In setting up a local diagnostic pathway, you should begin by looking at the National Institute for Health and Clinical Excellence (NICE) guideline, entitled Autism: recognition, referral, diagnosis and management of adults on the autism spectrum, which sets out clear expectations on how local services should be configured.
The guideline, published in 2012, is clear that there should be multi-agency autism teams in every area and that a partnership board or local planning groups should oversee the work of the team.
It is considered best practice, and should be read by health and social care commissioners across the UK.
What does the adult autism NICE guideline call for?
The guideline is a comprehensive document that covers every aspect of care for people with autism across the spectrum.
Key recommendations include:
- specialist autism teams should be established in every area and equipped with the knowledge to offer diagnosis, training and support
- local multi-agency groups should be set up, with representation from a range of service areas, to take the lead on changing services locally
- improved support for adults with autism who are experiencing mental health problems
- adults with autism, and where applicable their families and carers, should be more involved in the development of their own support plans
- supported employment should be made available for those having trouble keeping down a full-time job.
NICE has also ruled out the use of many of the controversial interventions such as anticonvulsants and chelation to 'treat' the core symptoms of autism.
NICE guidelines are expected to be followed by professionals and the NHS in particular, unless there is good reason why they have not been followed.
Video: Click here to watch Prof. Simon-Baron Cohen, Professor of Developmental Psychopathology at Cambridge University, talk about the NICE guideline and autism research
Considerations for setting up a diagnostic pathway
Some points to be considered when setting up an adult diagnostic service from Judith Gould and Lorna Wing.
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
- What type of setting is used?
- Is the environment ASD-friendly?
- 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 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?
- 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?
- 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?
- 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?
- 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?
Examples of diagnostic pathways
- The Liverpool Asperger Team
- Bristol Autism Spectrum Service
These two examples of diagnostic pathways offer differing approaches but both offer the potential for developing diagnostic services and are possible frameworks for developing these types of pathways in other areas.
Information sharing, strong leadership and joint working are key in developing any new diagnostic pathways and in avoiding costly out-of-area purchasing of diagnostic services.
These two diagnostic pathways were highlighted as part of The National Autistic Society and Department of Health Autism Strategy Implementation Project. We invite other local authorities and services that have developed their own diagnostic pathways to get in touch in order for us to highlight these pathways on our website.
To find diagnostic services in your area, visit www.autism.org.uk/directory