Neurodiversity - the hidden value of diagnosis

Healthwatch Surrey wanted to understand what families perceive to be the benefits of a formal diagnosis of neurodiversity in the light of long waits for diagnosis and increased needs-based support for children and young people. They interviewed 15 parents and three children/young people, some waiting for diagnosis and some with a formal diagnosis.

Every journey to referral and diagnosis was unique: none could be described as easy but some had been less traumatic than others. Two variables impact the speed and quality of people’s journey to assessment and support, and ultimately to diagnosis: -

• Their school’s knowledge, experience and resources relating to neurodiversity.
• The parent’s existing knowledge and ability to identify the possibility of their child’s neurodiversity.

Ability to fund diagnosis privately obviously made a substantial difference. Almost all interviewees felt a formal diagnosis would make a significant difference to their child, or had found the diagnosis had been of great value.

Parents and young people spoke often and passionately about the benefits of diagnosis on their and their child’s mental health, peace of mind and family life. They also spoke of the value of a diagnosis when searching out non-statutory support and to help access the right statutory support, but few expected a diagnosis to automatically open doors to new levels of support.

The research found four key themes in the benefits of a diagnosis:

• knowing for sure what condition the child or young person has.
• Understanding and forgiveness
• Developing effective strategies to reduce difficulties and unlock the potential of the diagnosed person.
• Accessing support

The diagnosis is also a valuable signpost when searching for invaluable non-statutory (VCSF, informal) support groups, and a ‘ticket of entry’ to some of those groups.

The report contains five recommendations about information and support to families.