Cumbria County Council and NHS seek views on autism language

Posted: 04/10/22

Cumbria County Council and the NHS have launched a consultation to find out how people would prefer to speak about autism.

The consultation, which will close on Wednesday 9 November and only takes 2 minutes to complete, is aimed at autistic adults, young people and children, parent carers and professionals that support autistic people.

The views shared through the consultation will support Cumbria County Council and the NHS to determine consistent terminology that will be used when speaking about autism across services.

The language used when speaking about autism is often inconsistent, with terms such as Autistic Spectrum Disorder (ASD) or Condition (ASC), autism or autistic being used interchangeably. National guidance, Cumbrian young people, and their families have reported being uncomfortable with the inconsistencies and this consultation is designed to explore ways to change this.

Alex Nancolis, NHS SEND Designated Clinical Officer, said: “Although the vast national research out there suggests that, as a county, we need to change the way we speak about Autism in Cumbria, launching this consultation to find out the views of autistic adults, young people, parents and carers is extremely important.

“We want to make sure the way we speak about Autism is consistent across services and that you a part of the decision.”

Hayley, a Cumbrian parent carer to an autistic daughter is passionate about the change in terminology. She said: ‘‘There is much work left to do to improve the services offered to autistic young people and adults in Cumbria.

“The terminology used by professionals sets the tone of conversations so I would like to encourage all parents, carers and young people to get involved and have your say – let’s help to steer this positive change!”

Sally Senejko, SEND and Inclusion Senior Manager said: The feedback we’ve received has highlighted the way we speak about autism is an important matter to autistic people and their families.

“By listening to their views in this consultation, we will be able to make positive changes that will make a difference to their experience when accessing county council services for children and adults.”

You can take part in the autism language consultation online today.

The survey can be completed online by visiting