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] 

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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

When We Aren’t Socially Acceptable Disabled People Anymore

Our American white colonizer culture loves a plucky underdog story. We swoon over stoic suffering. We adore an inspiring boot strap story about a person who overcomes great adversity to succeed in an emotionally satisfying mainstream way. 

But what happens when our suffering isn’t sexy and silent? When we aren’t productive “enough”? What happens when we aren’t getting better? When we struggle, flailing, desperate for some sort of support? What happens when we don’t know how to reach out or build the “right” sort of connection? 

I’m far from the first person to ask these questions. 

As disabled people we are given both more room to be imperfect, and listened to more intently, the more intersections of privilege we hold. That means that I get more room and grace from the abled people around me than my disabled peers who carry intersections of oppression I do not. It should be common knowledge that IBPOC, especially black non-men are given no room in our dominant white culture to be human, to struggle. This lack of acknowledgement doesn’t end or magically disappear with the disability community. We are not absolved of our racism or anti-blackness because of our, or their, proximity to disability.  This is something that we white disabled people should never forget or gloss over. 

How does this cultural expectation for graceful silent suffering impact me personally? It’s isolating. 

I don’t know who or how to talk to people anymore. I lack a conversational template for reaching out to casual friends. When my social role seems to be support person or advice giver as far as I can tell most of the time? When everyone misgenders me as older woman, team mom if you will, and we all know what moms are for. How to talk to people when all I have is sadness and negative self image to talk about? who wants that? who can I subject to the pain of standing next to me while I drag them down. 

Even knowing that isn’t an accurate assessment of the situation, how to undo a lifetime of being told that my expression of feelings or discomfort were an undue burden on the people around me, exhausting, vampiric, a sign of my inherent weakness? 

I don’t really have an answer. I know I am struggling. I know I have said all this before. I know it is difficult for me to let my guard down and let people in, that it is equally hard for me to feel worthy of or safe with letting others see or carry any of my pain. I know that it is my normal to feel like this in the winter when I’m so sick and not even able to go out for errands, as my already small life shrinks further. 

But I also know that if I can’t do it for myself, my children, nesting partner, and beloved connections do not deserve to be solely taxed by my emotional luggage when I’m unable to carry it on my own anymore. 

That means learning to feel more safe with vulnerability, I think…or something like that. It means…It means continuing to dismantle the internalized ableism in my head that tells me that I am not worthy of life or love if I am not able to be productive. It means pushing myself to keep struggling at growing and being even when I want to curl up in a ball forever. 

It means I deserve to live. 

It means you do too. 

Poverty Math

Talking about this gives me anxiety but being poor is not a shameful state, it’s not a moral weakness, it’s not an indication of personal failure…so I am going to talk about it anyway. 
My brain is caught in a loop right now, 60% percent running life numbers that don’t quite add up. This started this time because I have another infected tooth, right now during the holidays. So it goes like this…

I need this tooth pulled, which will cost me minimum 100 dollars. We will be able to pay for that next pay day, in two weeks. Also there is something wrong with my ear, it’s hurt for weeks, there is swelling, maybe fluid, it may be another sebaceous abscess. My immune system is so tanked these days, I get other secondary illnesses more easily. I need to go to the doctor for that as well. If I go to the er I will need an extra 20 for antibiotics for that…I’d probably need another 100 to be able to go to urgent care instead, for copays. 

Until then I’m just gonna have to take to much ibuprofen and hope I’m not damaging my liver irreparably. 

Spending money on medical stuff in midnovember will push back holiday shopping for the kids until the mid December paycheck and limit is to 150-200 spending for 5 children. Ahhhhhh 

I have three pending commissions, that will be another 150-200 dollars. Will we have the money for groceries next week? It’s gonna be another tight week. If can I can make 2-6 more commissions by Xmas it will help us with groceries and allow us to buy a small something for each one of the kids. That will exhaust me but we will survive. I have been having difficulty writing often enough so that is a missed payment opportunity. I wish my body would just give me a break. I need to be able to do both. Milton is writing a ton, but he never gets paid as often as I do for it, no matter how beautiful and powerful his writing is. If only I could make sure that would happen. Is that what we really need to get by? I better do the math again. 

We will have to wait to go to the dentist for two weeks…

…Around and around I go. 

We work hard to take care of our family with the limitations and resources we have but it never seems enough. It can be deeply exhausting, frustrating, and hopeless feeling. We keep going and we always make it, though to often it is just barely so. One way or another my brain has been semi permanently turned into a bad math hamster, rerunning and rerunning those numbers. I’m always hoping we missed something that will help, that will make a lasting difference to our well being. Sometimes that even happens, sometimes we find something, make an opportunity happen that helps. 
Sometimes. 
Fingers crossed

That Thing Where We are Expected to Suffer in Inspirational Silence

There is an attitude in our dominant colonizer culture that struggling in silence is both a sign of moral superiority and open suffering is either embarassing or infuriating for those viewing and consuming that pain. This no doubt serves to weaken and divide people, communicate to them/us how little value their/our lives hold for those that would judge that perceived worth. 

If I(and others) suffer in socially accepted and enforced silence* I’m told that I am sooo brave just for living, that they couldn’t fathom living my life which they perceive as terrible beyond measure,  then fundamentally patted dismissively and sent on my way to continue not bothering them with my hardships. 

If i have the temerity to speak up for myself or others, if I have the audacity to name my pains and pressures, I am called a complainer, faker, overly sensitive, mean, fanatical, angry, dramatic, or a liar. All labels meant to take away my value, to render my feelings and humanity meaningless and empty. 

This process is even more dangerous, insidious, and pervasive for IBPOC who are less likely to be believed, empathized with, supported,  or given the benefit of the doubt by white people. Black women and enbies particularly carry intersections of oppression that leaves them most vulnerable to this slow social death in “nice” comfortable middle America. 

My whiteness, my ability to speak in a way socially acceptable to middle-class white America, and my relative stability all protect me from broader and larger social violence no matter what other ways I am harmed by my culture and my people. That is not anything that I can or should ignore. I have much relative and literal privilege and protection.

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Even with those protections, if I am silent I am a sweet nonthreatening paragon of virtue dismissed and held as example to guilt and control others. 
If I speak the shape of what harms me, speak my reality, I am an embarrassment, something to be avoided and ignored, something to be shamed, blamed, and silenced. 

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What does it say about our culture that we have so little ability to sincerely empathize with people who have experienced different things than us? What does it say about us that we would rather ignore those around us that are hurt in different ways than we are or were, than acknowledge that we are part of that harm, or that it indeed exists at all? What does it say about us that we protect abusers and ignore the abused?*

It’s been said that existing is a radical act when society wants to peel you away from the world. I think speaking in the face of that crushing pressure is radical as well, even when that speaking is to simply say, this shit is terrible, I’m tired, I’m hurting, I’m not sure I can take this anymore. It matters. You matter. Your life and feelings matter. 

Today I am struggling with financial anxiety, deep painful and abiding dysphoria, physical pain and fatigue, acute asthma, months of autistic burnout,  executive dysfunction that makes everything ten times more complex or impossible, depression, anxiety, intrusive thoughts, and isolation. I refuse to carry shame for saying that outloud. 

I am a person not an inspirational video, you are too. 
Name your pain, struggle, your despair. 

Taste the shape of it without shame.
Share here if you feel comfortable

You are allowed to live, not just exist for others benefit, for others sense of self. 

Please also support, pay, and share writers, activists, and articles that have inspired you to be less ashamed or helped you feel less broken if you would like. Let’s give credit where it is due, spread some of that empowerment around. 

*Rhizome speaks often and with great artistry about the social pressures applied to oppressed people, especially multiply oppressed IBPOC in both wider society and numerous superficially socially liberal microcommunities, to keep them quiet and unobtrusive to the majority. I strongly suggest you check out X’s body of work. 

*Michon created the term abuse culture to describe this phenomenon, it is quite apt. Michon is involved in multiple endeavors to dismantle abuse culture including Cuil Press  and Postmodern Woman. Michon is doing important work that you should definitely check out. 

If you learn something or appreciate their work (and other IBPOC writers, thinkers, activists, and advocates) share resources and funds with them.