Identity-first language and autism functioning labels

These are some of my thoughts on identity-first language and autism functioning labels as an autistic person.

[Note: I obviously don’t speak for all autistic people, these are just my thoughts and opinions, and other opinions that I have seen other autistic people express online.]

The vast majority of autistic people prefer identity-first language over person-first language (i.e. autistic person rather than person with autism). Obviously there are some autistic people who prefer person-first language, and we should respect that, but most autistic people prefer identity-first language. There are several different reasons for this.

One reason is that the term ‘person with autism’ implies we can be separated from our autism, which we obviously can’t. It also implies that our autism is only a small part of us, and that it only affects us sometimes, when it is actually a big part of us and of many autistic people’s identity, and it affects us all the time. Many autistic people find using identity-first language empowering.

In addition, person-first language is not used for other traits. For example: you wouldn’t say ‘a person with tallness’, you’d say ‘a tall person’, and you wouldn’t say ‘a person with youth’, you’d say ‘a young person’, so it doesn’t really make sense to say ‘a person with autism’ instead of ‘an autistic person’.

However, person-first language is used to refer to people with illnesses or health problems. For example, you’d say someone was a ‘person with cancer’ rather than a ‘cancerous person’. Referring to autistic people in the same way implies that autism is an illness and an inherently bad thing, which is ableist. It also gives the impression that it is unfortunate that the person is autistic.

Another reason why many autistic people dislike person-first language is because it is often forced on us by neurotypical people, who say that we shouldn’t let our autism define us. In reality, for many autistic people, autism is a big part of our identity, and neurotypical people shouldn’t control how we label ourselves.

Autism functioning labels (i.e. high-functioning and low-functioning) are another area of debate and, in my opinion, are completely unnecessary. The main reason for this is that they cause unnecessary division within the autistic community. Functioning labels are often used to silence autistic people when they are talking about issues related to autism. ‘High functioning’ autistic people are told that they aren’t autistic enough to speak about these issues, and ‘low functioning’ autistic people are told that they don’t know what they are talking about and they aren’t taken seriously. For example, when I’ve spoken to some of my family members about my struggles with being autistic, I’ve been told that the things I was talking about only affect ‘more severely autistic people’ than me. Labelling someone as high-functioning dismisses their difficulties, and labelling someone as low-functioning portrays them as a burden and dismisses their abilities.

Another big issue with functioning labels is that they are completely subjective; there is no specific criteria to define whether someone is high or low functioning. Autistic people’s ability to ‘function’ can also fluctuate from day to day, depending on factors such as environment, emotions and accommodations. Therefore it doesn’t make sense to label someone as high or low functioning, as they could be ‘high functioning’ one day and ‘low functioning’ the next day.

Functioning labels are based on how neurotypical people view a particular autistic person, rather than that person’s own experience. Functioning labels often define how well the person masks their autism, and their ability to fit in and appear neurotypical. High-functioning autistic people are often viewed as more ‘convenient’ and ‘socially acceptable’ by society, as they are better able to mask their autism.

Functioning labels are often used by neurotypical people to justify not giving someone enough support because they are ‘high-functioning’. Just because someone appears to be ‘high-functioning’ and is able to mask their autism doesn’t mean they don’t struggle, so they should still be given support. Labelling someone as high-functioning also shows that they are expected to function like a neurotypical person, which holds them to often unachievable standards, which can cause a lot of anxiety.

In addition, you wouldn’t say that a neurotypical person is high or low functioning, so it doesn’t make sense to use these labels for autistic people. Rather than saying that an autistic person is ‘high-functioning’ or ‘low-functioning’, just say that they’re autistic.

People often use ‘low-functioning’ to mean non-verbal, in this case it would make more sense and would be more accurate to just say that that person is non-verbal. If you are talking specifically about a particular autistic person, instead of saying that they are high or low functioning, state their specific needs. For example, rather than saying ‘Bob has low-functioning autism’, say ‘Bob is non-verbal and goes to a special education school’. This makes the specific person’s needs clearer, whereas if you said they were low functioning, that would be much more subjective and doesn’t give a very clear idea of that person’s needs.

A better and more specific representation of the differences between different autistic people, which I saw online, is this diagram, which has a few specific autistic traits, and different levels for each one. [The words ‘abnormal’ and ‘poor’ on the graphic could be instead be written as ‘differences in’]

For example, my autism would look roughly like this:

But someone else’s autism might look like this:

Our autistic traits are different, and we would probably behave completely differently and have different needs, but neither of us is higher or lower functioning than the other, and neither of us is ‘more autistic’ or ‘less autistic’ than the other.

Similarly, ‘severe autism’ and ‘mild autism’ do not exist. No autistic person is more autistic or less autistic than another. Some autistic people might be better at masking their autism, so they might not fit society’s idea of what autism is like, but that doesn’t mean that they are less autistic.

In conclusion, autistic people should be the ones who decide what labels we use for ourselves, and neurotypical people shouldn’t speak over us on this topic.