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A Lonely Wave Goodbye

The Pandector

Well-Known Member
V.I.P Member
Came across it once, can’t find it again. I’m looking for the context.

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 has raised a lot of questions for me. I self-diagnosed at 68, haven’t doubted it since. It’s kind of lonely on these boards for me sometimes; people are all engrossed in how to approach life with a healthy dose of knowledge and enthusiasm. 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.

I wish I had some hint of understanding of what Kanner was talking about, about knowing who I am, according to whatever standard was used to determine who a person really is. Which is really the point – to find out how he calibrated reality.

Not at all to argue, but a significant point. I know who I am in Christ. It is more than doctrine to me; I have striven to fulfill my role in Christ most of my life. That is solid. Kanner (if it was him) seemed to be using some worldly metric in defining our ‘real’ self.

Is anybody familiar with the quote? I’d like to hear comments.
 
I'll eventually be "signing off" as well. But thankfully knowing who and what I am.

To be able to look back in hindsight to explain for better and for worse what motivated me to be "me".

It isn't "pretty", but at least I understand the most critical common denominator in my life after all these years.
 
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 56 when I got a formal diagnosis (resulting from work), and honestly, before that, it would never have occurred to me to think I was on the spectrum. As a lot of us do, I assumed I was just not one of those who fitted in, and was too insular and introverted to make friends. I didn't know my 'special interests' such as contract law, acoustics and computer systems engineering, were anything other than the same sort of interests other people had, or went any deeper than they did.

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.

It has, in a real sense, been rather liberating, not least for all the times I had thought previously how I would do things if I could only go back and have another go, when now I know that I was being honest to my own self, even if not a comfortable fit with others.

I'm sort of glad I didn't know until a few years ago, but it has made the years since my diagnosis much more fulfilling having reached an understanding of my own self.
 
I sort of started to figure out that I was probably autistic when I was in my 20s, but I didn't learn anything about it until my late 40s. Got diagnosed at 55.

But I have always known who I am from a very early age. I have never had any doubts. Any attempts to make me be like everyone else were always met with fierce resistance, and still are.
 
I’d like to hear comments.
I doubt it was Kanner. All of his subjects would have been placed in special education at school even if improperly diagnosed.
It was Asperger's subjects who flew under the radar.
I did not receive my Asperger's ASD1 diagnosis until 45,
but I was identified as gifted at age 6,
full

so I already had a "license to weird..." :cool:
Autism just gave me the rest of the story. ;)
 
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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.
How true. Especially when I look back at how my survival instincts told me at an early age to mask my traits and behaviors without having a clue as to why.
 
We can still be autistic grandparents to autistic grandchildren...
(whether they be ours or somebody else's ;)).
 
I don't know who Kanner is, but there may be some truth to what he said. Years 0 - 20 or maybe even 0 - 25 are years spent learning, growing, and doing new things. But a person with ASD generally experiences a narrowed sense of experiences because of the exhaustion of trying to fit a world that does not always fit them. Whether it be sensitivity issues, auditory processing issues, or social deficits (which in my opinion is caused by the prior two items), these are all limitations in a person's ability to try new things and interact with new people. Limited exposure and feeling different causes intense emotional harm over years and years which further reduces a person's ability to try new things. A person with ASD has fewer choices - sometimes we want to do something that is interesting to us, but we are not capable of it. Or we may like a certain person and want to be friends, but do not have the emotional energy left for it. Often times we seem to find ourselves in relationships where there is some sort of mismatch. For example, I have had some close friends over the years who were very outgoing and I relied on them pretty heavily for a friendship circle. Some of them also made subtle jabs at me or made fun of me - something a true friend generally would not due unless it was not at the expense of you. I have gotten off track but it makes sense to me that if you are only able to be exposed to a limited amount of experiences while young it may be difficult to develop an idea of what you are interested in. Although I am not sure how much a diagnosis at a young age will change all of this. I think the main benefit is it may have a profound impact on limiting the amount of emotional harm because there will be an understanding of why you feel and act a certain way. Instead of thinking that there is something wrong with you and that your inability to fit in is your fault.

I have never been officially diagnosed, but I think it was around age 25 or 26 when I realized that I had ASD. It was a relief to finally have an explanation for my life. I am now a little more forgiving of myself, but not always. Life has still been a bit of a struggle since then (career and personally), but some progress has been made. I have made one additional really solid friendship which has turned into two with his now fiance. I have ventured into a few other new interests/hobbies, but mainly go back to my primary interest of running. Romantic relationships have an continue to be nearly impossible to find and I have not experienced a serious long term relationship. I have experienced very few short term intimate relationships. Much harder to find a long term relationship I get older. I think it is also more difficult to try new things as I get older. Overall I think there is some truth to what Kanner said, although I don't think it is impossible to try some new things.

The above thoughts are all my own based on my lived experience.
 
Came across it once, can’t find it again. I’m looking for the context.

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 has raised a lot of questions for me. I self-diagnosed at 68, haven’t doubted it since. It’s kind of lonely on these boards for me sometimes; people are all engrossed in how to approach life with a healthy dose of knowledge and enthusiasm. 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.

I wish I had some hint of understanding of what Kanner was talking about, about knowing who I am, according to whatever standard was used to determine who a person really is. Which is really the point – to find out how he calibrated reality.

Not at all to argue, but a significant point. I know who I am in Christ. It is more than doctrine to me; I have striven to fulfill my role in Christ most of my life. That is solid. Kanner (if it was him) seemed to be using some worldly metric in defining our ‘real’ self.

Is anybody familiar with the quote? I’d like to hear comments.
Well, I am not sure about the "treated" part, but certainly, there is something to be said for a diagnosis, whether professional or self-diagnosed (if, in this context, the self-diagnosis was correct).

I am quite certain that there are many adults out there having the same difficulties and experiences, never being diagnosed, never having some context to their life, and not having the information that may lead to further learning about autism and their self. So, in that respect, I would agree that they might "never know who they are." I was not diagnosed until 52, and that diagnosis opened up a whole new perspective and learning pathway. I am learning new things about myself almost daily. This forum has helped quite a bit, in fact. I will be responding to a post and I will start typing, then I will read it back and think, "Ok, I never really put those thoughts to written word before.", a little "light bulb" lights up, and I just learned something about myself.

As far as "calibrating reality", which opens up an entirely new discussion, I am thinking this is fraught with cognitive errors, biases, and personal beliefs. It's perception, nothing more.
 
And does diagnosis at 20 ensure you hold down a job, does it ease sensory, do we suddenly have good friendships?

It is clarity, but we need solutions
What jobs work best?
How did you hold down a job?
Can you navigate life problems, do we need more understanding....
 
@The Pandector When a person is told from "day one" that they're not acting correctly, presenting themselves correctly, etc and that person figures out that "masking" is an attempt to blend in with the NT world and is able to do it with at least marginal success, that person does not develop a sense of true self. They're not themselves if they're trying to pretend to be like others. If they don't develop their own identity then they can reach a certain age where they're cognizant of the fact that they don't know who they are. That's my interpretation based on my own life experience.

Personally I think the most important thing for autistics who have had that kind of life experience where they don't develop a sense of true self is to get to a point in life of serene self-acceptance. Making peace with yourself. Knowing that trying to "blend in" for the sake of others but to your own detriment is waste of a life.

I'm always comforted to hear about people who truly find peace in their lives in any manner of healthy ways. That includes hearing about people who truly find peace in their lives through their own private and personal spirituality, religion, etc. Conversely it comforts me also to hear from people who have truly found peace in their lives and a catalyst for self-acceptance by leaving religion if that was a limiting, damaging, traumatic thing in their life that was preventing them from truly accepting themselves and finding peace.

Good luck on your journey.
 
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.
 
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
 
Just one last question....
Nowadays we live in so called free world,
Not so long ago you could being born a slave, a women with no ideas, or still born into poverty surrounded by poverty,

Whoever said world was always a just and fair place wasn't being specific about diagnosis....but realistic about the world never really being free
 
There is nothing that says you can't be cheerful and focusing on the positive irregardless of your age. I do believe it really does hinge on your choice of how to go about life. And I say this as someone who lives with pain on a permanent basis and one who has had to wrestle with Leukemia, heart condition and any other number of age and wear and tear issues. For me the trick is to search out the contentment and even joy in even the littlest things as well as those things that I have enjoyed all my life. Don't give the bad or negative any more room in your mind then it already has.
 
I found therapy in helping others, I found others would turn to heal me too, this is the gift of giving. I'm older too, suppose old enough not to make any career changes but sufficient to know albeit more about life with autism. So while I am here searching for answers for health or my son I am trying to use grey hairs to help those who are younger.
It wasn't always that life/time doesn't wait for anyone but that money or opputunity wasn't always there, I remember more years battling for money than good years.

The solutions are what jobs work... How can we combat alexythemia. Many of us have PTSD we were the autism rat generation, many facing narcissm.
Cheer up
 
I don't know who this Kanner person is, but that sounds like nonsense to me. I wasn't diagnosed until my late 20s and didn't begin to figure out who I was until my early 30s. I suspect that searching for the self is a journey everyone is on until the day they die. I think it should be that way.
 
I don't know who this Kanner person is, but that sounds like nonsense to me. .....

We know a great deal more about autism as a result of Kanner's work than we would do otherwise, but even if that's a quote of his, it doesn't mean he was always right. In the context of autism studies of the time (principally 40-60 years ago) when a diagnosis could still put you into a mental hospital, there was a belief that it was largely an issue to do with age and sex - young men had it, but there were decreasing signs of it in more mature males, and very little sign of it in girls or women.

I would suspect that's the context the quote was made in - though I don't recall Kanner saying it.

Today we know a great deal more about autism and its disposition amongst the population as a whole, and
.... I suspect that searching for the self is a journey everyone is on until the day they die. I think it should be that way.
is exactly right!
 

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