Tag Archives: Autism

I have “high functioning” autism and you’re saying ‘hi’ to a stranger

I was diagnosed with autism in my early adulthood by specialists in the field. And then I participated in a series of experiments my local university was running that led to my diagnosis to be confirmed. I have autism. No matter how outgoing I sometimes appear on the outside, I have some very well hidden classic autism coping mechanisms.

I’m an adult now, finished school. I learned something while I was in school. I learned that most conventional university experiences are full of noise, full of people, and full of a crowd of young people moving as one because they actually understand instinctively what a party is, or what a get-together is.

I would be perfectly content if it was acceptable to sit at the edge of a party or just outside it, far enough from the noise, and be part of it by solitary enjoying the proximity. That’s where I feel like I’m part of the party. Not in the middle where there is too much input to string two thoughts together and my head feels like an electrical short circuit. I love to listen. So many autistic people I talk to want to be part of it, but just because we enjoy the fringes doesn’t mean we’re not enjoying it at all. I enjoy the fringes the most.

Now that I’m not required to sit in rooms with hundreds of people talking, listening to things that my auditory processing can’t make sense of because the words can’t compete if the air conditioning is too loud, or someone is eating two seats down. I’ve found that I relate to the world in a different way.

I spend almost all of my time alone. An NT person would assume I’m sick. Maybe depressed. And I do have bipolar disorder as a comorbid which adds a new flavor to this, but frankly, I just like to be alone. For me, in these years since graduating school where I’m no longer required to be part of a crowd constantly, I’ve learned that I am much healthier when it’s just me. I can keep my emotions regulated. I can recover from a meltdown – not only that, there are fewer meltdowns because I’m dealing with less at a time.

When I was a kid, the way I’m living now would have seemed like a catastrophe. I wanted to look normal, be normal, live normal. Not this 33-year-old semi-dude (nonbinary but that’s another blog post) who spends at least 85% of his time alone.

I used to dream of the day I would like going out dancing, going to parties, hanging out in large groups. The older I get, the less I want that. The older I get; the more content I am with myself.

And I’m not one of those quiet people who avoid social interaction at all cost. Theatre has always been my deepest interest, right from childhood when I couldn’t talk to people and it caused me so much stress that my dad started writing me scripts. They worked so well that I started writing my own scripts. I have this whole script system laid out in my head like a flowchart. All the easier stuff, pleasantries are there. Conversations with cashiers like speaking on the weather or what holiday is coming up are there.

And then there’s the specific situations like an outing with a friend, or a volunteer job. Those take time to create and are more involved. There are more variables and I write scripts for every variable I can think of.

Once I’ve got scripts, I play the interaction in my head. Visually. This comes from theatre training too. How close will I stand? What will my hands do? What door will we enter? Walking, or standing still? What are the escape exits just in case? I’m lucky enough to have been there before to have a visual picture of the place in my mind, it’s like playing barbies in my imagination.

At the same time, no one is aware that I use so much mammoth preparation for something as small as a coffee chat. So when I get tired easily, or upset, or I need to step outside and collect myself before continuing, I’m always afraid they will smell the different on me. It pays to be an undercover autistic, because we bring so much innovation and views that others might not to projects and our work.

Until.

Until you reach that point where pretending for so long has eaten away every last bit of fuel you’ve been putting into performing your part as non-autistic.

I fly under the radar very easily. I have learned to socialize well, and as part of that I’ve developed an attitude of “I don’t care what they think” which leads to genuine reactions on my part. Usually only people who know autism can see it in me at first glance. But just because I can mask the problems for short times, doesn’t mean they’ve disappeared.

I’m going to write a part 2 about what I’ve learned about working and living as an adult autistic as safely as possible, as openly as possible. Because burnouts can change your life drastically.

Stay safe, everyone.

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Autistic Inertia

Autistic Inertia is basically a state of wanting or needing to do something, but being completely unable to do it, almost like a paralysis.

There is a good article about Autistic Inertia here: http://archive.autistics.org/library/inertia.html and one of the examples it gives is:
-Wants to do math homework
-Is frustrated about not doing math homework
-make elaborate plans to do homework
-STILL does not do math homework.

Now one thing that non-autistics might have trouble understanding is, is that this is not for lack of wanting. It’s because of an error in processing. Or, the choices are too arbitrary. Or planning and going through sequences of steps is difficult.

This is how Autistic Inertia affects me. I sit in my room. I should be doing something, I want to be doing something, but I just can’t get started on anything. I end up sitting there doing nothing, or sitting and stimming. And it physically hurts, sitting there knowing you have a few hours to do what you want but you can’t get off the chair and start doing anything. And I don’t even know what I want to do. I literally feel inert, like I can’t move. My brain feels like it’s being contained or bound, and when I think about doing something it pushes against those bounds. It’s a disconcerting feeling.

I’ve tried tightly scheduling my day with a different task every hour. That worked somewhat, but the schedule got messed up around 2 pm and I had to abandon ship, with much gnashing of teeth.

Another way inertia can hit me is when it’s like my thoughts just dried up and went POOF. I enter some sort of fugue-like state. And I’m doing nothing, or I’m doing some action repeatedly, or I’m trying to follow some sequence of actions but they are not the ones I had intended on. And then I come to, after either seconds or minutes, and say “Oh, I just forgot what I was going to do.” And then I find it extremely hard to get started again, partially because I want to know what I had intended to do but that memory has burned up.

My current method to try and catch my free time paralysis-inertia is to figure out if there is a task my inertia won’t interfere with. Because really, free time gives you a lot of different choices so maybe the one I can do just hasn’t entered my brain because I’m too busy trying to force myself to do something else.

So I’ve made a list, on an 8.5 x 11 sheet of paper. I used the computer to print out, in bold letters, anything I’d like to do during my free time. “Orchestration Assignment” (that’s actually one I HAVE to do), “Math Book”, “Cleaning”, “Minecraft”, and stuff like that.

I think my inertia was a processing problem, I was having trouble connecting from “free time now” to “what should we do?” so I was perpetually stuck at “free time now” which left me frozen, unable to do anything with this free time. My list brought me back and reminded me “this is what free time means” and then I had every activity in front of me to choose from.

So I connected the link. I fixed the misfire. And my brain train is running unhindered again.

Most of the time.

Autism and Co-Morbids

It’s one of those days where I have to remind myself that things can be worse. Yes, I have a mental illness, but I have not yet been homeless, or cast out by family. No one has refused me entry or service because I was bipolar. Social services is another issue. I HAVE been barred from getting help for my bipolar disorder because I had “too much support”, and I HAVE been barred from most help for autism for being “too high functioning.”

It’s a problem a lot of autistic adults face. Once you’re out of the school system, support for your differences is few and far between. And it’s not like we stop being autistic once we graduate high school. I wasn’t even diagnosed until college, but the diagnosis was mainly based on clear signs from childhood. But many autistic children learn ways to mask the most glaring aspects of autism by the time they are an adult, and so, they function for a while and then burnout. I have heard other autistic people talking about autistic burnout, trying to pass as “normal” for too long.

I wonder how many people with autism have a comorbid mental illness and I would like to talk to them. When things get dark and you can’t breathe, how do you reach out to a friend when your definition of friend is shaky and you don’t know how much weight is appropriate to lean on someone and all of the uncertainty makes you not reach out at all? Does anyone else understand how scary it is to be darkly depressed but completely isolated?

I don’t *not* come to you because I won’t. I’m not proud. I want help. The reason I don’t come to you is twofold, both related to autism. First, childhood bullying. Simply put, I’m scared. Second, I don’t know what the rules are for asking for help. I don’t know what is too much. I don’t know how to start the conversation.

I think this would be a really good skill to start teaching autistic children. In a study cited by the National Institutes of Health, 70% of the kids had a comorbid disorder, and 41% had two or more. Most common were social anxiety disorder and ADHD. Things like bipolar disorder and depression usually have a later age of onset, or at least adulthood (though there are childhood cases.) Where are the studies of autistic adults and their comorbids?

My bipolar disorder and my autism interact directly. When I’m depressed, I can’t handle chit chat nearly as well and am either very quiet and not participating, or I’m cutting straight to the point. When I’m manic, my sensory sensitivities are turned up even higher, the closing of a door becomes a gunshot and I can practically hear the NEIGHBOUR’s TV.

But asking for help is hard, for non-autistics, but even more so for autistic people. And I think the general population tends to operate on “Oh, it’s his life. Maybe he’s having trouble, but if he needs me, he’ll ask.”

Not necessarily.

I’ve spent nights choking as I tried to breathe, staring at the phone but unable to call because I DIDN’T KNOW IF I WAS ALLOWED.

Autistic adults with mental health comorbids: I hear you. I know it’s hard. I know it’s scary and isolating. But we will get through.

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.

Self Esteem

When I was a kid I was both hurt by people in power and bullied by peers. As a kid I wasn’t very self aware and didn’t realize I processed things differently. When the hormones of teenagehood hit, I became painfully aware that not only was I “weird”, different, a convenient target, I also thought there was something fundamentally wrong with me to cause people to mistreat me so much.

They put me in smart kid classes because I could spell, read, and do math beyond my years, but half the time my different way of processing things meant I didn’t understand conversation. I felt like a dumb kid pretending he was smart. I was convinced they had made a mistake, and eventually, my processing skills did not advance at the rate of my age mates and I was no longer a “smart kid”. I almost failed regular math in grade 11 and 12.

I internalized the thoughts that I was worthless and that no one liked me for a long time. It led to some hard roads. A combination of my worthless feelings and my autistic obsessiveness led me to develop anorexia. It was going through treatment for that that started me on the path of really being able to take an objective look at myself.

It’s been five years since I wrestled my life back from anorexia, and slowly since that time I’ve been able to change those old messages.

It wasn’t my fault I was a target.
I was not a dumb kid.
There are people who appreciate me, weirdness and all.
But best of all, I appreciate me. Weirdness and all. Especially weirdness.

It was hard to get here. I’m not even completely sure how I did it, but it took some emotional maturing, a better understanding of myself, and a few experiences of community.

People have said to me “wow, you’re really self aware for an autistic person.” I don’t think autistic people are any less self aware in general. Some are and some aren’t. I think it’s just that I’m more self aware than the average *any* type of person. My life led me to be that way. In order to survive, I had to learn to examine myself and understand. I wasn’t born with this understanding. I worked hard for it.

And what I’m finally starting to develop after more than 25 years, is a sense of self esteem. As I start to understand my own strengths and limitations, I start to see the beauty in my life. As I start to lovingly project the real me to the world, people start to like me.

It was never going to just bang down my door as I hid in the dark. Life does not come to you, you have to seize it for yourself.

I’m not a victim any more. I think I’m a pretty cool guy, and if someone doesn’t agree, that no longer diminishes my own flame.

It took me 28 years to get to this point. I can’t wait to see what’s next.