In the Future I will Be

My stupid words bypassed the usually very good filter between my brain and my mouth today and I ended up unintentionally saying something uselessly cruel to R. We talked it through and things are fine between us and I’m glad.

But I also hate myself.

My words have hurt people before. Its a literal hallmark of Asperger’s Syndrome. I say things and people have emotional reactions to them that I did not intend to create nor do I understand and sometimes can’t even correct. I’ve been told by more than one person on more than one occasion that I am “cold, cruel, unfeeling” when I had no idea why they would think that of me.

The only thing I absolutely hate about being autistic is communication failures. It seems so easy for other people to talk to and understand each other. I see it happen every day. I know that there are miscommunications all the time but it seems so easy for others to say what they mean. I have a hard time understanding people some times and I’m okay with that. Its a part my autism and I can deal. If people think I’m stupid or a bit slow because I need them to repeat themselves several times that’s okay. If they get annoyed with me for needing specific written instructions that’s just a little stone life lobs at me. When I say something and people look at me like I’m from another planet well its something I can live with. If I have to rephrase myself several times before people understand me well enough to get the gist I’m all right. Its a pain but it can be done. And if all spoken communication fails then I can always write it down. I’m much better on the page than I am in person. Emails and text messages are great for that.

What I can’t stand is that my words hurt the people that I care about. I relax around them because I trust them and feel comfortable with them. This results in my careful brain-to-mouth filters relaxing too. Most of the time nothing happens but some times something from my brain makes it through my mouth unfiltered. Maybe I said something wrong and/or maybe the other person interpreted it wrong. Maybe I said something that sounded mean but had no malicious intent. It doesn’t really matter. Because now I’m in a hurricane of emotion. The people that I’m close to know me and we work it out just fine in the end because we both want to put the effort into our relationship. They know me. They give me a chance to explain, to rephrase, to qualify. And we patch it up like always.

But then comes the memories. Those from before I knew what it was that I was hurting people with. Before I realized how it could even happen or that my words had any effect on others at all. It reminds me of all the friends that suddenly wouldn’t talk to me anymore because I was mean. It takes me back to never having a partner for group projects cause the other kids didn’t like me. And sitting at the end of the lunch table with a group of kids huddled away from me because they didn’t want me to feel I could join in.

When was I mean? How was I mean? I wasn’t mean….right?

But its hard for someone to understand that you literally have no idea how what you said effected them. We are a wordy species. The ability to communicate is the hallmark of homo sapiens. The pinnacle of our evolution. To fail at it so utterly is to be in effect inhuman. To be unhuman. To be alien. And if you don’t know you’re autistic, like I didn’t back then, then what are you? Where did you come from? Why are you here? Is it always going to be like this?

I randomly found an old school assignment in some boxes when my family moved house several years back. Some of them were mine. One was a paper that listened goals, dreams, hopes, etc we had for the future. From the date I figured out that the assignment was from the end of my 3rd grade year. The very last statement was “In the future I will be” followed by a blank spot. I had written “a doctor”. But my first response, which I had erased, was still barely visible. I wouldn’t have noticed it if I hadn’t been sitting so close to an intense light source. I could see my first response. And it speaks to the fact that at the age of eight I understood what I didn’t understand. My response spoke to my understanding of what my future was going to hold. It spoke to the fact that I knew was fundamentally faulty in some manner than I could neither grasp, understand, or fix. To a loneliness I was too young to feel in its entirety and a hint of the bitterness and contempt that I would later feel toward others. It spoke to the long road ahead that has left me pitted and scared and with a hatred for myself that I now, thankfully, rarely feel.

My original reponse was “alone”.

“In the future I will be alone”.

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You are always on my mind (and I hate you)

There is a voice in everyone’s head that tells us we are terrible, unworthy, useless. It says things that we don’t want to think about. Its louder in some people than others I think. Usually its called self-doubt or negative thinking or negative self thought or catastrophic thinking. My voice is very loud and I gave it a name a long time ago. Usually I just call it The Imp but sometimes I call it Asmodeus. For those that don’t know Asmodeus is a king demon mostly mentioned in the Book of Tobit.

For clarification I don’t believe a demon is talking to me in my head. Its just that the thoughts I have sometimes are so polar to view of myself that I (at the point that I named it) could not believe these were my own thoughts. The Imp started talking a long time ago. For as long as I can remember I have had these thoughts that I do not want to have. I named The Imp when I was a small child. My mom used to work overnight as a book keeper for several years. I used to worry that something terrible would happen to her because she would be out in the dark.

My worry was validated by my dad and my grandmother telling me (and my siblings) about the dangers of being outside AT NIGHT. Terrible crimes happened AT NIGHT. Children were kidnapped AT NIGHT. Robberies happened AT NIGHT. Murder happened AT NIGHT. Rape happened AT NIGHT. Doors must be locked and checked AT NIGHT to keep the bad people and things outside.

My mom should not be outside AT NIGHT. In order to keep her safe I used to make precise grids of marbles over and over again until she got home. I didn’t sleep much as a kid so I had a lot of time to make grids. I also had a lot of marbles. If the marbles were too close together or too far apart in a row or column I would have to start over again. If I could get it perfect then I could stop. At least until I started worrying again. I very rarely got the grid perfect. My gross and fine motor skills were very underdeveloped and marbles are tricky things in the glow of a flashlight. Also the number of marbles, rows, and columns needed often changed. So there I was under the bed or in the closet making row after row usually until my mom got home. I could put the marbles away after she came inside and locked the door. She would peek in on us kids but it wasn’t uncommon for me not to be in my bed. Sometimes I pretended to be asleep under the bed and other times I would give my mom a hug and welcome her home. Sometimes I would make her a sandwich so she could have a snack before going to sleep. My mom was troubled by my being bright eyed at 5 am when she got home but there was little she could do. I had never had a great need for sleep and she had learned long ago that if I were left to my own devices with a flashlight and books and my toys I would not wake anyone who needed sleep. She was glad I think sometimes that I was there to greet her when she got home. She worked a lot back then and there was little to see for it. I think she was very lonely and I know for a fact she worried.

She worried about my brother’s asthma and how to pay for his meds. She worried about the cars breaking down. She worried about the toilet that would either never stop running or would remain clogged for weeks. She worried about my grandfather (her dad) who was then a full blown alcoholic in the hellish throes of untreated PTSD. She worried about the cells in her breasts and if one would ever decide to turn against her one day, leaving her four children half orphans as her own mother’s had done. She worried about the bills. And I know she worried, worried, worried about me. I was such a strange child and why did I vomit so often? What if something were terribly wrong with me and the doctors just didn’t know what yet? And why was I so different from my siblings?

I swore in my heart that I would never, ever, ever tell her how afraid I was almost all the time. What could be done about it? I swore I would never, ever, ever tell her about the marble grids. What if she took my talismans away? I swore I would NEVER, EVER, EVER tell her about the terrible thoughts in my head. I did tell her, not very long ago in fact, about my secret nightly rituals and a little bit of how terribly often I was afraid as a child. But I have NEVER, EVER, EVER told anyone about the terrible, terrible thoughts in my head. And so the awful things The Imp would yell or whisper or chortle at me stayed right there in my head.

The Imp because much worse after puberty, not uncommon in women with any kind of disorder or illness. For about three years I was convinced I was a psychopath. I did all kinds of research about psychopaths. My parents had long since stopped monitoring what I read and I was very good at keep things secret. It was during this time that we got the Internet (alas AOL). One of the first things I learned to do was delete the history. So why was I convinced I was a psychopath? Well, I didn’t have feelings. Or at least that’s what people told me. Lots of people. Teachers even. I was cold and detached. I had no friends. I was a loner.

I knew all these things but that wasn’t why I was pretty sure I was a psychopath. It was the thoughts I named The Imp that convinced me. You see the awful, terrible thing I never told anyone was that The Imp didn’t just tell me terrible things were going to happen if I didn’t advert them. The Imp told me I wanted to do terrible things. I wanted to stab my teacher in the hand with a pencil. I wanted to push my sister out of a moving car. I wanted to force my brother to have an asthma attack and watch him suffocate. I wanted to stab my beloved dog with the sharp knives from the kitchen. I wanted to set my house on fire with my family in it and watch them all burn. I wanted to kill random people I saw in the grocery store. And I would like it. In fact I would LOVE to do these things. I would do them all and I would never be caught because, as my research told me, women were very rarely ever psychopaths. Or at least murderous ones. I would do them all and I would ENJOY it.

These days I know that the proper label for The Imp is intrusive thoughts. Intrusive thoughts are the defining characteristic of Obsessive Compulsive Disorder. My particular flavor (sub-type) of OCD is Harm OCD. I have intrusive thoughts of a harming/violent nature (the obsession) and the response I engage in to alleviate the discomfort of these thoughts (the compulsion). I have thoughts of hurting the people and animals I live with. I have thoughts about hurting complete strangers. I worry that I could unknowingly do something or fail to do something that results in someone being hurt. I worry that I don’t find these thoughts disturbing enough. I worry that I enjoy what The Imp tells me.

I have told doctors and my friend R about some of my intrusive thoughts but not the worst of them. Lately my anxiety has been worse. A change in meds has helped but my depression has been worse. But worse than that my intrusive thoughts have been so much worse. I had to stop playing with my goddaughter and leave the room because I became convinced that if I remained in the room with her I would hurt or somehow “infect” her, thereby harming her. When R asked about my sudden departure, I lied saying I had a bad stomach cramps which I eventually did end up having as a result of the emotional upset my intrusive thoughts cause. I have thought about hurting our sweet, sweet dogs because they shouldn’t love me as I am a terrible person and they just don’t know it yet. But they will once I have hurt them. I have thoughts about hurting my youngest goddaughter, an infant who cannot defend herself. And I want to hurt someone so that everyone will know just how aberrant I am and they will lock me away where I can’t hurt anyone ever again. And maybe then, finally then, the thoughts will stop.

But I don’t hurt anyone. And I am not insane. I am not a psychopath. If I were these thoughts wouldn’t bother me. I wouldn’t engage in the compulsive behaviors because I would feel no distress. I had this belief, this delusion, that if I told someone they would hate me because who couldn’t hate something as vicious as me? Who wouldn’t stare at horror in the fullness of my violent thoughts and fear me?

But last night I told R and here I am now. I am not a murderer. I am not violent. I do not want to hurt anyone. The Imp talks and laughs and dances. It tells me terrible things and I perform a mental ritual to take away the distress. But The Imp is not real. The thoughts I have are not representative of me. The more I try not to have them the harder they are to ignore. If you have these thoughts tell someone. Don’t suffer alone. This terrible secret has a name and can be treated.

OCD can cause suicide. OCD also kills in small measures, taking a little piece of you with every intrusive thought. Get help. Get support. Get education. Get an advocate. The Imp is not right. The Imp is not the truth.

Look here for some excellent articles:

ocdla.com

Harm OCD: Symptoms and Treatment

Feelings

I’ve been having a lot of feelings lately. And I don’t like it. I haven’t always had feelings. Or at the very least the ones I had weren’t very complicated or intense. It wasn’t until I was 13 or 14 that I realized people had feelings. I had always assumed that everyone was empty like me. I started to suddenly experience emotions around the age of sixteen. I’m not a neurologist but I assume emotions just don’t suddenly turn on like a light bulb. But mostly I just remember psychosomatic reactions instead of feelings previous to this emotional awakening. I didn’t feel angry, my stomach hurt. I wasn’t frustrated, I had a headache. I wasn’t scared, I had diarrhea. Then emotions came on strong around the time I had more than one friend who had more than one friend. I remember feeling like everyone else’s friendships had something that they didn’t have with me. I was dismayed and jealous and confused but couldn’t logic it out so I just put the whole subject in the bin. Then I went into my first major depressive episode and my emotions went away again.

My second major depressive episode is in remission and I have been depression free for nearly 14 months. I’ve had a lot of feelings in that span of time and they are exhausting. I can’t understand how people function with emotions all the time. How are they even still alive? Most of the time I wish I didn’t have emotions. Or that I wasn’t as aware of them. I’m more aware of my emotions now than I have ever been but I understand them no better than I did when I was a teenager. I’m 31 years old and I don’t know what to do when I’m sad, or lonley, or anxious. Most of the time I don’t even know why I’m experiencing any of those things.

Generally, R has always told me what I’m feeling and what I should do about it. She’s been doing this since we were teens. In return I’ve always redirected her when her ADHD leads her stray. R has grown as person and is a wife and mother and I’m a 31 year old with the emotional intelligence of a second grader. Before R had kids I’d go to her, say something like “I feel bad”, and boom! R does her emotional magic. She’d figure out what I was feeling, some possible reasons for that feeling(s), and some functional plans to help me process the feeling(s) and move on. Rarely was she ever wrong. Maybe because we’ve known each other for so long (and in no small part because we were both more than willing to be in a codependent relationship) R usually figures out fairly quickly what’s going on with me emotionally. She does it (I think) by taking my emotions and making them her own and I know that’s not healthy for either of us. It was just easy and it made sense.

But R has kids now and neither of us wants to our relationship to be codependent again. She can’t be my emotional Sherlock Holmes cause she needs to be teaching her 2 year old daughter how to deal with her feelings and not her 31 year old autistic friend. I don’t want to be a burden to her anymore than I can help so I’m stuck with my own stupid emotions and I hate them. I want them to jump back into whatever Pandora’s box I unwittingly let them out of and leave me the hell alone. And, contrary to popular media portrayal, the medications I take don’t medicate my emotions away. They just get rid of the self destructive extremes.

And to make things more complicated I have emotions about my emotions. I’m afraid to feel any level of sadness because for me sadness only comes in one flavor: depression. So I’m afraid to feel sad but then I feel stupid for being afraid because my 2 year old goddaughter can handle being sad. Then I feel like I should accept how I feel because my feelings are valid dammit and eventually the noise in my head becomes so loud I start to have a panic attack. Then I take my medication and hide in my room with the lights off for several hours, willing my heart rate to go back to something that feels like it won’t kill me. And I still have the psychosomatic reactions too. Fevers, blinding headaches, blurred vision, selective mutism, stomach cramps and pains, heart burn, hives, vomiting, diarrhea, and asthmatic attacks. They resolve and/or can be medicated away but the core problem remains.

I don’t know what to do with my feels. My culture and family have taught me to medicate my feelings with food. Its hardly a surprise that as I’ve become more aware of my feelings my weight has steadily increased. i found myself finally able to verbally articulate this dilemma (my mouth is a notorious traitor) during the dying embers of my disastrous attempt at graduate school. I told all of this to the head of the psychological services center, a psychologist with over 30 years experience and more research papers to his name than any person should physically be able to write. With my file in his lap, he looked at me over the rims of his glasses (me red faced and sucking on my rescue inhaler) and intoned, “Wow. It sounds like you have some kind of emotional disorder. Have you tried Zoloft?”

I think filling out the mountains of paperwork required and going to his office reaching out for help was my last desperate attempt to salvage my graduate school education. He was unmoved and I guess I gave up. Agoraphobia became queen of the kingdom and I lost my financial aid, my job, and finally my apartment. (Side note: I’m not sure why agoraphobia is female but it/she is.) Because of course I had been on Zoloft. It was in the file he was holding on his lap. The file he was supposed to have read. I loved Zoloft. i was at my most functional on Zoloft. I graduated college with the help of Zoloft. But it stopped working as those kinds of drugs sometimes do.

But I didn’t really give up, I don’t think. I just ran out of resources to give. Everything kept taking form me and I had nothing left to give. So I slipped back into hypersomnia, selective mutism, and eventually depression held sway over all. The winter of my discontent came and my feelings went into hibernation.

It is now the summer of my mental state and my emotions are ready to run amok. They’re like undergrads in Cancun, drunk on their own sense of importance and always read to overreact.

Today’s emotional overreaction: self hatred.

Why?

Because I couldn’t go to lunch at a restaurant. The thought of it made me have a panic attack and I stayed home. Not a new scenario for me. It happens fairly often. I don’t like loud, noisy, crowded places. I know this, R knows this, and anyone who will listen knows this. Its my thing. But today it is making me hate myself. I can’t do something as simple and commonplace as have lunch in a restaurant. What the hell is wrong with me?

Stupid, pointless, useless emotions.

Being Diagnosed with Autism and Psychological Comorbidities

I thought I’d focus on my being diagnosed with autism and comorbid conditions. Comorbid conditions are common with a diagnosis of autism. Comorbidities are the simultaneous presence of two chronic diseases or conditions in a patient. There are many conditions that are commonly diagnosed with autism. I’ll focus on a few of my psychological comorbidities in this post.

As it got closer to my high school graduation I started to change in ways I didn’t understand. I started having trouble falling asleep at night because i was gripped by a paralyzing fear that something terrible was going to happen to my family. A break-in where the robbers were going to kill all the witnesses. My mom and my two sisters raped. My baby brothers tortured and mutilated. My brain told me that if I stayed awake this disaster scenario would be avoided. So I stayed awake. After awhile the solution to preventing my nightmare changed. If I checked all the windows during the daytime and then the doors three times at night everything would be okay. Eventually that fear changed too. The nightmare scenario no longer haunted me but leaving the house for any reason but going to school filled me with a deep dread. I stopped going over to my friend S’s house which was something I’d done nearly every day for almost two years. She would invite me but I wasn’t feeling well. Stomach pain, vomiting, and diarrhea (not new to me) happened with a new frequency. I couldn’t trust my body.

But that was okay. I didn’t feel like eating. All I really wanted to do was sleep. When I got up in the morning for school I would get dressed, put my hair up, and lay back down until my mom called for me to get in the car. I went to school and then back home. At home I laid down down on the closet floor in my room and just stayed there. Sometimes I slept, mostly I didn’t. I converted oxygen into carbon dioxide. My memories from that time period are very vague. I know a long time schoolmate told me that I had changed and wasn’t my usual self. I knew it to be true but didn’t really care.

Shortly before I graduated we moved from my childhood home. I began having these attacks of intense fear. I would feel overly hot, sweat, shake. My heart would race and race, hammering in my chest. I would struggle to breath, experience numbness and tingling in my extremities, and was convinced i could not survive this terror. That my hear would give out. Sometimes I would cry uncontrollably during these attacks. Sometimes I’d cry after and occasionally I wouldn’t cry at all. Usually I’d fall into a deep sleep when the storm had passed. I graduated high school but didn’t leave for college. I was too scared. Scared of new places and new people. Too scared to leave my family. I started at a local community college a year after I graduated from high school. Two years later I left for university.

I had always been an anxious kid. I “came from a family of worriers” I was often told. I was a “worry wart”. I thought too much, spent too much time inside my head. I needed to try harder to think positively.

Rubbish, bunk, and nonsense.

How were you supposed to get out of your head? How do you stop thinking? Try harder? I had to force myself to walk in a crowd, to get to a classroom. The courage it took to raise my hand to participate left me mentally and physically exhausted. How much harder could I try? I barely had anything left and still had to go to work. And while we’re at it, what did I have to be sad about? People have it much harder than me after all.

Cheer up, toughen up, think positively damn you!

I knew I had had a major depressive episode. I knew I had an anxiety disorder. But my family and my culture see mental illness in black and white. You are either crazy or you aren’t trying hard enough. You’re wallowing. You’re feeling sorry for yourself. You aren’t trying hard enough!

My depression returned my first lonely semester at university. But thing were different now. The student health center was across the street from my dorm building and the counseling center a short walk away. After several days of interviews and testing I was diagnosed with Asperger’s Syndrome, panic disorder with agoraphobia, major depressive disorder, generalized anxiety disorder, and a math learning disorder (more on that one later).

I met the majority of diagnostic criteria for Asperger’s Syndrome. I display a marked impairment in facial expressions and in maintaining proper nonverbal behaviors. I fail to develop appropriate peer relationships and lack social and emotional reciprocity. I adhere to inflexible schedules of specific, nonfunctional routines. I have an intense need for sameness and consistency. I have several repetitive mannerisms, such as rocking when seated and standing. My developmental history clearly showed restricted social and emotional abilities, inadequate communication skills, uneven cognitive abilities, and an excessive and/or abnormal on special interests. My rate and tone of speech are often flat. I avoid making eye contact. I often display a significant lack of affect.

Autism all around, that’s me.

Be not afraid

Got a call from my Mum today. She has this way of telling me bad news. She asks how I’ve been, listens, and sighs heavily when I finish. That’s how I know its going to be bad news. I don’t often pick up on social/emotional ques but Mum is a creature of habit (like the rest of my family). Its nice (in a way) to know that bad news is coming before its said.

My grandmother has (probably) less than a year to live. She’s 85 years old and for the last ten years or so her health has been failing. Its only been in the last five years that she’s begun to actively die. It started with a heart attack that led to a stroke that lead to her losing sight in one eye and experience full body muscle weakness. She has low blood pressure and osteoporosis. The osteoporosis leads to abnormally high levels of calcium in her blood which is not just bad for her bones but also her heart. Three years ago she was diagnosed with a kind of cancer of the blood. The only way she will ever be cancer free is if she has a bone marrow transplant but she wouldn’t survive such a harsh procedure. Her heart muscles are atrophied and her heart is actively leaking blood. A pace maker could be put in but it would only stop sudden cardiac arrest. It wouldn’t really solve any problems. It might extend her life but no one can say for sure. She doesn’t want to have the surgery and I respect her decision.

My grandmother has been a fixture in my life since the day I was born. I was very jaundiced at birth and had to be put in a light box immediately. No one could hold me. My grandma prayed and sang to me. Both my parents worked long hours and if me and my siblings weren’t at school we were at my grandmother’s house. When we’re sick she gives us Sprite and eggs and refried beans. Tortillas were her specialty. Her tamales were a Christmas treat I looked forward to all year. Spanish rice, picadillo, and conchas overflowed at her house. She’d bring home a peppermint for each of us when she came home from work. She never forgot and she never miscounted. She was the first person in my life to respect my food sensitivities. She’d make my portion without onions. It took a few minutes more but it wasn’t a burden for her. She knew what I liked to eat. She would challenge me to try new things.

“Try a bite mijita,” she would instruct. “If you don’t like it I make you some eggs.”

Sometimes I liked it. Sometimes she’d make me eggs. She never got mad at me for being a “picky eater”. As long as I tried and didn’t waste food in her house everything was okay with her. As long as I was eating I was healthy.

“Jita,” she would say. “Don’t shake your hands at the table. You’ll get food on the floor.”

No yelling about quiet hands. Just a direction and a very logical reason for it.

“Jita,” she would say. “You need to listen at school. You need a high school diploma to go to college and I want to see you walk the stage.”

I was still mad at my teachers and confused by my classmates but Grandma wanted to see me on my special day. So I learned to put up with it.

“Mijita, when others are mean to you show them your beautiful smile,” she instructed.”They want you to be mad or sad. If you smile you confuse them. Then you come tell Grandma about your hurt.”

And it worked. Bullies stop picking on you if you just don’t care. I would tell Grandma if I was hurt or mad at their words. And it would be okay because Grandma loves me. And Grandma would always love me. There are so many of us (me and my siblings) but she had a way of talking to you that made you feel like you were the only one in the world. Because to her, you were. There was no other granddaughter like me and she thanked God for me every day. My birthday is in December but she would always buy me two presents. Because my birthday was as special as everyone else. Sometimes she would buy me a small one person cake. it would have reindeer and Christmas trees on top. It was my little cake. Just for me. Only for me. And she always remembered my favorite was chocolate.

When I left for college she was sad and scared. But she smiled and cheered me on. I was going to get my degree, the first in my family. She prayed to Jesus that my “school mind” would be open and that the library would be too. The first time I came home from university I went to visit her as usual. She looked so much smaller than I remember. So much weaker, so much sicker. For the first time I realized that my grandmother was going to die. That one day she simply wouldn’t be there anymore. I was so sick with the knowledge that I could hardly stand to look at her. My grandmother had been strong her entire life. She raised her sons alone after my good-for-nothing grandfather abandoned his family. In a time when women had no voice she and her sister worked menial jobs to buy their own home. Any obstacle could be overcome with hard work. Everyone had a skill that was special and could be used. Everyone’s life was important because they are a child of God.

She is a very, very religious woman, my grandma. Pious and as true a believer as there ever was. But her belief was never a weapon. She never tried to put the “fear of God” into any of us. Not even the time I nearly burned her house down. She just reminded us that God loved us. She wanted us all to be Catholics but she loved us no less if we never joined the church. She prayed her rosary quietly while we would nap when we were young. She thanked God for each of us by name. We were the sum of all her prayers, her reward for faithfulness, and proof, if only to her, of the loving God she leaned upon.

I joined the Catholic church in my early twenties. It is a fact that surprises many as I am generally logical and rational and religious beliefs tend not to be. Grandma brought me to the church. I saw the peace and joy it brought her. I saw the comfort religious beliefs could bring. I hoped to find that for myself and I very much did. My faith wavers often but that is just the nature of the thing.

My grandmother faces death with a serene smile. She is comforted by the love of God and His promise. She has lived all her life to be able to go home to His Kingdom and knows that the family members who have gone before her wait for her there.

I want her to go there. I know that she is tired of being in pain and she is tired of being sick. She is tried of hospitals and doctors and needles and pills. I want her to be at peace. Much of who I am today is because of her. Much of the peace I find in my life is because she so patiently taught me how to get there. She has always accepted me exactly for who I am. I have never been strange or weird or tiring to her. I have always been her Janna and I always will be.

I just really, really wish she could stay here with me always. Because I’m not done needing her to remind me that I’m perfect and wonderful and that I am a precious gift from God. I’m not done being her granddaughter. I don’t want her to go. But I know she’ll be waiting for me.

People First Language

All throughout my college education the importance of people first language was pushed heavily. For those unfamiliar with the concept people first language is pretty simple. Instead of saying the autistic boy you should say the boy with autism. The idea is that the person is more than just their diagnosis.

When working with the ABA company, I disclosed my diagnosis to my supervisor. “I’m autistic,” I said. She tut-tutted me and said that I needed to use person first language. I replied that when speaking of a client I would always use person first language but when speaking for myself I would refer to myself as autistic. Because I am. Autism is a pervasive developmental disorder. It is always with me because it is me. Its in my brain and my sensory organs and every interaction I will ever have with anyone or anything. That’s not to say that my autism dictates every aspect of my life but it certainly does have a large voting share.

Other people have told me that I’m so much more than  my autism and identifying myself mainly as an autistic person belittles everything I’ve accomplished. I don’t understand that at all. Doesn’t it make everything I’ve accomplished more important? I am autistic and I graduated from college. I’m autistic and I have worked various jobs. It shows that people (defined by their disability or not) can do much much more than most people expect.

I am able to speak for myself and therefore able to advocate for myself. I am an autistic person and a person with autism. However I refer to myself is the manner in which I see myself. Everyone has the right to self identification. I respect everyone’s right to self identify. Tell me how you want to be addressed and I’ll address you that way (within reason cause my brother came up with some pretty funny and pretty profane self identifications just to challenge me). For a person with a disability who cannot advocate for themselves I will always use first person language. I will follow how a parent identifies their child. I will gladly explain my reasons for referring to myself as autistic because it is my choice and my identification.

And no. You can’t argue with me. Its not an opinion. Its my choice. So be polite and accept it.

Quick Note

Asperger’s Syndrome (AS) as a diagnosis was not included in the DSM-5. Instead the current diagnosis would be Autistic Spectrum Disorder (ASD). I’ll use the terms Asperger’s and autism interchangeably in this blog. The diagnostic differences for the two can be very thin at times or very stark depending on the individual. In my case I just consider myself to be autistic. Hopefully this won’t cause any confusion.

The Three Whys (of my autism)

Why do I have autism? When I was diagnosed I never asked myself that question. From what I knew about autism (and what I’ve learned since) the cause of autism is partial genetics and mostly still unknown. It is a neurobiological disorder that definitely has a genetic component but what that component is exactly isn’t known. Studies have found anatomical differences in the brains of some individuals with autism but by no means all people with autism. Brain scans have found differences in the way the brain of an individual with autism reacts to certain stimuli but this is a correlation. Causation is not found in any of these studies. Like any disorder that effects the mind the why of autism is bound to be incredibly complex. I am the only person in my large immediate family with a diagnosis of autism but I am not the only one to display autistic characteristics. Looking at my family objectively, I can identify traits of autism in my father, two of my brothers, and two of my great aunts (my Dad’s aunts). My father grew up in a generation where a diagnosis would only have been made for someone with a very profound mental disability. Someone like my Dad who was successful in school and never a behavioral problem wouldn’t have drawn attention. My brothers were probably never identified for the same reasons. They both had excellent grades and never caused any problems. Both of my great aunts come from a background of profound poverty. Neither of them went beyond junior high and when they were young the most profoundly disabled were hidden away and forgotten about. The elder of my great aunts was born in 1922. We’d come a long way by the time I began attending school in the 1990’s.

I got good grades in school but I caused a lot of problems. I had a pathological need for routine and sameness. Any deviation from the norm lead me into a spiral of panic and anger. I had psychical and verbal stims. I still do but trial and error has taught me when and where not to engage in them. I have sensory issues. Certain things, like sand, are intolerable to touch for me. Touching denim is worse than having teeth pulled. I see the rapid flickering in florescent lights that some do not. I can also here the constant buzz all florescent lights make. I can’t not hear it. I’m sensitive to change in temperature. My  kindergarten teacher described me as “aloof; distant; struggles with social skills”. In the first grade I was referred to the school counselor. A report she gave my parents states that I had an “odd manner of speech”. I was “socially immature, inflexible, and naive”. My speech was so delayed that my Mom took me to the pediatrician. He assured her that I was fine and need to be encouraged to talk more. So many, many signs.

So why was I not diagnosed until my 20’s? Part of the reason is that Asperger’s Syndrome wasn’t recognized as a diagnosis in the United States until 1994. I was ten years old by then. Another part was the fact that, like ADHD, autism was a boy’s disorder. Girls with autism were extremely rare and displayed severe intellectual disability and most often engaged in dangerous self injurious behavior. I was reading at a college level in the third grade and kept my mild SIB a secret. One of my earliest memories is my Mom telling me that she never knew when I was happy because I never smiled. So, being logical and practical, I practiced smiling in front of a mirror and reminded myself to smile whenever someone around me smiled. Everyone loves a smile. Basically I learned to adapt. I loved to read and always made sure to have a book with me at all times. If you’re reading people rarely interrupt you. If people didn’t interrupt me then I wouldn’t have to struggle with social situations. When you’re a girl who is very quiet everyone seems to see you as very polite. I couldn’t upset anyone by saying something bizarre or rude if I never spoke. I knew that I was different and that something about me was very, very “wrong”. So I learned to hide it. I compensated. I did my best not to stick out. My grandmother drilled into me how to speak politely to an adult and I used that script, improving on it when necessary. If I daydreamed in class, well, that was hardly a problem with my grades.

So that leaves the third why. Why me? I’ve never asked myself that question either. When I was diagnosed I was incredibly happy. Finally a name for and a description of this thing I had always known was there. I was autistic from my very beginning. From the womb to the tomb, yo. I have never not been autistic. I have had parents ask me “Why my child?” My immediate, but never spoken, answer is “Doesn’t matter.” To me it truly doesn’t and I find it hard to understand why it would. If a child is nonverbal, aggressive, and/or engages in dangerous behaviors like elopement or severe self injury I guess a parent would want an answer more concrete than “genetics…mostly.” I will never be a parent because I know that I lack the capacity to be a competent one so I guess I’ll never be in the position to ask that question. There was never a time in which I have not been autistic. It was no surprise to me and my diagnosis caused me no pain and much joy. But I lived with my autism for 21 years. The only thing that had changed for me was this thing had a name. I do want to understand though. When I work with a child with autism I am working with their family too. If any parents read this I’d love to hear from you.

Socalizing

Everyone has their strengths and weakness. With me the things I’m good at I’m spooky good at. The things I’m bad at I’m miserably bad at. There is no in-between or gray area when it comes to my skills. It is black or white. This is very common in pervasive developmental disorders and was one of the defining characteristics in testing that would lead to my diagnosis.

I’m good with technology. My dad has fixed computers for years and I used to hang around him, picking up knowledge. Computers are fun and exciting. All those pieces put together and you can play a game that takes you to another world or talk to someone on the other side of this world. When I lived in the dorms the other girls would bring me their laptops whenever something went wrong. I’d charge a minimal fee or trade for the kinds of things you want in a dorm (toilet paper, non-cafeteria food, laundry detergent, dryer sheets, quarters of the washer and dryer, etc). All the girls knew who to come to for technological help but I didn’t make a single friend. Despite the fact that people were often coming by my room I didn’t learn anything about them. And I had  no idea why. I wasn’t surprised by this failure. I was pretty used to it actually. Social reject began as early as kindergarten for me. I have two friends these days. One I’ve known since junior high and the other I met my second semester in college. I had more friends in high school but once we scattered after graduation I lost them. Without the commonality of being at the same school and in the same classes I just didn’t know how to keep a friendship going.

It wasn’t until I had spent a very lonely three months far from home that I asked my childhood friend, R, about my social failures. She said that I seemed rude, dismissive, and short with people. She said I seemed disinterested and would say odd, sometimes bizarre things. She said I never made eye contact. I was closed off and emotionally distant. She knew I wasn’t really uninterested and that I did care deeply but it took a lot of work/time/proximity to get the real me. In other words, I was a hard nut to crack. Also, I spent so much time alone in my room reading and playing video games. How was I supposed to make friends if I was never around people?

So I decided I was going to try. I started eating my cafeteria dinner in the dorm common room when I knew other girls would gather as a group to watch a particular show on the common TV. I knew nothing about the show and thought that asking questions about it would be a good way to get a conversation going. I listened intently as the other girls explained the characters and plot lines. They seemed to enjoy teaching me the ins and outs of the program. I made sure to smile a lot and look at people’s faces (not the eyes though) to show I was paying attention. The show was Project Runway which consisted mainly of one thing I hate (interpersonal drama) and one thing that bores me to the point of drooling (fashion). So maybe I needed to find a group that watched a show I was interested in. I like procedural cop shows (Law and Order), documentaries, cooking shows, horror films, and anime.

When I learned another group of girls met informally on a different night to watch Supernatural I thought, “Yes! These are my people.” But even then I simply couldn’t seem to connect with anyone. That barrier (that same old social barrier) was between me and them. I didn’t know how to break through it. I never knew what it was I should say, when I should say it, or how to keep a conversation going. Beyond my socializing problems, the sounds of the TV, the sounds of chatter, the florescent lights in the common room, and the mingling smells of food and perfume were too much for me. Eventually I just stopped going to join the others. I had never had much success socially (at school or my job) and it seemed like college was going to more of the same.