This is Autism

Everyone has definitions of autism. Professionals define it, advocacy organizations define it (too often in a way that excludes self-advocates), schools and government define it. And these definitions always miss some really, really important elements – they miss the sensory distinctions. They miss how we process emotions and empathy (or they say we don’t have emotions or empathy). And they miss our culture.

Yes, our culture. And our “alive.”

You want to know what autism is?

It is when I visited another autistic and we both sat on the floor across from each other, typing, flapping, gesturing, and pointing. It was when this other autistic brought some stim toys and blankets, threw the blankets over me and gestured at the toys, knowing after a long trip I probably needed some rest. That’s something most neurotypicals can’t pick up on, but another autistic knew immediately.

It was on another trip, with a different autistic, when I was also on the floor, not communicating with words at all, but still seeing, still listening – and having food just appear in front of me, people knowing that’s what I needed right then.

It’s finding others that think like you do. Not just intellectually, but on that more human, basic level. People who carry no expectation (unless they’ve been taught!) that I need to “look them in the eye.” People who understand why I’m stressed out in a certain environment, why I’m calm under my blankets, why I might not be taking care of my own needs (like eating). Mind you, these other people are other autistics, often who have their own difficulties with similar things – but somehow, when able, they are more then willing to help.

Now this is one type of autism – there are many others. Oh, no, not like you might think of high and low functioning or other bogusness. No, there are autistics I can’t relate to, but for different reasons. You see, one thing people would learn from us is that there are different kinds of autistic people, but not different in the sense of IQ, communication, or any of the things that non-autistic people seem to often notice. No, differences at a much more basic level – maybe that autistic IT professional and the non-speaking autistic with full-time support are closer to each other than two autistic IT professionals are!

I’ve seen autistics open their homes, their wallets, their kitchens, and their hearts for me. These are not the actions of people without empathy or human connection. I’ve traveled the world – literally – and met autistics in other countries. We desire a connection.

This isn’t to say life isn’t challenging for anyone. But, it’s life. Life can be beautiful one day and hell the next. For anyone. Anyone can lose a loved one. Anyone can be hurt or abused. Anyone can fail to achieve a goal. But autism isn’t just failure and pain, anymore than humanity is failure and pain. There’s also the joys, including the joy of connection.

The most significant day in my life was the day I married my – autistic – wife. Two autistics in one house. Sometimes I help her, sometimes she helps me. Sometimes we both somehow get through the day having difficulty together, but at least with someone to share it with. She knows me in ways that only someone who has lived as I have, and thinks as I do, could know. It’s beautiful and wonderful and love. I’ll say this: I’m living. Not just existing. But living. Autism is alive. Autism is love. This is autism.

People Pleasing and Self-Respect

I like people around me to be happy.  And I’m in the middle of a bunch of conflict right now.  And I don’t like it.  As part of trying to explain why I’m reacting certain ways and doing certain things, I’m writing this post.  But I’m writing in a general sense, because I think it might affect others and it consolidates a whole swirl in my head.

Sometimes however, it’s easy to do what people want rather than what I want.  Now, sometimes I do what others want and push aside my wants, and that’s good because I consciously make the choice, “This person is more important to me than my own desire in this area.”  For instance, I might not want to help a friend move, but the friend’s happiness and ability to manage life is more important to me than this particular want.

But it’s not always like that.  Sometimes the want is more important.  In some cases, the want is for time and space to think through things.  In other cases, the want is to not see people hurt by others and, if I have the power to stop it, I should, even if it doesn’t please people.  Of course that’s hard to do and it’s why so many of us (including myself too often) fail at it.  But that doesn’t change that it’s the right thing to do.

There are two reasons I try to please people rather than listening to my inner voice.  First, in my past, there are times when I was unable to defend myself against bullies and abusers.  When the bullies and abusers were unhappy, so was I.  That’s probably a pretty common reaction to abuse – to sort of internalize it and think, “Well, I could have prevented it if I only made sure my abuser was happy.”  Of course that doesn’t work, but it’s a maladaptive pattern that is pretty ingrained in me.  It was an attempt to survive, which is exceptionally rational.  So partially, it’s an survival mechanism that can be triggered.

Second, I may try to please people instead of listening to myself because I am sensitive to other people’s emotions, although not in the same way as a non-autistic might be.  They affect me very deeply and very strongly.  I don’t like being around unhappy people.  It can easily pull me into a spiral, something I’ve learned I need to avoid.  I can’t deal with these emotions when they enter my mind, overwhelming me.  I’ll get swept away.  So to avoid getting to that state, sometimes I’ll just go along with what people want.  I’m okay being happy.  I don’t want anger or sadness or whatever else in my head though.  This isn’t a good way of dealing with things, and I’m learning and growing in other ways.

Now, I debated writing this – someone reading this will know how to manipulate or abuse me right now.  But I’m, despite being wronged in the past by some in my community, still of the opinion that most people are decent people who don’t want to do me wrong (and even that some of the people who wronged me didn’t intend to wrong me, and are good people overall).  Not everyone shares my optimism, but my optimism has kept me alive. So, I’m going to hang onto it. I’m writing this to explain what affects me, knowing it probably affects others.

It’s hard to learn to listen to your voice.  It’s hard to step back and say, “I want person X to like me.  But I need to do what is right.”  It’s so much easier to give in to the coping mechanisms and just do what person X wants me to do. My abusers taught me well. And it’s not like most autistic people have tons of spare friends. I still live with lots of fear, whether that’s going into strange buildings, approaching people, or this. And unlike what may be said by outsiders, this fear has nothing to do with autism. It was taught.  And I learned that lesson well.  As do, I fear, lots of autistic people. Someone who hasn’t felt this fear has no idea.

So, not only do I respond to pressure to act certain ways, but I actively look for, “What can I do to make this person happy?” What I’m not doing is what is good for me.  I’m trying to do what is good for them.

Now, this isn’t the fault of the person who is unhappy or that wants my help.  They don’t know they are doing this most likely.  I’ve got to eventually stop things and say, “Hey, I need a bit to process this, get words around it, and maybe even figure out what my brain is trying to tell me.”  But of course that’s part of the abuse training too – I don’t do that often.  But I’m really proud of myself when I do.

How can people help? I don’t really know. I don’t have good strategies for this. I guess, people who know me and know this about me could realize I have a tendency to do this and give me time to process and think, and not take it as a personal insult if I don’t immediately do what they would like to see me do. What they want may also be what I want. But it might not be, too. And I would ask that you listen to me when I hint that I’m at the end of my rope.  If I even hint at it, it probably means the end of the rope is now five feet above my head and I’m dropping down a 500 foot drop. I don’t ask for help much. But I might occasionally hint at it.  That hint is real, it’s not like someone who might yell and scream over something not quite going their way – and, yes, people do that. But my hinting at a problem gets mistaken for not being a serious need while someone else’s yelling gets taken seriously. That sucks. Loudness or forcefulness is not the same as seriousness.

This is why we aren’t believed in the hospital. We go in and say, “Somethings hurting, but not bad enough for me to want to die.” That gets translated to, “It doesn’t hurt bad.”  Meanwhile someone two doors down is yelling and screaming about a minor injury – so they at least get some treatment. If we were worse off then them, we’d yell louder, too, right? Not quite. (ironically, if I say it does make me want to die, then I’m probably “suicidal” and a threat to myself, and, thus, not actually “really” sick and in need of having a physical problem treated)

It’s also a problem with the way a lot of us grew up, both from informal teaching (like my bullies) and formal teaching (where we’re taught don’t question people, quiet is better than loud, keep your voice level down, don’t make other people’s lives hard).  Autistic people get this type of teaching. A lot. Combine that with the typical responses that autistic people have to problems (tell the autistic how they could make people like them, rather than addressing the bully, for instance) and no wonder we often have problems with this. That’s why I don’t think it’s unique to Joel.

But now, regardless, you know something about me. I’m trying to stand up for myself too, to not be carried around with every wind of desire. My friends will accept that. Even when I disagree over things. They want me to have self-respect.

(and, for reference, no, I’m not directing this at one party or another in the Autreat thing, just in general to how demands for “do something now!” can be very triggering, so please don’t read this that way)

A Rule to Avoid Being a Creep

Autistic people like clear definitions and rules. Some things don’t have good rules.

One thing that doesn’t lend itself to creating fixed rules is any type of relationship – whether a friendship, a romance, a one-night-stand, or whatever other type of relationship. People are messy. We’re complex.

But, it’s pretty simple to not be a creep.

First let me tell you what doesn’t make someone a creep: sexual attraction. Even if that sexual attraction isn’t mutually felt by the object of your attraction.

That said, there are a couple parts of sexual attraction, and it’s sometimes useful to separate them out, as they are felt differently in different people. First, there’s the “WOW! She’s VERY attractive!” type of attraction that isn’t based on a relationship. Typically, acting on this is a bad idea – chances are, if it’s a random person walking down the street, that other person has practically nothing in common with you. She might be gay (and you aren’t a woman). Or want to marry someone who can share her love of sailing (and you hate water). Or might not see you as attractive. Or might have completely different life goals than you. Or might not want the same depth of a relationship as you want (she might want a one-night-stand while you want a marriage, for instance). Or any number of other things that would disqualify you as a potential partner in her eyes.

So, acting on phase one of the attraction generally isn’t going to be successful. Of course movies are sometimes based on phase one attraction working to build relationships. Perhaps that’s why they are entertaining and interesting. But movies aren’t real life. And, yes, I know in real life there are sometimes people for whom phase one attraction was the only reason they met and things have worked out mutually well. That’s fine too, but it’s not the typical circumstance.

Phase two attraction is a bit different – it’s not just based on looks, but rather it’s something that develops as you get to know a person. This doesn’t mean that phase one isn’t there (someone can be both attractive initially and attractive after you get to know them!), but it is in addition. I think a lot of long-term partners would describe this as making their love life better – the combination of phase one and phase two can be very powerful and exciting (far more than phase one alone for many people). Perhaps this is why 1/3 of men seeking prostitutes seem to desire an emotional relationship with the prostitute – they are looking for that phase two combined with feelings of mutuality. The emotional attraction that comes with phase two is not separate from the sexual attraction – it actually creates a powerful sexual attraction. In many people it is even deeper than the phase one sexual attraction.

This phase two attraction is a bit different. As you get to know people – and sometimes this can happen surprisingly quickly – a mutual emotional connection might be formed, which increases the sexual desire of both. I’d encourage people to look more for this than the phase one attraction, while not denying the existence of either.

So, that’s my thoughts on general principles. Back to the rule. We’ve already said that sexual attraction doesn’t make someone a creep.

What makes someone a creep is simple: Creeps don’t care if there is mutual agreement about how to proceed in a relationship. If it doesn’t exist, they think they can create it – and try to do so. It’s an emotional, psychological, and sometimes physical violation.

That’s where you can get in trouble with the phase one sexual attraction. It’s almost certainly not mutually felt. The phase two attraction might develop as you and the other person get to know each other, but there’s probably more chance it won’t. Just randomly acting on “She’s pretty, I want to get her in bed,” is likely to meet with failure after failure. That getting to know her thing – even if it doesn’t make good movies – is important.

And, then, as you get to know someone, you don’t proceed without mutual agreement. Occasionally you might “test the water” and see if the other person wants to go a bit further in the relationship, but, if not, you have one thing to do if you don’t want to be a creep: listen. If she sees you test the water, and then gently lets you down, respect that and enjoy what you have with her – friendship or whatever else. Don’t try to figure out what different tactic you can try. She knows you’re interested, she’ll initiate if she changes her mind (she probably won’t). And, yes, even in western society women can and do test the water too. So listen for that too.

Of course I can see people asking, how do you test the water? I can’t tell you that. Each relationship is different. There is no formula, no matter what the pickup artists out there may tell you. Everyone is different. Just respect her if she says she’s not interested. Don’t try a different tactic, respect her. And if you keep persisting, and thus become a creep, don’t be surprised when she gets a little more forceful in rebuking you. She’s not a bitch, nasty, or whatever else. You were a creep.

If you allow her to think you are happy having a friendship, while really you want her in bed, and you won’t be happy with it remaining a friendship without sex, you’re also being a creep. You don’t have mutual agreement about the relationship. She’s thinking, “Oh, a friend! That’s cool.” You’re thinking, “How much longer do I have to put up with pretending to be a friend before I can get her in bed?” You’re not in agreement. You’re setting her up and trying to deceive her to get what you want.

It’s risky to say what you want. And if what you want is good for you but not good for her, she’ll probably turn her down if you allow her to do so (not allowing this would also be creepy). But part of coming to an agreement on a relationship is to communicate and understand where the relationship is at. For me, I can’t do that the way neurotypicals do. The slight and subtle hints and body language doesn’t work. So I need to try to be honest. But there are few things harder in the world than being honest and vulnerable. So I think autistic relationships – particularly between two autistic people, but also likely between an autistic person and a particularly understanding non-autistic, can look a bit different. Some things might need to be more explicit. A challenge is trying to make those things clear while not destroying the mystery and spontaneity of a relationship. It takes someone who understands.

I wrote this mainly from the perspective of a man looking for a woman, but it applies in all sorts of other relationships too. Two people might agree to have quick sex without an emotional connection – or three people might want to do something sexual together. That might be unusual, but it’s not creepy so long as you mutually agree on where and what the relationship should be. And you can be a creep without even seeking sex but seeking whatever else instead. Forcing a friendship to progress can be creepy just as trying to get the girl in bed can be.

So, don’t be a creep. Respect and mutuality.

What is Romance?

I’ve long seen discussions on autistic forums that seek to find a nice, clear, universal definition of terms like “romantic relationship.” What is the difference between two good friends, maybe who share an intimate understanding and connection, and two people who are in a “romantic relationship?”

Like many things, the answer isn’t simple. We humans are pretty darn messy. We don’t fit nicely into categories. Sure, you might be able to find categories that fit 90% of us 90% of the time, but there will always be the messy, fuzzy edge.

That’s okay.

First, does it matter if your relationship is a romantic one or a friendship? If it doesn’t matter to you, I wouldn’t worry about it. But if you are very concerned about whether or not a relationship is “romantic”, then I suppose it matters.

The only definition I believe is valid is “Do you and the other person involved think it is a romantic relationship?” If so, it is. If not, it isn’t. Simple.

But of course there are always some people who dislike the idea of having to take someone’s word for their own life. We all would love a world where we could see, objectively and without any dispute, whether or not someone is in category A or category B. Sorry, it doesn’t work that way.

Things do get complex because plenty of people do try to give a definition of a romantic relationship. For instance, sex usually comes up as a differentiator between romance and friendship. But that falls on it’s face – not all people who consider themselves romantically involved have sex, whether it is for medical reasons, dislike or lack of interest, or circumstances (long distance, for instance). Nor do all people who have sex feel they are in a romantic relationship – certainly people who have sex forced on them don’t feel that way, nor probably do prostitutes, nor do people who want a casual fling. So sex doesn’t make a romance.

Certainly, sex is intertwined for many people with romance – I know I personally would not want to have sex with someone I’m not in a romantic relationship with. Among other things, and without going into details, the relationship frankly makes sex better . The most important sex organ is the brain, after all. So an intellectual and emotional connection associated with what I call romance is important to me. But sex doesn’t make or break romance, at least not universally.

For me, romance is between me and one other person. Someone else may have different ideas. I think emotions, intimate sharing, trust, and respect are really important to make something a romance. Sure, these things can also exist in friendships. As can other elements, such as a mutual commitment to each other. So what distinguishes close, long-term friends who are committed to each other from a romance? I don’t know. For me, it’s the spark and desire – I’ve had plenty of close friends over the years. But my wife is different. It’s even more intimate and closer. And I’ve made a commitment to her I’ve never made to another person. I’ve had friends where I would drop pretty much anything to help if needed (and they felt the same). But this is different. It’s not just helping. It’s having my identity and hers intertwined in a way that is beyond help, beyond support, beyond wanting the other person to have a good life.

For me, my life and my wife’s life are combined. We don’t live separate lives. We live a life where her well-being, happiness, and success are just as important to me – if not more important – than my own. And she has that same concern for me. Certainly, I’ve wanted friends to have well-being, happiness, and success, but it’s just different.

And that’s part of the problem. Romance isn’t logical. It’s not definable. I can’t tell you in black-and-white terms what makes this relationship I have with my wife completely different than relationships I’ve had with close friends. And certainly I had no idea it could be different until I experienced this relationship. I had no frame of reference. I had never experienced this spark.

But I do believe autistic people can and do feel the spark. Now some people may go through life without ever feeling romantically attracted or attached to someone. Others feel the desire for this from an early age and know that it is out there for them to find. Yet others, like myself, don’t feel the spark or even the desire until they run headlong into it – and then it burns but doesn’t consume within their heart and soul. Not their logical processing unit!

I do think most people – including most autistic people – can feel this spark. Too often, autistics are told we can’t. Too many public examples of autistic people are people who don’t feel the spark, so it’s easy to feel that may be a universal experience. Of course it’s possible to not feel it, not want to feel it, and still live a completely full and wonderful life – I do reject the “My kid will never know what romance feels like” type of garbage I hear some say for both reasons. I reject it because it may not be factually true (we can’t know if someone will or won’t feel it, autistic, neurotypical, or otherwise). And I reject it because I and you have no right to push our hearts’ desires onto a kid who may or may not want or need those desires to be happy.

I would suggest to that hypothetical autistic kid, if he were my kid, or if he asked me for advice, the following: if you don’t feel the need for romance in your life, that’s fine – no point in trying to change that or to feel defective. It’s a perfectly wonderful way of living! As Song of Solomon says, “do not awaken or arouse love until it so desires.” But, at the same time, just because you don’t feel it today doesn’t mean it won’t impact you powerfully tomorrow – so don’t close yourself off to the possibility either. If it happens, let it happen. If it doesn’t happen, let it be. Don’t force it and don’t prevent it.

Marriage Equality for Autistic Folk

Today, the US Supreme Court is deciding on whether or not gays have a right to get married. I’m embarrassed that this isn’t self-evident to a country that claims to be based on the idea that there are fundamental freedoms that all people have intrinsically, just for being human. Of course this is hardly the first time that we’ve had problems understanding that.

Of course gays aren’t the only people that have trouble with society and society’s views on marriage.

Autistics are typically viewed by people as uninterested in others (so no need to worry about marriage or dating), non-sexual beings. Heck, there are several sexual orientations in many people’s eyes – straight, gay, bi, disabled. Of course some more progressive people realize physically disabled people (or, rather, some physically disabled people) might be gay, straight, or bi. But mentally disabled people…well, that’s just sick to think of sex.

And of course people can’t think of marriage without thinking of sex.

I have news for people: autistic people like sex! Sure, some of us don’t want to have sex with anyone (just like some non-autistic people don’t want to have sex). But plenty of us do want to have sex. Our sexual desires are no different than any other group. We have people into strange stuff and “normal” stuff and no stuff. Go figure.

I have other news, though: it’s not just sex. I love having intimate physical times with my wife (don’t worry, I’m not going to go TMI) – but that’s a special case for me. I never really desired that with anyone else. You see, the emotional connection I have for my wife brings a level of enjoyment and excitement to the bedroom that nobody else could bring. I suspect plenty of non-autistic people would say the same thing – that there is a component to intimacy that isn’t about physical sex.

Autistic people desire connections with others, too. We don’t want to be lonely (we may want to be alone sometimes, but that’s different from being lonely). Being lonely sucks. Before I met my wife, I still had a need to be with people – I had (and have) deep friendships with people that understand and know me. These friendships aren’t romantic or intimate, like my relationship with my wife, but they are deep and contain a form of love. These relationships give meaning to my life.

Too often, it’s assumed that we don’t want that. We do. We might not want what looks like a typical relationship or friendship, but that doesn’t mean we don’t want a relationship or friendship at all.

This is true not just for those of us adults who can tell you about it. It’s true from the beginning of my memories. I remember before I spoke how I connected and desired the presence of certain people, how I wanted a connection to humanity. That spark isn’t missing from us! Even if we don’t always go the right way about it.

But in addition to being seen as people who aren’t sexual, don’t want/need a relationship, and don’t seek connections with others, there are other problems. We have problems with money and transportation. We have barriers when it comes to group homes and institutions (I’ll note that many of which are run by religious organizations who can legally prohibit same-sex relationships – and nobody, including every single autistic advocacy organization I know of, seems to care). Competency and our own desires are questioned. We have a lot of problems.

Then there is just the practical. How does someone different find someone else in the world? It’s not easy. It’s a wonderful thing when an autistic person finds someone who connects to their soul and heart – but it happens far too infrequently. It’s a huge issue in the lives of many autistic adults, yet very, very few of us had any real education on relationships other than “don’t touch people inappropriately” (or, sadly, “don’t touch people sexually at all”). This one huge area of determining happiness is completely ignored.

It’s funny – social skills are a huge concern to people when they see us and educate us. But what they mean by social skills typically aren’t the same things that we might desire. For instance, what’s the first social skill example used on a sample IEP site? It’s simple “will raise their hand and wait to be called on before talking aloud in group settings 4/5 opportunities to do so.” Sure, this might be important (or not – I don’t know what the last time I raised my hand for permission to speak, but it was quite some time ago), but it is more about meeting other people’s needs than meeting my own.

We need to get past the “don’t touch girls” type of social training. And certainly we need to get past the “don’t make the staff’s job hard” type of training. We need to recognize the desire people have for connections. Yes, I realize everyone is different and that not everyone wants a spouse. That’s fine. But nobody wants to be lonely.