On the Nature of Love

I don’t talk to often about ethical non-monogamy, primarily because I think there are already so many people having those discussions with much more important perspectives, including the infinite Michón Neal, and deeply gifted Milton Goosby who is always working hard to be a better human, and shares that process with his readers. 

But today I want to talk about something tangentially related to polya, and that is how I experience love. I recently wrote an article about the ways I don’t experience love as an aromantic, nebularomantic autistic person, but that conversation isn’t entirely complete until I talk about the ways I do experience love.  

Because I have difficulty labeling and differentiating between types of love, non-hierarchical polya or relationship socio-anarchy, which to me is concerned with the overall well-being of the group or network with all parts being equally beloved, important, and relevant, is the relationship structure I thrive most in. 

There have been four children born of my body, several of my partners of any definition or title have children as well who will always be family to me, a nebulous network of beloved little buddies. The duty I hold to protect and support the small people in my life, is worth mentioning, and worth mentioning first. Kids aren’t just baggage and burdens. don’t be that person.

ok, So let’s talk about love! 

Just to remind everyone as we get into this I’m autistic but I’m not all autistic people. I’m aromantic but I’m not all aromantic people, I’m nebularomantic but I am not every nebularomantic person. Got it? great, let’s go. 

The way that I love people feels expansive like a galaxy, there are points of burning stars, clouds, an infinity of life and light but it has no rigidity, no defined end or beginning. 

As a small child my mother would try to trick me into going to sleep by telling me to visualize the entire universe and then coming to the end of it. I was supposed to basically self meditate on stars I guess, it was the 70’s after all, but what ended up happening is I would become increasingly concerned about the fact that I could not visualize any defined ending to the universe, what was there a giant wall? a fence? what was on the others side of the wall then? what could possibly be there but more universe? 

That is my fundamental relationship to love these days, the way I always have loved and never had words for. There are no defined lines that I can discern. What could possibly be on the other side of my love for a person but more love?  

When people ask me how many parners I have I don’t even know what to say. Some relationships obviously count, people I have talked to about our dynamics and with whom I spend one on one relationship building time with either online or in flesh space, but I also have many, especially autistic friends, my autiloves, whom I love extremely passionately. Where do I draw the arbitrary line in who to count? how often we talk? what we talk about? how they potentially feel about me? None of that makes any sense to me as an autistic person. I don’t want to conscript anyone into a relationship they aren’t interested in, I don’t need reciprocity to love them. But the love is no less real for lack of an allistic approved label. 

My autiloves especially can be difficult for me to define or explain. Sometimes with other autistic people I can have an intense synergy, a spiritual vibrational synching of energies, if you will, that feels to me very similar to what people call soul mates, with none of the requirements, goal posts, or definitions. These folks I may not talk to often since neither of us have allistic social templates or ingrained rules. The combined quiet of two neurodivergent brains just trying to swim the seas of life may prevent socially expected constant contact, but that love is still deep, refreshing, growing, important love.

But what about straightforward platonic love? Well I don’t know really how to specify that, but I can tell you I have friends I love very dearly who more or less fall into a socially accepted category of “platonic” but those relationships are no less important to me, my affection for them no less important because of their friendship status. 

 My heart and mind aren’t hung on my genitals. My care for you does not depend on you being romantically involved with me. I’m happy to love people for their peoplehood, from afar or close up. I don’t know how to divy people into polite little categories. 

So for those of you I love, thank you for being you. 

For those of you who love me, thank you for giving me room to be me. 

For those of you who hold me, literally or figuratively, when I am lost in the sea of my fears and depressions, I owe you my life and that is no exaggeration.  

If you read this and are wondering, did he mean me just then? yes I meant you, you silly beautiful you. I love you too, in all your ways of being you. 

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Making Space for Mental Illness

I have anxiety and depression. 

I am also autistic, acutely asthmatic, have a chronic pain condition, and most likely one or more autoimmune conditions. I have learned over the years how to give my body grace for it’s many symptoms. 

I know for instance, that if I wheeze when I stand up, I have to take it easy and avoid chemical triggers, if my fatigue makes me want to cry that I need to rest until it lets up, if I am sensory overwhelmed or unable to speak to withdraw from stimulus and to fill my day with sensory pleasing activities as well as self regulating stims, and if my body is on fire with pain to be still and treat it as best I can.

I have learned through trial and error that trying to bull through these symptoms will only cause my overall health to spiral. There is no use in being in denial, or pushing through unless I have no choice. It only hurts me….and if I am in a self recriminating mindset, it makes me less productive too. 

I have a lot more difficulty being gracious with my self about my anxiety and depression. Once these two show up I tend to fall into a pattern of negative self talk and fighting myself to try and force these feelings away. 

I understand why, my family history of weaponized mental illness plus internalized saneism and ableism that taught me practically from birth how to be ashamed of my feelings, but not how to process or deal with them. 

Here I am, a breath away from 41(i think) and still struggling with how to treat my mental illness with as much grace as I have learned to give the rest of my body/self. I want to change this, I want to lovingly embrace these parts of me that are not inherently wrong, are not defective, which is only my inherent me-ness plus the imprint a lifetime of othering and toxic familial relationships left on that base shape.  A perfectly fine mix of strengths and weaknesses. 

So now I am trying to change that, I want to give my body the grace to work through it’s emotional symptoms as I do it’s “physical” symptoms. I’ll be honest, I don’t really know what that looks like. I’ve never even imagined what it might look like to not struggle under the weight of this internalized saneism and ableism. 

I don’t know…but I think the first step is in letting myself feel my feelings without the internal dialogue telling myself what a useless waste I am for being terrified or depressed all the time. I think for me the first step is allowing these feelings pass over me as another aspect of me. Not for attention, or excuses(because privileged people should never use our mental illness as an excuse for our oppressive behaviour), not to wallow in them self servingly, but because denying them and trying to shout them down is never going to work. 

I feel like there must be a middle road for me between denial and drowning in them.

Because denial has never worked foe me. It’s time to try some semi-radical self acceptance. Hopefully some day, as I am able to work through this, a next step will become clear. 

Hopefully some day, I will be able to breathe a little easier. 

A Midwestern Ghost Story

A Midwestern Ghost Story

I am a ghost in this hospital. Everyone looks away, through me entirely, or shudders in disgust. The cold air wraps around around my spine, whispering sweet negativity. 

Hospitals make me uncomfortable. The same noticeably neurodivergent and obviously gender non-conforming or non passing traits that make me “weird”, awkward, and uncomfortable for random civilians, makes me automatically suspicious to many self proclaimed authority figures, usually including doctors and nurses. Their scowls and scrunched disapproving faces in turn make me feel more anxious and deeply, fundamentally, wrong. I pick, flap, flail, and vocalize nervously to cope, which makes me seem even more questionable, more suspect.  

I make myself as small as possible as I move through these halls, as unremarkable as possible. If given a choice between invisibility and open disgust I choose the former…not everyone is lucky enough to have a choice.

As an adult I have never had a doctor that didn’t obviously dislike me, not even the nerdy cis woman I talked to about Stargate Atlantis and Fringe for twenty minutes. I had thought that perhaps women doctors would be more receptive to my asking questions, to my me-ness, but that hasn’t proven true for me. 

My last GP gritted his teeth and sneered at me any time I asked a question about my own health care. The last time I saw him he “broke up with me” for irreconcilable differences. It was for the best undoubtedly. 

But how can I get good health care when my doctor loathes me? assumes I am drug seeking because my body language doesn’t meet their expectations? because I find eye contact with angry strangers nearly impossible? 

Well, I don’t, and I haven’t, to be totally honest. I just haven’t, and I am not the only one. IBPOC have an even steeper uphill battle to getting health care that actually helps them. They are fighting hundreds of years of dehumanizing and dismissive systemic racism, both generalized and specific to the field of medicine on top of judgement from any other marginalized aspects of their identity. Visibly disabled people, the mentally ill, immigrants, nonchristians, displaced people, those who are chemically dependent, among many others struggle with getting any health care, much less sufficient health care due specifically to the bias of health care providers. 

After a life time of bad experiences, even being in a hospital for visitation makes me feel alien and anxious, self doubting. It takes a moment to work up the bravery to speak to any of the employees. I’m always mildly shocked if they are actually helpful. 

This trip was surprisingly ok. Thank the fates for that little kindness. Next time I’m likely to not be that lucky, many of us in this country won’t be. 

Healcare should not be a privilege

living without chronic pain and illness should not be a privilege 

yet here we are in a world running, most harmfully, the way it was designed, and only really helping those who are both willing and able to play along in a deadly game. 

I Salem, Partially Nonverbal

Layer by Layer

My experience of being nonverbal is only my own, it may or may not be similar to other autistic and neurodivergent experiences. 

We are not a monolith.

I’ve been thinking a lot lately, about the myriad ways I experience inability to use verbal language for communication. It has led me to want to peel these layers like an onion, to fully examine them. 

I’ve spent my entire life being told by most people, that I am a bad friend, lover, or family member. That because I am to flakey, because I only see them when it suits me, because I don’t know how to reciprocate love and friendship my connection is worthless. It has caused many hurt feelings and broken hearts over the years, both others and mine. 

So perhaps a manual for my self at least…and perhaps it will help others understand that we communicate as best we can, that just because we show love differently that doesn’t mean it was not or is not there. That it is ok for others to not be able to be engaged with the way we love, communicate, or connect. But if a body is able to see us, our love, affection, and companionship is like the ocean, deep, mysterious, sometimes still as glass, but absolutely always there.

1. Passive Emergent Nonverbal – 

This is my default setting more or less unless I am particularly stress free or able to self/medicate my anxiety effectively. 

in this setting, i am entirely unable to reach out to people outside of my regular routine. I usually don’t struggle with what or how to say things in this layer. this is not social anxiety, it detours away from how or what, long before I can get to self flagellation street. During these longer and longer phases I am prone to mild disassociated states which may make me socially passive with people inside the safe schedule of routine, familiarity, and family as well. I may have difficulty with the back and forth flow of conversation, get lost in words, or forget common words like elevator or that one i can’t remember right now that describes a particular feeling of unease. 

My writing will have more skips, more repeated sentiments, more echolalia wording, more awkward sentences, and sentences that eat their own tail..also more visual analogies roughly tranlated into allistic English. I  will more often miss things, am likely to struggle with brain fog as well, and lose track of my train of thought…like I just did. 

But I’m usually aware of feelings of sadness and isolation, and am receptive to verbal communication if a conversational template I understand is presented to me. 

2) Broad spectrum Nonverbal- In these instances I can not communicate at all with words, except with trusted people whom I know can speak this language of English words translated to pictures and translated back into broad stroke synonymous words. This level is often but not always triggered by autistic burnout, panic attacks, or long term high level anxiety for me. People’s response to this can exacerbate or loosen up words depending on whether it is met with understanding or confrontation. 

3) Nope No Written Words Either – This level is, for me, often but not always paired with the second level. It is fairly self explanatory and means I have the same difficulty with written communication as i do verbal. This includes receptive language like reading and auditory language understanding. 

4) Short Term Complete – For me this is usually caused by panic attacks or trauma. During these periods I may be entirely incapable of any communication, or I may only be able to communicate through limited gestures or even just nods and head shaking. Certain soothing stims or familiar trusted people and rituals (or resolution of the anxiety) will usually slowly bring my ability to communicate back at least somewhat.

5) Long Term Complete – During these times I have no words of my own. If I have to communicate with other humans it is often extremely minimal amd entirely echolalia scripted. My word bank feels asleep or in stasis rather than clamped shut. For me this can be caused by trauma, autistic burnout or conversely a soothing routine in which I do not have to communicate with people regularly.

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Now it is important to note that as a partially verbal or selectively mute autistic person i do hold a position relatively privileged. There are autistic people who are unable or unwilling to speak, or use word based communication at all and those people are 1 million percent valid too.


Just because they/we can not verify their/our feelings and connections through words, it does not mean those feelings and connections are not there. 

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cn: *eye contact*, implied nudity

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[image description: a heavily filtered sparkly but disjointed close up of me, a white nonbinary transmasculine person, in the bath, head on knee, looking at camera, during a period of being nonverbal] 

As Autism Acceptance Month Ends

I ready myself to breathe again

It’s warm spring evening in the Midwest. The sun shines as friendly and welcoming as it ever is. My youngest children are playing happily. They’re painting a box yellow, so it can be a better rocket obviously. 

 And now another April is mostly gone, summer will be here soon.   Another month in which supposed Autism Awareness campaigns have belittled, dismissed, isolated, othered, and often outright attacked those they were supposedly in Allyship with. 

Isn’t that just like a fucking self proclaimed ally too? ugh. 
Nothing excuses bad allies, and that importantly includes me…and you, and all of us. I try to remember all the harm done by self proclaimed autism warrior moms who undoubtedly love their children but still do them harm, no matter their intentions. 

Love and Good Intentions will never be enough. 

Ignorance and good intentions is not a defense when harm is done. 
My exhaustion can’t really be extracted from the substrate of my responsibility to be as accountable to others as I expect others to be to me. 

So I reserve or allot spoons for this purpose, daily, much like parenting spoon allotments. It’s important to me to do my best, to not repeat failures of the past. so I allot spoons. 

I’m still exhausted though. shit am I exhausted.

To all my autistic friends I send you my love and support, especially my multiply marginalized, and IBPOC autistic friends. Thank the powers that be we are almost done. We made it through another one, done until next year with the overwhelming flood.  *highfive* 

and here the pressure of going nonverbal looms on my brain so I don’t even have a good sign off. so Instead I will just say thank you, thank you for reading, thank you for your support, thanks for being here. Here’s a picture, for whatever that’s worth. 

[image description: me, a white, nonbinary transmasculine person in purple glasses stares off to the side of line of sight, with a neutral tired expression.]

Friday Morning Reflections

It’s 8:56 am. My children are all gathered watching the new season of Magic School Bus. The teenagers orbit around the edge of the room pretending they are less invested than they are. The sun streams warmly in the window…for now it isn’t giving me a headache. My pain levels are tolerable, what ever that means. Milton will be home soon. My social network ebbs and flows, as they do. For now I do not feel like a burden. It’s peaceful. 

Yesterday we got several pieces of bad news, two of which could have long term negative impacts on our lives. My pain is better right now but my asthma is much worse. I had every intention of writing a lot for autistic acceptance month but autistic burn out has left me struggling to frame thoughts in words at all, much less once or twice a week. I stayed up late last night worrying. My nesting partner is worried as well, depressed and frustrated. We’re both frustrated. exhausted. 

But right now these children are happy, we are fed, we have a home, and all is well. well enough. 

We don’t need or want anyone’s pity, no saucer eyed proclemations of “you’re so brave”. We work impossibly hard for these little moments. We just want to enjoy them, to have the ability to rest now and then. We want to live. It shouldn’t be this hard. 

but it is.

Rest 

So it’s Autistic Acceptance Month

Which generally means that a lot of actually autistic people, both adults and children, are getting the message that they are pitiable burdens blasted at them incessantly. It can be extremely stressful and depressing.  A lot of us, avoid our support avenues, like social media out of necessity…or are unable to let go without and are repeatedly triggered into deep bouts of anxiety, depression, and autistic burn out which can and does usually greatly reduce our quality of life and ability to cope in a world already not built for us. 

It is pretty common NT(neurotypical) compatible parenting practice to make sure not to accuse our NT children of being bad or a burden. That we are mindful in how we phrase our normal parenting frustration, irritation, and yes even anger, avoiding framing our feelings, as an accusation that the child would likely internalize as being their fault. That we take responsibility for our own feelings as parents, and work to not weaponize those feelings as punishment for our children,because we know weaponized shame and anger can do real long term emotional damage to a person. 

Yet somehow this seems to go out the window for certain parents of autistic kids. 

Look no one is saying any care giver can’t have feelings about the intense amount of largely thankless labor that goes into parenting children. I don’t think any of us were truly prepared for how much parenting is. It is a lot, just so much. Sadly in this day and age, non-men often shoulder that burden mostly if not entirely alone. Also our culture’s focus on nuclear families has served to further isolate us from the sort of small tight knit communities we are probably best adapted to. To make matters worse our culture does not over all value the life of nuerodiverse and disabled people, we are across the board expected to struggle and suffer when other abled people would be given benevolent accomodation at the very least.

so yeah, parenting is hard and exhausting, and so much more than we expected. No one is asking you to deny that, no one is expecting you to be a damn robot, all we are asking you is to treat us like human damn beings, treat us with some respect, to not blame us for a cultural lack that we did not create, are not upholding, and are more directly harmed by then caregivers are. 

We are asking parents and caregivers to not weaponize their normal life frustration as being our supposed fault for exhausting them with our wrongness. If it is so exhausting for them to parent a child in an ableist world that is not made for us and punishes us for simply existing, imagine how exhausted we must be, being the actually autistic people in an ableist world who have to directly deal with a culture that does not want us. Imagine how it might feel if in that ableist world,the people who are supposed to be your closest confidants, support network, and family constantly looked at you with blame and accusations rather than the support and allyship you desperately needed. 

It’s heartbreaking and alienating and every fucking day. 

Autism Acceptance is what the autistic community has named as needed, to teach the world how to understand and accommodate us more fairly and humanely. It helps us to live…and it would help them parent their autistic child as well. 

Surely that at least should matter even if they steadfastly believe their child will never grow up to be us. 

#redinstead

Autistic Acceptance Month