Autism Acceptance Day Self-care Checklist

Today is probably going to be stressful for a lot of autistic people. Misinformation, hateful A$, misplaced sympathy and offensive opinions are going to be all over the place, all day long. Especially if you’ll be spending a lot of time on social media. Here are some reminders for myself and anyone else needing care today. ♥

  1. Take regular breaks. Spending long periods of time reading or participating in the Awareness/Acceptance discussion is hard on you, emotionally and physically. Set a timer to go off in regular intervals as a signal to do something else for a bit.
  2. Be happy. Have something you love waiting for you during a break. Favorite tv show, favorite song, favorite cat, etc.
  3. Stretch. You might be really tense without even noticing. Stretch those muscles!
  4. Watch this video of a sloth taking a bath.
  5. Stim. You won’t need reminded but how about a reminder that stimming is fantastic?
  6. Drink water. Have you had enough water today? Has anyone? Ever? Probably not.
  7. Browse #ActuallyAutistic. Anywhere, really. Twitter, Tumblr, Instagram, Facebook, WordPress. If you’re prone to venturing off into #autism land (like me), it might be good to get back and remind yourself that you’re not alone.
  8. Take a selfie. You look really good today.
  9. Listen to the rain. It’s so soothing…and sleepy. (9.5 Take a nap?)
  10. Eat regularlyNeed some low spoons food? 

 

p.s. the link preview picture is not my dog. Unfortunately. 😦

Home for the Holidays: the problem with getting what you need

The hardest part of my trip back to Kentucky for Christmas was not the airport or constantly changing plans or the obliteration of my routines (not that they were exactly easy), it was telling my family about my needs in a way I had never done when I lived there.

I used to go along with whatever was happening and just deal with the consequences. Sometimes I sat in the corner with headphones on the entire time, sometimes I ran from people so I could meltdown in private and on occasion, I enjoyed the company of my family. This year, Jesse and I explained spoons and downtime and stimming and how my needs have not changed in the last two years but how we deal with them has.

Everyone was absolutely wonderful about it. Rooms were made off limits for me when the house was packed, people were told to be quiet or leave when I became overwhelmed, they were extra careful and communicative when driving me places, restaurants were chosen with noise level and space in mind and no one touched me without asking. Not a single person made me feel guilty or acted like it was anything out of the ordinary. Their unconditional acceptance of my differences was the same as it’s always been, only made more obvious by bringing it out into the open.

Here’s the hard part: their acceptance surpassed my own. I felt crushed under the guilt of my selfishness the entire trip. I felt like I was dictating every moment of our holiday and I still can’t clearly recall if that’s an exaggeration or not. I can’t decide if this feeling is worse than not being accommodated in the first place. It might not be healthy to prefer being ignored to being accepted but I’m so tired of the self-loathing that pops up when people are good to me. It seems excessively unfair.

People have not always been good to me. I didn’t grow up with the family I have now, I married into it. Except for my mother, who has gone to great lengths to learn about me as an adult and improve the way we communicate, I don’t speak to anyone from my past. Even though things have changed, I have 20+ years of hurtful words and actions ingrained into my psyche. It takes time to undo that kind of damage. It takes exposure to acceptance and integration of support into every day life. I know that and sometimes I even believe it.

I used to think that someday I would get completely better, cured of the internalized ableism and effects of trauma that plague me with doubt and self-loathing. I would be a Well-adjusted Autistic Adult, confident and unapologetic in my need for support. I don’t think that’s true anymore. I think I’m probably always going to deal with these feelings in some instances. It’s going to get easier, though. It already has.

I came home from our holiday and took care of myself. I slept for 12 hours at a time, didn’t leave the apartment for 4 days, binge watched The Mysteries of Laura on Netflix (it’s so good, you should watch it) and did not tackle my very long post vacation to-do list. I still had twinges of guilt while my unpacked suitcases looked at me from their spot in the dusty corner of my bedroom but I ignored it and took my dinner of peanut butter and bananas back to the couch. ♥

Reporting from beneath the surface: an effort to explain burnout while experiencing it

You know the feeling you get when you duck under the water during a bath? Nose held, eyes closed, every noise outside the water feels exaggerated, you’re acutely aware of how the water feels on your skin. That’s how I feel right now. My thoughts are narrowed down to immediate sensations and I can’t spare energy for anything outside the steam surrounding me. Burnout.

Last week my mom was in town and my internship required triple the effort it usually does. It was wonderful at the time. I love spending time with my mom and I host a podcast for my internship, which I enjoy doing. But I borrowed a lot of spoons to get through that. Like, a ton of spoons, a month of spoons. I kept running out.

I didn’t sleep well, I had a shutdown, and then a meltdown, plans changed constantly, I did several new things and navigating it all took enormous effort. A week like that would be difficult for anyone and would require a few days of rest afterword. But I could be dealing with the effects for weeks. We could be dealing with the effects for weeks. I have to keep remembering that.

Burnout is hard to describe, especially when looking at it head on. I didn’t use to be able to recognize it. I still can’t sometimes. Identifying how I feel isn’t exactly easy at the best of times. Jesse warns me and reminds me. She started preparing before my mom even got here. I think she sees it as an impending storm but for me it’s like a fog creeping in slowly, masking everything and turning the landscape into a dull, dense gray.  You hardly notice until it’s all settled in.

Once I’m in full-on burnout mode my social translation skills deteriorate and I start losing track of time. I stare at people when they’re talking instead of smiling and nodding. I just forget to do it. I forget about eating. The only thing I’ve had to eat in the last 12 hours is chex mix. I’m not very sweet because that is, in fact, something I learned to do and not something I am naturally. I’m more sensitive to sound, smells, sensations. Breaks in routine that I am usually able to roll with are showstoppers. I cried because Jesse got the wrong kind of soup at the grocery store yesterday. (I’m still a little upset about it tbh.)

 I don’t want to talk very much, I don’t want to be touched at all, I zone out a lot. I want to stim constantly. I don’t think too deeply about things. I don’t feel unhappy. Actually, I feel pretty good about life in general, it’s just a dulled kind of feeling.

I do hate that burnout adversely affects Jesse and I hate that I don’t even notice until she tells me. I have a script for reassuring her when she wants attention during burnout. It has taken a long time for me to consistently remember it and recognize her prompting me for it. I think I’m getting better at it, though.

I don’t know how everyone else experiences burnout but to be honest, it feels like a relief sometimes. Some parts of it are hard, some parts of being autistic are always hard, some parts of being a human are always hard. But in general, not being able to muster up the give-a-shit to pass as neurotypical is a relief.

I don’t know how long this will last. I’ve never paid attention to the time frame. I used to push through it, before I had words to describe it and a community who understood. I used to feel broken, wrong and dysfunctional. Now I know that this is just a natural part of my life and that’s okay.

I get through it. I use my crash closet often; a soft, dark, quiet place to land when the world is overwhelming. I rest without guilt. I say no to interaction and socialization regardless of consequences. I do what feels natural. I take lots of baths, slipping below the surface and keeping the world at bay, outside the steam, outside the room, outside the building, until I feel like coming up for air.

Read about Jesse’s process of dealing with burnout here.

The illusion of fairness

I had a professor once tell me that marriage isn’t 50/50, it’s 60/40—a constant back-and-forth of one partner needing more. I can’t remember why I was getting one-on-one relationship advice from my advanced personal selling instructor but apparently I did. I was 21 at the time, 2 years into my relationship with Jesse, and I didn’t agree with him. I always strived for things to be fair between us. If she worked all day, I needed to make dinner. If she did a load of laundry, I should do the next one. If only one of us was working, the other one did everything at home. When this impossible balance of fairness was disrupted, I either felt bad about myself or angry with Jesse.

I came to the conclusion that this is what a relationship should look like by way of a few different perspectives. By that time in my life, my parents had been divorced and remarried six times collectively. I knew plenty about relationships. One partner always seemed to do more, was underappreciated and it was always the woman. Either my mom was up at 5 a.m. making breakfast for her husband before she went to work a 12 hour shift as a nurse or my stepmom was at home with all of their kids while my dad was out playing music every weekend. I saw these problems, I listened to the woes of all the mothers in my life and I marked “fairness” down in the “how to be in a relationship” file.

It’s been said that autistic people are very black-and-white minded and I’ve found this to be mostly true about myself. Once I know a thing, I generally don’t question it anymore. I knew that relationships had to be fair, I shouldn’t take my partner for granted and I shouldn’t be a doormat and that was that. These rules had no nuance, no room to bend or evolve so they eventually broke. But I saw every argument about responsibility within our relationship as a testament to our failure to maintain a 50/50 balance. I was seeing a micro view of our life together, as bits and pieces that we had to fit together to achieve a completed whole. If we struck the right balance, if we settled into the right routine, then we would be perfect.

It took a ridiculously long time for this to change. It actually didn’t happen until I started accepting that I needed accommodations and it wasn’t until I recognized my own limitations that I started accommodating Jesse’s, as well. We started using the spoon theory and practicing self-care and we really put the brakes on tending to one another’s needs intuitively because that had been nothing but a disaster for half a decade. Learning to take care of ourselves really taught us to respectfully care for one another.

Once I acknowledged that we’re human beings with needs and emotions that refuse to be regulated and divvied up at the most appropriate times, I started dismantling this ridiculous notion of fairness that I had held onto for so long. When I was growing up I wasn’t seeing unfairness, I was seeing inequality. My mom or stepmom(s) were consistently doing more for their homes and their relationships than their partners and that consideration was never returned.

Relationships really are 60/40. There are times, days, weeks or months even, that Jesse needs more from me than I need from her. She suffers from depression and sometimes I have to take on the bulk of managing our lives. And there are times, during burnouts or meltdowns or periods of poor executive functioning, that I need her to shoulder our shared responsibilities. There’s no running tab or turn-taking because that’s unrealistic and inspires stress inside our home. Sometimes we both need 60 from the other and we just don’t have it. It’s during these times that we put all of our energy into taking care of ourselves as best we can and worry about everything else later. Sometimes we both only need 40 from the other and these times are some of our most productive. And sometimes it’s not even 60/40, it’s 70/30 or 90/10 (This one was hard to understand because I was trying to turn the 60/40 combination into a new Very Strict Rule).

I’ve started to take a more macro view and not see our life as being made up of tiny parts that follow a schematic. Our relationship has its own balance and rhythm as we shift together to make each other as happy as possible. There’s no right answer and nothing is fair and that’s okay.

Read Jesse’s side: The 50/50 Fairytale

On passing, affection and relationship negotiations

By nature, I am not very physically or verbally demonstrative. I am a quiet person, content to be left alone most of the time. I’m not shy but I have things to do, things to think about, that do not include other people. I’m not affectionate because I don’t care for it and because of my sensory issues. This has not been well received by…anyone in my life at any point. Because of that I spent a lot of time instinctively and intentionally creating methods for interacting with people. I took drama classes throughout my teens and my minor in college was sales (even though I have never had any intention of selling anything.) These things taught me how to act like someone else. Drama taught me to be confident and entertaining. Sales taught me professional body language and speech patterns, how to make small talk and get people to open up to you. Those sales classes were like cheat codes for people and without knowing it I was essentially taking Passing 101.

So, for a long time I have been trying to mask all of my characteristics and replace them with ones that people seem to like. I was still seen as a weird person but not that weird. You know what I’m talking about. I felt like I was constantly on that edge, waiting to slip up and fall over. I never got close enough to anyone to really explore who I was with another person, though. Until Jesse.

I liked Jesse the moment I met her. I never looked for specific traits in people, I never really looked for people period, but she seemed perfect. She was genuine in a way that I admired and envied, she was loyal and kind but not sweet or demure, she was unabashedly silly, unafraid of admitting mistakes or learning something new. I found her fascinating, endearing and beautiful. I fell in love quickly but I was terrified that she would soon know who I really was, not sweet, outgoing and personable but quiet, odd and particular about most things. I attempted to explain it once very early on. We stayed up all night on the steps outside her dorm while I tried to articulate everything I thought was wrong with me. I don’t remember everything we said that night but I know I felt less afraid of her running away from me after that.

She didn’t run away. She told me that she loved me on November 4, 2007 and it’s been a fact of my life ever since. We say ‘I love you’ several times a day but it’s more of a salutation than a statement. I do not need a reminder of her love. She said it, I believed her, the end. The fact that Jesse needs reassurance of my reciprocation has baffled me for years. I was very clear about my feelings for her and, to me, unless I indicate a change in how I feel, she should already know. That’s not how it works for her, apparently.

For the first seven years of our relationship Jesse’s entire family rotated through our home. I missed privacy, alone time and quiet but 1) I couldn’t actually kick out her siblings and childhood friends and 2) I thought that having all of the people Jesse loved most in the world under one roof would somehow make up for the fact that I’m lacking in the affection and attention department. I found that this is also not how it works for her.

During those years Jesse and I struggled to speak the same language when it came to feelings. I couldn’t understand why she needed so much attention from me when, at times, we literally lived with seven of her best friends. I was confused about why she constantly wanted to kiss or touch me, wanted to sleep pressed close together, wanted to sit nearly on top of one another. How could she miss me after a two hour class? Why was she upset because I didn’t miss her after one day of work? I was confused every time she told me she was lonely in a house full of people, confused and angry and broken for not being able to fix it. I felt sad that she didn’t trust that I loved her and guilty because I didn’t know how to make my feelings any more apparent. I was there every day, I shared my life with her and we did everything together. I wouldn’t do that with someone I didn’t love.

We continuously fought and argued and made resolutions. As her partner, it was my job to give her the affection that she needed. It didn’t count if I didn’t appear to enjoy it. It didn’t count if she had to tell me what to do. How could I know what she wanted and give it to her without appearing confused or put off? Neither of us knew. Each time we tried it ended in Jesse’s tears and my promise to figure it out and to do better next time.

Eventually, Jesse just took what she wanted while being angry with me for not doing it right in the first place. She held on to me while I put my arms around her rigidly, she maneuvered me into the correct spooning position, she assaulted me with kisses seemingly at random. There are times when physical contact is painful for me. When Jesse’s forced affection hurt and I jerked away from her, she held on tighter and told me to suck it up. The rare times I sought out physical affection were met with hostility because, to Jesse, it was proof that I was capable but unwilling when she needed it.

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“Stop pulling away and hold still!” – 2009

This constant, almost daily conflict was emotionally taxing. We needed to change something but didn’t know what to do. We considered couples counseling, we read books, we talked and talked and talked but we were just going in circles. After my autism diagnosis, we began to feel around the edges of learning to compromise and give mutual respect but that’s easier said than done. We both knew intellectually that my feelings about affection, my tendencies toward space and quiet, were valid and even valuable. Emotionally, we had both been on the path to molding me for too long. There were no longer fights but Jesse was still hurt and lonely and I still felt guilty.

A little over a year ago I finally summoned the courage and self-respect to give Jesse a firm no when she came to me for affection. It was perhaps not the best time because we had just moved 800 miles from home and I was the only person she knew in the state. And it felt awful, like I had given up trying to be what she needed. Still, she acquiesced and that was that.

We started putting together a set of guidelines to follow. Jesse wouldn’t seek physical comfort out of boredom or touch me without asking first. I would be more upfront about my specific reasons for not wanting affection and be more flexible than “yes” or “no.” Sometimes a firm, stationary touch is fine but light rubbing is irritating. Sometimes a few minutes of cuddling is fine, even welcome, but years of giving Jesse an inch and her taking a mile made me weary of being trapped until she felt like being done or dealing with her sulking if I pulled away before she was ready. Sometimes I just want to continue reading and she can do whatever she likes while that happens as long as she’s quiet. Sometimes it’s just no and that’s okay. Very infrequently, I still feel guilty and she still feels hurt, like a phantom emotion, but we express those feelings and work through it.

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“Can I squeeze your face and kiss you?” – 2014

In addition to actual physical compromises, we began working on resolving the emotional deficit this conflict had created. For a long time, Jesse only received and gave love through physical affection while I did so through the proof of our lives together. Now I explain the ways in which I am showing Jesse that I love her that I once thought obvious. Favorite foods cooked, baths run after long days, all the little things I do that soothe her when she’s homesick, I verbalize why I’m doing these things as I do them. It helps remind Jesse that I still find her fascinating, endearing and beautiful, even as I ask her to leave me alone. I tell her that I miss her now, even when I don’t, as an endearment, like saying “I love you” before leaving the house. It satisfies her need for reassurance and affection and I no longer feel like a failure as a wife.

Every couple has to negotiate the way they express and receive love, we had the unfortunate opportunity to start negotiations on top of my low sense of self-worth and a lack of knowledge about neurodiversity. I am glad that I found a partner who, at her core, is unafraid to admit mistakes and learn new things because that’s why we’re still here. I’m glad that she’s willing to accept a partner who differs from who she imagined herself with. I’m sure that if she had known I was possible, she would have imagined me to begin with.

I want to be clear that I’m not condemning trying to pass. I am grateful that I learned to pass successfully (for the most part) because it can be essential for safety at times. There is nothing wrong with protecting yourself. There is something terribly wrong with society in that sometimes we need protection in the form of pretending to not be ourselves. I think that we are already changing the way society views and values autistic traits and through that, accommodation will not be seen as exceptional and it will not be so hard to define. I feel like Jesse and I re-invented the wheel in trying to accommodate one another’s needs and I hope that this can help someone else navigate their relationship, romantic or platonic, neurodiverse or not. ❤

Read Jesse’s account of this aspect of our relationship: On expectations, rejection and learning the language of love