Autism terminology consultation and results

Last year, we received feedback from young people in Cumbria.  They were uncomfortable with the language used when speaking or writing about autism. This included terms such as:

  • autistic spectrum disorder (ASD)
  • autistic spectrum condition (AS)
  • autism or autistic being used interchangeably

Cumbria County Council and the NHS conducted a consultation.  This was to find out how Cumbrian residents would prefer services to speak about autism. The consultation was written in co-production with the National Autistic Society Young Ambassadors:

  • Maya Stretton
  • Leah Benjafield
  • Pavan Bhamidipati
  • parent carers of autistic children and young people from SEND Alliance Cumbria (SENDAC)
  • Special educational needs and disabilities (SEND) professionals employed by Cumbria County Council and the NHS.

The consultation launched on 28 September 2022 until 9 November 2022.  We received 500 responses from individuals and families across the county.

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

Following the consultation report [PDF 214KB], proposals have been approved by the SEND and Alternative Provision Partnership Board for use throughout the county.

Cumberland Council, the NHS and Cumberland Council commissioned providers adopt identify-first language

It is recommended services adopt identify first language to be 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 at: How to talk and write about autism.  A guide by the National Autistic Society.

The term ‘I am autistic’ is favoured by autistic respondents.

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

It is recommended that:

  • all documentation is updated to remove the terms ASD and ASC
  • the terms should no longer be used in verbal and written communications 

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

There is a clear preference for identify first language to be used. 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. The findings were presented to the SEND Improvement Board and approved to be introduced countywide in key organisations:

  • NHS
  • Cumberland Council
  • Westmorland and Furness Council
  • education settings
  • 3rd party organisations and contractors

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

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

We appreciate your patience and co-operation while we make these changes. We will keep families up to date making this terminology the norm in Cumbria.