I was nervous about getting my autism spectrum disorder (ASD) diagnosis. What if I didn’t have an ASD at all? what then? But what if I do? Maybe I don’t want that. Maybe I just want to be normal, or at least to believe it. Is it really worth it? What will change in my life after I know?
It was a lot of money for a two-day long analysis. Is two days enough to really evaluate me? It was a LOT of money to spend on a half-assed diagnosis. But my psychologist had good reviews. She specializes in autism, including adults with autism. The latter is a difficult qualification to find. She must know a thing or two.
It would be a few years between first contacting the psychologist and actually going in for an evaluation. I was initially a 2 hour drive away and stressed at the prospect of all that driving plus a long time spent in the office. I finally made the appointment when I lived a little closer, but it was still nearly an hour drive and into the heart of downtown Denver. City driving gives me more anxiety than long distance driving.
But I had to know. I was tired of my assumed ASD being used against me by friends and family when convenient and brushed aside when not. If anyone was going to use it as a weapon, it better at least be a valid one. And then, maybe, I’d feel more confident defending myself because I knew what exactly I was defending.
I found it difficult to behave naturally during the evaluation. I was worried about any of my natural traits coming across as forced or deliberate, even though they weren’t. I didn’t want her to think I was trying one way or another. As a result, I was hyper aware of every little thing I did. By the second day I was worried that I tried so hard to not come across as autistic, that the results would be skewed the other way. But oh well. I trusted that she could see through all that. By the end, I had the impression she wasn’t going to diagnose me with an ASD. We spent so much time discussing traits I had that didn’t quite line up, more so than time spent discussing the ones that did. And yet, her final assessment was, yes, I am definitely on the spectrum. I have what would have been labeled Aspergers before it was lumped into the larger ASD diagnosis.
I felt relieved when it was over. I had the words on paper to serve as evidence of my feat. I was so proud of myself, I did it. I survived the city, and the unfamiliar environment. And I survived it twice! I am not good with multiple big events happening too close in proximity. I need a lot of down time between activities outside the home that aren’t part of my usual routine. But I was a real trooper this time.
After the novelty wore off, life went back to normal. Only, now when my ASD is used against me, I can’t reply with “you don’t know that.” But, hey, on the bright side (I thought), when people give me grief about not fitting in with standard social customs, my excuses won’t be taken so personally. Maybe this will improve my relationships, maybe now I can start making real friends. I can say I don’t feel up to going out for multiple invites in a row and it won’t be perceived as rude. Now I can decline hugs without hurting people’s feelings. Now I can say something makes me uncomfortable and people will take me seriously. Unfortunately, none of this is the case. Others only acknowledge my ASD when they can use it as an insult. Otherwise, it is the same invisible disability it was before my diagnosis.
—Please, don’t make that sound —Oh, OK sorry
—Don’t touch me there. —Ok
—this aesthetic makes me uncomfortable —*shrug*
Some time later:
—I said I don’t like that, please, don’t —OK
and later again:
—Why wont you listen!! Stop, please! —woah! Chill out! Jeez. Wait, you were being serious?? I didn’t know it was such a big deal…
Yes, it’s a big deal. These aren’t petty complaints or preferences. I get surges of adrenaline when I see or feel certain things. To make matters worse, I have mirror-touch synesthesia. I’m really not messing around when I say something bothers me. It really IS a big deal. Why won’t anyone take me seriously?
And yet, I know why. I don’t look like anything is wrong with me. I’m not physically handicapped, I don’t have the physical traits that show themselves in conjunction with other mental disorders, I don’t act particularly unusual in most settings. People expect that I can control my mind the way they expect people with depression to do the same. —Just get over it! Mind over matter…
I wish I could. Sometimes I can manage better than others. My spiritual practices have been helping immensely. Especially meditation and breathing techniques. I haven’t had a serious meltdown in several years. I have a pretty good idea of what I can handle and what I cannot, so I plan my days accordingly. But I don’t always have control over my surroundings. And I can’t just get over it.
My friends try to understand. But I don’t think they really do. I still hurt feelings. I know they are human and that theoretical understanding of my situation doesn’t change how my actions affect them. I wish it didn’t have to be like this. All I can do is spread awareness. Perhaps if enough of us share our experiences, the rest of the world will believe that they are indeed real.
I watch Girl Meets World. I’m not the only adult who does. It has a huge fan following of adults nostalgic for the old Boy Meets World. But, I have to admit that I watch kid-TV all the time, mostly Disney (#^^#)
Anyway, last night, an episode dealing with Aspergers aired. I was hoping they wouldn’t make a complete mess of things. I had a little bit of hope and some anxiety. All in all, it wasn’t bad. It addressed a few problematic pop-culture representations, but it also re-enforced others.
The character Farkle (Stuart Minkus’ son from BMW) is suspected to have an ASD. He is a genius character with some social idiosyncrasies. He fits the hollywood Aspie stereotype of genius, a little weird, but popular enough non the less. By the end of the episode, we learn that he doesn’t have an ASD after all. I like the message that being a little “weird” doesn’t necessarily indicate autism, nor does being a genius.
I am also really pleased that a female character (Isadora Smackle, who has a crush on Farkle) was revealed to have Aspergers. Females Aspies are terribly underrepresented on television and in general, so that’s progress right there.
But here is where a noted a problem. Smackle’s character has overly exaggerated Aspie traits. I know there are some Aspies that may act like her, but for the most part, I think her character was dramatized as is often necessary for character representations. We have seen Smackle before, but she has not been a regular. In order to cover something like Aspergers, and make a point in such a short time, her traits had to be exaggerated. She was so “obviously” autistic, that even Maya and Riley, who had not even heard of Aspergers before, recognized her as having it after reading a list of symptoms.
This isn’t the worse thing Disney could have done, but it increases an issue I run into as a female Aspie, that being the comment “But you don’t seem autistic to me!” As I’ve mentioned in previous posts, it is not all that unusual for a female Aspie to blend in better than a male. This isn’t always the case, and there are certainly Smackle’s in real life – but it’s an assumed stereotype that makes communicating my own situation more difficult.
In the interest of countering pop-culture, let me share with you my favorite Aspie-related youtube video: http://www.youtube.com/watch?v=5fTBM_3sdwE
Smackle ends up becoming a semi-regular character on the show and her autistic traits become a lot more nuanced. I was really happy to with her character development. It’s a shame the show was cancelled after only three seasons.
It’s the middle of August, the hottest month of the year in much of the Northern Hemisphere, and here I am asking, “where did the summer go?” Maybe it’s a side effect of capitalist enterprise and the need of retail establishments to market upcoming seasons well before they arrive, but I tend to feel like I am already in the next season well before the last one is over.
I have a habit of paying more attention to the future than to the present. My whole life revolves around what is to come while I struggle to appreciate what already is. I suppose this can be expected, considering that I am an INTJ personality type. We tend to lose sight of the trees for the forest. Whatever I have in front of me now, I perceive in light of what it will become as soon as I obtain the missing pieces (literally or figuratively). On the other hand, one of my more braggable superpowers entails the ability to notice every possible detail Sherlock-Holmes style in addition to the big picture. Perhaps this is ASD related. With Aspergers and an INTJ personality, I couldn’t be more prepared to take over the world (I hear this is what INTJs are supposed to aspire to do 😉 ).
In a strange sort of way, I often feel like I am simultaneously in the present and not there at all. I forget to smell the roses, but I notice everything. Most of the time. Sometimes I really am gone. Ok, a lot of the time I am gone. As in, not in the present tense. But I tune in often enough to catch more details than your average Joe.
Anyway, back to summer. Or maybe I should say, “back to school.” That’s the real problem here. School is starting up again. Of course it feels like summer is over. Summer is hopelessly tied with the concept of vacation and if there is no vacation going on, it can’t possibly still be summer, no matter how badly I am melting in the sun while reading Hegel.
Speaking of melting, I certainly did plenty of that this morning. Yikes, was it hot or what?! Usually, if I can get out for my run before 10am, it’s not too bad, but today reminded me that I really ought to consider an earlier running time. I have to, anyway, with my school-year schedule coming up. I started running in the later morning because the mornings were still so cold in May and June. They’ll be cooling off quite a bit again soon and I will have no choice but to run in the cold. It seems I just can’t win. I get cold really easy and I get too hot really easy too. I have Raynaud’s, so getting cold is not advisable, but I hate melting too. I need very carefully calibrated climate control for maximum productivity.
I’ll just be grateful that I haven’t had too many run ins with wasps this year. A few, but I survived. I think wasps are the number one reason that I don’t like summer. If there were no aggressive flying insects in the world, summer could be my second favorite season. Or not. We’ll never know 😉
I’ve always wanted a best friend. The kind I see on my favorite Disney Channel shows. Someone I am completely comfortable around and who accepts my need for alone time. A lot of alone time. Fortunately, I found a husband who, more or less, grants me a fair amount of solitude, and for a time I thought it was romantic to consider him my best friend. But a husband-friend isn’t quite what I had in mind.
Growing up, there were a few girls whom I called best friends, but it was in title only. They were really no more than playmates with a status slightly above acquaintance. For me, however, anything more than acquaintanceship was a big deal. Frequent moves and loss of contact (pre-internet days, you know) prevented any potential best friendship from developing further than that. I’m not entirely sure that frequent moving was the real problem though. I don’t know how to make friends. It would have required the efforts of the other party to force me into a friendship despite lack of effort on my part. I like the idea of having friends, I just don’t like the work it takes to make and keep them. The social obligations are a source of terrible anxiety.
After high school, and especially after my first four years of college, potential friends no longer fell into easy reach. Without group projects and forced encounters with people my age on a daily basis, even my acquaintances began to dwindle in number. I am in graduate school now, but I don’t have much in common with my cohorts, mostly because they are so much younger than me. People my own age are becoming mothers, I am not. That too makes things awkward. There is little common ground on which to mingle.
Recently, I have been making a fair effort to get out more. I am usually happy being alone, being left alone, tending to my own hobbies by myself, but sometimes I get to feeling the lack of people in my life. It’s a strange feeling – wanting to have people in my life but feeling crazy drained and stressed when I go looking for them. I had a good thing going on as a kid, living with my siblings and parents. There was activity around me, people to hang out with (despite the bickering and inevitable family drama) and I miss that. I miss knowing that there are people around should I need them, but being able to keep to myself most of the time. I don’t want kids of my own. I don’t want to be responsible for people. I just want to know that there are people around.
I went to a local Witches meet-up yesterday night. The conversation was lively and the people were friendly. But I don’t know them. I don’t know how to get to know them. I am terrible at keeping a conversation going and even worse at small talk. There wasn’t much room for individual socialization during the meet-up itself since it was a focused-topic conversation, but people gathered to converse post-meet-up and I don’t know how to do that. It is discouraging for me to consider how much small talk I would have to suffer in order to come across one of “my people.” Sure, a group of Witches is a start. We have at least one thing in common. But that isn’t enough. Just one night out for me takes a huge toll on my mental well-being. It would take an eternity to form a bond of substance by this method, considering how much down time I need in between events.
Going out for me isn’t like it is (or seems to be) for the average neurotypical extrovert. I don’t just think, “hey I’m bored, I think I’ll go out tonight.” No, it’s not like that at all. Going out is a painstakingly planned event. I need at least a few days notice. I need to prepare myself mentally, to consider all the possible sources of stress at the particular location to which I am going and to prepare accordingly.
Once I’m at my destination, I have fun. It’s not like the entire process is a chore. It’s the before and after that cause issue. When I get home from any social event (ranging from a small few-person event to a crowded dance club), I get the same sense of relief that I do taking off high heels or a corset. I get home and feel like I can breath again.
I’ve heard rumor that Aspies are not necessarily introverts. I wonder what it’s like for an extroverted Aspie. Is their situation more or less stressful than mine? I imagine they are the sort who socialize without abandon, not caring if the other person is interested. Or maybe that’s not how it is. I don’t really know. I just know that I am introverted and autistic, which makes a poor combination for making friends.
Although the odds are against me, I’m trying my best to be a part of the world. Even if I never form any real friendships, at least I won’t look back on my life with regret for not trying.
Asperger’s wasn’t well known when I was growing up, but even if it was, it’s possible that I would have remained undiagnosed.
Aspie females tend to be better than males at blending in and mimicking proper behaviors. But this skill takes time to develop. As a young child, I freely and unashamedly displayed autistic behaviors. Nevertheless, these behaviors were not as show-stopping as they would have been had I been a boy. More often than not, young female Aspies obsess over topics appropriate for their age and gender, wheres the boys tend to pick out more eccentric interests. Also, so I have read, boys will be more aggressive when stressed.
As far as parents are concerned, if you maintain good grades and don’t cause them undo stress, they are likely to accept all manner of quirks without being too terribly concerned. The only thing they were ever concerned about was my lack of social skills. But these, they thought, they could handle without outside help.
So what does a female Aspie’s childhood look like? Again, we are all different, but perhaps some common threads can be found.
Let’s start at the beginning.
Before my own conscious memory begins, one of my parents favorite stories to tell is about me and dryer sheets. You know those obnoxiously-fragrant and chemical-laden sheets some people like to stick in the dryer with their clothes? Apparently, as a baby, I wasn’t so offended by them. Perhaps I played with used ones, I don’t know. Anyhow, I used to entertain myself for a long time tearing these sheets up into tiny bits and arranging the pieces neatly on the floor. I didn’t eat them. I didn’t hide them all over the house. No, I just lined them up meticulously on the carpet. I’m pretty sure my parents considered my ability to self-entertain without wrecking the house to be a miracle rather than a reason to worry.
And so, much of my childhood progressed like this. I’d find something to hyper focus on for long hours and leave my parents alone. For a while, it was watching the color portion of The Wizard of Oz over and over and over again. In fact, today, my mother laughs at herself for not considering this to be a strange thing. In hindsight, she and my father agree that I was one strange kid.
When I wasn’t watching The Wizard of Oz, I was on my rocking horse.
It was similar to this one:
My mother probably has pictures, but I can’t find one that looks exactly like it online. It was a spring rocking horse that made sounds, but I don’t think I had batteries in it very often.
I rode this thing obsessively. For hours. Until I got too big for it and it broke. I think my parents got me a replacement once, but finally, they had to tell me to say good bye to rocking horses. This was sad. Very very sad.
So what next? I recall that My Little Ponies came next. Yep, I loved My Little ponies. I hated playing with other people though. By now, my parents began encouraging me to get out more and play with other kids. Ugh, I hated being told to go outside or to meet the new neighbors. But most of all, I hated playing imaginative games with toys or dolls with them. My father sometimes tried to play ponies with me. I was never amused. He’d do stupid things, like put a nasty old boot of his on the floor and say it’s a monster attacking. This made me so mad!! Incidentally, my youngest sister appreciates my father’s play style and she actually begged him to play with her all the time. Too bad she wasn’t born sooner to distract him from bothering me. lol. But it wasn’t so bad. My father was usually too busy with work to interfere often. When left to my own, I preferred to arrange my ponies into a static scene and stare at them for a long time, complimenting myself for a job well done, sometimes even imagining up the things they were doing, but not moving them around.
I had barbies too, but I never liked them as much as my ponies. The most attention the barbies got was getting dressed up and arranged on the stair-case shelves in my closet. Sometimes, I would rearrange them, or redress them, but their only purpose was to remain in an orderly way. I suppose you could say that of the ponies too, but there was more imaginative process that went into their arrangements – and they weren’t sentenced to long periods in the closet.
Eventually, I outgrew ponies. I never outgrew love of collecting them, but arranging them into elaborate scenes on the floor lost its appeal. So I found something else to occupy myself with and that was Michael Jackson.
An aside here: notice that none of my interests were peculiar, only obsessive. Becoming a fangirl too wasn’t particularly strange either, until you look into the exact nature of my fan-girling
I had identified as a fan of MJ since the age of four, when my grandmother introduced me to him via MTV. She always had MTV on at her house and I was always at her house.
But it wasn’t until I was 9 that the obsession began. I collected anything and everything even remotely related to the King of Pop. Books, documentaries, tabloids, cassette tapes. I kept a journal to collect trivia about him and eventually, I’m pretty sure that I knew more about him than he did himself. Most of my family probably ended up knowing more than they cared too because this is all I talked about. I’m not kidding. I even sometimes bothered people outside my family with it because I thought it to be a suitable ice breaker in awkward social situations.
I got myself a fedora. I wore it to school all the time. Fortunately, MJ was still popular enough that I avoided too much bullying for it, but there was still a bit of mockery here and there.
That about covers my most significant obsessions as a child, but there were an assortment of lesser interests and quirks as well. I can’t even remember them all, but my parents tell me sometimes.
I remember loving to trace my hand and spend the greater portion of an afternoon filling it in with tiny dots. I used to pretend that it was armageddon or some terrible event and all the little dot people needed to get onto the hand-shaped spaceship if they wanted to live. When the space began to fill up, I got nervous for my countless dot-friends. I felt relieved for each one that found a space.
I also read a lot. I’d read until it got dark and I’d be too involved in the book to get up and turn on the light. My parents would usually show up to turn the light on for me. I carried a book around with me everywhere and insisted on reading at the dinner table even if I was told not to. I could read before I started school having been mostly self-taught. My mother tells me I used to come to her and ask her what a letter was from time to time (I don’t really remember this).
In school, I excelled in everything except social studies. I hated social studies. I didn’t do bad, but I wasn’t a teachers pet the way I always had been in math class. My parents tried to have me skipped a grade on more than one occasion, but the school didn’t allow it because of my lacking social skills and common sense. Apparently, I took a test on which I did well in every category except common sense. I don’t remember this test. My fourth grade class was a mixed 4/5th classroom and my teacher allowed me to skip the 4th grade math textbook. Unfortunately, the school didn’t allow me access to 6th grade math the next year so I did 5th grade math again. I finally got to skip a grade after I was homeschool for one year. I skipped 8th grade.
I could probably write a short novel on all my childhood characteristics, but I think you get the idea. I didn’t cause anyone trouble and my interests were in the normal-sphere besides being obsessive. Only my social skills were lacking. And, boy were they ever. I came across as pretty rude at times. I am embarrassed to think of some of the things I did and said as a kid. But at the time, I had no clue that I was being inappropriate. One odd social moment isn’t too embarrassing to share: My mother was late dropping me off to preschool one day. The kids were already sitting in a circle singing a song. I walked to the circle as if I knew exactly what I was doing, sat in the middle, and didn’t sing. My mother asked me about this and I told her that I was supposed to sit there because the kids were singing to me. haha. After all, at the time, I fully believed that I was a fairy princess, so why wouldn’t they be singing to me?
On that note, I’ll end this post here. 🙂
In the past, I have been hesitant to admit that I have an ASD. Despite that diagnoses for it have been going up in recent years, it is still misunderstood and riddled with negative stereotypes. Aspergers (now diagnosed as part of the larger spectrum rather than its own thing) is popularly associated with sociopathic behaviors. At best, NTs pass it off as an imaginary condition. If I’m not a sociopath, I’m just looking for an excuse for poor social etiquette, apparently.
I grew up with no idea that I may be autistic. Besides being a very strange little girl, I kept out of trouble. My brother stole the show back in the day for his hyperactivity and poor grades. He was diagnosed ADHD and received all sorts of special assistance and medication. Meanwhile, I spent most of my childhood in my room, engaged in peculiar activities, but generally staying out of notorious limelight. Sometimes, my parents would reprimand me for staying in my room too often or I would get in trouble for being rude to other kids. But Aspergers wasn’t well known at the time, and being a bit strange isn’t as much a burden to parents as unleashing Dennis-the-Menace stye havoc all over the place.
Believe it or not, my brother grew up to be the most mellow guy you’d ever meet. I’d hardly believe he was the same person if I didn’t know better. As for myself, I began to amass more attention the older I got. Being strange as a kid can be passed off as a phase, but into adulthood, it loses its appeal as a cute-curiosity. Once my family learned of the existence of Aspergers, they suggested I, as well as a few male members of my family, including my brother, might have it. I considered the possibility, but it didn’t change anything. I carried on about my life, certain that there was still time to “grow out of” my issues. However, as I tried to enter the professional world, my quirks got in the way. More than one person asked me upfront if I’m an Aspie. I was also told that “my type” wasn’t wanted in the teacher training program that I was in at the time.
These armchair diagnoses are peculiar considering that most people I have told since my diagnosis are shocked to find out. They tell me they would have never guessed. Of course, I really like to believe that I have overcome many of my previous social obstacles.
I eventually took myself to have a psychological evaluation because I finally just wanted to know. During my evaluation, I got the impression that I wasn’t going to get an ASD diagnosis. In fact, I was entirely expecting an OCD, anxiety, and/or sensory processing disorder diagnoses instead. But nope. She said I am definitely on the spectrum. I also received a separate diagnoses for anxiety, but she said everything I suspected was OCD is really part of my ASD.
Well, so, now what? Does this mean that I can let go of all my progress and learned behaviors in order to have a free-for-all autistic experience? Of course not! It means only that I understand myself better as I continue on my journey to self-improvement. Sure, some aspects of life may be more difficult for me than an NT, but that doesn’t excuse me from anything.
And just so we are especially clear, I’m not a sociopath. An evil genius, yes. But my plans to take over the world are morally sound (more or less 😉 ) and don’t involve violence.