Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Original poster

Terrified my daughter has ASD, how to just roll with it for now?

23 replies

xheek · 31/08/2022 13:50

DD is 10 months. She isn't laughing at all. Hasn't laughed once yet. I know they can speak a load of rubbish and all babies are different, but every development email I seem to get suggests a baby should be laughing by now. She has never laughed.

Physically she's fine, sits up, rolls over etc. Good head control. And she does smile. But you have to work for it if you want more than one after the initial ':)' at you booming 'hello!'. She seems to just get fed up of you after that

She's a very content baby, excellent sleeper, a baby that you wouldn't get any grief from during the day unless she's either hungry or in pain. Doesn't feel like I have a baby really. Very easy.

She doesn't like being held. So if she's upset, she likes a little pat on the back maybe but you'll really stress her out if you keep picking her up. She prefers to settle herself. Won't be held to go to sleep etc. always been that way.

The lack of laughter plus the not liking being held, and constantly squinting at daylight when she goes out makes me think something isn't right

Now, I know i won't know anything or even be taken seriously for referrals for a long while yet. But how do you just stop and live in the moment?

It's so hard. My DS is profoundly autistic, high care needs that need 24/7 supervision. I'm worried sick she will be like him

OP posts:
Hugasauras · 31/08/2022 13:57

I think you're probably hyper aware because of your DS and that's understandable. I will say that none of that sounds unusual at this stage, but I can totally get why you are struggling Flowers I think all you can do is try to put the fear to the back of your mind and just live for the moment. Easier said than done.

Have you had any help for yourself since your DS's diagnosis to help you deal with things? It must be so tough for you.

WhoAre · 31/08/2022 13:58

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

goldfinchonthelawn · 31/08/2022 14:01

What you describe doesn't sound like a textbook case. The ASD babies I know, including my own and a close friend's, were very unhappy babies - never slept (very common) never ate (also very common) constantly crying, delayed motor skills and poor eye contact. Rigid when held.

FWIW, after a rocky childhood and adolescence, my ASD DC is now 20, the cuddliest, most emotionally intelligent member of my family, a great cook, in a loving relationship, with plenty of friends to go on holiday with, and on target to get a first from a top RG uni. Many people with ASD have exciting lives.

Interested in this thread?

Then you might like threads about these subjects:

9-12 months old Babies & sleep Families
Original poster
xheek · 31/08/2022 14:02

Thank you, yes I know it's too young to tell realistically Sad

It's the laughing! I think that's what is bothering me so much. Should be starting around 4 to 6 months. She's now 10 months and never laughed at all.

DS was similar as a baby in the sense that you didn't really know he was there as very quiet BUT he was a Velcro baby. Loved to be cuddled and breastfed non stop. She can't stand too much touching and is very much not interested in me cuddling her at all. Even when she's upset, she just likes if you sort of acknowledge her crying then she is happy to stop and settle again. She gets quite upset and angry, going all rigid, if you pick her up

OP posts:
Original poster
xheek · 31/08/2022 14:05

goldfinchonthelawn · 31/08/2022 14:01

What you describe doesn't sound like a textbook case. The ASD babies I know, including my own and a close friend's, were very unhappy babies - never slept (very common) never ate (also very common) constantly crying, delayed motor skills and poor eye contact. Rigid when held.

FWIW, after a rocky childhood and adolescence, my ASD DC is now 20, the cuddliest, most emotionally intelligent member of my family, a great cook, in a loving relationship, with plenty of friends to go on holiday with, and on target to get a first from a top RG uni. Many people with ASD have exciting lives.

But my own DS has asd, like I say in my post. He is profoundly disabled and needs 24/7 supervision and care. He will never live any sort of independent life, will need people changing nappies for him lifelong etc. so I guess my experience of ASD is very profound so I don't have the same 'everything will be okay' thoughts as from my DS's diagnosis at least, everything absolutely won't be okay and life will be incredibly sad and tough for him, and one day I'll be gone (dead) and he won't know why Sad

OP posts:
BryceQuinlanTheFirst · 31/08/2022 14:07

There isn't a single profile of autism as you know, my son laughs constantly and always has, he has high needs autism.

You're going to have a really challenging few years if you can't come to peace that your daughter could be autistic, it's always a higher chance when it's in the family. But from what you've said so far that isn't enough to suggest she is.

Original poster
xheek · 31/08/2022 14:09

BryceQuinlanTheFirst · 31/08/2022 14:07

There isn't a single profile of autism as you know, my son laughs constantly and always has, he has high needs autism.

You're going to have a really challenging few years if you can't come to peace that your daughter could be autistic, it's always a higher chance when it's in the family. But from what you've said so far that isn't enough to suggest she is.

No but there's quite a clear profile for profound autism. My son laughs hysterically, but it isn't at anything at all that I can point out. It's usually followed by biting and head banging Blush

OP posts:
Namechangehereandnow · 31/08/2022 14:13

Even if she does have ASD, her needs will likely be very different from your sons. As you know, no 2 people with ASD are the same. Maybe she’s also picking up on your hyper anxious and alert state? I would try to just go about as normal and keep a diary for now.

Original poster
xheek · 31/08/2022 14:17

Namechangehereandnow · 31/08/2022 14:13

Even if she does have ASD, her needs will likely be very different from your sons. As you know, no 2 people with ASD are the same. Maybe she’s also picking up on your hyper anxious and alert state? I would try to just go about as normal and keep a diary for now.

Well no but that's the same with anything. For example, DS has a classmate at special school who's mum I've got to know. They are different in terms of smaller quirks and likes, but ultimately both of them are profoundly disabled, doubly incontinent, don't respond to their own name, flight risk that needs 24/7 supervision. At risk due to no awareness and putting things like animal droppings in their mouth if not supervised closely enough etc.

Whether or not one likes lights and the other finds them very distressing, or one likes close and pressure touch and the other doesn't is irrelevant. Their overall care needs are that of a profound and severely disabled person

OP posts:
Original poster
xheek · 31/08/2022 14:21

Sorry I should probably also rephrase my OP.

I'm not worried DD has ASD. She most likely will in my honest opinion since it's genetic and I have an Asperger's diagnosis. I'm worried she will be like DS, profoundly autistic

OP posts:
goldfinchonthelawn · 31/08/2022 14:31

OP, I understand more now why you are concerned. But surely it's too early to tell. Your description of yourDS's behaviour as a baby sounds totally neurotypical, yet he turned out to have profound needs. Your DD may be on the spectrum hich is as PPs have said, so diverse you can't gauge how much support someone might need long term when they are in babyhood.

EveryFlightBeginsWithAFall · 31/08/2022 14:39

My ds was similar at that age , he was dx with asd at 2 . He's now 9 and isn't high needs, mainstream school and the whole oh you wouldn't know he was autism thing from people 🙄

He was late to talk (4) and potty train (5) and stopped sleeping for a few years once he was about 14 months, although he sleeps fairly well again now.

When he was very young I thought he would be high needs and that he wouldn't be able to go to a mainstream school so understand the worry, especially as you have a ds with profound autism but even if your dd does have asd it doesn't necessarily mean she will be the same

ThePumpkinPatch · 31/08/2022 17:02

Terrified? What exactly is there to be 'terrified' of?? How utterly insulting to those of us with PERFECTLY NORMAL children with ASD! Biscuit

Original poster
xheek · 31/08/2022 17:06

ThePumpkinPatch · 31/08/2022 17:02

Terrified? What exactly is there to be 'terrified' of?? How utterly insulting to those of us with PERFECTLY NORMAL children with ASD! Biscuit

A child in nappies for life. Unable to even care for themselves, needing 24/7 supervision lifelong. Never being able to communicate they're hungry, or tired, or where they're in pain. No sleep. Horrific fights for respite and appropriate care. Again, lifelong and I won't be around forever.

Did you not read my posts? I have a child with ASD already

OP posts:
Tired2tired · 31/08/2022 17:06

Op has a child that needs full time care, 8 don't think it's that hard to understand why she might be scsred

Piffle11 · 31/08/2022 17:11

DS1 hit every 'milestone' going ... low functioning ASD and learning difficulties. DS2 used to just stare ... hardly spoke at 2 years 5 months old. We were past ourselves with worry. He's fine. And never shuts up 😄 it just 'happened'.

mountainsunsets · 31/08/2022 17:13

ThePumpkinPatch · 31/08/2022 17:02

Terrified? What exactly is there to be 'terrified' of?? How utterly insulting to those of us with PERFECTLY NORMAL children with ASD! Biscuit

I think OP is perfectly entitled to be terrified considering she already has an autistic child who needs 24/7 care.

How about a bit of compassion?

Butterdishtea · 31/08/2022 17:13

pumpkin

That is cruel in these circumstances. You're not on the op's mind. Naturally her own experiences are to the fore. I'm in the same position as you but I'm not self centered enough to take anything personal from a frightened parent. Where is your empathy.

Namechangehereandnow · 31/08/2022 17:16

xheek · 31/08/2022 14:17

Well no but that's the same with anything. For example, DS has a classmate at special school who's mum I've got to know. They are different in terms of smaller quirks and likes, but ultimately both of them are profoundly disabled, doubly incontinent, don't respond to their own name, flight risk that needs 24/7 supervision. At risk due to no awareness and putting things like animal droppings in their mouth if not supervised closely enough etc.

Whether or not one likes lights and the other finds them very distressing, or one likes close and pressure touch and the other doesn't is irrelevant. Their overall care needs are that of a profound and severely disabled person

Show quote history

But your dd may not be profoundly disabled. I understand exactly where you’re coming from and your line of thinking, but until you know for definite, I’d try to focus on the here and now. At least you then won’t have worried now unnecessarily. IF she is profoundly disabled, then worry and deal with it once you know. Otherwise in the mean time it’s just wasted energy.

I can’t say too much as it’s very outing, but a friend of mine has 2 very profoundly disabled children, very much like your son sounds. They both can’t function independently, both need full 24/7 care, can’t be together either due to their lack of understanding towards others. She has just won an enormous ruling in Court which will set as a precedent for others in her situation. So things are changing and progressing all the time, especially when just one person has the determination to fight to the ends of the earth.

If you feel this strongly about your situation, there’s no harm in approaching GP, health visitors etc now to voice your concerns - set the path ready for if/when you need to go down it.

unicormb · 31/08/2022 17:17

goldfinchonthelawn · 31/08/2022 14:01

What you describe doesn't sound like a textbook case. The ASD babies I know, including my own and a close friend's, were very unhappy babies - never slept (very common) never ate (also very common) constantly crying, delayed motor skills and poor eye contact. Rigid when held.

FWIW, after a rocky childhood and adolescence, my ASD DC is now 20, the cuddliest, most emotionally intelligent member of my family, a great cook, in a loving relationship, with plenty of friends to go on holiday with, and on target to get a first from a top RG uni. Many people with ASD have exciting lives.

Mine was like the OP's, and he is autistic.

FishFingerSandwiches4Tea · 31/08/2022 17:18

ThePumpkinPatch · 31/08/2022 17:02

Terrified? What exactly is there to be 'terrified' of?? How utterly insulting to those of us with PERFECTLY NORMAL children with ASD! Biscuit

You are, I presume, aware that ASD children have differing levels of care needs? Super happy for you that your ASD child is 'normal'. Its not the experience for many, including the OP. Here, have Biscuit yourself 🙄

Original poster
xheek · 31/08/2022 17:57

Sorry, I didn't mean to cause offence. My beautiful son is my entire world but it's no life to live, it's so very hard and will be forever for him Flowers

OP posts:
Yas1362 · 08/07/2025 08:34

@xheek hi OP. I wonder how did it turn out for your daughter?

New posts on this thread. Refresh page