Part of having autism means that I very much prefer to have my days planned out at least a few days in advance. Also, I do best if I have rituals in my life that center around my daily activities. These rituals are basically routines. When I think back to some of my more stable times in life, I can easily see that I held pretty close to routines during those times.
I don’t do this simply because I need control in my life. It’s bigger than that. I do this because I like to and it makes my life feel more comfortable in life. The truth is that researchers and clinicians don’t know for sure why people with autism enjoy routines, rituals, and obsessions. They just know that these things help us to function better in life.
When I was in college, I had pretty strict routines when it came to many things in my life. My workout routine was incredibly strict, and I tended to plan out my quarter in terms of what I would do on a given day by the end of the first week of school. Also, my drinking was very routine and exact, and I had certain drinks or mixtures of drinks that I liked, and sometimes would get into the pattern of having the exact same combinations of drinks on a certain day for some amount of time. I did this with food as well.
When I got to AA, though, I ended up faulting myself for having such a controlled life. I thought that it must mean that my life was unmanageable, because people in AA told me that you only control something that is uncontrollable. And, because I liked to have such control over my life due to autism (which I wasn’t diagnosed with until this past fall), I assumed back then that my life must have been just terribly out of control. And, because people in the program linked this to the severity of one’s “alcoholism”, I assumed that I must have terrible alcoholism, when really I have autism.
Still, though, meetings provided me with routine, even if I tried not to have as much routine in the rest of my life. But, for this and other reasons, I experienced severe panic attacks during my first couple of years in AA. Things just were not very stable for me as I was tried to not to set up routines and lists for myself. Over time I had different PTSD symptoms. Eventually, though, when I stopped working in 2013, I went back to setting routines for myself even though I was in AA.
I began a very strict workout routine, where I exercised five days a week and did the same series of exercises every day of every week. In fact, I even got a badge on one of my fitness trackers because I exercised at exactly noon five days a week for a certain length of time. I also watched my calories extremely closely as I was trying to lose weight, and had routines around which foods I ate at dinner. I had specific times that I ate and drank throughout the day, which I had to have because one of my medications caused electrolyte imbalances, and having these routines helped me to track my electrolyte consumption. Also, when I started to play ukulele, I was very adamant about practicing half an hour a day. On top of all of this I had routines about which meetings to go to, but they actually were not as strict as my workout schedule.
This worked very well for me for some time, until Lucy had surgery to remove a bump on his neck and I came down with a really terrible stomach flu. After that, it was much harder for me to keep up my workout routine. I tried to tell myself that this was okay, but I remember feeling more and more anxious over time as I had issues with my routines due to worsening physical and mental health issues.
Eventually I broke and ended up in the burnout/breakdown that I’ve been in for almost four years. I started having repressed memories all of the time and severe PTSD symptoms. Because of this, I could not hold up as many routines for some length of time, which only worsened everything for me. And, the memories came at random times, which was and is extremely disconcerting for me. It seemed as though I was in a cycle that I could not get out of.
Over time, though, the memories slowed down. Even so, I am still having a difficult time finding new routines for myself that work because my physical and mental health symptoms are unpredictable. This creates a lot of anxiety for me.
Every day I find myself worrying about what my routine will be like for the week because of the unknowns that I face daily when it comes to my health and functioning. Today I am trying to decide what day I should get a blood draw on. I would like to go today, but I have to pick up Patrick and Lucy’s medication. Because they are liquid medications that need to be chilled, I can’t pick them up before the blood draw. But, sometimes I get very triggered during blood draws and have to go straight home afterwards. And, I need to get those medications today. What this means is that I will have to put off the blood draw to a later date, since I only have the energy to leave the house once a day.
To me, this type of conundrum about my schedule is actually a major source of stress due to autism and ADHD. It might sound simple to you, but to me the idea that I’m having to put off a blood draw past the point of where it seems wise to do so makes me extremely uncomfortable, as do many other events that seem out of place to me or don’t follow a schedule. I also am extremely uncomfortable with people who tend to make last minute plans or do not respect my need for routine. And, because I tend to react harshly if someone else disrespects me in terms of forcing a change in my routine when I say no, certain people don’t think much of me, especially when I am vocal about their trampling on my boundaries and do not hold back my emotions.
The other issue for me, too, is that because I have depression, I sometimes have issues motivating myself to follow my routines. Also, with worsening Chronic Active Epstein Barr I have to be aware that my plans can easily change due to how I’m feeling. It has been hard for me to realize that sometimes it is okay to be flexible and change plans in my life if today is just not the day to do xyz. I don’t like to give up on things that I feel are important for my health or for other people, but I’m learning that it is important for me to drop things or routines sometimes in order to take care of myself and others. I think, too, that my cats’ illnesses have also caused me to learn to be a bit more flexible and spontaneous because of the many times that I have had to take them into the vet, particularly the ER vet, at the last minute. The same is true for my health, as it has been unpredictable the last few years. And, my hunger too is unpredictable because I’m on one medication that causes increased hunger, and one that lowers hunger, meaning that it is hard for me to stick to a consistent schedule when it comes to eating and drinking, even though this is one thing that I feel is important for me to have scheduled. This has been true for me since at least high school and possibly much earlier.
Still, I am working on making new routines for myself and am trying to stick with them. I have decided that I want to walk or do light aerobic exercise for three times a week at about 20 minutes per time. I’ve gone back and forth with being able to keep up this schedule over the last few months due to active EBV, but I’ve decided that unless I have a high fever, that I want to keep up a schedule like this even when I have active viral reactivation. This is because I believe that the stress relief of exercise will help me to reach remission or at least lessen my symptoms of EBV and flares of it. Even so, unless I have a fever above 99.5 or so, I feel like I would like to exercise every day or at least five times a week like I used to. But, for the sake of my health, I am keeping my exercise times to three times a week with restorative yoga every day that is not more than 15 minutes.
As you can tell, my tendency to develop routines actually is a very effective way for me to live with and manage health conditions. It also helped me to excel in college. I’m glad that over time I was able to adopt routines despite AA influence. I do remember that it was when I started to develop strict routines that didn’t revolve around AA that people in the program started to turn away from me in terms of friendship and also started to get very critical of me for “over-managing” my life. Some people even thought that I was going to drink. I talked to my counselor at the time about this and she told me that my routines help me to take care of myself quite well. Looking back, I can see how ridiculous it was that people thought that I would drink over the fact that I was providing myself with structure in my life.
Today I’m working on not just creating structure and routine but also learning to be okay with the fact that I do so. It’s important for me to rise above all of the negativity that I heard in AA and from people in my life regarding my routines and rituals. Still, this is a difficult thing to do because I’ve been defaced so badly in the past over this. It is hard fitting into the world of neurotypicals when you have autism and/or ADHD, but I try my best every day. I hope that if you are reading this that you might have some consideration for those of us with neurodevelopmental issues and our needs.
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