A Safe Life

One of the comments I’ve received from friends, since coming out as a transwoman, is that they are concerned for my safety.

That’s a valid concern – trans people face more risk of attack than almost anyone else in our society. A autistic trans person is even more vulnerable, as are trans people of color, poor trans people, and people who are otherwise marginalized in our society, like sex workers.

But let me talk about safety. While presenting as a teenage boy or man, I’ve been kicked, punched, and burned. I’ve been urinated upon. I’ve been raped. I’ve had someone point a gun at me. I’ve had a disgruntled coworker that frightened me enough that I did what I tell everyone not to do – slept with a gun next to my bed. I’ve worried about people coming after me because I turned down their advances.

And most of these people probably thought I was a man. Yes, probably a gender non-conforming man, maybe a gay man, but most probably didn’t see me as a transwoman.

I grew up in a rough town – I didn’t realize how rough it was until I got to college, and the reaction of people I met there was along the lines of, “Well, you can take care of yourself then.” That wasn’t exactly true then – I was an autistic kid just old enough to leave home, without a lot of coping skills for the world. Heck, I went a week without eating because I couldn’t bring myself to ask anyone where the cafeteria was. Take care of myself?

I do know this, though: I survived.

Add to that a physical build and problems that basically mean I can’t make quick movements effectively – I have a ton of willpower and endurance, but that doesn’t help me kick, punch, or block. It doesn’t even help me run away. It would be hard to find someone that couldn’t beat me up, even today.

But I survived. I’m still here.

I grew up in a town where drinking and drugs were the norm, where a man wouldn’t do a “girly” job, where the real men were running oil drills and blasting the side off of hills to get the coal out. Meth was king. We had two suicides by gun at my school, and many others outside of school. My town, for far too many, chewed you up and spit you out. And it’s not like that type of thing stopped when I moved from that town – I’ve lived in slums and trailer courts, trying to figure out if I’ll be able to eat dinner tonight.

I am still here.

I didn’t fit the world – between being autistic and not fitting into the masculine world, there wasn’t a lot I understood or took joy in – but I found some things to somehow keep me alive, and the joys I did experience were precious. I spent decades trying to find ways to find my masculine center, to be in the world as a man, to learn to “be a man” as so many people told me to be growing up.

Well, I am still here. But I am no man.

Yes, I know the risks trans people face, particularly when they are part of other marginalized communities, such as being a disabled trans person. I know how many of us are murdered, attacked, and otherwise harmed by people who can’t deal with someone being their authentic self. And I don’t discount that. While I don’t present as a woman publicly yet (but will be doing so soon), I’ll take some precautions as I do.

But the biggest thing I can do for my safety is to be myself. Even when I present as a man, I face danger because of who I am. But worse than that danger is the larger killer among the transgender community: suicide and, when not suicide, the slower forms of self-hate. When you hate who you have to be, it’s hard to find reasons to carry on. Somehow, I did, and I pray that anyone else in my situation can find whatever small, seemingly dumb reason they can to stay alive, because just by being alive, you help me and I help you. Even if I didn’t kill myself, living a life where you can never be yourself is…well, even if your still breathing, it lacks the vibrancy life should have. It can turn into simply a slower way of killing yourself, when you lack the concern about your health and life. Maybe you don’t grab a gun or a knife or a bottle of pills, but maybe instead you simply ignore your health problems, take risks you shouldn’t, and put yourself in places where the end may come a bit sooner. None of that is safe, yet too often when we talk about safety for trans people we forget that being a closeted trans person isn’t really any safer – indeed may be a hell of a lot less safe – than the risk of being in the world.

Interestingly, I’m finding strength I never knew I had. I care about this body now, I care about my life, I care about being around. Not just for others, but for myself – because I have hope. For myself. I have dreams. I see the light of the possible. And that means, unlike so much of my life, I will fight for this life. That alone makes it more likely I’ll make it to tomorrow.

For me, I’ll take the risk of my very existence and expression provoking the bigots and assholes to harm. Because if I don’t do that, the bigots and assholes certainly harm me even more, keeping me from living, keeping me away from the vibrancy of life.

I get to be me now and I’ve got to be me. I have years of building scripts and trying to predict others, as an autistic, so I know that many people will think I’m out of my mind and see me with a mix of disgust and sadness. Some others will think it is awesome I’m living my life (you all are precious people!). And some will hate my guts, while a fraction of those will try to harm me – through bullying or through violence. But those same people have kept me from being me for my whole life – they’ve taken decades away from me, where I could have been who I am. That harm is done, it’s not a theoretical risk, it’s a certainty. But, finally, I’m at the point where I’m done living with that harm – and am choosing the path of light, the path where there is hope.

To my friends: Thanks for being concerned about me. I am too, for the first time in my life. I promise I’ll fight to be around – if I am harmed, it won’t be because I didn’t care if I was harmed, unlike so much of my life. I’ve found strength and confidence in who I am, and it’s going to be hard for people to take that away.

Staying in the closet…well, that’s what is really not safe for me. It’s taken so much from me to pretend to be a man. And it’s time that I stopped.

I am no man. I am alive.

I Will Remember

Today is a day of mourning for disabled victims of murder.

I will remember.

I will remember those who lost the battle for existence…
…those who were killed by parents, caregivers, or others
…those who were killed by bullies that pretend to be friends
…those who were killed by taking their own life after years of abuse, harassment, and prejudice.

I will remember.

I will remember those who are still with us…
…who bear the wounds of abuse and prejudice
…who receive little, if any, support
…who were told they are “less-than.”

I will remember.

I will remember for myself…
…that my interests are precious
…that my way of participating is valid
…that my uniqueness is important in the world.

I will remember.

I will not just remember but will be someone…
…who spreads hope
…who takes care of themself
…who loves and be loved.

I will remember.

I will remember not just for…
…those who we have lost
…but for a different world
…and for those we won’t lose.

I will remember.

Mass Murderers Might be Autistic – and Why the term “High Functioning” is Discriminatory

As most people probably know, a few days ago a man murdered 6 people and injured several more.  The murderer may have been autistic.

Before I go any further, I want to note that I recognize the horror of what happened in California and am very sad for what happened to the victims and their families. I do believe the entire autism community is united in this aspect and feels the same way.

One of the first reactions of any community, including the autistic community, when something like this happens is to want to distance themselves from the evil person. Some of this is in the form of, “We are not like that!” That’s valid, and true. Autistic people are less likely than average to commit violent crime (and more likely to be the victims – so we’re not the ones that someone needs to be protected from, we’re the ones that need to be protected from someone else).

But, there’s also a darker response: “He’s not autistic.” I can’t accept this knee-jerk response, as much as I do wish that the murderer is not autistic. Sure, we don’t know for sure that he was autistic, and that’s fine to point out in some limited contexts (but not as a way of saying, “So autistic people are okay”). Whether or not this murderer was autistic, the violence he displayed was something that isn’t part of autism, nor is it part of any number of other things (such as being a man, being a college student, being a gun owner, being a white sort-of-well-off kid). But it certainly isn’t part of his autism. That doesn’t mean he isn’t autistic, though.

We have good and bad people in our community.  Just like there are good and bad men, good and bad college students, good and bad gun owners, good and bad sort-of-well-off people. And I do believe we can and should judge individuals as individuals. And, yes, I recognize that there is typically a power – privilege if you like – differential between men and women, whites and people of color, sort-of-well-off people and poor people. But there’s a huge difference between being a member of a group that has social privilege and being a bad person. I’m not saying that privilege doesn’t exist or people shouldn’t be aware of it, but I am saying that it’s not a moral failing to be a member of such a group!

But, back to the autism, we can (and, in fact, should expect we have) bad people in our community. There’s a lot of myths that autistic people have perpetuated about how we’re beyond deceiving people, honest, trustworthy, kind, and any number of other positive things. But we’re not. I’m not saying we’re dishonest, untrustworthy, unkind, liars, either. We’re neither of these things, neither angels nor devils. We’re like everyone else: we have good things in each of us and also some ugly things in each of us. We’re not beyond jealousy, greed, or malice. We have good people and bad people in our community, and we need to recognize that. It’s a mistake to think a group I am part of is better than another group. It’s a mistake that the murderer in California made, one that fed into his evil acts – he felt he was better than the men and women he murdered. Obviously the rest of us have a different opinion. Autistic (or Aspie) supremacist stuff is bullshit.

But, when the “angel theory of autism” isn’t being used to try to discount the murder’s potential autism, another ugly belief pops up: that the murderer was too functional to be autistic. The logic is, essentially, “He was too high functioning to be anything like most autistics. He could talk normally, he could go to college, he drove a car.” Whether or not this leads to someone saying he wasn’t autistic, the point is the same: if you drive, go to school, and talk, then you’re not like real (phrased as most) autistics.

Two things lead to this: first, people have limited experience with autistic people. They may only know one or two, often children. And the person they know probably doesn’t go to college, drive, and may have obvious communication differences. Of course the person they know might only be 6 (how many 6 year olds go to college or drive?), but none-the-less when someone thinks of autism, they think of what they know. If the person they know is an adult that cannot do these these things, too often it is assumed that others are like this.

The other problem is that people think the world works as follows:

Two arrows, one pointing left, one pointing right. The left arrow says "Low functioning" and has, under it, "More Autistic."  The right arrow says "High Functioning" and under it says "Normal"In other words, there’s a line on which we can place autistic people.  There are middle-functioning people in the middle, still clearly autistic, but in the middle of autistic. There’s a few geniuses like Temple Grandin off to the right, approaching “normal” and definitely “high functioning”, and there is a bunch of people on the left who are more affected and thus “low functioning.”

But that’s all bullshit.

You might be able to draw a line like the above for one very narrowly defined skill. But it has to be really narrow. For instance, we all know there are good and bad car drivers. Some people are just plain better at it than others. But is it even that simple? For instance, someone might be great at driving on-road, but horrible driving a jeep on an off-road trail. Are they a low functioning driver?  Probably not. Or they might be fine driving during the day, but not at night. Or they might be great in a city, but easily fall asleep on a rural highway. Or they might be fine driving a little compact car, but totally lost if they are asked to back up a truck with a 35 foot long camper attached. They might be better at driving fast, but is someone that frequently exceed the speed limit a high functioning or a low functioning driver? Where would you be on the line (assuming you drive)? It probably depends on the situation and environment – I suspect I’d be pretty far to the left, near low functioning, if you put me in the cab of a tractor trailer, since I probably wouldn’t even know how to release the parking brake. But maybe I’m pretty far to the right when it comes to backing up a trailer (I can usually get into a tight spot on the first attempt easily). I’m probably somewhere in the middle for most tasks. So, am I a mid-functioning driver? Would you say the same thing if I said I am a professional tractor-trailer driver who can’t release the brakes (but is, on average, mid-functioning considering other skills)? Probably not – context matters. We probably need several lines, for different skills, like “Winter Driving”, “Trailer Backing”, “Tractor-Trailer Brake Operation”, “Night Driving”, “Rural Awareness Maintenance”, and “Speed Limit Obedience.”

Life is a whole lot more complex than driving a car. If we can’t just give one score on a continuum to a driver, imagine how much more complex life as a whole is!

I’ll use myself as an example. I have no problem driving a car most of the time (I can’t say I’m perfect, but I’m not a “low functioning” driver either). I attended college, even obtaining a degree. And I do talk.

Of course what this misses is that of these things, the only one I’ve done without significant difficulty is driving. For whatever reason, I’m comfortable operating pretty much any vehicle I’ve had a chance to operate, from bicycles to aircraft. I’m not sure why, considering how uncoordinated I am with most other things, but I can manage motor vehicles just fine. But the other stuff is definitely difficult.

Sure, I attended college. And it only took about 16 years for me to get my degree. I received a 4.0 average my first year. My second year saw me on academic probation. What happened? It wasn’t the material – I could and did understand the material. Trying to keep everything together for over a year was too much for me, and I was loosing the ability to handle all the daily activities of life. Sure, I could force myself through it – and did – for a while. But eventually that catches up. I don’t know many non-autistic college students that had grades decline as steeply (I do know several autistic students that have). I ended up dropping out, only returning a decade later when somehow I was willing to try to force myself through the process again. This is hardly “high functioning.”

I could talk about speech, but I won’t now, other than to say I had similar difficulties and still do – it’s why I still own and occasionally use speech generating devices.

But there were the other areas of my life too. I didn’t eat for a week when I started school, because I didn’t know where the cafeteria was. I was getting a 4.0 GPA at the time, but couldn’t find where the food was kept.  After a week, I was barely functional from hunger. Yet I couldn’t do the obvious thing: ask someone. Eventually, I ended up stalking another freshman for a few hours, figuring he’d eventually eat (fortunately, he did eat in the cafeteria). Food was a problem throughout my adult life, until I got married (my wonderful wife cooks for me – something that is a tremendous blessing after you’ve lived years of your life dangerously underweight because you lack the ability to manage this task yourself).

But I was high functioning. I went to college. I drove a car.

That’s the thing with autism (and, in fact, humanity). Having skill in area X doesn’t mean I have skill in area Y, even when it looks like X and Y should be reasonably related.

Sure, we like to be able to categorize people. We think there must be some difference between that kid we say is low functioning and the high-functioning examples of people like Temple Grandin. And certainly there is a difference – the obvious one is 50 years of age. But, beyond that, autism isn’t about being good or bad at any one thing. It’s about having a set of abilities that doesn’t follow the normal neurotypical model, and this goes both ways. I don’t have the research handy, but I know some researchers have found that autistics with low measured IQs, typically part of the group that is considered low functioning, share, with their higher measured IQ autistic peers, an ability to do certain types of intellectual processing that far surpasses that of neurotypicals. Of course neurotypicals far surpass both groups – the “high” and “low” functioning groups on other tasks. It’s not about better or worse, higher or lower, but rather different.

When people think of the California murderer, and think, “But he’s too high functioning to be autistic,” they are closing the doors to life-saving daily living services that some people need. They are deciding that autistic people can’t learn skills A, B, or C. They are ignoring decades of research. They’re also ignoring the tremendous variance between individuals, even when those individuals are all called autistic. We’re different, with vastly different skills. One autistic person might not just be able to drive a car, but could be a successful race car driver, while another would be a tremendous risk to traffic if they got behind the wheel. That doesn’t mean one is more autistic than the other. It means that one is a shit driver, while the other may be great. But still autistic. Yet others may have tremendous talents, but because they can’t do some random unrelated task, it’s assumed they wouldn’t be able to do whatever they are talented at doing. They’re “low functioning” after all. Well, that’s bullshit. Don’t dismiss us as non-autistic because we can do something, don’t assume we have other skills because we can do X, and don’t assume that we can’t do something because we can’t do X.

If you think you can put autistic people on a functioning line, from high to low functioning, you just don’t know autism.

More on the Link between Autism and Violence

I’ve blogged on this in the past, so I won’t go into too many details now. There is a link.

I’ve also recently put up a survey about intimacy that included some questions about abuse. The numbers show how often we face this type of mistreatment (yes, I’m aware of the limitations in my methodology; that said, the results match remarkably well with “real” research) – 80% of autistic respondents indicated that they have been abused.  FOUR OUT OF FIVE.

We die in bad confrontations with police (particularly if we don’t or can’t speak), where we did nothing wrong other than being unable to communicate with police.

Too often, we are murdered by caregivers, parents, and family (you know, the people who are supposed to have our best interests in mind) – but it doesn’t stop there. When it happens, juries and judges say they can understand why we were murdered and give a light (if any) sentence to the murderer. You see, it’s so horrible to raise us, that of course people would murder us. Or something like that. Other times, we’re told that murder of autistic people is a “mercy killing” because nobody would want to be like us. Of course we’re not asked. It would be wrong to try to link being a parent or family member to being a killer.

And there are plenty of us who kill ourselves. My first serious attempt was in 3rd grade. If every day of your life was filled with the abuse from schoolmates (I could say, “neurotypical school mates” but I don’t believe neurotypicals are a slave to neurology when it comes to violence, despite the fact that it was typically neurotypical students doing the abuse).

Like other minorities, when we’re killed, it’s often preceded by torture. Remember Steven Simpson, who was murdered by being doused in oil and set on fire during his own 18th birthday party. They changed the title of this article, but you can still see it in the URL: http://www.dailymail.co.uk/news/article-2166327/Autistic-teenager-Steven-Simpson-dies-burn-injuries-tanning-oil-prank-went-wrong.html – “Dies from burn injuries during a tanning oil prank that went wrong.” Uh, no. Having anti-gay obscenities written on your body and then being doused in oil and then having your genitals set on fire is not a prank. Being doused in oil and set on fire is a torture. This is the very definition of a hate crime. What’s the punishment for lighting someone on fire, leaving the scene without calling emergency services, not trying to put the fire out? What is the punishment for hearing someone scream in total agony? In the first-world country where this happened, the penalty is nothing for most of the accomplices and 3 1/2 years for the worst of the accomplices. Yet, it is reported as a “prank” and this light sentence is handed out. Yes, there’s a link to autism and violence: you will walk free after just a bit more then 3 years in jail if you light us on fire in England (the USA is no better when it comes to sentences handed down). Lest you think that the UK is just light on sentencing, check out this robber, sentenced to 13 life sentences. Now, this robber is obviously a bad man who needs to go to jail, who did incredible harm to his victims. But it should be noted that he didn’t kill anyone.

Yet autistic people are the ones who are need to be prevented from owning guns, who are a risk to society, who are supposedly (without any evidence whatsoever backing this up) likely to kill you. Uh, no.

Nothing About Us Without Our Parents

There are three classes of people when it comes to autism – autistic people themselves, parents and caregivers of autistic people, and “normal” people.

Of course the “normal” people typically get to dictate how things work – after all, they beat out the other two groups by sheer numbers.  Just read a letter that was sent to a parent of an autistic kid.  It starts by saying:

I also live in this neighborhood and have a problem!!! You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in close proximity to a neighborhood like this????

The grandmother’s crime (the autistic boy was with his grandmother) was living in a neighborhood and allowing her grandson to visit.  The letter was signed by “One pissed off mother!!!!!”

Now, we all know that most people aren’t the assholes that this “one pissed off mother” is, and we can even see that in the reporting of the community response to the incident. But just because most people are decent doesn’t undo the damage from the assholes. Every time a mother or father of a kid who makes strange noises, does things strangely, has meltdowns, or just somehow otherwise acts different goes out in public with their kid, this mother or father has to fear how people will react.  They have to ask, “Will I meet an asshole today?”

Heck, even a local police chief may be the asshole, should your kid cry in a restaurant.

Often, parents and caregivers get dirty looks when they go out in public with their kids. Others say, sometimes subtlety, sometimes not-at-all-subtlety, “You’re a bad parent.”  After all, a good parent would have normal kids.  Kids who don’t do things differently, don’t make noises, don’t have meltdowns.  It’s, in a sense, an extension of the refrigerator mother theory of autism – autism is the fault of the parents.  If the parents were good parents, supposedly their kid would be more normal – that’s the persistent message to parents of autistic kids.

So, it’s not surprising that some parents have latched onto nearly every possible theory to explain autism, at least theories that don’t blame them in any part (even passing on genes is seen by some as blaming the parents). The origins of the Autism Society of America are based in this – find the true causes of autism and stop vilifying parents! In a sense, much of the advocacy work was advocacy work on behalf of not the child, but simply that the parent wouldn’t be blamed for the child’s behavior.

Certainly, that work is important, and, too often, it is ignored by autistic self-advocates today. Your parent shouldn’t be blamed for your autism! And, largely thanks to parent advocates, they generally aren’t (although their work clearly isn’t done yet – assholes persist).

But, the voices of parent’s aren’t the voices of the people most impacted by autism. Those voices (and other communication) are those of autistic people. We weren’t even included in the membership or leadership of the early autism organizations (and we lack this in many of the current ones). No, parents spoke for us.  Parents might have been treated like crap by society, but they still had more status than we had. If parents were the second class, we were the third class.

Even today, the idea that we should be the key stakeholders in policy decisions about autism is well beyond simply being controversial. It’s unheard of.  While the disabled community has the mantra, “Nothing about us without us,” the implementation of this mantra is typically, “Nothing about us without our parents.”

We see the impact of this even today. When a parent attempted to kill her autistic daughter recently, the press and public expressed sympathy.  Oh, not sympathy for the victim. No, sympathy for the mother. It’s a lot easier for most adults to put themselves in the shoes of the mother than the autistic child. Paula C Durbin-Westby talks about this in her blog.

Even when murder isn’t involved, it affects us every day. Just as the parent has to worry about the asshole, so does the actual autistic person. Most of us have had horrible childhoods. We know how autistic kids are treated. And it’s even worse than how parents of autistics are treated.

But it doesn’t stop when the child leaves the home (and, yes, the vast majority of autistic people do leave the home). If you think a parent gets a dirty look when a child has a overload in the grocery store, try being an autistic adult having a overload in public. We get the blame. Fully and completely. We may end up arrested or otherwise have freedoms removed from us. We’ll probably be asked to not come back to that area. We’re simply not wanted. At all. People can sometimes understand a kid doing this, but they don’t understand an adult that can’t cope with too much input or stress.

And just try – as an adult with autism – to suggest that autistic people should define laws and rules regarding autistic people. No, we can’t do that. We’re just one of the stake holders – and an optional one like that. We’re used when it’s convenient to someone else’s message. But our voice is not all that important without someone else saying it is. After all, we’re just the people affected by these things, we’re not parents or caregivers (never mind that some of us also are parents or caregivers of autistic people too!).

So while I don’t support the second class treatment that parents of autistic people get, and will do everything I can to support parents in ridding the world of that prejudice, it can’t stop there. I’d like autistic people to at least one day get second class status, not the third class status we have today. I’d like one day for us to get treated just as badly – but not worse – than parents of autistic people.

Even better, I’d like all of us to be treated decently. Parents shouldn’t be scared to go out in public with their child. And autistic adults should have a key say in how autistic people are treated (and, lest I leave out a disclaimer, I’m not saying parents shouldn’t have any say, particularly when it comes to being a voice for their child). We shouldn’t just be an optional voice or an after thought. We should be at the table when you’re first thinking of discussing these things.

Equally, I’d like to see a place where our murderers don’t get more sympathy than we, ourselves, do. But maybe that’s still too much to ask. So I’ll settle for second-class status right now.