Discussion

This study describes in the context of the UK publically funded National Health Service (NHS) healthcare system, the autism diagnostic services provided by CDTs and the progress toward achieving the recommendations described in the NAP-C (2003). More than half the respondents now have clear assessment pathways. However, it is disappointing that only one-third of teams had a defined timescale during which assessment should be completed and of those teams, just under half were able to meet the target of 30 weeks. These data suggest that a majority of families with a child with ASD are waiting longer than suggested in the NAP-C for their child's diagnosis. Our findings should also be considered in relation to the current NHS 18 weeks target from patient referral to the commencement of treatment. While the effect on families was not a focus of this study, these delays in diagnosis are likely to cause families hardship, and in some cases reduce access to services and support. Perhaps most crucially, in some parts of the UK, access to ASD specific intervention strategies is dependent on a confirmed ASD diagnosis; this delay in diagnosis occurs at a time when interventions may ameliorate disability and improve functional outcomes.

The majority of CDTs now use one or more standardised autism diagnostic assessments during diagnosis. There is greater access to important members of the multidisciplinary team. For instance, educational psychologists are now represented in two-thirds of CDTs; this is particularly welcome as educational placement and intervention strategies are often the focus of parents' questions to health professionals. That one-quarter of CDTs do not offer parents a multidisciplinary feedback discussion is concerning. The recommendation made by NAP-C about written care plans for families has not been implemented by the majority of services.

The strengths of this study are that data were collected from across the UK, which increases the likelihood of gaining a representative view of current UK practice. Respondents were asked to report current service provision and highlight service/resource constraints, with the aim of encouraging responses from a representative sample of CDTs, and decrease the risk of reporting bias. There are likely to be several reasons why the response rates between 2001 and 2007 were different; one possible reason is that some clinicians did not respond as fewer than expected improvements had been made at their CDT. Conversely, clinicians whose services were not meeting NAP-C standards may have been more likely to respond, and draw attention to the increased need for resources. However, the findings of this survey robustly show that considerable improvements are still necessary in the assessment services offered by some CDTs. The study's limitations include that comparisons between 2001 and 2007 data cannot be made in all areas. Further, the changes described in this paper have taken place between 2001 and 2007 and therefore the extent to which the NAP-C (2003) contributed to the change cannot be fully assessed. Increased awareness about ASD, the increased number of detected cases and subsequent pressure on autism diagnostic services might have led to improvements without the NAP-C. Nonetheless, the NAP-C guidance has probably increased pressure on NHS Trusts and Primary Care Trusts (PCTs) to provide timely and comprehensive multidisciplinary diagnostic services.

Why might some services have been more successful at meeting the NAP-C recommendations than others? From responses we have received, and subsequent discussions following national presentations (RCPCH conference 20084), teams meeting the NAP-C recommendations have rarely received more funding, but rather have reconfigured existing clinical services. Improved multiagency assessments were also reported, notably involvement of educational psychology. Several responders highlighted the limited capacity of specific disciplines to meet the clinical need (such as speech and language therapists) and suggested this may have contributed to delays in completion of assessments. Therefore, according to this study, modification alone, has not led to sufficient change in waiting times for assessment. It is likely that teams require additional clinical resources to ensure that children with ASD and their families receive equitable and timely access to diagnostic services.

Preece and Mott5 highlighted the need for targets for the assessment of all children with neurodevelopmental disorders, rather than just focusing on children with ASD. Further data about diagnostic services for children with non ASD and autism spectrum developmental disorders will become available during 2010 following the UK British Academy of Childhood Disability CDT Survey (Jolleff, Parr and Gibbs, manuscript in preparation). With reference to ASD, the Scottish Intercollegiate Guideline Network recommendations6 are likely to influence clinical practice in Scotland. The National Institute for Clinical Excellence guidelines for the assessment and diagnosis of children with ASD in England and Wales are expected in 2011. The National Institute for Clinical Excellence guidance is a further opportunity to address current discrepancies in service provision and ensure that children with ASD and their families access comprehensive diagnostic services in a timely manner.