Changes to language used around autism are being made across services in Cumbria.
The changes are being made after parents, carers and individuals highlighted that language surrounding autism in organisations across the county was inconsistent.
In response to the feedback, the former Cumbria County Council launched a terminology consultation in 2022.
It was found that the terms including ‘Autistic Spectrum Condition (ASC)’ and ‘Autism Spectrum Disorder (ASD)’ were being used in casual and informal settings.
This caused upset for some people and families, and one person said: “It makes me feel like being autistic is a problem or something to be ashamed of or something wrong, when it isn’t.”
The consultation received over 500 responses, with a quarter of respondents stating they identify as autistic, which is 141 out of 500 responses.
Following a report of the responses, three key outcomes were proposed to the Cumbria Special Educational Needs and Disabilities Partnership Board in 2023 and approved for implementation throughout the county.
The key changes are as follows:
- Organisations and services in Cumbria are to adopt identity-first language to describe autism in both written and spoken communication. Examples of identity-first language include ‘I am autistic,’ ‘they are autistic,’ ‘he/she is autistic,’ ‘an autistic person,’ etc. This is instead of person-first language, in which the person would be described as ‘having autism’, ‘they have autism’, ‘a person with autism’, etc.
- Eradicate the use of ‘Autistic Spectrum Condition (ASC)’ and ‘Autistic Spectrum Disorder (ASD)’ unless for medical diagnostic purposes. Many respondents stated that the terms ‘condition’ and ‘disorder’ imply there is something wrong with them and can have negative connotations. The terms should no longer be used in verbal or written communications, unless relating specifically to the individual’s diagnosis in a clinical setting.
- While there is a clear preference for identity-first language to be used, if an individual declares identity first terms are not their preference, they should be asked how they would like to be identified. Their choice should be supported, respected, and used whilst communicating with them.
Organisations including both Cumberland and Westmorland and Furness Councils, the county’s health and NHS services and education and wider organisations are being asked to make the changes.
Colleagues from both councils are now working to ensure the outcomes are being implemented throughout organisations in the county. Both council’s have said the public’s patience is appreciated while the work continues.
It is hoped that by making language and terminology around autism standardised, that organisations can work together to make people feel more comfortable, reduce confusion, and ensure that everyone understands and uses the preferred terminology where possible.
Emma Hamer, assistant director for education, SEND and inclusion for Cumberland Council, said: “Language plays a key role in our understanding of how others recognise themselves.
“This work is an excellent step forward in ensuring that autistic people feel included, and I would like to take this opportunity to strongly encourage all organisations in Cumbria to review their use of language, and employ the terminology detailed in the outcomes of this consultation.
“We are continuing to implement these outcomes with colleagues, in the hope that this consistent language and terminology will promote and advocate inclusion and acceptance in the Cumberland area and wider county.”
Milorad Vasic, Director of Childrens’ Services for Westmorland and Furness Council, added that the consultation has been an important process.
She said: “It has been vitally important that we listened to what people had to say, and now, importantly we are committing to doing what they ask so that everyone will recognise themselves in the way we address them.
“I now hope that organisations across Cumbria will get on board with this review as soon as they can to help ensure inclusion for all.”
