Co-producing an intervention to improve care for children with Autism Spectrum Disorders: A cross-disciplinary mixed-methods study

End of project summary

Key messages: 

• Care pathways outlined within the literature and government policies are experienced differently by parents. Gaps remain within the system, despite improvements suggested and implemented by the all-Wales autism service surrounding multi-disciplinary support, holistic care, co-productive practices and similar principles of good care. 
• Some of these gaps include: waiting times and delays to accessing diagnosis, professionals and educational support, a lack of effective communication between parents and professionals, and little to no post-diagnostic support. 

Implications of Research

For policy makers: 

• The establishment of a more detailed post-diagnostic system, inclusive of person-centered social and emotional support for each individual within the family unit. This system could include regular ‘check-in’ points or establish a request for help system to enable families to easily ‘re-enter’ the system as and when needed. 
• Smoother transitions between sub-systems, possibly aided by a keyworker or professional or providing parents with the adequate training to fulfil some of this role. 
• There needs to be flexibility within the pathway to allow individuals to access the appropriate support. 
• Systems of care should involve co-productive practices at multiple stages of its development, implementation and evaluation. 

For practitioners: 

• There is a need for systematic changes, both environmental and procedural, which would allow practitioners to further support autistic individuals and their families. Healthcare providers need skills training and access to resources so they can help patients navigate the care pathway. 
• Establish trust-worthy practice through open communication between key stakeholders, inclusive of parents, so that families are willing to, and equipped to, engage with professionals. 
• A move towards strengthening cross-disciplinary work, such as by increasing communication between healthcare and education is required. 
• Increasing communication and information sharing between stakeholder groups, such as professionals and parents, is also needed in order to ease transition and manage expectations. 

For parents: 

• Continued training for parents, and professionals from multiple disciplines is required to aid better co-productive practices, increased communication and understanding of autism. 
• There is a need to empower parents and family members through family- centred mechanisms the opportunity and flexibility to re-access professionals and resources as and when the family believe support is needed. However, parents should not need to fulfil the role of keyworker in order for the care system to function.