Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder

Highlights

• Women with ASD experienced greater healthcare communication challenges.

• Women with ASD reported greater anxiety related to healthcare communication.

• Challenges increase under emotional distress, and during pregnancy and childbirth.

• Stigma and disclosure of ASD diagnostic status were reported as highly problematic.

• An on-line pilot study developed questionnaire tools suitable for adults with ASD.

Abstract

Research indicates significant health disparities for individuals with autism. Insight into characteristic sensory, cognitive, communication, social, emotional, and behavioural challenges that may influence health communication for patients with autism is vital to address potential disparities. Women with high functioning autism spectrum disorder (ASD) may have specific healthcare needs, and are likely to independently represent themselves and others in healthcare. A pilot study compared perceptions of healthcare experiences for women with and without ASD using on-line survey based on characteristics of ASD likely to influence healthcare. Fifty-eight adult female participants (32 with ASD diagnosis, 26 without ASD diagnosis) were recruited on-line from autism support organisations. Perceptions measured included self-reporting of pain and symptoms, healthcare seeking behaviours, the influence of emotional distress, sensory and social anxiety, maternity experiences, and the influence of autistic status disclosure. Results partially support the hypothesis that ASD women experience greater healthcare challenges. Women with ASD reported greater challenges in healthcare anxiety, communication under emotional distress, anxiety relating to waiting rooms, support during pregnancy, and communication during childbirth. Self-disclosure of diagnostic status and lack of ASD awareness by healthcare providers rated as highly problematic. Results offer detailed insight into healthcare communication and disparities for women with ASD.

Introduction

Qualitative reports of healthcare experiences for patients with autism spectrum disorder (ASD) (Aylott, 2004, Aylott, 2010) have highlighted critical challenges linked to social, emotional, communication, sensory, and behavioural differences, compared to patients without ASD. Higher mortality and morbidity rates (Bilder et al., 2013, Mouridsen et al., 2008) and poorer health and social outcomes (Balfe and Tantam, 2010, Levy and Perry, 2011) are also indicated for individuals with ASD. Previous reports have emphasised health and healthcare challenges for children and lower functioning adults with ASD (Ahmedani and Hock, 2012, Kuhlthau et al., 2010, Liptak et al., 2006, Minnes and Steiner, 2009); however, limited data is available for healthcare experiences for high functioning adults with ASD (Bruder, Kerins, Mazzarella, Sims, & Stein, 2012).

High functioning adults with ASD are more likely to represent themselves independently across all healthcare settings compared to children and low functioning adults, due to average to above average intelligence and functional language skills (Levy and Perry, 2011, Noterdaeme et al., 2010, Soulières et al., 2011). Perceptions that high functioning adults have less disability-related needs (Nicolaidis et al., 2013) and poor clinician understanding of the characteristics of high functioning ASD in general medicine (Venkat, Jauch, Russell, Crist, & Farrell, 2012) may decrease health practitioner awareness of healthcare challenges for this population. This study addressed the need to understand challenges in healthcare communication for high functioning adults with ASD.

Healthcare communication for adults with ASD is likely to be determined by the interaction of characteristic ASD differences and unique contexts within healthcare. The Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association, 2013) recognises ASD deficits in social–emotional reciprocity, understanding interpersonal relationships and non-verbal communication, and restricted and repetitive patterns of behaviour with hypo–hyper sensory reactivity to the environment, with or without intellectual and language impairments. Unique characteristics of healthcare experiences that may be problematic for patients with ASD include the need for timely and accurate communication, emotional and physical discomfort and distress, unfamiliar conversational partners, and confronting sensory environments.

Healthcare experiences of patients with high functioning ASD are likely to be influenced by deficits in processing emotional stimuli for self and others, expressing emotions verbally, and self-regulating emotions (Bird et al., 2011, Bölte et al., 2008, Laurent and Rubin, 2004, Montgomery et al., 2013, Samson et al., 2012). The extent to which patients with ASD experience compounding emotional challenges due to social, communication, and sensory challenges within healthcare settings is unknown. It is also unclear how their communication in healthcare settings is influenced by perceptions of stigma and discrimination relating to disclosure of diagnostic status of ASD (Butler and Gillis, 2011, Calzada et al., 2012, Heidgerken et al., 2005, Huws and Jones, 2010, Shtayermman, 2007, Shtayermman, 2009, Stevenson et al., 2011).

Relatively high language skills and compensatory communication strategies developed by high functioning adults (Hobson, 2012, Lee and Park, 2007) may mask social anxiety (Freeth et al., 2013, Kuusikko et al., 2008, Samson et al., 2011) and a range of potential communication challenges. Communication challenges may include expressive and receptive speech deficits (Holdnack et al., 2011, Lewis et al., 2008, Noterdaeme et al., 2010), speech sound disorders (Shriberg, Paul, Black, & Santen, 2011), and semantic processing differences (Gold et al., 2010, Hobson, 2012). Non-verbal skill deficits may include processing of facial expressions and prosody (Doi et al., 2013), and speech and gestures (Silverman, Bennetto, Campana, & Tanenhaus, 2010). Further, ASD patients may have impaired ability to understand shared beliefs, knowledge, intentions, and motivations of healthcare communication partners through reduced theory of mind skills (Baron-Cohen et al., 1985, Beaumont and Newcombe, 2006).

Unique sensory experiences in healthcare environments, such as bright lights, chemical odours, and intimate physical contact may be challenging for patients with ASD who experience multisensory differences (Ben-Sasson et al., 2009, Lai et al., 2011, Magnée et al., 2011). The communication of pain and symptoms are important aspects of healthcare, yet the understanding of subjective pain and sensory experiences in ASD also remains contentious (Cascio et al., 2008, Lévesque et al., 2011). The influence of potential sensory challenges on healthcare experiences and behaviours of ASD adults who represent themselves independently in healthcare remains unknown.

Although the interaction of social–emotional, communication, and sensory challenges will depend on individual deficit patterns, any associated healthcare challenges may result in problematic behaviours such as delay in seeking healthcare, and avoidance of general or specific service providers and settings. Repeated non-disclosure of ASD diagnostic status may prevent or delay appropriate communication accommodations by service providers and may influence clinical reasoning given the potential comorbidity of various psychiatric and physiological conditions with ASD (see Bruder et al., 2012, Memari et al., 2012).

Previous quantitative research of high functioning adults with ASD reported significantly lower perceptions of self-efficacy and satisfaction with healthcare provider communication, and disparities in unmet healthcare needs, compared to other adults (Nicolaidis et al., 2013). However, these important findings were based on adaptation of large-scale general population healthcare surveys which may not account for characteristic social, emotional, communication, sensory, and behavioural challenges acknowledged for patients with high functioning ASD (Aylott, 2004, Aylott, 2010).

Some traditional measures may be inappropriate for use with high functioning ASD populations. For example, questionnaire items requiring recall over the past year utilise skills that are potentially atypical for adults with high functioning ASD. An item such as “Healthcare providers gave me the chance to ask all health related questions I had” over 12 months requires adequate cognitive processing of experiences as they happen, plus accurate long-term recall. The perceptions of health communication experiences for high functioning ASD patients may be influenced by differences in auditory working memory, processing speed, and verbal comprehension (Holdnack et al., 2011, Lewis et al., 2008).

This type of evaluation also demands understanding of non-verbal and verbal cues. However, cue processing could be reduced through impaired integration of facial expressions and prosody (Doi et al., 2013), impaired processing of speech and gestures (Silverman et al., 2010), and the influence of theory of mind deficits (Baron-Cohen et al., 1985, Beaumont and Newcombe, 2006). Additionally, being provided the chance to ask any health related questions does not guarantee patients’ appropriate use of such opportunities.

Investigative tools adapted for the needs of high functioning adults with ASD are therefore required.

Previous research supports the exploration of healthcare perceptions for ASD populations by gender (Bölte et al., 2011, Lai et al., 2011, Lemon et al., 2011). Women may be more likely to engage in healthcare due to gynaecological and obstetric needs and through representing other family members, such as children and the elderly. High functioning women with ASD are also less likely to be diagnosed with autism than men (Lai et al., 2011, Wing et al., 2011), attributed partially to greater skills in masking autistic deficits (Kirkovski, Enticott, & Fitzgerald, 2013). The masking of characteristic ASD deficits may complicate communication for high functioning ASD women in healthcare settings, particularly if these patients do not disclose that they have an ASD diagnosis.

This pilot study aimed to address gaps in current literature and provide initial regional data that reflects Australian social, economic, political, and healthcare contexts. It formed the initial stage of development of a questionnaire to compare healthcare experiences of women with and without high functioning ASD based on characteristic differences of autism likely to influence healthcare experiences. It was hypothesised that women with high functioning ASD would report greater healthcare challenges compared to women without ASD in both general and maternity healthcare, and be influenced by perceived stigma.