Informal survey/your story re: undiagnosed most your life

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Still undiagnosed but looking to get diagnosed as soon as possible because I can't handle more burnouts and I feel like I need external help to manage them (I live alone unless you account for my two cats).

Anyway, my story's kind of very long and complicated, but the shorter version is that I suspect I had Asperger's but I pushed it aside because I couldn't relate to the stereotype. I also figured it's very unlikely I had it anyway, given it's a rare condition and it's a known problem among psychology students to overidentify with various diagnoses once they learn about them. Like many, I ran across it because I just needed an answer why I had always felt so different, which took me down the rabbit hole of psychology and sociology that are still two interests that are with me today. I used what I learned from these and other sciences to compensate for my lack of innate understanding of social relationships.

The thought has always kind of been there though and I don't know why, because a lot of the time when I look up online diagnoses and read about them, maybe they can stick with me for a while where I go "Sure, I can see myself in that and that makes somewhat sense", but eventually it just fades away. Autism never did. And frankly, back then, I didn't know that much about it beyond what I found on Google, and since this was in the 2000s, the information about the diagnosis was not very accurate either.

No one has pointed out that I seem autistic though. Instead I've managed to slip under the radar of many therapists and even the psychiatrist who evaluated me for my gender dysphoria. Then again only one therapist thought I had PTSD and not a single one has picked that I probably have alexithymia. So for me it came as an epiphany where I suddenly saw my life in a much bigger perspective than usual and realized what I thought about myself and my life wasn't quite what I thought it was and actually hit a lot of typical traits, just not in the way the stereotype always describes them. So I have spent the past weeks reframing the person I thought I was and I see how more and more things just click into place, really. Also, hanging out in autism meeting spots online and talking to other autistics and to take part of their experiences has helped a lot, though what really sealed it for me was the topic of monotropism and the theory of mind, because these two theories explained so many of my struggles both in daily life and social relationships. It was that golden key to explain the theory of all social relations I had been looking for but never found before.

Way back last century, someone watched me write a 2 page program in raw 8080 machine code and was amazed to have it work first time.
He suggested I might want to join Mensa
After taking a test (and not doing particularly well, due to a preponderance of a type of question I was never good at... "What is the next number in this sequence". I would arrive at several possible answers and ALWAYS select the wrong one)
On finding out the reason for the existence of Mensa, I researched further.
I don't remember where or when I found out about Asperger's, but I remember reading "Running with scissors" and thinking he was a luckier version of me.
A little more research gave me my epiphany.
It may have explained my whole life, but this knowledge had little practical application.
I was high functioning enough and extroverted enough to have faked my way to normality.
I was unable to quiz my mother about my childhood. She died around this time, and Dad had died in the 80s.
It was several years after this when a paucity of "friends" (I'd shed 2 peer groups thanks to depression) let me find WP, and I lurked for a long time.
A psychiatrist recently offered to confirm my self diagnosis, but I still see no point, other than to be able to attach the label "confirmed" in here.
I already have a physical disability pension.

My problem now is isolation having retreated to a farm and become reclusive
All my social skills have atrophied, and my 3 closest friends have died.

I had a music teacher start talking about it in her office, can't remember what the context was.

pretty quickly, the thought started to creep in.

(this was 2009, no instant internet access) At some point I sat down at a computer and looked it up, and it was....not immediately obvious, but actually kind of terrifying. If memory serves, I tried to deny that this could be me, but it became very hard to deny and seemed very specific to my life.

That night, I asked my father, whose weekend it happened to be, and he confirmed it.

It was........

you know, I had gotten so good at normalizing adversity and trauma that I kind of instinctively knew I needed a reset. Rather than try to hash it out with anyone, reveal it, or save any relationships I had ruined, I knew I was going to college already, so I figured that when I left the state, I'd have a pretty good opportunity to start fresh.

Didn't quite. College away from home was quite the adjustment. Ruined a brand new set of relationships, some of which still hasn't been cleaned up as some are still colleagues. Thankfully, the relationships I care about the most have lasted to this day. The people who trusted me then still trust me 15 years later. It is an amazing feeling. I sincerely hope everyone here gets to experience it. The feeling that you actually belong in people's lives still makes me want to cry, and puts the biggest possible smile on my face

I guess I'll just add that it didn't feel like a whole new life. I don't think I would've guessed autism when I was 17, but I knew something was up the whole time. Learned to mask from watching TV, without any idea of what masking was (pre-broadband 90's!) Had very few friends at any given point. I knew I was bad at socializing and was worked hard to fix it without having an understanding of what I was doing or why. Sure, I was burnt out and miserable, but I never needed a name for what that felt like. When I found out, I lamented everything that had been broken and, as previously mentioned, figured it sure was convenient that I was about to get a fresh start anyway.

Yes, it was sad to realize that high school had come and gone with no awareness of what could have been done to help me, as my parents didn't want me to know, and the early childhood intervention had come and gone without putting a reason behind it. I guess I didn't understand what difference it made.....especially back in 2009.

I think now I'm starting to understand that it might help to know people who have gone through something similar, maybe just for the sake of my sanity. I'm surrounded by neurotypicals, and the relationships with them that I care about are incredibly rewarding to me, but there are some things maybe I'll come to understand better here. I can't even really explain it yet, but I wonder if I might be more comfortable....with certain people who are even more like me? Maybe I'm starting to recognize that the toll will only really be understood by people who have gone through it. Damn, it's crazy to think that now. Spent all this time thinking I just had to adapt and deal with it, that no one would ever understand because the neurotypicals thought I was neurotypical.

Not quite. They never had to know......damn, this "secret world" stuff is really a burden, isn't it?

(edit: I realize now that I was *not undiagnosed most of my life,* but rather, in the dark most of my life. Does that count? Is that okay? Certainly feels like some of the previous stories to me, even though I did receive early childhood intervention)

It came in spurts. Some magazin articles. Some old school online "what's wrong with me" tests when I was still in school and struggling. Not fitting in, not understanding why I struggled socially etc. I always scored high for ADHD and ASD, but since this was back in the late nineties/early oughts, the information I found online was awful and made me not want to go down that path further.

Revisited ASD a few times over the years, but there were always aspects that made me reconsider (also didn't know how to get help in the first place).

In my mid-thirties I really struggled at work with what I now know was my ADHD. Got on a waiting list for diagnosis, got therapy, but the more I talked to other people with ADHD (with and without comorbid ASD) I realized it wasn't the full picture. Luckily managed to get diagnosed pretty quickly. Finally feel like I'm starting to understand myself and have some hope of building a healthier life for myself (massive burnout every three-four years was not great). Exactly no one in my life is surprised I got diagnosed.

When my first child was diagnosed with autism, a neighbor who taught special education suggested I might have a "milder form" of autism. If you're interested in more detail, there's a link in my sig.

I noticed that the lead character of the show ‘Bones’ was like me. Then I kept on reading her described as having Aspergers. I thought oh, I probably have it. At the time it was a mild curiosity. It would take my life going nowhere and a soft intervention to take it seroiusly.

In my sixties, my daughter asked if I thought her husband might have aspergers syndrome. I had never heard of it though I did have some vague notion of autism. I went to the library and found Tony Attwood's book "The Complete Guide to Aspergers Syndrome". Read the book from cover to cover, recognising both myself and my son in law in different parts of the book. I am glad I found Atwood's book purely by chance because I realised later how much more respectful it was than much of the Aspergers info of the time.

I am 71. I was born 7 years after Kanner description and nearly 40 before Asperger published. SPED law was enacted after graduation. I worked for a "celebrity autistic" who was a terrific guy. I learned so much. He kept telling me I was autistic. I thought he was just flirting. Later in school I took a class about "autism". The S&S of autism was my typical. I didn't realize I was so abnormal. But I did learn a lot about NTs

I was feral. I ran wild and free all day climbing tress, playing in the creek, pick-up games of kick the can. I had to be home when the street lights came on.

Sing-a-long with Mitch Miller taught me to read before kindergarten. Not sure when but I was still 4 when I started K.

I shut down like ft knox to get through school, but am very-well self taught.

I graduated from the school of hard knocks after raising twins by myself. I am a "1099 traveler" and so lots of job changes are expected.

Medical fields, esp hospitals, are the easiest. All they ask for is competence. Excellence is rewarded.

Schools were tougher. They range from hierarchies, in which prioritize position in hierarchy. Excelling is forbidden and eliminated. To amazing educational facilities that prioritize the education & welfare of the child and were delighted with an educated, experienced colleague with both OCD & ADHD

But I am entirely alone.

Worked with autistic kids for years. Could almost immediately recognize when someone was autistic. Thought I knew about autism because I could recognize it in children and teens. I realized that I really liked talking to autistic people, because they actually said what they meant instead of using coded, vague language. I recognized this and would even share it with people. But since I already had been diagnosed with ADHD and OCD, it didn't even occur to me that I could have another diagnosis. I just thought I liked the way autistic people communicated. I started telling a few people close to me that I should just start telling people to talk to me like I'm autistic, since I liked to communicate that way. At one point, I started recognizing that I might have it, but had no idea what the concept of masked autism was and figured I couldn't have it unless it was diagnosed when I was a child.

Then, I started watching Love on the Spectrum on Netflix. I'm not going to go into my opinions about the show, but when watching Katelynn Parlowe on the show, I realized that she talked and acted exactly like me. Maybe it wasn't so crazy after all that someone could be autistic and go undetected for so long, so I started exploring with the idea. I would kind of feel out people's reactions when I mentioned that I liked "autistic" communication to see how they reacted. When I said this to my sister, she asked me if I had ever considered that I was autistic. Just her asking this was huge validation for me that I wasn't "making it up" or trying to be unique.

I came home and told my husband about my conversation with my sister and said that I was starting to seriously think that I was autistic. He said, literally, "I've known you were autistic for years." I died laughing. I said, "Why would you never mention that to me?!?" He said, "I didn't think it really mattered or made any difference." Turns out, finding out made a huge difference .

Yes, I find these online tests a wondrous liberation from a lifetime of self-doubt, confusion, alienation. A light bulb went on in my mind, like Aha! So that is why I experienced this, that, and the other. That is why I felt different. Before, I didn't know.

I take a new online test every so often to see whether I'm cured

Today I went to https://exceptionalindividuals.com and took their test. It is short and easy.

"You have significant number of autistic traits or tendencies

Your results from your autism quiz showed signs of someone who has a significant number of autistic traits or tendencies

This indicates that seeking further testing from a healthcare professional is a good idea.

Your quiz score suggests you might benefit from additional support, we encourage you to take advantage of our free workplace needs assessment. This personalized evaluation can help identify areas where adjustments could significantly improve your work experience."

Might be a tad late in my case

I did make adjustments on my own though in order to survive out in the workplace.