Who Am I?

Is Anybody There? Does Anybody Care?

Posted: April 30th, 2020 | Author: | Filed under: Personal | No Comments »
Is anybody there?
Does anybody care?
Can anybody see what I see?

I remember the first time I saw the musical, 1776. It was when we were living in Shreveport. I remember the street and the theater where Mom took us to see the stage performance sometime after the particularly … eventful period in West Virginia. Shreveport wasn’t any less challenging for me than the other places we had lived, but it was a change. I date and order my memories by their location and setting. And that place and those events mean I was either 9 or 10 years old then. So it was the spring or early summer of 1975.

I loved many of the lines and songs in the musical, and as was often true for me, I repeated many of them over and over for years. No, that makes it sound like I stopped repeating them at some point. I never have. It’s a combination of verbal stimming and delayed echolalia, but of course I didn’t know that the things I did and my experiences had descriptive names until the last few years.

One song in particular, though, haunted me. It was one of those songs that seemed to speak directly to my pain. Is anybody there? Does anybody care? Can anybody see? I remember crying in the theater that day in the final part of the song. When the words echo in my head today they still bring tears to my eyes. Yes, I understood then and understand now the meaning of the song in the context of the musical, but those words when the performance level meets their emotional weight transcend that context. Those are the words I’m certain every child in pain has screamed silently to the world.

I searched and there’s a recording of Brent Spiner performing the song. It’s wonderful and if you’re not familiar with the musical, take a minute to listen to it.

The song’s three questions have been on loop in my brain the past couple of days. The loop is triggered again and again each time I hear and read statements even from those trying to do the right thing in the Austin/Round Rock metropolitan area during this pandemic in the face of immoral and malign actions by the Texas governor. I can’t tell if they can’t see the outcomes that are so clear to me or if they are simply willing to accept outcomes that should never be considered, much less tolerated.

While my meaning and intent were clear in my mind, I realized in retrospect my comments linking certain actions to eugenics in my post on “herd immunity” may not have been obvious to the reader. Herd immunity in human populations is often a goal specifically because it protects the vulnerable members of the population from serious illness or death. That’s a laudable and moral goal. When we act to protect each other, especially our most vulnerable members, to the best of our ability, we are living as moral, loving human beings. We are highly social creatures and we are in many ways wired for goodness. Evolutionary biology, anthropology, evolutionary psychology, social science, and every other measure we have points toward that truth. And yet we are also the most violent and destructive species on this planet. We are capable of great evil. And both tendencies are on full display during this crisis.

Far too many people across the political and ideological spectrum discuss this pandemic in terms of managing the rate at which the vulnerable members of our society die off so it doesn’t overwhelm our medical system and cause suffering for everyone else. The pandemic becomes something to manage to spread severe illness and death over an extended period of time so those most vulnerable to it don’t disrupt society by all dying at once. In this scenario, they hope that those who survive the illness develop this perverse version of “herd immunity” (when there is nobody left alive to protect) so the virus will stop inconveniencing their lives.

That perspective is based entirely on eugenics and the theory that we’ll improve the species by weeding out the weak and vulnerable. It is evil. Trading human lives for money or convenience should be a taboo trade-off. And those even willing to consider that trade have demonstrated by not immediately rejecting it out of hand that they are at best morally suspect human beings and cannot be trusted with the lives of others. If you did not read Dr. Richard Beck’s essay linked in my previous post, read it now.

Our Moral Fragility

The University of Texas in Austin has been doing modeling and projections for the state and the nation, but they began with studies focused on the local area and they continue to produce those as well. Every study involving SARS-CoV-2 and COVID-19 is preliminary and still undergoing review. That’s the nature of the world dealing with a highly infectious and deadly virus that simply did not exist half a year ago. The world is seeing how science works at full speed in real time. And it’s never one breakthrough building systematically on another. It’s an erratic convergence on the facts over time. But UT is a Tier 1 research institution. Their preliminary studies are at least as credible as anyone else’s and more so than those from many sources.

UT has published two recent studies on relaxing social distancing mitigations in the Austin/Round Rock area. The first was on April 23 and the second was on April 28. I’m focusing on the latter in this post, but the former is here for those interested.

COVID-19 in Austin, Texas: Relaxing Social Distancing Measures

After the state governor’s late and detrimental interference in local metropolitan area management of the pandemic, UT released the following study.

COVID-19 in Austin, Texas: Averting healthcare surges while relaxing social distancing

I appreciate the way they framed in the study what should be the only moral consideration, protecting those at highest risk, as a practical consideration. When your political leadership lacks moral character and a significant portion of the population appears to share that lack, moral guidance has to be framed in practical terms and compared to outcomes that would negatively impact those who lack such basic moral character. It’s sad that we live in a world in which that approach is required, but I understand why they used it. Since there is no evidence we will have any sort of effective test, trace, and isolate containment infrastructure and we will not be allowed to suppress the outbreak to levels where TTI is feasible, it’s not considered in the study. (I could be mistaken, but I tried to parse the details to the extent I was able and that didn’t seem to be part of the assumptions.)

Even so, look at the two graphs in the study marked as figure 2 on page 6. Those are the two “best case” scenarios where the projections predict we can at least keep from exceeding hospital capacity. They require that we maintain at least 40% social distancing mitigation, “cocoon” the 25% of the population that is high risk and vulnerable, and cycle in and out of lockdowns every time hospital utilization exceeds a trigger threshold.

First pay attention to the vertical y-axis of the graphs. Yes, both graphs keep the hospitalizations below the critical hospital capacity horizontal line but look at the numbers used in the scale. Thousands of people will be hospitalized on an ongoing basis. I believe something like half of the people hospitalized end up in ICU. The typical hospital stay is well over two weeks. And a large percentage of those who end up in ICU die. And it is not an easy death, if such a thing exists. People are left fighting for each breath, their organs failing. And they are alone, with no family and no friends. It’s a lengthy, brutal, terrifying, and lonely death. All of those who do recover will spend their stay desperately ill, fighting for life, with no assurance they will ever leave. And they all will have no family with them to comfort them or help them. Sure, the rest of us will still have functioning hospitals, but don’t gloss over the reality.

Now look at the horizontal x-axis of the graphs. That’s the length of time measured in months. There are lots of variables in the length of time those lines extend. I don’t pretend to know them all, but I’ve learned some of them. Variance in those numbers can easily extend the period with hundreds and thousands in the local hospitals even longer. The second figure extends longer than the first with only one change in the assumptions. But both graphs extend at high hospitalization levels for a year or more.

That’s horrifying! And I don’t see any way it can be sustainable. As awful as COVID-19 can be for each individual hospitalized victim and their family, try to place yourself in the shoes of the hospital staff providing care. It most directly impacts doctors, nurses, and nursing assistants, of course, but nobody at the hospital will be spared. The technical staff providing tests and treatment, the kitchen staff, the custodial staff, the administrators, and everyone else working in the hospital will show up every day in a hospital filled with desperately ill long-term patients fighting for life with many dying every single day. They will work in fear of being infected and infecting people they love. Some of their friends and coworkers will die from COVID-19.

And we expect them to show up and keep doing the intense and critical work they do day after day after day under those crushing conditions for a year or longer?!? My God! That’s more than any human being can bear. People break under that degree of unrelenting stress, fear, pain, and empathy for those who are suffering and dying. Everybody breaks in their own unique way at different times and at different points, but every human being has limits.

As a veteran, I mostly dislike the shallow, empty, and sometimes harmful comparisons of this pandemic to a war. A medical crisis is not a war and you don’t approach it the same way you do a war. But even though I served in relative peacetime, I was trained for divisional level staff planning in my specialty and I remember one critical planning consideration was always the human toll. We always had to allow periods of less intense operations and opportunities to recuperate from the unrelenting high stress of direct combat or operations in a high risk environment. Human beings can rise to amazing challenges and endure tremendous pressure in the short term and even for longer periods when utterly necessary. We’re highly adaptable creatures. That doesn’t mean those experiences don’t have long term consequences. They do. But the majority of people can remain mission effective as long as you ensure they have opportunities to relax and recuperate. If you push people too far, too hard, and too long under extremely high stress situations, we stop functioning effectively. We break. We can no longer fulfill the mission, whatever it might be.

That’s what I see when I look at that x-axis. I see what we are asking our medical caregivers to endure. My eldest is an ICU nurse in San Diego. I see her face and all those like her in those graphs.

Any person who can look at those graphs and the human suffering and death they entail and perceive them as any sort of acceptable or even desirable outcome has abandoned their humanity. Such a person is not moral or kind or loving. That person has made themselves into a horror and an abomination, a gross caricature of a human being, and a moral cancer on our society.

Moreover, the approach outlined in those graphs is not only immoral and inhumane, it is impractical and unrealistic. As we destroy our healthcare workers, that red horizontal line representing hospital capacity will move down. “Beds” are used as a shorthand way to describe everything required to care for a patient. Yes, appropriate physical space matters, but it’s the most trivial of the requirements. Equipment and supplies matter more. But the most critical aspect are the people providing care. They are not expendable or easily replaced. Training more is a long slow process, even assuming others are willing to enter the field under those conditions. A year or more without any meaningful break? At most of the hospitals around the country? That’s an impossible demand to meet.

We are the wealthiest nation that has ever existed on this planet. Right now, everyone around the globe is effectively begging to pay us to hold their money at interest rates that are not just extremely low but negative when inflation is considered. (Of course, most of the national debt is simply money we owe ourselves as a nation in an accounting exercise because that’s how macroeconomics works in general.) We have all the resources we require to manage this pandemic, stabilize families and businesses economically, produce and distribute the medical equipment required, provide essential medical care, build and deploy the essential testing, tracing, and isolation public health infrastructure, and save countless lives.

We lack only the moral will to do it.


COVID-19 and “Herd Immunity”

Posted: April 28th, 2020 | Author: | Filed under: Misc | No Comments »

I’ve heard a lot of takes, even from more mainstream and even “liberal” sources in the United States that the goal is to control the spread of the virus so it doesn’t overwhelm our health care system, but let it spread through the human population in some sort of “controlled” manner until we eventually reach “herd immunity”. I shouldn’t be surprised, I guess. We have deep eugenicist roots in this country. As I wrote elsewhere, the Nazis got a lot of their initial ideas and even laws directly from us. We had mandatory sterilization laws long before they were implemented in Germany and the last ones were not removed from the books until the 1950s. However, involuntary sterilization remains a legal practice in the United States to this day. It just normally requires a court order rather than a blanket law. A lot of race theory and the racism it supports is based on eugenics. Racism and eugenics are intertwined and threaded throughout our society.

So I shouldn’t be surprised. I know this is who we are. I know this is who we have always been. In this instance, though, the sheer callousness toward mass death and suffering astounds me. That’s what this perspective entails. Yes, the outcomes become immensely worse if our hospitals are overrun. The direct deaths from COVID-19 grow dramatically because there isn’t capacity to save everyone that could otherwise be saved. And because the health care system is overwhelmed all cause mortality also spikes. Lots more people die when the hospitals are overwhelmed.

But even if it were feasible to allow the virus to spread through the population without containment in some sort of controlled manner so that it did not overwhelm our hospitals, that would mean millions of people would die and millions upon millions more would suffer tremendously and some subset would have permanently damaged health and wellbeing from the disease. In the US, we have a population of 330 million people. The absolute best case is that COVID-19 has a 1% mortality rate. It could be as high as 3%-4%, but let’s assume the lowest possible estimate. That’s up to 3.3 million people dead. Let that number sink in. But it’s worse even than that. An estimated 10% of victims will be seriously ill and require hospitalization. The typical term of hospitalization is 10 or more days with incredible suffering. And we are already seeing that some of those who survive suffer permanent chronic and disabling effects. That’s not surprising. SARS-CoV-1 and MERS demonstrated the same thing. So that’s up to 33 million people hospitalized, on the verge of death, and possibly permanently disabled.

And that’s in the United States alone. With a global population of 7 billion, even if herd immunity could be achieved with as small a percentage as 60% of the population immune, that means at least 42 million people globally will die. As far as I’m concerned, anyone who can consider that an acceptable outcome is a morally deficient human being.

On this issue I wholly agree with Dr. Richard Beck in his post on moral fragility. “We like to think we’re moral, loving people. We are not. Our affluence had masked our depravity.” The fact that we have contemplated trading lives for money demonstrates that depravity, even if we ultimately move away from the morally reprehensible choice. However, we are not moving away from it. A significant portion of our citizenry, even crossing ideological lines, have embraced their depravity and are trying to justify it as somehow moral.

However, even for those willing to make that morally depraved tradeoff, it does not appear feasible to have some sort of controlled spread. This virus is far too contagious. I’ve been watching the estimates of the median rate of transmission creep up from day one and they started at levels supporting exponential curves. The rate of transmission is called R0 or R-naught. The R0 of a virus represents the median number of people each infected person will infect without any controls or mitigation in place. The most recent study I’ve seen has been prepublished by the CDC’s own journal, Emerging Infectious Diseases. It’s scheduled for the July issue so it is still in review and may change, but it’s as credible as any preprint can be.

High Contagiousness and Rapid Spread of Severe Acute Respiratory Syndrome Coronavirus 2

The study calculated an R0=5.7 for SARS-CoV-2. For comparison, seasonal flu has an R0=1.3. One of the most infectious diseases, measles, has an R0 of 12-18.

I want to let that sink in for a moment.

The first implication should be clear. The idea of controlled spread of a disease that contagious represents magical thinking. There is no way to allow slow, controlled spread through a population even if you’re willing to make the immoral trade of a large number of human lives for whatever monetary or economic benefit you believe you’ll receive. Once the virus is allowed out of containment, it will spread in an uncontrolled manner every single time.

The second implication should also be clear. There is no path to any sort of herd immunity absent a vaccine. The paper provides the formula for herd immunity. In its simplest form, it’s just 1-1/R0. For R0=5.7, that requires 82% of the population to be immune. And that’s moving up into the 95% required for herd immunity to measles, something we were only able to achieve through a vaccine.

And, of course, the talk of immunity revolves around the naive assumption that exposure to the virus results in some sort of natural, lifetime immunity to it. There is nothing that indicates that’s a reasonable or likely assumption and quite a bit of early evidence that it is wrong. A lot of people with light exposures don’t have the right sort of antibody cells that encode immune system memory. But that’s true even of some who were seriously ill. They are finding that others do have the right sort of antibody but there isn’t yet any data that indicates the degree of natural immunity or how long it lasts. It’s good there appears to be a mechanism that produces the antibodies with memory. If there weren’t, it’s my understanding that a vaccine wouldn’t be possible. But it does not appear to operate at all evenly across the human population as a result of infection and recovery. A well-designed vaccine would have a much higher and more consistent rate of effectiveness. The early data also present a clear warning: If you’ve had COVID-19 and recovered, DO NOT assume you are immune! Wait until tests and supporting data clearly support the likelihood that you personally are immune.

So what do we need to do? The answer is not a mystery. It’s perfectly straightforward. We need to do what most other countries are already doing or preparing to do. First we must suppress the initial outbreak. That means a full lockdown until virus levels fall to whatever our capacity in an area to perform the second step might be. (That will not be consistent around the country.) We have not yet suppressed the initial outbreak anywhere in the United States. We are still at step one across the entire nation.

The second step is containment: test, trace, and isolate (TTI). It requires extremely widespread and easily available testing with reasonably rapid results. Some places, like nursing homes, will require multiple rounds of 100% testing of staff and residents. Health care workes require regular universal testing. Everyone working in close, frequent contact with others must be tested regularly. Test. Test. Test. As much as possible of the entire population in a region must be tested over time and continually retested. Every positive must be isolated until they are recovered and all their contacts who might possibly also have been infected must be traced, tested, and isolated as well.

If TTI fails in an area and containment is broken, the virus will begin to spread again in an uncontrolled manner. Once that happens and testing detects it, the area must immediately go back into full lockdown mode until the new outbreak is once again contained. However, even with full TTI in place, it is not likely that all restrictions will be able to be relaxed anywhere.

That cycle will continue until a vaccine is discovered and through vaccination herd immunity is achieved without mass death and suffering. That is and has always been the only moral choice and if this virus is as contagious as it appears to be, it’s also the only practical choice.

Those who do not follow those steps will see their hospitals overrun and their death rates skyrocket precisely as we saw in Italy, Spain, and New York. It’s not a question of if; it’s a question of when. And right now, the ‘when‘ is only weeks away for many parts of this country.


Autistic with Complex PTSD in a Global Pandemic

Posted: March 17th, 2020 | Author: | Filed under: Autism | No Comments »

As this crisis unfolds, I find my mind and body both feel in this somewhat eerie, staticky space. It’s a familiar feeling to me, though something I felt more frequently in the first half of my life than the latter half. I’m beginning to recognize some of the ways my autistic childhood experience intersected with my unreliable and often traumatic home experience to produce my particular defenses and coping mechanisms.

My childhood autistic experience was awful. At any moment, any interaction with any person, peer or adult, could go badly wrong up to and including verbal and physical assault. It wasn’t some group of bullies the way most people describe experiences of bullying. My friends sometimes abruptly turned on me. I’ve related some of those stories in the past. The first time I was placed among peers in a less structured context in kindergarten, it got so bad I had to be moved to a different school. And while some adults tried to be helpful, others were a nightmare. I guess they found me threatening in some way? I’m not sure. And that experience followed me everywhere we moved, and we moved frequently, and in every group I tried to join. I know now that I could not see and interpret the social cues that indicated things were beginning to go poorly. But to child me the world of other human beings felt wildly unpredictable and dangerous. It’s why I worked so hard to “fix” myself as I’ve described in other posts. It’s what drove and formed my will and determination.

That broader autistic experience merged with a home life that by any measure was wildly unpredictable and sometimes overtly abusive and neglectful. My earliest memories are deeply traumatic and that never really changed. Every time I began to feel like some sort of stability might be developing at home, the rug was pulled out from under me again. That’s how a child ends up with 9 out of the 10 adverse childhood experiences in the original ACEs study. They don’t happen all at once. That number represents an accumulation of trauma and adverse experiences over the course of an entire childhood.

In that light, I’m not surprised that a number of the symptoms I have managed, though not necessarily managed well, my whole life meet the criteria for complex PTSD. I never feel safe in no small part because my body and mind don’t know how to feel safe. I don’t even really try. I just try to keep my environment as managed as I can. And for me that often means trying to appease and calm the people around me. I need and desperately want connections to other people. Yet I struggle to maintain those connections. And people are also often the greatest source of fear for me.

My trauma therapist called me an empath the other day and it feels right, I guess. But I can’t even parse my own flood of feelings much of the time, much less everything I pick up from my environment. It often feels more like an undifferentiated wave or an inchoate mass than individual emotions. I sometimes handle it by dissociating from my body and even dissociating more or less completely. There’s a part of my mind that seems to be good at walking me through actions I have to take even when I’m not exactly present. It’s hard to describe, but I think part of it is because I never had the safety to fully dissociate even when what I was experiencing felt overwhelming.

All that combined to produce my particular ways of coping with the world. I’ve described elsewhere how, as I learned to feel and interpret my body in therapy, I recognized my default state was not calm. Rather it was more like what people often describe as anxious. As I’ve explored it more, I’m not sure that’s accurate. I think fear is a better word. My body is always somewhat afraid and that can quickly ramp up to terrified, usually when anger or similar emotions are directed at me or I have no idea what is happening with the people around me. I can tell things are ‘off’ but have no idea why or if it’s because of me.

And that, in turn, means my mental horizon is always pretty low. It’s why I struggle with questions about things I want to do, dreams I have, and plans for the future. I largely never developed those except in the vaguest of terms. My horizon starts with what I need to do today. Then raises some to keep track of the things that are coming in a week or month. Then I have some sense of demands beyond that point, but they are more tenuous and I don’t spend much time or mental resources on them beyond noting their existence. I place a great deal of emphasis and attention on what the people who depend on me need me to do.

And that means I don’t experience fear and anxiety the way many people seem to experience those emotions. I hardly ever catastrophize. That requires thinking about the future and I just don’t do that very much. I can spend a lot of mental energy on past interactions, but what I’m doing is trying to understand them so I know what went wrong and how I can repair it or at least avoid future recurrences.

And when a crisis does hit, my mental horizon narrows even further. Under duress, it can narrow as much as looking around, deciding what I need to do or can do right now in the moment, focusing my energy to do it, then looking around and figuring out what the next thing I need to do is. It’s why I cried during Anna’s song, “The Next Right Thing“, in Frozen 2. That song captures how my whole life has felt.

I think that’s why people have called me ‘good in a crisis’ or have commented how I seem to stay calm when everyone else is freaking out. The reality is I’m never truly ‘calm’ and ‘crisis mode’ is more or less my normal. It’s simply a matter of degree for me. I can be overwhelmed and when things break for me it’s not been pretty or pleasant. But up to that point, I seem focused and in control.

I don’t want to give anyone the impression it’s some sort of calm, Zen-like state. It’s not. Rather, I’ve lived every moment of my life waiting for the metaphorical “other shoe to drop” with all the hypervigilance, tension, and struggle that implies. It does mean I often process the shock when that unexpected shoe does drop faster than those around me and move directly to action.

Living in a state of constant high alert definitely impacts my relationships, my health, and my well-being. It’s likely why I have such low motility in my intestines, which led to my health crisis and almost death a few years ago. I tend toward silence when I have no idea what to say, which people often misinterpret. And living every day in survival mode is exhausting in ways I can’t describe. It’s why I haven’t really been attached to being alive since I was nine years old, at least on my own behalf. I learned to keep that under control and have many tools to manage it, including always keeping in the forefront of my mind how much others do still depend on me. But it adds to the pile of things I manage every day of my life.

Nevertheless, it does mean when a crisis of any size hits, I’m as mentally and emotionally prepared as anyone can be. I absorb all the information I can and my autistic brain systematizes it for me. Things that don’t fit stand out. Reliability has a certain mental feel to it for me. I’ve always appreciated the way my brain does that for me. I don’t know how I would get by without it. I figure out what action I can take right now. I do that and start figuring out the next action required. Rinse and repeat.

I suppose that’s helpful? But honestly, I think it would be nice to feel safe sometimes. I’m so very, very tired.


US Christian Church Responses to COVID-19

Posted: March 14th, 2020 | Author: | Filed under: Personal | No Comments »

03/18/2020 Update: Yesterday, Austin and Travis County issued a revised order prohibiting gatherings of 10 or more people.

http://www.austintexas.gov/sites/default/files/files/Order%20-%20Prohibition%20of%20Community%20Gatherings%20of%2010%20persons%20or%20more%20and%20closure%20of%20restaurants%20and%20bars%203.17.2020.pdf

With that requirement, all the Churches mentioned in my email that had not already ceased in person worship services did so and moved to streaming. That demonstrates how important government action is since that’s the only way to establish uniform community policies in a crisis.

I did want to note one thing in the implementation by First Baptist Church, Pflugerville that seemed a little concerning to me.

  • Ministers will be at the Church in the MPB Foyer on Sunday mornings from 9:15 am til 12Noon for anyone who wants to drive through to:
    •  have us pray with you 
    •  have a time for us to encourage you
    •  share with us about a need you have
    •  drop off your tithes and offerings

We don’t yet know if the virus can be transmitted when a person is asymptomatic, though evidence seems to indicate that’s a possibility. The above complies with the order, but if a minister has the virus and is capable of transmitting it, that means they become a source that can potentially infect everyone who drives through. Hopefully that won’t happen but it sort of jumped out at me. Of course, the order doesn’t prohibit people from working in the same office space or gathering in other ways as long as they aren’t in a single space in close proximity, so there are still many potential vectors available to spread the virus. At least there won’t be gatherings of tens or hundreds of people in a single space for the time being.

03/15/2020 Update: Saturday night, the Austin mayor and Travis County judge jointly issued an order banning all gatherings in a single space of 250 people of more. It recommends curtailing all gatherings of 125 people and makes other recommendations as well.

http://www.austintexas.gov/edims/document.cfm?id=337524

I received an email from First Baptist Church in Pflugerville that they had received the order and would be splitting their services into two different buildings to keep those groups each below 250 people. I gather other smaller groups will gather as usual. I spot checked a few other of the churches mentioned and they all indicated various ways of complying, though those that had not already canceled in person services were not planning to do so.

I think this situation illustrates how important an effective government is in situations like this. Only the government can institute actions across the population rather than the disjointed response by individuals and individual organizations. Of course, we really need coordinated response at the local, state, and federal level. A virus does not respect arbitrary geographic boundaries. Pflugerville is on the border of Williamson County. Our boundaries run into Round Rock to our north. Williamson County has no such ban in place as far as I can tell. And our federal response remains a complete disaster. It’s clear we can’t rely on individual groups, including religious groups, making the right decisions at the right time serving the public good.


I am struck by the varying responses by different Christian denominations in the US as we are in the early stages of the exponential curve that has been seen in every other country to date and which is about to explode here in our country.

I want to start with the responses by the Episcopal Church I attend here in Austin. They have sought my participation as a lay reader, on the adult Christian education planning team, leading some of the classes myself, and in other ways. They have made me feel welcome in every way I can imagine this past year even though I am not Episcopalian. They have offered prayers and support through my Dad’s most recent health challenges and my father-in-law’s death. I can feel the hypervigilant, traumatized autistic watchdog in my head convinced that I’m missing something and waiting for the proverbial other shoe to drop, but I have felt not just welcomed but embraced in a way that has been uncommon in my life.

St. John’s Episcopal Church

Here are the guidelines from last week.

Greetings,
In keeping with recommendations from Bishop Doyle, we will make the following accommodations during worship until further notice:


1. Continue to thoroughly wash your hands regularly.

2. For the Passing of the Peace, we will stay in place, and only verbally share the peace—please, no handshakes.

3. The altar party will take extra precautions with liquid gel soap.

4. Communion will be offered with the hosts and the common cup. There will be no intinction (dipping) either by communicants or chalice bearers. The full value of the sacrament is received whether the recipient receives both sacraments or just the bread.

5. Be sensitive to others, if you are not feeling well, stay at home.

6. The blessed water will not be available in the back of the nave.

I look forward to seeing all of you on Sunday, those that feel up to it! May God continue to guide and direct your lives. May the peace that passes all understanding be with you always.

Here is the revised guidance for tomorrow and the next Sunday moving forward that was just sent out today.

Greetings to the good people of St. John’s,

As you all know, we are living in a period of time right now that is a source of anxiety, concern, and lack of knowledge; not to mention, fear. We are walking through a Lenten season that is new territory, a wilderness in many ways, with the worldwide issue of the Covid-19 outbreak.

Bishop Andy Doyle sent out a letter around noon on Friday to the diocesan clergy and Standing Committee with his thoughts, prayers and recommendations for how we are to continue to pray, worship and be God’s servants in the midst of this virus. The Bishop so succinctly stated, “We are not attempting to stop the spread of the virus. We are attempting to slow the spread down to a low multiple so our health systems may be at their best and provide rooms and ventilators for those that need it.”

We learned these lessons in both China and Italy.

So, I am asking you, the vestry is asking you, and our Bishop is asking us to take the necessary precautions. What will that look like at St. John’s?

Sunday, March 15, we will have services at the regular times with the following modifications: no chalice, no wine, no music, no coffee hours, no adult education, no lunch, and no gathering of the youth in the afternoon. All services will be live streamed on Facebook, and will be available for replay after services. Information about connecting to these videos will be sent out later today.

Sunday, March 22, there will be one service at 10 a.m. in English via live streaming on Facebook; and a Spanish service at noon also via live streaming on Facebook.

The Bishop is not asking the clergy not to lead worship; the Bishop is asking all of you to stay home.

Bishop Doyle states in his letter, “It is my Godly counsel that we refrain from gathering for worship and in large groups at our churches during this time of Covid-19 outbreak – enabling us to slow the spread. I am asking all parishioners to worship with us from home for the next two weeks.”

Staying home provides the opportunity to worship in different ways. Again from Bishop Doyle’s letter: “Is it uncomfortable? Yes. Is it irregular? Yes. Is it new? Yes. But is it Christian? Yes. Is it missionary? Yes. Will it require our best efforts? Yes. Will we have to figure out new ways to worship, spread the Good News, and serve our neighbors? Yes.
How timely that our Lenten meditation booklet, “Living Well Through Lent 2020”, is based around the theme, Practicing Courage with All Your Heart, Soul, Strength, and Mind. How appropriate, today’s reading is “When God Calls Us to Move out of our Comfort Zones”. The Bible verses with today’s meditation is, “For God did not give us a spirit of cowardice, but rather a spirit of power and of love and of self-discipline.”

In response to the Bishop’s call for us to “stay home”, the church office will be closed beginning on Monday, March 16 until further notice. We will be working virtually from home. If you need to reach me, my cell number is nnn-nnn-nnnn. We will finish our Wednesday Lenten series at another time. All outside groups that hold meetings are being contacted that they will not be able to meet until further notice. Vestry meeting, March 16, will take place via Zoom from the church. Other meetings are being postponed or taking place via Zoom. The work and worship of the Church continues, it will just look different for a while.

May we hold in prayer all those around the world battling this virus, medical workers and each one of us—God’s beloved children. Your support and understanding are gratefully appreciated.

Ann

The Rev. Ann McLemore

Interim Rector

I happen to be on a list for the United Methodist Church of the Resurrection in Kansas City, probably because I’ve checked out some of their sermon series in the past. They have also moved to online services only. They are a megachurch with thousands of members and multiple campuses.

Church of the Resurrection Online Services

Although it’s my understanding most Orthodox Churches are continuing services for now, I did see the following from the Orthodox Church of America’s (OCA) Diocese of the South.

Beloved, along with diocesan administration, I have been closely monitoring the developing status of the COVID-19 pandemic. In the past 48 hours it has become clear that if we do not slow the rate of infection through social distancing (i.e., self-imposed isolation) our healthcare system is likely to be overwhelmed by the number of cases. As we can see from the situation in Italy, this will result in a significantly greater number of deaths, due to lack of treatment, or rather the inability to effectively treat so great a number of those infected. Further, there is a growing body of evidence that suggests COVID-19 is an airborne contagion that cannot be contained simply by the reasonable hygienic measures with which we are all familiar (handwashing, disinfecting of surfaces, and the like).

In light of this, I am asking all parishes and missions in the Diocese of the South, in addition to the directives from the Statement of the Holy Synod, to respond in the following manner:

All parish and mission events and activities, including coffee fellowship, church school, and the rest, and all services other than the Sunday Liturgy of St. Basil the Great, the Vesperal Liturgy of the Great Feast of Annunciation, and the Presanctified Liturgies, are cancelled through March 29, beginning from today. At which point we will adjust this as the situation warrants.

Everyone in the parish or mission, other than the priest (and deacon), a reader, a server, and no more than two (2) chanters or singers (all of whom are physically strong and at low risk for COVID-19), should remain at home, even at the time of the Divine Liturgy. The holy body and precious blood of our Lord can never be a source of disease, it is after all for the healing of soul and body, but the COVID-19 virus can still be passed through the congregation. Out of love for our neighbor, we must do everything we can to protect the vulnerable by slowing the rate of infection not only in our parishes, but in the greatercommunity, and thereby allowing the hospitals and medical community to more adequately care for those most at risk. All who are “at risk” – the elderly, those with pre-existing conditions, any who are actively sick or exhibiting signs of illness – should absolutely absent themselves from the services.

Priests are instructed to commemorate all of the faithful on the diskos at the proskomedia (as I presume is your practice, regardless).

If possible, the service should be webcast on the internet so that the faithful may participate in the prayers, which are themselves a source of grace and consolation. Every effort should be made to provide the faithful with the service texts.

The clergy are to either:

Include the OCA’s petition or prayer in your services, or add into the Great and Augmented Litanies the special petitions from the Molieben in Times of Pestilence (GB of N, vol. IV, pg. 93-94, and 111-112 respectively). In our prayers we should especially remember health-care workers. They are going the bear a heavy burden during this time of trial.

Offer the Molieben entirely following the Divine Liturgy.

Clergy are reminded that they have the primary responsibility of visiting the sick, but should take care not to expose the faithful and others to the virus.

This is not the season of Great Lent we anticipated, but it is nonetheless a fitting Lenten effort: focus on the greater good of our neighbors, recognizing that this initial response to this pandemic will work for the greater good of our faithful and our neighbors. Use this time of “social distancing” for prayer and to keep vigil “in one’s cell.”

Please continue to work through your dean and diocesan leadership to address any particular concerns not covered here, and I will let you know of further directives.

Wishing you strength for the weeks ahead, and assuring you of my prayers,

+ALEXANDER
Bishop of Dallas and the South

I want to note that all those churches are ones for whom Communion is a deeply central aspect of their worship. That’s probably least true of the Methodist Church, but only as a matter of degree. The Eucharistic celebration cannot be done online and it is certainly the center of worship in churches like the Episcopal Church and the Orthodox Church. Foregoing it represents a significant sacrifice in those traditions among the faithful.

I wanted to contrast those announcements with the ones I’ve seen from the Baptist Church I attended for years and other local non-denomination evangelical churches I’ve attended or visited at different times. I’ll start with First Baptist Pflugerville from an email titled “NO CANCELLATION.”

Church family,

I know the Coronovirus is a big concern. And I know events and venues of all kinds are being cancelled all over the state, nation, and world. But for those of you who have been asking, WE ARE NOT GOING TO CANCEL CHURCH.

Let’s use our heads. Wash our hands frequently and use hand sanitizer just like we do at other times. Stop touching our faces. Perhaps stop shaking hands and hugging when we greet each other. (We can fist bump, elbow bump, ankle bump, or simply wave.) If we have to cough or sneeze, we should do so into our elbows. But let’s not stop worshipping our Lord together.

If you are not comfortable with coming, then by all means, stay at home. Otherwise, I will see you bright and early at 9:15 for Grow Groups and 10:45 for worship this Sunday!

Proud to be your pastor!

Bro. Steve

P.S. – We have no plans at this time to cancel “any” of our other church activities. If the situation changes, we will let you know.

Again, that appears to be representative of most, if not all, of the white evangelical churches in the area that I’ve interacted with in the past. Most have no mention of COVID-19 on their websites. A very large Austin Baptist Church does have a notice, but is still conducting all services and events in person.

Hyde Park Baptist Church Coronavirus page

In my own personal exploration, I could find just one such local evangelical church that has moved to online services only, Fellowship Church.

Fellowship Church Corona Virus

The US Roman Catholic Bishops have issued this statement. It’s general and they delegate responsibility for decisions about changing or suspending services to the local level.

USCCB Coronavirus Statement

Worship services are times where people regularly gather in close proximity to each other. As this virus moves through our naive (no immunity) population at the rates we have seen in every other country around the world, those gatherings will become major vectors. Moreover, given our complete societal level failure at testing here in the United States, we have little advance warning where the virus is moving. That means, in order to be effective at flattening the otherwise exponential growth curve of infection, distancing measures must be implemented before widespread infection occurs in an area.

I have no insight on ways we can improve our response to this pandemic. The uneven response may be unavoidable, especially given the lies and disinformation being spread at the highest levels of our government and the information that is being withheld or not even collected at all. But religious gatherings are a significant component of life for a great many in the United States, moreso than in some countries. I don’t know how other religious groups are responding, but Christianity collectively remains the largest single religion in the United States. And the indications above are not encouraging ones.

The links in this post will obviously become stale as time proceeds, but I wanted to include them for people to follow in the present moment. If anyone has thoughts or additional information, please share it in the comments.

Take care everyone. Grace and peace.


I Use My Words Redux – Inconsistent Ability

Posted: January 26th, 2020 | Author: | Filed under: Personal | No Comments »

In 2016 I wrote a post, I Use My Words (Except When I Can’t), just a few weeks after receiving my autism diagnosis. I’m not surprised that it’s one of the first things I felt compelled to share. It’s something that has plagued me my entire life completely without explanation. It’s hard to describe how intensely I worked and still work to keep it hidden. Like so many things, I even tried to hide it from myself. There are so many things I felt I had to put away as best I could. I have a lot of empathy with the CW Braniac 5 character’s “little boxes” for that very reason. The diagnosis and continuing therapy since then has been gradually opening some of those boxes.

There is a lot I didn’t say in that early post. Some of it I hadn’t yet let myself see and understand. Some I still couldn’t articulate. Although it may not seem like it, I understated both my ability and my deficit.

I was completely nonverbal until I was three years old. However, when I began speaking, I spoke in sentences. I skipped over all the typical stages of early spoken language development. I still had a lot of dropped and substituted syllables that made it hard for anyone other than family members to understand me. Speech therapy cleared those up by the time I was 5. I continued to receive a lot of negative feedback after that though, especially from peers, because when I did speak I often spoke in something of a monotone or a sing-song voice. I did not have typical inflection. I also developed a lot of what I would now call verbal stims, the stereotyped and repetitive use of language, including immediate and delayed echolalia. To be honest, I still experience that a lot. I’ve just learned how to hide and disguise my stims and echolalia well enough that people rarely see it or take note of it even when they do. And the times I do slip up around people in ways they notice it usually just goes in the “quirky” bucket.

I began serious work training my voice when I was 9 years old in the 4th grade. My mother had tapes and a cassette recorder. I sat with it for hours listening to the instruction tape, then recording myself and playing both back, and trying again until the two aligned. The tapes started with vowels, moved to dipthongs and syllables, and then words, phrases, and sentences. By the time I worked through them all, I had trained my voice to American standard pronunciation. My mother also had oral interpretation tapes, with which I began my work toward consistent inflection and tone.

However, when it comes to texts, I was hyperlexic. I don’t remember learning to read. I don’t remember a time when I couldn’t read. My mother figured out I could read within a few months of the time I began speaking, but I suspect I could read before I ever spoke. And when I say I could read, I don’t mean I could read some things that gradually grew and expanded over time. I mean I don’t remember ever picking up a book that I could not work through. I read faster the older I got, but I wouldn’t say it felt like my reading level ever increased. I found it soothing to sit with a dictionary and go through pages looking for words I didn’t already know. I wrote about being tested by a neighbor after 1st grade and testing at the 12th grade reading level. It’s probably more accurate to say I hit the maximum scores on the test instruments she was using. I did that routinely as a child.

I’ve tried to explain how it feels to “lose my words” in therapy many times, but it’s something I find extremely difficult to articulate in a way I feel communicates it to others. A couple of sessions ago, though, it happened for the first time in therapy. I don’t know why. That’s part of the problem. There’s no clear cause. There are no consistent conditions. Therapy is one of the few places I feel almost safe. She did not push me to speak. She was very patient, gave me space, tried different things, but did nothing to make me feel unsafe or threatened. It’s been a difficult few months for a lot of reasons and I’m sure that was a factor. But why it manifested that morning in that setting, I still have no clue. I was not completely unable to speak the entire session, so it wasn’t the absolute block it sometimes is. Last session my therapist told me I was able to get out 4 sentences over the course of the 50 minute session. I had felt like I had verbalized more than that, but it’s probably because I was working so hard attempting to speak.

My inconsistent ability is and has always been a major problem for me. I am frequently extremely articulate. And most other times, I seem to speak at least more or less normally. That creates an expectation from everyone who knows me about my ability. And even as a baseline, people expect others to have little problem speaking. For the most part, people do not seem to struggle just to speak, struggle with the process of making the different components work in a way that creates the sounds of speech. In my daily experience that means when I do not respond verbally as people expect, they interpret my silence as some form of refusal to speak. I’m angry. I’m blowing them off. I’m giving them the cold shoulder. I’m giving them the silent treatment. None of those things are true, but my dramatically and even wildly inconsistent ability creates expectations I’m unable to reliably meet.

I don’t have any answers. I wish I did. It’s not the only area in which I have inconsistent ability, but it’s probably the one about which I’m always most concerned. And this illustrates the problem with functioning labels and autism. Even in an area as basic as simply speaking, my functioning can’t be given any single rating. At my best I can outperform the majority of people. At my worst, I can’t speak at all. And my ability at any given moment can fall anywhere between those two extremes.


Father of the Groom Rehearsal Dinner Speech

Posted: November 6th, 2019 | Author: | Filed under: Personal | Comments Off on Father of the Groom Rehearsal Dinner Speech

My younger son was married this past weekend. As the father of the groom, I gave my speech at the rehearsal dinner. I tried to express some of the things I wanted them to take with them. And I wanted them to hear my love and care for them in a meaningful way. They both seemed to appreciate what I said. I had practiced a lot and managed to get through it without significantly choking up or crying. (I did a lot of that while working on it.) I thought I would share it here as well.


Welcome everyone.

For those who don’t already know us, I’m Scott Morizot, this is my wife Stacey, and we’re Geoffrey’s parents. Tradition holds that the father of the groom is expected to say a few words at the rehearsal dinner. I’m usually more of an impromptu speaker, but for this occasion I prepared what I wanted to say.

Time has flown since Geoffrey first introduced us to Morgan. In that time, she truly has become a part of our family. I definitely look forward to many more family game nights, movie outings. and dinners together. I also have to say that as a theater person myself, I’m personally thrilled that Moe has expanded Geoffrey’s appreciation of musicals and stage performances.

But love, especially love that endures, is built as much in shared struggle as in shared joys like this moment. The two of you have already faced challenges together and more are certain to come. In the hard times, it’s that person you love more than life itself who can, simply by their presence, provide the impetus that keeps you moving forward, one step, one day, sometimes even one minute at a time. I’m reminded of Samwise Gamgee in the Return of the King on the slopes of Mt. Doom when Frodo had reached the end of his strength.

“Come, Fr. Frodo!’ he cried, ‘ I can’t carry it for you, but I can carry you.”

Sometimes we have to carry each other. And we can find untapped depths of strength within ourselves when a person we love is in need. Love is a deceptively short word, perhaps the most challenging four letter word in the English language. It’s a word used to describe the essence of what it means to be human. Attempts to understand, define, and express love have captivated spiritual leaders, philosophers, musicians, and poets throughout history and across cultures. I offer the two of you these words on love by bell hooks from her book, “all about love”.

“Through giving to each other we learn how to experience mutuality. Giving is the way we also learn how to receive. The mutual practice of giving and receiving is an everyday ritual when we know true love. A generous heart is always open, always ready to receive our going and coming. In the midst of such love we need never fear abandonment. This is the most precious gift true love offers — the experience of knowing we always belong. Giving is healing to the spirit. Love is an action, a participatory emotion. This is why it is useful to see love as a practice. When we act, we need not feel inadequate or powerless; we can trust that there are concrete steps to take on love’s path. We learn compassion by being willing to hear the pain, as well as the joy, of those we love. The path to love is not arduous or hidden, but we must choose to take the first step.”

Tomorrow you will both be taking another step on love’s path. Keep a generous heart as you travel it together.

I want to leave you with a very short poem by Courtney Peppernell. I hope her words convey a sense of the sort of lasting love I wish for you both.

Sometimes the smallest details about a person are the biggest
                         reasons why you love them.

Finale – Week 7 of #TakeTheMaskOff

Posted: September 3rd, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Finale – Week 7 of #TakeTheMaskOff

This week marks the end of the official social media campaign for #TakeTheMaskOff. It does not mark the end of autistic engagement with a world where we are more often rejected than accepted. I have no story of personal impact from this campaign. I’ve perhaps thought more deeply about the topic areas, but I’ve had no revelations or dramatic changes. I did not expect any such experience. I’ve been surviving in this world for 53 years. My tools and techniques are evolving and improving, not transforming into something radically new.

Rather, I’ve chosen to add my small voice to this campaign in the twin hope that non-autistic or allistic readers might understand our experience at least a little better and that other autistic people might feel a little less alone. I felt so alone and so different from everyone for so very many years I know how hard that is to bear.

I have no expectation that our world will suddenly change, but I have to believe it’s possible to improve allistic understanding and acceptance of our differences. No matter how hard we try, we can never bridge the current gap alone. If we could, we would. The “best” we can currently achieve by current measures, our so-called “optimal outcome” boils down to nothing more than not being observably autistic to a removed third party who is not directly engaging us. Even that degree of masking, desperately trying to make all aspects of our movements, body language, expressions, tone of voice, and words conform to the always incompletely understood expectations of others, is never perfect. I know because I taught myself how to do it.

I could never, however, look and act “normal”, whatever that may be. And don’t tell me that there’s no such spectrum as “normal” and that everyone feels different and isolated at times. My therapist, who sees many such allistic people, tried to say that. And it’s simply not true. I understand that nobody can clearly define those boundaries of “normal”, those things which fall in the range of acceptable variation, versus the things that are not. I’ve often wished somebody could because I felt if I actually understood the rules, I could find a way to more closely adhere to them. But those rules exist in every human culture. And they are enforced, often without thought or intent but merely in reaction. Most people absorb them over time, especially as young children, so the rules all seem obvious and automatic. The social rules and nuances feel “natural” to allistic people. I didn’t and don’t simply absorb them and my “natural” behavior and reactions do not conform to them. I had to learn the rules through observation and experience, mostly as a child, as best I could. And violations of those unspoken, unwritten, and often unacknowledged rules mark you as less than human to other people.

Autistic masking is about avoiding harm and seeking acceptance. We all seem to have stories about both. I’ll mask less when I am loved, or at least not rejected, when I don’t. I’ll mask less when I can do so and still be safe. I’ll mask less when the world of people surrounding me grants me the freedom to be more visibly and outwardly myself, whatever that might be.

I’ve masked my entire life to one degree or another, or at least as much of my life as I can recall. I’ve worked at it semi-consciously, deliberately, and systematically since I was nine years old. That means I have poured energy and effort into masking for 44 years now. The only me I know is the one trying, and usually failing, to find a place among everyone else.


Coping Strategies – Week 6 of #TakeTheMaskOff

Posted: August 27th, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Coping Strategies – Week 6 of #TakeTheMaskOff

The last several weeks of this campaign have been challenging ones for me in different ways. This week’s topic is more positive and lighter, but it remains another difficult subject for me. The focus is supposed to be on things that help you mask less, but I don’t mask less and right now I have no plans to mask less. I believe I would have to feel safer and more accepted than I do before I could risk it. My entire lifetime of experience is constantly running in the background of my mind, telling me how people react when my observable behavior or social responses stray outside the limits of “normal” variation. Even today, when my mask slips the reaction is at best confusion and more often negative in some way. I try to correct those reactions, but once people have constructed a narrative about my feelings, thoughts, and intent based on their own interpretation, it’s really hard for me to reverse it, especially since I struggle understanding how they have perceived me. I go from managing things fairly well to completely lost in a heartbeat.

I’ve noticed one odd thing since my diagnosis two years ago. Everyone seems to assume my ability to mask, to read and understand the reactions of others, however imperfectly, and manage my own behavior and responses are strengths. If I were also intellectually disabled, as is the case for many (the rates I’ve seen range from 40%-60%, though a more recent study suggests the true rate may be 15%-20%) of my fellow autistic human beings, I would not be able to hide my autistic traits. It’s true that I have the ability to hide in plain sight. And it’s true that there are situations where that has been very advantageous, notably employment. But the few studies I’ve seen that have included well-being in their measures have all found that in aggregate those of us who are better able to mask actually experience lower overall well-being than those of us who can’t mask their autistic traits. Obviously individual experience covers the whole spectrum whether you are intellectually disabled or not, but the aggregate results are telling. I appreciate my intelligence. It’s as much a part of who I am as my autistic aspects. Given that I have the unexplained but often observed in autistic people large gap between verbal and spatial intelligence, my autistic brain even shapes the way my intelligence is expressed. But hiding significant parts of myself from everyone around me every minute of every day has been more of a drain and sometimes crushing burden than a benefit, especially since I’ve always longed to be accepted and loved.

Even if I felt safe enough to mask less, the reality is that everyone in my life knows I can mask, that I can fit in to some degree, and that I can look more or less normal. And it’s difficult for anyone to understand why I might not want to do so or how hard it can be. I now know that it’s all mostly effortless for them. Everyone struggles from time to time in certain social situations and they probably believe that’s what it feels like for me. It’s not, of course, but I think you have to be autistic and masking to truly understand how it feels and how difficult it can be.

So what can I do? While I’ve masked pretty much my whole life, I never knew what I was masking before my diagnosis. Notably, I didn’t really understand that the experience of other people was so different from mine. I thought they experienced the world and did things more or less the way I did, but for some reason they could manage it all a lot better than I could. Mostly I thought I was broken and I was trying to hide that truth from everyone. That’s what I was masking. But I had no idea what precisely was broken, so my efforts were at once all-encompassing and scattershot. I expended energy in all sorts of directions and spent every single second trying to keep up with … everything. Combine that with my cPTSD hypervigilance and simply existing each moment required enormous effort.

My ASD diagnosis provided an explanation and a framework. I could learn where my differences really were. I could perceive my efforts through that lens. I could better see the things that were helpful in certain situations and the things that weren’t. While I may not mask any less, I believe I do so more effectively today, in the ways and circumstances where it’s actually needed. I waste less energy randomly flailing.

I’m also working to be a little less demanding on myself. Over time in therapy I recognized the informal accommodations at work I had long negotiated, over which I worried every day, and about which I became highly stressed any time it was suggested they might change. In other words, they were never simply my preferred working conditions. They really were accommodations that had allowed me to be successful in my job. So I formally documented them as accommodations through our HR processes. Nothing changed in my actual working conditions, but it removed one source of worry and stress. It gave me one less thing to constantly manage.

I consciously find ways now to manage sources of sensory overload. For me, much of that is tied to vision with touch next on the list. I bought night driving glasses and they help a lot. And sometimes if the inside lights are bright I’ll keep my sunglasses on, ignoring the voice in my head screaming about it being “weird”. I mostly don’t wear clothing that isn’t comfortable anymore instead of forcing myself to endure it and pretend it doesn’t bother me. I wear my headphones even more openly and constantly now than I used to. It’s a bunch of small things, but in aggregate they help.

I carry a smooth, metal fidget spinner. The sensation of spinning it even in my pocket and letting it hit my fingers is soothing. And the smooth metal also has something like a worry stone feel. I notice more when parts of my body are moving and instead of automatically suppressing it every time, I manage or redirect the movements but still try to express it in some way. I allow myself to enjoy things like spinning or once again letting my body move to music. Agony Autie calls it “stim dancing” and that term really fits for me. It saved my life in the late 80s during a really bad time in my life, and I also seem to have a bit of auditory synesthesia. Especially when surrounded by it, I feel music on my skin and in my muscles. It’s hard to describe. And again, it’s only since my diagnosis that I’ve slowly understood it’s not really the same thing most people mean when they talking about “feeling the music”.

So I’m not working to mask less. I am trying to mask more effectively with less unnecessary drain on my resources. And I’m trying to be kinder to myself in different ways. I can mask and still reduce sensory overload and consciously allow myself to stim in ways that aren’t overtly autistic to those around me. And I can let myself respond without restraint when I’m alone. That’s really more of an aspiration right now than a reality. Controlling my appearance is far too deeply ingrained in my psyche for me to ever simply stop. But I’m trying to relax my guard a little at least.


Diagnosis and Masking – Week 5 of #TakeTheMaskOff

Posted: August 20th, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Diagnosis and Masking – Week 5 of #TakeTheMaskOff

What impact has my diagnosis had on my masking? That’s the question posed this week. For some reason my mind wanders to Robert Frost’s poem, The Road Not Taken. Most people know the poem only from inspirational and individualistic quotes about choosing the road others avoid and the difference that can make. That is not, of course, what the poem says at all. I’ll include it at the end for those who might like to read the entire thing. It has a whimsical quality and is full of twists and turns. In the present moment, our traveler is torn between two roads, equally fair, both perhaps worn the same, yet both untraveled that morning. It bounces back and forth down different avenues of observation and speculation in that indecisive moment. There’s a sense that whichever path is chosen there is certain to be at least some regret. The closing, most often quoted lines are not set in the present moment, though. The traveler recognizes that in some distant future they will look back, define the road they chose as the one less traveled, and build a story about how that choice made all the difference in their life.

Our stories are never simply recitations of fact. We are creatures who build narratives. Events in our lives have meaning to us because we imbue them with meaning. We connect them. We are not objective, outside observers. We are participants in the tales we tell. And the ways we choose to tell them shape ourselves and often those around us. The lightness of Frost’s poem carries within it our traveler’s awareness that they are in part a character in the story that will one day be told by a future and perhaps very different version of their own self. We exist in the now. We share a thread of continuity with the versions of ourselves we have been in the past and we trust that thread will be maintained by our future versions. But that future version will not be precisely us, right now in this moment, any more than we are the same as those different versions of ourselves in our past.

Moreover, our memories are not cameras. Even the experience of our senses, the data that informs what we think we know about the world around us, is heavily shaped and interpreted by our brains. The memories themselves collate and capture and often try to make sense of that information. They fill in the missing pieces. They drop things that don’t fit. They revise and reshape. Every single time we access a memory, it is read and written anew, as if it were a new memory. Frost is right. Even though in the present moment we perceive the roads as equal choices with little to distinguish them, in the future we will remember them as markedly different and imbue meaning into the choice we made.

How has my autism spectrum disorder diagnosis impacted my masking?

It has made all the difference. And none.

I can only speak as a late diagnosed autistic person who went from no awareness at all to assessment and diagnosis over a pretty short period of time in what felt like a whirlwind.

That event altered the narrative of my life by giving meaning to things I had felt were scattered and disconnected. It explained things I had never understood and which I had often tried to push to the edge of my consciousness. My diagnosis provided a framework I had lacked my entire life. It changed and is continuing to revise the story of Scott as I put the different pieces in place. It has given me access finally to perceive and hopefully work through things that are not directly related to autism. That may sound strange, but autism describes the way I experience … everything, including trauma. I have an autistic brain. That self-knowledge doesn’t just explain my autistic experience. As I work through my stories in that light, I can finally see and begin to understand all the other things as well.

For we are always creatures who tell stories, of all sorts, but most especially about ourselves. My stories have been shifting and changing. I’m aware of the process and it doesn’t bother me even though I understand it bothers many when it happens to them. I’ve been trying to piece together coherent narratives my entire life. I’ve never found them to be static or, for that matter, complete. And that means I can only write as the person I am now, remembering past events in light of the information I have in this moment, not as the person who actually experienced those events. I see my past masking so much more clearly now than I ever did when I was the person doing it in the moment.

I have little idea, really, who I am and what I want, beyond acceptance and love. I’ve striven for those two things from my earliest memories, with all my will and ability, and I’ve focused my efforts on discerning which things are acceptable to do, acceptable to want, and even acceptable to be. As I told my therapist, there are limits to acceptable deviation from cultural norms in behavior and interaction that most will accept. I’ve worked really, really hard to find a way to stay within those lines, or at least manage perceptions well enough so people mostly believe I do.

My diagnosis has given me the option to turn the accommodations I’ve long informally negotiated at work and over which I’ve incessantly worried into formal accommodations. That removes one source of stress. I’m somewhat more aware of my masking in the moment now and better manage my energy or take actions to reduce some stress. Diagnosis allows me to be more intentional in my efforts instead of flailing at everything.

I would not, however, say that I mask less in any situation or interaction. I think I’m better at some aspects of masking now and worse at others. Some things I’ve done worked better when I wasn’t really aware of them as I was doing them.

My diagnosis altered my whole world and cast all the stories of my life in a new light. That process is ongoing and touches every part of who I am. My diagnosis did not, however, change the world in which I live. It’s no more safe today to stray outside the boundaries of “normal” than it was when I was a child working diligently to fix myself. I do not feel any safer today than I did then.

I’m working on … everything. That’s really all I can say with any certainty.

 

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.


Autistic Burnout – Week 4 of #TakeTheMaskOff

Posted: August 13th, 2018 | Author: | Filed under: Autism | Tags: , | 2 Comments »

I don’t have one of my researched, informative posts on this week’s topic. Yes, I’ve read other accounts of autistic burnout. I can’t recall off-hand if I’ve read any formal research or not. I know in a way what I experienced personally, though I struggle to find words that truly capture how it felt. Moreover, it was so pervasive it often lurked at the edges of my awareness. I can also find threads of common experience in the stories of non-autistic people struggling with the ongoing effects of complex trauma, especially from childhood. I don’t think there’s a single explanation or underlying cause for my personal struggles. I believe it was the weight of everything finally becoming more than I could carry.

More people, I think, have heard of autistic meltdowns and shutdowns than autistic burnout. Those are the short term and often visible results of sensory overload and emotional dysregulation. I had both as a child. I mostly learned to control them because I had to do so. I found a way, even though one unintended consequence apparently involved disrupting my interoception much more than I ever understood, at least until it almost killed me last year. After my last major meltdown in adulthood at age 22 landed me in a psych ward over a weekend, controlling them became one of my driving imperatives in life. No, that’s not really accurate. I was driven to control it as a young child. It’s always been an imperative. That was the last time in my life I lost my battle against it. I’ve let the energy out at times, but only in controlled doses in private where nobody could see. And I never, ever let it take control. I’m aware that many, if not most, autistic people cannot manage the overload and dysregulation the way I do. I don’t really recommend my experience, but it has certainly made my life more manageable than it would otherwise be.

Autistic burnout, by contrast, is a long, slow process. For me, especially since I had no idea I was autistic, I had no explanation. Things I had always been able to do became harder over time. It’s not exactly regression, but some loss of skill accompanied it for me. I felt increasingly overwhelmed. I began to struggle to get through most days. I started becoming less capable and less functional. I tried anti-depressants. The one I tried turned the background sense of not wanting to be here or be alive I had managed since I was nine years old into full-blown suicidal ideation. I tried therapy, but it went nowhere. That was always my experience of therapy before I finally figured out I was autistic. I discovered I had sleep apnea and treatment for that gave me a burst of new energy for a couple of years. I discovered I had celiac disease and my body was in bad shape. Treating that improved my energy again for a few more years.

But none of those improvements lasted. I could manage less and less. Every day became harder and harder.

Autistic burnout felt like losing my ability to be a human being, at least in any way that held meaning for me.

I probably reached my lowest point in 2015. I realized how much it was impacting my family and used raw force of will to make myself do better. I’ve begun to realize these past two years just how strong my will can be. I stopped sinking, but couldn’t make much headway until my ASD diagnosis a year later. That finally gave me a framework, explanation, structure, and grounding from which I could work. Things that had never made any sense finally fit. It hasn’t been any sort of magic pill. Progress has been uncertain and slow. But I have finally been able to make progress.

I have some hope again for the first time in a very, very long time.

The ASD diagnosis also gave me the framework and insight to begin to perceive, understand, and work through the impact of toxic stress from my traumatic childhood. I’m barely beginning that work and it’s really hard. I can distinguish the dysregulation of emotional flashbacks from the autistic response I have to overload and that different sort of dysregulation now that I know both exist. They have a different … texture to them. My somatic response, now that I’m learning to pay attention to the signals from my body, is different with each. And only the former comes tinged with dissociation. Complex trauma was certainly a factor in my burnout, but most of it followed the course I’ve seen others describe with autistic burnout, especially the part about slowly losing the ability to do things I had long done.

Life got really, really hard even as the objective demands on me grew less. It made no sense. And that was perhaps the hardest part for me.