This Form Wants to Know....But I'm undecided

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I've been going back and forth on this for the past two months.

I have a very important appointment with a geneticist next week, that will hopefully provide answers to my lifelong joint problems, and I have to send in the forms today. One of the forms wants to know about developmental, behavioral, and/or learning issues and any diagnoses pertaining to such issues. Since I have to take Adderall for the ADHD, I know that it needs to be listed, but I am undecided about disclosing the Sensory Processing disorder and the Autism (which were diagnosed at the same time as the ADHD).

On the one hand, this is a pediatric Geneticist, so they may be more familiar with the disorders. But on the other hand, if they're less familiar they could have many misconceptions that could negatively impact the appointment.

The appointment will be several hours long, and I will be driving 4 hours to get there. Plus there might be many noisy kids there and other sensory stresses. So those things, and the fact that I've been having a lot of meltdowns lately, may make it beneficial to disclose to them.

What if I just list them as their acronyms, and then if they don't know them as ASD or SPD, I can conclude they aren't familiar enough with them? Is this faulty logic?

You should disclose the other diagnoses. There are specific genetic disorders that cause both autism and connective tissue problems, like Fragile X syndrome. Don't rob your doctors of information that will allow them to make the correct diagnosis just because you are afraid they will have misconceptions about autism--what does that matter?

Thanks, I think you're right, and I think that was the direction I've been leaning in. So I've just written it in, in ink and there's no white-out in sight, so take that self-doubting me!
The assessment is for Ehler's Danlos Syndrome, and interestingly there has been some mention of it co-existing with Autism. I think it would be interesting to do a statistical analyses on the matter, so I may do a poll at some point.

I agree and I don't ordinarily disclose ASD to health care providers.

It may get you hurt if the geneticist is prejudiced, but they are often consulted about ASD, and I also think it's the best thing for you, especially if you are going because a cause hasn't yet been identified. You want the best information you can get, which means they need to know.

Plus, the information may be used for research and if you don't disclose makes it less valid.

Yeah, If nothing else, I would hope they would use the info for research!

...Well I finally scanned all of the documents and emailed them, so I am thrilled to no longer have this on my to-do list! Hopefully it will be a useful appointment.

I'm curious now, having read about it. There's a lot it covers. I hope you'll post more about what you learn from the geneticist. Lots of luck with your appointment!

I'm glad to have piqued your interest about the condition, since it could use a lot more awareness (especially in the medical community). And it is a really fascinating syndrome to learn about, so if anyone is in need of a new special interest, they should check it out. So I'll be sure to post more about it after next Friday, when I should have a definitive answer/diagnosis.

Thanks Waterfalls!