Trying to figure out if I might be on the spectrum

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Hello, everyone!
Nice to meet you.
This is going to be a very long post, but I don’t really know where else I can express all those thoughts that have been working in my mind for the last few months and prevented me from focusing on anything else. (Also, I apologize for my mistakes, because I'm not a native speaker.)

I’m one of those people who think that they might have Asperger but aren’t sure about it. I’m an adult woman (at least according to my age) and have many troubles in daily life because of my Asperger-like traits and I would like to get tested but it’s really difficult to actually find a doctor for a diagnosis in that field.
I don’t know what to believe anymore. I have many symptoms that seem to indicate Asperger but at the same time other traits don’t seem so fitting.

I know that I’ve always been different in some ways. When I was around one and a half/ two years old I didn’t play at all. But I wasn’t lining things up either (which would be normal for autism, I guess), I was just sitting around staring at the pages of picture books, catalogues and TV screens for hours (apparently, I was drawn to watching TV way before it should have been possible to actually see something on a TV screen due to the natural brain development of an infant). When the diet changed from eating just mush to solid food, I stopped eating. My mother had to experiment with a lot of food to find things I would eat because she was afraid that I would be starving myself. Till today there are many, many things I can not eat due to either taste or texture. Also, I have a very weird routine with how I eat things. Every kind of food or meal I have has a certain way and order in how I eat it. (That’s why I prefer eating alone. If I have to eat in the presence of others and force myself to do it a “normal” way, it stresses me out and doesn’t really feel like I have actually eaten anything at all. Afterwards, when I’m alone again I have to eat at least a little bit in my usual way, in order to feel at ease again.)

I have a huge problem breaking rules and regulations. When I was a child and me and my siblings were told not to open the freezer, I would stay hungry for hours instead of disobeying and getting something to eat.
I always used to have a few friends, but at the same time I was always kind of an outsider among them. I can interact with others and I believe that I can read emotions to some extent, but there was always something missing. Something I didn’t understand. As a child, my group of friends always treated me like I was somewhat dumber and more clueless than them – even though intellectually, my marks were always higher than theirs. My way of thinking was just different than theirs. And I felt more naïve and “slower”. It got worse when I was in middle school and puberty started for everyone. It became harder and harder to connect with anyone as their interests and the way they communicated changed and mine didn’t.

I have to plan out everything and if anything in my plan for the day changes I can have an internal breakdown. I hate surprises and I can’t do anything spontaneously.
I have trouble understanding jokes and irony if it’s uttered by someone who I don’t know really well. (Otherwise, strangely enough, I actually love sarcasm, metaphors and so on. I love to analyze it in fictional stories and I use it myself. That’s one of the things that don’t really fit with autism, I guess.)
I have certain mannerisms, that I repeat constantly, especially fidgeting with my fingers and hands and playing around with small objects. I do it almost all the time, not just when I’m in a social and/or stressful situation, but when I’m alone as well.
I overthink everything and I just can not stop thinking (it’s one of the reasons why I have sleeping problems since I was a little child. Another reason is that I’m very sensitive to light and noises. Learning to sleep with earplugs at least helped with one of those problems. Earplugs are like my best friends now. Without them I probably wouldn’t have been able to successfully study for and write my exams as I get distracted by everything I hear.). My thoughts often go in circles and sometimes I have sentences that repeat itself over and over in my head with a certain rhythm. Even though I’m pretty sure I’m very analytical, logical and able to compromise, I tend to have a black-and-white mentality at least when it comes to emotions. When something out of plan (and potentially bad) happens, it’s immediately like the end of the world and I can’t focus on anything else until that problem is solved. I also have trouble with identifying my own emotions and verbalizing them.
My emotions sometimes seem very sudden and extreme (almost like I was still in adolescence).

I can socialize somewhat, but it’s very exhausting – especially if it’s in a group. I prefer to only meet with one person at a time. And even though I’m grateful that I have one good friend, I’m fine with only meeting her once a month or even less (depending on work schedule). And I’m not interested in romantic relationships. I tried to date a few times, but it always seemed too much trouble and too exhausting. Besides, I don’t like being touched anyway. A handshake is fine, but I even hate to hug my friends or family members. I’m often overwhelmed if many things are going on at the same time. Because of that, for example learning how to drive was a very hard task.
According to my mother, even many traits that I don’t consciously realize might be typical for Asperger, because she often tells me that X thing I do is exactly like the stories her colleagues tell about their children who are diagnosed with Asperger and Autism.
I know that I often come off as self-centered and narcissistic without meaning to. When I am with my family or my best friend, I’m very blunt and honest, but they know that I don’t mean it in an insulting way and my friend takes it with humor. But when I’m with other people I’m overly quiet, polite and careful. I guess, it’s because I never know what I actually can say and what would be appropriate, so I say nothing at all or just very carefully constructed, polite things. And if I do say something without having had the time to think about it, it’s very often wrong and unfitting.

I tend to obsess over things. Mostly it’s fictional stories and fictional characters. If I were to be diagnosed with autism, that could be called my special interest. It relieves my stress, puts me at ease, makes me loose myself in it and unfortunately often keeps me from doing the things I actually should be doing – which is a huge reason for feeling constantly guilty. Normally I have one story or one character that I focus on for weeks, months or years. Every day I read about it for hours, have to know everything about it, watch videos about it over and over and over again. I analyze facial expressions, possible thoughts, emotions, plots, relationships, read fanfictions and use my (through those analyzes gained) knowledge and understanding to create own stories and fanfictions that replicate this character to a T. However, the fact that the objects of my interest have to do with fictional characters, emotions and relationships makes me doubt that I am autistic, since those interests don’t seem to be normal. Especially not since I even tend to identify with those characters. And when it comes to fictional characters, I have very good understanding of the way they are thinking, guessing their intentions, and anticipating their behavior. On the other hand, I realized that most things which have to do with fiction follow certain patterns, formulas and rules. So maybe my understanding comes from understanding those “formulas”?

Another thing that might be a contradiction to autism is the fact that I find it difficult to tidy up. Like really difficult! Almost like it’s physically impossible to do sometimes. Funnily enough, this is contradicting with my own needs as well, because on the one hand, I quickly become overwhelmed if my mess becomes too big but on the other hand I can’t seem to get my s**t together and start doing something against it.
Another contradiction is the fact that as a child I really did play with dolls and engaged in role play (and even though I don’t exactly remember much from when I was very little, I think that I didn’t just pretend to like it but really did like it). For me it was like I was playing a story. And stories have always been the thing that interested me the most. I had always stories in my head and everything was connected to a story.

So, yeah… I really wished I could find out, what’s wrong with me. If I were to be diagnosed with autism, it would actually relieve me from many feelings of guilt, since I struggle with a lot of everyday stuff and my own job and right now all I do is blaming myself. And if I wasn’t, maybe they could still tell me, what could be the reason for my strange behavior and thinking patterns, so that I could get help and work on it. But in the area where I live, there is only one clinic that actually diagnoses autism in adults and they only accept patients who have been diagnosed beforehand by a psychiatrist. So, I tried to get an appointment for a psychiatrist, but the ones I called either don’t accept new patients right now or say that they are not focused on autism and can’t make a diagnosis.

This forum looks like a nice place. And even if I don’t know if I’m on the spectrum, I can relate to many things people are talking about on here.

Welcome to Wrong Planet!

I don't know if you wanted people to comment on the traits that you mentioned, but the part where you mentioned having difficulty being able to clean things up sounds a lot like executive dysfunction. I'm not sure if all autistics have it, but it's definitely a very common autistic thing.

Keep in mind that no person with autism has all of the autistic traits. A lot of autistics might not be interested in playing pretend, but a lot more might be, and there's nothing wrong with that. Every autistic person is different, and we're all equally valid.

Thank you for your answer!

I didn’t know that having difficulty with cleaning things up was a trait that other autistic people shared as well. For years, the only things I knew about Asperger and Autism were those huge typical stereotypes. So I always thought about those pictures where everything is perfectly tidy and sorted by color etc. Which is really not how my living and working space looks like. The only thing I actually do sort and categorize with care are the stories I read and saved on my PC and kindle (so basically the things that are most important to me, even though it would be far more important to categorize and tidy up my other stuff – especially the work related ones). Ironically, since I was a teenager, I clean my grandmother’s apartment since she is physically unable to do so herself. For some reason I can do that without a problem. It’s once a week, always at the same day and usually on the same time. It’s a bit of a ritual to do so (and also, I just have to clean it, not tidy up). It’s so strange.

Thank you for your nice words. They are really helping, while I try to figure out what’s happening with me. It’s really difficult right now. I feel like I’m failing at the job that I studied for so many years, because of my problems (the job requires a high amount of social interactions and social skills) and I’m always torn apart between trying to focus on still somehow managing to do my work (badly) and my mind constantly analyzing and trying to figure out what’s wrong with me.

Welcome to Wrong Planet!

Welcome.

You make me doubt my diagnosis because you sound more autistic than I am - and I am diagnosed with Asperger.
You share a lot of traits with me and have some I lack.

For example the planning and being unable to do anything spontaneously. I gave up on planning a long time ago because it only makes me more anxious since I know I can't predict everything and my reaction to change of plans is way worse than my improvising which is actually quite good when I keep anxiety on hold. Planning is mentally exhausting and I often still have to improvise in the end because I just can't stay focused/am too curious/can't control time and I for example end up missing buses, going to different bus stop by some "brilliant" idea of catching it and suddenly ending in unknown city because the bus I found there was going opposite way, lol. Where I have a choice - meltdown and be stuck there till I manage to calm down or get hold on myself and focus on figuring out how to get back home.

And I don't really mind mess. I suck at tidying up but unlike you my Achilles heel is cleaning - I can somehow declutter/organize my room if I focus on one part/task at a time, ignoring the overwhelming "too much of everything" feeling I get when looking at the room as whole but I will often leave cleaning(sweeping, wiping, vacuuming) to my mom because I find those tasks pointless and waste of time and energy - I can't see much difference between clean room and not clean room - I will clean the floor or desk if it gets dirty but what is the point in cleaning some dust on shelves I can't even see unless I actually use a rag on it? Not to mention I hate the sound of vacuum cleaner.

OK. Enough or I will go on forever.

I think you have a decent chance of getting diagnosed when you find a doctor.
Nothing you said dismisses the probability of you being in the spectrum and you do seem to have a lot of autistic traits.

Hi, I was just diagnosed at 40 and you sound very similar to me in many ways. I have a huge imagination and love for science fiction, but when it comes to dealing with actual humans that is where the problems come up. I played imaginary games with toys doing storylines from the books I loved. I also write stories. It's dealing with people and change that throw me, and I definitely do not lack imagination.

Thank you for all your answers!

@ Kiriae
This whole thing is so very confusing. After all my research, I know that I show many Asperger traits and so many things about me that just are different would be able to be explained by it. But at the same time my former psychologist (who I visited because I had depression for years) almost laughed at me when I brought the suggestion at one of my last visits because I don’t come off as autistic in an “one on one” conversation and faces are not like a “blank piece of paper” to me. And that’s actually not even wrong. I did this reading-emotions-through-eyes test on the internet a few days ago and my results were pretty “good” and I could recognize most emotions. But on the other hand, I took rather long for almost every face and analyzed every detail carefully, so I’m not sure if my correct answers really were because of intuition or because I simply used my (until now almost internalized) knowledge of faces and emotions that I gathered from watching my favorite fictional characters over and over again.
So, I don't know what to believe. Strangely enough, every other Aspie-test I did on the internet always told me that I'm very likely to have Asperger. But I don't know how believable such online tests are, so...
It's kind of frustrating. I just want to know what’s wrong with me so that I can better learn how to deal with it and maybe find an occupation that fits better to my needs and abilities as the one I’m doing badly with and suffering from now. My psychologist used to say that everything stems from troubles in the mother-child-relationship…. Which is not only pretty cheap but doesn’t even explain a fracture of my problems and also doesn’t make sense because when I lived away from my parents for a few years during university, everything actually got worse instead of better because I horribly struggled to deal with “normal” everyday things and felt overwhelmed by small “normal” responsibilities to the point that I almost shut down completely and locked myself away in my room with heavy depression.

For some reason, I love the sound of the vacuum cleaner. I don’t know why, but it relaxes me. What I can’t deal with is the sound of birds twittering. It gives me horrible headaches. This, along with the strong sunlight and the heat make spring and summer my most hated seasons.
And I guess, I’ve I wouldn’t have to tidy up before I can vacuum my room, my surroundings would be at least somewhat cleaner. But it’s having to get order in my huge piles of mess, that’s what is overstraining me. My mother told me that as a small child I would start to cry when I was told to tidy up my messy room and when I was in kindergarten, I allegedly refused to tidy up stuff from the playing corners because I didn’t think it was fair to have to tidy things up that other children had played with. So, in the end, I sat at the drawing table for the most part of the morning, because there I only had to put away exactly those crayons that I had painted with.
But yeah… dusting is totally unnecessary. I only do it twice a year, when we have big family events and the house is full of people.

@ puzzledoll
Yes, I also have problems with people (especially if it’s more than one person at the same time and someone I don’t know really well). And changes are pretty horrible and I struggle so much with them.

You want to know what's "wrong with" you, but if you have Asperger's then nothing is wrong with you. Something is just different about you. Being a minority is not the same as being wrong. We are only told something is wrong with us because the people without Asperger's are the majority. You sound just like a woman with Asperger's to me. It presents differently in women. My therapist of 10 years swore there was no way I had Asperger's. I went to an autism specialist and was given a whole day of testing for everything, and it ends up I have Asperger's. We have just learned to hide it to seem normal and avoid conflict. Looking back through my old SAT (a standardized test given in the U.S. to school children several times throughout their lives) results, I see superior language and analytical skills, but terrible listening comprehension. My old report cards complain of illegible handwriting. I was non-verbal. I had no friends. All of the signs were there. If you suspect you have it, you probably do. We all kind of know. My doctor tried to blame my condition on childhood trauma and bad parental relationships. Childhood trauma does not explain why I think literally and why I categorize things in my head and why I don't understand people despite being exposed to them for 42 years. You sound to me like you have Asperger's. I would bet money on it. Maybe you could go to a doctor in another city if there is not one available near you who is taking new patients.

One psychologist opinion doesn't mean much. I visited 6 psychologists and 3 psychiatrists (starting from age 3, when psychiatrist said "High intelligence, normal motor development, delayed social development... - but she is smart so she will learn it soon") before I finally got diagnosed at age 25. And even then a psychologist I was seeing for 2 years wrote in her opinion I just have "immature personality" although I said I am undergoing diagnosis for Asperger.
And my current psychiatrist (5th, I go to her because I hate the medical centre in my city due to sensory overload so I can't go to the 3rd that diagnosed me) totally ignores the fact I already have "ASD level 1 disability prove"(she refused to even look at it) and tries to cure me for depression/anxiety. She was even refusing for a half of year to give me an opinion for disability pension because she said "Noone will give you a pension for this, people have worse problems" and then she was totally surprised when I finally shown her a document saying I will actually be getting a disability pension for next 3 years(could be longer, they set the date when my disability prove is ending - and I will probably be able to prelong it when I prelong the disability prove).


Birds don't bother me much unless there is a lot of them.The sound of TV downstairs is worse. And I just can't stand my parents talking there - I can't focus on my computer when they do even if I close the door and use ear defenders.
And I love summer because it is hot and sunny. I dislike cold and cloudy/rainy weather unless a thunderstorm is there.

As for tidying up when I were a child - I would also get angry when parents tell me to clean my room (I still do, actually) but as I recall now I always had a thing for organizing mess. The second thing I did upon entering kindergarden(first one was pushing other kids, one by one apparently unaware they are kids not dolls, lol) was going straight to the shelves, throwing all toys off, making a huge pile of them and... organizing/putting them away my way. LOL
I always did the same way when I was tidying up my room as a kid - everything was getting off the shelves to a huge pile in the middle of the room and then organized. I had to make even bigger mess in order to clean up.
Even my Legos were organized by colors and shapes - I had as much fun making single color towers from them as I had playing.

I can't do it anymore though because most of my mess are clean/dirty clothes and a lot of garbage, not toys so throwing everything together doesn't make sense. I just walk around the room with a garbage bag, then a laundry bag to collect all clothes I remember are dirty, then I collect all leftover clothes on bed and put them to closets or the laundry bag - by smell. LOL
Sometimes I will still use the "huge pile" method - when I refurnish my room. It's also the only time when I see a point in sweeping/vacuuming/wiping - everything but the middle of the floor is empty so why not clean it while I have a chance?

Oh, and BTW.

I loved cleaning other kids rooms(my own was a chore). All the toys I never played with before! In front of me! I could see them, touch them, learn how they work then out them away and grab another interesting toy, and one more!
Putting away toys other kids in elementary played with was also sort of fun - I could figure out how they played with them. Because normally I wouldn't play with other kids - I spent most of my kindergarden time talking with the caregiver.

I hated the cleaning duty at school though. I was always slow to put all my books into bag when we had to leave the classroom because I could never recognize the signs the lesson is about to end and being on the duty only added to me being the last one leaving the room. I also had enough trouble paying attention to what teacher says to recognize that I am supposed to not only write everything down etc. but also know when to wipe the board and bring chalk. At times I didn't even know I am on duty till like 3rd day (duty changed weekly) because my partner (there was always one boy and one girl on duty) whoever it was was always faster to recognize the signs and the board was clean before I realized that "Whoever is on duty is not doing their job" from the teacher was aimed towards me and meant I was supposed do something.

The most important thing to remember is that autism/ Asperger's is a spectrum disorder, so some people will be more severely affected than others. I only learned about what autism is about five years ago, but from the moment I did I knew I had it. It was a perfect description of the way that I experience life, and of the difficulties I have.

However the last five years have been filled with inner conflict and self doubt, perpetuated by people around me telling me that I couldn't possibly be autistic. I began to think that I was stupid and naive for even considering the fact that I may have autism. But no matter how many people told me I'm not autistic, it didn't take away my ability to see that I *am* different from other people. I was filled with so much guilt and shame that I couldn't measure up to the standards of neurotypicals that it became overwhelming.

Finally, last November I decided to get tested. I had to pluck up all the courage I had to self refer myself to my local autism service. Some people around me were supportive and said it's best to know one way or the other, others were sceptical and didn't see the point in me trying to get diagnosed. It's been a long process, and for most of it I was scared that the fact that I don't fit all autism traits would overshadow those traits that I do have. But today was the day that I got my diagnosis of high functioning autism, and I couldn't be more relieved that someone has finally taken me serious, and that I finally have my answer.

My advise is that it doesn't hurt to get tested. If you do have Asperger's, there is help and support you can access with a diagnosis. If you don't, well, at least you know, and you can look into other things for an answer

I’m sorry for not replying earlier. My life is very stressful and exhausting right now and I barely have time for anything, so when I do have a little bit time for myself, I’m too tired to engage in any kind of social interaction – and even if it’s just on the internet.

@pasty
Yes, it’s the same with my therapist. She said, there is no way that I might have Asperger. That again made me question myself. But well, I don’t think she is an expert, so I’m trying to get tested elsewhere.

@Kiriae
It’s really interesting how many people are misdiagnosed at first.
It’s strange that your disability pension only lasts for three years and you have to prelong the disability prove. I mean, it’s not like you are going to be “cured” from Asperger after those three years.

Yes, the sound of my family members talking can be terribly annoying. However, the worst thing for me is that my mother and sister have a habit of walking very loudly. I always hear them stomping around, even when I’m on a different floor. But for some reason, I’m fine rain and thunderstorms. I mean, I don’t like the noise, but as long as I’m inside, it’s ok. But I hate New Year’s Eve since I can remember. As a child I would cry every time and no head phones or ear plugs would held. Now, it doesn’t make me have a breakdown anymore, but the noise is still very uncomfortable and the “pretty lights” really don’t make up for it. Every year I would prefer to stay inside.

@amshep95
Yes, you are right. Getting tested would be the best thing to do, no matter what the end result might be. Right now I’m very much obsessing over the question of whether I’m autistic or not (it almost replaces my usual obsessions with fictional stories and characters) and I’m spending far too much time on researching, contemplating, hoping and doubting which is using up too much of the bit of strength that I have left (as I feel that I’m starting to have symptoms of depression again, due to my current life situation).

I can understand your selfdoubt after having people tell you that you can’t be autistic. The few people that I told about me wanting to get tested reacted rather mixed. While my mother is very encouraging, my friends don’t think that I might be on the spectrum. On the one hand, they would acknowledge, that I’m somewhat different, but on the other hand they would say that I’m not THAT different and most of my symptoms are things that some “normal” people might do as well.

I've had similar responses with people telling me that what I describe my difficulties as being, they have problems with as well. The important thing to remember is that autism traits are not unique to autism, but because of how our brains work, they impact us so much more - that's why diagnostic definitions of autism talk about these difficulties being persistent and impairing our ability to function in the way a neurotypical person would, e.g. with socialising.

On hindsight after my diagnosis, I've realised that no matter what anyone's opinion is on whether you're on the spectrum or not, only a professional who specialises in autism spectrum conditions can truly give you an answer. Family and friends can have their opinions, and they can have as many opinions as they like, but they're not the ones who have studied ASDs for many years and who have undergone special training to be eligible to diagnose ASDs. So please don't let them stop you from seeking a diagnosis!

Asperger alone is not a condition so severe it prevents anybody from working and in Poland you only get the disability pension if you are "unable to work at your current psychophysical state". I wouldn't get the pension if I didn't also have the depression and anxiety making me cry every time I see a job offer. If in 3 years I won't be that depressed anymore they won't prolong it (although I will probably get depressed and anxious again as soon as they take it away because it gives me a sense of safety and then they will be forced to give it back, lol). And they surely won't prolong it if I will be working at that time (but will give it back if I get depressed again after losing the job).

They are known of not prolonging the pension for people without arms or legs - as long as the person managed to accept their condition (therefore depression no longer present) and have what it takes to find and hold a job(you can work without legs, you just need to find a right workplace - and the company gets money for keeping a disabled person employed - up to 130% of minimal wage - so they won't fire you easily).

You can also work while on the pension and it's actually encouraged. The pension is paid in full as long as your wage is no more than 70% average wage, which is quite a lot and if you excess it you can either put disability pension "on hold" till you start earning less or return the money(they send you a reminding mail when thet happens).

The pension is supposed to help you live through the hard times and become independent again in the future, not make you live off the government benefits forever.

And the disability prove can also change with time - there are 3 levels of disability. I have level 1, but I got it when my condition was better (I was still at school, living a predictable life so I wasn't that depressed and anxious) and the disability pension I got currently equals to prove at least level 2. People of level 1 don't get the pension unless they condition worsens.
Also the prove doesn't equal diagnosis. Some people with Asperger don't even have disability level 1 because they deal with life well enough.

Thank you for the info. That’s very interesting!
Yes, it makes sense that having Asperger is not enough to get a disability pension since there are many people on the spectrum who seem to have no problem with earning money and so on.
But I think, the conditions of these disability pensions sound pretty fair, so it does seem like a good system.
I’m not sure if we have something comparable where I come from. Right now, I’m working and earning money but I’m not sure how long I will be able to do so, if my depression becomes worse and/or I’m failing my next tests again due to my anxiety and social problems.