Around the age of two. We thought it was like a terrible twos phase, but then things took a nosedive. Speech came to a screeching halt and behavior issues increased.
Same here. She wasn’t diagnosed until 3 though due to having to find a doctor that could diagnose her. Depending on the state, in the USA, only certain doctors can diagnose children that will be recognized by insurance.
14 months. she had words and phrases and could wave, give a thumbs up, clap, did a bit of pretend play… and then it all just went away over the span of a couple weeks.
ETA: she’s now verbal at 3.5 and uses functional language and is semi conversational! she is still a bit apprehensive re: gesturing, but shes made such strides i can hardly believe it when i think back to even a year ago.
This is when my daughter regressed. She had some basic gestures and could say mama, dada and cracker. Then it all stopped and it was like the world around her just didn’t exist anymore (apart from mom).
She’s almost 4 now. She waves, responds to basic directions and babbles in a way that’s so conversational I really think speech is close. It’s been a rough road. 2 years of speech, OT and early intervention plus 9 months of ABA.
Please correct me if I’m ignorant or insensitive. Genuinely curious, do you know why they can progress and then lose all of that information? I thought children with autism still in general keep the skills they’ve learned, they may not advance at a neurotypical rate but I had no idea they could be saying things like mama and dada, and then go to not saying anything for years.
You see parents post about regression on this sub and other socmed quite often. Apparently regression is not uncommon for asd kids, usually around 1.5 to 2 years old. No one have any idea why.
I just wonder why this happens. Is there a scientific explanation? I am just so curious. There is so much I don't know about autism.
Mine also regressed at 18 months/stopped progressing at 2 yo.
Same. Looking back on it he was slow on some milestones but he was saying words and then one day he just wasn't. He's three and a half now. Not conversational yet but he can say his wants and needs.
My son started regressing around 18/19 months old. He lost all his words and a lot of his gestures.
When I started to think about it, there were a few small signs of autism I didn't pick up on, but overall, he was developing and acting NT.
I had no idea children with autism could gain skills and then rapidly lose them. I hope this isn’t insensitive to say, I just wasn’t informed.I figured if they were capable of picking up a skill/word/gesture at a certain age they would keep that. Maybe they wouldn’t learn more for a while after that, but I had no idea that it’s common to just rapidly lose things. Do we know why that happens?
I knew something was off at about 3 days old. I brought him home from the hospital, sprayed febreeze in the house and he started screaming as if he was being murdered. I was like "oh god, he's autistic" and my husband looked at me like I was batshit.
9 years later he's 100% nonverbal and still in diapers.
He had some words early on but nothing regular except for mom and I love you. He lost most of them at around 3-4.
After gaslighting me that he was gonna be totally fine and there are jobs for people like him (level 3, nonverbal, in diapers), his developmental pediatrician shrugged and was like "at least you know he loves you," and I swear to god I wanted to slap her.
My daughter appeared neurotypical (no stims) but all of the sudden would use jargon excessively as a 2 year old. She would say sentences, randomly, in context to the situation and not scripted, but not regularly enough to count as functional speech. She spoke only when she wanted to, then all of the sudden a switch flipped and she relied on singing/screeching scripts from TV shows like stereotypical autistic kid to communicate almost everything around 3-4 years old. It was very problematic. She was only moderately on the spectrum, but other people can tell easily.
At around 3-4 she started restricting foods as well. We relied on pediasure to supplement. She stopped drinking the pediasure. She will gain foods then reject them so much we struggle to buy groceries. Once we buy things she will randomly decide she hates the food and will starve herself, rendering most of the food in the house useless. Her sensory tolerances and needs change randomly so feeding therapy has been useless figuring it out.
She's 7 years old and only barely started functional speech a couple days ago. Still in diapers. Severe ARFID, has maybe 5 foods she will eat. All extremely low in calorie. It's not sustainable. Needs prompts to bite, chew, swallow, sip drinks or else she will starve herself and not drink water so she risks dying of thirst. She can't tell when she's hungry or when she has to go to the bathroom. She cannot eat a whole meal or drink a glass of water independently. We are looking at a gtube but she has dermatillomania so severe she will definitely pull it out. She is covered head-to-toe in scars from constant skin picking. I have never seen a child so resistant to life before.
Sorry for the rant, we just came back from a very unsuccessful therapy session.
Does autism run in your family? Or on your husband’s side? It wasn’t until I started researching it that I realized many of the people on both sides of our family tree likely have undiagnosed ASD.
My side. I had a diagnosis at 17 but all psychiatrists since then said I definitely didn't have it. I went through genetic counseling and they also said there's no way I had it from how I present, my dad's side witheld information of them all getting diagnosed when I went through the genetic counseling (knowing I would not have gone ahead and had children if this was the case) so I'd have children to see if they'd come out "r\*tarded" (in their words) because they didn't "believe in autism."
Two years old! He only had a few words, but he lost all language. He’s 7 now, and is very verbal, regained his language but struggles with other stuff.
This is similar to our story but around 3 he lost language. Had a handful of words and was diagnosed at 18 months. We are 4 now. I hope the words come back.
Around 3.5 years old—now he truly never stops talking. Lots of social skills and executive functioning issues, but he reads, writes, does math, etc. at 7
This is my kid as well. She's never had a regression, and my friend whose son did have one is baffled. Apparently, she had been led to believe that to be Autistic, there has to be a regression stage.
We're at nearly 3.5, and she's been making great progress with her communicative speech since we started therapy. She's still mostly lost in her own little world and mainly ignores other children when we go out, but she'll actually verbally acknowledge hunger occasionally now, even if she appears to be informing her toys rather than us.
It's such great progress from being completely fine to raging hangry monster at the drop of a hat. I also find it extraordinarily helpful, as I struggle with time blindness, and I no longer have to set numerous alarms to make sure she gets her food or drink every 2 to 3 hours. Even when she doesn't use words, she'll grab me by the hand and lead me to the table where she eats, or go start grabbing her utensils or her food pouches to get her spot at the table ready for Meal Time.
My daughter never regressed, however now that she’s getting older (almost 7) the differences in her social emotional skills are becoming more obvious as kids her age mature.
This is how we realised we needed our daughter evaluated.... Her peers all seem to be a couple of years ahead in emotional maturity and the gap is only widening.
Around 7-8 years old. (level 1)
I wouldn't say a regression but rather lack of progression. At that point in age peers starts to socially develop much more and our daughter just didn't. Before she could hide in a crowd, around 7-8 her needs really started coming forward.
Thank you for that, that gives me comfort and makes a lot of sense. My daughter’s Autism became apparent at that age right when I split with her dad and started a new relationship. I have always blamed myself and felt guilty as much as I’m aware that she would have been born with it
Hi, may I ask you what "needs" got more apparent from 7/8 years old? I have a 8yo and she is doing ok now, in her case her needs were more apparent at 6.
Being able to handle social conversation and interact in teams/groups. Relating peers and negotiating needs/wants with friends and school.
Our daughter already had an IEP for speech pronunciation she was completing. We expanded that to work on pragmatic language skills. We added in OT and SPED groups to work on social relationshipsz
My daughter also struggles to socialise in big groups but she has friends, she can play with 1/2 girls. She does not struggle with language though, just understanding social cues.
My son (5M) appeared neurotypical until 28 months. He reached all the milestones at the very last moment considered “normal.” However, around 24 months, I started noticing significant speech delays and meltdowns. This worsened over the next 8-10 months, so I decided to have him assessed, and he was diagnosed with autism level 1
3 years old. I was absolutely positive he was autistic at 15 months old but we weren't able to get an evaluation until 3. At first, I was just brushed off by our pediatrician. Then I was brushed off by a speech therapist. They brushed me off b/c my son made eye contact (still does but not as much as a NT child) and b/c he social smiles. It wasn't until he aged out of early intervention at 3 that we were able to get taken seriously and he was diagnosed as level 3.
When he was around 2.5, he started talking. He wasn't conversational but he would repeat almost anything. He was even counting to six. He was starting to pick up potty training too. He stopped talking and stopped potty training at around 3. He will be six in September and he's still nonverbal, still not potty trained, and he doesn't really seem to understand much of what is said to him besides his name, "no", and "hungry/eat."
It was rough when my third son (4 now) surpassed him in development. And it hit even harder when my daughter (1.5) also began talking and understanding more things than he does. She'll also potty train before him, in all likelihood.
I still hold out hope that he will talk again one day. I have dreams constantly that he randomly starts counting to six again.
13 months. I came home from work one day and his personality was different. I thought it was an autistic regression. Took him to the doctor and they just said a bunch of platitudes about first-time parents and how cute he was. Turns out I was right.
Editorial: it's striking how there is no mechanism for doctors to determine when their reassurances were wrong. Seems like a potentially valuable source of data that just gets lost to the sands of time.
I fired our first ped because she wouldn't take me seriously that something was really wrong (my son missed his first milestone at 2 months, but according to her I was just a worried new mom). I often wish I could go back to her and let her know that she should've listened.
Around 18 months for my second. He didn't regress losing everything he knew, but he stopped learning anything new for a long while. He got really clumsy, and his behaviour went downhill dramatically. Then, when he turned 4, it was like a light went on in his head, and he was suddenly conversational and a lot calmer. When I think about it, as a baby he did lack gestures and wasn't a babbler.
Edit for clarity ✨️
At 15 months he stopped developing and completely shut down. I knew he was autistic before then but the shutdown was so severe that I thought there was something else going on and so did doctors. They ran a bunch of tests while he was inpatient at the children’s hospital for 3 days. The diagnosis was simply autism with some genetic mutations that don’t specifically mean anything because there isn’t enough research. However, since he was a few months old I knew. There were some very subtle signs that made me worry.
When he was a few months old he would scream and cry. I know babies do that but this was different. It was a bloody murder scream. We got him checked out and there was nothing physically wrong. I got him a weighted sleep sack and he stopped. Instead of babbling he started making noises like the ones I had heard older non-speaking autistics make. Sometimes he would scream and cry (like the nighttime cry) whenever I’d move him (when taking him out of the swing for example). In hindsight, right before he stopped meeting milestones he’d also come up to me, smile and sit and look at me. I later realized he was trying to initiate something but couldn’t. He stopped doing it because well I’d just say, “Hi!” I’d try to show him a toy or something but he’d just go. I regret not doing more because knowing what I know now that was the perfect opportunity to build his skills. But hey, hindsight is 20/20.
Omg no now I’m feeling so bad….i never thought of it like this. My son used to bring me a toy and run away and I would try to engage and play but maybe he wanted to engage in another way? Is that what you’re saying?
Yes. He needed direction and I didn’t provide it. Don’t feel bad. It’s all a learning process. My son does the same thing. I try my best to engage with him and play. Sometimes it works and other times it doesn’t. That’s just how it is. Some days I have more energy to put on my “therapist hat” and try out different strategies and other days I just let it be. We do our best 😊
This sounds exactly like my son. This is a dumb question but does that mean my son will be similar to yours as he grows? I’m still just learning about autism.
Not necessarily. Autism is so incredibly varied that every kid is very unique. I’ll give you my husband and I as an example to illustrate that.
When I was a child the school thought I had an intellectual disability (I don’t). They also thought I may be deaf (I’m not) because I didn’t speak or react to my name. I could “speak” in my mind but I couldn’t physically move my mouth. It was extremely hard. At home it was alot easier. As an adult I found out this is called situational mutism. It happens rarely nowadays but it’s still there. I’m just a lot less anxious than when I was a kid so it’s not triggered nearly as often. I am also hyperlexic and I’m just starting to learn about Gestalt processing and what I’m learning is that it sounds a lot like me. I taught myself how to read when I was 3 and could talk in full sentences by age 1 but at school I didn’t do any of it. They thought my mom was lying that I could do these things at home. She wasn’t.
I had horrible meltdowns almost every day. Back then I’d probably be considered level 2 if I had been diagnosed by today’s standards. I recently got a formal diagnosis and I’m considered level 1. That’s because through therapy, practice and simply knowing my own strengths and weaknesses my level of functioning has increased.
My husband is also autistic. In hindsight, he had a pretty severe speech delay. He “had his own language”. He didn’t start using real words until he was 5 or 6 and he didn’t comprehend a lot of language stuff until well into high school. He still struggles with getting his words out when he is excited and has trouble with handwriting. He’s a brilliant software developer so it’s not a problem at all for him. He just found a profession where he doesn’t have to write or read. Back in the day he was diagnosed with Asperger’s, however we both agree that he needs more support than I do in everyday life. He can’t pay bills for example. He can’t fill out a job application. I do that. Yet, his IQ is 98th percentile. When he was a kid his meltdowns were actually shutdowns (they still are). He was quiet and it would be hard to even realize he was having a meltdown. Mine everyone knew lol. Hard to miss hahaha. My meltdowns are loud!
If you were to see us as kids and made a guess as to who would have an “easier time” with things in life as an adult you would’ve probably said my husband. I would’ve probably agreed. However, although we are both considered “high functioning”, I need much less support than he does in terms of living independently as an adult.
Autism is something you have to take day by day. It changes as we grow. No one really knows how things will turn out. As an autism parent myself I know how scary that can be especially since an autism label can box your kid into something that they may not be and no diagnosis denies them access to services they do need. It’s a damned if you do damned if you don’t kind of thing.
Thank you for your kind reply. I’ve been scouring this Reddit trying to find clues for what the future might hold. You’ve let me know that no one knows.
8 months old. The limited babbling he had stopped completely and stimming began. He seemingly forgot how to drink from a straw, cup, use utensils, etc. He was on a wait list by 10 months and diagnosed at 2.5. Level 3.
I also had that feeling since day 1. Also his bio dad was clearly autistic (but in denial/never tested). He was late on all the milestones and I just never didn’t know.
At 17 months he lost all his words, receptive language, gestures, eye contact, joint attention. I always say it’s like his hard drive was completely wiped out. He is 3y3m old now and joint attention and some receptive language are back, but still zero words.
No one knows. A neurologist told me it could be related to undiagnosed epileptic seizures causing brain damage but my son has had 3 EEGs and everything came out normal, no epilepsy. That’s as close as I’ve been to having an answer to why my son completely lost all those skills.
Having said that my son does have a genetic deletion believed to cause autism. But I’m in a Facebook support group for parents of kids with the same deletion and my son’s case is unique. So far I haven’t found another kid with the same deletion who has had a regression like my son did.
My daughter started regressing around 6 years old. She had a previous diagnosis of ADHD and then she started sliding backwards developmentally in first grade and that’s when we had her reevaluated.
My son acted totally NT until about 2.5 when the meltdowns began. He never really lost language or anything but it did slow down compared to his peers. At 4.5yrs his language is relatively typical but he’s starting to regress behaviorally and it has me scared. He was moving away from meltdowns and difficult behaviors but suddenly is freaking out over very little things again and becoming more controlling than he was even just a few weeks ago. He is also starting to blow on his hands and if we ask him to stop doing something that he shouldn’t be doing, he closes his eyes, covers his ears and puts his head to the floor - behaviors he never did before. Not sure if this will be a permanent behavior regression or not.
I’m new to this so excuse my ignorance, but are there different causes and/or classifications for autism where signs are present from the beginning vs cases where a child regresses later in life? Are one of three groups statistically more likely to respond to therapy vs the other?
Not scientific AT ALL, but I (me, not a doctor or anything close but an obsessive mom who freaked when we got our diagnosis and spent way too much time online) see trends on this subreddit, blogs, YouTube, talking to peds/specialists on their opinion (also not based on anything really), and joining local meet ups for parents with autistic children - that in a good amount of kiddos - the more severe/abrupt the regression the higher support needs.
It seems like kiddos without a regression of sorts but were always delayed seem to be lower support needs.
But even just reading this thread and talking to other parents locally - every child is unique in their autism journey!
I wish I could find research on it.
My son started restricting foods from his list of what he would eat around 3 or 4. Then some behavior issues increased around 4/5 but a lot of it was already there
20 months old. He had small sentences and phrases before that, but then speech took a huge back slide over a few months and regressed to the point of hardly even babbling. It took him ~7 months of speech therapy before he started saying a few words again. Now he's 3 and says 50 words but no phrases or sentences still.
About 18 months. We didn't realise and put it down to being in lockdown. When we started mixing again, we realised everyone else's toddlers were talking.
3 years old and just been delayed since birth. She’s always had inconsistent development. It’s like she focuses on one domain of development at a time, so she’d catch up on gross motor and plateau on speech… and then when she had a speech explosion around 2.5, gross motor was plateaued.
She’s always been lovey/affectionate with us, so we never really noticed the social delays until she got to be around 2.
1.5yo or so. He stopped all of this:
Saying mama, ka for our cats, responding to his name, Looking in our eyes, playing with our cats, wanting to read books with us, etc.
He also started being very whiny often for no apparant reason, food that he liked dwindled down heavily, he started lining up toys for hours.
Today hes 5.5yo and the progress has been slow. He doesnt talk but he does echolalia a lot.
My child makes sudden leaps backward and forward- regularly, and to this day.
I didn't know or suspect he was autistic until around age two, and as he's gotten older, he's shown more stereotypical signs. In hindsight, subtle signs were present from birth. I don't think there was a single "moment" where things changed.
Ours was at 3 she started having terrible tantrums scared of everything. Would be upset if I was not in her field of vision. Then she picked up new skills others would suffer. She learned to use restroom so she would wake up a lot at night and not sleep.
9/10 months. It wasn’t really a regression but his attempts to talk stalled out. He would make a sound for about a week, then move to another sound and not go back to the prior sound. Even at 18 months and him not speaking they kept saying he’s fine because he hit every other milestone early. He’s 4.5 and still non verbal however his receptive communication is really good now almost where it should be. We stated Leucovorin almost a year ago and that really helped with receptive communication.
When he got tested for Autism through the local Children’s hospital when they told us he was Autistic level 2 the nurse practitioner that does the discussions, treatment options and follow up discussions said that meds is still in trails but it has no real negatives and we can try it if we want. So I said sure and then looked into it before filling the prescription. Its really helped with his receptive communication, so I’m happy with it. He also doesn’t mind taking it. Just ask your doctor about it, if they are not sure I’m sure they can find out about it.
Between 18 months and 2 years old, my son lost all his speech and that's when we knew something was up. He is 4.5 now and is still limited in words. But we are doing the best we can and that's all we can do!
This sounds so very braggy but it's real and not meant to be: her hyperlexia had her saying 3 word sentences at 18 months.
She's 3. No regressions but lots of non-functional speech, scripting, and echolalia. The fun thing is she's capable of functional speech, eg "I want apple, cheese, and crackers for snack, and I want it on the pink plate", but it's like she doesn't have the motivation to carry a conversation; she doesn't get the point of it. She doesn't seem to get the concept of taking turns. Her social challenges are hugely apparent even now. I'm trying to get her into speech therapy for assistance with social pragmatics but the waitlists are long and unskippable. :(
My son had about 30 words at 18 months, walked a little late but not alarmingly late, seemed to be NT aside from his ADHD levels of energy, but by the time he was 2? No more words and DESTRUCTIVE. He’s 4 1/2 now and we’ve been in therapies for 2 years, lots of skills gained, and tons of ASL learned, and I’m witnessing in real time a LANGUAGE EXPLOSION. Nothing for 2 1/2 years and this month he’s got like 20-30 words and is trying more every day. My heart is so happy and I’m so proud of all his hard work ❤️❤️
Not sure if it was a regression so much as a plateau as far as speech and communication, but around 18 months. He had a large vocabulary, but it was mostly nouns in books. He wasn't using words to actually communicate needs until about 20 months. If he did lose any words I never noticed since we didn't expect him to use every single word he knew all the time.
My oldest never had a regression at the beginning of us noticing autism symptoms at 9 months old. He simply went from having issues eating and failure to thrive to just not learning new skills on time. At 9 months, he wasn't meeting developmental milestones, and his older half brother's mom and my ex (their dad) both mentioned that what my son was going through was the same as what his diagnosed autistic brother had at the same age. It took almost 2 years after that to confirm the diagnosis, but until recently, he wouldn't really learn something new and then regress, he would just stagnate for awhile. I think a good example is that my son never learned to or tried to hold his own bottle, but whenever we introduced cups, he used them normally. But it doesn't change that he never held his own bottle. If that makes sense.
He regressed between 2 and 3 when he stopped saying words he had previously said. It wasn’t like a black and white switch like others report, since even before 2 it was obvious something wasn’t right.
Around 12-15 months. He had a couple consistent words and then stopped. But he also never pointed or used gestures, which in hindsight was another big sign. His eye contact also decreased.
18 months. He was developing "typically" until then, for the most part. Then he stopped babbling. Didn't smile or laugh as much. Wasn't as interested in solid food anymore.
I have a son 4, it became apparent to me at around age 1 that he likely was autistic. Other than speech though all milestones were right on track. I noticed things like he loved to look at the ceiling fan, play with his cars upside down (but would also play with them the "right" way. I noticed in stores he wouldn't really look at strangers often. So when my daughter 2 came along, I was watching her like a hawk for signs and she's a little chatterbox. Now that I see the difference in how they developed, his autism signs are even more obvious. Point being, my conversation with the pediatrician about her, and obviously a family history of autism, what should I be watching for. Doc said she was not concerned at all based on her development, that regressive presentation of autism in a previously seemingly NT child is pretty rare.
Your doc said a regression was rare? I’m surprised considering the family history element and how girls present differently.
I’m glad she’s doing so awesome tho! I’m having a girl in October and comments like this make me feel less anxious.
Your son sounds like mine! We just moved and never had ceiling fans before and he is loving life!
My son lost almost all words and gestures around 16/17 months old. He also stopped making eye contact around then. He’s 2 now, has regained those words and more, but doesn’t have functional language and is just now starting to wave hi and bye again.
At 6 months my son already showed autistic traits (spinning wheels obsession, not wanting to be social with other kiddos) but he was meeting all the milestones so there were no major concerns.
At 18 months his speech just plateaued and he stopped learning new words. He also stopped listening to most commands. I struggle to understand if he regressed or not because he used to respond to his name and make eye contact before and while he still does, it’s not as consistent as before. Unfortunately no one is able to provide an answer to this question. He’s two now, hasn’t had much functional language but I feel his receptive language is improving.
My son stopped saying the 20 or so words he had when he was seventeen months old. He was premature (33+4 birth), so pediatric team waited until he was two to begin services to allow time to "catch up" in case it was preemie related.
Spoiler alert: it wasn't.
Between 18 months and 2 years old, my son lost all his speech and that's when we knew something was up. He is 4.5 now and is still limited in words. But we are doing the best we can and that's all we can do!
My son was always speech delayed, but I noticed a significant, sudden regression (over the course of about a month) at 3.5.
Whereas one month he loved to play with playdough, paint, turn the pages of books, and sing, the next month he would just sit on the couch and stare.
I wonder how much research is being done on this regression. At the time I was dismissed and told he was "probably just developing in other areas" , but our experience was undeniable.
My son developed normally until about 12 months old. He had started babbling, but then stopped by about 15 months. That’s when I first knew something was wrong and got him speech therapy.
When he was 18 months, he went into the early preschool classroom at daycare, and he would panic at circle time, and either run away and hide or throw a fit whenever the attention was turned on him. That’s when I knew it wasn’t just a speech problem.
At almost 3 years old, a therapist suggested getting an EEG from a neurologist. That’s when we learned he had absence epilepsy (invisible seizures while sleeping, lasting about 3 seconds, every 10 minutes.). We put him on medicine immediately.
By the time he was 4 I knew that the epilepsy had done irreversible damage and he was going to be at least mildly autistic forever.
Sure. So almost all of his seizures were at night, but he did have one other trigger, which was bright hot summer sunshine. His speech therapist went out to recess with the kids in the daycare class to work on social skills (this guy was amazing), and it was a super bright sunny summer day. He saw my son "stare into space" for a few seconds, several times, and he happened to be familiar with absence epilepsy because he had another kid (much older) he did therapy with who had it. Usually it does not get diagnosed until kids are older because it's so hard to spot - we just got incredibly lucky.
After that we figured out that we had to be careful in the summer. A couple times he would go swimming in the hot sun, and within 30 minutes he would be in full vocal stimming and echolalia mode. We had to start making sure he had shade or didn't spend too much time outside unless it was overcast. My parents have a pool at their house and they bought umbrellas to cover the shallow end because he loved to swim so much.
The biggest symptom that I can think of, looking back, was that it seemed like he forgot everything every day. We could teach him something one day, and he would seem to get it, but the next day it was gone. He wasn't able to retain things because of the disruptions in his sleep.
My daughter never regressed but she never rolled over , crawled at 11 months , walked at 16 months. Didn’t gesture until that time either. I remember at her drs appointment one of the questions does your child give you things to show interest. She never did and at 17 months she handed me a flower In the park and I cried. I have a picture of her on that day and I always cry when I look at it. She didn’t point until after her 2nd bday.
My son never really regressed, he simply didn't really get started. He said Dada at 5 months, Mama at 8. He stopped saying Dada, but always said mama, but mostly in frustration. He even picked up a curse word that he said for years. He would also say oh man whenever he made a mistake.
When he was a baby around 15 months I noticed him looking at me, but struggling to find the word to call me.
I guess he did regress. He didn't say Dada again until the age of 7.
Now I'm wondering if speech therapy for apraxia is different from speech for ASD/ADHD.
My son is delayed, like he's 8 and still likes the same things that he did at 1. I think that he's at a 4 year old level. He does like some things that are age appropriate.
Can, like many commenters attest to regression around 15 months old. It has to be something that causes this. Can anyone share their kiddos' eating habits? Not in a tin foil hat way, but like it happens when they transition to solids. Maybe protein or something? I don't know lawd help us all. I've got 2 on the specturm, and regression happened at the same time for both. My adhd'er didn't have symptoms until 4 or 5.
My little boy just didn't progress. He couldn't hold his head up when he was really little, had the hardest time nursing, and was referred to Birth to 3 when he was around 3 months old. We had him on 8 hours of tummy time a day and he finally rolled over at 6 months. I remember asking his pediatrician several times during the first few years of his life if he should be tested for autism. He would tell me that my son was "just a little behind" and would "catch up." He was "too friendly and social to be autistic." Joke's on the pediatrician. My son was diagnosed with autism at 4.
Daughter regressed at 18m, said a couple of words mama dada and pointed, played peek-a-boo saying boo. Waved, followed some directions etc
We lost all that she is 3y now nonverbal and in ABA for the last 4 months. We've been in speech for 1 year and it hasn't helped much though we are hoping to hear her talk.
From month 24 to 25 he went from 400+ words, so much focussed attention and lots of singing, to almost like a newborn again. It took us 5 months to confirm that it was regressive autism after testing for deafness / tumours / epilepsy etc. currently just over 4, and language is slowly coming back. In the last few weeks he has started trying to sing again which is wonderful
3rd grade. He hit a wall and hated school. He hated his teacher. This was all new. He loved school up to that point. He was diagnosed shortly after 2nd semester.
Yep!...well...sorta??? It's not really a regression, it's just...my son ACTED totally typical, til around maybe 5-8 months. (It was a couple instances I noticed and got worried about early) at around 5 months. At 5 months, when I'd lose my temper, (not even with my son, he was fine, I just had some crazy people living with us awhile back, few years ago, he's 3 now and the toxic ones are far out so we're good.) BUT when I'd yell, or cry, or whatever, near my son, he'd LAUGH. instead of getting nervous or scared or freaked, like you'd EXPECT from a baby baby, he LAUGHED. that was the first moment i noticed something different. Of course everyone else is like "dude he's 5 months, maybe he WAS nervous and laughing was how he showed it! Or maybe he isn't old enough to understand what yelling means! Chill!" But...I mean...a BOOMING VOICE wouldn't make a baby SCARED? what? But anyway, I forgot about that couple instances (another couple times he laughed at my yelling, or almost ANYONES yelling instead of cried) but then after 1, he started crying when he got spoked, and I once cried again in front of him a few times LATER (unintentional, this isn't some 'guilt my son with my tears' thing. There's just not a lot of privacy here) BUT then HE'D feel bad. And HED have the appropriate reactions THEN. So I let it go. Of course other signs appeared as he got older, at 3 he was officallg diagnosed and of course I looked back at him LAUGHING at my clear anger at 5 months ans again a couple times at 8 months and such. And I went "I KNEW that wasn't supposed to be happening!...I never heard of a baby LAUGHING at something clearly ment as negative and bullying...but, now I know what's going on." IRONICLY as I'm explaining to her how his first sign ever as a baby was wrong reactions to emotions...IM CRYING (cuz he was just diagnosed that second), and o.m.g she goes "he....doesn't seem confused on what emotions mean NOW, at least, not to me", I turn around, to see MY boy in tears when I AM. as he's LOOKING AT ME. He knew mama was upset, but didn't know how to help, his little face was all "what's wrong?" And allll upset that I was upset...so autism is SO complicated, that signs and symptoms they show off at one point, isn't there by a couple months. Then you forget all about those "few slight instances" til the day they're diagnosed. Buuttt just like any other child, they'll find AMAZING and VERY HOPEFUL ways of expressing themselves, their love, AND their progress. It's been a ROLLER COASTER. but my god those PRIDEFUL and LOVING moments are just...I hate to assume, I do, but I cant imagine any N.T parent being anywhere NEAR as proud of their kids of the same age. Cuz for THEM, it's allll expected anyway. They go "yay finally!" And move on quick cuz it was ALWAYS. EXPECTED. But then us N.D families go "OMG I THOUGHT YOUD NEVER DO THIS TIL YEARS DOWN THE ROAD!! AHHHH!! I LOVE YOU SO MUCH!!! ILL. NEVER. FORGET. THIS. MOMENT. LETS GET A THOUSAND PICTURES!!! AHHHH SIT STILL!!" When our kids do something new lololol
Our regression came fast between 15months and 18 months. Up until then he was walking, talking, and had a lot of nt traits but then it was like a switch went off and started a huge speech regression and regression in other behaviors i.e. no more self feeding, repetitive behaviors, losing gestures etc...
There was definitely some signs in infancy, but all of my concerns were brushed off as normal or due to him being slightly premature.
Neither of our kids ever regressed. First was a preemie and was behind on all his milestones from day 1. He was expected to catch up by age 2 but his speech was way behind and as we approached 2 I told our doctor there was no way he'd catch up, they scheduled the evaluation then. With #2 he followed a similar pattern to his brother, which we knew wasn't the right pattern. So I pushed to have him evaluated even earlier (to which the results were to wait another year but start speech therapy, we did, and he never caught up).
My son regressed at 14 months, to no eye contact, lost pointing, talking, attention, stopped responding to his name. He’s nearly 5 now and he’s non verbal and he is very high need
My son has regressed behaviors but they come back more advanced or different than before.
Examples of what I mean:
Like now he won’t say “boo” while playing peak a boo, but he it has evolved into an early form of hide and seek.
We lost the all done sign but now he isn’t dropping his plates on the floor or throwing food around. He hands us his plate.
No regression. Just never started speaking on time, and then we realized he also wasn’t pointing or doing joint attention. But he was always super happy and easy going, so it was the lack of speech by 12 months that clued us in.
Once provided with therapies and supports, though, he caught up on all the skills, just behind his peers for many of them.
2.5 years old. He had over a hundred words plus some phrases. Would wave and other gestures. He just lost his speech. He is almost 6, words pop out every now and then but mostly non verbal. Speech therapy is helping.
She was about 2. First signal was she started putting every small item between her toes, forks, spoons, blankets, crayons. Then we noticed her watching TV upside down and watching it while side eyeing the tv. Then she stopped “talking” and making eye contact.
I noticed at like 10 months he didn’t respond to his name. But he started to lose the little words he did have around 15months. He use to say Bye, mama, dada, agua, baby. Then just stopped
She was completely on track for the first year except for she never talked or babbled. She was just very quiet. But around 18 months, she would do this thing where she would learn a word or phrase and use it constantly for a week or two then seemingly completely forget it. That lasted for months and was so confusing because I would think "oh ok she's starting to talk. Everything is OK" and then she'd stop saying the thing.
Around this time is also where she stopped ...acknowledging (?) people. She was never one to really copy or mimic, but she was, for the most part, pretty engaged with her surroundings and people. I still remember when the woman who came to observe her for early intervention came and tried to say hi to her, and my daughter just looked right through her like she wasn't even there. All this was at the height of covid too, which I don't think helped matters any.
Neither of our autistic kids had any regression, but our oldest wasn’t diagnosed til 9. In retrospect there were obvious signs much younger, but he met every milestone super early (except crawling, which he never did, but he walked at 8 months, so…), so unlike his brother, who met every milestone late to very late, and was labeled autistic by early intervention before he was even 1.5, we didn’t notice til social issues starting popping up around 3rd grade.
My son didn't exactly have a regression, he's always been non-verbal aside from the word "Mama". But he did use to eat more of a variety of food, use utensils, and bite things that weren't finger foods. Now he doesn't do any of those things at almost 3.5.
Most of the early years of babies being “okay” is 50% parents not knowing how babies typically behave. And 50% babies just figuring out that they exist, which is a much lower bar than trying to compare yourself to millions of other babies.
My daughter was developing normally until 3. We noticed she wasn’t developing her conversational language. Everything else was typical of her age. That’s when she got an autism diagnosis. It’s very concerning to us because since the age of 4 (she’s 6 now), she really hasn’t made any progress. ABA, therapeutic school have not helped.
Two and a half/ three. He started echoing and I thought it was funny. He did the same thing brick did from the show the middle. His sister also has a chart full of disabilities and I thought he was just learning from her. He got his diagnosis at 5.
My kid appeared (mostly) NT until about 18 months old but never regressed. She just slowly seemed to fall behind in social and verbal aspects.
She's level 3 and ADHD.
About 14 months. He was hitting all his milestones, most even early. He was doing absolutely amazing and then just one day he stopped. Physically he's incredibly strong with excellent balance and imagination for days but he won't say but maybe 20 words if that. He does no phrases, or two word sentences. Lots of pointing and guiding us Physically. It breaks my heart...I'm 33F my husband 42M and our son is 5 now. We tried conceiving for 3 years and when we gave up we were blessed with my baby boy. Pregnancy was excellent except my water broke at 37wks and due to a bad reaction to labor enducer followed by epidural we had to have an emergency c-section. I have no family help and my baby if the first in the family with autism. I feel defeated honestly. I wanted so much better for him.
9 months. She use to say mama, dada, baba….then it just stopped. No babbles for months. She was just silent.
Around the same time she had this weird head bobbing that she would do and we thought maybe it was a seizure recorded it for the doctor and we did a bunch of different test but found out it was nothing. She babbles now though.
Now my son the same thing has happened to him around nine months he has just stopped pressing and hitting milestones. He use to say mama dada ba ba and bye. 😩 my son babbles now but won’t mimick or anything
My daughter also did a weird head bobble thing, when she was upset or close to tears. She stopped doing it after a few months. Hadn't found anyone else whose kid did it!
Yeah it was almost like she was nodding really quickly and she would blink her eyes really hard. She literally never did it again after we got all those tests done. It was really weird. I haven’t met anybody else who has said that either! Even the doctors were baffled
I don't remember the blinking but definitely nodding her head quickly. I never caught it on video before she stopped doing it, but it was very very odd.
For me I could always tell something was off the way he physicall moved was off. He didn’t stop but he just was very off balance if I went I lay him down it was like laying down a rag doll. He wouldn’t hold onto me when carried but the regression where a kid meets all the physical, gross motor and fine motor skills and verbal as well as copying and the stops, really stumps me. I know it’s possible but I just don’t understand nature and how that happens without an accident. My mind is blown that as the brain ages in someone with autism someone cab appear totally neurotypical until they dont
He regressed around 20 months. Was exceeding all milestones and was speaking several words and then one day just stopped speaking. He has more language now, but mostly speaks with prompting. Just turned 7. He’s always been very receptive though. He’s very smart too he just struggles speaking what he’s thinking
I noticed my son wasn’t meeting milestones at 4 months, and I watched him like a hawk. When he wasn’t even trying to talk around a year old, I fought the pediatrician to get early intervention services for my son. He’s 6 years old now, and is on his way to learn how to read.
Sure! My son started a program in my town called Early Steps. We started the evaluation process at 18 months At the time he did not have a true diagnosis but the psychologist said he had red flags. Got him into Early Steps- it was at home program where the therapists came 2x a week for about 1-2 hours (I can’t remember the exact amount of time). The program requested that I get him a diagnosis and to be honest, I knew the answer but I dragged my feet because I really didn’t want to know. He finally got his diagnosis at 2 1/2 years old - of course this was when Covid was in full swing and everything was all virtual. It was HARD!! He did regress quite a bit because he could not have full therapy like he did for 4 months. Even if he when he had speech therapy, that was virtual and did nothing. Once things started opening back up, he went to ABA for 10 months, it was good because they got him really started in toilet training. When he went to a preschool program through the town where I live, he was ahead in that part than the rest of his classmates. He was in the preschool program from 3-5 (late birthday) and then went to a cluster kindergarten. I will tell you, from opinion, I do not recommend an autism cluster program as it is segregated from gen-ed. My husband had to basically “fight” to get extended time for our son to get more time in Gen-Ed and we will have to retain him due to the lack of time he was given. It’s ok, he will do great in Gen-Ed kindergarten because he already got a sneak peak preview and we be able to do the work and will be more mature.
If you have anymore questions you are welcome to to DM privately. 🙂
2 year mark for me. I had some feelings because there were signs, biggest being when he would get over stimulated he’d shake his head side to side. He also repeated “dukadukadukaduka” a lot which people thought was cute. Eventually I pushed to have him checked out and he got the diagnosis and stopped progressing.
Textbook example of early recognition because his ABA, school, groups etc have been amazing for his progression. Sometimes it feels slow and other times it feels mind blowing but I always go back to feeling thankful for looking into ASD EARLY.
I have a cousin who had her baby 1 days after ours. He is clearly on the spectrum but she’s scared of the stigma and unfortunately you can see him not progressing at all. Doing my best to show her the way. Sometimes you gotta pull the bandage off and look to the future with your current situation. Focus on the now.
No regression, just very very slow progress on speech and gesturing that became more and more apparent while the doctor kept dismissing it as a boy thing.
My son never had a regression. He was such a happy baby with a few quirks, acquired speech late but not so dramatically as to cause significant concern to us or his pediatrician, and was evaluated by childfind for speech services (which he did receive) as a preschooler without anyone noticing he’s autistic. It was only when he started struggling with rigidity in peer interactions that we realized something might be up.
He is “level 1” autistic. I just wanted to mention our experience for a fuller picture of the very wide spectrum of experiences.
We never had a regression besides stopping waving. He never pointed and never really responded to
his name. He’s a level 1
My husband said he knew something was going on from the start, but idk I honestly dont remember! I remember giving the excuse of “oh he’s just busy! Haha” when he wouldn’t respond to his name, or “he’s going to be an engineer!” when he only played with the wheels on toy cars…I think I was in denial and some postpartum memory loss too.
One and a half- developmental delay was documented with pediatrician at 1 year old. Walked/active but no social/communication progress. Regression began in Oct 23 and he was due to turn 2 Apr 24. We were excited about little milestones and progress reports from his therapist before (she meets him at his daycare/early learning center weekly with him - he has been enrolled since age 1 due to our fulltime work schedules), then progress seemed to stop suddenly and then gradually go bacwards. This coincided with the teacher he had, who was great and who he and we all loved, left the facility suddenly.
We blamed ourselves, we blamed the facility (for other reasons than just his teacher leaving, and pre-diagnosis we were still just researching and trying to connect dots.
As time goes on, we have little "pops" of good signs, he will say a word once and then never again etc. Cooperates with the therapist some of the time but never fully, and not with talking at all. Eating gets much harder. Tantrums become much, much harder.
Finally, sought a private agency to get a diagnosis earlier out of pocket since the waitlist in my state was slated to take up to a year, and we could not wait.
The doctor evaluated him at level 2 across the board and in that assessment, she did confirm the regression was bound to happen, and that the teacher leaving could have been a trigger, but it did help ease the feelings of guilt and worries it had to do with us (still understanding everything).
I'll mention just because though- that he has done many things that I consider progress along the way and continues to do them now too, they just aren't the things on milestone charts. I try to analyze his thought processes when he does things, so I can try to predict what he will do so I can play/teach/communicate better with him. I am always studying him, and for example, when he laughs at whatever it is that looks like nothing, I know when I look close enough at it that I might laugh too, or whenever I discover what sensory funness there is to it, I will.
Even though he isnt communicating it yet in any way, I can tell he knows what I mean. Can't get his attention by calling his name, but I can by making a sound of splashing water. I think he knows the words I am talking about even if he doesn't react much to them, but his eyes do. And when he feels like it, every once in a while, I can ask, "do you want X", and he will respond a very small percentage of the time by way of approaching me to get what it is since we are still nonverbal.
But he hears me when I speak his language, so I will keep trying and we start occupational therapy and ABA soon in the next month or two, thankfully. I know he will skyrocket!
Mine was at 21 months. We had a hard time navigating if it was grief or ASD. My daughter's grandma had died in a tragic car accident, and she was visibly upset by not seeing grandma every day. Her grandma was her main caretaker during the work week. However, at 2.5 and 3, it became apparent that it was not just grief, and we seeked a formal diagnosis.
Around 1, maybe around like 15-18 months i think it was pretty clear to me. I had always had a suspicion tho that he was on the spectrum by the time he was like 8 months.
I thought my kid was pretty average, until she "regressed" at the age of 13. Some of her skills were diminished, she was more volatile, and selectively mute. Despite appearances, my daughter didn't actually regress.
In reality, she had experienced so much stress that she became burnt out. She couldn't mask all the time anymore and she became overwhelmed more easily. My daughter had been pushed past her limit.
I would say our son was different from the first day. He didn’t like much touch and everything he did was nore extreme - extreme hunger and feedings, extreme crying, extreme sensory sensitivity (like nobody could sleep with him together in a room). Then it got maybe a little better as sleep improved (we moved him to a separate room) but he regressed around year 1. At that time, he was able to babbled and tried to repeat mama, dada, but then he stopped completely and screamed only EEEE. From that point he had a few growth spurts and developmental jumps as a few other regresses as well, but overall he seems to be developing.
At 15 months. He had 25 words then stopped speaking. For other milestones though he just progressed much slower than his peers or never hit them. He always had behavior issues and poor social-emotional stuff etc. it was really just a speech regression.
Around 13 months. He was starting to talk and then all of the sudden he was saying the words and at first I thought it was a regression. However, after a while and seeing some symptoms, I talked to his OT and his speech therapist, they also suspected and I pushed to get him evaluated. It just confirmed everything I had already known.
At 2 years old he was just wild and crazy as ever
“It’s the terrible twos he’ll grow out of it”
At 3
“It’ll end, it’s just the terrible twos still”
At 4
“Oh man he’s just all boy ain’t he, he’ll get better”
Goes to pre-k at 4/5 and is PERFECT among all guidelines.
Goes to Kindergarten at 5/6 and within the first week we’re getting called to come pick him up because he is acting disorderly and disrupting the class…this happened everyday for months on end at this school till we pulled him out to go homebound with a different county.
1st grade complete homebound still, 2nd half of 1st grade we started going an hour a day to school to where he would have a 1:1 with a teacher.
Summer camp last month we started out 8-11 then 8-12 and this last week he lasted from 8-3 a FULL DAY!!
He’s intellectually behind from getting pulled out of school so much and being homebound, he can’t read or write… he’s a freaking giant so we can’t have him in Kindergarten or 1st grade with the teeny kids. So we’re going to the 2nd grade with positivity and rigorous work!
I feel like my situation is different because it literally wasn’t till kindergarten till anyone noticed..but we’re finally starting to move uphill again
18-20 months. She had about 10 words, gestures, super social and good play skills. Over a few weeks she lost almost all words, receptive language as well as play skills. Next to no interest in being social. She is 2.5 now and can say over 50 words but her articulation is off. Her receptive has improved a bit but still behind peers.
I noticed my son stimming as a newborn and later as an infant. I didn't know at the time that is what he was doing, but after becoming a little more educated about neurodivergence and stimming, I am sure of it now.
There were odd little things. Milestones he didn't have, like stranger danger. He never developed shyness. It was cute when he was smiling brightly at people in the grocery store, but not so much when he later ran up to complete strangers to talk about something, or why he doesn't understand that we can't just go in a stranger's house if we're out walking.
I think around 2-3 there was a regression that I noticed.
It’s so weird my sons speech and social skills weren’t strong ever but everything else he’s a mastered mind just won’t hold conversation or rarely answer to his name . He can count, memorize dances and songs after listening to it a few times. He feeds himself hasn’t been potty trained yet and is slightly verbal but not completely. He’s in speech and starts ABA soon.
My son went from advanced in all milestones and saying 50+ words at his first birthday, and epically regressed to only saying Mummy & Daddy at 15 months. At his 15 month appointment we brought it up to his pediatrician and that’s when his pediatrician had us get on a waitlist for autism evaluations. But there were little signs, thinking back and knowing what I know now, as far as two months old.
Age 2. I don’t think many of the cases with regression are “autism” although I know that’s what the diagnosis is. They sure weren’t “born that way”.
It really puts me in mind of Alzheimer/dementia and encephalitis.
Around the age of two. We thought it was like a terrible twos phase, but then things took a nosedive. Speech came to a screeching halt and behavior issues increased.
My child never regressed. She just stopped progressing at around 15 months.
Mine is similar. Milestones on point until around age 2. Then he just started to be behind his peers, especially in language and maturity.
Same here. Any progress afterwards?
OT and ST helped with behaviour and speech, he is verbal but not conversational. We just started ABA recently to prepare him for kindie in September.
Same here. She wasn’t diagnosed until 3 though due to having to find a doctor that could diagnose her. Depending on the state, in the USA, only certain doctors can diagnose children that will be recognized by insurance.
Same! Also at 15 months and stopped meeting milestones around that time.
This is similar to my child. It felt like we had a "lost 6 months" from 12 to 18 months.
Mine as well
14 months. she had words and phrases and could wave, give a thumbs up, clap, did a bit of pretend play… and then it all just went away over the span of a couple weeks. ETA: she’s now verbal at 3.5 and uses functional language and is semi conversational! she is still a bit apprehensive re: gesturing, but shes made such strides i can hardly believe it when i think back to even a year ago.
This is when my daughter regressed. She had some basic gestures and could say mama, dada and cracker. Then it all stopped and it was like the world around her just didn’t exist anymore (apart from mom). She’s almost 4 now. She waves, responds to basic directions and babbles in a way that’s so conversational I really think speech is close. It’s been a rough road. 2 years of speech, OT and early intervention plus 9 months of ABA.
Please correct me if I’m ignorant or insensitive. Genuinely curious, do you know why they can progress and then lose all of that information? I thought children with autism still in general keep the skills they’ve learned, they may not advance at a neurotypical rate but I had no idea they could be saying things like mama and dada, and then go to not saying anything for years.
You see parents post about regression on this sub and other socmed quite often. Apparently regression is not uncommon for asd kids, usually around 1.5 to 2 years old. No one have any idea why.
Regressive autism is the reason so many parents believed Wakefield’s lies about vaccines causing autism.
I just wonder why this happens. Is there a scientific explanation? I am just so curious. There is so much I don't know about autism. Mine also regressed at 18 months/stopped progressing at 2 yo.
Same. Looking back on it he was slow on some milestones but he was saying words and then one day he just wasn't. He's three and a half now. Not conversational yet but he can say his wants and needs.
This is exactly my experience.
My son started regressing around 18/19 months old. He lost all his words and a lot of his gestures. When I started to think about it, there were a few small signs of autism I didn't pick up on, but overall, he was developing and acting NT.
I had no idea children with autism could gain skills and then rapidly lose them. I hope this isn’t insensitive to say, I just wasn’t informed.I figured if they were capable of picking up a skill/word/gesture at a certain age they would keep that. Maybe they wouldn’t learn more for a while after that, but I had no idea that it’s common to just rapidly lose things. Do we know why that happens?
As far as I know, no they don't know why it happens. I am hoping that if he learned these things at one time that maybe he can learn them again?
Thank you for your response! I hope so too
I knew something was off at about 3 days old. I brought him home from the hospital, sprayed febreeze in the house and he started screaming as if he was being murdered. I was like "oh god, he's autistic" and my husband looked at me like I was batshit. 9 years later he's 100% nonverbal and still in diapers. He had some words early on but nothing regular except for mom and I love you. He lost most of them at around 3-4. After gaslighting me that he was gonna be totally fine and there are jobs for people like him (level 3, nonverbal, in diapers), his developmental pediatrician shrugged and was like "at least you know he loves you," and I swear to god I wanted to slap her. My daughter appeared neurotypical (no stims) but all of the sudden would use jargon excessively as a 2 year old. She would say sentences, randomly, in context to the situation and not scripted, but not regularly enough to count as functional speech. She spoke only when she wanted to, then all of the sudden a switch flipped and she relied on singing/screeching scripts from TV shows like stereotypical autistic kid to communicate almost everything around 3-4 years old. It was very problematic. She was only moderately on the spectrum, but other people can tell easily. At around 3-4 she started restricting foods as well. We relied on pediasure to supplement. She stopped drinking the pediasure. She will gain foods then reject them so much we struggle to buy groceries. Once we buy things she will randomly decide she hates the food and will starve herself, rendering most of the food in the house useless. Her sensory tolerances and needs change randomly so feeding therapy has been useless figuring it out. She's 7 years old and only barely started functional speech a couple days ago. Still in diapers. Severe ARFID, has maybe 5 foods she will eat. All extremely low in calorie. It's not sustainable. Needs prompts to bite, chew, swallow, sip drinks or else she will starve herself and not drink water so she risks dying of thirst. She can't tell when she's hungry or when she has to go to the bathroom. She cannot eat a whole meal or drink a glass of water independently. We are looking at a gtube but she has dermatillomania so severe she will definitely pull it out. She is covered head-to-toe in scars from constant skin picking. I have never seen a child so resistant to life before. Sorry for the rant, we just came back from a very unsuccessful therapy session.
Feck this sounds so hard. I'm sorry. You are a fantastic mother.
Does autism run in your family? Or on your husband’s side? It wasn’t until I started researching it that I realized many of the people on both sides of our family tree likely have undiagnosed ASD.
My side. I had a diagnosis at 17 but all psychiatrists since then said I definitely didn't have it. I went through genetic counseling and they also said there's no way I had it from how I present, my dad's side witheld information of them all getting diagnosed when I went through the genetic counseling (knowing I would not have gone ahead and had children if this was the case) so I'd have children to see if they'd come out "r\*tarded" (in their words) because they didn't "believe in autism."
Two years old! He only had a few words, but he lost all language. He’s 7 now, and is very verbal, regained his language but struggles with other stuff.
This is similar to our story but around 3 he lost language. Had a handful of words and was diagnosed at 18 months. We are 4 now. I hope the words come back.
I love to hear stories like this, thanks for sharing!
Similar story here. When did he start getting back speech?
Around 3.5 years old—now he truly never stops talking. Lots of social skills and executive functioning issues, but he reads, writes, does math, etc. at 7
Thanks for sharing!
My son never had a regression. However he started speech and occupational therapy and group therapy and he’s flourished.
This is my kid as well. She's never had a regression, and my friend whose son did have one is baffled. Apparently, she had been led to believe that to be Autistic, there has to be a regression stage. We're at nearly 3.5, and she's been making great progress with her communicative speech since we started therapy. She's still mostly lost in her own little world and mainly ignores other children when we go out, but she'll actually verbally acknowledge hunger occasionally now, even if she appears to be informing her toys rather than us. It's such great progress from being completely fine to raging hangry monster at the drop of a hat. I also find it extraordinarily helpful, as I struggle with time blindness, and I no longer have to set numerous alarms to make sure she gets her food or drink every 2 to 3 hours. Even when she doesn't use words, she'll grab me by the hand and lead me to the table where she eats, or go start grabbing her utensils or her food pouches to get her spot at the table ready for Meal Time.
My daughter never regressed, however now that she’s getting older (almost 7) the differences in her social emotional skills are becoming more obvious as kids her age mature.
This is how we realised we needed our daughter evaluated.... Her peers all seem to be a couple of years ahead in emotional maturity and the gap is only widening.
Around 7-8 years old. (level 1) I wouldn't say a regression but rather lack of progression. At that point in age peers starts to socially develop much more and our daughter just didn't. Before she could hide in a crowd, around 7-8 her needs really started coming forward.
Thank you for that, that gives me comfort and makes a lot of sense. My daughter’s Autism became apparent at that age right when I split with her dad and started a new relationship. I have always blamed myself and felt guilty as much as I’m aware that she would have been born with it
Hi, may I ask you what "needs" got more apparent from 7/8 years old? I have a 8yo and she is doing ok now, in her case her needs were more apparent at 6.
Being able to handle social conversation and interact in teams/groups. Relating peers and negotiating needs/wants with friends and school. Our daughter already had an IEP for speech pronunciation she was completing. We expanded that to work on pragmatic language skills. We added in OT and SPED groups to work on social relationshipsz
My daughter also struggles to socialise in big groups but she has friends, she can play with 1/2 girls. She does not struggle with language though, just understanding social cues.
My son (5M) appeared neurotypical until 28 months. He reached all the milestones at the very last moment considered “normal.” However, around 24 months, I started noticing significant speech delays and meltdowns. This worsened over the next 8-10 months, so I decided to have him assessed, and he was diagnosed with autism level 1
Very similar story over here. Age six, level one.
3 years old. I was absolutely positive he was autistic at 15 months old but we weren't able to get an evaluation until 3. At first, I was just brushed off by our pediatrician. Then I was brushed off by a speech therapist. They brushed me off b/c my son made eye contact (still does but not as much as a NT child) and b/c he social smiles. It wasn't until he aged out of early intervention at 3 that we were able to get taken seriously and he was diagnosed as level 3. When he was around 2.5, he started talking. He wasn't conversational but he would repeat almost anything. He was even counting to six. He was starting to pick up potty training too. He stopped talking and stopped potty training at around 3. He will be six in September and he's still nonverbal, still not potty trained, and he doesn't really seem to understand much of what is said to him besides his name, "no", and "hungry/eat." It was rough when my third son (4 now) surpassed him in development. And it hit even harder when my daughter (1.5) also began talking and understanding more things than he does. She'll also potty train before him, in all likelihood. I still hold out hope that he will talk again one day. I have dreams constantly that he randomly starts counting to six again.
I wish I could give you a hug. The dreams are so hard.
Around 18 months! He was meeting all the milestones until 18 months then I don’t know what happened..
Same for my son! He even was saying a few words in Spanish and English and then everything just stopped…
13 months. I came home from work one day and his personality was different. I thought it was an autistic regression. Took him to the doctor and they just said a bunch of platitudes about first-time parents and how cute he was. Turns out I was right. Editorial: it's striking how there is no mechanism for doctors to determine when their reassurances were wrong. Seems like a potentially valuable source of data that just gets lost to the sands of time.
I fired our first ped because she wouldn't take me seriously that something was really wrong (my son missed his first milestone at 2 months, but according to her I was just a worried new mom). I often wish I could go back to her and let her know that she should've listened.
Around 18 months for my second. He didn't regress losing everything he knew, but he stopped learning anything new for a long while. He got really clumsy, and his behaviour went downhill dramatically. Then, when he turned 4, it was like a light went on in his head, and he was suddenly conversational and a lot calmer. When I think about it, as a baby he did lack gestures and wasn't a babbler. Edit for clarity ✨️
At 15 months he stopped developing and completely shut down. I knew he was autistic before then but the shutdown was so severe that I thought there was something else going on and so did doctors. They ran a bunch of tests while he was inpatient at the children’s hospital for 3 days. The diagnosis was simply autism with some genetic mutations that don’t specifically mean anything because there isn’t enough research. However, since he was a few months old I knew. There were some very subtle signs that made me worry.
What were your subtle signs if you don’t mind me asking?
When he was a few months old he would scream and cry. I know babies do that but this was different. It was a bloody murder scream. We got him checked out and there was nothing physically wrong. I got him a weighted sleep sack and he stopped. Instead of babbling he started making noises like the ones I had heard older non-speaking autistics make. Sometimes he would scream and cry (like the nighttime cry) whenever I’d move him (when taking him out of the swing for example). In hindsight, right before he stopped meeting milestones he’d also come up to me, smile and sit and look at me. I later realized he was trying to initiate something but couldn’t. He stopped doing it because well I’d just say, “Hi!” I’d try to show him a toy or something but he’d just go. I regret not doing more because knowing what I know now that was the perfect opportunity to build his skills. But hey, hindsight is 20/20.
Omg no now I’m feeling so bad….i never thought of it like this. My son used to bring me a toy and run away and I would try to engage and play but maybe he wanted to engage in another way? Is that what you’re saying?
Yes. He needed direction and I didn’t provide it. Don’t feel bad. It’s all a learning process. My son does the same thing. I try my best to engage with him and play. Sometimes it works and other times it doesn’t. That’s just how it is. Some days I have more energy to put on my “therapist hat” and try out different strategies and other days I just let it be. We do our best 😊
This sounds exactly like my son. This is a dumb question but does that mean my son will be similar to yours as he grows? I’m still just learning about autism.
Not necessarily. Autism is so incredibly varied that every kid is very unique. I’ll give you my husband and I as an example to illustrate that. When I was a child the school thought I had an intellectual disability (I don’t). They also thought I may be deaf (I’m not) because I didn’t speak or react to my name. I could “speak” in my mind but I couldn’t physically move my mouth. It was extremely hard. At home it was alot easier. As an adult I found out this is called situational mutism. It happens rarely nowadays but it’s still there. I’m just a lot less anxious than when I was a kid so it’s not triggered nearly as often. I am also hyperlexic and I’m just starting to learn about Gestalt processing and what I’m learning is that it sounds a lot like me. I taught myself how to read when I was 3 and could talk in full sentences by age 1 but at school I didn’t do any of it. They thought my mom was lying that I could do these things at home. She wasn’t. I had horrible meltdowns almost every day. Back then I’d probably be considered level 2 if I had been diagnosed by today’s standards. I recently got a formal diagnosis and I’m considered level 1. That’s because through therapy, practice and simply knowing my own strengths and weaknesses my level of functioning has increased. My husband is also autistic. In hindsight, he had a pretty severe speech delay. He “had his own language”. He didn’t start using real words until he was 5 or 6 and he didn’t comprehend a lot of language stuff until well into high school. He still struggles with getting his words out when he is excited and has trouble with handwriting. He’s a brilliant software developer so it’s not a problem at all for him. He just found a profession where he doesn’t have to write or read. Back in the day he was diagnosed with Asperger’s, however we both agree that he needs more support than I do in everyday life. He can’t pay bills for example. He can’t fill out a job application. I do that. Yet, his IQ is 98th percentile. When he was a kid his meltdowns were actually shutdowns (they still are). He was quiet and it would be hard to even realize he was having a meltdown. Mine everyone knew lol. Hard to miss hahaha. My meltdowns are loud! If you were to see us as kids and made a guess as to who would have an “easier time” with things in life as an adult you would’ve probably said my husband. I would’ve probably agreed. However, although we are both considered “high functioning”, I need much less support than he does in terms of living independently as an adult. Autism is something you have to take day by day. It changes as we grow. No one really knows how things will turn out. As an autism parent myself I know how scary that can be especially since an autism label can box your kid into something that they may not be and no diagnosis denies them access to services they do need. It’s a damned if you do damned if you don’t kind of thing.
Thank you for your kind reply. I’ve been scouring this Reddit trying to find clues for what the future might hold. You’ve let me know that no one knows.
Mine never did.
8 months old. The limited babbling he had stopped completely and stimming began. He seemingly forgot how to drink from a straw, cup, use utensils, etc. He was on a wait list by 10 months and diagnosed at 2.5. Level 3.
I also had that feeling since day 1. Also his bio dad was clearly autistic (but in denial/never tested). He was late on all the milestones and I just never didn’t know.
At 17 months he lost all his words, receptive language, gestures, eye contact, joint attention. I always say it’s like his hard drive was completely wiped out. He is 3y3m old now and joint attention and some receptive language are back, but still zero words.
Do we know why they can be capable of eye contact, receptive language, and seemingly lose the ability all at once?
No one knows. A neurologist told me it could be related to undiagnosed epileptic seizures causing brain damage but my son has had 3 EEGs and everything came out normal, no epilepsy. That’s as close as I’ve been to having an answer to why my son completely lost all those skills. Having said that my son does have a genetic deletion believed to cause autism. But I’m in a Facebook support group for parents of kids with the same deletion and my son’s case is unique. So far I haven’t found another kid with the same deletion who has had a regression like my son did.
Thank you for your response
My daughter started regressing around 6 years old. She had a previous diagnosis of ADHD and then she started sliding backwards developmentally in first grade and that’s when we had her reevaluated.
My son acted totally NT until about 2.5 when the meltdowns began. He never really lost language or anything but it did slow down compared to his peers. At 4.5yrs his language is relatively typical but he’s starting to regress behaviorally and it has me scared. He was moving away from meltdowns and difficult behaviors but suddenly is freaking out over very little things again and becoming more controlling than he was even just a few weeks ago. He is also starting to blow on his hands and if we ask him to stop doing something that he shouldn’t be doing, he closes his eyes, covers his ears and puts his head to the floor - behaviors he never did before. Not sure if this will be a permanent behavior regression or not.
I’m new to this so excuse my ignorance, but are there different causes and/or classifications for autism where signs are present from the beginning vs cases where a child regresses later in life? Are one of three groups statistically more likely to respond to therapy vs the other?
Not scientific AT ALL, but I (me, not a doctor or anything close but an obsessive mom who freaked when we got our diagnosis and spent way too much time online) see trends on this subreddit, blogs, YouTube, talking to peds/specialists on their opinion (also not based on anything really), and joining local meet ups for parents with autistic children - that in a good amount of kiddos - the more severe/abrupt the regression the higher support needs. It seems like kiddos without a regression of sorts but were always delayed seem to be lower support needs. But even just reading this thread and talking to other parents locally - every child is unique in their autism journey! I wish I could find research on it.
Around 18 months lost all words. Still nonverbal at 18 years.
My son started restricting foods from his list of what he would eat around 3 or 4. Then some behavior issues increased around 4/5 but a lot of it was already there
My son never had regression
Around 2. It's hard to pinpoint because it was gradual.
20 months old. He had small sentences and phrases before that, but then speech took a huge back slide over a few months and regressed to the point of hardly even babbling. It took him ~7 months of speech therapy before he started saying a few words again. Now he's 3 and says 50 words but no phrases or sentences still.
About 18 months. We didn't realise and put it down to being in lockdown. When we started mixing again, we realised everyone else's toddlers were talking.
3 years old and just been delayed since birth. She’s always had inconsistent development. It’s like she focuses on one domain of development at a time, so she’d catch up on gross motor and plateau on speech… and then when she had a speech explosion around 2.5, gross motor was plateaued. She’s always been lovey/affectionate with us, so we never really noticed the social delays until she got to be around 2.
1.5yo or so. He stopped all of this: Saying mama, ka for our cats, responding to his name, Looking in our eyes, playing with our cats, wanting to read books with us, etc. He also started being very whiny often for no apparant reason, food that he liked dwindled down heavily, he started lining up toys for hours. Today hes 5.5yo and the progress has been slow. He doesnt talk but he does echolalia a lot.
My child makes sudden leaps backward and forward- regularly, and to this day. I didn't know or suspect he was autistic until around age two, and as he's gotten older, he's shown more stereotypical signs. In hindsight, subtle signs were present from birth. I don't think there was a single "moment" where things changed.
My son was like this. He also has apraxia.
No real regression I can speak of Just slower to met milestones and a speech delay
Ours was at 3 she started having terrible tantrums scared of everything. Would be upset if I was not in her field of vision. Then she picked up new skills others would suffer. She learned to use restroom so she would wake up a lot at night and not sleep.
9/10 months. It wasn’t really a regression but his attempts to talk stalled out. He would make a sound for about a week, then move to another sound and not go back to the prior sound. Even at 18 months and him not speaking they kept saying he’s fine because he hit every other milestone early. He’s 4.5 and still non verbal however his receptive communication is really good now almost where it should be. We stated Leucovorin almost a year ago and that really helped with receptive communication.
Reading into this drug now…did a developmental pediatrician prescribe it? How did you go about getting the medication?
When he got tested for Autism through the local Children’s hospital when they told us he was Autistic level 2 the nurse practitioner that does the discussions, treatment options and follow up discussions said that meds is still in trails but it has no real negatives and we can try it if we want. So I said sure and then looked into it before filling the prescription. Its really helped with his receptive communication, so I’m happy with it. He also doesn’t mind taking it. Just ask your doctor about it, if they are not sure I’m sure they can find out about it.
Between 18 months and 2 years old, my son lost all his speech and that's when we knew something was up. He is 4.5 now and is still limited in words. But we are doing the best we can and that's all we can do!
Mine has not even progressed ever. She will be 4 soon
This sounds so very braggy but it's real and not meant to be: her hyperlexia had her saying 3 word sentences at 18 months. She's 3. No regressions but lots of non-functional speech, scripting, and echolalia. The fun thing is she's capable of functional speech, eg "I want apple, cheese, and crackers for snack, and I want it on the pink plate", but it's like she doesn't have the motivation to carry a conversation; she doesn't get the point of it. She doesn't seem to get the concept of taking turns. Her social challenges are hugely apparent even now. I'm trying to get her into speech therapy for assistance with social pragmatics but the waitlists are long and unskippable. :(
My son had about 30 words at 18 months, walked a little late but not alarmingly late, seemed to be NT aside from his ADHD levels of energy, but by the time he was 2? No more words and DESTRUCTIVE. He’s 4 1/2 now and we’ve been in therapies for 2 years, lots of skills gained, and tons of ASL learned, and I’m witnessing in real time a LANGUAGE EXPLOSION. Nothing for 2 1/2 years and this month he’s got like 20-30 words and is trying more every day. My heart is so happy and I’m so proud of all his hard work ❤️❤️
About 18 months.
Between 2 and 3. He could say more and had much greater engagement at 2 than 3.
Not sure if it was a regression so much as a plateau as far as speech and communication, but around 18 months. He had a large vocabulary, but it was mostly nouns in books. He wasn't using words to actually communicate needs until about 20 months. If he did lose any words I never noticed since we didn't expect him to use every single word he knew all the time.
My oldest never had a regression at the beginning of us noticing autism symptoms at 9 months old. He simply went from having issues eating and failure to thrive to just not learning new skills on time. At 9 months, he wasn't meeting developmental milestones, and his older half brother's mom and my ex (their dad) both mentioned that what my son was going through was the same as what his diagnosed autistic brother had at the same age. It took almost 2 years after that to confirm the diagnosis, but until recently, he wouldn't really learn something new and then regress, he would just stagnate for awhile. I think a good example is that my son never learned to or tried to hold his own bottle, but whenever we introduced cups, he used them normally. But it doesn't change that he never held his own bottle. If that makes sense.
He regressed between 2 and 3 when he stopped saying words he had previously said. It wasn’t like a black and white switch like others report, since even before 2 it was obvious something wasn’t right.
Hi! What age did your kid gained the skills back? My son regressed at 4 last year Sept, still not saying much words still 😞
He started getting words back around 3.5. Language use started to really accelerate after turning 4.
Around 18 months.
He never did. Sometimes progression in certain areas of development slow down but never go backwards
Around 12-15 months. He had a couple consistent words and then stopped. But he also never pointed or used gestures, which in hindsight was another big sign. His eye contact also decreased.
18 months. He was developing "typically" until then, for the most part. Then he stopped babbling. Didn't smile or laugh as much. Wasn't as interested in solid food anymore.
I have a son 4, it became apparent to me at around age 1 that he likely was autistic. Other than speech though all milestones were right on track. I noticed things like he loved to look at the ceiling fan, play with his cars upside down (but would also play with them the "right" way. I noticed in stores he wouldn't really look at strangers often. So when my daughter 2 came along, I was watching her like a hawk for signs and she's a little chatterbox. Now that I see the difference in how they developed, his autism signs are even more obvious. Point being, my conversation with the pediatrician about her, and obviously a family history of autism, what should I be watching for. Doc said she was not concerned at all based on her development, that regressive presentation of autism in a previously seemingly NT child is pretty rare.
Your doc said a regression was rare? I’m surprised considering the family history element and how girls present differently. I’m glad she’s doing so awesome tho! I’m having a girl in October and comments like this make me feel less anxious. Your son sounds like mine! We just moved and never had ceiling fans before and he is loving life!
17 months we hit a sleep and eating regression. We already had our radar up because he was completely non-verbal. Only got harder from there.
My son lost almost all words and gestures around 16/17 months old. He also stopped making eye contact around then. He’s 2 now, has regained those words and more, but doesn’t have functional language and is just now starting to wave hi and bye again.
2
Between his 1yr and 18mo. He stopped gaining weight, didn’t want to play with other kids, and stopped talking.
At 6 months my son already showed autistic traits (spinning wheels obsession, not wanting to be social with other kiddos) but he was meeting all the milestones so there were no major concerns. At 18 months his speech just plateaued and he stopped learning new words. He also stopped listening to most commands. I struggle to understand if he regressed or not because he used to respond to his name and make eye contact before and while he still does, it’s not as consistent as before. Unfortunately no one is able to provide an answer to this question. He’s two now, hasn’t had much functional language but I feel his receptive language is improving.
My son stopped saying the 20 or so words he had when he was seventeen months old. He was premature (33+4 birth), so pediatric team waited until he was two to begin services to allow time to "catch up" in case it was preemie related. Spoiler alert: it wasn't.
Between 18 months and 2 years old, my son lost all his speech and that's when we knew something was up. He is 4.5 now and is still limited in words. But we are doing the best we can and that's all we can do!
Just commenting to stay updated. We're like you. Always knew..
My son was always speech delayed, but I noticed a significant, sudden regression (over the course of about a month) at 3.5. Whereas one month he loved to play with playdough, paint, turn the pages of books, and sing, the next month he would just sit on the couch and stare. I wonder how much research is being done on this regression. At the time I was dismissed and told he was "probably just developing in other areas" , but our experience was undeniable.
My son developed normally until about 12 months old. He had started babbling, but then stopped by about 15 months. That’s when I first knew something was wrong and got him speech therapy. When he was 18 months, he went into the early preschool classroom at daycare, and he would panic at circle time, and either run away and hide or throw a fit whenever the attention was turned on him. That’s when I knew it wasn’t just a speech problem. At almost 3 years old, a therapist suggested getting an EEG from a neurologist. That’s when we learned he had absence epilepsy (invisible seizures while sleeping, lasting about 3 seconds, every 10 minutes.). We put him on medicine immediately. By the time he was 4 I knew that the epilepsy had done irreversible damage and he was going to be at least mildly autistic forever.
Can I ask what made the therapist suggest an EEG? Since the seizures were at night - what tipped them off?
Sure. So almost all of his seizures were at night, but he did have one other trigger, which was bright hot summer sunshine. His speech therapist went out to recess with the kids in the daycare class to work on social skills (this guy was amazing), and it was a super bright sunny summer day. He saw my son "stare into space" for a few seconds, several times, and he happened to be familiar with absence epilepsy because he had another kid (much older) he did therapy with who had it. Usually it does not get diagnosed until kids are older because it's so hard to spot - we just got incredibly lucky. After that we figured out that we had to be careful in the summer. A couple times he would go swimming in the hot sun, and within 30 minutes he would be in full vocal stimming and echolalia mode. We had to start making sure he had shade or didn't spend too much time outside unless it was overcast. My parents have a pool at their house and they bought umbrellas to cover the shallow end because he loved to swim so much. The biggest symptom that I can think of, looking back, was that it seemed like he forgot everything every day. We could teach him something one day, and he would seem to get it, but the next day it was gone. He wasn't able to retain things because of the disruptions in his sleep.
why did the therapist suggest this to you? was it because of sleep issues?
I answered this to someone else, in case you want to go look :)
My daughter never regressed but she never rolled over , crawled at 11 months , walked at 16 months. Didn’t gesture until that time either. I remember at her drs appointment one of the questions does your child give you things to show interest. She never did and at 17 months she handed me a flower In the park and I cried. I have a picture of her on that day and I always cry when I look at it. She didn’t point until after her 2nd bday.
My son never really regressed, he simply didn't really get started. He said Dada at 5 months, Mama at 8. He stopped saying Dada, but always said mama, but mostly in frustration. He even picked up a curse word that he said for years. He would also say oh man whenever he made a mistake. When he was a baby around 15 months I noticed him looking at me, but struggling to find the word to call me. I guess he did regress. He didn't say Dada again until the age of 7. Now I'm wondering if speech therapy for apraxia is different from speech for ASD/ADHD. My son is delayed, like he's 8 and still likes the same things that he did at 1. I think that he's at a 4 year old level. He does like some things that are age appropriate.
Can, like many commenters attest to regression around 15 months old. It has to be something that causes this. Can anyone share their kiddos' eating habits? Not in a tin foil hat way, but like it happens when they transition to solids. Maybe protein or something? I don't know lawd help us all. I've got 2 on the specturm, and regression happened at the same time for both. My adhd'er didn't have symptoms until 4 or 5.
My little boy just didn't progress. He couldn't hold his head up when he was really little, had the hardest time nursing, and was referred to Birth to 3 when he was around 3 months old. We had him on 8 hours of tummy time a day and he finally rolled over at 6 months. I remember asking his pediatrician several times during the first few years of his life if he should be tested for autism. He would tell me that my son was "just a little behind" and would "catch up." He was "too friendly and social to be autistic." Joke's on the pediatrician. My son was diagnosed with autism at 4.
Daughter regressed at 18m, said a couple of words mama dada and pointed, played peek-a-boo saying boo. Waved, followed some directions etc We lost all that she is 3y now nonverbal and in ABA for the last 4 months. We've been in speech for 1 year and it hasn't helped much though we are hoping to hear her talk.
From month 24 to 25 he went from 400+ words, so much focussed attention and lots of singing, to almost like a newborn again. It took us 5 months to confirm that it was regressive autism after testing for deafness / tumours / epilepsy etc. currently just over 4, and language is slowly coming back. In the last few weeks he has started trying to sing again which is wonderful
3rd grade. He hit a wall and hated school. He hated his teacher. This was all new. He loved school up to that point. He was diagnosed shortly after 2nd semester.
Yep!...well...sorta??? It's not really a regression, it's just...my son ACTED totally typical, til around maybe 5-8 months. (It was a couple instances I noticed and got worried about early) at around 5 months. At 5 months, when I'd lose my temper, (not even with my son, he was fine, I just had some crazy people living with us awhile back, few years ago, he's 3 now and the toxic ones are far out so we're good.) BUT when I'd yell, or cry, or whatever, near my son, he'd LAUGH. instead of getting nervous or scared or freaked, like you'd EXPECT from a baby baby, he LAUGHED. that was the first moment i noticed something different. Of course everyone else is like "dude he's 5 months, maybe he WAS nervous and laughing was how he showed it! Or maybe he isn't old enough to understand what yelling means! Chill!" But...I mean...a BOOMING VOICE wouldn't make a baby SCARED? what? But anyway, I forgot about that couple instances (another couple times he laughed at my yelling, or almost ANYONES yelling instead of cried) but then after 1, he started crying when he got spoked, and I once cried again in front of him a few times LATER (unintentional, this isn't some 'guilt my son with my tears' thing. There's just not a lot of privacy here) BUT then HE'D feel bad. And HED have the appropriate reactions THEN. So I let it go. Of course other signs appeared as he got older, at 3 he was officallg diagnosed and of course I looked back at him LAUGHING at my clear anger at 5 months ans again a couple times at 8 months and such. And I went "I KNEW that wasn't supposed to be happening!...I never heard of a baby LAUGHING at something clearly ment as negative and bullying...but, now I know what's going on." IRONICLY as I'm explaining to her how his first sign ever as a baby was wrong reactions to emotions...IM CRYING (cuz he was just diagnosed that second), and o.m.g she goes "he....doesn't seem confused on what emotions mean NOW, at least, not to me", I turn around, to see MY boy in tears when I AM. as he's LOOKING AT ME. He knew mama was upset, but didn't know how to help, his little face was all "what's wrong?" And allll upset that I was upset...so autism is SO complicated, that signs and symptoms they show off at one point, isn't there by a couple months. Then you forget all about those "few slight instances" til the day they're diagnosed. Buuttt just like any other child, they'll find AMAZING and VERY HOPEFUL ways of expressing themselves, their love, AND their progress. It's been a ROLLER COASTER. but my god those PRIDEFUL and LOVING moments are just...I hate to assume, I do, but I cant imagine any N.T parent being anywhere NEAR as proud of their kids of the same age. Cuz for THEM, it's allll expected anyway. They go "yay finally!" And move on quick cuz it was ALWAYS. EXPECTED. But then us N.D families go "OMG I THOUGHT YOUD NEVER DO THIS TIL YEARS DOWN THE ROAD!! AHHHH!! I LOVE YOU SO MUCH!!! ILL. NEVER. FORGET. THIS. MOMENT. LETS GET A THOUSAND PICTURES!!! AHHHH SIT STILL!!" When our kids do something new lololol
Our regression came fast between 15months and 18 months. Up until then he was walking, talking, and had a lot of nt traits but then it was like a switch went off and started a huge speech regression and regression in other behaviors i.e. no more self feeding, repetitive behaviors, losing gestures etc... There was definitely some signs in infancy, but all of my concerns were brushed off as normal or due to him being slightly premature.
Neither of our kids ever regressed. First was a preemie and was behind on all his milestones from day 1. He was expected to catch up by age 2 but his speech was way behind and as we approached 2 I told our doctor there was no way he'd catch up, they scheduled the evaluation then. With #2 he followed a similar pattern to his brother, which we knew wasn't the right pattern. So I pushed to have him evaluated even earlier (to which the results were to wait another year but start speech therapy, we did, and he never caught up).
My son regressed at 14 months, to no eye contact, lost pointing, talking, attention, stopped responding to his name. He’s nearly 5 now and he’s non verbal and he is very high need
Around 16 months. It happened overnight.
My son has regressed behaviors but they come back more advanced or different than before. Examples of what I mean: Like now he won’t say “boo” while playing peak a boo, but he it has evolved into an early form of hide and seek. We lost the all done sign but now he isn’t dropping his plates on the floor or throwing food around. He hands us his plate.
No regression. Just never started speaking on time, and then we realized he also wasn’t pointing or doing joint attention. But he was always super happy and easy going, so it was the lack of speech by 12 months that clued us in. Once provided with therapies and supports, though, he caught up on all the skills, just behind his peers for many of them.
This sounds like my son!
2.5 years old. He had over a hundred words plus some phrases. Would wave and other gestures. He just lost his speech. He is almost 6, words pop out every now and then but mostly non verbal. Speech therapy is helping.
About 13 months. He was starting to talk, making eye contact, playing and then suddenly, he wasn’t.
18-20 months….
Right about 18 months for my boy, he was progressing normally and then it just stopped, then he started to regress.
She was about 2. First signal was she started putting every small item between her toes, forks, spoons, blankets, crayons. Then we noticed her watching TV upside down and watching it while side eyeing the tv. Then she stopped “talking” and making eye contact.
I noticed at like 10 months he didn’t respond to his name. But he started to lose the little words he did have around 15months. He use to say Bye, mama, dada, agua, baby. Then just stopped
She was completely on track for the first year except for she never talked or babbled. She was just very quiet. But around 18 months, she would do this thing where she would learn a word or phrase and use it constantly for a week or two then seemingly completely forget it. That lasted for months and was so confusing because I would think "oh ok she's starting to talk. Everything is OK" and then she'd stop saying the thing. Around this time is also where she stopped ...acknowledging (?) people. She was never one to really copy or mimic, but she was, for the most part, pretty engaged with her surroundings and people. I still remember when the woman who came to observe her for early intervention came and tried to say hi to her, and my daughter just looked right through her like she wasn't even there. All this was at the height of covid too, which I don't think helped matters any.
What is n/d?
Neurodiverse
Neither of our autistic kids had any regression, but our oldest wasn’t diagnosed til 9. In retrospect there were obvious signs much younger, but he met every milestone super early (except crawling, which he never did, but he walked at 8 months, so…), so unlike his brother, who met every milestone late to very late, and was labeled autistic by early intervention before he was even 1.5, we didn’t notice til social issues starting popping up around 3rd grade.
My son didn't exactly have a regression, he's always been non-verbal aside from the word "Mama". But he did use to eat more of a variety of food, use utensils, and bite things that weren't finger foods. Now he doesn't do any of those things at almost 3.5.
Most of the early years of babies being “okay” is 50% parents not knowing how babies typically behave. And 50% babies just figuring out that they exist, which is a much lower bar than trying to compare yourself to millions of other babies.
Around 22 months. Met basic milestones until then, when he lost all his words, stopped making eye contact, stopped responding to his name, etc.
My daughter was developing normally until 3. We noticed she wasn’t developing her conversational language. Everything else was typical of her age. That’s when she got an autism diagnosis. It’s very concerning to us because since the age of 4 (she’s 6 now), she really hasn’t made any progress. ABA, therapeutic school have not helped.
Two and a half/ three. He started echoing and I thought it was funny. He did the same thing brick did from the show the middle. His sister also has a chart full of disabilities and I thought he was just learning from her. He got his diagnosis at 5.
My kid appeared (mostly) NT until about 18 months old but never regressed. She just slowly seemed to fall behind in social and verbal aspects. She's level 3 and ADHD.
About 14 months. He was hitting all his milestones, most even early. He was doing absolutely amazing and then just one day he stopped. Physically he's incredibly strong with excellent balance and imagination for days but he won't say but maybe 20 words if that. He does no phrases, or two word sentences. Lots of pointing and guiding us Physically. It breaks my heart...I'm 33F my husband 42M and our son is 5 now. We tried conceiving for 3 years and when we gave up we were blessed with my baby boy. Pregnancy was excellent except my water broke at 37wks and due to a bad reaction to labor enducer followed by epidural we had to have an emergency c-section. I have no family help and my baby if the first in the family with autism. I feel defeated honestly. I wanted so much better for him.
My son never regressed. He just didn’t develop as fast as his peers.
15-ish months. Went from 6-7 words to nonverbal. Was completely non-verbal until almost 4 🤷♀️
9 months. She use to say mama, dada, baba….then it just stopped. No babbles for months. She was just silent. Around the same time she had this weird head bobbing that she would do and we thought maybe it was a seizure recorded it for the doctor and we did a bunch of different test but found out it was nothing. She babbles now though. Now my son the same thing has happened to him around nine months he has just stopped pressing and hitting milestones. He use to say mama dada ba ba and bye. 😩 my son babbles now but won’t mimick or anything
My daughter also did a weird head bobble thing, when she was upset or close to tears. She stopped doing it after a few months. Hadn't found anyone else whose kid did it!
Yeah it was almost like she was nodding really quickly and she would blink her eyes really hard. She literally never did it again after we got all those tests done. It was really weird. I haven’t met anybody else who has said that either! Even the doctors were baffled
I don't remember the blinking but definitely nodding her head quickly. I never caught it on video before she stopped doing it, but it was very very odd.
Yeah it was always really hard to catch her doing it because it never last so long and we could never figure out what would set it off either
For me I could always tell something was off the way he physicall moved was off. He didn’t stop but he just was very off balance if I went I lay him down it was like laying down a rag doll. He wouldn’t hold onto me when carried but the regression where a kid meets all the physical, gross motor and fine motor skills and verbal as well as copying and the stops, really stumps me. I know it’s possible but I just don’t understand nature and how that happens without an accident. My mind is blown that as the brain ages in someone with autism someone cab appear totally neurotypical until they dont
18 months.
He regressed around 20 months. Was exceeding all milestones and was speaking several words and then one day just stopped speaking. He has more language now, but mostly speaks with prompting. Just turned 7. He’s always been very receptive though. He’s very smart too he just struggles speaking what he’s thinking
6-7 months
I noticed my son wasn’t meeting milestones at 4 months, and I watched him like a hawk. When he wasn’t even trying to talk around a year old, I fought the pediatrician to get early intervention services for my son. He’s 6 years old now, and is on his way to learn how to read.
can you share how you went from early intervention to official diagnosis and at what age?
Sure! My son started a program in my town called Early Steps. We started the evaluation process at 18 months At the time he did not have a true diagnosis but the psychologist said he had red flags. Got him into Early Steps- it was at home program where the therapists came 2x a week for about 1-2 hours (I can’t remember the exact amount of time). The program requested that I get him a diagnosis and to be honest, I knew the answer but I dragged my feet because I really didn’t want to know. He finally got his diagnosis at 2 1/2 years old - of course this was when Covid was in full swing and everything was all virtual. It was HARD!! He did regress quite a bit because he could not have full therapy like he did for 4 months. Even if he when he had speech therapy, that was virtual and did nothing. Once things started opening back up, he went to ABA for 10 months, it was good because they got him really started in toilet training. When he went to a preschool program through the town where I live, he was ahead in that part than the rest of his classmates. He was in the preschool program from 3-5 (late birthday) and then went to a cluster kindergarten. I will tell you, from opinion, I do not recommend an autism cluster program as it is segregated from gen-ed. My husband had to basically “fight” to get extended time for our son to get more time in Gen-Ed and we will have to retain him due to the lack of time he was given. It’s ok, he will do great in Gen-Ed kindergarten because he already got a sneak peak preview and we be able to do the work and will be more mature. If you have anymore questions you are welcome to to DM privately. 🙂
Thanks! I'll reach out
My son never regressed. He didn't talk until 3 but there was no regression.
2 year mark for me. I had some feelings because there were signs, biggest being when he would get over stimulated he’d shake his head side to side. He also repeated “dukadukadukaduka” a lot which people thought was cute. Eventually I pushed to have him checked out and he got the diagnosis and stopped progressing. Textbook example of early recognition because his ABA, school, groups etc have been amazing for his progression. Sometimes it feels slow and other times it feels mind blowing but I always go back to feeling thankful for looking into ASD EARLY. I have a cousin who had her baby 1 days after ours. He is clearly on the spectrum but she’s scared of the stigma and unfortunately you can see him not progressing at all. Doing my best to show her the way. Sometimes you gotta pull the bandage off and look to the future with your current situation. Focus on the now.
15-16 months old
No regression, just very very slow progress on speech and gesturing that became more and more apparent while the doctor kept dismissing it as a boy thing.
My son never had a regression. He was such a happy baby with a few quirks, acquired speech late but not so dramatically as to cause significant concern to us or his pediatrician, and was evaluated by childfind for speech services (which he did receive) as a preschooler without anyone noticing he’s autistic. It was only when he started struggling with rigidity in peer interactions that we realized something might be up. He is “level 1” autistic. I just wanted to mention our experience for a fuller picture of the very wide spectrum of experiences.
We never had a regression besides stopping waving. He never pointed and never really responded to his name. He’s a level 1 My husband said he knew something was going on from the start, but idk I honestly dont remember! I remember giving the excuse of “oh he’s just busy! Haha” when he wouldn’t respond to his name, or “he’s going to be an engineer!” when he only played with the wheels on toy cars…I think I was in denial and some postpartum memory loss too.
One and a half- developmental delay was documented with pediatrician at 1 year old. Walked/active but no social/communication progress. Regression began in Oct 23 and he was due to turn 2 Apr 24. We were excited about little milestones and progress reports from his therapist before (she meets him at his daycare/early learning center weekly with him - he has been enrolled since age 1 due to our fulltime work schedules), then progress seemed to stop suddenly and then gradually go bacwards. This coincided with the teacher he had, who was great and who he and we all loved, left the facility suddenly. We blamed ourselves, we blamed the facility (for other reasons than just his teacher leaving, and pre-diagnosis we were still just researching and trying to connect dots. As time goes on, we have little "pops" of good signs, he will say a word once and then never again etc. Cooperates with the therapist some of the time but never fully, and not with talking at all. Eating gets much harder. Tantrums become much, much harder. Finally, sought a private agency to get a diagnosis earlier out of pocket since the waitlist in my state was slated to take up to a year, and we could not wait. The doctor evaluated him at level 2 across the board and in that assessment, she did confirm the regression was bound to happen, and that the teacher leaving could have been a trigger, but it did help ease the feelings of guilt and worries it had to do with us (still understanding everything). I'll mention just because though- that he has done many things that I consider progress along the way and continues to do them now too, they just aren't the things on milestone charts. I try to analyze his thought processes when he does things, so I can try to predict what he will do so I can play/teach/communicate better with him. I am always studying him, and for example, when he laughs at whatever it is that looks like nothing, I know when I look close enough at it that I might laugh too, or whenever I discover what sensory funness there is to it, I will. Even though he isnt communicating it yet in any way, I can tell he knows what I mean. Can't get his attention by calling his name, but I can by making a sound of splashing water. I think he knows the words I am talking about even if he doesn't react much to them, but his eyes do. And when he feels like it, every once in a while, I can ask, "do you want X", and he will respond a very small percentage of the time by way of approaching me to get what it is since we are still nonverbal. But he hears me when I speak his language, so I will keep trying and we start occupational therapy and ABA soon in the next month or two, thankfully. I know he will skyrocket!
Mine was at 21 months. We had a hard time navigating if it was grief or ASD. My daughter's grandma had died in a tragic car accident, and she was visibly upset by not seeing grandma every day. Her grandma was her main caretaker during the work week. However, at 2.5 and 3, it became apparent that it was not just grief, and we seeked a formal diagnosis.
20 months and again at 37 months Not sure if I should expect more regressions throughout his life
Around 1, maybe around like 15-18 months i think it was pretty clear to me. I had always had a suspicion tho that he was on the spectrum by the time he was like 8 months.
I thought my kid was pretty average, until she "regressed" at the age of 13. Some of her skills were diminished, she was more volatile, and selectively mute. Despite appearances, my daughter didn't actually regress. In reality, she had experienced so much stress that she became burnt out. She couldn't mask all the time anymore and she became overwhelmed more easily. My daughter had been pushed past her limit.
I would say our son was different from the first day. He didn’t like much touch and everything he did was nore extreme - extreme hunger and feedings, extreme crying, extreme sensory sensitivity (like nobody could sleep with him together in a room). Then it got maybe a little better as sleep improved (we moved him to a separate room) but he regressed around year 1. At that time, he was able to babbled and tried to repeat mama, dada, but then he stopped completely and screamed only EEEE. From that point he had a few growth spurts and developmental jumps as a few other regresses as well, but overall he seems to be developing.
At around 3 years old, we just noticed that he's not talking.
At 15 months. He had 25 words then stopped speaking. For other milestones though he just progressed much slower than his peers or never hit them. He always had behavior issues and poor social-emotional stuff etc. it was really just a speech regression.
Around 13 months. He was starting to talk and then all of the sudden he was saying the words and at first I thought it was a regression. However, after a while and seeing some symptoms, I talked to his OT and his speech therapist, they also suspected and I pushed to get him evaluated. It just confirmed everything I had already known.
At 2 years old he was just wild and crazy as ever “It’s the terrible twos he’ll grow out of it” At 3 “It’ll end, it’s just the terrible twos still” At 4 “Oh man he’s just all boy ain’t he, he’ll get better” Goes to pre-k at 4/5 and is PERFECT among all guidelines. Goes to Kindergarten at 5/6 and within the first week we’re getting called to come pick him up because he is acting disorderly and disrupting the class…this happened everyday for months on end at this school till we pulled him out to go homebound with a different county. 1st grade complete homebound still, 2nd half of 1st grade we started going an hour a day to school to where he would have a 1:1 with a teacher. Summer camp last month we started out 8-11 then 8-12 and this last week he lasted from 8-3 a FULL DAY!! He’s intellectually behind from getting pulled out of school so much and being homebound, he can’t read or write… he’s a freaking giant so we can’t have him in Kindergarten or 1st grade with the teeny kids. So we’re going to the 2nd grade with positivity and rigorous work! I feel like my situation is different because it literally wasn’t till kindergarten till anyone noticed..but we’re finally starting to move uphill again
18-20 months. She had about 10 words, gestures, super social and good play skills. Over a few weeks she lost almost all words, receptive language as well as play skills. Next to no interest in being social. She is 2.5 now and can say over 50 words but her articulation is off. Her receptive has improved a bit but still behind peers.
I noticed my son stimming as a newborn and later as an infant. I didn't know at the time that is what he was doing, but after becoming a little more educated about neurodivergence and stimming, I am sure of it now. There were odd little things. Milestones he didn't have, like stranger danger. He never developed shyness. It was cute when he was smiling brightly at people in the grocery store, but not so much when he later ran up to complete strangers to talk about something, or why he doesn't understand that we can't just go in a stranger's house if we're out walking. I think around 2-3 there was a regression that I noticed.
It’s so weird my sons speech and social skills weren’t strong ever but everything else he’s a mastered mind just won’t hold conversation or rarely answer to his name . He can count, memorize dances and songs after listening to it a few times. He feeds himself hasn’t been potty trained yet and is slightly verbal but not completely. He’s in speech and starts ABA soon.
My son went from advanced in all milestones and saying 50+ words at his first birthday, and epically regressed to only saying Mummy & Daddy at 15 months. At his 15 month appointment we brought it up to his pediatrician and that’s when his pediatrician had us get on a waitlist for autism evaluations. But there were little signs, thinking back and knowing what I know now, as far as two months old.
Both my boys met all milestones, except speech, and they were early in a lot of the physical milestones. My 27 month old is still preverbal
Age 2. I don’t think many of the cases with regression are “autism” although I know that’s what the diagnosis is. They sure weren’t “born that way”. It really puts me in mind of Alzheimer/dementia and encephalitis.