Can I ask parents of children with autism whether you noticed anything as early as 6mths? (4th child and I know things aren't right)

[lovingthecoast]

Hi. I'm very worried about DS2 (DC4) who is just short of 6mths. Quick background is that DS1 was 'quirky' (still is) and after a chance mention on here about how worried I was about his behaviour when he ate carbs/gluten, I was pointed in the direction of the ARU at Sunderland and it turns out DS1 has leaky gut. Removing gluten and switching to goats milk was literally like lifting the curtain on his brain. Thankfully all this happened around his first birthday and although he still occasionally displays traits I think we stopped something more serious in its tracks. 2 DDs followed neither of whom have ever displayed any traits or issues with gluten or milk.

So, back to DS2. Lots of things don't seem quite right so if I list, I'd be grateful if anyone can comment or remembers their DCs at the same age.

Neocate. I remember it well. Evil smelling stuff. My DD had it for GERD and it was fed through her g-tube.

All the milks

relactation

Loving has ds developed the coordination to put things in his mouth?

How is he when you put him down on his tummy?

If you about to wean, I strongly recommend 'baby led weaning' by Gill Rapley. She covers a lot about weaning and communication (if I remember right).

Two books that I have found helpful (albeit for an older child) are 'the out of sync child' kranowitz and 'the well balanced child' Blythe.

Thanks for the links, Maria!
Oodles, Maybe I have just assumed he should be able to put stuff in his mouth by now. Shouldn't most 6mth old have the co-ordination to do that? He hates tummy time with a passion and never supports himself with his hands, rather just balances on his tummy with his hands sort of listless beside him.

I did baby led weaning with both my girls very successfully so had planned to do the same with DS2. However, I may consider some spoon feeding just to see if he 'gets' the concept of feeding himself. I'm starting to get very nervous about tomorrow.

I certainly think it's worth looking into ABA now, and you can definitely start a suitably tailored programme from around a year old. The youngest I've heard of personally is 15 months (actually the child turned out not to have asd but I wonder if starting ABA so early changed his developmental path? )

In the meantime there are things you can do to help encourage communication and interaction - as someone said, simple things like using whatever he finds most fun (like playing with your hair). So, eg

when he is interacting with you, making eye contact, reaching for something, or doing what you want him to be doing in terms of normal development, make your reaction over-the-top fun, and give him an instant reward of whatever he likes most (eg food/playing with hair/tickle). The message is that by responding so positively, you are reinforcing the behaviour you want to encourage.

Also, talk talk talk all the time, but in very very simple language. Show him everything you are doing, and use one or two word labels. eg when making food, give him the carrot, put his hand on it and say "carrot" clearly. Try not to use superfluous words.

I'd start with the playing thing first though. The key thing is to try and teach him that he gets more from doing something with you than from entering into his own little world.

But please try and enjoy him too - all of us here know that dreadful niggling feeling that something's not right, it prevents you being truly happy about your baby, but also in terrible denial. It sucks, but all you can do now is do whatever you can to prevent/minimise any difficulties - and remember that there is no certainty at all that he will have asd anyway!

Yes he probably should have the coordination to pick up and mouth things. I was wondering whether there's some physiological problem that's holding him back in other areas. If it is physiological the NHS is generally better at that sort of thing.
I hope they take you seriously tomorrow.

Loving, yes def how they explore the world. Ds is 8 now and still nothing goes in his mouth ie food, toothbrush etc. Although other ASD children can be the opposite and everything goes in their mouth. OT explained this as the difference between being over sensitive and under sensitive.

Good luck today.

Hi everyone, just updating as we saw the GP today. She was actually a lot less dismissive than I expected. She said the struggling to feed was anecdotal and she'd heard it often with regards ASD but it wasn't indicitive as there could be many reasons. However, she did agree that he should be reaching out more and mouthing things. She said this could indicate a developmental problem but that it could just as easily be physiological as neurological. She checked the tone in his arms and said it was slightly weak but not enough to be classed as a problem.

She wants us to get his vision checked as she doesn't think he's tracking properly. I expected her to say take him to the optician but she is referring me to a clinic at the hospital to get that checked.

The smiling thing was something she didn't see as a problem at all but then he was smiling the whole time we were there. She said smiling was a good sign but didn't seem to see what I was saying about the way he smiles.

She admitted she'd never heard of the research connecting how they roll with autism. She said if it was conclusive then everyone would know about it and that rolling in itself was a good sign as it means they are interested in getting to places.

She didn't seem to know anything about the Sunderland test and didn't seem convinced that leaky gut exists but said she was open minded on that as she knew that many children with ASD improved on a GF/CF diet even though she said there is no science to back it up.

She ended up saying that she thought things were fine but to keep an eye on him and see how the vision test goes. She wants to check the tone in his arms again at 9mths and she said to bring him back if, when I wean him over the next couple of weeks, he seems to have difficulty swallowing. She told me that even if it was ASD that nobody could tell at 6mths and even if they could there is very little you could do at this stage so to go off and enjoy his babyhood.

So all in all a better response than I expected but she seemed to be more concerned as to whether it was a physical issue. So I will take him to have his vision checked (not sure what will happen there, does anyone have experience of vision checking at 6mths?) and I will take him back in 3mths for her to check the tone in his arms again. Maybe by then I will know more with regards his interaction. Hopefully there will be some copying and joint attention by then and if not at least I can tell her that.

Not sure I helped my case by crying when I started to talk about it and explain how different he was to my others as she then started to talk about PND and whether I was down and did I have family support. I had to say that I wasn't obsessing about stuff that wasn't there and that I have genuine concerns that he isn't doing the things he should be.

So thank you everyone for being so supportive and telling me about your DCs. I'm not convinced it is physical and I'm not prpared to wait until he's 3 for any intervention but happy to do as she advises for now and follow the ideas suggested on here about how to guide my interactions with him.

Sorry that's so long!
Should have said that she also said the lack of reaching/mouthing could also be nothing other that him being a bit late to do those things.

Hi loving,
I don't know if I should say what is on my mind, I don't want to stress you, but this waiting game really gets me. On one hand I am glad she listened to you, but on the other she is doing exactly the same thing they did to me at 6 months (come back at 9 months and we shall see, then it will be lets wait another 4 months to see, after the four months it will be lets put you on a 16 week waiting list for therapy).

Babies respond well to early intervention, I would try and get him on an OT waiting list.
Good luck.

Glad that she didn't just dismiss you, and it does sound like she did take your concerns seriously.

I think it's to be expected that she'd focus more on the physical side of development - she's a GP with presumably no specialism in developmental disorders, so any physical delays are the part of development where it is (generally) more easy to spot problems early, and where there's generally less of a grey area than developmental problems that are neurological at root. It's only when these things start manifesting unambiguously as behavioural difficulties that a dx of eg ASD can be made. Even then it's a descriptive term, rather than something testable iyswim.

Also very glad to hear you were firm with her that this is not down to PND!! FFS.

The vision thing's interesting - tracking can be a problem in ASD actually. Have no idea why (maybe someone else does?) but I have certainly read about it as being a commonly seen characteristic, and it's something that is included in some ASD-led developmental charts. We had an assessment once at BIBIC which also included testing for tracking.

Anyway. So you're not really any better informed, but at least you are one foot on the ladder of the 'system'.

And while of course I hope it turns out to not to be ASD, if it does, by god you are way ahead of the pack! I and probably everyone else here with ASD children would give anything to have recognised it at such a young age - early recognition and intervention is the best possible thing, so you could not do any more for ds than starting to help him this early. Gf/cf diet, OT input, SALT input (if needed), and (imvho) ABA and other forms of therapy (also look at Floortime/RDI) - you can start all these things which will give him the best possible chance of the best outcome.

In the meantime here's some anyway.

The only difference I noticed with DS before 6mnths old in comparison with my friends nt children is that DS slept all through the night far quicker than my friends babies, slept more in general, would stare at coloured flashing decorative lights for longer (and still does this) and seemed to be a far easier, quieter baby. I've only had 1 DS though so I'm not sure if there are other differences I wouldn't have noticed IYSWIM.

Thanks everyone! She could well be correct about it being physical so I will happily wait and see her again at 9mths. However, I'm not sure that would account for his lack of varied sounds and how passive he is.
I won't be waiting until he's 2yrs. I'll keep him GF/CF and give him the infant probiotics. I'll also try to engage him with simple phrases and not bombard him. I'll look at Floortime and RDI and I may be able to do some of that now. If my fears do become realised and there's no pointing or any kind of shared attention by 15mths then we will start ABA.
Bialy, I hope I haven't upset or offended people by posting that Ive noticed stuff this early. Please believe me that this thread is in no way boastful. He's my 4th so I noticed and I'm lucky to have done so, I know, and also very grateful to everyone on here for sharing even if their posts do often corrolate with my worries.And of course, I hope to be wrong and if not I hope that picking it up early will somehow make a difference to the overall outcome. You and everyone else have been so helpful, thank you.

Oh god you haven't offended at all! I just think it's brilliant (under the circumstances, obviously!) that you have spotted a possible problem so early as you can really do so much to help and change the developmental pathway. You didn't sound in any way boastful or anything, that never crossed my mind - you just sound like a very clued-up and proactive mum

Thank you. The last thing I'd want to do is cause offense when everyone has been so helpful. I will try and post back in 3mths time when we've seen her again.

Hi loving, I'm wondering how well your DS responds to your calling him by name? I didn't notice much signs in my DS at six months (he's my only) but I remember feeling concerned that he didn't look round when I said his name. I put it down to other factors (I frequently called him pet names instead, for example) but since he didn't seem to show any other potentially worrying traits, it didn't bother me enough to mention it to HCPs.

Long shot I know ☺️ update please ?