Neurodiversity – the hidden value of diagnosis

In the light of long waits for diagnosis and increased needs-based support for children and young people, we set out to explore what families perceive to be the benefits of a formal diagnosis.

Our report reflects the experiences shared with us by 15 parents and 3 children and young people who are waiting for or who have received a formal diagnosis of Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), or other conditions relating to neurodiversity.

We recommend all organisations consider our findings and share reflections with partner services as well as Healthwatch Surrey.

We encourage all services to

• Continue to listen to families waiting for referrals or diagnosis; work with them to develop support that meets their wider needs
• Use our insight to reflect on the support being offered – are there any additional benefits of diagnosis that could be delivered pre-diagnosis?
• Continue to work with schools at an individual level – even in our small sample schools seemed to vary in their resourcing and approach
• Empower grassroots and community groups – recognise their value to families, and ensure they have the information and support they need to thrive
• Ensure those willing and able to fund private diagnosis have the information they need to ensure their diagnoses are valid across all statutory services (we did not hear any direct experiences of diagnoses being rejected, but most parents had heard of ADHD diagnoses that had not reached the required standards).