My Problem with Autistic Meltdowns: Part Two

This summer has been an adventure in more ways than one.

This past spring, I wrote a piece about my long struggle with violent, autistic meltdowns. In it, I talk about the problems I’ve had with controlling my meltdowns and basically not breaking things in my house. As I promised in that piece, I’m back to provide a “part two” update on my work with meltdowns.

Freedom from Shame

Over the past year, I’ve been lucky to reconnect with a good, old friend of mine from my undergraduate years. He has been walking his own mental health journey and we have been able to forge a meaningful connection based on some of our shared experiences, mainly the explosive vents we both experience within our respective diagnoses, but also regarding the shame and depression that follows each of these incidents.

When I have a violent meltdown and throw something against the wall and create a dent, or I punch a door and create a hole, or I throw my inhaler and it errantly hits the TV and completely bricks it, I inevitably feel incredible amounts of shame once I have returned to a more stable sense of self. This shame perpetuates depression, which can then push me towards another meltdown. For me, autistic burnout occurs when this process becomes cyclical: I can’t free myself and it becomes self-perpetuating.

Shortly after writing my original piece, I was speaking with my friend about my most recent violent meltdown, and I was recounting the myriad of things I had done: Thrown my lamp, broken my nightstand, screamed and screamed at anything moving or making noise in my house, and it lasted for hours. He offered this: “Instead of telling yourself about all the stuff you did, try telling yourself all the stuff you didn’t do.”

The Next Meltdown

I didn’t have to wait long for my next meltdown and to try my friend’s advice. What precipitated the meltdown was immaterial; what’s important was the aftermath. I remember running to my bedroom, slamming the door, screaming unintelligibly, and remaining on my bed with my face in a pillow for some time, but not for long. When my screams subsided, and our dogs sensed safety, they came rushing onto the bed to comfort me, as did my wife. The meltdown was over, and swiftly.

Afterwards, I began listing the things I didn’t do: I didn’t throw anything. I didn’t break anything. I didn’t yell at the dogs or my wife. I also didn’t feel the cold shame I’d become used to in the aftermath of my meltdowns.

Data and Debriefing

Another thing my friend recommended I do, and something my wife and I always have done, was debrief each meltdown and collect the data. Both my wife and I are serious data hounds: we’ve both been researchers in our lives and it’s ingrained in us. We hadn’t combined our practice of debriefing with our custom of data collection (we do have a tendency to chart a lot of my behavior for interpretation).

In debriefing, I was able to list the ways the meltdown went right to my wife. Any time I would begin to drift towards a damning statement about my behavior, we would check it and return back to what went right (kind of like following your breath in mindfulness meditation: when you get distracted, make note of it and return your attention to your breath). This is where the anti-shame work really happens.

By collecting data, which we do very informally (but I could totally see my nerdy wife and I turning it into spreadsheet), I am able to see the progress I’ve made in several areas including frequency, intensity, length, precipitating factors and stressors, and levels of shame or depression following. We then use the data to screen for future meltdowns: what situations could lead to one? What environmental triggers cause more intense meltdowns? How are the levels of negative emotions effected by the aforementioned factors?

In reviewing the data, we saw the change we’d been hoping for.

The Shame-Rage Cycle

The shame-rage cycle describes feelings happening when a person is shamed (being humiliated, embarrassed, or feeling judged) and those negative feelings turn into aggressive behaviors. The rage or aggression occurs as the person is trying to avoid feeling the shame. In counseling and psychology, we see normally see this occur in people who have been abused or bullied because these people are made to feel fault and shame by their perceived defects.

When we apply the shame-rage cycle to my meltdowns, we can see direct results. The more shame I feel following a meltdown increases the severity of my depression, which is a stressor that often leads to another meltdown, another incident where rage can emerge.

Shame-rage cycles are hardwired processes, so they are incredibly difficult to change. Mine come directly from an abusive childhood. However, the human brain has something called “neuroplasticity”, meaning it can and will change its schematics under optimal conditions. My friend gave me one of those conditions by telling me to focus on what went right with the meltdowns rather than what went wrong.

Breaking the Cycle

One simple change made an enormous difference in breaking the shame-rage cycle of my meltdowns. After the first debrief, where I was able to name all the things I did not do, my wife and I saw a change. My meltdowns were immediately less intense, less long, and occurred with less frequency. We went from seeing meltdowns occurring multiple times a week to once every three or four weeks. It has been a summer of change in our house.

Perhaps the most exciting change has come in my moods. Autism affected my moods for years, causing intense depression and anxiety. Through debriefing and looking at hard data, I’ve come to understand a lot of my depression comes post-meltdown. Levels of severity and violence in meltdowns appear to have a causal relationship with concurrent levels of depression and stress.

At this point, at the end of the summer, I can say with surety that I have broken the cycle for the time being. Honestly, I’ve had a wonderful summer as a result.

Living Free

I feel like I’m living free from the anxiety of meltdowns for the first time. This summer has seen me travel all over the place: from New Mexico and California to an upcoming trip to Colorado. Not to mention all over my home state of Oregon. My travels are no longer accompanied by a foreboding sense of doom. I used to leave for my road trips in tears and come home exhausted and completely crashed. Now, I am excited when I leave, and recharged when I return.

Part of this is how I’ve learned to mitigate my sensory and social environment (another blog, for sure). A lot of this is because I’m living free of the shame and rage I’ve come to expect in life. I owe a lot to my friend’s words.

But I also owe a lot to myself and my commitment to this work, which is something we often ignore.

Moving Forward

I’m so glad to be moving forward in my autistic life after living in a morass for so long. Right now, the name of the game is maintenance. This is new and exciting for me. I feel like I can breathe clearly, like my head’s above the water of my autism for the first time ever. It’s wonderful.

I plan on continuing my practice of debriefing and data. I plan on adding new stress reduction techniques to my life. I plan on seeing as much of the world as I can, as safely as possible with regards to public and personal health. When I think of how far I’ve come in the past five years, I’m quite happy with who I am.

Meltdowns have made me a better person. It’s strange to frame it like this, but it’s true. I’ve come to a place where I am grateful for them, and I welcome them into my home.

An incredibly happy summer…

War all the Time

I don’t dream. Well, I suppose that’s a bit of a misnomer. I don’t remember dreaming, and I haven’t for a long time. I don’t know if it’s a product of the amount of cannabis I consume, or a product of my neurology, or a combination of both, or what. It’s been a welcome relief. The times when I have completely ceased my cannabis use have seen an uptick in dreams: most of them leaving me very restive and uncomfortable when I awake (the last time I dreamt regularly was five years ago).

Not dreaming is a blessing for me. Darkness is all I want when I sleep, a complete shutdown of all processing. However, over the past two weeks I’ve struggled a great deal at night. I’ve had several nightmares, which have woken me up in the middle of the night and leave me unable to fall back asleep. Sometimes I wake up and I’m close to a meltdown because I’m experiencing sensory-type interactions inside my dreams. I wake up sweaty, with hitched breath, and usually a scream alerting my wife.

The dreams over the past few weeks have all revolved around themes of war. Sometimes it’s ultra-futuristic, like the night after I re-watched Aliens. Sometimes it’s common, modern war scenes I’ve cobbled together from visions of movies and tv shows. There are times when I am a soldier and I’m fighting. More often, I am an innocent bystander observing it all go down and being affected by it. There is always a feeling of fear and confusion, exhaustion and hunger. It’s unsettling and the dreams end quite abruptly (as they often do), leaving me awake and uncomfortable, tossing and turning and moaning.

As a former psychotherapist with a penchant for Jung, I’m always going to analyze any dream I hear about or experience. It’s taken me a while to pin down what’s going on in my subconscious, but I think I’ve hit the nail on the head: I’m at war all the time.

I’m at war with depression and anxiety, my autism, the world around me. I’m at war with the idea that I’m stupid or unable to do anything of worth. I’m at war with meaning. Sometimes I’m fighting, teeth clenched, bearing down on my enemy with all the salt left in me. Sometimes I’m hiding, hoping the enemy doesn’t discovery and eviscerate me. Sometimes I’m just watching it all go down in a traumatic, almost dissociated haze. Sometimes it feels like I’m looking down from above and watching these things in my mind pummel me.

Let me give a harsh example of my truth. Sometimes, like yesterday, I can have an amazing day. Yesterday we had a close friend from college visit from Portland. We had a great time, lots of laughs and memories and creating new ones. We went for a walk, got a pint, and generally just had a lot of fun. We came back to the house with take-out in tow, still smiling, and as we began to eat I thought, for no reason, “You’re a dumb asshole. You should kill yourself. The best way would be to get a hold of a gun, or just swallow all your pills.”

This situation happens on a daily basis for me. Not a day goes by where I don’t have a seriously suicidal thought, including how I would do it and picturing it would look like. I don’t have to be depressed for this to happen, my mind just goes there. It’s one of the most frustrating things in my life and I don’t know how to get it to stop. So, I don’t.

I can’t stop it, so I don’t try to. Usually I start asking questions: why did this thought pop up? What is happening in my immediate situation? Do I feel unsafe? What thoughts were going through my head? How does my body feel right now? What can I remove from my immediate experience that may alleviate whatever stress brought this about? Often times I can find an answer, and cessation of the thought doesn’t necessarily follow. Just as often, I can’t find any reasons for the thought, and in reflection, it seems when I can’t find the answer I’m able to let it go more quickly and with less effort.

I am very cerebral. I live in my head, most autists do. I have a whole world going on up there that has nothing to do with what is happening in reality. Not finding a reason for the way I’m thinking is actually quite a relief. I’m able to stop the string of thoughts right there. When I find an answer, it generally leads to more and more questions. Thoughts lead to more thoughts. Answers lead to more questions. I need peace in moments when I randomly contemplate suicide. I need a respite from the war when this happens.

I generally don’t get rest. When I do it’s in short, cold, bursts: A 20-minute episode of Ducktales or The Simpsons. An amazing chicken sandwich. My morning quiet time, watching the birds arrive in the backyard. When these moments pass, it’s back to the front, and back to war all the time.

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Tell Me Again Why You Can’t Work?

I find it hard to make friends at this point in my life. Not only are most of my peers are parents and occupied with the ubiquitous task of raising children, but I also don’t know who is safe to be around. When I meet someone I literally have to ask myself, “Is this person going to be a positive or a negative? Will they hold ableist views? Do they have the patience and understanding to be friends with an autistic person?

Most of the time, new people I meet bend towards the ableist side of things: they have no patience or understanding of what it means to be disabled and how difficult life is for people like me. This happened this morning. A person I’ve met since coming to Oregon posted a meme of a man who was a double amputee, his legs, and was working a construction job. The meme said, “Tell me again why you can’t work.”

Well, let me tell you. Again.

I got my first job at age 16 as a dishwasher for Friendly’s Restaurants. I quite a month later because the noise was too intense, and the pace was too fast for me to keep up. I worked pretty consistently for the next 20 years. I paid my way through college by always having a job and I worked full-time for my final two years. I got fired or “let go” of three jobs during this period, either because I made a series of social blunders, which weren’t tolerated, or I burned out (I was taking a full load of classes and was involved in student government, etc. on top of the unknown autism).

When I graduated college, I began working with kids who had “behavioral health issues”. Mostly oppositional defiance type stuff, but also autism all over the spectrum as well as attachment disorders. I worked this job for two years before getting another full-time job on top of it. Then I moved to New Mexico, where I continued working full-time at various positions I would eventually leave because I was burnt out by my autism and PTSD. I was a social worker, a landscaper, a gardener, a farmer, and finally, a therapist.

Here’s the pattern I would go through with a job over the past 25 years: I hit the ground running and immediately make myself as indispensable as possible. I work incredibly hard, take on a lot of projects and responsibility, and I shine as an employee for about a year, sometimes maybe less. Eventually I would burnout and become suicidal. I often ended up in the hospital for suicidality and would be forced to quit whatever job I was working. I took the initiative and got my master’s degree, and even finished a year and change of a PhD (which I left partly because I wanted to and partly because I was burned out). I tried to better my working situation but by the time I was 36 it was obvious my mental health was a long-term disability, which we of course now know is autism. It was always autism. Even part time work was untenable.

What causes burnout in autism? Social interaction, constant following of neurotypical societal norms that don’t fit with autism, making eye contact, trying not to fuck up social graces in the work place, masking anxiety and autistic behavior, constant overstimulation of sense with no time to recover, but most importantly: Having to be on stage every second of the work day so no one knows how hard things really are for you. If you don’t have autism, you’ll never suicidality and if I hadn’t been pulled from the work force I’m fairly certain dying by suicide would be a swift end to my suffering.

Adults with autism have incredibly high suicide rates because they are forced to work in environments the complete opposite of ideal, and they suffer in silence. Most autistic adults try and mask their autism, and this causes a great deal of stress and shame. When you are putting all your energy into not losing it at the work place you are inevitably going to lose it when you get home. Every task becomes much more difficult, like you’re moving underwater. Dishes don’t get done, rooms get messy, laundry piles up, hygiene becomes neglected. Forget about any wellness practices getting completed. I was just too exhausted to do any of this stuff.

Constant burnout with no recovery time does not work for autists. Our autism will decompensate (worsen) and it snowballs leading to complete lack of functioning in all areas of life. This is why I can’t work a real job. This is why I stopped trying. I didn’t stop working because I am lazy. Far from it, as anyone who knows me would say. I didn’t get on disability to fund my music. I did it because I had no other choice.

Let’s talk about what disability looks like. I get an $800 deposit each month that is supposed to cover my medication, food, utilities, and rent. Considering I paid into disability for 20 years, this is a meager amount. I am privileged because my wife has an amazing job and we’re able to afford our food and rent and all the other stuff, but it’s still hard and we are constantly on guard about money. As far as my music goes, I make very little. Some months are better than others, but for the past year plus I haven’t been able to make it on stage on a regular basis BECAUSE I’M DISABLED. See, even playing music requires so much effort that I often can’t do it and need to take months off from playing.

Anyone who thinks people on disability are doing it for a free ride is a dumb shit. If something happens to my wife I am completely fucked financially. I look at people living on the streets and think, “I’m one tragedy away from that life.” It’s a constant thought in the back of my head. It has been ever since I started being a social worker back in 2006. I was always afraid I’d become a client, and now I have.

Mocking people with disability shows an incredible lack of maturity, understanding, and empathy. I won’t stand for people like that in my life. It’s no use arguing with them, these days when you argue with someone you may as well be arguing against yourself. Also, arguing isn’t a strength of autism. It makes me uncomfortable. Instead, I’ll just write this passive-aggressive blog.

I don’t like being disabled. There are a lot of things I wish my brain was able to do that yours can, and one of them is handle working a job. But I accept my disability and its implications for my life. There’s an amazing amount of value in my autism and I wouldn’t trade it for the world.
People who aren’t disabled will never understand disability unless they work hard to wear the shoes of someone else. IMG_2796