Q. I was of the belief that the right thing to say these days is “my autistic daughter” instead of “my daughter with autism” but someone pulled me up for it yesterday. There was also someone on a huge local Facebook group saying that writing “my L3 ASD daughter” is really bad. Is there a right and wrong way? What is best?
Mum of daughter aged 8-13
A.
This is such a great question, because it actually addresses a handful of separate issues. Long story short, I would suggest that the phrasing you are using – “my autistic daughter” – actually is best, and would be seen as such by your daughter’s peers.
Long story, well, long, however…
Person First Language
PFL is designed to put the person first, in order to clearly communicate that their diagnosis is something they have, not something they are. When it comes to many negative diagnoses, this works well and aids the prevention of marginalisation and stigma. For example, “a person with alcoholism” sounds like – as it is – a person battling a condition; whereas “an alcoholic” sounds more judgemental, and like a permanent label that comes with all kinds of negative assumptions.
However, when it comes to autism, not only are many neurodivergent people moving away from the word “diagnosis” and towards “confirmation” (or something similar), there is a significant movement within the neurodivergent community where autistic is something we are, and not something we have.
We are autistic. We don’t live with autism.
It isn’t a disease, or a condition to be overcome. Many of us believe it is an integral part of who we are, and something to be acknowledged and celebrated as much as any other aspect of what makes us who we are.
I don’t live with autism, because I actually live with my family
Summer Farrelly, Autistic Advocate and Animal Therapies Ambassador
Deaf Community
The Deaf (note the capital D) Community has been doing this for decades. People who are Deaf (opposed to deaf) acknowledge their deafness – of whatever degree – as part of their experience as a human, and embrace what others might see as a disability.
This doesn’t mean many of them don’t choose to use hearing aids, or have cochlear implants, but simply that they are accepting of their deafness as part of themselves. People within this community are appropriately called “a Deaf person”, whereas deaf people outside this community tend to prefer to be called “a person with a hearing impairment”. (The most appropriate terminology here is dependent on the country the people live in).
Like the Deaf community, autistic people have embraced their neurodivergence as a crucial aspect of self, so don’t feel the need for person-first language.
ASD
The DSM-5 refers to autism as “Autism Spectrum Disorder”. I’m sure you can appreciate why people who have rejected person-first language in order to claim their autism as part of their existence wouldn’t be particularly happy with the world “disorder” being included. There is generally movement away from using “ASD” and instead simply using the word “autism”, outside of the diagnostic world.
Autism is a neurotype, not a disorder. As such, calling your child “my ASD daughter” doesn’t sit well at all.
Levels
Levels are tricky. In some ways, they’re a good indicator of how much support, or what degree of accommodations, an autistic person may need in order to feel happy, to function in society, and to prevent mental health issues.
However, levels are primarily defined during assessment based on the impact the autistic person has on the neurotypical world, not the other way around.
For example, a person who masks well, can hold down a job, has a partner, can force eye contact, is verbal, but takes high levels of antidepressants and anti anxiety medication, would likely be “diagnosed” as being a Level 1. Minimal support needed. Because they’re functioning, right? Just like the “normal people”. So they don’t need much in the way of support or additional services, according to medical professionals. The depression and anxiety is accepted as part of their neurology, rather than seen as a consequence of achieving all the other things mentioned.
On the flipside, a person who experiences situational mutism, doesn’t sustain eye contact, stims in public, lives with their elderly parents, and has a job but wears ear defenders at their desk, but is not on any medication because they have sound mental health, would probably be considered a Level 2. Frankly, because they’re acting autistic. As a Level 2 would be eligible for NDIS funding in Australia, because they would be perceived as requiring therapies, whereas the first person would not.
Levels frequently disregard who actually needs therapies, and who is simply not acting neurotypically in public. This is not neuroaffirming, or appropriate.
So while saying “my L2 daughter” can be an intended indicator to health professionals, or other parents of autistic children, as to how not-neurotypical your child appears, it’s not a particularly accurate or healthy label for autistic people themselves.
That said, some autistic people do choose to use their levels as a means of expressing how difficult masking is, or how they’re perceived by others, and they have every right to do so.
All in all, I would suggest that the majority of neuroaffirming and/or neurodivergent people would agree “my autistic daughter” is your best option.
And if you see someone else doing differently? Neurodivergent people have every right to use the terminology for themselves that they choose. Some will want to distance themselves from their autism, so will prefer people-first language. Some will want to express an aspect of themselves that is best explained using the Levels system. Do not judge them for this, even if their own language isn’t something you would use regarding your daughter, or hope she would use for herself.
However, if you see a neurotypical person – particularly parents of autistic kids – saying “my ASD kid” or “my kid with autism”, consider gently educating them. People can’t know they’ve got it wrong if no-one ever tells them!