Worried about autism when everyone else isn’t.

[Originalswaddler112]

Hi everyone !

This amazing community has helped me so much in the past and am here now for a personal query. I am well prepared and will not be offended if you all think I’m wrong.

My son is currently 2 and have had concerns for a few months.

He doesn’t respond to his name a lot and eye contact can be very fleeting. It’s great with his mum and dad if they are playing with him, singing to him, reading to him etc.

He will initially give other people eye contact and a smile then not really give it to them again and ignore them the rest of the time they’re there, unless for example if Anna comes on the TV from frozen and he runs around excited and looks to the person also watching the TV.

He has glue ear confirmed and seeing an audiologist - but I think there could be more.

He is 26 months now, doesn’t say mama but makes animal noises, if we say ready steady .... he says go. Can say ball, horse, star etc. Couple of one syllable words.

Nursery have no concerns about him and the health visitor was out last week and kept trying to call his name and he ignored her. But she said it was because she was a stranger to him and that he was busy. He made eye contact with her when she came to the door and smiled at her but never made it again. She wasn’t concerned because when we said the opening line in his favourite book he looked immediately.

He can follow commands. Can put things in the bin, can go get his shoes. Knows who to hug when you tell him. Points to stuff in books and says it. When he gets to certain animals he looks at his dad and waits for him to make the noises.

But he barely acknowledges adults. Ignores them but can play with other kids. A kid walked past him last night and they smiled at each other and gave them a high five. He points to the moon when he gets out. Waves only sometimes and claps only sometimes.

Doesn’t stim apart from running around in circles the very odd time.

But not answering his name and the lack of eye contact with strangers is really worrying me. Should I be concerned or should i just listen to the professionals? I am a worrier but I don’t want anyone taking that into consideration when reading this.

I think everything you say could be down to having glue ear and his age, that said I think glue ear is particularly common in children with ASD, mine had it too. I wouldn't be concerned from all the things you've said though and worrying about something isn't going to help it. If he does have ASD it will become more obvious as he gets older (mine wasn't diagnosed until secondary school) and if he doesn't then it won't. For now just enjoy him for him and see what happens as he gets older, you knowing or not knowing right now won't change anything and I really doubt he'd get a diagnosis based on what you've said.

I appreciate the reply - how is your son ?

Ds had glue ear badly and I was told that often glue ear behaviour mimics ASD behaviour.

Now ds is 14yo and has got ASD, (diagnosed last year) but he had a lot more signs at 2yo (and even so it was only in the teens that it became more obvious).

How is he now?

What were the signs if you don’t mind me asking

Totally not what you're asking OP but did you know that if he has glue ear you can join the National Deaf Children's Society at no cost? They may be able to talk to you about your concerns

Thanks for that

I also want to add ....

We have videos of him answering to his name when he was 17/18 months and 12 months

If you think he's actually losing skills, have you done the MChat Test? Although I don't know how much glue ear would affect the outcome.

He hasn’t regressed elsewhere - integration and speech getting better a bit.

Mchat shows score of 3/20

Sorry, I must have misunderstood. I thought you meant you'd filmed him previously doing something he doesn't know.

Apologies, I've got a stinking headache

No It’s fine ! That is sort of what I said you’re right

@Originalswaddler112

How is he now?

What were the signs if you don’t mind me asking

Firstly: Glue ear comes and goes, so he may have been hearing better when you took the videos. Ds had his hearing tested regularly. In August he was normal, but October he has about 10% of normal hearing.

Glue Ear Symptoms for ds:
The lack of response definitely, although it did come and go, so I'd think he really isn't hearing well, and then he'd hear something I thought he wouldn't. Apparently it can be certain sounds they can hear better, or less background noise etc.
He wanted to be carried, so his ear was near my mouth and he also used to turn my face towards him. One day at ENT they pointed out that he was turning my face so he could lip read. (he could lip read very well. You wouldn't believe the number of people, pre-masks, who mouth their PIN numbers as they put them in. That was one of his specialities )
He was very visual. I remember when he was very small (younger than 3yo) and he came downstairs in the middle of the night and logged into the computer - with a password something like "hSket856!" which he'd learnt by watching us type in. (attention to detail like this can also be ASD)
He also started using subtitles from an early age and taught himself to read a certain amount from this. He also tended to put the volume up of things he watched as his hearing went down.
He hated loud noises-he's got a damaged muscle in his ear which doesn't dampen the ear drum properly so a loud noise can be physically painful for him.
He also complained about the "large fridge"-which turned out to be ringing in the ears.
If someone came up behind he would often lash out-because they made him jump as he didn't hear them. (can also be ASD)

Things that may have pointed to ASD at that age:
He had sensory issues. Sand was the big one. He still (aged 14yo) avoids sand when possible. He does cope on the beach just about, but takes time to wind up to it.
Hates change. Even change he knows is coming.
He did stim-flapping his hand. However this is still normal up to about age 5yo. He grew out of it late, but was still in normal range.
Loved wheels (but so do other children!)

What triggered me going to ask for a diagnoses, was actually ADHD. He'd always been the wriggly one in school assemblies etc, but kept being told "he's a summer baby; he'll grow out of it".
When he was about 12yo he was going on a small trip with school leaving at 5am. There were about a dozen others, mostly older, but some girls his age. As I watched, the teacher started talking to them and 11 children stood in front listening. Ds bounced all round the edge of the group the entire time.

So I went and asked for a referral for ADHD, and when they assessed him they decided he was more ASD. ADHD followed fairly quickly afterwards!

Advantages of him being diagnosed is mostly that he knows there isn't something "naughty" about him. There is a reason. He did say "great, now I have a reason to be antisocial". But actually he isn't. In some ways he's the most social of my dc, but that's partially he's found his crowd of lovely slightly quirky lads. He's always from age 3yo had friends who aren't too dissimilar from him.
Other advantages is it gives me something to say to the school when he struggles. He has a computer for exams and thinks that is the best thing ever!
It is better that he is diagnosed, however he would have survived okay without it iyswim.
I was told for both he was borderline, but in both cases he just came down on the diagnose side.

What I'd say is I doubt you would get him diagnosed now. And rightly so, because many children are like your ds and are absolutely fine. But file things away-maybe keep a little notebook and write down anything that worries you.
When he gets to preschool/school if you're still worried, mention it to the teachers. They've seen many children, so have more to compare with. Be aware that if he's a summer term boy you may well be told he's normal. So give it a little. Be prepared to push (I went to the GP rather than school in the end and asked to be referred) and it does take time.

But also remember that whatever he is diagnosed with (or not), he's your lovely wonderful little ds. A diagnosis doesn't change that. It only means that others can have some understanding. Love him for who he is with his darling little quirks and special personality.

I hope you forgive me but I genuinely laughed out loud when you said he logged into the computer with that password. Lol!!!! What a rascal.

Your son sounds amazing and so much fun. Sounds like he keeps you entertained all the time. Does he go to an every day school ?

We laughed too (and changed it). Slightly less funny was when he logged into the laptop and changed the password for the admin a couple of months later. Thankfully he remembered what he'd changed it to otherwise we'd have had to do a factory reset. Apparently it "looked better".

He's been at a standard state school all the way up with a few issues occasionally but nothing major and nothing long lasting.
He is a lot of fun, and has his own way of looking at things which can be very funny, although you don't want to get into a debate with him because it can go on for hours!

Good for you guys