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.
So my reading skills haven’t been the the best this year but at least I am reading. I’m happy I’m at least up to 9/25
To help me get a little focused… I decided to go thru a daily devotion. I was watching a friend’s posts (instagram or facebook) that seem to provide a good little amount of encouragement to get through the daily grind of the day. So I decided to inquire about the messages and located this book:
So the book starts off really well. Acknowledges people are going to be in different places and that the book is not going to provide all the answers. I like this. I didn’t need someone to solve my problems. I just needed a little focus at looking in the biblical text and connecting with God. Also, the daily chapters are short, usually with 1-2 biblical verses and 1 take away or action you can do.
However, as the book progresses, stuff gets very cliché. The chapters starts to lay out things in a very organized manner that starts to sound more like the formula that the author didn’t want to provide in the beginning.
So while it is a helpful concise book, it is not everything I had hoped. Still useful-just not super amazing.
Recommended? — Eh, sure, why not. Average.
So in my last blog, I talked about my personal struggles about possibly being autistic along with my son. Self-awareness is beautiful and so I wanted to talk about what it has been like discovering this part of my identity.
First– I have found people like me. (lol I can now sing the sound of my people–ARROOO! ARROOO!) They have sensory food issues (i was not kidding how horribly i hate avocados/mushrooms and mustard), qerky fun things about their personalities, dye their hair or do their makeup in the most amazing colors ON PURPOSE (not for style but stimming) and have similar struggles like when I watch movies where I get stuck in the movie world and it’s hard to transitions out without acting like the movie. And other autistics don’t mind if you emotionally need a break or if you’re going through a burnout — they get it. No explanation needed. And no one is “putting on face.” or “playing a game.” We really don’t know how. Neurologically speaking. Most of wear our hearts on our sleeve or if we do hide, we get really good at it. And even if by some review of sorts I’m NOT at least neurodivergent (not sure how I feel if that were to happen…considering things) — everyone should have an autistic friend in their life. Support and love them and learn to see a little of their world. As Agony Autie says (WATCH HER VIDEOS!) — it’s a privilege.
Identifying as autistic has also helped me understand some very major aspects about myself as a child as to why I just never felt like I ever fit in. Oh, wait, not fitting in, that’s a qualifier without me even realizing it. I am general an extroverted social person. But I can only slightly read people and NEVER know the right response. Or don’t have the time to process things. Check more on the autistic list.
Item Two: my friend count was low. Not bad. I had really great friends that many I am still friends with today. But no true one BEST FRIEND. When my mom got sick and I had to find a friend to take care of me because my dad would probably not be able to–I was scared because I had no 1 person (you got two choices anyways, but still.) And frankly– a lot of them I rarely hung out with outside of the environment I knew them in.Band Geeks (loud and proud) but never got along with band people. Was in honors but did not mesh with the popular crowd. I did girl scouts which I know struggled with keeping friends there because some girls used me (don’t worry I have a friend I live near I am grateful–but she’s half church half scouts so I don’t count that lol.)
Three (which will lead into the next part): I analyze and process SEVERAL THINGS A DAY. I am the truest sense of the word Curious. I like learning, reading or getting into the details. There were many times i thought to myself or my own mother said “people don’t think about this all the time, do they?” As an adult I have said this WAY more often about the simplest of things in which I revealed to my therapist who noted her head with that expression “Oh, NOW I see what you mean…” They usually get kicked into gear because of something I see or hear.
Lastly I am so excited to travel thru adulthood knowing my qerkiness was not just a phase. Remember me mentioning about having eye contact trouble? And expressive language issues? — I STILL struggle with those. I could never figure out why. A neurotypical person should be able to practice & get better as they work through something. But I didn’t. And i know friends & co-workers hardly have noticed. I just thought they were bad habits or me with just bad grammar. But then i realized I communicate better using things other than language. (I felt like music filled up your whole body vs. speech and therefore auditory because the things that mattered..oh wait, sensory stuff again…sorry 😛 .) I excelled at being in school. Task-oriented functions are my speciality. I’m probably an expert on data entry (patterns). Hey-I even tried telling a guy I like him by saying ” you have to listen to this song-because it will tell you how we should feel about each other…” Yep. That was me. And I wasn’t 8. I was 18.
So i hope i haven’t bored anyone. Or scared (definitely something you do not need to be. ) Just trying to be honest. I have a habit of being too honest before. Oops..
If 5 years ago you would have told me I was going to be writing what i’m about to say–i would have looked at you with the utmost confusion. 5 years ago I knew nothing about kids, about development and speech milestones or about sensory issues or …Autism.
But I’m tired of hiding behind hushed words. I’m tired of people telling me “my kid is fine” until he falls off the 5yo playground equipment because the toddler stuff doesn’t stimulate him enough. I’m tired of wondering where his sensitivities may have come from (so I can understand them) while I get nauseous around avocados and scrap off each topping of a pizza just as he does. Yes–I feel my son may be autistic and that I may be to. And yes-I’m seeing a therapist as is Austin (several in fact) to figure out if this is it or something similar on the neurodivergent spectrum. But let’s go back a little, shall we? Autism is not “just” those things.
It all started with a book Nuerotribes by Steven Silverman. I wrote about it here. My mind was turned on to how people could be so negative to those who are just “different” and the history of something I didn’t see as weird or diseased or needing to be fixed. I grew up in a house where all mental processing was accepted. My dad was bipolar and had infarct dementia along with his diabetes/Parkinson’s. My mom was a grade school teacher and was trying to escape her bad self-esteem issues alongside parenting really 3 kids. (i’ll keep where that came from as private as possible.) I grew up liking classic music, never seeing a major horror film or concert and protected by a parent at school who knew how to address my every need in learning. I made it to GATE despite almost not qualifying for language. That being said — I’m pretty geeky and nerdy and have been My whole life (not sole descriptions of autism btw.)
But then I saw a video by Agony Autie about being autistic. And another. And more videos by Neurodivergent rebel And learned an old friend from church had an autistic daughter. I learned autism isn’t a disease that needs curing, but a different way of communicating and thinking. I learned about neurodiversity (something I LOVE). I learned that we need to provide more support for the autistic community and just not drop them off in adulthood to fend for themselves or criticize their behavior. Then all these memories and connections to my childhood came flooding back. Something I had been trying to reach for a very long time since i have a hard memory block for what happened before my mom got sick when i was 12. I found pictures like this where I see nothing but a mirror image of what my son asked for the other night at the table.
See me?? Hands over my ears? Yep–Austin begs me to hold his ears and head like this when he has had too much. Occasionally when he’s trying to process a new noise.
So you’re probably thinking “you’re crazy Sara.” “you’re not autistic.” “Don’t worry you’ll be fine.”
Well first, I am fine. There’s nothing wrong with me. Second –I’m not crazy. There’s A LOT of things i cover up (technical term “masking.”)
1) I actually do have a problem with eye contact. I remember doing speeches in 4th grade and it was something I always missed (as well as talking too fast.) I learned to mask really young (typical for girls) and remember being told eye contact is super important so I forced myself to do it. It requires a lot of energy…but i’ve been doing masking so long I don’t even know if I can turn it off. What it feels like? – Like I’m staring. Even if it is for a couple seconds, I feel like I have stared into someone’s soul. And if I can’t pull away– i’m sucked in staring. not my fault I just haven’t satisfied my curiosity and thoughts about what’s going on with that person.
2) Transitions are SUPER BAD for me. I mean extremely super. Especially sudden change or if I have established myself in a good place (I.e. a Disney Cruise). Or if my routine (or what I think my routine is) gets adjusted too much. I sit and stew on exact words said and i go into a downward spiral of depression and anxiety. I’ve already been pseudo-diagnosized with Adjustment Disorder and possible PTSD. People that know me know i’ve been through a lot in my life before I was even 30.
3) I prefer to use music to express emotions. Blaring it so loud I can tune out the world. I sink into the notes and I don’t even register what or who is around me.
4) While I have PCOS (comorbidity occurs a lot with autistic, especially things related to healthy gut) which provides me with excess body hair and limited head hair– in college i plucked out 2 inches of hair on my scalp. Don’t. Believe me?-see my first passport photo. Why?-Because I didn’t want “fly aways” and I could see them on EVERYONE’s hair. I can still picture it now sitting in a dorm building meeting looking at peoples hair.
5) I fidget. More than I realize. I originally thought it was just habit. But when I’m dealing with stressful stuff–i click pens, spin fidget spinners, and tap my fingers a lot. Today I pinched my fingers together. It’s a stimming technique. And I guess so was my dancing, singing, music playing. Today I bounced up and down on the curb at Disneyland because the parade had just come thru and I was trying to watch my son thru the whole thing.
4) It is very likely I have expressive language issues. When I was in grade school I had grammar/spelling issues. I had trouble catching up to my thoughts racing through my head. I also titled my head when learning how to write handwriting. I do some of this still. Austin likely has this too… He also has clear speech delays, doesn’t express things that are personal (like “mine” or “i like”) and lacks some major (beyond normal) focusing abilities.
Don’t feel pity on me. This is a new experience and I’m learning a lot of things I’m very happy about like why I would get crying upset but not a really anxiety attack. It’s because my cooling skills were gone and I had “lost all my spoons.” And I have talked to my therapist who while noticed I was talkative and social could see why I may have dipped my toes in the rainbow you see below. I could go thru all the categories and show you where myself and Austin struggle with things. But that’s a whole other blog post. 🙂
So there. I have put it all for all to see/hear. Some may not be surprised. Others will criticize. But I’m getting the help I need and I am 150% and more here for my son. 🥰
As a goal and personal dream — I decided to dive into some really thick reading this year. Mostly because I have wanted to read this books for a while being a fantasy fan in addition to looking at them sit on my bookshelves in sorrow.
So I picked up Game of Thrones and the beginnings of Lord of The Rings. Luckily the LOTR series can really start off with The Hobbit which I will read first since its been a few years since I read it last (high school.)
So game of thrones is really REALLY THICK reading. I’m only half way thru. But it’s good. Is like the show and more details. Like details of their religion, layout of the houses and who is related to who and whatnot.
So i know lately i have been spending a lot of my time writing on the books I’m reading. Its a goal of mine to not only keep up on the reading challenge I set my mind to but to have a way to remember it in addition to making sure I write on some regular basis.
However, I realized it is time for a non- book challenge post *ish*. And I think I will go back to my old trusty topic: theology.
So one of the new “books” I started is a daily devotional called 100 days to brave by Annie F Downs. And while I am sure I will have a post about the devotional and all its lovely qualities– I wanted to talk about the importance having a daily devotional. Or at least the intention of having one.
I have never been an intentional practicing Christian. At least not after college while trying to have a working job & more so after trying to keep a family and household together. I do believe the Spirit “blows where it wills” and that sometimes as humans we need to try and catch on before it flitters away too fast because life keeps moving (forget the fact that life comes from the Spirit but anyways…) So whenever things like “read this daily for spiritual growth” come along, I usually get annoyed, bitter and judgmental. How dare someone tell me how to connect to my faith!
Well, I should remember this post when I say things like that. For it is the gentle little focusing that helps me digest the world. It is the fact I am intentionally taking time for thought that helps me get past the sullen sulking self that leads to self-loathing, sickness and separation. Three things that can take away life if you’re not careful. And don’t get me wrong, its rough at first. Especially if you’re trying it for the first time. Sometimes you have to read sections you don’t like, follow a train of thought you can’t handle, but trust me, in the end those little devotional or practices to set time away save you greater time in the long run.
So next time you think that little devotional is not for you–think maybe the coffee you’re drinking isn’t the kind of “jolt” you need to keep yourself going. It will for sure last longer than the caffeine rush.