What am I??

[Ken]

I am “officially” self-diagnosed as autistic and am totally confident in that, however, I am not so sure at what level. At the time, I thought I must be ASD1 – high functioning. I don’t feel getting a professional diagnosis is worth the cost. I would like to know, but it isn’t worth the time or money.

It seems to be generally assumed that if you are capable of surviving in the world without help, then you are considered “high functioning”. Well, I have survived and I even consider myself “successful”, but that is only because there was never any help available, not because I never needed it. I just never happened to die is why I’m still here. My success has only been a matter of happening to be in the right place at the right time. Was never due to any mindful planning.

I have never “fit” in society. Everything has been extremely difficult to impossible. I never was able to navigate education (crippling social anxiety). Could not even make it through a single college prep class. Cannot work a job that involves people. Much of life has been an exercise in frustration and confusion. I can learn almost anything, but I can’t be taught. Except, I have never been able to learn how to be a “normal” human being. My father’s most famous exclamations at me were, “when are you ever going to wake up and act like a normal human being.” All my life, I never had any clue how to be a normal human being. It was hopeless. And that has been my life for 71 years. I feel I survived only because I simply haven’t died yet.

I have read some of @Outdated posts indicating a diagnosis of ASD2. Google says that ASD2 requires help. From many of @Outdated posts, he seems far more life capable than me, so perhaps I am ASD2 or most likely less?

So, I am curious as to what I might actually be. Any thoughts?

 

[autism-and-autotune]

I resonate with a lot of what you're saying. I too am fairly low-support needs and was able to mask (or forced to mask?) very well for nearly thirty years of my life..til my diagnosis, that is. The more comfortable I am with myself and the more I learn about autism...the more debilitating some aspects of my autism have become. I think I'm more of a...medium support needs. I can drive a car, but not for too long. I can work and be around people but not for too long. I can't engage with authority or learn new things if I have no passion for them. Filling out paperwork or online forms? Forget it. Navigating life and tasks when I have no spoons? Forget it!

Sorry for the rant.

 

[The Pandector]

@Ken and @autism-and-autotune have both written my life story. Too capable to be seen as disabled, too disabled to be seen as capable. Leaned heavily on my wife for jobs that required more spoons than I possess, was rudely surprised when she passed to find how I had become so dependent on her in those ways.

Still trying to figure out the categories. My job history says I must be 'high functioning', whatever that means. But, when I try to find authoritative references, it seems that 'high functioning' merely means I can dress and feed myself without aid. However, my daily life is stressful even though I am retired. Sometimes just paying the bills or dealing with a drug-addled gardener are major hurdles. I feel that, age approaching, I shouldn't really be alone, but alone is what I am. Not sure whether a professional would label me ASD1 or 2, just know that, at the same age as @Ken, I'm not about to embark on the adventure of finding out.

 

[Outdated]

I have read some of @Outdated posts indicating a diagnosis of ASD2. Google says that ASD2 requires help. From many of @Outdated posts, he seems far more life capable than me, so perhaps I am ASD2 or most likely less?

It's important to remember that for the most part these "rankings" for the lack of a better word have been developed by people who are not autistic and struggle to understand how things work with us. As you just pointed out, we struggle to figure this out ourselves, NTs don't have a hope of getting it right.

As a young man I was far more than just high functioning, I was more than exceptionally extra advantaged. I had some funny quirks but I discovered that if I just glossed over them then so did most other people.

Then when I was in my 40s I burnt out big time and ran away in to the rainforests to get away from society - by diagnostic definition no longer high functioning.

I get away with a lot more than most people because of all the ways and mannerisms that I learnt as a young man, I'm well practised and more skilled at socialising than most but that doesn't mean I cope with it perfectly well. In fact I find myself tiring and becoming burnt out much more quickly and easily these days than I did when I was young.

I think a lot of that will be more to do with grumpy old man syndrome than autism itself but that doesn't show up in the diagnostic process. For all intents and purposes I am no longer considered to be high functioning and I am instead listed as "in need of substantial support".

 

[Rodafina]

My father’s most famous exclamations at me were, “when are you ever going to wake up and act like a normal human being.” All my life, I never had any clue how to be a normal human being.

@Ken
Do you think it's too late or too simplistic to adjust your idea of normal? I understand the sentiment, but the most important thing really is what is normal for you. This notion of normal is a vicious and insidious thing for autistic folks.

Learning what your strengths are and the environments in which you can put them to use determines level of functionality. In some environments, we will thrive and in others, we will struggle, burnout and fail.

So maybe an accurate diagnosis for you could be Flexible ASD 1 or 2 depending on where you are and what you are trying to do. Maybe a clear and stagnant determination of where on the spectrum you fall is less important than furthering your understanding of yourself and accepting the dynamic nature of functionality and need for supports.

 

[Gerald Wilgus]

@Ken and @autism-and-autotune have both written my life story. Too capable to be seen as disabled, too disabled to be seen as capable. Leaned heavily on my wife for jobs that required more spoons than I possess, was rudely surprised when she passed to find how I had become so dependent on her in those ways.

Still trying to figure out the categories. My job history says I must be 'high functioning', whatever that means. But, when I try to find authoritative references, it seems that 'high functioning' merely means I can dress and feed myself without aid. However, my daily life is stressful even though I am retired. Sometimes just paying the bills or dealing with a drug-addled gardener are major hurdles. I feel that, age approaching, I shouldn't really be alone, but alone is what I am. Not sure whether a professional would label me ASD1 or 2, just know that, at the same age as @Ken, I'm not about to embark on the adventure of finding out.

I consider myself high functioning - able to navigate higher education, contribute to research publications in Molecular Genetics and Experimental Pathology, patents in nuclear isotope processing, able to contribute to pharmaceutical process quality, learn skills in risky outdoor activities. and along the way, overcome social deficits to attract an accepting spouse. There are others, here, like @Neonatal RRT, even more successful in a demanding discipline. Though I wonder if we are outliers?

 

[Outdated]

In some environments, we will thrive and in others, we will struggle, burnout and fail.
So maybe an accurate diagnosis for you could be Flexible ASD 1 or 2 depending on where you are and what you are trying to do.

This is very much how it worked for me, certainly my performance in the workplace was very dependent on how socially comfortable I felt in a work place. As long as I was happy I was always capable of so much more than anyone else but if I wasn't comfortable the wheels fell off it pretty quick.

I changed jobs a lot, but I also worked a trade where that wasn't uncommon. If I went through too many rubbish jobs in quick succession I'd start to get depressed and miserable. I didn't know anything about autism back then but it usually triggered me in to going and living in another state or region and seeing how I get on there.

I had a lot of great times along the way and met a lot of great people, but the same pattern kept repeating and I couldn't work out why I couldn't ever settle anywhere.

 

[VictorR]

Learning what your strengths are and the environments in which you can put them to use determines level of functionality. In some environments, we will thrive and in others, we will struggle, burnout and fail.

100%.

The concept of ASD levels comes from the Medical Model of Disability, which considers one's differences to render one disabled.

In the Social Model of Disability it is not one's differences that make them disabled, but rather, it is the barriers they encounter that make them disabled - so one can thrive, in the right environment.

 

[The Pandector]

Though I wonder if we are outliers?

When I turned to this forum, I had high hopes of finding people like myself. Of course I did, in many ways. The high school counselors harped that I could get high grades without trying, if I'd just put forth any effort. But I always suspected that there was more than IQ setting me apart, and expected to finally find the answer in this community. What I found is that there is more than IQ setting me apart from John Q, and that there don't seem to be many with my peculiar ways around here. At first, I encouraged people to talk about their windows of mastery, but I think that those are just spoken of as special interests.

Ever theorizing, I've been wondering if what made for my own success is a confluence of factors, led by the uncommon fortune of stumbling into just the right job. I see systems, and troubleshoot by, uh, inspiration. While I never operated on @Neonatal RRT 's level, I was that guy, behind the scenes of a military mission control theater. So, that just clicked. Add to that the center director over that operation saw reason to the madness that I insisted on, and I was given operational control of those systems. Was never sure what he saw, but he gave me leeway and support that I saw nowhere else in his other areas, and I made changes that dramatically improved reliability and some functionality. Nowadays, I suspect the director knew he needed an irritable idea guy, and put up with the rest; just luck I was his guy.

What I'm suggesting is that, maybe part of the reason for our performance outliers is that their special interests and abilities came together in a particularly salable way. Not at all to diminish the achievements of our scholastic achievers, who I suspect have a far wider range of options than one like me, with learning issues that make classroom settings underproductive.

Or, maybe God laid it all in front of me. Or both.

 

[Fino]

Strong.

 

[Outdated]

When I turned to this forum, I had high hopes of finding people like myself. Of course I did, in many ways.

This is truth for all of us, we're all very different to each other. None of us are the same.

By talking to many people and finding bits and pieces of ourselves in others is the best way to learn more about ourselves. How some professional decides to classify us is irrelevant to this process. In a way it reminds me of a sad old joke:

When God made dogs he was pretty busy and he got all their bum holes mixed up. That's why they all run around sniffing each other, they're all looking for their own bum.

 

[Progster]

Your functioning level is determined by whoever is assessing you according to what your needs are, and how much support you need, at the time of diagnosis. So if you are going through a major burnout, struggling to support yourself, not able to work and/or have relationship difficulties, and seek support from the state, then it's likely they will diagnose you with ASD 2. If you are coping, independent but have some difficulties that you don't need a lot of help for, then you are likely to be diagnosed with ASD1.

People can fluctuate. For example, when I got my diagnosis, I had lost my job, couldn't cope with a new job I had got, was in a failing relationship, and going through a major breakdown. I couldn't support myself. I had to give up the flat and move back with my family in the UK for a while. I was diagnosed with moderate Asperger's (2012 - DSM IV). I believe that under the new DSM, it would probably be ASD2 so I could access the support I needed. If I were to be assessed today, I would be ASD1. I need help, but can live independently and support myself.

 

[autism-and-autotune]

@Ken and @autism-and-autotune have both written my life story. Too capable to be seen as disabled, too disabled to be seen as capable. Leaned heavily on my wife for jobs that required more spoons than I possess, was rudely surprised when she passed to find how I had become so dependent on her in those ways.

Still trying to figure out the categories. My job history says I must be 'high functioning', whatever that means. But, when I try to find authoritative references, it seems that 'high functioning' merely means I can dress and feed myself without aid. However, my daily life is stressful even though I am retired. Sometimes just paying the bills or dealing with a drug-addled gardener are major hurdles. I feel that, age approaching, I shouldn't really be alone, but alone is what I am. Not sure whether a professional would label me ASD1 or 2, just know that, at the same age as @Ken, I'm not about to embark on the adventure of finding out.

Hey, I'm in your shoes too, pal. My doctor when assessing me for autism called it 'mild-presenting' which was only true because I was still masking. And I hadn't grown into it yet. And when folks say mild, they mean that 'it has no affect on folks observing the individual with autism.' Valid, but...you don't know what it's like to be in my brain!!

I completely resonate with everything you're writing in the second paragraph. Stress just kills me and takes my spoons.

 

[Ken]

Thanks for all the replies, but It's not really all that important. As I said,

I don’t feel getting a professional diagnosis is worth the cost. I would like to know, but it isn’t worth the time or money.

I'm fully aware that it all depends on the circumstance and environment. I have extreme social anxiety. I'm not even sure that is the proper term. When I said that I cannot learn how to act like a normal human being, I don't mean it is difficult, I mean I can't even comprehend the concept. I am completely clueless. Thus, I am totally incapable when it comes to anything social. Attempting to mask only makes things worse.

However, I excel professionally as an electronics design engineer. I first got a job as a technician assembling prototypes as per the engineers designs. A very low skill job. But electronics design has been my obsessive passion since toddler age. I spend all my life studying the physics and everything regarding electronics design. As I would assemble the prototypes, I would point out design flaws to the engineers. Initially they were offended (I almost got fired), but then they realized I was right. As this kept going back and forth, the boss required all the engineers to pass their designs through me before proceeding to prototype. By and by I was promoted to senior design engineer. Remember, I can't handle college, so, I'm the only engineer without a degree, but was promoted to the top senior position. I guess that qualifies as high functioning.

What I wonder, is factoring both of them together and considering social contains the greatest element of life, how I would be "evaluated", because there is such an extreme difference between the two.

 

[Ken]

Stress just kills me and takes my spoons.

Please forgive my ignorance, but I see a lot about spoons. What does that mean????

 

[VictorR]

Please forgive my ignorance, but I see a lot about spoons. What does that mean????

https://en.m.wikipedia.org/wiki/Spoon_theory

 

[Ken]

https://en.m.wikipedia.org/wiki/Spoon_theory

Thanks!

 

[Outdated]

I agree with you @Ken that a diagnosis is of no help, unless it is going to serve a specific purpose such as a welfare claim it is a complete waste of time and money.

For me ego was the key to getting past social anxiety, which for the most part came from my expertise in my trade. Same as you, I had no formal qualifications and just sort of elbowed my way in to the trade because it had become a special interest. Technically I wasn't a tradesman and so it was illegal to have apprentices taught by me, yet it was me they always sent the apprentices to because I was the best.

Because it was based on genuine fact of life my ego wasn't easily deflated, what most people thought of me in social circles never really mattered because they weren't the ones paying me money, my life did not depend on their opinions.

The ripple effect - because I had genuine respect for myself others felt more inclined to have respect for me too.

Since about age 4 people always told me I'm weird, they still do today. My response to that as a self confident adult is to laugh and tell them they haven't seen anything yet. A boss once told me I had more front than Myers. (department store) My face lit up like it was Christmas and I said Yes.

 

[Judge]

So, I am curious as to what I might actually be. Any thoughts?

You are "one of us".

In a world of ever-changing ambiguous medical terminology and semantics, maybe that's enough.

 

[autism-and-autotune]

Please forgive my ignorance, but I see a lot about spoons. What does that mean????

It's okay!! 'spoons' is another way to reference executive function. At least, that's my understanding of the vernacular. When I have no spoons, I cannot mask anymore or control my temper or tolerance to being overstimulated. There are times when I'll be physically exhausted but still have spoons, or be mentally tired and still have spoons, but...

Can anyone help to make sure I've got the correct definition?