Posted by: E (The Third Glance) | March 21, 2012

My Diagnosis Story part 2: Discovery and Understanding

I have said in several previous posts that I grew up without a label, without a diagnosis. I’ve been meaning to post about this for a while, and OutrunningTheStorm mentioned in a comment that she was interested, so here we go. This is the second of a 2-part post, as it is rather a long story. The first part is a “short” description of (some of) my childhood. Please read Part 1 for background. Here is part 2.

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I’ve known the word “Autism” for a long time. But I didn’t really begin to have an idea of what it meant. It was one of those words that was thrown around occasionally, that I would overhear, but never knew. I knew it was something that some of the kids in the special education program had. But that was all. I had also heard that one of the girls I went to middle school with, Kathleen (not her real name) had it. I didn’t know anything about what “it” actually was or meant, except that most people seemed to think “it” was bad. I was wrapped up in my world of science and never really stopped to think about Autism or learn more – it wasn’t relevant to my life at the time.

I knew I was different from most of my peers – “quirky and smart” – I was told that the reason I didn’t have many friends was that I was intellectually intimidating, and most people didn’t like that, but I didn’t know how to be anything different. Plus I (in my infinite wisdom) assumed that everyone else would be interested in learning about the cool stuff I was interested in, too – not so great for “bonding with my peers”. The people I was friends with, we were friends on an incredibly high intellectual level. I used to spend hours sitting in a corner, writing and solving math and physics problems with one of my classmates. I personally attributed a lot of my social failings to the fact that I lived in a relatively small town, where most of the students in the school had known me since kindergarten, and had their own biases, and to the fact that my mother was insane, and I came from an abusive household. I figured that once I got to college (and college was a given for me, no matter how often my parents told me I flunk out), that I would finally have friends, because no one there would have known me and the fact that everyone else hated me in school. The bullies wouldn’t be there, and I could start fresh.

And then I actually got to college. I moved into the dorm, and very quickly became “that kid whose mother won’t stop bothering everyone else telling them about her daughter, and who won’t f**king leave!” – my suitemates all regarded me with a certain air of disdain (except the one who met me after my mother had left). I told myself the reason I didn’t bond with them was because they had met my crazy mother. Probably partially true, but really only part of the story. I never felt connected to the other first years in my dorm, or really anywhere else. In my classes, I sat near the front, and ended up in study groups with the older transfer students – my first solid study group included 4 guys all over the age of 26 and one other freshman girl. No it wasn’t predatory or anything like that, we were just the ones who were serious about studying the material, and the older students tolerated me much better than the people of my own age.

I joined the LGBT club on campus (I identify now as an asexual lesbian, but at the time, I was just looking for some sort of community, and I knew I wasn’t straight, so I thought I would fit in there – at the time I identified as a lesbian). It was the first time I felt somewhat included in a group. People went out of their way to invite me to social things outside the context of the club. There was a core group of 1st years, who all seemed to do things together. They included me at first, then more and more, simply stopped inviting me to things. Then they went out of their way to hide that they were doing things when I was around. There were several people who I would interact with one-on-one, and we got along great. But I stopped being considered part of the “group of friends”.

Then one day, near Thanksgiving, one of the first years took me aside and had a 55 minute talk with me (on a walk), about all the things that everyone hated about me. All my quirks, all my social awkwardness, all of the things that I had been told all my life were problems. All the things my parents abused me for. All the things that I spent so much energy trying to suppress, to hide, to banish from my being. And then, to add insult to injury, some things that I was most proud of. Some things that I loved to do and think about. The things that made me, me. And looking back now, all things that were very obviously Autistic traits.

About a month prior, someone in the LGBT community at the school, but not part of the first-years group, asked me in passing if I had Asperger’s Syndrome. My immediate response was “no, definitely not”. Of course, I thought, I don’t have Asperger’s Syndrome! I know that’s some kind of Autism, but I’m not Autistic. I’m in college, after all! But the questions kept coming. First this individual, who claimed to have had some Autistic friends, and a cousin on the spectrum, who I was very similar to, then my RA, who was trying to figure out why people were being so nasty to me (I ended up crying in her room, curled up under her desk on one particularly bad night). Then one of the members of my study group mentioned it (he was working in an autism research lab). And the list just kept growing. Over the course of 2-3 months, I was asked whether I had some form of Autism Spectrum Disorder by 8 different people, all with different connections to Autism: people with Autistic family members, Autistic friends, and acquaintances; people with PhDs in psychology; people who spent their undergraduate years working in autism research labs; and even one Autistic person (though at the time, I didn’t know they were autistic). Each time I was asked, I denied it. I just didn’t think that I could fit the stereotyped view that I saw Autism as.

But as it was suggested more and more, by people who had no connection with each other, only with me, I started to think there might be something going on. And at least, I decided, I should see what this whole thing is about. I started googling “Asperger’s Syndrome” and came up with all sorts of articles. And in those articles, I saw fragments of myself, but only fragments. Sure, I had a lot of the same sensory and communication issues, but (and this was my sticking point) I never threw giant tantrums – I was an adult, after all! Sure, I cried sometimes. Yes, I definitely shut down in situations where I was overwhelmed, but I didn’t hit or throw or scream. But then I stumbled upon an article that described AS as it manifested itself in girls, and I saw myself. I kept reading. I became completely obsessed with learning everything I could about Asperger’s Syndrome (sound familiar?). I still wasn’t convinced that I had it – I didn’t feel like I had a disability – after all, I got a 4.0 in my first term of college! But nonetheless, everything I read was describing me, to some level. My university’s library has ebook capabilities, and I read every single book about Autism that was available in electronic form, because I was terrified to go down to the library, and get the books in print. At one point I had over 100 tabs open in my firefox, all devoted to understanding this thing called “Asperger’s Syndrome”. I read thousands of pages of personal experiences published by adults on the spectrum, from men and women alike. I read Tony Attwood’s “Complete Guide to Asperger’s Syndrome” – the entire thing. I devoured everything I could find, and as I gained more information and knowledge, my whole life began to make sense.

My world started to click into place. Suddenly I understood the WHY of my entire being. I understood the WHY of my childhood. I understood the WHY of my social interactions. I understood the WHY of my quirks, my sensitivities, and my difficulties I began to see the pattern in my parents’ abusive behavior. And with those answers and many  more, I was able to become a much happier person, a much more articulate person. The increased self-awareness gave me a framework to function. I became aware of the tools that were in my toolbox that I never knew were there. I stopped searching (as much) for tools that didn’t exist for me. I was able to cope with my surroundings better, because I was aware of how I was reacting. Instead of just raw terror at the thought of wearing a different set of clothes (I’m super-sensitive to textures), that could send me into a full-on shutdown, I was able to parse in my head: “I am sensitive to these textures. They make me very uncomfortable. However since I must wear this nice clothing for this event, I can wear a soft undershirt that will be close to my skin and that can help me to stay calm. I can also practice wearing the clothes beforehand, in a safe non-stressful place like my bedroom, to see where the biggest problems will be, and correct them. And I now have a valid reason to excuse myself at the earliest possible moment to go home and change clothes and get away from the insanity.”

This is just one example of how discovering I had Autism affected my life. I could give hundreds more. By using Autism as a framework to organize myself around, I was better able to function. Did it change my issues with sensory input or communication? NO. Did it give me a new set of tools to function out in the world with? ABSOLUTELY. Things started to make sense. Questions I had for my entire life were answered. This transformative experience is something that only “late-diagnosed” adults will truly understand. Although I was only 19 at the time, I was nearly completely independent from my parents, and already much more of an adult than most people are at 25 or 30 – I was the only adult in my family for most of my childhood. But I still wasn’t convinced I “had Autism” – after all, part of the DSM IV’s requirements was that my day-to-day life was profoundly affected by the condition, and I didn’t feel disabled, since I was getting good grades, and doing science, and had been trained to be able to take care of myself, I didn’t really care. I did realize that things were “getting in the way of leading the life my parents (and other neurotypicals who write these definitions) envisioned as normal and good” – but I’d known that subconsciously for so long and had adapted around it, that it took months of thought before I came to that realization consciously.

Somewhere in the midst of my feverish researching, I found wrongplanet.net, and started reading people’s personal experiences on the forum – as with blogs, I have a need to read every single forum post before I join in. I never really made it on wrongplanet, because it moves too fast for me to keep up with – too many posts and people. I took a couple of those silly online “Asperger’s” tests, because I was curious (and NOT because I was looking for a diagnosis. At this point, I was convinced that if I was on the spectrum, so the “tests” were purely for curiosity’s sake – I recognized them as stereotyped and not particularly useful for anything.). My Autism Quotient was between 46 and 49, depending on my mood. (A score of over 32 out of 50 is generally considered “Aspie”), and then there was one other (long, strange) test that I scored similarly high on (188/200 Autistic, 10/200 Neurotypical). I have always had an obsession with taking online personality tests, and knew that they really weren’t diagnostic of anything, but merely an interesting way to self-reflect. One afternoon, I sat down and wrote a list of my traits that might be related to Autism. I filled nearly 50 pages of a word document. As I read more and more, I realized just how much of “me” the neurotypical world considered to be “Autistic”.

Learning about Autism and Asperger’s Syndrome literally saved my life. After several months in college, I realized that there, too, in a world that is supposed to be about learning and intellect, I still didn’t fit in with the social groups. I was still a failure. Everything that I worked so hard to hide and fix and perfect, I had failed to do. While I was getting nearly perfect grades (I graduated with a 3.93 GPA (if they counted A+ grades, I would’ve had a 4.1), and had a 4.0 my first term), I was lost, scared, and truly believed that I was broken. Then I learned about Autism, and suddenly everything made sense. More than that, I suddenly had a framework to understand my quirks and sensitivities. I had something that I could base my thoughts and interactions with the world off of. I started to employ coping mechanisms that some of the adults in the books I had read used. I began to take more time off on my own (very hard when you share a dorm room with 2 other people!) and employ other coping mechanisms to get through my days. And I started to do better. At this point, though, I was still “self-diagnosed”. And as it wasn’t causing me any major academic problems (seeing a theme here?), nor did I have the financial or social means (therapists scare me a lot) to get formally diagnosed, I was content simply to allow myself to use the framework that AS provided to help live my life in a way that made me happy and caused minimal stress and anxiety when interacting with the world. That sounds like such a great idea, beautiful in principle, but then again, some things just aren’t so simple.

By the time summer break came around, I had read over 30 books related to AS (many in the form of memoirs by Autistic people), in addition to countless webpages and a bunch of scientific studies. I was pretty convinced that it probably applied to me, but content just to let it sit and stew. I wasn’t ready to tell people, or really claim the label for myself. I knew that Autism community in general really doesn’t like self-diagnosed people, since we don’t have a professional’s opinion, so I steered clear. My own enormously increased personal self-awareness, for whatever that meant, was sufficient. Then I went home for the summer, and worked 2 jobs, over 80 hours/week, to save up for school the next year, and so that I had a good excuse to not be forced by my parents to be social and to play their insane games. But I did help to clean out our basement.

One day I was down there alone, and I found a file with my name on it, buried deep inside a file cabinet. It contained a bunch of notes from my school, and a big section with an official page that read “E fits the diagnostic criteria for a diagnosis of Asperger’s Syndrome/High Functioning Autism”, signed and dated from when I was in middle school. It contained notes from teachers, letters between the school, my parents, and the psychologists who had made the diagnosis. It contained pages of notes about my development and growth from teachers and staff starting from preschool and going from there. And it was proof I had come to the right conclusion on my own. My parents didn’t want me to know, it seemed, because they didn’t want to label me. I was doing fine academically and they didn’t want it to become limiting. Reading it was overwhelming, so I didn’t go through very much of it. Plus I was terrified I’d be caught. Unfortunately, the next time I went to look for it, it was gone. We (my parents and I) have never discussed it. Later that month, I learned from my mother, that she once had me removed from the only class I found interesting and challenging in middle school, because the teacher insinuated to her that I might have a learning disability. She told me how she didn’t want me to internalize limitations. I admire her conviction, even if I disagree with her methods. That is the closest we have ever come to discussing my status as Autistic, and right now, I am happy to let it stay that way.

When I first found out that I had been diagnosed with AS, and had never been told, I was furious. I was furious at my parents for keeping something like that from me, especially since I wasn’t very young at the time. On the one hand I can understand the reasoning of “she’s not struggling in school, let’s not apply a label that has a lot of stereotypes behind it”. But keeping the information from me when I was an adult, off on my own, at college and beyond, is unforgivable. In some ways, I understand their decision: a label like “Autism” can be very limiting for a person if it is used inappropriately. As they argued to the school, I was more than fine academically, so there is no reason to single me out and put a stamp on me. Would it have lead to more compassion from teachers? I don’t know. I was diagnosed well before AS was recognized widely in girls, so it might’ve simply caused teachers to make incorrect assumptions that would’ve lead to me being worse off. That happens a lot with labels that aren’t well understood – it’s one of the reasons I keep a blog – to try to bring more understanding to the meaning behind the label of “Autism”. In retrospect, does it really matter whether I was labeled in the public school system or not? Perhaps I would have gotten slightly better grades. Perhaps not. Perhaps I would’ve been limited in the number of honors classes I was allowed to take, but again, perhaps not. It is hard to look back and see what might have been different.

But then again, and perhaps more importantly, it’s NOT only about therapies, accommodations, IEPs and government resources. It’s about self-awareness, too. It’s about knowing yourself well enough to both know your limitations, and how to play to your strengths. Being Autistic isn’t just about the right educational or governmental accommodations or lack-thereof. It’s about learning how to navigate a world that is meant for non-Autistic people. I had to figure it all out on my own, by trial and error and failure, and sometimes brutality. Don’t get me wrong, I believe that it is incredibly important for people to learn how to try and fail. But it is also incredibly important for people to learn what tools they have available to them. That is (in my opinion), the place for therapy, especially in young kids: helping them to unlock the tools and abilities they have, so they can live the best lives they can. I spent my youth forced to look for tools that weren’t in my toolbox, instead of practicing with the tools I didn’t even know I had. I wish I had known earlier.

I’ve known about my diagnosis officially for about 2 and a half years, and I was “self-diagnosed” (or really, diagnosed by numerous others and then reluctantly confirmed by myself) for about 8 months prior. As I’ve grown up more, this increased self-awareness has helped me more than I can say. I started reading blogs by Autistic individuals in the summer of 2010 (a year after I found out about my diagnosis), and it has been amazing to connect with people who have a very similar way of experiencing the world. Through their writings, I have learned countless ways of better functioning. But far more than that, I have learned that there are others like me out there. That I am NOT broken. That my quirks and stims are NOT inherently dangerous bad things that must be stopped at all costs. I learned that I CAN interact with people and have meaningful friendships that are valued by both me AND my friend. And I’ve learned how to advocate for myself. Learning that I am Autistic has saved my life, and I mean that wholeheartedly.

But even if I had never found that tiny little piece of paper, this would still hold true. I knew I was Autistic before I knew of an official diagnosis, and many Autistic adults are the same – they knew before they went through with the formalities. I am of the belief that most adult individuals who are “self-diagnosed” who have gone through the trouble of *really* understanding what Autism is (and who didn’t just watch The Big Bang Theory and take an online quiz), are probably Autistic. And quite frankly, if viewing one’s life through the framework of Autism brings an intense sense of inner peace, understanding, and realization of self, in addition to being better able to function and live a personally fulfilling life, then that can only be a good thing. As they say, “if it looks like a duck, swims like a duck, and quacks like a duck, it’s probably a duck”.

In a sense, I am lucky, because I came to this understanding at a younger age than many Autistic women. I have a lot more of my life to develop and live. I am finally mentally in a place where I understand my parents’ desire to keep the label away from me as I went through the school system. Would I have done better in school if I had supports? Maybe, but then again, maybe not. But how I did in grade school doesn’t matter anymore, and while I could choose to dwell on the past, I’m very happy with where I am now, and would much rather focus on the future and moving forward. It’s ironic that my parents’ actions, done in order to “fix” me, and to make me as normal and successful as they could, told me that I was broken, worthless, and would never measure up to their idea of success. I’m happy, I’m living a life that I love, that is filled with research, science, and intellectual discussions of my favorite things in the world. I’m able to live financially independently of my parents (thanks to being a full-time PhD student, I have a stipend and access to an affordable room in graduate student housing), and I have a cat whom I love dearly. I am an autistic young adult, making my way in the world. And I think I’m doing a pretty good job of it right now.

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Responses

  1. Love this. You are doing a terrific job. And by writing about all of this helping others too.

  2. Oh E… This is absolutely beautiful and moving. Thank you so much for sharing your insights.You write with such sensitivity and clarity, and I found your explanation of the function and importance of interventions particularly inspiring and hopeful:

    “I believe that it is incredibly important for people to learn how to try and fail. But it is also incredibly important for people to learn what tools they have available to them. That is (in my opinion), the place for therapy, especially in young kids: helping them to unlock the tools and abilities they have, so they can live the best lives they can. I spent my youth forced to look for tools that weren’t in my toolbox, instead of practicing with the tools I didn’t even know I had. I wish I had known earlier.”

    Your perspective is so very valued and appreciated! Thank you!

    Leah

  3. wow, E. this is really powerful! Thank you for being willing to share it with people. I was going to pull out the same quote as Leah did above. I read that paragraph several times. In fact I just wrote and rewrote my comment editorializing what is so powerful about it several times but instead I just want it to stand for itself. very powerful stuff.

    “I spent my youth forced to look for tools that weren’t in my toolbox, instead of practicing with the tools I didn’t even know I had. I wish I had known earlier.”

  4. […] be continued… Please read Part 2 Here (I will make this a link when I put up part 2 in a few days) Share this:TwitterFacebookLike […]

  5. Wow, I have two boys, aged 4 and 17, both on the Autism Spectum. You have given me a great gift to help my 17 year old come to terms with his diagnosis, only 5 months ago. THANK YOU!

  6. Thanks for sharing .. 🙂

  7. Unbelievable post. I am speechless and in awe of your achievements. My 6yo just been dx’d as ASD. I have to remind myself, its about unlocking what he can do.
    When he’s feeling “bibbly bobbly” we get “blanky” and I put it over are heads to block the world out to him.
    This morning he told me, under cover of blanky, that his brain switches on and off and that is why he gets snappy. I was stunned that he was able to tell me this.
    I hope that I am able to help him to find his way through the autism maze, with a map that works for him in the same way your frameworks work for you. All the best

  8. […] Third Glance: Words and My Diagnosis Story Part 2: discovery and understanding and The Third Glance and, ok, I’ve said it before, you should read the whole blog. […]

  9. thank you for sharing your story, so beautifully written. I think my little boy of 10 is ready to come to grips with his AS diagnosis and your story gives me courage to tackle this

  10. So much overlap with my experiences, particularly heading off to College thinking/believing that I would be starting with a clean slate, that ‘things’ would be better, I would finally have some friends and….oh yeh, I would be happy. The horror when I realised, very quickly, that nothing had changed!

    • Thanks for the comment! Yes, so true – I thought, “no one knows me here, I can start fresh!” – Ahahahahaaaaa riiiiiiiight…

      • High School was a living Hell for me. College was better because there was less physical confinement and more time for solitude and escape during the ‘school’ day. I will be blogging about this soon.

  11. Thank you for this, your words are as eloquent as they are insightful. As a parent of an Autistic son, I appreciate you and others who write about your experiences because you’re creating this roadmap for my boy – a whole tribe of you – that will help him to know who he is and what he is capable of someday. It is gift you freely give, and I cannot thank you enough.

  12. Thank you! You sharing this means more than you know.

  13. […] the summer of 2010, about a year after I became aware of my official status on the autism spectrum (though nearly 2 years after it was first suggested to me), I stumbled across a special needs […]

  14. […] My Diagnosis Story part 2: Discovery and Understanding […]

  15. Thank you, so much, E. I know that you’re following my own blog now, so I hope you read that your example has helped me decide to join in blogging about how it’s been for me. I wasn’t as lucky (well, it the last few years) as you – possibly because I was graduating high school when Hans Asperger’s papers were finally re-discovered. My mom’s told me that she went to the Geneva Centre for Autism (the place in Toronto that handles autism) and was told that at 18, I was too old. That they’d known that I had differences (so did I, but I thought it was because everyone was different – at least consciously, I do have an avoidant personality), but they had no information on what they might mean. So they had no tools to help me, and I had only maladapted tools to help myself, which didn’t really fit for me.

    And yes, the realization that here is the truth, that there are more people out there like you… it’s enormous. We (my Toronto psychologist and I) think what I call my “2007 meltdown” was because of this; my sister (who was a CDA at the time, or studying to be one) sent me a whole bunch of information they’d been given about ASDers and helping people with ASD, and I got a few pages into the first article and couldn’t stop crying. Suddenly I wasn’t alone.

    It’s still been a hard journey, though, and it’s still continuing (currently with *very* little help aside from my parents – who are great – and my SLP sister, and my psychologist here). I think that writing my blog is going to help a lot – so I thank you for that as well, for serving as an inspiration to me. You, FlappinessIs, and Aspects of Aspergers…. It’s thanks to you that I now have a few more tools fit for my hands. So thank you, from the bottom of my heart. (Well, not literally. My whole self owes you thanks. 😉 )

    😉 tagAught

  16. I couldn’t write this any better myself. But because I am a helping professional, I have less margin for error in writing stuff like this than you. Since my recent blogging debacle, I become very conservative writing wise (though I am still pretty open speaking wise whenever I have opportunities to speak about autism).

    I think the recovery experience really helps you grow up… if you try to take things that come at you in stride. You are a strong woman/girl (don’t know what you prefer). Nobody can take that away from you. Besides, it’s not the matter of how fast you cross the “finish line”, the more important thing is that you reach the “finish line”. This is something I wish more individuals with autism who are in where you were before to know. This is also something I wish my parents know, to tell the truth.

    Also, despite having a pretty successful social life since my diagnosis, one thing I have learned is that- it’s not the matter of how many friends you have in total, it’s the matter of how many TRUE friends you have that really counts. My motto always is trying to be a true friend to whoever comes my way. But, if people don’t reciprocate that, then it’s their loss, not mine.

    Keep up your good work! (I am saying this as a friend and a fellow autism advocate… not as a licensed occupational therapist.)

  17. Thank you for sharing your story; I’ve really enjoyed reading your blog posts, and as someone who’s trying to figure out my own diagnosis, I find it really helpful.

  18. Hello, I am a fully blind male who’s 22. I’d say above average or at the least average intellect, not sure. As a male all I can see in the literature and other peoples blogs etc, is the melt down aspie who tantroms and rages. I as far as I can recall never did this. Early memories include being obsessed with numbers and being very good at mental arithmetic way above what I should have been at my level. I was doing things like 55 thousand squared, thinking about it I actually got that one wrong, but in primary school breaks I would either be doing maths or my version of play, pushing people into fences or wrestling. I also when I was younger around 5 6 or maybe 7 remember every day or most days running to my room to listen to the same book repeatedly, it was something about squirils in a forest and the forest got burnt down. It was the first thing i’d do and I remember loving it because I new what was coming next.

    I remember not interpriting jokes and having a horrible time of it with sarcasm, so to get around this I read books with people in them to learn how they functioned. and I new that was what I was reading it for, think this was around 11 or 12.
    The flukes that don’t fit, I didn’t have to have a strict adheerence to routines. In some ways sure, I would only for the longest time eat peanuttbutter sandwiches and drink water, graduating eventually onto milk and other stuff but with great reluctance. But the typical information about people who meltdown because their seat wasn’t there, or because their routine was interrupted never really has ever effected me. When younger, from 6 or 7 to about 12 or so I did have friends. I wasn’t introverted to the exclusion of all socialness. I had a group of friends around my area who i’d go out with and play on skateboards or bikes etc. However, another thing that fits perfectly is my pain tollerence and not expecting to go to my parents for help. I wouldn’t cry due to most pain and would continue playing. A vivid memory I have is 1 day I was in my house and burnt my arm pretty bad on the iron. Again, not sure how old I was but maybe around 9 or 10? I didn’t scream like most people would do and my mother was at the door talking with a friend. I thought that she was busy and it would be rude to interupt her talking to her friend. So I waited until she was finished, and her response was confusing. “of course you should have told me sooner.”
    I mean I get it now but the thought never occured to me. There’s a multitude of social things that went wrong around highschool, but I took that to being a blindy and that marking me as different. The first day for example I went around asking everyone if they would be my friend, since if they said yes then they would be and if they didn’t want to be they wouldn’t. Of course this got me ridiculed by my family and frustrated me to no end.

    Then there are the other things that for the longest time I thought were blindisms, like not being able to block out conversations, and hating crowds, and having to learn peoples voicetone and emotion rather than it being implicit. There’s also the issue with emotion, but I was abused for 6 or 7 years by my brother , but I see so much of it as aspie emotional management it’s creepy. I can suppress emotion very well usually unless i’m way too stressed to function, that is the abuse i’m pretty sure of. Before that I remember being emotionally sensitive and getting upset a lot. There are also my teenage obsessions, I read books for most of it, my vocabulary was always above average since I 1 was given tape books by my gran from a young age, and when I got my hands on a talking dictionary at primary school I used it constantly and was always playing with words and language. But back to the point, teenage obsessions. I took up programming and would spend most of my evenings reading and coding, and because I was lucky enough to get a laptop for school use in most of my lessons. One thing where the multiple conversation thing came in handy I could have headphones on with my screenreader and still repeat back verbatum or summarily the teachers lesson, it was always fun when they tried to get me for not listening and their annoyance at the guy repeating things precisely even though I was watching a film or writing or reading books.

    I met a woman who turns out to have aspergers online about 4 years or so ago now, me and her clicked quickly, to date she is the best person to talk to about intellectual things that i’ve found, culture politics society etc most of our conversations weren’t boring, but I still didn’t think that I had anything near aspergers I was just querky, because I was getting on trains, going to college and university and highschool had left me not really caring about social friendships in person. It was easy enough, since I had a solid friendbase online to pass it off as people being judgemental because i’m a blindy. Which in my oppinion I still hold to to some extent.
    Now we fastforward a few years, I dropped out of university for a bunch of reasons and am living in my own place which is great. I can have family around if I want them as long as they give me notice, and can go back there if I want for short bursts of time. I always after a week or so being around people want to get back to my own place to relax and chill out There’s lowlevel tention that I now since i’m watching my internal responses to things that is there with most people in person, conversation is fast, there’s body language issues, there’s the correct things to say in situations. Mostly I do very well, I can pass off as alright, I don’t have social scripts like quite a lot of aspies do, but I am constantly trying to focus on the other person and what they are thinking and what their motives are, it’s like a soundtrack of when I say this this is how they will feel and this is what they really mean when they say x y or z.

    So this all came to a head when my mother said that she thought I might have aspergers one day since I had failed to get to some appointment thing on time due to some distraction and she was trying to work out why since i’m smart enough to hoard research on whatever interests me; why it was so difficult for me to get myself organised to get in a taxi and get to places on time. She listed off a bunch of traits and explained how I was when a young child, obsessions have always been a part of what I am, and in fact I love them they’re great. When you’re lost in a book for 12 hours straight and time disappears, or you’re writing a bit of code, or researching it’s great. But I forget food and water when in that state usually.
    Things I used to do as a kid was walk in a circle from the age of 3 or so slamming consecutive doors in a pattern. Her memory isn’t accurate enough to detail exact time periods, but enough so that she ended up putting locks on her doors so I would stop.
    I’ve never according to her liked crowds and always required time to go and be on my own, interaction was sort of shunted upon me.
    So basically my issue is I don’t fit the criteria well enough as far as i’m concerned, where was the screaming melt downs? Why didn’t I tantrom, I withdrew, but no self mutilating behaviour, so even that can’t fit.
    I know I had to learn social skills, reading books and figuring out how the characters would interact and have huge issues with detecting my emotions, but don’t have the panic attacks when in crowds, there’s intense stress when I leave them though, usually feel sick worn out and drained. There’s the conversation issues, I hate small talk and am going to try learn since I kind of view it as a some what necessary skill for any social interaction in person to occur.

    I’m set for a diagnosis soon, but am worried because I am so intigrated in a way they’ll think i’m over exagerating, hell I kind of do. Soo, just wondered if anyone had oppinions on this. If it’s too scattered, my appology, just writing this down as I think it straight into the edit field. Laters.
    Oh, final note, eye contact obviously doesn’t apply I have no issue with turning to face a person, but in groups of friends it’s usually hard for me to fit in socially. They all complain that I am quiet when in fact i’m watching a conversation to see where I can insert myself or most of them hold no relevance to my areas of knowledge so there would be nothing for me to say. I don’t understand peoples issue with silence and relaxing in someones company, to me conversation usually should be for communication or talking about something that is interesting.

    Oh, and another thing, I have a very vivid memory of social mistakes, this I learned a few days ago is somewhat of an aspie thing, but i’ve had issues with perfectionism for years. It’s why I gave up programming and most of my other persutes since to me a tallent is something like the author of this blog describes, science where you new you were good at it and exceled in. The area I did excel in was math, but that was torn down due to diagrams and them not teaching me correctly so I failed the exam, that in my brain told me that at 11 I was not good at maths so i rerouted the focus onto english, then when I had a few arguments with the english teacher, to computers. It’s a flawed thought process I get that, but it’s one of the hardest things, for some reason a piece of paper overrides if I think I am good at something. Alright, end the spew of conciousness. Laters for real this time :).

  19. This is a great article! I was recently diagnosed and am finishing something similar (24 pages – yikes!) to form the core of my first few posts. For me it was a very long process to accept–heck, to understand–and come to terms with my diagnosis, but in the end was incredibly liberating. Your blog has really helped me during the process of comprehending my diagnosis. (I even quoted you.) Keep up the awesome writing!


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