Developing a multi-agency assessment pathway for children and young people thought to have a PDA profile in Solihull

Dr Lisa Summerhill and Kate Collett
Lisa Summerhill is the Lead Clinical Psychologist working in a specialist NHS autism assessment service. Kate Collett is the coordinator of the specialist post diagnostic autism team provided by the Local Authority.
In the Solihull Borough there has been an increasing demand for assessment for Pathological Demand Avoidance (PDA) from all quarters – parents, CAMHS, paediatricians and schools. The highest demand has been for children and young people (CYP) who have already been diagnosed with ASD. A clear assessment and diagnostic pathway was needed to respond to this increasing demand and to challenge systems to work differently to meet the complex needs of CYP referred for this type of assessment.
An initial assessment by the service identifies non ASD, ASD or ASD with demand avoidant features. The comment on demand avoidant features then flags up the potential need for further follow-up work to the post-diagnostic team. One aim of the new pathway was to ensure that initial recommendations by the assessment service and post diagnostic team had been properly implemented, and if those were implemented but not proving effective in meeting needs, to look at how the advice needed to be adjusted.
A multi-agency approach involving ‘assessment over time’ was developed, as outlined in the pathway diagram below.  This model was based on the principle of assessment through intervention and evaluation of the impact of intervention.

This approach ensured a process of evidence building and ruling differential/co-occurring difficulties in and out - including systemic issues. An important aspect of the pathway is that the implementation of strategies is needs-based and not dependent on a specific diagnosis being given. In addition, effective implementation of ‘PDA strategies’ in all settings would be considered as evidence of the benefit of a diagnosis of PDA. After the process of evidence building, the final step in the model was a multi-agency consultation meeting with the autism assessment service, to support reaching a diagnostic decision, not further direct assessment with the CYP, unless absolutely necessary. 
As part of the development phase of the pathway, all staff in the autism assessment service, the Community Paediatricians and the specialist teachers in the post diagnostic service were trained in understanding the profile of PDA in comparison to differential explanations, functional analysis (a model of observing behaviour to determine the function of behaviour), as well as the strategies to implement that help an individual with the PDA profile. In addition the pathway was disseminated to all schools in Solihull through the SENCo conferences and the Autism Leads meetings and it was also presented at the Solihull and Birmingham paediatrician conference.
This pathway harnesses the knowledge, skills and experience of the most appropriate professionals to advise children/families and schools about how best to support CYP and has proved cost-effective. Referral rates have remained steady with an average of two referrals per month. Next steps will involve ongoing evaluation of the pathway and outcomes.
For more detail please see Good Autism Practice issue 19(2), 2018.

Please Note  

This pathway is only available to those living in the Solihull area and must be followed as laid out. 
Professionals and parents outside of Solihull need to take this example to their NHS Clinical Commissioning Group and Local Authority as an example of good practice.