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Helping Nannies to Understand, Is it ‘with autism’ or ‘Autistic’?

Hello, I’m Laura

I am an independent Nurse and Sleep Consultant at ‘Neurodivergent Nurse Consulting’. My work specialises in supporting neurodivergent (ND) people; many of the young people I support are Autistic.

My mini-bio:

I am an independent and freelance Nurse Consultant supporting our Neurodivergent community members.

I’m an Autistic, PDA and ADHD Health care professional, consultant and advocate. My education includes a Masters in Nursing (RN, MSN), Public Health Nursing (PHN) licensure, and a certified Sleep Consultant.

More recently I have connected with Army of Nannies and we are wanting to create resources for Nannies to learn about the Autistic community and feel confident in taking on childcare of an Autistic young person.

Alt text: A wooden floor with multi-coloured blocks in the foreground. The wooden blocks have letters on each one and are lined up to spell ‘childcare’ and ‘abc’. In the background is a pair of black and white shoes, coloured pencils and a green notebook.

In our first blog together, ‘The Questions to Ask Before Nannying an Autistic Child’ (https://www.armyofnannies.com/blog), we discussed the top points to explore before stepping into a nanny role of an Autistic young person.

We thought that perhaps we can add another foundational piece. Sometimes Nannies say that they are not sure what language to be using about an Autistic child and therefore are nervous about saying the wrong thing.

Getting the language right: How this post will help you

This blog will help guide you through what is often the confusing language about the Autistic community.

The goal is to help you feel more confident in joining conversations about nannying for Autistic children.

Alt text: Image of a printed page, zoomed in and with black text at an angle. The word ‘Language’ is highlighted in green.

Getting the language right: PFL & IFL explained

You may notice as you listen and read more about neurodivergent communities that the discourse may use person-first language (PFL) or identity-first language (IFL).

Neurodivergent: a non-medical umbrella tern to describe people with a variation in thinking and processing information that diverges from a societal expectation

Examples of Neurodivergent communities are — Dyslexics, Dyspraxics, ADHDers, and Tourette’s Syndrome.

Person-first language (PFL) was created with the intention of being an equalizer and to be applied to everyone.

o The structure of PFL is with the noun (referring to a person) preceding the phrase referring to a disability.

o Examples of PFL include “child with autism” or “person with a disability”.

o This style of language is common among scholarly and medical writing.

Many professionals who work with Autistic people, also tend to use PFL.

They may refer to an Autistic child as ‘a child with ASD’ or say I work with ‘people who have autism’. Their language likely comes from the language exemplified in scholarly writing.

As you can imagine, the language that a practitioner or therapist uses greatly influences the language that the Autistic person or carer of an Autistic person uses. The professional holds a very influential position.

This is often how parents and carers view Nannies – childcare and child development experts. How you speak about the children in your care is influential on the family.

Alt text: A person is sat on the ground wearing a white top and dark jeans and their face is smiling and looking downward at a young child. They are showing a young child a yellow toy. Another child is sitting in the adult’s lap and is playing with a building block.

Some parents also choose PFL or use PFL based on the language that is role modelled around them.

o Autism then is not considered part of the child’s identity.

o Instead, the use of PFL is used by the parent in thinking it emphasizes their child’s humanity.

o Many parents quote “he/she is so much more than their autism”.

Getting the language right: Making it less scary!

In addition, autism is stigmatized and even referred to in society as the ‘a’ word. Society has built autism up as scary. Therefore, it can be difficult for people to think about the discussion of autism involving their family.

Furthermore, it can be hard for parents to accept a diagnosis that includes the term ‘disorder’ and autism is incorrectly listed in texts of mental-health disease. Many parents of Autistic children do not think of their child as diseased or having a disorder. Those terms have negative connotations and again create autism as something to be afraid of.

Using PFL creates some space between the child and autism.

While scholarly and medical writing set out with the intention of everyone being referred to with PFL, this has not happened.

o Instead, research is showing that PFL is used more frequently to refer to disabled children than to refer to non-disabled children.

o Furthermore, PFL is most frequently used in reference to children with the most stigmatized disabilities.

o Therefore, the use of PFL is actually having a reverse effect.

o PFL in scholarly writing may be accentuating stigma.

“Why do others have to be reminded of my humanity? Isn’t that inherent.” Autistic criticism of PFL

Many Autistic self-advocates and their allies advocate for identity-first language (IFL).

o Surveys show IFL is preferred by about 95–100% of Autistics.

Please note that not all Autistics would have access to these online surveys

o In IFL, the disability serves as an adjective and precedes the personhood-noun.

o Examples of IFL include “Autistic child” or “Disabled person”.

Identity-first language understands and respects how autism is an inherent part of someone’s identity. This is similar to how society refers to a “gay man” versus “a man with gayness” or “a woman” versus “a person with womanliness”.

It is impossible to separate a person from their identities. It is impossible to separate a person’s experience from their identity.

o We interact with others and the environment from our perspective which is a collection of our identities.

One cannot respect an Autistic person without recognising and respecting their Autistic identity.

Please note, that it is always appropriate to use the terms and language about someone that they self-advocate for. We deserve to describe ourselves how we see fits.

The use of IFL reframes the discourse about autism as a disorder to validating the Autistic identity.

o In this way, we can better understand that someone is or isn’t Autistic.

o This then translates to a Nanny learning about Autistic traits and culture in order to better care for an Autistic young person

o When childcare is in line with Autistic traits and culture, the Autistic young person can be best supported to learn, have fun and thrive.

Keep the learning going

To learn more about Autistic traits and culture, you can follow self-advocates like me and many of my colleagues who are wonderfully diverse.

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