Possible developmental delay at 10 months - next steps?

[puglife15]

Hello. My 10mo is missing some milestones especially around communication which concerns me a little, but he is generally behind across the board. He also has some unusual physical "quirks".

I've looked online at some questionnaires etc but they are seem to be American and talk about seeing your paed about early intervention etc.

Obviously the system here is totally different, and it seems most developmental delays and conditions like ASD (not saying my son has it, but he is showing some markers) aren't diagnosed or even assessed until much much older, like school age.

I wondered if anyone else had success in the UK getting an assessment done at a young age, and/or through doing early intervention therapy etc at home or with professional support. The evidence suggests early intervention pre 3 can make a big difference so if there might be an issue, I don't want to wait and see for too long.

I'd really appreciate any advice from those who have gone through this.

I am not sure what routine assessments are carried out now, but our son was referred for Speech and Language Therapy (SLT) at two and a half because of delayed language development. He subsequently had SLT for many years. Then a routine assessment at age 3 (carried out by the health visitor) showed he had delayed development in a number of areas and this triggered a load of other assessments

He had a Statement of Special Educational Needs at age 4 while he was at nursery school and this went with him to primary school and then secondary school until he left at age 16. This provided extra support in school.

Although we knew he had we suspected autism at age 3, he wasn't diagnosed until he was nearly 8. But that's a whole new story on its own.

Obviously the earlier you flag up concerns the better as if there is a problem, support will be put in place earlier. I would think your first port of call would be your health visitor or GP. They should be able to advise.

Forgot to ask - what are the "unusual physical quirks" you mention?

Thanks SEN. Your story sounds quite similar to others I've heard that it can be a struggle getting to a diagnosis. I've got an appointment with HV soon.

In hindsight would you have done anything differently knowing what you know now? Did you think your son had delays before he was assessed?

Some of the quirks are:

Sitting in really weird positions with legs in different directions or under him

Falling over while sitting, despite sitting well for a number of months

Crawling without putting fingers flat

Going up on his feet rather than moving knees when trying to crawl

Getting arms caught under his body when he tries to roll, seemingly though he's forgotten how to roll from back to front??

Arm flapping and hand twirling

Interesting, my dd was similar but maybe slower physically. Sat at 10 months, but fell often until 18, crawled at 14 in an odd way, plus fists down. Still sits unusually... also used her head as the main support to climb up things.

At 4 she's just like others, bar a few climbing skills a stranger wouldn't cloc k. Slightly low muscle tone

Thanks Rocket, the communication worries me more, not really babbling, and he's responding to his name erratically these days.

Tricky on communication at that age, I don't dd was hugely different to my others (not asd). Maybe more passive in retrospect and more sensitive to everything, constant holding. But my son was very late on communication and attention, and it all came at once at 2.

Has you daughter been diagnosed?

Yes, autism

How's her communication now, have you had much treatment? Was it a struggle to get a diagnosis?

Also hope you don't mind me asking but I'm sure to go back to work soon and stressing about finding childcare for him. He doesn't sleep really except in my arms and even then he's very unsettled. Doesn't really eat either.

Sorry meant to ask, have you used childcare?

No struggle for diagnosis, we were referred from a hospital appt before I was really ready for it and I was quite resistant. Home visit to push it and panel refused my discharge request...

Communication has ups and downs, vocabulary good, but repetitive. Easily over whelmedwith stock answers/comments. Plays at times.

Childcare was hell. Delay and nurseries refused her at 7m, left with friends, then another friend. Gave up work during preschool

Refused on physical and feeding delay, otherwise very very passive. Over subscribed nurseries here and can pick and choose. One to one feeding took too long, risk of others squashing so needed watching, not sitting...

Thanks both. Frusso I'll definitely do that. I think it's more he leans back rather than twists to grab things slightly to his side/behind though.

Rocket same here, childcare massively oversubscribed - why would they take a non napping, non eating, non bottle feeding baby that cries a lot?? plus I feel that one to one specialist attention would benefit him, based on what I've read about early intervention. Unfortunately we can't really afford for me not to work. Not sure how to progress.

What age was diagnosis @Rocket?

Also he has some sensory issues... Doesn't like getting dressed or having things over his head since birth. Screamed like nothing I've heard since the day he was born. Had blood taken recently and didn't bat an eyelid even when they struggled to find a vein. The nurses said that is extremely unusual and almost never happens.

I'm not feeling very good today.

We would have raised concerns as soon as we noticed them which was probably around 12 -18 months. However he was one of three boys all under 5 and we were more concerned at the time with his elder brother (DS2) who had severe language delay, behaviour problems and showed many of the classic signs of autism.
Investigations and assessments with DS2 started around age 3. He was referred to SLT and diagnosed with a severe and complex disorder. He too had a statement of SEN when he was 4.

In your son's case I would certainly be raising concerns now. And if people don't listen or don't do anything keep banging on and making a nuisance of yourself until they do. I was told 20 years ago by a professional that the people who shout the loudest get what they need for their children. It's even more the case now. We have spent the last 18 months fighting for the right provision for DS3.

Feel free to message me if I can be of any more help. Good luck

My ds got his ASD diagnosis at 6yo. I had noticed things since he was a few months old (screaming, terrible sleep, hand flapping at 6mo, didn't eat food until nearly 18mo). Fobbed off though. The first concrete thing anyone listened to was he didn't meet the speech milestones at 2yo. I found it very hard to get anyone to pay attention as he doesn't present in a stereotypical way.

I would say film what you can. Keep a list of concerns. Phone NAS and find out what your local ASD pathway is. Can you self refer to any of the services? Knowledge is power so the more you know about where to go if/when you see more signs the better. Some HVs were rubbish but in the end I saw 2 for pre-school check who really helped and knew their stuff. Professionals take opinions of other professionals more seriously than mum's I have found, so ask for an email/note from anyone who comments about differences. Its about amassing evidence.

In the meantime Hanen More Than Words book (very expensive but ask your local library to do an interlibrary loan for it) will give you lots of ideas to aid communication. Out of Sync Child is good for sensory activities. If your dc is not autistic none of this will do any harm. Only drawback is that by doing work yourself you may cover up the obviousness of a condition to professionals who are only looking for clear cut cases. I suspect this is a contributing factor in my ds taking so long to get noticed.

Professionals take opinions of other professionals more seriously than mum's

This is so true.The Speech & Language Therapist working with our son in school when he was seven had some concerns and asked if she could refer to other professionals. He got his diagnosis about 6 months later. She only said pretty much what we had been saying for years.

3yrs 10m

Thanks everyone. Ekorre that must be very frustrating to feel your efforts set back a diagnosis. That's not something I'd considered.

At the moment he's only a few months behind milestones so difficult to know whether he's just behind and a bit high needs, or there's something else going on. He seems to show some shared attention eg if I look at something and say look he'll look in right direction, but I'm sure his response to his name has got worse.

Is it worth seeing a SALT for a child that isn't likely to be saying words yet anyway? I think I can access one through my local children's centre.

Thing is ultimately you want to help your child so its worth doing whatever you can. There isn't a lot of professional help in many areas so you'll be doing a lot yourself, diagnosis or not. I wrote in the notes I gave professionals that they didn't read what I had been doing.

Yes SALT work with even tiny kids because its about attention, concentration, turn taking in play as much as speech sounds themselves.