Adult Diagnosis Increased/Increasing Symptoms Question...

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Something Profound
Snowy Owl
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02 Aug 2021, 1:24 am

I read and heard in a few places that for people who discover they may be on the spectrum when they are adults, it is common for an increase in symptoms to occur AFTER they learn they have ASD and/or get a diagnosis. That is, an increase in stimming, an increase in social tolerances, sensory overload issues, and so on. It seems the idea is that once you have the "Aha!" moment where everything seems to click, you sort of have more of the affect, either because you feel less fear of doing whatever behavior it is, are just noticing them more, or possibly because you are doing these the behavior affects because it is something you acknowledge as "normal" for being on the spectrum. Not to suggest that it is "faking" the symptoms, but I am struggling with explaining it any other way.

I want to hear input from people who have gone through the process on whet their experiences are on this is. When you received your diagnosis as an adult, did you notice the severity of your symptoms or ASD affect to increase? If you have not yet received a diagnosis but think you are on the spectrum, have you noticed a change?

I ask because I am going through some of this myself. It generates a lot of confusion on my part, as I know that many behaviors are ones I have experienced and exhibited most of my life, but they seem to be more frequent lately.

Any input would be helpful, and I am sure there might be others who have such curiosity.



starkid
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02 Aug 2021, 2:30 am

People are strongly motivated to start seriously considering what may be wrong with them when their functioning begins to decline.

So diagnosis likely roughly coincides with an increase in autistic behavior because a breakdown in functioning prompted the autism evaluation and caused the behavior.



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Snowy Owl
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02 Aug 2021, 2:50 am

Fair Point, and one I can't deny has some merit. I have been dealing with a lot of things that, all things considered, would explain why I am so frequently having more of the "affect" than normal. The difference is that whereas when I was younger I had no indication that I was anything except maybe depressed or overstressed, I now have an inkling as to what might be the issue, and I am seeing the ASD affect in stuff I have been doing all along (and with more frequency because of the stuff I am dealing with).

Good input. Still curious to hear what others may have to say.



Dear_one
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02 Aug 2021, 6:23 am

Soon after I learned about AS at 56, I expected it would help others to understand me. I didn't lean very hard on that assumption, though. I think it was unrelated that soon after I had a very traumatic experience that cranked up my PTSD. Knowing about AS just made it easier to understand that I'd never be understood. My circumstances are so different now that I can't sort out the contribution of AS awareness.



chaosmos
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02 Aug 2021, 6:25 am

Definitely.
I have suspected for around 3 years that I have ASD. Began researching around that time and have spoken at length about it with my therapist.
Recently I’ve begun having those conversations with people close to me - partner, my sister and my Mum, all of whom agree with my inkling. I definitely noticed a change in me after making it more real by talking to those I’m close with (that is beyond the therapy room where I have always been free to be how I am).

My behaviour has elevated since owning my quirks. Stim more openly, less masking and more authentically me, which is of course more aspie. It feels good and I think my uniqueness and talents feel more celebrated than diminished. Starkly different to how I was treated as a child, particularly by my Mum. We’ve come a long way.

I’ve got a long way to go though and each day I get closer to pursuing diagnosis. I think I will… I’m the sort of person who needs affirmation of my deep beliefs of myself.



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02 Aug 2021, 7:34 am

I have not been assessed yet. I have noticed a change though. More of a relief in that I don't feel I have to put in so much effort to act "Normal". It takes effort to be normal around others and in public places (I don't think it works as my best efforts were lacking somehow through the many criticisims I had... Things like "Why can't you be like we are?" when I would be doing all I can to be like they are and still failing! No one I know has tried to be more normal then me and it does not work! I came to that conclusion in my mid 30's way before I knew anything about autism and it was a release within me then, but I still masked. Just that if my masking did not work I was less hard on myself).

Society is hard on anyone who does not fit in, so I had made a big mental effort to try to learn how people worked. How governments worked. How money worked. I wanted to understand everything so I could be more "Normal" but the more I foundout and learned did not help because I had pushed way beyond what normal people say and do just by learning this! So I was less normal through trying then if I had not done so!
But that was my past.

I discovered what autism aas after a lifelong search to try to track down a mysterious health condition that had baffled me and doctors for years. The doctors ended up labelling me as some sort of hypercondriact and they restricted my visits from two or three a year to one three minute (Timed while the doctor looked at his watch the entire time and hardly looked at me) appointment a year or every other year. I ended up leaving that doctors after my heart jumped up and down quite violently on this one occasion and I was stuck on the floor for an hour or two, and for a few months my body felt cut in half. I explained to the receptionist at the doctors what had happened and if I should go to the hospital and she said on no account should I go to the hospital and I would have to ring in the morning to get an appointment. Every morning the phones were jammed and every single day I tried to get through, when I did get through it was "Sorry. All appointments had been taken" and my trying to explain would end up with the phone put down on me. After a couple of months I stopped trying daily and tried two or three times a week, and after eight and a half months I got a doctors appointment. (My aunty died for the same reason at the age of 56 and she had never drank or smoked and always kept herself fit and ate healthily and yet she had been having a series of heart attacks and she once phoned 999 and the ambulance men could not find anything and gave her such a telling off she dare not ring them again. She tried to get a doctors appointment for six months. She eventually gave up trying and a few months later she died. Ortopsy said she had had a series of heart attacks over a prolonged period of time).
When I did get an appointment, I was severly told off by my doctor for not seeing him earlier and he said "I can't do anything now!"
With that I and my Mum decided to change doctors surgeries. The last doctors conveniently had lost all our medical records so the new doctors had to go entirely by scratch which was the best thing that has ever happened to me as this time I could start logically trying to find out what was going on. The new doctors was like a different world. I could get appointments in the same week and sometimes even the same day! It was unbelievable! The longest I have waited there is ten days and that was when they had a bank holiday inbetween. I had asked for 18 years at nearly evrry appointment to have an allergy test at the old doctors as one had once said that I had "Some sort of allergy" and while I knew back then I did not get on with dairy products, it was not the full picture. I never had one as the old doctors never had the funds to do it (Their words. Very strange as they had grants of £7k a year per each of our family members to do house visits with us because we were an outlying area and I only ever had one house visit when I was around 16 to 18 years old so where did all that money go as they were getting 5 times that amount per year (As we were a family of five) from our government for doing nothing! My grandmother had an emergency. She was 82 years old and my Mum phoned and the receptionist said "Sorry. We only do house visits for the elderly" ad she hang up on her. My Mum phoned back and said "She is elderly" and the receptionist repeated the same and hung up. My Mum phoned again and said "She is 82" and the receptionist said loudly "We only do call outs for the elderly" and slammed down the phone! (We had to dial 999 instead on that occasion and it was a good job we did).

But with this change of doctors surgeries, I asked for an allergy test and they said "We can't give you a comprehensive test but we can do the simple six point test" (Which is what I had been asking for for so many years with the old doctors!). I was delighted as I wanted to test if this condition was an allergy.

Now me and hospitals don't get on. I find doctors surgeries hard enough but hospitals.... And having a blood test as well... (I did not know back then as I assumed it could be fainting but it was never the same... I would get shutdowns in hospitals caused by the smells of bleach and hospital smells so for me it was not a good experience. It was these verh shutdowns which were the lifelong health condition that I had been trying to find out what they were!)

Uhmm. This is getting long. I need to shorten what I say.

Well. After a series of events where I had prayed in desperation "Lord, what's wrong with me?" and little by little strange things happened. I had several people tell me I was autistic or asked if I was. I happened to meet my second girlfriend and she had aspergers syndrome which really puzzled me as to what it is, because everything she said apart from two things was normal to me. I did not know that I shared autism traits. I thought it was normal. I just could not work it out what aspergers syndrome actually was. The only two things which were different was that she said she rocks back and fore when anxious. I tend to stim in other ways which are often more hidden so I would not get told off for doing them, and she said she thinks in an entirely different language and has to translate it into english... She is on her own there! Though I think in pictures if I go into deep thought as I am a very visual thinker. I actually come down from a family of designers on my Mums side who were very much visual thinkers.
But these did not explain the shutdowns. I had never heard of shutdowns. Now the ex. GF had me take a simpke online autism test and it came up as "See a psycologist or a health professional". At the time I had not long changed doctors and I thought "Great. Trying to go to a doctor because an online test told me to when I don't even know why the test said that because I may or may not be autistic? (The results came out as boarderline because I did not know what the word stimming was so I put "No" to the question and another few questions I put "No" to because I did not know what they meant when I should have put "Yes").
I tried for two years to ask my new doctors but each time I tried to I hit mind blank. I had to see them every few months as by then I had had high blood pressure so they wanted to monitor me.
I got so annoyed with myself for hitting mind blank that I wanted nothing to do with asking if I had autism!

But then I happened to be on a research binge via Youtube about prosopragnosia as I have this on occasions and so does my Mum. This lady kept coming up with her videos called "Ask An Autistic". I did not want to know! But three and a half days later I had watched every single film put up about prosopragnosia and hers was the last one. Well. It was like a switch had been turned on when she said something like 80 percent of those who had prosopragnosia were on the autism spectrum.
I had to find out. I had also watched all her videos in another youtube binge and while most was going over my head there was something about a similarity between meltdowns and what I experienced (Shutdowns. Found out since they can have the same triggers).
So I booked a doctors appointment. I was determined to find out if I was autistic. I reasoned that if I was it would be the aspergers end.
In order to combat the mindblank, I brought my mother in with me and told her what to say if I could not talk.
My Mum did not believe I was autistic back then but like me she did not know a lot about it and our pre-concieved ideas were way out compared to what I later found out what autism is (And have explained to my Mum so she has a better understanding).
Good job I took my Mum in as she did have to speak when I hit mindblank.
I actually expected my doctor to be able to give me a yes or a no answer! Uhmmm. It does not work like that. I have been accepted to be on a list to be assessed. That was late april of 2019. I joined this site out of frustration as I had a question to ask to find out what the shutdowns were, and I did find out and have been here ever since!


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Mountain Goat
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02 Aug 2021, 7:36 am

Ignore what I wrote as I go off on tangents. I have not been assessed yet but the answer to your question is "Yes".


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Technic1
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02 Aug 2021, 7:41 am

No one really knew I had Aspergers until I got diagnosed and started acting like it.



Something Profound
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02 Aug 2021, 2:24 pm

Mountain Goat wrote:
Ignore what I wrote as I go off on tangents. I have not been assessed yet but the answer to your question is "Yes".


I am known to do the same thing, though not to the same extent. We are all different though and do things differently, so don't worry. I expected there to be some long winded posts.

I think one of the things I am doing more frequently is giving myself permission to do my quirks openly. I am sure that it will take a long time before I am fully comfortable doing things in public that I do privately (Rocking back and forth isn't something I would be willing to do in public consciously, though I have caught myself unconsciously doing it on occasion). But instead of allowing my natural inclination to repress those traits and quirks, I am allowing myself to do it because it is ok to stim, it is ok to acknowledge that I have a hard time emotionally tethering to other people's joy and sadness (Though I have to accept that they have those feelings and need to experience them), and it is ok that I think strangely. One of the things I wish that would happen less is the frustrations I get over expressing myself. Before I realized I was likely on the spectrum, I would be mad that I'm not being understood, but it wouldn't be anything more than, "OK, this is a miscommunication, I need to try again when I'm not as mad." Now it is, "I know what I want to say, I know that it makes sense to me, why is it that no one else sees that this one word I am using in a sentence is crucial for understanding what I mean? Yes, communication is hard, but *I* am the one who is supposed to have deficiency here, not everyone else!" And yeah, that isn't really true, but it comes out when I am frustrated, and that makes it even more frustrating, and it becomes a bit of a cycle.

Then again, I don't understand why people take issue with literalism. I said exactly what I meant, no real nuance at all, why did you think I said "I Have to," instead of "should I"? That changes the context immensely, and lead to this huge misunderstanding...

Anyway...tangent on miscommunication aside, I am realizing that I am being more accepting for myself and my quirks, but that is leading to a lot of shifts in what I do that is rather difficult. Or, as has been suggested earlier, I probably was having an overload that made all of this come out more to begin with, and I am just seeing it as being ok or normal for me.



A_minor
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02 Aug 2021, 4:18 pm

starkid wrote:
People are strongly motivated to start seriously considering what may be wrong with them when their functioning begins to decline.

So diagnosis likely roughly coincides with an increase in autistic behavior because a breakdown in functioning prompted the autism evaluation and caused the behavior.

This, basically, as far as I'm concerned.
About five years ago now, diagnosis 6 months after. Never went back to being "normal", don't know how, don't think I ever will, don't care. Lost my capability to mask, I guess. Did go through a period of about a year, after my diagnosis, where all my autistic traits seemed magnified, until I cooled down.


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Mountain Goat
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02 Aug 2021, 4:22 pm

Something Profound wrote:
Mountain Goat wrote:
Ignore what I wrote as I go off on tangents. I have not been assessed yet but the answer to your question is "Yes".


I am known to do the same thing, though not to the same extent. We are all different though and do things differently, so don't worry. I expected there to be some long winded posts.

I think one of the things I am doing more frequently is giving myself permission to do my quirks openly. I am sure that it will take a long time before I am fully comfortable doing things in public that I do privately (Rocking back and forth isn't something I would be willing to do in public consciously, though I have caught myself unconsciously doing it on occasion). But instead of allowing my natural inclination to repress those traits and quirks, I am allowing myself to do it because it is ok to stim, it is ok to acknowledge that I have a hard time emotionally tethering to other people's joy and sadness (Though I have to accept that they have those feelings and need to experience them), and it is ok that I think strangely. One of the things I wish that would happen less is the frustrations I get over expressing myself. Before I realized I was likely on the spectrum, I would be mad that I'm not being understood, but it wouldn't be anything more than, "OK, this is a miscommunication, I need to try again when I'm not as mad." Now it is, "I know what I want to say, I know that it makes sense to me, why is it that no one else sees that this one word I am using in a sentence is crucial for understanding what I mean? Yes, communication is hard, but *I* am the one who is supposed to have deficiency here, not everyone else!" And yeah, that isn't really true, but it comes out when I am frustrated, and that makes it even more frustrating, and it becomes a bit of a cycle.

Then again, I don't understand why people take issue with literalism. I said exactly what I meant, no real nuance at all, why did you think I said "I Have to," instead of "should I"? That changes the context immensely, and lead to this huge misunderstanding...

Anyway...tangent on miscommunication aside, I am realizing that I am being more accepting for myself and my quirks, but that is leading to a lot of shifts in what I do that is rather difficult. Or, as has been suggested earlier, I probably was having an overload that made all of this come out more to begin with, and I am just seeing it as being ok or normal for me.


I get issues when people hint things and assume I get the hints when I don't, and later they get upset with me because I did not get what they mean so I did not do what they expected me to do or react like they wanted me to react etc.


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HeroOfHyrule
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02 Aug 2021, 5:18 pm

I have known that I'm most likely autistic since I was 11, though after I got refused a diagnosis again at 16 I masked more than I ever had before, until I hit really intense burnout at around 18-19. I spent a long time wondering what was wrong with me until I learned about autistic burnout, and then it "clicked" that I really am autistic. After that and after coming on here around that time I haven't felt the need to mask as much, and haven't really fully "recovered" anyways due to continued stress, so even if I wanted to mask as much as I used to I can't do that now.



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02 Aug 2021, 6:33 pm

Diagnosis provided
1. Explanations that my problems were not solely due to character flaws but my "brain wiring"
2. Realization that a lot of masking or pretending to be normal had harmed my mental health.

Therefore being more my myself (being "more autistic") is beneficial to my mental health.

There is probably something to the proposition that recognizing my autistic traits are autistic traits make me think I am acting "more autistically".


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