#autism burnout is part of it too and also chronic pain but i think the depression is the worst

[killhimagain]

The fun thing about having chronic depression is that not only do non-disabled people think you're an overdramatic con artist but a lot of other disabled people also think that about you.

[notabled-noodle]

idk if i'm wording this right but it's kind of hard to tell what support level you are if you have multiple conditions and it doesn't seem super concrete which one someone can be.

there are definitely things i'd be considered low support needs for (speaking with mouth in full sentences mostly fine, using tone of voice and facial expressions when it helps get the point across, academically inclined, earlier development in reading/speaking, able to live alone), and that needs to be acknowledged, but there are more things that would place me as mid support (can barely understand speech, taking things literally/figure of speech issues, extremely low tolerance for sensory info and change, if anything goes wrong loses speech completely without warning, unable to be left alone in public, no eye contact or even looking in the person's general direction, absolutely awful fine motor development, constantly stimming in ways that make it obvious that i'm autistic, unable to mask, can't get a job, executive dysfunction, etc).

i think a part of this is the other stuff i have (me/cfs, adhd, mental illness), but either way it demonstrates to me that none of these are super concrete anyway. i can't really say i'm mid support because i'm mostly speaking (85% of the time now i live alone), my growing up/diagnosis experience was exactly that of lower support people, and a lot of my lower support traits are the ones people base support levels off. but i don't really relate to low support people as much either because the things they describe for their daily life are so different to me and i can't really relate because my support needs aren't low enough to count.

i guess what i'm trying to say is that when discussing support needs we need to consider the whole person? and that not everyone fits neatly into 3 boxes any more than they fit into 2.

– someone who's been called 'low support' this entire time by the people who actively do the mid tier supporting

PS sorry this is so long and also sorry if i sound like i'm whining or showing my low support ignorance or something /gen

yeah, I get what you mean. I’ll probably have higher support needs as I age, and as my chronic illnesses become harder to manage. not just because of my chronic illness, but because I also find my autism harder to manage when my body is in pain. trauma plays a huge part in my support needs as well.

things are a lot more complicated than people think. the support needs labels don’t work for absolutely everyone, and there are definitely people who fall between the cracks. there are many people who don’t get the support they need, because even some people who work with autism don’t fully understand the range of support needs a person may have.

it also should be acknowledged that “mid support needs” is a huge category. it covers people who can do “complex” tasks, but none of the “basic” ones, but it also covers people who need a medium amount of support with all kinds of tasks. those two experiences are very different from each other, and those people will have very different perspectives to each other.

the other thing is that support needs can and will change over a person’s lifetime. extreme cases of autistic burnout can irreversibly increase a person’s support needs, making them go from low support to mid-high support. those are experiences that matter too.

I guess the TLDR is that people do need to remember that the autistic community is diverse, and has a diverse range of needs and experiences

[abbynormaled]

The existential crises of difference, privilege, and forks

My wife and I visited Thailand many years ago, shortly after we got married. Her parents lived there, part of the U.S. Embassy staff, and so we were able to stay for 3 weeks and see far more of the country than most. 

Bangkok was amazing: so full of people, and smells, and new food, and elephants. It was fabulous. Everything a young person might want in their first trip out of the country.

After a long day at Chatuchak, Bangkok’s enormous weekend market, we were overwhelmed by it all. We were exhausted, not just physically, but psychically. We stopped on the way back to eat and recharge.

At a KFC.

Now, I’m not one to be timid in eating, especially when I get a chance to travel. But we had had too much by that point. Our system couldn’t take any more novelty. KFC was exactly what we needed — a refreshing taste of the familiar — and by the time we were done savoring the Colonel’s 7 herbs & spices, we had the internal wherewithal to continue on exploring and enjoying the rest of the day

This is the fork theory of difference, which is the opposite of having privilege.

You may already be familiar with Spoon Theory: the idea that people with chronic illnesses have a finite amount of energy to do the daily things. Sure, everyone has a finite amount of energy, but for people suffering from chronic pain, mental distress, or physiologically-induced fatigue, it’s so much more.

Even simple acts, such as folding the laundry, take up extra effort, or spoons. Had to go grocery shopping in person? That’s 2 spoons. 

Part of the value of this metaphor is that (too often) a friend of the person will try to encourage them to get out, to do something. “It’s just one evening of drinks.” What the friend doesn’t know is how many spoons that person already expended during the day on just ordinary things.

It’s helpful for most people, those who don’t have to deal with these very literal pains and stressors, to understand how exhausting it is just being. 

Those of us who don’t experience the pain and fatigue of chronic illness don’t worry about spending spoons on the little things in the same way. 

We get to keep that energy and use it for other things in our lives: social interactions, moving ahead in our career, financial planning, helping kids with homework, etc. 

Having extra resources, like physical and psychic energy, to expend on moving forward and getting ahead is (in at least one respect) the essence of privilege.

Autism and exhaustion

My experience with not having enough energy to use the laundromat had me thinking about the ways in which a version of the spoon theory could help me (and others) understand the small but accretative energy costs that come with being autistic in an NT world (especially when one works to “fit in” as is the case in many undiagnosed autistic women and girls).

I feel it is important to point out that autism is not a disease or disability in itself — if that assertion confuses you, please Google neurodiversity.

Let me share a passage from my novel-in-progress about what it feels like to be autistic:

- - - - - -

When they think about an autistic person, most NT’s (that’s neurotypicals, or non-autistics) think about people who get over-stimulated easily, who don’t like to be touched, and who say socially inappropriate things without realizing it. And that is true for a lot of people on the spectrum. But it is a spectrum, and just like the light spectrum there are all different hues of autism spectrum (AS) and some are more difficult to perceive than others.

Think of it this way: the “typical” autistic person (as portrayed in the media) generally has trouble understanding social norms and behaviors (like unspoken rules, nonverbal communication, and similar). Those social interactions might be like hearing someone sing a song in a foreign language: you can participate in the singing, but you’re not really sure what’s going on.

For me, and I’m what they used to call an Aspie (short for Asperger’s), it’s not nearly that severe. It’s more like hearing a song in your language but the music is really loud or distorted or it’s Bob Dylan and you can’t make out all the words. You get the basic idea of what’s going on in the song most of the time from other context clues (like the tempo and whatnot), but the specific details can be lost on you. And sometimes those context clues aren’t accurate, and you end up looking like a fool because you thought “Gangster’s Paradise” was an inspirational song.

I’ve learned over the years to do the equivalent of looking the lyrics up on the Internet, which is to say that I’ve learned to act neurotypical very well.

In fact, most people have no idea I’m not an NT. The few people I’ve told about my autism are surprised (some even wanted to argue that I don’t act autistic enough to qualify). The truth is that I’m very smart, I have a great imagination and strong language skills, and I enjoy having fun like the next person. Yes, I prefer quieter activities (loud ones are tolerable, but wear me out). Yes, I sometimes don’t behave as expected in stressful or unusual situations. But I do enjoy being touched for the most part — except when someone attractive that I’m not comfortable around yet touches me, in which case I enjoy the physical part of it but get stressed out about how I’m supposed to react.

So, being on the spectrum doesn’t hurt or anything, but it is stressful and tiring from all the work you have to do to fit in. It’s as though every encounter with another person is a puzzle: you can enjoy puzzles, but having to do them ALL THE TIME gets exhausting. It does help when you have the same kinds of interactions again and again, because you know the pattern.

- - - - - - 

Solving the puzzle that is neurotypical social interactions over and over and over again leads to emotional and physical exhaustion: autism fatigue. 

From Neurology Advisor:

Although compensating for their difficulties may help people with ASD connect with others, get jobs, and successfully navigate social situations, accumulating research suggests it can also lead to exhaustion, burnout, anxiety, and depression.

Forks

Forks are a way to account for the amount of social energy an autistic person has to expend throughout the day. As I mentioned at the outset, this really works the same way as spoons, but I thought another utensil was appropriate because:

Spoons are about physical energy. Forks are about psychic energy.

The spoon theory is currently used to describe the difficulty in dealing with disabilities (and I don’t want to appropriate), and

Many autistic people may co-present with a disability, making it difficult for them to cope, as they juggle both spoons and forks.

The basic concept is this: an autistic person has a finite amount of energy (emotional, psychic, energetic, whatever) at the start of a day for working out the social puzzles. Even with activities they love and enjoy, it takes energy.

Social interactions take effort.

The energy a person has is their number of “forks.” There’s only a certain number of them to start with, and different interactions use up different numbers of forks.

Greeting coworkers you’re familiar with at a job you’re used to may only use 1 fork.

Returning an item at the store takes several forks.

Networking events where lots of people are hugging (but not everyone) will probably use up all your forks.

Even activities that you love use up forks. I am enthusiastically absorbed by improv: I love to perform it, to practice it, to teach it, to coach it. But it uses forks. Longer performances use more forks, and classes even more still. A beginner class, which is one of my favorite things in the world, will wipe me flat out.

Once your forks are gone, your ability to “do people things” drops to zero. It’s not that, given an extreme need an autistic person can’t manage to say hello, but it does require pretty significant draw of willpower.

When you’re low on forks, even using the laundromat can be too much.

The forks will come back, with time and an environment where the autistic person can recharge, but in the meantime it’s vital to be aware that we’re not going to act “normally” most likely.

Some of my personal characteristics that manifest when I’m out of forks include:

a flat affect: no emotion in my voice or face

Silence in a conversation

Becoming easily distracted by random tangents from a conversation (this is my normal brain behavior, and it takes effort for me to follow conversations linearly)

Easily annoyed or put out when I haven’t communicated clearly.

Because autistic people engage in non-normative social behavior — especially when they’re out of forks — it’s easy to classify autism as a disability. 

It’s not a disability. It’s a lack of privilege from being outside the cultural expectation that people think and behave IN THIS WAY, and not any other.

It’s the conflict between neurotypical and autistic expectations of normative behavior that causes much of the “dysfunction.” To be sure, there are many people further along the spectrum who face additional hurdles and difficulties, but it’s important to understand that the root issue is this friction between what’s considered normative and where autistic people are.

Setting the table: Beyond Autism

This “foreigner fatigue” — being exhausted by the constant work of moving in a world made for different people — extends to other marginalized groups.

For me, a breakthrough occurred in my coming out as transgender. I went from “being” a white, cis-het male to a trans woman. And because I changed my presentation so suddenly (thanks, autistic mind!), the differences were pretty stark.

Where before I would pop down to the local Food Lion to pick up an item or two for dinner, I now have to balance competing interests:

On the one hand, the Food Lion makes me nervous for my safety. I get constant glares and people muttering under their breath, and the parking lot is dark.

On the other hand, the nearest grocery store that I feel comfortable in is 7 miles further away.

In and of itself, it’s a relatively small, not overwhelming choice to have to make. 

Once.

But these kinds of choices don’t just happen every once in a while. They’re constant. Am I in a restaurant where I feel comfortable using the bathroom? If not, how long will it before before I can find one? When sending out proposals to corporate clients to do improv training, do I pay to have someone accompany me when I know the audience will be a group of all male sales people? If I get into a traffic accident, should I stay in my car with the doors locked until the police arrive?

I realize this kind of thinking isn’t news to anyone who isn’t a cis-het white man. But bear with me a moment.

The worry about safety was something I was expecting. The exhaustion was not.

On top of the exhaustion was the simple opportunity costs: every one of these choices preempted something else I could be doing: finishing up work, coming up with new ideas for the theater, spending time with my kids, etc.

I had lost those opportunities by virtue of no longer operating within the bounds of the normative expectations. I had lost privilege.

A Way to Think About Privilege

This new way of thinking about privilege gave me insight into how to respond to people who reject privilege because they “also work hard” and “have setbacks”.  But one very basic way to understand privilege is to see it as having time opportunity.

While young girls are learning how to dress just so, in order to walk the fine line between too masculine (butch, which could get you beaten up) and too sexual (which could get your rapist acquitted), young boys are learning how to replace an alternator.

While young black boys are learning how to dress and move and behave inside almost any retail store so as to not get accused of shoplifting, young white boys are learning financial literacy.

While professional women are expending time and energy on trying to be heard in the office without being “aggressive,” their male counterparts are making moves to get ahead.

I think you get it.

Opportunity costs driven by the effort required to exist within the normative expectations of a white, heterosexual, patriarchal culture mean extra work to keep up. And more fatigue.

Forks that get used up.

And, yes, everyone has setbacks, obstacles, and problems. But when you’re already using your forks just to exist, it’s that much harder to be resilient. Much less to get ahead.

That some groups don’t have to expend forks as part of being who they are is privilege.

Intersectionality

But for many people, forks get used up in multiple ways simultaneously. This is intersectionality.

Any parent of more than one child will probably tell you that having your second child is more than twice as much work as having one. In addition to the regular care and feeding of the second child, you now have the compounding work of dealing with the interactions between the two.

In much the same way, anyone who has to deal with multiple areas of being “foreign” to the normative expectations has compounding difficulty in maintaining their supply of forks. 

Fewer forks = fewer opportunities.

Mine is a simple example. As an autistic person, I have to expend energy to be seen as a neurotypical (and, in case you’re wondering why I do, try getting a job or landing a contract or making friends when you don’t follow social rules). As a transgender person, I have to expend energy to stay safe, to deal with my kid’s  school’s 1990′s mentality about what having 2 parents looks like, etc.

As an autistic transgender person, I am now also having to learn a whole new set of social customs, expectations, cues, responses, and more in order to “fit in” as a woman, not to mention the difficulty of engaging with people who treat me poorly, refuse to recognize my validity, and more.

It’s little wonder I’m exhausted all the time. 

Now think about the incredible amount of work that it takes for a Black, poor, transgender woman to make her way, and you can see how ridiculous the notion of “just work harder” and “make better choices” is. Good choices are easier when you’re not fatigued out of your mind all the time, and working harder is only possible when you have time and space to do so.

Making Space, Making Forks

You hear people talk all the time about how we’re all going through something, whether it’s visible or invisible. And the biggest thing we can do for each other is to make space, so that it’s easier for us all to get around the way that works best for us.

And yet there’s so much anger and pushback against doing the little things to create space. That it’s too much work to recognize that there is no such thing as the EXEMPLARY, TYPICAL HUMAN, one who has no touch of chronic disease, or ADHD, or autism, or BPD, or depression, or anxiety, or isn’t a white, cis-het male. Ultimately, making space isn’t that hard. All it takes is a moment of consideration and listening. Most accommodations aren’t hard to implement.

For example, some things you can do to make space for autistic people (at least, those like me) include:

Leaving a bit of extra time in conversations for the autistic person to chime in. We often feel stressed when encouraged to “jump in.”

Don’t force an autistic person to address your feelings immediately when something has happened. This can be as simple as a spilling a drink on them, or having said something that hurts their feelings. They’re focused on processing the immediate issue first, internally. They’ll need a moment (or several) before they can address you.

Surprise social situations can be very stressful. Be thoughtful before peer-pressuring an autistic person to do something, even “fun” things like dancing or sharing a story with the group. Help them feel welcome to do so, leave space, and they’ll interact when they’re ready.

Don’t ask autistic people to “read between the lines.” If you have an expectation of them, be as explicit as possible.

Communicating complex ideas can be difficult, especially emotions and feelings, and we often feel angry (at ourselves) and frustrated when we’re not understood. Sometimes we “clam up” – which means that we’re running through the conversation in our head over and over again to try and figure out what went “wrong”. 

Several of us went out to a bar after a recent show and some very lovely audience members were there, and they were enjoying as several improvisers would tell a made-up story about the couple. They then turned to me and said, “Now you, Abby.” I demurred. I was worn out from the day and then the show. I love improv, including performing it, but it does come with a cost in forks. And I was now out of them.

Thankfully, a beautiful friend understood what was going on for me and made a very simple deflection on my behalf. By saying with grace and humor, “We’ve already heard several versions of what didn’t happen, I think it’s time you told us what did!” she effectively shielded me from having to use up my last fork explaining why I was too tired. 

It meant so much to me, and I was able to enjoy the rest of the evening.

A Fork-gone Conclusion

The more space we have to interact as ourselves — that is, not conforming to one very specific, very arbitrary understanding of normative behavior — the more forks we can hold on to, and the more energy we have to be in and a part of the world, our communities, and our families.

[autismus-obscurus]

AutistAgent Dev undercover

Hey guys! I know my blog has been dead for a while. My internship in a psychiatric clinic started and I have to study for upcoming exams so I don’t really have time to blog much. But I’d like to write a little summary of the first two weeks to recuperate a bit and get my thoughts into order. To not spam your dash, the rest is under the cut.

SO, my internship is in a psychiatric clinic. To be more precise it’s part of a big institution that has everything from open and closed stations, to living spaces for elderly mentally ill people and heavily disabled peeps whodon’t have anyone else. I work at an outpost, the day clinic, meaning people come there from Monday to Friday from 8am to 4am. They’re not stable enough for a normal psychiatrist to work with, but also not so bad off they’d need to stay several weeks at the clinic. The “regular” time in the day clinic is six weeks, but it will be extended if necessary. The main buildings are on the other side of town, which is around 700m by foot, and we walk back and forth once, most of the time at least twice a day. I have never been so fit in my life. (Jk, but it’s been a while since I worked out regularly.) I think what most people don’t realize is how normal everyone looks. Even on the stations it doesn’t really look like a “mental hospital”. Sure, I haven’t seen the closed stations yet and my next intership might be a bit harder. But over here, those are all quite nice people who hit hard times. We have a lot of them with chronic pain, with depression and anxiety. At least half of them are sick because of their environment being shitty to them. Of the fifteen patients, five are women who got burnout because their partners manipulated them into doing everything for them. Trying to change their approach and not let themselves get pushed around is a big challenge and super draining. We have some that hit a low because of trauma, because of a loved one dying. It’s harsh, and it’s sad. The first few days were horrid. I slept really badly for a few days and was constantly tired. Add to that the stress of a new environment and lot of people around, I was a mess. On the third day I stared crying after a group because I picked up the emptions (mostly sadness) so intensely. Hyperempathy can be a bitch. I still get close to tears now and then, mostly when I’m extremely stressed because then my emotion regulation shuts down. The first few days I fled to the toilet very often to calm down. My stim pad and music helped a lot. In the second week I didn’t need it as often, but I still stim during groups, mostly by stroking the fabric of the chair I’m sitting on or wiggling my fingers. I’ve also noticed I rub my hands and arms a lot while speaking. A year ago I would have tried to suppress it, but screw that, I need to stim to survive this.

The people are really nice. The psychiatrist who is responsible for my internship is a cool dude who likes D&D and wear bow ties every day. I’ve started the mission to find out how many different bow ties he has. The number as of now is 8 and counting. None of them know autism very well so I doubt they’ll pick up on it, even though I don’t hide my stimming a whole lot. I still make eye contact, even though it’s as always pretty unstable. I have trouble focusing on a point, anywhere in the face, and all the years of training make it hard to not make eye contact. Conversations with the patients go reasonably well. I guess I really learned how to do smalltalk by now. (Pro tip: It’s always the same. I can’t tell how many times I’ve explained where I study, what I study, in which semester I am, and where I’m from and what route I take by car. Seriously.) I often accompany patients to therapies. The other therapists are super nice. A lot of the therapies benefit me as well. I like to think I wouldn’t need it unless I hit super hard times (I couldn’t either way, because then the insurance would act up and employers don’t like people with problems), but now that I’m here it’s really helpful since i get to see both sides, that of the patients and the reasoning behind it. I started drawing again, and finally got around to use pastels for the first time, for example. I bought my own pack now and will start to practise portraits so I have something to sign should a band I like give autographs on a festival. The relaxation sessions are pretty chill too, after I gave up on meditation for lack of time. I even got around to work out again. (And caught a cold, woo.) We did a small trip to a nearby city in the Netherlands, which was hella cold and also entailed me not finding shit. At least I saw a bunch of cute dogs. Surprisingly, the conversation once went to gender stuff and the toilet situation. Surprise, not actually surprised, there’s people (women, in this case) who don’t want only unisex toilets. Why? Because they don’t want any other gender, with the reasioning, hold on this is gold, the men always freak out as well when a woman comes into their bathrooms. I was mad at first but if I think about it now, it’s hilarious. The bow tie psychiatrist cleared things up, but apparently she gets very fired up about the topic every time. I didn’t start a fight like I would have in a more comfortable environment, but it wasn’t necessary, bow tie guy has our back. In the evenings I unfortunately have to study, which only recently sorta worked because I’m not totally dead when I come home. I get to study my target language a lot, since when I’m bored I usually do some vocab and I occasionally write about my day in my target language.

Now for the bad bits. What sways me the most is that I have no clear routines. In the morning we make breakfast, but since I don’t know where everything is and how many people we are and what everyone eats it’s next to impossible for me to help. In general, I sit around a lot between therapies and meetings and when the patients are eating. It makes me feel terrible. Both nurses are basically unreadable to me and have a very, uh, powerful way of going around. I suspect they think I’m hella annoying, but I think that of everyone so who knows. Also, I managed to prove I can’t make coffee or screw a coffee flask shut. Hella embarrassing, to say the least.

Some therapies are hella uncomfortable for me, and it’s a bit problematic since I can’t step out (social anxiety, also I’m not supposed to be the one with problems.) One patient is in the clinic because of panic attacks, but he’s also hella sensitive to sound, just like me, and hates being touched. In one session we were supposed to do a game where we clap hands with each other and I was honestly really relieved when he said he couldn’t do it. Another therapy session was about touching hands with each other while we walked past, and look each other in the eyes and it was honestly the most uncomfortable thing I’ve done in quite a while. The excercise is about knowing your own boundaries and i guess it makes sense (but I’m not sure what that’s good for when you can’t step out because you’re not a patient.) There’s also a billard table in the clinic as well and one patient just thrashes the balls around every time. It’s like he lets all his aggression out on the queue. You bet I flinch every time. Chill the fuck out, mate (especially since he says he’s not aggressive. Sure bro.) Food is a smaller issue. I got stamps for the cafeteria, but some stuff is just... nope. So far I’ve managed to avoid stuff I couldn’t deal with, or ate just enough to convince people I was full. Some food there is actually really good though and the clinic is literally in the same building as a small supermarket and a bakery, so it’s chill.

Overall, I’m surprised how well I deal. I know what I have to avoid now, so it’s really chill. I might actually go into therapy after all. There’s some icky stuff, but once I’m not an intern anymore I can do my own routine and organize stuff.