Finding freedom

Embracing of what I used to find unacceptable

image © the author

It's been a long time since I have written anything. In the months since I've posted, life has changed a lot for us. A few days after I wrote about my daughter's experience with burnout, school started. My daughter went to the first day of second grade, and wouldn't go back. That one day of school worsened the symptoms of burnout that we had been seeing - she spent weeks in bed, playing Roblox and Minecraft, and watching YouTube videos of other people playing Roblox and Minecraft. She became enraged at the smallest things, continued to be unable to meet her basic needs (bathing, teeth brushing, eating). It was scary. The medical system was not helpful. I knew this to be true, but I was reminded of the fact that sometimes when doctors don't know what's happening, they might ignore it, or misidentify it with an unhelpful label. They try to put each patient into one of the known diagnostic boxes, prescribe the known treatment, and move on. What happens when the known treatments don't work, or when the symptoms lie outside the descriptions of the DSM?

There are many parents, and a number of advocates, and a smaller number of health care professionals, who are trying provide help and resources for families with experiences like ours. We were lucky to find a neuropsychologist locally who has a deep understanding of how autism presents in girls, and who is familiar with PDA. We now have a diagnosis - autism, PDA, and autistic burnout. It's what we suspected, but somehow having the diagnosis feels validating. Despite all of the problems with how we diagnose mental health in the US and how many disagreements I have with the system, a diagnosis still reassures us that we're not just imagining things, that we're not just "doing it wrong", and that we really do need to take a different approach to parenting to meet our daughter's needs and help her thrive. It has also helped us connect with other people who have shared experiences and start to build an understanding community for our daughter.

A big part of me wishes the diagnosis wasn't necessary, that I didn't feel the need to seek it for myself or my daughter, and that the systems of our society didn't require kids who respond to the world differently to be labeled. But when our psychiatrist suggested hospitalization as a potential next step for us to consider, and when the school suggested they would have to notify the county if our daughter didn't start attending more regularly (despite her clear disability), it became obvious that we had to have a diagnosis from a provider who understood what was happening simply to defend our ability to parent our daughter in the way she needs. It also became clear that we needed to unenroll from school and learn about homeschooling.

For for the past few months, PDA and "unschooling" (a term I put in quotes because I found it so odd when I came across it) have been my special interests and I have gone deep into learning and connecting with other parents. The good news is there are some amazing communities of parents and other caregivers who are eager to connect and share what they have learned and what works for them. For me, the most important aspect of healing has been acceptance of how things are, which includes a rejection of the pathologization that our society is so eager to apply. I thought I had already done this when I went through my diagnostic process and the connections I made with the adult autistic community. What my experience with my daughter has shown me is how much more work I have to do and how inured our society is with the tendency to pathologize, label, isolate, and try to "fix" people who resist, or reject, or illustrate flaws with the status quo. And when people resist more, or move into advocacy, we label them as fringe weird people. When I write this, I'm referring to myself - I pathologized, I labeled, I thought that people who questioned our accepted approaches were the kind of people I should try to avoid. Even though I myself have always operated somewhat outside of conventional social norms, I've also generally adhered to the more foundational societal norms (for example, kids need to go to school, even if they don't like it, because some horrible thing will probably happen if they don't). What I'm realizing now is that I have become one of the people I used to stigmatize!

Acknowledging my own tendencies to comply, seeing how much I am influenced by the messages that surround me, and accepting that what our family needs, means that we are taking what looks like a radically different approach to living our lives. This has been a level of acceptance that I have never experienced or even contemplated before. And, it's wonderful. The biggest change I've experienced in the past few months has been my change in perspective. My acceptance of things that I thought were unacceptable. My embracing of ideas that I used to find scary or unimaginable. As I have been going on this emotional and philosophical journey, our daughter has been showing so many signs that she will be just fine. She needs time to recover, and we all need time to learn how to shape our lives so that burnout doesn't become a regularly occurring feature. And, we have plenty of time. That has been a revelation for me. Despite all the rush, and stress, and frenzy of the world, we actually have plenty of time.

Some of the perspective shifts that I have had since September: Not all kids need to learn how to read (or memorize their times tables) by a particular age; school (or even teaching) is not required for kids to learn; every kid has a different way of learning, growing, and being, and it's OK to let our kid explore the world in a way that feels safe and manageable for them. In other words, nothing terrible will happen if our daughter isn't enrolled in a conventional school, taking standardized tests, and "keeping up" with the standards that attempt to measure every kid as if they are not all unique individuals. My first reaction when our daughter went into burnout (and when it became clear she would be there for a while) was to think that this was a terrible thing. But now I'm looking at it so differently - I am grateful for the awakening it has given me. It fees liberating for our whole family to chart our own path. And I am so excited for all the exploration and adventures that my daughter will experience on her journey.

Coming to terms with disability

The interaction between individuals and their environment

As someone with multiple conditions that can be disabling at times, I would think it would be easy for me to wrap my head around the concept of disability. But I find I struggle with the idea of "disability" both when I think of myself and now when I experience it in my daughter. I have to remind myself that disability is relative to the norms and expectations of society. I appreciate the World Health Organization description of the term:

"Disability results from the interaction between individuals with a health condition... with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support."¹

Disability comes from the interaction between individuals and their environment. If my daughter can't do the things that are typically expected of a child her age, is it a reflection of her ability or is it a reflection of a flawed societal expectation? I used to hope I would never have to ponder this question. I've learned slowly that it's easier for me to get on with life if I follow the norms than if I try to push against them. I pushed and pushed for many years; it's exhausting, and alienating, and just hard. I reached a point where I learned to adapt, or mask, in different situations in an attempt to appear less weird, or to avoid having to explain myself, or to risk the awkwardness of admitting I don't get it (whatever it is that everyone else seems to be bonding over).

When I was just out of college, I worked with children and adults who had disabilities so severe they were taken out of society and put into institutions or "special" schools. They spent their days being trained to comply with the expectations of the staff, being rewarded for being "good", and being punished when they were "bad". Kids were restrained, put in small "time out" rooms by themselves, told that they should know and do better. Adults were infantilized with ticket systems and sticker charts that are commonly used in elementary schools. The terms used to describe people would change periodically to meet the current favor of society, but I'm not sure who those changes were meant to appease (disabled person vs person with a disability vs differently abled, etc).

Our daughter has always needed things that it seemed like other kids her age didn't need. She is strong willed, determined, and has always known what she wanted. We watched other parents impose boundaries and hold fast to them, and we saw that seemed to work for other families. I heard other parents say things like, "If we don't clean up after we're done playing then we'll lose privileges", and their kids cleaned up! What are these magical "privileges" that other parents speak of? I saw other kids given plates of balanced nutrition for lunch, and witnessed them trying everything on their plate, eating the healthy food before the dessert, and not questioning or doubting this process at all. Our daughter, on the other hand, would insist on ice cream before even thinking about allowing us to present any other options, and if we hesitated for even a moment she would tear into a vicious rage that felt endless and beyond her control.

Our daughter has always expressed her needs strongly, but I didn't see them as needs. I saw them as preferences, or quirks, or in some cases wrinkles to be ironed out. We don't eat dessert first because we just don't - kids can learn things like that. After one extended and particularly intense meltdown at my mom's house resulting from my insistence that my daughter wait until after dinner to have her ice cream, my aunt finally looked at me and said, "I'm surprised you haven't given in yet." I was trying to be a "good" parent - holding the line so that our daughter would learn. My aunt's comment made me wonder, though - why does it matter when she eats dessert? Is it worth having her scream, cry, kick, push, and roll on the floor in a state of complete dysregulation for over an hour?

What we have observed is that setting boundaries and holding them, using rewards and consequences, and other tools that motivate compliant behavior, simply don't work with our daughter. The more we tried them, the harder things got. The resistance was stronger, the meltdowns were more severe. "Defiant" was the word used by therapists, psychologists, and psychiatrists. It didn't feel like defiance to me, though - it felt like something deeper and less conscious. I wasn't convinced that she was choosing her behaviors. The typical parenting advice had us continuing to hold the line, with the promise that it would work eventually. It never worked, and our daughter finally hit a breaking point.

I call the breaking point burnout. It started with adamant refusals to go to her summer camps and programs. Then insistence on more and more screen time. Then a marked reduction in the (already small) variety of foods she would eat. Then an inability to get out of bed, or to bathe, or to brush her teeth, or to comb her hair. Then a reduction in communication - our daughter currently alternates between screaming demands for us to bring her things while she lies in bed on the iPad, and communicating in a cat language (mostly hissing) that seems to to make sense to her but is completely incomprehensible to us. The change from what looked to the doctors like defiant behaviors to what looks to us like a dysregulated and disabling state completely out of her conscious control, was rapid. Looking back, I can see the slow development of it over years - the mounting stress of the demands of life building and building until her body and still developing brain couldn't take any more. But I can only see that in retrospect. It wasn't until she hit this state of burnout that I could clearly see that whatever is going on with my daughter is not normal childhood boundary testing or defiance, it is a reflection of her neurotype that makes her disabled when faced with the expectations of our social system.

Our daughter's burnout has started us on a journey. I suspect it will be a long one. We need to find a way for her to live in the world that doesn’t cause her activation and dysregulation. She needs a sustainable path. I know she can thrive, she just needs to be able to take care of her needs, set her own limits, and make her own choices. It’s not unreasonable, but it can feel unreasonable in the face of everyone else’s expectations.

1. See: https://www.who.int/health-topics/disability#tab=tab_1

Getting through a hard time

(facing it instead of running away)

The past few weeks in my house have reminded me of the early days of covid. Our daughter is going through some kind of neurodivergent burnout  and she hasn’t wanted to leave the house. “Hasn’t wanted” is putting it mildly - she expresses her desire to stay home in more certain terms. My wife goes to work, and I stay home with our daughter (ostensibly working from home). I haven’t been able to run simple errands, go to in-person meetings in the mornings, or to meet friends for coffee. I love being home - I am generally happy at home - but there is something about not being able to leave that takes away the serenity and starts to feel confining. That confined feeling is what reminds me of those early days of covid. That, and when my daughter is home all day, and I’m trying to work, things tend to get a little chaotic. 

Whatever my daughter is going through is keeping her in bed, glued to the iPad, watching hours of youtube and playing Minecraft, eating popsicles, pushups, and KitKats, and occasionally having a meltdown that results in overturned furniture, pillows and dirty clothes strewn throughout the house, and wrappers from her diet of junk food along with associated sticky drippings in every corner. I move tentatively through the day, with a constant anxiety about what is happening, about what might happen, and uncertain about what to do. I feel helpless - I have no control, and I have no idea what is going on. Those feelings all remind me of those early days of covid. 

During covid, each day was a countdown to happy hour. Like many drinkers, I don’t do well when I’m not in control. The way I found acceptance was to have a few glasses of wine. The wine didn’t give me serenity, but it enabled me to stop worrying for a bit and to temporarily ignore the gnawing anxiety I felt at my lack of control - my loss of autonomy. If I couldn’t control what was happening on the outside, I could still control how I felt by taking something that would alter my state of mind. I could also control my body by limiting how much food I ate, meticulously counting calories (ignoring the calories from alcohol, of course) and trying to keep below a certain level each day. I also exercised control by getting up at 2:30 or 3:00 in the morning and jogging through the park in the safe stillness of the dark. 

Today, as we navigate the hard time that my daughter is going through, and all the feelings it instills, I am - for the most part -  not trying to manipulate the things I can control. I am not drinking, I am not limiting my food intake, I am not trying to escape the reality that I find myself in. I’m not serenely accepting it, either - it’s not that easy. I am still getting up absurdly early in the morning and exercising when the only other people outside are the ones who have been up all night. Keeping an odd sleep schedule gives me some sense of power - and it’s the least destructive control mechanism I have. I still get frustrated and upset. But I understand that my influence is limited. I am thinking about what I can do and what I can’t do. I know that the only way to get to the other side is to go through it. That is a huge change from where I used to be. In facing challenging times in the past, I would try to avoid it, or maneuver around it. I would run away from it, and force someone else to deal with it. I thought I could make hard things go away by pretending they didn’t exist. In many ways, it was an effective strategy. The problems didn’t get resolved, but I didn’t care that they didn’t get resolved because I wasn’t the one who had to deal with them. 

Getting married and having a child were choices that I made that I am fully committed to. Thinking back, I don’t know that I have ever been fully committed to any choices that I made until these two. When I first moved in with a girlfriend, I wasn’t really committed - it was more a matter of convenience. Whenever I moved to a new destination, I wasn’t committed - I knew I could pick up and leave at any time. If I signed a lease, I wasn’t even committed to that. I abandoned the first apartment that I signed a lease for when I was ready to move, leaving a mess for my roommate to deal with. I certainly wasn’t committed to any job - I would say whatever it took to get a job, but I would leave abruptly as soon as it suited me to do so. I believed that in order to survive my number one priority had to be me - my needs, my comforts, my convenience. In many cases, that meant running away when things got hard.

But I knew when I got married that it was forever. It was the first time in my life, I think, that I felt like something was forever. Having a child is of course forever - I never had any doubt about that. At the time I made these commitments, it was easy. Nothing was hard yet. I knew there would be hard times, in theory, but I didn’t really know. I find a great relief now in knowing that I am fully committed to getting through hard times without the option of pushing the eject button. My sense of commitment doesn’t make the hard things go away, but it reassures me that no matter what happens, I can deal with it. I have hope - and faith - that my family will move through this hard time and arrive at the peace and calm that I know is out there waiting for us to find it. 

I had a drink last night and lied about it

It was a dream, but still…

Last night I dreamed that I went to my 25th college reunion. Almost immediately upon walking into the room filled with vaguely familiar yet mostly unknown faces, I felt the sense of awkwardness and separateness that has always consumed me in social gatherings. Why am I here? I thought. I don’t know these people the way they all seem to know one another. Then suddenly I saw one person I recognized. She offered me a drink and I said yes and drank it without giving it a second thought. I felt the ease and comfort that came from the drink at first. But then, still dreaming, I realized what I had done - I had had a drink. My ease and comfort was quickly replaced by a sense of queasiness and panic. I had a drink, but I don’t drink. I’m almost two years sober. My anniversary is coming up. Does this mean I need to reset my sobriety date? I thought about lying - nobody else has to know. It was just one. I can’t show up at the meeting, stand when they ask for newcomers, and announce that I’m back at 24 hours. I felt shame and remorse, and I wasn’t even tipsy yet. I can’t tell them - I can’t.  Then I thought, well, if I’m not going to tell anybody, maybe I should have another one. 

Then I woke up. I had been in a deep sleep and when I woke I wasn’t fully awake - I was somewhere in the inbetween place. I was filled with a sense of remorse and regret about what I had done. I was dreading the next meeting I would go to, debating in my head what to tell them or whether to tell them anything. Then suddenly it hit me - I had been dreaming. It was a dream. I didn’t really have a drink! Still, it took a while, lying awake in the middle of the night, for all the strange uncomfortable feelings to slip away and for me to feel the sense of relief in knowing that it had all been a dream. 

What bothered me about this dream, and the thoughts I had in the moments after waking, was how quickly my instinctual tendencies kicked in. First, I readily accepted the offered drink and consumed it quickly. Then, realizing what I had done, I immediately started to plan how I would lie to the people I care about and who care about me. Then, having decided to lie, I started to think about how I could take advantage of the situation and maximize the temporary enjoyment and indulgence I would experience as a result of my decision to pretend like what was happening was not really happening. It was as if I was calculating how to get my money’s worth for this lie. 

Yes, it was just a dream. But, when I woke up - when I knew that I was awake but hadn’t yet realized I had been dreaming - I continued the plotting in my head to withhold any disclosure of my behavior so as not to upset my sobriety date and disappoint my AA friends. I felt guilty as these thoughts went through my head. When I realized it had all been a dream, the sense of relief I felt wasn’t just because I hadn’t had a drink - it was because I realized I didn’t have to lie about it. I didn’t think, “Thank goodness I don’t have to tell everyone I had a drink.” Instead, I thought, “Thank goodness I don’t have to lie to everyone about the fact that I had a drink.” 

In AA, people call this “alcoholic thinking”. It’s just how my brain works if left to its instincts. I would hope that if I really had gone to my college reunion (which I did not - I don’t think I’m ready emotionally to confront that part of my past), that I would have been able to hang out with my former classmates without having a drink. I certainly could not do that during college - before I discovered alcohol I was largely isolated and alone, hunkering down in my dorm room or in the library while everyone else was having fun in each other’s company. Then, when I was introduced to alcohol and it became the solution to everything that I thought was wrong with me, I would never be without it in any kind of social situation that involved more than one other person. But that was 25 years ago and I’ve done a lot of work since then. I would hope that now things would be different. But if they weren’t different, and I did have a drink, I would hope that I’d be honest about it and not try to pretend it didn’t happen, lie about it to others, and to delude myself as to the true nature of my behavior. 

I would hope, but I’m not actually sure. There were aspects of the dream that were surreal. Like, a swimming pool randomly in the middle of the bar. But, the feelings I felt during the dream were totally realistic. I really felt the sense of aloofness in facing the mingling crowd of people; I felt a sense of relief when I saw a familiar face, and that sense of relief was greatly increased when she offered me a drink. The feelings of remorse were vivid, as were the feelings of guilt as my dreaming mind started to plot out how I would obscure this event from my history. 

I didn’t get drunk in the dream, and I didn’t perform any alcohol induced antics that I would be embarrassed by or regretful of. What makes me uneasy is what the drink did to my mind - the immediate desire to lie, the commencement of mental gymnastics to justify my actions, the twisted rationalizations of my behavior. That stuff used to occupy a large percentage of my brain, and it was exhausting. Not drinking frees me from the mental obsession - that it was I am grateful for. This dream was a wonderful reminder of why I don’t ever want to drink again, and what will happen if I do.

Finding my profounder self

And the limits of self deception

"For we all know how we all deceive ourselves - that is to say, how people in general, our profounder selves excepted, deceive themselves - as to motives of action."

-Charles Dickens, Little Dorrit

I was reading a Charles Dickens novel recently when I read this line, buried in thousands of words, casually describing what is going through one character’s mind as he tries to rationalize what he’s about to do. I love how Dickens pauses the narrative to speak this aside to the reader, temporarily breaking the pretense of the fiction to connect with us on a universal truth - that we lie to ourselves about why we do things. But then he inserts a caveat - except our profounder selves. When we try to deceive ourselves, we only partially succeed. Deep down we know what we’re really thinking, or why we’re really doing what we’re doing. Sometimes, though, it’s buried so deep that we can’t see it. Maybe it’s just a feeling, a discomfort, a nagging sensation. 

When I drank, I spent a lot of effort trying to tell myself that I wasn’t really feeling that nagging sensation. I appreciate the phrase “mental gymnastics” to describe this phenomenon. Before deciding to open a bottle of wine, I would explain to myself why it was OK, why it was normal and healthy to have wine every day. I could skip it if I wanted to, but I don’t want to. It’s a small joy in my life - there’s no harm in letting myself experience a small joy, is there? I don’t feel compelled to drink, I just feel like enjoying a drink. And it’s a nice bottle of wine, it’s fun to taste the subtle notes of terroir, to experience the aroma, to identify the hints of chocolate, or raspberry, or whatever else is on the label. Really, drinking this wine is an intellectual exercise. You know people take tests on this stuff? And besides, wine is good for you. There was an article about that in the New York Times just the other day. 

At some point I would land on the conclusion that it’s not normal to internally debate the merits of having a glass of wine to this degree - that must be something only alcoholics do. Since I’m not one of them, I should just shut up and have the glass of wine already. All this internal rationalization and feigned self-deception was only an issue when I was sober. I had to convince myself it was OK to take the first drink, and the second drink. For many years, I forced myself to stop there - two drink maximum. That was the hardest thing. I looked forward to the special occasions on which I granted myself an exception to the two drink rule. A special occasion was defined as any time I was in the company of anyone in addition to myself and my wife. The pandemic made clear the degree to which I depended on special occasions. 

The thing I loved about special occasions was the ability to take a break from the mental gymnastics that normally took up so much of my brain’s capacity. After the third drink it didn’t matter so much. I could relax. The voice in my head would change from an anxious, nagging source of doubt, to a happy voice of light hearted fun and entertainment, feeding me sarcastic jokes and pithy lines that I would repeat out loud, convincing myself I was the life of the party (more self deception). The sense of relief that came with the change of mood of the voice in my head was palpable. I longed for it when I didn’t have it, and I resented people who seemed to live with the happy voice all the time. Or maybe those people don’t have any voice at all? Maybe not everyone has the nagging, self doubting, rationalizing, agonizing internal monologue that rages on and on insidiously at all waking hours? We all know how we all deceive ourselves.

The first step of Alcoholics Anonymous is to admit you are powerless over alcohol and that your life has become unmanageable. It’s a tough sell when you have a successful career, with a wonderful family, plenty of money, no legal problems, and no externally apparent issues at all. But life can be unmanageable in many different ways, not all of them visible to outside observers. That wasn’t my initial assumption. I used to think that if you were powerless and unmanageable it meant you were homeless, drunk all day, and incapable of any kind of human functioning. Dickens has characters like this in his novels. He sums it up in an early story: “drunkenness—that fierce rage for the slow, sure poison, that oversteps every other consideration; that casts aside wife, children, friends, happiness, and station; and hurries its victims madly on to degradation and death.”¹

I found it was easy to dismiss any incubating concerns, to deceive myself, as long as I wasn’t that bad. There was always somebody who had it worse, and plenty of fellow drinkers who could encourage me in my deception. It wasn’t until after I stopped drinking that it became more clear that I didn’t drink because I liked wine and appreciated its artisanal qualities (although those things were true). I drank because I needed to drink to escape the voice in my head. It scared me to think of life without drinking. I couldn’t imagine a day without wine. Alcohol, I realized, wasn’t my problem - it was my solution. Solution for what? Just for getting through each day, for escaping the need to contemplate reality, for suppressing anxiety, for thinking about hard things. It was my solution for life. Even if I didn’t use it to debilitating extremes, I depended on it. And I knew that I depended on it - deep down, I knew that I drank because I had to drink, not because I wanted to drink. Admitting that to myself, though, was the most terrifying idea. And I avoided it for many years. 

For me, the first step in resolving my tendency to deceive myself was to stop drinking. I didn’t admit anything to myself or anyone else. I just said “I think I need to stop drinking.” And I started to come to terms with the reality of life without my daily dose of its antidote. Mornings were easy because I never drank in the morning anyway. Afternoons were harder because that would be the time I would start to look forward to my first glass of wine. Evenings were very hard. What do I do with my mind if I’m not distracting it with work, and not having a drink? There are plenty of distractions available, not all of them healthy or constructive, though many better than finding relief in alcohol. But distractions, I discovered, only got me through the next hour (or the next few minutes). I found myself looking forward eagerly to bedtime. When life was not challenging, I found it to be boring. The monotony of my routine had always been there, but now it was more exposed, more obvious, harder to deny. Routine itself was not the problem - I love routine, I love doing the same thing at the same time every day. It makes me feel good. But there was something missing - the daily routine felt monotonous because it was empty somehow, despite all the wonderful things I had in my life. I went on like this for some time. Over a year, until I hit a point where I felt I couldn’t keep “powering through” as if nothing was wrong. 

Some people might say what was missing was god. Phrases like “I had a god-sized hole” or “I was spiritually bankrupt” are common refrains among people who have been in AA for a long time. That didn’t really make sense to me when I first heard it. I don’t know what god is to me, so it was too abstract. People said we all understand god differently and it’s a matter of figuring out what god is to you. Great, but how? What does that mean? It feels like when people in AA talk about god it’s shorthand for something else. Other people seemed to understand what that something else was, but I didn’t. Despite my ambivalence and lack of understanding about what god means to me or if god is the missing element in my life, I found that going to AA meetings, working with a sponsor, and doing the steps, made me feel good. 

I’ve been active in the program for just over one year, and I’m still ambivalent about what god is to me. But, whatever is happening in AA, it’s working. I no longer feel the need to deceive myself, and my inclination to distract myself, or to escape from myself or my surroundings has been reduced significantly. I feel good just sitting, listening, thinking. Time feels like it’s going by fast, even when it’s slow. I feel more like I want to hang on to time rather than get through it. That’s a new sensation for me. Perhaps I’m more in tune with my “profounder self”.  For now, I’m inclined not to try to explain it or understand it, but just to enjoy it. 

1. Wikisource contributors, "Sketches by Boz/The drunkard's death," Wikisource , https://en.wikisource.org/w/index.php?title=Sketches_by_Boz/The_drunkard%27s_death&oldid=13658120