I don't know who I am, help!

[purplecloud]

Hi, I'm a 20 year old girl. I am waiting for an ASD assessment, but I am terrified and confused. The thing is I grew up having a cousin with Aspergers and I for sure know my oldest uncle have it too, because he is a textbook case. I really think my father has something as well, probably ADD, but he does have some aspie traits too. I never related to my cousin or my oldest uncle though, but I know people are different.

Anyway, this whole assessment thing took off several weeks ago since my current therapist started suspecting I might be on the spectrum. I had thoughts about ASD a bit before that, but I brushed if off until she decided to get me on a waiting list for an assessment (with my consent of course). After that I literally became obsessed with the thought of possible ASD and I seriously can't stop thinking about. It's kind of driving me nuts...

The thing is I had a pretty happy childhood, at least up until I was 12. I was a happy and easy kid with a really idealistic world wiew. I do wanna share some things about my childhood though:

- I learned to walk an talk at a typical age, even slightly early. I skipped the crawling stage though and scooted on my bum instead. Well, I did crawl a little after I started walking.

- I was very shy and around people I didn't know. I barely talked for a while in kindergarten, but one day when we were having ice cream, we got to choose which one we wanted and I said out loud "I want x". This chocked my teachers and they were so excited to tell my mom when she picked me up.

- I went to three different kindergartens as a child, or, the first two were just temporary. At the first one (when I was about 1 years old) I apparently made up this "game" where I would run back and forth over and over again saying "Majaaaa!" (there was a girl there called Maja). I don't think I ever played with her though. I don't even know if I talked to her.

- Another thing that happened in kindergarten was when I was in the play room with my cousin (not the cousin I mentioned in the beginning) and I had this doll which I seemed to love. I really had to pee, but I didn't want to leave my doll because I was scared my cousin would take it, so I just stood there and pissed myself. I don't think I liked to share my toys back then (another time with the same cousin I didn't want to share some toys when we were at my house and my mom had to tell me to share).

- My kindergarten teachers were worried about my gross motor skills because I was so slow and cautious when for example getting up on a swing, but when my mom talked to a nurse about it she thought I was fine.

- As far as I know, I never initiated friendships (until I was 16 and started the Swedish version of high school), but other kids did and that's how I made friends. This makes me doubt ASD, since I pretty much only hear of how people never wanted to be friends with them. People seemed to like me and my mom says the other kids tried to charm me and sometimes my three years younger brother made friends for me. Though quite a few of those friends I didn't like and I tried coming up with excuses to not play with them, or I did play with them even when I didn't want to. I was always pretty bossy with friends and my mom says that she could pretty much only hear my voice when I had friends over, but they didn't seem to mind my bossiness since they kept being friends with me? The older I got though, the less and less friends I had. Since I rarely initiated to play with them, they probably gave up after a while and that didn't bother me because I was just happy to not have to play with them anymore. All friends I had were either from kindergarten/school or some temporary friends where my mom was friends with their parent and "set us up". As a kid I remember wondering how my peers could have friends outside of school. That was a mystery to me. I have done some after school activities in my years, but I never made any friends from that (I always kept to the ones I already knew). The friends I had were fine, but I had one ultimate best friend and I miss her so much (I never see her anymore, we seem too different now). When I was 12 and started middle school, the friend situation changed though... I was bullied by my former 3 friends from my class (and other classmates). One of them says the reason they started bullying me was because of something I had done or said in 5th grade, which made me confused. As I entered my teens I understood how hard I thought it was to interact with new people, especially teens. I never wanted to go to parties, get drunk and meet new people, but I didn't think I had a choice. When I did meet new people though, I always sat there all quiet and they always said to me "why are you so quiet? or "why don't you talk?" and I just said I didn't know why or I had nothing to say. I had no clue what I would talk about and when I got left alone once with an unknown girl I had no idea how to make small talk. Although I have two very close and awesome friends today (my only friends and I don't want more), I am still terrible at initiating stuff so it's usually them who have to ask me to hang out.

- I was really creative and had lots of ideas as a child. I made up lots and lots of games with specific rules, but a lot of the time my friends didn't understand when I tried to explain it to them. My mom says they looked confused and I looked frustraded. However I gave up eventually and just went along with whatever they did if they didn't get it. Sometimes they did understand though and we could happily play my games.

- When it comes to regular games in school with many people though, I was pretty lost. I remember one specific game which was kind of hide and seek, but with a ball and I could never get the rules. My strategy was to just follow a friend and try to not be the center of attention, but when I was I stood there all confused and had to just say out loud "I don't know what to do now". Someone explained, but I never remembered when the next time came. Same thing with P.E, I never learned rules to most sports we played (especially volleyball where you couldn't really pretend to know the rules).

- I have always had a passion for creating art, especially drawing. I also loved to write fiction when I was little, although I never liked to read (probably because I don't have the patience to and my dad is the same).

- I've always had problems with saying no and I am very scared of conflicts because I take everything to heart. I had one "friend" in 7th and 8th grade who took advantage of that a bit and made me do stuff for her.

- Somewhere around 9 years old I was obsessed with a boy in my class (well I had crushes on a lot of boys for literally no reason). I thought about our potential relationship all the time and asked him to be my boyfriend way too many times even though he said "no" all the time. I still didn't get it. He was even mean to me quite a lot from the start, but I didn't seem to grasp the concept of people not liking me until I was 12, so I was oblivious. I was so obsessed that I forced my friend to break up with him (when they became a couple) and she did, but he still wouldn't "date" me which made me upset. One time some of his friends came up to me and said he wanted me to be his girlfriend and I was SO happy and said "YES!", but then they went and when they came back they said "It was a joke...." which I apparently didn't get. Honestly I am impressed that I still kept that friend after that.

These are just a couple of things and this is already too long (it literally said I had over 10k characters so I had to cut out a lot, which I will add in a new comment if I can)... I'm sorry about that. I would really like it if anyone out there could relate to things I've mentioned here, I feel so alone. Please share your thoughts with me!

Also, I don't know if this is the best place to put this post, but I hope it's fine.

 

[purplecloud]

To add to the already too long and boring text:

- When I was really young I had this cassette tape with an audiobook from the Swedish author Astrid Lindgren and I probably used to listen to that a lot, because several times I walked in circles (both outside and inside) and recited the whole audiobook from start to finish. I can say my parents were very impressed by that. Another thing having to do with walking in circles was when I talked on the phone as a kid. I have always had a fear of talking on the phone, so to help me focus and stay calm I walked around in circles following the outer pattern in the carpet. When I was around 10-11 I would sometimes jump in circles on our trampoline and pretend to be a singer I really liked at the time.

- I have always been a good student, with pretty good grades, but there are three things I always heard from teachers which was: I needed to participate in class discussions and raise my hand to answer questions (they knew I was good, but they needed me to show it verbally too), I had to ask for help if I didn't understand (I rarely asked for help because I didn't know how, when to do so and I didn't want them to think I was stupid) and I had to be more active in P.E (in sports and games I was pretty passive and basically just followed the ball a little when it was a ball sport).

- Even though I loved to be creative I never liked the handicraft class (I don't know if that's the correct name), which included things like sewing and woodwork. The reason being that I never really knew what to do because it was so hazy and that I never learned how to use the machines and stuff. I always had to ask the teacher for help (pretty much the only class I actually asked for help) and she would show me how to do things, but I would usually forget it the next time. Because of this I tried to do very basic projects so that I didn't need to ask for help all the time (it was embarrasing since the other students seemed fine), but obviously that didn't give me good grades.

- I thought hearing comprehension tests were hard, because I didn't know what was important and what wasn't. I just heard a bunch of voices talking and I probably focused on the wrong things. It wasn't that I didn't understand what they were saying (it was in English), but that I couldn't really sort out the important details and also remember them in the short amount of time we had to write it down. The more advanced the class became, the harder it was. I mean, I wasn't terrible, but I was pretty bad comparing to how I was when writing for example. I could get an A in writing and talking and all that, but with the hearing I usually ended up with a C and I really tried my hardest. Reading comprehension was pretty easy because you could go over the text how many times you wanted, but I didn't read the texts first and then answer the questions (because I wouldn't have the patience and I would just probably forget what I just read), so I always looked at the questions first and then tried to look for specific words in the text that could answer each question.

- Ever since I was born I have had different "stims". The first one was smelling one of my hands. I often had my hand over my nose sniffing it. When I was a toddler I flapped my hands when I was excited (and my legs if I was sitting down). I also did a sort of jumping walk when I was happy. Another thing is I would tense my muscles and my body would go stiff and then I would turn my head from side to side while also squeeze my hands together (I usually did this when I was creating something, like a drawing). I also loved running my nails along the seams on clothes. All these things I still do to this day (except the happy jump walk thingy", even more frequently since I started learning about ASD (before I used to wonder why I did these quirky things and I didn't know it had a name). I hide it though.

- Sounds I have problems with include: snoring, breathing, the wistle sound that comes with nose breathing sometimes and eating sounds (these are the most prevalent). When I was little I was kind of scared of people popping balloons because of the sound, I also thought fireworks were very loud and pretty scare (but I used to have earplugs back then, now I don't really mind). Something I have always hated is when people raise their voice, it always gives me a really uneasy feeling and I get a knot in my stomach. When teachers for example raised their voices in class I felt like crying even if it wasn't directed at me at all. Also, I have slept with earplugs every night since I was pretty young. I still remember the first time I used it and it was when I was around 5 and had my first sleepover with my best childhood friend. I came in sobbing to mom and dad because she was snoring.

- Other sensory problems I have include: hating the feeling of pruney fingers and feeling people breathing on me (like the air that comes with breathing). Those are the biggest ones. Also when I was a child I remember it was hard when I had my hair washed because I hated getting water in my eyes (it made me very frustraded and I wanted to cry which I probably did sometimes). The way we solved this was holding a towel in front of my eyes or having this thing over my head that was supposed to lead the water away from the face. I also have memories from when I was going out in the snow and I became really frustrated with how my clothes felt (because you wear so many layers in the winter), like when my pants would slide up a bit under the overall or if something felt lumpy. I also didn't like having the hairdressers combing my hair because it hurt really bad (but I didn't say anything and just held out).

 

[tree]

 

[purplecloud]

Honestly if anyone reads all this they deserve a prize.

 

[purplecloud]

View attachment 45366

Thanks!

 

[clg114]

Welcome to AutismForums!

 

[Phanelope]

I identify with a lot of what you’re saying. Not understanding games with rules. Especially organised sports. LOving to write fiction and draw. Not being able to say no and always wanting to please people but never really knowing how. Also being confused when I did everything people wanted but they still don’t like me. I also used to smell my hands and ball them into fists, or sit on them or squeeze them between my thighs or under my arm pits. I must have done it a lot because my mother punished me for it. I have a terrible phobia of balloons. They’re just awful. Everything about them.

I most agree with the not knowing who I am. When I first watched a video about women with autism I was so happy I cried. I thought I had finally found the answer. Since then I’ve had my autistic traits questioned by everyone including myself. I’ve noticed my sensory sensitivities have been so intense in recent weeks. I’m not sure if I’m making them up or if they had always been there but I had learnt to suppress them. I’m Questioning things that I thought I knew about myself, but now I’m not sure. Like reading body language I thought I was excellent at, but now I’m realising while I know, for example, that rolling eyes means someone is annoyed, I never really know what they are annoyed at. Also I think most of my social anxiety comes from having to guess what people want all the time.

I think this is what people call an “identity crisis”

Anyway, welcome to the forum. You’re not alone!

 

[Nervous Rex]

Welcome, @purplecloud! This is a welcoming and supportive place. I hope you enjoy it here.

A diagnosis doesn't change who you are. You are the same person now that you were before. Hopefully, it will help you learn more about how your mind works and what works for you.

 

[Thinx]

Hi Purple Cloud, welcome. Yes I recognised some of what you described in my own background, that obliviousness which is still with me a tad, but hey it can be a kind of resilience. Yes this will likely be a useful piece of the jigsaw of your identity, but still we are all unique and composed of many aspects. Life can be strange and tough, but is also a privilege. I hope you enjoy it here.

 

[WittyAspie]

Welcome! I skimmed through what you wrote and can relate to a lot of it. Your difficulty in making friends as you got older is a rather strong sign of possibly being on the spectrum. The more complicated relationships became the more difficult it became for you to make friends.

If you are diagnosed it won’t be the end; it will actually be the beginning of a new chapter, a time when you can begin to truly understand yourself. I know it can be disorienting at first, but it’s worth it. We’ll be here when things don’t make sense and you have more questions.

 

[SusanLR]

Welcome Purple Cloud.
And I read it all!
I relate to a lot of it, some not so much.
We're all different but share a lot of mutual traits on the spectrum.
The difficulty with friends I certainly relate with.
And some of the sensory issues. Especially with clothes and loud noises.
Food was a biggie with me, too.
We get around to a lot of topics here. I'm sure you'll learn alot about yourself.
Always feel free to ask questions.

 

[purplecloud]

I identify with a lot of what you’re saying. Not understanding games with rules. Especially organised sports. LOving to write fiction and draw. Not being able to say no and always wanting to please people but never really knowing how. Also being confused when I did everything people wanted but they still don’t like me. I also used to smell my hands and ball them into fists, or sit on them or squeeze them between my thighs or under my arm pits. I must have done it a lot because my mother punished me for it. I have a terrible phobia of balloons. They’re just awful. Everything about them.

I most agree with the not knowing who I am. When I first watched a video about women with autism I was so happy I cried. I thought I had finally found the answer. Since then I’ve had my autistic traits questioned by everyone including myself. I’ve noticed my sensory sensitivities have been so intense in recent weeks. I’m not sure if I’m making them up or if they had always been there but I had learnt to suppress them. I’m Questioning things that I thought I knew about myself, but now I’m not sure. Like reading body language I thought I was excellent at, but now I’m realising while I know, for example, that rolling eyes means someone is annoyed, I never really know what they are annoyed at. Also I think most of my social anxiety comes from having to guess what people want all the time.

I think this is what people call an “identity crisis”

Anyway, welcome to the forum. You’re not alone!

Yeah, this whole thing makes me so confused and lost. The possibility of having ASD is so hard to grasp, I can't help but question everything I ever knew about myself.

I also thought I was great at reading cues and body language, but when I think back (especially in my early teens) I was pretty clueless sometimes. I didn't know how to talk to new people so I usually stayed silent and one of my "friends" at that age always used to comment on how I said things the wrong way, was too quiet and she used to be pretty angry with me a lot and I had no idea what I did wrong. Out of nowhere she would turn away from me, look really annoyed (rolled her eyes for example) and barely speak to me for a while (happened a lot in school).

One time we had this dance in 9th grade (last year before high school) and everyone seemed to have already found a partner from other schools which I obviously didn't have since I didn't know anyone from other schools. We came there and my "friend" said she would just go talk to her boyfriend for a minute and I thought "ok, she says she will be back soon so I trust her", but I was left alone and she didn't come back until it ended. It was honestly quite traumatizing because I was all alone and I had NO clue what to do. I tried to enter the dance floor and ask random guys to dance with me, but everyone said no and I remember thinking "HOW can everyone else seem to find people to dance with, but everyone rejects me?". I assumed everyone just thought I was ugly, but thinking back, maybe I was just approaching them in a wrong/weird/too straight forward way. When I asked her later why she left me, she basically said "you barely talk at all, it gets boring". I just didn't know what to say because I was already depressed and I had pretty much nothing in common with her.

I'm sure my social anxiety came from those years having to fake a lot to fit in and being exhausted from it. Worst years of my life, definately.

 

[purplecloud]

Hi Purple Cloud, welcome. Yes I recognised some of what you described in my own background, that obliviousness which is still with me a tad, but hey it can be a kind of resilience. Yes this will likely be a useful piece of the jigsaw of your identity, but still we are all unique and composed of many aspects. Life can be strange and tough, but is also a privilege. I hope you enjoy it here.

I don't think I have that obliviousness anymore since I have terrible social anxiety and realised not everyone will like me (which is hard for me, because I want EVERYONE to like me). In high school I met likeminded people (it was an art program) so I felt more at home and one of my new best friends said people she talked to from the class said they thought I was cool, but I still didn't really feel comfortable with a lot of them. It was waaaaay better than my former class though so that was good.

 

[purplecloud]

Welcome! I skimmed through what you wrote and can relate to a lot of it. Your difficulty in making friends as you got older is a rather strong sign of possibly being on the spectrum. The more complicated relationships became the more difficult it became for you to make friends.

If you are diagnosed it won’t be the end; it will actually be the beginning of a new chapter, a time when you can begin to truly understand yourself. I know it can be disorienting at first, but it’s worth it. We’ll be here when things don’t make sense and you have more questions.

I have thought about that. I was always shy, but I had quite a lot of friends as a child, but everyone else around me who were shy aswell just grew out of it in their teens it seems like. Now they are out experiencing the world, meeting new people, working, moving out and so on. I'm just stuck and I still feel like a kid compared to them. I'm just scared the fact that I had friends growing up will stop me from getting diagnosed and my mom says I played a lot with people as a kid and that I seemed to enjoy it. The only thing is I rarely initiated thing, but my mom just says it's because "I didn't have to, because people always called me or came to me", but I think I still wouldn't have initiated it even if I just had very few friends. I mean, as I got older I got less and less friends and I still don't really initiate things. It was understandable in my early teens since I secretly hated the "friends" I had, but now I have two GREAT friends and still don't. It's like I usually want to be by myself, but if a friend asks me to hang out I will mostly say yes and do it even if I don't always feel like it (the people pleaser in me comes out).

I'm just scared of not getting the diagnosis, now that I have started thinking about ASD a lot. It would feel like a punch in the stomach if they say it's just depression and social anxiety or something (even though I know I have those as well). Then I will REALLY be lost and just feel like I'm crazy.

 

[purplecloud]

Welcome Purple Cloud.
And I read it all!
I relate to a lot of it, some not so much.
We're all different but share a lot of mutual traits on the spectrum.
The difficulty with friends I certainly relate with.
And some of the sensory issues. Especially with clothes and loud noises.
Food was a biggie with me, too.
We get around to a lot of topics here. I'm sure you'll learn alot about yourself.
Always feel free to ask questions.

I don't really have big issues with clothing though, I just had those memories from being a very young child (maybe I grew out of it). I've always been into fashion, or clothes, not the fashion industry. In kindergarten I insisted on going there with pretty dresses and such and I remember wanting to be a fashion designer as an older child. Putting together outfits and do kind of crazy makeup (crazy if you compare to just some foundation and mascara) seriously made me motivated to go to school in high school. I guess that was my routine that prepared me. Before high school I tried to fit the latest trends because my "friends" did, but I was never happy dressing like that so I broke out of it and found my own style in 9th grade.

I'm a pretty fussy eater, but not to the point it's a big problem. I just avoid what I don't like. In recent years I've also had problems with my stomach, like getting bloated everyday. I thought it began a few years ago due to stress, and that's probably what made it worse, but I know I have always gotten bloated from food. As a child I looked pregnant, not because I was fat, but my stomach just looked really bloated. I didn't really pay attention to it before though. My biggest fear in life is throwing up, so when I get too bloated nowadays I can get stomach pains and feel nauseous (which usually makes me panic).

Another thing having to do with food is that I have always had some problems with feeling hunger. As a young child I could come to mom and complain about stomach pains and she had to remind me that I was just hungry. I also have had the habit of forgetting to eat (still do sometimes), so when the evening hits I can get dissy, feel weak and have a weird feeling in my stomach and it takes me a while before I realise "ohhh, it's just hunger".

Sorry for rambling...

 

[purplecloud]

I would like to thank you all for your responses! I am always afraid of being criticized, but it makes me glad that you all are so kind and friendly.