Is Anybody There? Does Anybody Care?

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.

US Christian Church Responses to COVID-19

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

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

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.

The Price of Passing

I don’t use the word passing lightly in this post. It’s a word that has surfaced and resurfaced in my consciousness now and again in the past two years since my diagnosis. The concept has a lengthy human history. In oppressive and dangerous contexts, some Jewish people passed as Christian to escape persecution. Women in many cultures have sometimes passed as men to gain the freedoms and privileges associated with that gender.

Passing has an especially painful racial history in the United States. That history reflects the grip white supremacy and brutal racial oppression have held and continue to hold across our country. Anyone unfamiliar with that history, especially those of us who are white, should educate ourselves. This NPR article, A Chosen Exile, is a good place to start.

Passing also has multiple meanings within the LGBTQIA+ community. That’s not especially surprising in a community formed at least as much from their shared experience of exclusion, marginalization, and oppression for their sexual or gender identity as from inherent, shared commonalities. This article explores passing in that context, but as with racial passing, many other sources are available online.

For autistic people, the definition of passing is, on the surface at least, a straightforward one. It means that non-autistic or allistic people do not perceive you as autistic. Now, that does not then imply they perceive you as normal, typical, or someone around whom they are entirely comfortable. Often that’s not the case as multiple studies are now confirming. I referenced one paper in my post, Fighting First Impressions. Another really good set of studies are discussed in this article exploring where communication breaks down between autistic and allistic people. Those judgments are made so quickly and with such minimal information that even with just a still picture accompanying our written words or a single second of video, we are rated more negatively. Unless you’ve lived a life in which you experienced that reaction every single day, in every context, from just about everyone, you can’t possibly understand what it feels like.

I love Amythest Schaber’s Ask an Autistic video series. Their videos helped me find and connect my lifelong autistic experience with what was to me a foreign and strange language surrounding autism. They have a video discussing autistic passing that creates a good starting point for discussion.

I don’t want to minimize or deny the extent to which things did improve for me after I taught myself to pass reasonably well as allistic. I experienced less violence, less verbal abuse, less ridicule, and was given more opportunity to demonstrate my competence and ability. I correctly understood some of the ways I presented differently from people around me. I worked out an organized way to improve things since my more haphazard efforts were failing miserably. I attacked what I perceived to be my problem with singular focus and tremendous effort. I think I would now label that my autistic will and focus, though I still find it difficult to describe that internal experience in words.

There’s no doubt in my mind that training myself to pass was a survival mechanism and my way of gaining some access to the benefits that flow from our participation in the complex social world in which we all live. I didn’t think it through in those terms as a child, though. I simply understood that I was broken and I had to find some way to fix myself. Moreover, however my rational adult mind might analyze my actions, nothing about that internalized childhood self-perception and the feelings associated with it has really changed. It’s all there every minute of every day.

I pass because it isn’t safe to do anything else. I’m not certain if that’s objectively true any longer, but the part of my brain that monitors and enforces my outward behavior is not really rational. That part of my mind doesn’t feel safe. It never feels safe. It has never felt safe. That part of my brain experiences every crack in my ‘normal’ mask as something approaching an existential threat.

That’s the first hurdle when people try to tell me I should “just be myself” but it’s certainly not the only one. I began trying to manage the reactions I received from others in haphazard ways from a very young age. Those efforts gradually grew more sophisticated over time. I began working to train myself in earnest and in increasingly planned and organized ways when I was 9 years old. I am now 53 years old. For all practical purposes, I have been working to pass, to make myself something close enough to normal, my entire life. When you have spent your whole life trying desperately to be acceptable to the people around you, in many ways that becomes your identity.

I sometimes have released some of my control and associated stress and tension when I am alone. I have rocked, repeated the same word or phrase over and over, hit my head against a wall or desk, shaken myself, let my mind spiral, and similar behaviors. However, those times don’t reflect some inner real me. They are simply one of the ways I’ve managed the constant stress of passing.

And that stress is real. There are multiple studies and a lot of data about increased autistic mortality, increased risk of suicide, increased substance abuse, and increased risk of other forms of breakdown or illness. The accumulated weight of decades of passing was certainly one factor behind my growing inability to handle life throughout my 40s. It was hardly the only factor. Ongoing stress reactions and disordered adjustments to traumatic experience were certainly also a major problem. But the constant and pervasive stress and effort associated with passing simultaneously drained my resources and amplified my experience, including my reactions to experiences my mind associated with trauma.

No version of some real, natural Scott, free from both trauma and the pressure to respond like those around me, exists. No such person has ever existed. I am always being myself, or at least the version of myself appropriate for a specific context. I’m being myself in the only way I’ve ever been at all. I need to work to process my trauma and heal my stress responses flowing from it when triggered. But that process won’t somehow restore me to some hypothetical self that has never truly existed.

I ran across a reference to that identity problem in a discussion of this talk (the second one) by Lexi Orchard. In that discussion of it here, it’s pointed out how passing is fundamentally a survival skill. Passing reduces painful encounters and grants access to social resources. Those resources range from at least some acceptance by others around you to pretty important things like employment. That description corresponds with my experience. I worked so hard to pass because on some level I felt that I had to learn how to hide my brokenness in order to survive. Toward the end of their talk, Lexi made a statement that really exposes a major impact of passing.

“If somebody says, ‘What do you want?’, my brain suddenly goes into this passing mode where I attempt to figure out what you want me to want.”

For most of us, this process occurs as we are developing. That means I didn’t develop an identity which I then learned to hide from the world. I developed an identity that revolved around finding ways to be perceived in at least minimally acceptable ways. I accepted I was never going to be fully included. Instead, I worked to avoid outright rejection, assault, and exclusion.

At one juncture, my couples therapist asked after I attempted to articulate my process if I was a “people-pleaser”. And that’s not really an accurate description. Of course, I do want to please my partner. I don’t want to only avoid rejection. I want to be loved. But outside that context, I largely don’t care if others are “pleased” with me or not. I am, however, always driven to ensure my responses and reactions are close enough to “typical” ones that they don’t stand out too much. In a given context, what sorts of things are okay for me to want?

My individual therapist has asked if maybe that’s ultimately the thing that becomes an issue in every friendship I’ve tried to build. At some point, people sense, though perhaps not consciously, that there’s a part of me that’s hidden from them. Those same tools that provide me access to the social world and its benefits become a roadblock to deeper relationships. I’m not sure if that’s really accurate or not, but it’s a pretty compelling working hypothesis.

So I had that in mind when I stumbled across this “belated apology” by a transgender woman the other day. I’ve passed my whole life as allistic and not as a different gender, but there was still a lot in the post that rang true for me. From my perspective, I’ve performed normal. I’ve performed it so well I’ve often mostly convinced myself the performance was reality. I’ve minimized, dismissed, and even put much of the hard work I did to make myself pass out of my mind. I’m the only person who knows my internal experience and the enormous, ongoing effort I’ve poured into performing normal. I’m the only person who sees that child who long ago decided he was broken. I’m the only one who knows the many, many different ways I’ve restrained my behavior, navigated social situations through a complex set of tools, managed sensory input, and mostly avoided uncontrolled meltdowns.

I am still me.

But I’ve never let anyone, even myself, really see that person.

Ultimately, that’s the real price of allistic passing. Your allistic performances become the only version of you that others see and know. It may to some extent be the only version of you that you let yourself see. Nevertheless the autistic you is always there, mostly unseen and unacknowledged inside the masks. And if you ever try to reveal that hidden self, so different in some ways from your performative self, people feel deceived.

But I was never trying to lie to anyone. I was trying to survive in a world that mostly didn’t want me in it.

I’ll conclude by sharing the Ask an Autistic! video on neurodiversity. I would like to live in a world where at least some space was made for people like me. I don’t know how to create such a world, but it seems better than the one we have today.

Childhood – Just Get Over It?

The things that happened in childhood are all in the past, for some of us the ancient past, right? We just need to put it behind us, focus on the present and future. We can’t change the past. We need to direct our mind toward the things we can do now. On some level, the underlying, relentless mantra is a simple one: Just get over it.

Don’t be a victim. Don’t let it control you. Don’t let it define you.

Don’t be weak.

I know those messages well. They are the air we all breathe every day. I absorbed them. They became my mantra. And they fit in a way. From my earliest life, I always picked myself up, worked to figure out what when wrong, and tried again. That make it sounds more organized and rational than I’ve ever been. Nevertheless, I’ve always had a relentless will. Somehow, even during my worst experiences, I found a way through. I found a way to get back up. I wouldn’t say I found some mythical best way. But I got through it and began moving forward again. Often it involved simply taking the next step. And then the one after it. And then another until I could take that next step without intense focus and effort.

There’s an exercise I hear people doing all the time in many settings and contexts. An adult reflects on the wisdom or encouragement they would share with some version of their child self. I’m not sure what they gain from that exercise, but the fact that so many do it means it has some widely shared value to people.

Whatever it does for most people, I don’t share their experience. When I gather my scattered childhood memories and reflect on what that child version of Scott was experiencing and how he was responding to it, I have no advice or encouragement I would share. I feel and see how determined, resourceful, and strong he was. And I feel how alone he felt, but kept trying again and again and again to find and connect with others.

In the face of young Scott’s effort and will, if anything I feel weak. I tried to keep putting the past, my reactions, my failures, and the things I experienced behind me. I’ve focused on the now. I’ve gotten through each day. And I’ve accomplished a great deal by most measures. But as I moved into my 40s, I began to be increasingly overwhelmed by life every single day. Undiagnosed sleep apnea and celiac disease made things worse, but addressing those gave me no more than a short term bump in resources and energy.

I’m good to have around in a crisis. People have even told me as much. I don’t get thrown into emotional and mental disarray. I begin focusing on the things that need to be done. I constantly assess the situation and change tracks when needed. But I maintain my equilibrium in no small part because I live every moment of my life physically and mentally prepared for the next crisis, whatever it might be. I live each and every moment of my life in a form of crisis mode. Over the course of decades, it seems that such constant vigilance exacts a price.

The Centers for Disease Control and Prevention (CDC) have been studying and treating adverse childhood experiences as a national health problem since the 1990s. I stumbled across that work through an NPR story, Take The ACE Quiz — And Learn What It Does And Doesn’t Mean. I took the quiz on impulse before reading the article and it ended with a screen displaying the number ‘9’ without context or explanation. I then went back and read the article and found the CDC page on Adverse Childhood Experiences (ACE).

The study focuses on 10 comparatively common adverse childhood experiences and their impact on the health and well-being of people throughout their lives. My score of 9 means I experienced 9 out of the 10 they include at some point in my childhood. The list captures some of the more common shared experiences, not all the adverse experiences a child might have. I can easily expand that list with other childhood experiences from my personal life that were also very challenging.

The CDC studies ACEs and how to improve outcomes because as the list of ACEs a child endures grows, so does the list of negative health and well-being outcomes throughout their life. There’s a strong correlation between the two. In many ways, it’s a national health crisis in the United States, and one that’s almost invisible to most people.

That makes sense. We are beginning to understand how our environment creates epigenetic changes that alter the ways genes are expressed. One effect of severe or chronic childhood stress is that the gene for the glucocorticoid receptor becomes inactive, disrupting feedback inhibition. Stress hormones continually flood the system. That matches my lived experience; I’m hypervigilant and always living in a type of crisis mode. It’s means I’m useful when an actual crisis does occur. But it also means I experience normal disruptions that aren’t objectively all that major as if they were an existential crisis.

Moreover, those experiences seem to be somehow stored in my body. It’s a struggle to let myself feel much at all without being overwhelmed by tidal waves of emotions unrelated to my present condition or stronger than current events explain. My muscles are always tight, protective, and ready to respond. Based on my stiffness and soreness when I wake up and get out of bed, they don’t seem to relax much even when I sleep. My interoception, the awareness of my body, its state, and how it feels, is extremely poor.

It would be nice if I could somehow ‘just get over’ my childhood experiences. I’ve certainly tried to put it all behind me my entire life. Unfortunately, that’s easier said than done. I’m trying to recognize and believe that I’m not weak, that I’m really very strong. I’m trying to believe I can be loved, that I don’t deserve to be rejected. But again, that’s easier said than done. I’m trying to tell myself I’m safe, but I never feel safe.

I would love to ‘get over’ the past. But that’s hard when the past has written itself in my body. Mind over matter creates a false dichotomy. After all, my mind is itself formed of matter. My brain is part of my whole body and all its component parts interact and shape each other every single moment of my life. I am my body. That has always been true and will always be true.

‘Just get over it‘ is a condemnation and judgment lodged against every human being who might deeply desire to do precisely that, but fails again and again.

Trauma – What’s in a Word?

I know I’ve only been posting intermittently since 2012. There’s been a slight uptick in the frequency of my posts since I was diagnosed with autism spectrum disorder in 2016, but I still haven’t published thoughts as frequently as I did for some years. I’ve also been commenting less on other blogs during that same time period. The reasons are both complicated and ones I can’t really claim to fully understand myself.

I’ve always been more bemused than anything else that some people seem drawn to my words. I’ve been equally bemused by the number of different people over the years, most recently including my therapist, who have told me in all seriousness that I should write a book. Every person has envisioned a different book I should write, which makes it even stranger to me. I can’t even explain why I’ve never felt a desire to seek any form of publication. It’s not like the process of being a writer is somehow foreign to me. Both my parents as well as other family members and family friends have been published in a variety of contexts. One of my good childhood memories is attending a massive American Booksellers Association convention in Atlanta in the 1970s at which my parents had a booth.

Maybe that’s part of the problem. One of my mother’s books began as her first Master’s thesis. She didn’t finish that degree, but self-published the thesis as a book later. (My parents had their own small press publishing company and book store for a few years when I was a child.) Later, she updated and expanded the book and the revised version was published by a university press. I don’t recall the details of its republication, but I believe it may have been after she had completed her Master’s in Art Therapy. I know the book was used in some classes around the country. It’s an insightful book in many ways.

The title of my mother’s book is Just This Side of Madness: Creativity and the Drive to Create. I think of the different writers and other creative people, familial and otherwise, that inhabit my childhood memories and I find little reason to dispute the thesis developed in the book, though it’s been many years now since I last read it. Those truths shaped one of many ways my childhood was … challenging.

I do not deny my own creative drive. It’s present and strong. And that creative energy and will form part of the reason I’ve been so successful in my career. Whether it’s writing an end-user application or the sort of deeper, less visible IT design work I do these days, on a very basic level I have to envision something which does not currently exist and work out the means to bring it into reality. That’s the part of my work I enjoy; the rest is often drudgery.

I mostly think in words. I don’t remember a time when I could not read. I can’t really even remember a time I didn’t read on an adult level, which is odd in a way I’ve never been able to describe. I read and could comprehend the denotations of the words, but I lacked the experience and more developed, nuanced understanding of an adult. In many ways, my writing is a window into my mind. It reveals my thoughts at a particular time in a particular context.

When I began to  be so overwhelmed that it robbed me to some extent of my words, that was at once an expression of my inner turmoil and an agent of that same turmoil. It’s not only my public writing that slowed. Outside the context of work, I began struggling to write at all. My thoughts were chaotic which meant my words, which have flowed my entire life, were increasingly difficult to hold.

My thoughts are my words and my words are my thoughts. As I struggle to write, so I struggle to think clearly.

Some words are harder and more slippery than others. Trauma seems to be such a word.

My childhood and early adult life were challenging. On a cognitive level, that truth has always been undeniable. However much I may have minimized or dismissed my experience, the reactions of other people when I revealed even small snippets have always shredded those attempts on my part. One problem, though, is the cognitive part of my brain is not where the effects of those experiences are mostly stored. In fact, they are hardly there at all. I’ve always struggled to think of them in any vaguely coherent way.

A family member recently described their experience of recently discovering gaps and holes in their memories. They found it distressing on something of an existential level and asked questions I found intriguing, “If I’m not the sum of my memories then what am I? And if I am that sum, but parts of me can vanish, what then?”

It’s not so much that I sought answers to those questions, it’s the premise and experience of life that allowed them to be asked which caught my attention. There’s no point in my life when it would have even occurred to me to ask them. My memories and associated experiences, especially throughout childhood, are defined more by their isolation from each other than by any sense of connection. The gaps and holes in my memory combined with the jumbled nature of so many of the ones I do have together feel more like the shards of a shattered mirror in the fragments of which I can see pieces of my reflection.

The gaps and holes even have different textures to me. In some memories I’m aware that there are people and things present somewhere that are absent from the memory. Other memories are fuzzy and almost staticky with elements fading in and out. Others are jumbled and chaotic. They are hard to piece together and decipher. There are some where I have tiny pieces and I even know they created internalized negative reactions that sometimes went on for years, but I can’t quite put things together. It’s like it’s a flicker at the edge of my vision. And then there are places that are just … gone, even the shards are missing from my pile of fragments.

Mostly I’m the ‘me’ experiencing this moment. I have some sense of continuity, of a shared life, with past versions of ‘me’, though the farther back in the past I go, the more distant and different that ‘me’ becomes from my current experience. My past created the circumstances in which I currently exist, so in many ways it shapes and forms me, but the sum of my memories? No, that requires a more linear and ordered collection of memories than I’ve ever had available.

My diagnosis was the key that is gradually unlocking my experience. Autism explained so much about my life that had never made sense before, whichever way I had viewed it or tried to fit things together. But as I peel back those layers, they’ve been exposing the things that get left behind, that aren’t explained, at least not in whole, by autism. And I have a lot of those.

Many of those things, it seems, are better explained by my experience and reaction to complex trauma, as colored and shaped through the lens of my autistic experience. That recognition has been a long, slow process. I can’t explain why, but in many ways it’s been much more of a struggle than internalizing and processing my autistic experience.

My therapist has other people she wants me see and things she wants me to try. I’ll tackle them and do my best. The people I love need me to be a healthier, better person. Everyone keeps telling me I should do things for myself because those things help me, and I guess I understand their point. But my own needs, whatever they may be, do not give me the drive, focus, and motivation I require right now. The needs of those who depend on me do.

Trauma is a hard word. It doesn’t let you hide.

But it’s harder for me to hide these days anyway. I’m pretty certain I still feel a lot less (or at least identify fewer feelings, which is similar) than most people. But by my standards, my feelings are nearer the surface, more accessible, and more raw than they’ve been most of my life. And it’s not the things I feel in the moment that are often overwhelming. Time and again, feelings that are unrelated or out of proportion to anything in the present moment well up and threaten to overwhelm me. My memories of the things that happen when that’s the case are, at best, jumbled and chaotic. They are similar in texture and feeling to so many of my childhood memories.

I believe that’s similar in some ways to the experience sometimes described as being ‘triggered’. In my case, no visual experiences accompany the experience as you often find described with PTSD and as I’ve witnessed personally with different family members over the course of my life. But I feel as I did in those past situations, without actually remembering any situation, and it effects me in every way as though my emotions and body were experiencing it again.

In many ways, my body has never left its past experience behind. I find my muscles are often tense and prepared, so much so that things will sometimes hurt with no explanation. At the same time, my interoception is so poor, I nearly died last year. And while I thought of myself as “calm and relaxed” my whole life and had taught myself a presentation that created something of that impression, I’ve gradually become aware that my default state is not just ‘anxiety’ but outright fear. My body lives in a state expecting the worst at any moment. If my interoception were better, I’m beginning to wonder how often I would be paralyzed by a form of panic attack.

I’m surprised each day by how hard the present situation in my country is for me to bear. It hasn’t gotten significantly better since the election. And I did not expect that to happen nor does it make any rational sense at all. I wasn’t surprised by the election results as so many others were. I have relatively few delusions about our country and the campaign process had long stripped any I might have retained. I’m also an older white male. I’m in just about as ‘safe’ a demographic as one can be in our country today, though being autistic makes me less safe if things do get as bad as they could. Still, I’m not really visibly autistic, so even the worst case risk is not that great. I expected my role would be to speak, vote, donate, and support those at greater risk than me.

Instead, the callous disregard for the humanity of others, the mocking of disabled people, the sexual assault even of children, and the recognition that so many people were at least okay with all that and more … created a reaction I can’t really describe. I was already struggling with my thoughts and that became more challenging. Emotions well up from nowhere, even in completely neutral and relatively emotion free contexts. And my ability to both write and read for pleasure withered further than they ever have in my life. I have no explanation for my reaction. It makes no sense and I’m aware it makes no sense. Nevertheless, I live with the experience of it every day and I have no true idea why.

Trauma is a painful word. It hurts to live and breathe at times.

Many of the things I read about trauma describe restoring a person to the healthier version of themselves they were before. It’s about integrating the experiences into the narrative of their lives. But what if there’s no ‘before’? I’m probably the closest I’ve been to ‘healthy and integrated’ in my whole life today. I was handed the tiles of a shattered mosaic from the outset with no idea what the picture should even look like.

I’m writing less because words are a struggle right now. They often have been when I speak, but rarely when I write.

I need to find my words. It seems increasingly likely that trauma is the word within which they are hidden.

I Can Only Imagine

Content warning: Discussion of abuse

I was spending time in a bookstore recently. Bookstores and libraries have been my personal havens my entire life. I wander through sections and stop to read parts of books. I loved it when many started serving coffee as well. I saw a display of different books of poetry and one with a jellyfish on the cover caught my eye. I picked it up and looked through it randomly. The page on when I stopped had the following.

Let’s be frank — there are times it feels the whole world is falling apart. You cannot compare your pain to others’ so why respond with “Someone else has it worse?”

Pain is immeasurable when it’s felt because in that moment it feels like the worst pain on earth.

The book of poetry and prose is Pillow Thoughts by Courtney Peppernell. The back of it says, “Make a cup of tea and let yourself feel.”

My whole life, I’ve found my words in books. It doesn’t surprise me when I do; it’s what I expect. I took the book, got a cup of coffee, shared my initial deep reaction online, and read a bit more. I had decided I was buying the book as soon as I saw that page, but I sat and read and let myself feel, something I rarely do.

That pillow thought captures the soul of an idea I’ve tried to express myself.

The worst abuse you have experienced is precisely that — the worst.

I keep repeating that for two reasons. I know when people hear some of the details of my life, there are those who use it to minimize their own experience because “theirs wasn’t that bad.” I’ve heard some people in my personal life say it out loud, but I’m deeply familiar with the tendency because I do it myself. I point to the stories that are different from mine in some way and I label those “worse” to minimize and dismiss my own experience. Even though many of us seem to do it, that narrative is a false one. Trauma is trauma. There is no scale on which it can be weighed or measured. And abused children, in particular, have lived lives shaped in no small part by trauma.

I want to keep that idea clearly in mind as I discuss some aspects of my reaction to the biographical film, I Can Only Imagine, about the early life of Bart Millard, the lead singer of MercyMe. MercyMe is one of my wife’s favorite bands and we learned about the movie at a recent sold-out concert for which I found tickets. I watched for and bought tickets to an early release of the movie. Personally, I remember the deep chord their first hit song, toward which the movie of the same title builds, struck with me. The movie reveals some of the emotions behind the song that likely made it resonate with me. Obviously many other people had a similar reaction to it at the time. I enjoy their music, but I enjoy all sorts of music if done well. I wouldn’t call them a favorite of mine, but I had fun at the concert despite the crowds and bright lights in my face at various points. I draw a great deal of joy in life by facilitating and participating in things that bring happiness to the people I love.

A book I’m working through in therapy, The Body Keeps the Score by Bessel van der Kolk, M.D., describes the particular challenge trauma victims experience creating a narrative that places their trauma in some sort of context and, most importantly, in the past. Trauma victims in general, and abused children in particular, tend to be overtaken by memories, by experiences, by reactions, and even when the memories are distanced or repressed, their brains and bodies retain them. The experience of trauma is always present. In a sense, it’s a part of the air we live and breathe. It forms and shapes the world in which we move.

This movie shows us the narrative Bart has built for his trauma. As such it is deeply personal and very brave. I want to honor that truth. I don’t know that I have a good narrative myself, though I’m working on it. I can see how I’ve worked on different ones my whole life, but most have melted over time in the forge of my experience. I keep trying to build new ones and I have maintained enough of a narrative that I’ve been able to function and live. But it’s been a struggle my whole life and is no less a struggle today. I am genuinely happy for every abused child who has found a path through that darkness. I say that without caveat or reservation.

I also could not do what Bart’s done and share that narrative with the world. People may believe that I’m open online, in groups, or one on one, but I’m not really. Everything I share is heavily edited, shaped, and carefully managed. I just happen to have had the sort of life from which I can tell small, edited pieces and it sounds worse or more dramatic than most people expect. And so the things I say are often heard as the raw, unvarnished truth, even though that’s not the case. And it’s not only that I don’t share everything with others, even the people closest to me. I keep a lot of it from myself as well, tucked carefully away, and only experience it when life forces me into a place that impinges on it and brings it back. I can share specific things at certain times and in particular contexts, but even the thought of trying to place my story on a screen or in a book for everyone or even any one person to see terrifies me.

If you were an abused child, this movie will almost certainly be hard to watch. It includes many scenes of physical and emotional abuse. The movie also shows how those experiences constantly replay in Bart’s head as a teen and young adult and how events cause those memories to overtake and overwhelm him at times. It shows at least a few of the ways his experiences played out in self-destructive behavior and actions that hurt people who loved him and whom he loved. I watched the movie within a sense of unreality or hyper-reality. I don’t really have words to describe the experience, but it’s the same mental and physical sensation I experience in times of crisis or when something pushes me toward those places I normally keep hidden and put away. I started shoving my emotions away and severing my always unreliable connections to them. I suppose the technical term is dissociation. I found myself wiping away tears with no idea what was causing them at seemingly random points in the movie.

I cannot comment on the technical merits of the film. As an actor and writer (though neither professionally), I usually have thoughts and reactions on both with any performance. I can’t do that with this movie. Even though none of the details of Bart’s story were at all similar to my life, the visceral experience thrust me into my own world of pain. I can’t comment on whether or not it was a good film. I can’t critique the individual performances. I don’t know how strong the writing was. I can only say that from my reaction, I believe the movie did a pretty credible job portraying the experience and effect of childhood abuse and abandonment. It took me a few moments to reach a point where I could speak after it ended. Fortunately, we saw a couple we knew as we were leaving the theater and my wife chatted a lot with them while I smiled and nodded most of the way back to the car. By then, I had begun to gather myself and could use my words again, at least a little.

The basic narrative of the film is a straightforward one. The actor portraying Bart even verbalizes it near the end. Bart’s father was a monster who came to know Jesus late in life and was transformed into the Dad for whom the child had always longed.

That narrative itself is reductionist, but it tends to be the only sort of narrative white evangelical Christianity allows. And that truth lies at the heart of my personal reaction to the movie. The only reason Bart’s story can be told in an evangelical film and embraced by an evangelical audience is that it happens to fall within the bounds that evangelical Christianity attempts to place on human experience. I don’t dispute the truth of Bart’s experience. I applaud his bravery and honesty. And I am genuinely happy that he found a narrative, that he has healed and is healing, and that his father finally found some measure of peace before the end of his story.

But much, and I would even venture to say most human experience, especially for those of us who have lived lives shaped by trauma and abuse, falls outside the narrow confines of the evangelical narrative. I want to emphasize that those stories do not fall outside the boundaries of the larger Christian narrative. Anyone who has explored my blog might understand some of the reasons I continue to call myself a Christian. I draw incredible hope, in particular, from the Incarnation, from a God of love, which can only be expressed in united community, joining their nature with ours. Evangelicalism is, in that broader context, a truncated and stunted expression of Christianity.

It’s not always, or even usually, those “non-Christians” who do monstrous things and shape themselves into monsters. The monsters, especially in our culture, are often Christian. And no, they aren’t “fake” Christians. They aren’t only publicly recognized. They are often privately zealous and many truly help some people tremendously even as they destroy others. Human beings are complicated in that way. The dividing line between monster and saint runs through every single heart every single day of our lives. I’m glad that at the end of his life, facing terminal cancer, Bart’s father was able to finally become the man and the father he had likely always longed to be. Most people never change that dramatically or can’t sustain the change. We should treasure the stories of those who do. But we value those stories precisely because they are the exception and not the rule.

I’m glad Bart found his narrative, experienced redemption with his father, and was able to share his story with us. I’m frustrated that his story is the only sort of story evangelical Christianity allows.

Living With Autism

“What’s it like living with autism?”

It’s a question that’s often posed in publications, interviews, and news shows. On the surface, it looks like a question seeking understanding, but the context often belies that sense.

When I read or hear everything surrounding the question, the focus of the questioner is often on how the autistic person deals with the “burden” of autism or how they “overcome” it.  Sometimes it revolves around how much the autistic person does or doesn’t appear to act or speak like the questioner. The question carries with it an externalization of autism, as though it’s something imposed on top of a person’s experience of the world.

And with all of that comes an almost unconscious sense of condescension from the questioner – how awful it must be that autism keeps you from being like me.

“What’s it like to be so different?”

I perceive and experience the world through an autistic lens. I think and react in ways that are shaped by my autistic brain. It’s the only experience I know and the only one I’ve ever known.

I don’t “live with autism” other than in the sense that I live. I might as well ask you what it’s like living without autism?

It is true that I have experienced some pretty awful things in my life, and some of those I might not have experienced if I hadn’t been autistic. But those experiences were not caused by autism. People rejected and hurt me because I was different. Others saw that I was vulnerable and exploited or abused me.

I didn’t “live with autism” so much as I “lived with or among non-autistic people.” And collectively, human beings can be pretty horrible to people who are different or vulnerable.

My monsters were never imaginary. They were all too real.

However much I tried to meet the demands placed on me from living among people unlike me and however close I came to emulating their behavior, it was never enough.

The way I think, experience the world, and perceive reality is not something I “live with”. It’s who I am. I have spent my life “living with” an often hostile and frequently dangerous world of people who have more often rejected my place among them than accepted me.

And perhaps that would have been easier to handle if I didn’t care so much and so deeply. I’m vulnerable, at least in part, because I care.

There is one thing I wish non-autistic people could hear clearly and loudly.

I don’t live with autism.

I live with you.

What? Me Anxious!?!

My wife has commented that I never spoke about anxiety or being anxious before I was diagnosed. And she’s right, but it’s been an ongoing challenge to untangle and understand the reasons why that’s true. In part, the self-conception I’ve developed over the years and which I work hard to portray reflects more the goal of my performance than my reality. I’ve worked hard to appear flexible and easy-going, but that requires that I constantly manage the tension I feel when things do change or the unexpected happens. So I’ve developed an outwardly calm demeanor that more or less works. Family members, in particular, often see through it, but it generally seems more effective than not.

As I continue to discover what alexithymia is and how it operates for me within my personal experience, I also see that I can sometimes simply pick an emotional label for a given physical state whether or not it’s the correct label. Many years ago, I think I subconsciously decided the way my body and mind feel most of the time when nothing significant is occurring should be labeled ‘calm and relaxed‘. When I’m in that state, I’m ‘fine‘ by my standards. The key thought is ‘by my standards‘ since that’s the only perspective I truly knew. The discovery that my norms are often very different from the things most people consider typical has been an ongoing part of my process of learning what it really means for me to be autistic.

I have a number of family members who do struggle with anxiety. And it can spike and interfere with their functioning. They sometimes need medication or space to breathe to prevent it from overwhelming them. I thought I understood what they were experiencing, but I now see I was interpreting it through the lens of my own experience and not theirs. The wave of physical and mental internal experience I believed they were battling I equated to things I experienced which I now understand are better labeled ‘meltdown’, ‘sensory overwhelm’, or ‘shutdown’. A few times in my life, I’ve been so overwhelmed by the mental and physical barrage the result was much more severe than a meltdown, but did not result in a shutdown. From later descriptions I was given they resembled some sort of dissociative state. My body did not protectively cease active functioning as it more or less does in a true shutdown, but my mind was no longer truly processing anything coherently. Those were meltdowns on steroids that should have been full shutdowns, but for some reason weren’t.

The last such instance, when I was 22 years old, caused my neighbors at the time to call 911 out of concern and led to an involuntary admission to a psychiatric hospital. When I recovered, I went with the simplest solution they proposed (a suicide attempt) and followed all their protocols to quickly get released and off their radar again. I’m not unintelligent and I can be somewhat good at working systems when I am forced to do so. I’ve worked to never reach that point again and to date I’ve been successful.

It’s only when I was diagnosed and was able to relate my personal experiences to the more appropriate autistic terms that I was truly able to hear and process the physical and mental states most people equate with anxiety. They describe a tightening in their chest and an increased heart rate. They have a heightened awareness of their environment and a sense that everything is pressing on them. Perhaps their breathing becomes shorter or more rapid. They feel like they aren’t getting enough oxygen. Their mind starts racing. They freeze and can’t speak or move. Basically, it’s all the symptoms associated with a heightened amygdala fight, flight, or freeze response and more.

But those descriptive physical and mental reactions more or less describe my typical state, the one I had labeled ‘calm and relaxed‘. It spikes every time I have to confront a change or anything unanticipated and manage my reaction. At times sensory input starts to feel more overwhelming or changes suddenly and I have to pull things back under control. It spikes when I’m entering a new group or new situation, so I always have to breathe and adapt. Heck, things spike when I have to make a silly phone call. The sensations spike hard when I sense an interaction going wrong or when I’m suddenly confronted with the reality that it already has. I’ve discussed the racing thoughts with my therapist and they apparently aren’t the same sort of catastrophizing most people experience with anxiety. Instead, I’m either predicting or forecasting things that actually can and often do go wrong based on my own now extensive past experience or I’m stuck cycling through an encounter that did go wrong, especially when I can’t figure out how or why it went badly. That sort of state is again more or less a part of my ‘normal‘. As long as I have things under control and it’s not a meltdown or shutdown, I’m ‘fine‘ by my standards.

And so I came to understand that the correct emotional label for the way I usually feel is ‘anxious‘ and not ‘calm‘. In fact, when I pay close attention to the way people describe anxiety as it is expressed in their body and mind, I realize that my ‘normal‘ would be experienced as an at least somewhat debilitating attack of anxiety by most people. The sensations accompanying my ‘minor‘ routine spikes during any typical day would often be experienced as actual panic attacks by most people, at least if I’ve understood their descriptions correctly. And the things that are truly overwhelming and debilitating for me seem to lie beyond the experience and comprehension of almost anyone who is not also autistic.

So it’s not that anything changed with my physical or emotional state after I was diagnosed. Rather, I realized I was using the wrong emotion word and began using the correct one instead. I always knew my mind worked differently than people around me. Everyone has always been aware that I don’t act or react the same way as most people. But I never realized I actually experience and process the world around me differently than most people do. I related the words they used for their experience of the world to my experience and often used the wrong word or was harder on myself than I should have been. That’s the part of being autistic so many people don’t seem to grasp. This is the only way I’ve ever experienced reality. I have no basis or standard for comparison. The non-autistic experience is as foreign to me as I’m sure my experience is to most other people. Until I work it out through the process of deduction and elimination, I don’t even know what’s different in our experience and what is similar.

Some of the differences between allistic and autistic experience are actually differences in our metaphorical knobs being tuned differently. I was discussing repetitive movements with my therapist and the soothing and calming effect they have. They aren’t involuntary tics, nor are they compulsions in a clinical sense. They are, however, powerful and it requires an act of will to modify or suppress them. But the sorts of things we label repetitive movements are largely not exclusive to autistic or even neurodivergent people. As my therapist noted, everyone uses them and they have the same calming or soothing effect for all people. Twisting hair, tapping fingers, chewing pens, rocking under stress and a host of other repetitive movements are common for every human being. It’s the frequency, intensity, exaggerated range, and sometimes uncommon nature of autistic repetitive movements that stand out. But when you recognize that our ‘resting’ physical and mental state and our ‘normal’ sensory experience of the world around us would likely be considered debilitating by many allistic people, the greater frequency and intensity of soothing movements makes perfect sense. We need more calming and soothing action simply to function.

So yes, I’m anxious, pretty much all the time. I just didn’t know that’s what I was supposed to call it.