The Challenges I Faced in Life Being an Adult with Asperger's

This is a follow up to "Being a Successful College Graduate with an Autism Spectrum Disorder". This explains the difficult road that I had gone through in my adulthood to get to where I am now.

I would love to tell you that it is a very challenging world out there for Adults with Asperger's.

Well, I graduated from Pilgirm High School in Warwick, RI back in 1997 with honors. I did great in school and was fully mainstreamed in college prep programs. However, I had some difficulties when I entered adulthood. I entered the Community College of Rhode Island for the first time back in 1997. I went there so that I can take a a couple of courses that will allow me to go into a four year program in the medical field.

But when I got there, they told me because of my disability, that I could not do it. They even "regressed" my courses, even though I passed the placement tests (and having college prep courses). I also needed a job to help pay for school, so I worked as a cashier/ customer service at a Wal-Mart. Not a good job for someone with an Autism Specturm Disorder. Though I managed to survive a whole year, but I had trouble with the busy environment. Plus, I was taken advantage of when I was forced to work all crazy hours of overtime (but yet no real overtime pay).

The only good thing about that job was this how I knew what my challenges were. I developed depression and my social anxiety went up the roof, so I quit and just went back to CCRI. However, because of what happened the year before, I just felt all I was good at was my art. So I had taken writing course, drawing course, an acting course, and Western Civilization. I passed the semester with a 3.0 G.P.A. However, I felt that this was not my passion. I did not want to waste money or time in school, but I could not work either. Except this is how my life got twisted upside down. My parents, especially my mom had told me when i was 18 that I was to either go to school or work.

Keeping that in mind, yet running out of options, I panicked. When I told my dad that I had to quit school his answer was "your mom will be soo angry." When I told my mom, I had a nervous breakdown. I was afriad that I would have disappointed her and the she would be angry. Instead she was understanding. She had called an Autism Center and I saw a counselor at the Groden Center.

It was the counselor at Groden that changed my diagnosis from Autism to Asperger's syndrome. I ended up on social security to help me survive financially and medically.

The counselor was good, but she had made the biggest mistake in my life. She had convinced my mother and I that I should go into Groden's day program for autistic adults, called the Cove Center. I only wanted something temporarily that would get me a full time job and back into school. Somewhere I could just sit with a career counselor and figure out my strengths, weakness, talents, and other abilities that will allow me to have a successful career.

My weaknesses include severe sensory issues that prevet me from working in certain environments, social and non-verbal cue issues that prevent me from understanding the needs of a person, and I need a slow paced work environment. I also needed transportation, as I did not feel comfortable in learning to take the buses. I was even hoping that it could lead me to go back to school. Boy was I wrong. I was placed in Perspectives at first, while I waited to be placed at Cove Center, where I eventually was at until I left in 2009. It was okay, but I felt it was not good for my functional level. Then I got into Cove. It was not a good program for me at all.

Cove's programs are mostly tailored to adults on the spectrum that also have Intellectual disabilities and could not provide me with what I needed. It was good for most of the people who are not as higher functioning as I am, but it was not good me. I was placed in units and/or van rides with individuals who were more much more lower functioning.Even the ones who were higher functioning had much more challenges that I did.

Job wise, it did not provide me with jobs or anything that would help me at all. I was told the reason was because most of the programs under the developmental disability agencies mostly deal with clientele who are not as functional as I am. Even worse, I was placed into a "group home" residence. Though I had all the skills to live independently and was waiting for section 8 apartments, but my "team" convinced my mother and I that I should be in one.

It was a duplex, where I had my own side with my own kitchen, bedroom and everything. On the other side, were two men who were more "lower functioning" than I was. They had classic Autism, mild to moderate intellectual disabilities, and severe behavioral issues. I had to deal with a lot of their behaviors, which included teasing. I was told that I would not have any contact with them and that if I needed to go somewhere, that I would go alone.

That was not the case. In order for me to go out, I had to do it with one of them. Another problem with this set up was that though I was promised that I would have complete control over everything including my health and life, that was not the case. I had things controlled by them that I did indendently when I lived with my mother.

Socially, though I related better with the staff because I enjoyed adult-like conversations about politics, and anything. I However, I was not allowed to be their friend, which made me feel isolated. Being the only one with Asperger's and the most highest functioning, I knew Cove was not for me. I also felt misunderstood because the problems that I did have were either ignored or thought of as "only for attention". I could not tolerate it anymore.

I felt so helpless and started questioning my abilities so much, that I ended up having a nervous breakdown in 2007. But then a light shined in my direction. A fellow staff member who became my friend (regardless if Cove liked it or not) had told me that I did not need that place any more. She even convinced me that I should go back to school. It had taken me a while to be able to get the confidence to do so, but something happened which led me to get my gears going.  I had gotten very sick and had to have an operation to save my life. I had my enitre colon removed due to a total colectomy because the colon had died. That was my wake up call.

So I decided to take "back my life" from those challenges and utilize my abilities  for suucess. On my own, I knew I wanted that medical career, but had the social difficulties. After months, I figured that I could go back to CCRI and work in a medical laboratory. I met with the program director of the Clinical Laboratory/ Histotechnology Department. She said that I would do great with the histotechnology because I can utilize my great skills of medical knowledge and yet, did not have to work with patients. I also had learned to take the regular city buses, so that I would not have to depend on staff for anything and be completely independent. I left the Cove day program in 2009, went back to CCRI full time. I had even signed up for a bunch of section 8 apartments. So in the beginning of 2010, I finally left the finally Cove Center placement, the residence and moved out on my own.

Three years after starting school, I have made a positive change. School has given what those day programs could not: taking all my strenghts, weakness, and abilities and applying them to a successful career and life. I have even developed new skills and confidence ones that I though I never would achieve. Yes it has been a very long road of trials and tribulations, but at least I am now finally on the road I should have taken, the "Road to Success".

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Dana Fabrizio June 24, 2012 at 04:17 PM
Maya, thank you so much for sharing your story. I am so happy that you used your own intuition to know that you were not being served in a manner that would allow you to reach your fullest potential. Today, schools are much more geared towards student centered planning in terms of academic and career choices for individuals with differentiated abilities. You are an inspiration to others and I hope that you can share that success story with others that have to make choices as they enter adulthood. I will look forward to reading more of your posts describing your well deserved success!!!
Maya Lincoln June 25, 2012 at 02:12 PM
Thank you Dana for your kind words. It has been a very rough road, but I am very content that I am in life where I should be. I love to talk about my story and hope that others can be helped by it. I am very glad that I am able to help others.
Suzanne Arena June 28, 2012 at 07:05 AM
Inspiring Maya. When people connect, they heal and your story will touch many. I will be sure to share on my FaceBook. You are the type of Key Note Speaker that should go before Teachers, School Administration and teach them! Good luck with all your endeavors.
Maya Lincoln June 28, 2012 at 11:57 AM
Thank you Suzanne for your support. I am actually planning on doing some speaking in the future. I feel that people need to be aware that people with ASD's can accomplish anything, no matter what the challenges. We all have amazing abilities and I have even seen many lower functioning individuals with amazing talents, especially in the arts. I feel that with awareness, people with hopefully see all individuals with ASD's as the amazing people that they are.


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