Table 3.
Barriers for participants with at least one child with ASD that would keep them from participating in CMA genetic testing (N = 45).
| Theme | n (%) | Illustrative quote |
|---|---|---|
| Cost | 33 (73.3) |
The cost for a child with autism is already so expensive just for the therapy and getting help for the child. You know, adding another cost would be difficult. (Male, White, Income: $75–95K)
Cost would be something to consider. I know a lot of genetic testing can be expensive. Umm cost would be a factor. (Male, White, Income: $35–55K) Maybe the expense of it. If it wasn't covered by insurance that might be something that would sway me. (Female, White, Income: $75–95K) |
|
| ||
| Risk and pain associated with testing | 17 (37.8) |
The concerns would be… how invasive it is and then the potential psychological issues it may cause them. (Male, White, Income: $35–55K)
Maybe the concern would be about him getting his blood taken. It would be difficult for him. He doesn't like it when they take blood samples. He's afraid of needles. It would be difficult. (Female, Hispanic/Latino, Income: $15–35K) |
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| Fear of result | 14 (33.3) |
I think it probably would open up a big can of worms as far as pointing fingers at where those genes came from. (Female, White, Income: >$95K)
My concerns would be it [test result] comes back positive. (Female, Hispanic/Latino, $35–55K) |
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| Lack of motivation for testing | 7 (15.6) | Me personally, I wouldn't want to do it [undergo CMA testing]. I don't think it would change anything. It sort of why we resisted the diagnosis from the very beginning… I don't want a preconceived notion of who they're going to be. (Female, Hispanic/Latino, Income: $33–55K) |
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| Transportation and/or scheduling Issues | 6 (13.3) |
We really don't have a whole lot of time to be able to do things like this testing. I do not want them out of school; they need that kind of structure. (Female, White, Income: $15–35K)
The procedure and the timing because of my job I can't get off, because there are only two people in the office, me and my boss.… (Female, White, Income: <$15K) |
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| Lack of knowledge about testing | 5 (11.1) |
I would need more information for them [children with autism] if they are going to do a blood test. (Female, Hispanic/Latino, Income: $35–55K)
It would all depend on what the test will give you. If the test says, ‘Your son might have autism, your son might not,' I wouldn't want that because I wouldn't want to go looking for the problem without a cause. If you can give it to me definitively, ‘yes your son has the markers. He's going to be expected by the autism spectrum in some way.' Then sure, I might want to know that up front. (Female, White, Income: >$95K) I don't know. I don't know enough about the test. (Male, White, Income: $75–95K) |