Autism regression is a phenomenon where a person (usually a young child) previously could do something but no longer can. Regression usually refers to any skill including: social eye contact, language, toileting, or cognitive skills. Parents usually report that their “normal” child lost some skill they used to have, typically around their second birthday. This visible skill loss can be gradual or sudden but recent research suggests that regression is a process that continues to occur over an extended time period even though the results may not show up until later.
In a 2016 NIH workshop with Annette Karmiloff-Smith, of the University of London explained that the brain has a normal process of discarding unneeded connections during the early years of life but for some children with Autism something goes wrong in this process and too many connections are discarded. Some of those connections are for the skills that the child actually needs like language and that is why we see a regression in that area.
What should parents look for
Parents need to be vigilant about tracking their child’s development, especially during the first two years. Doctors typically ask if a child has accomplished a skill or not but in reality it’s more important to ask:
- Has the child accomplished the appropriate milestones
- Can the child consistently use those previously learned skills
- How much progress has that child made since their last visit
Children should be closely monitored if they are only slowly gaining skills, are using skills inconsistently or have lost a skill. This monitoring is especially important in the first two years of life. Early detection and diagnosis of Autism can make a significant difference in a family’s understanding and services that they are eligible to receive.
Real World Example
My oldest and youngest children displayed neurodivergent characteristics from the day they were born. It was no surprise when they were each diagnosed with Autism at 17 months old. My middle child had a very different presentation though. He hit all of his milestones and everything appeared to be on track.
He had his social smile well before he turned 2 months old. He had back and forth cooing conversations a month ahead of schedule. On his first daycare evaluation, they noted that he was able to respond to his name at only 6 months old, which was 3 months ahead of schedule. At 8 months old he began saying “dada” and “baba” and continued to add new words consistently. He also began to crawl around this same time and to our surprise began walking at 10 months old. His doctors told me he was ahead of the game and not to worry.
As a mother, I had a few concerns mostly around his physical development. My first concern was his growth. He had a weird dip in his growth curve at 4 months old. He was previously in the 70th percentile and then by his next appointment was in the 5th percentile. Because he continued to grow his doctor told us not to worry. My second concern was his asymmetrical physical development. At three months old, one arm was stronger than the other. When he began to crawl he would drag one leg behind him for a few weeks. His doctor told us not to worry because he eventually became more symmetrical on his own. Our third concern came at ten months old when he started to “zone out” when he watched movies.
I repeatedly asked his older brother’s therapy team if they saw any red flags for Autism and they all said no. His doctor was not concerned. Family and friends were not concerned. With all these reassurances, I let my guard down.
The Turning Point
Shortly after he turned one I started to notice a few more odd things. We moved to a new home and he seemed to be sick a lot. He had a runny nose and kept to himself more. He was very snuggly and became more withdrawn. Toys and people were less interesting to him by the day.
He didn’t talk as much as he used to and hadn’t learned any new words in over a month. Around 15 months old he became really obsessed with movies. He zoned out while watching them and would cry for long periods of time if we restricted them.
I brought up my concerns at his 18 month old checkup but his doctor wasn’t concerned. They told me it was my right to make my own early intervention referral if I felt it was necessary but they would not be making their own. I followed my gut and made my own referral. He was assessed a few days later and qualified for speech and occupational therapy services. We gradually added on more services over the coming months and saw many doctors to rule out various physical causes.
His first hearing test showed that he had excessive fluid in his ears. We were referred to an allergist and he started taking medication. The medication cleared up his chronic runny nose and fluid in his ears. When he returned for a second hearing test his scores were perfect. With less fluid in his ears his balance improved, he started to respond to his name again and even started to babble again. We thought we had solved the problem.
Then he regressed again. This time he didn’t totally lose any skills, he just wasn’t gaining them, he was stalled. At 22 months old he was diagnosed with Autism. In just seven months my little boy seemed to just disappear into his shell and I didn’t know why or if he would ever come back.
Language development
After years of little progress with the Picture Exchange Communication System (PECS) and American Sign Language (ASL) we began using an Augmentative and Alternative Communication (AAC) program called Proloquo2Go when he was four years old. Around the same time we moved to a new home and I devoted an hour per morning to Proloquo2Go.
Miraculously, after a few short weeks with the AAC device, he began to speak at four years old. I was beyond excited but also scared because anytime he learned a new skill, there was a chance that he would lose it the next time he regressed. Month by month I waited anxiously for him to stop speaking. Every cold, every sleep disturbance or difficult day I braced myself to lose him for several months again.
Regressions Through Childhood
He still has periods of stalling and regressing with speech and cognitive skills. Each time he appears to gain back all the skills but it’s never an easy road. We learn more about how his brain works each time and use that information to help him work through his regressions.
He has never fully lost his speech since age four, but when he regresses his speech clarity is greatly impacted. We’ve learned that these speech regressions are tied to an illness, especially if he has a fever.
We’ve also noticed new cognitive regressions. When he was five years old he knew all of the letters in the alphabet but by five and a half he could not name a single letter. He didn’t even recognize his name anymore. It took a year to regain the alphabet but he found ways to compensate for this challenge. He learned to read by memorizing words and can read above grade level despite not knowing what a letter “T” is.
His cognitive regressions seem to be linked to his sleep. Out of the blue he will go 2-8 weeks at a time where he cannot fall asleep, wakes up several times during the night and is up for the day at 4am. The sleep specialists weren’t able to pin down any specific cause but when I find ways to shorten the sleep disturbances the regressions are less severe.
Moving forward
Regressions continue to happen a few times per year and no matter how accustomed I think I have become, my heart still sinks every time. I don’t know what the future holds for him but I continue to love him and advocate for what he needs every time those needs change.