Getting an Adult Autism Diagnosis as an African American Woman
At 24 and a half years old, I’ve been officially diagnosed as having autism spectrum disorder or ASD. I get to join the ranks of Steve Jobs, Albert Einstein, Mozart, Susan Boyle, Bill Gates (presumably) and more.
Can I say I’m surprised? A little. But I decided it would be best to talk about it now, as it may play a crucial role in my social and academic life in Nigeria for the Fulbright fellowship and at University of Oxford for graduate school. I had originally deleted a similar post out of shame and fear that the wrong people might find it, but as I got to know and love myself a little more over the past few months, I realized how little that actually matters. I am proud of the person I am today and the obstacles I have overcome with this disability — and I hope to spread awareness and understanding to others. Besides, I would also love to inspire other future Fulbrighters with disabilities to apply! Additionally, although everyone on the spectrum is different, I thought it might be useful to share some of my experiences and behaviors I’ve picked up about myself in hindsight.
I had originally decided to get tested for autism after doing several online screenings. I had my therapist do a short professional screening, and she discovered (not me — I knew) that I had a strong aversion to loud sounds, bright lights, and wearing certain fabric of clothing (jeans and leggings are the absolute worst, for example!) I then went to a specialist and underwent a battery of neuropsychological evaluations for a total of five hours over a span of two sessions. The evaluations tested my verbal and nonverbal reasoning, processing speed, and a few other mental health screenings that tested for depression, schizophrenia, anxiety and more. My parents were also interviewed to see what I was like as a child.
I scored mostly average to slightly above average on the majority of the tests. I also definitely have anxiety according to the BECK screening, which was completely unsurprising.
Additionally, I scored well below average in the social and nonverbal reasoning aspects of the test, but what surprised me is that it turns out my processing speed is incredibly below average. This means I’m simply not as “quick” as most people. I’ve noticed this in social settings as I have a hard time keeping up with the pace of conversations, and I often end up not saying anything at all as a result. It’s also been a big problem for me in tests, although I just assumed everyone struggled to finish their tests on time. It might be why I’m not doing so well on the math section of the GRE.
These days, autism is rated as mild, moderate or severe, with mild being the part of the spectrum that used to be called Asperger’s. To my surprise, my rating is considered moderate. Given how “normal” I sometimes appear to others, it means that I unfortunately do an impressive job of masking my condition in social situations. However, the examiner said since I am able to live and work on my own, I should consider myself to have mild autism.
My social life
The report said my social affect is very flat, meaning I often have a blank stare and do not utilize the extent of my vocabulary when talking. My parents had also told the administrator I sometimes had a hard time picking up on mood changes when growing up, and I honestly wouldn’t be surprised if I still do now. I also have a very rigid social life. For now, it means that I join meetup groups in my select interests (Bible study, running clubs and book clubs) and very rarely deviate outside of that friend group.
I have a pretty easy time making friends, but struggle to keep them. This has gone on since middle school, but I starkly remember horrible altercations I’ve had with friends, roommates, and teammates in college and in my early 20s.
What this means for me
Once again, everyone on the spectrum is different. But I wanted to highlight some of my experiences that are congruent with traits of people with autism:
1. I am more likely to be isolated by my peer group.
All my life I have felt different and awkward. I’ve never belonged in a clique or had a genuine group of friends growing up that lasted longer than a couple months. Of course, a lot of that may have simply been attributed to growing up in a military family, where being a tall black kid in Japan and moving every two years made things more difficult compared to other children. Nevertheless, in school, my main focus in life was track and field, and as an adult, my main focus has been on my research and career. I’ve been blessed to be very talented in both of those aspects of my life, but I admit it is sometimes at the expense of forming and keeping friends.
I still crave friendships and intimacy, but I have noticed others can often sense the “different-ness” in me, and distance themselves no matter how hard I try to act “normal.” However, it never stopped me from continuing to try. Recently I’ve joined several meetup groups and forced my introverted self to attend events in an attempt to practice my social skills, this time not to mask my symptoms, but to embrace them and be my authentic self. The results have fortunately been much better and I can finally say I am forming friendships I believe will actually last a lifetime.
2. I am more likely to be sexually and emotionally abused.
There have been several articles written about the bullying and isolation of people with autism, and as the “me too” movement has gained traction, so have the studies about the disproportionately high rates of sexual assault in the ASD community. Yet this isn’t news to predators. Predators are able to pinpoint the most vulnerable children, teens or adults, who for whatever reason have a hard time feeling comfortable in their own bodies and are less likely to stand up for themselves and speak out effectively. For example, some adults on the spectrum often resort to misplaced anger at others when trying to communicate feelings of real traumatic events — often scaring away the listener and making the survivor more at risk of victim blaming and other harmful tactics.
3. I probably hate going to your party or event, but I love being invited.
This hasn’t been an issue for me for the longest time, as I have simply not been invited to many events hosted by members of my peer groups. However, as I have been recently forming lasting friendships, I’ve been invited to significantly more parties and gatherings. I look at my younger siblings and notice that going to these events along with one-on-one interaction are the key to maintaining friendships, but I must admit, parties are hard. The music, laughter and conversations are way too loud, the lights are too bright (and don’t even get me started on the dreaded strobe lights!) and no matter how much I run the itinerary and guest-list with the host, there is always a change of plans or people at the event. Don’t get me wrong, I absolutely love being invited these days, as the pain from being shunned and left out in the past is fresh in my mind. Yet it is something that I will have to get used to, and I am fully aware that the stimuli is only going to be worse at events in Nigeria, so I might as well start to get used to it now.
4. Love me or hate me, I won’t have a clue.
This one has taken some deep reflection on my personal life and past friendships. I’m beginning to understand that not everyone in my life is my friend or good acquaintance. For the longest time, I’ve assumed that after meeting somebody once, we were on friendship terms. I would “ride hard” for people who wouldn’t do the same for me, and it would often stab me in the back when I need them most. Additionally, I noticed the trend to “ghost” or block people these days, without providing any explanation for why you’re leaving that person’s life. It’s extremely confusing to me and it would often take me months to realize that the person no longer wants to speak with me or simply doesn’t have time.
When dealing with individuals with autism, it is best to be upfront about why you’re upset with somebody, or why you feel you no longer want to communicate with them. Alternatively, it is extremely difficult for me to figure out if someone likes me or is even flirting with me. Again, it is best to be straightforward with this. I’ve noticed that being invited to events and being pulled aside to talk one-on-one often clues me in, but only sometimes, because I still often guess wrong.
5. I don’t need you to accept me, but it would be nice if you would.
Only a few months ago I was desperate for the approval and acceptance of others. All my life I’ve subconsciously mirrored other’s behaviors in an attempt to appear “normal” and more like them. However, as I continue to learn and grow, I realize I am only harming myself by doing so. I haven’t been taking the time to polish my unique talents. It wasn’t until very recently when I decided to truly stop caring about what people think of me and just be myself in every situation.
Nonetheless, as a verbal individual on the spectrum, I do feel it is my responsibility to spread awareness about autism to others and stand up for people who may not otherwise have a voice. In my experience, some therapists and aspiring clinicians are absolutely horrible in detecting and treating autism in adult women, and I hope to change that on my journey as a friend and through academia. For example, last month I gathered my friends and family to join me in a national walk to spread awareness for people with autism. We were able to raise over $400 for individuals and families with autism, and I was able to communicate more about myself with those closest to me. I also founded a group for adult women and minorities on the spectrum in order for us to support each other in various ways. It feels good to do my part to spread awareness and support others, and I hope you will consider doing the same.
The administrator mentioned that it may be useful for me to get special accommodation on tests at Oxford and my next school due to my anxiety and processing speed results. This will be a very interesting change, as I won’t have to take tests in a certain time limit or have nearly as many distractions as I’ve had in the past.
It makes me wonder how I was able to solidify a high GPA in college, be an elite athlete, secure kick ass jobs and get into the best university and fellowship in the world; it’s truly a blessing and the sky’s now the limit for what I can do now with an even playing field!
It also explains why applying to places has been my “thing” lately. It’s competitive and I love it. People with autism usually have a special interest in something, and this must be mine. This application cycle I’ll be applying to the Gates Cambridge Scholarship, Stanford’s Knight-Hennesy fellowship and grad school applications. This new “thing” of mine will come in handy as I progress more into my career as an aspiring University President, as applying to grants and such will be routine.
As an African American woman, I can fully attest to the research that claims late diagnosis is common in women, and even more common in African Americans. This is unfortunate because early intervention is the key to living a healthy and fulfilling life. Being diagnosed as an adult will come with a lot of challenges, but it has also already come with a lot of clarity. I find I’m able to understand myself better, and be kinder to myself when I struggle with minor social situations. I’m hoping the future will continue to bring more clarity and self-compassion.