16 month old not pointing, waving or talking - worried

[catski]

So, I've been reading that pointing/waving are pretty important developmental milestones and can be red flag for autism. My son does neither at 16 months.

He also doesn't say anything yet (there's a lot of babble coming from him but nothing that resembles a word, or even an attempt of a word. He says "babmm" a lot - no idea what that mean, if anything!). However, we live in sweden and his father is swedish so he has two language systems to work out.

He walked fairly early - 10 months - and now walks, runs and climbs everywhere. He seems a very active, physical little boy. He seems interested in other children. He turns round most of the time when you call his name (but sometimes doesn't). He likes to come for cuddles. He seems a pretty laid back type - doesn't have any real meltdowns, isn't really phased by changes in his routine.

However, there doesn't seem to be much in the way of purposeful communication from him. I tried the pointing at something and seeing if he followed the point this morning - nada. He doesn't really bring me anything to show me (although very occasionally seems to do so) and I can't detect anything in the way of pretend play yet. Is the pointing/waving something you have to teach them, or should it come automatically? We're not really a family of pointers/wavers although I do point at pictures in books when we read them (he very much likes books).

Should I be worried? I'm thinking about making an appointment with the hv on monday, but maybe I should wait until 18 months if he is still the same???? I am so worried. Any advice would be greatly appreciated.

!6 months is quite young in developmental terms but if you are worried about some of the areas of development - such as pervasive failure to follow an adult's point. This failure can be more indicative of ASD as many autistic children point very well for their own purposes and for their own agenda. How would he react if you pretended something amazing/surprising was about to happen? Would he 'catch' your enthusiasm?

The professor who diagnosed my son is Swedish and is mainly based at Gothenburg University. I have no idea if he does consultations for worried parents in Sweden but he did for us - He is also a visiting professor to Yorkhill Hospital in Glasgow. He is one of the world's leading experts in autism and he cannot give you the answer at this stage, I don't think anyone else could. He even told us our then 6 month old son was not autistic and he isn't.

Hi cyberseraphim - interesting about whether my son would 'catch' the enthusiasm - when his dad comes home from work I do the whole "Ooh! Who's that? Who's that???!" and he seems to get excited but I don't know if that's because he can hear his dad in the hallway as well...

Was the professor who you had a consultation with this guy:
en.wikipedia.org/wiki/Christopher_Gillberg

If so, did you manage to get a consultation with him privately, or was it a referral through the NHS? We are actually just outside of gothenburg, so not in the gothenburg catchment area, but it would be great if he did private consultations, as I don't think we would get a referral to him through the swedish national heath system.

I do remember another early sign with ds1 was that we would say "oooh look' and point at something interesting and ds1 wouldn't even look around to see what it was that we were trying to show him. He was good -although he did it without pointing- at showing us things that interested him (tiny specks of plane in the distance mainly) but he didn't really have any interest in finding out what we were excited about.

The fact that he's getting excited at all is a good sign I would think. From what you say, it looks as if some indicators are potentially worrying whilst others are not but that's not unusual for such a young child. The consultation with Professor Gillberg was within the NHS who employ him as a visiting professor and we were incredibly lucky to get the chance to see him. DS2 was 9 months, not 6 months (number upside down!) but what he did was just to check that he could answer to his name from behind and to check that he could shift eye contact appropriately - 'Look at Mummy' 'Look at Daddy' and that he would copy an action if prompted.

JimJam, I just looked on your website and had a look at the Chat test. My son was definitely given that test in Ireland when he was 18 months old. He did not pass it, and was recalled at 19 months. He still did not pass it. That is when he was suddenly referred to child psychologists, paeds, OTs, SALTs! If I'd known at the time that he failed a test to screen for autism, I'd have been upset. But nobody told me that. They just kept saying things like, we'll follow that up, we'll refer him, we'll keep an eye on that.

I had the opposite problem. I knew that ds1 failed the CHAT test but no-one would take me seriously and said stuff like 'oh but he's too affectionate' or 'he's making good eye contact'.

It is only a screen - not a test but if you want to push for referrals it can help. DS1 'had an eye' kept on him for almost 2 years. We just couldn't get the referral to the paediatrician. It was too long and I now see it as completely wasted time. I often wonder whether things would have been different had we got in earlier.

Well, I just took the M-CHAT, and I think that my son failed five items, and failed 3 critical items.

Having said that, I'm unsure about some of the items he failed - the pretend play and bringing something to show you questions. He sometimes does bring things over - but more to give me rather than 'show' me. Is giving/showing the same thing? I don't know.

Re the pretend play - I went out and bought a cheap tea set today. Not that the wee lad has ever really had much experience with a teapot - we don't use teapots much in this house! However, after I played with it a bit and showed him what to do he was quite happy to come and fill our mugs from his teapot when asked (although not the little tea cups which came with the set), but I'm not sure if he'd do it of his on volition, if you see what I mean. Although, he's only had the teapot for a couple of hours!

I guess another thing to bear in mind that the M-CHAT is stated to be for children between 16 and 30 months, and my son is only 16 months and three days, so he's still pretty young.

He definitely does understand what we say to him. If I ask him for a cuddle, he will come and give me one. I asked him to give tombliboo a cuddle today, and he did so. Then when I later told my husband that our son had given tombliboo a cuddle, he went and picked tombliboo up and gave him another cuddle (my son, not my husband that is!).

Having said all of that, even if he did pass the pretend play and bringing things to show me sections, he'd still fail the test overall as he still has two 'critical' fails (not pointing to indicate interest and not following a point).

Wow, that was a lot of typing! Is anyone still awake?! Sorry for all the drivel, sometimes it just helps to clarify things in my mind by writing it all down.

That's awful to hear jimjams, although doing what you're doing - channeling your energies into the present and how you can help your son in the future is clearly the best thing. Your son is lucky to have someone as aware and sensitive as you.

What happened with your son pookiepodge?

The pretend play stuff sounds good! As does the tombliboo things. I don't think ds1 would have done either at 16 months.

You are right- he is very young. DS3 (who is fine) passed everything on the M-CHAT except pointing and following a point at 16 months and he is absolutely fine now.

I find the sharing thing hard to judge because ds1 did it anyway! He's never really been 'in his own world' ds1- he's very connected to us all - he was when he was tiny and he is now (aged 9). Despite being severely autistic he doesn't stop showing me stuff that interests him (to the point where it drives me mad as I don't know what he's saying so he gets cross). I suppose we saw it around other children- if they approached him to show him something he would act as if they weren't there. He was never like that with us.

If I was in your shoes (and I was with ds3). I would set myself the 18 month target - so 'if he's not pointing by 18 months I will refer'. This means you can have some breathing space for a few months. Once ds3 started pointing at 16 and a half moths he didn't stop and my worries disappeared pretty quickly.

I think the 18 month benchmark is sound advice jimjams. However, if I do lots of pointing, and pouring of imaginary cups of tea in the next two months, is that cheating? I feel like it might be hothousing my son and therefore not a true reflection of his development.

I guess it's just because we haven't done much in the way of that before that it feels a bit unnatural (we've been more into building blocks and shape sorters than pointing and waving).

You shouldn't have to coach it. But tbh it's the sort of thing that if there's a problem won't come in 2 weeks from coaching. Have a look at the Floortime videos- it's not coaching in that way - far more natural.

How's your ds been at learning other stuff? For example when ds1 was 18 months I had to teach him to drink out of a beaker by standing behind him and holding his hands, hand over hand onto the beaker handles, then tip and pour. It was only when ds2 was 6 months old and picked up his beaker and drank out of it (or tried to) that I realised it wasn't normal to have to teach that sort of stuff. I had to teach ds1 everything hand over hand until he was 7 and learned to imitate. Weirdly he could do song actions, but I think I must have modeled them hand over hand or by moving his body through the moves. I just didn't realise what I was doing.

Well, we have arranged an appointment with our health visitor and a paediatrician tomorrow. They only had a 20 minute slot and the paediatrician isn't a developmental or ASD specialist but it's a start. They also asked me to bring the M-CHAT test and results with us and we will discuss my concerns.

Jimjams - I think he seems fairly ok with learning other stuff. Not particularly advanced, but has shown his own initiative on some things.

Good luck catski. The system does sound waaay better in Sweden- which has the advantage that you don't have to play some sort of political clever game (by which I mean you don't have to think 'oh if I refer now then in a year's time I can either get my referral come through and use it if I'm worried or cancel it if it's all OK').

Catski, only last week my son was given that M-chat test. He is nearly 3 now though. He passed it apart from a few questions, such as does he mimic facial expressions. I had to say, 'eh, nope,don't think so' to that one. So I felt pleased at the end of the test and couldn't understand why they weren't beaming at me.

What you have said about that test being for 16months to 30 months makes their reactions fall in to place now.

As he is 34 months old. A few times when I said "yes, he can do that", they said "could he do that six months ago?".

I came out thinking, phew, he passed, so he's definitely not autistic, and a bit confused as to why they were still following up referals to a child psychologist and an OT and a paediatrician as well! He's had one block of SALT, and it went fairly well. He enjoyed playing! still only 5 words at nearly 3 though. I'm rambling here. I thought that his problem was just delayed speech. So I had to admit I was a bit surprised when he was refered off left right and centre.

I finally have dates for some of his referals, psych and paed in November.

Will they be able to categorically say what's wrong with him??

My mother refuses to believe there is anything wrong with him. "ah sure he has his own agenda" "he's just absorbed in what he's doing right now" and "he'll speak when he's ready".

And I 90% believe that too. Just occassionally something penetrates my forcefield for a moment. But he does play with other chlidren, and enjoys doing so. He is affectionate. OK, so 5 words at nearly three is a severe speech delay, but my aunt swears that her sons were the same.

I worry more some days than other days.

I'm glad you've got an appointment so quickly. Things do move fast in Sweden ! Any good paeditrician, even if not ASD expert, will be able to give a better understanding of whether there are any underlying problems. Anyone used to young children will get a 'sense'. I took my NT son to be photographed last week and he was able to do all sorts of things that my ASD son could never have done at 21 months - He understood and responded to all instructions, 'build a tower', 'sit in the chair', 'cuddle teddy' etc etc and he did cute things like saying hello and bye bye to all the props. I was very struck by the differences but the photographer was not in the least impressed because DS2 was only doing what any normal toddler can do and he sees loads of them every day. Anyone who regularly sees young children can spot subtle but important differences.

That is interesting. There's no way my son would do what a photographer asked him to do. The notion of doing something because somebody (and a stranger) has asked him to do it... well, he'd struggle with that I guess.

But when he's just tearing around with other children he can appear completely fine.

I hope I get answers in November.

I wouldn't rush to say any child is ASD because of non compliance to a photographer's or anyone's instructions. A normal child might be very un cooperative or defiant - but would have a reaction. My ASD son at that age would just have appeared oblivious to the fact that anyone had suggested anything.

Sorry to hijack a second, but have posted in SN but this is such a similar topic and seems to be where the conversation is at! So is the pointing (or lack of) one of the true early key indicators of being at risk of ASD? And if a child is pointing constantly for interest, to request items, and at my request ie showing me the light, clock etc at 12 months old can it be assumed that he's ok for the moment?

It sounds very normal - Does he follow your point as well? My ASD son was and is very good at pointing for his own agenda and to share his interests. But I don't think you have much to worry about.

Yes, he does usually follow my point. Occasionally not, if he's distracted but I think he's been following a point since about 9 mths, certainly well before he made a point himself. But then DS1 (HFA I think) has always followed points really well, it was just making them he struggled with!
Isn't it all complicated? i sometimes wonder what occupied my thoughts before ASD concerns came along!

Meant to say, in response to earlier post, am midway through the uni of sunderland urine testing process, the cost is now £60 plus they send you a really good booklet explaining it all which they ask for £4 donation for. Hope this helps!

Hijack away kt14! Sorry I have no experience to comment on your DS, but he sounds like quite a genius to me!

I hope you get some conclusive news soon pookiepodge - it's such a worry isn't it. If only they could just give them a blood test which would confirm yes or no and then we could get on.

We're just back from the paediatrician's appointment. It was only a short one but he listened to my concerns. He agreed that the lack of pointing or following a point can be a sign, but we agreed that it's still early and we will go back in two months time to review the situation. Pretty much as I thought. The only thing that worried me was he said they 'can't really diagnose until they're three or four'. Is that really the case? I would imagine by that point a lot of valuable time would have been lost, so if things don't improve, would you keep pushing for an earlier diagnosis?

He said it was very good that my son likes playing peekaboo and we must keep playing games like that with him. He also said (as you guys also have) to resist the urge to 'teach' him to point - I'm glad my husband was with us because he has been very teach-y over the last couple of days so it's good that he heard it from the doc himself.

He also suggested encouraging a comforter/lovey kind of thing that he can take to bed and become attached to as that can encourage them to form relationships and even talk (as they talk to them). We're going try to encourage this with his tombliboo, following on from all the kissing the other day.

So, up shot is that we will see how things develop over the next couple of months and I will keep my eye out for any other signs. If there is no improvement I will insist on a thorough evaluation. In the meantime I think I will get his urine tested at Sunderland, even if it's a case of ruling any problems in that area out (he's never shown any other indications such as food allergies, bowel problems, ear infections etc).

Thanks for all the information and support you've given me on this thread - it really has been invaluable.

I think there's always some relief from making the first visit and knowing there's someone on side as well. The plant sounds sensible.

They can definitely diagnose before age 3 or 4 though. I have met children diagnosed at 2, and ds1 was in the process at 2. BUt I think a diagnostic approach isn't always the best- it's necessary for accessing state services, but for therapies and interventions a functional approach is best (ie just looking at what the child is doing and not doing, rather than worrying about categorising that). If you take that approach then a diagnosis becomes less important (unless lack of it stops you accessing the functional therapy in the first place - which it could do if it was state provided).

Catski, well done for making this appointment, it sounds like you saw a sensible paediatrician. I hope this will give you some relief for now, and something a bit more concrete to work on.

I'm not sure about diagnosing at age 3/4. A friend has a son with an ASD (moderate) who was diagnosed at just over 2. From what I gather from her this was at the slightly earlier stage than others but not significantly so. Perhaps it's different in Sweden. But in any case, you already have the ball rolling with a follow-up appt in a couple of months, so if there are concerns then you will have 'got in' pretty early which is great.

I hope things go well for you over the next 2 months.

Right, there's been some definite pointing this morning, but I'm not sure if it's 'normal' or if I've been coaching/modelling too much.

We've been looking at one of his picture books over the last couple of weeks and I've been asking him where various object are, and then (usually when he looks at the object) pointing it out to him. This morning when I asked him where the ball/baby/car was, he actually pointed at them! He points mainly with his right index finger, but sometimes with his whole hand, and sometimes with the middle finger of his left hand.

There's still no 'spontaneous' pointing, if you see what I mean - none of the "look!" and pointing in general. Only pointing at stuff in the book, when asked.

I'd really appreciate your thoughts on this - are we still a cause for concern? I feel like had we not been looking at the book then there would still be no pointing at all, so I guess we are....