Local Support for Young People with a Neurodiversity Diagnosis

Getting a neurodiversity diagnosis– which can include conditions such as Autism Spectrum Disorders (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) – for your child can leave families with lots of questions, including what they should do next.

Families that use the community paediatric services across Bedfordshire and Luton provided feedback via focus groups, parent panels, and family and friends surveys, and they indicated that there was a need for more information, resources and support following a diagnosis.

During 2021, work was undertaken across Bedfordshire and Luton Children’s Services on a project to create a ‘Neurodiversity Diagnosis Support Pack’. The support pack aims to be a one-stop shop for parents and carers to access information and support following a neurodiversity diagnosis. The pack includes a variety of information including videos, infographics and animations. It can also be translated into a variety of languages, audio options or Easy Read at the click of a button.

The project was co-produced by parents/carers and young people, and the project group included Bedfordshire and Luton Community Paediatrics Services, Child and Adolescent Mental Health Services (CAMHS), our three local authorities, Parent Carer Forums and Autism Bedfordshire.

From the initial discussions, feedback revealed that language commonly used during the diagnosis process – such as “disorder”/“lack of”/“problems” – is seen as negative, which was having an impact on the young people and their families. The project team took this on board and ensured that the support pack identified and promoted the positives of neurodiversity.

This resulted in the inclusion of a dedicated section sharing lived experiences from local young people, inspirational role models, and a series of interviews with young people, parents and clinicians sharing the positives of neurodiversity for them.

Following the support pack being distributed, one of our local schools said:

“This is fantastic. Thank you very much, this is very important to see the positive approach and detailed information. I have shared with parents and staff, and have had many great responses from parents, as well as staff, who have children with a neurodiversity diagnosis. So please pass our thanks on.”