Beyond Disintegration (@beyond.disintegration)

Because “we don’t know” should never be the answer to regression. #ChildhoodDisintegrativeDisorder #regression #MedicalResearch #parentadvocacy #profoundautism

Because “we don’t know” should never be the end of the conversation. #ChildhoodDisintegrativeDisorder #regression #MedicalResearch #parentadvocacy #profoundautism

Because “we don’t know” should never be the end of the conversation. #ChildhoodDisintegrativeDisorder #regression #MedicalResearch #parentadvocacy #profoundautism

Because “we don’t know” should never be the end of the conversation. #ChildhoodDisintegrativeDisorder #regression #MedicalResearch #parentadvocacy #profoundautism

Regression and research are two words that should go together, but rarely do. Regression research is decades behind, and families are the ones paying to catch it up. Beyond Disintegration exists to change that: funding research, connecting families, and pushing for answers when a child’s development catastrophically regresses. Because “we don’t know” should never be the end of the conversation. #ChildhoodDisintegrativeDisorder #regression #MedicalResearch #parentadvocacy #profoundautism

This is the story of our founder Soraya's son, Cassian, in her own words — a child who developed typically, then began to disappear piece by piece. Every test came back "reassuring." No answer ever came. Please read the published version on The Lancet — and share it. Willis S. "Chasing yesterday: a parent's reflection on developmental regression." Lancet Child Adolesc Health 2026; published online June 2, 2026. Read the full article on The Lancet → doi.org/10.1016/S2352-4642(26)00138-0 #ChildhoodDisintegrativeDisorder #CDD #DevelopmentalRegression #RareDisease #BeyondDisintegration

The Beyond Disintegration website is officially live. We invite you to join our community and learn more about our mission. for unexplained childhood regression. Click below to visit us today: www.beyonddisintegration.com

Meet Yvonne, one of the founding members of Beyond Disintegration and part of our Community and Parent Advocacy Team. Yvonne knows firsthand what families face when something is clearly wrong and no one is listening. That is exactly why she champions the voices of parents in our community, supporting families navigating CDD and unexplained regression so no one has to fight to be heard alone. If her story sounds like your family’s, you are not alone. Reach out. We are building this with you. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #regression #MedicalResearch #ParentAdvocacy @yvonn55

The families who started Beyond Disintegration watched our children disappear, and there was almost no research to tell us what was happening. CDD might be its own path to autism, driven by a different process than the autism that shows up without a child losing skills. That makes it one of the clearest windows into how varied the spectrum really is. Removing it from the manual does not simplify autism, it hides a clue we cannot afford to lose. With thanks to the researchers who made this case more than a decade ago: Pelphrey, K., and Westphal, A. (2012, April 3). In defense of childhood disintegrative disorder. The Transmitter (formerly Spectrum). https://www.thetransmitter.org/spectrum/in-defense-of-childhood-disintegrative-disorder/ #BeyondDisintegration #ChildhoodDisintegrativeDisorder #RareDisease #MedicalResearch #ParentAdvocacy

Meet Anna, one of the founding members of Beyond Disintegration and our Multilingual Outreach Coordinator. In this video, Anna shares Jordi’s regression and the long road to his childhood disintegrative disorder diagnosis. That is exactly why Beyond Disintegration exists, and why Anna leads our multilingual outreach so families can find community, information, and support in their own language. If Anna’s story sounds like your family’s, you are not alone. Reach out. We are building this with you. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #RareDisease #MedicalResearch #parentadvocacy

Three of us, one mission, two countries. The Beyond Disintegration team met today over video to talk through what comes next for our community. Building something from the ground up looks like this. A small group of people who care, across an ocean, figuring out how to show up for families navigating catastrophic developmental regression in childhood. More soon. We are just getting started. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #AutismRegression #ChildhoodRegression #medicalmystery

Meet our founder. Beyond Disintegration was started by a group of mothers whose children lived through something most people have never heard of: catastrophic, unexplained developmental regression. Lost language. Lost skills. Lost milestones, sometimes overnight. We exist to change what that looks like for the next family. More awareness. More research. More language to describe what’s happening to our kids. Follow along. This is just the beginning. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #RareDisease #MedicalResearch #ParentAdvocacy

Catastrophic developmental regression doesn’t only affect parents. It ripples through grandparents, siblings, extended family, and entire communities who are left searching for answers, support, and hope. We share these stories because families living through childhood regression deserve to be seen, heard, and researched. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #CDD #ChildhoodRegression #AutismRegression

People hear “autism spectrum” and assume every experience exists somewhere along the same line. But what happened to Emmett was not a variation of personality, communication style, or support needs. It was loss. He lost language, skills, connection, regulation, and pieces of himself in a profound regression that changed every part of his life. That experience deserves to be seen, studied, and understood for what it is. When Childhood Disintegrative Disorder was folded into the autism spectrum in the DSM-5, families like ours lost more than a diagnosis. Researchers lost the ability to clearly identify and study these children as a distinct population. And when something cannot be properly named, categorized, or tracked, it becomes easier for it to disappear from research, funding, and public understanding. Calling that erasure is a call for honesty, nuance, and recognition of children whose stories do not fit neatly into the broader narrative people have come to understand about autism. These children exist. Their regression is real. Their families are living it every day. And they deserve more than being absorbed into a category too broad to fully capture what happened to them. #regression #childhooddisintegrativedisorder #beyonddisintegration #medicalresearch #childhoodregression @Alexis “All Access” Wilson

This is Emmett. He was four and a half when he stopped talking. When the child we knew — the one you see at the top of this screen — was just gone overnight. Every test came back normal. No stroke. No brain tumor. No metabolic disorder, structural abnormality, or genetic condition. Nothing to explain why a typically developing child regresses overnight into a complex communicator who self-injures. He was diagnosed with autism. And that’s where the road ends — because autism research doesn’t fund the why behind catastrophic developmental regression. It gets filed away. Parents get told to move forward. We can’t move forward without answers. Childhood Disintegrative Disorder (CDD) affects a tiny percentage of autistic children, which means it gets almost no research attention. And with CDD subsumed into the autism spectrum, researchers who want to help can’t find funding for a condition that no longer officially exists. That has to change. This video exists because someone needs to see it and decide to care. @Alexis “All Access” Wilson #ChildhoodDisintegrativeDisorder #beyonddisintegration #regression #medicalmystery #medicalresearch

Our founder’s journey with her son #BeyondDisintegration #ChildhoodDisintegrativeDisorder #Regression #AutismResearch #MedicalMystery

Beyond Disintegration is a new organization focused on unexplained childhood developmental regression — and the urgent need for research, answers, and recognition. Follow along. Share. Help us push this forward. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #Regression #MedicalResearch #AutismResearch @Alexis “All Access” Wilson @yvonn55