Genome Project

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We are in the genome project and I just finished up the first set of phone interiews. WOW. They were very thorough and it was hard to answer all their questions. I did my best, but I don't remember all the things my children have done over the years. I'm sure it's helped that I've been reading posts in here because it's reminded me of lots of things the kids used to do, but I'm sure I forgot half of it. It's hard enough to keep things straight today, much less remember if my 13yo did this or that at the age of three.

Why did you choose to get involved with the genome project?

Because I think it could turn up helpful information over time. It's not all about curing. Someday they might be able to tell the difference between different types of ASDs or other similar kinds of things that often get misdiagnosed with a simple blood test. I think it could make things a lot less confusing for folks who get bounced around with the wrong treatments and wrong diagnosis. Read the stories around here. There are people being given heavy duty medications because their AS is misdiagnosed as a personality disorder. Wouldn't it be nice for Aspies to know right off the bat that they are fine?

With the latest findings indicating that autism is caused by random deletions and no two people have the same pattern of deletions, I'm curious what the genome project could come up with that would be helpful.

I'm surprised that there are people being given heavy-duty medications for a (mis)diagnosis of a personality disorder. Most of the literature I've seen says that personality disorders don't respond to medications and take years of therapy to heal, if they heal at all. The times when I was misdiagnosed with a personality disorder, I didn't even get therapy, let alone drugs. I was pretty much told, "well, you've got a personality disorder so there's really nothing we can do for you" and sent away.

I think it would be great if AS could be diagnosed with a genetic test, but given the scientific developments I've seen, I don't think it's very likely. It's brave of you to let them study your kids in the hope that it could work out that way, though. Thank you for being willing to take the risks for the rest of us.

It depends on the personality disorder and the dr treating it. People with BPD are routinely given prozac by some Drs because it can alleviate their anxiety over their lack of connection to their own personality. When my ex husband was correctly diagnosed with BPD he was given Prozac for that reason.

I don't think that recent finding is necessarily proven, and if it is it's because of the genome project. There is more we don't know than what we do know, so to say there is no more need for it is quite silly. Because I have two children, an uncle (and possibly more than one, but one for sure), and likely a grandmother with AS, and a third child who's probably somewhere in the spectrum (depends on which dr you ask) it's highly likely that what is causing it in my family is more than random deletions.Or maybe not. Studying these things is the only way to find out.

Besides, it's science. If you look at data objectively you may find out all kinds of interesting stuff, not just what you were looking for.

I didn't think I said there was no more need for it. If I did, I guess you're right and I'm silly.



I''m curious to know if the random deletions get passed down and there are familial strains of what we call autism or if whatever triggers an autistic person's deletions to be in the active code ranges is what triggers their children's deletions to be in the active code range, although possibly in different areas. In other words, are autistic people passing on the deletions or the tendency toward deletions?



True, I just admire the bravery of the people willing to be the test subjects. My life history has created a rather large fear of that in me. That's why I initially asked why you chose to do it, because it seems an incredibly bold move to me as I'd rather hide as far away from the white coats as possible.

Ah, I see what you meant. I'm sorry about being a little defensive. I don't blae you for being more wary. I'm wary of certain kinds of white coats, but I think of this as more white coated scientists and I'm very comfortable with that.

I'd like to know those things too, about the deletions, but I wouldn't be surprised if they found out that there are completely different things going on. It's such a relatively new science I find it a little exciting that there is so much to learn.

Unfortunately one of my children has had to be hospitalized and I'm not sure if he'll be out in time for the researchers scheduled visit to do their next round of data collection. Hopefully I'll know soon.