Frustrated Because Nobody Thinks I Have Autism

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NoClueWhoIAm
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06 May 2022, 2:08 am

First of I want to state that I have an official diagnosis. The main autism symptoms recorded in my neuropsych eval, by two psychologists experienced in diagnosing autism, one with a PhD, were as follows: a history of problems engaging in back and forth conversation, initiating interactions, developing friendships, recognizing emotions in others, and being overly literal, repetitive body movements, fixated interests, difficulty adapting to novel situations, a low pain threshold, and heightened sensitivity to certain sounds, textures of food, touch, and temperature. There’s also common symptoms I don’t have that were noted- for instance, my prosody is normal, I am friendly, have no speech abnormalities, and my social overtures and responses are generally appropriate.

But usually when I meet people, including people who have known a lot of people with Asperger’s and other forms of autism (and who know a lot about what it entails and what it looks like), including OTHER AUTISTIC PEOPLE, they don’t think I have it. Now, there are a number of exceptions, and very few people have outright said “No way!” or “You don’t seem autistic”- in fact, most people kind of just don’t really respond- but I have asked a number of friends, many of who have it themselves, if I seem like I have autism or show any signs (because I wanted to know if the people who denied it were right or not), they will very often say “No” or “Not really” or even “Not at all.” When they talk about autism they don’t talk to me about it as if I’m someone who also has autism, but will with other diagnosed people, all of whom they insist obviously have it. And these same people tend to clearly see it in all other people we mutually know with an autism diagnosis. I know it’s stupid to go by the word of non-professionals, but I can’t help but notice just how often this happens, and how it doesn’t happen nearly as much to the other aspies I know (well, it does to a couple). But then they’ll comment on or criticize me for being clumsy, not getting jokes, taking everything too literally, obsessing over things, stimming, sensory issues, etc. Funny enough, a lot of the autistic people that many of my friends see as being obviously autistic don’t seem to have any of those symptoms I listed, oftentimes the only obvious symptom is their body language and poor self-awareness and reciprocity. So it’s almost like it doesn’t matter how many symptoms I actually have, there’s a certain autistic “vibe” that others can pick up in most people who have it, and if you have that vibe, you’re autistic in their eyes. If not, no. Supposedly my super literal thinking and all those other symptoms are just personality flaws of mine- even though they affect me in daily life. I even wear the same t-shirt everyday for crying out loud and spend hours a day playing the same song over and over. I know how dumb this must sound, and how it probably almost sounds like I WANT to be seen as having a disability, but I don’t think it’s that- I think it’s frustration at not being recognized as having the problems I have, as they are not seem as autism, simply flaws of mine. Also because it almost feels like I’m seen as an “other” amongst my autistic friends (although at least they’re actually my friends) just as much as I seem as an “other” amongst NTs (of whom I have very few friends). I never have felt like I belonged anywhere, as in, I was never really one of the group, and when I found out that supposedly my issues with that were due to autism, I was hoping that would change like it has for many people after being diagnosed. But no, even in groups of aspies, I’m not seen as one of them. And honestly, I’m starting to believe it. As official and thorough as my diagnosis is (what I listed above was just a summary at the end of my neuropsych eval), I’m honestly beginning to believe that I’m not autistic in the slightest, but am just a NT who’s bad at everything. In other words, just a loser. After all, people on the spectrum usually aren’t bad at everything, but sometimes I feel like I am.

I’m not sure why I’m posting this but this has really been bothering me lately and I can’t get it out of my head (I have OCD too, fyi). I guess I’m hoping that someone here will be able to give me some words to calm me down.



autisticelders
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06 May 2022, 5:54 am

I find the general public has a sort of pre concieved idea of what autism "is". Those ideas are shaped by just a few things they may have come across without having any specific information. So they think they understand autism but they really don't. Remember NT folks decide on the "big picture" first then eventually they are able to fill in the details. Autistic folks generally get as much information as they can first, in order to understand "the big picture". So by the time we understand autism, we generally have much more information. Ignorance of what autism actually "is" is so common! I have been told so many times "but you don't look autistic, but you don't act autistic, I never would have guessed" and other simply ignorant things. It is Ok to educate them, or to simply let them go on thinking what they do. Sometimes I try one method or use the other. Either way, you do know who you are and how you were diagnosed, and the opinions of other's can't change it. I am beginning to be able to ignore such comments and not let them bother me. Other people are welcome to their opinions but that does not mean you have to listen to them or try to convince them otherwise. (look at all the arguments on forums, etc.. I don't think anybody ever changed somebody else's mind about pretty much anything) Sending best wishes. Do your best self care, you know yourself better than anybody else, stay true to you and don't let the negativity mess with your mind. :)


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kraftiekortie
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06 May 2022, 6:38 am

If I were you, I would be glad that I don’t exhibit apparent symptoms of autism.

It keeps you from being stigmatized at first glance.

I understand you want people to understand you, and that you’re irritated when people criticize you without understanding you. You feel lonely while feeling misunderstood. It’s not a good feeling to have, and I certainly don’t wish this feeling in you because I wouldn’t want this feeling in me.

Have you been affected by autism to the extent where you have difficulty keeping jobs, or making friends? If not, again, I would count myself somewhat fortunate, even amid feeling misunderstood.



munstead
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06 May 2022, 6:52 am

Kraftiekortie I have to say you are one of the most considered and calm people that I have come across online. It seems as though you are in a bit of a zen state, it is very nice to observe. Once again, nice counsel and observations.



NoClueWhoIAm
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06 May 2022, 7:40 am

kraftiekortie wrote:
If I were you, I would be glad that I don’t exhibit apparent symptoms of autism.

It keeps you from being stigmatized at first glance.

I understand you want people to understand you, and that you’re irritated when people criticize you without understanding you. You feel lonely while feeling misunderstood. It’s not a good feeling to have, and I certainly don’t wish this feeling in you because I wouldn’t want this feeling in me.

Have you been affected by autism to the extent where you have difficulty keeping jobs, or making friends? If not, again, I would count myself somewhat fortunate, even amid feeling misunderstood.




I’ve definitely had trouble making friends. Even today, I cannot initiate friendships, they all initiated them with me or were hanging out with someone who initiated them with me when I met them. And I’ve never even had a job. That’s what confuses me. I’ve also had people tell me they could see very clearly that I had autism, one OT even said she’d bet 20,000 dollars I was on the spectrum- turning this into even more of a mindf**k for me.



kraftiekortie
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06 May 2022, 7:51 am

If people initiated friendships with you, that’s pretty good. That might even be better than you initiating friendships with someone. This means, except when people want to “use” you, that it is very likely that the friendship is genuine.

You didn’t state your age. If you’re still in high school, many kids don’t get jobs. If you’re in college, having a job is not really required or stigmatized if you’re studying for a degree.

Is there anything that actually prevents you from finding a job?



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06 May 2022, 11:06 am

Welcome to WP!

I agree you should perhaps be a little pleased so many folk are surprised by your diagnosis. It implies (1) your symptoms are mild (as are mine) and (2) you are reasonably good at coping and blending in with the NT-world (useful skills). But, as you note, whether it is apparent to others or not, you are on the Spectrum and have to contend with the difficulties that brings.

I also agree you should perhaps gently educate folk about the Autism Spectrum—with emphasis on how wide the Spectrum is and that if you've met one person on it then you've met one person on it...because we are all different.

Even though I did not learn I was on the Spectrum until I was 64 I've needed to cope for my entire life. One thing I've tried to develop over the decades is a dry sense of humor. I find humor can often compensate for my social awkwardness.

And, with humor in mind, I would classify you as being an infiltration-model Aspie (think Terminator). And, if I ever emerge from Pandemic isolation I suspect I will tell some folk I am an infiltration-model Aspie.


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HiccupHaddock
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06 May 2022, 3:01 pm

Just want to say that I also always think the posts by kraftiekortie are so kind and thoughtful. It's people like this that set a wondeful tone at WP.



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06 May 2022, 3:03 pm

Also always love the posts by autisticelders.. .and many others here too, too many to mention!



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06 May 2022, 11:00 pm

NoClueWhoIAm wrote:
First of I want to state that I have an official diagnosis. The main autism symptoms recorded in my neuropsych eval, by two psychologists experienced in diagnosing autism, one with a PhD, were as follows: a history of problems engaging in back and forth conversation, initiating interactions, developing friendships, recognizing emotions in others, and being overly literal, repetitive body movements, fixated interests, difficulty adapting to novel situations, a low pain threshold, and heightened sensitivity to certain sounds, textures of food, touch, and temperature. There’s also common symptoms I don’t have that were noted- for instance, my prosody is normal, I am friendly, have no speech abnormalities, and my social overtures and responses are generally appropriate.

But usually when I meet people, including people who have known a lot of people with Asperger’s and other forms of autism (and who know a lot about what it entails and what it looks like), including OTHER AUTISTIC PEOPLE, they don’t think I have it.


I can relate to a lot of this. I actually work with autistic people and I don't think my coworkers suspect I have ASD, despite some very obvious work accommodations. I think part of it is maybe that you're friendly. NTs seem to see autistic people as odd, cold, or difficult by definition, so if you don't strike them that way then they might misperceive you. I think that's partly what happens to me. I can say things they consider inappropriate at times, if I misunderstand the conversation, but I think they chalk this up to personal differences or me having a bad day. It never occurs to them I misunderstood or my intention is different than what they're perceiving.

I think Autisticelders had great advice. You know you...be comfortable in yourself. It's all we can do. Most NTs I've met have a hard time admitting when they don't know something, so don't let their certainty ruin your confidence.



kraftiekortie
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07 May 2022, 7:47 am

I hope you come back, Original Poster!



NoClueWhoIAm
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07 May 2022, 8:45 am

kraftiekortie wrote:
I hope you come back, Original Poster!

Why?

Thanks for your input, though. Really. But see, it’s a little more nuanced than that, as there HAVE been people who have told me that it is very obvious to them that I have autism, and it’s often not NTs who say I don’t seem autistic, it’s other people with a diagnosis of ASD.

I agree with what you say about being seen as NT leading to less stigma. The problem is, I’m not really perceived as normal- it’s like I am, but I’m also not. I guess I’m seen by a lot of people as being normal, but with many flaws- a loser, I guess one could say. People oftentimes comment on how obsessive or clumsy or repetitive or sensitive to sensory experiences or especially how literal I am, but don’t seem to recognize those as being autism, they seem to see them as being personality flaws of mine. So it does affect me, pretty frequently in fact. If I could truly pass as normal this would probably be bothering me a lot less, but it’s more like I pass as defective normal if that makes sense.



kraftiekortie
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07 May 2022, 9:09 am

Yeah. I pass for “defective normal,” too. I relate to that.

I’ve only been to Washington once—though I never got out of Seattle-Tacoma airport, so that doesn’t count,

You would be surprised how many people could relate to you here. There’s lots of frustration on this Site similar to your frustration.



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07 May 2022, 9:27 am

kraftiekortie wrote:
Yeah. I pass for “defective normal,” too. I relate to that.

I’ve only been to Washington once—though I never got out of Seattle-Tacoma airport, so that doesn’t count,

You would be surprised how many people could relate to you here. There’s lots of frustration on this Site similar to your frustration.

Exactly. I'm seen as a "defective normal" as well. Since I'm "normal", people think their harassing me is justified and even commendable. That's what's happening at my work.



kraftiekortie
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07 May 2022, 9:37 am

I would accentuate the positive within yourself. This is not false optimism. Because your positives are true positives.

What is something that really gives you pleasure, and makes you smile for awhile?



HiccupHaddock
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07 May 2022, 1:09 pm

Dear NoClueWhoIAm,
I think my son is very like you. He had to go through several tough years of primary school before he was diagnosed, when he was very stressed and often upset, and teachers at the school didn't realise he was autistic and thought he was being naughty.
Last year he was diagnosed as autistic by a clinical psychologist with more than 30 years experience working with autistic children and adults.
The psychologist said my son's autism was not very 'obvious' to the average person or even school teacher, because he doesn't conform to what are people's stereotypes (e.g. he doesn't flap hands, he has ok eye contact, etc.)
The psychologist said however that just because autism is not obvious does not mean that it is any less real or that easy for the person who has it. It is a problem with society that many people are quite ignorant about the huge variety of presentations of autism.
In fact, this is probably why it takes such experienced clinicians to diagnose autism, it really can be quite subtle and present itself in many ways.
I found it useful to read Tony Atwood's book "The complete guide to Asperger's syndrome", as that gives insight into the huge variety of presentations of autism.
So please don't let anyone tell you what your diagnosis is or isn't. You could say 'I was diagnosed by an expert with x years of experience, it is a very complex thing to diagnose.'