Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis

Abstract

BackgroundThere have been numerous calls for an increase in autism research that explores the lifespan experiences of autistic people. Notable research neglect exists in the area of autistic adults' experiences of being a parent. This study aims to explore the experiences of autistic adults as parents and to investigate meaningful ways in which to support them. MethodsNine autistic parents took part in remote semi-structured interviews. The interviews utilised different modalities -as chosen by participants -to ensure maximum accessibility. Data analysis was carried out using Iterative Phenomenological Analysis (IPA) principles. ResultsWe identified three superordinate themes: Identity and Purpose; Looking Through a Lens of Trauma; Protect, Defend, Advocate, Repeat. Our participants expressed intimate connections with their children, who were sources of love and joy. Participants' childhood trauma influenced their experiences of being a parent. This was born out in extreme empathy, perfectionism, and a drive to protect their children from experiencing the same things. Participants were continuously advocating and fighting for the right support for their children, and interactions with professionals were a significant source of stress. ConclusionsThis study draws attention to the influence of childhood trauma on the parenting experience of autistic adults. It thereby reveals an unexplored long-term consequence of the traumatising effect of lack of support and othering of autistic children. Professionals interacting with autistic parents and families should be aware that they may be parenting through a lens of historical trauma and should be adequately trained in trauma-informed approaches to support. Further research is needed to investigate this phenomenon and how this knowledge can be used to inform practice. Equally important is investigation and training on the broader systemic and societal issues that impact the parenting experiences of autistic adults.

Academic Coverage of Social Stressors Experienced by Disabled People: A Scoping Review

“…As to the 52 relevant ones, the following phrases were used to cover ADHD or autism: women with autistic traits [155]; autistic adolescence [156]; autistic student [157]; ADHD student [158]; adults who present ADHD symptoms [159]; autistic young adults [160]; children with autistic disorder [161]; children with autism spectrum disorder [162]; younger, middle, and older autistic adults [163], individual who has ADHD [164]; clients with autism [165]; children or youth with autism spectrum disorder [166][167][168]; children with autism [169]; children with autism and other developmental disabilities [170]; persons with autism and other developmental disabilities [171]; people with autism spectrum disorder [172]; youth autism spectrum disorder [173]; intellectually able adults with autism spectrum disorder [174,175]; and children with severe autism and related developmental disabilities [176]. Neurodiverse was not mentioned once as a term.…”

“…As to the origin of the stressor, the disability being the stressor was flagged in 14 abstracts [159,161,164,166,170,174,177,187,193,195,199,203,205,206], the social environment being the stressor in 17 abstracts [4,155,156,163,164,[178][179][180][181][182]186,188,189,192,[196][197][198], and the environment and the disability as stressors in four [168,172,190,191]. In 14 abstracts, it is not clear whether the stress was seen to be caused by the disability or the social environment or both [157,158,160,162,164,165,167,169,173,175,183,185,…”

“…In some abstracts, it is not clear whether the stress is seen to be caused by the disability or the environment's reaction toward it or both [157,158,160,162,165,167,169,173,183,185,200,201] such as "chronic stress associated with disability status" [201] (p. 343). One study talked about stress for autistic parents, whereby the wording suggests that the "autistic traits" were seen as one origin of stressor, but it also suggests that not accepting them as parents might be a stressor [175].…”

“…Four studies flagged the social environment and the 'disability' as stressors [168,172,190,191]. In 14 abstracts, it is not clear whether the disability or the social environment or both were seen as the origin of the stressor [157,158,160,162,164,165,167,169,173,175,183,185,200,201].…”

“Until I Had My Son, I Did Not Realise That These Characteristics Could Be Due to Autism”: Motherhood and Family Experiences of Spanish Autistic Mothers

“…8 Often, this tends to coincide (in time) with having a child on the spectrum, which can help mothers feel a special and intense connection with their children and understand them and themselves better. 5,9 In fact, many mothers consider that such a relationship comes about by openly talking about being autistic with their children. 10 Nevertheless, Talcer et al, noted that some mothers experienced a delay in developing an emotional connection with their infant compared with other neurotypical mothers, being less likely to find motherhood a rewarding experience.…”