An Unexpected Autistic

I am unexpected. Whenever I enter any space, my presence, my very being, is unexpected. No one expected for my medium brown melanated skin to be part of the pale sea of musicians as I grace the concert hall stage with my violin. And yet, there I was, sitting in a slightly crouched, yet confident position as a first violinist in the orchestra, ready to paint the hall with the melodious lines of Tchaikovsky. My crouched position as a violinist was also unexpected because violinists are supposed to sit tall, but due to my cerebral palsy, sitting tall was not an option. But probably the most unexpected is when I utter the words, “I am autistic.” Those words defy expectations, but it is not the main source of my unexpectedness. The main source of my unexpectedness lies within my life itself, not in labels or the various identities I hold, but in my very conception of the start of my life.

When I was born, everything went as expected. I was delivered as a full-term baby that let the world know my sound and presence when the doctor gently slapped my bottom. Yet, within this normal delivery hid something unexpected. Instead of being surrounded by my family, only a team of doctors and my mother surrounded me. My father and my older siblings were a continent away in Nigeria, while my mother and I were in London. My parents never expected for that separation to occur during my birth, but other forces intervened.

For a long time, my parents wanted a third child, but were met with severe birth complications that lasted for a decade with no new child in sight. When my mother became pregnant with me, she sought out spiritual guidance to ensure I survive my birth. Unfortunately for her, a local Nigerian prophet told my mother that the only way for me to be spared from death is if I was not born in Nigeria and was to never return to Nigeria. Upon hearing this and wanting my survival, my parents sought out visas to the United Kingdom for my entire family, but only my mother (pregnant with me) was able to obtain a visa.

For my mother, spiritual guidance is how she framed her worldview. To her, the issue of my survival was a spiritual one, and not a medical one. Her worldview ended up serving as my first insight into what being disabled meant as I begin to understand disability through this spiritual perspective. This perspective, often deemed the spiritual model of disability, postulates disability as a consequence of injustice(s) humans have done to upset spiritual or ancestral forces.¹ For certain aspects of my story, this model makes sense and serves as a possible start to my constant unexpectedness.

For the first 3 months of my life, I appeared to be like any other newborn, calm, poopy, and alive. I was what my parents always wanted. However, my father, who was still in Nigeria, had not been able to lay his eyes on or hold his calm and poopy child. Conflicted, my mom made the decision to leave London and return to Nigeria with me when I was 3 months old. According to my mom, my demeanor changed the moment our plane left London. My mom used to breastfeed me, but once on the plane, I stopped taking breastmilk (despite my mom's numerous attempts) and never took breastmilk ever again. In that moment, my mom felt that something changed within me, but she could not figure it out at that time.

It was not until I was 2 years or so when my parents became concerned with my inability to walk, or even stand up by myself. It was like my legs and brain could not connect, even though I had all the nerves and muscles to connect the two. This concern prompted my parents to take me to doctors all around Lagos, Nigeria, hoping for some clue. But the lack of a strong medical infrastructure with very scarce access to various diagnostic methods such as MRI machines made it difficult for doctors to figure out what was going on with me. Frustrated, my mother turned to her other form of medicine, one that she believes is much stronger than modern medicine—her Yoruba Christian Faith.

My mom took me to the local head pastor of The Apostolic Church in Lagos, to plead my case and try to figure out what was happening to me. Through prayer, the prophet revealed that my inability to walk was spiritual and due in part to my return to Nigeria, and as such, I needed to leave Nigeria if I was to ever return to normalcy, or even stay alive. Without hesitation, my parents filed for visas for me and my family to leave Nigeria and find spiritual refuge in America. Again, only my mother and I were granted visas. Owing to the scarcity of visas for Nigerians to immigrate to America, the rest of my family (my older siblings and father) could not join my mother and I until years later.

We arrived in Houston, Texas, where I was diagnosed with cerebral palsy by doctors at Texas Children's Hospital. Nonetheless, my mother still adhered to her Yoruba faith in an effort to normalize me. My childhood was filled with monthly, sometimes weekly, visits to local pastors and prophets, who all presented various plans on how to make me whole again: to make me the normal child every parent wants. It was not just prayers that I was subjected to, but drinking anointed olive oil, special anointed prayer water, bathing at specific times during the day, and even some fasting (although my version was very mild given my age).

This was oftentimes isolating, because my siblings never had to follow this regime as extensively as I did. At night vigils (late night prayer services that often go past 2 am), I was a common fixture and was constantly called to the altar for special healing prayer. It felt like all around Houston, everyone knew who I was and knew my story. This is what I grew up in, a model of disability that determined how I saw myself and how others in my community saw me. Under this model, I was disabled because my mother did not adhere to God's direction early on in my childhood when she brought me back to Nigeria despite the prophet warning her of my possible death. Fortunately for everyone, my return to Nigeria did not bring forth death, but it did bring forth a disabled life.

Though my mom took me to prophets and pastors with the goal of curing my cerebral palsy, she implicitly and sometimes explicitly asked for prayers and guidance to also cure me of my autistic behavior and sadness, which she, unaware of my autism, described as damaging shyness and quietness.

My autism was not recognized until late adolescence; or more specifically, senior year of high school, when my longstanding Ghanaian American physician formally diagnosed me with “high-functioning autism” (a term with ableist connotations²). Deep down, I knew I had autism, but I had spent years hearing special education specialists and therapists tell me, “It is not possible for females or black people to have autism,” or my personal favorite, “you do not act like this boy with autism, or have stereotypical mannerisms of autism (like flapping of hands).”

I battled depression all throughout my childhood. Partially my depression was due to the ableism from having cerebral palsy (a visible disability), but a large part came from the difficulty of wanting to relate and interact with my peers and not having that interest reciprocated because of my lack of awareness of verbal and nonverbal social cues.

Today, as I reflect at my childhood experiences, I can understand why my autism diagnosis took so long. Throughout my childhood, I went through a spate of different and incorrect diagnoses from school psychologists who could not see autism in me, but instead saw “emotional disturbance” and “selective mutism.” Some researchers have argued that such misdiagnosis before an autism diagnosis may be due to racial³ and gender bias⁴ evident in gold-standard autism diagnostic and assessment materials. They further suggest that this bias is one of the mechanisms responsible for underdiagnosis and misdiagnosis in Black and Hispanic children. This bias played a part in my late diagnosis of autism, but that is not the full picture for me.

Although it is true that better understanding of racial and gender bias in autism assessments and diagnostic materials may have possibly allowed for early recognition of my autism,⁵ it is important to remember that my story is not complete without recognizing another intersection of my identity. Growing up in a religious Yoruba household contributed to my late diagnosis of autism because my family and others in my community were not aware of autism signs. My lack of eye contact was not a problem because direct eye contact with those older than you is a cultural taboo in Nigeria. My sociocommunicative differences did not pose to be a problem because I was not disruptive at home, in class, or in church.

I was just seen as a quiet introverted shy child whose lack of true friends was due to my quietness. My cerebral palsy was easier to catch early on, because not walking was a more disruptive and visible signal to my parents than my decreased sociocommunicative abilities. The complexity of immigrating from a country where autism is not well known and into a new country where autism is known may have contributed to this, but even in America, systemic racism meant that my parents (and other Nigerian immigrants) were not exposed to an appropriate level of autism awareness.

I had a mother who could not see autism in me because all she saw was spiritual disturbances that could be expelled through God. To be fair, my mom was (and is) an amazing person who did her best to take care of me in the ways she knew how. She adhered to the treatments my team of orthopedic doctors and physical therapists set out for my cerebral palsy. She took me to my weekly physical therapy appointments, the various monthly appointments at Shriners Hospital, and stayed with me for my surgeries. She did all that and more, but still stuck to her Yoruba Christian faith because for her, it was only God that would deliver me from my disabled life.

But because no one saw autism in me, I spent more unnecessary years emotionally and mentally struggling with myself because I felt so alone. I felt out of place wherever I was, because I wanted to connect with others, but my efforts to achieve that connection oftentimes fell short. Those years of struggle could have been turned into years of self-love, social connection, and acceptance, if someone had recognized autism in me early on.

Because of the intersection of my identities, my autism was hidden. But it does not have to be that way for others. As a field, we need to do better to capture all aspects of individuals' intersections of identity. Growing up under the spiritual model of disability helped me understand how better to reach those within Black and African immigrant communities, not only to aid in recognizing autism, but also to promote more positive perspectives of autism and improved quality of life.

We need to focus on increasing measures of awareness in these communities, educating about how autism can present outside of the stereotypical interpretations of symptoms. At the same time, we must be mindful in relating to these communities so as to not alienate them and to respect their way of life and beliefs. Although I do not have all the answers on the steps we must take as a field to address these issues, I am embarking on this journey as I start my graduate studies in clinical psychology and hope others join me as well.