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 need to rant for a bit. I try not to do so too often, but I’m just so frustrated and someone has to know.
I got a part time job. Nothing glamorous and it pays barely anything, but it’s something to bring in a few extra bucks while my husband is looking for a better job.
Anyway, I needed to get some appropriate clothing to wear for work, so I went shopping. I hate shopping. Especially clothing shopping. I don’t mind window shopping or some non-clothing shopping. It’s easier to bear if I’m with people – but sometimes that too can add to my stress. Malls are the worst for me. I like them for a short while. I like the small gift shops and fun trinkets all around, but I hate the non-stop social interaction. Clothing stores are the worst – sales people talking to me the minute I walk in. Ugh, I can’t take it! Go away, don’t talk to me. **Please,** people. I try not to make eye contact. I make wide arcs around every sales person, but they come after me anyway. Apparently Aspies aren’t the only ones who misses social queues :/. I can usually handle about three, maybe four (on a good day) clothing store interactions. After this, I tend to become visibly stressed. I am a passive person for the most part and don’t like to stir up trouble, but when I’m at my social-interaction limit, my responses can become curt and sometimes rude. I don’t mean to be rude. I’ve been known to return to a store before leaving the mall to apologize to anyone I might have been so with.
For some reason, malls give me the most trouble. I can put on the neurotypical act for a long time in many other settings. I have been praised for having the best customer service skills in most of my jobs. I’m not even kidding. I’ve had people ask for me by name because I’m the “friendly one.” Something about the mall just puts me on a borderline meltdown mode as soon as I walk in.
When my husband is with me, he keeps the sales people away whenever he can. However, he doesn’t mind being rude right away. He’s not a terribly friendly person to people outside his own circle. He is rude because he just doesn’t like people. The people aren’t my problem. I love people and I hate it when I do anything to offend someone I don’t know. I am not annoyed at the salespeople so much as stressed around them. I start panicking and I can easily get a headache within 15 minutes if pressured into too much conversation.
I prepare myself in advance for trips to the mall. I get plenty of rest the night before. I don’t do anything else stressful before leaving. On a good day, I can make it into all of the clothing shops provided the conversations are limited to a quick “hi, how are you?” If they keep talking after my “fine, thank you,” my anxiety sets in.
At the mall today, I went to Maurices first. The salesperson there wouldn’t leave me alone! It was the creepiest thing! She started with the customary “how are you?” and the conversation progresses as follows:
me: “I’m good, thanks”
her: “did you work to day?”
me: (I freeze up as I struggle to make sense of a question out of the usual context – does she think I work there?) I hesitantly answer, “no,” and try to ignore her.
her: “Oh, so you got the day off!?”
me: (feeling really out of my element. I didn’t practice for this. It’s not the usual small talk. what do I do??) I nod and give a half nervous smile. What business is it of hers anyway if I worked, if I even work at all? seriously, what was her deal???
her: “oh fun, so you are here to shop till you drop?!”
me: “uh, i guess. but I really don’t like shopping” she gives me a concerned “oh?” and I say, “I don’t like a lot of things that most people like, but I have to shop sometimes.” A stupid reply, really, but I had no idea what to say and I wanted to figure out how to get away from this situation without coming across as rude. I walk away from her again and avoid eye contact. She notices me look at a table of jeggings.
her: “so you’re here looking for something particular then?? some jeggings”
me: “no, I’m just looking,” I say as I hurry to the other end of the store. Another stupid reply considering my previous comment about not liking to shop – but again, what business is it of hers?
I stalled before most of my replies, really confused about how to answer. I’m pretty sure the panic was showing on my face by my final reply, but I made my way to the exit before she could say anything else.
So, wonderful, I was in the mall not even 10 minutes and already stressed. Fan-freaking-tastic.
Perhaps we should move on now to *why* I was even in the mall. There are other places to buy clothing. The mall isn’t even close by – it’s a 30min drive. It certainly wasn’t my first choice. My first choice was the Kohl’s that is a couple blocks away from me. A large, mostly quiet store, close to home – perfect! I don’t need anything fancy, just some black pants. Any black pants. All my black pants are jeggings. In that entire store, and trust me, I went through every single folded pile and rack of black pants, there was only ONE size 2 in the women’s section. ONE. Ugh, no surprise really. I shop in the juniors department a lot. I don’t mind most of the time, but at 33, I should really be able to shop with the rest of the grown-ups. I don’t like low rise jeans, and though I can usually find something that works for me in the juniors, it takes ~a lot~ of trying on because nothing is consistent in junior’s sizing. The pants might be made for people of my general size, but not for a fully grown woman’s hip and butt. Usually, if I can find size 2 in the adult women’s department, it will fit. More dependable, yet so much harder to find. And for heavens sake, I am an adult! Sometimes I want adult fashions, especially for work. Yes, I know there are young-adult shops for the early 20s crowd. That’s why I ended up going to the mall. But in the average department store, I can shop in the tween/teen section or not at all, pretty much. I didn’t go in there with a mind to be picky. Honestly, I was desperate enough to take ANYthing that fit. There was plenty of “my size” in the junior’s department, but the fit was off as it so often is unless I can find high rise pants. I found one nice pair of pants in the juniors department that I loved. Only one like it. Turns out it’s not a brand they sell. It was an erroneous return and I couldn’t keep it 😦
I went home with the only pair of size 2 for grown-ups in the entire store. A tacky pair of straight leg pants with a hem slightly too short for me. As I picked them up off the shelf, I gazed at the pictures above of adult women who are probably a size 0 modeling the pants that seem to begin, for the most part at sizes 4 or 8 in the store. What in the world is up with that? I remember some time ago being in a store and asking if a particular item came in size 2 and they said yes, but they don’t stock size 2, so it’s order-only.
So many of my more voluptuous acquaintances lament that I am so lucky because shopping must be easy. Oh people. The grass is not greener anywhere else. Really, it isn’t.
Well, so, I suffered a trip to the mall. I found plenty of skinny jeans and jeggings. Most non skinny black pants are either excessively dressy or don’t exist. Why do all the bootcut and flare style pants only come in blue denim these days? But, believe it or not, I found the most perfect pair of black flare bottom pants. I love them so much, you have NO idea. And, they were the only pair left in the store. I could have bought at least twenty size 4s and a store full of size 13s, but there was only one size 2. 😦 They were on clearance and the cashier said they are probably discontinued. I went online and found them, also on clearance, though not as cheap as in-store. It said “only a few left!” when I clicked on my size. I added four to my online cart and paid for them. Now I’m hoping I don’t get the dreaded “we cancelled your order” email I get when online inventory isn’t up to date. I really really hope I get my order. Please, everyone, hope for me too! I don’t want to go to the mall again . (´;︵;`)
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.
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.