Lost and alone. Toddler with ASD red flags. Joint attention not there!

[Lucecita]

I am a bit lost regarding what to do with my daughter. She is 22 months old and shows almost no joint attention. Otherwise she is social, good eye contact, happy, affectionate, not many tantrums and sleeps the night through. She eats well and she likes to play peekaboo, sings a lot and really well. She waves and says bye, and she smiles and babbles all day. She is been raised trilingual and has few words for her age. She attends full time nursery, and they have told me they have not seen any red flags and that she is actually gaining vocabulary (in english), that she is very social, plays along children (no social play yet but this is normal) and she understands and follows instructions.

However, the lack of joint attention together with delayed communication is driving me mad. She's only had two moments of shared attention with us, which happened last week, and in the past weeks has shown me some toys like 3times. She also does some pretend play.

I have done online M-Chat and depending how harsh I am she shows 50% risk. I have done other screening tests and show always low risk. I went to the GP last week and burst into tears because I am convinced she has ASD, probably mild. I felt ridiculous and terrible. He told me however he would try to refer her. I am based in Camden, so does anyone know how it works here? Should I seek a private assessment? They cost a lot money but could make big effort if that would actually help to clarify and easy the process.

Thanks for any advice, I am struggling to keep relaxed about this...

What's joint attention?

Are you in a 'competitive parenting' type of London environment?

She's only had two moments of shared attention with us, which happened last week, and in the past weeks has shown me some toys like 3times.

So she may just be starting to do it. It sounds like you may need to give her a bit more time. Would it be so bad to wait a few months and see how she progresses?

Thanks for coming back to quick. No, not at all, Penny. The worst thing is that until now I have always been very relaxed regarding her developmental milestones, because overall she was happy and healthy. A couple of months ago I started being a bit alert because she would never turn when we called her and she had speech delay. But she was chatty, and she's always singing. Now I realised that her non stopping chatting might be a way of vocal stimming too....

It does sound like for now you just need to try to take a step Back and relax. She is still only young so try not to push her too much

It's good that your GP is trying to get a referral but try not to panic. I know it's easier said than done, but we've been on a similar journey (different symptoms but my DD also has lots of great skills but had some red flags for autism, and ended up getting a diagnosis). I was also very relaxed about milestones and never thought she was autistic until it was confirmed.

She is now 4 and diagnosed but very happy in mainstream pre-school. I'm glad we know so we can support her better but definitely so far it hasn't been terrible or a big deal at all.

In the mean time, maybe look up Walkie Talkie speech therapy on YouTube - I think she has some stuff on joint attention?

As you say, at this age playing "alongside" is pretty normal, so you have time to work on anything else if you need to.

We're in Hackney and here we got seen by paediatricians every 6 months-ish until she got her diagnosis at 4. She was about 3 when they first told us she might be autistic (we'd been seeing them since about 2 because of physical delays and because she wasn't asking for things or pointing).

Our route in was through drop-in SLT - do you have that in Camden too? We felt kind of mad going because she was talking a lot, but they took the not asking for things/not pointing seriously, and together with the fact she'd been seeing physio for late walking it got us into the paediatric service.

In Hackney the SLT service have sessions most days somewhere in the Borough where there is an SLT based at a stay-and-play for a couple of hours and you just put your name down when you arrive and then you can get half an hour with them. Looks like Camden might have something similar if you phone them up?

www.whittington.nhs.uk/default.asp?c=23411
Camden Early Years SLT

This service for pre-school children with delays in talking and communicating.
Hunter Street HC
Kentish Town HC
Gospel Oak HC
Belsize Priory HC

Contact SLT Department at Hunter Street on 020 3317 2366/7 for referral.

When I posted before, I wanted to check what I'd remembered about the bilingualism/speech delay controversy (not now thought to have an effect) and found this post by a speech therapist who specialises in bilingualism.

Turns out one of her comments at the end of the article mentions that although there isn't as much research on trilingualism, it may be connected with 'longer periods of mutism'
bilingualkidspot.com/2017/03/06/speech-delay-bilingual-kids-expert-advice-speech-therapist/

Sounds like something you might want to look into if you hadn't already.

Hi there,

Thanks a lot for replying. It really helps, because I am alone with my partner here in the UK and that also makes me magnify things much more. @pennycarbonara thanks for this, I know I should not fixate on her language delay too much, because I can take longer with her, but its a combination of signs. @LightTripper thanks so much for sharing your experience with me. I have just called SLT at Hunter Street HC and will book an appointment for my daughter for September. I had no idea SLT was self referral or that there were drop in sessions. Also the positive tone of your message really helps me understand that as you say, it wouldn't have to be a big deal at all. And I know I have to take a step back and relax, but the more I read, the more everyone insists that the earlier the diagnosis, the better. Really thank you all

Hi there, I copy from Wikipedia: “Joint attention or shared attention is the shared focus of two individuals on an object. It is achieved when one individual alerts another to an object by means of eye-gazing, pointing or other verbal or non-verbal indications.” It is the basis for social communication and socialization.

She is still quite young and what she is doing sounds encouraging. I can't really see anything that shouts autism to me. I would try to stop worrying and see how things pan out.

My son has autism and wasn't doing half as much as your DD at this age. He was referred to SLT when he was 2.5 and diagnosed with autism at 7.

Hi Ellie,

Thanks for you message. I know I need to relax and give her some time. It’s hard not to panic about our kids when we think something is not quite ok. How is your son doing?

He's ok thanks . He's 23 now and at a fabulous college for students with ASD. He's doing really well and is very happy.

I’m glad to hear he is happy.

Hi there,

Just wanted to give you an update on how things are with my daughter. We had an appointment with SALT last Monday. She said that thought there are a couple of things that could be related to ASD( she said that her play was a a bit too self directed) overall at this stage she didn’t see any reasons to refer her to a multidisciplinary assessment. Her opinion is that she has probably a Developmental language disorder but at this stage it’s difficult to say 100% and needs to see how she responds to therapy. She told us her profile was not a clear cut for serveral reasons. With her being so young and such a spiky profile it’s not possible to know how things will evolve.
The waiting list here is 3 months so we are starting a type of ABA that is used to boos children’s motivation to communicate through language and see how that goes. It’s PRT, and the consultant, after assessing her, told us that she thinks it can help her a lot and be very beneficial as she is very engaging and motivated, and responded well to prompts during the assessment. We are starting next week, so I’ll let you know how it goes.

Thanks a lot for taking the time to respond to me back in July, it was great to hear some comforting words.

Thanks for the update. I'm really glad you got some help! She may well just catch up, especially with the extra support you are giving her - but even if she doesn't the fact that she is very engaging and motivated will be great skills to take her through life xx

Hi hope you are alright xx how’s your daughter now ? ☺️

Hi any updates please ? 🙏