Do you feel that you would be better off if you didn't know?

Post Reply New Topic

I wasn't diagnosis'd until November 2012, I am in my mid/late 30s. It took me close to 9 months to actually accept the diagnosis. However now that I have accepted it, and that there is no putting the toothpaste back in the tube, you know I would probably be in a much better position to deal with everything had I recived the diagnosis early on and had proper therapy to handle everything rather than just hide it all behind a mask.

Yes and no, well I really don't know.
I don't actually know if I really have enough "aspie" traits to be on the spectrum, but last year I started researching aspergers, just randomly on one of my internet binges. I found myself relating to so many of the traits described and it was quite an eye opening experience for me at the time.

When I was in year 4 there was this girl that I sort of felt an affinity with, as she was shy like me, but then one day in the space of a week she suddenly came out of her shell and became more social. When I saw that happen to her I was sad due to the lost camaraderie (which was probably just one sided), but it gave me hope that it would happen to me. Since then I've held onto this idea that one day I'll suddenly become really good at socialising, but finding out about asperger's shattered this idea.

I can't really tell if I would have felt worse about myself now without knowing about the existence of aspergers. It has made me realise some things I do that I was oblivious to. Although it's mainly just given some kind of explanation for all the things I hate about myself and made me worried that I won't be able to change those things.

I did not know. I just found out a year and half ago and I am 40 something even though a lot of times I feel, think, speak, and act like I am 12 or even younger. Finding out and particularly finding WP has helped me tremendously. It is very difficult to be "different" even when you are very "High Functioning" like I am. Different is hard enough but when you have no idea why you are different and when people, including your family, treat you or respond to you in ways that can hurt you rather than help you because they don't understand why you act like you do, it can be really traumatic and that can affect you for life.

But once I found out it was like a huge weight was lifted because now I understand that I am not a freak. I also don't know anyone else who is on the spectrum personally, not that I know of anyway, so I always felt very alone like I was the only one on the planet dealing with my issues. And most of my friends and family don't have much. if any, experience with anyone on the spectrum so none of them understand me really. And coupled with Misophonia, which no one had ever heard of, so no one had any concept at all of what that was, it made it so much worse. But finding WP and realizing that there are so many people who feel and think like I do was like a light shining through a pitch black room. It really makes a difference and it is very powerful and wonderful. And now I am teaching the people in my life who are open to learning about this and I hope that it is really helping them as well.

I think you are lucky to have found out at a younger age because your life growing up with your family is better. They can understand why you do what you do and find resources to help you. Imagine what it would be like to feel all this stuff we feel but yet have to do it completely alone since your family doesn't get it and then even being punished for stuff that is not bad but just a normal AS or Misophonic reaction that you can't even control. It was so difficult for me because I could never understand why my siblings got help when they had ongoing issues but I didn't. Their ongoing issues were more obvious like allergies and stuff like that so it was a lot easier for my parents to know that they were "sick" and get help for them. But with my high functioning AS and Miosphoina everything must have looked like a behavioral problem so they had no idea that there was something physiological going on. And like Misophonia, Autism is a relatively newly recognized syndrome.

Even just twenty years ago people were not aware of it as they are now. Now it is very common for someone to say I know someone on the Spectrum or I am on the Spectrum and people don't even make a big deal of it. But it was not very long ago that many people had never even heard of autism and many people who had heard about it knew very little about it. So a parent with a very high functioning Autistic child would not have known to have that child tested because they would assume it was from bad or shy or just odd behavior.

It does not make what I actually go through any easier at all and sometimes it can be hard because people sometimes tell me, "You are just using AS or Misophoina as an excuse to not do something." I used to get that all the time growing up. Of course they did not say "AS" or "Misophonia" because no one knew what it was but they would say, "You are just making up this pain so that you don't have to do this or that or because you want attention." And then I'd feel like I was being bad because they said that. So even now that I know, I can still feel that way if someone says that. That can be hard because sometimes I believe them and then I have stress because I don't want to do that so I have to always try to make sure that I am not doing that.

You also mentioned that knowing can sometimes give you an incentive to not try as hard to act normal. I completely understand what you are saying. Sometimes I feel that too especially now that I know. But honestly, it can sometimes be very exhausting to try to act and feel and think "normal". It can be a lot of work. I do try and I don't want AS or Misophonia to be an excuse to not try and I will always try but sometimes I need a break and before I knew I had this it never felt like it was okay to take a break and just let myself be me without having to try to be "normal". And if I did need to just be me I always felt like I had to hide it and do it in secret. Now if I can't act "normal" or if I am exhausted and drained from trying and just need a break I don't feel guilty or bad about having to do that anymore. I still feel like I have to hide it a lot though because not everyone understands or even believes me if I tell them I am on the Spectrum. And you can't just go around having something like a full meltdown in public.

It can be a lot of pressure if NT's expect for us to act like them all the time. Yeah, we can try and I think it is good to try to fit in sometimes, but sometimes it is really exhausting. And if you are an NT reading this, imagine how hard it would be for you if you had to try to act, think, feel, respond, perceive, and process things, like someone on the spectrum all the time in order to fit in and feel loved or accepted, and on top of that you had to deal with nearly constant sensory and emotional overload. I truly doubt that you could do it very well for very long. It would be just as exhausting and draining to you especially if you did not know why you had to do it and if you being punished or reprimanded for your survival coping mechanism, or for your only way to release the enormous amounts of stress overloading your system. Imagine if you were always being told that you were weird or unrelatable and either could not make many friends at school or, even worse, lost friends when you naturally acted like the NT that you are. And if your immediate family did not understand and treated you in a difficult way when you were having your "NT specific moments", even though you knew deep down that they loved you and only wanted the very best for you, you would feel completely alone, helpless, and very confused and sometimes even guilty because you were really trying to be "good" but no matter how hard you tried you never really seemed to be able to do that. But the added stress of not knowing why I go through it and the stress of feeling completely alone in it is no longer an issue and that is HUGE.

I am glad that you did not have to go through that your whole childhood. Most parents really love and devote themselves to their kids and do their best and usually mean well but ignorance is not always bliss.

I'm torn on this.

If I had been diagnosed at a younger age (early high school or earlier) I almost certainly would not have made it to where I am today because I may not have learned the same coping skills. Also, it's possible that because people may have treated me differently because of it I may not have received the same opportunities that I did. Then again, maybe I wouldn't be having the miscommunication issues that I am currently having with professors if they actually realized I am autistic and have trouble correctly explaining things verbally.

When I think back to high school, I remember one particular instance where I had done something to offend someone (don't remember the details of what, but they got pretty upset with me) and went home wondering if I had some kind of mental disability that no one had the decency to tell me about. (Interestingly, I wasn't entirely wrong there...). I remember thinking about wanting to kill myself over it because I was upset over the fact that I was always having problems with interactions and didn't know why. Thankfully, I learned about autism not too long after that, and, even though I was in denial about my having it for a while, I was glad to know that there was something that could possibly explain my problems. It is entirely possible that I would have followed through with killing myself if I hadn't figured it out.

So, in some respects it's a good thing that I didn't figure it out until I was older, but ultimately I don't think I would have been better off if I didn't know.

No.

Absolutely not.

Finding out this year I am an aspie has given me a new perspective on me and my behaviour. It has helped me understand what I am like and why I am like that. This understanding has made me happier and helped my partner as well as we can now discuss and understand my past behaviour.

Knowing what I am, means that I am no longer just an intelligent, socially inept and lonely weirdo, but someone who has issues, but the issues are explainable and I am not the only one.

My childhood was hellish because it was believed by everyone, myself included, that my failure to properly engage life was the result of personal failings of will or character. It is an incredible relief to think that the framework of my life was fundamental, in that I now feel validated working within that framework and making the best of it. In other words, try to emphasize the assets (which are real), and it's okay to steer clear of the liabilities. And ignore people that push me to wade into unworkable situations "for my own good". So in this case, knowledge is a very good thing, as far as I'm concerned. I'm happy and productive in ways that I could never achieve in my ignorance.

I actually only managed to get my diagnosis confirmed a couple of weeks ago but I'd suspected for months after my GP raised the possibility. Now that I have the diagnosis, I wish I'd known about my condition years ago. When I was asking her about my early development my Mother confirmed that she had suspected there was something wrong from about the age of three, but never followed through by attempting to get a diagnosis because she was advised by those around her that it would be wrong to have me labelled. I don't see Asperger's as a negative label though.

Prior to being diagnosed I'd managed to do quite badly at A levels despite an incredibly high level of achievement at GCSE level. A huge part of that was being disorganised and often getting caught up in focusing on my interests rather than what I needed to do to succeed academically. I think at the time, I was so confident in my intellectual abilities I thought I could just breeze through, I didn't really have an objective understanding of my strengths and weaknesses. If I were to go back into that situation with the diagnosis, I could have directed myself more towards academic areas which suited my interests and got help with organisation rather than floundering trying to push through on my own.

I think as people with Asperger's we are prone to relying on ourselves and not seeking out the help of others when we really need it, I know that I was, In fact I could probably have been diagnosed sooner if I had reached out for help sooner. But what I've learned on my journey so far, is that everyone has strengths and weaknesses, Neurotypicals and those with Asperger's alike. Sometimes we can't do things by ourselves and we need help to pull through, and that's nothing shameful,, everyone needs a little help from time to time. We all have our strengths too, something only we can contribute to this existence, if we can find it. Co-operating and balancing out those strengths and weaknesses is how our species has made it's way so far.

I'd have done better if I was diagnosed earlier.

Not knowing I did nothing to fit in. I didn't gain coping skills. I lived my life and others lived theirs and it was just like that.

I was fine. I felt fine. But I didn't get help.

Then things got too much suddenly. I couldn't handle it all. But I didn't know still.I was still just being me.

I didn't have my diagnosis but we had a professional say it was likely so we had an idea of where to go on.

So I got help. But it was after everything was falling apart.

And only for a little, because I wasn't diagnosed so nobody else would help.

And sensory-wise am a wreck. I have severe sensory issues but had no help until recently because I thought it was normal.

No

This time last year, I didn't know.

I was confused as to why my life was as it was. A diagnosis, and the subsequent research into Aspergers has given me the "what" and "why". I feel a lot better knowing the causes of my anxiety and social deficits. I can work in these areas and improve my life.

I know what I was like before I was diagnosed and I know what I am like now. The answer is no. I was not better off.

This is a meaningless question because you're postulating a nonexistent choice.

The choice you're postulating is this: having a label, verses having no label.

In the reality the choice is the following (a) being labeled autistic, and (b) being labeled a neurotic sick lazy friggin ret*d.

So the real question is "which do you prefer? Being told that you have one thing wrong with you (ie that you're autistic), or do you prefer being told that you have EVERYthing wrong with you (that you're a sick lazy, neurotic, psychoitic, ret*d).

If you're speculating that you "would be better not having known" then you are in effect saying that you prefer the latter choice- being labeled a "sick.....".

So why would you prefer that?

A bit of a rough answer ^

Maybe he is one of those who believe " Ignorance is bliss",

but even Adam took a bite of the apple from the tree of knowledge.