Hello. My name is Bix. Urban goatherd, social medium, & pop culturist. Straight, white, middle-aged, & male. Project manager at The Belmont Goats. Midlife-diagnosed #ActuallyAutistic.

Meltdowns Dispute The Social Model Of Disability

My Autism Cannot Be Defined Solely As Some Sort Of Norms Mismatch

A MAJOR THREAD of autism advocacy is the social model of disability. There do seem to be many aspects of being autistic that are limiting not because of any inherent flaw, per se, but because of a mismatch between the wiring of an autistic brain and the social and cultural structures of the society in which that brain operates.

Trust me, however, when I say that neither the absolute rager of a meltdown I had this past week nor any I’ve had in the past were the result of an autism “best understood as a difference, disabled by society’s expectations and norms rather than any medical deficit”, as Bitesize Autism Research termed the conclusions of a recent paper.

(I can only see the abstract, but I note in passing that in it the author concludes only “that we have no decisive reason to think that being autistic, in and of itself, is at odds with either thriving or personhood” and then simply says that this conclusion “chimes with” the social model of disability.)

My meltdowns, I think, come in two varieties: ones caused by sheer cognitive and/or emotional load, and ones caused by what we could term “undifferentiated emotional time”.

The former is what happened this past week when I had to get sixteen bales of hay into a ten-by-eight shed already full of disorganized supplies before the rain came. The latter is what happened several months ago when I found myself screaming at a high school student who was feeding the goats through the fence.

When I verbally tore into that high school student, I was not responding to that individual person and that discrete instance of this happening.

Instead, I was responding to the entire four years of having to deal with people feeding the goats through the fence when they weren’t supposed to. The sheer force, the violence really, of my voice perhaps was proportional to the entire history of the potential threat to my animals, but it was not at all proportional to the specific instance before me. I called this “undifferentiated emotional time” because that’s what it feels like in retrospect: like four years of past incidents were happening again, all at once, along with the present moment.

(I’m reluctant to call this a tiny kind of PTSD, but it’s a small version of what I imagine PTSD sometimes must be like for people with real trauma.)

What happened this past week was different. I had to manage the delivery of sixteen bales of hay, including letting the truck in through the drive gate while also making sure none of the animals were approaching and getting themselves underwheel (or escaping through the gate), and then determine how to get it all into the storage shed alongside the disorganized mess of supplies already in there.

Without any help, all while facing the forecast of imminent rain.

You’ll find in writings by actually autistic people some discussion of how difficult just normal, every day chores can be, mostly due to executive function issues. In some sense, you can see this as that, plus an external deadline (the rain), plus it being not just a personal responsibility but something other people needed done as well, plus the usual weight of knowing that no one had been helping me try to organize what was already in the shed.

This all resulted in anger at the weather, anger at the goats starting to get underfoot, anger at unhelpful colleagues, and anger at the supplies in the shed that were in my way. All of which meant loud and frustrated chasing goats away from where I was working, and eventually me throwing items out of the shed one after another accompanied by large amounts of cursing.

In the middle of all this, I kept updating other members of our organization via Slack messages, partly because narrating a problem sometimes can help me navigate it and partly because maybe someone had a bright idea about how to solve it.

Instead what I got was someone irritatedly proclaiming that they were not going to deal with anything I left unfinished because by the time they’d get there it would be dark, and then the same person snapping, “Go vent somewhere else.”

Let me explain something here. It’s important.

Autistic meltdowns are not “venting”. An autistic meltdown is a brain in crisis and distress.

What someone should have said to me in that moment is, “I know you’re worried about the rain coming, but: stop, put everything down, and walk away. See if that helps you come back in awhile to finish.”

These are thoughts it’s literally impossible for me to have myself in the midst of a meltdown. They need to come from outside my head.

What you don’t do is snap at me that if I don’t get it done it’s not going to get done, or call what’s happening “venting”.

Without someone trying to crowbar into my brain the idea that it would be okay to walk away, even if it was with the hope that I later could return to finish, there were only two options before me, neither of which was I especially conscious of at the time). Either the work was going to get finished but wrapped in an epic meltdown which was only getting worse because I was not walking away, or the work was going to remain unfinished but I might be able to avoid spiraling any further downward in the meltdown.

(I finished the work, continued to meltdown, and then unceremoniously announced that I was walking away from the entire nonprofit for the rest of the month.)

Meltdowns are not tantrums thrown for attention or manipulation. They aren’t “venting”. They aren’t, I’m sorry-not-sorry, simply the result of society’s expectations and norms.

They are nearly-uncontrollable storms in my brain.

When it’s an “undifferentiated emotional time” storm, I often can tell myself to walk away. Sometimes, rarely, I can even tell myself to do that before the storm actually hits. When it’s a cognitive and/or emotional load storm, I need someone outside of myself to tell me not just to walk away but that’s it’s okay to do so.

Meltdowns are one the clearest indications to me that we cannot describe autism simply and purely using the social model.

Meltdowns are not external. They are internal. They come from within my own brain. They might be prompted by external stimuli but they are not prompted by social convention.

Meltdowns are a sign of disability. My meltdowns are part of my being autistic. My autism is a medical disability, not a social one.

Email As A Disability Accommodation

What Companies, Government Agencies, & Others Need To Understand

IT DOESN’T MATTER whether you subscribe to a medical model of disability or a social one when it comes to autism. Either way, I am disabled. The easiest way to understand why, and how, is to talk about talking on the telephone.

Telephone conversations always have petrified me. To my knowledge, I never thought about or discussed it much prior to my autism diagnosis. It was just yet another part of the way neurotypical society functions that I suffered in silence. Phone conversations were just part of the world. Why would I see my difficulties with them as anything other than just one more way in which I was a fuck-up?

Of course, I’ve talked about communications difficulties before, and much of the problem comes from the processing required for real-time interaction and the fact that monotropism restricts multitasking.

Some of this is the fact that I am effectively incapable of multi-tasking. It dawned on me only recently that the reason I sometimes will interrupt someone I am talking with is because when a thought strikes me I am mentally incapable of simultaneously holding onto that thought for later andcontinuing to pay attention to what the other person is saying to me. So the thought leaps out of me while they are in mid-sentence, and I need to apologize, urge them to continue, and hope that the mere fact of me having said something out loud will be enough to bring my thought back into the conversation at a more suitable moment, like when it’s actually my turn to speak.

Telephone conversations in some ways make this worse, because at least face-to-face the other person likely has some conception of the fact that a thought has just struck you and you are waiting to be able to get to it. They also have some sense of when you are quiet because you thinking about things rather than from some sort of disinterest.

There’s an old piece about this elsewhere that nicely details many of the important parts of what makes telephone conversations so vexing for many autistic people (and has a photo illustration that’s on-point as to the sheer terror having to talk on the phone can bring), chief among them for me: being the focus of attention, the unpredictability, and its verbal nature.

These problems are especially sharp when it’s not just a routine matter. Comparatively predictable conversations such as calling to see if a store is open (although even that’s not easy for me, and I’ll mostly just hope this sort of thing is listed online somewhere) are one thing. Answering questions from the Oregon Department of Human Services about my SNAP benefits eligibility or needing to understand the options for temporary electrical service from Portland General Electric at my nonprofit project are something else entirely.

It’s even been a struggle to convince my doctors at Kaiser Permanente to use their website’s secure messaging system not just to send me information but to enable replies so that I can correspond that way. The tool is designed for communication but so far I’ve only found one doctor willing to use it that way. Despite, you know, being doctors, most of them have refused to accommodate my disability.

Were I deaf, nearly every large organization or company or agency would have a TTY line or similar accommodating method available. For some reason, despite even small organizations, companies, or agencies having access to email, text messaging, or chat programs, I can’t seem to get people to use them to accommodate my impairments.

So, this is for you, agents and representatives of private companies, government agencies, and nonprofit medical providers (as well as, you know, therapists): when I ask that we communicate via some method other than the telephone or face-to-face, it’s not because I am being difficult. It’s because the cognitive and emotional loads of those forms of communication cause me distress, and, ultimately, are unproductive.

Having a record of a conversation, both as it’s happening and when looking back on it later, actually helps both of us. The form of communication is handling much of the load for me, lessening the stress being placed upon my atypically-wired brain, and helping ensure both that I understand what you’ve said and that I got to say everything I needed to.

So hang up the phone, and send me an email.

Plus ça Change, Plus C'est La Même Chose?

I Don't Think So

“I’M ASSUMING,” wrote a family member, “that you have the desire to change your life.” This in the wake of me pointing out that by the necessary rules of surviving in society, I appear to be worthless.

Change what, exactly?

My life changed in October 2016 when I received my diagnosis. My present changed, my future changed, and my past retroactively changed. No longer a failure and a fuck-up, instead I was an autistic adult who never received any support or accommodation for being autistic. Except that because I was diagnosed late, my life now is a near-constant fight to be recognized as needing support and accommodation. There’s no record of me having received support and accommodation for the previous four decades of my life, so no proof I need it now.

Why do people keep looking at me to change?

That’s what I was doing for forty years: changing, day in and day out, to suit society’s background radiation of conformity, while doing so unknowingly grew a kind of psychic plaque in my brain, which when pushed post-diagnosis by an attempted Vocational Rehabilitation job placement triggered the stroke of an autistic burnout in which I still remain trapped a year later.

I am not what needs to change. Diagnosis revealed who I was supposed to have been all along. Accepting that revelation was the change I needed to make.

What needs changing are the obstacles set up in my forward path as a late-diagnosed autistic adult who needed support and accommodation all along but didn’t get it and now needs the potential sources of support and accommodation at the very least to recognize me.

To see me.

My life already changed. It was rewritten. Retconned. Its hidden truth revealed at a moment that increasingly feels like it came too late.

Here I am. I changed for the world for forty years. Diagnosis started to change me back into who I was supposed to be. I think it’s well past time for things to change for me instead of me having to change for them.

Thoughts On Being Worthless

Living At My Wit's End

THE THING about how even one of the good days can almost break you is that when you have a good day like that, the next day is basically shot to hell, too.

I spent yesterday in something of a stupor, after getting myself our to do morning chores at the nonprofit, after which I tried also to get a couple of other things done there, but realized I had nothing left in the tank. I tried to buoy myself at least a bit by going out to breakfast in the neighborhood but of course one spot mysteriously and unhelpfully has been “cash only” for days now, and all the others are closed on Mondays.

So instead I went home and fell asleep on the living room couch for three hours in the middle of the afternoon.

By that night, I wouldn’t say I was despairing but I did have some pretty clear ideas on what all of this says about my future.

I wish I had anything to contribute to the world that would make people want to give me their money. I’m pretty sure I can’t even offer consistent labor to an employer. I’ve got nothing to give, but somehow still need to afford the world. It’s pretty great that the only way to figure one’s worth in a world that requires money to live is by whether or not you have a way to make it and I don’t think I do. So we know what that makes me.

Then I went to bed.

What prompted all of this is that I’d spent Monday having to recover from an only low-grade work day at the nonprofit on Sunday, which combined with how my last paying job went makes me pretty sure I have no way of ever generating income.

So, worthless.

That last employment attempt (a job placement through Vocational Rehabilitation after my diagnosis), only four hours a day, sent me into a distress spiral. And low-grade, lightweight days at the nonprofit require at least a day of recovery? That doesn’t translate into future employment very well.

I don’t have a single thing to offer that produces money. Whatever else I do have to offer is effectively useless without also being able to produce money.

My disability determination being that I’m not, Social Security expects me to produce my own income. When even good, low-grade, lightweight days at the nonprofit prompt the need for at least a day of recovery, any thoughts about working send me into flashbacks to that job placement. The idea of having to walk into another new workplace and try again makes me feel like I have, to re-use a term, some sort of low-grade PTSD.

I’m tired of looking around and everything feeling like it has to be a fight, and fights that I’m mostly being set up to lose.

Disclaimer: This is not a “cry for help” or meant to provoke concerns about “suicidal ideation”. I am not worthless as a human being, and have no interest in not being here, but being here requires money, and apparently I have nothing to provide or offer to make any, and I am at some point going to run out of it, and I am at my wit’s end.

One Of The Good Days

A Look Into My Autistic Brain

SOBBING BREAKDOWNS, or the narrow averting of them, aren’t just something that happens on a bad day. This is one of the things I’m not sure people understand about the autistic brain.

Today at my nonprofit project, since the weather was nice and we had enough people on hand, we had our first visiting hours since relocating in late December. The first public visitors, in fact, that the goats have had for two months or so, since we’d closed up shop before the move in order to focus our weekends on doing the necessary work.

We spent the morning filling in what we think are old, sunken-in gopher holes to rid the field of trip hazards, and afterward, while some volunteers worked on finishing the smaller of the two shelters, I spent most of the day staffing the gate, greeting people, letting them know they could come in, and doing some version of my rules patter.

Over the course of four hours or so, we had a steady stream of visitors, but not too many at any one time, and there were no hassles to deal with or warnings to give out. Everyone behaved themselves, enjoyed themselves, and everything about the day went smoothly.

Nonetheless, on the way back home, just a few minutes into having stopped to run a grocery errand, I had something of an executive functioning crash and found myself toward the back of the store, unable to make a decision about which way to move, or what I needed to do next. It didn’t last long, but it happened, and when that happens in public it’s at least a tiny bit terrifying.

By the time I actually made it home, while the sobbing breakdown didn’t come, I could feel it, hovering around the edges. I guess considering its options?

An outside observer would look at the day, look at how it went, see the crisp, sunny winter day, the work getting done without struggle or strife, the people enjoying getting to visit inside with the goats, and probably not understand getting to the end and having one’s brain seize up, and one’s emotional state threaten to crumble.

But that’s what the autistic brain is like. Not all the time. Not every day. But, yes, even on some of the good days. Even with a routine script of sorts that you use when having to be socially performative with people, even if you’re talking to them about something that means something to you personally, all those moments, together with the finishing up the backfill around the yard hydrant and carting buckets of dirt around, they can be too much.

Even when no single part of it all, nor even the entire thing taken as a whole, is, per se, “bad”.

You can maybe start to see why I’m still in a year-long autistic burnout that flared up when I tried to go back to steady, daily paid employment last year. Why I’ve not yet tried again. Why I’m flailing impotently at Social Security to give me something to hold onto while I try to find out if I even can.

Yes, today was a good day. But the way my brain is wired doesn’t always care about good or bad. Sometimes it just cares about impact.

But imagine what the bad days are like.

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