To be terrified DD might have ASD?

[Helfs]

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)

My son was high risk at that age, he’s now medium risk. Don’t worry about that at this age.

Your post has left a bad taste in my mouth but I know the fear, so I do know where you are coming from, kind of. I have 5 children and 3 (boys) are ASD and 2 (girl, boy) are not. My husband is also (undiagnosed) ASD. One of my children is severely disabled. We have a beautiful family and our life is full. My boys are super intelligent and will be a force to be reckoned with in whatever career path they chose. Our severely disabled child has changed us for the better and enriched our lives in ways I can't describe. Your daughter will be perfect just the way she is!

What red flags is the MCHAT producing? She sounds very advanced so I’m surprised at that result.

The health visitor (and the internet) told me that all babies stim so that doesn't really mean anything.

I can understand your fear. I went through a similar stage with my daughter who avoided eye contact and wasn't babbling at 10 months. I had a list of about 15 signs of autism I thought I had seen in her. I didn't keep the list and I don't remember what the other things were so she must have stopped (or started) doing them.

Once I stopped obsessing, I was so much happier and more present. I wish I hadn't wasted all that time worrying. Nothing I could have done anyway. And even if it turns out she does have autism, she is still so darn cool and awesome.

Apparently it’s flagging on - not seeking our attention, not making eye contact when getting dressed, not actively showing us things, no pretend play (although I’m not sure if that’s something for older toddlers anyway) and not mimicking actions.

Although I assume if she was to be actually diagnosed in future the questions might be explained or clearer, as the mimicking actions, she doesn’t mimic, but learns. So she won’t sit in front of me and if I clap, she won’t clap, but if I say ‘if you’re happy and you know it clap your hands’ she will clap as she knows what to do - if that makes sense

But if she’s watched you clapping to nursery rhymes and also claps in the right places that is mimicking isn’t it? And imaginary play doesn’t kick in until closer to 18 months in my experience, there’s no way I would expect that for a baby around 12 months, so discard that. If you build a tower of bricks for her to knock down does she knock them down and then look at you? Does she point at objects like a dog to draw your attention to it? Although it’s also on the early side for pointing.

OP, I worried so much about my DS when he was little and his autism. I worried about what would happen to him as an adult - would he be able to hold a conversation, have a job, would he be in residential care etc . My worries spoilt my enjoying of his early years tbh 😩. Don’t let this happen to you. Enjoy your dd. She will always be your baby, autism or not but she won’t be little for ever. If she does have autism, you’ll spot it. I saw it in DS without looking online.

Honestly it sounds like there is more likelihood of you getting diagnosed than her. Obsessed with watching autistic babies on TikTok! And also I find your attitude towards autism offensive.

Autistic here.

Here's the thing - you can't affect whether she is or isn't autistic at this point. There is, quite literally, nothing you can do to change the way her brain is wired.

What you can do is stop watching daft TikTok videos for which you have absolutely no provenance, and do some practical research on how you might best help her cope with the world if she turns out to be autistic. Look at environmental changes within the house that might help her avoid sensory overwhelm, be conscious of potential comorbidities (which are often the part most people focus on), consider how you might help her adapt to social norms while not forcing her to exhaust herself with masking as she gets older...and stop listening to the horror stories that are experienced by a small percentage of parents of autistic children; all you're going to do is send yourself into a mad panic, and that won't help either of you.

Another thing you and your husband can do is start looking at how you can both come up with a common approach which helps him - there are a lot of banana skins for autistic parents, usually based around sensory and scheduling issues, and you can evade most of that stress by planning ahead (eg what are you both going to do when the baby's screaming and he's close to a shutdown?).

...but, more than anything else, you can just accept her for who she is. Regardless of her neurotype, she's going to be challenging and wonderful in nearly equal measure.

@ntmdino 👌

@Helfs Your comment re otters and your fixation with autism rang a lot of alarms. It’s common for autistic females to have fixations with socially acceptable topics, such as their child’s health. My four year old autistic girls special interest has always been dolls.

Below is an interesting report into autism and girls

https://autisticgirlsnetwork.org/keeping-it-all-inside.pdf

Why does my comment regarding my brothers current fixation topic ring alarm bells.

I meet none of the diagnostic criteria for ASD.

Again, I meet none of the diagnostic criteria for ASD.

This is an odd comment indeed

They won’t believe you. These type of posters ‘spot it’ in absolutely everyone they meet.

M Chat is a screening tool and it's a good starting point - and it seems some areas of concern have come up - however M Chat is intended primarily for older toddlers and if the results were like yours for a 22 months old it would be very serious. In your case, only time will tell and you have to navigate that difficult line between realistic observation and extreme fear of the unknown. No one can spot autism online but equally no one can spot typical development online either. For ds2 the green flags for typical development were engagement and consistent social eye contact but it's hard to put those qualities in a check list

Hi Op.

I honestly could have written your post word for word.

I also have an extremley severe Autistic brother with a learning disability who will need 24/7 care for the rest of his life. It was absolutely horrendous growing up with him and I have experienced so much physical and emotional trauma from him that has affected me way into adulthood.

I also completely resonate when you mentioned it seems like a death sentence because this severity of autism is exactly what it is. My parents have been his carers and are now in their late 60s and they still have to walk around eggshells constantly having to repeat things exactly how he wants and bow to his every whim or be met with extreme physical violence. Its heartbreaking to watch that this is still thier lives thats been going on for 30 years and will be for the rest of their lives until they die or are incapacitated that they cant see him anymore.

I think the posters who are berating you for autism bashing just cant grasp the concept if they havent had experience of this level of autism. Yes they might have an autistic child that might be a bit challenging but when they can also experience joy from them its really isnt the same level as someone as severe as my brother.

I also have 2 children one who is 10 and is NT but I remember obsessing to the same point as you are looking for signs of autism. I think its only natural considering what we experienced as children. I now also have a young baby and I am highly anxious again of looking for signs.

I know I havent really offered any advice because I dont really have any. But I just wanted to let you know you're not alone in this and its a genuine and I think perfectly rational fear considering how autism is genetic that you would probably really benefit from having counselling over.

If you would like to PM me to talk more Im happy to chat 😊

Thank you so much for this comment. Nice to know I’m not the only one going out of my mind trying to spot symptoms!

The walking on eggshells is exactly it, I’m grateful it’s not as bad with DH but having been pushed down stairs just this past Christmas because I said something my brother deemed not acceptable it’s something even as an adult I’m constantly worried about, saying the wrong thing, looking at him the wrong way etc.

I just don’t want to have the same life as my parents, or continue the life I had a child into adulthood with my own daughter

It rang alarm bells because it highlighted that you didn’t understand that females intense interests are often based on everyday subjects, therefore, you may have a limited understanding of autism and girls. Rather than Tick Tock you’d be wise to look at NHS sites and charities focusing on autistic females, such as the SWAN network

If your DD is autistic the way you parent her will have a significant impact on her quality of life.

The people who are offended by your concerns are being unfair, as though the net effect of everyone's autism on the individual and everyone around them is just a value judgement, when in reality of life with those like these two brothers is not just a matter of perception.

I get it, when you struggle just to be accepted and valued for who you are you will rail against unfair judgement.

The issue is that the term autism is ambassador for such a broad church, those getting offended and those concerned about this degree of impact are comparing apples and pears and it makes for a circular argument.

OP, you mentioned that you'd be looking into adopting before your DD was born, which made me think.

Forgive me if this doesn't apply to you at all, but just in case: we couldn't have our own child for a long time (multiple losses, infertility). When I finally got pg and it stuck we were delighted and honestly shocked. DS is at school now but I spent the first 3-4 years of his life just waiting for something to go wrong and looking for "signs", as if I was mentally preparing myself for it to not work again.

Looking back, I wish I'd have been able to just enjoy him without that burden. Whatever will be, will be, and what won't, won't bother you. Wishing you well.

I find this offensive

My dd is ASD. She showed no signs at all until 8 or 9. She’s 17 now and fucking delightful. We all have to deal with shit in life.

Ds isn’t ASD. He struggles with anxiety instead. Everyone has something.

@ArseInTheCoOpWindow but op isn't worried about the kind of autism your DD has. She's worried about autism that affects life much much more negatively. Autism is an inadequate term for expressing two such very very different prospects of people like your DD, and people like her brother and that of a pp. They are poles apart.

Yes we need better ways to describe the different autism conditions as otherwise we end up with people saying that having a cold is really not a big issue in life and that they are offended by people with cancer going on and on about serious illness like it was a problem

I don't quite get why people would waste their energy getting offended on behalf of themselves or their children, because some other person is concerned their child may have problems which are very very different and much much more challenging.
The only connection is that the term used to describe the reason they are who they are is the same term... But the reality and experience of it couldn't be more different!
Why are these offended people equating the two. 😵‍💫 Surely it is possible to recognise there is a gulf between them.

My son has OCD, the propensity for which was most likely inherited from me. If someone said they were terrified that their child might have OCD, why would I be offended? It is shit. Our lives have shrunk to practically nothing trying to deal with it. Saying this doesn't mean I don't absolutely love my child. It means that his condition has had an extremely negative impact on all our lives - mostly his. And I fret about his future. Some people's OCD is less severe and they can find ways to manage and mitigate their symptoms. My son's OCD is not like that.

It is human to panic and catastrophise. Some people are more prone to this than others - ya know?! Maybe they are neurodivergent themselves. Rather than be offended, maybe try to understand.