ABSTRACT
LAY ABSTRACT: Autistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people's situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0-5, 6-16, and ⩾17 years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4 years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders.
ABSTRACT
LAY ABSTRACT: Autistic adults in the United Kingdom report that support for themselves and their peers is not suitable for their needs. There has been an increase in adults receiving an autism diagnosis, which many have reported as having a positive impact on their lives. However, the lack of support and understanding after diagnosis, combined with long wait times for an assessment to obtain a diagnosis and to access follow-on support, is having a negative impact on people's lives. This study took place to find out what support autistic people need and want after receiving their diagnosis. It was co-designed with a group of 10 autistic adults which means that the researchers and group members collaboratively designed the research. For the study, 43 autistic adults, diagnosed aged 18 or older, completed three questionnaires. A fourth questionnaire followed that was completed by 139 autistic people who received their diagnosis in adulthood. These questionnaires aimed to help people identify their own priorities when it came to the support they would have liked to receive after being given their autism diagnosis. Participants ranked access to support where they live, training of professionals, support to process the impact of a late diagnosis, use of their preferred mode of contact and a personalised support plan as their top priorities. This demonstrates that local support is highly valued by autistic adults, as are well-trained professionals who offer a range of contact options, support to process a late-in-life autism diagnosis and help to develop and implement support plans.
