Understanding
Okur-Chung Neurodevelopmental Syndrome
Autism Diagnosis
by Amber Reynolds
Mamas, always listen to your heart, your gut, your instinct. Since Harper was a couple months old, I knew something wasn’t quite right. People just said, she’s fine, she’s just a little behind, and to stop reading baby books.
At her one year appointment, her pediatrician finally decided to send us to some specialists to figure out why Harper was delayed. After seeing a neurologist, geneticist, and getting MRI’s, EEG’s, and blood work galore all they could tell us was that Harper’s brain was significantly underdeveloped and that they knew whatever she had was due to genetics. At the age of 2, I still felt in my heart it was more than genetics, of a diagnosis we didn’t know yet, and I still felt that she had autism. I had read books, watched videos, and researched galore. I went and saw a specialist and she told me the same answer, it was just genetics, and she needed to change her diet to Gluten and Dairy free.
Harper was then on this diet for years, we saw a few changes in her behavior, but nothing dramatic. She still stimmed, flapped her hands, was nonverbal, tip toe walked, had sensory processing disorder, and wasn’t too keen on people hugging, or touching her. So a couple of years later I asked her Neurologist again, he still said nope, I can just tell she’s not autistic.
Shortly thereafter, we found out Harper’s genetic report came back that she had Okur-Chung Neurodevelopmental Syndrome. So I thought, okay, the two diseases must just have a lot of similarities, and Harper just has OCNDS. Well after learning more about OCNDS, and seeing that a lot of children ALSO had autism, I decided to go get a second opinion at a new neurologist. The doctor decided to do several different tests, which no one had ever tested Harper, they just looked at her and said she doesn’t have autism. (which I’m not sure how you can tell by looking at someone). SO after completing the Adolf, CARS, and ELS, and paperwork, they determined that Harper 100% has autism and is definitely on the spectrum. I cried at the appointment because I have ALWAYS known she had autism, and it was frustrating at the therapies and services she had missed over the years, or the services we had to pay out of pocket for not having a diagnosis at the time or a diagnosis that insurance wasn’t familiar with.
Mamas, always listen to your heart, your gut, your instinct. Since Harper was a couple months old, I knew something wasn’t quite right. People just said, she’s fine, she’s just a little behind, and to stop reading baby books.
At her one year appointment, her pediatrician finally decided to send us to some specialists to figure out why Harper was delayed. After seeing a neurologist, geneticist, and getting MRI’s, EEG’s, and blood work galore all they could tell us was that Harper’s brain was significantly underdeveloped and that they knew whatever she had was due to genetics. At the age of 2, I still felt in my heart it was more than genetics, of a diagnosis we didn’t know yet, and I still felt that she had autism. I had read books, watched videos, and researched galore. I went and saw a specialist and she told me the same answer, it was just genetics, and she needed to change her diet to Gluten and Dairy free.
Harper was then on this diet for years, we saw a few changes in her behavior, but nothing dramatic. She still stimmed, flapped her hands, was nonverbal, tip toe walked, had sensory processing disorder, and wasn’t too keen on people hugging, or touching her. So a couple of years later I asked her Neurologist again, he still said nope, I can just tell she’s not autistic.
Shortly thereafter, we found out Harper’s genetic report came back that she had Okur-Chung Neurodevelopmental Syndrome. So I thought, okay, the two diseases must just have a lot of similarities, and Harper just has OCNDS. Well after learning more about OCNDS, and seeing that a lot of children ALSO had autism, I decided to go get a second opinion at a new neurologist. The doctor decided to do several different tests, which no one had ever tested Harper, they just looked at her and said she doesn’t have autism. (which I’m not sure how you can tell by looking at someone). SO after completing the Adolf, CARS, and ELS, and paperwork, they determined that Harper 100% has autism and is definitely on the spectrum. I cried at the appointment because I have ALWAYS known she had autism, and it was frustrating at the therapies and services she had missed over the years, or the services we had to pay out of pocket for not having a diagnosis at the time or a diagnosis that insurance wasn’t familiar with.
So Mamas and Dads if you feel that your child “might” have autism, it doesn’t hurt to go get testing done. The services and therapies that are offered and covered could significantly help our kiddos.