INSAR Day 3: Keynote speaker Liz Pellicano redefines “autistic flourishing”May 15, 2022
The goal of autism research is to make discoveries that improve the lives of autistic people and their families. But according to Liz Pellicano, Ph.D., professor of autism research at University College London, there is often a gap between the research lab and autistic people’s daily lives.
In her Friday morning keynote address, Dr. Pellicano challenged current research models and suggested a new approach to thinking about “autistic flourishing,” or what it means to live a happy and fulfilling life as an autistic person. She suggested five ways that autism research can evolve in order to make a meaningful impact on the lives of autistic people and their families.
1. Prioritize overall well-being over health.
Currently, researchers often compare autistic people’s functioning to a “typical” standard of health, where any differences from the “norm” are seen as shortcomings or impairments. This narrow focus leads to a limited understanding of autistic people’s experiences and makes researchers more likely to view any differences as deficits rather than strengths.
This approach leads to the development of interventions that aim to lessen the differences between autistic and non-autistic people, often forcing people with autism to conform to non-autistic standards. Shifting away from this health-based model towards one that prioritizes overall well-being can lead to discoveries that improve autistic people’s quality of life while honoring their differences.
2. Allow autistic people to define what well-being means for them.
In our culture, a person’s well-being or quality of life is often defined by their ability to accomplish certain life achievements. For example, holding a job, living independently and having friends and intimate relationships are seen as key elements of a happy life. However, people with autism sometimes struggle to achieve these milestones, particularly if they have high support needs. Many assume these people have a poor quality of life, but that may not be true.
“It’s not often examined whether these achievements are considered meaningful from the perspective of autistic people,” said Dr. Pellicano. “But studies show that an autistic person who might be highly dependent on others for their care might nevertheless be happy and see themselves as enjoying a good quality of life. If we want to take well-being seriously, we need to take autistic autonomy seriously too. We need to understand what a good life means to autistic people themselves.”
3. Prioritize real-life issues.
Academics often design research projects that don’t address the small, daily challenges that people with autism encounter in their lives. To make a real impact, Dr. Pellicano said that research should focus on helping autistic people navigate everyday experiences like doing the shopping or catching the bus. Research should move from the big to the small, focusing on the everyday aspects of life rather than abstract concepts.
4. Shift focus from the individual to the contextual.
A person’s environment affects the way they navigate the world. This is particularly true for autistic people who may struggle to cope with sensory and social stimuli in ways that affect their behavior and functioning. However, researchers sometimes neglect to consider the context when studying people with autism. They tend to see a person’s behavior or challenges as an individual trait rather than a product of the environment.
For example, many autistic people use stimming as a way to self-soothe and regulate their emotions when they are in an overwhelming environment. In the past, researchers have framed stimming a behavior with no clear purpose or function that prevents a person from learning other adaptive skills. By framing stimming as an individual deficit, researchers have directed attention away from the environmental context that creates the behavior. Attention would be better directed towards social interventions that shift the negative societal perceptions of stimming.
5. Prioritize autistic perspectives.
Autism science is often designed and conducted without input from autistic people, leading to research that rarely relates to the daily challenges that people with autism face. In fact, researchers typically rely on lab-based observation rather than autistic people’s perspectives.
This can lead to flawed results, because many experimental tasks conducted in the lab lack representativeness (meaning they don’t correspond to real-life settings) and generalizability (meaning they don’t predict performance in real-life settings). For example, many autistic people can easily pass tasks measuring executive function in the lab, but struggle with related tasks in their everyday lives.
To drive more impactful research, academics should seek input from autistic people in all phases of the research process, including design, implementation, analysis and interpretation of results. People with autism should be active collaborators and partners so that their lived experience can inform the research.