Diagnosis and all that Jazz . . . A Female Perspective on Autism

I am a 20 year-old aspergian who was just diagnosed early last summer. I didn’t know anything about autism until a few months before my diagnosis. I’d heard of it, of course, but did I know what it was? Not really. I’ll admit that I was always under the impression that autism was a debilitating disease, made famous by its drooling, blank eyed poster children who don’t speak and do nothing but cause heart ache for everyone around them.

Since my diagnosis a little over a year ago, I’ve immersed myself in the world of autism. Before joining the ranks I had no idea it was such a large community, filled with its fair share of politics and drama.

Over the past year I’ve been to several conferences and autism events, and I’ve met countless individuals on the spectrum. Meeting other autistic people was a huge breakthrough moment for me. It finally clicked that yes, I belong here; I am one of you. I in no way believe diagnosis to be necessary for everyone, but it definitely helped me. Before my diagnosis I was constantly worried that I wasn’t really on the spectrum, something was just “wrong” with me. What if I were a neurotypical? What if I were just broken? All these things I can’t do, all these quirks, what if it’s my fault? Meeting other autistics was what really erased my doubts about myself. One of the things I first observed about the people I met was the apparently stark difference between those with more pronounced symptoms (commonly referred to as “low functioning,” whatever that means) and myself. And yet we are not so different.

To an outside observer it would appear that someone like me is nothing like those further along the spectrum. I pride myself in my ability to imitate the speech tone and inflection, body posture, gesticulation and facial expressions of “neurotypicals” (though I hate that term; no one is truly “NT” in my opinion), whereas many people who can’t appear to be much more noticeably “autistic”. Lack of tonal variation, expression, and body language, combined with things like stimming and verbal tics, make many autistics stand out from the crowd, so to speak. This is one reason people like me (“high functioning” autistics, aspergians, or whatever term you want to use) often go undiagnosed.

However, autism really is a spectrum deal, and it took meeting others on the spectrum for me to really understand that. Many of the traits that are thought of as classic “low-functioning” autism are traits that I share. I “stim” quite a bit, though I save the obvious stuff like hand flapping for when I’m alone at home, or stopped at a red light in my car. Anyone who’s spent time around me knows that I can’t help cracking my knuckles, playing with my hands, rubbing my palms up and down my thighs, or squinting my eyes tightly and blowing air out my nose. The squeaky wheel gets the grease, and public hand flapping, or spontaneous moaning and squeaking noises draw more attention.

And even though I am able to imitate inflection and expression, there’s a substantial difference between my communication and the communication of someone who the autistic community would call an “NT.” I didn’t even fully recognize this myself until going to autism events, and seeing the few NTs amongst those with ASD. The difference is truly astonishing.

There’s a sort of flow that accompanies NT speech that even the most practiced autistic seems to lack. Voice, facial expression, body posture and gesticulation are all smoothly integrated, and seemingly as unconscious as coughing when food gets caught in the wrong pipe. Watching two NTs having a conversation is like watching a well-acted film, or listening to a perfectly practiced orchestra. There’s a noticeable rhythm, an ebb and flow, that can’t be faked. There are no breaks in the conversation, at least not the kind that accompany an autistic conversation; there are no hesitations to calculate cause and effect of an action. There’s still plenty of “um” and “er,” but it’s a difference that simply can’t be captured in a blog post

I know that body language and facial expression, etc, are all obvious parts of communication, but I’m using only language here because I feel that language is a more substantial.

I’ve read over and over that non-verbal cues are “98% of communication” but personally I think that’s bunk. If that were the case, deaf people wouldn’t need sign language, and Ariel would have been able to woo Prince Eric no problem. Perhaps it’s just because I don’t think much about non-verbal cues, so I don’t consider them essential. Perhaps it’s because I’d like to think that I’m not only picking up on 2% of what people are saying to me.

But being diagnosed was exactly what I needed to begin my journey to adapting and managing my symptoms. In this day and age my soul searching was made incredibly easy by the vast number of books seemingly written about me! As an autistic individual, I have a very difficult time knowing not only how to fix my problems, but what they are in the first place. I had no idea that my body language was wrong. I didn’t realize my voice was monotone; I’d never listened!

Post-diagnosis, I put my aspergian ability to research obsessively to good use. I’ve read many books, articles and studies on autism. I’ve read up on sensory difficulties, emotional regulation, and manners. I’ve memorized a full body language dictionary, and learned more than I ever knew existed about the nuances of feet direction and eye contact. Now I know that playing with my hair can be construed as flirtatious, and standing with my arms crossed makes me look anti-social.

Now that I have the ability to recognize my difficulties and the tools to fix them, I am far more socially competent than I ever was before learning about autism. I used to be the stereotypical awkward misfit, never wearing the right clothes or acting the right way. I had no idea how to comfort a crying friend, or how to maintain a romantic relationship. I had no idea that there were people (and books) that could teach me, or that I was capable of learning!

And again, this has nothing to do with the route of official vs. unofficial diagnosis, and everything to do with self-discovery. If you fit the criteria, if you identify with the autism community, if you feel in your heart that you are autistic, you don’t need a doctor to tell you about yourself what you already know. The tools to help you are out there, and these days all you need is Google.