Lack of structure

The myth is that autistic people are always organized and plan everything they do. I call this a myth, because for me this is not the case. I am very chaotic, I do not have an internal structure. I notice this very strongly in daily life. Plans, schedules and the “internal clock” work much less for me.

It’s not that they never work, but I lack the neurotypical way of planning and organizing. This is related to the executive functions that work differently for me than for neurotypical people. Planning has the condition that you know how long a task is going to take. And estimating that is very difficult for me. I don’t know where to start and there are so many factors to take into account.

Surely structure is very important?

Yes, structure helps me get through the day. The lack of it with me is clinging to that structure. Where with others it comes down to an internal clock that indicates when things have to be done such as eating, cleaning, getting ready for work/school and so on, I don’t realize that it’s that far.

However, this structure must be put in place for a balanced life. And since I don’t have the signals myself, they have to come from outside. Now that I know that this is how it works for me, I have also become much more adept at incorporating external signals. For example, I often use a digital agenda from Google. In it I not only write down appointments, but also (recurring) appointments about other things. For example, going to the hairdresser’s, when the guide comes along, when it’s time for dinner or when I need to take a shower. My phone reminds me of these tasks and it helps me to maintain the structure.

Digital tools I use

As said before, I use Google Calendar for many things. I also use Waze, a navigation program that is linked to my Google calendar and Facebook. When I enter a location at the appointment, keep an eye on Waze for me when it’s time to leave for the appointment. Ideal!

Through my Google calendar I also make appointments with my ex about the children. Things like the ten-minute conversation at school or appointments with the hospital. Things where both of us are always present. In the beginning it took my ex to get used to the way things went, but nowadays it is often the case that I get the appointment from her earlier than I have read the mail from school for example. Also because she has planned the appointments for the interviews.

It works perfectly. It helps me so much to maintain my structure. It helps me to function better.

Structure remains a sensitive point

When I’m not feeling well or when the stress increases, my structure is the first thing that goes on. I get out of my rhythm and can hardly come to my normal things. The lack of structure means that everything goes out of context. It is then very difficult for me to get back on my feet. Luckily that’s much better nowadays. It certainly helps that my network is aware of this. They know that I will certainly keep to the agreements I have made, although sometimes I need a reminder. If I’m doing well, keeping the structure is always a point of attention. But then it’s not an immediate problem.

Benefits? Are there any?

In my opinion it is. One of the other things mentioned in connection with autism is being inflexible. And I am sure of that in some respects (opinions, sequences of actions) but in terms of planning I have that much less. I don’t mind adjusting my structure. Especially because I don’t have it myself

This allows me to switch quite quickly if necessary. If a schedule is changed, I can adapt to that quite quickly. I’m also pretty easy to do things outside of my rhythm. Although I have to be careful not to lose my structure. Since I don’t have an internal structure of my own, maintaining the structure that I do have is very important to me.

But there are not many other advantages to it. I get home counselling nowadays. And not really because I am “too stupid” or because I couldn’t do things, but rather to ensure that I actually do the necessary things. The guidance provides the necessary structure in my life. Going to the day care is also such a necessity for me. If that guidance disappears for me, I lose my structure. And when I lose my structure it goes downhill with me.

So yes, structure is very important for me as an autistic person. But I don’t have it for myself (unfortunately).