Informal survey/your story re: undiagnosed most your life

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I'm not entirely sure if I'm offically diagnosed with autism or not. After I graduated high-school my mom told me she thought I was autistic since I was a toddler but my GP laughed & said "Nick's just being Nick" I've been diagnosed with dyslexia & ADD since kindergarten but professionals didn't think autism till I got recertified for dyslexia accomodations during the summer between 9th & 10th grade. He wasn't qualified to diagnose autism thou. Since I was already receiving all avilable accomodations in school my parents didn't think there was any benefit of getting me diagnosed with autism. Plus my parents were concerned about the expense since they both worked very hard to be lower middle class. I had various medical issues that I needed doc appointments for & my parents had to miss work to bring me to appointments; my dad was self-employed & only got paid for work he did & sometimes there wasn't much work avilable.

I looked autism up after mom told me & I thought it fit me but I didn't really dwell on it. I always knew I was very different but I had assumed it was due to my dyslexia, ADD, & having physical disabilities others couldn't understand or relate to.

When I was 20 I had a mental breakdown partly over my 1st relationship ending. She had dyslexia & ADHD & was the 1st person I really connected with. I had also been trying to get my 1st job for a year & my mom was majorly on my case about me not trying due to being lazy even thou I was putting in apps for any place & job I thought I might could get to & do but I almost never got called to do an interview.

I was highly unstable & having rapid mood swings, felt great & energetic some days but had crying spells every night. I had some delusions & sometimes wasn't quite sure what was real or made up in my own f#cked-up head & the delusions triggered bad panic attacks. I saw my ex bragging online about how she drank soo much a couple days before that she was brought to the hospital & had her stomach pumped. I lost it & watched my body slash my upper arm 9x. My parents brought me to the ER & I got diagnosed with bipolar depression.

I started seeing a pyschiatrist & durring my 1st appointment she said I had Aspergers, depression, Borderline Personality Disorder, & codependency. She referred me for Aspergers testing. The guy diagnosed me with Aspergers Personality & said it was due to Schizoid Personality Disorder & not anything on the autism spectrum My report also said I had depression, Borderline Personality, & fit all the features of Schitzotypal Personality but did not have Schitzpal Personality. That was a couple thousand of my parents bucks well spent

I know now that a lot of my non-autism symtoms at the time were due to psychotic depression & bad anxiety & OCD. I tell my GP type docs I have Aspergers & they don't doubt it & list it in my chart. I saw a different psychiatrist a couple years ago for like a year & a half who also said I have Aspergers. I quit seeing him cuz he quit practicing at the health center. He was gonna refer me to another psych but I had been doing mostly OK for a while & wanted my GP to start prescribing my psych meds again.

I've just been diagnosed at 45, I've been completely unaware all this time.

I did an online test because my son was struggling with some things at home and the topic of autism came up - it was a oh lets do this test for curiosity and my scores were in the "go get tested range". After doing every test on the internet i could find my brain 100% held onto it and I just kept coming back to it, unable to put it down as a possibility. So i resolved myself to look into properly with an assessment.

What freaks me out now is I'm learning that my awareness of my self is apparently quite different to how other people have seen me and this has been a bit of a revelation. I've struggled with lots of stuff around friendships, deep interests, sensory difficulties, emotional processing, shutdowns, solitude etc etc and always camoflauged those aspects of me not only from the world (or so i thought), but actually from myself too. It's like I have developed some maladaptive ability to compartmentalise myself and suppress them to the point of complete denial of existence. I find that a bit scary if i'm honest, it gives a very fragmented sense of self.

because of this i went for a formal diagnosis - i think without it i would just carry on with this compartmentalising behaviour - because it's been such a lifetime practice.

It's pretty hard trying to break some of those walls down now.

Welcome to Wrong Planet.

It is fairly common that adults to come to realize they are autistic when their children are diagnosed. There is a strong genetic component to autism.

I would advise two things. Patience and letting your autistic brain do what it needs to do to process this new information. You have been suppressing your autistic self for 45 years so it is going to take some time to find out who you are. There will be ups and downs and all sorts of emotions. This is all part of the process. It might seem daunting now but you have already taken some important steps.

Good luck. Let us know how it's going. Feel free to ask questions or just vent.

Hey thanks for the welcoming message! Nice of you to add this to the end of the thread

You are welcome

I ran across a post about how being overly compliant and overly polite is just as much of a red flag for autism as is "rude and says things that are inappropriate". So I did some research and eventually paid for a diagnosis.

when i was in single digits [age], i was dx'ed with being schizoid/schizotypal [two different school kid shrinks], then later on in adolescence was dx'ed with what was then called ADD, but not medicated, shrink seemed to think i should just jerk myself up by my own bootstraps and encouraged my parents to be hard on me/ride me. that didn't work for me or for them. ended up in army, social worker there said he thought i was autistic but high-functioning, i put that in the back of my head for a while until about 15 years later, was very depressed and saw shrink who tested me for ADHD inattentive subtype and put me on norpramin [stimulating tricyclic] and later methylphenidate. those drugs just made me angry/irritable and made me lose weight that i could barely afford to lose. then they tested me for AS and BINGO!! shrink said "i'm sorry sir, but there isn't much i can do for you." my primary shrink prescribed me Strattera [magic drug and i dearly miss it but joe insurance stopped covering it as it cost $20/capsule]. the year that i was on Strattera, i felt subjectively "normal" [calm AND alert, a rare combo for me] for the first time in my life, i could talk to people and understand what they were saying, even their body language which normally sails over my head. i tried to titrate myself off of strattera when joe insurance said i needed to pay for it meself, but it was still a hard let-down. i took up extreme exercise [biking up and down hills and a form of parkour] which helped with anxiety issues [too GD tired to worry anymore] and gave me a few more neural connections in the social department [holding it together and the schizo stuff at bay] within well-defined limits, but didn't especially help me to be for long inside the magic intersection of calm AND alert. old age at present means i can't do the extreme exercise anymore, so i just segregate myself from people, so nobody is offended at my natural state of awkwardness/cluelessness and i stay outta trouble that way. peace and quiet in solitude.

I'm 65 and retired. For the last several years of her life, my late wife kept telling me she was sure I was on the autism spectrum. After doing some minimal reading, I told her that yes, I might have some borderline autistic traits, but what did it matter? I retired from a job I'd held for 32 years, we were married for 20+ years, I had a few long term friends, and really didn't care for more. Being retired, getting diagnosed wouldn't be of any benefit job-wise. She didn't seem to like my view, and continued bringing up my being on the spectrum whenever she was frustrated with me about something. What I didn't know was that she was freely sharing her opinion with friends and even relative strangers. About six months after she passed away, a friend casually mentioned how she had been sharing her opinion about me being on the spectrum with our AirBnB guests (we have a primitive campsite at the back of our property and rent it out through AirBnB). This revelation for some reason made me angry, and I decided to settle the issue once and for all.
I had expected to MAYBE find that I was borderline autistic. I was completely stunned to learn I am well into autistic territory on every test I took. (I was too skeptical to accept the initial assessment. I ended up taking something like 10 different tests before I surrendered).
So, being the analytical person I have been since early childhood, I wanted to know what it was that I was apparently a classic example of. I did a deep dive on all things autism, but primarily on Asperger's since that was what I was told (even though it's now been rolled into ASD1)
Again, I was stunned. It was like reading my own life's history. I had always just figured I was uniquely weird (or maybe "eccentric"). Suddenly I find that my quirks are well known, and instead of being a freak I am a member of a well documented subset of humanity.

^^^welcome to our club, CampingBare

My parents told me when I was about 10 that they suspected I was autistic when I was an infant. I'd always felt different growing up but didn't really think too much about it until after having worked in the human services sector for a little while and noticed that my approach to working with people was pretty different to my colleagues; I do not get attached to clients, while I cared enough to want to help I would see them as more of a puzzle/challenge and wouldn't get emotionally invested in them or their stories, where other workers would be really affected by hearing traumatic histories I really just found it interesting. At the same time it became very apparent that I did not want to socialise with anyone outside work, and had an almost allergic reaction to what I consider ridiculous social conventions (celebrating birthdays, Christmas etc in the office, giving cards for any random life event, chatting about the latest TV shows, football etc etc). Then there's the burnout...

Went down a rabbit hole investigating SPD but came to the conclusion that besides the social aversions it didn't quite fit.

Started looking into ASD a bit more, light bulbs started going off so found the AQ online. I thought I would be somewhere around or below the threshold. scored 37 and went uh-huh... Sat on that for a few years, ended up getting promoted to a leadership position which eventually brought all of my stuff to the surface and forced me to look into getting an official diagnosis which is almost complete. I have been told by the clinical psych overseeing it that they believe I have ASD and ADHD and am now waiting on the final report which should arrive not long before I turn 44.

I’m one of the oh so controversial TikTok self-diagnosed people.

I’m just about to turn 49. A few months ago, one of my partners had been diagnosed with ADD (we had known that for years but he was finally getting treatment) and was watching TikToks to kind of crowd source ways of dealing with it more effectively. Since ADD and autism are common comobidities a lot of people he was seeing were also Autistic. He noticed a lot of things clicked in that direction so he brought it up with his therapist. He had a list of common autistic traits, especially ones more commonly seen in afab (assigned female at birth, relevant as we are both trans men), and I was blown away. I felt really represented in that list. It felt like a lot of frustrating things in my life suddenly made sense.

Looking back it shouldn’t have been all that surprising. My mom took me from specialist to specialist as a toddler, insisting that something was “off”. She even said she suggested to doctors that I might be autistic. But it was the mid-70’s, I was afab, and considered well-behaved. They said I was just painfully shy and maybe more “sensitive” than other little girls. They told my mom to push me to socialize more and ignore or punish my more “odd” behaviors and I’d turn out “normal.” I wish she were still alive so I could ask her more questions about what exactly she meant by “odd behaviors”. I can guess at some of them but I really wish I had asked.

Anyway, after seeing that short list from my partner, I talked to my therapist who sent me embrace-autism dot com saying a colleague of hers used it for clients who can’t afford to get evaluated. It, of course, isn’t as in-depth as a professional evaluation but I found it rather affirming. After that, I talked to my doctor, a behavioral health counselor, my psychiatrist, and my procedural psychiatrist who all feel pretty confident that I would be diagnosed if I had the resources. I wanted my whole mental health team to weigh in. It’s the best I could do since Medicare won’t pay for evaluation. I certainly can’t afford it. I’ve been on permanent disability for the last 7ish years due to severe depression and anxiety.

Even after all that, doing the absolute best I can with the resources I have available to me and coming to the reasonable conclusion that, yes, I am autistic, I still have moments of imposter syndrome. Or even double imposter syndrome. Where I’m agonizingly masking my way through something in society and so feel like an imposter in the “regular” world but then feel like an imposter as an autistic because, well, I AM masking my way through this situation, right? Never mind, that masking is exhausting, feels completely unnatural, and will result in needing more down-time later on. Yeah, imposter syndrome is sooo fun. And gatekeepers make it so much easier to feel like you don’t belong anywhere, just because you don’t have access to proper healthcare.

So, yeah, TikTok resulted in the self-diagnosis of both myself and one of my partners.

A chance meeting with one of my son's college professors.  After we had talked for a few minutes, she asked a few odd questions.  Then she explained Asperger's Syndrome to me.  Something clicked.  We made arrangements for me to meet with a few other professors.  After the meeting, they gave their official opinion: Asperger's and/or PDD/NOS with elements of PTSD.

Then they congratulated me on achieving a level of professional success that not many NTs seem to achieve.

Whatever.

Everything I read since then about HFASDs and other people's experiences solidified my acceptance of their assessment.

LOL yes - quantitate science - like modern psychological “instruments”

Obscure, intense interests. Difficulties with socializing as a child (had friends but not “first picked”). Belief I was born in the wrong century. Stomachaches.

Learned to fit in better as I got older, but the disconnected feeling persisted. I was always the “last to know”.

I didn't receive a diagnosis until my late twenties, due to various failures of medical care under the healthcare system in my country.

It was a long wait to get diagnosed and to see the appropriate medical professional.

Always an odd duck - too weird to be normal, not weird enough to fit in with the weird kids. I knew something was going on, but I could never figure out what. Most people were dismissive that I had anything diagnosable - smart people are just eccentric and have trouble fitting in!

Over the last decade I've been picking up proverbial breadcrumbs. People would say something about another person with autism or ADHD, and I would go "huh" and make a mental note of it.

Finally one day a YTer I follow talked about how they might have ADHD, and linked to another video on the subject. That list video said things about ADHD I had never heard before, especially about how the hyperactive part can be mostly or entirely mental. It sent me down a rabbit hole. Because of the crossover with autism I was able to learn a lot about both.

I had trouble getting a formal evaluation until lucking into someone being able to refer me to a specialist in my area. Diagnosed in my 40s, to the surprise of many who know me, but the complete lack of surprise to some.