Genetic testing for autism

[Anonymous]

I was surprised to see Genetic testing for autism as one of the recommendations in my child's autism evaluation write up. Is that fairly standard now?

Has anyone done this? Was it useful? Did it change any actions you are taking?

I don't think it came up in our post-evaluation appointment on zoom, so I didn't get to ask questions about how reliable it is and whether it would change any actions on our part, so I'm curious to see others' experiences before setting up even more appointments.

[Anonymous]

No, this is one of the pointless canned recommendations they make. Maybe if there’s some sign of a genetic syndrome but it doesn’t really make a difference for therapy.

[Anonymous]

I did that for the first child who is high functioning, nothing useful or change our action for treatment or so. Kid needs to draw blood for the test. We parents also draw blood as part of testing, nothing useful as well.

Our 2nd child has developmental delay, and she is suspected of adhd and high functioning autism. So, I don't know what the genetic testing is good for, maybe only good for research or data purposes.

[Anonymous]

OP here. Thanks for the replies. Perhaps I should mention that this was a high functioning older child (11) without intellectual disability. Based on my limited research, genetic testing seems even less useful at an older age than if they were younger, but I want to be open minded in case there are reasons that I haven't seen.

[Anonymous]

We did this. It caused me a ton of anxiety and gained no answers. I think my DS's developmental pediatrician is just academically interested in the genetic connection.

[Anonymous]

We did it, all normal. I wouldn’t pay for it.

[Anonymous]

I only would if I had a specific reason. Like a family history of a genetic condition, or a physical red flag of a specific condition.

[Anonymous]

We have high functioning kids on the spectrum and we have had this conversation in our house. For awhile I was really concerned that my HFA child would go to college and meet someone within his limited academic interests and would possibly marry someone with a genetic predisposition to autism. I wondered about two people on the spectrum reproducing. would they produce a child who is severely autistic? Simon Baron-Cohen writes about this in his work on assortative mating, and there are a couple of pieces in Wired magazine about why there is so much autism in Silicon Valley. The assumption is that two parents with autism met while working on a group project coding something, or playing games online or whatever, and they might not have been the best genetic match. This is kind of why there are so many tech guys who are really into eugenics, etc.

[Anonymous]

I think if you can get your insurance to cover this and already have any life insurance you need in place, it doesn’t hurt. But the likelihood that you will get anything useful in terms of information is low so if it’s something you would have to pay a lot of money out of pocket for I wouldn’t bother. We did it for my DS who is also HFA, no intellectual disability and found nothing.

[Anonymous]

I was told that in 2/3 of cards, there are no findings. In 1/3 they find “something” but when I asked the genetic counselor whether there would be something to do differently in the event of that finding, she said probably not.

[Anonymous]

Anonymous wrote:I was told that in 2/3 of cards, there are no findings. In 1/3 they find “something” but when I asked the genetic counselor whether there would be something to do differently in the event of that finding, she said probably not.

*cases*

[Anonymous]

So even if they have autism it isn't found? Is that what happens? The test doesn't really work for detecting it?

[Anonymous]

Anonymous wrote:So even if they have autism it isn't found? Is that what happens? The test doesn't really work for detecting it?

It can happen that the text does not identify a genetic cause, yes. Not all cases have a genetic cause, at least not one that we understand at this time.

[Anonymous]

We did it for our DS1 with high functioning autism and gained nothing from the tests. Given that I suspect DH has high functioning autism and his father seems to have some sort of undiagnosed personality disorder, I would not be surprised there is a genetic component to DS1’s autism. However, the autism has not affected DH’a social interactions or career abilities. DS1 is more developmentally delayed but we started treatment very early so hopefully he will excel in life even with the delays.

[Anonymous]

It could be to see if the child has a syndrome and not Autism.