Parent and carer experiences of Autism Spectrum Disorder Services
Download (PDF 450.82 KB)Summary of report content
In 2017 Healthwatch Wakefield decided to investigate service provision and the experiences of assessment and treatment for Autistic Spectrum Disorder (ASD) in response to concerns raised by various sources, including parents. There were specific concerns that an increased investment in ASD services and assessment had resulted in minimal impact on waiting times. From May - July 2017, Healthwatch Wakefield engaged with parents and carers of children with Autism Spectrum Disorders (ASD) through voluntary and community sector groups which included the Beat Autism group, the Fusion Youth Club and Kidz Aware.
The numbers of parents and carers interviewed were relatively small, with a total of nine interviewees. The data collected was qualitative in nature and the data was analysed and sorted into key themes which are detailed in the main body of the report. All feedback was from White British parents and carers.
Overall, there was a feeling of lack of resource for the service which was displayed by the long waiting times for assessment, lack of support for parents and carers prior to and following diagnosis and access to specialist staff and the therapy support following a diagnosis. In addition to an increase in the support services available for parents and carers and their children there was also felt to be a need for training for staff working in autism services, both directly and indirectly, to be better able to manage interactions with patients, parents and carers and specifically around empathy and compassion being displayed by staff at all levels.
The case studies show that the transition period between children's and adult services can be a particularly challenging time for parents and carers to navigate, and that communication between services and their service users/ carers is a key issue for improvement. Parent and carer suggestions for improvements are contained within the case studies and Healthwatch Enfield express their hope that these suggestions will feed in to a broader review of ASD services.