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.

I don't think you need to wait. Once you're in the system there'll be plenty of inbuilt delay, so chances of getting any unnecessary diagnosis are almost zero.

Thanks, Maria. I guess I'm just assuming that they will be dismissive even though he's my 4th. I'd love to be taken seriously so I'll go but I do wonder that even if they do take my concerns seriously, I'll still be told to wait and see. Going will probably make me feel better though and provide a record that I had concerns early on.

Not social smiling, unable to learn breast and struggled with bottle, not grabbing stuff, unusual motor development, not making the usual baby sounds.... they'd be brave to ignore you. I googled teitelbaum, he'd fall into an 'alternative medicine' category really.... hard to know if in 20 years his 'early signs' will turn out to have been quackery, or well-observed detail.

Not social smiling, unable to learn breast and struggled with bottle, not grabbing stuff, unusual motor development, not making the usual baby sounds.... they'd be brave to ignore you. I googled teitelbaum, he'd fall into an 'alternative medicine' category really.... hard to know if in 20 years his 'early signs' will turn out to have been quackery, or well-observed detail.

Thanks again Maria! You're right, it's not just one thing but a combination of lots of things that aren't quite right. Hopefully, the GP will listen and advise. I think I'll write down all the issues in case I forget and press home the fact that I know what normal development looks like and this isn't it. Just got to brace myself so as not to cry as I'm feeling quite emotional about it all today.

Just to let everyone know that I've booked an appointment for Mon morning. Thank you for all taking time to talk to me and not making me feel like a neurotic mother. I will update the thread on Monday after we've seen the GP.

Forgot to say DS also got a bit of jaundice - and I have seen research recently that says babies who go on to be dx autism are more likely to have jaundice. Which I think is probably due to being slow off the mark with feeding.

that's really interesting re jaundice- ds was slow to feed (literally no food at all for his first 30 hours as he wouldn't latch on, the midwives were too busy to help me and no-one suggested a bottle. He ended up having one massive bottle and then latching on an hour later and feeding successfully for 6 months oddly) but his jaundice was slow to disappear too. We actually commented on his lovely mediterranean skin colour on day 2! (naive first time parents)

yes definatly... although he was very prem so i expected him to be delayed but it was the lack of interest in anybody or anything that stood out for me as being more than just delay.
ALthough he was 3 months early (28wks)

He didnt smile until he was at least 6 months old
he was only content when left alone, could not be cuddled to sleep or settled by anyone, was happiest just left laying in his pram
showed no interest in toys or reaching for anything, we had to teach him hand over hand to touch & pick up objects even once he was physically able to
I'm sure there is more but its difficult to seperate his developmental delay from what stood out for me as very "different" to ds1
He was later dx with mild CP, autism & learning difficulties

Thank you, Agnes, Shopping and Slacklucy!
Agnes, DS2 didn't have jaundice but both DS1 and DD1 did. However, he did have that strange cold thing as I mentioned earlier. He just couldn't get warm for quite a few hours even after they put him in an incubator.

You just described ds. He struggled with BF, just did not get it, but tried in a half hearted manner, hence leading him to 'failure to thrive', a worrying time.

Very laid back baby, contented baby, did not cry much, not v. determined in much (unlike ds2), did not seem bothered by food (but no food issues), i was feeding v. regularly, slept well, bit floppy.

But wonderful smile (but not necessary with you or to you) and a v. engaging laugh. Loved being held, still does at 6. Seemingly good eye contact, but not so sure it was directly at you, if that makes sense.

But as first, just thought he was laid back till 12months, and his obession with wheels, doors and jigsaws.

DS is HFA, dx at 4.

Sorry, a bit late to this thread.

I thought from DS2 being weeks old that something wasn't "quite right" as he was so different to DS1 (who was advanced in everything, he walked at 9 months). It took me ages for someone to listen. We were refered at 8 months to a Paed for a different reason, DS2 also has plagiocephaly but while there our concerns were dismissed. Ds2 was dxed at 2 1/2 with autism.

Just a few things:
He never cried to be fed, would just lie there awake. Had to guess when he needed fed.
Hated being bathed from day 1
Hated holding anything in his hands (eventually held finger foods at 15 months)
Hated anything on his head
Didn't care who was looking after him
Hated things in his mouth, feeding him was a nightmare. Had to resort to spoon feeding him milk at 6 months as refused a bottle
Developementally he never hit any milestones
Was a very floppy baby, lack of head support and core stability

Theseare just what I can remember off the top of my head.

Good luck with your appointment on Monday, please do not let them brush it under tha carpet.

went on an interesting course a few weeks ago regarding social communication disorders and researchers have found that they can tell within 20 minutes of birth if a child is on the spectrum, i dont know how they do it just it came out with that information x

Yes, ds2was different at that age, but only with the benefit of hindsight, iyswim. He was 'self-sufficient' is the only way I can think to describe it, not demanding. The quality of his babbling was less 'conversational/ responsive'.

And yes, he was smiley, but something I remember being bemused by very early was that we has loads of amazing photos of him looking so, so, engaged and smiley, more than when he was actually looking at a person. Looking back, I think he was much more interested in cameras than people.

Well done for listening to your gut, op. Wish I'd done it sooner, and not felt guilty for comparing him with his brother. Just things like doing gf/cf might well be so significant for him.

At the time i didnt have any real concerns, but looking back with hindsight i would have described ds as a 'good' baby, not demanding at all.

He also would not accept solids

Didnt put anything into his mouth ie toys or fist etc

Didnt like the bath

Didnt seem to need much sleep

The only thing that would make him laugh, was someone making him jump and scaring him, as if he needed something quite extreme to get a reaction from him.

Didnt like his hands or feet to be touched

Distressed by sunlight

Ds was also jaundice when born and spent some time in an incubator naked, under phototherapy. OT later explained away some of his sensitivities due to this.

Thank u to 5inthebed, spiraling, doormat, post and claw.

Interesting you mention about mouthing stuff claw as dh looked out some video footage I forgot we have. It's of ds1's birthday but dd2 is 5mths in the video and she is frantically mouthing everything. At one point she clearly gets annoyed because some octopus thing won't fit in her mouth. I'd completely forgotten how everything goes in their mouth. Ds2 doesn't put anything in his mouth. Mouthing is how they explore, isn't it? Something else to go on the list for the GP tomorrow.
This thread has been so helpful albeit a bit too close to home.

Funny that's the one thing my DS4 did and STILL does! He had a squeeze latex giraffe which he would shove in as far as he could! The amount of toys that I've thrown out because he has crunched them with his "jaws of death" are too many to count!

That's interesting Sally! I know it can be a sign of something not quite right when they get past about 10mths or maybe 1yr but I assumed it was normal and expected at 5/6mths. Certainly my others did it and the girls at least are very NT. guess it just shows how they all present differently and that one thing on its own means nothing. We went for a walk earlier and after we came in he happily lay in the pram for nearly an hour. The others always screamed to be taken out within about 2mins of getting in. He is way too passive.

I noticed a few things that were a bit 'different' about my ds around 6-9 months. He loved looking at lights. He copied noises from machines but late to babble in consonants. I had a general niggle that he just didn't respond to normal social interaction like other babies - eg we had to work that bit harder to get him to laugh & reach out for things.

When he was about 10/11 months I started doing things like rolling balls to him (in the books they say "baby" should be rolling them back to you). He was just blank - no reciprocation at all.

With dd it was such a different story from 6 months on, we knew she didn't have asd, but of course that was in comparison (and with hindsight of course).

I honestly think if this is your fourth child your instincts are probably right that something is up. Well done for being so proactive - I hope the dr will listen to you. But don't be surprised if they send you away with a 'wait and see' approach.

If it continues to be a worry, the best thing you can do is start doing as much as you can yourselves to help promote normal development as early as possible, not wait till you get any 'official' help as this might be years away.

Let us know what happens on Monday.

bialy I completely relate to the comment about having to work that bit harder to get a response. I remember reading the What To Expect book increasingly thinking it was total baby propoganda: all that stuff about adoring gazes, fascination in whatever you're doing, eagerness to join in. Yeah right, i thought... And then i saw all that stuff with dd in a way I rarely did with ds. He's my first so obviously I had nothing to compare to but I always just felt he was quite.. detached I guess. All very subtle stuff, and he seems (at 3) on the mild end of the spectrum so while he is different from his peers now it's not a massive gulf. But, for instance, as a young baby (4 months-ish) his response would change immediately and consistently when BabyTV changed from a cartoon to something involving real kids: he simply wasn't interested in real people. He also hated it as a baby if you tried to direct his hands over textured board books (That's Not My... etc etc) although oddly he loved them later on. And there's always just been the feeling he wasn't into, well, life as much as other babies. I remember NCT friends being so enthusiastic about taking their kids to pretty much any baby group going while I had this weird feeling it was rather wasted on ds. He always used to try to leg it out of singing groups while other little ones were obligingly rowing their boats etc. Good luck for Monday, op.

Oh god those What to Expect books, and the bloody baby singing groups! I used to take ds to one and when the musical instruments would come out he would always choose the same tambourine, week after week - even the girl leading the class commented on it.

How could I have been in such denial?!

Thank you Bialy and WP! Part of me wishes I was in denial just so I could enjoy his babyhood a bit more. Problem is having experienced normal development more than once before it all seems too obvious that something isn't quite right even if it is subtle.

Bialy, you mention doing as much as possible with him now to promote normal development. Any ideas what you can do with a 6mth old? Yesterday I looked on the website of a local ABA provider who will work with children from 16mths who are clearly delayed with or without a diagnosis. So I've already made up my mind that if joint attention and pointing etc hasn't developed by then that's the way to go. Hopefully such early intervention will help. However, I'm at a bit of a loss as to what I could do between now and then other than stay GF/CF.

I'll see what the GP says on Monday. Thank you again everyone for your input.

He loves your hair... let it tickle his face when he's just on the cusp of doing the next 'something'. Eg if he's accidentally making noises, reaching out to bat a toy... the next time wait just a fraction longer or do a tiny bit more

You say he's GFCF... is he on prescribed formula milk? The goat formula stuff isn't suitable for a lot of cows milk allergy dc (I nearly said kids )

Hi Maria! I've changed him to neocate today so he is now dairy free. I'm due to start weaning him within the next week or so and we will be keeping him GF/CF. I'd be interested in doing the Sunderland test with him as DS1 tested positive for leaky gut but I know he has to actually be having gluten and dairy in his diet at the time of the test which I don't want to risk. Having said that, goodness knows what preservatives are in the neocate. It certainly stinks! DS1 always had a problem with additives so maybe standard formula is the lesser of two evils. I'll have another look in the morning.