In which queer

I had three periods of life that I was more out as a girl, while I spent the in between times hiding. The first of those out times was from birth through early elementary school. I could see gender in others but didn’t feel that any rules about it applied to me. I knew that girls were my people and boys were inexplicable. I didn’t know I was being dressed “as a boy” because I didn’t really notice clothing (except those godforsaken sailor suits which were just effervescing with boy and I still hate them). I have boy parts, so my parents made assumptions but didn’t force it too much (like, they didn’t make me live in a room with football wallpaper); generally I was allowed to be me.

Then, gradually any female expression was extinguished through a conspiracy of peers and adults. If you wear that again, you will be beaten up. If you walk like that, you will be beaten up. You can’t go there. And so on. So that’s how I learned how to carry books, to cut my nails short, to avoid drawing certain things, and all the hundreds of other ways that I was supposed to show gender. I did it to escape being beaten. It was only fear, and I hated doing it. The problem with that technique is that they extinguished most of me, not just a few isolated girlish traits. If I loved anyone, it was dangerous. Adults thought that my efforts to connect to other girls in first grade was prototype romantic behavior, and they teased me, so I learned to keep feelings hidden. It wasn’t just the other kids doing the damage.

The rest of my school years, I was a stiff person who hardly ever talked and couldn’t make friends. If I was asked what I was (like how when someone has a baby, they tragically ask what is it?) I would close up and not be able to talk at all and I’d eventually squeak out that I was a boy, hoping no one else would hear my lie, not knowing any other escape. I’d come home on hot days and run to change out of conformity clothing into something nice, sometimes dresses until that was teased out of me. The rigidity at school was so oppressive and I was lucky to be able to decompress at home.

Bathrooms. After an accident in first grade, they showed me the bathroom designated for me, which I had not known about before. I was actually observant but had probably dismissed bathroom related information because the teachers likely tied it up with gender which didn’t make sense to me. Then for the next nine years, I didn’t use a bathroom at school, not even once – too dangerous. I didn’t ride a bus or go on the playground after third grade, because I could be beaten and no one would see. I developed a radar for where safe adults were at all times, and what my escape routes were. This took up a big chunk of my mental energy all those years and I never relaxed. There were danger zones though, such as the first 30 feet out the back door of the middle school, which was unpatrolled, and I had to cross that to get to a street to the gas station where I parked my bike.

Although I got the occasional kick or punch, and was harassed a lot, I never was full-out beaten up, and I attribute this to my unerring vigilance, and also to some ironic privileges of being trans. Boys target other boys to establish rank, but I was spared that because – as I guess – that kind of bully tends to have a lot of social intuition and they never took me for a boy. Adolescent boys then start attacking girls for different reasons, but I wasn’t seen as a sex object so I escaped that too.

When it came to checkboxes and other gender binary features of adult life, I had been so crushed that I didn’t feel there was any way out. I didn’t know a single other lesbian, trans, or queer person; I had no words for any of it. So I’d check male and then I got put in an all male dorm at college. That was the closest I came to not surviving.

The thing about having a female kind of sexuality while looking like a boy… well, the result was no action on the dating front. My inclination in high school was to wait and hope someone would ask me out, but I had no clue about making myself pretty or locating anyone like me or being assertive. Everyone I wanted to be with was looking for a boyfriend, so all those attempts got nowhere. My only two relationships that worked didn’t happen until age 33.

The second period of being more out was around ages 20-24. I found places to live with all women and was a little less isolated, and even had friends sometimes and some almost-romantic relationships that failed before they really started. My attempt to be out was really pretty weak compared to the first time, but I got some clothes I liked and was optimistic about the idea of being free outside of institutions.

Then this period ended because people would throw bottles and things out of car windows at me, and yell threats, and I was unwelcome to wear certain clothes at Quaker meeting, and perhaps most importantly, money. Work places did not seem OK with people like me, so I felt I had to act like someone else to survive. So I spent 20 years doing that. The stress of it kept going up and my income kept going down as the economy changed and required more conformity. I only recently realized that the fear of losing income was overpowering everything else in life. People might say just be yourself, saying there are openly gay people who manage to keep jobs, but they account for 10% of the population and we aren’t even on the map.

The third period of being out is now. Being somewhat part of an autistic community has given me vocabulary and the opportunity to meet other queer and trans people. That gives me some basic psychic permission to be out. I’m feeling that showing some surface things outwards (like clothes) could get me over some barrier to also be out in spirit. Finding the way out is still a fight against all those hiding tricks that I adopted when I was little out of the fear of being beaten, and a fight against those who go ballistic about any trans person anywhere because it threatens their gender scheme. Even some autistic-run internet groups for women still don’t allow trans women, so getting support is not always so easy.

One main reason I can even think about this now is that I’m in a program for disabled people to work on contracts for state government, and I think they would not find me guilty of working while trans. Therefore for the first time I have a sense that I would not lose all income by coming out. I might lose some of the other clients though. Also there is a lot more acceptance now than when I was 20 and it has been a really long time to be in hiding.

All this has been just a plot line of what’s happened to me, but now I want to say more about what it means to be a gender.

People say “why can’t you accept being male” or “why do you want to change”, and those questions show a misunderstanding of what it really is. It is not about changing me. I’ve always had a male body and don’t anticipate changing that; there is no denial of how I was made physically. It is true that I am jealous of people who get the privileges that come with a female body and don’t feel I’ve gotten the corresponding male privileges that cisgendered males get, so I have mused about surgery for that reason. But that is not a necessary part of coming out, and that physical change is not a substantial change of me; it would mainly be a change of how people see me. It is more a question of acceptance by others than a question self-acceptance.

People also say “why do you want to be a woman”, and the short answer is that I didn’t sign up for either side; it is not about my preferences. The identification with gender is part of a psychic structure formed early, that probably has a nature side and a nurture side, and may be affected by the rigidity of the society that one is in, but it isn’t a choice. The main choice is whether and how to come out or suppress it. Not coming out would be an option too, but regardles of what choice is made on the surface, the inner me is still the same.

People also wonder what traits make a person identify oppositely to their body type. I have some traits that are traditionally masculine (like an engineering way of thinking, and liking wood tools), and some that are feminine (homemaking type things); and most people have some duality at that level, which is not the significant thing. It is about a deeper level of identity. For example, in my college house, having a man visiting was very different than a woman visiting; our private space would recede so he could be in the house but not in our psychic space, whereas a woman would be more admitted into the fold. There’s a deep way that females and males set up opposite camps and have certain barriers and openings to each other, and that’s the level that I’m talking about. Another way to look at it is on the level of the dream life and developmental stages.

I also have a point to make about intersectionality (the phenomenon of being part of multiple minority groups). I’m autistic, trans, and lesbian (depending on how you look at it). The autistic interaction here is very interesting, because it makes it appear that I don’t fit the more usual trans pattern. Some transwomen seem to get more into the makeup and other feminine trappings than most women do. Some might even believe that gender duality is real in a scientific sense and that they are changing themselves by changing their appearance. As autistic people can more easily avoid that kind of fallacy, I don’t really believe that gender exists in that way, and therefore when I say I’m female, I’m mainly saying I fit certain archetypes, not that I’m a thing that actually exists or that the whole topic is black and white. Since I don’t really care about clothes and make up that much (an autism-related trait, at least for me), being trans is not going to make me pretend to care about it more. I don’t shave my legs or wear make up, which is exactly what I would do with a female body. I could never project much of any intentional appearance about anything; projecting in general just isn’t one of my skills (a lot of people totally misinterpret me as conservative or some other kind of enemy of progress because of that). Therefore it could happen that I will never figure out how to reliably pass as female. But I don’t owe anyone that in the first place. Like I said, it isn’t about change.

UNM-CNM Transit Ideas

The attached 8 page paper explains some bold new transit ideas to add to the Bus Rapid Transit idea on the table for the UNM-CNM area in Albuquerque.

UNMCNM_Transit_Ideas (PDF)

On awareness, support, memory failure, and going back in the closet

awareness

In Flowers for Algernon, Charly is not very aware of the world around, and an experimental drug makes him more aware, and smarter. He gets more attractive to others and more successful; life flows more for him. I’ve also been getting more aware gradually, but with different results. I see other auties at a different stage of life than me, and I think “I used to be like that” (in relation to them not being aware of social facts or conventions). But my awareness hasn’t made me any more desirable or fun. I just cower under the weight of knowing the kind of appropriateness-crap that matters to people, when I didn’t know before. The more I solve old stress issues, I become aware of more things to stress about, so the cycle never ends and I never settle into a nice pattern of ignorance. I feel more disabled, the more I find out. My friend said she would twirl and dance in the aisles at the store, until one day she realized people were watching and judging; then she stopped. Awareness is crushing that way. I used to work in the garden and paint in any clothes I was wearing, so I always wore ragged clothes. Now I wear “nicer” clothes and now I try not to get dirty; I’m so careful that I’m no fun. This business of acting like an adult is a lot like going back into the closet and hiding.

Awareness of convention is not necessarily an improvement, and may take away from awareness of self.

coming out

So I desperately want to come out of the closet. I feel like I have so much potential and I can’t wait to find out who I am. I have only the slightest inkling of what I could be. It feels possible that I’d be nurturing, maybe even fun or generous. I wonder if I’d be desirable to be around, and wonder if no one including me has ever known who I am, and maybe that’s why bonds between me and the other humans are so fleeting and tenuous.

On the day I discovered autism, I went out to the patio and walking, almost floating in spirals of thought I said to myself: I have autism… no, I am autism!… no, I am someone! The shame had been so deep that I didn’t consider myself to be anything much prior to then, and the experience of finding out there were other people like me gave me permission to be something more definite.

support

In autism circles there is talk of “support” all the time. Sometimes it means having an assistant for a certain task and other other times it means having a more general kind of encouragement that one is OK. I know in theory that a supportive environment heals and strengthens a person gradually. For example, one of my high schools was more supportive than the other. In one I went down hill and became a scared depressed empty person, and in the other I regained part of the loss. But what would support look like now? I think with support I’d be able to come out of the closet, and I wouldn’t sacrifice awareness of myself.

I can more easily say what anti-support looks like: when I get othered. For example if I do something in the autism “community”, and I’m the token disabled person, there’s a subtle assumption that I’m automatically wrong. That experience eats away at me and makes me weak.

memory

I have a memory problem that is related to awareness and support. I can often remember to pay attention to other people, or to drink water, or to expose myself to new ideas, or to set my boundaries and remember that I can have my own preferences. But I cannot remember all of those things at the same time. If I start to keep one aspect of life close by, the others slide away. If I remember to feel, I forget to give, and so on; thus I’m always at the threshold of existence, never finding my way out of the closet. The memory issue gets worse with greater awareness of convention and with trying to be something. As I learn and expand in social awareness, I seem to forget more easily who people are. For example there are four sisters who I have known since I was little, but when I saw them last summer, there was only a vague recognition, and the stress of not being able to tell them apart from each other was very stressful. Earlier in life when I wasn’t as aware, I would have not known or cared about that problem, but also I used to be able to tell them apart without as much effort.

I was recently reminded that I haven’t had the giggles in years and had forgotten all about laughing. So I added laughing to my list – the list I’ve been accumulating of things to remember. When I add things to the list, the mental sequence is like this: “Oh right, exploring! I used to explore, but I forgot all about it. I better add that to the list.” The things on that list are general things like exploring, feeling, meditating, following inspiration, making my environment pretty, and taking control.

As Yoda says, “Do or do not. There is no try.” The forgetting comes from trying – trying to be something (awareness) and maybe this leads to my consciousness not even inhabiting my psychic circle – I’m somewhere else.

compassion

Sometimes I see someone and I think “she’s one of me”. I’ve come to see that the concept of “other people” really doesn’t exist – if there is to be no othering, there are no “others”. People say someone is “one of my people” or “in my tribe” – but I suppose I don’t say that because I don’t mean to say there is some division between my people and other people. So I say “one of me” to mean that with that person, I can feel the oneness and the accepting of each other without reservation.

I find the kind of compassion I know about mentally is hard to manifest outside the rare people who I can feel are one of me. My dream of being supported is having a continuous link to enough allies so that I’m not going through life in protection mode, and I’d be outwardly compassionate.

Balloons drifting over a hill

An ideology is not just any collection of ideas; it’s a meme or packaged collection of ideas that more than one person subscribes to as a unit; furthermore, the adherents coalesce due to their power relationships, not due to independently coming to similar conclusions. I’ll get back to this.

I’m in a Partners in Policymaking class, testing my patience and compassion, and I’m also alternately reading lectures of Foucault. The overlap between the P in P lectures and those of Foucault is notable: postulating categories of disability, assigning words to them, the shifting fashions of language-creating-thought-creating-character, yet always unconscious of power-creating-language.

Speaker Kathie Snow has a deconstructionist (her word) message, the social model, the anti-labeling “words matter” message, the making disability irrelevant message. Listening to the expansive forewarnings of her show (“She’s going to blow your mind” – over and over) brought into focus the unity with which the non-disabled disability community thinks about itself. I’m already aware that allistic people do that as a rule – create an ideology that is grounded only by historical accident, and cling to it – but was less aware of the exact bounds of that ideology. Kathie has a gift of putting that into tactile relief: the vocabulary and belief system – we could call it “1970″ to indicate the decade when the belief started shifting into entrenched – is the one that says we’re broken but we should be fixed instead of institutionalized. Now she makes a new one, let’s call it “1990″, and I’m seeing these as balloons drifting by a decades-slow breeze over a hill. 1970 is obsolete, 1990 is in. The new one says we’re OK, we’re people first, the attitudes matter more than the disability, etc. – no need to repeat all of its pillars here.

What really caught my attention about this lecture was all the forewarnings about minds being blown, and even reports of people saying they were still struggling with her message a year after hearing one of her speeches. When I listened to the points made, they all seemed reasonable and clearly she had even listened to disabled people and gone through a lot of personal growth to get to that point. But it was not clear at first where the depth or challenge was that they were reacting to. I concluded that the challenge consisted of hopping from one balloon to the next, and that can be hard for people who were deeply adhered to 1970 to deconstruct and learn the new way. It still remains a bit unclear whether the hop really moves a person out of the box, or whether it just reconstructs them in another box. 1990 is supposedly more advanced than the 1970 ideology. I hedge because there are always hidden losses in cultural hops, though I accept it is an improvement overall.

It also occurs to me that Parters in Policymaking is at root a vehicle for ideological influence. I noticed the application materials asked questions ascertaining the ideological position of the applicant, which suggests that one way to look at what they are doing is to encourage people to hop forward one balloon. And it is an expensive long-term battle of words to make it happen; those profiting from the old way will fight change to the end. The role of P in P was further underscored by my experience being selected from among all the participants to be escorted to the director’s office (the director of the managing agency) to be ‘splained to about the ideological basis, with all the warnings and expectations (as if saying “thou shalt have thy mind blown”). While I suspect the program is helpful to the disability rights movement, it was weird that they sensed I might not be compliant or might need the extra ‘splainin.

I wonder if society is condemned to an endless series of ideological balloons like the karmic cycle of rebirth into the same old world, or if there is an escape to truth. Let’s investigate that by popping the 1990 balloon, starting with language. Specifically with “person with disability”, the “new” term. Did anyone decide what a disability is? Is it a thing like a fork? Why do 20% of people have it and 80% don’t? Who decided where to draw the line? Obviously these questions have no answers; ideology is faith, and doesn’t depend on the measurable world. I feel this term is equally non-descriptive as the terms it replaced. The 1990 balloon has an overly neat (false) parallelism across disabilities; the vocabulary chart outlining what to call “those people” exposes that the moral judgment that still exists. The difference is possibly only that in 1970 the whole person is broken (demented, a cripple, retard, etc), while in 1990 the person is divided into a healthy part and a broken part, so we’re now “with” bad things (with dementia, etc). My hedging about this being any real advancement has to do with the new vocabulary of being broken into two things, a person and a disability. Why do we have to be seen as broken at all?

Any ideology implies othering. The power dynamics that create an ideology also create group membership; once you’re in a group (hanging on a balloon), it becomes possible to think about “those people” – others not in the same group. So I wonder if it is even possible to fight for and emplace a new ideology that doesn’t create a “those people”. The concept of civil rights extending to a disabled class is perhaps activated when you first change from the attitude that we are non-people to the attitude that we are people “with” some terrible baggage – that is, going from “disability first” to “people first”. What’s the next way of thinking about us after that? I’d like it to go from “people first” to “people, period” because my thought about where disability fits in the sequence is that it should neither be first nor second. But the comeback is “without labels, what should we call those people, then?” and I say “which people?” and they circularly respond, “the people that the labels identify”. Sigh.

I’d also like to be able to see the 2010 balloon in clear focus, but it is not that clear to me yet. As much as I hope it will approximate truth, but I actually think it will just twist another way to serve another interest. I think it has identity politics in it and that the conflict between this ideology and the prior one creates the conflict between “those people” and the those-people wannabes, and the twisted social logic that everyone will want to get in on the benefits of being oppressed, watering down “real” disability. Before you cringe at what I just said, remember I’m just tossing out the kind of arguments that are happening over the clash of ideologies and how those conversations defy logic. Human variation continues to exist in the measurable world fairly consistently; the way it is re-seen through ideology is what changes.

For most people I think the balloons are as clear as they are in the picture above, but for me and other autists, it takes study to find them. Until recently I didn’t really understand “people first” from the perspective that it is a reaction to “people second”; the two options just looked like equally strange restrictions of thinking. Not being able to notice or follow these things is itself a disability or a disadvantage when working with ideologically based groups. I seem to irritate them a lot.

There’s a lot that the culture warriors do not get, that we get. At least the autistic people seem to get, because we’re not there participating in culture as much in that way and have a view from afar. We get that disability is not medical (it being owned by the medical system doesn’t change what it is). We get that the old and new terms equally define you by your disability when you use those words with that meaning. (Try this: redefine “book” to mean apple, then parse this: I’m going to eat a book for lunch. Exactly zero semantic shift occurred. Get it?) We get that “disability” (whatever that is) should be relevant, not irrelevant, because it is part of identity; there are real permanent differences fueling discrimination; it is not erasable. We get being actively disabled by systems (therefore you can say “disabled” if that’s what you mean). All this built-in understanding doesn’t get us a place in the conversation though. For me, I’m scarred from trying to engage.

But they were never my enemies and I am not a fighter. Seeing the culture war as a balloons drifting in the distance is actually a compassion technique. The culture warriors drawing all the attention to the drifting things are not in swinging distance of me; I can see more clearly from a distance where I don’t have to be protective. Those who were in 1970 may be having a tumultuous time in that box seeing their allies jump and shatter alliances – the mind blowing experience? I’m just sitting here observing the hill from my particular angle. I’m neither better nor worse; I’m just not in that battle. What feels important to me as a person who cannot participate in battles of ideology is that I have compassion for other people’s growth as they battle it out. They often mistake my words as representing an opposing ideology; from where they are, they may not be able to hear what I’m trying to actually say. I will continue to speak the truth that I can; I will no doubt continue to irritate them.

How to control your children

This essay is about parenting, power and control, about how to be comfortable exerting power over your child, and about knowing why and when and how to do it. It’s mainly about autistic children.

Everyone wants their child to be happy and successful, and I am assuming that is our common basis for what we do with our children. But there are some myths and fantasies about the nature of happiness and success that can get in the way.

What are the myths about happiness?

First, there is the widespread assumption that children need to reach developmental milestones on time, and that will help them be happy and successful. If a child is not talking by 18 months, parents may feel that something has to be done about it. If they are below grade level, not making friends when their age-mates are, or not interacting the way you expect, then you may feel they are behind. It may be impossible to imagine how someone could grow up and have a career and be independent when they aren’t talking or won’t do school work, and the tendency is to focus on the milestone that they are not meeting, and push them along towards those desired life markers.

In earlier times, people could compare their children’s development with only a few others, and perhaps there has always been social pressure and theories about the best way to raise a child, but now we have something new – statistics based on millions of children. Psychologists have observed countless children and figured out exactly when they say their first word, start walking, and so on – on average. The more we know about averages, the more the differences between our own children and averages seem to be magnified. Then we may want to make those differences go away. Ironically, the more we know about the science of development, the less we accept variation.

It is an error in thinking to to interpret the scientific observations of averages in child development as if they are prescriptions for each child. With my daughter, this error was first applied in the second trimester of her fetal development. The midwife had a chart of weight gain by week of pregnancy, and the numbers on that chart were derived from averages from observation of a great many pregnancies. The midwife tested the weight gain of the baby and said she was below the normal line, and therefore (and here is the error), she should be made to gain more weight. According to the midwife, not being normal was itself the problem. Although it is true that slow weight gain can be a red flag or an indicator of some potentially threatening condition, that was not the concern of the midwife, and there were no tests made for any such condition. She just wanted the fetus to be normal. She suggested that the mother eat more ice cream, as a way to change the number, regardless of the actual health effect of that approach. Had all that scientific data not been available, that mistake could not have been made.

From pregnancy on, professionals are always telling us what normal is (because science is good at that), and we are getting more and more detailed about how normal development is defined. But we need to understand that all of these details, while they may be interesting, are averages and not prescriptions.

Happiness does not come from being normal or average. (Have you met someone who claims their happiness comes from being normal or average?) People are happy when they are moving on their growth path, not when their appearances are measuring up to a psychologist-defined growth path.

One of the dangers of a focus on milestones is that when the child “fails” to meet them, the focus of intervention becomes failure-oriented or remedial. Once we start believing something is wrong, we focus on the failure instead of the success, and that kind of environment programs failure into the child. To repeat, the myth is that all children supposedly need to reach the developmental milestones that are derived from population averages. The reality is that each persons path is different, and variance from averages is not failure. This is true regardless of the amount of variance – a person who appears (from the outside) to be extremely autistic is no more or less a failure on their path than anyone else, and they are not necessarily any less happy because of their not meeting your milestone expectations.

So far I’ve been talking about the first of six myths – the myth that happiness comes from normal development.

A second myth is that interfering with a child’s natural development is hurtful. The logic of this myth is that there is a “natural” expression of needs, and it is the parents’ job to set up an environment where the child is free to be anything they want to be, or even do anything they want. In the extreme, this leads to parents being unwilling to impose anything for fear of squashing the child’s creativity. Practicalities of this approach aside, it is based on a false assumption that people are primarily separate individuals. People are largely formed by relationships, and there is no such thing as an interference-free developmental path. You can choose how to relate, but choosing not to relate is abandonment. Their happiness and basis of success in life grows from your love and your happiness, not from a lack of structure. Living in highly structured rule-bound environments does not prevent happiness.

A third myth is that suffering is bad and should be avoided. This leads some parents to carefully choreograph the children’s lives to avoid any pain and suffering. Anyone who has had their lives so arranged finds their source of suffering somewhere, anyway. Suffering does not block happiness; we need both. And we need practice with both.

A fourth myth is that having material success, ease, affluence, or other benefits given to you leads to happiness. If you believe this, you may have wondered why, in pictures of African villages where the life expectancy is very low and people have very few material comforts, they often seem to be happy. It’s not an illusion; happiness comes from the spiritual and relational dimensions; not from stuff. And, it comes from the movement and the work, not from the arrival. Unhappy people who suddenly get things, or even win a lottery, do not necessarily become happy. People who work for things, or who work through their suffering, can be happy because of the movement that they experience towards their successes.

A fifth myth is that success is externally measured – such as income and job titles. If you want your child to really be happy, you will want them to be successful in whatever way they measure that internally. Success is connecting the inner story to meeting needs, so that she is the agent who makes sure her needs are met. A person feels successful and happy when advancing towards their dreams, not when advancing towards society’s idealized concept of success.

And the final myth is that when parents selflessly sacrifice their own lives to devote everything to the children, that this benefits the children. The reality is that happiness does not transmit that way; it is more of a two way relationship that depends on the parents’ happiness. It’s also not a reasonable goal to fix their life at the expense of yours; both of you need a life that works for both of you.

People grow up to be successful adults after they have been successful at being children. The rest of this chapter will go over control techniques and the reasons for them, geared towards success in the present, which will invariably set the stage for success in the future.

How much control do parents need?

There are two dimensions of control that need consideration: what aspect of their life is under your control, and how absolute that control is.

• You can control behavior, but not motivations, desires, feelings or any other mental state. You can never control who someone is, only what they do. Trying to make them be someone is damaging.
• Within the realm of behavior, you can only control the two margins: the minimum required and the maximum allowed. It is impossible and damaging to try to control behavior that falls between the two margins.

To make this clear, here is an example of a guest coming over. The child has a minimum required set of actions – such as: she must say hello, she must sit at the table, and so on. Your minimums depend on who you are and who she is, but the important things is they are actions, not internals. You can’t require her to like the guest or to want dessert. Some children cannot say hello or sit at the table, so of course your particular minimums depend on that. You also have maximum limits: she may not make excessive noise, or hit or insult people. Again those maximums depend on who you are.

There are potentially a lot of things that could be beyond the limits, that you reasonably need control over, like poor manners, soaking up all your time, destruction of things, and when she eats and sleeps. She has to be safe, and others need to be safe from her. You need to balance her needs with yours. All of this control is in the margins, which should ideally cover only 25-50% of her life. In other words you prioritize safety and other major things, and you only control part of what she does, and you drop the small stuff. This leaves the rest of her time to her, which I will call the joyful middle.

The joyful middle

Micro-interactions

Micro-interactions are just interactions, looked at in small scale. A main interaction might be that we are eating dinner. A mciro-interaction might be that I reach for a napkin and you move the ketchup out of the way, while you continue to talk. That might seem too little to bother talking about – people might say it is random or trivial. But I want to talk about it anyway because this level of interaction feels really important to me lately. It highlights our neurological connections and differences, more than when you look at it on a larger scale. Sometimes the micro-interactions are very supportive and sometimes they are repressive. If you moved the ketchup, it means you cared and noticed what I was doing.

Micro-interaction experiences

The most recent example that brings this to life is: I had a friend from Autreat visit last week and she brought her partner, and the three of us went out to eat. After that we wandered on the college campus, only because we didn’t know what else to do and it was very windy. We explored art exhibits and theaters in the fine arts complex. When something caught the attention of one of us, we’d stop and allow the thing to make an impression on the others. As we got to a door or intersection, or some other choice in where to go, there was no effort to control the other two people; we were all attentive to the others and would stop and wait for the direction to become a three-way decision. We stood there until the direction took shape, without looking at each other or even always explicitly saying “let’s go this way.” I saw much more in the signs and murals and other objects than I would have without my friend. Little things became bigger.

On another day I was with my wife and noticed that walking in the snow on a hill would send little snowballs down the hill, for a long way. Sometimes they went 200 feet before stopping, and they formed wheels that made different tracks – dotted lines or wavy lines. If you went out to make snowball tracks on purpose, you would probably find it was impossible because the conditions have to be very precise for that to happen. But we weren’t looking for that; we were just open to anything. I remarked that this kind of stopping to notice small things rarely happens with more than two people. Most social conditions are loaded with power differences that make me shut down and incapable of noticing these small things. But it does happen with intimate partners.

A few years ago I was putting a set of board games into a big canvas bag and my autistic friend helped. She alternated with me, putting the next box that would fit properly, all without words. We were equal agents in a larger goal of cleaning up, and seeing this happen was a surge of happiness. Others might use the games-in-a-bag situation to try to win, force me to do it a different way, try to get ego points for “helping”, or some other competitive reason. We just flowed, so flowingly that no words or eye contact was needed, no putting oneself out there, no propping oneself up, no polite gesturing, so much that someone watching might think we weren’t interacting at all. If they thought that, they would be missing the micro-interaction. We were under the radar.

At another time I was at a table with an autistic person and a neurotypical one. The NT was trying to get us to be “social” and was failing. Her questions were dull to me. When she had to leave she apologized and said something revealing that she thought she was the necessary link that made it possible for us two autistics to talk. But in reality she had been the barrier. As soon as she left, the two of us moved closer and looked very intently into each other and quietly shared much more important things than the NT was trying to pry out. This intimacy was there; it is always there and is similar to kind of intimacy you build in a partner relationship, but it wasn’t that; we weren’t even really friends and didn’t touch. All the professionals don’t seem to know about this; why can’t they see it?

At a dinner table with six autistic people another year, it was so memorable because the silences were so supportive of the real. One person would share a feeling, another would share a mental puzzle, another would share her vision of sacredness. It was unbounded by anything, as if no ego was present, and so intimate.

Another year a dinner table of all autistics and one NT really burned into my memory because the two levels of communication were so blatantly separated from each other. The NT carried forth as if she felt no one else was doing anything. She may have felt she had to make the conversation go on all by herself, so it felt like she was all the traffic going over a bridge – loud and visible. Yet the rest of us with higher perceptive sensitivity could interject lots of other things at the same time and carry on another level under the bridge. It was as if we were kids secretly kissing under the table while the adults provided a cover of noise above.

Another time I picked up an autistic person from her house, neither one of us having seen the other before. She skipped everything that would normally be called “social” and said “which one is your car?” It took us about three seconds to get beyond what most people need 15 minutes to do, and it was a relief. A minute later we were talking about childhood memories.

I met another friend last summer, which went so deep so fast, without many words. I wrote about that already.

More!

All of these experiences among autistic people share some features: They are intense, empathic, non-verbal, and under the radar. There is no agenda or ego. There is tremendous space and openness. There is intense reciprocity – watching each other and being responsive. According to theory, we do not do these things. And we don’t normally do them when being watched by people who make these theories. Sometimes we do them in plain sight and are still not noticed, but normally we cower and just wait until no one is watching to be that way.

I experience this a tiny fraction of my life. Is this available to all autistics? To everyone? Do others experience this a lot more often than me? I don’t know.

I want to set up environments where this happens more. In the retreat center (that I’m planning) I hope that there will be enough autistic leadership that even though non-autistic people may be frequently in the majority, we will be able to keep this going without cowering. Maybe we can be open enough that other people will notice; maybe they will open up to it at times.

I want to capture it on video too. It isn’t one of those paranormal things that defies being recorded. But it may be hard to capture because it is fleeting. I want to capture all kinds of micro-interactions, not only these energizing ones that I describe here, but also any interaction – painful, neutral, or otherwise – that reveals neurological affinity and style. I think that having people know about this in general would be a great thing.

NT’s seem to connect power with language. Is all symbolic communication a power game? It all seems intentional and premeditated, and that is a form of wielding power. But at the emotional level, there is no hiding and no winning and that’s what feels so great about it.

Theory?

Perhaps our best communication is less based in language, more sub-linguistic, somehow under the radar of the NT’s understanding. I’m not making a distinction between verbal and non-verbal, but more of a distinction between symbolic and emotional. Typical communication is said to be mostly non-verbal, but the non-verbal parts are still symbolic and intentional. Autistics tend to be better at catching the verbal than the non-verbal, but at the same time we seem to be better at the emotional than the symbolic.

I had started this line of thought with the idea that spoken words were somehow the highest or most evolved form of communication, but now I’m seeing it more like this diagram. Like any diagram, it isn’t true; it is forcing a mental concept onto reality. It puts the spoken language in the middle and suggests that the NTs shift towards the upper levels which are power-wielding, while autists (when in the flow?) tend to focus more at the lower levels which are more equalizing and direct.

I’m not sure any interaction is “macro”, except a belief that the little interactions add up to more than the sum of the parts. When I fall for that belief, it tends to be more scripted and I don’t feel I’m participating in any interaction at all. Somehow when the interaction is tiny, it feels more authentic and I’m part of it. Has this happened to you? Why do you think it is related? Maybe the more direct interactions are just faster because words and power plays don’t slow them down.

Fraud in medicine: worse than you thought

This was written by a doctor about personal experiences. (Headings added.)

I don’t think people understand the sophistication with which scientific journals are being co-opted for profit… There are blatantly unethical things going on such as articles that are ghost written, undisclosed conflicts of interest, and results that are incompletely reported or falsified. But more sinister are the less overt problems…

Targeted advertising

The AMA maintains a massive database with detailed personal and profession information about every doctor in the country mined from many sources. Our prescribing habits are mined from free, drug, look-up programs such as the epocrates app for smart phone. Our schedules, contacts, and relationships are mined from our smart phones and through other sources. Then advertising is very specifically targeted. The advertisement is often very soft-sell – often in the form of something that looks like an objective, scientific continuing medical education resource from a respected professional organization. For example, the pages of journals are individually collated so my journal might have an ad for Allegra and the same journal for my colleague might have an ad for Claritin. An advertiser can tell the publisher that xe wants the ad to go only to women in their first two years of practice, who have >20% Medicare patients in their practice and who prescribe Allegra more than six times per year. Sometimes, in non-peer reviewed journals, the actual content of the articles in the journal are targeted in a similar fashion. Non-peer reviewed journals can be glossy, easy to read, better written than most peer reviewed journals, more clinically relevant, and free. I don’t think most clinicians pay much attention to the nuances of a journal’s editorial practices and rigor – they read something on their desk if it looks interesting, relevant and easy to digest.

Publishing “evidence”, accidentally

Doctors can be co-opted into using their reputation to sell drugs without even knowing it. For example, I can give a talk at a conference. A couple weeks later a colleague (maybe someone I really respect) who is getting paid by a drug company might contact me saying, “Great talk! I have a similar interest. Do you want to write a paper together?” I say, “yes” having no idea that they are getting paid by a drug company to contact me. A month later the colleague sends a draft manuscript (possibly ghost written by a drug company representative). It is my talk almost verbatim but with a table that includes some new drug or a new off label use of an old drug. The text may include a sentence or two about “promising new research” or “alternatives if standard treatments fail.” If I wasn’t a journal editor and therefore alert to this type of scam, I might sign off on submitting it with minimal edit because it looks almost exactly like my talk. I agree with 99%. The colleague just contributed this one little, minor thing. It is an easy publication for me, and I need that for my academic standing. Once the drug is in print in an article written by a respected professional, it is easier for others to include it citing the first article.

Paying for “peer review”

Another example, of something that I was almost sucked into… I was asked by my professional organization if I would be willing to review an article. I was offered $500 to do so. I did not know that the $500 came from a drug company that gave the organization an “unrestricted grant” to write a review article about the disease their drug treats and send it to members of the organization. The article is written by organization staff who knows who is paying the bill and whose job depends on the organization being able to raise money from drug companies. I review it and can collect my $500 having done nothing unethical – money comes from an unrestricted fund at a non-profit professional organization and I provided a professional service for the money. The grant was “unrestricted” so the drug company can’t formally intervene in the editorial process. I don’t have to disclose any competing interests in the future and may not even know which drug company gave the money. What I say about the article or how carefully I review it doesn’t really matter to the organization. Maybe I will barely read the article or maybe I will write a good review. As long as I return a “review”, it can go out under the by line of John Doe with Dr. My Name, Professor at Respected University and as a publication of the respected professional organization. The article is officially peer reviewed (and there is no standard definition of what that means). Maybe I will write a detailed and scathing review, but if I do the editor is under no obligation to make changes. After writing a scathing review and turning down the money, I wasn’t offered another opportunity.

The professional organization maintains its reputation for producing quality academic work because, in addition to publishing this type of article/drug ad, it also publishes a very fine, well-edited journal. Members assume these supplemental manuscripts are subject to the same editorial practices and policies as the regular journal. The organization justifies the deceitful practice of writing these companion pieces as a necessary evil to raise the money to support their quality work. They disclose the financial support for the project in fine print somewhere. Since the drug company didn’t write the article, they can’t be held accountable if the article recommends drugs that don’t have FDA approval or for uses the FDA hasn’t approved. The drug company would be sued and disciplined if they wrote and distributed the article themselves. The article might not recommend something that isn’t FDA approved, and the sponsor’s drug may be a reasonable treatment. However, the article might oversell the sponsor’s drug over other equally good or better options. They might do this by focusing on things like convenient packaging, easier dosing schedule, the taste, evidence regarding how much it changes various lab values rather than how well it improves a person’s health, etc. This type of bias is usually pretty subtle so readers won’t detect it.

Ignoring the evidence

Another technique is to write a whole article reviewing the evidence that a drug doesn’t work and is of no use at all. Then the conclusion of the abstract is, “While more study is needed, X holds promise as the key to saving the world.” Most readers won’t get beyond the abstract. The concluding sentence of the abstract, is the only sentence many readers will see.