Researchers at UC Santa Cruz and the University of Virginia have been working together for the past several years to develop a better understanding of autism through a study that challenged them to fundamentally reimagine the concepts associated with social connection.
The research team conducted in-depth interviews with 13 mothers of nonspeaking autistic children to uncover both the conventional and unconventional ways that autistic children and their parents form strong bonds.
One of the hallmarks of autism is that autistic people are less likely to engage in behaviors that are traditional indicators of social interest—for example, making eye contact, responding to their name, or looking where someone points. Some people with autism also don’t communicate verbally. All of these factors can be challenges in forming social connections, but that doesn’t mean autistic people aren’t interested in relationships.
In fact, prior research featuring the testimonials of autistic individuals demonstrates that many people with autism have a strong desire for social connection. And it’s equally important for parents. Having a child who doesn’t seem socially connected is associated with higher levels of parenting stress. So researchers wanted to deeply examine behaviors and belief systems that may help to strengthen relationships in families.
The results of this study are now published in the online journal PLoS ONE. The research team included Janette Dinishak, an associate professor of philosophy at UC Santa Cruz; Nameera Akhtar, a professor of developmental psychology at UCSC; Vikram Jaswal, lead author of the study and associate professor of psychology at the University of Virginia; and anthropologist Christine Stephan, a collaborator with Jaswal’s lab.
The team’s interdisciplinary approach allowed them to tackle big questions around autism and connection through a multifaceted lens that incorporated psychological, ethical, and cultural context. In particular, they wanted to challenge the popular “deficit view” of autism that describes the condition in terms of impairments relative to neurotypical development.
“The dominant perspective on autism for decades has conceptualized autistic experience and capacity as just the absence of what ‘normal people’ have,” explained UCSC associate professor of philosophy Janette Dinishak. “That’s dehumanizing in itself, but we also have to appreciate how little we come to understand about a person if we just see them as the absence of something else.”
UCSC psychology professor Nameera Akhtar added that the key to flipping the script is to “see the person that’s there,” which mothers in the study demonstrated in a variety of ways. One of the major trends identified in the research was that mothers attributed rich personalities to their nonspeaking autistic children, providing a crucial lens through which to interpret their behavior.
Mothers also expressed that less frequent occurrences of traditional connection behaviors—like eye contact, speech, or physical contact—made it feel all the more meaningful when those behaviors did happen. And mothers became more attuned to other ways of connecting, like shared experiences, physical proximity, rituals, and providing special care to meet their children’s needs.
Mothers' belief that their children have a desire to connect with them can even lead them to interpret their children’s behaviors in ways that support relationship building. While mothers in the study ascribed personal meaning to behaviors that had a positive impact on the relationship, they often reframed challenging behaviors as attributable to factors outside of the relationship, like difficulty with impulse control and self-regulation, anxiety, pain, or overstimulation.
“One important message from our research is that our ability to feel connected to someone depends on our interpretation of their behavior, rather than the behavior itself,” said the study’s lead author, Vikram Jaswal.
Mothers in the study also discussed the importance of assuming competence on the part of their children. For example, they presumed that their children understood what was said to them. This belief helps parents perceive their children’s subsequent behavior as meaningful, which may have key developmental implications.
Prior research has examined the role of developmental cascades and social feedback loops in autism, which Akhtar describes as being like “a self-fulfilling prophecy.” If parents aren’t noticing or responding to behaviors that may be attempts at establishing connection, that could hinder children in developing social competencies. On the other hand, If parents respond positively, it may encourage future connection efforts.
Ultimately, mothers in the study expressed how crucial it was to arrive at an acceptance of autism that allowed them to focus more on building a strong relationship with their child, rather than trying to change them. The stigmas associated with an autism diagnosis can sometimes obscure this perspective, but the research team hopes the insights from mothers captured within their study may help other families navigate their own paths to building stronger bonds with their children.
