Once I completed college I thought I had overcome all my barriers, but instead I found myself at the start of a 25-year struggle and journey. That journey was a wake-up call for me on the lack of information, support, and understanding for myself, my family, employers, and in many social areas of the needs of adults with Aspergers. I spent many years feeling failure, isolation and frustration.
The first 10 years out of college I could not hold a customer service job for an extended period of time. Every 6 months I was getting fired or laid off and during those years I had 15 different jobs. I ended up in a low paying hotel job for over 14 years. I worked long hours that included every weekend. What sustained me at this job was having a boss that recognized that I could do the tasks that he could not. My boss had a special needs child and that influenced how he interacted with me at work.
My boss appreciated my skills in support of his role and he had the power in the organization to advocate for my position when others would question my performance. When my boss retired I lost his protection and I had to leave the job under extreme stress, anxiety and misunderstanding of my work ethic and ability from my new supervisors.
During the years of my job changes, each time I got laid off I went to professionals for a diagnosis for help and answers on what was happening and how I can make changes to improve my career. In 2005 my therapist encouraged me to undergo a detailed neuropsychological evaluation. I was diagnosed with Pervasive Developmental Disorder, consistent with Asperger’s Syndrome, Non Verbal Disorder. After this diagnosis I felt I finally had an answer to many years of disappointments and frustration. My family was finally relieved that we had an answer.
I started to search for rehabilitation as an adult. First stop was the Texas Department of Rehabilitation. Their assessment was I was too old and if I didn’t get it by now I never would. Since I have a college degree I was denied services for re-training for a new job. I was placed in a social skills class through the agency but they determined I was not suited for the program. I decided to apply for social security disability to give me some form of protection from discrimination if I returned to work or to assist in my rehab needs. It took three years to be granted disability with the help of a lawyer.
I was granted disability from some of the side effects of Asperger’s, which for me is anxiety and depression. Once again I started to look at the various rehab programs in the community for adult rehab. I found programs that were geared for children or young adults, not for adults. I began to implement my own program that consisted of engaging the help of various health professionals on a hit or miss basis. The modalities I tried were numerous and I was thankful for the therapist I found to help guide me and to ask questions on social concerns. In addition to the lack of adult treatment programs there is a lack insurance coverage. All my treatments had to be paid for out of pocket.
I am classified as high functioning and too old to qualify for any programs to develop the skills to improve my life. As an adult I know from experience that I need physical rehab, social skills management support and guidance to identify appropriate jobs for me. I am finding much more information now on the internet and in various chat groups, but that does not address the full range of my needs. Today there seems to be more awareness in the New England area compared to Texas. I am considering looking at a short-term training program with the new knowledge I have. But after the training is completed, I think I will still struggle with how to explain myself to a prospective employer in an interview. Today with age competition I worry many employers may be hesitant to hire an older adult with Asperger’s. So to stay involved and active I volunteer at 3 organizations where I can make a contribution to society and am valued and appreciated.
In my personal experience the schools I attended were a lot more flexible in meeting my special needs than many of the organizations I have worked for. I am a living example of the need for more programs, support and understanding for adults with Aspergers, especially in the workplace and I do what I can to advocate for that end. My question over the years has been, “What happens when a child becomes an adult?” An individual needs has to be addressed over a lifetime and not stop at age 21. I hope that my experience and what I have learned about living with Aspergers can be helpful to others.
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.)