Posted by: E (The Third Glance) | March 20, 2012

My Diagnosis Story – Part 1: Childhood

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 going to be a 2-part post, as it is rather a long story. The first part is a “short” description of (some of) my childhood, setting the stage (or should I say, a very abbreviated abridged selection, which is most relevant to the second half. But for a better understanding of “me”, please look at some of the other posts here). The 2nd part will be about how I came to first understand what Autism was, and then realize and accept that I had it. This post could totally be titled “Portrait of the Autist as a Young Girl”, but I’m not going to do that, because that’s corny. I’ll content myself with the mention here. I should warn you now that these are rather long and brutally honest posts. I think they’re worth reading (of course), but they are a little longer than my usual posts. At any rate, here we go.

My diagnosis story, part 1:

I spent my whole childhood knowing without a doubt that I was distinctly different from my peers. They talked differently from me, and hated that I used “big words” that they didn’t understand. They wore different clothes and mocked me for my outfits – little did they know that I spent hours agonizing over not being able to wear clothes like them (my god they made me feel awful and uncomfortable, and often physically sick) and more relevantly, to please my mother, who often called me a prude (she still does) because I dress conservatively. I preferred to bring a book to recess instead of running around in the chaos. I was obsessed with rules, and got very indignant when people didn’t follow them – thus I became a tattletale, further degrading their opinions of me. I heard the phrases “look me in the EYE when I’m talking to you!” and “quiet hands!” and “sit still!” and “sit on your hands” and “stop tapping/swinging your fingers/arm/hand/leg/foot/etc” nearly every day. I thought I must just not be trying hard enough, and so I tried harder and harder to please my parents and teachers and classmates.

I was always a few beats behind in interactions with my peers, and would only really enjoy an interaction when I could set the rules on my terms (read: monologue about special interests – I was definitely a “little professor”). I had intense special interests and could talk about them for ages, reciting facts and synthesizing them. I was the “walking, talking encyclopedia” and proud of it (still am!). I was also clumsy and would trip over my own feet and quite often just air. I would go mute in stressful situations, and cried when things got too overwhelming. People in my world hated and often brutally punished “criers” so I learned to suppress it sometimes, which was even worse for my mental health. When I was upset, I would go to the smallest place I could find, curl up in a ball, and press my eyes into my knees, and my back into the corner, if there was one. This lead to me hiding under my desk, under tables, or once, memorably, in my locker.

While my peers were listening to pop music and discovering their favorite bands, whenever asked, I would respond that my favorite music group was “The Boston Pops Orchestra” – they played the coolest music and did it well (I am a classical music person and listened to the classical radio station for hours every day – it is the most beautiful music, in my opinion). I was only truly happy when I was learning about my special interests or playing music (I’m an amateur pianist). There was always a divide between me and my peers, often a brutal one that lead to bullying and misery on my part, though looking back, I see how much of the bullying and hatred I simply missed due to my social obliviousness – so oblivious I missed about 70% of the crappy stuff the kids did to me, because I just didn’t perceive it. The main divide, I realized when I was quite young, was that they cared about people and what people thought of them, while I cared about facts, and knowing a lot of stuff. This doesn’t make for good communication. It’s not that simple, obviously, but it does make a good initial division. I was held back to repeat a year in preschool, because I didn’t wasn’t interacting properly with my peers, and they thought I could use more time learning how to play. I think the writing was on the wall from that moment on, that I was distinctly different from other little children my age. I thought I was broken, and if I worked hard enough, I would be fixed.

When I was in 1st grade, I became friends with a 2nd grade girl. Who was to know we would be friends for life? She spent countless hours helping me along socially, showing me my mistakes and helping me to blend in. I idolized her when I was little, and still look up to her today. She was the first person to give me the Third Glance, and I owe a lot of my ability to “pass” to her. Plus, I had a friend. One friend, who was there for me. It gave my parents an excuse to ignore my other differences and social deficits.

I didn’t find out until very recently that my 2nd grade teacher was the first to raise flags about Asperger’s/ Autism. The diagnosis had been around in the US for only a few years, and its surprising that someone was able to pick it out in a girl (the teacher was working on her PhD in education at the time). There was push for a full assessment that was resisted vehemently by my parents: “She can’t be Autistic, she has a friend!” and “She’s not Autistic! She’s just super smart and a little awkward! She taught herself to read when she was 3.” were the rallying cries. The school agreed that they could hold off on an assessment, since I was academically doing more than fine (by that point the school had run out of math for me – I’d completed everything up to 6th grade by the time we were halfway through the 2nd grade year. I was also reading at a college level.) – in fact, the Principal of my school once told my mother that I was one of the last students placed into classes, because they said I “would be fine with any teacher, because [she is] quiet and does what they tell [her].” – I had internalized the invisibility thing at a very young age. I knew not to cause problems. I just kept my head down and did my work, even when it insultingly simple. I never wanted to cause any problems, so I worked incredibly hard to be perfect. So since I wasn’t struggling academically, and the only supports would have put me into a special education situation, greatly reducing the level of academics I was exposed to, they simply started putting me in weekly social skills workshops with the school counselor and a scattering of my peers and students from the other elementary schools in town. I thought there must be something wrong with me, but I could never figure it out.

Unfortunately, this “support” and “therapy” didn’t solve the problems I was having. I was really good at the social skills workshops. I always knew the answers of correct things to do in the situations. I just couldn’t put it into practice in real time. This is still a talent of mine, in that I can read social situations like a book, as long as I’m not involved (my mind is like a supercomputer – I’ve figured out the rules. I just can’t compute them while in the situation, because my mind has a zillion other things to worry about, then, too). And for the most part, the silly workshops were really obvious: for example, when someone says a mean thing about someone behind their back, the person listening should say “that is not nice. Do not say things like that” and then refuse to pass it along. If you see someone sitting by the side of the playground but not playing, you walk up to them and say “Hello, my name is X. Would you like to play?” When someone is smiling, that means they are happy, but if they are frowning, they are sad. These are simple rules. But I couldn’t process them in real time when I needed to. I thought I was broken.

Despite the fact that these social skills workshops didn’t help at all, I was subjected to them from 2nd through 5th grade. I would still bring a book to recess. I was still bullied by my peers, and couldn’t even begin to stand up for myself and be heard. I still couldn’t speak properly or interact with the other children appropriately. I even went so far, sometimes, to move my whole desk and chair outside the classroom, because it was so chaotic in there that I couldn’t function. Sometimes the teacher would let me stay there for 30 minutes. I still couldn’t tolerate different foods and textures. I had a peanut butter and jelly sandwich literally every single day at school. They had run out of academic material to challenge me with, but didn’t want to skip me up a grade (or more), despite the fact that my only friend was a grade older than me, because they thought it would screw me up even more socially, because I’d be with people older than me. I made my way through elementary school by befriending the kids who didn’t speak English (my school often had foreign students whose parents were doing visiting professorships at the nearby universities – I would interact with them after everyone else decided they were “not cool”. Cultural barriers were always assumed by both of us, and they didn’t think I was quite as weird as my classmates did. The rest of my elementary school teachers raised flags about my social development, but the word “Autism” didn’t come up again – the rest of the teachers had been teaching for 20+ years and I think it wasn’t even something they knew about in the context of girls who were academically gifted – it still carried the image of a young boy completely locked in his own world, self-harming, unreachable, and unteachable. That wasn’t me, and my parents and teachers used this as an excuse to ignore it, and instead spend countless hours and energy forcing me to conform.

Then I got to middle school. I crossed districts to get away from the bullying, and because my best friend was in the school already. And in middle school, I actually made a friend in my own grade. She was that “mother hen” character that often comes up in discussions of Autistic girls and their development. She went out of her way to include me, and help me out, and she adopted me into her group of friends. She was the second person to take the “third glance”. But I was still miles ahead of things academically, and miles behind socially. The school psychologist started “seeing me” on a semi-regular basis. One day we met with someone I didn’t know, who wasn’t from the regular school, and they asked me tons of questions about myself. They followed me around to my classes and sat in the back of the room. I met with this person several times, then stopped. I hated going to the school psychologist, and eventually that stopped too. I found a teacher who would let me eat lunch in their classroom, while reading a book. We even found a couple other kids and formed “literacy club”. Ironically, middle school, which is supposed to be the time when girls struggle the most socially, I had (for the first time) somewhat of a solid group of friends in my grade! I was always on the periphery, but they invited me to their birthday parties, and sometimes over to their houses. Sadly, when we got to high school that ended. We all went different directions and were in different classes. They stopped treating me respectfully, rumors started flying, and I was suddenly without friends in my grade, again.

Throughout all of this, I still had my friend from 1st grade. I became “friends” with her friends – we all took the bus to school and it would get us there 30 minutes before school started, so we would sit together in the cafeteria and talk. I never had classes with them, and wasn’t ever invited to any of their gatherings outside of school, but my definition of “friend” was someone who talked with me and was nice, so I had some friends. It never really occurred to me that they were simply tolerating me at school. Oblivious. They did like my company, but never wanted it outside of that 30 minutes in the morning. This doesn’t hold true for my original friend and one other girl, both of whom I am still friends with today.

And so throughout high school, I became isolated. I was part of an academic club that was my saving grace – it was all about my special interest, and boy did I dedicate my life to it. I read tens of textbooks, hundreds of webpages. I had a group of people who I saw once or twice a week, who would talk to me about my special interest. I wasn’t friends with them outside of the context of the club (they were all friends with each other, though). A theme throughout my life is that I can’t carry on a conversation about “nothing” or “fluff”. I don’t know how to have friends outside of the context of school or academics. I don’t know what to do as soon as you remove us from the controlled environment where we met and usually interact. I thought it was just because I didn’t have enough practice, since I hadn’t had friends in my early years.

But through all this, I was doing fine academically. In fact, it was really pretty easy for me, and my biggest issues were motivation to do the work. I definitely had executive function problems, and turned in essays that were written the day they were due. I lost some homeworks, and didn’t get everything in perfectly, but overall, I was still doing pretty well without external academic supports. The material wasn’t challenging, and I was bored. I’ve always been a good (and fast) test taker, so I’ve never needed the “extended time” or “separate room” accommodation. I’ve always been able to do just enough to get by on my own. I wonder whether I could’ve done better if I had had any sort of supports – I might’ve graduated with a 4.0 instead of my 3.6. Or maybe not. But in the end, it really doesn’t matter that I got a B- in high school French because I just couldn’t get all of the work done properly. At the time, though, I thought I was just a complete and utter failure for not being perfect, academically, since for the most part, the concepts were incredibly simple for me.

Then I got to college. I moved across the country to a school where no one from my high school had gone in over 10 years. I figured I would have a clean slate. A chance to start over where no one knew me yet. I could finally, finally fit in. I moved into the dorm. I went to classes. I joined a club. I made friends. I started doing research (!!). I was immersed in academic heaven, surrounded by opportunities to think and work and learn all about things that pertained to my favorite things, and it was wonderful. But rather than blend in and fit with my peers, I stuck out more and more. Those “friends” decided they didn’t want me around anymore. In the fall of my first year, I heard the words “Do you have Asperger’s?” for the first time. Little did I know how much that simple question would change my life.

To be continued… Please read Part 2 Here (I will make this a link when I put up part 2 in a few days)

Advertisements

Responses

  1. Thank you for providing this insight into your personal story, which is very touching and explanatory.

    There are some of the things you write that I can personally very much relate to. Like this:

    I don’t know what to do as soon as you remove us from the controlled environment where we met and usually interact.

    I’ve got a similar inflexibility issue … I don’t like to visit people in their homes, even when I enjoy their company in a familiar context with a defined, familiar purpose and time frame (e.g. a project group, a course, or Church, for example) and have known them that way for a long time. Remove the purpose and familiar context: and they are suddenly strangers. Quite awkward and sad.

    I also don’t like having visitors in my home, especially not unexpectedly. I think I might be better at it if I got used to it. I would like to, in order to validate friendships and avoid making people feel unappreciated … but I am not there yet (@ 40yo… slow learner… or maybe hopeless on that point). Meetings without a clear purpose are confusing, because there is nothing to relate to.

    and this:

    Cultural barriers were always assumed by both of us, and they didn’t think I was quite as weird as my classmates did.

    Cultural barriers make both parties expect and embrace differences instead of sameness/a mirror of themselves. That is a good starting point for a honest relationship.

    Also, people with different cultural backgrounds don’t easily pick up on subtle social mishaps and tend to value traits that make making friends and integrating easier for them, like honesty, friendliness, loyalty, openness, acceptance of differences.

    I also think migration can make integration easier for some people who are ‘too different’ within their own culture because traits people in the new country don’t understand are categorised under ‘cultural differences’ instead of ‘weirdness’.

    Anyway, such issues of mine are no where near the stress you have been through in form of ‘alienness’, lack of acceptance and pressure from your family and surroundings. I am not sure how to express my sympathy, but here it is.

  2. E. thank you for taking the time to write about those early years. I wonder when people will realize that the way kids and teens treat others is a reflection of the way adults treat others. Sadly our society is one which encourages this kind of behavior. The only way that I know of to change bullying is by educating and leading by example. I blog for the Huffington Post and am beginning to think about a post I intend to write about “autism awareness.” Words that have become almost meaningless in that those who are trying to spread awareness are NT and it’s not always clear to me what their various messages actually are other than to create more fear. It seems to me, if awareness is the goal, shouldn’t those who are autistic be the ones spreading the awareness. Would love any of your thoughts on the subject. I know you are busy with all your studies and your own work, so I won’t take offense if I don’t hear back. Just throwing it out there. By the way, I wouldn’t quote anything without your permission. Would also be happy to send you a document of the piece I intend to write, so that you can see it before agreeing to anything.

    • “It seems to me, if awareness is the goal, shouldn’t those who are autistic be the ones spreading the awareness.”

      You, my friend, have just said exactly what all of the Autistic self-advocates out there believe. And I thank you so much for thinking that. Partially, that’s why I keep a blog. I know it’s why a number of my blogging “friends” keep blogs. Are you aware of the Autistic Self-Advocacy Network? (http://www.autisticadvocacy.org/)

      Unfortunately, sometimes the only people with a platform to spread awareness are the parents – just by the nature of how our society works, there are significantly more parents who are connected to each other. I think sometimes the most progress can be made when parents use their platforms to spread awareness by giving Autistic individuals a voice. But anti-bullying does come from the top-down. When parents pull their child away from someone who is different, or make a negative comment about someone, that teaches the child that it is OK to dislike someone because of their differences. And more-so, that it is OK to do it publicly to make that person feel bad. Very little kids play together much better than older kids. Because as they grow, kids learn from the examples set for them.

      I also agree with you that a lot of the “awareness” campaigns are more fear-mongoring than actually productive. It’s sad.

      • I want to write a piece for the Huffington Post that allows autistics to write about what “awareness” means to them. I am aware of the autistic advocacy site and will look into contacting them. In the meantime, would you be interested in writing something about awareness? As I wrote earlier, I can send you a draft of the piece I am thinking of writing, before you decide.

      • That would be fantastic! I could probably write something about awareness – how long and to what theme? If you wanted to email me (my email is in the about-me tab), we can discuss that further. 🙂

  3. I want to thank you first of all for writing this. I’ve read all the books explaining many of the concepts you touch on here but, for me. I just can’t get it unless I see it written out in first person accounts like this. When you and others let me see and experience the world through your eyes, I get it, in a way that I can’t trying to understand more textbook explanations of concepts. so thank you.
    I love what you wrote about the social skills groups and how little they helped you. We are seeing the same with my son, he has all the rules memorized and rattles them off whenever asked but often does not apply them in the situation. We have looked at social skills groups (because it is what you do) but his former preschool sped ed teacher, who I respect enormously has urged me to keep him away and that they will actually interfere with his learning social skills. She has told me to spend my energy and money instead on getting him into social situations with kids who have great social skills – not meaning NT skills- but more like finding good natured, kind children like your 2nd grade friend sounds. She tells me this would go much further as he is picking up his skills through modeling what he sees as successful in kids around him and a social skills group would only expose him to more kids who are as confused as he often is. Of course it’s much easier to plop down some money and sign him up for a social skills group and feel like I am doing something, but your experiences really echo her point.
    Anyway, I could go on and on I suppose, but thanks for writing this, I am really looking forward to part two!

    • Yes yes yes! I completely agree with that teacher. I have always learned best by watching other people do things first. In that sense, I always try to go to new places and situations with someone I know and trust, never alone. I stay on the periphery until I see how things work. I learn from other’s explicit examples. It’s not helpful to memorize a list of rules, when you can’t apply those rules in real-time.

      Also part 2 will be up later today, I think. It’s almost completely written, I just have to find a way to end it. (That has actually been the reason this wasn’t up several days ago – I wanted to be sure things were set…)

  4. Thank you for taking the time to write your story and to trust us with it. I was so very happy to read the ending, and happy about the one girl that seemed a great support to you. I am sorry your earlier years were isolated and hard. Your story will undoubtably help others. I might have my 13 year old read this. He has Aspergers. Great prose. Hugs ~ Sam 🙂 p.s. teenage years have to be the toughest for sure.

    • Thanks 🙂 I think, sometimes, that it’s not me taking the time to write. It’s that I have to write and share this so that I can prevent even one person from going through what I did. And because it’s how I’m processing things.

      • Yes. That’s how I feel, too. The time is in the editing for me, though. 🙂

  5. […] 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 […]

  6. Thank you. As I read this (and many of your previous postings) I feel like I learn so much. Your accounts of the struggles you endured help me gain some perspective. I personally struggle emotionally every day when I worry about my HFA child being bullied or disrespected. I look at him and i value all of his little quirks, but the sad fact is that not everyone sees him through my eyes.
    He is just 4 and a half now and I can see often times that NT peers lose interest in him because he is talking in a manner that is above them intellectually (and he often repeats himself). It kills me to see his face when he realizes he has been rejected. I can see that he doesn’t understand what he is doing wrong that his peers don’t like. He is currently in a preschool class with 10 kids with HFA and 10 NT kids and the curriculum is socially driven. In that environment he is doing well, but when we go to a new place with unfamiliar kids he struggles. I completely accept him for who he is but I don’t want him to endure any more pain than he has to. What are some of the best ways you have learned to read social cues? The therapists want to flood him with social stories.
    What is worse is when adults comment or laugh at him because of his uniqueness. Especially when they do it in front of him like he doesn’t hear them.
    I applaud your efforts (and the others that commented above) about making ‘autism awareness’ more of a positive thing and from the irreplacable point of view that you so articulately share. Much of the autism advocacy is from parents but I hope that individuals like you continue to add to that campaign 🙂 It seems the world (or at least the US) has increased awareness in the last several years, but there is still a lot of work to be done. My husband is from Europe. When we travel there with my son to see his family, it might as well be the 1950’s in terms of awareness. NO ONE gets it. They think he is a brat for tantruming over loud noises and spoiled for not eating certain foods just to name a few.
    Finally, in a previous comment, I asked if you had siblings. You said you had a sister. Is she also on the spectrum? Did having a sibling help you develop any social awareness at all? I have a younger son also that my older son seems to have learned a lot from.
    Thank you again!

    • Thank you for your comment. 🙂 I know it’s hard to have lots of people reject and sometimes bully your son. It shouldn’t be that way, but of course, people are mean. I learned social cues in a number of ways, from my parents and friends and sister explicitly telling me what to do or what various people are thinking/feeling (and as I got older, I would learn to ask, too), as well as from reading and just watching. I learn by observation. My sister is probably not on the spectrum – she exhibits a lot of Autistic traits, but in the same way of most younger siblings, she idealized me, and adopted a lot of my quirks. I also played a HUGE part in her upbringing (often I was more present than our parents), which further added influences. She doesn’t think she is on the spectrum, though she might be. I know it runs in families. My father is a poster child for “undiagnosed Asperger’s Syndrome” and my mother, while definitely NT, has several Autistic-like traits. It wouldn’t surprise me if my sister exhibited “clinical level” Autistic traits. But she also definitely has more “awareness” than I do, and when we got older, she began to tell me how to function properly in social situations. So she’s definitely “helped” me, but moreso when we were both older.

      As for bombarding with social cues: something that helped me a lot was watching TV shows and movies, and discussing the social cues exhibited in them. They are often completely obvious, and the actors explicitly make them bigger and more important. Or perhaps reading books, though you can’t see characters. But more importantly, helping him to develop ways of understanding them in real-time. That was the hardest for me – rules make sense. I can deal with rules. It’s just in real time when my brain can’t process fast enough and there’s other things going on, and I’m usually on the brink of a s sensory overload, that I can’t figure things out. So mostly, developing algorithms and coping methods helped me.

  7. […] 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 parenting blog. I was hooked. I read it from beginning to […]

  8. As I was reading this entry in depth, I thought about my experiences during this time and did some comparing and contrasting.

    Similarities

    1. I was like you in these social situations prior to getting into OT. I already knew what to do in a lot of basic social situations.

    2. I was pretty good in school, too… though nowhere near as smart as you at that time.

    3. In High school, it was probably the time I had the most friends.

    Differences

    1. I never really had services before I started graduate school.

    2. I had similar experiences as you in undergrad… though my main group of people I was with were “poker enthusiasts” (to be generous).

    3. My mom had been denying the possibility of a diagnosis for years, too! It took the fact that I may NOT be able to make it in OT (just before I went through the screening process) to serve as a wake up call to her!

    Meanwhile, I am sorry to hear that you don’t really like the services that you had in the past. I had group experiences and individual experiences in terms of therapy. The group experience- I didn’t learn much, to be honest. I initially even felt embarrassed because I knew some of the participants in the group were in disbelief when they learned that I was an OT student at the time. The only thing I got out of it was that my issues are not as serious as some people. Even though it didn’t seem much, that qualified as therapeutic value… believe it or not. The individual experience- I like the fact that I have OT… not because I am biased of the field, but because my OT and I worked out game plans on situations that were meaningful to me. I used to go once a week… but now is once every month. That is considered progress because the frequency decreased and maintenance has been my goal since the start of this school year.

    If you think I can be the aspie version of the friend that you know since elementary school, I don’t mind. Depends on the situation, I may speak to you as a friend. I may speak to you as an OT. Hopefully the fact that you get to know me better can make you realize the fact that some therapists are good people, too.


Please Share Your Thoughts!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: