7. “I want a timely diagnosis from a trained professional. I want relevant information and support throughout the diagnostic process.”
In 2013, the majority of people newly diagnosed with autism were children. The DfE and DH have worked closely over a number of years to encourage early identification of potential autism and to link this with relevant support in schools. However, there is a very significant group of adults, including many older adults, who were not diagnosed as children, mainly because autism wasn’t very well recognised in the past.
Diagnosis can be particularly important for adults who did not have their condition recognised as children. Their life to date may have been affected by a sense of not fitting in, of not understanding the way they respond to situations or why they find social settings difficult. They may also have been in learning disability or mental health services, where their autism was not recognised or supported. A diagnosis can be an important step in ensuring that support takes account of how a person’s autism affects them and their whole family.
GPs are usually the gatekeepers to diagnostic services and need to have a good understanding of the whole autistic spectrum and the diagnostic pathway that has been developed in their area. This will enable adults with autism to be supported more effectively from the start of their assessment process.
We have taken a number of steps since 2010 to support local areas to develop a clear pathway to diagnosis and post-diagnosis. In every local area, health services should have a pathway to diagnosis, just as the local authority will have a clear framework for assessing the care and support needs of children and adults with autism. We will continue to ask local areas to assess their progress on this through the local area self-evaluation exercise.
To help standardise and improve the care and management of autism, and to enable health and social care services to support people with autism more effectively, the National Institute for Health and Care Excellence (NICE) has published three clinical guidelines on autism and a quality standard.
NICE has also produced (details of which are found in useful resources):
- an Implementation Pack: developing a multi-agency local autism team, to support local areas;
- a series of costing tools; and
- ‘Support for Commissioning‘, which outlines the key actions that commissioners should take to deliver the quality improvement outlined in the NICE quality standard.
DH has also supported the work of the Joint Commissioning Panel (JCP) for Mental Health, a collaboration between seventeen leading organisations, co-chaired by the Royal College of Psychiatrists and the Royal College of General Practitioners. They have looked at how to encourage commissioners to use a values-based commissioning model. The JCP will issue a practical guide on autism by September2014. (Action 16)
The comprehensive suite of tools available will enable local areas to ensure there is a clear pathway to diagnosis in every area. It is not expected that a specialist diagnostic team or service will be located in all areas. However, there is a duty for each area to have an easily accessible autism diagnostic service and for people such as GPs to be aware of the pathway.
DH will ensure that NHS England are fully aware of this evidence and guidance on diagnosis so they can determine how to take account of it, along with the Care Quality Commission (CQC) in its wider statutory role in primary and secondary care in driving up quality. (Action 17) The Autism Programme Board will seek updates from CQC and NHS England on how they are doing this. DH will also reflect the guidance on diagnosis in the updated statutory guidance for the Autism Strategy later this year.
Diagnosis in Bristol
The Bristol Autism Spectrum Service (BASS) is a multi-agency, specialist autism team providing a range of services to adults with autism and the professionals working with them. In terms of direct work with people with autism, the team provides a diagnostic clinic accessible from primary care, and a programme of post-diagnostic support delivered through a weekly autism Advice Service. The Advice Service is available to anyone with autism in the local area, but is targeted at people who are not eligible for social care services. Its aim is to offer timely, easy-to-access support designed to increase peoples’ wellbeing and levels of social inclusion, and to prevent them from experiencing avoidable crises. Interventions offered include 1:1 sessions with BASS staff and volunteers around problem-solving, signposting, employment support, housing, and benefits advice, and a range of groups, including: post-diagnostic support, mindfulness, and anxiety management.
Given that people with autism should also be able to access support from mainstream services, BASS work closely with providers in the statutory and voluntary sector to enable them to develop their skills around working with people on the spectrum, through the provision of specialist training and liaison. Crucially, the team do not take on care management responsibility – this remains with the referring agency – but instead offer intensive ongoing support and supervision to health and social care professionals to enable them to provide the best and most autism-friendly service possible to their clients.
For further information contact: firstname.lastname@example.org