think about individual’s strengths. Those in the autistic community today advocate for person-first language because they (rightly!) think that those with ASD are more than just their condition. An autistic person / person with autism is at the end of the day, still a person. Just as neurotypical people vary in pretty much every manor possible, so do the neurodiverse.
While my personal preference is for identity-first language, I completely acknowledge why some people prefer person-first and will often switch between them depending on context. I think the most important thing with this issue is to respect the opinions of the individual. If a person introduces themselves to me as “a person with autism,” then I will do my best to remember this choice and will use that phrase in reference to them. If you are unsure, then the best thing to do is ask. (Preferably at a suitable moment and not when they are having a meltdown or if they are in the middle of giving a speech or something!) Everyone will make mistakes, so if you are a person with a strong preference, then by all means go ahead and correct people who are talking about you, but please don’t get angry at small slip-ups like this as it is honestly a pointless use of your anger. Instead, may I suggest directing it towards oppressive governments, human rights violations or those who fold the pages of books.
So now we have an idea about the general arguments around it, we can have a look at the wider population. I read a very interesting paper on this exact issue called “Which terms should be used to describe autism? Perspectives from the UK autism community” which will be cited and linked at the bottom of this post. For this study, they surveyed 3470 people from the autistic community who fell broadly in the categories of “autistic adults”, “parents of people with autism”, “professionals, including researchers, students and volunteers” and “family members and friends”. They also note that almost all of the respondents said they were of a white ethnic background, and so the study may not accurately represent the views of all those in the community.
I highly recommend settling down with a beverage of your choice and reading through the paper, but I will give you a summary of the findings now:
The overall aim of the survey was to look at preferences between how autism is described by first asking participants to choose various terms that they would use to describe autism from a list provided. They had a few different categories, but the overall findings suggested that the majority of people across the groups endorsed “autism” and “on the autism spectrum”, while “autism spectrum disorder” was also okay. However, the differences start becoming more prevalent when we look at the terms “autistic” and “person with autism” a.k.a. the identity-first vs. person-first language.
“Autistic” was only favoured by 38% of professionals while 61% of autistic adults liked it.
“Person with autism” was preferred by 49% of professionals but only 28% of autistic adults.
The study also looked at the use of the phrase “has autism” and found most endorsed its use. “Has Asperger’s” was also far more preferred than “is Aspergic” which makes sense considering I have never heard that phrase used before. However, they did note that autistic adults were much more likely to use “Aspie” than any of the other categories.
The study then went on to ask people why they preferred certain terms, and the results were very interesting. I have given a randomly selected example from each group below, but I recommend reading them all.
‘Separating the person from their autism is damaging, as it reinforces opinions about autism being a ‘thing’ that can be removed, something that may be unpleasant and unwanted, and something that is not just another aspect of a whole, complete and perfect individual human being. Describing oneself as autistic is an extremely important and positive assertion about oneself, it means that one feels complete and whole as one is’Autistic person
‘I prefer considering autism as a way of seeing the world that we can all learn from and which offers diversity rather than deficit. However, this is at odds with the current system of funding and benefits, which relies on viewing autism as a disability. This represents a conflict’.Professional
‘My son really likes people without autism to have labels too – e.g., neurotypical. It seems fairer to him and helps everyone think positively about autism as difference while helping to explain the disabling effect of operating with autism in a world set up for typical people’.Parent
‘High-functioning autism implies there are few difficulties. Some people without learning difficulties (even with degrees) can also need full time care’.Family member
Now we have looked at both the general arguments and a study, plus my own personal opinion, I think you will agree with me that the outcome is that there is no clear solution. Both sides have valid arguments and much of it is based on context or personal beliefs. I know this isn’t a particularly helpful conclusion so all I will say is just talk to those it affects, be aware of both sides and don’t use high functioning or low functioning. You can draw your own conclusions and decide which one works better for you! As ever, try to be a nice person and I hope you enjoyed this long, long post!
P.s. I know numbers scare some people, so here is a joke to take your mind off it!
A sloth was hanging in his tree when suddenly two snails slithered over and stole his food
When the police arrived, they asked “What happened?”
The sloth replied “they stole my food and then made a quick getaway!”