Autism and special interests

The Hospital Series will be back. But we’re going to take a break from bipolar and go back to autism for a post. And something a little happier, or at least, something that makes me happy.

In the autism community they’re called “special interests”. Most autistic people have *something* they are very interested in. In the DSM (Diagnostic manual), they call it “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus”

Abnormal in intensity or focus.

Well let’s take one of my own special interests for an example. The biggest one. Musical Theatre. Intensity? Well, let me describe the feelings that come along with special interests. Just listening to a cast recording makes my heart rate speed up, my breathing catch in my throat, and I get a general feeling of wanting to break out of my skin. I get obsessed with this cast recording and want to spend all my time absorbing myself in it. I want to know every word, every syllable, every note. I want to know the history of the production, the cast. The NEED to know everything about it takes me over and I can no more stop my research than I can fly. The interest is ALL I want to do all day and if I actually have a free day to spend on an interest I might even forget to eat. It’s the only thing I want to talk about. I still struggle with realizing that other people just aren’t as interested as I am and may not want to talk in as much detail about it, if they want to talk about it at all. That’s an example of intensity.

Focus? Well, in some cases my focus is very narrow. Like a specific song. The song “Nobody’s Side” from the musical Chess, for example. I know which actress sang the song on each Cast Recording and how long each version is. When I’m distressed, I line them up in my head from shortest to longest.

Currently I’ve discovered the Off Broadway 2012 version of the musical Carrie and it’s started an Asperger’s obsession cycle…. For me the cycle goes,

Around 6 o’clock yesterday evening I discovered the cast recording for the musical. Immediately I found the entire 2012 performance on YouTube and watched the whole thing TWICE. Then I started researching the history, how the 1988 version of this show flopped and lost a lot of money, who the different cast members were…

This researching can go on for hours. It’s still going on the morning after. Because I just NEED to know everything about it and put it in its little box in my brain.

And it’s never consistent how long the obsession cycle lasts. As far as musical theatre in general goes, that’s been there since I was 5 years old and is still going strong. But the individual musicals cycle, and eventually a different musical will ignite the cycle all over again.

Occasionally a non musical theatre subject will become a special interest. Past ones have been tornadoes, or the computer game Minecraft, or Toronto Island. I was obsessed with running for a while, that was a good one. But they never replace the main special interest, musical theatre, the thing I would love to be able to talk to everybody about for hours.

Recently a professional suggested to me that musical theatre was an odd special interest for someone on the autism spectrum. Especially since I also like performing.

In response to that, I will say that I have heard a very wide range of special interests from people on the spectrum, and as for me, I was drawn to acting first because it was a natural extension of loving to listen to the musicals, and second because I wanted social contact (YES people with autism want social contact, they just don’t know how to get it). So if I was acting, I had contact with my cast. And if I wasn’t good at relating to the people, at least our characters interacted. I don’t understand why acting would be weird for someone with Asperger’s… the social relationships between characters onstage are only onstage so they end when you go home and you don’t have to think of what to say because there’s a script. And while you’re studying it you learn what motivates people and why people react the way they do. Sounds perfect to me. And I CAN relate to theatre people. I usually get along with theatre people and they get or tolerate my quirks.

So special interests really are something special. At least for me as an autistic person, they brighten my life. Even if they sometimes have a feverish intensity, I always have something to be occupied with. And absorbing myself in them makes me feel fulfilled, hopeful, and satisfied.

Some teachers and parents think autistic children’s special interests should be extinguished because they’re “not mingling” or they’re spending too much time on it. Well, teachers and parents wouldn’t understand unless they were on the autism spectrum themselves. I do admit, sometimes I spend too much time on my subject of obsession, but if that’s a problem, schedule some special interest time and schedule some homework time. Don’t take it away altogether. That would be like asking a bird not to sing.

And if the “problem” is that the child is spending all his time in solitary pursuit of his interest, try and open it up. If he’s interested in comic books, take him to the comic book store and talk to the people there. Find an interest group for him, if you can.

I don’t know if non-autistics have anything like autistic special interests, but I would say I would miss it a lot if it was gone.

So then, who the hell am I?

I promise I will return to writing the hospital series once I feel up to it. But today’s blog will focus on the head trip that bipolar episodes bring on.

August of this year was great. I knew who I was. I was confident, happy, and I had people around me. So much of my life I’ve been alone.

September of this year put my emotions to the test. I grew even further, but was full of conflicting confidence and disappointment.

Somewhere around the end of September the mania started. The person who I thought I was was still there, but he was magnified 1000%. Who knows who triggered it? Another one of my medications, school, all the mental energy I was putting into auditions that only ever said no? And the “no”s confused me because all the feedback was good, excellent, even. So maybe a big ball of conflicting emotions was one part of it.

Then, somewhere around the middle of October, I crashed into depression. That’s usually what happens to me when I have a manic episode. It’s followed by a depression. Sometimes not so severe but this one was very severe. On the 22nd I was hospitalized. I got out yesterday.

And I find myself wondering who the hell I am?

Was that content, confident, exuberant, even, guy that I was last August really me?

Is it possible for me to have exuberance without having mania?

Will I have to give up natural excitement and exuberance in order to keep from getting sick?

I liked manic Jay before it got too far and I started with the delusions of grandeur. But that’s not who I am… that’s what the disease makes me.

Depressed Jay is not me. I have too much love for things to be reduced to that.

So is post-hospital Jay really me? I don’t feel depressed, but I don’t feel happy. Everything is just kind of ehh. I can find pleasure in things if I try hard enough.

My doctor would say that the levels of medication in my blood are just starting to get to a therapeutic level, and that I should wait, hold on, whatever.

So say the medication starts working. THEN who will I be?

The Hospital Series: Part 1

If you read my last post, you know I was going down fast. Here’s the thing about bipolar depression – it gets bad very quickly. On October 22nd, at 9 in the morning, I saw my psychiatrist and she admitted me to the hospital.

There were no beds available yet, though, so I curled up in the fetal position in the corner of an empty office to wait for them to find a place for me. Finally at 3 in the afternoon I was escorted to the hospital and admitted to the psychiatric ward.

There’s something that always happens to me when I get admitted – for the first little while, there is just RELIEF that people are watching me and keeping me safe from the things I could do to myself. I remember friends visiting my first night, and I almost felt normal, like we were hanging out. Not like someone who had been composing music for his own funeral the night before.

But then, the relief passed, I realized that I still felt like my body was filled with lead, and I pretty much didn’t get out of bed for a couple of days. I really have trouble remembering some of this hospitalization, because I was SO depressed.

I’m going to talk about the hospital in short snippets, because it’s too much all at once.

Some Psych Hospital Survival Tips:
Stockpile towels. The nurses are always busy when you want to take a shower.
Don’t eat the chicken pot pie.
I will talk about Asperger’s sensitivities and psych hospitals later, but BRING EARPLUGS.
Sweatpants are a better choice then jeans because they might take away your belt and then your jeans will fall down.
You will have days where you feel great and can exercise, go to groups, do laundry, socialize…and then you will have days where you stay in bed all day.

I’m still in the hospital, but have gotten to the point where I can come home for a few hours. More blog posts are forthcoming, hopefully better ones… my brain is still too fried to be prolific.

Dante

Dante Alighieri wrote an epic poem called Divine Comedy. The first part of it is probably most well known, and that is Inferno. The short version is:

Dante ends up lost in a wood, and despairs that he cannot find the way to salvation. Conscious that he is ruining himself and that he is falling into a “deep place” (basso loco) where the sun is silent (l sol tace), Dante is at last rescued by the Roman poet Virgil, and they begin their journey through Hell.

The inscription on the gates of hell is “Abandon Hope, all Ye Who Enter Here”.

Dante and his guide Virgil travel through all of the circles of Hell, each set aside for a particular sin, and each sinner being punished and tortured in a specific way.

At the centre of Hell, Satan is imprisoned in ice, weeping and trying to escape, but his escape attempts trap him further. Dante and Virgil escape through the centre of Hell by climbing down Satan’s fur and pushing through to the other side of the earth. Dante feels the change in gravity and is afraid they are going back to hell, but they emerge on the other side just as the dawn is coming.

I’ve documented my manic episode. Now, this is my inferno. Now it’s my turn to journey through hell. At the beginning of the week I could tell I was “falling into a deep place where the sun was silent”. Imagine that. Imagine a hole so deep you couldn’t see the sun. How trapped would you feel? How claustrophobic? How long could you hold on to hope?

And since then, I’ve been descending through hell. At first, my concentration started going bad. Well, it never really recovered from the manic episode. Then, my motivation started lagging. It started to feel extremely difficult to just get out of bed, to go to class. Unless you’ve felt bipolar depression, you will not understand how futile it feels when someone tells you to just go to class, when you know that you have very precious little energy and if you expend it on class, what’s going to keep the dark thoughts at bay during the night when you’re not in class?

I am constantly tired. I have trouble sleeping at night, I keep waking up, I stare at the wall. Because of this, I spend a lot of time during the day in bed, staring at the wall, or the ceiling.

My thoughts are slower, it takes me longer to think of the words I mean. It makes me feel dumb. I don’t understand things, no matter how many times you explain them.

There is a pervasive sense of agony. You know those old commercials, “depression hurts”? YES IT DOES. My body shakes and my throat clenches and I can’t eat and my chest aches and I can’t breathe and I can’t cry.

And I constantly, constantly, just want to lay down and give up.

No, not “call the ambulance” give up. I’m committed to something on Sunday which is enough to pull me through. I see my doctor on Monday and she will likely hospitalize me then. I will lay down, give up, let the professionals take over, and get through this.

It will end.

It will end.

I feel like it won’t, but

It will end.

And thank you to my guide “Virgil”.

World Mental Health Day

Today is World Mental Health Day. I don’t know the stats for every country, but here in Canada, 1 in 5 people will experience a mental health disorder in their lifetime. So for two reasons, I am going to expand the scope of this blog.

The first is because mental health advocacy is important. A lot of people have misconceptions about or don’t understand mental illness. This misunderstanding leads to hurt. Families are hurt. Sufferers are hurt.

The second is because I just went through something profound, and god damnit I need to talk about it.

In addition to having Asperger’s Syndrome, I also have bipolar disorder. I was diagnosed when I was 24, in 2008. A manic episode led to a hospitalization, which led to eventual depression. While I was hospitalized, quite a few doctors consulted and the consensus was Bipolar I. There are two types of bipolar diagnoses, I and II. II is more mild, and usually doesn’t include manic episodes, only hypomanic ones. Hypomanic means sub-manic. In the extremes of Bipolar I, the diagnosis can also include psychotic symptoms such as delusions and hallucinations. I am one of those statistics.

I was diagnosed when I was 24. I’m 28 now. That’s 4 years of learning to deal. I’ve gone from being a hospital patient to actually functioning at university. And for the last 2 years, I’ve been completely stable. Not a single episode of mania or depression. Until the beginning of October.

There is usually a build up to a manic episode. There were signs I missed. I started exploding with poetry. I got a tattoo, which was a little impulsive. I was confident and happy but happy is ok and happy is good so it’s hard to miss the line where happy turns into HAPPY!!! and all of the sudden you’re superman.

So things really started slipping on Sunday the 30th of September. I barely slept that night. As Monday wore on, my energy levels kept climbing. I still wasn’t sleeping. I started writing lots of music. At first, it was good music. I took a string quartet assignment that we were basically assumed to add a second violin part to and choose which part to double, but instead I rewrote the entire thing and added running eighth notes everywhere to sound like rain falling. I actually thought I could do better than Handel. Like I said, at first, it was good music. I just got that assignment back and got 100%.

The energy levels of someone in a manic episode are insane. I wasn’t sleeping, but I felt like I could run a marathon or two. I am usually pretty shy but suddenly I was talking to everyone. EVERYONE, whether I knew them or not. I was talking fast. I was intense. My attention span eventually dwindled until I couldn’t spend more than 5 minutes on something.

The only thing I COULD focus on was a string quartet I had started writing. I had based it on the interval of the perfect fifth, and I was convinced that there was some secret in that interval and if I figured it out I could write a piece that would revolutionize music as we know it. This string quartet kept getting more and more complex. I need to bring the sheet music to my prof so we can make sure a human being could still play it.

So I wasn’t sleeping, I was barely eating, I was talkative, I was writing music, I was obsessing over intervals. That idea that I needed to figure out the secret of the perfect fifth? That happens in mania. It’s a delusion of grandeur. But it got worse.

Eventually by Friday, I knew I was approaching that line. Bipolar people will understand the line, the line where on one side you know you’re acting abnormally and probably need help, and on the other side you’re blindly unaware that you’re totally insane. But I’m in Canada and it was Thanksgiving weekend, so I couldn’t see my psychiatrist. Instead, I decided to see if the hospital could give me something to help me keep a lid on it until I could see my psychiatrist. By this point, the mania had ramped up so much that I COULD NOT SIT DOWN. I waited for the bus while pacing, waited in the hospital waiting room while pacing (after telling the admitting person EVERY THOUGHT IN MY HEAD EVER), and eventually whipped out some manuscript paper so I could keep working on the perfect fifth secret. I’ve read over all the music I wrote on Friday night, and it is unintelligible. My brain was churning out insanely fast thoughts, and they just didn’t make sense. And the delusion was deepening. After seeing all of the sick and hurting people in the hospital, I was ABSOLUTELY SURE that I needed to figure out the fifth secret so I could heal everyone’s pain. I personally felt their pain and felt even more driven to figure out the secret so I could help them.

Eventually a psychiatrist saw me and within 5 minutes told me I was manic. I explained about the fifth thing to him and he said it was part of the mania. He made sure I was going to see my psychiatrist ASAP and prescribed me something until then.

And today is the first day I’ve really felt normal again. Normal is subjective, and it’s pretty hard to define, especially when you’ve been manic for more than a week. I still have trouble concentrating, I’m still a little distractable, but I don’t feel like I’m going to explode. I also don’t feel like I’ve been personally chosen to save the world.

But why am I going so public with this story? I know that some people who know me personally read this blog. I think I’m doing it because people need to realize that EVERYONE has a secret story. I am lucky that the worst of this happened during Thanksgiving weekend and I was largely alone and there were not very many people around to alienate, but during the week before, when things were ramping up, nobody even knew that this was something more than just me being hyper.

EVERYONE has a secret story. There are so many things, especially when it comes to mental health, that people don’t want to talk about. If you’ve read all of this and want to write me off as a crazy person, go ahead. But I bet that if you know me, you’d never have guessed I have this story to tell.

Please, PLEASE, don’t be afraid when it comes to mental health. Talk to someone. Talk to everyone. Get these issues out of the dark so that people don’t have to suffer in silence any more. I am not afraid.

On Eye Contact

Some people get offended when you don’t make eye contact with them. I was at a store today buying ear plugs (sound sensitivity blog post coming soon) and didn’t make eye contact with the cashier. I may not pick up on body language and non verbal cues instinctively, but I’ve been alive long enough and accumulated enough experience to surmise that when a person’s mouth forms a certain shape and their voice sounds a certain note or range of notes, that might mean you have offended them.

So here is a blog post devoted to eye contact. I can’t speak for every autistic person. The saying goes, if you’ve met one person with autism, you’ve met one person with autism. The spectrum encompasses a wide variety of presentations.

But for me, a lot of my world is turned up and seems very intense. Something that a lot of autistic people experience are sensory sensitivities. These differ among each individual person. Some are very sensitive to the flicker that florescent lights emit. Some are sensitive to the buzzing or humming noise lights can make. Some are sensitive to touch and can’t stand the feeling of shirt tags or sock seams. Some can’t stand certain noises.

The important thing to keep in mind, something that even professionals tend to mistake, is that it doesn’t mean EVERY autistic person is going to have EVERY sensitivity. Some autistic people are even HYPOsensitive (undersensitive), for example, hyposensitive to pain.

I will go more into my specific sensitivities in the next blog post, but imagine that parts of your world were ramped up. Imagine that everything looked super vivid or bright and it exhausted you to look at it for long. Or you picked up every little sound and it was impossible to concentrate because you heard EVERYTHING.

And then imagine dealing with people. People are loud, confusing creatures. At least for me, I am usually struggling to keep up. Maybe I can’t focus on the conversation because too many other sounds are happening nearby. Maybe I don’t understand the other person correctly because I’m not reading the body language, and am hurrying in my thoughts to try and decode what they’re saying into something that makes sense to me. Maybe I’m in a group of people and am fighting against shutting down because there is just too much going on.

And they expect me to add eye contact? I actually don’t know how it feels for you, but for me, looking into another person’s eyes and having them look back into mine feels like I am touching a hot stove. I am being burned. It’s like an extra jolt of overwhelming input – I already described how sensory sensitivities can be overwhelming. When there is a lot going on, SOMETHING has to give.

And that’s why sometimes I can make more eye contact and sometimes I can make less eye contact. Sometimes the other input is less, and I can briefly endure the jolt. I do it to show you I can speak your language for short periods of time. If I need to underline something with body language, and the other demands on my senses aren’t too intense, I’ll look you in the eye. There’s another myth – it’s not true that ALL autistic people NEVER make eye contact.

But a lot of time that you think I’m looking you in the eye, I’m probably looking at your nose, or your mouth. I watch mouths a lot. I’ve lived a lot of years and went through enough childhood experiences with adults yelling at me to “Look at me when I’m talking to you” that eventually I learned to pacify, if not actually comply. I do it to make you happy.

What would make me happy? People clearly spelling out their intentions. People  who don’t judge if I need to turn the noise down a little. People who don’t get offended if I can’t figure out how to reciprocate appropriately. The biggest barrier for me to making close friends is that I don’t know how to appropriately reciprocate a friendship. There needs to be a book for that.

It would be nice if there was some more understanding out there.

What Isolation Means to Me

I am going to repeat something that I mentioned a couple of entries ago: Autistic people get lonely. You might think the way to deal with that loneliness is simple – go be with people. But for someone with autism, it’s a little more complicated than that.

If there is one thing I’m obsessed with and will gladly absorb myself in for weeks and weeks on end, it’s musical theatre. I just finished a run of a play (the run is what they call the time the play is on stage) where I was acting. I was socially successful in this group of people, largely because theatre is what gets me engaged. When I’m immersed in my interest, that is when I’m truly engaged with the world. Most autistic people have an interest or two like this.

But I’m not always that socially successful. Just today I went out for lunch with a group of people with autism, and the restaurant was very crowded and very loud. I barely spoke a word. I couldn’t formulate thoughts. I couldn’t contribute to the conversation. I wasn’t even AWARE of the conversation most of the time, I was too busy trying to calm myself down and stay in my seat.

The functioning level of people with autism can fluctuate. People who see me during a theatre show have seen the REAL, engaged me. But when something causes me to disengage, be it noise, or light, or overwhelming emotion that I can’t even name, I’m not nearly so functional. And sometimes the amount of extraneous input that causes me to disconnect can be small, sometimes I can tolerate much larger amounts.

I mentioned that I just finished the run  of a play. This means, all of my social connectedness and the things that make me engage with the world have ended. So I’ve been feeling sad. I’ve been feeling lonely. I’ve been feeling isolated. I still engage with the world. I go to the practice rooms at my university and sing, and get ready for the next theatre experience, for the next audition. The next chance I’ll have to feel those social wires connect. But I don’t really engage with people very much.

So I guess what I know is, it’s hard for me to connect with people. I don’t even know how to keep a conversation with non theatre people going, never mind make friends with them. So my cure for isolation is to immerse myself in my interest and the people will follow?

I hope so. Because the solution to loneliness for an autistic person is not as simple as just going to be with people. You have to go be with accepting people. I was successful in the cast of the play because they KNEW I had Asperger’s, and even if they didn’t know exactly what that meant, they didn’t discriminate when I asked them not to whistle, or when I needed to turn the music down, or when the audience was too loud and I had to plug my ears backstage. They didn’t care if I didn’t understand pop culture references unless they related to Broadway, or that I turned several conversations into conversations about musical theatre.

So of course it’s a culture shock when the show ends and all of the sudden you barely see those people any more. For someone who has trouble making friends, it makes the isolation so much harder.

Temple Grandin is a big advocate of letting autistic people thrive by building a life from their strong interests. I support this idea. Because the place I thrive is in the theatre. I saw that clearly this summer.