The Autism Diagnosis Quest – Part 1

There may be many adults out there who may have self-diagnosed, taken quizzes online, had suspicions or may have even talked to people on the spectrum and questioned themselves. Before I begin my own story, I want to say this.

If you are autistic or believe you are on the spectrum, the diagnosis is only as important as you make it to be. If you are wanting to seek therapy for emotions you may feel related to this, sometimes the diagnosis may be necessary to receive treatment, as for some reason (at least in the United States), insurance companies will not cover treatment without some sheet of paper confirming your own instincts or suspicions. This particular set of stories on our site will hopefully provide information on receiving a diagnosis if that is what you need to seek any external treatment, therapy or even closure, as I myself did.

To start, I am not insured. That is not because of any fault; I simply can’t afford it, not even plans with a reduced price. But on top of that, I’m not a guy who gets sick too often, and when I do, I take care of myself. (My kids are covered through a federal health plan though called CHIP.) Oddly enough, you may find this to not be a factor. Many mental health services in the US are either barely covered by insurance (30% of less) and some places I have found are “self-pay” only, meaning that insurance is not accepted and that you pay large amounts (and I mean large) out of pocket for a long and drawn-out process that will eventually end to a diagnosis, ultimately of course to lead you to more treatment.

I came to discover I was autistic sometime in 2011. I had suspicions about my son (who was diagnosed a while later) and my sister herself is an autistic person, what some would call “nonverbal.” My nephew is also autistic. He communicates well, albeit differently, and has very specific quirks like wanting to open and close doors. I remember reading John Elder Robison’s Look Me in the Eye, which is an adult’s retrospective on discovering he was autistic. He also did not find out until later in life.

I remember sitting there, reading the book, hearing a recording of Air on the G-String by Johann Sebastian Bach, rather dramatically, reading this and how he himself scanned the symptoms from a psychiatric journal and found out something new about himself.

I have always felt like I belonged on another planet. In grade school, I didn’t click well with other kids and had stims constantly, like clicking my heels together randomly, walking sideways down the hall. I also used to walk in circles constantly, later listening to music as a teenager, and even wore down paths in my yard. It looked like crop circles.

I had particularly large social anxieties in high school and used to hide either in classrooms in the dark at lunch or I would hide in the theater. The Glenn D. Reeves Fine Arts Center was one of my all-time favorite places to disappear. My theater teacher, Mrs. Moerbe, knew my sister because she had been in technical theater. So she knew me and knew I didn’t have the best life at home. So I hid there. She was fine with it. She was a great teacher. I also space off. I did in German class and despite this, aced the class constantly. My teacher, Frau Phillips, put up a sign there saying “Welkommen zu Gusland!” where I would always stare. From what I hear, it was up still, years later. She found my awkwardness endearing as well.

And I talk to myself. Still do. You might think this a sort of mumbling or something. But I watch videotapes of myself at work. I have FULL CONVERSATIONS with myself. I am talking full blown, arm movements, talking to an invisible person. These episodes have gotten more profound when I get more stressed. I also have troubles with communication and eye contact.

Thank you, theatre and speech class. I learned “stage eyes,” the art of looking at the audience without looking them in the eyes. I have mastered this. I also learned to project my voice well (a good autism utility) so even when not looking at people, they can hear me clearly. So I don’t come off as rude (I hope), just awkward. Some find it charming. Especially my wife.

I am in a constant state of daydream. I don’t know if it’s synesthesia or not. But when I hear music I see clear pictures in my head. No matter what song. I also make noises every time I hear music, involuntarily. I stim with my hands, sometimes still gallop and my wife says I make a high pitched noise when I am excited. Since I used to listen to death metal at high volume, it must be out of my aural range. I also always have ideas. About weird things I never have anything to do with and never will, but still ideas. They are always there, like a beehive in my head.

And my hyperfocuses are unbreakable. One of them has always been music. I remember once, when I worked at a pizza place, I wrote a piece of music using a daily dispatch performance report. I have no idea what the piece of paper was besides a lot of numbers. I assigned each number a noise, digits 0 through 9, and made loops by arranging the sounds according to the numbers. Symbols were effects like speeding up and slowing down or reversing. It’s pretty berserk and I named it, of course, Daily Dispatch Performance Report. Warning: it is almost unlistenable. I am also obsessed with Chinghis Khan, and have been since I was a kid. I wrote a song about him too (and I now know it’s history is quite inaccurate.) That one is a bit easier on the ears.

So I was scared of a diagnosis for some time. Part of it was seeing how my older nonverbal sister was treated. I also saw my nephew treated differently. And some people are just plain rude to them. At a birthday party, my nephew touched some light up decoration and was screamed at by a neurotypical father. My stepfather had to hold his anger at the big prick about it while he took my mother and nephew home. My sister was ridiculed in high school. When my other older sister was there, she would hear girls make fun of her and call her names. She would point to her and say “Hey, that’s my sister.”

And when they laughed, she would respond “I’m gonna kick your ass if you talk about her again.” So needless to say, my older sister took lots of trips to the principal.

Raz, my son, is really special. Maybe I say that because I am his dad, but he is. He didn’t really talk until he was 4 or 5. But when he was talking, he knew what the fastest animal on Earth was without me teaching him (it’s the peregrine falcon, by the way, and he told a wildlife rescuer that fact very loudly.) I also was a late talker, and my first words to read were Red Rooster Lumber Company.

Raz would build spiderwebs. He would take yarn and build these massive traps through his room and the house. My wife would build him obstacle courses to wear him down through the day. I also wrestle with him. He mostly wins. But the more I saw in him – hyperfocuses, the delayed speech, sensory triggers, meltdowns, sleeplessness – the more I realized about myself and how much me and him had in common.

My wife questioned why it was so important to me and why we needed to pay someone to make people believe us. I don’t claim disability and do not plan to do so. I have a full time career. I have enough experience that I could probably walk into something decent if I wanted. I have a gorgeous wife who totally gets me. I have beautiful children.

But I don’t really have a lot of friends. I just don’t make them. It’s nothing personal. I’m just hard to socialize with when you meet me. Once I get out of my shell or on a topic I like, I go nuts. But I take more effort than most want to give. Unless alcohol is involved, but needing that all the time is no way to live. I had seen what alcohol did to my dad and to my stepmother’s liver.

My first step I found was finding out my job had something called an EAP – Employee Assistance Program. They offered so many counseling sessions a year and I figured they could help. So a few years after my suspicions, I decided to try and confirm them. This will go through my odyssey.

And I encourage you to share your own.

 

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