21 month with no speech and no understanding

[Hoth]

Hello,

Looking for some advice from parents that may have been going through the same as me with my little boy.

To start he is such a lovely boy. Very friendly, gives the most amazing hugs. Loves rough play with with his brother and playing ball.

I never worried about his development up until about 18 months when I noticed he wasn't progressing with language. He babbled as normal and points to things he wants, even though lately he is doing more hand leading.

My concerns are that he doesn't follow any instructions. I don't think he understands anything I say. He has no words at all.

Very worried mum.

@Nortam My DS is the same. He rarely responds to his name and won't point to any body parts. It's like he just couldn't be bothered with language

Mine is very similar.... I don't know if it is selective hearing or if he simply just only understands those limited words.

Do you have other children? I have 3 older. Dc2 who is now 10 is autistic/ADHD so I always have that at the back of my mind. DC2 wasn't this developmentally behind though, which worries me.

I have I other older child. He met all his language milestones on time so this time around it is totally different.

Does your older DC do a lot for your youngest DC, as in get them what they want, tell you what they need? I didn't speak until I was about 3.5yrs because my older DB did everything for me and was basically my voice..... until he went to school and wasn't there through the day anymore 🤣

Unfortunately he doesn't. They don't get on very well.y older child has no patience with him and gets annoyed when he takes his toys.

@Hoth does your DS have any delays in other areas of development?

@Nortam He met all his gross and fine motor milestones such as rolling, crawling, walking on time.

He is also delayed in his play skills. Will engage with different toys but not really playing with them as he should. He also has no interest in books.

My little boy was very similar at that age, he had absolutely no words though. He was diagnosed ASD before he turned 3. Of course it doesn't mean the same applies for your son.

I would still recommend looking into getting him into a specialist nursery, he doesn't need a diagnosis to attend.
Look into Portage too if that's available in your area.

As a family I would recommend engaging with him by copying things he likes doing to get his attention. I wish we were told to do that in the early days. We spent so much time trying to engage with him in ways we thought he was supposed to interact and play and he had absolutely no interest in it.
By copying his actions you'll be building a connection and trust which will hopefully encourage him to communicate more freely with you (and not just to fulfill his basic needs but to have fun playing with you).

Good luck!

@Blablasheep would you mind sharing a bit more about what your DC was like at this age please? Mine has zero words and very limited understanding but a lot of other signs of asd too.

following along as I have similar concerns about my 18 month old. Have just contacted GP today for a hearing test. No response to name, she doesn’t follow any instructionsp, no gestures clapping, waving, pointing etc.
I know she is still young but do know she should at least be clapping etc by now.

How does the hearing test work if anyones had it or has any advice?

It was very obvious my little boy was "different" very early on, I started getting suspicious before he turned one.
It got more pronounced as he was getting older.

When he was 18 months he had absolutely no words, lots of vocal stimms but no proper babbling, no interest in any people, not even his own family.
He didn't understand any words (so didn't answer to his name, if I asked him something he would simply ignore me).
He didn't point, clap, wave, imitate, he didn't show us things... He didn't really play with toys, he would only throw things on the hard floors to hear the noise they made.
He only watched 2-3 cartoons, over and over again.
It took him ages to fall asleep and then he'd be awake for hours every night.
He didn't want to walk anywhere, had no interest in playgrounds. He loved watching cars drive by though.
He was constantly constipated/or had diarrhea which sorted itself out once we removed milk and gluten from his diet.
He would flap his arms and legs (when sitting down).
He was mouthing everything (never actually tried to swallow non food items, he would just bite them then discard).

What I found the most difficult was that it seemed like we couldn't really connect with him, sometimes it felt like we were there to fulfill his most basic needs and nothing else.

My ds is now nearly 28 months. He still has no words. He is making very very slow progress with his understanding. He unfortunately regressed in a few areas. He no longer says any words and stopped gesturing....pointing, clapping and waving.

We have been referred for an ASD assessment but that could take a year or more. We attend a private speech and language therapist.

I'm a bit lost. Not sure what else to do for him. I'm very scared for his future.

@Hoth no advice but big hugs. My DS1 was behind with speech and showed signs of ASD from the age of 2. He attended SALT classes and that really helped.

The ASD suspicions turned out to be delayed social development. However, I was really glad to have the referrals made so that, if he did have an ASD, he would hopefully receive help sooner rather than later.

I hope you and your little boy get the support you need. It must be a very worrying time for you.

Sending big hugs.

It's always so much scarier when they are babies/toddlers. I found it gets easier as they get older and the progress can be made.
There is so much help out there and parent support networks. I found it very isolating but now it's much easier to find people in similar situations who just get it.
That's your best bet.
Referrals are in place already which is amazing. So it sounds like you have been as productive as you can.

PEC cards are great for non verbal. And lots of apps to help the child communicate. I don't have non verbal child but have researched ASD over the years.
Progress is slow, but does happen. Have you got a supportive partner ? Sending hugs your way

Sorry to hear what you are going through. My DS was also very severely speech delayed though did have decent understanding (even though NHS SALT refused to believe this).

A few suggestions (sorry for length)

1. I found a book called “Engaging Autism” by Stanley Greenspan v helpful. It describes the approach also mentioned by a PP above ie get involved in what your DS is interested in and engage him from that starting point rather than try to get him to do what you think he should be interested in. If he is engaging in a repetitive activity do it next to him, share his joy, playfully obstruct if he will tolerate that. A game changer in terms of encouraging the desire to interact.
2. Does he not understand or does he just not see any point in following instructions? ASD kids aren’t socially motivated so are less likely to perform on cue. I was mostly sure at age 2 that DS understood many things (at that stage, with some delay) but he absolutely would not touch his nose if asked or fetch his shoes. At age 3 I knew he understood (he’d get sad or surprised at conversations around him) but right up to school he failed every SALT language test because he saw no point in “bringing [her] the dolly” (he did throw it at her once though in annoyance at her demands)
3. if he has tongue tie I wonder if there could also be a physical impediment to speech. Many SALTs assume if a child is not talking it is due to lack of language but sometimes other things can be going on, co-morbidities are common (eg in my DS’s case motor signalling problems from brain to muscles not getting through) so if in due course you feel some understanding is there do push for other things to be ruled out. But kids need a certain level of social development (ability to copy) before they can be taught to talk so work on that too through play
4. You will need to choose schools in a year or so. Look into your options locally and you may wish to see if there are any mainstreams near you with a speech and language support unit. Ours locally are called COIN centres (communication and interaction). DS attended one and it was wonderful, the best of both worlds. I was initially dead set against him being in a specialist environment but it was the best thing we did. There was a high staff to student ratio, they had a dedicated SALT and did lots of signing and other support.
5. To get into such a unit you will need an ECHP. It’s a minefield but start early. We sent DS to a local lovely nursery 2 days a week and they helped guide us through all the forms. Would have been lost without this.

Above all don’t give up. DS ignored me all the time at your son’s age but did eventually learn to talk (aged 5-7) and is super cuddly now and chats all the time.

Is he in nursery?

Does he babble at all? A lot of the kids I am in contact with seem to start saying words at the 2 age mark, and it’s amazing to witness their language flourish.

does he make any sound at all?

Sorry, missed the part where you say he does babble.

I very much sounds like ASD

My DS had his tongue tie and it made such a difference with feeding. They did say it may also help with language with toddlers. It only hurts for a few minutes but so worth it.

OP do have a google at the new research around calcium folate supplementation and language development. Mostly used in America but my child with asd receives folate therapy on the NHS. FRAA is the search term. Feel free to PM me.

My 21 month old is exactly the same in that he doesn’t talk or understand. He’s totally unbothered about language. Doesn’t respond to his name. Didn’t meet any of the waving, clapping etc. milestones. The only things he understands is no, food (I think), bye bye and recognises his favourite nursery rhymes. Refuses to sign or even attempt to copy anything I do. He tells me what he wants like if he wants to eat his favourite snacks by taking me there then stretching his hand out, gives me his water bottle when he wants more, hands me the remote to change the video, cries next to his pushchair or the front door if he wants to go out. But he refuses to speak. If I talk to him really slowly or read stories and repeat words loud and clear he might focus on my mouth for a few seconds but for the most part ignores it and can’t be bothered. But he loves books and stories.

To be honest I wasn’t too worried before because I read up on ASD and he doesn’t seem to have any other sign except speech. He’s a happy friendly baby, always laughing, plenty of eye contact, loves giving hugs, I don’t think there’s anything out of the ordinary about his behaviour, I always just thought he was slow… but people in my family keep commenting and insinuating there’s something wrong with him which is getting to me. The only thing I’m really worried about is the part where he doesn’t understand me…

Since he turned 18 months he started babbling a lot more (before that it was hardly ever), and even now pretty much all day he’s babbling or making sounds. 2 days back I kept saying byebyebye and he sort of copied me saying bababa which is the most he’s ever done, I was over the moon. 2 weeks back he was watching ms Rachel and it sounded like he copied her when she said “bumble”, wasn’t very clear but he literally said “bumo” with no babbling but after that he never done that again. He really focuses on my mouth when I talk and it feels like the word is right there in his mouth but he won’t say it. In my heart I feel like it’s any day now, but then I think is it wishful thinking…

I’m going to contact my GP on Monday for a hearing test.

Any updates on your little one?

No specific advice OP, but if it is ASD, well done on picking it up and being pro-active with your concerns so early. Your little on is lucky to have you. I know its been a while since you gave an update but I hope everything's going well for you x