? Autistic ? Glue ear

[MrsDaniQ250987]

My son is nearly 2.5 years old, he currently has no verbal communication, refuses to sign, has poor attention and eye contact, finger flicks and spins in circles, he occasionally flaps his arms and shakes his head.

He developed normally until 11 months and then regressed, he showed better communication efforts at 6 months than he does now, he no longer claps or points to things either, but will take you to things if he wants to show you something. He doesn't startle at loud noises, and he is fine with lots of noise and people around. He is mild mannered and really laid back and he is more likely to cry when he is frustrated than lash out.

He has been under community paediatrics since he was 14 months old as he used to walk with significant bowed legs, which have now resolved. But I had to fight to keep them seeing him over this. He see's audiology and speech and language at my own referral (as everyone wrote me off as neurotic), SALT have only become concerned in the last 6 months, and nothing they suggest is beyond what we have been doing since he was 4 months old. His health visitor is useless at his 2 year check asked me to sign a form to say 'what action WE are taking for his delays' I questioned this as she is almost impossible to contact and neither her nor the paediatrician have made any referrals! She just said it's just a standard form that just says action is being taken!

He always has a cold, but the GP responds that he is a child and that it is normal. In the last 2 sessions the Audiologist has admitted that his ear drums are 'dull' and he has got fluid in ears, they remain adamant that his hearing is ok, but over the last 3 or 4 sessions I struggle to see the responses that they say are their, the last session I saw no response at all! Moreover he is so clumsy and unbalanced, even for a 2 year old. But she remains adamant that his ignorance us due to autism not hearing loss and they wouldn't do anything about his glue ear.

I struggle as I don't feel we have the relationship we should have, he is my world and I love him, but I wish I understood him better, I haven't heard his voice in so long I cannot remember what it sounds like. I am not deluded, I have accepted he is most likely autistic and the life I wanted for him is going to be very different. But I still can't shake the thought that there may be other issues being ignored because, despite not being formally diagnosed, they all clearly feel this is down to autism.

Has anyone else had similar experiences? my son is surrounded by the 'normal' children of friends and family, nobody understands and I feel so alone and isolated with him. He is due to start nursery soon and I fear that gap between him and other children is about to get worse, schools and families are set to get involved and help him, but I fear because he will behave and is so easy with new environments that even they will feel they don't need to help him.

[Concernednearsurbiton]

Hi my son was EXPECTED to have a SEND Statement as WE had Dyslexia both sides it took time to get gkue ear recognised and it's highly prevalent in boys.

Nobody can have an opinion until IFvthere us glue ear and please note it CAN Fluctuate for us not much help as the Gromet IMPLANTS were rejected WE had Constant ear infections and pain and CS went after me Blaming me for what was Gromet Ear Plant Rejection Absences thankfully my own mother was a nurse NY father a psychologist amazing what we absorb in GROOMING Up in such a household.
MEN are fragile egoed please be aware Humanity moves to what feels good and away from what Male them feel bad MEN wont tell you they dont cope so well start ghosting excuses not yo he home when they should so WATCH that... your tackling INTERNAL personal to the child issues. Lashing out and PUNISHMENT by men who wont tell you what is wrong with themselves aka distressed unhappy by child issues before many know it they are gone moved on.. Then NEXT issue SEND LAW Patient Contacts arent under SEND LAWCase management yet .
My son got taken into care i was SCAPEGOATED for uncausable integral nondisclosed paternal issues as was our child PATIENT.
Family is set up to manage PARENT Conflict.
SEND PATIENT CONTACTS dont need Fictional parent conflicts they need to comprehend the STRAIN of problems the STRAIN of labelling or ABUSIVELY mislanelling children as autistic the FIRST check is always HEARING and Gromets dont always work or fully work because as implants theh cancer rejected infections will cause PAIN distraction and further hearing loss again . Worse when do these kids catch up on education .
There are Specislist soeach and language units in schools managed by Educational Psychology who will in the unit move the child PATIENT pupil through multiagency processes .
It is imperative that both sides of family discloses ASAP what is already known to formally exist in families across siblings first cousins parents siblings it helps provide an aetiology a theory of what is LIKELY to get to Formal diagnosis quicker.
As stated you need Educational Psychology as they will move through multisgency to find answers as quickly as they can for you DO STRESS Glue ear invites hereditary or you have noticed it as many issues the Description is Glue Ear Compounding .
I would add that just as you go to the GP with symptoms .... there are for many illnesses TRAITS eg temperature hot cold fatigue can be signs of cold or flu or bronchitis etc Please dont be tempted to MISLABEL it can cause a lot of damage and rejection as many people have PREJUDICES and wont engage as well as they should even as family .

Anyone STIGMATISING Fictitious glue ear when they know a child PATIENT cannot hear...
So someone sees TRAITS this is a very complex arena of Formal Diagnosis with the glue ear compounding the Specialistvujit route normally got into at nursery is very thorough and helpful.

But dont let anyone mislabel DESCRIBE presentation BUT dont label. As is what you as parents know of in family these things are like Dirty secrets people wont tell you unless they NEED to what's hidden in family . They family need to help as theories of what is likely as already in family does help speed the process.
Whatever you do dont let Labelling undermine your relationship its imperative to comprehend EVERY child Patient is worthy of investment the CLOUDs glue ear presentation can complicate by Compiunding 40% of hearing issue patients have other issues .
Boys in particular they had less coping strategies.

Please become relationship aware to MALE unspoken sensitivity...
Learning Disabilities are

Not Environmental
Or parental

Your looking at integral issues that once fully understood snd managed properly sn Educational Psychologist for your area will get the process of seperating glue ear from whatever it is masking or compounding...
Everything once everything is Gormally Diagnosed Prescribed cae misplace at home and in school
Your child will start BLOSSOMING help your hubby understand they get frightened and cant discuss things and start not being there as much as one would hope.

IF your finding the dad struggling talk again to Educational psychology get the issues in relating to the PATIENT on the record the Educational Psychology can endeavour to get you pre emotional support for the stressors your under.
But dont leap forward because of TRAITS when glue ear Masks focus on finding your Educational Psychology they work for Gov Education Contact your Borough or you can engage one privately .
However be reassured once everything is Fully understood your situation will be if you have glue ear already

Glue ear COMPOUNDING the learning Disability complex case .

Also even if children get gromets whethervtteybwork or not how much help they manage to deliver varies

But kids STOP Liatrning they have to be encouraged to use the gromets to.Listen if in their own world a ling time it can take a couple of years to get thr kids to remember to Listen.
Glue ear clears eith growth of war channels better drainage of the drum age 7.5 but you need ASAP the second pathology you suspect exists there to be found if there are reasons yo investigate they can get fully involved in analysis within Educational Psychology by Kindergarten ask your GP and LA for referral to Educational psychology or your ENT specialists can ask for a 2nd pathology investigation for you too.
Whatever time is important engaging with the multiagency pathway by flagging a second pathology aka another answer is sought and with 40% ENT Audiologh patients commonly having a second issue getting ENT and Audiology to ask the GP and Gov Education to investigate may be the softest oath if people your engaging with are resisting .
Whatever it is remember once its Fully understood your lives the lives of your child PATIENT will get easier.
Warmest regards .

[ISaidDontLickTheBin]

We had the opposite in that professionals were all quite happy to jump on a diagnosis of glue ear rather than properly assess other traits/behaviours we were seeing. DC was too young for grommets on the nhs but had temporary hearing aids until the glue ear cleared. They actually worked really well. But it wasn't until several months after the glue ear cleared (and S&L progress was still achingly slow) before anyone was really prepared to consider ASD referral.

OP can you get a referral for a sight test for your DC? Mine needed glasses and it has actually made a huge difference to social communication. There's other things going on as well, but the glasses were life changing.

[SpeechieE]

And also tongue tie, in very extreme examples this can affect speech development, but this is so rare, almost non-existent, and so I'm afraid this operation is not likely to make any difference to your son's speech. Even with tongue tie, the distance your tongue needs to move is very small in order to develop typical speech. So even a child with tongue tie will be able to articulate most speech sounds, or will at least try. Obviously he's getting an operation so that means he must be on the more extreme end of the scale, but again tongue tie is much more likely to be operated on due to potential discomfort/difficulty eating as opposed to for speech difficulties. X

[SpeechieE]

How is his understanding? Will he follow requests or commands? Research is a bit hit and miss as to whether glue ear affects language development, but anecdotally lots of parents report glue ear certainly affecting speech and language development, and as a trainee Speech Therapist, it is something we're always told to look out for! Having said this though, it will depend on how badly he is affected and for how long... Of course it's tricky to know if he can't tolerate the hearing test.. Have the audiologists said they won't complete the hearing test? They should be able to do it over a few sessions if your son is struggling to maintain attention.

Having said all this though...generally, glue ear won't affect his understanding of the world, and glue ear sensory issues are more related to discomfort (glue ear can be very very painful!). So yes, how is his general understanding? It sounds like he's great at getting you to understand what he needs, but how well does he understand you? if you think of things that he could pick up from his surroundings, without words, does he seem to understand these things? Does he understand contextual cues, for example, if you put your coat and shoes on, does he know that means you're going outside?

[emma29brown]

Glue ear or autism?
Wondering if anyone has been in the same position or has any advice or knowledge. My son is 4, he was diagnosed with autism last year. He currently is non verbal ( he says sounds and a few words ) his non verbal communication is really good for example he will take me to what he wants or physically show me things he needs etc, he’s good with technology he knows how to use all the phones and iPad, he can play all the shape games etc. He’s gives eye contact sometimes and he’s affectionate he will lay on me let me cuddle him etc I wouldn’t say he has major sensory issues or anything, he’s scared of the hoover and hair clippers.

My problem is I just found out he has glue ear, they can’t tell me if he has mild or moderate hearing loss because he won’t do the hearing test. They didn’t want to do grommets but because he’s getting a operation done next year on his mouth ( he has tongue tie ) as he’s being put asleep they have agreed to put the grommets in then.

I have done lots of research into tongue tie/ glue ear and apparently they can mimic the signs of autism, give sensory issues and curses speech delay. I am not saying he doesn’t have autism but the doctors just seem to blame everything on AUTISM they are very dismissive of a hearing problem or tongue tie contribute to speech delay.
Anyone help?

[Iwhar]

@Haggertyjane that is great to hear that your DS is developping the normal pathway.Hope his speech will get better as he grows up. We are now waiting 3 months for the glue ear to improve itself then DS will have another test. Your story gave me hope as ,looking back at my DS development, I do feel that his speech& understanding may too be affected by his hearing problems( we don't know since when he has the glue ear). He also has a sleep apnea which I was told should resolve itself as he grows but now I wouldn't be surprised if he has overgrown adenoids as your DS too. I do feel very stressed and worried about my DS but hope we will have some answers in a few months, just the fact that I am unable to help him at the moment makes me feel so down. Many thanks for sharing your DS ' story, it really helps.

[Haggertyjane]

@Iwhar. DS developed along a normal pathway, and doesn’t have ASD. However even at 6 his speech is quite delayed. He still has some hearing issues we think but we haven’t been able to get another hearing test for a year because of Covid. It’s clear he isn’t hearing clearly though as he often says words wrong because that’s how he hears them.

[Iwhar]

@Haggertyjane thank you for an update. How is your DS development since the surgery if I may ask? Hope things are going well for you.

[Haggertyjane]

They were going to skip treating DSs glue ear, but the surgeon said she had never seen such thick blockage, and his adenoids were huge on removal, so it all needed doing for sure.

[Iwhar]

@MrsDaniQ250987 Hello, I am wondering how is your DS doing these few years on? I have a son who is showing similar behaviour& was diagnosed with glue earnin both ears. I am sick worried.
Many thanks!

[Firsttheyignoreyou]

Co-occurring difficulties is the norm - is it possible your DS has dyspraxia as well as ASD? Mine does. He also lost language but has had SALT for five years and is now verbal, at times, he is verbose.

Quick tangent - 2boys - DS1 had that gap, had two years of SALT and was signed off. But his disorder was expressive only. DS2's gap was much larger - dx with SLI both expressive and receptive which are responding to SALT.

MrsDani, have you looked at therapy? ABA? SALT? OT (sensory issues are common with ASD)? What do you think would make a difference? Nursery didn't in our case because it wasn't specialist enough. However, they flagged up major concerns.

[MrsDaniQ250987]

He already attends audiology regularly. He has been seeing the every 2-3 months for a year with no improvement and worsening responses.

I don't think it is one problem over the other, but I do think his compromised hearing affects his communication.

[Handywoman]

Another one with a dd with ASD and glue ear.

Conductive hearing loss is more prominent in the ASD population, so treating them as mutually exclusive is a bit naive.

Besides which he can have close monitoring from audiology/ENT and SALT.

If he has general communication issues it's is of more importance that the hearing is optimised - dd2 wore a hearing aid aged 4-5 very successfully.

[adrianna22]

Fanjo... I've known a couple of parents whose kids had loads of words and they were socially on track. But suddenly regressed. I wonder why that happens?

DS just kinda froze in his development. Well academically and his independent skills were developing at an alarming rate. But his social and language development just seemed to have remained stuck and they were moments when I felt like he regressed, but it wasn't actually the case.

OP, it's very hard to say. But I do agree with others that just the glue ear wouldn't cause all your DS problems.

I've seen many deaf children vs a deaf child who also has autism. There's a difference. The children who were just deaf were not as responsive but they were more socially engaged.

[Elisabennet]

Yes, we had both problem, and even after glue ear cleared, language and social interaction didn't improve. One way to maybe shake things up in NHS perhaps would be to consult privately and see what they say, National autistic society can give you a list of private experts. Ultimately, it is always better to know what you are dealing with, even if it is hard. All the best.

[AvonCallingBarksdale]

OP, my DS had glue ear when he was much younger, about 3.5. He had grommets put in a number of times. The medics said it was one of the worst cases they'd seen! However, whenever the grommets were put in he was immediately back to his usual self. I guess what I'm saying is that we never experienced any regression at all due to his glue ear. Good luck hope you get some answers soon.

[fanjoforthemammaries7850]

My friend's son also regressed. Regression is common in ASD.

[fanjoforthemammaries7850]

My DD has non verbal ASD.

She had hundreds of words and fairly normal social development until age 2.10 when she regressed overnight.

[chocnomorechoc]

My Dd had glue ear and all her issues were blamed on her glue ear. We got grommets (and it sorted the constant ear infections - yeah) but the other issues persisted. We now have a dx of autism.

glue ear can mimic Asd but you can have autism and glue ear. Our geneticis said that they often see glue ear in children with chromosome issues (dd was eventually dx with a chromosome deletion which caused her autusm).

My bottom line is: if your DC has glue ear and asd, then everybody will try to blame everything for ages on the glue ear. DD is severely autistic but still GP, HV, Paed, Sakt suggested for ages the glue ear was to blame. Only after our 2nd set of grommets did not improve things we wete taken seriously.

[2boysnamedR]

Hmm I guess I have had both issues together but after the glue ear went the language didn't improve at all. I know other kids who was delayed with glue ear who immediately improved after grommets. In both cases they was noticably improved within weeks.

I went for clearing ears with oil which worked but at the end of the day for us clearing it didn't make the difference.

I have a dyspraxic and a asd child. Neither regressed. They both just froze in development

[MrsDaniQ250987]

Senvet. My son will interact with others. His eye contact isn't always great. But otherwise he is able to play games which he enjoys.

[MrsDaniQ250987]

I am not implying he could possibly have glue ear rather than autism. But I just feel that label seems to be their answer to every question and I want to be sure.

The regression started around the time his hearing tests started to show fluid and he became less responsive. I am getting a referral to ENT as I want everything to be ruled out.

I just wondered if anyone had experienced both issues together and what the end result was.

[Branleuse]

All of the things you say, suggest ASD much more than glue ear to me x

[senvet]

Everyone out there is the regression something that fits with ASD/ASC?

I had an idea that communication is delayed, but not that it goes backwards. My ASD relatives kept going forwards although they are varieties of Aspergers.

The less verbal ASD kids I have heard about since generally seem to either to stay at one level, or inch forwards. Regression is a new one on me. Dani I don't want to alarm you - I am not a medic or salt or anything, just a person who ended up helping families with sn kids, especially ASD/C since I helped by relatives.

I heard a SALT the other day describe how she started work with a non verbal child by making herself interesting to them. If they made a noise, she copied it. If they made a toy make a noise by shaking it, she would shake the toy. If they smile at her, she makes herself interesting back to make sure that her response is recognised - it might be a noise as well as a smile. Is your dc past this stage?

Sorry not to have more that helps