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.
- Professional Cuddling: A Safety Guide for Autistics - October 26, 2021
- “Control Issues” and Autistics: Understanding & Navigating a Basic Autistic Needs - October 1, 2021
this helps so much; thank you
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.”
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?
Control as something positive. Yet another autism-friendly perspective that stands an entire lifetime of cultural conditioning on its head. Thank you!
This is truly very helpful and the positive spin is appreciated! Where we struggle is our sons’ (we have two on the spectrum) attempts to control the behavior, feelings, and preferences of other people. For example, they get upset and melt down over their parents’ liking certain songs or movies (even if they are not being asked to listen to or watch said media). The one son tries to control the other’s preferences for video games, toys, and more. The other son does not like when other children… well, do ANYTHING. The mere fact that someone like things that they don’t is triggering for them and they act out on those feelings, usually cruelly. We have always stuck to routines, helped prepare them for the unexpected, and talked to them about choosing what they can control in a situation but they always answer that they just want to control ALL aspects of a certain situation because having things go their 100% way is the only way they can feel safe and happy. Therapy has not been terribly helpful in helping them cope with this stuff but hearing from fellow autistics, like with this article, sometimes does help a little.
It is good to understand the perspective of the autistic person but no-one is really interested in the life and happiness of the care-giver and other family members affected by this. If you are struggling with it, the suggestion from most professionals is get yourself in a better place so you can cope. The difficulty comes when the person with a need to control, controls all the ways you supported your own wellbeing, attacks you emotionally if you try to challenge, resists every change even if it could improve the situation, and you live your life on eggshells in fear of the next meltdown. I respect that we all need a greater understanding of this disability but others involved have a right to some happiness too. Do emotional abuse laws not apply to autistic people? The latest feelings within the community is that autistic people should not have to mask to fit it with others and that they should be free to be their autistic self but we all have rights and one person’s needs should not destroy the happiness of others. An important part of support and therapy ( if available) should be about respecting the boundaries of others.
Alison, I fully identify with the need for control over my own circumstances, and why when this was unreasonably denied me in the past I became a mix of depressed, nihilistic and enraged. However I think you make an excellent point, echoing that of the author: an autistic person’s need to be in control should not result in abuse of others, even if it’s unintentional. I have experienced this from both sides of the fence. A (good) few years ago I worked as part of a residential support team for a man who was profoundly autistic and had another condition that wasn’t disclosed to us, I think possibly Fragile X given his appearance. He would turn the TV up louder and louder, replaying the same clips over and over; try to tell me not to flick my indicator off when driving (I am compelled to click it off after a manoeuvre before it autocancels!); try to usher me to go to the sleepover room when he went to his bed because he was afraid I’d leave a door open (I really needed time to decompress at that point, and rarely got more than 2 or 3 hours sleep at his home anyway because I was so wired). And on and on. I had to put my foot down and say no, I control you and you control me. His mother actually told me “Do not put up with this from him, it is abuse of you!”. The irony was we otherwise got on like a house on fire, probably because I understood why he felt compelled to do things the way he did. In fact we did many things in a similar way, like double-checking the doors were locked and facing up tinned food whilst unpacking after a supermarket trip! Routine was everything, and I easily stuck to that rigidly. Knowing what was going to happen was also important to him, so we discussed in detail any outings that weren’t part of his normal routine. The boundaries I laid down for him, the man I am now with lays down for me. When he’s doing a task, I don’t get to supervise him; I do most of the domestic chores because he work longer hours and travels further to work than me, the standing joke is it’s because he won’t do it right, and he won’t, lol! If I’m being pedantic or want to do something the hard way because it is logical to me, he knows to expect a mouthful of cussing when he tells me I’m nuts. We both actually find a cussing match quite enjoyable 🙂 He also knows now to leave me to it if I’m melting down and not to take it personally. The one thing I do control is organizing holidays and short breaks, which I plan with military precision with his input on places he’d like to visit, and he’s more than ok about that because our trips always go smoothly. It’s all about communication, understanding, co-operation, compromise and respect. We need a *lot* more of that, and more tolerance, among all neurotypes.
Apologies, “I don’t control you and you don’t control me” – an edit button would be a kindness!
For that, “Control … If I told you to pull out a sheet of paper for a word association exercise, what other words would you jot down?” Surface. Column. Stick. Input. Panel. Wheel. Axis. Yeah, I’m in to airplanes again. 🙂