does the diagnosis really explain anything at all?

[VictorR]

For myself, it was the self-identification that was the game changer, as now I knew why I was different and could read voraciously on the topic.

The diagnosis itself, though taking several years to get, was more of a formality that I pursued to ensure that I had access to supports if needed.

 

[Heyphelpsy]

Has the diagnosis of Asperger's (or a similar diagnosis) ever explained anything about you?
This diagnosis doesn't explain anything at all really if you think about it.
It really says things we knew anyway. Issues with meltdowns (or shutdowns) or issues with social situations. I think we already knew that before the diagnosis.
Diagnosis is really only something you need in order to get some services (or meet other people with this diagnosis).
I have tried to use the diagnosis to explain a lot but it did not work very well for me.
The diagnosis only really states what is obvious. It is too broad, less concrete. What we really need is to go to professionals who can meet us where we are and tell us what our concrete issues are. We need to know our very concrete issues. What we on a concrete level struggle with. Diagnoses don't tell much about our concrete situations.
does the diagnosis really explain anything at all? Does it really help you see your concrete issues/difficulties?

please don't read this and call me a person who complains. I just want to understand what diagnoses are all about. Feel free to think about ASD as you want.

I sometimes hear about people who say that after getting an ASD diagnosis a lot makes sense. I interpret this as: they have difficulties with social situatiions (this is the sypmtom). Professionals say that they have difficulties with social situations ( the exact symptom they were aldready aware of). They say that now this makes sense. How can being told something like that make sense? To me it is very unhelpful.

My diagnosis gave me a lot of clarity. For example, I used to be very oblivious to how other people felt and how my actions or words could effect them. People at my work generally disliked me because I was unaware of my behavior and social rules. I had no idea I was messing up socially until I hit a breaking point, and went to a doctor. After learning about how i experience autism, I have made changes so I can build relationships. Now im hyper aware of trying to figure out feelings, im just bad at it, but at least I try. I also try to observe what other people are doing and learn how to behave in certain social situations so im not rude or innapropriate. My diagnosis changed a lot for me. I'm not really sure if im relating to your question in the correct way...im sorry if I'm wrong. I hope you find an answer that helps.

 

[harrietjansson]

My diagnosis gave me a lot of clarity. For example, I used to be very oblivious to how other people felt and how my actions or words could effect them. People at my work generally disliked me because I was unaware of my behavior and social rules. I had no idea I was messing up socially until I hit a breaking point, and went to a doctor. After learning about how i experience autism, I have made changes so I can build relationships. Now im hyper aware of trying to figure out feelings, im just bad at it, but at least I try. I also try to observe what other people are doing and learn how to behave in certain social situations so im not rude or innapropriate. My diagnosis changed a lot for me. I'm not really sure if im relating to your question in the correct way...im sorry if I'm wrong. I hope you find an answer that helps.

To me it looks like they told you about some symptoms you have. This was helpful for you but not for me. My parents already knew I struggled with social situations so they were already aware of the symptoms. I were aware at times. I did not become more aware due to a diagnosis. It helped you but it did not help me.

 

[harrietjansson]

how can people not understand my question?
How can symptoms explain the symptoms? and how can a very non-concrete diagnosis of some non-concrete symptoms be helpful?
My thoughts go like this:
some people say "finally I understanmd what is going on. I have asperger's and have difficulties with social situations. This explains why I have difficulties with social situations".
How can that explain anything or even make things more concrete?
You say "I struggle with social situations" (I use that issue as an example) and the professionals say "you struggle with social situations. we call it asd.". You say "that explains so much" and I say "it does not explain anything at all. I only gave you a fancy name for it"
It's like saying "you sang low notes as a female and we call it contralto" and I say "that is a fancy name for it".

 

[Major Tom]

how can people not understand my question?
How can symptoms explain the symptoms? and how can a very non-concrete diagnosis of some non-concrete symptoms be helpful?
My thoughts go like this:
some people say "finally I understanmd what is going on. I have asperger's and have difficulties with social situations. This explains why I have difficulties with social situations".
How can that explain anything or even make things more concrete?
You say "I struggle with social situations" (I use that issue as an example) and the professionals say "you struggle with social situations. we call it asd.". You say "that explains so much" and I say "it does not explain anything at all. I only gave you a fancy name for it"
It's like saying "you sang low notes as a female and we call it contralto" and I say "that is a fancy name for it".

People do understand and have been answering you, you just aren't open to the ideas . I'm unwatching this thread now. As constant questions of the same nature tire me out and I have real world things to do.

 

[Heyphelpsy]

I don't always understand things as stated. But people sometimes just need the diagnosis to find appropriate services and help. If you aren't diagnosed, you don't get the help or accommodations. Maybe it does nothing for you in terms of learning about yourself, but gives you access to a world of services, especially if, for example, you need accommodations in the workplace. Just an example.

 

[Thinx]

I am not diagnosed, but I spent a long time trying to learn how to improve my social skills especially in unstructured social interaction, really many years. But puzzlingly, I couldnt improve in some areas, and eventually I started to think there was actually something different in the way I perceived the world.

Then I found out about Aspergers and autism as part of my work. It fitted my experience of difference. So then I realised I was maybe someone with Aspergers. This explains how I am. But before, I didn't realise that.

My understanding of why I have difficulties with unstructured social communication is that I process differently and in some ways more slowly, so neurotypical social communication is hard to follow or join in with. I just don't get it.

I stopped trying to change that, when I realised the reason was a brain difference.

I suppose if you had got a different diagnosis, they might have had a way to treat your communication issues, say if it was due to something changeable?

 

[harrietjansson]

I stopped trying to change that, when I realised the reason was a brain difference.

ok

 

[Finder]

people already knew I had difficulties with socializing before I received a diagnosis so a diagnosis did not help at all. What did you and other people learn that you did not know before? I ask because my diagnosis did not give me and my parents new info.

But did you know why you had difficulty before your diagnosis? Lots of people have difficulty socializing, but don't have autism.

I was never told the reasons why I have difficulties with theory of mind. Did they explain why you have difficulties with theory of mind?

No, but I did research it.

that could be something a diagnosis can tell you. On the other hand any psychologist without diagnosing you should be able to tell you that (this is my opinion)

Really? I could have had anti-social disorder, borderline personality disorder, or been a narcissist. Without I diagnosis, how can you point to the cause of the issue?

 

[Magna]

Has the diagnosis of Asperger's (or a similar diagnosis) ever explained anything about you?
This diagnosis doesn't explain anything at all really if you think about it.
It really says things we knew anyway. Issues with meltdowns (or shutdowns) or issues with social situations. I think we already knew that before the diagnosis.
Diagnosis is really only something you need in order to get some services (or meet other people with this diagnosis).
I have tried to use the diagnosis to explain a lot but it did not work very well for me.
The diagnosis only really states what is obvious. It is too broad, less concrete. What we really need is to go to professionals who can meet us where we are and tell us what our concrete issues are. We need to know our very concrete issues. What we on a concrete level struggle with. Diagnoses don't tell much about our concrete situations.
does the diagnosis really explain anything at all? Does it really help you see your concrete issues/difficulties?

please don't read this and call me a person who complains. I just want to understand what diagnoses are all about. Feel free to think about ASD as you want.

I sometimes hear about people who say that after getting an ASD diagnosis a lot makes sense. I interpret this as: they have difficulties with social situatiions (this is the sypmtom). Professionals say that they have difficulties with social situations ( the exact symptom they were aldready aware of). They say that now this makes sense. How can being told something like that make sense? To me it is very unhelpful.

What did my diagnosis do for me? I'm one of those that felt it was the missing puzzle piece I couldn't identify in my life. When I was diagnosed, that last puzzle piece made sense of my life.

The best way for me to summarize what my diagnosis did for me:

For the first time in my life it shifted my perception of myself from that of an abject failure to someone who is autistic.

"Why do I continually have problems with social interaction? No matter what I've tried throughout my life, it just doesn't change at a core level. Why?"

"Why am I overly sensitive to sounds, smells, touch, repetitive noises? Other people aren't bothered by it. I need to change."

"Why have I felt like an outsider, an alien literally all of my life where no amount of behavioral modification, etc changes that feeling?"

"No matter how hard I try, I just can't multi-task like other people can. What is wrong with me? I'm just not trying hard enough. I know I can change because other people can do it. Sure, I can practice and get a little better, but the problems I have seem to be unchangeable at the core. Why?"

"Why do I always seem to fail at things that others can do easily? Why do I have to give so much thought to do those things when others don't have to think about them? I'm a failure...."

"I'm autistic. You mean there's more than one neurotype? You mean one neurotype isn't "better" than another, they're just different? You mean I don't have to constantly strive for, compare myself to, measure myself against, come up short and fail at being neurotypical because neurotypical isn't the only "good" neurotype? You mean when neurotypicals try to elevate their neurotype as being superior to mine I can brush them off with a glorious and complete lack of interest in wanting to be like them?"

"Hey...for the first time in my life I've accepted myself and like myself! There's a reason I am who I am. Cool!"

 

[Fino]

I understand what you're saying. This is a common criticism of psychiatry. Diagnoses don't explain anything and they don't teach anything, they describe. Diagnoses are descriptions. The purpose of the description is to know which resource to direct you to and medications to prescribe. It also allows researchers to study the description under the umbrella of a single term.

Things with names are less scary. People here are saying they were relieved that they weren't broken necessarily, they just have this thing called "Autism." It's seen as a cause of those related behaviors, and when something has a cause, it feels less shameful and confusing. Rather than deal with ten disparate struggles, you think of all ten struggles as a single struggle, called Autism.

Another benefit is that it connects you with people who have similar struggles, as it has done for you in the case of this forum.

 

[Finder]

how can people not understand my question?
How can symptoms explain the symptoms?

I am not sure you are understanding us. You certain seem to dismiss those who found the diagnosis very profound.

Autism is not a symptom, it is the cause. The symptom is, for example, a social communication deficit. You seem to be saying that autism is the symptom where you are saying the social communication deficit is autism. But that is simply conflating the symptom with the cause.

Lets give a different example. You have a fever. That is a symptom. Your condition needs to be diagnosed in order for you to address the underlying cause: is it a cold, the Flu, COVID, or something else? Once you are diagnosed with the cause, you can then address the problem. The problem is not the fever, but what causes the fever. But to say the fever is the illness is mixing up the symptom with the cause.

I was having huge social communication problems. I did not understand why until I was diagnosed. That diagnosis is very powerful as it puts my issue into context--it told me why.

Why is that difficult to understand?

I guess I am uncertain about what you are trying to say. Knowing you have a social communication deficit does not mean you have autism. That deficit could be caused by different things, each with a different solution. Understanding the underlying cause of that deficit gives you important knowledge.

Sorry, I really am uncertain about your point.

 

[Crossbreed]

Has the diagnosis of Asperger's (or a similar diagnosis) ever explained anything about you?

Yes. My perceptions of "typical" thought processes are, in fact, not typical. I have begun to observe those differences in NTs and it helps me to bridge and improve the communication gap, if imperfectly.

It is comforting to know that our base condition is a difference rather than a defect.

 

[FIVER]

my understanding is that a diagnosis might explain things to some people. To me it doesn't explain much.
Being put into a category just confuses me. Trying to let a certain category explain a lot is bad for me.
I can't stand being put into a certain category like they do in music or psychology.
How can anyone be helped by being out into a category?
Are not too many of us seeking too many answers from ASD diagnoses?

I sometimes hear about people who after receiving a diagnosis get very emotional and start crying.

'All my life suddenly made sense'
'All my life suddenly made sense': how it feels to be diagnosed with autism late in life

what is it that ASD diagnoses do explain that would make people say things like that?
This is the question I am asking with this thread. It would be interesting to hear from people who has an answer to this question.

I wrote "I have tried to use the diagnosis to explain a lot but it did not work very well for me.". Why do certain people then find that ASD explains a lot when it did not explain much to me? It seems to be who were diagnosed later in life who are the people saying that ASD explains a lot. I wrote "The diagnosis only really states what is obvious" i.e. in my life people already knew about my issues before I was diagnosed. They already knew I struggled with theory of mind and other ASD issues. This was why they want me to get a diagnosis. The diagnosis did not state anything new. What new things do people learn after getting a diagnosis?

I think what you are looking for is a way to develop, a way to get on with the world. Is that what you are asking?

 

[SDRSpark]

I think it depends on the person. A lot of us were self-identified long before we were officially diagnosed (if we ever get officially diagnosed). So the official diagnosis is confirmation, validation, and opens a pathway to some services and accommodations (maybe) but it doesn't actually give us much new information, because we've pretty much already figured it all out before we got to that point.

However, if you didn't have a clue you were autistic before getting that diagnosis, it gives you a lot of new information and changes your perspective in a lot of ways.

 

[Linda Night-owl]

I knew I was different from everyone else. Sure, I knew that, and my diagnosis which I got last week at age 73 didn't tell me anything new about that. It did confirm to me that my self-diagnosis was valid.

Before my diagnosis, I kept having doubts and denial about my self-diagnosis. Either I was a failed NT, and my parents were correct in criticizing me for what they saw, and I also believed, were my failures that were entirely within my control and I should have tried harder, or that I had a developmental difference in my brain's internal connectivity that was never within my control. There is a video on YT by Dr. Temple Grandin titled "The Autistic Brain" where she talks about the differences in an Autistic brain compared to an NT brain and she shows actual scans of her own brain compared to an NT brain. So it isn't that symptoms are only explaining symptoms, but that the symptoms of ASD indicate an actual difference in the wiring of our brains. Maybe I can finally stop blaming myself for something that wasn't my fault, and realize that I did the best I could.

Instead of blaming myself for being a failed NT, I now know that my ND brain is not wired like a NT's brain, and I am not to be blamed for my Autistic traits. No one should be blamed for something that is out of their control.

What the Psychologist told me is that I am not abnormal at all, but that I am a normal Autistic woman who had a punitive father. Now I can begin the healing process as I re-evaluate my life in light of my diagnosis. Now I can stop wondering if I'm a hypochondriac. Now I know I'm not gaslighting myself.

Now my counselor will have the confirmation she wanted, so she will know how to help me with my social interaction issues. The same problems can require different strategies depending on the cause. She won't be trying to help me with Social Anxiety, which is not the cause of my social interaction issues, but with strategies I can use based on my being Autistic. Treating me for Social Anxiety would be a waste of time. The anxiety came about because of my social interaction issues, and was not the cause of them.

With an ASD diagnosis, I can now have realistic goals for myself. Before I always wanted to find some cure that would allow me to be like everyone else, and at ease in most social situations. Now I understand that's never going to happen, but maybe there are strategies that can help me to do better. At least now I know what I'm dealing with.

You talked about treating concrete issues, but those issues can have different causes which are addressed differently depending on the cause. The issue can't be treated correctly if the underlying cause is mistaken or is in doubt. If I have balance issues, physical therapy may help in some instances, but if the cause is a brain tumor, physical therapy would be a waste of time, and would delay needed treatment.

As another analogy, I may self-diagnose as being diabetic based on my symptoms and research, but in order to have that validated, I have to be tested by a doctor. That professional diagnosis has value. When a doctor confirms I am diabetic they aren't only confirming a list of symptoms I already knew I had, but confirming I have a physical difference in my pancreas as well, a definite cause for my symptoms, a cause that can be treated. With a proper diagnosis, the cluster of symptoms make sense.

 

[Trophonius]

It only gives you a label.

This label can be useful for other professionals, it gives an outline of how to treat you until they know more about you. To ourselves, we shouldn't put much weight on it to the point it sets us limits.

 

[Au Naturel]

"after getting an ASD diagnosis a lot makes sense."

Completely reasonable.

If your entire life you have been told your difficulties are all in your imagination, the result of moral shortcomings, mental retardation, or your own bad choices, hearing that diagnosis explains why it was impossible for you to be anything else no matter how hard you tried. You can stop beating yourself up. It is a good thing to know you are not imagining things, antisocial, morally deficient, mentally unstable, or retarded.

Mild autism was never an option you'd be aware of. Now that you have a diagnosis everything makes sense. You can stop berating yourself. You can stop wondering, "Why am I so unwanted???" Autism is not curable but the effects can be mitigated. You can start working on the things you can affect and working around the things you cannot.

 

[Au Naturel]

It only gives you a label.

This label can be useful for other professionals, it gives an outline of how to treat you until they know more about you. To ourselves, we shouldn't put much weight on it to the point it sets us limits.

Diagnosis is not just a label. You wouldn't say diabetes was just a label.

Any accurate diagnosis has predictive value. It is like a scientific theory but on a personal level. The diagnosis directs you to coping strategies that have worked for others in the same boat.

Don't ever think that autism at any level isn't a disability. If it weren't, this forum would not exist.

 

[Au Naturel]

people already knew I had difficulties with socializing before I received a diagnosis so a diagnosis did not help at all. What did you and other people learn that you did not know before? I ask because my diagnosis did not give me and my parents new info.

"Why" matters. You may have known your symptoms but without the mechanism behind it, it is impossible to work out effective ways to address the situation. There are LOTS of reasons one might be poor at socializing. Different conditions result in the same symptoms. Different conditions are treated in different ways.