Why I am not an 'autism parent'

I have lost count of how many times I have read a parent of an autistic child describe themselves as an “autism parent”. Every time it jars. There are several reasons the phrase is wrong, and a couple of them go past irritation into genuine offence, and I would like it to stop.

Who am I to comment? My four children are all neurodivergent, and in all likelihood all four are autistic, though only one has a formal diagnosis. I am ADHD and autistic myself, PDA neurotype, so the effect this language has is not theoretical to me; I live with it. That makes me a parent of autistic children, and an autistic parent. It does not make me an “autism parent”, and I will not accept the label, now or later.

Why do people do this?

I do understand why the phrase catches on. Being a parent is hard work, and raising autistic children brings difficulties of its own. There is real relief in finding other parents whose days look like yours, and people reach for language that puts them in a group; that is how humans are built. I am not disputing any of it.

What I am disputing is what the phrase costs. This is language doing the work of comfort, and the price is paid by autistic people. A comfort that lands on someone else's back is not one I am willing to call acceptable.

Let me take the objections one at a time.

Identity versus person

The argument between identity-first and person-first language should have been settled years ago, and somehow it rumbles on. Ask autistic people and more than 90% say they prefer identity-first.

In case either term is new: identity-first language means “I am autistic”, “they are autistic”, “an autistic person”. Person-first language means “I have autism”, “a person with autism”.

Autism is not a coat you can take off. It is how the whole brain runs, and it is part of who someone is, in the same way that being gay, bi or straight, male, female or non-binary is part of who someone is. Nobody says “a person with non-binary”, or “a person with bisexuality”. I am autistic, non-binary and bisexual.

When the overwhelming majority of a group tells you which words they want, using the other set — unless a particular person has asked you to — is not a neutral position. It is a choice made against them, and it lands as offensive because that is what it is.

Why does this matter here?

Look at what each style puts in the sentence. Identity-first keeps “autistic” on the person. Person-first shifts the weight onto “autism”, which is sensible enough when you are talking about autism in general rather than about one person.

The trouble starts when a parent uses person-first phrasing about themselves. At that point they are not discussing autism in the abstract, and they are not describing their own neurology either. They have picked up the child's identity and worn it. That is incorrect grammatically, incorrect morally, and incorrect ethically.

The role of parents

Start from the plain fact that people are equal. Children are not possessions, and a child's identity does not transfer to the adult raising them. A parent has no claim on it, and certainly no right to borrow it in order to attract sympathy.

That is exactly what happens when someone calls themselves an “autism parent”. The identity has been taken from the child, usually to draw support — support that ought to be going to the child, who is the one with additional needs. Support the child properly and the parent is supported as a consequence, but the child stays at the centre of the picture.

None of this means parents should go without. They need support, they are entitled to it, and I am not arguing otherwise. What I am asking for is honesty about what we are describing. The child is autistic. The adult is the parent, with the same three duties as any other parent: protect this person, care for them, and guide them into adulthood. The duties do not change from family to family. What they demand day to day does, because every child needs something different.

So when the conversation turns to support, the useful questions are these. What does this parent need in order to do the job? What does this child need in order to be safe, cared for — loved without conditions, ideally — and given room to grow? What we should stop doing is talking only about how hard it is for a parent to “have autism in their life”. That is the frame the phrase installs, and it is the wrong way round.

Demonising autism

People usually mean the label kindly. “Autism parent” is offered as a badge, a way of saying: look at what I carry. The difficulty is what the badge is built on. It puts the parent on one side and autism on the other.

Parents get called superheroes for coping with their autistic child, or for clocking up “wins” against autism. That way of talking treats autism as an enemy to be beaten, and treats the beating as heroic.

However heavy a child's needs are, autism is not a separate thing lodged inside them that could be taken out. It is part of who they are. It is neither all bad nor all good, and it is not a fight to be won. Calling someone heroic for defeating autism is calling them heroic for defeating their child.

Centring parents

We all put ourselves in the middle of our own sentences, and as a society we have a long habit of centring the majority. That explains a great deal of careless language. It excuses none of it.

“Man” as the default word for a human being is not acceptable, because it makes maleness the norm and everyone else the exception. Centring non-autistic people in a conversation about autistic people fails in precisely the same way.

Finding other parents in the same position and leaning on them is a sensible thing to do, and I recommend it. Building an identity out of your child's neurology is something else entirely. Your child belongs to a minority group that is still treated badly. You do not.

There is no version of taking on someone else's oppressed identity that comes out well. A white parent of a black child who began calling themselves a “black parent” would be doing the same thing, and would be called out for it, rightly.

Thank you for reading.