Delivery of autism services in Wales - consultation response

In 2019 we responded to the Welsh Government's consultation on its draft code of practice on the delivery of autism services. We welcome the Welsh Government's attempts to improve services for children with Autism Spectrum Disorder (ASD) but are concerned about separating ASD out of the Neurodevelopmental Disorders (ND) pathway.

The Welsh Government's original consultation documentation on its code of practice on the delivery of autism services is available online. It outlines plans for how local authorities and health boards will help people with autism through: assessment and diagnosis, getting care and support, raising awareness and training, planning and checking services.

The consultation covered both children and adult services, but our response focused on issues affecting children, young people, their families and paediatricians.

Our response

  • We are pleased that the Code recognises progress that has been made through the Together 4 Children and Young People (T4CYP) programme. However, we are concerned about separating children with ASD from others accessing services through the Neurodevelopmental Disorders (ND) pathway.
  • We are concerned that the Code does not address the question of capacity as a starting point and places no duties on Health Boards to deliver a fully staffed community paediatric workforce, risking a significant barrier to delivery.
  • We are concerned that the Code is potentially discriminatory and is not child-centred. Children presenting with a range of issues or symptoms that may be similar to or overlap with ASD, but where ASD is not an appropriate diagnosis, may be excluded from a pathway to receiving the appropriate care and resources.
  • We are concerned that the Code could lead to pressure services to 'filter out' and prioritise ASD from the ND pathway, risking creating an 'unmet middle' of children with ADHD, sensory processing disorders, Learning Disability and those who have experienced chronic trauma. 

Our recommendations

  • Plan the child health workforce. This was the key recommendation in our 2018 winter workforce briefing and is the key factor in improving outcomes for children with ASD or ND and their families.
  • Ensure that the Code meets the needs of all vulnerable and disadvantaged children that require the services of community paediatricians as part of the assessment and diagnosis through the neurodevelopmental pathway, in line with the acknowledged improvements made through T4CYP.
  • Ensure that policy makers have direct engagement with clinicians through holding workshops in North and South Wales specifically for paediatricians, psychiatrists, OTs, Speech and Language Therapists and others involved in the multidisciplinary teams providing diagnoses and services to children with ASD and ND. This would enable policy makers to better understand the challenges faced by clinicians and the real world implications of any proposed changes. We would be glad to help facilitate this and would be confident of support from colleagues at other relevant Colleges.

We respond to a wide range of consultations to ensure that the College's position, and ultimately children's health, is represented. Members can get involved in current consultations by contacting the Health Policy team: health.policy@rcpch.ac.uk