Struggle with Diagnosis?

[SeanF]

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?

 

[Neonatal RRT]

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?

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.

 

[Misty Avich]

Yes, some 24 years later I'm still struggling to come to terms with the diagnosis while not even sure if I had been misdiagnosed or not. There are lots of reasons as to why I carry this burden and feel insecure about it, but I won't ramble on.

 

[Outdated]

I knew I had "mental problems" from a very early age. From people constantly trying to "make me be normal" throughout my entire childhood I also have a very strong aversion to anyone trying to alter my mindset and a real distrust of therapists.

So I spent most of my adult life self diagnosing. It wasn't until I was in my late 40s that I started to learn about autism and everything started to make sense to me. The relief this brought to me was unbelievable, all of a sudden I was able to make so much sense out of the way my life had turned out.

I didn't get a formal diagnosis until I was 55, having a piece of paper was nowhere near as meaningful to me as understanding more about myself. When I went for my diagnosis I wasn't asking if I was autistic, I was telling them so. In combination with other factors such as age that diagnosis got me a full pension and made me very happy.

 

[Ronald Zeeman]

I self-diagnosed, never had an issue being who I am explained a lot do not consider it a burden but rather a gift.

 

[Suzanne]

Amazed at first, because generally when I have a hunch about something, I am told I am wrong, so for the first time, to have a confirmation of what I believed at last was/is going on with me, was a massive buzz and then, panic set in.

For a while now, though, I am feeling though the diagnosis was wrong, despite the fact, that it was not a simple matter of me talking with the right words and thus, them diagnosing me. Nope, on the contrary, it was intense and I received a typical aspie score the first day of being tested, but despite that, a nasty thought keeps proping up that perhaps I don't have ASD. They made a mistake? This is also, all despite me continuing to manefest traits and how I am generally treated.

I think it comes from the fact that so many now are popping up to say they are autistic and many are grossly misdiagnosied.

I was basically told that I am not autistic. I have Asperger's syndrome ( hubby asked to confirm). So, to sum it up, it is the so called professionals who happened to be confusing us all.

 

[Shamar]

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?

My personal experience is that the diagnosis has two components. The first is the diagnosis itself at age 60. Once I learned a bit about autism, I had no problems with that, it explained my life so well that there was no question. The other component is having gone so long without a diagnosis, and what that did to me. All of the missed opportunities, all of the things I could have accomplished, HAD I ONLY KNOWN. I am still trying to come to terms with that. None of the psychiatrists, psychologists, therapists, and counselors hinted at it, even when I presented a list of problems the read like the diagnostic criteria. You may wish to think about that aspect of it, if the depression is the actual diagnosis, or the consequences of not having been diagnosed. And yes, depression was part of the consequences.

 

[Slime_Punk]

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?

Not sure if it's related, but I felt kind of dehumainzed or sub-human for a few years. In fact, sometimes I still do.

From my limited experience, this seems pretty normal, along with doubts about the diagnosis, etc. I'm not sure if it gets easier over time or if some of us just get used to it over time, but whatever that feeling in doesn't stay set in stone. It oscillates, it's malleable, and always subject to interpretation and reframing.

I also think this is true for people who suspect they're on the spectrum and have never had a diagnosis, because I lived that way for much longer and it was almost certainly worse in every possible way.

 

[Misty Avich]

Getting a diagnosis in childhood has its perks too. I know my life would have been better if I hadn't got a diagnosis so early on, but I'm not speaking for everyone. In fact for the majority of autistic people, getting a diagnosis early in life has a more positive outcome. I'm just an odd case I think.

It might have been because my parents weren't prepared for a challenging child, as I started off so well up until age 4 and a half, development and behaviour-wise. So after displaying such out of character behaviour when I first started school, I was like a bug under a microscope and my parents were forced to take me to clinics to get me assessed and diagnosed with something, otherwise they were under threat of being labelled as bad parents if they denied that my behaviour wasn't due to bad parenting (which it wasn't). So none of this would have happened if I had just been normal like all my peers and cousins. It was a stressful time for me and my parents, and although my mum had told everyone and their dog about my diagnosis (which meant she wasn't ashamed of it or anything), I still knew that she preferred I didn't have anything "wrong" with me and that I was just a normal, non-challenging child. And I was normal in lots of ways compared to a lot of children on the spectrum. It was my behaviour and difficulty managing my emotions that was the problem, which seemed more typical in ADHD, although I wasn't diagnosed with that until adulthood. But that would have explained it much better.

 

[Ronald Zeeman]

I never doubt my hunches life is a maze if you can get through it without out seeing a dead end keep going it's probably the right way.

 

[Mary Terry]

Amazed at first, because generally when I have a hunch about something, I am told I am wrong, so for the first time, to have a confirmation of what I believed at last was/is going on with me, was a massive buzz and then, panic set in.

For a while now, though, I am feeling though the diagnosis was wrong, despite the fact, that it was not a simple matter of me talking with the right words and thus, them diagnosing me. Nope, on the contrary, it was intense and I received a typical aspie score the first day of being tested, but despite that, a nasty thought keeps proping up that perhaps I don't have ASD. They made a mistake? This is also, all despite me continuing to manefest traits and how I am generally treated.

I think it comes from the fact that so many now are popping up to say they are autistic and many are grossly misdiagnosied.

I was basically told that I am not autistic. I have Asperger's syndrome ( hubby asked to confirm). So, to sum it up, it is the so called professionals who happened to be confusing us all.

Autism and Aspergers are the same thing. The US no longer uses the term "Aspergers" but apparently it is still used in some European countries.

 

[Tom]

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?

 

[Suzanne]

Autism and Aspergers are the same thing. The US no longer uses the term "Aspergers" but apparently it is still used in some European countries.

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.

 

[Misty Avich]

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?

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.

 

[Ronald Zeeman]

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.

We spent too much time defining labels when I worked with colour the only people who concerned themselves with a particular colour name were the sales department. I worked with number definitions and differences.

 

[SeanF]

My personal experience is that the diagnosis has two components. The first is the diagnosis itself at age 60. Once I learned a bit about autism, I had no problems with that, it explained my life so well that there was no question. The other component is having gone so long without a diagnosis, and what that did to me. All of the missed opportunities, all of the things I could have accomplished, HAD I ONLY KNOWN. I am still trying to come to terms with that. None of the psychiatrists, psychologists, therapists, and counselors hinted at it, even when I presented a list of problems the read like the diagnostic criteria. You may wish to think about that aspect of it, if the depression is the actual diagnosis, or the consequences of not having been diagnosed. And yes, depression was part of the consequences.

I think this is definitely part of it. I mean I have ADHD as well, so I present a bit differently. But honestly, my whole life is explainable through this lens. It is just very frustrating for me that my whole concept of self was so off base and that I wasted so much energy trying to be something that I was never going to be capable of being.

 

[SeanF]

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.

While I did not have the additional layer of being a girl, I do understand a lot of what you are saying. And thank you for sharing and being open about it.

 

[Judge]

I was formally diagnosed with chronic clinical depression, OCD and social anxiety in 1982. Likely cormorbid to my autism which has never been formally diagnosed.

So for me it has always been a "package deal". Though whether or not I might also have ADHD has remained a personal mystery to me as well.

 

[Nervous Rex]

No depression, but maybe .... defeatism? Or an identity crisis?

I felt like autism had predetermined almost my entire personality - all my strengths, weakness, interests, and aversions are tied to autism. I thought, "When you take away the autism, what's left of me that really and truly me?"

I came to the conclusion that after you take all that away, what's left is my decisions. So I have certain talents and shortcomings - what I decide to do with them is up to me.

 

[Nervous Rex]

I didn't get a formal diagnosis until I was 55, having a piece of paper was nowhere near as meaningful to me as understanding more about myself.

100% agreed! For me, trying to fit in and operate the way everyone else does was like trying to work a bulldozer using a Lamborghini manual. My diagnosis freed me to accept that I am different and I don't operate the same way as everyone else. They're Lamborghini's - they go fast, I don't. But I can things they can't.

I started finding what works for me and "writing my own operation manual".

In that way, my diagnosis has been liberating.