Struggling with Routines as an Autistic Person with ADHD

I was talking to someone the other day who was really having trouble with a serious, and fairly recent, decline in their executive functioning. This is not an uncommon story that I always hear (and relate to) from my neurodivergent AND neurotypical friends or clients. I have heard them explain that before the pandemic, they had some pretty intense structure in their life. Looking back, they realized that having a schedule of work and/or school in person at specific times was an external demand that kept them in the habit of waking up, getting ready, going to work, coming back, cooking, eating, doing their evening stuff, nightly tasks, and then usually household chores and social/recreational times on weekends. While it was extremely stressful for them, they were amazed at how much they achieved despite juggling so many outside obligations. 

This person I was talking to described how they were able to read 15 books a week before, and now they can barely read one. They described the guilt of having laundry undone and a growing list of tasks that they are avoiding, and wondered how they got to this point. They didn’t understand why this is happening, ever since the pandemic. They attributed it to no longer having those external demands that essentially built their routines for them. This is a dilemma that is all too familiar to me, personally. There can be many reasons for experiencing increased executive dysfunction, and I have a lot to say about how debilitating this feels, but this blog aims to focus on structure and routine, especially as it relates to my personal experience with AuDHD. 

I feel like it’s pretty publicly understood at this point that one of the facets of autism can be, as the DSM-5-TR says, “inflexible adherence to routines.” I have heard many neurotypical people outside of this space talk about autism and routines－ needing to do things a specific way, needing to take familiar routes to work, struggling with any changes in their routine or expectations. All of that is certainly true for a lot of autistics. (Note, routine is just one portion of the autism DSM-5-TR criteria B, number 3).  But what about when you also have ADHD? Routine is literally both my best friend and my enemy, if that makes sense. For me, I know that routine is really organizing and healthy for my brain, but at the same time, it’s so unbelievably difficult as well. The ADHD part of my brain feels trapped and bored and needs some level of spontaneity in my daily life or it becomes super monotonous and mechanical. It’s so fixed. It starts feeling like a chore rather than a choice. Then my routine unfortunately becomes a perfect storm for procrastination and avoidance. And then guilt when I don’t stick to it like I promised myself. 

I have learned to accept this organized chaos so I don’t get trapped in that avoidance/guilt cycle. I do have my non-negotiable activities like drinking coffee in the morning or specific skincare steps at night (I know neurotypicals have these too), and yes it is deeply upsetting if they aren’t completed, but everything in between is up for negotiation within reason. Just like everyone else, I have plenty of daily obligations. But I do NOT have to do them at a specific time or specific order. As I write this, I am writing a blog at midnight and will then take the dog out. Then I will get ready for bed. It doesn’t bother me. The time and order doesn’t bother me. (It does bother me when I stay up too late and am not rested for the next day because I was spending hours deep on Reddit or TikTok or something, learning about semi-pointless information such as… Did you know that horses have calluses on their inner legs called chestnuts that were evolutionarily once a toe? I learned that by watching hours of videos about them). There is my hyperfocus and intense special interests in action. The next day, it might very well be a completely different intense interest that takes me down a new rabbit hole.

I digress. I can’t deny that having a more regular bedtime and wakeup time would benefit me, as when I am too tired, that’s when my autistic brain takes a much more prominent seat. My sensory sensitivities increase significantly, my ability to communicate and socialize decreases significantly and that’s incredibly stressful. But back to the point of the blog－ routine is really really hard for me as an ADHDer, and as an autistic, I sometimes suffer for not having one. 

Right now as I write this blog, I really need to get these thoughts out or I will lose them. Because of my ADHD, I may not be able to revisit this later on and arrive back on the same train of thought. My memory is not great. Because I’m autistic, task-switching or topic-switching to something not interesting to me is already hard. I sometimes just have to ride the wave of whatever I am currently engaged in. And sometimes that means time blindness, and not realizing it’s been X amount of hours since I’ve eaten or drank anything. That is something I would like to change.

One day, an amazing colleague of mine said: “routine doesn’t have to mean schedule.” This really resonated with me and I thought about it for a while. I still think about it. I have places that I feel comfortable with, and I visit routinely. I gravitate towards things that are familiar. If my best friend were to call me and ask to go on a walk spontaneously with no prior notice whatsoever, I might very well go. But guess what is certain? It would only be with him, no unannounced third parties, and we would be going to one of our three routine places that we walk. In this case, the decision was completely spontaneous but the conditions are completely predictable. I think for me, that’s the main thing that I’m figuring out. Time, order, and schedule does not matter to me but the conditions do. If it were with people I’m not familiar with or a place I’m not familiar with, I’d definitely require preparation and planning. If an element of a routine plan was to change unexpectedly, I would get extremely stressed and dysregulated. I’ll give another example:

I had a mental agenda for today.  I was going to work on and complete 3 major projects and then I had some client sessions after that. I mentally prepared and psyched myself up for those series of events. Guess who decided to show up while I was in the middle of completing a task that I was focused on, and almost directly before a session? My mom. She showed up with her laptop asking for my help with an email situation. I love my mother and I help her all the time. But that wasn’t on my agenda. Now I had to put the thing I was working on down and attend to her needs. Then I realized 10 minutes before my session that I hadn’t eaten yet or used the bathroom before my scheduled appointments. I had a mini-meltdown and I had to let her know I love you but I can’t do this right now, while quickly heating up and shoveling down a plate of spaghetti. My peace was totally and utterly disturbed in the important moments before the session, and I entered those sessions feeling super tense. I wondered later on why I felt irritable and moody. It was then that I realized my “routine,” or whatever you want to call it, was interrupted. My flow was interrupted. The time－ however unstructured it may be－ that I spend before a session to get myself prepared to be able to hold space for people, was invaded. “Invaded” may sound harsh, but truly, it really was that dysregulating. It threw me all the way off. 

And then I realized that, in this context, I actually am pretty inflexible. Which is why I have to reiterate, once again, that the time and order of things do not matter to me but the conditions and predictability still do. I can be a very spontaneous person with the right conditions, and my day-to-day life might vary considerably. But I’m thinking there are ways that I subconsciously protect my peace and ensure my comfort without even having the awareness that I was doing it. And that’s why the journey of self-discovery is a constant one, and I am so happy to help other neurodivergent people like me gain clarity on their way of being, too. It’s not easy, but it can certainly be very enlightening. I love this process.