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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be terrified DD might have ASD?

190 replies

Helfs · 06/03/2024 15:45

DD is nearly one, and since DH was diagnosed as an adult a few months ago I’ve gone into a rabbit hole around early signs of autism.

When DH received his diagnosis our GP did say they’d let our HV know as there can be a genetic element and they would therefore send out some support and guidance on things to monitor in DD between her 1-2 year checks. As they’d not be able to diagnose or do anything until then.

I didn’t think much of it until she recently started moving her fingers strangely, googling it, it looks like stimming, then she started squinting a bit more than normal - so of course I did the stupid thing of googling that as well.

It has got to the point where it’s consuming me. Although DH scored pretty high in the testing, he is minimally impacted by his ASD, holds down a good job, and although you can tell there are ‘issues’ in terms of large social situations etc. is pretty ok in all other areas (if you didn’t know he had ASD you’d probably just assume anxiety)

My younger brother however is the opposite end of the spectrum, very severely impacted and still needs care at 27 years old.

Growing up seeing how my brother struggled it really is worrying me. And I don’t know whether it’s normal to worry about this or not as she is our first baby (and likely our last too - as if she does have ASD I could never bring another child into the mix based on how badly my brothers diagnosis impacted me growing up)

OP posts:
PoppingTomorrow · 06/03/2024 15:47

What are you hoping for from this thread?

Helfs · 06/03/2024 15:50

PoppingTomorrow · 06/03/2024 15:47

What are you hoping for from this thread?

Pretty clear question in the post. I want to know whether it’s normal to worry about it and maybe see what other parents whose children were diagnosed young saw in their babies!

OP posts:
Bitsyholla · 06/03/2024 15:50

I was about to ask why you were terrified as that sounded quite offensive however I understood to an extent after you mentioned your brothers experience.

There is no reason to be 'terrified' or any reason she won't be absolutely fine either way. You loved your husband enough to have her with him, so who's to say she won't have the same experience as your husband as opposed to your brother?

SlipperyFish11 · 06/03/2024 15:53

I think you are being fairly dramatic. I'm autistic and you make it sound like the fucking plague. It's quite grotesque to read.

Anyway, considering the low rates of autism diagnosed in females, I'd not be too worried. We are good at masking usually. If you are accepting and make accommodations and seek to understand her, she'll be alright. Yes she may struggle socially or with her mental health, but as long as she has understanding parents as a rock she'll have something to fall back on. Listen to autistic voices and not textbooks or neurotypical accounts of what they think autism is.

She's tiny though. The things she's doing could be nothing. It's too early to say. I'm not sure why you'd worry so much over something that could be nothing, and if it was something, you can't do anything to stop it...

WotNoUserName · 06/03/2024 15:54

It is normal to worry. My second son was diagnosed at 2. I was pregnant with twins. I spent most of the years from birth to 3 over analysing every single thing, worried that they too would be autistic. They're not. I went on to have another child, and he is autistic, but doesn't have the learning disabilities my second son has, though also has ADHD. When he was younger I didn't really think he was autistic, he was diagnosed at 8. I was then diagnosed as an adult! My sons are 21 and 16 now, older one is in special needs education. He will never live independently, but has a brilliant time doing things he loves. Youngest is in mainstream education, after being home educated from 9, and has very firm plans on what he wants to do in life!

Really, I would say please try not to worry. Whatever the outcome, you can't change it, so just enjoy your little girl for the wonderful child she is.

Tinytigertail · 06/03/2024 15:55

I can understand why you are worried and it's definitely normal as a mum to worry about all sorts of things that could impact your child. However, it is really early in terms of anyone being able to diagnose, and the more you look for things the more you will see. Please try to enjoy DD exactly where and how she is right now. Worrying won't change any potential outcome, but it will impact your mental and emotional health.

Helfs · 06/03/2024 15:59

Tinytigertail · 06/03/2024 15:55

I can understand why you are worried and it's definitely normal as a mum to worry about all sorts of things that could impact your child. However, it is really early in terms of anyone being able to diagnose, and the more you look for things the more you will see. Please try to enjoy DD exactly where and how she is right now. Worrying won't change any potential outcome, but it will impact your mental and emotional health.

This is exactly the problem, I was pretty chilled about it until I saw the hand twitching, and it could be normal baby behavior but I don’t know (as I have nothing to base it on) then I google it (stupid I know) and have now spiraled.

I sit for hours every evening on TikTok watching videos of autistic babies to see if there are similarities. I just can’t get my head out of the funk!

OP posts:
Daffodilclover · 06/03/2024 16:00

Is it dramatic to worry your child might have a disability that can negatively affect them for the rest of their life? I wouldn’t say so. It’s good to be positive and it’s good to show understanding but … unpopular view possibly but autism can be really hard for everyone and I don’t think it’s unreasonable to wish it away.

BlankTimes · 06/03/2024 16:12

I sit for hours every evening on TikTok watching videos of autistic babies to see if there are similarities

For the sake of your own sanity, stop this ridiculous behaviour immediately.

What influence could it possibly have on your daughters future?
Be her mum, not a detached armchair clinical analyst. She needs your unconditional love, not your constant suspicion.

Bitsyholla · 06/03/2024 16:12

Helfs · 06/03/2024 15:59

This is exactly the problem, I was pretty chilled about it until I saw the hand twitching, and it could be normal baby behavior but I don’t know (as I have nothing to base it on) then I google it (stupid I know) and have now spiraled.

I sit for hours every evening on TikTok watching videos of autistic babies to see if there are similarities. I just can’t get my head out of the funk!

I think that sounds more of an issue than her potentially being autistic. She's your little girl, enjoy her regardless rather than obsessing like this

Dontforgetthesalamander · 06/03/2024 16:14

Will you love her any less if she's autistic?

Emmelina · 06/03/2024 16:16

It's understandable to be concerned given the severity to which your brother is affected, but I think given that it's in both sides of the family it's good to be aware of what to look out for - Autism runs strongly in families, it's all through mine and DH's and all three of our children are now diagnosed, with varying levels of support needed. Keep an eye on the signs - diagnosis early opens a world of doors to support.

waterrat · 06/03/2024 16:17

My daughter is autistic. I know its hard op but you have to stop the tik tok madness !!

None of us know what sort of humans are little babies are going to turn into

Echobelly · 06/03/2024 16:18

The thing is you just can't tell at this stage what is just a quirk of a baby's behaviour and what indicates ASD - I do see a lot of people driving themselves nuts because 'I'm not sure my baby smiles enough' or 'My toddler doesn't point at things' and this must indicate autism. You need to step away from the tiktoks and from google and just enjoy your DD for who she is and treat her the same you would have always planned to!

LoubieIoo · 06/03/2024 16:19

I sit for hours every evening on TikTok watching videos of autistic babies

that is wild! So like 20 hours a week at a guess? Crazy.

Newsenmum · 06/03/2024 16:20

I get you, I’ve been there. She’s still very young so you won’t get any clarity for a while. As you know it is massively varied and affects everybody differently. Forget the diagnosis, see how she is. When my son was around 1 or 2 I was so scared of the diagnosis. By the time he got to 3/4 I realised that a diagnosis would make me feel a million times better. And it has.

Newsenmum · 06/03/2024 16:20

I’ve also been reading a lot of books about it - really changed my mindset about autism.

Newsenmum · 06/03/2024 16:22

SlipperyFish11 · 06/03/2024 15:53

I think you are being fairly dramatic. I'm autistic and you make it sound like the fucking plague. It's quite grotesque to read.

Anyway, considering the low rates of autism diagnosed in females, I'd not be too worried. We are good at masking usually. If you are accepting and make accommodations and seek to understand her, she'll be alright. Yes she may struggle socially or with her mental health, but as long as she has understanding parents as a rock she'll have something to fall back on. Listen to autistic voices and not textbooks or neurotypical accounts of what they think autism is.

She's tiny though. The things she's doing could be nothing. It's too early to say. I'm not sure why you'd worry so much over something that could be nothing, and if it was something, you can't do anything to stop it...

Edited

Thank you for this! My son is autistic and I also prefer reading things from autistic people themselves. It doesn’t all have to be negative and it’s sad that it’s seen so negativity.

willowthecat · 06/03/2024 16:23

Are her communication and play skills age appropriate ? Squinting and hand movements would only be a concern as part of a wider concern about the overall development of a young child. I don't think you are wrong to worry, it's natural given your family background but don't fixate on one possible sign.

Blahblah34 · 06/03/2024 16:24

Given your brother’s impact on your childhood I think your reaction is natural, but it’s YOUR problem, not your daughters. Could you access some counselling to talk about this and perhaps process your childhood experiences with a severely effected autistic brother?

Newsenmum · 06/03/2024 16:24

Bitsyholla · 06/03/2024 15:50

I was about to ask why you were terrified as that sounded quite offensive however I understood to an extent after you mentioned your brothers experience.

There is no reason to be 'terrified' or any reason she won't be absolutely fine either way. You loved your husband enough to have her with him, so who's to say she won't have the same experience as your husband as opposed to your brother?

Does your brother also have a learning disability? As that could be alongside being autistic. Also things are different now. It is much more understood and accepted… hopefully becoming even more so. Autistic people are (starting!) to be listened to and outdated practises like ABA being stopped.

SlipperyFish11 · 06/03/2024 16:25

Daffodilclover · 06/03/2024 16:00

Is it dramatic to worry your child might have a disability that can negatively affect them for the rest of their life? I wouldn’t say so. It’s good to be positive and it’s good to show understanding but … unpopular view possibly but autism can be really hard for everyone and I don’t think it’s unreasonable to wish it away.

To this extent it is yeah. To the extent of obsessing and watching Tiktoks about it on purpose, then coming on here to obsess over it more. That's weird behaviour. The child isn't even 1.

All people stim BTW OP. Stimming is normal. Your child is so young that it's impossible to say right now whether it's related to autism or not.

willowthecat · 06/03/2024 16:25

In hindsight, the main sign in ds1 as a baby was his lack of engagement and lack of communication - ds2 was mind blowing - I had genuinely never realised how much typically developing babies communicate from day 1

fedupandstuck · 06/03/2024 16:26

All those videos are not diagnostic or meaningful, it is completely feeding into your anxiety about this to watch them obsessively. I would try stop or severely limit watching anything like that.

I can understand from your personal history with your brother and the recent diagnosis of your DH, why you would be more aware of this than the average person. If your DD is meeting the standard milestones of babies her age then it is not helpful to focus on tiny things like possibly repetitive hand motions.

Jellycats4life · 06/03/2024 16:27

There’s no point worrying because if she’s autistic, she’s autistic. And having an autistic does increase the likelihood massively.

Hopefully you and your husband are gaining a deeper understanding of what autism means: that it’s neither a superpower nor a tragedy in most cases, and that it’s best viewed quite neutrally as a differently wired brain. That’s my viewpoint anyway.

@SlipperyFish11 has great advice.

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