Masking Goes Deeper Than You Think

Jess MahlerLeave a comment

Masking is a skill that many autistic folks learn to blend in with society around us. It sounds like a good thing, but it isn’t. At least, it isn’t an unmitigated good.

Masking has two big problems and a host of smaller ones:

  1. It takes a huge amount of focus and energy. For me, an hour’s heavy masking is as tiring as an hour playing outside with the kids. Imagine playing catch, tag, seesaw, swings, etc for 8 hours, and you might understand how tiring the average work day is for many autistic folks.
  2. It keeps us from connecting with people. Making friends, having relationships, these things require honesty. When we’re masking you can’t get to know us as we really are. And that isolates even more than just being autistic does.

I’m not saying people shouldn’t mask. Every autistic person should be able to decide for themselves when masking is worth it. I usually mask when dealing with the apartment manager. Reducing miscommunication and not making the manager dislike me because of my ‘weirdness’ is worth the effort and the manager isn’t someone I’d ever be friends with anyway.

Most autistic folks are aware of this. We live it, after all, those of us who can mask.

But something I didn’t realize until very recently is how deep the mask goes.

My writing has been a mask.

I spent years teaching myself a ‘professional’ writing style. I did well enough that at least one reviewer compared my writing to McCaffrey and Lackey — high praise!

But I used to have my own style. A very different voice, much more narrative style.

I’ve been told it had a ‘dream-like quality’ in places.

I think my autism has influenced that — writing the world as I experience it creates this distance and narrative feeling that isn’t the norm for modern writing which emphasizes ‘immersion’.

I’m giving myself permission to reclaim that voice– and sitting down to redraft this unfinished story in that voice has me holding off a panic attack!

Wish me luck and send tea!

— Me on twitter this morning

See, masking can become a habitual. Something we do reflexively without even realizing we are doing it. I taught myself a ‘proper’ writing style so well that for several years I forgot I had ever written differently. This summer, reorganizing my files, I found some of my old stories. Things that never got published. And I read how different they were. How — to me — much more real they were.

I started crying. And I promised myself  I’d reclaim my writing. That I’d let my real voice show through. At least some of the time. (Hey, I can still choose to mask sometimes!)

Then I started having a panic attack because the idea of publishing my writing in my voice, of letting people see the real me — that was terrifying!

I sat down yesterday to draft out this short story idea, and immediately fell into the mask. Habitual. I caught myself this morning, had a brief panic attack again, and started redrafting.

Here’s both versions of the first couple paragraphs:

They dragged Lilah and his siblings out to the beach in the early morning. One by one, the guards stripped them and forced them down onto the sands and tied them spread eagle to posts hammered deep into the ground. Then the guards left them under the quickly-heating sun. Was it mercy or a different kind of cruelty that they were well above the high tide line? Next to him, he heard his siblings struggling and cursing, fighting the ropes. Lilah looked inward, fighting a different battle. The beast clawed with inhim, desperate to be free. If he released it, it could rip him free of the ropes in moments. But if he did, the beast would immediately turn on his siblings.

“Lilah? Lilah!” Sherzod called. The beast tried to take advantage of his distraction and rise up, but he managed to force it back down.

–Take 1

 

It was early morning when the guards dragged Lilah and his siblings down to the beach and staked them out spread-eagled above the high tide line. Dalma and Sherzod fought and cursed the guards, frantic not just with fear but with ignorance. They had no idea why the guards had broken down their doors and dragged them from bed.

Lilah knew why he was here. Knew it with every tightening of the ropes — the beast which had been growing within him since he was attacked in the woods two nights since fought against his control, desperate to break free and tear everyone around them to pieces. If the beast wouldn’t have killed his siblings as well as the guards, Lilah might have let it. If his siblings hadn’t been here, Lilah wouldn’t even consider letting the beast free. He’d gone to the guards to ask them to kill him so he couldn’t harm any one else.

–Take 2

I thought I had gotten a handle on my masking years ago. I hadn’t.

It still permeates my life down to something as central to me as my writing. I’m taking off the mask. And I’m terrified. But it’s the right thing to do.

I am an awesome writer who deserves to be seen as I am, and not as I think the world wants me to be.

What about you? What are you still masking habitually?

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Autistic-Style Conversation (Autistics in the Wild?)

Jess MahlerLeave a comment

I promise — this is going to be about autistic-style conversation. But first I need to get something out.

As dehumanizing and shitty as it would be, sometimes I wish we could have had a David Attenborough-style documentary on autistic folks ‘in the wild.’

Like, have a group of autistic folks living together, old Attenborough narrating our habits and lives and explaining, as he did so well, why we do what we do.

It’s really shitty when documentaries of actual animals are a step up from how your people are usually described and presented.

I don’t want to start doing the kind of ongoing blog series I used to do for Polyamory on Purpose. But I may have blog ‘themes’. Where I’m not committed to writing a certain topic/idea, but when I feel like it, I add another post to this theme tag.

“Autistics in the wild” would be my first theme.

Where’d that come from?

The above (and the below) was inspired by a comment I left in a Quora reply thread about how autistic folks socialize when left to our own devices. Autistic-style conversation has come up several times over the past few months. I’ve had a few conversations, seen some Twitter threads. I think someone had a blog post… I don’t remember and couldn’t find it. (Put out a call for help on Twitter, if anyone finds it I’ll update.)

Anyway, it’s been a topic.

A topic that is, in fact, the main point of today’s blog post. But I had to get the bit about David Attenborough off my chest.

Autistic-Style Conversation

Did you know that autistic-style conversation is a thing?

It is, really.

So much time has been spent figuring how to ‘teach’ autistic people how to ‘socialize’, that none of the ‘experts’ ever stopped to ask the critical question. How do autistic people socialize? The ‘experts’ assume we don’t and need to be taught how.

Nope. We do, we just have our own approach.

It’s a wonderful scary feeling — realizing that you’re not wrong or broken. You really are just different. The people trying to help you spent years teaching you your difference was wrong. That the only right way was their way.

It isn’t.

It’s a Spectrum

No, not autism. Well, I mean, autism too. But autistic-style communication. There isn’t one way autistic folks communicate and converse. No more than there is one way allistic folks communicate and converse. Some allistic folks get right up in each other’s faces when they talk, some leave a lot of ‘personal’ space. Some are loud, some are quiet, some ‘take the piss,’ others are very polite. Some use cooperative overlap, others don’t distinguish between overlap and interruption. You get the idea.

Nothing I say applies to all autistic people or all autistic conversations. (That’s obvious, right?)

So we’re going to talk about one type of autistic-style conversation today. The type that I and my autistic family circle are most likely to engage in.

Our Autistic-Style Conversations

The early stages of this autistic conversational style involves searching for a topic. We all bring up various things we’ve thought of, done, seen, read, etc since the last time we talked. Sooner or later, someone brings up a topic that gets other folks engaged. Something that makes multiple people sit up and go ‘Ooh!’

Then we latch onto that topic and dig into it. Conversation often becomes very intense with one or more people losing our volume control in our focus on the discussion. Cooperative overlap is heavy.

As the intensity dies down, conversation will shift towards a series of short monologues. I say what I think, not in a sentence or two, but in several paragraphs. Then someone else steps in to share their experience, again talking for far longer than allistic people tend to consider polite. ‘Dominating’ the conversation, except that we all do it as we feel we have something to say.

Sooner or later, someone says something that reverberates with everyone, and the intensity ramps up again and there will be 2-4 minutes of pure cooperative overlap, ‘talking over each other’, except we are talking with each other. And eventually, that dies down and we go back to a more deliberate conversational pace.

We rarely stay on the first topic. One topic leads to another to another.

Winding Down

Eventually, one of two things happen. We need to stop before we are really done — we get too tired to continue (executive dysfunction kicks in, aural processing starts acting up, someone’s getting sensory overload, etc.); or something interrupts. Or We run out of things to say and reach a conversational dead end.

If we reach a conversational dead end and still have time/energy/desire to keep talking, we go back to the beginning and find a new/previously missed topic. “Oh, you said X — tell me about it.”

Our Autistic-Style Conversations (Take 2)

Sometimes there isn’t any topic that makes two or more people excited to talk about. Or we don’t feel the need/desire for that intensity level in a conversation.

In that case, things take a different turn. During the ‘finding a topic’ part of the conversation, someone asks a question about something they’d like to hear about. The person asked then talks about that thing, with the listener asking questions or making comments but generally just listening. Sometimes someone just wants to listen. When the speaker finishes, the listener will then ask another question to prompt the conversation. Other times we trade back and forth — when I am done talking about my writing, I ask the other person(s) about the family visit they had planned. Then it’s my turn to listen.

Stuff I Missed

There’s a lot I didn’t cover here — how stims factor into conversation, the way we will often all be quiet for a time to give the current speaker space to find the words they need, etc. But this hopefully gives you a starting point.

Ethical NonMonogamy > Polyamory

Jess MahlerLeave a comment

Ethical nonmonogamy is more than polyamory.

I doubt this is news to anyone actively following my blog, but it’s something of a pet peeve of mine.

Mainstream media and, by extension, many monogamous folks have taken to either

  1. Using ‘polyamory’ as a stand-in for ethical nonmonogamy or
  2. Speaking as if polyamory is the ONLY kind of ethical nonmonogamy.

At best, this is leading to a situation where swinging, open relationships, relationship anarchy, ethical polygamy, etc, etc, are all treated as sub-sets of polyamory. At worst, other nonmonogamous folks will be forgotten or talked over. Hell, they already are. It’ll just get worse.

Polyamory Is becoming the New ‘Gay’

We’ve seen the same issue before in the LGBT+ community. Where ‘gay’ became the stand-in for everyone under the umbrella AND a term specifically for homosexual men. As frustrating as it was, it was somewhat understandable as there was no actual umbrella term.

These days there sorta is one — more and more folks are using ‘queer’ as that umbrella term, though not with anywhere near universal acceptance.

Ethical nonmonogamy already has a perfectly good umbrella term — ethical nonmonogamy.

Hell, why not just ‘nonmonogamy’?

Why do we need to keep proclaiming our ethicalness? It’s not like monogamous folks go around talking about ‘ethical monogamy’ to differentiate themselves from all those unethical monogamists. (There are a LOT of those, you know.)

NonMonogamy. It works. It’s a perfectly good word whose meaning people either know or can figure out just from looking at it.

Not-Monogamy. See. Easy.

Yes, It Matters

There’s a reason my latest book wasn’t called ‘NonMonogamy and Kink’. I was talking specifically about polyamory and polyamorous culture and how it can mesh with kink and kinky culture. Polyamorous culture is different from swinging culture. Swingers may get some benefit from reading Polyamory and Kink, but I don’t know swinging culture. I’ve never been part of it. I don’t know what (if any) unique problems swingers might have adding kink to their relationships.

And that’s okay! Maybe if there are real issues, a kinky swinger will write their own book about it.

It’s not okay when magazine articles and major media blogs and other stuff act like (ethical) nonmonogamy=polyamory.

It doesn’t.

Nonmonogamy is more than polyamory.

And I think that’s pretty cool.

Autism: Functioning Labels Don’t Work — What Does?

Jess MahlerLeave a comment

Autistic people have been saying for a while that we don’t like functioning labels. There’s been an ocean of electrons used up in blog posts, podcasts, Twitter threads, and Facebook rants about it. I’m not going to recreate the wheel.

But folks who like using functioning labels (who are mostly parents and autism activists but also a minority of autistic people) have one good point. Not every autistic person is the same and the experiences of, for instance, a nonverbal autistic person and a hyper-verbal autistic person will vary widely.

The problem is that those are often the same person. I, for instance, can be both hyper-verbal and nonverbal depending on the situation and my current mental load.

(Mental load is a me-term, by the way. I use it to refer to how much my brain is trying to do at any given moment. High mental load means my brain has a good chance of running out of processing power and ‘BSOD-ing’ (blue screen of death-ing). That moment where your brain just freezes up and you can’t think, even to answer a very simple question like ‘what’s for dinner?’)

Becoming nonverbal seems to be one of the ways my brain copes with high mental load. Processing power is re-routed from the verbal parts of my brain to other, more critical areas. Or at least, that’s the metaphor that best describes what it feels like.

That’s not the only thing that can have me ‘going nonverbal’. Hopefully, it gives you some idea of what I’m dealing with and why you can’t assume I’m ‘high functioning’ because I manage a single conversation well. Or have an active Twitter account.

Do We Need Labels at All?

In spite of how autistic people’s functioning is much more varied than the terms ‘high’ and ‘low’ functioning make it seem, it really would be helpful to have a way to discuss the needs of Autistic person A, how they compare to the needs of autistic person B. Because if you can do that, you can say ‘this therapy/support/treatment will be most helpful to people who experience autism like Autistic person A, but is not very helpful to people like autistic person B.’ And getting appropriate help will be a lot easier.

Amazingly – there is a way to discuss that. A way that is much better than the binary ‘high’ and ‘low’ functioning.

Even more amazingly, it’s part of the official diagnostic criteria. As in, this is what doctors and researchers actually use to differentiate autistic people’s needs. Or should. Because despite this ACTUALLY BEING IN THE DSM, we still see research papers about ‘high functioning autistics…’

Sigh.

Now, the DSM isn’t great. In fact, I have a whole rant saved about how not-great the DSM criteria for autism spectrum disorder are.

But this is something the DSM got right. Or at least, closer to right than anyone else has managed.

Before we get into that though, there is something I want to get off my chest.

There is no such fucking thing as ‘autism level 1’. People talking about ‘levels’ of autism are distorting the DSM’s supporting needs system and don’t know what the fuck they are talking about. ANYONE who is using ‘levels’ of autism needs to sit the fuck down with someone who ACTUALLY FUCKING UNDERSTANDS AUTISM AND THE DSM. Learn how they are taking a really decent idea and fucking it up for everyone.

Ahem.

With that out of the way… let’s take a look at the best system I’ve seen for classifying different autistic experiences and the needs of autistic people. Even if it is from the fucking DSM.

Support Needs Levels

For folks who want to check it out, the not very readable official chart from the DSM is down at the bottom of the page. (The ideas are decent, the presentation not so much.)

But here’s the basic idea:

This system focuses on support needs.

Support needs are better for individuals than attempting to establish ‘functioning’ levels. 

How much support do I need to do the things I want or need to do in my daily life? Well, I live in a small town with next to now public transportation. So I need to either be able to drive or a way to get around town. If I lived in NYC, I wouldn’t need support to get around, because buses and subways are a thing there. But someone else who can drive fine but can’t understand subway maps might need support in the city, where I don’t.

That’s support needs, in general.

Now let’s talk about autistic support needs.

Autism is officially considered to cause problems in two main areas: Social communication and restrictive, repetitive behaviors. As anyone who actually has autism knows, these categories are entirely inadequate. But they are still better than anything else going, so we work with it.

This is why I say there is no such thing as ‘autism level 1’. It’s ‘level 1 support needs in…’ In what? Which category? Or both?

Severity levels run from level 1 (least severe) to level 3 (most severe).

Now, remember the goal of support needs is to identify what support we need to be able to live our lives. Someone who has support and doesn’t seem to have problems still has support needs. They may look like they don’t, but a duck also looks like it’s just putzing along while its legs are pumping a mile a minute under the water. Just because you can’t see it doesn’t mean it’s not there.

Now, most folks who can pull off the duck routine are going to be in a level 1 situation. If you need significant supports, those supports are likely to be obvious and/or are likely to be not fully adequate.

With me so far?

Okay, last point and the most important one – remember my example about driving and NYC? Support needs can be situational. There was a time a few years ago when my Social communication would likely have rated support needs 3. Or high on level 2. I carried a tablet or phone with me everywhere to type because very often I couldn’t talk. I didn’t interact with strangers unless I absolutely had to and rarely interacted with family and friends.

It turned out, I had a B12 deficiency. A pretty massive one. Plus postpartum depression and a bunch of other stuff going on. When I got the other problems treated, my ability to communicate and handle social stuff improved immensely. These days I’m level 1 social communication.

That’s an internal situation affecting support needs. But there can be external situations too. If I tried to go back to school, for instance, I’d likely end up back at level 2 within a few weeks. And if I managed to keep going, level 3 by the end of the semester. The added mental load (from constant socializing, from needing to adhere to a schedule that didn’t suit my life and needs, from the actual school work) would result in severe burnout and ‘regression’ within a month.

I do as well as I do because I have had significant help in structuring my life to that end.

Using the DSM Support Needs Levels

The support needs severity levels run from level 1 (least bad) to level 3 (most bad). For reasons I don’t think HAVE a reasonable explanation, everything that isn’t social stuff, they through into restrictive, repetitive behaviors. So sensory issues (for instance) count in the restrictive, repetitive area. 

Often, only one support needs category will apply. For instance, I frequently see questions about autistic people and our need for routines. That’s a restricted and repetitive behavior question. A person’s communication needs won’t impact their need for routine. It may impact what their routine is, but that is another matter.

Now, not many folks know about support needs levels. But with how common that ‘level 1, 2, 3 autism’ thing has gotten, most folks will probably understand. “I’m autistic/my kid is autistic with level 3 social needs, how can I/they find a job?”

See how by phrasing it this way, the person looking for help has made clear what their situation is without making assumptions about anyone else’s situation? And they will likely get more useful help that if they just said ‘low functioning’. Answers will focus on the social aspects of jobs like managing interviews or finding a job with minimal social interaction. Instead of “try for x, y, or z jobs. They are very repetitive and that works better for many autistic people!” This answer may be correct, but it isn’t as likely to be helpful as a more socially-focused answer.

This went a lot longer than I’d planned, but I hope folks found it helpful. As promised here is the official chart, and you can find the full diagnostic criteria here.

Table 1 Severity levels for autism spectrum disorder

Severity level Social communication Restricted, repetitive behaviors
Level 3 “Requiring very substantial support” Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches. Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2 “Requiring substantial support” Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication. Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1 “Requiring support” Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful. Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

 

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What Is Judaism? It Is a Tribe

Jess MahlerLeave a comment

I long ago lost track of how often this question comes up.

What is Judaism? People ask. Is it a religion? A culture? An ethnicity?

It is a question that only makes sense from outside of Jewry. From within Jewry, we don’t discuss ‘what is Judaism?’ We discuss ‘who is a Jew?’ We know what Judaism is. What we struggle with is how to explain it to everyone else.

Before I go any further, I want to give credit to Sam Morningstar, emsenn, and the book The Color of Jews, all of which have impacted my thinking in ways that shaped this blog post.

Interestingly, what took me several years to understand my father, when we discussed it recently, saw as obvious. Part of that is probably that he’s spent a much longer time living Jewish-ness than I have, but also I think he has spent over a decade speaking mainly Hebrew.

See, the word ‘Judaism’ doesn’t really translate from or to Hebrew. If you look at the etymology of ‘Judaism’, it started as the Greek for ‘Jew’. Somewhere in its evolution, it went from being a word for a person’s identity to a word for a philosophy or belief system, which is what ‘-ism’ denotes in English.

Among non-Jews, ‘Judaism’ is usually understood as something like ‘the monotheistic religion of the Jews.’ (from google). However, when you look for how to translate Judaism into Hebrew, you get “יַהֲדוּת” which literally means ‘people of Judah’ and is (approximately) defined as ‘Jewry’ or ‘Jewishness’. 

To Abba, after years of speaking Hebrew and living Jewish-ly in a Jewish society, the answer to what is Judaism was obvious. Judaism is a tribe.

Now, there are problems with using the word ‘tribe.’

It isn’t a very clearly defined word and has often been applied to people whether they wanted it or not. But the immediate association for most English speakers will be something like ‘a group of people joined together by heredity, culture, and beliefs/traditions.’

Tribal identity is conferred, not chosen. Someone can be adopted into the tribe, but can’t decide to become a member themselves. Most tribes have their own faith/religion/traditions which social scientist-types call ‘ethnoreligions’ because ‘religion tied to an ethnicity’ is the best they can understand within their Christian-shaped world view.

“But Jess, Jews can convert to Christianity, and then they aren’t Jews anymore!”

Christianity is just about the only religion a Jewish person can convert to and not be considered Jewish anymore. Islam being the other. Why? Because they both require people to renounce Judaism — to renounce their membership in the tribe — to convert. But someone can be a Buddhist Jew or an atheist Jew or a UU Jew and still be part of the tribe. There’s this whole argument about whether you can be a practicing Buddhist AND an observant Jew. But you are still a Jew.

There’s a reason orthodox Jews use the term ‘off the derech’ (off the path). A Jew who goes off the derech is still a Jew, a member of the tribe. They’ve just gone off the right path. That’s a completely different thing from renouncing and abandoning Jewry.

It didn’t occur to me to use ‘tribe’ for Jewry under I started following Sam Morningstar on Quora and emsenn on Fediverse.

Several times with both of them I have had conversations along the lines of ‘oh, our people do this the same! Isn’t it annoying how Christians/European-Americans never get it?’ The more I learned from them, the more I struggled to find words in English that encompassed ‘יַהֲדוּת’… eventually the two came together and I realize, ‘Oh, yeah, the word I’ve been looking for is ‘tribe.’

It’s not perfect — translations never are. But it’s way better than anything else I’ve come up with for trying to explain to Christians and atheists raised in Christian hegemony that ‘Judaism’ isn’t religion OR ethnicity OR culture, but some larger thing that sort of but doesn’t include all three.

Now, most tribal peoples are also indigenous. I want to be clear that I’m not trying to claim indigenity. I think we could have a good conversation about what being indigenous is and how it can/cannot apply to peoples who have been forced into diaspora. But that’s a conversation for another time.

Jews are/were a tribal people in diaspora.

As we have/had been in diaspora, different groups of us have evolved in different directions, developing new customs, traditions, and even languages.

Several other tribal peoples have been forced to survive in diaspora or partly in diaspora and the struggle to retain a cohesive identity as a people is another thing I have heard from others that resonates with Jewish experience.

Of course, there is a major split in יַהֲדוּת now — many of us are no longer in diaspora. That’s causing a whole lot of fretting, discussion, arguing, and lots of other synonyms for ‘people trying to figure shit out and always agreeing’.

Anyway, yeah. That’s my final answer. What is Judaism?

“Judaism” is a tribe.

A tribe in/from diaspora.

Jews are people who belong to the tribe. No matter where in the diaspora they come from. No matter if they were born to the tribe or were adopted (‘converted’) as adults.

It is as simple, and as complicated, as that.

Thanks to emsenn also for doing a sensitivity read of this post.

Is It Time to Stop Self Reflecting?

Jess MahlerLeave a comment

For the past two years or so, this blog has been an exercise in self reflection. But I think it may be time to move on. I’m not looking inward any longer. I’m looking outward.

That’s a large part of the reason posts have slowed down. I realized almost all my posts were about my books because I just didn’t have anything else to say.

When I rebooted my website and blog, I was largely lost. I’d lost track of who I was and what I was doing with my life the summer before and was only just starting to regain my footing. I’d lost some communities I valued and … well … I needed time to focus on me.

We all need time to self reflect. But the things we learn and the ways we grow from self reflection don’t mean anything if we can’t take them out into the world.

It’s time for me to stop self reflecting. I took the time I needed. I healed. I grew. Now it’s time to look outward again.

That doesn’t mean I’m going to stop self reflecting entirely. One of the problems that led to my needing a year and a half or so to really get my feet back under me was that I spent years so focused on survival I never had a chance to stop and focus on me. That wasn’t healthy.

Necessary, but not healthy.

What I’m hoping to do is find a balance, where most of the time I am looking outwards, but once a month or so I take some time to sit down and write a blog post about where I’m at and where I’m trying to get to and my progress on my goals and stuff.

But most of the time I’m going to be writing more the kind of thing that I had on the Polyamory on Purpose website. Just… not just polyamory. And not just focused on polyam folks.

Someone told me recently I should write a book about Judaism and misconceptions about Judaism. I demurred because I’m still learning and there is so much I still don’t know. Then the person who suggested it reminded me that no one knows everything and they thought I knew enough.

I’ve had similar suggests about autism. And of course I’ve been writing about polyamory for a long time.

I’m going to run with that. I’m going to start writing about these topics that folks have asked me for. But I’m going to write for a general audience. For instance, I won’t be writing about autism for other autistic folks (there are several people don’t a great job of that already). Instead I’ll be writing ‘stuff about autism everyone should know.’

And I think I’ll be hitting pretty hard on common misconceptions —  what many folks think they know but they actually don’t.

Anyway, I think that’s the plan going forward. See what happens, right?

Cha-Cha-Cha-Changing

Jess MahlerLeave a comment

I’d like to say Michon and Dilip Numeor Amelia Chetana Wallar and Kid 2 and Kidlet are settled in now, we’ve found a nice rhythm that works for everyone and it’s all good.

But I try not to lie.

It’s been… god, it’s been.

Don’t get me wrong — having them here has been wonderful and I’m sure we will settle into that rhythm… eventually.

But first we’ve got to get through all the hell that comes from moveing across state lines when A) you are a disabled person and B) you have kids.

For instance, Michon ran out of a critical medication, ze doesn’t have health coverage set up in PA, no PA pharmacy will accept hir Massachusetts’ health coverage, and ze has been pushing hirself to make at least a half dozen phone calls this week to try to get the medication through local support services while waiting for local health coverage to kick in.

And being on the phone is painful for hir at the best of times, which these most definitely aren’t.

But we haven’t yet set up the paperwork to let me or Dilip Numetor Amelia Chetana Waller handle these calls for hir. So it’s the catch 22 of, the longer ze goes without medication, the harder these phone calls are, but the phone calls knock hir down so hard that hir flare ups get even worse and ze needs the medication even more critically and… it’s a massive downward spiral.

So Michael is staying with hir this week to take care of kid 2 and kidlet while Dilip Numetor Amalia Chetana Waller is a work, leaving me alone with kid 1 and kidling (which, isolation fucks with me.  Literally nothing fucks with me more than being isolated and alone. [there’s a reason I’m all gungho about group homes, ya know?] ) And the rhythm we HAD started for kid 1 and kid 2 to have summer lessons and keep them in the habit of doing school each day has been completely destroyed and….

Oy, it’s been a thing.

At the same time, between the four of us, we ARE managing. Some how. Like… any one of the dozen+ things that went wrong t his past month should have put me in shut down and possibly burnout. Instead, I’m… well, I’m not good. I’m exhausted and my function is really bad. But I’m not in constant sensory overload. And even I’m in low function I still have function. And what I’m hearing is we are all kind of in a similar place.

Michon expected to be completely nonfunctional by Wednesday. Instead, ze was able to watch kid 2 and kidlet yesterday so Michael to could stay with me for a day bc of how bad the isolation was hitting me. And everyone has clean clothes. and the dishes are clean because Dilip Numetor Amelia Chetana Waller seems to take a sink full of dishes as a personal challenge. (He actually pouted the other night when he got he and the dishes were all clean. And…

It’s been exhilarating and terrifying at the same time. Like riding a surfboard and knowing at any moment you can crack up but always managing to keep that edge of balance that makes the magic happen.

But I am SO fucking exhausted…

Tonight (I’m writing this Friday), we’ll all be staying at Michon’s new place. That’s the one part of our hoped-for ‘normal’ routine we’ve managed to nail down. Every weekend we spend together. Friday evening is erev Shabbat and we light the candles and Kid 1 and I sing the prayers (and others if they want to join in) and we have story time and shabbat treats together.

In the morning, Dilip Numetor Amelia Chetana Waller and I get some time out in the woods. Ideally we want to be hiking more weeks, but if I’m not feeling up to it we take a walking path. Saturday afternoon is for grown up gaming. We’ve got Werewolf and BESM games going depending how who from the extended fam is present any given week. While we play, the kids all get kicked outside to run around and play and get some exercise. In theory Saturday night is quiet. A restful time to hang out together and relax. With four kids, the emphasis there is ‘in theory.’

Midday Sunday is the chance for the older kids to have some guaranteed adult time. They usually ask to play Magic, sometimes Carcassonne or other game. Sunday evening is food shopping for the week. Which ever two of us adults are feeling up to it hits the grocery stores and stocks up on everything we expect to need.

It isn’t perfect. For instance, we discovered this past weekend that one Michon’s perferred self care things is actively painful to me and I can’t be in the room while ze is doing it. And I swear if it would do any good we’d stage an intervention on Dilip Numetop Amalia Chetana Waller’s ass. He keeps insiting that he doesn’t need anything, he’s good, no he doesn’t need a break, it’s okay if he works himself into exhaution, he’s the healthy one among us so he has to….  “D.,” I want to say, “You won’t STAY the healthy one if you don’t take care of yourself!”

Unfortunately, we’ve all tried it and while he gives lip service to the idea, he had a great deal of trouble putting it into practice.

But, in spite of the exhaution and the many many many problems and the need to (somehow) get Dilip Numetor Amalia Chetana Waller to see sense… It’s working.

It’s working well enough that I decided to take a risk on adding someone new to my plate. For over 5 years my focus has been on having LESS to do. The idea of adding anything new to my to-do list was enough to bring on panic attacks.

But for nearly 10 years, I’ve toyed with the idea of doing a webcomic. I’d get hit with an idea for one, want to do it so bad, accept that I had neither the skills nor the time to learn the skills, and give it up. Only to be ambushed by another idea a few years later.

I’m going to schedule in a couple hours art practice a week.  With how well we’ve all held up the past month, I think that will be doable. In six months I’ll take a look at my progress and see where I’m at.

I actually saved the strips from my first attempt at a webcomic.

I Should Be Promoting my Book, but…

Jess MahlerLeave a comment

You may have noticed I haven’t been around much this month — either here, on Patreon, or on social media.

That’s because the most amazing awful thing happened and I am still reveling in it.

Amazing awful?

Yup. See, it’s kinda awful for someone when they are supposed to move into a new apartment and learn at the last minute that the electric can’t be turned on. The landlord didn’t arrange an inspection before you signed the lease. (Being fair, he had it inspected before he put it up for rental, just it sat too long with the electric off and needed to be reinspected.)

But when the result of this bit of awful is that your formerly LDR partners who you haven’t seen in nearly 2 years get to stay with you for over a week while everything gets sorted out… that’s pretty amazing.

It hasn’t been easy — nothing that involves multiple autistic people and unexpected change is ever easy. And it really messed up A’s visit with Michael two weekends ago. (Two weekends! We thought they’d be here 2 days, maybe a bit longer. AHHHH!!!!)

It’s been way way way too much, and absolutely amazing. Also, renewed confirmation of our belief that our living together will work really well when we can afford/find the right place. Even with fighting with utilities, multiple car breakdowns, some family news breaking Michael for a few days, and… Oh, so much more craziness that normally would send me and Michael or Michon or Dilip Numitor Amalia Chetana Waller spiraling down into complete nonfunctional mess. But we are all doing better than we would without all that horrible shit.

Group living isn’t for everyone, but somehow, for us four autistic introverts, nothing is better.

I haven’t written anything about my Generational Household goal in a while. Not since last February when we THOUGHT we had a farm. That fell through — the farmhouse needed too much work and wouldn’t be in move-in condition before we’d need to move given lease end dates and all. So we had to say no. And I’ve kinda been avoiding the whole topic because losing that chance hurt. It was a beautiful place and the landlords/sellers were people I thought we could work with.

But I’ve long collected sayings and quotes about resilience:

Fall down seven times, get up eight / …fall seven times and rise again

The credit belongs to the man who is actually in the arena, whose face is marred with sweat and dust and blood; who strives valiantly; who errs and comes short again and again…

If you fail the first time then you’ll just have to try harder the second time.

You may tread me in the very dirt

But still, like dust, I’ll rise.

You get the idea. (And if you don’t know where these come from, give a google and see what you find!)

We are now living within 15 minutes of each other (instead of hours!). Or, well, we will be once they get moved in. Right now, we are living on top of each other. (Electric finally got turned on Friday. Once the car is fixed (again…) Dilip Numetor Chetana Waller will get finished moving everything in. They’ll probably be settled by the end of the week.)

He thinks he’ll be able to save enough from his new job here for us to start looking for a place we can all live together by this time next year. I think he’s being optimistic, but I can easily see it within two years.

In the meantime, we’ll be spending every weekend together and seeing each other most weekdays. (The older kids will be in cyber school together and will be doing their school work together.)

(My blogging platform is yelling at me about this not being ‘readable’ because I haven’t used headings. I’m finding I like these breaks a lot better.)

Next week, I might delve a bit into how-to-polyamory territory, discussing how we are making this work, ways we have failed at making this work, and what other folks can learn from our experience. Because it hasn’t all been smooth sailing. But it’s still been awesome.

Obligatory new book plug:

Polyamory and Kink is coming out on Friday. Pre-order now with your preferred online retailer.

Taking Questions about Polyamory and Kink

Jess MahlerLeave a comment

As you may have heard, my next book Polyamory and Kink will  be out July 31st. (Or there-about for the paperback, because Amazon is annoying like that.) Anyway, for the first time in a long while, I’ve managed to actually do some marketing  for a book.

(Hey, look at that! Practically a real author, nu?)

Trying to keep going with a good thing — I’m going to do a bit of Q&A.

First, I’m inviting questions about the book on Twitter and Fedi from when this post goes like until 7pm ET.

Second, I’m inviting questions on polyamory and kink generally on Quora. I’ll have my A2As open for polyamory and kink until tomorrow morning.

(It may take me some time to reply to folks —  spooniess+kids+family shit going down [in a good way]. But I’ll get to everyone as quick as I can!)

 

Polyamory and Kink LAM Interview

Jess MahlerLeave a comment

The next Polyamory on Purpose guide, Polyamory and Kink will be out July 31st. A couple weeks ago I had a chance to sit down and chat with Daniel Cardoso about the book, my writing process, and a bit more. The London Alternative Market was good enough to feature that discussion in the June LAM Live. LAM is a market for kink vendors with some educations events attached, and they stream their monthly events. Or at least they do since COVID — not entirely clear on that.

Unfortunately, a ball got dropped somewhere and I didn’t get the link for the livestream. However, Daniel was able to share with me the youtube video LAM made of the June livestream.

Available for pre-order on Amazon and other etailers. Publication scheduled for July 31, 2020.

If I have the spoons (unlikely at the moment) I’ll sit down at some point and transcribe the interview. In the mean time, you can listen to it here.

LAM had some other interesting discussions going, so if you have time, check them out as well!

Like it says on the front, this is a book about polyamory and kink. More specifically, this is a book about adding kink to your polyamorous relationships.

Whether you are curious about kink yourself or have a partner who is entering a kink relationship and you want to know what to expect, this book will cover the bases. Including

 — what is kink

 — healthy vs unhealthy kink

 — how kink will impact other relationships in the polycule

 — how to find and connect with kinksters

 — polyam and kink culture clash (and how to avoid it)