Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism

Paz, Nikko S. Da; Siegel, Bryna; Coccia, Michael; Epel, Elissa S.

doi:10.1007/s10803-017-3450-4

Cited by 44 publications

(44 citation statements)

References 22 publications

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“…The only autistic participants who described themselves in terms of social-communicative strengths were those whose parents had voluntarily disclosed their diagnosis to them. Previous research has shown that autistic individuals often internalize a need to hide their autistic traits to appear normal (Cage & Troxell-Whitman, 2019 ; Hull et al, 2017), which mirrors parent sentiments surrounding interventions to ameliorate autism symptoms (Da Paz et al, 2018; Myers et al, 2009). Our findings align with research suggesting that learning about one’s diagnosis often helps autistic people understand their differences and reframe limitations into acceptable differences (Humphrey & Lewis, 2008; Mogensen & Mason, 2015; Russell & Norwich, 2012).…”

Section: Discussionmentioning

confidence: 93%

How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

Riccio

Kapp

Jordan

et al. 2020

Autism

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A large body of literature examines parental interpretations of their child’s autism diagnosis. However, research examining intersections between parental disclosure of their child’s autism diagnosis to their child and their child’s identity development is lacking. The primary aim of this study was to analyze if parental decisions to disclose/withhold their child’s autism diagnosis influence adolescents’ perceptions of autism and identity development. Adolescent participants ( n = 19) and their mothers, recruited from an informal educational program, completed in-person interviews and online questionnaires, respectively. Adolescents were told about their autism diagnosis in varying ways. Adolescents whose parents voluntarily disclosed their autism diagnosis to them described autism and themselves more positively than adolescents who did not experience voluntary disclosure. Although parents and teens showed similarities on a group level when defining autism, parents and children expressed diverse themes in their definitions of autism. Findings suggest that parents can help their children develop neurodiversity-aligned perspectives about autism by mindfully discussing autism with them early in their development. Lay abstract There is a lot of research about how parents think about their child’s autism but we don’t know much about how parents talk with their kids about autism. How parents talk with their kids about autism may shape how kids see autism. A team of autistic and non-autistic people (including a mother of an autistic person) did a study. We wanted to know if how parents talk with their kids about autism shapes how their kids see autism. Nineteen teens from a summer camp did interviews and surveys. Their mothers did surveys. Teens learned about if they had autism in different ways. Some teens still didn’t know they were autistic. Teens whose moms chose to tell them about their autism talked about autism and themselves more positively than teens whose moms didn’t choose to talk with them about autism. Only teens whose moms chose to talk with them about autism described themselves as having social strengths. Teens had a harder time defining autism than moms. However, teens and moms talked about autism in similar ways. Our study shows that parents can help their kids see autism and themselves more positively by talking with their kids about autism early in development.

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Section: Discussionmentioning

confidence: 93%

How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

Riccio

Kapp

Jordan

et al. 2020

Autism

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“…Reduced adaptive adjustment—acceptance and increased feelings of blame and despair—critically influence both the psychological (anxiety, depression, etc.) and somatic wellbeing of the parent [ 101 ], impairing the parent’s ability to participate effectively in the child’s management and training. Thus, professional’s training “demands” to parents should be always accompanied by measures aiming at increasing acceptance and ensuring the wellbeing of the parents [ 97 ].…”

Section: Prevention Strategiesmentioning

confidence: 99%

Prevention in Autism Spectrum Disorder: A Lifelong Focused Approach

Francis¹,

Karantanos

Al-Ozairi

et al. 2021

Brain Sciences

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Autism Spectrum Disorder (ASD) is a complex highly heritable disorder, in which multiple environmental factors interact with the genes to increase its risk and lead to variable clinical presentations and outcomes. Furthermore, the inherent fundamental deficits of ASD in social attention and interaction critically diverge children from the typical pathways of learning, “creating” what we perceive as autism syndrome during the first three years of life. Later in life, training and education, the presence and management of comorbidities, as well as social and vocational support throughout the lifespan, will define the quality of life and the adaptation of an individual with ASD. Given the overall burden of ASD, prevention strategies seem like a cost-effective endeavour that we have to explore. In this paper, we take a life course approach to prevention. We will review the possibilities of the management of risk factors from preconception until the perinatal period, that of early intervention in the first three years of life and that of effective training and support from childhood until adulthood.

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“…Less severe ASD symptoms are expected to enhance the ease of embracing acceptance of the diagnosis among caregivers. However, a recent study revealed the opposite results [ 9 ]. The subtler the symptoms, the less attention the parents are likely to pay to the disorder.…”

Section: Introductionmentioning

confidence: 99%

“…According to a recent longitudinal study, the psychological condition of the parents is associated with the social ability of their children with ASD [ 8 ]. Notably, emotional acceptance of ASD could be a protective factor against parenting stress and a depressive mood [ 9 ]. Less severe ASD symptoms are expected to enhance the ease of embracing acceptance of the diagnosis among caregivers.…”

Section: Introductionmentioning

confidence: 99%

“…In addition to developments in early intervention, early diagnostic tools have been developed [ 19 , 20 ]. When their children are diagnosed, some parents experience increased levels of self-blame and despair about the diagnosis, and their mental health worsens [ 9 ]; therefore, subsequent interventions should fully consider the mothers’ emotions regarding the diagnosis of ASD [ 21 ].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Changes in maternal feelings for children with autism spectrum disorder after childbirth: The impact of knowledge about the disorder

et al. 2018

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The social interactions between caregivers and their children play a crucial role in childhood development; therefore, caregivers’ feelings for children are critical for the development of social minds. Mothers of children with autism spectrum disorder (ASD) are known to experience higher levels of stress. However, knowledge regarding mothers’ feelings for their children before receiving a clinical diagnosis is limited. This study retrospectively investigated the time course of mothers’ feelings from the time of birth and the effect of protective factors. The participants were 5- to 8-year-old children with an ASD diagnosis and their mothers. The mothers of the children with ASD had less positive feelings toward their children than the mothers of the typically developed (TD) children before receiving a clinical diagnosis. Intriguingly, prior knowledge of ASD may relieve maternal mental distress during the child-rearing years and at the time of diagnosis.

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Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism

Cited by 44 publications

References 22 publications

How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

How is autistic identity in adolescence influenced by parental disclosure decisions and perceptions of autism?

Prevention in Autism Spectrum Disorder: A Lifelong Focused Approach

Changes in maternal feelings for children with autism spectrum disorder after childbirth: The impact of knowledge about the disorder

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