Hearing issue or sign of Autism?

[Susiejo77]

Honestly, I'm at a loss to what is going on with my son. My son is now 22 months old and currently is non responsive to his name but also when I clap behind his head, he doesn't respond to it and turn?

Bit of history, I remember taking him to the doctors when he was only 6 months old, as i thought he couldn't hear me, they checked the ears said they were fine and I put it to the back of my mind. Then my son started nursery and at 12month old that when I started to notice he wouldn't respond to me calling his name at pick up in the busy nursery room, if he saw me he'd come running, but if he had his back to me, or was side on then he wouldn't hear me/respond. We finally got him grommets at 17 months old, I was hoping for a switch on moment but alas this didn't happen, I remember him struggling to locate sound after the operation (he'd look both ways unsure where the sound was coming from) that soon settled down and we did see improvements in his concentration, wanting to take part in circle time and sitting still for longer - before he just wasn't interested, he did his own thing and wondered off, he started to join in on the nursery ryhme signs, clapping etc... although still not on demand and has started to point to things in books for me to say what they are, improvements were slow but we did see progress, like making more sounds babbling, I heard ffff's, shhhhh, sounds i'd not heard before and trying to say a few words - although they aren't entirely clear and mumbled 'na na' for banana and finally he didn't start responding to his name consistently until he was 20months old, I was so relieved I thought it must have been his hearing after all. Then, he got a severe cold and the was up until 4am in the morning struggling with it and from that very next day onwards he's not responded to his name again and now I've just tried clapping behind his head and he doesn't seem to turn or react at all to the clap. I'm so confused as to what is going on with him he seems to hear the tv?

[AjasLipstick]

Go back to the GP. Hearing issues can be complex and he might need to see a specialist. x

[Susiejo77]

Thanks AjasLipstick, I forgot to mention I have taken him to the GP and he looked in his ears and said the grommets looked clear, he said wait until the cold had cleared and see if it made a difference. I wasn’t happy with that so I saw another doctor and they are referring DS on to the NHS ENT. I’m just panicking over the waiting time and I’m just so puzzled as to whether he can hear or not. Would a toddler with ASD respond to claps behind there head? I know they don’t feel the need to respond to their name always, which makes me wonder and worrying more about what is going on.

[mummabubs]

Hi OP, sorry you're going through this. Can I ask when you say he still seems to hear the TV do you mean he turns to look at it when there's a sound (and can't see you or anyone else suddenly look at the tv so wouldn't be copying you?)

My sister was 2 when doctors started to query whether she was on the autistic spectrum as she wasn't responding to her name or sounds and it transpired she's profoundly deaf (Although my mum believes she was born hearing as she did respond to sound when she was younger). She's now a very successful and happy adult despite her difficulties. Personally I'd continue to push forward with the hearing investigations unless there are other things that are leading you to question ASD. Xx

[AjasLipstick]

Have you done the MCHAT test?

m-chat.org/

[AjasLipstick]

You don't need to register. Scroll down and you can do it.

[AjasLipstick]

www.autismspeaks.org/screen-your-child

THis might be a better link.

[Want2bSupermum]

Your GP is an idiot if they checked the grommets and said all is ok. As a parent of a child who had hearing issues, you need to insist your child is seen by an ENT and a paediatrician. The lack of hearing is a major issue that needs to be investigated.

DS has autism and had hearing problems as his ears would block for no apparent reason. Last year they cleared up on their own. He also produces a lot of ear wax. The ent has told me he needs to have his ears cleaned at least twice a week. If I don't clean them the wax builds up so quickly and he can't hear well.

[Firstbornunicorn]

When my brother was a baby, my granny discovered he was deaf when she was looking after him and my cousin. A door slammed shut, and my cousin (only 1 week younger) gave an exaggerated startle response, and my brother didn't move.

She walked over to the door and slammed it again, with the same results.

I don't know if clapping would be loud enough for a child to absolutely need to respond to it, but you could try the door, slamming thing or something equally loud to see if it makes a difference.

[AjasLipstick]

How does he respond to music? Like...will he dance or jiggle to it?

[Susiejo77]

Mummabus, I have always thought he could hear the tv, he also just recently ignores his name, but I’m sure if I say his name and then snack he will look up and come over? Is that selective hearing? Or do autistic children also just ignore their name and a word like snack would get their attention.

AjasLipstick thanks for the link, I did the test and he scored 3/4 - was a bit stuck on ‘have you ever thought your child was deaf’ as he has had the previous glue ear/grommets hearing issues. Not sure how to answer that one, I’m wondering if that is a bad score, starting to feel sooo anxious about this.

Thisinsntmeok, I think my Ds’s attempts at words is like your sons. Is that a trait of ASD then? He will for example try and say “duck” but we just hear the “uck” part, or “nei” for “neigh”. Can I ask you what age you knew your son had ASD? And when did he start talking?

Want2bSupermum, can I ask you what kind of Pedatrician I should ask him to be referred to? He is now being referred to ENT on the nhs, we had previously gone privately, but our insurance will no longer cover it now he’s had the grommets. I did ask previously, before I knew about the glue ear about seeing a paediatrician and was told it wasn’t possible at his age

[Susiejo77]

AjasLipstick he does a little bop to music, nothing exaggerated. I will have to try slamming some pots and pans on the floor tonight without him looking

[OhLookHeKickedTheBall]

If your ds had grommets only 5 months ago aren't you due back for a check up with Ent soon? They should do a hearing test then too as standard. I've found DDs Ent to be a lot more helpful than her gps for anything like this, even simple ear infections.

[OhLookHeKickedTheBall]

he also just recently ignores his name, but I’m sure if I say his name and then snack he will look up and come over?

It could also be that he's having issues processing sounds rather than hearing them iyswim.

DD is being watched for this at the moment as she often gets half a sentence and fills in the gaps, often incorrectly. The consultant realised when he told her she was off for a hearing test and she chewed his ear off for a few minutes about her last maths test at school 😂. There's been other issues too.

[Want2bSupermum]

Here in the US our DC see a developmental paediatrician. They are doctors who have extensive experience and training to work with behavioral diseases such as ADD, ADHD, ASD, Oppositional defiance, OCD and anxiety to name but a few. You can start with the ENT and then ask the ent where your child should go. Each NHS area has a slightly different process. Try to avoid CAMHS because the funding is terrible.

Our ENT referred us to a very good group of doctors who manage high functioning autism. Most ENts work with the paediatricians because the first step is to rule out a hearing problem.

[Fishforclues]

With a history of glue ear and early grommets, and especially in October when 90% of toddlers are walking bug factories, there is surely much more chance he's going through a glue ear phase than he's autistic. The history of glue ear, pointing, saying 'clipped' words and the fact you can pinpoint it so specifically to a night he had a dreadful cold would all support it being a glue ear thing. Which is not to say you can't have both, but Occam's Razor says conductive hearing issue until proved otherwise IMO. My autistic son was thought to have limited hearing when he was 2, but he never pointed and it was all a bit weird because we'd never noticed him having any bugs. (He does not show illness like other children do.)

Some level of ignoring their name is normal even in NT children with good hearing, as they learn they are separate to you. I think it's pretty standard to develop slightly selective hearing and find words like 'chocolate' and 'icecream' more interesting than anything else. You're right to be cautious but I think you're on the right path with ENT. It's only when that is basically ruled out as an issue, or if you see other flags for autism, that you need to worry any further. In the meantime, speaking clearly and directly to him will help him either way.

The autism pathway varies in the UK according to the area and the age of the child, and however it works in OP's area is likely to be different to how it's done in the USA. I can't imagine anyone would refer a 20 month old to CAMHS so it's irrelevant to OP but for much older children, in some areas ALL the NHS ASC diagnosis is through CAMHS. Avoiding CAMHS would be extremely bad advice to those children's parents. (Plus, despite underfunding our CAMHS clinicians were fabulous.)

OP if you have a SaLT drop in service via the HVs it might be worth popping along for some advice, while you're waiting for ENT.

[Want2bSupermum]

The issue with CAMHS is that they are very underfunded. When we were looking to move back in one area where ASD is managed under CAMHS the wait to see a specialist for a check up was approx. 9 months. In the other areas where it was managed by paediatricians the wait was 2-3 months. When your child is in freefall 9 months is a very long wait to get an appointment which opens the doors to other services.

In the US, development delays are considered mental health issues until there is a formal diagnosis. ASD is a medical disease for insurance purposes. In terms of how our local providers are set up, autism falls under behavioral when it's high functioning, which is what my DC have, and low functioning falls under physical. For under 5s all behavioral issues fall under developmental and over 5 they specialize fast. I found a team of doctors at NYU who specializes in high functioning autism for elementary and middle school education (K-8). They are the team that have developed the Nest program for NYC schools which I'm trying to get implemented in my town as a way to accommodate G&T plus high functioning kids like mine.

Overall, you get what you pay for. The NhS is extremely underfunded. In terms of access to care, you really the underfunding when you have a child with autism and can't get them seen quickly and have minimal choice of therapist. Our son has profound sensory issues, he sees an OT and ST three times a week outside of school. In school he has two sessions a week with ST being social communication groups with NT kids. For his anxiety he sees a play therapist and has music/art therapy once a week. Yes it's a full schedule but his progress astounds everyone. It costs us a fortune and our goal with our charitable giving and political involvement is to get this level of care for every child who needs it.

In the meantime get him in to that ENT ASAP. If you can afford it get him into a nursery where they can also refer you for help and most DC respond more to non family members. Don't stop talking to him, describing things around you. With food make sure you have a variety of textures. Give him fruit gummies to chew on as this helps develop the mouth muscles, which help keep ears cleared.

[Susiejo77]

Many thanks for these responses, I did the clapping behind the head test, demonstrating it to my husband who’d been away in business, he agreed - very odd. I then when he wasn’t looking dropped a oven tray on the kitchen floor, no response, then dropped a small sauce pan - the cat jumped out of her skin but DS took a few seconds to turn and he didn’t seem alarmed by the sound. I then did a large heavy pan, was a bit worried to damage my floor tiles, and he looked around straight away, with a look of what are you doing crazy woman. With regards to getting him to see a pedatrician no one will refer him at this age, I’m wondering what age I can get him referred. Really appreciating the responses, I’m wondering if it’s likely for a toddler with ASD to start responding to his name and then just stop, does seem very strange?

[Susiejo77]

I’m going to speak to my husband tonight and I think we will take him privately again as I have no idea what the wait is.

[Phillipa12]

You need to ask for a referal to audiology asap, if that comes back clear then explore possible other difficulties. My eldest ds has a moderate hearing loss diagnosed with the newborn hearing screening, he is fully aided but it was around 3 years old when we fully understood and realised what he struggled to hear. Ds is now 10 and thriving in all areas but he still has issues even with the equipment he has but at least now he speaks up and lets people know what he has and hasnt heard.

[Susiejo77]

Fish for clues, he only points at pictures in books, and to make a choice between snacks, he doesn’t really point afar at anything really, he kinda points to bubbles to pop them and pointed at a slide he wanted to go down once. Can I ask is it good that he points to think near by? This is a mind field to me. I’ve left a voicemail for the health visitor. I know his 2year check will be coming up and he will fail that - his understanding of direction isn’t good, but I had put that down to his lack of hearing and he needs to learn to listen.

[Fishforclues]

I agree with Phillipa, audiology.

Lack of pointing, and particularly difficulty following someone else's pointing, can be flags for autism at particular ages. I don't know enough about this to say what ages these milestones need to be met by to count as typical development, but if he can do them, that's good. The age is critical - what's typical in a one year old can become a flag for autism at age 2-3, so I do think it's easy for parents of one year olds to google checklists and worry their child may be autistic. Often they're actually just little or perhaps a bit delayed for other reasons such as hearing loss.

First and foremost he needs a hearing test. Even if there were more flags for autism and no history of glue ear, they'd want to rule that out first.

[Susiejo77]

I have booked him a hearing test for this Wednesday. Funnily enough, when I pick him up from nursery and I was chatting to his keyworker he kept putting his hands on my face to turn it towards him, he hasn’t done this since last winter when he had glue ear. We will see.