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Oct. 19th, 2014

This Cool Thing My Cat Did

So today I'm walking down a hallway, shoes on and intent to getting to the door because, darn it, if I don't go shopping today I'll have to go a sixth day without a shower curtain. And Tiny, all twelve pounds of inquisitive nannyish boy-cat, comes down the hallway the other way. It's a narrow hallway because the apartment's small and there's a vacuum cleaner on one side of it, so we can't pass by each other comfortably.

Tiny looks at me, looks at my big clunky shoes (which he hates me wearing, since they make me clumsy and noisy), and stops right where he is. He's saying, "Uhh... you first," and thinking "Bzzzzt! Clumsy human sighted! Collision avoidance system activated!"

I look at Tiny and I automatically move to the side of the hallway, pressing myself against the wall. Tiny sees this, his tail goes up, and he marches through the provided gap. He's acknowledging that I've given him the right of way, and he's saying, "Thanks, have a good day!"

I've seen this happen so many times with humans in narrow spaces, but I didn't realize cats did it, too. It shouldn't surprise me that Tiny gets the idea of sharing a narrow hallway, since he's so good at figuring out everything else I do. In fact, I'm pretty sure he gets it better than me--there have been many times when I've run into things, tangled up foot traffic, and generally caused confusion because I couldn't insert myself properly into the rhythm of people walking and sharing a sidewalk. But Tiny gets it.

My cat is awesome.

Oct. 9th, 2014

So she sent the cops after me...

Today at around two in the afternoon I was sleeping peacefully in bed, as my wonky circadian rhythm demanded. My alarm radio was going off and had been for about a half hour. I heard a knock at the door. It was the police, doing a welfare check. Apparently, my mother had called them and demanded that they check on me and get me to call her.

The officer himself was decent about it, and I was well-rested and my communication was pretty good--no nightmarish police encounter here, thank God. I was asked what my diagnosis was (autism and depression), whether I had enough food (yes) and how I would get more (walking to the store), how I was paying my bills (automatically), whether I felt like killing myself (no) or hurting myself (also no). He walked through the apartment, saw the moderate mess and got glared at by Tiny, gave me the number for the counseling service that diagnosed me to begin with, asked me to call my mother, and left.

Interestingly, when he advised me to get assistance and told me it was okay to do so, he used the same metaphor I've used myself for years and, as far as I can tell, came up with myself: "A man whose car breaks down goes and gets help to get the car fixed. A disabled person who needs help with living independently gets help for that, too."

It's not a complex metaphor to compare disability assistance to societal interdependence such as what lets a person call a mechanic to fix a car. It's one of those ideas that gets invented multiple times by multiple people, all over the place, and then spreads until everyone knows it and no one knows who thought of it first.

It's not the first time this has happened. Other things I've thought of have spread like that, subtly, until I've heard them from someone else as advice or information or interesting ideas they were explaining to me. Many of them are probably ideas that are engendered by the social conditions we live in--ideas that are made accessible and so easy to originate that anyone who is looking out for them can put them together.

That's the beauty of the Internet, of modern technology that lets us exchange ideas so easily. An idea is made accessible by society, and nearly simultaneously it sparks in a dozen people's minds. They think it's interesting and they share it, and from there it spreads, to combine with other ideas later on. It makes me wonder whether the effect I'm having on the world is bigger than I think because of this fractal pattern of combining and spreading ideas; and simultaneously, I wonder whether if I weren't spreading those ideas, they would spread anyway simply because the world is ready for them.

Well, I sent my mom an e-mail. I have the number for the counseling service. I still don't know how I'm going to get out of this mess, but I do know that I am not moving near my mom, let alone move in with her, because one of my priorities is to stay independent, no matter how much help I need, and my mom is one of those people who thinks that if a person's disabled, someone else should run their life for them because they know what's best for them. I tend to disagree.

So, Mom--I know you're probably reading this--I am a grown woman, I make my own decisions, and that's the way it's going to stay. Yes, I woke you up at 3 a.m.; yes, I had hours-long tantrums; yes, you had problems getting me in and out of the shower; yes, I'm strong-willed and difficult and all of that. But I happen to like being strong-willed and difficult, thank you very much. I am my own person, not a good little cripple who's going to look adoringly up at anyone who oh-so-charitably deigns to give them a few coppers, and if you try to take my right to decide for myself what my life is going to be like, I will have one of those famous temper tantrums, and you do NOT want to be at ground zero.

As for getting help, I have a list of steps I'm going to try:
Go to the disability services office and ask for help getting in touch with the counseling service.
Talk to my case worker at the vocational rehab services bureau, whose e-mail has been sitting in my in box for two weeks.
Call the pharmacy and get them to call my doctor for a refill on prescriptions. Hopefully the doctor says yes.
Gather up the mail I haven't opened or answered, and either dig through it myself or ask for help doing it.

How long it's going to take me to organize doing those things, I haven't a clue, but at least they're better than having no idea where to go next.

Oct. 1st, 2014

Adult regression

I'm not coping nearly as well as I used to in the past.

I recently dropped my classes, so I'm not in school anymore, but that's just the tip of the iceberg. I haven't been able to get anywhere or do much of anything useful.

I used to be able to go shopping when I needed to, and it was difficult but I managed it. Now, I'm putting it off and putting it off until there's nothing in the house to eat. I used to be able to clean the house... now it's getting steadily dirtier and dirtier. I thought I'd mastered keeping myself clean--ditto; I'm lucky if I take a shower every other day. Getting to appointments is slowly getting impossible. Today I had a doctor's appointment I didn't go to, but I'm proud of myself for knowing I wouldn't be able to do it on my own and texting a friend for help. Unfortunately I didn't give him enough notice, so it didn't work, but the way I am now, it was actually an accomplishment. Now I have the additional problem of knowing I'm running out of prescribed medication and not knowing when I'll be able to get more.

Usually when this happens, it's because I'm getting depressed again, but this seems to be the other way round--I'm getting depressed because I'm worried that I won't be able to stay independent. It's not the independence I care about so much (it's okay if people have to do some things for me); it's the right to make decisions for myself. I worry that my mom will step in and take over as my "caretaker"/jailer. I know that my rent is too high to sustain on a disability check, and I worry about how I'm going to handle finding a different place and moving there, because right now I absolutely can't fathom how I would get to know the ins and outs of a new neighborhood. I want to do something useful with my life, but doors are closing in my face. I'm in debt and overdrawn at the bank and I don't even know how bad it is because I haven't checked my balance lately. I can't find the help I need unless I somehow muster up the executive functioning, initiative, and social skills that are the very same reasons I need help in the first place.

I've tried to find an aide, but I can't seem to navigate the system well enough, and whenever people help me, half the time I don't keep my appointments with them. My sleep cycle is so out of whack I never know when I'm going to be tired or when I'm going to wake up. I worry I'll lose access to the internet, which right now is basically my only social outlet, and if I lost that I'd be totally isolated. Even the autism memorial project is getting stalled. I have maybe fifteen or twenty names that I need to be researching, and I keep putting that off, too, even though I care deeply. I'm having more and more episodes of not being able to find words, too, though that doesn't scare me so much because it's happened a lot already.

When an initially independent adult with a disability becomes more disabled, especially when it's not easy to predict (autism is supposed to be pretty stable throughout the lifetime), they're immediately in a bind-- in order to get the help they need, they need the skills they're losing access to. I don't know why this is happening to me--it's been happening, slowly, for years; it's just recently that I'm passing the threshold of truly not being able to live on my own anymore. I do know that my priorities are to stay alive, to keep my cats, to keep my right to decide for myself, and to keep a way to communicate with the rest of the world.

Sep. 27th, 2014


Someone at Wrong Planet recently posed the question, "What is love?" Here's my answer.

Love is having among your top priorities the well-being and happiness of another living creature. It means that their happiness brings you satisfaction and that you act in ways that benefit them, and that even when you don't feel emotionally connected, you still persist in making decisions with their interests in mind.

I've thought about it some, and I think that by this definition it is actually possible to love people who never do anything but annoy you--or people you have never even met.

There are other words that can be used to describe related things--words like "passion", the dizzy-headed emotional and erotic connection to a new partner; "fondness", the warm feeling that one has for someone they feel comfortable with and consider a friend; or "duty" (to family, friends, or community), the decision to work to benefit someone else even when doing so brings you no satisfaction. There's the parent-child bond that includes a lot of protectiveness and a good deal of identifying the child as very nearly part of oneself, which is heavily rooted in the instinct to care for one's young.

But love, in general, is more than an emotion--if it were only an emotion, then all you'd have to do to stop loving someone is to get upset with them. Love is more of a long-term behavioral pattern, a conscious or subconscious decision, or a habit--perhaps even a way of life.

Sep. 16th, 2014

What could an autism rights movement give us that we don't have now?

What could an autism rights movement give us that we don't have now?

Jobs. We're unemployed at a rate that's high even for people with disabilities, and many of the unemployed are perfectly capable of working. Many of the ones who are working, do so at sheltered workshops often earning less than a dollar an hour.

Equal protection from harm. We're several times more likely to become crime victims, and among the people who victimize us the most are the caretakers and family members who are supposed to protect us. We are the victims of sexual abuse, rape, and murder at much higher rates than non-disabled people. Many types of abuse are even seen as legitimate precisely because they are done to disabled people--for example, chemical and physical restraints, abusive therapy, lack of privacy, etc.

Self-determination. Anytime we are involved with professionals, whether doctors, therapists, or support staff, there is a huge power difference. They decide for us even though we can decide for ourselves; any decision we make for ourselves is one they have let us make. They have credibility; we don't. They are the heroic helpers; we are the manipulative patients. We have no one to turn to when we are declared "a danger to self or others".

Equality under the law--in reality, not just in theory. We are still disproportionately the victims of police beatings and police shootings. When someone kills an autistic person, their sentence is likely to be much lighter than if they had killed a non-autistic person. When an autistic person makes a complaint, they are less likely to be listened to. When an autistic child is bullied, the perpetrators are rarely punished, and the autistic child is often blamed instead.

Access to appropriate education. Many autistic children are sequestered in special education programs where they are taught to look as normal as possible, while their talents are left untrained. Others cannot access normal public schools, but seem "too normal" to get the help they need. Most universities are not autistic-friendly, even though many autistic people can and want to study for a university degree.

Access to services that we need to live. Whether it's a young child whose parents can't get a speech therapist, a young adult who can't get help paying the bills, or a barely-independent person whose social security check can't be stretched to cover the rent, many autistic people simply are not getting the basics of life--housing, food, and medical care, and the things we need to have to be able to access them. Autistic people still live way below the poverty line in many cases. Many are homeless.

Equality in society. We are still perceived as burdensome changelings, empty shells who are not quite human. People still think of "autistic people" as a category separate from "people". They think we are an epidemic, a crisis, a tragedy. They do not see us as neighbors, friends, and members of their communities. They want to create a world in which we do not exist. We are still treated like dirt simply for being different.

So, yes, we need the autism rights movement.

Jul. 29th, 2014

Q&A: Informing an Undiagnosed Adult Friend

Q: Would it be a good idea to inform an adult friend that he most probably has Aspergers/HFA? He is very intelligent, has a well-paid responsible job [that he can do from home totally on his own, usually], has verbal but not behavioural meltdowns; his friendships are odd and shallow and his love-life alternately a mess or non-existent.

A: Short answer? Yes. If it's bad enough for you to worry about it, it's probably a good idea to tell him what you've observed. The worst that happens is he gets offended and you apologize; at best, you might have given him a clue that'll help him change his life for the better.

Long answer: The profile for adult autism is pretty complicated. When someone's slipped under the radar for half a lifetime, they often develop coping skills, hide autistic traits, and generally cobble together a way to cope. What they end up with is something that seems vaguely autistic to someone in the know, but could be any number of other things too.

The traits you mentioned aren't really core features of autism. Shallow friendships, stormy love life, verbal meltdowns, intelligence... they're rather vague traits. Shallow friendships aren't actually associated with autism at all, because we tend to be introverts, which means we tend to have a very small number of very close friends, if we have any at all. But there are extroverted autistics, about a quarter of us, and depending on the person, extroversion plus autism can equal someone who thinks of everyone they meet as a "friend", when actually they don't know all those people very well.

But if you do suspect ASD in someone you know, and you can see them suffering from not having any help for those traits, yeah, you owe it to them to tell them, "Hey, maybe there's a name for this." You're probably not a psychologist (and if you were you wouldn't really be well-placed to evaluate someone who's also an everyday friend), so you can't stick a label on it with any kind of accuracy. It's really the childhood history that would tell a professional what your friend's brain is like, because if they're autistic, their childhood is a time before they developed all those ways of coping, and before they developed ways to pretend to be NT. Autism is usually more obvious in kids, so when an adult gets diagnosed it is always very useful to know what they were like as a child.

But if you see that they have cognitive problems that are creating daily hassles for them, as a friend, you can explain your suspicions to them--that you see that they have some traits that look a little like autism; that you've read there are a lot of people who weren't diagnosed as kids because their autism was very mild; that you're telling them this because it might be useful for them to help them understand themselves, and perhaps seek a professional evaluation if their problems are bad enough for them to need outside help.

Even if it doesn't turn out to be autism after all, at the very least you will have pointed out to them that you can see that they are having trouble, that you care, and that you want them to get whatever treatment that they may need in order to manage those problems. What your friend does with the information is up to them; after all, they are an adult, it's their life and their decision to make. Just remember that whether they get a diagnosis or not, whether it's autism or not, they are still the same person they have always been.
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Thoughts on oxytocin

Oxytocin is associated with the way NTs "group up". It makes you want to bond with someone and trust them, while rejecting anyone outside your group.

So, oxytocin is involved with bonding and trust, and also with prejudice.

I think the oxytocin/autism picture is going to be more complex than it seems at first glance. For example, autistic people are known to trust too much--the opposite of what an oxytocin deficiency would imply. And we are securely bonded with our parents, the same as neurotypical children are--meaning that we don't have issues with bonding, either.

My personal hypothesis? The "oxytocin deficiency" in autistic brains is an effect, not a cause, of our social skills delays. Because we don't connect as easily, we simply don't have the opportunity to produce oxytocin as often as NTs do--but when we do connect, we seem to find it as rewarding as NTs do. Only when oxytocin is associated with real social connections is it actually useful. Otherwise, it would be like telling your brain, "Trust; bond; form groups," indiscriminately. And that can be dangerous. Ask an autistic with an active-but-odd social style what happens when you trust everybody and see everybody as a friend; they'll probably have some pretty painful anecdotes.

What I think this means for everyday autistic life is that messing with oxytocin directly may not actually be too productive in the absence of social phobia. Autistics without social phobia seem to experience social interaction as being rewarding but overwhelming, and for them, the oxytocin comes naturally with successful social interaction--meaning that the best approaches would involve helping them make social connections to begin with; the oxytocin response would facilitate bonding quite normally once those connections were established. With people who have social phobia, the oxytocin might help, because it skews the social outlook toward trust and away from fear--but this would be true for social phobics whether they were autistic or not.

My basic opinion is that oxytocin is interesting to study and relevant to understanding socialization, but has practical applications mostly for people with social phobia. For people with autism in general, a more fundamental approach involving making social contact easier and less stressful would be preferable--a combination of speech/language therapy and communication-related accommodations that teach us how to connect with others and provide places where connections are more easily and simply made.

Jul. 7th, 2014

Fear of disability

The fear of disability is an old fear, older than humanity itself.

If you are a wild animal, being close by to another animal that is ill or acting oddly can be dangerous. You might catch the illness, or the animal's confusion could attract a predator that might hurt you both.

So it is a natural instinct to stay away from those who are ill. It can be seen in humans most significantly in the disgust reaction. If you saw an infected wound, or a sore, or a person with a runny nose and red eyes, you would instinctively back away. That is a survival instinct and it's been around since we had backbones, possibly before that.

But we are humans, and group animals, and that changes things. Group animals will care for weak members of the group because doing that makes the whole group stronger--the weak animal may recover and protect you; or else, the weak animal will contribute despite its weakness because it has been supported by others. Humans overcome their disgust/fear reaction to illness and odd behavior when they care for a sick baby, counsel someone with a mental illness, or work in the medical profession. For us, culture and compassion balance out the tendency to reject the weak, injured, or ill, because for us, not rejecting them actually gives us a survival advantage.

If we support Grandma even though she has a bad heart, she will teach us how to grow a garden. If we support the veteran who comes back with only one leg, he may become a skilled watchmaker. If we support Van Gogh despite his mental illness, we get his artwork. Because we have the ability to cover another person's weaknesses, we've grown into a species with an instinctively compassionate reaction that often overrides the fear and disgust that come from the more primitive parts of our brains.

That doesn't mean that those fear/disgust reactions vanish, though. People still have them, and if they listen to them, they can grow into unthinking prejudice that, however illogical, leads to the same rejection of the ill or injured that would take place automatically if we were lizards instead of human beings.

Jul. 4th, 2014

Bittersweet News

I spend some time each day monitoring the news and maintaining the Autism Memorial site, and lately, things have been unusually quiet. This year so far, 2014, I've added only seven new people, mostly children. That there should be any is bad, but that the new cases are a trickle instead of a flood is somewhat hopeful.

Recently, the killers of two autistic teenagers, guardians who were supposed to protect and teach them, were brought to justice.

Brandon White, age 15, was killed by his mother's boyfriend, who tied him up and suffocated him. Brandon's killer was sentenced to 90 years, and it will be 45 years before he'll get out. Good riddance. Justice came too late for Brandon, but at least the murderer will never do this to another boy.

The other trial was for the killer of Melissa Stoddard, the 11-year-old girl who died, after a long period of physical and emotional abuse, because she was tied to a plywood board with her mouth duct-taped shut. Melissa's stepmother was convicted of first-degree murder and given a life sentence.

These aren't the slap-on-the-wrist sentences we're used to seeing given to people who murder autistic children. I hope it's a trend that continues. Actually, I hope we never see another murder, but that's too optimistic and I know it. I just hope the new cases continue to slow down, and that when an autistic person does die, their killers are treated just the same as if their victims had been non-autistic.

May. 24th, 2014

I am not a Killer

You know that study, the one that's been in the news lately, about how lots of serial killers are autistic?

This one?

That study... Yeah, it's bad science, or bad journalism, depending on whether it's the researcher or the reporter who made the leap from "people say you have autism" to "you actually have autism".

What they did was look at news articles about serial killers and mass murderers. Then they checked to see which ones the press had speculated about having ASD traits. About a quarter had had a newspaper reporter make that assumption about them. Only one, Adam Lanza, had a pre-existing ASD diagnosis.

So, the only conclusion you can draw is, "journalists like to say that mass murderers and serial killers have autism."

In reality, autistic people can become murderers, but we are not more likely to become murderers than NTs are. If you take the whole population of people with autism, and check to see who commits crimes, there's no increased crime rate among autistics.

Here's such a study:
Pervasive developmental disorders and criminal behaviour: a case control study.

The prevalence and pattern of criminal behaviour in a population of 313 former child psychiatric in-patients with pervasive developmental disorders were studied. The patients were divided into three subgroups and compared with 933 matched controls from the general population. Age at follow-up was between 25 years and 59 years. An account of convictions in the nationwide Danish Register of Criminality was used as a measure of criminal behaviour. Among 113 cases with childhood autism, .9% had been convicted. In atypical autism (n=86) and Asperger's syndrome (n=114) the percentages were 8.1% and 18.4%, respectively. The corresponding rate of convictions in the comparison groups was 18.9%, 14.7%, and 19.6% respectively. Particular attention is given to arson in Asperger's syndrome (p= .0009).

So Aspies are more likely to play with fire, but for every other crime, we're either much less likely (classic autism) or no more likely (AS) to commit a crime.

The serial-killer study does not connect autism with murder. It connects murder with retroactive speculation that you may have been autistic--and that says much more about how people talk about crime, than about how autistic people actually behave.

To my fellow autistics:
Don't let this affect your behavior. Let them talk. Let them call you killers, if they want. You are still the same compassionate, caring people you always have been. You do not have to become vengeful or turn prejudice back against NTs, just because they claim that's what you want to do. Once you have set them straight and they still call you a killer, there is nothing you can do about the way they talk. The best revenge is to be the person you know you should be. When you help rather than hurting others, you don't need to have people praise you for it, or even notice it. Let them call you killers--you will know you are not; you will know the world is a little better because you are in it.

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