Asperger support needs
Background and aims
People with autism spectrum disorder and average-to-highly gifted cognitive abilities, in many cases described as Asperger Syndrome (AS) or high-functioning autism (HFA), have more often been in the centre of attention in public news coverage in recent years. In the foreground of the quite resource-oriented public portrayal are, for one, the special cognitive skills of persons with AS and, for another, the persistence in dealing with specific specialist topics and the pursuit of self-defined objectives.
In the broad reporting today, little attention is given to the psychological distress that many people with AS and their families also experience and to the subsequent need for action. On the contrary, in part the diagnosis is relativized in its complexity and seriousness through the choice of notions such as “fad diagnosis”, “en vogue”, or “chic”.
This research project addresses this conflict between resource orientation and problem perception by means of a differentiated analysis of support needs and support measures, without losing sight of the individual resources and competencies.
Applied to the group of people especially important for the special education context—children and adolescents with AS or HFA—the main research question is the following:
What is the best possible way to analyse and describe the support needs of children and adolescents with AS/HFA in the different areas of life (such as everyday life, family, school, free time)?
This research project is participatory and involves the following steps:
- Discussion of the research steps and contents with experts who are affected personally (Discussions with specialists with AS): The first step is presentation and discussion of the project planning with selected experts that in addition can contribute their own experience due to their personal life with AS. This inside view offers the opportunity to adapt the research approach in its content and method based on a participatory perspective.
- Theory-supported design for systematic analysis of support needs and support measures in different areas of life: A differentiated look at the international specialist discussion in combination with the discussions conducted beforehand will form the central basis for development of an initial design for systematic analysis of support needs and support measures.
- Conducting and evaluation of expert interviews on the systematic analysis of support needs and support measures: In this third step, in discussion with specialists we will review and re-examine the design for systematic analysis of support needs and support measures. We will interview both specialists with AS and neurotypical specialists who work as educators or therapists with children and adolescents with AS/HFA.
In summary, this research project is focused on gaining evidence-based findings on individual support needs and providing appropriate support measures for children and adolescents with AS and their families.
By designing a systematic analysis of support needs and support measures in different areas of life that considers the perspectives of various actors (including persons with AS, specialists), the project will generate a basis for an extended empirical analysis that aims at the formulation of indicators for specific support needs and a catalogue of goals for support measures in the areas of school, therapy, free time, and family.