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Pretty sure my baby has autism. If you had known early, is there anything you would have done/done differently? (I also have a DS who has autism)

49 replies

NeedsACuppa · 25/01/2020 16:55

My 5 year old DS has autism. I knew pretty much straight away that something wasn’t right, although for a long time I did wonder if he was a very high needs baby. We tried to get him assessed when he was around 18 months and our GP refused to refer, telling us that it was too early to tell, but lo and behold when they did assess him later at 2.5, he got an autism diagnosis (it was pretty clear to all by then).

I have a 9 month old baby. She isn’t responding to her name and there are other red flags, quite a few to be honest, although she also does things that my little boy never really did like pointing a lot. Like with my little boy, I just know. I am trying to push down my sadness and do everything I can for my baby. I know that there will be very little help available right now as I will be told it’s too early, but I want to do my best and I have learnt enough with my son to know that it’s on us to do stuff with/for her. I have ordered the Denver Early Start book which I’ve read is good for babies. (I did ABA with my son, but he wasn’t that suited to it. We switched to a more Floortime approach and he did much better (he has strong PDA traits)).

So I guess my question is what would you do differently (if at all) if you had known when your child was a baby? I am doing silly little things that I think will help. There’s a lady in my local supermarket who my baby absolutely loves. She seems to have the knack of making her really laugh and engage so I try to go in there if we need shopping and to go to her queue as I know my baby will love to see her.

I know someone will say (and they’d be right) that I need to just enjoy my baby. I’m trying to do just that and to push down the sadness and the panic. All of the difficulties that my son has faced, and my regrets at not getting help sooner, mean that if there is anything I can do that will help, however small, I want to do it.

I couldn’t adore my baby more. I just want to do all that I can. Also, I know that it’s early, she’s only tiny, but when you know, you know.

I feel like I should be able to say “I got this”. You’d think that I would be well equipped because of everything I have learnt with my son. However I can’t really think straight. I try to play with her, to engage her, make her laugh and make her happy, but a voice in my is always saying, “not you too, my precious baby”. I am feeling kind of paralysed. I guess I am in more of a panic than I am admitting. I know I need to get my big girl pants on fast.

I’m feeling pretty heart sore right now xx

OP posts:
Toffeecoffeee · 11/05/2020 12:49

Hi Bpr187

Thanks so much for your reply!

It is so scary it’s all I can think about, I hope your ok too!

Have u received the books yet? I was worried about there being a delay getting them due to coronavirus if they are shipped from another country xx

Harmos · 11/05/2020 18:07

www.rompa.com/more-than-words-from-hanen-book.html

Thank me later

NeedsACuppa · 11/05/2020 21:11

Thank you! I have everything crossed that I don’t catch it!

Ha, yes you get to that point where you realise you’re not going to be able to do cc so you have to just ride it out.

That sounds great! I did ABA with my son but he wasn’t that suited to it (he’s very demand avoidant) and we found floortime worked better for him. I’m really glad your therapist is helping, that’s brilliant. It’s just finding whatever works best for your child.

I’m trying to remember when her eye contact got better. It was particularly poor when she was 3 and 4 months and we were still under the hospital at 8 months so it was probably around then that we saw a difference. It happened slowly but she seemed to be able to track us and objects much better and from there things improved a lot.

The worrying aches are awful, I know. It’s not silly at all. Of course we all wish that we were going through this in the way that we expected, without the crippling worries. The unknown is what is so frightening. But if you’ve already seen an improvement in your baby’s eye contact that is great and massively encouraging that he’s responding very quickly to therapy. That is progress right there.

My story is not straight forward, as we had another child who died unexpectedly. We didn’t know for certain when I fell pregnant that my son had autism but we had an idea and we were starting the process of getting assessed. So for me, having my baby girl was wrapped up in lots of things, not just worries about autism (which I did have as I knew for sure this time around that my son had autism) but also feelings I had to deal with about having another baby after losing our precious child. It’s not something I want to go into too much as it’s obviously very painful. But I would say that we came to the decision when trying again that we would just have to cope with whatever came our way if we decided to have another baby as we knew there was a chance of them also having autism. Of course, you always want your child to be ok and to not have any difficulties, and it did hit me very hard when I started to notice some red flags. Somehow, we were so focused on her just getting here safely that the autism worries were pushed to the side so I did and do still struggle with the realisation that she may also have autism. Our daughter is such a blessing though and she has brought us all enormous joy, especially my son who absolutely adores her. Seeing them together is the greatest joy of my life (but that’s not to say that it hasn’t been really tricky at times!). It’s such an individual decision though, especially as to timing, and I understand the feelings both ways.

Hi @Toffeecoffeee I’m so sorry you have worries. It’s such a stressful place to be. The books are great and thanks to Harmos it looks like you should get them quite quickly.

Sending big socially distanced hugs to all Xx

OP posts:
Bpr187 · 12/05/2020 09:38

@NeedsACuppa I’ve sent you a PM xxx

Toffeecoffeee · 12/05/2020 13:16

Thanks Harmos and Needsacuppa xx

Bpr187 · 12/05/2020 13:41

@toffeecoffeee

No not received them yet but they’re on the way and I only ordered on Friday. Xx

Toffeecoffeee · 13/05/2020 15:16

Thanks Bpr187.

I spoke to my HV today and told her my concerns, she said I’m right in being concerned and she’s going to start the process of referral.

Even though I’ve been worried my heart sank when she confirmed I should be concerned x

Harmos · 13/05/2020 16:56

@Toffeecoffeee
Hi, is yours a boy or girl? How old? Was he/she a "good / quiet / easy" baby?

Toffeecoffeee · 13/05/2020 17:02

Hi Harmos,

He’s a wee boy and is 15 months old.

Definitely not a good quiet or easy baby! Haha.

He has been very demanding since born, he had very bad colic and had a milk intolerance.

Things have improved slightly since he began walking but some days are very hard, he moans a lot, wants to be picked up constantly and screams when I leave the room which I believe might be separation anxiety xx

huntinthehornybacktoad · 14/05/2020 09:25

I think most of us experience or remember the paralysis. Flowers

I love this: "There’s a lady in my local supermarket who my baby absolutely loves. She seems to have the knack of making her really laugh and engage so I try to go in there if we need shopping and to go to her queue as I know my baby will love to see her." Stanley Greenspan (the doctor who created floortime) would have really encouraged you to keep looking for these moments (he said something like it's a moment where you know on some deep level that this is good for the child and it isn't important to know why).

"I know someone will say (and they’d be right) that I need to just enjoy my baby."
I used to say silent in response to this (because of having to put on "The Face") but "go fuck yourself" is my actual response :)

huntinthehornybacktoad · 14/05/2020 09:27

"....stay silent...."

huntinthehornybacktoad · 14/05/2020 09:29

On a more practical note than telling annoying people to go fuck themselves (satisfying though that is), perhaps at this very young age you'll be thinking most about what patterns you can spot in the sensory perception/processing?

I read "Sensory integration and the child" but I believe that you will find other recommendations on the sensory stuff across the archives of this board. I didn't go very deep with the sensory stuff because of the "if-I-think-about-sensory-stuff-that-means-it's-autism" phase I was in.... pity because I could have maybe saved a lot of pain :(.

However, all's good now :)

NeedsACuppa · 23/05/2020 01:06

I’m so sorry for the delay in responding to your messages @huntinthehornybacktoad
We have all been really sick and sharing our germs here, so combined with a lockdown, it’s been a bit hellish!

Thank for for what you said about Greenspan Smile It’s so nice when you get those moments where you feel that something is good for your baby. Especially as so much time is spent wondering if I’m doing the right thing. It’s always joyous and lovely when it happens. I will keep searching for them!

“The Face” made me laugh. I have definitely fine tuned that over the years and the responses said only in my head! 😀

I do need to think a little more about sensory stuff. My son had an explosion of sensory issues when he turned 3. He had very few sensory issues before then, or at least few sensory issues that we would have had the knowledge to spot/understand at that time. They caught us by surprise and we’re hard to manage. You’re so right that it does need careful thought to avoid the pain, so it’s a good reminder to focus on that a little more. That’s really helpful, thank you! I’m glad things are all good for you now. Lovely to hear that 😊

@Toffeecoffeee my son was a very demanding baby so I know how completely draining it can be. I hope the referral process is not too painful. I was also gutted when I was told my worries were valid.

👋 to @Bpr187 and @Harmos

OP posts:
violet850 · 27/10/2020 06:54

@NeedsACuppa just wondering how your daughter is doing now? I hope she's continued to make good progress.
I have a 2 year old on the pathway and a 3 month old who is already missing communication milestones and I'm finding it so hard not to worry all day and become detached from her 😞 I love my son to bits but I'm ashamed to say I'm struggling to love my daughter in the same way so far, no doubt not helped by the stress of my son regressing when I was about 6 months pregnant.
I hope others who posted on here with concerns are doing ok too.

ChristmasSeacow · 10/11/2020 23:49

Hi, I’ve just found this thread (I don’t come to the SN boards often these days).

I can completely identify with the ‘heartsore’ feeling the OP talked about, and so many things others have said. I have a DS, now 8, who was diagnosed at 3 (I ‘knew’ from about 2.5). No early signs of concern, though he didn’t wave by 12m-ish (did point a bit though). The biggest flag was that his language development was normal to start with and then became quite idiosyncratic over his second year - confusing pronouns etc, and very echolalic, couldn’t (and still can’t) process or answer question words. Also he didn’t interact much with other children, though always had a lovely connection with his close adults (still does).

I had another child just before he turned 5, a girl. We thought hard about it because we knew there was a chance of another child with ASD but I really wanted another. All was well at first but gradually the signs have been creeping in. She’s 3.4 now and the signs are getting clearer by the day. At first I was trying not to overinterpret everything she did, or didn’t, do. And she has many life skills that my DS doesn’t have, like fairly functional speech, and good joint attention, so I didn’t know if I was worrying over nothing. Many of my concerns were about social interactions but there’s not been much chance to observe that during lockdown so I really didn’t know whether I was overreacting. But her behaviour has become more rigid, and then she started pre-school, and the signs have escalated, and preschool have said they have significant concerns too... and that we need to make a referral. Even though I saw some signs and was not (I don’t think?) in denial I was still completely shocked to realise that it was so clear-cut for the school. (Not that they would ever say ASD, but I know they know, and they know I know... it’s the excellent school my DS goes to and i know the teachers and Senco from my son’s journey).

Anyway, I have felt completely winded by it, and am shattered actually. I’ve cried so much over the last 3 weeks. I love my son so much but selfishly, I just wanted to experience ‘normal’ parenting too. And I wanted a child who would grow up to be independent and have all the opportunities that most kids do. Of course she may live an independent life, it’s too early to tell, but the certainty that people take for granted has been snatched away. And I know that life will be harder for my little girl than I hoped it would be.

And then there a lot of complicated emotions: guilt, especially, because the fact that I’m so upset doesn’t reflect well on my feelings for DS (though I love him very much, if I’m honest I wish he didn’t have ASD and if I could magic it away I would). Also a not-very-admirable envy for all the people who just pop out two perfect kids and have an average boring life, and take that for granted. And this lonely feeling of drifting further apart from my old friends who don’t understand this journey we are on. I just feel as though the fight has drained out of me, and I need to get it back. I am sure I will once the initial grief has receded, but I do feel as though I am mourning for my girl.

Sorry that was a selfish post, it has done me good to say it all though so I hope you will forgive my self-indulgence. We haven’t even told all our family about our concerns yet. I am not looking forward to PILs’ polite disappointment ☹️

lingle · 12/11/2020 22:03

Bumping Flowers Christmas

Toffeecoffeee · 13/11/2020 00:19

Not a selfish post at all Christmas.

I’m still going through the process with my 21 month old. He hasn’t been seen yet (who knows how long it will take) but I’m pretty much sure he is on the spectrum.

I can completely relate to what you said about how much you love your son but at the same time if you could take it away you would. I feel exactly the same and we are still waiting for our diagnosis.

I think all of these feelings are completely normal and it’s good to get it all off your chest.

I find that some days are harder than others and I’m trying to take it day at a time instead of worrying too much about the future which is much easier said than done.

I hope your doing ok sending hugs x

SSJ2017 · 13/11/2020 11:23

Firstly, I am so sorry that I am only coming to these messages now. I’m not sure how I missed the messages from @violet850 and @ChristmasSeacow and lingle but I have had lots of trouble with mn notifications. I got a notification of @toffees message today and was surprised to see the others. Sorry. It’s taken me a while to write this as we’re in self isolation hell!

Thanks for the messages. It’s always such a nice thing to hear from people who understand what you’re going through, even though I wish everyone on this thread didn’t have worries too. (This is a super long response btw, sorry!).

Violet, my daughter is doing well thanks - in some ways really well - although we are still worried. She seems to be a very advanced talker which has really taken us by surprise as my son’s speech started well but then he struggled to move past single words (which he had a lot of) to put words together. That eventually was the thing that really flagged up that something was wrong. (Christmas, my son has had very similar issues with speech as you described). I’m trying not to get side tracked by her speech as it was such a focus for us with my son (still is!) and I know that her overall social interaction is what will prove important and with that I think there are issues. If I’m honest, though, I probably have been sidetracked,
and reading Christmas’ message really made me realise it. Like your little girl, has Christmas, my daughter has much better skills in some ways than my son had (and has).

In terms of how she is doing, my daughter has come out of her shell a lot which has been so lovely to see, and she’s actually a really funny little one, but that is with us. It’s hard to tell what her interaction is like with others as, like Christmas - and I expect for all our kiddies - lockdown has been difficult and she hasn’t really seen anyone bar us (and she’s hardly seen any other children). Prior to lockdown, it wasn’t great tbh. There’s a marked difference in what she’s like with us and with others. It has improved a lot with others but she still doesn’t really social smile, although we can do things to make her laugh and smile. But if you just look at her and smile (say, if you’re playing with her) she doesn’t generally smile back and actually looks a bit perplexed like she’s not sure what you want her to do. (If you walk into a room she will smile then, but I think that’s more in an “oh hi mama”/relieved to see me way, and from what I have read that’s not the same as true social smiling). She is totally obsessed with letters and numbers and has been for a while which again is a big surprise as my son struggles with anything academic. She seems to get quite obsessed with something but then it passes quite quickly (whereas we are still in firm train obsession land here with my son all these years later😊). And there are some things that we don’t really understand but which worry us. She gets really distressed and hysterical if you sing to her or she hears music, and she’ll say stop singing. There are only a couple of songs she will tolerate.

She is super interested in her brother and wails/mopes when he’s off to school and chases him about and that has been a total delight to see. The biggest change has been that my husband and I both do have a strong bond with her now. It took a long time to come - whereas it was immediate with my son - despite how besotted we were with her. Violet, so much of what you describe is how I felt and how I do feel, although not quite as keenly as in the first 7-8 months. I know exactly that detached feeling, as I think the worrying and sadness just takes over and is like a block, at least it was for me. That was so hard in the beginning and it was difficult to get past the paralysis and sadness of the “please not again” feelings. I was constantly on the look out for signs and to be fair she was very delayed in social milestones so there was stuff to worry about. She also didn’t seem like she needed us much; you could give her to anyone to hold and she’d be fine and not really looking for us (my son would have absolutely howled! Now, she’s the opposite and has quite severe separation anxiety for us both). If it is any consolation, that heavy (and frankly debilitating) sadness did let up, I think as she got bigger and did more, especially as she is very different from my son so I could only compare so much. Now, there has been such a change in our relationship and that has been wonderful. I didn’t expect it after the start we had. I hope the next few months are more gentle on you and she makes good progress. How is your little boy doing with everything, and with being a big brother?

I read your message Christmas, and it resonated so much (and it wasn’t in the least bit selfish). That longing to just have a “normal” parenting experience and finding that, once again, it is not like that is quite crushing isn’t it? Especially, when you have hoped that your child would not have to experience all of the difficulties that you have seen already. I have really struggled with that. I felt like I couldn’t play with my baby or do anything without checking what she was or wasn’t doing and feeling huge waves of sadness. Now I feel like I am in another sad place, where I see my daughter doing things with ease that my son couldn’t. Every time she does something like that I feel a huge pang of sadness for my son and realise just how behind he has been with everything. I have that rising panic again. I don’t feel like I am celebrating her achievements in the way that I should be as I am sad for how hard my son has found things. So it’s a kind of double grieving. I also totally recognise that feeling of drifting away from friends. There is just no real understanding of how different our lives are and how hard it is, especially as my son gets older.

I do get the jealous pangs as well. It’s that thing of just being able to expect certain things for my children and for our lives that I long for. Everyday, mundane, and like you say boring things.

I feel like I may be in a denial phase at the moment in relation to my daughter as she is very different to my son - she can do a lot of things with ease that he really struggled with and she seems to have much better cognitive understanding compared with my son. This has kind of made me think that maybe everything is ok, when I know it likely isn’t. Especially as he was much better socially than she is. If she has asd (and I think she does) it is going to present very differently and less obviously than with my son so that is a whole new challenge. That will and does mean I will have to get into gear and not be in denial which I think I’m guilty of at the moment. Christmas, your message made me stop in my tracks as in many ways it could be me. Same as yours violet and toffee.

I completely relate to the grieving feeling you have all mentioned. I had hoped that the constant and overwhelming worry and panic would not be here for my daughter as it was and is hard enough to manage with my son, and I can only cope with it by focusing on the here and now. Just like toffee said. (Toffee I really hope the wait isn’t too much longer. What you say about managing things day to day is really good advice and the only way I can manage things. Our little ones are similar ages).

I guess we need to grieve a bit to allow us to get to the next bit, when we’ll have to fight our childrens’ corners and be everything we can for them in the way we have before.

Violet, your message wasn’t self indulgent. It is so hard hearing from others that there are difficulties for your child and we are going through this again when we hoped we wouldn’t. You always hope don’t you? It is good to be able to say it in this way, you and toffee are right. We have so little time and space to say, right now I am just totally sad and crushed and worried.

I hope speaking to your in laws goes ok. We haven’t broached it with our families either yet. We are just working it all out ourselves. I hope the days are gentle on you, violet and toffee and others on this tread and I’m sending a big keep going hug over the waves.

I’m sorry if this was a ramble. Self isolation has been interesting shall we say!

Sending big hugs to all (and a big hi and hugs to @Bpr187) x

EspressoX10 · 15/11/2020 18:21

OP apologies for the brief message, but have children climbing on me and didn't want to read and run.

Have a look at Pivotal Response Therapy. Tremendously positive results with very young babies, all peer reviewed, credible, well researched studies.

That's the single one thing I wish I had started at that early age with DD (like you, I just knew).

SSJ2017 · 16/11/2020 08:11

Thank you very much Espresso. I will take a look at that now, it sounds exactly what I need (no apologies needed! 😊).

I hope your DD is doing well. Thank you again. I really appreciate it x

Rorlaa · 25/08/2021 07:11

Hi OP how are you and DD now? I am in the same devastating situation ...I don't want to accept I can't bear the idea it's happening again.... 5 m old DD & 2 yo DS with ASD...

Dixie17 · 02/02/2022 14:54

Hello!

I know this is an old thread but reading it so much has resonated with me.
My DS is 6 months old, I know it’s very young and many people will say you can’t spot signs at this age but I can’t shake the feeling. I find the lack of eye contact and smiles so heartbreaking. I go to some baby groups and it’s so hard seeing others of the same age stare lovingly at their mums and rolling about, interacting with each other. I feel like I can’t take seeing these comparisons anymore so I’m feeling very isolated.
I would love to hear how you are getting on now @NeedsACuppa @Bpr187 ? X

RestingStitchFace · 04/02/2022 19:16

I had a hunch mine was autistic at about a year. But I went down a rabbit hole of denial for about another 12 months.

If I was to do anything differently, I'd have spent a lot more time trying to see the world from his eyes and understand his needs rather than trying to encourage him to do 'age-appropriate' and 'normal' things. E.g. I took his walk-along ladybird off him because he was utterly fixated with it and wouldn't engage with any other toy and I was worried his development would be hindered by only playing with one toy. (I'm so ashamed about this.) I realise now he was under-sensitive to vestibular input and found it helpful to have a walker toy that 'grounded' him.

Identify the need, understand the behaviour and work with it.

BabyPiranha · 24/02/2022 17:05

I just found this thread while going down a Google hole.

DD 3yrs has just gone on the waiting list to be assessed for ASD and a friend sent me a link to an article about a link between very early milk teeth eruption and ASD. My nearly 7 month old DS has 6 teeth so far and 2 more on the way so now it’s sort of in the back of my mind that I will have two SN kids. After growing up with a brother with ASD and LDs it’s doesn’t feel great to see that my own little family may be going this way too. Nothing is confirmed yet though DD is certainly not typical anyway.

Will go back to using Makaton like we did with DD for DS, hate Mr Tumble but he has his uses.

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