Does Language Matter?
Are we autistic, or do we have autism?
A reflection on autism language, dignity, and human worth. What begins as a discussion of identity-first language becomes a deeper question: who deserves care, belonging, and recognition when productivity is no longer the measure?
I am a huge fan of Erich Fromm. I have spent years reading his books, lectures, and letters, following his attempts to understand identity, freedom, belonging, and what it means to be fully human. Growing up in a Marxist household, I found his humanism familiar territory. He was interested in the person before the category, the life before the system. Even now, I find myself returning to his work whenever I encounter questions that seem political on the surface but are ultimately about dignity.
One of those questions arrived recently through the work of Monique Botha and colleagues, whose article asked a deceptively simple question: does language matter?
More specifically, does it matter whether we say autistic person or person with autism?
Here’s the abstract:
In response to Vivanti’s ‘Ask The Editor…’ paper [Journal of Autism and Developmental Disorders, 50(2), 691–693], we argue that the use of language in autism research has material consequences for autistic people including stigmatisation, dehumanisation, and violence. Further, that the debate in the use of person-first language versus identity-first language should centre first and foremost on the needs, autonomy, and rights of autistic people, so in to preserve their rights to self-determination. Lastly, we provide directions for future research.
The article argues that it does. Language shapes how autistic people are understood, how research is conducted, and how policy is developed. The words chosen by professionals are not neutral descriptions floating harmlessly above reality. They have consequences. They influence who is listened to, who is believed, who is accommodated, and who is permitted to define their own experience.
As I was reading the paper, however, I found my attention drifting toward a larger question.
What becomes of us when we are no longer useful?
That question has been following me around for some time.
As I process the gradual decline of an elder who once played an important role in my life, I keep finding myself pulled back toward old memories. One summer, whilst I was working in the city and staying with my grandmother, I struggled to find steady employment. Money was scarce. I was doing what many young adults do—trying to assemble a life from temporary jobs, uncertain opportunities, and a great deal of hope.
The elder came looking for rent.
Not my grandmother.
Him.
Rent for the room I occupied in her house.
When I explained that I did not have enough money, he quoted 2 Thessalonians 3:10: “If anyone is not willing to work, let him not eat.”
The distinction between unwilling and unable disappeared instantly.
Family did not seem to matter.
Circumstance did not seem to matter.
Need certainly did not matter.
I sold what possessions I could and paid him.
The memory has remained with me for decades, not because of the money but because of what it revealed. Some people understand human worth through contribution. Through productivity. Through labour performed and value generated. If you can work, you deserve to eat. If you cannot, your claim upon the community becomes negotiable.
At the time, I thought I was learning something about family.
Later, I realised I was learning something about civilisation.
The elder is now approaching the end of his life. He requires care in ways he never once imagined when he was younger. His needs have multiplied. His independence has narrowed. Like all of us, he has become more dependent upon the goodwill of others than he once believed possible.
Time has a way of rearranging certainty.
And so I find myself returning to the question that sat quietly beneath Botha’s article.
What becomes of the vulnerable?
What becomes of disabled people?
What becomes of autistic people?
What becomes of any of us when our ability to produce can no longer be used as evidence that we deserve to remain here?
The state, in its many forms, insists that safety nets exist. Yet every year I meet people who cannot find them. Families become exhausted. Resources disappear. Support evaporates. The rhetoric of care often proves much easier to fund in speeches than in reality.
Perhaps that is why the language matters.
Not because words are magical.
Because words reveal assumptions.
The way we speak about people tells us what we believe about them.
The categories we choose reveal who belongs, who matters, and who is expected to justify their existence.
And autistic people, perhaps more than most, remember what those assumptions feel like when they land.
—June 2026 Update—
I reread this piece recently and was struck by how much of my later writing was already present inside it, even though I lacked the language to recognise it at the time.
When I wrote this essay, I believed I was writing about autism language. About identity-first language versus person-first language. About whether autistic people should be described as autistic people or as people with autism. The article by Monique Botha and colleagues provided the immediate catalyst, but reading it now, I think I was reaching toward something much larger.
I think I was writing about recognition.
Over the past four years, I have written about autism, gestalt language processing, disability, accommodation, education, gender, transition, diagnosis, administration, and belonging. The subjects changed. The pattern did not. Again and again, I found myself returning to the same observation: the experience arrives first. The category arrives later. Yet institutions routinely reverse the order. They begin with the category and then attempt to fit the life inside it.
I have come to believe that much of the suffering experienced by marginalised people emerges from that reversal.
The diagnosis becomes more visible than the person. The label becomes more visible than the life. The administrative category becomes more visible than the reality it was created to describe.
The map becomes more important than the territory.
Much of my work since 2022 has been an attempt to push back against that reduction. To argue, in different ways and from different directions, that the whole exists before the parts. That people are larger than their descriptions. That understanding should begin with lived experience rather than forcing lived experience to conform to pre-existing frameworks.
I am also struck by something else.
The elder I wrote about in this piece died one week after it was published.
At the time, I had no idea I was writing what would become my final reflection on our relationship. Looking back now, I am less interested in him as an individual than in the worldview he represented. The incident stayed with me for decades not because of the money involved, but because it revealed an assumption that I have encountered repeatedly throughout my life: that human worth is tied to productivity.
If you can contribute, you belong.
If you cannot contribute, your place becomes negotiable.
I have seen that assumption appear in families, schools, workplaces, governments, healthcare systems, and disability services. It appears whenever support is treated as something that must be earned rather than something that exists because human beings are inherently worthy of care.
Perhaps that is why the language question never felt trivial to me.
Language is rarely just language.
The words people choose reveal the assumptions they are carrying. They reveal who is considered fully human, who is considered a burden, who is expected to justify their existence, and who is permitted to simply exist without explanation.
When people argue about autism language, disability language, gender language, or any other language of human difference, they often believe they are arguing about terminology.
I am no longer convinced that is true.
I think they are arguing about recognition.
About authority.
About whose description of reality will be accepted.
About who gets to name themselves and who must accept being named by others.
The older I get, the less interested I am in winning those arguments and the more interested I am in understanding what they reveal.
The words were never the thing itself.
The words were evidence.
Evidence of deeper beliefs about dignity, dependency, belonging, and humanity.
Reading this essay four years later, I find that the original question still matters. Does language matter?
Yes.
Not because words are magical.
Because words reveal what we believe long before we are willing to admit it.