Informal survey/your story re: undiagnosed most your life

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Just wondering if anybody here who've gone most your life w/o being dXd, or still aren't... what was the thing or things that caused you to look up autism/Asperger's?

With me, it was when a person at a community garden my ex and I were helping establish became really upset at another person there, and in their rant about the other person, they mentioned "He must have Asperger's or something!"... so, later on, I looked that up...


AND MY ENTIRE WORLD CHANGED IN AN INSTANT. Everything I read after that just confirmed, confirmed, confirmed.

My daughter and I were out shopping for bedding in a department store. I was really fussy about the textures and colours of everything and couldn't choose. (I still haven't, more than five years later .... ) The bright lights and the music were driving me crazy and I had a meltdown causing me to sit on the floor with my hands over my eyes / ears. My daughter who was about 19 or 20 said "You know you're autistic, right?!" She said she'd known it her whole life and she thought I knew too, but for some reason I didn't talk about it so she hadn't asked.

I went home and googled. I still wasn't sure what it was all about. Right around that time I also happened to google something about light sensitivity which brought me to Wrong Planet. Then I knew for sure, because of reading first-hand accounts instead of formal research articles. I scheduled my assessment and was dx in April 2018.

I was always aware i was different. I researched a lot about personality disorders/developmental disorders bc i could not connect with anyone and there was always a hidden part of me i did not share with people (stimming, doing things the same way over and over again, obsession with objects, no friends etc) At age 20 i decided to see a psychologist.
As of now i am still not formally diagnosed bc i live in a country where such things are not known. But i have come a long way in accepting and supporting myself on my own. I stopped hating myself at age 25

Still undiagnosed

Started as a joke, my daughters gf kept saying I was autistic.
Then I mentioned to another teacher that I always seem to like the autistic kids best and she said “that’s because you’re autistic.” Silence. Other teacher “what? You didn’t know that?”
Then I had a girl in my class who needed a lot of support and I started reading books on autism in girls, which was basically an overview of my childhood/adolescence.

Then I took an online test and I can’t remember my score but it was in the “go get tested because if you aren’t autistic you basically have a bunch of other things you need to deal with.” Range. Like, more than 80% probability.

Then I just figured - as I asked a student a few weeks ago when out of nowhere (well, there was a balloon incident and her brother is autistic and she’s been in my classes for four years) she asked if I had ever thought about getting a formal autism diagnosis “what good would that do me?” So, looks like a duck, quacks like a duck, walks like a duck…. Either a duck or a witch.

It has been helpful in arguments/discussions with my husband to be able to say “look, this is how my brain works. And it’s not wrong. It’s just different.”

^ Interesting that you mention being a "witch"...

My mother, who I have little doubt was autistic as well, liked to refer to herself as the "green eyed monster/witch" when she left "mean" to-do notes for me and my sister.

Also, I've noticed several times now, in my reading of other "autists'" stories, either here, or on other platforms, and even with a former classmate I reconnected with, that many women realize they are autistic when their children are diagnosed. I suppose now that also goes for those who work with children.

And yes, it's a difference, not a defect.

My daughter wasn't diagnosed when she told me I was autistic.
She didn't even think she was on the spectrum.
I was diagnosed L2 and had to push her to go for assessment.
I guess she realised her traits were nothing like mine.
She ended up being HFA, so that explains the difference.

Why was she jealous of you?

The term "green-eyed monster" was coined by Shakespeare, in reference to jealousy.

It comes from the idea of "green with envy".

Monty python - if she weighs the same as a duck, she’s a witch.

Thank you both. It makes it little more sense now (I always thought she used it bc she was mean, which, actually, she probably did) (She used other lit references through the years, as well) (she made up stuff, too)
So much about her was misconstrued/misunderstood.
*sigh*

It may be impossible for me personally to ever get a satisfactory result on an autism screening because decades of masking appear to have given me schizoid personality disorder. It's basically the most extreme form of masking before you hit outright catatonia. You're talking person inside of person person inception s**t.

It's also probably where the refrigerator mothers hypothesis came from as while ASD is a neurodevelopmental condîtion, ScPD is a personality disorder that is heavily influenced by upbringing.

It's likely why the autistic traits went unnoticed. It's also why ABA needs to be used with caution. If you've used it enough to make the ASD go away, you've probably created another schizoid and hopefully one that still cares about the suffering of others.

Googled "low spatial" "high verbal" ----- NVLD -------Autism That was around 1999. NVLD made sense. I'd been wondering for a while if there was more going than just SMI. Tried getting more help - refused. Persistency got me labelled as 'awkward,troublesome and demanding' 'very dependent narcissist' . Diagnosis changed to personality NOS from schizoaffective mixed type in 2005.By that time I was totally demoralised. Didn't have the strength to fight for what I knew to be right. I resorted to using comments like 'so so', 'not too bad' . It took a few years to try again.Persuaded my then care coordinator to get me an extra appointment with a pdoc to discuss my concerns . That was an effing waste of time . He asked a few totally irrelevant questions , before angrily stopping. That was around 2008- 2009 . 2009-2017 I made occasional attempts to raise the issue, only to be constantly ignored.

2017 moved to the west of England . First appointment was in October 2018. My daughter who was with me mentioned autism . Instead of being dismissive he took the time to ask a lot of questions , and had me do some tasks with my hands( from which he said I was quite dyspraxic) At the end he said autism and schizophrenia were the most likely diagnoses. 2weeks later I got a letter saying I'd start being assessed in February 2019. Was dxed with Asperger's in May 2019. It had taken 20 years . A scandalously long time.

When I was in my late thirties my psychologist said he thought I was a high functioning autistic.He had experience working with autistic adults.I didn’t believe him, I thought that autism meant you didn’t talk and spun things all day.So I did research and realized he was correct and then it all made sense.
I found WP and my people.

Fall of 2020, my wife of four years pleaded with me to get tested. So at age 60 I did. Bingo.

I doubt I would ever have self-diagnosed myself. I didn’t actually start reading and learning about autism until eight months after my diagnosis. I literally put my diagnosis in a drawer and didn’t look at it for eight months. Once again my wife had to plead with me.

Prior to my diagnosis my older daughter, who was suffering from depression, PTSD, eating disorders, and borderline personality disorder, was tested and found to be NT. When her mother, my ex-wife, learned I had been diagnosed with ASD, she said had suspected that for a long time. She thinks and I think that had we known this 20 years ago we could have worked things out.

After working with people with autism and other developmental disabilities for over 20 years, I happened upon an article about high functioning professional women with autism. Bingo! Suddenly all the weird stuff in my life made sense. I was just two months short of my 64th birthday.

In the late 90s I read a book review about a book called Shadow Syndromes, about conditions that can manifest in more attenuated ways than the (usually) more-recognized full-on condition. One of the chapters was about Asperger's. The review included examples from the book, of a man who couldn't learn to dance and a little girl who played sports but couldn't understand the purpose of chasing the ball or of the whole endeavor (it was more detailed but I don't remember now), and these just struck me as being similar to myself. At the time I tried to see a psychiatrist who listed autism as one of his areas, but he just told me I couldn't be autistic because I don't speak in a monotone voice. It was a dead end. And I still don't have a diagnosis, although the therapists who have known me the longest all said that they believe I am on the spectrum.

My experience mirrors others in this thread. Basically a lifelong experience of being the odd-one-out. Difficulty making friends. Intense special interests (although mine tend to be short-lived which doesn't seem to be the norm). Sensory difficulties. Discomfort with eye contact. Difficulty recognising people out of context. Delayed emotional development. Shutdowns. Seeking solitude. Repetitive behaviours.

Always thought I was just a weirdo, or somehow deficient. My 'autism' was a family joke. Like many, they and I didn't know a person like me could be autistic. We had the 'Rain Man' stereotype to work from and that was it and that's not me. I can't remember when I started to take it seriously. Probably 10 years ago. But it's been a gradual awakening.

I've sought diagnosis through the NHS but I come up against gatekeepers all the time and I've yet to find the fortitude to push through. They told me that since I can hold a job and have a partner, there's nothing they can do for me in terms of support, so there's no point them assessing me properly, and the waiting list is years long. They only seem to want to assess people if they can't work and are seeking disability benefits - and I don't want to be the reason that someone can't that sort of help. It's a postcode lottery in the UK, in another area there might be a better service. I too have had therapists and teachers suggest that I'm probably autistic. My partner says ADHD too, I don't know about that.

I'd have to have a lot of spare cash floating around before I'd consider spending the £900 or so it takes to get a diagnosis privately.

So I remain undiagnosed, but it's helped me enormously to reconsider parts of my life that have made no sense, and actually caused me to think badly of myself, in the light of me being somewhere on the spectrum.

For example, I understand now why most people don't hate pubs like I hate pubs. It's not because I'm just a miserable sod who can't get on with people, it's because they have no problems processing people's voices against the background of noise.

I don't just naturally have 'a pained expression' - I'm screwing my eyes up because even overcast sunlight is physically painful.

People aren't just getting randomly angry with me, I'm just not picking up on the clues that I'm annoying them.

I go easier on myself now. I think that would be even easier with a medical diagnosis, but I can't see a path to one currently.