Autism Worries Survey (AWS) (Parent Version)

Abstract

The Autism Worries Survey (AWS) (Parent Version) is a specialized psychological assessment instrument designed to capture the unique dimensions of worry and anxiety experienced by typically developing children who have a sibling diagnosed with Autism Spectrum Disorder (ASD). This specific version relies on parent report, allowing caregivers to quantify their perception of their child’s concerns across four major domains: Self, Sibling, Family, and Public challenges. Developed by Gretchen K. Groh, the AWS provides essential, granular data for researchers and clinicians aiming to understand the specific psycho-social stressors affecting siblings within families managing a developmental disability.

Keywords

Autism Spectrum Disorder, Sibling Anxiety, Parent Report, Worry Assessment, Family Stress, Psychological Assessment, Developmental Disability, Groh, 1998

Authors

Gretchen K. Groh

[quads id=5]

Purpose

The fundamental purpose of the AWS is to systematically measure both the frequency and intensity of worries specific to having a sibling with Autism Spectrum Disorder. This instrument differentiates itself from general anxiety scales by focusing exclusively on concerns directly arising from the sibling’s diagnosis, behaviors, and the resulting impact on the family environment and the typically developing child’s quality of life.

A key feature of the AWS is the existence of both parent and child versions, which enables critical comparative research. This dual reporting structure addresses the clinical question of whether parents accurately perceive the nature and severity of their child’s specific sibling anxiety. The insights gained from comparing these perspectives are vital for developing targeted and effective psychoeducational and therapeutic interventions aimed at alleviating stress within the family unit.

Construct

The AWS measures the latent construct of Sibling-Specific Worry and Anxiety related to the presence of a developmental disability in a family member. This construct is recognized as multidimensional, encompassing a broad spectrum of concerns ranging from tangible, concrete fears (e.g., physical harm, future caregiving burden) to more abstract, socio-emotional worries (e.g., social stigma, concerns about genetic risk, perceived parental neglect).

The scale operationalizes this complex construct through 57 items distributed across nine distinct subscales, which are further grouped into four overarching thematic domains: Self, Sibling, Family, and Public. This comprehensive structure ensures that the instrument captures the diverse emotional and social challenges commonly faced by siblings of individuals with ASD, drawing heavily on themes identified in clinical practice and relevant research literature.

Validity

While the initial documentation prioritized reliability, the design of the AWS demonstrates strong indications of Content Validity. The items were meticulously developed to reflect documented and known stressors unique to siblings of children diagnosed with ASD, ensuring relevance to the target construct.

Furthermore, the clear empirical organization of items into nine distinct factors and four major thematic domains, as supported by the subsequent Factor Analysis, lends credence to its Construct Validity. This structure confirms that the instrument successfully measures theoretically distinct dimensions of worry, such as differentiating concerns about the sibling’s future well-being from worries regarding the typically developing child’s own social standing or access to parental resources.

Reliability

The internal consistency of the AWS (Parent Version) was rigorously evaluated using Cronbach’s Alpha (α) coefficients for each subscale. The resulting parent-reported reliability coefficients generally fall within the acceptable to good range for psychological scales, confirming that the items within each specific subscale consistently measure the same underlying dimension of worry.

The reliability statistics for the Parent Version are itemized below, demonstrating adequate cohesion across the measured domains:

• Autism Misunderstandings: α = .78
• Danger from Sibling: α = .65
• Increased Responsibility: α = .61
• Sibling’s Well-being: α = .74
• Communication: α = .79
• Parental Resources: α = .66
• Family Interaction: α = .75
• Peers: α = .83
• Public: α = .80

Factor Analysis

The AWS utilizes a robust multi-factor model comprising nine specific factors, which are structurally organized into four broader, conceptually distinct thematic domains. This organization provides a detailed profile of sibling worry.

The four domains and their constituent subscales are:

• I. SELF Domain: Concerns related to the typically developing child’s own feelings, personal risk, and assigned roles.
  • Autism Misunderstandings (7 items): Worries concerning the possibility of “catching” the disorder, causing the disorder, or having the disorder oneself.
  • Danger from Sibling (4 items): Fears regarding potential physical harm, either inflicted upon the sibling or caused by the sibling toward others.
  • Increased Responsibility (6 items): Stress associated with disproportionate household chores, caregiving duties, or academic pressure to compensate for the sibling’s limitations.
• II. SIBLING Domain: Concerns focused directly on the well-being, characteristics, and future of the sibling with ASD.
  • Sibling’s Well-being (8 items): Worries about the sibling’s future prospects, such as employment, ability to live independently, or potential deterioration of their condition.
  • Communication (5 items): Difficulties in understanding the sibling’s emotional state or needs, or frustration regarding the sibling’s inability to express themselves effectively.
• III. FAMILY Domain: Concerns regarding parental stress, resource allocation, and family interaction dynamics.
  • Parental Resources (4 items): Worries concerning parental stress levels, financial strain on the family, or the perception of insufficient attention directed toward the typically developing child.
  • Family Interaction (8 items): Concerns related to family conflict, the inability to participate in typical social or recreational activities, or difficulty discussing the diagnosis openly with parents.
• IV. PUBLIC Domain: Concerns related to external perceptions, social situations, and stigma.
  • Peers (7 items): Worries about being teased, judged, or experiencing social isolation due to the sibling’s condition.
  • Public (4 items): Fears regarding the sibling misbehaving in public settings, causing embarrassment, or attracting unwanted stares from strangers.

Instrument

Test Type: Psychological assessment instrument; Specific Worry/Anxiety Scale

Format: Self-report (Child version exists) and Parent-report (AWS Parent Version)

Language Available: English (Original study context)

Population Group: Parents of typically developing children who have a sibling with Autism Spectrum Disorder.

Age Group: Typically developing siblings (Children/Adolescents), reported via Parent proxy.

Population Details: Parents reporting on the worries of their non-disabled child regarding their sibling with ASD.

Test Methodology: A comprehensive 57-item questionnaire utilizing a Likert-type scale format to gauge the perceived frequency or intensity of specific worries. The scoring key is: 1=doesn’t worry, 2=worries just a little bit, 3=kind of worries, 4=really worries, d/k=don’t know.

Keywords

Autism Worries Survey, AWS, Siblings of ASD, Caregiver Report, Psychological Measurement, Anxiety Domains, Family Psychology, Developmental Disorders

[quads id=5]

Authors

Author ORCID Identifier: Not specified in source.

Affiliation Email addresses: Not specified in source.

Correspondence Address: Not specified in source.

Permissions & Fee and Test Year

The Autism Worries Survey (AWS) was initially developed and documented by Gretchen K. Groh in 1998 as part of an Honors Project completed at Illinois Wesleyan University. Since no standard fee structure is publicly specified in the source material, users intending to utilize the scale for research, clinical, or educational purposes are strongly advised to seek formal permission from the original author or the institution holding the copyright for the instrument.

Test Year: 1998

Reference’s

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? Illinois Wesleyan University. Honors Projects. Paper 83. Retrieved from: http://digitalcommons.iwu.edu/psych_honproj/83

The full instrument is available on pages 44-46 of the aforementioned thesis. The original PDF can be downloaded here: http://digitalcommons.iwu.edu/cgi/viewcontent.cgi?article=1072&context=psych_honproj

[quads id=5]

Items of the Autism Worries Survey (AWS) (Parent Version)

IMPORTANT: The following scale items must be preserved in their original language and must not be changed in any way.

1. He/she might catch autism from his/her sibling.
2. He/she might get punished because of something his/her sibling did.
3. Something he/she did, said, or thought caused his/her sibling’s autism.
4. His/her sibling will hurt him/herself.
5. His/her mom or dad worries too much about his/her sibling.
6. His/she parents don’t love him/her as much as they love his/her sibling.
7. His/her family can’t do things that other families do because of his/her sibling.
8. Other kids might tease him/her about his/her sibling.
9. His/her sibling will act weird in front of other people.
10. He/she will have to take care of his/her sibling when they are older.
11. He/she might also have autism.
12. His/her sibling will break his/her things.
13. He/she gets angry at his/her sibling too much.
14. His/her sibling will get lost.
15. His/her mom/dad can’t handle his/her sibling’s problems.
16. He/she doesn’t get enough attention from his/her parents because his/her sibling needs so much of their attention.
17. He/she can’t talk to his/her parents about his/her sibling’s autism.
18. He/she doesn’t have very many friends because his/her sibling has autism.
19. People say bad things about his/her sibling.
20. His/her sibling will never be able to have a job when he/she is older.
21. He/she is going to eventually get autism
22. His/her sibling will hurt him/her.
23. Something bad will happen to his/her sibling while he/she is taking care of them.
24. His/her sibling’s teachers don’t take care of them as well as they should.
25. If his/her parents knew how he/she really feels about his/her sibling, they would be upset.
26. His/her parents spend too much money on his/her sibling and there won’t be enough left for him/her.
27. His/her family fights too much about his/her sibling
28. He/she can’t talk to his/her friends about his/her sibling.
29. His/her sibling will misbehave in a public place.
30. If he/she has children when he/she grows up, the children might have autism.
31. If his/her sibling somehow got well, he/she might get sick.
32. His/her sibling will hurt someone else.
33. He/she has to do more chores around the house because his/her sibling has autism.
34. Something bad might happen to his/her sibling.
35. He/she has to take care of his/her mom or dad a lot.
36. His/her parents don’t spend enough time with him/her because they are busy with his/her sibling
37. His/her sibling will mess up their family’s- plans.
38. If he/she have friends come over, his/her sibling will do something embarrassing.
39. He/she has to do extra well in school to make up for what his/her sibling cannot do.
40. His/her extended family members don’t really understand his/her sibling.
41. He/she isn’t nice enough to his/her sibling.
42. Other kids think he/she is weird because of his/her sibling.
43. People stare at his/her sibling.
44. His/her sibling will not be able to live on his/her own when he/she is older.
45. Other kids think his/her sibling is weird.
46. His/her sibling will embarrass him/her in public.
47. His/her sibling’s autism might be a punishment from God.
48. If kids at his/her school knew about his/her brother/sister, the kids would think. or say bad things.
49. His/her brother/sister won’t ever talk or won’t talk much.
50. His/her brother/sister has too many bad habits.
51. He/she doesn’t understand what his/her brother/sister feels.
52. His/her brother/sister might get worse.
53. That they might do something to set their brother/sister off.
54. He/she can’t figure out what is wrong when his/her brother/sister is upset.
55. He/she doesn’t know what his/her brother/sister wants.
56. His/her brother/sister can’t explain what is wrong with him/her.
57. He/she has to be extra careful around his/her brother/sister.