? Autistic ? Glue ear

(25 Posts)
MrsDaniQ250987 Thu 19-Mar-15 07:56:57

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.

OP’s posts: |
2boysnamedR Thu 19-Mar-15 09:03:24

I have been in a similar position to you with my now seven. He had intermittent glue ear and was intermittently deaf. We had lots of hearing tests but grommets was never a option. I think they don't like doing that now.

No one ever listened to my concerns either but I refused to be discharged from slt or the paed.

At 5.5 I finally got a diagnosis of dyspraxia but I still found no one listened. My son now has a language disorder and is about 3.5 year delayed in speech

We always thought he had asd but it seems he isn't ( but I still suspect he is) as he can't get this diagnosis.

If he was given a asd diagnosis I think he might have had a better start in life at school to be honest.

I was told my son was fine for 5 years. He clearly isn't. He won't ever get over his speech delay now

fanjoforthemammaries7850 Thu 19-Mar-15 09:07:46

"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."

This doesnt rule out ASD, i'm afraid. My DD is like this and has fairly severe autism.

fanjoforthemammaries7850 Thu 19-Mar-15 09:12:35

Plus autism can defintely appear like hearing loss.

Sorry I know its hard to read this sad they should definitely support you better and explain things better. Glue ear wouldn't cause such a huge regression.

Icimoi Thu 19-Mar-15 10:13:53

I agree that glue ear seems unlikely to be the cause of all the problems you describe, OP, but there is certainly a link between it and speech and language difficulties and in turn other learning difficulties. Dr Lindsay Peer has done some research on it - see www.amazon.co.uk/Glue-Ear-essential-teachers-professionals/dp/1843123525

senvet Thu 19-Mar-15 10:23:36

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

Branleuse Thu 19-Mar-15 10:38:14

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

MrsDaniQ250987 Thu 19-Mar-15 11:21:03

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.

OP’s posts: |
MrsDaniQ250987 Thu 19-Mar-15 11:25:01

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.

OP’s posts: |
2boysnamedR Thu 19-Mar-15 12:44:36

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

chocnomorechoc Thu 19-Mar-15 12:45:05

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.

fanjoforthemammaries7850 Thu 19-Mar-15 12:50:50

My DD has non verbal ASD.

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

fanjoforthemammaries7850 Thu 19-Mar-15 12:51:41

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

AvonCallingBarksdale Thu 19-Mar-15 12:58:47

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.

Frusso Thu 19-Mar-15 13:30:39

Message withdrawn at poster's request.

Elisabennet Thu 19-Mar-15 14:04:29

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.

adrianna22 Thu 19-Mar-15 14:20:10

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.

Handywoman Thu 19-Mar-15 19:18:41

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.

MrsDaniQ250987 Fri 20-Mar-15 06:01:54

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.

OP’s posts: |
Firsttheyignoreyou Sat 21-Mar-15 07:33:31

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.

Iwhar Mon 11-Jan-21 13:17:34

@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!

Haggertyjane Tue 12-Jan-21 21:04:01

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 Wed 13-Jan-21 02:36:31

@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 Wed 13-Jan-21 08:20:45

@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 Sat 16-Jan-21 15:11:30

@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.

Join the discussion

To comment on this thread you need to create a Mumsnet account.

Join Mumsnet

Already have a Mumsnet account? Log in