Table 2.
Parental Responses on the Community ASD Diagnosis Questionnaire
| Question | Response | Full Sample | Sample Stratified by CBE ASD Diagnosis |
Sample Stratified by Community ASD Diagnosis |
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|---|---|---|---|---|---|---|
| Negative | Positive | Negative | Positive | |||
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|
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| n (%) | n (%) | n (%) | n (%) | n (%) | ||
| 1. Have health/educational professionals ever told you that your son shows symptoms of ASD?a | Yes | 30 (61%) | 7 (14%) | 23 (47%) | 14 (29%) | 16 (33%) |
| No | 19 (39%) | 6 (12%) | 13 (27%) | 18 (37%) | 1 (2%) | |
|
| ||||||
| 2. In your opinion, do you feel that your son shows symptoms of ASD? | Yes | 34 (69%) | 7 (14%) | 27 (55%) | 18 (37%) | 16 (33%) |
| No | 15 (31%) | 6 (12%) | 9 (18%) | 14 (29%) | 1 (2%) | |
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| 3. Does your son currently have an ASD diagnosis?b | Yes | 17 (35%) | 2 (4%) | 15 (31%) | 0 (0%) | 17 (35%) |
| No | 32 (65%) | 11 (23%) | 21 (43%) | 32 (65%) | 0 (0%) | |
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| 4. In your opinion, do you believe that your son has ASD? | Yes | 22 (45%) | 3 (6%) | 19 (39%) | 6 (12%) | 16 (33%) |
| No | 27 (55%) | 10 (20%) | 17 (35%) | 26 (53%) | 1 (2%) | |
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| 5. Has your son ever been formally evaluated for ASD, either recently or when he was younger? | Yes | 29 (59%) | 8 (16%) | 21 (43%) | 14 (29%) | 15 (31%) |
| No | 20 (41%) | 5 (10%) | 15 (31%) | 18 (37%) | 2 (4%) | |
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| 6. In what type of setting was your son’s ASD evaluation conducted? | Educational | 9 (20%) | 1 (2%) | 8 (18%) | 3 (7%) | 6 (13%) |
| Clinical or medical | 16 (35%) | 4 (9%) | 12 (27%) | 7 (16%) | 9 (20%) | |
| Research | 5 (11%) | 3 (7%) | 2 (4%) | 4 (9%) | 1 (2%) | |
| FXS specialty clinic | 12 (27%) | 4 (9%) | 8 (18%) | 7 (15%) | 5 (11%) | |
| ASD specialty clinic | 3 (7%) | 2 (4%) | 1 (2%) | 0 (0%) | 3 (7%) | |
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| 7. Do you feel that the clinician(s) who conducted your son’s ASD evaluation had adequate knowledge about fragile X syndrome to make an accurate diagnosis? | Yes | 19 (65%) | 4 (14%) | 15 (51%) | 9 (31%) | 10 (35%) |
| No | 6 (21%) | 2 (7%) | 4 (14%) | 3 (10%) | 3 (10%) | |
| I don’t know | 4 (14%) | 2 (7%) | 2 (7%) | 2 (7%) | 2 (7%) | |
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| 8. Do you feel that knowing whether or not your son has ASD is helpful when making medical decisions? | Yes | 24 (57%) | 6 (14%) | 18 (43%) | 11 (26%) | 13 (31%) |
| No | 18 (43%) | 6 (14%) | 12 (29%) | 15 (36%) | 3 (7%) | |
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| 9. Do you feel that knowing whether or not your son has ASD is helpful when making educational decisions? | Yes | 29 (71%) | 6 (15%) | 23 (56%) | 15 (37%) | 14 (34%) |
| No | 12 (29%) | 5 (12%) | 7 (17%) | 11 (27%) | 1 (2%) | |
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| 10. Do you feel that you have adequate knowledge about how ASD co-occurs with FXS to make informed medical/educational decisions about your son’s care? | Yes | 38 (90%) | 11 (26%) | 27 (65%) | 23 (55%) | 15 (36%) |
| No | 4 (10%) | 1 (2%) | 3 (7%) | 3 (7%) | 1 (2%) | |
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| 11. Does your son receive therapies/services that are designed for individuals with ASD (such as ABA therapy or participating in an autism-support classroom)? | Yes | 16 (36%) | 2 (5%) | 14 (32%) | 7 (16%) | 9 (20%) |
| No | 24 (55%) | 8 (18%) | 16 (35%) | 19 (43%) | 5 (11%) | |
| I don’t know | 4 (9%) | 2 (5%) | 2 (5%) | 2 (5%) | 2 (5%) | |
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| 12. Do you feel that your son would benefit from services that are tailored towards individuals with ASD? | Yes | 23 (47%) | 3 (6%) | 20 (41%) | 9 (18%) | 14 (29%) |
| No | 10 (20%) | 4 (8%) | 6 (12%) | 9 (18%) | 1 (2%) | |
| I don’t know | 16 (33%) | 6 (12%) | 10 (20%) | 14 (29%) | 2 (4%) | |
Note.
a
ASD was defined in the questionnaire header, prior to the first item, with the following statement: “***Autism Spectrum Disorder (ASD), includes: autism, autism spectrum, pervasive developmental disorder-not otherwise specified (PDD-NOS), and Asperger’s syndrome”.
b
Parents who responded “yes” were provided with an open field to write in the age of diagnosis in years.