It’s time for charities to embrace complexity By Jon Spiers, CEO of Autistica, Chair of the Embracing Complexity coalition and trustee of the AMRC Published: 26 July 2019 Multimorbidity is a hot topic for many researchers and charities and for the AMRC too. As recognition grows that more and more of us are living with multiple conditions, both acute and chronic, we must reflect on whether we’re going far enough as charities to reflect that in the research we fund and support. Too often, studies include unrepresentative samples of participants, with the more complex excluded explicitly by study inclusion criteria and implicitly by study designs which don’t make it easy for people with a variety of needs to take part. Too often, research doesn’t offer beneficiaries the opportunity to set joint priorities, co-create meaningful studies and make sure research reflects the realities of their lives. Too often, our expertise in supporting our beneficiaries to participate in research stays within our own organisations so other funders discount including them as “too complex” or “too risky”. At Autistica, we think about these challenges a lot. Our globally leading involvement work with our community makes clear time and time again that what many autistic people and family members want from research are better ways to deal with the issues which sit alongside their autism. Although we’re nominally an autism charity, an increasingly large chunk of the work we fund is about co-occurring conditions not just autism itself – in just the past couple of years, we’ve funded studies into suicide, anorexia, depression, anxiety, epilepsy, learning disability and gastro-oesophageal reflux. Yet autistic people have traditionally been excluded from the vast majority of medical research so we know very little about why they’re more likely to experience and die prematurely from a range of health conditions, from cancer to mental health issues to neurological disorders. For example, up to 40% of autistic people have epilepsies, which are often resistant to traditional therapies and which put them at hugely higher risk of dying young. But when we reviewed over 1400 global treatment trials for epilepsy, we couldn’t find a single one which had included autistic people. So some of those at greatest risk have never been included in research which could reduce those risks. That’s why we’re delighted to be working with fellow AMRC members Epilepsy Research UK to co-fund a new fellowship focusing on the intersection between autism and epilepsy. By identifying and supporting a future leader in the field, we hope not just to advance our understanding of how and why the two conditions overlap and better ways to treat seizures but also stimulate much broader interest in the academic community, multiplying the impact of our investment. And it’s not just a research challenge of course. The services charities offer also need to be more inclusive of those with a range of needs. In suicide prevention, for example, the overwhelming majority of crisis support is offered by charities 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 the best of times, let alone when you’re in crisis. Autistica 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. It’s only one step on the road towards better outcomes but collaborations like this are fundamental so solving the most intractable issues. So we need to see many more charities willing to join forces for the good of the people we serve. Having more than one health condition is increasingly the norm for swathes of our population but it’s easy to “stay in our lane” and keep funding research and services which exclude people with multiple diagnoses. That’s not meant as a criticism of charities’ past actions. Research is tougher when we have to account for more than one condition: we have to deal with complexity in participants’ needs, differences in how they view research, consent and ethics issues for more vulnerable populations, polypharmacy and a host of other important issues. Providing services to people with many different needs adds cost, time, resource implications and training challenges. But if we don’t embrace that complexity and work together to overcome them, we’re not reflecting the realities of our beneficiaries’ lives and we’re often abandoning our beneficiaries who have the most to gain from medical research and from the services we offer. We need to do the right thing, not the easy thing. The need for more trans-diagnostic research was one driver for my setting up the Embracing Complexity coalition, a new group of charities spanning neurodevelopmental conditions including autism, epilepsy, ADHD, learning disability, dyspraxia, dyslexia, Tourette syndrome and many others. Only two months after we began, we now have over 30 charity members, all backing the core beliefs that our beneficiaries overlap, that their needs are often similar regardless of the diagnoses they’ve received and that we can achieve more to help them in unison than in siloes. We hope to stimulate more research which crosses diagnostic boundaries, more lobbying and campaigning which tackles the common challenges of the 10% of us who have neurodevelopmental conditions, and more awareness work to help everyone understand the need to embrace not deny the complexity of people’s wants, desires and hopes for the future as well as their challenges. AMRC has a crucial role to play in convening, cajoling and challenging members to think differently about multiple conditions. If we as members all committed to just one collaboration with another member in the next 12 months, think how many unique and impactful studies we could create. Think how we could use our power as funders to influence thinking in academia and policymaking. Think about how we could better meet the needs of the people we serve. The time is now.