A Lonely Wave Goodbye

[Crossbreed]

Not in any way contradicting your view or thoughts, but just to say that Leo Kanner was a psychiatrist who was one of the primary and early researchers into autism. Much of what we know and understand about autism derives from his work.

https://en.wikipedia.org/wiki/Leo_Kanner

More specifically, ASD2 & 3.
Asperger [discovered?] what we now call ASD1.
And Wing was the first to propose that autism was a spectrum.

Psychiatrists & psychologists who only acknowledge Kanner, in my experience, reject ASD1 & Wing. Kanner's patients would not have made it to 20 without a diagnosis of some kind.

 

[The Pandector]

@AO1501 said:
"The idea that we might never know 'who we are' if we don't get a diagnosis before we're 20 can really only be that by then, we have existed in society long enough to have learned masking techniques which eventually disguise the realities of us, even to ourselves. After that point, many of the signs and symptoms become entangled with the wider details and processes of life in general."

I was reading too much then to be clear now, but I believe this is the context in which I read it. Thank you for laying that out so clearly. It is the 'even to ourselves' thing that trips me up.

You said:
All the diagnosis did was assemble a thousand small parts of me into a whole, like a Lego kit, so suddenly I could see all of it instead of just the parts. The result is that I can look back on my life now that I am in the last stage of it, with a better understanding of who I always was, and why things happened the way they did.

My experience exactly. Like putting on my first pair of glasses. I hadn't connected that with 'who I am,' though; rather, with 'what whacked me up.' I guess I need to take ownership of my autism.

 

[AO1501]

More specifically, ASD2 & 3.
Asperger [discovered?] what we now call ASD1.
And Wing was the first to propose that autism was a spectrum.

Psychiatrists & psychologists who only acknowledge Kanner, in my experience, reject ASD1 & Wing. Kanner's patients would not have made it to 20 without a diagnosis of some kind.

You're certainly correct in the context of what is known now, but Kanner has been dead since 1981 (the year Wing identified Asperger Syndrome as an autism disorder), and much of what is now known, was built on his work.

I don't (personally) know of anyone who recognize only Kanner's work in this field, but I'm sure there may be some.

 

[Crossbreed]

I don't (personally) know of anyone who recognize only Kanner's work in this field, but I'm sure there may be some.

When I was shopping for a local counselor (after my Aspergers diagnosis), it was discouraging how many would recognize DSM-4's (Kanner's) Autistic Disorder but not Asperger's Syndrome nor Wing, generally. Further, some even insisted that those with Kanner's [now ASD2 & 3] would grow out of it by adulthood making it only a valid diagnosis in childhood...!

Their ignorance on the matter was appalling. There was debate in that community whether Aspergers/ASD1 was even a valid diagnosis for anybody. That made finding an autism competent counselor very difficult.

 

[The Pandector]

@Kayla55 said:
Did you find sometimes shocking to realise you were not a unique artist but don't had same experiences as others you never knew about?
And I thought I was only truly unique embarassing crazy misfit disappointment to everyone. You mean there are others who had this.

Yeah, I knew there were other people like me, but I had no I idea that so many of us share so many of the same traits.

You asked:
So before you go ....
Do you still believe they will cure us someday? Would you take the cure given your life, over or have you accepted some of us have it harder, never appreciated, mostly unrecognised or embarassing

Given my limited understanding of the science, I'm still pretty sure they'll never find an acceptable cure. Whoever it is I am, I would no longer be that person if my excess neurons were harvested.

I found one disturbing fact when on opioids before and after back surgery: opioids make me significantly more socially engaged. Always to prescribed dosages, not 'social' as in sloppy or slaphappy, but honestly more engaged in what was going on. My perception was that I was simply more interested. I didn't know I was autistic at the time, and found it spooky that opioids made me more socially acceptable. Still weird to think about. Anyway, maybe they could find a chemical solution to the symptoms, but that's not a cure.

 

[Crossbreed]

Given my limited understanding of the science, I'm still pretty sure they'll never find an acceptable cure.

ASD1 is autism in its healthiest form.
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

 

[The Pandector]

You're certainly correct in the context of what is known now, but Kanner has been dead since 1981 (the year Wing identified Asperger Syndrome as an autism disorder), and much of what is now known, was built on his work.

I don't (personally) know of anyone who recognize only Kanner's work in this field, but I'm sure there may be some.

Right. I'm not even sure it was Kanner who said it, and it seems from feedback that that's questionable. But the idea stuck in my mind, if not the reference. It clearly implies that there's a 'me' in there to be known. Today's answers are great, and leave me suspecting what I've felt all my life; there is no 'me' here, whatever the language of the quote may imply.

There might have been a me, in some other universe. But in this universe my me had to be discarded to free myself up for masking. In the end, as God would have events transpire, my head exploded.

Uniquely unaccomplished, I hear my own music and struggle to get it recorded. After all the instruments I've offended, I gathered up my pieces and put together a little studio. I've pretty much dedicated over a year to a book I don't expect will ever be read. These seem pointless, irrational. But they are compulsive and so I pursue them to quiet my soul. Maybe the pointless expresser is who I am.

 

[Crossbreed]

@The Pandector, if you were first diagnosed in your 60s, you are most likely ASD1, not ASD2/3. That is a difference, not a defect, similar to development among gifteds. You were not broken, just operating under an incorrect paradigm.

There was a time when left-handers were forced to use their right hands rather than receive necessary accommodation. That is what masking is comparable to.

 

[The Pandector]

@The Pandector, if you were first diagnosed in your 60s, you are most likely ASD1, not ASD2/3. That is a difference, not a defect, similar to development among gifteds. You were not broken, just operating under an incorrect paradigm.

There was a time when left-handers were forced to use their right hands rather than receive necessary accommodation. That is what masking is comparable to.

What a nice thing to say. Yeah, I figured I'm ASD1; I can barely keep myself afloat, on my own now. I guess I've never heard it put so generously. I don't hear today about ASD1 being gifted, but the counselors throughout school wouldn't let me forget that I should be doing so much better because I can take a test. I don't hear people talk about the gifted aspect of Asperger's, but of less desirable traits. Obviously, I haven't been hearing the right voices.

And, so true, I was operating under an incorrect paradigm.

 

[The Pandector]

@The Pandector, if you were first diagnosed in your 60s, you are most likely ASD1, not ASD2/3. That is a difference, not a defect, similar to development among gifteds. You were not broken, just operating under an incorrect paradigm.

There was a time when left-handers were forced to use their right hands rather than receive necessary accommodation. That is what masking is comparable to.

By the way, as a redheaded left handed stepchild, I was subjected to right handed furniture and ridiculous handwriting training. Fortunately, if I spent enough time in the pool each summer, the red was almost blonde.

 

[Crossbreed]

I don't hear today about ASD1 being gifted, but the counselors throughout school wouldn't let me forget that I should be doing so much better because I can take a test.

1. ASD1 does not mean that one is automatically gifted, but the two conditions are related.
2. A higher percentage of gifteds are ASD than are non-gifteds.
3. When both conditions occur together, it is called 2e.

https://en.wikipedia.org/wiki/Twice_exceptional

 

[Crossbreed]

I think the iq bell curve is just flatter in autism. It is said that man also have a flatter bell curve than woman.

Gifteds often have asynchronous development.* If it is asynchronous enough, it meets the criteria for ASD, but not all gifteds do so.

It is another form of neuro-diversity because it does not align with NT developmental standards.

*Asynchronous means that not all neurological traits develop at the same rate as is common in NTs. Some traits (like intelligence) develop ahead of the norm while others (like social skills) may be delayed or even halted. It is advantageous to gifteds & ASD1s as we retain our fluid intelligence longer in the trade-off.

 

[The Pandector]

1. ASD1 does not mean that one is automatically gifted, but the two conditions are related.
2. A higher percentage of gifteds are ASD than are non-gifteds.
3. When both conditions occur together, it is called 2e.

https://en.wikipedia.org/wiki/Twice_exceptional

Very helpful link.

At first read, 2e seems to nail me pretty solidly. I’ve been working with the understanding that there are high-functioning and low functioning autistic people, the difference being IQ. This forced a dichotomy on me, and the assumption that all/most ASD1’s have the same general profile that I have. I see now that this isn’t so.

The wiki piece points to the 70’s as watershed for a more holistic view. Growing up in the 50’s and 60’s, I was viewed by most as what was then politely known as a ‘retard’, but was viewed by the school as stubbornly lazy. Their test scores were backed up by the fact that ‘when I wanted to’ I outshined my peers.

As @Kayla55 pointed out, there’s a real rush to finding out that you’re not the only one living in bizarro world. When I discovered this forum (in the midst of a massive life-ending burnout) I thought I had discovered a whole gene pool in which I could safely swim, only to find that I was still floating in my own little bubble. I know it’s a mistake to compare yourself to others, but when you’re the only ambulatory tripod on the planet, it’s wonderful to find an enclave of similar life forms. I need to quit expecting to find close matches just for the sake of not feeling like the only zebra in the horse show.

 

[Kayla55]

Too much emphasise on professionals who can't give answers....

Parent's cursing doctors who keep changing meds they can't even explain how it works.
Heavy focus on types of diagnosis and other specifics...

I had interest in socialising but for various reasons didn't find it was working,
Narrow minded or shallow
Misinterpreting what I meant with limited perspective of your opinions

I think many parents just wanting ways to make life better, for parent and child...are keen to find out about progress.

Maybe I won't just facilitate my school, I'm going to ask parents permission to personally reach the low functioning class. It's just the way I am, give me a challenge and I will show you.

 

[Luca]

Sorry to see you go, if you're going to end up leaving. I hope what you've learned here has been valuable.
There have been a lot of times that I've felt like leaving here, but I found this community to be so helpful and supportive in a lot of ways that it's worth putting up with some of the not-so-great stuff that happens occasionally.

While we're on this subject, I want to share a similar thing that I've learned:
The people of this forum have helped me come to the conclusion that I am actually intelligent, and many have even told me so, despite the narrative I've been feeding myself for so long.

Being partially nonverbal doesn't mean I'm unintelligent, as I can clearly articulate the thoughts in writing. And the longer I'm here, the more able I am to say what I'm thinking, and the more people understand and relate to it.

I've mentioned before that in high school, I got straight A's, was in accelerated classes, graduated early, and got into every college I applied to. But people still told me that I was an idiot, because I had trouble expressing exactly what I was thinking verbally, and because I'm a visual learner and not really an auditory learner. So I started to internalize that narrative and believe it.
I felt like a failure because college didn't work out for me socially, and I struggled for years to make ends meet working as a supervisor in a retail store.
I'm now self-employed and more than able to financially support myself.

I understand myself better now that I've joined this community, because before then, I had no idea that there were so many other people like me.
It really put into perspective that I'm not "stupid" or "broken," just "different." And that a lot of us are very intelligent.

 

[The Pandector]

Sorry to see you go, if you're going to end up leaving. I hope what you've learned here has been valuable.
There have been a lot of times that I've felt like leaving here, but I found this community to be so helpful and supportive in a lot of ways that it's worth putting up with some of the not-so-great stuff that happens occasionally.

No! Not a wave goodbye, here. I was referring to a big difference between myself and so many others around here. That being, I have little use in learning how to keep a family, friends and career afloat. That makes a large difference in how you view things. I'm in a summing-up mode, kind of finishing up business before making my exit.

But, I ain't dead yet. This forum is important-too important-to me. Information and inspiration spring from this place. Nevertheless, it's a resource as I'm about the task of clearing my desk, another way of saying I'm waving goodbye.

True, I posted having just gone through two weeks of medical testing. I wish I could express just how much I hate medical procedures and the surrounding mind-numbing bureaucracy. So, the symptoms were serious enough to warrant submitting to that. But, the whole episode only sharpened the point.

You have me thinking of my recent history. As my wife approached death, I began shutting down in ways I couldn't have imagined. By the time she passed, I was pretty sure that I was one of those guys that simply doesn't make it past the first year. I was okay with that. The church - I was a teaching elder - had kicked me aside when I became less valuable. I soon found my sons harbored lifelong grudges against me, but had been constrained by my wife from expressing them. So, yeah, I was okay with fading away.

But, man knows not his time. After a year, I began to suspect I would live on; I had suffered an almost complete collapse of executive function. Food and cleanliness were big challenges. But I breathed on, and began to realize that I had time to finish up some business in a proper manner. I guess I'm still finishing up that business.

 

[The Pandector]

the conclusion that I am actually intelligent, and many have even told me so, despite the narrative I've been feeding myself for so long.

I hear you. That was me. But I quit believing I was stupid in junior high when I became a debate champion. Nevertheless, as with you, they continue on with their narrative. I am seeing now that I developed a seriously bitter gall because I knew they were wrong. Is it a persecution complex if you really are being persecuted?

 

[Luca]

I hear you. That was me. But I quit believing I was stupid in junior high when I became a debate champion. Nevertheless, as with you, they continue on with their narrative. I am seeing now that I developed a seriously bitter gall because I knew they were wrong. Is it a persecution complex if you really are being persecuted?

If you are really being persecuted, then I don't think it's a complex. But it can lead to overall distrust of people and trouble letting your guard down (both things that I struggle with, with complex PTSD.)

 

[Ed#]

I believe it was Leo Kanner who said that, if autistic people had not been diagnosed and treated by a certain age (around 20, I think) then they would ‘never know who they are.’

That sounds hyperbolic to me. It's the sort of statement I've heard specialists in other areas make sometimes -- an overly dramatic statement about the importance of their particular specialty area. "Unless X happens by date Y, something terrible and irreversible will happen." Oh no! Sometimes it's a way of trying to get people's attention and support.

It's hard to say out of context, but perhaps he is referring to the self-alienation involved with masking. If so, then I'd counter that there are dozens of routes to becoming more aware of masking and working on reversing that process. You don't need a diagnosis of autism to do that. Hell, I did it for decades before even suspecting I was on the spectrum.

As long as you're aware of your tendencies to "fake" yourself for others, and you've worked to become a more honest and authentic person, then good enough. That's how you "know who you are." You don't need an official dx of autism to do that.

I’m not approaching life, it’s in my rearview mirror. My careers and my family life are pretty much things of the past, in terms of playing an active role. So, my search for understanding is more about the way I choose to sign off.

Hey, you ain't dead yet. You could live another decade or more. It sounds like you've got a good religious/spiritual life. That gives you a much broader perspective that I'm sure helps you. But don't put this Earthly life in your "rear-view mirror" quite yet. It ain't over 'til it's over!