sleepie

Hi all. Anyone heard of this rare disorder? It usually goes undiagnosed and is not recognized, and there is no treatment. I obtained some papers years ago from my childhood that indicate very heavily that I have been living with this my entire life. I have kind of hit the hallmarks as an adult and very much so as a child. The social rejection, preference of books to people, expansive vocabulary as a kid, taught myself to read at an advanced level and tested very high and as considered gifted until I hit middle school and tanked. I cannot math to save my life. I get flustered, anxious and overwhelmed rather easily and I am not too great at problem solving. It's embarrassing. As an adult I have been told I am gullible, which after some thought and unfortunate experiences, is true- so I watch myself now. I have been easily lied to and manipulated in the past. Trying to watch for that too. I tend to crash and burn at jobs too. Anxiety has been an overwhelming theme of my life, to the point it has hurt me physically.

Ooops, forgot... the most significant feature, an enormous disparity between verbal an non verbal IQ, as indicated on childhood testing and in my teens.

Soberpotamus

Yes, all of the above. All of it. Except I was able to overcome my math struggles eventually. Lately, I've thought it must be Asperger's or high functioning ASD. I must've self-medicated by drinking, in fact, I know I did.

I've had to work with it. Be creative. I am a freelance writer, working online from home. I've been doing this since 2010. I've done some sales too, all from home.

Everyday life has been a struggle. Especially since getting sober. It's been a headspin for me.

I'm also bitter that it was unnoticed and overlooked my entire life because of my intelligence and performance in school. And I'm amazed I didn't know something was wrong. I majored in Psychology. So, double failure.

sleepie

I am trying to work the courage to try and get an official diagnosis. But I am scared because I had such traumatic experience as a kid with my parents dragging me to a dr who treated me like a lab rat and diagnosed me with Tourette's, which often brings nvld with it. I was put on a heavy drug that was considered experimental at the time, specifically because as my mother told me, my parents were ashamed to be seen with me. I also suffered a very abusive upbringing and so got that as well as being tossed into life with an unrecognized disorder that has affected me profoundly.

I don't know if you were bullied in school but I was absolutely tormented. Even by teachers. People just hated me. I am glad that bullying gets more notice these days and people are being called out on it.

It is an every day struggle in so many ways. Often people think I am on their level and I am always waiting in fear for the moment they realize I am not. It provides a lot of anxiety and fear of interaction with others. I feel like I am fooling people when they treat me like an equal, and don't dare trust anyone after being taken advantage of, lied to and preyed upon many times in my life. Any reading on nvld will tell you that unfortunately, we are very prone to this.

Soberpotamus

I was teased some, yes. By a specific group of boys mostly. I tossed it off as... well, they're idiots. But it still hurt. I guess I was more of a nonconformist/individualist in high school but still accepted by most. If that makes sense? I guess I played it off pretty well. It was assumed I was just odd or eccentric. So I tried to embrace that and just get the hell out of there and off to college. College was great. But I drank too much, still to deal with the stress, anxiety, and social aspect. But I was finally around peers, people more like me. Didn't feel so odd anymore.

I hear you about not trusting... yeah, I don't trust either.

I've spoken with a few people on the phone about evaluation/diagnosis. I'm not sure how to proceed. At the moment, I'm just trying to come to grips with it. It explains so much and it's allowing me to forgive, both myself and others. I don't feel so bad anymore. In retrospect, everything kind of makes sense now. And not sure a diagnosis is going to be beneficial, since I stand no chance of getting any sort of help, because no one seems to think it's a real issue for me. My family just thought I let them down and didn't follow through by getting a Masters or PhD. They don't take my fiction writing seriously, as something viable. And I've become a hermit over the years anyway. So it's not as if I need any approval from anyone anymore. My husband is on my side and that's all I need.

Are you sober? Have you been able to maintain your sobriety? It's the most important thing for me anyway.

If you think a diagnosis is going to help you, go for it. I am still waffling over whether to get it. It would bring me closure, but not much else.

sleepie

I am not drinking. I have only 24 days today is day 25. Unfortunately, college would be out of the question for me, I know I couldn't do it. I suspect I have ADD as well since it also goes very much with Tourette's. A diagnosis would actually do me well as far as no longer blaming myself for being the target of abuse by so many people over my lifetime. And maybe I wouldn't blame myself so much for being so bad at so many things others take for granted. I wish I could go to college, but that's just another thing most people can do that I cannot. I attended art school. I wasn't very good.

Anyway at least one noted author lives with this as well, Nalo Hopkinson. I read her book "Brown Girl in the Ring". She has a youtube video where she talks about nvld and add- it felt like she was describing me when I saw it, I cried. Also Pia Savage who has written many articles for Psychology Today online has it. I wrote to her but was ignored. I also wrote an LD organization, but was ignored again. Really feel like I'm on mars, or an island tossing out the messages in bottles, and just... nothing. There are no support groups for this either. So it's kind of just up to the individual to basically self diagnose, and then... hope for the best?

Soberpotamus

I went to AspiesCentral, it's a forum, and found many people I could relate to there. Have you tried those kinds of forums?

I will look up those authors you mentioned.

Don't completely rule out higher education. It might be possible, with some accommodation.

sleepie

Meh. I have kind of resolved to being self taught. I am not young anymore and I just don't do well under the usual teaching environment. Kind of has to be my way or no way.
https://www.youtube.com/watch?v=Yk7inZOfv7M

That's the link to nalo's video. hope you like it

Thanks for the tip on Aspiescentral. I understand there's a lot of debate about whether or not this is a form of autism.

I wonder, do you get driven mad by certain sounds and smells? Like a hundred times more than the average person? this has always been a problem for me and I just thought I was spazzy. But then I read sensory issues can happen with this disorder too.

Soberpotamus

Are you able to see it as a positive thing? We are gifted in some ways. I certainly wouldn't change that part of myself. I'm gifted verbally, musically, and have a tremendous memory capacity.

I just can't imagine not being this way, despite the downside.

sleepie

Well, no. I am not gifted in any way. My memory stinks too, I used to think it was a side effect of childhood abuse but I realize now it's just my defective brain. I was considered gifted as a kid but that all faded away.

Soberpotamus

It's crazy to think it's autism, yeah. I mean, who knows, it might be. But never would've guessed

Asperger's is removed from the latest DSM and it's now umbrella-ed under Autism Spectrum Disorder.

Soberpotamus

You'd probably benefit from seeing a therapist to deal with the emotional fallout. I've seen one off and on since age 19. But honestly, quitting drinking was so necessary for any sort of real healing to begin, I think.

sleepie

Dunno about that. I have been in and out of therapy, had bad experiences. The last one looked at my tests and deemed me "deficient". Now, as someone with a disorder that makes you extremely sensitive to language and the deeper meaning of words, I was very hurt. Although, I think that would have been hurtful to just about anyone. He absolutely refused to apologize or take it back and just kept referring to me as deficient. It triggered a big bout of drinking, and he's an addiction counselor... way to go. In the past therapists have said either cruel or dismissive things about the NVLD, so I am actually kind of coming to grips with the fact that I will just never be like others. In a way that is very frustrating because often people think I "seem" fine until they figure out I am off somehow. Have to figure out these uncharted waters for myself. At least now that I read of all the social symptoms I can kind of get by more. Big time boundaries in place, never had those before.

Soberpotamus

Yeah, I had to learn the hard way about boundaries, unfortunately. I've got some in place now

I'm sorry you had that experience with the therapists. That sounds somewhat unethical, in my opinion. And just wrong in many ways. Everyone is deficient in some way.

You aren't alone though. You don't have to go through it completely alone. I think you can find a much better therapist than the ones you've described. And check out that forum. Those people are pretty cool

sleepie

I read that about autism too. All these diagnoses and redefinitions can kind of mess with a person, I imagine. A rose is still a rose I guess.

Soberpotamus

Yep. We're still the same. No matter what label you're slapped with. You're still you.

sleepie

Thanks. It's been good to talk with you about it. I was so surprised I got such a quick response! I imagined this thread would sit here forever as most have never heard about this disorder. Did you have the big disparity in your verbal and non verbal scores too?

Soberpotamus

Good talking with you too I have been hoping someone like us would pop up on this forum

Yeah... I did have the disparity. I scored a 35 on the verbal section of the ACT, I think it was one point from a perfect score. Ten points lower on the math.

I was hyperlexic - reading around age 2 or 3, self-taught. I read constantly... scanning the environment, reading signs, billboards, license plates, etc. I have really good relative pitch and studied voice as well. Most people think I have perfect pitch but I don't. It's just really good relative pitch. Like, I can hear a song and fumble around and play it, and sing it in tune. I can tell when instruments are out of tune usually. I never get lost when traveling cause of the photo memory. I studied the night before exams and could get A's and such. Not always, but typically. I had to really study math. Geometry was easy cause it's visual. But alegra really threw me. I had to quit going to statistics class and learn straight from the book. I also had special accommodations for public speaking class in college.

sleepie

I was an obsessive reader as a kid too. Ruined my eyes. I always read at least four grade levels beyond where I was. I tested like a rockstar too, always in the 90th percentiles... it was a blow when I started screwing things up later. It's really a cruel joke to have such a great start and then life just turns around on you. Sometimes I think it would have been better to never have done well, because then I wouldn't have had the repeated crushing blow of failure and wondering why, after I'd been told I was gifted for years. They wanted me to skip a grade at one point.

Soberpotamus

I completely understand that let down. It feels cruel, yes.

zerothehero

Hello. I really appreciate this conversation because I know a girl who was diagnosed by her school as having a "learning disability" (pretty general) but parents also suspect asperger's or autism. The youtube video and descriptions above are her to a T.

I wonder about online schooling for this student and maybe for you, sleepie, if you have a specific major in mind. With such excellent language abilities it seems logical, anyway.

I remember once telling this girl that some people make a living reading books and then writing about them. She looked at me like that would be the coolest thing in the world. I'd like to learn more and try to help her and her family. School is not a happy place for her.