Au-Some Afterthoughts 2020
Disclaimer: I do not claim to be a medical expert or doctor. These are just my opinions about the situation and if you feel you have an actual real medical emergency or have concerns, talk to a professional.
How many people grew up going to the doctor, trusting them to say “yes, your’e sick” and “here take this to feel better.” I know I did. I trusted that all doctors had my best health interests in mind and were there to guide me. However, after spending the last several years in & out of doctors related to myself, my husband and my son, I wanted to talk about something I find interesting when it comes to your health: expertise and advocacy. Today doctors (at least here in the United States) seem to place generalizes over specialities, drugs handouts versus reviewing pros/cons and just trying to push thru their patients’ problems. I feel it is relevant to self-discovery of my autistic journey and my struggles with PCOS. but this does have application across all forms of chronic illness or standard health practice.
So above is a link to one of the several clips the show “Adam Ruins Everything.” And while it is not an end all be all of the health industry, it does give an interesting insight into Western Medicine and its approach to health care. For me, I wish I had watched this show going into college. I think I would have made a greater effort to take serious my own health and also my own advocacy. I went thru several doctors for several medical situations (an ear issue/my PCOS issues/My inquiries about my autistic self) before figuring out that they didn’t always know the right answer or that they were not utilizing their medical knowledge to apply the best treatment. I read a lot of material on my polycystic ovarian syndrome (or PCOS) only when I brought up not only my own “hey what is this” but also source material from experts in the field, I had both my gynecologist and my endocrinologist say “oh, no, you don’t need or don’t have that, here’s some birth control and move along.” I felt like I had to become the expert-not so I could prove my doctor wrong, but so I could show them that I wasn’t “stupid” in asking the questions I did or that I had “legitimate” concerns. Personally I believe this SHOULD NOT be happening when it comes down to a person’s health. However, in continued discussions with my therapist–it is true that doctors see hundreds of patients and it is not plausible for them to remember everything about them even with the file records they keep. So when a chronic illness (my PCOS) or someone comes along who has done some reading, doctors may or may not know everything there is to know about your problems. The same is said over and over about autism-something the American community knows very little about and the knowledge they do know is either extremely stereotypical with a history that begins with placing autistic people in mental institutions blaming mothers for their behavior.
Now, I am not going to claim I know everything or more than my doctors. But I wish they would think of themselves too highly and that their patient may find the information they can review or consider in their medical expertise instead of pushing people aside.
In the autism world–a lot of adults, especially women, non-white ethnicities and those of the LGTBQ+ community are ostracized for bringing up legitimate facts, concerns about a diagnosis, and sensory stressors in life surroundings their neurological genetic difference. A good doctor will listen to a patient, work with their strengths and support their weaknesses to find a treatment that works best for them. I use the term “treatment’ loosely as I do not think is the autistic person nature is something that needs to treat. We need more help with sensory needs, speech, etc. Not let politics, social-economical status or another topic get in the way. Sadly–it is just not true for many. I know several self-identified autistics because they don’t have the time/the resources/money to get something official and having issues of talking to a doctor make it more difficult.
My advice? Don’t give up. If you have spent weeks and months researching your health problems and made notes and spent time talking to those with similar problems, then maybe you have done all you can do and it is about finding the right care and right doctor for your situation. Keep at it.
Anyone that knows me, knows I am caught between the need for routine and the need for complete openness. Some things I am extremely open about-usually dealing with people’s opinions or even favorite food items because there is so much variety in the world and I want to valid, honor and support each one that doesn’t harm myself or another. However, despite what it may look like on the surface, there are several things that are part of my “routine” that I am so stuck in. I wanted to talk about this because originally–I didn’t think I was so stuck in a routine until I noticed I was getting upset for no reason when plans changed, when something wasn’t set up the way I like it and when I thought I was stepping outside the box but actually forming my own triangle square in my own world.
One of the first things to note about routine is its definition: routine means no change. Changing the routine of an autistic person can be extremely threatneing to their neurological health. Yes-simply put their brain health. How they keep processing/act/ functioning. My son (who is officially diagnosed) has a routine about going to the zoo. We see certain animals in a certain order, take certain walking paths. If we went to the zoo and went a different way–he notices the change. The one time we did this without talking to him prior–he looked back at me worried and complained. It looks like a tantrum forming but it was a worried face not a sad face. If I had not actknowledged him, addressed his concern and reassured him, he would have continued to escalate getting upset. Some times he has a major meltdown. He does also continue to massively chew on his jacket sleeve. My husband and I see the change because we are aware of our child’s needs.But others may not see the change in going in near the monkeys versus going in near the Koalas and Australian birds is huge for our son.
I have a similar need in my routine. But it looks different. This is why all autistic people look different and its something all people should consider when getting to know an autistic person. While I am okay going to the monkey entrance or the Koala entrance–I have a specific animal I want to see: A Red Panda. And if I don’t see that animal, I get frustrated because it is my special interest. Not only it is a rare animal and endangered, but it is a calming animal to me and reflects my identity. So not seeing this animal is comparable to leaving a little piece of me behind. It provides me a safe image of my identity. And while my son gets upset by the visual change of routine. I get upset by the spatial change. In addition if we go into a section of an animal I don’t like (i’m not the greatest fan of apes) and DO NOT see my favorite –then I will be in a bad mood by accident the rest of the night. My brain spends half the evening processing why we didn’t go, why that’s okay and when can we go back to see the Red Panda.
While people who are autistic thrive on routine–it is not always for reasons you think. If you told me I must eat the same thing every day, I’d probably cry. However, there are autistic and ADHD kids who only eat one food every day for years because they want that routine. It’s safe. It’s fun. Why change? But if you told me this-I get upset because I’m being forced into a block I know I don’t fit into or that there are alternative options. Contrastingly–if you told me I can only eat for 6 hours a day, I jump at the chance to participate because it allows for flexibility in a controlled environment (this is called intermittent fasting in case you’re interested.) I am safe, I can be myself. This is something autistic adults and children are speaking out is all they want. To be themselves and to know that is okay.
Think about your routines. Maybe they are not where you think. And maybe supporting those who are autistic, ADHD or even OCD involve figuring out the whys and hows of their routines, not just the whats and filling in the blanks.
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.