This is a lower resolution screenshot taken from a brief summary video I was able to download from my MRI in October. What is shown here, according to the surgeon who is treating me, is one of my disks which has slipped behind a vertebrae. And what you are seeing is a picture of what the spinal cord compression looked like then.
As I have considered so many times over the past few weeks what I would like to write next, I think that so many of the words that could have spilled across these pages were happy to sacrifice themselves to the efforts I have been making to pull pressure off of my nervous system wherever available. Maintaining this space here is one of the least necessary things in my world.
I have focused most of efforts on meditation, yoga, showing up as Tony’s aid at school, making time for my own therapy sessions (currently we’re working on medical trauma), and otherwise supporting the immediate needs of my family. You would think perhaps in all of this I would have considered what I would prefer to say about my own recent Autism diagnosis. And I have. Many times. I have turned it over and over in my mind, and it goes something like this:
Two Autistics walked into a bar…and couldn’t agree on much of anything. Not whether puzzles or puzzle pieces are insulting to individuals with Autism (I personally love them and spend time on a puzzle app daily, yet others find it degrading to see puzzles used as symbol for Autism) nor whether every Autistic needs PT/OT/ST/ABA/DRI/PRT (not everyone on the spectrum does but many will). Certainly not on whether or not every Autistic should get a diagnosis.
I am a person who sometimes says uncomfortable truths, having either missed or overlooked the desire for others that they should remain unsaid. So what I will say here is consistent with that personal theme and is simply this: only if a person needs a diagnosis to obtain services and/or only if they want it. The truth is that there is still so much stigma, so much discrimination, so much ableism that a person has to consider carefully for themselves if they want to actually walk that road if they don’t have to. As myself and any other Autistic who makes it to adulthood without services demonstrates, therapies aren’t necessary for everyone.
I have a degree. I had jobs with titles and non-entry level responsibilities (though they are currently super irrelevant given the current needs for our family). I know I experienced some things these last several years before I was diagnosed just from therapists who clocked me as possibly Autistic after working in our home that gave me considerable pause as to whether or not I would ever want to actually have that as an official diagnosis, so I will never think poorly of a person who decides that isn’t the battle they want to fight for the rest of their lives. For perspective taking, neurotypical witnesses corroborated those differences I observed and validated my perspective to me and others, which was a gift. Gaslighting in these types of situations can be a thing far too readily experienced for Autistics or other individuals deemed to have any sort of disability.
Not everyone will have that luxury of choosing whether or not they can or even need that type of diagnosis. Those decisions will be made for them, either because they have to be because services are necessary or because they had a very aware parent or someone within the community who pushed for it when they were too young to have legal standing to decide for themselves.
Hiding or masking doesn’t change what a person is, who they are, or what is going on with them. In the having of this particular diagnosis, even actual medical problems can be written off as more likely being just “in your head” or just a problem with your sensory processing until otherwise incontrovertibly proven. Every capability even sometimes has to be proven, and often then some will still be discounted or disbelieved. Those challenges won’t just vanish though in the absence of a diagnosis if a person can still be clocked as possibly Autistic for any reason.
I maintain what I always have: we are way too focused on labels, way too focused on determining who has value to our society and who doesn’t by them. I am a person who believes in love and compassion, in finding safe spaces for everyone within the community. I think we should just see one another in the context of what we can and can’t do (with minds fully open to seeing what actually is possible there), what our needs are or aren’t…and just leave the stigma as a relic of the past. Maybe find it in our hearts to support what is or isn’t without judging it.
As a young woman in my 20’s, nobody thought of me as Autistic. I was thought to be a bit reserved, a bit of a rebel at times, somewhat eccentric, smart but a bit too blunt on occasion. I functioned in the workspace in a manner that my competence was never questioned. To me I have always found it an oddity of our society that a single diagnosis, or even a single impression that led to the wrong conclusion, can lead to such drastic revisions in how a person is seen or treated within the community for a considerable time or even the rest of their lives. Sadly, I think a diagnosis can sometimes reach an erroneous editorial hand into a person’s past as well in ways that can be detrimental to the well-being of the individuals involved.
As I get ready to head into a more involved surgical procedure, I am going to need to take some time off from typing. Perhaps then when I am more recovered I shall type up some more loose ends here. Until then, I am wishing each of you a fabulous holiday season, whatever it is you celebrate or even if you don’t. Much love, Ari.
