Developing a clear, consistent pathway for diagnosis of autism
Section 3 of the 2010 Fulfilling and Rewarding Lives strategy sets out the strategy to increase understanding of autism by:
- increasing capacity around diagnosis
- ensuring a diagnosis is recognised as a reason for a community care assessment or reassessment, and
- providing relevant information to adults with autism and their family or carers at the point of diagnosis to help them understand the condition and access local support.
Why is diagnosis of autism important?
For many adults, receiving a clinical diagnosis of autism is an important step towards a fulfilling life. Not only can it help people with autism and their families to better understand their behaviour and responses, but should also help with access to services and support if it is needed.
Diagnosis can be a complex and lengthy process. Adults with autism talk of having to battle hard – sometimes for years – to get a diagnosis, only to find this diagnosis being challenged when they try to access services.
The autism strategy makes recommendations for changing this process, to develop a clear and consistent pathway for diagnosis in every area. Since the strategy was published in 2010, the National Institute for Health and Care Excellence (NICE) has published a guideline on Recognition, referral, diagnosis and management of adults on the autism spectrum.
The guideline states that there should be a multi-agency autism team set up in every area, equipped with the knowledge to offer diagnosis, training for other services and support.
What specific recommendations regarding diagnosis were made in the strategy?
The following information has been copied from the 2010 strategy. We have included clause numbers from the strategy after each point. You can view the full strategy by clicking here. Section 3 on diagnosis starts on page 33.
- The forthcoming [National Institute for Health and Clinical Excellence (NICE)] ... guidelines will set out a model care pathway(s), which will form the foundation for local commissioners to develop referral and care pathways in their areas, supported by their strategic health authority where necessary. (3.9)
- We recommend that local areas appoint a lead professional to develop diagnostic and assessment services for adults with autism. (3.10)
- Increasing capacity around diagnosis. By 2013, when this strategy will be reviewed, we expect there to be a clear pathway to diagnosis in every area. (3.11)
- While developing the forthcoming clinical guideline, NICE will consider how to make the diagnostic process more accessible and consistent. (3.13)
- Diagnosis of autism should be recognised as a reason for assessment [under the NHS and Community Care Act 1990]. (3.14)
- It is best practice that diagnosis of autism is recognised as a catalyst for a carer's assessment. (3.19)
- Reviewing eligibility criteria for social care: In response to concerns about the way in which Fair Access to Care Services (FACS) guidance, issued by [the Department of Health] ... in 2003, has been implemented in some local authorities, and in recognition of the vital new policy context articulated in Putting People First, the Commission for Social Care Inspection (CSCI) was asked to review the application of eligibility criteria for social care and its impact on people. (3.23)
- Following their recommendations, FACS guidance has been revised and will be published in February 2010. This aims to support fair and transparent implementation of eligibility criteria, within the new policy context of personalisation and prevention, and will act as a bridge towards wider social care reform. It also reiterates that people who do not meet the eligibility threshold should still be able to expect adequate signposting to alternative sources of support. (3.24)
- Providing relevant information to adults with autism and their family or carers at the point of diagnosis. (3.26-3.27)
- To help local authorities and [Primary Care Trusts (PCTs)] ... develop the right kinds of information, the forthcoming statutory guidance will provide more details of what information adults with autism and their family or carers are likely to need after diagnosis. (3.28)
The need for clear, consistent diagnostic pathways has been clearly detailed in past publications, as has the benefit in terms of cost saving. The challenge now lies in trying to develop these pathways in difficult financial times. Creative and innovative diagnostic pathways will be required to meet the challenge of setting up diagnostic services in every area of the country.