Current trends in autism research—the helpful & the harmful

In this article, we explore the main focuses of autism research today, where they originate from, and how different research practices help or harm the autistic community. We also highlight the positive directions in which autism research is headed.

Traditional trends in autism research

Deficit-based narratives

The vast majority of research on autism aims to characterize our “deficits.” Studies focus on comparing autistic brains and behaviours to allistic brains and behaviours with the intention of identifying a new way that autistics are “impaired” compared to what is considered “normal.”

Pellicano & Houting (2021) describe in their review article that in order to stick with the goal of characterizing autistic deficits, some researchers will even downplay instances where autistics are found to demonstrate more of a desired quality than allistics. Moreover, they sometimes re-frame the findings altogether to make autistics seem deficient.^[1]Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (Pellicano & Houting, 2021)

In my recent article on theory of mind, I give the example of an experiment in which individuals chose between incurring a personal loss but funding a morally good cause versus receiving a personal gain but funding a morally bad cause.^[2]Right Temporoparietal Junction Underlies Avoidance of Moral Transgression in Autism Spectrum Disorder (Hu et al., 2021) Researchers found that autistics made the same choice to support a good cause even when the choice was private and no one would know if they chose to support the bad cause for more personal gain. In comparison, in private, allistics tended to switch their choice to funding a morally bad cause for personal gain. Amazingly, the researchers claim these findings demonstrate that autistics have poor social understanding. They conclude that autistics are unable to recognize situations when making a moral transgression is beneficial and without social reputation costs.

Instead of what the researchers claim, I view this as an instance where autistic traits are actually more societally desirable than allistic traits. These data show that autistics tend to act with integrity. Unlike allistics, our moral values are not usually contingent upon social and situational circumstances. It is upsetting that researchers feel the need to spin their findings to fit the narrative that autistics must always be deficient.

Determining genetic causes of autism

A second trend in autism research is to determine the genetic causes of autism. Many neuroscientists, psychiatrists, and geneticists are given millions of dollars every year to fund this research. Some argue that this money could be better spent on understanding what supports would benefit the autistic community. However, these two notions don’t need to be mutually exclusive; but it’s important to make sure that research on genetic causes promotes a better understanding of autism and is ultimately used for the benefit of autistic people as well—such as better informing clinicians, finding ways to improve our mental health, and helping us navigate life more easily. What is concerning, however, is that genetic research often aims to prevent autism in future generations. This does not align with what the autistic community as a whole advocates for. Even though many members of the autistic community continue to express that this research is not a priority for us, this trend persists.

Despite the numerous calls from the autistic community to shift the focus of research away from pathologizing narratives and towards investigations about how to best serve the needs of the autistic community, the majority of research in 2023 continues to focus on the above goals.

How did we get here?

One major influence in the field of autism research came from research conducted by Dr. Simon Baron-Cohen in 1985 on the relationship between theory of mind and autism.^[3]Does the autistic child have a “theory of mind”? (Baron-Cohen et al., 1985) You can read more about theory of mind research in my article on Autism & theory of mind—what’s new? In sum, this field of research led to the popular view that autistics are unable to empathize with others or understand the intentions of others. It even went as far as to imply that since these behaviours are what distinguish humans from animals, autistics must be less human.^[4]Mindblindness: An Essay on Autism and Theory of Mind (Baron-Cohen, 1997)

Even though the relationship between theory of mind and autism has been clarified since the 1980s, the negative portrayal of autistics remains and continues to influence how autism research is conducted. For example, this view of autism dictates whose perspectives are valued in research. If autistics are perceived to have low theory of mind, low empathy, and low understanding, then we are also seen as incapable of defining our own needs. Furthermore, it is assumed we are unable to accurately describe our own experiences. Consequently, we are viewed as incapable of knowing what research would benefit us the most.

Who traditionally gets to decide what research is conducted?

These narratives about autism and theory of mind have historically biased who gets to decide what type of research is conducted about autism.

In terms of designing research studies, most researchers are not autistic themselves. Thus, it’s safe to say that for the most part, we are not at the forefront of deciding what type of research should be conducted. While some autistic researchers do exist (myself included), we are in the minority.

In terms of collecting data, Pellicano & Houting (2021) discuss how autistic perspectives are commonly devalued. Most researchers favour reports from parents and teachers, or lab observations, over self-reports by actually autistic individuals. We are not perceived to be credible sources of information, even when the information is about our own lived experiences.^[5]Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (Pellicano & Houting, 2021)

Since many researchers devalue autistic perspectives, priority is placed on conducting studies that do not benefit the autistic community. In this case, the focus is on characterizing deficits and then targeting these deficits with treatments and preventative measures.^[6]Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (Pellicano & Houting, 2021)

How are these research trends harmful?

Up until now, I’ve only hinted at how these research trends are harmful to the autistic community. Let’s explore some harms more directly:^[7]Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (Pellicano & Houting, 2021)

• When research considers autism to be the result of deficits, then there is little impetus for creating supports. A deficit-based lens implies that autism is an individual problem, not a problem with inclusivity and accessibility.
• If researchers view us as defective, it becomes justifiable to conduct unethical research on us, to exclude our voices from research, and to subject us to controversial treatments.
• Not considering autistics to be credible researchers and research subjects mean that our needs will never be a main focus of research.
• This is evidenced based on current research priorities. A deficit-based mindset means that the underlying goal of research is to find ways to treat/cure autism and make people “less autistic.” Or, to put it bluntly, to eradicate the autistic population.
• Accordingly, millions of dollars fund research looking at the genetic causes of autism. Autistic community members have already shared that this line of research is harmful, yet it continues to be funded.
• Importantly, even if neuroscientists like myself find understanding neurobiology and genetics interesting, this knowledge may not be worth pursuing when it can be and already is being used to support eugenics.

Neurodiversity-affirming trends in autism research

Recently, there has been a push for research to take on a more neurodiversity-affirming approach. This means viewing the autistic experience as an equally valued neurobiological presentation. Embracing neurodiversity in science means shifting the focus of research away from characterizing deficits, searching for causality, and trying to prevent or cure autism. Instead, it prioritizes autistic mental health and increases inclusivity and accessibility. Here are some ways that research can be neurodiversity-affirming:

Prioritizing autistic perspectives

We are (finally!) moving away from research that is defined by what clinicians/parents want to study and towards what actually autistic people want to study. Research that prioritizes autistic perspectives values autistic voices at every stage of the research process:

• The autistic community defines what our own needs are. We know what supports would benefit us and we know how our mental and physical health is impacted by a lack of accessibility and inclusion.
• Researchers listen to autistic voices first, and then design studies to investigate how to meet these needs. This is in contrast to designing studies without first consulting with the autistic community and thereby investing in research that may not serve us.
• This perspective includes asking autistic individuals (not just clinicians/teachers/parents) about our experiences, and trusting our narratives as valid and valued sources of information. This applies both when deciding what research is important, and when participating in autism research studies.
• This also reflects a need to include autistic researchers as research team leaders and contributors. We know how best to design studies that work for autistic minds. For example, we recognize that commonly used neurotypical tests may not work for autistics and may lead to invalid findings. We have the lived experience and the community resources to design studies that make sense for autistic brains.

Prioritizing accessible research

Having more access to research allows us to directly engage with findings that may benefit our life. The majority of research has traditionally been hidden behind paywalls or within universities. However, a recent push for more open-access publishing means that autistics don’t need to rely as much on the interpretations of clinicians and scientists who consume research to learn about the findings. More and more findings are becoming publicly available to anyone who has access to the internet. Consequently, more and more members of the autistic community are able to discuss which research findings have been helpful to us versus harmful. We are also able to contribute our own interpretations of the findings based on lived experiences. We hope that the “open-science” movement continues to grow so that we all have access to consuming and contributing to scientific innovation.

Recognizing intersectionality

Researchers are beginning to recognize the importance of intersectionality when studying autism. This means recognizing that not all autistics have the same lived experiences and thus our needs are different as well. For example, recognizing that black, Indigenous, and other people of colour (BIPOC) have different lived experiences with autism than white individuals. Similarly, transgender, non-binary, and other gender-diverse individuals have different lived experiences with autism compared to cisgender individuals. Importantly, this also includes the diversity of autistic experiences in relation to support needs. An autistic individual who is non-speaking will have different lived experiences and needs than autistic individuals who do speak. We are (slowly) becoming more inclusive of these intersectional experiences in autism research.

How are these research trends helpful?

When research is intersectional, led by autistic voices, and accessible to all consumers, everyone benefits. Here are some ways these neurodiversity-affirming research practices serve us all:

• When autistic perspectives are involved in designing and conducting research, money is spent on avenues of research that actually benefit our community instead of on pursuing studies that do not serve our needs.
• Additionally, involving autistic perspectives ensures that studies are designed in ways that make sense for autistic brains instead of based on the assumption that all brains operate in the same way.
• When research is accessible, everyone can learn about autism. We don’t have to rely on second-hand information.
• When we consume autism research directly, we are able to have a say about whether the findings make sense for our experiences. For example, generating different autistic phenotypes is a popular avenue of research. We can clarify how defining different subtypes of autism is beneficial when it is used to identify helpful supports, but it is harmful when it is used to create functioning labels or “cures.”
• Neurodiversity-affirming research practices are validating and can help us understand ourselves better without pathologizing and shaming our different neurology and experiences. This approach supports our mental health instead of harms it.
• Finally, neurodiversity-affirming research teaches us about the ways in which ableism affects our experiences. It recognizes that our struggles largely relate to inaccessibility and exclusion and not an individual failure or deficiency.

What are your thoughts on autism research? Do you find certain trends to be harmful or helpful? What autism research topics would you like to see more of?