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.

My own experience of ASCs comes later but I think the important thing with social skills is to gently encourage whatever is appropriate at the age, or whatever is the next step from what they are already doing if they are behind their age. And especially to use play. My DS loved “peepbo” which DH used to play by pulling DS’s bathtowel up over his head and then down and saying “peepbo!” It was a great moment when DS pulled the bath towel up himself to get DH to play! We used to have a book of little games to play with babies like that – all those games help babies’ development. Something along the lines of this one (we had a different one, I forget what it was called)

If your baby isn't playing along with games that are age-appropriate then that's something you can take to your GP or health visitor as evidence for early interventions.

In terms of mental health support for you (sorry if I’m stating the obvious) but have you seen your GP? GPs can refer to private as well as NHS counselling and may be able to point you at counselling or therapy services which charge on a sliding scale.

Oh op you sound just like me with my first and I so regret all those assumptions and worrying that I did. She sounds just like my dd was, and I now realise she was just a good baby, if a little shy and unsociable and laid back on milestones.

You'll regret worrying so much instead of just enjoying her.

Firstly I'm not going to tell you that your baby sounds fine because I know from my own experience that just makes you feel invalidated.

You clearly have some really strong gut feelings about your DD and you should be listened to.

I have two DDs with autism and coming to terms with a diagnosis is a grieving process. It has ups and downs and you go through different stages. You have to come to terms with a different reality but, like any other grieving process, it becomes more manageable as time goes on. Whatever happens, you will not continue to feel like this forever.

My best mental health support came from other parents of children with autism. Most groups will welcome parents whose children are not yet diagnosed. Look for online forums, facebook forums and local support groups.

You may be able to self refer for speech and language therapy so ask at your GP surgery or your health visitor about that.

In our county, there are early intervention groups based in special schools that help parents with early intervention strategies. This is for all children with any early additional needs, not just those who will attend their school. It may be worth just contacting your nearest one and seeing if they know what is on offer in your area.

Also see it there is any early intervention family support in your area. Your nearest children's centre might be able to help you with this and also direct you to other support services.

I'm sure others will come along with more suggestions.

Try to keep an open mind. Children that seem to have huge differences at a very young age can suddenly catch up and then we end up wondering why we were so worried.

I'm just giving the advice I wish I'd been given 2.5 years ago, instead of listening to people who had 'been through it' when there's no telling that's there's anything wrong at all yet.
I was like you op, looking at early intervention options as I like to know I have a back up plan, but in reality I had nothing to worry about - I was just making too many comparisons with other babies instead of just enjoying my own.

Hello,

Please contact the pandas charity for mh support, hopefully there's a group who meet near you.

Regarding ASD, it's extremely early days to know. It sounds like you're doing everything 'right' - she sounds a very thoughtful baby and very secure which is great. Even if she is on the spectrum, there is so much support these days that some children can be supported enough that any 'difference' is barely noticeable when they're older.

It's worth mentioning these things to your hv just to 'log' it. My niece was a quiet observant baby, and is still like that now at 13 (gets told off for chattering at school!)

www.pandasfoundation.org.uk

Hi. Have you seen the FB group called Tea & Biscuits with Greenwich Mums? I remember seeing they had a link for a monthly meeting that might help.

I feel that you are jumping the gun with regards to a diagnosis for your dd. I definately think you need mh support. Having a baby is a massive change and it is so easy to worry all the time.

I feel that you are jumping the gun with regards to a diagnosis for your dd.

The OP isn't diagnosing her child or asking anyone to do so. She's looking for support for herself and strategies to improve her DD's social skills. Neither of those will cause a problem if her child turns out to be neurotypical.

Lots of parents of children with ASD report that they felt their child was different from very early on. Early intervention can improve outcomes so ignoring those parents does a disservice to their children.

OP, I hope you've managed to find some support.

This is me right now. Finn started showing signs at six month and is not 9 months. I am feeling like this right now 😔

How’s things now? My son is currently 9 months and I feel very similar to you did at the time x

I live in south east london x

Hi @bacothefoil

I am going through the same thing with my 6 month old and am so worried. What did you do in the end? I would really appreciate any help and advice at this really worrying and upsetting time xx

It’s so strange looking at that post 3 years on and realising how difficult things were. Hopefully for those of you who are worried I can provide a ray of hope.

So DD1 was indeed a late starter, she walked at 18months, talked at 20 months but she is now is a happy healthy 3.5 year old.

We had two referrals to a paediatrician based off the ASQ scores. In the first they concluded she was fine, the latter generated a referral to speech therapy. By the time we got to see a therapist her speech had mostly caught up and we were discharged. The next ASQ didn’t result in a referral.

I would say her social skills are probably a little weak, and she continues to take a bit more time to pick up new skills, but the life I was picturing when I originally posted is not the one I have. If I’m honest I still think there is something a little different about her, maybe we’ll get a diagnosis at some point, I don’t know and I don’t really care any more. I love the little girl I have. We have a wonderful time. She’s currently pretending to be teacher at nursery and telling her toys to wash their hands.

We’ve had another little girl who is 18 months old, early to do everything, and I am glad to have had a more typical early years experience. It was oddly comforting to know that DD1 was very different, I wasn’t imagining it.

I met with a counsellor not long after this post was made and continued for about 4/5 months. Having a neutral party to discuss my concerns with was really helpful, people who knew her were very dismissive of my worries and that made me feel very alone at times.

I also stopped googling autism. I didn’t look at what the ASQ questions were until the day of the appointment as I know I’d obsess about them. If I needed a fix I’d google a milestone she’s already reached so I could be glad she’d got there rather than worrying about what she hadn’t done. Going back to work so I had another focus was a big help as well. I stopped going to classes and NCT groups and instead went to my parents much more where I got to see her though their unworried eyes, rather than mine.

For those that are worried I think that’s ok, you’re supposed to look out for your kid. I’m glad I advocated for her, because it took a long time to get a speech therapist and if we’d really needed it, that meant we had it.

I’m not going to be annoyed / regret myself for feeling the way I did. It was pretty natural I think. I was grieving for the loss of something I didn’t know whether I’d lose in a weird way. The only advice I can give is to try to manage your worry as best you can. It’s by no means easy and you have my sympathy.

I should say thanks to all the people who offered support. I’m sorry I didn’t reply at the time, it was oddly too difficult, but your comments did help!

@backthefoil

Thank you so much for responding. That was a really uplifting and reassuring message to read. I’m so glad your daughter is doing well and your youngest (that’s also nice to know because I have been thinking the same things like would I now be able to have another baby if things get complicated) I know every child is different and this may not mean the same outcome for my child but it’s nice to know that some cases don’t end the way you picture it in your head. I wish I could see myself and my baby 3 years from now (so silly that we have these thoughts isn’t it). Doesn’t help that I’m also blaming myself for every single thing I did or didn’t do during pregnancy. Wishing that I’d never had that glass of Prosecco or bottle of fruit cider at the weddings I went to last year just incase that’s the reason why. I’m getting myself so worked up it’s just not healthy. I too need to speak to someone about this because it’s not doing me any good.

Was it just the speech therapy you did with your daughter? Or did you do anything else with her if you don’t mind me asking xx

@bacothefoil
Thank you so much for responding. That was a really uplifting and reassuring message to read. I’m so glad your daughter is doing well and your youngest (that’s also nice to know because I have been thinking the same things like would I now be able to have another baby if things get complicated) I know every child is different and this may not mean the same outcome for my child but it’s nice to know that some cases don’t end the way you picture it in your head. I wish I could see myself and my baby 3 years from now (so silly that we have these thoughts isn’t it). Doesn’t help that I’m also blaming myself for every single thing I did or didn’t do during pregnancy. Wishing that I’d never had that glass of Prosecco or bottle of fruit cider at the weddings I went to last year just incase that’s the reason why. I’m getting myself so worked up it’s just not healthy. I too need to speak to someone about this because it’s not doing me any good.

Was it just the speech therapy you did with your daughter? Or did you do anything else with her if you don’t mind me asking xx

@Bpr187

I’m glad I could help if only a little bit and I’m sorry you’re struggling. It’s so tough. I think of myself of being quite level headed and this broke me, you’re not alone.

I like you blamed myself for missing a few days of folic acid before I got pregnant, doing both too much and too little exercise, that glass of wine! In reality if the causes are so complex, but mat leave gives you so much time to think! Argh!

I was very afraid for what the future might hold and like you was desperate for a glimpse of her as a 3 year old, so I “knew” and could start to do something proactive.

I think the other thing to be aware of is that people with kids with ASD find their groove and have great lives. From what I’ve read it is an adjustment but it gets better. I’ve become much more aware of neurodiversity as a result of this and more forgiving in general so there are some positives.

Beyond the speech therapy the only other thing we had was a hearing test.

There’s a podcast called teach me to talk which I’ve listened to subsequently in which a US based speech therapist looks at the stages of learning to talk and how to support each one. I listen to it now out of interest but I think 3 years ago it would have been an anxiety trigger for me. She talks about making yourself fun, getting down on the floor with them, trying lots of things until
you find what your kid likes and then finding a way to insert yourself into the game. I tried this a bit when I had the energy.

Beyond following up with your health visitor there’s not a huge amount you can do at this stage beyond trying to keep yourself healthy, body and mind.

I’m sorry it sucks right now but it’s worth remembering that one way or another it’s temporary and you will feel better.

@user1471477415

Hey - I’ve posted an update to this thread which may be useful for you. Sorry I didn’t see you earlier request.

@bacothefoil

I know and in hindsight I know that it’s probably not the cause but I just wish I could go back and be squeaky clean to make sure I was not to blame.

We’ve been in touch with an early intervention lady so I’m just going to focus on helping him as much as I can now when he’s small.. I’ve read that any intervention from as young as possible is a bonus and I just think it won’t do him any harm and will help me mentally if I know I’m doing something about it if there is anything wrong.

I’m really laid back too (hence the chilled out pregnancy where I just thought “oh that’s fine about everything” - going be a total a total wreck on my next one, if it ever happens). So when I first raised my concerns with my family they were all saying to me he’s fine he’s only 6 months, stop comparing etc it was frustrating because I’ve never once compared him. I just know that not smiling at mum at 6 months is not normal. Regardless of all the other milestones. Did your daughter play at all as a 6 month old? Like hold and play with toys? He struggles holding toys and is not interested in them unless I physically put one in his hand and then after about 10-15 seconds he usually drops it. Again, I’m not that worried about this stuff because it’s all stuff that can be taught, supported etc. It’s more the social side, the no eye contact, no smiling etc is so worrying. He does smile but it’s never at people it’s at a picture on the wall or a light. He will laugh if I tickle him but if go in his eye line he will instantly stop.

It’s just nice to know that I’m not going through it alone and that like you have proven, it doesn’t always end up the way you picture in your head.

I’m hoping with time things will get better and my brain will switch off! Xx

@Bpr187

Hi again,

Sounds like you’re doing the right things for him. As you say, the earlier you start helping him develop play skills the better for both you’re brain and your little man.

On the toys issue it definitely took her a long time to really actively play. I’ve looked back at videos and at 6 months I can find one where she was ringing a bell but on her back so it was hooked on and she couldn’t figure out how to drop it. She clearly wanted to. I remember her not playing was a worry of mine. She didn’t have the dexterity to feed herself until around 9 months. I have a video of her managing to shove a raspberry in a mouth that I was so excited about. She didn’t bash 2 toys together until she was close to a year. Didn’t like peekaboo etc...

The eye contact is so tough. I would spend ages pretending to sneeze because it was the only way to get her to look at me and smile. That progressively improved over time and is okish now.

Time is a healer and I think the turning point for me was going back to work. Partly because I was worried her nursery were going to see what I saw and they weren’t hugely worried but mainly the routine and chance to focus on other things. I was still worried but it couldn’t occupy 95% of my thought process.

Much love your way - keep going!!

Hi @bacothefoil

He doesn’t have the initiative to play with anything either, like he doesn’t want to. He’s happy to sit there and chew his hands for a while unless I put something in his hand. Or hold something in front of him, he won’t reach for it he will just stare. He can’t feed himself either so no baby led weaning here lol! He’s not a content baby he’s very highly strung so I’m struggling with the weaning a bit as he gets sooo grumpy in the bumbo and doesn’t seem to like many foods at all and even then he will eat hardly anything. How did you find weaning?

She literally sounds exactly like my little boy! Except I’m yet to find something to make him smile at me directly although I do think we’re getting somewhere with peekaboo, his reactions are starting to change slightly he’s getting more excitable. I can tickle him to laugh but a social smile is proving difficult at the moment but I’ll keep trying.

We’ve been referred to a paediatrician for the delays that I’m worried about so that’s something and hopefully we can still be seen even with all the covid going on (that is making everything so much worse as hard to get the ball rolling on anything as everything is closed).

Thank you for responding again, it really is comforting knowing others are going through/been through this because it’s really tough place to be. I’ve literally never felt the way I do now in my whole life. It’s so hard :( xx

I'm so sorry you are going through this. Definitely push your gp, they can suck at referrals. Just wanted to chime in to say my friend completely controls hsr epilepsy through diet. Its a ketogenic diet created in the 1920s. It works for her.

@Bpr187

Hey, sorry for the slow turn around manic week.

Weaning she was actually ok with, she liked food but couldn’t get it in her mouth. She would sit in the high chair, I do remember her not liking the bumbo though, I’m guessing you’ve tried other things though.

That gradual change is what I started to notice with her. She would start to pick up a skill but take ages to do it reliably so I’m glad you’re starting so see some progress.

Good on you for getting the referral, I don’t think we started until 9 months but the appointments take forever. Hopefully it doesn’t take too long.

You’re definitely not alone - I’ve had 2 other people message me since updating the thread. Try to keep you brain occupied wherever you can, I’m guessing you’re not getting much sleep as well which really exacerbates things. Look after yourself!

@bacothefoil

No worries at all! He’s so funny he heaves at everything unless it’s completely smooth and even then if there’s a bit too much in his mouth he starts heaving. He doesn’t chew at all. I’ll keep trying though. I put him in he high chair but he doesn’t sit up very well so he actually prefers the bumbo. Although he loves my mums high chair! Typical!

Yeah they did it as an urgent so I’m hoping that even in the current climate, it should be no longer than 6 weeks.

It’s just the most worrying and frustrating time!

Nope not much sleep at all he still wakes 4-5 times a night it’s exhausting. Luckily my husband is great so he gets up with him at 6am for me to lay in so it’s not too bad. Thank you for messaging again. I’ll probably appear in your inbox soon lol x

think the other thing to be aware of is that people with kids with ASD find their groove and have great lives. From what I’ve read it is an adjustment but it gets better. I’ve become much more aware of neurodiversity as a result of this and more forgiving in general so there are some positives.

This.

My DS (6) has an ASD diagnosis. Also a very calm baby who didn't really respond much to his environment. Signs of ASD signs started appearing around 11 months (but with hindsight I can now see red flags as early as 8 weeks.)

It's been hard at times - battles for school funding, trying to understand triggers for particular behaviour etc. You do have to navigate things that parents of neurotypical parents don't have to worry about. However, 6 years down the road, our family is a very happy one. DS tends to hit milestones later than his peers, so you do need to mentally opt out of comparing your kid to their peers, which is hard to do, but experience has taught me not to underestimate what he's capable of.