A Bit About My Journey

As a child I was diagnosed with infantile autism. I was placed in an institution from the age of 5 to 16 for children with developmental disorders and various degrees of mental retardation. This institution was chosen for me by my parents and medical professionals, as the public school system at that time had no program in place for a child with my challenges. I was the most advanced child in the school and was used as a role model and helper for the staff since at this residential institution the majority of students were down syndrome.

Programs for my diagnosis were still being developed as the medical community learned more about autism. After graduating from this institution at 16 I completed public high school and then a bachelor’s degree. The professionals at the time recommended a vocational school for me but I made my own choice to take a different route.

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 in feelings of 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 11 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 job tasks that he could not. My boss had a special needs child and that influenced how he interacted with me at work.

Because my boss appreciated my skills in support of his role he had the power in the organization to advocate for my position when others would question my performance. Once my boss retired I lost his protection I had to leave the job under extreme stress, anxiety and misunderstanding of my work ethic and ability from my new supervisors.

During my years of 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 finally had an answer.

I started to search for rehabilitation for me as an adult. First stop was the Texas Department of Rehabilitation and their assessment of me is that I was too old and if I did get it by now I never would. Due to having 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. Due to years of heavy judgments from employers 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 rehab for adults. All the programs that are out there today are geared for children or young adults. When I ask do you know of any programs for adults the answer is always I am not aware of.

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 treatment programs there is a lack for coverage from insurance standpoint. All my treatments had to be paid for out of pocket.

I am termed high functioning and too old to qualify any programs to allow me to develop the skills to improve my life. As an adult know from experience that I need physical rehab, social skill management support and guidance to  identify the appropriate jobs for an adult with Asperger’s. I found much more information now and various chat groups but that does not address the full range of needs.  Today there seems to be more awareness in the New England are 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 struggle on how to explain myself to a prospective employer in an interview. Today with higher unemployment rate, age, competition I worry many employers may be hesitant to hire an older adult with Asperger’s. So to stay involved in life I volunteer at 3 organizations making a contribution to society and I 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 and support and understanding for adults with Aspergers especially in the workplace and I do what I can to advocate for that end. My question has over the past several years has been, “What happens when a child becomes an adult? The needs need 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 and their families.

I was called to share my experience, strength, and hope to others dealing with Asbergers issues. My hope is sharing my experience gives others hope.