Post Diagnosis relief

[CaveDweller]

Just a few thoughts a month after diagnosis was confirmed.

Before diagnosis I had read that many people go through a grieving process before finally accepting their condition - Denial, Anger, Bargaining, Depression and finally acceptance, but that has not been the case for me. I feel that I went through these stages in the period between realising myself and the actual diagnosis. Aside from a little bit of confusion I just feel relief.

I self diagnosed a couple of years back then completely denied it. I had always been aware that I saw and experienced the world differently to others and struggled with things that others seemed to do naturally. It was pretty obvious to others too but I had always put this down to a mixture of anxiety and eccentricity. I had an unusual upbringing.

When I eventually came back to it and read up a bit more it was so obvious that I had the condition. I remember telling my GP that when you have a broken leg you don't need a medical professional to tell you, you just know. (It's not until somebody types a letter that it becomes official though).

I went through my grieving process between then and the actual diagnosis. Aside from a bit of confusion (What does this mean, what happens next) I feel nothing but relief. I always felt that I had to try harder than everyone else just to appear 'Normal' or acceptable. Like playing poker where the cards are stacked against you, that what it felt like as an Aspie trying to live by NT rules. Now I know that the cards were stacked I don't feel so bad about things. I was playing games I could never win.

I believe I've got to this age in one piece due to my eccentric nature, which divides people down the middle. While some people like my completely alternative view and ways of doing things, others just label. (People have this need to categorise what they don't understand. It's often ridiculous and rooted in their own ignorance I find). I've been labelled with more things over the years than I care to remember. At least now I can be labelled with what I am. I'd rather be labelled with what I am than what I'm not and I see no shame in being something I have no control over.

I've started making peace with my past and feel a lot more positive about moving forward with this important piece of knowledge. In this sense diagnosis has been quite liberating.

I'm sure others have had different experiences but for me, so far (it's early days) I feel a lot happier.

 

[Greg]

For me it was more of a feeling of relief. It finally explained what was going on with me and I could finally identify with what was going on. So all in all it was a great thing.

 

[CaveDweller]

Completely agree Greg. It's helpful to be able to identify and understand stuff that's happening.

 

[Slithytoves]

I've mostly heard of younger people going through a Kübler-Ross model-like grieving process upon diagnosis, probably because they lack perspective and experience. Since Kübler-Ross's stages were originally conceived as a model for grieving a death, I would compare a young person's experience more to a sudden and unexpected passing, throwing their world into chaos and uncertainty. ("I'm not ready for this. What will my future possibly look like?") For many older adults, it's more akin to a death that's come after a greatly prolonged illness. We may still feel a sting when we first get the news, but our grieving and confusion has been coming drop-by-drop for as long as we can remember, to the point that a wash of relief soon follows. ("I'm ready for this. My future will look very much like my past, but better informed.")

In my case, I felt no sting at all. I felt like I could breathe for the first time since childhood. I'm really glad you had a similarly positive experience.

 

[Suzanne]

Relief and even awe I would say! Oh and I am not "professionally" diagnosed, and damned well, going to fight against that, even though, a little voice keeps saying: it would be better for you, because nts like things written on paper, to believe, but I push the blasted voice away!!!

I came across the name aspergers, in a magazine called: awake. I read about this young girl who has aspergers and other than a few differences, ie she was worse than me, I could have been reading about me. But I felt embarrassed, because it is easy to point and say that is me and thus, I kept quiet.

It is joining this site that has helped me to accept that I have aspergers. My husband who is an nt seems to think that people like us, do not get that kind of thing, as though it has a high status or something! So instead he prefers to attack, rather than help. It is very hard living a life where your partner moans with how you are, but won't work along side to help but demands you learn to be an nt!!

I am not ashamed to be an aspie, but it sure does get in the way of trying to live! I would like nothing more to embrace people and get along with everyone and have fun, but inevitably I am the one looking in on all the fun and it hurts!

I long for solitude and feel jealous when I hear ones having fun and then hate solitude - a vicious circle!

 

[CaveDweller]

Slithytoves - What a great way of putting it, particularly the drop by drop idea. Also I didn't consider that age and experience offers a different perspective to that of younger people. I also feel I can breathe at last too. Great post!

 

[CaveDweller]

Suzanne - I also had a partner who continually questioned me, although at that time I was unaware of the condition, I felt that I was continually on the defensive over the way I was. You struggle enough in the outside world and the last thing you need is that kind of thing in your own home. Whether or not you need the diagnosis is down to the individual I think. For me it was just that I was really struggling with things. I had walked out on two jobs because of what I now realise were meltdowns. I was mentally exhausted and literally couldn't take any more. Spending 12 hour days with people was far too much for me to deal with and I needed it to be acknowledged that I have these difficulties.

It does get in the way of trying to live. Sometimes I feel like I am looking through a window pane at other people living life while I'm stuck outside in the cold. It's always the things that you can never have that needle you most. I think as I've got older though I've realised that most of the things I miss out on aren't really that special anyway. Also that I like spending time with others but value my solitude highly and it's just a case of finding a balance that fits.

 

[Slithytoves]

Slithytoves - What a great way of putting it, particularly the drop by drop idea. Also I didn't consider that age and experience offers a different perspective to that of younger people. I also feel I can breathe at last too. Great post!

Thanks, CaveDweller. Let me ask you this, as it's a timely subject for me. Since my official assessment, I've experienced what I first perceived as an intensification of my symptoms. I wondered for a while if I wasn't "inhabiting my diagnosis," roughly translated as "living up to it", if you know what I mean. It's a pretty common psychological phenomenon for all kinds of medical conditions and can become unhealthy. Now that it's been a while, I'm starting to think that's not what has happened; that instead, I'm simply less inclined to suppress my traits now that I know there's a legitimate reason for them. Have you found something similar happening to you?

It feels good to let myself be who I am and behave naturally, but I have found that a couple of people in my life are confused by the change, even a little resentful. That's why I've taken the time to study what's going on. I've always been an alien. I don't want to become even more of one in the eyes of people I love, so I feel the need to find a compromise. It's a bit of a dilemma.

 

[watersprite]

I was playing games I couldn't win.

This exactly is how I felt after my diagnosis.
Slithytoves, that intensification - I was wondering about that too, because I felt like that for a month or so after the diagnosis. Could it be our minds are, for lack of better terms, tasting and turning and viewing the diagnosis, one's newly "adjusted" identity, over and over again. I mean, in an effort to find the common ground and/or bridges from before - and that causes the sense of heightened symptoms. I don't know if I described that very well: but that diagnosis is a sort of journey, even though one knew ahead of time what the possible outcome of diagnosis would be, it still has newness, it is still a change.

 

[CaveDweller]

Thanks, CaveDweller. Let me ask you this, as it's a timely subject for me. Since my official assessment, I've experienced what I first perceived as an intensification of my symptoms. I wondered for a while if I wasn't "inhabiting my diagnosis," roughly translated as "living up to it", if you know what I mean. ................... instead, I'm simply less inclined to suppress my traits now that I know there's a legitimate reason for them. Have you found something similar happening to you?
.

The honest answer is that haven't spent a lot of time around people in the last month and when I have I don't think I was any different. I feel a bit more comfortable in myself but whether that comes across I don't know. I don't really want to be defined by the condition so hopefully I wouldn't try to live up to it. Thinking about it now, I would rather break the Aspie stereotype in other peoples eyes rather than confirm it. It would be much more fun to shatter people's expectations..

 

[Slithytoves]

Slithytoves, that intensification - I was wondering about that too, because I felt like that for a month or so after the diagnosis. Could it be our minds are, for lack of better terms, tasting and turning and viewing the diagnosis, one's newly "adjusted" identity, over and over again. I mean, in an effort to find the common ground and/or bridges from before - and that causes the sense of heightened symptoms. I don't know if I described that very well: but that diagnosis is a sort of journey, even though one knew ahead of time what the possible outcome of diagnosis would be, it still has newness, it is still a change.

I get what you mean. Yeah, I think that's very possible, too.

It is definitely still a change. Immediately before my diagnosis I said I didn't think it's would matter much, but man, was I surprised. It's mattered many times more than any other personal revelation I've ever had. So many things about me were different from other people; many that didn't seem like they could possibly be connected. My diagnosis broke the code to reveal a maze of relationships I'd never imagined existed. My self-confidence took a massive boost almost immediately. In some ways I'm glad it took a long time, but I have to admit that sometimes I wonder what I might have accomplished to date had I known why I am the way I am.

I don't really want to be defined by the condition so hopefully I wouldn't try to live up to it. Thinking about it now, I would rather break the Aspie stereotype in other peoples eyes rather than confirm it. It would be much more fun to shatter people's expectations..

I understand your not wanting to be defined by your ASD, and your preference for breaking stereotypes as opposed to reinforcing them. For what it's worth, I think you're fairly well protected against being defined by your condition, by virtue of the life you've already lived without a name for it. Again, that's a distinction between younger and older diagnosees, I think.

As for stereotypes, I personally wasn't identified as an Aspie sooner because I don't really fit most any of them. Not in ways most people would notice, anyhow. I just find that I no longer feel the need to constantly try to be more NT-like. The criticisms and admonitions I'd lived with for so long posed a lot of pressure I couldn't surmount. Now I feel assured that my behavior is normal for my neurology and so am comfortable just being myself. I don't play the Aspie card much, but I know I have it in my back pocket. That's been very liberating.

My own choice has been to be very open about my Asperger's. The fact that nobody but other Aspies ever suspected I had it makes me a stereotype-killer without trying.

 

[CaveDweller]

I was being playful about the stereotype thing saying if I had to I would rather go the opposite way than live up to a diagnosis. I don't think of myself being a stereotype breaker just because I have went undetected until now. The few people I've told have been surprised at first and then on reflection have been able to see it. They just haven't been able to put a name to it before.

 

[AsheSkyler]

I feel like my diagnosis came at the right time, followed by a lot of "I told you so" remarks to people who wouldn't believe some of my problems, like issues with being poked or having doggy hearing. I'd had a chance to grow up, get used to myself and find out who I was, but not so much time had passed that the new coping tricks I learned about wouldn't be that helpful since people who deal with me were so set in their ways they wouldn't adjust to it. Well, the ones that lacked the amount of common courtesy in the first place that I would need an excuse for them to play nice. "Don't touch me" and "let me wake up in the morning before asking me questions" really isn't all that difficult to demand of a person, but apparently that's on par with wanting breakfast in a silk bed on a silver platter. (Not referring to my husband or parents there. They're not morning people either. They get it.) No hope for the dirty minded and their little commentaries on my morning sickness though. To them, there will ever only be one explanation for being so ill and poor feeling the first few hours after you get up each day.

Also went through that "intense symptom" thing right after, along with a drastic increase in patience for those that rubbed my SPD wrong. It was very fascinating, like being given a new toy. Sounds and sensations I was used to getting became a lot more interesting. It was almost like being a kid again when you first hear or feel something new and want to play with it a few times to familiarize yourself with it. And now I'm used to it again since the novelty has worn off and I'm just as grouchy as ever about somebody touching me. At least now I can specifically tell them "grip firm, don't brush, but if you hit me hard enough my heart skips I will be skipping you across the floor". And they say Aspies have no middle ground!

As for identifying as an Aspie, eh, that took a while. I still don't really. With my accent, it always comes out "ass burger" or "ass purger". I just say I'm autistic for simplicity's sake.

 

[CaveDweller]

The 'intense symptom' thing you mentioned is interesting as I've never heard of it before. I'm not sure if I have this but I have become more aware of the sensory thing since diagnosis. As I have no other frame of reference (I've always been like this), I just assumed everyone was like that. Now I know this isn't the case I'm more aware of it.