Having Difficulty Accepting My Diagnosis

[chincey_james]

Growing up, many labels were thrown at me, such as "gifted" and "over-sensitive." I always knew that I was different. But I was the sort of different that elevated expectations (much to my chagrin). People thought I was "smart" and that life was easy for me. It wasn't. I felt like an actor, constantly on the stage not for myself but for the comfort of everyone else, convincing them that I too was "normal."

I never suspected that I might be autistic until my partner became convinced of it over the lockdown. He insisted that I get tested, so I settled on an online service. I figured an online service would cost me less - not in terms of money, but energy. Half a year later, I received a diagnosis of Level 1 autism. My partner was enthused and very relieved. Truth be told, it's been wonderful for our relationship. He feels like he finally understands me. I will freely admit that I am not the easiest person to live with: I prefer dark, cool environments, despise the vast majority of social experiences, and am apparently not the best listener on Earth (something about always offering solutions and not wanting 'feelings-only' conversations).

All that being said, I am at war with myself over accepting the diagnosis. On paper, I see how I exhibit the manifestations of autism, but I can't seem to go beyond that. Maybe it's that I feel I haven't suffered enough like others who are autistic. Mostly, it's that I feel like my online diagnosis isn't as valid as an in-person one would have been. I worry that I subconsciously answered the diagnostic tests and interview in a way to ensure a diagnosis, and yet I know in my heart that I answered truthfully. Has anyone here also struggled with this imposter syndrome? My deepest fear is self-deceit.

 

[Rodafina]

Hello and welcome.

It sounds like you are in a process of self evaluation which may be even more important than external evaluation. Our degree of suffering is not what makes any of us autistic and there is no test you must pass to be here. I would recommend sticking around here for awhile and read and write as much as you can. It's a great place for learning about the diversity of autistic experiences that there are.

 

[VictorR]

Welcome.

For me, being on the spectrum is like many other identities - there are some commonalities sure but each is unique in their own way and might not align with a given norm or expectation.

I like sharing and reading experiences as that helps with finding the connections, and I find that connections drive many things.

 

[Jumpinbare]

I too, was skeptical and spent time and money taking more tests which only confirmed what I had been told. Still skeptical anyway (I can be stubborn), I began researching what it was I was supposed to be. The research I did convinced me. It was like reading about my life history.
Read posts. Ask questions. Look up things online. It can only be helpful.

 

[Suzanne]

You are the second person now, that I have heard, was diagnosed via online. However, from reading you, I detect an aspie, whereas this other person I have never detected him as an aspie and have met him in person a few times.

But, as to your post. When I was first diagnosed, I did sense a sort of ethoria feeling, because, at last, something I suspect proved true! However, it then became scary ie no back door; no choices. Was I or was I not? Now, became: I am and it did frighten me for a while.

Wow, to have a husband as support as yours, is a dream for me. He even said recently: too bad; you are in the neurotypical world; get used to it! I responded and yep, with anger: I have been trying to get used to it since I was a child!

I did the aspie quiz a lot and each time, the higher it got, because of starting to understand myself a bit more.

Ironically, when I was formally assessed ie in person ( just before covid), I had to do the aspie quiz, which amused me.

I came out at level 2 ( however, just at a point, between level 2 and 3. So, level 2 went to 38 and level 3 started at 40 and I got 39, so it has been established I am level 2.

I was told once, on seaching a way to be diagnosed that the best diagnosers out there, are aspies, because we know all about aspergers, since it becomes an obsession and that is so true.

 

[Atrapa Almas]

Hello, I feel mirrored in your text.

To me its not like a impostors syndrome. I do know I have autists traits, I do know that I am somewhat in the middle of NT and ASD (image bellow) and I have learnt usefull stuff about ASD that let me improve my life and have a better impact on those arround me.

I also have enought "traits" of having "High Capacities" (Gifted) to have read about it and about twice exceptional people and also feel identified with the "non suffering enought".

Welcome to the forum. You dont need to suffer, not to be autist to participate here.

 

[Aspychata]

To some extent you have accepted yourself, so to go backwards and label yourself may feel strange. I only ended up here to check about someone l like. Then l started reading personal accounts of stimming, (big thing l do), sensitivity at times to different things, trouble in relationships with communication issues from others here. Then l pinpointed my mom having similar attributes, and other members. So it just filled in the picture for me. Like before l only saw pieces of the puzzle, now l see things more clearly.

 

[kenaij]

I will freely admit that I am not the easiest person to live with: I prefer dark, cool environments, despise the vast majority of social experiences, and am apparently not the best listener on Earth (something about always offering solutions and not wanting 'feelings-only' conversations).
That felt hugely relatable.

I think you should mostly see it as something for yourself and detach from the struggles of other people. There are places where you can 'compare' yourself to others. Like sports. But autism is not one of those things to me. Let the diagnosis be a benefit for your life. You say it has done good for your relationship. Maybe even done good for other aspects of your life. So even if the diagnosis is false. Does it really matter? By having the diagnosis you do not hurt anyone else. You help yourself and people around you. It seems to work. And it seems to *click* for you. So just let it be about that.

 

[Misty Avich]

I was diagnosed at 8 and still have difficulty accepting it (some 25 years later).

 

[chincey_james]

I don't know what I was expecting from my original post, but I am very moved by the responses above. What's striking me is that I might be overlooking the real meaning and functional benefits of the diagnosis. It has drastically improved my relationship. It has also removed some of the burden I felt for being so different. Thank you all for taking the time to respond.

 

[Kavigant]

I don't know what I was expecting from my original post, but I am very moved by the responses above. What's striking me is that I might be overlooking the real meaning and functional benefits of the diagnosis. It has drastically improved my relationship. It has also removed some of the burden I felt for being so different. Thank you all for taking the time to respond.

I'm not yet officially diagnosed, but my wife has told me that (after 20+ years of marriage) she already understands me better after reading other people describing how their autism affects them. She and I both see my previously inexplicable behaviors in those accounts.
In addition to her being able to better understand and empathize, I am better able to understand what has been going on and I am able to be more forgiving of myself. I have spent decades thinking that I must just be "crazy" or some kind of "screw up" because I'm obviously highly capable but I can't seem to make many "normal" situations work for me.
I have already been tremendously helped by my self-diagnosis and what I've learned, but I also feel the need for "official" diagnosis for myself because I have major issues with impostor syndrome all over the place.

 

[chincey_james]

Just the fact that a self-diagnosis can have such profound beneficial effects between you and the person who knows you best would seem to be proof enough. But I get it. Even my "official" diagnosis hasn't caused all of my doubts to go away.

I remember learning in college about pragmatism, the philosophy that truth is proven by the real-world effects of ideas. If the label of autism unlocks a door of understanding that could never open before, maybe to some extent that proves the truth of the claim even in absence of an "official" diagnosis.

I have my diagnosis files, but I don't plan to use them for accommodations (at least not that I can currently imagine). I mainly wanted the diagnosis so I could have "permission" to believe, but I'm starting to realize that only I can give that permission, diagnosis or not.

 

[Shamar]

Growing up, many labels were thrown at me, such as "gifted" and "over-sensitive." I always knew that I was different. But I was the sort of different that elevated expectations (much to my chagrin). People thought I was "smart" and that life was easy for me. It wasn't. I felt like an actor, constantly on the stage not for myself but for the comfort of everyone else, convincing them that I too was "normal."

I never suspected that I might be autistic until my partner became convinced of it over the lockdown. He insisted that I get tested, so I settled on an online service. I figured an online service would cost me less - not in terms of money, but energy. Half a year later, I received a diagnosis of Level 1 autism. My partner was enthused and very relieved. Truth be told, it's been wonderful for our relationship. He feels like he finally understands me. I will freely admit that I am not the easiest person to live with: I prefer dark, cool environments, despise the vast majority of social experiences, and am apparently not the best listener on Earth (something about always offering solutions and not wanting 'feelings-only' conversations).

All that being said, I am at war with myself over accepting the diagnosis. On paper, I see how I exhibit the manifestations of autism, but I can't seem to go beyond that. Maybe it's that I feel I haven't suffered enough like others who are autistic. Mostly, it's that I feel like my online diagnosis isn't as valid as an in-person one would have been. I worry that I subconsciously answered the diagnostic tests and interview in a way to ensure a diagnosis, and yet I know in my heart that I answered truthfully. Has anyone here also struggled with this imposter syndrome? My deepest fear is self-deceit.

I had a similar experience when I was diagnosed at age 60, without having suspected it before. I always knew I was different, but I didn't know what it was. After the diagnosis, I was confused and conflicted until I separated the diagnosis from the consequences. I realized the diagnosis was correct when it answered so many questions about my life and who I was. After 12 years, I still have trouble dealing with the consequences, all the lost time, opportunities wasted, IF I HAD ONLY KNOWN, my life would have been much happier and simpler. You seem to be going through a similar internal conflict. Perhaps if you separate the two you might resolve some of the conflict. Unlike me, you at least have a partner who understands the situation and is supportive.

 

[Ursus Chainus]

You are not disordered. You are part of an order that humanity doesn’t yet understand. It is too far up its own butt to understand that there are functional variations of people and cognition that allows it (humanity) to exist.

In fact, it is so far up its own butt… it is destroying itself and everything else.

It is extraordinarily difficult to be what we are in this time.

You do matter. You are important. You may not yet understand your place.

You matter!

 

[chincey_james]

After 12 years, I still have trouble dealing with the consequences, all the lost time, opportunities wasted, IF I HAD ONLY KNOWN, my life would have been much happier and simpler. You seem to be going through a similar internal conflict. Perhaps if you separate the two you might resolve some of the conflict. Unlike me, you at least have a partner who understands the situation and is supportive.

I hadn't considered that, but it's true. If I could have been diagnosed earlier, if my family could have known earlier, the difference that would have made in my life is hard to overstate. Great point. Also, sorry to hear your partner is not yet fully understanding; hopefully, that will change with time.

You are not disordered. You are part of an order that humanity doesn’t yet understand. It is too far up its own butt to understand that there are functional variations of people and cognition that allows it (humanity) to exist.

Thank you. That's what it comes down to: functional variations of people. This world seems to be designed for a narrow sliver of people. Another thing that will hopefully change with time...