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 1^st 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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