NEUROLIFE maps experiences with and perspectives on living conditions, participation, and public services among young people with the neurodevelopmental diagnoses ADHD, Autism and Tourette's Syndrome. A disproportionate number with these diagnoses struggle mentally, physically, socially and financially, and today’s public services only contribute to a limited extent to remedy such burdens.
More and more people in the target group are uncomfortable with, and react to the pathologising that comes with the label "diagnoses". We will largely use the more recent terms of neurodiversity and neurodivergent (ND), hoping to help reduce the stigma that results from terms like "illness", "disorder" and "deficiencies", and look at how norm-breaking functional variations are related to discrimination in a society structured by the neuromajority/neurotypicals (NT).
NEUROLIFE asks: What makes some young ND adults live good lives today? And: how can public services internalise knowledge about who is living a good life and why, in a way that makes the contribution of the services more appropriate? The project will be based on a broader theoretical discussion of what it means to live a good life, and an exploration of the social processes and mechanisms that helps some people live good lives and not others. The project also seeks to be methodologically innovative, and will in particular examine opportunities to achieve a broader participation from the target group by developing information gathering methods that suit different parts of this community. The project includes three work packages (WP) with different data sources. WP#1 explores variations in living conditions and public service experiences through qualitative interviews and focus groups. In WP#2, we analyse data from public registers to look at education, work situation and service use, while in WP#3 we use a survey to learn more about the conditions under which young ND in Norway, Sweden and Denmark might live good lives.
The NEUROLIFE project aims to produce knowledge for better service provision, well-being, and social and work-life inclusion of youth and young adults with neurobiological diagnoses (NBD) such as attention deficit/hyperactivity disorders, autism spectrum diagnoses and Tourette syndrome, in the Scandinavian context. An increasing number of children receive these diagnoses, warranting more group-specific research. NBDs are qualitatively different from some other disabilities, being “invisible”, and involving challenges with executive, sensory, cognitive and mental health functioning. Research on the interrelationships among health, service provision, living condition and inclusion in the NBD group is generally lacking. This project targets youth and young adults (13 to 29 years) with NBD, and their siblings and caregivers. Given the considerable potential of many individuals in this population, knowledge of their successful development experiences is key also to future success. The project therefore will focus on identifying positive deviance – understood as paths leading towards inclusion for youth and their families. Surveying the specific characteristics of the NBD population poses certain challenges, as the group may be harder to engage than a similar neuro-typical population. The project will tackle this challenge by applying a mixed-methods approach, combining qualitative research, register data analysis and an innovative survey using respondent-driven sampling (RDS), a survey methodology designed to estimate representative data from rare and elusive populations. With regards to theory, the project draws on Goffman (1963), Hacking (1995) and Tylor (2013 and 2020), in studying how NBD classification may trigger stigma, social inclusion/exclusion mechanisms, and looping effects as the group reacts to identities and social responses related to classification. The project emphesizes close user involvement throughout, with persons with NBD, caretakeres, and services.