Being Diagnosed Later in Life

[Spotty01]

Is autism/Asperger's more likely to worsen with time or be harder to control if someone in the Spectrum is diagnosed later in life?

I'm not positive about how common this is, but back when I was in grade school and just from what I've heard both IRL and on other sites, it seems that most people on the Spectrum are diagnosed at a younger age; I guess that could explain why so many support groups mostly focus on younger age groups and their parents. I mean, I could be very, VERY wrong about this, but either way, is my aforementioned question the case? Do ASDs get worse or become more difficult to control when one is diagnosed older? Maybe not in every case or even in a lot of cases, but does it happen, or is that more likely to be the case?

I, for one, was diagnosed at age seven and, even now, at age nineteen, I have tendencies to be oversensitive (crying easily and having an incredibly short fuse), I sometimes get upset/anxious/angry over very trivial things, and I occasionally act what I would call "childish" or "immature" (i.e. making strange noises at random, the aforementioned getting upset over trivial matters, sometimes sitting in one place and rocking or doing weird things with my hands, stuff like that). Half the time, I don't even realize I'm doing it until something else snaps me out of my trance and I just so happen to notice that I'm doing it. When I think back on it, this could simply be a normal ASD thing and, I won't lie, I'm guilty of trying to look at life like a neurotypical would instead of how someone on the Spectrum would. My whole life, my peers have avoided me and made fun of me because I was "weird" and "different" and adults would frequently call me out for things that I couldn't even control, to the point that I try to act more like an NT or act "normal", in their eyes, in order to avoid this.

This time around, while I didn't see any threads like this once (I also wasn't positive about how anyone else might word it) through the search bar, that doesn't mean there isn't one someone deep in the catacombs of this site. Again, I apologize for the prior incident, that was my bad and I'll try my best to ensure that it doesn't happen again. That is all.

 

[Danny 74]

I was diagnosed at 41....! The last two years of my life have been so much better than the 41 years i had to suffer, i understand myself now so its easier to just soldier on and deal with it.. My doctors have been great..! Love going to my appointments, and i love learning on aspie central....!

 

[icesyckel]

I was diagnosed at 41....! The last two years of my life have been so much better than the 41 years i had to suffer, i understand myself now so its easier to just soldier on and deal with it.. My doctors have been great..! Love going to my appointments, and i love learning on aspie central....!

I too was diagnosed as an adult, though not as late in life as you, and I too have found it immensely useful to understand myself better and to discuss my issues with my psych. It's helped me understand more than anything how I keep getting "off the rails" in my discussions with the norms.

 

[WereBear]

I was diagnosed almost a year ago, and this has greatly improved my life. By understanding what it going on, I can cope with it so much better.

I am outraged that as far as society goes, people like me and @icesyckel and @Danny 74 might as well not exist at all...

 

[Spotty01]

Hey, I didn't mean to offend anyone, I really didn't. I wasn't saying that everyone diagnosed later in life is worse off, I was just wondering whether it was the case or not and, thus far, it apparently isn't.

I don't know if my life really has started going downhill ever since I learned that I was on the Spectrum, or if I should just start having a more optimistic outlook on it like you guys. Unfortunately, it's been a bit hard for me to when it seems like no-one IRL understands how I see the world, how I feel (or the fact that I have feelings at all), and how I'm often ostracized by NTs because I'm "different".

 

[Danny 74]

Hey, I didn't mean to offend anyone, I really didn't. I wasn't saying that everyone diagnosed later in life is worse off, I was just wondering whether it was the case or not and, thus far, it apparently isn't.

I don't know if my life really has started going downhill ever since I learned that I was on the Spectrum, or if I should just start having a more optimistic outlook on it like you guys. Unfortunately, it's been a bit hard for me to when it seems like no-one IRL understands how I see the world, how I feel (or the fact that I have feelings at all), and how I'm often ostracized by NTs because I'm "different".

You havent offended anyone....! Keep your head up and soldier on bruv....!

 

[icesyckel]

I was diagnosed almost a year ago, and this has greatly improved my life. By understanding what it going on, I can cope with it so much better.

I am very pleased to read this. I've often said the best part of getting Dx'd has nothing to do with benefits/accommodations (though that can be a benefit for sure) - it's about the understanding it brings and the vindication of knowing you aren't crazy and that you really are that different.

I am outraged that as far as society goes, people like me and @icesyckel and @Danny 74 might as well not exist at all...

Please don't take or read into this the wrong way, but I literally don't understand what you meant here?

 

[icesyckel]

Hey, I didn't mean to offend anyone, I really didn't.

You didn't offend me, for the record. Not even remotely. However, I don't offend easily, so I can't speak for anyone else.

Unfortunately, it's been a bit hard for me to when it seems like no-one IRL understands how I see the world, how I feel (or the fact that I have feelings at all), and how I'm often ostracized by NTs because I'm "different".

Forgive me if this sounds pithy, but these things get better when you get closer to my age/Danny's.

It's not a total solution, but this largely gets better because you have so much more control over whom you interact with outside of work, if anyone. Until I finally got married, I lived alone for more than a decade. It makes dealing with NT's easier. Also, NT's tend to mature with age and don't go quite as far out of their way to ostracize unless something else sparks the disagreement. I think it's important for aspies to try their best to control as much of their schedule as possible away from school/work so you can always choose how much NT interaction you want on a given day.

NT's need friends/socialization. For those on the spectrum, this can be nice, but I don't think most of us need it to the same degree. I know I don't. When I tire of the norms, I just try to get away from them.

 

[Inator]

I'm 20 years old aspie, 13 years old in my mind, self-diagnosed.
I was tired of the bullying at high-school, so when I begun college two years ago, I stopped "being myself", and spent more than 7 months analyzing and acting like NT. Sure I already done a similar process in the previous years, but only at college I begun at great scale, and I'd even secretely record the audio/video with the phone, just so I could check out later and improve whatever details I found necessary. Or sometimes I'd record myself in front of the camera, to somehow "calibrate" my and improve my acting.
However, that made me super tired, so much that any little thing made me angry or sad (mostly sad, but whenever I avoided to cry (to not look like a "fag"), I "patched" that with anger), thus making my acting look even worse on myself than if I didn't, actually.

I have a hope in my life, outside of NTs' matters. None one of my "true" friends, in real life and internet, are pre-judging-NTs. Actually, I realize that most of them are also aspies, some others bipolar, etc. However, and because we've all spent through similar cases, we get along quite well, which allows us all to have a minimum of self-confidence and mood, and therefore act better than if we spent just alone.
During my first time at college, I acted NT, stuff went quite well, until I got tired, and all my college's friends just stopped talking to me. At the same time, together my other "true" friends we were working on a videogame. When we were about to hit deadline, coincidentally I had a rain of exams at College at the same. I should have studied. But I didn't!, I didn't care!, and I screwed college. Why? because I prefered to keep working in the game, together our team. Spent lots of sleepless nights fixing issues, trying to draw animation in proper quality, etc. The team counted with my work, gave me all their trust, and for the first time in my life, I felt happy feeling to be part of something, or a good cause. We didn't complete more than 60% of our game plan, but the game's release gave me a satisfaction like never before!!. I think was one of the, if not THE best moment of my life. Do I regret screwing college? no, I don't. I might be a "rebel", but my own happiness matter more.
What happens now? I'm still socially anxious, a lot. However I'm still minimally self-confident in real life, that not anyone could just go and piss me off however they want. I don't have to follow what others say me to be happy.

@Spotty01 I think anyone can feel happy "their own way". I dropped "the logic" for some time, and instead I thought with "the heart". And although I lost an important career, I think it was a necessary bad, life continues. And some day I'll have the mood and time to try again.
If it is possible to do good without following "NT's way", the rest doesn't matter. Never give up.

(my therapist doesn't even believe I have Asperger anymore lol)

 

[tree]

Some threads on a similar topic

Late diagnosis, looking for resources

Autistic women diagnosed late in life: Appearing 'normal' on an 'uneven playing field'

'All my life suddenly made sense': how it feels to be diagnosed with autism late in life...

Those of you who were diagnosed for Autism later in life

 

[xudo]

I was diagnosed at 30, and as others have said it was a great thing, as I now understand myself better. Added to that is that I can now access help, albeit limited as it's still mainly geared towards kids.

 

[WereBear]

I am outraged that as far as society goes, people like me and @icesyckel and @Danny 74 might as well not exist at all...

Please don't take or read into this the wrong way, but I literally don't understand what you meant here?

I might as well not exist as a middle-aged, newly diagnosed, person with Asperger's. My insurance company didn't pay for the diagnosis, even though I have it. Likewise, they don't want to pay for my weighted blanket or anything for a sensory diet, because it's not "medically necessary." I can't find any therapists in a three hour radius of me, and insurance probably won't pay for that, either.

 

[icesyckel]

(my therapist doesn't even believe I have Asperger anymore lol)

I don't think your therapist understands AS.

 

[icesyckel]

I might as well not exist as a middle-aged, newly diagnosed, person with Asperger's. My insurance company didn't pay for the diagnosis, even though I have it. Likewise, they don't want to pay for my weighted blanket or anything for a sensory diet, because it's not "medically necessary." I can't find any therapists in a three hour radius of me, and insurance probably won't pay for that, either.

Thanks for clarifying. That makes sense. Yeah, in a lot of ways, getting Dx'd really was just for me b/c it didn't get me anything besides insight, understanding, and peace of mind.

 

[Spotty01]

Forgive me if this sounds pithy, but these things get better when you get closer to my age/Danny's.

I've been wondering for a while if my age has something to do with this and that it would start getting better once I got older and matured mentally/emotionally a little more.

It's not a total solution, but this largely gets better because you have so much more control over whom you interact with outside of work, if anyone. Until I finally got married, I lived alone for more than a decade. It makes dealing with NT's easier. Also, NT's tend to mature with age and don't go quite as far out of their way to ostracize unless something else sparks the disagreement. I think it's important for aspies to try their best to control as much of their schedule as possible away from school/work so you can always choose how much NT interaction you want on a given day.

NT's need friends/socialization. For those on the spectrum, this can be nice, but I don't think most of us need it to the same degree. I know I don't. When I tire of the norms, I just try to get away from them.

I don't think it's just NTs that need friends and social interaction, at least not from my perspective. I often long to have companionship with other people IRL because I see or hear about the fun and all that a lot of people do together and it just makes me feel lonely because I've never experienced it myself, but I want to.

I've also found myself wanting to "hang out" with other people (NTs or otherwise) and have more social interaction, then I get a chance to do that... and I find myself wishing I had time to be alone again and the socialization quickly wears out its welcome.

 

[icesyckel]

I've been wondering for a while if my age has something to do with this and that it would start getting better off which I got older.

And I don't think it's just NTs that need friends and social interaction, at least not frm my perspective anyway. I often long to have companionship with other people IRL because I see or hear about the fun and all that a lot of people do together and it just makes me feel lonely because I've never experienced it myself, but I want to.

I've also found myself wanting to "hang out" with other people (NTs or otherwise) and have more social interaction, then I get a chance to do that... and I find myself wishing I had time to be alone again and the socialization quickly wears out its welcome.

I'm now (after many years of experimentation) capable of doing it (the whole socialization thing) such that NT's actually don't notice I am different and enjoy interacting with me, but it's just play-acting on my end, and it requires a lot of effort. I don't really enjoy it most of the time and would rather be alone. Maybe NT's aren't the only ones who, "need friends and social interaction," as you say, but I'm fine without it. I enjoy interacting with folks here being myself, don't get me wrong, but I'm fine alone too. You're better off if you can be happy with just you, though I understand that is hard for even some on the spectrum.

Regardless, if you make an effort, things will get better as you age Spotty. Trust me. The majority of NT's will mature past childish pranks and petty judgments, etc. It may never get to the point where you're their first pick for football, but it will make it easier for you to learn how to interact positively with them.

 

[Spotty01]

I'm now (after many years of experimentation) capable of doing it (the whole socialization thing) such that NT's actually don't notice I am different and enjoy interacting with me, but it's just play-acting on my end, and it requires a lot of effort. I don't really enjoy it most of the time and would rather be alone. Maybe NT's aren't the only ones who, "need friends and social interaction," as you say, but I'm fine without it. I enjoy interacting with folks here being myself, don't get me wrong, but I'm fine alone too. You're better off if you can be happy with just you, though I understand that is hard for even some on the spectrum.

Well, when you put it that way, I guess I would be better off alone, especially if you have to act fake just to make people like you. If they only like spending time with you when you're wearing a mask, and not the real you, then they aren't even worth wasting your time with.

But, while I do enjoy coming on this forum and interacting with people here, people who understand how I feel and I see the world, I still feel like I need face-to-face interaction every once in a while, though I'd much rather it be with other people on the Spectrum than with NTs for the aforementioned reason.

Unfortunately, like I said in another thread, it seems like places for people like us to meet others on the Spectrum are very few and far between, for adults at least.

 

[Desiree W]

The main issue I have with being diagnosed later in life is lack of resources for adults. I mostly see services aimed at kids/teens. Hopefully, this will change.

 

[Spotty01]

The main issue I have with being diagnosed later in life is lack of resources for adults. I mostly see services aimed at kids/teens. Hopefully, this will change.

Oh, yes, I couldn't agree with you more. It seems to me that society doesn't know (or doesn't want to admit) that adults have ASD as well as children and younger teenagers, or that these children/teens grow up and continue to have some struggles.

On a couple of occasions, I've thought about starting up an ASD support group in my immediate area since the only two I know of have outrageous membership fees. The only real reasons I never have is 1) because I don't have the courage yet to run something like that and 2) I wouldn't even know where to start.

 

[icesyckel]

Well, when you put it that way, I guess I would be better off alone, especially if you have to act fake just to make people like you. If they only like spending time with you when you're wearing a mask, and not the real you, then they aren't even worth wasting your time with.

People have their uses, even if you don't like them. If I have to put a mask on to get along, then I won't hang out for purely social reasons, but I can do it for career advancement, etc. Seriously, apart from the serial-killing, watching Dexter on Showtime is pretty much what I do day in and day out. Fake smile, pretend to care, make small gestures of fake affection, etc., etc., so long as it all does something productive for me.

But you're right - no point in doing more of this than I need to in order to achieve my professional and other goals. I certainly don't want to spend more time with them then I have to...

But, while I do enjoy coming on this forum and interacting with people here, people who understand how I feel and I see the world, I still feel like I need face-to-face interaction every once in a while, though I'd much rather it be with other people on the Spectrum than with NTs for the aforementioned reason.

Unfortunately, like I said in another thread, it seems like places for people like us to meet others on the Spectrum are very few and far between, for adults at least.

I am guessing you might be a lady-type person? I know ASD presents different in women, and women tend to be more social in my experience than men, if you will permit me the observation (some might say it is a sexist observation, but political correctness is really more of an NT thing - all I care about really is accuracy). I wish I could relate, but I just don't get lonely much if ever. The closest I come to lonely is bored, in which case I sometimes go to the food-court at the mall and people watch. I don't talk to them, just watch. That's probably creepy, but I don't stare anyone place too long to avoid giving people the wrong idea (boy have I learned this lesson the hard way). It's like watching a documentary unfold. That's about as social as I need.

I wish I knew how to help. Like you said, in a lot of places, there are no ASD "clubs." I had a friend once who might've been on the spectrum, and I did enjoy hanging with him. We shared similar obsessive interests. Then he got married, and his wife hated me. No more friend. I do miss him, and so I can sort of relate to what you're going through a bit.

All I can say to encourage you is that, as they age, NT's tend to like people for more legitimate reasons than in HS or even college. Reasons like whether you are nice or interesting rather than what sports team you were on. If you really want to, then you'll have NT friends in the future. It's not beyond your abilities.