Glue ear or Autism! Why are the experts giving conflicting answers?

(19 Posts)
AndiPlusOne Tue 27-Jan-04 13:02:16

Hi, Need to find somebody out there who has had a similar experience.

My 3yr old son displayed alarming behaviour just after his 2nd birthday - holding his ear, whining, arm flapping - other than that, he just 'switched off' from us and didn't want touching. HV was told that he had never had a hearing test but still referred down the line of investigating possible autism. Since been confirmed by GP, ENT clinic & community paediatrician as NOT autism but GLUE EAR! GP is managing while we wait for grommits. Behaviour is almost back to normal and he is trying to speak....BUT speach therapist is still not convinced and wants to continue down other routes.
I have tried to insist that she does not take us down that road again but she now has me down as an 'obstructive' mother. What can we do? Has anybody else had similar experience?

OP’s posts: |
coppertop Tue 27-Jan-04 13:15:12

It was actually a speech therapist who was the first professional to suspect that our ds1 (now 3.6yrs) was autistic. She was concerned by the fact that ds1 didn't bother to try to communicate at all, eg no pointing at the things he wanted, not understanding if others pointed etc. In our case the speech therapist was right.

However, usually with autism it's the parents who are convinced that their child is probably autistic and having to battle to get anyone to listen. If you don't have any particular concerns and the Paed agrees with you then it is unlikely that your ds is autistic IMO. What does the speech therapist want to do next? Have they said what isit is exactly that they are concerned about?

Luckymum Tue 27-Jan-04 13:24:16

Hi. My ds2 now 12 used to

Head bang from about 9 months
Have major tantrums 3 or 4 times a day lasting up to an hour
Have night terrors
Be obsessive about toys, routine etc.
Unclear speech
At 3 his nursery said he 'lacked social skills' ??

Ds1 had major glue ear problems, so after ds2 failed one of his hearing tests we took him to ENT too. He had had the odd ear infection but nothing that would have otherwise concerned me in that respect. He had tonsils and adenoids removed & grommits put in after glue ear was diagnosed. To be honest we've never looked back, within 6 months he was a different child.

You know your child best, maybe keep your options open but don't worry too much especially as he seems to be improving. Glue ear does improve as they grow and the tubes get bigger. The mums here with an autism diagnosis for their children may be able to put your mind at rest.

dinosaur Tue 27-Jan-04 13:38:08

I agree with Coppertop - you need to get more information about the other routes suggested by the speech therapist, and what exactly it is that she is concerned about.

I have a 4.5 year old autistic son and at one stage we were assured by a speech therapist that she was sure he wasn't autistic, so my experience is a bit different.

I'm sorry I can't be more specific, but it is difficult without knowing more about the reasons for the speech therapist's ongoing concern.

Jimjams Tue 27-Jan-04 14:50:54

well we were told that ds1 "definitely wasn't autistic" and he was/is/always will be. I would ask the SALT what behaviour is causing concern. The behaviours you mention wouldn't worry me particularly, things like no pointing, not showing stuff of interest to you, not being able to follow a point would. My friend's ds1 had bad glue ear, it affected his speech but he didn't ever really look autistic.

Not all SALTS are that well trained in autism though. (Some are/some aren't)

Davros Tue 27-Jan-04 21:27:54

I also think that you should not reject the SLT's views out of hand. Find out more. Of course you're worried and probably scared and the chances are everything will be fine.

I have known many, many autistic children originally diagnosed with glue ear and its something I'm rather skeptical about as I think it delays getting appropriate assessments. One reason too is that children with ASD who regress often seem to have a history of ear infections, lots of antibiotics, possibly compromised immune system.

musica Tue 27-Jan-04 21:28:47

Can't do any harm to investigate I should thing. Good luck - I hope everything works out.


robinw Wed 28-Jan-04 09:42:54

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AndiPlusOne Wed 28-Jan-04 19:32:38

Thanks all....

I was in total agreement with the autism theory until first visit to A&E then GP who sorted out a serious ear infection which they thought he'd had for some time. Behaviour then resolved and he began trying to speak.

SALT is concerned that he begins talking (though not much)and then after a few weeks he lapses back into silence. Have tried to point out to her that this timing is very clearly linked to each time he has had an ear infection - proven by visits to A&E due to temperatures over 103 degrees. GP has seen him very regularly to monitor & agrees on difference in behaviour fitting in with this argument. GP very adament that we should not listen to SALT opinion at least until ears have been resolved...Says tests they try are like asking a 3-legged dog to run an asault course!

OP’s posts: |
AndiPlusOne Wed 28-Jan-04 19:36:24

PS... Since initial infection sorted: No repetitive behaviour, lots of imagination & eye contact, good sense of humour and facial expression - This is what convinced me that Autism is not correct. However, he is not confident in front of SALT and tries to avoid her! What can I say - he refuses to perform for her.

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robinw Thu 29-Jan-04 07:03:50

message withdrawn

Jimjams Thu 29-Jan-04 09:00:05

AndiPlusONe- how's his pointing, gestures and general ability to communicate without speech? This is a much better indicator of a communication disorder than speech. Also how's his understanding? I know 2 children who have had glue ear severely enough to affect their speech, but both have had good unbderstanding of language and very good use of gestures, pointing etc.

Mu autistic son doesn't really have much repetitive behaviour (although he can be a bit "patterned" as we call it), has a good sense of humour- and very infectious giggle, lots of facial expressions, and in a relaxed environment very good eye contact. IN fact he's just been for a follow up assessment at BIBIC and they commented again on how good his eye contact is (and his eye contact was the reaosn I was told he "definitely wasn't autistic".

We will be getting the results of his CARS assessment soon (childhood autism rating or something like that) and I'm fairly sure he'll come out as "moderately" autistic- I know he won;t come out as mild anyway.

SO what I mean is in your position I would stay in the system for a while. GP's are not very good with autism ime, some SALTS aren't, but some are. The toher reaosn is purely practical, if you;re in the system you're ready to get things assessed eventually. Because there's a long wait by the time the assessments come up you're either going to need it, or everything will be fine and you can just cancel the appointment. If you wait unitl you are really worried to request an assessment then you will be waiting months before it happens.

Anyone who has a good understanding of autism will be able to tell easily whether the problems are caused by a communication disorder or a hearing problem.

AndiPlusOne Thu 29-Jan-04 13:53:40

Thanks Robin - Thanks. Will look for the toothpaste this week.

JimJams - SALT has mentioned "Complex Communication Disorder" but comprehension is very good as nursery were more than happy with him and his progress.

I was pretty convinced of an autism diagnosis being likely - they also tested for aspergers. BUT he is making progress all the time and now only issues really are his speach and inability to communicate with his peers. (He's pretty good with younger children who don't speak!)

Have just contacted Deaf Children Society who say they would strongly recommend that any child with Glue Ear or any other hearing difficulty should be referred only to a SALT who has experience of this type of need. Apparently, they use different methods and approaches to those who deal with any other speach difficulty. They also have an audiologist who will be calling me later to discuss how to approach things with the ENT clinic.

Will let you know how it goes....

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Jimjams Thu 29-Jan-04 14:01:50

If he's pointing, gesturing and comminicating easily in ways other than speech then a communication disorder is very unlikely. DS2's (2) speech is very dodgy but he doesn't have a communication disorder. What type of SALT are you seeing? If its the community SALT she may not be very experienced in anything out of the ordinary - and may just want to refer on to cover her own back iyswim. Actually I'm not sure exactly what they do teach SALTS as the ones you see for verbal dyspraxia have to have had extra training as do the ones for autism.

Who did the tests for autism/AS? (can you test for AS at 3- I would have thought that as he isn't speaking at 3 you couldn't officially get an AS dx anyway as they have to be talking by around this time to fit the criteria). Has anyone carried out a CARS test- you could do that yourself if you can get hold of a copy of the questions- I may have one in my possession soon- that can be carried out on young children. The other alternative is the CHAT test- my autistic son would have just about been able to pass it a 3- but if you can remember what your son was like at 18 months it may give you more of an idea.

Davros Thu 29-Jan-04 14:07:06

Agree with Jimjams that its extremely unlikely you could test for AS in a 3 year old who doesn't have much language. Also, I too thoughyt that all SLTs have the same training but possibly different experience. I would still keep all options open.

AndiPlusOne Wed 04-Feb-04 19:27:19

Thanks Jimjams & Davros. Sorry I missed a couple of days. Been busy doing my homework & pretty happy with the results .

By the way - AS/Autism tested by community paeds using a questionnaire! She saw him over two visits and couldn't believe the improvement in him. Then we had a not too impressive visit to another one at the local childrens hospital (at the insistance of the community SALT). She was VERY confused, she misunderstood 'bored and tired child with baby toys' for 'repetitive behaviour' I disagreed and she backed down when I challenged her. (Not something I have ever done before but seem to be making a habbit of now!) So I cut her short and said I'd call her if I needed her.

Spoken to audiologist from National Deaf Children Society. She agreed with you regarding SALT (community SALT). Said that we should ask GP to make sure we have a SALT who is experienced AND trained to deal with hearing problems. Also said that it was NOT unheard of to have Glue Ear and Autism mis-diagnosed because a lot can depend on the age/timing of it and how the child reacts.

Saw GP yesterday, prior to another ENT appointment, because I had request from nursery who said his ears were causing distress. GP is absolutely certain it is "Just a hearing problem" but added that it appears to be affecting him pretty badly & discussed possibility of having adenoids and/or tonsils removed at same time as gromits fitted. BUT have to wait a few more weeks for full report from ENT to reach GP. We're very lucky to have found a GP who is also a manager of the local Primary Care Trust. Seems very clued up and brilliant with children. Advised to hold off any assessments for a few months - until hearing sorted.

They seem to have me down as "emotional" and "obstructive" but GP said so I should be. He had similar experience with his own children being assessed. Good bloke really - happy to take charge & offer his support.

Will let you know when I hear more.

THANKS for letting me whinge

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Queena Thu 06-Dec-12 02:13:44

Hello, i know this is an old post but i am in the exact same boat as you and would love 2 know how you got on.

Gem1999 Thu 04-Jun-20 18:56:01

I know a lot of these posts were a while ago can anyone give me an update I am going through a similar thing with my 23 month old

LaniRae Mon 15-Jun-20 23:00:32

I would also like to know . My little one is nearly 4. They had grommets fitted last year due to glue ear in both ears . When she has bad ears her behaviour is really naughty especially at nursery. She is hyper active with it too. She still has frequent ear infections one every month at the minute. Her speech is delayed and her development. I dont know if she has glue ear or if she has asd/autism. No one has ever mentioned it to me (nursery,doctors,speech therapist) so I dont know. She doesnt always respond to her name, cover her ears alot at certain sounds or if I sing!! Lol
Her attention isnt very good at all and she doesnt concentrate on things for long, she gets frustrated very easily.

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