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My diagnosis ruined much of my life and I don't know what to do....

It might come off as offensive to some, because I know autism is not something to be ashamed of, but for me, it has been disastrous to have this diagnosis.

Let me explain a bit of my life story and how being diagnosed on the spectrum truly ruined my life and how it got back:
First of all, am I autistic? If this was 1975 the answer would be an absolute positive no. Today, probably...

I do not really “stim” in any way. Socially I am as extroverted as can be. I don't have problems with things like communication or understanding situations. I do not have sensory issues of any kind. I have never required assistance or accommodations. Bright lights do not bother me. I don't adhere to a routine or anything..

but...
I am a geek. I don't like eye contact. It feels weird to me. I do get obsessive. I have an encyclopedic knowledge of many things. I'm great at a lot of mathematics, data interpretation, memorization. None of these things really impact my ability to lead a normal happy life. I need accommodation for none of them.

How I was diagnosed:
In my late teens I had a kind of life crisis. It should have been temporary. It was typical teen drama. I thought my girlfriend was the love of my life and I thought losing her wasthe end of the world. I thought that my school was a living hell. Looking back... this was me being a teenager with some teenager mental health issues. They should have been over after a bit.

Instead I saw a psychiatrist. He ddeclared I had “Aspergers” which was a condition that I knew nothing about. But he told my parents and told them to make sure the school knew etc etc. I guess what it was was a combination of me having ADHD, being a distinct oddball, an uber-nerd and hating eye cointact (But none of this caused me problems in life, I cannot stress this enough. Prior to this I loved and celebrated who I was)


What happened after:

They gave me a special ed aid, despite my protests. My grades went from A's to F's because my life became completely saturated with the embarrassment. Also, I remember always being told all my limits and what I could do. I was lectured to all the time. I mean all the time.

So lets say I made a statement that was not literally true because it was an analogy or an overstatement. Like, before the diagnosis, it would be no big deal to say “Our football teams is going to slaughter Springfield at tonights match” that would never have gotten me pulled aside and lectured to about violence.. Well, once I had this diagnosis these kind of things happened all the time and I was always talked down to.

I also was put into a social skills group that taught me the most basic social skills. I was taught the most basic social skills with hard rules, which of course, I was way ahead of. When I protested of course I was talked down to.

This went on and on. I was shown videos that told me I was supposed to wear shoes to work. I was taught that it was normal to bathe or shower every day.

So after some time I started to believe this. I started to think “Wow. What if they are right and I have no social skills at all?” This lead to a profound depression. I started to hate myself a lot. I truly believed nobody liked me.

They asked me if I was picked on a lot. I'd say no. They'd respond that I probably didn't realize I was and that people were laughing at me, not with me. I started to believe this too.

I kept asking to be taken out of these classes and groups, but they would insist that I would fail at life without them.

From being a straight A student, I barely passed high school


Then came college:

I went to college hating myself and having lost all my friends (remember I was an extrovert, a class clown, a person who was friends with everyone before this) and I had zero confidence in making new ones. I truly believed that I was hated and had no social skills.

I had a personal tragedy in my life. It was one of those losses we all suffer sometimes, but it hurt. I went to a councilor. I revealed to them that I had aspergers. The advice they gave me could not have been worse. They told me I was unhappy because I was trying to be social and basically “living a lie.” I told them most of my pain came from the fact that I felt I needed to be isolated from people and I had no confidence to make friends.


This is what they told me (paraphrased): “You see other people get happiness from others, and you think that is what makes people happy so you are trying to make friends and have relationships. You're living a lie. People like you do not like being around other people. If you want to be happy you should be alone as much as possible and entertain yourself with math puzzles, logic games and memorizing facts. Autistic enjoy that. Autistics don't like having friends.”

This advice decimated my life. It almost drove me to suicide.


There's a lot more I could say about the terrible things I was told ranging from autism being related to psychopathy, that I had no ability to understand morality etc etc


By the time I dropped out of college I was a different person. I was bitter. I was mean. I hated everyone. I believed I could never be good and kind and loving, so why try? I literally hurt my family and friends (not physically) on purpose because I believed driving them out of my life was necessary. I also believed that I was incapable of being a good person, so why try?

Into my adult life:
I continued to fail at everything and went from one train wreck to another. MY self hatred and my pessimism for my ability to do anything I wanted in the future was destroying me. I could not motivate myself. I continued to see professionals who reinforced this. They forced me to make my mother my conservator. This was a disaster for me and my family relationships.

I ended up in a “vocational program for autistic adults.” I was paid minimum wage. I had my hours cut. I was talked at. Everything that was bad before got worse. I felt like a monster. They repeatedly violated my basic employment rights and no matter how much I protested they kept disclosing things in violation of HIPAA. I asked every day for help writing a resume to get a better job, since this was “vocational” but they told me I couldn't ever work anywhere else.

Things just got worse and worse as I was gaslit into thinking I had all the bad features of autism exaggerated to the absolute extreme. People would also come in and talk at me (or talk about me, in front of me, as if I was not there) about all the problems and bad things that must be associated with me like “We never had people like this years ago... I don't know what it is... they say it's not vaccines, but it must be something. Maybe polution? I don't know. I just feel terrible that so many people have this condition now. Look at David over there. He came from a good suburban area, what do you think went wrong with him? Maybe it is the chemicals in our foods...”

Do you know what it is like to be talked at like you're a sign of a major defect in society?
 
Then I had an accident that improved my life dramatically:

I had a bad accident. It was just a normal... ya know... bad driver or whatever. I hit my head badly. I had to see a neurologist. That neurologist changed my life forever. After talking to me he said “I don't think you're at all conventionally autistic” I was shocked. He went on to say “Well, if someone told you you were autistic based on what you've told me, that's not enough, you need a formal battery of tests to be sure.” I took them. This was the first time I did. They came back borderline. I was told it was perfectly valid to call myself non-autistic if I felt that was a better title that worked for me. I was told I was not so absolutely undeniably autistic that I would ever have to wear that badge.

So what happened? Well first of all, I went back to college and got straight A's. I decided I wanted to dream and do the most difficult, impressive thing I could. I wanted a career that was the kind of thing a good solid non-autistic would do and people would look at him and say “Now there's a successful person right there.” I intentionally avoided science and engineering, because those are associated with autism, despite my love for science and technology. I thought about investment banking. I thought about PR stuff or other highly social very cooperative things. Eventually I decided on strategic management consulting, focusing on enterprise risk management, corporate culture, security, ROI and that kind of thing.

I graduated with honors and set my sights on the companies that had the highest rejection rate and the lowest acceptance rate. And... yep... I got in. I had no problem with the interview. I even made friends with my interviewer and now that we work together, we have lunch a lot.

You've seen stories on the news I was involved in. I work with fortune 500's. I am sometimes brought to tears to think that the diagnosis of autism cost me the happiness of more than a decade of my life. As I hand the keys of my BMW over to the parking attendant and proceed up to the 50th floor of my Manhattan office in my tailors suit, I realize I am doing the opposite of what every autism therapist told me I was capable of.

I'm not just a brilliant savant with numbers either. I go out and sell projects. I go out and talk to CEO's. I explain to the board of insurance companies why I think that they are making mistakes in how they evaluate risks. I explain to the boards of banks why they can improve their cash reserves by changing how they process loans. I write educational programs for security. I mentor new workers.

I was once told I didn't know how to clean myself or dress myself. Well... I don't dress myself entirely on my own these days... I have a tailor for that. He's the one who adjusts my Armani suits to make sure they fit perfectly. (Okay to be honest I only own two Armani suits. I wear mostly custom bespoke suits, which are just made at the tailor's shop, and I also have a couple Burberry)

But it still haunts me:

I find that I have a lot of scars from when I was carrying around this badge. I find that I need to constantly do things to prove to myself that I am not autistic (at least not conventionally). I hear a lot about autistics having sensory overload. That's why I go to places like Times Square and expose myself to every sensory experience, minor and major, to prove I don't. I hear a lot about autistics hating to travel or not being able to handle public transit. I ride the subway all the time for just this reason, and I have literally flown to other countries and flown back just to prove to myself that I can.


I also feel huge guilt when I get pleasure out from what an autistic would. Like, for example, I have a propensity for history and I used to love collecting historic memorabilia. I felt like I was doing the world a service by curating a collection of very special and rare historic items I tracked down at estate sales and such. I eliminated my collection because, much as I loved it, it seemed like an autistic thing to do. I also don't let myself get too into a subject. Sometimes I'll watch a documentary on a subject, and think “Wow that seems interesting” and end up devowering books on it... until I catch myself and say “No Dave, that's an autistic thing to do. You're not allowed to think about that subject anymore.”


I've had people complain that I made them uncomfortable because I looked them in the eye too much. I cannot bring myself to turn down an invite to a social event of any kind. I spent a lot of time meeting new people and proving to myself it does not bother me. It is exhausting to live life like this.

I think what hurts the most is I can't seem to endulge myself in the things that I know would bring me the greatest happiness. It triggers trauma. I hate to stand out or have a proposal that makes someone say "Wow, now that's an amazing outside the box idea!" That seems autistic.


So am I autistic?

Again, according to the old school narrow definition or the disabling definition, absolutely not. If you mean, high strung with a lot of personality traits that are aligned with it, then maybe.


I don't see much of myself in most people who identify as autistic.

But the thing is: I've always been struck by how much Bill Gates mind works like my own. The same is somewhat true for Elon Musk. I'm not saying I'm as great as these guys, but their quirks and their manners of coming up with new ideas, dwelling on things etc... yeah, that's totally me.


But the problem remains this: It is still causing me massive pain, which I believe is really a manifestation of post traumatic stress disorder. I am absolutely terrified of going to see a mental healthcare provider. I've taken to self-medication.

I have multiple nightmares most nights about being autistic and people laughing at me and hurting me. I have these kind of waking day-terrors. I can't explain it other than it's like a daydream, but it's a nightmare. It's a nightmare that someone will take my dog away from me for being autistic.

I have panic attacks all the time that someone will call me autistic and treat me like dirt.

I'm not a happy person at all. Despite my extreme levels of success and my achievements, I can't shake the feeling that everyone else is better than me and that I am less capable or missing something. I

One thing that has caused me some really really horrible incidents is when people have said I might be autistic. I have heard “You know, Dave, you're so great with creative ideas, maybe you're even a little on the spectrum.” This came up one day when I was at an inclusion conference. They were talking about “Neurodiversity” and someone gave a presentation saying “I bet many of you in this room have a touch of autism and don't even know it” and then we had to do a questionnaire about things This was supposed to just to help everyone feel more empathy for others and show that we are all more alike than different. It almost made me quit. I went into the elevator, stopped it between floors and cried for hours. This also reignited my old demons and I spent a few weeks trying to quit drinking all over again.

I wish there was a therapist who would treat me like a non-autistic with OCD and PTSD, but I can't find that. They all demand to know my history and I can't deal with that.I wish I didn't have to be afraid that in any kind of clinical setting someone might pick up on my unusal eye contact, my propensities or whatever. These scare the living hell out of me.

I'm a lot poorer than I should be, because this constant repetitive thought that I'm defective and need to prove I'm not a sub-human with a worthless filthy brain has driven me to blow my personal fortune on things. When I'm not flying around the world to prove to myself I can, I am having every possible test I can to see if I can prove I'm not a monster.

I have had MRIs. I have had FMRIS. I have had PET scans. I have had eye tracking. I have had an absurd number of EEGs. I have even traveled for cutting-edge high resolution MRIs. All of this has cost me a fortune... like hundreds of thousands. But I still hurt. My brain seems to be relatively normal and healthy to the dozens of raiologists who I have paid thousands to look at it.

I've had genetic tests. I've had phenogenic tests. I've had every blood test you can imagine. I've had invasive gut flora tests. None of them find anything acutely "wrong" with me. Nor do any of them find anything acutely "autistic"

I have to admit the darkest part is this: There are times when I think abiut what I would do if the world came to think of me as Autistic. What if that title was branded on me and everyone knew? At that point I look at the hinges of my office window. I look down at the roof of the adjacent structure, hundreds of feet below me, and I realize, I know exactly what I would do....
 
And I want to add this:



Some people are autistic and proud. I have even heard of people celebrating their diagnosis as like a rebirth. I have heard people say that it improved their lives dramatically. If that is you, I am happy for you.



The thing is autistics tend to be the people who are most combative toward me when I say that I wish to define myself as non-autistic. I try to explain that the word and the label has savaged my life, and since there is not 100% universal agreement as to where the line should be drawn, why can't I just decide that I want to agree with the narrow disability-based definition?

This is my life. Why do I not get to choose my title and identity? Cannot my identity be neurotypical?

We live in a society where people born with male parts get to define themselves as a woman because “That is how I feel inside and it is the only identity that brings me wholeness and happiness.” Well, that's how I feel about being neurotypical. It's the only identity that can make me feel like a whole person and feel like I can put away the years of belittlement and abuse.




Why can't I just be “A person with some autistic tendencies but none that quite reach clinical levels” or something. The moment I have to wear the autistic badge, I become almost suicidal.

And again, this is not because “I'm autistic” is a shameful, bad statement. It's just a statement that my life has turned very toxic.

Nobody should ever be ashamed to be called autistic. It's not bad or shameful to be on the spectrum. But I do feel massive shame. I shouldn't, but I do, and those feelings won't go away.
 
The most exhausting part of my life is the drive and obsession to do every non-autistic thing I can think of to the extreme. After a weekend of extreme partying, I fly to europe and back, ride the subway all day, go to the most stimulating places, eat food I have never eaten before etc. I refuse to have a routine. I instead flip a coin to decide if I will have breakfast at home or at a restaurant. I then flip a coin to decide what resteraunt - a nearby one or far one. I abstain from all things math-related (despite loving math) and I refuse to cut a tag off of clothing, even when it is a super stiff and annoying tag that would annoy anyone.

This is just... wearing the living hell out of me. Every day of my life is built on an obsession to do the opposite of what an autistic would do.

I need this to make me feel like I have worth and I'm not a monster.
but it's just never enough. I realize that, paradoxically, I could be being autistic by taking this to the extreme. Like, the constant drive I have to do non-autistic things is damn autistic in and of itself. And when I start to think of that, I just break down and inevitably find that I am just in such pain, I light up a joint, buy a bottle of vodka and cry the rest of the day.


My big fear is I am missing out on something that my brain can't do. Like, for example: Love.
Do I feel love? Perhaps I feel love but in less diomensions than others. Like I feel love in black and white while others do in color. How would I know? How do you explain blue to a color blind person?

I *think* I feel love for my dog, my family, my friends... but do I?

Do I have empathy? Do I have theory of mind? That's a big one. I will never know.
 
OK, a lot to chew on there.

1. What you were dealing with was a lot of people around you with a lot of bad information,...and were acting upon it,...much to your detriment.

2. With anyone else, I would consider a more comprehensive diagnostic process with cognitive performance testing, by a specialist in adult autism. Through the autism research organization SPARK you can have genetic testing to see if you meet any of the more common autism phenotypes. You can contact an autism research center to see if you can have neuroimaging done to see if your brain fits the more common autism brain morphologies. One way or another, it will give you more information about your autism phenotype,...or,...it may demonstrate you are a victim of a tragic misdiagnosis. However, it would appear, you've already done this,...so, at this point,...the good and bad of it would be a less common autism phenotype,...or no autism at all,...but more of an underlying psychiatric condition (it's still neurotransmitter physiology) at this point.

3. Many times people, psychologically and psychiatrically, are shaped by their environment. Recent studies in autistic infants, toddlers, and small children suggest that an underlying condition may be amplified or minimized as a result of how the parents and therapists interact with the child. There is some degree of neuroplasticity that can be taken advantage of to create alternative pathway signaling,...and depending upon how the child is raised and worked with therapeutically, appears to impact outcomes. Working in one of the largest children's hospitals in the US, I can also tell you, you don't have to be autistic to have your world twisted, morphed, and manipulated by your environment,...a lot of children's lives have been destroyed and then have to find some way to deal with it,...and move forward as adults as best they can.
 
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It sounds like you had a very difficult time, sorry you got a diagnosis you didn't want. That's great you now feel you can identify differently. Honestly, maybe keep on healing and try to move on? Hopefully your life isn't ruined in fact, sounds like you have got through this.
 
The best answer is I am borderline and potentially "broadly autism phenotype" or "non disabling autism"
I mean, I freely admit that I have a lot of those personality traits we associate with the Tim Burton/Dan Akroyd/Bill Gates types. I wish I could just... you know... I wish I could embrace and celebrate this. I wish I could just say "Yeah. I have a bit of that and it has allowed me to do great things.."

But I can't, because it invokes the memories of tons of abuse, belittlement and being told hurtful things about myself.

I do carry some genes that are considered "Autism risk" but these are relatively minor genes. The biggest ones, and the ones associated with Fragile X syndrome or something... no, none of those.


The neuroimaging of my brain has been extensive and sent me from wealth into debt. There is nothing about my brain that indicates a bad pathology. That said, my brain is not 100% average either. It is larger in the front right than the left right and it has slightly more crinkles there. It also has an area toward that back that looks kind of flat.

So I ran this by radiologists and neurologists (again at huge expense)
They told me that this was actually totally normal and every brain looks different than a perfectly average brain. Almost nobody has a perfectly symmetrical brain and almost everyone has variation in the ridges of their brain.


The only test that came back unusual for me was an eye-tracking/EEG test. Here is the problem with that test: I came back as way too non-autistic. I came back as abnormally neurotically. They told me this didn't make sense.
Basically the test works like this: If you are autistic, you will react similarly to an image of a face versus of a house. If you are not autistic, you will focus on the eyes and nose of the face primarily, and secondarily the mouth. With the house, a neurotypical will look at different features of the house at relative random.


The thing is nobody is perfect in either of these regards. It's not like a neurotypical will ONLY EVER look at the eyes and nose. Typically, you'd expect a neurotypical to look at those areas of the face like 70% off the time.


I, however, never waiveredd from looking directly at the eyes and then moving to the nose and mouth. With the house my eyes darted continually, never ever focusing on one feature for more than a second. So that's a solid 100%...

They had never seen that before.
It is as if I was familiar with the test and had put enormous effort into getting it precisemly where a neurotypical does... which I had.
Also, my EEG looks way way way too non-autistic. It's the most non-autistic EEG they had ever seen.
It's almost as if I had purchased an EEG machine on Ebay and spent hundreds of hours doing meditation, brain training and biofeedback until I could actually control my brain waves enough to make them look non-autistic.... which is exactly what I had done.

They basically told me the test was invalid.

The FMRI also might be similar. Yeah, the thought patterns looked non-autistic. However, that could be a result of all the effort I put into studying the theory of brain interconnection and extreme effort I put into constructing through patterns that would look non-autistic

I hope this is illustrating how much effort and suffering I have in my life over this.
 
First off, I would like to say that I am very sorry this happened to you and continues to affect you to this day. Despite being on this site as I like the community here, I am also a borderline extrovert who shares some traits but not others. I have never been diagnosed, and when I did attend a course for mentally different children, I felt like it didn't do anything and as I was being talked down to (similar to you).

Based on your description, I think it is very likely that you have PTSD. Breaking down for hours in a lift and contemplating suicide because of some comments or situations which wouldn't register for most people is a very serious matter which should not be taken lightly. I really suggest you find information on PTSD which could help you, and if possible, find a therapist, even though it is difficult. Perhaps you could preface it by mentioning that discussing whether you have autism or not is triggering and strictly off limits. It does make things considerably more tricky for you that your potential PTSD is connected to psychologists which could make things difficult for you. Have you discussed your feelings with your wife? It sounds very difficult to keep these strong emotions and memories inside of you for so long.

Despite probably knowing that it's wrong objectively, it seems like autism is strongly connected with disgust and humiliation in your mind, and because of this, even the potential of being autistic or on the spectrum makes you feel like you are a disgusting failure because of your traumatic memories of being looked down on and treated like a moron because of your diagnosis.

I truly mean it when I say that I wish you the best of luck in the future and hope you can make more sense of your mind and gain better quality of life. It is clear that you have built a successful life for yourself despite bad early treatment, which is a difficult task worthy of respect.
 
Nah... I'm broadly autistic. I love obsessing on historical and scientific things. I get fxated. I am so broadly autistic. I love taking things apart. There's just no denying that I have these traits.



I just... I hardcore hate myself for having them.

And the thing is, when something unique about me makes people happy or compliment me, it ruins my day... week... month.

Like someone falls over laughing and says "Dave, where the hell did you come up with a joke like that? Guys... did you hear what dave just said? Tell it again" Or someone says "Wow, I don't think any of us ever considered it, but you're correct, that is an underestimated business risk"
That will make me cry in the elevator for hours or something...

It really sucks. I wish I didn't always react like that
 
Maybe see a therapist, to help you move on? You sound obsessed, but the real issues you are avoiding are maybe working on the bullying and trauma you suffered. Maybe try working on that instead of this autism issue to such an extreme extent. With respect, you can choose to take a different direction here.
 
BTW, John's Hopkins University Medical Center has a psychology department that has been approved for the therapeutic use of psilocybin, and has shown tremendous success with "undoing" a lot of this sort of psychological and psychiatric damage. You may want to look into their research,...you may be a candidate.
 
I think the big thing that hurts is that I feel so pressured to avoid anything that could be associated with being autistic because it makes me hate myself to think that I could be. You're correct, it's not shameful or filthy to be autistic. I wish I could stop thinking it is.

I went into strategic management consulting because it seemed the 180 degree opposite of what an autistic would do, not because I actually wanted to. I've found I actually like it. BUt, if I had not been diagnosed, I would have gone for an engineering field. I can't because I feel that's too autistic.


Also, I find I have just this...all encompassing love for flying. Aviation. I mean I love it. That's not that weird, right? Flying is cool as hell. Humanity dreamed of it for eons and then in the past century we mastered it and that's cool as hell. Before I was diagnosed, I loved air shows so much and I used to actually take flight lessons. I mean, I just.. I dunno.. I love the idea of the freedom of flight and the absolute tryptophan of humanity to do what once seemed impossible.


I get this rush that seems like it hits my soul when I take the controls of a little Cessna. I just... I mean... I AM FLYING! My heart sings with delight.


The other thing I love is diving. Oh god, it's amazing. The three dimensional freedom. The ability to leave our normal worlds. The weightlessness like feeling of being able to go left and right and up and down. The ability to enter this special environment and do what we normally can't.. breathe underwater. Oh god do I love it.
But my diagnosis took this from me, Aircraft are too technical and my love for them is too strong. The same with diving., It's just not like... it seems too "Autistic" to feel such abnormal joy from a thing that is so nitche, and so technical. It feels not "Normal." A "normal" person won't spend 7 am to 9 PM at an airshow just enjoying the airplanes.

a "Normal" peerson is not intrigued by the idea of hybrid scuba/surface sourced diving as a means of getting better bottom time. A "normal" person does not have a passionate drive to explore shipwrecks.


And for this reason I can't let myself,. I miss it so much. if I got behind the controls of an airplane, I know I'd love every moment of it, and I'd be posting to social media like crazy about it and I'd relish my passion for flyin for weeks after.
And that is why I can't do it. I miss flying so much. It is like a hold in my soul. Oh god do I want to take a plane up. I mean... I can't even describe the passionate happiness of flying a plane.
But I have not done it in more than 20 years. it seems too autistic to me, and the idea that I am autistic makes me feel filthy, shameful and worthless. If only I could take a good ole Cessna 172 up and just do a few banks and smile the whole tiime. If only I could do that and not feel like a filthy failure as a human. Oh god, the way it felt, before the diagnosis... Oh god the feeling when those rubber wheels lift off the runway. It was magic.

I miss it so much.
But since being berated as being "lacking of all empathy" and "No theory of mind" and "introverted and living a lie" and "you don't understand" and worst of all "You do not value friends and should be away from other people"
I can't face that kind of ridicule. I can't fly ever again. I loved it too much. I loved it to an autistic level. I cannot fly or dive ever again without hating myself for enjoying it
 
In 1994 they came out with the DSM-IV I believe, and looking at the ASpergers Syndrome criteria for that, as you were diagnosed around twenty two years ago, based on your profile age and other information given, and comparing it to all the information you gave--abilities, interests, personality traits, any behavioral affects and limitations, I don't feel most medical providers would have felt you met the criteria for Aspergers then. As well, looking at the DSM-5 criteria for Autism, which came out in 2013 I think, I feel based on the information given , assuming what you said was true, you'd not satisfy any of those DSM 5 criteria. So, I personally don't think nerdy persons, with some OCD tendencies and averted eyes should qualify anyone for Aspergers then, and Autism now, based on those criteria contained in the DSM. If you were to get an updated medical opinion from an Autism expert, and if they looked at the DSM criteria objectively and the info you gave here, for instance, they should not give you that label. Not all doctors make right diagnoses. They make wrong ones all the time and can assume things, or base decisions on bias', ignorance and stereotypes, or without digging deeper or doing the right testing and analysis. I am sorry you have had so much difficulties since that diagnosis. I bet far more medical experts would say you likely did not have such a diagnosis than had it, if they are basing evaluation on the DSM, parental input, your info here, and . other conditions you have, etc..
 
I appreciate your response, but my response is that it should not matter because we should all be treated with dignity and self-worth. Nobody should be put into therapies or educational situations they object to.


Whether or not I am "Almost autistic" or "Autistic but only barely" does noit matter. These are words we humans invented. There isn't just an "Autism spectrum" but rather a "Human spectrum" and every human being is their own universe, a unique experience that will never exist again and never has. We all live in a universe of one, only really knowing ourselves.
That is beautiful. That makes us all priceless. You are priceless. You are worth more than all the money in the world. You are the only person who will ever be like you. That's important. You have views and thoughts nobody else ever will.
You deserve to be loved. You deserve to be valued. You deserve joy and happiness.

So do I. So does he. So does she. So do we all.

My problem is the diagnosis robs of us of this. It makes us into robots with icewater in our veins. It makes us talked at, but never to. It makes us lectured to. It makes us spoke of behind out backs. It makes us belittled, bullied and hurt eternally.

Nobody deserves that.
The diagnosis robs us of our humanity, our dignity and our worth. Nobody deserves that.
My wish is we stop declaring people "Autistic or neurotupical" And start declaring them "Steve, Nick, Brian, Matt, Mary, Lucy, Suzanne"


Let us give those of us branded with the loathsome diagnosis back humanity, dignity and worth.

I cannot stress this enough: It is irrelevant if you have autism or not. It is irrelevant if you fall on the line. You are whole and human and have the right to exist. Nobody is better than you. Nobody is worse than you.

I do not care if you call me autistic or OCD or bipolar or whatever...As long as it keeps me as a human being who someone should love and value and cherish. But "autistic" means sub-human to autism professionals. To therapists and psychiatrists and doctors "Autistic" means "Subhuman": and "Treat them like a manchild with no dignity"


IT SHOULD NOT MEAN THIS. BUIT IT DOES
 
Hello and welcome.

Thank you for taking the time and for being brave in sharing your story.

I'm sorry about your experiences and your current PTSD and self-loathing, the latter of which, as you have noted, you seem to have taken to rather extreme levels. I share your observation that for many who receive a diagnosis as an adult, that it may come as a relief as it provides some closure and a path forward. From reading a number of memoirs, for those who receive a childhood diagnosis, some get some help in areas where they are helpful, but one of the larger risks is running into a well-intentioned professional who prescribes the wrong course of action and/or incorrectly uses labels and assumptions to box someone in, rather than to let them grow and develop organically, and provide support as needed. Of course there are also some "professionals" who are only in it for the money and don't care to do anything but check off boxes so they can collect their paycheck. I sometimes can't help but wonder, given that autism related services are an industry with lots of money floating around, whether some, like the psychiatrist you saw and your school and its administrators, may have had financial incentives to force services which were clearly not appropriate for you. There are many who were diagnosed young who report trauma from inappropriate services, so you are not alone.

There are kind and understanding professionals out there, but when one has had bad experiences, it is understanding that one may be more reluctant to reach out - the proverbial "one bitten, twice shy." I hope that as time passes, that you may be more comfortable with the idea of reaching out. I do want to note that many of the "good" professionals, by nature, may have long waitlists.
 
I appreciate your response, but my response is that it should not matter because we should all be treated with dignity and self-worth. Nobody should be put into therapies or educational situations they object to.


Whether or not I am "Almost autistic" or "Autistic but only barely" does noit matter. These are words we humans invented. There isn't just an "Autism spectrum" but rather a "Human spectrum" and every human being is their own universe, a unique experience that will never exist again and never has. We all live in a universe of one, only really knowing ourselves.
That is beautiful. That makes us all priceless. You are priceless. You are worth more than all the money in the world. You are the only person who will ever be like you. That's important. You have views and thoughts nobody else ever will.
You deserve to be loved. You deserve to be valued. You deserve joy and happiness.

So do I. So does he. So does she. So do we all.

My problem is the diagnosis robs of us of this. It makes us into robots with icewater in our veins. It makes us talked at, but never to. It makes us lectured to. It makes us spoke of behind out backs. It makes us belittled, bullied and hurt eternally.

Nobody deserves that.
The diagnosis robs us of our humanity, our dignity and our worth. Nobody deserves that.
My wish is we stop declaring people "Autistic or neurotupical" And start declaring them "Steve, Nick, Brian, Matt, Mary, Lucy, Suzanne"


Let us give those of us branded with the loathsome diagnosis back humanity, dignity and worth.

I cannot stress this enough: It is irrelevant if you have autism or not. It is irrelevant if you fall on the line. You are whole and human and have the right to exist. Nobody is better than you. Nobody is worse than you.

I do not care if you call me autistic or OCD or bipolar or whatever...As long as it keeps me as a human being who someone should love and value and cherish. But "autistic" means sub-human to autism professionals. To therapists and psychiatrists and doctors "Autistic" means "Subhuman": and "Treat them like a manchild with no dignity"


IT SHOULD NOT MEAN THIS. BUIT IT DOES

True, about what you say, but unfortunately we cannot change stereotypes, discrimination and ignorance coming from those who assume things about those with certain conditions or judge persons unfairly by labels, looks or demeanor. So, that means often diagnostics is important, and also, if one is diagnosed with the wrong condition, then treatments are often wrong there. Also, many persons need the right diagnosis to get the right accommodation, services, benefits and so on, and for their peace of mind or sanity to make some sense of things.

As many Autistics are into fact and details, many I'd say could want to know one way or the other whether they had Autism or not. If you do not want others to judge based on diagnostics, or don't want persons treating you as inferior, causing your motivation, attitudes or behaviors to change, then don't focus on what that doctor diagnosed you as, as it' should be irrelevant in your eyes, but focus on how you perceive yourself to be. Also, don't advertise you have Aspergers/Autism, if you do not want unfair treatment or judgment, as we cannot stop that.

It's your choice there in rejecting or accepting diagnoses, how you perceive any diagnosis, and how you perceive yourself as a person knowing we cannot often change others' opinions and feelings towards us.. Yes, they are wrong for all the things they did to you, and whenever professionals and others treat Autistics like they did to you. But, you are an adult, and you say you are fine with communications, language and such, so it's up to you to set those persons straight. Otherwise, your failures since that diagnostics will play into their hands. It could justify some things they said.
 
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Hello & welcome @Regretfully Diagnosed.
  1. ASD1 (as it is now called) was not an available diagnosis in 1975. (We were all misdiagnosed then, if we were diagnosed at all.) Even today, vocational rehab services (by me, at least) do not seem to grasp how social disability is distinct from cognitive disability.
  2. Giftedness (without autism) has many similar qualities & social consequences as ASD1.
  3. A higher percentage of gifteds are autistic [usually ASD1] than in the general population. (That condition is called "twice exceptional" or 2e.)
It takes an an autism-competent neuro-psychologist to determine if you are either, neither or both.

If you are in the USA, see
 
I'm sorry that I have not had enough time to read all of you writing. Work seems to take too much of my time. Still, I wanted to add a comment, so if I am off in any way, please correct me.

I'm afraid I don't have any advice for what to do, but I would like to say that what happened to you was a catastrophic tragedy. And unfortunately, you are not alone. Such tragedy's are very common and not necessarily isolated to autism. It is amazing how a persons interaction with family members, school, work, professionals, etc., etc. can totally screw up a person's life. I know a black person who throughout their childhood was taught to be deeply prejudice (to bigot levels) against black people. Making them hate themself. A very hard thing to overcome and in my opinion, an absolute tragedy.

I am indeed autistic. No room for question about that, however, I was not diagnosed until I was 65 years old. My early years, especially school, was total hell. I grew up in a "backwoods" rural area and attended a very backwards, conservative school. I was "diagnosed" as retarded, but, thankfully, received no treatment. What I received instead was relentless, brutal bullying by the teachers, school staff and family members. No tolerance for anyone "different". I have spent most of my life on the edge of suicide because I hate who I am and hate how "defective" I am.

Fortunately, however, I am self-diagnosed - on my own terms. That means that no one knows about my diagnosis except for those I want to know. So, I have never had any "treatment" forced on me. But, I do have an idea what that is like: I am a Type-1 Diabetic and learned early on that the medical community is tragically clueless about T1D. So, I fired my doctor and have been taking care of it myself for the past three decades. I started self-treating before firing my doctor, which generated an argument with every visit. My doctor would go over my blood work and exclaim how excellent it was. So good there wasn't any indication I was even diabetic. He would then follow that with a scolding for not following the established diabetic control methods and that I was doing it all wrong. Each time I reminded him what he just said about my blood work. I would explain that I have studied the biology and experimented with my own control and found the "established" control methods are tragically wrong. I explained that that was why people with T1D always suffers diabetic complications and pointed out that I have no complications at all. He would get exasperated for not having an answer. I eventually got tired of the arguments and realized it was all worthless so I fired him.

I have a strong sensitivity and resentment to being stereotyped. I suspect that is something the "professionals" did to you.

All I can say is to try to live your life on your terms and try to realize that all the "treatment" and teachings that you are somehow "defective" are all totally false. Every person that has ever existed on this planet is different. There are no two people exactly alike - not even identical twins. So, if you are "different" in any way, then that is just nature and you are how you are supposed to be. That is what I'm trying to keep in my mind. While it is hard to convince myself that while I keep getting told I'm "defective", it is definitely helping. The T1D thing helps me to realize that "professionals" are just people who can be just as wrong as anyone else. I just have to be relentless. At least, now I'm a little less suicidal.
 

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