April 18 is Regressive Autism Day

Regressive autism / late-onset autism /acquired autism, is where a child develops typically in early childhood meeting all developmental milestones, but then experiences a loss of previously acquired skills, at around 1.5 years to 4 years. Estimates of regressive autism range from 30 - 44% of kids who get diagnosed with autism in childhood. (1,2,3)

This loss/regression is especially evident in the areas of social communication and interaction; such as loss of interest in social interaction, loss of eye contact, loss of spoken language, loss of motor skills and the development of repetitive behaviors. 

For instance, I met all my developmental milestones till 1.5 years, including the ability to able to speak short phrases. I was the happy social butterfly at my first birthday party; I interacted with everyone at the party. I pointed to the distant bird sitting on a tree and engaged in joint attention activities. 

But after my regression at 16-18 months, I lost a majority of the previous skills. By age 2, I lost the ability to talk, the ability to make eye contact, the ability to point, the ability to do a pincer grasp and the ability to hold a spoon. I no longer recognized even my parents. I hid under the table, walked on tiptoe, endlessly spun the wheels on my tricycle and lined up every toy in the house. I was in a confused and dazed state and cried most of the time in daycare. I fussed for eating and sleeping. 

This week, we had studied Alzheimers in my Cell Neuroscience class. In addition to understanding brain function, we had also watched videos of lived experiences. For the folks with Alzheimer's its like their world associations just fade away, they no longer recognize even family members in addition to loss of functioning skills and even language. Ergo, there is a massive regression. There is now a desperate search for research into solutions to reverse this process.

DEJA VU!! - Regressive Autism is like Alzheimers in toddlerhood itself where you forget even your family, instead of in old age. Something must have happened to cause this memory loss and this functioning loss. I can understand why parents of young children find this heartbreaking; they suddenly become strangers for own children. 

Why is there not equal importance given to find causes and ways to stop this massive slide seen in regressive autism during toddlerhood, why is loss of skills only seen as a problem if it happens in adulthood?

References

(1) Hansen, R. L., Ozonoff, S., Krakowiak, P., Angkustsiri, K., Jones, C., Deprey, L. J., ... & Hertz-Picciotto, I. (2010). Regression in autism: prevalence and associated factors in the CHARGE Study. Ambulatory Pediatrics, 10(6), 393-400. doi: 10.1016/j.ambp.2010.06.007
(2)Tuchman, R., & Rapin, I. (1997). Regression in pervasive developmental disorders: seizures and epileptiform electroencephalogram correlates. Pediatrics, 99(4), 560-566. doi: 10.1542/peds.99.4.560
(3)Ozonoff, S., Young, G. S., Carter, A., Messinger, D., Yirmiya, N., Zwaigenbaum, L., ... & Stone, W. L. (2010). Recurrence risk for autism spectrum disorders: a Baby Siblings Research Consortium study. Pediatrics, 126(2), e356-e365. doi: 10.1542/peds.2009-2825