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Other Autist

THANK YOU SO MUCH for the long post @Weemie. I love reading about your experience, it is so interesting. It makes sense to me what you have gone through, and in so many ways your experiences are similar to mine. You even have a similar personality, I think. You aren't a flaky snowflake either. More like a tiger.
I am, too.

I really like people like you, @Weemie, easy to know, easy to like... but there is the problem....
Because where we differ, there is a HUGE problem....

... I know that if I start feeling attached to such people emotionally - as I will since that just happens if I interacting with anyone - I run the risk of getting extremely hurt, even be in danger, as they will not bond back...

I know all this, because of Voldemort... I knew him so deeply, and he was even a flaky snowflake version of a sociopath (or self-diagnosed psychopath). That means intensely manipulative, extremely secretive, playing the victim and generally making me walk the extra mile for him every day. He kept this game for month, while I was looking forward to getting my reward for doing so much for him, he was plotting how to rob me.
 
Just tossing this out there, have you considered Vertigo, or an inner/ middle ear issue? Or Diabetes (too low/ too high blood sugar can bring on those symptoms)? (As can a rare condition I'm not that familiar with, but a dr would be, where certain food are converted to alcohol in the gut.)
I think my GP considered all of these things, except for the alcohol in the gut condition, but I know of it, and don't think that is it, since that is a genetic issue, and I was fine with artificial sweeteners before.

Do you use substances, or herbal or OTC products?
Not really.
I smoke if I get triggered (a few times a year). Often a lot if it happens (chain smoking). But I don't smoke normally.
Do you think being awake 7 days is why the drs may have been considering (hypo)mania?

Hope you get to the root cause.
Nah, the 7 days awake was back in 2014, when I still didn't have any brain fog. They said it was normal with early onset of PTSD to not sleep, and they just took it as PTSD-related, and that is what it was too. I am not awake so much anymore. Bipolar wasn't considered then. That came on the table the last time I met my GP, as my GP cannot figure out what causes my brain fog. He had me visit all sort of experts without getting any closer to an answer for years now, so I think it is more of a desperate attempt at finding a cause.

I think they didn't even believe me back then at first, that I had been awake for so long, as they said I looked fine. I have heard from both my therapist and my GP that "I think you don't get the help you need, as you are much more ill than you look. You are resourceful, composed and reflected, and thus it is hard to grasp just how sick you feel on the inside, but I know you are sick. I wish I could get the experts to help you more, but they don't see that you are sick, I think."
 
Thanks for asking.

I often feel quite ok when I wake up in the morning, but as the day goes by, I often feel foggy. If I eat breakfast, the brain fog starts around 20 minutes after breakfast. If I don't eat breakfast, I've noticed it may go hours before it starts, normally when I eat lunch or when I start feeling extremely hungry.

if I work a lot, I get foggier. If I work out, it seems to get better, unless I work out too hard, then it gets worse.
If I get triggered, or fight someone, I get massively worse.

Aspartame, coffee, excess sugar, chocolate and alcohol can put me in bed for days. Thus my migraine diagnosis.
I react to most FODMAPs, but it seems I have grown more tolerant to milk products the past two years.

the brain fog problem came on very suddenly one day in 2017. Totally like flipping a switch. I just woke up one morning, still feeling rather normal, had breakfast and 20 minutes later I was stumbling over words, my vision got blurry and I felt faint, sick, dizzy and very scared, as I started walking into walls and otherwise look drunk to my employees. They laughed and asked if I was drunk. I didn't drink at all, so that wasn't it. I was really scared for a while until the doctors did a brain scan and told me I didn't have a tumor. I am no longer scared, and I push through the brain fog by not eating breakfast, eating oats for lunch (doesn't affect me too much) and then after work, I tend to lie still on the sofa with eyes closed to get rid of the brain fog creeping in on me.

Hmm... I think that covers it.

Edit:
I plan to ask about:
* NECK issues, as I notice I feel a bit of relief if I get neck/shoulder massages,
* TBI, as I don't know enough about it and
* perimenopausal causes.
If I have autistic traits, I do not plan to talk about them, unless relevant to a treatment plan.

I reread your questions @joeylittle and I realize I didn't really answer what you asked:

I'm curious to hear more about the brain fog, @lillesnille - since 'brain fog' is one of those concepts that is often hard to describe - I'm wondering, what does it feel like physically?
1) It feels like umm.. as if my brain is swollen, sometimes even my face feels swollen, and people HAVE commented that I look swollen or very white, though I am not sure it is true. It feels as if there is "too much pressure" inside my head. I feel it particularly as pressure from inside onto my temples and side of my head.

2) my scalp on the outside is feeling a similar pressure, but lighter and not painful. It feels more like I have some sort of rubber band around my head and more than once have I tried to remove whatever is pressing on my skin, only to realize there is nothing there.

3) WHen it gets bad on the inside, I often feel very faint in my body, and dizzy and at times I feel as if I'll vomit, but I seldom do, unless it is really severe.

4) I gradually get foggier and foggier vision as the brain fog gets worse. At times to the point of not being able to see anything but light grey light. No objects or colors left. it is scary.

5) My head can feel simultaneously like goo and like a cloud, so it's hard to describe. After a while, I get very tired and exhausted from this, and I go to bed. Normally it lasts for 4-5 days if it gets really bad (as in, I feel like lying down for 4-5 days) I do feel pressure inside my scalp all around, but particularly on both sides of the head, not so much on the very top, actually nothing at all, and only at times in the back, though at times it is bad in the back too. I wonder if it moves around, and changes from day to day, though. Can't remember.

Also am curious to hear more about your food sensitivities and how they affect you physically.
I get the brain fog if I eat certain foods, imo, though my dietician doesn't trust that I am right about this, so I don't know*.
* I am not totally fine when I don't eat.
* I am not totally fine when I eat the strict diet my dietician gave me to try. I am however much worse if I don't follow that diet.
* I can get symptoms from other things than food, too, like inactivity I think. I feel better if I go for a walk. I don't feel up to doing a real work out when very foggy, though, since I feel so dizzy and faint.
* Stress causes worsening of symptoms, I think, though I'm not totally sure. I think I remember getting triggered causes really bad symptoms, but I don't always assess my state while triggered all that well. I forget to think about such things.

The worst is aspartame, it causes me to be super sick, if I drink it, particularly if I ingest it for days or weeks. Aspartame in addition makes me emotionally weird, otherwise I do not have emotional symptoms, unless triggered. Aspartame gives a bit other emotional symptoms than triggers though. Aspartame makes me feel like I am too weak to cope with life. I just feel despondent. Triggers make me feel like running off from my own body and I just want "out". a bit different emotions, though negative. I normally feel happy, even if extremely foggy, but if I am very foggy, I often get so exhausted, I don't want to cope with other people. I obviously stay away from aspartame these days, and I don't get triggered all that often anymore, luckily. I thus generally feel stable emotionally, I just have the other symptoms, but they are actually worse anyway.

My gut seem ok-ish, but if I get very foggy brained, I tend to get diarrhea too.


EDIT: oh, there is one thing, the seems significant. When my boyfriend massaged my legs for a long time, I could suddenly feel better, as if something just clicked in place. My eye sight would just - as if flipping a switch - "fall back into place" and the fog would let go, often one side at a time. This took forever, though, like he'd massage my feet and legs for hours while I slept, as he knew I'd be better afterwards. I can't remember anything else chasing the fog away as fast, not even sleeping.
 
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It just dawned on me (after 40 hours straight of studying autism), that I’m autistic. Not even a «mild case», but a full on autist with an IQ of +/-180, who masks so well I pass as social and normal.

HOW the heck did I not know that before I was in my late 40ies??? I guess because I never looked in that direction, why would I?

But how on earth did the therapist not notice after years of trauma treatment, where I blatantly described my traits in detail??

I don’t get it! My GP thinks I’m bipolar since I have so weird symptoms and don’t make eye contact (he thinks i’m lying), my neurologist thinks I have cronic fatigue and migraines, since my brain is always so foggy, my dietician thinks I have an eating disorder of kinds, since I have non-logical food sensitivities, my mother told me she thought I was a psychopath as a kid, since my face never showed emotions, my therapist thinks I have childhood trauma since I don’t process emotions well, and since I «with my IQ isn’t already the President). And all along, I told them they were all wrong, and that they don’t treat my symptoms seriously. I got called hypochondriac by the doctor scanning my brain…

My therapist even has told me to try and not answer her questions «like an autist».

My friend is autistic and told me I am too, as she «cannot talk with non-autistic people», so I finally tried to learn what autism is. MY GOD!

Autism in women with high IQ:
Difficulty processing emotions,
difficulty with eye contact,
prone to food sensitivities
brain fog
successful masking (to the point of not showing symptoms as adults)
prone to ptsd due to sensitivities
prone to burn outs due to masking
face not showing emotions as children (before learning masking)
often misdiagnosed by health care providers (particularly mental disorders)
unusual interests
and so much more


tick, tick, tick, …

HOW THE HE.. did I not know? And what’s wrong with the health care system?

PS. I need advice. Should I even tell anyone? I’ve been mocked for «being autistic» a lot….

And I need a hug.

I too am Autistic and only found out after dealing with PCPTSD through CBT and EMDR and then I was finally diagnosed with Autism last year. I've lived with Autism all of my life not knowing why I felt so different than others. Thank you for sharing your story here. Throughout my life, I'd been treated like I was dumb, stupid, and even crazy. But not anymore. I totally embrace my Autism now and I am now capable of articulating and asserting my place in this world, whereas, previously I allowed others to belittle, and be condescending. No more. My Autism as of last year's diagnosis by my psychologist now empowers me and I also deal with attention deficit disorder and dyslexia (diagnosed). I embrace who I am and I love myself now. I used to hate myself.. My Autism deficits are emotional and social and I am working on both. My psychologist refers to me as "very intelligent". So do my bff and others around me. It's scary because I'd been treated like I was dumb by my family all of my life. I am here for you. You are not alone. Message me anytime and I will try and support you. I cannot believe I've lived with Autism all of my life and no one (medical) diagnosed me. I mask, stem, little eye contact, sound sensitivities, isolate (sensory overload), and food sensitivities OMG. Again, I am here for you.
Sending you a hug ((hug)) that you requested. After reading your above story, I too was told by a GP years ago that I had bipolar, although she was an LCSW and had no knowledge of PTSD, or autism. In fact, the bipolar dx followed me for years and I was even Rx'd bipolar meds that further screwed my head up royally and caused tremendous brain fog.

Then later a PTSD University Hosptial therapist who specialized in PTSD eventually correctly diagnosed me with PTSD (prolonged) meaning all of my life I was exposed to horrendous lifetime trauma, both, physical, mental, emotional, and sexual.

The reason my GP and therapists did not correctly dx me with PTSD and autism is that I was being treated by those who had no clue about either diagnosis/characteristics. The LCSW had little or no training in mental health issues i.e. PTSD and autism.

Looking back, I remember my cousin on dad's side being profoundly autistic Cassie (dad's brother's daughter) would clap her hands, rock back and forth, no eye contact, and is non-verbal. So, I believe my autism comes from my dad's side of the family.

I do have CFS (chronic fatigue syndrome) and I struggle with brain fog meaning after EMDR, and Covid-19, CFS diagnosis due to extreme fatigue, and I check all the boxes of CFS symptoms per my GP. I seemed to dissociate (not DID) in and out at will so I don't have to be present. It's a coping skill, so it seems. My memories are just too painful to remain constantly present. Too horrific.

Living with PTSD and autism, I do not process emotions well at all, and socially I'd rather be by myself due to extreme autism sensory overload . And I have read that some who've been dx'd with autism isolate to insulate from sensory issues. I have isolated myself from allistics because of extreme sensory overload. For me, this too is also a coping mechanism that protects me as I live with PTSD, autism, CFS, and other medical issues.

Although the jury is still out on whether autism is an autoimmune disorder, since I have two other AI's, I strongly believe autism is an autoimmune disorder. Most definitely. I've read that AI diseases travel in pairs, sometimes even three or more.

I am so sorry you were called a psychopath, and a hypochondriac, and that even your autistic behaviors/characteristics like mine were ignored for decades and/or misdiagnosed. It hurts to know even your therapist told you not to answer questions as an "autistic"? Huh! Wow! I'll bet this was painful for you to hear coming from a professional who was supposed to help you heal not cause you further damage/trauma.

Please know that I am learning to embrace not only my PTSD meaning I don't run from it anymore, and I am learning to see the pros of being autistic meaning I am a pretty smart little cookie according to my psychologist, and my closest friend (who just passed) and others around me. No one defines me, but me. I am not what others call me.

And like you, I did not deserve PTSD and did notta to cause others to treat me so cruelly. You may have trauma buried deep within your psyche. Pay attention to your dreams, and incidents that occur during each day that may trigger you to believe you may have trauma buried beneath. I am learning to love myself. You are very articulate and you are asserting yourself which took me multiple decades to learn how to speak up and speak out. I am no one's rug anymore. I am here for you as I am here for anyone who can relate here. I isolate and am grateful for this forum.

Hi from a fellow autist. Figured it out age 50.

I also know I'm autistic as strongly as I know there is a nose on my face.

My experience has been that most people, including "experts" on autism don't understand autism one bit.

Which country are you from?

Hi 🙂

Sorry. I've not read all the posts.
I agree that many therapists do not have a clue how to not only diagnose and treat autism, I have found that some do not even know how to diagnose and treat PTSD, either. This has been my experience.
 
Sending you a hug ((hug)) that you requested.
😊😊😊 ❤️ Thank you!

And thank you for telling your story. I am sorry all those bad things happened to you, both with the misdiagnosis and the traumas. ❤️
What activities make you feel better?

Autism as an autoimmune response is interesting. I have two AIs, too...

It did hurt when the therapist was frustrated with me and called my way of answering "autistic". I didn't at the time suspect autism, but I just knew I wasn't doing things like others, since she got so frustrated with me, but I also didn't know HOW to do better.

I don't feel articulate. I feel like I am smarter than a lot of people who are way more articulate than I am. I guess everything is relative.
 
What I don’t understand is since you already know you have issues with food, why are you chasing down all of these other possibilities?

Have you done a detox diet? If the answer is “no” then you don’t actually know which foods are possibly causing you issues. You literally strip your diet down to next to nothing and add in foods one by one to see if they give you a reaction. Very few doctors will actually advise this, because most doctors know that 99.9% of patients will balk at the idea of changing their diet but will readily take a pill, but there is no other way to figure it out if you are sensitive to more than one kind of food. At most doctors will say “don’t eat gluten or sugar or dairy and see if you feel better!” when this isn’t how it works.

And in before you say “I could never do that!”……yes, I have heard this before, but in the migraine realm. I honestly laugh at these people who say “I get horrible migraines!” as well as “but I could NEVER restrict my diet!” because as a migraine sufferer I know damn well that these people are told they have migraines when they just have run of the mill headaches. (I have yet to have anyone take my suggestions seriously when I suggest looking at their diet when it comes to migraines which just tells me that migraine diagnosis rates are incredibly inflated due to big pharma and the cash cow, but that’s an argument for another day.) And maybe it sounds like I’m gatekeeping, but no I’m not, speaking as someone who knows the severe pain of a migraine and how I never had to give a second thought about giving up a few foods in order to not want to off myself because the pain is so bad.

So back to you…..why are you chasing down all these alternate theories when the first place you SHOULD be starting is your diet? We live in a world where people want to chase down all kinds of explanations for why they don’t feel good instead of simply changing their diet. Plus, you are in your 40s. Starting in your 30s is when people are suddenly like “damn, I can’t eat that anymore because it really makes me feel like shit!” This is NORMAL. It’s called getting older. If you aren’t willing to take a serious look at your diet, this tells me that the brain fog isn’t that bad for you (similar to the “migraine” peeps).
 
i think that is wise advice @EveHarrington . I have also found that sensitivities change- more has ended up on the 'No Fly' list for me, but also not just what I eat but when I eat it.

I think dehydration and brain fog is also huge. Having to wear a mask at work non-stop and rarely even have a sip of water really seems to produce crushing headaches and dizziness and shortness of breath for myself and some others. Many of us too (myself for sure) are poor breathers- shallow or hold our breath. Certainly neck injuries and arthritis do it too- I have a relative with a broken back and C3 injury that gets seizures if she looks up and holds her gaze. I know also having bi-lateral difference in vision gives me terrible migraines, but so does my back/ neck/shoulder, and though I've always had bad migraines (just thought of them as headaches that made me throw up) even at my age now lack of sleep does it (and I used to pull all-nighters like they were nothing). Aging definitely adds new challenges and exacerbates what is already there. even with our mind they encourage keeping it active, but especially circulation, walking being very effective. (Like Marsha Linehan required, even with her DBT skills training in patient clients).

You know much more about detox than I certainly do, but a lot of people also swear by bone broth as an addition too. I still think managing stress and anxiety and depression, as well as actual proper self-care, is the most difficult. JMHE anyway.

Also they can't diagnose what is not yet on the radar. The EDS in my family didn't exist as an option to choose from in the day, but now explains a lot in retrospect. And they barely have the tip of the iceberg for understanding atm (FWIW probably contributes to the migrianes since the smaller blood vessels can potentially lack collagen and become too rigid). And I'm sure it is the same for PTSD, Autism and many other things. I think anyway. Really I've found you can only do what seems effective for you and trust your judgement and good doctors'.
 
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What I don’t understand is since you already know you have issues with food, why are you chasing down all of these other possibilities?
Because I never feel 100% fine, even when I eat a strict diet. I want more help. I want to know the reason I feel so bad.

Have you done a detox diet?
YES! I did, but on my own initiative, as I noticed I got worse after meals. And that is when my doctor got worried I have an eating disorder and urged me to stop the "diet nonsense".

If the answer is “no” then you don’t actually know which foods are possibly causing you issues.
I found that eating a strict fodmap diet and avoiding chocolate, alcohol, coffee, real tea (herbals are fine) and too much sugar helps a LOT.

But my doctor wanted me to try different things, and I did, and now I'm all messed up again, and I know from experience it takes time to stabilize again.
One of the issues I have in all this, is that if I am quite clear-minded for a while (strict diet), then I can actually eat other things for a few days before the symptoms get really bad again. And now that they are really bad again, it takes time before I feel ok again, even if I eat clean. It's as if there is a delay in reactions. This makes the doctor think that it isn't the foods causing the problems. So he says I should just eat "normal". I know it isn't right, but it makes me feel like I cannot get help, since I'm not following his advice. I also feel like I'm crazy, noticing changes, but being told I'm just imagining this all.

You literally strip your diet down to next to nothing and add in foods one by one to see if they give you a reaction. Very few doctors will actually advise this, because most doctors know that 99.9% of patients will balk at the idea of changing their diet but will readily take a pill, but there is no other way to figure it out if you are sensitive to more than one kind of food. At most doctors will say “don’t eat gluten or sugar or dairy and see if you feel better!” when this isn’t how it works.

And in before you say “I could never do that!”……yes, I have heard this before, but in the migraine realm. I honestly laugh at these people who say “I get horrible migraines!” as well as “but I could NEVER restrict my diet!” because as a migraine sufferer I know damn well that these people are told they have migraines when they just have run of the mill headaches. (I have yet to have anyone take my suggestions seriously when I suggest looking at their diet when it comes to migraines which just tells me that migraine diagnosis rates are incredibly inflated due to big pharma and the cash cow, but that’s an argument for another day.) And maybe it sounds like I’m gatekeeping, but no I’m not, speaking as someone who knows the severe pain of a migraine and how I never had to give a second thought about giving up a few foods in order to not want to off myself because the pain is so bad.
❤️ Yes! The only diagnosis I DO have from this journey, is migraine. They diagnosed my brain fog as a seldom type of migraine (no headaches, only debilitating brain fog/visual disturbances/sickness lasting for days after it is triggered. "Cluster-migraines without headache"). And YES, I'm CERTAIN too, that foods change things, but I feel slightly insane when the medical community says it isn't true. If I ONLY eat oat meals for a few weeks, I'm actually quite ok
So back to you…..why are you chasing down all these alternate theories when the first place you SHOULD be starting is your diet? We live in a world where people want to chase down all kinds of explanations for why they don’t feel good instead of simply changing their diet. Plus, you are in your 40s. Starting in your 30s is when people are suddenly like “damn, I can’t eat that anymore because it really makes me feel like shit!” This is NORMAL. It’s called getting older. If you aren’t willing to take a serious look at your diet, this tells me that the brain fog isn’t that bad for you (similar to the “migraine” peeps).
Thanks, Eve. I feel a bit less crazy after this post. I will go back to my diet, and then the doctors can think me crazy all they want. I am, however, a bit scared by his "you will get sick from this diet" urges. Thus why I fall off the diet and end up in fog-lands, where I feel weak and alone and scared....
 
You know much more about detox than I certainly do, but a lot of people also swear by bone broth as an addition too. I still think managing stress and anxiety and depression, as well as actual proper self-care, is the most difficult. JMHE anyway.

I agree with all of what you said there. Neck injury, stress, lack of rest, lack of exercise AND foods. And breathing... god, my breathing can be really bad. I catch myself forgetting to breathe all together at times. I work on my breath daily, I make my own bone broth (slow cooker), I live on a strict diet, I exercise my neck and shoulders, I get fresh air, I try to avoid excess stress. At times, though, it is really hard to keep up the good work. And then the spiral turns from positive to negative REALLY fast.
 
❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
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