I’m going to admit something that people may know but don’t see a lot about me. It’s something I struggle with every time we go on vacation, when we moved and even when my schedule gets altered a little.
Yep. Transitions. I struggle with change all the time. I used to think i was good at handling things but i gradually realized its only the severe difficult thing I can process because I have the ability to separate myself from reality for a little bit. For example– when my mom died, I was able to come home, enjoy a meal she liked and go to Disneyland to let loose. But with everyday change and transitions, I struggle. A lot. I need a therapist for it. Let me rewind to our last major vacation. We were leaving the Disney Cruise Ship, a friend was picking us up and while Austin was crying (new car, leaving mickey behind, etc-he has my transition issues for sure) half way back home, I started bawling in the car. I couldn’t figure out why. I wasn’t hypervenilating or had a raised heartbeat. But I couldn’t stop crying. My body felt as if it was leaving something behind. Something I felt safe in. And it was like getting shocked in cold water. The crying was an uncontrollable reaction. Even though I managed to be strong for a movement to get Austin in his carseat–my spoons were already gone. (google spoon theory and autism.)
Difficulty with transitions is common among those who are autistic. Change affects our perception of our world and our brains and our bodies cannot intake the sensory movement between one item and another. And because our social and communication sensors are overwhelmed or even off– we resort to stimming or eventual breakdown/meltdown and burnout. What happened after I returned home? — I had to go hide, self-care, be left alone and actually snuggle with something soft. I always need a day after a vacation. Not to just get back into the normal schedule–but to make sure I’m in a safe place to digest the change.
So be kind to those of us still trying to gradually work through our transitions. This world seems like its in a constant state of flux and routine is more comforting than chaotic movement. Allow us to be free, to feel, allow us time and space. We will come back . In our own time and way. And we will value and respect what we are given.
So I’ve been thinking a lot about myself lately. Maybe it’s because I’m that age. Maybe it’s just wanting to be myself or at least understand more about who I am. Maybe…just because. I have that right, don’t I? 🙂
So I put down Game of Thrones and Lord of the Rings and started reading some others material. I got a recommendation from a few of the female autistics I follow online and decided to read Everyday Aspergers: A journey on the Autism Spectrum By Samantha Craft. It is very uniquely structured and extremely personally relevant book. I will do a post when I finish it (its 300+ pages so it will be a while)
But I wanted to talk about this one specific chapter (more like insert thought bubble.) Number 37. “Fake it or Break it.” Its a brief chapter about how women with Aspergers (now classified under the umbrella of autism) are constantly in a state of acting or more commonly known as masking. For the author–she talks about this constant process of evaluating people because in order to survive in a neurotypical world, you have to at least fake being involved or you may, well, “break.”
It was the first reading regarding autism that I was fully able to relate to. Over the past 6-9 months, I have been floating around this idea of identifying as autistic. My son definitely has something going on and we share so much in our sensory world that I wanted to explore. And while i talked about reasons WHY I feel I am autistic in previous posts, this whole section was a description of what typically goes thru in my back thoughts in most of my daily life. And by what I mean by “back thoughts” is that these internal thoughts about what people are thinking that happen before/during and after interactions with people/new situations.
For example– when I go to a new place (like the PetCon event in downtown L.A.), I will purposefully hang around the edges (walked around the edge of the event, sat down in a cornered place, etc.) and eventually when I try to break into the invisible social/communication line (by talking to some one about dogs or with another guest why I’m there), I’m either still evaluating what people think of me/my people/things or I start talking so much I push the emotional confusion out for a bit (like a hyper focused individual.) Let’s just say I barely made it thru that day and I’m still processing some things even now (like why I wasn’t included on the stars’ youtube channel with my adorable but totally sensory seeking kid which probably didn’t even register on the person’s mind let alone as something that they had personally done to offend me. Wait-nope, still sad/angry. Moving on.)
I don’t know if I have been doing this ALL my life but i’ve definitely been doing this most of my young adult/adult life. I used to think people did this to evaluate themselves, make themselves better, try to move up the work or social ladders, but it appears I was WAY off. Only recently did I recognize what I was doing because its so automatic to watch others. But if non autistic people wants to realize why women have trouble getting early diagnosis and why a lot of us “don’t look autistic.”, here’s why:
1) First, its a common thing for autistic women to do this because we learned it at a very young age how to survive in our communities (regardless if you’re neurotypical or diverse.) I don’t know if it specially a women/girl thing but definitely in younger girl groups, structure happens and women react on it quick and sometimes in mean ways. (talk to a standard 10 year old girl.) But autistic women such as myself do this as a way to figure out what is being communicated in order to survive. I remember intentionally thinking about other girls at my school and what they were doing to survive (makeup/music, etc–which it wasn’t surviving to them) and trying to buy the right thing or learn the right trick to get accepted. I’m still doing this now-almost crying when they provided a class on lynda.com called “Office Politics” and understanding the dynamics of working in a business world. I struggled hard when I first got hired to where I am now.
2) Second, this is not a verbal/visual thing and it is very easy to hide. For some, it looks like the person is an introvert. For others, it can look like a mental disease or psycological issue. Don’t believe me–ask the countless adult autistic women who have either been diagnosed wrong with a mental illness or have co-existing mental health issues. (I could write many blogs on this i’m sure but as a people/nation/whatever, our understanding of mental health is sorely lacking.) For me? – its a spy sneaky game to me, to watch others, to wonder what is going on in their head and to hide in their world. Yep. I disassociate. Always have wanted to and it doesn’t help there are elements of my faith that encourage this. (its okay–i realize as Christians there are theological reasons why that doesn’t exactly work.) Oh and it’s bad if some one interrupts me. I get personally offended. Get angry. Even though they did nothing wrong.
3)Third–It’s not just wearing multiple hats. Autistic people wear multiple hats because we distinguish between the hats. They are separate identities. Even separate souls I guess you could say (descriptions for autistic people can be…um…not problematic but just… different.) It’s hard to see all identities as one person. At least from my perspective. I struggle really hard right now with even just being mom, wife, employee and me. Yes, that’s true-I have my own separate category. Even though I am all these at once, I am still separate some days in my mind ( Our God-Like quality?-okay, i promise not to jump into theology mode.) And I really only feel like me when I take off every mask. That’s when I’m free. Free to Be. It’s also why I find so much joy in my faith—between me and God, I don’t have to worry about being [insert any choice descriptive language.] Because God’s just that awesome.
Anyways– I hope that this blog can give an insight to how a neurodiverse/autistic mind operates. Maybe it can give a little information for those that don’t think about how they are communicating.