Autistic Wizard

However, Harley was different.  He was the dog of a family friend, very old and was beginning to have problems.  We would watch him at our house when they went out of time.  He had panic attacks, like me, he wore a weighted vest, not like me (but I understand how comfortable the sensation is), he liked to sit around most of the time, like me, he didn’t want attention all the time, like me, and loud noises bothered him, like me.  Together, we spent the day hanging out and it was honestly some of the most peaceful companionship I’ve ever had.  For some reason (I forgot why) my family was gone all day for a couple weeks (school and work and stuff I guess).  So it was just the two of us, during the day.  Harley wasn’t a normal dog, he had several disabilities that I needed to keep in mind.  When he was at home, he would have panic attacks and throw himself down the stairs.  He didn’t do any of that at our home, but we didn’t let him climb the stairs.  My room is my fortress (of solitude) so I spend most of my time there, less interruptions and disturbances.  But my bedroom was upstairs and Harley didn’t like to be alone.  I migrated to the couch, which wasn’t that bad, because no one was home.  I put his bed in front of the couch and he would come lay there, sometimes over my feet (which feels nice when a dog does it) and sometimes he would nudge his head onto the couch, wanting to be petted, and I would.  I picked shows based on avoiding loud sudden noises and kept the volume low (which I do anyway).  And we would go on walks and the afternoon and evening, but not long enough for me to have sensory issues (heat and sunlight) and allergies (regular hay fever).  We accounted for each other’s issues and quirks and got along so well.  

For Autistics Speaking Day and Autistic History Month

(My) Autistic History

I spent thirteen years of my life hating myself (I turned nineteen two days ago).  I no longer hate myself.  All that hatred isn’t gone and I still don’t like things about myself, but I’m happy with me.  I love me.

I realized that there was something weird about me, not when I could read the first Harry Potter book at age 4.  I realized that I was smart when I entered school.  I realized that I was unbelievably stupid about most things.  One of my clearest memories from that time, is one of the teachers holding a book up in front of my face, and telling me to describe what was happening.  I tried to explain that I didn’t get it, that how could there be a book without words.  Books need words; I can read; why wouldn’t they give me a book that I could read?  (My legs are bouncing as I write this.  I usually stim when I’m excited or anxious.  I’m the latter) They told me that this was easy, that all I had to do was describe what was going on, that everyone else in the class could do this.  Still, I didn’t get the concept.  Why was there a book without words?  There’s no point.  I can read chapter books.  Give me one of those.  I’m beyond these.  But apparently I’m not because I still couldn’t do this simple assignment.  So I tried, I looked very carefully at all the aspects of the picture, from the background, to the decorations and finally to the girl, trying to commit every detail to memory.  I couldn’t tell what was important.  The teacher was getting impatient now and told me to describe the most important thing, and then when there was some more confusion, what the girl was doing.  I looked at her.  She seems unremarkable, doing a boring mundane task.  I said that she was putting on a dress.  The teacher prompted me further, why is she putting on a dress?  I told her that I didn’t know.  And how could I?  I have no idea what this girl is thinking or what her life is like or anything besides that she’s putting on a dress. Maybe if there were words to read, I could tell you, but I couldn’t.  This prodding goes on for a couple minutes until eventually she told me that she was putting on a dress for a wedding.  The color of the dress had seemed inconsequential until this point, another one of those details that I was supposed to ignore for the main action.  And there isn’t anything that says that white dresses could only be worn for weddings; that isn’t a rule!  I felt stupid.  And I’m not stupid.  In fact, for years and years, my entire self worth would hang on the fact that I’m smart (it might even today. I’m working on it).

The first time I realized that I wasn’t that good at socialization, I was also in second grade.  I was trying to figure out why this girl wouldn’t talk to me.  I hadn’t broke any rules that I knew of, so why?  To this day, I still have no idea why she didn’t like me.  

The first time I realized that I was “weird” and “strange” was at a break or recess.  Sometimes I could get along with the other kids.  Top Trumps, the card game, was popular; it was all facts, statistics and memorization, all my areas of expertise.  When the boys didn’t want to play (because I was the only one of the girls who did), I would walk the field alone or explore on the little wood of the field, also alone.  I tried to figure out somewhere I could be alone, and make little daisy chains.  It was sitting on a stump in the middle of a little wood outside my school that I realized that I wasn’t like any of the other kids.  I don’t remember if I decided to do anything about it, but that feeling of being wrong, would follow me for my entire life.  

We moved a lot; my dad’s in the military.  Then one of this experiences that mark my memory came along.  We were taking a standardized test; I did fine on the multiple choice portion, but then the essay prompt came along: Describe a fun time you had with friends.  I realized that I didn’t have any friends and that I didn’t have anything to write about and that something was wrong with me.  I spent the whole forty five minutes allotted staring at the blank piece of paper, knowing that there was something wrong with me.  

Something very wrong with me.  I was alone and how I had not realized this before now.  When they saw that I hadn’t written anything at the end of the test, they made me call my mom, who told me to make something up.  I did, at the back of the classroom while the normal classes continued; I made up a story about going to an amusement park with a friend.  I made up the friend and I hate amusement parks (They’re loud and noisy and hot and I can’t really go on most of the rides, except swings and teacups).  No one ever brought that back up again.  

The first time I got in trouble in class was in fourth grade.  I was talking to one of the girls and my table and I don’t remember how or why it was brought up, but I just remember her asking me if I thought I was smarter than her.  Maybe if I had social skills, I would have heard the outrage and hurt in voice, but I didn’t and I said, completely matter-of-fact, because it was just a fact to me.  “Yes, I’m in Gifted so I’m smarter”  I didn’t mean that she was stupid or anything and I wasn’t trying to hurt her.  But I thought that was an empirical fact.  She started crying and went to the teacher.  I was yelled at but I still didn’t understand.  I was in Gifted and she wasn’t, doesn’t that make me smarter?  Gifted is for the smarter kids.  I’m in Gifted.  She’s not.  I didn’t feel superior.  I knew that there were things that she was better than me in.  I just had this one thing, I was smart.  

Right around this time, I started picking the skin off my fingers.  I know now that it was a form of stimming.  I started just for something to do, pulled a little bit of skin off.  But that made it uneven, so I had to pull more and more and more.  My fingertips are the main place that I experience texture and because of the unevenness it hurt to rub it on fabrics, even soft ones.  So I pulled more, trying to make it even again.  I pulled all the skin layer by layer of my fingers until they bled.  I literally couldn’t stop myself, to wait until the skin grew back, so I just kept pulling.  Lotion would help, but the smell and texture of all lotion bothered me, so I couldn’t put it on for years.  Even now, I can very rarely handle it.  It took years to break that habit.  

In fifth grade, in Albuquerque, I realized something.  I didn’t have to hang out with girls, at all.  Girls were confusing and unknowable, and I know I’m generalizing but they seemed like a monolith of confusion back then.  I hung out with boys and we had adventures and lightsabers and walked and talked and played video games.  

It was then that I met Adam.  Adam was great.  I can’t remember him without smiling.  Adam didn’t care what anyone thought of him and when I was with him, I could be like that too.   We had a glitter fight in the classroom one time; we got in trouble but that was fine.  I would never break the rules of the class without Adam there; his excitement was infectious.  Adam lived down the street and constantly worked on his movie, The Adventures of Bob.  I had a character, at least until I left.

The two notable things about sixth grade was Kevin, a constant frenemy and rival who I spent every lunch and a couple classes with that year, and the other, which ruined the entire world as I knew it, romance.  All of the sudden there were a lot more rules.  There were rules about being in my room with the door closed, but only with boys.  People would assume that Kevin and I were dating, and coo over us.  It all got very complicated, especially because I wasn’t really interested in all that.  I wanted to hang out with my friends, all boys, without all of these problems.

After that year, I have always had trouble hanging out with boys.  There are so many things that I don’t understand.  Boys became the confusing monolith because they started saying things that I didn’t understand and we couldn’t be friends anymore.  I still have trouble being friends with boys, out of a fear and paranoia that I’ll make a mistake or break a rule I don’t know about.  I have no idea what flirting is and it scares me inordinately.  Right now, my only male friend is Joel, also on the spectrum.  

Seventh grade and eighth grades were horrible, but unremarkable, unless we’re talking about amazing displays of racism and sexism, being ostracized and academic and extracurricular success.  Then in eighth grade, I realized that I had problems; I didn’t love people that weren’t in my family.  I saw the rules as that you had to love people that were in your family, but you didn’t have to like them.  So I loved just my family, whereas my family was so loose with the term, saying it to friends and neighbors and it’s a serious word.  That was just another thing that made me weird and wrong; I couldn’t love.  I said that I loved my family, but I didn’t even like most of them.

Late middle and early high school saw me withdrawing away from people and into books, anime, and video games.  In eleventh grade, we moved in NoVa.  There I met the best friend I ever had.  She loved listening to me talk, about history and mythology and books, and everything I love.  She didn’t mind me explaining things to her.  She would pick where and with whom we sat at lunch and I could just talk.  

When my sibling started seeing a psychiatrist for the first time, mom said that he thought my sibling was “easy and simple.”  Someone in my family joked, it might have even been me, I don’t remember, that I would be more of a challenge.  Everyone agreed, but no steps were taken.  Maybe it was because I was an (almost) straight A student or because I never really cried in front of them.  To this day, it seems inconceivable that my entire family acknowledged how “strange” and not “normal” I was, but didn’t seriously think about having me see a psychologist.  Especially because I had been thinking that there was something deeply wrong with me since elementary school.

A couple weeks later, I brought up that I thought I had autism to my mom.  It was in her bathroom, early in the morning.  I couldn’t wait until after school to bring it up, because I had found ME.  In that list of symptoms, I found the essence of my personality, all the things I could never explain.  My mom said that she thought so too, but didn’t suggest going to get an official diagnosis (or help of any kind).  Since she didn’t suggest it, I just kept doing my thing.  It was a rule that only experts could issue a diagnosis.  This stayed at the back of my mind for two years.

At college one of my hall mates Joel was doing a presentation on autism and what it’s like to be on the spectrum.  I tried to avoid going, because that was still floating in the back of my mind and I didn’t really want to face it.  My friends pressured me to go though (and I have trouble saying no because I’m afraid people will leave me if I don’t go along with them).  So I went.  I cried the entire time, because this was ME, and he talked about being ostracized and excluded and bullied, and having different skills and this was ME.  I ran out of there and cried in the bathroom for what felt like hours.  I had a disorder.  That was what made me wrong.  But I’m not alone; there are other people like me, out there, who have those problems.  I finally realized that all the sounds I heard were ten times louder and smells and textures were ten times worse.  It wasn’t that I was just pathetic and couldn’t deal with it like everyone else.  Everyone else didn’t have these problems.  That’s why I was the only one I knew who would flee loud, crowded spaces and keep their fingers in their ears for an entire movie because it was too loud (Guardians of the Galaxy).  It wasn’t because I was so pathetic that I couldn’t handle it like everyone else could.  It was genuinely different!  Then I did the research and I met Joel and Danielle, both on the spectrum.  It was the first time that I ever felt like I belonged anywhere.  They got me!  And I got them!  In a way that I didn’t think was possible for me.

So I have autism, great!  But then I came up against my biggest fear, society.  I didn’t see anything wrong with being autistic.  I was different and I’m better that way!  I’m only me because I’m that way!  But I knew the reputation and I was scared to tell people, that they would think that I was disabled.  I am disabled, but it’s not my fault.  It’s society’s fault because it wasn’t built for people like me (for more information see the social model of disability).  Still, they weren’t educated. When I “came out” to my friends, I got “I don’t think you have autism” both times.  I cried a lot, going to sleep that night.  That of course, gave me doubts.  So no I can’t say I’m autistic because of the rule: only experts can diagnose.  I was scared of being judged because of negative stereotypes.  I knew that it was up to me then, to change those stereotypes, but I couldn’t do it.  

I went home for summer vacation, got my diagnosis, and came back ready to say that “I’m autistic and proud!”  But I still hated myself.  Not for having autism, but just because of my personality.  I thought I was annoying and friendless (both of which were pretty much true at that point).  The last semester I was depressed and anxious and it creates a downward spiral.  Under stress, my resistance to sensory input dropped.  I started avoiding the dining halls, classes, clubs because it was all too much to take.  So even though I knew know that I’m autistic, I was scared of that.  I didn’t realize that I could be like that.  

I came back to campus this year, trying to fix or cut out all the bad influences from last year.  I got a Wii U and a TV, and lived off campus (so much better for sensory issues), no roommate (so I can be alone and decompress), new classes (not forcing myself to take classes I didn’t like) and proudly autistic and ready to advocate.  It was the brand new me!  Except that I was friendless and lonely.  I pretty much lost all the friends I had made in college last year, which is fine, because most of them were horrible friends that made my social anxiety and depression a hundred times worse (except you Joel).  After I made some friends, I was happy!  I was succeeding, enjoying my hobbies, advocating, motivated, social (or as social as I get).  But there were still these thoughts of self-doubt and self-hatred.  Then I had a series of epiphanies.  

One, I don’t have to be good at everything that I undertook

Two, my own happiness comes first

Three, I’m an amazing person and if people don’t realize it, they are missing out.

Four, I’m a far better person than I gave myself credit for.

Five, if I could change my personality even a little bit, I wouldn’t.

Six, there’s no way I can be a better ME.  Sure I can try and work hard, but don’t try to do things that I can’t.

Seven, I have strengths and weaknesses just like everyone else.  Communication is a weakness for me.  

Eight, When I put my mind to something, there is nothing that I can’t accomplish.

Nine, There are limitless possibilities ahead of me.

Lastly, I’m perfect.

Not empirically perfect, but perfectly flawed and perfectly human, just like characters in books and TV.  I don’t begrudge them their faults, nor to begrudge another humans theirs.  I need to not begrudge me mine.  Whenever I was walking to class or anytime I thought negative thoughts, I would run through a motivational speech in my end, praising my strengths, minimizing my flaws and focusing on the limitless possibilities.  

And that’s how I reached Acceptance.  Not just Autism Acceptance.   But Self Acceptance.  

I still have negative thoughts and I still get embarrassed when I don’t “pass as neurotypical.”  I still have a ways to go, but I’m on that path now.  I’m really open about having autism.  I tell pretty much everyone I talk to for more than five minutes that I have autism, because Neurodiversity is one of my special interests and I can’t go more than ten minutes without mentioning it.  I don’t care as much if people think I’m weird or whatever mistakes I may have made in a conversation.  

It’s been a busy semester for the Neurodiversity Initiative and it’s not even close to over yet.  So far, we’ve held club meetings, council meetings, an event with John Elder Robison, a panel, and a movie and TV show night.  

So the Neurodiversity Student Group is going great.  The power is split between Joel and Haley (me).  Our first goal this semester was to gather more members, since we ended the year with three and started the year with two (Danielle graduated).  Halfway through the year, our list serve now numbers 38 members, which is amazing.  There’s a bunch of excited and motivated students.  Most are psychology or neuroscience majors and we didn’t have as many neurodiverse members as I would have hoped. Though it’s understandable, it all has to do with the social stigma, so we’re planning a big media campaign for the spring so that every student knows what neurodiversity is and why it’s awesome.  We held a movie and TV show night where we watched TV shows that had neurodiverse representation and talked about whether it was good representation and what it said about neurodiversity.  We’ve also held other meetings to get activities and events organized.  

John Elder Robison, who will be a Scholar In Residence at W&M for the next three years, came to campus in October.  The club leadership held a meeting with him to discuss the neurodiversity initiative and then we held an question and answer session with with interested students.  Ten students came, which was lucky, because that was how many seats we had.  

As part of Mental Health Awareness, HOPE held a panel about Neurodiversity led by Dr. Burk, who heads the neuroscience program.  Dr. Burk invited Director Mann of the counseling center, Raneé Salas, the Community Liaison for the Neurodiversity Council and an advocate and author, Joel, Aaron (another neurodiverse student), and me to participate.  We had a great turnout!  Probably around forty students came.  The room was reserved for an hour and a half, not expecting that we would use that much, but we did!  And even afterwards people came up to ask more questions and to tell us how we changed their lives (!).  Also, I passed around a sign up sheet for the neurodiversity club (which is where we got a lot of interested parties).

We also had a Neurodiversity Council meeting, but I believe that is all confidential.  Kidding, but one of the things that came out of the meeting is that I am now gainfully employed!

I’m working as the Student Assistant for the Neurodiversity Council, which basically means that I coordinate events and send emails.  I’m really excited to start working next week.  One of the things I’ll be doing is more administrative organization, such as making a google calendar and probably a newsletter, as well as sending out information on events affiliated with Neurodiversity.  

I had a lot of trouble going to sleep as a kid.  A lot.  This lasted for probably around six to eight years.  I still have problems going to sleep, but I’m no longer painfully aware of the time.  I’ll share my secret (no idea whether it will work for any one else) after I describe the problems I had.

My brain didn’t stop.  And I had no idea how to make it stop.  It all started when I learned how to read, which was early.  I read the first Harry Potter book when I was four if that puts it into perspective.  As I recently learned, that’s called hyperlexia.  Once I learned how to read, once I was aware of the vast worlds and bodies of knowledge that were out there to explore.  I couldn’t sleep; how could I?  There’s so much stuff that I needed to know, needed to read.  

In England, where we lived from 1999 to 2003, I managed to set up my room perfectly for reading at night.  My little bed was against the wall across from the door and I plugged in a nightlight next to my bed (which I turned off when it was actually time to go to bed.  I need total darkness to really sleep).  There was just enough space between the wall and my bed to create a perfect hiding spot for books.  

Every night, once my parents tucked me in and turned off the light, I would find my book in the little crevice, pull it out and tilt it toward the light to read by. If my mom and dad caught me, I would get in trouble, and worst of all, they would take my book away.  I remember begging my sister not to tell my parents when she saw me reading after lights out (I wasn’t allowed to shut my door, probably for this very reason).  The eventual downfall of this system was that when my parents opened their door, I would react as fast as possible to drop the book back down into the crevice, but when you drop a hardback book about a foot, it makes a noise, and that can only happen so many times before they catch on.  

My near perfect system foiled, I spent the next couple years, trying so hard to go to sleep, but not being able to, until exhaustion took me.  One of my problems was that I couldn’t go to sleep without finishing whichever book I was reading.  Reading a chapter before bed, as my mom extolled as a way to get drowsy, meant that I finished the entire book.  When I started reading five hundred page books, that caused problems.  I just couldn’t fall asleep knowing how it ended and everything that happened.  

Soon after this, I started waking up at three or four in the morning, completely awake.  I would pull out a book and start reading and my mom would come wake me up four or five hours later to go to school.  Those were my favorite days.  Four or five hours when I didn’t have to talk or socialize or worry about pressure.  Just me and a book.  Those were the only times in elementary school that I felt free.  

After my parent’s had caught onto my ways, I resorted to asking them.  Every night, I would beg for fifteen more minutes, ten more minutes, five more minutes, now I have to finish my chapter Mom.  I kept this up, hoping that they would forget to come tell me to put it away, so I could read to my heart’s content, unconstrained.  One time I remember, I was begging my dad for fifteen more minutes and he said that if I counted to two thousand by ones, I could read for fifteen minutes.  I know that the trade off wasn’t fair, it would probably take longer than fifteen minutes to count to two thousand, but I was desperate and I really wanted to read some more.  I didn’t realize this at the time, but Dad thought that I would fall asleep before counting to two thousand.  Of course I didn’t.  Instead, I went to my room, laid down, counted to two thousand, and then came back downstairs and told him that I counted to two thousand and can I have fifteen more minutes to read now?  He was shocked but begrudgingly agreed to fulfill the agreement.  I was honestly confused about why he was so surprised.  Counting is a task that requires brain power and mental facilities, why would I fall asleep in the middle of an important and immersive task?  The offer to count for more reading time was never offered again.  

As I got older and my life got busier, I realized that I did need my sleep.  That raised a whole set of other problems.  I entreated Mom and Dad for strategies to fall asleep and struggled to acquire the self discipline to put a book down for the night.  My dad suggested counting sheep, which most certainly didn’t work.  I did my best to visualize the sheep jumping the fence one after another, but I couldn’t help but ponder the absurdity, why sheep, why counting?  Especially since like I said earlier, counting is something that keeps me awake.  Even if I tried, I got bored of counting and started thinking about other stuff.  I simply could not turn my mind off.  Thoughts stampeded through my head and broached my sleep.  

My strategy: I don’t know why this works, but around this time, I realized how much I loved writing fiction, stories of fantasy lands and planets, with magic.  I would just think about these worlds and stories before I fell asleep.  Sometimes, they would lead into my dreams.  The important thing was not to think about my life or personal concerns.  It worked like a charm, I would brainstorm, I have no idea for how long, but I would get lost in one of these worlds of my own imagining and eventually I would fall asleep.  I don’t know whether it would work for anyone else.  

The first time I ever read a book with a clearly stated autistic character I was around ten or so.  The book is Rules, which is about a girl who has an autistic brother and is jealous of all the attention that he gets and how embarrassed she is by his behavior.  She makes a rule book for him.  Now, I know that the actual plot of the book is one of character development and one of learning acceptance, but when I was a kid, I didn’t get that.  

I had two feelings about this book, that I remember very clearly, just because this book really affected me, the first was that “the sister was horrible and that not everyone can do everything that everyone else can and that she shouldn’t be so mean.  Yeah, it may be frustrating sometimes, but I’m sure he finds what she does frustrating sometimes as well.”  I remember clearly thinking this, and being so frustrated with her and wondering why she was so terrible.  I had a visceral enough reaction to his book that I remember it clearly almost ten years later.  

The second thought is that I wanted a rule book for human interaction like the kind that she made for her brother.  It seems like a contradiction, doesn’t it?  I disproved of her trying to control her brother’s behavior to make him seem “normal” but I wanted the very same thing for myself.  I wanted someone to give me the rules to social interaction and I pored over the rules that she wrote down for her brother, even as I detested her from doing that.  Seeing as I identified so much with a character, not even the main one, in his difficulties with social interaction, it honestly feels like a failure that I didn’t realize right then and there that I was autistic.  

I look back on that and I wish that I would have.  It would have made my life so much better in some ways.  I still don’t think it would help entirely because my parents wouldn't have let me see a psychologist to get an actual diagnosis and being a logical, rational child, I would need an expert to tell me before I was sure.  I don’t think I would have even brought up these thoughts to them.  I was in third grade at the time when you are supposed to have faith in your parents.  

But why didn’t I look at this character, who resembled me in countless ways and say “Is that me?”  It’s a simple logic leap. A = B, B= C, so A = C  me = character; character = autistic; me = autistic

It’s ironic, I think.  I didn’t make the connection because I wanted to respect those with autism and I didn’t want to delegitimize a serious disorder by attributing it to my own issues with social communication.  (And I didn’t even realize that my own sensory issues weren’t par for the course until I was eighteen).  It’s because I was unaware of the most crucial fact about autism.  It’s a spectrum.  I don’t have to be exactly like this character and do everything like this character to be autistic.  Some authority isn’t going to take my autism card if I don’t fit every single characteristic.  (I’m still kind of scared about that; I read personal stories and testimonials and I think “Is my life that hard?  Maybe I’m not on the spectrum”—maybe another blog post).  And if ten year old me had known that there was a spectrum, that you can be smart and speaking and still be autistic.  And that the reverse is true, that you don’t have to be smart and speaking to be autistic, then I think that, even if I didn’t realize that I was autistic, then I would have ended up respecting myself way more.

More importantly, I don’t think a label should stop you from identifying with a person or character.  Their problems and struggles can be so much “worse” than yours, but that doesn’t delegitimize your feelings or the camaraderie that is created.  Whether or not, I could see autism in myself back then, I was holding myself to a higher standard than the character.  I talked about how horrible the list of rules was for the character and pored over them and committed them to memory for me.  It’s a vicious double standard.  I wanted the character to be happy doing whatever he wanted to and I wanted me to appear “normal,” even at the cost of my own happiness.  

I love the quote “If you’ve met one person with autism, you’ve met one person with autism.”  It’s impossible to make generalizations or reduce a character or person to that single label above all else.  Everyone is their own individual person, with unique characteristics and strengths and weaknesses.  

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I realize that I misrepresented this book in my article.  I was talking about my own childish interpretations, heavily influenced by my thoughts and characterizations.  This book is about acceptance, but I missed that as a child.  Now that I think about, I may never finished it because the main character’s outlook disgusted me so much, which would explain a lot.  The description is below.