Notes: Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism
Overview
Study topic: How mothers adjust psychologically after a child is diagnosed with autism spectrum disorder (ASD) and how this adjustment relates to distress and well-being over time.
Design: Longitudinal study with baseline and 18-month follow-up, involving 90 mothers of children with ASD.
Main question: Do different dimensions of adjustment to the ASD diagnosis (adaptive vs. maladaptive) predict trajectories of mental health and life satisfaction?
Key finding: Adaptive adjustment characterized by acceptance is protective against depressive symptoms and perceived stress, whereas increases in self-blame and despair over 18 months are linked to worsening mental health and lower life satisfaction. Despair showed the most consistent association with distress and poor well-being over time.
Key Concepts and Definitions
Adjustment to the Diagnosis of Autism (ADA): A novel 30-item self-report scale assessing caregiver adjustment to parenting a child with ASD. Items use a 4-point Likert scale (1 = Don’t agree at all, 4 = Very strongly agree).
Total ADA score is the average of item responses; higher scores indicate greater adjustment when favorable (acceptance) and distress when maladaptive facets (despair/self-blame) dominate.
ADA reliability: total score α = 0.74 at baseline; α = 0.78 at 18 months.
ADA dimensions (identified by exploratory factor analysis):
Acceptance (adaptive component): positive adaptation and integration of the diagnosis into parenting, may include perceiving greater closeness with partner or belief that dealing with autism will make one a better person.
Self-blame (maladaptive component): cognitions implicating personal fault or responsibility for the child’s ASD.
Despair (maladaptive component): intense worry and rumination about the child’s diagnosis, future, and family impact.
Other measures used to assess distress and well-being:
Childhood Autism Rating Scale (CARS): 15 items; assesses autism severity; higher scores indicate greater symptom severity; reliability baseline α = 0.94.
Caregiving Burden Scale (CGBS): 20 items; assesses stress/burden related to caregiving; α = 0.85 at baseline and 18 months.
Inventory of Depressive Symptoms (IDS): 30 items; measures depressive symptom severity; α = 0.82 at baseline, 0.88 at 18 months.
Parental Stress Scale (PSS): 18 items; assesses parenting-related stress; α = 0.87 at baseline, 0.89 at 18 months.
Perceived Stress Scale (PSS-10): 10 items; general stress perception; α = 0.87 at both time points.
Psychological Well-being (Ryff): two subscales used – Purpose in Life (9 items) and Self-Acceptance (9 items); reliabilities: purpose in life α ≈ 0.78–0.79; self-acceptance α ≈ 0.92–0.91.
Relationship Satisfaction (RSQ): 14 items; measures marital satisfaction; α = 0.92 at both time points.
Satisfaction with Life Scale (SWLS): 5 items; life satisfaction; α = 0.92 at both time points.
Covariates: ASD severity (CARS) included as a covariate in predictive analyses; basis for controlling potential confounding.
Conceptual framework: Adaptive adjustment (acceptance) as a resilience factor; maladaptive components (self-blame and despair) as risk factors for psychological distress and reduced well-being.
Methods
Participants and sampling
Source: Stress, Aging, and Emotions (SAGE) caregiving study.
Groups: Mothers raising a child with ASD (n = 92) and mothers raising a neurotypical child (n = 91). ASD diagnosis via DSM-IV criteria based on parent report; diagnosis verified by parent report only.
Final analyzed sample for ADA scale: 90 mothers (mean age 42.3, SD 5.7).
Demographics (baseline): mostly White (84%), 81.1% with college degree or higher, 81.1% in income brackets ≥ $50,000; age of mothers around early 40s.
Child age range at enrollment: 2–9 years.
Exclusions: major chronic disease, current PT/PTSD/bipolar/eating disorders, other exclusion criteria applied.
Procedures
IRB approval; informed consent.
Assessments conducted at baseline and after 18 months using paper/pencil or REDCap.
Incentive: $75 per assessment.
ADA scale development (factor analysis)
Analytic approach: Exploratory Factor Analysis (EFA) to identify dimensional structure.
Extraction: Principal components analysis with direct oblimin rotation and Kaiser normalization (allowing correlated factors).
Determinants of item retention: Minimum factor loading ≥ 0.30; one item dropped because loading < 0.30; Bartlett’s test of sphericity significant: oxed{ ext{Bartlett's } ext{χ}^2(435)=1417.63, p<0.01}.
Three-factor solution: accounted for about 32.47 ext{ extsuperscript{ ext{a}}} ext{% of the variance}; factor loadings ranged from 0.30 to 0.75; primary loadings per factor summarized in Table 2.
Subscale reliability (at baseline): Acceptance α = 0.40; Self-blame α = 0.70; Despair α = 0.79. ADA total score showed good overall reliability: α = 0.74 (baseline) and α = 0.78 (18 months).
Representative items per factor (from Table 2):
Factor 1: Despair (high loadings like 0.75 on “My child’s autism will always cast a shadow on our family”; 0.71 on “When I think about my child’s difficulties, I ask myself, ‘Why me?’”; 0.64 on “I am surprised how much time I spend thinking, ‘Why did I have a child with autism?’”).
Factor 2: Self-blame (high loadings on “I imagine going back in time and re-doing the things I might have done to have caused my child’s difficulties” and similar items). Loadings around 0.60–0.62 for core self-blame items.
Factor 3: Acceptance (high loadings on “My child’s diagnosis has brought my spouse/partner and me closer together in some ways” and “Dealing with my child’s autism will make me a better person”).
Analyses for associations and predictions
Baseline (cross-sectional) correlations (Table 3):
ASD severity ↔ ADA dimensions: Acceptance r = 0.25, p = .02; Despair r = 0.29, p = .01; Self-blame not significantly related to ASD severity at baseline.
ADA dimensions ↔ psychological distress and well-being:
Acceptance associated with lower depressive symptoms r = −0.34, p < .001 and lower perceived stress r = −0.27, p = .01; not significantly related to well-being scales at baseline.
Self-blame associated with higher caregiving burden (r = 0.25, p = .02) and higher parental stress (r = 0.25, p = .02); inversely related to life satisfaction (r = −0.31, p < .001) and to self-acceptance (r = −0.29, p = .02).
Despair associated with higher distress and lower well-being across indices (significant correlations with multiple measures cited in Table 3).
Longitudinal analyses (predicting change over 18 months)
Baseline ADA predicting change: When baseline ADA was included with change in ADA, baseline ADA generally did not predict change in outcomes; exception: baseline Despair predicted worsening in depression and self-acceptance at follow-up.
ADA change scores predicting outcome changes (Table 4):
Change in Acceptance predicting change in depressive symptoms: β = −0.30, p = .05.
Change in Self-blame predicting change in life satisfaction: β = −0.30, p = .04.
Change in Despair predicting changes in outcomes (significant associations):
Change in caregiving burden: β = 0.39, p < .001.
Change in parental stress: β = 0.47, p < .001.
Change in satisfaction with life: β = −0.42, p < .001.
All models controlled for ASD severity; some models included baseline ADA scores as covariates; results reported in Table 4 show consistent patterns across outcomes.
Post-hoc analysis: Duration of caregiving
Examined whether duration from diagnosis to baseline affected ADA dimensions; results showed no significant associations or predictive ability for any ADA scale.
Results in Context: What the Findings Mean
Three dimensions of caregiver adjustment to ASD diagnosis were identified: Acceptance (adaptive), Self-blame (maladaptive), and Despair (maladaptive).
Acceptance at baseline was associated with better mental health (lower depression and perceived stress) but not with broader well-being measures; over time, increases in acceptance were linked to reductions in depression, suggesting a protective effect on psychological distress but not necessarily on all well-being domains.
Self-blame and despair showed stronger associations with adverse outcomes. Higher self-blame related to greater caregiver burden and parental stress and lower life satisfaction and self-acceptance at baseline; reductions in self-blame over time were linked to increases in life satisfaction.
Despair consistently associated with higher distress and poorer well-being across multiple domains; reductions in despair over time predicted reductions in caregiver burden and parental stress and increases in life satisfaction, indicating a robust link between despair reduction and improved adjustment.
The most notable longitudinal finding is that changes in ADA subscales, particularly reductions in despair, predict favorable shifts in several distress and well-being outcomes.
Counterintuitive baseline finding: greater ASD severity was associated with greater initial acceptance, suggesting complex dynamics where more severe symptoms may push parents toward acceptance as a coping mechanism (possible explanations include stronger acknowledgement of chronicity and consequent shift toward accommodation).
Implications for interventions: targeting negative cognitions (despair, self-blame) and fostering adaptive acceptance may help buffer parental distress and promote resilience. Mindfulness and Acceptance and Commitment Therapy (ACT) approaches, as well as narrative/expressive writing, could be potential mechanisms to increase acceptance and reduce despair.
Measures and Data Details (Key Points)
ADA scale development and scoring
30 items; 4-point Likert scale; total ADA score = mean of items.
Factor structure obtained via direct oblimin rotation: three factors with primary loadings 0.30–0.75; item of low loading removed.
Reliability for ADA scales at baseline:
Acceptance: α = 0.40
Self-blame: α = 0.70
Despair: α = 0.79
Overall ADA scale reliability: baseline α = 0.74; 18-month α = 0.78.
Other scales and purpose
CARS: measure child ASD severity; used as covariate due to its association with parent stress.
CGBS: caregiver burden (stress associated with daily caregiving).
IDS: depressive symptoms.
PSS: parental stress related to parenting.
PSS-10: general perceived stress.
Ryff Purpose in Life and Self-Acceptance: well-being indices.
RSQ: relationship satisfaction.
SWLS: life satisfaction.
Statistical approach (summary)
Factor analysis: to identify dimensions of ADA.
Baseline correlations (cross-sectional): to establish concurrent associations.
Longitudinal regressions with change scores: to test whether changes in ADA dimensions predict changes in distress and well-being, while controlling for ASD severity and baseline ADA where appropriate.
Change scores computed as 18-month value minus baseline value (Δ = value18mo − valuebaseline).
Relation testing used SPSS Version 24; covariates included ASD severity; some models included baseline ADA to assess predictive strength of change scores.
Interpretive Insights and Implications
The data support a dimensional view of parental adjustment to ASD, rather than a single “positive vs negative” dichotomy. Acceptance, as a dynamic process, appears protective against depressive symptoms and perceived stress, while despair and self-blame contribute to maladaptive trajectories.
Interventions aiming to reduce despair and self-blame, and building acceptance, could have meaningful effects on maternal mental health and life satisfaction. Mindfulness-based and acceptance-driven therapies, along with narrative approaches, may be promising avenues to explore for parents of children with ASD.
The observed association between higher ASD severity and greater acceptance at baseline invites further study into coping pathways under severe symptomatology and whether different developmental stages (e.g., younger children vs. emerging adults) alter these dynamics.
Limitations to consider:
Sample demographics skewed toward higher education, White ethnicity, and higher income; results may not generalize to diverse populations.
All measures were self-reported; future work should incorporate objective stress biomarkers or other objective indicators.
Observational design limits causal inferences; randomized trials of intervention strategies targeting ADA dimensions are needed to establish causality.
Fathers and other family members may experience adjustments differently; future work should include fathers and siblings.
Practical implications:
Clinicians and service providers could screen for despair and self-blame in parents of children with ASD and target these areas with tailored interventions.
Programs that cultivate acceptance and meaning-making (e.g., mindfulness-based stress reduction, ACT-oriented parenting interventions, expressive writing) might reduce caregiver distress and promote resilience.
Supports such as respite care and social support groups should be designed to avoid reinforcing non-acceptance or despair, emphasizing adaptive coping strategies and hope.
Notes on Tables and Key Data Points (Referenced in the Text)
Table 2: Factor loadings from the ADA three-factor solution
Factor 1: Despair (e.g., items with loadings up to 0.75, 0.71, 0.64, etc.).
Factor 2: Self-blame (e.g., items with loadings up to 0.62, 0.61, 0.60; several items load around 0.50–0.60).
Factor 3: Acceptance (e.g., items with loadings around 0.60, including items like “My child’s diagnosis has brought my spouse/partner and me closer together in some ways”).
Note: One item dropped due to loading < 0.30; overall cumulative explained variance: 32.47%
Table 3: Baseline correlations between ADA subscales and study outcomes
ASD severity ↔ ADA subscales: Acceptance r = 0.25 (p = .02); Despair r = 0.29 (p = .01); Self-blame non-significant with ASD severity at baseline.
Acceptance ↔ Depression: r = −0.34 (p < .001); Acceptance ↔ Perceived stress: r = −0.27 (p = .01).
Self-blame ↔ Caregiving burden: r = 0.25 (p = .02); Self-blame ↔ Parental stress: r = 0.25 (p = .02); Self-blame ↔ Life satisfaction: r = −0.31 (p < .001);
Self-blame ↔ Self-acceptance: r = −0.29 (p = .02).
Despair ↔ multiple distress/well-being indices (significant associations reported).
Table 4: Regression analyses of change in ADA domains predicting change in outcomes
Depressive symptoms: Change in Acceptance predicting reduction in depression: β = −0.30, p = .05.
Life satisfaction: Change in Self-blame predicting increase in life satisfaction: β = −0.30, p = .04.
Despair changes predicting other outcomes:
Change in caregiving burden: β = 0.39, p < .001.
Change in parental stress: β = 0.47, p < .001.
Change in life satisfaction: β = −0.42, p < .001.
All models controlled for ASD severity; some models also controlled for baseline ADA scores as noted in the study.
Post-hoc analysis results
Duration of caregiving (time from ASD diagnosis to baseline) showed no significant associations with ADA subscale scores or predictive power for changes in outcomes.
Ethical, Practical, and Theoretical Implications
Ethically: The study was IRB-approved; informed consent obtained; emphasizes the importance of supporting caregiver mental health in ASD contexts.
Theoretically: Aligns with Lazarus and Folkman’s stress and coping framework—adjustment involves appraisal and coping strategies that can shift distress and well-being trajectories.
Practically: Supports the development of caregiver interventions focusing on reducing despair and self-blame and promoting acceptance to improve mental health outcomes for mothers of children with ASD.
References (Key Concepts and Related Work)
Foundational ideas on caregiver stress and resilience in chronic illness and disability contexts (e.g., Sheeran et al., 1997; Lord et al., 2008; Lazarus et al., 1980).
Prior ASD caregiver studies on stress, depression, and social support (Davis & Carter, 2008; Barroso et al., 2017; Hayes & Watson, 2013).
Measurement instruments referenced (as per the article): IDS, PSS, PSS-10, Ryff scales, RSQ, SWLS, CARS, CGBS, ADA development by Siegel; standard psychometrics for reliability and validity cited across references.
Intervention implications cited include Mindfulness and Acceptance-based approaches and expressive writing as potential strategies to enhance acceptance and reduce despair (Lovell et al., 2016; Townshend et al., 2016).