Autism terminology consultation and results

Last year, we received feedback from young people in Cumbria. They were uncomfortable with the inconsistent language used when speaking or writing about autism across services in the county. This included terms such as Autistic Spectrum Disorder (ASD) or Condition (AS), autism or autistic being used interchangeably.

Cumbria County Council (now Cumberland Council and Westmorland and Furness Council) and the NHS conducted a consultation.  This was to find out how Cumbrian residents would prefer services to speak about autism in the county.

The consultation was written in co-production with the:

National Autistic Society Young Ambassadors, Maya Stretton, Leah Benjafield and Pavan Bhamidipati.

Parent carers of autistic children and young people from SEND Alliance Cumbria (SENDAC) and SEND professionals employed by Cumbria County Council and the NHS. It was launched on 28 September 2022, and ran until 9 November 2022.  We received over 500 responses from individuals and families across the county.

A huge thank you to everyone who took the time to respond to the consultation.

Following the Consultation Report [PDF 214KB], the following proposals have been approved by the SEND Partnership Board for use throughout the County:

Westmorland and Furness Council and NHS services adopt identity first language

It is recommended services adopt identity first language as the preferred and consistent terminology used to describe autism in both verbal and written communications.

For example:

• I am autistic
• a child or young person is autistic
• an autistic person

More examples of identity first language can be found in the ‘How to talk and write about autism’ guide by the National Autistic Society.

The term ‘I am autistic’ is favoured by autistic respondents, with over 2/3 - 69% and similarly, by 66% of neurodivergent respondents.

Eradicate the use of the terms ASD and ASC unless speaking about an official diagnosis

Due to the negative impact the terms ASD and ASC have on autistic people, their friends and family.  It is recommended that all current documentation is updated to eradicate the terms ASD and ASC. In addition, the terms should no longer be used in verbal and written communications from Westmorland and Furness Council and NHS services or employees.

Autistic Spectrum Disorder (ASD) will remain as the medical diagnostic term.  Therefore ASD will still be used when discussing a diagnosis or within the formal diagnosis letter.

Identity must come first

Although there is a clear preference amongst respondents for identity first language to be used when speaking about autism, it is evident identity should be put first before any diagnosis, disorder or medical condition.

When speaking about autism, 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.  

These findings support the guidance and stance by organisations such as Autistica and the National Autistic Society. As such, the findings were presented to the SEND Improvement board and approved to be introduced county-wide, in key organisations including the:

• NHS
• the 2 new unitary councils for Cumbria (Cumberland Council and Westmorland and Furness Council)
• education settings
• third party organisations and contractors

We will be embedding these changes with colleagues across the county in:

• health and social care services
• education settings
• leisure and club settings
• with charities and commissioned services

We appreciate your patience and cooperation while we make these changes. We will keep families up to date on this page with work that has been done towards making this terminology the norm in Cumbria.