mid-life diagnosis make you feel cheated?

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It's about self-knowledge, not just diagnosis per se. Many WP members came to greater self-knowledge of their AS selves through discovery, not diagnosis. For others, the process was the reverse, diagnosis opened their door to self discovery, and for this group, that self discovery sometimes comes as a great shock. The self-discoverers are not so shocked, for as many of them relate, they knew something was different for them all along, but not what that difference was.

Perhaps then for those who were in the "never suspected I was different" group, there is a much more difficult adjustment process once diagnosis finally occurs, and it probably tends to occur at a later age and stage for many.

Hmm, it's not quite that clear cut.
I've known I was. Different from since I remember myself, I had seen multiple psychiatrist before being diagnosed due to difficulties with living, anxiety, depression and such. I have had multiple labels; avoidant, schizoid etc. None of them spoke to me or led me on a path of self-discovery. Then after some years of stable mental health I again start suffering from anxiety and depression and with it yet another psychiatrist who said within 15 minutes "yes you have anxiety and depression but there is something else also wrong".
So for a few weeks while he was analysing I was shifting through the DSM wondering what personality disorder he would decide to stick on me and what kind of pharmacology he would like to prescribe for it.
Then he said Asperger, I thought he was certified insane. Seriously I thought he was completely bereft of his wits. He asked me to read up on it and since I've always thought that the psychiatrists are more insane than us I thought I could give it a try just as all the pills in the past. So I read Tony Atwood. I'm not an impressionable person, I've read up on all the personality disorders both those I've been diagnosed with and the others and I've never found one that actually fits me. Then I read Tony's Aspergers and frankly somehow about me there. It was an absolute revelation, someone actually knew how I was and how my childhood had been and what I found difficult etc. I never considered Autism before then. Never ever. That does not mean that I didn't think I was different beforehand or that I hadn't tried self discovery or to work through my problems.
This is really why I feel cheated, if I had known earlier then I would have been able to develop more effective coping strategies sooner and had a more stable existence, but it's certainly not for want of trying.
Frankly I heaven't yet met an autistic who did not know that they were different before being diagnosed later in life and who have not spent a humongous effort trying to adjust to the confusing world they find themselves inn.
The reason for so many late diagnosis is because when many of us were young they were not diagnosing autism except in extreme cases or parents did not take us in to be analysed. It's only in the last few years that they have started diagnosing it in adults to any extent. Most psychiatrists had limited knowledge of it and never considered it for adults. So when we grew up we had hardly any hope of accurate diagnosis even when sat in front of the experts.

Like you, reading Tony Attwood was the great aha moment for me in my discovery journey, so in my 60s I came to realise that I had always been a person on the spectrum, knowingly or not.

Prior to that I had always thought my differences were idiosyncratic personality quirks - apart from the hypersensitive hearing which was accidentally discovered much earlier (when I was a subject in a university study of sound perception). I just could not explain this to my own satisfaction. Wrong Planet put this into perspective for me eventually, along with the everyday experience of various AS phenomena - as lived, rather than as observed. It seems strange now that I lived half a century as a very well read and educated person, and yet knew nothing about Aspergers Syndrome.

I find it hard to be angry with others, because the information was just not there - not for them and not for me. I feel very sad for people who sought clarity from ignorant psychiatrists who misdiagnosed them as mentally ill or personality disordered because the practitioners knew no better. This ignorance seems still to be very widespread, though slowly there is some progress.

I am grateful for the work of groups like GRASP who are dedicated to putting the truth out there and confronting the myths spread by certain charities.

It is an interesting one.

The major feeling was probably vindication. This came about from having had a suspicion arise, do the research which seemed to support the suspicion and then have the conclusions validated by the person who did my assessment.

Cheated ? I think the word would be a little two strong. For some areas it would have been nice to know my profile was autistic as I would have approached one or two areas differently and been much more at ease with the sometimes solitary or eccentric ways I spend my spare time.

I actually appreciate not having been given a label when I was young; looking back that would have created a risk of living down to the label and some of the achievements I have had in my professional life would not have happened. On the other hand, knowing the cognitive profile and the attendant blind spots in "Exective Function" may have helped avoid one or two Verbal Warnings earlier on in my working life.

The possibility of being Autistic only occured to me aged 51 with assessment confirming it age 53 so it is more an older age rather than mid life diagnosis. It vindicates decisions made some while ago regarding how much I fed my pension scheme and the tradeoffs made with amounts versus terms and conditions as knowing the profile now and observing more closely the stress points, I have the information to guide the decision as to when I give my notice for full time work.

I found out 5 months ago as a result of having my son assessed. We are like two peas... So I am self-diagnosed, but it is painfully obvious that I am an aspie.

My marriage of almost 17 years has had its challenges, but yesterday it blew up completely for the last time (and drove me to WP). Knowing about my Aspergers, I guess, has confirmed for my wife that our marriage will never improve.

Cheated? In the sense that I wish I had beed diagnosed earlier? Yup. If I had known 18 years ago that my ASD would have been so hard on my NT wife, I would not have proposed. Cheated in the sense that I would willingly swap my ASD brain for even a lame NT version? Yup.

I don't know if knowing at an earlier age really does help in the long term. I fear for my son. I don't want him to go through the loneliness and isolation. I want to believe he can find a life partner. I will be doing everything I can to help him find someone who will understand an love him.

I have stated elsewhere on WP that I believe that informing autistic 'tweens about their diagnoses would generally be a good thing (it is a good age to discern between telling everyone and using discretion). I wish I had known then. It would have been far more humane than letting me accumulate decades of self-loathing in the professional world where I was frequently ridiculed, chastised and dismissed.

I knew about classic Kanner autism when I was a teen, and believed that I was probably less autistic than that. But, while I had heard the term "Asperger syndrome" many years later, I hadn't a clue about it, and asked a friend to define it for me. That knowledge, and my completion of the AQ screening test, convinced me to pursue a diagnosis. If I had known about myself earlier, I could have accommodated it better. The resulting social isolation and humiliation was horrible.

Welcome to Wrong Planet. I wish it were under better circumstances.

Obvoiusly I do not know you or your wife or your relationship but I can say this, if she has decided Aspergers means you are hopeless or can not handle adult things like relationships you do not have to think that way. When you read about Aspergers you are reading about the bad things because Aspergers is a medical diagnosis. Medical diagnosis are a list of symptoms. But there are good sides, or to put it more accuratly "it's complicated". There are ways to cope with, ease, live with Aspie "traits". It is not easy. It took years to get you here so it is going to take time to get yourself in a better place, 2 steps forward, 1 step back and yes sometimes one step forward, two steps back.

Feel free to ask anything here no matter how embarrassing, or just vent if you need to. Chances are a number of people here have gone through the same or similar things.

Yes, at first very much so. There is some truth in the expression, "what doesn't kill you makes you stronger." As long as in the end you figure out what's important in life, and then come tell me. I'm 35 and found out 2 years ago. I feel like this world is some kind of training ground and the universe is giving me what I need to fill some roll in the future.

I relate to this in all points. I new at the age of 36, late, but not too late I think it is never too late, and never too early.

Before you are diagnosed, you don't know if you are clever or disabled. It is extremely confusing. You think everybody is wrong, but truth is that you think differently.

After the diagnosis, you start to understand yourself. It is also a long way to understand them. At first I felt cheated, I felt that they all ruined my life, yes. After, I have started to try to understand them. Why they wouldn't simply tell you: "you - have - autism" (if they know it).

In the NT world,
- you don't say to someone: "you have autism", like you don't say many other things. It is not the way they talk, not so directly. Maybe some told you indirectly, but we do not easily understand indirect talk;
- also for their part, self-esteem and how they appear is fundamental and very sensitive... and they think logically that it is the same for you. Hence, they don't say "you have autism", in order not to hurt your presumed sensitive self-esteem.
- they also like people who are like them, do the same things as they do, think the same way they do. So they wouldn't tell you "you are different" or "disabled" because it would be like confessing directly that they dislike you or even despise you.

When you are diagnosed, it is like you are born a second time: it is nice, but you have to learn everything again

Exellent post. I really relate to that 2nd birthday feeling.

Choosing Marlon Brando, On the Waterfront made me smile. Very good choice...it really does feel like that sometimes..."a one way ticket to Palookaville."

I'm glad I never knew. I simply thought everyone else was weird. Now that I know, after analyzing the repercussions and social consequences of not knowing, I'd prefer not to know. Plato, I guess.

My initial reaction upon finding out about Aspergers went somewhat like this:
"I'm the weird one? They're studying/labeling people like me? How dare they?"

Interesting, I came to the opposite conclusion, I recon that I would have been much more successful if I had known. Obviously in my case they had been rather busy sticking all kinds of other labels on me that didn't fit.

I have always felt the others were weird, I still do! Hasn't changed, I'm normal, they.... not so much....

I had to survive 12 years of public school as an undiagnosed autistic person. Teachers reacted to my learnng disabilities by failling me. I didnt graduate high school.

I struggles with life and whenever I started building something good, it would come crashing down.

Being diagnosed has helped understand why I struggle and how I can deal with it.

But I am still pissed off about the stuation.

yes maam.

when i was 21, i went to a neuropsychiatrist and he diagnosed me with aspergers. but i only went to him, b/c i wanted to get a learning disability diagnosis, so i could get testing accommodations at school. and i was flunking out of school. ucsd. structural engineering. at the time.

after he told me the diagnosis, he told me that, over the phone, his working hypothesis was Nonverbal Learning Disorder, but he did not make it, b/c i got too far in Math, to get that diagnosis.

according to Child Protective Services, that is called "failure to attend to a special education need."

my precious little "parents" made me start studying for the SAT in 3rd grade and take it in 7th grade. my 7th grade score was higher than the average 12th grader's score.

my 7th grade score was higher than my older sister's 7th grade score. and she is a medial doctor.

so my precious lil "parents" thought, believed, wanted, and felt morally entitled to me becoming a child prodigy. they expected me to be just like a normal cisgender neurotypical girl, except be an academic genius. they would not have wanted me to be social, physically strong, visually attractive, or anything like that. but they would've wanted me to be standard and functional, in other ways.

numerous times, my precious lil "parents" had the nerve to tell me i used the wrong facial expression. at least once they had the nerve to tell me i had no friends.

in other words, my precious little "parents" recognized the symptoms of autism.

but the blamed me for them. like "here's what you did wrong. bad girl".



and they did not consider that maybe i fulfilled the standards of a diagnosis.

and then it turned out they were wrong. not just wrong, but they legally should've sent me to get a diagnosis.

and what do i get, a lame lil "i'm sorry, sir"? of course not.

then my precious lil "mom" had the nerve to tell me that i was "selfish" and did not care about anyone except myself.

and that was after the diagnosis.

things were much worse before the diagnosis.

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functionally, it matters, too.

for example, the Regional Center only provides services to clients diagnosed before 18. and all (or almost all) the government services available to autistics, go through the Regional Center. in other words, i get almost no resources, b/c diagnosis too late.

likewise, in a neighboring school district, it has a special education job training program. it's through public school. in other words, paid for by taxes. it goes from age 18-24.

seriously.



6 years to learn job skills, after high school.

plenty of jobs you can learn in 6 years.

a case worker.

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emotionally and socially too.

if an occupational therapist were to have attend to my worthless corpse, then maybe i could've been functional. or at least less dysfunctional.

and, oh, lest i forget. overlook. do not minimize, ignore, or forget the shame.

embarrassment. humiliation. shame. guilty. inferiority. inadequacy.

that i felt immensely, numerous times, throughout my victimized "life".

of how i was different from precious lil "most people".

of how precious lil "most people" went to the junior ball, the senior prom. precious little "most people" dated the opposite or same sex teens, during high school. and i did not.

and all those times i said or did something, and classmates, strangers, acquaintences, precious lil "friends", enemies, frenemies, instructors, faculty, precious lil "parents", precious lil "family" members, and et cetera. and they gave me unfavorable responses. blown grossly out of proportion. just b/c they did not like it.

when in reality, i was autistic. i am autistic.

or, at least, according to the diagnosis.

the diagnosis might be wrong.

during the Rote Memory portion, the neuropsychiatrist told me to recite back 10 numbers. the first 3 digits of the numbers were all san diego area codes. in other words, he made it easier for me to score high on the rote memory section, by picking numbers that were easier to remember, in that the numbers were not random. scoring high on the rote memory section, was a symptom of autism. scoring high on the rote memory section made it easier to get an autism diagnosis.

but whatever.

nobody has proof of what the correct diagnosis is.

but autism sounds like it has a lot of applicability, even if it is not correct. or even if it is not the only correct one.

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but mostly what it makes me feel is angry. b/c my precious lil "parents", and all the other bozos that grossly and repeatedly misunderstood my actions and statements. could not have cared less about my rights or emotions. they acted like i had no rights or emotions.

they only cared about their rights and emotions.

and, i suspect that, if i were to have gotten the diagnosis when i was younger than 18, that it would've given schoolteachers better perspective, on how to misinterpret my socially awkward actions and statements. and to better respond to them.

like one time, a precious lil "teacher" told the dean i dialed her phone # and hung up. (rolls eyes). and the dean told me that what i did was illegal. and that if i did it again, then the school had a legal right to expell my unacceptable corpse.

but of course, if the school records had contained the autism diagnosis, maybe those big egoed bozos would've responded less theatrically.







but whatever.

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but whatever. right or wrong. correct or incorrect.

what difference does it make?

"life goes on."

I always thought I was normal, but for some reason notheing ever seemed to work for me. I struggled with the things others took for granted.

I could tell you the names of several thousand plants, but couldnt pay my cell phone bill on time even though I have the money.

I had a coworker just ask me if I was autistic. I thought it was a pretty bold thing, something I might do, turns out he is on the spectrum.

Me too. I am still trying to grasp that I am challenged in ways others aren't and to not be angry with myself for failures.