Anyone else feel like the diagnosis ruined their hapiness?

Post Reply New Topic

I felt a touch (unbearable) of that this morning (albeit I'm not diagnosed). A person with a limitation faces: what do I want, what can I do? I often think about other folks who are confronted with hardships (minor or horrific) and know that they go through a similar transition. What happened? Ack! What is there now? What is within my power and ability to do? What resources do I need? etc. Because of my recent ASD suspicions related to work pressures, I put on hold my processing of a medical hardship 2003-2015 (which ASD sheds some light on actually). My point - it's not easy to integrate a new awareness (or trauma), but I have to believe it's possible.

OK, now I get philosophical and preachy, so you can stop there or continue at your own risk.

If a person that was diagnosed had not been, would life had been better or worse? (You say better for you.) If a person that wasn't diagnosed, had been diagnosed, would life had been better or worse? (I think a chance to be better, but...) Answer: UNKNOWN. I suppose there could be probabilities, but then we don't control many circumstances of our lives. So, what's more important to consider is: What do you want for your life now? How do you get there now? Give yourself a "fresh slate".

Perhaps you can "unlabel" yourself. If the diagnosis was in error -get it corrected. If the diagnosis is true, then either reject the label anyways (delusion correlates with happiness) or redefine it for yourself.

I read back to my college letters and I literally wrote "I am lacking, lacking, lacking". I knew I was lacking, I didn't know what, I didn't know why, but the lack was unbearable (I was undiagnosed). I got help, I got through, barely, painfully. And now 25 years later, faced with a significant (stressful) life change, I am facing that feeling again.

I used to get angry at a red light - it was holding me back (from goodness). Then I was grateful - the red light might have held me back (from badness, an accident). Answer: UNKNOWN. More importantly, what happens if the light doesn't change? If you drive or imagine driving, how long would you sit at a red light that isn't changing?

I'm sitting at a "red light" right now for a particular issue in my life. It's uncomfortable. I am confronted by all the "reasons" for *my failure* ...and... I'm going to put those aside and move forward anyhow. One foot in front of the other. I will create an opportunity to thrive, even if I have to drag myself along kicking and screaming (I'd prefer a more pleasant journey, but I'm working with what I got). I'll be glad when I'm through it.

Wishing you get through/past your angst.

Firstly, I am sorry you feel so upset after your diagnosis but this comment terrifies me and I frankly find it a little offensive. Once you start allowing euthanisation of people with disabilities it would most likely quickly become a slippery slope and result in a dystopian future where people want to forcibly kill people. Nazi Germany is a good example. Hitler spread the idea of creating a perfect group of people and then promptly killed 'undesirables' including disabled people (babies were sometimes starved to death but if not were killed by other means). So that's a big no for me!

Anyway, to answer your question I should first acknowledged I'm only in the middle of what would be considered Aspergers. I was suicidal before I was diagnosed, self sabotaged, over exercised, binge ate and self harmed. I truly wanted to die. However, learning what was going on allowed me to find ways to go around it and learn what I could to hack my autism. It also allowed me to explain myself to others and as I learnt more, I found the friendships I made were stronger and made me happier. I just need to tackle my anxiety disorder and I'll be good and that was triggered by being bullied for about four or more years and traumatic family events. Knowing the label changed my life for the better.

I won't lie and say I never wish I wasn't different but then I would never love things the way I do and think the way I do. I think if I could fix my social reading I would, but I wouldn't want to change much else because so much of it makes me... well me.

I hope you can come to terms with your diagnosis or at least find out it was wrong if that makes you feel better. Try to talk through these feelings with a professional and make sure that there isn't anything else making you feel like this. Best wishes!

But you also wrote:


You obviously do have feelings, including the afore-mentioned "deepest fears."

And you obviously do have a mind, that can ponder philosophical questions about ethics and about what you do and do not know.

And you obviously do have a subjective reality -- in which, alas, the afore-mentioned "deepest fears" loom very large.

And you obviously do exist. Perhaps the following twist on Descartes' famous observation might be relevant here:

"I worry; therefore, I am."

This is the first I have heard of the Sally Anne test. Had it been given to be at or before age 4 I would have failed for sure. I have no memory of anything before age 5 so obviously had no self awareness. To further compound matters, I was mute until age 5 as well, so I was told at least.

I too have done a considerable amount of research into autism and what it entails, enough to realize that before too long sources begin to contradict one another. From each of their individual perspectives, what they say is probably true but when taken together there are contradictions. This is because as has been said, each autistic differs from others in various fashions and degrees, enough that it almost defies classification. Don't let me stop your research (we all need to do more of it) but strive for general trends and take the details with plenty of salt.

It sound like a kind of torture you putting yourself through. Hating and trying to destroy something that is an inseparable part of you.

I had an asperger diagnosis revealed to me early this year and can relate to your response of feeling the cruelty of having missed out, and will always miss out on something valuable that you were oblivious about before.

I have and still have that feeling of having been a deluded blind man for most of my life and being confused with all the weird things people said about colors and shapes I couldn't see, and wondering why I so often bumped into things and stepped in holes all the time that most other people avoided by some magical power I didn't understand.

Some important things to do, when doing online research about ASD, are (1) pay attention to the dates of your sources (and the dates of any experiments described or sources referenced) and (2) look for critiques of your sources, if any.

The psychotherapeutic establishment's understanding of autism has evolved over the years, and it's important to know the history.

For example, back in the 1990's, and still to some extent up until a decade or so ago, it was commonly said that autistic people "lack empathy" -- period, end of story. Eventually it was recognized that the empathy story for autistic people is much more complex than that. For example, some of us actually have hyper-empathy to the point of being too overwhelmed to respond appropriately, while others lack cognitive empathy, to one degree or another, but still have affective empathy.

Last edited by Mona Pereth on 04 Sep 2019, 12:22 pm, edited 1 time in total.

Back in the 90s Asperger's meant noticeably having at least 3 of the following symptoms (alongside some social deficits): sensory issues, wanting routine, special interests, meltdowns and anxiety issues. Then there are other autism traits that usually go along with the mentioned above symptoms, such as odd stimming, difficulty multitasking, etc.

These days Asperger's, or autism level 1, seems to mean anybody who is eccentric, shy, introverted, anxious or intelligent, even if they don't display any of the most common autism symptoms. I know that everybody on the autism spectrum are different but it seems that the line between NT and autism is becoming thinner and thinner.

I think soon autism will become a fashion label. I'm not saying anyone in this thread have been overdiagnosed, I'm just saying that it seems to be more common now than it was in the 90s and even early 2000s. A person these days can have normal social skills from early childhood and have lots of NT friends, but if they are eccentric and have an anxiety disorder or something, they tend to go "oh I'm going to get assessed for autism".

It just makes people like me with high-functioning Asperger's and has always been considered as "mildly affected", seem severe. I mean, it's rare for a girl with Asperger's to be diagnosed so early in life anyway, but all these people with lots of friends and no sensory issues or the other main symptoms, make me feel like I have severe autism, even though I've always been verbal and socially awkward but NOT socially clueless.

Part of why this is so hard is that I am frequently lectured to that I either "do not understand people" or "can't understand etiquette" or that I "lack empathy" and when I say I have empathy, I am told "Oh what you have is emotional empathy, but you have no cognitive empathy." In other words, I am incapable of reading people, deducing motives, understanding dishonesty etc.

This confuses me to no end, because, if anything, I am better at getting people and figuring out psycological motives, understanding people's mindsets and so on. I've never struggled with this.

I'm also frequently told "See, you're autistic, so that means you struggle with the idea that if someone gave you a present you do not like, it's not that they meant to." No, I get that just fine. Everyone has different tastes and makes mistakes, and if someone gives me a gift, I should obviously pretend to love it, because unless they're just being an ass on purpose, they'll not give me something intended to be disliked.

That's downright intuitive. Also, people like different things, have different feelings, see the world differently. Some people like spicy foods and some don't. And some people are afraid of heights or spiders and some are not, and some love action movies and some love comedies, and some people don't especially like certain types of humor.

I am forever being told I don't get this and lectured down to that it's beyond my understanding.

And I think I read people just fine. I can tell when someone's voice is trembling or their attention is distracted or whatever, that something is wrong. Am I perfect at this? No, of course not, because it's not an exact science and additionally, people are deceptive from time to time. But I am not oblivious to social context or nuance. Oh, I'm always told that I must be.

Anyone who knows I have been diagnosed is bound to talk down to me. It usually starts with "Let me explain something to you..." and that's followed with something like "Sometimes people get crabby when they're tired." or "Some people feel like it's important to go to church because it makes them feel connected to God.."or "When someone says they are feeling ok, they might just be being polite."

Yes. Yes. I get this. I'm not an idiot. I've never struggled one bit with anything like that, and yet, I continue to get told I am.

In fact, I would say I am better than average at dealing with delicate situations and stuff, but I'm forever told I'm completely incapable of it.

Every time I have tried to get any help for this condition, I get the same stuff that makes me feel like I must have an IQ of 2. I get lectures "Now, when you meet someone, they might want to shake your hand. You should hold their hand firmly, but not too hard, and shake it for just a couple of seconds..."

Again... why the assumption that I would not know this or get it?

I have never found any kind of autism therapist or support group that did not descend into talking to me like I was a 5 year old who was incapable of knowing how to conduct myself in social situations or read people. This has never been a problem.

Except when I do have one tiny faux pass (which I assure you, happens to everyone from time to time) it is used against me as proof that I am completely aloof of all things human-related and makes me feel about 2 inches big. Oh god, if I ever do miss a beat socially, immediately it's "Okay let me explain to you how this works..."

If you've "never" struggled with this, then why were you diagnosed with ASD? Precisely which disabling traits of ASD do you in fact have? (You mentioned earlier that you had difficulty with eye contact in the past. Any others?)

Another question: Is there anyone in your life who might be gaslighting you for whatever reason?

If you've never struggled with making friends, finding jobs, etc., then you should look into the possibility that your diagnosis is a misdiagnosis. If a diagnosis is accurate, it should help you make sense of your life, not just confuse you.

I would suspect that you might be in the BAP (which is not a disorder) at most. (Either that, or you're an autistic person with the exceptional good fortune of having grown up, and still living, in a place where you're surrounded by autistic-friendly people.)


Personally I've opted out of the entire custom of ritualized gift-giving. Since age 20 or so, I've asked my friends neither to give me holiday/birthday gifts nor to expect such gifts from me. I absolutely loathe the idea of someone giving a gift that turns out to be unsuitable, and the recipient having to lie about it -- that's just a waste of the giver's time and money.


The vast majority of autistic people are aware of these basic facts. Like I said, basic "theory of mind" is not the problem.


Who (or, at least, what general categories of people) in your life are doing all this lecturing?


Most of us aren't totally blind to these things either; we just have significantly more difficulty with these things than the average person -- at least when hanging out with a bunch of NTs. (On the other hand, some of us may be better than NTs at reading at least some fellow autistic people.)

I've long felt that my social skills were very "uneven" rather than absolutely lacking, and indeed there are a few social skills I'm probably better at than most people, such as identifying and straightening out misunderstandings.


What kinds of help do you feel you actually need, and with what kinds of actual, real problems of yours?

The reason I was diagnosed: Well I guess I have always been a goofball, and I have a slight monotone to how I talk, but I attribute that to a lifetime of nasal problems. I get obsessive on topics that interest me. When I was a little kid I used to repeat phrases a lot. I don't know why. When I am talking, I am simply not in the habit of making eye contact. I can, but I must remind myself. I had some meltdowns when I was a lot younger. I am very high stress. But I don't know if this is really autism.

When I was much younger, I was told I had Aspergers, which, at the time, was considered separate.

Around 2008, during the recession, my parents urged me to try an autism vocational program, because the area I was in was especially hard hit by job losses, and I really did not want to, but the place told me I'd be perfect, because I would not work there long, and they'd find me a job. What ended up happening is they were inept and were untentionally abusive because they belittled me every day and drilled into my head that I was incapable of anything.

I associated the word "autism" with the fact that people did not take me seriously and treated me like a child and as time went on I hated autism more and more with a stronger venom. I became very self-destructive and hated the idea that this thing was within me.

As for what I want? Well, I have been told that the employer left me tiwht PTSD, but I don't know if that is true. I still think about that employer every day and have nightmares about it frequently. Being called autistic causes me a kind of fight or flight reflex.

Once in a while someone will say something to me like "You seem like you might be on the spectrum" and it will often result in me doing something very self-destructive when someone says that to me. I sometimes feel like I need to prove to the world how much I hate autism and how hard I will work to kill the fire of autism in me.

I don't know why. I never want to be in any autism therapy ever again because it causes me to turn to substances and self-harm, since it reminds me of those days when I was treated so badly.

What do I want out of life? More than anything, to move to some place where autism is not known about much. Some place like the Balkans or Central Africa or something. Nobody would ever call me autistic there. They don't really know what it is. Psychiatry is not so much a thing there.

But being called the A word triggers me to feel horrible about who I am.

I'm sorry. I know others don't feel like autism is bad and it is part of their identity. To me, it is only something people ever used to hurt me.

You're probably better at these things than you think.

The empathy thing, that is always a confusion because of everybody having their own definition of empathy, and even if you empathise the same as the dictionary definition, you'll still be denied of having empathy and instead you have "compassion". It's like some people believe that autistic = no empathy. Yes that gets said here on WP in empathy threads. So annoying.
Also, autistics have to work twice as hard to empathise with NTs, but NTs don't need to understand autistics. I'm not saying NTs lack empathy, but if they do on certain things, it gets missed because of everyone being so hung up on the "autistics lack empathy" myth.

There's so much more I can write about empathy but if I did this post would be very long.

You were happy as a lark. And then one day you went to a shrink. The shrink assessed you, and then declared that you were mildly autistic. And you have been a miserable drunken sot ever since. Is that the gist of your story?

if so then you left out one important part of the story. That being: why did you go to the shrink in the first place?

If you explain that, atleast in general terms, your story would be more understandable to us all.

It's a great deal more complicated than that. I was initially told I had ADD and Aspergers, but they never told me what Aspergers was and I always just assumed it was some sub-type of ADD.

What happened is I was going through an unhappy time, but it should not have been a catastrophically unhappy time. It was like basically a bad breakup, but it should not have been the absolute end of my life. But I went to a therapist for help, and they told me that if I had Aspergers, that was, in fact, a type of autism. They went on to say it was a severe social deficiency that made me different from people and made it difficult or impossible to have normal friendships. They told me I could go to the library and take out a book about autism if I wanted to know more.

and that was... well, that was the end of the happy part of my life.

After seeing that therapist, did you get re-tested, or otherwise re-assessed, by an adult autism specialist?

Or did everyone just assume that your earlier diagnosis was correct, because you sorta kinda seemed to have a few traits?

If you did NOT get formally re-assessed, with thorough testing, it would probably be a good idea to do so. That way, you can shed the label "ASD" if indeed it's inappropriate.

Also, have you discussed with your parents the reasons why you were diagnosed with AS in the first place?

I've not actually sat for a formal test, but I've spoken to people who know and they say that I am kind of on the line and also that it would be hard to assess me for certain, because the problem is I so desperately do not want to be ASD, and I know how to answer questions in a way that implies I am not, so it would just be hard to be honest.

I did once talk to a specialist for a long time and he said he concluded that the best assessment was "Broadly autism phenotype" and something about how I clearly was reacting strongly to the word and I might be best off not going down the road of labeling it, because he thought I had a lot of baggage attached to the word, and pointed out that I always use the word "accuse" when I talk about being called autistic. I didn't realize it but that was how I phrased it as "accused of being autistic" and he said that meant he should not be telling me I'm autistic, because there's no point in diagnosing someone when they're happier diagnosed, but I feel like it's too late.

Yeah, so my parents badly regret I ever got diagnosed because they know it has caused me enormous anguish and self-hatred. They also know people have used it as an insult toward me, and it stings more than anything because I know there is truth to it, at least in part.

The reason I got diagnosed was I was being assessed for ADHD (which was called just ADD, before it got merged with ADHD) and the guy who did the assessment and administered an IQ test said that he was not an expert on Aspergers, but he thought I had some Aspergers too. At the time it was a distinct diagnosis from autism, but not anymore, which I suppose is just as well, since now it does not have a Nazi's name on it.

So it was some time later I saw a therapist because I was having some love life problems and heartache (which should have not been the end of the world, but was causing me some pain at the time) and I mentioned aspergers to him and he said it was a kind of autism, and I was pretty shocked to find that out. One of the things he said (which apparently was a bad thing to say) was that I should consider whether I might not like having friends. Basically he said people with autism are loaners and introverts (and at the time I felt very extroverted) and I had to consider whether I was kind of living a lie by having a lot of friends and being outgoing. Perhaps my lack of happiness (at that moment, which I stress, should have been situational and temporary) was the result of an introvert attempting to force themselves to be extroverted and lying to themselves about what they liked.

I was pretty shocked and started to ask myself "What if I am delusional about the idea that friendship makes me happy? What if I really do want to just be alone and solve problems? What if I am autistic? What if that's why I have problems in life?"

I went to the library after that and started reading about autism. The books I read made it sound absolutely horrible. Granted, these were 30 year old books, but some of them compared autism to sociopathy and psychopathy in the category of "empathy disorders." Others talked about high functioning autistics being "dangerous to society" and stuff like that.

As I mentioned, at this point I was trying to figure out what is the defining thing about autism. Just what is autism? That's when I read it was "lack of theory of mind" and about the Sally-Anne test which filled me with horror, because it pretty much said that was what autism was and set it apart from all other things, was that autistic did not have an intrinsic understanding of the existence of minds beyond their own, and that they could eventually "learn" this but it was not the same as how a regular person understands minds.

It's hard for me to explain the conclusion I came to about "mind blindness" but basically I thought that autistics understood minds the way a blind person can understand color. A blind person can somehow fathom that "color is the frequency of light which is also expressed as the energy state of a photon." Yes, a blind person can *know* that, but they can never understand what it is to experience color, and that's how I felt I must be with other minds. It's hard for me to put into words what I came to think (and kind of still think) about my perception of others.

Remember, above all else you are an individual, and you get to define who you are, more than anyone else does. A diagnostic label is nothing more than a temporary way of categorizing people, based on the understanding of the culture and the time period, and it will change as the times and cultures change. If it's making you feel worse about yourself, why own it? You are quite right that in decades past people who currently get labeled as mild ASD would have just been thought of as eccentric or nerdy, and there is no reason you could not simply define yourself that way now.