Dichotomies of Functionality

The following post includes some very personal information. I’d appreciate it if those who know me in the “real world” not use it against me or judge me for sharing it. This is a hurdle I’ve struggled with traversing, when it comes to writing about being autistic… being truly open about how it affects me. So, here it goes… on 12/15/14, I made a comment on Diary of a Mom‘s page regarding functional labels and how the spectrum is fluid & broad, not a set scale:
“The problem with those labels is that not everyone fits into them at all times and it sets unfair expectations and requirements. I range on the ENTIRE spectrum, depending on the situation. All of the ‘types’ apply to me at some point. And every autistic person has the potential to decompensate enough to hit lowest end of the spectrum or bounce back enough to hit the highest end of the spectrum (passing for NT), given the appropriate set of variables to trigger that inability/ability to process and carry out executive & sensory functionality.
There are so many parents who say I am not like their child and couldn’t possibly understand what it’s like, simply because I can type as I do.
Meanwhile, these parents aren’t around when I am rocking, smacking my head against a door, clawing at my legs, sobbing uncontrollably, unable to sort my own thoughts enough beyond just wanting to do anything and everything I can to get up and run far away from the environment causing this drop in functionality, let alone being able to sort them well enough to speak OR type.
They’ve never been around when I have wet myself because I can’t process executive functionality as simple and taken for granted as: ‘Hey, your body needs to urinate right now, so you should probably prioritize getting up and going to the bathroom, despite all your spoons being gone and you not wanting to switch environments or sensory input/output situations.’
They’ve never been around me when I can’t sleep more than 2-3 hours a day for more than a week straight and forget to eat for days at a time, unintentionally causing myself to eventually pass out from sheer exhaustion.
What label does the dichotomy of these (and many more) situations, inhabiting the life of the same person who can eloquently advocate online (when given the right set of variables) AND manage handling Disneyland not only regularly but also on one of the busiest days of the year (given the right set of variables AND accommodations), say about my ‘autism level’ or place on the spectrum?
The spectrum is fluid and no one person is static upon it. People need to understand this. Just as non-autistic people can decompensate and be an emotional trainwreck after a traumatic experience, autistic people can also completely shut down due to trauma, based on variables within our environment, our past/recent/current history of required sensory input & output, and our general self-awareness and ability to mitigate effects of said trauma and input/output requirements.
We are autistic individuals. There is no need to label and set up expectations beyond that. So many people are fond of the phrase: ‘If you’ve met one autistic person, you’ve met ONE autistic person.’ …and then they turn around to slap labels on us, as a means of saying that there are only a certain set of connected ways autism can manifest within our lives at all times. Meanwhile, you and I know this to be completely untrue.
Functional labels – including Aspergers – don’t serve any purpose other than dumbing things down for those who don’t WANT to understand. Let’s reach out and educate people to how the spectrum TRULY works and WHY it is a spectrum… not static, but constantly fluid.”
And with that, I’m off to pick up my media badge for NAMM, nerd out over musical instruments, and hang out with friends. And hopefully run into Stephen Carpenter (Deftones’ guitarist). Even more hopefully… be able to manage navigating the crowds, when I’ve been having almost daily panic attacks for a few weeks straight. Fingers crossed.