Au-Some Afterthoughts 2020
Today is Fat Tuesday. or otherwise known as Mardi Gras. It is a celebration that Christians honor in preparation for the upcoming Ash Wednesday and Lenten season until Easter. It is one of the few holidays where excess is not only encouraged, but celebrated because Lent comes the very next day, depleting the excess almost immediately.
So now that I have discovered my autistic identity— I am trying to look back at celebrations to see if I can see my autistic traits in hopes it will shine some light on autistic processing. Mardi Gras was not a focus in my house until I was an adult. I would hear references to pancakes sometimes but since I preferred waffles, I never thought it was worth my time. Also, the bead throwing had different meaning for me (Disneyland handed out beads and my friends made stars by twisting them around) so we never really noticed the celebrations. As I got older-it was tiring to think of Fat Tuesday and I only enjoyed it because I could eat whatever I want for one day. I am kinda glad of this because I think the encouragement to intake in excess would have fueled my worrisome autistic nature and meltdowns would have appeared more because of the immediate change the next day. Speaking of which, let’s talk more about Ash Wednesday and Lent.
Now, typically at Lent, one is asked to sacrifice or give up something they desire or that blocks their path towards God/Christ. For an autistic person, they may already have their routine and path which could involve already sacrificing something so this makes a lenten practice hard. A common alternative is to do a service project, but consider many autistics struggle with social situations (i.e. I have a major trigger with nursing homes), so this may be a road block too. Finally, enforcing a routine about giving up a food or factoring in a new practice could trigger executive functioning issues attached to it (trying to remember to do devotionals, get upset when you miss said devotional and then shut down/give ip because you “failed” Lent. Yep. Thats what I have felt like.)
I don’t think that the 40 days Jesus went to the desert was meant to break himself down. It was to prepare for his coming death and resurrection. So for an autistic person–preparation may look different than the neurotypical Christian.
As an autistic– there needs to be a lot of inclusive and acceptance. I think doing sensory immersion events with ashes/oils during this time is a great way to include autistic people in Lenten worship. Another alternative is providing quiet sanctuaries or prayer rooms so that an autistic person can experience worship or devotional in the best sensory way possible. In regards to sacrificing– I know just acknowledging a change in one’s environment may be enough. For example, for me, I have difficulty with transitions. So maybe my sacrifice looks like spending a Friday night indulging in self-stimming activities so that Saturday, I can doing multiple things in a row or letting someone else control my schedule. It is sacrifice of my desire to refuse the change.
So hopefully this gives a little perspective into the world of an autistic person and a more open eye to what a “sacrificing for Lent” looks like 😀
(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.