As a support worker, I am trained to use person-first language when discussing autism, and to refer to clients as being a 'person with autism'. I have been forced to question this, and to consider whether the language we use is beneficial, or whether it could inadvertently be causing harm.
I was on Facebook the other day, and one of my friends shared a post about the autism puzzle piece. In it, it described how the puzzle piece is actually quite problematic, with the jigsaw piece perpetuating the stereotype that autistic people are child-like, that a piece missing implies they need something to ‘fix’ or ‘complete’ them, that the different colours used is a nonsensical design as the pieces would be incorrectly interlocked, that the bright colours used are over-stimulating, and that the puzzle piece is a brand logo for Autism Speaks, who have caused serious harm to the autistic community. This was all information I didn’t know or hadn’t considered, and I was grateful to my friend for sharing this. Underneath the post, I commented, ‘This is an interesting perspective, thank you for sharing this. I do find that referring to neurodiverse people as ‘autistics’ rather than ‘people with autism’ is also problematic, as it keeps the focus on the condition, rather than the individual. It’s something we are trained not to do in support work from day one.’ There was no response to my comment, which didn’t surprise me as my friend tends not to respond to comments such as that, and I forgot all about it.
Last night, I was on Facebook again, and my friend had shared another post. This one was a cartoon, which featured a hypothetical argument around the use of the terms ‘autistic’ and ‘people with autism.’ In one of the panels, the autistic character said, ‘While there are those of us who prefer ‘people with autism,’ the majority of us prefer being called ‘autistic.’’ This intrigued me, not only because it felt like the post was an effort to communicate something to me without being directly confrontational, but also because I realised I had no idea if this is true or not. So, in an attempt to distract myself from the university work I really should’ve been focusing on, I decided to research as to what the reality of the situation was.
This article, by Fiona Churchman, references an experiment undertaken by autistic speaker Chris Bonnello, which had 11,000 responses. Just over half of the autistic people who responded indicated they only use the term ‘autistic person,’ only eleven per cent used the term ‘person with autism,’ while around a quarter of people were happy with either. However, almost half of the non-autistic people with no autistic relatives said they only use ‘person with autism.’ These results were corroborated by a study into which terms should be used to describe autism by Lorcan et. al, which found that ‘the term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents.’
This surprised me somewhat, because what I couldn’t understand is, if this is the reality – and these two studies, one formal, one less formal, suggest it is – then why are support workers trained to say ‘people with autism?’ Both studies show around half of non-autistic people with no autistic family members prefer the term ‘people with autism.’ Is it that people are concerned about upsetting or offending autistic people, and are trying to be politically-correct? Is it that they are trying to separate the neurodivergence from the individual, so as to treat it as a condition that may one day have a cure? Is it an attempt to be nice, to be respectful, or an attempt to be dismissive, and to deny someone’s reality?
I believe most people, at their core, are decent people. I don’t believe that the majority of people are trying to do anything other than be respectful towards the autistic person; in my support worker experience, the training we undergo makes it clear that autism is a difference, not an illness, and that our work should be conducted in a person-centred manner. I think the professional preference for the term ‘person with autism’ is designed with the best of intentions; to focus on the person, not a diagnosis. Of course, there are always dickheads in the world who try to use the terms ‘autistic,’ ‘autism’ and ‘on the spectrum’ in a derogatory manner, but I do believe they are the minority. What concerns me most is that, in these well-intentioned attempts to focus on the person first, the person may actually be feeling dismissed. Autism isn’t just a part of the person; it is the person. By separating the person from the autism, what they are hearing is that this defining feature of who they are is a problem, not just a difference. As the Autism Self-Advocacy Network puts it:
"When we say 'person with autism,' we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word 'with' or 'has.' Ultimately, what we are saying when we say 'person with autism' is that the person would be better off if not Autistic, and that it would have identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.”
While it is not as simple as saying ‘this is the correct term’ or ‘this is the wrong term,’ it is important that autistic people are the ones leading this conversation; indeed, their opinion is the only one that matters. The key is talking to the autistic people you know, finding out what terminology they prefer, and using that when talking to and about them. Telling an autistic person that they should be referring to themselves as a person with autism is, ultimately, really quite rude. You can’t claim to be operating in a people-first manner if you are not putting the person’s wants, needs and desires first, and it is concerning to me that those studies show such a disconnect between the terminology preferred by autistic people and terminology used by professionals. This simply should not be happening.
Several years ago, I underwent an autism assessment. At the end of it, they said they were unable to make a diagnosis one way or the other, and asked me to come back for a second, more detailed assessment to determine whether or not I should be classified as being on the autism spectrum. In the end, I decided not to go to the second assessment, and there were two reasons for this. The first was that I was offered an employment opportunity that involved working all over the country, meaning I would not be able to attend the assessment without great difficulty. The second reason was that, for me, the diagnosis itself had ceased to matter. While waiting the many, many months it takes for the assessment to come around, I had decided in my head that, whatever diagnosis was eventually given to me – and there were a few possibilities at the time, given how poor my mental health was and how difficult it was for me to find my place in the world – I didn’t care anymore. As you can tell from the website name, the only terminology I would accept with regards my brain was the Lawes disorder. Imagine how stupid it would sound to refer to me as a ‘person with Lawes.’ I’m not a person with Lawes, I am Lawes. Many autistic people feel this way about their diagnosis. They aren’t a person with autism, like it’s some sort of burden they have to bear. They are autistic, with all the uniqueness, individuality, brilliance, difficulties and complexities that come with being neurodivergent in a world which isn’t designed for autistics, which isn’t as supportive as it should be and which is already hard enough.
We make the world easier for people by accepting them for who they are, and by understanding that the best way to show our empathy, support and compassion is by being led by them. The other week, I thought I was doing that using people-first language; today, I have learnt that, by the desires of the majority of autistic people participating in those studies, I was wrong. It’s not easy being wrong, especially when you are trying your best to help, to be understanding and to show that you accept the person as an individual. The purpose of me researching this subject last night was to confirm what I already believed; that the terminology I had been trained to use was correct, and that I did not need to change. My research shows that I was wrong, that I do need to change, and that the best of intentions can further perpetuate the challenges autistic people face. Understanding this will make me a better support worker, and a better person in general.
I am grateful to my friend for her posts, because they forced me to make a choice between continuing to accept what I had been taught, or to research the topic for myself and find out the truth. That truth is something I should’ve realised long ago, right back when I made my own determination on what I would’ve accepted for myself. If you are unsure what terminology somebody prefers, ask them, and then listen to the response and act accordingly. Maybe the person you know does prefer person-first language. Maybe, like the majority of autistic respondents to those surveys, they do not. We’ll only find out by asking them, and we’ll only make the world easier for them by respecting their answer.
“It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as ‘a person with autism,’ or ‘an individual with ASD’ demeans who I am because it denies who I am.”
Lydia Brown; Autism Self-Advocacy Network
Identity-First Language – Autism Self-Advocacy Network
Which terms should be used to describe autism? Perspectives from the UK autism community
Should We Say 'with Autism' or 'Autistic'? Here's Why It Matters
'Autistic' or 'has autism'? Why words matter and how to get it right
Watch your language when talking about autism
Autistic person, or person with autism?
Craigness: An account of adult diagnosis of autism spectrum disorder, by ian (payaso de mierda)