Exploring the experiences of families with a child currently being assessed for Autism Spectrum Disorder Laura Jackson

Study Aims Explore thoughts and feeling toward diagnostic process Impact of process on child and parent well being What support is available for families

Results

Perception of Professionals Effected how parents viewed and experienced the diagnostic process Initial contact with professional at CDC

Perception of Diagnosis Majority of parents reported a negative experience Length of wait Detrimental effect on parent well being

Support During Process Seen unanimously as essential Parents description of support Lack of information from initial CDC Confidence in accessing future support Autism

Experience of Multi Agency Working Lack of communication between professionals Confusion about job roles and titles Need for lead professional / case worker / family support

Effect of Diagnosis Process Effect of overall experience is a cause for concern Mental health issues and family break ups Negative spiral of thought In relation to caregiver role Struggle to obtain diagnosis , out of 8 parents average wait; 14 months ;1 parent 24 months ‘push’ and ‘fight

Implications for Service Development Reflection on how to approach the potential diagnosis of ASD with parents Provision of step by step guide to process at initial CDC Provision of written info at initial CDC List of professionals and job roles Reduce Waiting List Social Story for children in preparation for CDAC clinic Review of existing information

….any questions? Thank you!! Thank you for taking part Thank you for listening ….any questions?