An extract from a practitioner article by Marion O'Shea on the need for practice-based evidence to inform support in the context of neurodiversity.
In our work as practitioners, empirical research can help us to determine the efficacy of the approaches that we use. The impact of empirical research cannot be underestimated. Such research can help us to make sense of the world around us, as well as influence the products we buy, the medical treatment we receive, and even our social and political views. However, this is not always a unilateral relationship. The views, interests and attitudes of social groups and communities can also influence the research that is conducted. In the past, research in fields such as biology, anthropology, psychology and sociology often served the implicit, or sometimes explicit, biases of the time. Academic researchers have found evidence to show that these biases remain present in empirical research, and can be affected by skin colour, ethnicity, religion, gender identity, sexual orientation, weight, physical, or mental disability, among others (Greenwald and Krieger, 2006; Staats et al., 2014). Calaza and colleagues (2021) discuss how scientific evidence shows the presence of implicit bias in the academic community, which contributes to significantly damaging unconscious evaluations and judgments of individuals or groups, such as Black and Latina women. In recent years, there has been a move towards making research more representative of the diversity that we see around us. As a practitioner, I believe that practitioners can work in partnership with researchers to bring about this change. In this article, I will be discussing this in the context of neurodiversity.
Scientific research guides practice in a number of fields, which is referred to as evidence-based practice. In psychology, evidence-based practice is defined as the integration of the best available research with clinical expertise in the context of patient characteristics, culture and preferences (American Psychological Association, 2005). In this article, we are concerned with the context of a person, described above as a ‘patient,’ and their experiences. If their experiences are not represented in the ‘best available research,’ then we must reflect on the evidence-based practices that we as practitioners are applying, and question whether these clinical practices are meeting the needs of the people we are supporting.
In what ways can the complexities of a person’s presentation and lived experience be overlooked? Some researchers posit that evidence-based practice proposes a particular, deterministic version of rationality (Webb, 2001). Scientific research is often focused on what is ‘measurable,’ for example, behaviour and measurable outcomes are often observed in a controlled environment in an attempt to isolate the findings. When we apply this approach to the field of psychology, the nuance can sometimes be overlooked. More and more we are seeing that it is difficult to isolate single, measurable, observable items.
In measuring these outcomes, research methods in empirical research are often concerned with group comparison. These methods seek homogeneity within these groups, and attempt to control for any variance within that. For example, Randomised Control Trials (RCTs) are considered the gold standard in empirical research methodology (Beail, 2010). In RCTs, subjects/patients are randomly assigned one of two groups, experimental or control: those in the experimental group will receive the intervention that is being tested, and those in the control group receive an alternative intervention, or no intervention. RCTs look for group effects to assess the efficacy of an intervention.
In recent years, there has been a move towards research that is more inclusive and representative of groups. In order to inform clinical practice, it is imperative that empirical research is representative of the experiences of individuals. When large-scale RCTs have been employed to measure outcomes in the area of psychology, they have been criticised as they tend to overlook nuance and diversity in favour of viewing populations as homogeneous groups. RCTs can therefore have poor success in predicting outcomes at the individual level from data gathered at the level of group means (Margison et al., 2000). The importance of representative sampling is beginning to be further explored in the research (Hussain‐Gambles, Atkin, & Leese, 2004).
On the other hand, practice-based evidence integrates individual clinical expertise and service-level parameters with the best available evidence on research topics. This ‘bottom-up’ approach to gathering evidence contrasts with the ‘top-down’ approach utilised by RCTs (Freeman & Power, 2007). Practice-based studies are beginning to look at measures and controls for heterogeneity of patients, treatments, and outcomes seen in real-world clinical settings (Horn & Gassaway, 2010). Methodologies such as Comparative Effectiveness Research (CER) are put forward as an alternative to RCTs and explore what works best for specific patient presentations, which will then inform treatment recommendations for individual patients.
The concept of practice-based evidence is also becoming more commonly used to reflect practices in local communities and minority groups. Researchers in Native Communities in the United States have begun to develop and research evidence-based practices that have been adapted to meet the needs of Native Americans, who may not be represented in other empirical research (Bartgis & BigFoot, 2010).
Scientific experimentation is based on measurable outcomes. In order to produce empirical research, psychology can sometimes oversimplify complex concepts such as emotion, social impairments and therapeutic approaches. Furthermore, in our goal to make research generalisable, we may be overlooking cultural and social contexts that can have implications for an individual’s subjective experiences. When we look at lived experience, we can gain a more subjective description of psychological and social constructs. Empirical research attempts to control for confounding variables, but we cannot control for confounding variables in our practice, or in day-to-day life. Practice-based evidence incorporates the complexities of the wider context surrounding an individual’s presentation. In practice-based evidence, real world practice is documented and measured as it occurs (Swisher, 2010).
Autism: The Medical Model of Disability vs The Neurodiveristy Paradigm
In recent years, there has been a call for more representative and inclusive research by autistic people. Historically, the production of empirical research in the area of autism has largely excluded autistic voices. In this article, I pose the question, if evidence-based practice is centred around developing clinical expertise in the context of patient characteristics, culture and preferences, then why does empirical research often overlook the contexts and experiences of autistic people?