Getting an autism diagnosis for a child can be difficult. The process usually begins with a family GP, but a child then needs to be seen by specialised professionals. They may then be assessed by more than one professional and for more than one condition.
What is the project about?
The NHS England Long Term Plan (2019) made services for autistic people a priority. The Long Term Plan aims for more families to get the right help, more quickly. To do this, waiting times need to be shorter so children will get the right support when they really need it. This project aims to guide the people who plan services for children to make the process easier and quicker for families.
The full project title is A Realist Evaluation of Autism ServiCe Delivery (RE-ASCeD): Which diagnostic pathways work best, for whom, when, and at what cost?
Visit the project website.
What are researchers doing?
Researchers have begun by establishing how processes currently work on a national level by understanding how long the diagnosis process takes and how many children are seen by diagnosticians. Early findings from a survey of current practice in 132 teams nationally suggest that the number of children referred for diagnostic assessment has doubled in the last 5 years, yet in most teams, there has been no additional funding over the same time period.
They will also look for evidence within the UK and abroad for practices that make the diagnosis process more efficient.
The researchers will then take a more focused look at processes that are working well by talking to clinical staff, managers, referrers, parents and young people. To better understand the current process, they will also work with about 200 - 300 families to review the steps that children went through on their diagnosis journey.
Finally, they will bring together all of these findings, sharing them with autism experts and patient groups. Collectively, they will create guidelines for best practice to be shared with clinical teams, service managers, commissioners, parents’ groups, and NHS England.
How will the project help?
By bringing together lived experience and models of best practice, the project aims to provide models for timely and cost-effective routes to diagnosis that can be adapted for practice within the UK.
By developing an evidence base, it aims to create an argument for change to services that will bring on board clinicians, service managers and commissioners.
It is hoped that the project will inform updates of the existing NICE guidelines for Autism diagnosis, and could also contribute to international guidelines for diagnostic practice.
How are Autistica supporting the project?
We will be facilitating involvement on the project, alongside other community organisations. We will be supporting community members to engage with the project, sharing their experiences and skills through surveys, interviews and focus groups. We will be supporting them to shape the direction of the project at every stage. We will also work with the research team to support their dissemination plan to ensure that the guidelines created reach the professionals and policymakers who can create real impact.