Autism Worries Survey (AWS) (Parent Version)

Abstract

The Autism Worries Survey (AWS) (Parent Version) is a comprehensive psychometric instrument designed to assess the specific anxieties and worries experienced by typically developing children who have a sibling diagnosed with Autism Spectrum Disorder (ASD), as reported by their parents. This 57-item measure covers a wide range of concerns, offering insights into the emotional and practical burdens placed upon the non-autistic sibling within the family system.

Developed by Gretchen K. Groh in 1998, the AWS aims to quantify the unique psychosocial stressors faced by this population, differentiating concerns across domains related to the self, the sibling’s well-being, family dynamics, and public perception. The parent version demonstrates generally strong internal consistency across its nine subscales, making it a valuable tool for research in family psychology and special needs populations.

Keywords

Autism Worries Survey, AWS, sibling, anxiety, parent report, Autism Spectrum Disorder, family stress, special needs.

Authors

Gretchen K. Groh

Purpose

The primary purpose of the Autism Worries Survey (AWS) is to systematically identify and quantify the specific worries that typically developing siblings harbor regarding their brother or sister with autism. This instrument helps researchers and clinicians move beyond general measures of distress to pinpoint the precise sources of anxiety related to the sibling’s diagnosis and its impact on the family unit.

By obtaining a parent-proxy report, the scale allows for the assessment of younger children’s worries or those concerns that the child may not verbally express. The results provide critical information necessary for developing targeted interventions and support programs aimed at improving the mental health and coping mechanisms of siblings in these unique family structures.

Construct

The AWS measures the psychological construct of specific, situation-based worry in siblings of children with ASD. Unlike generalized anxiety, the AWS focuses on concerns directly stemming from the challenges associated with autism, including issues of stigma, future responsibility, potential harm, parental attention, and misunderstanding the condition.

The scale operationalizes this construct through nine distinct factors organized under four major domains (Self, Sibling, Family, and Public). This multidimensional approach ensures a comprehensive capture of the stressors, ranging from internal feelings of guilt or fear (Self domain) to external pressures related to social interaction and public behavior (Public domain).

Validity

While the foundational paper primarily focuses on reliability and factor structure, the instrument exhibits strong content validity. The 57 items were likely developed based on extensive clinical observation and qualitative interviews with siblings and families, ensuring that the content accurately reflects the common worries experienced by this specific population.

The clear delineation of items into theoretically relevant subscales (as evidenced in the Factor Analysis section) suggests good construct validity, supporting the notion that the AWS measures distinct and meaningful facets of sibling worry rather than a single, monolithic construct. Further validation studies would be necessary to establish robust criterion and predictive validity against established measures of general anxiety or adjustment.

Reliability

The reliability of the AWS (Parent Version) is reported using Cronbach’s alpha to measure internal consistency across the nine subscales. The parent-report scores generally demonstrate acceptable to strong reliability, suggesting that the items within each factor cohere well.

Specific parent alpha coefficients are detailed below:

• Autism Misunderstandings: .78
• Danger from Sibling: .65
• Increased Responsibility: .61
• Sibling’s Well-being: .74
• Communication: .79
• Parental Resources: .66 (Note: The child alpha for this factor was exceptionally high at .93)
• Family Interaction: .75
• Peers: .83
• Public: .80

The strong alphas observed in factors such as Peers (.83) and Communication (.79) indicate high internal consistency in parental reports concerning these specific areas of worry.

Factor Analysis

The AWS is organized into nine distinct factors, categorized under four primary domains, reflecting the multidimensional nature of sibling worries regarding Autism Spectrum Disorder. The factor structure helps researchers isolate specific areas of concern for targeted analysis.

• SELF Domain:
  • Autism Misunderstandings (7 items; parent alpha=.78)
  • Danger from Sibling (4 items; parent alpha=.65)
  • Increased Responsibility (6 items; parent alpha=.61)
• SIBLING Domain:
  • Sibling’s Well-being (8 items; parent alpha=.74)
  • Communication (5 items; parent alpha=.79)
• FAMILY Domain:
  • Parental Resources (4 items; parent alpha=.66)
  • Family Interaction (8 items; parent alpha=.75)
• PUBLIC Domain:
  • Peers (7 items; parent alpha=.83)
  • Public (4 items; parent alpha=.80)

This structure indicates that worries are not uniformly distributed but cluster around areas such as personal health fears, future caregiving roles, and social stigma.

Instrument

Test Type: Self-report/Parent-proxy measure of specific worry and anxiety.

Format: 57 items scored on a 4-point Likert scale. The response options are: 1 = doesn’t worry, 2 = worries just a little bit, 3 = kind of worries, 4 = really worries, plus a d/k (don’t know) option.

Language Available: English (Original research).

Population Group: Parents reporting on their typically developing child.

Age Group: Children and adolescents who have a sibling with ASD.

Population Details: Siblings of children diagnosed with Autism Spectrum Disorder.

Test Methodology: Quantitative survey administered to parents acting as informants regarding their non-autistic child’s emotional state.

Keywords

psychometrics, internal consistency, Cronbach’s alpha, special needs, family psychology, quantitative research, developmental disabilities.

Authors

Author ORCID Identifier: Not available in source material.

Affiliation Email addresses: Not available in source material.

Correspondence Address: Not available in source material.

Permissions & Fee and Test Year

Test Year: 1998

Permissions & Fee: The instrument was published as part of an Honors Project and is accessible through the Illinois Wesleyan University digital repository. It is generally considered available for academic and research use without fee, provided appropriate citation is given.

Reference’s

The primary source for the Autism Worries Survey (AWS) and its psychometric properties is:

Groh, Gretchen 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. The original document can be accessed online at: http://digitalcommons.iwu.edu/psych_honproj/83

The instrument itself, including all 57 items, can be found on pages 44-46 of the original paper. The original PDF can be downloaded here: http://digitalcommons.iwu.edu/cgi/viewcontent.cgi?article=1072&context=psych_honproj

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.