For anyone who knows an autistic person, please know that meltdowns tend to "build up". For me, restrictions on my autonomy and agency are the biggest weights on the scale, while jarring noises and other sensory issues are probably number two, yet it always seems like those are the final "trigger".
So, from the outside, it will look like the thing that I am reacting to is the loud truck that just flew by, but if I had not been told "You look better in black" before going out, I might have been able to steel myself appropriately and not even react to the truck.
Aside: those of us with autonomy and agency triggers can also be saddled with PDA (Pathological Demand Avoidance) as a misdiagnosis, and this is much more common for Black autistic persons, to the point of not getting their autism diagnosis at all. That deserves its own essay and not one I should be taking point on writing, but I would be happy to help and amplify those voices.
The longer I go being sleep-deprived, hungry, unsatisfied, etcetera, the harder everything else becomes. That may seem obvious, but when the line between appearing to allistics as "high-functioning" is so thin and frayed, those become that much more important.
Autistic persons who appear "high-functioning" frequently are spending a considerable amount of our day on tilt—i.e., meltdown-adjacent. This sustained level of stress and the energy we expend to combat it is a substantial part of what contributes to our high rates of C-PTSD and autistic burnout.
The relevant saying is:
"High-functioning" means our needs get ignored, "low-functioning" means our abilities do.
In order to survive and appear part of allistic society, we have "learned" to squash our needs down, to bury them as deep as possible, but needs are not some inert object, content to lay still. They're tell-tale hearts beating and shaking and vibrating our entire beings. They need oxygen. We end up building paper houses atop these actively-shaking foundations and when a gust of wind blows, we rush to bend ourselves to hold everything until it becomes too much and it all collapses.
And that is without additional gusts. The action of holding everything after a gust is an active one. It takes effort simply to maintain and we are not guaranteed an easy reset after the wind blows. For that matter, even activities and events we enjoy doing can put us in disarray. By the end of the day it can be all we can do to gather ourselves up and rebuild the ruins back to our shaky start.
Each of us goes through some detective work to figure out our triggers and our sensitivities. We are frequently unaware of precisely what may be putting us on edge. Remember, we are taught to bury them. Still, they add up and weigh us down.
Those of us who have gone undiagnosed for a while or are diagnosed as having minimal support needs do frequently self-regulate and do tend to be aware of many of our triggers. We can even intuitively or explicitly take steps to minimize them sometimes. That's if we permit ourselves to. A lifetime of lessons telling us not to can take its toll, though.
If, instead of minimizing our triggers and sensitivities, we bury our needs, then it becomes a ticking clock. Maybe it's acid eating away at our supports or maybe it's Bruce Willis in a mine shaft with a nuke, but it's not going to go well for us when it can no longer be contained.
One of the reasons why ABA (Applied Behavioral Analysis) is so damaging is that it focuses almost exclusively on external presentation—it builds paper houses atop buried nukes. ABA is remarkably like teaching a dog not to growl—something no good dog trainer should do.
I love dogs and most animals. I think there is a lot we can learn from them, but dogs are not an example of Autistic people—neither are cats. Still, there are interesting parallels to consider between how humans and dogs interact and how allistics and autistics interact.
Dogs are an example of animals cohabitating with us who do not always speak the same language we do. Yet, while many humans bend over backwards to understand the signals and communication a dog is sending them—and, no doubt, also experience some frustrating times—many allistic persons will not extend autistic persons the same courtesy.
Autistic people are not non-human animals. We are not aliens or robots. I do not think it is too much to ask others to extend us the same courtesy, grace, understanding, and empathy many humans extend to their fuzzy (and non-fuzzy) companions.
Most dogs have a clear warning sign when their boundaries are being crossed: they growl. Those dogs that do not feel they have the ability to communicate when they are stressed or upset—the ones taught not to growl, for instance—can easily get pushed past their limits and lash out before any human knows what is happening.
One self-triggering thing I used to do as a joke-in-poor-taste was when my service dog, Yukionna the Great Pyrenees, would be trying to communicate something to me and I could not understand. I would respond to her in such times by saying, "Use your words."
This is something I did to myself! Sometimes the gust of wind comes from within, I guess.
I found it amusing because it was so absurd to insist to her that she speak English, but it also upset me at the same time—this is literally what is said and expected from minimally-speaking autistic persons. And this continues to be said to any autistic person that loses the ability to communicate in times of great distress, myself included.
Before continuing, dog tax (alt text included):
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| Yukionna the Great Pyrenees |
Alexithymia is like emotional agnosia—difficulty in recognizing and describing emotions. I honestly never thought this was something that applied to me, but through therapy, I have realized that when I am on tilt, it's a struggle to communicate anything or even make sense of what I am feeling.
Those of us who learned how to survive independently of any autism-specific supports have frequently been punished for our "growling"—sometimes literal growling, for that matter. We have learned that our reactions are "too much" or "not enough", that our feelings are "too much". And we bury.
The more we can examine ourselves, process what is happening, and work through what affects us, then the more we can self-regulate internally as well as externally. We dig down and start to build a good foundation. Still, we "know" that the most important thing is to regulate externally more than anything.
Or else we will be punished.
Maybe we will be explicitly punished by caretakers, but just as likely we will be punished socially; we will be ostracized, pushed out, be unwelcome. Ironically, we learn that expressing ourselves is the "problem", because we express ourselves differently.
We end up feeling like there is not even a hope of translation from our language to the allistic ones, because our language gets beaten out of us—sometimes figuratively, sometimes literally.
There is an ableist notion that what really separates humans from animals is the ability to have complex thoughts in the form of speaking aloud. For autistic persons, where we frequently struggle to express ourselves and sometimes are entirely nonspeaking, anyone holding that notion is someone who believes we are less than human.
"Use your words or else"; the "or else" is usually silent, but we get the message. Strange that allistic persons cannot get our messages, that they rely on language they do not even employ accurately themselves.
Our language includes our "weird" stims, our "overreactions"—and our "underreactions" too. We get accused of faking it, of hypochondria and malingering, of being uncaring.
"That doesn't hurt!" as we are crying in pain from the noise of the fan.
"Stop being so dramatic!" as we flee in terror from the vacuum.
"Why do I even give you anything?" as we fail to successfully convey our joy over a present.
In elementary school, I used to dance around and sing nonsense syllables, vocalizing as I'd walk home. I forget precisely when I became aware of how "cringe" I was being, but I no longer sing even published songs in public and dance is nearly always beyond me.
Both dancing and singing bring me more joy than most things in life, but I am also dyspraxic and clumsy, so dancing with others is more than a challenge to me. There has been enough social conditioning over the years to make being public with either to feel like a transgressive action.
Years later, I learned that from the time I was dancing and singing home, I was called "R****d Richardson" by a positive number of persons in my town.
Don't forget, I'm one of the "lucky ones". I'm one of the self-regulators, a person who did not realize they were autistic until they were 16 or 17 and who did not get formally diagnosed until their thirties.
As much as I wish I had my current understanding and self-knowledge much earlier in life, I am appropriately afraid of the horrors of the only insurance-approved "treatment" for autism: autistic conversion therapy torture—ABA.
And ABA is the approved one. In America it is the approved one, that is. So much so that many presumably well-intentioned folks are forced to claim they are ABA even when they are not in order to allow families to get help and support they could not afford otherwise.
As bad as ABA gets, there are far worse horrors which mistaken parents and abusive parents have perpetrated on their children. I am confident that my parents probably would have stopped at the doctor-recommended torture in the 80s with no reason beyond common sense to not believe what doctors were telling them.
In fact, I had a pretty reasonable pediatrician from all accounts. I do not know if they suspected my speech issues and other behaviors were autism, but I do know they gave my parents the advice to let me eat whatever I want so long as I was eating. I am grateful for that! Talk about a good way to put me on tilt three times a day otherwise.
I cannot help but grieve for the children who have had to experience the other horrors marketed as either preventing or "treating" autism.
A short, incomplete list: for those who do not get vaccinated, for those who have been forced to drink bleach, for those who have undergone chelation therapy and many other unnecessary medical procedures with the intention to treat autism that have no relation to autism.
If some of those feel pretty familiar to you during the current global pandemic when you hear them, please know that the anti-autism and anti-autistic movements and organizations have a very solid foundation and have been hard-at-work for a while. These past few years they have been doing quite well for themselves.
Thinking about them further will put me on tilt more than I would prefer, so let's wrap it up here.
Remember, meltdowns are frequently the result of the boulders we are bearing, but they can appear to be the result of the final straw instead. The avalanche that follows is all we can do to survive and keep us from being crushed publicly, but instead of being crushed, we end up horrified, embarrassed, and regularly ostracized as a result anyway, even as we have no control over when we can no longer continue on.
I hope you found this helpful. If you'd like to help me more regularly write essays and autoethnographies about disability, autism, and more, as well as increasing the production-quality, please consider buying me a coffee. If you can't right now, then please share this article.
Further reading:
The original Twitter thread. Many great replies and quote tweets of other autistic persons sharing their experiences. Twitter.com/ZeroWrites/status/1500489018563350534
An article from the American Kennel Club. "Why Dogs Growl and How to Handle It"
An article from Carol Millman comparing ABA and dog-training. This article is widely shared and one I believe is really worth reading. Spoiler: ABA is worse than dog-training. "Is ABA Really 'Dog Training for Children'? A Professional Dog Trainer Weighs In."
Another Twitter thread from me on how ABA fails all the fundamental principles of bioethics. Twitter.com/ZeroWrites/status/1385720871910789123
Any time I speak about ABA, I like to include this article on determining if a therapy is harmful for one's child. Again, if the therapy is ABA, then it is bad, but in reality, sometimes they're only called ABA and they are not actually putting children through conversion therapy torture. "How to Tell if an Autism ABA Therapy Is Harmful"
Thank you for reading! Please share!
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