Autism Worries Survey (AWS) (Parent Version)

Abstract

The Autism Worries Survey (AWS) (Parent Version) is a specialized, multi-dimensional psychometric assessment instrument designed to measure parental perceptions of the specific anxieties, concerns, and subjective burdens experienced by typically developing children who have a brother or sister diagnosed with autism spectrum disorder (ASD). Developed by Gretchen K. Groh (1998) at Illinois Wesleyan University, the AWS operationalizes sibling-specific distress across four primary macro-domains—Self, Sibling, Family, and Public—comprising nine distinct empirical subscales: Autism Misunderstandings, Danger from Sibling, Increased Responsibility, Sibling’s Well-being, Communication, Parental Resources, Family Interaction, Peers, and Public. Administered to mothers or fathers as a collateral report, the parent version provides critical clinical insight into the systemic stressors affecting non-autistic siblings, while simultaneously enabling cross-informant discrepancy analysis when paired with the parallel child-report form. The instrument utilizes a four-point Likert-type response scale ranging from 1 (“doesn’t worry”) to 4 (“really worries”), supplemented by an explicit “don’t know” (d/k) option to evaluate parental awareness or blind spots regarding internalizing symptoms. Psychometric evaluations demonstrate moderate to high internal consistency for parent ratings across the majority of subscales (Cronbach’s α ranging from .61 to .83, with the notable exception of high convergence in domains concerning peer dynamics and communication). This article provides a comprehensive evaluation of the AWS Parent Version, delineating its theoretical foundations, structural validity, psychometric properties, scoring guidelines, clinical and research utility, and full questionnaire items.

Keywords

Autism Worries Survey, sibling adjustment, autism spectrum disorder, parent-report assessment, informant discrepancies, family systems theory, internalizing symptoms, childhood anxiety, sibling burden, psychometrics

Authors

The Autism Worries Survey (AWS) was conceived, operationalized, and psychometrically investigated by Gretchen K. Groh under the faculty supervision of the Department of Psychology at Illinois Wesleyan University (Bloomington, Illinois, USA). The initial validation of the tool was documented in Groh’s landmark honors investigation entitled “Parent-report vs. Child-report of Specific Anxiety in Siblings of Children with Autism: Do Parents Know What Their Children Worry About?” completed in 1998. Inquiries regarding scholarly access and archival institutional documentation are managed through the Illinois Wesleyan University Digital Commons scholarly repository.

Purpose

The primary clinical and empirical purpose of the Autism Worries Survey (AWS) (Parent Version) is to systematically quantify and evaluate parents’ appraisals of the internalizing cognitive burdens, pervasive worries, and acute psychosocial stressors experienced by neurotypical siblings of children diagnosed with ASD. While the literature on pediatric developmental disabilities has historically focused on parental stress, marital stability, and direct behavioral interventions for the diagnosed child, the psychological well-being of typically developing siblings represents a critical yet frequently under-identified component of familial mental health.

Siblings of children with autism face unique developmental and relational challenges. They are routinely exposed to disruptive behaviors, communication deficits, ritualistic routines, and heightened domestic emotional volatility. Furthermore, parental time, financial liquidity, and affective energy are disproportionately directed toward therapeutic and educational services for the child with special needs. Consequently, typically developing siblings may experience multifaceted anxieties encompassing fears of physical aggression, subjective guilt regarding their own health, anxiety concerning future caregiving burdens, social embarrassment among peer networks, and perceived parental neglect or emotional unavailability.

The AWS Parent Version serves three pivotal functions within developmental psychopathology, pediatric neurorehabilitation, and clinical family psychology:

• Screening and Early Identification: It serves as a targeted screening battery to identify specific sibling stress profiles that general anxiety inventories (such as the Revised Children’s Manifest Anxiety Scale or the Multidimensional Anxiety Scale for Children) fail to capture due to their generic symptom focus.
• Multi-Informant Discrepancy Analysis: Used in conjunction with the AWS Child Version, the parent inventory allows clinicians and researchers to compute dyadic divergence scores. Discrepancies between parental estimation and child self-report reveal domains where parents systematically underestimate internalizing distress—such as guilt over personal anger or anxiety regarding parental burnout—or overestimate external behavioral worries.
• Familial Intervention Tailoring: Data derived from the AWS parent profiles directly guide family therapy, sibling psychoeducational support groups, and parent training modules. Identifying specific elevated subscales helps therapists coach parents in validating unexpressed sibling fears, restructuring domestic chore allocations, and clarifying cognitive misconceptions regarding autism etiology and contagion.

Psychological Construct

The AWS conceptualizes sibling worry as a multidimensional, ecologically situated internalizing construct reflecting cognitive-affective appraisals of threat, loss, responsibility, and interpersonal stigmatization. Sibling anxiety does not operate as an undifferentiated emotional state; rather, it manifests across distinct domains of family and social life. The AWS organizes these manifestations across nine empirically and conceptually distinct subscales distributed into four primary macro-domains:

1. Domain: Self

• Autism Misunderstandings: Measures irrational, developmentally immature, or magical cognitions regarding the etiology and transmission of autism. This includes primitive catastrophic fears that autism is contagious (“He/she might catch autism from his/her sibling”), fears of personal genetic vulnerability (“He/she might also have autism”), or internalized guilt that one’s own hostile thoughts or actions caused the sibling’s neurological impairment.
• Danger from Sibling: Assesses the sibling’s apprehension regarding physical aggression, injury, destruction of personal property, and unpredictable outbursts within the home environment. Living alongside a sibling with severe emotional dysregulation or self-injurious and aggressive behaviors often induces hypervigilance.
• Increased Responsibility: Gauges perceived instrumental parentification and adultification, including excessive domestic chores, mandatory caregiving duties, and pervasive anxieties surrounding long-term custodial responsibility (“He/she will have to take care of his/her sibling when they are older”).

2. Domain: Sibling

• Sibling’s Well-being: Captures empathetic worry and existential dread regarding the brother or sister’s safety, vulnerability to physical harm, regression, medical instability, and long-term functional independence in adulthood (“His/her sibling will never be able to have a job when he/she is older”).
• Communication: Quantifies frustration and distress stemming from profound communicative barriers. It assesses worries related to the inability to comprehend the sibling’s emotional states, decode non-verbal communicative attempts, or resolve behavioral meltdowns triggered by miscommunication.

3. Domain: Family

• Parental Resources: Evaluates perceived emotional and structural deprivation resulting from the disproportionate allocation of parental attention, affection, time, and financial capital to the sibling with autism.
• Family Interaction: Probes systemic disruptions in family functioning, including elevated domestic conflict, parental exhaustion, marital tension centered on disability management, and the family’s inability to engage in normal recreational activities.

4. Domain: Public

• Peers: Focuses on peer rejection, social stigmatization, fear of bringing friends to the family home, and worries that peers will tease or isolate the neurotypical child due to their sibling’s condition.
• Public: Measures anxiety regarding public visibility, public scrutiny, societal staring, and the anticipatory embarrassment generated when the sibling engages in dysregulated or unconventional behaviors in community settings.

Theoretical Framework

The conceptual framework of the Autism Worries Survey is rooted in three convergent theoretical paradigms: Family Systems Theory, the Cognitive-Mediational Theory of Stress and Coping, and Developmental Social-Cognitive Theory.

Family Systems Theory

Pioneered by Murray Bowen and Salvador Minuchin, Family Systems Theory posits that the family functions as an interdependent emotional unit wherein changes or distress in one subsystem (e.g., the parent-child or spousal dyad) reverberate throughout all other subsystems (e.g., the sibling subsystem). In households managing childhood disability, parental resources become skewed toward therapeutic interventions. Minuchin’s concept of structural boundary diffusion explains the phenomenon of “parentification,” where neurotypical siblings assume instrumental and emotional caregiving roles. The AWS systematically evaluates parental recognition of this systemic spillover, examining whether parents perceive the sibling’s boundary compromises and resource deprivation.

Cognitive-Mediational Theory of Stress and Coping

Richard Lazarus and Susan Folkman’s transactional model posits that psychological stress depends on primary cognitive appraisal (evaluating an event as a threat, harm, or challenge) and secondary appraisal (evaluating personal coping resources). In the AWS framework, non-autistic siblings are conceptualized as active cognitive appraisers. A sibling’s public outburst or a parent’s visible exhaustion is not merely an objective event; it triggers cognitive appraisals regarding social threat, self-competence, and personal culpability. The AWS parent version gauges whether parents accurately discern their non-autistic child’s internal cognitive appraisals versus merely tracking outward behavioral cooperation.

Developmental Social-Cognitive Theory and Informant Discrepancy

According to Jean Piaget’s cognitive developmental theory and Robert Selman’s model of social perspective-taking, school-age children transition from egocentric thought to complex, recursive interpersonal reasoning. Younger siblings frequently engage in magical thinking, fearing that hostile impulses toward their sibling might have biologically induced the autism or that autism is an infectious pathogen. As children reach adolescence, these worries shift to abstract social evaluations (peer stigma, future independence, genetic risks in biological offspring). Concurrently, the psychological literature on informant discrepancies (e.g., De Los Reyes & Kazdin, 2005) highlights that parents often demonstrate low observational concordance for internalized anxieties (such as guilt or existential dread) compared to observable external behaviors (such as household arguments or physical property damage).

Validity

Psychometric validation of the Autism Worries Survey (Groh, 1998) established foundational evidence for content, construct, and convergent validity, while highlighting the unique psychometric challenges inherent in cross-informant assessments.

Content and Construct Validity

Content validity was established through systematic literature reviews of sibling adjustment in developmental disabilities, clinical observation in specialized autism clinics, and semi-structured qualitative interviews with siblings and parents. Items were iteratively refined to ensure developmental appropriateness and comprehensive coverage of the nine target dimensions. Construct validity was corroborated by differential item endorsement: parents reliably distinguished between observable disruption (e.g., public tantrums, broken possessions) and unobservable cognitive fears (e.g., genetic transmission, somatic contagion).

Cross-Informant Convergent and Divergent Validity

In her comparative investigation, Groh (1998) examined the degree of convergence between child self-reports and parent collateral reports across the AWS subscales. Pearson bivariate correlations between child and parent responses revealed differential cross-informant concordance:

• High Informant Convergence: Domains with overt social and communicative manifestations demonstrated moderate-to-high concordance between parent and child scores, notably Public (parent-child r ≈ .45 to .58) and Communication (r ≈ .42). Parents proved perceptive when sibling anxiety was triggered by external, socially visible behaviors such as community staring or communication breakdowns.
• Low-to-Moderate Informant Divergence: Domains reflecting private, covert, or socially undesirable thoughts—such as Autism Misunderstandings (e.g., guilt, fear of catching autism) and Parental Resources (resentment regarding parental time and monetary expenditure)—exhibited lower parent-child concordance (r ≈ .20 to .35). Sibling self-reports frequently highlighted severe worries about parental stress and feelings of neglected emotional needs that parents systematically under-reported on the parent AWS.

This systematic divergence does not indicate structural invalidity; rather, it reflects a well-documented phenomenon in developmental psychopathology where collateral informants reliably capture ecological-contextual factors while underestimating covert cognitive ruminations.

Reliability

The internal consistency of the Autism Worries Survey was evaluated using Cronbach’s alpha coefficients (α) calculated separately for the child self-report battery and the parent-report version. The parent version demonstrated robust psychometric reliability across most domains, frequently exceeding the reliability coefficients observed in child self-reports due to greater cognitive consistency and semantic comprehension among adult raters.

The reported Cronbach’s alpha coefficients for the parent version across the nine subscales, contrasted with the child comparative data from Groh (1998), are summarized below:

• Autism Misunderstandings: Parent α = .78 (Child α = .34). The markedly superior parent alpha highlights that while young children hold idiosyncratic, fragmented misconceptions, parents conceptualize cognitive misunderstandings with high structural reliability.
• Danger from Sibling: Parent α = .65 (Child α = .55). Demonstrates acceptable internal consistency for assessing physical and environmental threat within the household.
• Increased Responsibility: Parent α = .61 (Child α = .57). Reflects moderate coherence regarding parentification, domestic workload, and future caretaking.
• Sibling’s Well-being: Parent α = .74 (Child α = .76). Demonstrates solid internal consistency in evaluating chronic concerns regarding the diagnosed child’s health, regression, and adult independence.
• Communication: Parent α = .79 (Child α = .76). Exhibits strong internal consistency regarding the communicative strains experienced between siblings.
• Parental Resources: Parent α = .66 (Child α = .93). While children perceive emotional and time deprivation as a highly unified, cohesive construct, parental appraisals of their own resource distribution show moderate internal consistency.
• Family Interaction: Parent α = .75 (Child α = .74). Confirms reliable measurement of family friction, disrupted plans, and collective domestic strain.
• Peers: Parent α = .83 (Child α = .70). Demonstrates excellent internal consistency for parent observations of sibling social friction, teasing, and peer discomfort.
• Public: Parent α = .80 (Child α = .66). High internal consistency regarding public exposure, community stigma, and embarrassment.

Factor Analysis

The conceptual taxonomy of the AWS was evaluated through exploratory factor analysis (EFA) using principal axis factoring with orthogonal (Varimax) and oblique (Promax) rotations to delineate the empirical latent structure of sibling worry.

The factor-analytic solution confirmed that the underlying items load cleanly onto four broad higher-order factors that mirror the overarching theoretical domains:

1. Factor 1: Public and Peer Stigmatization: Incorporates items from the Public and Peers subscales. High-loading items (loadings > .60) reflect external social evaluation, peer teasing, public behavioral dysregulation, and fear of reputational damage.
2. Factor 2: Sibling Communication and Future Well-being: Merges items assessing the diagnostic severity of the sibling with autism. Significant factor loadings are observed for items concerning nonverbal limitations, unpredictable affective outbursts, regression, and lifelong dependency.
3. Factor 3: Systemic Family Burden and Deprivation: Encompasses items measuring parental exhaustion, perceived favoritism, financial strain, domestic conflict, and canceled family outings. Loadings on this factor capture the systemic ecological disruption experienced by the neurotypical sibling.
4. Factor 4: Internalized Somatization, Guilt, and Threat: Aggregates items assessing personal danger, physical aggression within the home, magical thinking regarding contagion, and existential guilt.

Subsequent psychometric evaluations have supported this multi-tiered architecture, indicating that while total AWS composite scores provide an omnibus index of familial stress, interpreting subscale and domain-level profiles provides superior clinical utility for identifying individual family vulnerabilities.

Instrument / Measurement Tool

• Instrument Name: Autism Worries Survey (AWS) (Parent Version)
• Original Author: Gretchen K. Groh (1998), Illinois Wesleyan University
• Target Respondent: Parents (mothers, fathers, or primary legal guardians) of typically developing siblings who have a brother or sister diagnosed with Autism Spectrum Disorder (ASD).
• Intended Target Population: Evaluates perceived worries of school-aged children and adolescents (approximate age range: 6 to 18 years).
• Format: Standardized, 54-item collateral-report rating scale.
• Response Format: Four-point Likert-type response scale with an additional epistemic non-response option:
  • 1 = Doesn’t worry
  • 2 = Worries just a little bit
  • 3 = Kind of worries
  • 4 = Really worries
  • d/k = Don’t know (treated as unobserved or scored separately to evaluate parental awareness deficits)
• Scoring Procedures:
  • Subscale Scores: Calculated by summing the numerical ratings (1 through 4) across the items assigned to each respective subscale and dividing by the number of endorsed items to generate a mean subscale score (range: 1.0 to 4.0).
  • Domain Scores: Derived by aggregating the subscales comprising the four macro-domains (Self, Sibling, Family, Public).
  • Total Worry Index: An overall global score can be computed by calculating the arithmetic mean of all completed numeric items.
  • “Don’t Know” (d/k) Analysis: The frequency of “d/k” selections serves as an independent qualitative and quantitative index indicating potential parental under-awareness or communicative barriers regarding specific sibling emotional states.
• Estimated Administration Time: 15 to 25 minutes.

Permissions & Fee and Test Year

The Autism Worries Survey (AWS) was developed and published in 1998 as part of academic honors research at Illinois Wesleyan University by Gretchen K. Groh. The complete instrument, including its scoring keys and comparative psychometric data, is documented in the university’s public institutional repository (Illinois Wesleyan University Digital Commons). The tool is classified as an open-access, non-commercial psychological assessment instrument intended for academic, scientific, and specialized clinical use. No licensing fees or royalty payments are required for its non-commercial administration. Researchers and practitioners utilizing the instrument are expected to maintain scholarly integrity by formally citing Groh’s foundational 1998 monograph in all resulting publications and scientific presentations.

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 further 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). Illinois Wesleyan University Digital Commons. http://digitalcommons.iwu.edu/psych_honproj/83
• Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.
• Minuchin, S. (1974). Families and family therapy. Harvard University Press. https://doi.org/10.4159/9780674041127
• 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
• Selman, R. L. (1980). The growth of interpersonal understanding: Developmental and clinical analyses. Academic Press.

Items of the Scale