Feeling like an imposter/doubting diagnosis

I do still get the feeling sometimes that I only act the way I do now because I have received the diagnosis.  Since my diagnosis, I have had a lot of people say to me "you never used to act autistic, and you're only acting this way because you have had a diagnosis".  To an extent they are correct - though not in the way in which this is expressed.  It is expressed in a way that I am behaving badly because my diagnosis is some kind of green light to behave inappropriately.  What my diagnosis did for me for confirm why I am the way I am and I have accepted as a result that there is a reason why I am good at some thing and not good at others - I have just decided to focus on the things I can do and stop pretending that I can do the things I can't do as it used up lots of energy, stresses me out and leaves me exhausted and doubting myself.

The doubts are still there though and I suppose what is validating for me is that my diagnostic report was able to point to things all the way back to early childhood that I now look back at and think were signs of autism.  In fact, there are lots of things I look back to now that make sense now I am diagnosed.

It also doesn't help that there is a fundamental lack of understanding about adult autism - the attitude of neurotypicals can cause you to doubt yourself.  With my old employer, I had a terrible time pre diagnosis, because the lack of diagnosis was taken as an excuse to completely ignore all the difficulties I was having because I didn't have a piece of paper saying I was autistic.  Due to a reorganisation, I was moved to a job where all my coping strategies didn't work and the staff were very hostile to me and it made me ill.  My boss' unsympathetic response was that I said I couldn't deal with the change, but I had applied for other roles in the organisation and that was a change so I clearly could do change when it suited me.  I was also described as being aloof, thinking that I knew it all and was better than others, being too rules focused and being too honest and straightforward with people and the implication was that it was these behaviours rather than autism that had caused my problems.  The fact that my boss didn't realise that all my flawed character traits were actually signs of autism said it all really.  There is a fundamental lack of understanding and empathy that really does need to be dealt with if people on the Spectrum are to get the understanding and acceptance they need in society.

Hello,

this happened exactly the same for me, I was worried sick that I would not meet the criteria when I went for diagnosis. I did though as they are the experts and know what to look for. In periods of stress I do struggle with everything but can hide it all very well at other times. Best of luck.

dccwal_90 said:

I just wish people would just make the contact that is needed when they say they will.

It’s a frustrating feeling when this doesn’t happen in such high stakes instances like this, that’s for sure.

With regards to previous misdiagnosed conditions, this is something that lead me down the route of an autism diagnosis in the first place. Anxiety disorders, mood disorders and variations of bipolar are all labels that were sort of out my way. Multiple health professionals involved over years, suggesting this diagnosis or that. None of them really fit though and any versions of treatment didn’t work either. I certainly don’t blame any of those people involved, after all it’s a very complex and unique diagnosis. But I now know that it was because autism was the actual reason, not a condition as described above. I found aspects of each fit in different ways, but there was always something missing. None of them explained the burnout I’d experience, none explained my sensory difficulties, my reliance on routine, my occasional inflexible thinking, the way that I’d talk myself out of every potentially risky situation, my very frequent absorption into intense periods of thought or the various social doubts and challenges I face. ASD gave me the answers I have been looking for my whole life. After finding this answer, I’m now starting to see all of the challenges as a strength in the right context (e.g. my attention to detail and tunnel vision when Poseidon are/interested in something).

I genuinely think that vocalising these concerns in my assessment meetings was the best thing for me to do. It was a real life demonstration of the everyday worries that have defined my life up to now.

Yeah I have the same feelings about having to chase things up for all the same reasons. I get so anxious and frustrated about having to do this as an individual in life. I just wish people would just make the contact that is needed when they say they will.  

What you said about having diagnosis of anxiety disorders is very intriguing. This is because I currently have a diagnosis of social anxiety disorder and I am now starting to believe this was a mis-diagnosis as well. This could be a way forward for me in terms of expression my concerns vocally about the process. Using some of the very same questions you have posed. 

Thank you for the best wishes.  

Be careful with masking, if you do it all the time, even at home, because you live with strangers or something like it, you will eventually pay the heaviest price to pay - autistic burnout, it hit me when I was 42, for 2 months I couldn't leave bed, and if I didn't have enough food stockpiled, I would probably starve to death, and it took me 21 more months after that to recover because I had to go back to work full time, you forget a lot when burnout hits you, some of it returns when you recover

overthinking everything is popular among us

but each of us is different

Doubt is a great tool. It keeps us humble. And it helps keep us from danger. I'm a professed doubter. And I'm quite proud of it. It's the gateway to critical thought. 

I think many of us have doubted this. I even thought about it today and recalled being in a group of autistic individuals and didn't have to explain myself. Autism is still being unearthed as another way of thinking, originally simply meaning 'eccentric'. Depending on where you live might shift how it's perceived. Follow the doubt! But externalise it and ask more questions. 

From what I've discovered, NeuroTypical individuals use the term "over-thinking" to mean Rumination without Resolve. So if, by overthinking, you mean you're trapped in a cycle of speculation without looking into the matter deeper, then perhaps, you're an 'over-thinker'. But I've found more often than not, when accused of overthinking, I was simply surrounded by others who weren't thinking very much at all. 

Northern Ireland seems to be far behind even  the worst of other areas

I received my diagnosis at the age of 30. I was quoted a wait of 2 years after the screening, but it was just under 5 when the diagnosis began. In the end I had to chase things up, which caused a huge deal of anxiety (reaching out to the unknown and unsure of what the response would be, worried that I’d come off as demanding etc.)

I too am an over thinker, so can entirely understand where you are coming from. I have spent much of my life feeling like an outsider, someone of the peripheries. Those feelings are still there, but I can’t say I feel like an imposter like I did during the wait for diagnosis. So that’s something at least. 

I think post diagnosis I have more questions than I did before, but I also have more answers or potential answers that I did before too. I certainly know where to look now, after many mis-diagnosis of anxiety disorders etc, which is different to the past.

I was very open about my worries in the diagnosis process. I explained my concerns about ‘what if I’m not given a diagnosis? What next in that instance? What if I don’t present in a certain way, but I do in another? What if I forget something and I comes back to be later, or even worse, after the process entirely?’

By stating this, I was reassured to find that the assessors explained things to me and had encountered others with similar worries. All in all, they were great and very thorough. I just made sure to voice my worries and showcase my inner narrative of concerns as they arose. It was a little unlike me to show an outsider this side of me, but ultimately I think it helped in their diagnosis of me, but also in managing some of my worries.

I wish you all the best of luck.

Oh wow 4 years that's unheard of. I read someone else type they have to wait three years and even that was like blimey I thought my wait was a long one. Yeah I did some research about private diagnosis and it was a non-starter being a mature student. I think I'll be able to do it with 18/19 months as I've gone undiagnosed for 32 years and more people are supporting me these days....so I think what's another 18/19 months. 

I’ve had mainly positive answers back from people, same as you some have said,” I thought you was.” The family ones are often the strangest ones, My sister did the, “ I work with autistic children and your not like them.” That’s because I’m not a child and unfortunately wasn’t diagnosed as a child!

Thats not ideal bit not the worst  wait ive heard of. I was told four years and decided to go private at an eye watering cost. But Id have gone insane waiting that long: 8% of my life already lived yo this point? No thanks.  

Ive had most express no surprise, and one or two say ‘I could have told you that.’ A couple have said they wouldn’t have known other than recognising me as an anxious worrier. NT people dont always see through the veil. But trained experts will. At the very least you can narrow down the specific form of neurodivergence you have, and if its not an outright confirmation, your instincts will hopefully steer you right on how accurate that conclusion is or otherwise 

Hello thank you for the reply. A lady I'm befriending said they might even spot things which help them with their diagnosing that not even you might have noticed or considered. I think I need to try and worry less about conforming or that I'm putting it all on. Your last but one sentence has definitely hit the nail on the head.

Thankfully I am on the list to be assessed but I face a 18/19 month wait. It's disappointing and even though my mental health is ok at the moment I do wonder how I will be a year from now.

Hi. Id have described myself exactly the same way, but my autism was still very discernible to two independent assessors when i got my late in life diagnosis in January. Dont worry about conforming to a stereotype, its tgat interior experience thats most crucial. You wouldnt be here, seeking answers, if you hadnt been missing a crucial puzzle piece for a long time. I hope all goes well with getting more clarity if and when you do seek an assessment. 

I've been referred to my local Integrated Autism Service (IAS) that offer diagnostic assessments so I'm on their waiting list at the moment. This is what I fear could happen after diagnosis that I'm just left to it and I'll have to try and be proactive to make sense of it all. 

Depending on where you go for assessment there may be little to no support after the initial diagnosis. I was able to find someone to work through things and help make sense of everything. In some sense, a diagnosis is just the beginning!

Thank you for sharing your own experience it's very valuable for me. This is going to be quite the learning experience for myself but I have hope if nothing else that a diagnosis for me could also help me in similar ways. 

Hi Martin, I think I could have almost written every word of your post as well somewhere else on here haha. I almost certainly identify with the particular thoughts about not being who people thought I was and I can definitely recall times where I expressed an internal view that I would get found out for trying to act and behave normally. I often used the expression internally that my confidence was a result of me just putting on a performance and faking it to make it and when I had to go outside I would say time to put on a performance just so I could function and mask how anxious it was all making me.

I'm in the process of coming terms with the likelihood that for large parts of my 32 years to date I was masking for a lot of it.  I have done really well to somehow find a way to get through the 32 years of my life to date.  

Hi! Basically I read that post and I could have written every word of it, myself, though I was diagnosed last week. Long before I realised I was autistic, I was suffering from imposter syndrome, always worried at work that I wasn't really good enough, that I wasn't who people thought I was, and that I would get 'found out'. I now look back and think that was likely part of being autistic, and was a consequence of masking.

A diagnosis has given me permission to be myself. I'm also learning a lot about myself and how much of a perfectionist I am, how I perceive myself and what goes on when I'm interacting with others and engaging with my own thoughts. And so now what I can do to make things a bit easier going forward.  Such as what I need to bother about and what doesn't matter. I've been holding myself to neurotypical standards,  even after my diagnosis but I'm not neurotypical. It's very much work in progress and probably will be for a long time. 

I'm trying to say this is how a diagnosis has helped me as someone who masks heavily and would be considered "high functioning"