21-month-old – speech delay, word loss, glue ear, reflux history, possible allergies – unsure if autism or something else. Looking for advice/support.

[charlotte444]

Hi all – I’m feeling quite overwhelmed trying to figure out what’s going on with my 21-month-old son. He’s had a tricky time with health and development, and I’m not sure what’s a delay, what might be sensory, and whether autism could be part of the picture. Just looking for advice or to hear from anyone who’s been through something similar.

Amongst some scary early health concerns with his liver, he had severe silent reflux for a long time (now mostly resolved, was on omeprazole), confirmed CMPA and soy/oat intolerance – he often seems uncomfortable or unsettled after food. Glue ear has been confirmed twice, four months apart. We’ve got a third appointment in three weeks and then I assume we’ll be waiting for ENT and possibly grommets.

Speech-wise, he used to say “mummy” and “daddy” but has stopped saying both, which worries me. He babbles a lot but it’s very repetitive – mostly “d” sounds. No clear words at the moment. He does point a lot and brings us things to share which is great, and he nods and shakes his head, but doesn’t clap or wave consistently and doesn’t imitate us much. I'd say he waves around 30% of the time when you encourage it.

Socially, he’s affectionate and smiley – loves cuddles and sometimes gives kisses. He makes some eye contact (maybe 50–60%) but it doesn’t last long. He often shares things with us and gets us involved in play, but is also very easily upset and frustrated, especially if something doesn’t go the way he expects. He has some repetitive play – lining things up or spinning – especially when he’s tired or overstimulated. Physically he’s doing well – walked at 12 months and now climbs everything in sight. He answers to him name ocassionally and normally with other people not me which I am worried about.

He’s always been highly sensitive and seems dysregulated – we sometimes put it down to teething or allergies – but nursery have said he’s more difficult to settle than others his age and one nursery worked suggested autism might be something to consider (off-record). My family doesn't agree with me.

We’ve only just started private SALT every 2 weeks. The therapist has said he’s behind but has good joint attention and social intent. He scored 4 on the M-CHAT, so medium risk. The HV won’t come out until he’s 2, even though I’ve raised concerns (and cried to them!

I’m stuck between wondering if this is autism, or a speech delay made worse by glue ear, reflux, and a rocky start. Or just a sensitive little boy who’s developing at his own pace.

Would love advice on whether to look into private OT (it’s so expensive but I don’t want to wait), and whether there’s anything else I could be doing while we wait for audiology, ENT, and paediatrics. Has anyone else experienced speech loss at this age? Did the words come back? I've contacted some private ENT in Bath where I live but it's only for older kids.

Does nyone know if autistic children and more likely to have glue ear, reflux and allergies?

Thanks all xxx

Hi, I can relate to some things, my son is 2.5 years old and he knows a lot of words but doesn't speak much but he babbles a lot and he sings all the words to songs which amazes. But he only developed this like 3 months ago. He never called mommy and daddy but if you asked him who we were he would say it. His eye contact wasn't great but now it's good I also encourage him to look at me every time I speak directly to him I ask him to look at me which he does. He used to not express anything when he was hungry, but now he will ask for fruit or chips and I will know he wants to eat. He now asks for water as well, will call me to show me things. But he also gets frustrated easily like with little things I found that having no screen time at all helped a lot, he's so energetic and curious so going out and giving him new things to experience helps a lot too. He also didn't point at all until he was 2 now he does, but he has a bit of a hard time when I point to something he finds it a bit hard to follow but usually gets there. The name calling was also a concern to me because he would like turn around 50% of the times when called and only turned if we said we had something to give him. But that also changed. I was contemplating autism but everyone around me told me he was too young and to give him time. Would recommend the same as at this time is he's still young to be diagnosed with anything. I wish you all the best x

Thanks so much for sharing – that’s really helpful to hear where your little boy is now. Amazing how much can change in a few months.

Did he ever have reflux or glue ear? I keep wondering if some of this is from my son’s rocky start but it’s so hard to know what’s what. He says a couple of words like no but he sounds quite muffled.

Have you done anything else to support him, like SALT, OT or anything sensory? I’m torn between giving him space to develop and feeling like I should be doing more while we wait for ENT.

Interesting about the screens - we sometimes need an hour or so a day as he often gets extremely upset when he wakes from his nap and Peppa pig is one of the few things that can stop a huge meltdown (and gives us a break!) xx

Ds had bad glue ear.
He's also been diagnosed with ASD and ADHD.

His glue ear started at about 10 weeks, and he had three lots of grommets, and it was only about age 12 ENT started saying the glue ear was improving to a point they thought he might grow out of it. At 11yo they'd been saying he might be one of the few who never grows out of it.

His speaking was okay - a little unclear but he spoke well. I thought he didn't, but the HV laughed at me (nicely) and said it wasn't he was bad, merely his sisters were very good. He did have good eye contact, and babbled beautifully as a baby - better than his sisters.

I started questioning ASD/ADHD around 4yo. Each time I got one of two responses:

1. Behaviour with glue ear is very similar to ASD behaviour (they're in their own little world, sensory etc)
2. He's a summer boy "he'll grow out of it"

He did get better, still didn't like school and was always the wriggliest in his class at assembly etc, but not so bad that any of the teachers said they had concerns, and dismissed it when I asked. Some expressed surprise I was thinking of ASD. Academically he was doing fine, and he'd got a nice group of friends, so nothing really bad, but I still wondered.

What happened then was a couple of things when he was 12yo. His drama teacher, very knowledgeable about ASD) said she could definitely see traits. And then he was invited on a small trip at school, leaving at 5am. He was the youngest boy, most of them were older girls, so a little on his own. The teacher called them for a quick talk before they left, and 19 children stood and listened... and one (ds) skipped round the edge as they talked, shaking his arms... he said he was just cold.

But I decided that really wasn't age appropriate and went to the GP and requested a referral for ADHD. Covid happened, school apparently couldn't work out how to fill out a pdf form and return it, so it ended up being the drama teacher who helped with filling out forms. I sneakily looked at the form after she had done it (mine had already gone in) and was struck by how similar our forms were.

So they got back and did an initial assessment and said they didn't think he had ADHD, but did want to assess him for ASD.
So he had that assessment, and they said as the assessment finished that he was just on the line and they had to decide if he would be diagnosed with ASD or "NT with ASD traits". The phone call where they said he was diagnosed with ASD was such a relief to me (and him too) but they said the assessor recommended an assessment for ADHD too, and when he had that, he was diagnosed with that too.

He's 18yo, got a lovely group of friends - all a bit quirky, but great. He has a set of interests, and has just finished A-levels and is hoping to go to uni. He has some allergies, big one is dust mites, but he's also allergic to "magic cream" (the stuff they use to numb the arm for blood tests) and probably cats.
He's inclined to understate pain (when he had appendicitis he was nearly sent home by the surgeon because he told them his pain was 2/10; and when he broke his wrist at school the PE teachers were gibbering with embarrassment because he'd told them it didn't hurt, did the full range of movement - and finished the football)

If I had the time again, I'd be pushing for a diagnosis much earlier, and not letting them fob me off. It wasn't just good for me to know when dealing with him, but also good for him. He said to me "I'm not just the naughty boy. I have a reason".
Although he also said to me "not I have an excuse to be anti-social" and I replied "no, you now know that you have to work on being sociable" and that's the way we've played it. He does have times when he does put defences up, or avoids things and that's fine.

But he also knows that he has to sometimes work with his ASD, for example at MIL's funeral I told him he could choose whether he wore smart shorts and a shirt or trousers and collared t-shirt (he very rarely wears trousers as he finds them uncomfortable). He chose shorts. However when he did some work experience and he had to wear trousers he wore them without complaining (even if he did try on every pair in Next before we found some that would do!).

Thanks for coming back @MargaretThursday it certainly does sound like the earleir you get some help the easier it is for the child & parents.

Booked a GP appoointment - in a months time haha so will see what they say🤞

He's just started walking intermittently on his tip toes - it's so hard because some of it might be NT behaviour