A Story For Us, By Us
Photo Series of Black Unconventionality - Drake Murphy (Pt. 2)
During my pursuit of completing my psychology degree last year, I found that there was a profound scholarly neglect in research for autism in Black and POC communities. The lack of racial inclusion in research studies has resulted in disparities in autism diagnosis and treatment, particularly for Black and Brown children, which has led to delayed or misdiagnosis, stereotype amplifications, and other challenging biases. In any examination or discussion of disability, it is imperative to acknowledge the intersectionality of race. Initially, I wanted this interview to be a discussion surveying the intersectional challenges between disability and race, but I thought for right now, it would be more important to have a generalized conversation about autism in the Black community first. As a community, I believe it is essential to acknowledge all the experiences of Black lives. Throughout my creative journey, I want to continue having conversations and exploring the different facets of Black life.
This is a story for us, by us.
DB: As we move to the next subject, I would like to thank you for doing this interview and sharing your life with my blog. Sharing intimate parts of yourself can be highly anxiety-provoking, but your story is greatly appreciated. You’ve recently been diagnosed with ASD (Autism Spectrum Disorder). Could you discuss your journey to your diagnosis and how life has been post-diagnosed?
DM: Yeah, it started my first year of college. The first three years of college were very hard for me. Even though I was staying in-state for school, I had a horrible time adjusting; being away from home and having the autonomy to do things myself never really sunk in until the end of my sophomore year. I saw a therapist through the athletic department during my sophomore year of college. As I was talking to the therapist, he pointed out some things I was saying that stuck out to him, and I think maybe in our next session, he suggested that I get an assessment done for autism. I did not finish the evaluation until August of 2022, so it took me about three years to give in and do the test. When I got the test done, I was diagnosed with ASD, OCD, and depression. So that was a good bundle of things I got diagnosed with that were thrown at me all at once. While going through the testing process to see if I had ASD or if it was comorbid with other disorders, I did some research to review the criteria for ASD and kept note of it. As I was taking the test, I saw everything listed in the criteria as what I was doing. It kind of stood out to me because as I look back on my life and childhood, the things that I did make so much sense. I have special interests, and that’s a very prominent thing that people with ASD have. Another criterion is that many ASD children or ASD patients line up their special interests in a straight line or categories. So, when I was a child, and even now, I was a huge fan of Transformers. In the Transformers franchise, they had these toys that I liked, and I’d ask my mom to buy every single one or anything that dealt with transformers. Since I had the whole playroom to myself, it was full of Transformers. When I was finished playing, I would line up every single Transformer based on size; the smallest was in the front, and the biggest was at the back. So, that was one thing that I realized pointed to my ASD. Seeing these patterns or behaviors, I exhibited throughout my life and seeing how they actually mean something altered my life in a way where I can see things very clearly now. My behaviors are not just something I go through specifically, but a good amount of our population does. I just didn't know how to process all of this in my head, but now that I know all of this, I have such a clearer mindset or brain process that I can operate daily. Now, I can find ways to regulate these behaviors, especially my OCD.
DB: So, a question came up while you were talking. I want to know what made you wait so long to get tested. You said it took three years.
DM: It wasn't because I was scared. I wanted to know, but it just slipped my mind. The therapist pointed out the assessment at the beginning of 2020, but I never had time to do it. Then last year, I was like, you know what, screw it, I’m just going to do it now and get it over with, it shouldn’t take long. Mind you, the whole testing period took at least the entire summer. It went from May to August.
DB: You answered this already, but what signs, if there were any, that were evident that made you realize you needed to get tested?
DM: Like I said, the Transformers thing, but I had a few other special interests. Transformers was one of them, but I also deeply love praying mantises. I posted one on my page last Tuesday. I had found a small male mantis, and I was holding him, and he was crawling up on me. It was pretty adorable. I also have another special interest in Pokémon. It is very random, but I love Pokémon. My favorite one is Leafeon because it's a grass type of Pokémon, which coincides with my interest in plants. I just realized that as I was saying it, but Leafeon is my all-time favorite. I’ll always say that’s like peak design for that company. They can’t get any better than that. But yeah, I love Pokémon, praying mantises, Transformers, and now I love plants.
Also, another trait that many autistic people have is the lack of eye contact. A researcher did a study a while back with an experimental group of autistic people and a control group of neurotypical people, people not on the spectrum. The study tested eye contact in autistic individuals. I don’t remember all of the specifics, but the results showed that many autistic individuals have a very disoriented-looking pattern when looking at a person’s face. The researcher found that the experimental group would look everywhere except for the person’s eyes. The study made a lot of sense because I don’t like eye contact, but I will do it if I have to. I typically find myself looking at people’s teeth, and I know that’s random, but it’s not a judgemental thing; it’s something I’ve noticed as I progressed through college.
DB: I saw a Black woman on TikTok (@heavyonthedr) discuss the consequences of Black men being undiagnosed with autism. She discussed that Black men’s symptoms are viewed as a threat or attributed to their culture, which not only causes them to be disproportionately misdiagnosed and neglected but, in more severe cases, killed like Elijah McClain. From your point of view, how do you think you are socialized or perceived in society as a Black man with autism?
DM: The only people I’ve told about my diagnosis are you, one of my best friends I met a couple of years ago, my parents, and my old coaches from Maryland. Outside that circle, I never noticed how others would socialize or perceive me until recently. Before I knew about my diagnosis, it never really crossed my mind how others would perceive me in that sense, but it did cross my mind in the sense of how self-conscious I was in certain aspects, like how I dressed or how I presented myself to be more ‘normal.’ But in other cases, it never really bothered me how I would be perceived because I just saw what I was doing as usual or just an ordinary person with interests. I never really saw it as something to be ashamed of because it’s me; I’ve recently learned that I can’t be ashamed of myself. Even without my diagnosis, I have things that I love, so I can’t pull myself down for a person or people that I may not remember in a year. When people would point out certain behaviors before my diagnosis, I would be confused because I never really noticed them until I paid close attention to it. I would say, "Oh, now I see what they mean.” That’s the thing with being on the spectrum; social cues are not something we pick up on quickly, so when people point these things out, it doesn’t cross our mind as abnormal or people viewing us as different.
DB: Besides institutional racism and socioeconomic/racial disparities, what culture-specific reasons do you believe Black people are disproportionately undiagnosed with autism?
DM: In one of my African-American studies classes, we were reading a book called Fearing the Black Body by Sabrina Strings. In one of the chapters, the author talked about the healthcare system and its relationship with Black people regarding beauty standards and stuff like that. In the chapter, Sabrina Strings talks about how, often, the healthcare system bases its findings on white experiences and tries to apply them to Black spaces alongside racist and stereotypical ideas of Black people, for example, Black people having different types of bodies than white people. There were even instances where some surgeries and medical procedures were done without anesthesia or any other health precautions. All this sort of leads to this fear of people in power and those there to help us. While things can be perceived as different now, they really aren’t. There are still instances where many Black people’s concerns are being brushed off or not tended to. So, that aspect stuck out to me because of the text. In terms of the Black community itself, it just shows how we feel as though the behaviors of these autistic or ADHD children are disrespectful or disobedient or not following along with the rules the parent puts in place. This harshness on these Black children can stem back to how Black people navigate safety in society or even just ignorance. I don’t mean that negatively, but ignorance in a sense where parents don’t understand how vast or complex the human brain is—seeing how Black parents, especially older generations, weren’t educated on these things and how they imposed these harmful ideas onto children that don’t relate to the experiences their parents had. I just feel like brushing things off and not seeing from the child’s point of view throws off the relationship the parent should have with the child.
DB: What do you think we can do as a Black community to remove stigmas towards autism?
DM: The parents of this generation are doing a good job of researching these disorders and understanding their children. I keep up with this one Black family on TikTok; I can’t remember their names, but the child is autistic. The dad records his interactions with his child a lot. This past summer, the dad was going to summer camp and observing how his child interacted with the camp counselors and how his child’s behaviors displayed autism. This act of care and attentiveness shows that there are camp counselors who are aware of children with these disorders, and it also indicates that the parent is very mindful and sensitive to how their child is interacting. Taking the initiative is a big thing for me, and seeing how your behavior as a parent will significantly affect your child. Children are like sponges, they absorb everything. Being able to inform yourself of the complexities of children and neurodevelopmental disorders will be a huge stepping stone because if not, it leads to other issues with ableism and treating people with disorders and disabilities differently than people who are neurotypical or non-disabled. Just letting go of these preconceived notions surrounding disorders and disabilities and accepting the child for who they are, what they were born with, or what they even develop as their life progresses shows the steps of being a good parent.
DB: To end on a much lighter note, since planting is an integral aspect of your life and identity, where do you plan to take this hobby if you have one?
DM: Well, one, buy more plants, but also continue sharing my love for things I want people to have access to. You know me, I don’t like sharing everything with people, but sharing my plants is a stepping stone for me and also just a way to let people into my life. I’m definitely working on that now. We talked about this before; I’ve been reading a book called Tao Te Ching, which is a book on harmony, Daoism, and being able to accept things for what they are instead of trying to force things in your life that you should just let flow naturally; let the flow of life happen naturally instead of forcing things to happen on your own accord. Allowing myself to let things flow in my life helps me connect to others on a deeper level that goes past superficial means.
