(sorry for the posting errors-new system…i have fixed this…)
At this time of this writing, it is 00:40
It is after midnight and I know full well that in less than 6 hours I will need to get up, be ready for work and get my kiddo ready for school. And while staying up late has been a staple in my life–it was not until recently I looked up into the relationship between sleep, ADHD and autism.
Just a general search on google brought up an article on ADHD and sleeplessness. (Click Here ) Now grant it its one article, but After reading it, I cannot tell you how many explanations are directly applicable to my situation. I can also see how the science fits because of my brain neurology and body chemistry.
First: GETTING TO THE BED
My brain is still going several minutes after I had to lay myself down for the night. It is a struggle and I have to tell myself “GO TO BED” or I have to be almost to the point of nodding off. It gets better when I have a schedule and a morning commitment (so during the week) because I know I have to go before I’m actually tired. But if I don’t have somewhere to be– I go to bed probably after 1am on a regular basis.
Second: SLEEPING ENVIRONMENT
It took me several years to admit and enforce a quiet, dark, no electronic in use sleep environment. I still have a problem when I get stuck playing a game. And several times as a kid I had to play a tap player, CD player or as an adult set a timer to paly music to help focus me to sleep. Right now I do have several black out masks, including one that links to music. If I am not 100% completely comfortable, I cannot sleep. So temperature has to be lower, no socks unless absolutely necessary and i have officially “stolen” my son’s weighted blanket on top of my normal comforter. I also LOVE a dog sleeping on my bed, so i make sure I’m cuddled up next to my puppy-dog. Before doing this–I realized i would toss/turn. If the temperature is not right I cannot sleep at all. I’m trying to remember what I was like as a kid, but my mom said I was sleeping in large beds because I move really young. Me getting good quality sleep is rare. What I love best is that my husband has supported this and understands that a lot of health problems can improve from just good overall sleep.
Caffeine hasn’t always been a problem for me but now it is. I noticed closer to bedtime if I drink high caffeine, the harder I can shut down. Watching movies that are psychological thrillers or horror are also a problem because my brain is still processing them hours after I see them. Its best me just watching fun TV shows, shows I already understand (like series) or a fun movie or calm movie. Dreams can be triggered with anything too emotional or too trigger oriented so I try to watch for those too.
Fourth: WAKING UP
Getting up is HARD for me. I’m talking 3-4 alarms (bug my husband) sleepy half-awake for at least an hour before I’m really going.
I also do NOT like to be awakened early suddenly. I can be very unpolite that early in the morning. I have even told family and friends to have minimal conversations and nothing serious before 9am due to this situation. I even told my mom “no talking to me before xx time” when i lived at home and it made life a lot better.
So learning about ADHD/autism and PCOS in the last 5 years has really showed me where I fit in. The issues i have with staying awake, feeling like I don’t get enough sleep and having trouble waking up despite 10 hours of sleep are all related to these health issues that have been with me my whole life. And while definition does not change my reality– it does help me search for a community more supportive of my needs (up late all the time) and to search for more efficient help.
Have you ever thought about your sleeping habits? Comment below! who knows-maybe you’ll get some insight on a sleeping habit you’ve been trying to work on! 🙂 zzz…z…zzz..
So for the last year or so, I have been trying to understand who I am as a person and why I do the things I do. I talked about in a previous post here. So some time has passed and I have been able to move a little forward in looking at my behavior and what it means.
First, my therapist has not been able to full diagnose me as “autistic.” She no doubt knows I identify as such, but due to the fact I cannot remember some childhood elements, lack the parental verification and appear to be “too social”, she can only diagnose me as unspecified nuerological developemental disorder. We walked through personality quirks, sensitivities I have, mental processing I struggle to move out of the way to interact on a daily basis. I fit probably 80% of the diagnostic definition of Autism. And that’s okay. I am still accepted into the community because 1) i still related to almost everything adult autistic women are going thru and 2) a lot of people get this when therapist don’t see the whole picture. Luckily, my therapist understands my identity and doesn’t see it as unhealthy. I am also coming to terms with it–I fully admit that there are elements of my history that are just complete blanks because of the trauma I experienced when my mom got sick/dad died at age 12-14, so it makes it difficult to give me a diagnosis that requires knowing some of these facts.
However, one week I brought up how much I talk and my thoughts run when we having our meetings. We talked about other things I can remember as a child and i suddenly realized it wasn’t just autism playing around in my brain. My therapist asked if I had ever considered I may have ADHD as well.
I was honest-I had not. I am pretty good at multitasking. Also I was in honors classes from GATE In elementary to high school. However–as I walked thru the problems I ran into as an adult, the memories of me in class as a child getting bored or having trouble focusing to the teacher taking about some boring topic–I realized my therapist was dead accurate with thinking this. Luckily for this development issue-there are several tests–which I took (one I got so completely bored I couldn’t control anything) and my therapist graded one and pointed out I am just above the normal range for focus and attention for a women of my age. Ironically–it also makes sense of why CBD oil worked for my temporarily (it really helped shutting off the constant trail of thoughts in my brain) and why I constantly talk like a long run-on sentence.
Now-I’m going to talk about why for so many-finding these diagnosis can be extremely difficult. Why some spending years getting these answers why others do not. Our society is really good at only pointing out the extremes and if its not serious enough, people don’t put enough interest or invest enough support. When I first got my diagnosis’s for (pseudo) autism and ADHD, I was so happy I could talk freely with someone without trying to mask or hide my identity completely (don’t worry I don’t do it intentionally half the time and i eventually share with others because I have learned I do not need excuses anymore.) But with this my therapist could see a benefit for me to consider medication. At home I was having breakdown, struggling to free my mind and my executive functioning is so poor right now–I will spare you the details (for those of you who can relate to it-yes, things haven’t gotten done in a while.)
So i took my therapist advice and went to Kaiser to attempt to get medication. I set up a appointment with a Ph.D. psychiatrist and waited several weeks (something I had to fight for because I was seeing an outside vendor approved by Kaiser instead of an inside doctor.) I walked into the clinic, filed out this survey asking several mental health questions–questions I could easily roll my eyes at but some serious– and a gentleman called me back into his “office.” Let me tell you-that was a nightmare. You would think if someone tells you “i believe I am autistic and need ADHD medication after meeting with a therapist for a year” the doctor would go “okay, let’s talk meds and what they do.” But no-I mentioned my dad was bipolar, so I spent half the appointment defending that I wasn’t. An argument that 1) I didn’t feel like having and 2) had settled several years ago. The other half I basically shut down and shut the guy out because he had made me so upset. I walked out, upset, tried to keep myself together until I got to the car to spend a day in my happy place (Disneyland) but had to cry it out for a good 30 minutes before doing so.
Now, you’re probably thinking “wow Sara-this is ridiculous!” And you would be right! But let me tell you–this is not something unique. Not only are staff members on strike because of Kaiser’s lack of mental health care, but also autistic and ADHD women are typically pushed to the sides because we do not resemble the standard narrow image of what people THINK autism and ADHD should look like.
We need to stop this. We need to see people, listen to the stories, their pain, their near types and behaviors and not approach people as mutated aliens with no intelligence or understanding. We need to listen to people’s struggles, walk along side them and if we can see light where they can’t, point them in the right direction.
So while this diagnosis dilemma is still ongoing– anyone else had the same experience? Feel free to vent, to tell your story. Keep in mind if you feel you need medical or mental health assistance, reach out to the professionals.
Anyone who knows my husband and I knows we like to go to the movies. My husband has a screenwriting degree and really I come along for the ride. Why not, right? It’s also an escape from the craziness of real life. But connected to my issues with transitions, I thought I would discuss a problem I’ve been having every time I see a movie.
Now this is going to be hard to explain. Mostly because its almost like an “out of body” experience. Only after talking with other autistic/neurodivergent adults did I understand what it is. It’s a transition issue. No matter what kind of movie I see (horror/action/romantic comedy), I come out of the theater still living in the world of the movie. I feel I have sucked in the soul of the movie or the sense of being from watching the characters. I know it sounds weird, but while it is like staying the fairytale you’re watching on TV, it can be very dangerous if I see a thriller or horror. For example–seeing Midsommar at 11pm on a weekday was extremely dangerous because it was a psychological thriller. It took me watching goofy kid movies to sleep. Watching A Beautiful Day in the Neighborhood with Tom Hanks was amazing but it really tug on my heart strings. I came out of that movie with enough time to walk to my car parked on the other side of the parking lot of a mall so I was able to decompress a little.
So my therapist explained it is similar to having issues transitioning from one task to another. You see-when I watch a movie-I am in the large dark theater, typically with surround sound and so all my senses are engrossed in the movie. even to the point where the popcorn and sodas are necessary to function and digest the film. So I get sucked into the world (which takes the 1.5-3 hours of the film) and therefore when I come back, I am actually adjusting my senses back to “reality.” What’s crazy–I didn’t realize I was doing it until I recognized myself kinda “acting out” recent movies I’ve seen pretending I existed in their world. Current movie transition/connection issue?–the deep personal links the music from Frozen 2 has with my personal life and therefore I have been sorta half stuck in that world. Yes-i have almost started cosplaying Anna and know all the worlds to the songs. Grant it–it doesn’t help that one is Disney, a huge interest for me.
Any else relate to this issue? Don’t worry-no judgment from me. I was just trying to figure out why I do it or what triggers it (even though its almost every movie now) so I can better prepare myself after a movie.
Do you ever try and recall your first memory? Or feeling? Just try–thinking back as far as you can go. Guess what? — I really remember mine.
I was little, can’t remember how old, but my mom for what I felt took me to a nearby babysitter for some reason. I remember feeling not scared, just off. And that I had to figure out how this place worked… instead of just letting myself go and play. They gave me pop cycles, which I to this day still hate because they’re sticky but also I can’t bite down on them, I’d rather just drink the juice. I mean, I wasn’t sad or upset. Just…there.
The thing I remember being in a bunk bed, lower level for a nap. I was confused because I was happy it was a bunk bed ( I always wanted one because I have to change how I sleep… can’t sleep facing the end of the bed they say ( so exactly like my son it’s super crazy similar.) yet I was not sad but … maybe scared… just unsure how I was supposed to feel about a place I liked yet wasn’t mine. I was in middle ground, in limbo. In a place I didn’t understand. And that today is where I never like hanging out. I like to know my environment. Know the limits and the rules and play within certain guidelines. Complete freedom doesn’t scare me…but it is a little chaotic, unhealthy and dangerous.
So its weird because its not a significant memory yet it stands out so clear in my mind. I really don’t have any main memories until I’m older-like elementary school age.
What’s the first thing you remember? Do you want to remember it? Is it something that builds who you are today? Comment below!
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.