I NEED HELP I think my 18 year old has Asperger's

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karpher
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27 Jan 2017, 4:46 pm

Something struck me while dealing with a situation with my 18 year old daughter, to google NF1 and autism. To my surprise "Asperger's" kept coming up. I had never heard of "Asperger's" before. I felt like a weight was lifted off of me, so big I can not even describe. I thought to myself "wow, there may be a reason why I always felt she was different. I couldn't share with anyone what I was going through, because the moment I did, they just chalked it up to "spoiled brat syndrome." I finally shared my suspicions with my mother that I suspected "Asperger's" and her receptiveness has only given me more strength. The more I read, the more I had to research. Is there anyone out there that had their child diagnosed when they were 18 years old, who knew their child was different but didn't know how to relate to doctor's what you felt because when the words came out of your mouth you only heard what sounded like whining about your child? It is difficult to even speak with her geneticist about this because she is now an "adult" and because she doesn't think anything is wrong with her. Any help would be so very much appreciated. I need help.



ASDMommyASDKid
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27 Jan 2017, 7:01 pm

I had to Google NF1, but based on what I read and the fact that resulting growths can occur in the brain, you may have a rough time getting her a diagnosis for AS. Unless something is known co-morbidity, based on my observation doctors really don't like to complicate things that way.

The fact that she is 18, and uninterested, is probably the biggest obstacle, and frankly as an adult, there is not a lot of assistance available. So, I am not necessarily sure what good it would do her, other than as a self-knowledge thing, assuming she is autistic. Asperger's is not a current diagnosis as it has been subsumed by the umbrella term of autism.

That said, many of us adults are undiagnosed, and while it is controversial on this board--being unofficially undiagnosed as a result of my son's diagnosis--I obviously don't see an issue with using the knowledge of what helps autistic people without an official diagnosis, if this information is of use to her.

What goals is she concerned about that relate to possible autism?



iliketrees
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28 Jan 2017, 1:28 am

Quote:
Is there anyone out there that had their child diagnosed when they were 18 years old, who knew their child was different

I noticed after posting this I'm in the parents section, but I was diagnosed when I was 18 and my parents always knew I was different, but I didn't know what it was when they first asked me, and didn't think anything was wrong because I didn't have any awareness that I was different - don't know if it's the same but that's the case for me.



somanyspoons
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31 Jan 2017, 3:16 pm

Forgive me for being Captain Obvious here, but at 18, your daughter isn't a child. In the US at least, you cannot moderate her medical world like you could have last year. That means the choice to get tested, or to identify with a label, is entirely, 100%, all-the-way up to her. (I'm assuming you don't have legal gaurdianship over her.)

I know this seems like nit-picking but it is SO important. There's this thing were people see those with disabilities as permanent children. A large amount of our self-advocacy groups' work is to help the general population understand this. We are adults and must be treated as such.

Discussing your adult daughter's medical condition, without stated consent from her, is a violation of her rights as a human being who happens to have a disability. This is her information. It's about her. She owns it.

It's very jarring the way we do this in our society - one day she's 17 and you have control, and the next day she's 18 and you have no control. But this is the system we have right now. And I won't violate your daughter's rights by discussing her case without her participation.