Did My Autism Fly Under the Radar Because of My Race?

I dread emergency room visits. I loathe clinic visits. There are many situations in which I go “non-verbal”  or even “semi-verbal.” Usually these situations are high stress, and very demanding of me and my remaining “spoons” for the day. When I first decided I wanted to seek diagnosis for autism, everyone refused to give me the exact diagnostic code that was needed. I never “looked” or “seemed” autistic. Many minorities lack the funds to seek treatment, or may live in areas where proper healthcare is not accessible. Then there’s the other thing that exists: the pure disbelief that someone of color could be disabled.

My mother never took me to see a regular pediatrician. I feel this is how my autism flew right under the radar. If we ever got sick, we went to the emergency room where treatment can’t be denied due to her being unable to pay. At some point I started receiving government medical insurance. I remember seeing specialist after specialist. I underwent CAT scans, EEGs for “involuntary movements.” Tests always came back negative because I was just voluntarily stimming, and not sick.  Even though no one could ever find out what was “wrong” with me, the signs were always there.

Growing up, I lived in the “ghetto” for most of my life. I saw some gruesome stuff. The kind of stuff that adults shouldn’t even have to see or experience. Yet, I was always unaffected.

When I was 7 years old, I remember being forced to give up my recess to eat my lunch. The lunch that I refused day after day, and no one knew why. I didn’t even know why, I just didn’t want it. It looked “weird,” it smelled “off,” it was too hard, it was too soft.  I had this relationship with food at home as well. I was always underweight and had stunted growth.

I struggled and still struggle with selective mutism. This caused me to always be picked on by teachers, children and later in life, employers. It’s not that I didn’t know how to talk, I just couldn’t psychologically.

Growing up I had an intense oral seeking tendency. This led to me eating crayons for years, as well as sucking a bottle until I was 8 years old.  I’m grateful that at some point that my elementary school intervened and provided me extra services such as speech therapy.  There were times where it seemed as if I had an educational plan in place, but it was unbeknownst to me. I had an English teacher tell the entire class that “no one will have a harder time in this class than me.” I still have no idea what that was supposed to mean. In gym class, I was always made to sit out when I felt completely fine.  My whole school career felt like a joke I was never in on.

Where I lived rock music wasn’t what people were listening to, but I was. None of my interests matched those around me. I clothed myself in Hot Topic from top to bottom. I began befriending those who had the same likes, the same feelings, and were outsiders like myself.  I had never felt so much like my true self as I did during that time. Others thought it was a phase, but it wasn’t. The straw that broke the camel’s back was the day I decided to get my hair shaved into a faux-hawk. I loved my new hairstyle, I loved my new confidence. Yet I was still sent off to a mental hospital at 16. I had been dealing with deep depression, anxiety and self-harm. I was under the impression that I was getting help for that.

When I arrived I was searched for anything that could be a risk to myself and others. I observed the nurses dispensing medications to the other teens and children.  I can’t deny that I felt a tiny bit of happiness being away from my family. That quickly diminished after the reality had set in. I was stuck in a place where I did not belong. A place where the showers were cold and limited to 20 seconds. A place where every right was a privilege to be earned by a point system. I was stuck in this place because I was just me. Most of the people there were admitted due to substance and alcohol abuse, which I had never taken part in.  The whole experience was frightening and irrelevant to my struggles. Although this hospital is now closed down due to unethical practices, the trauma from the experience remains.

As an adult I would seek diagnosis on so many different occasions and each time it was determined that I had issues with executive functioning, extreme sensory and social difficulties, among other things. The reports would say that my life is significantly affected by the characteristics of autism. Yet I left each time with another new psychological disorder attached to my name.

The same situation that has happened to thousands of people; the same denial. The dismissal.