NVLD

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.

This is me–This is my life–NVLD

I’m listening to this podcast: Is it You, Me, or NVLD? by Linda Karanzalis, MS, BCCS.

I’ve read a lot about NVLD over the past 20 years, but just hearing it all in one place is tremendously validating, because–as the person doing the podcast says–it’s ignored by the DSM and doesn’t get proper research or help for people suffering from NVLD.  She also has NVLD herself, and knows from personal experience what it’s really like, not the detached view of a researcher.

Because it’s not in the DSM, despite being different from other “official” disabilities like autism or dyslexia, people don’t recognize it or excuse behaviors.  How many of you have heard of autism?  How many of you have heard of NVLD?

The best way I can describe it is “It’s sort of like autism” because people know what that is.  But that brings up images that don’t fit what we’re dealing with.  We’re not, for example, the kid so overwhelmed by sensory input that he has to sit and rock.  Because we don’t have obvious problems, people don’t understand, and we get terribly misjudged and rejected continuously.

I’m now going to vent a bit, including bad language.  People with NVLD, or who know somebody with it, might find this part validating.  People who just wonder what NVLD is, may want to skip this part.  If not, be warned.

But when you read my blog again, Richard and Tracy, because I know you will, it’s also for you.  And for anybody else who’s ever bullied me over the years.  No, I wasn’t making any of it up, I wasn’t able to “change” to suit you, so FUCK YOU Richard and Tracy.

Everything I’m hearing in that podcast is me.  For example (and all these examples are taken from ones given by the podcaster) :

Yes, I identify with a lot of the same challenges faced by people with autism/Asperger’s, but I’m not content to just be by myself all the time.  I do engage socially but keep getting rejected ALL MY FRICKIN’ LIFE.

Yes, people say bad things about me when none of them are true.

Yes, people treat me like I’m just being defiant, or rude, or mean, or get upset when I ask questions, or I get upset because somebody said something but later say they didn’t say that or mean that.

Yes, I have trouble with someone getting upset with me because my thinking tends to be literal.

To this day I feel weird watching a pot because I know it won’t boil until I look away.

Yes, people have tried to manipulate me, and I tend to stay in relationships (of any type) for too long because of either needing help (since I have these issues that make me dependent), or the desperate need by NVLDers for friendships.

I’m not sure, but wonder if certain times in my life where people got mad at me were because I missed that their words did not match up with their nonverbal cues.

FUCK YOU Shawn, who said all sorts of horrible things about me and my character after seducing me, and refused to date me because I wasn’t extroverted.

Yes, I have trouble changing plans even when it’s for something fun, or at least I did when I was younger.  (I’m more flexible now.)  Boyfriends actually chided me for this.  One called me a party pooper.

FUCK YOU Phil’s flying monkey friend who scolded me for not being extroverted and participated in Phil’s attempts to isolate and control me.

So many people have treated me like a baby or I’m irresponsible because I’m afraid to drive.  But when I did drive, my fears were reinforced because my learning challenges caused all sorts of near-accidents and getting terribly lost and other problems.  The podcaster says that most kids with NVLD are scared to learn to drive, unlike their peers.  So FUCK YOU Phil, who endlessly bullied me because I wouldn’t drive, and refused to take me places, so I couldn’t go but still needed to.

Yes, I’ve been suicidal.

Yes, I still get bullied, still hear people laugh at me or make snide comments.  Some I can’t ditch, some I’ve distanced myself from or dropped, some are people in situations where you can’t really do much about it.

Yes, I have trauma from this, and PTSD from all the bullying I’ve gotten over the years.  Rejection Sensitivity Dysphoria sounds familiar, though I’m not sure it’s that extreme.  I can get very angry, and sometimes I express it and get punished, so other times I bottle it up and writing becomes my only outlet.  This is why I post things here, online.  It’s also why I occasionally use cuss words here online, because I never do that in real life speech.  It’s release but violates social rules.

Yes, COVID has been easier for me because I’m already used to only limited social contact.

Most of my teachers were great, but some of them talked down to me, called me babyish, said things like “You’re the only person who never makes noise when someone is talking to you,” said I was behaving wrong or didn’t put my hand up or participate enough or apply myself enough.  One put red marks all over my papers saying I was doing it wrong, even though not only did I have NVLD to deal with, but I was also trying to understand directions in French.

Then there was the supervisor who told me I had to be more sociable because people were “scared” of me.  I’m a kind, gentle person with strict rules on how to treat people, so this was ridiculous.  Executive functioning combined with a long drive and one shared bathroom left me with little time to socialize before work.  I got validated, however, when the owner of the company said people were socializing too much and were supposed to be there to work.

Yes, the podcaster says you can diagnose yourself, pointing to the fact that it is very expensive to get it professionally done and it isn’t officially recognized.  She sees that we’re not making ourselves into victims with the label (FUCK YOU again Richard), because she says it’s a relief to find this out.  It helps you move forward.

She says to get rid of “friends” who don’t support you or believe that you have NVLD, because they are toxic to you (once again, FUCK YOU Richard and Tracy).

Oh yeah, and on her website I see she got stomach ulcers from the stress of school.  So did I!

She described the difficulty in NVLDers finding and keeping friends.  This drives us, she says, to hold onto relationships that are bad for us.

This is also, by the way, one of the biggest reasons why I am so against people who say opposite-sex friendships for married people are VERBOTEN.  If I believed that, I’d have very few friends at all.  I don’t usually befriend males who are, like, captain of the soccer team or a model or anything like that.  They are the geeks, the nerds, the ones who go to the comic book stores at age 35.  They are ones who already understand what it’s like to be an outcast.  Or maybe they’re just an introvert, but that has its own social challenges in Western society.  They “get” me instead of making fun of me.  They’re happy that I “get” them.

And when that happens, when we have things in common and get along, I don’t care if you’re 15 or 20 years younger than I am (that age group is now pushing 30), or if you’re 10 years older than me, or if you’re male or female.  Friends are rare and must be valued no matter where they come from.  So I will fight you to the (non-literal) death if you tell me I have to give up my friend just because he happens to be a guy and I happen to be married.

So that’s how I identify with the traits and observations put forward in the podcast.  I recommend giving it a listen.

I found someone like me who records memories for future self

I was reading a blog on NVLD when I came across a comment by Shava Nerad which read, in part,

My episodic memory is pretty good, but spotty. I can remember things going back to my toddler years. I started trying to remember events of my life when I was about eight years old when I realized that most adults didn’t remember what it was like to be a child anymore, and had the foresight as a gifted kid to try to “record” my memories for my future self so this wouldn’t be my fate (it worked!). My idea of my unfathomably ancient future self, in my mind at the time, was me-at-forty, lol, and here I am at nearly 60, still quite easily remembering my internal states as a kid.

I did this, too: When I was maybe ten, I read the Little House books, assumed they were all based on memory (not knowing that Wilder did some fictionalizing), and wanted to be able to do the same thing when I got older.  So I asked my psychologist to hypnotize me to remember everything.  I also started writing down everything, in diaries and letters and journals, and then backing them up: typing them, copying them, saving them on computers, locking them in fireproof vaults.  As I got older, saving e-mails became a new way of remembering.  Nowadays, I do my saving electronically, which is much easier to find room for and access at will.

So just like Nerad, I can remember many things from as far back as age one because I was determined to remember them.  I wrote down many old memories into Word Perfect; there are many things I’ve forgotten which I remember by looking back through these journals.  They are valuable to me, no matter if anybody else cares about the things I write about.  Even if nobody reads much of the memoirs I’ve posted here on my website, they are there for me to re-read and search through whenever I want to remember something.

And yes, I remember vividly what it was like to be a kid, to be a teenager, even at the ripe old age of 47.  😉  So when I see somebody my age post a comment online like, “Back in MY day, we didn’t act up in class/disrespect our parents/act like today’s spoiled rotten kids/etc. etc.,” I can say, “Um, yes, you did.  You were just as bad.  Spanking didn’t stop you.”

Too bad I can’t post a reply to Nerad.  I mean, I could, but this person’s comment was posted two and a half years ago….

Chris Rock has NVLD

When I saw the article blurb on my browser, and they just said “learning disability”–rather than saying “dyslexia” or “autism” etc. — I just knew what kind of learning disability Chris Rock had been diagnosed with.  So I read it and sure enough:

The far bigger commitment has been therapy, however; seven hours a week, he says with unmistakable pride. His decision to seek meaningful help for the first time in his life was precipitated by a friend’s suggestion that he may have Asperger’s. It prompted a nine-hour battery of cognitive tests earlier this year, from which doctors diagnosed Rock with a condition called nonverbal learning disorder, or NVLD. As he’s come to understand it, he has tremendous difficulty with non-verbal signals — which doesn’t sound too drastic until, as he explains, you consider that some 80 percent of communication is nonverbal. “And all I understand are the words,” he says.

Rock often takes things too literally as a result and, like others with the condition, suffers from a kind of all-or-nothing thinking. “By the way, all of those things are really great for writing jokes — they’re just not great for one-on-one relationships,” he says. Until now, it’s made much of Rock’s life uncomfortable. “And I’d always just chalked it up to being famous. Any time someone would respond to me in a negative way, I’d think, ‘Whatever, they’re responding to something that has to do with who they think I am.’ Now, I’m realizing it was me. A lot of it was me.”

You can read it in “This Is the Best Part I’ve Ever Had”: Chris Rock Talks ‘Fargo,’ Aging and Why He’s Spending 7 Hours a Week in Therapy

 

Reblog: Sociopaths rule America — but there’s an easy way to identify them. | Lucky Otters Haven

As a person with NVLD (similar to Asperger’s in many ways), I have trouble reading body language, which left me vulnerable to a couple who I believe to both be narcissistic sociopaths (story here).

Because I was so vulnerable, I didn’t understand why my wonderful, sweet best friend would turn on me so suddenly and betray me (and, with his wife, begin stalking me later), leading to a long, drawn-out, painful process of healing and recovery.

Over the years, a part of me has held onto the hope that one day, he’ll repent and come to my husband and me, looking for forgiveness and renewed relationship.

This despite the fact that he strangled and asphyxiated one of his kids shortly after we broke off relations with him and his wife.  The little girl reported him to the police and he was convicted.

Now his wife, I knew early on that she was a danger, which is why I resisted her attempts to force me into a close friendship with her.  (Normally it’s easy for me to befriend the spouses of my friends.)  Over time I finally got a word for the danger: narcissistic sociopath.  One day, I even saw her sociopathic smile of glee when an enemy (who, by the way, used to be a friend) had done something terrible.

But him?  A sociopath?  The more I learned about narcissists, the more I could believe he was one, but I thought he was one of the lower-level narcissists, incredibly self-centered but not out to actually hurt anyone.

But it seems I was wrong.  When he choked his kid, the newspaper published his mug shot on its website.  There was no remorse in that face, just anger, even contempt.  A couple of years later, I got a disturbing e-mail from these people which said I “don’t have all the facts”–which made me wonder, What the heck kind of fact can excuse that you choked your kid in a fit of pique because she wasn’t cleaning up?

But that wasn’t all.  When his probation (PROBATION?  no jail time?  SERIOUSLY?) started, the state took more mug shots which it posted online on a website which publishes offender information.

Just as I did with the first mug shot, I studied the new mug shots, trying to identify the expression on his face, a difficult thing with NVLD.  I can get common expressions just fine, but the more subtle ones are harder to catch and understand.  I used websites on facial expression and was pretty sure it was contempt.  I also saw posts on sociopathic smiles, but when they’re just words or just a couple of pictures, it can be harder to be sure if that’s what you saw.

Then Lucky Otter published a blog post with both descriptions and lots of pictures of various forms of the sociopathic smile.  For example:

Jack Brown, MD, is a physician who is an expert in reading body language and facial expressions. He said there is a particular expression that sociopaths and malignant narcissists use much more frequently than normal people: what he calls the Elevated Central Forehead Contraction with a Partial (Insincere) Mouth Smile. It’s a closed mouth, fake smile with the eyebrows drawn together as if the person is frowning. It’s similar to a smirk, but not quite. The overall effect is mocking condescension and cruel contempt. Brown says this expression is used often by serial killers, mass murderers, hardened criminals, and by everyday bullies and other people who lack empathy.

Source: Sociopaths rule America — but there’s an easy way to identify them. | Lucky Otters Haven

I highly recommend reading the whole post, of course; this little snippet doesn’t do it justice.  Anyway, thanks to this post, I pulled out the mug shots again, this time showing one to Lucky Otter.

Her verdict?  Sociopath–complete with subtle smirk and dead eyes.

Dang, I was so fooled by this guy.  Even to this day, I’ll think back to things that happened and think he’s not so bad, deep down, and just needs to repent and things will be fine.  I’ll think he just needs to get out of the sociopathic control of his abusive wife, and the real Richard will come back out again.  Heck, he wanted to be a priest!

…Er, yeah.  He can’t be now, because of the choking incident.  Think of the bullet that the Orthodox Church dodged here.

Especially with this couple *still* stalking my blog all these years later (a bunch of times just in the past couple of weeks), and now with a new group of sociopathic/psychopathic/abusive trolls stalking me here and on Twitter, sometimes I wonder if I should just remove everything I ever wrote about this couple and other abuse stories as well.  You know, for protection against whatever these creeps might be contemplating.

But then I think, No, people NEED these stories.  Victims and potential victims NEED to know what narcissists/sociopaths/psychopaths/other abusers are capable of, so they can protect themselves from future abuse, and heal from the past.

And that means putting my own story on the Web, dirt and all, without trying to sanitize it like some people might.  Saying “I never did anything at all wrong when dealing with my abuser” will not help you or other victims learn how to protect themselves.  And there may be times where I don’t recognize what I did wrong, but other people will, and that can help them figure out what to do in their own situations.

And my ex-friends need to know that

  • I know what was really going on,
  • I reject their attempts to project their crap onto me and make me think I was behaving badly and needed punishment,
  • and I won’t be vulnerable to them again.

So yeah, I don’t post this stuff just to help myself feel better.  I also post it to help others, because this problem is rampant in today’s society.  And check out Lucky Otter’s post to help you spot these people before they rip out your heart.

Comments are turned off because this is a reblog–and because I’m still being watched by these people.