Poor social interaction/ possible ASD 9 months old? Please help!

[ruth2010]

My son was born prematurely at 30 weeks and suffered from septicimia and meningitus. We know he has a small area of brain damage as a result. He was thought to have cerebral palsy when he came out of hospital because his limbs were very stiff. Lots of physio has really helped this and physically he is making his milestones.
However, socially, his eye contact is poor and although he does smile it's pretty inconsistent. This is devastating for me and I am suffering from a depression mainly because i find it so hard to bond with him. I know it is too early to diagnose ASD (have worked a lot with kids with ASD)but I would love to hear from other mums who also noticed these problems early on to hear how they coped / anything they did that helped their child or themself. I don't know whether these symptoms would also put be down to the brain damage and therefore not described as ASD? I have found the professionals I have spoken to useless and have not felt listened to. They want me to go away and watch him develop and 'enjoy' my baby. Any help / advice really welcome.

ds2 was born at 28 weeks, he was a largely unresponsive baby, didn't like or seek any stimulation.
All his milestones were delayed so I didn't notice his social milestones any more delayed than the others.
It was hard because having been through so much I wanted to cuddle him & for him to want & need me BUT actually he wanted to be left alone. In fact he was the easiest baby in the world.

The thing i've learnt about prem babies (& all abbaies i suppose) is that they just develop so very differnetly to term babies & it can also be very disordered development.
It is so hard when you are told to watch & wait as you need & want the answers, its that horrible feeling that its all outside your control.

I can't tell you all will be well with your baby but he sounds like an amazing little fighter who is doing very well.
Roll forward 8 years... my ds2 does have some long term disabilities but he is the most loving & cuddly of children & we ahve a very close bond now.

Have you spoken to the HV? Does the SCBU ahve any local groups, i found my best source of support from other local parents?
Take care

My son was just how you describe (tho floppy not stiff) ..he didn't smile til VERY late (nearly 10 months)and then it was at bright lights and shiney door knobs not at us. I found it VERY difficult to cope with and developed severe depression as a result.. I was convinced he would never really smile at ME, was convinced he didn't love me and that we would never bond.. it was awful and all the professionals could say was 'we'll have to wait and see' I resented every mother with 'normal' smiley babies and pretty much hated the world for a long time!

Well we had to wait a while but gradually he did become sociable and his eye contact improved, the docs think he had some sort of delayed visual maturation..his eyes worked but his brain wasn't really putting it all together! He also has long term disabilities.. he has moderate learning difficulties and ASD, but far from being the non loving, distant child I imagined he is the most loving, gentle 13 yr old, who loves everyone and most definitely loves me:):)

What helped my sanity was meeting other parents whose children have special needs and talking talking talking.. finding out my feelings were far from unusual. And gradually (somewhere between age 1-2) I realised I adored him whatever his future, and it became 'ok'.

Hang in there.. he will love you and you will bond. Be kind to yourself because you've had a very hard start and it's not what 'should be' but he may very well surprise you .

Seeing as he was so premature and there were a lot of complications after the birth... has he ever had his eyes tested??
My DD has congenital cataracts so she took 'longer' than most to interact with and smile at us, but it was mainly because she couldn't see us!

Please hang in there, you're doing so well already and it is so hard, you've been through so much. I know how it feels to just want to punch professionals who are telling you to 'wait and see' and 'enjoy it' and all that s**t. Your DS sounds like a real fighter, and you WILL bond with him. You already do have a bond with him, it just might not feel that way at the moment :( He's your son, and no matter what difficulties he does or doesn't have, he will love you, and you him, no matter what. :)

I also hate the 'go home and treat her like a normal baby' line...

What do you think I'm going to treat her as?? A puppy???? Idiots.

I'm sure you're hearing all of these, and we'll all back you up if you do ever decide to head butt any of them :)

How is your ds doing in terms of making sounds? Cooing/gurgling/babbling?

Unfortunately when the midwife says "just enjoy him/her", no matter how nice she is, she doesn't have to live your life and have your concerns day in and day out.

I sort of know how you feel because i'm pretty sure my DD is on the spectrum and it is very hard to come to terms with. It's even harder though when it's too early to be diagnosed, so you're just guessing and so is everyone else. At least when you have a diagnosis you can try and accept it and move on.

I think that if he's giving you such big concerns your GP(if there any good), should be willing to refere you, even if he is only 9 months old. If the signs at that age are obvious then chances are your gut feeling is right. I really would push for a referal.

Is your son crawling yet? Does he like to play? What sort of toys does he normally like playing with? Does he notice if one of his toys is missing?

I don't know why i put "midwife". I meant to put health visitors etc.

My ds1 was born 2 weeks LATE, so to term, really, but I noticed the same things you all noticed. Pathologically easy baby, didn't mind being cuddled but didn't care if he was put down, only cried if he was hungry, didn't cry for wind, wetness, teething, attention, separation from me.... I thought I had neglected him somehow, and that he had some sort of attachment disorder.

Now, 7 years on, he has a diagnosis of ASD, ADHD, and sensory processing disorder (which is why minor sensory discomforts such as bumps, wet nappies and teething didn't bother him)

The bonding thing is hard.

I will go against the grain here, and say GO to those baby groups, and congratulate yourself on how beautiful and easy to deal with your baby is compared to all the other babies (congratulate yourself in your head ONLY, nobody likes to hear it). Your baby will be the most perfect and adorable baby there, I don't know about anyone else but I found all the other babies strange looking and whiny.

Thanks for all your messages and for the support.

DS has had initial eye tests and hearing and both seem to be fine at this stage.

He is babbling a bit although he won't copy in response to us.

Mostly likes toys with lights, noises, bubbles...very sensory. don't think he notices if toys not there.

He constantly whines/grumbles and get frustrated very easily. This is really hard to deal with when I feel so down myself.

Not crawling yet but he is only 6 and a half months corrected age and beginning to look like he might.

dd2 has cp (she was full term but birth hypoxia) and didn't smile until very late. in actual fact, i didn't think she would, and it was the worst thing - how do you care for a completely unresponsive child? (of course, you do, but it seemed so difficult). she had, i think, 9 re-referrals for hearing, and has worn glasses since she was, oo, about two?

anyhoo - she's 7 now. walks, talks, laughs like a drain. a completely different child, and actually, the most repsonsive of all three - in fact, probably overly . she had lots of issues with noise and light around two/ three, and we had to do quite a lot of de-sensitisation stuff.

get out of the house, go to lots of baby groups, get involved. there's plenty of time for intervention later if necessary, but he sounds as though he is doing okay. it's very normal to be nervy about a prem (or any child with suspected issues), but only time will give you the full picture.

i wished for a crystal ball sooooo many times. (in fact, the first time was sitting int the scby waiting area with a mum of a 23 weeker in the next incubator who had been born on the same day.) we said 'if only we could fast forward 5 years, that would tell us all we needed to know. but of course life isn';t that simple. you worry about different things at different stages - from sociability hearing and sight to walking and talking, then to learning disabilties, then to social interaction with peer group, then to (omg) relationships and adult life - driving? eek! their own babies? double eek.

nothing will stop you worrying - but time does help you to get some perspective.