How to talk about autism

Words are powerful. They can make a huge difference to many things, and especially to people. Some positive words at the right time can be life changing for someone, while a single negative comment can set someone back enormously.

If you are new to a subject, such as autism, getting the language right can feel like a minefield. You may well be aware that there are right and wrong ways to say things and preferred phrases and words to use, but you are not sure what these are. You are a caring and thoughtful person, so you certainly do not want to say the wrong thing or cause upset or offence.

This resource is designed to help you negotiate the language of autism. There are two key principles to keep in mind. Firstly, all autistic people are different and while there are certain terms that generally preferred and others which are best avoided, every autistic person will have their own preferences in terms of language. Secondly, talk to autistic people and ask them what they prefer. If you are open and honest in asking, most autistic people will welcome your thoughtfulness and appreciate you putting their preferences first.

We need to understand autism

Autism is a spectrum condition. This means that it takes a wide variety of forms in different people and has widely different impacts on their lives. On top of this, every autistic person is also a unique human being in the same way that we all are, so they have their own distinctive blend of strengths and weaknesses, likes and dislikes and so on. There is no single factor which is characteristic to autism, two autistic people may be hugely different from one another and have nothing in common other than being people and being autistic.

Autism means that the brain and neurological system work differently. Effectively, autistic people are wired another way! It is not a disease or a disability, though living in a world that is not designed for how your brain works can feel like a disability and require adjustments accordingly. For example, many autistic people are hypersensitive to certain sounds, bright lights or strong smells, so having to work in a bright and noisy environment next to a smelly kitchen may well cause problems for some.

There are also many false myths about autism. For example, not all autistic people are good at maths and technology. While many autistic people do have highly analytical brains and perform brilliantly in jobs in the IT sector, many others have totally different strengths and abilities. Keep an open mind when getting to know an autistic person just as you would when you meet anyone else for the first time – it is not helpful to say something along the lines of “I have another autistic friend, but you are nothing like them!”

The difference between ‘person-first’ and ‘identity-first’

One point of language which is hugely important to autistic people is the difference between person-first and identity-first language.

Person-first language is where the person is described before the condition, such as a boy with a disability or a girl with a visual impairment. Identity-first language describes a condition first, such as a disabled boy or a blind girl.

This distinction is important because the use of one or the other can give a major impression of how you view the person described whether you mean it or not. It is also respectful and proper to address and describe someone as they prefer, just as we do with titles such as him, her or they. We all have the right to determine how we are described and referred to, and we should all respect the preferences of others.

Why we need to use the right terminology

While person first language is preferred for many conditions, a lot of autistic people do not see autism as a condition at all but as an integral part of who they are. If they were not autistic, they would be a different person – it is not seen as an add-on such as having a disease. Indeed, one of the most offensive things that you can say to many autistic people is to suggest that they can or should be cured. Autistic people are different rather than better or worse than others – to talk about curing them implies that there is something wrong with being how they are.

It can be more helpful, therefore, to think of autism in a similar way to a characteristic like being tall. You would not suggest that someone be cured of their tallness, and you would describe them as a tall person, not a person with tallness, as their height is an integral part of who they are.

But as always, the preference of the person concerned is the most important factor of all. If they want to be described as a person with autism, that is how you should refer to them.

Terminology to use

A good principle to follow when choosing language to use about autism is to refer to it in a positive way. Many autistic people have had multiple experiences of being excluded or worse as a result of being autistic and will greatly appreciate being seen and described by their many positive attributes.

For example, one positive way to describe an autistic person is to say that they are gifted with autism. This immediately turns thinking and the emphasis to the many positives that autism brings.

Many autistic people do see autism as a gift and while it can cause problems as a result of the world being set up for a different way of thinking, they would not choose to be any other way. It is also generally fine to talk about someone being on the autism spectrum, which recognises the great diversity that exists within the autistic community.

When talking about issues that autistic people face, it is normally fine to talk about challenges and adjustments needed for the person. After all, many people face challenges and need adjustments for a wide range of things, from needing subdued lighting to avoid migraines to sitting away from a draft to avoid back pain.

Terminology to avoid

Just as it is best to be positive when talking about autism, it is also best to avoid negative language.

For example, phrases like “suffers from autism” should generally be avoided, as many autistic people do not feel that they suffer as a result of being autistic at all – any challenges they face are as a result of the world not being designed for them. Autism Spectrum Disorder (ASD) is also good to avoid – many autistic people do not believe that a fundamental part of who they are is a disorder at all. Similarly, do not describe someone as having autism unless they have expressly asked you to do so. Most autistic people do not view themselves as having a disease or disability, which the phrase implies.

It is also good to try and avoid labels for “types” of autism, such as high-functioning and low-functioning, or severe and mild. Autism is not like a burn to the skin which can have different degrees of severity – it impacts every autistic person differently and terms such as this judge autistic people against non-autistic standards. The fact that an autistic person may not speak much, for example, either through choice or because they cannot do so, does not make them any less valuable as a person.

Try also to avoid talking about autism as a mental illness. It is a neurological difference, while the term illness implies that there is something wrong that could and should be cured. Many autistic people do also have mental health challenges, but those are often as a result of living as an autistic person in a neurotypical world rather than as a direct consequence of being autistic.

 

The words we choose to use can give a window to our thinking, and if we are careless with our words, we can show disrespect and cause hurt and offence. It is not true to say that they are “only words” when used to describe how we view someone.

Awareness of the importance of words more generally is growing, as is the importance of asking people how they would like to be described and respecting that, even if we may not always understand it ourselves.

Most autistic people would like their autism to be viewed as a positive and integral part of themselves, not as a hindrance or disease. But most of all they would like to be asked about the language they prefer, and to be listened to and respected when they give their preferences.

Download the PDF resource