Summary of report content
This is a report on research undertaken by Asperger’s Children and Carers Together (ACCT) using a micro grant from Healthwatch Sheffield. The purpose is to hear from groups that are trusted partners in their communities to ensure that their voices are heard by decision makers.
ACCT deliver regular peer support discussion sessions for parent-carers of autistic children and young people in Sheffield. Between April and June 2021, they dedicated 7 of these sessions to exploring people’s experiences of health and social care services in Sheffield. 83 people took part in these sessions. The aim of the discussions was to understand the experience of parent carers.
Key findings included:
- Information about diagnosis and about relevant services and support is very important but not always easy to get
- Peer Support provides a vital route to accessing information and support, often filling gaps left by formal services
- Navigating the system and getting the right support can be very hard – often feeling like a battle
- School is a challenging environment for many children and young people, and support provided is often not appropriate for their needs
- Applying for an Education Health and Care Plan is difficult – external support (peer support, independent consultants) can make a real difference
- Long waiting lists (for diagnosis and support) are having a big impact on families
- Some Health and Care Professionals show good understanding of how to work with autistic children, but others do not appear to have the knowledge needed to do this well
- Support for parent-carers – there are many challenges involved in caring, and sometimes this isn’t recognised as a responsibility over and above their parenting role. Some parents report feeling judged and not listened to by professionals.
- At the end of our report we have also made several recommendations, which we hope will help commissioners and providers of local services to make change which will positively impact families of children with autism.
The report contains 6 recommendations about support, information, staff training, waiting times and involving parent carers.