Supporting children and families where ASD and ADHD is suspected

Healthwatch Northamptonshire undertook research on support for children and families where autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD) was suspected. They spoke to 12 families and four professionals, carrying out 16 interviews in total to understand experiences of the assessment and diagnostic pathway over the previous 12 months. 

The report found that the diagnostic process was often lengthy, fragmented and difficult for families to navigate. Parents frequently felt their concerns were not taken seriously, reported poor communication between services and described a lack of clear information about referrals, assessments and waiting times. Delays of more than two years were common, with shortages of educational psychologists and inconsistent referral processes contributing to long waits. Families also reported that delays negatively affected children's wellbeing, behaviour and educational progress.

Many families felt there was insufficient support available while waiting for assessment or after receiving a diagnosis. Parents described limited practical help, difficulties accessing support without a formal diagnosis, and particular challenges during the transition from primary to secondary school. Concerns were also raised about inconsistency in assessment processes, differences between services and poor coordination between health and education professionals. However, some services, including Portage, Sleep Solutions and individual education professionals, were praised for providing valuable support. 

Healthwatch Northamptonshire recommended improving professional training and awareness of ASD and ADHD, strengthening communication and coordination between services, providing clearer information about the diagnostic pathway, reducing delays in assessment, offering support based on need rather than diagnosis alone, and improving support during key transition periods. The report concluded that many families were struggling to obtain timely assessment and support and that significant improvements were needed to create a more coordinated and responsive system.