With a current worldwide prevalence of 1% Autism Spectrum Disorder (ASD) refers to a group of conditions that are characterized by impairments of reciprocal social interaction, verbal and non-verbal communication, as well as a preference for repetitive, stereotyped activities, behaviors and interests. The age of onset is always prior to 36 months and the symptoms persist throughout the lifespan. These features are associated with alternations in cognitive and emotional functioning, high rates of psychiatric co-morbidity, relationship problems, poor adaptive skills and lower reported quality of life. To capture this complex melange of functioning experiences beyond the diagnosis, the ICF offers a tool to describe the lived experience of a person with ASD in a comprehensive and standardized way.

To make the ICF, a classification of 1424 categories, more practical for use in clinical practice, ICF Core Sets i.e. shortlists of ICF categories selected as most relevant for specific health conditions, have been developed. Karolinska Institute and the ICF Research Branch in collaboration with an international, multiprofessional Steering Committee have taken on the challenge to develop ICF Core Sets that can be used in the assessment and follow-up of persons with ASD. The project team has decided to use the ICF version for children and youth (ICF-CY) for the study. The ICF-CY not only includes all of the categories of the reference classification ICF, it also captures the particular characteristics of the developing child.

The preparatory phase includes:

• To identify research studies on the functioning and disability of persons with ASD, a systematic literature review of peer-reviewed articles published from 2008-2013 was performed. A paper outlining the results of the literature review was published in Autism Research and can be found here (click here): http://www.ncbi.nlm.nih.gov/pubmed/25820780.
• A qualitative study that aimed to identify relevant aspects of functioning and contextual factors from the perspective of patients/clients, caregivers, spouses, teachers was conducted. Persons from Canada, India, Saudi Arabia, South Africa and Sweden participated in the study either in focus groups or individual interviews. A manuscript is currently being written and will be submitted to a peer-review journal by the end of 2016.
• An internet-based international survey was also conducted. This study that included 225 experts from 10 different disciplines and all six WHO world regions aimed to gather the opinion of international experts on which aspects of functioning and health are relevant to persons with ASD. The results of the study was published here (click here): https://www.ncbi.nlm.nih.gov/pubmed/26749373.
• To describe common problems experienced by individuals with ASD from a clinical perspective, a multicentre cross-sectional study was conducted in 6 European countries, 2 South American countries, one Asian country, and one country in the Middle East. A case record form, that covered among other things the domains of an extended ICF Checklist, was used to collect the data. Completed in August 2016, the results of the study will be submitted for publication in due time.

The results of these preparatory studies was presented at an international consensus conference, a multi-stage, iterative, decision-making and consensus process that took place from 9-11 September 2016 in Stockholm, Sweden. At this consensus conference, ASD experts from different countries worldwide and working in a broad range of professions decided which ICF categories to include in the first version of the Comprehensive and Brief ICF Core Sets for ASD.

The Comprehensive ICF Core Set for ASD contains 111 categories and the Common Brief set contains 60 categories – all at the 2nd level. To reflect the specific characteristics of different age groups of persons living with ASD, a Brief ICF Core Set was developed for the following age groups: pre-school age group from 0-5 years old with 73 categories, school age group from 6-16 years old with 81 categories, and adults 17 years old and older with 79 categories. The manuscript detailing the methodology and the categories of the ICF Core Sets will be submitted for publication in the first quarter of 2017.

For questions, please feel free to contact the project team sven.bolte@ki.se and soheil.mahdi@ki.se.