#autisticspeakingday

“This is a unique situation” “I am in charge and I am autistic so that is not needed” “That only applies in certain situations … this is not one of them” “This is a different kind of decision”

 These are all statements or similar to statements I have heard recently from people who have authority over autistic individuals in various services. The people in authority state their agreement to the Autistic Self-Advocacy Network tag line ‘nothing about us without us’ but come up with an excuse as to why they do not have to follow that statement in specific situations. Some of these people will even tell other people in authority over autistic individuals that they must listen to their clients. I am sure some even think that they do listen to autistic people and value what we have to say because they do listen ….. in certain situations ….. when the person in authority thinks it is necessary or, to be blunt, when it suits the person in authority to listen.

 I have reasons for not wanting to go into detail about the situation that happened recently. That said, the reason I am writing this for autistics speaking day 2015 is that not being listened to when accessing disability services is sadly, very frequent. A few years ago I was part of a social group for autistic women. I hope I am never again part of a group where the person in charge has chosen bowling for an activity and only 4 people actually participated in bowling while the rest of sat and talked at a table because we did not want to go bowling (and of those 4 people, only 2 were clients). I hope I am never again part of a group where we are told we can make our owns rules, because we should have some ownership of the group, but our rules will only apply to certain people and will not be considered to be as important as rules set by the person in charge. I hope I am never again in a social group that ends up being suspended because some of the clients felt so angry about not being listened to that they walked out of the group one session and meetings had to be held in the following few weeks. That said, I do not regret walking out and would do it again if faced with the same scenario …. But this could all have been prevented if we were listened to and had a say in decisions that affected us.

 When autistic people are only given a voice on some issues and decisions that affect us when accessing a service, it means that ‘nothing about us, without us’ is not being fully adhered to. It is a token voice and it gives the person in authority too much power. The person in authority comes with his/her own biases of what they think the service should be like and how the service should be presented (in the case above, the person in authority seemed to enjoy bowling and selected bowling as an activity regardless of the enjoyment of the clients). The person in authority needs to remember that the service is there for autistic clients and the clients should have a say about the service. That does not mean that every suggestion made by the clients should be followed (each autistic person is different after all, and so each client will have different ideas on what the service should be like) but it does mean the clients should always be consulted and have the opportunity to speak or communicate their thoughts in other ways. It also means the person in authority should take time to seriously think about the suggestions being made and not just instantly dismiss them.

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.