Apr 05, 2023, 4:00 am UTC
Q&A: Navigating life as Black, female, and Autistic
Autism has a race and gender problem. For decades, it's been studied as "a White male's condition," leaving people of color and many women on the sidelines. Even today, most autism intervention studies do not collect data on race and ethnicity, feeding into the persistent invisibility of autism among people of color.
Lauren Proby, a sophomore at Spelman College in Georgia and policy fellow at Autistic Women and Nonbinary Network, is among thousands of Black individuals who've been misunderstood, misdiagnosed, and overlooked by the healthcare system.
wmnHealth spoke with Proby about the stereotypes that led to her receiving a late diagnosis and her efforts today as a disability justice advocate within the Black community.
This interview has been edited for length and clarity. The word "Autistic" has been capitalized at the interviewee's request.
wmnHealth: Many women face an uphill battle for diagnosis. What has your journey been like?
Lauren Proby: I was 16 years old when I received an official autism diagnosis. By then, I had been in and out of psychiatric hospitals almost 15 times. Nobody understood why I wasn't getting better with the mental health treatment I was receiving. Then, I came across videos about Autistic women — how autism presents differently in women than men and how a lot of Autistic women and Autistic people of color go undiagnosed, or misdiagnosed with mental health conditions they don't have. So, I saw a psychologist who did an evaluation and, lo and behold, I was Autistic. All my life, I was misunderstood because I was a Black girl who people cast aside, and nobody took the time to look a little bit closer to figure out what I really needed. Now, I have PTSD and depression as a result of not getting the help I needed.
All my life, I was misunderstood because I was a Black girl who people cast aside, and nobody took the time to look a little bit closer to figure out what I really needed.
People of color are often overlooked in autism diagnosis, and cognitive disabilities carry a stigma in the Black community. What challenges do you face as an Autistic Black woman?
Proby: Culturally, Black people have struggled to understand and accept complex mental health issues and disabilities. This may be because, historically, we haven't had the time to be disabled. We haven't had the time to seek out these services because we get no rest. I still can't be open about my disability because of the stigma, which stems from all the health inequities we've faced. And in the process, people who are disabled get erased, eliminated, and extradited from Black culture. It's as if you can't be Black, a woman, and disabled. You have to pick a struggle.
Did receiving the diagnosis help you?
Proby: It felt very affirming. It helped me understand myself more and to be able to put a name to the things that I had experienced. A few years ago, there weren't many articles or stories featuring Black Autistic women. I felt really isolated, but that is something that I'm grateful for now. Today, I am surrounded by other Autistic people I can relate to. So that is really affirming and meaningful to me, and something I didn't have access to before.
But my diagnosis made me angry, too, because nobody should have to go through the things I've experienced. It's so easy to get caught up in a system that chews people up and spits them out. And, as a Black girl, you have to deal with so much — racism, sexism, people's biases towards you, being labelled things that you're not.
Diagnoses tend to have a ripple effect. How has yours impacted your family and their perception of disability?
Proby: I'm very proud of my family because I have seen the growth, the ways in which they've committed to trying to understand my siblings and I better. After I got diagnosed as Autistic, my younger brothers were also professionally recognized as neurodivergent, and my parents became more open to exploring different types of help. I think my journey let them be more receptive to saying, "You know, this may not be working. It's okay to seek different types of help."
I still can't be open about my disability because of the stigma, which stems from all the health inequities [Black people have] faced. And in the process, people who are disabled get erased, eliminated, and extradited from Black culture. It's as if you can't be Black, a woman, and disabled. You have to pick a struggle.
How are you using your experiences to advocate for others?
Proby: A lot of disabled people are forced into activism, whether we want to be or not. I try to use advocacy as a tool to uplift myself as a disabled person as well as the wider disability community. For example, a lot of Black children experience excessive seclusion in schools. They're misdiagnosed, pushed out, and they face special education placements at a higher rate than their non-disabled peers or White counterparts. I am part of the Illinois State Advisory Council, and I represent those students with disabilities.
I also served as a Black Girlhood Studies Fellow with a nonprofit, Justice for Black Girls, where I contributed to our understanding of Black disabled girls. I'm also an Advisory Board Member of the Center on Youth Voice, Youth Choice promoting independent living for young adults with disabilities. And I've also worked as the Disability Justice Lead for Youth Activism Project, where I co-led the organization's Intellectual and Developmental Disabilities policy group.
What advice do you have for women finding themselves in similar situations where they're dismissed and overlooked?
Proby: In the autism community, self-diagnosis is valid because we recognize that so many people don't have access to professional diagnosis due to racial barriers, class issues, and other things that are very complex.
Also, I strongly believe that you have to communicate in ways that are most comfortable for you. And if you do have outside support, utilize that. This could be a parent, a friend, or a support group. Doing things and reaching out in the ways you know how — in ways that come naturally to you — is very meaningful. Don't limit yourself; don't place yourself in a box and think that you can't or are unqualified to do things.