Struggle with Diagnosis?

[SeanF]

Quite the opposite. It was like a weight lifted off my shoulders. I now had an explanation for my life's experience, or at the very least put it into proper context and perspective. I wasn't a failing neurotypical. The reality was that I had some understanding or perhaps some commonality with some of those autistic children we sometimes see in the media, but then, I was also a "well-functioning" adult, and in my ignorance, I couldn't satisfy that argument. I had no idea of ASD-1, 2, or 3 or any of the associated and/or common co-morbidities. It just wasn't on my radar. I had some issues around 2019-2020 at work and was talking with a co-worker with an adult son with ASD-1/Asperger's. We were talking about him, and I recognized those behaviors in myself, and then she recognized those behaviors in me, and so I found the AQ test online, took the test, and the results suggested very strong autistic responses. Started doing some reading, took some different autism tests, all of it was lining up. Made an appointment with a psychologist specializing in adult autism, and the rest is history.

@SeanF, could you elaborate a bit on why your autism diagnosis is making you struggle? Obviously, I had the opposite experience and would like to understand yours better.

I agree that in some ways a weight was lifted off my shoulders. It is nice to know that I am not crazy. I think the warring sides of my ADHD and ASD often made me feel this way.

I am not entirely sure how to explain how I feel as I am also alexithymic. It takes me an ungodly amount of time to process this sort of stuff because I am never sure how I am feeling. I generally base it off my somatic responses. I think one of the things I dislike the most is my loss of agency or at least the mistaken belief that I had agency combined with my initial confusion over my self-identity. I think there are many things that I was trying to be for other people I love, that I am now realizing that I am not. At 48, this has resulted in a very unbalancing paradigm shift. In the long-term it will probably be a beneficial one. In the short-term, however, it makes feel the need to vomit.

Please do not misunderstand me. I am not saying that discovering I am Autistic makes me feel that way. It is the disequilibrium of having to recreate a sense of self that I have struggled my whole life to erect. I have lived for 48 years in existential crisis, ignoring pieces of who I am in a desperate attempt to belong to a world that I now understand was not even built for me.

I watched a cute video yesterday about a cat that thought it was a rabbit because it lived with a bunch of them in a home. The cat would awkwardly hop, pretending to be a cat. I could not help but identify with this. Only in real life there is also a place for cats. If that particular cat ever realized that it wasn't actually a bunny, it would have a community where it belonged. I do not feel we Autistic people share that luxury.

I feel like this is the main reason for my sadness, despair, anxiety, whatever emotion it is that makes my stomach turn over on itself as if I have just swallowed expired milk. I guess I was just wondering if I really was alone in this despair and was kind of hoping to discover that I was not.

 

[SeanF]

Over the years I've read a lot of people share they had problems accepting the diagnosis. What aspect about it is difficult for you?

Another member asked me the same question. It is a good one, so thank you. I tried my best to reply the best I could in my answer above. I feel like this answer is evolving; though, as I am still trying to figure this out. So I don't clog up this thread, check out my response to Neonatal RRT. I feel like that is at least a start.

 

[SeanF]

That is what the "expert in autism" said to me that they do not use the term Aspergers anymore in France, but at the same time, stated clearly that I am not autistic, but do have Aspergers.

That is nuts. Even a cursory look at the current literature on the topic of Autism would have told them that they were wrong.

 

[Tom]

Only in real life there is also a place for cats. If that particular cat ever realized that it wasn't actually a bunny, it would have a community where it belonged. I do not feel we Autistic people share that luxury.

There actually is some community among autistics and i believe it is growing. Places like this where one can be themselves without fear of being labeled as 'different', 'weird' or worse. But because of the late awareness of ASD-1 many are just now realizing 1) they are on the spectrum and 2) there are a whole lot of other people there too. The latest stat from the CDC is 1 out of every 36. That is what is currently being measured in the newest cohort of 5-8 years old children.

Yet even before I realized I was on the spectrum (late 30s) I instinctively recognized there were odd people like me and tended to gravitate towards them.

But I think autistic communities will not function like typical NT ones. They will not be social clubs although that seems to be what is often tried (probably an NT idea). We are very individualistic and tend heavily towards solitary existance (though we can co-habitate reasonably well with understanding partners). On the other jhand if we can connect with people with similar interests the communication back and forth can be very rewarding and prolific at times. And it's even in the realm of possibility we just might go do something together interest related.

What do you mean by 'Agency'? I only know the meaning as in organization, like the Space Agency or something similar.

 

[Ronald Zeeman]

I like doing it my way read my avatar, this is how my being on the spectrum presents itself. I trust what I can see in my mind's eye.

 

[Neonatal RRT]

I agree that in some ways a weight was lifted off my shoulders. It is nice to know that I am not crazy.

I am not entirely sure how to explain how I feel as I am also alexithymic. It takes me an ungodly amount of time to process this sort of stuff because I am never sure how I am feeling. I generally base it off my somatic responses. I think one of the things I dislike the most is my loss of agency or at least the mistaken belief that I had agency combined with my initial confusion over my self-identity. I think there are many things that I was trying to be for other people I love, that I am now realizing that I am not. At 48, this has resulted in a very unbalancing paradigm shift. In the long-term it will probably be a beneficial one. In the short-term, however, it makes feel the need to vomit.

Please do not misunderstand me. I am not saying that discovering I am Autistic makes me feel that way. It is the disequilibrium of having to recreate a sense of self that I have struggled my whole life to erect. I have lived for 48 years in existential crisis, ignoring pieces of who I am in a desperate attempt to belong to a world that I now understand was not even built for me.

Well said.

I too, am alexithymic. The way you put it, "somatic responses". Perfect.

"I think there are many things that I was trying to be for other people I love, that I am now realizing that I am not." That hits home. I lost my parents and siblings because of this.

"It is the disequilibrium of having to recreate a sense of self that I have struggled my whole life to erect....ignoring pieces of who I am in a desperate attempt to belong to a world that I now understand was not even built for me." This, I think, will go away in time. I was 52 when I was diagnosed. Literally half my life was living in ignorance of who I am. The only way I could cope in terms of learning the "new me" was to take a deep dive into the medical literature of "all things autism". Some of the literature didn't really apply, but some of it described me perfectly. In a way, I was figuring out "what made me tick" and that whatever psychological and psychiatric nuances I had were secondary to the genetics, anatomy, and physiology. Clearly, there are things we all can change about ourselves if given the correct information and the proper motivation. Yet, there are other things that despite the wanting and the intellectual work put into it, the autism wins out. So, the past 4 years have been this journey of teasing out those two things, and then embracing what I can do to make the best version of myself, as well as, accepting what I cannot do without feelings of envy, depression, and self-pity.

 

[SeanF]

What do you mean by 'Agency'? I only know the meaning as in organization, like the Space Agency or something similar.

I mean the sort of agency that describes my ability to produce a particular effect. After months of deep-diving into the research, most of my choices in life can be boiled down to the fact I am Autistic. I have always tried to maintain a "growth mindset." It is just frustrating to learn that the extent of that growth is capped by the way my brain works. I guess I have always hated being told what I can and cannot do. Now it feels that I am being told this by my own brain and can't help but feel a certain sense of betrayal.

After I wrote this response, I just figured out what the character Jim Carrey played in The Truman Show must have felt like when he discovered he was living a simulation. His reality did not change. Yet somehow, simultaneously, all of his reality changed, and it could never be returned to the way it was. Now all his actions and what he thought were his own motivations behind those actions, seemed hollow because they were no longer entirely his by choice. This created a complete existential breakdown. For me, while I am unaware of any external producer coercing my every decision for public approval ratings, I found something infinitely worse. That producer lived in my own head, was my own head, and, as such, was inescapable. I can't ride a sailboat to the other end of the simulation. I think this loss of any ability to take action, or at least mental action, is the loss of agency I am referring to.

 

[Au Naturel]

When you first discovered you were Autistic, did you struggle with depression about this discovery?

While I know 100% that I am, and have no problem accepting this as a fact. I am, for some reason, having a difficult time accepting this fact. In other words, I know it is true, but I am still feeling some grief about it. Has anyone else experienced this?

LOL! I struggled with depression for decades before the discovery.

 

[Au Naturel]

The way it makes me feel subhuman.
The double standards it brings.
The stereotypes attached to it.
The fact that it can be a lonely and isolating condition.
Being treated differently by my peers (if they're told I have it).
The way I got teased about having a label as a child by my own siblings and cousins.
"Why me?"
Pride.
Hindered my social life growing up, as the other kids seemed to become scared of being seen with me simply because I had a label (the other girls in my class were TOLD about it without my consent, because that's the crappy thing about getting diagnosed in childhood).
Feeling like I'm "retarded" - but NOT saying that is what autism is because it ISN'T so PLEASE don't go thinking I'm calling everyone with autism the R-word because I'm NOT. But it's just how I've always felt I've come across to NTs. It's very difficult to explain this without autistic people hating me, but hopefully the people here are decent enough to understand what I mean.
Always felt embarrassed about it but this does NOT mean I think the same about the whole autistic community, so please don't take it personally when I say I don't want to be associated with autism.

It is a lonely and isolating condition whether you have a label for it or not, whether others know the label or not. I certainly wouldn't tell anyone about it; that eliminates the stereotypes and double standards. Sometimes, adults don't allow their children that bit of privacy. That's wrong.

You can change how you feel about something. You can't change what goes on in other people's brains. Focus on what you can work on, not what you can't.

 

[autism-and-autotune]

When you first discovered you were Autistic, did you struggle with depression about this discovery?

While I know 100% that I am, and have no problem accepting this as a fact. I am, for some reason, having a difficult time accepting this fact. In other words, I know it is true, but I am still feeling some grief about it. Has anyone else experienced this?

I can relate to you a little bit! When it got confirmed, at first I was sad because I wished it'd been caught earlier; maybe I'd not've been so foolish or volatile at some points in my life. I was sad because I wanted to know how my life would've been different if I'd known, and if my parents had cared to care.

But that only lasted a day or so, and I was able to accept myself, grow into my autism more, and learn about myself and boundaries and suchlike. Certain things are still a struggle, but less-so because I know more about myself.

 

[Misty Avich]

It is a lonely and isolating condition whether you have a label for it or not, whether others know the label or not.

Having the label confirms it though, making me feel more miserable. I don't like the word Asperger's because it was named after a Nazi, and I don't like the word autism because of the way it means "self", and I don't feel like I'm selfish, unsocial or uncaring of others.
Also the less others know, the more NT I feel.

I certainly wouldn't tell anyone about it; that eliminates the stereotypes and double standards. Sometimes, adults don't allow their children that bit of privacy. That's wrong.

Well I guess my mum just thought telling everyone was the right thing to do at the time.
I remember when I was 14 and she dated this guy and brought him home while I was at school. He'd gone when I came home from school but I saw the book about Asperger's laying on the coffee table, which indicated most of the date was talking about me and Asperger's. I just hated the way it was treated like my identity and had to be disclosed to everyone upon first meeting them. I mean, my sister has learning difficulties (NVLD maybe, though she's never been non-verbal), but I know my mum never went around telling everyone about that. It's like she'd say "I have 2 daughters, one of them has this thing called Asperger's...[detailed conversation about autism]". I've never liked being the figure of discussion just because I was somewhat different with a fancy label. If Asperger's was just called SCSD (Social Communication Sensory Disorder), or just "social difficulties" then I bet people would bring it up less.

You can change how you feel about something. You can't change what goes on in other people's brains. Focus on what you can work on, not what you can't.

I will never change how I feel about this. I've tried. When I was first diagnosed at 8 years old I began swearing angrily whenever someone said the word. I don't do that now of course, in fact I'm more able to talk about it to very close relatives, but now that I'm an adult I have that freedom to choose who I tell and who I don't. I haven't told anyone yet, ever.

 

[Neonatal RRT]

Having the label confirms it though, making me feel more miserable. I don't like the word Asperger's because it was named after a Nazi, and I don't like the word autism because of the way it means "self", and I don't feel like I'm selfish, unsocial or uncaring of others.

Dr. Hans Asperger was not a member of the Nazi party, nor was he a sympathizer. He did pay "lip service" to them under threat of his own death and the death of his patients though. The university in which he worked as a pediatrician was taken over by the Nazi party, his colleagues fell in line with the party, and Nazi fanatics were running a eugenic "house of horrors" at the university. Dr Asperger, by all accounts, was just trying to survive in order to prevent some of his patients from the death camps. https://www.npr.org/sections/health...erger-a-nazi-the-question-still-haunts-autism

The Greek root word for "autism" does mean "auto" or "self", but the context is more the social experience, such as difficulties making meaningful social relationships, maintaining friendships, and being a spouse. The loneliness and isolation, being present but out on the periphery, being inside a glass box, are examples of being by one's "self", or "auto", without others.

 

[Misty Avich]

Dr. Hans Asperger was not a member of the Nazi party, nor was he a sympathizer. He did pay "lip service" to them under threat of his own death and the death of his patients though. The university in which he worked as a pediatrician was taken over by the Nazi party, his colleagues fell in line with the party, and Nazi fanatics were running a eugenic "house of horrors" at the university. Dr Asperger, by all accounts, was just trying to survive in order to prevent some of his patients from the death camps. https://www.npr.org/sections/health...erger-a-nazi-the-question-still-haunts-autism

I see now. Thanks for explaining.

The Greek root word for "autism" does mean "auto" or "self", but the context is more the social experience, such as difficulties making meaningful social relationships, maintaining friendships, and being a spouse. The loneliness and isolation, being present but out on the periphery, being inside a glass box, are examples of being by one's "self", or "auto", without others.

It's a depressing and isolating description of the word though.
I seem to do well in a relationship with an NT. We're married and get along. We've become like soulmates and I feel just as comfortable around him as I do my close family. I feel there was never any effort needed even in the beginning, I just seemed to sail into the relationship subconsciously doing all the right things. I do feel pleased with myself about that. It might be due to being brought up in a loving supportive family maybe.

 

[Neonatal RRT]

It's a depressing and isolating description of the word though.
I seem to do well in a relationship with an NT. We're married and get along. We've become like soulmates and I feel just as comfortable around him as I do my close family. I feel there was never any effort needed even in the beginning, I just seemed to sail into the relationship subconsciously doing all the right things. I do feel pleased with myself about that. It might be due to being brought up in a loving supportive family maybe.

Agree, it is depressing and isolating description, but very apt.

I too, am married. The same girl for some 37 years. Clearly, there is love there, but I highly suspect that it's shown in my own way. However, with other people, even my own children, it's a general lack of bonding. I certainly don't sense like, dislike, love, or not love for my children. I would, however, take a bullet for them and sacrifice my life for them, not out of any sense of feeling, but out of my duty as a father. Otherwise, I am like the family cat that only bonds with that one person, my wife. Clearly, I understand my role as a father, family member, or even co-worker and educator. I get along with just about anyone. I am not an emotionally sensitive person that gets offended, that's just not a thing with me, so even with the most offensive of people, I can interact in a civil manner. I have the responsibilities and accountabilities clearly defined and I follow through, even to a fault. However, it's a general lack of feeling, and more a sense of duty and doing what is right for others that I tend to operate on. Perhaps, I just am consciously unaware, as this may be part of the alexithymia experience.

Regardless, I say I have many acquaintances, but no true friends other than my wife.

 

[Misty Avich]

My family are NTs but I've always naturally been able to bond with them. Me and my NT mother could almost read each other's minds. Same with my cousins, I formed strong bonds with my cousins. They were like ready-made friends and always automatically accepted me as who I was, not a diagnosis.
I did form bonds with kids in my class at school but it kind of fell apart when I got older. I wasn't unable to form bonds though, just they didn't let me form bonds with them. They thought that just because I had a label it meant I was contaminated or something.
The same happened with my brother's friend's sister. She's an NT, and was just forming normal friendships at school - until she got diagnosed with type 1 diabetes when she was 10. It somehow got blabbed to the whole class, and from then on the poor girl suddenly received bullying and social rejection.
It seems that a lot of adults think that if kids know a classmate has a diagnosis of an invisible disability or condition, they will understand and accept that child more. Um, wrong lol. Children and diagnoses do not mix. If your child has an invisible condition that isn't very obvious to the other children, keep it confidential.
I know I would have slipped through the cracks if nobody in my class had known about my diagnosis. The diagnosis caused more problems than the disorder itself.

 

[Dagan]

The struggle was the self-reflection part. I questioned and second-guessed practically my entire past. It was almost relearning who I was, and I have stated previous times that I went through the 5 stages of grief (at random - and back and forth - over nearly a year), and I guess, to better detail this time around mentioning this...it's because it really did feel like who I was suddenly passed away...because I was so suddenly someone else, then. I'm not one who cries at funerals or much at all, but this was an experience that broke me a few times. I like to think that processing it gave me a new strength, though, so I do take some pride in a kind of "phoenix rising" mindset in ways.

Per another mention here: We can tend to be our own worst bully at times. The realization hit after diagnosis can rather be like a bully coming at us pretty much. Learned also, then, is that we figure out how to fight back in this area. We all learn differently, and we all have our time it takes, of course. I like to think that all of us here are proof that we are winning these battles.

 

[SeanF]

I like doing it my way read my avatar, this is how my being on the spectrum presents itself. I trust what I can see in my mind's eye.

The struggle was the self-reflection part. I questioned and second-guessed practically my entire past. It was almost relearning who I was, and I have stated previous times that I went through the 5 stages of grief (at random - and back and forth - over nearly a year), and I guess, to better detail this time around mentioning this...it's because it really did feel like who I was suddenly passed away...because I was so suddenly someone else, then. I'm not one who cries at funerals or much at all, but this was an experience that broke me a few times. I like to think that processing it gave me a new strength, though, so I do take some pride in a kind of "phoenix rising" mindset in ways.

Per another mention here: We can tend to be our own worst bully at times. The realization hit after diagnosis can rather be like a bully coming at us pretty much. Learned also, then, is that we figure out how to fight back in this area. We all learn differently, and we all have our time it takes, of course. I like to think that all of us here are proof that we are winning these battles.

Thank you for your heartfelt reply. It really resonates with me. I am glad you have managed to process all this and come out stronger for having done so. It gives me hope that someday I will too. Right now, though, I feel much more of the breaking aspect. But I am finding these days are becoming fewer as I continue to head into what I hope is the right direction.

 

[Neri]

When you first discovered you were Autistic, did you struggle with depression about this discovery?

While I know 100% that I am, and have no problem accepting this as a fact. I am, for some reason, having a difficult time accepting this fact. In other words, I know it is true, but I am still feeling some grief about it. Has anyone else experienced this?

So, I just received my official diagnosis roughly 3 weeks ago and I didn't expect to go through grief about it as I've known I was autistic for about 6 years, but ...
I had a crying fit about it a few days in. I still don't understand why I did that because I thought I'd already come to terms with it, but apparently, no.

Bear in mind that I'm 50 and female. I also had a very horrible time dealing with the reaction of one of my adult children. I started a thread about that.

It ended ok, with her ringing me to let me know that she would rather accept me than compromise our relationship, but, it devastated me when it happened and I'm not fully recovered. I don't want her to know that though.

I also am dealing with not knowing for so long and how super duper awful that was, a lot, and how I wish I'd understood my parents were also autistic, because not understanding their failure to respond to my adolescent needs for support threw me into a world of hurt, for, basically, the rest of my life and if I had of understood autism and how they are it, I wouldn't have felt so hurt, so rejected and so thrown into the "too hard basket" that I was. My brother said that, a few years ago, how he watched them do that to me and yeah, that's what happened and I'm still not completely over that trauma.

Except that the silver lining of that is that 7 people now exist who wouldn't otherwise exist ("monotropic" rinse repeat, and never stray off course, "autistic inertia" of repeated pregnancy and childbirth and not figuring out how to try anything else, "heightened morality" to see it through, and to raise all the children I brought into the world, responsibly and as well as possible with no money, no loving partner {except same partner}, no home for much of it and no life, social or communication skills, you can ask, if interested).

So I'm really feeling A LOT of grief about that.

I'm also grieving about how unsafe it is to share my diagnosis, after the horrible fiasco with my daughter.

 

[MNAus]

I mean the sort of agency that describes my ability to produce a particular effect. After months of deep-diving into the research, most of my choices in life can be boiled down to the fact I am Autistic. I have always tried to maintain a "growth mindset." It is just frustrating to learn that the extent of that growth is capped by the way my brain works. I guess I have always hated being told what I can and cannot do. Now it feels that I am being told this by my own brain and can't help but feel a certain sense of betrayal.

After I wrote this response, I just figured out what the character Jim Carrey played in The Truman Show must have felt like when he discovered he was living a simulation. His reality did not change. Yet somehow, simultaneously, all of his reality changed, and it could never be returned to the way it was. Now all his actions and what he thought were his own motivations behind those actions, seemed hollow because they were no longer entirely his by choice. This created a complete existential breakdown. For me, while I am unaware of any external producer coercing my every decision for public approval ratings, I found something infinitely worse. That producer lived in my own head, was my own head, and, as such, was inescapable. I can't ride a sailboat to the other end of the simulation. I think this loss of any ability to take action, or at least mental action, is the loss of agency I am referring to.

I think I felt defeated. Like I'd spent a lifetime fighting a battle only to find out I was in the wrong field. Thing is, that took a bit of time to work out, because my first instinct was "so, now I find out that I cannot win and I never could". But I was actually fighting the wrong battles, because I didn't know the battles I could win. The feelings that understanding triggers are a mixed bunch.

First of all it's regret and perhaps bitterness for missed opportunity, missed chances, for tears of frustration that never needed to be shed. But then, I thought, would i want to be someone else? Perhaps, but I couldn't think of wanting an NT brain; frankly that seems repulsive: worrying about celebs, who said what about who, etc. And so it's a feeling of relief. That part of my life is done. For whatever reason, that was how it had to be for me to end up here, and I am here. I can't second guess why it all happened that way, but that struggle of fighting the wrong battles is DONE!!! Woohoo!!!! I mean sure, sometimes I get sucked back in to trying to do politics (and failing) trying to be cool (and failing) trying to schmooze (and failing), but I can have the epiphany again and again: "don't need to do this".

And finally, it's the recognition that you have your own armoury of weapons, that others don't have. That's not some "2e" thing, it's that removing some perspectives on the world frees the mind to understand things differently. We truly have an uncommon view. Other people don't have it, can't have it, as much as they might want to they can't see the way we do. And we can use that, we just have to have the self-belief to do so, and be able to pick ourselves up when others get spooked or envious. And, for those of us diagnosed later in life, who have been fighting with all strength for DECADES, we have to find the energy. Give yourself the time you need, but have in mind that you will be getting back on your horse soon, and off into battle.... just the right one this time.

 

[SeanF]

I think I felt defeated. Like I'd spent a lifetime fighting a battle only to find out I was in the wrong field. Thing is, that took a bit of time to work out, because my first instinct was "so, now I find out that I cannot win and I never could". But I was actually fighting the wrong battles, because I didn't know the battles I could win. The feelings that understanding triggers are a mixed bunch.

First of all it's regret and perhaps bitterness for missed opportunity, missed chances, for tears of frustration that never needed to be shed. But then, I thought, would i want to be someone else? Perhaps, but I couldn't think of wanting an NT brain; frankly that seems repulsive: worrying about celebs, who said what about who, etc. And so it's a feeling of relief. That part of my life is done. For whatever reason, that was how it had to be for me to end up here, and I am here. I can't second guess why it all happened that way, but that struggle of fighting the wrong battles is DONE!!! Woohoo!!!! I mean sure, sometimes I get sucked back in to trying to do politics (and failing) trying to be cool (and failing) trying to schmooze (and failing), but I can have the epiphany again and again: "don't need to do this".

And finally, it's the recognition that you have your own armoury of weapons, that others don't have. That's not some "2e" thing, it's that removing some perspectives on the world frees the mind to understand things differently. We truly have an uncommon view. Other people don't have it, can't have it, as much as they might want to they can't see the way we do. And we can use that, we just have to have the self-belief to do so, and be able to pick ourselves up when others get spooked or envious. And, for those of us diagnosed later in life, who have been fighting with all strength for DECADES, we have to find the energy. Give yourself the time you need, but have in mind that you will be getting back on your horse soon, and off into battle.... just the right one this time.

I love that. Thank you.