Would like to hear some of your ASD experiences please - non-controversially!

[snowleopard]

Anyone with a child with ASD - could you answer a few questions for me? I'm very confused by various things said anecdotally, scientifically and by doctors that don't all seem to add up. But I'm really not wanting to start an emotive row or discuss MMR - just would like to know a few things, especially about the pre-dx behaviour of children who were later dx with ASD.

DS is just over 1, we see no great early pointers or behaviour that would indicate anything in particular, but DP is worried as his brother has Asperger's and we are wondering if there's anything we should be looking out for.

If your child/a child you know was later diagnosed with ASD:

• looking back, was there anything that made them seem unusual as a baby?
• or were they totally "normal" and like other babies?
• when did you first suspect anything unusual?
• if you were me what would you be looking out for?
• lastly, I've heard of research that suggests that in children later diagnosed with ASD, the dx can be predicted by their movement patterns in babyhood. I'm not saying I accept or don't accept this - I'm just interested. DS for example does have a lopsided crawl - one of the supposed pointers - but then that could be caused by other things too and he's only just started crawling - so I don't know whether that's a cause for concern.

Thanks if you've read this far and can help!

All 3 of mine were a bit crappy movement wise, but ds1 is the only autistic child. That research is a bit out of date btw, and not necessarily widely accepted (although i think interesting). Current research has failure to respond to name as the main sign at 12 months iirc (or maybe it beagin to increase after 12 months), and then things like lack of pointing by 18 months.

For us the only sign that something was upi was that he failed to develop a point. He would share attention with us (using gaze) but would never point out something of interest using an index fingure. he used my hand to point to things in books, or placed his whole hand over the book.

He was a very simly happy content child- too happy and content. That extreme passivity is common in autism, as is the opposite- being very high maintenance and very difficult.

We've been watching ds3 like a hawk- we were worried about severe autism- it's only in the last few weeks (he's now 18 months) that we've come to the conclusion that he's OK. Early signs are subtle and you can drive yourself mad looking for them.,

Thanks so much Jimjams - that's exactly the sort of thing I meant. Do you think lopsided crawling (one foot, one knee) is quite normal then for first crawling efforts? (DS has always been keen to walk and not so interested in crawling, which might be why he's so late with it.)

I know I could try to just wait and see and not worry, but it's not that easy...

sounds normal to me.

An OT assessing ds1, watched ds2 and said "err does he always try and roll like that". I said yup and she suggested doing some sensory integration with him as well . Actually he is a bit of an "out of synch child" (good book) but not remotely autistic.

snowleopard, I know very little about ASD, but both the ds of a friend (20 months) and my ds (13 months, pretty sure both are NT) did/do the lopsided crawling thing on occasion, after and alongside having crawled 'conventionally' for a while.

[hijack] Jimjams - thanks again for your advice after ds's MMR. He seems fine and hasn't obviously reacted to it at all yet.

Right to rattle through your list:

He could hold his head up at birth, and would scream if anyone excpt me or his brother held him

When at a year old I had nevr heard 'mumumumumumum' yet he was walking and climbing astonishly well but would lay flat toteh ground in places other then home, espcially if anyone tried ot go near him, he was late develpoing nay speachand even when it all disapeared betwee 18 and 28 months of age no one would listen, brushe doff asa phase nad normal till I refused ot leave the GPs office without a referral.
I would look out for everything and anything, it doesn't do any harm to get things looked at and investigated, better to be wrong and know soon thenr right and lose a years intervention becuase you were fobbed off

no pointers on teh crawling, he was fast and adept at it by 7 months

cool FIT.

don't have any knowledge of ASD,but my ds never crawled at all ,he is NT.

same again here hold his head up from birth would scream the place down if i wasnt holding him, no baby babbling, did a lot of rocking as he learnt to sit up, go very rigid when excited,very strange sleep patterns.

suspected it when their was no babbling

make sure their is babbling at an appropriate age, eye contact is usually a big one we had no problem with ds,sleep patterns ds NEVER SLEPT and STILL ISNT!!!

my dd2 has ASD traits

she was an early walker, 10months old, despite being hypertonic.

colour matched at an early age.

recent test scores have placed her at 18months aherad of her age for most things apart from social interaction.

sleep patterns? and they are?

But yes the rigid thing, he Still does that goes siff and a board and wipes at his nose like a mouse.

sleep aptterns? dd2 doesnt sleep, does that count as a pattern?

It counts as much as sleeps sometimes and other nights spends 5 hours humming and trying to play with trains, and thats with melatonin

colour matched. That's a good one. DS1 on his first birthday, sat surrounded by balls, sorted them all into different piles according to colour. We thought we had a genius

Also stopped talking (losing speech is a big one) and began to sing perfectly in tune around 16 months. If he saw a star (say in a book) he would sing twinkel twinkle with perfect pitch.

he still sings. Sings old macdonald when he is cross

we knew there was something different with ds at about 14 months. he was a very contented baby...like jimjams has said, just seemed too happy now that i look back (at the time i just considered myself a bloody great mum for having such a happy child)
he went from sleeping all night to not sleeping at all....overnight. he woke up one morning as normal and from that day on didnt sleep anymore...still doesn't

he would sort his cars into size order biggest to smallest
would open cupboard doors to a specific angle and thenclose them again
wouldn't eat anything without smelling it first

i think his movements were all ok though, which is funny as he has now been DX with gross/fine motor delay

Ds1 was very high-maintenance for the first few months. I remember another mother on the post-natal ward telling me that she'd never heard a baby scream the way ds1 did. He wouldn't feed at all in the hospital and had to be tube-fed (later found out it was because his mouth was hypersensitive). He didn't sleep much at all. If he slept for a total of 6 hours in every 24 then we thought it was a good day. After about 5 or 6 months he was a very happy baby and extremely passive. He didn't babble at all and didn't point. As a first-time mother with no experience of ASD I think the first time I suspected something was wrong was when he was about 15mths old. He'd passed 3 hearing tests but didn't respond to his name or to loud noises.

Ds2 (also ASD) was pretty ordinary as a baby tbh. He loved to watch the washing machine spin, loved circles and the colour red but was much more sociable than ds1. He didn't sleep much but not as badly as ds1. He didn't like loud noises much. I first started to suspect when he was around 10 months old. He didn't babble but then suddenly started pronouncing a few words perfectly. About 2 weeks later those words disappeared. He didn't point and also had the same colour-matching ability that others have mentioned.

WRT crawling, the only unusual thing was that ds1 crawled with his hands bunched up into fists instead of flat on the floor. Ds2's crawling was completely normal.

Fattiemumma's child sounds exactly like my ds2. Not sure about the lopsided crawl being an indicator but dd has that now.

jimjams, before the age of 1, my dd went to my cupboard and matched all the cups with their corract lids. she does puzzles for children 2years older than her, she will sortthings out by colour.

Message withdrawn

looking back, was there anything that made them seem unusual as a baby? Yes, definitely, he was TOO advanced and independent. Even as a baby with IUGR he didn't need SCBU; he passed milstones way before other kids his age with no growth issues; he didn't grow; he walked at ten months, spoke well by tweleve; settled too well into care settings (that independence thinga gain...); never any clinginess

• or were they totally "normal" and like other babies? Never, but Sam isn't regressive autism, he is HFA

• when did you first suspect anything unusual? When I was PG!!!

• if you were me what would you be looking out for? All the above, but really a feeling that something isn't right, if strong enough to drive you to your GP, should be enough to have a child checked out.

• lastly, I've heard of research that suggests that in children later diagnosed with ASD, the dx can be predicted by their movement patterns in babyhood. This did work for Sam ,es (the whole BINBIC thing and cross patterning?) but I have no idea if it true for all; I suppose if it were they wouldn't test individually for it would they, as they do at BIBIC?

he went from sleeping all night to not sleeping at all....overnight. he woke up one morning as normal and from that day on didnt sleep anymore...still doesn't - sounds familiar

also the hypersensitive mouth thing, Sam just didn't feed properly or grow for months. But we got caught in a health professional dearth over millenium weekend and had to do cup feeding ourselves, as no-one could help

oh ds1 did the coutdown thing as well. Not yet 2, could make approximate sounds for all th letters of the alphabet, equals, divided by and times, but couldn't say yes or no.

Ds1 used to read out words from the computer screen at around 2.5yrs but didn't say anything the rest of the time. It was quite creepy tbh.

We are currently awaiting assesment for DT1 possiby ASD

He has gone from sleeping all night to no sleep- thankfully he has now been prescribed melatonin though.

He smells everything I mean everything

Everything around him has to be in his mouth.

He doesnt cope with routine change AT ALL- the whole town hears him if things change

He has no sense of danger- jumps off his brothers top bunk, runs onto roads etc, i keep him in a buggy as much as possible for his own safety.

He doesnt understand to much information you need to be short and to the point-with the use of picture cards

He was a good wee talker then stopped talking and when he started again he has the worst stammer i have ever heard and was not audible at all- he is getting better

God I could write a book on him and he's only 2.5yrs

Any advice??