Glue ear or ASD

[angpat]

Hi, my 17 month old son has glue ear causing moderate hearing loss
he has delayed speech and language as a result , so babbling a lot and noises when he is trying to communicate but no actual words and no pointing to things yet. He does understand some commands
he had a speech and language assessment and they said they think it’s unlikely to be ASD as he had good social interaction , good eye contact with her, lots of shared interest and looking at us both when playing
he also played with toys appropriately
he does like to play by himself but he notices when he are not in the room and follows us , he looks at us to get a reaction when he does something naughty or funny
he responds to name sometimes but due to his hearing loss not sure if he can’t hear sometimes too
he interacts and notices other children and adults , feeds them , smiles at them etc
my concerns are he does have some “stims “ such as hand flapping when upset , spins in circles with his eyes to the side but only for a few seconds and he smiles at us when does it as to look for a reaction , he has some hand posturing I have seen to like crossing fingers , putting them outstretched etc
my question is wouod you worry about ASD based alone on the stimming /hands or could this be a sensory processing disorder due to the deafness ? and I should worry if it continues after hearing loss is sorted ? Anyone had this with their child and it turned out not to be ASD and related to deafness?
intereringly they don’t include stimming in the mchat!
thank you !

Hi,
My son is the same age as yours. At 6 months I noticed no babbling, no making sounds, no noise. I was sick with worry. GP referred us for hearing tests, earliest was April 2023, my concerns began Nov 2022. I paid privately for a test and he was diagnosed with glue ear last December in both ears. He reached all physical milestones on time, I was worried about his social development only. He was a very unhappy baby, cried constantly, clung to me, did not smile/laugh at all. I was an anxious mess. I started making a list of all my concerns and while he didn't hand flap, stim or anything like that, I was 99% sure there was something to it other than just the glue ear. After countless months of me trying to bring everything forward and pushing for all sorts (hearing tests, ENT appt, temporary hearing aid, grommet surgery), he finally had surgery in July this year. It was life changing for him. He speaks, copies sounds/actions is happy, thriving and such a joy to be around. He had a development review as he was deaf for over half his life by the time he turned 1 and the consultant actually said he is ahead in some areas now. While my situation is different from yours, I guess I am trying to say please don't underestimate the impact of hearing loss. My son is like an entire different person now and it is 100% because he has had the surgery and his ears are clear.
I hope all goes well for you and his ears are sorted soon.

Thanks for your reply ! Did he have delays in language comprehension eg following commands as well and pointing to things ?

No, he didn't. Although I suppose at 12/13 months he wasn't expected to understand a lot. No delays in pointing either. How does yours tell you what he wants? My main worry was that he would never speak/understand anything. I spent so much time reading/showing him books/playing/narrating everything (even when I knew he couldn't hear) because that's the thing with glue ear. It fluctuates. So at a hearing test, one ear would be fine but the other would be a problem. And then it changed. I could never really be sure whether he was hearing or not so did so many additional tasks just in case he could hear. He also has an older sister who is 1 year older and speaks really well. She talks a lot and bosses him around so he's picked up on how she speaks/what she is asking him to do and that has been helping his understanding I am sure.

So they confirmed twice he has moderate conductive hearing loss in both ears and he also had enlarged adenoids so I’m sure this is all contributing to his language delay as he hasn’t been able to hear properly for months , and I was told the stimming could be the compensating for this but who knows may just be temporary normal toddler movements as he is still so young ! We will see
he usually looks at something and cries or reaches for it eventually if he wants it but doesnt point much yet but I was told pointing is part of language development so if this is delayed the pointing will be too

Hi!
my son is similar to yours (ish) although no glue ear that we are aware of! He is almost 19 months but I raised my concerns at 18 months.
Our concerns;

• no words, babbles but rarely and not many sounds and not with prompt v often. Sometimes with encouragement will say ‘AH’ for apple, sometimes just won’t!
• started animal noises around 18 m/o but we’re still working on them
• wouldnt point to things he couldn’t touch.. he will now (started around 18 m/o) but it’s not always clear where//at what he’s pointing if that makes sense
• recognises when he’s asked some things like where’s xyz object or picture or person, but doesn’t seem to understand many commands, I think maybe 2/3?

and my number 1 concern/s

• Stimming, a lot! Started as spinning with eyes to the side, now it’s both spinning with eyes to the side and running past things with eyes to the side or moving his head looking at stuff out the sides of his eyes (his fave things are straight lines at eye level!) so he can quite happily circle a table for ages or run past the fence in the park rather than play.
• Repetitive play / behaviour. He is obsessed with balancing items on the arm of the sofa / at eye level and either stimming past them or just inspecting them, pushing them over and getting the next thing lol. His favourite items to ‘stim’ with being anything with a straight line, like a box, or shoes, funnily enough! He could do this all day I think.

I raised my concerns to the HV and she came round, observed and did some ASQs and even though she wasn’t ‘sure’ she agreed to refer him to a paediatrician for a development review/ assessment. Although it could take MONTHS.

all that being said, my son is a wonderfully engaging little one! His smile and laugh are beautiful and near constant. His eye contact / social interaction with us (his parents) is gorgeous (just no one else!), he will happily play with us or just cuddle / give kisses etc. he understands games like peekaboo and loves it. His animal sounds are super cute and he’s incredibly bright, his understanding of objects / colours is amazing!

I would urge you to raise any concerns you have with your GP or HV first, as it’s better to have them weigh in than worry in isolation X

Thank you for your reply ! Does your little one interact with other adults or children much ? I think this is reassuring if so?

“ @angpat Not really no! He is only just beginning to accept his auntie (my sister) who has seen him at least once a week since he was born. He’s also not very interactive with other kids; fine with them being around so long as they’re not around but just not bothered by them. He gets frustrated with his cousin who is 2 as she will take toys etc but he’s slowly coming round lol. He will always default to me or his dad though! That being said, he doesn’t attend nursery yet, all his care is by me or his dad and he doesn’t attend play groups since he finished baby sensory, so that’s possibly just due to lack of exposure? We are looking at nursery from April!
Does your little one attend childcare ? Or interact well with other adults / children?

Hi everyone, so my son just turned 18 months- he started walking at 13 months and since I’ve noticed he’s changed.

I’ve looked back at pics/videos from last summer just before he turned 1. He was laughing and smiling a lot, looking at the camera and interacting, giving us eye contact, liked being held and babbling away and responded and looked when I called his name.

in recent months from looking at pics/videos he’s not smiling and is generally more unhappy, does not look at the camera, doesn’t respond to his name. his speech hasn’t progressed and generally seems to have regressed.

I noticed for a few months when he started walking he’d walk/run with his head tilted back and moving his head to the side to rub his ear on his shoulders. I took him to get his ears checked and he had an ear infection and given antibiotics, I also took him for a hearing test, they confirmed his ear infection had cleared but now his other ear had fluid.

I took him to soft play today and he was babbling away, would go up to the other kids and didn’t seem bothered by them, was going up to the other parents but I’ve noticed he just has no interest in communicating or responding etc. I have taken his dummy out and noticed his babbling has come on in recent weeks….
the hearing test he did the lady said he was an awkward age and almost too old to sit still for this test but too young to do the next test up.. they said they’ll see him for another in 2/3 months time and in the meantime try and keep him away from getting colds which may affects his ears.

im hoping this is a case of glue ear and have read many stories where after surgery their kids developments really came on. I’m looking at going private to see a consultant for his Ears and paying private if he needs grommets to help. I’m so anxious he may have Autism and feel really sad for him

anyone have any advice?
thanks xx

See if you have any luck raising your concerns with a health visitor or GP, it might not be autism and as you say could just be a hearing impairment but if it is more than that waiting lists can be long and some professionals have a wait and see attitude so better to raise concerns asap for if they did need a referral than to hold off and end up needing one down the line.

@Mumma2Frankie07

My son had fluctuations on his hearing at pretty much every test. One ear would be fine, the other not or both not right. When we had the surgery the consultant said there was so much glue inside BOTH that there was no way it would have cleared without intervention. I guess it shows that there could still be a problem even if it at one point his hearing test is OK. I had the same concerns as you but from a much younger age - the unhappiness, no sound, no smiling etc. He didn't toe-walk or anything but he had the ear issues from less than 1 year old so he wouldn't have been walking then anyway so impossible to know if this would happened for us.
The first test is always hearing and I appreciate what they say about it being hard to test but the tymp test is the most important. The watch and wait time is long to go through but needed as could mean he doesn't have to undergo surgery. Secondly, get on an ENT list as soon as you can. Thirdly I can say that my son is doing well following surgery, you wouldn't know he was so affected as his speech has caught right up, his communication and playskills and willing to interact with others has changed so much.

Glue ear can be a red herring. Mine had it and we waited for ages for grommets. Were told all will be fine after getting them. Only, it didn't solve the issues. Got a diagnosis of ASD and learning difficulties later on. I guess at your stage, nobody can tell.

Is your child getting grommets or hearing aids? What is done about the hearing loss?

What issues did it not solve - as in speech and language did not improve ?

at 17 months, speech and language was really our main concern. Not too many other Asd like behaviours. They become more obvious later on.

How long after surgery did you notice a difference may I ask?
I have decided to go private with an ENT specialist in our area - normally would be seen within the week but have decided to wait 2 weeks for a specialist that my partner had when he needed his tonsils taking out as a child as he’s highly recommended and has a focus specifically in glue ear problems. Surgery is £1600 if he needs it which is a lot less than what I thought it would be… definitely worth it if it helps him x

We didn't notice a difference (hence the first big clue that it was more than just 'glue ear')

My son had grommets after found to have glue ear and enlarged adenoids. In his case we noticed a difference after 4-6 weeks and he went from 1-2 words to over 30. He started pointing and mimicking words and generally more engaged with better name response and receptive language.

Did your LO play with their ears a lot? My son is constantly playing with his left ear all day and is really bothered by it..and his right ear but not so much, he’s constantly doing a yoga downward dog pose also which I’ve been told can help relieve pressure with ear problems…
He lies down pushing his ear on pillows also which makes me think it’s definitely ear related… he’s still babbling away a lot and very affectionate with us. When I take him to soft play he goes up to the other children and parents it’s just his developments he seems to have stopped - looking when we call him, won’t respond to anything we say really and still doesn’t say anything other than Mama. It’s like he can’t hear most things it’s really strange? He currently has an ear infection in both ears again which isn’t great and he’s really struggling. Really hope the ENT specialist can sort it 🤞🏻

Ah this is amazing! I’m assuming autism has now been ruled out? How was your son after surgery? And how long did/does he need the grommets for? I’m really hoping this will help my son as I hate seeing him regress like this and not interacting like he used to. He has only started regressing since he started playing with his ears constantly and after multiple colds and ear infections.. really hoping it’s his ears and we can get it sorted ASAP!

I have a 16yo who had glue ear from a baby (and three lots of grommets) and was subsequently diagnosed with ASD too in his early teens.

What I'd say is the behaviours you've listed are normal for a 17 month old. Hand flapping, for example, can be a normal up to around age 5yo.
Ds had and still has good eye contact, babbled better than either of his sisters, and talked quite well (although not as well as his sisters).
He didn't line things up (other than cars in a queue), order things - he did like spinning wheels (working for Kwik Fit was apparently the height of desire for employment), but not in an obsessional way, but nothing that stood out.

With ds I was told repeatedly from various medical people that some of the symptoms that point towards ASD, also point towards glue ear. That meant that they weren't happy to assess ds while the glue ear was still an issue, unless there was more to it than what I could see.

Now as it turns out, ds does have ASD. However the behaviours he had at 5/6yo which made me wonder, were also glue ear markers. I also found that people used "he's a summer boy; he'll grow out of it" a lot, which makes me suspect that some of the attainment difference is simply that reason-summer boys get dismissed as "growing out of it" when they do need a bit of extra help.

What triggered me going to the GP and asking for an assessment, was nothing that I spotted at that age.
What I can look back and say is things that were just "his little quirks" were signs. Things like he disliked the feel of sand so much, even as a baby, he wouldn't go off the blanket on the beach. He wouldn't wear trousers (even at 16yo he rarely wears anything but shorts, even to school). He was both sensory avoiding and sensory seeking.

For ds, he was initially referred (by me) for ADHD. At the initial assessment, they pointed him towards ASD. Once he'd got that diagnosis, they wanted to relook at the ADHD one. Both of them they concluded the assessment by telling me that he was very close to the diagnosis line. He'd either be "NT with ASD/ADHD traits" or diagnosed with them. You may feel it is odd, but I had such a sense of relieve when they decided he did meet the diagnosis criteria. It wasn't for me, it was for him; it really helped him understand that he wasn't just the "naughty boy". It's done wonders for his self-esteem.