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Parents of Children with an ASD diagnosis

(16 Posts)
FTMK Wed 07-Jan-15 10:50:48

Hi. Parent of a 9 wk old here. I know it sounds early but we are getting v little eye contact (although stares at walls, edges, patterns etc), no social smiles, no response to toys e.g. Following movement or turning to sounds. Doesn't turn to look at us when talking to him close up (in fact often turns away). He does hear as loud noises when he's asleep cause Moro reflex. He was 2 weeks early with a traumatic birth and a SCBU stay but he's definitely different to friends' babies of similar ages. There's a family history of ASD (high-functioning). I know its too early to diagnose or intervene (I work in SEN when not on mat leave) but wondered what signs people with diagnosed children had in the very early days. I think I'm pretty resigned to it already but a bit of me still hopes it might improve. He's so gorgeous but definitely not responding appropriately.

PolterGoose Wed 07-Jan-15 11:31:09

Message withdrawn at poster's request.

Frusso Wed 07-Jan-15 11:57:43

Message withdrawn at poster's request.

Ineedmorepatience Wed 07-Jan-15 12:21:59

Dd3 was terrified of loud noises and bright lights from a really young age, probably birth. She would only sleep when wrapped tightly in a blanket with at least 2 or 3 other blankets on top of her.

She would only take a bottle from me, she was bottle fed from birth but usually refused to take a bottle even from her Dad!

She would not tolerate anything other than milk in her mouth so when she had a reaction to her first injection it was impossible to get calpol into her, she screamed and writhed and vomitted it back sad

She is my third child and I knew from a very young age that she was different.

She now has dx's of Asd and Spd!

I agree with polter If you feel there is something going on, you are probably right. Enjoy your time with him, you will know if you need to get him assessed.

FWIW, I think the HV will probably fob you off if you talk to her. Just remember he is your child and you know him best!

Good luck flowers

FTMK Wed 07-Jan-15 12:40:29

Thanks all. We had the 8 week check yesterday and I mentioned the lack of social smiling and eye contact to GP. He wasn't particularly concerned then but when I mentioned the lack of response to toy noises and sounds he was (e.g. Can drop a pan on the hard kitchen floor and get no response when he's awake). He tried clicking his fingers next to his ear and got no reaction. He was slightly more concerned then. He asked if I had the 3-4mth HV check booked in and said to come back after that if I was still concerned. I think I'm just more aware given my job and more importantly the family history. If it was just the smiling I'd put it down to early and traumatic birth plus reflux and generally being grumpy but it's the lack of response to sounds and toys that rings alarm bells. We are getting babbling and cooing. He sleeps well and is pretty chilled out (almost in his own little world...) Interesting to read everyone else's experiences! I am enjoying him but I'm aware of the need for early intervention and how slow services are. Not that any of that is for now - I'm just not that good at being patient and waiting and seeing!!!

Frusso Wed 07-Jan-15 13:10:39

Message withdrawn at poster's request.

Handywoman Wed 07-Jan-15 16:47:40

Has he had a hearing screen?

Andanotherthing123 Wed 07-Jan-15 18:29:27

When dc3 was born dh and I really noticed that he wouldn't look at us and didn't smile. We felt sure he had ASD like his brother and felt so depressed. Coincidentally he saw a peadiatrician at 9 weeks for somehing else and she noticed he didn't 'fix and follow' with his eyes. A referral to opthamology demonstrated that he had delayed visual maturation-literally meaning his focus reflex had been slower to develop-but that sorted itself out by 12 weeks or so.

We also found out that he is extremely long sighted which he'll need help with later on, but we were bloody delighted. Now at 11 months he's happy, chatty and social and developing in the same way his eldest NTbrother did.

Please go back to the gp and ask for a referral to a general peadiatrician-not responding to noise should be checked out not left for the next check IMO.

StarlightMcKenzee Wed 07-Jan-15 18:37:34

www.earlyinterventionscotland.org/

Make contact with this organisation. They are excellent and do outreach and training so you don't have to be Scotland based. They also have good contacts around the UK.

It's too early to diagnose but it isn't too early to intervene.

StarlightMcKenzee Wed 07-Jan-15 18:45:28

https://www.whatdotheyknow.com/request/the_individual_assessment_of_ear#incoming-508346

Also download the document contained in this request so you can start assessing and have something concrete to work with, both for gaps you can begin to work on and for evidence to show authorities when the time is right.

FTMK Wed 07-Jan-15 19:47:24

He passed his hearing screen the morning after birth (although I appreciate this can be wrong). Andanotherthing did your dc3 respond to sounds? I think I would be less worried if he had one area that seemed developmentally slower but there seem to be a few. Corrected age is 7 weeks but he should be responding to sounds - I dropped a can on our wooden kitchen floor when he was in the bouncer next to it and he didn't even flinch but he woke when an ambulance went past when we were out with him in his pram. I might ring the HV again but she's newly qualified (although had nursed for a long time before). The no fix and follow sounds familiar. Starlight, I think I might have come across you on Twitter and TES in my professional persona - do you post/tweet over there. Thanks for the links - will have a look.

Thanks all.

ouryve Wed 07-Jan-15 20:01:06

DS1 started very easily (he kicked the living daylights out of me when we took the protective plastic film off a new fridge when I was 8 months pregnant.) Right from being born, he became fretful in a quiet room. We always had the TV or radio on low for the first few months, or else it was impossible to settle him. He turned my nipples into mincemeat and bit me a lot. He was into everything, including my lunch, as soon as he could - crawling around the floor on his belly at 20 weeks! Pulling up on the furniture at 7 months - which was a nightmare because he had such poor head control that he couldn't sit up unaided, so fell over a lot. He screamed if he had bare feet, which was often, because he kicked everything off, until we discovered robeez. He needed swaddling until about 9 months, when we had to transition him to a sleeping bag as he wriggled out of it and screamed because he was cold. I spent many a bleary eyed morning reading Dr Sears with him spark out on my shoulder. When the HV tested his pincer grip at 9 months, he did what he'd spent the past month doing to everything he could reach and stacked the little blocks on top of each other (I do wish he was still so tidy). We offered to rent him out to test people's baby proofing.

DS2 was such an easy baby in comparison, though unlike his brother, he hated anything on his feet. It became clear after a while that he was actually rather passive. All of his motor milestones were delayed. He had low tone. He had little interest in toys. He was lovely to breastfeed, but showed no interest at all in actual food until 8 months and then I couldn't persuade him to touch any of it. Whenever he acquired a new skill, he apparently lost another. He made eye contact long and hard - we joked that he was stealing our souls because it was so intense.

StarlightMcKenzee Wed 07-Jan-15 20:16:43

OP, I tweet under the almost same name yes.

The TES - I post so infrequently there as I never can remember my password, but also it feels like a space I ought not to be much. I feel like I'm intruding in 'professional' space, but at the same time some of the lack of professionalism I sometimes come across there scares the wits out of me. I usually just avoid.

I'm sorry that you have concerns when you should be enjoying those early days/weeks. And congratulations on your new baby.

FWIW, ds would seem very 'independent' right from the start. Not seek me out. When he could kick his legs he did it with gusto, almost like running a marathon at a sprint, which I now identify as baby stimming. Family who held him used to say things like 'he's trying to get away'. Finally, and probably most significantly, he was HEAVY. Not in weight but because he never worked with me to distribute his own weight or grip on in the way that his siblings did. His awake weight was the same as his asleep weight iyswim.

ouryve Wed 07-Jan-15 20:20:22

Oh yes, the heaviness.

I envied people who could walk around and nurse. I needed full cushioned scaffolding, or else the pair of us just fell apart (not helped by my own floppiness).

insanityscratching Wed 07-Jan-15 20:21:44

In ds's red book there is written by the HV when ds was six weeks old "Mum has concerns there is something very wrong" He was diagnosed officially at three but unofficially at two and a half as having autism.
What worried me about ds were things like he'd be stiff rather than cuddling up, he would look for a light rather than at faces, he would self soothe by rocking but picking him up and rocking him would make him scream,he would scratch his pram top and he didn't seem to recognise us.
Of course dd who also has autism and was diagnosed at just two was entirely the opposite, loved to be cuddled, was a happy and contented baby and rarely cried.
I suppose in my experience there is no set of behaviours in a young baby that could predict autism really.

Frusso Wed 07-Jan-15 21:35:32

Message withdrawn at poster's request.

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