I have NVLD. I have major struggles with it. I have always struggled immensely with math, sport hand eye coordination, bumping into things, taking notes, processing information, and also the social struggles. I’m also super tall so I’m more noticeable. I have been severely bullied over the years. Screamed at by teachers for not getting the work done. Punished for my continued crying in math when I’m so behind and looked at like I’m stupid. I also have extreme social anxiety. Never picked for sport. Never touch the ball. Laughed at. Always in the low level group of math. The class was 3/4/5/6. I was year 6 in the equivalent of year 2-3 and they would always have who was in what group on the board. I was invisible yet the most seen in pictures. It took 3 years of private tutoring where my maths tutor really understood how I processed information. Because of that and her adapting to the way I learn, I was able to learn, grasp and more importantly get over my fear of maths and feel validated and actually enjoy it.
I struggle making friends and knowing where my place is in a group. I can’t take notes down or know what matters and process. It looks like I’m not trying. That I’m doing nothing but really I’m trying the hardest and doing the most in my head. I can’t do origami. I never learned to ride a bike. I struggle in the shower, cooking etc. I am highly talented at writing. Reading. I am a screenwriter and that is what I try to focus on. Getting help was almost impossible during my school years as my IQ is above average, which is part of the disorder to be talented at verbal things. People brush it off as nothing. “Non verbal? She doesn’t speak?” No one understands. Only ASD is seemed as hard or validated. I with NVLD do not feel seen. Autism is not the only disorder out there, people need to know we are here.
I also have a chromosome duplication 26.3 which my Mum also has but I am by far more affected. I still struggle today but try to laugh it off. Try to forget. I have also experienced DV as a child/teen and was treated like a stupid person by my father. A sympathy friend who only sat with me because I was lonely was my only friend who my Dad would call over because he was busy working and had enough of me or the AFL was on and called G over. I felt like she was my babysitter. She was only like 3 months older than me.
He would get man flu or his “terrible migraines” and be in bed and not be a father. I struggle with self care and he knew that or was meant to. Plus social anxiety. He gave me 50 dollars for pizza, I was too anxious to order it. Didn’t in time so he asked for it back for his drugs from the pharmacy for his girlfriend to bring them by. I attempted at making a sandwich which was hard for me and even made him lunch. He didn’t touch it. He would tell me off for not wrapping the Christmas presents right.
At the moment I am struggling a lot. I left school and I’m looking to possibly do a writing course in the future. My social anxiety had gotten better but since the pandemic what improved went away. I struggle day to day and struggle maintaining a routine. I am going to apply for an assistance dog. Plus hoping to do some Occupational therapy soon. I finally got the NDIS and hope it can help me finally. When I found out Chris Rock was diagnosed I was finally looking forward to someone in the spotlight to help get us with NVLD out there. To help getting us seen. Plus hopefully we get in the DSM soon. I really hope Chris does more for people with NVLD because it gets harder everyday. NVLD gets harder when it’s not seen or heard of like other disabilities. At school I was always the “stupid” kid. No explanation for why I was the way I was. But for other kids, they weren’t stupid. If they acted like me, well at least people knew why. They knew they had a disability. They knew they had ASD and that’s why they act like that or struggle with that. For me there was no explanation. The amount of photos from school I look back at and see a body but not a soul in the photos. I was not present. I was scared, frightened. To be honest I’m not planning on getting a license because I have actual fears for my safety due to my NVLD. Mainly the not understanding non-verbal cues and the hand eye coordination. I hope when I am an adult NVLD will be way more known about. So It can prevent more, tall, shy, awkward girls in corners from hating themselves and feeling like they are less than human. To help prevent everyone with NVLD to feel how I have felt.
My name is Amy-Summer and I am 17, from Australia and I have NVLD. I would like to share my story.