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Something missing…

Ideas on a spiritual solution to our attitudes towards the way we are.

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I believe there is something missing in the discussion about autism, and I’ve decided to write about it. 

This… is a strange place to be, and a place I find myself often. If you want to accomplish something new, something that’s never been done before, you’re just not going to get that feeling like you belong. If you’re going to take the risk and do something different, to add something important to the mix that may really help out your fellows, there is a huge chance you’re going to miss out on winning any kind of popularity contest…

… and really, isn’t that one of the core issues we as autistics face? 

So here is my hypothesis: a lot can be gained from a spiritual perspective of the autistic human condition. That’s what my core experience has been. It seems to be an unusual way to deal with my autistic situation, but I’m finding it works better then anything, and I’ve come a long way through a lot of other experiments to get here. 

I almost died trying to cure my autism, before I even knew that was what I was trying to cure. I’m glad fate had me try and cure it through benzodiazepines, love addiction, codependency, and alcohol, because if it hadn’t gotten as terrible as it did, I wouldn’t have gotten to the solution I did. Now I don’t want to cure it at all, because I’m starting to see it as a whole thing – like all things in life. It has good and bad points, depending on how I look at these points. 

I don’t want others to have to get as low as I did. Delirium tremens and suicide attempts are something I’d like to spare you. I’m just one small person, and none of the ideas I’m going to talk about are new at all… I just think I may have a perspective that other may not have, and I have experiences that I’ve never read about before, so I may be able to help. If I can even help out one person in this world, it will be worth it. So, here it goes. 

Any of you who are familiar with AA and 12 step programs won’t see anything new here, but I’ve also read and been told that AA and 12 step work has been a disaster for most people on the spectrum. I can see why, and I can see how I’ve had to modify my own 12 step experience in order to survive alcoholism. This blog will in part be tips and pointers on how to navigate – and utilize – the 12 step world in an autistic way. I’ll also cover how to make AA and 12 step meetings and work accessible to people on the autism spectrum, as well as those with sensory issues related to autism. 

My other goal is to present a 12 step program for facing the difficulties of autism without having any other addictive issues. This may or may not be a successful attempt, but I feel it’s worth a try, since the basic 12 step principles have helped me so much. These are working notes of a book I plan on putting together at some point. I’ve decided not to worry if anyone ‘steals’ my ideas – because they are not my ideas in the first place. This is just how I’ve interpreted ideas that I’ve seen others use successfully for addiction to many things – chemical and non chemical. More importantly, it’s a system for dealing with things you cannot change, so you have more power to change things you can. 
As an autistic, there are things that I will be forever unskilled at, and things I excel at. Knowing what is what just might bring me to a deeper understanding of my existence, and a reframing of my life from a life sentence, to a satisfying adventure.

In the late thirties, alcoholism was considered a condition with no cure, and alcoholics were often institutionalized for life. They often died at their own hands. In order to save himself, an American man named Bill W. borrowed ideas from an organization called the Oxford Group. He had seen these ideas work in his friend, who was astoundingly bright eyed and sober. He realized he could create a framework that would save himself and his fellows from misery, without having to change the institutions of the time. 

I believe that complete independence like this could really help our autistic community. The energy we spend trying to change the institutions is still valid, but why not implement a grass roots change as well? I know a lot of my fellows are suffering, specifically from loneliness. As Bill W and others noticed, alcoholism and addiction was and is primarily a disease of loneliness. And, for their dilemma and ours, I have found there is a spiritual solution. 

There is a lot anyone familiar with the big book of Alcoholics Anonymous will find redundant here, and a lot I won’t be able to see I’m not covering for those who have no idea what 12 step work looks like. Again, that’s why this is a work in progress, and one I want to separate my ego from. Please comment about your own experiences and ask questions! 

The only way this project will be a success is if it contains many anonymous voices – just like its predecessors. I may not have the ability to address all questions, but it will be really helpful to me and anyone reading this to be told where my blind spots are. This is already a group effort – but not everyone involved has the time or the resources to write every day. I do have that time, and to continue to not use it would be to ignore the great blessings I’ve been given. 

A quick note about spiritual language and subject matter: there is absolutely no requirement to adhere to any specific spiritual group or dogma in this or any other interpretation of 12 step work. Anyone who has told you otherwise is mistaken, and quite possibly trying to gain power or manipulate you in some way. I live in an area that has a majority of Christian practitioners, but I am not of that faith. I actually swing towards the Buddhist end of philosophy… so if anything I say doesn’t sound neutral, please point it out and I will deal with it in the final work. I don’t want to give this project a religious bent of any kind if it can be helped. 

Thank you for listening! I look forward to what may be next, and any commentary. I’m going to start by publicly working a set of steps with my autism in mind, and ill most likely be asking more questions then giving answers at first. 

Live long and prosper.

Your friend, 

Bird. 

Routine

This is my day.

I wake up every morning optimistic, but with a twinge of doubt. Sometimes the doubt is more then a twinge. Sometimes I think I might give up.

I think, “If I go out today, I will be exhausted and nervous by the time it’s 3:00 pm.” By this time, I have spent three hours in the neurotypical world. At this point in my education, in my observation of subtle human communication and behavior, I know I do not feel this way because I am depressed or anxious. I know now that my experience of emotion is not a “chemical imbalance” in my brain. Everything there is perfectly balanced.

What I am experiencing is a natural reaction to the subtle signals given to me by the people around me.

What they are saying is “you’re strange and you make me uncomfortable.” I know there is nothing I can do now to make them comfortable, and no amount of drugs in the world will undo how my body naturally reacts to this constant information.

Maybe, if I gain extraordinary skills, perhaps at the level of arrogance, I can just ignore it all and overcome it?

On some days I actually do give up at this point in the morning. Sometimes the exhaustion of knowing what I will have to go through if I go out into the world is so much that I just sleep the day away.

I don’t mean to sleep the day away. But my room is so quiet, the sound of the neighbor’s wind chimes is so pleasant, the light on the fabric of the sheets so vivid… that red.

——

So, my friends, lets talk about ‘autistic burnout’ and ‘executive functioning’, and how that can mimic and cause anxiety and depression, but how it is not anxiety and depression in isolation of, well, perfectly good reasons to be anxious and depressed.

One of the things that effects me, if not the absolute only thing that effects me, is my sensory experience of the world.

… let’s back that up a bit. How about I just take the leap and say this:

My experience of the sensory world, my experience of existence itself, is more intense and vivid then the experience of neurotypical human beings.

That essentially puts me in a different objective reality space then a huge majority of the population. I’m not delusional. A dog is not delusional because it can sniff out the drugs in a piece of luggage and I can’t. I am not delusional for being able to detect light as a visual sensation when a blind person cannot.

But when I am reacting to sensory input in a way that the majority of the population is not experiencing, they notice and react with subtle – and sometimes not so subtle – nonverbal judgment. I’m not ignorant to this judgment, I’ve just been ignoring it for my whole life…

… because I’m an optimist.

— —

I burn out when the sensory stimuli is too much, and I burn out even more so when the stress of constantly being noticed and judged comes in. I’m not only effected by the kind of judgment where people assume I am on drugs (there are, after all, much more people affected directly by drug addiction then autism), it is also that concerned ‘oh you poor dear’ judgment.

This became apparent to me when a spectrum friend of mine was speaking in front of a room full of neurotypical addicts and alcoholics. What I became aware of was that anxiety – that fear one gets when one is in social danger. I understood everything my friend was saying perfectly. All the NT people in the room did not. They were spending too much energy, at least, judging him for being strange, and making all sorts of sounds to express this.

I felt like a small rabbit, listening to a rabbit speak, surrounded by wolves.

And this feeling isn’t mental. It is my body reacting to real and clear danger. I am not actually a rabbit, I am human. And as a human I survive by being in a group of other humans. When those humans judge me or another one like me in such a severe way, and I am like this other person in a way I cannot control or change… well…

That’s scary.

And I’ve been feeling this way every day. For years.

Decades.

——

My friend Mary sends me a message today.

“Girl the routine gets messed up. My week is messed up.”

Of course it is. We are receiving a constant barrage from the world, from all the sensory information, and then from all the people who are reacting to us, reacting to things they do not hear, see, smell, touch and feel.

The routine allows for something to go forward no mater what. I have never been in the military, but I’m sure the reason they have such routine, the reason they practice the same scenario or event over and over is to allow them to do the same actions regardless of what is going on, being fired at or not.

As autistics, we never know when we will be fired at.

Routine isn’t pathological.

It’s a coping skill. It’s a very smart tool to use.

——

And so today I left the house, and I went to my usual meeting of alcoholics, but I didn’t go on my usual walk, because its so hot and the sun is so bright. I’m trying out a new cafe to write at. The one I have tried before is incredibly busy, and even if I use ear defenders and music, I can see the people moving around in my peripheral vision.

This place – the new one where I write this – still makes me nervous because if the incredibly fake and judgmental counter girl. It’s that kind of smile that is all teeth and no eyes, that kind of voice teachers use with small children when they are misbehaving, that cheerleader tone that is used to bully the rejected high school girls.

And I’m not reading too much into it. It’s obvious. To me it is completely obvious. It’s amazing how poorly most NTs are as actors. I guess it works on the other NTs. She might as well be asking me what the fuck is wrong with me.

I can hear her now through my ear defenders and music with a completely different tone.

It is all interconnected, the judgment, the sounds, the heat, the routine.

If only we could have some space. If only we could just be.

Think of the things we could do, if we never burnt out.

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The Birds of Paradise 

I’m around people so frequently… but they are not people, for the most part, to me. It’s like being in the jungle, one hundred very noisy tropical birds around me. They seem to know English, like parrots, but they don’t make sense to me. They say the words I know I have learned, but it doesn’t have content. How are you, I am fine, the weather is so cold.

Sometimes, for a few minutes, I get to talk to someone who makes me feel like I might actually be talking to a real human being. He sits across the table from me. I give him my drawings. It’s a strange situation, this Alcoholics Anonymous meeting I found three years ago. It’s like having the opportunity to go to school without all the pointless busy work. I can show up every day, possibly a couple times a day, and maybe… maybe… make some friends who will actually be friends.

Not bullies. Not those people who get close to you so that they can manipulate you.

But of course, there has been that.

Of course there has.

I was fascinated with the first one from the beginning. So few people in this world really stand out anymore. All the tropical birds want to look like one another. He was a black crow among them. He had one long strand of Mohawk black hair that shot up from the center of his head. He leaned back in his chair, or forward, with his hands set in front of his face, as if he were in prayer or deeply concentrating on something. It took me a year of looking to finally have the bravery to speak to him. When we finally did spend time with one another, we walked so far we nearly made it half way up a mountain pass. We watched the sun set in a golden field. It was so exciting and beautiful. He seemed so at home in the natural world. Like me.

Later he admitted that, usually when spending time with a woman, he was only waiting for the moment where he would get to have sex with her. He said I was different. He said he actually wanted to hear what I had to say.

It was the kind of complement you get, that feels so incredibly wrong, but you are already too entwined to do anything about it. 

He was homeless, living in a van next to a friend’s house.

But why was he in a van and not welcome in his friend’s house, on the couch maybe?

He was living with me within a week. It was winter. How could I possibly let him sleep in a blizzard in a van? It was three months before he started getting violent, before things started getting really confusing. I have to concentrate so hard to remember what happened for that year and a half. I know once he pinned me to the bed for half an hour.

This was before I knew about my autism diagnosis. When I had meltdowns, I felt like I was somehow victimizing him, like I always have, with everyone. One time I told him to slap me, to snap me out of it. He hit me so hard that there were bruises in the shape of a hand on my face. It took so much to break up with him, in the end. I tried hooking up with other people, desperately. It was to no avail. So many attempts, and I just got the point where I told him too much had happened, and he needed to stop contacting me. I don’t know why it worked that time. But it did.

The second one was sweet and nervous looking. Somehow he knew a friend of mine from a different town, and I was able to find him on Facebook. Sometimes I find it absolutely impossible to contact a person in the usual ways. 

Most times.

He was a heroin addict. One night he didn’t come home, and I wasn’t sure if I was going to see him that night, in a week, ever. We moved to his mother’s house and he broke up with me. I was told I had to leave in the night, in the middle of a meltdown. I still don’t know how I managed to drive an hour, and I don’t know why my brother just happened to be home, so I had a place to go. And I took him back. He did heroin for almost a month, and I took him back. He left in the night one day when I told him I needed to use my car to get to meetings. Everything of his was gone, I had no idea where he was. I was so worried. So surprised. And I would have taken him back a month later when I got ahold of him again, if I hadn’t had the flu, and had some time to think.

So here I am, sitting across from this new and beautiful man. Here he is, talking to me about Tesla. I give him drawings. It’s been motivating me to make my art, and I’ve been getting better at drawing because of it. And of course I daydream about spending time with him. I daydream about travel, being lazy on a Sunday, of watching movies, of walking with his dog, or other… more romantic things. 

But…

How many times? If I can’t know if I am reading someone well, how many times will it take before I just get lucky? If I can carefully watch someone for a year and still not know…

And so maybe this is it. Maybe this is all I can do, have a crush and give him drawings. 

I am so alone. 

I am surrounded by people, by these birds, by this noise. 

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An Open Letter to Mashal Mathers

Because why the fuck not?
Dear Slim,
Hey, how’s it going? I enjoyed your latest work. I actually haven’t been deeply interested in your work until recently, when I heard the rumor that you are on the autism spectrum, and in recovery. That’s rare. I’ve actually been looking everywhere for people who fit this description in my home town. The fact that you’re in your forties is interesting to me as well, since I’ll be there with you in two months. 
Of course I always had a crush on you. What woman my age didn’t? – we all know about the famous blue eyes, and then of course 8 Mile. But there’s been something about the way you put words together that’s always fascinated me. When I found out that my brain is the way it is almost a year ago, I started seeing the patterns of pattern seers. I started noticing who talked in circles – most people – and who told the truth. I started seeing how few of us there were, and how even fewer still had good recovery. 
To be honest, I looked around and just saw me. 
Why am I writing you? I feel like your albums need a reply. Can I say that I understand in a way that you will understand exactly how much I actually do? Let’s pretend you’re Stan (well, because of course you are) and I’m Eminem. I’d get the letter. I’d relate. So let’s just say I got your tape, Marshal, and this is my reply. I hope it isn’t too late. 
You seem okay, but knowing what it’s like to feel locked up in a tower of my own making, the added isolation you seem to get to deal with seems frustrating. Do you have a way to look like someone else, to be invisible (again)? I hope so. I hope you have more freedom then it sounds like you do. 
I get your relationship. I did the same thing with maybe 20 different guys with the same personality as each other, instead of the same person for many years. I don’t know if it is them or not. Do we attract sociopaths, or is everyone a sociopath to an Aspie? Is that just where we fall on the scale? Are we really assholes? I don’t think so. But the couple other aspies I know report that the general population sees them as such. I find them all to be a relief. 
I wish we could just get coffee. The first question: when do you breathe? I never hear you inhale on an album. There has to be a trick to it, or does it just happen somehow? The next question: how’s it going with Donkey Kong? I beat Tetris during a three day depression after my first breakup in 1998. That was it for me and video games. I scared myself by not moving from the same chair for three days. I’ve moved on to other things – other addictions – nearly everything, really, at this point. 
I’m writing this from my car on a freezing night mid meltdown. I was having trouble driving, trouble seeing the road. I’m good though. This happens all the time. I’ll be able to get moving before it gets too cold in here. 
I had this dream about you the morning of the day my boyfriend left me. I was reading tarot cards for us both – they said everything was going to happen swiftly and to stay strong. I don’t know if that meant anything to you, but it was weird to me, because that night my boyfriend left a note and the key, and cleared out his things. Right now he is either using or dead from heroin. His work hasn’t heard from him in three days. That’s all I know. 
But I’m fine. I just keep going to meetings and listen to the assholes who are full of shit, and wonder if my standards for honesty are too high. Why wouldn’t they be? If you’re tricked and bullied your whole life by nearly everyone, maybe that makes for oppositional defiance. I’m not going to do anything for you unless I know exactly why. I’ve had that trick played on me before. 
Do you sing like Ken Keniff From Connecticut when you’re wandering around the house doing dishes or whatever? That’s how I picture it. 
Sometimes I daydream that I meet up with you some crazy way – it would have to be crazy. You know, Revival has that whole wonderfully dirty song about it. Picking up chicks by near vehicular homicide. I guess whatever works. I can just go up and talk to people, and still, I flirt with drawings. 
Well, if for some reason you ever want to hang out, it would be interesting. I’ve never met anyone in recovery who is my age and spectrum. 
And what was with Steven Colbert? Was he actually fucking with you or was that a show. If so, your acting is creepy good. If not, I can understand your facial expressions. I’m constantly wanting to backhand just about everyone lately. 
I’m no one. I’m just an artist and a writer who lives in a tiny apartment near Pike’s Peak. I just think about the possible neurological chemical basis for the Karpman drama triangle all day, and whether or not my chronoseption (good word) is better then the average person’s. I’ve gotten really good at reading facial expressions and lie detecting. I don’t know if that’s a good thing. I think I Maybe was happier when I looked at the ground and didn’t know what people were thinking about me. 
Ah well. Maybe someday I will meet someone with a wonderfully broken brain like me, and we can have adventures involving stupid sober shit at one AM, getting kicked out of places for playing the wrong pianos, and curling up like cats on snow days. Maybe not. I have one of those visual thinking imaginations. I can invent whole Star Wars films and watch them in my mind. I have ways to pass the time. 
But I’m going to be 40 on St Patrick’s Day, 2018, so I know I’m going to die eventually. Miracles happen. If you are ever in the area, and you want to grab a diet soda or whatever, hit me up. 
– Maiden Manitou 

A Dinner with Temple

 

It’s not as cool as it sounds… there were hundreds of us there.

I went to a benefit dinner last night, and Dr Temple Grandin was the key note speaker. It was a very educational experience. Dr. Grandin said most of what I’ve already heard her say on her Ted talks and various speaking engagements. I strongly suggest you check them out, she has a lot of very interesting things to say. The book The Autistic Brain is one of my favorites. What was most educational, to me, was the interaction of the people who were at the dinner itself.

 

First of all, I was worried for a solid couple weeks about what on earth ‘formal attire’ meant. I think I did okay. I went and purchased a few items that looked neurotypical to me, in order to blend in. Rose gold is pretty, and that’s ‘in’ right? So I got myself a couple rose gold items and was sure to wear my least comfortable pair of shoes.

 

I didn’t have to worry, as it turned out. There where a throng of what I imagine as NT people in evening gowns, and a smattering of aspies in tee-shirts and other inappropriate attire. It as fun to scan the crowd and try and find out who my people were.

 

And that rings me to the overreaching concept of what I observed at this dinner. Who are ‘my people’ after all? It was very clear that I had a lot in common with the autistics in the crowd. But there was a lot that didn’t overlap, and the most noticeable thing, to me, was my recovery.

 

I spend many hours every day thinking about spiritual concerns and working hard to see and intercept my character defects.  I can very clearly see now that my autistic traits are not character defects, unless they get to an addictive, obsessive or compulsive level. I’m working every day – for my own survival sake – to bring these patterns to the attention of myself and trusted friends. This is not an ego driven mission. This is how I stay sober, and how I stay out of the thought patterns and situations that might possibly lead to self destruction and even suicide.

 

So, this is what I saw:

 

Dr. Grandin is a lovely lady. I really enjoy her sens of humor. At the beginning of the event, she was very noticeable among the crowd in the front waiting area. She had on one of her famous shirts, and she was being accosted by fans who wanted tot talk to her and take pictures. I felt crowded and overwhelmed in this atmosphere myself, and I don’t honestly see famous people as being more important or interesting then anyone else. So, I went into the hotel lobby and listened to the piano player. He was amazing. He was playing standard and recognizable piano peices with added flourishes throughout. His grand piano sounded amazing, and the original pieces where nearly unrecognizable underneath his additions. It was as if classical music could be manipulated as jazz could, but his playing held the classical sound. It was by far one of the highlights of my evening.

 

I wasn’t really interested in talking to someone who had made something interesting once, when it meant missing out on someone making something interesting in that very moment.

 

I couldn’t figure out where to sit, and had to ask. “I have no idea what I’m doing, but I have this piece of paper.” The ticket sales staff laughed at that. I’m finding humor to be the best way to deal with autistic traits. I also ran into my land lady in line, but it took me twenty minutes to figure out who she was. Yes, it apears I am somewhat face blind. I haven’t figured out wheather I need to make a joke about this at some time in the future. I think I was polite to her, and maybe looked a bit confused.

 

The people at my table talked about food when we were eating food. One couple seemed to be talking abut something intense, so I’m still not sure if they were neurodiverse, but I think they laughed at the same jokes Temple Grandin made. There was a stark difference between who laughed at what jokes. The NTs seemed to applaud any mention of discipline, and the autistics seemed to laugh loudly, separately,  and in many tones at some of the most ridiculous things she said.

 

There was a really decent amount of ableist talk from the introduction. I’d rather not talk about it. My stomach turns a bit to think of it, actually. I don’t like it when people play the victim role with their own children as the perpetrator, regardless of the situation. I’ll leave it at that.

 

After she spoke, there where questions from the audience, and as far as I could tell, they where all asked y autistics. This is when I realized how much recovery has changed me. One woman in her early twenties would not back down from defending the fact that she played six or more hours of video games a day. I could hear the same tense tone in her voice that I hear from newcomers in AA every day. A man asked what to do with his anger, and Dr. Grandin gave the most profound answer of the evening, ‘learn to cry,’ she said. I absolutely love that. There is all kinds of recovery in that simple statement.

 

The diner was uncomfortable, and I was relived when the desert was about to be served. I barely ate any. I was much more interested in leaving, and the possibility of meeting Dr. Grandin, and giving her a little drawing I had made during her speech.

 

I darted into line and declined the offer to purchase a book, not really knowing if it was rude, but a little too poor to care. And there she was, the woman of the evening, looking very far away and confused. Who of us wouldn’t be. It struck me how much the curved line of book buyers reminded me of the cattle ramps she designed. Maybe she should design a place to sit that would calm fans, and she could be away from all these lights, chaos and people. I imagine she spends the week after a talk holed up inside. I most definitely would.

 

I approached her with a sad heart and offered her the paper. “I have a gift for you, I drew this when you were talking.” She didn’t look at me, she looked like she was in the same daze I am in when I’m at my absolute limit and am moving on autopilot, far far away from my body. She has practice, clearly, because she held it together well. She said my drawing was good and asked if I was doing anything with it – practicality and financial self sustaining is definitely one of her special interests, and I have no critique of this. I told her I was a teacher, but I didn’t mention that I was unemployed. She took my drawing and put it in her pocket, and then turned to the next person, “you are a teacher?” Surprisingly, the next woman in line was in fact a teacher. It was as if Dr. Grandin’s associative mind was working in conjunction with the line itself, a sort of magic trick. I escaped. I was getting to reach my limit of human beings and all their information.

 

And that is what keeps me alive now – knowing my limits and walking away from any situation when I need to. I know for a fact, at this moment, I could not do what Dr. Grandin does and stay sober.

 

So maybe one day I will be teaching. Maybe my writing will take off, or someone will actually spend money on my art, but there are more important things.

 

Before I went to this diner, I met an artist who was drawing beautiful pencil drawings in a big notebook. “Do you ever show in any galleries?” I asked.

 

“This is my gallery,” he replied.

 

After it all, I drove up to the north side of town to hang out with some sober friends who were bowling. The bowling ally itself looked like it was underwater, complete with hundreds of fish hanging from the ceiling and murals. It was beautiful, like the piano player. My friends talked and laughed. A guy I know was leaving because his back hurt, and I got to borrow his giant shoes and bowl a few rounds. I got to be Stanley. “It’s your turn Stanley.”  Another friend talked about being a hoarder, and the progress she was making, although slow, getting rid of things. Another friend and I joked about the difference between wanting a lot attention in real life versus attention on the internet. I don’t get it, I don’t want any attention – or do I? I’m writing this. So, I guess I do.

 

We all walked outside and someone joked about how I had told him I didn’t recognize him without his dog, and I told the story of being face blind to my land lady. The night was cold but the company seemed to make it warm again. My friend Edward gave me a side hug, and I teased him about the fact that he always gave side hugs. “I like it!” I assured him, waved goodnight, and drove home.

 

All this time… all this time I have been looking for my people, and here they are. They’ve been here the whole time.

 

And here I am in the cafe typing the next day, my eyes watering with gratitude. I don’t need to look for what I’ve already found.

 

 

Scared 

It’s almost sunrise and I haven’t slept. I didn’t eat much yesterday. My boyfriend left. He left when I wasn’t home and just left a note. He said we needed to talk, but I don’t think that means the same thing to him. To me, needing to talk means quietly talking and coming to an agreement. I guess I’m popular culture, needing to talk is slang for ‘I am going to argue with you and you should be afraid. I don’t know what people in popular culture say if they actually need to talk. 

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I’m terrified. I’m not able to sleep because of sounds. The heat is so loud it vibrates the mattress. I can feel it even if I have ear plugs in. It vibrates my whole body and feels like the house is giving me a panic attack. I feel like not sleeping is just going to make me more crazy, which will make me more annoying, which will make more people not want to be around me, which will make me more crazy, and so on. 

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I’ve recently read about countries where the government will help you commit suicide if you are on the autism spectrum, like me. There are governments that say ‘yes, your condition is terrible enough that we believe it makes sense for you to end your life. 

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That’s not very hopeful.

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I don’t know how to act so people don’t get angry with me. I honestly don’t know what I’m doing wrong. I suspect it’s a little bit of everything, and it boils down to communication problems. No wonder I never spoke when I was little. I gave up. I gave up trying. 

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So I talk or write to get the thoughts out, but is it really communication? If no one cares, or if it somehow is coming out weird or annoying, then I’m shouting into the darkness. 

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I miss my boyfriend. He didn’t always understand me, but sometimes he really did. He had to be trying. He had to be giving me the benefit of the doubt and forgive a lot of mistakes. I guess he just didn’t have the energy. There are other people who are a lot easier to communicate with. I would have to be gold in someone’s eyes for them to keep digging every day. I’ve never had a relationship last more then two years. I’ve had about 20 relationships in 20 years. 

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This pattern is getting so old. 

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It’s getting old enough that I think I may as well not try and have any type of relationship with anyone- including friendship. It would be cool if this problem was only in romantic relationships. No. Autism effects friendships, work relationships, therapeutic relationships, relationships with doctors, family relationships, the people at the coffee shop – everything. 

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So… what do I do?

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Let’s pretend there is in fact a God, a loving God that made me and has a plan. Autism has no cure, so I can’t overcome it. It will always be here, pulling a rug out from under me. I will always have to have super powers in a genius way, or something someone wants to use me for, in order to have anyone in my life. That’s not what I want. I want someone to love me for who I am. It’s very easy for me to love someone for who they are – but I am not easy to love. I’m not the only one saying this. You can find plenty of parents – and those are the most forgiving ones – calling their own children ‘hard to love.’ How can I possibly expect anyone to feel that way about me?

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How can I possibly hope for a basic human life?

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I’d love to be hopeful and optimistic now, but I’m really alone and there is no hope I see of being otherwise any time soon. If I meet a friend tomorrow, I won’t be able to tell if that friend is after something devious. I won’t be able to tell if a friend is a bully. I don’t even know if my… ex? Is he already my ex?… boyfriend is a bully. Or maybe he is sweet and confused and having a hard time. I have no idea at all. And I don’t know what to do in eaither case. 

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So here I am, in the dark, typing with thumbs on my phone (now the fastest way) holding my stuffed octopus. Yes, I can’t even be normal now. 

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So… what do I do? 

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Wait for the sun to rise? Go to meetings tomorrow all crazy feeling? Why? So I can become more confused and annoy new people? 

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I don’t know. I’m very scared tho. I wish I had a full human life, and there were people I could be comforted by, without annoying them. 

Yes, I am disabled 

I recently read a surprisingly polite post by an autism advocate. She said what I’ve been thinking a lot lately, but I’ve been thinking it with a lot more anger behind it. Since receiving my autism diagnosis, I’ve run into a lot of really terribly misleading information, which is entirely frustrating to me. 

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First of all, let me be clear that an autism spectrum diagnosis does not fall between kittens and rainbows and manic pixie dream girl in the DSM. If you only read Rudy Simone and others of her ilk, you might get this impression. Clearly publishers are going to be interested in this angle. What’s a better way to make money off of a stereotype then to create a new one? And I’ll admit, at first glance it’s really appealing. A lot of human rights movements- specifically the gay rights movement – were bolstered by the idea of being able to let your freak flag fly. This works great, until someone who is very solidly homosexual doesn’t really have a freak flag to fly, and they feel ostracized because of it. 

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Some lbgtq people are incredibly normal folk. Some autistics are actually quite boring. That doesn’t make them less autistic. 

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I’ve incountered this attitude among fellow artists and musicians for years, and when I found out about my autism diagnosis I thought ‘ah! This is it. This is why I haven’t ever gotten along with people like me. They are not my people. Autistic women are my people.’ So, I went online and started trying to make friends with autistic women. This was a total failure.

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First I found a group of women who I could relate to because they had trouble leaving their houses. There is definitely a limit I of frustration that I get to where staying in – all the time – forever maybe – seems like a great idea. However, sad for me (and most humans, because we are humans) I tend to get really depressed when I resort to this idea. Then I think it’s a great idea to drink, which no one can see you do through the internet. You can be totally wasted and rant all day online, and no one can tell, right? Well, I did that for years, and then I couldn’t stop. 

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I have this weird idea sometimes that what I experience and learn is being experienced and learned by others, and it isn’t. I don’t think this is a ‘lack of empathy’ as Baron-Cohen (not the Borat one, the one who isn’t funny) would suggest. I think this is a product of the isolation that autistics often face. Anyway, when I got sober a few years ago, I figured it was a trend of sorts – that everyone got it. Of course I was instantly drawn to all the autistic women online who suffer from addiction of one kind or another. And of course (hello Alanon sponsor! [waves!]) I tried to tell them about how awesome twelve step work is, and how my concept of a higher power had changed – thus saving my life. 

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The best way to get kicked out of a group of addicts is to start special interest info dumping recovery 😁.

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So I did. It was slow. There was bitterness and weirdness instead of the official booting. But it was painful. 

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Then there was also the self same autistic author – Rudy Simone – who politely informed me that my comments on her posts were too peachy (I had used the G word) and she was unfriending me because of it. Also, I wasn’t paying the yearly fee to be a part of her online support group. She didn’t state that last bit explicitly. I mostly felt that, for someone who writes about what to do with a bully, she definitely knew a lot about excluding people with that kind of cunning that tends to make me sick to my stomach. 

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That’s when I learned for sure that being autistic doesn’t make you a kind person, and writing self help books doesn’t either. 

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So, my heroes became very human and flawed, and I’ve been depressed about it. There are a lot of angry and opinionated people in autism support groups online, but I’m starting to see that as the nature of the internet itself. 

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Isolation, it seems, isn’t pretty for any of us. 

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So, here is what I have come to. Autistics are not my people. Autistics are people just like everyone else. Yes, I do have an awful lot in common with the ones I’ve met in real life and online, and I am greatful for the ‘community’ of them – because having people to talk to about a shared experience is great. But having a diagnosis doesn’t give you a free pass into my tribe, any more then being in recovery does. There are absolutely terrible people in AA, people who will use their membership as a mask to take advantage of others in the fellowship purposefully. The autism community has these people as well. A place in my tribe has to be earned. I urge anyone who reads this to set the same boundaries.

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All of this is fog, for me. None of it has brought me closer to knowing what autism is for me, and how I can live a full life with it. It has been just as much of a distraction as all the rediculous faux science regarding causes and cures to autism. The book Switched On has left me very uneasy as well. I’ll have to write a full blog on that. I’m pretty convinced John Elder Robinson just had what amounts to a life changing acid trip, but it’s hard to say. With so much quackery out there, any real scientific advance probably won’t be nociced in my lifetime. 

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I had a roommate who worked as a sign interpreter for deaf high schoolers, and did side jobs interpreting for churches, individuals and other organizations in the deaf and deaf blind community. She taught me a lot about deaf culture and disability rights, and, knowing I struggled with some kind of mental issues, I really liked the sound of that community. There didn’t seem (to me) to be a lot of requirements. If you were deaf, you were a part of the community and the movement itself. 

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So, where does this put me with the Neurodiversity movement? I’m not sure. At the moment, I feel a lot more fellowship for the disability community and what they have been working towards for a long time. I honestly don’t think my autism is a cultural difference. I think that reinforces the idea that autism is a social deficit without an underlying neurological cause, and I think science has been past that idea for a while now. 

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And maybe I’m confused about what the neurodiversity movement is, but in my defense, there is a lot out there to confuse me. 

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Tony Attwood says something to the effect that, if you leave a child in a room by themselves, they no longer have Asperger’s Syndrome. I think this idea might be what’s confusing me most about autism. Left alone in a room, I still stim, I still have executive functioning difficulty, I still have sensory issues. If autism is all about eye contact and how I relate to others, I don’t have a disability – it’s everyone else’s problem and they need to accept me for who I am. But that argument ends when I’m alone and struggling. 

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So, call yourself anything you like, but I definitely have a disability. I’m also not interested in getting a cure any time soon. No, no way. Tell me EXACTLY what autism is and what causes it, then we can talk cure. Anything else is just snake oil. 

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Support would be nice. Science knows enough about autism to know how it manifests, so that’s a start. Deaf people have hearing people who can translate spoken language to sign for them. I’d love something like that. I clearly speak a very different language then others. 

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And maybe that’s all my disability is. 

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Thanks for reading 🌟💛🌟

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Rejection, autism and addiction 

Exclusion is an interesting thing. According to some resent reading I’ve been doing, rejection can in fact cause physical pain. The effects of cortisol – a stress hormone – on the body and body tissues are numerous, and mostly harmful. 

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I’m at the Broadmoor Hotel. This is a very prestigious and well known hotel. It has all the stars. As I walk around, I look and wonder at the behavior and expressions of the people here. The staff appear eager to please, and of course they have a general underlying attitude of distain. The guests posture and compete to be the most knowledgeable and rich. “Look at the Indians coming down the hill” one woman exclaims, pointing at a historical painting of Native Americans. Nearly every passerby as I sit here writing is explaining some interesting fact to the person with them. With all this competition, with all this social work, I wonder who wins in the end. If everyone is so busy trying to be better, then who is really in charge in this exchange. The dollar?

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It seems as if the dollar is winning. But it doesn’t seem anyone here – staff or patrons – are happy or at peace. 

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Money is a language that backs up the social agreement of work in a modern society at large. To have a lot of it, is to be socially accepted on a grand scale. To have less of it is to be rejected. 
As a person on the spectrum, I’m finding I have an interesting view of money. Today I was paid less then agreed for a dog walking job. I’m not currently hurting for money, and was excited to be of service to someone who I thought of as a friend. Arriving at the client’s house, after being stuck in traffic for an hour, I found a note saying that she was paying three fourths of the amount we agreed on, because I ‘changed the plan’ by letting her know I could no longer drive across town – that the stress was causing me shutdowns. 

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In America, it is illegal to pay someone less for work for being female, for being of a certain race, for religion or sexual preference. It’s perfectly legal, however, to pay someone less if they have a disability. In some cases, minimum wage laws do not apply to people with disabilities.

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I like to feel that maybe I have some spiritual edge, sometimes. I like to think that years of turning the other cheek when being excluded, years of ignoring insults, years of unemployment, general confusion, and psychological distress have given me at least the advantage of taking a spiritual approach, of being forgiving, and of feeling like I win this game because I can see it happen from the outside, and I don’t play. I’m good at being kind no matter what. I’m good at being invisible. I’m good at fading away, like a ninja or a ghost. 

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But right now I’m hurt and angry. I feel like the only place I might get support is from complete strangers on the internet. I don’t feel at all like I can go to some kind of home base and get loving support from trusted individuals. Why would I trust anyone? If insanity is trying the same thing over and over and expecting different results, trust would be the craziest thing I could feel.

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But here I am, in this life, in this world. Isolation is boring. The internet is boring. Yes – the internet is big, but it’s still smaller then the world. 

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And I want to belong.

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Temple Grandin sounds like a really neat lady. I’d love to meet her, and talk about Star Wars with her, like my friend Michael was able to do. She represents success to a lot of autistics. But from my special interest in religion and philosophy, I’m going to say nearly all the advice there points away from monetary success as the way to happiness. Maybe with a few extra bucks in my pocket I could afford to live in a quiet house. Maybe I’d buy a mansion, and the state would decide to build a super highway right next to it minutes after I signed the deed. Who knows? From a spiritual perspective, my sensitivity to sound still baffles me. 

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I’m an addict and an alcoholic, and today I’ve decided that I forgive, because if I don’t, I’m libel to drink. I’m so kind I have this tendency to try and kill myself for the benefit of others. How’s that for twisted logic and low self esteem? No. Fear. I don’t think I have enough of a real solid sense of self to have low self esteem. I’m just afraid of being here in this world isolated and bored, trapped in my own room and head like it’s a prison, with no real way out – not even the way of words. Not even the way of connection to the people around me. 

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Recently I was rejected by a group of aspie women online, and I see now it was for my own good. Their coping mechanisms veered towards addictive behavior that I’ve already tried, and they were not going to listen to my experiences. There are aspie supremacists among us. Sometimes this manifests as the temptation to complain about neuotypicals – The Other. I find this to be misguided. As another recently diagnosed friend said to me, being an asshole is a condition that can be found equally on and off the spectrum. 

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So where do I fit? 

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Another friend told me recently that she thought it was cool that I didn’t fit into any of the cliques. I don’t think she knew what she was saying. I tried to explain to her that I have been trying and giving up at belonging, as a central theme, for my entire existence on earth. 

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So, what do I do?

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Maybe I give up. Maybe I forget the whole idea of finding a tribe who all know each other, where interaction can occur among them, and I count my blessings for knowing individuals who are scattered across the globe. 

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Maybe I can’t give that up. I want a tribe. A real live one, outside of the matrix. No matter how successful I am at spiritual maters, I remain human. I’d like to have this human experience while I have this body. Pure spiritual experience can wait for when I’m dead. I’m in no rush. 

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Ok, so use aspie super powers then, Bird. Apply some logic and categorize. 

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I can continue to try and gather people on a local level. I can gather aspies and meet with them in person… maybe. Maybe just one at a time. I can keep hanging out with neurotyipicals and hope they take the time out of their busy lives to learn my language. 

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And, I can have faith, and just keep trying to belong and hold onto my spiritual beliefs, and have faith in spiritual solutions. Life is short. We may as well do science to it while we are here. 

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After all, it really is only a game… and no one wins.