My voice counts: the views of young people with autism about their experiences of health and care services

Healthwatch Derbyshire undertook research to understand what young people with autism say about their experiences with health and care services.  They built links with a local school and heard from 15 young people with autism.

Key findings

The main thing that the young people shared with us was that they did not feel listened to by health professionals, this included GPs. However, mostly they said this about getting help from mental health services, like Children and Adolescent Mental Health Services (CAMHS) 

They felt that services did not know enough about young people with autism and their needs. This makes services difficult to access and can lead to inequalities 

When given the option of what service to share their views about, most people mentioned CAMHS. All who shared feedback said it was not a good experience. They talked about not being listened to, long waits, and not being helped because they had autism.

The young people had many positive experiences to share about their dental care. There were good practice examples given of dentists playing music, having a comfortable seat and clearly explaining what they were going to do before they did it. Most reported positive experiences at opticians.

There is a need to improve communication with young people with autism, as they want to be involved in their health care. Young people want to be listened to. Many felt they do not get the help they need with their mental health.

Young people are concerned about waiting for help and treatment. They want and need to be kept updated about what is happening. They feel that waiting times are too long 

There should be greater awareness of the needs of young people with autism and the adjustments that can be put in place to improve their experience. This will enable young people with autism to have control and responsibility for their long-term health and well-being.