Au-Some Afterthoughts 2020
If not you, then who?That Au-Some Incubator: Education, Advocacy, Collaboration
Hello everyone!— so i wantes to let you know about an awesome group one of my FB friends is starting up. If you want to make a difference in the world for other autistics, THIS is one of several places to start!
Come join us!
A few months back, I joined my first Discord group. It was a nice pleasure because I am meeting autistics from all over the world. Another advantage of joining this specific group under a chanel for “Yo Samdy Sam” has a couple book groups-one group for comment on amazing books and one book club. It was in this book club that we as a group decided as our first book we were going to read Odd Girl Out by Laura James.
The book is the story of a late diagnosis autistic women, her attempt to catalog her life experiences and how they fit into this new world that has opened up to her. I was glad we had decided to read this book as it was shorter than the other book we were considering and it also had audible options along with digital and paperback versions–something someone with ADHD/autistic struggles in executive functioning truly appreciate.
*********WARNING: SPOILER ALERTS************
This feels like a “duh” in my mind when you’re reading a book review, but not always. So what comes hereafter may be a spoiler alert. There are also some mild trigger warnings from the events in Mrs James’ life including divorce, discussions of addiction and a lot of emotional topics personally set me off some nights.
So let’s dive into the book. It is divided into 16 chapters, mostly in chronological order from August 2015 when the author first reads her evaluation about her autism diagnosis while on a getaway vacation she is taking before her children go to university. The book follows the events that transpire in her life interjecting a couple sections throughout random chapters where “flashbacks’ appear mid-thought. She is a writer for the Telegraph and even writes about her “coming out” as autistic in one of her articles. At first, this thru me off. But listening to the book on tape a little helped me out a lot listening to it while taking a long walk or when driving in the car. But then I realized I wanted to highlight almost every line on every page. So I did have to spend a lot of time sitting with the audio. But it was worth every minute. And yes, my poo paperback is covered his markings. Several markings.
Besides the book being completely relatable to my autistic life experience — the author is excellent at writing out her thought process. This is extremely helpful because I feel as an autistic person– sometimes people don’t hear how we are thinking. And (surprise!) we do NOT think like everyone else. I know personally I have a great problem with people putting words and thoughts in my head and this is typical of most autistics. So to hear words from another autistic in the words (like word for word phrases) was hugely supportive. Page 99–i highlighted half the page. Same true with pg 164-65. Here’s one form page 154 “If my interests were people-focused, they would be too painful to deal with. People are unpredictable. They say one thing and mean another. Autistic honest has a purity. Ask us a question and we will tell you the truth. One hundred per cent. Undiluted by squeamishness. Unadulterated.” I tell people this all the time–that my questions are true inquiries and I am several times too honest for life.
Another discussion I enjoyed was at the end of Chapter 6–about finding information and being happy with this as an autistic. Laura James talks about Sarah Wild (a director of a school made for autistic brains) and how she believes that Autistic happiness is different and that neurotypical people need to stop judging autistics by their neurotypical standards. “Meeting experts is pure heaven for someone autistic. The access I am given to someone’s knowledge never fails to make me happy. Even more so if they happen to know something about one of my current intense interests.” (pg 111-12)
So I would arguably say if you have an autistic family, friend or you yourself are autistic–please PLEASE read this book. It’s worth it. To hear a voice is huge.
DISCLAIMER: I am not a doctor. And this is my own experience from taking meds for my ADHD and meant to be used as a diagnosis, treatment or method for your own help. Seek out the professionals.
So after a good month of adjusting to taking ADHD meds, I had a meeting with my psych at Kaiser. This is the 3rd time I’ve talked with her. While I was mostly okay from taking the meds and my symptoms appeared to be improving, I had concerns about this weird feeling of not knowing when to go to sleep. Normally I wait until I’m yawning, can’t keep my eyes open or exhausted. That happened the first day quickly, but after a couple weeks, I couldn’t tell anymore. Dr H (hidden for privacy) decided we should try the immediate release drug since it seemed I was having a longer reaction to the extended release. So as a general practice, I waited to start the new drug on the weekend and April 18th I changed over to the new dose.
Picking up the drug was an experience. Due to the drug’s nature I had to physically pick it up. And like most of the world–we are in quarantine so I went over, wore a mask, stood in a couple lines to be asked questions and have temperature taken (I had no fever and was fine.) There was no one in the pharmacy area (a super surprise but expected) and I was able to get my meds quickly and efficiently. Which was great because then I could start them right away.
However, as I am finishing this blog on May 1st, I had even MORE changes happened. First–after a few days of getting on a better routine and schedule, I actually started liking having more control of my focus on the extended release. However, I stuck to taking the new meds because I didn’t know emotionally/mental if that was the issue. Suddenly–on the regular release–I lost control again. The drug hardly felt it was working, it was gone as soon as I took it and I was back into the crazy emotions and lack of focus. I thought it was going to be another transition period and wanted to take my time but it was just getting more and more difficult to do what I could. I sent her a message and I changed back to my extended release.
I’m doing well now that I’m back on the extended release. But I am concerned I will not be able to figure out when I’m having a bad reaction. I am also frustrated because Kaiser’s method is to have nurses answer the messages I send to the doctor which for medical items is not so much an issues, but with mental health has already run into problems They told me to order my prescription online–even though I knew because of its nature I could NOT do that.
SO we shall see how these meds work out.
not sure what day this is. Isn’t that the story nowadays?
But I thought I’d circle back around to my new experience with taking ADHD meds. It has been a learning curve (among a crazy global adjustment time period) but here is what I know so far:
Upside 1. I can focus a LOT longer. Basically when I would get periodically “tired” (which may have been boredom in the ADHD sense, not the typical “I have nothing to do sense.” ), I would I lose concentration. Trust me having to review the file 3-5 times because you get a call or update another “quick” email is frustrating. Transitions in working from home didn’t make it easier.
Downside: My insomnia is more present. Guess what?-that’s a side effect. It’s not that I can’t sleep–its my internal clock doesn’t let me know I’m tired. So when late night comes, I’m still pushing thru. Especially if I start a project late.
Upside 2: I was able to grasp a little of what I was feeling the first week. Meaning I could sense I was feeling an emotion long enough for my brain to catch what that was and figure out if I respond appropriately.
Downside: As of yesterday/today– I have lost more control. I’m not sure if that’s the meds (or lack of consistency) or if its the current world status. I don’t like that its confusing thought. So I managed to find a emotions wheel (just google an image) that is fairly comprehensive and when I think about it I grab the wheel to check in on WHAT I’m feeling.
Upside 3: Well–here’s the thing. I don’t know what I am really looking out for. I’ve never taken medication like this before (one that affects my brain) and I thought I only needed a little help/no medication up until my son was born. Come to find out ADHDers that have better control or their environments that support their neurodivergent selves typically do not need help until adulthood and usually after a major transition.
Downsides: well, not a downside per se, but I am gradually getting the full mental grasp of while medication does help, it does not take away all my symptoms. I still may forget things instantly. I may still have a hyper-focus type moment. I may get bored even! This medicine is supposed to help me, not erase all these problems. And while I know that mentally speaking, other areas in my head may not have caught on.
Also, this blog was written prior to the discussion of my first follow up with the psych. stay tuned for THAT update in the following blogs.
If you feel comfortable, feel free to talk about medication you may take for neurological/mental health. No judgment here at all. Here to end the stigma!And please be courteous and respectful in your comments/replys.
Today is the holiday the US still has not really grasped onto. And while the intention is good, sometimes I wonder if we ignore Earth Day most years because 1) we’re still recovering from Easter, 2) Don’t have the time and 3) think we can either do it later or someone else will do it so I don’t have to.
This year, I hope its going to be different. Here we are, in the middle of a pandemic. We’re all told to stay home and cover our faces. The cars on the road have gone down, the people out and about are dwindling in number and it is super quiet now when I walk my dog late at night. Yet-at the same time mother nature has been given roam to breathe a little. You can see the snow on the mountains from the breach in Southern California. There is no layer of brown cloudiness coming east from downtown LA to our house 40 miles east. Animals are coming out into the streets. And while a little of me thinks its the “springtime” renewal, the other part of me thinks its humanity pressing less on creation.
Also, as a kid, I wanted to all I could to allow nature to grow. I would get internally mentally upset about doing the “wrong” things and not taking care of the Earth. And while i’m not sure if this is related to my autistic self or just my nature, but whenever I felt i was going something wrong, I always wanted to work to fix it. To make it right. In addition to all the thoughts above–I also wanted to share something I thought never would be possible for our family. Due to our old gas guzzler of a car (our Honda Pilot that we have owed for 7 years) needing more work than it was worth–we decided to purchase a replacement vehicle. We wanted to purchase a vehicle that was more gas efficient. Something better for the environment and for our budget. And while the smaller cars were mostly in the market–we ended up purchasing an ELECTRIC KIA SOUL! We didn’t even know that one existed until we were going out shopping for a Ford Fusion hybrid and discovered this car instead.
Now, let me tell you. I did not think I would ever own a black car. But this one I thought was pretty. I got into the vehicle and it was SO QUIET because we had no engine-just a battery powering everything. Oh-by the way -did I mention its ELECTRIC!? yeah, we learned real quick about electric cars and charging ports and APPLE CAR PLAY! (okay okay, i know its an earth day post, but I haven’t talked about it much since and its kinda like helping the earth? right?
So however you celebrate earth day–by planting a tree in your backyard or growing your garden or by replacing a large suv with a more gas efficient car. Respect Mother Earth! And we’ll all make it thru this pandemic together!