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.

Advertisement

In which the political is personal

The story of the friend

This is the story of a short term friend and my thoughts about our interpersonal drama, justice, pain and oppression. This friend could be triggered by almost anything related to intimacy and sexuality. The topic evoked memories of abuse and maybe boundaries got unglued, and there was fear and anxiety. The unexpected thing is when he got triggered, his response was to talk about the subject even more. He sent email on the subject, and took the initiative to change the topic to tell me all the bad stuff, but also asked me not to talk about it. When someone confides all that personal trauma to me, it makes me feel that I’m safe to them, and that I’m not a triggery person for them. I was not careful enough about those topic boundaries. One time, probably only our second meeting, I said what I thought was interesting about the kink scene (that power relationships are codified instead of coercive as with the culture at large) (not a good topic choice!) and he said he “would like to try that”. That surprised me to hear. I later learned the under stress he might say the opposite of what he believed, because he had been conditioned to never go against anyone. His response to a thing so terrifying was to put on the most convincing act to cover it up, sending the most intensely mixed messages I’ve ever experienced.

Our demons keep hurting us from the inside and they are attention seeking. When boundaries are broken, maybe we can’t tell if we’re looking at our demons in a mirror or if we’re seeing the outside world. It’s not like burning your hand and pulling it away; it’s more like burning your hand and leaving it there. The ongoing pain must have a source, and we’re always looking for it, and we see the demons in other people while feeling the pain.

Meanwhile I was fine with personal topics; it is easy for me to go there when someone feels safe to me, which he did. So we had a landmine of a friendship waiting for someone to set it off. Post-detonation, the narrative was that I was supposed to admit that I was wrong, wrong for doing something aggressive against him. The exact crime is a mystery but is possibly in the neighborhood of luring someone into a false friendship with bad intent, manipulating them to become vulnerable. (Now that I wrote that idea, it does seem likely that very thing happened to him in the past.)

Being elusive

I wonder about my role in relationship messes of course – sometimes it feels like I have no role, but nothing like this is manufactured entirely on one side. I was a simplistic and passive observer, didn’t take a stand, didn’t characterize our friendship any way, put no limits or expectations on it. If he said something I just took it at face value and didn’t consider much that he may have meant something else. I can’t usually see the build up of interpersonal problems, so unless you say otherwise, I assume that nothing is hidden and everything is fine. I didn’t have him in a “friendzone” or any other zone, just open. Some people hate about me that I can be so reflective and so much like an insubstantial breeze, not even quite there.

I’m the sort of person who tends to take the least comfortable chair in a room, because anyone else who comes in will automatically deserve the better chair. I have no business being pretty or having pretty things. I can’t possibly need anything special. “Don’t mind me.” It’s a struggle to believe I deserve the same as others or to put my needs or boundaries into language.

When there’s conflicts involving me, I usually don’t participate directly (I don’t even feel conflicts) but the person having the issue puts energy into pinning me down, labeling, characterizing me. It’s hard to strike at the breeze; the wind is like those inner demons, not really there; you can’t strike until you pin it down. My feelings are never a thing to talk about; I’m just the invisible force acting on their feelings.

Being superpowered

My triggers are hard to put into language, but there are many things that give me anxiety spikes and make me shut down and feel sick, and they shorten my life. So yes I have feelings. Some things that trigger me are being told who I am or what I am, being told I’m worthy or unworthy, being put on a pedestal, and judgments of my intent. It’s all about being defined and pinned down when I’m not that way. I get to define myself, or choose not to define myself (who needs an identity after all?). Other triggers are hearing about sexual promiscuity or seduction (power imbalance!), indirect small talk, empty social gestures, and being told I’m responsible for magical destruction. That last one is what I think of as being superpowered – by which I mean people overestimate my actual power; they project magic abilities on me. My aunt would treat me as if I could ruin something by looking at it and my touch would infect an object permanently. When something goes sour, it must have been my fault or I must be the ringleader. When someone superpowers me, it’s a big anxiety trigger even now.

Here’s how I think about the superpower: Let’s say there was an aggression – I might have tripped you or struck you or insulted you, but could I have hurted you? Saying it like makes “hurt” an action, as if it is a specific intentional thing distinct from other actions. But really, hurting is an effect of doing actual things, so saying that someone “hurted me” is superpowering the aggressor. A real action is something the aggressor could either continue doing or stop doing; they have the power. Realizing that a hurt is an effect and not an action empowers the person who is hurt: it isn’t just up to the aggressor whether hurt happens. We all participate in our own oppression.

One of the arguments with my friend went something like this: “You hurt me / I didn’t mean to / It doesn’t matter what the intent was, only the fact that it happened matters.” Deconstruction: In law, intent does matter but also negligence without intent matters. If someone’s actions were legal and they had good intent and they were not responsible for others (such as a child), then any hurt that ensues is considered the victim’s own fault, for good reason. It’s the difference between blaming the victim and empowering the victim. Blaming the victim is when responsibility for an actual bad action is assigned to the victim, such as “if she wasn’t wearing ___, that wouldn’t have happened to her”. But if the action is magical (no crime was committed) then assigning responsibility to the victim is empowering. If I’m hurt by magic (by superpowering someone else), then I can say “If I can stop being triggered (or otherwise strengthen my thoughts), I will stop being hurt” and that gives me a way out that doesn’t rely on anyone else.

But in the interpersonal sphere, we can’t normally make the choice to stop being triggered (we can’t heal instantly) and so we rely on others to not only not hurt us, but to protect us. When we are vulnerable we give away that power.

Dominance and submission

When there is an interpersonal conflict, the dominant person’s feelings are at stake and the submissive person’s actions are at stake. The conversation between the mob boss and the underlings is about whether the underlings’ actions were in service of the boss’s feelings; no one expects the boss to do anything but sit there, and no one cares what the underling is feeling. Married people seem to get into this kind of debate – “you didn’t do the right thing to serve my feelings” and we forget that there’s my actions and your feelings too. To get back to my parenthetical remark about the kink scene, that’s exactly what they claim to do better: they make the dom/sub roles explicit and purposeful, while the rest of us pretend we’re being equal when we’re not.

I often feel I’m submissive, but at the same time I don’t like relationships with dominant people, so I also think of myself as thriving on equality. If I can’t have equality I go vacant. It is hard to take a different role. With my ex friend, he lost communication once while we were ordering food (he’s autistic too) and things were really lagging with the restaurant people until I finally came to terms with the fact that I had to decide for him what kind of salad to get, or else we weren’t going to get a salad. That’s terrifying for me to control people, even about a salad.

It’s also hard for me to find anger. My friend recounted my abuse of him as if some stranger had done that same thing to my child, thinking that might “bring it home” and make me feel the anger. But it felt like the same story since I have as much compassion for him as for my child. I get that he was terribly hurt, but I don’t link that to anger or the existence of an enemy.

Working for justice

I thought of our friendship as political, as if we were allies with each other in a larger struggle. I’ve never been part of a movement although I’ve spent decades wanting to be a person who heroically works for justice. In truth my life is utterly gray and has been filled with desperation. I have the disability without inspiring any of the pity, no one lowers the bar a little or accommodates. I’m neither pitiful enough nor radical enough. I’m not anything enough, not a cute kid or an amazing artist, so ignorable, so inherently noncompetitive.

I’ve always been in a valley between worlds of people who have coalesced into an oppressed-group identity on one side, and the elite of the dominant culture on the other side (my family). From the oppressed side, I don’t get to be included because I’m not perceived to be disadvantaged enough, but from the other side I don’t get many of the alleged privileges. I have some – for example, my father got me a summer job once just by talking to a business owner and appearing erudite and established and valid, in a way that likely would not have worked for a black family (for example); but I can’t do those things myself.

The quakers can get so self-aware about privilege that it spills into a learned helplessness, and people will overly defer to anyone who appears oppressed. I might have a lot to say about the economy, but if some brown woman named Estrella walks in the room, she’s automatically more qualified to speak, and I feel queasy because the quakers are still using we/they language and Estrella is never really seen as one of them, while Star is. I’m always jealous of those Estrellas – they have more oppression points. It’s the “weaker person is automatically right” syndrome.

I’m actually part of more than one oppressed group, but I don’t feel I have a lot of oppression points – ironically it is the act of buying in to ones own oppression that can make one feel unworthy of it. Remembering that the Christians colonized my Celtic ancestor’s land puts me in a better place to work for justice than if I think of my ancestors as those Christians who later colonized North America. Both stories are true but the first gives me more points and more energy. We get into our oppressed space to be powerful.

Despite being gray, marginal, submissive, and lacking in points, I can be threatening and destabilizing. Sometimes I can tell when I am doing something right because people start to get defensive, and they start counseling me to not do what I’m doing, or they start insulting me or using words like “prudent”. For example when I say I should be accepted as an equal or have an equal voice as others, and that angers them, then I know I’m out of line and I should keep going in that direction. If a vulnerable person gives protective power to a breeze like me, I might blow a door open somewhere.

Personal politics of oppression

I believe fighting from the base of solidarity against all oppression is the true way, but it’s easily twisted. I have more disability so I win. It makes it an incentive to be weak and say “look at all my oppression.” Anyone with a privilege is “blind” to everything. I think all the twisting is a side effect of trying to be genuine and overcome our oppressions, but we’re not always clear where the demons are. Then we’re back to the saying oppressors hurted us, they did something magical, and they have all the power.

When we make politics interpersonal, a fight between friends, I think it can really twist it more. We might try to classify some interpersonal hurt as an instance of a global oppression, then we’re building walls instead of alliances. When I say I thought of my friendship as political, I think maybe it went to the level of playing out a bigger battle between us. Because the politics of oppression is inherently about internal psychological growth, specifically overcoming false narratives, it’s more important that in these struggles we hit barriers and learn from friends, than it is that we win. Winning doesn’t necessarily free us from our existing narrative if that’s the narrative that oppresses us. Winning doesn’t keep friendships intact.

Going irl

I think it is easy to stay black and white and do your justice work on line and not get into trouble. By that I mean you can avoid growth. I worry that the whole realm of “active listening” and all sorts of community building and conflict resolution techniques that I’ve been exposed to a lot has been lost in today’s on line justice scene. When we talk to people off line, hurt happens but there is not a clear line between the good and bad people. I had this thought in relation to my friend who probably found it easier to fight in more clearly delineated camps on line, and maybe didn’t have much experience working through an actual conflict experience in person.

In person you can’t be perfect; you have much less control over how you appear and the energy you send out. You may think you’re being genuine on line but it’s too easy to craft an image. You can fabricate your membership in disadvantaged groups and award yourself all kinds of oppression points.

There’s an idea I keep seeing lately: We didn’t win rights in the past by being nice, so if someone tells me to “be nice”, that’s in itself an oppressive act. If being nice means being marginalized, then yes – telling people to be nice can be a way of ignoring their message. But there’s a related aspect that is critical to working together which is listening and working through conflict. Ultimately when we win the “fight” for universal justice, it won’t be a fight against anyone; everyone will have won.

I don’t expect to hear from my friend again but I’m pretty sure he will bounce back and do great things.

A random link

Today’s thoughts remind me of this stream of consciousness story I wrote 21 years ago, also about being triggered an about being “not there”.

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.