Unmasked: Openness and Self-Advocacy in Research

This is the third article in Unmasked, a series by undergraduate Chris Walsh ’25.5. With a mix of personal perspective and research analysis, Unmasked addresses the public health value of greater openness and self-advocacy around autism.

In my last article, Openness and its Impact on Self-Advocacy in Daily Life, I explored the new avenues for self-advocacy that openness can offer autistic people in their personal lives. Now, let's take a look at how openness benefits self-advocacy in the realms of autism research and advocacy. 

Autism research and autism advocacy are fields of inherent concern for autistic people. Both aspire to improve autistic people's quality of life. However, the little room they have historically offered for autistic input has limited the value they can deliver to their intended beneficiaries: autistic people. A larger openly autistic population would allow for more watchful eyes to ensure the research world is accountable to its intended end beneficiaries. Not all autistic people will be interested in autism research or advocacy, of course, but for those who are, openness enables freer, more meaningful engagement with these fields. 

Increasingly, the research and advocacy fields are realizing that autistic engagement will drive their work forward in much needed ways. While this is a work in progress, the fact remains that it is advancing. As a greater number of researchers and advocates seek autistic collaboration, openness can make you a more attractive and impactful collaborator. Being autistic as an autism researcher or advocate can add both insight and credibility. For instance, imagine that you're an autistic college graduate working on a project to make college education more accessible to future generations of autistic students. Or maybe you're hypersensitive to loud background noise, and you're studying methods for reducing the impact of background distractions on autistic social skills.

While researchers often interact with autistic people as test subjects, they are likely to find new insights when autistic people are their peers or partners.

Christopher Walsh, UG
Man smiling

While any researcher could analyze the issues at hand, autistic researchers have a competitive advantage because they can do that plus better understand the challenges and their nuances through their personal experience. They also have a greater stake in seeing the issue successfully addressed. 

The saying goes that if you've met one autistic person, you've met one autistic person; so one autistic researcher or advocate's experience might not be generalizable to all people on the spectrum. For example, some autistic people are hypersensitive to noise while others are hyposensitive. However, in the long run, the more engagement that occurs from a variety of autistic people, the more autism research and advocacy will reflect the spectrum of autism as it is lived. 

Openness can also help build community among autistic autism researchers and advocates. If researchers and advocates can recognize each other, they can collaborate and share insights more easily. By being open yourself, you increase the odds that other autistic people who are around you will feel comfortable opening up to you. There is no disputing that (predominantly nonautistic) research institutions are aware of autism. In practice, this awareness is sometimes limited to the concept of autism, and comes at the expense of active listening to, and the empowerment of, autistic people in the research process. While researchers often interact with autistic people as test subjects, they are likely to find new insights when autistic people are their peers or partners.

A Case Study

What follows is a tale of two research institutions. For decades, a prestigious research institution that we'll call Prestigious Research Institution (PRI) has been a globally recognized leader in autism research. This research center has the backing of a university with one of the largest endowments in the world. The other institution, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE), founded in 2006 at Portland State University, has few resources and is just beginning to make a name for itself in autism research. 

In 2020, one of these institutions published a seminal paper on a mental health phenomenon that some people on the spectrum have called 'autistic burnout.' While usage of the term in the autistic community stretches back over a decade, this paper was the first empirical study to take a deep dive into the phenomenon and highlight the need for further investigation. Which institution sponsored this research?

The correct answer is AASPIRE. AASPIRE studied the trend not only before Prestigious Research Institution, but also before PRI's peers in the research community. PRI and its deep-pocketed peers had a decades-long head start over AASPIRE. But there is a reason this small institution is punching above its weight class with high-impact research for the autistic community: it was co-founded by an autistic researcher and emphasizes bilateral, autistic-nonautistic collaboration.

“ While autistic-driven autism research is still a nascent phenomenon, it has already yielded impactful discoveries and quality-of-life improvements that benefit people across the spectrum. ”

Christopher Walsh, UG

AASPIRE’s co-founders, Dora Raymaker and Christina Nicolaidis, aim to produce research that delivers more tangible benefits to autistic people in their daily lives – especially autistic adults, who are often overlooked by research studies. AASPIRE practices community-based participatory research (CBPR), wherein researchers and members of the community being researched collaborate as equal partners to identify priorities, share varying forms of expertise and perspective, and reduce the potentially harmful power dynamic between researchers and members of a marginalized population. 

Progress in the Field

While autistic-driven autism research is still a nascent phenomenon, it has already yielded impactful discoveries and quality-of-life improvements that benefit people across the spectrum. Autistic burnout is one of these discoveries. Per a frequently-cited autistic-led study, autistic burnout is a form of chronic exhaustion, often accompanied by executive functioning or mental health challenges, that occurs from the cumulative effects of navigating a neurotypical-centered world and its expectations. Given the frequency of co-occurring mental health conditions among people on the spectrum, autistic burnout is a highly relevant and useful new understanding. The concept has made its way beyond the research world into the global press and onto mental health professionals' radar. 

Another breakthrough research finding has been the double empathy problem. First described in scientific literature by Damian Milton, an autistic parent of an autistic son in 2012, the double empathy problem states that in social interactions between autistic and nonautistic people, empathy is a two-way street. While pre-existing scholarship focused heavily on the trouble that autistic people can have empathizing with nonautistic people, it overlooked the converse: nonautistic people can struggle to empathize with autistic people. One example of the double empathy problem in action is with sensory stimuli. An autistic person may struggle to manage sensory distractions during a social interaction, while their nonautistic counterpart may struggle to imagine and appreciate their partner's sensory-processing differences. Scholarship on the double empathy problem has had high impact in the research world over the past decade. It has been demonstrated consistently and persuasively enough in studies since 2012 that even Simon Baron-Cohen, a Cambridge professor who had originally promoted the since-disproven theory that autistic people are "mind-blind," lacking empathy, now positively reviews the double empathy theory. 

In the real world, this theory stands to transform how we think about social skills education in the future. Today, social skills interventions for autistic people have limited efficacy in real-life scenarios because they shortsightedly focus only on changing the autistic person. In the future, for mutually constructive social interactions, both parties must accommodate and empathize with each other. Double empathy problem research demonstrates the inefficiency for both parties if we place the full burden of alleviating autistic-nonautistic misunderstandings on autistic people.

Meanwhile, Mary Doherty, founder of Autistic Doctors International, has made strides toward identifying changes at the doctor's office that can improve the experience of patients coming from a variety of points on the spectrum. She and other autistic doctors bring a unique perspective to this issue as both care providers and autistic recipients of care. Along with Sue McCowan and Sebastian C.K. Shaw, Doherty developed the SPACE frameworksensory needs, predictability, acceptance, communication, and empathy – for the factors that doctors should consider in making their offices more accessible to autistic patients. 

Practical steps she recommends range from training doctors to understand the root causes of distress behavior, fixing potentially distracting sensory stimuli like flickering lights promptly, and building in additional time for appointments with patients who communicate through nontraditional methods like augmentative and alternative communication. Doherty and her colleagues particularly emphasize the critical role of effective communication beyond the spoken word; after all, it is the 25-30% of autistic people who are nonspeakers that often face the greatest barriers navigating healthcare settings. 

All of these examples highlight how autistic-driven autism research can deliver benefits to people across the spectrum with a variety of support needs. 

More openly autistic people translates to more people who can hold researchers, public policymakers, and service providers accountable for delivering real and tangible value to the people for whom they work. Their best bet is through meaningful engagement with autistic people. Autistic autism researchers show the particular value that comes from autistic people leading research that aims to improve autistics' quality of life. In my own experience, I have also found it very rewarding to be involved in autism research and advocacy, and I hope in some small way I can benefit others. If you're autistic and interested in autism research or advocacy, openness can be an empowering force that lets you engage more freely and impactfully with these fields.