How I Self-Diagnosed ASD: Part 1

Diagnosis can be complicated subject for people with ASD. Unless your parents caught it while you were still a child, the chances are good that you're undiagnosed. I have heard of adults getting late diagnoses as well - it's not unheard of - but ASD is by definition a developmental disorder, which means that insurance companies tend to have little to gain by supporting the pursuance of an adult diagnosis. Why? Because adults rarely need the sorts of things diagnosed children receive, such as occupational therapy for motor skills. For adults, it's often a case of getting tested, getting the diagnosis, and walking away. 

Then, add in the process of finding a competent autism specialist, especially one that knows what the disorder looks like in adults. That issue is even further compounded if you happen to be female. Most research done into ASD was conducted on largely male groups, and it's only recently that research has begun on how ASD can present differently in women. 

With these difficulties in mind, it's not much of a surprise that a lot of adults don't pursue a formal diagnosis that could cost somewhere around $2,000. Many of us function well enough in day-to-day life that our disorder escaped the notice of parents and teachers, after all. So the "point" of seeking a diagnosis becomes something intangible: being able to "close the case," or a sense of validation, or having a professional's opinion to take to your mom so that she might actually believe you when you tell her you're autistic. For a lot of people, that's just not worth the hassle and the price tag.

I am one of those people. I would love to get a formal diagnosis, but I don't have the money or mental capacity to handle the undertaking right now. So, here I am, relying on my self-diagnosis. I am often a little leery of boldly claiming (especially to people in person!) that I'm autistic, even though I've been researching and meditating on the diagnosis for four years now, and I'm almost completely certain of my own assessment. Self-doubt is insidious. 

So, let's talk a bit more about diagnosing one's self. The best place to start is the DSM-V, which is conveniently simple to understand, if a tad bit on the long side.  This is just the first part.

"Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers."

(Taken from https://www.cdc.gov/ncbddd/autism/hcp-dsm.html).

Let's start nice and easy with the first paragraph of that. The lack of social ability has to be persistent, meaning not just problems here and there. It has to be present in multiple contexts, which are detailed in the three subpoints. To be diagnosed, you have to have difficulty with all three areas. These difficulties can be established with current problems or from problems in your history. I think it's nice that that's in there, since adults have usually figured out a lot of coping mechanisms in order to blend in.

Let's talk about subpoint #1. It sounds fancy at first, but the examples help clear it up. Essentially, there's a sort of disconnect between you and others in verbal communication. I spent most of middle school and high school agonizing over my apparent inability to talk to the other girls in my youth group. The way they were able to group up and talk back and forth so easily was (and honestly, still is) a complete mystery to me. I didn't understand how to go about approaching a group and figuring out if I was welcome or not. I didn't understand how to introduce myself to strangers. I didn't understand how people made friends. My mom always told me "ask questions! Be yourself!" and that advice was completely lost on me. I didn't see the point in asking the sorts of mundane questions I could think of, because I already knew most of the answers or was sure I'd only come across as painfully childish asking what they liked to do in their free time. And the idea of "being myself" was such a conundrum of it's own back then, because my concept of self changed depending on the context. Like many teenagers, I had no idea who I really was.

So this is how most of my visits to youth group went. I'd arrive on time, but hide in the bathroom for five or ten minutes until I was certain that the game portion was over. I'd sneak in right as everyone was standing up to sing - thinking I'd be less noticeable coming in than when everyone was still sitting. During the twenty minute break, I would sit by myself, ensuring I looked engrossed enough with a slice of pizza to avoid drawing anyone who might take pity on me because I was sitting alone (again). I'd wait for my small group leader to come talk to me, because she was an adult and the only person in the entire room I felt moderately comfortable with. A lot of Sundays, she was the only reason I mustered up the courage to go at all. That, and the insistence of my mom. Later on in high school, I volunteered to operate the soundboard, and so had a very convenient reason not to get involved in group games and instead sit by myself tucked away in a dark corner. It was a lot less stressful than sitting alone in the main seating area, keeping an eye on everyone around me. Those were the good days.

My secondary small group leader once told me that I came across as unapproachable, and I was actually a little bit happy about that, because it saved me the pain of trying to get through conversations that I didn't know how to handle.

And of course, there's the fact that at my homeschooler co-op, I was so painfully awkward and quiet than my sister's friends asked her if there was something wrong with me.

I guess in retrospect, that's one way to look at it. The fact that my peers noticed I was very different continues to be one piece of evidence I find impossible to ignore.

Alright, now what about #2? This deals with nonverbal communication. It will either be completely missing from someone with ASD, or it won't match what that person is actually feeling or verbally communicating (at least, until they're started learning about it consciously). 

As a teenager, I figured out (with the help of the internet) that standing around with my hands on my hips or my arms crossed came off as stand-offish at best and aggressive at worst. I read a few quick blurbs on body language, and saw that you could put your thumbs in your pockets or lean to one side on a surface to appear open. I was still able to rest my hands and arms the way I wanted to, without looking like a jerk. I adapted my body language to appear more friendly, consciously, and it didn't happen without external influence.

Additionally, I am often asked if I'm alright when I'm perfectly content, minding my own business. Apparently something in my face tells people I'm sad or angry, when in reality I'm perfectly peaceful in my own little world. I laughed it off as RBF for years. Recently I read about "blunted effect" and realized that was the likely explanation for why my sister feels the constant need to check on my emotional state. My subconscious expression isn't reflecting what I'm feeling.

Eye contact is something that gets talked about a lot, too. I don't know how much I struggled with it, but I do remember making a conscious effort to make eye contact with people once I hit about fifteen. I think I probably unnerved one of my teachers a few times, because I was so focused on making sure I met his eyes that I spent the entire hour and half lesson intensely staring at him. I more recently came across a guide, of sorts, to how much eye contact was appropriate - defined in length, and detailing when and where to look away in order to create a comfortable break - and wondered "where has this been my entire life?!" I was honestly tempted to write up a quiz and study the thing so I could begin practicing it. (I still might).

All three of these things show that nonverbal communication doesn't come naturally to me. It's something I've consciously worked on over years of self-reflection and exposure to handy tips on Pinterest.

Number three seems the clearest to me. Do you have problems making friends or maintaining those friendships? I already covered in detail how successful I was at socializing during my teen years, which I think is plenty evidence in and of itself. I had a handful of friends during adolescence, usually just one or two at a time. Am I still friends with any of them? No. Our friendships ended as soon as someone moved away, or someone left the church, or left my co-op, or we went away to college. I thought I was somehow cursed to never have a lasting friendship; now I realize that those friendships weren't very deep and couldn't survive simple obstacles such as a lack of proximity.  The only one that might have survived, I let go when I went to college and was faced with the first signs of disagreement and, in my mind, judgement from her. I can't deny that at the very least, I was largely responsible for that friendship's failure.

I can count my current friends on one hand - five, exactly, not counting my husband. That's more than I've had at one time in my entire life. Of the five, I expect two to stand up to the test of time, because we've been through enough together that we should always have something to talk about, even if it's been months since we last talked. The rest I expect to eventually fall victim to my usual pattern of fading friendships (even if I can't explain why it happens, aside from some mutual struggles with communicating over long distances), and I'm actually alright with it at this point. I've gotten used to it.

Those friends were made either online (another topic for another time) or by forced proximity via work or my husband. I can claim very little credit for initiating anything, so I think it's safe to say I struggle with relationships.

That covers the first part of the DSM-V criteria. If you have continuing difficulties in all three of these areas (verbal communication, nonverbal communication, and creating or sustaining relationships), you're halfway there. There's another section to the criteria, which is a little bit more flexible. I'll go over that in the next post, and then I might write a third installment to talk about smaller symptoms of ASD that aren't necessarily covered in the DSM-V. 

If you're wondering about autism, hopefully this helps. I know it's helpful for me to write out the "evidence" for my self-diagnosis because it gives me the confidence to tentatively talk about this with people I could really use a few small accommodations or understanding from, such as my family.  I do still believe formal diagnoses can be helpful for adults, but until that becomes practical for me... I'll just write so many lists and essays filled with collected evidences that people will have a hard time arguing with me.

Feel free to share your opinions, thoughts, and experiences below!

How I Self-Diagnosed ASD: Part 2.