Judith Gould and Lorna Wing offer some points to be considered when setting up an adult diagnostic service.
Points to be considered
1. Referral route and process
- Who can refer?
- Are self-referrals accepted?
- Are screening materials used prior to the diagnosis and are these self-reports?
- If yes, to above, what screening materials are used?
- Do the outcomes of any screening material impact on type or level of diagnostic assessments carried out?
- What other sources of information are sought?
- Is a pre-visit/assessment contact made to explain the diagnostic process with the client and/or informants?
- Is there a user-friendly leaflet to describe the service?
2. Diagnosis and assessment process
Where
- What type of setting is used?
- Is the environment ASD-friendly?
What
- What assessments are used to carry out the diagnostic process? Are 'recognised' diagnostic tools used eg DISCO, 3di, ADI-R and/or own team's proforma for taking a developmental history?
- What assessments are used to assess the individuals themselves? Do the assessments cover the following key areas:
- social interaction and social understanding
- communicative ability (including social use of language)
- social imagination and flexibility of thought
- cognitive profiling
- adaptive skills
- sensory issues
- educational history
- vocational and employment history.
- Which tools are used to assess the above?
How
- How many sessions are allocated in order to carry out the diagnosis and assessment of needs?
- How soon after the diagnosis is this shared with the client and/or informants?
- Is there sufficient time for clients to outline their own views?
- Are there different types of assessments to reflect the complexity of cases or is there a standard package?
Who
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Team
- Is there a team representing a range of disciplines eg psychiatrist, psychologist, speech and language therapist, mental health workers, etc?
- Have the team members undertaken appropriate training in the diagnosis and assessment of ASD?
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Informants
- Is there an attempt to gather information from various sources, with the agreement of the client eg spouse, partner, parents, carers, siblings, befrienders, advocate, support workers, etc?
- Are other secondary sources explored eg previous reports, employment records, school reports/history, etc?
Feedback
- At what stages during the diagnostic process is verbal feedback given to the client and informants and how is this structured?
- Is the verbal feedback given by the lead professional or the multi-agency team?
- Is sufficient time given for questions either at feedback or later? If later, is a contact person or a protocol for contact agreed?
Reports
- Are the reports sent out in draft format to the client and informants before wider distribution?
3. Post-diagnostic services
- Once the diagnosis has been given, are there additional follow-up sessions to discuss the implications of the diagnosis?
- Are there links with relevant services, support networks and pathways to move a client on post diagnosis?
- If a diagnosis of ASD is not made, are there systems in place to refer the client to alternative services?
4. Evaluation of the service
- Are there formal and informal systems for reviewing the models used by the diagnostic team?
- Are there opportunities for the client and other users to be involved in the evaluation of the service?
- Does the service link up with other specialist diagnostic teams or ASD services to enhance links and networking?