“Control Issues” and Autistics: Understanding & Navigating a Basic Autistic Needs

Control — it’s a word with a dirty reputation. If I told you to pull out a sheet of paper for a word association exercise, what other words would you jot down? Maybe toxic, aggressive, jealous? The harmful use of control gets a lot of press, pretty much all the press. And it makes sense that we talk about the hurt that comes when people try to control things and people who aren’t their business to be controlling.

The problem with the one-sided press is that there are a lot of people for whom “control” is an everyday issue. Those of us who are autistic are known for being “rigid” and coping poorly with change. The more neutral flip side to this is that we do well with consistency, stability, and, yes, control. Controlling details of our personal world — especially in the midst of chaos and anxiety — is a way of increasing predictability and therefore increasing our sense of emotional safety.

It’s well-understood that something can be a sensory trigger for an autistic person when someone else is in control of the output, QQ zàfor example, playing loud music or playing with a noisy toy. But that same person may be fine if they are the one choosing to play their own loud music or play with the same toy. Is this proof that they aren’t really distressed? No, it’s a sign that the issue is sometimes fundamentally about our own control over our sensory environment and life.

When someone has an intense need for control over their own activities, environment, and schedule, this poses problems. Because unexpected things happen to the best-planned schedules. The people we’re close to have agency to make their own choices that may fall out of line with what we want to be happening at any given time. Navigating life with this strong drive can be complicated, and many of us have found ourselves failing to fulfill it and drowning ourselves and others in the attempt.

De-Shaming the Need for Control

The first step in making change is to find ways to talk about our need for control. The way we talk about things matters because it makes the difference between feeling intense shame just for experiencing something versus being able to bring that same experience non-judgmentally into the light.

We might begin by reclaiming the word control itself. I see this happening in corners of the autistic community, with the PDA (pathological demand avoidance) community having a lot of great examples. It can also mean finding other words that we already have for positive expressions of control like “agency,” that healthy and essential need for control over our own selves.

Autistic people are often acutely aware of how we differ from “acceptable” norms, and it’s no different with this trait. We may go to great lengths to hide our need for control from those around us because we know it will be viewed as unhealthy and shameful.

We need to work on our own relationship to control, exploring how it can be a neutral, healthy force in our lives. But we can never really work with this drive fully unless the people in our lives are also open to exploring their knee-jerk reactions to these ideas. Without this, there will never be safe, non-judgmental spaces to explore our needs. This can make it much more difficult to openly talk about how they can be expressed negatively in our lives.

Besides reframing an enhanced desire for control from inherently negative to a more neutral trait, what else can we do to navigate the sometimes rocky terrain that comes with it? The following are some good first steps to take as you take on this self-exploration.

A Roadmap Forward

  • Identify what you seek control of. Get out a piece of paper and make a list of things you can think of. Some will be inconsequential, some will be embarrassing. The list is only for you. Now go through them and circle the ones that are neutral or positive, things that are fully within your realm of control. You’re not stepping on anyone’s boundaries with these and you are increasing your own sense of agency and stability. Then notice those that can creep across others’ boundaries. Of course it’s fine to ask others if they are comfortable with helping us achieve a sense of safety, but sometimes they won’t be okay with what we want. These are the ones you will need to communicate about and try to find ways to work on, notably ones that excessively affect others in negative ways. 
  • Create a routine. A routine is perhaps one of the easiest ways to establish neutral, healthy control over your time and environment. Do you already have essential parts of your daily routine? If not, is there something simple you could add to your days? Is there something calming and enjoyable that you like to do that you could incorporate more regularly into your everyday life? 
  • Practice ways of coping with distress. As hard as we try to create a routine to feel safe and okay, change will occur. Things will happen in ways we didn’t expect and we’ll be left to deal with the fallout (namely, our own distress in the face of this change). DBT, or dialectical behavior therapy, is popular with a lot of autistic individuals and can be a helpful framework with practical exercises in emotional management and distress tolerance. To avoid ethical concerns like those associated with ABA, we as autistic people should be the ones determining when we will work to tolerate our distress as opposed to when the causes of distress are preventable and our needs simply aren’t being respected. You can use DBT solo with self-help workbooks, or with an experienced therapist.
  • Communicate about boundaries. Make it clear to the people close to you that you don’t want to hurt them while seeking safety through control of situations. You might try asking them for a few specific non-negotiable boundaries they would like to be respected. It can be easier for us when those around us have well-defined boundaries, and it can be helpful (if possible) for them to explicitly state when they are about to be crossed.
  • Prepare for meltdowns. It’s likely that some of your most extreme, shame-inducing grasps for control came at times when meltdowns were also occurring. Meltdowns result in a loss of our normal ability to control ourselves and we might become desperate in the need to feel safe and okay at all costs. Try to communicate with those close to you about what support you would like during meltdowns before they occur, and discuss ways that they can maintain their boundaries while also supporting you. It might be helpful to think of ways this conflict between needs could come up, or to use as an example a way that it has come up in the past, and talk about how these difficult situations could be navigated in the future. 
  • Find the controllable in the out-of-control. There are stressful events that we know we’ll have trouble coping with, from upcoming medical appointments to social gatherings to big life changes. We likely can’t control all the factors for these events even if we’d like to. Think of things you can control and pick a few or several. For an unpleasant upcoming dental appointment, you could choose to take a comfort item to hold, take a blanket to put on your lap, make sure your support person is allowed back in the exam room with you ahead of time, and ask for something specific that you want (or have someone else ask) such as having everything explained as it is done. You then have four anchors that are all yours, and you can focus on your points of control and work on releasing the rest.

Looking to the Future

I think you’ll find that even the simple act of bringing your need for agency, predictability, and control into the light is incredibly freeing. It’s been there all along and is nothing to be ashamed of. With time, you can rethink the role of control in your life and learn how it can act as a positive force to increase your overall sense of autistic well-being, while learning to decrease its chance of causing inadvertent harm. Let’s pull back the dark shroud that this need has been hiding behind and take it back for what it is — neutral and healthy, ready for us to accept, embrace, and work with.

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6 Responses

  1. Even though you yourselves have likely had more than one personal experience with the thing, quoted at end, I am going to use the expression “You wouldn’t believe” how many neurotypicals when presented with that kind of thing respond with, “That’s not possible”, “That can’t cause the difference”, even to “You are just selfish”, “You have no tolerance for other people”, and such; “It’s well-understood that something can be a sensory trigger for an autistic person when someone else is in control of the output, QQ zàfor example, playing loud music or playing with a noisy toy. But that same person may be fine if they are the one choosing to play their own loud music or play with the same toy. Is this proof that they aren’t really distressed? No, it’s a sign that the issue is sometimes fundamentally about our own control over our sensory environment and life.”

  2. And then on a different aspect, developing ME/CFS a little over 15 years ago and later having an autoimmune disease added to the mix dramatically ‘changed the paradigm’ on how much routine and how much control of what is even possible. Oh, sure, there is plenty of, “if you do/don’t do this then that will happen” while at the same time disease effects on your body can be fully disconnected from any discoverable cause and effect relationships, even health researchers recognize that.
    Routines centered on rigid adherence to clock or calendar have long gone out that proverbial window, you do what your body can when it can, which may not be the same five minutes from now and certainly won’t be the same five hours, even half a day, from now.
    Even so, I keep the alarm clock set and working at 6am as an effort to establish some semblance, Any semblance, of regularity.
    These diseases have scrambled my sleep cycle to the point where a solid case could be made that alarm clock has no meaning at all any more. But it does have meaning, as some sort of point, anchor, to that day.
    I may have not been able to sleep until 4am, may have slept and awaken at 3am, but the alarm clock starting the radio at 6am is a fixed solidity in all the out of control variability.
    And that alone helps bunches.
    Even if I do sometimes reach over, turn it off, and finally wake up more or less functional five hours later.
    Wait a minute, did I just say that routines based on clocks have no relevance to my life any more then spend the next paragraph telling how important to my life a routine based on a clock is?

  3. Control as something positive. Yet another autism-friendly perspective that stands an entire lifetime of cultural conditioning on its head. Thank you!

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