Too much of a coincidence? I keep denying it could be true.

Post Reply New Topic

I know this post is long and I know I'm being repetitive (I've talked about some of these things before) and I'm sorry about that but I haven't allowed myself to think about these things until recently (now that my assessment is almost done). Please bear with me. I need to get this off my chest because all this doubt is coming back and I need some reassurance or something.

What if the diagnosis I'll quite likely get (though it's not for sure) is wrong? I don't even know if I'll get the diagnosis but I don't want it if I'm not supposed to get it. Misdiagnosis is, in my opinion, not a good thing.

It feels like all of this is too much of a coincidence to be true. A few years ago I was at home, sitting in my sofa and solving one of my Rubik's cubes over and over and over again while pondering things I had been thinking about for years (why I had always felt so different, why I felt so miserable etc). I then thought that there must be someone out there in the world who's like me and who feels the way I feel so I got my laptop and googled it. I don't know exactly what I googled but the word "Asperger's" showed up. I followed the link and ended up at some sort of website and soon after that I found this forum. I read a lot of posts here and I felt that I could relate to a lot of what people wrote about different situations. There were, however, quite a lot that I couldn't relate to as well. I got "obsessed" with finding out what was "wrong" with me and why I had always felt the way I felt. I felt so lonely it was almost painful. I got more and more curious about Asperger's and therefore spent a lot of time reading about it. I started to realise that an ASD diagnosis could potentially explain a lot about my life, but I was never convinced I actually had it. I doubted it all the time. I didn't have one of those "moments of clarity" that people have mentioned here several times.

The more I thought about Asperger's and my life, the more self-aware I got. I've always been very self-aware but it got worse. I started to constantly analyse everything I did and said, my surroundings and the way I functioned in the world. I have a lot of OCD tendencies (I think I'm diagnosed with OCD but the psychologist who is assessing me told me some of my compulsions etc might be explained by a possible Asperger's diagnosis) and I think those tendencies latched onto the whole Asperger's thing. It was around this time that I first came in contact with psychologists. I sent in a self-referral (not sure that's what it's called in English) for an ASD assessment and came in contact with other psychologists to get treated for anxiety and depression. The psychologists I met agreed that my self-referral was a good idea and they were also convinced I had problems with anxiety etc (which is something I've never doubted myself).

Anyway, I couldn't stop thinking about AS and the assessment. I started making long and detailed lists about my traits and it eventually made me feel so anxious I got panic attacks. I then realised I had to stop thinking about the whole thing. I decided to stop visiting this forum (this was a while ago) and I decided to stop reading about AS and other diagnoses. The fact that I started studying helped a lot by keeping me busy and even though it triggered (and still triggers) a lot of anxiety due to pathological perfectionism, social anxiety etc, it managed to keep me away from my "obsession" with finding out what's "wrong" with me etc. I didn't allow myself to think about AS regularly until earlier this spring, just before my assessment was about to start.

I've changed. I've changed a lot since the day I moved away from home and since the day I, about two years later, found out about Asperger's and started reading about it. I've always been very withdrawn and introspective and I've always distanced myself emotionally and physically, but it's gotten a lot worse during the past three years or so. I'm not as good at taking care of myself as I was when I lived at home (perhaps that's because my parents took care of me, I don't know) and I find other things more difficult now as well. Sounds are more difficult (though I've never really liked sounds), I find it more difficult to organise my thoughts nowadays etc. A lot of that is probably due to the fact that I'm doing worse mentally now than I did before but it just feels like everything's gotten worse since I found out about AS and that it's too much of a coincidence to make sense. It triggers all these thoughts that I know I've mentioned loads of times before: what if I've read too much about AS and I've "picked up" traits/symptoms that I don't really have? What if I'm imagining things? What if I'm delusional? What if I'm lying or exaggerating though I'd never do that on purpose?

All these thoughts have returned now that my assessment is almost over. I realise that this post is very long and that I probably sound like a madman (well, madwoman) but I'm not crazy, just anxious/worried. What really worries me is getting a diagnosis if I don't really have Asperger's. That would be bad. It feels too improbable that I'd randomly find AS when googling and that I'd now quite likely end up with a diagnosis (though it's, like I said, not for sure yet). I keep denying it could be true and I keep thinking it must all be wrong somehow (even though the psychologist who is assessing me seems really competent and works with people with ASD and ADHD on a daily basis).

Any thoughts?

Rebbieh, I feel your pain. I've been down that long and winding road too, only to find it corrupted my self-esteem quite a lot. The thing about Asperger's/ASD is that they work via a spectrum, and they affect different people in different ways. There's a lot of stuff that's common with people with AS that I don't relate to either, but after years of doubting my diagnosis, I am sure I'm on the spectrum. Judging by some of the things you said, it does sound like you have traits of Asperger's, so it wouldn't really be correct to say you don't have it; you're just "high" on the spectrum. Don't forget that Asperger's traits are what brought you to research the condition, not the other way round, so I don't think you're delusional. I wouldn't worry about it too much. But you should definitely mention your concerns to your doctors as you're being assessed. It sounds like they know what they're doing (which seems to be very rare in doctors these days, or at least it is in the UK) so I would trust them. Most importantly, don't feel like they will judge you for how you're feeling. They deal with patients with all sorts of conditions every day and have probably heard all sorts of things.
Hope the assessment goes well and keep your chin up!

Last edited by Laddo on 05 Jul 2014, 7:39 am, edited 1 time in total.

I've been in a really similar situation to you, but I'm busy ATM so I have to keep this short, so I'll come back and edit this post either in a few hours or tomorrow.

If it is any solace, please remember that diagnostics are a somewhat subjective process. It is wrong to count any given diagnosis as a 'gold standard' that somehow merits you as an Asperger's individual (or whatever the Dx). IMO, people give way too much credit to diagnostics! Now, certainly there are clear-cut cases, such as when a child is clearly exhibiting classic autistic behaviours. But in your case, and maybe for most adults seeking a diagnosis, this is a grey zone.

Some adult seek a diagnosis for their own peace of mind (which seems to be your case) - that's fine, but remember to not place too much importance on any such label. In actuality, it does not change your identity at all! For an adult, a Dx may only serve to allow you an appropriate accommodation at work/school. And nothing more.

Diagnosticians do not necessarily deserve all this credit - while some are reputable, conscientious and thorough, others are kind-of haphazard. In sum, psych diagnostics do rely on their subjective interpretation. IMO, adult Aspergers diagnoses are now becoming too commonplace with lax criteria. While I do respect and understand that some adults self-diagnose themselves, there are certainly mistakes (!) and there is not much stock in any given self-diagnosis!

As a dramatic example, I have a good friend who is clearly neurotypical. Super well-adjusted intuitive neurotypical. Just for fun, he took an online Are You An Aspie quiz. Surprise! He scored pretty high, as nearly an Aspie! Why? Well, because he is naturally academically inclined and really does enjoy spending time at the library alone and he is introspective. In fact, it is known that many/most academic researchers &/or scientists will automatically score really high on such quizzes; it's a bogus distinction! Clearly such 'diagnostics' are wacky and pretty much meaningless. I do not give much credence to such quizzes.

In any case, maybe your over-thinking this? Instead, just rely on your own instincts and focus on being successful in life and making new friends without focusing so much on 'what' you might be. Instead, just make the most of who you are.

Incidentally, I was diagnoses with autism when I was little, and in a dramatic way. Plus I have had times during my life when I do not speak at all. I do realize that adult diagnostics are a different thing altogether.

I know that feeling exactly. I had a twinge of it just a week or so ago. It's bs, though. You know you feel "normal" or whatever, because you are, for you. Your brain is running up to spec. The thing is, the specs for your brain are a bit different, a bit outside the typical range.

If you are like me, against this fairly natural doubt, you have not only the professional opinion you sought, but year after year of undeniable evidence that there was something different about you. And the shape of that difference is congruent with the thing they call autism.

That's it.

Even after the diagnosis this thought and the related emotion will return, but it is what it is and you are what you are, regardless.

Its a spectrum disorder so even though there are things that don't fit in with your symptoms it may just be because you're not on that end of the spectrum.

The therapist that gave me her opinion told me I definitely had AS even though I was arguing with her that the most common indicators were not at all present. After I left I doubted her diagnosis and like you, once I was armed with 'the list' of indicators I noticed that yes, even though I did not have the common ones I definitely had many of the others. It took me some time and research to solidify my trust on the diagnosis... I checked and cross-referenced the indicators I had and none really fit in any other category other than AS.

Its hard to suddenly find yourself with a label that explains 'you'.

... its almost like the feeling you get when in the first star wars prequel film where they explain the force as being midichlorians and such.. fully scientifically explainable and quantifiable.... it ruined the mystique of the original films by giving the one 'special' thing in the film a label and an explanation.

Your 'Force' has been labelled and explained. It is not 'with you'; you're stuck with it

It seems like your anxiety is already torturing you ahead of your diagnosis.
I don't know what to do about that, but are you getting regular therapy for anxiety?

Unlike you I didn't read up on AS before being evaluated for AS. But I became much worse after being diagnosed. (My psychologist thought this was odd tho.) I went from being pretty normal and didn't think much of my behaviour, school was OK and I was outgoing and had friends to hang with and so on. Then I got diagnosed and I went downhill from there. Being an aspie I find it a little hard to judge myself and what others think if me, so I started to to overreact and thought I was much worse than I really were. So don't worry about it too much.

If you are getting your evaluation at a neuropsychiatric clinic at landstinget then they are likely to have enough experience to tell if you have ASD. I think it is pretty common for them to see patients that doubt if they have it or not, think that they are overreacting or that something else explains their symptoms.

... Don't let what you want skew your perspective of how things are or may be.

When it comes to a proper diagnosis... preferably from a certified expert... the best thing to do is just be completely honest... and NOT to let any personal biases cloud your thoughts nor influence your behaviour.

And irrespective of what the final judgement of the diagnosis may be... it'll only be words at most.

No matter what we may or may not relate to, we're not all the same. We're considerably less "the same" as each other than mundies are one to the next. That is kinda why diagnosis can be difficult from an outside perspective.
And irrespective of what a diagnosis might say.... you're just you.
Hate to sound trite... but at the end of the day, that is all it comes down to. You are the way you are. And whether you fit mostly or partially into some category or other is only a means to a few ends... It isn't that important.

rebbieh - your post reflects some of the things which I have been saying on this forum, and I really hope that I have not contributed to your pain.

But the fact remains that Autism is an enormous 'grey area', and I think that the previous replies to your post support that opinion.

I would suggest that you give your assessor a really hard time, and put pressure on him/her to convince you that any diagnosis (or non-diagnosis) which he/she might award you has any power to improve or change the rest of your life.

Thanks for the replies, everyone. A lot of you have mentioned that autism is on a spectrum and that it's a grey area. I have a hard time grasping the fact that autism is such a "grey area". I don't like grey areas. I don't really see grey areas. I like facts and absolute/specific/unambiguous answers. Do you know what I mean? I find it difficult to understand that you can still have autism even though you don't have all the symptoms. I understand it intellectually but I don't really get it. It's a bit hard to explain.

I think this whole process (finding out about AS, getting assessed, waiting for the result etc) is draining and I can't stop thinking about it. Even when I'm working (I'm working on a project in a neuroscience lab this month) I spend my days worrying about getting a diagnosis if I actually don't have AS or the other way around.

LabPet: It's true that I seek a diagnosis for my own peace of mind. That and to be able to figure out how to handle things better (studies, people, emotions etc). You said not to place too much importance on a label like Asperger's and I understand that's important but I think it's difficult. I mean, I've felt different since I was a child and I've had to deal with anxiety and depression and loads of questions about myself for years and years (at least half my life). If I was to get a diagnosis and if I eventually accepted it, it would explain why things are the way they are for me so I don't really know how to not place importance on the label. I'm not sure I can explain it properly but I hope you understand what I'm trying to say. Anyway, I definitely think I'm over-thinking things. I'm a master at over-thinking things. My head is filled with thoughts, questions and anxiety pretty much all the time.

Dantac: How did you come to terms with the diagnosis? How'd you learn to accept it? You said that once you were "armed with 'the list' of indicators" you noticed that you had a lot of the symptoms/traits. What do you mean by "the list of indicators"? The papers from the assessment? Perhaps those will help. Perhaps getting it all on paper will make things more clear. If I get the diagnosis that is.

btbnnyr: No, I'm not getting regular therapy for anxiety at the moment. The psychologists have told me they want to wait and see what the assessment shows before deciding what to do. I'm supposed to get some sort of therapy/help with handling stress but I've only seen that psychologist twice since we started in March and now it's summer and I won't see her until the end of August. I'm actually a bit worried that I won't get any help with my anxiety and depression if I end up with an ASD diagnosis.

anotherswede: I'm getting assessed by a psychologist at the part of Habiliteringen for people with Asperger's and/or ADHD so I guess they're experts. The woman who's assessing me seems quite competent (I quite like her, she's the only psychologist I've met who seems to understand what I'm trying to say and what I'm thinking) and she told me she's also going to consult a/another psychologist specialised in ASD.

MrGrumpy: Not sure what you're referring to when you say my post reflects some of the things you've been saying on this forum so I'm pretty sure it didn't contribute to my anxiety. Anyway, the psychologist told me that we'll have at least two or three sessions if I get diagnosed (possibly more in my case since she knows I don't know how to deal with a potential diagnosis) to discuss the assessment, go through all the papers and results (which we'll do even if I don't get a diagnosis), try to learn how to accept the result of the assessment and also make some sort of "treatment plan".

Is a parent of yours involved in the assessment?
If so and they report autistic behaviour in childhood then you do not need to worry that your diagnosis could be due to that you have been obsessing about it too much and picked up traits by reading about them.

Yes. My parents live quite far from here though (I had to move for university) so the psychologist won't be able to see them in person. She's going to talk to both my parents over the phone next week. One hour with each parent I think.

Last time I saw the psychologist I asked her what's "wrong" with me if it turns out my parents don't have enough information about my childhood or if there isn't enough information pointing towards autism. She said that people who clearly meet the criteria for Asperger's but where the childhood is still a bit "unclear", sometimes get diagnosed with atypical autism. That means I could still end up with an ASD diagnosis even if there isn't enough information about my childhood. That's a good thing if I'm actually on the autism spectrum but less good if it means I'm getting misdiagnosed.

rebbieh - the 'one hour with each parent' is probably mostly about the psychologist's fees - what will they find to talk about for one hour each?

You are clearly aware that any diagnosis (or non-diagnosis) of ASD is, at best, unreliable.

I can assure you it isn't about the psychologist's fees since I don't pay for the assessment. It's, fortunately, free here in Sweden. The hours with each parent is for discussing my childhood and my parents views on it. I know the psychologist has specific questions for them.

Odds are that the psychologist / psychiatrist / whatever probably doesn't care enough to do anything resembling a good job.

Most of them fall into two categories.

You have the types where you have to pay them, like in america.... where they'll pretty much try to prolong everything and drag everything out so they get paid more. Obviously, they don't want you to "get better", because that would mean they don't get paid.

THEN you have the types like the situation you're in... where they're paid a limited amount by the government or similar affiliated institution (the NHS over here in Britain)... and THEY mostly just want to do the minimum amount necessary then shoo you out the door so they don't have to work any more. Obviously, they don't really care whether you "get better" or not.... they just want to get their job out of the way and go home.


The few who do have an interest in your mental wellbeing... exceedingly rare as they are... have their own reasons for doing so.
But personally, if I wanted to talk my problems out with someone.... I'd consider having an actual stake in my mental health to be a higher priority than whether they're actually employed to do something about it.
The lesson to be learnt : Friends are better than Therapists.

... Other lesson to be learnt : therapist is just "the rapist" without less personal space.