I hear many, many parents of autistic children calling themselves “autism parents” and for multiple reasons this is wrong, and offensive, and I want it to stop.
Who am I to comment?
For context, all four of my children are neurodivergent. Probably, all four of them are autistic. One of them is formally diagnosed as Autistic. I am also ADHD/autistic: PDA neurotype so I experience first hand, the impact of this language. I am both the parent of an autistic child (children), and I am an autistic parent, but I will never ever be, nor accept myself being labelled as, an autism parent. Read on to find out why it matters.
Why do people do this?
I can understand that parents with autistic children struggle. It is tough to be a parent and supporting autistic children can present unique and challenging difficulties. I can understand completely needing the support from other parents who share those, or similar experiences, and that humans have a tendency to feel better when they use language to identify them to a group. I do understand those things. The problem is that the way this language is used to do that, is damaging to autistic people, and that makes it automatically not an acceptable way for parents to feel better. Let me explain the issues:
Identity versus person
Sadly the debate over identity and person focused language rages on even though, when polled, over 90% of actually autistic people consistently prefer identity-first language. For anyone new to this, here is what I mean:
Identity-first language (IFL) = I am autistic / they are autistic / autistic person
Person-first language (PFL) = I have autism / they have autism / person with autism
Explaining why this matters could be a whole other blog, but briefly: autism is not something that can be put down, it is how our whole brain works and is part of who we are, just as being gay, bi or straight, male, female or non-binary, is who we are. I am not a person with non-binary, or with bisexuality. I am autistic, non-binary and bisexual. The fact that the huge majority of autistic people (those actually in the minority group) choose this language makes it imperative that this is the language that is used, and makes using the alternative (unless specifically requested to by a specific individual), actually offensive.
Why is this important for this conversation? Notice above that with IFL (preferred), the term autistic is used the majority of the time unless we are talking in the abstract rather than related to the person, and with PFL, the term autism is used. When a parent, or someone talking about a parent uses person-first terms to describe the parent, they are not only using offensive language to the community, they are taking the identity and placing it on the wrong person. They are not using it in the abstract (related in general and not to one specific person). They are taking it and using it for their own purposes. This is grammatically, morally, and ethically, incorrect.
The role of parents
Let’s start with the idea first that all humans are equal. Parents do not own their children, and they are not their children. A child’s identity is not that of the parent, and the parent has no right to use their child’s identity (rather than their own role) to gain sympathy or support. When a parent calls themselves an “autism parent” they are taking over the identity of the child as we have established, and usually they do this to gain sympathy and support that actually needs to be directed to the child. The parent is not the one with additional support needs, the child is. By supporting the child, people and professionals will of course support the parent in their role as well, but the focus needs to be on the autistic child.
I am not saying that parents of autistic children do not need or deserve support in their own right. I am saying we must make sure that the way we talk about that is fair. The child is autistic, and their parent, as with any other child, is responsible to perform their parental role: to protect the child, to care for the child, and to guide the child into adulthood. This role is the same for all parents, though what is needed to perform that role is different for every parent according to the needs of their child.
Therefore, when we talk about parents and the levels of support they need, we must talk about what the parent needs to perform their role, or talk about what the child needs for them to be protected, cared for (ideally loved unconditionally), and developed. What parents and professionals must stop doing, is talking only about how hard it is for parents to “have autism in their lives”, or how much more challenging it is to have an autistic child, which is what happens when we use the term “autism parent”.
The term “autism parent” is often used with the intention of empowering the parent. Whilst that sounds like a good thing, the way it is done with this language does that by pitting the parent against autism. Talking about parents being “super-heroes” for being able to handle their autistic child, or for counting “wins” against autism, which is regularly what self-proclaimed autism-parents do, demonises autism as a wholly negative thing that needs overcoming and defeating, and that their conquering of it is ideal or heroic. Regardless of how intensive the needs of the child, autism, or being autistic, is an inherent part of who the child is. It is neither wholly negative, nor wholly positive, but it is fundamental to their identity, and suggesting this needs to be defeated, or you are heroic for winning against it, is to glorify defeating your child.
As individuals it is common for us to centre our language around ourselves, and as a society we have a tendency to centre our conversations around majority groups (oppressors) through the language we use. It is common across diversity but that does not make it ok. Whilst it is not ok for “man” or “he” to be the default term for all human beings regardless of their gender, because it centres maleness as the default and norm, ignoring all other people, it is equally not ok to centre non-autistic people in conversations that are about autistic people.
Joining a group of other parents of autistic children to gain support for yourself is completely understandable and acceptable; in fact I recommend this type of peer to peer support. But creating an identity based on your child’s neurology is not ok, because your child, and not you, are in an oppressed minority group. Benefitting from the identity of people in minority groups is not ok. It would be like being white, having a black child, and calling yourself a black parent. It is wrong and offensive.
Thank you for reading.
Written by Emily Wilding Fackrell
Neurodivergent activist, writer and academic, and parent of four children.