Straight Talk for Women on the Spectrum

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This is my first post on this site even though I have been lurking for months. I am in my 30's and am recently married. I started looking into Aspergers when my mother-in-law let me know that my husband likely was on the spectrum but had never been officially diagnosed and found, much to my surprise, that the descriptions matched me a bit to well. So now after oodles of reading I am fairly convinced that both of us are simply different sides of the same coin which is both a blessing and a curse.

I have been considering for some time how to introduce myself to the forum and try to get involved but since I am older, married and no longer struggling with many angst related topics being discussed I didn't say anything. A more mature discussion on this topic and its relation to women is a most welcome idea, I hope this thread continues for some time as I could use it.

There are so many questions I could ask but I will keep it to just one for today. How hard is it for you all to interact with social groups? I know that as we get older we become more adept as navigating social constructs, from trial and error if nothing else, but for me most social situations feel like I have to put on my mask. By the time the day, event or what not is done my face literally hurts. Is this fairly typical? It has been this way for me as long as I can recall and because of this I avoid extraneous social affairs if I can.

group social interaction is difficult for me. i don't put on a front, but get frustrated because by the time i think of what i wanted to add to the conversation, the subject has changed. plus i'm naturally just quiet. i usually overeat at parties, because you're not expected to talk with your mouth full. i'm 55. in the past several years, i have learned to do small talk and have accepted that i'll never be the life of the party, so most of my social anxiety ( took meds for it in the '80's) has faded.

i'm quiet. some folks like me anyway. some think i'm stuck up though nothing could be farther from the truth. the bottom line is: i like me and i like most other people. the only acting i do is to return a smile briefly. smiling rarely comes naturally to me. if folks bother to get to know me, they generally like me, too. i behave politely. i listen, adding the appropriate "oh, yes"s or " "sorry that happenned to you"s and i mean it because i'm interested in others. i prefer my people one on one, though. i'm usually the first to say "hi."

sometimes i like to people watch, but must be careful not to stare.

i married an introvert, consequently he, though neurotypical, doesn't expect me to party hearty. we attend work functions and family functions. we usually get through them without me embarassing myself. a genuine interest in others and a half a century of life experience go a long way. i have to be careful not to give unsolicited advice or be overhonest. i'll never be a sales person. i can live with that.

The first question/category to think about ... based on everything that's been shared thus far. Thanks!!

1) Social interactions - What have you noticed about your ability to interact with others throughout the years? Whether or not you're on the spectrum, the ability to comfortably (and some might even say "successfully") socialize generally happens organically as we age. But for those of us who are on the spectrum, this organic process can be considerably more awkward and often requires years of focused practice. What has this experience been like for you, and where are you at with this ever unfolding process right now?

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Last edited by LovesMoose on 29 Aug 2011, 7:34 pm, edited 2 times in total.

Hi! Been here for a while now. Trying to get a DX...but I'm not feeling very confident with the doc who is doing the evaluation. I am thinking she's just going to give me a BS DX to get rid of me. I find out Friday what the results are. I know I am different...this is just the way I am. I am nearly 50, can't change that much (been told lately that I need a better personality. So does the person who said that! I've been told for the past 10 or so years that there's something "off" about me. Well, after my oldest was DXd with AS several years ago, I started doing loads of research. It led me to this site luckily. I am pretty sure I'm an Aspie...but been flying under the radar for so long, that even doctors do not recognize it. I have a few smallish collections (cameras, photography books, other books related to psychology, some model horses, & some stuffed animals. Not typical stuff for a 50 year old.

So anyway, back to the question above.... I've always had difficulty socializing, as long as I can remember (toddler years). I do better in very small groups. I do not do well where there's lots of conversations going on all at once. It's too overwhelming for my brain, & can only hear talking as a bunch of noise without being able to pick out critical parts of people's conversations. After being social for anything beyond a couple of hours, I need a couple of days to recoop. I know this is not normal....people are supposed to get energy & satisfaction from being in social situations. I am quite the opposite, & prefer being alone. Er being with my dog & hubby are ok though.

Hope you don't mind if I sit in on this thread. I'm 34, married, no children (2 kitties!). I can really relate to some of what has been written. Especially this,

and this.

You're more than welcome to join this thread. Thanks for sharing!! And about not having married yet or having children, me, too. My children consist of four cats (the fifth passed away three days ago) and two dogs. Animals ground me and have been my primary focus throughout life.

I'm self-identified as having Aspergers. No wonder I was able to relate so well to students on the spectrum when I was a special education teacher. The politics were disheartening, and as is the case with pretty much everything else in my life, that career (my first and only) tanked pretty fast. But it played a crucial role in this process of opening my eyes and pursuing a diagnosis.

Women display Autism spectrum disorders differently than men do. This is debatable, but I'm a keen observer and know truth when it hits me in the face. Some things are common to all of us, but there's a point where young high-functioning women tend to branch off from the male norm, due to different chemical constitutions and the way we're introduced to and experience/interact with life. And that's why so many of us are either misdiagnosed or dismissed altogether, especially later in life.

So while a formal diagnosis can be helpful, be very careful with this. Many of these highly qualified professionals have good intentions and have made very positive contributions, but unknowingly bring bias into the diagnostic process. They tend to operate from a place of misconception in terms of what a spectrum disorder should like and what they believe to be on the "mild" end of the spectrum. I am of the belief that what they believe to be "mild" is in fact closer to "moderate." This shift in understanding could reframe the entire spectrum and help to redefine the diagnosis process for adults.

Ugh, long ramble. But no better place for this than here!! Anyway, I'm very much into formalities and structure and fully intended to obtain a diagnosis. But during my research it became increasingly clear that the odds were against a fair and balanced process on three counts: I'm high functioning, I'm a woman, and I'm 40 years old. My struggles are numerous, but the ways in which I present can easily be written off as awkward shyness and having grown up in a dysfunctional family. So thanks to a very careful process of research and self-diagnosis, as far as I'm concerned my case is closed. Say hello to a 40-year old woman who has, with much conviction and satisfaction, self-identified as having Aspergers.

Love you all . . .

Carla

Last edited by LovesMoose on 29 Aug 2011, 9:05 pm, edited 1 time in total.

like tomboy4good, i find being with people, especially ones i don't know well, a draining process. i used to think it was just because i'm an introvert (someone who recharges by being alone) as opposed to an extrovert (someone who gets energized by being with people). i get my definitions from kiersy and bates in their book, "please understand me", about the 16 meyers-briggs personality types. i am an introvert, but the aspergers thing makes it worse. just thinking up things to talk about is work for me.

list of aspergers traits at wedmd.com and aarp.org.

The latest Autism TV video on women was insightful. It was uplifting to hear from an informed older woman on the spectrum who has a real understanding of spectrum disorders. Does anyone know of any other videos that feature high functioning older women? I'd appreciate some recommendations. Thank you!!

"This diagnosis is the only thing that gives me peace, gives me a complete, meaningful framework in which to examine all my life experiences and choices.

Welcome, again! We do have some fabulous middle-ager women here, you'll see them come out from time to time (some more than others), I think you'll feel right at home among them, in this sea of youth. "

i feel that way too, i have been self diagnosed for 7-8 years but just officially got diagnosed through vocational rehabilitation. i am another middle ager ( 45 last month) i have always felt different but its when hear other moms discuss their children on the spectrum that i had an "ah ha" moment. i am sure my brother has it too but never discussed it with him. my mom poo-poos it all. ( everyone is anxious, everyone feels that way sometimes etc)

i am sure my aspergers contributed to my divorce ( but not as much as a selfish man who abandoned his children) i am engaged to a new man but we are having problems which may in part be related to my aspergers but we are in counseling.

i was an at hoem mom til my divorce. i never had a "real" job ( just parttime student stuff and 4 years of being a bank teller after the divorce) getting fired was in many ways a relief since my stress level was so high. can't wait to meet others like me ......

Hi Sue ~

I love that first line of your comment. That's exactly what this does for me. The framework I now have in place is incredibly grounding. I have NO idea just how much Aspergers has wrapped itself around my entire way of interacting with the world around me. This has been and continues to be an eye opening process. Friends in this community would be most welcome. Feel free to private message me any time!!

Carla

I think this is a great idea - thanks LovesMoose. I would not be adding anything new to the eloquent posts here. I sure had no idea that I was not alone in these feelings and circumstances. As for me, self diagnosed a few months ago, 52, I have 2 kids one still at home one off in the world, I have a bunch of cats, I am an artist, I have 0 friends but used to it, I have problems going out of the house sometimes but I love to hike and to run. O.k I should stop now.
I would welcome friends from this WP Women's Discussion. Very much so.

Last edited by mntn13 on 02 Sep 2011, 4:21 pm, edited 1 time in total.

*Sigh* Just got back from the analysis of my testing. I'm depressed as I was hoping for an AS assessment to be positive. My IQ has also dropped some 30 points, which bothers me a great deal. But what really gets me is that I was diagnosed with only ADHD, anxiety, & short term memory problems. I am well aware that ADHD & anxiety are co-morbids of Aspergers. No DX of AS though because she says I do not exhibit enough symptoms. Says I don't perserverate (but I do on both photography & AS-even in her office). I was able to refrain from cracking my jaw in her office, but did both on my way there, & on my way home from stress & frustration. I know I have face blindness but it's intermittant ( I have learned to compensate by using my long term memory to remember facial features-I look for similarities in other people I recognize). She also says I have good/appropriate eye contact, & that I don't stare. The thing is....I do stare at flaws (cannot tear my gaze away whether it's something about the teeth, a prominant mole or acne, an injury, etc). It's embarrassing. She has no such features & clear skin, so of course my eyes didn't stare at her.

She blames my extremely rough childhood with years of abuse for my lack of social skills, & other issues. Saying I had poor role models to learn healthy social interactions. I still have problems with math (just observed this the other day in a game of Yahtzee), & there are other long term, ongoing issues. I guess I just mask my symptoms too well to get a proper DX. She wouldn't even consider the self-diagnostic tests that I have taken or the symptoms pertaining to females on the spectrum. I test quite high for AS online. Aspergers explains so much about me, & I just don't see how I can't have it. I don't have money to go to another independent diagnostic facility for another opinion. She also said that the MMPI test came out inconclusive. So 10 years have passed since my last tests, & I still can't get a proper DX.

I tried to explain that I just don't get how to be social...I am awkward at best in all social activities. I am happiest by myself...I don't have to worry about saying or doing the wrong thing, or coming across as a clumsy ox when it comes to dealing with people or being bullied. I also find it exhausting to spend time with people. What else can this possibly be if it's not Aspergers?

Over the years I've noticed I manage to destroy, put off, freak out, or purposely get rid of friends. As well as boyfriends, lovers, and husbands. I have attempted and re-attempted normal socializing and it definitely does not work for me, even now at 52. I am a nice person. I can look normal-ish (my kids help with this) for a short period of time - like at the food store. But it's exhausting because of having to constantly overcome a very strong urge to leave. I can be pleasant with small talk but have to be very careful, well fed and had my tea. Before breakfast or if I am hungry my brain simply does not function as far as communicating goes. And, I usually only "get" my own jokes, unless I am forewarned there is a joke coming.

I really want this to be a place where we can share these things openly. Tomboy and everyone else ... getting a diagnosis is scary. I'm self-identified. I know how I think and feel and see the world, and I know how hard I've had to work to be where I'm at. How I present now, at almost 41 (this month!!) is radically improved compared to previous years AND previous months. My job (wish I could tell you where, but I'm not allowed) is amazing. This company embraces people like me. Several times I was ready to quit (my pattern) because I can't make things work and panic and leave, which is why I'm desperately broke (as always). But THEY didn't give up on me. And finally when I shared my self-diagnosis with my manager, the tides changed. This isn't always a good idea, but in my case it was the best thing I've done in a long time. Our conversation about Aspergers was incredible. She said she wondered if I might have something like that going on, and and from that point forward I've had very open conversations with her and some of my coworkers.

To be fair about this I'm not going to attempt to diagnosis someone or instantly assume that the person who did the diagnosis is poorly trained, uninformed, and not qualified to diagnose adults. But a least some of that is possible, and so please continue to participate in this forum. Your voice matters. My childhood experiences certainly played a considerable role in shaping who I am. That's unavoidable. But when you look at my long 20-page list of notes I compiled when attempting to really explore Aspergers, there's a point where it can become very tricky attempting to disqualify four decades of this stuff on the basis of a screwed up childhood. Child psychologists will tell you how critical the first several years of life are in terms of our emotional and psychological development. And so she was staying true to her profession by taking that into consideration when diagnosing you. Extreme abuse can create behaviors -- and in turn experiences -- that might resemble those of someone on the spectrum. So the person conducting the diagnosis might approach things in a much more careful and conservative manner, which is understandable. However, this can also represent a source of possible bias. There seems to be a lot of discrepancy, and I feel that what someone is looking for in terms of obvious outward signs of a spectrum disorder may not be so obvious but still definitely a part of how we display Aspergers. Women in particular seem much more adapt at acquiring learned behaviors. There just doesn't seem to be much research on this or people who are "highly qualified" to diagnosis older adults. Someone who is "highly qualified" tends to deal more with children and young adults, and there's no way that someone in their teens or early 20s is going to outwardly display in the same "obvious" ways as they will later in life.

Does the diagnostic process account for these things? There's a lot to think about. Please just know that you're welcome here. There are probably a lot of women who have self-identified that may not receive an Aspergers diagnosis. Ugh, time crunch ... must run. But this is triggering a bunch of questions that I want to research. Do keep posting here and reading updates to this thread. I guarantee that you're not alone with any of this.

Carla

Hi. I'm still getting through reading all the messages in this thread! Hadn't seen it in the past several days, so it will take a while. But- hi- 44, got model horses, animals my best friends, etc. Will respond more relevantly when finish reading what all of you said above. Here is something I made in the past that is more of an intro on my perspective- http://www.youtube.com/watch?v=QPSSNKC9S7Q
Meanwhile, glad to meet you.

--seaside