Other Autist

[arfie]

My treatment will be to unmask. I am masking hardcore. Maybe I’ll get a (paid by myself) therapist to help me, maybe not. I spend WAY too much band with on masking., so it would help me massively to get my foggy brain cleared up, I believe. It’s just stress, probably?

enthusiastic bravo from me! ! !
whether i call ^it^ manic depressive, anxious, bipolar, retarded, ptsd, autistic, JPC (just plain crazy) or any of the other plethora of names for ^it^, i is what i is and i ain't what i ain't. letting my freak flag fly, by whatever name, clears up a whole heap of bandwidth i could be using elsewhere.

easy does it on the unmasking, though. it's kinda like ripping off a dirty, petrified bandage. yank too hard and you are likely to take some skin with it.

 

[alt]

wow, thanks for the long answer, Friday <3
I love long answers! :-)

- Because there is so much crossover between disorders that it’s often impossible to tell without a thorough DDX / differential diagnosis including full medical & neurological work up?

I don't seem to present much disorders at all, I think? Not on the outside, that is. I was down and out for 4 years due to PTSD, and after that I have worked full time.

My symptoms, that I have tried to get help with are these:
1. I have HUGE issues with my diet
2. I struggle with a very foggy brain, draining me a lot, particularly if I eat certain foods
3. when the brain fog gets super bad, I can hardly stand, and I start to lose language and lose vision
For 6 years I have tried to get help with these symptoms, and my doctor has sent me to all sort of experts mentioned in the OP.

- Because your therapist may not be a qualified diagnostician?

Nor is my GP, who thought I had bipolar disorder. I told him to reread the reports from 2 very competent psychologists and 1 psychiatrist, who independently screened me for disorders. The diagnoses I got from them were "PTSD no comorbidities", "PTSD, no comorbidities" and "PTSD with dissociations, no other comorbidities". Pretty uniform.

- Because, giftedness-spectrum is a well recognized thing (gifted, highly gifted, profoundly gifted) even if it’s not (yet?) classified as a disorder, it still comes along with symptoms typical of autism… yet with far less crossover than many other disorders… and vastly different treatments than which work with autism? (Asynchronous development, for example, is an extraordinarily malleable/treatable condition in people who are gifted; but the same effects/symptoms when due to autism, instead of asynchronous development, are bedrock/not malleable in the least).

oh, hmm... Maybe I should look into these other diagnoses more.... I was indeed called highly gifted as a kid... You wouldn't know where to start looking?

Why the hell am I talking about this?

because you aren't too stupid yourself either :-)

I would have DIED to go to your son's school as a kid. He is SO lucky.
I was miserable in school, haha. The teachers wanted to move me to 5th grade when I was 5, my parents obviously refused as it would have been horrible for a tiny girl to hang with the gigantic 5th graders. Oh, and

…Because no one in this school was neurotypical, neurodivergent was NORMAL…

I am so envious.

You may well be on the spectrum. I couldn’t even begin to guess (although it is extremely odd for someone on the spectrum to take a gut feeling of recognition over logical and methodical differential testing and analysis with repeatable results).

heh. I never thought I was an autist, really, despite being called autist many times. I didn't even think of it after my autistic boyfriend insisted I am autistic. My self diagnosis isn't as confident as it might seem, I just wanted someone to celebrate with, and I wouldn't tell anyone irl. Still, the idea doesn't come from nothing. I have read a few 100 pages of scientific papers and several hundred people's explanations of how their autism feels/works/ symptoms, and that's when I realized, dang... I mask, exactly the way autists do, and I stim and I have the same emotional labelling issues.

 

[alt]

This seems like you are celebrating you being right and everyoneelse wrong. We have all achieved this. It feels tremendous.

I celebrate how all pieces of my life start making sense:
* It makes sense why my mother told me I might be a psychopath when I was 7 years old, and trained me to "fake" empathy, since "everybody else is caring more". I knew I was no psychopath, I didn't understand why she thought so. It hurt. BADLY.
* it makes sense why my siblings constantly mocked me for being weird
* it makes sense why I looked like a black hole (Wednesday Addams) in all my photos until the age of 20.
* It makes sense why I felt so socially tortured in school. All these people I wanted to hide from, because they were asking me highly personal questions I didn't know why they wanted to know the answer to, like "who are your parents? do you have siblings? where do you live?" Why did they want to know?
* It makes sense why I felt so unable to explain to people what I was feeling, and why I felt so bad when people told me what they assumed I felt, when it was always way off. And why I got so frustrated with it, to the point of isolating, not even trying to explain myself anymore.
* It makes sense why I have the symptoms I have, in particular the foggy brain, since that is an autism trait, and often gets better if one manages to drop the autistic mask - it at least partly comes from stress, I think? It takes a LOT OF energy to mask
* It makes sense why I am so stressed about social situations to the point of spending 50% of my energy while speaking on trying to understand what I am expected to say and what I'm expected to look like (smile, look sad, etc) - masking
* It makes sense why my boss in my first job had to give me an paper with sentences to say in the beginning of meetings to be better at social interaction ("nice to see you again, how are your kids?" "did you travel far to get here today?" "was it a pleasant journey?")
* and it makes sense why I didn't even understand why they wanted me to waste time on such talks when I could work...

Most of all, the 3 top mental processes I have tried to discuss with my therapist as "different from others" make sense, but that would take too much time to explain.

It just makes sense, and that is a really good feeling, cause I have tried getting help SO many times, without anyone ever telling me anything that made any sense, nor eating disorders, bipolar, chronic fatigue, psychopath or hypochondriac or any of the rest I have heard. I like when things line up perfectly.

 

[Weemie]

You may tick every published symptom and still not have it.

I was literally diagnosed with autism and thought I had it for years and years. I don't, I have RAD and ADHD.

The overlaps are absolutely astonishing. I didn't understand the difference for years and wasn't aware I'd been diagnosed as RAD as well at age 14. I have always related with autistic people, learned the 'lingo' and just went thru life like that. I always knew there was something "else" wrong with me. (My most significant RAD symptoms differ from autism immensely, I have always lacked affective empathy - not entirely, mine is just different).

But I figured that it was an undiagnosed personality disorder, that my autism just involves affective empathy as well, or that I might well be a genuine psychopath (RAD + ADHD combo really presents a ton of overlaps there as well, though my "online PCL-R" -- not a real test, but it can give some indications -- came back within the normal range of someone who has committed criminal offenses at 22).

I was around the same age when I got diagnosed with NVLD (now just folded into ASD). You may think you know with 100% certainty that the issue is autism but these symptoms have enormous overlaps with other neurobehavioral and developmental issues. I thought I was for sure autistic but speaking to me over a long period of time it actually becomes very clear that it's not autism at all. My social skills are actually extremely well-developed.

RAD even has problems with sensory processing! So does ADHD to a lesser extent. You may actually wind up with an autism diagnosis and it still be wrong, because the nuances and differences in these type of disorders is just not well understood even by actual specialists. A person who studies autism for 40 years may still encounter me and not realize I'm a zebra instead of a horse and go "yup, autism." Medicine is an art more than a science sometimes.

Not suggesting this has anything to do with the OP at all since you're infinitely more likely to be autistic than to have an attachment disorder, but just wanted to point out that sometimes you can have the diagnosis and the symptoms and it still isn't autism. Either way, I still describe myself as neurodivergent, and I still have more autistic and ADHD friends than NTs. The fact that I have a verbal IQ of 170 also presents its own issues.

All of that combined together created the perfect storm of someone who "clearly" is autistic and yet... nope.

 

[oops!]

Push not pull.

Everything about this rings to "me" push away and not pull in.

 

[alt]

Take everything you know to a pro. Please.

But WHY? WHY do so many of you say I need a diagnosis? It makes no sense to me? I don't need a diagnosis of autism for ANYTHING. I can only think of bad outcomes of getting that diagnosis.... I don't think I want to tell my GP or any medical professional what I think I know. I won't ever tell a soul, as I might get discriminated on, deliberately or just due to biases. I definitely wouldn't want people I work with to know. I do not want my family to know. I wouldn't want friends to know. So... I really wonder why people here seem to say I should go get a diagnosis??? It makes no sense.

Unlike with the PTSD, where I desperately needed professional help, I have lived a whole life with whatever autism I have, and it thus probably will never go away. What on EARTH would a professional diagnosis help for? I'm in my 40ies....

enthusiastic bravo from me! ! !
whether i call ^it^ manic depressive, anxious, bipolar, retarded, ptsd, autistic, JPC (just plain crazy) or any of the other plethora of names for ^it^, i is what i is and i ain't what i ain't. letting my freak flag fly, by whatever name, clears up a whole heap of bandwidth i could be using elsewhere.

easy does it on the unmasking, though. it's kinda like ripping off a dirty, petrified bandage. yank too hard and you are likely to take some skin with it.

lol. YAY!

You may actually wind up with an autism diagnosis and it still be wrong, because the nuances and differences in these type of disorders is just not well understood even by actual specialists. A person who studies autism for 40 years may still encounter me and not realize I'm a zebra instead of a horse and go "yup, autism." Medicine is an art more than a science sometimes.

THIS.
THIS is why I don't care to get a diagnosis. They make mistakes, and have with me. For example, how on earth could my GP even consider bipolar, it was ridiculous, especially given that 3 professional therapists had examined me for months (not minutes like the GP) and never ever even considered bipolar. I have not had much depression in my life, and I wasn't even depressed during my 4 years of sitting staring into a wall totally dissociated while smoking after the PTSD-incident. So HOW did he even think of bipolar. I asked him, and he said "because I didn't make eye contact, and thus came off as lying about my foggy brain symptoms and my food sensitivities".

I think I can do better than this GP.

 

[Sideways]

So HOW did he even think of bipolar.

A couple of weeks ago, you described symptoms consistent with very low mood inthis thread. You’ve returned with a sudden onset of brilliance and personal insight:

a full on autist with an IQ of +/-180, who masks so well I pass as social and normal.

That’s consistent with an elevated mood (irrespective of whether or not you are also autistic), particularly given, by your own account, you’ve struggled to be accepted as ‘socially normal’ for most of your life.

At risk of being told I’m an asshole for having an opinion, your GP wondering about bipolar makes a lot of sense, which is compounded by the symptoms and potential eating disorder you’ve described, and would be worth investigating further if you haven’t already. So this:

But if you have a pre-existing Bipolar diagnosis? It’s time to get back to your doc to get your meds sorted out.

came from a person with some personal knowledge of the scale of destruction that unmedicated bipolar mood disorder can have, in the hopes that if that’s at play, it can be avoided with very little effort - a simple med-tweak. There’s a lot of red flags in your posts for a mood disorder.

So I straight-up suggested that if you’re already on meds for bipolar, it’s worth getting them checked. I didn’t assume that you’d ignored your GPs suggestion you might have bipolar mood disorder - it didn’t occur to me that you’d ignore something like that.

If you can contain your outrage and arrogance for a moment, bipolar mood disorder, unlike ptsd, can be very successfully treated with medication. But the medication levels need to be monitored and tweaked at intervals for the treatment to work. It’s most often someone else noticing breakthrough symptoms that triggers getting medication back on track.

Maybe I misunderstood the intent?

Yeah. You did. By a mile. You’re on mental health forum and flagged (yourself) that you may have bipolar, so the suggestion that if you have bipolar, it’s time to get your meds checked, is not only normal and compassionate in this context, it could potentially help a person avoid going through a completely unnecessary and destructive mood swing.

I apologize, but to me that looked like an asshole talking. I know bullies, and you look like one.

That’s not an apology. It’s an insult. Directed at a person who was offering advice from a space of compassionate concern and personal experience. Directed at a person who, like you, has suffered a long history of traumatic abuse.

You weren’t worth the emotional energy that I invested in replying to your post. Every time I get abused by a member for offering a compassionate response, makes me that much less likely to stick my neck out to do it again for the next person.

 

[whiteraven]

WHY do so many of you say I need a diagnosis?

Because maybe it isn't autism, and maybe it is something you can be treated for that will help. Even if it is autism, maybe someone who has worked in a professional/expert capacity can share things they have learned--both in their studies and from other clients--that might help with some of your symptoms (every one of which, incidentally, I've had and I do not have autism).

Unlike with the PTSD, where I desperately needed professional help, I have lived a whole life with whatever autism I have, and it thus probably will never go away

But what if--just hear me out here-what if it isn't autism? Or, what if there is someone who might actually know more than you do about autism that can share things with you that might help?

They make mistakes, and have with me.

Oh, I totally get this! I lack trust in anyone claiming to be a "professional." I have more trauma from professionals than I do from my childhood. But I'm still gonna go to a cardiologist for issues that *could* be my heart instead of rejoicing that I diagnosed myself with something else by reading scientific articles and talked with others who had similar issues. I'm going to do all of that, BUT I'm also going to go to the doctor and present my symptoms and my findings.

If I don't, I run the risk at some point of dropping dead from a heart attack.

I think I can do better than this GP.

This statement alone points to issues beyond what one person can deal with. Oh, I get it. I self-diagnosed a condition I ended up needing brain surgery for because no one would listen to me. But I took my findings to a doctor that finally did hear me and did further testing. We know ourselves the best, but we DON'T have the training or experience with clients/patients to always make the appropriate changes that will improve our health.

 

[Weemie]

THIS is why I don't care to get a diagnosis. They make mistakes, and have with me.

I don't have much trust in the medical profession but obtaining an assessment by someone who specializes in these issues and getting their opinion is an essential part of figuring out the puzzle. I have met a ton of shitty clinicians who have diagnosed me with everything from bipolar to borderline to autistic to whatever else. The trick is to find someone who you respect and who can take it all in and produce results that are explainable to you.

Someone who will actually sit down and listen to you, to your findings, to your history, who is willing to do a real assessment and not just brush you off. Having an in depth assessment conducted over hours and days by someone who actually knows you and interacts with you on a deeper level and understands ur history and environmental factors at play etc? A tremendous validation. And the ability to know with certainty that's what the issue is. There's no question and here is exactly why and here is how all these other symptoms actually overlap. This is the most difficult part of the puzzle - it took me 16 years to find my current therapist after WJ.

Someone who was willing to listen to me, who was willing to accept that I come at this with a great deal of self-insight and psychological education already, and who was willing to speak to me respectfully instead of condescendingly brushing me off and ignoring me and getting into word games and circular logic games that only increased my resistance and my combativeness. Someone who was willing to look at all the data and research I had compiled for what I believed the most effective treatment would be, say, "let's try it," and have that actually work? Hell, yeah. But if it hadn't worked? All right, I was wrong. Let's try something else, what's your suggestion?

I had that with the therapist who diagnosed me with RAD (WJ) and that ended up being a footnote that got buried with my other assessment information in my mom's closet. The autism diagnosis with the social issues I had and how deeply I connected to and related to autistic stuff, (and honestly how little data there is on RAD and how most of what I understand about it has been thru self-analysis and analyzing other folks with it and studying attachment and development on my own and having these talks with my psychologist - it's just plain shittier to have this disorder because there is so little information on it. Contrasted with autism where there is millions of articles on it!)

Just seemed to fit even though I understood deep down that there was something else at play. Having my current psychologist who specializes in forensics break down exactly why I actually truly don't have autism and should no longer use that label was very helpful. But much like you, I've met plenty of shitty therapists and clinicians who I just didn't respect enough to take their word for it (none who said I had RAD over autism but for example I have had plenty who don't know what ODD/RAD/ADHD are and just assume I'm borderline because I'm a combative AFAB person).

Ultimately it's all about what you're comfortable with but I'd take care not to describe yourself as autistic without qualifiers. Self-diagnosis is a misnomer - diagnosis itself must be done by another, even doctors get diagnosed by their peers, not by themselves. For example I describe myself as "ASPD-adjacent" because I do not have a formal diagnosis and never will, but my therapist agrees that I have definitely met the diagnostic criteria at least once in my past.

Sometimes it truly is a matter of "It's not rocket science" when it comes to knowing what your issues are - you can be reasonably certain and just go thru life like that! You can find treatment and therapy to address what you think your issues are as long as your clinicians are willing to do so without formal diagnosis or you can even learn it all on your own. That's entirely your prerogative. It's just also important to understand the limitations of refusing a genuine assessment.

Spoiler: Me me meee

One other thing I'll mention is that learning to unmask takes time! Most people who know me personally (and I've been a member of this forum for about eight years, give or take, and I was around when we had live chat as well, heh) do not believe that I lack empathy. (I am also a very self-centered person, which I apologize for - it truly isn't intentional, I just have a very egocentric view of the world, much like a child. But that's why most of this has just been about MEEE.)

This isn't because they're invalidating me, it's because my mask has been welded to my noggin since I was 17. I would read articles online about how doctors approach bereavement and bedside manner in order to replicate sympathy efficiently. I don't want to say it was a lie, because my motivations for doing this were genuine - I wanted to be well-liked, I wanted to make people feel good and not bad, and I did not want to come across as callous and insensitive. (This is why I say my empathy isn't absent, it's just different - I wouldn't have these prosocial desires if I completely lacked all affective empathy).

Learning to present myself as I am, which is relatively neutral, limited emotional expression, etc, has taken time. It's so ingrained in me to rely on these masking behaviors that I often do them without thinking. You will most likely run into these issues as well, and you may encounter those who do not understand why your behaviors are suddenly changing. For me, the desire to unmask came with the realization that as long as I am not harming anyone, there is nothing wrong with my natural affect. It may make people uncomfortable to encounter a dude speaking in a monotone with no facial expressions, but that isn't actually hurting them - it's OK for me to be as I am.

And likewise is true for you as well. Our society tells us we should all be one way, when really, tolerance of a great divergence of natural behaviors should be more normalized. Provided that you are not hurting and abusing other people, insulting them, etc, how you really "are" is A-OK.

 

[Charbella]

You have a high IQ I’m assuming diagnosed by someone? How is it that the person didn’t flag you as autistic then? Especially as you say you aren’t mild.

You’ve seen a GP who also didn’t suggest it?

You’ve seen a therapist it appears for 4 years and they didn’t suggest you have it?

You’ve seen psychologists the very people who screen for autism and they also didn’t say you have it?

Most if not all of the things you list as being childhood issues you’re attributing to autism are also associated with having an IQ of 180. Most brainiacs are considered weird by their peers and parents who don’t understand and nurture one with that high of an IQ which I’m going to go with yours clearly did not as you would be telling us about graduating high school at 12 if they had.

It doesn’t take much for a diagnosis of autism or even on the spectrum at this point. Im just saying this as someone who has had a lot of people around them diagnosed with it and then it’s been found to be untrue. You‘ve seen: GP, Neurologist, therapist, and psychologists. All people capable of diagnosing the condition and not one has mentioned it? You’re in your 40’s which means I assume you’ve been to multiple physicians in your life and if your parents thought you were a psychopath I assume your teachers would’ve noticed something and yet in your whole life no professional has even suggested it but has suggested multiple other diagnosis that do seem to fit your cluster of symptoms.

So I’ll echo what others have said. Get a proper diagnosis so that you might deal with your issues in the most productive way possible. Unmasking will not allow your brain fog that is causing you to be unable to move to clear. It won’t change your ability to eat things. Masking is something that most PTSD people do so we can function in the real world, this masking causes none of the symptoms you’ve listed.

 

[Movingforward10]

But WHY? WHY do so many of you say I need a diagnosis? It makes no sense to me? I don't need a diagnosis of autism for ANYTHING. I can only think of bad outcomes of getting that diagnosis.... I don't think I want to tell my GP or any medical professional what I think I know. I won't ever tell a soul, as I might get discriminated

If you don’t feel you need a diagnosis then why diagnose yourself? I don’t feel I need a diagnosis and I haven’t diagnosed myself, I believe I have cptsd symptoms but I never say I have it. Because I know I can’t diagnose myself.
I wonder what is making you feel so strongly about this? Yet so strongly not to get it confirmed? sounds like you could afford to pay for someone you picked and trusted to assess you.
if it helps to put a framework around you to help you understand yourself, I get that as a possibility. But to be so sure, that is the issue everything is highlighting here as a worry.

 

[alt]

A couple of weeks ago, you described symptoms consistent with very low mood inthis thread. You’ve returned with a sudden onset of brilliance and personal insight:

OK.... I decided to take you seriously.

Please ponder these questions (you don't have to answer, I don't want this to become a meaningless back and forth, I just want you to think it through for yourself)
1. Are you a doctor?
2. Do you know me well enough to diagnose me?
3. Do you think I should take your post seriously in any way?
4. Do you think I know myself better than you or do you know me better?
5. Do you think that you telling me I could be bipolar is really to be nice with me? Or to advise me?
6. Do you think you might have written the previous post just to put me down a bit?
7. If yes to 6, what would you call such a person?
8. Would you talk this way to me if you thought I was a man? Or are you belittling me and thinking I must be bipolar due to my gender?
9. Do you think you know better than 2 psychologists and 1 psychiatrist who screened me for bipolar, over months, and who both say I do not have it?
10. Could there be other reasons for you perceiving a change, than that I changed?

At risk of being told I’m an asshole for having an opinion, your GP wondering about bipolar makes a lot of sense, which is compounded by the symptoms and potential eating disorder you’ve described, and would be worth investigating further if you haven’t already. So this:

Ouf... If you want to know, I got a message from the GP after he blurted the bipolar diagnosis, where he said he was sorry for it, as he should have read the psychology reports that ruled bipolar out before suggesting it. He said that doesn't know how to help me.

So I straight-up suggested that if you’re already on meds for bipolar, it’s worth getting them checked. I didn’t assume that you’d ignored your GPs suggestion you might have bipolar mood disorder - it didn’t occur to me that you’d ignore something like that.

No, ofc I'm not on meds. I also told in the opening post I am not bipolar, so why would he put me on meds? I don't ignore medical advice. The GP admits he is at a loss, as they cannot find the reason for my brain fog. If you look closely, you'll see that I also created a post a few days ago, where I asked if I should check for TBI and if that could be a reason for my brain fog. The brain fog is not a mood, it is brain fog, and it drains me very, very badly. I have it all the time, some days full on, and I feel miserable to the point of having to lie down a lot. Some days less. Yesterday was a better day than today.
So no, for the record, I do not have a bipolar diagnosis, nor am I on any meds.

You don't have all the info, so be careful to try and argue against the person knowing all the facts the way you do. it comes off ass bullying, to me. As if you won't listen to me and just say your own version of things, based on words you read, thinking you know the full meaning of them. You don't.

Btw, it doesn't affect me. I don't feel bad about your words. But I stand up to those I think are bullies. I thought for a while you were one.

Alas, I only knew you through a few posts, and I see now that I probably misread you. just like you misread my posts.

If you can contain your outrage and arrogance for a moment, bipolar mood disorder, unlike ptsd, can be very successfully treated with medication. But the medication levels need to be monitored and tweaked at intervals for the treatment to work. It’s most often someone else noticing breakthrough symptoms that triggers getting medication back on track.

Thanks for the mansplaining.... ;-p

My mother is the bipolar expert (psychiatry) of this region, and she talked to me about bipolar since I was a child, not to mention I met a lot of her patients. So, I do know what bipolar is, very well. I really don't think I have it myself, though, but I'll have an open mind.

That’s not an apology. It’s an insult. Directed at a person who was offering advice from a space of compassionate concern and personal experience. Directed at a person who, like you, has suffered a long history of traumatic abuse.

Oh! If you meant it as advice, then I did not read you the right way AT ALL So that makes two of us, misreading the other. I'm sorry if you felt hurt by my words, I did not intent for that. I intended to expose what I thought was a bully or a troll. I don't accept bullies anymore, I expose them. For the record, I did not feel hurt by your words, I just thought you were trying to bully me. I read your words as slurs, meant to put me down, meant to make you look superior, and I felt like it was done deliberately to a person saying she is fed up with being misdiagnosed. If it looks like a bully, quacks like a bully..

I realize I was wrong, and I am sorry. I believe you this time around, and I hope this apology comes across to you as genuine, as it is.

You weren’t worth the emotional energy that I invested in replying to your post. Every time I get abused by a member for offering a compassionate response, makes me that much less likely to stick my neck out to do it again for the next person.

Let's start over. :-)