Despirate to get autism diagnosis removed...

[Past Despiration]

Okay, let me start off with this. I've met a lot of people diagnosed with autism and happy with it. They're happy with who they are. They are just... well they're okay and they accept it.

That's good for you. I wish you well. If you do not find it to have stigma on it, then that's fine. I'd probably feel the same if I had been diagnosed in a different way.

But I wasn't...

Now lets be clear on something. I am not a classically autistic person. I'm not super autistic. I don't really have major social problems, but I am geeky and eccentric. I am not overtly autistic in any way that sticks out. I do not have speech problems. No stereotypical movement none of that.

But I was diagnosed as autistic years ago. They said it was mild. But they put me into a program for the autistic anyway. I didn't need it. I swear I didn't. I could have gotten by without a program and just been "that kid who likes to be a little weird sometimes."

This approach was wholly inappropriate for me, and I tried repeatedly to get out of it, because it made me suffer a lot.

A lot of people say "Yeah, well think of how much worse it would be if you had not been diagnosed..."

Okay, you clearly don't get HOW BAD THIS WAS! I regard it as basically ruining my childhood. I was never respected. I was never acknowledged and I had a ton of stuff forced down my throat that I didn't want.

By the time I made it to high school, I had concluded that I was worthless and would never make it in life. I was completely unsocial, but this was the result of years of conditioning. They told me I had no social skills and nobody liked me. I believed them.

It was after I got out of school that I ended up living in poverty and alone for a while. My life descended into drug abuse and I attempted suicide twice. In both cases, I really felt it was because I would never make it in life.

I ended up in a mental hospital and I didn't know what else to say to them. I said "I hate autism" and as I said it, I knew I would be treated like a worthless child again. I always was.

I want to cut this story short.

Because something was done to me. Something horrible. It only happened because I was in an autism program. I only accepted it because I was. I basically told the world, my family that I was autistic.

Okay... I can't talk about it directly. It's too hard.

Basically as I got out, I began to question the diagnosis as I realized I could accomplish more than I ever thought. I started to ask whether or not I might be something else.


Sorry for my fragmented post. I'm getting really upset now.

Anyway, so am I autistic?

I have heard the following answers from people who know a bit about autism, and a few who are.

"Maybe slightly."
"You're on the spectrum. Not sure if that means autistic. Depends on whose definition we use."
"You're a bit more autistic than most, but I'd say it's not quite to the point of diagnosable"
"You are autistic, but not very, and you fall on the line"

That's what I get a lot "GREY AREA" or "ON THE LINE" of clinical significance. I've been told by some "you could go either way."

I found out I knew someone who was qualified to diagnose children and ran after him. He was apprehensive at first but then said "We used to have aspergers for people who had slight autism, but now it's all or nothing." He also said "I don't want to say anyone is absolutely not autistic." After some talking he said "I'd call you slight aspergers"


Then, after a while, he finally said something that made sense to me:

"You might be clinically autistic, but if you are, it's just slight. What you have is POST TRAUMATIC STRESS DISORDER"

He went on to say "The word autism is attached to it" and it made so much sense. I had only let that word destroy me. I had used that word to belittle and denigrate myself. I thought back to the years of abuse and how the teachers and aids had talked to me like I was 2 years old when I was 17. I remembered how when I was 19, they never would talk to me directly and instead would call my mom, despite my repeatedly asking them not to. I remembered them basically turning me from advanced interests to having to sit through lessons on socialization for little kids, and how I had believed that was all I'd ever amount to.


I talked to a doctor for the first time in years. He was not a shrink but he wanted me to see one. He told me he was no expert but what I had was still PTSD, because anyone who knew the first thing about it would call it that.

I had thought PTSD was just for soldiers who saw their friends blown to bits. Apparently years of torture at low grade is worse than a brief experience like that. I also found out my nightmares and the fact that the "A word" made me cry uncontrolably and seek out pills or drinks to make me feel okay was classic PTSD. The fact that "A word" made me self mutulate was classic PTSD. My obsessions with self hate where PTSD.


But now I do not know what to do. Most of all, I want off the autism diagnosis train. IS this possible?

Maybe I qualify for the diagnosis, but I also think I might make a case that I don't, Point is if we go by super liberal and wide criteria, yeah I guess so. If we go by narrow I don't.

Do I have any choice? I want to go by narrow.


I want to stress, that if your experience made you know yourself better or you accept it okay. For me, it's an insult, because it tears open a wound in my life. It was just...

For me, if I am not autistic, I can move forward.

But I can't deny, I'm a little.

What do I do?

 

[Fino]

Is it possible to remove a psychiatric diagnosis? - Quora

"Despite what an occasional person at an insurance company might say to you about this and despite what an occasional health care provider who has spoken to someone at an insurance company (and believed what they heard)might say, this is at the very least very difficult and very uncommon and might actually not even happen. In the United States, centralized data banks maintain information about everyone’s health history. This information comes from multiple sources, but mostly it comes from health insurance companies. Any time a health insurance claim is submitted to an insuror, the diagnosis (es) specificied on the claim is recorded. Basically forever. Same thing when a medication is prescribed and the pharmacy fills the prescription. Can one vehemently fight an incorrect diagnsosis and demand its removal from records? Definitely. But that may or may not mean that all traces of it disappear. If a serious diagnosis like Bipolar I Disorder (and think of the potential costs to any insuror of such a diagnosis, even increased risk of suicide for a life insurance company) is sent to an insurance company and then medication is prescribed for it, does the centralized data bank just pretend like it never existed? I have heard a number of people in medical insurance, life insurance, medicolegal field, and consumer affairs divisions of the state say that there is still evidence of the diagnosis in records forever. The bell cannot be unrung, as some would say."

 

[Past Despiration]

Um, wow. That was not what I expected or what I came here for and I do not know what to say.

They say autism is a lack of empathy, and I disagree, but look at that, maybe I am wrong.

I share that I was abused for more than half my life over this title, and that it drove me to try suicide, and someone goes out of their way to try to figure out something hurtful and conclusive to say. Good job, buddy, that stung.

I do not know what I was looking for, I guess. Sympathy? Similar story? Some advice of how to look at life and figure out who I am?

Look, I am, by a lot of people's standards autistic, or at least I have part of it, and that's the problem. Do you understand that this basic thing, which I have in a very non-disabling way has been used to pull my self love and self image the hell out of my body and to make me feel like I was worthless?

That's the point, and I don't know what to do. How do I address this? Am I autistic? I don't know. Yes, by broadly written standards. And how do I take that question? And how do I face myself in the mirror? And how do I put my life back together?

Do I admit to it? Do I run? What do I do?

I felt like someone might have gone through this.

I envy those of you who can say "Oh yeah, I'm fine with the fact that I have a slightly autistic thing here or there" I wish I could say that. I wish I had not been abused for years. I wish I had my youth full of opertunities and happiness.

Sometimes I even forget that I am not a monster, but whatever.

Autistic people are so mean to me sometimes because they demand I be one of them. I don't know what to be. I don't know what to call myself.

I can do everything. I'm really good at remembering things and math, and especially remembering numbers. I hate eye contact, beause it feels to with me and too much like I'm being stared down. It's so much easier to not look into the eyes when I am talking. And I talk and I drone sometimes. I'm tall and clumsey.

See? I have it. I have stuff. It's not terrible, but it is. People treated me with absolute cruelty over this so much I became ashamed. I should not be, but I am.

But thanks for the pain and rudeness.

 

[Siam333]

It's very obvious that you didn't need counseling specific to your autism, and from expiriences with my sister I can wholeheartedly say that autistic schooling/counselling/programs can be absolutely terrible and wrong the people that are in them.

It does seem to me that you have severe trauma from your expiriences bad enough to have PTSD. Even if you don't have it, talking with a regular therapist or counselor would help immensely.

As for the removal of the autism diagnosis, it's a little more complicated. I don't think you can remove the diagnosis. If you think you are misdiagnosed, maybe.

I don't want to suggest anything too extreme, your thoughts are your thoughts and I cannot change them. But perhaps trauma counselling might change your perspective on your mild autism. (Or whatever you would like to describe it as.)

Whatever you choose to do, you are worth it. I have struggled with suicidal thoughts before, and I hope that if you are still struggling with suicidal tendencies, I can remind you that your life matters as my wonderful friends once reminded me.

 

[menander]

It can help and hurt. So many variations of that...........

 

[Past Despiration]

I guess I do not know if I should have the diagnosis removed. I wish more than anything in the world never to have been diagnosed with autism, because I believe I could have made it without the diagnosis. I could have gotten by, and I was hurt so much by the people who came after. Mostly, my older childhood and young adulthood.

I will just say that the autistic schooling did feel inescapable and I do have nightmares about it a lot. I keep going back to times I was begging to be taken seriously and the times I cried in the bathroom.


I don't know what I should do. I meet the criteria for basically having mild HFA, so I can't lie, right? And people might see it in me? I get loud when I am excited and I have this loud clumsey monotone voice. I hate eye contact. I am clumsey. My memory for numbers and facts is pretty amazing. I get really fixated and obsessed with things when they seem to be amazing to me.

So this is basically going down the autism road?


I don't want to deny being me.

I am so confused.

Okay, I thought about it and I realize what I want to have more than anything (can't have it)

I wish I could go back to my kid self in a time machine and say "Hey, you have this thing called autism, but it's mild and it only gives you special talent and maybe makes you who you are. You don't ever need to feel bad about it. Above all else, don't ever be put into a special class or treated like a child when you're an adult because of this"

I don't know. Does this make any sense?

I envy people who can just say "Yeah, I'm autistic and that's who I am and nobody has ever been cruel about it to me"

Yeah, I am, but what do I do?

Someone calls me autistic, I become so frightened and that assures 100% I will have nightmares that night.

I need to confront it, because I think about the things people did to me for half my life all the time. Every time something reminds me of it. It makes it so hard not to drink or drug or something to make it go away.

But I guess I didn't make it clear: I think I probably am on the spectrum. I just wish I hadn't been diagnosed because of the fact that I could have had a life instead of what I did. I could have gone to college and been successful. Basically, I don't get why this had to happen. It feels wrong to me that a diagnosis would cause this.

 

[Past Despiration]

I think I titled this wrong. I don't know what I want!

Best I can say: if you were ever diagnosed with mild autism and they said "It's fine. No big deal. No problem with you. We're going to treat you like everyone your age. You deserve respect"

Well... you found heaven. Wish I had that. It meant a lot of low-level stuff, no respect, little kit treatment, or like I'm just mentally incompetent, and every time I tried to be respected, my opinion was never taken and I was insulted so badly.

 

[Aspychata]

This is why l didn't drag my daughter into a office to get a label and classification stamped on her head. At one point in time we had no medical specialists just like we had no pet food. We got by. She traversed with her skill set, the good, the ugly, and the spectrum stuff too. l was worried about all the things you describe and if l could wipe that all away for you, l would. But adulting requires you to move forward despite the crappy start you had. Nobody meant to be rude to you. Sometimes we are unaware that our choice in words can be hurtful. It was a mistake.

 

[Fino]

You need to accept your past so you can move forward without being dragged down by it. Therapy and close friendships help most with this, in my experience.

 

[All-Rounder]

You cannot change the past but you have already found that strength to live your life to its maximum capacity.

Social systems are often very wrong and unknowledgeable and they do more harm than good.

I don't think you yet grasp the full meaning of autism in its full range, maybe because of what has been influenced by the school you've been through and maybe because of trauma. Trauma can shape your beliefs in a way that is not accurate.

I want you to know that a spectrum diagnosis is very hard to obtain because people on the spectrum are hugely different. The labels society tries to put on autism are very wrong because only a small amount of people share either of the 'traits'.

The DSM diagnosis is actually in such a way that an autistic person can have fully complete different traits they have been diagnosed with than another person.

There is another issue which tends to happen and has happened to me because I was a long time in denial and confusion because the world through my eyes didn't seem different than for a NT. Eventually I noticed details that actually confirmed my
differences the more I talked to different members on here, I had sort of picked traits from everyone to make my identity and I still don't know if I have things I will learn newly about. That's also why the diagnosis is sometimes very hard to put.

You seem to know there are milder levels so non-autistic people often say 'you, autistic? no way!' or 'youre doing great' without knowing what actually goes on for you. Some people especially highly functional ones have also learned to mask without even noticing it, so sort of adapt so they have no idea how different they may be than others in thinking and differences. But again everyone is vastly different.

There is a social label that we are meant to be dysfunctional which is not actually autism, but it can co-occur with autism, mental retardation. And because some of us, particularly lower functioning which have more difficulties and struggle to actually even seem normal, and have more co-morbid conditions such as echolalia, alexithymia, social anxiety, trouble with executive function, etc, have a higher need of assistance.

Einstein, Tesla, and many other top world very successful people with little quirks functioned beyond well and were actually very praised for lifetimes after they had passed away for the gifts of their special interests to the world. You can do a lot of things if you don't give up. Singers, actresses, painters, so forth. Not everyone is a genius and shouldn't be put pressure on to perform in such an extreme way but some can.

There's this issue that had been noticed to impair our growth, growing up thinking we are dysfunctional. This actually makes us be dysfunctional because mentally we are limited of our potential and deprived of the success we could actually achieve. Which im very sad to hear you've been put through but glad that you have defied your imposed limitations.

I wish you further success and to get well emotionally. I suspect that will further expand your potential.

 

[Progster]

It sounds like it's not really the fault of the diagnosis, but of the way it was handled by whatever authority was in charge of putting you onto that program. Some countries, some systems or education authorities wrongly take a one size fits all approach to autism, rather than try to cater for the needs of the individual, and you appear to be a victim of this. It's really this treatment that you need to come to terms with and move on from, rather than the diagnosis itself.