by Erin Ferrier, Disability Action Center NEW
Have you been newly diagnosed with a disability?
You have rights! Do you know what these rights are?
A Guide to Disability Rights Laws
The road that led to these rights was long and grueling and there is still much to be done. Sure, people with disabilities have rights, but that doesn’t mean those rights are going to be upheld in the many interactions that occur throughout a person’s lifetime. Learning that you have a disability is only one step in a very long and potentially difficult journey towards finding self-acceptance, learning self-advocacy, and developing self-determination.
I was born with an invisible disability. This invisible disability was not determined until I was 36 years old. Up until that point, I knew I was different. I felt broken. I didn’t understand why I struggled like I did, why I couldn’t be the way others wanted me to be, why the world was such a confusing place. I learned early in my life how to mask. This was one of many survival strategies that I would develop as a way to cope. This masking allowed me to hide my struggles, but also prevented me from getting my needs met.
Autistic burnout is something I have struggled with my entire adult life. I have been told more than once by my doctor and counselor that my ongoing high stress levels are killing me. Due to my masking, you wouldn’t be able to tell this on the outside.
I have often received confusing looks from people when I tell them I am autistic and that I have been highly impaired my whole life.
“How can that be?”, they ask me. I am a teacher, a mother, I drive a car, I live independently, I am married, and I have completed 12 years of higher education and multiple degrees. How can that be?
Because it is. Just because I am highly impacted by my disability doesn’t mean I can’t achieve goals in my life.
So, I must be high functioning? Right?? Nope.
I may appear functional in certain situations, but not in others. I thrive in the world of academics, but I struggle with various aspects within academics. I am both a sensory seeker and a sensory avoider depending on the situation. Sometimes, my nervous system is so heightened due to overwhelming stress that I hide in a dark room with ear plugs.
I am considered a highly verbal person, but I struggle with communicating effectively with people who don’t understand how I communicate or why I do the things I do.
Autism is not my only disability. There are also all the coexisting conditions that I have. I have social anxiety and generalized anxiety disorder, and both can be debilitating. I also have Ehlers-Danlos Syndrome which has resulted in me having very unstable joints, chronic pain, Slipping Rib Syndrome, and having multiple surgeries to repair damage. I also I have dyscalculia (math learning disability); yet understanding science concepts and organizing data is easy for me. Complex-PTSD is something else that I struggle with.
All of this impacts my ability to function on a daily basis.
Asking for help and even realizing that you need help can be really hard. I learned about my disabilities after both my children were diagnosed on the Autism Spectrum. I started my journey with disability alone, confused, and overwhelmed. As an Independent Living Advocate, I want to make sure that others don’t have to go through what I did. DAC NEW is here to help. You are not alone!