Changes to language around autism are being introduced throughout services in both Cumberland and Westmorland and Furness Councils, health and NHS services, as well as in education settings and wider organisations. This is following a terminology consultation held by Cumbria County Council in 2022.
The consultation took place following feedback from parents, carers, and individuals that the language surrounding autism in organisations throughout the county was inconsistent. It was found that the terms ‘Autistic Spectrum Condition (ASC)’ and ‘Autism Spectrum Disorder (ASD)' were being used in casual and informal settings. This caused upset of some individuals and families, with one individual commenting:
“It makes me feel like being autistic is a problem/something to be ashamed of/something wrong when it isn’t.”
The consultation received over 500 responses, with a quarter of respondents stating they identify as autistic (141 responses). Following a report of the responses, three key outcomes were proposed to the Cumbria SEND (Special Educational Needs and Disabilities) Partnership Board in 2023 and approved for implementation throughout the county. They 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.
Colleagues from both Cumberland and Westmorland and Furness Councils are now working to ensure the outcomes are being implemented throughout organisations in the county, and the public’s patience is appreciated while the work continues. It is hoped that by ensuring language and terminology is standardised, 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 r 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.”
The full consultation report is available to read on both Cumberland Council’s Local Offer website.