Headroom—a way to prevent autistic burnout & decrease autistic meltdowns

I used to have meltdowns at least weekly. A good whopper every Thursday after finishing with patients. These often involved stomping my feet, kicking walls, and yelling at the wall. Sometimes I would throw my whole bookshelf on the floor. I had no idea what was happening until I found out I am autistic and that there is a name for these episodes: meltdowns.

Once I understood what they were, I looked for ways to decrease and stop them. Honestly, the most significant irritation was cleaning up after a meltdown and the following exhaustion.

Kendall—who learned through his meltdowns from pushing things to his limit—started incorporating what he called ‘headroom’ into his life.

I fought him at every turn on his recommendation to do less and not fill every moment, but eventually—little by little, I gave in and created more space. The result: fewer meltdowns and less exhaustion!

Musings

The idea of headroom is similar to spoon theory in its goals. Christine Miserandino created spoon theory to describe what it’s like to live with lupus and the impact of chronic illness.^[1]The Spoon Theory (Miserandino, 2003) | But You Don’t Look Sick The idea has since spread throughout various communities to describe the exhaustion that may characterize their specific situations. People with certain invisible conditions, such as autism, anxiety, or depression, can have far fewer spoons than others. Generally speaking, spoon theory concerns your daily or short-term resources.

Headroom, however, is about managing your energy/resources over the long term.

As it relates to autism, a spoon deficit can end in shutdowns or meltdowns. The mismanagement of headroom can be a direct path to burnout. Depletion of mental and physical resources occurs over time and is often unseen. Alexithymia may aggravate accurate monitoring since physical and mental needs are often outside awareness. A significant factor to remember is that headroom is not so quick or easy to replenish. For these reasons, you must build it into your life’s schedule.

These areas can include:

• Relationships; familial and friendships
• Work; workload, schedule, and time away
• Household maintenance
• Leisure/extracurricular activities
• Obligations; voluntary and involuntary

I know when I am out of headroom because I lose at chess. I may not be able to tell that my brain is exhausted, but chess is unforgiving and will immediately demonstrate how much space I have.

Headroom is critical for people in substance misuse recovery. Research shows that relapse occurs weeks before actual substance use. Typically, they are not attending to their daily stressors, with stress accumulating all the while, and not setting aside restorative time. People with substance use disorders are like the canary in the coal mine—inattention to headroom has a much more dramatic and visible outcome—they relapse. But everyone else is just getting silently harmed through inflammation etc.

Definitions

Every month, I allocate a week to not seeing patients, catching up on my writing, emails, etc., and starting afresh. Last week was that week, and many unexpected things happened last week. Enter the concept of headroom.

First, let’s consider a few definitions of headroom:

• Merriam-Webster — vertical space in which to stand, sit, or move
• Wiktionary — the distance between the actual performance of an algorithm to its maximum possible performance
• Sound On Sound (audio) — provides a buffer zone to accommodate unexpected transients or loud sounds without risking clipping (distortion)

A story of diminishing headroom

Monday (headroom remaining: 100%)

Eva and I go for a pedicure. The three aestheticians (unsupervised) have on a loud TV show, which I can still hear through my sound-blocking earplugs. Despite saying, “That hurts,” over and over, the aesthetician wounds my foot, causing it to bleed in 3 places.

I get a receptionist call saying that I missed an appointment for a medical test and that the doctor is irritated. However, when confirming the date, I see the test isn’t scheduled until the following week. Scheduling miscommunications with this assistant have been an aggravating conundrum for over a year.

My less-than-1-year-old dishwasher has a problem reoccur—one that was repaired only this past February. It would be July 20 before a repair appointment, but they will send a technician on Tuesday to verify the issue.

I have a virtual appointment for Mr. Pluto—my 20.5-year-old dog. Mr. Pluts is known as a Forever Dog (one of the few dogs ever to have made it to over 20 years old). I have been helping him overcome iatrogenic Cushing’s (i.e., vet induced)—the result was an in-clinic appointment for Tuesday at 8 am.

Tuesday (headroom remaining: 75%)

On Tuesday, Pluto has an Ontario Veterinary College (OVC) appointment—a 2-hour drive. The appointment is delayed until 11 am, with a consultation at 12:30 pm. Pluto’s appointment goes well. The vets always fuss over him being the 20th oldest dog ever. Next, a 2-hour drive home.

An occurrence with Eva gets the better of my empathic attunement, overwhelming me like a tsunami.

Wednesday (headroom remaining: 40%)

I learn the washing machine is not working because no water is coming into it, so I speak to the person, Dave, who is working on our renovations. Oh, did I forget to mention I have a person here Monday to Friday, 8:30 am to 5 pm, doing renovations—bang bang bang, saw, saw, saw, bang, saw, bang, saw? As it turns out, the water going to the washing machine looks like milk, meaning that the water heater needs a service check.

The hot water technician says the machine is 23 years old and could explode at any moment. It’s a straight replacement, which he says they will do in the morning.

My close friend Claudio shows up to repair my car mirrors—which were damaged in a Montreal parking facility incident. My sense of space is terrible at the best of times, and close, tiny spaces often result in scratches and bangs on my car.

I then have a 2-hour meeting with a colleague to make additions to the blog and website regarding AuDHD.

In the evening, Pluto starts coughing and has strange breathing sounds.

Thursday (headroom remaining: 20%)

I contact my vet, who says to take Pluto to the animal emergency room. I contact the Ontario Veterinary College, who tells me to come for an x-ray at 4:30 pm.

While playing a game of online chess, I go outside to have a tea and fall off the step, hit my knee and hand, which are now both bleeding, and twist my ankle. I message my chess opponent to tell them my computer is covered in tea, I am bleeding, and that I need a moment. I clean the tea off the computer and sit down to continue the game—which I lose—which irritates me. Fifteen minutes later, I go inside to get some water, and I fall off the deck again! More bleeding, I twist my second ankle, and my other leg starts bleeding. But the day must go on.

The dishwasher repairman arrives. He tells me the problem will repeatedly happen because the control boards are made with inferior glue due to supply issues since COVID. He tells me I should buy an extended warranty because I will need a service call every 2 months.

Next, the water heater people show up. They tell me the newer water heaters won’t fit in the same space, so the plumping and electricity would need to be moved and the chimney realigned. I make the decision to install a tankless water heater in July.

I rush to the veterinary hospital as it is 3:15 pm—almost time for my 4:30 pm appointment. I fall in the driveway, badly scrape my other knee, and re-sprain my right ankle, now swollen to 3 times the size of the other. My hands are hurt and also bleeding, and I fall and hit my right cheek. But the show must go on. I ask Eva to come with me because I am concerned with my accident proneness and would feel better with her coming, but she states that she is not ready—and with her being autistic, that just means no.

It takes me over 2 hours as I repeatedly end up going the wrong direction despite my GPS. At 4 pm, I get a phone call asking where I am, and I say I will be later than 4:30 pm. Turns out, the appointment was scheduled for 4 pm. I get to the vet, Pluto gets x-rayed, and his medications get adjusted. I drive home and arrive at 7:30 pm.

I speak to my son, as he was supposed to arrive on Friday. I suggest he stay in Montreal as long as he wants. At this point, I want him to stay as I can’t stand the thought of one more thing to do.

Friday (headroom remaining: 10%)

Pluto has a chiropractic appointment.

I work all day doing emails and screening reports. I also attended to something for Eva, which turns out to be a miscommunication, and she gets extremely upset, crying, and overwrought. I feel highly anxious and upset with her lack of understanding over the miscommunication—this leads to conflict.

Saturday (headroom remaining: 5%)

I wake, feed, and walk Pluto. I see my weekly coach, then go back to bed, only dragging myself out of bed at 6 pm. Eva wants to talk as she is feeling anxious and looping from our conflict, but I have nothing left, and I tell her that I need at least 30% headroom to hear and respond. And so I go back to bed. During the week, I was frustrated that I was not feeling happy. Although everything was turning out okay, I could not seem to get into a state of joy. I start fantasizing about going away and living somewhere that no one knows.

Sunday (headroom remaining: 0%)

And that puts me here and now. It’s a beautiful day, but I only want to sleep.

A discussion about headroom

Natalie: Kendall, you are the person that introduced the concept of headroom to me, but I took a long time to come around to it. What is headroom?

Kendall: Headroom is leaving space and time for unexpected things to happen. With no headroom, when something unforeseen occurs, you have no space to maneuver and no margin for error. The result is instant stress because everything demands immediate attention.

There have been many times when I would get some gig, and knowing how much I could produce in a day, I get out my calculator to figure out how much I could sleep and still meet the deadline. So there I would be: Getting 2 to 3 hours of sleep per day and, as the deadline approaches, getting no sleep. This strategy would sometimes end in a hallucinogenic delirium. It is insanity to figure out how much you can sleep. Many people end up doing harmful things to keep themselves awake.

Natalie: Each time I had a meltdown, you reminded me that I needed to increase my headroom. I would, but only temporarily. Then, it would not be long before I filled my headroom with new tasks, because I would say, “Yay! Look at this extra space!”

Kendall: Exactly! The result was that you became stressed and burnt out.

Natalie: You used a term the other day: ‘perfectly reasonable demand avoidance’. This is a much less ableist term than pathological demand avoidance; it’s the idea that I don’t have to do everything that is asked of me, and that’s perfectly reasonable. I used to say ‘yes’ to everything, and then the people close to me had to deal with the meltdowns, shutdowns, and burnout. To people not close to me, it looked like I was a superhero! They saw everything I could do, but they didn’t see the repercussions.

Kendall: Yes, that’s the grand illusion, isn’t it? We even buy into that illusion ourselves; we think, “Look at me! I’m doing it all!” But then we crash and burn out. I would argue that’s not a success.

Natalie: Also, the long-term toll on us is ignored. Science shows the accumulative effects of this kind of stress results in heightened blood pressure, reduced focus, weight gain, becoming less active, fatigue, sleep problems, anxiety, and depression. . . When you live in crisis mode, rest seems wrong.

Kendall: When did we all sign up for this? That whole mindset—if you’re not slammed and stressed, you’re not doing it right—you’re not productive. According to that mindset, taking care of yourself is not productive, and if you are not hustling all the time, you are a big slacker—you must be making a move on something at all times.

Conclusions

Meditation, exercise, breathing, proper nutrition, and not overextending ourselves create headroom for when needed most. You don’t need it all the time, but when you do, you need it badly.

The less headroom an autistic has, the more likely burnouts and meltdowns will happen. When I have no headroom, I sleep all day on Saturdays. By incorporating headroom into my life, I went from 2 meltdowns per week (one of those being major) to 3 meltdowns a year, with some so minor that I don’t remember them.

Do you think you lack headroom in your life? What steps can you take to increase your headroom?