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When to be concerned by limited eye contact?

31 replies

AlwaysVacant · 05/06/2018 10:43

Hello all. First time poster so apologies if I'm breaking numerous taboos. I understand there are hundreds, if not thousands, of similar posts but none feel like they tick exactly the same boxes hence me adding another one to the heap!

My little boy is 20 months and he's loosely ticking some boxes for autism and I basically wanted to know if/when I should be concerned. I'm well aware autism isn't a death sentence but if he does have it I want to make sure he gets all the help he can as early as possible. If it turns out I'm being ultra protective and paranoid then..meh, he's going to have to accept I'm probably going to be that way his entire life!

He's always been an incredible happy baby and is tonnes of fun but there have been a couple of little flags along the way which have concerned me. The problem is, these are countered by some very un-autistic behavior so I end up feeling incredibly guilty all the time.

My concerns were that as a younger bubba, 8-10 months, he was a big hand flapper when excited. I never knew if this was because he had limited control and was just expressing joy or if it was for other reasons. Nowadays that's almost gone but there are little glimpses from time to time.

He also makes limited eye contact, especially close up. I know this is a biggy but he does make some, especially with his mum (yeah sorry, I'm a dad on netmums - netdads s*cks!) and even moreso with strangers and new things. I worry sometimes that maybe he just finds me dull - ha! A member of his nursery raised the eye contact thing as a potential issue but his key worker there thinks he's fine and I'm pretty sure the woman in question got told off as she won't discuss it in the slightest..

Last of my main worries is that he can sometimes be very focused on something and you need to say his name repeatedly to get his attention. There's quite often a delay when you ask him something before he processes it if that makes sense. If we say bye to people there will be a good long delay until he says it too, normally when they're just out of hearing! The doctor has referred him for an ear check-up in case that's an issue but we've not had our appointment yet.

Other than that he's about as normal as a little bulldozer can be. He walks, albeit a bit like Herman Munster, and isn't afraid to explore new things.

He talks. Got a pretty impressive vocab though I imagine only his mum and me can identify half of them. He doesn't string them together often but he has done 2-3 words every now and then and isn't showing any signs of speech regression.

He adores animals and other children and is enjoys interacting with both and he's getting better all the time at new textures. He used to be a bit funny about a few things like foam, jelly and grass but he's overcome that. He's still not sure what the heck sand is all about but, hey, 3 out of 4 ain't bad right?!

He also seems happy with change too. He has his favorite toys but that varies and he's never been one who gets fixated on stacking, spinning or other so called "tells". If you ask him if he wants to read he'll tell you what book he wants and plonk himself on your lap to listen. He'll turn pages and point out things he sees in it too.

I've tried referring him but were told we can't do anything until he's 2 at the earliest. My family think I'm paranoid and I hope they're right!

If anyone has made it through that then...wow. It was a bit of a brain dump in all honesty, work are probably entitled to fire me after the time I took out to write it.

Am I being stupid? It's not like I don't spend my days fixated on it and not enjoying how amazing he is but I want to know if it's something people have experienced themselves or if people feel we should push to get a check up. It feels like every time he does something great I keep going back to the nursery staff commenting on his limited eye contact...which is probably why she hasn't mentioned it again in all honesty.

OP posts:
AjasLipstick · 05/06/2018 12:10

He sounds ok to me....not an expert though obviously! I have watched my friend go through this but her son did get a diagnoses and his symptoms were much more pronounced than what you describe...though all children are different.

My friend's son would "vague out" and stare with a blank expression at the trees or at a pattern on a wall...for ages. He'd also never come up to us with a toy or show us things. He didn't look at things which we pointed at...no shared interest whatsoever.

He never related to other children or even adults...the only time he did was if you gave him a pen and paper and asked him to write certain numbers down. He could do that from about 18 months.

Have you done the MCHAT? It's a sort of quiz which suggests if you need to be concerned or not. Again, it's not a diagnostic tool.

www.autismspeaks.org/what-autism/diagnosis/mchat

AlwaysVacant · 05/06/2018 12:56

Thanks AL :)

I have tried that test before actually as has my wife but we came out with very different scores! Feel it needs a "sometimes" option in there rather than just a yes/no. When I do it I get a medium result whereas she'll probably get low risk.

I've tried raising it with GPs but found them to be incredibly dismissive to date. TBF though I've found that with any little thing I've gone to them about with him. Maybe I just have a crap doctor! Do you know what age your friends' child was when he was diagnosed?

OP posts:
HaveYouSeenMyHat · 05/06/2018 13:25

I have a DC with a diagnosis of autism. Also, my job is working with children with autism.

At 20 months it’s very difficult to tell how things will pane out for your DS. In the USA they diagnose children as young as 18 months but we are much more cautious in the UK with preschoolers. It’s unlikely you will get a referral under 2 years and I think giving DS so time while keeping an eye on the areas that concern you is all you can really do at this point.

Does he point (to show you something of interest eg a dog in the street) and spontaneously wave? Getting his hearing checked is good, just to rule that out, so it’s great you’ve auctioned that.

HaveYouSeenMyHat · 05/06/2018 13:29

Also, it would be worth getting his eye sight checked as well.

SluttyButty · 05/06/2018 13:52

Mine didn't get a diagnostic until he was 7. His problems were fairly apparent from birth. Silent baby, no babbling, no speech until he was three, head butting hard surfaces from frustration, obsessive tendencies, spinning round to self regulate.

Aged 2 we had to start doing the hoop jumping necessary to start the diagnostic process off. I had to attend parenting classes (he was my 4th) just in case it was me Hmm
He was assessed many times by a paediatrician, salt etc.

They needed to see a span of several years with consistent issues before we were finally sent to the paediatric and CAMHS clinic to get a diagnosis. It's a long slog and there's no help after diagnosis for many of us.

And for everyone's sakes, don't interact with anything that autism speaks puts out and NEVER light up blue. Vile bunch of people that support making the child NT rather than accepting an autistic person as they are.

AlwaysVacant · 05/06/2018 13:58

I didn't even think of his eyesight! I always assumed it was pretty good tbh, he spots things a mile off that I don't to the extent I used to think he was making things up...he never is.

He's not a "great" pointer but he does do it from time to time, usually when he wants an item. It's more of a general gesture in said items direction, he's not the daintiest of boys at the moment :)

He's also not much of a waver tbh. He does do it but it's usually on his own terms. The cat gets most of them in all honesty or me when he's trying to get me to leave the room so he can spend it alone with his mum! Sadly (for me) the best sentence he's come up with to date was "Bye bye daddy bye bye, mummy now". This was followed by him waving goodbye, leaving my lap, the room and closing the door on me with a final wave. Ungrateful little punk...

Is there much we can do for him at this early stage? I don't want to force him to make eye contact if he doesn't like it or it makes him uncomfortable though if there are simple things that can encourage him without pushing it'd be great to know.

I really appreciate the help/insight.

OP posts:
AlwaysVacant · 05/06/2018 14:05

Oh christ, that sounds like a nightmare SluttyButty. Sorry to hear you had to go through all that. I have a relative who had to go through the process and, imo, it probably should have been started a lot earlier but they started getting help from age 4. Best thing they ever did which is partly why I'm so keen to be proactive. I've seen a lot of comments on the net about how tough it can be sometimes to get diagnosed. From the sounds of it they were very lucky. Saying that, the majority of my paranoia has started from me going on Google in the first frickin' place!

Wishing you all the best with your little man.

OP posts:
HaveYouSeenMyHat · 05/06/2018 20:24

Just to give you an idea of our timeline: My DC was diagnosed before she started school when she was 4. I saw the paediatrician initially just after her 3rd birthday. They were keen to give her a bit of time to see how she progressed. I did have to push for the appointments though. It shouldn’t be the way but the squeaky wheel gets the most oil, unfortunately. Where I work, waiting times for assessment are running over a year. Awful for families to have to wait so long.

You’re right to be cautious about pressing your DS for eye contact. Some children find it uncomfortable. Others can’t listen to auditory information (eg your voice) if they are focusing on looking at you. You can gently encourage it by doing something fun (bubbles, tickles, pushes on the swing, rough and tumble play etc etc). Stop and pause. Wait for your DS to look at you before continuing.

As a parent, rather than a professional, my best advice at this stage is to enjoy your lovely boy (it does sound like you are!). Encourage his language developmental and provide lots of different play and sensory experiences. Re autism, I think things will become clearer over the next 12 months. I worried so much about my DC when I first noticed “red flags” in her development. But in the end I just had to try to put it to one side otherwise I was at risk of missing out on the pleasure of her toddler years. She does have autism but that doesn’t define her or us as a family. She is funny, sweet, gentle, annoying, kind, sensitive and loving!

PJ67 · 05/06/2018 23:06

I think he sounds fine. My middle ds has never had good eye contact and that used to worry me. He also did the hand flapping a bit when excited. He's now 11 and absolutely fine but I still have to tell him to look at someone when they talk to him. I'm not sure if it's just shyness but he just seems a bit uncomfortable with eye contact.

AjasLipstick · 05/06/2018 23:17

My friend's son was diagnosed at 2 and a half. It was pretty obvious though...even without a diagnoses, you could tell immediately. Well actually my friend had no idea but her nursery pointed it out. I had actually encouraged her to start him at nursery aged 2 because she was worn down with caring for him and I hoped they would point out the issues which I was not brave enough to do myself.

The reason she couldn't see it was that she'd had practically zero contact with children...never knew any.

AlwaysVacant · 06/06/2018 10:23

Thanks for all the input everyone, it's really nice to hear other perspectives and know you're not alone sometimes.

I guess I need to switch off and enjoy the ride for the foreseeable future. I'll ban myself from searching for any other symptoms for starters! He really is great fun, clever, cheeky and noisy, I just have to get in line behind his mum and the cat to get my kisses ration though!

OP posts:
PinkSquidgyPig · 08/06/2018 18:02

I work with adults who have autism and learning disabilities.
My daughter is 9 now, can be a bit awkward socially (shy, like I was/am) but is keen to socialise/join groups now.
But I used to wonder if she was autistic until I looked around and noticed that toddlers/very young'uns share a lot of characteristics with people with autism!!

So, inline with many other posters I'd say relax a bit, but just keep an eye out over the next year or so. Maybe make a note of things which cause you concern.

Most of all, enjoy this time with your lovely boy. It's passes way too quickly. X

Newmomma2705 · 01/04/2020 13:33

Hi just wondering if you could update as currently going through the same ? Thanks

Charlesjj · 10/09/2021 17:28

Any update to your son?

Hirewiredays · 10/09/2021 19:20

My boys hand flapped a lot when excited. He stopped when he could verbalise expression.

ttrrii · 18/09/2021 21:30

@AlwaysVacant
How is your son now?

AlwaysVacantmkii · 19/09/2021 20:19

Hi, I forgot my old login as it's been so long so but this is still me.

So its obviously a few years on but I'll update for those who asked.

We ended up speaking to a GP who referred him to speech and language development. Like us and everyone who came in contact with him they agreed he showed some autistic traits but generally functions fine. Getting onto that was a pain and took many months but when we finally did we had 4 sessions (pre covid) where they basically said he didn't need to be in it as his communication was fine for his age. Again though they acknowledged he def had certain traits so put us onto the proper waiting list so to speak.

At this point their concerns were his eye contact, high pitched sing sing voice (which I adore) and general coordination. His flapping hands on rarely flares up and that's when he got super excited or very tired. Occasionally he would also clench his jaw or hands when under the same circumstances and had started running his face on his mum's hair a lot.

It took another year for that to go through and after a series of sessions they again said the same ruddy thing... They also said that he was able to, at that point, interact perfectly well with the world. Autism is not so much about the conditions they told us, but more about what impact it had and as he was happy and so far unimpeded they weren't hugely concerned.

What they wanted to do was observe him for at least a while term at nursery but then covid hit in earnest and that went out the window. He's now at reception (waah) and the plan is to see how he does. So far so good though. He is awful at relaying what happened in his days but I put some of that to being a boy and rubbish at that sort of thing.

For those worried though he's definitely improved in many ways. His eye contact, whilst still not great, is loads better. His speech has improved, it's probably not at the level of other kids his age but I think the pandemic has played it's part in that and it's definitely on the right path. His coordination and balance remains that of a one day old drunk deer..on ice. I have my worries (as always) but I try not to let them show to him ever. I'm hoping a proper run at school where things are almost normal will help him, and other kids, no end. I'll update this once we finally get a proper term review. Basically he's tricksy!

Sorry if this reads badly or if there are typos but doing it quickly on my phone.

Popping13 · 07/10/2021 10:41

@AlwaysVacantmkii
Thank you so much for replying. It is such a stressful time for us all, to not know what the future holds, and especially when it's concerning your child.
I'm glad you've been able to help professional advice and that he is developing and catching up. I'm sure one day it will almost be a joke that autism was even considered.

We went through regression, and are sllloooowwwly bringing words back. It's slow but it is progress.
I've also done the MChat test and like you said, it's missing the sometimes option.

I hope everything is going well still?

Mas05 · 11/04/2022 19:33

@AlwaysVacantmkii can you please update on your son?

AlwaysVacantmkii · 11/04/2022 21:44

TBH it's mixed, as always!

At home I swear we have days where you'd not think there was a thing "different" about him. Then you get a busy day at school and he comes home tired and the symptoms flare up. School have spoken with the autism team but we've not heard what the report is yet. We have, however, had 2 parents evenings and they love him, their little helper robot they call him (in a nice way). Apparently he's super well behaved and whilst v quiet at the beginning is starting to interact with everyone in class now. In some ways he's behind his peers but his reading in particular has come on light years. His writing and maths needs work but he's 5 and the difference since starting school is amazing, they certainly have no worries there.

He's had a couple of days when it all got a bit too much and went to a quiet room for a bit. He also couldn't eat lunch in the big hall as it was too loud so they took him and another couple of kids to a quieter space. Happy days though as recently he asked if he could rejoin the big area again so that's huge for him.

Many of his symptoms are obvious to those who know what to look for but many have definitely improved. The others currently don't impede his normal life if that makes sense. My only real concern for him is friendship. He is so desperate to make friends with his class mates but doesn't know how. He is fiercely into trains and expects everyone else to share that love. He also doesn't know about spacial awareness, letting others talk first or showing any interest in their likes/dislikes! I find it cute but the average 5 year old doesn't understand or have the patience. His over-excitement tends to lead to flapping hands, jumping and that just exacerbates everything. It honestly breaks my heart but I'm hoping like with so many of his other symptoms it'll improve over time. In the meantime he's got us and an overly affectionate baby brother haha!

I'm infuriated as I'm sure countless others have been how long the process takes. My wife is almost at the stage where she doesn't care what the result is now but I'd still like to know. Maybe by 2039 we'll know!

All the best everyone else going through this x

AlwaysVacantmkii · 22/07/2022 14:55

On the off chance anyone is reading/following this we have finally received out assessment, a mere 3 1/2 years in the making. The official verdict is that he is high functioning autistic level 1. He'll continue in his current set up at main stream school and they've already but in little adjustments to help him in his day to day life there.

Popping13 · 22/07/2022 21:17

Hello!
Thank you very much for the update and I'm glad to hear that you're worries now have an answer!
Please do keep up posted periodically, if possible.
We are still fighting to be heard.

How old would he be now, if I may ask?

AlwaysVacantmkii · 23/07/2022 12:34

Hi Popping. He'll be six in a few months so one of the oldest in reception. TBH the extra year probably helped him no end with school. He's actually doing very well there and had a perfect report card for all aspects of school so the verdict was a bit of a shock.

Basically it turns out his teachers make quite a few adjustments in his day to day life to help him which is fantastic as it obviously works, I just wish we'd been kept across it so we could help out at home.

Their main concern is his social development with his peers as with adults he's fine. He just seems to miss all the social cues in school and consequently doesn't have friends as such. I think he'd desperately like some, he just doesn't understand how to go about it. The kids are really nice and friendly so there's always hope!

We're going down a speech and language course involving Lego to help him develop these skills and tbh I'm a bit jealous 😂

Chrissayeth · 31/12/2022 12:46

Any updates @AlwaysVacant my son is similar. He's 22 months and makes eye contact with me when we're reading a story and he like asks me a question...in his babble, usually wants me to tell him the names of numbers as he's fascinated (another red flag) but when I bring him close to me he turns his head and looks away. Would be helpful to know if you got a diagnosis or not? Thanks

Lolalane · 03/01/2023 22:11

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