My name is Julie and I am 25 years old. I live in Liverpool, Texas; but I grew up living in Santa Fe, Texas. Growing up my mom didn’t tell me of my diagnoses because she didn’t want anyone to put me in a box and for me to feel less than. So, I grew up struggling to do the basics like communication and activities where I would have to use hand eye coordination and gross motor skills. I fell behind most of my peers and I would find myself feeling overwhelmed and over stimulated. When I was 18 years of age, I was going through depression where mentally I felt like a monster due to my sensory meltdowns becoming so bad that I could not handle even going to the grocery store alone. I told my mom that I wanted to be tested for Autism because I felt like that diagnosis could explain basically my whole life.
She sat me down and told me that when I was born that I was born with an extra chromosome and that I have a chromosome disorder. She also told me that later I was then diagnosed to have both Sensory Processing Disorder (SPD) and Autism (ASD). At first doctors told my mom that they believed that I was MR (mentally retarded) due to me not being verbal. I didn’t start talking full sentences and full conversations until junior high and high school. People just called me shy. My mom fought against the school district and she won. She told them that I was capable to achieve so much more and for them not to put me in special education. So, from kindergarten on up to high school I took regular and even advanced classes. Doctors then realized that I was not MR and so then they diagnosed me with Asperger’s syndrome which today it is now considered Autism all together. Asperger’s simply meant that I was “higher functioning”, but I prefer to use the term “more independent and needs little assistance”.
My diagnoses were never put into my medical records or files due to my mom not wanting it to be in my records when I was diagnosed. She believed that it would make my life so much harder. What she didn’t realize was that by not having it in my records that I am actually autistic, it has actually made my life so much harder. I cannot be protected by ADA because my disability is not in my record; and as an adult who is looking for a job it is easy to be rejected because I can’t communicate as well as most. There have also been so many times when I have been abused or taken advantage of in a workspace environment and I could not do anything about it.
Now I am trying to get a diagnosis as an adult. It is so hard to find a doctor who will diagnose an adult with Autism because most of the tests or requirements have only been done on children. What most people don’t understand is that autistic children grow up and become autistic adults. I wish that there were more resources for adults with autism. I wish there were clinics and doctors who would realize the need that there are many adults who go misdiagnosed as having mental illness but in reality they are just autistic.
My autistic meltdowns are so bad as an adult and especially when I was a child; but the difference is that I am an adult and I can’t just fall to the floor and scream or hit myself in public like when I was a child. When I was a child I could meltdown and people would just think I was having a “temper tantrum.” I never learned how to regulate myself enough to calm down. I wish there were sensory centers where adults could go to take a break from the crazy chaotic world. A place that is safe for adults who need to meltdown but in a healthy way.
I want to create a sensory center for adults with disabilities such as Autism. I want to create a place where people like me can learn how to communicate better verbally, perhaps learn how to communicate for an interview or learn skills that will help us become more independent. I want to create jobs for people with disabilities. I want to inspire others to reach their dreams.
A funny story I would like to share is that when I was young, I would often repeat things from cartoons and tv shows. My favorite cartoon was Winnie the Pooh and my favorite character was Tigger. I remember one time someone asked me if I had brothers and sisters and I started to jump up and down and I said, “woo hoo hoo hoo! I’m Tigger and I’m the only one!” I remember the person just awkwardly laughing at me; but that was just how I thought it was best to answer their question. Little autistic Julie was quite adorable if I do say so myself.
I guess what most people would find surprising assuming I haven’t told them I am autistic is that I am. Most people just look at me from the outside. They see a young girl who can drive, talk, cook, read, go to college, take care of my physically disabled mom, and at times even be able to hold down a job. What they don’t see is how hard I have worked to get to where I am today. They don’t realize and see how some days are really a struggle and how hard it is not to run into traffic when I hear and see lights and sirens (because that is a negative sensory for me.) Most people don’t know how hard it was for me to graduate from high school and all those times that I was bullied. I just wanted to fit in; but what I didn’t realize at the time was that I was meant to stand out. Now at 25 years old I want to stand out and stand proud. I want my bullies to know that I am proud of who I am. I struggled a lot growing up and there are some days where I still do; but I wouldn’t change anything about myself.