To provide timely and effective support, we need to understand more than symptoms and diagnoses. Researchers at Karolinska Institutet are therefore working to make it easier to build a holistic picture of how an autistic person or a person with ADHD functions in everyday life and in their surrounding context. The aim is to enable earlier, more individualized support-both within healthcare and beyond.
Sven Bölte is Professor of Child and Adolescent Psychiatric Science and Director of KIND ( Center of Neurodevelopmental Disorders at Karolinska Institutet ), and leads the long-term work behind the study.
"To me, it is clear that we need to shift focus from always starting with which diagnosis an individual may have, to first thinking in terms of functioning," he says. "More stakeholders than healthcare need tools to understand how a person functions, what is easy or difficult, and which environmental factors have an impact. This makes it easier to provide individualized support early, where difficulties are identified-for example in school, leisure activities, or the workplace."
The research group is therefore working to make the World Health Organization's system for describing functioning, the ICF, more manageable and usable for autism and ADHD. The ICF is designed to describe how body functions, including cognitive abilities, activities, participation, and environmental factors interact and influence an individual's functioning. The system has long been recommended by the Swedish National Board of Health and Welfare, among others, but is often perceived as difficult to use in practice. This is where the ICF Core Sets for autism and ADHD come in.
"Our ambition has been to move from a theoretical framework to something that can actually be used," says Sven Bölte.
Broader participation leads to more useful results
The ICF Core Sets study has so far collected data from approximately 16,500 participants, who have rated their own or a family member's functioning via a digital platform. Sub-studies show that participants appreciated that strengths, challenges, and environmental factors were made visible.
"Many have also appreciated the summary they receive after completing the assessment".
The study was initially open to everyone, with or without a diagnosis.
"We want comparison groups without diagnoses, but the ICF Core Sets are also intended to be used as a basis for individualized support for children or adults with traits of autism or ADHD, without or prior to diagnosis".
Researchers now need to supplement the data with more participants in certain groups to ensure the results are as useful and reliable as possible.
"We do not only want to describe overall patterns of functioning in autism or ADHD. To make the results meaningful, we need to examine variation within the groups-for example women with ADHD, autistic adolescents, individuals who have received substantial support or little support, and people with both autism and ADHD", says Sven Bölte.
To carry out such analyses, the material needs to include sufficient representation across different ages, genders, life situations, and diagnostic combinations.
The research group is therefore seeking:
- Parents who rate their children (all ages), with or without autism or ADHD
- Older children and adolescents who rate themselves, with or without autism or ADHD
- Adults with autism and/or ADHD diagnosis who rate themselves
Toward a More Functional Perspective
The ICF Core Sets are intended to complement diagnoses and, over time, be used in several contexts, such as healthcare, schools, social services, and elder care.
"How someone functions in everyday life often says more about what support is needed than the diagnosis itself. If we can standardize a functional assessment using the ICF Core Sets, this creates better conditions for individualized support", says Sven Bölte.
When data collection ends in spring 2026, the next phase will begin. The results will form the basis for further research, analyses, and work on how the ICF Core Sets can be used and implemented across different sectors.
