Autism as a First Language

One of the amazing things about Twitter is the number of friends I’ve made who speak English as a second language. I’ve come to know a good number of people who speak languages from around the world. The vast majority speak it as well as I do, a testament to how much better language education is outside of the United States. 

One of these is a German/Palestinian woman who I was involved in an interesting discussion on the meaning of a word with. We were discussing the complex nuance of it and how tricky it is to find the exact right term. Let me note how great German words are for that. It was talking with her that I hit on a realization: to a great degree, English is my second language with autism my first.

Before anybody gets offended, let me stress that I am not trying to belittle the challenge of learning a second language and speaking it. Of course that is extremely hard and I have a natural advantage having grown up speaking English. I’ve taken a few language courses and never done well. But there is an undeniable similarity. 

See language itself is a surreal thing. We use sounds and symbols to represent complex ideas that aren’t even the same across the species. It requires a common understanding of the exact connotation of the symbol to appropriately express these ideas. When you get down to it, we all have to translate ideas to symbols. It’s just that most people are much better at it than we are. 

With autism, we’re stuck on the conceptual level. Trying to convey an idea is tricky because we can’t include the information that would come along with it. If I try to express a concept like interest, I could mean everything from serious scholarly study to bile fascination and everything in between. No wonder I often have to struggle and correct myself. 

It’s deeply frustrating for us because we seemingly speak the same language as others and we’re expected to be as rapid at it. Trying to explain how that’s not the case is aggravating since it implies failure on our part. Misspeaking makes us seem like awful people sadly. I have horribly alienated people for that reason. 

So if autism is a language, what is it like. It’s very conceptual and visual I think. It relies on grand ideas rather than the nuances of English. It would be far easier for us to show you what we mean rather than speak it. It’s a language high on colors and sounds but low on words. Is it simplistic? A bit. That expresses itself in how direct we are. We see things very bluntly. 

With all this said, why am I a writer? Well why was Beethoven a composer? I may not be able to fully comprehend words but I feel the need to express my ideas. So it is that I use words to get these ideas out. 

And there is hope. I have many autistic friends. I’ve learned our common experiences mean we speak the same tongue. It’s nice to be understood by one of your tribe. 

Diary of an Autistic Father: Week Seven

Lola is cute.  

 

This is something I know as her father. She’s adorable to me as I watch her little face react to everything. Her expressions, particularly her ever present scowl, slay me. I find her a gift to watch at every moment. 

But what of others? Do they find her cute. This week I took her out a few times and got a hard answer as a result of carefully studying their reactions. The answer based on this sample: Lola is cute. 

Watching her at the dentist particularly proved that. Amanda had work done so I watched her in the waiting room. As people came and went, Lola drew immense attention. Everybody had to ask her name, age, and weight. They cooed over her tiny little face. Even when she got upset, she was still well liked.

The next day the routine was repeated at the outlet mall. At the bookstore she was studied like the books inside. At Hot Topic, the managers all demanded to look at her. At the candy store, she was so popular my inability to move her stroller through the store was overlooked. 

So yes. Lola is very cute. Her popularity makes it official. 

The way others react to Lola has a real impact on me. It’s a wonderful feeling. Something that is connected to me pleases others. And yes, I am proud of her. She’s a beautiful child and I’m glad others see that. There’s so much dark right now so I feel happy I’m countering that. Lola gives people a charge they need. 

The hard truth though is she won’t stay this way forever. Lola is in the miracle phase of life. She’s a truly newborn baby. But that’s a fleeting thing that will end. There will come many times nobody notices her. 

What then of me? How will I view her? Will I be less impressed?

I have a third story. Yesterday I chatted with a clerk at Office Depot. We talked about our children. Mine is new. His are adults. But as I heard him talk, it was with a foaming joy about them. He thought his kids were amazing. Admittedly they sounded like it with one a prosecutor and one an actor. But I got the impression they didn’t have to do anything with their lives. They were his and he was proud. 

I have hope that I’ll be in his position. Lola Faye is mine. I will always be proud of her. 

The Virtue of Self Care

This has been a long few weeks in America and an even longer few in the rest of the world. The constant violence. The political bickering. The sense that hope is hard to find. It has to infect anybody with a trace of empathy. 

It certainly has me. I mentioned in my last post that I had a rather unpleasant meltdown that amounted to a number of causes coming together to bring this to what it became. After writing that, I started to analyze what was putting me in this place. Before long, I hit on a key culprit: the state of political discourse. So I finished a long gestating rant on that and posted it thinking it would help. However I found myself ending it with a comment that was a borderline threat and definite scream about how sick I was of the doomsday talk. I definitely believe it, and indeed the note stays up, but I look at it and I see that it did not in fact help. 

So it is that I come to today’s subject, the need for self care. See, despite this being up on social networks I won’t be on them much in the next few days. I’ll be on every so often to check responses to this or people messaging me but I’m going to try to detox a bit from the negativity. I was going to do it Friday and Saturday but Comic Con hit and that’s a fun thing to participate in. Now, the hiatus will last through Wednesday at least. I don’t know if I can do it but I have to. 

And that’s what self care is: something we have to do for ourselves. The behaviors sound selfish in theory. I’m going to ignore a lot of my friends and it’s sounding like I’m judging them. (I’m not judging them. I just can’t do politics right now.) I’m going to spend a lot of time over the next few days reading comic books. I might try to grab a good alcoholic drink. I’ll definitely work on a writing project only I care about. The least selfish thing I’ll do is a ton of Lola time. Lola is a blast to be with. 

All of these things serve a purpose though and it’s not a small one. Self care behaviors replenish the soul. They give us a few moments to stop and refocus on what we need as a person. They allow us to function in our daily lives. 

That they are often selfish and can be called as such stems from our society’s complex relationship with the self concept. We associate doing things for ourselves with not thinking of others. To stop and take a few hours to have fun is to put the work we could be doing aside. It’s engaging in the behaviors of the lazy. And yes, doing it all the time isn’t self care but self absorbed playtime. 

But we have to destigmatize this need. We have to remove the guilt. And yes, some times we do need to cut others out, even if just for a bit. It’s ok to realize others have an effect on us. A break is a good thing.  

Also, I don’t think it’s a bad thing to briefly turn away from the bigger issues. I work at a very good newspaper. I don’t ignore the important news. I read everything that goes in the paper including the stories people think should get more coverage. (We cover them!) But there are limits to what we can carry as a person. Sometimes we have to take a break. It doesn’t make us less aware. It just means we have to function. 

After we take the time to care for ourselves, we return stronger and clearer headed. We have a better perspective on the world. We are better equipped to be the person who will fight the good fights in life. 

So take time this week to release. Find what satisfies you. Then when you’ve recovered, be the best you you can be. 

Diary of an Autistic Father: Week Six

I had a meltdown this week. 
It wasn’t a small one either. What triggered it was a small thing in retrospect, a barely perceptible noise on my car. What was really going on in my head was much larger. I was feeling frustrated after a series of events and this was just the catalyst. 

I bring this up because in theory these shouldn’t happen. I should be stronger. I’m a dad now. I need to be past this terrible weakness. Also I’m in therapy. Shouldn’t I be cured?

Herein lies the issue we face with the condition. There comes a point where you’re expected to be “past” these things. Trying to explain the impossibility of this to others never works. There’s still the expectation that you’re better.

In truth I have been greatly blessed by my therapy. My therapist has taught me a number of techniques for dealing with anxiety, particularly with Lola. In my day to day life my anxiety is greatly reduced through breathing and visualizations. I am better. 

But things still break through the wall like it or not. Financial stress, which all new fathers face, is going to weigh on me. Unexpected things still startle and anger me. Social stress will always frustrate me. These are built into my condition. 

But there is real truth that I must be stronger for my angel. Lola is doing so well. She’s 9 lbs and chugging formula like a pro. She’s healthy and active. She even got a play gym and is kicking it. My baby girl is amazing to me. 

So, no, I can’t throw these meltdowns in front of her. I have to find another outlet. Part of this requires me admitting I have tremendous rage that I have trouble with. I do struggle with this dark side of myself. I am deeply frustrated with a lot of things I shouldn’t be allowed to be frustrated with. 

Because in the end she will need my help. And that’s reason enough to keep working on this. So I can be the father she needs.

This is a long road. This week I hit a pothole. 

Diary of an Autistic Father Week 5

Lola is official in every sense. She has a birth certificate and a social security number. It’s the dawn of that great paper trail we drown in. Yay for her.

She is also a month old now. Well a month and a week. It’s fascinating to think we’ve made it this far. It’s certainly been a dense month, maybe the longest I can recall. Yet here she is. 

One thing that is becoming clearer at a month is her face. Lola’s face fascinates me as an autistic. Adult faces bother me with their endless micro movements reflecting the powerful brains at work driving them. I have a very hard time looking directly at them for this reason. 

Lola’s is a virtual blank. Her eyes dart but don’t focus. Her expressions are very simple. It’s obvious there is not a tremendous amount of thought occurring in her baby mind. She doesn’t have any reactions beyond the classic animal stimuli that I can read. She is simple in that way. 

As a result I find watching her deeply relaxing. She’s a peaceful stimulus, even when she cries. In those moments she’s expressing feelings I understand, hierarchy of needs feelings. But truly I find her the most peaceful when she sleeps. Her baby face goes slack and soft and she is still. 

Watching Lola sleep reminds me of my need for self care. I’m doing what I can. I watch two movies a week for Comics For Rent. I read. I write. I find my peace where I can. 

She’s a good baby at least. I cherish how much she lets me sleep for now. She’s a bit fussy but I can face it. When she’s happy she’s an angel. 

For the next week I’ll be on vacation. It’ll be interesting to see my opinions after that. Presumably unchanged. 

Why I Care What People Think Of Me

I hate the idea that someone out there hates me. I hate even thinking that al-Qaeda hates me. I think if they got to know me, they wouldn’t hate me.
— Pam Beesly, The Office

I want to preface this with a vow to readers that has been in place since the beginning of this blog and even earlier. I have always sworn to be truthful about myself, even if that means looking bad for it. I don’t think that you can learn anything about my mind or the minds of my peers if barriers are up. With that said, let me act on that vow.

There is a belief in western culture that living your life without regard for the opinions of others is an ideal to be celebrated. One is considered bold and stronger for it. After all, they are free to live without worry that they might offend others. To live without fear of judgement is to truly live as yourself.

I am not that person. I am not that person even remotely. I am someone who lives with a profound insecurity about the reactions I draw from others. When I offend people, I am even more horrified by me than they are. The same thing happens when I anger or hurt them. Barring rare circumstances, I would do anything to make people happy.

This is, I concede, not an appealing trait to admit. It makes me sound weak and like a lapdog. That’s not completely true. I do have principles I stand for. I am forever going to be devoted to the cause of equality for all. I’m particularly active in the disability rights movement, a natural cause due to my own status. These are principles I won’t yield on.

However, I’m saddened to concede just how willing I’ve found myself to try and give ground just to avoid an argument. There are limits of course, but I have heard myself concede points I shouldn’t have conceded. I’ve let myself be a worse person than I believe myself to be in moments like these.

Why? Well it begins with the simple fact that when you’re autistic, you’re trained by society to doubt your brain. Your mental patterns aren’t correct by the outside world’s definition. If the way you act is deemed unsuitable by others, it’s a minimal leap to doubting your own opinions.

Furthermore, I’m a former bullying victim, as I’ve often noted. That experience left me feeling deeply insecure. Avoiding conflict is vital to me. I don’t want to be back in that place which is all too easy to do in modern society. Some thrive on conflict, to be fair. I’m not at one.

All the same, I do find myself in conflicts. Most of these I don’t really care about. If a bunch of people jump in my twitter feed and harass me, I’m going to be upset but it isn’t personal. It’s when I find myself in arguments, usually stemming from misspeaking, with friends or people that I don’t know or respect that I get bothered. After all, these are people whose opinions I value. If they think ill of me, then I feel ashamed.

So what I usually try to do in these cases is try to defuse things. If I truly did misspeak, then it can end fast with an explanation unless I make further errors. But if there truly is a disagreement, that’s when I try to defuse with tactics like being polite. This tactic tends to start by conceding points I do truly agree with. Eventually, I may go a step or two too far, just out of ignorance but usually out of insecurity.

Again, this all goes back to the insecurity that I can’t escape. Admitting I seek approval from the outside world isn’t a good look. I’m supposed to be stronger than that and I’m not. I can’t help this trait either. To those who would argue I need to be stronger, I stress that I’m a product of my life.

And I am working on it. I know my weaknesses and I’m tackling them head on. This is one that I’m slowly learning how to confront. Works like this are how I do so. I’m learning to be stronger in arguments too. I know that my opinions are valid. In time, I think others will see that.

Every weakness I face is one I can fight back on. It just takes work

Diary of an Autistic Father: Week Four

  
To truly understand how your life has changed you have to briefly go back to your old one. 

That was the case Friday, Saturday, and Sunday when Amanda and Lola took a trip to Delight, where Amanda’s dad and stepmother live. I found myself back as a bachelor for two nights. In these moments I was free to come and go as I pleased after and before work. I could eat as I chose. I could sleep my hours. I was given a chance to return to bachelor life. 

So let me stress that it stinks. You are completely alone which makes enjoying the time impossible. Getting to buy your own groceries isn’t much fun when the meals for one stink as they do. The fast food options stink in my neighborhood. Nothing is open after midnight. 

But most importantly they were gone. I’ve lived with Amanda for three years now and I love it. She entertains me! When I lay in bed, I know her presence and fall right asleep. And the new one was far from me. I’d barely known her 3 weeks but I missed her. 

So it was that deep into the night Sunday night I drove to Delight. I didn’t arrive until 315 am but I made it. I hit a bunny but hey, I couldn’t stop on a mountain road in the rain. I did all of this because I missed them. 

I held Lola for a long time when I got there. She looked a bit fatter. Her hair was fuller just a bit. She was well behaved as I held her. She just slept. In time so did I. 

The next day I chatted with Amanda’s family. They’re wonderful people. I held my baby as I did. Lola was putting on quite a show. She’s an attention hog that way. 

I had a brief stop off in my past. I didn’t like it. I’m excited to keep going forward.