CW: Abuse, grooming, sexual assault
What does it feel like when you tell a child to do something and they just don’t? When they look you dead in the eye and do the opposite? What about when they just flat out tell you “no” and stare back at you with a tiny face devoid of fear or respect for your authority? What do you feel?
Most adults I know do not appreciate this reaction. It makes our lives harder, it locks us into a battle we never wanted to fight, and makes us choose between fighting it or resigning ourselves to relinquishing control to a tiny proto-person.
Next question: Do your reactions or feelings change when the person doing this has a disability?
Think hard about the answer to that, because I know as an observer I’ve seen very different reactions. There is not a typical kid on this planet who will not push your buttons at least sometimes just because it’s funny. It’s a normal part of development, and usually people will tell you to “choose your battles,” in response. When the child doing this very normal thing has a disability though, the consequences can be very different. It gets recorded, tracked, documented. Sometimes specialists will get involved, meetings will be scheduled, and a plan will be put into place to address this “problem behavior” of “noncompliance.”
Kids do need to listen
I’m not arguing against the fact that all children need to follow instructions to at least some degree. They are learning how to be members of society, and their brains are not developed enough to effectively care for themselves. In order for them to survive and thrive, some level of compliance is required. The point I’m illustrating is that the expectations are different between typical and disabled children. The expectations also have a tendency to stay the same for disabled children as they grow into teenagers and even adults, while children without disabilities tend to acquire more freedom as they grow.
When working in adult services, too often I would get referrals to address things like “noncompliance” or “getting out of their seat” from adult day centers or personal care homes.
Readers out there: I presume most if not all of you are over 18. Do you do absolutely everything you’re told? Are you allowed to sometimes get out of your seat at work? Do you have to ask permission to go to the bathroom?
If you answered “yes” to any of these, you need to seriously consider your environment. Chances are your rights are being violated.
“Noncompliance” is not a behavior, anyway. What exactly are you measuring there, and what’s the goal? Now, I have seen some behavior analysts try to tackle this with a little bit more thought. They will make the goal something along the lines of “will comply with instructions at least 70% of the time over X number of days,” or “will engage in noncompliance fewer than X instances per week over blah number of weeks,” etc. It might sound better, but there’s a serious fallacy there. Again, what are you measuring, exactly? What instructions must the person follow? And most importantly: What are you teaching the individual about following instructions and self-advocacy?
Yes, people are allowed to tell us no, even kids.
The main issue with the types of goals discussed above are that they don’t teach the client anything functional. Targeting a behavior for which there is no better name than “noncompliance” indicates that the thought process for the intervention was superficial at best. “Allowing” the behavior to continue at least 30% of the time is a vast goal with little to no consistency. What you are more likely to get is an environment in which an individual has no way of knowing when they do or don’t have a voice, and ultimately compliance levels closer to 100% rather than the “more progressive” 70% goal.
And no, that is not a perk. That is grooming.
Consider this: What if every time someone said “no” to you, or resisted what you were trying to get them to do, you stopped whatever you were doing? This is not including issues of safety, of course. If someone is running into traffic and doesn’t want you to grab them, obviously you are going to need to. I’m talking about non-life-threatening scenarios: Telling a person “do this” or to do their homework, or brush their teeth.
bUt ThEy NeEd To Do ThEiR hOmEwOrK!
Yes, but is there a way we can still teach them that what they say matters? That they have a say in what goes on in their life or what happens to their body? What if, say, we start our homework in another 10 minutes? Or after they finish the level they’re on in their game? What if they did the first part of the homework and then took a break? Seems like a much more important lesson than just getting that homework done.
It takes a while, but it teaches that, while some tasks are necessary, that a person has a say in what happens to them and the right to communicate their needs and limitations.
You know, like we typical-passing adults do.
There are ways to teach “compliance” in a way that’s functional and teaches healthy lessons that are actually useful later in life. The catch is, none of them are quick fixes and the resulting behavioral changes will sometimes inconvenience you.
Remind me first: Who’s the client again?
That’s right, it’s not for you. If you are putting programs in place that benefit you more than the client, you are doing harm.
The unavoidable power dynamic
The thing to remember is that the biggest risk of targeting “compliance” is that there is a power dynamic between you and your client, whether you want it or not. Even those of you who work with adults, you are still an authority figure in their life. Chances are, you are present and working with them whether they feel like being around you or not. Adults also have an even longer history of being taught to “comply.” Even if they do want to refuse, even if you would allow it, there’s a history there blocking that behavior. You need to teach and support and guide them past that toxic history.
It’s up to us to read our clients’ cues and to be supportive and encouraging. Have you ever said “you don’t look that excited about this. Do you want to do something else?” Of course, you could be wrong. Not everyone is going to show facial expressions you understand, but it’s good to give the option, double-check that you have their assent for treatment. Sometimes that’s going to be a conversation. Sometimes there will be a lot of “yeses” that aren’t sincere. It’s about getting to know your client, their learning histories, respecting them enough to recognize when harm has been done, and actively working to undo it. Read: Reinforcing noncompliance until they are demonstrating that skill.
Noncompliance as a target
You coming in with good intentions is not going to be enough. Most of your clients have long histories that don’t involve your good intentions, sometimes since birth. You are going to have to earn trust and actively teach these skills, let’s call these skills “noncompliance.”
Because that’s really the only way noncompliance should be targeted: As a complex group of skills that need to be taught. There is some tolerance for non-preferred tasks involved, but we all need to be sure that the tasks we’re requiring are really necessary and not just convenient. Doing all of their homework in 1 sitting? Not necessary. Stopping what they’re doing to go to the bathroom when they really need to empty their bladder? Necessary. My putting my hands on them to get them to do it? Never necessary.
Noncompliance is not a “target behavior” or “maladaptive,” it’s a set of skills that need to be shaped and nurtured:
- Self-advocacy
- Consent
- Communication
- Identifying one’s own needs
- Executive function
- Problem-solving
- Compromise
- Etc. etc. etc.
All of us have limits and those limits are going to change from moment to moment and day to day. Why are neurotypical people the only ones allowed to have or express or understand these limits? Even further: Why are neurotypical people the only ones who get to decide what those limits are and when they are reasonable? We shouldn’t be teaching our clients to mask and burn themselves out for our convenience. It’s not about you, and I’d like to think that you wouldn’t wish that on someone you actually cared about.
Most of us have (or wish we have) histories in which we identified our own limitations and developed healthy coping skills to address them. Whether it’s breaking tasks down, managing our time, or taking time off. It’s unlikely we have someone telling us exactly how and when to do specific tasks and then physically making us if we don’t do it their way (I would hope). Why is such a process considered unhealthy and abusive when the person doesn’t have a diagnosis, but considered appropriate when they do? That’s ableism, folks.
The risks
When only looking at compliance as a way to make a learner more cooperative and easy to deal with in a setting, we are being incredibly short-sighted, selfish, and setting them up to be just one more statistic in the already horrific number of disabled people who have been victims of abuse.
The rules for children (or people we view as children) are vastly different from those set for adults (or people we view as adults), but with little to no discriminative stimuli for when the rules change. So once you’ve spent 18+ years teaching a person to do as they’re told all the time, what do you think is going to happen when those rules change? There is this absurd expectation in our society that people will automatically understand their rights when they take effect. The person who has been taught to comply is now suddenly being scolded for never standing up for themselves once they’ve passed a particular birthday.
It goes beyond that. Take toileting for example. We put the learner on a toileting schedule and they are going to the toilet when that timer goes off whether they want to or not. If they don’t walk there themselves, we put our hands on them and “prompt” them there, all while keeping a cheerful, happy demeanor. If they don’t pull their pants down, someone puts their hands on them and uses hand-over-hand prompting to make them. Then they are told to sit on the toilet and are rewarded for completing this process.
I imagine during that story you were picturing a small child. Now keep the scenario the same, but make the person involved a typically developing adult.
Suddenly, that’s pretty disturbing, isn’t it?
If the only difference in that person’s experience is the passage of time, how do you expect them to respond if some creep comes up to them, tells them to go somewhere with them, and then tells them to take off their clothes? There are tons of stories out there by autistic adults in which they were victimized because they had been taught so aggressively that they needed to follow directions or else someone would force them. That’s on us. We taught that.
But that kid that you taught to say “no?” the one who, when they refused, you acknowledged their feelings and worked through the situation with their assent? They’ve got a much better chance.
Making a person easier to deal with is not helping them, it’s helping you, and de-humanizing them. It should never be about you.