the language of identity, or “I am not an autism parent”

I think it is funny, in an ironic way, that so many people try to tell us how to identify and refer to ourselves. They say we shouldn’t use identity first language when we say we are autistic. We should say we are people with autism because we are people first.

But I know I am a person and it seems odd to me that they need me to remind them when I talk about myself.

And then they use our identity to refer to themselves. They say they are an autism parent or an autism family, placing autism first in their identity even though they aren’t autistic, when they are explaining why they should get sympathy over how hard their life is because a family member is autistic.

When the double standard is pointed out they justify their use of our identity as theirs by saying they are just trying to be understood and explain to others so they will understand what their life is like. But there are other ways to easily do that. There are ways that are more effective, considering the range of erroneous beliefs and misconceptions about autism that abound.

I am not an “autism parent”. I am a parent.
I do not parent autism. I parent my children.
Some of my children have sensory sensitivities, some have sleep challenges, some have difficulty in social situations, some need support with looking after themselves, some need help with emotional regulation. I meet each of their individual needs to the best of my ability, no matter what they are.

I am not a “parent with autism”. I am an autistic parent.
I don’t carry autism with me as an added extra. It is part of who I am.
I experience sensory, communication, sleep and executive function challenges. I am strong, persistent, and compassionate. Being autistic adds strength to the way I parent.

My children are not “children with autism”. They are autistic children.
My children don’t have a better version of themselves hiding underneath their autism.
It is integral to who they are and they are amazing just as they are- fun, funny, energetic, curious, determined, resourceful, empathetic and smart.

We are not an “autism family”. We are a family.
Some of us are autistic. Some of us aren’t.
We are noisy, diverse, caring, messy, loyal, neurodivergent, proud and happy. Just like so many other families out there. All the members of our family are valuable, and we each have our own identities without having to claim the identity of anyone else to get sympathy from others.




14 thoughts on “the language of identity, or “I am not an autism parent”

  1. My daughter and I have an incredibly strong relationship, mostly because we are both autistic and so understand each other much, much better than most of the other people in our lives. It’s brought us very close, closer even than a typical mother and daughter, and there is a great comfort in knowing that there is somebody there who implicitly understands your experiences and feelings; how you react to situations.

  2. I’m an autistic parent to an autistic child. AND my son’s challenges (which are not limited to autism) absolutely do affect my identity as his mother and as a person. They shape most aspects of my life, in ways both positive and negative. It’s not seeking sympathy to be honest about that.

    1. OK. But I notice you said you are an autistic parent to an autistic child- not that you are an autism parent. You used autistic as your identity, not his autism as your identity. My article is about that- the language used. And, although I agree with you that parenting does shape our lives and identities, pretty consistently people who do use the language of their kids identity as part of their own are looking for sympathy.

      1. I’m still not seeing why the language is problematic. It’s like “special needs mom” – however one feels about the term “special needs”, it’s a kind of shorthand. It means that your parenting involves IEP meetings, advocates, therapies, appointments with multiple specialists, social workers, in some cases medical equipment, PECS, AAC, Medicaid, SSI, and other things specific to disability. That’s an experience that can be isolating, and can also draw together parents who have these things in common.

        I know mothers whose children have g-tubes who’ll use the term “tubie mom”. They are not looking for sympathy or defining themselves based on the fact that their child has a feeding tube; it’s a shorthand for everything involved in feeding their child, which is very different from how most people feed children, and involves a lot of specialized knowledge and interaction with the medical community. I don’t see how “autism mom” is different.

        1. Yes, I know what parenting disabled kids is like.
          You’ve read my article. You know I disagree with you. You won’t be chaining my mind with your arguing, and I’m pretty sure you aren’t open to thinking differently about it even if I rephrase was I’ve already said. But thanks for your comments.

  3. I’m an autistic who wonders why I never get a straight answer to the question: “ Why do so many self-proclaimed ‘autism parents’ revile the phrase ‘autistic parent’ … or ‘autistic child/autistic person/autistic ______[ anyone]? They tell us that it’s because “autistic person” doesn’t put the noun “person” (or “parent,” or whatever) in front of the adjective … but neither does “autism parent,” and they love that phrase SO much that they revile anyone who doesn’t love it too. Why, please, is modifier-before-noun — normal English word-order — permitted for them and forbidden for us?

  4. When I refer to myself as an autism parent, I am saying it in that way to identify with other moms who have children on the spectrum . Because parenting a child with autism IS very different than parenting a NT child and we often feel very misunderstood and isolated because of the lack if understanding from others so other autism parents are really the only ones who get that. But if we didnt identify ourselve in some way .. we would have no way of finding each other.

    1. You could say you are the parent of an autistic child. That way your identity as a parent is represent and your childs identity as autistic is represented.

      And please don’t try to explain to me about parent autistic kids, or non-autistic kids. I am doing both. I know what it is like.

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