By Sam Voltaire
While autism research and autism acceptance has grown in stride over the last few decades, the perspectives and needs of Black autistic people have been consistently pushed aside (at best…). You might be wondering, “How is that even possible?”
Let’s start with representation in research.
The lack of representation in sampling autistic youth and young adults (and their families) leads to less abundance of specific research findings. Sure, studies report demographics on race and ethnicity all the time. However, if researchers are not taking the time to build community relationships and establish trust (a vital step due to historical grievances by researchers in Black communities), and if they are not recruiting enough Black autistic people into their studies, then we miss crucial information. Without these two in conjunction, researchers are unable to share conclusions or highlight the intersectional experiences that are specific to Black autistic people and their families.
This doesn’t just affect knowledge from researcher to researcher: issues of under-representation also show up in practice.
There are tangible impacts on autism services like diagnosis. Studies show that Black autistic children are more likely to be misdiagnosed than their peers and to be diagnosed later, which leads to further delays in getting connected to needed services. This lag persists even in adulthood, as Black autistic adults are less likely to have access to services. Black autistic people and their families must manage to navigate systems while dealing with racism in both its structural and interpersonal forms and is further compounded based on any additional marginalized identities they may hold, such as income, gender, and sexual orientation.
Solutions to under-representation may seem daunting, but there are several ways in which researchers and practitioners can help pivot to support Black autistic people. Here is a non-exhaustive list to start:
Intentionally include Black autistic people
Research, policy, and practice processes are full of opportunities to involve Black people, particularly Black autistic people. This can present in a myriad of ways, from hiring Black autistic scholars, working with Black autistic scholars to establish research and policy agendas to incorporating the use of advisory boards with Black autistic people and their families, or implementing the principles of community-based participatory research (CBPR) where establishing trust with communities is ingrained in the process.
Incorporate intersectionality
Inclusion requires more than just reporting the demographics of Black individuals in a study or program. Black experiences are nuanced and diverse, and we lose out on the complexity of these experiences when researchers do not look at the effects of multiple marginalization, and rather, report on siloed demographics. Black autistic girls and women and Black autistic LGBTQ+ individuals report later diagnosis than their Black cisgender, male peers yet research on these groups remain scant to this day.
Look internally
While there are several ways to address racism in the field and create more equitable research and policy, a key (and personal) step is to look inward. Malone et al recommend that researchers work to understand the ways that their own values and experiences influence and shape their research.7 Building on this, researchers and practitioners should also take time to understand the role that race plays (or does not play) in their personal and professional life. This step is key for establishing an antiracist practice.
It is beyond time for a change in autism research and practice. Making intersectional, equitable change in research and practice will require collaboration and dedicated effort, but it can – and should – be done. Black autistic futures – and present – depend on it.