Late Diagnosis Anger?

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Anyone feel this? I do lately. Angry for years spent with no support, only criticism. People are more understanding of me now that they know of my diagnosis and I appreciate that, but I still find myself boiling over sometimes in resentment at the year spent being encouraged to feel like a failure. And to a certain extent I still feel this way as it is so ingrained in my psyche. I have to force myself to remember what my challenges are and to not become angry with myself for my limitations.

I did feel like this a little, at first.

I moved away from it by realising that being diagnosed late meant that I'd had the opportunity to be a neurotypical person. That's a chance that many diagnosed with autism simply do not get. I have been able to achieve things that most autistic people have grown up believing might never be possible. And I've had struggles, but I now have my answer and can move forwards with it.

The part I struggle most with is that I would love to have grown up with everyone knowing I was autistic. Very few people know now, because it's not the kind of thing you just 'announce'. I want to increase knowledge of my autism organically and naturally, but at the same time I wish there was some way just to get it all over with in one go!

I wasn't neurotypical before I was diagnosed, I was just undiagnosed. Everyone tried to tell me that there was nothing wrong with me because I looked normal, but there has always been something wrong with me. I don't quite understand your comment. If you're autistic you're autistic; being diagnosed doesn't change who you are, it changes how people perceive you.

Sorry, let me explain better.

Presumably, you went to a 'normal' school. It was probably assumed that you would grow up through the schooling system and move into employment. That you would live independently. That you might get married, have children.

However much you may believe that you've 'failed' at any of that (as I have, in parts), I figure at least we had the opportunity to try. And I don't know why this brings me comfort, because there is a very good chance that my life would have been infinitely better had I been treated as autistic from a young age, but I still feel that it was an opportunity that many diagnosed younger would give anything for. The opportunity to not be diagnosed as having a neurological condition from a young age. The opportunity to at least try and see how things go, without your parents thinking (as it seems many do, nowadays) that a diagnosis of autism means that the child needs to be mollycoddled, will never live independently, won't find love...

And, like I say, that's not to say that a late diagnosis is anything really to be happy about. It's not to say that the alternative would have been worse - I suspect it could have been so much better. It's not to say that if my daughter turns out to be autistic, I'd leave her waiting for her diagnosis (I'd want it as soon as possible, if it meant that she got the support and accommodations I needed but didn't get). But, the fact that I had opportunities that I might not have had if I were 20 years younger does help to reduce the anger.

Yes this was the pattern I followed. I did fine with schoolwork, even excelled at the end of high school, but I cracked in university. My mother and her fiance wanted to move on with their lives without me and I had no friends or other family. I ended up in a bad relationship with an older man that lasted for 9 painful years.


It did not go well for me.

But one never knows what never was. It's like the Butterfly Effect. Change one thing and a million others change as well; so who knows.

I should feel a sense of peace now that my condition is recognized and I am receiving support, but I also have a constant sense of fear which I can't seem to shake because I know how bad things can get and I'm afraid they will become so again.

I was thrown out of public school after 2nd grade, a private school accepted me for 3rd and 4th grade and my public school readmitted for 5th grade and I had normal schooling through college. I had labels "painfully shy", "easy target" "underachiever" which were descriptively accurate but still wrong, and labels which were just wrong such as "homo" considered the ultimate insulting thing you could say to a male back then.

Dispite all of that I am very happy that I was not diagnosed with Autism after 2nd grade in 1965 because I would have been institutionlized in the psych ward, had all sorts of experiments done on me, maybe lobotomized, chained down to the floor etc. My mom would have been stigmitized as a "refrigirator mother" believed to be the equivalent of a Nazi concentration camp guard who never wanted me in the first place and been told to have years of therapy to find out why she hated me so much she caused me to lose all human emotion.

I would also take what I had to deal to the equlivilent me bieng diagnosed very young in this era. Today I would likely have helicopter parents who would be too scared to let me do anything by myself. I would be reading how endless money, time and effort is bieng spent to cure me or gene edit my neurology out of existence. I would read how the incoming President thinks I am the way I am because I was poisened. My neurology is a very popular insult. I would be recieving 25 to 40 hours a week of behavioral therapies designed to make me indistinguable from my peers. At a young age I would not be mature enough to handle all of that. At best I would be a fragile special snowflake with suicide ideation but I would probably be just plain old batshit crazy.

The way it actually worked out bieng diagnosed at 55 has been no picnic. It is disturbing to read all the bad stuff about my neurology. But at least I am mature enough to cope with some of it. At least unlike generations past and many of my peers I will die knowing who I am.

Sure it would have been nice to have been diagnosed young with my autism bieng understood and properly dealt with. That did not happen and probably won't happen for our age cohort.

Yes but I think that most of the anger surrounding my late diagnosis has now passed as my focus is on getting answers to my physical health problems that are also LONG overdue.

I was particularly resentful that it took until the age of 29 and my own initiative to get diagnosed despite having met with a ridiculous number of doctors since 2005, including those who years prior agreed, but failed to send me to get properly assessed, so it was never included in my medical file. Without a formal diagnosis, I couldn't get any understanding from my family whom I am dependent on, nor from any other healthcare workers.

I'm still wounded from a lifetime of desperately seeking help for my problems (which I perceived to be physical, due to alexithymia) - and being told nothing was wrong with me. That it was 'all in my head', and I was imagining things.

But I've come to appreciate that I did have a chance to try to succeed as a 'normal' person. And my overwhelming, across-the-board failure in career, marriage, and friendships helps me to know in my heart, what younger autistics can only wonder about. I know for certain, if labeled 'normal' and given a chance, that I could not have succeeded at any of that. So it's easier for me to accept my limitations, and not be plagued by dreams of 'what if'.

I forgive the doctors of my past, for not knowing I was autistic, in a world where Asperger's wasn't even a diagnosis. And I'm grateful that now I am finally able to get the help I need.

I think it's the transition from "not trying hard enough" to "never mind, you can't do it anyway," that is messing with me. With the added twist that I am now more functional than I have been before in certain ways because of the medications I take. For example, my fine motor dexterity has always been poor and effected my coordination in both sports and arts. However, my abilities to draw and "stay within the lines" have been greatly improved by taking gabapentin.

I wonder about the value our culture gives to creativity and other successes if our abilitites can be manipulated by chemistry.

No matter how much medication I take or don't take, I'll never be able to draw worth a damn.

What sort of drawings do you do?

I have just turned 60 and am unlikely to ever be diagnosed with aspergers, or similar, although I have had problems all my life.

Do I feel bitter?- yes. I strongly feel that I could have done better with my long term(40+ years) mental illness if I had had help and support for the aspergers or similar(inc learning difficulties). Instead I had a bad relationship with the mental health team.
When I sought more help I was branded awkward,demanding and troublesome.

More help and a lot less abuse could have made a significant difference. As it is the best I can hope for is to stay at the rather limited level I am at. It is too late for anything else.

I could have used some help, but I get why that didn't happen. I think my bitterness comes from the negative feedback that I received from just about everyone when I was growing up, with the only reason for it being that I was doing something wrong, apparently willfully. I'm not saying I was a dream kid, but it would have helped me to have more positive engagement from others in my early life.

I feel what you're saying.

I got mainly negative feedback as a kid, too

It's hard to recover from.

I have a vast untapped well of anger about this and other health issues.

I was made to feel that I was just not trying hard enough, when the issue was asthma.

They made me feel like my stims were the signs of a degenerate with no self control and my executive function problems were laziness and carelessness. It's strange and frustrating to simultaneously get praise for your attention to detail and condemnation for carelessness.

Nothing to be done about it now. I could dwell on it so easily, but it would only make me angry--and to what end? No one cares. Probably few remember.

Those negative feelings are there, but I try not to let them surface too energetically.

I am trying to reconcile them as I don't like them looming in the background.