Social communication disorder

[Susiejo77]

Hi all, so I have posted about glue ear before, but I’ve just had a shock wave from getting a private speech therapist to come and help my 19mth old son communicate, she has said in her opinion my baby boy has a social communication disorder - of course my first thought is autism? Am I being premature like my husband says by thinking this? So a bit of background is needed, my lovely baby boy babbles all day, sings tunes of nursery rthymes and does some of the hand signals, like incy wincy spider and wind the bobbin up, he points, but rarely and claps when he wants to - not on demand. I always thought he had good eye contact, and he does when we are singing nursery rthymes - ST says no!! She said it isn’t like a NT child, he’s my first do I have no comparison. He had a bad start, he had terrible reflux, screamed for 4hrs at a time, finally at 6mth I got the doctors to agree a amino acid formula and he improved slowly but he had feeding refusal by then as he was in a lot of pain. He started walking at 9.5months and was running by 10, I suspect he realised if he moved the pain was less, or his stomach muscles were stronger, but he certainly can move, climb, navigate around, climb up and down stairs now, obviously I still hold him on the stairs - but he is able to do it on his own really. So he didn’t have a great start, I only started to enjoy him after 10mth old and then at 14mth wham - I started to worry about his development again!!!! He response to name is bad, eye contact ST saysisnt great even though we thought it was good, he hand gestures only really started after he had grommets fitted at 17months for persistent glue ear, which I suspect happened because of the reflux and dairy allergy - I can’t believe how unlucky he has been, poor little boy hasn’t had a chance to develop properly yet in my eyes. ST has said it’s nothing to do with lack of hearing and now I have this to deal with! But I’m rhinking does a social communication disorder always end in autism? Guess I’m just preparing myself - thanks for any advice anyone can give me

I’d like to add, I’m in no way implying that having a child on the spectrum isn’t wonderful, I’m just starting to process this that’s all, as a beginner - I hope that makes sense? I certainly don’t want to offend anyone. I have no problem with him being autistic it’s the uncertainty of his future outcome being so young I’m struggling with

Yes, social and communication skills are what they look at when assessing for autism but he is very young for that assessment at the moment.

I personally wouldn't underestimate the lack of hearing over such a time though. If he only had grommets fitted two months ago, he has a lot of catching up to do with his hearing.

Thank you. This was my thoughts on the matter. I realise wonderful things can happen with autism but I’m just getting my head around all what’s he’s been through, it makes me sad as he has struggled so much already

Hi there, so much of your post resonates with me! I thought my son had very good social skills and definitely gave us eye contact etc and was very verbal at home though in different social settings wasn’t I think nursery etc is where issues become more obvious. I remember when a private speech therapist I took him to like you lol mentioned the lack of eye contact i was a bit shocked as he was different at home.

my son was diagnosed with autism at 4 years old. When we asked the paediatrician at the time where on the spectrum would he be she said quite high functioning. Hes in a mainstream school and doing so well academically and socially much more than I could have ever imagined.

I’m in no place to say if your child has autism or not but you should take every day as it comes and definitely act on any worries you have or professionals have. It may be something and it very well may not

Sel89 I thought my little boy was so socialable until this ST came and she pointed out to me how he likes time to himself, I was like don’t all children?!?! I’m relieved of him constantly bringing me books, but now I realise he’s eye contact isn’t as good as I had thought, I don’t know how I didn’t realise. I had put all his communication problems down to lack of hearing - I still believe that obviously wouldn’t have helped any situation - let alone a baby that was crying all the the time in pain and we barely played because I was consoling him or trying to feed him one ounce of milk 20times a day which he just hated, he was constantly hungry, but as soon as he saw the bottle would refuse - it was soul destroying. So, I guess I’m still just struggling with how much hardship this poor little person has been through already. Sel89 - how is your son doing now? I’m just praying my baby boy can go to main stream - but my biggest fear is bullying - I want to protect him always. How is he doing, hopefully the kids at school are educated now to think autism is the coolest thing - super hero kind of thing. I think I’ll be sending him in with some sort of presentation to blow all the other kids away, and they will think his quirkiness is cool. Sorry for babbling

No, social communication disorder isn't always autism.

How long has he had glue ear? And how much has he been hearing (or not hearing). Think about the periods of time when you are certain he has been hearing 100% of what has been said to him, how much of the time was it, are there big gaps, or times when you're not sure at all. What is he hearing now?
His understanding of language is not going to be where it would be for a child his age that has never had glue ear. There is going to be chunks missing.

The 1st 3 years are the time when the foundations of social communication is learnt, if he hasn't been hearing fully all this time, then areas will be lacking. that doesn't mean they can't be learnt, just means they have to be purposely taught, by going back and reteaching from the beginning. It's hard to talk to a toddler like a baby, but the basics need to be there for the rest to follow.

Is your SaLT a deaf specialist SaLT? (and if not, why not, why has he not been assigned a deaf specialist SaLT when the delay is deafness related.)

Also think about that eye contact. Where is he looking? Does he know to look at eyes? My dd was lip reading, she was looking for other clues in the environment around to make sense of what she wasn't quite hearing. (We learnt that with hindsight).

Just because this SaLT has made you question it, (and his sociability, no kid is sociable all of the time), it doesn't necessarily mean she is correct.

Hi Frusso, thank you for your response. I’m afraid we have no idea how long ds had the glue ear for. I do remember I took him to the doctors when he was about 7months old and I said I didn’t think he could hear me, his ears were just looked at by the gp and I was told they were fine. I put it to the back of my mind, I know now that when we were finally referred to the ENT specialist when i returned ds to the doctors as he was responding to his name and not mimicking, he was 14mth old that the gp wouldn’t be able to see the glue ear. I strongly believe the milk allergy was the cause for both the reflux and the glue ear. He also had his adenoids removed as he was suffering with bad sleep and sleep apnea which was terrible. So he had the operation for grommets and adenoids removed at 17months, he was very ill for around two weeks afterwards. We went back for a hearing test 3weeks after the op but the results weren’t that clear again, ENT and audiologist said ds lost interest in the test. So I took him back only a couple of weeks ago and the ENT specialist said he could confidentially say ds had good hearing in one ear. He was unsure about the other but said he thought he could hear from both and said he was sure that his hearing was good enough now for him to start to learn to talk. This was all done privately as I wanted it done as soon as possible. I had taken him to a walk-in clinic to see a speech therapist on the nhs - we waited 3hrs to be told he was too young for a referral and to come back in 6months time. So, I found the ST privately, I haven’t seen anyone ST on the nhs, I must admit ST didn’t seem that interested in the glue ear and was very ademant that that was not the cause of ds issues.

Frusso, I’m now think I need a second opinion with a ST that deals with hearing problems. After the grommets we didn’t see improvements in his speech until a month after, although his concerntration has improved at nursery, he now sits through circle time and has started to join in doing actions to songs, clapping and wind the bobbin up and spider actions. He also just started pointing, although rarely. We had non of this before the grommets. He has also starting humming songs and saying one of words, his singing is very muffled but we are working out what he singing by the tune of it.

The ST said very frankly to me. DS has a social communication disorder and it was nothing we did, he was born with it and it had nothing to do with hearing. I was taken back by her frankness tbh

When you sing to him, he has really good eye contact, he does tend to sometime look through you, like near you but he’s not quite looking at you - if you know what I mean. I’ll try and see if he’s looking at my mouth more

I should ad that my son start to do these little grimacing and tending of his hands and arms shakes. It started just before he was 1 when he got excited. At first I thought ohhhh that’s unusual but kinda funny. Then they became more frequent and I got worried it was some sort of seizure. I took him to the doctors and he was referred to a neurologist - luckily I had s good video evidence of what he was doing - they said these were behavioural shudders from frustration of not hearing properly. Then we stopped seeing this when he had the grommets fitted until the last week, when he did it twice at nursery. They videoed it and ST said to me, it wasn’t behavioural shudders - it was Self stimulation and it was a sensory issue!! She really has really knocked me for six

but my biggest fear is bullying - I want to protect him always. How is he doing, hopefully the kids at school are educated now to think autism is the coolest thing - super hero kind of thing. I think I’ll be sending him in with some sort of presentation to blow all the other kids away, and they will think his quirkiness is cool

He's 19 months old and already you are planning his entrance to primary school.

In the nicest possible way, back off, leave him alone for 6 months and stop taking him to every development specialist you can think of expecting a diagnosis and prognosis and mapping out his likely future.

Let him be himself, stop looking for signs and things that may be wrong, stop focusing on possible deficits, let him do whatever he does and go with it at his pace.

Enjoy this part of his childhood, be with him in the moment, enjoy sharing a story with him and stop analysing if he's looking at your eyes or your lips. Stop looking for problems and let him be.

IF he's autistic, he's autistic, if he's not, he's not. Nothing you do will change that, but you need to stop catastrophising and enjoy this time with your little boy who has just learned to hear sounds and make more sense of the world.

Rebecca Burgess has done a cartoon representation of the autistic spectrum, two screenshots below. It' not a linear scale.

My son is moving on to year three now. He doesn’t have an EHC plan as school are supporting him well and providing social skills clubs, some OT and other interventions. He is top set in all subjects and has come along way!! I too was worried about bullying at first especially as some kids are mean but he’s been ok so far high school might be different though not sure!

You do seem over worried and I was probably the same as you going to private specialists etc as he was my first I have a younger son now too, maybe wait a bit longer and see how things pan out. But then again on the other hand sometimes it’s good to know if a child has issues early on so u can help more and be taught more strategies etc..

And to be honest even though a speech therapist cannot diagnose autism on their own if a speech therapist or any other professional had concerns about my child I would definitely act on them as many professionals adopt the wait and see approach! What did the speech therapist advise??

She said I should get a book called “more than words” - and the do a visual chart aid for him. So I show him a picture when it’s snack time, bath time etc... She also advices to get portage involved to do a home visit - I phoned the health visitor though and she advised me know one will see him until hes 2 and portage is the same. So my hands are tied until then. I did ask the speech therapist to do a report, so I have a gp appointment and I thought I’d see if it might help to get some nhs support somehow sooner rather than later, we will see. Can I ask you want first raised your concerns about your son? It sounds like he had words? My son has said around 25words but he’s only keeps a few for everyday, the others seem to be one offs and we haven’t heard them again.

It’s natural to worry about the future especially when ASC is in the frame. Don’t! You can’t predict how things will go. Literature tends to be unnecessarily gloomy imo as it’s a relatively new diagnosis and there’s not a lot of info around ageing. The older autists in my family have done well and are sociable. Look to your own eccentric relatives for how things might be!! In terms of signs Birkbeck have done a lot of research in babies and my DS showed signs in a study there at 19 months.... we wrecked the control group! He was 7 at diagnosis although I “knew” at 2. School maintained nothing was wrong (and I was probably just a bad parent!!) right up to the last. If your gut tells you there’s an issue research says you’re probably right. Don’t let people fob you off. DS also had “reflux” and glue ear. He went on to severely restrict his food intake and range. It’s all sensory avoidance of texture and touch around his face. If I give you one bit of advice - seek diagnosis via the SALT before you get to school. Use the info this SALT has given you to access the assessment clinic. If it’s a no then you can be relieved. If it’s a yes you have saved potentially years of being fobbed off by your local CAMHS. Diagnosis doesn’t bring masses of help but it should allow leeway and support at school. DS is on an EHCP now after I applied (school said too able to qualify for help - bo**ocks!). You may have to be prepared to do this too so start keeping a diary now for evidence in case it’s necessary. Husbands and random people all seem to want to soothe and say let it lie. I’m peeved I listened. Now I know other mums in similar situations I know better- get your elbows out and start advocating for your child. Best of luck!!

Sorry just read last few posts... use the time wisely. Get letters or reports from all professionals who support a social and comms assessment. Call your local children’s team and get the forms. Have all your ducks lined up then fire the forms in as soon as he’s 2 as there will be a wait until he’s actually assessed. Actually it’s all the bliddy waiting and hoop jumping that I find the most difficult. That’s the main consistent theme!

Oh tartanterror thankyou!! What’s your local children’s team? I’m probably being daft - I’m just finding it all bewildering at the mo. Thank so much for you advise!!

The fussy eating is starting now!! What should I do? Is that a OT you need to get to help with that? Or what sort of therapy? Many thanks

Also, please excuse my ignorance - but is a gluten free diet beneficial? He’s already dairy free. Thanks again