For People With Intellectual Disabilities, Resistance Can Equal Autonomy

New research is emphasizing the importance of understanding non-verbal forms of resistance as a crucial part of disabled people’s autonomy.

In a small study, researchers from St Mary’s University and Anglia Ruskin University (ARU) found that people with severe intellectual disabilities resist activities as a form of communication expressing that they do not want to participate in them.

For this study, five adults with severe intellectual disabilities in care homes were videotaped participating in everyday activities like art, therapy, and meals. Four of the participants were male, and three participants were non-verbal. The study was published in the Sociology of Health and Illness journal in late February.

The study finds that caregivers should try to understand non-verbal forms of resistance, instead of immediately suppressing or correcting the behavior. This includes maladaptive behavior, which can be characterized by agitation, aggression, and self-injury.

“It has been recognized for a long time that this sort of behavior should be taken as a communication, and you should apply your detective skills to really [figure it out] rather than suppress it,” the study’s co-author and ARU reader in social psychology and quantitative methods Mick Finlay, PhD, MSc, tells Verywell.

Resistance as a Form of Autonomy

For the study, researchers reviewed 40 hours of videotaped interactions between the five adults with severe intellectual disabilities and their carers over the course of a year. Interviews with caregivers were also conducted for this study. The researchers noted three main types of forms of resistance:

• Lack of engagement with an activity
• Active resistance to an activity
• Resistance within an activity (active resistance or passive disengagement during an activity)

Because the adult subjects of this study were non-verbal or struggle with verbal communication, it was not completely clear in some instances whether they were showing passive disengagement or other active forms of resistance during an activity.

One example of this was when a carer was putting their hand over the adult subject’s hand to help them with the motions to paint, but the adult subject dropped the brush once the caregiver removed their hand. “Did the person not want to paint?” Finlay says. “Or maybe they weren’t interested in making the movements themselves, but they quite enjoyed having the other person’s hand around them and moving their hand for them.”

Finlay also noted that some carers felt that it was part of their responsibility to make sure that the adult with a severe intellectual disability went to and participated in activities.

“People with disabilities might not want to do that activity at that time of day, or they may want to do it for a little while and then stop doing it before the scheduled end of the activities,” he says. “Their wishes and desires come into conflict with the timetable of the institution.”

Perceptions of Severe Intellectual Disabilities

It is universally recognized that disabled people should have their own personal autonomy. In 2006, the United Nations Convention on the Rights of Persons with Disabilities stated that disabled people should have “individual autonomy including the freedom to make one’s own choices, and independence of persons.”

However, in Finlay’s study, adults with severe intellectual disabilities were not always free to make their own decisions. He believes that the infantilizing of adult disabled people may play a role. “It’s quite dangerous when that … gets sort of transplanted into adult care services because in many cases, these people are sort of fully developed, in their 30s or 40s,” he says.

Mayra Mendez, PhD, LMFT, a licensed psychotherapist and program coordinator at Providence Saint John’s Child and Family Development Center in Santa Monica, California, tells Verywell that some non-disabled adults have the tendency to do stuff for disabled adults, “and not really account for [the fact] that they do have thoughts, and feelings, especially about situations.”

Non-Verbal Methods That Help

In her position at Providence Saint John’s Child and Family Development Center, Mendez works as a mental health provider for people who have some form of intellectual disability. Mendez says that a lot of her patients have “some capacity for verbal” communication, but she also uses non-verbal tools to help people who may struggle with communication.

For example, if Mendez and her patients are participating in an eating activity, Mendez will have three different food options for them to choose from. She’ll use both verbal and non-verbal cues from her patients to help figure out which of the three foods they prefer.

“Even just monitoring the eye contact with the food, we will look at the eyes, where they’re referencing, we will ask for pointing,” she says. “If they can, we will ask for the name, but enough that there’s a choice. That we’re not making decisions for them.”

In adult care facilities, especially if there is a 1-1 ratio between people with severe intellectual disabilities and staff, Finlay says it’s important for caregivers to let the adults they are assisting take the lead.

“If they really don’t want to go into a room to do a musical activity, you should go with them, find out what they do want to do,” Finlay said. “We need to think a lot more deeply about how we could enable self-determination in those tiny moments, in somebody’s normal daily routine.”