Findings about the autism diagnostic pathway based on stakeholder feedback and research evidence
Between June 2020 and March 2022 the national autism team undertook considerable stakeholder engagement with autistic people and their families and carers, clinicians, researchers and representatives from charities and third sector organisations. The focus of this work has been to better understand gaps in the autism diagnostic pathway for children, young people and adults. In order to identify service improvements aimed at increasing access to and improving the quality of service provision.
Considering our findings, we identified five distinct stages to the autism diagnostic pathway, as described below:
Stage 1: Identification and referral
People can be referred for an autism diagnostic assessment at any age.
The referral process should be transparent and easy to access. Improving awareness about autism across the NHS, and in social care and education will increase referral rates.
Stage 2: Screening and triage
Screening and triage are ways of gathering information about the presenting problems and needs a person is experiencing at the time of referral, and the appropriateness of an autism diagnostic assessment.
Sharing up to date information between health and social care services and education is one way of improving the quality of the screening process. It means autism diagnostic services can make clinical decisions based on a person’s current problems and needs.
Stage 3: Pre-assessment support
Pre-assessment support involves providing input before the diagnostic assessment has taken place or a diagnostic conclusion has been reached. People referred with suspected autism and their families should be provided with support based on needs that have been identified before the full assessment has taken place. This can include signposting to other services, having an allocated worker at the autism diagnostic service to give updates about waiting times, or providing psychoeducation or other interventions for the person, their family, or both.
Stage 4: Diagnostic assessment
The diagnostic assessment focuses on finding out more about a person’s strengths, preferences and needs including, gathering background information, in order to reach a diagnostic conclusion. It can be beneficial for families to be involved in the assessment process, with the person’s consent. The assessment process can be flexible and individually tailored. Autism diagnostic services should ensure that the person and their family are offered opportunities to talk about the assessment outcomes and what this means for them.
Stage 5: Post-assessment support
Following the diagnostic outcome people should be offered support to help them manage and understand their diagnosis. Those who are not diagnosed with autism may still benefit from advice and signposting.
Those diagnosed as autistic should be given options to support individual preferences. These may include group-based approaches or individual sessions. Post-assessment support can include psychoeducation about autism and should build on strengths, developing strategies to managing individual needs.
We continue to work with partners to improve access to and the quality of the diagnostic process for children, young people and adults.