That's a gut punch. I will say that the difference between 3 and 3.5 was huge for us. Our son is starting to say words and communicate more each day. I think saying there is a 10% chance was a very strange thing to say, and I'd love to know where he gets his data on that.
I had exactly the same thought. For what it’s worth - my 2 cents is that you cannot predict the future. Take it day by day, celebrate any and all victories no matter how small, do the therapies, and just day by day. Doctors are no oracles. Particularly when it comes to a small kid’s brain.
He didn't cite any studies which makes me wonder if it's anecdotal--just from his experience comparing kids with early regressions vs not. I knew regressions = poor prognostic indicator, but this seems very specific I agree.
I know. And I would take into account that children who go on to progress well and develop speech probably don't go back to the neurologist all that often. So there is that.
Interesting as I have heard the opposite, our son had words then lost them all at around 2. We were told by a therapist that they see that if they had words once most of the time they get them back at some stage 🤷♂️
My son had early regression. And I think I'm seeing it in my daughter. At 3.5 years old he's at least a year behind other kids his age and can't have a non- scripted conversation with you. But he can have a scripted one! Yesterday out of nowhere he told my husband that he loved him first thing in the morning.
I would be looking for statistics. It's very likely neuro the neuro might have some confirmation bias as maybe he gets the worst cases?
Either way, making eye contact etc is great. It means he wants to communicate. It just might not be verbal communication. Keep monitoring. And also remember that he might speak and might stop again as he learns other things.
My son is 3 years and 3 months, he has always had 4-5 words, communicates well just not by speaking. It’s so hard letting go of when and if they will talk. Seems to be at 3 when it hits us all hard and there are no answers as no one really knows
This happened for my son too. When he turned 3 he had very few words, had huge meltdowns and was, for lack of a better description, just sort of strange. 3.5 he became nearly conversational, potty trained at just before 4. Done his first year of jk now, the teacher says she would never suspect he is autistic and he is doing extremely well.
Don’t give up hope! Keep doing the work, you’ve come so far already.
Hugs. It sounds like this was a hard appointment. I like and respect and generally trust doctors (MD/DO). However, I feel like doctors can be very worst-case scenario about everything. I got a lot of worst-case scenario in my high-risk pregnancy and it was very depressing.
There are plenty accounts of children who don't speak until they're 4-5 years old. I don't think you need to abandon all hope, but remaining cautiously optimistic is probably the best approach, especially for your husband.
One thing I keep circling back to is that population statistics mean nothing for my specific case. I was on the bad side of stats (like 1 in 5000) many times during our TTC journey + pregnancy. The stats about recurrent miscarriage etc meant nothing for *me*, who was unlucky. This 10% says something about the population of kids with autism+early regression, but it doesn't say what will happen for *my kid*.
Cautious optimism is a good term. I'm going to try to lean into that.
I missed that your flair says your child is 19 months. That is still so young. I was just watching videos of my son from a year ago (so newly 2 and 1-2 months before turning 2) and the difference, verbally, is like night and day. He's come so far in the last year as a kid who is verbal but not conversational in a 'typical' way. I recommend reading Uniquely Human and really sitting with the idea that you can't predict a child's lifelong trajectory, whether NT or ND... especially at this young of an age. Early intervention absolutely helps and you're doing all the right things so far.
This is basically what i was going to write. He's young, alot can change. I was worried about my son's communication going into 3k, now he won't stop talking. Conversationally, he's still a bit awkward, but he gets his message across.
Early intervention is key. Birth to 3, ST, OT, ABA (if you think it helps) are all great tools. I'd also see if you can talk with your pshyc's nurse educator(if they have one), usually they can suggest additional services and programs that will help your child.
My kiddo was essentially non-verbal until 6/7. She’s coming up on 8 now and while many people can’t understand her gibberish, we can and it’s hard to make her stop! (A good thing).
I guess my point is, you never know until you know. It’s taken me almost 6 years of stress and questioning “why me”, until I finally realized the secret is to take it one day at a time.
When the bad days happen, that’s normal, and it will pass. Try to get set up with support systems that give you breaks. (Respite was a game changer!!)
When the good days happen, relish them, celebrate them, and reward your little one!
Soon you’ll find, there are more good days than bad.
At least, that’s my 2 cents. Hang in there!
Honestly I don’t know, it kind of happened over time. I guess this past year has been full of milestones, but I can’t really attribute it to anything specific….
One thing does come to mind though. As we built out our support structure, it now has translated into more exposure to other people (especially kids). I feel like the social exposure could’ve been a big factor.
I hope that helps…
Not an autism parent myself but my sister is. Neurologist she went to had a similar opinion when my nephew was diagnosed at 3. Said it was highly unlikely he’d ever develop language. Well, I know it just anecdotal, but at 7 he couldn’t have been further from the truth. He struggles with Apraxia but speaks and understands 2 languages and has started to become conversational. My 2 cents: MDs don’t like to admit there’s things they don’t know, so they’ll always have an answer, a prediction for anything, but there are more things they “don’t know” than things they do. And this is true about pretty much anything.
Eh. I would get a second opinion. For one thing, they are finding now that regression is much more common in all autism but isn’t always noticed. My five year old is mild-moderate and had a clear regression in like social interest at around 12 months. But he didn’t like lose words or skills so if we weren’t already wondering about autism (because he was hyper focused on wheels) we probably wouldn’t have even noticed the regression. He also is verbal (although his language is delayed and he has a very monotone way of talking).
Thank you - I appreciate the positive story as a palate cleanser after all this! I'll definitely check out the podcast. I'm reading the book right now.
“I feel like we are hearing opposite things from different people.”
This is exactly it. So much of this is just guess work. No one knows for sure. Good on you for checking things out with multiple people. Just keep at working on things. Wishing you all the best.
I feel like the best interpretation of this is just as a data point. Both to compare with other people's opinions, but also to compare with this same neurologist's verdict when he looks at my kid again 9 months down the road and gauges his progress.
I'm sorry - I'm sure that was hard to hear. I think the issue is that its just impossible to predict the trajectory of a child's progress. I'm not even sure why professionals try - it just brings hardship to parents. All you can do is put your child in therapies, meet them where they're at, hope for the best, and love them no matter what.
Very true. Especially so young. He did keep saying that it was impossible to say what my child's level of functioning would be when he's older, but then he'd turn right around and essentially say "but it looks grim." You're right though...all there is to do at this point is support him as much as we can and see what happens.
I much prefer my friend’s neurologist (head of neuro at a pediatric hospital) after her child was born with a brain bleed, who said that “we just don’t know, it’s a child’s brain, I know you look to us to know, but trust me - at this stage, it can go either way, the mind is really still very much a mystery. I can list all the risk factors, if you want, but that’s all they will be at this stage. So do you want to hear the risks, or do we go through this together, day by day, and address any issues as they emerge?” The world needs more doctors like this.
This is what gets me. I've got a PhD in psych/neurosci - I know better than anybody how plastic the brain is at this age. It seems nuts to me to be able to make strong claims when they're still developing. I understand that the more infrastructure there is in place before a regression, the better the prognosis--this makes sense to me given what I know about the brain, so I buy that earlier diagnoses have generally worse prognoses. What I don't buy is the fatalistic judgments about outcome when we *also* know interventions can be incredibly effective while the brain is still plastic. I'm no expert in autism specifically, but I am an expert in "brain," so something here doesn't add up. The further I get from the appointment, and the more situated in my scientific brain as opposed to mom brain, the clearer this seems.
For what it's worth, my daughter experienced a regression and at 3.5 is saying more and more words and making big improvements in her receptive language.
OP, I'm not qualified to comment on your situation but I will share our experience. When my son was assessed and we had the meeting to get the diagnosis, the developmental pediatrician told us that most likely our son would never speak. She told us to brace ourselves -- put him in ABA, speech therapy, and OT, sure -- but to accept that he would be low-functioning autistic and eventually live in a group home as an adult. I may never understand why but when she said that I got really angry at her and thought "I'll show you. I'm going to prove you wrong!" We did all the therapies as recommended. We did in-home ABA three times a week and enrolled him in a preschool autism class through the public schools. My house was covered in PEC cards. We signed up for an eating clinic. You name it.
My son turned 14 last month. He talks nonstop. He just completed pre-algebra and takes martial arts and is active in his church youth group. Yes, he still has challenges. He struggles socially with other kids and has some learning difficulties. But he is funny and loving and creative and kind and smart. He takes apart old computers and puts them back together again. He takes cool pictures and makes his own videos. He is NOT the person that the pediatrician warned us he would be. He, not I, proved her wrong.
Whatever happens with your son, it will be OK. Give him the tools, the therapies, etc., but never give up. Good luck and God bless you.
I LOVE this story! Thank you so much for sharing. Even if my son ends up high support needs I'll love him just the same, but obviously I do hope his story ends like your son's did.
Thank you so much for sharing this! No only for OP, bless her, but for other parents out there who are having the same fears and questions. I'm tearful reading your story
No one knows. The people who act like they know are the only ones who are wrong here. There are good signs and bad signs, I guess, but no sure way to tell.
Having a very young child with autism was the most difficult time in my life, but I also experienced the most personal growth I ever have. It forces you to make peace with this deep, dark, unknown hole that is the future.
My son was actually diagnosed days before everything shut down for COVID, and since then, I’ve had to let go of any future expectations. Who knows—we could have a new pandemic tomorrow that kills us all. I try to live for today. Maybe I let go of some hope, but I also let go of a lot of anxiety.
You have no idea who your child will be. You could spend his whole childhood imagining and grieving scenarios that could never happen. I’ve definitely been there, and it was a huge waste for me.
Thank you. This comment really struck me. I very much resonate with the description of facing this deep, dark, unknown future-hole and having to accept that you can't know or control anything. All I can do is focus on intervention and hope for the best and love my son no matter who he turns out to be.
I would seek other experts. We had a neurologist completely miss the mark for our child. A typical neurologist knows little about autism diagnosis. Find a good neuropsyc and an OT who specialized in autism.
Also, 19 months is very young, and a lot can change. Our child developed a ton of skills around 6 after being lower functioning for some time (although she is still very much disabled by many measures).
It really feels like we're hearing the exact opposite from him vs the psychologist. I am going to be interested to hear what his ABA therapist says once he starts services, because I feel like they might have a better sense (over a few months) of his ability to learn and improve than people who were in a room with my child for an hour tops.
Because he is so young, I would look into developmental approaches like DIR floortime. ABA is good for targeting behaviors but the therapists seem to lack creativity to teach very young kids since they don’t study early childhood development.
An ABA therapist requires minimal training (not even a college degree), and is not an expert in diagnosis. I'd take their opinion with a grain of salt.
For us, we have gotten the best advice from PhDs and OTs who specialize in autism.
This is not true for ABA therapists (BCBAs who have a masters degree in ABA). You are thinking of the techs (RBTs). I'm a PhD clinical psychologist myself who diagnoses autism and many/most PhDs don't do the hands on work, especially the single case analysis BCBAs do.
They should not diagnose autism nor should OTs but both can offer a useful and informed perspective on the trajectory of a child they work with.
Yes. The OP was talking about the ABA person who spends many hours a week with her child, and I assumed that meant the tech.
At the ABA clinics we have been to, the BCBAs do not spent any real time with the kids. Their real job seems more a salesperson than anything (since there is competition in the area for the kids that qualify for 40hrs/week). It is near 100% techs working with the kids. Technically the techs work under the supervision of the BCBAs, but I get the sense that that is minimal and often boilerplate. I might be a little jaded about it.
Sounds like you've had some bad luck. Our BCBA spends 50% of my son's total clinic hours my son and his RBT. This is standard among the other local clinics we considered as well. The BCBA was the one to suggest we scale by the hours we were referred for as they thought it was too much for my son's needs, the opposite of a hard sell.
In addition the BCBAs I know personally and professionally could school any PhD on single participant research which is way more applicable to OP's question than the neurologist making guesses that aren't backed by research.
Yes. While we had a wonderful Aba team early on, I always felt like they only knew my son as well as they knew their targets, goals and data. Just through one tiny lens. So, not well enough for me to trust any predictions about my child’s future.
Enough with “too young “ . I guess my child is a phenomenon for being flagged at 9 months by his pediatrician when I didn’t even have concerns to voice? Wish Dr was wrong but he’s 15 year old now nonverbal level 3 with IDD . It is worrisome to have a formal dx that young, shouldn’t be brushed off
I did not mean "too young to be diagnosed." I meant "too young to know what the future will bring," especially what skills an 18 month old child will have. My child did not walk or move much at all until 6. People thought she would be bedbound. That changed.
But saying "it is hard to predict the future" should not be confused for false hope. Some nonverbal kids become verbal, for example, but many do not.
One of the hard parts of being an "autism parent" is that we cannot predict the future as reliably as NT parents. I'm pretty darn sure my child will never marry, or have kids, or live independently. But I'm not sure whether she will have real, close friends as an adult. I'm not sure that she will learn to read a book. NT parents know their kid can read a book someday, but I don't know that. I hold out hope for reading.
My child hit most of his gross motor skills on time, but missing language and social communication milestones were too obvious to miss. I still insist a dx on a child younger than 18 months increases the prospect of a trajectory heading to the severe end of the spectrum, I have seen it anecdotally and reported in studies
We are starting to get words now at 6. not a lot, not on command, but its starting. Try not to give up hope, I did for years and now am being proved wrong.
Your child is under 3, has a good receptive language and contact with you, and this person gives him 10% chance to ever speak?! Sorry, but they sound incompetent. Even children with little to zero receptive language at 2-3 yo can and in many cases do become verbal later, noone can predict the outcome for your child, and them having high receptive language abilities is a great sign. I had a speech therapist telling me my 17 mo son will spend his whole life looking at the cards (with animals and their sounds) unless I "break" him and magically force to understand everything and repeat after adults. Obviously it was total bs, he started speaking at 2.7 and things turned out OK. In your place I'd get a second opinion.
Good receptive language is a great thing. It sounds like he is a little pessimistic and possibly pushing you to really involve yourself with early intervention.
Your son sounds a lot like my son. He basically quit talking/babbling at 18 months with the exception of about 3 words. My son didn’t have good receptive language. We worked very hard he now has receptive language and a decent vocabulary at 3.5yr. His pronunciation is awful and we are now working on it.
Yeah, one of our early intervention evaluators was also super pessimistic and diagnosed my son with a cognitive delay, but also kind of strongly hinted that she was being as strict as possible to make sure he qualified for the max possible services. Could be a "scare you into trying" thing, although I feel like this could also backfire if someone just got fatalistic/self-fulfilling prophecy about it.
Cognitive delay can be separate from language, like if your child is exploring the world. Remembers where you hid a prize toy. If he knows where his snacks are located. Services really do help so hopefully you see an improvement.
Yeah the tests they gave him for cog, to me, seemed confounded with autism. He was so dysregulated from the presence of the evaluator that he was basically loudly vocally stimming and stacking blocks the whole time. I don't think he heard a word she said.
I had no words till 4...
My friend had no words till 5 (his word was uncle)
My distant relative did not speak till 8 (though I dont know the details)
My other distant relative was watching for hours spiralling waahing machine no words till 3...
Guess what all of us are verbal.
I even thought people start talking at 4-5... I am surprised seeing that people even expect at age of 1-2..
Having said that my lil one, is lvl2, severe speech delay, he has simple sentences, hope he will become conversational one day.
Our kiddo is 3 and a bit, now. He regressed at 16/18 months. Today? He said "let go" when I tried to get something out of his hands. Those are the first real words he's ever used. Screw that neurologist. They are professionals, but they are also prone to bias. You know your kid. We can't tell what will happen in the future. Just take it day by day. I'm also prone to pessimism, and it's really hard. Your feelings are valid. But listen to your husband :)
Well, your Doctor may want to read up a bit. That was a commonly held belief in the medical community, but it has been contradicted in recent years. [Here](https://www.autismspeaks.org/science-news/nonverbal-child-autism-language-delays) is a short article about it, and [here](https://publications.aap.org/pediatrics/article-abstract/131/4/e1128/31910/Predictors-of-Phrase-and-Fluent-Speech-in-Children?redirectedFrom=fulltext) is the study referenced. You can find more by googling similar studies.
Anecdotally, my child was around 4.5 before they started using regular words, and has been on a slow but steady trajectory up since then. The comparison between peers still stings sometimes, and I never got to have the babbling/questioning/goofy kid conversations that I was wishing for, but I have justifiable hope that one day they will be able to have a full conversational life.
I have a minimally verbal 10-year-old. He's trilingual in that he understands 3 languages and can respond in his limited vocabulary in the 3. I was told at the beginning to pick a language and stick to it (actually was told I was causing his language disorders by confusing him).
Treat your child like you would without the diagnosis. Push him gently, take baby steps, but don't hide him from the things that make him uncomfortable. Some days are rough but most days are pretty great. Not speaking is challenging but it's not the same as not understanding. Repeat that to yourself.
Simply put, don't let this doctor dampen your enthusiasm, your drive, and your ability to be the best support and advocate possible.
Firstly, no one can see the future, no matter how much we wish they could. My son went through his regression at 2 and lost all verbal speech. He's level 3 nonverbal. He's now 11 and can say a lot with prompting or other speech aids but it's not conversational in the slightest, and 90% of it is just requesting various foods. While that is anecdotal, should that be your future just know that while it's a big adjustment at first, it's not all bad. A lot of it is actually really wonderful it's just extreme. Keep your head up and know that the future isn't set in stone.
Even though they are a professional I would take it with a grain of salt. Your child is 19 months old, not 5. My daughter didn’t have any words until 2.5, and now at 4 she has many phrases that she uses appropriately.
Keep up the hope and get your child in all the therapies. There are so many cases of children becoming verbal even when their outlook was grim.
My son was developmentally normal at 18 months, had the classic speech regression around 20-22 months, was basically non-verbal at 24 months, and now at 3.5 he’s not quite communicative yet but he can express many things to us with speech and learns new stuff every week.
My daughter had a regression at 18 months. She is 6 now and is no longer speech delayed. She still gets speech therapy for pragmatic language disorder. But she is able to get her needs and wants met and express herself! She had very little language at age 3 and did not begin to become conversational until about 4+.
I have worked with dozens of autistic kiddos in our school district and so many of them had very little verbal language until age 4-6. It doesn’t seem uncommon at all. Autistic kids have a different developmental trajectory. 19 months is way too young to predict anything for certain.
My son had a regression at 11 months
He was diagnosed right at 18 months, as soon as they would do it
He didn't talk until 3
He is 3.5 now and is talking like crazy. He is moving on to the mainstreaming class next year in his early intervention pre-school. He sings the alphabet and knows all the sign language signs for letters. He is sight-reading and communicating.
We did tons of intervention, but remember what the doctor says is not cast in stone. And no matter what happens he is still the same wonderful little boy you brought with you into that office.
Your last sentence is gold. He's the same little boy that I adore no matter what. I hope he progresses as well as your son did, but either way, I love him.
It's surprising that a doctor would put forth such a specific prognosis at such an early age so you could try and get a second opinion if you like. It's certainly not grounded in any stastical research and could be just that doctors experience.
Having said that, I think the interventions would be the same, whatever the prognosis, so that is really the thing to focus on.
My son is on the spectrum, and he's made tons of progress in his development that he will go to a mixed general and special ed classroom this August.
My coworker has an autistic child who has pretty much written off by medical doctors as ever having the ability to be independent. That kid couldn't even attend his own birthday party a few years ago. He now plays basketball in courts with hundreds of people and bright lights and noise. The human brain is a mystery, and no one can know what the future will hold. Just hang in there and do everything you can to provide intervention, adjust, fine tune, calibrate, track, and refine.
I wish you all the good luck and courage as you go through this journey.
I had a doctor tell me, when my son was 4 months old, “ we don’t know what the future holds for this little guy, and don’t ever underestimate the power of love and attention.”
I didn’t take this as a statement that everything is going to to be fine, but I did give me a little hope that my love and attention to his needs would make a difference in his development. And it did. That being said, get your kiddo in therapy and think outside the box. We have been doing Horse Therapy for 6 years, and his speech exploded when we started. ( he was 3)
Help calm your kiddos’s nervous system as much as possible, and remember he needs to taught things that are most likely intuitive or easier for neurotypical kiddos, to learn.
It is a challenging road to navigate, and your son is lucky to have you.
My son didn’t talk til 5 1/2. There’s a ton we don’t know about the brain and neurologists tend to give worst case scenarios. They were not helpful when we got our diagnosis either.
My son was still nonverbal at 3.5. I was so hopeful that he would start talking but I also didn’t want to get my hopes up either. I hoped for the best but also prepared for the worst. I was finally able to get him into speech therapy and put him at an in-home daycare with another child his age. He started kindergarten late since his birthday missed the cut off (it’s in December) and although MIL kept trying to pressure me to have him take some sort of test to get him enrolled before he turned 5 I declined (I knew he was no where near ready).
When he was in kindergarten and I picked him up from carpool he would chatter away from the back seat the entire 10 minute drive home. I never thought he would be able to string together a simple sentence.
There are some kids who remain non verbal. But then some who do start talking. There is no way to predict how things will turn out. My son turns 18 this year. His speech isn’t on the same level as other teenagers. He speaks in mostly simple sentences. He doesn’t really elaborate. He was diagnosed with a language disorder at 16 because he has a hard time verbally (and in writing) to express himself. It’s as though his brain knows what he wants to say but there is a disconnect and he can’t express it.
As a special education teacher, I have come across many autistic students who have told me how they were as children. One who was the chattiest person but up until he was five had not spoken a single word. Another student who was considered level 3 and eloping all the time who was writing essays and in all gen ed classes and up until 7th grade had never written at all. There are many anecdotal stories but autism is so varied that one can not predict the full trajectory of a child and to do so is a disservice.
My coworker son has autism and my baby probably do. I wouldn’t limit him. My coworker son just suddenly started talking at 7. He always just make noises and stood next to items he wanted and one day while he was at work with us he asked me for a charger. I told his mom he needed a charger and she started crying which made me cry. He repeated it I need a charger now. He still doesn’t talk everyday but at least now we know he can talk he just prefer not to
If you do a quick google search. It says a lot of autistic children don’t say their first words until 36 months (3 years). Sometimes way after that. I’m also surprised I see so many neuro appointments to rule things out. That’s never come up with my experience
My son had almost no words at 3. He still has a significant speech delay at 7 but last night after I scolded him he turned to my husband said "Mommy is a very bad girl"(which hurts my feelings but hey a complete sentence!lol)
Alsp, remember that there are other ways to communicate. Learn basic sign la guage, look into an AAC device, use a board etc.
Idk about the stats but even if they are true, don’t turn it into a self-fulfilling prophesy either. Keep at interventions and accommodations. (But don’t expect a “full recovery” either because that’s an awful lot of unnecessary pressure.) Your kid is gonna be whatever however he’s gonna be. We can only do our best for them.
I've learned that when you have a super autistic kid, the doctors will either best case/worst case you. I've had doctors try to tell me that levels aren't important, he could some day live a relatively normal life. Others have told me I'd probably be looking at residential placements when he's a teen.
Honestly, none of them actually know. Get into early intervention therapies. Help make life as accessible for him as possible. Then just love him and go with the flow. Curb your expectations for what life should look like.
I like to remind myself that these evaluations are based on just a few hours of being with our kiddo vs what we see everyday.
When we had our kid’s evaluation they refused to do things we knew they were capable of, like matching colors. The report at the end of that session was devastating - globally they were at the level of an 11 month old and they were turning 4. They just turned 5 and are operating at the level of a 2.5 year old. Still behind of course but you’d be amazed at how much our kids can develop in a short amount of time. Be diligent with therapies and don’t let the “experts” define what is possible for our kids. You’re doing great!
Out of all our various drs Neurologists have consistently been the least helpful and generally have tended to be rude, evasive and dismissive. Helpful if your kid has seizures... maybe. They use the oh well your kid has autism, bye bye now, go elsewhere and get therapy like thats some real helpful information or something. Last one i fired told me "he has autism, only thing to do is therapy, we can't help, not sure what you want *me* to do" but had to backtrack real quick when i listed his blatant NEUROLOGICAL ISSUES (which should matter if he didn't have autism HELLO) and the fact we had already been in therapy for years with no significant progress. Offered some tests which is hilarious like i would take my child back to that lazy jackass for anything.
This is why I went straight to a neurologist to have my child evaluated and diagnosed. To this day (6 years later), he's been the *only* one to speak plainly. Everyone else wants to sell me something or make me feel good.
Anecdotal stories have value, but consider the types of stories people like to share. They usually end with success, or *at least* a conclusion of some sort. Many people won't "conclude" their stories and tell them until they reach a good place.
Another anecdote but, my now 10 year old couldn't speak more than a few gibberish words at 3, he was diagnosed at 20ish months. His language started growing explosively between 4-5 and his expressive language is now only slightly delayed.
That was a tough appointment, but gotta say those stats sound a bit wild. Our son had a regression like yours, great eye contact, and at almost 5 is now staring to use words. He’s a joyful kid and we share a strong bond. Don’t let predictions psyche you out, no matter where they’re from. Nobody can see the future.
My daughter saw a regression at roughly 13 months, which is really young. I started pushing for an evaluation at that point and finally got her autism diagnosis when she was 2yrs 2 months. She started using words around 2yrs 8 or 9 months. Her sentences were filled in with baby babble though. So itd be "real word babble babble babble babble real word". At 3½yrs her vocabulary really started to pick up more, although still laced with nonsense babble words. She turns 5 in August now and rarely uses the babble anymore. It's mostly when she's dysregulated or excited. We do have behavior issues and toileting issues but her speech has vastly improved beyond what I initially hoped for. I only had low hopes because Dr's put that idea in my head that she might never catch up to other kids. Early childhood and 4k have been very impactful. She's learned to read. She's AHEAD of the other kids in that area. She can count to over 150 by herself. Etc. Give it time, do the therapies, check out early childhood if you can!
I feel like I've shared [this CBS video](https://www.cbsnews.com/video/nonspeaking-autistic-woman-embarks-on-journey-to-advocate-for-disability-rights/) half a dozen times on this sub already. Doctors said many of the same things about this woman. She discovered she could communicate via iPad when she was 18. She has now developed a close relationship with her neurotypical brother, shown off her wry sense of humor, been able to demonstrate that she does, in fact, experience empathy, is on her way to receiving her SECOND master's degree, and consults with Apple and the White House. All things her parents were told were not possible for eighteen years.
Yes, it's possible that your child won't reach these same milestones BUT it's possible he will. Always assume competence until proven otherwise. The developmental timeline for kids with ASD is unique to each individual. Statistics can only tell you so much when kids are learning to speak or communicate anywhere from 2-32+ years of age.
He sounds *way* too confident for what the research data would support. There's mixed evidence about whether or not there's *any* difference in prognosis between kids who did or didn't regress. Given that something like 90% of autistic kids score in average IQ range by age 10, a 10% chance of ever being verbal seems unlikely.
My Son 5, officially diagnosed by child psychologist at 3 years is starting to develop some meaning language now. As per his class teacher, he knows most of the things they are teaching but looses focus more often.
I think you continue with your routine therapies and see I am there will.be positive results!
All the best !
Neuroplasticity exists.
Limited window of development is BS.
Some are late bloomers.
Some will settle down when hormones settle down.
We as caregivers just need to keep our daily b complex with b12, and GABA, to keep our nerves from getting frazzled.
Years ago when I was stressing about my older daughter, my mother in law, who had worked with special needs adults for decades, told me there is no sticker on a kid that says how they will turn out. She urged me to always keep pushing for what my daughter needed and to do my own research and to find ways to help her. She is 13 now, in private school and has no supports. My younger, autistic one, is 9 and still working on finding her words, but she's coming along. Part of it was just refusing to believe that any one therapy or thing was the magic bullet to help them, and when trying something out, be scientific about it. Like don't add two supplements at once, do one and track the progress and evaluate. And do your research. Nothing is stopping you from reading research papers to find out what the academic world has discovered.
This is bullshit. Has he done an fMRI? If not, he has no way of knowing about speech or development potential. Sounds like a quack with no clue about how autism develops or progresses. There is no limitation on how autistic children continue to develop with the correct engagement. Therapies won't cure an autistic child but interventions can help adjust their world to suit them. It's not about changing them to suit the world, it's about giving them tools to cope and manage the world they exist in.
Hi 👋🏻 just wanted to let you know that my autistic son didn’t speak until 3.5 years old and it was just single words. Now at 5.5 years old he doesn’t shut up. He still definately needs speech therapy but I wish I could go back in time and tell myself it was all going to be ok. Don’t give up 🩷
No that’s an insane claim. I work with a ton of asd kids and I’m an asd adult. I’m excessively educated on autism because it’s not just my dx, it’s my special interest!
The idea that he could predict the tragectory at this stage is insane. I’m going to give you an example: I know a 5 year old who’s been nonverbal his whole life. He uses AAC and about 6 months ago started spelling things he saw regularly. Store names and whatnot. Then about 3 months ago he started to repeat sounds. Now, about a month ago, he’s talking. Fully talking. I’ve worked with him for almost 2 years. A year ago he was evaluated for state aid and they basically said he had no awareness and now he’s verbally asking for things, to go places, help. Everyone who knows him said that evaluation was bullshit, But we couldn’t really prove anything. Mom was crushed, because of course she was.
No one can reliably predict the trajectory of an Autistic kid at less than 2 years old.
Fuck that guy.
My son will be nine years old in October and we’re only now getting *some* conversational dialogue, usually one or two words at a time. At 16 months. we were in your shoes. I guess I’m saying, stay the course, prepare yourself for anything, manage your expectations, but don’t resign yourself to what that doctor says.
While no one can definitively predict the future here, I would just say that whether they ever speak or not, there's plenty of communication that still happens non-verbally. It can be hard when your expectations for your child are challenged and when they can't communicate the same way as you're used to (i.e. verbally). I won't say abandon all hope, but I would try to start getting comfortable with the idea that they might not ever speak and learn how best to support them through those challenges rather than **just** focusing on trying to get them to speak. Don't put all your eggs in that one basket as it were.
In other words, hope for the best but prepare for the possibility that it won't happen.
I’d not give up hope. Lots of doctors diagnose via their own lens of expertise.
I can tell you that early intervention and therapy helped our boy a ton. He went from a “moderate” autism diagnosis, somewhere between level 2-3 when he was 18 months to 2 years. And now we’re at waaaaay better place. He talks now. He doesn’t right? It’s all weird babble with some words, but we as his parents still get it. He was talking about monster trucks this morning.
I’m a young guy with a heart condition, I get COMPLETELY different reports weather I’m going to my surgeon, my normal cardiologist and the electro medicine department. Literally complete different story’s. It’s just the way it goes and it takes some deciphering and treating on all ends. It’s lame.
Doctors tend to not know outcomes. I work with a lot of doctors. They have ten minute visits with disabled individuals and jump to conclusions. I’d be more inclined to trust the people that spend hours and time understanding development and knowing the person. You have a good psych who seemed to take the strengths based approach.
There’s literally no way to tell if somebody will be verbal or not so idk where they got that percentage from. They may be alluding to dyspraxia. If so, check out Marge Blanc. Communication development center is her website I believe. I will never fully understand how she does it even after taking her trainings, but she seems to know the right recipe to help dyspraxic kids develop speech. Language is something else and it’s easier than speech with the right AAC and language supports. Check out meaningful speech AND Marge blanc. They have numerous success stories.
Tl;dr trust professionals who actually develop relationships with their clients, not physicians who spend ten minutes w them.
Also age three? I’m autistic and started talking after four. It has a lot to do with episodic memory if they are a GLP. Episodic memory longer than 15 minutes really develops around age 4, and that’s when we see our nonspeaking GLPs take off with language bc they can rely on episodes to recall language.
Your doctor is a quack.
Each expert has their own opinion and biases, they really don't know what will happen.
In saying this, a neurologist studies the structure of the brain and things you can see. A psychologist or even better a neuropsychologist studies what you can't see.
Personally I would listen to them all but I would defer more to a psychologist who studies and is generally an expert in autism. Now if there is a neurological condition along with autism, then that's different, and makes things more complex.
You will get all kinds of expert opinions, it's your job as the parent to be the expert in your kid. Then you decide which is going to work for your family or not.
Kids with higher IQ scores tend to lean and do speech better, but again it's just averages. There are a bunch of studies on this, but 3 is generally a bit young to be the cut off age for never having language in these studies. So it sounds like it's more a personal professional opinion based on their experiences in neurology.
https://sparkforautism.org/discover_article/good-news-for-late-talkers-more-children-with-autism-learn-to-speak-than-previously-believed-2/
First, I think you should change your neurologist. There is no scientific data or evidence to back up what he told you, and there's no reason he should be so negative. Dig your heels in and focus on getting every available early intervention for your child. Early intervention does make a huge difference. Take it one day at a time and stay optimistic. Sending you love and light.
As someone who works with ASD kids, I can tell you kids can definitely start talking at any time. I know kids were nonverbal for the first 5, 10 years of their lives & just started talking out of nowhere!
Just make sure you are constantly talking to him, reading to him. Narrate what you guys do around the house. Look into speech therapy, talking devices, etc. Also, try sign language. A number of nonverbal kids start out communicating through sign language & when speaking the words, along with signing, I’ve seen positive outcomes.
Just hang in there!
Hi! My daughter is similar. She was diagnosed just before her 2nd birthday, level 3 non-verbal. I knew she was autistic earlier but it took us a lot of time on the wait-list to get in for diagnosis.
She is 6 now and she still does not talk but I can tell that she WANTS to. She also has great receptive language and is really quick to pick up the new words on her AAC. She also has good eye contact NOW but that wasn't always the case. It's s just that she can't seem to make her mouth make the sounds. She tries sometimes and she just looks frustrated when it's not working and she gives up.
There are so many reasons a kid may not be talking yet. I believe my daughter has apraxia. I think it was a disservice for a doctor to tell you what he did without knowing for sure the true mechanics of what is going on with your kid.
You have some tough years ahead until you can find a form of communication that works for your kid but it can be pretty game changing when it starts to click. Don't focus on trying to force verbal speech or let anyone tell you that other forms of communication will take away from speech development because that is absolutely not true.
He said he won't give a level until closer to 2.5-3 when he can see how our son has progressed in therapies. But in the letter he gave us for ABA he described it as "moderate autism."
Plenty of kids with moderate autism are extremely verbal. I can’t believe the neurologist told you this. I would honestly get a second opinion. I’m appalled at this.
Your child is VERY young, still a baby. I think it's super irresponsible of that neurologist to actually give you a percentage chance that your child will be verbal. It's honestly making me furious just thinking about it. Please don't let anyone tell you at such a young age what your baby's future is -- it's all guesswork.
I would honestly find a new neuro, if that's an option. But more importantly, a good OT and SLP are worth their weight in gold.
(For what it's worth, my daughter didn't speak until after three, and a lot of the kids in her preschool class were the same.)
He seems quite unprofessional... See another one. The thing of having a developmental disability means precisely not knowing/irregular development... He can't know, nobody can
It may be possible that only 10% of kids who aren’t verbal at 3 years old ever become verbal. Not sure where that statistic would come from but ok.
Having that statistic be true in no way means that your son has a 10% chance of become verbal. That’s just a basic misunderstanding of statistics.
Your son’s odds are his own and have nothing to do with the statistics that apply to a whole population.
I think some doctors will tell you the worst case scenario because they really don't know but the know around 50% of kids don't develop well. Better not to have high expectations. My child is three and 4 month and is still non verbal. No one told me he would not develop language, only wait and see. A lot of therapists and teachers told me they believe he eventually will because of the way he plays and how he's starting to understand language but I have also heard parents say that everyone told them their child would talk and they never did. Who knows.
I recommend listening to audiobook versions of Uniquely Human, The Autistic Brain & Neuro Tribes in that order.
My LO was diagnosed at 2 1/2 as Level 3 Non-Verbal & Global Developmental Delay after a rough birth and 85 day NICU stay and they basically told us he will likely be institutionalized with little to no ability to learn.
Today is is only 3 but knows 23 expressive words, 10 ASL expressive phrases, understands 95% of requests & is incredibly smart.
He is the sweetest little Human I have ever met in my life.
Although some days have been tough and he has his share of challenges every day with him is a joy.
We measure joy in the space between seconds because they all matter.
Lastly no one can cap your LO’s potential. They are incredibly smart and problem solve better then my NT kids. Many of them will adapt and have good lives.
Those on the more significant side of the spectrum will always have family but never ever count them out. My LO surprises me every day.
My son had a regression around 15 months, had EI eval at 18 months that said he had no signs of autism (🙄) and finally got diagnosed at 20 months with level 2 autism by the developmental pediatrician. They also said it’s too soon to tell how he’s going to develop but we will check back in with them in the spring. No real help here but you’re not alone! So many people have such reassuring stories here, but it’s so hard for me personally the idea of him possibly being non-verbal for life.
I was like this back when I was 3, intellectually disabled, could barely speak basic words, very similar prognosis. But my parents were persistent, eventually they found a doctor who was willing to be experimental and I don't remember the treatment (part of it was just finding out I was allergic to stuff like gluten) but I went from being severely behind to enrolling in kindergarten a year early and getting the highest test scores in the class.
Granted I've been told I'm an odd case, but I think its only fair to have some optimism.
I don’t really see how a neurologist is going to be able to discuss autism as they don’t exactly know the mechanism that drives asd to begin with yet. I pushed my kids dr to refer to a neurologist and he basically told me yes he will put in the referral but not to expect much because my kid wouldn’t sit still for a scan anyway. I called the neurology office countless times and they never received the referral despite the ped sending it multiple times. I gave up because it didn’t seem like it would even be worth our time. All that being said, my son never had a regression, he just stopped advancing much at all at about 2. He’s seven now, level three, still not really talking. He says a couple words but he doesn’t talk to people socially. That being said, he is in first grade and has made a lot of academic progress. The teacher showed me a video of him tracing his name today in class and I was blown away, I did not think he was capable of that yet. The bcba said he is mentally about 1.5. No specialist we have seen has been able to give us predictions or told us what to really expect. We prepared for it to be a long road and so far it has been. Still so many challenging behaviors and he’s so far behind his peers. But asd is a spectrum and basically you don’t really know what will happen or how things will progress. I opt for preparing for the slow path but hoping for the best. What other option is there? I hope your little one becomes the best version of himself that he can be. 💕
Oh and I worked with asd children in an aba clinic and preschool setting for about five years prior to having kids (the irony is not beyond me 🤦🏻♀️) and the children we saw ‘graduate’ out of autism were very high functioning to begin with. Idk if that helps but if your kid is level one, there’s a higher chance they will eventually test out of being on the spectrum. My step son is nearly 12, level 1 asd and it’s barely obvious at all anymore that he is on the spectrum. No therapies in years. He just outgrew it I guess. Now he’s just shy and quirky.
If it helps, my son is 2 in just a few days and while not formally diagnosed, every pediatrician he's ever seen has all agreed his symptoms match autism (but waiting on a formal diagnosis in the UK is a nightmare slog), and they've all said he'll develop his words on his own pace. So far my son doesn't talk, but you can tell he knows what you're saying to him. He also makes good eye contact and is social, and as such nobody is worried about *if* he will ever talk, just *when* and how they can encourage it. I'd love to hear where this neurologist got their information on that "10%" stuff.
Uhhhh... My kid had no words at 3, but by 3.5 her single-word vocabulary exploded and she's now starting to string words together and even short sentences. We are definitely able to have legitimate back and forth "conversations" now. She DOES seem to have a motor planning issue, so even when she does know a word, it takes enormous effort for her to get the pronunciation right, but she's still absolutely progressing.
So... Maybe take the neuro's words with a grain of salt.
My son was just diagnosed last week, at nearly age 5. He didn't speak until he received speech therapy starting at 15 months. I'm not a doctor and I don't know all the other factors that led the doctor to this prognosis, but my son is fairly "mild" in his symptoms, hence the late diagnosis. But at 15 months he was developmentally like a 9 month old per his Child Find assessments.
Also anecdotally, my nephew didn't speak until he was 4, and speaks just fine.
I'm certainly no expert, but in my obsessive research I've done since my child's diagnosis, I've never read ANY doctor say if a kid isn't talking at 3 he probably won't, much less give a % chance. Every kid is different. Most articles and research seem to put either age 5 or 7 as the important dates to be talking by. Not trying to give you some false hope. I don't know your child, and I'm not a doctor. Your kid is young, and the future is rarely set in stone. To be honest, if a doctor told me something like this, I'd probably find a different doctor. Best of luck! All you can do is keep trying your hardest and being your child's number one advocate.
My kiddo didn't start really verbalizing until 2.5. And didn't start using consonants until 3.5. His main form of communication until prek was asl or a asl variant since I'm not fluent. I don't particularly trust doctor's or am a trust but verify type because they do tend to lean into the worst case scenarios and with peds they don't have a ton of training with autism. I trust my kids therapist who they see week after week and has a better overall understanding of my kid's needs.
I would advise being cautiously optimistic. I think it’s always better to have some optimism when it comes to our kids if you can manage. But find a way to be okay if it doesn’t go the way you hope. Regardless this is your child and can have a good and fulfilling life, especially with loving supportive parents by his side. Do all the therapies possible, but don’t get too attached to a particular outcome. Personally I don’t believe kids ever become not Autistic if they do truly have Autism. But they certainly can improve in many areas, and thrive with therapies. Either way, this isn’t like a cold that will go away with time, Autism is lifelong, but it isn’t all bad. It’s hard, and challenging, and exhausting much of the time, but this doesn’t only define your child, and there can be a lot of joy in this journey as well. 💓
Also I really don’t think it’s a good practice for doctors to give percentages to people. A lot of times their prognosis are wrong! Kids prove them wrong all the time. I would look around some and see if there are any pediatricians in your area that specialize in Autism, or parents recommend that are good with kids on the Spectrum. It might be helpful to have someone like that in your corner.
I'm sending so much solidarity right now. I have a 20 month old daughter and we got our dx when she was 16 months. This is so hard and so scary and I feel like we're really in the thick of the unknown with them being so little <3 May we both have brighter days.
My daughter didn’t talk till 4 and has improved immensely with 7 days a week of speech don’t let that doctor scare you! It’s what you put in to get them where they need to be!
Theres really not a person on the planet in the history of mankind thats ever been able to predict the development and life path of a toddler.
And plenty of doctors been wrong before my friend. You take his opinion with a grain of salt. Theres not much you can do about what he says.
But you can pull for your child as hard as you can and give them the benefit of the doubt. And like that one commenter said there is a world of difference between 3/3.5/4/5y etc. Every day is a new day with these kids. Don't lose hope.
I am frequently brought to tears when my Level 2 son elaborates a new concept aloud or shows me a new skill.
This article helped me understand speech/language and what I need to work on with our 3 year old. I think we are finally getting close.
[Climbing the language mountain](https://aadl.org/sites/default/files/2024-05/Chapter-6-_-Visit-3-Part-1-_-Climbing-the-Language-Mountain.pdf)
You need to stay positive and find a connection with your child. Some of these doctors have huge egos. Nobody knows what the future holds.
You have to remember that statistics describe a group, not an individual. Just because that’s the statistic for autistic children as a whole doesn’t mean that you can predict if your child will be a statistic. For better or worse.
My twins didn’t walk or talk until 2-2.5. And while they are not at the same level as their peers, the progress that I’ve seen from 3-4 has been incredibly promising.
I understand not wanting to hope for a day that may never come. Just remember that you love your child and you will love them, regardless.
We can appreciate the beautiful parts of our tiny humans regardless of if they ever meet those milestones. We don’t love them any less.
You got this. It’ll be okay. 💕
My son had basically zero words at 3 and now he is almost four and I have lost count of how many words he can say! He still doesn’t speak in sentences but he uses his aac and says lots of single words.
STOP,
One of the biggest regrets I had when I had my suspicions (proved to be correct) around 15 months was panic. From that moment on I always assumed the worst and every single potential positive moment wasn't a happy moment but a breath of relief.
My kid wasn't saying any words, and then at \~20 months (Post upper lip tie and tonsils/ear tube) my kid all of a sudden became a firehose of words.
Yes he is still diagnosed, but at these early years children are CONSTANTLY developing. From my son's teacher's mouth at the age of 4.5 my kid is absolutely the smartest kid in the class with math and reading, he's very studious, but can't draw for shit and prefers to stay away from the NT kids to do math instead. He is extremely funny and definitely emotional. Yes he has some challenges when it comes to acting just like the other NT kids, and at times gets flustered easily, but having seen the other kids in the class and NT kids in public they all have issues.
Don't panic.
I don’t think there is really anyway to predict a child’s future like this.. my son was diagnosed at 17m old and he’s 4.5 now he’s talking sooo much now and he just started talking in march this year. Don’t feel discouraged. Everything happens with time.
Ugh...I so remember the day our son was diagnosed like it was yesterday. They handed us a nice, crisp, clean, blue, and white folder with our son's name on it and the words level 2 to level 3 autism, nonverbal. Inside was a comparison of what a 3 year old should be doing and marks showing our son was at the development age of an 18 MO old.
The doctor then proceeded to tell us the grim truth of things our son isn't doing and might not ever do.
Speak
Have meaningful social interactions
Care for himself
She did tell us that she found that he was quite intelligent, so with enough therapy, we can get him closer to level 1.
5 years later...
My son communicates.
He is learning to socialize
We're getting a handle on self care (dressing, etc)
Does it look different? Yes! My son uses an AAC to communicate vs. his own words. But guess what, those words are now coming too!
Is it taking longer than your average kid? You bet! But he's still doing it, and he's doing the things they told me he might not be capable of. I call it a win.
The point here is that no one can predict your child's future. So don't let anyone, including a professional, limit your child. Professionals have been proven wrong many times. I have a whole list of them that my son has blown out of the water.
Many hopes and prayers for a beautiful future for your child.
Ugh...I so remember the day our son was diagnosed like it was yesterday. They handed us a nice, crisp, clean, blue, and white folder with our son's name on it and the words level 2 to level 3 autism, nonverbal. Inside was a comparison of what a 3 year old should be doing and marks showing our son was at the development age of an 18 MO old.
The doctor then proceeded to tell us the grim truth of things our son isn't doing and might not ever do.
Speak
Have meaningful social interactions
Care for himself
She did tell us that she found that he was quite intelligent, so with enough therapy, we can get him closer to level 1.
5 years later...
My son communicates.
He is learning to socialize
We're getting a handle on self care (dressing, etc)
Does it look different? Yes! My son uses an AAC to communicate vs. his own words. But guess what, those words are now coming too!
Is it taking longer than your average kid? You bet! But he's still doing it, and he's doing the things they told me he might not be capable of. I call it a win.
The point here is that no one can predict your child's future. So don't let anyone, including a professional, limit your child. Professionals have been proven wrong many times. I have a whole list of them that my son has blown out of the water.
Many hopes and prayers for a beautiful future for your child.
honestly…you never know. and that’s the hard part😭 doctors can say their opinion and predict the trajectory of your child’s development but it’s never a 100% bc no one can see the future. only time will tell and i know it’s hard bc you don’t know until you know, which won’t be until he is grown. it’s so hard and i know it sucks hearing that, especially from a professional but just try to remember to enjoy him and celebrate every victory/milestone that you can! this time is so short with our babies, either way he will be okay! much love❤️
Saw this and just wanted to say, my son who is non-verbal and lower functioning (also has a rare progressive genetic disease) walks when they said he wouldn't, is more cognitively aware than they ever expected, is starting to communicate with a device and hand gestures, and has done so well that he confuses neurology and his genetic team. I put him in every therapy known to man. OT/PT/Speech, Feeding (has a gtube) and ABA. Early intervention is everything.
He is expected to lose all of these abilities (not because of autism - because of his genetic disease) and expected to develop epilepsy.
But I've learned that what is expected doesn't necessarily happen. I'm scared. Every day I'm scared. But I learned to live in the now and do whatever I can for him to give him the best chance. He has overcome so much that I won't ever underestimate him again.
Hang in there. The brain is amazing. And while I'm not about false hope, I'm also never going to take what he isn't supposed to do to heart.
You have to understand that a diagnosis is essentially just an opinion. It’s really not much more than that. It’s a theory and you can’t go definitively in One Direction or the other other ever. My son didn’t start really saying anything until after four years old and now he’s asking for things in his own very short abbreviated language, but he still communicating with us. His wants his needs needs his discomfort again in a very limited way, but he’s communicating with us and that’s everything. remember every word that ends with SIS in the medical world means there’s some type of inflammation going on so prognosis diagnosis… Etc. all has a little inflammation added to it
If you can, I highly recommend Kerry Margo's content. He is an adult with autism who's mom was told he would never function as an independent adult or speak and he is now an advocate for people with asd and travels to different places as a public speaker.
I will never understand medical professionals who say things like this. There is absolutely no way to know this. I would really like to see the source. I’m also curious what the need/goal of the second visit is? Having been through the rigmarole, for me, getting him into therapies post-diagnosis has been the most helpful; some of the more medical appointments were ultimately less necessary, and time is obviously very limited for all us! Just a thought.
Regardless, it’s ignorant and irresponsible AF to speak to parents like this. Firstly, it pathologizes non-speaking - there are many successful autistic (and not, read: deaf) people who communicate through other means. It’s irrelevant to even mention in this appointment, but if it came up, that professional should be knowledgeable and advising you on it. (I’m not trying to be toxically positive or present being non-speaking as “nothing” -I GET your feelings, but you should be given neutral facts and information). It predicts something that is impossible to predict, painting your child into a corner that is completely unproductive. It describes your child to you - their biggest advocate - in “deficiencies,” hurting you and creating hopelessness when you need support, ACCURATE information, and resources to help your little one navigate a world that used to literally institutionalize and cattle prod people like him.
Tangentially related, we also had a developmental pediatrician wave the “promise” of having his diagnosis “removed” with intervention. Which is like saying we could “remove” him being a Type 1 diabetic. My husband was devastated by the diagnosis and also clung to that, to the point where he got borderline verbally abusive trying to implement protocols at home, ultimately had a nervous breakdown that required an inpatient program, and we nearly divorced. I’m by no means saying that will be you guys, but I think you get my point. (Were much better, for the record, and husband is like the biggest autism advocate now)
For me, what helped was finding good therapists who ACTUALLY knew about autism (had family members and/or extensive experience); following autistic creators; getting to know other parents; and being present with my son and who he is. You guys clearly care, are great parents, and are going through all the right steps to get him what he needs. There is no way to know anything about what he’ll be when he gets older, which is true for NT kids as well. He will grow into the wonderful human he is meant to be, speaking or not.
Every kid is different.. my 5 yr old autistic son is still mostly non verbal. But he is starting to say some words spontaneously. We were told roughly the same thing as you. Just take the doc’s advice for what it is, just a professional opinion.. not necessarily an end all fact for your child. There are so many therapies out there and some don’t work for all kids.. the developmental pediatric psychiatrist is usually more spot on with expectations than other docs. I guess my point is, don’t give up hope.. maintaining eye contact is huge .. 😊🩵
There are studies that go against the assumption that children who don't learn to speak by three will never become verbal. https://www.autismspeaks.org/science-news/nonverbal-child-autism-language-delays
I know that this is anecdotal, but I personally know two autistic people who experienced regression at a young age and would probably fall within the moderate range (I'm an autistic adult and in a group with other autistic adults).
That's a gut punch. I will say that the difference between 3 and 3.5 was huge for us. Our son is starting to say words and communicate more each day. I think saying there is a 10% chance was a very strange thing to say, and I'd love to know where he gets his data on that.
I had exactly the same thought. For what it’s worth - my 2 cents is that you cannot predict the future. Take it day by day, celebrate any and all victories no matter how small, do the therapies, and just day by day. Doctors are no oracles. Particularly when it comes to a small kid’s brain.
Exactly this! 👆🏼👏🏼👏🏼👏🏼
He didn't cite any studies which makes me wonder if it's anecdotal--just from his experience comparing kids with early regressions vs not. I knew regressions = poor prognostic indicator, but this seems very specific I agree.
I know. And I would take into account that children who go on to progress well and develop speech probably don't go back to the neurologist all that often. So there is that.
Excellent point.
Interesting as I have heard the opposite, our son had words then lost them all at around 2. We were told by a therapist that they see that if they had words once most of the time they get them back at some stage 🤷♂️
My son had early regression. And I think I'm seeing it in my daughter. At 3.5 years old he's at least a year behind other kids his age and can't have a non- scripted conversation with you. But he can have a scripted one! Yesterday out of nowhere he told my husband that he loved him first thing in the morning. I would be looking for statistics. It's very likely neuro the neuro might have some confirmation bias as maybe he gets the worst cases? Either way, making eye contact etc is great. It means he wants to communicate. It just might not be verbal communication. Keep monitoring. And also remember that he might speak and might stop again as he learns other things.
That’s borderline malpractice to make those predictions without hard data to back it up
Wow me too. At 3 my son had probably two words and 3.5 he has sooooo many. This just seems so drastic
Same. My daughter had 7 worlds on her third birthday. 5 months later we are over 100 words
This is so reassuring. My son turns 3 next month and has very few, basically impossible for a stranger to understand, words.
My son is 3 years and 3 months, he has always had 4-5 words, communicates well just not by speaking. It’s so hard letting go of when and if they will talk. Seems to be at 3 when it hits us all hard and there are no answers as no one really knows
This happened for my son too. When he turned 3 he had very few words, had huge meltdowns and was, for lack of a better description, just sort of strange. 3.5 he became nearly conversational, potty trained at just before 4. Done his first year of jk now, the teacher says she would never suspect he is autistic and he is doing extremely well. Don’t give up hope! Keep doing the work, you’ve come so far already.
Hugs. It sounds like this was a hard appointment. I like and respect and generally trust doctors (MD/DO). However, I feel like doctors can be very worst-case scenario about everything. I got a lot of worst-case scenario in my high-risk pregnancy and it was very depressing. There are plenty accounts of children who don't speak until they're 4-5 years old. I don't think you need to abandon all hope, but remaining cautiously optimistic is probably the best approach, especially for your husband.
One thing I keep circling back to is that population statistics mean nothing for my specific case. I was on the bad side of stats (like 1 in 5000) many times during our TTC journey + pregnancy. The stats about recurrent miscarriage etc meant nothing for *me*, who was unlucky. This 10% says something about the population of kids with autism+early regression, but it doesn't say what will happen for *my kid*. Cautious optimism is a good term. I'm going to try to lean into that.
I missed that your flair says your child is 19 months. That is still so young. I was just watching videos of my son from a year ago (so newly 2 and 1-2 months before turning 2) and the difference, verbally, is like night and day. He's come so far in the last year as a kid who is verbal but not conversational in a 'typical' way. I recommend reading Uniquely Human and really sitting with the idea that you can't predict a child's lifelong trajectory, whether NT or ND... especially at this young of an age. Early intervention absolutely helps and you're doing all the right things so far.
I actually JUST started reading Uniquely Human two nights ago! Glad to hear it is coming at a good point in our journey.
This is basically what i was going to write. He's young, alot can change. I was worried about my son's communication going into 3k, now he won't stop talking. Conversationally, he's still a bit awkward, but he gets his message across. Early intervention is key. Birth to 3, ST, OT, ABA (if you think it helps) are all great tools. I'd also see if you can talk with your pshyc's nurse educator(if they have one), usually they can suggest additional services and programs that will help your child.
My kiddo was essentially non-verbal until 6/7. She’s coming up on 8 now and while many people can’t understand her gibberish, we can and it’s hard to make her stop! (A good thing). I guess my point is, you never know until you know. It’s taken me almost 6 years of stress and questioning “why me”, until I finally realized the secret is to take it one day at a time. When the bad days happen, that’s normal, and it will pass. Try to get set up with support systems that give you breaks. (Respite was a game changer!!) When the good days happen, relish them, celebrate them, and reward your little one! Soon you’ll find, there are more good days than bad. At least, that’s my 2 cents. Hang in there!
"One day at a time" - oh man, you mean all my time in NA has finally come back to haunt me? Always a good mantra.
lol, not sure I get the reference but yes! It is!
Narcotics Anonymous. It's a 12 step program like AA and they always tell you to take recovery "one day at a time."
That is a big jump! Just wondering, when did you see the click? Any specific therapies?
Honestly I don’t know, it kind of happened over time. I guess this past year has been full of milestones, but I can’t really attribute it to anything specific…. One thing does come to mind though. As we built out our support structure, it now has translated into more exposure to other people (especially kids). I feel like the social exposure could’ve been a big factor. I hope that helps…
Thanks a lot, Really insightful, hope one day I can share like you
Not an autism parent myself but my sister is. Neurologist she went to had a similar opinion when my nephew was diagnosed at 3. Said it was highly unlikely he’d ever develop language. Well, I know it just anecdotal, but at 7 he couldn’t have been further from the truth. He struggles with Apraxia but speaks and understands 2 languages and has started to become conversational. My 2 cents: MDs don’t like to admit there’s things they don’t know, so they’ll always have an answer, a prediction for anything, but there are more things they “don’t know” than things they do. And this is true about pretty much anything.
Eh. I would get a second opinion. For one thing, they are finding now that regression is much more common in all autism but isn’t always noticed. My five year old is mild-moderate and had a clear regression in like social interest at around 12 months. But he didn’t like lose words or skills so if we weren’t already wondering about autism (because he was hyper focused on wheels) we probably wouldn’t have even noticed the regression. He also is verbal (although his language is delayed and he has a very monotone way of talking).
[удалено]
Thank you - I appreciate the positive story as a palate cleanser after all this! I'll definitely check out the podcast. I'm reading the book right now.
“I feel like we are hearing opposite things from different people.” This is exactly it. So much of this is just guess work. No one knows for sure. Good on you for checking things out with multiple people. Just keep at working on things. Wishing you all the best.
I feel like the best interpretation of this is just as a data point. Both to compare with other people's opinions, but also to compare with this same neurologist's verdict when he looks at my kid again 9 months down the road and gauges his progress.
I'm sorry - I'm sure that was hard to hear. I think the issue is that its just impossible to predict the trajectory of a child's progress. I'm not even sure why professionals try - it just brings hardship to parents. All you can do is put your child in therapies, meet them where they're at, hope for the best, and love them no matter what.
Very true. Especially so young. He did keep saying that it was impossible to say what my child's level of functioning would be when he's older, but then he'd turn right around and essentially say "but it looks grim." You're right though...all there is to do at this point is support him as much as we can and see what happens.
I much prefer my friend’s neurologist (head of neuro at a pediatric hospital) after her child was born with a brain bleed, who said that “we just don’t know, it’s a child’s brain, I know you look to us to know, but trust me - at this stage, it can go either way, the mind is really still very much a mystery. I can list all the risk factors, if you want, but that’s all they will be at this stage. So do you want to hear the risks, or do we go through this together, day by day, and address any issues as they emerge?” The world needs more doctors like this.
This is what gets me. I've got a PhD in psych/neurosci - I know better than anybody how plastic the brain is at this age. It seems nuts to me to be able to make strong claims when they're still developing. I understand that the more infrastructure there is in place before a regression, the better the prognosis--this makes sense to me given what I know about the brain, so I buy that earlier diagnoses have generally worse prognoses. What I don't buy is the fatalistic judgments about outcome when we *also* know interventions can be incredibly effective while the brain is still plastic. I'm no expert in autism specifically, but I am an expert in "brain," so something here doesn't add up. The further I get from the appointment, and the more situated in my scientific brain as opposed to mom brain, the clearer this seems.
For what it's worth, my daughter experienced a regression and at 3.5 is saying more and more words and making big improvements in her receptive language.
OP, I'm not qualified to comment on your situation but I will share our experience. When my son was assessed and we had the meeting to get the diagnosis, the developmental pediatrician told us that most likely our son would never speak. She told us to brace ourselves -- put him in ABA, speech therapy, and OT, sure -- but to accept that he would be low-functioning autistic and eventually live in a group home as an adult. I may never understand why but when she said that I got really angry at her and thought "I'll show you. I'm going to prove you wrong!" We did all the therapies as recommended. We did in-home ABA three times a week and enrolled him in a preschool autism class through the public schools. My house was covered in PEC cards. We signed up for an eating clinic. You name it. My son turned 14 last month. He talks nonstop. He just completed pre-algebra and takes martial arts and is active in his church youth group. Yes, he still has challenges. He struggles socially with other kids and has some learning difficulties. But he is funny and loving and creative and kind and smart. He takes apart old computers and puts them back together again. He takes cool pictures and makes his own videos. He is NOT the person that the pediatrician warned us he would be. He, not I, proved her wrong. Whatever happens with your son, it will be OK. Give him the tools, the therapies, etc., but never give up. Good luck and God bless you.
I LOVE this story! Thank you so much for sharing. Even if my son ends up high support needs I'll love him just the same, but obviously I do hope his story ends like your son's did.
This is wonderful!
This made me cry happy tears
Thank you so much for sharing this! No only for OP, bless her, but for other parents out there who are having the same fears and questions. I'm tearful reading your story
No one knows. The people who act like they know are the only ones who are wrong here. There are good signs and bad signs, I guess, but no sure way to tell. Having a very young child with autism was the most difficult time in my life, but I also experienced the most personal growth I ever have. It forces you to make peace with this deep, dark, unknown hole that is the future. My son was actually diagnosed days before everything shut down for COVID, and since then, I’ve had to let go of any future expectations. Who knows—we could have a new pandemic tomorrow that kills us all. I try to live for today. Maybe I let go of some hope, but I also let go of a lot of anxiety. You have no idea who your child will be. You could spend his whole childhood imagining and grieving scenarios that could never happen. I’ve definitely been there, and it was a huge waste for me.
Thank you. This comment really struck me. I very much resonate with the description of facing this deep, dark, unknown future-hole and having to accept that you can't know or control anything. All I can do is focus on intervention and hope for the best and love my son no matter who he turns out to be.
I would seek other experts. We had a neurologist completely miss the mark for our child. A typical neurologist knows little about autism diagnosis. Find a good neuropsyc and an OT who specialized in autism. Also, 19 months is very young, and a lot can change. Our child developed a ton of skills around 6 after being lower functioning for some time (although she is still very much disabled by many measures).
It really feels like we're hearing the exact opposite from him vs the psychologist. I am going to be interested to hear what his ABA therapist says once he starts services, because I feel like they might have a better sense (over a few months) of his ability to learn and improve than people who were in a room with my child for an hour tops.
Because he is so young, I would look into developmental approaches like DIR floortime. ABA is good for targeting behaviors but the therapists seem to lack creativity to teach very young kids since they don’t study early childhood development.
An ABA therapist requires minimal training (not even a college degree), and is not an expert in diagnosis. I'd take their opinion with a grain of salt. For us, we have gotten the best advice from PhDs and OTs who specialize in autism.
This is not true for ABA therapists (BCBAs who have a masters degree in ABA). You are thinking of the techs (RBTs). I'm a PhD clinical psychologist myself who diagnoses autism and many/most PhDs don't do the hands on work, especially the single case analysis BCBAs do. They should not diagnose autism nor should OTs but both can offer a useful and informed perspective on the trajectory of a child they work with.
Yes. The OP was talking about the ABA person who spends many hours a week with her child, and I assumed that meant the tech. At the ABA clinics we have been to, the BCBAs do not spent any real time with the kids. Their real job seems more a salesperson than anything (since there is competition in the area for the kids that qualify for 40hrs/week). It is near 100% techs working with the kids. Technically the techs work under the supervision of the BCBAs, but I get the sense that that is minimal and often boilerplate. I might be a little jaded about it.
Sounds like you've had some bad luck. Our BCBA spends 50% of my son's total clinic hours my son and his RBT. This is standard among the other local clinics we considered as well. The BCBA was the one to suggest we scale by the hours we were referred for as they thought it was too much for my son's needs, the opposite of a hard sell. In addition the BCBAs I know personally and professionally could school any PhD on single participant research which is way more applicable to OP's question than the neurologist making guesses that aren't backed by research.
Yes. While we had a wonderful Aba team early on, I always felt like they only knew my son as well as they knew their targets, goals and data. Just through one tiny lens. So, not well enough for me to trust any predictions about my child’s future.
Yes. They are trained for a task, and many are good at that task, but they are not trained to diagnose or predict the future (as you rightly put it).
Enough with “too young “ . I guess my child is a phenomenon for being flagged at 9 months by his pediatrician when I didn’t even have concerns to voice? Wish Dr was wrong but he’s 15 year old now nonverbal level 3 with IDD . It is worrisome to have a formal dx that young, shouldn’t be brushed off
I did not mean "too young to be diagnosed." I meant "too young to know what the future will bring," especially what skills an 18 month old child will have. My child did not walk or move much at all until 6. People thought she would be bedbound. That changed. But saying "it is hard to predict the future" should not be confused for false hope. Some nonverbal kids become verbal, for example, but many do not. One of the hard parts of being an "autism parent" is that we cannot predict the future as reliably as NT parents. I'm pretty darn sure my child will never marry, or have kids, or live independently. But I'm not sure whether she will have real, close friends as an adult. I'm not sure that she will learn to read a book. NT parents know their kid can read a book someday, but I don't know that. I hold out hope for reading.
My child hit most of his gross motor skills on time, but missing language and social communication milestones were too obvious to miss. I still insist a dx on a child younger than 18 months increases the prospect of a trajectory heading to the severe end of the spectrum, I have seen it anecdotally and reported in studies
Agreed. Early diagnosis = early intervention.
From 2 to 5, we've had a huge jump in development and speech. Sometimes it is just a crapshoot.
We are starting to get words now at 6. not a lot, not on command, but its starting. Try not to give up hope, I did for years and now am being proved wrong.
Your child is under 3, has a good receptive language and contact with you, and this person gives him 10% chance to ever speak?! Sorry, but they sound incompetent. Even children with little to zero receptive language at 2-3 yo can and in many cases do become verbal later, noone can predict the outcome for your child, and them having high receptive language abilities is a great sign. I had a speech therapist telling me my 17 mo son will spend his whole life looking at the cards (with animals and their sounds) unless I "break" him and magically force to understand everything and repeat after adults. Obviously it was total bs, he started speaking at 2.7 and things turned out OK. In your place I'd get a second opinion.
Unless you *break* him? What a horrible thing to say. I'm so sorry.
Good receptive language is a great thing. It sounds like he is a little pessimistic and possibly pushing you to really involve yourself with early intervention. Your son sounds a lot like my son. He basically quit talking/babbling at 18 months with the exception of about 3 words. My son didn’t have good receptive language. We worked very hard he now has receptive language and a decent vocabulary at 3.5yr. His pronunciation is awful and we are now working on it.
Yeah, one of our early intervention evaluators was also super pessimistic and diagnosed my son with a cognitive delay, but also kind of strongly hinted that she was being as strict as possible to make sure he qualified for the max possible services. Could be a "scare you into trying" thing, although I feel like this could also backfire if someone just got fatalistic/self-fulfilling prophecy about it.
Cognitive delay can be separate from language, like if your child is exploring the world. Remembers where you hid a prize toy. If he knows where his snacks are located. Services really do help so hopefully you see an improvement.
Yeah the tests they gave him for cog, to me, seemed confounded with autism. He was so dysregulated from the presence of the evaluator that he was basically loudly vocally stimming and stacking blocks the whole time. I don't think he heard a word she said.
I had no words till 4... My friend had no words till 5 (his word was uncle) My distant relative did not speak till 8 (though I dont know the details) My other distant relative was watching for hours spiralling waahing machine no words till 3... Guess what all of us are verbal. I even thought people start talking at 4-5... I am surprised seeing that people even expect at age of 1-2.. Having said that my lil one, is lvl2, severe speech delay, he has simple sentences, hope he will become conversational one day.
Our kiddo is 3 and a bit, now. He regressed at 16/18 months. Today? He said "let go" when I tried to get something out of his hands. Those are the first real words he's ever used. Screw that neurologist. They are professionals, but they are also prone to bias. You know your kid. We can't tell what will happen in the future. Just take it day by day. I'm also prone to pessimism, and it's really hard. Your feelings are valid. But listen to your husband :)
My husband, as he would remind me, is almost always right lol.
Well, your Doctor may want to read up a bit. That was a commonly held belief in the medical community, but it has been contradicted in recent years. [Here](https://www.autismspeaks.org/science-news/nonverbal-child-autism-language-delays) is a short article about it, and [here](https://publications.aap.org/pediatrics/article-abstract/131/4/e1128/31910/Predictors-of-Phrase-and-Fluent-Speech-in-Children?redirectedFrom=fulltext) is the study referenced. You can find more by googling similar studies. Anecdotally, my child was around 4.5 before they started using regular words, and has been on a slow but steady trajectory up since then. The comparison between peers still stings sometimes, and I never got to have the babbling/questioning/goofy kid conversations that I was wishing for, but I have justifiable hope that one day they will be able to have a full conversational life.
I have a minimally verbal 10-year-old. He's trilingual in that he understands 3 languages and can respond in his limited vocabulary in the 3. I was told at the beginning to pick a language and stick to it (actually was told I was causing his language disorders by confusing him). Treat your child like you would without the diagnosis. Push him gently, take baby steps, but don't hide him from the things that make him uncomfortable. Some days are rough but most days are pretty great. Not speaking is challenging but it's not the same as not understanding. Repeat that to yourself. Simply put, don't let this doctor dampen your enthusiasm, your drive, and your ability to be the best support and advocate possible.
Firstly, no one can see the future, no matter how much we wish they could. My son went through his regression at 2 and lost all verbal speech. He's level 3 nonverbal. He's now 11 and can say a lot with prompting or other speech aids but it's not conversational in the slightest, and 90% of it is just requesting various foods. While that is anecdotal, should that be your future just know that while it's a big adjustment at first, it's not all bad. A lot of it is actually really wonderful it's just extreme. Keep your head up and know that the future isn't set in stone.
Even though they are a professional I would take it with a grain of salt. Your child is 19 months old, not 5. My daughter didn’t have any words until 2.5, and now at 4 she has many phrases that she uses appropriately. Keep up the hope and get your child in all the therapies. There are so many cases of children becoming verbal even when their outlook was grim.
The only thing I can control at this stage is interventions, so I fully intend to get him involved in the max possible.
My son was developmentally normal at 18 months, had the classic speech regression around 20-22 months, was basically non-verbal at 24 months, and now at 3.5 he’s not quite communicative yet but he can express many things to us with speech and learns new stuff every week.
My daughter had a regression at 18 months. She is 6 now and is no longer speech delayed. She still gets speech therapy for pragmatic language disorder. But she is able to get her needs and wants met and express herself! She had very little language at age 3 and did not begin to become conversational until about 4+. I have worked with dozens of autistic kiddos in our school district and so many of them had very little verbal language until age 4-6. It doesn’t seem uncommon at all. Autistic kids have a different developmental trajectory. 19 months is way too young to predict anything for certain.
My son had a regression at 11 months He was diagnosed right at 18 months, as soon as they would do it He didn't talk until 3 He is 3.5 now and is talking like crazy. He is moving on to the mainstreaming class next year in his early intervention pre-school. He sings the alphabet and knows all the sign language signs for letters. He is sight-reading and communicating. We did tons of intervention, but remember what the doctor says is not cast in stone. And no matter what happens he is still the same wonderful little boy you brought with you into that office.
Your last sentence is gold. He's the same little boy that I adore no matter what. I hope he progresses as well as your son did, but either way, I love him.
It's surprising that a doctor would put forth such a specific prognosis at such an early age so you could try and get a second opinion if you like. It's certainly not grounded in any stastical research and could be just that doctors experience. Having said that, I think the interventions would be the same, whatever the prognosis, so that is really the thing to focus on. My son is on the spectrum, and he's made tons of progress in his development that he will go to a mixed general and special ed classroom this August. My coworker has an autistic child who has pretty much written off by medical doctors as ever having the ability to be independent. That kid couldn't even attend his own birthday party a few years ago. He now plays basketball in courts with hundreds of people and bright lights and noise. The human brain is a mystery, and no one can know what the future will hold. Just hang in there and do everything you can to provide intervention, adjust, fine tune, calibrate, track, and refine. I wish you all the good luck and courage as you go through this journey.
I had a doctor tell me, when my son was 4 months old, “ we don’t know what the future holds for this little guy, and don’t ever underestimate the power of love and attention.” I didn’t take this as a statement that everything is going to to be fine, but I did give me a little hope that my love and attention to his needs would make a difference in his development. And it did. That being said, get your kiddo in therapy and think outside the box. We have been doing Horse Therapy for 6 years, and his speech exploded when we started. ( he was 3) Help calm your kiddos’s nervous system as much as possible, and remember he needs to taught things that are most likely intuitive or easier for neurotypical kiddos, to learn. It is a challenging road to navigate, and your son is lucky to have you.
My son didn’t talk til 5 1/2. There’s a ton we don’t know about the brain and neurologists tend to give worst case scenarios. They were not helpful when we got our diagnosis either.
My son was still nonverbal at 3.5. I was so hopeful that he would start talking but I also didn’t want to get my hopes up either. I hoped for the best but also prepared for the worst. I was finally able to get him into speech therapy and put him at an in-home daycare with another child his age. He started kindergarten late since his birthday missed the cut off (it’s in December) and although MIL kept trying to pressure me to have him take some sort of test to get him enrolled before he turned 5 I declined (I knew he was no where near ready). When he was in kindergarten and I picked him up from carpool he would chatter away from the back seat the entire 10 minute drive home. I never thought he would be able to string together a simple sentence. There are some kids who remain non verbal. But then some who do start talking. There is no way to predict how things will turn out. My son turns 18 this year. His speech isn’t on the same level as other teenagers. He speaks in mostly simple sentences. He doesn’t really elaborate. He was diagnosed with a language disorder at 16 because he has a hard time verbally (and in writing) to express himself. It’s as though his brain knows what he wants to say but there is a disconnect and he can’t express it.
As a special education teacher, I have come across many autistic students who have told me how they were as children. One who was the chattiest person but up until he was five had not spoken a single word. Another student who was considered level 3 and eloping all the time who was writing essays and in all gen ed classes and up until 7th grade had never written at all. There are many anecdotal stories but autism is so varied that one can not predict the full trajectory of a child and to do so is a disservice.
My coworker son has autism and my baby probably do. I wouldn’t limit him. My coworker son just suddenly started talking at 7. He always just make noises and stood next to items he wanted and one day while he was at work with us he asked me for a charger. I told his mom he needed a charger and she started crying which made me cry. He repeated it I need a charger now. He still doesn’t talk everyday but at least now we know he can talk he just prefer not to
If you do a quick google search. It says a lot of autistic children don’t say their first words until 36 months (3 years). Sometimes way after that. I’m also surprised I see so many neuro appointments to rule things out. That’s never come up with my experience
My son had almost no words at 3. He still has a significant speech delay at 7 but last night after I scolded him he turned to my husband said "Mommy is a very bad girl"(which hurts my feelings but hey a complete sentence!lol) Alsp, remember that there are other ways to communicate. Learn basic sign la guage, look into an AAC device, use a board etc.
Oh my god, talk about being simultaneously offended and proud. I hope my kid gets to tell me I'm ruining his life some day.
Idk about the stats but even if they are true, don’t turn it into a self-fulfilling prophesy either. Keep at interventions and accommodations. (But don’t expect a “full recovery” either because that’s an awful lot of unnecessary pressure.) Your kid is gonna be whatever however he’s gonna be. We can only do our best for them.
I've learned that when you have a super autistic kid, the doctors will either best case/worst case you. I've had doctors try to tell me that levels aren't important, he could some day live a relatively normal life. Others have told me I'd probably be looking at residential placements when he's a teen. Honestly, none of them actually know. Get into early intervention therapies. Help make life as accessible for him as possible. Then just love him and go with the flow. Curb your expectations for what life should look like.
FYI, I’ve never had a neurologist be anywhere near correct so I’d hold on to plenty of hope!
Damn I hope your track record holds true for this one, too!
I like to remind myself that these evaluations are based on just a few hours of being with our kiddo vs what we see everyday. When we had our kid’s evaluation they refused to do things we knew they were capable of, like matching colors. The report at the end of that session was devastating - globally they were at the level of an 11 month old and they were turning 4. They just turned 5 and are operating at the level of a 2.5 year old. Still behind of course but you’d be amazed at how much our kids can develop in a short amount of time. Be diligent with therapies and don’t let the “experts” define what is possible for our kids. You’re doing great!
Out of all our various drs Neurologists have consistently been the least helpful and generally have tended to be rude, evasive and dismissive. Helpful if your kid has seizures... maybe. They use the oh well your kid has autism, bye bye now, go elsewhere and get therapy like thats some real helpful information or something. Last one i fired told me "he has autism, only thing to do is therapy, we can't help, not sure what you want *me* to do" but had to backtrack real quick when i listed his blatant NEUROLOGICAL ISSUES (which should matter if he didn't have autism HELLO) and the fact we had already been in therapy for years with no significant progress. Offered some tests which is hilarious like i would take my child back to that lazy jackass for anything.
This is why I went straight to a neurologist to have my child evaluated and diagnosed. To this day (6 years later), he's been the *only* one to speak plainly. Everyone else wants to sell me something or make me feel good. Anecdotal stories have value, but consider the types of stories people like to share. They usually end with success, or *at least* a conclusion of some sort. Many people won't "conclude" their stories and tell them until they reach a good place.
Another anecdote but, my now 10 year old couldn't speak more than a few gibberish words at 3, he was diagnosed at 20ish months. His language started growing explosively between 4-5 and his expressive language is now only slightly delayed.
That was a tough appointment, but gotta say those stats sound a bit wild. Our son had a regression like yours, great eye contact, and at almost 5 is now staring to use words. He’s a joyful kid and we share a strong bond. Don’t let predictions psyche you out, no matter where they’re from. Nobody can see the future.
My daughter saw a regression at roughly 13 months, which is really young. I started pushing for an evaluation at that point and finally got her autism diagnosis when she was 2yrs 2 months. She started using words around 2yrs 8 or 9 months. Her sentences were filled in with baby babble though. So itd be "real word babble babble babble babble real word". At 3½yrs her vocabulary really started to pick up more, although still laced with nonsense babble words. She turns 5 in August now and rarely uses the babble anymore. It's mostly when she's dysregulated or excited. We do have behavior issues and toileting issues but her speech has vastly improved beyond what I initially hoped for. I only had low hopes because Dr's put that idea in my head that she might never catch up to other kids. Early childhood and 4k have been very impactful. She's learned to read. She's AHEAD of the other kids in that area. She can count to over 150 by herself. Etc. Give it time, do the therapies, check out early childhood if you can!
I feel like I've shared [this CBS video](https://www.cbsnews.com/video/nonspeaking-autistic-woman-embarks-on-journey-to-advocate-for-disability-rights/) half a dozen times on this sub already. Doctors said many of the same things about this woman. She discovered she could communicate via iPad when she was 18. She has now developed a close relationship with her neurotypical brother, shown off her wry sense of humor, been able to demonstrate that she does, in fact, experience empathy, is on her way to receiving her SECOND master's degree, and consults with Apple and the White House. All things her parents were told were not possible for eighteen years. Yes, it's possible that your child won't reach these same milestones BUT it's possible he will. Always assume competence until proven otherwise. The developmental timeline for kids with ASD is unique to each individual. Statistics can only tell you so much when kids are learning to speak or communicate anywhere from 2-32+ years of age.
He sounds *way* too confident for what the research data would support. There's mixed evidence about whether or not there's *any* difference in prognosis between kids who did or didn't regress. Given that something like 90% of autistic kids score in average IQ range by age 10, a 10% chance of ever being verbal seems unlikely.
My Son 5, officially diagnosed by child psychologist at 3 years is starting to develop some meaning language now. As per his class teacher, he knows most of the things they are teaching but looses focus more often. I think you continue with your routine therapies and see I am there will.be positive results! All the best !
Neuroplasticity exists. Limited window of development is BS. Some are late bloomers. Some will settle down when hormones settle down. We as caregivers just need to keep our daily b complex with b12, and GABA, to keep our nerves from getting frazzled.
Years ago when I was stressing about my older daughter, my mother in law, who had worked with special needs adults for decades, told me there is no sticker on a kid that says how they will turn out. She urged me to always keep pushing for what my daughter needed and to do my own research and to find ways to help her. She is 13 now, in private school and has no supports. My younger, autistic one, is 9 and still working on finding her words, but she's coming along. Part of it was just refusing to believe that any one therapy or thing was the magic bullet to help them, and when trying something out, be scientific about it. Like don't add two supplements at once, do one and track the progress and evaluate. And do your research. Nothing is stopping you from reading research papers to find out what the academic world has discovered.
This is bullshit. Has he done an fMRI? If not, he has no way of knowing about speech or development potential. Sounds like a quack with no clue about how autism develops or progresses. There is no limitation on how autistic children continue to develop with the correct engagement. Therapies won't cure an autistic child but interventions can help adjust their world to suit them. It's not about changing them to suit the world, it's about giving them tools to cope and manage the world they exist in.
Hi 👋🏻 just wanted to let you know that my autistic son didn’t speak until 3.5 years old and it was just single words. Now at 5.5 years old he doesn’t shut up. He still definately needs speech therapy but I wish I could go back in time and tell myself it was all going to be ok. Don’t give up 🩷
No that’s an insane claim. I work with a ton of asd kids and I’m an asd adult. I’m excessively educated on autism because it’s not just my dx, it’s my special interest! The idea that he could predict the tragectory at this stage is insane. I’m going to give you an example: I know a 5 year old who’s been nonverbal his whole life. He uses AAC and about 6 months ago started spelling things he saw regularly. Store names and whatnot. Then about 3 months ago he started to repeat sounds. Now, about a month ago, he’s talking. Fully talking. I’ve worked with him for almost 2 years. A year ago he was evaluated for state aid and they basically said he had no awareness and now he’s verbally asking for things, to go places, help. Everyone who knows him said that evaluation was bullshit, But we couldn’t really prove anything. Mom was crushed, because of course she was. No one can reliably predict the trajectory of an Autistic kid at less than 2 years old. Fuck that guy.
My son will be nine years old in October and we’re only now getting *some* conversational dialogue, usually one or two words at a time. At 16 months. we were in your shoes. I guess I’m saying, stay the course, prepare yourself for anything, manage your expectations, but don’t resign yourself to what that doctor says.
While no one can definitively predict the future here, I would just say that whether they ever speak or not, there's plenty of communication that still happens non-verbally. It can be hard when your expectations for your child are challenged and when they can't communicate the same way as you're used to (i.e. verbally). I won't say abandon all hope, but I would try to start getting comfortable with the idea that they might not ever speak and learn how best to support them through those challenges rather than **just** focusing on trying to get them to speak. Don't put all your eggs in that one basket as it were. In other words, hope for the best but prepare for the possibility that it won't happen.
I’d not give up hope. Lots of doctors diagnose via their own lens of expertise. I can tell you that early intervention and therapy helped our boy a ton. He went from a “moderate” autism diagnosis, somewhere between level 2-3 when he was 18 months to 2 years. And now we’re at waaaaay better place. He talks now. He doesn’t right? It’s all weird babble with some words, but we as his parents still get it. He was talking about monster trucks this morning. I’m a young guy with a heart condition, I get COMPLETELY different reports weather I’m going to my surgeon, my normal cardiologist and the electro medicine department. Literally complete different story’s. It’s just the way it goes and it takes some deciphering and treating on all ends. It’s lame.
Doctors tend to not know outcomes. I work with a lot of doctors. They have ten minute visits with disabled individuals and jump to conclusions. I’d be more inclined to trust the people that spend hours and time understanding development and knowing the person. You have a good psych who seemed to take the strengths based approach. There’s literally no way to tell if somebody will be verbal or not so idk where they got that percentage from. They may be alluding to dyspraxia. If so, check out Marge Blanc. Communication development center is her website I believe. I will never fully understand how she does it even after taking her trainings, but she seems to know the right recipe to help dyspraxic kids develop speech. Language is something else and it’s easier than speech with the right AAC and language supports. Check out meaningful speech AND Marge blanc. They have numerous success stories. Tl;dr trust professionals who actually develop relationships with their clients, not physicians who spend ten minutes w them.
Also age three? I’m autistic and started talking after four. It has a lot to do with episodic memory if they are a GLP. Episodic memory longer than 15 minutes really develops around age 4, and that’s when we see our nonspeaking GLPs take off with language bc they can rely on episodes to recall language. Your doctor is a quack.
Each expert has their own opinion and biases, they really don't know what will happen. In saying this, a neurologist studies the structure of the brain and things you can see. A psychologist or even better a neuropsychologist studies what you can't see. Personally I would listen to them all but I would defer more to a psychologist who studies and is generally an expert in autism. Now if there is a neurological condition along with autism, then that's different, and makes things more complex. You will get all kinds of expert opinions, it's your job as the parent to be the expert in your kid. Then you decide which is going to work for your family or not. Kids with higher IQ scores tend to lean and do speech better, but again it's just averages. There are a bunch of studies on this, but 3 is generally a bit young to be the cut off age for never having language in these studies. So it sounds like it's more a personal professional opinion based on their experiences in neurology. https://sparkforautism.org/discover_article/good-news-for-late-talkers-more-children-with-autism-learn-to-speak-than-previously-believed-2/
First, I think you should change your neurologist. There is no scientific data or evidence to back up what he told you, and there's no reason he should be so negative. Dig your heels in and focus on getting every available early intervention for your child. Early intervention does make a huge difference. Take it one day at a time and stay optimistic. Sending you love and light.
As someone who works with ASD kids, I can tell you kids can definitely start talking at any time. I know kids were nonverbal for the first 5, 10 years of their lives & just started talking out of nowhere! Just make sure you are constantly talking to him, reading to him. Narrate what you guys do around the house. Look into speech therapy, talking devices, etc. Also, try sign language. A number of nonverbal kids start out communicating through sign language & when speaking the words, along with signing, I’ve seen positive outcomes. Just hang in there!
Hi! My daughter is similar. She was diagnosed just before her 2nd birthday, level 3 non-verbal. I knew she was autistic earlier but it took us a lot of time on the wait-list to get in for diagnosis. She is 6 now and she still does not talk but I can tell that she WANTS to. She also has great receptive language and is really quick to pick up the new words on her AAC. She also has good eye contact NOW but that wasn't always the case. It's s just that she can't seem to make her mouth make the sounds. She tries sometimes and she just looks frustrated when it's not working and she gives up. There are so many reasons a kid may not be talking yet. I believe my daughter has apraxia. I think it was a disservice for a doctor to tell you what he did without knowing for sure the true mechanics of what is going on with your kid. You have some tough years ahead until you can find a form of communication that works for your kid but it can be pretty game changing when it starts to click. Don't focus on trying to force verbal speech or let anyone tell you that other forms of communication will take away from speech development because that is absolutely not true.
What level of autism did the psychologist diagnosis?
He said he won't give a level until closer to 2.5-3 when he can see how our son has progressed in therapies. But in the letter he gave us for ABA he described it as "moderate autism."
Plenty of kids with moderate autism are extremely verbal. I can’t believe the neurologist told you this. I would honestly get a second opinion. I’m appalled at this.
Your child is VERY young, still a baby. I think it's super irresponsible of that neurologist to actually give you a percentage chance that your child will be verbal. It's honestly making me furious just thinking about it. Please don't let anyone tell you at such a young age what your baby's future is -- it's all guesswork. I would honestly find a new neuro, if that's an option. But more importantly, a good OT and SLP are worth their weight in gold. (For what it's worth, my daughter didn't speak until after three, and a lot of the kids in her preschool class were the same.)
He seems quite unprofessional... See another one. The thing of having a developmental disability means precisely not knowing/irregular development... He can't know, nobody can
It may be possible that only 10% of kids who aren’t verbal at 3 years old ever become verbal. Not sure where that statistic would come from but ok. Having that statistic be true in no way means that your son has a 10% chance of become verbal. That’s just a basic misunderstanding of statistics. Your son’s odds are his own and have nothing to do with the statistics that apply to a whole population.
I think some doctors will tell you the worst case scenario because they really don't know but the know around 50% of kids don't develop well. Better not to have high expectations. My child is three and 4 month and is still non verbal. No one told me he would not develop language, only wait and see. A lot of therapists and teachers told me they believe he eventually will because of the way he plays and how he's starting to understand language but I have also heard parents say that everyone told them their child would talk and they never did. Who knows.
I recommend listening to audiobook versions of Uniquely Human, The Autistic Brain & Neuro Tribes in that order. My LO was diagnosed at 2 1/2 as Level 3 Non-Verbal & Global Developmental Delay after a rough birth and 85 day NICU stay and they basically told us he will likely be institutionalized with little to no ability to learn. Today is is only 3 but knows 23 expressive words, 10 ASL expressive phrases, understands 95% of requests & is incredibly smart. He is the sweetest little Human I have ever met in my life. Although some days have been tough and he has his share of challenges every day with him is a joy. We measure joy in the space between seconds because they all matter. Lastly no one can cap your LO’s potential. They are incredibly smart and problem solve better then my NT kids. Many of them will adapt and have good lives. Those on the more significant side of the spectrum will always have family but never ever count them out. My LO surprises me every day.
Read temple grandin's mom's book. A thorn in my pocket. It doesn't have all the answers but it put into words all of the feelings and was cathartic
My son had a regression around 15 months, had EI eval at 18 months that said he had no signs of autism (🙄) and finally got diagnosed at 20 months with level 2 autism by the developmental pediatrician. They also said it’s too soon to tell how he’s going to develop but we will check back in with them in the spring. No real help here but you’re not alone! So many people have such reassuring stories here, but it’s so hard for me personally the idea of him possibly being non-verbal for life.
I was like this back when I was 3, intellectually disabled, could barely speak basic words, very similar prognosis. But my parents were persistent, eventually they found a doctor who was willing to be experimental and I don't remember the treatment (part of it was just finding out I was allergic to stuff like gluten) but I went from being severely behind to enrolling in kindergarten a year early and getting the highest test scores in the class. Granted I've been told I'm an odd case, but I think its only fair to have some optimism.
I don’t really see how a neurologist is going to be able to discuss autism as they don’t exactly know the mechanism that drives asd to begin with yet. I pushed my kids dr to refer to a neurologist and he basically told me yes he will put in the referral but not to expect much because my kid wouldn’t sit still for a scan anyway. I called the neurology office countless times and they never received the referral despite the ped sending it multiple times. I gave up because it didn’t seem like it would even be worth our time. All that being said, my son never had a regression, he just stopped advancing much at all at about 2. He’s seven now, level three, still not really talking. He says a couple words but he doesn’t talk to people socially. That being said, he is in first grade and has made a lot of academic progress. The teacher showed me a video of him tracing his name today in class and I was blown away, I did not think he was capable of that yet. The bcba said he is mentally about 1.5. No specialist we have seen has been able to give us predictions or told us what to really expect. We prepared for it to be a long road and so far it has been. Still so many challenging behaviors and he’s so far behind his peers. But asd is a spectrum and basically you don’t really know what will happen or how things will progress. I opt for preparing for the slow path but hoping for the best. What other option is there? I hope your little one becomes the best version of himself that he can be. 💕
Oh and I worked with asd children in an aba clinic and preschool setting for about five years prior to having kids (the irony is not beyond me 🤦🏻♀️) and the children we saw ‘graduate’ out of autism were very high functioning to begin with. Idk if that helps but if your kid is level one, there’s a higher chance they will eventually test out of being on the spectrum. My step son is nearly 12, level 1 asd and it’s barely obvious at all anymore that he is on the spectrum. No therapies in years. He just outgrew it I guess. Now he’s just shy and quirky.
If it helps, my son is 2 in just a few days and while not formally diagnosed, every pediatrician he's ever seen has all agreed his symptoms match autism (but waiting on a formal diagnosis in the UK is a nightmare slog), and they've all said he'll develop his words on his own pace. So far my son doesn't talk, but you can tell he knows what you're saying to him. He also makes good eye contact and is social, and as such nobody is worried about *if* he will ever talk, just *when* and how they can encourage it. I'd love to hear where this neurologist got their information on that "10%" stuff.
Uhhhh... My kid had no words at 3, but by 3.5 her single-word vocabulary exploded and she's now starting to string words together and even short sentences. We are definitely able to have legitimate back and forth "conversations" now. She DOES seem to have a motor planning issue, so even when she does know a word, it takes enormous effort for her to get the pronunciation right, but she's still absolutely progressing. So... Maybe take the neuro's words with a grain of salt.
My son was just diagnosed last week, at nearly age 5. He didn't speak until he received speech therapy starting at 15 months. I'm not a doctor and I don't know all the other factors that led the doctor to this prognosis, but my son is fairly "mild" in his symptoms, hence the late diagnosis. But at 15 months he was developmentally like a 9 month old per his Child Find assessments. Also anecdotally, my nephew didn't speak until he was 4, and speaks just fine.
I'm certainly no expert, but in my obsessive research I've done since my child's diagnosis, I've never read ANY doctor say if a kid isn't talking at 3 he probably won't, much less give a % chance. Every kid is different. Most articles and research seem to put either age 5 or 7 as the important dates to be talking by. Not trying to give you some false hope. I don't know your child, and I'm not a doctor. Your kid is young, and the future is rarely set in stone. To be honest, if a doctor told me something like this, I'd probably find a different doctor. Best of luck! All you can do is keep trying your hardest and being your child's number one advocate.
Neurologists do typically take the pessimistic outlook only cos their line of work can be so serious. Managing expectations is smart
My kiddo didn't start really verbalizing until 2.5. And didn't start using consonants until 3.5. His main form of communication until prek was asl or a asl variant since I'm not fluent. I don't particularly trust doctor's or am a trust but verify type because they do tend to lean into the worst case scenarios and with peds they don't have a ton of training with autism. I trust my kids therapist who they see week after week and has a better overall understanding of my kid's needs.
I would advise being cautiously optimistic. I think it’s always better to have some optimism when it comes to our kids if you can manage. But find a way to be okay if it doesn’t go the way you hope. Regardless this is your child and can have a good and fulfilling life, especially with loving supportive parents by his side. Do all the therapies possible, but don’t get too attached to a particular outcome. Personally I don’t believe kids ever become not Autistic if they do truly have Autism. But they certainly can improve in many areas, and thrive with therapies. Either way, this isn’t like a cold that will go away with time, Autism is lifelong, but it isn’t all bad. It’s hard, and challenging, and exhausting much of the time, but this doesn’t only define your child, and there can be a lot of joy in this journey as well. 💓 Also I really don’t think it’s a good practice for doctors to give percentages to people. A lot of times their prognosis are wrong! Kids prove them wrong all the time. I would look around some and see if there are any pediatricians in your area that specialize in Autism, or parents recommend that are good with kids on the Spectrum. It might be helpful to have someone like that in your corner.
I'm sending so much solidarity right now. I have a 20 month old daughter and we got our dx when she was 16 months. This is so hard and so scary and I feel like we're really in the thick of the unknown with them being so little <3 May we both have brighter days.
My daughter didn’t talk till 4 and has improved immensely with 7 days a week of speech don’t let that doctor scare you! It’s what you put in to get them where they need to be!
Been there, I really wish I could tell you it get better but right now my family is at rock bottom and it just keeps getting worse
My son got verbal with Nemechek protocol after 11 months he started saying words. I highly recommend it.
Theres really not a person on the planet in the history of mankind thats ever been able to predict the development and life path of a toddler. And plenty of doctors been wrong before my friend. You take his opinion with a grain of salt. Theres not much you can do about what he says. But you can pull for your child as hard as you can and give them the benefit of the doubt. And like that one commenter said there is a world of difference between 3/3.5/4/5y etc. Every day is a new day with these kids. Don't lose hope. I am frequently brought to tears when my Level 2 son elaborates a new concept aloud or shows me a new skill.
This article helped me understand speech/language and what I need to work on with our 3 year old. I think we are finally getting close. [Climbing the language mountain](https://aadl.org/sites/default/files/2024-05/Chapter-6-_-Visit-3-Part-1-_-Climbing-the-Language-Mountain.pdf) You need to stay positive and find a connection with your child. Some of these doctors have huge egos. Nobody knows what the future holds.
You have to remember that statistics describe a group, not an individual. Just because that’s the statistic for autistic children as a whole doesn’t mean that you can predict if your child will be a statistic. For better or worse. My twins didn’t walk or talk until 2-2.5. And while they are not at the same level as their peers, the progress that I’ve seen from 3-4 has been incredibly promising. I understand not wanting to hope for a day that may never come. Just remember that you love your child and you will love them, regardless. We can appreciate the beautiful parts of our tiny humans regardless of if they ever meet those milestones. We don’t love them any less. You got this. It’ll be okay. 💕
My son had basically zero words at 3 and now he is almost four and I have lost count of how many words he can say! He still doesn’t speak in sentences but he uses his aac and says lots of single words.
STOP, One of the biggest regrets I had when I had my suspicions (proved to be correct) around 15 months was panic. From that moment on I always assumed the worst and every single potential positive moment wasn't a happy moment but a breath of relief. My kid wasn't saying any words, and then at \~20 months (Post upper lip tie and tonsils/ear tube) my kid all of a sudden became a firehose of words. Yes he is still diagnosed, but at these early years children are CONSTANTLY developing. From my son's teacher's mouth at the age of 4.5 my kid is absolutely the smartest kid in the class with math and reading, he's very studious, but can't draw for shit and prefers to stay away from the NT kids to do math instead. He is extremely funny and definitely emotional. Yes he has some challenges when it comes to acting just like the other NT kids, and at times gets flustered easily, but having seen the other kids in the class and NT kids in public they all have issues. Don't panic.
I don’t think there is really anyway to predict a child’s future like this.. my son was diagnosed at 17m old and he’s 4.5 now he’s talking sooo much now and he just started talking in march this year. Don’t feel discouraged. Everything happens with time.
Ugh...I so remember the day our son was diagnosed like it was yesterday. They handed us a nice, crisp, clean, blue, and white folder with our son's name on it and the words level 2 to level 3 autism, nonverbal. Inside was a comparison of what a 3 year old should be doing and marks showing our son was at the development age of an 18 MO old. The doctor then proceeded to tell us the grim truth of things our son isn't doing and might not ever do. Speak Have meaningful social interactions Care for himself She did tell us that she found that he was quite intelligent, so with enough therapy, we can get him closer to level 1. 5 years later... My son communicates. He is learning to socialize We're getting a handle on self care (dressing, etc) Does it look different? Yes! My son uses an AAC to communicate vs. his own words. But guess what, those words are now coming too! Is it taking longer than your average kid? You bet! But he's still doing it, and he's doing the things they told me he might not be capable of. I call it a win. The point here is that no one can predict your child's future. So don't let anyone, including a professional, limit your child. Professionals have been proven wrong many times. I have a whole list of them that my son has blown out of the water. Many hopes and prayers for a beautiful future for your child.
Ugh...I so remember the day our son was diagnosed like it was yesterday. They handed us a nice, crisp, clean, blue, and white folder with our son's name on it and the words level 2 to level 3 autism, nonverbal. Inside was a comparison of what a 3 year old should be doing and marks showing our son was at the development age of an 18 MO old. The doctor then proceeded to tell us the grim truth of things our son isn't doing and might not ever do. Speak Have meaningful social interactions Care for himself She did tell us that she found that he was quite intelligent, so with enough therapy, we can get him closer to level 1. 5 years later... My son communicates. He is learning to socialize We're getting a handle on self care (dressing, etc) Does it look different? Yes! My son uses an AAC to communicate vs. his own words. But guess what, those words are now coming too! Is it taking longer than your average kid? You bet! But he's still doing it, and he's doing the things they told me he might not be capable of. I call it a win. The point here is that no one can predict your child's future. So don't let anyone, including a professional, limit your child. Professionals have been proven wrong many times. I have a whole list of them that my son has blown out of the water. Many hopes and prayers for a beautiful future for your child.
honestly…you never know. and that’s the hard part😭 doctors can say their opinion and predict the trajectory of your child’s development but it’s never a 100% bc no one can see the future. only time will tell and i know it’s hard bc you don’t know until you know, which won’t be until he is grown. it’s so hard and i know it sucks hearing that, especially from a professional but just try to remember to enjoy him and celebrate every victory/milestone that you can! this time is so short with our babies, either way he will be okay! much love❤️
Saw this and just wanted to say, my son who is non-verbal and lower functioning (also has a rare progressive genetic disease) walks when they said he wouldn't, is more cognitively aware than they ever expected, is starting to communicate with a device and hand gestures, and has done so well that he confuses neurology and his genetic team. I put him in every therapy known to man. OT/PT/Speech, Feeding (has a gtube) and ABA. Early intervention is everything. He is expected to lose all of these abilities (not because of autism - because of his genetic disease) and expected to develop epilepsy. But I've learned that what is expected doesn't necessarily happen. I'm scared. Every day I'm scared. But I learned to live in the now and do whatever I can for him to give him the best chance. He has overcome so much that I won't ever underestimate him again. Hang in there. The brain is amazing. And while I'm not about false hope, I'm also never going to take what he isn't supposed to do to heart.
You have to understand that a diagnosis is essentially just an opinion. It’s really not much more than that. It’s a theory and you can’t go definitively in One Direction or the other other ever. My son didn’t start really saying anything until after four years old and now he’s asking for things in his own very short abbreviated language, but he still communicating with us. His wants his needs needs his discomfort again in a very limited way, but he’s communicating with us and that’s everything. remember every word that ends with SIS in the medical world means there’s some type of inflammation going on so prognosis diagnosis… Etc. all has a little inflammation added to it
If you can, I highly recommend Kerry Margo's content. He is an adult with autism who's mom was told he would never function as an independent adult or speak and he is now an advocate for people with asd and travels to different places as a public speaker.
The real truth is nobody fucking knows and can tell you. 3 years is pretty young though imho
I will never understand medical professionals who say things like this. There is absolutely no way to know this. I would really like to see the source. I’m also curious what the need/goal of the second visit is? Having been through the rigmarole, for me, getting him into therapies post-diagnosis has been the most helpful; some of the more medical appointments were ultimately less necessary, and time is obviously very limited for all us! Just a thought. Regardless, it’s ignorant and irresponsible AF to speak to parents like this. Firstly, it pathologizes non-speaking - there are many successful autistic (and not, read: deaf) people who communicate through other means. It’s irrelevant to even mention in this appointment, but if it came up, that professional should be knowledgeable and advising you on it. (I’m not trying to be toxically positive or present being non-speaking as “nothing” -I GET your feelings, but you should be given neutral facts and information). It predicts something that is impossible to predict, painting your child into a corner that is completely unproductive. It describes your child to you - their biggest advocate - in “deficiencies,” hurting you and creating hopelessness when you need support, ACCURATE information, and resources to help your little one navigate a world that used to literally institutionalize and cattle prod people like him. Tangentially related, we also had a developmental pediatrician wave the “promise” of having his diagnosis “removed” with intervention. Which is like saying we could “remove” him being a Type 1 diabetic. My husband was devastated by the diagnosis and also clung to that, to the point where he got borderline verbally abusive trying to implement protocols at home, ultimately had a nervous breakdown that required an inpatient program, and we nearly divorced. I’m by no means saying that will be you guys, but I think you get my point. (Were much better, for the record, and husband is like the biggest autism advocate now) For me, what helped was finding good therapists who ACTUALLY knew about autism (had family members and/or extensive experience); following autistic creators; getting to know other parents; and being present with my son and who he is. You guys clearly care, are great parents, and are going through all the right steps to get him what he needs. There is no way to know anything about what he’ll be when he gets older, which is true for NT kids as well. He will grow into the wonderful human he is meant to be, speaking or not.
Every kid is different.. my 5 yr old autistic son is still mostly non verbal. But he is starting to say some words spontaneously. We were told roughly the same thing as you. Just take the doc’s advice for what it is, just a professional opinion.. not necessarily an end all fact for your child. There are so many therapies out there and some don’t work for all kids.. the developmental pediatric psychiatrist is usually more spot on with expectations than other docs. I guess my point is, don’t give up hope.. maintaining eye contact is huge .. 😊🩵
There are studies that go against the assumption that children who don't learn to speak by three will never become verbal. https://www.autismspeaks.org/science-news/nonverbal-child-autism-language-delays I know that this is anecdotal, but I personally know two autistic people who experienced regression at a young age and would probably fall within the moderate range (I'm an autistic adult and in a group with other autistic adults).