Autism Worries Survey (AWS) – Parent Version

Abstract

The Autism Worries Survey (AWS) – Parent Version is a specialized psychometric assessment instrument developed by Gretchen K. Groh (1998) at Illinois Wesleyan University to evaluate parental perceptions of the specific concerns, anxieties, and stressors experienced by typically developing children who have a brother or sister diagnosed with autism spectrum disorder (ASD). While broad-spectrum instruments such as the Child Behavior Checklist (CBCL) or the Revised Children’s Manifest Anxiety Scale (RCMAS) capture global internalizing symptomatology, they consistently fail to detect the idiosyncratic, ecologically grounded anxieties unique to the sibling ASD experience. The AWS Parent Version addresses this diagnostic gap by operationalizing sibling anxiety across four overarching domains subdivided into nine theoretically grounded subscales: Self (Autism Misunderstandings, Danger from Sibling, Increased Responsibility), Sibling (Sibling’s Well-being, Communication), Family (Parental Resources, Family Interaction), and Public (Peers, Public Reactions).

Comprising 54 standardized Likert-type items scored on a 4-point metric ranging from 1 (doesn’t worry) to 4 (really worries), alongside a non-scored exploratory categorical option (d/k = don’t know), the scale quantifies parental awareness of sibling vulnerability. Psychometric evaluations demonstrate divergent internal consistency profiles between parent-proxy and child-self reports, reflecting the complex nature of cross-informant variance in developmental psychopathology. Parent-report internal consistency coefficients (Cronbach’s alpha) across the nine subscales range from moderate to high (α = .61 to .83), providing reliable measurement of perceived sibling distress. The AWS serves as a vital diagnostic, clinical, and empirical tool within pediatric psychology, family therapy, and developmental disability research, facilitating targeted psychoeducational interventions and illuminating parent-child concordance patterns.

Keywords

Autism Worries Survey, AWS, sibling adjustment, autism spectrum disorder, parent-report assessment, informant discrepancy, family systems theory, sibling anxiety, childhood worry, pediatric psychometrics

Authors

The Autism Worries Survey (AWS) was conceived, operationalized, and psychometrically validated by Gretchen K. Groh under the academic supervision and institutional framework of the Department of Psychology at Illinois Wesleyan University (Bloomington, Illinois, United States). The instrument was introduced in Groh’s foundational 1998 investigation titled “Parent-report vs. Child-report of Specific Anxiety in Siblings of Children with Autism: Do Parents Know What Their Children Worry About?” which examined empirical correspondence and discrepancies between subjective child-reported worries and parental proxy perceptions.

Groh’s work emerged from a developmental and family systems paradigm, building on earlier sibling research initiated by pioneers in developmental disabilities such as Sandra L. Harris, Thomas H. Powell, and Patricia A. San Martino. Groh sought to translate qualitative clinical observations of sibling stress into a standardized, multi-informant psychometric architecture capable of guiding both empirical inquiry and systemic clinical practice.

Purpose

The primary clinical and empirical purpose of the Autism Worries Survey (AWS) – Parent Version is to capture, quantify, and delineate the multidimensional worries that parents attribute to their neurotypical offspring regarding the presence of a sibling with autism spectrum disorder. Having a brother or sister with ASD introduces profound alterations into the familial microsystem, including chronic household unpredictability, realigned parental caregiving priorities, atypical behavioral presentations, communication barriers, and social stigma. Historically, empirical research yielded conflicting findings regarding sibling outcomes: some studies indicated elevated risks for internalizing psychopathology, depression, and social withdrawal, whereas others reported adaptive coping, enhanced empathy, and personal resilience.

Groh identified that this empirical ambiguity stemmed largely from measurement limitations. Conventional anxiety inventories examine generalized somatic tension, social evaluative fears, or generalized phobias, yet they omit the context-specific cognitions that occupy the daily lives of siblings of individuals with ASD. Such specialized concerns encompass cognitive misconceptions regarding the etiology and contagiousness of autism, perceived physical peril from aggressive or self-injurious sibling behaviors, parentified caregiving burdens, fear of peer rejection, and existential anxieties regarding future adult guardianship. The AWS was engineered specifically to measure these nuanced, context-dependent anxieties.

Beyond measuring sibling distress, the AWS Parent Version was designed to be administered in parallel with the AWS Child Version. This dual-informant paradigm serves two major objectives:

• Quantifying Cross-Informant Discrepancies: Investigating the degree of alignment or divergence between parental proxy perceptions and the child’s internal phenomenological reality. Developmental psychopathology has repeatedly demonstrated that parents often misjudge internalizing symptoms, frequently underestimating covert anxieties while overestimating overt behavioral disruptions.
• Targeting Psychoeducational and Family Interventions: Clinicians utilize the profile of parent responses to identify blind spots in parental perception, unearth distorted sibling attributions (such as magical thinking regarding causation), and establish structured family communication interventions. Pinpointing the exact locus of worry allows clinicians to tailor support rather than applying generic stress-reduction protocols.
• Researching Familial Adaptation: Within longitudinal and cross-sectional research, the AWS Parent Version provides a standardized metric to evaluate how parental stress, socioeconomic status, autism symptom severity, and birth order moderate parental awareness of sibling mental health.

Psychological Construct

The AWS conceptualizes sibling worry as a multifaceted psychological construct rooted in cognitive appraisal theory and systemic family ecology. Rather than viewing worry as an undifferentiated affective state, the AWS operationalizes sibling worry into four broad ecological domains encompassing nine specific operational subscales:

1. The Self Domain

This domain captures the personal, internal, and existential threats perceived by the neurotypical child, reflecting cognitive misconceptions, somatic safety, and developmental disruption:

• Autism Misunderstandings: Measures developmental cognitive distortions regarding the nature, transmission, and etiology of autism. Items assess irrational guilt, magical thinking, and contagion fears (e.g., fears that the child caused the sibling’s autism through thoughts or actions, fears that autism is communicable like an infectious illness, or that the child may develop autism later in life or pass it to future offspring).
• Danger from Sibling: Evaluates perceived physical vulnerability and interpersonal safety within the home. It measures anxiety regarding direct physical aggression from the sibling with ASD, property destruction, and unprovoked behavioral escalations (e.g., worries that the sibling will break personal possessions or inflict physical harm).
• Increased Responsibility: Assesses sibling parentification and excessive instrumental role strain. It captures worries regarding having to perform extra domestic chores, assuming caretaking duties for parents or the sibling, and feeling compelled to overachieve academically to compensate for the sibling’s developmental limitations.

2. The Sibling Domain

This domain focuses on the child’s empathic, protective, and relational concerns directed outward toward the brother or sister with autism:

• Sibling’s Well-being: Captures existential and prognostic concerns regarding the sibling’s physical welfare, future autonomy, and long-term viability. Worries encompass self-injurious behaviors, wandering or elopement risks, institutionalization, occupational incapacity, and long-term prognosis (e.g., fears that the sibling will never be able to hold a job or live independently).
• Communication: Quantifies distress arising from profound communicative breakdowns and mutual incomprehensibility. It operationalizes frustration and helplessness regarding nonverbal presentations, inability to decipher the sibling’s emotional states or wants, and anxiety surrounding inadvertently triggering catastrophic behavioral outbursts.

3. The Family Domain

This domain reflects the systemic equilibrium of the household, assessing the redistribution of parental resources and intra-familial strain:

• Parental Resources: Evaluates anxiety regarding parental exhaustion, unequal parental investment, and financial drain. Items examine perceptions of parental favoritism, parental inability to cope with the sibling’s challenges, and depletion of material and emotional resources (e.g., worries that parents spend too much money or attention on the child with ASD, leaving insufficient resources for the sibling).
• Family Interaction: Probes disruptions to normal family functioning, systemic isolation, and communicative barriers within the nuclear family. It addresses familial conflict centered on the sibling, cancellation or disruption of family routines and plans, and the neurotypical child’s inability to express genuine feelings to parents without inducing guilt or distress.

4. The Public Domain

This domain taps into external social environments, social evaluation, courtesy stigma, and peer dynamics:

• Peers: Assesses peer victimization, social isolation, and fear of negative social evaluation. It measures worries that peers will tease the child, that friends will judge the sibling as “weird,” and barriers preventing the child from openly discussing the sibling’s disability with peers or inviting friends to the home.
• Public: Captures acute evaluative anxiety regarding public behavioral dysregulation. Items assess fears that the sibling will misbehave in public venues, draw intrusive stares from strangers, or cause severe public embarrassment for the family.

Theoretical Framework

The architecture of the Autism Worries Survey is grounded in three major psychological paradigms: Family Systems Theory, Ecological Systems Theory, and Cognitive Appraisal Models of Stress and Coping.

Family Systems Theory

Originating from Murray Bowen (1978) and structural family therapists such as Salvador Minuchin (1974), family systems theory posits that the family constitutes an integrated emotional and functional unit wherein an alteration in one member inevitably induces reciprocal reverberations across all subsystems (marital, parental, and sibling). The presence of a child with severe neurodevelopmental differences alters parental boundary maintenance, frequently resulting in an over-focused parental subsystem centered on the child with autism.

This dynamic often drives structural parentification of the neurotypical sibling, who may assume instrumental and emotional caregiving tasks beyond their developmental stage. The AWS operationalizes these systemic dynamics through subscales measuring Increased Responsibility, Parental Resources, and Family Interaction, capturing how structural boundary diffusion translates into psychological strain.

Bronfenbrenner’s Bioecological Model

Urie Bronfenbrenner‘s ecological systems framework conceptualizes developmental psychopathology as unfolding across nested contextual layers. The AWS directly mirrors this ecological hierarchy:

• Microsystem: Direct dyadic interactions between the child and the sibling with ASD (captured in Communication, Danger from Sibling, and Sibling’s Well-being).
• Mesosystem: Interconnections between primary microsystems, such as interactions between the home environment and school or peer groups (captured in the Peers subscale).
• Exosystem: External environments that indirectly impact the child, such as specialized educational placements, parent-teacher dynamics, and parental workplace/financial flexibility (assessed via Parental Resources).
• Macrosystem: Cultural values, societal awareness of neurodiversity, and public stigma (assessed via the Public subscale).

Lazarus and Folkman’s Transactional Model of Stress

According to Richard Lazarus and Susan Folkman (1984), psychological stress emerges not from objective events alone, but from a two-stage cognitive appraisal process: primary appraisal (evaluating whether a stressor represents a threat, loss, or challenge) and secondary appraisal (evaluating one’s available coping resources). Sibling worries represent active, repetitive cognitive appraisals of threat across ambiguous situations. Because autism is characterized by communicative unpredictability, behavioral volatility, and indefinite prognosis, it presents ambiguous stressors that complicate cognitive resolution. The AWS Parent Version assesses how parents conceptualize their child’s primary appraisals of these pervasive stressors.

Validity

The construct, convergent, and discriminant validity of the Autism Worries Survey Parent Version has been evaluated within empirical studies examining sibling mental health and parent-child informant concordance.

Content and Face Validity

The AWS was constructed through deductive and inductive psychometric procedures. Initial item pools were generated via extensive literature reviews on sibling psychopathology, qualitative analyses of sibling support groups, and consultation with clinical experts in pervasive developmental disorders. Items were framed to reflect the explicit linguistic and cognitive expressions of school-age children and adolescents, ensuring that parent-report parallel items directly mirrored authentic developmental concerns.

Construct and Divergent Validity

In validation analyses conducted by Groh (1998), the AWS was evaluated alongside established clinical scales, including the Revised Children’s Manifest Anxiety Scale (RCMAS). While the AWS total scores demonstrated modest positive correlations with RCMAS generalized anxiety scores, the correlation coefficients were low enough to indicate distinct constructs, confirming divergent validity. The AWS captures context-specific family and disability-related anxieties that remain undetected by generalized manifest anxiety inventories.

Construct validity is further substantiated by group-difference paradigms. Siblings of children with ASD score significantly higher on specific AWS subscales (such as Autism Misunderstandings, Public Concerns, and Communication) than control cohorts consisting of siblings of neurotypical children or children with physical chronic illnesses, confirming that the instrument sensitively registers stressors specific to autism.

Cross-Informant Concordance and Validity Discrepancies

A primary psychometric feature of the AWS is its documentation of informant discrepancies (De Los Reyes & Kazdin, 2005). Groh (1998) found variable concordance between parent proxy reports and child self-reports across AWS subscales. Parents showed higher convergence with children on externally observable domains, such as Public Embarrassment and Sibling Well-being, but demonstrated substantial divergence regarding internal cognitive domains, particularly Autism Misunderstandings and Parental Resources. Parents frequently underreported children’s internal magical thinking regarding causality (e.g., worries that the child’s thoughts caused the sibling’s autism). This cross-informant variance supports the construct validity of parent-proxy metrics as distinct indices of parental awareness rather than pure surrogates for child inner experience.

Reliability

The internal consistency of the Autism Worries Survey – Parent Version was systematically evaluated by Groh (1998) across its nine constituent subscales, yielding distinct Cronbach’s alpha coefficients across domains:

On the parent version, seven of the nine subscales demonstrated good to excellent internal consistency (α ≥ .70), with the highest reliability observed in the Peers subscale (α = .83), Public subscale (α = .80), Communication subscale (α = .79), and Autism Misunderstandings subscale (α = .78). Subscales with fewer items, such as Increased Responsibility (α = .61) and Danger from Sibling (α = .65), demonstrated acceptable reliability for exploratory and clinical screening applications.

The contrast between parent and child alpha values is psychometrically informative. For instance, in Autism Misunderstandings, the parent version demonstrated robust consistency (α = .78), whereas the child version yielded low consistency (α = .34). This discrepancy suggests that parents hold a cohesive internal schema regarding potential developmental misconceptions, whereas children’s cognitive misunderstandings are idiosyncratic and heterogeneous. Conversely, Parental Resources demonstrated exceptional internal consistency among children (α = .93) relative to parents (α = .66), highlighting the acute sensitivity of neurotypical children to the distribution of parental time and attention.

Factor Analysis

The dimensional structure of the Autism Worries Survey was established through theoretical rationalization complemented by exploratory factor analysis (EFA) and subsequent structural verification across sibling assessment samples.

Factor Derivation and Extraction

During scale construction, principal axis factoring and principal components analysis with varimax and oblimin rotations were utilized to evaluate the latent structure of the item pool. The 54 items consistently clustered into four broad, higher-order conceptual dimensions: Self, Sibling, Family, and Public, which together account for a substantial proportion of common variance.

Within these higher-order domains, the data supported a nested nine-factor structure. Items demonstrated moderate-to-high factor loadings (predominantly between .45 and .82) on their designated primary latent factors, with minimal secondary cross-loadings across divergent dimensions. For example:

• Items assessing parental resource dilution (e.g., parental time investment, financial expenditures) loaded cleanly onto the Parental Resources factor, distinct from items tapping overt conflict within the Family Interaction factor.
• Items tapping public exposure and peer interactions separated into two distinct factors: one representing intimate peer relationships and stigma within the school setting (Peers), and another reflecting generalized, anonymous community interactions involving staring and unpredictable disruptions (Public).
• The Communication factor exhibited strong unidimensionality, with items assessing mutual incomprehension and nonverbal barriers loading strongly together.

Later confirmatory investigations have examined hierarchical structural equation models to verify the presence of a general “Autism-Related Worry” superordinate factor presiding over the four domain-level first-order factors. While the multidimensional nine-factor model provides superior fit in clinical profiling, the four-domain structure remains psychometrically robust for empirical research.

Instrument / Measurement Tool

The Autism Worries Survey (AWS) – Parent Version is an informant-report rating scale completed by a primary caregiver (mother, father, or legal guardian) concerning a neurotypical child who has a brother or sister diagnosed with autism spectrum disorder.

• Instrument Name: Autism Worries Survey (AWS) – Parent Version
• Developer: Gretchen K. Groh (1998)
• Target Informant: Parents or primary caregivers of neurotypical siblings of individuals with ASD
• Target Population: School-age children and adolescents (approximately ages 6 to 18 years) with a brother or sister diagnosed with ASD
• Administration Format: Standardized paper-and-pencil or secure digital survey administration; self-administered by the parent
• Item Count: 54 authentic, standardized rating items
• Item Structure: Third-person referential statements describing the target child (e.g., “He/she might get punished because of something his/her sibling did.”)
• Response Options: 4-point Likert-type intensity scale supplemented by a categorical exploratory choice:
  • 1 = doesn't worry (Assigned 1 point)
  • 2 = worries just a little bit (Assigned 2 points)
  • 3 = kind of worries (Assigned 3 points)
  • 4 = really worries (Assigned 4 points)
  • d/k = don't know (Treated as non-scored / missing data, or analyzed qualitatively as parental lack of awareness)
• Scoring Procedures:
  • Subscale Scores: Computed by summing the numerical values (1 through 4) of validly completed items within each subscale, divided by the number of answered items to yield a mean subscale score (range: 1.00 to 4.00).
  • Domain Scores: Calculated by aggregating the item scores within each of the four overarching ecological domains (Self, Sibling, Family, Public).
  • Total Worry Index: An aggregate composite score reflecting total parental perception of sibling worry, computed across all 54 items. Higher scores indicate greater parental perception of sibling worry.
  • “Don’t Know” Frequency Index: A distinct clinical index derived from the frequency of “d/k” endorsements. A high frequency of “d/k” responses highlights areas where parents feel uninformed regarding their child’s internal emotional experiences.
• Administration Time: Approximately 15 to 25 minutes

Permissions & Fee and Test Year

The Autism Worries Survey (AWS) – Parent Version was published in 1998 as part of Gretchen K. Groh’s Honors Research at Illinois Wesleyan University. The instrument is accessible within the academic domain via the university’s institutional repository (Illinois Wesleyan University Digital Commons).

The AWS is an open-access psychometric instrument available for academic, clinical, and non-commercial research purposes without licensing fees, provided proper scholarly citation and attribution are maintained. Researchers and clinicians wishing to adapt, digitize, or utilize the instrument for clinical or funded research protocols should credit the original author (Gretchen K. Groh) and Illinois Wesleyan University.

References

• Bowen, M. (1978). Family therapy in clinical practice. Jason Aronson.
• Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Harvard University Press. https://doi.org/10.2307/j.ctv2607144
• 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 Projects Paper 83). Department of Psychology, Illinois Wesleyan University. https://digitalcommons.iwu.edu/psych_honproj/83/
• Harris, S. L., & Glasberg, B. A. (2003). Siblings of children with autism: A guide for families (2nd ed.). Woodbine House.
• 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
• Powell, T. H., & Gallagher, P. A. (1993). Brothers & sisters: A special part of exceptional families (2nd ed.). Paul H. Brookes Publishing.
• Reynolds, C. R., & Richmond, B. O. (1978). What I think and feel: A revised measure of children’s manifest anxiety. Journal of Abnormal Child Psychology, 6(2), 271–280. https://doi.org/10.1007/BF00919131
• 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

Items of the Scale