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ASD - glue ear, but feeling like I've no idea...

(5 Posts)
cjn27b Tue 28-Jun-11 14:06:10

DS is 2.8 and has been diagnosed with glue ear. He has significant speech and language delay, but is progressing really well with speech therapy. The ENT consultant has referred him for grommets and adnoid removal due to his SL delay and some behavioural issues. The ENT consultant has said these difficulties could be caused solely by glue ear or there maybe something else going on too.

Meanwhile, we saw a paediatrician for an assessment who said DS is showing some signs of autism:
- social communication, but delayed receptive and expressive language could be glue ear and he has good eye contact
- social interation, not playing much with his peers, but this could be due to poor communication
- play and imagination - plays with lots of toys, but during the assessment didn't show imaginative play (he does at home)
- unual sensory responses - no problems
- Abnormal body movements - no problems.

I'm feeling rather anxious again as ASD had been struck off the list of possibles in my head, but now it returns.

Has anyone else got experience of this kind of situation and able to share any information or experience. Watch and wait seems to be the answer, but it's making my head spin with uncertainty.

Maybe this is a lesson is teaching a relatively new parent patience, though it's proving to be a very hard one!

sickofsocalledexperts Tue 28-Jun-11 16:06:23

Does he point at things, to share an interest or direct you to something? Will he follow a point that you make at something? I know these are two things the GP did in the CHAT test for autism with me.

pinkorkid Tue 28-Jun-11 17:24:16

managed to delete my post but will try to say it again more succinctly.

Unfortunately there is quite a lot of overlap with symptoms of glue ear and asd also adhd, primarily inattentive or auditory processing disorder.

All of the symptoms you describe could be explained by glue ear alone but you can't unfortunately rule out other issues yet.

Happy to share our own experiences: ds now 13 and fairly recently diagnosed with Asperger's had glue ear as a toddler and first couple of years of primary school - he was on (long) waiting list for grommets but in the end as his hearing test results were improving we held off and he grew out of the problem by age 7. However, issued which audiologist said were attributable to glue ear remained and in fact problems increased.

When he started playgroup at around 3, staff flagged up that he often ignored them when they talked to him. He was found to have glue ear and mild hearing loss. We had some suspicions of asd because unlike your son he did have major sensory issues and got quite distressed in some social situations. However he did make eye contact with us - just ignored all strangers, did play "typically" with cars, drove them around, didn't just line them up, did point, so not all the classic symptoms were there at that stage. Some things have become much more marked with age. Looking back it was sometimes clear that some of his ignoring people was following his own agenda rather than just not hearing. He did get stressed by switching activities and changes to routine. Became totally engrossed with some things yet appear unable to concentrate with others.

Did the doctor you spoke to suggest what the autistic traits s/he suspected were?

cjn27b Tue 28-Jun-11 17:42:26

Thank you for your comments.

He does follow a point and point things out to you, but not that often. The paediatrician seemed most concerned about delays in understanding and speech, not much interaction with his peers, not showing imaginative play skills (though he does at home), and some odd facial habits a sort of forced giggle and teeth gritting / almost snarling as he approaches some people.

We do need to wait for the grommets. He's shown significant hearing loss in 3/4 hearing tests to date and a flat tympanogram.

kissingfrogs Tue 28-Jun-11 23:17:57

Hi. Flat tymp shows he's got glue ear.

I was exactly where you are now when dd2 was 3 (she's nearly 6 now). Dd2 was found to be severely deaf in one ear and moderately deaf in the other. Have you been told whether he has any sensorineural loss (permanent loss due to cochlea not working properly) in addition to glue ear? Dd2 was able to be tested for this with the bone conduction test as she could do the standard hearing test which involved throwing blocks in a bucket when she heard the beeps through the headphones - the bone conduction test is the same thing but with sound transmitted behind the ear to bypass the middle ear where the glue is. Dd2 had permanent hearing loss with additional glue ear.

Back to the point: dd2 had severe speech & lang delay. She also had significant behavioural issues which, in hindsight, were solely due to communication difficulties. Plus she reacted badly to changes in routine, sensory issues with food and (oddly) loud noises. I did suspect AS/HFA. Dd2 was given hearing aids (no grommits). Her language gradually improved and so did her behaviour - showing the two are definitely linked. By the age of 5 all the glue ear had gone and she is now only mild/moderately deaf. The behavioural issues have long gone as now you can explain things to her and she can understand. Food and loud noise still bothers her. She is doing well in mainstream school and is a good reader which helps her language skills.

Dd2 still has language difficulties though you wouldn't know it unless you tried to have a "proper" conversation or ask her to describe things (word finding problems making expressive language problematic unless on well-rehearsed topics). Like Pinkorkid says, there is a lot in common between HI/AS/APD etc. Bit of a chicken and egg thing. Communication difficulties have a knock on effect on social skills, behaviour, confidence etc - and how do we primarily communicate: Language.

I've written all that and then want to say Don't Worry! The uncertainty I used to have has disappeared as Dd2 has got older and I've learnt more. Get the hearing sorted out as best as you can then wait to see what the results are as your ds gets language input. Whatever the end result he has a supportive mother and that is the best help he could ever have.

(I wrote loads more but edited because it was far too long!)

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