At the time I was born there was not a lot known about how to treat hydrocephalus. The doctors did not have the shunt to make the correction when I was born. The path to finding answers started when I was six years old. In a New York City hospital it was thought I had infantile autism. At a hospital in New Jersey I had a neurological evaluation and they thought my behavior might be organic but the diagnosis was arrested hydrocephalus. As a child I had headaches in the front part of the brain. I was given medication for petit mal seizures and hyperactivity. I was turned down by the state of New Jersey for placement in a state facility for mental retardation. I ended up being placed in St. Coletta’s, a school for dealing with structure and learning difficulties at age seven. From age fifteen to age 53 I had various evaluations and there seemed to be a common thread in the results of all the tests:
Below level in non verbal functioning, withdrawn emotionally from my environment, limited knowledge of practical facts, poor coordination, limited socially, limited in coping with stress, impaired retention of information, below average ability in dealing with new tasks and making quick decisions.The diagnosis was depression NOS, anxiety NOS, and cognitive disorder NOS. The bottom line is missing nonverbal cues causes me to have ineffective behaviors.
As a black woman living in the United States, I am always mindful of what others think about me, and the assumptions they may make. As a black woman with autism, I am especially aware that colleagues often see me as an ‘angry black woman,’ even though my thoughts and behaviors are the opposite of this stereotype. (I prefer to label my ethnicity as black, not African American, because not all black people are African, and the majority are not American.)
Such cultural stereotypes make it particularly dangerous to be ‘autistic while black.’ Part of the reason people are quick to stereotype me is that there is no research on middle-aged black women with autism. read more
In the mid 90s I started to work with a therapist and I would like to share how my life changed over time in working with him.
When I started working with him I had been living in a house for many years with 3 other men due to my low wages and my job history. I felt like the care taker. I was constantly dealing with my Mother’s issues and late night calls. I struggled with minor depression due to unmet life goals like a better job history and having my own family. I had some challenges with my father due to his frustration with me and my ability to support myself. Every time I lost a job I would always get re-tested so I could figure out what was going on and make corrections. Employers would tell me things like I was too old, I walked too slow, I had poor people skills, and I would never amount to anything. Since college I had over 10 assessments done with no real answer.
As our work progressed I started to go to 12 step meetings to understand my family behavior around addiction. I also learned my role as a codependent as well. My relationship with my mother never really improved due to her own challenges in life. It took a long time for my relationship to improve with the rest of my family. I ended up working two jobs and trying to hold them at all costs. I left them eventually due to the effect on my mental health. As I became more assertive it did cause me some problems. After fourteen years I moved out of my house into my own apartment. I managed to date for the first time but found that I was expected to care for them financially which I could not and did not want to do. I attended a social skills program at a local university which opened my eyes on various mental illnesses like bipolar disorder. The goal of the program was to improve my skills but the instructors didn’t think I was suited for it after several months. In 2003 my therapist referred me to a specialist to do some detailed testing. The test showed high functioning Asbergers, non verbal disorder, ADHD type 2 inattentive, pervasive developmental disorder consistent with Asbergers syndrome, decreased occupational functioning due to limited social skills and vulnerability to anxiety and missing nonverbal cues contributing to ineffective behaviors. The testing also found I was best suited to jobs with high structure. In 2007 I had a social security hearing and was approved for disability. This finally put my put my disability on record so if I went back to work I would have protection.
The plan now was for me to do some volunteering to build positive experiences where I was appreciated. My hidden disability was defined and now I am working on my acceptance of how I move about the world.