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Genetic Testing After Diagnosis?
A MyAutismTeam Member asked a question πŸ’­

Finally, after fighting with my initial pediatrician and my insurance company, my son was officially diagnosed with asd today. Our developmental ped recommended a genetics test. I guess I don't really understand why. I was hoping to get some insight on it. My son was concieved using a sperm donor. I'm not even sure if it's medically necessary, as there is no chance of using the same donor in the future. Is there merit to the test for other reasons besides seeing the likelihood of autism in… read more

posted April 24, 2017
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A MyAutismTeam Member

The question to ask is if your developmental pediatrician and neurologist suspects another disorder at play. My kids were diagnosed with Mitochondrial Disorder and it made the world of difference for us. My son went from completely non verbal to having enough speech to communicate his wants and needs and we also discovered that he reads. 90 percent of his behavior issues are gone. Some disorders that are similar or present together with autism could be treated. Not cured but treated.

posted April 24, 2017
A MyAutismTeam Member

Thank you so much, dualspectrumdad. That's exactly how I was feeling. I don't see the merit in spending so much money on something that most likely will not help my son. I really appreciate your insight.

posted April 24, 2017
A MyAutismTeam Member

We did a whole bunch of testing where it cost us a bunch of money insurance did not pay. We did not learn anything and even if we had it would not help the children. I always recommend the Fragike X test because that makes a difference but the rest really doesn't at this point.

They have not come far enough in genetics that you can get any answers. Your money is better spent on therapy that you know works. Just my opinion but what causes autism doesn't help people that have it.

posted April 24, 2017
A MyAutismTeam Member

Same here, we were tested for Fragile X syndrome (at my request), but my son fell in the gray zone. 2 Geneticists and Developmental pedi say he is unaffected by that. So now after diagnoses of ASD, anxiety, ADHD, and mild intellectual disability, the developmental pediatrician wants more Genetic testing. I'm done having kids and he has no siblings. I wondered what the merits are as well to be honest. I guess it never hurts to get more info, but dreading the blood draw! Maybe we should both ask what specific tests they plan to run at our evaluations and why?

posted April 24, 2017

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