What Does Inclusion Mean in Research and Scholarship on Autism in Adulthood?

The pace of research is notoriously slow. Cultural change in academia can be even slower. But sometimes we get to witness—and possibly contribute to—what may seem like a sea change or tipping point. There are days when I am convinced we have reached such a tipping point with regard to the inclusion of autistic adults in research and scholarship. In some ways, I could never have imagined how quickly the autism field would change—in a positive direction—over the past decade. And yet there are others days when I am filled with apprehension and questions: what does inclusion even mean? How much of the current rhetoric is authentic? What are the potential harms of researchers just trying to “jump on the bandwagon” of inclusion? How do we include the entire autism spectrum? What is the role of those of us who have fiercely pushed for inclusion, but are not on the spectrum ourselves?

Early in my career as a health equity researcher, I fell in love with participatory research approaches, where members of the community being studied are included on the research team. I saw first-hand what a positive effect partnering with communities of color had on the quality and impact of my research. After my 3-year-old son was diagnosed with autism in 2004, I started listening to (and reading) what autistic adults had to say, simply as a way to understand how I could best parent my own child. I soon realized that the frustrations autistic adults expressed about research that was being done “to them” instead of “with them” closely mirrored those of other marginalized communities. By 2006, an autistic community leader—Dora Raymaker—and I co-founded the Academic Autism Spectrum Partnership in Research and Education (AASPIRE; www.aaspire.org), an academic–community partnership that uses a community-based participatory research approach to address the priorities of autistic adults.¹ Our intent, from the start, had been to include autistic adults as equal partners throughout all phases of the research process, both to improve the impact of our own research and to try to, in some small way, contribute to long-term social change.²

Moving from health equity research, where participatory methods are highly valued, to the world of autism research was challenging. Whereas I was used to having to convince grant or manuscript reviewers that we were truly learning from community members and equitably sharing power, we now had to convince reviewers that including autistic adults in research was even possible or desirable. Early reviews of our proposals and articles included such dehumanizing and demeaning comments about autistic adults—and their supposed inability to meaningfully contribute to research—that sharing their comments with my autistic partners was trauma inducing in itself, reinflicting the pain of having their personness and humanity repeatedly questioned.

Thankfully, the field is rapidly changing. Autistic adults have fought hard for inclusion in research^3,4 and we are starting to see the results on many levels. For example, autistic members on the Interagency Autism Coordinating Committee—the advisory committee that coordinates federal efforts related to autism in the United States—have had a strong voice in shifting the national research agenda to include the priorities of adults on the spectrum.⁵ Funders such as the Organization for Autism Research (in the United States) and Autistica (in the United Kingdom) include autistic people in making funding decisions and setting prioroties.⁶ A growing number of autistic adults are earning advanced degrees and entering academia as “insider researchers.”⁷ And although a 2014 scoping review still identified AASPIRE's early studies as the only examples in the published literature of participatory research with autistic adults,⁸ one can barely keep up with the growing calls for participatory research and the many research groups that are now including people on the autism spectrum as advisors or co-researchers (e.g., www.autismcrc.com.au; www.PARCautism.co.uk; www.research.ncl.ac.uk/adultautismspectrum; www.autistichealth.org).

At this juncture, it is absolutely critical that we support people on the spectrum to enter academia as professionally trained researchers and scholars. Doing so goes beyond accepting autistic students into educational programs. Those of us who are in more senior positions need to commit to making academia, and our various professional spaces, more accessible to and accepting of autistic students and faculty; to provide them with mentorship and support; and then to be humble enough to learn from them, and where appropriate, to get out of their way. This growing cohort of autistic researchers and scholars has great potential for positively transforming our field. At the same time, the inclusion of autistic adults as academics in no way lessens the need to include the perspectives of people on the entire autism spectrum, including those who may not have the ability, resources, privilege, or interest to ever pursue an academic career.

Hence my excitement about the rapid growth of participatory approaches that also include autistic community members outside of academia. Yet with big changes comes the risk of big pitfalls. As the expectation to include autistic people in research grows, so does the risk of tokenism, broken promises, and exploitation. Although it has gotten easier over time to convince reviewers that our team's participatory approaches are feasible and beneficial, I now often find myself in the position of reviewing autism-related grant proposals or manuscripts that claim to use a participatory approach, but sadly only seem to do so in name. Authentically including autistic community members on a research team is certainly possible and worthwhile, but it takes a considerable investment of time, energy, and resources, as well as a true willingness to learn and share power. Several groups have created useful guides and checklists for conducting participatory research with autistic adults, based on theoretical considerations and the preferences of community members.^9,10 Moreover, AASPIRE has recently conducted a 12-year institutional ethnography and used the findings to create practice-based guidelines for the inclusion of autistic adults in research, either as co-researchers or research participants.¹¹ Time will tell whether and how any of these tools will be used, what their effect will be in promoting true inclusion, and how they need to be improved.

It is in this context that the Autism in Adulthood Editorial Board and I have tried to create a new model for an inclusive peer-reviewed journal. Our expectation is that the inclusion of autistic adults—as editors, board members, authors, round table participants, reviewers, and readers—will significantly increase our journal's impact. And by impact, I mean our ability to provide new insights and high-quality evidence to promote the practice, systems, and policy changes needed to enable autistic adults to lead more healthy fulfilling lives—not only our Impact Factor. Our experience assembling our first two issues has only increased my enthusiasm. I cannot begin to express how grateful I am to the many people—both autistic and nonautistic—who have come together to make our journal a success. Of course, as a new journal, trying to forge new ground, we have a lot to learn about how to make our submission and review processes even more accessible. And we need your help to make the journal grow, be it by submitting your work, serving as a reviewer, or becoming a subscriber.

The journal's commitment to inclusion shines through in this issue in multiple ways. When we first assembled our editorial board last year and wrote our policy on the use of language, we quickly came to consensus on the recommendation to use strengths-based as opposed to deficit-based language. However, we also recognized that there isn't always a clear picture of what strengths-based approaches look like. In this issue's Round Table discussion, five experts (two of whom are on the spectrum) from a wide range of disciplines go beyond the simple contrast between strengths-based and deficit-based models to forge a nuanced understanding of what strengths-based approaches should mean in autism. Interestingly, although we did not intend the conversation to focus on participatory methods or inclusion, the discussants naturally brought up the importance of including autistic adults in research throughout the discussion. Some of the issues brought up in the Round Table, including concerns about falsely dichotomizing traits as strengths versus weaknesses, are echoed and further explored in the qualitative study by Russel et al. on the “autistic advantage.”

As discussed in the Round Table, strengths-based models must not overlook the real challenges associated with autism. And of course, inclusion must apply to the whole spectrum, not just those with stereotypical autistic strengths. But theory can be harder to put into practice when it comes to nonspeaking autistics or those with very high support needs. D.J. Savarese's Insight Essay, “Coming to My Senses,” skillfully provides the reader with a glimpse into the mind of a nonspeaking autistic poet who is not afraid to embrace the beauty of his autistic perception while hating the challenges.

Similarly, the Perspective article by Hillary and Dalton reminds us that alternative and augmentative communication (AAC) is not only for nonspeaking adults. Although there is little research in the academic literature on the use of AAC by autistic adults who can speak, the authors review what speaking autistic adults have publically posted about their AAC use. They use these insights to offer practical recommendations about AAC use in speaking adults and to outline an agenda for future research.

In this issue, you will also find an Advancing Methods article by Raymaker et al. on “The Development of the AASPIRE Web Accessibility Guidelines for Autistic Web Users.” (Note: we have clear policies for editors to recuse themselves from the peer review process when they have conflicts of interest.) Dr. Raymaker is an exceptional example of an autistic adult who started off as a community partner, but who has transitioned into an academic role. Her dual perspective made her particularly adept at leading the participatory process we used to create the accessibility guidelines. We hope the guidelines can help other researchers and developers create websites that best meet the needs of autistic users, thereby increasing the inclusion of autistic adults in daily life.

Finally, we do not expect all articles published in the journal to have autistic authors or use participatory methods. However, in addition to the traditional scientific peer review process, articles undergo an “autistic review” by at least one autistic adult to ensure that the articles we accept use respectful language and concepts, and address issues that are important to the autistic community. In this issue, you will find articles on high-priority topics such as vocational rehabilitation services, personal relationships, and the treatment of co-occurring phobias. All articles also have a freely accessible lay language summary targeted to autistic adults and other stakeholders.

It is dizzying sometimes to think how much autism research has changed over the past decade and how far we still have to go. Are we at a tipping point? What will it take to make the inclusion of autistic adults in research an expectation throughout the field? How can we ensure that inclusion is authentic and not tokenistic? How can we include autistic people across the entire spectrum? How do we handle the, at times, deep divisions within the autism community? And what will we, as a field, lose if we do not find ways to authentically include autistic adults in research? No one can answer all those questions now, but I am thrilled to have the opportunity to lead this new exciting journal and watch what happens as we move forward. With your help, we can make a real impact on the scientific literature and, ultimately, on the lives of autistic adults across the spectrum.