Abstract
Quality of life is generally assessed through objective measures including conditions relating to material living, productive activity, health measures, education levels, and economic standing. In contrast, wellbeing is a complex process involving subjective evaluation of the qualities and experiences that make life good. Research is plentiful with studies exploring autism and quality of life. Less information is available relating to wellbeing and autism, especially from first person perspectives. This research explored how autism characteristics shape understanding and experiences of wellbeing in individuals with characteristics of high functioning autism. The study made use of a multi-method research framework, integral methodological pluralism (IMP), based on Ken Wilber's integral theory, for gathering and understanding knowledge from diverse perspectives, styles, and methodologies. Findings contributed towards a more coherent and inclusive understanding of personal wellbeing in high functioning autism.
TopIntroduction
As a whole, individuals with high functioning autism do not tend to have better life outcomes than those with more severe forms of autism (Hofvander, et al., 2009). Studies indicate that few individuals with autism live independently and that they experience higher levels of antisocial personality disorder, substance abuse problems, and mood and anxiety disorders. Despite having normal IQs, less than half are generally employed (Eaves & Ho, 2008), the majority have never been in a long-term relationship (Hofvander, et al., 2009), and a higher percentage of this population express suicidal thoughts (Eaves & Ho, 2008). In general, people with high functioning autism are often unable to meet their potential and suffer a decreased quality of life (VanHeijst & Geurts, 2014).
Alberta’s education system has seen a significant increase in the number of students diagnosed with, or exhibiting characteristics of, high functioning autism (Clarke, Dudley, Dutton, Emery, & Ghali, 2014). These students tend to be academically capable, but their prospects beyond school are often bleak. Increased understanding of their condition and strategies to support their needs are more likely to be implemented now than in previous years, but the current approach to accommodating these students’ needs lacks consistency and reflects a reactive rather than proactive approach. To shift to a proactive position requires an inclusive, integrated perspective that focuses on the long-term implications of high functioning autism as well as the symptoms that manifest in the classroom. C.D. Ryff’s model for psychological well-being (Ryff, 1989) was used to explore improved understanding of the long-term implications of high functioning autism, with IMP providing methodological framework for collecting data that reflected inclusive and integrated perspectives. All Quadrant (AQ) mapping was used to enhance the value of understanding from the literature review, establish the design framework and data collection methods for the research, and to enrich analysis and understanding from the study’s findings.
Context
People with high functioning autistic characteristics tend to have strong skills in some areas, while being very low functioning in others. Common strengths often include skills and traits that are required for school success, including the ability to focus attention, memorize, master basic academic skills quickly and easily, and follow concrete instructions. It is not uncommon for the educational needs of these learners to be overlooked because they are capable of mastering basic curriculum. Important areas of deficit are generally not addressed in school, as they are not part of any current curriculum and possibly because most neurotypical learners naturally develop these essential skills without specific instruction. Weaknesses relating to perception, abstract thinking, understanding cause and effect, prioritizing, decision-making, and adapting to change are typical in the diagnosis. These are examples of skills that are pertinent to success, but are not identified as focus points in any particular curriculum.
Although existing research allows for speculation about what knowledge, skills and attitudes should be addressed in the successful education of learners with characteristics of high function autism, there seems to be little research examining the big picture of autism.
Key Terms in this Chapter
Wellbeing: The individual and subjective phenomena and lived experiences that people connect with value and happiness in life. Wellbeing is a complex construct that is composed in varying degrees of both hedonistic and eudemonic experiences. Research specific to the wellbeing of people with autism, from a first-person perspective, was underrepresented in the literature review.
Upper Left (UL) Quadrant: Represents the interior individual dimensions of the quadrant. Phenomenology was used as the research methodology relating to this quadrant. Themes connected with this quadrant focused on the thoughts, beliefs, and values of individual participants.
Upper Right (UR) Quadrant: This quadrant examines perspectives representing the exterior individual perspective. It is based in quantitative understandings of the phenomena. UR understanding was collected using referenced questionnaires and scales. Participant themes connected with the UR quadrant included physical aspects of the experience of wellbeing and autism.
Lower Right (LR) Quadrant: The LR quadrant examined elements of the research connected with the exterior collective. The representing methodology, espoused in understanding connected to well-being and social systems, focused on a narrative analysis exploring the issue of wellbeing and high functioning autism in Alberta schools, healthcare, and social support systems.
Integral Methodological Pluralism (IMP): A construct for applying integral theory to research and analysis.
Lower Left (LL) Quadrant: Focuses on dimensions of phenomena relating to the interior collective. Duoethnography was chosen as methodology for this quadrant, with themes from data connecting with participant relationships, community, and personal interactions with others.
High Functioning Autism Characteristics (HFAC): High functioning autism is a neurodevelopmental disorder marked by social impairment, communication difficulties, and restricted, repetitive and stereotyped patterns of behavior in individuals with average to above average IQs. Prior to the implementation of the newest Diagnostic and Statistical Manual of Mental Disorders (DSM-5), it was synonymous with Asperger’s Syndrome. HFAC refers to the qualities and traits most commonly connected with high functioning autism. The starting point for HFAC in this research was based on the categories identified in the UR AQ scales, and then were further developed and described using methodology representing each of the other quadrants.
Psychological Wellbeing Scales (PWBS): An instrument developed for the purpose of obtaining a measurement of theoretically-derived constructs of psychological wellbeing. Domains measured include autonomy, self-acceptance, environmental mastery, personal growth, positive relationships with others, and purpose in life.
Quadrant Framework: The quadrant model included as part of the AQAL framework, which was used as the primary tool in guiding the literature review, developing the research methodology and assisting in data analysis for this research.
Autism Quotient (AQ) Scales: A questionnaire tool developed to measure the degree to which an adult with normal intelligence has autism. Categories of traits measured involve communication, social skills, imagination, attention switching, tolerance of change and attention to detail.
All Quadrant All Lines (AQAL) Framework: A tool to assist with interpretation and understanding of knowledge and phenomena through the lens of integral theory. Specific aspects of the framework include quadrants, levels, stages, waves, states, lines, and types.
Integral Theory: A metatheory that provides a framework towards integrating human knowledge and understanding beyond traditionally compartmented topics, disciplines, and geography. In this chapter, references to integral theory are based on the work and conceptualizations of Ken Wilber.