Autism Worries Survey (AWS) – Parent Version

Abstract

The Autism Worries Survey (AWS), Parent Version, is a specialized psychological scale developed in 1998 by Gretchen K. Groh. Its primary objective is to measure the frequency and intensity of specific worries experienced by children who have a sibling diagnosed with Autism Spectrum Disorder (ASD). This particular version relies on parent report, requiring parents to estimate the level of anxiety or concern their non-ASD child experiences across 57 items. The instrument is structured around nine distinct factors grouped into four major domains: Self-related concerns, Sibling-related concerns, Family dynamics, and Public perception. It utilizes a 4-point Likert scale to quantify worry levels.

Keywords

Autism Worries Survey, AWS, sibling concerns, parent report, specific anxiety, ASD, family dynamics, psychological assessment, Gretchen K. Groh.

Authors

Gretchen K. Groh

[quads id=5]

Purpose

The core purpose of the Autism Worries Survey (AWS) is to provide a structured method for assessing the unique and often overlooked psychological stress experienced by children growing up with an autistic sibling. This instrument moves beyond general measures of distress to capture specific, context-dependent anxieties, such as fears of contagion, responsibility burdens, and social stigma.

By separating the worries into nine distinct subscales, the AWS allows clinicians and researchers to pinpoint specific areas where the non-autistic child may be experiencing the highest levels of concern, facilitating targeted intervention and support strategies for the entire family unit. The Parent Version aims to capture the parental understanding of the child’s internal experience.

Construct

The AWS measures a multidimensional construct of specific worries and anxiety related to living with a sibling who has autism. The worries are categorized into four overarching domains: Self (concerns about personal future, safety, or role), Sibling (concerns about the sibling’s well-being and communication), Family (concerns about parental resources and conflict), and Public (concerns about social stigma and peer perception).

This construct acknowledges that the challenges faced by siblings extend beyond simple emotional adjustment, encompassing complex cognitive and social fears, including misunderstandings about the nature of autism, fears of genetic inheritance, and concerns regarding future caregiving responsibilities.

Validity

The AWS was developed as part of an honors thesis project, suggesting strong initial attention to content domain definition. The clear and comprehensive structure, organized into nine theoretically derived subscales, supports strong content validity, ensuring that the instrument covers the full breadth of anxieties commonly reported by siblings of children with ASD.

While detailed reports on comprehensive psychometric validation (such as criterion or construct validity against established anxiety measures) require further study, the robust factor structure identified—which separates worries related to self-perception from worries related to public interaction—provides initial evidence for its structural validity.

Reliability

The reliability of the Parent Version of the AWS is generally strong, particularly within the context of psychological scale development. Reliability was assessed using Cronbach’s alpha (internal consistency) for the nine subscales.

The parent-reported reliability scores demonstrate acceptable to high consistency across most subscales. Noteworthy parent alpha coefficients include:

• Peers: 0.83
• Communication: 0.79
• Autism Misunderstandings: 0.78
• Family Interaction: 0.75
• Sibling’s Well-being: 0.74
• Public: 0.80

The lowest coefficients for the Parent Version were found in Increased Responsibility (0.61) and Danger from Sibling (0.65), suggesting that these specific parental interpretations of their child’s worries might be slightly less internally consistent than other domains.

Factor Analysis

The Autism Worries Survey (AWS) is designed to measure nine specific factors, which are grouped into four major domains:

• I. SELF DOMAIN: Focuses on the non-ASD child’s personal fears and roles.
  • Autism Misunderstandings (7 items): Parent alpha = 0.78
  • Danger from Sibling (4 items): Parent alpha = 0.65
  • Increased Responsibility (6 items): Parent alpha = 0.61
• II. SIBLING DOMAIN: Focuses on the future and current state of the autistic sibling.
  • Sibling’s Well-being (8 items): Parent alpha = 0.74
  • Communication (5 items): Parent alpha = 0.79
• III. FAMILY DOMAIN: Focuses on the impact of autism on family relationships and resources.
  • Parental Resources (4 items): Parent alpha = 0.66
  • Family Interaction (8 items): Parent alpha = 0.75
• IV. PUBLIC DOMAIN: Focuses on external perceptions and social stigma.
  • Peers (7 items): Parent alpha = 0.83
  • Public (4 items): Parent alpha = 0.80

Instrument

Test Type: Psychological scale; Self-report/Parent-report measure of specific anxiety.

Format: 57 items utilizing a 4-point Likert scale response format, plus a “don’t know” option.

Language Available: English (Original).

Population Group: Parents reporting on the worries of their non-ASD children.

Age Group: Developed for use with school-age children (reported by parents).

Population Details: Siblings of children diagnosed with Autism.

Test Methodology: Respondents rate the extent to which the sibling worries about each statement using the following scale: 1=doesn’t worry, 2=worries just a little bit, 3=kind of worries, 4=really worries, d/k= don’t know.

Keywords

ASD, sibling stress, parental perception, psychometrics, Cronbach’s alpha, family burden, social stigma.

[quads id=5]

Authors

Author ORCID Identifier: Not available.

Affiliation Email addresses: Not available.

Correspondence Address: Not available.

Permissions & Fee and Test Year

The Autism Worries Survey (AWS) was originally developed in 1998 by Gretchen K. Groh as part of an Honors Project at Illinois Wesleyan University. Information regarding formal copyright or commercial usage fees is not generally provided, as the instrument is typically accessed via the associated academic thesis.

Reference’s

Groh ’98, Gretchen K., “Parent-report vs. Child-report of Specific Anxiety in Siblings of Children with Autism: Do Parents Know What Their Children Worry About?” (1998). Illinois Wesleyan University. Honors Projects. Paper 83. The full thesis, which includes the instrument on pages 44-46, is available online.

The original PDF can be downloaded here: http://digitalcommons.iwu.edu/cgi/viewcontent.cgi?article=1072&context=psych_honproj

Reference citation link: http://digitalcommons.iwu.edu/psych_honproj/83

[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/her 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.