Glue ear and severe communications delay or ASD

[CK1988]

HI there,
I'm looking for anyone who has experienced similar or who can offer advice
My DD is 2.4 years old. She has a severe receptive and expressive language deficit (no words yet) some background:
Aside from communication, she is developing very well, walks, runs, climbs, uses fork and spoon, and is generally physically capable of most things
She had severe glue ear, we don't know when it started but we assume from 1-2years she had it. She had grommets in and adenoids out just before she turned 2.
As she was developing so well and was clever, we didn't notice the deficits in her communication and thought the grommets would sort out her speech problem (we lost time due to wait and see, waiting for appointments etc).
The words never came so I look her for a private SALT assessment who told us we should be 'very concerned' that DD has no receptive language, no expressive, no joint attention, more interested in objects than people etc. She basically told us our DD was on the ASD spectrum and advised us to get a multidisciplinary assessment (we have applied for all we can and are getting private SALT while we wait)
Anyway, this was 7 weeks ago and we sprang straight into action using Hanen methods, private SALT, removed all screen time, basically changed how we parent. DD has responded really well and her joint attention and eye contact and general interaction has come along massively in 7 weeks
To summarise
On the not so positive side - She doesn't speak, understand words, point, wave or gesture much (she gives high 5's and kind of semi waves), she will sometimes hand lead us when she wants something
On the other hand
She has no repetitive behaviours, no rigid routines, no tantrums, no other ASD signs (apart from communication), she is integrating much better in creche, very affectionate, smiles, laughs, shares enjoyment through eye contact and smiles, follows a point, very clever and physically capable i.e. she just gets herself whatever she wants so has no huge need to point/communicate, and lots more capabilities and positive attributes

My question/comment really is: I feel the SALT really overlooked the severe hearing loss my DD suffered during such a vital time in her communication development, has anyone every experienced such a communication delay due to severe glue ear?

I also believe other factors contributed: mask wearing while she had hearing loss, we gave her too much TV/screens (great improvement since we removed them), we did not model pointing/gesturing for her, we did not interact with her as we do now, (we were too focused on the hearing and neglected the non verbal communication elements).

Also my mothers gut instinct tells me its not ASD as this suggestion was a bombshell to us and my DD does not meet the criteria in all 3 areas (she 100% meets it in the communication areas though...)

Any response would be much appreciated!

Hi @CK1988 just want to bump this thread for you. I don't have any answers I'm afraid but wanted to reach out and sympathise as an in a similar situation in the sense that my LO definitely meets ASD criteria communicatively tho not in other characteristic areas (as far as I'm aware/thus far). So like you I'm wondering what happens when there's deficits in one area and not others. The one thing I will say is I don't think they hand out diagnoses very easily so accept the referral and any support offered. If it turns out to be ASD then you have the structures in place and if it doesn't well then you haven't done her any harm. It is often said that glue ear mimics the symptoms of ASD and it's not been too long since your daughter has had her grommets so perhaps she's just acclimatising. Hopefully someone else will come along soon to offer their own understanding and experience xx

@Cluelessmum5 thank you for the reply, i have been reading here and some posts from @lingle and @essexmum777 have given me hope (not glue ear related though)
since the asd seed has been planted i now find myself analysing everything DD does and im driving myself crazy when i know i should enjoy her, im so angry at the SALT who made such a judgement after spending 30 mins with DD and then said she couldnt help us….(ive since spoken to other SALTS who have been much better and focused on DDs positives)
im in ireland so will be waiting a long time for assessment, her only need is speech therapy and of course its the role of the parents that make the difference
if you havent already, i would read through previous @lingle posts and use the hanen methods to see if your child responds
also i realise that the problem is still the problem regardless of the cause…its just hard not to fall into the google rabbit hole!
good luck! X

@CK1988 Thank you for your reply! Oh boy, I have googled every single variation of question looking for answers. It doesn't help that when you search speech delay the first thing which pops up is ASD. Thank you for tips - I have searched for lingle and found lots of different threads, any in particular which are helpful? Can I ask a question about your little one - how exactly did the salt come to this conclusion? I.e. what 'tests' did they do over the 30 min appointment?? I agree it's a very short observation to draw a conclusion like this, but sounds like you've since found better therapists to work with. I think id like to have a SLT come and see us but just wondering where to begin! x

@Cluelessmum5 i feel you so much…google can be a scary place and there is so little info on this exact topic, some anectodal posts have given me hope though…i always feel upset when ive succumbed to googling….
SALT 1 did a play based assessment for 30 mins and concluded that DD had severe communication deficit (agree), had no interest in ppl (disagree), didnt respond to ‘scolding’ tone (disagree…dd responds to no when i say it, SALT just used a different noise and dd ignored her), varied use of eye contact (disagree, dd has v strong eye contact), salt said dd couldnt play with age appropriate toys (disagree she can) etc. she wrote a horrible 6 page report and said issues were due to ‘pervasive developmental delay’ and that she couldnt help us, i cried every day for a week when i read the report…
flash forward 7 weeks and dd is doing much better due to changes in parenting, things that have helped are:
no screen time
follow childs lead and get involved in her play
use gestures and simple verbal instuctions (point up the stairs and say up stairs)
bath time is great for interaction as dd cant run away haha
give her choices ie these socks or those socks, let her reach for preferred item (she doesnt point)
always get down to her level and look her in the eye
use people games, ie chasing, throwing, jumping, swinging…dd loves all that
just get involed in your childs world
have patience and persistace, its about inchstones not milestones…

has your child had grommets in? I wish id started all the above even when dd had her glue ear…im angry at myself for thinking the grommets would solve everything and she would just start talking

dd is 2.4, my new motto is ‘thrive by 5’ im trying not to focus on her deficits aged 2.4 but focus on getting her where she needs to be by aged 5

also at the time, i listned to way too many people who said ‘oh xxx didnt talk til they were 3 and theyr totally fine’ etc
this is nice to hear but it doesnt help…a delay is a problem and it takes hard work to fix it…its a hard and definitely lonely road and there are no guarantees….

a good SALT and parent training will help x

@Cluelessmum5 just to add…by a stroke of luck, we ended up having an off the record meeting with a SLT (a daughter of a work colleague of my husband) who specialised in asd, children, delays, disorders etc
we went to her home and she did a play based assessment (no mask) she was a lovely person and very warm and engaging, dd responded very well to her, gave eye contact, joint attention, communication to continue play etc
this SLT (2) played interesting games (blowing up balloon, mr potato head, tower building etc) and dd was way more engaged (what can i say she just liked her better). SLT conclusion (no report) was that dd wouldnt meet criteria for asd but couldnt rule out that she was on the spectrum (very fair) dd had joint attention, dd had lots of positives and capabilities
Her advise was to work on things at home and use SLT to stay on track
needless to say we walked away from
that assessment feeling much better even tho it was just a casual arrangement…
she also aknowledged that the glue ear would have definitely affected her communication and speech….

Hi OP.
I think you need the thread about Laura Mize (sp). That was the only source I found about receptive language delay in isolation. Let me find it.

www.mumsnet.com/talk/special_needs/752062-another-receptive-language-programme-on-the-radio-with-the-annoying

this is for receptive language and I removed the the scary/dispiriting bits. I think it was the second of two.

Ah here we go OP.

www.mumsnet.com/talk/special_needs/750157-Radio-programmes-on-receptive-language-delay-www-teachmetotalk-com.

True to her promise, Laura heard us: teachmetotalk.com/2021/12/20/hope-what-every-parent-wants/

nice one Laura.

nolite te bastardum OP :)

OP I think looking back that our first SALT was a bit burnt out. Might be the case with that first one of yours too?

the first salt did persuade me to use visual “scaffolds” though which helped enormously with avoiding anxiety & speeding up learning so some good came of it.

Stanley Greenspan’s videos would be good for you. He saw the family as the fundamental unit of the little one’s development. He wrote a book but his prose style is pretty impenetrable. Videos are better. Floortime it’s called.

www.stanleygreenspan.com/blog/2014/12/how-do-i-help-my-child-interact-more

OP this is why what you’re doing is working maybe?

“The key,” says Dr. Greenspan, “is to extend the circles of interaction.” Once a child is somewhat engaged, you always want to extend the circles of interaction and get more and more purposeful. Play dumb with the child so they have to extend the circles of communication. The ultimate goal is the continuous flow of back and forth communication.

“Always look for the gleam in the child’s eye. Look for the affect. The biggest mistake to make is not looking for the light in the eye,” emphasizes Dr. Greenspan.

Be playful and flirtatious; don’t take it too seriously. Be emotionally expressive. If you are too serious when interacting, you won’t be emotionally vibrant enough. It takes a while, but your own affect system needs to be playful, subtle and expressive.

“You should treat whatever the child is doing as intentional. Once we get the child into multiple circles, then we are trying to get the circles more complicated,” notes Dr. Greenspan.”

….in other words, if you’re both laughing, it’s probably working.

@lingle thank you for taking the time to comment…i hope things are well with you! your previous posts have really given me a boost when i needed it…i will re-read these posts now, theres so little info out there that these are really valuable!

its funny you should mention the ‘glint’ in a childs eye, dd has such a glint she’s almost irridescent! Her joy and engagement with me and DH is probably what led us to blissfully ignore her gaping communication deficits, and think that her speech problem would be solved by grommets…

i will check out dr greenspan as i havent come across him yet…dr camarata seems to talk some sense as well but i dont want to get sucked into ‘theories’ i just want to face whats in front of me if that makes sense!

laura mize is v practical, likeable and generous with her content…i do find the word ‘autism’ comes up a lot and gives me that feeling in the pit of my stomach…but thats not her fault! I also agree with the ‘hope article’ its definitely a fine line to walk as an SLT who sees every end of the spectrum/scale

re: SLTs…ive spoken to a few now and only 1 has put the fear of god into me by trying to label my 2 year old…the others have been a lot more helpful and noted that there is a variety of s&l delays/disorders out there and that labelling so young would do more harm than good

really wishing i could take my crystal ball and look into the future but alas i cant, for now il take my smiles, babbles, hugs and count my blessings

x

Check out mrsspeechiep on Instagram, she is a SALT and posts brilliant stuff about ASD/ADHD etc. DS is almost 3 and up until recently also had no noticeable sensory issues and when assessed by a SALT she said that were some ASD characteristics but he also had some good eye contact and joint attention etc so she wasn't sure. He hasn't been diagnosed yet but I'm now 100% sure he will be because I'm starting to see so many more behaviours which fall into that 3rd category you mentioned. 6 months to a year ago I would say I was probably 50% convinced he was Autistic.

I think the oddly named “teach me to listen and obey” DVDs may be lighter on joy-sapping words.

Summary of receptive language stages taken from Laura and posted on thread mentioned above. Op I think that the link is playing up but the thread is there. Google the words

i think it’s a bit odd the first salt said no receptive language at all. Lots of salts apparently don’t have huge expertise in it.

sounds like your fully engaged joyful enriched parenting plus maybe some visuals plus an understanding of these stages will combine to make you unstoppable.

LAURA’S STAGES
lingle · 05/05/2009 16:34
Question-asking skills - receptive language.

In order of development (but I don't "do" milestones so I'm not putting any ages in here)

1 "where's mummy/teddy/something exciting?" by looking at the object or otherwise reacting in a way to show understanding.

1. Choice questions

start with holding one of each in your hands or using a visual.

1. "where's the X?" on a picture - respond by pointing.

1. Go get/show me the X.

(v) ideally, from another room
(iv)if that's too hard, try from across the room
(iii)if that's too hard, from a selection on the floor

(ii) if that's too hard, from two objects in the adult's hands
(i) if that's too hard, adult takes child's hand and selects hand over hand.

1. "What's that?" - respond with appropriate noun

1. "Yes/No".

NOW TO THE TRICKIER ONES - I WILL NOT SAY WHAT AGE LEVEL THEY EXPECT BECAUSE THAT'S NOT HELPFUL BUT THESE NEXT ONES SHOULD ONLY BE ATTEMPTED WHEN YOU CAN DO THE ONES ABOVE.

1. Respond to "where's mummy?" with an answer like "at work" or "in the sitting room"

1. Object function questions

"Who says moo? does a sheep say moo? NO! A Sheep!"
"Can you point to something that we wear?"
"what do we need to make dinner? yes - the pot".
(more details on this in my other thread of today)

1. Critical thinking questions - making inferences.

"What do we wear when it's cold?"

10. Categories
    "Which one is an animal? Which one is a building?"

11. Negation - "which one is not wearing a hat?"

12. Quantity
    "Can you give me the rest of them?" "Can you put some in the box?"

Hope that helps.

Ds had glue ear from 10 weeks old, shown by constant ear infections. He had grommets at 20 months, 3.6yo, and 6yo.
However he also has ASD and ADHD. He wasn't diagnosed with those until he was in his teens, partially because when I suggested it, it was put down to glue ear as the behaviour can mimic ASD behaviour.

But I'm looking at it from the opposite side to you. Having him diagnosed was wonderful for him. He finally was put in the position where there was a reason not just him being naughty. It's opened things up for various help and he's much happier as a consequence.

I'd advice you to go along with the assessments. They're more likely to underdiagnose, especially with a girl, than over-diagnose. If she does receive a diagnoses, then it means you are in a much better position than ds was. I wish I had really pushed for it when I first started having suspicions simply that it would have saved a lot of upset from him and given him help when he needed it.

Wow loads to catch up on here! @lingle thanks for taking the time to post all the above, very interesting and useful. Good luck with everything @CK1988 keep us posted x

@lingle thank you for all that content, much appreciated! I will post an update here when i have one!
feeling positive today as dd is definitely following more instructions (with gestures, routine ques etc) she even gave a semi wave at some ducks earlier on today!
i honestly think that she has had to process so much over the last 7 weeks that its all in her head but just not coming out properly, and i know that will take time (if only i had more patience!!)
re: pointing (or lack of which is a huge worry of mine) i spoke to a SLT during the week who said that reaching is still a good indication (which dd does) so im trying to not get too hung up on that, she sahres enjoyment with eye contact and her big toothy grin :)
i dont know if dd is ND or NT but i do know her only need is SALT regardless of any diagnosis (in Ireland we will be waiting a long time anyway…)
I 100% beleive early intervention and family unit involvement will make all the difference in the case of a child who does not clearly present as either ND or NT
glue ear may have been a massive red herring but right now its too hard to tell
thanks everyone for the replies x

Pointing only matters because it’s an example of showing I think?
pointing isn’t a goal in itself :)

so a typically developing child without expressive language might show good mastery of showing through his/her pointing prowess. But that child would already have figured out “being shown stuff by mummy” I would have thought. Whereas we have to teach our kids that. We may use pointing ourselves as part of that teaching

happy to be corrected.

Hello!

Your DD sounds similar to my son who is the same age, although my sons receptive language exceeds his expressive language (5 worlds) ASD has been in the back of my mind however there are many many different speech and language disorders/delays I think ASD is just a very popular topic at the moment.

My son doesn't point or wave, however does use a lot of eye contact to get his point across along with reaching also. When doing research I know that each child with ASD is different however my son doesn't seem to fit when actually looking at footage and vlogs of various children. Although I know it is still possible.

He does have some little quirks, however if he did have better expressive language I don't think I would even notice the quirks as all toddlers have them. What I found that helped us, is OT over ST. My son seems to learn from play and movement rather than the way a ST would conduct a session. Although my son isn't big on gestures he does understand them, looking where I'm pointing, reaching to be picked up, holding my hands when I put it out, high 5s etc. My son is also booked in for grommets to see if anything improves as he also does have a long history of glue ear and ear infections.

My paediatrician has mentioned that children continue to grow and change up until they are 5/6 so milestones are sometimes a poor indication of development.

@lingle yes some paeds/SLT have acknowledged that its not the point itself but the intention behind the point that matters...but google/instagram etc would have you think otherwise...i do agree that pointing to request or share attention would be good indictors of communication to come though in a 'typically' developing child. ironically we never modelled pointing when DD was younger (had no idea it was so important) and between 1-2 DD had glue ear and just became very independent, right now i would say she has no real 'need' to point (although i do dream about the day she points up to the sky and say 'look mammy an airplane'....)

@ttsmama i swear you have just described my DD to a T! she reaches to be lifted, smiles, laughs, gives high 5s, sometimes claps, has a bit of a delayed semi wave, but now she is following directions so much better i.e. me pointing upstairs and saying up stairs etc. even when I get her to go to her shoes she is so independent she just tries to put them on herself rather than bringing them to me....
Definitely try get the grommets for your son, you may see some big differences!

I definitely think that until a child is 5/6 you may not fully know how well they are developing and i find in the US they seem so quick to rush into diagnosis and will literally align every little toddler trait to being on the spectrum...ie hugging, jumping, touching things, fiddling with things, general quirks...isnt this just normal toddler behaviour!!

Hey

OP, how is your daughter now? This sounds exactly like my son, he's 2.5 almost and zero words. He's got glue ear but they say his hearing isn't affected enough to need gromits. He babbles a lot and is very affectionate, starting games with others himself etc. how did the "thrive by 5" turn out?