This blog post presents a response from researchers and academics at from the Institute for Social Justice and the RNWC (Research on Neurodiversity, Wellbeing and Counselling Group) at York St John University to the Humber and North Yorkshire Health and Care Partnership’s changes to the referral pathway for autism and ADHD diagnostic assessment for adults. These changes have been prompted by concern about the limited resources within the current contract value to complete assessments, alongside a continual growth in referrals – there are currently 1560 people on the waiting list with an average wait of 20 months (1800 further referrals had not been triaged and will have the new criteria applied to them). However, while we recognise a need to prioritise resources to the most at-risk adults, we believe that the changes as they stand have a number of significant risks.
Changes to diagnostic assessment
The North Yorkshire Health and Care Partnership is currently piloting the introduction of acceptance criteria for referral, meaning only people who meet one or more of the following criteria will receive diagnostic assessment for autism and ADHD:
- Those who are at immediate risk of self-harm or harm to A mental health assessment is required to have been undertaken and a crisis management plan put in place.
- Those at risk of being unable to have planned life-saving hospital treatment, operations, or care placement.
- Those at imminent risk of family court decisions determined on
As of Monday 27th March 2023 referrals are directed through a web-based screening and assessment system called Do-It Profiler.
Concerns with the current changes
We draw on a research evidence perspective to highlight five key issues with the current changes to diagnostic assessment.
- There is potential to incentivise already vulnerable groups to self-harm. Autistic adults are more than three times as likely as non-autistic people to engage in self-harm (Blanchard et , 2021). Research into self-harm in those with ADHD is more limited, but indicates that there is a significant link between severity of ADHD experiences and self-harm and suicidal behaviour (Taylor et al., 2014). Given the pre-existing vulnerability to self-harm and suicidality in these groups, one can predict that not having access to diagnosis and the support services will make these groups more likely to engage in these behaviours as coping strategies. At the same time, the inclusion of self-harm and suicidality (as indexed by a mental health crisis plan) as one of the criteria used for referral to diagnostic service, may incentivise this already vulnerable group of people to start self-harm behaviours or intensify behaviours already being used as coping strategies. Furthermore, lack of access to support services, most of which require a diagnosis to access, is likely to lead to higher rates of autistic/ADHD burnout, which research suggests is itself linked to an increase in self-harm (Arnold et al., 2023).
- There may be a disproportionate impact on already marginalised groups. Research indicates that people who are already marginalised in some other way, such as through race, gender, SES or disability, find it more difficult to access diagnosis for autism or ADHD (Saxe, 2017; Liptak et al., 2008; Morgan et al., 2022). Marginalised groups such as these may also be less likely to receive medically and culturally appropriate support from health services such as their GP or CMHT (Gee, 2002; Thornicroft, 2008; Kcomt, 2018). The stringent criteria being applied in this pilot further limit access to services for groups who already struggle to access appropriate healthcare. It is unclear if an Equality Impact Assessment has been carried out in the decision-making process.
- Measures used for people who don’t meet inclusion criteria are self-administered. This may not be the most effective way of assessing individuals’ experiences, as neurodivergent people may need more support in order to use these measures in a helpful way. Practitioners highlight that further research is needed regarding the efficacy of self-support measures outside of school setting for neurodivergent people (Chia, Anderson & McLean, 2018). It is likely that many autistic or ADHD individuals will not be able to access diagnostic services under the current pilot, and their mental health may deteriorate as a result of not being able to access support from healthcare professionals.
- The criteria for success / failure of the pilot need to be more clearly defined and in a way which is co-produced with stakeholders. At the moment, we know that Healthwatch will collect feedback on the pilot, but it is not clear who they will be collecting feedback from or whether other parties will be examining the outcomes of the pilot. Moreover, the lack of co- production within decision making to this point raises ethical questions which highlight the need for stakeholders to be included. User feedback will be invaluable in terms of assessing the lived experience of those who have attempted to access autism or ADHD diagnostic assessment. However, other data will also be relevant in understanding the broader impact of the criteria used in the current pilot. This might include, for example, demographic information around who is able to access services, data from other mental health services, data around access to benefits and work-related support, amongst other factors.
- The current pilot period is set to run for three months. We do not believe that three months is a sufficient amount of time to understand the consequences of the implementation of these criteria, particularly in terms of the longer-term effects on mental health and wellbeing. One risk of the current pilot is that individuals are not deemed eligible for diagnostic assessment and consequently become more unwell over time due to lack of support and access to services. It may take longer than three months for these detrimental effects to be seen, which would not be captured by the current pilot. In this way, the pilot may fail to identify potentially negative consequences that result from the implementation of the new criteria. Other issues, such as increased demand on other services due to reduced access to autism/ ADHD assessment, may also not be evidenced within a three-month time frame.
On the basis of these concerns, the undersigned suggest that the current diagnostic process needs to be urgently readdressed to ensure that changes do not have a negative impact on vulnerable individuals. Specifically, further consultation must include key stakeholders and full engagement with research evidence highlighted above.
Dr Ruth Knight, Dr Brett Heasman, Dr Lorna Hamilton, Prof Matthew Reason, Hilary Conroy, Helena Fitzpatrick, Lucy Potter, Dr Catherine Heinemeyer, Luciana White, Rebecca Robinson, Sue Mesa, Kathryn Lewis, Dr Jonathan Vincent, Natasha Fiberesima, Cheryl Reid, Eleanor Burton, Dr Trish Hobman, Prof Divine Charura, Lisa Parfitt.