Building an Academic Home for Research on the Most Pressing Issues Affecting Autistic Adults: Reflections on Our Journal's First Year

When we launched Autism in Adulthood, I put forth the vision that the journal would become “the academic home for the research and scholarship that will ultimately enable all autistic adults to lead healthy, fulfilling lives.”¹ As this issue—the final one in our first volume—goes to press, I am in awe of how quickly and effectively our emerging field has come together to support this goal. I cannot begin to express my gratitude to our editors, editorial board members, peer reviewers, authors, readers, and publishers who have made the journal possible. As I look toward the future, I am humbled by how much we, as a field, need to do to truly create a world where all autistic adults lead healthy fulfilling lives.

In crafting our “aims and scope” (www.liebertpub.com/aut), the editorial board members and I said that the journal would “cover the most pressing issues affecting adults on the autism spectrum, from emerging adulthood to later life.” At the end of our first year, I ask myself—“has it?” The content of any journal depends on many factors, including those we can fully control—for example, the journal's description of its aims and scope, its policies and practices, and a myriad of day-to-day editorial decisions—and those that we can only partially shape, such as the selection of articles submitted to the journal and the outcomes of each peer review.

I am pleased to say that, yes, Autism in Adulthood is covering many of the most pressing issues affecting autistic adults. For example, in our first year, the journal published four articles on employment (including Hayward et al.'s qualitative study, in this issue, of what autistic women want at work); seven articles on the health and health care of autistic adults (including Kinnaird et al.'s brief report, in this issue, about self-reported eating disorder symptoms in autistic men); four articles on secondary education; three articles on friendships and loneliness; five articles on autistic strengths or identity (including, in this issue, Frost et al.'s study on identity, community, and disclosure practices among autistic college students and Angulo et al.'s study on autistic perspectives on neurotypicality); two articles on strategies to promote community inclusion, for example, by enhancing driver training or web accessibility; one article on gender identity; one perspective on alternative and augmentative communication and two essays by nonspeaking autistic adults; and two studies, both in this issue, on stigma (DeBrabander et al.'s study on first impressions of autistic adults and Stevenson and Mowad's study of negative explicit associations with autism and disability).

Of course, we are just starting to scratch the surface. What else do we need to understand about hot topics such as employment, mental and physical health, education, communication, gender, or inclusion? Personally, I would love to see more work that translates research in these areas into effective practice. We are also looking for high-quality submissions on many of the other topics listed in our scope, such as housing, community participation, economic well-being, quality of life, sexuality, sensory processing, executive function, or ethics. And I hope to deliver on the full age range we promised to cover. To date, studies published in the journal have had a very good spread of ages from late adolescence to mid adulthood. But we still see a paucity of studies focused on older adults or the effects of aging.

An even bigger challenge, both for our journal and in the entire field, is effectively addressing issues of intersectionality. Our scope statement calls for articles on the “intersectionality of autism and race, ethnicity, nationality, gender, sexual orientation, disability, class, trauma, discrimination, and other social determinants of health.” I have been pleased to see several articles that specifically focus on the experiences of autistic women, and a few that consider gender identity more broadly. Yet I am saddened by how few studies—both in our journal and in the literature overall—address other areas of intersectionality. Having started my career working on racial equity issues unrelated to autism, I am particularly struck by how little autism research addresses race and racism. As a field, we absolutely need to do better! At the same time, I cannot help but notice how often discussions centered around racial justice completely disregard disability justice. As we try to improve the lives of all autistic adults, it is imperative that we consider the many intersectional marginalizing factors that cannot be separated from one another, and that we find ways to effectively partner with people working to address other forms of injustice.

As an international journal, it is also important that we include research from all over the world. In our first year, we have published articles from many countries, but—like the autism literature overall—most have come from North America, Europe, and Australia. As such, this issue's round table discussion, led by our Board Member Dr. Singhal, purposefully brought together seven leaders from five low- and middle-income countries to discuss the current status of autistic adults in their countries and to explore what needs to happen in the future. I look forward to soliciting more submissions from across the globe.

My one greatest hope was to create an inclusive journal that “integrates the contributions of autistic adults—as editorial board members, authors, peer reviewers, and readers—into the peer-reviewed literature.” It is one thing to put such a statement into the journal's scope and aims, and another to truly make it happen, especially in a field that historically has ignored the voices of autistic adults. I am thrilled by the many ways that our new journal has disrupted “business as usual.” Ten members of our editorial board, including our journal's Associate Editor, Dr. Raymaker, openly identify as autistic, bringing their strong voice to all high-level decisions. In addition to other contributions, they have shaped our journal's values, scope of work, and language policy, setting very high standards for respectful strengths-based terminology and concepts. Fifteen of the 45 articles published in Volume 1 have one or more authors who openly describe themselves as being autistic—an amazing statistic given what a miniscule fraction of the overall peer-reviewed autism literature is created by autistic authors and researchers. We instituted a novel approach to peer review, where each article is reviewed by at least two scientific reviewers and at least one autistic adult. Although in some cases, autistic scientists fill both roles, in most cases, autistic reviewers have come from outside of academia. Reviews from autistic adults have helped us choose articles that are relevant to the autistic community and have ensured that lay summaries provide clear substantive information targeted to autistic adults and other stakeholders. They also have resulted in significant improvements to many articles, for example, by offering recommendations for how to present information in a more respectful or strengths-based manner or by pushing authors to be clearer about the practical implications of their work. Of course, anything that disrupts the norm brings challenges, too. I can assure you that the peer-reviewed literature—and all its traditional review processes—was never set up to be accessible to autistic adults! But I am proud of how far our journal has pushed the boundaries of inclusion and look forward to continuously improving our processes and accessibility as we move forward, both strengthening our own journal and serving as an example for others in the field.

Finally, we as a field need to ensure rigor in our research for it to truly have impact. As a mixed-methods researcher, editing a highly multidisciplinary journal, I respect that different disciplines, paradigms, and methodologies have different definitions of rigor. At the same time, there are many common challenges in conducting research on autism in adulthood that none of us have yet solved. For example, how does one obtain a truly representative sample when traditional systematic recruitment approaches clearly do not translate well to research on autism in adulthood? Or how do we ethically and effectively collect information directly from autistic participants with a wide range of disability characteristics or communication barriers? Or how do we match eligibility criteria for research to what makes sense in the practical real-world settings where such research may be used? I hope our journal can play an important role in advancing research methods for our burgeoning field. For example, we plan to start Volume 2 of Autism in Adulthood with a special issue devoted to measurement. At first glance, measurement issues may not seem as exciting as the many hot topics already described—yet they are critical to the success of any research project. We are particularly interested in measurement outcomes that are meaningful and relevant to autistic individuals, and in measurement approaches that are accessible to the full autism spectrum.

As we close this first volume of Autism in Adulthood, I think back to when, about 2.5 years ago, Mary Ann Liebert, our publisher, called to invite me to become editor-in-chief of the journal. I certainly had not planned on becoming a journal editor, nor was I looking for new service commitments to add to my already overwhelmingly busy job. Yet I also knew that I would forever regret it if I let this incredible opportunity to shape our emerging field go by. Not because I can or wish to shape anything singlehandedly—but because being editor-in-chief offers me the power and privilege to invite others to the table and collaborate with them to create change. It is those amazing people—especially our autistic and nonautistic editors, editorial board members, authors, and reviewers—who have shaped this first volume and who will continue to shape research and practice. Thank you for a great first year and join us as we continue to build a home for the research that will ultimately enable all autistic adults to lead healthy fulfilling lives.