Listening to Neurodivergent Families in York

This is a report by Healthwatch York. The project looks at family experiences of neurodivergent children.

Key findings:

• Parent blame is still prevalent in services, and also experienced from friends, family and wider society, as understanding of ND is still limited. 
• Experiences are worsened by poor admin and communication.
• Services still work in silos, with families forced to play a key co-ordinating role.
• Capacity in services is limited; many are looking for reasons to say ‘no’ to providing help.
• Schools support varies considerably, and school behaviour codes can feel punitive to ND children and young people. 
• There is significant overlap between children who are ND and who are gender questioning. Services are not geared up to appropriately support these children and may even ask them to hide part of their identity so they can access support for the other element.

There are recommendations in this report:

• Research into ND friendly school behaviour charters.
• Better administration and communication.
• Training to improve understanding and awareness of ND, PDA, trauma, EBSA, and signs of autistic burnout.
• Improvements to the pathway for ND children who are gender questioning.
• A clear sleep support pathway for York.
• Better support for families, including connections to peer support at the earliest stage

The ICB has responded to the report.