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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:
Marblessolveeverything · 06/03/2024 18:59

Given your brother's high needs it is a rational concern. This isn't a hypothetical situations it is a loved reality in your family.

I would raise a query with HV as soon as you can to put your mind at rest or engage support early to the benefit of your daughters development.

Information is power and I don't realistically see you successfully calming your anxiety until you know.

Antsinmypantsneedtodance · 06/03/2024 19:07

Worry about things you can control, not the things you can't.

I understand. Have a family history of autism. Waiting adult assessment. I went through phases of worrying that things my DD did were signs. At nearly 4 there are some signs, which over time will either turn out to be normal young child behaviour, or will become more challenging for her. I want to avoid diagnosing her before its clear either way. Alot of autistic traits are normal child behaviours when isolated. But some aren't. Time will tell. If your DD is smiling, having normal social reactions such and laughing and babbling, if she is autistic it is likely to be less severe than you describe your bother to be.

I do understand your concerns. I've struggled my whole life and still do daily. But I reassure myself that if my DD does start to struggle more she'll be lucky that she has a mum who understands and will advocate for her. She'll be fine. Your DD will be too.

Achillo · 06/03/2024 19:08

Have you ever had the chance to have any counselling about the impact your brother's condition had on your childhood?
Usually when we react so strongly to something, it is flagging something that already happened in the past rather than just worry about the future.
There is a really supportive world online these days for autistic people which is wonderful. But some people here might criticise you for saying having a sibling with ASD was hard. One of my DCs is autistic and the other isn't, and both definitely need support with the reality of our lives and its limitations at times.
You are definitely long overdue for some support and understanding, and then you can deal with the future when it comes.
If you do ever have an autistic daughter, I really recommend the book and Instagram of Chloe Hayden, a young Australian autistic woman who is one of my very favourite people on the planet.

BertieBotts · 06/03/2024 19:09

Be careful, OP. There is a sinister (IMO) corner of social media looking to convince people that their child is autistic, at a very very young age, much younger than medical professionals would be confident to advise.

It also seems to be a very autism-negative corner. So as well as this "signs your baby might be autistic" (most of which are perfectly normal signs of being e.g. a 10 month old baby, and are only signs of autism if they are still remaining at the age of 2, 3, 4, etc) there is a helping of fear and paranoia, extremely negative portrayals of autism, stories of regressions, of children losing skills, of adults with very high support needs who need lifelong care and will never be independent.

I appreciate you have RL experience of an autistic adult with very high support needs. So it's not only coming from here. But beware because the combination of this very early "look for signs!" and the anti-autism feeling tends to be a hidden pipeline to misinformation and pseudoscience. It's either antivax stuff trying to warn you away from vaccines and "mainstream medicine" entirely by drawing a link between vaccination and autism (even though this link has been studied so many times, and widely debunked). Or, maybe worse, it's trying to sell you expensive and ineffective supplements or dubious "treatments". Some of these actually veer into being extremely harmful and dangerous.

These pipelines are very dangerous. Not only for the direct harm they do to children who are harmed by the worst "treatments", but they do untold harm as well to the mental health of parents sucked into this worry, spending every interaction with your baby looking for signs she might be autistic is not healthy. You should be enjoying her at this age. I think it's cruel what they take from parents. And I think it also causes harm to the parent/child relationship because of this same thing, it gets in the way of you getting to know your baby and delight in her as the unique and special individual she is.

And then lastly I think they do a lot of harm when children do turn out to be autistic - which is not actually that uncommon, because it's not unusual to be drawn to this kind of thing because you have a family history of it, as you've found. As you know, autism is a spectrum and covers a wide, wide range of different abilities and challenges. Focusing on how hard it is to be autistic or how hard it is to have an autistic child is a devastating way to see it.

To be perfectly honest I would recommend shutting off the social media entirely, ESPECIALLY tiktok or anything else which will feed you new content via an algorithm, rather than just seeing content from accounts you follow, and looking for IRL therapy to try and change the narrative and the anxiety. But if you don't want to do this or can't do this, then what I would suggest to do instead is try to change the content of your feeds by blocking anything negative or scaremongering and looking for neurodiversity-affirming content instead. Content that celebrates autism and looks to educate people about the differences in neurotype and help people understand autistic individuals rather than demonising autism or frightening people that their child might be "broken". And stay away from "for you" pages or suggested content, try to stick to the settings which only show you stuff you're actually subscribed to.

Since I don't know if this would be helpful for you or harmful, I won't suggest any accounts but if you do want me to, I can. I'm a bit reluctant to because TBH, I follow a lot of the autism-positive/neurodiversity-affirming type content but I STILL get a lot of pseudoscience showing harmful misinformation. I can spot it fairly easily and block it, but if I was in a more anxious place then I might not be able to do that.

TheFancyPoet · 06/03/2024 19:16

well, whatever is, is. Look at how many autistic posters come on here, having families and jobs and all sorts. Nobody can predict the future even if you have completely NT child.....

shhsj · 06/03/2024 19:19

Try not to worry about something you can't control. Obviously your feeling are being driven by your childhood though so I think speaking to someone about it would be helpful.

FWIW one of my DDs has autism, the main impact is on her social skills and she requires support to maintain friendships. She's very clever though and I have no doubts that she'll be independent when she's older. Since you asked what I saw in her she was just an extremely quiet baby.

Diamondcurtains · 06/03/2024 19:50

Bitsyholla · 06/03/2024 18:57

No one is minimising it, spending hours on Tick tok isn't healthy. The op herself has experience of high needs autism as well as low to no needs in her husband. So maybe dial back the projection of your own situation when talking to other people who have told you they have autism as it could read as you 'minimising' their experience...

She is minimising it. Being terrified that your child may have autism when you have direct experience of someone with very high needs isn’t being dramatic, it’s a perfectly valid concern and any parent with that experience would be worried. Describing it as “grotesque to read” is ridiculous 🙄. She clearly has no understanding of how life can be for someone with severe autism. My son nearly died this week, it’s not the first time . It happens fairly often, so yes it would be terrifying .

How could it read I am minimising their experience? I’m informed enough to know that no matter where you fall on the spectrum there are difficulties and life can be a challenge.

what has Tik Tok got to do with anything?

SpeedyDrama · 06/03/2024 19:55

spottedinthewilds · 06/03/2024 18:43

Surely Autism is a Spectrum and each and everyone of us probably has at least a gilnt of a symptom.

Stop looking for it. Love your child however they are, you can't change who they are.

No. That’s not what the autistic spectrum is and not everyone is ‘on there somewhere’. It’s a spectrum of needs not of ‘how’ autistic you are. Those needs may stay the same throughout one’s life or become more or even less severe. But having traits associated with ASD doesn’t mean being ‘on the spectrum somewhere’, it also doesn’t mean that OP’s daughter isn’t autistic - if she is then she will have been from birth and all the op can do is keep an eye on typical development stages.

Bitsyholla · 06/03/2024 19:58

Diamondcurtains · 06/03/2024 19:50

She is minimising it. Being terrified that your child may have autism when you have direct experience of someone with very high needs isn’t being dramatic, it’s a perfectly valid concern and any parent with that experience would be worried. Describing it as “grotesque to read” is ridiculous 🙄. She clearly has no understanding of how life can be for someone with severe autism. My son nearly died this week, it’s not the first time . It happens fairly often, so yes it would be terrifying .

How could it read I am minimising their experience? I’m informed enough to know that no matter where you fall on the spectrum there are difficulties and life can be a challenge.

what has Tik Tok got to do with anything?

I disagree with you; your post saying people like the pp who said they were autistic makes you furious or whatever word you used reads to me like you saying you know best because of your experience and minimising their own autistic experience. You're free to disagree obviously, but that's how it reads to me. I too am 'informed across the spectrum as to how needs may differ and be a challenge'. I still disagree

The op has 2 ends of the spectrum, literally, as her personal experience of autism. There is no need to be 'terrified' and catastrophise it will be the higher needs end (if even autistic at all)... She could easily choose to reframe her view as the experience of the man she thought highly enough to marry, have a child with, watch him live a life where up until recently he was diagnosed.

Tik tok is relevant as the op said she spent literally hours every evening searching for tik tok videos of autistic babies obsessing over it. That is not healthy or helpful for anyone

RoseNy · 06/03/2024 20:06

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

Autistic babies? Who is diagnosing all these babies?

SensationalSusie · 06/03/2024 20:26

@Helfs

Please don’t be terrified, if autism were very severe you would most likely see some indicators by now.

I am autistic as are my DC, many friends and their DC.

I would look at it from the positive, you have experience with autism and a heads up due to your joint genetics (have you been assessed also).

What this means is you will know at the earliest opportunity, and have the chance to get the ball rolling on early intervention, DLA, Statement for school etc.

I know it is an emotional rollercoaster and difficult to not feel retraumatized…. A lot if the emotion you are feeling is relative to your brother and not your daughter.

She isn’t him, and you have tools and early awareness to implement support if she is autistic for the best possible outcome.

My advice would be treat her as an individual and love her just as she is; if she is autistic that is totally ok. And it is likely if you and husband are high functioning she will be more along those lines.

Packingcubesqueen · 06/03/2024 20:38

To answer your question- I feel like it quite normal to worry about these things when it’s in the family. I also think it’s normal to get overly worried about babies/young children when you’re a Mum.
I diagnose Autism in my role at work and I see traits and quirks in so many NT people and see stimming type behaviour in young children very often. One trait doesn’t make you Autistic. However, you can’t know what the future holds for your daughter whether she is Autistic or not. If she is Autistic, she has a Dad who can be a great role model for her and you can make sure she has a positive Autistic identity from early on.

pinkpip100 · 06/03/2024 20:45

I definitely agree with pp suggesting counselling OP - although it is understandable to have some worries, especially given your experience as a sibling of someone with what sounds like complex learning disability alongside autism, but I don't think it's 'normal' to be as terrified and fixated on this as you seem to be. Maybe a visit to the GP (to discuss you, rather than your dd)

Commonsense22 · 06/03/2024 20:54

OP, lots of people have given good advice.

Just sending a hug and handhold as I have struggled with being the only non asd person in my extended family, albeit everyone being very high-functioning.

So much literature is provided on the person with asd's perspective, but when they are a group in a majority, and you are the long one not... It can be extremely traumatising in a different way as your perceptions and emotions are constantly invalidated without you realising.
It sounds like you may be in a similar scenario.

Helfs · 06/03/2024 20:57

Achillo · 06/03/2024 19:08

Have you ever had the chance to have any counselling about the impact your brother's condition had on your childhood?
Usually when we react so strongly to something, it is flagging something that already happened in the past rather than just worry about the future.
There is a really supportive world online these days for autistic people which is wonderful. But some people here might criticise you for saying having a sibling with ASD was hard. One of my DCs is autistic and the other isn't, and both definitely need support with the reality of our lives and its limitations at times.
You are definitely long overdue for some support and understanding, and then you can deal with the future when it comes.
If you do ever have an autistic daughter, I really recommend the book and Instagram of Chloe Hayden, a young Australian autistic woman who is one of my very favourite people on the planet.

Thank you for the book recommendations, will save this comment just in case!

I never had any help or spoke to anyone about the impact of my brother on me growing up. My parents got it a bit but as his needs have got more severe through the years I stopped speaking to them about it as their plates were full (and tbh, quite a lot of the issues are around how they parented through the issues, not just my brothers needs - and I don’t want to make them feel guilty)

OP posts:
Helfs · 06/03/2024 20:58

Dontforgetthesalamander · 06/03/2024 16:14

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

Of course not

but it will make me very sad to have to worry infinitely more about her future than I’d have to normally

OP posts:
Helfs · 06/03/2024 20:59

Newsenmum · 06/03/2024 16:20

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

Do you have any recommendations? I’m glad a diagnosis helped too Flowers

OP posts:
Bitsyholla · 06/03/2024 21:00

Helfs · 06/03/2024 20:58

Of course not

but it will make me very sad to have to worry infinitely more about her future than I’d have to normally

But you might not... Do you worry about your husband more so after his diagnosis or do you just love him as the capable man you married? I agree with pp suggesting speaking to someone to process your sibling experience as the tik tok thing will spoil what should be a lovely experience for you x

Helfs · 06/03/2024 21:02

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.

To be honest if she was both DH and I would probably consider it more a tragedy than anything else.

He is a bit more concerned about it than I am, as he also feels a lot of guilt over it since getting his diagnosis and feeling responsible for her potentially struggling more than she should have to

OP posts:
Bitsyholla · 06/03/2024 21:03

Helfs · 06/03/2024 21:02

To be honest if she was both DH and I would probably consider it more a tragedy than anything else.

He is a bit more concerned about it than I am, as he also feels a lot of guilt over it since getting his diagnosis and feeling responsible for her potentially struggling more than she should have to

That top bit sounds deeply offensive

Helfs · 06/03/2024 21:05

Singleandproud · 06/03/2024 16:31

Have you ever considered that you might be autistic, particularly if your brother is. You are certainly hyper fixing on this particular issue.

Your daughter is here now, there is definitely a chance any child you had could be autistic with it being on both sides of the family. It would make sense to parent her with this in mind and how wonderful that you are already aware of the possibility and professionals are already on the case and aware so that she won't be in her teens if she does require an assessment.

My daughter is autistic like your husband she is very low support needs, learning to balance her energy levels is generally the trickiest part so that she doesn't get overwhelmed. Parenting a child with high support needs is without a doubt a life changing challenge, but anyone of us could require similar support through accident or injury at any point in our lives. I bet you don't go around terrified you'll be in a car accident and require support like that so don't be worried about your daughter.

Not sure if this is considered a hyper fixation (I’ve spend the last week on calls with my brother discussing his new fixation of otters so it definitely doesn’t seem to fall into the same category!)

Plus I don’t fit any of the other diagnostic criteria Blush

OP posts:
Helfs · 06/03/2024 21:08

Rainbowpopit · 06/03/2024 16:44

My dd was diagnosed at just 2, she is very severely affected by her ASD. I won’t lie it’s hard-every day is a struggle but every now and then I see tiny glimpses of progress and it keeps me going. You do cope and it becomes your new normal it’s not something to be scared about Flowers

Thank you for this, I’m pleased your DD is showing those signs of progress Flowers

OP posts:
Helfs · 06/03/2024 21:10

DaphneHendersonChorley · 06/03/2024 17:05

Did you stop to wonder how offensive your post title is?

Terrified?

You are lucky to have had such measured responses.

Well I am terrified

I’m terrified my perfect baby girl will have more struggles than most, and that worst case scenario she might need a lifetime of high support needs

Im terrified to have a life like my parents.

OP posts:
PoochiesPinkEars · 06/03/2024 21:11

I think the best thing you could do would be to sell some counselling so you can sit your concerns and process your feelings in a way that helps you get past them.
Even if your DD is autistic, most likely that couldn't be confirmed until she is much much older and you don't want to be watching her with fear all that time.
She's a delight and she's here, whatever will be, will be... you now need to find a way to prevent your fears (understandable though they may be) casting a shadow over her childhood and your parenting experience.
So if you channel your efforts into anything, channel them into finding that way to manage your emotions and not into scrutinising her.

Vinvertebrate · 06/03/2024 21:13

Please don’t be terrified, if autism were very severe you would most likely see some indicators by now

Sorry OP but this is not actually true ime. My DS was the sunniest, most engaged baby. He regressed at 2 and was diagnosed with ASC at 3 (with PDA profile) and has SPD, ADHD and dyspraxia - all “fellow travelers” if you like. He’s been kicked out of 2 schools and we can’t holiday or socialise. Ever.

I’d call that more tragedy than anything else and your concerns are absolutely valid. I’d have terminated if I’d been able to see the future and more children were out of the question. Please try not to obsess because it’s bad for your MH, but it’s sensible to seek early diagnosis because in theory it means support (arf) is available. You won’t find anyone reputable who will diagnose before at least age 3 though.

good luck Flowers

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