Between June 2020 and March 2022 the national autism team has undertaken considerable stakeholder engagement with people with lived experience, 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, and to establish how to improve access to and the quality of service provision.
Taking all the information together, we identified five distinct stages to the autism diagnostic pathway, 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 possible autism, autistic people and their families should be provided with support once needs have been identified. 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, problems and needs and the background to these, and reaching a diagnostic conclusion. It can be beneficial for families to be involved in the assessment, 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
People seen at an autism diagnostic service can benefit from support after the assessment has ended. Some autistic people may prefer group-based approaches, whereas others may prefer individual sessions. Post-assessment support can include psychoeducation, about topics such as what is autism. In addition, this can be individually tailored, and support the person to build on strengths and develop strategies for managing problems and needs.
We continue to work with partners to improve access to and the quality of the diagnostic process for children, young people and adults.