Sunday, October 31, 2010

It Gets Better Project

The It Gets Better Project is devoted to helping prevent gay youth from attempting suicide.  Gay teens are four times more likely to take their own lives due to bully, pressure and other issues which impact them.

I am bisexual and felt the need to share my own story with the It Gets Better Project.

Friday, October 29, 2010

Child and adult

I'm not really sure what I am right now. Legally, I am an adult. I'm able to own property, vote, marry, smoke, have sex, gamble and all sorts of things. I've got a lot of rights and a lot of rules to go by.

At the same time, I'm still a kid to most people. I'm 19, still very young and sometimes stupid. I'm learning a lot and making many, many mistakes. When I was still legally a kid, I was never a child - I had too much weight, too many problems to experience being a child.

It's a really tricky balancing act because I'm not sure what I'm supposed to be, how I'm supposed to act. I'm in college and there are a lot of people around me who choose to remain children. They smoke, drink, do drugs and get lost in the hormones of teenhood.

I see that and know that I don't want to be it, but I don't know how to deal with the stupid hormonal impulses. I shut down or speak up at the wrong times. I act stupid and rebel when treated like a kid but can't seem to own up to the responsibilities of being an adult.

I never went through these experiences when I was an actual teenage kid and they're all catching up now. I don't know what to do with them some days, but I'm making it through.  It's always a challenge, but I know I'll come out better on the other side.

Wednesday, October 27, 2010

Safety in Routines

((Sorry for the lack of posts.  I've been sick with strep throat and have been in bed.))

Routine is very well known to be something that people with Autistic Spectrum Disorders can be obsessive over.  We like things to be just so and hate to have any routine interrupted.

When I was a kid, my mom would have to warn me over and over again before she would change the activity I was doing.  If I was playing on the computer, she would come down two or three times before dinner to warn me that we were going to be having dinner at a particular time and that I would have to get off the computer.  When I was in classes at school for kids with Asperger's Syndrome, there were schedules and charts everywhere and the teachers were constantly writing out what activities were going on when on the board.   This made things very safe.  The world seemed very controlled and eased a lot of my worries.

Schedules are a wonderful thing.  They tell you what's coming up next and give something to expect, a predictable experience that can be controlled.  There's nothing random - it's A B C.  This is comforting.  It's hard to describe how panicked I get when a schedule changes, how nervous I feel.  It's like things are out of control.  I get scared that I've messed up or that I'm going to get in trouble and sometimes start crying.

As I've gotten older, I've relaxed a lot in my routines, but I still need warning if something is going to be changed.  Several times a class has not met for a day and I didn't get the email about it so I became nervous that something had happened, they they had gone somewhere for class and I wasn't told.  I'll often check a piece of paper over and over again to make sure that I have times exactly right, that I know precisely where I'm going or else I panic.

I no longer throw fits when my schedule is interrupted, but it's still a very important safety feature in life.  A predictable schedule where I know day to day and week to week what is going on allows me to relax and worry about things that actually matter instead of fearing the possibilities.

Friday, October 22, 2010


A few years back I was having a birthday party and during part of it we had to drive to another location.  I was in the car with a few friends and had just gotten a new book for my birthday.  Being a not-very-social creature, I started reading.  When I read, the entire world went away - it just disappeared and didn't exist.  I couldn't hear anyone talking or see the car moving.  I wasn't even conscious that I was in a moving vehicle until someone began to shake my knee and yell my name.  Turns out they had been trying to talk to me for the past minute or two and I was entirely unresponsive.

This is what superfocusing is like.  Aspies have some pretty cool things about them and superfocusing is one of the best.  We can't do it consciously (or at least I can't) but superfocusing is when we become so focused on an activity that the world doesn't exist.  Someone could be shouting in our ears and we won't hear a thing because we're so focused.

It's a very zen state of mind because there is only the present, the activity being done and nothing else.  I get like this when I read, just getting so into the book that there was nothing else.  I've heard of people doing it with just about every solitary activity - math, playing games, art, even just staring out the window.  For how uptight people seem to think we are, we do know how to chill out and ignore the world.

Wednesday, October 20, 2010

My take on the vaccine issue

This is my first controversial post.  The opinions expressed are my own.

In the last few years, there has been a media firestorm over the issue of if vaccinations can cause a child to develop autism.  Most are blaming it on mercury, a preservative used in the vaccines.  But mercury was removed from these vaccines years ago and the instances of autism are still on the rise.

I am insulted by the idea that my AS was caused by a vaccine and appalled by paranoid parents who don't vaccinate their children.  AS is a chunk of my personality and some traits of it are found throughout my family.  It's insulting to tell me that who I am is just a medical mishap.

It is not only irresponsible but abusive for a parent to not vaccinate a child.  Vaccines are so important to keep diseases which crippled and killed children for ages from resurging and causing damage far worse than autism ever could.  A parent who refuses to vaccinate is not only putting their child in danger, they're endangering every other child that their kid comes in contact with.

Not only is it irresponsible to the child, it represents a terrible mental state for a parent to have - believing that they are entirely blameless for anything that happens.  It's much easier to blame your child being ill on something remote and dictated by society than it is to acknowledge that your own genetics may have contributed to it.  Parents who can't accept their faults shouldn't be parents at all.

I am leading a full and productive life with autism.  A person dead from polio couldn't say the same.

Monday, October 18, 2010

Anatomy of a Shutdown

Every breakdown, meltdown and shutdown is a little different and everybody handles them differently.  After having one last night and having to explain what happens during it to a close friend who was present, the process is fresh in my mind.  If you've ever wondered what's happening in the mind of an Autist or Aspie going through a shutdown, it might be something close to this.

First, there has to be buildup to the trigger.  A meltdown can seemingly come from something totally insignificant, but there is usually prior emotional stress which allows the straw to break the camel's back.  In this case, it was the combination of being around someone who was stressed out all day and another person becoming angry at me,

Second, the trigger happens.  Here it was a minor change of plans.  In the sub-second, there's a fear of something happening or not happening.  I was afraid that if I did the change, I'd have to talk to or see the person who was angry at me and I wasn't ready for that.

Third, the freeze-up sets in.  This is when responsiveness to words and external stimuli slows and the brain is overloaded, unable to process what's happening.  The ability to move or speak is greatly reduced, but mental function remains the same.  I am well aware of what's going on when I start to melt down and how I'm reacting.

Fourth, if the outside stimulus or overload continues, all external control is gone.  I can't speak or move or make any kind of signal of what's going on in my head to the outside world.  However, I continue to think clearly and can understand everything which is being said to me or is happening, but I'm not in control of my body.  I'll jerk away, tense, cover my head or bite myself and not be able to control it.  If I'm asked to move or do something, no matter how much I might want to, I can't.  My entire body is tensed and the stimming is stepped up.

Fifth, the tension continues but it doesn't increase any further.  No control is regained but none is lost.  This can continue for a few minutes to a half an hour.

Sixth, the letdown begins. I start to feel fatigue and pain and regain the ability to move and speak a little.  It's easy to go straight back into the overstimulation if something bad happens again.  After some time, I'm able to answer questions and might be capable of touching someone again, even if it's just with one finger.

Finally, the sickness comes over me.  A meltdown is very painful.  My muscles are tensed for an extended period of time, breathing is very shallow and through my mouth, so when I come out if it I feel sick and tired and need to drink something.  Sometimes I'll just collapse and sleep for an hour or two straight after one and other times I'll get on with my day but have a headache or stomach problems.

I am entirely aware throughout any kind of meltdown, shutdown or breakdown and yes, if someone does something particularly stupid to me during one, I'm going to remember it and likely resent it.  It's very painful not only physically but mentally because I'm so scared by losing that control.  I imagine the frustration is much like how it is for those who are entirely non-verbal - I've got lots going on in my head and no way to show or tell anyone else.

This isn't how every person reacts or what they go through, but I hope it spreads some knowledge.

Sunday, October 17, 2010

I Love Someone With Autism

I had never heard of this project until it popped up on my Twitter feed.  This video is a touching tribute to children and adults with Autism and those affected by it.  It's beautiful and well-made.  Be warned, you may cry while watching.

Wednesday, October 13, 2010


Aspiedar.  It's that feeling that some Aspies get when they suspect that another person might have AS.  It's a bit like gaydar- an aware Aspie can watch a TV show or listen to someone talk and instantly be convinced that the person has Asperger's Syndrome.

This happens to me all the time.  I was watching Bones for the first time with a friend.  Each time Bones spoke or interacted with someone, I became more and more convinced.  During the second commercial break, I turned to my friend and pointed out all the Aspie traits Bones has, convincing him as well.

The most disconcerting time I've had my Aspiedar pinging was during my Introduction to Natural Sciences class.  I'm pretty sure that my professor is and Aspie just from the way he talks and responds to questions.

Parents of Aspie kids might have it too - after all, you listen to your own child speak enough and you become familiar with the characteristics almost as well as someone on the spectrum themselves.

Has your Aspiedar pinged lately?

Monday, October 11, 2010

Teachers Are the Worst Bullies

Kids with Aspergers often relate more closely with adults than they do with other kids.  Adults are more often at our intellectual level and able to keep up with our mental pace, far more than our peers ever could.  They also aren't bound by the social constructs that force every kid to tease those who aren't exactly like them.  A good teacher can be a guide, a light in the darkness and a comforting hand at the back (I shudder writing this expression - having my back touched scares me).  However, a bad teacher can traumatize us and send us back farther.

As with anyone who has gone through schooling with multiple teachers I've had my fair share of both.  Luckily there have been more good than bad, but both have existed.

There seems to be a misconception that teachers cannot be bullies.  This is wrong.  Teachers can be the worst offenders in bullying because they use a position of power to commit their crimes.  A teacher can get away with some of the most damaging psychological abuse that a child will ever experience and deflect every complaint from them.  They can misuse power and create an inescapable situation of abuse.

One of the most damaging experiences I've had with bully teachers was with a woman I'll call Mrs. B.  She was a math teacher (a special education math teacher.  Someone trained to deal with Aspies), which already puts her low on my list, but I give everyone a fair shot.  Coincidentally, she was also my IEP advisor, so I had to deal with her on a regular basis.  This woman (and I use that term loosely here) would single out two or three kids at the start of each semester to pick on.  In this particular semester of 10th grade, I was one of her victims.

I didn't like math but would finish my work and then bury myself in a book.  For the most part, once the lesson started again, I would focus on that and leave the book sitting in the corner of my desk.  Apparently, this was a problem and she would regularly scream at me for not putting it in my backpack.  Not ask me to put it away or remind me of the rules, but scream at me from across the room to put it away.  She would make fun of me for not being able to say the numbers for an answer correctly and not allow me to leave the classroom to calm down (something which was mandated in my IEP).

The worst incident came after I didn't put a book away.  This set her off and she rounded on me, standing behind me and yelling about how insubordinate and rude I was being and how she'd have me written up.  All of this is going on while I'm showing classic meltdown symptoms - biting myself, crying, rocking - because of the stress and the other kids staring.  I broke down in tears and didn't move from a slump on my desk until the end of the class.  She, of course, tried to write me up and blame me for problems in the class stemming from her inability to teach correctly.

If a kid is complaining that a teacher is picking on them, please listen.  Teachers are the worst bullies and can make school hell.  If you're a teacher and see another teacher acting inappropriately, speak up.  No child should have to be trapped in an abusive classroom, especially special needs kids.

Sunday, October 10, 2010

Baking and the Aspie Mind

I love to cook.  Cooking, particularly baking, has been a great therapy and life-skill teacher for me.

What makes baking particularly suited to an Aspie and a good teaching tool is that it gives exact, specific instructions.  It tells you exactly how much flour, sugar, butter or raisins to put in, how to combine them and when to set the oven.  In the same breath of how much of an exact art it can be, it's also one of change and compromise.  Sometimes the recipe is slightly off or contains something you don't want so you have to compensate for it.

When I bake, my mind calms.  I go into a zone where there's just me, the ingredients and the oven.  I know exactly what it wants from me and how it should turn out, but also that there will be changes and bumps, that the dough might not set right or the oven might be slightly off.  I anticipate problems or laugh when I run into them.  It might not turn out perfectly, but there's a tangible result and I know better for next time.

The change benefits are huge, as are the sensory therapy possibilities.  When you know that touching an unpleasant texture will lead to something you can enjoy, it becomes much more bearable.  Likewise, it gives the chance to get messy and explore, to learn.  Even a kid who is obsessed with an entirely different subject can enjoy cooking - you can make dinosaur cupcakes or calculate the trajectory of a banana cream pie.

Another benefit is the sense of empowerment it gives to a kid with a special diet or food allergies.  It allows them to take control of their food and learn to make things that they can eat so they don't feel as helpless to ingredient labels.  A gluten-free casein-free diet is difficult, but learning how to modify foods you love (like pizza) and make them yourself gives a huge sense of satisfaction.  Cooking is also a life-skill that everyone needs to know and making it less scary by trying new foods and experimenting can be great.

Take a chance and bake something!

Link Day: Asperger's for the less scientific

((Just a little video game humor - the image has nothing to do with the post!))

Explaining AS is usually best done through giving the curious links and webpages about the condition.  It's not because those with the disorder or who have experience with it can't explain what it is, but because it's often easier to absorb information at ones own pace.

TV Tropes is the type of website anyone can spend hours bouncing around, going from one page to another.  It also has a surprisingly poignant article on what Asperger's Syndrome is and isn't.  The page is full of pop-culture references and little jokes, but it has accurate information.  It's easier for the average person to absorb than Wikipedia's page on AS.

TV Tropes on Asperger's Syndrome

Wednesday, October 6, 2010

Shutdowns, Meltdowns, and being an adult about it

A shutdown is very different from a meltdown but similar to it in some ways.

Meltdowns are the more dramatic of the two, the classic fits you see in children with ASDs.  They may involve screaming, banging your head against something, biting, hitting and running around.  They're pretty common in younger kids and are the classic sign that a kid is overstimulated by something.

A shutdown is different than that.  They're more controlled, less noticeable and appear more in older kids who can't cope.  These often manifest as a sudden communication breakdown - putting your hands over your ears, going to the fetal position, crying, not being able to speak and hiding.  It's difficult for someone who doesn't have experience with ASDs to understand what's going on.

The last time I had a breakdown was over two years ago and I don't remember when or why I had it.  However, I had a shutdown just last month after being overstimulated by two friends fighting nearby.  Shutdowns are painful.  Remember that if a sensation is strong enough to cause a shutdown, it's already painful, but the response can be just as difficult.

The best way to explain what meltdowns and shutdowns feel like to a neurotypical person is that it's like suddenly being unable to control your reactions.  Everything is coming on too strong, particularly emotionally, and you can't block it out.  You can only think about getting out of the situation no matter what that way is.  You feel unsafe, attacked, like the world is suddenly out to get you.  Eventually you start to be able to think again, but you can't move, can't do anything about what your body is doing.  You just have to sweat it out until you can regain control.  This can take a minute or five minutes or an hour.

While kids can have parents there to explain what's going on or teachers who understand how to deal with their issues, shutdowns are terribly embarrassing for adults of all ages.  Not only that you know you look silly or are worrying others, but that it can damage your reputation.

Here are my tips for dealing with adult shutdowns and meltdowns.

  • Be aware of your own condition and triggers.  I know I keep saying this for everything, but self-awareness is the number one way to prevent problems.  If you know what triggers you to go into a shutdown or a meltdown, you can try to head it off.  This includes seeking accommodations for your condition, finding a safe space and knowing when to bow out.
  • Find a safe space.   This could be as simple as a bathroom stall.  If you go somewhere a lot or know that a place you're visiting could trigger problems, have an escape mapped out in case a problem does occur.
  • Head it off.   When you feel that pressure start to build, that panic rising, know when to get out and how to do it.  When I was dealing with severe depression and was at work, I knew that when that weepy, irrational feeling started to come on that I had to apologize to the customer I was helping and tell another employee that I needed to go get myself together.
  • Make others aware.   If you're going to be around someone enough that they could witness a meltdown, let them know what it looks like and how to deal with you when you go into them.  I told my boyfriend that if I started shutting down to just leave me alone.  Leave the room if possible and ignore me until I have myself together.  This doesn't have to be a big explanation.  It can be as simple as telling a new friend "I sometimes get overstimulated.  If I start flexing my fingers a lot and pacing around quickly and ignoring you, please leave and I'll talk to you when I feel better."
  • Find support.   When you're an adult it sometimes feels like all the services are suddenly closed off to you.  Even if you can't afford counseling, try to find a group of others who have similar issues.  Many churches and youth groups have programs like this.  It could be as complex as a dedicated support group with buddies or as simple as an online message board like Wrong Planet.

Monday, October 4, 2010

Special interests and obsessions

One thing that makes female Aspies different from males is that our special interests are more likely to change as we get older and go through stages.  This doesn't make us any less of Aspies, just different from the norm.

Special interests, also known as specialist subjects or obsessions, are a topic which an Aspie is particularly attached to.  They can really be anything, ranging from very general to very specific, socially acceptable to entirely repulsive, easily found or impossibly difficult.  I've known Aspies with interests in cats, video games, legos, trains, Egyptology, Photoshop, medical equipment and many more topics.

Boys tend to have a primary interest that dominates everything else.  Girls are more subtle and more commonly have several interests, though one is dominant.  Some of my interests through the years:

  • Cooking
  • Kelly dolls (the kid-version of Barbie)
  • Wolves
  • Autism
  • Children with disabilities
  • Star Wars
  • Habbo Hotel
  • Roleplaying
  • Vampires (pre-Twilight)
  • Harry Potter
  • Alternative sexuality
  • GLBT culture
  • Second Life
  • Blogging
  • HTML
A difficulty with this is that it makes me unsure about getting into something fully because I never know when my interests are going to shift.  I don't want to invest a lot of money into a craft hobby when I could lose interest in it in the next few months.

This isn't to say that all interest in an old obsession is gone.  I still hold a place in my heart for each bygone era of interest.  Cooking, particularly baking, is still a hobby and I shiver when I see wolves.

While boys with AS can major in their interest and know that they'll probably be into it for the rest of their lives, I had to choose much more carefully.  I never know when I'm going to fall out of love with my interest and it would be a waste to spend four years at college just to hate what I'm doing when I get out.

Life is a journey.  I'm confident that I'll find something to stay in love with.

Friday, October 1, 2010

My Journey, Part 2: Diagnosis at last

((Sorry for the weirdness with the note at the top of my last post - I didn't realize I hadn't put this out yet!  Dang drafts.  Anyways, here's the second part of my story.))

By the time I hit middle school it was clear there was something going on in me, something that wasn't quite right.  I really hadn't grown up from Elementary.  While my peers were awkwardly moving into adolescence, rebelling, creating themselves, I was playing with Barbies and being slightly moody when interrupted.

In sixth grade my parents began to take me to specialists for a diagnosis.  I'm not sure what prompted them and have never asked about it, but I was curious as to why they were bringing me into strange buildings to talk to odd people about myself.  The first diagnosis was depression, and the second was Attention Deficit Disorder (ADD).  At the time both were pretty accurate - I couldn't pay attention in class and was becoming depressed because of the near-constant teasing from the other kids.  However, they weren't the real problem.

Near the end of the year, a woman came into my class and asked me to come with her.  I didn't know at the time that she was the school psychologist.  For the next few weeks I spent several hours a day in a tiny office working on exercises, not really knowing what I was doing there or why I had to take these tests.  The tests were bizarre to me, a combination of math, picture and emotion analysis, shapes, logic exercises and reading comprehension.

At the very end of the year the true diagnosis came out - Asperger's Syndrome.  They also told me that I had an IQ of 127.  I don't remember exactly who told me or when, but I do remember my parents saying that they had ordered a book for me on it and that I would be in different classes next year.

After reading about what AS is I agreed that the diagnosis was accurate - I saw myself in the criteria.  Now I had a name for my weirdness.  If you've ever had a diagnosis after wondering about something for a long time, it's a very relieving feeling.  It gives you power and allows you to connect to a community of others like you.

Next year I'd be able to use this in a new classroom of others with the same or similar diagnoses.

Next Week: Life in the AS classroom