Why do I still keep hoping I was misdiagnosed?

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20 years I have been diagnosed with this s**t, yet I still feel insecure and ashamed of it, and although I have been posting here for the last 8 years, I still kind of hope I just have anxiety issues, along with ADHD (which I was also diagnosed with), with like some ASD traits thrown into it but aren't specifically diagnosable.

I smile when I think of all the ASD symptoms I don't have and if I cannot relate to autistic people here about certain things. Some of the social instincts I have and the natural ability to lie to save someone's feelings and the way I can 'feel' emotions of other people, etc, make me feel like I don't have Asperger's. So I think, if I have these abilities then I can't possibly have Asperger's, can I? Then I look at the old home videos of me as an infant, and the photographs, and I seem to be so 'normal', even in the videos of me at a birthday party at 3 years old with lots of noisy children I didn't know. I was even bouncing a large balloon about, joining in party games and making eye contact and looking so relaxed and unaffected by all the chaos going on around me. I didn't have special interests either, things like that make me think that I might have been misdiagnosed when I was 8.

BUT (a big, fat but)...

...I go on to YouTube and watch videos of Tony Attwood explaining about Asperger's in females, and my heart sinks as I go, "that was kind of me as a child". Then I get all down-hearted and depressed and start hating Tony Attwood for being so accurate.

I don't want to receive critical posts like "grow up" or "get a life". I'm just sharing my feelings and wondering why I live in hope that I don't have Asperger's. This just proves that having a diagnosis earlier in life does not always mean it will make you secure and happy about yourself. I actually wish I wasn't diagnosed until then or early adulthood, like most the females here, because then I won't feel so 'severe' on the spectrum.

i am so afraid to have a false negative diagnosis, i never try to get it. know who i am, i do. im such a flaming aspergerian it gets apparent to anybody with half an idea. i have the issues u are mentioning, about other parts of my identity, such as my PTSD spikes. i can be awful in triggered state. i mean, i can relate to that, i know what it feels like, its a horrible thing to feel, and i really would like to do what i can to help u, if possible.

lets say this. we dont chose our neurological buildup, the same way we dont chose skin color or gender. we are born that way. being ashamed of asd, is same as being ashamed of being, for example, asian. or genderfluid. and yes, people get to be ashamed of things like that, things they never could chose, or control. there was a singer who had surgically replaced his entire skin to be different color. its not an easy thing to get over. u cant just stop. u cant.

i know it so well. i hate myself most of the time, every time i lose control over my inside-skull demon army. and i lose control often. i mean, i can and CAN relate. and then u are feeling ashamed of that reaction u have, it seems to u that u are somehow well, mistreating somebody. u are NOT. everybody has a thin line. i am embracing my autism, but i have had it in such a deep cellar for 30 years, i would be much like the abformentioned singer. fake NT so hard i'd forget myself, who i am. i had realised how self-destructive that is for me, im trying to change. its not easy.

shaking, burning up in the fever, in the realm of pain, i am the deceiver, now i lie to myself, so i can believe her, as she disassembles my mind... at war with the world. theres no surrender, no time to remember. i am a world, before i am a (wo)man, i was a creature before i could stand, i remember before i forget.

ok, enough of my rambling. there are a lot, a LOT of things people think as shameful. its all in our heads. its hard to flush out. it sticks. it happens to NT, to AU, to each and every gender and race. what formed such loop in u, is a question u need answer for. only way to find ur way out, AUT of it. u are AUSOME! and awesome, too. u are a person. there are upsides, there are downsides. none of us is ideal, we are alive. only a statue can be ideal, and thats dubious too. depends on perspective. what else can i say to make u feel better?

I don't quite understand what your reply is about, as it seems like you were writing a song or something.

I just need to know why I'm finding it so hard to accept my diagnosis I've had for 20 years, even after all the help and support I've had over the years. I can't stop feeling angry and ashamed of myself for having it. Some of what Tony Attwood explained in his videos about girls with Asperger's described me and I was like, "f***s sake that was how I was", even though I'm not the stereotypical Aspie at all.

Last edited by Joe90 on 05 Nov 2018, 4:31 pm, edited 1 time in total.

That really is a question that only you can answer.

i am calling a few lines my derailed mind finds relevant. if they dont respond, well, sorry. we must be on different waves or something. sorry my post confused u, then. i hope u get some idea somewhere. sorry i wasnt a help.

See, another thing I cannot relate to other Aspies about; the way they like honesty and hate lies, yet when you are honest they get upset. That is why NTs lie and I know why and I don't blame them.

But I still have Asperger's because stupid Tony Attwood has to be so professional at it and happened to describe the child me.

I am insecure about Asperger's, that is why I'm posting here about it.

I guess hoping to be told you've been misdiagnosed opens up the possibility of some sort of release from the things that have happened in the past that still bother you, the way people related to you, it would mean that they were wrong about you. It would be a validation of you being you and not some label, confirmation that life could or should have been different, easier, better... if that's how you'd want to imagine it being. I think that's all it would be though. It wouldn't change the reality of what happened in the past and you'd still be you, with whatever issues you do have, going forward.

The only thing what Tony Attwood said that didn't describe me as a child was having a special subject you focus on and can't stop talking about it. I didn't have that symptom, until I was 11, and even then my "special interests" were like obsessions/crushes with people. But before I was 11 I had casual interests and I "followed the crowd", meaning I was only interested in the latest crazes, like in 1999 it was all about Pokemon and I hated Pokemon but I got myself into it just because all the other kids at school were mad on it.

But I did take imaginary games seriously and I liked to boss the other kids about and get them to play the game my way, but even then that was only if I made the game up. If they had made a game up and I joined in, I played it their way.

But what Tony Attwood described the most about me in his videos was that Aspie girls are "angels" at school and "devils" at home. Unfortunately that describes me. But I was rather hyperactive in the school playground, then when I got back into class I was shy. But I did suffer from shyness and anxiety. At home I was very hyperactive. But I have been diagnosed with ADHD in adulthood, so I always thought my hyperactivity was to do with ADHD but apparently Asperger's causes hyperactivity too, which I didn't know until I watched Tony Attwood's videos.

Lastly, I hated tidying my room as a child. I would even cry if my mum told me to tidy my room. So when we finally did tidy my room, I didn't like my younger cousins to move my things or mess things up, not because of liking things in order but because I didn't want to have to tidy again. But once the room got messy again I didn't care if my little cousins moved things. Also I used to start playing with toys before school and I wanted to finish playing when I got home from school, so I preferred the toys to be untouched so that I'd know where I was up to, but if someone did tidy my toys away while I was at school I would lay on the floor and cry. If I had NOT started a game with my toys, then I wasn't bothered if they were packed away or not.

So I think my insecurities about my diagnosis is based around confusion. My "Aspie-ness" as a child seemed normal for an Aspie, but each "Aspie thing" had a reason attached to it that seemed either like ADHD, anxiety it typical child behaviour.

What do you think after reading this post?

I kind of do. Although I know I am and was only recently diagnosed and am relieved to have it confirmed. I still kind of think maybe I just didn't explain something well enough and he's mistaken.

My partner has an autistic cousin and when I'm around him I get really self conscious that surely I can't really be like that. And are people really looking at me and thinking the same things I think when looking at him? It actually gets me quite upset and embarrassed of what I must look like to other people.

BUT most importantly. Diagnosis or not, it doesn't actually change who you are. The diagnosis doesn't make you autistic, so without the diagnosis you'd still have all the same "symptoms"

Could I ask what urged you to get diagnosed?

Yeah, it's quite a feeling to cue up a Tony Attwood lecture video and become mesmerized as he precisely describes every bit of weirdness I remember in myself as a child. It's like he was watching. "You might be an Aspie if...."

I'm old enough to be from a time when there wasn't Aspergers to diagnose (wasn't known in the United States) and the words used in school were "ret*d" and all the rest many of you will remember. There are some advantages to having a diagnosis. In the 1960's most people thought "autism" was profound, but people were starting to get the idea there might be degrees of it. Nevertheless, it wasn't something to be so sympathetic about.

Later in life, however, I don't care one way or the other, because along with its considerable disadvantages I recognized some very significant advantages, too. I'm not sure I'd be better off without it.

I know it won't change who I am or the things I did, but if I was to be told and confirmed that I was misdiagnosed, it would make me feel better about myself. I know it sounds a bit illogical but that's just how I feel. I've always been embarrassed about it, maybe it's because of the stigma that's attached to autism, I don't know. Each time a murderer claims he has autism on the news, I get even more anxious because it just tells the world that autistics are potential murderers when it's most probably quite the opposite. I don't want to be associated with something that has so much stigma like that.

I got diagnosed at age 8 because of my behaviour when I started school at age 4. While I seemed like any other typically developing infant before the day I started school, my behaviour was out of character at school and it was all because I was frightened of school, even though I was fine socially and emotionally at preschool. So that got the teachers attention on to me and I was suddenly "put under a microscope". It took 4 years but I finally got the diagnosis of Asperger's when I was 8. My parents wanted to go through with the diagnosis stuff because they thought it'd help me get support at school.

I just wish I hadn't acted out like that when I was 4, then I don't think I would have got observed and assessed and diagnosed. I would have had to just live along with it like most of the Aspie girls on WP, and I would have still made it. I mean, this thread is proof that a diagnosis in childhood doesn't always make you accept yourself and grow up to be well-adjusted with yourself.
I just wish I had cried or something if I was that frightened of school, instead of jumping on the desks and pushing the teacher. I mean, if I was frightened at preschool I would have just cried like any other toddler, because I remember a couple of incidents at preschool that worried me and I seemed capable of telling an adult why I was worried without hitting out. I mean, what the f**k???

If you feel that your dx was only really applicable to your youth, and that now you feel much less autistic and can "pass" easily, why not consider another dx?

Your frustrations seem to be directed at your dx. This is what I dont quite understand. Your dx is a piece of paper from 20 yrs ago. It doesn't really condition you. If you feel the piece of paper is invalid, get another one.

You are probably pretty clued up on autism, and could go into a fresh dx session aiming for "NT status", if thats what you want. Any decent diagnostician ought to be able to recognise your strategies for what they are but, big deal - you emerge from a fresh dx session with either NT status, or new, valuable, information.

And. For me, personally, I consider this site to be unhealthy. It presses far too many of my buttons. So I dont read or post here any more. Nor do I watch Attwood yt vids.

Agree with doofy. Get another diagnosis.
It is actually very possible for you to classify as autistic as a child but not as an adult.
You'd have to go either to your gp or your whichever autism service you're associated with. Explain all the reasons you don't believe you're autistic, write them down so they can keep a copy, and explain why you think it would benefit you to have the diagnosis removed, mental health, employability ect

I didn't think a person could grow out of Asperger's?

I know I'm not neurotypical, as I have ADHD and anxiety disorder. But it's just so hard to tell where the ADHD, anxiety and Asperger's start, as they all overlap. Sometimes I feel like I've always been PDD-NOS, or whatever it is, but I don't know much about that. Maybe "borderline ASD" as like a co-morbid to the other conditions, but I don't know. A few people in my family have some borderline ASD traits but not enough to qualify for a diagnosis. I consider them NTs though because they have never been as affected as me, and they don't have ADHD, although anxiety and depression is very common in my family (although I don't think anxiety and depression runs in genes, or does it?)

I think I will go and see a professional to talk about this. I just feel like I don't know who I am, and so maybe I might feel happier in myself if I knew for definite what I have, as an adult, as I have changed a lot since childhood.
I just see mixed messages everywhere (maybe that's not the correct way to call it exactly), but I have more symptoms of ADHD than ASD, also anxiety describes me as almost a whole person, and I cannot hide that from anybody. Even being on meds, I still suffer anxiety as though it's a condition, not just an emotion.

Well...

imagine if you had NOT been diagnosed.

You would be saddled with a hundred times more shame, and 100 times more self directed anger. And you probably wouldn't even be getting any support on top of that. That's because you would have all of the same problems caused by the condition of autism, but you would not have had the label of "autism" to explain the problems.

The you who lives in this parallel universe in which you were not diagnosed has a life far worse than your life. So why do you envy this alternate person?

Yeah I did loads of research building upvto getting my diagnosis and definitely read that a child could be diagnosed as autistic but as an adult can have improved and no longer meet the criteria for autism. Even in what you've said, the things that make you think you might be autistic are from your childhood.

Definitely get yourself retested. It'll do you a world of good either way