A VERY compelling late-diagnosis story...

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GadgetGuru
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16 Aug 2023, 10:56 am

Have a listen to this 26-year-old, if you have the time.
One of the most compelling and eloquent late ASD diagnosis stories I've ever heard...


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theboogieman
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16 Aug 2023, 3:35 pm

Saw this video last week. First time hearing of her.

Bits of her story sounded very similar to mine. Got me pretty emotional. Glad to hear she's found some understanding in her life as it's helped me out a good bit.


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16 Aug 2023, 4:51 pm

I'm a wee bit speechless, Gadget, but I'll try to reply.

To say she was "me" is an understatement.
There isn't one word I'd need to edit, add, or subtract, even in the details.



I'm "more than autistic".
I wrote 188 pages of info for my assessment.
I growled.
I was bristly.
Everyone thought I had bad behaviour.
My parents didn't know what to do.
I hid at school because school was so traumatic.
Adolescence gave me PTSD from which I never recovered.
It took me eight hours a day to decompress from school.
It was related to my quest for "normal".
I'm still questing, but I know we all are.
I had breakdowns about WTF was wrong with me.
When I was 14 I determined it was my life's goal to find out.
When I was 40 I took time off work to find out (and failed).
I can cry by thoughts and sensory on its own.
I can even have O's by thoughts alone (censored).
I had an online groomer.
There's the sensory and ... other stuff with sex.
There's the shaming for all of this. ^
I'm dealing with that right now by some bullies.
I read the same books repeatedly, hundreds of times.
I sensory-regulate with favourite tv shows (Flintstones in particular).
I have cats (five!) and red lights, and pillow forts.
I have issues with clothes and barely own any now, except pyjamas.
I have one pair of underwear (TMI) because nothing else is comfy.
I can't leave my house because of sensory (or needing underwear lol).
I live in NC headphones.
I want to not exist.
I tried desperately to mask or camouflage.
Masking never worked for me because I didn't even know how.


This was so nice to see.
It's stuff other people have said before, but I love how she said it.


Thanks again.


PS - I wasn't diagnosed until a month before 50.
Imagine that poor woman raising kids on her own, still not knowing.
That would be me.

Then add ADHD, but that's another whole topic.
I bet she has a vlog on that too.


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GadgetGuru
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17 Aug 2023, 9:11 am

IsabellaLinton wrote:
To say she was "me" is an understatement.
There isn't one word I'd need to edit, add, or subtract, even in the details.

I had to watch the video three times in a row, when I first encountered it. What she conveys is so densely packed that I couldn't take it in, in one viewing. It was only during additional views that I even heard some of what she had said, such is the torrent.

I have dubbed her "Lady Onslaught"...

Darron


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GadgetGuru
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17 Aug 2023, 9:13 am

This is Savannah as a teenager:



Darron


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IsabellaLinton
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17 Aug 2023, 10:00 am

Here's my notes from my 4th (or maybe it was 5th?) viewing:

I only listed the things that resonated, that weren't on my other list (some overlap)



very sensitive
no unnecessary interaction with others
headed away from the group to be alone
didn't smile or laugh
cried a lot
embarrassed all the time
clumsy
food pickiness
couldn't do sleepovers
loved dinosaurs and bugs
odd
could sense that people rejected her
middle school (Rob ... cough ...) :(
nervousness vs. confusion all the time
didn't know "social reality"
caused "a bristling ..."
making peers uncomfortable with personality
school was traumatic
straight A student
autism info wasn't available for parents
"bad behaviour and social rejection"
"I was bad"
Power of intent - trying to outsmart it
"I pasted endearing traits on top of myself"
Unsuitable for consumption
Alone in this life
Heavy feelings for a child
Wanted to not be alive
Depression
Anxiety
Exhausted
8 hour long "plays" at school (masking)
Angrier play at home for another 8 hours
Awareness that something was very, very wrong
Secrets = autism traits
"I do not make sense"
Weird flukes
Got groomed online
Eating Disorders
Relief / mourning imaginary childhood
Could have had an explanation and support - did not
There's no solution to leave autistic people unscathed
Social turmoil from school
"I found a home on the internet"
Having online friends / can't imagine life without it
Textbook listing of symptoms in her life
Inability to form substantial meaningful relationships
Big ideas about NORMAL :( (Rob) :(
"I'm doing something incorrectly"
Not trying hard enough
Told there was something to fix "with mental effort"
The gap between what you want and what you have
The gap is filled with shame ^
Can be with one person only
Meltdowns / retreat into head / psychic pain
No productive conversations
Grim / awful feelings
Possessed by MUD -- (I call my feelings a "mudslide" all the time!)
An adult who has tantrums
Humiliating to have meltdowns
Trying to be nicer to self
High rate of autism + fetish
Hyperfixation on certain aspects of sex
Sensory seeking sex
Shame about sex
Positive mysteries in life
Happy person / funny / laugh / curious / finds meaning
Single-minded work ethic
"Doing what ants do"
"I know my purpose at any given time"
Wanted to live by herself
Happy - very, very happy on her own
Love to read
Love my cat
Love being at home
Want to be with myself in comfy clothes at night
Emotional reactions - waves of feelings
Brought to tears by thoughts and everyday things
Psychogenic shivers (fission)
Strange lucid dreams
Relearning how to be alive
"Scraping shame from shame-covered things ..."
Instead of Penicillin watches tv to soothe (sensory seeking)
"Failures deep inside me"
"The good life has been eradicated from my body"
Change expectations to get through
Scared of negative reactions
Masking - Useful and helpful at times
The goal is to get to a place where I don't have to mask
What is life but a series of answers to questions?
I'm not a freak / I am a freak and there's a good reason
Even if people can't relate, they understand
Groups of friends get diagnosed
The population of a small country is contorting quietly
Trying not to inconvenience anyone
Feeling they have a "distinct lack" in them
Thinking of self as young child needing support
Exudes curiosity / gentleness


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17 Aug 2023, 9:59 pm

I'm in my 40s, have lived my entire life in America, and have never before heard the "May the dear Lord bless you" version of The Birthday Song before. That was...weird. And the steadily-building droning sound that soon followed in the video was like nails-on-a-chalkboard adjacent ear-splitting.

Much of what she says in the video is familiar with me.

I don't want a big friend group, but I don't even have a real small friend group anymore. I have a few close friends at this point but they all live far apart and far from me. I would even be satisfied with just one person, but I've been terminally single pretty much my entire life. Also, the person I've been closest too in my entire life is also ND (which is probably a big part of why we connect so well), and she's explicitly said she needs me to have multiple friends to share the load. She's got too much of her own stuff to deal with.

The metaphor that comes to mind is a three-legged chair. I'm too much for any one of the legs. If the legs were spaced closer they could support me, but I don't have any way to change that. The legs are also spaced too unevenly which makes the whole thing wobbly.

re: "Feeling like there's some distinct lack in them that could be repaired if only they tried harder"

This is the part of my ASD+ADHD diagnosis that was particularly disappointing, rather than a relief.

You can make all the arguments you want about not needing socializing or to fitting into society. The difficulties with friendships, relationships, communication, eating habits: all those pale it comparison to this fatal flaw. For us, the old saying "You can do anything you put your mind to" is rendered moot because our executive function is faulty. I'm literally incapable on the most basic level of being able to set my mind to something and "Just Do It." Oh, I might eventually accomplish tasks by some long and labyrinth path, but I cannot ever steer my life and bend the world by sheer, relentless force of my will. "You're not lazy and weak; a part of you has just been irreparably broken since birth" is not the least bit reassuring.



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18 Aug 2023, 12:12 pm

diagnosed in her 20s doesn't seem a super late diagnosis when seen from the perspective of an old lady who finally discovered her autism in her late 60s and was professionally diagnosed at age 68.

All diagnosis of adults is good, glad she found out early, her whole life will be different because of that.

There is no reason today why adults from 21 to 101 should not be diagnosed or have diagnosis as available to them as youngsters. Society, medical and scientific diagnosis have a load of catching up to do!


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IsabellaLinton
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18 Aug 2023, 12:57 pm

I agree. I wouldn’t call it a late diagnosis either. She found out a lot sooner than many of us here. I was about double her age.

Regardless that was a very accessible vlog and I’m sure it will help a lot of people, whether diagnosed or not.


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GadgetGuru
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09 Dec 2023, 6:53 pm

Savannah's latest thoughts on this strange thing we call "love"



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09 Dec 2023, 10:26 pm

I watched the entire video just now. I would have felt the same way about myself if I had to wait until I was in my 20s to get a diagnosis.


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colliegrace
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09 Dec 2023, 11:55 pm

A lot of this resonates, though I only watched about half. As a kid I growled too. I always thought that was interesting that I did that, I didn't know of anyone else who did. I never felt different per se.... I feel I was not very much into self reflection until my teens. I can say I don't think I related much to my teen peers at all, and I almost exclusively interacted with children 12 and under. I knew how to be a kid, I didn't know how to be a teenager.

In young adulthood I used to wonder about my tendency to obsess intensely, and had questions about that and also what amounts to sensory issues. Looking back, it's obvious now what those traits are from.

Here are traits my mom wrote down from my infanthood and toddlerhood when I was looking into autism diagnosis:
-less likely to point at things to indicate needs or share things
-may not respond to name being call but does respond to other sounds
-shows less interest in communicating
-have good rote memory (bible verses, songs)
-rocks, spins, sways, twirls fingers, etc (mostly with objects)
-likes routine, order, rituals, has difficulty with change or transition to other activities
-may be obsessed with a few unusual activities, doing them repeatedly throughout the day
-plays with parts of toys instead of the whole toy
-may have unusual use of vision or gaze, looks at an object from unusual angles
-may not keep eye contact
-show less response to parents smile or other facial expressions
-may not look at objects or events a parent is pointing to
-may not point at objects to get parent to look at them
-may not have appropriate facial expressions


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RAADs: 104 | ASQ: 30 | Aspie Quiz: 116/200 (84% probability of being atypical)

Also diagnosed with: seasonal depression, anxiety, OCD