Allies and Adversaries: The Experience of Healthcare and Healthcare Relationships for Adults with ‘High-Functioning’ Autism Spectrum Disorder

Background: ‘High-Functioning’ forms of Autism Spectrum Disorder (HFASD) are characterized by a lack of what has been called ‘social competence,’ in the context of on-track language development and intact cognitive abilities. The hallmark social difficulties of HFASD often impact interpersonal relationships, and many individuals with HFASD report feeling dismissed and fundamentally misunderstood as persons. Within healthcare, the Patient-Centred Care (PCC) framework – which promotes understanding the patient as a person and developing positive healthcare relationships - has received much attention in the literature and is widely accepted as beneficial to patients. Despite this focus, little is known about how adults with HFASD experience their healthcare or healthcare relationships. Many physicians report feeling ill-equipped to treat and interact with adult patients with HFASD, yet healthcare research has rarely consulted adults with HFASD, missing the opportunity to understand the unique perspectives of adults with HFASD to inform practice. Given that being understood and having positive relationships is known to contribute to better healthcare experiences and health outcomes, it is essential that we understand what adults with HFASD value and want in their healthcare and healthcare relationships to improve practice.

Objectives: The purpose of this study was to better understand how adults with HFASD experience their healthcare and healthcare relationships by asking them about their experiences directly and exclusively. More specifically, this study aimed to understand perceived strengths and challenges experienced by adults with HFASD, and identify both positive and negative aspects of healthcare and healthcare relationships from their unique perspective.

Methods: Twenty-eight North-American adults with HFASD who could navigate healthcare independently answered four online long-answer open-response questions about their experiences of their healthcare and healthcare providers. Responses were analysed using constant comparison analysis within the Grounded Theory framework. Participants were provided with preliminary findings and given the opportunity to comment, agree or disagree, or clarify their responses to ensure that the researcher had accurately captured their intended meaning.

Results: Participants identified several strengths (e.g., written communication and high intelligence) and challenges (e.g. in-person communication and feeling condescended towards) in navigating their healthcare. Overall, participants reported that their experiences in healthcare were determined by their healthcare relationships, irrespective of their own personal strengths and challenges. Positive experiences occurred with healthcare providers described as ‘allies’ who were caring, knowledgeable and empowering. At times, these ‘allies’ were perceived as lacking knowledge about HFASD, but still fostered an overall positive relationship and healthcare experience by conveying care and understanding of the patient. Negative experiences – which were more commonly reported - occurred with healthcare providers described as unknowledgeable and overpowering ‘adversaries’, and who dismissed patient’s strengths.

Conclusions: For these adults with HFASD, positive and negative experiences of healthcare were largely determined by their experience of their healthcare relationships. Furthermore, healthcare providers who were perceived as knowledgeable and caring were described as forming positive healthcare relationships. This highlights the importance of increased awareness about HFASD - in terms of understanding both the disorder itself and the person with it - among healthcare providers.