Asperger’s

Life Updates, Driving Anxiety, and Abusive Ex

It’s been quite a while since my last post!  I have basically been focused on things like church and personal issues for the past year, and ditching politics except for small doses to keep up.  My faith crisis corresponded with the discovery of how much a friend actually cared about me….In October my health took a drastic change, and in November the doctor found a simple endometrial hyperplasia.  In other words, precancerous.  I’m under treatment and the last biopsy showed no more hyperplasia.  But I have to keep getting periodic biopsies for a while.  So my perimenopause is sucking.  The past year and a half has been a wild ride, very stressful and always on my mind.  This while I also finally got my latest book published, Doctor Bismarck: A Tale of Obsession.  Also went to a few Goth Industrial concerts over the past year or two, which was amazing: Gary Numan, VNV Nation, KMFDM, Ministry/Numan/Front Line Assembly.  Discovered Chant and Traitrs, which were side-acts.  Almost got injured during the Ministry concert by moshers.  Things have happened; I’ve just been posting about it on Facebook or in e-mails to friends instead of here.

Found a couple of things the past couple of days that I finally wanted to write about:

First, DL Mayfield posted Autism and Driving Anxiety on Tuesday.  I researched nearby doctors and my insurance last year and discovered that I can’t afford an official diagnosis, so I still figure I land somewhere between Asperger’s and NVLD, without knowing for sure.  Could be both, could be one or the other.  It’s definitely at least one of them.  And here is more evidence, yet another story from someone with an official diagnosis with driving issues.  Her story sounds very familiar, with quotes such as:

In general here is a snapshot of the research: it seems that one third of able autistic people drive independently. In comparison, about 80 percent of non-autistic people get their driver’s license. Another study showed that despite high levels of interest, only one in three autistic adolescents obtain their driving license.

The most common reason autistic people choose not to drive a car is due to fear and anxiety, whether due to executive dysfunction, overstimulation, hypervigilance, anticipatory anxiety, or other factors. What is hard is that for many people in a car-centric society like the US, a driver’s license can be key to mobility, employment, and social interactions — which all impact mental health. Public transport can also be non-existent, overstimulating, or simply inaccessible to autistic people, leaving people to be dependent on cars to get their basic needs met.

But here in the U.S., most teenagers are pressured or at least encouraged to obtain their driver’s license as a sign they are entering “adulthood.” So what happens when this isn’t a possibility for us — or when driving causes us more harm than we realize? Perhaps today we can slowly begin to ask questions about the systems that capitalism claims are normal (and beneficial), but which impact marginalized people more than others.

…But when we drove to the bigger town 30 minutes away and I got behind the wheel with the DMV instructor next to me, I felt as though I was floating. It didn’t feel like I was driving, but like I was playing a video game.

…Any chance I could get, I was trying to get other people to drive my car or I would bum rides off of other people. My older sister was the main person in my life who has always driven me around but I would try and get ANYONE else to drive all throughout my 20s. Since I was squarely in my manic-pixie-dream-autistic phase, people must have just thought I was quirky, I guess? What didn’t help was the fact that I never had money and most of the cars I drove were pieces of junk (some without power steering) and I also got in a succession of minor fender benders during these years.

…I could barely force myself to drive to my doctor’s appointments once every few days, and as I drove I felt like my world was narrowing in. Smaller smaller smaller. I didn’t want to go anywhere and I felt sickening dread at the thought of driving, but I didn’t know how to tell anyone. This isn’t how a grown-ass adult is supposed to feel, right?

…Friends would ask to meet up somewhere and when I showed up inwardly I would be a mess from the journey, but unable to process or even admit how stressful it was for me to drive to another neighborhood or a new-to-me location. I felt so embarrassed by the amount of anxiety driving caused me, and I often felt like I was the only person in the world who couldn’t seem to get a handle on this one element of being an “adult”.

But now, a few years into my autism diagnosis and learning about disability, I can start to offer myself a bit of curiosity and compassion. I think about the last few decades of my life when it comes to driving and I see: anticipatory anxiety, executive dysfunction, dissociation, intrusive thoughts, emotional overwhelm, anxiety attacks, triggering of past driving-related traumas . . . and wow. No wonder that when my life gets more stressful my ability to drive without anxiety seems to fly right out the window.

…But I am astonished at the lack of research, resources, and spaces for people to process their driving anxiety and how it impacts their life.

I’ve written about this here, a post which was also shared on the podcast Living With NLD by Jennifer Purcell.  I’ve been shamed for my driving anxiety, even by someone who called himself my husband for a time.  He complained every time I needed his help getting someplace, telling me I should be doing it myself, even though I was a puddle of nerves every time I tried to drive.  He even complained about taking me to get some milk and orange juice for my breakfast after I moved into my dorm and had no car and no way to get into town.  I still occasionally have nightmares about driving even though I stopped doing it 20+ years ago.  Because of Phil and others, I have felt shame for not being able to drive, even though I have gotten into accidents and had various problems because of my visual-spatial issues.  There is a stigma placed on this, as if you are somehow not “adulting” properly and just need to apply yourself and you’ll be fine.

Another thing I discovered is also related to Phil.  I read this post on Reddit about Catholic marriage counseling in the 90s, when Phil and I were officially engaged (and unofficially married).  He insisted that we use Natural Family Planning; I tried to find information and materials for it, but struggled, since this was before Google and the Internet explosion, and I had to rely on what I found in health books and the local stores.  There was a bit about testing PH, so I thought, PH paper.  PH paper does exist–we used it in science class, after all–but I couldn’t find it anywhere, and didn’t know where to look.  (Nowadays you can get it on Amazon!)  I was very confused by how to do NFP accurately, especially since I had irregular cycles and was getting very strange results and periods that didn’t match what the books said I was supposed to have.  Some of the directions made no sense.

So I asked Phil if we could get more information from the local NFP clinic.  We tried calling but there was no answer.  But he refused to pursue it, because he was afraid they would refuse to teach me because we weren’t officially married yet and it would encourage premarital sex.  Yet the post on Reddit said that engaged couples were required to go through marriage prep that included NFP training!  (And that there were couples already living together who went through this marriage prep.)  Meanwhile, whenever I was in what appeared to be a “fertile” time and he got horny, he’d beg me to have sex, saying, “Don’t you want a beautiful baby boy?”

I swear it feels like Phil was deliberately trying to sabotage my efforts, like he wanted to trap me in a pregnancy, like what happened to the girl he eventually legally married (and later divorced).

 

 

 

 

 

ASD / NVLD diagnoses, bad friends, and political PTSD

Some people insist that people can’t “label” themselves without a diagnosis–whether it’s NVLD or Asperger’s or whatever else is out there.  But here are a few things to consider:

1) Getting or not getting a diagnosis doesn’t make your issues disappear or appear.  If you have NVLD or Asperger’s, you still have it whether or not you’re officially diagnosed with it.  And you know your brain better than anybody else does.

2) We have a well-known autism center right here in town and connected to the hospital.  The founder used to help NVLD students as well as autistic ones.  But the cost of diagnosis is $4,500–if you’re a child.  If you’re an adult, they won’t even evaluate you.

3) This article by Devon Price points out various problems people can encounter before and after getting a diagnosis: Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That/ Know the costs — and the legal risks.

For example:

Very few insurance plans cover Autism assessments for adults at all, so most diagnosis-seekers will have to pay out of pocket.

…To this day, many Autism assessors won’t even see adults at all. Even those who do frequently rely on evaluation instruments that were developed for children.

…I hear from women who have been turned away from an Autism evaluation because “women aren’t Autistic” on a shockingly frequent basis. It’s not unusual for potentially Autistic people to be rejected from diagnosis for things like being “too polite,” wearing makeup, or having any friends.

…There is no therapeutic “treatment” for Autism, no way for Autistic traits to be reduced or “cured,” and most in our community consider the idea of curing Autism to be deeply dangerous anyway.

…What we really need, then, is the acceptance and support necessary to live more freely as ourselves (which has been demonstrated to carry many psychological benefits).

[Note: I have said the same thing regarding various traits, such as NVLD, selective mutism, and introversion.  Even before I knew anything about these traits, I resented being told that I had to change, rather than other people accepting me for the way I am.  ABA is related to gay conversion therapy and should be viewed the same–along with attempts to punish/”change” the NVLDer or introvert.]

…An Autism Diagnosis Can Impede Your Gender Transition

…In many countries, it is impossible to immigrate and become a citizen if you are Autistic — or if you have an Autistic child.

…Diagnosed Autistics Can Lose Their Legal Autonomy

An ableist person who does not respect you will not suddenly begin respecting you the moment a psychiatrist says you have a ‘disorder.’ If anything, a person who once doubted the existence of your disability will simply turn around and use your diagnosis to discredit your judgement once you have it.

A diagnosis is not what makes a person Autistic. Autistics existed long before psychiatry decided there was something ‘wrong’ with us, and we will remain long after it ceases to do so. You get to decide for yourself if the label “Autistic” is useful to you, if it helps you understand yourself better, communicate who you are to others, and advocate for your specific boundaries and needs. Nearly all Autistic community spaces vocally support self-diagnosis, and consider inquiring into a person’s diagnosis status to be pointless and impolite.

…And various other things which are far too numerous too name.  Note that at the end, the author does also list reasons TO get diagnosed, so he’s not just a Negative Nelly.

I know very well what it’s like to know you have something going on in your head–to have it reinforced repeatedly throughout your life through, say, traffic accidents, difficulty making proper judgment calls, people ghosting or mocking you, bullying, teachers complaining about your handwriting or your trouble understanding directions, getting lost, on and on.  Yet you tell people you have a disorder, and they don’t believe you.

I see the traits and read message boards for people with NVLD and Asperger’s, and identify with a huge number of them.  It explains everything I’ve ever gone through.  On August 26, 2010, I took the autism spectrum quotient test and scored 33–which means “clinically significant levels of autistic traits.”

I envy young people with these disorders because they’re more likely to have been diagnosed early and have somebody helping them, so while they still struggle with many things, they seem to be doing much better than I ever did.  When I was a kid and young adult, people just dismissed it all as a character flaw and yelled at you, putting you out in the world and expecting you to just figure things out.  If you didn’t, you were called babyish or told to try harder.  Now kids get IEPs and help dealing with social situations.  They get a diagnosis early that tells them it’s not just them being weird, that there are others like them and it’s okay.

At the same time, it’s troubling to think of all the things people have bullied/criticized/abused me for doing, which research has proven all trace back to NVLD/Asperger’s.  I want to go back in time and bop them on the head for being ableist and abusing somebody with autism.  People reject or scold or mock or abuse me over and over again for traits I didn’t ask for and have no control over.  Or they deny I have NVLD or Asperger’s, while complaining about the very traits that prove I have them!

I now know that my stint in counseling in college would’ve gone much better if either I or my counselor had known anything about learning disabilities.  I was looking for an explanation of why people kept mistreating me yet I didn’t know how to stop it; she kept going on about things like meeting people and conquering shyness.  It didn’t feel helpful at all, and then I ran out of free sessions.

It wasn’t helpful because my splenium is likely small, hindering communication between the left and right parts of the brain.  If somebody can fix that, my issues will probably melt away!  Maybe I would have an accurate view of where the traffic is.  Maybe I would no longer have weird visual illusions that distort the angle of the road and make me almost run into someone.  Maybe I would know what to do in a split-second crisis, or stop getting lost inside a building.  Maybe I would read people properly and know when and how to enter a conversation.  Maybe I would know if someone is manipulating me.  Conquering shyness does nothing to help that.

So I know what this is like, along with what it’s like to have people dismiss what you know very well is true, simply because some professional has not diagnosed you.  But these disorders existed long before diagnoses ever did.  And as I have discovered, getting that diagnosis is a lot harder for adults.  NVLD still isn’t in the DSM–though it used to be, and there are talks of putting it back in with a changed label to make it more accurate.  (Nonverbal doesn’t mean we can’t speak!)  And both that and autism can be prohibitively expensive to diagnose.  There is no medication for NVLD and research, I’m told, has stalled.  Treatments can be expensive as well, and since it isn’t in the DSM, it’s not covered by the Individuals with Disabilities Education Act.

I’m currently going through depression from a combination of 1) PTSD after many years of divisive politics, leading to increasing withdrawal from social situations; and 2) finding out I’ve been blocked online by somebody I considered a friend.  This is not the first time I’ve been ghosted by someone without a disagreement, an argument, an explanation, or even a word.  I have no idea they even have a problem with me, and suddenly they’re gone.  And this person–the story I got through a third party turned out not to be true.  I only ghost people who are bullies or bigots, I’m not a bully, and do my best not to be a bigot.  So being ghosted by someone I never argue with–I don’t understand it at all.  One person I knew in real life ghosted me several times, the last time a few years ago.  I still have no idea why she ghosted me any of those times.

As for the online friend, the initial ghosting and blocking was a while ago.  I had sent an apology through that third party, since she had blocked me.  Then I found out the story I got wasn’t true, so I don’t even know why she blocked me the first time, or why she unblocked me but then blocked me again after I sent a friend request.  We had never argued or disagreed about anything!  I had stuck up for her and helped her!  I found out about the second block this past week, since it had been such a long time since I sent the request.  This drove me into a deep funk, where everything that ever went wrong for me socially began replaying in my mind.

Many years ago, I stopped going to SCA events because it felt like every time, somebody would start badmouthing my faith, when they weren’t telling me to talk more or to smile.  Nowadays, it seems like every time I go to a social event, including church, somebody starts ranting about trans kids, or liberals, or CRT, or people taking sensible COVID precautions, or being called racist (when they’ve just been spouting racist crap).  I wonder if this is what it was like for Southerners against slavery in the 1850s, Southerners against Jim Crow in the 1950s, friends of Jews in Nazi Germany….Did they find most people around them to be intolerable?  Did they feel like fake allies if they didn’t leave their support systems?  Were they afraid to speak out?  Did they leave their churches or best friends or families?

This is not the church I signed up for.  This is not what the social events used to be like.  It hurts to go to these places–trauma and PTSD–so I’ve started withdrawing because of it, just as I did with the SCA.  Withdrawing is also because it feels like I shouldn’t associate with people who do this.  But what about the people in your immediate family?  I’ve had to unfriend people on Facebook who I still see in real life at group events; that one’s especially tough.  You hope they don’t mention it.  And–just like post-SCA–it’s made me feel lonely and depressed.

When you have issues making friends, and these are your family/support system, you feel like you either have to stay with them or be alone.

Meanwhile you may lose sight of the good friends you still have who have stuck with you and are not fanatics, along with new friends who are kindred spirits.  You may forget that, for example, one of the people in that group which your husband separated from–thereby shrinking your own circle–was a child abuser who popped her kid’s mouth for using her own bad words and laughed about pulling his ears.  Or that friend who ghosted you without ever explaining why, if that’s how they treat you, then maybe you’re better off.

So I thought, “I’ve gotta go to the local autism center for help”–only to find out they won’t evaluate me because I’m 49 years old.  Their online resources are geared toward kids.

So I turned to the Net and found one place in Mequon which evaluates adults for both autism and NVLD–but according to my insurance company’s online tool, they appear to be out of network.  So I’d be stuck paying at least $2000 out of pocket.  Rough estimate given on the website for the Mequon center: $210/hour for 14 hours is almost $3,000.  Ow.  Really don’t need that charge on our credit card.  Found another place in Madison which evaluates adults and looks awesome (all the doctors are women)–but states right on their site that they’re not in network, so I’d be paying the entire cost myself.  The quote is $3,000-$3,500.  ARGH

Our insurer may pay for ABA (that torture treatment mentioned above) and other autism treatments, but won’t pay for neuropsych testing that’s not “medically necessary.”

So getting officially diagnosed may be completely out of reach for a lot of people.  We shouldn’t be bullied and disbelieved by ableists just because we can’t get a diagnosis.  We know our own brain better than anybody else does.

NVLD vs. Aspergers: Videos to explain

Richard and Tracy refused to believe in my NVLD, and it was the source of most of our problems (that and me recognizing her abuse).  But it is real, and the following video succinctly describes my childhood–and many of these problems have followed me into adulthood:

Another source of disagreement was Richard thinking that NVLD and Asperger’s are one and the same, so since I don’t act autistic, I must not have NVLD. But here the differences are clearly explained:

And this describes Asperger’s:

 

NVLD: I just don’t understand people

Sometimes I have to cut out advice columnists for a while, just as in the 90s I had to cut out talk shows (such as Montel), because they can be triggering.  (I had bad experiences in college which these talk shows occasionally reminded me of.)

However, this is almost impossible because my newspaper runs an advice column, and you can’t help but read it with the comics.  Because the advice column often has bad advice, I feel forced to go elsewhere–usually Carolyn Hax–for some sanity again.

So until newspapers stop running these things, or I stop reading newspapers, I guess I’ll keep getting triggered now and then.  Just as bullies and abusers in my life tried to tell me I deserved their abuse, I’ll read what seems to say, “You deserved to be abused!”

This is why I had to drop a forum back in 2008, because people who knew nothing about the situation made it sound like I deserved to be bullied and abused.

I’ll read somebody else’s letter in an advice column and the responses, and it feels like over again, somebody is telling me, “You deserved to be abused!”  Even though it’s somebody else, and usually the situation is very different, I get shaky and distressed, like it’s all happening to me all over again.

With NVLD (nonverbal learning disorder), which is sort of like Asperger’s (though not the same thing), I just don’t understand people.

I was reminded of this again last night while reading a recent Carolyn Hax column and the responses from readers:

I read the letter writer’s complaint at face value.  When she said it was “perfectly natural” to discuss work with a co-worker, I thought, yes, of course it is.

I could agree with her that the girlfriend seems possessive and insecure to get all upset over work conversations between her boyfriend and the letter writer.

So when Carolyn and even the many commenters, on Facebook and on the Washington Post page, started ripping into the letter writer, I was shocked.

I just plain don’t get it.  I get excluded from conversations ALL THE TIME.

Nobody does it on purpose; it’s just that I’m an introvert with NVLD, and most people are extroverts without NVLD.  So they’ll be going on and on about something I don’t know a thing about, or that bores me, or somebody else makes my comment before I have a chance to.

I don’t whine about it; I only notice because often somebody turns to me and says, “You’re so quiet!”  That annoys me.  If you want to include me in the conversation, ask me a question; don’t criticize me and make me feel like a freak.

It happens in cars, just like with the letter writer and her two friends.  The other two will be in the front seats and I’ll be in the back, which automatically excludes you from conversation.

They’ll chatter on and on and I can barely hear them; if I can hear them, either I have nothing to contribute, or nobody hears me when I do.

Richard and Tracy used to do this all the time, too, when they’d drive me someplace, and they’d be up front talking on and on about their right-wing politics or some other thing, and I’d be quiet in the back seat.

Or we’d be in my house or their house, and they’d start going on about things I wasn’t interested in, or politics I did not agree with, or people I didn’t know, or make comments I found appalling, so I’d just sit quietly and wait for the conversation to change.

(Which is why her complaints of feeling “snubbed” have always baffled me.  Nobody was snubbing anybody, and if it’s “snubbing” to talk about things she doesn’t know about, then she “snubbed” me all the time. 

(It was just the normal, natural progression of conversation, and if, when other people were around, I got a chance to talk to Richard about something I actually knew about and was interested in, it was so rare and wonderful that I was darn well going to take it.  Everybody else did it to me all the time in their house; it was my turn, dang it. 

(This is also why I preferred one-on-one conversations with him, because we had a rapport and interests that could keep us talking for hours, which is highly unusual for me except with a few people. 

(Because it is so unusual for me, I see it as a rare treat, a delicacy, the caviar of friendships and social interaction.  While extroverts apparently see it as Tuesday. 

(But unfortunately, Tracy had such strict control that it was hard to see him without her, except on occasion, so when we got together, I wanted some of that rapport again for 10 or 20 minutes.  The rest of the time, we usually all socialized together, playing a game or something.)

But back to the main point.  It happens when more than two people are sitting at a table and the others inevitably steer the conversation toward subjects I cannot contribute to, or maybe I could but I can’t get a word in edgewise before the topic changes.

Or they talk about something I have no interest in, or about people they know but I don’t.

That’s why I prefer one-to-one conversations, because I can finally get a word in edgewise and talk about things I can contribute to, by helping to steer the conversation, instead of other people doing it.

Or sometimes I prefer the larger conversations because I don’t know what to say, and this takes the pressure off me to contribute.

Especially if I make a friend who I can actually talk to easily, I like the chance to just sit and chat with this person.

Introverts are like this: We don’t do well in group conversations, and just end up watching and listening.  But one-to-one, we can do a lot better.  Well, can.  I don’t always.  Often with one person, I still just sit there not knowing what to say.

But sometimes “magic” happens that I can’t explain, and I can chat easily with this person, probably because of similar interests and temperaments.

As for getting excluded–I get excluded when sitting at a meal with a group of people.  Happened all through school.  My college friends would go on and on every day about choir or their sorority, neither of which I was in.

Happened in the SCA, especially if they went on and on about something like sewing or SCA stuff (I was a newbie) or some bit of medieval knowledge that I know nothing about.

Happens every time I go to a social event and people chatter about things I don’t know about.

Happens at church every week, especially since I go to a Greek church and the people my age often talk in Greek with their relatives and older friends.  If I go to the English-speaking table, they’re mostly 30 or 40 years older than me and I can’t relate to the conversation.

And you know what?  That’s just frickin’ LIFE. 

I know people don’t do it on purpose.  You just frickin’ deal with it and don’t tell people what they can or can’t talk about, unless it’s something harmful, like making fun of someone or bringing up topics that are painful to you.  That’s being controlling and self-centered. 

(Heck, the one time I asked Richard not to talk around me about some guys who sexually harassed me, he said no.)

I think that people generally expect you to fend for yourself in conversations.  If you don’t, you just sort of disappear.

The only thing that annoys me is when people turn to me and complain that I’m so QUIET.

So I’m baffled by the Carolyn Hax column, why people have so jumped on the letter writer and accused her of all sorts of horrible things for doing the SAME THING THAT ALL THOSE PEOPLE WOULD DO TO ME WITHOUT THOUGHT IF WE WERE ALL SITTING AROUND A TABLE TOGETHER.

I just don’t understand people.  This is why I “hermit” so easily.  Why I “hermited” so much as a kid, but actually enjoyed going up into my bedroom when the house was full of relatives, or being alone all day at home during summer break.

Because people don’t make sense to me.  Oftentimes I had/have to deal with bullies, too.

Just when I think I have people figured out, they confuse me again.  Cats are easy: Pet them and give them a warm lap, and they’ll be devoted to you for life.

The researchers found that the brains of children with nonverbal learning disability responded differently to the social interactions than the brains of children with high functioning autism, or HFA, suggesting the neural pathways that underlie those behaviors may be different. —New light shed on learning disorders

UPDATE 2:02PM:

Going through the comments some more, I am greatly relieved to see at least two people who DO get it and don’t understand why the letter writer is being vilified.  They are introverts and social misfits to whom exclusion in conversation is perfectly normal and just something you tolerate.

One extrovert scolded that they may not want to participate in the conversation, but extroverts do, so it hurts them.

Er…Excuse me, introverts WANT to participate, same as extroverts.  We just get naturally shut out, which is frustrating. 

But we do not rage about this or treat them as if they did it deliberately, because everybody does this to us.  Our circles are small enough without chasing away all the extroverts we know.

One introvert, justaguy22, even sees the girlfriend as possibly abusive, possibly trying to control her boyfriend’s friendships and conversations, especially if she won’t let her BF see the LW without her, where they could talk shop!  That’s how I might see it, too–especially if the boyfriend uses the “we must pacify her” tone.

In my case, I got a lot of “Tracy’s jealous,” “She screams at the kids,” “She has to approve my friends,” “She’s emotionally abusive to me,” so seeing her reaction as controlling and possessive came from that.

I saw it myself when we were roommates for six weeks, and saw her become very hostile toward me as well, just out of nowhere.  I had no clue why.

And I was given a whole litany of things I did “wrong” around her that I could not even remember.

I said I needed help, such as her using words so I’d know when she wanted to converse with me, because I could not recognize it.

But no changes or help came from their side to help me change on my side, so I was continuously in the dark.  She continued to be displeased with my behavior, but without telling me at the time what I had done, so I had no clue.

I did not monopolize the conversation when she was in the room, mostly letting them carry it; if he and I sat next to each other, I might chat with him for a while, but usually my husband was there for her to talk to, or she was on the computer or doing some other thing.

She did not start conversations with me.  She did not even try with me, but instead expected me to come up with conversation when I have trouble with this in the best of social situations.

Most of the time there was something else going on in the room, or she was talking to everyone or to somebody else or screaming at a kid, so I didn’t see it as a time for starting conversation with her.

She criticized everything I did.  She refused to accept that I was a shy, quiet introvert with probable NVLD, who had always been that way and always would be, that making conversation with her–especially with someone who bullied me and whom I had maybe just witnessed verbally abusing her husband, kids or somebody else–was practically impossible for me until she stopped the abuse and accepted me for who I was.

Feeling pressured actually closes my throat and cuts off my thoughts.

Even then, I needed to be accepted as a quiet person who will not say much most of the time, even among my best friends.

I tried to explain all of this to Richard, hoping that he would explain it to her and they would help make it easier for me to relax around her.  But nothing ever changed, while I got blamed for everything and continuously punished for not being extroverted.

Also, after we broke things off with her, I had symptoms similar to PTSD.  As I wrote in one of my webpages on the situation, I was afraid to make new friends, constantly felt on-edge, like people were judging me harshly for being quiet.

It was always a huge relief to be among people who did not even mention my quietness, did not call me horrible for it, did not keep their husbands from being friends with me for it.

Reading this column was like, after all that, people were saying to me, “You deserved the abuse!  You deserved PTSD!  You deserve to be lonely and sad!”

I don’t know, maybe it’s just that the Carolyn Hax column is an entirely different situation from mine, and far simpler than what I dealt with, so the letter writer’s actions get a different response from the public.

I know that my husband–who is allowed to disagree with me and give the other person’s side–saw Tracy as controlling, too.

Maybe this letter writer is monopolizing the conversation, while I generally sit quiet in a corner.

I’m not sure it’s so hard to talk about something other than work, but maybe it’s the only thing she can think of at the time.  We don’t really know from one letter what all’s going on, and every letter that gets written to an advice column can get completely misinterpreted.

It happens, as we discover when somebody writes in with the “rest of the story,” whether from the original writer or from somebody else.

I believe I will now edit the full story of Richard/Tracy some more.  Apparently readers need to be more educated on introversion and NVLD, and told up front that I did try to do what I could to not “snub” her but I’m a timid person who was very intimidated by her aggressive manner.

Otherwise, people will just assume you are well-versed in social rules, an extrovert, can read subtle cues, etc. etc., and judge you unfairly.

One of the commenters on the advice column, who is used to being around geeks, complained about this, because of how people remarked on the letter writer.

Someone may have suggested Asperger’s; if she honestly cannot think of anything else to talk about, that is a possibility.  Aspies can easily fall into talking about their obsession even when you’ve already told them not to, but it’s not meant to hurt you.

Maybe I should incorporate this post into the introduction.  This is what people all over are dealing with in social situations, not just me.  All we ask for is understanding instead of vilification and writing us off.

 

More Evidence of NVLD….

Just now, I was looking through my family genealogy book, put together by my aunt, so I could put my grandma’s obituary in it.  (RIP as of Thursday.)  On the way to find her page, I found mine–and discovered that my aunt had included my worst possible high school picture!

It couldn’t have been the pretty freshman year one, with my hair pulled back and curled, or the senior picture.  No, it was THAT one, with shaggy hippie hair, where I looked like I was about to kill somebody.

(Fortunately, a very pretty picture of me with my little family in 2004 was also included, so I’m not immortalized in this book as the ugly duckling of the family.)

And yet I seem to recall, when I took THAT picture, thinking it looked like a smile.  Or at the very worst, a neutral expression.  Certainly no anger, or anything at all negative.

I know I tried to smile for it, because I always would smile for my school pictures.  Yet in my teen years, those smiles seemed to vanish in the finished product.

Also, for many years I felt my yearbook picture for senior year, which I myself chose out of several options, had a playful smile that revealed my personality.  Now, it looks more like a grimace.

What the—?  How could my impression of my own expressions change so much over 20 years?

To me, this is yet more evidence that I have NVLD.  That it has improved over the years, that I’ve gotten much better at “reading” people and their expressions, but that I had an awful time reading body language while growing up.  (See here.)

One day I might get it professionally diagnosed, if I find myself with a few thousand extra bucks (not likely).

But as I read over old diaries and revise my college memoirs for this blog, I find all sorts of evidence I had forgotten, things I struggled with in the first half of my life which are no longer big issues.  I have learned to deal with them over the years, learned to go with the flow more often, gotten better socially.  I’m not sure a professional diagnosis is still needed.  But I sure could have used one as a kid.

I think I was tested for something in elementary school, but I’m not sure what, or what the results were.

NVLD was identified but not widely known in those days, and I was good at reading and spelling, so my teacher’s solution to my social, math and handwriting problems was to scold and scold and scold.

Didn’t work; it just made me feel more freakish, because I had no clue why I couldn’t live up to her expectations, or how to change to please her.

I just knew that whatever I did was wrong, that my handwriting looked awful no matter how hard I practiced, that my middle school teachers found my work disorganized, hard to read and not according to directions, and that 8th grade math made no sense to me.

This was certainly not for lack of trying, or for deliberately defying directions.  I remember puzzling through study periods, wondering why I couldn’t get my math problems to match the answers in the back of the book.

Today’s kids have it easier because they can get diagnosed early with NVLD or Asperger’s.  This did not exist back then.  There is hope for them; they don’t have to learn the hard way, like I did, and struggle through life until they start to get it right.

I was good at algebra and geometry, but still can’t figure out how to calculate my credit card’s interest rate fees (8th grade math).  I became a clerk, then a stay-at-home mother, because I can do that well.  I can also write; at least, that’s what I’m told.  🙂

Another thing I found in the family book: a eulogy of my paternal grandfather.  He’s described as quiet and hard to get to know, but friendly and full of character.  Not quarrelsome, but won’t put up with getting pushed around, either.  Whether through genetics or other means, I see this is a family trait, because I’m the same way.  🙂

The encouraging news from Murphy’s book is that, with the right support and interventions, people with NLD cope much better as they get older….

“It can be devastating,” Lewis says, “if no one in their world is knowledgeable about NLD.”

That is all too often the case, given how frequently it goes undiagnosed. “The reason it’s very hard to get a diagnosis is that it usually exists in conjunction with other disorders,” says Sandra Newman, a learning consultant in the Hawthorne school district who diagnosed J.C. when she was in private practice in Fair Lawn in 2001.

As is the case with autism spectrum disorders, NLD is marked by deficits in social awareness or judgment. As a child who has not had appropriate interventions moves toward adulthood and expectations increase, social misperceptions and blunders occur more frequently and are more deeply felt…..

“Mike and I will be talking,” Wolin says of his stepson, “and I’ll say it’s 4 o’clock, and he’ll say, ‘No, it’s 4:03.’ So often the drive for precision in the detail distracts you from the larger issue — that we’re supposed to be somewhere at 4, and we’re late.” –Ellen Chase, Children, adults with non-verbal learning disorder develop strategies for using talents, navigating around deficits

That last paragraph reminds me of my ex Peter complaining that I would give the exact time, rather than saying “o’clock” or “quarter till” etc.  I couldn’t figure out what the fuss was about: He wanted the actual time, didn’t he?  I thought everybody did that!