Beyond Disintegration

09/10/2026

Beyond Disintegration was at RARESummit26 this week. 💜
Soraya and Jenny represented us as poster presenters at Cambridge Rare Disease Network (CamRARE) summit on October 7, sharing our work on unexplained childhood regression with the rare disease community.
When Childhood Disintegrative Disorder was absorbed into the autism spectrum, it lost its name and children lost their place in research. The children did not disappear. Days like this are how we make sure they are seen.
Thank you to the CamRARE team for having us, and to everyone who stopped to talk, ask questions and connect. We hope those conversations continue long after the event.
Learn more at www.beyonddisintegration.com

03/08/2026

Hello all, we are very pleased to announce that Beyond Disintegration has joined Easy Fundraising. Please sign up to support us. Thanks!

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06/07/2026

We’re a community of parents who refused to accept “we don’t know” as the answer to why our children regressed. We advocate for answers. We advocate for research. And we advocate for each other.
Together for answers. Together for hope. Together today. Follow along as we build something that shouldn’t have to exist — but does, because these children deserve it.

01/07/2026

Some children develop typically for two or more years — talking, learning, connecting — and then lose almost all of it. This late-onset regression was historically called Childhood Disintegrative Disorder.

One Yale study examined these children at every level: genetics, brain gene expression, brain activity, and eye gaze. At every level, it looked different from other forms of autism — including two findings that overturn common assumptions: their brains were hyperactive to faces, and they looked at the eyes more than any other autism group.

This isn't "severe autism." It's something distinct — and it deserves to be studied as such.

Source: Gupta et al. (2017), "Neurogenetic analysis of childhood disintegrative disorder," Molecular Autism, 8:19 (Yale Child Study Center). 🔗 Read it: https://molecularautism.biomedcentral.com/articles/10.1186/s13229-017-0133-0

21/06/2026

Happy Father’s Day to the dads in our community.

09/06/2026

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

01/06/2026

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

29/05/2026

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.

28/05/2026

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/