Regressive Autism: You're Not Crazy or Alone
Childhood Disintegrative Disorder.
What an awful name, yet accurate name that describes an awful, yet accurate experience.
“You saw it all along even when others didn’t”, said my husband in a surprised and sad manner.
I guess that’s what they called mama intuition.
I didn’t know what was happening, I just knew I was watching my little boy disappear in many ways. When others thought it was just a phase, it wasn’t as bad as it was, I was being overly emotional or enabling my child I knew.
I knew and now that my husband saw it on the videos he knew too.
Every so often I’ll go to google trying to read about others who had a similar experience of watching their child lose abilities and connection.
It wasn’t until this week that I found something that has helped me feel like I’m not crazy or so alone in all of this. It’s a disorder that’s no longer a term used called, “Childhood Disintegrative Disorder”. They now refer to this disorder as "Regressive Autism".
According to my google search, signs of this disorder usually show around ages 3 to 4 and it was when our son turned 3 that things started to “disintegrate”or "regress" in ways. Now, I knew before this time that my son had something wrong. His development was not 100% normal. He crawled and walked within normal time, but was delayed in speech and other motor skills, showing other signs of autism. However, when he was 2 he started using a fork and spoon, started talking and was growing so much in speech, loved to play with his stuffed animals and games on my phone, and sat so well for his therapists. When he was 3 he knew his alphabet, his name, and did animal sounds.
Then that all changed. He still talks but it’s not the same. His words aren’t to engage like before but only communicate a need (which, don’t get me wrong we are so happy he can communicate most of his needs). He no longer wants to know people's names at the store, ask what something is, or make animal sounds. Sitting is now difficult but has improved with medication. After months of therapy and work at school, he’s now using a fork and spoon again. He doesn’t play with toys or even games on the phone anymore, rarely wants to read a book, but now seeks out constant sensory input. He makes noises and uncontrollably odd movements with his body at times. But we love him just the same if not more than we always have.
Maybe you’ve experienced something similar to me. That’s why I want to share what I’ve learned and experienced because this can feel so alone and so confusing. Dear friend, you’re not crazy and you’re not alone. Your experience and heartache is real. Now, don't you give up the fight and when you run out of strength, which you will, just remember Jesus never does.