By Accountable Care Journal-
Georgia Harper and Jon Spiers represent the Autistica and Embracing Complexity coalition. Georgia and Jon write for Accountable Care Journal on how we must embrace complexity when looking at neurodevelopmental conditions.
Neurodevelopmental conditions (NDCs) affect around one in ten of us. It’s the norm for people with NDCs to have more than one, but far too often, we overlook this complexity in favour of siloed approaches built around single diagnoses.
The need for a more joined-up approach to neurodiversity is a large part of why we set up Embracing Complexity, a coalition of charities spanning neurodevelopmental conditions including autism, epilepsy, ADHD, learning disability, dyspraxia, dyslexia, Tourette syndrome and many more. Since its launch in May 2019, the coalition has grown to around 40 members, all supporting the view that our beneficiaries overlap, that their needs are often similar regardless of their diagnoses and that we can achieve more in unison than in isolation.
Diagnosis need urgent re-evaluation
Diagnosis is one area in need of urgent re-evaluation: receiving a first NDC diagnosis, rather than prompting further screening and exploration, delays subsequent NDC diagnoses even further. Most neurodevelopmental diagnostic pathways are set up to diagnose single conditions, leaving people with multiple NDCs and their families facing years on waiting lists and long, disjointed chains of referrals between healthcare and education specialists.
In October 2019, we published Embracing Complexity in Diagnosis, a report highlighting four neurodevelopmental services which have implemented pathways to diagnose multiple NDCs simultaneously. Most of these pathways were set up through grassroots innovation from clinicians, frustrated with siloed pathways that often leave them facing long backlogs and inappropriate referrals. Our hope is that this report can empower professionals to understand emerging multi-diagnostic models and the principles behind them.
Post-diagnosis, services need to be more inclusive of those with a range of needs. Many people with NDCs receive limited or no specific support for their neurodevelopmental challenges, particularly in adulthood, nor are they supported to understand their strengths so they can achieve their full potential.
Extending support to autistic people
When NDCs co-occur, this challenge is compounded, with potentially tragic results. For example, seizures are a leading cause of early death in autistic people with learning disabilities; yet when we reviewed over 1400 global treatment trials for epilepsy, we couldn’t find a single one which had included autistic people. The result is that we are medicating large numbers of vulnerable people with little evidence of efficacy. We need far more research into the overlap between NDCs so we can create new treatments and pathways which will better support people living with these conditions.
NDCs are also often not accounted for when people receive treatment or support for other physical and mental health issues. For example, in suicide prevention, crisis support is typically offered via telephone helplines – but for autistic people and those with other communication difficulties, calling a stranger to talk on the phone is difficult or impossible. At Autistica, we recently supported a new Samaritans project to develop a text-based crisis support model which could play a major role in cutting the appallingly high suicide and suicidality rates amongst autistic people.
We must embrace complexity and work together
It’s crucial that more services, charities and research funders show willingness to change. Providing holistic, person-centred services to people with many different needs can add cost, time, resource implications and training challenges. But if we don’t embrace that complexity and work together to overcome those challenges, we’re not reflecting the realities of our beneficiaries’ lives and we’re often abandoning those who have the most to gain from the support we provide. We need to do the right thing, not the easy thing.
The current system is not meeting everyone’s needs; to change this, we all need to work together. As practitioners, embracing complexity by considering the possibility of multiple conditions in your patients – and strengthening links with other services both in and outside of healthcare – can make all the difference.