Is it ‘with autism’ or ‘Autistic’?

We know that language matters. Our word choice expresses ideas and meanings on the subjects we are speaking about. Therefore, our word choice when discussing the Autistic community can greatly impact your attitudes toward this community.

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). It’s often a ‘hot button’ conversation between identifying and non-identifying people.

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

• The structure of PFL is with the noun (referring to a person) preceding the phrase referring to a disability.
• Examples of PFL include “child with autism” or “person with a disability”.
• 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.

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

• Autism then is not considered part of the child’s identity.
• Instead, the use of PFL is used by the parent in thinking it emphasises their child’s humanity.
• Many parents quote “he/she is so much more than their autism”.

In addition, autism is stigmatised 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 (Gernsbacher, 2017).

• Instead, research is showing that PFL is used more frequently to refer to disabled children than to refer to non-disabled children.
• Furthermore, PFL is most frequently used in reference to children with the most stigmatised disabilities.
• Therefore, the use of PFL is actually having a reverse effect.
• PFL in scholarly writing may be accentuating stigma.

Many Autistic self-advocates and their allies advocate for identity-first language (IFL). Surveys show IFL is preferred by about 95% of autistics.

You can check out a survey by Chris Bonello (Autistic Not Weird) on his webpage here

You can check out another survey here by David Gray Hammond

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

• 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.

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

• In this way, we can better understand that someone is or isn’t Autistic.
• This then translates to the practitioner or therapist role is as support versus ‘treatment’ or ‘curative’.
• If a person is Autistic, you do not then discuss treatment plans to take away their identity or to make them ‘less autistic’.
• The focus is on ways to support an Autistic person’s mental and physical health.

Thank you for learning about the community

Laura Hellfeld

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References

Gernsbacher, M (2017). Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma. The Journal of Child Psychology and Psychiatry, 58(7), 859-861. https://doi.org/10.1111/jcpp.12706