Autism
Restraint of People with Autism and Developmental Disability
Some institutions can restrain people against their will. Should it be allowed?
Posted December 12, 2018
Restraint is emerging as a hot-button topic among autistic self-advocates and some parents.
People on both sides feel their position is obviously correct: Restraint leads to abuse, and should be banned; or restraint is necessary for the safety of some people, and those who deny it are crazy or idealistic.
Whenever people are restrained against their will there is always a risk of abuse and cruelty. The sad truth is, many staff working with developmentally disabled people are poorly trained and poorly paid – a bad combination that can lead to horrific outcomes. The condemnation those incidents receive is certainly deserved. Unfortunately, it’s just the tip of the iceberg and most abuse involving restraint is never reported.
Many if not most autistic individuals who are restrained cannot talk freely about their experience. Either their disability precludes free public communication, or they are under guardianship and not free to speak publicly when caregivers control social or internet communication opportunities. There is a risk those people will be mistreated and have no voice with which to seek justice. Such a thing is awful to contemplate, yet all too real.
Critics feel that caregivers should de-escalate situations before they explode. For them, restraint is truly a last resort to be employed rarely if at all. Other schools employ restraint more often and for them, it can be a slippery slope into abuse.
Schools may say “we never use restraint as a punishment; we only restrain to prevent injury,” yet the availability of restraint means staff may employ it in ways that management would not condone. The unrulier the students, and the more overloaded the staff, the greater the risk.
In his famous Stanford prison experiments, psychologist Philip Zimbardo showed that seemingly gentle college-student jailers turned brutal, despite their assurances to the contrary and indeed their best intentions going in. Some will say a school isn’t a jail, but a school that employs any level of restraint is taking on aspects of jail, and definitely faces that risk.
Autistic advocates say those are powerful arguments for eliminating restraint in school autism programs. They say restraint does not always lead to abuse, but it does so often enough that restraint should be eliminated.
Advocates point out that potentially dangerous behaviors that trigger restraint can be managed in better ways. For example, a person who bangs his head repeatedly might wear a helmet. Another person may be overloaded by sensory stimuli, or even tormented by bullies. All autistic adults – myself included – have personal memories of all these things growing up.
Many of us look back on our childhoods and consider our teachers did their best, but they failed to understand us. They didn’t know lights, sounds, and smells drive us crazy. They didn’t see the taunts in the schoolyard. They didn’t understand when their methods of teaching were incompatible with our styles of learning. Our knowledge has improved somewhat, but misunderstanding is still rife.
Restraint carries risks of its own. When I was younger, I regarded attempts at restraint as potential fights to the death. There are animals that act that way, too. We learn which cats we can pick up calmly, and which will cause the house to explode. Some people react the same way to grabbing and holding and they may suffer harm or death even as caregivers were trying to prevent those very outcomes.
Those are horrible situations for everyone involved, particularly when aggression between people is involved and the caregivers feel they had no option but to pull the people apart and restrain them. No one wants bad outcomes but sometimes they are unavoidable.
In those cases, one thing we can do is eliminate what's called "prone restraint," which is essentially piling on or sitting on someone to hold them down. These are the restrain situations where people cannot breathe and are most likely to die. Even is restraint is used, prone restraint should be avoidable, particularly with training that should be mandatory.
Sometimes we don’t know why we melt down. If we can’t always tell, it’s probably not realistic to expect perfection from teachers and caregivers in helping us. When all else fails, and the fur and the chairs fly, what is the staff to do? If they are not allowed to use restraint, their only other option is to clear the area and let the tantrum burn itself out, or call the police. Few parents would choose those options for their kids. Some autistic people say they’d rather be left alone at those times; I’ve never heard of any of us wanting “help” from the police.
There are also situations where one person attacks another. Sometimes separating the combatants is not enough; one or both must be restrained until tempers cool. Such situations may happen with adults or children, cognitively disabled or not. People joke about gladiator combat but none want to put their child in the ring, especially when they are disabled.
Parents, staff, and teachers have all described restraining kids to prevent them harming themselves or others. Parents tell me they expect schools to protect their kids, and that includes preventing them from harming themselves and others. Some opponents of restraint suggest we should be allowed to harm ourselves if that’s our choice. If society is moving toward legalizing suicide, allowing people freedom to harm themselves is a step in that direction. No matter how adults feel about that for themselves there is little chance minors will be allowed to self-destruct in present day American society. Mainstream Americans do not support harming others either, and that is sometimes a factor in using restraint.
In the end, restraint is one thing that may happen when all else fails. We can and should strive to avoid getting into such an extreme position but if we are realists, we must recognize it will inevitably happen. When it does, we really have just three choices:
- Use staff to restrain the person and unwind the situation.
- Isolate the person so no one else is harmed, and let them work it out.
- Call the police and rely on them.
The odds of harm increase exponentially as we move beyond choice #1. The fact is, behavioral explosions can happen in any school, or any care setting. Developmentally disabled people are much more vulnerable to harm in these situations, and they are more at risk because there is often a diminished ability to self-regulate (leading to situations that may involve restraint) and later they are less able to describe and report mistreatment.
Every disability advocate I know is opposed to the use of restraint for punishment. Most schools disavow restraint for punishment, but that practice remains common in jails and some psychiatric settings.
It is difficult to take a black and white position on restraint for protection of an individual or others around them. As good as the arguments for restraint are, in the gravest extreme, the alternatives are worse. Some people present this as an argument that applies only to autistic people, or people with developmental disabilities. While they may be a group that is restrained often, any person has the potential to exhibit dangerous behaviors with little or no warning.
Some believe behaviors that lead to restraint are made worse by modern society, where individuals are often placed in the care of people they don’t know. The reliance on low-wage workers for care of disabled people is in many ways a formula for disaster. Today’s society has become less tolerant of eccentric of aberrant behaviors. Those are all problems, but they don’t take away the practical need for restraint in some situations.
There are also significant legal implications to the use or "not use" of restraint. A person who is restrained may sue caregivers for using excessive force and causing injury, but a person who was not restrained might be sued for causing injury to others. Parents may be at risk for the actions of their children, and parents may take action against caregivers for actions against their children. A school may be sued for restraining but they are also at risk if the don't restrain, when parents charge them with failing in their duty of care if another student explodes.
I’m all for talking people off the cliff. I support training every school teacher or caregiver in de-escalation. But I also recognize that despite all best efforts things will occasionally go disastrously wrong, and people will kill themselves or others if not restrained. As someone who has personally faced such situations, I’m not eager to eliminate physical protection options even as others say they would rather assume the risk rather than restrain.
What to do about restraint for developmentally disabled is a discussion with no easy or good answers.
(c) 2018 John Elder Robison
The opinions expressed here are the author's own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.