Adult Asperger's/SPD question.... long

[bairnmama]

Hello all.... I'm really more of a lurker, but this question has been mulling around in my head for far too long to remain unasked. Do you think it's possible to be an adult with undiagnosed but high-functioning Asperger's with SPD? I've been reading everything I can get my hands on over the past few years (just found this board about 3 months ago) to find out what is going on with my daughter and how to help/mediate issues. I started out when she was 3 with Raising Your Spirited Child, which seemed to help issues until schooling began. Then I read about dyslexia first because of her major struggles in reading, The Mislabled Child, The Out-of-Sync Child, etc. The more I read, the more I see my own childhood in a new light. Let me give some background so I can be confidant in your answers.....

 

My mother always said that until I was about 3 she thought I was "brain-damaged" (her words, not mine): didn't sit, crawl, talk, walk anywhere near the 'normal' range, just cried no matter what was happening or who I was with. Then by 3 1/2 I was asking her at church suppers, "Where do I put my utensils?" I read before K (reading Isaac Asimov/Agatha Christie, etc and explaining my older sister's school lit to her by 5th grade), can write with both hands - backwards and forwards (took mirror image notes in boring classes in high school), was obsessed with dogs (memorized just about every breed standard, subscribed to dog magazines although never had a dog), extremely picky eater (food couldn't touch, nothing spicy, very easily gagged and still can't swallow pills at over 30 yrs old!), can't stand light touch but love, almost need, deep pressure massages, can't tolerate hair in my face, things around my neck, scratchy things, breathing warm air, very high tolerance for pain (would pull out my own hair by the root in class/natural childbirth was no big deal), the list goes on and on. My parents were really great in working with me on things such as buying me divided plates, jeans that snap instead of button, not making an issue of using training wheels past 3rd grade, allowing me to spend hours watching how the piano levers worked, talking with teachers about school menus, etc so I was extremely blessed to have them.

 

Many of these things still bother me as an adult, but I have more control over my surroundings, food, smells in the house, etc. I severly dislike large parties where there is loud music, lots of people, etc. If there are more than 3 or so people talking I never know when to add to the conversation, and when I actually do jump in it's usually 2 or 3 topics back because it took me that long to find an entrance point. My husband is always telling me that people have gotten offended or upset by things I said because the tone, timing, whatever was wrong and I am clueless about the whole thing. I can't tell how my voice is supposed to sound. I don't even try to tell jokes and normally just keep quiet around people that I don't know well so it is really hard to even get to know someone well enough to feel comfortable talking (vicious cycle that one is!). My dh and I were talking about this just the other day after going to a company function and I said I never know what to say to his friends beacause whatever I do say comes out wrong and I just feel stupid. (Just noticed this one... don't use smilies much 'cause it takes too long to figure out which one fits with what I'm saying/meaning.) His response, "And I don't understand that because you are one of the most brilliant thinkers and minds I know". I'm very much a perfectionist and often won't even try something if I think there's a chance I might fail because failure is not an option. I even layed awake last night formulating and phrasing this question in my mind so I could type it in "right"!!! These types of things have been major hurdles in our marriage that we're still working through after 10 yrs!

 

I've spent a fair portion of the last 15 yrs wondering what is wrong with me... why does it seem so easy for others to talk, make friends, etc? I am only now trying to get evaluations for my daughter because I always compared her reactions to my own as a child and they didn't seem too different.... therefore it was a discipline/personality thing instead of a diagnosable thing.... does that make sense? Does any of this make sense? Am I totally blowing everything out of proportion? I guess I just want a reason why most everything just seems so hard and exhausting when dealing with people!

 

Looking forward to seeing responses... and thanks in advance for all of them!

[Stacy in NJ]

I don't have experience with Aspergers myself, but I read this article by Tim Page, the music critic for the Washington Post, some time age. He tells about his experiences and life with undiagnosed Aspergers. I found it really touching. Perhaps you may find something meaningful in it?

 

I just want to add, that if not for strange brilliant people, mankind would probably still be painting pictures on cave walls and trying to capture fire. http://www.newyorker.com/reporting/2007/08/20/070820fa_fact_page

[Kathy in MD]

It sounds like you have SPD, both the proprioceptive (sp) type and the inner ear type. The prop version is why you can't handle light touch but love deep pressure. Your inner ear problems explain your developmental delays in sitting, walking and talking. Your problems with loud noises is another result. It also would explain your problems with joining in a conversation, tone of voice and inappropriate comments. My ds had these same problems. I'm not that familiar with Aspergers, but your symptoms could all be attributed to SPD alone.

 

The conversational problems can be addressed by a good ST. But this is advanced ST, so most don't work with it. It would probably work better if you could get some OT to address your SPD issues, however you'd have to find an OT willing to experiement and I'm not sure if it would have any effect.

 

One product that had some, though limited effect, on my ds's problems with loud noises was The Listening Program. We did it after OT and most of his ST.

 

One last thought. SPD often runs in families. Look for all your dc to have it.

[kRenee]

Absolutely! Searching for help for my child has finally given me answers to things I have been wondering about my entire life.

[dragons in the flower bed]

Hello all.... I'm really more of a lurker, but this question has been mulling around in my head for far too long to remain unasked. Do you think it's possible to be an adult with undiagnosed but high-functioning Asperger's with SPD?

 

YES! I started reading books about Asperger's because of some odd behaviors on the part of my now 8yo. It didn't fit him, especially not when I was able to single out those things and remedy them with simple solutions. But holy moly, did these books ever explain his father! I later learned that kids of Aspies will learn those traits, and so present as though they have Asperger's, but when exposed to therapy, get over those traits so quickly that it becomes apparent they don't really have a disorder.

 

Many individuals are only diagnosed as adults. Definitely get yourself looked at.

[bairnmama]

I don't have experience with Aspergers myself, but I read this article by Tim Page, the music critic for the Washington Post, some time age. He tells about his experiences and life with undiagnosed Aspergers. I found it really touching. Perhaps you may find something meaningful in it?

 

I just want to add, that if not for strange brilliant people, mankind would probably still be painting pictures on cave walls and trying to capture fire. http://www.newyorker.com/reporting/2007/08/20/070820fa_fact_page

 

 

I did read this article.... and WOW! I didn't have quite the experiences in school that he did, but the part about articulating feelings on external issues and deeper emotions really hit home. Thank you so much.

[bairnmama]

Oooops.... I think I deleted the part that mentions who I'm quoting!! Sorry, Cadam!

 

 

Once you find good information hand it to your dh. It sounds like he is a good understanding guy who would be willing to learn and help you out.

 

I have mentioned little things here and there to him in the past and he basically states that you can find evidence of any number of "disorders" if you look hard enough for them. Of course this was when he still considered our daughter's problems to be laziness and just being silly or manipulation. Being active duty military, he's really not a part of the day to day - has done 4 six month deployments since 2003, and countless other schools, missions, training ranging from 3 wks to 16 wks gone at a time. He's been home most of these past 12 months and I think he's starting to see that there may really be other issues working here.

 

I bet you would love the Wilburger brushing! :D

 

I've seen this mentioned on other threads... what is it?

 

 

I bet it would be very interesting and eye opening to do an evaluation with an OT.

 

 

Would this be considered a mental health service? My insurance will pay for up to 8 instances of such services without a referral, but requires a referral from my PCM for anything else. How would I go about finding a practice that gives them?

 

Thanks also to everyone else who has replied!!!! I am really starting to feel relieved.

[JFSinIL]

Yup. When we were kids they just were not diagnosing it, or were mis-diagnosing us, or just calling us "weirdos". I have sound sensitivity, can't tolerate some visual stimuli, was a head-banging toe-walking toddler, idioglossic with my younger sibling (we made up our own language - usually twins do it), never, NEVER made a friend until graduate school - etc. etc. Oh, and from age 11 I decided to know everything about silent film, collected them, read books on them, etc. - not a typical girlie thing to do. Not surprising I have a kid on the spectrum ;) (and a nephew and two cousins, too )

 

I used to tell my kid's neuro that if I had an EEG it would come out plaid!;)