February 2019

Five weeks ago after an epic autistic meltdown that then a colleague disparagingly reduced to “venting”, I took an unplanned and unceremonious sabbatical from the nonprofit I helped form back in 2014 as part of “rescuing” a herd of fourteen urban goats from being split up into their original pairings and sold off.

I stayed away for two and a half weeks (wondering along the way if even things I care about were just going to break me), and then only ventured out once a week when no one else would be around, just to see the goats.

The first half an hour would be good, and then sometime in the second half an hour I’d just get sad and tired.

During this time I started handing over the keys to various of my longtime responsibilities.

This week, I had to do tech support for some of what I’d handed over, which meant changing some things around, and resetting passwords in hopes of setting things right. It exhausted and frustrated me and every other minute of it I just wanted the damn problem to be fixed so I could be done with the stress.

Hours later, the same person who lashed out at me for venting while I was having a mental health crisis sent a message passive-aggressively crediting my sudden newfound “initiative” but criticizing my barging back in to reassert adminstrative control over things without clearing it with anyone.

That wasn’t, of course, what I’d done. But they assumed it was, that I’d just up and started taking the reins back without talking to anyone about it. Because I guess that’s what they think of me.

I’ve quit for good.

I spent half the night assembling material, paperwork, and electronic data to turn over to the organization. I’ve written my official resignation letter. I’m preparing to make sure my organization email address is forwarded and has an auto-response set up.

For almost the past six years, the herd has been the substantial portion of my identity. I’ve worked too long and too hard to subject myself to the sort of dismissive abuse I’ve seen at the start and the end of the past five weeks. This is not the first time other people at the organization have been subject to abuse from the same individual, but I simply don’t have the psychic capacity to fight.

All I can do is save myself.

The problem is that now I have nothing. In a very real sense, I am nothing.

All I have now is the ongoing fight with Social Security to avoid eventual poverty, one that I can only assume from all the interactions with them so far that I am going to lose.

I have an apartment on a piece of property that’s looking to sell, looming the threat of having once again to find a place to live.

I have two cats who don’t particularly get along, but at least get along with me.

I have weekly trips to the zoo that are supposed to be for my mental health except lately the zoo itself has become a frustration.

I am no one.

I am here, and I don’t intend to go anywhere, but I am no one and I am nothing. I have nothing to show for anything I have ever done with my life.

And at forty-nine, all I have to look forward to is a second half that looks to be more of the same.

I’ve decided to try my hand at #InstagramInspiration posts, but I’m not sure if I’m doing the influencer thing right. It’s a tough form to crack.

This week has not, in general, been going well for the All in a Row team, with a producer complaining that they had a roll-out planned for Laurence but a “leak” ruined everything, the play’s official account complaining that it’s just that critics don’t understand theater, and the artist who conceived of the original incarnation of Laurence spotted laughing at him being referred to as “a sad little modern chimney sweep”.

As the first week of #PuppetGate comes to a close, playwright Alex Oates appeared on the BBC’s World Update program (starting at 16m:57s) to discuss the controversy surrounding the play’s use of a puppet to portray its only actually autistic character, and now the cracks really are beginning to show.

So, the play is set on the night before their son, their beloved son Laurence, is going to be taken into residential care. It focuses on the adults in the play, and talks about how they’re feeling about the fact that their son is being taken into care. It was a difficult decision on how to portray a nonverbal eleven-year-old with severe autism, and we decided after much thought and consultation that the best way to do it was to use a puppet. […] We decided that it was not practical having a child actor playing that part. I didn’t want to write them out of the play completely because I feel like disabled people don’t get represented enough, and the implicitons of using an adult with neurodiversity to play an eleven-year-old nonverbal person with severe autism, I just felt it would lack realism.

There’s a lot to unpack here, but I’m going to skip that this is yet another story being told from the perspective of the parents of an autistic person as if that isn’t in fact already the dominant story being told to the general public about autism, and I’m going to skip his use of the weird “adult with neurodiversity” phrasing as if “diversity” is a thing any single person can have, and instead I’m going to pull out the part about representation.

In the selfsame sentence Oates manages both to defend the use of an inanimate puppet as being about disabled representation while also dismissing using an actually disabled actor instead as not realistic.

Claiming critics don’t understand theater while also claiming willing suspension of disbelief is a thing for puppets but not for age-shifted actors? I’m not especially convinced that any sort of planned “roll-out” for Laurence by this particular team would have gone any better for them than this unplanned one.

If you haven’t been keeping up with some of the most interesting thoughts about #PuppetGate, see this Erin Ekins thread about trauma, this Emily Page Ballou thread about puppetry including a comparison to Julia from Sesame Street, and this David Hartley post about representation of neurodiversity.

This by necessity is less about scientific reality than about observing interesting patterns. I can’t speak to causation or, really, even any true correlation. It’s just that recently and quite randomly I had a string of thoughts I wanted to set down here.

Although I came to it late, let’s start with monotropism, which posits that the autistic mind is “one that focuses its attention on a small number of interests at any time, tending to miss things outside of this attention tunnel”. When I wrote about this before, I mentioned having happenstantially run across a study that seemed to support the premise.

Thanks to the fMRI scans, the researchers were able to confirm that in the brains of people with autism, connections persist for more extended periods than they do in the brains of neurotypical individuals. In other words, in autism, the brain finds it harder to switch between processes.

This week I got to thinking about how the persistent connections that could underlie autism-as-monotropism could relate to everything from sensory sensitivites to meltdowns, at least in terms of some common, parallel ways to describe and discuss them, and I started wondering about how trauma gets laid down in the brain.

If the autistic/monotropic brain is one that holds onto connections for longer periods of time than typical brains, is there an avenue of inquiry here into whether or not that helps explain sensory sensitivities? A typical brain might be momentarily put off, say, by bright lights, but if the autistic brain essentially can’t shake things off is it possible that it’s dealing not just with the sensory input of the bright light in a single discrete moment, but instead cumulatively over the course of that moment, and the next one, and the next one? Could a brain that can’t switch tracks simply be holding onto its reaction to stimulus in a way that inevitably increases the pressure?

This, then, got me me thinking about meltdowns, especially in light of how I’ve discussed my own.

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.

At the time I wrote that, I wondered aloud the degree to which what I was talking about there was a kind of tiny trauma. Could each one of those incidents actually have imprinted so heavily that they remained ready to be re-triggered every single time a similar incident occurred, so that each time I reacted as if all of them were happening again all at once?

If so, could the persistent connections potentially underlying monotropism explain the mechanism by which that happens?

We know that in dramatic traumas such as those which can leave behind the impacts of PTSD there are lingering changes to the brain.  Sufficiently intense traumas are going to create significantly intense aftereffects in the neurotypical and the atypical alike. What happens, then, to an atypical brain whose connections persist for, well, atypical lengths of time?

Might the impact of even of lesser stimuli get imprinted more firmly due to persistent connections, waiting then to be brought back later on when a similar stimulus surfaces?

I don’t mean this to argue, “Tiny traumas are to autistic people as dramatic traumas are to neurotypical people.” I just mean that since we know dramatic trauma affects how the brain functions into the future, could the persistent connections of monotropism, through the ways in which trauma can get laid down in the brain, help explain autistic experiences such as sensory sensitivities and what I’ve described as the “undifferentiated emotional time” type of meltdowns?

Are there studies out there which intentionally or otherwise illustrate, or dispute, these sorts of connections or mechanisms?

You are racist because you were born and bred in a racist, white supremacist society. White Supremacy is, as I’ve said earlier, insidious by design. The racism required to uphold White Supremacy is woven into every area of our lives. There is no way you can inherit white privilege from birth, learn racist white supremacist history in schools, consume racist and white supremacist movies and films, work in a racist and white supremacist workforce, and vote for racist and white supremacist governments and not be racist.

Ijeoma Oluo, So You Want to Talk About Race

Almost twenty-five years ago in San Francisco, I was jumped and beaten half a block from my apartment. It’s the one and only time in my life I’ve ever been assaulted.

The only things I knew about my attackers were they were young and male (I could tell from their voices) and they were black (I could tell from their hands). I lay curled in the middle of the street for what could have been moments or minutes, until a neighbor chased them off.

I then spent an entire month afraid of every single young black man on my street. I wouldn’t cross to get home until there weren’t any I could see near the front stoop of my apartment.

You could mount a defense for this, and I probably did. Something along the lines of arguing that since all I knew was “young, male, black” it was only natural that I’d be suspicious in this way. Maybe there’s a neurological reason somewhere in the lizard part of our brains. Except that to this day if you suggested I’d have responded the same way if all I knew about my attackers were that they were, say, old, male, and white, I do not know that this would be the case.

At any rate, after a month of this, with no sign this response on my part was diminishing, what happened was that I made a choice. After a month of this, I looked up at my street and told myself that the young black men on my street didn’t deserve this sort of ongoing fear, and, really, neither did I.

In telling the story that he did during a Hollywood press junket, Liam Neeson revealed a series of very different choices.

First, he specifically made the choice to ask his friend about the color of her attacker. Not his height, weight, gender, hair color, or whathaveyou. He specifically asked about the attacker’s race, and then he specifically made the choice to wander the streets with a weapon hunting black men.

Neither his murderous response nor my monthlong avoidance are sustainably defensible, but my point is that even if we emotionally react from the lifelong conditioning of being white in a white supremacist society, we do have a choice in how we respond to that reaction.

We literally have the option–or, really, the obligation–to call bullshit on ourselves.

Neeson, in telling his story, sought only to suggest that the horror of it was that seeking revenge is bad, or perhaps just costly. This, too, is a choice. The choice to pretend the terrifyingly racist aspect of his story somehow didn’t exist. It’s not like he confessed that he asked his friend the color of her attacker and then realized how horrible that question was, whatever we would then think of that. Instead, he straight-up confessed to a racist premeditation to commit murder.

One white movie critic threw up his hands in some sort of flailing act of performative despair, deeming the backlash to Neeson proof that one should never mention one’s “flaws”, even if they are in the past. As if once roaming the streets looking to murder a random black man somehow were just some sort of “flaw”. I don’t know where you even start with such a response.

I don’t relate my own story here to say that I am better than Liam Neeson, but for the context it provides. The context that says we white people (especially, although not exclusively, here in America) can’t help but be racist. That one white movie critic notwithstanding, it’s not that we white people should never talk about these things, but that we need to not be oblivious or careless about how we talk about them.

Neeson’s story isn’t a story about a white person with racist ideas about black people honestly confronting those ideas. It’s a story about a white person with racist ideas about black people not doing that.

I relate my story because I hope it underscores the fact that we white people need to take the fact that we can’t help but be racist as a given, and then make a choice about how we’re going to address it when it rears its head. I relate it because somewhere in your life, you have a story like mine, although hopefully not one like Neeson’s. Whether your story is public or private, what will you do with it? What choices did you make? Which ones are you making now?

That’s all we can do. Make a decision. What we choose ultimately, maybe, is what can make some sort of difference.

I repeat: stopping our racist patterns must be more important than working to convince others that we don’t have them. We do have them, and people of color already know we have them; our efforts to prove otherwise are not convincing. An honest accounting of these patterns is no small task given the power of white fragility and white solidarity, but it is necessary.

Robin DiAngelo, White Fragility

I wanted to come back to a bit from a study I talked about before because as much as I’d love to find psychotherapeutic support from someone who already is versed not just in autism but late-diagnosed adult autism, in many ways I would love it if a therapist asked me to educate them.

Many participants felt a need for professionals to be better trained in autism to ‘realise it may not always be possible to accurately read a person with autism’ (120F). Participants felt that this up-skilling of autism knowledge was not their responsibility: ‘some of them have asked to borrow books from me about autism or asked me to teach them about it and I feel that shouldn’t be down to me’ (181F). These experiences suggest that professionals were often ‘well-meaning’ (176M) but lacked knowledge of the different way in which autistic people communicate and socially interact, and the implications for their treatment and support.

The entire reason I’ve begun to feel a bit like psychotherapy hates autism is that I’ve spent almost a year writing about my experiences as a late-diagnosed autistic adult but to my knowledge no therapist (or anyone else in a position of authority over me) has ever read more than a post or two. Certainly the therapist who determined for Social Security that I’m not disabled didn’t.

It’s begun to make me doubt health practitioners in general.

Patients presume that their doctors read up on their health and treatment history (else why are we always making sure to provide past records to new practitioners?), and in the psychotherapeutic realm shouldn’t that include whatever history the patient already has of discussing their issues? If therapists don’t want to read a patient’s history, do I now need to assume that none of my doctors bother to get up to speed before treating me, either?

When it comes to mental heath, should we not consider a patient’s own pre-existing words, in whatever form they’ve put them, to be part of their treatment history? Therapists keep notes. So do patients. If patients think that sharing those notes with their therapists will help their treatment, shouldn’t therapists oblige?

(I’d push the posit further: if difficulty with socially performative circumstances is part of a patient’s impairment, shouldn’t the ADA require that therapists provide at least some form of accommodation given that therapeutic norms tend to be socially performative by nature?)

I’d be prefectly happy to consider “up-skilling of autism knowledge” my responsibility. Mental health professionals, please just ask. I’d love for you to ask. Then, and only then, maybe we’d have something to talk about.

I do not know the degree to which I can come back. In the meantime I’ve kept the books updated and filed/paid our annual state and federal filings. It’s clear to me that I feel like I’ve burned out on any vocation or avocation I’ve ever done that required working close-quarters with other people over a period of time. Or, burned out on that part of it, anyway. In retrospect (decades not just months), I do wonder to what degree any work that involves close interpersonal coordination was putting way more pressure on me than I understood, and that post-diagnosis I should have been managing the balances better, whatever that might have entailed. But between navigating social comms, performance distress, literal neurological trouble getting off whatever track I’m on, and meltdowns I have no internal control over under high-pressure circumstances, every day close involvement clearly isn’t sustainable.

And that’s how, today on Slack, after an unplanned two-and-a-half week sabbatical from my own nonprofit, soon to reach its fifth anniversary, I announced that it’s probably over for me.