Diagnosed when older? The process of accepting the dx?

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I am interested to ask people who have been diagnosed when older, how they have coped or are coping with an acceptance of the diagnosis. Initially I was over the moon and relieved. OF late, i have moved into a place of utter grief and depression about it. I am realising that my whole life i have had this naive and rather childlike view that "one day I will make sense of it all and one day i will click with people" and "one day this feeling of being disconnected from others" will be gone. I have also lived in the belief that all my issues have been surmountable and that i would be able to change and grow with time. But with my diagnosis, i am in fact realising there are a great many things that will never change, and that I am having to learn and accept that this is how it is for me.

How have other older aspies found this process to be? Does it get easier?

I completely understand where you are coming from. I wasn't diagnosed until recently either and when I got the confirmation, it definitely explained why I was "different" and struggled during my childhood (and even still, in my adulthood). I was relieved because of finally getting an explanation. But I also experienced mixed emotions later on. And my son is also under the spectrum... but because he is getting early intervention, hopefully he will have an easier time coping with life's demands than I did as a kid.

thanks lioness. interesting to hear you have gone through a similar process.

You're welcome and you are definitely not alone in this, it would be interesting to see what others have to say who have gone through the same process.

Yep, id say its normal.

I learnt of AS a year and a month ago... first 4 months were 'AWESOME I KNOW WHY' and got into trying to catch/improve/better myself now that I knew why things were the way they were...

The next 4 months were rather depressing as nothing really changed. 'I know Why but im still screwed... wish I hadn't found out' kind of thing.

These last 5 months have been rather exciting with all the things I set in motion the first 4 months now slowly working themselves out. Not much has changed as to the way I am but how i'm living is certainly changing very dramatically very soon.


Hang in there, plan and execute and then be patient. It's like tetris in a way.. if you start forcing the pieces to fall faster you end up with a pile you can't control

Well it was a good thing, because it answered the "what's wrong with me, what did I do wrong" questions from way back. It wasn't my fault, I did the best I could, end of story.
Sure sometimes it's a bit depressing, but less so now that I can understand why.
Does it get easier? Not for me, but understanding is better than the "what the hell is wrong with me anyway" frustration.

yes, thank you. There is also this vast internal emptiness, because so very much of my life i have spent TRYING to fit in and TRYING and HOPING in the ways and manner i describe above. That's dissipated, and it is as if i will slowly need to allow all the pieces to realign of their own volition. I do feel relief, but also a sense of hollowness and dread because so much of my mental faculty was spent trying to adjust to the people around me and trying to fit in. very strange.

I understand, I really do. But let me tell you something, I am accepting the fact that I am not like the majority and never will be.. the more I am accepting it, the less I care. I would be lying if I said it wasn't a process.. it's a long process to get to that point of acceptance but in time you will cherish your gifts and be more tempted to say "f*** you" to society! It's normal to go through that process.

I've known for a few months (NLD, self-diagnosed) but I'm still working on acceptance. I think it'll take me years.

I was shocked when I first found out about AS at 56, and then the relief started that I wasn't some mysterious sort of crazy. Later I wallowed in the pain and guilt of all the relationships I had wrecked because I blundered through promising adult emotions but having only rudimentary ones to offer.
At age 58 I was finally DXed with AS, Anxiety and Chronic PTSD. I have become very embarassed when I contemplated my past behavior in social situations now that I see them more clearly than I did when I thought I was right about everthing and everyone else was wrong. I am so grateful for WP.net. I got to write out all my pain and passion and injustice over my life.

I found these "stages of grief" and wondered if they would somehow apply to the progression through a life shaking DX.

Merle


7 Stages of Grief...

1. SHOCK & DENIAL-
You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT-
As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs.

You may have guilty feelings or remorse over things you did or didn't do with your loved one. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING-
Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion.

You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair ("I will never drink again if you just bring him back")

4. "DEPRESSION", REFLECTION, LONELINESS-
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair.



5. THE UPWARD TURN-
As you start to adjust to life without your dear one, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH-
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one. You will start to work on practical and financial problems and reconstructing yourself and your life without him or her.

7. ACCEPTANCE & HOPE-
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.

thanks sinsboldly. it is very apt.

i also relate to what you say about trying to approach the world with adult emotions but only having rudimentary ones at your disposal!

For me it was kind of like a light slowly fading in. So many things became clear.

Also, I don't feel depressed about not being able to change/improve/whatever, firstly because I am happy being the way that I am, and secondly because I know I can improve (and am improving). AS is a developmental disorder - this means that development in certain areas occurs abnormally, not that it is arrested altogether. Some times it is harder to learn about the things I need to find out about (such as social skills) because the environment I am in is not a good fit for me, but now that I am in a really good environment, I'm learning loads and gaining awesome skills. Although I still can't use nunchucks, or hunt wolverines. I think that the condition is only static when the environment is bad. Does that make sense?

Hi Millie,

I so much relate to what you're saying. I got diagnosed at 50. I'd been in traditional therapy on and off for about half of my life before getting the diagnosis. The core of most therapy is that if you keep working hard, you can work through anything. I have worked through a lot of my childhood abuse issues, and conventional therapy, a spiritual life, and 12-step groups have helped me enormously.

The problem is that so many of the AS symptoms also look like PTSD symptoms. I'd been working on them as though they are solvable. For instance, the panic I get into around people and being out in the world always seemed like a textbook PTSD response. I have been very married to the idea that all I had to do was keep working on myself and someday those responses would go away. Now I realize it's not true. It's the AS, not the PTSD. There was abuse, but it never seemed like a sufficient explanation for the absolute failure I've been at navigating most social situations and just being on planet earth. I'm glad to stop banging my head against the wall trying to be someone I'm not, but it's a huge, confusing, grief-filled, mind-blowing adjustment. When I see another AS symptom pop up, I'm having difficulty not going to that "someday, if I work hard enough, this will get better" place. I'm so conditioned to seeing everything as "onward and upward" that I lose my ability to just sink into myself and accept the reality of the situation.

In other words, I keep dancing between feeling utterly relieved by the dx and completely overwhelmed by it. Sometimes, I feel relieved that I'm an Aspie and an artist and I can stop trying to be everything to everyone. Other days, I feel how impaired I am. The cognitive dissonance between who I thought I was and who I really am is blinding sometimes. My husband is very helpful on this score, because he loves me for who I am, not for who I want to be, and he keeps telling me that he just wants me to be myself. It's good to have his perspective. It's also very helpful to be on WP and be able to work out some sort of new identity for myself.

Maybe the hardest thing is that this whole diagnosis hit me in the middle of mid-life stuff--my daughter getting ready to leave the nest, my concerns about what to do next, and the never-ending question of "what have I really done with my life?" that is very common to most people in mid-life. I've got all those conventional questions plus the knowledge that I'm not at all who I thought I was. It's a great opportunity or an enormous burden, depending on the day and my mood.

I agree with this post above. And though I am only self diagnosed, I thought I´d chip in my "2 cents" again.

When I discovered AS a little less than 1 year ago, I felt the huge relief that many have talked about. I was also in a certain point of my life where I had worked out some of my issues already- meaning, I had already found some self acceptance, which I hadn´t had before, due to years of being interested in, and reading about spirituality. In addition, I had resigned myself to the fact that somehow, due to the fact that I was "different" from other people, I would probably never find the relationship that is sort of expected of women- (and am not even sure I want the standard thing)- nor would I have the children I wanted. These were tough things to realize; namely, that the life I was living was not the life that I had expected! But since I had already accepted these issues on one level, the AS didn´t change much; it only explained WHY, and that was a great relief. Since I made this discovery, I also feel better about myself, as I realize now that I was working "against something" all these years, and I haven´t done half badly. Mainly, I realize that I am probably more intelligent than I ever gave myself credit for...(I even thought my social lapses were due to a lack of intelligence, or lack of observation).

This doesn´t mean that all is rosy. I guess now that I am finally acutely aware of the AS behaviors, I have this idea that I should be able to control them, and I get irritated at myself- sometimes to the point of self hatred- when I notice I am doing something "AS-like", but I can´t stop it. I´m sure we all have to watch this kind of thinking, and give ourselves a break. It´s hard, though.

I agree that environment plays a part, too. It is important to be surrounded by positive, supportive people....this was another change I made a long time ago. I also believe in some neuroplasticity; in your case, I would try to stay away from the feeling that you can´t change certain things, ever. You definitely have to give yourself credit for what you have accomplished, give yourself a break about certain things that you experience, and realize that you don´t know now exactly what the future will hold. In another words, try to keep a balance. Things don´t change overnight, and some things may never change. Accept yourself where you are at NOW: and look positively for the future. Remember, changes can be made at any age.

I´m saying these things partly because I´m wondering if things really would have been better if I had been diagnosed in childhood. I tend to think, no. I think self knowledge in adulthood is absolutely wonderful- it would have been nice if it had come sooner!- but if I had known when I was too young, I think I would have "stopped myself". I might not have accomplished many things that I ultimately did accomplish, in the end. All I´m saying is, don´t let the diagnosis "stop you".

This is what I meant when I said it'll probably take me years to reach acceptance. I'm so conditioned to blame myself for not having tried harder, that I go there automatically and give myself hell before I remember 'Oh right, this was my NLD, nothing I could do about it, I'd forgotten'.

Today, like most days, my boss called me in to yell at me for some political blunder I made last week that was against her personal interests. In those moments, when the environment doesn't know what NLD is, nor does it give a damn what your neurology makes you do, and you're among competitors dying to see you fail, all alone and disconnected from WP for the next 11 hours, and without a friend to call for a quick reality check, it's practically impossible for me to accept myself philosophically instead of blame myself that I should've been more careful, and thought more about what might be the implications of my actions. It's like NLD doesn't exist during the day on weekdays; at that time ít's just me and my blunders and my inability to make a living. And the kind of blunders I make, invariably look like lack of caring to make an effort, even to me.

This is why last week I posted a thread about how you're supposed to live with the new knowledge. What am I supposed to do / say, when I'm called in for yet another political blunder? "I have NLD" is out of question, I'd be fired on the spot for admitting to a brain limitation. Say 'sorry' and shrug to myself? Fret about losing my job, but instead of blaming myself wallow in self-pity for not being able to survive financially in this world? In those moments, I'm really puzzled and don't know what to do. Promising the boss and/or myself that I'll be more careful next time is idiotic - since now I know that my social blindness will not disappear with more careful attention. Blind is blind - no amount of effort will make me see the nonverbal expectations of my bosses. And they'd never put them into words, of course, because it'd compromise them.

So how can you accept the existence of something that is only on your own mind, because nobody else knows about it? The only person I told was my old therapist, and she, of course, dismissed it, saying she's not computer literate and therefore never heard of AS, and much less of NLD, and she doesn't believe NLD has any influence in my life, she still believes it's all about me making more efforts to fit in.

For me it's different, in that I kind of knew and accepted my autism from childhood even though I was only able to get a diagnosis at age 32. For me getting a diagnosis was about getting other people to accept and come to terms with my reality, since their not doing so has always been in my way.

Also, I seem to be lower functioning than others on this thread in that I have spent most of my adult life on welfare or in poverty. I kind-of knew that I wouldn't be able to hold down a normal job and support myself ahead of time, too, though I resisted that one for a long while because of the super high price of being unemployed.

How you feel may depend on how high functioning you are in work vs personal life relative to others on the spectrum/not on the spectrum, since the loss you experience will depend on level of functioning (which is sometimes obviously very low, sometimes not). Also, it may depend on your own personal level of intrapersonal intelligence. I'm not sure about these - just speculating.