Wondering if I may have AS, too, or if I'm over-analyzing?

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Maude
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24 Jan 2015, 12:04 pm

We're getting ready to do a screening for Aspergers (HFA) in my 6-year-old son, and I've long thought (and am now quite certain) that DH has AS also. But now, after reading an article, I'm looking at myself and wondering if *I* actually have AS also and, if so, what that would mean for our 4-year-old daughter who appears to be NT. Here are things that make me wonder. Any thoughts?

- I have no close friends. When I'm around others, I never know what to say or when to try to enter a conversation, I'm fidgety with my hands, twirling my hair or fiddling with something around me. When I notice I'm doing this, I can stop, though it may unconsciously start up again. I can do quite well one-on-one if I'm with the right person, and I can sometimes fake good social skills within a group for a short amount of time. But being very introverted, I prefer being by myself.
- Eye contact has always made me uncomfortable, but I make an effort.
- My voice becomes child-like/soft-spoken when I'm around anyone other than my immediate family. I notice this, but I don't have control over it. I was often made fun of for this in high school.
- I have great trouble with too much noise or movement, places that are crowded. I find myself moving to the perimeters of crowded places or taking deep breaths. In high school, I seemed to be the only one who was overwhelmed at dances by the bass and the strobelights. I did cope with it, though.
-Windows being rolled down just a bit while driving on the freeway produce a noise that physically HURTS my ears.
- I can't sleep if my blankets aren't heavy enough, even in the heat of summer. I can't sleep with clothes on (blush) because I don't like how they feel when I roll over.
- I'm very sensitive to heat. My heart starts pounding too hard, and I feel faint.
- I cry VERY easily - commercials on TV, "Kodak moments" I witness (even if I don't know the people)
- I get so hyper-focused on what I'm doing sometimes that I forget to eat.
- I have bouts of being obsessed with my interests - baby names and classic literature.
- I remember all my classmates birthday (and I graduated 15 years ago).
- I rehearse what I'm going to say while doing things like standing in line so that I won't sound awkward.
- I'm not very good at communicating verbally on the spot. I would much rather type someone a message.
- I chose to be a stay-home-mom and wife because I'm so uncomfortable around others in a work environment.
- Conflict with others makes me so uncomfortable that it affects my health.
- I constantly feel people are looking at me and judging me, and I want to disappear.
- I've never been able to assert myself.
- I collect classic literature and classic lit t-shirts (one of my obsessions, as mentioned).

As a Baby and Preschooler....
- My mom said I was difficult baby. I cried a lot. I wanted to be held all the time. I wasn't a good sleeper - I wanted just the tip of the pacifier in my mouth at all times.
- I was an early talker. Spoke my first word at 5 months and began speaking in sentences at 18 months.
- I was always drawn to words. My mind would zone in on certain words in nursery rhymes, songs, and such. These words seemed to have a magic quality to me.
- I had a long, drawn out "good night" quote that I had made up (and it was very odd) that I had to say the same way every single night.
- I had (and still do) a very vivid imagination. I've always lived in my own little world.
- I was obsessed with Patsy Cline. I knew her songs by heart at the age of 3, I watched Sweet Dreams over and over, and I asked for a Patsy Cline tape for my 4th birthday.
- I read at a young age.

Grade School-High School-College...
-Became a lot more shy around age 10 and have gotten shyer as years went by
- Use to grind my teeth at night
- I was obsessed with writing poetry and songs. I had written over 500 poems before I graduated high school.
(The rest of my observances from this time have already been recorded.)



momsparky
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24 Jan 2015, 6:31 pm

I think based on genetics alone, if you have a kid with AS you are more than likely to have AS or traits of AS yourself.

It's a real pain to try to get a diagnosis as an adult, though: if you can walk, talk and breathe OK, they will dismiss you with a diagnosis of "anxiety" or something of the like and write you a prescription. (You thought this was bad for kids - I've had a lifetime of alphabet soup.)

I even had extensive neurological testing, but since there aren't any neurologists specializing in AS for adults in my area, the neurologist tested me as though she was looking for TBI or Alzheimer's, and therefore didn't uncover anything except the positives (I apparently excel at visual processing and have an incredible visual working memory.) I took the results to the therapist I'm seeing for executive functioning issues, and he agreed that she simply wasn't asking the right questions.

The good news is that there's a LOT of information out there that can help you figure out how to help yourself - one thing to remember when looking is that females (making the assumption) present very differently from males, and a lot of the literature focuses on male AS. I hear a lot of good things about the book Aspergirls...will have to look for it.



ellemenope
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25 Jan 2015, 3:40 am

Hi! We should start a club. Oh wait-- I think this is one, sort of.
You sound a lot like me in many ways. I think my husband and I have strong AS traits if not AS ourselves, too.
I don't like working or socializing with most other people and prefer being an at-home mom and wife too. The BEST job I ever had was working for a publishing company, surrounding myself in manuscripts and orchestrating the production of books and having very little face-to-face contact with other humans. Well it's a toss-up between that job and an overnight job editing TV and movie subtitles in a dark office with no boss and other bookish night owls. I prefer to communicate through a keyboard too, even talking on the phone is unpleasant.

Since we suspected my son had AS when he was a toddler, I did a lot of digging into the past looking at family members as well as me and my husband. Now that we see these traits we all have in common and can recognize and easily understand some of the ways my son experiences problems and difficulties I think it helps. (My husband and I have totally different AS traits, and my boy has inherited them all from both of us. So he is an interesting mix of our AS traits.) Looking back, I can be a bit easier on myself knowing why I had difficulties with some things growing up. And as I learn how to help my son, I'm learning ways to help myself in some ways too.
It certainly is a weird journey. But it's kind of nice knowing that we are all going through it together and that my son will grow up with perhaps a bit more understanding of the way he is than he might have otherwise.

I have a 20-month old daughter and so far she seems to lean towards the NT side of things. Although, she is turning out to be quite intellectually advanced... which makes me think she may have a bit of AS in her as well. It would be a genetic miracle if she didn't, really. My mother claims that my daughter is very much like I was at her age...so we'll see. She started talking early and now speaks better than other kids 1 or 2 years older than she is. From a young age she's always been very "with it" and aware of everything going on, she is very analytical and grasps complex ideas very easily. Interestingly, on the social side of things, she is kind of manipulative and a good actress- she takes on any role in a social situation that she sees as advantageous (something I was also good at all throughout my childhood). AS girls are very different from AS boys, and she's nothing like her brother was at this age besides being brainy. I'm watching closely as she grows...

As momsparky said, you are more than likely to have AS or at least some strong traits. And if you think your husband is the same, your daughter probably has a good chance too. You'll probably find some other family members are the same too.



ASDMommyASDKid
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25 Jan 2015, 7:13 pm

I got unofficially, informally diagnosed, kind of sort of, by one of my son's diagnostic team, and by that point I had already figured it out (mostly) It seems pretty common to get these realizations when one's child is being identified b/c you start to think about your life in a whole, new way.

I agree we already are kind of a club, here. :)



momsparky
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25 Jan 2015, 9:36 pm

I know this will make everyone on this thread LOL: the psychologist I'm seeing is willing to diagnose me with AS - but I won't accept the diagnosis because his diagnosis is based on him getting to know me and helping me through a bunch of executive functioning issues...and he can't present me with hard, factual evidence. So he's kindly helping me find a neuropsych...

(To some degree, I want a more formal diagnosis not just because I won't accept his say-so, but because I want to make sure there is nothing missing - like my son's pragmatic speech deficit that didn't get caught until three years after his initial diagnosis. But also, facts. Not that that makes me like anyone we know...)



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25 Jan 2015, 10:06 pm

When I started hanging out on forums with adult aspies after my daughter was diagnosed, I was asked more than once if I, myself, was on the spectrum. My gut tells me that, no I am not, though I do think I am a shadow. However, in the process of getting my son diagnosed with ADHD I was quite shocked to find out that I have ADHD. Though in retrospect, I have no idea why I was shocked. It's really quite obvious.

Even though it is quite obvious, I sometimes wonder if I am over-analyzing. But the truth is, I don't think it is surprising that many of us learned about our own atypical wiring when researching to help our kids.


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26 Jan 2015, 9:52 pm

I want into this club, too. LOL You sound like women I could get along with, because I wouldn't have to talk about silly things much. I'm another book person, and my parents, siblings, and husband all have spectrum traits. My daughter is an autism intervention worker and told us we all were on the spectrum; I didn't want to follow through because, like my sons with ADHD, I preferred educational and parenting interventions to drugs and behavioural psychology. Then I needed to have my dd dx because she was having serious difficulties at school, and we now have a pretty autism-friendly environment, where we feel safe and text each other a lot. ;-)
J.



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26 Jan 2015, 10:28 pm

While I think that you may be over-analyzing, you would be wise to seek an opinion from someone who has the training and experience to know what he or she is talking about.


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momsparky
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27 Jan 2015, 10:55 am

Problem is, Fnord, the person you describe in your signature isn't out there for adults - at least not in an accessible way. I live in a large metropolitan area that should have the maximum resources, and I had two options: someone who couldn't differentiate high-functioning autism from anxiety, or someone who really works with kids and who would take my insurance if I was a kid...but who I'd have to pay cash to get something like an ADOS. That's 2 grand out of pocket, just for starters.



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27 Jan 2015, 12:41 pm

I know there are people on the main board who have an issue with self-diagnosis or anything that is not a true, formal diagnosis for whatever reason. That is part of why I am rarely on other portions of this board, though it would probably benefit me to wander there more than I do.

For adults who have never been diagnosed as children, it is a hard road even for those who are not functioning very well/ We had a post by a parent of such a person recently, who wants help, but effectively can't get it.

For those of us who function "well-enough" there really is not necessarily a good enough reason to pursue it. it is expensive, brings few benefits, and puts a label you may find you don't want on your insurance.

For me, knowing the issues I have so I can scaffold things for myself when I need to (and can) and so I can work on some things on my own. If my child was milder I would seriously have considered this approach for him as well. As it happened that would have not been a good choice for him b/c of his particular traits and needs.

I am not going to pursue something for myself I can do without, is super-expensive, and may cause unforeseen issues with insurance etc., just to get AS cred sufficient for that minority of people who think i can't label myself if I want.



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27 Jan 2015, 5:56 pm

Here's the problem: we're starting to talk about medication. If there are issues due to my relationship with the spectrum that will affect how I respond to medication, or whether it is even appropriate, I think I need an appropriate diagnosis.

I completely respect anyone who does not want to be labeled: while labels have been nothing but positive for us, I've seen where they become a part of the problem for other kids, and I imagine other adults.

That said, the more of us who get an accurate diagnosis instead of a general referral to a bottle of pills, the more seriously autism concerns by undiagnosed adults will be taken by the medical community - and the more likely it is that younger people who weren't diagnosed can get the help they need.



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27 Jan 2015, 7:30 pm

momsparky wrote:
Here's the problem: we're starting to talk about medication. If there are issues due to my relationship with the spectrum that will affect how I respond to medication, or whether it is even appropriate, I think I need an appropriate diagnosis.

I completely respect anyone who does not want to be labeled: while labels have been nothing but positive for us, I've seen where they become a part of the problem for other kids, and I imagine other adults.

That said, the more of us who get an accurate diagnosis instead of a general referral to a bottle of pills, the more seriously autism concerns by undiagnosed adults will be taken by the medical community - and the more likely it is that younger people who weren't diagnosed can get the help they need.


MomSparky, my response wasn't a criticism of any adult seeking a diagnosis. I just felt like I needed to expound a bit on why not getting a diagnosis doesn't make someone a poseur or some kind of weird aspie wannabe or something. I wanted to explain further as to why it might be better to just adjust one's life accordingly without one.

There obviously many who would benefit from getting diagnosed as an adult and frankly it should be much easier than it is.



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27 Jan 2015, 8:06 pm

momsparky wrote:
Problem is, Fnord, the person you describe in your signature isn't out there for adults - at least not in an accessible way. I live in a large metropolitan area that should have the maximum resources, and I had two options: someone who couldn't differentiate high-functioning autism from anxiety, or someone who really works with kids and who would take my insurance if I was a kid...but who I'd have to pay cash to get something like an ADOS. That's 2 grand out of pocket, just for starters.
I faced the same situation, too. So I sought the attention of a few local college professors (with PhDs in clinical and behavioral psych) who were able to render their diagnoses for less than half of what I would have paid a commercial mental-health professional, even with a referral from my GP at a well-known health-care organization.


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cathylynn
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27 Jan 2015, 8:12 pm

if you don't want or need an official diagnosis, here's a very brief test based on the criteria docs use:

www.iautistic.com/test_AS.php



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28 Jan 2015, 8:49 am

I understand, no worries.



momsparky
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28 Jan 2015, 9:33 am

cathylynn wrote:
if you don't want or need an official diagnosis, here's a very brief test based on the criteria docs use:

www.iautistic.com/test_AS.php


This is actually a good example of why tests for children don't necessarily apply to adults: while I had many, many of these behaviors as children, I learned that they were unacceptable and began to compensate.

The fact that I can stop myself from stimming, from being rigid and have mechanically learned to follow social cues and developed communication skills that are similar enough to those of an NT person does not make me any less autistic. I also don't face the same issues as a child who is "mindblind" and stims, etc.

What I do face is a crippling anxiety because I have to do ten times the amount of work than an NT person to get by. It is akin to being left-handed, except much more extreme: instead of just compensating for one thing, I have to compensate for every single thing I do. For instance, since I don't naturally pick up on social cues, I have to "learn" every person's individual social language (instead of being able to generalize) and then carefully watch and analyze every reaction they have. I have to make myself look at someone's face - on a good day, I can get the eye contact rhythm (or it's entirely possible that "on a good day" means I'm comfortable enough with the person to not look at them) but on a bad day, as I'm speaking, internally I'm doing that "OK, now I'm staring. OK, now she's talking so I should look her in the eye. OK, that stare is too direct, she's looking uncomfortable, I'm going to look away. OK, now I've looked away at the wrong time and she thinks she's upset me. OK, checking to see if I should look at her face again..."

It's just like there needs to be expanded criterion for girls because girls present differently from boys: adults who have successfully adapted need different criterion and different supports.