The use of identity-first language to describe our Autistic selves, or be described by non-autistic people, is not up for debate with non-autistic people. But time and again it is demanded that we Autistic people – not “people with autism spectrum disorder” – provide “evidence” for the use of identity-first over person-first language.
Even more frustratingly – angering even – is that professionals do not expect the same level of “evidence” for the use of person-first language when interacting with Autistic people.
And so, find some resources here to demonstrate both preference for identity-first language, but more importantly the psychologically protective properties of being an Autistic person, not a “person with autism [spectrum disorder]”.
Some people around young Autistic people will say they asked their young person about their preference – to be referred to as an Autistic person, or a “person with autism [spectrum disorder]”, stating that they went with their young person’s preference for person-first language – or even that the young person didn’t care about it.
The above scenario is not an acceptable reason to ignore the politics of a young persons’ life. Absolutely language should not be forced on the minority in question – but that does not preclude you from learning about the importance – the psychological and political importance – of identity-first versus person-first language regarding yourself, your young person, the people in your care, in your class, in your employment.
And there is growing evidence that humanising us via identity-first language and the surrounding, far greater Autistic community and cultural narrative, actually improves psychological wellbeing of Autistic people – a population where the greatest cause of death is suicide. And so, any help our community can get to reduce early deaths and a life of prejudice and discrimination should be deeply and critically considered.
That you were taught that person-first language is what you should use is no longer an acceptable response when told otherwise. As Dr Nick Walker says: “Sentences that start “person-first language is what I was taught to use” should end with “but now I know better & will never use it again”.
Be the change you want to see, importantly, be the change we desperately need. Thank you.
These psychologically protective properties are somewhat demonstrated in Chris Bonnello of Autistic not Weird‘s latest survey with 11,212 respondents (7,491 of whom were Autistic, including non-speaking Autistic people), which demonstrated that those who identified as Autistic were more likely to like being Autistic, compared to those who considered themselves to be “people with autism”:
A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person)…
Question: Is identifying with social groups beneficial to people’s health and wellbeing? Whilst marking undergrad essays on this question back in 2020 – my mind began to wander, as it is prone to do, to Autistic things. Although my PhD was in the field of social psychology – where I attempted to reduce mental health stigma with the neurodiversity narrative – I had become so engrossed in my little sliver of the field I forgot about other social psychological theories and approaches. I researched the references my students were citing and made a short Twitter thread of my thoughts regarding the psychologically important difference between being a “person with autism” and an Autistic person. The difference between belonging to a stigmatised group, and the social cure properties of strongly identifying with an Autistic identity…article continued here.
It is no secret to my listeners, readers and friends that in my experience in working with PDA families, I have come to loathe one, simple question: “How do I get my child to X?” Now on the surface, this question may seem harmless and reasonable, but let me explain to you why I find it so bothersome, and why it could potentially be damaging.
PDA (which stands for “Pathological (horrible word)” Demand Avoidance is understood by most as an ‘anxiety-driven need to be in control’. A demand represents the venom which drips from the fangs of a viper. A demand is a dangerous agent that poses a direct threat to a PDA person’s sense of freedom – our most essential nutrient. When you are PDA, feeling free or in control takes precedence over anything else. If control or freedom are lost, the PDA person will resort to most anything to regain it. I describe the PDA person’s relationship to control and freedom as being comparable to that of a mother and her child, in the sense that it is maternal. Losing control can feel like losing something you need to protect and keep an eye on at all times.
Asking the question “How do I get my child to X?” isn’t only indicative of the parent consciously or unconsciously trying to seize control from the child, but it also illustrates that there is an emotional and psychological gulf between the parent and their PDA child. Being PDA means that in order to cooperate with a person, we have to be on the same level as them. It is for this reason that establishing a rapport and presenting oneself as the child’s equal must be the go-to approach. Any attempts by an adult – the parent or teacher, et cetera – to impose upon the child an instruction, or authority in general, will be met with resistance. The PDA child is unable to cooperate with a person who has not yet earnt their trust. Furthermore, the idea of fixed roles – teacher, doctor, and even parent – can be perplexing. If an authority figure presents themselves as the child’s superior and keeps their role at the fore, this in effect conceals a person’s humanness. Who could possibly comply with a non-human presenting itself as your superior who wishes to steal your life-force?
I also find the question “How do I get my child to do X?” problematic in the sense that it suggests there is little or no interest on the part of the parent in accessing or learning more about their PDA child’s world – which would be a preliminary stage in meeting the child on their level. This is an example of invalidating the child’s experience. The PDA child intuitively knows who is or isn’t on their level. It is my personal belief that this in part marks the inception of the positive or negative PDA social obsession – which is, for the record, part of the diagnostic criteria.
For example, when I meet a new person, I instinctively start trying to work out whether or not there can be harmony between us. I am on the lookout for absentmindedness, limited capacity to understand autism, PDA and neurodiversity, and self-centredness. If either of these things exist, I am on high alert. I know I have to be on the same level as people in order to cooperate with them or form relationships with them, so if there exists an unbridgeable gulf between myself and another, I either want to find quick and efficient ways of reconciling my world with theirs, clown around and be silly, or just stay away completely.
Despite everything I have said thus far, I am aware that sometimes parents phrase a question in such a way due to it being, say, a non-negotiable. Even still, there are alternatives to asking, “How do I get my child to X?” I often encourage parents to become entrepreneurial – to see themselves as selling a product. As opposed to being dictatorial – ordering their child to do something. My PDA law is inspiration over instruction – you cannot push us into anything, but we can be lured in.
If a parent can neutrally convey or demonstrate the intrinsic value of an activity, ritual or practise, and so long as we are aware that doing something will not lead to loss of control or diminishing returns, there isn’t a reason why the thing can’t be done. Reciprocity isn’t only important in personal relationships; it’s also important when it comes to a PDA person’s activities too. If taking a step forward means that control is lost and no benefit reaped, then the activity itself is flawed and inherently demanding. When it comes to PDA, there has to be a compelling ‘what’s in it for me?’ factor. I always say that I don’t write books or blogs, I don’t give talks and I don’t make YouTube videos. I BECOME the article I am writing. I BECOME the talk I am giving, and I BECOME the YouTube video I am recording. I don’t DO anything – if I am doing something, this implies separation between myself and the thing I intend to do, leaving room for a demand to wiggle its way in. If I become the physical embodiment of the thing I intend to do, there is no separation, and thus the thing becomes possible, not because I do it but because I become it. This process can partly be described as a flow state – becoming so immersed in an activity that you become one with it.
It is important to note that this is not the same as offering a reward – reward and punishment systems never works for PDA, as remaining in control is the greatest reward of all. Rewards set and defined by parents for good behaviour are forms of extrinsic motivation, whereas a PDA child being drawn to something on the basis they have ascertained the thing’s intrinsic value is a form of intrinsic motivation – the only way a PDA child CAN be motivated.
Instead of asking “how do I get my child to X?” perhaps some better questions would be “is X really that important?” “What is the true meaning of why we do X?” “Why does my child avoid X?” “What could it be about X that my child finds so unsafe?” These questions are less anxiety-provoking for me because they succeed in challenging the notion of X, and at no point does the child’s experience get invalidated, because there is a genuine desire to understand the child’s world, and not just an attempt to get them to comply.
Prof Peter Kinderman , someone I have had the pleasure of meeting, is a kind and empathetic professor of Clinical Psychology at the University of Liverpool. His work seeks to address the real causes of psychological distress, placing the causes more accurately outside of a persons head and more firmly in social contexts.
This is particularly important when we consider the psychological distress many Autistic and neurodivergent people experience, where our neurodevelopmental difference is blamed for the psychological distress we experience, instead of placing the onus on the environment that led to the distress.
“Dr Peter Kinderman argues that mental emotional distress is not a sign of illness but a symptom of social causes and pressure. Depression, anxiety and even schizophrenia can be serious and debilitating experiences for people; but Dr Kinderman says the causes of these symptoms will not be found inside the brain but rather outside the person. Unemployment, bullying, child abuse, these are often the causes of mental distress – and the treatment he prescribes is for all of us to take greater social responsibility to address the situation…”
One of the most important pieces of research for the Autistic community, and to educate non-autistic people, demonstrates that Autistic people do not have deficits in social communication, but that there is a translation issue between Autistic and non-autistic people (known as the Double Empathy problem by Dr Damian Milton – an Autistic academic). This important piece of research by Dr Crompton shows that communication between Autistic people is stronger than between mixed neuro type groups – Autistic and non-autistic groups.
This has implications such as not placing the onus on Autistic people having a problem or deficit, and asking that non-autistic people work to learn the language and communication of Autistic people.
See here a short video explaining the study, and the video below of Jac den Houting discussing the double empathy problem, as well as the neurodiversity paradigm to replace the medical paradigm.