9 Month old Autism - Help I'm Devastated

[bacothefoil]

Hi Mummies,

My little girl is 9 months old and I am more or less convinced there's a development issue.

She has never been a social baby and while she does smile and laugh it's terribly hard work to achieve. Her eye contact is fleeting, she seeks it sometimes in relation to food but never to play and we have no back and forth interaction (waving, talking or smiles). Having spent the afternoon in the park yesterday with my friends babies it really confirmed in my opinion that there is something very different going on.

She can clap, but never does it in response to someone else clapping, just happy clapping by herself. She wont hold more than one toy but will hold a toy with two hands and is very cautious about picking up a new toy, she likes a good look it first. She has recently started giving me toys every now and again (which I love) and started babbling a week ago. She's seems behind from a gross motor standpoint, she is just beginning to commando crawl but can't get from sitting to the floor without banging her head.

She is a very quiet 'good' baby. She sleeps through 7 to 5/6ish and doesn't yell for me when she wakes up, just wriggles round a chats. She's a good eater. She doesn't tend to cry much but does have a low level grumble noise she makes a lot. I could never differentiate her cries as a baby.

In reality I'm not looking for someone to tell me she is or isn't autistic, I know that's not achievable via a web forum, and to be honest I'm tired of people just telling me everything's fine and she's a quiet baby when I'm sorry, but I know that's not the case. I would however like to feel like I'm doing something as at the moment I'm just feeling devastated.

My DH has slowly worsening epilepsy which makes getting time to myself very difficult and I don't know how we'll cope as we get older. There's no family close and I'm giving up on the idea of child 2 for fear they might have issues as well. (I appreciate I'm getting ahead of myself but my brain is on a roll). I feel like I'm in mourning for my future life, baby #2 and dreams for my little girl. Every baby group I go to, which I do for my little girls' benefit is torture for me as I'm crippled with jealousy of the other mums.

I guess I'm looking for help in finding two things:

Firstly mental health support - anyone good in Greenwich / Lewisham area as I can't go on feeling like this.

Secondly - has anyone managed to push via the NHS / privately for early therapeutic support for their little ones. I would really like some pointers on activities to improve her social skills so I can feel like I'm doing something.

Thanks mummies.

@Bpr187 - how are you holding up?

Hi @bacothefoil
Yeah we’re doing ok, I’m still very concerned and there’s something definitely going on. He’s 10.5 months now. We’re having early intervention with OT and physio which he’s doing well with. He’s still not crawling but he’s trying so hard bless him, he falls down when he tries to move! I think I’ve already mentioned that I’m not that worried about those things though, he’ll catch up eventually with all that. It’s more the social side, again, it is improving. I’m getting more smiles now than I use to but he still ignores people and completely blanks anyone who calls him. It’s been difficult coming out of lockdown as there’s been so many people who want to see him and obviously when we have seen them they’re desperately trying to get his attention to play with him etc and he’s just not interested so I get “aw he won’t look will he” or “aw he’s not interested”. Which is super hard :( but I’m just trying to get on with it and keep plodding along. Thank you for asking xxx

You are right to be concerned. It may be helpful to look at your and your husband’s family history, to see if there are any hereditary conditions that could explain the baby’s behaviour. The sooner you are able to pinpoint the problem, the sooner you can decide what to do with it.

I have 3 children my older 2 have autism and I have an 8 month old baby who im hoping dosent have autism also.
My eldest was always hitting her milestones early, perfect normal lovely baby, until she was 1.5 and things changed dramatically. She is now 5 and has been diagnosed with ASD and ADHD.. im just trying to say you don't always notice it in babies, because I definitely didn't with mine x

@Bpr187 - Glad you’ve got some formal support now. It’s so tough but it sounds like you’re doing all the right things. Not a lot to do but plod along, but keep going all the same. Big hugs!

@ohdearymemumof3 Can I ask how you managed your own mental health when you started to worry? Sounds like you had a long road to diagnosis. At the time I posted this I knew the internet wouldn’t give me the answers I really wanted about my kid, but I felt very lonely and did need support.

My mental health is in bits. I'm struggling so bad. I went to the drs Saturday because I'm feeling so helpless and depress and all he did was suggest a load of things that aren't helpful and that I didnt already think of myself!.. yes long road to diagnosis for my daughter shes now 5 and first saw paediatrician at 2.. my son got referred to paediatrician as soon as he had his 2yr review with health visitor even though I knew there was delay before hand. They have told me he has a form of autism its just about seeing where on the spectrum he is now. Neither of them can talk, my daughter uses echolalic speech ( copying sentences off of programs to describe how shes feeling) you can't ask her questions or have a conversation with her and my son says 2 words so far, very big speech delay..
How old is your child? X

Hi read this out of interest as my DD is behind on milestones and things run in the family but just wanted to suggest looking at the BACP website for counselors. Hope things keep improving for you guys

@Bpr187 hi how is your son doing now? Mine is 8 months and sounds similar to yours - his eye contact and smiles used to be brilliant and now it’s so hard to get him to even look at me. He seems to prefer looking at strangers!! We’re quite concerned...

Hi @jfb1989 he’s still delayed, although he’s come on a lot from all the intervention I’ve been doing with him. He’s caught up physically he still doesn’t walk but he’s only 15 months so he’s got another 3-4 months until he’s classed as delayed in that. He’s cruising and pulling up so I don’t think he will be much longer. Socially he’s still delayed even though he’s improved he’s still not developing typically and my feeling is that he is on the autistic spectrum. I was really upset in the summer and found it really difficult to accept but now I’m in a better place and just doing all I can to help him be the best version of himself.
Is it just the eye contact you’re worried about or is it more than that? X

@Bpr187 that’s brilliant that he’s caught up and improved. And it sounds like you’ve really adjusted your mindset which is so positive; this is consuming me at the moment... How did you get access to the therapies you’ve mentioned, was it through your health visitor? To be honest it’s the huge and quick change that’s scared me - he used to be so smiley, happy, loads of eye contact, responded to his name, babbling etc. And now it’s really difficult to get anything out of him, he’s a different baby. We’re seeing the health visitor on Monday so I hope that will be useful for us. It’s just so upsetting to be trying so hard with him and getting nothing back, when we used to get so much interaction xxx

Aww I know that must be so tough and upsetting... whatever happens, you won’t always feel like that (when people said that to me I found it hopeless but it’s so true). I still have bad days but the good outweighs the bad.
Is it mainly the social interaction you’re worried about or is he delayed with anything else? Like fine motor or gross motor skills?
I took him to the GP and we got referred to a paediatrician. That’s when we got access to everything through her. Portage is amazing, they would help a lot with socialisation games etc! Xx

Sorry forgot to tag you @Jfb1989

@Bpr187 I’m glad youve said that because I struggle to stop crying some days. It’s just awful having these worries about your baby isn’t it. yes mainly social and communication skills - he isn’t crawling yet but he’s able to rock on hands and knees so I’m not too worried. He stands well with support, and he’s good at feeding himself small and large bits of food and holding toys etc. I did the ASQ for him and he did ok on everything except social where he’s hardly doing any of it. We do have a paediatrician appointment on 3rd March for something else so we’re going to raise all of this at that point, portage sounds great, fingers crossed we’re offered the same. Do they come to the house, if so how often? Are you working while trying to do all the intervention you’re doing? I’m due back in May and I’m dreading it, but maybe nursery will help him, I’m not sure... xxx

@Jfb1989 That’s how I was, I cried every single day for months! Awful it was! I still have little cries now and again but they’re weeks/months apart now! My son couldn’t pull to stand at 8 months old but he was on all fours rocking too! He sounds like he’s doing well in everything else so that’s good and one less thing to worry about.. we had delays in everything I didn’t know where to start with it all! Portage should come to the house but during coronavirus they won’t but they’ll do virtual and give you some tips on what to do xx

@Bpr187 & @Jfb1989
Hello i’m just wondering if you have any update? My little one is 7 months old, has been referred to a developmental pead. Similar situation in that his social/communication skills have never been there. I’m crying every day wishing it was a bad dream. I’m just wondering with hindsight is there anything i can be doing myself at home? Thanks.

@irishgirl28
Hi, aww bless you. I remember being like that and it's awful. I do still feel sad about it sometimes but I just remind myself how far he's come and how well he's doing and then I feel better. If you look online and good DIR Floortime and intense interaction.. there's also a good YouTube channel called "teach me to talk" that I use to watch. She gives really good tips on interaction and not just talking. It's just all about being way over the top really and being as engaging/happy/excitable as possible to get their attention. Let them choose something to play with and see if you can involve yourself.. I use to use toys that my son couldn't necessarily operate so that he would would need my help to get it to do something. Once he realised that it was me doing it, he would give me lots of eye contact/ sounds as if to say "do it again"... I would just follow his lead and just do whatever he wanted basically (and I still do this now).. it's exhausting but when I see all the smiles and interaction that I never use to get then it's so worth it. I hope that makes sense... ask whoever you're seeing if you can have some involvement with portage. They're great too. Message anytime if you need to chat. Take care of yourself xx

@Bpr187
Hey! How is your son doing now?

@bacothefoil any update on your baby?

How is he

Hi, just wanted to update this as I know how frustrating it is to not know how things worked out! Our boy will be 3 in May and he has come on leaps and bounds since I wrote these posts. He has well over 500 words now and speaks in 3-4 word sentences all the time, he took a while to get there but each time we had him evaluated (NHS speech therapist, private speech therapist, 2x paediatrician) they said he definitely didn’t seem autistic and to just work with him on his speech. We worked really hard with him but made it fun, and he really has improved so much, still behind but not a concern to anyone who meets him. Hope this gives some comfort to anyone in a similar position that it doesn’t necessarily always work out the way you think it will xx

@Bpr187 , @Littlesoul123 ,@Mas05 , @ttrrii, @irishgirl28 - could I ask how are you doing now? I am currently going through the same and can relate to so much that has been written. Xx

@Bpr187 , @Jfb1989 ,@bacothefoil how are you doing? Did your babies do any repetitive hand motions? Hand flapping / twirling / feet twirling? Xx

@Wobblyheart hi we are doing good thank you. As far as development my little one is on track. Still has some weird actions here and yhere but not worries for autism as of now as all babies do weird stuff.

So good to hear @Mas05 , what were the weird actions you were worried about?

@Wobblyheart he used to flap his hands alot when excited. Then he used to look his hands. Recently he started shrugging his shoulders. But flapping hands when excited is typical. And looking at his hands at that age is milestone. Shrugging shoulder can be because of teething or can be a tic. But it has been reduced alot
He has also started toe walking but its also a milestone at this age and mostly all babies toe walk at some point in time. What are you worried about?