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The academic literature describes well the challenges of living with autism spectrum disorder (ASD), parenting a person with ASD, and providing ASD treatment. However, few studies have explored the concept of living a full life with ASD. As part of a larger project on methods of capturing stakeholder priorities, we hosted focus groups with ASD stakeholders to hear their perspectives on treatment and research. These perspectives could inform the ongoing debate over priorities for future research on ASD treatment.
Methods
We held two semi-structured focus groups with each of three stakeholder groups: adults with ASD, parents and advocates, and service providers and researchers. At each group’s first meeting, we described the study objectives, asked what knowledge gaps the participants thought should be addressed, and asked what participants valued in future ASD treatment. At each group’s second meeting, we obtained feedback on our interpretation of stakeholder priorities.
Each author read all focus group transcripts. We coded the transcripts based on themes emerging from the stakeholder discussions. Initially two authors coded each transcript, and ultimately each author specialized in analyzing two transcripts from the same stakeholder group. To reach consensus on coding and interpretation, we held several discussions and reviewed each other’s work.
Results
As stakeholders discussed their research priorities, they described their life experiences. The desire to live a full life with ASD, or to support another person in doing so, emerged as an overarching theme. The adults focused on the meaning of a full life, on challenges such as bullying and stigma, and on the importance of self-actualization. They emphasized a desire to be treated “as human beings and not as a diagnosis.” The parents discussed how they managed ASD and dealt with symptoms, maturation, and stigma. They emphasized maximizing a child’s development over the long term: “There is so much growth with our kids… they’re lifelong learners… the outcome is not in stone.” The professionals focused on the need for better information and tools to help them inform families’ treatment choices. They expressed a need for customized treatment and for more information about intervention effectiveness, how parents select interventions, and outcome measurement—especially intervention effectiveness. For example, one professional commented, “I would like to see… qualitative, in-depth case studies of people… exposed to different types of environment, whether it’s more or less inclusive… we never really follow over a long period of time.”
Implications
From different vantage points, the three stakeholder groups described compatible approaches to ASD treatment and research. As an important step in articulating priorities for future research, all three groups discussed the idea of living a full life with ASD or supporting another person in doing so. All three groups described the complexity of ASD and ASD treatment decisions. The findings highlight the need to pursue a disciplined, long-term, customized, and person-first approach to ASD treatment. Also, dialogue within and among these stakeholder groups may prove useful not only in improving understanding of ASD and its treatment but also in setting priorities for future research.