“We will never be normal”: The Experience of Discovering a Partner Has Autism Spectrum Disorder

Abstract

Online forums and lay literature suggest that partners of individuals with Autism Spectrum Disorder (ASD) experience depression, distress, and trauma in their everyday lives, exacerbated during the time surrounding diagnosis. In this content analysis, 29 participants were provided with an online open-ended statement asking them to describe in writing their experiences of discovering that their partners had ASD during their relationships. Six themes emerged, including: facing unique challenges within relationships; insisting partners seek diagnosis; initial shock and relief; losing hope for normalcy; making accommodations within relationships; and wishing for professional support. Marriage and family therapists should help couples minimize blaming and promote self-awareness, appropriate relationship expectations, and mutual understanding. Future research should explore the overall experience of neuro-mixed relationships for both partners.

Diagnosis of autism in adulthood: A scoping review

“…Adults’ initial concerns that prompted assessment were most likely to be challenges with social interactions and/or mental health (Geurts & Jansen, 2012; Jones et al, 2014). Qualitative studies involved adults who sought an assessment due to existing concerns (Crane et al, 2018), and those were prompted by their parents (Raymond-Barker et al, 2018) or partners (Lewis, 2017b). A US-based international survey of mostly female formally diagnosed and self-diagnosed adults revealed fear of not being believed by health professionals (reported by 94.4%) and difficulty finding an adult autism specialist (reported by 85.6%) deterred adults from professional assessment (Lewis, 2017a).…”

“…Lack of clear pathways to formal support after diagnosis was well-documented from the perspectives of autistic adults, families and service providers (e.g. Crane et al, 2018; Griffith et al, 2012; Lewis, 2017b; Raymond-Barker et al, 2018). A UK survey found that autistic adults’ preferred forms of support were counselling (44.5%), social skills training (36.7%) and support groups (35.9%) (Jones et al, 2014).…”

“…A total of 17 mostly qualitative studies described the experience of receiving an autism diagnosis in adulthood and explored the emotional impact and meanings ascribed to diagnosis. Research conducted in the United Kingdom dominates this topic area (see Bargiela et al, 2016;Hickey et al, 2018;Raymond-Barker et al, 2018), though a US-based project collected online survey data from autistic adults and their partners around the world (Lewis, 2016a(Lewis, , 2016b(Lewis, , 2017a(Lewis, , 2017b. Most studies (n = 15) focused on the first-person experiences of adults while two focused on mothers (Raymond-Barker et al, 2018) and partners (Lewis, 2017b), respectively.…”

“…Over 50% of adults in a UK survey had expected the diagnosis (Jones et al, 2014), but others described it as a surprise (Crane et al, 2018). Adults generally expressed relief and happiness that their concerns were validated (Jones et al, 2014;Lewis, 2016bLewis, , 2017bPunshon et al, 2009), but also described negative reactions such as shock, anger or confusion (Bargiela et al, 2016;Jones et al, 2014;Lewis, 2016b;Powell & Acker, 2016). Autistic adults expressed that the diagnosis gave them a new framework to interpret their experiences (e.g.…”

“…Mothers involved in their adult children's diagnosis expressed positive reactions to the diagnosis (Raymond-Barker et al, 2018), but autistic adults described both positive and negative reactions from their parents (Crane et al, 2018;Punshon et al, 2009). In a survey of mostly female married partners of late-diagnosed adults, the partners reported initial reactions of anger and hopelessness when learning the diagnosis, before accepting and supporting their autistic partner (Lewis, 2017b). Adults expressed that even when families were accepting, misconceptions about autism made support difficult (Crane et al, 2018;Punshon et al, 2009).…”