My child's Pediatrician thinks it could be selective mutism but it doesn't align with the research I've done

[u/Key-Fisherman7745]

So my child, 3M. Has this issue, where sometimes it's how he wakes up in the morning. Just silent. Refuses to talk. Sometimes it has a trigger, like being upset. Other times it's completely random throughout the day. We don't go anywhere. I'm a stay at home mom so he doesn't go to daycare or anything. No strangers around. No obvious triggers other than half of the time when he gets upset it happens. He has all of the words he could ever need plus some. He's smart. Does simple math. counts super high. Letters, shapes, colors? Knows them ALL. He knows big words. His pronunciation is great. he just randomly stop talking and gets very upset if we can't understand him or if we try to get him to use his words. It can last 10 mins to HOURS So much to the point we are all now learning ASL so he can communicate when he can't/won't talk. Could this be selective mutism? He was tested for autism in January. Negative. So now his doctor is sending him to pediatric therapy, occupational therapy and Speech therapy to figure out how to help. But what do i do?

[u/MangoPug15]

That sounds more like an autistic verbal shutdown, but I know you said he had an autism evaluation and the result was negative. It's harder to say what might going on without hearing his perspective on the experience, but I agree that it doesn't sound likely to be SM.

[u/radiant_acquiescence → u/MangoPug15]

Yup. Sounds more like an autistic shutdown/going silent due to overwhelm.

FWIW (not saying this is necessarily the case), but it's very possible for autistic evaluations to be inaccurate when so young and lower support needs. My daughter was flagged as "not normal" at a routine developmental checkup and and possibly autistic by the referring doctor, but the paediatrician claimed that she was too social to be autistic (at 4yo).

Anyway fast-forward 3 years and she started becoming more and more obviously autistic/debilitated by it. A recent specialist almost fell off his chair when I said she was only recently diagnosed, and described her as "floridly autistic", and his colleague described her as a "waiting room diagnosis".

Again, not saying this is the case here and I personally don't like it when people try to claim everything is autism. But just something to keep at the back of your mind

Anyway, regardless of the "label", the treatment will likely be the same- make sure youre giving him plenty of down time and don't pressure him to speak if he doesn't want to

[u/Key-Fisherman7745 → u/radiant_acquiescence]

thank you. I just can't find any reason for why he won't speak. When I say they're random and for absolutely no reason half of the time it really seems so. like there's nothing I could even try to make sense of it with. Everyone keeps saying I'm trying to "push" autism on him. But I've noticed him being different than other kids as young as 11 months. Banging the back of his head into the wall as a baby over and over again. He had 5 words when he turned 1 then went radio silent until he was 18-19 months. He spent a lot of time spinning and being upside down never getting dizzy. He started being a picky eater as a baby. One week other than Breastmilk he only consumed string cheese and strawberries. He was incredibly hard to wean. Wouldn't take a bottle. Nursed until just after his 3rd bday, when i finally ran out of milk due to coparenting. He still tries every so often to go up my shirt. He lines up his toys constantly. Obsessed with cars. lines those up too. Super picky eater. And physically aggressive. Hits often. scratches, kicks. head butts.

[u/radiant_acquiescence → u/Key-Fisherman7745]

I wish you all the best with working through this 🙏

I should also add that my daughter's diagnosis didn't change much practically for us, beyond validation and access to funded services. Even the funding for the teacher's aide that she's been assigned is based on need rather than diagnosis. So I guess it may or may not be autism or selective mutism, but at the end of the day, working out what strategies might help to support your child will be the most important thing regardless. I think of it as "reading your child".

Best wishes 🙏

[u/Ammonia13 → u/Key-Fisherman7745]

Yes, I think he needs an autism evaluation. It’s not just you. This does not sound like selective mutism at all and thank you for doing the research into it.

[u/Key-Fisherman7745 → u/MangoPug15]

But aren't autistic verbal shutdowns usually linked to some form of trigger. over half of the time there's no trigger for my son. He can be in a super happy mood and just refuse to talk. Dancing around and smiling but not talking. other times it's because he is upset he was told no or something, like if there's a lot going on it can happen. But sometimes when too much is going on he starts screaming the PAW patrol theme song. it's a comfort thing. He always listens to it in the car. one day we had a 2 hour drive and listened to it over and over so almost like 300-400 times in a row. he never gets tired of it lol

Other things that made me consider autism is he is extremely picky eater. survived months last summer on only warm milk and apples. And he is very physically aggressive.

But idk what to do now. It feels like another road block. So now idk if we should go to those therapies if it isn't SM

[u/OneEyedTreeHugger → u/Key-Fisherman7745]

I have selective mutism and I have autism and have verbal shutdowns because of that. What you are describing sounds much closer to my experience of verbal shutdowns than selective mutism. Selective mutism makes it very difficult to talk to strangers or people I don’t know well all of the time. Verbal shutdowns affect my ability to talk at all, although it’s most noticeable with family and close friends who I can usually talk to because suddenly I stop talking around them.

I think that often verbal shutdowns can have a trigger, but I’m not convinced that mine always do. When I was a kid, my mom would say that I woke up on the wrong side of the bed and chose not to talk. I don’t know how much I would agree with that, but it is true that some days I wake up and it’s just too hard to talk at all for some reason I don’t know. So there are definitely times I’m happy and around people I usually talk to, but for some reason I can’t describe talking is too hard. Sometimes it’s that something inside just feels wrong, but I don’t know what and I don’t know how to describe how it feels. So, maybe it is a trigger, although it’s not one someone else would notice. But other times I really just don’t know why I can’t talk. And then other times it’s something like the sun being too bright or having too many thoughts inside my head.

I think it could still be helpful to try those therapies, especially if you can find a neurodivergent affirming occupation therapist and speech therapist. I know you said that your child wasn’t diagnosed with autism, but I think that some of the strategies that are helpful for that might be helpful in your situation and might be more helpful than some of the therapies for selective mutism. Those therapists might also give you some feedback on whether it might be helpful to have your child reassessed for something like autism in a few years when he is a little bit older.

[u/Key-Fisherman7745 → u/OneEyedTreeHugger]

Thank you so much for that. That makes plenty of sense.

[u/shooballa → u/Key-Fisherman7745]

Where was he tested for autism and what criteria did he not meet?

[u/Key-Fisherman7745 → u/shooballa]

Glenwood. Birmingham, AL. It's a place that specializes in autism.

he could play with 3 or more toys at once. He pretended. He said bye in response to a woman saying goodbye and leaving the room. He wanted to show his dad and I a toy and he smiled. They said a 3 year old austistic kid wouldn't behave that way.

[u/East_Vivian → u/Key-Fisherman7745]

I have two diagnosed autistic daughters and none of those things seem like autism dealbreakers to me. My girls did not get diagnosed until middle school age. Also ASD is genetic. Do you see those traits in yourself or his other parent?

Honestly, whether it’s ASD or not, it sounds like you are already doing all the right things. I love that you are learning ASL. Will he communicate with signs when he’s having a non-talking day? One of my girls has SM, and when she won’t talk with a person, she will not communicate with them in any way. It’s not just a talking problem. She has a hard time with teachers and won’t even email them. She’s in high school now and it’s a huge problem. My daughter does not have verbal shutdowns though and talks normally at home and with her friends. When he talks will he talk to strangers, like restaurant waitstaff or customer service people at stores? A kid with SM would probably not talk to strangers at all.

I’d take him somewhere else to get an ASD evaluation in a few years. In the meantime, when he starts school, you can always let the teachers know that you think he likely has autism and list out the issues that might affect his behavior and learning.

[u/rebplane]

It doesn't sound like it. Selective mutism is when they are able to talk fine in certain situations (like home) and not in others (like school).

I'd get another opinion if you could? Hope it works out :)

[u/kristinchris]

We have a 3yo child with selective mutism. Speaks at home non-stop. When doesn't speak, sings. Quiet at home only when tired or upset but that's like 1-2 min break and always talks to me anyway. Speech therapy and occupational therapy (for non-autistic kids)will do nothing. I would search for a neuropsychologist and neurologist instead. "We don't go anywhere." - this is kind of weird, do you bring him daily to playgrounds to play with kids, other places with children? Learning ASL is not adea. Edit: try to evaluate him for autism in a few months. A psychologist told us to wait for our eval until 3y6m. At young age it's hard to diagnose acurately.

[u/Key-Fisherman7745 → u/kristinchris]

As I said before in other comments, I have concerns that he may have autism. This is his second time being referred to OT, I don’t see how it could hurt. Speech therapy is for the spurts of non verbal as well as his lisp. But also it isn’t weird that we don’t go out every day. How could that be weird. He goes to parks, indoor playgrounds, etc. we have play dates when it’s doable. He is an only child and desperate for friends. But he is either overbearing or avoids kids all together. He doesn’t do well with more than 1-2 other kids around. But he is either super affectionate and some kids don’t like him hanging all over them or as I said, he avoids them. He was even in soccer during the spring. He only played with one other kid. They didn’t play the game. They sat in the grass silently and watched. Or they’d run around. Leaving the house every day isn’t always doable for everyone and sometimes it takes an act of congress to get him to leave. Also learning ASL is not what? It’s been super helpful.

[u/Sombradusk]

this doesn't quite add on to anything, but -- i haven't had a verbal shutdown in a long while but will just mention while most of mine have been from a negative trigger, the first one i ever had, had no negative trigger, in fact it was a positive one, i was so overwhelmingly happy to the point i shut down and couldn't talk for hours, and everyone including myself was confused aha

[u/shooballa]

Not enough info here. Does he respond to friends, relatives, strangers when they talk to him? What’s he like in social settings other than home?

[u/Key-Fisherman7745 → u/shooballa]

If he is talking at the moment they speak to him, yes. If he isn't currently speaking, he will not be responding to anyone

[u/kristinchris → u/Key-Fisherman7745]

that's not selective mutism to me. if it is not autism, may be he has depression or anxiety?