What people with autism spectrum conditions think of services

The project was carried out in late 2020/early 2021 by Healthwatch Wiltshire, working in partnership with Wiltshire Service Users’ Network (WSUN).

We designed and ran two surveys, one for those with an autism spectrum condition and one for carers. The surveys ran for about 10 weeks. Due to Covid-19, we were not able to meet people face to face but we provided options for the survey to be completed online, over the phone or on paper.

What did we find out?

• We were told that an appointment with a doctor or nurse can cause considerable anxiety and stress for someone with an autism spectrum condition.
• Difficulties were reported in explaining things to health professionals and in understanding what they were told about their treatment and follow-up.
• Hospital environments were particularly difficult for those with an autism spectrum condition.
• Experience of phone call and video appointments were mixed and depended on the individual concerned. However, responses suggested that these had benefits for some people.
• Most of those with autism spectrum conditions and their carers did not feel that they got enough support related to their condition.
• We were told that most people were supported by unpaid carers. This included parents, partners, other family members and neighbours.
• Other support services were valued but we were told there was not enough information about them or their availability.
• There was mixed feedback about respondents’ experiences of diagnosis.

Recommendations

The report draws conclusions from the views and experiences that have been shared with us and makes recommendations based on these. The recommendations make suggestions that aim to improve people’s experiences of health and care services going forwards, based on what people have told us.