The double-edged sword of a late diagnosis

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So after hearing numerous times from each psychologist/behavioral health specialist I saw briefly after my initial diagnosis; that my symptoms (although present) are "so mild" and how "normal" I am--it really got me thinking about my childhood and early adolescents, and how severe my "aspie-ness" was in comparison to now.

I believe that growing up without the label (and not being segregated into special classes/treatment etc..), was beneficial in forcing me to adapt more and acquire greater social understanding/experience than I would have, had I been flagged early on in life (which was almost unheard of, having grown up in the 80's and 90's).

That being said, it was obviously painfully emotionally jarring and confusing not understanding why I felt so "off" from everyone else, and had obvious complications/misunderstandings in dealing with teachers, peers, and even my own family throughout the years. So it really does feel like a double-edged sword being diagnosed so late. On one side, I've had all kinds of friends, girlfriends, experiences and growth that I certainly wouldn't have had, or have to the degree I do, had I been diagnosed young.

BUT, on the flip side of that--had I been diagnosed early on, I most likely would have foregone the majority of the negative experiences that are still burned into my psyche to this day.

I'm curious to hear from those of you with a late diagnosis, and if you think you'd have been better or worse off--had you been flagged early on.

P.S. I was diagnosed after seeking treatment for anxiety in public and "this thing" that I'd done since I was a kid that I was super embarrassed/confused by--which turned out to be motor stereotypies and sensory processing disorder.

Anyway, thanks for reading if ya did.

-Tony

I'm 41 and was diagnosed last week. The answer to this for me is clear: had I been diagnosed early my life would not have been such a struggle and I would have been able to reach my full potential.

However, had I been diagnosed early, my life would have taken a different path and I wouldn't have met my wife and I wouldn't have my two kids. So in terms of regrets, I have none. And I cannot say "I wish I'd been diagnosed early", simple for that reason.

But let's say one of my kids starts showing signs of ASD (and they both do to some extent), I would absolutely 100% be looking for an appropriate diagnosis as early as possible.

I don't think it's fair to say that if you had been diagnosed young you would not have had friends and girlfriends and all that you said. You don't know what your life would have been like. Even in the 80s and 90s they knew enough not to put Autistic kids in institutions and the help you would have gotten might have done good things for you. It could have gone badly but you really can't know.

I was diagnosed a year and half ago at the age of 47. Had I been diagnosed as a young child, I could have possibly been institutionalized since they were still doing that then. But knowing the kind of people my parents are, I don't know if they would have let me be put in one of those places. It was a very different time in the 60s and 70s and being diagnosed as a small child then would have resulted in a very different life than it does now. So in that sense I am glad that we did not know then.

I also developed a tremendous survival instinct and a resilience that I don't know that I would have had if I had been diagnosed earlier. I also developed my own coping and survival mechanisms that seem to be working for me since I am still alive a half century later. My coping mechanisms may not be the best or the ones that are taught but they have been working for me and so much so that I was able to slip through the cracks and go unfound for 45 years.

I can't say that I would have not met my husband if I had been diagnosed sooner because I just don't know if that would have been true. If we were meant to be than I believe that it would have happened either way. And I believe that that is the same thing for the friends I have and have had along the way.

But I do know that school would have been easier if I had had an IEP and that I would have graduated from University with honors rather than dropping out three times, the last time being 4 classes short of a BA. And I probably would have had a much better employment history. And my relationships, especially with my family, would have probably been much better. It is possible that I might not have been as bullied as well but of course, all of those things are also speculation. Even kids now who are diagnosed as babies and get all the help available still have some of these issues. So truth is that I just really don't know how it would have turned out. But I am glad in a sense that it happened the way it did because it made me have the strength of character that I have. And it made me a very sensitive, compassionate, and loving person and that is a good thing. And maybe I would have been that way either way, who knows. But the sequence of life that I have is what I was given so it's me and I am glad to be me. See my signature below!

I was diagnosed at 39 years old in 2008.

But we really do never know how things could have turned out if our lives had been different. There are many people who were institutionalized who still had spouses and families and successful full and rich lives after the institutions were closed. We each get what we get in life and we do everything we can to make the best of it.

I was diagnosed early, but my experience was heavy handed "therapies" to normalize were present was one that many children with ANYTHING different would have fared less well. My father and maternal grandfather were geniuses, entrepreneurs and problem solvers, and highly family supportive. My father was a Millionaire and Who's Who Interest.
Intelligence of these men had my difference noticed early, knowing people he could ask the right questions. Originally he though my mother had possible caused it, like maybe dropping me. Or exposing me to the illnesses I had at that age. And her oddity in socialization was also blamed as trigger for diagnosis.
Money flew us to Europe and my first diagnosis. Money flew us up north somewhere and confirming diagnosis. Money was thrown at me to have people who could teach me to compensate. I was calm around animals so animals were around. I had a cat, a dog and pony and several life points. Both men believed music helps with math so I had piano lessons for thinking and coordination (I HATED hated HATED). I had speech coaches and tutors. Calming fabrics so velveteens, silks and furs. I was forced to accept people in personal space, control stimming, redirect meltdown and OCD, forced to accept hugging and touch.
I was never told then I had Asperger's until I was older at 14. My dad told professionals and myself in 1980 where I had third confirmation during evaluation because an event triggered nervous breakdown and mom told him over an incorrect diagnosis so he flew out and coughed up the medical records (they were divorced at that time and on two different seaboards). I was highly verbal young and this assisted the effort. I started school at age 4, skipped to first grade in same year. I was always tutored and hovered over until I passed as mainstream enough.


My younger son though would not be anywhere close if it had not been for early intervention with IEP in preschool until I was able to get him t a specialist in Phoenix. He is non verbal still but therapies definitely turned him from an angry animal that I was fearful I could not care for if he much larger and still acting that way, to a more pliable little person. Early diagnosis means that broke me can still see him get at least a thrid of the therapies I had

I have had that happen as well. The best one was when it happened all in one conversation. One minute I was talking to someone like a regular normal person of the same age having a regular, normal, mature conversation. Once I mentioned that I was Autistic, in the other person's eyes, I immediately turned into a toddler and she started talking to me as if I was one. It was really weird. It was actually pretty funny because she was so incredibly stupid.