In one of my recent blog posts, I talked about how I had overdone things. I overscheduled myself. I had a busier than usual week, sure. But I had been feeling pretty capable lately. And besides, I told myself that it was just a few extra commitments, and I would be getting things checked off my list that had been lingering for a long time. I was sure that I would be able to cope.
What I didn’t realise was that the commitments themselves were just the ‘tip of the iceberg’. And that each commitment was a separate iceberg – each with its own deep, hidden stressors. And when enough icebergs accumulated, I was stuck. If you imagine me as a ship trying to ram through the icebergs, you can see why this becomes more and more difficult.
With the first iceberg, it seemed like I was able to get through without too much damage. Yes, there was some damage, but I could keep going. So I did. And I didn’t take time to get properly repaired between each iceberg. Uh oh, those duct tape repairs weren’t holding up. So what did I do? Yep, instead of going in for repairs and maintenance, I slapped some more duct tape on.
With each iceberg I ‘hit’ I became more and more bashed up. With each hit, my engine took more and more of a beating, which meant that I had less energy propelling me ahead. Yet, I still kept trying until I eventually had to surrender because my ship had sunk.
In real life, this culminated with me melting down at the bus stop and crying in public.
I didn’t know what I didn’t know
Once upon a time I didn’t know I was autistic. And I didn’t know that there were a lot of other layers that I was struggling with when there was an ordinary everyday task ahead of me. I wondered why it seemed so easy for other people to cope with a so-called normal schedule. And to be fair, I do not think that the way we live in our culture or society is anything near ‘normal’. And I do know that that all people struggle from time to time with these things. But I also know that being autistic does make my experience different.
Let’s take for example a trip to the dentist. Most people complain or worry about going to the dentist. I can’t claim to be in the heads of anyone else, but my guess is that my iceberg around this dentist appointment is much bigger than the iceberg of a neurotypical person. The sensory stuff alone would be overwhelming, but on top of that there is a lot of psychological distress.
In my case, I am seeing a specialist dentist because I am tired of dealing with the pain I get from clenching my jaw in my sleep. This is a new dentist that I will be seeing because I haven’t gotten results from the typical treatment.
Beneath the surface, my iceberg contains:
- Making a phone call to set up the appointment as they don’t do online bookings
- Difficulty understanding the receptionist and feeling unsure about whether I’ve booked the right kind of appointment
- Worrying that they didn’t get my email address right
- Having to ask about parking since I am unfamiliar with the area
- Filling out pre-appointment paperwork and thinking about disclosure of diagnoses and potential judgements around being autistic
- Checklists of medical conditions trigger medical anxiety
- Being organized to meet deadline to turn in 12 pages of paperwork
- Difficulty filling in the pain diagram as the descriptions seem weird and not in alignment with what I am experiencing; and anyway isn’t pain subjective? What I call discomfort, or rank as a 4 in pain, others might find unbearable… overthinking
- Receiving a generic text message reminder without the details filled in; now what do I do? Do I ring to confirm? Just show up?
- Setting reminder to bring my nightguard with me
- Having to drive to an unfamiliar area
- I am terrible with directions and panic when lost
- Having to figure out where to park
- Navigating a parking garage
- Finding the office in relation to the parking garage
- Wondering if I will be asked to wear a mask
- Talking to the receptionist
- Waiting for my appointment
- Worrying that if they take an x-ray they will find a tumour
- Worrying about whether I will like the dentist
- Putting on the ‘out in public mask’
- Having an ‘invisible’ disability and people’s expectations of me
- Worrying about whether there will be any unexpected ‘medical’ procedures (ie – blood pressure check?)
- Awkwardness about where to sit
- Awkwardness about where to put my things
- Awkwardness because I don’t always understand what I am being asked to do (ie – how ‘closed’ do they want my mouth when they say ‘bite down a little’
- Having someone’s hands in my mouth
- Physical discomfort
- Having to bite down on goopy stuff so they can take an impression for a mouth guard, creating a lasting bad taste, texture, and replaying of the experience
- Having to bite down on cotton
- Being in a small space for an x-ray
- Worrying about radiation from an x-ray
- Processing all the things the dentist has told me
- Worrying that I have sleep apnea and maybe I’ll die in my sleep
- Thinking about my estrangement from my family because my dad and my sister have sleep apnea
- Unable to ask for clarification from the receptionist about costs
- Worrying about the cost of the mouth guard
- Worrying about other bills now that I am thinking about the cost of the mouth guard
- Worrying that it will be a waste to pay for this mouth guard because all others have been
- Rebooking an appointment before leaving
- Now I need to book a sleep study and that’s a whole new iceberg forming
- Finding my way back to the garage
- Getting lost on the way out of the garage
- Nervous about the drive home
- Anxiously waiting for the report
- Anxiously waiting for the next appointment
- Dreaming about the next appointment
Here’s How it Looks as a Meme
What I Imagine is a More NT / Allistic Response
Yes, I know that this isn’t how it is across the board – just as I know that my ‘icerberg’ items differ from those of other autistics, but since it’s my blog I feel it relevant to both show my experience as well as what I assume NT/Allistics experience because those assumptions do become part of my own iceberg. Judging myself for not being able to cope like a ‘normal’ person is something I have spent a lifetime doing and I am definitely improving but it still rears its ugly head from time to time.
With that said, here is what I imagine is under the NT/Allistic iceberg:
- Nervous about going to a dentist due to cultural conditioning or bad past experience
- Going to a new place; need to look at map
- Annoyed with the costs
- Uncomfortable while they are being worked on but over it once they leave
I Didn’t Know There Were so Many Layers
I am starting to have a much better understanding of why something that seems so ‘ordinary’ takes me so long to recover from.
But for most of my life, I didn’t know. And even if I knew I was ‘anxious’ or ‘sensitive’ I saw those labels as proof of my defectiveness because they were traits that I thought I could bully myself out of. Or things that I thought I could logic or learn my way out of experiencing. So as I kept experiencing distress over ordinary events, the conclusion that I drew was that I was just a fuck up.
I didn’t know that I was experiencing so many more layers than most of the people I was comparing myself to. I didn’t know how to prepare for things, or how to regulate my nervous system after stressful events. I didn’t even know that most of these things were stressful events to me because they are seemingly so benign when we look at them from a neurotypical lens.
But now that I am looking through a neurodivergent lens, it allows me to have more compassion for myself. To think about what things are under the tip of the iceberg. To allow for more recovery time. Yeah, I don’t always get it right. Sometimes I don’t know the impact until after I’ve experienced the consequences. But overall, I do have an awareness that I used to lack, and even when I face the consequences, I can understand what happened and do my best to learn how to take better care of myself before, during, and after stressful events.