Star Ford

Essays on lots of things since 1989.

a bit about autism for crisis line volunteers

(This paper concerns crisis lines, such as suicide hotlines, rape crisis lines and so on. I’m volunteering for such a line now.)

Autistic people are not woven into the fabric of families and social groups like other people are; our way is to be independent instead of enmeshed – and this point is close to the very definition of autism. Unfortunately for us, that extreme independence can make supportive relationships out of reach, and even push us out of society to the point of being friendless or homeless. Thus, while autism accounts for only about 1% of the whole population, among callers to crisis lines the rate may be a lot higher. Crisis line staff can benefit from identifying autistic traits and some helpful ways to communicate.

Perhaps the easiest way to detect autistic tendencies in a call is when they seem unusually literal. If you ask “are you sad?” they may just say “yes” – only the literal answer to the question without accepting the implied invitation to say more. If you ask “May I ask you a couple questions?” and proceed to ask one question, then later in the call, they may still expect you to ask the second question (because they interpreted that you had exactly two questions). If you ask “How did you sleep?” they may interpret the question to be about the technique rather than about the quality of sleep, and they might answer literally: “I just got into bed and waited.” Or they might say they don’t understand the question, because they interpret the question to be literal and precise, when it might have actually been just a general way to keep the conversation going.

Autistic people have the same range of feelings and the same needs for love and connection and safety as everyone else, but our communication is different. Communication is interpreted more according to strict dictionary definitions of words, and the adage that 80% of communication is nonverbal may not be true for that kind of caller.

One way to be effective is to realize that your tone of voice may not communicate much, and their apparent tone can be misleading. If they are calmly stating “I am angry”, believe the words and not the misleading tone. An autistic caller may always use the same tone and not modulate it for different feelings as other people do. Try to find specific words to convey meaning and don’t assume they get much from your tone.

You can ask open-ended questions, but to communicate that your question is open ended, be literal and don’t rely on softening phrases or anything vague. If asking “What about your relationship?” elicits confusion, try saying “Describe the good and bad aspects of your relationship”. An autistic caller might understand “What are all of your feelings about that?” better than “How is that for you?” If asking “Were you ok after the fight?” results in a one-word answer, try requesting that they tell the whole story of recovering from the fight.

Autistic problems can be specific. If a caller says “I didn’t get to finish a Minecraft construction project before class”, you might wonder if Minecraft is a misplaced target or a symbol for some hidden, deeper problem. But there may be less focus on relationships and the seemingly trivial issue of Minecraft could be the literal problem. The person might be using a tool like that to help structure their thinking and memory, and someone prevented them from using it. Although the problems are diverse, one common thread in the problems reported by autistic people is the lack of agency (control over our time and environment). Our drive is to be independent, but when other people control our money, our belongings, or time, that can be the crisis.

 

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On collaboration

Things that make collaboration hard

Collaboration is hard. In all my efforts to work in volunteer groups in the past, so-called “collaboration” has felt like slowly wading through mud with people who don’t seem to be proposing anything specific, but they also don’t like or understand my ideas, and we’re doing something that isn’t really aligned with what I want to do, while everyone seems to overreact to very minor issues, and my patience wears thin.

In most of my attempts in the general (nondisabled) world, one or more of the following happens:

  • Someone decides “there is conflict” and we need “healing” before we can do anything. I never have any idea what they mean and I sense it is usually a delay tactic. I feel like we all always need healing, but it can never be complete.
  • We get people who want to study the situation forever and others who want it to be done immediately, with not much flexibility between the two groups. In one youth coalition I was in, the young people were really good at springboarding off each other’s inspiration and they wanted to decide things in rapid fire, while the older people seemed to miss that level of communication completely and they wouldn’t agree to anything. The young people had a sense of now, and not of the distant future, while the older people were only concerned with the distant future and could not do anything now. (Since at any moment, it’s always now, I guess they never did anything.)
  • Half the people who show up have the main objective of just using the meeting time to socialize or get attention, or they have no intention to do anything. Therefore, the longer it drags out, the better. Others want the meetings to be a short as possible.
  • Certain people who are used to having more than their share of social power intentionally try to foil democracy, so they’ll agree to democratizing procedures reluctantly, but then skirt them. Others try to make things equalizing and transparent, and that difference in interests tends to make discussions about internal procedures rather than about what the group is doing.
  • Someone will declare that before we can do one thing, we must do another thing. For example, before we can decide what to write in a letter, we need to decide what are objectives are. Or, before we can determine our objectives, we have to write the letter. There is no way to satisfy everyone’s sense of the proper sequence of events.

Parts of collaboration

I think there has to be room for three kinds of activity in “collaboration”:

1. contemplation – brainstorming, venting, listening, and anything unstructured – This takes the most time.

2. business – structured processes for deciding on actions

3. taking action

Any attempt at collaboration probably needs all three of these in some balance.

Autistic collaboration

I think it could take more patience to herd autistics than other people, or even to decide to collaborate. Some day maybe I’ll write an ethnography of our subculture, but for now, here are some unstructured points that maybe it could help to be aware of:

  • Autistic people tend to get triggered; most of us have some level of PTSD, and have extreme responses to situations that seem innocuous to others. So in a group, it’s reasonable to assume that at all times, someone may be getting triggered by something.
  • We’ve often been excluded, so we can get bitter and bring associated baggage to groups.
  • When the topic of collaboration is autism or disability, the fight for power over the conversation often becomes fiercely directed against autistic people. Groups that deal with other topics (transportation, environment, etc) might be more accessible, whereas groups that deal with disability could be more likely to turn us into tokens or “others”.
  • We may not have as much experience with collaborating effectively as others. If being in a group as an equal is very new to me, I might not know how to stay on topic, for example. I might not be aware of what is meant by the various words used to organize, like agendas, minutes, and petitions.
  • We tend to build up our own mental universe of “obvious” truths, which is not as shared with others as we think, and then we’re amazed that other people are so “dumb” because they don’t know what we know, or didn’t read our 10 page essay on the subject.
  • We tend towards “if this is not exactly 100% in line with what I’m trying to do, then I’m outa here”.
  • We sometimes assume that others are acting as a bloc when they are not, or that they are all followers of a certain leader. So if I put forth an idea and the leader is opposed to it, I might assume that everyone is acting as a bloc and they are all opposed to it. That’s discouraging.
  • Most of the people trying to organize autistic people are not themselves autistic at all, or they are a socially effective subtype that is not very representative of the rest of us. So even in groups that are supposedly for us and by us, we might still be excluded.
  • We have issues pretty often with energy level and commitments. I might offer to do some of the needed work, but then life could take a turn and I might not be able to do what I said.

I don’t have any answers, but I’m pretty sure effective autistic (or inclusive) collaboration would look different from effective allistic (or exclusive) collaboration.

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Autistic event titles for the taking

This is a big list of titles for autistic-run events. Some of them are actually usable, so take your pick if you need one! (But some are taken already.)

FOR PARTIES, FESTIVALS, DANCES

The autism party – Autfest
The autism drug party – Autadelics, Psychautics
The big autism show – Autipalooza
The autism pageant – BeAuticon
The autism dance convention – Foxtrauticon
The autistic race – Autidrome

FOR MEETING PEOPLE

The autism hook up convention – Automate
The autism kink convention – Naughtyauticon
The “hot” meet up – Autsauce (using Liverpool accent?)

FOR POLITICS AND ADVOCACY

The nationalistic autism guild – Patriautism
Beyond the critical number of autistics in one place – Autimageddon
The autistic ruling elite – Autistocracy
The autistic “movement” – Autikinesis
The autism dogma convention – Autidboxy
Membership in the autie club – Autizenship
Autism economics – Autonomics
Scary autistic club – Autzilla
Autistic men taking over everyting – Autiman Empire
Sudden release of autistics on the world – Autbreak

FOR SPECIAL INTERESTS

The conference about autism – Auticon
The autistic fliers club – Aeronautism Club
The obsessive autistic conference – Autimaniacs
The autism/geometry convention – Auctogonicon
The autistic philosopher’s club – Thoughtistics, Autologicon
The artist/autist conference – Autichromicon
The youth conference – Auteens
The tool-building conference for autistcs – Autware

FOR ENLIGHTENMENT

The autistic growth conference – Autotrophicon
The autistic utopia – Autopia
The retreat for autistics – Autreat

THE SCIENCE BEHIND THE AUTISM EVENT

The study of autism – Autology, Autiatry
For autistic overanalyzers – Autisectionalists
The embryonic form, or a really cool conference – Autiblast
The know-it-all autistic club – Autipedia
The annoyingly know-it-all club – Autipants

FOR JUST BEING

A place for autistics – Autarium, Autiland, Autorama
A really big place for autistics – Autiplex, Autsphere, Autscape
A really REALLY big place for autistcs – Autiverse
A safe place for autistics – Authaven
Conference for just Living it – Autibioticon
Conference with that autistic feeling – Autipathy
Conference with an attitude – Autitude
The state of being autistic – Autessence, Autihood
For overall greatness – Autacular, Autrageous, Autastic, Autilicious, Autiriffic, Autlandish

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On recognizing me in “them”

I’ve heard teachers say they notice some traits of their diagnosed students in themselves, pretty commonly now, and it makes me feel like there is a shift happening away from the industrial mindset of disability towards a more connected notion, perhaps a narrower gap being constructed between normal and disabled? I hear it as if the person is revealing a weakness, and that connection is starting to be ok where it wasn’t before. This possibly goes hand in hand with the greater number of diagnoses in the fuzzier disability categories, now given to people who previously didn’t qualify.

recognizing me in them

Description of graphic: Three panels. (1) Adult icon shown separate from a group of children, reading ‘Phase 1: Those are “special needs” children [completely separate]’; (2) Adult smaller and connected to the group of children, reading ‘Phase 2: Actually, I have some of those same traits, lol”; (3) Adult in same circle with children, reading: ‘Phase 3: My limitations are expressions of the same underlying diversity that causes the apparent disability of others.’

There are specific people I know who I’d like to encourage to see themselves inside the group that they say they want to help – that is, going all the way to the third phase. They may really be similar to the people in their target help group, but there may be just enough shame lingering that they can’t feel completely inside it. I think if we see the people we want to help as “us” rather than “them”, the help will be more relevant. If we can see ourselves as broken (imperfect, limited), then we can see others as no more or less broken than ourselves.

It’s easy for me to be in phase 3 in relation to kids in a classroom, and I’m getting faster in recognizing if someone is one of me. But I’m probably in phase 1 when it comes to the teachers: they feel like they are in the “completely different” box. Some days I’m overcome with oneness and some days I’m overcome with separateness. There is just one fabric with infinite diversity, and it makes big differences between people. And maybe as importantly as any possibly intrinsic difference, we face different levels of opportunity and accommodation, and get different amounts of shame and time, so we go in all different directions. Even as the one feeling like the functional helper, I might have started out in about the same place internally as the one getting my help.

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on faceblindness and recognition

I think that most people recognize someone through their appearance, then they immediately call to mind everything they know about the person, and that this process is probably common and automatic enough that people don’t talk about it except when it has glitches – such as not recognizing them at all or confusing them with another. But with people with so-called faceblindness I suspect there’s a lot of variation in a number of ways. How do we recognize people at all – through which features? Do we recognize all of a person or only those aspects that are connected to the trigger feature? Is there a gradual recognition that has a patterned sequence?

As my contribution to the field, here’s some case notes on me.

  1. Taking an on-line faceblindness test I recognized only two of the twenty or so famous people, and one of those was by his iconic glasses (Ghandi).
  2. I’ve forgotten whether people who I care about a lot have moved or gotten married or divorced. I’m talking about people who really matter to me. It’s usually in cases where I felt I could have foreseen the change but can’t remember if it happened yet.
  3. Frequently I’ve forgotten whether people are alive or dead, mainly my grandparents and aunts and uncles, and others such as elders in quaker meeting. I’ve been in doubt because I knew they were of an age where dying would be unsurprising, and I had too slight of a personal connection with them to feel the loss personally. I just can’t remember if the death is in the past or future.
  4. At a school where I worked I heard some of the other teachers saying they had a heck of a time telling two of the students apart, and before hearing that I had not known they were related at all, but it turned out they were identical twins. I never confused them before because they didn’t feel alike, but then after knowing they were twins, it got harder to tell them apart; I started trying to tell them apart by sight more.
  5. In a large school I was apparently in an accelerated program, and I did not know that all of the kids in all of my classes were the same kids until I overheard someone talking about it. In experiences like this, I’ve sometimes been able to piece together a number of different fuzzy people that I’d seen for months or years repeatedly into the same person. One time I remember being very excited about realizing that two people I knew were the same person, and then over a couple hours realizing that a third and fourth “person” were also her, as she coalesced from unknowable into a singularity.

When people do things a wholly different way than the norm, it could be that some atypical part of the brain is doing the work, or that some extrasensitivity has arisen to cover for some other deficit, or just that the person’s capabilities are uneven compared to the norm – some high, some low – which is an autistic thing in general. In my case, being faceblind, I don’t use the “normal” data such as facial features, and hair and eye color, but I can still identify people often. In the case of the twins, I just knew what they felt like, so an aura comes into the room centered on a person, the aura makes me feel a certain way, and bingo, I know that’s ____. I’m writing this as a blank because the aura has no words; it isn’t the person’s name, it’s just their whole being. If I don’t think about it, it happens. If I’m self conscious, the ability goes away. As I get older and try to fit in more, it goes away more.

The aura may be timeless and maybe that’s why life and death changes don’t seem to affect my recognition and recall.

Something that came to my attention recently when someone approached me was the sequence of recognition. I could identify in this case a distinct set of steps, and my mind went something like this:

  • 1 second: There’s someone I know. I can feel her willingness to listen, her acceptance of me; she’s safe; she’s in my second circle.
  • 2 seconds: I recall her diagnosis and sorrows, the tension with her husband; her kids are not with her and why?
  • 5 seconds: OK, she’s looking at me as if something is not normal… maybe I haven’t seen her in a long time?
  • 10 seconds: Well I know she’s from Altoona Pennsylvania and has three daughters, and I remember the depth of the middle one.
  • 20 seconds: I think she moved either back to or away to Pennsylvania a long time ago.
  • 10 minutes: I think her name is Tineen.
  • only after looking because of being self conscious of the process: She has dark short hair.

In this sequence, I first recognize the feeling of being othered or not, and the connection through children. So when I say “aura” it’s relational, not something isolated to them, and not something I can see in pictures or video, but often requires them to project the aura onto me. The particular way that I’m less than or equal to them can be important, as is their safety level and their overall moral stance about their place in the universe. I believe I probably then expand to intuit their emotional state at the time and their life story’s emotional pattern. All these steps occur whether I’ve ever seen the person before or not.

In a few seconds I can usually bring up geographic memory and more cues about joys & sorrows. One of the memory points in my favor is geographic – I can remember fairly precise locations of objects and can use this to differentiate people by their origin.

It can take longer to remember her name, and then minutes to days can pass before I recall or memorize her basic appearance and past experiences. It seems interesting that common experiences that we had can be the last thing to come back to memory, or they can be forgotten completely. Facial features to not come “back”: I have to look to ascertain them each time.

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Specificity

There’s a lot of stuff out there aimed at or against autistic people – therapies and services – but there is a big disconnect between that and what we really need. The industry churns by its own internal incentives and since we’re generally not paying, we’re not driving – usually not even asked. I think most of us can feel what we don’t like, when an intervention is done to us, and many can also articulate what we don’t like. But fewer people can articulate why we don’t like it, and almost no one can articulate the alternatives. I’ve asked autistic people what services they “really need”, and searched blogs for it, and the answers, at first, don’t seem to be there.

I’m a pattern thinker and engineer, and creating systematic ways to accomplish things is what I do for a living, so I tend to apply that to everything. Usually if I study something long enough I arrive at some answers – systematic patterns, frameworks. So I’ve thought in that same way: what if autistic people designed our own support system, what would it look like? But my asserting that question and feeling consistent resistance tells me that there is already a breakdown in the very question, which I will get to in a minute.

First, here are some actual and plausible answers to the question “what do you need”, focusing on functional things:

  • a ride to downtown
  • fixing my internet connection
  • a piece of fabric with 2 inch yellow stripes
  • someone to go with me to an office on Tuesday morning
  • a weighted vest
  • a quiet room

Sometimes the support systems can help, and sometimes the system response is something like:

  • We don’t do that.
  • That isn’t important.
  • We can teach skills so you can do that yourself.

Notice these things we need are highly specific and individualized. That’s one thing I’ve learned from just listening: autistic people very often articulate in detail the exact thing they need at that time. In my life I’ve experienced it this way: I’m going along doing everything I can for myself, because I’m naturally independent, but some things I can’t do (because they require some buy-in from someone with more power) and that’s the obstacle. I have a path and I can’t go on until the first thing in my sequence is done. For me the biggest one is personal marketing – I needed someone to network and interview with me in academics and for my job. But there is no agency that can do that, so life is a series of closed doors and I don’t mature and move to the next level in that work arena because I’m still stuck at an “entry level” in work relationships, having not gotten that kind of individualized support.

I was lucky not to get the destructive kind of help, but I’ve seen it. A friend of mine was moving to an apartment, and she needed help, and the system offered lots of help, but it was all according to the agency’s way of doing things. She actually needed things like: an internet connection, a place to resolve problems with her mother, a lot of quiet time, and someone to call and check on her a few times a day. But the team of social workers wanted to have a helper there for hours at a time, and said the mother issue isn’t important now. They were directing every task and pressuring her to go down a different path. The calls and internet and occasional visits would have cost the agency less, but that’s just not “what they do” so it was impossible. I think this kind of treatment is destructive because a person should build her life out of the steps that are the most relevant at the time, and it is that process of moving through life from the heart that gives us more strength and self awareness than just skills training or following someone else’s direction.

Consider the whole economy is a way for allistic people to get what they need from other people; no one graduates and becomes “independent”, so there is no reason why we shouldn’t also have a slice of the economy that supports us in an ongoing way throughout life. It should not be a goal that we graduate from supports.

The industry mindset is to get “better” at “treating” “autism” with “best practices” and “evidence”, all of which kind of thinking commodifies their product into a less creative endeavor, we become the livestock that the practices are applied to uniformly and suddenly there is no reverence for the soul and the spiritual journey. (As an aside, when livestock practices are practiced on animals, I can only assume the same thing happens to them.) So I just don’t feel it is about accumulating evidence supporting the “best way” to do things, and that’s why the original question is suspect.

So if there is a system to meeting people’s needs, it has to be about specificity. I would want to access help that is about growing into my full beauty as the autistic person I am, not just mitigating my failures and being at a remedial level in life. Whether I was getting support or helping others, I’d be excited about finding a creative way to meet the specific needs the person one at a time, without the baggage of assuming what autistic people need.

A really obvious starting point for all this is to hire autistic people to work in the service agencies, tasked with that one-on-one creativity of finding solutions. That would at least make the agencies more accessible to the people they are supposed to serve. Another level would be running the service agencies ourselves. A third level is linking up our time and needs among each other in an accessible market, outside of government.

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In which autistic people build something

There’s a work camp happening soon, and I want to say a thing about inclusion and separation in relation to that.

This is a radical idea – an autistic workspace. I explained it to someone thus: Have you ever been to a women’s retreat or something similar and felt that bubble where everyone is included magically and no one has to fight to be accepted? (Yes) Have you ever seen elementary school kids with similar disabilities play together and create that unique space that you’re not invited into, but you can see that they are communicating their way even if it isn’t the normal way? (Yes) Well this is like both of those things together; it’s a place for us to invite everyone, inclusively, while not being oppressed ourselves.

I talked to someone on line who has a tendency to attack a lot and occupy email lists, and she characterized the type of employment that we’re doing as the “hospitality sector,” which she says is a bad sector to consider for autistic people, because hospitality is not our strong point; and also that the whole thing reeks of sheltered employment. She was implying that we were going to take autistic people and make them do menial hospitality jobs where they could be melting down constantly because of customer interaction, paid a pittance, someone else would be making money off this, etc. I think those are very easy conclusions to come to if you are seeing it from an outside perspective.

It is sometimes hard to explain the difference between retreating and separating; or between inclusion and peer modeling; or between representation and tokenism; or between housing and institutionalization. All of these pairs may look really similar if you’re watching from the outside but the difference is whether you are doing it or it is being done to you. It’s all about the dimension of control. It’s been pointed out that “institutions” are not necessarily big; a single house can be an institution if it operates in the oppressive model, even if it’s a nice looking place. Sometimes we even use the same words to confusingly mean almost opposite things: “peer” is either someone like me (that is, another autistic person that I’m more likely to communicate with), or it could mean someone who’s unlike me (it implies I have defects and they don’t and they will model correct behavior). A place for autistic people to work could be really bad (sheltered employment, someone else profiting from the work of underpaid people who are conditioned to remain at the bottom tier forever) or really good (a place run by disabled people that offers a growth path because it’s built around our strengths).

So obviously Ocate Cliffs is about the self-directed version of all these things.

Outside the dimension of control, there’s also the distinction between the “separatist” ideology (isolating ourselves in like-minded communities) and retreating. The latter is for strengthening so that we can live with everyone inclusively the rest of the time.

Possibly, the idea that we would choose an autistic workspace or living community is threatening because people are scared of us having equal power, and then they justify that fear by glomping together ideas and seeing only the bad version of the idea instead of the good version of it.

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Deep Accessibility

This paper explores five levels of accessibility, extending the familiar notion of wheelchair access to the sensory and cognitive levels of accessibility. It is slanted towards autism-related accessibility, but the framework could be generalized and adapted to other kinds of people. The levels to be described are:

  1. movement
  2. sense
  3. architecture
  4. communication
  5. agency

Basically, I am looking at what makes the difference between a place or event that a lot of different kinds of people can go to and get what they need effectively, versus one that is impossible to get to, threatening, confusing, or in other ways unavailable. Autistic people avoid lots of kinds of places for a variety of reasons, but using this accessibility framework, I hope to make it easier to talk about specifically why they avoid those places, by giving vocabulary to why those places are not accessible, and to make it easier to make those places accessible.

Before I get into the levels, I need to define some abstract things, starting with this graphic explanation of inclusion versus accommodation.

Inclusion

incidence

This chart shows a bunch of people clustered on the left (without a disability), and progressively fewer people who are more disabled or at least more divergent. The three categories are those who are systematically included (the largest group; the one the system was made for), the group that is not included by design but can be individually accommodated by some adaptation, and those who are excluded. Read the rest of this entry »

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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.

20120302balloons

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.

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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.

as_parenting_chart1

The joyful middle

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