Today is October 3, 2015. I am 32 years old. Today, I start on the journey of seeking an Asperger’s diagnosis.
I have always been an 'odd duck': quirky, eccentric, weird. From childhood, my family chalked it up to a high IQ, and low common sense. No street smarts. In adulthood, some have even requested that I be evaluated professionally. (For the record, I’ve been to three separate psychologists/psychiatrists, and they all agree that, while I have generalized anxiety disorder, I am not bipolar, delusional, schizophrenic, etc). I have always ‘not quite fit in’. I remember asking a friend in junior high why the kids picked on me, what did I do differently? She couldn’t explain why, but just said that I made myself a target. I accepted it. It was… not ok, but… whatever. That vague non-claimed emotion of non-fulfillment, un-named existence. Because it just WAS.
I have been married for 11 years, and have two beautiful children. My husband loves me, and has supported me for the entirety of our relationship. But all of our marriage, he has fended off questions regarding my maturity, responsibility, ambition. When would I get a job? When would I start acting like a normal adult? When would I stop freaking out about things that [they thought] didn't matter? Why was I such a slob? Why am I so disorganized? Why can I not just have a conversation? Why, basically, am I such a pain in the ass.
Then I met this group of women. A wonderful, remarkable, inspirational, and sanity saving group of women. We talked for hours, at odd hours of the night, as we bonded over our newborns. I knew that some of our group were diagnosed with Asperger’s, or high functioning autism. I accepted it, I mean, the world takes lots of people, but I moved on. It didn’t really mean anything to me, so I discarded this as useless information. It stuck in the back of my mind though. These women showed me that there really was a world beyond what I had known, something I had begun to doubt. They were my best friends, my sisters, and my mothers. I yearned to be closer, and yet feared the rejection I was sure to experience once they met me.
Then I met a local mom, who has several children, two of them the same age as my own. We had similar interests (cloth diapering, babywearing, and kids ages). Some of her kids were on the spectrum, had sensory issues, and more. Her oldest, however, ‘clicked’ with me instantly. It was as if I was talking to a younger version of me, a window into my past self, but not. I was able to understand exactly her meltdowns. Her fits. Her tantrums. Her obsessions. Her aversions. We could talk, and it was easy. Not in that way where people pretend to tolerate you, and later you find out they were exhausted by your tediousness, but in the way where someone really likes what you do. We had different interests, but the way we talked about them was the same. Her mom started me asking me why she did things, because I could explain it. When she told me that her daughter was on the spectrum, it opened my eyes.
So I got curious, and began to do what I do best. I read. Articles, blogs, stories, forums, reports, quizzes, anything I could get my hands on. These things didn’t apply at all!!
Then I learned about Female Aspect Asperger’s. And something clicked. It made sense. It was that feeling -of home, belonging, explanation- that I had been missing, but searching for. I had found the missing explanation of my life. I could understand WHY I stuck out. I could understand WHY I had a target on my back in school. Why so many times my parents and my husband were angry with me after social events, incredulous that I didn't understand the trouble or discomfort I had caused others. It just explained SO MUCH.
The next couple months were conflicting. I tried to explain this wondrous revelation to friends, my family, my husband, but none of them understood. They all believed that I was trying to find some way of ‘being different’, making excuses, or getting attention, etc. But Asperger’s just FIT. My husband, daughter, and I took tests over and over and over again. Not 5, 10 or even 25 question tests. Tests that took hours. I begged them to take them repeatedly, begging the results to change, to prove that it DIDN'T fit, to prove them right. The most hilarious results occurred when my husband took a test for me, marking every answer that applied, in a way that HE thought would get me a neurotypical (read: normal) result. It was my highest 'Aspie' score. So we (I) took a step back, and really evaluated our lives. Our arguments. Our disagreements. We realized, on top of the obvious social issues, interests, pickiness, etc, that I am much more literal than I appear. I use sarcasm with the best, but understanding sarcasm or dry humor? Nope. I answer rhetorical questions. Like, ALL THE TIME. As in, it is the cause of most of my fights with my husband. Apparently I read obvious facial expressions, but other than that? Nope. Can't do people and names either, unless I have known them a while, seen them frequently, or something memorable happened when we met. The more, and more, and more we looked, observed, and were unbiased, the more the signs became clear. Things that made me look crazy, actually had a rational foundation, a real explanation.
Imagine, if you will, that psychology follows a linear diagnostic checklist:
Cyclical moods, depression, hyperactivity, spending issues, promiscuity? Bipolar disorder.
Isolation, fatigue, body aches, headaches, disinterest, suicidal tendencies, rage? Depression.
Stress, panic attacks, sleeplessness, fatigue? Generalized anxiety.
The list goes on. A person could fit many of these, but not enough for any to be a real diagnosis. But you know what Asperger’s is? Asperger’s isn’t linear. Because it isn't psychological. It is neurological, and infinitely more complicated and varied. Asperger's is like one of the back wheels of a girl's faded pink banana bike, back in the 80’s. The back tire has the normal spokes of the wheel, but on those spokes are beads. Aspergers is the wheel, and the symptoms are the beads. The wheel encompasses 'linear' psychology, and the beads are each a different symptom. But many people are lacking the wheel. So they see these scattered psychological symptoms, and doctor’s try, in vain, to diagnose and ineffectively treat according to these symptoms. I was one of these. Many of my ‘difficulties’ in life showed up on these linear checklists. Not enough to diagnose me definitively, but not enough to say I was ‘normal’, or even functioning.
The Asperger’s wheel, however, makes it all make sense.
It explains it ALL. Not one eccentricity is left to wonder at. Not a single one. Each and every ‘interest’ now makes sense. The social anxiety. The chattiness (read, conversation monopolization). The 'know-it-all' reputation. The total CRAP conversation skills (although apparently I excel at lecturing). The fingerspelling, and hand motions, that I do hide at my side. The reading at 18 months, and devouring 6th grade chapter books at 6 years old, many in under an hour. The jokes, rhetorical questions, insinuations, sarcasm, facial expressions, mood changes, etc that seem to go right over my head. I DO get idioms, metaphors, etc, but I can actually confess that I researched them in my teens, along with old fairy tales, mythology, and the correlation between society and their horror stories (legit senior research paper in high school). I am extremely inappropriate in conversation, between the jokes, the questions, asking the wrong questions. I've lost friends, invites, and more because of that actually.
But now I live with this fear. I am so afraid that they will tell me that nope, I’m not an aspie. That really I’m an oddball, that just can’t figure it out. Someone who is really just that clueless, or desperate, or cold and calculating. I am afraid that this ‘home’, this puzzle I’ve unlocked will really be ripped away, and I'll be back out in the cold. That I'll be crazy.
So I’m writing this. Because I don’t talk to anyone about this. My family is simultaneously sick of hearing it, and they don’t believe me. My friends….. some who know think it is a cry for attention. (Some, those with kids on the spectrum, think it's a done deal) My village, from whom I draw such strength? I fear so badly that I will alienate them with my… oddities… that I have not truly discussed this in this way. I can't hide who I am, even with self-editing that makes me seem so much MORE normal online, my oddities shine through. But I have stopped asking the obvious questions, the nagging questions. So I'm writing here, because I need the outlet.
But it is time to be an adult. I am now in a position socially where my eccentricities are going to be forefront and noticeable. Knowing how often I'm told that I embarrass myself, or act badly, this leadership role makes me highly anxious, and I worry constantly about how I am speaking to people, which makes me tired and cranky. So it is time to find out if this is really why I am so different from others. Because then I can say honestly, “I have Asperger’s. I’m not crazy, and I don’t always understand if you are angry, curious, or sarcastic, and I don’t usually know when I’m overstepping. But please, tell me when I am, I’ll be ok with that. Just don’t be mad at me for something I can’t seem to learn to fix. I’m not crazy, I’m just different.”
And hopefully, maybe, I can finally grow up.
*this was written before being published.
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