A digital patient journey is not a single system or platform. It is the sum of all the digital interactions that an individual and their family have with a service over time — from the first online search or referral request, through appointment booking, assessment, treatment planning, ongoing therapy, and long-term follow-up.

For autism services, the patient journey is typically long and complex. Families may wait months or years for an initial assessment. Once a diagnosis is made, they navigate a complex landscape of services, providers, and funding sources. They manage appointments across multiple disciplines, receive reports and recommendations from different clinicians, and try to coordinate care across home, school, and clinic.

A well-designed digital patient journey reduces the friction in this process — making it easier for families to access services, communicate with their care team, understand their child's progress, and navigate the system. It also supports clinical staff by reducing administrative burden, improving information flow, and enabling better coordination of care.

A poorly designed digital patient journey — or the absence of one — creates unnecessary barriers, increases the risk of information being lost or miscommunicated, and adds to the burden on families who are already managing significant challenges.

The digital patient journey begins before the family makes contact with the service. Families searching for autism services typically start online — searching for information about autism, looking for local services, and trying to understand what to do next. The service's digital presence at this stage — its website, its search visibility, and the quality of the information it provides — shapes the family's first impression and their decision about whether to make contact.

The referral process — the mechanism by which a family or a referring professional initiates contact with the service — should be as simple and accessible as possible. Digital referral forms that can be completed online, with clear guidance on what information is needed and what will happen next, reduce barriers to access and improve the quality of the information received.

Once a referral is received, the digital journey should include automated acknowledgement of receipt, clear communication about the expected waiting time and next steps, and a mechanism for families to update their contact details or provide additional information. For families who may be waiting months for an initial appointment, regular communication during the waiting period — even if it is only to confirm that the referral is still active — significantly reduces anxiety and improves the experience.

The assessment process is one of the most significant experiences in the autism journey for families. It is often long, involving multiple appointments with different clinicians, and the outcome — the diagnostic report — is a document that will shape the child's access to services and support for years to come.

Digital tools can support the assessment process in several ways. Pre-assessment questionnaires and information-gathering tools — completed by parents and, where appropriate, by the individual themselves — can be administered digitally before the first appointment, reducing the time spent on information gathering during the assessment and improving the quality of the information available to clinicians.

Assessment documentation — the clinical notes, standardised assessment scores, and diagnostic formulation — should be captured in a structured clinical information system that allows the information to be shared across the clinical team, retrieved easily for future appointments, and used to generate the diagnostic report.

The diagnostic report itself — the document that communicates the outcome of the assessment to the family and to other professionals — should be produced in a format that is accessible and understandable to families, not just to clinicians. Digital delivery of the report, with the option to discuss it in a follow-up appointment, is preferable to postal delivery of a document that families may struggle to interpret without support.

Once a treatment plan is in place, the digital patient journey shifts to supporting ongoing care. This includes appointment management — booking, reminders, and rescheduling — communication between families and the clinical team, access to information about the treatment plan and progress, and coordination across different services and providers.

A family portal — a secure, accessible digital interface through which families can manage their appointments, communicate with their care team, access reports and documentation, and track their child's progress — is a valuable component of the digital patient journey for autism services. It reduces the administrative burden on families, improves communication, and gives families a sense of agency and involvement in their child's care.

The family portal should be designed with the communication and accessibility needs of autistic individuals and their families in mind. This includes clear, plain language; visual supports where appropriate; and accessibility features for individuals with different sensory, motor, or cognitive profiles.

Outcome measurement — the systematic collection of data on the progress of individuals receiving treatment — should be integrated into the digital patient journey. This means using validated outcome measures that are appropriate for the individual's age and profile, collecting data at regular intervals, and making the data available to both clinicians and families in a format that is meaningful and actionable.

Several overarching principles should guide the design of a digital patient journey for autism services.

**Accessibility first.** The digital patient journey must be accessible to autistic individuals and their families, including those with different communication, sensory, and cognitive profiles. This means designing for accessibility from the outset — not retrofitting accessibility features after the system has been built.

**Plain language.** All communications and documentation in the digital patient journey should be written in plain, clear language that is understandable to families without clinical training. Medical jargon and complex sentence structures should be avoided.

**Privacy and security.** Health data relating to autistic individuals — particularly children — is sensitive and must be handled with appropriate privacy and security protections. The digital patient journey should be designed to meet applicable data protection regulations and to give families clear information about how their data is used and protected.

**Integration, not fragmentation.** The digital patient journey should be designed as a coherent whole, not as a collection of disconnected systems. Where multiple systems are used — for example, a clinical information system, a family portal, and an appointment management system — they should be integrated so that information flows between them without requiring manual re-entry.

**Human oversight.** Digital tools support the patient journey; they do not replace the human relationships that are at the heart of effective autism services. The design of the digital patient journey should ensure that digital interactions complement, rather than substitute for, direct contact between families and clinical staff.