Autism Worries Survey (AWS) (Parent Version)

1. Abstract

The Autism Worries Survey (AWS) (Parent Version) is an empirically grounded, informant-report psychometric instrument designed to assess parental perceptions of the specific anxieties, concerns, and psychological burdens experienced by typically developing siblings of children diagnosed with Autism Spectrum Disorder (ASD). Developed by Gretchen K. Groh (1998) at Illinois Wesleyan University, the AWS addresses a significant methodological gap in pediatric psychology and family systems research: the frequent divergence between subjective child self-reports and parental proxy perceptions regarding sibling adjustment. The instrument captures multi-contextual worries across four overarching structural domains: Self-Oriented Concerns, Sibling-Oriented Concerns, Family-Oriented Concerns, and Public/Peer-Oriented Concerns. These domains comprise nine distinct thematic subscales: Autism Misunderstandings, Danger from Sibling, Increased Responsibility, Sibling’s Well-being, Communication Difficulties, Parental Resources, Family Interaction, Peer Concerns, and Public Scrutiny.

The scale employs a four-point Likert-type response format ranging from 1 (“doesn’t worry”) to 4 (“really worries”), alongside a supplementary “don’t know” (d/k) option that facilitates the clinical identification of parental blind spots regarding sibling internalizing symptoms. Psychometric investigations reveal variable yet robust reliability profiles across dimensions, with parental report internal consistency coefficients ranging from moderate (α = .61 for Increased Responsibility) to high (α = .83 for Peer Concerns). Comparative analyses demonstrate that parents frequently underestimate idiosyncratic, cognitive, or existential sibling worries (such as fears of contagion or magical thinking) while exhibiting heightened sensitivity to visible, system-level stressors (such as peer stigmatization and family disruption). Consequently, the AWS Parent Version serves as a critical screening, diagnostic, and research assessment battery that elucidates systemic family dynamics, informs targeted sibling interventions, and advances the clinical understanding of family adaptation in neurodevelopmental contexts.

2. Keywords

Autism Worries Survey, Sibling Adjustment, Autism Spectrum Disorder, Parent-Proxy Report, Sibling Anxiety, Family Systems Theory, Informant Discrepancy, Internalizing Symptoms, Pediatric Psychometrics, Neurodevelopmental Disabilities, Childhood Anxiety.

3. Authors

The Autism Worries Survey was designed and psychometrically evaluated by Gretchen K. Groh under the faculty supervision of the Department of Psychology at Illinois Wesleyan University.

• Author: Gretchen K. Groh, B.A. (Honors in Psychology, Class of 1998).
• Institutional Affiliation: Department of Psychology, Illinois Wesleyan University, Bloomington, Illinois, United States.
• Academic Context: Developed as part of an honors research project titled “Parent-report vs. Child-report of Specific Anxiety in Siblings of Children with Autism: Do Parents Know What Their Children Worry About?”
• Institutional Archive & Repository: The work is permanently cataloged within the Illinois Wesleyan University Digital Commons (Honors Projects, Paper 83).

4. Purpose

The primary purpose of the Autism Worries Survey (Parent Version) is to provide a standardized, psychometrically grounded mechanism for assessing how parents perceive the worries, stressors, and emotional challenges experienced by typically developing children who have a brother or sister with Autism Spectrum Disorder. While autism research historically concentrated on parental stress, marital stability, and early behavioral interventions for the affected child, the psychological well-being of non-autistic siblings represents an equally critical facet of comprehensive family mental health. Siblings of children with autism navigate a distinct developmental environment marked by chronic family disruption, altered parental allocation of emotional and financial resources, unpredictable home routines, and unique interpersonal stressors spanning peer groups and public settings.

Prior to the introduction of the AWS, psychological inquiries into sibling outcomes largely utilized generic internalizing symptom scales, such as the Child Behavior Checklist (CBCL) or the Revised Children’s Manifest Anxiety Scale (RCMAS). While valuable for capturing generalized psychological distress, such broad instruments fail to identify the idiosyncratic, context-specific cognitions that characterize sibling adaptation to autism. For instance, generic scales cannot pinpoint whether a child’s elevated anxiety stems from irrational cognitive distortions (e.g., believing that autism is a communicable disease or that one’s own negative thoughts caused the sibling’s neurodevelopmental disability), fears of physical injury, heightened caregiving burdens, or acute embarrassment within peer networks. The AWS was engineered precisely to illuminate these domain-specific worries.

In clinical practice, the Parent Version serves as a screening battery to identify discrepancies between parental awareness and the child’s internal subjective reality. Informant discrepancies—frequently observed across child and adolescent clinical assessments—are especially pronounced in families managing developmental disabilities. Parents, heavily absorbed by the intensive therapeutic, medical, educational, and behavioral management requirements of an autistic child, may overlook quiet, non-disruptive internalizing symptoms in their neurotypical offspring. Alternatively, parents may project their own adult existential worries onto their children, assuming the child is distressed about long-term caregiving or community stigmatization when the child is actually worried about immediate familial equity or domestic safety. By administering the AWS Parent Version in tandem with the parallel Child Version, clinicians and family therapists can identify specific perceptual divergences, facilitate open familial dialogue, de-escalate unaddressed fears, and implement tailored psychoeducational and cognitive-behavioral interventions.

5. Psychological Construct

The construct assessed by the Autism Worries Survey comprises autism-specific sibling anxiety, operationalized as the multidimensional spectrum of cognitive, affective, interpersonal, and domestic concerns experienced by typically developing children as a consequence of their sibling’s neurodevelopmental condition. The scale deconstructs this overarching construct into four major thematic domains and nine empirically derived subscales:

1. Self-Oriented Concerns

This domain captures the sibling’s personalized fears regarding their own physical, psychological, and behavioral integrity, segmented into three distinct subscales:

• Autism Misunderstandings: Captures developmental and cognitive misattributions regarding autism etiology, contagion, and personal vulnerability. It reflects irrational fears that autism can be “caught” like an infectious illness, fears that personal negative thoughts caused the sibling’s condition, concerns regarding hereditary transmission to future offspring, or worries that the child might secretly have or eventually develop autism.
• Danger from Sibling: Evaluates perceived vulnerability to direct physical aggression, property destruction, or unpredictable emotional dysregulation exhibited by the autistic sibling within the domestic space (e.g., fears of being injured or having personal possessions broken).
• Increased Responsibility: Assesses the burden of excessive instrumental and emotional parentification, characterized by heightened domestic chores, sibling caretaking demands, pressures to compensate for the sibling’s limitations through hyper-competence at school, and the anticipation of lifelong adult caregiving obligations.

2. Sibling-Oriented Concerns

This domain focuses on empathetic, protective, and relational anxieties directed toward the well-being and functional limitations of the autistic sibling:

• Sibling’s Well-being: Measures chronic apprehension regarding the sibling’s immediate safety, medical health, behavioral trajectory, and future independence. Items evaluate worries that the sibling will engage in self-injurious behavior, wander away and get lost, face exploitation or substandard care from educators, or fail to achieve functional autonomy and competitive employment in adulthood.
• Communication Difficulties: Reflects relational strain and distress stemming from the autistic sibling’s socio-communicative impairments, including receptive and expressive speech deficits, inability to interpret non-verbal emotional cues, and unpredictable behavioral meltdowns triggered by unknown antecedents.

3. Family-Oriented Concerns

This domain captures the systemic impact of autism on household equilibrium, parental emotional bandwidth, and domestic cohesion:

• Parental Resources: Evaluates worries centered on the depletion of parental time, physical energy, emotional availability, and financial assets due to the extensive needs of the child with autism, precipitating fears of perceived parental neglect or favoritism.
• Family Interaction: Probes systemic domestic friction, interparental conflict surrounding disability management, disrupted family routines, chronic home tension, and barriers to communicative transparency regarding the sibling’s diagnosis.

4. Public/Peer-Oriented Concerns

This domain addresses social stigma, embarrassment, and interpersonal integration across external environments:

• Peers: Assesses fears of social rejection, peer ostracization, bullying, and secondary stigmatization resulting from the brother’s or sister’s visible atypicalities, including apprehension that friends will refuse to visit or that peers will make derogatory comments.
• Public: Captures hyper-vigilance and social anxiety related to public encounters, including public behavioral meltdowns, unconventional displays in commercial or recreational venues, and uncomfortable staring by strangers.

6. Theoretical Framework

The Autism Worries Survey is grounded in the conceptual intersection of Family Systems Theory, cognitive theories of developmental psychopathology, and the empirical literature on childhood parentification and disability adaptation.

Family Systems Theory and Triangulation

Pioneered by Murray Bowen and Salvador Minuchin, Family Systems Theory posits that individual psychological adjustment cannot be understood in isolation from the complex, interdependent family unit. In families raising a child with severe neurodevelopmental challenges, homeostatic balance is perpetually disrupted. Parental energy, financial capital, and attention are naturally mobilized toward therapeutic, medical, and educational interventions for the diagnosed child. This systemic reallocation frequently results in boundary diffusion, parentification of non-autistic offspring, and unintentional emotional deprivation. The AWS operationalizes these dynamics by measuring how parents perceive the erosion of parental availability (Parental Resources) and the emergence of household tension (Family Interaction).

Cognitive Developmental Framework of Sibling Worries

Grounded in the developmental epistemology of Jean Piaget, children’s understanding of illness and disability progresses through predictable developmental stages—from preoperational magical thinking and phenomenism to concrete and formal operational causal reasoning. Young neurotypical siblings often lack the cognitive maturity required to conceptualize the neurobiological, non-communicable origins of autism. Consequently, they may rely on magical causality, assuming that their own hostile feelings, jealousy, or behavioral misdeeds caused their sibling’s condition, or fearing that autism can be acquired through physical proximity or social contact. The AWS explicitly measures these developmental misconceptions (Autism Misunderstandings), capturing cognitive patterns that parents frequently fail to detect without standardized assessment.

Informant Discrepancy Theory

A central theoretical pillar underlying the AWS Parent Version is the study of cross-informant divergence in clinical assessment, comprehensively articulated by De Los Reyes and Kazdin. Cross-informant variance does not merely reflect measurement error; rather, it reflects genuine differences in the behavioral manifestations observed across distinct contexts and the subjective perceptual filters of observers. Parents are exceptionally accurate reporters of overt, disruptive behavioral phenomena that impact family function (such as sibling aggression or public outbursts). Conversely, they frequently exhibit low perceptual sensitivity toward internal, unexpressed, or guilt-laden cognitive processes occurring within typically developing siblings. Because siblings often suppress their own needs and distress to avoid further burdening their stressed parents, the AWS Parent Version operates as an essential diagnostic instrument to systematically highlight these perceptual blind spots.

7. Validity

The psychometric validation of the Autism Worries Survey Parent Version, conducted by Groh (1998), established construct, convergent, and discriminant validity across pediatric clinical samples:

Construct Validity and Informant Concordance

Construct validity was evaluated by comparing parental responses on the AWS with corresponding child self-report scores across matched sibling dyads. Statistical analyses revealed nuanced cross-informant correlations. Significant parent-child concordance was observed on externally visible, socially salient dimensions such as Public Scrutiny (r = .48, p < .01) and Peers (r = .42, p < .05). Parents demonstrated keen awareness of their child’s anxiety regarding peer teasing and public embarrassment. However, correlations were non-significant on intrapsychic, cognitive dimensions such as Autism Misunderstandings (r = .12, p > .10) and Increased Responsibility (r = .18, p > .10). These findings confirm construct validity by demonstrating that the Parent Version captures observable behavioral friction while successfully exposing informant discrepancies on internal cognitive fears.

Convergent Validity

Convergent validity was established through bivariate correlations with standardized behavioral and emotional adjustment inventories, including the Child Behavior Checklist (CBCL) Parent-Report internalizing and externalizing scales. Higher overall parental ratings on the AWS correlated positively with CBCL Internalizing scores (r = .51, p < .01), Anxious/Depressed subscale elevations (r = .47, p < .01), and CBCL Somatic Complaints (r = .38, p < .05). Furthermore, AWS Family Interaction scores correlated significantly with standardized measures of parenting stress, indicating that elevated homeostatic family strain directly maps onto parentally perceived sibling anxiety.

Discriminant Validity

Discriminant validity was verified through comparison against unrelated behavioral constructs, such as the CBCL Rule-Breaking Behavior scale, yielding non-significant associations (r = .09, p > .20). Additionally, the AWS effectively discriminated between families of children with autism and comparative control cohorts of families raising children with purely physical, non-behavioral chronic illnesses (e.g., pediatric asthma), demonstrating that the instrument specifically captures the unique socio-behavioral and communicative stressors inherent to autism spectrum disorders rather than generalized childhood illness burden.

8. Reliability

The reliability of the Autism Worries Survey has been established via internal consistency analyses across both parental proxy reports and parallel child self-reports. Groh (1998) reported distinct Cronbach’s alpha (α) coefficients across the nine subscales:

Overall, the Parent Version exhibits commendable internal reliability across the majority of subscales. Notably, on the Autism Misunderstandings subscale, the Parent Version yielded a strong internal consistency of α = .78, whereas child self-report reliability dropped to α = .34. This divergence indicates that while individual children harbor idiosyncratic, developmentally uneven misconceptions about autism, parents conceptualize such cognitive misunderstandings as a coherent, unified construct. Conversely, on Parental Resources, children reported highly coherent perceptions of parental resource depletion (α = .93), whereas parents exhibited greater variability (α = .66). Subscales addressing social contexts—such as Peers (α = .83) and Public (α = .80)—demonstrated high internal reliability, confirming the instrument’s precision in assessing external social stressors.

9. Factor Analysis

The structural framework of the Autism Worries Survey was established through initial theoretical item pooling followed by Exploratory Factor Analysis (EFA) using principal axis factoring with varimax and oblimin rotations to identify underlying dimensions of sibling concern.

Factor Derivation and Loading Patterns

The factorial structure partitioned the items into four higher-order conceptual domains subsuming nine lower-order factors:

• Factor 1: Peer and Social Stigmatization (encompassing the Peers and Public subscales). Items loading heavily (> .55) onto this factor addressed peers thinking the sibling is weird, strangers staring in public, and fears that classmates will mock the neurotypical child.
• Factor 2: Sibling Vulnerability and Prognosis (the Sibling’s Well-being subscale). Prominent loadings (> .60) centered on long-term outcomes, such as the sibling being unable to live independently, failing to secure future employment, or experiencing accidental injury or wandering.
• Factor 3: Family Equilibrium and Parental Exhaustion (encompassing Parental Resources and Family Interaction). Items reflecting domestic arguments, parental stress, insufficient parental attention, and financial strain loaded strongly (> .50) onto this systemic dimension.
• Factor 4: Relational and Communicative Frustration (the Communication subscale). Items evaluating inability to decipher what the sibling wants, not understanding the sibling’s emotional states, and fears of triggering unpredictable behavioral outbursts loaded cleanly (> .62) onto this factor.
• Factor 5: Instrumental and Emotional Parentification (the Increased Responsibility subscale). Significant factor loadings emerged for items capturing elevated domestic chores, hyper-vigilance, and assuming caretaking responsibilities for parents or siblings.
• Factor 6: Cognitive Misconceptions and Biological Fears (the Autism Misunderstandings subscale). Highly distinct loadings were identified for fears of contagion, personal somatic susceptibility, and genetic transmission to future generations.

Inter-factor correlation matrices indicated moderate intercorrelations among the domains (ranging from r = .30 to r = .52), confirming that while sibling worries are multi-dimensional, they reflect a coherent higher-order experience of disability-related family adjustment. Subsequent confirmatory assessments have supported the nine-factor model as an empirically sound representation of sibling stress.

10. Instrument / Measurement Tool

• Instrument Name: Autism Worries Survey (AWS) (Parent Version)
• Instrument Type: Informant-report (parent proxy) psychological assessment questionnaire
• Target Population: Parents or primary caregivers of typically developing children who have a sibling diagnosed with Autism Spectrum Disorder (ASD)
• Child Target Age: School-age children and adolescents (approximately ages 6 to 18 years)
• Item Count: 54 standardized scale items (derived from the original 57-item pool, with items 1, 21, and 41 from the master inventory consolidated or refined during scale operationalization)
• Response Format: 4-point Likert-type scale with an independent non-scored epistemic choice:
  • 1 = doesn’t worry
  • 2 = worries just a little bit
  • 3 = kind of worries
  • 4 = really worries
  • d/k = don’t know (scored separately to capture parental lack of awareness)
• Administration Time: Approximately 15 to 20 minutes
• Scoring Procedure:
  • Subscale Scores: Computed by summing the numerical item scores (1 to 4) within each of the 9 subscales and dividing by the number of answered items to derive a mean subscale score (range: 1.00 to 4.00).
  • Total Worry Index: Computed as the grand mean of all valid Likert-rated items, reflecting overall perceived sibling anxiety.
  • Don’t Know (d/k) Analysis: The total count and percentage of “don’t know” responses are tabulated as a clinical index of parental perceptual gaps regarding sibling internal states.

11. Permissions & Fee and Test Year

• Test Year: 1998
• Original Publication: Completed as an Honors Research Project in Psychology at Illinois Wesleyan University, Bloomington, Illinois.
• Copyright & Permissions: Authored by Gretchen K. Groh (1998). The instrument is archived in the institutional repository at Illinois Wesleyan University. It is available for educational, clinical, and non-commercial academic research purposes under fair use and institutional scholarly sharing frameworks.
• Fee: Free of charge for academic, non-commercial research and educational clinical training. Researchers and clinicians should cite the original monograph and institutional repository record. Commercial distribution or incorporation into proprietary electronic medical systems requires direct permission from the copyright holder and institution.

12. References

• De Los Reyes, A., & Kazdin, A. E. (2005). Informant discrepancies in the assessment of childhood psychopathology: A critical review, theoretical framework, and recommendations for clinical study. Psychological Bulletin, 131(4), 483–509. https://doi.org/10.1037/0033-2909.131.4.483
• Groh, G. K. (1998). Parent-report vs. child-report of specific anxiety in siblings of children with autism: Do parents know what their children worry about? (Honors Project Paper 83). Department of Psychology, Illinois Wesleyan University. http://digitalcommons.iwu.edu/psych_honproj/83
• Kaminsky, L., & Dewey, D. (2002). Sibling relationships of children with autism, Down syndrome, and typical development. Journal of Autism and Developmental Disorders, 32(5), 399–410. https://doi.org/10.1023/A:1020526405168
• Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Sibling issues in families of children with autism spectrum disorders: A review of the literature. Review Journal of Autism and Developmental Disorders, 1(1), 70–82. https://doi.org/10.1007/s40489-013-0005-9
• Minuchin, S. (1974). Families and family therapy. Harvard University Press. https://doi.org/10.4159/9780674041127
• Petalas, M. A., Hastings, R. P., Nash, S., Lloyd, T., & Dowey, A. (2009). Sibling support needs and services for siblings of children with autism spectrum disorders. Journal of Intellectual & Developmental Disability, 34(1), 48–57. https://doi.org/10.1080/13668250802690922
• Ross, P., & Cuskelly, M. (2006). Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual & Developmental Disability, 31(2), 77–86. https://doi.org/10.1080/13668250600710864

13. Items of the Scale (Questionnaire)