Self Doubt Before Diagnosis

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Ok so something is definitely up with me and I can't quite put my finger on it (so to speak). I relate to a lot of things to do with the spectrum and am currently obsessed about it! But every single time I'm obsessed with it and convinced I have it, self doubt always sets in eventually...

What if I don't have it and am making a big deal of nothing?

What if it's something completely different that - God forbid - has a worse image than ASD/ADD/ADHD?

What if I go into my appointment and they say I don't have it, but continue feeling like nobody gets me?

What if I do get the diagnosis but feel like a fraud because I'm doubting myself now?

What if they give me medication that is meant to change me (scary!)?

What if what if what if...

Anyone else feel/felt like it.

Waiting for a diagnostic appointment is painful.

I understand. I think the same, except I am still trying to find someone who could possibly diagnose me where I live.

With that said, I think that those on the spectrum are so used to questioning everything, that they might know in their hearts that is what it is, but continuously look what if's. I have seen so many that self-diagnose and later go and get diagnosed with AS, so I have a feeling that most are self-diagnosing correctly.

Good luck!

While you are waiting for replies on this thread, I think you might find this 2014 thread interesting in the range of comments on the same topic:

viewtopic.php?t=254618

You will see that one poster there quotes Tony Attwood (a psychologist who lives in Australia now and specialises in Aspergers Syndrome). He has written a number of books and articles and there are video interviews with him widely available on the internet. A book which WP members often recommend to newcomers is one of his:

"The Complete Guide to Aspergers Syndrome". Maybe check it out too?

Good luck with your assessment, though even if it doesn't go well, remember that clinicians are only human and not infallible. One opinion is only one opinion at the end of the day. Sometimes clinicians too see things/symptoms so much in black and white that they miss the shades of grey - so people can get misdiagnosed or missed diagnosis. We are all individuals and not clones of one another just because we are on the spectrum.

I had the exact same thoughts perpetually chasing each other around my head before I was diagnosed, indeed, it was those thoughts which led me to get my diagnosis; I was tired of feeling "stuck in limbo" with one foot in the autistic world and one foot in the NT world. Now that I know exactly where I fit, I feel much better.

Generally speaking, you don't have to worry about the meds. No one can force you to take anything you don't want to, and there are no meds for curing ASD's anyway. The most someone might suggest would be an anxiolytic or an antidepressant if you have those comorbid conditions, but other than that, you don't have to worry too much about the drug front.

I'd be surprised if you felt like a fraud after receiving the diagnosis. I felt like one pretty frequently before mine, but the professional mark on paper really helps validate my feelings of "different-ness". If you're really concerned by this though, if you can afford it, there's nothing wrong with seekig out a second opinion.

When I read all your 'What If' questions, you reminded me of myself -- about almost everything. I can get a bit crazy with the flood of worries generated by an unknown situation. The best thing that helps me is to do something completely different, involved, and takes a lot of concentration -- this takes my mind off an impending unknown situation. I am very worried about a trip I have scheduled next summer. I will worry myself sick if I don't do things to keep my mind busy. I do still fall into the worry pit when I can't get my mind to focus on something, but it is temporary. I have favorite activities that help: sunny days I work in my yard, rainy days/night time I clean, organize, read, go through my computer stuff, video games, .... Stressed over something that is out of your control is tough. I hope you can find a calm place soon.

Thank you for sharing this. Yes, I've had every worry you mention. No diagnosis as of yet, not certain I'll chase it.

I guess a lot of the doubt comes from the diagnostic criteria being very vague and a having to do with degrees of problems, which is hard to measure yourself.

I use a trick I learned from chess: think about the next step. As in intentionally and calculatingly, not just giving in to worries. Weighing probability and possible actions helps me deal with anxiety. Sometimes no matter what the first move is, the second move is the same.

I am almost more scared of getting a diagnosis than not. However, if I were to be tested, and they found that I didn't have it, I'd still be reading WP, because it is here I've found solutions to my problems. I see positive changes already, particularly because I started understanding how others see me.

Remember that you are you no matter what people tell you, and that every person has right to respect.

From my clippings there is this fascinating opinion piece, author not known, about the pitfalls of diagnosis and the way that women and girls might experience 'diagnostic gaslighting': (sorry I had to take all paragraphs out to defeat Captcha)
"For many women who recognize themselves within the folds of female Autism later in life, the process of seeking understanding and validation in the form of a diagnosis from a professional, often leads to yet another round of gas-lighting. If a woman expresses the capacity to recognize and understand that she may be Autistic, she’s then told by professionals, that she’s too self-aware to be on the Autism Spectrum and is summarily dismissed. If a woman expresses feeling that she may have been let down by others or betrayed by a society that only values certain ways of being, she is told by professionals, that she has a persecution complex and is summarily dismissed. If a woman expresses the capacity to feel love, empathy or even hints at the potential for having a sense of humor, she’s told by professionals, that she can’t be on the Autism Spectrum as Autistic people (according to some) lack the ability to feel any of these things. If a woman’s married, in a relationship or has children, she’s told by professionals, that she can’t be on the Autism Spectrum as she obviously has both the capacity to maintain a relationship and care for others. Autistic women (supposedly) cannot do this. If a woman is single, reclusive and/or unemployed, she’s told by professionals, that she’s suffering from depression and that all of her other issues will go away once she begins medication and starts getting out more. And worst of all, if a woman is educated, articulate and well-informed about Female Autism and why she feels she belongs within it, she’s often told by professionals that she’s making things up about herself in order to gain attention and is instead diagnosed as having either a Personality Disorder or Bi-Polar Disorder."

The tendency of those within the psychological profession to constantly deny the validity of an Autistic woman’s understandings of herself by instead reinterpreting and reinventing her words as evidence that she is too self-aware to be on the Autism spectrum, is in itself, the ultimate form of Gas lighting.

As someone who was recently diagnosed, I can relate exactly to those feelings. I couldn't have worded it better myself. I was diagnosed three weeks ago, and I'd been looking into it a lot over the three months before that. My mind constantly switched between "there's no way I don't have Aspergers/HFA" to "there's no way I 'do' have Aspergers/HFA". It was a little odd. Every single one of your worries I also had, so I'd say that it's completely normal for someone who's looking for a diagnosis. Even after being diagnosed I continued to feel like that: "do I 'really' have it though?". It's been three weeks now, so I've stopped worrying about it for the most part, and I can confidently say that I'm happy with the diagnosis and no longer have doubts about it.

I'm sure that over the weeks after your assessment you'll come to accept whatever the assessment/diagnostic results were. I wouldn't concern yourself too much about it, but I know that's much easier said than done.

I'm here now because of this. I know that I have the experiences in my life that I constantly blame myself for. I'm 28 and realize that I'm not where I should be. It took me a long time of denial then searching before I arrived at this possibility. I read many things about how Asperger's goes under diagnosed in women and for the first time in my life I realized maybe, just maybe, this is it.

I'm currently in a battle with my psychologist over this. When I mentioned my symptoms, she said that I'm only depressed.She has only increased my anxiety. I remember I had a panic one night and my sleep schedule has been off lately because I stay up worrying about the "What if." So, I tracked down people that I believe can help me better than she has and can.

I feel comfort in this and I feel sure that this is a possibility. BUT I do have the running thoughts of doubt going through my mind. Just what if I'm wrong? What will I do if I'm wrong? I feel like my problems won't be resolved and none of my questions will be answered.

On my own, I've been doing little things. I've been seeking ways to improve myself. There are free resources like job skills labs and social skills sites. The only problem, however, is that they don't address that little something about me that I know is different. That thing that's so hard to pinpoint. I also don't feel as sad and hopeless as I did before. Maybe this is just a start to finding another answer to where I fit into this world.

I thank you for for reading... This has been bothering me. And anytime I ask google a question, seeking a voice similar to mine, I wind up here. I hope someone will understand.

To the thread author, thank you for this post. I'm happy that I'm not the only one. I hope that you can find comfort in not being alone in this as well.

Welcome. I am glad that you have arrived and plenty of women here - and some men too - will understand what you are saying and where you are coming from.

I can totally relate to your post, I to did the exact same thing (and still do).

I had to wait about 3 months to get my final diagnosis and I totally understand how you feel, it is totally normal to feel those things and i appreciate your post as it makes me feel better about my worries too.

I got diagnosed a week ago and I still think have I got it or not, can she be right?...

my advise is to try and forget about it as best you can until the time comes for your assessment. Things will work out in the end

It is worth the wait to know that you belong somewhere! for 33 years I thought I was crazy and felt so isolated and with the help of my family and the lovely people on here I FINALLY feel as tho I belong (cheesy I know but true lol)

All the best and take it easy
Matt

Thank you everyone for your posts - it has really helped.

Fraljmir I too go between "Yep I definitely have it!" To "nope I definitely can't have it." I've been obsessed with psychology for years on and off always thinking I had OCD as a child and social anxiety until I actually decided to work up the courage to talk to someone about it. I was on a mental illness website, pouring my heart out at how lost I felt (I had suspicions that either there was something up with me or my parents were horrible - haha what a long way I've come) when someone said "I see myself in your words - I have Aspergers and you might too." They instructed me to look up ASD symptoms in women which I did. Tick tick tick - it all sounded like me growing up. But I still doubt. There is so much that can appear to be ASD and the more I research the more I see this. I've been told it's trauma or anxiety but then feel completely lost in this appraisal.

I've been told my intense interests or obsessions aren't particular enough in focus to be ASD (I tend to have a few obsessions within a few year period that go from interest 1 to 2 to 3 - 1 to 2 to 3 again etc). I've been told that maybe it's just SAD or trauma from a cold and critical mother (which I think is a harsh representation). I think I'm confused and have confused others. What still remains is this sense that I just don't "get" it. I feel lost in social situations - not because I'm scared but because I just don't know how. I'm also scared of being myself because I know I'll get myself into trouble by saying the wrong thing, but I'm told that it's just SAD so who knows what I'll be talked into doing only to find out that maybe there is more going on...

My interest in this is waning but I know it will return with a vengeance in a few months. I'm on that waiting list to see an ASD psych and hope this brings answers. For the time being I want to pay attention to myself and be observant in the hope that the answers reveal themselves to me. Whatever the results I feel at home here - even if I don't have ASD I really relate to many of you and will probably stick around .

I can relate to this very much. I always switch from thinking "I should have it!" to "There's no way I do."
But reading everyone's replies in this thread, it makes me feel very relieved and validated.

It's as if the more you describe your situation, the more I think you're describing my situation, you even type very similar to how I do, using quotations, brackets and dashes haha. All of the information in those paragraphs I can relate to almost 100%, I also have interests that spontaneously switch, usually one interest over the period of 3-4 months changes, and they tend to go back and forward. It's quite frustrating not being able to 'control' what I find interesting, because it causes a huge problem with keeping motivation, which is the main thing I'm still seeing my psychologist for. As for feeling confused and feeling like you're confusing others, again, I relate to this entirely. I never know if I've made my point clearly, and I usually feel the need to readdress the issue until I'm certain that we're on the same page, and sometimes people even find that frustrating because I'm "bringing up old issues". Feeling afraid of acting like yourself due to getting in trouble for saying the wrong thing- yet again, another thing that could easily be used to describe myself (I don't see this as too much of an issue though, because personally I prefer to be by myself most of the time).

It's interesting that you say your interest in this topic is waning, because I too have moments where I know one of my obsessive interests is coming to an end. Infact, I was having one of these moments just over a month ago when I was looking to get my diagnosis. I knew that if I didn't go at it at that moment, that I'd lose interest and that would be the end of it. I'm glad that I decided to use that last bit of motivation to seek a diagnosis. I hope you're able to get your diagnosis before you lose interest in the topic.

Anyway, I hope your diagnosis goes well and it's good to hear that you'll (most likely) be sticking around.

I'm so glad this thread was started. I'm just past the GP referral stage in my quest for diagnosis. My view lurches from 'That's so me' to 'I'm not like that'

I almost feel guilty that I might be wasting people's time. Am I taking away resources that could be helping some young person with difficulties at school or getting a job.

When I go to my referral next Tuesday I'll probably start by apologizing for being there.

I know there's something different about me. I want to be sure what it is.