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Mar. 23rd, 2014

Who is "Neurotypical"?

"Neurodiverse" and "Neurotypical" are words we had to invent because there were no words for "People who have brains that work in a way that's close enough to average to be called average by the general observer," and, "People whose brains are demonstrably not average." You can't say "cognitively disabled", because some atypical conditions like synesthesia and giftedness aren't disabilities. You can't say "abnormal", because that implies disease and is rather pejorative anyhow. Thus we use the word "Neurodiverse" to cover a huge range of atypical brains, starting with autism but covering everything from intellectual disability, post-stroke, TBI, and developmental brain issues, to savant syndrome, synesthesia, and giftedness.

"Neurotypical" is not just a word for people who are not autistic. It's a word for people who fall roughly in the (statistical)  normal range for cognitive functioning and neurology. It started in the autism community, but it's a word that is useful for other groups, too.

If you want to say, "People with ADHD are not (usually) on the autism spectrum", you may say, "People with ADHD are (usually) non-autistic."
"Not autistic" covers neurotypicals, as well as people with atypical brains who do not have autism; we didn't need to make a new word to cover people who weren't autistic, because we already had an easy way of saying that. But to talk about people whose brains weren't remarkably unusual, without using the term "normal" (the connotations of "normal" and "abnormal" carry too much baggage to be used as neutral terms), we needed a new word. So we use "Neurotypical."

We're not the only group that does this. For example: Cisgender (opposite of transgender); heterosexual (opposite of homosexual); able-bodied (opposite of physically disabled); sighted (opposite of blind); hearing (opposite of deaf/Deaf); people of color (opposite of white); indigenous (a group of people who already lived in a place when another group invaded or settled there). Some words are adapted from words that already exist. Some words are invented. They're often ways to talk about things without using the term "normal", because "normal" implies quite a lot of things that we don't mean when we talk about the majority as opposed to the minority.

Because the human brain is so unique and so different from person to person, even "neurotypical" is a rather broad range. Neurotypicals may become artists, surgeons, politicians, or soldiers; their brains are flexible and can train to deal with all of those things. They have widely varying personalities, from the introverted bookworm to the charismatic cult leader, the impulsive adrenaline-addicted extreme athlete and the careful, detail-oriented archeologist. So we can't say they're all the same (that would be silly, nonsensical, and more than a little offensive)--but they all think in a way that's close enough to average that they fit into the way the world works without having to make major adjustments. They are also valuable as communicators and connections for the neurodiverse, because their cognitive flexibility and social talents allow them to--if they desire to do so--communicate with people who are very different from themselves. This allows the neurodiverse to contribute to their societies, when neurotypicals accept and include them, and strengthens the whole society as a result.
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Mar. 19th, 2014

"Overcoming Autism" is not on my To Do list

I am autistic, and my autism is not separate from my identity. "Autistic" is part of what defines me, just like "college student" and "American" and "short". If it's okay for me to say that being female is part of who I am, then why can't I say that about autism? Or is it because disability is something that's so terrible that we need to reject it and pretend it doesn't exist?

Obviously, I'm not some kind of walking blob of autism, because autism doesn't come in blobs; it comes with people.

One of the most patronizing and pitying things people think about disabled people is that our one and only goal in life should be to become non-disabled, or to hide our disabilities as much as possible, or to make up for the disability by doing something amazing and justifying our existence. We can't just live our lives; we can't have goals and dreams completely unrelated to our disabilities. In fact, we can't have "real" lives at all as long as we remain disabled.

It's as though we're written down, like stories in a book, and the only possible happy ending is to become non-disabled or somehow approximate being non-disabled. And you know what? Those stories aren't the ones we write. They're written for us. They're pushed on us, expected of us.

I say we have the right to write our own stories. In my story, I am autistic, and I am fine with that. I want to become the person I know I can be, the person I am meant to be. I determine what my identity is, and I determine what my goals are, and spending my life becoming some kind of neurotic faux-neurotypical is not among them.

Mar. 11th, 2014

What's been going on with me lately

I feel like I have to talk about personal stuff today. If you're here for autism-related rants, I guess this qualifies, but it's much more personal and less theoretical.

So... let's see. You probably know I am a college student and that I'm an incredibly nerdy person who loves learning just about anything. Recently I went to a social psychology class whose professor happened to be my academic advisor. I'd never gotten to know him before, but this time I met with him a few times to discuss the subject, and he even gave me some interesting journal articles and let me summarize them instead of doing the boring book chapter summaries that the others in the class had to do. Anyway, last time I met with him, I learned that I had maybe five or six classes left until I graduated, finally, with a bachelor's degree in psychology. He says that I am likely to do well in graduate school.

So this sounds like good news, which is because it is good news, but it made the following events feel even worse. In January, I ran out of financial aid, and I thought I was going to have to drop out of school, but they hired me at the disability services department technology center--a student job, and what I earn can go straight to my school bill. I've always had trouble working, but this is different because the job itself is within my area of interest (disability accommodation and technology), and my supervisor is willing to tailor the job to my abilities. I took to the job right away and by all accounts was performing quite well. I was even becoming a particularly useful worker because I understand math and science and speak German, which is necessary if, for example, you're going to turn a statistics book into a format which can be read by text-to-speech software.

Enter the villain, WSU financial aid bureaucracy, stage left. I had been unable to make the first payment for winter semester and had accepted that I was going to end up paying a late fee. But that's not what happened. My first paycheck came too late to pay the first payment, and instead of a late fee, I found myself completely kicked out of school, dropped from registration. And because I was no longer a student, I could no longer have a student job.

The upshot is that I'm now once again unemployed, unenrolled, and living on disability payments, which are enough for rent but not enough for utilities. (I am not in danger of having said utilities shut off because that's illegal in winter, and I'm on food stamps, so I won't go hungry. No immediate danger here. But it is frustrating and frightening nevertheless.)

(I may be unemployed, but I'm not unoccupied. The technology center still lets me work on a volunteer basis, which is what I'm doing now. They need me--they have a shortage of math/science-savvy students. I'm working on a discrete math textbook right now, which is cool because it's a subject I've never had, so I am actually learning discrete math for free. And as always I am turning out blankets for the women's center blanket project. So you needn't worry that I am getting depressed and feeling useless; it's not that bad.)

Well, here's the plan... I just have to hold on until May. In May, I'll be able to register again. And I'll be able to work again. Well, for pay, anyhow. I'll be able to slowly pay off my utilities. I'll be able to get my degree.

BTW, if you guys are wondering, here's how the job thing works: I have what they call a PASS plan, which is an exemption that lets people who are on disability put aside money that they can use only for education or job training that will eventually get them off disability--never for personal needs, just for school or work. It's not very well known, but if it's available in your area, look into it; it might be your ticket off welfare. But naturally, it's no good if you can't work.

My greatest fear right now is that I won't be able to stay in my apartment. My lease lasts until April, so I can't really move without losing money I haven't got, and if I move I'll be too far away from school to make it feasible to get to class, because I'd either have to walk for two hours, or use the bus system regularly, which would cause overload and eventually shutdown (I know this because I've tried the bus thing before, and it doesn't work... at one point I was banging my head against the bus window, and I'm not even much of  a head-banger).  Losing my apartment would mean losing my chance at schooling, probably for good.

So yeah, that's what's been going on. I'm scared. On the other hand, I've gotten through a lot of crap in my life. I survived abuse and bullying, got myself out of a cult, survived a summer without a home (but not without a couch to sleep on), recovered from depression multiple times, and adopted two wonderful cats. I have friends who have literally told me I can sleep on their couch if I need to.

I'm always aware of just how close I have come to ending up on my own memorial. I recently added Mark Wood, a man who starved to death after his benefits were cut. He had Asperger's. When they found his body, they discovered a stack of unopened mail, just like what tends to pile up in my own mailbox when my executive functioning starts to slip. He didn't have help; I do. Without the people who are helping me, I'd be in the exact same situation he was in. Maybe I might survive it, since I've got stored body fat, a willingness to scrounge, and no particular tendency toward eating disorders. But that's just luck, isn't it? I've been hungry before. Not recently, but it's happened.

People keep helping me. I'm a cat who lands on her feet. Maybe that's part of why the memorial is so important to me--because I feel like it's just luck that I'm not in the same situations that many of those people found themselves in; that because I'm at risk, too, I can understand how important it is that they are remembered, how important it is that we keep such things from happening.

Mar. 6th, 2014

It's OK to be an Indoor Cat

It is my belief that when we domesticated cats, we actually accentuated their tendency to hunt small animals. After all, their primary function was to keep mice and rats out of food stores--they probably enabled our early civilizations to exist and saved many human lives by protecting the food from vermin. We would have preferred cats who were good hunters, who would hunt even when they were well-fed (and thus strong and healthy and even more effective at hunting), and this is the trait that we see in our domestic cats today. When we keep them as pets and they no longer need to hunt, we need to provide them hunting-style play to keep them engaged and occupied, or they will very likely get into trouble, stalking our feet or climbing our curtains!

Cats which live indoors, like mine do, can only hunt the small insects and occasional mouse that makes its way indoors, so they need toys and a human willing to play with them. And I certainly don't mind! If anything, playing with my cats is one of the high points of being a cat owner. It's a lot better than letting them out and worrying that a car (or a drunk frat boy) will result in an early death. Certainly their natural environment is outdoor and semi-outdoor environments like barns and warehouses, but they can live indoors just like humans can--our natural environment is outdoors, as hunter-gatherers, and we're fine sitting in offices. They may be adapted to the outdoors, but they're not adapted to the way we've changed the outdoors--they're not adapted to poisons, cars, and sadistic cat-haters. So the best place for a cat, if you're not in a peaceful, cat-loving neighborhood with little traffic, is probably indoors with a lot of toys, a window seat, and a human to play with.
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Feb. 27th, 2014

Avonte

Avonte Oquendo's Manner, Cause of Death Undetermined.

It will be tough for his family, not knowing how he died. We can only hope it was quick.

I hope they investigate why Avonte left his school, rather than just researching ways to make autistic children stay where we last put them. People do things for a reason. When you are non-verbal, your behavior is how you communicate. Sometimes when people leave school, they are saying, "There's something interesting I want to see." Or, "I want to go home." Or, "This classroom is stressing me out; I need a break."

In a few, critically important situations, non-verbal children who leave school or home are saying, "They are hurting me. I am afraid. I am in pain. I need help." Autistic children are more vulnerable to abuse than typical children, and sometimes the only way they have of telling us that something is wrong is by leaving the place where the wrong thing is happening.

There has been a lot of talk about tracking bracelets and supervision and "Avonte's Law" and how to make autistic people stay put. These things can be useful, but it still makes me worry. If a child leaves a supervised environment, yes, that's a problem. But the solution to that problem is never as simple as "Make the child stay." Quite a few of the autistic people whose murders I have researched tried to leave the place where they were killed, or were restrained so that they couldn't. A few negligence deaths have resulted from someone being restrained and not being able to leave when the building caught fire.

Of course the majority of children who leave home or school are not being abused there. Still, they may well be uncomfortable, bored, or even in pain. If we just keep them there and call it done, we haven't solved the problem. The risk of continued abuse is only the most serious factor; even if you were absolutely sure that your child's teachers would never hurt them, wouldn't it still be prudent to check whether the fluorescent lights are painful, or whether the seat work is boringly simple, or whether another child is annoying them? Even a child who's simply homesick still needs reassurance.

Avonte's death is a tragedy, and we do absolutely need to protect kids from getting into situations where there's danger they don't understand. But never, never at the price of keeping them from telling us what is bothering them and how we can help. "Wandering" deaths are a reality for autistics--so are abuse-related murders, institutional mistreatment, and being shut up instead of listened to when it's critical that someone hears us. There are many factors to be balanced here, and there are no simple solutions.

Sleep disorders & autism

Sleep disorders seem to be common for autistics. Insomnia, funky sleep-wake cycles, completely unpredictable sleep cycles, extreme night-owlishness... you name it, we've got it.

I've never had insomnia more than briefly (thankfully!), but I do have an unpredictable sleep cycle and my depression tends to have a seasonal component--it's worst when I haven't been getting sunlight. I also have sleep paralysis episodes a couple of times a week. Sleep paralysis happens because your body paralyzes your skeletal muscles while you're dreaming to stop you from acting out your dreams. Wake up too quickly, and they may still be paralyzed. Most people seem to be quite unnerved by sleep paralysis.

Is it odd that I don't find my sleep paralysis episodes to be frightening at all? I've had them since I was a teen, and from the beginning I just thought, "Hmm... my body is still asleep." And it takes a while to figure out how to move. That's all. It never frightened me because I never experienced it as "Oh, noes, I can't move!"; it's more like, "Welp, looks like I'm not quite awake yet. Might as well lie here for a while." Sometimes I can open my eyes; sometimes not. It never lasts more than a few minutes, and it just feels like my body is too heavy to move and it doesn't make sense to bother trying. Or maybe like gravity got about ten times stronger. I dunno. It's not a particularly weird sensation; it's probably what your body feels like while you're asleep, if you were awake to feel it.

I also get sensations from my physical body that filter into my dreams. If I'm not deeply asleep, I will feel tired within the dream. That's because I'm getting messages from my body, which of course is asleep.

And I've had lucid dreams since before I can remember--those are just dreams where you know you're dreaming. I've gotten rather proficient at controlling the dreams. I can go where I like, do what I like. I'm practically always capable of things like telekinesis and flight. The trouble with lucid dreams, though, is that of course your brain is producing the dream--so things only exist when you pay enough attention to them and imagine them in enough detail, and hold them in your mind with enough constancy. When you're asleep, your logic isn't working very well, and you tend to lose focus easily; it's like ADHD and off your meds, only more so. Still, I can say, "Tonight when I go to sleep I'll fly to the Sun," and about half the time I'll be able to do it that night. The other half of the time, I'll manage it within the week. Lucid dreams aren't a sleep disorder, but they're an indication that I tend to be hyper-alert, even during sleep. My brain can manufacture quite a lot of detail, including things that you're not "supposed" to be able to do while you're dreaming, like reading text and experiencing taste, touch, sound, and (a dulled version of) pain.

My sleep cycle is pretty unpredictable, too. Sometimes I sleep for six hours, sometimes for twelve. Sometimes I'm tired at 3 p.m., sometimes not until 5 a.m. It's just the way things are for me. I do take melatonin (a hormone) to regulate my sleep cycle; it's a relatively safe dietary supplement that is worth trying, provided it doesn't interact with anything else you're taking. It doesn't work for everyone, but it's been proven effective for jet lag.

The thing with autism and sleep is probably just that we think differently, and because sleep is a function of the brain, primarily, we also sleep differently. But I don't think trying to turn your sleep cycle into a NT one is a particularly good approach--how do we know that our autistic brains have the same sleep needs as a neurotypical's? For example, I can be completely well-rested, but after an hour's intense socializing, I'll need a nap. And a nap is a great way to solve shutdowns and overloads of all sorts. Most NTs wouldn't need a nap because they'd been talking to their counselor for an hour!

Maybe the best thing to do is know how your body works, and how your brain works, and let it do its thing. Trying to keep your sleep cycle constant is probably a useful, considering how routine-dependent we tend to be, but sometimes you've just got to say, "Yep, Brain, you're awfully weird, but I like you anyway."
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Feb. 23rd, 2014

Prejudice Spillover

I have lately been doing some historical research on the Holocaust. I wanted to find some profiles of people who had died in Hitler's involuntary euthanasia program, which targeted primarily children, and primarily the disabled and mentally ill. My best estimate, taking into account the prevalence of autism and the number of dead, was that over three thousand of these victims must have been autistic. But I could not find a single profile that suggested that an autistic person had died in Aktion T4.

This did not, however, lead me to conclude that autistic people were not targeted, or had somehow not existed back then even though people who were children at the time, and survived to today, are still being diagnosed, long-overdue, with autism that has been missed or misdiagnosed all these years. I still believe autistic people were killed in Aktion T4, just as people with other disabilities were, because the lack of profiles--diagnosis, personalities, even home city--extends not just to the autistic people, but to all disabled people. There are very few records that go beyond names and ages--and the records that exist, the people who were remembered, were often the victims who were neither disabled nor mentally ill. For the disabled and mentally ill, all that remains is usually a small card filled out by a doctor with a name, a few dry biographical details, and a death sentence. When there are long stories about who the person was, what they were like, they are often stories about political dissidents, religious or ethnic minorities, or non-Germans whose existence had become inconvenient.

In a situation where the primary victim group was disabled or mentally ill, the victims who are remembered are the ones who were caught up in the carnage, who did not belong to the target group, who were instead too outspoken against Hitler, or too inconvenient, or thought to be disabled and weren't, or were part of another group that Hitler also wanted to be rid of. About half the cases I read about were non-disabled people. And yet we know that most of the deaths were of people who were indeed disabled--mental asylum inmates, people with obvious physical disabilities, and people with disorders like epilepsy and cerebral palsy.

This isn't a phenomenon that's unique to the Holocaust or to disabled victims. I found the same tendency when the killings of gay men in the Holocaust were discussed, to point out that many were not gay. There are the stories of people who were institutionalized in horrendous "asylums" and were not insane or intellectually disabled. Howard Dully's lobotomy is discussed as though it were particularly horrendous because at the time he was a normal boy with family trouble.

We react to these situations with particular horror not because they were any more horrible than what happened to the intended victims of such abuse; we react to them this way because they make us feel unsafe.

If Hitler is going after the Jews and you are not a Jew, then the situation doesn't threaten you. You're safe. You can sit comfortably back and say, "How horrible," but in the end you are still sitting comfortably and it's someone else who is at risk of being crammed into a cattle car. We feel much more threatened when we hear that someone has been accused of being a Jew, even though he's not, and been rounded up with the rest. We feel somehow as though it were a greater injustice.

Some autistic people try to escape prejudice against the disabled by insisting that they are not disabled, or by hiding their disabilities. These are survival strategies. Even as very young children we know that our disabilities make us vulnerable.

I have some stories of this sort of spillover prejudice on the autism memorial. Rylan Rochester was killed by his mother because she thought he was autistic, even though he was a healthy six-month-old baby. Daniel Pelka's abusive stepfather tried to justify his ultimately fatal abuse by claiming that Daniel was autistic. In both cases there is no evidence that either child was even disabled, much less autistic. But they are dead, nevertheless, as dead as the most obviously autistic person on that list, and they are victims of anti-autistic prejudice just as they would be if they had been autistic.

Spillover prejudice makes us feel unsafe. In our cave-man brains, we want to be sure that atrocities meant for minority groups will not hurt us. We want things to be predictable. So when they are not, we feel outrage. And yet, shouldn't we feel just as disturbed when the victim actually is part of the targeted minority?

Jan. 30th, 2014

Normal Illnesses Only Beyond This Point

If I say, "I'm not feeling well," and it's disability-related, I feel like I'm lying. Somewhere along the way, I got convinced that only "normal" illness is real.

I'm not allowed to say "I'm not feeling well" if I'm overloaded from socializing all day, because most people would feel fine. I'm not allowed to say "I'm not feeling well" because it's cold and the cold makes me tired, or because it's hot and I can't stand the feeling of being sweaty. "I'm not feeling well" is inappropriate to describe the overload caused by unexpected things, and the way the world seems distant and incomprehensible and I just want to find a corner and curl up in it.

"I'm not feeling well" is for having the flu or food poisoning or strep throat, or something else normal. Maybe if you stretch it, it's for migraine headaches and out-of-whack blood sugar. But it's not for autistic overload. Never. Because autistic overload isn't real. You should just work through it, push yourself harder, keep going. I'm not breaking out in spots, I don't have a temperature, I don't need a doctor, I'm not having seizures. Therefore it can't be real.

I stayed home from work today because I'm stressed out. I work at the technology center now, putting together books for people who need them in audio format. Scan, edit, text-to-speech. I was supposed to be there for three hours today. Yesterday I went to bed at 11 p.m. to be up on time for my 9:30 class... I couldn't get out of bed. I couldn't figure out how to move. I finally dragged myself out at 11 a.m. after twelve hours of sleep, and it took me two hours to get myself showered and dressed and get the cats their food and their clean litter box. I kept getting stuck in the middle of doing things. I missed two classes. And I called in to work. It took me a while to figure out how to call in to work. I had to call disability services and get transferred because it seemed too complex to figure out where I had written down my boss's phone number. She was really nice about it. I just said, "I'm not feeling well." It was the truth. And I feel like I lied.

After a while, if you get stressed enough and you're autistic, it starts to get harder and harder to figure out what to do next, even how to move. You can't do things that take a lot of thinking. It doesn't matter if they're fun things or not. When I'm kind of stuck like that, I can't play computer games because it takes too much thinking--I'd just stare at the screen and kill my character repeatedly. Crochet means I have to round up my supplies. It's a little easier. I'm kind of surprised that I managed to type this post, honestly, but typing is pretty much automatic. Thankfully.

Why are you only allowed to be sick if it's the kind of sick that other people understand? I remember being a teenager, and my grandmother wouldn't believe me when I said I was having my period and couldn't come over to her house. (I love my grandmother. I wanted to go. But it's hard to go somewhere when you can't get out of your bed.) She didn't believe me because she'd never had bad periods herself. She thought that my parents were making excuses to keep me from coming to see her.

One of the most frustrating parts of having to live in a world with ablist prejudice in it, is that you start to pick up that prejudice and use it against yourself. When I say I'm not feeling well because I'm autistic and my brain has ground to a halt, there's this part of me that's just saying, "You need to work harder. You're being lazy. You're taking advantage of these good people. Come on, this is easy. Stop being so lazy. You're just pretending. This isn't real. You aren't really tired. You just want a day off to bum around. You had enough sleep last night, so you can't be tired. You're just lazy. If you were a good person, you would have gotten out of bed and gotten ready in half an hour and been at school and done everything you were supposed to do, but you're not a good person. You're taking advantage of the kindness of others because you just want to be lazy."

That's what the world tells me and that's what I tell myself. Every time I slow down, every time I don't do something that a NT in my place could do, every time I pass up an opportunity to help someone or do something useful, because I know I would just get tired and let people down... every time that happens, I think, "I'm so lazy." Yesterday I saw a little black stray cat on campus. I know we need a campus cats program, to neuter and monitor the strays so that they don't become a nuisance and can live happy and healthy lives instead of dying young and having litter after litter of doomed feral kittens. And I also know that I can't start one, because I don't have the time. So every time I do something relaxing, something I want to do, I feel guilty because I should be out there helping the stray cats, or at work, or making another afghan, even though arguably, "slacking off" is the only way I manage to stay sane enough to do anything useful at all. Any time I relax, it comes back. Lazy, lazy, lazy. Constantly.

I wonder how many other people with disabilities, especially invisible ones, struggle with this. How do you know when you're being truly lazy and how do you know when you're being wise enough to say you can't do any more? You can't use the NT standards because they don't apply to you. If you're NT, you know you need to rest if you have the flu or if you have been working hard all day. But having been in an office full of people, or having to wait unexpectedly long at the pharmacy, or having to deal with the feeling of a polyester scarf, isn't something that even comes into the picture. It's a minor annoyance; it shouldn't shut you down. If it does, you're a whiny, lazy coward who's looking for an excuse. Except... if you're autistic, maybe it's a legitimate thing to say "I'm not feeling well" when the polyester scarf and people and unexpected events are making it hard for you to collect your wits well enough to take care of yourself. Maybe it's not really lazy to climb back into bed and huddle under your weighted blanket. But try telling that to your feelings, which have grown up under the dominion of the idea that there's only one right way to live, only one definition of "I'm not feeling well" that matters.

Dec. 15th, 2013

The power of helping

One of the manifestations of ablist prejudice is that disabled people are seen as unable to help others, always the ones receiving help. They don't acknowledge our skills and abilities as being something that someone else would need. But, in fact, we are perfectly capable of offering help to others, whether other disabled people or non-disabled people.

One of the more intriguing aspects of volunteering, if you are disabled, is the change in perspective. You are the one offering help. I worked at a local food pantry for some time, and I remember how people's voices changed when they talked to volunteers. They bent their bodies down and forward, as though bowing to us. They spoke softly and pitched their voices up just a little, as though pleading. They were sending these submission signals. Not everyone did this, but it was common among those who were newly unemployed, or had recently lost a source of income, who were ashamed at having to ask for help. It seemed obvious that they had been taught for a long time that if you asked for help, you were socially inferior. The ironic part was that at the time I was a volunteer at the food pantry, I had also been a client for several months.

Sometimes when people thanked me so profusely, often asking what they could do, I would answer them literally, replying, "Well, we can always use volunteers," and explaining that they could arrange volunteer hours by calling our phone line. It was a way of saying that my own position was something that was open to them too; that they were powerful enough to help simply for having two hands and the will to do so. And it's not just an encouraging lie; it's true. A society works best when people both help and are helped. It's the low-income people who know this best, because we know what it is like to need help, and we understand that others who need help may not get it if we don't step in to do something.

One of the most empowering things you can do is to help someone else. And one of the best ways to do it is to help that person become more powerful themselves. If you are disabled, you are in a unique position to know just how it feels to be powerless, and just how stigmatized people are for seeking help. To give help yourself, and then to make it very clear that you are giving help as a neighbor helping a neighbor and not as a potential overlord, you are shattering many ideas that have probably been thrown at you for a long time.

Dec. 12th, 2013

Is Autism Making you Miserable?

My attitude toward having autism is, in general, "I don't really mind being autistic." That is, it's part of me, part of my normal life, part of my outlook and experiences. Autism can be frustrating, annoying, painful, enjoyable, or interesting--much like life in general.

This often sets me at odds with people who see their own autism as a curse or a tragedy. They are unhappy, and they attribute their unhappiness to having autism. The only way to become happier, they believe, is to somehow no longer be autistic. If they believe a cure is possible, they may be spending their time trying different mainstream or alternative methods to erase their autism. If they don't think it's possible, they may take the attitude that their life cannot be worthwhile until someone invents a cure to give them normalcy.

In social psychology class we studied happiness--what makes people happy, and why they may not be happy. Interestingly, your life circumstances affect your happiness much less than you might think. For example, once you have enough money to live on, it's not whether you're rich that determines your satisfaction with your economic status--it's whether you perceive yourself as well off relative to those around you. People consistently overestimate how unhappy they would be if something bad happened to them. In the realm of disability, both laypeople and professionals significantly underestimate the quality of life that disabled people report having.

So is it really your autism making you miserable--or are there other things in your life that are causing stress, unhappiness, pain, or impairment? I've seen a lot of people blame things on autism that are probably due to other things in their lives. The problem with doing this, is that autism is a stable, life-long condition. If you blame something on autism when it's due to some other, changeable circumstance, you could be overlooking things that can be changed.

Here are some of the possibilities...

1. Social anxiety disorder/social phobia; avoidant personality disorder.
Makes sense that autistics are more prone to these disorders, which have in common a fear of rejection, a fear of social interaction, and a general tendency to expect mistreatment and ostracism.
These traits are traits of social anxiety disorder or avoidant personality disorder--they are not autistic traits:

  • Being anxious in social situations; being anxious when you think about social situations.

  • Avoiding social situations by being alone even when you want to be with others, or by withdrawing mentally or physically (to the edge of a room, for example).

  • Fearing rejection, ridicule, and criticism.

  • Worrying about other people judging you.

  • Physical symptoms of fear while in social situations.

  • Interpreting others' neutral communication as negative, signs of criticism or rejection.

Social anxiety disorder and related issues can be treated. You don't have to live in fear. Yes, autism certainly predisposes us to these disorders, because we have probably experienced real rejection--but social anxiety disorder is not a part of autism.

2. The effects of stigma, discrimination, and prejudice.
Let's differentiate these: Stigma is the labels society puts on you for belonging to a group. Prejudice is when people have an unwarranted negative belief about a group you belong to; discrimination is when they act on it. As autistic people, we are often exposed to prejudice against disabled people. Many of the things people attribute to being autistic are actually things that happen to people who are a part of stigmatized minorities. For example, these are not a result of autism, but a result of prejudice:

  • Being refused or being fired from a job; being passed over for opportunities at school; facing discriminatory housing practices.

  • Being mistreated, for example, domestic abuse or bullying; receiving little or no assistance when you ask for protection from such incidents; being blamed for instigating the violence against you

  • Fearing attack--physically or socially.

  • Being distracted by the knowledge that people think autistic people are less competent. This distraction can lead to poorer performance on tasks that are thought to be hard for autistic people (but awareness of the phenomenon can help cancel it out). For more information, research "stereotype threat"

  • Internalizing ideas about autistic people as being worth less than NTs, being less competent, being tragic or broken, etc. Even if you know these ideas are illogical, hearing them over and over can convince you to believe them emotionally--and your emotions don't easily listen to reason.

  • Feeling defensive; expecting people to dislike or reject you

  • Being "in the closet"--deciding to pretend to be neurotypical to avoid the effects of prejudice

  • Rejecting the idea that you are autistic; or, redefining your autism as "not a disability", in order to disassociate yourself with the prejudice relating to autism or to disability

  • Keeping to "your own kind"--feeling unable to, or unworthy of, interacting with neurotypicals; avoiding prejudice by sticking to interacting only with people who are in your own group

  • Looking down on people you perceive as being "more autistic" than yourself

The solution here is to fight against prejudice--first in your own mind, and then in your immediate society. Notice that some effects of prejudice don't just happen because other people are biased against you, but because you are biased against yourself. Prejudice as a social problem is being successfully addressed by many groups, from blacks to gays to women. Disabled people have their own civil rights movement, too. In order to fight prejudice, you have to constantly check your own beliefs, and the beliefs of others, against logic. Many of us will find that we have been bombarded with prejudice so often that we have internalized it--but spend time getting to know the people you feel are different from yourself, and you will become more comfortable. Learn to appreciate differences instead of fearing them. People who declare you inferior are wrong: Dare to question their assumptions.

3. Physical illness.
Have you ever read one of those testimonials from someone who says they were autistic and things were terrible and then they went on this special diet and suddenly they're neurotypical? There's no scientific proof that special diets work, but every once in a while, somebody really improves when they change their lifestyle. Why?

Do you think and learn better when you are healthy, or when you are sick? What about when you're well-rested, versus tired? Would a nutritional deficiency hurt your ability to think? All of these factors affect your cognition--not just autism. And, because we're autistic, we're often more sensitive to our environments, both our internal physical states and the sensory input around us--meaning that for an autistic person, a simple headache or indigestion can be a one-way ticket to shutdown.

These signs of physical illness are often blamed on autism and can make it harder to cope with autism:

  • Poor digestion, food allergies, or nutritional deficiencies related to a diet that does not match your nutritional needs. Ironically, this includes malnutrition related to various special diets that are supposed to cure your autism.

  • Lack of concentration, moodiness, and impaired cognition caused by sleep problems.

  • Poorly controlled epilepsy, leading to seizures (obvious or subtle) which disrupt your thinking.

  • Untreated pain, which you may not be able to communicate to others, or may not be able to detect, or which may go untreated because you do not react to it as a neurotypical would, or because your reaction is blamed on your autism

  • Lowered cognitive ability related to stress from an illness.

Treating physical illness may not cure your autism, but it will improve your general physical health and increase the amount of energy you have to deal with being an autistic person in a non-autistic world. A well-managed chronic illness is much less of an impediment.

4. PTSD; after-effects of abuse, neglect, institutional maltreatment, or bullying
Some of the problems we blame on autism are not due to autism at all, but due to the experiences we've had in life. One of the disorders easiest to mistake for autism is the withdrawn version of reactive attachment disorder--a disorder that comes from chronic early neglect or abuse that keeps a child from forming secure bonds to caregivers. It's no wonder that the effects of mistreatment can be mistaken for autistic traits. For example:

  • The belief that you have no future--a PTSD trait that may express itself as the idea that your disability means you have no future

  • Being easily startled and unusually sensitive (can be an autistic trait; can also be related to hypervigilance)

  • Poor relationships with others; inability to trust others

  • Anger; irritability--can be mistaken for meltdowns

  • A desire for revenge against abusers

  • Ignoring your own needs in favor of others' desires

  • Running away from home or "wandering" away from an abusive situation

  • Social isolation

  • Low self-esteem; the belief that you are worthless and deserve to be mistreated

  • Mistrust of doctors and medical personnel; inability to benefit from psychological treatment because of previous mistreatment

Recovering from the effects of abuse may be difficult, but possible--and you're probably a lot stronger than you know. Sometimes, especially if you're autistic, you don't even understand that the people who hurt you were wrong to do it--and, in the case of institutional abuse, sometimes the rest of the world doesn't understand how wrong it was and how much you were hurt. Identifying the abuse as wrong is an important first step. People react to abuse in different ways; some are very resilient and not very badly affected, while others will deal with the fallout for a lifetime. The important thing to remember is that being autistic does not make the abuse justified--it just made you an easier target.

5. Depression
Unlike psychotic disorders, depression doesn't usually make you lose your ability to think rationally. What it does is much more insidious: It slightly skews, slants, colors your impressions of the world. You still see the same world as everyone else, but you see it in a more negative way. You lose the ability to hope for good things. You see problems as unsolvable and bad situations as inescapable. Physically, you have less energy (or an excess of uncontrollable nervous energy); you sleep poorly or too much; you feel slowed and tired. Depression is extremely common--it's the most common mental illness in the world--and autistic people experience it even more often than neurotypicals do, perhaps because our lives contain more stressors. If you are depressed and autistic, you may blame these traits on autism:

  • The belief that your autism means your life is a dead end

  • Seeing yourself as incapable, incompetent, and trapped

  • Seeing yourself as a burden to others

  • Seeing yourself as worth less than others because of your disability

  • Poor concentration, scattered thoughts, disorganization

  • Sleep disturbances

  • Being short-tempered and irritable; exploding at the slightest provocation

  • Being easily tired and constantly exhausted (for example, less able to tolerate sensory or social overload)

  • Social withdrawal

  • Attributing failures to your own character or ability, rather than to circumstances

  • Being unable to see solutions to the problems you face; for example, believing that prejudice is permanent and unchangeable, or that autistics will always be rejected

Depression is a treatable mental illness. It's also episodic--that is, it comes and goes. It doesn't last forever; things get better. The trouble is, if you're autistic and depressed, that you are particularly likely to assume that the symptoms of depression are symptoms of autism--that your negative perception of the world is a correct perception of the hopeless life of an autistic person, rather than the result of depression coloring your perspective. Once you know what depression is and how it changes the way you think, though, it becomes a little harder to fall victim to those deceptions.

6. Buying into traditional ideas of success.
How often have you heard someone mourn over an autistic person's "will nevers"? He'll never graduate from high school, or never marry, or never live on his own, or never have a job, or never be popular... Well, I'm never going to become a professional skydiver, work as a lumberjack, or join the military; I'm incapable of doing those things. And yet I don't mourn that loss. Why? Simply because I don't value those things. I don't base my idea of a fulfilling life on them. But some people do. Symptoms of this problem include:

  • Desiring something because you seem to be expected to desire it; for example, wanting to be part of the popular crowd because that's considered superior, even though you don't have common interests with those people

  • Having standards for success that include living a traditional life--for example, marrying and having a well-paid job

  • Gauging your success by how well you match the stereotype of a successful person, rather than asking yourself whether you have fulfilled your own goals for your life

  • Creating goals for your life based on what you "should do", rather than what you want to do; or, not even knowing what you want

  • Wanting to date or have a significant other not because you want to connect with someone, but because you see it as a status symbol or a sign that you are socially successful

  • Feeling ashamed of yourself when you do something in an atypical or non-traditional way

Autistics can be traditionalists. We do like to have nice concrete definitions for things, black-and-white categories and sets of instructions. So when we set out to do something useful with our lives, sometimes we don't ask ourselves what, exactly, that means--we just go with the majority opinion. We assume that because other people want something, we must want it too. We assume that because something is supposed to make others happy, we can't be happy without it.

So when we claim we're unhappy because of autism, is autism really what's making us miserable, or is it something else--something that can be changed? We live in a world where people assume that if you're disabled, your primary function is to sit around and wait for a magical cure that makes your life suddenly meaningful. But people with disabilities know that life is meaningful, intrinsically, with or without a disability. Don't buy into the idea that if you're autistic, anything negative in your life must be due to autism and is thus unchangeable. That's bunk. Take action. Take care of yourself. Don't buy into the ablist beliefs your culture tries to push onto you. Live your own life; find happiness on your own terms.

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